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Discussion in 'Second Trimester' started by Grace24, Dec 4, 2007.
Thank you so much for your message. It really does help hearing from other people who have been through it as i dont think anyone else could begin to understand, even the others mums with babies in NICU as almost all of them were born significantly later than 24 weeks so my baby is the sickest by quite a way.
I went in to spontaneous labour with basically no pain so i went into hospital after a bleed when they discovered i was fully dilated. I got one course of steroids but only a couple of hours before he was born. he was intubated immediately and i have no idea what is apgar score was, even if they said i was way too hysterical and in shock to take it in.
He did really well at first and self extubated at 1 day old and went onto CPAP. Then on day 4 he really deteriorated fast and they put him back on the ventilator and found he had a perforation in his small intestine so he went straight to surgery and had 5 cm of bowel removed and a stoma formed. I also remember the feeling you described of saying goodbye to him before the operation being very sure that i would never see him alive again. It was like he came back fro the dead when they said he survived the surgery.
He had a very slow recovery from the surgery needing lots of inotropic support for his blood pressure and high doses of morphine but he slowly came off everything and 5 days later went back onto CPAP. He managed that well for 6 days then he started to tire havings lots of apneas and desats (he also has a PDA so desaturates loads) so they put him back on the ventilator. He then destabilsed really fast and now has sepsis, yesterday he looked so awful he didnt move the whole day and is usually active he also didnt wee so they had to catheterise him and start him on inotropes again. I now feel as if things are much worse than when he was born as atleast then he moved and could control his blood pressure.
I am also young- 23 but am a student nurse and have worked in intensive care so luckily i do understand whats going on and ensure that the doctors speak to me as an equal but it is hard when you are having a bad day and cant stop bursting into tears. I also hate seeing the other mothers holding their babies as i have never held jeremy or kissed him or smelt him. I also have the feelings of guilt you mentioned as he would have been perfectly healthy and was growing well if only i could have carried him till full term. I am also very fearful of the future if he does survive as i have no idea how healthy he will be and what his problems will be. I just hope he will be able to think. How is your daughter now and did things get any easier?
Sorry for the long message i obviously had to get a lot off my chest!
Thank you again for sharing your story with me
hiya jen, ive changed my username back to what it was before so thats why its different, its still me though!
i didnt say congratulations before so congratulations mummy, on the birth of your beautiful baby boy
im only 23 too so i can relate to you on that, i always felt that people would look at me and think im just another young mum who has no idea but i surprised everyone by becoming a prem expert! i really cared about what people thought at first but i soon stopped that cos it made everything 10 times worse.
my story is so similar to yours, spontaneous labour, shock at finding out i was delivering (i had a very abruptmidwife, i thought Ami was dead for 2 minutes after she was born, nobody told me she was alive, i had to wait for her leg to move as they were intubating her in the delivery room)
Ami also had a PDA which reared its ugly head for weeks but eventually closed with medication, if it persists for too long or causes serious problems they can do keyhole surgery but they would rether wait for baby to sort it out themselves. she had the blood pressure issues, really scary i must say, everyday id walk out with no dopamine in the pump and the next morning it was back. they had to paralyse Ami with panc to stop her fighting the ventilator, that was harsh, she used to try and open her eyes but she couldnt. are Jeremy's eyes open yet?
Ami had several periods of sepsis but antibiotics got her through it relatively unscathed,its like a kick in the stomach when things seem to be going well and then they get ANOTHER infection. but its common and you have to trust in the doctors and the little baby who will fight his best fight.
seeing other mums cuddling with their better babies was torture, its so painful, i dont know if you can even describe it. i began resenting them and their babies, that sounds SO bad but it was because i felt so terribly guilty and sad. i hated everyone during those dark days but i managed to pull myself together and be strong, the last thing Ami needed was a jibbering wreck of a mother. i had to pull myself out of PND, keep an eye on the symptoms because it creeps up, make sure you talk talk talk to people, nurses are especially good, as you will know neo-nate nurses are trained in how to talk to us parents, they do the psychology with their degree. they see it all the time and get attatched too, if you feel shit dont keep it to yourself, tell me if you want!
