Full/Near-term NICU support thread-- May/June 08

[eilonwy]

***Please note: This is a SUPPORT THREAD for parents of NICU babies who were born at or near term. This is not the place to post that your experience was so much worse because your baby was born much earlier, nor the place to suggest that parents of later babies should check themselves. Having a child go to NICU is traumatic, regardless of their birthweight or gestational age. If you worry that your baby didn't have "enough" problems to post in the rest of the forum, this is meant to be a safe thread for you. ***

While my most recent baby, Mr. Bear, did not go to NICU I've recently rediscovered the need for such a thread. I have two NICU graduates-- BeanBean, born at 37w3d stayed for chorionamnionitis (my water was broken for 4.5 days before he was born) and meconium aspiration. Bella was born at 36w5/6d, and went to NICU because she was having a hard time breathing, and for a few hours refused to do so without CPAP. Today they are 5.5 and 26 months old, and for the most part they're all right (though Bella is still very different from her siblings, and I still think she would have benefited from more time on the inside).

[justmama]

GREAT idea Rynna!

[lilsparrow]

Oh, thank you. I have never been able to post about my experiences her and hope this is a safe place to find support. I *really* need someone to talk to. But my baby did not stay in NICU, though he does suffer from some developmental delays. I did experience trauma at the hands of medical staff due to medical incompetance. I also experienced neglect and abuse of power by the medical staff. I don't know what is wrong with my baby, but I do know he was a planned c section that was a month early due to a CLERICAL ERROR! I had been telling my ob for months I felt my due date was wrong, and was ignored and one time he even patted me on the head. I don't think my baby was even all the way out before Dr. hollered "37 weeks!" I know for a fact my baby was NOT 37 weeks!! He looked horrible, like he wasn't done!

I wasn't able to get any answers from anyone, they are all to worried about covering their *ss. So, here I am 2 yrs. later with a baby that looks like he is 12 months, and acts the same, and I don't know why.

[mommy2maya]

Oh man, lilsparrow, that's terrible! When my ped checked out Audrey, she said she had all the classic signs of her gestational age- she was 34wks, and some of the things she mentioned were no cartilege in her ears, very non-prominent nipples, and I know there were a few others that I can't remember at the moment.

[lilsparrow]

Originally Posted by mommy2maya

Oh man, lilsparrow, that's terrible! When my ped checked out Audrey, she said she had all the classic signs of her gestational age- she was 34wks, and some of the things she mentioned were no cartilege in her ears, very non-prominent nipples, and I know there were a few others that I can't remember at the moment.

He had very prominent nipples too, and he was all wrinkled, like a little bird. Do you know where I can find the info for the signs of gestational ages? I wish I knew, because I REFUSE to accept 37 weeks. I just know it's not true.

ETA: Plus, he had a very poor latch and a weak suck, and could not keep weight on. he lost 11 oz in the hospital and we were only there for two days. They wanted to keep the baby ... hmph .... no thank you, they had done enough. it took forever to get weight on him. He wasn't diagnosed failure to thrive (thank God), but we had to fight for every oz for the first four months, and bring him in for weekly weigh in's to the lactation consultant. she was great. The only one I could trust from the hospital.

[mommy2maya]

Oh, no, she had NO nipples, like absolutely no protusion, no color differences at all. Audrey only lost 7oz in the hospital, starting at 5lb2oz and left the hospital at 4lb11oz. As of right now she is gaining an oz a day, so for us nursing is going well.

[eilonwy]

Assessment of Gestational Age; That might help. What a scary experience.

My Bella would have scored 33, which puts her right about where her calculated GA was-- 36w5/6d. BeanBean's would have been different, but it's really difficult to apply those to him because he was born after 4.5 days have being surrounded by almost no fluid.

[veganone]

Great thread! DD is a 35 weeker and we had a rough start, although only 1 night in the NICU and 1 night in the nursery for jaundice.

We have some ongoing issues that I believe are related to her gestational age - "moderate" VSD, reflux (improving now that she's sitting and on solids), tracheomalacia... She also had a horrible time figuring out how to nurse effectively and latching.

The first 10 weeks or so were impossibly hard.

ETA - Lilsparrow - that sounds really difficult - I'm so sorry.

[eilonwy]

Originally Posted by veganone

We have some ongoing issues that I believe are related to her gestational age - "moderate" VSD, reflux (improving now that she's sitting and on solids), tracheomalacia... She also had a horrible time figuring out how to nurse effectively and latching.

Bella would not latch for a time; Things got better after we clipped her tongue tie, but even so her little mouth just wasn't big enough for my gigantinormous boobs. She was also the only one of my children who would fall asleep rather than nurse, if it was too much work. I fed her with a fingerfeeder for several weeks, and then got her to nurse with a nipple shield before weaning her to the boob.

Of my four children, Bella was (so far*) the latest talker, the latest to become interested in her own independance, the latest crawler, walker, etc. She's also had the worst time recovering from illnesses which her older siblings would just blow off, and she's the only one who has asthma all the time (though BooBah wheezes when she's sick). She has *much* more sensitive skin than her siblings, and has more allergies (to food and everything else) by a *long* shot.

When she was tiny, she used to cry and then stop and freeze in awkward positions, like she'd gone into shock; It's something that premature babies do quite commonly, but I'd never heard of a baby who was nearly 37 weeks doing it. It was quite disturbing to watch. She still does it, but to a lesser extent than when she was younger.

*Bear is only three months old, but he's much more alert and interactive than Bella was at this age, and his speech & motor development seem to be developing more along the lines of BeanBean & BooBah.

