Everything But The Plate

I know it's been a little while since my last post, but we've been having so much fun with our babies, I just haven't had time to write.  Two weeks is a long time in baby land.  Especially, with everyone growing so quickly!

I'll go ahead and warn you now.  There are A LOT OF PHOTOS in this post.  Truth be told, editing all of these photos is the primary reason why it took so long to post again.  These are just my favorite ones from the last two weeks.  Can you imagine how many I started with?

Where to begin?  Let's start with the abbreviated version for those of you with short attention spans.  Over the last two weeks:

- Izzy's been healing very well (gets her Mic-Key button this Wednesday)
- We've discovered that Sophie's appetite has no bounds

- Our nanny quit (another one bites the dust)

- Izzy pulled off her oxygen and we left it off!

- Maddy's been jumping like crazy and looking cuter than ever

- Izzy needed to have her oxygen turned back on (but not before we took some great pics!)

- No one needed to go to the hospital!

- I heard Izzy laugh harder than I've heard from any of these girls

Sophie weighs 18 lbs 1 oz

Maddy weighs 16 lbs 12 oz

Izzy weighs 14 lbs 3 oz

Let's begin with Sophie.  Wow, does this girl love to smile.  She also loves to get messy with her solids.  For some reason, the end result is so different when I'm feeding her than when Meg feeds her.  I think Meg is averse to trying to scoop up the food on her face while she's eating, instead, she insists on waiting until the end.  By that time, it looks like Sophie face-planted into a bowl full of squash.

Also, this girl's appetite never ceases to amaze me.  I don't know if she would stop eating if we kept feeding her.  Very rarely do her actions ever speak, "I'm full!"  One day, she decided that lunch wasn't over just because there wasn't any food left on the plate.  I can imagine her baby brain saying, "Hey, that plate looks colorful, it must taste good.  Let's give it a try."  And she did for a while before we cleaned her up, but not before I created a memory of it :)





Those eyes scream, "I just got busted with my hand in the cookie jar!"



I'll have to remind her one day that licking the plate is uncouth, unless you're at home. Then it's completely acceptable.

I don't even know what to say




Still speechless

The girls also just had their six-month adjusted evals.  Sophie was pretty much on target for everything, so she's done with official evals, obviously unless we notice something strange moving forward.

She also taught mom a valuable lesson, "Don't leave your drink within my reach," which was better learned with water, instead of wine.

Here are some other random pics of Sophia.










When Izzy first returned home from surgery, she had a lot of gas in her belly.  As part of the laparoscopic procedure, they had to pump air in to her belly to give Dr. Liu room to work his magic.  Unfortunately, when the surgery is complete, all of the air doesn't come back out before being closed up.  Instead, it has to find its way out of your body over the next week or two.  It can be EXTREMELY painful at times, as I know firsthand from my appendectomy last year.  At least I had the ability to control and move my body in positions to make it less painful.  Izzy, well, not so much.  We had to try to control her pain with Tylenol, which worked for the most part.

Now, she's pretty much gas free from the surgery.

The only real negative from the surgery has been her reluctance to take food orally.  It's definitely something we were concerned about going in to the surgery.  It's a little difficult to figure out though.  We were told that if she was going to be come averted, then it would probably happen right away.  Instead, she actually ate her bottles as soon as they allowed her to, but now, we're lucky if she'll take 20 mls in a day!  She's up to 108 cal/kilo and it's my opinion that she's just always full and doesn't want to eat.  She still will take her pacifier if she's cranky, which also makes me think she's not averted, but only time will tell.

So, even though she's taking way less formula orally than before the surgery, she can handle higher volumes without throwing up and is putting on some good catch-up weight!

We pretty much have had to keep her vented since she's been home, which means tying the syringe up to something higher than she is unless we want to hold it 24 hours a day. We set up this contraption with our ladder golf kit, which worked for the first few days.



Above, I mentioned that she pulled her cannula off of her face about a week ago.  We've always wondered how long she was going to need oxygen.  She didn't desat and her breathing didn't look labored.  I've never seen this girl smile so much.  I think she was just ecstatic to not have any tape or tubes on her face--and so were we.  We did check with Dr. Andrews to make sure we weren't putting her in danger and for a little peace of mind.

