One-Year Adjusted Stats (by Meghan)

***NOTE***  
Meg began writing this post a month and a half ago and we're finally getting some time to finish it.


November 4th marked a very important day for our little ladies.  As of now, they are one year adjusted. At this point last year, we had 11-week-old preemies who were just passing their due dates. Sophie and Maddy were at home and Izzy still had a tough road ahead in the NICU with 1.5 months out of her 4.5 month stay remaining.

Today, you'd almost never know our girls were preemies, except for some delays in milestones. So, let's get down to the stats!




Sophia:
Weight: 23 lbs., 75th percentile
Height: 30.5 in., 85th percentile

Our little spitfire is getting faster each day. She walks everywhere and climbs on everything. Falling off is no problem her her.  Usually, she just gets up and tries again. She says baba, mama, dada and a whole bunch of other sounds. She's learning to sign.  Currently, she waves hello and goodbye, signs "all done" when she's done eating, shows "so big", and holds up her pointer finger when you ask her how old she is. She is also learning the names of many objects.  She knows who dada and mama are as well as the words ball, piggy, kitty, baba, book, and the phrase "turn the page."  Every day brings new learning!



She already loves shoes.  I think I need to find her a new passion, like cleaning the dishes.




Definitely the most jealous of the three, so far


Has huge smiles!



Madelyn:
Weight:  21 1bs., 50th percentile
Height: 30 in.,  80th percentile

Maddy is growing and learning every day, too. The therapists working with Maddy believe she has sensory processing disorder (SPD).  Because sensory processing issues are part of autism spectrum disorders we've been very worried about her.  The pediatrician was also concerned when we shared our observations of her behavior at home.  He advised that if she didn't start "coming out of her world" a bit more by the time she was 18 months adjusted, then we would start to worry about the autism spectrum.  Although kids with autism spectrum disorders have SPD, kids can also have SPD and not be autistic. Preemies with NICU experiences have increased risk of having a sensory disorder.

The great news is that over the last few months since our one-year check-up at the pediatrician, Maddy seems to be doing a lot better. She's not yet communicating with gestures like waving, but she is starting to communicate her needs and wants to us through crying.  She's also showing a much greater interest in being near us. Earlier, she would play for hours and never notice if we were in the room. She wouldn't look when we called her name.  Now if we're in the room, she sees us, drops her toy immediately, and makes a B-line toward our legs. This is great news and leads us to believe she does not have an autism spectrum disorder just a sensory processing issue.

Maddy had her re-evaluation for developmental therapy last week at which time it was determined she could benefit from adding this to her weekly routine. So now she gets speech therapy, occupational therapy, physical therapy, and developmental therapy. As you can imagine we're busy, busy, busy!

Another celebration for Maddy is that she's walking! At just 12 months adjusted, two of our little ladies are walking. I still can't believe it sometimes!  Although she's not as stable as Miss Sophie yet, she's practicing all the time and getting better every day. She is so cute.  I often hear her giggling as she's taking steps and trying to keep her balance. :)

Funny, I thought she was going to have blue eyes


Since they're the only ones walking right now, Maddy and Sophie have a blast playing together, especially when they're playing "I get you!" and chasing each other around the room


By the way, we've since moved up to the big bathtub in our bathroom





Isabelle:
Weight: 20 1bs., 35th percentile
Height: 28 in., 15th percentile

Izzy has made leaps and bounds since our last post. She's crawling, pulling to stand, and cruising on the furniture!  Just a few weeks ago, she wasn't crawling yet and look at her today. Every time she pulls herself up she looks to us for celebration, so now we're clapping all the time.

Although physically she's a bit behind, her cognitive development is right on track.  She's waving hello and goodbye and clapping and she's starting to match words to objects like mama, dada, and kitty.

Such a pretty lady








I can't remember what I said, but it sure was funny




Also, we have had lots of small graduations recently and they're definitely worth celebrating!

1. We packed up the bottles and Sophie and Maddy are using bottles.
2. Izzy is off of oxygen! Yahoo!
3. The cranial bands are done as of this week and they made a huge difference for both girls. 
4. Maddy and Sophie are self-feeding regular table foods.
5. We're down to one nap.
6. Did I say two out of the three are walking already? :)
7. Maddy is done with reflux and reflux medicine!

Until next time...

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 :)

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 :)

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

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).

Forgot To Post The Bath Video!

Now, this video is truly cute, but it's also six minutes long.  We're not bathing experts by any means, but Meg seems to have it down cold.  So, I thought I'd share it in case anyone needed a quick video lesson.  The few crying parts are pretty funny, mostly because it's now something between a realy baby cry and cat that just had its tailed stepped on :)