Monday, April 25, 2011

pulmonary hypertension

Grace had another ECHO today, the hope was to do the echo and then take her off nitric to see what the echo showeed with no nitric. They never even stopped the nitric because her pulmonary hypertension was not improved enough for them to try. Pulmonary hypertension is something all cdh babies deal with in some form. graces has always been profound and still is. it is the biggest hurdle that she needs to get over. please pray that the pphn would start to lessen and finally resolve.


  1. I've just read your blog for the first time and can't believe how similar Grace's journey has been to Clara's. How amazing that these two little girls are fighting the same fight at the same time and both defying all the odds. We got our diagnosis for Clara at 18 weeks... I cannot imagine your pain of not knowing in advance. One of the other families in our "pod" of the NICU has two older children and I was just saying today that I don't know how these families with other children balance that with being with a sick child. We are thinking of you and praying with you. Clara got her Nitric off today; we'll be praying that Grace's PPHN improves for her to get hers off soon too. Patience is so difficult. It's been especially hard for me as I look at things hour to hour. I do better when I step back and look at bigger chunks of time. Like, "One week ago we had just de-cannulated! Wow, we've come a long way in a week!" If you need someone to vent to or talk to that's going through the same thing, even many states away, feel free to email: chrissyhardy(at)gmail(dot)com.

    Hang in there! We'll be remembering you and Grace in our prayers, too!

  2. Praying for better stats and improvement each day.
    LCDH Ramsey , survivor

  3. Grace looks so sweet in her Easter outfit. I have passed along your prayer requests to my bible study friends. We continue to pray for your baby and your family. God Bless you and may Grace feel Christ's resurrection power today and in the days to come! Peace in Christ-Barb