Thursday, September 20, 2012

Update from the home front.

Many apologies for not updating sooner to let you all know that we did indeed make it home (two weeks ago!?).  It is seriously crazy with two kids at home. I don't know how people do it.  Anyway.  Bonnie got discharged from the hospital two weeks ago today (still with the Thursday theme), just one day shy of her 3 month birthday.  I'd love to tell you that it was a great and magical day, and it was, but it was also really stressful and overwhelming--we had been living away from home for 3 months, so in addition to bringing a new baby home, we were essentially moving across the state.  It was a wild day.

So. Since we've been home, we've been getting to know Bonnie and her schedule.  Turns out she's a really good sleeper.  I have to get up 4-6 times a night (to turn her feeding pump on and then off an hour later, every three hours), but she sleeps pretty well through the night.

Except when her belly hurts.  Which seems to be quite a bit.  On her third day home I started keeping a log of her spitting up/vomiting and how it related to her feeding times, calorie content of her formula, etc. (I never claimed I wasn't a nerd.) After a couple days of feeling like we were torturing her every time we started one of her feedings (via NG tube), Jonathan and I pretty well lost our minds and called the surgeon to ask for an earlier appointment.  The original plan had been to work on feeding by mouth for the month of September, and then get a G tube if she couldn't kick the NG habit by then.  Well.  She's throwing up so much, and so gaggy and refluxy in general, that we're hardly able to work on oral feeding.  She's pretty unlikely to make her deadline, so we want to go ahead and get the surgery over with.

We bumped up her consult with the surgeon and had that appointment today.  In addition to talking about getting a G tube, we discussed an anti-reflux procedure called a Nissen fundoplication.  Reflux is annoying at best, but for Bonnie, it could be really dangerous.  With her paralyzed vocal cord (which is probably-but-possibly-not mostly better since her cry is decently loud), she's more likely to aspirate formula into her lungs, which could cause pneumonia.  Since her lungs aren't the best, pneumonia could easily land her in the hospital.  Also, since she's throwing up so much, she's not getting all the calories she needs.  For a girl who has spent a good chunk of her life not gaining weight, she has some catching up to do and needs all the calories she can get.  (The good news is that she's up a full pound since she was discharged two weeks ago. Yay Bonnie!)

For anyone interested, she's already on a couple reflux medications.  She's been on Prilosec for a few weeks now, which helps with her stomach pH (i.e. acidity).  I feel like the Prilosec is doing what it's supposed to do, so when she refluxes it doesn't *hurt*.  But she still feels it come up and it bothers her.  Once we got home, her pediatrician decided to try her on Reglan, which helps the stomach empty faster so that there's less to throw up.  That actually seemed to help for about two days, but then the throwing up came back in full force. Sad.

So.  Surgery is scheduled for October 9th.  She will for sure get a G tube, but the Nissen is questionable.  The surgeon feels that it might be too difficult to do since Bonnie is still so little.  He said ideally, she'd be about 20+ pounds, and she's currently not quite 11 pounds.  Please pray that the surgery will go exactly as God would have it.  There are some potential complications to the Nissen which make me nervous, but potential complications of the constant throwing up aren't so great either.

Here are some pictures of Bonnie's last day in the NICU, as well as a few from our first days at home.

Our favorite neonatologist (Dr. Jenkins!).  She took care of Bonnie while she was on ECMO, and she was back on service for Bonnie's last two weeks.

Bonnie and Karlayne, one of her wonderful primary nurses. We love her! 

Bonnie and Joan--ECMO nurse extraordinaire.  We love her too!

Bonnie and Courtenay, another one of her awesome primaries.
Not so sure about her carseat.

Loading her up in the car.  As soon as we took her outside (for the first time ever in her life) she fell asleep.  We were holding up traffic here getting this shot, but whatever.  Your baby only comes home from the NICU once.

Stopped at a gas station on the way home and took a little break from the carseat.

Henry is the sweetest big brother.  We've had a lot of this sort of thing since we got home.  He's leaning in to kiss her.

At home in her swing.

Big brother Henry on game day.  Seriously, could he be any cuter??


  1. So happy to see the wonderful pictures. And good to see an update as well. Praying that all goes well with surgery. You have a beautiful family!

  2. So happy to see your family together in these pictures! Praying that surgery goes off without complications.

  3. YAY YAY YAY YAY YAY! I am so happy that you are home. Home. Is. HARD. So many people told me, "Oh, once you're home, everything will be easy peasy!" Big fat lies. Hang in there, mama! Proud of that little booger and proud of you. :-)

  4. Yes, what Abby said. Home is AWESOME and it is also overwhelming and scary and hard. Hope you are getting enough sleep (haha. I can't believe I even wrote that silly thing!) and that Bonnie is growing. The worries and hard stuff gets easier as you go. Hang in, Leslie and fam.

    Mama to Samuel

  5. SO happy to see that Bonnie is home :)

  6. So happy to hear that she's home!! Can you set the pump to intermittent feeds?? Stormy has an intralite infinity pump, and we set it to run every 3 hours, and get whatever dose and rate she needs it at, but we keep her milk on an ice pack to keep it cold. If we have to have a feeding tube, and feeds, I am thankful for a baby that sleeps through the night and doesn't wake up hungry(Gotta look at the bright side!).

    She is beautiful!!

    P.S. I second what Abby said!! Adjusting to home life was HARD! The nurse button becomes invisible and the mom button light NEVER goes off! However, it does get easier... thank goodness!!