you need to stop worrying about the future, you will drive yourself insane. one day at a time, i know its hard but its all you can do because you will scare yourself to death. i lost 2 stone (i was slim to begin with) through worrying, im still trying to put some back on. it uses so much energy, you need all you can get. i dont know about you but i stopped eating and started smoking afetr 2 years of having quit. that was a mistake! anything to get you through though. the nurses always used to ask if i was getting out with my friends and stuff but to be honest, i felt bad if i did anything apart from go to the hospital. its so difficult trying to continue with normal things, its like time stands still.
to say Jeremy (am i spelling his name right?) was on cpap so soon and for so long is brilliant, his lungs cant be as bad as Ami's were and are. im a lot more settled knowing that hes been off the ventilator, im optomistic for you.
Ami is doing well now, she is 6 months old (2 months corrected) and is 11lb 6oz. she is on long term oxygen and gastrostomy feeding (continuously) so she feeds through a tube directly into her tummy (long term cpap use and bradycardia and desats meant she could never bottle feed or breast feed) but shes gaining weight so its all good. its a bit of a nightmare moving her from the living room to bed cos of all the tubes and the feed pump but we dont mind. she has a saturation alarm for when shes asleep cos thats when she decides that she doesnt want to breathe. her head is a little flat at either side cos of the long term hospital stay but we have repositioning techniques from the physios to try. she looks like a typical prem, very cute, very small, big eyes and beautiful. i can grab her shes so chunky, when i held her for the first time in NICU she was teenie and i was scared but its great now, shes a handful!
when a prem goes home they have soooo much support so any future problems will be picked up as and when they occur. 33% of extreme prems grow up unscathed with no long term problems, even if they do have problems they are usually very mild e.g. ADHD or socialising problems, they may just be slow to catch up but as i said, a lot of them are absolutely fine.
t the moment Ami is favouring one side of her body and im freaking out about cerebral palsy, i shouldnt but you just cant help it sometimes.
please try not to worry about the future, i still stop myself because theres no way of telling until she grows and begins to develop. whatever happens you will deal with it and the specialists that follow Jeremy's progress will ensure that all is done to make sure he grows into a 'normal' little boy.
you have a brilliant advantage being a student nurse but if you ever need to talk i will be happy to listen and give advice if you want it. things will get better, when you can cuddle him and you get more involved with his cares. i wont pretend its easy cos its the hardest thing i have ever had to do in my life and ive had a lot thrown at me in the past. its the best and worst experience of my life, im not gonna pretend i know it all but i certainly know a lot more than i did this time last year! keep your chin up, look after yourself. like i said before, be realistic but optomistic. i hope your little boy gets better soon and gets himself back on the cpap, its such a big step to get off the ventilator.
when was he due? thats when they aim to get them right for, Ami was an exception to the rule! i think she enjoyed the attention of the nurses! dont be scared by my story, every baby is different, its impossible to compare.
soz for the essay but once i get going on this.......
keep strong mummy
Thanks for your reply it really does help to hear from people in similar situations. Well we have had a really tough last few days. On friday night at 2 in the morning we were woken to be told that jeremy had had a pulmonary haemmorage and that he was very critical they even asked if we wanted a priest to come and christen him. He looked in so much pain i told them to stop torturing him and suggested it was kinder to turn off the ventilator.
Somehow though he slowly stablised and has had a really good day today, i even got to hold him so we had our first family picture which was amazing! they are also talking about trying him on CPAP in the next few days which is so good considering the past week has been so bad. I am so proud of my little fighter!
But do find it very hard to actually be happy as I know that anything could happen at any time!
