Thursday, July 5, 2012

"I think this is our window."

I had seriously the best night of sleep ever last night, which is good because I was beyond exhausted.  I went to bed about two hours earlier than usual, and Henry cooperated by not getting up until 7:00 this morning.  Slept like a rock.  This was only possible because I had no idea what was coming our way today.

On our way out the door to head to the hospital this morning, I looked at my phone and noticed I had a message.  Turns out it was from *the surgeon*.  It's usually not great news when the hospital gives you a call, so my heart kind of stopped for a minute.  He said he had been by to see Bonnie this morning and she had had a great night. Looked great, good oxygen levels, even weaned down to the conventional ventilator.  What a nice little update, thank you.  Then the words that *really* made my heart stop. "I think this is our window."  As in, time to do the repair surgery.  They tend to talk about major events (coming off ECMO being another example) in terms of when would be a good window of time to do it.  Basically all the stars need to align.  Sometimes it's not easy to see when a window is available, but if you miss it, usually another will come around. Eventually.  (In Bonnie's case, there's always the chance that if you wait too long, she'll pull some crazy stunt--like getting pneumonia--that will make that window close for quite awhile.)

Anyway.  Today, the stars were aligned.  She had started looking better yesterday as far as puffiness, and today she looked downright great.  Eyes open and looking around.  Loved it.  It was kind of a funny vibe when we got to the hospital.  From the nurses, to the respiratory therapists, to the doctors, everybody was in  shocked-but-happy disbelief.  We got a lot of "Whoa, bet y'all weren't expecting *this* today, huh?".  Indeed.  But after a thorough discussion with the neonatologist, it was apparent that there wasn't a good reason *not* to do the surgery today.

They got Bonnie all primed and ready to go, and we walked down to the operating room with her.  Gave her kisses and told the medical folk that they better take good care of my baby or else.  Jonathan and I were perhaps surprisingly calm while we waited.  Had lunch, did a little knitting (me, not Jonathan), and fielded hourly calls from the OR nurse telling us that all was going well.  A mere three hours after we dropped Bonnie off at the OR, Jonathan and I were talking to the surgeon about how well her surgery had gone.  One big big praise is that she had enough diaphragm for him to close the hernia without having to use a patch. (A patch isn't ideal because it doesn't grow with the baby and increases the risk of reherniation down the road.) And of course, many prayers of thanksgiving that Bonnie made it through the surgery itself. 

Not that it matters much at this point, but today we also got an answer to the question we'd been asking since February when Bonnie was diagnosed with CDH.  What organs are up in the chest?  We were told initially that it looked like just stomach and bowel.  Then, around 32 weeks, it looked like part of her liver was up there also.  Anyway, the verdict is that just about everything that could be up was up.  Stomach, bowel, spleen, and some liver.

We are so so thankful that the surgery went well.  To keep everybody on their toes, though, Bonnie had to throw in some excitement at the end of the day.  Short version is that they unhooked her dialysis setup for surgery, and when they tried to get it going again, the catheters wouldn't flush.  There was some debate as to whether they were kinked off because of the position Bonnie was in or if there was a blood clot keeping things from flowing.  They ended up using something called TPA (can't remember what it stands for) that breaks up clots, and at last update, that seems to have worked.  Still need to hook her back up to the machine, though.  Drama.

Okay, so Bonnie has made it through two huge hurdles in her four weeks of life.  She made it off ECMO (and believe me, there were days when I wasn't sure that would happen), and now she's made it through her hernia repair.  She still has a long way to go before we can bring her home, though.  Among the things on Bonnie's to-do list are 1.) learn to breathe without a ventilator  2.) start peeing  3.) learn to eat  4.) get off the narcotics.  She also has to make it through the next few days post-op.  No reason to believe she won't do well, but we've been reminded multiple times by Dr. Surgeon Guy that the surgery will make her sicker initially.

Thank you everybody for your prayers and encouragement for Bonnie Bee.  Please continue to pray for her kidneys to get going, as well as for her healing after surgery.


  1. As I read this the tears are flowing, happy tears. And I just keep thinking of how I talked with Miss Anne today and how happy she will be when she reads this as well. You go Bonnie!!!!

  2. Praise God! I'm so happy! I'm smiling ear to ear for you guys, especially Little Miss Bonnie! I can't believe she had all that "stuff" up there but still didn't need a patch. That's amazing! Still praying for her little kidneys to get on the band wagon. :)


  3. Oh boy!!! When I saw she'd gone to surgery yesterday I knew it either meant she'd done some drastic improving or something had gone horribly wrong and it was a last ditch effort. I can't tell you how excited and relieved I am that it was the former!! I was totally not expecting surgery this week. Leave it to Bonnie to keep us on our toes. :) Delighted to have another important step behind us. On to peeing, breathing, weaning and eating! Easy does it, girl.

    love and prayers...

  4. Many, many prayers today for a stabile day for your brilliant little fighter!!!!! I remember such a feeling of relief when the surgery was done because now when she gets better, it is for good!!!!
    Mom to Dakota 12-25-2008
    RCDH/premie survivor

  5. Yaaaaay for little Bonnies. Two hurdles done and rest will go smoothly too. Good luck. Rooting for you little girl.


  6. Wonderful news that the repair surgery is done! Bonnie is kicking it! Praying for ongoing healing.
    Mama to Samuel, lcdh, Feb1/11