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

We Tried To Avoid It

We tried to avoid it. Really, we did, but we were unable to keep our girls from getting RSV. Well, at least two of them.

Sophie and Maddy were really starting to look and sound fairly awful on Thursday. We had a suspicion that their cold was more than meets the eye, so we took them up to our ped. I hate being right sometimes.

Even mom needs a little rest when taking care of sick babies.




Fortunately, they've been on Synagis for the last few months, so the effects of RSV shouldn't be as severe as they could be otherwise.  So far, that's proving true...for the most part. Sophie sounded really awful this morning, so we hooked her up to the pulsox machine they delivered for Izzy a couple of days ago. Her oxygen saturation level was below 90%, so we started panicking a little. It didn't help that she threw up almost half of her bottle when she was trying to cough. We made another last-minute, emergency appointment at the doctor's office, trying to stave off another trip to the ER. The doc said that Sophie was worse today than she was on Thursday. So, they gave her a nebulizer treatment and sent us home with a prescription for more every four hours.

This is our first time with the nebulizer. If you've never seen it, or its results, it's wonderful with the side effect of making your baby cry and her face red, at least temporarily. We still have to wait this virus out, but I'm hoping it gets easier with each successive treatment.














After the neb treatment, Sophie relaxed enough to eat her bottle and still had energy left over to take another go at solids. Today's special--pears! Izzy still isn't ready to try solid foods yet, but we're working on Sophie and Maddy.





After we cleaned everyone up, I only made it about one and a half books in before I ended up with this.



We're going to do our absolute best to try and make sure that Izzy doesn't catch this. Her lungs are already a little weak and this would be the last thing we'd need to have happen to our smallest baby.  To help, we've created zones around the living room for each girl.  We were just shy of taping everything off, but didn't stop short of having assigned seating areas when holding each girl.  We're even changing their diapers on the floor next to their bouncy chairs.  If you've never taken care of sick triplets, heed this advice:  Avoid it at all costs!

Looking for a Master Carpenter

***On a side note, Meg and I were playing with the look of the blog (Meg mostly), as she was really getting sick of the one I chose almost a year ago.  Plus, I really wanted to make the photography a larger portion of the blog, that is when I actually have time to process our photos, and giving them just a portion of only the middle column just didn't seem fair.  I'm not 100% sure I'm satisfied with the look, but we would definitely appreciate any comments/criticism on the new format, as we're always open to suggestions.  It's all about you guys, right?  :) ***

Now, back to the real reason for the post today.  I'll warn you that today's theme is not a new one.  I'm quite sure we've expressed our concern (read complained) with regards to the strategy around Isabelle's short- and long-term treatment plan, or really, lack thereof.  Meg and I talk constantly about how we feel like we're the team leaders, responsible for making the overall decisions, after taking input from the team specialists.  Maybe that's supposed to be our job as parents, but to be honest, we feel woefully under-qualified to be making those types of decisions.

What makes it even more frustrating is when certain healthcare practitioners make comments like, "Oh, I can see you've been consulting with Dr. Google."  Heck yeah we've been consulting with Dr. Google.  If we weren't then we'd be completely in the dark about the types of decisions that we'll need to start considering if Izzy doesn't make improvements and is still on her NG tube over the next three months.  It's become very apparent that the medical field is extremely fragmented in their approach to patient care.  One specialist has a hammer, so everything is a nail.  Another has a saw, so everything needs to be cut.  I could go on, but I'm sure you get the point.  From a parent's perspective, what this means is that we essentially are getting the results from a Google search spoken to us by a person instead of having to read about it online, but the responsibility still lies on our shoulders to know which approach is best for our daughter, all things being considered.  What we really need is a master carpenter.  Someone that has an intricate knowledge of all of their potential tools, but knows when to use a sledge hammer or when it's better to just kick the wall down with their foot.  The end result might possibly be the same, but only the master carpenter knows that using a sledge hammer could possibly do more than just take down the wall.  It may actually affect the integrity of the home.  It may not be the perfect metaphor, but neither is the sea of uncertainty we've been swimming through lately.



