Tuesday, August 9, 2011

Nothing too different going on with Grace. She had a doppler of her leg the other day to check on the clot that she developed when she had the femerol line placed back in May. Because of that clot she gets 2 shots a day of Lovenox, poor girl. The doppler showed that the clot was not there! But then I guess her last ECHO showed a possible clot at the ECMO site so they did an arterial study today, hopefully that comes back with no clot at the ECMO site and we can disconinue the lovenox. She looks like a little pin cushion with dots everywhere and brusises from them. If the DVT is gone then I'm taking credit because I've given her a few of the shots, so I must have the touch. Ha! I will be so glad though if she can stop lovenox, it's torture!
She has an ECHO today, PLEASE pray that there is SOME improvement to the PPHN. I told Grace that her next surprise needs to be to get rid of that. We'll see if she listens:) They went up on her Flolan this past week so maybe it helped. They also went down on her Sildenafil and she's been tolerating the decreased dose. So now she is on 4 different drugs for her PPHN, I really hope there is an improvement.
Grace has been weaned completely off of all sedatives and narcotics and now just has Ativan PRN's, should she need them. She has been getting about one dose per day.
Grace just can't catch a break because in addtion to everything else, she is now teething. She is 4.5 months old now, so she is following in the traditional timeframe for our kids to teethe. I wish she wasnt! She is bothered by them very much and though it's silly, its really sad to me that she will go home with teeth. She smiles but we've never gotten a huge toothless grin out of her and that makes me sad too.
They've increased her calories again so now she is on 38 calorie breastmilk because they don't think she is growing fast enough. she is almost 13 pounds which is close to double her birthweight which I think is fine. I didn't think the calories should have been increased and when I called this morning they had decreased them back to 26 cal because she wasn't tolerating the increase.
Grace is so funny, she has a few mirrors in her bed and sometimes when she gets to crying, her reflection will suddenly catch her eye and she will look at the mirror like "wow that baby just wont stop! what's your problem?!" and then stop crying and just stare at herself. Adam said yesterday taht was reaching out and touching her reflection. She LOVES to look at herself. And rightly so, she is the most beautiful girl in the world after all!
Thank you for all the kind words and prayers coming from all over. Special thanks to the Dvorak family for the surprise I got in the mail. That was way too kind of you and made me stop whatr I was doing and have a cry! please continue to pray for Grace to get better and come home. Please also pray for the families of Maddie Spence and Mattiaus, CDH babies who grew thier wings over the weekend. Also for the 4 other families in the NICU with CDH babies. CDH is just such and awful and heartbreaking thing to live through.


  1. I love the family picture!

  2. Great family picture! Thinking of Grace everyday and praying she comes home to you all very soon!

    Mom to Andrew - CDH/ECMO Survivor

  3. While I know Grace still has a number of hurdles to overcome before going home today's post made me tear up with joy. I absolutely love the family photo.

    Poor little baby, teething already.

    Renee B

  4. Beautiful Pic of all of you together! Im just sitting here thinking about you & it brings tears to my eyes. Remember and be thankful for the time you had with "your little girl" :) 2 yrs ago I thought my world was over but god is getting me threw and making it easier with time...BIG HUGS from Dayton, Ohio >:D<