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.

Home Before Christmas!...hopefully (with Meghan)

"Thank you!" to all of you who reached out after the last post.  We've had lots of offers to help and calls and messages from family and friends with words of support and wisdom. Even if we don't get the chance to return every communication, please know we truly appreciate all of it. It's the highlight of our day along with baby smiles :)

Shelli, Meg will definitely be calling you to take you up on your offer! Thank you for your call!

Yesterday, we went to the NICU for a family conference. The docs, nurses, case manager, social worker, and speech therapist all met with us for a two-hour conversation about getting Isabelle home. The end is near, a situation I have two very strong conflicting feelings about: Yeah!!! and Oh s#%t! Excitement and pure fear. But, ready or not here she comes!

I'll try my best to give you most of the updates they gave us. The long and short of it though is she is going to come home with a lot of special care needs so, things are going to get a little crazier very soon.

There are many different "checks" Izzy needs on her NICU report card in order to graduate, but the most important issue is related to feeding.  Here are the questions that still need answering.

Q. How much is enough?

A. Now that she's off TPN, Izzy needs to get her volume of breast milk and caloric intake up to a point at which she'll gain weight. There was some question about whether she could tolerate fortification, but she is now tolerating neocate, which is a pre-digested, prescription-only formula. Typical breast milk is 20 cal. They will fortify it by adding half a tsp of either 22, 24, or 27 calorie neocate to the breast milk for each feeding. The more extra calories she has, the less volume of breast milk she'll need to eat each feeding to gain weight. The docs feel they'll need about 10-14 days to figure out how much high-calorie fortifier she'll need with the volume of breast milk she'll tolerate. Once they figure out the best balance for her, she'll need to demonstrate consistent weight gain for a few days before they're ready to send her home.


Q. Why is she having so much difficulty?

A. The "Neos" (neonatologists) want to rule everything out to be sure of WHY Izzy's having so much trouble with the physical act of eating. It could be she's orally averted, which they told us before, but it could also be some other things. First, the swallow test showed good news and bad news. She is not aspirating, which is wonderful because if she was, we would need to stop oral feedings altogether until speech cleared us for eating. She has made so much progress with the number of bottle feedings in a day and the amount she'll take each time. It seems like the exercises the speech therapist gave us are really making a difference. If she had to stop now, she could have major setbacks again. This test also showed that once the food passes the larynx, it is going into her voice box a bit. Then she coughs and corrects it before it gets into the trachea.

We were told this could be due to prematurity and she's just averted, an anatomy issue which would need lots of follow up with the ENT, or a neurological issue (worst case scenario). Today the ENT did a bronchial scope. It showed completely normal anatomy. One issue down and one less doc to follow up with post NICU! Woohoo! The next step is an MRI. Hopefully it will come back normal, but even if it does, there could still be neuro issues that won't show for sure until down the road. Whether it's neuro or aversion due to prematurity, there's a chance she'll never get over it. Fortunately, she has made so much progress in the weeks post-surgery that Dr. Covert expects her to recover completely over time.

Either way, she'll be coming home with an NG tube. For each feeding, we'll do positive stimulation exercises, try bottle feeding until she gives cues she needs to stop, then NG the rest. Thankfully, she'll be on continuous feeds for nine hours at night so nighttime feedings will just consist of adding more food to the pump every 4 hours and letting her sleep. Maybe she'll sleep through the night from day numero uno! Another positive about this is we'll receive much more home care nursing hours with the NG tube in the scenario.

Over the next 12 days we'll need lots of training to make sure we are confident feeding her and changing the NG tube, but her ETA is December 19th-December 21st. I can't believe our NICU portion of this journey is almost at its conclusion. Each new phase has such different challenges. Gone will be the challenge of fitting in NICU visits among breast feeding and pumping. Now, the biggest challenge begins: learning to take care of three babies at once while having one with special needs eating only pumped breast milk. What did Meg get herself into with this breast feeding stuff?!

Somehow, we'll figure it out. I'm sure our posts will get more and more interesting in the near future. For now, I'll leave you with a yucky image that would only happen to parents of infants. Maddy hadn't pooped in three days and she was very fussy.  So, after failed attempts at stimulation using Vaseline and a Q-tip we turned to the good ol' glycerine suppository. After lots of "action down below," we risked changing her. As you can see, she was not near being done and Meg had to scramble to get the new diaper on before we had more casualties than just her hand!

For those that don't know, Meg has freakishly long fingers on her right hand and mini-fingers on her left hand! 

(not really, I only had an ultra-wide angle lens handy to capture this moment :)