Sunday marks Grace's 16th week of life, 16th week of NICU visists, 16 weeks of this beautiful little girl fighting each day to live. Grace is so alert and so much more like a "normal" baby these days, everyone says "she likes her shunt" and it is so amazing to look at her and remember where she has been the last 16 weeks. I never thought it would be true but looking at her, it is seriously hard to ever picture her as the same baby on ECMO with her intestines in a silo. I found a picture on my phone that Adam had texted me months ago, of the vent showing she had .8 lung volume, how excited we were, how far we've come!
Grace got her PICC line out on Monday, so exciting. The PICC had delivered all of her conintuous drips, she is off of all of her IV sedation/painkiller meds and is weaning the oral Methadone and Ativan. The PICC could also give any other meds she might need, but she doesn't really need anything extra these days and it could be used to give blood, but aside from a transfusion after her shunt surgery she hasn't needed blood in a really long time, and the PICC was being used for drawing blood gases, which we don't really need anymore either! It's very exciting that she doesn't need that port! Now Grace is down to two pumps on her IV pole, 2, there was a time when she had the double pole, plus the one on her isolette AND pumps running off ECMO. Now she only has her Flolan and her feeding pump. That's IT. She is still connected to the monitor, one wire running from her leg and 3 leads on her chest/belly and she also has her g tube to drain into a bag so she is not completely "wireless" but so so much more than she used to be!
Grace has been smiling, it is the most amazing thing ever. I just sat and cried the first time she did, I couldn't help it, I am just SO happy. She has this mobile that she used to love and for awhile just didn't even give it the time of day, but we kept it, thoping one day she would like it again and she does! She LOVES to watch her bugs go around and sit in her vibrating bouncy seat. She loves to sit in the door of her room and watch all the people in the main room, she's a nosy little girl. Sometimes she just complains, she is perfectly fine and satting great and nothing is going on but she is wide eyed and yelling. She has quite a story to tell and wants to make sure everyone is aware of her presence. Last night when she got her breathing treatment (she gets them 2x a day) it was so cute, because she was screaming but she wasn't actually crying and she kept looking out of the corner of her eye at the RT, as if to say, "she's still here? Go away!"
Though she is doing better than ever, there are still a few things we could really use some prayer for. The Lord is amazing and has worked in wonderful ways in Grace's life, she's such a miracle I know we can overcome these next few things that we need to!
1. Grace really needs her pphn to improve more, her ECHO's have been unchanged for quite some time now, obviously great that it hasnt gotten worse but we need them to improve so that she can start weaning FLolan. Flolan is a 24/7 coninuous drip through the Broviac in her chest that is to help her pphn. The ideal thing is that she goes home off of it, and her pphn is controlled by oral meds. She is at the max dose of it. But until her pressures lower more she cannot wean Flolan.
She is on a med called Bosentan which is oral and her dose is being highered every other day on that to see if it helps and they can wean Flolan. If her ECHO remains unchanged after the higher dose of Bosentan then they are goign to see if they might be able to try Sildenafil one more time to see if it helps. If not then she will go home on Flolan and in time hopefully her lungs will grow and develop better and she will be able to wean it. They have switched from giving her meds through the G tube, into her J tube thinking that perhaps her stomach isn't completely absorbing the Bosentan which is maybe why her ECHO hasn't changed.
2. Grace's abdominal incision is having trouble healing, most of it looks great and in fact is so light it's already hard to see. One spot however has always been a little bit of a troublemaker. It had healed up ok and is now broken open and has even started to bleed. Please pray that this wound can heal quickly.
3. Please pray that her stomach would just start to work. Pray that she could begin moving things through, right now, she is putitng out so much bile into her drainage bag, and they aren't sure she was absorbing the meds, please pray that her stomach will just wake up soon and begin working like it should so that we can start feeding through the stomach like normal or even just that she would tolerate moving her own digestive juices through and we could clamp it and not have to have a huge drainage bag.
Grace also has awful reflux, please pray that it might get better.
Even aside from all of those things, she is doing amazingly well. She is so so gorgeous, I just cannot belive how great she looks after the shunt. I am so glad. We are so incredibly blessed to have our sweet girl, she beat some incredible odds.
Please also pray for a family we met in the NICU who's own sweet girl went to be with the Lord over the weekend, our hearts ache for the Martin family. As close as she sometimes came to joining the 50% who do not survive, I cannot even imagine it actually happening, and how hard it has to be.
I heard a song on the radio recently that I am in love with, by Stephen Curtis Chapman and it says "and tell the story of grace with every move that you make and every little thing you do" Grace has certainly lived up to her name, each day of her life has been telling the story of Grace, what an amazing little blessing she has been, not only to us but to everyone else who knows her.