Tuesday, July 21, 2009

Adjusting

I'm sure like most if not all NICU parents, SSG and I are still adjusting to everything from our daily routine to the ups and downs of NICU babies. We tend to try to sleep in and have restful mornings and then go in for a visit in the afternoon/early evening. At this point it seems to be an okay schedule. We're exhausted all the time so I'm not sure it matters when we go in. Ella needs sleep and lots of it so it seems like a good thing to let her sleep all morning into the afternoon. Gestationally she is 32 weeks so she's still young and her brain still needs developing.

Then we have the ups and downs of Ella doing well one day and perhaps some set-backs the next. From what we've read and heard this is normal but it is going to take a while for us to get used to that. We had a family meeting with the attending, nurse, and others to go over where Ella is and what they forsee in the next week. SSG is much better at the details but in a nutshell the attending (who we call Dr. Smartypants because she is clearly brilliant) isn't happy with Ella's spells where she forgets to breath which then makes her heart rate drop. While she is off the c-pap assistance now she may have to go back on it to help with the spells. It's basically air forced through her nose that keeps her lungs inflated. They also detected a heart murmur again and the echo revealed that the cause of the original murmur is resolved this is a different original. Apparently though it's normal and they don't treat it so it should go away.  She is doing okay with her feedings though she has had some set-backs...again to be expected. The good news is she has gained some weight and is at 2 pounds 8 ounces (she was born at 2 pounds 5 ounces). 

She is hanging in there for sure but she's little so we have to be patient. This is the hardest part. It's exhausting worrying all the time and we are doing our best to stay positive while being realistic. 

Thank you to everyone's good thoughts and prayers...keep them coming! 

3 comments:

Craving of Motherhood said...

She is a miracle and we think of you guys daily. Hang in there.

motherwilling said...

Hang in there. Your baby girl is growing!

thiswillbe said...

Sounds like you both are doing well under difficult circumstances. I am glad you are getting some sleep to help keep yourselves strong for Ella. The added weight is great news and hopefully the other worrisome things will resolve themselves positively soon. My thoughts and prayers are with you every day!