Saturday, December 31, 2011

Wait A Minute. 2011 Is Already Over!?!

Where did this year go?  What a whirlwind.  The holidays are winding down and all of our help is preparing to depart back to their own homes.  Meg and I are still on the search for a full-time nanny or "mommy's helper" to make it through the day when I'm at work.  Every day is still hectic, but I'm always amazed each morning when I wake up, see our girls faces, and notice the changes in each of our girls from the day before.

Today is New Year's Eve, a day when most of us stop for a moment and reflect on the previous year.  A day when you briefly analyze the things that went well during the year and those that you vow to improve upon in the next.   I can say, without a doubt, that 2011 has been the most amazingly, busy, scary, exhausting, exciting, hectic, surprising, and wonderful year of my life.  I think having kids has that effect on most.

Speaking of kids, here's a quick summary of how everyone's doing.  If this blog post is already too long for you, just know that all of the girls are progressing extremely well and are ready to ring 2012 in with a bang!

Sophia seems to be the most mild-mannered of the bunch.  She will sometimes sleep a seven hour stretch at night which makes mommy and daddy very, very happy parents :)  She usually smiles in the morning, after you change her diaper.  She cries the least and weighs the most, coming in right around 11 lbs as we wrap up the year.  She enjoys time on her back on the activity mat, trying to hold her head up when she's on her belly, and looking around the room with bobblehead-like coordination (she's actually a little better than a bobblehead when we give her some trunk support).

Isabelle weighed in at a svelte 7 lbs 4 oz the other day.  She's acclimated to home life, away from the NICU, quite well.  She probably gives the most eye contact out of the three girls.  She loves being held, a trait she picked up from the NICU nurses at Edward (thanks Melissa and Linda).  She's still on a continuous feed throughout the night, which actually allows her to sleep nine to 10 hours straight, which makes her a fan favorite right away :)  She was the first to really start noticing her hands, at least eating them anyway.  I think she realizes there's a thumb there that may be an easy replacement for a pacifier.  Let's hope she learns quickly because being the Chief Pacifier Retrieving Officer is a job I'm ready to give up.

Madelyn finishes up the year with chubbier cheeks and brighter eyes.  She's still on multiple medications to help with her reflux.  Overall, she seems much happier throughout the day and you just can't keep yourself from looking at her angelic face when she stares right back at you.  She weighed in around 10 lbs and seems to be catching up with Sophia.  We're only letting her sleep for four-hour stretches, primarily to make sure she's not starving when she wakes up because she CAN get a little cranky when she's hungry, but we love her anyway :)

If you're interested, Meg put together a photobook as a gift for our parents and my grandma.  It's a photographic summary of 2011, starting with last New Year's Eve when we lived it up after finding out our first attempt with IVF had failed and ending with this Christmas.  The link, below, should get you there and you don't need to log in to view it.

The DeBauche Triplets 2011 photobook

Even though I would sell a kidney for a full night's sleep at this point, both Meg and me consider ourselves extremely lucky to have a reason to be so sleep deprived and are looking forward to 2012.  In 2012, our girls will continue to grow, pass milestones, and make us laugh.  I'll continue to blog and share our experiences as long as you continue following along.  Thanks for reading and all of your wonderful comments in 2011!  Have a very Happy New Year!

I'll leave you with a couple of photos that we took during Christmas day and night, that didn't make it into that day's blog post.

As long as Meg and I have been together, we've had Christmas day dinner at her mom's house.  Usually, the table seats about 30 (not kidding).  While this particular Christmas day was pretty much like the day before and after it, ie. changing babies and feeding babies, Meg's stepmom, Jo Anne, sacrificed Christmas with her family, as well as three additional weeks of her life, to be with us and cooked a wonderful meal!  Thanks again for giving us so much of your time and love Jo Anne!

