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.

Medical Critic Working Overtime (by Meghan)

There are food critics and movie critics. Sometimes I think Izzy's teaching us to be medical field critics. There was a time in my life when I knew absolutely nothing about the medical field. Those days are long gone as terms like tachypnic, diaphoretic, PO, and FIO2 have become part of my daily conversations. There's a nurse-in-training working with our nurse here who came in to get vitals and I showed her how to use the monitor to start the blood pressure cuff. I really thought as a stay at home mom I wouldn't feel intellectual stimulation and the only things I'd be able to talk about would be poop, spit-up, breast feeding, and sleep schedules. Thanks to Izzy, my life will never be that dull. :)

Now, for the info you've been waiting for. The 10 days Izzy was at home after being released from Edward were awesome. When she first came home she wasn't tolerating her full volume and she also needed a little extra oxygen. Within the fist week we weaned her back to her baseline of 0.2 liters and she was doing great. We were able to increase her volume with each feeding and she was eating everything by mouth during the day. This was new for us. We had at least four days where there was nothing left at the end of her feedings to put in through the NG tube. She was taking her full bottle by mouth and looking good doing it. She was coordinating her sucking, swallowing, and breathing beautifully. The speech and physical therapists were both very impressed. So, as you know we attempted to let her keep her NG tube out.

Unfortunately, on Tuesday, she gradually went downhill. Feedings started becoming longer and longer and she looked less and less coordinated. By her first nighttime feeding she wasn't able to eat more than an ounce. I noticed she was breathing very fast. Her respirations were at 80 breaths per minute, which is much higher than the average 40-60 breaths per minute she should be breathing. In the NICU, the nurses won't feed babies unless they're under 60 because there is fear of aspiration. They told us it's like trying to chug a bunch of water down after you're exhausted from running a race and breathing very fast. Any of us would throw up with that scenario and that's what happens to Izzy, too.

Because it was such a drastic change, we reinserted the NG tube and came to see Dr. Andrews in the morning. She decided to keep Izzy overnight for observation. After they increased her oxygen, she started finishing her bottles again and looking much better. Her work of breathing is better and she's smiling, which is always great to see.

So far we give our new hospital and medical team a 5 out of 5 star rating. The nurses, doctors, residents, check-in staff, and even security guards have all been wonderful. The best part about being here is there is a huge team of doctors looking at her an collaborating. It's not just a world renowned pulmonologist, but also all of her residents. The pulmonology team is working with Dr. Andrews (the neonatologist). There is also a speech therapist and a dietician involved. They're all collaborating to make the best plan for Izzy.



Here's what I know so far. The dietician thinks she should be on 120 cal/kilo diet instead of 108 cal/kilo so she recommended increasing her volume. She said we really need to grow her lungs and she'll need the higher calories/day in order to do that. She said Izzy should get chubby before she gets long so we should expect that and not worry. (Jeremy I'm talking to you who thinks Sophie may need a diet already.) Dr. Andrews and the pulmonologist, Dr. Lester, are worried that the diuretics are dehydrating Izzy so they're going to have us add a water flush between her feedings to help keep her hydrated. We'll go home on 0.5 liters of oxygen and turn it up to 1 liter during feeds. They're still deciding whether to add some additional medications or not. It looks like we'll be here one more day so they can solidify all the parts of the plan and send us home with just the right amount of breathing support for her to be able to bottle feed.

Although coming to the hospital may seem to you like a step back it's actually a huge step forward. Over the last week Izzy has shown us she can eat all of her feedings by mouth. We never knew that before. And, now that we're downtown, all of her care will be coordinated and overseen by Dr. Andrews. We had a pulmonologist before, but he was working in isolation as were all the other key players.



So, here's my big review on the medical profession: It's just like education! Collaboration is the key. The best schools operate as a professional learning community in which the classroom teacher, reading specialist, math specialist, speech therapist, guidance counselor, special education teachers, and administrators, etc. collaborate together to make the best plan for each student who is struggling. In my mind the pediatrician is like the classroom teacher, able to take care of most of the kids with great results. Izzy is like the student who is struggling with the typical amount of support. She needs more. More intervention, more support to meet her potential. She needs time, extra time to grow and catch up. Before coming here it felt like she had a different teacher for each subject and, since she was struggling in everything, they were all telling us what we should do to help her. Each teacher had a different opinion based on their background and the only way they were aware of each other was when I told them what the other said. No one was collaborating. So, we, the parents, were left in charge of deciding who to listen to and deducting what the real problems were based on all the opinions we heard. That is an extremely overwhelming and stressful burden to carry.



