Leap Day Update on Izzy (by Meghan)

Well, it's Wednesday. It's hard to differentiate the days at this point. It feels a lot like when we were in the NICU. Each day that goes by it starts to feel more and more "normal.". We've gotten into a routine: I sleep here and spend most of the day here until the evening when I head home to see Jeremy, Maddy, and Sophie. Jeremy stops by after work to see Izzy and heads home with me so we can have a little bit of time together. Once the two girls at home get to bed, it's back to the hospital. It amazes me how dynamic we are making adjustments as needed and doing what we need to as each day comes. People keep telling me we're great parents, but I think we're just like any other parents would be, waking up each day and trying to do what's best for your kids.

I had a little break from hospital land today. Our favorite NICU nurse worked last night and met me at the coffee shop. It was nice to have some time to talk and hang out. She reminded me how some preemies can die from this. Izzy's nowhere near that bad (so mom, don't start telling everyone she almost died ;), but here we are, yet again, thankful for another miracle.

All right, getting to the update already! Izzy is doing great! It's just like in the NICU. We take two steps forward and one back, but she does make progress slowly over time. After my update yesterday about weaning the oxygen and starting feeds, we had some setbacks. They actually had to stop feeds and put the oxygen back up because she wasn't tolerating either adjustment.

Today things are looking up again. Not only did they start feeds again last night, but she was recently increased and seems to be tolerating it. She's only eating about half of her daily volume so far but she'll keep increasing with time. Her oxygen has been weaned from 65%-45%. Once she's down under 40% they'll begin to wean the liters of flow. Currently she's on 6 liters/hour, much higher than her typical 0.20 liters/hour at home. So we've still got a long way to go, but there's also a lot to be thankful for, too.

Here are some pics I've taken and a couple of videos. In this first video, you can compare her breathing from the beginning to how much it had improved through yesterday. She's a much happier baby.



Izzy's wubbanub taking a dip in sweet-ease to make sure she's getting some positive oral experiences while at the hospital



A sleeping angel




In this next video you can see her cough is starting to get worse. The nurses said this would happen as the stuff in her lungs starts to break up. She actually turned blue again today during a coughing spell. Thank goodness the nurse was here when it happened!



Here's Izzy saying thanks for all the prayers! I'm getting better slowly but surely!

Deja Vu

Seriously, I feel like I just wrote this post.  Considering we're talking about Izzy here, and these photos almost look like Sophia, I think I already DID write this post.  Yes, it was just last week when we were in the hospital with Sophia.  It turns out that all of our babies ended up getting RSV and all had to go to the hospital despite our best efforts to keep them safe and relatively quarantined. 

Izzy had a pretty rough time last week.  My mother and aunt came to stay with us for a week and my mom offered to take care of Izzy at night.  Izzy had usually been a pretty decent sleeper since she was getting a continuous feed for eight hours at night.  Strangely, she was very irritated by just about everything. 

I don't remember her getting a fever and she never really coughed profusely.  She just looked like she was really struggling to breathe.  You could look at her chest and easily the retractions.  Her respiratory rate jumped fairly high and we had to turn her oxygen up from .2L to around 1L just to keep her from desatting below 90%.  Once she began having difficulty eating this past Saturday, we decided that we didn't want to be the ones monitoring her and deciding how bad was bad enough.  So, we took our ped up on his offer, called him when we were feeling extremely uncomfortable with her condition, and he called the hospital got us a bed in the pediatric unit.

It's always good to go with your gut as a parent.  We've learned that over the last nine months, even when the girls were still inside.  Since she's been in the hospital, she's worsened to the point where they're giving her breathing treatments ever few hours, they're giving her lasix to help get rid of some of the fluid build up in her chest, and they've upped her oxygen to 2L.  Meg said that at one point, when they switched her over to the high flow cannula, she desatted to 50% and started turning blue!

I went to see her and Meg this afternoon at Edward Hospital.  She finally looked comfortable, which is what you want for your baby girl.  She was the nurse's only patient, so she was receiving a lot of attention.    It was much different than last week's experience in the Edward "Dungeon" where Meg was basically providing the majority of Sophie's care in between nurse visits that were few and far between.  Her eyes were open, but she couldn't muster the strength to smile.  She was swaddled in snugly and her pacifier wrapped in tightly.  Visibly, she appeared better, but I knew better.  Much to everyone's satisfaction, she finally stopped screaming her head off and was able to catch up on some much needed rest.

The docs and nurses are pretty confident that Izzy may get a little worse before she gets better, so we're buckling down for the storm.  I think Grandma Jo Anne will be driving over from Erie later in the week to help out for a long weekend.  Obviously, we're hoping that Izzy makes a fast recovery and that there is no long lasting damage from this sickness.  Only time will tell, but if we've learned anything about Isabelle, she's as tough as nails and will fight through everything to be here and healthy!



I had to do a double-take to make sure this wasn't Sophia.  The belly scars give it away though.






As a side note, I've never really watched two or more of the girls for any extended period of time without Meg or some other help.  Sunday was all about me getting my chance to get a glimpse of what Meg goes through on a daily basis with Sophie and Maddy.  It was tough and fun just the same.  It's really difficult to keep two babies happy and entertained for most of the day.  The feeding wasn't too tough, I just kept them slightly staggered with their start times.  However, the daily evening crabiness was pushing me to my limits.   I think the last feeding time saved the day!

