Moms of Micropreemies

irishdo

Did you find it almost gets harder the longer you are in the NICU?

DS (24.6wks) is now 9 weeks old (34.1 weeks gestation).  He is on 6L high flow and tolerating all his feedings, weighing in at a hefty 4lbs 5oz (born 1lb 12 oz).  We have definitely entered to long boring part of the hospitalization which is not a bad place to be at all.  It is just that progress now is much slower andthere are many days where there are no orders written at all, just to stay the course.  I find myself getting more frustrated now, maybe because he looks like a baby you could have at home.

dmblack

Yes.  As they get bigger and can do more things I got antsy to bring her home.  We spent 12 weeks in the NICU.  Hang in there your time will be short lived and you'll be bringing DS home very soon.  No orders means things are good....and he just has a few hurdles to get over before he's ready.

massnk

I definitely felt that way.  I was up there all the time and I couldn't stand looking at all the hospital "stuff" anymore.  I drilled my lo dr everyday on what needed to happen in order for him to go home.  Once he knew I could handle his feeding problems he was comfortable sending him home.  If he is having feeding issues I would demand a swallow study.  Our lo had a problem with thin liquids and needed to have his feeds thickened.  We found this out after we brought him home but I think had we discovered this earlier he would have been home even sooner. 

Denesdia

I definitely agree.  I really lost it those last weeks because I felt so ready to take care of DD at home.  Hang in there!

LWilli35

Yes. I think the hardest part was watching so many families come and go.  It just seemed we'd never get out of there.  What finally helped was that we got a roommate (DS was in a unit with pods) who was born a couple of months prior and was also a micropreemie.  That sense of stability really helped us.  Unfortunately, that little guy was still there when we went home, but it was comforting having that consistency rather than a revolving door next door.  Hang in there...you'll be home soon, and before you know it, the NICU will seem foreign once again.

lemen99

Yes and no. 

For me, the time on bedrest (2 weeks from 24w-26w) was so hard (pins and needles) and the first week of his life was so so hard.  The head ultrasound was not good and the collapsed lung was so so scary. 

Then it got better...by a month I felt it was so much easier....not fun, but I was coping pretty well. 

Once he reached his due date I started to fall apart until he came home 3 weeks later.  I just felt like he shoudl be home and nobody knew why he wouldn't eat and I became scared that he would never come home or come home and be healthy.

It's all hard though!!!!  I hope LO is home soon!

witt0198

Hard in a different way yes. At first there was no question in my mind that he was where he needed to be. The thought of taking him home wasn't the concern, it was survival. As the weeks rolled on, we started to feel like family that had stayed too long.....loved the nurses, always will, but it just felt like we needed to go now. That and I felt more and more like we could take care of him, and I wanted to take care of him and have him home so badly. The waiting is incredibly hard to be patient through. In hind sight I do wish I could have had more patience. Just enjoyed those days for what they were, and left Evan to develop at his own pace without so much pressure to take his bottles. 

 I'm happy to hear things are going so well! 

Million$$Baby

I do - it's part of a wave. In the beginning the whole thing is just terrifying. Things are touch and go and you're waiting for all kind of test results and things. Then you reach a period where things seem to stabilize and you relax a bit. Then it starts to feel like they're never coming home.

 Charlie and Lily were in the NICU for 94 and 99 days. They were born June 27, and by the time September rolled around I felt like we would never, ever be able to leave. When you near the later part of your NICU stay, you're (hopefully) just waiting for you LO to learn to eat from the bottle and breathe without the cannula. And if feels like they are NEVER going to do it. I remember my babies' estimated release dates being pushed back again and again and again and feeling like they would never come home. One day they would take their bottles like champs, and then the next day it was like they'd never even seen a bottle before. I remember about 2 weeks before Lily came home she started having desats for no apparent reason and I just lost it. I wound up sobbing in the middle of the NICU, "I can't take anymore!!!" (And for the record, things like that get you an immediate visit from the NICU social worker ) You will get there, but it definitely is frustrating at times!

Kate621

YES. Jack is 7 weeks old. I feel like we should be further along than we are. Our nurses told us this weekend that he would probably be there after his due date. I know that is just a general guideline, but it broke my heart. I just keep trying to tell myself that everyday that passes is getting us one day closer to going home. Hang in there girl. One day this will all be just a bad memory. Or that is what everyone is telling me at least....