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.

Saving Her Belly Button

Today was life-changing for our Isabelle.
Today was full of "firsts" and "lasts."
Today was her first day with a bowel absent of perforations.
Today was her last day of needing a colostomy bag.
Today was her first day of recovery on her way to being able to eat full feedings.
Today was our last day of wondering when they were going to put our girl back together.
Today, Dr. Liu re-attached Isabelle's intestines.

As far as Dr. Liu was concerned, today's surgery was a success.  By no means are we completely out of the woods, though we can begin the journey of recovery and take the necessary steps to get her home where she belongs.

Watching your daughter being wheeled away for surgery doesn't get easier just because it's the third time.  The pain you feel inside for your child hurts just as much as it did during the first surgery.  For me, the only thing that changed was how well I was able to hold myself together on the outside.  There was no crying today, mostly because of the amount of confidence we placed in Dr. Liu's capable hands and because we knew that our little fighter wasn't going to let anything else get in the way of her coming home to be with her sisters.

It almost seemed routine today, going to the NICU, waiting for Dr. Liu to show up.  Once he arrived and discussed how everything was supposed to go during surgery, they transported Izzy to the OR waiting area where we talked one last time with the anesthesiologist.  We gave our girl kisses goodbye and waiting patiently, with many other families, in the OR waiting room.  After a relatively quick hour and 40 minutes, Dr. Liu emerged from the OR and came to tell us the good news.  Little Izzy was an excellent patient and the surgery went exactly as he had hoped.  He then shared a minor detail with us.  Something so seemingly small that I never once thought about it during any part of this process.  He told us that he was able to save her belly button.  I know.  It's so trivial, especially to me.  I just wanted her to survive.  But, when she gets older and starts getting self-conscious, as all teenagers do, I can only imagine what having something as simple as a belly button will do for her self-confidence.

Thank you Dr. Liu for thinking about that!  Now, it's just something we'll never have to think about again.  We won't have to explain it to her one day and try to rationalize something to a kid who would have just wanted to know where her belly button is.

Lastly, I don't want to oversimplify the impact of today's surgery.  As with all surgeries like this, we're still playing the waiting game.  We have to wait for her swelling to go down.  We have to wait for her intestines to gain its motility again.  We have to hope that the stitching heals correctly and doesn't form a stricture in her intestinal path.  We also have to hope the surgery holds and that nothing leaks at the point where the intestines were re-attached.

For now, we just get to go to the NICU, stand next to her crib, and give her kisses.  It will probably be a while before we can hold her again, as they expect that her stomach will temporarily swell and that she'll be pretty uncomfortable for quite some time.  We'll hold her hand, tell her that we love her, and keep her in our prayers at all times.

Today, our Izzy got her bowels back :)

Izzy, getting some rest ahead of her big day


Getting prepped in the NICU




Traveling with her entourage


Mom, providing a little bit of comfort to her smallest baby




The OR waiting room, in case you've never seen one


Meg, talking to Nurse Pam after the surgery


Our sweet girl, recovering after a long day

No Sweat

Is this all?  This is nothing.

Wait.  There's still more of them?

Well, as we finally settle in and get comfortable with one of our girls at home, we get ready to double our home workload today.  After a few false alarms, Madelyn will be coming home to join Sophia and end her time in the NICU later this afternoon.  She'll come home at a whopping 5 lbs 10 oz which is amazing considering she was born at 2 lbs 8 oz.  She's still having a lot of trouble with reflux, and the rice cereal they started adding several days ago really doesn't seem to be making much of a difference.  While it doesn't appear that she'll be coming home with any monitors, we'll need to continue with her doses of Prevacid and Zantac.  What's really scary is that all of our girls seem to love being held.  Who doesn't, right?  It probably doesn't seem as unmanageable when there's only one.  With the prospect of having three at home before Christmas, it will definitely be something we have to learn how to manage because I know we're each going to want to figure out a way to hold them all at once.  I'm sure we can find a way, but their necks keep getting so strong that if you're not holding on to one of them with both hands, they love building up some momentum and tossing their heads back.  If you're not holding on tight, you'd probably see some back-flips.