She lasted for a few days and then we noticed her breathing a little deeper, so we decide to put her back on oxygen and she seems to be more comfortable.  During that short window, we took so many pics of our little miss Isabelle.  I've never seen her smile so much as long as she's been with us.







There is nothing better than watching and listening to this little girl laugh. It makes my heart warm and makes me crack up at the same time.

Very interested in the camera

Getting a sponge bath. No real baths until the Mic-Key button is in.

Her serious face





I love this face!

Izzy's eval was pretty much what you would expect considering everything she's been through.  Think about it.  117 days in the NICU, three major surgeries, and a bout with RSV.  She's spent a lot of time on her back resting and just hasn't had the developmental time that Sophie and Maddy have had.

So, now, we're adding an occupational therapist to the mix.  Don't be too concerned.  She's as sharp as a tack, or at least I think so.  Cognitively, she's right there with the other girls.  In some ways, more so.  What's she's been lacking in physical ability to date, she's made up for in alertness and awareness.  It just may take her a little more time to catch up physically with her larger sisters.


Maddy must have just hit a growth spurt.  She's been eating about 10-15% more per day for the last few days.  She's also spitting up a little more because of it, but that's what she does.  She's probably the most low-maintenance of the three right now with regards to whining and crying.  We practically have to chase her around with a burp cloth though.

Like her sisters, she's just plain happy.  Don't be fooled though.  Feed her too late or let her sleep too little and she'll make you pay!  Besides that, she gives out smiles on demand and boy does she love her mama.



She's very interested in faces.

Those cheeks are irresistible!

And so is mommy's nose apparently!

Talk about a happy baby. This one definitely gives the other two a run for their money.



Sooooo, happy.

Moments later...blaaaah. She was still smiling afterwards.

Maddy's results from the eval were also what we expected.  She's a little behind Sophia in a couple of areas, but ahead of her in some, too!  She doesn't need any therapy for now, but they do want to perform another eval in three months.

Let me go ahead and try to wrap this up.  The weather's been getting warmer and now that RSV season has passed, we're getting out of the house more.  Getting out of the house more means a more normal feeling life, but it also means tired babies.  It's kind of like when you fly or take a long car ride.  Even though you're not really doing anything, you just get tired. Well, so do they.

Here are some pics of daily life in the DeBauche household.

Before jumping

After jumping

"What? You want me to pose for every photo?"

Good morning!

Maddy testing out the pack-n-play and also sleeping flat on her back

Everyone out for a trip to Target


Sisters


We also managed to hit Lowe's


The girls love going for walks


Did I mention the girls love going for walks?


Sweet Sophie


Someone's not sleeping. Guess who?


Have I ever told you that I hate leaving the house every morning for work?



Who else understands how much you like playing with your feet more than your sister?

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.

If you're even thinking about it, don't! (by the way, Happy Easter!)

Easter morning 2012.  What a beautiful day it was.  To be honest, most years, there's probably an equal chance that it could've been snowing, but not this Easter.  Waking up, we knew that we had one heck of a day in front of us.  Basically, our entire day was planned around making it over to Meg's aunt's Easter dinner.

This was a big deal for us.  For the most part, almost every activity, walk, etc. has been able to be planned around naps and feedings.  That's just the way it goes when mom has done the world's greatest job getting these girls on a schedule.  For everyone who's had kids, especially multiples, you know what I'm talking about.  Our girls take two naps a day, pretty much on cue, know when to expect their bottles, and sleep almost 11-12 hours each night, the latter due to Meg's persistence in pushing everyone through sleep training, including me.

Well, today, something was going to have to give.  There was no way that the girls were going to get a full, or even remotely restful, nap today.  It just wasn't going to happen.  I was dreading this.  If you're ever bored and looking to experiment with three normally happy and giggly babies, cut their nap really short.  What will emerge is a whole lotta crabby pants!  It's not a pretty sight.

