izzymccoy

[izzymccoy]

2/8: Ready

The tank is ugly as sin. It’s an awful, faded, splotchy forest green, and, in a minor miracle of bad design, the Christmas tree stand it sits in is somehow an even worse greenish hue. Then there’s the trashy torn cardboard it all sits on. It’s impossible to miss: All 5 feet of this monstrosity, along with 32 feet of attached tubing, sits smack in the middle of the entry way to our house.

And we couldn’t be happier about it. 

Isabelle comes home on Monday. We’ve taken our mandatory infant CPR class, been trained on her at-home heart monitor, and that giant green tank with two weeks of oxygen stands at the ready.

That makes one of us. I’m not sure Ensley, me or Elliot are prepared for this new stage in our lives. But we could not be more excited. It’s still hard to believe: We’ve been in the NICU for nearly five months and are used to this life rhythm. We get Ellie to school or the nanny in the morning, come to the hospital during the day, come home and hang with El at night. Rinse, repeat.

Izzy’s north of 9 pounds and coming home with the smallest level of assisted oxygen possible. We don’t know how long she’ll be on it; some babies need for a few weeks, some a few months. She’s coming home without a feeding tube, which is incredible news. If it wasn’t for the little cannula in her nose, she would look and act like any other newborn. Considering where she started her journey, that is nothing short of remarkable. 

So starting Monday, just like any other newborn, all three of us will be living in three-hour increments; feed, burp, cry, nap, poop. Not always in that order. 

We can’t wait. 

[izzymccoy]

1/31

Soooo ... We started arranging Isabelle’s room last night. 

Things are getting real. 

[izzymccoy]

1/27: Happy Tired

If our adventure with Izzy was a movie script, this would have been the perfect ending: Ensley finishing the last lap of a 5K in support of Wolfson Children’s Hospital, turning the corner into the crowded baseball stadium for the final few steps, then suddenly she’s mobbed by me and about 30 of our closest friends. We all cross the finish line ugly crying and happily chanting “IZZY! IZZY!”

When we look back on Izzy’s journey, yesterday’s run will always be a part of the story. It was a celebration of the spirit that has imbued us since she was born: We’ve all become happy fighters. 

From the first email Ensley’s friend Lauren sent proposing the idea of doing the run, so many people rallied. We ended up filling four teams of 11. Pink “TEAM IZZY” shirts flooded that race area. The show of support was difficult to fathom; the amount of time and effort given by all of our busy friends and family was remarkable. At one point early in the day, I looked and Ensley and said, “Can you believe they’re all here for Izzy?” She hugged me and said she didn't want to think about it too much because she didn’t want to cry yet. 

The tears finally came at the finish line — It was a powerful, cathartic moment for us. It’s been a long, difficult few months, and we knew how much our friends did to keep us going.

And we’ll need them in the coming months as well ... When we bring Izzy home!

She’s been a little rock star the past few weeks. She’s putting on the pounds — over 8 now! —and getting stronger every day. So much so that we’ve been moved to Weaver Tower. Up here, she has her own room with a bathroom and a shower. Why? Because this is the final step before taking your baby home, and the staff wants you to spend more time with your little one. 

Feedings every three hours. Like a normal newborn!

How’s this for head-shakingly great: Izzy’s lungs are already healthy enough to come home. The last hurdle is learning to eat from a bottle and breathing at the same time. So we are ramping up — started at one bottle a day, now we’re at 4. Once she shows the staff she can finish bottles regularly, we can officially start packing up to go home. And since she is a Hill, we have no doubt she’s going to show everyone she can eat like a champ. 

One of the best lessons we learned from this experience was to celebrate the little victories. Well, yesterday was not small. It was a huge win, and a celebration we’ll never forget. 

[izzymccoy]

1/13: The Next Level

The oscillator. The jet. The vent. Non-invasive vent. CPAP. And now, like she’s coming to the conclusion of a crazy video game, Isabelle only has two levels left of assisted breathing. Today she’s on high flow. If she can master that, she moves to something called PD Flow. We won’t bore you with the technical explanations for each of these stages. We’ll just skip to the only part that matters: When she reaches PD Flow, she can come home.

You read that correctly.

