Twice the Fun

***Note:  Today, Friday, 11/4/11, was the girls' original due date.  I can't stop smiling when I think about the fact that we've been able to spend almost two and a half extra months with them.  Obviously, I hate the fact that Izzy was born so small and needed to have surgery on her belly, but what an amazing experience we've all shared. ***

This post is a few days late, due to Izzy's big surgery earlier in the week, but I didn't want to miss out on sharing Maddy's check-out day from the Edward NICU.  After spending a whopping 70 days in the NICU, it was time for her to come home.  It was time to make room for other babies in the NICU and time for someone to occupy the space in the crib under the name, "Madelyn."

Picking up a baby for the second time from the NICU almost seemed routine.  It was sort of like, "Oh, you're here to pick up another baby?  Here you go.  Here's your baby."  Relatively, ho-hum if you ask me.  Now, that was what it was like on the surface.  On the inside, we were on the verge of exploding with excitement, knowing that we'd soon have two of our girls home together.

Madelyn left the NICU weighing a hefty 5 lbs 10 oz, a far cry from her original weight of 2 lbs 8 oz.  Also coming home with Maddy, will be prescriptions of both Prevacid and Zantac.  She'll be on very small doses, but it kind of stinks that she still needs prescriptions in the post-NICU era.  They really do help her though.  She has horrible reflux and it's extremely difficult to see her in so much pain after each feeding.  The worst is when the grunting comes with spit up through both the mouth and nose.  It doesn't happen every time, but it's always tough to watch when it happens, knowing that there's nothing you can do.  The nurses tried rice cereal, but its effectiveness wasn't conclusive and one of the docs, who we really trust, told us that recent research shows that it may not make any real difference.

During the last several days at home, she's been doing great!  She spits up from time to time, but she takes her medicine.  We try to keep her still after she eats for at least 30 minutes, and she seems to be thriving.

Maddy, right before she started wailing from being put in the carseat


We decided to try out our new Baby Trend "single" Snap 'n Go. It works great with the car seats we have and provided us with the ability to use the seats we needed for our triplet stroller (Peg Perego Triplette SW), without having to buy the expensive version of the PP individual stroller system.  This Snap 'N Go is pretty much just a frame that fits five or six of the major infant car seat manufacturers.  It's lightweight and is perfect when you have just one baby with you.  We did get the "double" version, too, so we could easily move around if Meg and I didn't want to push around the Peg Perego bus, but wanted to get out together.  These should both be pretty easy to resell on CL, so I kind of think about it like we're paying a rental fee during their use :)



Meg, peeking through the hole in the carrier cover




Buh-Bye NICU!


Our angel, lulled to sleep by the stroller




My aunt Kathy, now a great aunt, came to visit over Halloween weekend. Meg took her to the NICU to see Isabelle and Madelyn over the weekend, then she was able to help out and spend some time with Sophia and Madelyn at home.  "Aunt Kathy, come back whenever you want!"



Sisters - Maddy on the left and Sophie on the right


Meg, with two of her girls on Maddy's first night home

Saving Her Belly Button

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

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

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

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

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

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

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

Today, our Izzy got her bowels back :)

Izzy, getting some rest ahead of her big day


Getting prepped in the NICU




Traveling with her entourage


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




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


Meg, talking to Nurse Pam after the surgery


Our sweet girl, recovering after a long day

Big Day on Tuesday (prayers needed)

I'm posting a quick update tonight just to let everyone know that Maddy finally made it home and is enjoying being reunited with Sophie.  They're both extremely excited about the idea of having Izzy home to join them.

On that note, Izzy takes a giant step forward tomorrow, Tuesday, with, what we hope will be, her final surgery.  We just found out this morning that Dr. Liu is ready to put her bowel back together.  She's not as large as we hoped she'd be for the surgery, but she's only an ounce away from where he wanted her, at a minimum.  She's dumping now and her stoma is sticking out to a whopping 5 cm.  It's time to put our baby back together.

We're expecting the surgery to begin somewhere between 9:00-11:00am CST and are expecting it to take about 60-90 minutes.  She'll have to be intubated again, as she'll be heavily sedated.  We're expecting nothing but the most positive results and would appreciate any prayers you can send our way.

