Any much needed advice from mums of babies born early due to placental insufficiency?

(287 Posts)
Millymolliemandy Fri 18-Mar-11 11:24:33

Hi,

We had a very worrying appointment with our consultant yesterday at 26 + 5 weeks, where we were told that the placenta is not working properly and we should prepare ourselves for probable early delivery by c-section. We have another scan/doppler in a week.

We did have some pre-warning that this could happen with a very low PAPP A reading at 12 weeks, baby measuring small at 20 weeks, growth and doppler at 23 weeks where baby was still small but placenta working on the high end of the normal range.

I am desperately trying not to worry myself sick and instead prepare ourselves in the best possible way for baby coming quite soon, if the placenta function decreases over the coming weeks.

I wonder if anyone can give me any practical advice about preparing for a prem baby and a c-section. For some reason, the thought of a c-section is making me particularly upset as I had really hoped for as natural a birth as possible, and I am also desperately keen to breastfeed.

Sorry for the long ramble, but would love to hear from anyone who has found themselves in a similar situation.

efeslight Fri 18-Mar-11 21:03:02

I'm glad you are being monitored and have some time to prepare for this, i wish you all the very best.

We had a similar problem ,identified at 27 weeks, i went into hospital and had a doppler every other day for a week.

my son was delivered at 28weeks +3 weighing 1pound 11. I tried very hard to express milk using the electrical pumps available in the SCU and we also hired one to use at home, but the milk never really came in any great amount.

But most of the other mums in the unit had more than they needed at the time, so were freezing dozens of bottles to be used later when their baby needed more. I just told myself any of mother's milk (MM they called it) was better than none.

I continued to try to express for the 3 months he was in hospital as he was never really able to latch on, and was too weak to suck, however when he came home, our amazing midwife was able to latch him on in less than 2 weeks. If only this help was given in the unit earlier we might have been successful and been able to establish a flow. I gave up after 5 months, and regret not being able to bf for longer, but many other mothers in the unit did not have this problem.

Having a c-section never really bothered me, they are common and i knew he had to come out as he wasn't able to survive any longer inside. You have lots of time to bond with him later, doing 'kangaroo care' holding him against your skin and letting him smell you, feel your heart beat, breathing, listen to your voice etc.

The environment of a SCU unit is obviously difficult and we visited before to have a look around and try to understand the equipment, tubes, lines etc, so try to visit if possible. maybe take a pen and paper to note down the details given of the special care provided and equipment used. My husband was able to take in some of the details, but i found it hard at the begining to remember what machine did what and what all the measurements displayed on the monitors meant.

For very premature babies their heart rate, pulse, level of oxygen in the blood, blood pressure is constantly monitored and its helpful to understand what all the numbers mean.

I also bought 2 books, 'the premature baby book' and 'your premature baby and child' to refer to, they are helpful/reassurung and scary at first.

my son is now one and a half and doing very well.

best of luck

Millymolliemandy Mon 21-Mar-11 15:19:26

Thank you so much for your advice. Trying to think straight at the moment is proving a challenge. We have our next scan this Friday - I am terrified that things will have deteriorated and that delivery will be the only option, but it sounds like you had some warning, with more regular dopplers. Was your son able to have steroid injections before he was born?

I think you are right about a visit to SCBU, this is a whole new world and at least it will give us a chance to prepare ourselves. I'm going to ask about this on Friday.

I have contacted a Le Leche advisor and have already been sent a big pile of leaflets on breast feeding a premature baby, which I am reading through.

Did you find you met Mums in similar situations in the SCBU and were able to share information?

I am so pleased to hear your son is doing well. Thanks so much again for taking the time to respond.

efeslight Mon 21-Mar-11 20:14:32

Yes, we had a little warning, knew it was going to happen soon but my husband had nipped out for a sandwich and came back to find me gone, straight to theatre!

They did a doppler on Fri night,which wasn't good, said they'd repeat it in the morning and then Sat am found there was almost reverse flow, away from the baby,so he had to come out immediately.

He had been given the steroids during the week in hospital so his lungs had matured a little.
We knew he was going to be small (IUGR), do you know how much yours weighs approx?

Prior to the identification of the problem at 27 weeks, everything was fine and I could still feel him kicking so knew he was still active.
There were some complications, small brain bleed, operation on his lung, infection scares etc, but the care was excellent.

I did talk to some mums, but all this happened abroad so not everyone spoke english, which was obviously quite stressful and isolating.
But we made it!!

Think positive, i'll be thinking of you on friday xx

WillbeanChariot Mon 21-Mar-11 21:27:20

Hello MMM. I have been there too. I was packed off to hospital after measuring small at a midwife appointment and to cut a long story short DS was born five days later by C section. I second the advice to look around the unit, we did and found it helpful.

I had planned to deliver at a birth centre and was very disappointed to have to have a section but it gave DS a better chance. It was ok and I recovered very quickly. One thing I wish I had known before was that I could choose the music in the operating theatre, you might want to choose some. Also get some big high waisted pants and soft tracky bottoms for after.

I don't know how small your baby is. My DS was 560g born and whisked away to NICU before I could even see him. I was glad I was prepared for this as it would have been very upsetting.

Re. breastfeeding. I found expressing very difficult and needed medication (domperidone) to up my supply but I perservered and DS was fully breastfed until he was six months corrected and I only stopped feeding altogether when he reached 18 months a few weeks ago. It can be done! Some people recommend fennel tea to help with milk, maybe put some in your hospital bag?

I have plenty of advice about pumps, expressing etc that may be of use to you later. Also Bliss have an excellent booklet about breastfeeding premature babies that you can order or download at bliss.org.uk. There is also a message board there with lots of mums who have been through the prem baby journey.

I hope all is well on Friday and I know of people who have continued with their pregnancies for many weeks after news like yours. But it is probably best to pack a bag just in case. I went in with nothing and had to manage with random things DH brought in and send my mum to M&S for big pants! And get a couple of feeding bras for easy expressing.

It sounds like you are happy with your hospital and being well looked after. Are they a level 3 hospital do you know? They are the ones with the best facilities for really tiny ones. And I was told to monitor movements very carefully and tell them straightaway if they reduced.

Blimey I have gone on a bit, sorry. I will be wishing you much luck on Friday, and if I can help at all or you have any more questions please let me know. My DS had a tough time but he's doing really well now. These babies are strnger than you think! xx

WillbeanChariot Mon 21-Mar-11 21:30:23

Or stronger even.

And I did have the steroids, second dose about 50 hours before he was born. His lungs were not so good so I am very glad he got the benefit of them. Will stop rambling now!

jjkm Tue 22-Mar-11 06:18:48

Mine were born at 26+2, but not for placental insufficiency. My main recommendation would be to hold your child at every opportunity you get, but don't be hard on yourself when you can't. I didn't get to hold our twins until they were over a month old because of all of the machinery they needed to breath, and because they were too small to maintain their heat. If I could go back, I would make doubly sure to do what is called skin to skin once they were able to be held. There have been studies that show it tends to improve the outcomes of those babies.

Having heads up does wonders for their development. I knew a girl who was born at 27 weeks who went home at 35 or 36 weeks without oxygen. Her mom had had both of the steroid shots prior to the c-section.

Millymolliemandy Thu 24-Mar-11 15:08:58

Thanks so much, hearing advice from Mums who have been through this really helps.

I went in to the Labour Ward this morning to have a trace as was worried that the baby hadn't been moving and they were super nice; in fact they brought my growth/doppler scan booked for tomorrow forward and did it today and baby is fine (started wiggling as soon as they started monitoring, typical!) and has put on some weight and the situation with the placenta remains stable, that is to say, not great, but at least no worse.

So, now I know what the little one weighs, and currently it is 710g which sounds tiny but has gone up form 56og a week ago, so that is also good news.

I had a chat about breastfeeding with the consultant who was hugely encouraging, and I will ask about going to see the SCBU when I go back - which is on Monday as they have scheduled me in for steroid injections then (and Tues), with the next check/scan/doppler being on 4th April.

We are feeling a bit more positive now, as by 4th April I'll be over 29 weeks.

Thanks also for the tips on Kangaroo Care, which I am really keen to learn more about.

Off now to order the book you recommended efeslight.

WillbeanChariot Thu 24-Mar-11 19:22:08

Hello MMM. I am glad to hear all is as well as it can be, I have been thinking of you. It's brilliant your baby has put on weight! Someone told me they like these babies to get to 28 weeks and 600g before delivery so your LO is doing really well. I'm so glad they were helpful on the ward- I asked for a trace at one point in hospital because I hadn't felt DS move, and the midwife on duty was really huffy about it. Still makes me cross!

It's good you are getting the steroids too. Sounds like you are in a very good place.

Bliss do a Parents' Guide which prepares you for what is likely to happen in NICU and if I recall correctly there is info in it about kangaroo care. It's really good for your baby and bonding but it can also be good for your milk. You can get it from the Bliss website or the hospital might be able to give it to you.

Wishing you lots of luck and sending positive vibes.

Bearcrumble Mon 28-Mar-11 09:50:00

I had low PAPP-A at 12 weeks too as well so had warning. I developed high blood pressure and DS's growth started to slow around 28 weeks and was transferred to consultant led care at the high blood pressure clinic.

Started beta blockers at around 30 weeks and had BP checks about three times a week, scans every couple of weeks. At 35 weeks was admitted for c/s as blood flow in DS's brain was a worry.

He was 4lb 5oz - Caesarian was fine, very calm and I was even joking with the theatre staff. Was nervous of course but as soon as I heard DS cough and cry I was so happy. He was whisked away and I didn't see him for about 12 hours - I had been asking to go to SCBU but they didn't want me to get up before then. DH was going back and forth and taking photos for me. I was shuffling around the next day and the recovery was actually a lot easier than I had expected.

I started expressing colostrum by hand as soon as I got to the postnatal ward - don't expect your milk proper to come in for about 5 days. So they gave me little 1ml oral syringes and I had to catch each drop as it came out - tricky but it was good to keep my mind off the worry, I did it as much and as often as I could. Unfortunately my hospital didn't have a milk bank so the colostrum was mixed with formula and given to him via an NG tube.

As soon as my milk came in (woke up on day 5 with rock hard boobs) I switched over to the electric pump they had on SCBU - everyone had their own attachment and sterilizer tank and you'd just sit behind a curtain on a rocking chair with the pump attached to you. It helped to look at photos of DS - made me produce more milk.

We started getting him used to breastfeeding on day 2 I think - he was so sleepy he'd only manage like 10 or 20 sucks before falling asleep but we kept going and the amount he'd get from the breast would go up and he'd have less and less down his tube. The nurses were very helpful at getting the latch right - I didn't know about biological breastfeeding at the time but I wish I had - read this: www.biologicalnurturing.com/# I think it would have been easier for me, and less painful.

Hold your baby as much as you want, sit next to him/her and read - whatever you want to do. Never feel like you are getting in the way.

Best of luck, I hope you can make it to 30 weeks at least. x

Millymolliemandy Mon 04-Apr-11 14:33:02

Thanks everyone for your advice and kind words.

Just back from another scan and should be feeling ok as the verdict is that placental function has not declined so they are happy to leave it another week before they see me again, BUT the baby's estimated weight is only 780g and I just can't seem to get over how small that is. I am 29 weeks today.

Please please please start putting on weight baby!

fedupandfifty Tue 05-Apr-11 17:43:40

Hello Milly. Glad you've reached 29 weeks. I had mine at 29 weeks following a placental abruption, and had to have an emergency section. There was no warning - I just started to bleed. DD was 2lb 6oz and was on the ward with babies of 750g, and this was 9 years ago! Even then, a 29 weeker had a 95% chance of survival. DD had underdeveloped lungs, but was fine and has never had any health problems - quite the opposite in fact! She suffered with infections in her first year but I'm convinced she owes her rude good health to having fought off these infections at an early age!! I didn't get any milk, however, despite drinking Guinness, eating Mars and pumping for Britain. Try not to let this get you down if this happens to you. Good luck with everything - sure it will all be fine.

Millymolliemandy Wed 06-Apr-11 12:34:54

Thanks fedupandfifty, good to hear good news stories about 29 weekers, and littuns too! And thanks Bearcrumble for some really top advice. Feeling a bit more positive today, this is such a rollercoaster, it's horrible not knowing every week whether it could be the time they decide the baby has to be delivered, but I feel I owe it to the babe to be as strong and positive as possible, it doesn't need a stressed out Mummy!

SouthGoingZax Wed 06-Apr-11 12:41:45

Hi Milly, Just to add support. One of my DTs had this, I had pre-eclampsia, spent the last 2 weeks of pg in hospital and had a section at 37+3. We had the steroid injections - they sting a bit but not as much as I had been led to believe!

Both Dts were in NICU for a fewdays and were tube fed expressed milk and formula top-ups even though I too was desperate to breastfeed. The NICU really supported me with this. By 1 week old they were both ebf and we carried on for 10 months.

As far as the c section goes, the acute procedure is really fine though I was really scared it was just a bit odd really. After the section really do insist that people hep you loads - the nurses are so busy they will just assume you are OK if you don't make them aware you need help.
12 hrs after my section I was walking over to NICU to see my boys. 10 days later I did a half hour walk.

The very best of luck. To be well informed is really important. If you can possibly wangle a private room and get DP/DH to stay that is an enormous help. I am sure if DH had been there helping me to position the DTs to feed they wouldn't have needed to go to NICU with low blood sugar.

abgirl Wed 06-Apr-11 12:50:01

MMM I had DS1 at 29+4, partially due to placenta issues but also pre-eclampsia. He was 1002g when born (and had only shown at 850ish on the scan) I was so relieved as it meant he was big enough by 2g for our local SCBU. However I didn't get to see him for 36 hours, which is unusually long, because of another v small baby being born at the same time and needing to be transferred out, and that was pretty tough.

We were in SCBU for 10 weeks and I did express for him the whole time, we never really got on to actual BF, but he had expressed milk until 5 months and then went on to formula - which in the circumstances I was extremely happy with. I did say that if I had another premmie I would use formula from the start as the whole experience is stressful and getting up in the middle of the night each night to express did not help me cope with the other issues that arose. However DS2 was full term and I did BF for 6 months in the end.

If I can give you any advice it would be to take as many photos as possible and maybe keep a journal as my DS1 is 6 next week and the whole SCBU experience is now becoming a bit of a blur - DS is very interested in it all though and we are raising money for another boy who was in SCBU at the same time as us and now needs to travel to the US for an op.

Good luck and keep us posted!

abgirl Wed 06-Apr-11 12:51:50

Oh yes, had CSs with both my DSs and with DS2 got a private room (after 24hrs on recovery ward) - it was lovely to have a bit of space and quiet.

Millymolliemandy Wed 13-Apr-11 13:40:11

Thanks SouthGoingZax and abgirl. Well, we have made it past 30 weeks (30 + 3 today!) so that is great. Also had a scan/doppler appointment yesterday and were told that there is no change with the placenta function etc so to aim for 33 weeks, which is good, although I think I am now going to be going in for a CTG and a scan on separate days every week.

The baby is still tiny - 850g from scan measurements, but hopefully still has 2 and a half weeks of weight gain at least ahead of it. I too have to get the baby to 1000g to get into the local SCBU so extra incentive!

Thanks for all the advice and support, starting to come to terms with the inevitable c-section now and feeling a bit more positive.

WillbeanChariot Wed 13-Apr-11 19:13:23

Hey MMM just checking in. Glad you are still cooking and feeling more positive. Fingers crossed for weight gain.

efeslight Wed 13-Apr-11 21:02:19

Good news Milly, i've been checking regularly for updates, and wishing you well. We were told every day inside counts so you are doing well. Look after yourself

sixer10 Fri 15-Apr-11 19:22:11

Hi Milly,

I'm sending you all positive thoughts for your LO. I have also been diagnosed with placental insufficiency, following small measurements at my 20-week scan. We are currently waiting...and waiting...because nothing else can be done now until we reach 27 weeks (scan on 4th May), however badly the placenta is doing. I can really relate to your willing the baby to grow...I have even taking to singing a "baby growth" song when I'm out of earshot of my other half! I am told that the baby needs to reach 550g for them to be able to deliver, so the fact that yours has reached 850g and 30 weeks I think gives you a really excellent prognosis. Please keep posting if you can. All best wishes.

Millymolliemandy Sat 16-Apr-11 11:47:50

Hi Sixer10, sorry to hear you are in the same boat. Have you had a scan since 20 weeks? I only ask beacuse after my 20 week measurements I have had one weekly since 23 weeks, which, I have found reassuring. We are now going in several times a week for scans, dopplers, and ctgs. Also have you had/been offered/discussed steroid injections?

I am feeling slightly more positive, although I am on such a rollercoaster of emotions, tearful one day and then ok the next. I am so pleased to have made it to 31 weeks tomorrow! We are just back from a ctg and the baby's heart beat is good and strong, what is getting me in a right fluster at the moment is checking for movements, which I keep being told is super important, but it is so hard as they seems to change day to day and I don't want to keep going in and pestering them for a trace!

From my baby-brained calculations of your 27 scan week dates, you must be about 25 weeks; so getting there, do you know how much your baby weighs at the moment? Really hoping your growth songs are working, I have been giving my placenta a really good talking too in the hope that that helps, and also eating extra Cadbury's creme eggs...

Keep me posted and let me know if I can be any help with any questions, I have 2 absolutely fab consultants whose brains I have comprehensively picked. Feeling that forewarned is forearmed.

Take care of yourself and that baby. I have next scan and doppler on Monday so will update then. Keep your fingers crossed that baby stays in.

Millymolliemandy Mon 18-Apr-11 12:42:15

Hello, well; just back from hospital, and baby is going to be delivered tomorrow. I think the verdict is that the baby is better off out than in, so feeling a very strange mix of emotions right now. I'll be back to let you know how it goes, but keep your fingers crossed that this little baby is a fighter.

WillbeanChariot Mon 18-Apr-11 21:21:05

Hello Milly. Good luck for tomorrow. You know your baby is already a fighter, look how far she has come. She has every chance of doing very well. I hope everything goes smoothly and you are able to spend time with her as soon as possible.

I will be thinking of you and your little girl tomorrow. Hope you have packed your big pants! Look forward to hearing how it goes.

WillbeanChariot Mon 18-Apr-11 21:26:42

sixer, hope you are ok. I also used to chat and sing to DS to encourage him to grow. He was 560g born, had his issues but now doing well. Keep us updated. I hope your LO is growing and kicking away to reassure you. Where are you in the country? Have you been referred to a specialist unit?

sixer10 Fri 06-May-11 15:10:31

Thanks for your messages, and I'm so sorry not to have posted sooner. In the latter part of the seemingly endless wait for 27 weeks, I found it difficult to compare myself with anyone really, without knowing what we could be dealing with. The scan was on Tuesday, and whilst the placenta is clearly struggling, the baby's brain and heart are normal size, and he isn't showing signs of having to make "adaptations" yet (whatever that means). He weighs 737g, which is obviously tiny and far less than he should be, but I am still quite delighted with this as my previous consultant was so pessimistic about even reaching 550g. I am being seen at Tooting Hospital by Professor Basky, who inspires enormous confidence. I need to go back in 2 weeks, and then perhaps weekly, depending how it is looking (whereupon I need to pack a bag). So, it looks hopeful that I will reach 30 weeks - I would love to go further still, and reach the magic 1kg.
Oh, and I have placenta praevia too, although that seems almost an irrelevance really. Is there any news on MillyMollyMandy on another thread perhaps? Would love to hear she and the baby are well.

Millymolliemandy Sat 07-May-11 20:23:18

Hello! Sixer, that sounds really positive, sending big fat growing thoughts to your little one. Sorry I haven't been online in ages, we have been flung into the world of neonatal intensive care and all that it brings.

