Monday, May 30, 2011

Movin on up...

Grace made a big move last night which we are really hoping will help her to get moving on this recovery thing. The NICU has 4 rooms or bays with 9-12 beds per room. So there are alot of things going on each day, alot of noise alot of babies crying alot of family members and drs and nurses. She was also right next to the door and the sink. She was always so agitated. When the room got noisy, you could just watch her sats drop and her heartrate and blood pressure rise. I am so thankful for Grace's night primary, Jennifer because she got Grace moved into the isolation room last night! So she is in a room that has a door that could be  closed if need be and no other baby at all! It will be so nice for her to have some peace and quiet and I really think it will allow her to heal faster. It was somewhat an ordeal gettting her moved, since she has one IV pole, one ventilator, and one Nitric Oxide machine. As well as the isolette and she has a chest tube and all the cords and all the suction equipment. So she got a new vent and was bagged on the way over, it was just next door and one RT to push the Nitric, one RT to bag, one nurse to push the IV pole, one to push the isolette, one to hold the doors. And what was mom's job? When Grace got to the doorway of her new room, I picked her up and carried her into her room and to her bed. Having that girl in my arms is heavenly. I can't wait till she is finally extubated and I can hold her all the time. She was looking all around like she was thinking, what in the world just happened? I am in a whole new room! Then she promptly fell asleep and looked so peaceful. When I called this morning, she hadn't required any breakthrough sedation overnight! Huge since she had been so agitated lately that she had been requireing alot!
Grace started on feeds on Friday, and I thought she was tolerating them well and also thought that not tolerating them wasnt really an option since they are being fed straight into her intestines. But after 12 hours or so of feeds they were stopped. CDH babies in general have alot of reflx, vomitting, and retching. Grace at first was just doing alot of retching and then bile started coming up. They decided to stop her feeds and are trying again today. I (and a few nurses) think maybe she is just gagging on her tube which then causes anything that is pooling in her stomach to come up. I think that when she is extubated she is going to be much different. Speaking of extubation, really really hoping for sometime this week, at the latest early next week. She is doing great with vent and Nitric weaning, weve been able to make a change each day and not go back. She needs to have an IP of 15 to sprint again and extubate and her IP today is 16! woot! Her Nitric is 4 and should go to 3 tonight, and the original plan was to get Nitrc off before extubation but now they say that if she is ready to extubate but not ready to br off Nitric they will deliever the Nitric through Nasal cannulas. I cannot wait. I think I may cry when she is extubated!
The new room, a fan (she keeps getting hot so I got her a fan) and no tube will make for a much much happier Grace. Maybe with all these things, we can get her working on feeding and drug weaning and then get her home by fall!
On Friday I had the pleasure of meeting Noah and Carrie, Noah is a 4 year old CDH survivor and is just as cute as could be. It was so encouraging and nice to meet them, Carrie thank you so much for stopping by and chatting with me.


  1. I can see you smiling through the screen :D

  2. Yay!!! What great news!!! I am so happy that she got a private room! We will be praying like crazy for extubation this week and that those darn feeds start picking up. I will look for those tube things we talked about this week! Thanks again for chatting with us for awhile! It was great to meet you!!

  3. We are expecting a CDH baby and I've read so many blogs now of various babies.

    I have also been following Grace's story and your comment today really hit home as to how much you both have been handed and Grace's amazing yet heartbreaking battle to overcome CDH.

    "Maybe with all these things, we can get her working on feeding and drug weaning and then get her home by fall!"

    Your journey is one with incredible hurdles and hardships and through it all I hope, in addition to feeling so very proud of how little Grace is fighting, you are also very proud of yourselves as parents. While the fight alone is Grace's battle, your perserverance, optimism and patience is amazing and there is no doubt that she knows how very much you are both fighting with her.

    All the very best in your struggles and I hope, that Grace continues to amaze those around her.

    Many hugs.

  4. Continuing to think of you all and to rejoice in your ability to be positive and optimistic in the face of such difficulty... I hope that Grace LOVES her privacy and will respond with feeding progress and drug/oxygen weaning!

    Clara's (CDH 3.23.11) grandmother

  5. Sending continued prayers that Grace enjoys her new surroundings and begins to make some really good progress. What an amazing girl you have there!

    Mom to Andrew
    CDH/ECMO Survivor