Saturday, June 11, 2011

A totally new baby

I can't believe how different Grace is these days. She used to throw awful fits and have so many moments of unhappiness and needed alot of extra sedation to even get through the days and nights. Whe an she moved into the isolation room, she became a little happier but still had her fits just not as much and needed sedation but not as much. Once she was extubated though, she has just soared. She tolerates things so much more, she is awake and happy alot. Grace is still weaning her sedation without issue. She goes down on Fentanyl at 9 am, Dexmedtomidine at 12 and Versed at 9pm, the full process will take awhile but at least it's happening! She is only getting 0-3 PRNs per shift as well! She is almost up to full feeds and is tolerating them wonderfully, she is having appropiate dirty and wet diapers, but is still on diuretics 2x a day. She loves being held and talked to. She starts to whimper a bit and then calms down. She had physical therapy yesterday and I heard she did great! The left side of her head is quite flat, so we are working on taking the pressure off of it, to help round things out.
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!
sleeping beauty
In her big girl crib!!
Thank You Miss Dacia for my jammies! After bath and ready for bed!


  1. I love seeing these pictures! Keep them coming. She looks amazing! She is a strong girl... your boys are gonna have to watch out! - Beth Russeau

  2. She looks great! and so do you Miranda! i am so happy to see all these pictures of your precious baby girl!

  3. I keep trying to leave comments and I keep having issues!

    I am AMAZED how well Grace has done the past several days. She has made miraculous strides in her recovery. What a Beautiful little girl she is!

    Janna Caravia
    Mom to Garrett, LCDH Survivor

  4. Wonderful to hear Grace is doing so well. I told Roger that I had a dream that she came home and in the dream everyone was saying how quickly she had healed. Shes beautiful just love those pudgy little cheeks. Just want to say that I think her parents are amazing people too. With all that has been put upon u both, and u held tight to ur faith. God has also blessed her with the parents she has. We will keep u all in our Prayers.

  5. She is beautiful!!! (And so is her mommy!) I am just thrilled to read of her progress! I just finished my prayer time for her and then decided to check your blog. How wonderful to read of her steps forward. I am praying for your whole family... I know you feel pulled in a thousand directions. I bet her "flat head" will improve. We are working to address that with Clara as well. Praying, praying, praying...
    Mary Ann in North Carolina