She had a bath last night, and tolerated it quite well, and was fine as soon as she was picked back up. It is amazing to watch her act like a "normal" baby. She moves her hands around the way babies do, she sleeps and moves her mouth while she is. She makes these little sighs, and she yawns which is just so cute. She is just making such strides and I love it!
Nobody can believe how well she is doing! She is amazing!
We serve an awesome awesome God, nobody could look at Grace and deny that. With Him, she has overcome amazing obstacles, she is living proof of His love. From a medical standpoint, she shouldn't be here and she is. From the begining, He has been with her. A baby born with as severe CDH as her would have been intubated immediately upon birth, some babies even go on ECMO at delivery, but they certainly are not allowed to even try to breathe on thier own, it could have a hugely negative impact on thier survival. But Grace was not intubated immediately, and WAS given the chance to breathe, and boy did she try and she is doing so great now! I really believe that everyone who cared for Grace and I during her first hours were put where they were by God for Grace. Her outcome could have been alot different, if even one person had made a decision different than they did and I am so thankful.
Her care team has been more than amazing and we owe them all so much thanks for bringing her to the point she is at. And certainly everyone's thoughts and prayers and help. The Lord has used all these people to heal Grace because He is a good and loving God and when I look at Grace I am just blown away at the gift that has been given to me.
Our next steps that we could use prayer for are
Pray please that she could wean her oxygen with no issues, 4 liters is way too much to go home on!
Pray that she will continue to tolerate her sedation weans without issue
Pray that she will get the hang of using her mouth and that she will soon be able to tolerate using her stomach too
Pray that we can wean the Flolan without any worsening of her pphn.
Pray that she just continues on this forward path that she is on, until finally she is home!
Thank you so much!
|Ruffle Butt. Her first outfit!|
|In her big girl crib!!|
|Thank You Miss Dacia for my jammies! After bath and ready for bed!|