It wouldn't be Christmas dinner if there weren't Duoderm and Tagaderm sitting on the table

Shallee and Kylie came over on Christmas to visit and help with the babies

I took this photo of the girls on Christmas day.  I ended up with two versions--the calm, relaxed version with pacifiers and the out-of-control, screaming baby version on the bottom. We could just pretend that they were just singing Christmas carols, couldn't we?  Which one do you like?

Thursday, December 29, 2011

Now, We REALLY Have Triplets

Well, we're about a week and a half in to REALLY having triplets.  Izzy came home on 12/19 and our lives will truly never be the same.  It's been an incredible 10 days (yes, I'm counting days at this point).  Everything that I thought about how life would be with three, got blown out of the water the day after Izzy came home.  We've basically gone from playing man-to-man to needing to play a zone defense.  I've tried to explain it to people, but it's an experience that can never truly be explained to its fullness or understood in its entirety by folks who don't have triplets.

Our departure from the NICU last week was pretty uneventful.  After a four month stay, I thought I might be a little more emotional.  To be honest, we were ready to leave and not come back.  We'll surely miss all of our nurses and doctors and will be forever thankful for the care and love they gave our daughters, but I won't miss having one of my babies at the hospital with the other two at home.  We've been trying to ween ourselves off of the care that the NICU provided and have only called back a handful of times for help with some of the inevitable questions we've had.  It doesn't matter who answers the phone, they're always willing to help and ask for updates on how all of the girls are doing.  Even our favorite nurse, now friend, Melissa, came by last week and spent several hours just holding the girls.  I can see how they might get attached :)  We love it!

Izzy, buckled in and ready to get home and see her sisters!

Meg and our smallest girl

Happy to be leaving the hospital

Meg, glued to her baby.  Wait, if I'm taking this photo, who's driving?

Saying that we are utterly exhausted would still be a huge understatement.  Everyone says that "it gets easier."  I sure as hell hope so.  We're running at an unsustainable pace, and that's with help!  Don't worry about us though.  We'll get through it.  We're already adjusting to even less sleep and we're really trying to be diligent when it comes to keeping the girls on a schedule.  They're adjusting, too, which makes this transition much more manageable.

We're learning on the fly and adjusting our behavior based on how our girls respond.  They're pretty good at letting us know when they've had too much to eat, when they're getting bored, and when they just need to be held for a while.  I'm not sure how aware of each other they are yet, but I definitely think they use crying as a way to communicate with each other.  If they're even semi-awake and one starts crying, the other two easily chime in, even to the point where it sounds like they're singing the same tune.  Even though it's extremely loud, it's hard for Meg and me not to look at each other and smile :)

Bottle washing and formula mixing absolutely take up too much of our time.  I don't see us getting away from it anytime soon though, so we're just trying to get faster.  What's really time consuming is calculating everything that you need for the next day.  All of the girls are on different formula.  The breast milk-to-formula ratio is different for each girl.  Plus, they're all on a slightly different calorie make up.  Add to that the fact that their volume requirements seem like they're constantly in flux.  If you're not good at mental math, forget it, your toast!  So, it's probably a good thing that I'm doing the bottles (sorry babe).

Let's see.  What else has been really exciting this week?  Oh yeah, Izzy pulled out her NG tube three times on Christmas night, Maddy has been extremely constipated, and we're trying to switch Sophie from sleeping on her stomach to her back (not fun).

Believe it or not, I've been working on this post for five days.  I just can't seem to get enough time to put a complete thought together and write in a way that flows.  I'm sure I've complained about this before.  So, if I don't hit "Publish" now, you may never see this post!  There's definitely more to come!

Sisters, Sophia and Isabelle, spending some quality time together for the first time!

Meg, Sophia, and Izzy

Izzy, looking almost exactly like Sophia

Izzy, practicing her bottle feeding

Izzy, assuming the post-feeding, sleeping position

Sophia, lounging with all of her baby chub.  I never thought our babies would be "chubby."

Dad, with Sophia and Isabelle

Izzy's first bath!  Well, her first at home at least.  She and the other girls are so close to sucking their thumb.

