Full/Near-term NICU support thread-- May/June 08 - Page 7

[2bluefish]

#3 is getting PT and OT. He's doing pretty well. He is tiny, but my other 2 were tiny babies too. His head hasn't grown at all for 3 months, so that's a source of concern. A CT scan showed that his brain is tiny, and they say the plates are fused already (though our chiro who does cranial sacral says no they aren't). He has only smiled a handful of times. He interacts with me - wants attention, but he doesn't really play. Has difficulty using his hands to play with toys. The gross motor delays don't worry me as much cause I think he'll get there. I can see where he's progressed alot with therapy. I guess he's tired of me talking about what he can't do - he's sucking on his hand right now, haha!

[mommy2one0326]

My dd was induced at 38 weeks because of a brain malformation (dandywalker) and because of excess amniotic fluid. They induced me because they were worried about not being able to make it to the nearest hospital with a nicu (which was over an hour away) and a cord prolapse. She spent the first 4 days of her life in the NICU because they wanted to observe her....she never really had any problems (or if she did they didnt' tell me). I wasn't able to breastfeed because they didn't have doctors orders to allow me to breastfeed her. Luckily I knew I wanted to and was able to successfully breastfeed with the help of the local hospital (not the same one). She was given pumped breastmilk but not allowed to actually breastfeed....she also had a paci within 10 mins of her birth and was given bottles in the nicu. She is doing pretty good now. She has hydrocephalus now and some hypotonia in her legs but otherwise doing great.

[sbrinton]

My son Micah was born at 35 weeks and 5 days. We spent about 3 days in the NICU. I had a really beautiful natural birth with a midwife, in spite of the hospital. Even though my son was doing fairly well, because he was 2 days shy of 36 weeks he was required to go to the NICU.

I so appreciate all the technology that they have - when it is needed. In our case, they put our son through a lot that was not necessary. He had some amniotic fluid in his lungs because he was born quickly and he had low blood suger (because they wouldn't let me nurse?), but otherwise he was a very healthy boy for his gestational age. Still, the nurses and doctors put us through the ringer and made us worry the first day and a half. We had some nurses who ignored our requests to only give him breastmilk and gave him sugar water, and who did procedures when we weren't present despite our request to be there.

But we also had nurses who were amazing and overall I'm so thankful to be at a great hospital. We were at a hospital where all of the NICU rooms where private and had 2 beds along with the crib/isolette/warmer or whtaever other equipment was needed so both parents could stay around the clock. There was a comfortable chair for breastfeeding and all sorts of things to make it easier. Pumps, pillows, whatever you needed really. The rooms had fridges, televisions, showers and private bathrooms too. There was a sweet play room for siblings as well. We were assigned 1 nurse at a time for 12 hours and the same nurse 3 days/nights in a row. NICU's that are set up like this are so much better for the family and the baby. We're pregnant again and may end up with a premie, and although we've moved, I'm only willing to go to a hospital that has a NICU with private rooms.

[Jilian]

Sbrinton, that sounds like a wonderful NICU! I've never heard of one like that. They really need to make all ICU units like that. When your child is so close to death a little privacy and some comforts really help. I'm sorry your son had to be in the NICU when he really didn't need to. Congrats on your pregnancy and I hope you never have another NICU experience again.

[NewTennMom]

Hi everyone....

I don't have a preemie, and I am trying to avoid going into labor early. I'm 34-35 weeks pregnant, and have already been in L&D twice because of contractions that wouldn't stop. The first time, I didn't even know I was having contractions.

I'm not sure if they have my due date right... I have heard anywhere from Sept 9th to Sept 2nd. Every single U/S we have had, they have said she is 'large' for her age (I know U/S weights aren't totally accurate). I feel I might be a little bit farther along then they think.

I am on terbutaline to stop/slow the contractions, but still having them daily (though with the pills, they are down to 3-5 an hour). Also, I have been given a fetal fibronectin test, and it was positive, so the OB has put me on Antibiotics as well. I was given a round of sterioid shots to help with my little ones lung development.

The pregnancy has been rough... with the threat of Downs in the beginning, and lots of extra testing and U/S's (CVS, Echos, all kinds of 'extra' stuff). Thankfully, everything has turned out ok, and aside from this, I am growing a healthy baby girl.

Thank you all for your stories, and I hope that my baby girl can stay in there and cook for a little while longer, but fear the odds may be against me.

[veganone]

Hi TennMom. I have a 35 weeker and I'm surprised they are doing so much to stall your labor. They just delivered me with no questions when my water broke. I wish they had tried to let DD cook a little longer.