Enter Dr. Bree Andrews.  Looking back, the time when we felt the most confident in our girls' care was when they were in the NICU.  Yes, we didn't always like the mixed messages we sometimes received when it came to some of the smaller details, but we never worried about their care or their future when they were under the supervision of the Neos.  Now, we really do love our pediatrician, but Neos seem to offer something completely different that one specialist can't provide--a complete and consolidated view.  At least that's what we were hoping we'd see from Dr. Andrews, who came recommended by Izzy's surgeon, Dr. Liu.  During a recent follow-up visit, Meg mentioned some of the difficulties we were having with all of the specialists we were seeing.  He suggest Dr. Andrews, who is still a Neo, but also specializes in post-NICU follow-up care.  We didn't even know that those types of folks existed. 

When we met with her, she had a few of the specialists from her team evaluate Izzy.  One thing they noticed right away was that her oxygen saturation level was a little low.  Not enough to cause serious concern, but enough to make her (and Dr. Andrews) a little uncomfortable.  So, now Izzy's back on oxygen, just like her NICU days.  We're not sure for how long yet, but we've already noticed a positive difference in her feedings and her general comfort level.   Several hours after we returned home, Dr. Andrews' team had already set up oxygen-for-the-home care for us and 20 tanks and a pulsox machine were delivered that night.

Yes, this is actually a pile of oxygen tanks in our dining room. The guy who delivered them suggested we lay them on their side because they have killed a couple of small house pets when they were stood upright and fell over!



Once the assessments were completed, Dr. Andrews sat us down and asked us a very simple question, "What can I take off of your plate to make your life easier?"  

We answered, "Everything."  Actually, I think we really said, "We don't want to feel completely responsible for all of the decisions that affect and direct her medical treatment." 

She replied, "Done!  That's my job now."

I felt like one of those families on Extreme Makeover: Home Edition when the truck pulls away to reveal this wonderful gift a family has received that will hopefully make their life a little or a lot easier.  As soon as she said that, Meg started crying.  Ok, WE started crying.  It finally felt like we would have a coach in our corner that would take over responsibility for running the team while we remained vital consultants to the team's overall success.  I literally saw the weight leave Meg's shoulders.  It was such a wonderful feeling to see her so happy and relieved and know that we wouldn't have to be making these major decisions alone.

Sleepers Are So Lame!

I'm not sure if we're the norm or if we're unique in deciding to dress the girls in sleepers most days.  Actually, "dressing" them would insinuate that there's actually some forethought that's put in to what they're going to wear each day.  Our process is much more simple.  Basically, when someone remembers to change the girls clothes that day, we walk in to the play storage room next to the family room and grab what looks like it will fit on to the respective girl.  Don't worry, the girls get their clothes changed every day.  Though, usually, we try to wait for someone to poop out of their diaper and make a mess of their clothes.  There's no reason to change clothes twice in the same day is there?  Well, it inevitably happens and the girls get, guess what...another sleeper.

It has become the uniform du jour in our house.  It comes in zipper and button flavors.  It eliminates the need to wear socks whose sole purpose is to fall off five minutes after you put them on.  It also keeps the babes slightly warmer than their adult counterparts, which I've been told is more comforting.

It also makes their parents look lazy and like they've been kept in bed all day.

Enter big bigger girls clothes.  They're not BIG yet, just bigger than the day before.  I think Meg and the nanny had some fun knocking off the dust from the myriad of clothes we've gathered that they'll probably never get a chance to wear.  Well, it was their day to be "bigger" girls.  I'm not sure what they thought about it.  Take a look for yourselves and see if their faces give anything away.

Sophia, almost in shock that she's not wearing a sleeper.  "Whaaaaaaat is going on here?"


Is it just me or is Izzy thinking to herself, "C'mon mom. Why did you dress me up like a teacher?"


Maddy, getting ready for her first hoedown.  All she needs is a piece of straw hanging out the side of her mouth.