Another Surgery, Another Success

Maybe I'm being a little too ambitious by calling her surgery a "success" at this point, but all signs are looking positive, with no noticeable setbacks.  We're now two days post-surgery and she's doing great.

As it's been in the past, it was tough to let the doctors take her out of our arms.  She is, and always has been, our smallest baby.  For someone who's only been breathing air for eight months, she's incredibly strong and calm when we take her to the hospital.  You may be saying, "She's too young to really know where she is."  Well, I disagree.  I think she knows exactly where she is, but she does her best to keep her parents calm and in check.  In fact, I think the only time she started crying was right around feeding time, 7:00am, but it also could've been because we woke her up before 5:00am!  Meg has the girls on a schedule and they know when the food train is supposed to arrive.  Obviously, we couldn't feed her anything since she was about to go under anesthesia, but of course, in true Izzy fashion, she got over it with some kisses and cuddles from mom and dad.

As content as can be


Meg, giving some pre-surgery love


Lights!!!


More love and hand-holding


Izzy and Sophie both love the lady on the Starbucks cups


Nothing better than a trusty Wubbanub


A few moments of frustration


Yes, those are my initials on her belly, but I didn't write them


It's something that one of the pre-op folks do to make sure the surgeon remembers the part of the body on which to operate


The surgery began right on time.  We distracted ourselves from our worrying by playing Swordigo and Reckless Racing 2 on our iPads.   Time seemed to fly by and it didn't hurt that Dr. Liu's nurse, Chris, came out frequently to give us updates.  The surgery took a little more time than planned as Dr. Liu had to cut through some of the adhesions that formed from her previous abdominal surgeries, but nothing is ever too tough for him.  Overall, I think the surgery only took about an hour and 15 minutes.

Our brave girl


After sitting with her in the post-op waiting/recovery area, they brought us up to the PICU--Meg and Izzy's home for the next 24 hours.  They controlled her pain with Tylenol and morphine, when necessary.  One of our major concerns with this procedure was how long she was going to be intubated.  I don't know if they set any records with her, but I think the breathing tube came out almost immediately after the surgery was over--another positive for us!  In fact, they've weened her oxygen back down to what it was before the surgery.  So, it doesn't appear that we'll have any additional hurdles to face with her breathing because of the procedure, which is a HUGE positive!

Getting some well-deserved sleep


Mom, checking out her baby


In case ya don't know, now ya know


Rare photo of dad in front of the camera with one of his daughters.


As of now, she's supposed to come home tomorrow, Sunday, barring any setbacks.  The docs/nurses began her regimen of Pedialyte on Thursday afternoon, began bolus feeds on Friday, and began PO (oral) feeds today.  They're going to continue to increase the volume throughout the day.  If she can show them that she can handle the increased volume, then it looks like we'll have all three girls back together again before the weekend's over!

In case you're wondering, Sophie, Maddy, and I are doing fine here.  We're missing the rest of our family, but we're surviving.  No one's starving, everyone's had baths, and we even got out of the house so dad (me) could try on some golf shoes.  It's that season ya know ;-)

Please keep us all in your prayers.  You have no idea how much they've meant to us this past year.  Where so many things could have gone wrong, they didn't.  There's no way to ever truly know why we've been so fortunate, but I think I have a good guess.

Conquering Cold Feet

We're up early this morning.  Not because the sun is creeping through the windows or because the birds happen to be chirping a little closer to our quiet home, but because today, Isabelle is going in for surgery and needs to be at Comer Children's Hospital by 6:00am.  By the time she's done, she'll have one less tube on her face, a new tube on her belly, and a device at the top of her stomach that will help control her GERD.  She'll be the proud new owner of a G tube and a Nissen.

I'd be lying if I said that we weren't having cold feet about the surgery, but I think we know in our hearts that it's the right next step for her.  We've written extensively on how we got to this point and what eventually led us to this decision, but if you're just reading this blog for the first time and are looking for the short story, well here it is.

 Isabelle was born with several intestinal perforations.  She had surgery within the first couple of weeks of her life that created a situation which required her to be intubated for lengthy periods of time and kept her from feeding orally for quite some time.  Also, she was born at 1 lb 7 oz and her lower esophageal sphincter (LES) had almost no tone, meaning it wasn't keeping the food down that we were feeding her.  We believe that most of this was caused by prematurity and IUGR due to Twin-to-Twin Transfusion Syndrome.

As she healed from the surgery, she was eventually allowed to try to eat by mouth again, but demonstrated some oral aversion and seemed very uncoordinated with her sucking, swallowing, and breathing.  She made some improvements while still in the NICU and eventually came home without oxygen, but with an NG tube.  She really seemed to struggle with her oral feedings, even though we were receiving input from multiple doctors and therapists on how to potentially treat her eating issues.

Eventually, we came to the conclusion that she needed to be back on oxygen because she was, in essence, trying to run a marathon while eating.  She had become so used to it that it didn't bother her, but did affect her eating. 

So, for the last couple of months, she's had both the NG tube and the nasal cannula on her face 24 hours a day. On the positive side, she's been gaining weight, good weight.  On the negative side, we haven't really been able to increase her daily volume in quite some time, she regularly spits her food up beyond what you would be used to seeing, her reflux is still causing her pain, she spends more than half her day upright either sitting in her bouncy chair or the sitting still in the swing.  The latter has resulted in some physical delays that keep her from catching up to her sisters.  Essentially, we feel like it's starting to affect her quality of life.  If she has it her way, she'll be on the move soon and the last thing we want is for her to be tied down by tubes.

The Nissen will be placed near the LES and will let food down, but not let it back up.  We still need a way to feed her when she can't finish her bottle by mouth, as well as the stomach will need a way to vent its gas when the Nissen won't let it come back out.  This is where the G tube comes in.  So, they kind of go hand-in-hand.  Not everyone who gets a G tube needs a Nissen, but logically it makes sense that most who need the Nissen will need a G tube.

I promised the short version, so I'll leave it there.

The surgery isn't supposed to take very long and will be performed by the same surgeon (who we really like) who did her previous bowel surgeries--Dr. Liu.  They told us to expect her to stay in the hospital for three to five days.  Meg will stay for the weekdays and then I'll swap with her on the weekends so she can see the other girls.

I know that as her parents, we'll never forget these experiences and the sometimes heart-wrenching decisions that accompany them.  It's my hope that she grows up not remembering these early painful days and that one day way off in the future, I'll be able to explain to her where her scars came from because she really doesn't remember herself.

Please keep us in your prayers today.  We're not expecting anything to go wrong, but it's another surgery and there's always risk, especially when you go under anesthesia. 

I'll try to write an update post when we know how the surgery went.