Lastly, the girls are the most fun in the morning.  It's the time of the day when they're the least tired and the most likely to have tons of fun and show it with their big huge smiles.  I love these girls!  They made it pretty easy for an exhausted dad.

Recovering At Home

Today's post is going to be rather short.  The most significant update is that Sophia and Meg came home today.  Today is also important because our babies are 6 months old today!  I can't believe they're getting so big, but it only takes a glance at some of the photos below, and a quick look back at when they were in the NICU, to realize how far they've come.

Now, back to Sophia.  She's not 100% better, but she is improving and the docs didn't feel as if she needed to be on oxygen any longer.  She still has a horrible cough, to the point where she actually spits up when coughing during eating because she's putting so much pressure on her stomach.  We're still giving her nebulizer treatments every three hours when she's awake, which helps, but there's still a lot of gunk in there.

It's so great to have them both home again.  However, we're still exercising major caution in trying not to cross-contaminate and get the others sick, as our ped said she could still be contagious up to two days after her symptoms go away.  She's not her normal self yet, but you can see her sneak in a smile every once in a while.  We're giving her lots of love and plenty of rest.  When I was holding her earlier this evening, she whispered in my ear that she was looking forward to her play time as it appears that she just found her toes while she was in the hospital!

Being a trooper during x-ray time


Wearing her Victoria's Secret hospital gown


Someone is not happy with the nasal cannula.  "That's for babies!" she cried.








Vibration treatments on the back


The Cage





Finally, a little rest



Miss Shallee dropped in to give Meg a little relief.  Mom needs to shower too, right?


While I'm sure they could've thought of a better place to spend time together, there was much bonding going on over the last several days


Home again, wish ashes on their foreheads

Were We Overreacting?

What started off as a very normal Sunday afternoon turned in to anything but.  The girls all had their late-morning bottles and were getting some good shut-eye in separate rooms during their afternoon nap.  Maddy was the last to wake and we soon found out why.

Now, Maddy is normally a little fussy when she wakes up because she's not one to let anything come between her and her bottle.  Today was different, however.  I didn't notice it at first because she was wrapped in a blanket, but she was hot.  I'm not talking warm-from-a-nap-because-I-was-cuddle-wrapped-so-nicely warm, but hot.  I changed her diaper which, usually, gets her excited because she knows a bottle isn't too far off in the distance.  Instead, she proceeded to grunt continuously.  It wasn't a heavy grunt, but a bunch of little subtle grunts, strung together at the end of every breath.  It was very un-Maddy-like, which was our first clue something was wrong.  Our Ped always tell us ignore half of what you hear and pay attention to what you see.  Well, we saw a baby that was in obvious discomfort.  All was soon verified by 102.6F degree temperature.

We called our pediatrician and, fortunately, while we expected to get through to their after-hours call service, were pleasantly surprised to actually hear our doc's voice on the other end of the line.  He prescribed 2.5ml of children's tylenol (the new packaging) every four hours.  He also told us to count her breaths.  If it was over 60, then there was probably reason for concern.  At one point, she was up to 78 and it seemed a little labored.  Of course, he couldn't diagnose it as RSV over the phone, as there are dozens of cold viruses out there, but he did seemed concerned.

Several hours later, her fever was gone and she was exhausted.  Her temperature was down to a much more pleasant 97.6F and her respirations were down to 37/min.  Still, our concern with RSV didn't end just because her fever had broken.  We knew with our preemie girls that contracting RSV could pose some serious risk to their short- and long-term health and could escalate quickly if, indeed, that's what she had.  We wondered if we were overreacting in considering whether we should take her to the ER.  In the end, our answer to that question was, "Who cares?"  This is the first time any of our girls have been sick since they've left the NICU and we're in prime RSV season.  Better safe than sorry with RSV.

In the spirit of full disclosure, I was reluctant, at first, to taking her to the NICU.  She seemed like she was recovering from whatever had caused her discomfort several hours earlier.  However, I did come around, especially when I thought about how bad I would feel if she did have RSV and we delayed taking her because of me.

We asked Mandi, who helps us out on weeknights, to come over a little early so she could take care of Izzy and Sophie.  We packed up the triplet trolley and rolled in to the Edward ER.  It was a little different than the 1000 times we parked in the parking lot so we could visit the NICU.  This time, we used the entrance for "special" guests.  There was no wait and with a little coaching from Melissa, NICU nurse turned friend, we talked them in to taking us directly back to our own room to avoid any unnecessary contact with additional germs.  What has more germs than a hospital, right?  Well, possibly, an elementary school I guess.

An unsuspecting Madelyn, enjoying getting out of the house


The ER doc, checking to make sure she didn't have an ear infection


So, they didn't actually test for RSV because they didn't hear anything in her lungs and her respiratory rate was in a good range.  The issue with RSV is it can turn into bronchiolitis and affect her lungs. That's what is dangerous.  She does have a virus and RSV or not, it has to take its course.  Right now, it's just a runny nose and fever, but it could migrate to the lungs over time. We have to hope that doesn't happen and that the others don't get it.  The doc said they probably would, but gave us pointers to try to prevent it.  Maddy should be better in 14 days or less, though I'm not sure she'll ever recover from the trauma induced by the saline and mega-booger sucker!

Maddy, thinking the worst was over


In the end, the visit to the ER put our minds at ease, at least temporarily.  It netted out to be a $100 saline administration and booger-sucking lesson.  As a bonus, we got to leave with a screaming baby.



Mom, consoling a very upset daughter

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 :)

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