I'll try to write an update as soon as she's out of surgery for all of those friends, family, and concerned blog followers.

Also, I have lots of pictures from Maddy's trip home and her first interactions with Sophie in their nursery!  I'm too tired to process them tonight or write any more, but they'll be up soon.

No Sweat

Is this all?  This is nothing.

Wait.  There's still more of them?

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

Maddy, sleeping through her last days in the NICU


A proud dad, working on his rarely used biceps


Maddy, with those yucky, green vitamins


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

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


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

Sophie, enjoying some time on the Boppy


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


Perfect example of post-feeding cuddling to keep her upright


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

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


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


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

Pull over. We have a blow-out!

No, not a tire, but a baby blow-out!  For several days, it had seemed as if Sophia was never going to get settled.  She was irritable and gassy.  Well, that all changed on Friday.  As if someone had pushed the lever and opened the floodgates, Sophie exploded in a disastrous, albeit enjoyably relieving, mess.  Her seemingly impermeable diaper finally revealed it's true porous self as the eruption escaped from the front, back, and sides.  I'm not gonna lie, it was disgusting.  I never understood how some little being that barely weighs five pounds could produce what seemed like five pounds of waste.  There was no way to just change the diaper and move on.  This required the full bath treatment.  Seriously, it was up her chest on the front and between her shoulder blades on her back.  Yuck!

You don't have to tell these parents twice.  We took the advice of so many that responded to the last post and decided we'd use the pink tub from the NICU and give her a bath in the sink.  MUCH BETTER this time around.  We turned on the faucet and played with the temperature until the green light on the temperature turtle showed us we were in the sweet spot for bath time.  While Meg washed her hair, I actually ran the water right on her belly.  It was like spa day at Chambre des DeBauche!  She looked like she was in heaven.  WAY different than poop time in the pool last weekend.  I decided against posting any proof as to protect the innocent :)

Sophia, post-spa treatment


As you may have guessed by now, due to my lack of excitement around bringing another baby home, Maddy had an "episode" on Friday, so the go-home clock was reset. If there's a silver lining to having to spend another week in the NICU, it's that we get to practice just a little longer with just our guinea pig Sophia.  She's still having a lot of trouble with reflux.  Also, I'm going to go ahead and deem her "the fussy one."  Who knows?  She could prove me wrong.  I absolutely hope so.  So, for now, we're planning on bring her home this Friday.  If she has another episode this week and her go-home date slips to next week, there's a high probability they'll send her home on a monitor.  It's not the worst thing that could happen, but her random episodes are the only things that are keeping her from coming home at this point.  Plus, the NICU won't keep them past their original due date, 11/4, if it's just a matter of monitoring her breathing--that becomes our job. 

Maddy, patiently waiting for mom and dad to rescue her from the NICU


Izzy is doing very well. She's up to 3 lbs 13 oz. She had minor surgery this past Wednesday to get her stoma under control.  Basically, it kept creeping out to the point that it measured 3.75cm, which is pretty long if you measure it out.  They did have to put her under anesthesia, so that's always a little scary and they also had to intubate her, but immediately took it out once the surgery was over.  She still has (hopefully just) one surgery ahead of her to re-connect her intestines.  The story is still the same though.  The goal is to get her to grow as large as possible while balancing her liver stats because of the TPN with how much food she's able to digest with the portion of intestines she has between her stomach and stoma.  If she stops growing, starts dumping, or shows signs of liver distress, they'll perform the remaining surgery.  She's been such a fighter so far, so I'm thinking she'll continue to work through whatever she needs to so she can grow as big as she possibly can.  It does mean that she'll most likely be in the NICU until sometime between Thanksgiving and Christmas, but it also means a higher likelihood of having a successful surgery.

These girls have no idea how much they're loved.  I can't wait to get them home!

Izzy, checking out her Nana (my mom)

Bathtime Surprise

We're starting to settle in...a little.   We're finding ways to get more sleep, mostly because we're trying to divide up the time so everyone isn't up all of the time.  Having my mother here the last few days has been a great help.  I took her to the NICU so the nurses could show her how to feed the girls since we haven't perfected the technique yet.  If you looked at the burp cloth after a feeding, some might actually think I was intentionally trying to feed the burp cloth instead of Sophia.  I'm not sure how so much of it ends up coming out the sides of her mouth, but the nurses do a much better job, so I thought they should show my mom the "right" way.