Baby Clementine (a girl!!!) was born on 19th April at 31 + 2 weighing 923g, and is now doing well after a seriously rocky start (delivery etc were fine; and no inherent problems with baby or size but she contracted a really nasty infection at 5 days). We are spending every day with her and she is a lovely little baby, being exclusively breast fed with expressed milk and is loving lots of kangaroo cuddles and hopefully growing little by little, day by day.

We are taking things one day at a time, but will keep updating. Please let us know you get on Sixer.

xxx

Congratulations millymollymandy, lovely news, although it sounds like you've been through the wringer. Keep us posted as to how Clementine progresses.

sixer there is another thread that is fairly recent, titled IUGR and OP by hsmom. I don't know if you might have searched and read it already but it has some interesting stories on there, including mine, which I have copied below. I hope that it provides you with some encouragement. Good luck with your little one, keep up the singing because you never know smile! I think when they say "adaptations" they mean where head measurements tend to stay normal, the other ones start lagging behind, which is a "brain preservation" response that ensures that the most important organ gets the most nutrients to grow.

My 12wk scan with DS2 was perfectly normal, but at 20 weeks only his head measurement (barely) made it on to the chart, he seemed to be about 3 weeks behind. Dopplers were normal except for the reverse flow, which was absent, the significance of which no one seemed to be sure of at any time.

We were told the most likely explanation (by Prof Nicolaides team at Harris at KCH) was severe, early onset IUGR and the outlook was poor. His estimated weight was 120g and as you know, the target for delivery into scbu with a good outcome is 28wks and 600g....which seemed such a long way away. We had amnio, TORCH screens, achondroplasia tests done, all came back clear so we then continued to scan every two weeks (and torture ourselves with what awful conditions might be causing the growth restriction-please try not to do that too!). As time progressed, DS2 seemed to defy expectations because he continued to grow at normal velocity, following a standard curve but right at the bottom, or below the chart. The prof suggested that maybe there had been some damage to placenta early on but that it had repaired itself..some amazing things can happen.

We made it to 37 weeks, at which point the fluid was low, so they induced me. DS was born weighing 4lbs [1.95kg] but fine, no need for scbu, just 3 nights in hospital to get his blood sugars up and treat a bit of jaundice with
light blanket. He is still, at 16m and approx 9kg just below the 0.4th centile but perfectly normal, developmentally on track (chatty, says mama, dada, sibling names, feeding himself, walking). He is the happiest baby I have ever met and so cute. Although we hope he will catch up in size, after such a stressful and seemingly never ending pregnancy we feel so lucky to have him. I really hope you have a similar story to tell too, I will be thinking of you and wishing you well.

efeslight Sat 07-May-11 22:52:21

Congratulations on the birth of baby Clementine, lovely to know all is well. One day soon you'll be bringing her home, and you can have her all to yourself. How are you feeling? Please look after yourself, and take time to come to terms with everything, you've been through alot.
My little boy is now nearly 21 months and has recently started walking, after 18 months of physio we have now been successfully discharged! He's also learning new words every day,its taken a while but things are starting to fall into place. Please keep posting xx

sixer10 Tue 10-May-11 10:22:42

MillyMollyMandy, it's so lovely to hear about Clementine - it sounds like she is doing really well now. I can well imagine how your routine has been taken over the SCBU, so thanks for continuing to post. If she is able to digest breast milk and can have kangaroo care that sounds brilliant, and I'm sure she is stronger by the day. Are you given any indication when she may be able to go home - will she automatically stay until her original due date, or is there some specific milestone she needs to reach?

Sleepwhenidie, as you can imagine, I gobbled up your story with glee! It is such a happy outcome, and your little boy sounds delightful. I think my placenta is unlikely to improve, but your case just goes to show that you never can be sure, and who knows, if my singing could only get a bit more tuneful, it might finally respond!

Next scan is next Tuesday, 17th, so we shall find out more then. In the meantime thank you all for your positive thoughts.

No worries, I will be thinking if you. I don't think my placenta improved, it just didn't deteriorate as dr's expected it to, so that is all you need, keep ticking along as far into last trimester as possible. Good luck xx

efeslight Tue 10-May-11 21:33:56

Hello sixer, the criteria for going home for our little boy was being able to maintain his own body temperature outside of an incubator, being able to breathe and not having an apnoea alarm for a week, (when premature babies stop breathing, this often happened during feeding and sleeping), weighing about 2kg/5 pounds, and feeding successfully, ie not falling asleep with exhaustion halfway through a feed.
He had a last minute check by a Chief Neurologist to ensure he was generally healthy. We also saw an eye Dr who checked for signs of potential eye problems premature babies are prone to.
This was all achieved roughly when he was due anyway, born late aug, (28 weeks) home mid nov.
good luck for scan next week, please keep posting x

WillbeanChariot Wed 11-May-11 17:35:40

Congratulations MillyMollyMandy, and what a gorgeous name! I'm so glad she is doing well. smile

sixer glad to hear you are still cooking too, it is fantastic. When I was pregnant I was told my son was favouring head growth over abdomen which I guess is 'adaptations'. His abdomen measured about two weeks behind his head size from what I recall? They said that with severe IUGR a growing baby will favour brain growth over other organs. I thought that was quite amazing although in the very tiny ones it means they are born with very immature guts in particular.

From what I recall he had to breathe, eat and maintain temperature to go home. I think it varies between units. Hopefully you will have a long way to go and a smooth ride when the baby is born. Will be thinking of you.

WillbeanChariot Wed 11-May-11 17:38:00

Oh and just to add, we didn't have time for much screeing but DS was screened for all kinds of scary genetic conditions after birth- all negative. Most IUGR is related to placental insufficiency rather than anything else.

sixer10 Thu 19-May-11 20:45:51

Well, another scan, and we are told that the placenta is "stable". Now 29 + 5, we were given an estimated weight of 889g (and a very angry-looking scan photo, too!). I am going back in 10 days (next Thursday) for the next scan - we are not sure what to read into this, as we understood that if everything was fine we would continue to have fortnightly scans.

But overall we are really pleased. I have to hold back from asking thousands of questions though about what sort of problems there might be in breathing, digesting, etc. Your point about immature guts, Willbean, makes perfect sense - does that mean he will take longer than other babies born at the same gestational age to be able to digest breast milk? And if he was born now, would his eyes be open (as I think they should be at 29 weeks), or shut, as they would be a 25-weeker (which is his equivalent weight)? I am also unsure whether to ask to look around the SCBU, which I've heard have helped others deal with this quite frightening environment. Any insights on this would be very much appreciated.

I think I'm the opposite of some others who have posted, in that I would really like to stay with the FMU, but if I reach 34 weeks I will be expected to go back to my local hospital. I am preparing to do battle if I can, as I really feel alot more confident about the level of expertise at Tooting.

Anyway, sorry about quite a boring post. Lovely news from hsmom today, though!!!

clabsyqueen Fri 20-May-11 14:16:47

Hi to the ladies on this thread,
I have to say thank you to all of you who post your stories. I am quite reluctant to start/join a thread but am in need of some advice on how to manage my brain over the next few weeks.
We found out on Wednesday at UCLH FMU that our little lady has asymetrical IUGR due to placental insufficiency (sky high resistance in my placenta - thanks a bunch!). I am 24+6 today and she weighed 511g on wednesday so she is far too small/young to do anything with/even consider steroids for lungs. They have said that they cannot predict what will happen (she might die or she might not) but go home, relax and come back in a week for a doppler to check on blood flow. What?? I cannot comprehend where I am going to get the strength to stay sane. Hearing your stories has really helped though. Thank you.

WillbeanChariot Fri 20-May-11 18:35:22

Hey sixer, glad to hear things are still as ok as they can be. You are not far off the magic kilo. I think the more scans the better, I wouldn't read too much into it.

When my son was born he was not fed for about ten days as they suspected infection in his gut. They can give them nutrition intravenously if they are not certain about whether they can tolerate milk. When DS was ready they gave him tiny tiny amounts of expressed breast milk by tube to get some good bacteria into his gut and then slowly built up. You will be encouraged to express because breast milk is much much easier for them to digest than formula.

We did look around the unit before DS was born and we found it helpful. There are also lots of useful leaflets from Bliss that the hospital will probably give you. I should think his eyes would be open if he was born now- DS's were.

I think I would be with you about staying where you feel confident. If I learnt one thing from my experience it was don't be afraid to stand up for you and your baby. Hope you can deliver where you want and go on for a long time yet!

clabsyqueen Sorry you are going through this. WHo is looking after you at UCLH? I had similar problems and DS was born there (27 weeks, 560g). They are AMAZING. The dopplers will tell them a lot more about how things are looking. It was deteriorating dopplers that caused the decision to deliver DS. I'm sure you have been told to monitor movements in the meantime and go in if your little girl is moving less.

Knowing what I do of UCLH, I would think that if they thought things looked very bleak they would have tried to intervene. 500g is not too small for them to help. Having said that I really hope that your baby continues to grow and stays put for many weeks yet. Sorry you are going through this, it is so worrying. I will be thinking of you.

clabsyqueen Fri 20-May-11 19:16:09

Will bean,
Thanks so much for your reply and reassurance. I'm glued to the screen at the moment in the absence of any other plan of action. Dr Pandya is now our consultant and they were amazing today (dr Fred ushakov esp lovely today) when I went in in a total state about movements. Not what they need I know but I think I'm allowed one mental moment.
Deteriorating dopplers is all i can think about. Didn't think id ever have so much medical knowledge! How is your little boy now?

WillbeanChariot Fri 20-May-11 20:10:01

Hey- glad to be some use. I have been there and I know how it feels. Dr Pandya was the consultant who decided to deliver DS and therefore saved his life. I recall that he didn't have the greatest bedside manner but he is clearly so good at what he does and I had complete confidence in him.

My DS is doing very well. He had a rough ride at the beginning but he's now 21 months, a bit small and some way behind but expected to catch up. I did a lot of talking and singing to him in that horrible time after I knew there was a problem, I thought it might encourage him to grow. Made me feel I was doing something anyway.

I will check back in a bit later on or tomorrow morning. The Bliss website and message boards are a good source of info and support too.

clabsyqueen Fri 20-May-11 21:32:42

His bedside manner was very direct indeed but I have trust in him. Nice to hear that your little boy is doing ok.

sixer10 Fri 20-May-11 21:38:57

Thank you, WillbeanChariot, for your support! It's great to be able to ask silly questions that I know aren't strictly necessary to ask the Professor at Tooting.

Clabsyqueen, I too was told that nature would have to just take its course once the placental insufficiency was diagnosed - this was at just 21 weeks, and we had to wait until 27 weeks for the next scan, assuming that they would not intervene if things happened sooner. At 21 weeks, the baby had an estimated weight of only 315g (so I think your baby is probably doing better than mine was at 24 weeks!). My placental resistance was, and has remained, extremely high (sum of Pl>2.5, looking back at my notes). But things are now relatively stable, and everyone seems quite optimistic that the pregnancy could continue for a while yet (I'm nearly 30 weeks), and the baby will be over 1kg when it is born. After our 6 weeks of waiting and feeling helpless, I can really sympathise with your feelings at the moment, but you should really take heart from the examples on this forum and elsewhere - chances are, your baby will be fine.

clabsyqueen Fri 20-May-11 21:51:01

Sixer, wow you've gotten through 9 weeks of sheer hell! I am full of admiration. My PI values are 2.8 and 1.6 (should I add those together to get the sum value that you talk of?) good grief if so! It is so soothing to hear that your situation has stabilised. I have my fingers crossed ours does too. Poor little lady - feels weird to have your body working against something you want more than anything. Best of luck you both. I hope to keep in touch on here.

clabsyqueen Fri 20-May-11 22:10:13

Have just read back onnthis thread fully and want to say a big congratulations to Millie Molly Mandy. You will no doubt be joining new threads with thevwhole new world you have now entered. I have my fingers crossed clementine is growing well and getting fatter by the day.

sixer10 Fri 20-May-11 22:21:29

My PI values are 2.37 and 2.62, so you are in good company!

clabsyqueen Fri 20-May-11 22:28:54

It seems I am sixer! When are they planning to deliver your little one? Is there a date they won't go over or does every day count?

clabsyqueen Tue 24-May-11 07:43:43

Well, it feels quite lonely on this thread at the moment but I'll keep updating anyway just in case there are lurkers like I used to be! Survived 6 sleeps since being told the bad news and with only 1 (unnecessary) panicked visit to the labour ward at 7am. Not bad I reckon. Think I scared a few people on my train at the weekend by sobbing when informed of a delay. Must have thought I was nuts - I will never again judge ladies who lose the plot for apparently no reason! Got 26 week midwife appointment day and I am not letting her come near me with a tape measure. I know my bump is tiny, don't need reminding. Doppler tomorrow at 10am for a placental assessment. Let's hope there's been a miraculous drop in resistance but I'm not holding my breath.

efeslight Tue 24-May-11 12:48:42

still here, clabsyqueen and thinking of you. you're right, every day inside counts so wishing you all the best for doppler tomorrow. what are the PI values and what do they mean?

clabsyqueen Tue 24-May-11 15:48:12

Hi efeslight,
The PI values measure the resistance to blood flow in the placenta. Meant to drop as pregnancy progresses to allow rapid exchange of blood and growth. High numbers mean high resistance so fewer nutrients and less growth for baby. Not exactly sure what number would be normal. Think below 1 would be much better. It's a shame you can't get a qualification out of all this knowledge we accumulate in times of trouble. Waiting for my midwife now. The most cheerful lady I've ever seen. I'll soon put paid to that!

WillbeanChariot Tue 24-May-11 18:33:20

Hi again clabsyqueen. Just wanted to wish you luck for tomorrow, I hope to see you back on here with a very dull report! Will be thinking of you.

clabsyqueen Wed 25-May-11 11:55:40

Just back from FMU at UCH. Not great news but could have been worse. Blood flow in baby slightly less favourable (ductus venous resistance up). Have to go in again on Friday for another Doppler and neonatologist apt. Mr Pandya predicts a decision on delivery will have to be made in the next few weeks (not sure what a few means!). Such a touch and go time to try and decide as she is very low weight for her gestation so although 26 weeks sounds hopeful (we reach that on Saturday) she is actually much smaller than that. 28/9 weeks would make it much easier to decide what to do.

WillbeanChariot Wed 25-May-11 14:08:31

Hi again clabsyqueen I have sent you a PM.

sixer10 Wed 25-May-11 22:10:35

Hi Clabsyqueen, just logging on to see how your appointment went today. What estimated weight have you reached now, and what were your PI readings? Please try not to get down about it - if your baby needed to be taken out now, she could and would be, so your placenta is still doing some good! I am just 4 weeks ahead of you and expecting an imminent decision, so if Mr Pandya is talking about making a decision in another few weeks then you will soon be as far along as me and find things looking surprisingly optimistic.

sixer10 Wed 25-May-11 22:22:31

I also meant to say, I so relate to your midwife appointment! I wanted never to go back to Kingston after they insisted on measuring me at 23 weeks, even though I had a diagnosis of IUGR, and reported that I was 6 weeks behind. Since then I've been going for fortnightly checks with my GP instead, which is much more relaxing - he doesn't seem to have a tape measure, and I don't have to wait in a room full of massive-bellied women (that sounds really bitter; of course I can't know whether they have different complications, but I do feel superficially very envious).

clabsyqueen Thu 26-May-11 10:57:09

Hi sixer, glad to hear you are both hanging on in there! 30 weeks sounds incredible to me. I just cannot imagine making to that. The scan report was very brief, they didnt report the numbers they had on previous ones, only reported that the ductus venosus in the baby had gone up (a slight worsening in mr pandya's words). The situation is stable was also written. No growth estimate either, that will be next Wednesday. Not feeling very optimistic about much growth as my tummy has not changed at all and I have not gained a pound since last scan. Fingers crossed.

efeslight Fri 27-May-11 08:55:45

agree with above, clabsy, she's okay where she is for the moment, are you going in today again? 26 weeks tomorrow so try to keep positive, it sounds like you're being well cared for and closely monitored, so hope the news is good today, will be thinking of you and sixer.

sixer10 Fri 27-May-11 10:53:21

Another scan yesterday, and another short reprieve - now on weekly scans, so we are obviously getting close.
Clabsy, I reckon you might be surprised by growth next week, irrespective of whether you can notice it yourself in your bump or your own body weight. After all, mere oz make a difference, creeping up past 1lb and hopefully towards 2. Do you have another appointment before your scan on Wed? I'll be thinking of you.

clabsyqueen Fri 27-May-11 16:11:30

Dear ladies,
I am going to make this my last post. Scan today showed reversal of flow in the umbilical cord. Final stages of deterioration it seems. She had gained 50g in the last 10 days and so now estimated at 560g. After speaking with the neonatologist we decided not to deliver today, we felt it wasn't the right thing to do for her or us. I know that not everyone would do the same and I hope nobody is upset by our decision. We are now at home waiting for the inevitable which might be 2 days or 2 weeks we don't know. I feel a strange kind peace as things have gone downhill much faster than we first thought they would but being so little and so young has made the right path obvious to us.
Best wishes to all those who continue their IUGR journey.
X

WillbeanChariot Fri 27-May-11 18:43:51

Hey clabsyqueen. I'm sorry it wasn't good news and you had to make such a hard decision. Wishing you strength and peace.

sixer10 Fri 27-May-11 20:37:18

Clabsyqueen, I am glad you were able to reach a decision that is right for you. I'm very sorry that it wasn't meant to be, and wish you all the very best. xx

efeslight Sat 28-May-11 06:58:31

Oh, clabsyqueen, so sorry to hear your news, please take care xx

WillbeanChariot Fri 03-Jun-11 15:05:50

Hi sixer, wishing you all the best for your scan today.

sixer10 Sat 04-Jun-11 21:41:51

Thank you so much Willbean. It's all still stable, remarkably, though there is a very slight deterioration in the placental blood flow. I have one more weekly scan next Thursday, but have now been booked for c-section on the 20th June - when I will be just over 34 weeks. We had a look around the NICU which made it all seem much more real - I think my partner was in slight shock but I'm actually raring to go now. Obviously in an ideal world the baby would stay in the womb a bit longer, but given that it's not I'm quite keen to move on to the next stage and try to do my best to make up for the rubbishness of my placenta in other ways!
I'm wondering whether to buy one of those baby nest things that help to hold the baby's limbs to its body - I've read that this helps to recreate the feeling of the womb, but also help to channel the baby's energy into growth rather than uncontrollable limb movements. Did anyone else find this sort of thing necessary or useful please? Also, are nappies expected to be taken in?

efeslight Sat 04-Jun-11 22:02:50

hello sixer, glad to hear things are going well, 34 weeks would be great.
the nurses used rolled up towels which were obviously quite old and so really soft from repeated washing, they laid them in a little 'u' shape, and fitted our little one inside to keep him feeling secure and cosy.
we also used soft t shirts that we had worn, so it obviously smelt of mummy/daddy and wrapped it in a similar way. we put a soft toy that had been nestled down my top for a day into the incubator for a more homely feeling. we also put a photo of us on the side of the incubator! but then we didn't have much time to prepare so hadn't researched or bought any special stuff.
we didn't take nappies in, they had all the 'micro' pampers ready, and when he was very small the nurses weighed the used nappy to keep track of how much was going in/out.
completely understand the shock, its quite a rollercoaster, whats your expected weight now?
keep in touch if you can.

clabsyqueen Sun 05-Jun-11 12:16:04

Dear ladies on this thread,
I am tentatively writing this post as we are still hanging on in here at 27+1 and est. weight 600g the last week has undoubtedly been the worst of my life. After going home with reversed flow on Friday and preparing myself for a stillbirth I had a big bleed on Sunday night and went to UCH expecting the end to be soon. Anyway after 4 days in the hospital, steroids shots and dopplers showing reversed flow no longer present (at least for now) we are now home waiting for a scan on Wednesday next week. I have accepted that this could turn out in many different ways but if we do end up with a baby in NICU it would so nice to have you ladies to talk to. My main goal is to keep the panic attacks to a minimum between now and then. A big challenge. Wish me luck.

clabsyqueen Sun 05-Jun-11 12:18:36

Sixer10 I am so glad you are still hanging on in there. 34 weeks is as good as full term if you have a good unit. You must be so relieved. I am so pleased that things have stayed stable for you. Our doc said that if the rate of growth stays the same ie minimal then she is better off out at 28 weeks rather than staying in. I hope she manages a bit more. Good luck x

efeslight Sun 05-Jun-11 15:38:51

hello clabsyqueen, nice to hear from you, sounds like a difficult time but you still have hope. Have been worried about you, and wondering how its going.
my little boy was born at 28 weeks, at 780g, and is now running around throwing stones in the garden and now you're not far behind us!
will keep everything crossed for you and sending you lots of warm wishes and good luck xx

WillbeanChariot Sun 05-Jun-11 17:47:01

Hi clabsyqueen nice to see you on here again, I have been thinking of you too. Sounds like an incredibly difficult time as efeslight said. I wish you all the best in keeping the panic in check until Wednesday. Sending positive growing thoughts to your little girl.

