Wednesday, June 1, 2011

Steps in the right direction...

Yesterday morning when I called to check on Grace, her nurse told me she was propped up in her boppy! She texted me a picture that was just super cute and said that she liked it! They said Grace was not as irritated as she had been but was still getting upset frequently. When I got there last night, she was up in it and looked happy but then got upset and needed a diaper change and then decided she had had enough of her boppy. She has been tolerating her feeds pretty well, obviously her stomach is being drained by the g tube and she also has another Replogle, which is a tube through her nose into her stomach, to drain the stomach as well. I hope she can lose that soon, she hates having it in there and honestly it kinda bothers me too since the purpose of the g tube is to drain the stomach she theroretically should not need the Replogle but she does so I hope soon she doesnt. Her feeds are up to 3 cc per hour and they have been added to her daily fluid intake so her TPN is starting to be weaned! She is officially finally a breastfed baby (sort of!) She is pooping like crazy too, about 5 a day which is just great news! Things are moving like they should!
Big news for the day though, is that Grace is no longer on Nitric! Woohoo! They stopped it this morning and her first gas after stopping was actually better than the last gas on it! Her flolan is quite high, but how great that she is off Nitric and they havent even restarted Slidenafil! They will hopefully restart that next week and her gut should tolerate it since it is tolerating food.
She will have an MRI tomorrow to determine the effect that ECMO and the large large quantities of sedatives have had on her brain. She had had some spots of concern on one of her cranial ultrasounds while on ECMO but a follow up ultrasound did not show anything. Please pray that the MRI shows a completely healthy brain! She will have an ECHO on Friday to access her PPHN after being off Nitric, please pray it is still controlled or even more controlled than it was!
Pray she could be extubated sometime next week, she hates her tube and 2 1/2 months is an awfully long time. I constantly wonder what her cry sounds like..
Please pray that she is finally on the upswing, that she is finally on her way to our home, that she could finally be more comfortable and happy. I am really hoping and praying that she is finally on her way to recovery. (as much as one can recover from CDH) As each week passes, it seems as though it gets harder for everyone. Harder for Grace to stay happy, harder for her to be a "patient patient" harder for the boys to cope (which is why I am now home most of the day with them and switching evenings with Adam at the hospital) Harder for Adam and I to maintain our marriage, we communicate solely through text, or 5 minute conversations when one of us is out the door and the other is just coming in. As a family we used to do alot together and always had dinner together, now its very very rare that all 5 of us are together and obviously all 6 are never together. I'm having a hard time getting enough sleep and pumping. I don't konw if it's the stress of everything or what but my supply is just dipping constantly, it seems I cannot ever get it up to where it needs to be. I am pumping about half of what her full feeds will be. I certainly look forward to the day when our whole family can be together again and our time in the NICU can be just a memory.


  1. Continuing to remember Grace's family during this stressful and exhausting time...
    Love and prayers from North Carolina...

  2. Great news for Grace!! Sounds like things are going in the right direction. Sending prayers for a good MRI and an ECO that shows decreased pulmonary hypertension.

    I know how hard it is to be separated from your husband and family during this time. We were in the same boat, we didn't even see each other most days as he would go down to the hospital after work each day and spend the night down there and then drive all the way back for work the next day, while I spent my days there and was with the other kids all night. We had never really used text before but during that time, it was sometimes the only way we communicated!!

    Do you have a family member that can maybe keep the boys overnight maybe one night a week? What ended up working great for us and was really helpful to keep us all connected as a family was on Friday's, my mom would take the kids overnight and then my husband and I would stay together at the Ronald McDonald House and be there with Andrew together. We would usually grab dinner somewhere near the hosiptal, (kind of a "date" night for an hour or so)and then spend most of Saturday with Andrew. We would then go home together for the night, pickup the girls and be together for Saturday night and then go to church and breakfast together on Sunday morning before heading back to the hospital when the girls would visit with Andrew for a short time before heading home with one of us. It wasn't a huge amount of time spent together, but it really helped us stay connected and feeling like a bonded family.

    Still hoping to get down to U of M to meet you - sending prayers - you will all be together again soon!!

  3. Opps forgot to sign my comment above -

    Mom to Andrew
    CDH/ECMO Survivor