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Connect with others and find premature birth support.

Premature birth

Born at 25+1 weeks when did your baby get home?

30 replies

Tash13 · 13/02/2014 18:41

Hello, the last 3 months of my life have been hell. I was pregnant with twins at 23 weeks I got twin to twin transfusion so had to go to Birmingham for laser surgery. Everything went well until I went into labour a week after. I had two beautiful boys, jake and kian identical both weighing 620g. Unfortunately jake only lived for 13 hours. I then got septicaemia and was in hospital on a drip for two weeks. Kian is now 10 weeks old he's had a bleed in the brain, sepsis, PDA, Reflux and now isn't tolerating feeds well as well as the beginning of ROP. He is now 3lb 2oz and every time I think I can't see the light at the end of the tunnel something else comes at us. He's off oxygen now which is good but still has a lot of desats and Bradys. Please tell me how long your wee ones stayed in hospital for? I just want him home :(

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KippyVonKipperson · 13/02/2014 18:44

Sorry you are going through this, no knowledge myself but couldn't leave your post unanswered. Hope he gets home soon

Tash13 · 13/02/2014 18:47

Thank u kippy xx

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FraggleRock77 · 13/02/2014 19:28

Hey Tash. Sorry to hear you're going through such a difficult time. Well done on getting this far. It does seem like an endless battle at times. My 29 wker went home after 7 Wks in NICU. Although we had a really simple journey. It does get easier. I'm sure other people will post soon. Have you spoke to BLISS or looked at the website? This is a great section to get help, lots of knowledge. Good luck on your journey xx

EzrasMummy · 13/02/2014 19:42

Hi

Im so sorry for your loss. it must be very hard. My Son was born at 25+5, he had sepsis, bleed on he brain chronic lung disease, a PDA which was corrected by surgery at 3 weeks and NEC. he is now 13 years old and doing very well. He was in hospital for 4 months and a couple of weeks.

Just try and hang in there and take one day at a time. Baby steps. Its well worth getting the Tommys charity book too, and contacting them along with BLISS. It does get easier and those little milestones are even more special x

AWhistlingWoman · 13/02/2014 21:45

Hello Tash13

Congratulations on the birth of your twins. I am so very sorry that your dear Jake passed away and that you have been so poorly as well. It does often feel as though it is two steps forward and one step back with a baby in NICU.

I had my twins back in 2008, born at 23+4. Sadly one of my little girls died at three days old. Her sister came home after 128 days in NICU/SCBU around two weeks after her due date. She also went through all the issues that Kian is dealing with at the present time, brain bleeds, sepsis, ROP, PDA. He is doing SO well to be off oxygen. DD2 had barely made it on to CPAP by his age and never did manage to kick the habit - she ended up coming home on oxygen. She's a happy, healthy five year old now. Hard to believe that she was ever such a tiny wee baby.

Will be thinking of you, Kian and Jake. I hope that Kian will be home with you as soon as possible and I'm so deeply sorry that Jake couldn't stay.

As Ezra'sMummy says do hop on over to the Bliss boards, you can find support there and, if you ever feel that you want to talk about Jake, SANDS has support boards and TAMBA have a facebook group specifically for the loss of a twin or twin babies. If you are interested in joining please let me know and I can forward you the details.

Take care, I know it feels absolutely endless right now but it will get better.

honeybeeridiculous · 16/02/2014 21:26

I would say on average 25 weekers stay in hospital for 100 days, some abit more, some abit less, but he's doing so well to be off oxygen, such a lot of these babies go home on oxygen
All those problems your little one has are very common but extremely worrying for you, just take each day as it comes, relish the little bits of progress he makes. I wish you lots of luck

Supershiv1 · 19/02/2014 07:24

Hi Tash
my 25 weeker was in hospital for 213 days but his big problem was kicking the oxygen, the fact that kian is off oxygen already is amazing.
The journey to getting him home can seem like forever but you will get there. Don't let our 213 day journey terrify you - that seems to be exceptional.
Hugs xx

SarahPatricia · 19/02/2014 13:14

Hello
I work with prem babies. I'm a qualified nursery nurse and have also worked as s maternity nurse.
I'm so sorry for your loss . Normally Prems will stay in hospital until they reach their due date, some stay longer. its hard to have them kept in hospital but if they allow him home the risks of illness (catching colds etc) are high and they'll want him really strong before they risk that. Also be prepared to limit visitors when he is home as they will introduce germs to him. Also going to visit other people is out of the question (germs again). Even going into shops is not advised. Walks out side will also be out of the question until its much warmer.
If you have any questions just ask or private message me. If I can't answer then my paramedic boyfriend or doctor friend will help me help you x

Tash13 · 20/02/2014 22:30

Thank you all for your replies it means a lot. This week has been the worst week yet. On Tuesday we had to watch as they did CPR on him for 15 mins I thought we'd lost him. After that he went back onto oxygen and so the hell continues. Home is getting further and further away I'm just so glad he's still here xx

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FraggleRock77 · 21/02/2014 07:09

Oh poor you. How utterly terrifying. I can't even begin to imagine. Keep posting so we can support you. Thinking of you xxx

SarahPatricia · 21/02/2014 18:32

My thoughts and hopes are with you xxx

KippyVonKipperson · 21/02/2014 19:05

hoping things get better

FraggleRock77 · 21/02/2014 20:36

How are you doing Tash? X

Tash13 · 21/02/2014 23:16

Hi all, I'm doing ok thank u! Kian got another blood transfusion today so we're hoping that will help a bit. He took a bottle yesterday too for the first time only 5mls then another 20mls at night time so that's positive. I went in today and the cannula for his transfusion was in his head it's so horrible to see that :( fingers and toes crossed tomorrow is a good day xx

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SarahPatricia · 21/02/2014 23:35

Valdeeves · 23/02/2014 13:49

How's he doing today?