Sixer 34 weeks will be amazing! What's the estimated weight now? My son had one of those little nests provided by the hospital, maybe your unit will have them too? They also did the rolled up towel thing. Nappies depends on your unit, we were in one that provided them and one that didn't. Pampers do prem sized ones and Nature babycare too I think? How exciting that you are planning for the birth! I was really excited when my son was born too despite the circumstances. I just wanted to meet him!

I was encouraged to put breast pads in the incubator with a bit of expressed milk on, they said the smell of it would be comforting. Hopefully at 34 weeks you will be able to have lots of cuddles very soon anyway. So pleased for you.

sixer10 Tue 07-Jun-11 20:20:26

Clabsyqueen, it's wonderful to hear from you again; it's obviously been an absolutely hair-raising experience for you, but so brilliant that you are still hanging in there. Each of the last 2 weekends I've spent having minor panic attacks at hospital - first one thinking my waters were leaking, second one with reduced fetal movement - so it does seem to me that managing our own emotions is the biggest challenge in all of this. Meanwhile our babies are just getting on with it....
I didn't have the complete measurements at my last scan to get the estimated weight, but on the 27th May we had an estimate of 1099g. I've bought some sleepsuits for 2 - 5lb - assuming they won't be worn to start with anyway. Thanks willbean and efeslight for your insights on the nicu, it's incredibly helpful to hear. Clabsyqueen, please do keep in touch. I'm thinking of you lots.

clabsyqueen Tue 07-Jun-11 20:46:20

Hi sixer,
1kg!!! That is absolutely brilliant. It sounds like you have also been through the mill, but as you say baby is hanging on in there! My little lady is kicking away today after a quiet one yesterday. I have to admit to just keeping very quiet and still and thinking it's for the best if she has gone, heart breaking to do this every week. I keep looking at people getting on with life drinking a coffee, having a glass of wine and wonder if I'll ever be able to do that again. Scan tomorrow. No sleep tonight. Thinking of you x

WillbeanChariot Wed 08-Jun-11 09:14:16

Hi sixer, brilliant that you are over 1kg. You must be counting the days until the 20th.

Clabsyqueen thinking of you today, best wishes to you and your little girl.

clabsyqueen Wed 08-Jun-11 15:17:34

Hi ladies, back from scan with mixed feelings (of course). Blood flow slightly worse but relatively stable. Some growth but minimal - now 630g estimated. The gain in gestation (28 weeks on Saturday) is encouraging but the extremely low weight is worrying. Back to the couch for deep breathing and box sets of DVDs until next scan on Tuesday next week. Exhausting!

sixer10 Wed 08-Jun-11 18:31:20

You are being fantastically brave about it. 630g is definitely progress - quite similar to me at 27 weeks in fact. As I understand it, the key is just that there continues to be growth, however small, despite the blood flow issues. I hope you have a really gripping box set to keep you going till next Tues! Another scan for me tomorrow, to confirm if we can go on till the 20th, or whether the c-section needs to be brought forward to next week.

efeslight Thu 09-Jun-11 12:23:13

hello, clabsyqueen, lovely to hear you're both still hanging on, keep up the good work!
sixer, sounds like you're doing well, and know a little more what to expect now. Good luck for the scan tomorrow, have you got your stuff ready? camera, comfy pjs etc?

WillbeanChariot Thu 09-Jun-11 14:47:39

Hello ladies. Hope all is well today sixer.

Clabsyqueen it's great your little girl is still growing, and almost 28 weeks is good news. What are you watching to pass the time? Take care x

sixer10 Thu 09-Jun-11 20:35:45

Scan today was ok, but it's left me feeling quite negative, I can't quite say why. We saw a different consultant, who seemed altogether much more worried - repeated the doppler several times, and asked in a concerned tone whether I'm happy with the baby's movements (how happy am I supposed to feel, about how much movement??). I think the umbilical blood flow has worsened, but I only saw that on the report afterwards. Meanwhile the consultant has scheduled another scan for Tuesday next week, and I think we probably need to be prepared to be kept in. Anyway, good news is that the baby still seems to be growing: now 1400g. I think I'm probably just letting the stress get to me; I'm really quite keen for the waiting and worrying to be over now. Sorry about the moan. I need to distract myself with something - Clabsyqueen, pls recommend a boxset!

clabsyqueen Thu 09-Jun-11 21:37:31

Hi sixer, it's upsetting when you see different people and they interpret results differently. I only noticed today when reading our latest scan that we again have reverse flow in the umbilical cord but this was verbally reported as "slightly worse" as opposed to "the end is near" interpretation of 2 weeks ago. Am again preparing for the worst as opposed to hoping for the best.
1400g is a great weight for your little one - you must remember how far you've come since first posting. It probably seems like a lifetime. I'm in the middle of watching Battle Star Galactica but only because my partner chose it and it keeps him on the couch long enough for me to put my head on his chest!

WillbeanChariot Fri 10-Jun-11 15:26:32

Hi sixer, I think you are entitled to your moan, you have been incredibly strong and patient. I found in NICU that some cons were much more optimistic than others. They were all very good so I think it was just their manner, but I don't think they realise how a difference in tone can upset you. If they were very concerned you would have been kept in. Now you can pack your hospital bag and look forward to meeting your LO.

Sorry to to hear about the scan results clabsyqueen. As you know better than anyone these things can change for better or worse from day to day. The waiting must be very hard. Do let me know what you think of Battlestar Galactica, DH wants to see it but so far I have vetoed!

stillfrazzled Sat 11-Jun-11 14:32:23

Hi clabsy and sixer, have been following your thread for a while and so pleased to see your babies are both still hanging in there.

My DS2 was born in January at 35+5, weighing 3lbs 5ozs (1500g IIRC). Unlike you, we only found out about his problems on the day he was born - I believe it was more to do with flow between placenta and baby than the placenta itself but it's all a bit of a blur. What definitely isn't a blur is that we were told he had approx a week to live when the problem was discovered - completely by chance.

Anyway, just wanted to say that DS2 only spent three weeks in SCBU, breathed on his own right from the start, never really had any health problems barring a fairly persistent case of jaundice in the early days, and was discharged EBF. He's still absolutely tiny at five months (below 0.4th line) but happy, smiley, contented and beautiful. Tiny babies can be very very tough and determined to thrive.

I'm so sorry for all the worry and anguish you've had, and wanted to say I'm thinking of you both and willing your LOs on for a safe arrival.

clabsyqueen Sun 12-Jun-11 12:25:37

Thank you for sharing your story stillfrazzled. I'm glad your little one is doing well and that 1st percentile can still mean healthy and happy! 30+ weeks and 1000g+ seems like an impossible dream for us at this stage. I hope to be wrong!

stillfrazzled Sun 12-Jun-11 12:43:02

I hope you are, too (sounds wrong but you know what I mean).

Every day you can hang in there makes a difference at this stage. The odds at 27 weeks are already very good, and you're so close to the magic 28-week cut-off...

I remember all too well what it felt like and am thinking of you often and sending good vibes.

sixer10 Sun 12-Jun-11 17:39:09

I'm finding this a very long weekend, despite having loads to do. Clabsyqueen, I've been a coward and not looked at the report since Thursday. Now I think about it, we've had negative blood flow a couple of times, and the first time I asked about I was told that it was just one thing amongst many others that they are looking at and until now I certainly wasn't given the impression that the end was nigh.
It's funny - since 27 weeks the time has absolutely flown by, I hope it does for you too. In the meantime hope you are managing to keep occupied and cheerful through these long days; whatever it takes to get a comforting chest to lie on!

clabsyqueen Tue 14-Jun-11 12:46:57

Can't quite believe I have the composure to write this but just to say I am currently waiting for my c section. This morning's scan revealed an imminent need for delivery so we are doing it. Wish us luck as we start this journey. 80% chance of survival by delivery. 0% if we had walked out the door.

WillbeanChariot Tue 14-Jun-11 13:13:30

Clabsyqueen. How amazing that you have reached this stage and got such good odds. Congratulations on the imminent birth of your daughter. I hope it goes smoothly and you can see her soon.

Feeling emotional for you as I have been literally where you are now! Happy to chat about the neonatal journey but I recall being pretty well prepared by the staff at UCH. I don't know if you have family around you but shout if you need anything brought in for you. Best of luck to you all.

stillfrazzled Tue 14-Jun-11 13:14:21

Oh clabsy, I am crossing everything for you and your baby. Thank god you had that scan when you did.

PM me if you want to talk/vent about life in SCBU.

efeslight Tue 14-Jun-11 14:18:11

hope all goes well clabsy, sounds like you are both in good hands, take care x

clabsyqueen Wed 15-Jun-11 00:17:11

Baby Charlotte arrived. Pink. Crying (yay!). Slightly heavier than expected - 700g ish. Ventilated but not needing much (whatever that means). Going to try take her off it soon. Totally shell shocked but happy to haveher out and away from my rubbish placenta. Thank you for your help so far ladies. NICU and breast pumping here we come. Good luck sixer x

efeslight Wed 15-Jun-11 08:32:05

Congratulations clabsy, that's wonderful news, sounds like she's doing really well, you've done a great job. Charlotte's a lovely name, take lots of photos and films if you can, and enjoy your daughter.

WillbeanChariot Wed 15-Jun-11 09:37:21

Congratulations! Well done Charlotte sounds like she's doing well. Hope you are being well taken care of too, and getting to spend lots of time with her.

stillfrazzled Wed 15-Jun-11 09:49:30

Congratulations! So glad everything went so well - sounds like she's doing fantastically.

If it's any help, this www.mumsnet.com/Talk/breast_and_bottle_feeding/1119834-Calling-tiktok-other-experts-need-advice-on-expressing-while-newborn-in-SCBU was my thread where I got some excellent advice on expressing and keeping the supply up.

Some random things which helped me when DS2 was in SCBU:
1. When Charlotte's ready, kangaroo care was fabulous. As soon as he was plonked on my chest his breathing and heart rate would slow and stabilise, and he'd fall asleep. It was a lovely thing in the early days and really helped him feel like my baby. Even now, when he's tucked next to me he calms down and goes to sleep.
2. I really tried to think of it as a weird end to my pregnancy, rather than missing out on his early days. It didn't always work but got me through a couple of bad moments.
3. SCBU staff were lovely and kind and supportive and answered all my stupid questions - I bet yours will be just as good.
4. Being there for doctors' rounds every morning was a comfort - they really took the time to explain everything and ease our fears.
5. Leaving the hospital without him was hideous, but DH said it was NOT the proper homecoming, just a waiting period till we could all come home together. For some reason that helped, too.

Plus copious amounts of chocolate, cake, fish finger sandwiches, rubbish TV and wine when I wasn't planning to freeze the milk. And any and all help offered by family and friends.

Sorry if this is too long or too much right now, just wanted to set it down while I had a few mins inbetween feeds and nappies smile.

Will watch out for your next update!

clabsyqueen Wed 15-Jun-11 13:53:45

Thank you for the tips - wine! Now there's a thought! Saw her this morning and she was having an hour or so breathing room air and moaning a lot! Good girl! Too scared to get too happy about this as 2 steps forward and 1 back is what we have been instructed to expect! At the moment cannot comprehend how any liquid will flow from my breasts but will check out that link, I know there are a few other pointers around some of these threads.

stillfrazzled Wed 15-Jun-11 14:37:31

I like the sound of the moaning - if she's aware enough to decide she's not happy about things that sounds a good sign to me grin. To have been off the ventilator already is wonderful.

Two steps forward, one step back does sound about right - DS2 would take some milk and put on a little tiny bit of weight one day and we'd be elated, then puke a lot and lose a bit the next day and I'd be devastated. It's a battle of millilitres and grammes and time and it's bloody bloody hard and exhausting.

As to milk coming in, mine took several days and then I suddenly had these rock hard zeppelins stuck to my front! Spent hours in a hot bath with flannels, trying to hand express.

I got nothing with the pump till the milk was fully in, but from about where you are now was able to squeeze out a few drops of colostrum at a time, which I drew into 1ml syringes and took along to SCBU. That stuff is absolute liquid gold, I was told, especially for immature guts, so every ml is precious and helpful.

Gradually built up to 2ml, then 5ml, and after a day or so was able to hand express a couple of ounces at a time. Then had a sterilising kit for the hospital's electric pumps, and a little hand pump at home for the evening and 3am sessions (3am was awful but am told it's the best and most necessary).

Given that you're prob in for a longer time than we were, you might want to look into hiring a hospital-grade pump for home - hospital could prob advise, I think NCT and Sure Start do hire.

WillbeanChariot Wed 15-Jun-11 15:07:46

Breathing air is amazing and it's great that she is making herself heard already. Is she on CPAP when she's not in air, or just oxygen? How are you feeling yourself?

Expressing is a strange thing. I managed to squeeze out a few drops about 24 hours after birth I think, the midwives on the ward will give you syringes to collect it. I second what frazzled says about the pump. In fact I started to use the pump too early and it made my nipples bleed, twas grim. Get someone to get you some Lansinoh if you get sore, they have it at Boots on Tottenham Court Road. Kangaroo care can help your milk come in too and there's no reason you shouldn't be able to hold your daughter if she's doing ok (I did kangaroo care with my son on a ventilator). Another thing they recommended was to express a few drops of milk onto a breast pad and put a fresh on in the incubator every day so your baby can smell mum and milk.

The expressing room is a good place to meet other mums and you will get lots of support in there. Re. pumps- UCH have there own stash of pumps to loan out for free, make sure you ask a nurse when you are coming up to going home as not all of them seemed to know about it when I was there. Don't be surprised if they don't keep you long, my son was born on a Friday afternoon and I was discharged on the Sunday morning. It was a bit of a shock!

My best tip, which took me a while to work up to, is don't ever be afraid to ask a question or ask to hold your baby or anything else. The early days are scary and I was very nervous and I would sit for ages wondering whether I should ask about X or Y. Maybe it's just me but I wish I had got over it earlier. Ward rounds in NICU used to be at about 10am and very useful to attend. Do you know which consultant is looking after Charlotte? They are all great in their own way but there is one called Angela who is so lovely and supportive to parents. I hope you come across her.

Sorry for rambling on. Thinking of you and Charlotte x

clabsyqueen Wed 15-Jun-11 21:49:39

Wow! So much advice! Thank you ladies! No kangaroo care yet as she has quite a lot of jaundice and is in the middle of treatment. She is breathing completely on her own all the time now. Amazing! Cannot help but think that it is going to be the feeding that is the biggest challenge. Just setting my alarm now for the night's massage ritual! Hope I manage a ml soon!

WillbeanChariot Wed 15-Jun-11 22:06:08

So good to hear she is breathing alone, what a strong girl. Good luck with the expressing, you will get there. Those night time calls are quite a struggle but worth it. Some people say fennel tea helps encourage the milk, also make sure you are eating and drinking plenty, not easy I know. I am willing you both on!

sixer10 Thu 16-Jun-11 05:46:22

Golly, two days away from mumsnet and everything is happening! I can't tell you how thrilled I am to hear about Charlotte, and how fantastically well she is doing, Clabsyqueen!!! It's absolutely amazing, I feel quite tearful to think how much of a tremendous fighter she has been, and how she has apparently walked casually away from a rubbish placenta (think I can say that, as I have one too), to start breathing air within the week!
Everyone here will obv have much better advice on breastfeeding in the NICU. I have been reading up a bit though in preparation and found that having shopped around NCT have the cheapest hire of hospital grade machines, and it seems that if you are using them regularly rather than for the odd occasion it is really worth getting these rather than the handheld ones or the weaker electric ones.
Expressing by hand to start with seems to be the recommended approach until the milk proper comes in, as the pump will only make you sore.
I found this Bump to Breastfeeding DVD specifically about breastfeeding premature babies helpful, although some of this might already be old hat to you, with your baptism of fire over the last few days!
http://www.bestbeginnings.org.uk/breastfeeding-your-sick-or-pre-term-baby/5645b784-fca3-4f49-9041-29eeca565eb4

I'll be joining you on Monday in the same strange new world! Look forward to hearing more about Charlotte's adventures in vocalising, breathing, feeding, kangaroo care.... And will do my utmost to stay in touch from hospital as well.

xxxx

clabsyqueen Thu 16-Jun-11 15:27:32

Hello again and hi sixer - you have missed all the action!
I've been discharged and am now at home leaving the little lady in very good hands over at UCH. We are very lucky to live 10 minute walk away so it doesn't feel like I'm really leaving her. Cried pathetically on a breast feeding advisor this morning asking when I should give up she then promptly showed me how to get my colostrum out and we collected 0.3ml together! (I had been ineffectually massaging away). Considering our little lady can only tolerate 1ml an hour of food (or something) I consider that to be a fairly substantial meal!! The OH has now been enrolled in the game of catch the drops with the syringe and I have proudly handed over my third syringe (not full obv) just now. I realise that this level of detail could get tedious and most of you have already been through this so I'll spare you the rest but sixer you'll be here soon!

clabsyqueen Thu 16-Jun-11 15:30:32

ps thanks for the tips on pumps sixer. Willbean has been at UCH so she has the inside scoop on this hospital already and told us about their stash - they are going to lend us one today.

stillfrazzled Thu 16-Jun-11 15:32:58

If you're managing to get some out now, I reckon it'll go fine with the pump.

And it might not even be 1ml an hour - DS's first feeding plan (at three days old) was 1ml every FOUR hours. I might add that he sicked the first couple up, too.

Charlotte must be doing extraordinarily well to be tried on food so soon. And really glad you're nearby, we were only ten mins' drive away but that was bad enough - I was SO wobbly when discharged (one day later than they wanted because I begged so hard...).

WillbeanChariot Thu 16-Jun-11 16:34:20

Yay good going clabsyqueen. Glad you aren't too far away. I live about 45 mins away on the tube and wept buckets when we were finally kicked out (although I was discharged we were given a hospital room for the first two weeks until they were confident DS was sticking around). From memory he had his first feed at about eight days old (0.5ml every four hours) so I had a little stash by then!