Jeremy has opened his eyes, he was about a week and a half old and did it when i was changing his nappy and his daddy was there too with the camera so we captured the moment! He was due on the 6th March and everyone has told us to aim for then, saying that i know alot of babies take alot longer and one poor baby in the unit sadly passed away this week after 4 months, was truely heart breaking.
hoping for a quieter week
Jen and Grace,
My heart goes out to you both - I am thinking of both your little fighters. Your posts were amazing - please keep us updated on how Ami-Grace and Jeremy are doing, when you get time.
Lots of love
valentine - thanks very much for your thoughts and thanks for finding time to read these essays! you cant write a short post about a preemie. thanks again
jen23 - you poor thing having to go through that and that poor little baby. what a nightmare. it was better timing than if it had been at the beginning though, hopefully there will be no long term effects from it. he is a little fighter, more resillient than he looks i bet. really glad you got your first cuddle! how much does he weigh? did they let you cuddle him while hes intubated? we had to wait until Ami was on cpap.
it is very difficult to get your hopes up, i used to do it all the time and everytime id get booted back down to earth with a thud. i stopped getting excited in the end, self preservation i think, even when they told me she was coming home i didnt get excited cos i didnt believe them. i was waiting for the boot. they must have thought i didnt care but i cared more than anything, i just didnt dare het my hopes up because any more disappointment would have pushed me over the edge.
can i ask how your OH is taking all this? apparently men deal with it completely differently but i think my OH used this as an excuse. i was there all the time, i had to beg him to come some days. i wish he had been there with the camera when Ami opened her eyes. im glad you have the support of him because not having it is terrible. you will be ok with someone to lean on.
i hope today has also been a good day, i hope jeremy is holding his own and being a good boy so as not to scare his mummy anymore!
Jen - I still pop in and keep reading (I think lots of folk here do). I just don't have much to say.
Grace, I'm glad Jen can hear from you and I'm glad things seem to have gone so well with Ami, she sounds like such a little toughie!
Fingers crossed for you both, especially little Jeremy 'cos he's having such battles right now and giving such a good account of himself.
I just wanted to say that it melts my heart when I read both your posts and I have been following Ami's progress since she was first born. my heart goes out to you both I can't begin to imagine how hard it must be for you and I think your so so brave.
Neither of you are alone, if you ever need anyone to talk to then take your pick because we are all here for you, we may not know how you are feeling or what your going through but we will still be here to listen and it's good that you have each other to talk to as your both going through the same thing
I am always thinking of little Ami and Jeremy and I hope they both continue to make progress X
Thank you everyone for your kind words. it is nice to know people are thinking of us as it can be very lonely and isolating living at a hospital!
Things have got a a bit better since my last post- he is off the ventilator! for now anyway! He pulled his own tube out last night so they thought they would give him a chance. So far he is doing ok obviously a fare few desats and bradys but i get used to that. They are starting him on more indomethicin to treat his duct so fingers crossed it works this time.
Also the nurse says I can cuddle him again today- skin on skin! they are going to put him down my top- i am so excited!
He weighs 760g at the moment- hasnt really put on any weight since birth as he has been constantly unwell and never managed to feed for longer than a day. but now the dopamine is off (again!) we will hopefully try some feeds in the next few days.
My other half has definitely coped differently from me- i have to sit with him basically all the time- i am starting to come home for a bit though as him and I still live at the hospital and we are trying to build up to going back home. Whereas he does sit with him but also likes to keep very busy and spends more time at home. He is going to have a cuddle this afternoon aswell though and he cant wait!
Hows Ami doing at home? Is it very nerve wracking not having the doctors and nurses around?
Anyway, fingers crosses for a good week- i think i deserve one!
Too right you deserve a good week Jen! I'm pleased that he is doing better. My fingers are so tightly crossed for you all. xxxx
see what i mean jen about all these ladies on here, everyone is so nice and supportive. it really made me feel better when Ami was in hospital and it still makes me feel better now.
wow! little jeremy is off the ventilator! i hope everything is still as good while im writing this, i know how things can change in a heartbeat. on 2 occasions in NICU i went out to make a phonecall and when i came back in there were doctors and nurses all over her, machines going mad, id have to leave again because it distressed me so much and ring everyone back to tell them to forget what i just said and this was happening now.