"Mom, get this big frog off of me!"

Santa brought Wubbanub's for all of the girls.  Izzy loves her pink puppy pacifier.

Maddy, spending some quality time with Kelly

Triple-wide!  That's how we roll!

Can you tell, in order, who's been crying the longest?  HINT:  Let the color on the face be your guide

Aaaaah, a nice photo, with no crying, of all the girls

Izzy was a littttttle hungry and accidentally mistook Maddy's cheek for a nipple.  Yum Yum.  Look at her eyes!  Cracks me up every time!

Keegan and Kelly spending some time with Sophia

Grandma Jo Anne working her magic with Maddy

Mom and Izzy

If you've put in a full day's work, your shirt will probably look like this at the DeBauche household.

I love this photo!  Maddy, with her Wubbanub.  She has the biggest eyes when she's not crying.

Sunday, December 25, 2011

The Christmas Card That Didn't Quite Become One

Truth be told, I had every intention of making a Christmas card this year. I actually started planning on this exact card four years ago, not knowing exactly when I was going to make it. Without context, that probably sounds a little strange. Let me explain.

Before Meg and I were even engaged, I knew that one day, we were going to have kids. In fact, I think we knew we were going to get married after our first date back on October 3rd, 2007. At 30 years old, I still didn't have a hobby for which I was truly passionate about. Most of my days were spent working and having fun. Don't get me wrong, it wasn't a bad life. Just not the most productive and purposeful one.

I had always been interested in photography, but always regretted not taking a class in high school or college. I never knew anyone that was really into photography either, or, if they were, it never came up in conversation.

In late October '07, I surprised Meg with a night away. We drove up to PA and I took her to see Frank Lloyd Wright's Fallingwater house. When we arrived, we spent the night nearby at the Summit Inn Resort.  I remember wanting to be romantic and taking hot chocolate outside to look at the stars.  We were both feeling it, too, until we couldn't feel anything anymore.  When our hands started to shake and we could no longer stand seeing the sight of our breath, we went in to escape the cold.  It was a nice effort and one that, I hope, will always be remembered (right honey?).

The next day, we drove a few miles up the road to take a tour of the home.  I had brought my little point & shoot camera.  I managed to get one photo of Meg and me, taken by another visitor, before I dropped my camera.  That camera's sensor never saw an ounce of light again, but this camera's death sparked a new interest!

After that trip, I began researching for a new camera. At that point, I was working for Sun Microsystems and was managing a lot of accounts in NY City. Since we lived in DC at the time, a few days a week, I would take the Acela train to get back and forth. One of my colleagues, who was supporting my accounts, was a huge photography buff. We had hours on the train together. I learned so much from him and it made me more excited about photography than I had ever been before. I think what finally put me over the edge was my first visit to B&H Photo Video. If you're really in to photography, you're no doubt aware of this amazing toy store for adults. It rivals a casino with its ability to draw you in and keep you there for hours while being completely unaware of how much time has passed. He helped me pick out my first "real" camera and I was hooked.

I like to say that my passion for photography was born in January of 2008 and I've since been addicted to learning and practicing everything I can when it comes to photography and lighting.

So, let me try to bring this full circle since I got off on an awfully incredible tangent :)

I knew that babies grew up fast and now I have proof.  I wanted to make sure that I was able to capture as many moments of their lives because they're oh so fleeting.  I didn't want to settle for P&S photos.  I wanted memories with feeling and emotion and ones that would take me back to that day when I looked at the photos years later.

Yes, my passion for photography was primarily sparked by the desire to take great photos of my kids, way before I knew I was going to have them. 

This brings me back to the Christmas card that no one will be receiving this year.  Let me just say that if I HAD found the time to make a Christmas card and send it out, it WOULD have included some cute photos of our girls and full family pic of the five of us.  Probably something like the photos, below.