It sounds like Charlotte is doing so well. I'm so pleased for you. I know you are told there will be backward steps but you must enjoy the good days as much as possible- you can't help but feel the bad ones so take the good ones too x

sixer10 Fri 17-Jun-11 08:36:27

You sounds really happy, Clabsyqueen, it's fantastic. Breastfeeding still seems a completely mysterious art to me; I can't picture myself producing at all. But determined to try, and will take all advice I can muster. Can I ask how you are feeling physically, after your c-section? The OH will hopefully drive me the first 5 days or so, but after that I will have an hour's trip to Tooting each way (bus, train and bus), and I'm just wondering how I'll feel about that.
Also - silly question, do I need to take a towel to hospital, for showers?

clabsyqueen Fri 17-Jun-11 22:10:25

Hi sixer - it's hard to say how I feel but it's certainly better than I was feeling 5 days ago when I expecting the worst. Physically feeling fine but very tired and i'm avoiding my scar if im honest too much to handle with everything else to think about. There is real sense of purpose at the moment and that is to master the 'mysterious art' of expressing. I like that phrase as it is mysterious indeed. I have just fallen about in a heap about the pressure of providing a clean area at home for expressing equipment and milk paraphernalia. I advise you to clear an area now - stock up with clean cloths for air drying equipment/alcohol hand gel/wipes for surfaces/medication/vitamins/jugs of water/treats. I think I've gotten a bit paranoid about cleanliness as the NICU is truly spotless. Home seems like a germ fest! It's also hard to keep track of times you've taken your pain killers/anti inflammatories/vitamins/arnica so I've got a little chart in a book to help me not forget to take care of myself.

clabsyqueen Fri 17-Jun-11 22:11:32

Yes - you need a towel and as everyone has said - big pants! Enjoy your weekend and good luck for Monday. X

efeslight Fri 17-Jun-11 23:38:46

yes, the constant sterilising, expressing, washing, disinfecting is all coming back to me now...
clabsy, so pleased for you, i think you've got a little fighter on your hands!
wishing you well sixer.

stillfrazzled Sat 18-Jun-11 09:43:52

Don't blame you for feeling paranoid about cleanliness - I was just the same; made everyone use hand sanitiser before touching DS2 for the first couple of weeks after he came home. You'll prob be just the same when Charlotte comes home. I had the hands of a crone and they've not recovered yet. Body Shop Hemp hand cream was what all the nurses in SCBU used, I recommend it highly.

Expressing gave me a huge sense of purpose, too. It was the most positive thing I could do for DS2 so I flung myself into it with a vengeance. And even having done it before, the first few days weren't easy so can imagine it's doubly hard for you. Am sure it'll all fall into place for both of you, though.

So how's Charlotte doing now?

And sixer, thinking of you and wishing you a peaceful weekend, a good recovery and looking forward to hearing about your little fighter, too smile

WillbeanChariot Sat 18-Jun-11 10:20:55

Hi clabsy, just a quickie about sterilising. I had a steam steriliser which was a huge faff and kept things clean for a limited time. After we moved to a different hospital (which did not have the budget to provide so many expressing kits) we kept our kits in water with sterilising fluid. I figured if it was good enough for hospital it was good enough for home and kept my stuff in a plastic biscuit box with a Milton tablet. It was much easier and it's sterile then until you use it. Might make life a little bit easier for you.

Hope you and your little girl have a good weekend.

And sixer good luck! Have a restful weekend.

stillfrazzled Sat 18-Jun-11 10:24:59

Oh yy, Milton is your friend. Still got a big bowl on the go, although it has ruined my lovely wooden worktop...

clabsyqueen Sat 18-Jun-11 12:01:28

Milton - is on the shopping list now. UCH advise soapy water and air drying for pumping kits interestingly.
Charlotte still great on the breathing front but has not tolerated her last 2 feeds apparently. You could say she has sicked them up! Trying not to worry I know it's a slow process for feeding. My biggest fear is a stomach infection for some reason, oh and I worry that she will be dropped!!! Totally irrational but had me sobbing at 3am this morning. Lovely to have you here ladies.

stillfrazzled Sat 18-Jun-11 12:14:04

DS2 did the same with his first few feeds and I was scared that he'd never ever be able to digest milk and wouldn't put on weight and wouldn't ever get out.

Rationality not my strongest quality at that point, so no middle ground on anything. grin And I was proved wrong within 24 hours or so, although he was and is quite a sicky baby.

At this early stage, her gut must be even less developed than DS2's but they've started her on the milk really early so must think she's doing well and will be ready soon. Don't know if they mentioned it to you, but the consultant told me that colostrum was not only the easiest thing for DS2 to digest, but would actually repair some of the damage/help develop the gut. So you are doing the best thing possible.

clabsyqueen Sat 18-Jun-11 21:35:58

Good news for the day - baby Charlotte now tolerating breast milk nicely but only trophic feeds which I think means not for nutritional purposes. The intention is to prime her guts gently. Also dad had kangaroo care time today and made me very jealous. We did hear that she'd lost 30g since birth and I had to keep check of myself so I didn't cry on the consultants (seems to be a different consultant every day will bean - no Angela yet). I've learnt to stay away when bloods are being taken (heart wrenching) and to close my eyes as she is lifted from incubator to chest ( too precarious) for KC. I promise to cut down on the details as of now! Am hoping that sixer junior is safe and well this time next week and taking up space on this thread. :-)

stillfrazzled Sat 18-Jun-11 21:52:40

Nonono, we want details! Glad she's doing well with the breast milk, if anything like DS2 it will be in amounts too tiny to do much good for a while but as you say, gives her insides the general idea.

30g loss could be worse - even at her tiny size, is less than half the 10% that rings alarm bells. And is almost exactly the same proportion that DS2 lost.

How are you feeling? Any luck with expressing?

WillbeanChariot Sat 18-Jun-11 22:56:11

Agree we want details, the more the better! As I recall consultants were fairly random over a weekend but work weekdays in two weeks bursts so hopefully you will get some consistency next week. Great news about her feeds, trophic feeds are for priming the gut I think and she'll be on full feeds before you know it. Lovely her Daddy got to hold her. I waited 30 days to hold my son and it was flipping hard.

To give a different perspective, weight loss is a normal and positive sign after birth and term babies lose weight. DS could not wee at first and was on so much intravenous medication that he puffed up to about 200g above birth weight, I thought it was great he had grown but the staff had to explain why they were worried about him and now I look back at those pics he looks terrible. Charlotte will pack it back on very soon I'm sure. She sounds amazing. I'm raising a wine to you all.

clabsyqueen Sun 19-Jun-11 19:59:30

All those points are very reassuring - thank you. She has had her feeds increased form every 4 to every 2 hours as a bit of a challenge for her. Blood sugars a bit up and down so they are tinkering with her fluids and insulin. She is weeing and poohing which is great to hear. Expressing is going really well which is a biiiiggggg relief. I can only imagine the horror and heartache it could cause if it was tough. Kangaroo care is lovely - just once a day for now but the side effect of that is I have now developed the "empty arms" feeling people describe :-(
Will bean 30 days must have been awful to wait. I cannot imagine. More news soon and hopefully news from sixer too. X

sixer10 Sun 19-Jun-11 22:18:22

Can't wait to join you, now. And I'm trying to take in all the stuff about expressing, trophic feeds and all the rest - I've got alot to learn! I hope I'll be able to access the internet in hospital so I'm able to continue to update, and benefit from all your wisdom. Will now attempt to sleep. x

WillbeanChariot Mon 20-Jun-11 07:48:55

More great news about Charlotte weeing and pooing! It's amazing what makes you happy in NICU. I can recall announcing it on Facebook when DS managed to poo by himself. And brilliant news about expressing. I'm so pleased for you.

Sixer hope everything goes smoothly today. Thinking of you and looking forward to your news.

stillfrazzled Mon 20-Jun-11 07:55:51

Sixer, will be thinking of you and sixer junior today. Sending all possible good vibes.

clabsyqueen Mon 20-Jun-11 09:05:23

Sixer, thinking of you today. Hope it all goes well. X

sixer10 Mon 20-Jun-11 21:39:03

Well - Eleanor Beatrix was born at 9.25 this morning. Breathing unaided, pooing (!) and upgraded/ downgraded to special care this afternoon. She weighs 3lb 4, and is in an incubator while she can't maintain her temperature. I am over the moon,though it's tough that I can't be with her. I managed to exress a tiny quantity of colostrum (1 ml), that my partner bore downstairs like the crown jewels, and I think they will try her with that tomorrow. I got 20 mins with her in my nightshirt just an hour ago, which was nerve wracking (she was fussing and her oxygen and heart rate alarms went off) but quite wonderful once she settled. Will start expressing tomorrow in earnest.

stillfrazzled Mon 20-Jun-11 21:54:03

Yay! Have been looking for this all day. So pleased for you all. Keep us posted. X

efeslight Tue 21-Jun-11 08:04:25

wonderful news sixer, congratulations, sounds like she's doing great. x

WillbeanChariot Tue 21-Jun-11 08:07:43

Congratulations sixer. Beautiful name! Wow SCBU already is great news. Hope you can spend lots more time with her today.

clabsyqueen Tue 21-Jun-11 09:31:18

Hoorah!! What a great weight too. Lots of love

stillfrazzled Tue 21-Jun-11 10:03:49

BTW I LOVE her name.

sixer10 Wed 22-Jun-11 08:47:33

Feeling a really bizarre mix of elation and despair this morning. Elation because I actually feel like a proper mum, being able to comfort Eleanor, and because she was latching on this morning and sucking really well, and despair because there is no reason for me not to be discharged today, and I am really emotional about leaving her. We had thought there was a good chance I'd get a bedroom in the nnu, even for a night or two until my milk comes in, but these are for parents of sicker babies (fair enough) and there are no rooms available privately either. What has upset me irrationally is that we would be loaned a breast pump, but we live too far away (something about the cost of recovery if we didn't bring it back), meanwhile our local hospital won't lend us one because we are no longer booked there! Must just pull myself together ands hire a pump from nct. Clabsyqueen, how are you finding the night-time expressing sessions, and is it a wrench to leave charlotte at the end of each day?

clabsyqueen Wed 22-Jun-11 09:32:53

Hi sixer, I totally understand the horror at leaving. We live 10 minutes walk away from UCH so it feels almost as close as being in the building. I go over in the morning til lunch then back after lunch out in the real world and then in the eve the OH goes over but it is so nice to know i could be there quickly. There was talk of moving us to a hospital which is a tube ride from our house but in our borough (she is a westminster baby and UCH is Camden). I COMPLETELY broke down in the NICU!! We are not moving now but but that kind of gives me a clue how you must feel. Sooooo hard. I know as she gets older and is more aware of our presence I am going to find it harder and harder to leave. The only thing to think is that soon she will be home with you 24/7 and will never remember any of this. You can have her strapped to your chest all day!

clabsyqueen Wed 22-Jun-11 09:40:12

I also sobbed about the pump as I had spent 4 days trying master the one lent by the hospital and it was hard hard work with my frazzled brain. The idea of getting a new model made me despair and sob on the consultant! It is very easy to rent them - do it now and you'll feel good that you've done something and safe in the knowledge that you don't need to 'hand it in' when you move hospitals.
It's so good that she's latching on and sucking. That's lovely. I can't wait for that challenge. I have heard that there is a skill to this part of the process and that the hospital should be cup feeding instead of bottles to avoid nipple confusion or something. We are up to 1.5ml an hour of milk now! So pleased as in the night time I get about 20ml only. Try to do one about 9pm then 12am then 3am then have a long sleep til 8am ish. This breaks the rule of don't wait more than 4 hours but have just got a record 80ml out so it shows rules are meant to be broken! Keep in touch sixer

stillfrazzled Wed 22-Jun-11 13:43:02

Sixer, I made DH take me to Tesco after they finally kicked me out of hospital (I refused to leave so they let me stay an extra day). I couldn't face walking into my house without DS2 sad.

It was awful, so I do understand. If she's trying to feed and sucking already she must be doing spectacularly well, though and hopefully will be home with you where she belongs, very soon.

Is she still having milk via an NG tube? That's what my SCBU did until DS2 was ready to try bf, and I think part of that reason was to avoid nipple confusion.

Clabsy, sounds like Charlotte's doing brilliantly and so are you - 80ml at a time is brilliant. I did about the same timings as you, and the longer break certainly didn't hurt my supply, either. How is she otherwise (weight, stats etc?).

clabsyqueen Wed 22-Jun-11 15:30:03

Baby Charlotte stats: moved to special care today, 2ml an hour feeds, 676g (up from post birth weight loss of 640g phew!). They said as she gets more milk growth should increase. Fingers crossed. Starting to feel more like a mum as I do Nappies and cuddles ( which has the most painful effect on my nipples. Youch! Heard about this but it has to be felt to be believed.) starting to relax a little and trying to settle in for the long haul. Hopefully the news will remain boring for many weeks.

WillbeanChariot Wed 22-Jun-11 18:12:54

Special care! Wow that is spectacular, she is one strong girl. Well done on the expressing clabsyqueen sounds like you are doing brilliantly. It does sound like you are settling in, you get into a weird sort of routine don't you? I read about the cup feeding too but only one nurse ever did it with my son. We were there so long I felt I had to pick my battles but as it happened my son latched happily on to nipple or bottle so we were lucky. I did try to resist him having too many bottle feeds. They had particular sorts of teats for the breastfeeding babies that helped (this all happened at our second hospital rather than UCH- they may do the cup feeding there I'm not sure).

Sixer I can so relate to how you are feeling. I wept all the way the first time I went home. There is nothing you can do but get through it. I hope it won't be long before your little girl is home with you. Have you been able to sort a pump out?

EyeoftheStorm Wed 22-Jun-11 19:46:42

Have been lurking on this thread and so pleased to see the girls have arrived and are doing so well.

DS2 was born at 30 weeks and had tube feeds and expressed bottle feeds until we left SCUBU. Didn't breastfeed until he was almost term and safely home. He was just small and easily tired - the bottles were easier for him and once he grew, he took to the breast.

I worried and worried about nipple confusion and there was no need. Ladies, you are doing brilliantly with expressing. I'm really rooting (no pun intended) for you and your DDs.

stillfrazzled Thu 23-Jun-11 21:05:07

So glad she's putting on a bit of weight, and I know what you mean about starting to feel like a mum. She's in no doubt already, BTW - I bet her heart rate and breathing slow and oxygen rate goes up when you hold her? DS2's vital signs changed quite a bit during kangaroo care, it was amazing.

clabsyqueen Thu 23-Jun-11 22:55:59

Eyeofthestorm - this thread has had some lucky breaks so far. Long may it last! How long was your LO in SCBU?
To all the ladies on the thread - what was the going home weight of your LO?
Charlotte update: 10g weight gain yesterday but food increases have stopped as she needs a bit more time to manage 2ml an hour.
Still frazzled - during KC she does show better control of her vitals, breathing is her main one as she has a tendency to hyperventilate but this slows down on my chest however today we had cuddles for almost 2 hours and she stayed awake for almost the whole time! I was very perturbed. I thought they were supposed to fall into a blissful sleep and grow lots rather than strain to see my face for 2 hours! My OH says I have bad breath maybe that's why she didn't sleep :-/
Feeling slightly traumatised by the whole event today if I'm honest. The weeks of scans, the waiting, the worrying, the operation, the almost didn't make it feeling. Just had to leave OH in a restaurant and come home in tears. He can't really understand why I'm not jumping for joy at the way things have turned out. I feel like I have just returned from war or something! Tell me it fades.

sixer10 Fri 24-Jun-11 07:36:12

I am completely with you - my partner also couldn't understand yesterday why I had tears dripping off my chin on an hourly basis, given that the news has remained positive. Crying does seem to help my milk supply though - I also managed 80 ml last night, whilst in full flood. Eleanor is on 3ml hourly tube feeds, plus her drip. She has been so bushed the last 24 hours she hasn't repeated her latching on and sucking - I think the first priority is rather to get her off the drip as soon as she can tolerate full milk feeds. The transfer to Kingston was fine in the end - she slept through it, and Kingston NNU, because much smaller, actually seems more homely than Tooting, where I would have felt I was leaving her in a very harsh medical environment. Kingston have also lent me a pump after all, which I am slowly getting the hang of after Tooting's super high tech ones. Brilliant news that Charlotte has gained a little weight - hopefully she won't look back now! And it must be a sign of her alertness and determination to get to know you that she has been staying awake to look at your face, though I love your OH's alternative analysis - I say keep the bad breath coming, she obviously loves it!

clabsyqueen Fri 24-Jun-11 09:16:02

Glad Eleanor is nice and cosy closer to home (?). 80ml is incredible at such an early stage, well done you! It's a nice feeling to get milk, I try to remember to be grateful for that each day as some women have such difficulty and it must be heartbreaking. Glad I'm not the only one sobbing over my pump but it is quite cathartic actually. There's a lot of emotion waiting to get out!

WillbeanChariot Fri 24-Jun-11 13:49:58

Hello ladies. Glad the news continues to be positive. It can be hard when your other half is not on the same page emotionally. Another mum said to me very early on that even if your baby is doing well you are mourning the loss of your healthy pregnancy and I think that is very true and maybe hard for men to understand. If you need to cry, it can be cathartic as you said clabsy. Both of you have had a very traumatic time, maybe there is a little bit of relief there too.

I had a different reaction, I became relentlessly upbeat and optimistic almost to the point of denial, and so did DH. I think the staff thought we were insane, but I felt that if I voiced my fears I would make them come true.

Clabsy to answer your question DS was 8lb 2oz when he came home, but it wasn't weight that held him back. I think my hospital let them home at about 4lb if all was well.

Here's lots of cuddles and growing over the weekend xx

stillfrazzled Fri 24-Jun-11 14:53:26

Yes, DS2 was 4lbs the day we came home. It was terrifying!

And I'm still up and down and prone to obsessing about weight etc. You're right, I am sort of mourning the loss of a healthy pg and birth and straightforward babyhood.

BUT I do also think that we get a bonus, because I appreciate the smiles and cuddles and milestones even more this time round. Sometimes you have to really search for that silver lining grin

EyeoftheStorm Fri 24-Jun-11 16:05:52

Clabsyqueen DS2 was in SCUBU for 9 weeks but he had some complications. Bleeds on the brain led to hydrocephalus so that slowed things down for him. It was my experience that small babies who thankfully just needed to feed and grow were out of SCUBU lots quicker. Those with complications took longer but got there in the end. He is 2 now and you would never know how traumatic his start was.

When he was born, I could never have pictured where we are now - it could not be more positive.

With regard to emotions and other halves. All I wanted to know every day was: is he ok today? My DH wrung every tiny detail and prognosis from the nurses and doctors. We are very different and having a prem baby didn't change that. As long as we kept talking and allowing the other one to react differently we were ok.

DS2 was 6lbs1oz when discharged (but a lot of that was his head shock)

Millymolliemandy Fri 24-Jun-11 20:44:54

Oh my goodness, just returned to check this thread that I started what seems like years ago, and so much has been going on! Congrats ladies on the births of your beautiful girls, this seems to be an all girls thread! Have been keeping very busy with our still very little one Clementine. Just wanted to add that our SCBU didn't have a weight limit for discharge, the feeding and growing were what kept us back, and we were finally discharged at 1545g, so under 4lbs. Reading all about the incredible stress of expressing in the early days has really brought it all back - she was only born 10 weeks ago and I already feel like an old veteran.

Looking forward to hearing updates from everyone.

clabsyqueen Mon 27-Jun-11 09:37:40

Just a quick hello - uneventful here (hooray!). Slowly gaining weight (750gish I am guessing as there are wild variations in measurements depending on nurse). feeding going slowly (as expected) but now up to 3ml an hour -still well within my capabilities for expressing. Getting lots of KC which is just wonderful. Learning that the nurses are all very different in their opinions - use muslins/don't use muslins/lie on tummy/don't lie on tummy/cover incubator with a dark cloth/light cloth... Arghhhhhh! Getting more assertive as I learn about my little lady. Hope you and eleanor are going well sixer.

clabsyqueen Mon 27-Jun-11 20:18:25

Correction: 820g!! Hooray!

