Monday, June 25, 2012

The roller coaster continues.

Alright, friends.  We need lots of prayers that Bonnie will start making some major progress in the next day or so.  I'm becoming a fan of bullet points, so here you go:
  • Her right lung (the good one) has been whited out on x-ray for the past two days, and they're wanting that to clear up before they try to wean down her ECMO settings.  Please pray that all the interventions they're doing to help with this (working with the respiratory therapist, adjusting ventilator settings, etc) start working *soon*.
  • Bonnie had an echo today that showed that her ductus (which I attempted to explain in a previous post) is still open.  So far this is a good thing.  Please pray that it stays open as long as it needs to--to help with pulmonary hypertension.
  • And speaking of pulmonary hypertension...her echo today showed that it hasn't changed much since the last echo.  I.e., she's still got it and it needs to go away.
  • Her surgeon popped in today and, among other things, made the following comment, "I think she's shown that her pulmonary hypoplasia [underdevelopment of her lungs] is worse than we thought initially."  Please pray that Bonnie proves him wrong.  And keep your negative comments to yourself, Mr. Surgeon Guy.
  • I had an interesting discussion with Bonnie's neonatologist (Dr. Jenkins, who we love to pieces, and who is brilliant) today about her issues with low blood pressure.  One of my personal theories is that when the heater on her bed kicks on, her blood pressure goes down.  I've seen it happen, and it makes sense from a vasodilation standpoint (i.e. the heat makes her peripheral blood vessels open up more, which causes a drop in her BP).  We were talking about how I myself tend to drop my blood pressure if I get too hot (or hungry, dehydrated, or tired), and Dr. Jenkins thought Bonnie's BP issues might *possibly* be similar.  Anyway, the whole thing has got the doctors stumped, so please pray for wisdom and insight into what's causing her low blood pressure and how best to manage it.
This was a rough day for me, y'all.  I'm so ready for her to start making progress toward coming off ECMO, and for the past three days, there has been no progress at all.  It wouldn't be so bad if she hadn't already been on ECMO for 17ish days.  She's getting to the point now, though, that her doctors are getting antsy to take her off due to the risks of being on for so long.  Jonathan has been reminding me that we expected her circuit change to be a setback for her, and indeed it has been.  On the positive side, Dr. Jenkins has said more than once, "I think she can do this."  Praying that she's right.  Also on the positive side, our little gal was awake and alert for a good chunk of our time at the hospital today.  We had lots of chats with her about how she needs to start behaving so we can bring her home and buy her a pony and whatever the heck else her little heart might desire.


  1. I'm with Dr. Jenkins: I think she can do this. Nay, I *KNOW* she can do this. Continuing to pray and believe.

  2. Praying in Texas and following you through baby Jude. Bonnie and our Lord will prove them wrong.

  3. Praying for God's healing hand to touch Bonnie and for God's wisdom to be upon Bonnie's medical staff...And for God's grace to be upon Bonnie's parents and loved ones!!

  4. Praying for you and Bonnie, your family, and the staff. Tell Bonnie you already have a dog as big as a pony waiting for her in the backyard. Sending love as well as prayers your way.

  5. Many many prayers as always!! She has got this! Much love and spirit sprinkles :-)

  6. Positive thoughts and prayers your way. I am sure she will do it. I am currently expecting a boy with CDH, due in August and I am following your blog and rooting for you little girl. She is a fighter. Hang in there. I blog at