Today Grace is 6 weeks old, I cannot believe it's been 6 weeks already and at the very same time I can't believe it's ONLY been 6 weeks. I have to admit that part of the reason the blog was not updated for so long was because I was having a hard time. Not Grace. She's been pretty stable lately. As each week goes on, I've been just dwelling on everything, and 6 weeks was starting to get me. 6 weeks is usually when you are leaving that sleep deprived haze of having a new baby, when life starts getting much closer to normal and my life is not going to ever go back to my normal. It will become a new normal and that's even pretty far off. My baby is 6 weeks old and I haven't held her yet except for those few precious minutes at birth. I've been dwelling on all of that, and letting it just get the best of me but today my mind was changed for me. You see, I am blessed to even have been able to hold her for those few minutes, I am blessed to have been able to sit by her bedside for 6 weeks, I am blessed to know I do have a future with her even if it is so much different than I wanted. I am blessed to be able to see her awake each day and to see her beautiful eyes and smiles. There's a baby in Grace's room who has been there for about a week or so, and though I don't know the specifics at all, I know the baby is pretty sick. Today there was alot of activity in her corner and the parents were very upset and we could overhear talking and it does not sound good at all for them and my heart was breaking for this family and it really hit me how incredibly lucky and blessed we really are to still have her and to know how far she has really come. One of the surgeons told us today that they see about 20 CDH's a year and about 3-4 of those are as severe as Grace. Wow. She is so amazing and such a little fighter.
Last week Grace got one of her chest tubes taken out! It hadn't put anything out for days so they decided to remove it! One more chest tube to get out and it's holding time! The remaining tube though, needs some prayers. It is the tube draining the chylous fluid. The fluid that is coming from her lymph nodes. She was put on Octreotide for a 14 day course and was taken off at day 7 because it was not helping to stop the drainage or slow it down, for now it is just a waiting game to see if it can resolve itself. The last 36 hours it has slowed it's output so I really hope and pray it continues to do so. If not, it is possible she could need a surgery to go in and fix it.
Grace started running a fever last night and was given some more antibiotics and tylenol and they took cultures to see if she might have an infection. Pray she does not. It could just be a virus or just simply that she ran a fever for a bit and we'll never know why but in a baby like Grace they don't want to take any chances.
Grace had her first visit with the physical therapist, Dan. There's not alot he can do with her right now because she is still intubated and has a chest tube but it's a good thing that he can work with her because it means she is very stable and tolerable! It's also good because she is at a point where they are worried about things like muscles and range of motion rather than whether she will survive or not. So although we are taking such baby steps towards home, they are still steps towards home. So Dan thinks she's going to need alot of work with her shoulders and arms, which everyone knew already, babies should be able to bring their arms together at their chest's and Grace is quite frog armed. He isn't too worried about how her hips are and he said actually her head is not too horribly flat.
Grace also had two baths, of course I missed them both. She is due for another tomorrow and they are supposed to wait until I am there to help. Oh, she also got her foley catheter removed so now we can change her diapers too! She is tolerating everything so much better than she was before. She used to raise her blood pressure and desat when she was touched, and repostioning her was terrible and now she doesnt mind. She might still get mad but she recovers on her own and quickly. She used to require numerous PRN's of ativan or Versed or Fentynal almost every hour sometimes and now she barely gets them.She is still on three sedative drips though.
There are talks of extubating in the next few weeks, which I think would be so wonderful but I am not getting too excited until it happens! Right now Grace is on Nitric oxide which is delivered through the vent, so she will need to succesfully wean off the Nitric and keep her pphn controlled without it before we can try to lose the vent. She will have another ECHO tomorrow morning so hopefully the Flolan and Slidenafil are working well together to control her pphn and we can start the Nitric wean.
I am so proud of my little girl, she is doing such a good job getting through this. She has come a long way already but still has a long way to go but she is getting there.
Thank you all for the prayers, the kind words, and for all the help. We appreciate so much the people who are helping us through this. Keep the prayers coming for our sweet sweet girl.