Here, it's different. The docs are communicating with each other in real time, before sending us home, and they're setting a collaborative plan for where we're headed next. It feels like it did in the NICU and it's a huge load of stress and worry off of our shoulders. Thank goodness for Dr. Andrews and thank goodness we were able to keep looking to find great care for Izzy yet again. I am really looking forward to watching her grow over the next few months and seeing her wow us with her progress. We'll keep you posted!

What Happened To Your NG Tube?

Sorry to leave everyone hanging in suspense.  Via my facebook posts, most of you probably already know that Izzy came home a week ago.  It's been so great over the last week to have Meg and all of the girls back at home, together again.  Izzy probably could've stayed in the hospital for a couple more days, but they moved her from a very nice room, down to the dark, no-window dungeon on the basement floor.  At that point, the nursing care is much more sparse and Meg would've been taking care of most of Izzy's needs anyway.  So, we just decided we could do that at home.

So far, she's been doing great!  We continued the breathing treatments for a few days, but weaned her pretty quickly.  What's more impressive is that, since last Thursday, she's finished almost every bottle by mouth without the need for the NG tube!  Plus, her reflux, or lack thereof, has been improving as she's been recovering from her bout with RSV.  I know it's not completely gone, but she hasn't been spitting up either, which is a great sign that her lower esophageal sphincter (LES) is regaining some tone and helping to keep her food down.

This morning, we woke up to a clean-faced Izzy, which if you've been reading this blog for any length of time, isn't a good thing.  The little escape artist wiggled one of her tiny infant arms from what must have been a very poor swaddling job and pulled everything off.  Her NG tube was laying on the ground next to her, as was the nasal cannula with tape attached.  What was she doing?  Smiling, of course.  We were a little flustered at first, but we decided it was actually for the best.  We had been looking for an excuse to try without the NG for a couple of days.  We wanted to see if having it out might actually help a little with her reflux, as one of our docs previously described it as "acting like a wick" in her belly, providing a path for the food (and acid) to follow up alongside of.  Also, before we taped her cannula back to her face, I measured her oxygen saturation.  She was actually doing quite well from a pure saturation perspective, but her respiratory rate was up and her retractions were definitely a little deeper than normal.  Basically, if she had to survive without oxygen, she probably could have, but it makes her so much more comfortable and has definitely helped her to relax and enjoy life a little more.  By far, the biggest impact it's had has been on her eating.  So, we're keeping it for a little while longer.

Right now, Meg's driving us down to Comer Children's Hospital downtown.  Izzy's sleeping in the back after finishing another big bottle of formula.  By the way, Neocate is freakin' expensive, especially as Izzy gets larger and starts consuming more volume.  We're on our way to see Dr. Andrews for a follow-up visit.  We were worried that we wouldn't have much to report since she was doing so poorly after first coming home from the hospital.  Now, she's like this completely different baby, except for the huge ear-to-ear smile she tosses out frequently--that never changed :)





All right, so we just left Comer and I get to be chauffeured around in my own car for another hour.  It's nice to not be the one driving sometimes, though I have to admit, Meg's driving scares me a little (a.k.a. "Distracted Driver").  Dr. Andrews agreed with our plans to try it for a couple of days with no NG.  It will most likely mean that we'll have to get up in the middle of the night 1-2 times to help her make up the lost volume from the nighttime continuous NG feed, but if it can help us avoid another surgery (the G tube), then we'll do what it takes to slowly increase her volume the "normal" way.

We also met with one of the GI docs that works with Dr. Andrews, Dr. Sentongo.  I can't remember whether I wrote about our experience with the last GI doc we saw (not. nice. at. all.), but Dr. Sentongo's bedside/patient manner was worlds apart and we left feeling so much better about our next steps.

To sum it up, for now, we're going to try to see if we can make it without the NG tube.  She's going to stay on a very low volume of oxygen.  We're going to gradually, but intentionally, increase her food volume to slowly stretch her stomach, but also to test how well her LES is maturing and see if it will allow her to handle more volume without spitting up.  We'll go back in a few weeks to discuss her progress and next steps, but for now, she's just as every baby should be--happy!



The other girls are doing so well and getting so big very quickly, too.  Right now, all is good in la casa de DeBauche.