[veganone]

Originally Posted by eilonwy

Bella would not latch for a time; Things got better after we clipped her tongue tie, but even so her little mouth just wasn't big enough for my gigantinormous boobs. She was also the only one of my children who would fall asleep rather than nurse, if it was too much work. I fed her with a fingerfeeder for several weeks, and then got her to nurse with a nipple shield before weaning her to the boob.]

Isabella (is that Bella's full name, or just Bella?) was on a nipple shield for probably 12 weeks and was triple fed for probably 10. It was an exhausting time - I'm not sure how we did it. I also ended up with really severe breast/nipple infections as well and was in a huge amount of pain for much of that time (finally cleared up around 4 months). I have fairly flat nipples and she would try so hard, but just couldn't latch on. She lost a lot of weight initially, which I'm sure contributed to the jaundice. My milk also came in really slowly so she got formula supplementation for a bit, which I worry now contributed to her food intollerances.

[eilonwy]

Originally Posted by veganone

Isabella (is that Bella's full name, or just Bella?)

It's her nickname/pseudonym; It's not related to her actual name at all. That said, she's called "Bella" a lot more than her actual name, as well as variations thereupon: Screamabella, Poopabella, Sleepabella, Bellatrix LeBella (like Bellatrix LeStrange, only less evil and more odd), Bellatricksy... Yeah, we pretty much go on like that. Bella herself will frequently correct people with her actual name these days, which is adorable because she doesn't have all the sounds required.

My NICU babies never had any formula at all (though I did have to pump for them-- never had to do much of that for BooBah); It's Bear, who was born full-term and healthy who ended up with the artificial milk, and the predigested milk, and who today is on Neocate because he can't tolerate anything else. :

[lilsparrow]

Originally Posted by mommy2maya

Oh, no, she had NO nipples, like absolutely no protusion, no color differences at all. Audrey only lost 7oz in the hospital, starting at 5lb2oz and left the hospital at 4lb11oz. As of right now she is gaining an oz a day, so for us nursing is going well.

Oops ... I meant to write non-prominent. They weren't invisible, but they were barely there. You could hardly see them, and they were so little.

You all are really nice women. I am glad this thread is here.

ETA: Just checked his nipples, they have grown with him , but there is still very little difference in color. Maybe that's normal?

[Peony]

I might belong here. DD2 had a wonderful beginning though, she was a HB at 38 wks, was perfectly healthy for the first couple weeks of her life. The day she turned 2 wks old, we discovered the nasty cough DH had when she was born was actually pertussis, DD2 started coughing exactly a week later, although she didn't get really ill until she was 5 wks old. Life went downhill from there. Gabrielle ended up being O2 dependent for 6 months, and now at 19m old has reactive airway disease and requires use of inhalers when ill.


I often feel like I don't belong anywhere, she wasn't a NICU baby, isn't really special needs, but isn't completely normal either. Parents with preemies often understand the precautions we take with her so I lurk here at times.

[eilonwy]

Originally Posted by Peony

I often feel like I don't belong anywhere, she wasn't a NICU baby, isn't really special needs, but isn't completely normal either. Parents with preemies often understand the precautions we take with her so I lurk here at times.

Welcome!

[lilsparrow]

Originally Posted by eilonwy

Welcome!

:

Also, when my ds was born, his fingernails looked funny. They are better now, with only two still looking funny. Did anybody elses baby have funny fingernails?

I heard that preterms caught up by two, but my 2 yr old still looks and acts like he is 12 months old. He still eats baby food, and he just still looks like a little baby, even though he is fat now. He doesn't say anything other than, ugh, he didn't even sit up until he was 14 mo (tonal issues). Will he get better? Will he eventually catch up, or is it a maybe, maybe not thing?

[eilonwy]

Lilsparrow-- would you mind posting a bit more about your son's birth & development? After two years, I'd be concerned about something else going on; As you said, most premature infants (all but the very youngest) are developing more normally by age two.

That said, while my Bella is fairly average for two, she's so different from her siblings that it doesn't quite *feel* average to me. She is, however, making progress.. and I suppose that's the most important thing.

[Peony]

Originally Posted by eilonwy

That said, while my Bella is fairly average for two, she's so different from her siblings that it doesn't quite *feel* average to me. She is, however, making progress.. and I suppose that's the most important thing.

Gabrielle has turned out to be average in most things, sitting up, rolling over, all those things were behind for a while due to poor muscle tone in her chest but then she just caught up all of a sudden physically. She is 19m but not that verbal yet, only a few words.


What we struggle with the most is illness, Gabrielle gets sick so much. Last summer she went 2 months without getting a bug and that was the longest period without being ill. Since Thanksgiving, we have only had a week or two here or there without her fighting something.

[Liba613]

I am not sure if we belong here or not. My kids were a bit early but not terribly so, but at least my youngest has other issues which complicated his arrival and made him act a lot earlier.

DD1 was born at 34w5d at 4lbs 1oz and came home day three at 3lbs 11oz. She has scarring on her brain MRI that is likely from her prematurity. She had trouble keeping her body temperature for a while and her suck was terrible. I didn't have to release her latch until she was six months old. She had bronchiolitis many times during her first years, asthma and breathing problems. She was on inhalations until she was 7. She is 10 years old now with some issues, but not necessarily related to her prematurity.

My DS was born at 36w4d at 5lbs even. He was intubated and ventilated for a week and in the NICU for almost a month with problems with his sugars, bradycardia, apnea, oxygen saturations, feeding, and body temperature. He is still not verbal, tube fed, and on oxygen while sleeping, though he is walking and mischief! He will be two July 2nd. At this point it is thought that he has a mitchondrial disorder which may explain his extreme reaction to his mild prematurity.

It is nice to meet you all!

[eilonwy]

Shalom!

[Liba613]

Originally Posted by eilonwy

Shalom!

Nice to see you!