But, for what it's worth and not to say it's easy, most babies do well after that point. It's WAY harder than F/T, but the outcomes are generally really good. DD is almost a year and other than being tiny you'd never know she was early.

Hang in there...

[JessicaS]

Hello,

My ds spent two weeks in NICU.

When he came out they were concerned regarding a murmur they had heard, his kidneys which they had seen issues with on the U/S and also his tummy was swollen.

They drained his tummy of fluid for a couple of days. He had jaundice.

He has pulmonary stenosis and a couple of small holes in his heart. They believe those will resolve on their own but we have been seeing a cardiologist. We also have appts with a genetics clinic as they believe he has a syndrome.

They believe we also had an issue with ABO incompatibility.

He was term.

[Jilian]

Abi: My DS2's issues were very similar. He had 2 holes in his heart along with his pulmonary veins being completely unattached. He had the heart surgery to patch the holes and to connect the pulmonary veins last year when he was 2 weeks old. They monitor him now for stenosis.

Has the cardiologist had any suggestions for the stenosis? A lot of other children with my son's defect (TAPVR) have had PV stenosis issues and they usually opt for the cardiac catheterization first and try to "blow the veins open" before resorting to surgery. I think they inject the dye first to see just how obstructed they are.

I hope your genetics appt goes well and you have some answers soon. Hugs to you and your little man!

[JessicaS]

Originally Posted by Jilian

Abi: My DS2's issues were very similar. He had 2 holes in his heart along with his pulmonary veins being completely unattached. He had the heart surgery to patch the holes and to connect the pulmonary veins last year when he was 2 weeks old. They monitor him now for stenosis.

Has the cardiologist had any suggestions for the stenosis? A lot of other children with my son's defect (TAPVR) have had PV stenosis issues and they usually opt for the cardiac catheterization first and try to "blow the veins open" before resorting to surgery. I think they inject the dye first to see just how obstructed they are.

I hope your genetics appt goes well and you have some answers soon. Hugs to you and your little man!

They believe the stenosis is mild and they are just keeping an eye on it for now, they believe it might resolve itself. We see the cardio in another six weeks and they'll look at it again.

In my previous post I failed to mention that by the last cardio appt one of the holes closed on its own, which was a huge relief.

Our Ped called the genetics clinic and had our appt bumped up to Monday! Yay!

[Jilian]

Yay for the hole closing, was it a PDA? Evan had a PDA and PFO, the PDA was closing on its own but the PFO was not. That is great that your appt was bumped up.

[JessicaS]

Originally Posted by Jilian

Yay for the hole closing, was it a PDA? Evan had a PDA and PFO, the PDA was closing on its own but the PFO was not. That is great that your appt was bumped up.

They are/were ASDs.

[JessicaS]

We didn't learn anything at the genetics clinic, which wasn't really a surprise, the tests aren't back yet. They are checking for a couple different things.

They just asked a bunch of questions and that was it.

[hipmummy]

Thank you for starting this thread. Ds was 41 weeks and on the NICU for a week for a severe stridor,jaundice and infection. He was also under cardiac observation because of a severe erethymia in utero from 35 weeks on (went away after fetal circulation began). It was awful for us and yet at the same time I never felt right about posting in the reg NIVU forum, yet I had a lot of pain ie not able to hold ds for over eight hours and not being able to nurse him for 14 hours. We survived!
We have the Nicu reunion coming up but I really do not want to go, we actually are going to be away so we can't attend it. Some of the babies who were in the same time as ds had been three 3 weeks some 7 the average stay there was 2.75 weeks for all ebf infants. So a majority of the reunion babies are babies who were there a while. DS was there 5 days. To me that was way to long, but it is nothing compared to a premie. Is anyone going to their reunion???

[Jilian]

I wish we had a reunion! But DS2 was in the cardiac ICU and they had children from birth up to 18 years. They don't do a reunion. But I often wonder what came of DS's neighbor in the ICU. She was born a few days after him with HLHS and her mom pretty much abandoned her. The nurse let me go over and talk to her while she cried so she wasn't alone. I think of her a lot and hope she's doing well.

[Amys1st]

Hi guys, popping in! Maggie was a micro so cant really add anything but about the reunion- I was a complete wreck to go to it but we are so glad we did. We saw others from when we were there. Maggie was just over 18 mos so it was fun to see the recent grads, their parents had a "mini reunion" of their own just all together. They all were so glad to see the tots from Maggie's "class" and we had fun talking to the recent grads and answering their questions.