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.

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!

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