WillbeanChariot Mon 27-Jun-11 21:14:41

Hi clabsy glad all is well, that is great news about the weight gain.

I feel your pain about different nurses telling you different things, it used to drive me insane. It can change your whole day seeing who's on in the morning!

MMM congratulations on getting Clementine home. Hope all is well.

Sixer how are things?

clabsyqueen Mon 27-Jun-11 22:36:58

Hi MMM
10 weeks old! Congratulations. A long 10 weeks I'm sure but hopefully the drama fades and life can be quietly peaceful and alarm free! How does it feel to be in charge of a little lady at 4lbs? She is obv doing very well to be sent home whilst still relatively small. I have a feeling it must be possible to grow faster in the comfort of home. Not very scientific! I'm a bit scared I'll have to take Charlotte home while she is still weeny and the whole idea of breastfeeding is a bloomin scary one. How on earth do you know they are taking enough? There's still so much to learn but I suppose I shouldn't get ahead of myself. We are still on intravenous nutrition plus breast milk so she is still high dependency but slowly increasing her intake. anyway, congrats once again MMM.

clabsyqueen Mon 27-Jun-11 22:44:06

Eye of the storm - glad to hear that you and LO have no lasting mental scars from your SCBU time. I think I'm a little more like you in that I have completely avoided talking about future prognoses. I simply cannot think beyond the present day. If I worry about implications for her future I'll go completely mad. All that matters is today she is ok today and is settled and feeding and sleeping well.

sixer10 Wed 29-Jun-11 02:02:06

Hello again - everything (well, Eleanor) going extremely well. She is out of the incubator, off the canula, and off all the monitors apart from the apnoea. She can breast feed, to my amazement and delight, even though so small. She hasn't regained her birthweight yet, but is being stuffed to the brim every 3 hours by tube, so we are hopeful that she will now start to gain. Great news of Charlotte's steady progress - what a star! I too have noticed quite different approaches from nurses - one yesterday appeared not to believe in kc, telling me that E needed to stay in the cot, and if she gets used to me holding her she will be more upset at night when I can't be there. I thought actually I would rather that, than that she becomes completely institutionalised and doesn't know who I am!

I'm also a bit worried to hear that with only very rare exceptions, babies tend to go home on a mixture of breast and bottle. I really want to breastfeed, especially as she seems to have no problems with it. I can see we will be in a bind though if it means her weight will drop and she has to stay at the unit longer. Are any of you able to advise please on how easy it is to re-establish breastfeeding if it has been necessary to bottlefeed to get your baby home?

clabsyqueen Wed 29-Jun-11 09:34:18

Hi sixer, a challenge for you both but she seems to be telling you she can/wants to breastfeed. I have read somewhere that bottle fed babies go home sooner but also seen that many go home exclusively breastfeeding. Find the person with the opinion you want!! Charlotte had first setback - an infection. Food suspended IV fluids only. Antibiotics started. Lots of desats :-(
Was told to expect this as it's par for the course. Fingers crossed it's brief.

clabsyqueen Wed 29-Jun-11 09:37:44

Oh and what a load of BS re the KC! Again it's all personal opinion. Twice Charlotte has had a low temp and one time the nurse on charge said let's do KC to sort her out and another said no KC until she has warmed up!

stillfrazzled Wed 29-Jun-11 11:24:10

Was about to post to say how glad I was that it's going so well for both your girls, then saw your update about Charlotte, clabsy. Must be so scary - everything is in SCBU - but if staff aren't worried then hopefully it will pass quickly. I freaked out when DS2 had an apnoea episode but to them it was completely routine.

Re the feeding, DS2 was discharged EBF, as were several babies on the unit when we were. If you ask on this board (I know I've seen or maybe even started a thread about it) you'll read quite a few other stories, too. I don't think it's rare, as long as the SCBU is supportive.

It was frustrating - I came home and wept a couple of times - but this is what worked for us:
1. Making regular attempts, but not every feed as he wasn't strong enough. So maybe every other feed during the day. A long time to spend at hospital, though.
2. Trying to feed about 15-20 mins BEFORE a tube feed. So if he took some, great, and if he didn't, tube fed as normal. Also nurses could aspirate and see if he got anything (poor little thing, no secrets!).
3. Popping the nipple in when he yawned before he got the hang of latching.
4. Feeding skin to skin.
5. Rooming in - once he'd got strong enough, they stopped the fortifiers and let me stay at hospital for 48 hours with him in the same room. I didn't do much other than feed, eat chocolate, hold him and read (was quite nice actually). At the end, he'd put on a massive 15 grams so we were allowed to go home. I expect your hospital does something similar - have they mentioned it?

At the end of the day, getting home is the most important bit and if it takes a few bottles to get the girls to the point where they're big enough, then that's what it takes. I was desperate to bf, but if I'd been told DS2 would be in hospital for another month if I insisted, I'd have been reaching for the formula without hesitation.

And it isn't one or the other - I've a friend whose prem boy had some breast milk, some formula, and they were able to build up to EBF at home. She does have an older child, though, so I don't know whether it's easier because she'd done it before.

Bit of an epic but hope any of it helps.

WillbeanChariot Wed 29-Jun-11 15:00:13

I just typed a really long reply and MN logged me out and deleted it! angry Stillfrazzled's tips are very good. I came home exclusively breastfeeding- it wasn't that common at my unit but I was bloody-minded. Having said that it was not feeding that held my son back, so I may have done differently if he'd been able to come home earlier.

Once he would take all feeds orally I demand fed in the daytime and he had bottles of expressed milk at night. I had a stash frozen from earlier times, if I hadn't I probably would have mixed feeds at night I guess. When he still had the tube I sat on the nurses a bit to not give him huge top-ups if he just stopped sucking for two minutes. We ditched the bottles when we roomed in and didn't look back. Good luck!

And your nurse's comments about KC sound bonkers!

clabsy hope Charlotte is doing better today. Infections are scary but they do bounce back quickly. Fingers crossed she will be back on her milk soon.

EyeoftheStorm Wed 29-Jun-11 19:39:58

Clabsy hope Charlotte doing well now. You are on the SCUBU rollercoaster and it's hard to stay on an even keel.

I was thinking that all the DDs on this thread have regal names - Charlotte, Eleanor and Clementine - sure it will stand them in good stead.

Sixer, it sounds like your DD is doing really well with breastfeeding and will hopefully start putting on weight as she grows and gets better at it.

StillFrazzled gives great advice and all I would add is even though DS2 had bottles, it was all expressed. He hadn't had more than a couple of sucks at the nipple in his 9 weeks in SCUBU. When we got home, we went to bed for the weekend, lots of skin to skin and we were there by the end of it. I still expressed for night feeds for a few weeks to make sure he was getting enough. Then we were off and only stopped when he was 14 months.

stillfrazzled Wed 29-Jun-11 19:49:42

Meant to add, your DDs might not actually need bottle feeds - nurses told me they don't get the sucking reflex till about 36/37 weeks anyway, so makes sense to give milk via NG tube and avoids them getting too used to the bottle.

clabsyqueen Wed 29-Jun-11 23:09:18

I know that sixer is there before me but all those posts are brilliantly helpful ladies. Thank you. I have actually started putting milk on my finger for her to suck as recommended by speech therapist. She loves it! Hopefully a good sign. Charlotte infection coming down and she's perked up. Hopefully back on milk tmw.

stillfrazzled Thu 30-Jun-11 14:26:21

Clabsy, I never thought of that - what a good idea. Hope Charlotte is back on milk by the time you read this.

BTW one thing I did forget to post - although hopefully you won't make the same mistake as it was pretty silly: time your expressing and feeds carefully.

One day I spent eight hours at the hospital waiting to do two feeds (DS2 was moved to a four-hourly regime to make sure he was properly hungry and more likely to latch, which might be worth keeping in mind). I was due to express an hour before the second feed, so like an eejit I went off and did it without thinking. Only to have an utterly rubbish feed with DS2 because, I think, I'd expressed off all the foremilk which was easy for him to get and he wasn't strong or motivated enough to get the hindmilk.

I kicked myself many many times for wasting the day and cried on the bus. It's v easy to get burnt out and miserable, hospitals are weird and tiring places.

Hope you're getting some rest away from the hospital, as well as time with your LOs? It's important, however guilty you feel about it.

sixer10 Thu 30-Jun-11 16:24:43

Poor Charlotte! Hope she is now back to fighting fettle and keeping you busy with her feeds and finger tasting. I have to say I think you are inspiringly positive, Clabsy. Obviously there is much to be positive about, but talking to other mothers in the expressing room I can see that it's easy to get defeated by the grind and the succession of highs and lows, and complain about the care. I wish there were more like you!
Thank you everyone for all the fantastic advice. Basically I take it that the odd bottle now won't do any harm, or cause nipple confusion - is that the general experience? Because I've been asked today to give permission for them to give Eleanor a bottle at night, when she won't settle, as she isn't doing very well with the cup feeding. I so wish I could be here more myself, as she is learning to breastfeed well, but I am permitted alternate feeds only, 6 hours apart, and I don't think I can manage a 13-hour day at the hospital (it's currently 8).
Good news - Eleanor has regained and surpassed her birth weight now, which I hope means their might be more leniency on the breastfeeding.

EyeoftheStorm Thu 30-Jun-11 16:48:36

Sixer10 I understand your reluctance to give a bottle. I was so determined to breastfeed and I told all the nurses and was so firm about my intentions. But lack of progress and really a lack of support from the nurses ground me down. One day one of the nurses said she'd get another nurse who was good at helping mums breastfeed to give me a hand. She was the one who ended up saying - just give him a bottle.

I was gutted when he took it so well but you can see from my previous posts that in the long run it had no effect. It's not each fight you need to win, but the whole rotten battle.

I would say you and Eleanor are well on the way to exclusive breastfeeding despite the obstacles being in SCUBU has thrown your way.

WillbeanChariot Thu 30-Jun-11 21:52:23

clabsy so glad to hear that Charlotte is doing better and enjoying her first proper taste of milk.

sixer it was definitely my experience that the bottle caused no problems. The hospital offered a particular type of teat designed for the breastfeeding babies that made them work a bit harder, they were Nuk ones I think. Still I know that half the nurses used the wrong ones. Maybe I was lucky but DS was not fussy at all. The last few weeks in hospital he demand breastfed all day and had three bottles at night and it was fine.

I had the same advice as EyeoftheStorm from the breastfeeding nurse. She said once he knew what to do the hardest part was done and a bottle would be fine.

sixer10 Fri 01-Jul-11 00:28:05

Thank you both very much. We've realised today that getting E home and giving her the easiest time are really our priorities, and with your reassurance I'm prepared to work up to exclusive breastfeeding when she's home. So I rang the night staff to tell her nurse to try her on a bottle tonight, and was startled to be told "Well, she loves her dummy". I knew nothing about this dummy, and about how long the night staff have using it. E has always been very sucky during the day, seeking my fingers, her own fingers, and even the bedclothes. Now I wonder if she is like this because she has been given a dummy each night for the past week.
So, now......opinions on dummies, please?? Should I tell them to banish it? Are they even likely to follow my wishes if I do? It's so upsetting to have this going on when I feel so lacking in control of what happens to Eleanor as it is.
Sorry, Clabsy, if this is making you worry about Charlotte. I recognise that a lapse in professionalism fron one of the nurses in failing to get permission, doesn't offset the care that others have shown.

WillbeanChariot Fri 01-Jul-11 09:33:09

Hi sixer. How upsetting for you that they haven't discussed the dummy with you. That is really unfair.

DS was given one pretty early on and I said no to it. I have never liked them. I had to say no several times and have it written in the nursing notes. Then, a nurse I trusted was on one day and explained why he should have it, and asked if I would like to discuss it with a doc. I had a chat with a consultant who was a developmental care specialist and she understood my reservations but she advised he should have one so I agreed. She said it helped them practise sucking as they would in the womb and also there is evidence it reduces pain for procedures like having cannulas put in and blood tests (don't know if that is relevant to Eleanor). I also felt that if I wasn't there to comfort him then he could have whatever made him relaxed.

Anyway that is a long winded way of saying that I was ok with it once it was all explained and it was clear that it was my decision. It really upset me when the nurses were ignoring/not asking my wishes so I understand how you are feeling.

By the way my son suddenly lost interest in the dummy around term age, think he worked out it had no milk in it!

EyeoftheStorm Fri 01-Jul-11 11:59:47

Sixer10 how frustrating for you. DD1 also spent time in SCUBU (born a little early at 36+5 with some breathing problems). Writing that I feel a right old veteran of SCUBU! Anyway, a nurse rang me one day and DD1 was crying in the background and she asked me if they could give her a dummy. What was I going to say? Just had c-section so couldn't get to her to comfort her.

I had all the same reasons for not letting her have one but they all dissolved away when I heard her crying. To cut a long story short - she had dummies and bottles and we still breastfed. No confusion, no problems. My experience with her meant I always thought there was hope for breastfeeding DS2 whatever was put in his mouth.

stillfrazzled Fri 01-Jul-11 16:35:35

It's funny how different experiences of different SCBU can be. 'My' SCBU was extremely pro-bf, and as far as I could see stuck with NG tubes for babies whose mothers were trying to establish bf. The babies having formula had bottles.

Or maybe it's that Eleanor's doing so well that they think she's strong enough for bottles and think it's nicer for her than another NG tube. Was she ever tube fed?

sixer10 Fri 01-Jul-11 18:34:07

Thanks everyone - don't know what I'd do without your advice! I was lucky enough to be present this morning to hear a consultant challenge the nurses on how cautious they are being in only letting me bf twice a day. The upshot of this is that I have been allowed to bf on demand all day today, and Eleanor has managed really well, not needing tube feeding at all. I am so happy with this I have even agreed to the dummy at night, if it comforts her, and now the benefits to pre-term babies have been explained. the matron said I should certainly have been consulted - she has been given it every night since she arrived at Kingston, it seems. Anyway, no harm done luckily. Not sure whether I'd say this unit is pro-bf or not- they certainly seem keener on using bottles to get weight up, so I may need to argue my case again when Eleanor is weighed on Sunday - fingers crossed. Thanks again for all your input.

clabsyqueen Sun 03-Jul-11 04:58:43

Well done sixer and eleanor! No tube feeding for a day. I'm sure you're going from strength to strength.
Dummies - I heard all the same things as will bean did but she'd had for days by the time I knew about the benefits. Was too shellshocked to protest. I actually thinkit helped me when she had her lumbar puncture! Knowing she had something.
This is a very useful thread - I hope it will be relevant to me before long!
Charlotte now back on the up - full feeds of 5 ml an hour. No more IVor long line. Yay! I'm hoping that some weight gain will follow as she lost some due to the infection. Off to pump!

sixer10 Sun 03-Jul-11 21:15:47

Great news, clabsy - it was only last week that Eleanor was taking 5ml per hour, then the nurses ratcheted it up dramatically; she's now on 34. It's so lovely seeing the back of the horrible IV, isn't it - it's so cumbersome, keeps dislodging itself, and I found it utterly heartrending watching the nurses recanulate. Assume the canula can come out now as well, or is Charlotte taking other medication through it? What's Charlotte's weight now?

Millymolliemandy Mon 04-Jul-11 15:54:34

Just wanted to add my experience about feeding, as I was absolutely adamant that I wanted to BF exclusively; our unit were thankfully massively supportive of this, in fact, any Mums who wanted to bottle feed were actively discouraged, unless of course it was needed. Clementine was managing to suck a few times at the breast at just 2 days old (so 31 + 4) and we kept this up, in tandem with tube feeds (being IUGR, weight gain was always the biggie for us) and then tried dropping the feeds from the 180mls/kg to give her a bit of ecourangement and hunger (why would a baby contentedly being fed through a tube have any incentive to suck?), I roomed in quite early as it was always reported that she spent most of the night wide awake and rooting and it took weeks for it to actually click. Then suddenly it all fell into place and we were away. It was absolutely demoralising for me at the time, as well as being exhausted and trapped in that strange never leaving the hospital feeling, I hit a wall, but luckily kept going and am so pleased now that we are home that I did. Clemmie is slowly and steadily gaining weight (4llb 13oz today).

Hoping Eleanor and Charlotte are both doing really well. xxx

clabsyqueen Mon 04-Jul-11 16:47:52

Hello ladies, feeling slightly low here. Charlotte has lost weight for the 5th day in a row. Now at 778g. (birthweight 660g and now 3 weeks old) It seems that the extra nutrition in the long line was the thing keeping her growing. My milk alone is having little impact. She is not tolerating large volumes well so they won't put her up to 180ml/kg (currently on 160ml/kg so not far off) so milk fortifier has been started today. Trying not to feel even more of a failure. The hospital dietician is away until next week for more specialist advice. Feel like we have so far to go and have gained o little in 3 weeks. MMM you say that clementine was sucking at 31+4. I can't imagine even holding Charlotte in a cradle hold at 31+2 today - she's so tiny! I realise I must stop comparing but it's sooooo hard not to do it.

EyeoftheStorm Mon 04-Jul-11 20:28:22

So sorry you're feeling low. When you're in the worst of it, it's hard to see the light at the end of the tunnel. All you want is for things to move forward even if it's only by the tiniest amount.

You are doing everything you can. Do not underestimate what you are doing.

And no comparing allowed! I remember wishing DS2 was a girl because they seemed to get out of SCUBU way faster than the boys. Hopefully that's true for all the DDs on this thread.

stillfrazzled Tue 05-Jul-11 14:36:30

Clabsy, my DS didn't lose weight five days in a row but there were def several days where he failed to gain and/or lost, and I was equally distraught and convinced my milk was substandard.

It wasn't, of course - he's now looking distinctly chubby on it (if still tiny).

Charlotte's very very small still, she's only just getting over her infection and she's not on the amounts of milk that a full-time baby would be on, proportionally speaking. We had fortifier, too, and it eventually did the trick for us - but even on that there were days where he didn't gain and, at least once, lost.

And Charlotte's earlier and smaller than DS2 was so has a more uphill road ahead of her. You WILL get there, I don't doubt it a bit.

WillbeanChariot Tue 05-Jul-11 15:41:16

Hi clabsy sorry you are feeling low. It is very hard when you can't see progress. Just wanted to say, we had the fortifier too and it helped DS a lot. It was a slow process though and he was still only just over 1kg at seven weeks old. He stayed on fortifier until shortly before he came home and I know several babies who have come home on it. 'Poor weight gain' was written in our notes so many times. DS is still pretty scrawny and below the second centile at nearly two but he's gradually creeping up. Charlotte will get there and the fortifier will give her a little boost on the way. xx

clabsyqueen Tue 05-Jul-11 17:46:37

Thanks for the encouraging words ladies, after accidentally sleeping in til 10.30 am today life seems more much manageable. Charlotte is also much more stable today so seems to have adapted to the fortifier. I am hoping this leads to weight gain this week although they have reduced volume of milk slightly to help her manage so it's giving with one hand and taking with the other! Ps wilbean have now met Angela - very nice lady indeed.

stillfrazzled Tue 05-Jul-11 22:23:03

Glad she's settling, really hope this does the trick.

Also glad you got some sleep - sounds like you might be getting a bit burnt-out. All day every day at hospital is really really hard.

This might sound awful to you, but is there any way you could give yourself the morning or afternoon off? Slouch round at home, sit in a cafe with a magazine, go for a swim, anything that resembles normal life and isn't SCBU...? I felt guilty but it really helped me.

sixer10 Wed 06-Jul-11 18:30:24

Sorry about the recent silence - have been struggling to keep up with any communications at all this last week. And on that basis, Clabsy, I second the encouragement to have a more deliberate lie-in one day if you can manage it (and even if you can't, you still should!). My own feelings of wretchedness about placenta/milk/foreboding about the future are, I can see, directly linked to my levels of tiredness, which peaked this morning and forced me to take to bed for the day. I feel so much calmer now. We are rooming in tonight as an experiment to see how E gets on with breast feeding full-time (it seems the unit are behind it now, after all). If we manage, there is a chance we will be allowed home tomorrow, though I'm not letting myself think about this!

