Wednesday, April 20, 2011

Boring Night

Today Grace's team said the plan for her was to have a boring night. Dr's orders! I sure hope that's what she's having!
Monday morning Grace had been desatting for over an hour, but it wasn't anywhere near as low as it had went on Sunday morning. But they were down into the 70s consistently and they went up on her vent settings and gave her more sedation and they were still desatting. Even though they weren't extremely low it was so upsetting because she needs to keep her sats up on the vent, we no longer have ECMO to live for her.
Someone asked how she did if she was hand bagged, which she hadn't really been much. So they said why not try it and see what happens? So the RT (respiratory therapist) who I really like, Delaney, started on it. Grace was fine. Her oxygen went back up into the high 80's and a few times hit into the 90's. Still not 100 but much much better than what the oscillator was giving her. When Grace was put on the oscillator she was not extremely sedated and she got really upset. I really think it scared her. I know she's sick and I know that she's not a "normal" newborn but she is still a full term, 3 week old baby. she still can get scared. And the reason why she was put on so many drips and  PRN's to keep her paralyzed was because she could not wake up on the oscillator without raising her blood pressure and dropping her sats. I always thought she simply hated the oscillator and was freaking out. Well someone else (I had slept in the waiting room for about 3 hours the night before so I am not sure who even decided it) made that connection as well and said "she doesnt like the oscillator" and they got her a conventional vent and she's been on that since Monday around 6 am! She is still on Nitric but is doing well. Her settings are pretty high still and do need to come down but they have weaned a bit today and she has tolerated it.
She is having a somewhat hard time with her temperatures. She keeps getting hot and then cold. they aren't sure if she's developing an infection or what is going on. She has been on an antibiotic since she got there though, so the likelyhood is low. I think it's because she hasnt had to do it herself in 3 weeks, ECMO did it for her and she's not used to it.
She is still paralyzed, hopefully she can start waking up more tomorrow the next day. I love seeing her beautiful eyes, even if it's just for a few minutes.
This weekedn was really hard, it was hard to see the light it was hard to not think the worst was happening. We were told as soon as we got to Mott that there would be ups and downs and to expect them but I never ever imagined that the downs could be so incredibly down and hard. And that the ups would be so small, but so big at the same time, if that makes any sense. But when I think that last week she was completely supported by ECMO and this week she is not, well that is a step in the right direction. Even though she still has quite awhile on the vent, she's just on a vent and not a vent and ECMO. It's baby steps and I have got to realize that and take it for what it is. I think I have alot of trouble with it, because 24 days ago I had never even heard of CDH, I never knew such a horrid defect existed. Let alone what it entailed. When she was born they said "oh they see this often and fix it no problem" and then the first dr who talked ot us at mott said that CDH babies go home anywhere between a few weeks or a few months and that he thought we could expect weeks not months. So to know that we've been here weeks and we have MONTHS to go, is hard since we never expected any of this.
 Adam and I are both having a hard time lately because Grace is the only baby in her room who cannot be held and who cannot be awake and who cannot be touched even sometimes. She is the only one who cannot interact, the only one who is not fed breastmilk or formula, even if just from a tube. It is really hard to see all the other babies making progress but her's isnt so drastic. Well none of those babies have CDH so it's not the same. It's just very painful right now. We would give anything for her to have her eyes open and to hold her. Oh to hold her would be the most amazing thing in the world. but we can't and everyone else can but they don't even come visit! So many things we don't understand right now. And we probably never will.
So please pray that Grace has a boring night, that we could not see the other babies and feel upset. Pray that Grace can start waking up more in the coming days and that we might be able to start talking about getting her chest tubes out and her intestines put back inside. She has a long long road ahead of her but she is so tough, she is such a fighter. Nobody works with her without commenting on her sass and spunk! She's an amazing girl for sure.


  1. Praying for your baby Grace to have a boring night except for the miracle that God can do. So thankful she has headed in the right direction and has that sass and spunk! Will continue to pray for your family. Barb Heinauer

  2. Hang in there. I've been where you are and it is hard. To hear the other babies cry and being held is very hard. Just hang in there!!

    Kristy Cheek

  3. Reading your posts brings back so many memories - when Andrew was in the hospital, it was really hard to see all of the other parents be able to hold their babies while ours was struggling to survive on ECMO. We weren't able to hold Andrew until he was 6 weeks old. The nurses had to constantly remind me that CDH is a long road and that we needed to have patience. It was really hard becauase like you, we had no idea that he was even sick and then his entire time in the hospital was exteremly stressful and overwhelming.

    It sounds like Grace is taking baby steps in the right direction so hold onto that and as Kristy said, hang in there - Grace has been an amazing fighter so far and she will get there!!

    Thinking and praying for you all - please know that you are not alone in your feelings - and I hope Grace had a boring night! :)

    Mom to Andrew
    CDH/ECMO Survivor

  4. I understand exactly how you feel. Normally, you want a baby to stop crying but can't hear your baby cry, it is so much harder. Hang in there, there are so many people praying for you and Grace.

    Mom to survivor Ramsey

  5. Well didn't we always say she was sure to be sassy? :)
    Loving. You and your sweet family from miles away and praying.
    Looking forward to the update on the day you get to hold precious baby Grace. I know its cliche but hold on my dear friend and have faith.


  6. Praying hard that Grace continues to improve & has no more set backs. I'm praying so hard for the day you finally get to hold her & hopefully nurse her. Hopefully the months will be able to turn into weeks so your family can all be together!

  7. I found you via Made by Maya on FB. We had a similar journey almost 10 years ago with our son. We did not know until his birth about his CDH, he had to be lifeflighted on the day of his birth to a hospital in the city. I remember those days of just wanting to hold him, but being told even gentle touch may be too much for him. And feeling so helpless.

    I am very encouraged that Grace is making progress - getting off ECMO and onto a regular vent is a great accomplishment! Cherish the small milestones - every new milestone is sweeter when you have to fight for it.

    Much love to you and your little sweetheart. My Patrick will be 10 in September. He swims for the YMCA and loves to play video games. Praying for a similar outcome for you. <3

  8. we didnt know about CDH until he was born either...and I was worn out from researching hrs thru night then at hospital all day.
    It is so hard to miss out on all the normal newborn stuff. Im just now, 2 yrs later, getting over JUST that part. Not breastfeeding, never wearing his newborn diapers and clothes that we had for him, not holding until 9 wks old and then it was awful b/c I would fear him desatting. =( ECMO is ROUGH. And Camden was on it long too...and their bodies do have to adjust temps, and they arent used to being stimulated. SO MUCH to work out, and I never saw that light at the end of the tunnel either. I hate HATE that you have to go thru this more complicated CDH rd. I ache for you, because since her journey has been so similar to ours, I know how gut wrenching it is. And no we dont know why, and we may never know, but I do know that I am thankful for God's grace all the time. Many prayers for her and ya'll. Im so thankful that she has wonderful parents to care for her....that is so very important!! ((hugs))