My mom has been tremendously helpful with meals and with bottle preparation and clean-up.  She's also taken over some of the transitional shift times like early in the morning, when Meg needs to catch-up on the sleep she missed at night and when I need to get ready for work.  She's also staying up a little later to give Meg a few hours to sleep on the front-end of the night shift.

My mom with Sophia


Eventually, we're going to get our girl to sleep at night and be awake during the day, but the NICU is kind of like a casino--there's constant stimulation and you have no sense of day and night--so, she's mistakenly got them turned upside down and doesn't yet understand that babies (parents) need to sleep between 11:00pm and 5:00am.  She'll get there though.

Over the last couple of months, the NICU has been giving the girls a bath on Saturdays and Tuesdays.  We took advantage of the coaching and started doing it ourselves a while back. It was our turn to try it at home.  Wow, did we fail miserably!  Our biggest lessons learned were:

1. Leaning over the normal bathtub to reach in to the baby bathtub and give a bath, kills your knees, even with a towel.
2. There's not enough room for two people to kneel next to the bathtub in the girls' bathroom without straddling the toilet from the ground with your legs (not cool when it's you that's doing the straddling).
3. Giving her a bath in the NICU was much easier than doing it at home.
4. Babies will not hesitate to poop in the water (I mistakenly thought they just peed in the water).
5. We need to try harder and be more prepared.
6. Babies will not hesitate to poop in the drying towel.
7. Babies will not hesitate to poop in the SECOND drying towel.
8. They look adorable when they're super clean.
9. You can give a 37-weeker a mini-mohawk when her hair is still wet.

 Well, maybe we didn't fail.  Heck, she's still alive isn't she!

Sophia, with a " Who, me?" look on her face after dirtying up the tub and two towels


One of the issues we're struggling with is how much tummy time we give her.  She definitely seems to be struggling with gas/poop and is much more irritated when we have her flat on her back or slightly inclined in the bouncy chair.  Our pediatrician told us it has to do with preemies at this age not being able to release their butt cheeks when they're trying to pass gas.  Apparently, they don't know that you need to let the cheeks go to let if flow.  She gets super tense and actually holds everything inside.  She'll learn. 

We noticed when giving her some tummy time, that she seems way more comfortable.  Maybe it's because her butt is up in the air and the gas is rising to the highest point to get out.  Whatever the reason, she loves it.  The dilemma we have now is that the NICU told us that they're too old to sleep on their stomach.  When they were younger, ~32-35 weeks, the nurses put them on their stomach to help with the reflux that both Maddy and Sophie were having.  There's a big campaign led by the NICHD called "Back to Sleep," which is meant to remind parents that you can reduce the risk of SIDS by placing healthy babies on their backs to sleep, not on their stomachs.  It's just our luck that our babies stay up all of the time when they're on their backs and really only seem to get restful sleep when they're on their stomachs.

So, Meg and I are going back and forth, weighing the risk of letting them sleep on their stomachs with the risk of them not growing because their not getting any real rest.  For the last day and a half, we've been putting Sophia on her stomach when we're awake and someone is watching her.  At night, she stays on her back and no one gets any sleep.  Meg took Sophia to her first visit with our new pediatrician yesterday and both the nurse and our doctor said that it was all right to use a movement monitor called Angelcare to safely allow her to sleep on her stomach and give us peace of mind.  I'm going to do a little more research before I feel comfortable enough to actually try it, but if it really does work, I may get my wife back!

Meg, "watching" Sophia in the morning.  The best moms can see with their eyes closed :)


The nurses decided to try and ween Maddy off of her last little bit of oxygen yesterday. When we called in to the NICU later in the evening, she was still handling it just fine. Meg is going to visit with Izzy and Maddy a little later this afternoon and, if Maddy is still off of the oxygen, they'll probably start talking about a plan to bring her home within a few days.  She's been episode free for quite some time, so there's nothing else stopping her at this point. Then we'll have TWO babies at home, possibly by Friday!