Looking for a Master Carpenter

***On a side note, Meg and I were playing with the look of the blog (Meg mostly), as she was really getting sick of the one I chose almost a year ago.  Plus, I really wanted to make the photography a larger portion of the blog, that is when I actually have time to process our photos, and giving them just a portion of only the middle column just didn't seem fair.  I'm not 100% sure I'm satisfied with the look, but we would definitely appreciate any comments/criticism on the new format, as we're always open to suggestions.  It's all about you guys, right?  :) ***

Now, back to the real reason for the post today.  I'll warn you that today's theme is not a new one.  I'm quite sure we've expressed our concern (read complained) with regards to the strategy around Isabelle's short- and long-term treatment plan, or really, lack thereof.  Meg and I talk constantly about how we feel like we're the team leaders, responsible for making the overall decisions, after taking input from the team specialists.  Maybe that's supposed to be our job as parents, but to be honest, we feel woefully under-qualified to be making those types of decisions.

What makes it even more frustrating is when certain healthcare practitioners make comments like, "Oh, I can see you've been consulting with Dr. Google."  Heck yeah we've been consulting with Dr. Google.  If we weren't then we'd be completely in the dark about the types of decisions that we'll need to start considering if Izzy doesn't make improvements and is still on her NG tube over the next three months.  It's become very apparent that the medical field is extremely fragmented in their approach to patient care.  One specialist has a hammer, so everything is a nail.  Another has a saw, so everything needs to be cut.  I could go on, but I'm sure you get the point.  From a parent's perspective, what this means is that we essentially are getting the results from a Google search spoken to us by a person instead of having to read about it online, but the responsibility still lies on our shoulders to know which approach is best for our daughter, all things being considered.  What we really need is a master carpenter.  Someone that has an intricate knowledge of all of their potential tools, but knows when to use a sledge hammer or when it's better to just kick the wall down with their foot.  The end result might possibly be the same, but only the master carpenter knows that using a sledge hammer could possibly do more than just take down the wall.  It may actually affect the integrity of the home.  It may not be the perfect metaphor, but neither is the sea of uncertainty we've been swimming through lately.



Enter Dr. Bree Andrews.  Looking back, the time when we felt the most confident in our girls' care was when they were in the NICU.  Yes, we didn't always like the mixed messages we sometimes received when it came to some of the smaller details, but we never worried about their care or their future when they were under the supervision of the Neos.  Now, we really do love our pediatrician, but Neos seem to offer something completely different that one specialist can't provide--a complete and consolidated view.  At least that's what we were hoping we'd see from Dr. Andrews, who came recommended by Izzy's surgeon, Dr. Liu.  During a recent follow-up visit, Meg mentioned some of the difficulties we were having with all of the specialists we were seeing.  He suggest Dr. Andrews, who is still a Neo, but also specializes in post-NICU follow-up care.  We didn't even know that those types of folks existed. 

When we met with her, she had a few of the specialists from her team evaluate Izzy.  One thing they noticed right away was that her oxygen saturation level was a little low.  Not enough to cause serious concern, but enough to make her (and Dr. Andrews) a little uncomfortable.  So, now Izzy's back on oxygen, just like her NICU days.  We're not sure for how long yet, but we've already noticed a positive difference in her feedings and her general comfort level.   Several hours after we returned home, Dr. Andrews' team had already set up oxygen-for-the-home care for us and 20 tanks and a pulsox machine were delivered that night.

Yes, this is actually a pile of oxygen tanks in our dining room. The guy who delivered them suggested we lay them on their side because they have killed a couple of small house pets when they were stood upright and fell over!



Once the assessments were completed, Dr. Andrews sat us down and asked us a very simple question, "What can I take off of your plate to make your life easier?"  

We answered, "Everything."  Actually, I think we really said, "We don't want to feel completely responsible for all of the decisions that affect and direct her medical treatment." 

She replied, "Done!  That's my job now."

I felt like one of those families on Extreme Makeover: Home Edition when the truck pulls away to reveal this wonderful gift a family has received that will hopefully make their life a little or a lot easier.  As soon as she said that, Meg started crying.  Ok, WE started crying.  It finally felt like we would have a coach in our corner that would take over responsibility for running the team while we remained vital consultants to the team's overall success.  I literally saw the weight leave Meg's shoulders.  It was such a wonderful feeling to see her so happy and relieved and know that we wouldn't have to be making these major decisions alone.