760g is teenie, bless his cottons. Ami never went below 760g, i didnt get skin on skin til she was about 3lbs and i thougt that felt small, i cant imagine what its like kangarooing such a small baby. i hope you got to do it and i bet it was wonderful! it makes preemies better, they can feel mummys heartbeat and smell mummys smell. read this:
http://www.dailymail.co.uk/pages/live/a ... ge_id=1770
she was on GMTV this morning, that little girl looks just like Ami! only a little bigger. all preemies look the same until they get a little older, they are so cute.
i really hope the PDA sorts itself out, hes onto a good week if the medicine works, i hope with all my heart that he is on the way up and nothing else stands in his way of getting home! you must look after yourself though, i dont know how youre feeling but i was in shock for a month, i was on adrenaline i think. somehow i was getting up early, being cheerful, doing the housework, getting myself ready, going to the hospital for 10-12 hours then sleeping for a few hours. then i crashed, i had to slow down otherwise i would have run myself into the ground. its like a marathon.
youre doing really well, from your posts you sound well, i really hope you are ok, i think about you and your family and your little miracle all the time. i believe jeremy will be fine, im praying for him. ( i wasnt religious until i had Ami, i have a little more faith now! ) keep your chin up, today sounds like a good day, im sure he will have many many more.
Ami is doing great at home. i tried to increase her feeds but she kept being sick so shes back on 37ml an hour. i can remember when she was on 0.5ml in the beginning an they would increase it to 5ml over the course of a week and then she would get ill and they would have to stop it and start all over again. so frustrating, i hope jeremy excels and amazes us all! She's asleep at the moment, she gets exhausted very easily cos of her lung problems, it takes a lot for her just to breathe, she gets mad that she cant stay awake. its a shame cos she loves playing and i love playing with her but she only seems to stay awake for an hour at a time before shes exhausted again. she is wonderful though, im trying to get her to laugh but shes only just learned to smile a little! her cry is a bit weird too cos of her lungs and vocal chords (damaged due to tube ventiation) hopefully this will all sort itself out as she grows. the physio is coming tomorrow, theres someone here almost everyday to check her or check me, were well looked after which is reassuring, nobody interferes though, i think they know that i had such a tough time during the hospital period that i want to do everything now and i do it properly, shes well looked after so things dont need double checking.
not having nurses and doctors is actually more great than worrying! i have a saturation monitor but she holds her own when shes awake so i dont use it during the day. i know what to look for, im all trained up so im confident that i would know what to do whatever happened. i love having her all to myself.
cant wait to hear how jeremys doing but no rush, i will keep my fingers crossed.
TO EVERYONE ELSE: THANKYOU FOR YOUR KIND WORDS AND GOOD WISHES, IT REALLY CHEERS MY DAY UP TO KNOW PEOPLE ARE STILL THINKING OF AMI-GRACE. CANT WAIT TO TELL HER WHEN SHES OLDER ABOUT ALL THE SUPPORT. YOU GUYS ARE ALL STARS.XXXX
Just thought id let you all know jeremy is still holding his own off the ventilator although they did have to give him a massive caffeine dose last night as he sometimes forgets to breathe and caffeine can help them remember! Today was his first day wearing clothes- he looks so cute!
Anyway i am about to write an essay for my uni work now- very good distraction!
Ace news Jen!!
I take my hat off to you writing essays through all this, you're going to be such an uber cool mum! (I guess we can see where Jeremy gets his spark from!).
well done jeremy!
first clothes day! oh how sweet! i remember that fondly.......it was a dolls dress! wish i could have kept it but it was the hospitals.
brilliant mummy, clothes are a great sign. you must be a happy bunny today.
good luck with the essay.x