WillbeanChariot Wed 06-Jul-11 20:53:19

Hi sixer, how exciting that you are rooming in. That is fantastic whether or not you can go home tomorrow. I hope you are enjoying a night cwtched up with your little girl, lots of skin to skin will help the feeding. Fingers crossed for you.

stillfrazzled Wed 06-Jul-11 21:01:50

Sixer, squee! Can't believe it's happening already, bloody well done the pair of you.

Can't wait to see how you get on. smile

clabsyqueen Wed 06-Jul-11 21:05:45

Wow! Rooming in already that is fantastic. What great news. Wishing you best of luck. I think I'm going to try and do something 'normal' soon but the LO is wrestling with reflux, finally been prescribed medicine for it today but havent been able to bear seeing her retching and baulking at every feed so try to be there for her. Not sure it helps very much but makes me feel like I'm supporting her. I'm hoping the drugs work their magic on her and allow me to feel like I can be away for an afternoon/evening. I don't feel able to leave her so much because she has been moved to the lowest level of care (which I know in the grand scheme is a good thing) and that means 1 nurse to 4 babies. It's hard for them to make sure her feeds are delivered slowly and to spot when she needs a bit of suction in her mouth etc. Have definitely hit a wall this week as the threat of imminent danger has passed and the reality of a long hard slog is beginning to dawn. Will do my best to take some time out as you ladies suggest.
Sixer - enjoy the new challenge! Best of luck

stillfrazzled Sun 10-Jul-11 18:34:18

Here's hoping that sixer is getting to grips with being at home with a new baby...

sixer10 Sun 10-Jul-11 21:34:07

hello all, we were allowed to take Eleanor home on Thursday, after 2 days in a strange sensory deprivation-type room where we eyeballed each other for 48 hours beforehand. I had thought E was a very quiet baby; now all the background noise is gone I see my mistake! It's lovely to be able to hold her, feed her on demand and do whatever feels right - on the other hand, there is now of course no-one to see to her in the night, and last night we both had no sleep at all as she developed some sort of digestive problem on top of the snuffliness that she has had since she came home (evidently our home is considerably dustier than the NNU). I have today realised that eating a whole pineapple while breastfeeding is not beneficial for anyone, and have ruefully been eating exceptionally plain food all day.
Enough of my banality. Clabsy, Eleanor came home alot sooner than expected in the end - she was 36.5 weeks gestational age and still weighs only 1.6k. I really hope you may have a shorter haul than you are expecting. I totally sympathise with you wanting to be with Charlotte to make up for a certain level of care. I got increasingly paranoid about the night nurses in particular, but in the end I have to concede that Eleanor was cared for perfectly adequately and with much greater calmness than she now is at home!

stillfrazzled Sun 10-Jul-11 21:47:41

I knew it grin. Really really pleased for you.

DS2 got terrible colic once we got him home - I found out in the end that Colief was the way to go. Massive faff as you have to give it in expressed milk, and expensive (tho GPs will prescribe). Might be worth trying?

WillbeanChariot Mon 11-Jul-11 14:06:37

Congratulations sixer and Eleanor!

clabsy hope you have been able to have some time out. It is hard when you don't quite trust the nurses to have time to do everything right. But in the other hand, that must mean you are so much more confident looking after Charlotte and maybe feel a bit more like a 'normal' mum? That's how it was for me. Very very hard to leave though when you know that you know best. As sixer says I hope you have a short haul to home.

clabsyqueen Thu 14-Jul-11 02:18:49

Wow sixer! You must be thrilled and overwhelmed to be home. Love the description of the transitional care! Home at 36+5 is incredible. We have been told at least a couple of months by one consultant and 6 weeks ish by another (currently 32+3) so I'm not getting my hopes up. Will bean I saw that your LO was home 2 months after his due date. You must now surely be highly skilled in the art of being patient! we have had a tough week. Little lady was anaemic and it took 3 days to spot it. She turned into a pale bag of bones in front of my eyes (heartbreaking) and was transformed back to my wriggly little frog (as the nurses call her) by the blood transfusion in under 4 hours (incredible). The miracle of blood. Give some folks! This week's challenge is again reflux but the docs won't believe it and keep taking her blood to double check for infections. I see another blood transfusion on the horizon. We are now at 956g so almost at the big KG!!!
I am soooo pleased for you sixer. Please keep updating about your experiences. I am off to buy a new Hoover tmw following your dust comment.

clabsyqueen Thu 14-Jul-11 02:22:23

Have just conveyed 1.6kg to pounds. OMG!! 3 and a half pounds!!! What a feisty little lady to feed and stay warm at that size. Hooray for the feisty ladies on this thread!

WillbeanChariot Thu 14-Jul-11 09:33:22

Yes I think my DS was sent to teach me patience. He took forever to get off the ventilator and then CPAP, it was painfully slow. That's why I'm always so pleased to hear when babies are doing well with their breathing. I remember DS's blood transfusions, they make such an amazing difference. YY to give blood! I always did and DH has been inspired to start since DS came home.

Sorry you have had a tough week. Reflux is a weird thing. Although DS was finally diagnosed with it and reated for it I'm not sure he truly had it, it was just something to try when they had tried other things. I hope Charlotte has a better few days now she's had blood.

EyeoftheStorm Thu 14-Jul-11 16:27:14

Clabsy I am reading your posts and looking at DS2 who turned 2 today. He is building a tower of blocks and taking great pleasure in driving his massive ride on digger. In my mind's eye I can see him in the NICU - 5 lumbar punctures, infections, reflux that meant he was the only baby still on apnoea monitors in the special care room, hydrocephalus that led to neurosurgery at 5 months.

When people with prem babies told me it would be alright, I actually didn't believe them. I couldn't imagine that given everything he'd been through that it could ever be right again. But it is - he is a joy.

You and your daughter have come unbelievably far - nearly 1 kg!

clabsyqueen Thu 14-Jul-11 23:03:42

Ladies, thanks for your words. I am looking forward to reflecting back on this time and thinking you were all so right - it gets better and 'normal' life lies ahead of us. I am back in the swing of the routine after the wobbles of last week. A calm day was had today and so I am enjoying every 'highly saturated' minute of it! Will bean your words still ring in my head - enjoy the good because you really feel the bad. I have taken note and have a glass of wine in hand! I looked at Charlotte face to face (impossible to do with KC) for the very first time today as I had her swaddled in a blanket for the first time. Was so lovely not to have plastic between us. Brought tears to my eyes (nothing unusual there). I was struck by how long and narrow her is and when I joked with the nurse she said yes - one of the docs calls it toasty head because it looks like a slice of toast! I did laugh but I'm hoping that her head reshapes itself slightly at some point as I might not be laughing about it for long! Will be back when we reach 1kg. I hope it comes before the next hiccup.

clabsyqueen Fri 15-Jul-11 21:41:20

1kg Mark has been passed!!! Hooray!

WillbeanChariot Sat 16-Jul-11 11:07:27

Hi clabsy, congratulations Charlotte (or toasty head!) on passing the 1kg mark! By the way, I had the same worries about my son having an odd shaped head, it's perfectly fine now. I think most prem babies get a bit of a squashed head but they grow out of it.

I'm so glad you are having a good few days and making the most of it.

sixer10 Wed 20-Jul-11 16:20:27

Hello, v sorry for the radio silence - I have had to forbid myself from turning on the computer until I finished my final thank you letter. My productive time each day seems to be reduced with feeding and sleep deprivation to about an hour and a half each day, which seems to be spent mainly on laundry. Catching up gradually I hope.....
Eleanor was back in hospital for 3 days last week with a distended abdomen, having given up producing dirty nappies. We've stopped her iron supplement and she seems to be back to rights, though still often red and whimpering/straining. I wonder if she has a bit of reflux; as she seems worse after feeding and if we put her on her back. Eleanor isn't gaining weight as fast as she should, so I've also been told I need to correct her positioning and let her feed for longer. The upshot of this is that there is no time when I'm not either feeding or holding her upright. Still, if it helps her get stronger it's worth it. Clabsyqueen your post made me snort coffee out of my nose (like daughter, like mother...) - delighted that Charlotte has passed the kilo mark and I'm sure her toast-like head will rise in due course! I still get the giggles slightly looking at Eleanor's backside, as she has literally no buttocks at all, just a flat panel like a soft toy. Anyway, enough of laughing at our poor daughters...

clabsyqueen Wed 20-Jul-11 20:25:37

Well done on the thank you cards sixer! Even with all the post-scbu hiccups. Hope the breast feeding is going well following the adjustments (mental note taken). I was in 2 minds about whether to get some hours of sleep under the belt or go back to the hospital - you've helped me me make my mind up. I'm off to bed while I still have help! Only just turned Lottie over this week to observe the no-bum situation, as observed by my other half. Very strange indeed! I'm going to concentrate on shaping her head for the moment. Update: canula free and gaining weight sloooooowwwlly. 1030g. Grateful for these quiet times. :-)

clabsyqueen Sun 24-Jul-11 18:02:01

Update here: nipples destroyed (onto my 3rd brand of nipple cream) and morale not much better! Lottie has lost weight 4 days in a row and they are not reviewing her diet until weight review on Wednesday (currently only on EBM) She might have disappeared by then! This does make me worry about her feeding when she leaves SCBU. if EBM is not nough for her now why will it be ok to go home just on EBM?
On the bright side the little lady is now wearing little baby grows which is so nice for me, showing lots of interest in the nipple (too much in fact as she won't settle during skin to skin - roots constantly) and is seeming more and more alert and can even lie on her back for some hours of the day. I'm hoping the back lying will help the toasty head! I must also be grateful for every canula free day of course. We have at least 8 more weeks ahead a nurse said today. Week 6 almost completed. Hooray!

EyeoftheStorm Sun 24-Jul-11 21:57:45

6 weeks! Did the nurses give you any ideas why she has lost weight? Is it because she is using lots of energy to feed?

Keeping to SCUBU's schedule was often frustrating. It must not be worrying them though, that your DD has lost weight, otherwise they would do something wouldn't they? And what I mean by that is that they must be happy with how well she's doing overall (toasty head notwithstanding!)

stillfrazzled Mon 25-Jul-11 16:49:55

Clabsy, ouch on the nips - if she's rooting constantly, you're in pain and she's not putting on much weight, has anyone checked your latch? Apols if really obvious and already tried. Can't believe it's already been six weeks.

Sixer, am also v impressed on the thank you cards smile. Know what you mean about the no-bum, I got a bit obsessed with DS's. He does have one now, though, honest!

amymouse Mon 25-Jul-11 21:11:54

Hi, I've followed this post and congratulations on your babies. My daughter Alice was born last September at 27+6 weeks and spent 9 weeks in SCBU. I was originally told we would spend at least 12-13+ weeks in hospital but at 9 weeks the unit decided that there wasn't anything that could be done there that couldn't be monitored through community care at home.
Clasbyqueen, regarding feeding I would try not to worry. BFing would be adequate on discharge because a term/nearly term baby's nutrition needs are very different from a prem. It might be that they decide to fortify your EBM or mix-feed before discharge but this does not mean you will go home doing this as by then Charlotte would be significantly stronger than she is now. In my unit I was told that the fats and nutrients that help babies to acquire that lovely chubby look happens in the last weeks of pregnancy so it could be for these next week they have to add some nutrients, calories and iron to EBM. This doesn't mean your milk is inadequate at all, just that while your LO is still small she just needs the equivalent of a million cream cakes! I didn't express as had milk problems, but in my SCBU it seemed that the mums of later-gestation babies went straight to BFing/EBM only but mums of earlier babies fortified EBM for some feeds, especially when they were not present to practise BF and/or used a special prem formula for a few weeks until the weight had shot up. Every case is different though and these babies are a nuisance at worrying the living daylights out of you! They are very naughty at going through phases and then just as quickly being fine and dandy.
Re the using energy thing, unfortunately it can be one of those one steps forward and two steps back. sometimes they need a bit of extra help, eg short term oxygen to take the pressure off or less handling for a few days to optimise the energy. Again though, each case is different and they won't do anything they don't need to. Excellent about the rooting! Alice used to eat her sleeve or my jumper instead-odd girl.
Hope tomorrows review goes well smile

clabsyqueen Tue 26-Jul-11 16:11:37

eye of the storm /still frazzled, LO still on hourly feeds with a syringe and NG tube so hardly exhausting for her! All nipple action is strictly non-nutritive. We are a long way from breast feeding as she is still in an incubator and can't hold any body heat for very long so has to be swaddled to within an inch of her life or hastily put onto my skin to keep her warm. Some nice fat should help that soon. temperature control has been a big problem, I realised that she had spent 3 days being slightly chilly! Can't help weight gain. There has been some and is now 1090g. They have suspended daily weigh-ins as I was mostly crying through it! It is such a relief to not have to follow every gram.
Amy Mouse - that is a very reassuring explanation thank you so much. Makes perfect sense. Well done getting out of there sooner. You must have been relieved and terrified! I'm expecting the same combo!

stillfrazzled Tue 26-Jul-11 22:50:41

Ah, I'm sorry - showing my ignorance. Glad they've laid off the weigh-ins for a bit, they are horrible horrible moments. I've wept over 10g before.

DS2's consultant was very keen on babies doing non-nutritive sucking, but I guess if she's just chomping rather than latching, that accounts for the soreness. Have no idea what you'd do about that, maybe someone like tiktok could advise?

sixer10 Fri 29-Jul-11 22:51:53

Clabsy, it's great to see the back of the horrible canula, isn't it? I really hope I never have reason to see an IV line near Eleanor again. Charlotte sounds like a bright button, rooting away albeit non-nutritively. I can back up Amy Mouse having seen earlier given fortifiers whilst Eleanor and others were not, even if weight gain sometimes also stuttered.
We are fully into the homebound thing now, with all that entails. Eleanor has been back to hospital with a swollen abdomen and lack of poos, and she is keeping us very much on our toes tonight with heart wrenching sobs which seem also to be gut-related - she's had over 24 hours without a dirty nappy now. It sounds so trivial, being constipated, but the poor creature is expending so much energy pumping her arms and legs and wailing that I do panic slightly, and she is inconsolable. Probably I should seek advice on another thread but I tell myself if she weren't so tiny I wouldn't worry so much. Sorry Clabsy to complain despite having her home - I'm afraid the worrying hasn't quite stopped yet!

clabsyqueen Sat 30-Jul-11 00:16:40

Oh sixer, poor you and poor Eleanor. Constipation and distress doesn't sound trivial at all. In fact it sounds like she's having a tough time. I'm afraid that this thread has probably outlived it's usefulness for you in this regard so I won't feel abandoned if you start a new one elsewhere! Keep visiting though! Your posts are helping me to change my approach to home coming. Although I am very much looking forward to it, I am no longer seeing it as "an end" because of course it's only a beginning. I am hoping a realistic attitude will help take the sting out of the inevitable hiccups that will ensue. I have purchased a super Dyson to combat the dust you mentioned, wedge mattress for reflux as well. Where is Eleanor sleeping? I am worried about having a tiny baby in moses basket with blankets/huge sleep suits. If you have a spare minute then please let me know how you LO sleeps. Best of luck with the bowels!

WillbeanChariot Sun 31-Jul-11 18:02:37

Hi sixer sorry Eleanor is having a bad time with her belly. I have seen advice elsewhere on here that it is pretty normal for a breastfed baby not to poo for several days sometimes, though obviously it must be horrible to see her in distress. Baby massage helped DS to poo, might be worth a try? I used to massage his lower belly in sort of clockwise semi-circles, one of the NICU nurses showed us. Hope she settles down soon.

Clabsy I am so pleased Charlotte is doing so well, those tiny steps forward are really building up. Hope she has put on a bit of weight this week. I think DS was about 1600g when he could maintain his temp and come out of the incubator. Hopefully it won't be long for Charlotte.

DS slept in a Moses basket next to our bed in a small Gro bag I think.

clabsyqueen Fri 05-Aug-11 16:09:36

Quick update: Charlotte doing well despite severe anaemia. She doesn't seem to have realised this yet an is showing no signs of tiredness despite the numbers on her chart! She is showing lots of interest in sucking an we have had a couple of successful breastfeeding sessions although at 1.260kg she is not stopping the fortified tube feeds any time soon. Plodding on quietly in this way is the best possible outcome we could have hoped for. I feel very lucky. Can't believe she is over 7 weeks old already. I realise what everyone says about children growing up so fast is true! Hope you are all enjoying the summer holidays and strange weather!

EyeoftheStorm Sat 06-Aug-11 17:37:36

That's great news. Like you say, the best possible outcome and long may it continue.

clabsyqueen Sat 13-Aug-11 20:31:55

Well ladies, within the space of 48 hours we went from choosing baby grows for her new life in an open cot and practicing breastfeeding to an incubator in intensive care, nil by mouth and a diagnosis of NEC. The thing I have feared all along. I just pray it doesn't come to surgery. Heartbreaking and exhausting, especially as I was gearing up for home after almost 9 weeks here. The proverbial roller coaster continues :-(

mrspear Sat 13-Aug-11 20:54:41

Hi Clanbsy

I am so sorry for your little one. I thought it may help to hear about my DS. He was born at 30 weeks exactly and weighed 1.5 kg by day four his weight had dropped to 1kg and NEC was diagnosed by day six he had a deep line put in which gave him TPN (via a pump drive)which bypassed the digestion system to allow a chance of recovery and he was also on three types of antibiotics which were given via the cannula. I will be honest it was a very rocky road and we had one very very bad day which even now is painful to think of BUT he did get better. It took just over two weeks and he didn't require surgery despite how sick he got. We also found that he required CPAP allot more - this is normal as his body needs to concentrate on fighting the infection and not on breathing therefore it is a good thing really. And the good news is that three weeks after the TPN was stopped he was home! He is now a typical 22 month old into everything and is just fine (except the 40% hearing loss but that is NOTHING to do with NEC)

BTW a baby opposite did have to have surgery and she did come through OK although i do not know the in's and out's

Good luck to your little one and big hugs to you and your family

Any questions please either here or by pm

clabsyqueen Sat 13-Aug-11 23:05:12

Mrs pear, thank you so much for sharing your story. I hope we get through this quickly and with a positive outcome too.

amymouse Sun 14-Aug-11 09:05:42

So sorry to hear this, come on Charlotte! We escped NEC but one of the babies in my unit had it and surgery; despite surgery he came out just 2 days after us, fit as a proverbial fiddle. I don't experience of surgery but have had Alice go backwards and forwards including a post-discharge intensive care stage that got very rocky very very quickly and included a test run of all kinds of support available;it might look like they "regress" when ill, but as Mrs Pear said, they need to divert energy to concentrate on zapping the nasties. It is amazing how quickly they can bounce back after. Be kind to yourselves, just take each day, be completely selfish and stock up on biscuits. If you need to talk to someone, most hospitals have a chaplain (some 24 hours) whom you can wander into and have a weep, and if you're lucky, a cup of tea. They might also have parent accommodation so you can stay on the hospital site so you aren't far away in this difficult time. Thinking of you x

clabsyqueen Sun 14-Aug-11 11:58:13

Thanks for the kind words Amy mouse. I'm going crazy thinking it was her immunisations that started this awful chain of events (now ventilated and on morphine for pain). Argh! Going to start a new thread on it.

sixer10 Mon 15-Aug-11 15:59:47

just wanted to add positive vibes for Charlotte, willing her to get better as speedily as possible. We're looking forward to exchanging experiences of the outside world, so hope you'll soon be over this and making great strides again xxx

sixer10 Mon 15-Aug-11 16:16:27

Sorry, Clabsy, you asked where Eleanor sleeps. To be frank, primarily she sleeps on me as I try not to nod off sitting upright! But we do settle her in the Moses basket occasionally. We use one of those head-bumper things that you may have already bought as an insert to the size 0 car seat (if not, the sunshine kids one we got from amazon is good), and once she's tucked in feet to foot with that at her head, the space doesn't seem to swamp her. I put a pillow under the mattress to raise it up so it is less far to drape a hand over to comfort her in the night. And Sometimes I swaddle her if she's very unsettled, using a small jersey blanket (following demo on youtube).

