Day 39..

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Angela Harlem

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It's been 39 days since my son was born, and 39 fun-filled days in the NICU. He was born at 32+2 weeks and weighed 8lbs 2 oz/3,680gm. He had 5 days of CPAP, dextrose infusion which led to a calcium burn which caused him to get mrsa/golden staph. He's got a problem with his left leg, starting with hip dysplasia, shortened limb, a smaller foot than the other and 4 toes which do not grow straight or flat, and 2 of them are fused. He's got a flow murmur which will correct with time and overall seems just fine, bar a few superficial issues (ie, his bung leg). He has been battling lowered oxygen levels and slowing heart rate, which is now what is keeping him in. He's supposed to grow out of it but he's term now, and is still having them. The doctors are a bit confused as to why. He was born early due to macrosomia, polyhydramnios and pre-eclampsia (sorry little guy, I did try!). I almost went to ICU myself after the caesar due to haemorrhaging but just as they arranged a transfer, it stopped. On the 2nd day I switched from an insulin infusion IV to my insulin pump, but my rates didn't change so during night obs a nurse noticed I was unresponsive and not really breathing properly. They made a MET call and after a while I regained consciousness, thinking I was somehow in England and how did I get there? Two nurses talked to me and both had English accents and I couldn't recall where I was so when they asked if they should call my husband, I blathered on about the time difference and what time was it in Australia, please? :doh: Ah well. I bit my tongue badly during this and it's only just healed now in the last couple of days. My chest was sore as I wasn't breathing and they'd started chest compressions before establishing what was wrong and beginning the oxygen. That really freaking hurts, I gotta say. I know you can break ribs and stuff and it's very ok, but bloody hell.

So it is now day 39, he's still in, still forgetting to breath occasionally. We're just waiting for him to stop the desats and bradys. Waiting, waiting.

Thanks for reading. :)
 
Geez, I don't know what to say after reading all that either!! :ohmy: Sending good vibes to you, your little one and all your little ones... :up:
 
Thanks guys. Feels good just to write it out. The breakdowns are getting further apart, too. There's some insanely struggling bubs in that place. Full ventilation, up to day 120 and stuff. I'd not cope being one of those parents. They say we're only given what we can handle. Some people are unbelievably strong!
 
Wow. Much strength and positive vibes to you and your family. :hug: There will come a day when he'll be running around, getting into mischief, and this time will be a distant memory. Thinking of you. :hug:
 
I'm so sorry to hear all this, Angela. I hope everything works out for the best for your little guy. I'm sending prayers your way!
 
Jesus how unbelievably scary for you and your family. I cant even imagine. My thoughts and prayers are with you. :hug:
 
thanks guys. :)
tonight his nurse suggested that it might not be too long as his desats are now all feed related so it might not be too dangerous to release him, depending then on which paed assesses it. if they were occurring during sleep there would be no way to monitor them. i'd have to refuse to bring him home if it were this easy come. i'd never rest from worrying if he were still breathing. it's still not clear what exactly is causing them even. it's largely speculated to be silent reflux but his omeprozole isn't stopping them. caffeine didn't stop them, so it's not immaturity. his ecg is clear, and he's getting an echo tomorrow but i'm not too concerned. he does have terribly noisy breathing, especially while feeding, but only one doctor so far has shown any interest in that. the latest avenue they're going to explore is a sleep apnoea, but they don't occur during sleep anymore and the sleep studies are done at westmead who have not only as long waiting list but make you wait til the baby is term, which is two weeks away. westmead childrens hospital shits me in too many unique ways to even contemplate, so i'm rather tempted to tell them to get stuffed with this idea. i could not handle dealing with westmead.

as my 7 year old so wisely said to me earlier today, "you can't start today over again, mum"
:zen:
 
thanks guys. :)
westmead childrens hospital shits me in too many unique ways to even contemplate, so i'm rather tempted to tell them to get stuffed with this idea. i could not handle dealing with westmead.

as my 7 year old so wisely said to me earlier today, "you can't start today over again, mum"
:zen:

:hug: :hug: :hug: . . . westmead is beyond ordinary . . . :hug: . . . I am quite a big fan of your 7 year old :) . . . I think I need a little of his wisdom over here :)

still sending happy thoughts your way lovely :)
 
It must be hard to see your baby have to go through all that. At a time when you should be rejoicing the birth of a new life, it has to be very tough for you to go through all this stress. I hope you and your son will pull through this. All my thoughts and prayers are with your family. :hug:
 
I'm sorry. I haven't been on Zoo Confessionals forever so didn't know what was happening. My best wishes for you and your family. I admire your strength , but don't forget to take care of you too.
 
thank you so much, everyone. we finally got to bring him home on friday after 44 of the longest days ever. it's very strange being way past the whole birth itself, then bringing home what is essentially a strange baby with already established quirks and things who is almost 7 weeks old. i realise just how little we had got to know him in the hour or 2 visits we'd had each visit in the last 6.5 weeks. i feel so much for families who have 28 or less week babies. they can spend 3 or 4 months in there. their babies really are so past newborn-ness when they finally get to start being a family. it must be so difficult.

thanks so much again, you wonderful people!
:hug:
 
:hug: how gorgeous you finally get to take your beautiful little bubsta home anna . . . I'm so so happy for you and am sending you and your gorgeous family as many :hug: and rainbows and happy thoughts as I can find :) . . . stay strong beautiful lady and I will keep my fingers crossed that the ride is much much easier from here on in . . . and don't forget, you are amazing :hug:
 
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