Just know that all of our friends and family are in our hearts at every moment.  We are so thankful for our girls and for everyone we have in our lives.  Thank you for the love and support we receive daily.  Every call, letter, e-mail, facebook post, and blog comment lets us know that we are thought of and provides us with the fuel to get through each day (and night when I'm trying to keep up with this blog).

The entire DeBauche family--Jeremy, Meghan, Sophia, Isabelle, Madelyn, and Abigail (the cat), would like to wish you and yours a very Merry Christmas!





The girls' first night home together

Meg and I took this photo at the NICU, right before we brought Sophia home, since we weren't sure whether or not all of our girls would be together again before Christmas

I think I hear the pitter and patter of each little hoof on the roof. Time for bed!

Monday, December 19, 2011

When I Grow Up, I Wanna Be...

"When I grow up, I wanna be a bottle washer!"

If ever a statement was less likely uttered by a child, it would have had to have been something like,

"When I grow up, I wanna be a bottle maker!" or,
"When I grow up, I wanna be a formula calculator!" or possibly,
"When I grow up, I wanna be a diaper changer!"

I honestly can't remember what I wanted to be when I grew up when I was a kid. In high school, I had it pretty much narrowed down to either an architect or a stock broker. There was a time at the end of high school and early college when my plan was to participate in ROTC, work for 20 years in the military, retire from the military and start a new career in my early 40s.

Quite honestly, I don't think I ever thought to myself, "One or two babies would be a piece of cake. Why don't I go all out and try for three babies!?!"  Well, as fate would have it, somehow I ended up in IT Sales and now, I'm a father to beautiful triplet baby girls.  The latter, turning out to be the most challenging career path I could have imagined, but quite possibly, the most rewarding!

I know I've mentioned this before, but I'm going to have to get much more efficient with my blog posts if I'm going to have any chance of keeping up with it.  Maybe I'll shoot for more photos and less words.  I think everyone likes the photos better anyway :-)

Today, is a really exciting day for the DeBauche triplets.  Today, we bring Izzy home from the NICU.  Today, our lives get exponentially busier.  Today, our lives are exponentially blessed.  We've always been a family, but now we're just a family that gets to see each other everyday and grow together.

I'd like to say "Thanks" for the support you've all shown while we've had babies in the NICU.  Get ready for some exciting adventures and stay tuned for, what I hope will be, some really awesome photography!

Here's a sneak peek behind the curtain at the bottle factory.  Because we're doing a mix of breastmilk and formula, we typically start each day with separating out the milk into each bottle.

Then, right before each feeding, we add in the formula from each of the girls' mixer bottles.  Meg picked these up at Bed, Bath & Beyond.  They're called the Blender Bottle.  They come with this little metal whisk ball that helps break up the formula inside the bottle and get it off the side walls.  Each girls has one with their name on it since they're all drinking different formula.

The fridge is in total chaos.  I should've taken a wider angle shot to show all of the other unmeasured, freshly-pumped milk on the other side of the fridge.  I'm sure there's some equivalent to a "You know you're a redneck when..." joke in there with how much breast milk and formula we have in the fridge compared to food, but obviously it would start with a "You know you're the parents of triplets when..."

Each morning I wake up, I can't help but be reminded of the "It's Time To Make The Donuts" guy.  That's me!

Thursday, December 15, 2011

As Soon As You Figure Something Out, It Changes

While the meaning of the title of this post is pretty widely accepted and agreed upon, it's never been more true in my life until we had babies.  Already, I can't tell you how many times we thought we figured out exactly...
  • how much food to give the girls to keep the full, yet not make them puke
  • at what time to give Maddy her Prevacid and Zantac in between feedings to reduce the pain of the reflux
  • what position they like best to rest and sleep
  • how long or short they can stretch between feedings
  • how to keep on a schedule
  • how many feedings per day they'll take
...just to have it all change the next day or work well one day, then not the next.  At this age, there is no "set it and forget it" process that allows your brain to relax, not even for a moment.  Having triplets truly is taxing on the body AND mind.

