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Premature birth

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Original poster

Tips/Advice on how to cope please.

365 replies

MultipleMama · 29/09/2013 13:43

I'm having a ELC on 4th October, I'll be 31+3. This pregnancy has been high risk from the start due to being twins but due to more complications; me and one baby, it's been stressful and heartbreaking. I won't go into too much detail and ramble on.

Here's the facts:
T1's has Oligohydramnios, started at 9 weeks. Always up and down.
T1's has SUA and severe IUGR diagnosed at 20 weeks.
T2 is healthy and estimated at 3lbs.
T1 is estimated at 1lb 5oz.
I had an Iron IV at 24 weeks.
Went into preterm labor on Monday. Had magnesium until Friday afternoon and steriods.
I have 4 other DC who are thankfully in school/nursery all week.

I'm struggling to deal with it all and have no idea what I should pack in my bag seeing as I won't be bringing them home. We've had a tour of the wards but it's not really helped.

What should I expect involvement wise. I want to use cloth diapers but no idea where to start for babies that small or even if they're allowed. I plan on calling the NICU but was hoping you lovelies with experience could lend me some tips and advice.

Sorry for the long post! Stuck in a hospital bed has left me nothing to do but think.

OP posts:
IComeFromALandDownUnder · 12/11/2013 22:48

Just read this thread. You have really been through the mill since your cherubs have been born. I am so happy that you have Artemis with you now. Also sending all my best wishes for Apollo. He is a true fighter. You and your husband sound amazing. X

Mama1980 · 13/11/2013 10:48

Just checking in hoping today goes well x

Original poster
MultipleMama · 13/11/2013 11:43

Just fed Artie so she should sleep for awhile. Heading to the hospital soon.

Apollo needs another transfusion but they're going to wait and see how his tests turn out first before deciding when to go ahead with it. His first result is negative!! :) so they won't be doing it today. The swelling in his stomach has reduced as they've reduced his fluids and stopped his bp meds. DH said he looked like a bruisied Pin cushion. He looked awful. Breaks my heart. Hopefully it's onwards and upwards now.

Artie is starting to act like a typical newborn, although she sleeps almost constantly. However I've noticed she sleeps like the dead. You can even pick her up and move her and she'll wake for nobody. The kids love her, K always wants to hold her, and lay with her. Also at the stage where friends want to know everything and I'm trying to ignore their stupid questions when I've told them the basics; "it's RSV season - stay away, she's healthy and happy. Apollo is still ill, please respect that." How did you deal with friends?

OP posts:
Mama1980 · 13/11/2013 11:53

Yay! Smile Well done Apollo. Great news, my ds1 who was sceptic was as ill as Apollo at first but once he started to kick the infection he bounced back remarkably quickly, hopefully it will be the same for Apollo.
Glad Artemis is doing great super star Smile
As far as friends go I think what you're doing is fine, try to keep it brief and basic, do you use social media- maybe update by private message that way? I was in hospital myself as long as my sons so no one could see either of us I do know that one of my brother s kind of took over updating everyone so maybe a family member could help with that.
X

plentyofsoap · 13/11/2013 13:24

Thats great news Smile Be firm with friends and family. Some will understand, others will not. I had a friend turn up last week who had a cough eventhough I told her not to come if there was any hint of illness. I was not impressed! I have banned under 5's too apart from her brother of course! Stay positive.

CelticPromise · 14/11/2013 20:22

How's Apollo doing? Still thinking of you all. Flowers

Mama1980 · 15/11/2013 08:13

Morning just checking in, how's Apollo doing? Thinking of you all x

Original poster
MultipleMama · 15/11/2013 09:07

Hey ladies.

Things aren't looking too good at the moment so I may not be on as much to update but I will update when I can.

They believe that the have antibiotics have/are working so he is to have the transfusion on Tuesday and his feed has been increased. However due to having his lungs attacked by Sepsis (and on top of many other things) he has developed ARDS and is undergoing agressive antibiotics and are thinking of doing a Trach - I've heard a lot of horror stories of ARDS. He looks well so it's hard to get my head around how ill he is.

DH thanks you all for all the well wishes and says hearing positive stories of preemies help.

Artie is doing amazingly, she's my star :)

OP posts:
NewToAllThis11 · 15/11/2013 10:47

Sorry to hear that Apollo has more complications, mama, although it sounds like he is making progress in other areas - having his feed increased is a good sign. Every tiny bit of weight he puts on will make him stronger and more able to fight off infections. Hang in there x

Mama1980 · 16/11/2013 07:57

Hi, how is Apollo this morning? sorry to hear bad news, but there is some positive, increasing his food is huge, he will gain strength from that. Thinking of you and willing Apollo to keep fighting. X

Supershiv1 · 16/11/2013 18:19

Multiplemama just a little hug and to say thinking of you. Xx

CelticPromise · 17/11/2013 09:11

Just checking in, still thinking of you all.

Original poster
MultipleMama · 17/11/2013 12:26

Hello, ladies.

