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Preemies
A boatload of questions
I feel so overwhelmed with questions right now, but am restraining myself from googling anything because I know I'll find the worst case scenarios & sit and worry 
Medical Questions:
1. Does anyone have experience with IVH's? Lottie's was level 3, then level 2 yesterday, and they are checking again tomorrow. They told DH that it looks like it will go down, but I still worry what the effects are going to be.
2. Do PDA's usually fix themselves? Libby has this. Is there surgery or do you just live with it?
3. Of course it is taken case by case...but if your child was on a ventilator, how long was she/he on it?
NICU Questions:
1. Babies born 28 weeks--how long were they in the NICU?
2. What did you bring from home to put by/in their incubator. Is there things that you shouldn't bring?
3. Does anyone else worry about the nurses being sick but not knowing it, and then being around your babies?
That's all for now...more to come later I'm sure.
Thank you in advance for any questions you answer!!!
This discussion has been closed.
Re: A boatload of questions
First, ((HUG)) Overwhelmed was my word of the week when Robbie was born. I swear, it gets better. It still sucks, but you at least start to learn things and feel less overwhelmed by stuff you don't understand.
1) No experience with IVH, personally.
2) I don't know what the percentage is that fix/don't fix. Robbie was a 26weeker whose closed after 1 round (3 doses) of ibuprofen.
3) Robbie was on the vent for 5w. He came off his first day, for about 14 hours. Then a week or so later off for about 36 hours. Then another week or so later, 27 hours, and the 4th try was permanent. He did spend another 3 weeks on CPAP after that. Then several weeks on high flow canula, then low flow and ultimately came completely off oxygen the week before discharge.
NICU questions:
1) N/A. Mine was a 26 weeker, he came home on his due date.
2) We brought receiving blankets to cover his pad and to swaddle him in. We also had a small stuffed prayer bear and a little elephant. Other people had pictures of mom, dad & siblings. Don't bring anything you'd be heartbroken if it went missing. We did lose a blanket or two along the way, I think they got thrown in w/hospital laundry. You can also leave a disposable camera so the nurses can take pictures, too.
Be sure to take some pictures with something common. A matchbox car or something. Those are good to show size comparisons.
3) Pretty sure I worried about everything, yes. That being said, they are usually VERY careful about that, and that is why they have very strict handwashing rules. Even if they had something, as long as they're not spreading their germs, it should be okay.
My Blog
Thank you for answering for my questions!! Your answers really re-assured me (PDA, ventilator) & made me realize that duh! there are others out there who are going through the same thing and can help
1. Does anyone have experience with IVH's? No experience here.
2. Do PDA's usually fix themselves? Angelina's PDA also went away after a round of meds
3. Of course it is taken case by case...but if your child was on a ventilator, how long was she/he on it? Angelina was on the vent a little longer than most. She spent 6 weeks on the vent, 1 week on CPAP, and 6-7 on the nasal canual. Suprisingly she has no residual breathing issues and didn't need to come home on any oxygen. Her main problem was desats, where she had trouble maintaining her blood oxygen saturation percentages without the help of oxygen. She also needed a round of steriods to help wean her off the vent.
NICU Questions:
1. Babies born 28 weeks--how long were they in the NICU?
We were told to expect her home anywhere from 2 weeks before her due date to 2 weeks after her due date. She spent 16 weeks in the NICU and came home 2 weeks after her due date.
2. What did you bring from home to put by/in their incubator. Is there things that you shouldn't bring?
Every hospital has different rules. We were allowed to bring blankets to swaddle her in and to decorate her isolete with. We also decorated it with prayer cards and a name card my sister made. One thing that wasn't allowed while she was in the isolete was stuffed animals. I can't really remember the reasoning behind it, but I think it had something to do with how humid they had to keep the air. I would ask your nurses for suggestions.
3. Does anyone else worry about the nurses being sick but not knowing it, and then being around your babies?
This never even crossed my mind. I think the nurses are pretty cautious and they actually are so careful at first that it is amazing. If you think someone needs to wash their hands dont be afraid to ask them, they will most likely understand and if they don't, tough! Angelina did get a bacterial pneumonia, but it was attributed to her ventilator. Besides that, she just had her first cold at 14 months old.
The PP is right ... it does become less overwhelming with time.
((HUGS)) At times, I'm still overwhelmed, and I am going on 5 weeks now. Take it day by day if you can, and I second (third, fourth, etc) the rec for the Preemies book.