The usual caveats must be made: With so many people in the NICU, Izzy still faces the risk of infection. We’ve moved aggressively through non-invasive and CPAP, which means she could slow down soon or possibly even take a step back. And no doctor or nurse has given us a hard timeline. This journey has taught us to go into these new phases with our eyes open. We hope for the best, and prepare for everything else.

We know it could still be weeks or even months. If Izzy has taught us anything, it’s that she’s the damn boss and we go at her pace. That said, you know things are getting real when nurses start asking what Izzy’s crib is going to look like when she comes home.

So here we go on the high flow. The next level. Only one more left.

[izzymccoy]

1/6: Back to Work

New year, new schedule. Ensley went back to work today. This means changes in the house, as she began the new regimen of getting up early so she can spend some time with Izzy before going back to her office. This also means it’s up to Dad and Elliot not to burn the house down after Mom leaves every morning—no promises, but we survived Day 1.

This entire process will be made easier by two huge factors: 1) Ensley’s company has been almost impossibly generous and provided her with the schedule flexibility to make this happen. 2) Isabelle is doing great.

Our meetings with the doctors last week were almost entirely positive. Before they got into the specifics of the numbers and analysis, they went out of their way to tell us how proud we should be of her progress. On the scale of babies born at 23 weeks (affectionately dubbed “23-weekers”), they explained that Izzy is doing incredibly well. She’s getting big—almost 7 pounds!—and if you can see beyond the tubes, looks and acts very much like a normal newborn (she even spit up all over Mom the other day).

Slowly but surely, her little lungs are growing. The doctors expect that we’ll be in the NICU for several more months, but they said that when we do go home, she shouldn’t need intense care. It’s also likely she’ll have some kind of assisted oxygen for a little while, but in the realm of possibilities—which included things as severe as multiple daily nurse visits—this is a major victory for all of us.

So, for the first time since the madness of September 16, we have something close to a plan: Work and wait for the beauty of spring. And it’s hard to believe considering what we’ve been through, but in the meantime we have to start preparing the house for a new member!

[izzymccoy]

Big milestones this week: tomorrow (1/7) is Izzy’s due date and Mommy went back to work today.

Izzy is doing good and progressing nicely.

6lbs 12oz

[izzymccoy]

Izzy is doing well this week. She is stable and they are working with her to wean some of her vent settings. Izzy tried the Mammaroo for the first time and tolerated it for about 20 mins. Her biggest hurdle is still her lungs, which will just take time. Thank you all for the continued support and love.

1/2

[izzymccoy]

100 Days

Today is our 100th day in the NICU. Incredible. One hand it seems like we’ve been here forever. On the other, it feels like just one looooong blurry day. But we know this: If someone would have offered us this deal when they put 1 pound, 7 ounce Isabelle in the ambulance, we would have gladly taken it.

Every day has been a gift. Merry Christmas!

[izzymccoy]

12/23

Izzy had a good day today and is adjusting from her eye exam. Her eye disease (ROP) is still there but the docs are happy with how they look since the shot last week. She also had speech and physical therapy today!

[izzymccoy]

Happy Holidays: 12/22

Isabelle, we are learning, is a festive little thing. During Halloween, she finally started battling back against a nasty infection. The day before Thanksgiving, she graduated from a breathing tube to the nasal cannula. And now, just in time for Christmas, she is at it again: After about 10 days of plateauing and even moving a little backward, Izzy is doing great.

We were getting worried. The high times and low ventilator settings in the first few days after graduating to the B Side of the NICU were evaporating. The preferred route to a full recovery in our situation is for the vent settings to move lower—her little lungs improve and begin to do the work of the machines. But instead of discussing the next steps in that direction, the doctors and nurses were talking about the methods they still had at their disposal to prevent reintubation: re-inserting a breathing tube down her throat. Despite that, they were confident that Izzy was doing fine. But that didn’t make it easier for us to watch every day.

And then the eye doctor came.

At this stage of a micro-preemie’s development, they begin to check the eyes. The concern is that the blood vessels aren’t connecting properly to the retina. The science is remarkable: They can open up Izzy’s tiny eyes and actually check for this. And last Monday, the eye doctor told us that Izzy’s eyes needed to be treated. She assured us that this is common, and the treatment was extremely effective. But she did recommend we go to the waiting room while they administered it, because they take a tiny needle and insert the medicine DIRECTLY INTO HER EYE.