Maddy, sleeping through her last days in the NICU


A proud dad, working on his rarely used biceps


Maddy, with those yucky, green vitamins


Isabelle has been doing so well lately. She's up to 1940g or ~4 lbs 5 oz, which seems even more incredible when you remember the fact that she was born at 1 lb 7 oz. All of her labs continue to come back clean, which is something they're really watching because she's been on the TPN for so long. Also, the minor surgery she had a little over a week ago to keep her stoma in check, finally came undone. Now, Dr. Liu wants to do the big surgery sooner rather than later, but still wants her to be a minimum of 2000g, or ~4 lbs 7 oz.  So, we're only a few days away from hitting that target weight, though if she can make it longer and grow larger, without a lot of dumping, that would be ideal.  For now, we're probably looking at having her, hopefully, last major surgery, which will re-attach her intestines, within the next week or two.  Personally, I'm really torn.  I know that the larger she gets, the larger her intestines will grow.  The larger her intestines grow, the higher the likelihood that this surgery will work the first time.  I just want her to come home with her sisters and to be able to hold her without worrying that I'm going to hurt her.

Izzy, getting a lot of rest and growing as a result of it!


Sophie is really adjusting well to being at home. I can't say as much for the parents though. Obviously, we are thrilled to have her here with us, but she just doesn't seem to be as relaxed as she used to be in the NICU and it's definitely messing with our sleep. I'm not complaining, because I wouldn't miss a minute of it, it's just that she doesn't ever really seem to sleep for any extended period of time. I'm not sure if it's gas or if it's reflux or if it's because she's eating too much or too little, she just seems irritable for these small moments that wake her up temporarily, then she drifts back to sleep.  Maybe it's normal.  Maybe it's because they've almost reached 40 weeks GA and they're not going to sleep as much as they did when they were preemies.  All I know is that she keeps growing and we're finding better ways to each get sleep and share the responsibility.

Sophie, enjoying some time on the Boppy


No, before you ask, we don't let her sleep there


Perfect example of post-feeding cuddling to keep her upright


We haven't forgotten that parents need a break, too. Last weekend, we took advantage of some beautiful fall weather and a willing babysitter (thanks mom) and went downtown to watch Penn State beat up on Northwestern. We loaded up the truck with family--Meg, Kelly, Steve, Kaden, John, Jo Anne, and I--and found a great tailgating spot near the stadium. We had a great time, but it really seemed to fly right by. Penn State won. We got to spend time with family. Not much else you can ask for :)

Meg and I at the Penn State vs. Northwestern game last weekend


Meg's dad, John, enjoying some one-on-one time with Sophia


Also, I want to apologize for the apparent loss of any creativity on my part. I remember when I used to sit down with my laptop, process my photos, and had a difficult time deciding what part of our crazy life that I wanted to share. Now, even though I know so much has happened over the last week, I find myself struggling to write with any flow or sense of humor. "Just the facts, Ma'am." That's about all I'm capable of right now. It will get better (I hope).

Going Above and Beyond (shout out to myself!)

***Please note that this post was written in the middle of the night, after surgery, on a pain med drip--It's also a little long***

Just a tour? Who settles for just a tour of a hospital when you can get a taste of the real thing? Not this supportive husband. If you recall, about a month ago, Meghan and I visited a couple of the hospitals in our area in hopes of making a more informed decision as to which hospital we were going to entrust with the delivery of our girls.  We met with nurses, asked a ton of questions (ok, I asked a ton of questions), we took tours of the NICU, checked out the recovery rooms, etc.

Something was missing though, as we just weren't able to definitively choose which hospital we liked the most.  I couldn't exactly put my finger on it though.  So, my body, fully aware of our internal dilemma, decided that, in the best interest of choosing at which hospital Meg was going to deliver, it would donate one of my organs to the cause as a way of providing entry for a first-hand experience.  The organ de choix--my appendix.

(Rare photo of me taken with the webcam)




It all began when I noticed a pain in my stomach on Wednesday night, unlike any pain that I had felt before.  I've definitely felt worse stomach pains.  I was just having a difficult time locating the source of the pain, even though I could feel the pain centered right over my bellybutton. I was hoping that a good night's sleep would cure the problem, but I ended up waking up several times throughout the night with more severe pains, mixed in with what felt like bouts of fever.  When I woke up in the morning, the pain had diminished a little bit, but I also noticed that it had migrated from the center of my belly to the lower right quadrant of my abdomen.  At that point, the pain was coming and going in waves.  It's really hard to describe it though, but I'll try.  Basically, it didn't feel like an upset stomach or when your stomach cramps up.  It also didn't feel like sore ab muscles, like you feel two days after doing crunches when you haven't worked your abs in a long time.  It felt like the pain was locked somewhere in between my stomach and ab muscles.  Though I did try to "stretch it out" to no avail, just in case I had inadvertently used my ab muscles while I had been on the computer at work.  Like I said, it was a strange feeling. 

