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?

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!