But let's rewind a little.  Knowing that today was all about getting out of the house on someone else's schedule, we had the forethought to take the girls' photos in their Easter dresses ahead of time.  We chose a time when we had help and when their faces were scratched up the least.  If you're wondering about that last statement, no, they don't battle with the cat.  Even though we cut their nails, which I think actually makes them sharper by the way (even when we attempt filing), they somehow find ways to mark up their face from time to time.  "What about mittens?" you say.  Sophia would have those off in under two seconds and would probably use them as an appetizer before she moved on to gnaw on Sophie the Giraffe.

Somehow, we managed to get everyone's photo without them ruining (ie. spitting up on or ripping) their dresses.  So, by the time Easter Sunday rolled around, their uniforms du jour were still intact and ready for a couple of family photos with mom, dad, and grandma.  All of the photos for each of the girls, the family shots, and from the party are at the bottom of the post.  But before I get there, I want to make sure you all don't think I'm Mr. Crabby Pants.  Aside from some unnecessary crying and a lot of eye rubbing, the girls did an outstanding job.  Any part of their behavior was adult-induced.  They looked beautiful in their dresses and there were plenty of ladies at the party who were just itching to hold a baby (yeah, break for dad!).  Besides packing up nearly half of our house to take with us so we had everything we thought we'd possibly need, the day was a success and we proved to ourselves that getting out of the house and breaking routines wouldn't cause the world to come to an abrupt halt.  HOWEVER, I would say that if you're thinking about breaking routines, don't!  Though, if you do, life will go on.  I hope you had a happy Easter and enjoy the photos!

Miss Isabelle















Miss Madelyn















Miss Sophia


















The Fam









The Party

Ania and Maddy spending some quality time together


Kelly and Izzy enjoying their Easter together


Mom, trying to soothe a crabby Sophie


Ania, Kelly, and Steve


Izzy, obviously more interested in something on the floor than with her dad


Almost the entire group, less the kids


The kids


Keegan, Kaden, and Kylie


Look at those eyelashes!


Sophia, trying to steal a couple of z's away from the loudness of the house

"Where have you been?"

Surely, you all must have been asking yourself this question.  I ask myself every day.  There isn't a day that goes by when I don't think to myself, at least on several occasions, "I really need to write a post.  Everyone is going to think something bad happened to one of the girls."  Well, let me put your worrying minds at ease.  Everyone is okay.  Meg's elbow is even healing well enough for her to be able to do almost everything she was doing before she fell and broke her elbow.

The biggest news we have to share is that we've decided to move forward with a G tube and Nissen for Izzy.  The girls are all getting so big and are getting more and more coordinated with their hands every day.  That's not good for a girl who gets annoyed by the seemingly permanent tubes and tape on her face, who now has the ability to, at will, reach up and pull everything off.  We can't help but wonder if we're making the right decision and if we should just wait it out a little while longer, but she's pulling her tubes off almost daily and seems to be getting more and more bothered by the reflux.

I'm planning on writing another post right before the surgery (which is scheduled for this upcoming Thursday), which summarizes how we got to this point.  If you recall, one of the reasons why we sometimes put so much detail in our posts is so that other families, who find themselves where we've been, can find some solace in knowing that they're not alone and that things can and will, most likely, get better.  I also hope that our experiences may help someone feel more comfortable asking questions that they didn't know, or weren't sure, to ask.

Other than the upcoming surgery, we're having so much fun with the girls.  I have boatloads (yes, it's a word) of photos and videos of each girl.  I can't wait to share them.  I've processed most of them, so all I really need to do now is just put some words together to go with them.  Could I just post the photos and add a few comments?  Yes, I could, but another reason for this blog is that it serves as a visual diary of each girls' life and our journey with them.  Each post deserves more than just a comment or two.

I'll leave you with a couple of photos to hold you over because the Easter photos I've taken are just plain awesome!  They'll be up soon though.


I may do a completely separate post just on Baby Bjorn Bouncers and Snuggin Go, but in case I don't, they're awesome and have helped so much with their posture.


The weather's been unseasonably warm, so of course we took advantage of being able to get out of the house for a little while.