I never actually got sick though, which was great, because any sort of movement was definitely providing an opportunity for the pain to remind me that it was still there.  The convulsions involved in vomiting would have definitely put me over the edge.

Because I wasn't displaying any of the really serious symptoms of appendicitis, I almost wrote the pain off to constipation, or some other bowel-related issue.  To be sure though, I called a couple of friends who are now sans appendix and, of course, my mother who has been an RN for almost three decades.  I compared notes with everyone, as well as to what I was reading on WebMD and decided it was better to be safe than sorry if it really was my appendix.

When I checked into the ER, I actually got a little embarrassed.  At one point, the doctor asked me to rate my pain on a scale from 0-10, with 10 being the worst pain possible.  Honestly, at the time he asked me, it was 0 and that's what I told him.  I started to think that I had over-reacted to what would probably end up being gas.  Well, that was about five seconds before he pushed down on my abdomen, where the pain immediately jumped to a 8 or 9.

After that, the next stop was to get a CT scan.  Upon entering the room, the nurse said that we'll start with Option #1 (as if it were realy an option), then the radiologist would determine whether or not we'd need Option #2.  Like any curious patient, I asked the obvious question, "What are Options #1 and #2?"  To which I received the answer, "Let's just start with Option #1 before we WORRY about Option #2."  It wasn't really a satisfactory answer to me at the time, but now I understand why she explained it that way.  After raising my arms above my head and moving in and out of the CT scan a few times, the radiologist called down and said that he could see what he needed to and that Option #2 was off the table.  So, the nurse finally explained that if doing a basic CT scan didn't provide a good enough view of my appendix, they would have needed to perform a RECTAL CONTRAST, thus why they kept it the "secret" Option #2.  Radiology nurses, thank you for that by the way.  No need to worry an already sick patient.

(How they remove the appendix)


After confirming that I did, indeed, need an appendectomy, they were actually able to squeeze my surgery in within the hour.  I'm not going to lie, I did get pretty nervous when they started to wheel me back to the OR.  The worst thing I've ever been to the hospital for was a fractured wrist.  I've only ever been knocked out once, and that was when I had my wisdom teeth removed.  But I've never had a tube down my throat or a catheter before now (speaking of catheters, I didn't know they had used one until the first time I tried to use the restroom in the middle of the night).  If you've ever had a catheter, you know what I'm talking about.

Since I slept for most of the evening yesterday, I woke up around 3:00am this morning.  I won't bore you with all of the details of how nice my room is, but there are two pieces of equipment which I wasn't aware of before I arrived, but make complete sense and make me want to thank the thousands of patients before me who probably created the need for these tools so that I didn't have to suffer.

Do you know how easy it is for abdominal surgery patients to get pneumonia?  I didn't.  Apparently, most post-abdominal-surgery patients fail to breath deep enough which cause the farthest reaches of the lungs to be under-ventilated and, eventually, collapse.  So, I have to take 10 deep breaths per hour out of this device, below, to keep from getting pneumonia.



Also, it's very easy for any surgical patient to get blood clots in their legs from lying still for too long.  Now, they have what look like equivalents to blood pressure cuffs that alternate their inflating and deflating to ensure that the blood keeps flowing through your legs. It felt a little strange at first, but then it was almost like someone was gently massaging my calves for hours on end.



Well, I'm hoping to get released today, but for now, I'm still hooked up through this IV,



which is feeding me fluids, antibiotics, and the occasional pain med.  I have to take it with me everywhere.  Everywhere consists of two places right now--the restroom and the entire recovery room floor.  They're encouraging me to get up and walk around as much as possible to help get my digestive track moving again.  If anyone has ever seen Something's Gotta Give, and you remember the scene when Jack Nicholson is in the hospital, you'll get the next reference.  I was walking around the floor with my IV stand and one of the nurses came up behind me and asked if I wanted a second gown to help cover up.  Lord, I hope she thought I just looked cold or something, because I know I didn't tie the back of my gown.  I can't reach back there!

I'll go ahead and wrap this up by saying that I think we found our hospital.  The experience here has been great and the nurses here have been wonderful.  All in all, I think I could've done without the catheter experience, but for a guy that likes to get his hands dirty and get into the mix, there was no better way to assure myself that delivering our babies at Edward Hospital will provide the right experience for us!

Lastly, I want to give a shout out to all of my nurses - Kathy, LaShonda, Rose, and Majen.  Thanks for taking such good care of me ladies.