If we're fortunate, next week, we'll get to throw another big variable in to our daily equation.  A variable that's invariably as cute as the others-Isabelle.  For the last week and a half, the docs and nurses at Edward NICU have been preparing her to come home after a way-too-long four-month stay.  They've continued to look for any explanation of why she may be having difficulty eating and have been practicing with a new feeding schedule.

I think I mentioned before that her ENT exam showed there was nothing anatomically wrong that would cause her to have difficulties eating, swallowing, or breathing. 

Also, the results from the MRI came back negative, too, which we were ultra excited to hear. 

Her direct billirubin numbers are also way back down, close to the normal range.  Hers was up near 4.0 and is now back down to 2.2.  2.0, and below, is considered normal.  We were expecting this to happen once she was off of the TPN and she's right on schedule!

Feeding-wise, they've been consistently sticking with a 9pm-6am continuous feed through her NG tube.  This gives her, and will hopefully give us, the most rest possible when she gets home so she can grow and we can try to keep our sanity.  She'll get four bottle-feedings per day at 9am, 12pm, 3pm, and 6pm.  We're expecting that she'll eat some by bottle, hopefully more over time, and then we'll have to finish the feed through the NG tube.

Meg and I have already received some training on the medical equipment we'll have at home for Izzy, but still have another session this Friday.  I'll write another post on that topic later, when I have some photos to go with it.  For now, I'll leave you with some pics from the last week, including Izzy's first captured-on-camera smile.  Enjoy!

Meg and Izzy, practicing with her bottle-feeding

This is the first photo I have of Izzy smiling.  I can't stop looking at it :)

No paparazzi (aka Dad)!  It's odd that I now have a shot of each of our girls in this pose.  Did they not know, in utero, that they were being born in to a photographically-focused family???

Meg's mom, Sharon, came to stay with us for a week.  She hadn't seen the girls since they were first born and was so excited to see her "big" girls.  She helped Meg and me out a ton and even managed to dress up some of our windows while she was here.  "Thanks Grandma Sharon!"

After many, many suggestions to try it, we are now on the Moby bandwagon.  This thing rocks and is Maddy-appoved!  It truly does have mystical powers that can lull even the crankiest of babies to sleep.

Madelyn, catching some Z's after a big bottle

Sophia, getting some tummy-time on the mat.  "Hey kid!  Why don't you try lifting that head up?"

Before we can bring Izzy home, her primary caregivers need to graduate from the NICU with training on how to feed her, as well as how to insert and remove her NG tube.  I stopped by the NICU today, but forgot to let them know I was coming and I missed my window.  I didn't even get to hold her because she fell asleep while she was eating and was completely knocked out!  Nurse Erin told me she hasn't been sleeping exceptionally well during the day.  There was no doubt that she was off somewhere in la-la land and I wasn't about to bring her back from that trip.  Erin had to hold her there for an hour like this!  I love our nurses :)

Thursday, December 8, 2011

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 :)

Monday, December 5, 2011

The Nanny Trials and Help From Friends & Family (by Meghan)

Monday, November 28th: It's 6am after my first night with the nanny.  For the moment, the girls are quiet, I'm rested, and we're heading together, full speed ahead, into our first day without any help.  I might need more prayers than Isabelle today. :)

Saturday, December 3rd: The good news is I made it through that day wonderfully.  The bad news is, after one night, that nanny never showed up again. It's one week later and I'm just now getting to finishing this post!  We have no idea what happened to the nanny.  After one night she stopped communicating with us altogether and even blocked my phone number.  Jeremy and I were left unexpectedly to take care of them on our own 24 hours/day without any help.  Thank goodness for Sarah, who showed up on Thursday to relieve two very exhausted versions of Jeremy and me.

