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 :)

Everything Smells Like Spit-Up

I've always thought that babies had a very particular smell to them.  Having given a few baths now, the smell I had stored in my mind was baby shampoo.  Over the last month or so, all I can smell now is spit-up.  Whether it's spit-up, breast milk, or formula, they're all pretty much smell the same to me.  It seems to be everywhere.  You can find it on the girls' clothes, in their cribs, on the sides of their bouncy chairs, or on any one of a hundred burp cloths that litter our floor each day.  Let's not forget my clothes and skin.  The smell has taken over!  All right, so I'm probably being a little over the top, but it's top of mind today.

Meg and Jo Anne went to visit Izzy in the hospital today and I stayed home with Sophia and Madelyn.  If you've been reading for any length of time, you probably know that Maddy's been battling with reflux since she started eating.  Well, today was just one of those days.  Maddy was inconsolable.

On a side note, I'm constantly fighting this internal battle between deciding how much to hold her and how much to let her try and get comfortable.  I'm not going to make it sound easy, because I struggle with it daily.  I know you're not supposed to be able to spoil your baby for the first three months by holding her too much, but it feels like she's training us to pick her up.  Though, choosing not to is just as tough because I literally have a physiological reaction to her crying--she makes me sweat.

Well, I let her cry for a while today.  I put her in the room next to Sophia so she wouldn't wake her up.  After a while, it was apparent that she wasn't going to stop and calm herself down.  It was about feeding time, so I went ahead and gave her a bottle.  She seemed to take it just fine, but during the delicate burping process--more like extremely light rubbing on her back--she projectile vomited all over herself, my arm, and the chair.  I changed her clothes, washed my arm, and wiped down the chair.  I can still smell the spit-up and I don't think that's going to be changing any time soon.

It was a very difficult day for Maddy and me.  I felt bad.  Like I let her down.  She was just so upset and I couldn't find a way to make it better without holding her non-stop.  If she were our only child, it might be easier, but Sophia needs attention too.  In the end, we survived.  Tomorrow, is another day.



Right now, Meg is going with the "I'll hold them whenever I can" approach, as evidenced by the photo below.  Yes, those are little baby footprints from snuggling with mom for a very long time :)  Take a look at that hot belly from a mother who delivered triplets!



The girls are all growing, but Sophia is definitely jumping ahead a little.  As of Friday, Sophia weighed 7 lbs 2 oz, Madelyn weighed 6 lbs 6 oz, and Isabelle weighed 5 lbs 4 oz.  We're feeding Maddy a little bit less than Sophia at each feeding because that's all that she seems to be able to keep down.  When we feed her more, she seems to spit up more, so we're really just trying to find the perfect volume.  She's still growing, just not at the same pace as Sophie.  I'm hoping that as she matures, the reflux will get better and she'll be able to eat and keep down more food.

Isabelle is still progressing very well.  The doctors want to have a meeting with us to talk about when, and in what condition, she might come home.  There's a pretty high probability that she may come home with an NG tube.  She's only taking 11 ml at each feeding and they're only increasing it one ml per day.  She needs to be up in to the upper 30s before they'll take her off of the TPN.  So, coming home with the TPN is also an option.  Lastly, she may come home with oxygen, but she's on the micro-flow at .04 L and it seems like they'll be able to ween her off of that last bit before she would come home.  Other than that, her incision is looking better each day and she's making really good eye contact.  On Friday, she had a follow-up visit with Dr. Davis, her opthamologist, and her ROP doesn't seem to be progressing.  She's in stage 1 in one eye and in stage 1/2 in the other eye.  Both are in zone 2.

The only area where she really needs to improve is her eating.  With all of the surgeries and not being able to eat milk, she seems to be struggling with her sucking and swallowing.  Meg tried to bottle feed her the 11 oz of milk today and it didn't really go that well.  The speech therapist will be working with her to help her get better, she's just a little behind the other girls.  The one area where she's not behind is in the holding department.  Boy, does this little girl love to be held.  Even though we can't be with her all of the time in the NICU, the nurses ensure us they're cuddling with her as much as they possibly can.  NICU nurses, thank you for that.




I thought I'd give you a little preview of my first attempt at taking baby Christmas pictures.  I'll be sure to share the finished products later, but here are a few outtakes.

It's amazing to think this is the same quiet girl asleep in the first photo, above.  Though, I would say it's par for the course when you try to move her at all.

Maddy


Meg had to stand right out of the frame so she could pull out the pacifier when I was ready to take the shot.  I had microseconds before that innocent face turned sad.

Sophie


Sophia had been planning her getaway ever since she heard I was going to be posing her with her butt up in the air.  I have no idea how all of these baby photographers get the kids to "pass out" for the pictures.  If the wind blows in China, my girls wake up.



I know this has been a pretty long post, but it seems like I'm only able to take time about once a week right now to put something together.  About a week and a half ago, I captured a priceless moment when both girls were on Meg's chest.  It's priceless because they're very cute, but also because they're almost too big already to both lay on her chest comfortably any longer.  Enjoy!

Snoring Like Grandpa

Leaps and Bounds

Where to begin?  How about the fact that weeks go by like days used to.  The girls have made so much progress over the last week, I almost feel like I'm cheating everyone by only sharing the most recent updates.  Every day brings a new surprise or an accomplishment.  I'm just going to tell you where they stand today.  Just know that Meg and I felt as excited each and every day with their progress, as we do today.