WillbeanChariot Mon 15-Aug-11 18:46:48

Oh poor Charlotte, and poor you. I hope the antibios do the trick. DS had suspected NEC after birth although never confirmed, and the antibios did the trick. All those weeks getting strong will have put Charlotte in a really good position to fight this.

Wishing you all the best.

clabsyqueen Wed 17-Aug-11 21:33:27

Hello all, news is that the gut specialist from GOS says that it's not NEC. I'm torn between being relieved and upset as she does not escape the intensive treatment of long line, nil by mouth, 3x antibiotics as once it's started it has to be finished. The conclusion is: iron supplements for anaemia= constipation, anaemia= raised heart rate, imms= raised levels of infection markers in blood. Result=total panic in the doctors!! Totally exhausted and stroppy with the nurses but have finally accepted our lot and stopped crying on everyone.
Sixer sounds like you are having a whale of a time with the sleeping arrangments ;-) I cannot wait to try out the various arrangments you are experimenting with. Thanks for the description - gives me an idea of what to expect. LO now weighs 1.5kg I still cannot imagine taking her home so small. How is eleanor's weight?

WillbeanChariot Thu 18-Aug-11 13:58:25

Oh clabsy how stressful, poor Charlotte having to go through all of this. Thank God it's not serious NEC though. How long is her course of antibios? How is she doing with her breathing?

And poor you it must be so frustrating after coming so far. 1.5kg is a great weight. I hope Charlotte is feeding and back in her open cot soon.

EyeoftheStorm Fri 19-Aug-11 19:35:25

So sorry that you and Charlotte have been through that on the homeward straight. It's like having the rug pulled from under your feet. I found it very hard to come down from the stress and adrenalin-rush of something going wrong and I did the wrong thing in pushing that feeling down and putting on a brave face because I had two older DCs at home and didn't want to worry them.

I hope you have lots of people to talk to about how you're feeling, as well as coming on here. Crying on the nurses sounds very healthy!

clabsyqueen Tue 23-Aug-11 08:41:05

Hi ladies, LO still very much in no mans land. Antibiotics finished and long line still in as she struggles to resume feeding. Weight doing brilliantly as you would expect with a long line - 1.8kg. Something to be grateful for, also she's not in pain anymore and breathing unaided. For 3 days they have tried every combo of feeding to kickstart her guts. Hourly/2 hourly/4 hourly/breast/tube. All milk is returned undigested. Could be a matter of time or maybe some damage done during the episode last week (NEC resuspected!). I am seriously thinking of resorting to prayer! And I'm a bloomin' atheist! 10 weeks in today. Give me strength!

WillbeanChariot Thu 25-Aug-11 15:13:17

Hi clabsy. Hope you are hanging in there ok. Any milk kept down yet?

Thinking of you and Charlotte.

clabsyqueen Thu 01-Sep-11 01:30:58

Hi will bean, we are ok here. Milk seems to be being tolerated but has taken 11 days. Up to 3 hourly feeds after 7 days. Tummy blew up - got an an x ray and a subsequent flouroscopy (barium enema type thing poor love). Anyway finally can say no bowel damage so no surgery needed ('at present' they always like to add). She is full of air they could see. We are Slowly building up the breastfeeding after her third blood transfusion perked her up no end! I'm so jaded by all the medical procedures. I think that the breastfeeding is exactly what she needs as she passes wind continually throughout which must be a relief for her and it really helps her bowels to open. So much better than tube feeds. I am going to push for demand feeding soon I think. Weight gain has dropped off as you would expect with the stop start feeding regime. Not worrying about that as she seems huge at 1.9kg! I hope to have THE NEWS we all want to hear sometime soon but her 12 week injections are on Tuesday next week and they seem to love going nil by mouth and giving antibiotics at the drop of a hat! let's hope not.

sixer10 Thu 01-Sep-11 04:04:53

Hi Clabsy, I left a message for you last week (or thought I did - I can only think I must have entered it at the bottom of some other random thread which will have caused some confusion! Sorry. The gist of it was that I have been re-reading this thread and noting your incredible patience and bravery. Charlotte has shown great strength of character too, pressing on through all manner of obstacles. Eleanor is just lying across my lap having 'enjoyed' a tummy massage (she doesn't mind it really) which really seems to help with the inflated abdomen. Clockwise rotation below the belly button (although the area is too tiny to stay entirely below the navel) with both sets of fingers: left hand moving in a constant circle applying particular pressure on (her) lower left side, where the colon ends. Then when the left hand is at 5 o clock the right hand jumps over to start at 9 o clock and do a half circle in tandem, then coming off and repeating when the left reaches 5 o clock again. Holding calves together and pressing knees into chest repeatedly often produces a pleasing volley of gas also (oh how my pleasures have changed!).

clabsyqueen Sat 10-Sep-11 13:30:43

Oh sixer! How reassuring to hear that we are not alone! We have learnt to 'play the charlotte' over our first 12 hours at home! Yes!!!! Home!!! Pushing knees to the little ones chest does indeed produce some fabulous sounds and resulting relief in the little lady.

clabsyqueen Sat 10-Sep-11 13:33:11

I have also discovered the incredible range of sleeping noises she emitts. So disturbing that I left her with dad and slept on the couch. I'm sure it's meant to be the other way around. Our stay in hospital has made it very easy for me to sleep without her!

EyeoftheStorm Sat 10-Sep-11 20:47:21

Fantastic news that Charlotte is home. I always felt we started afresh from then on. Enjoy your noisy, no longer toasty-headed(?) daughter.

WillbeanChariot Mon 12-Sep-11 14:46:49

Oh clabsy congratulations! I have just shed a little tear at this news. How far you have all come, and you have had such a tough time. Well done Charlotte you amazing girl. Hope you are enjoying her.

sixer10 Sat 17-Sep-11 15:31:05

We have just done a little dance for joy for Charlotte (slowly, obv, cos of the reflux!) How are you finding it now? Do let me know your current sleeping arrangements - ours are even now a work in progress; latest novelty is the introduction of the car seat. And how are you finding the reception of strangers when you take Charlotte out? Do you enjoy the attention or find it annoying? Hope you are enjoying feeling properly close now. X

clabsyqueen Sat 17-Sep-11 21:21:53

Thanks for your well wishes ladies, youve been here all the way. Makes me very emotional actually when i reflect.
Hi sixer - how am I finding it? Very very hard indeed. Not much in the way of pleasure I'll be honest. Glad to have her home obv but it's hard hard work. Managing the reflux with constant holding/angling, managing the constipation and wind with hourly tummy massages (feels like hourly anyway). There are very few moments when she is not grunting for some reason.

clabsyqueen Sat 17-Sep-11 21:26:30

The drugs/vitamins I have to give add up to 14 syringes per day. Exhausting and usually leads to a vomit if I get the combination wrong.
Little lady did not settle in Moses basket so now using the lower portion of a phil and teds double buggy. A sort of baby holdall if you will. Have put a snug inside and then swaddled her. Breaking all the SIDS advice I know. She only weighs 2kg and needs to be cost I think.

clabsyqueen Sat 17-Sep-11 21:30:13

(cosy that was) A car seat sounds like desperate measures! I have taken to putting the baby holdall on the bed next to me(OH in living room) so I can see/touch her easily and interpret her grunts more easily. Am posting short messages as she is on my chest and may demand attention at any minute.

clabsyqueen Sat 17-Sep-11 21:37:45

Strangers: not been out much but if so she is usually in a sling strapped to my chest or dads chest. Have had a few horrified looks (she has yellow skin from TPN jaundice but blue eyelids - not a good look) but usually lots of coos. Everybody thinks she's tiny but they can only see her head (25th centile) it's her body that is shockingly small (0.4th centile). If only they could see! Am worried about producing milk and growth today. She is gaining weight but slowly and has very erratic eating habits. Community nurse has suggested putting nutriprem powder in her night time bottle ( given by dad to help keep me sane). she has also said I mustn't stop expressing until she she is 2.5kg. It's very stressful trying to guess if she has finished feeding or is going to wake up ravenous.

clabsyqueen Sat 17-Sep-11 21:44:15

Phew. Im sure we will get there in the end and by 'there' I mean a contented grunt free little lady. Oh - meant to say our best night sleep was had when I bought a White noise app for my iPhone and played it to her. She loved the Doppler ultrasound option! Went into a trance! Then I panicked about having a phone near her head whilst her brain is developing. Never ending worries!

sixer10 Fri 23-Sep-11 15:05:27

You are well ahead of me - only discovered White noise (she prefers pink actually, which is more industrial-sounding - not a flattering reflection of my internal body noises!) last week, after a horrible day of inconsolable crying. Impressed that Charlotte's head is so big - Eleanor's is still on the 2nd centile.

sixer10 Fri 23-Sep-11 15:43:49

I hope you have a good support network nearby, or at least some company while you are working out the 14 syringes. I am having real problems also at the moment determining when a feed should be over - when the hungry cry turns to an overfull, reflux cry. I feel so terrible when I get it wrong, and she has 3 hours of pain that sometimes sets us up for a whole day of it. It's going to be a major celebration when we are grunt- and curdled-milk-free! In the meantime, a mum told me that the feel good hormone released by breastfeeding /expressing is also responsible for making you feel thirsty - so I have been trying to note that when I am breastfeeding and thirsty it's because I am blissfully happy!!

clabsyqueen Fri 30-Sep-11 11:51:51

2nd centile for head sounds like your little lady is nicely in proportion. Charlotte's head is causing some serious trouble in the arduous physical challenges being set for her: she can't bring her head with her when lifted by the hands and she can't turn it when lying on her back! We've got some serious work to do but I've also been told she must not waste calories on exercises at the moment so she gets to lie indolently on my chest for most of the day (she is actually very cute when not grunting/straining/lolling - I make her sound like a monster!) In my quest for contented sleep for the little lady I continue to disregard SIDS advice and have put a pillow in her Moses basket. She LOVES a pillow but getting the right angle to stop reflux is tough. Syringes are now down to 8 a day! And yes I have lots of lovely family to fetch/wipe/hold/burp. Couldn't have coped without them As OH very busy at work.

clabsyqueen Fri 30-Sep-11 22:50:31

Meant to say I totally sympathise with the challenge that is interpreting cries. It has taken me 3 weeks to spot the "I'm tired and just want a cuddle" cry. Up until then I was practically force feeding her thinking she was hungry but couldn't quite latch on! Oops. Poor girl.

clabsyqueen Tue 04-Oct-11 17:41:22

Will bean, efes light... All the ladies on here... When did you wean your little one? I swear my lady seems interested/almost ready! Only weighs 5lb4oz but it won't be long im sure. She is 4 months actual in 1 week.

Millymolliemandy Wed 05-Oct-11 15:10:25

Ooooh, weaning!

Delighted to read that everyone on the thread is doing so well, occasionally get the chance to check in a rare quiet moment when Clemmie has decided to will sleep in her moses basket!

Clemmie is now 15 weeks corrected or 24 actual (frightening how quickly time has passed!) and just past the 5kg mark, thinking it may be time to crack out the carrot puree and so went to a talk on the subject of weaning preterm infants last night. Advice seems to be to wean between 5 and 8 months actual, but to look for cues like putting hands in mouth and an interest in food.

So, will be most interested to see what others have done. I think the time may be approaching, but it seems awfully grown up for such a little person!

clabsyqueen Wed 05-Oct-11 18:31:31

Hi MMM - clemmie is 5kg! Wow! Brilliant! Im impressed you got out and about for a talk. It seems ludicrous that I'm talking weaning at 2.4kg! Gave her mashed banana today and she loved it! No vomiting or choking - result! Going to try one thing a day for a few days although she is now writhing around on my chest in great discomfort but that's par for the course.

WillbeanChariot Thu 13-Oct-11 13:45:24

Hi there. Weaning is totally bizarre with a prem baby I found. There is a really good booklet on the Bliss website, or they may have given it to you in the going home pack. I was advised to try before six months actual, and DS was only about 8lb. I have always had to give him high calorie food and got some weird looks for feeding chocolate desserts to a baby who appeared newborn. He never took to food in a big way and it is still tough to get him to eat enough.

I used to feed him in his car seat or on my lap as he couldn't hold his head up. Hope Charlotte is still enjoying her banana.

sixer10 Mon 17-Oct-11 06:59:08

It seems extraordinary to have reached this point already! I confess it hadn't occurred to me to even look for signs of readiness yet. Eleanor will be 4 months in a week, and until now I've been thinking we would start at 6 months or even later, as she seems to have such a reaction to many things in my diet. I can see though that it might be an improvement on milk for the reflux. Hmm.

clabsyqueen Thu 20-Oct-11 12:32:13

Weaning is very strange indeed! As with most things Charlotte looks far too small to be doing any of them! Facing out in her sling is her new favourite and we've had a few comments that she's too young for it. Her smiles and giggles put them straight! Weaning still going nicely and very much encourgaed by her consultant. Baby rice, pear, mango, sweet potato etc... Trying to get the high calorie stuff in there but still only once a day. No chocolate desert yet though! Lottie hanging on the 0.4 centile at 2.7kg and going for hernia op at GOSH tmw. No respite yet for the Poor little lady. I'm dreading the 4 hours nil ny mouth before hand as she feeds every 2 hours. Going to force feed her with a big bottle in our window of opportunity. Wish us luck

WillbeanChariot Fri 21-Oct-11 15:43:33

Ah bless you, DS had a hernia scare shortly before he came home and we were shipped off for surgery but it proved not to be necessary. I hope Charlotte's op is straightforward and she is home with you soon. GOSH are just amazing and make you feel so confident, we went there for PDA op.

DS is still on the 0.4th for weight at the age of 2, he's on about the 25th for height though. Glad Charlotte has taken to her food well. smile

sixer10 Mon 24-Oct-11 16:28:18

How is Charlotte after her operation? It would be the nil by mouth that I would dread most as well - hopefully your fill-up strategy worked well. Eleanor has climbed to the 9th centile for weight, still on 2nd for height and her head is on the 50th! So am planning to continue bfing for a month or so longer if we can. I think I'll follow your example with the sling though - I know she'll love facing the right way. My only worry is that she may never sleep during the day again!

clabsyqueen Thu 10-Nov-11 09:17:24

Hi sixer - nil by mouth was hideous esp as it stretched to 6 hours due to some lost paperwork. Grrr! Op went well and recovery was fabulous.
All good here -Lottie almost 3.5kg but this still places her at 0.4th centile for weight but 50th for head! I'm very impressed by a 9th centile placement. I wish I knew what I could do to make her jump up but we are feeding every 2 hours 24/7 as it is! Expressing hind milk to make sure she gets the fatty stuff too! Oh well, she seems very healthy and happy at the moment, even sleeps silently and poohs independently! No reflux anymore and lots of chatting. She just loves to 'talk' which is sooo nice. Hates tummy time though and has the classic floppy wide arms of a prem baby but can't persuade her to use them to push up at all. I fear she will never crawl and may be a bottom shuffled instead. No big deal I suppose. How is Eleanor's sleeping now? I wouldn't have believed it 6 weeks ago if you had said she will sleep without grunting! NNU seems such a long time ago now. Weird.

worriedmummy2012 Sun 18-Mar-12 23:33:37

hi everyone i hope this thread is still going. I had low papp a (0.16) when i was 12 weeks. Have had one doppler scan showing my placenta isn't working properly. He is measuring 3 weeks behind what he should be. I have all the symptoms of pre eclampsia apart from the high blood pressure which is the only thing keeping me out of hospital. i try not to worry but its very hard
any help would be great.

Thank you smile

Bearcrumble Thu 22-Mar-12 08:39:48

Hi Worriedmummy - how many weeks are you now?

I had low PAPP-A at 12 weeks and high uterine artery PI with a notch at 22 weeks - went on to get high blood pressure around 28 weeks and DS's growth (abdo and femur) dropped behind. He came out by caesarian at 35 weeks weighing 4lb 5oz. I'd been on beta blockers since 30-ish weeks.

Are you being scanned regularly? Being seen in the consultant's clinic? Keeping a record of movements? (do go in to the maternal assessment unit for a CTG if you think baby is moving less).

Millymolliemandy Thu 22-Mar-12 20:41:26

Hi Worriedmummy, I'm the OP, sorry to hear you are having a worrying time. Are you being well looked after? If you've read the whole of this rather long thread you'll see that lots of us have been through this and come out the other side, albeit after a rollercoaster ride. Are you being regularly scanned? This was key for us. Let me know if there is anything more specific I can help with. My beautiful baby girl, who was born at 31 weeks weighing 923g is now a feisy 9 month (corrected) old crawling around and creating havoc.

I was also told (pre-20 weeks) that wonky PAPP-A readings can have no negative impact at all on baby or pregnancy. What is the plan for your care and monitoring you?

Thinking about you; know how horribly stressful it is, but hoping things are going ok.

clabsyqueen Wed 06-Jun-12 21:08:25

Thought I'd add to this thread as a year ago I was TOTALLY distraught and completely convinced I was preparing for a still birth. The ladies on here were fabulous in their support. Anyway we celebrate our daughters first birthday next week. She is doing so well I could never have predicted. IUGR placental abrupt ion and insufficiency 3 months in NNU and so full of personality and energy. We are so so lucky. Good luck to anyone consulting this thread. Worried mummy I hope things worked out

sixer10 Tue 18-Dec-12 10:46:24

An update: Eleanor is doing fine, at nearly 18 months. At least as feisty as her friends, a little bit small but developing completely normally. She was over her reflux at 6 months (a huge relief) and despite having a bit of a tendency to wheeze (not related to her prematurity or IUGR, I think) is incredibly active, and seems to enjoy life very much.

I was prompted to log on again because I am (deep breath) pregnant again, and wondering what this pregnancy has in store.....