We both nearly passed out upon hearing that. But the doctor explained that there are no nerve endings in the eye, so it wouldn’t hurt her. We swallowed hard, signed the release form, then sprinted to the waiting room. (Izzy, of course, handled it better than her parents. The doctors were impressed at how she responded to the entire process.)

Big things happen fast and usually without much warning in the NICU. So when we trudged in two days ago, it was a cold, dreary morning and we felt the same. We were fully expecting to continue on Izzy’s Plateau. But the nurse was smiling. Izzy was gaining weight and dropping vent settings. The rally was on.

Today Izzy weighs 5 pounds, 12 ounces. FIVE TWELVE!! It’s incredible. She’s feisty and doing baby things like cry and get the hiccups and blow out diapers. When Izzy plateaued, the doctors constantly assured us that these things happen: babies like Izzy are known to surge forward, plateau for a few weeks, sometimes even move back a bit, then surge forward again.

So, after a difficult few days, the numbers are moving in the right direction again. Izzy appears to be surging. And that is the best Christmas gift we could possibly receive.

[izzymccoy]

Our 5lb 5oz-er!

[izzymccoy]

Our Mighty Mouse.

12/10

[izzymccoy]

12/8

About a week into Isabelle’s life, we finally walked out of the NICU feeling buoyed. Izzy had some positive vitals and the doctors were finally talking about next week, not the next few hours. On our way home, I blasted “Good Day” by Nappy Roots and we sang and laughed. It was a rare good moment. I got home and started a playlist called Izzy and put that song right at the top.

Thus began what I will freely admit is the worst playlist I’ve ever made. To an outside eye, it’s an insane jumble of discordant songs and genres; but for us, it’s a perfect reflection of our life the past few months: Thoughtful, teary ballads like “Clay Pigeons” by John Prine and “Wildflowers” by Tom Petty are right there next to Ice Cube’s “It Was a Good Day.”

Well, today we are listening to a bouncy jam called “Whathegirlmothaf***inwannadoo” by The Coup and Janelle Monae because Isabelle is ROCKING OUT. This is being written from the B Side of the NICU, which is known as the “Growing and Feeding” side. That’s right: After more than two months on the A Side—the more critical wing where new babies are rushed in and the ones who don’t make it are quietly moved out—Izzy was deemed healthy enough to graduate to the next level.

Things started moving quickly on the Wednesday of Thanksgiving week, when the doctors surprised us with a big decision: They decided to extubate. This means removing the breathing tube that went into Izzy’s mouth and directly into her lungs, and replacing it with a cannula, which is assisting breathing through the nose. It is the next step in a long progression to breathing normally. We had tried this once before several weeks prior, and Izzy didn’t even last 24 hours before they had to re-intubate. Her little lungs just weren’t ready. But this time, she was bigger and the doctors liked how she was progressing. So they went for it.

Since then, Izzy has been a new baby. Not only has she taken to the cannula, she has made some massive steps in a short amount of time: She moved to the B Side, she no longer needs a closed roof on her isolette (I have yelled “Popped the top!” at random, by myself, several times this week), and she is gaining weight. Y’all ready for this?

You sure?

No, you’re not.

OK, we can tell you.

But we recommend sitting down because this is for real.

Today she reached …

FOUR POUNDS, ELEVEN OUNCES.

You read that correctly.

I recently added a song called “New York Minute” by Don Henley. It’s a late 80s deep cut from the former Eagles lead singer where he wails about how fast things can change (For West Wing nerds: It’s the opening song in a great Season 2 episode). I added it after Izzy had an especially hard day—when we woke up she was doing well, but by the time we left the NICU they had to crank up her oxygen again.

Yesterday, both Ensley and I got to hold Izzy for a few hours. On the ride home, I cranked that song. Don was right: Everything really can change.

[izzymccoy]

A LOT to be thankful for this week. Izzy had her breathing tube removed and is doing great, Dad got to hold for the first time and she is also in clothes!

11/27-11/30

[izzymccoy]

First swaddle. Lots of milestones this week!

11/24

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Today was a big day! First time in clothes!

11/23

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Who knew cheeks could be this chunky on an almost 4 pound baby.

11/22