Also, I know I've mentioned this in the past, but we really do appreciate all of the attention, love, and prayers that we and our girls receive.  Meg and I snuck away for 24 hours to Sarah and Zac's wedding (separate blog post forthcoming) in Washington D.C. on Saturday.  So many people came up to us at the wedding and asked about our girls.  We were told on several occasions that people had their churches and prayer groups praying for us.  We want to say "thank you" from the bottom of our heart and, whatever you're doing, keep doing it!

This past Friday marked 36 weeks GA and they're seven weeks old today.  Sophia is up to 4 lbs 15 oz, Madelyn is up to 4 lbs 11 oz, and Isabelle is up to 3 lbs 2 oz.

Let's start with Isabelle since we probably put a scare into everyone during our last update.  If you recall, the docs tried to start up the trophic feeds without success.  After a few days, they tried again and our little fighter's intestines finally woke up!  In fact, today, she took three of her feeds from the bottle.  She's only getting around 8ml per feeding right now, but she's doing so well with it.  The stool that's coming from the stoma is exactly what they would expect from a breastfed baby--yellow and seedy.

Today also marks the four week anniversary of her surgery.  At this point, the surgeon could decide at any point to reconnect the two ends of the intestines that are currently healing above the surface of the skin.  What will most likely dictate how much longer he allows Isabelle to heal before her next surgery will be when she begins dumping.  I'm pretty sure your mind just started envisioning what I could possibly mean by dumping.  Yes, it's probably what you're thinking it is.  Basically, she's able to digest her current volume of feeding with the length of intestine between her stomach and her stoma.  We'll know she's not able to keep up when it looks the same going in as does coming out.  The docs will keep increasing her volume until it's apparent that she needs more intestine, i.e. the food needs to have a longer visit inside, to help digest the food.

Besides that, her lungs seem to be doing very well and she doesn't appear to be letting anything else hold her back.

Meg loves her skin-to-skin time with Izzy


Mom soothing a fussy Isabelle


Letting gravity do the work during one of Isabelle's feeding


She sure is one tough cookie, but even cookies need to rest


...more resting...


I sure do wish I knew how to make these babies smile on demand. For now, I'll just continue to wait patiently with my finger on the shutter release button and the auto-focus mark set on their eyes.  These girls are really helping me out though.  For no apparent reason, they just start smiling.  You really just have to be there to see it.  It cracks me up.  All kidding aside, I laugh a little every time one of them smiles.  Seriously, just looking at the pics below leaves me snickering.

Madelyn


Sophia


I was recently told that as your children grow, you'll go back and forth over who they look like the most.  Meg and I both agree that, for now, Maddy definitely looks like a DeBauche baby, while Sophie and Izzy definitely have some Carrick genes.

Look at that double chin! She does look like me!


Maddy is doing great! She's still on the nasal cannula and they have been trying to ween her off of it for several days now. She was slightly anemic a week ago which is what precipitated her needing the extra oxygen. Her blood tests looked much better this past Friday, so it's just a matter of time before they can remove that pesky tape from her face. She, like Sophia, is going gangbusters with their feedings.

Her only real issue at the moment, besides needing the oxygen, is some really bad diaper rash.  I'm talking so bad that the nurses actually use a concoction, stronger than Desitin, that I fondly refer to as "butt plaster."  Strange, I know, but you have to see this stuff.  I really think you could patch your walls with it.  It's a mix of Desitin, stoma powder, and a third magical ingredient which is escaping me at the moment.  What's worse is that Maddy's elimination system seems to get stimulated when you apply the plaster, so much so that she literally pooped on my hand as I was applying the paste.  Of course I struggled with what to do with a recently-changed, semi-clean, full-of-plaster baby while one of my hands held her legs high and the other, well, it was a mess and doing nothing.  I eventually worked it out, but it does remind me of my episode with Sophia's diaper-changing that took as long as a Jeopardy episode to get through.

I'm sure she'll get me back for this one day, but since she's so small now and I'm the dad, I'll share a precious moment, caught on disk, of how the nurses help treat the diaper rash by letting her air it out.  Yes, that's my girl on her side, getting a fresh breeze on her dairy aire.



Sophia still seems like she's in the lead to make it home first.  She had an "episode" today while taking her vitamins, though I have to believe that most adults, too, would have an "episode" with that stuff.  It looks bad and smells worse.  Once she goes seven days without a sleeping episode and five days without an eating episode, she'll be taking her first of many rides in our triplet transporter (aka. Nissan Armada).  I told her the good news and she was so excited.  Look for yourself!



She is eating all of her feedings now from either the bottle or breast. In fact, they just moved her from the green nipple (slow flow) to the blue nipple (faster flow). She didn't skip a beat. Maddy is actually on this nipple, too.



The more weight they gain, the bigger their cheeks get. Case in point. Look at these cheeks hanging over my fingers while she's getting burped. I'm sure they'll get much larger, but for us, these girls seem like little porkers right now. They look so healthy.



After the burping comes another nap.



Actually, these last four images are pretty indicative of all of their sleeping and eating cycles. First, they wake up and are full of energy. We prep them for their feedings. They eat. They look amazingly cute as they get burped. They pass out until their next feeding. What a life :)