Lovely to hear about Charlotte x

efeslight Thu 20-Dec-12 23:34:31

Lovely to hear all is well sixer, and many congratulations on your pregnancy, I had a little girl in april, she's nearly 9 months now, same problems as first pregnancy but carefully monitored and lots of drugs kept us going till 37 weeks and 4lb 11oz, so difficult times, but nothing like 28 weeks and less than 2lbs... hope it all goes well x

clabsyqueen Sun 23-Dec-12 10:10:17

Hi sixer - big congratulations! How many weeks are you? I have everything crossed for you. I've had 2 miscarriages this year - annoying but after the drama of 2011 I feel I can handle just about anything! (Having charlotte certainly helps dull any pain) Hoping to stay pregnant very soon and also brave the terrors of pregnancy after premie! Congratulations to efeslight too. What drugs kept you going? I've been prescribed 75mg aspirin and 5mg folic acid. Bog standard stuff as far as I can tell.

efeslight Wed 26-Dec-12 22:55:23

hello clabsyqueen, sorry to hear you had the miscarriages, i hope 2013 is better for you, i was on 100mg aspirin and daily injections of the blood thinner clexane, starting at 20mg a day, then up to 40mg a day

clabsyqueen Thu 27-Dec-12 19:49:59

Thanks efes - I'm a bit worried that we have been under-egging the pudding with our minimal drugs routine. My bloods all came back normal so I haven't been advised to take injections. Did your bloods indicate anything or were the injections just a precaution? When did you start on the injections?

efeslight Tue 08-Jan-13 20:25:27

clabsy, am ashamed to say we cant remember the details accurately, i was fainting and swooning at the time it was being explained...am a bit of a wimp...what i do remember was there was a slightly raised level of an antibody (are there lots of different types?) which would slightly raise the risk of clotting in the placenta, but yes, given the previous pregnancy, the clexane was really just precautionary, started injecting at about 12 weeks, then continues up to going in to hospital at 36 weeks

sixer10 Mon 14-Jan-13 20:04:05

Hi efes and clabsy, lovely to be in touch again. Sorry about your miscarriages clabsy. You seem to be pretty buoyant though, and I too feel fairly unfazed about pregnancy because I feel (mainly) very lucky already to have Eleanor here, bouncing around. That said, I am starting to wonder about how it might all play out if we have a repeat experience, but with a 2-year old at home while we camp at the NNU. I'm gripped to hear about your experience, efes - I probably hadn't really taken seriously up to now the likelihood that placental insufficiency will recur. Last time I was asked to be part of a study into whether placental insufficiency is caused by the mother's own heart - which may be perfectly up to the job in everyday life, but cannot cope with the huge demands of a pregnancy. This would suggest that it will happen again, but it's wierd how I managed to forget anything we may have been told about likely recurrence - I think I was so focused on the current perilous situation I didn't care at the time if I never had another baby, if I could just deliver one successfully.
I'm only 10 weeks so far, but have a scan next Wednesday back at St George's, to see what action may need to be taken. I've been taking aspirin anyway since week 6, because I remembered that it was too late last time, and thought it would do no harm. Will ask about clexane for sure.

clabsyqueen Thu 24-Jan-13 20:28:16

Well sixer we must be similar weeks, As we have just made it to 12 weeks and will be getting our second little one in the summer all being well. I got pregnant straight after second miscarriage (a small bit of luck!) On aspirin and slightly nervous. I wonder what our pregnancies will hold. Docs have said 'the odds are on your side'. Meaning that we are unlikely to have another case of placental insufficiency and if we do its unlikely to be as severe. I was happy with that until he refused to talk about the 37 week c section plan that was bandied around in our consults after the IUGR pregnancy. He said 'if you get that far we will talk about it then'. NOT what I wanted to hear. Good luck for your scan sixer and thanks efes for the details.

clabsyqueen Thu 24-Jan-13 20:30:20

Lets hope that we both have the luck of Millie Millie Mandy who started this thread and her second just before Christmas.

efeslight Sun 24-Feb-13 21:51:07

Hello to clabsy and sixer, hope all is going well...its interesting what you say about the mothers heart sixer...in the middle of the second c-section, (always a good time to ask a searching question) i asked the surgeon about the placenta...i imagined a dried up, wizened creature, but he said it looked fine, just small.

i remember after my first was born, asking about the possibility of the problem re-occuring, and was always told, it was very unlikely, but somehow, i seemed to think it would happen again, but yes, far less severe this time.

Would love to know how you are both getting on.

clabsyqueen Sun 24-Feb-13 22:04:06

Hi efes, nice to hear from you - ticking along ok here. 17 weeks now and have been given no cause to panic just yet. Size of baby ( another girl yay!) is normal though they won't be drawn on where in the range of normal is she and all looks healthy but it wasn't really til 20 something that problems started to show themselves so I've a few weeks if blissful ignorance. I am wildly optimistic that it won't happen again - no other option really as I would never have taken this risk if I thought we'd have a repeat. I'd take 37 weeks and 4lbs 11oz as a major success!

sixer10 Tue 26-Feb-13 16:17:19

Well, what wonderful news, Clabsy! When is your due date? Mine is 9th August, so I think I'm just behind you this time! Scan at 12 weeks was normal, but, as for you, the 20-week scan will be the million dollar milestone, as that was when Eleanor's IUGR was picked up. Are you back under the same consultant you had with Charlotte? I'm toing and froing between our specialist at Tooting and the consultant at Kingston, with no-one wanting to predict when/ where/ how delivery might take place! Professor Basky told us that the chance of recurrence is 25%, reducing to 15- 20% when aspirin is taken, and with aspirin also reducing the severity of the condition if it does recur. That seems like pretty good odds to me. It seems odd to think we might both actually be getting giant bellies and all the accompanying discomforts this time, having never had them before!

sixer10 Tue 26-Feb-13 16:20:40

Efes, I also asked the surgeon what my placenta looked like, imagining some hopelessly motheaten dishrag, but was told it looked quite normal. I think I was quite disappointed!

clabsyqueen Tue 26-Feb-13 23:02:57

Hi sixer - you are officially just behind me. My due date is August 3rd but a 37 week section would give me a July baby. Interesting that you have been given a percentage risk of recurrence. I'm a bit shocked at 20%!!! I took 'unlikely' to mean more like 5% but then like I said I had to be wildly optimistic to do this all again. I'm glad to have company on this journey again! Thanks sixer!

clabsyqueen Tue 26-Feb-13 23:03:29

Oh and my placenta was quite dishrag like I believe.

clabsyqueen Tue 26-Feb-13 23:05:08

Yes I am under the same consultant led team although I haven't seen the main man yet and we are not officially in trouble yet. I think he sticks to the high drama cases!

sixer10 Sat 02-Mar-13 23:05:30

We are very close, then! Very pleased to be sharing this journey again with you. When is your 20-week scan? Mine is 18 March. Eleanor has had chicken pox this week with various complications - the only positive from which I could draw was that at least this wasn't taking place with a newborn to attend to as well. Has Charlotte had cp yet?

clabsyqueen Sat 02-Mar-13 23:58:31

Interesting you should say as we had Sunday lunch for tmw planned and had to cancel because child of friend has CP. would be happy to let her get it but wasn't sure of the protocol about bump although I have had it. 20 week is on 19th march!!! So close!

clabsyqueen Sun 03-Mar-13 00:00:57

Must google CP. and pregnancy. Spend too much time on MN and eBay!

CelticPromise Mon 04-Mar-13 17:26:09

Hello ladies. I was on this thread quite a bit under my old name (WC). Tentatively popping back in as am pregnant again after three years of trying. Am on aspirin and high dose folic acid, and will have a detailed scan at 16 weeks. Am only eight weeks now so having all the usual worries!

I was told by consultant after DS was born that I had 20-30% chance of it happening again, but perhaps not so early or severe. Am hoping very much to be in the 70%!

Nice to see things are going well for you all.

clabsyqueen Mon 04-Mar-13 21:03:20

Welcome back (willbean) Celtic! I hope you are able to hang around here for a while yet. 3 years of trying must be exhausting - congratulations on making it to 8 weeks and fingers crossed things go well for this pregnancy. I am starting to get anxious now as we approach the 20 week mark I fear an end to my blissfully ignorant state.

CelticPromise Tue 05-Mar-13 21:02:22

Thankyou Clabsy nice to 'talk' to you again. Glad things have gone smoothly for you so far, I wish you a long and boring pregnancy.

sixer10 Fri 15-Mar-13 08:36:17

Hello again, Willbean Chariot! Great to be sharing this with you, as well as Clabsy. I hope our scans next week will provide you with grounds for optimism for your own pregnancy. My consultant gave a similar stat to yours, but also said that taking aspirin reduces the likelihood of recurrence to 15%. I'm feeling relatively optimistic at the moment - I'm certainly alot fatter than I was with Eleanor, although that may be mostly to do with the vast quantities of stodge I've been inhaling since Christmas.

clabsyqueen Mon 18-Mar-13 18:57:14

How did your scan go sixer? Hope you had good news or no news. I'm getting a bit worried about mine tmw.

sixer10 Tue 19-Mar-13 08:17:11

Scan went well. Measurements normal and no other problems detected, as yet. I'm booked to have dopplers and more growth checks at 24 weeks - 15 April. I'll be thinking of you today and have everything crossed that you will have good news / no news too.

CelticPromise Tue 19-Mar-13 14:20:19

Great news sixer. Thanks for the info about the aspirin too, I had not heard about the risk reduction, that is quite a difference.

Thinking of you today clabsy hope all is well. In fact I was at UCH today for first consultant appointment. It was fairly pointless as I haven't even had a scan yet but consultant was lovely and already knew all about me which was great.

Having a few mild cramps today and crossing fingers it's normal, got to get past 12 weeks before I can worry about the next stage...

clabsyqueen Tue 19-Mar-13 20:16:11

I wonder if we crossed paths Celtic?! Hoping your cramps are nothing. So crappy to be constantly worried - you must be nearly 10 weeks now? My scan was also normal today sixer. Phew. We are both past another post. I had been reassured until the doc reminded me that everything with C was also normal at 20 weeks. Thanks for that doc! 17th April for growth scan and dopplers. The femur length although normal looked a bit too close to the 5th centile for my liking and the PI of the umbilical arteries was sky high and off the chart but again 'normal for this stage'. I'm analysing too much no doubt. Hope to check back in 4 weeks to give and get good news from you both.

CelticPromise Wed 20-Mar-13 17:10:22

Glad all is well so far clabsy. I'm sure it's natural to over analyse when you've been through what you have!

Sadly I'm out for the time being. Had a bit of bleeding last night so I went into EPU this morning. I should be 10+4 but scan showed the baby died about nine weeks. We are completely gutted, but DH is being fab and we're looking after each other.

I wish you the best of luck with your pregnancies, will check in from time to time. Hope I am back soon.

clabsyqueen Wed 20-Mar-13 20:19:33

Oh that's really rubbish news Celtic. I hope you can keep your spirits up enough to start trying again quickly. Maybe an old wives tale but lots of people say you are more fertile after a miscarriage. I took a year to get pregnant the first time, had a miscarriage and then pregnant within 2 months. There's no rhyme or reason to these things but I'm hoping there's something in the old wives tale to keep you optimistic.

clabsyqueen Wed 20-Mar-13 20:20:01

Take care and be back soon.

CelticPromise Wed 20-Mar-13 21:12:45

Thanks clabsy. We are positive about the future along with the sadness, I am one of those relentlessly optimistic types, I can't help it. Tough few weeks to come though. Thankyou for your kind words x

sixer10 Thu 21-Mar-13 12:12:51

Celtic, what devastating news. I'm so very sorry you have to go through this; it seems so unjust. I hope the world is very kind to you over coming days and weeks; meanwhile your optimism is a great gift. The increased fertility after a miscarriage is more than an old wives' tale - a fertility expert that we saw before we conceived Eleanor said the same thing, though I can't remember how he explained it. I know of more than one mother who would testify to it, also. So I hope you will be back into battle (as it were!) as soon as you feel ready. Take care of yourself xx

CelticPromise Thu 21-Mar-13 13:30:56

Thank you sixer. That is good to hear about fertility from both of you, we do want to try again as soon as it is all over.

Hope your pregnancy continues to go smoothly.

Munkiemorgan555 Thu 11-Apr-13 17:52:33

Hi I wonder if anyone has been in my position I was sent to the Hosp because my midwife measured my belly and it was measuring 25 wks when I'm 28wk + 2 and they scanne me at the Hosp and my dopplers were raised they scanned me again 2 days later and my dopplers are still raised but the baby is measuring above average on the graph so they are pleased with the growth! Has anyone else been in this situation as normally with raised dopplers babies are measuring small the doctors have told me it doesn't make sense the puzzle doesn't fit!!!!!! This doesn't help me tho will I have to have the baby early they have said I cud have I would be lowly of someone else with raised dopplers but normal growth could let me know wht happened with their pregnancy I'm terrified I have a 6 yr old and 2 yr old and havig a prem baby is scary as they will miss out x

clabsyqueen Thu 11-Apr-13 18:23:20

So sorry but I've no experience of your situation. IME raised dopplers meant small baby, I've done a lot of googling on the subject and not come across your situation. Hope someone can help and give you some reassurance.

clabsyqueen Wed 01-May-13 19:34:13

How's things sixer? Had a scan at 26 weeks today and all looks good for baby and growth at the mo. blood flow through the uterine artery is not ideal but currently not affecting flow through the umbilical artery and baby is keeping a nice growth curve albeit on the lower centiles however she has already surpassed charlottes birthweight which is a relief I can tell you.

sixer10 Thu 16-May-13 13:39:44

Weeell, it's so far so good for me as well, though I hardly like to tempt fate by posting it. One of the arteries had a blood flow at the low end of normal at 24 weeks, but the average of the two was apparently no cause for concern. Baby estimated at just over a kilo at 27-week scan on Monday, with consultant remarking on how amazing aspirin is. I have to carry on with aspirin to 32 weeks, but won't be scanned again till 36, which will feel very strange as Eleanor was 2 weeks' old at that point. Are you still led to expect a c-section at 37 weeks, and on aspirin similarly?

clabsyqueen Fri 17-May-13 08:55:00

Hi sixer, I'm glad to hear that aspirin continues to serve you well. Congratulations! I'm 28+4 today and C was born at 28+3 so another milestone reached. Phew. Next scan is at 29ish weeks next week. Not been told to stop aspirin. Consultant said if growth and placenta keep looking ok then he prefers natural birth but there'll be no induction and I won't be allowed to go too much overdue (if at all). So chances of c-section look high to me but not a definite by any means. Other half petrified of natural birth! I don't have any faith that we'll get that far tbh but have fingers crossed for 32 weeks or more now. Stay in touch. Don't be superstitious!

efeslight Fri 17-May-13 12:04:46

Hello clabsy and sixer, glad to hear things are going well at the moment, wishing you both all the best.

LovingJo Wed 12-Jun-13 21:14:24

Hi there everyone, i am really hoping i can get some much needed support and info at this horrible stage in my pregnancy. Ive been told i have Severe IUGR due to placental malfunction. Im 24 + 5 weeks and at my 20 week scan everything seemed to be normal, but at 23 +3 weeks, baby had not grown barley at all being only 456g. Obs told me that the blood flow from the placenta was not being fed through properly. There was also only a deepest pool of an inch of fluid. A week on, nothing has changed and even less fluid. They have given me the 2 steroid injections to improve a chance if born in next few days/weeks but they dont hold out much hope?! I just dont know what to do, feel or think. My sleep is out of the window and i have so many others trying to keep me positive with stories. But i need facts with people that have been through this. Please help..... Thank You xxx

NewToAllThis11 Thu 13-Jun-13 09:37:11

Hi Jo, I'm so sorry to hear you are going through such a difficult time. I have had a similar experience so I understand some of what you are feeling. I had a growth scan at 26+6 after my bump measured slightly small which showed placental insufficiency and that my baby had severe IUGR. The doctors told me that the conditions my baby was in would only worsen and so he was better out rather than in. He was then delivered by emergency caesarean the next day at 27w weighing 655g. I had had the steroid injections a week earlier abroad because I'd had some spotting on holiday so they gave me the injections as a precaution, although I'm so glad they did now.
This was in March and my DS is now 38w and 4lbs 2. He's still in hospital because he's on oxygen which he'll probably need to come home on, but other then that he's doing well. It's an incredibly difficult and traumatic time but these tiny babies can be very resilient.
I think I was lucky in that everything happened so quickly with me so I didn't have time to think about what was happening, but I can imagine you are so worried. I really hope everything works out for you and I'll be thinking of you x

clabsyqueen Fri 14-Jun-13 00:47:20

Loving Jo, this is the right thread for finding someone who's been through the hell you're currently living in. It's been a bit quiet for a while but I'm here to hold your hand if you want it. This is a long thread and there's lots of info about IUGR hiding in it but if you have any questions then do ask and ill try to help as best I can. As a quick word of optimism I was told at 24 and 26 weeks that my baby would probably die in the next day or so. She didn't and we made it to 28 weeks - we know we were VERY lucky to get there. I'll check back soon to see how you're doing.

sixer10 Fri 14-Jun-13 10:00:48

Hi Jo, have you had a further scan now? I remember so vividly feeling just on the cusp of things turning out ok, wishing for a weight of 500g, and being unable to sleep with the worry that they wouldn't. It's so reassuring to have had the steroids though, to give your LO's breathing a massive boost if needed.

Clabsy, just been rereading this thread - remarkable to think that Charlotte was born already at this point two years' ago! What an amazing journey it was. My next scan isn't until 16th July, which seems like a very long time and in the meantime I swing from complacence to impatience to panic constantly. I'm afraid I'm probably like your OH - having had a C-section, I can no longer find much enthusiasm for a natural birth. So I'm hoping to have a provisional date set at my 34-week appointment on 1st July. How's things with you?

clabsyqueen Fri 14-Jun-13 18:13:08

Hi sixer, sounds like things are still going smoothly for you. Lovely news. Today is charlottes birthday - we popped into NNU to leave a card and I failed to hold back the tears. I wonder when i'll stop crying on her birthday? What a traumatic time, and still more people go through it every day. Next scan is this Wednesday 33 weeks and expecting to be asked to set a date for c-section too. I'm actually feeling more positive about a natural birth (naive?). I'm keeping an open mind of course.

Jadeemummykai Mon 17-Jun-13 20:59:29

Hi I have a prem baby 4 and half month old 1 month corrected I was In a car accident and had a placenta ebration and had to have an emergency c section at just 28 week gestation having a section is not bad at all the scar is really neat and usually after having one you can be mobile with in just a few days it's a bit sore, having a premi baby is hard but rewarding like mine I got to watch him grow outside the womb we was in hospital for 3 month he is home now he's on a lot of meds and a nurse has to come every week and he has a lot of doc and hosp appointment this is only because he got a life threatening infection called neck and he is a very happy little boy the nurses in nicu are brilliant and it's amazing what they do they really are angels if you would like to know anything else just ask Hun x

NewToAllThis11 Sat 10-Aug-13 12:46:10

Hi all

I found this thread really interesting and useful after my DS was born at 27 weeks due to IUGR as a result of placental insufficiency ( story above) Just wondering if there are any updates from posters who are expecting babies following placenta problems with their first? Apologies if this sounds nosey - just really found your positive stories helpful soon after DS was born and interested to hear how your subsequent pregnancies went. Hoping you all had / are having boring, straightforward pregnancies and birth.

clabsyqueen Thu 15-Aug-13 09:46:57

Hi newtoall, just logging in to update on my newbie so good timing! I'm glad this thread has been useful, it was a lifeline for me. hope your LO is doing well. I had my DD2 on Monday at 41 weeks. She wasn't the biggest overdue baby - 6lb 3oz but good enough. Pregnancy was uneventful and I took aspirin til 36 weeks and blood flow and dopplers were always good. Doc said in his experience each pregnancy is completely independent of the others. I wish I could say birth was easy snd uneventful but you can't have it all! I demanded a VBAC and am beginning to think I was crazy! Good luck if you're thinking of more babies!

Millymolliemandy Thu 15-Aug-13 22:06:16

Clabsy, congrats, was just about to pm you but saw this happy update, hooray for uneventful second pregnancies, hope you a enjoying your DD2. My second is now CRAWLING and that has taken the day to day chaos to a whole new level. New - yes my second pregnancy was absolutely textbook, and I was extremely well looked after, am now contemplating my third (and definitely final).

NewToAllThis11 Thu 15-Aug-13 22:13:50

Clabsy and milly, congratulations! That is lovely news and makes me feel way more optimistic about a second pregnancy. I only read this thread recently (when it suddenly became very relevant to me ) and was rooting for you both all the way through. I've heard some really good results from taking aspirin while pregnant after having an IUGR baby. The consultant I saw said I should take aspirin and probably be on heparin for subsequent pregnancies. Congrats and enjoy your lovely babies!

clabsyqueen Sat 17-Aug-13 22:32:33

Milly - you've gone mad! 3 kids!!! I cannot comprehend the organisational skills and patience that would take. Currently struggling to rein in my very 'helpful' first born but that's a whole other thread.

Good luck newtoall. You have EVERY reason to be optimistic.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now