Medical Questions:
2. Do PDA's usually fix themselves? Libby has this. Is there surgery or do you just live with it?
LO had a PDA when she was discharged. They watched it while she was in the NICU and then afterwards. It was getting smaller so they never worried about it and at about 6 months actual it closed on its own.
3. Of course it is taken case by case...but if your child was on a ventilator, how long was she/he on it?
She was on a vent for 8 hours, CPAP for 6 and then the nasal canula after that. I pPROM'ed at 25 weeks and she was born at 27, so she had almost 2 weeks to have the steroid shot to work. I think that made a huge difference.
NICU Questions:
1. Babies born 28 weeks--how long were they in the NICU?
She was born at 29 according to the OB, but the NICU adjusted her back to 27.. so she's sort of a 28 weeker? Anyways, she was in for 62 days.
2. What did you bring from home to put by/in their incubator. Is there things that you shouldn't bring?
We brought blankets and clothes once she got bigger and was in a crib.
3. Does anyone else worry about the nurses being sick but not knowing it, and then being around your babies?
I didn't really, they are pretty aware of the consequences. There was a baby next to us that was sick. The mom had the flu and ended up dying of H1N1, so when the baby got sick, they kind of freaked out.
Congratulations on your babies.. I don't have alot of help for your first few questions.
Our boys were born at 30 weeks and Nathan was on the ventilator for 4 days. Joey only needed CPAP.
Our 30 weekers were there for 5 and 6 weeks. They came home at 35 and 36 weeks gestation.
We actually didn't bring in much for their incubators. I feel kind of guilty now. We did bring them clothes to wear once that was allowed, but we used the hospital swaddling/receiving blankets. And each boy had a handmade quilt from volunteers that were really nice.
I never really thought about the nurse thing. I figure they know the babies they work with... I have to trust that they will take care of themselves and not work if they are not feeling well.
Hi and big hugs to you-- what you're going through is so very stressful and scary right now but you will get through it, I promise.
1) Our daughter had IVH, grade 2. Luckily for us, it went down, got better and she's fine now. What our doctor told us was that if it doesn't cause problems in the NICU (turn into hydrocephalus, etc.) then it's fine. It's not really the IVH that causes issues-- it's what the IVH can lead to. If it's getting better, that's great news.
2) Yes, PDAs do ofter fix themselves. Or the babies get medication to fix it. However, if your babies have had brain bleeds, they can't take the medication and then might have to have surgery to close the PDA. My daughter did have a PDA and did have the surgery. It went fine-- I think it was more traumatizing for me and my husband then it was for her, she recovered quickly and has had no more issues.
3) My daughter was on a ventilator-- right after she was born (for two days) and then again after her PDA surgery (1 day)
4) Annie was born at 26 weeks and was in the NICU for 11 weeks. Luckily, we were able to take her home before her due date.
5) We had some stuffed animals in her incubator but that was about it. By her bedside, however, we had some books and soft blankets and while I would do skin-to-skin with her, my husband would read to her. I think that was very helpful for our whole family.
6) Try not to worry too much about the nurses-- they're so good about always washing up and sterilizing. I know it's scary but you'll get through this! My baby was very small when she was born and had lots of issues in the NICU. She's six months old now (three months adjusted) and is doing great-- no issues whatsoever.
Good luck!
1. Yes. Andrew had a level 2 and a level 4 IVH. If you have any questions feel free to email me. It's Kathy marie 81 at gmail. He is doing really great now and no affect that we know of.
2. Andrew's did with 2 rounds of IB Proufen (spelling) !
3. I don't know exatly - he was on a ventillator and an oscillator (high frequency ventillator due to a collapsed lung) and then a ventillator again. Maybe a few weeks?
NICU questions
1. 117 days (born at 26w2d) but he had no surgery
2. We didn't really bring anything but books to read to him.
3. They are great about washing hands, so no!
Hugs!
1. i don't have experience with IVH but i have read that a level I or II is the same as none at all.
2. PDAs--stella's was fixed with 1 round of medicine.
3. Stella was on the ventilator for about 3.5 weeks. they tried to take her off at about a week old & she was off for a day but then she got pneumonia which caused a huge backslide. I would say the average time on a ventilator for a 28 weeker is like 2 weeks from what I have read.
1. stella was born at 28 weeks, 3 days. she was in the NICU for 89 days. I would plan on the twins coming home around their due date (+/- 2 weeks).
2. We brought in lots of blankets for her isolette, then clothes when she was big enough to wear them, & also an ugly doll that watched over her (she still plays with it!).
3. worried about this all the time. Not a whole lot you can do about it. Just watch to make sure they are washing hands & sanitizing & keep the visitors to a minumum.
hang in there!