It's been a whirlwind since she arrived!  Thursday evening she was just in time for a nanny interview at 6.  We decided to hire Amanda pretty much on the spot because she had experience with triplets and could start the next day.  Honestly, I think she had the job when she said she'd start tomorrow.  That was music to our exhausted ears. :)

Sophie (lower right) is obviously very happy to see Sarah!

Sarah, thank you so much for coming to see us!

On Friday, we had a home visit with Early Intervention at 10 am and a doctor's appointment 1pm.  With Sarah's help we wanted to squeeze in a trip to the NICU too.  The sad part about the lurch we were in without nanny coverage, is that I didn't get to see Izzy for 6 days.  Jeremy stopped on Monday to see her after work because we thought we had a nanny showing up to cover the night shift.  The rest of the week he came home as quickly as possible after work so I could go to bed and wake up in time to spend the night taking care of the girls and allowing him to get a good night's sleep for work.  The good news is we made it, but I can't help but think I'm getting used to having an extra set of hands around again and it makes me fearful for that day in the near future when I'm on my own yet again.  At least, I can now depend on some help at night.  For a girl who doesn't like to accept help and likes to do things on her own, raising triplets is a rude awakening.  :)

There are so many updates with the girls since we haven't written in forever!  Let's start with Sophie and Maddy who are changing every day!  They are both doing very well at home.  As you know Maddy's reflux has been so bad it was keeping her from gaining weight.  At our last appointment, she had gained 7 ounces in one week, weighing in at 6 lbs. 6 oz.  Due to the holiday, we had a week off between visits.  After 14 days, Maddy gained 13 oz and now weighs 7 lbs 3 oz.  Sophie gained 18 oz weighing 8 lbs 4 oz. We can feel them getting heavier and heavier every day.  Sophia is getting lots of baby chub on her body and it's making her cuter and cuter!  Both girls have started smiling in response to silly faces and high pitched voices.  It doesn't happen all the time yet, but we an usually get at least one smile/day from each of them.  What a great moment that is, one we've been anxiously awaiting for 3.5 months!

Sophia, celebrating a Penn State touchdown in her sleep

Meg, and (almost) all of her girls

Baby Madelyn, sleeping soundly

Each day is truly a science experiment.  We decreased Maddy's volume to see if she would spit up less.  That worked for about a week.  Now she's wanting to eat every 1.5 to 2 hours, so we tried to increase her volume a bit again.  Last night she had a lot of spit up, but she didn't take any of the extra volume so we try to rack our brains to figure out which variable change may have caused this.  The trouble is keeping all other variables constant in order to isolate the problem.  Some days we're sure breast feeding is better; others we're sure bottle feeding is better for her.  All I know is I need to go back to grade school and tell the kids in Mrs. Heasley's science class that the stuff they're learning about scientific method actually will be valuable some day! :)

Now on to Isabelle who's taking great steps forward while having some setbacks at the same time.  The biggest problems recently have been Anemia, bottle feeding, and liver damage.  Izzy's crit levels have been slowly dropping and dropping, meaning she was becoming more and more anemic.  Luckily, she wasn't showing any signs of being sick from it before they decided to give her another blood transfusion.  The next day her crit levels were back up at 38 (anything over 30 is considered not to be anemic).  Her color was better, her breathing slowed down to a better rate, and they tried to take her off the oxygen altogether.  As of today, she's been off O2 for almost a week and doing great, a huge leap forward for her!

With one big hurdle down, the next goal looming overhead was getting off the TPN.  This past week the girls were 3 months old, which is a long time to be on TPN.  It's definitely taking it's toll on her liver.  Her direct billiruben level was hovering around 2.2-2.4 for the longest time. If this number gets too high it could be a sign of severe liver damage.  On Friday when I asked, her level was up to 3. While 3 isn't horrible, anything over 2 is sign of some liver damage.  I decided to express my concern to the doctors and try to ask some questions to get an idea of how bad a 3 really was.  I also don't really understand why it seems to be continuing to increase even though they're decreasing the TPN and increasing her breast milk daily.  As a result of my questioning, the neonatologist called a GI specialist.  They've decided to put her on medication to help the direct billiruben  level and only keep her on TPN for 20 hours a day, giving her a 4 hour break each day without any TPN in her system.  After a few more days with that plan, she was able to increase her volume enough to get off the TPN.  Now that it's disconnected she should be able to have her PICC line out very soon.  They'll just leave it in for a few days to make sure she does ok off the TPN.  Slowly but surely, her liver should begin to recover.  Thankfully, the doctor expects a full recovery.

