Thursday, August 4, 2011

Some progress of sorts.

The Grace I saw at the begining of the week, was in my opinion Grace reacting to Sildenafil (Viagra). Her symptoms though they were also those of an infection, were too coincidental with the increased viagra dose and the reaction she had before. In an attempt to curb whatever it was, she was started on IV Vancomyacin and Zostyn, two very strong broad spectrum antibiotics. They did do cultures on everything and of course nothing was growing. The concern with the infection though is, could it be her patch that was used to close her belly? (Not her diaphragm, that was closed without a patch but her abdomen  needed a patch from having a silo for so long.) Could that be why her stomach looked so awful? If her patch was infected the concern would be that it could infect the tubing in her belly connected toher shunt and then the shunt is infected as well. Not good. So they stopped putting bacitracin on her belly to let it dry out and they started her on the antibiotics. She hasnt had a fever yet. BUT the other thing they did was cut her Viagra dose in half to where it was a week ago before all of this started happenieng and she hasnt had a fever or irritability since. So which was it? Viagra? Infection? Still don't know! My instinct says viagra even though I want so so so much for her to be able to use it. So when I called today I was told they were going up on her Flolan to try to get her off the Nitric. Im not sure when she is supposed to get another ECHO but I'd like for it to be soon.
She has been having some pretty ok days. She gets fussy like a baby will but whether it was the antibiotics or the viagra she is feeling better. Her heartrate has been down closer to her baseline, she is still breathing heavier and  her sats are up but she is also on 6 literrs of oxygen.
She now LOVES to drink breastmilk. She doesnt take a bottle and she doesnt nurse but if you put in a syringe and drop it in her mouth she LOVES it. It's very cute. She had some physical therapy yesterday which she hates. Dan tries to butter her up before working with her but she doesnt buy into it. She knows who he is and she's not a fan. She has alot of work to do to get to where she should be. Some 4 month olds are crawling and she cannot even lift her chest up when prone. She will get there but it's alot of hard work for her. I cant imagine any of it feels good. She is such a tough little girl and I am so blessed to have her and so thankful that she is here with us.
Please continue to pray for baby Aiden as well, CDH and PPHN are giving him a hard time right now.
The most beautiful girl in the world

Ready for bed with her lovies

Beautiful girl

Her Belly. poor girl


  1. Still praying for beautiful baby Grace!!


  2. Sending prayers & good thoughts your way. Grace is so beautiful! And strong!!

    By the way my little guy, 11 months corrected 10 months or less, is only finally sitting up now almost unassisted, but tummy time = throw up time, so I doubt if he will ever even crawl. But our little ones will get there in their own time.

    Take care! Angela, CDH momma to Mattiaus

  3. Leslie, Greg, Cole and Aiden (CDH)August 05, 2011 5:44 PM

    Thank you so much for your kind words about our little fighter, Aiden James. He has sure thrown us some hurdles and I hope now he will settle down. Thank you for your encouraging text messages when I needed it the most. It is so nice walking into the NICU and seeing someone you feel a connection with and know I can talk to about CDH issues. We pray for Grace daily and hope she can overcome her hurdles as well. Thanks again:)

  4. Miranda I'm so very sorry to hear about the hard times Grace has been having & it just brings me to tears reading your 1st august post. I cannot imagine how it feels for you. You are such a great mother & you are soooo very strong & I hope things will get easier soon. Grace is so beautiful & God has a big plan for her. I'm praying so hard for you & Grace & for Adam & your boys.