May 10 2011 will be a day I will never forget. I can't believe what a good day it turned out to be! I wanted to update last night and then I fell asleep when I was putting the boys to bed!
I got to the hospital around 11 am yesterday and when I walked in, Grace was being suctioned which she hated and she also didn't have her repogle tube in her nose. The repogle draws out all the bile in her stomach since it is not being used to digest food. She had it out because her nurse was about to put a new tube down, a tube to FEED her!! And what did our wonderful team of surgeons decide to feed her? Breastmilk! A very little amount, 1cc per hour but what wonderful news! I hope she has been tolerating it!
A little while later her nurse came back to me and asked if I was going to be there all afternoon and I said I would for most of it. Then she said "do you have anything to you need to do for a few minutes?" and confused I said "Sure, I could find something to do if you need me to?" and then she said that Grace really needed a new bed, they are supposed to change out thier isolettes every 2 weeks and she's had the same one for 6 and while they changed it out, they were going to let me hold her for about an hour!!!! I couldn't believe it, so I ran to the bathroom and got a drink and came back to hold her!
Let me tell you, holding a baby who is intubated, with Nitric, has a chest tube and a healing incision and about 10 lines running from her is no small feat. Grace had a hard time settling down at first, she was pretty upset and then she would calm for a minute and then start up again. We suctioned her which did help but I think she was little gassy from feeding and then after I put her back down I discovered she had a dirty diaper and that probably was a big part of her problem! But after about 20 mins of trying to calm her down she fell right to sleep and looked so cozy sleeping in my arms. It was so amazing then. I am so so glad they let me hold her, 6 weeks was a long time! We have to wait for the chest tube to come out to hold her again but I'm thankful for the sneak peek:) It just felt so right to have her in my arms finally. She is so tiny compared to the boys, it's always been really hard to think about her size when she's always in the bed and looks huge compared to the other babies around her. She is such an amazing little girl!
I'm still not sure what her ECHO showed the other day, but it must have been pleasing because they are weaning her Nitric! Viagra must be working nicely with Flolan. Yay! The next steps would be to wean the vent, and wean the Flolan and she is most likely going home on Viagra. (Don't get too excited, home is still far far off!) At some point soon, I would love to start seeing a wean on her sedatives. I think she could handle it. Her drips were started out at 20 when she first admitted and are now up to 240, weaning will take awhile.
Oh how could I forget, Monday I also gave her a bath! I felt like such a first timer! I've been bathing kids and babies for 7 years and was so unsure of what to do! But she liked it and we lived through it! She did however kick over her tub of water, just kicked it right over all over the floor. Her acts of rebellion have gotten much tamer! I also worked with Dan more on stretching out her shoulders and arms, with some massage and she did not seem to like it much! Im sure it hurts at first.
She also lost her Art line, it fell right out and they are not putting it back in! It was an Artierial line which is like an IV but goes into an artery and it was continually monitoring her blood pressure and was used to draw her blood gasses from. Now they only check her blood pressure once and hour with a cute tiny little cuff!
So we had two days of great great news for Grace. I can't begin to tell you how happy I am and how encouraged I am by this weeks progress!!! Keep her prayers coming!!!