Dr. Liu called us yesterday to talk about next steps with Izzy.  Right now, she weighs 3 lbs 8 oz.  Ideally, he'd like her to be around five pounds before re-connecting her intestines, but if she a) starts dumping again or b) starts having trouble with her liver, he'll do the surgery sooner, but really wants her, at the bare minimum, to be at least two kilos or ~4 lbs 6 oz.  Also, the surgeon and our NICU docs really want to ween her off of her oxygen a little more before performing the surgery.  Lastly, they still need to do a one-day analysis on the bottom section of intestine, between the mucus fistula and the rectum, to make sure that the three perforations that were allowed to heal have all done so.

I can't help but look at these girls everyday and think about how close we came to losing them and where we would or wouldn't be right now if we had listened to the doctor at CHOP who told us our girls were too sick to save.  Honestly, it infuriates me, so I try not to think about it too often.  I just hope that other families don't lose their babies because they're not confident enough to go with their gut and get a second opinion.  I'll get off of my soapbox now, it just amazes me every time I look at them and reflect on how far we've come.  We are truly blessed.

Up All Night

Yeah, you knew this was coming.  It's about 3:00pm in the afternoon after our first night home with Sophia.  Mentally, I'm not all here, but I just had to document the complete and total exhaustion I feel after our first night at home with a baby.  I realize that last night was just an appetizer for the full entree that lies ahead when everyone graduates from the NICU.  We'll get better at managing our nights, but I just couldn't help but wake up every 10 minutes, each and every time she made a sound.  I kind of felt like a celebrity stalker, continuously staring at her to make sure she was getting enough oxygen.  Plus, I'm a light sleeper and the quietest noise can wake me.  It was almost as if she was sitting right next to my head just waiting for me to close my eyes so she could yell in my ear and wake me back up again.  All that said, I think Meg and I did a pretty good job as a team last night.  Though, now, the thought of having the three of them home at once, all needing something from us (possibly at the same time), is quite terrifying. I wouldn't miss out on it for a second :)

Sophia, finding a new resting spot


Cousins Kelly and Keegan, checking out the new addition


My mom, arriving at our house for the first day of a one-month stay


I can't even begin to describe the feeling of having one of my girls at home where she belongs.  I'm not joking when I say that I've been checking every five to 10 minutes to make sure she's breathing.  It was like watching the pot to see if your water is boiling yet.  I'm already feeling a little more relaxed today, but my brain pretty much went into hyper-observation mode when we were at the hospital yesterday and the nurse said, "The leads are off.  She's all yours!"

Sophia, lead free!


Speaking of the hospital, it was a pretty sad and exciting moment. It's extremely tough taking home one of your babies and leaving some behind. You have such mixed emotions--the excitement of bringing your first baby home, conflicting with the guilt of leaving the others behind. You think to yourself, "It's not fair. They should all be together, all of the time!"




Meg, getting some practice lifting a full car seat in to the Triplet Traveler--her car of choice for the next several years (or more)


Baby securely latched into the car seat base. Check!




Before we took Sophia home, we decided to take advantage of her new-found freedom and gave her some bonding time with Maddy. They began their date with a visit to the milk machine and followed lunch up with some...

...cheering, and some...


...boogey dancing, and some...



...hard rock head banging, and some...


...thoughtful conversation, and finally, some...


...quiet time.


Sophia has had enough.  She's praying, "Get me outta here!"  There's no argument from Maddy.


Let's not forget about Izzy.  The docs have stopped her feedings with milk.  She finally began dumping, but still only weighs 3 lbs 3 oz.  The surgeon, Dr. Lieu, wants her to be much bigger before reconnecting her intestines--potentially five pounds.  They're going to start feeding her with a kind of "pre-digested" formula to see if she's able to soak up more nutrients without having to work as hard.  She's still on the nasal cannula, but she's on a very low setting as well.  We're thinking she's going to be in the NICU at least until Thanksgiving, but hopefully she'll be home before Christmas.







Isabelle is definitely daddy's cutie :)


Maddy is still having some trouble being weened off of the last little bit of oxygen. She's on the lowest possible setting, but just doesn't seem to want to let it go. They'll keep trying with her and, as soon as they're successful, will be sending her home a few days after, assuming she's still "episode-free!"