The biggest issue for her now is something the speech pathologist calls Oral Aversion.  Due to all the negative stimulation around her mouth (suctioning, breathing tubes, NG tubes, repogols), Izzy doesn't want anything in her mouth.  Also, due to all the NG feeds, she doesn't associate being full with putting something in her mouth.  So, unfortunately, at this point she has forgotten how to eat from a bottle and has no interest in learning how to do it again. There are exercises we need to do with her before every feeding to try to give her positive oral stimulation. The nurses do it with her when we're not there, which is most of the time.  There aren't many times during this process when we've gotten down, but this news is heartbreaking.  Some kids never get over this.  They just won't eat.  We can't help but feel so bad for our little Izzy.  She has yet another huge obstacle to over come. From what I've read, it seems unrealistic to hope for her to move past this while still in the NICU.  Most likely she'll come home with the NG tube and need in-home nursing, speech, and physical therapy.  All of which I'm fine with, I just worry about her weight gain with all these eating issues.  As of yesterday she was 5 lbs 13 oz, which puts her 2.5 lbs behind her identical twin, which seems to be a gap that continues to increase instead of narrowing. When I went to the NICU yesterday, they told me they're worried that her troubles are from aspirating instead of oral aversion.  She is starting to eat a few bottles each day since last week and she does take her pacifier, but they are concerned at the amount of choking she does when she's eating.  If she's aspirating, they'll stop oral feedings together and only feed her with the feeding tube because she could get pneumonia.  She'll have a swallow test with barium on Monday.  After that, we'll have a better idea about the medical plan for her going forward and when she'll be coming home.  We've heard rumors that she'll be home for Christmas!

The hardest part about all of this is not being there for Isabelle.  We try to get to the hospital daily, but it's really difficult with trying to take care of the other girls, too.  It's especially difficult for me with breast feeding.  Also for the next few weeks we have limited help during the day, which adds a new challenge.  On Friday after speaking to the doctor, they started to take care of her anemia, allowing her to get off of oxygen, and started to treat her liver issues.  Maybe this isn't the case, but it really feels that, had I not been there questioning the levels and asking for information, the doctors would not have taken any action.  A new doc was on rotation and she wasn't familiar with Isabelle's last few weeks of data. My questioning led her to take a good look at her history and make some pretty big changes for her care.  It is amazing to me how big of a role parents play in the NICU roller coaster.  It's also very frustrating and heart breaking when you feel that you can't be there.  Why did the docs wait until I pushed to treat the anemia?  Why did they wait for the GI consult, to stop TPN for 4 hours/day, and to add medication to help with the liver damage?  I was able to be there every day discussing their care when we were all there together.  I feel so guilty about Izzy being there, often times without her mom and dad and sisters, left on her own to heal.  The only saving grace is the amazing nurses that have all started to bond with our long-term NICU visitor.  We're especially thankful for Melissa who takes time to hold her and color Christmas pictures to decorate her crib and track down swings and other baby toys to entertain her, but the reality is it's time for her to come home and bond with her family.  Too bad Melissa can't come home with her! :)

Grandma Jo Anne just wrapped up a two-week stint at our house.  She has to go take care of her family for a few weeks, then she's coming back for the last couple weeks of December.  Thank you for all of your help!

Uncle Sean, stealing some cuddle time with Maddy

So, how does this work?  I don't think the wishbone ever broke like this before.  I say, we both get our wish :)