Tuesday, April 26, 2011


Grace had a very good night, she tolerated being moved around and messed with quite well. She was awake on MOnday from about 6 pm until 11 pm. Her blood pressure rose a few times but not too high and mostly because her neighbors were crying. Grace doesn't care for apartment living. She was trying so hard to stay awake, fighting sleep just like a healthy baby would be. Both of her eyes were so wide open and she was trying so hard to smile at me. She got a few half smiles out. She seems to be alot more comfortable and happy than she has been. Her road is still quite long and hard though.
Grace has two chest tubes, one was placed when she went down for her initial repair surgery when she was 2 days old. That one has mostly stopped draining. She also had one placed on her right side about 2 weeks ago or so which is still draining a significant amount. Her dr's now suspect that perhaps it is a chylothorax, meaning her lymphatic fluids may be leaking into her lungs. They sent a sample of the chest tube fluid to see and we should know it it is that or just alot of fluid still coming from that side. If it is chylous then they will decide whether or not they need to go in and clear it out or if thye can just treat it with another IV medication. When it comes time for her to finally be on feeds, they will probably give her a special formula. I don't know if that means always or just for a time. As each day goes on, it becomes more and more clear to me that I most likely won't nurse this baby and it breaks my heart but as long as she's here I guess it doesnt really matter in the big picture.
Grace is also scheduled to go to the OR on Friday to finally put her intestines back in and they will put a gortex patch in to close her. So she will not have a silo anymore but instead will have a patch on her stomach. It will not be skin colored. She has to have this because, when they did her repair before they didn't want to squeeze everything in and then have her swell up alot on ECMO and have issues. So they left a little of her intestines in a silo. they had planned on cinching it down a little each day until it was all the way in and then close her up. Well she started having so many other issues taht her silo became the least of her worries. Since her skin has been stretched open for a month and the silo popped out numerous times and had to be sutured back in, they just don't think he skin will be able to stretch enough to close.
I was so happy when they were able to do her repair without a patch because it can cause all sorts of problems later on down the road. This gortex pactch will come with the same problems and that's upsetting to me.
Overall she is doing alot better than a week ago and considering all the things she has been through she is doing very well.
Please pray that her pulmonary hypertension can be brought under control. She is on Flolan for it, and they have just upped her limit on that, she should reach her limit by Thursday and they will repeat her ECHO(echocardiogram) then, please pray it shows improvement. Right now she does have a very strong healthy heart but that could change if her pphn does not improve.
Pray that her repair goes smoothly. I hate sending her to the OR.
Pray that she does not have a chylothorax, though it can be fixed it just adds more time and steps to getting her home. 
Thank you all so much for your thoughts and prayers, they are very much appreciated even if they are not immediately (or at all) responded to.


  1. Are you watching Clara's blog? Her family is traveling a lot of the same roads as you are including chyolthorax.


  2. Lisa, yes I have been following her for a week or so. I cannont believe the similarities. I think Grace and Clara must have some way of communicating lol.

  3. Andrew had chylothorax as well - it did prolong his journey in the hospital but it did clear up after a couple of weeks and an addtional IV med. Don't necessarily give up hope on breastfeeding Grace - Andrew went home with a NG tube and not taking bottles very well, but after less than a month at home, we pulled the tube and he was 100% breastfed for the next year plus some! I had not even tried to breastfeed him while he was still in the hospital and like you, I thought I would never be able to breast feed him, but it ended up working out. I tell you this just so you don't give up hope - it can work!

    Still praying for you all and Grace - glad things seem to be improving! I will be praying for a successful surgery as well!

    Mom to Andrew
    CDH/ECMO Survivor

  4. Clara's Dad here. It's crazy how much these two girls want to copy one another. According to Clara's docs/nurses, the chylothorax is a manageable annoyance, but as long as she's got a chest tube in, it's not life-threatening. But you're right, it does slow down the process a bit. She'll only have to go on the formula until the Chylo gets better, and then she can go back to breast milk. Also, one of our nurses told us that the medication that they give for chylo has some pretty mean side effects, and that we'd be much better off waiting to let it resolve itself (one person's opinion, but thought we'd pass it along).

    Flolan is your friend! Clara's PPHN improved dramatically when they put her on Flolan. We've finally gotten her weaned off it now that she's on Sildenafil, but it worked wonders when she needed it.

    Praying for your guys and rooting for Gorgeous Grace!


  5. love love love you sweet baby grace! praying hard and i saw a pick of a little girl in a pretty pink dress with blonde curls and it made me think of you and someday looking forward to doing bubbles in your backyard with your brothers! hugs to your mom and dad and brothers too!

    xoxo, aunt 'nette

  6. Miranda and Adam I can't believe someone passed your blog along to me. I am the nurse who helped delivered (and apparently made my way into your blog) beautiful baby Grace :-) We have been asking and asking about you guys and have called U of M quite a bit to bug the nurses there about how Grace is doing. We have gotten very little information on you guys other than she was stable on ECMO and that was a few weeks ago. I am SO glad to hear that Grace is doing as well as to be expected and have been praying for her and you both. I have been reading from the beginning and if there is anything I can do to help don't hesitate to let me know. I have 2 boys so I am sure they would love to play with your boys if you are still looking for some help with them. Feel free to email me and I can give you my phone number! I can't tell you how happy I am to hear from you guys and how Grace is doing. She is in my mind every day! Lots of prayers to you and your family!
    Ericka RN (Flower LDRP)