Tash13 · 23/02/2014 21:17

Hey he's a lot better today -touch wood- the blood seems to be doing the trick. A few Brady's and desats but nothing like normal. Hopefully tomorrow is the same. Thank u all so much for your comments xx

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JokersGiggle · 02/03/2014 00:15

How are things going? thinking of you x

preemieparent56 · 02/03/2014 01:58

Tash13, it is known as the emotional rollercoaster, and it is never easy to deal with.
Your loss of Jake will make things harder for you later when it catches up with you emotionally.
As to going home, it will depend on the weight, and health, rather than a fixed period, but 100+ days should be expected.
Use the days before Kian come home to get as much rest as possible.

When the time DOES come, it can be equally stressful as you spend your first nights at home without the safety net of the on call professionals.
You really need support at that time. Another preemie parent is good, or close family on hand to reassure you.

My son was a 24 weeker, bleed on the brain at 3 weeks, PDA at 10 weeks, and came home after 106 days. He is now a student at college, studying to be a chef, and is 6 feet tall... how proud am I? I thank the doctors and nurses who helped him through it, and worry over the children he shared his time in hospital even now.

Wishing you all the best, and all your family who will be as much on edge, even if you haven't noticed yet!

Tash13 · 11/03/2014 21:55

Thank you all for your kind messages! The latest is... Two weeks ago his tummy started to swell up he was diagnosed with NEC he was very very sick they had to transport him to a different hospital an hour away for intensive care and was started on triple antibiotics straight away and ventilated (oscillator) we were told the next 48 hours were critical. A week went by surgeons were checking on him everyday and last Friday they decided they had to operate. They were shocked at what they found his smaller bowel was in extremely bad shape. They cut out 20cm of diseased bowel and had to take out two temporary stomas! The head surgeon said he was utterly amazed that Kian was not sicker. How could he have been sicker?? One doc said he was knocking at St. Peter's gate and came back. My feeling is that it was the thickener that they put in his milk to help the reflux did the damage - his bowel wasn't mature enough and the thickener thickened inside the bowel and caused damage. It has now been 4 days since his operation his belly has gone down a good bit and they extubated him today - he has been without any oxygen aids since 2pm and so far so good so fingers crossed!!
He'll go back onto feeds gradually from Friday. Only problem now is he has stage two ROP in both eyes which will be checked again tomorrow please god be ok xx

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FraggleRock77 · 11/03/2014 23:18

Oh Tash. I'm going to think about you and wish your LO well. Sending a huge hug x

nagapie1 · 11/03/2014 23:46

Sorry to hear that, Tash. The same thing happened to my son, he got NEC, also after thickener was added to his milk (it's hard to not feel like it was the cause but why are doctors prescribing it then!).

When he got NEC, it felt like the worst thing ever. First we thought he was going to die, then we thought he might be saved but have to live on TPN for ages and then we didn't know how we would manage the stoma.

Well we are now a month down the line and just home from hospital. The stoma is a pain but it's totally manageable. I even supported the surgeons in deciding not to reconnect him yet (the paeds wanted to) as he is only just recovering from so much. Things will get better.

My son had stage 1 ROP and his vision was delayed. It's only now at 4 months, 2 corrected, that he is really starting to use his sight in a meaningful way. There are so many scares along the way when you have a prem, especially a poorly one.

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Tash13 · 12/03/2014 22:23

Thanks FraggleRock! :) and Nagapie I'm sorry you've been through the same thing, it's a comfort to know that your wee one is home and you are coping well with the stoma. Please let me know how everything goes! Kian is still off all oxygen so far so good. His belly is still quite swollen which worries us a bit but the ROP is still the same as last week which we're happy with at the minute as we didn't want him ventilated again to go through laser surgery this week - it would be way too much for the poor wee man.

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nagapie1 · 12/03/2014 22:52

Tash, after the surgery my son was back on antibiotics and it took 13 days for his stomach to go down and for him to stop being generally swollen. I was begging the surgeons to go back in as I thought they'd left a bit of infected bowel behind. A very wise consultant sat me down and told me that I needed to give it 15 days from the surgery and if it was her child, there's no way the surgeons would be touching him yet. I listened and she was right.

Tash13 · 16/03/2014 18:10

I'm so glad you said that it's now 9 days since his op and it's only beginning to go down now. The docs were actually saying he might have needed another op during the week because it's a bit red around his belly button and because the belly hadn't gone down they felt there might be something else but the consultant surgeons have all said no to leave it unless he gets very unwell very quickly but so far he's fine in every respect except his belly. Fingers crossed!

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