Apollo has avoided having the trach but they're concerned about keeping him on the ventilator in case he has become dependant on it. So they're hoping to wean him as soon as and use steriods if they have to. He's no longer sedated and seems to have a little more life in him. His grade 2 is absorbing nicely and he had his 4th negative today so they plan to stop his antibiotics tomorrow and concentrate on his breathing problems. His Bradys have risen again but they expected that. His eyes are sensitive so his incubator his covered but hoping for no more problems and he can now use his strength for feeding and breathing. They say I can hold him Tuesday :) I've only held him once since he was born, so I'm very excited!

Artie is such a lovely, lazy baby, so easily entertained and settled. Hoping to hold them together on Tuesday, too :)

OP posts:
CelticPromise · 17/11/2013 20:22

How wonderful it will be to hold them together, I'm sure being close to his sister will give Apollo a boost.

My boy needed steroids to get off the vent, it was a scary time but they really helped him. I hope for the same for your brave boy.

Original poster
MultipleMama · 17/11/2013 23:30

Nurse Dean (A'lo's daily nurse) has started leaving sticky notes on his incubator. I found one when I woke up saying, "Wakey, wakey! It's time to hold me, mama! Love, Warrier." So yeah, I held my goregous boy, today. An amazing surprise as I was told I'd have to wait til Tuesday. Held both my twins on my chest and it felt right - perfect. Also Artie likes to suck on Apollo's elbow. Adorable.

They also noticed that once he settled on my chest, his heartbeat rose to 119bpm which is the highest/normal it's ever been. He's so perfect even with all his tubes that Artie tried to grab a few times!

OP posts:
plentyofsoap · 17/11/2013 23:33

That must have been an amazing experience. May it be the start of many cuddles! Smile

CelticPromise · 18/11/2013 07:15

Kangaroo care is great for him and you. May there be many more cuddles this week! I waited 30 days to hold my boy, I didn't think I even could on the vent until an experienced nurse told me. Amazing feeling.

Mama1980 · 18/11/2013 08:26

Yay way to go Apollo! Smile Amazing news you must be so happy! Its made my morning to log on and see such good news. Onwards and upwards from here on hopefully. Alex's heart rate would stabilise during kangaroo care too, it's a amazing feeling Smile
How are you all this morning? I'm not able to get online much at the moment but continue to think of you all.

Original poster
MultipleMama · 19/11/2013 17:56

Apollo had his 2nd transfusion today and it went according to plan. They hope that he will start improve at a quicker pace.

His breathing is slightly worse, they've had to increase his oxgyen so he's on the highest but it's helped raise his heart rate so it seems to be working. He also had hiccups, his eyes are still sensitive so he's kept mostly in dim light. The Doctors are amazed by him they didn't think he would survive the sepsis and are still reserved about his quality of life due to the CA's he's had, so until he shows he's ready to come off the vent, they're being realistic. Which is frustrating for us to hear.

Artie is such a trooper. I held them both again today and A'lo fell asleep against her and his heart rate stablised quicker. So at my insiatance and because I've pushed the issue, they will allow them to "room" together WHEN he comes off the vent! :)

OP posts:
Mama1980 · 19/11/2013 18:32

Well done Apollo! Smile Great news, what a little fighter.
Remember drs don't know everything, they just have to tell you the worst case stuff but babies have a huge amount of fight in them. Alex got 20% odds of any form of survival and he's now crawling before his first birthday.
Great news they will be able to room together, it will be lovely for you all and can only be good for them both.
How are you doing? X

Poppet45 · 19/11/2013 19:52

Beautiful updates Mama. As well as a prem's mum I'm an id twin and I adore my dsis so much. Dd had two transfusions during her stay. They can be risky in prems but if they go well they work wonders. Hugs to you all x x x

Original poster
MultipleMama · 19/11/2013 21:05

Just caught DH singing Small Bump by Ed Sheeran to Apollo. I'm now in floods of tears, not because it's a sad song but we nearly lost Apollo, and in turn risk Artie, when he was still in utero and I can remember DH singing this to my bump when we feared the worst. Now, we're here and fighting.

I use this as my diary to remind myself how proud I am of my beautiful babies, one who is fighting so strongly that he could give God Apollo a run for his money :)

OP posts:
Original poster
MultipleMama · 20/11/2013 14:44

Apollo came off his oscillator, today after 7 long weeks and is now on a regular vent of 78% oxygen :) so bloody proud of him. He had 2 Bradys and one arrest during the transition but he seems to be coping really well! On the downside he gas 2 chest tubes in due to his poorly right lung :( but still a positive day :)

OP posts:
laspalmas · 20/11/2013 15:33

Hi. I don't post on here very often but have been following apollos journey and keeping everything crossed for him. My little 1lb 7 24+6 weeker had an awful ride but is now 18 months actual and doing brilliantly. He was on the vent for 10 weeks, then nec three times and ended up being in for a year. He ended up with a trachy and is on a home ventilator for his left floppy lung which we hope he will grow out if in a few years.

Your journey with Apollo sounds very familiar and when you are ready or if you need a story of hope from an awful beginning, please have a look at a video we made for his first birthday. Search for Hugh hunter birthday on you tube.

He sounds like a proper little fighter with an amazing family around him. That's the most important thing in all of this x

Mama1980 · 21/11/2013 18:10

Hi how is everyone today? Well done Apollo! You must have been thrilled to get to hold them together. fingers crossed its onwards and upwards from here on it x