The Scary and Exciting H-Word

Dear Charlie Bird,

Things are starting to get real. On Monday, your Mom and I heard the doctors say a word that we thought we would never hear: "home." That's right. The conversation about when to bring you home has started. We do not know exactly when that will happen quite yet, as a few things need to be accomplished. First, you need to go a full week with no "stimmed" alarms, meaning alarms that require your nurses to stimulate you to get you breathing. You have not had a "stimmed" alarm since July 17 (four days as of writing this letter). Next, you need to continue working on your bottle feeds, but bringing you home on a feeding tube is not totally out of the question. Third, you need to complete your "car seat test," which requires you to sit comfortably in your car seat for an hour and a half with no alarms. Basically, it is to make sure you can properly breathe in your car seat.

The fact that we have gotten to this point of talking about bringing you home can be attributed to your amazing nurses. They've not only kept you alive and growing, but they have been so essential to the wellbeing of Mom and me. They've been our rocks, our therapists, and our best friends throughout this whole journey (they are the only people we have talked to on a daily basis during these last 13+ weeks). Our primary nurses Holly, Kate, Megan, and Brooke will forever be special to our family for what they did for you each day in the NICU.

So how did we get to the point of thinking about finally coming home? Here's a recap of what's been going on in your life.

Day 79: 7/8/21 - If you remember, on Day 78 you had two big alarms that required Megan to "stim" you. Brooke was on the day shift keeping an eye on you to make sure those alarms were more flukey than concerning. You remained on a two-hour feeding compression, so today was mainly a day for you to relax and recover, as well as keep those blood sugars up, which is something you've been battling to do for the last few weeks. Nephrology continues to think your low blood sugars can be attributed to prematurity, so our hope is that as you get bigger, you'll more easily be able to regulate those sugars.

Jason from PT came to perform a standardized PT test to assess various physical abilities, such as your ability to track things with your eyes and ears, your startle reflex, among others. Jason had to somewhat "toss you around" to see how you responded. At one point, you were placed face down on the bed to make sure you had the impulse to move your head so you could breathe. At another point, he put a towel over your face to make sure you organically moved your hands to your face, signaling you wanted that towel off. You did a great job, and there did not seem to be any pressing concerns about your reactions.

Day 80: 7/9/21 - Historically, the times when your blood sugars have been low have occurred after your feeds have been compressed to shorter times under two hours. Today, the resident team thought it would be a good time to try you on a one-and-a-half hour compression. The reason for the lower blood sugars had been because you burned up your reserves during your "fasting" time, the time you spend not eating. By moving to a one-and-a-half hour compression, that meant you would spend 90 minutes during every three hour period not eating. We have tried to move you to this compression a few times before, but because of the low sugars, you didn't stay there long. I say all of this because your Mom and I were waiting on pins and needles for updates on your blood sugars throughout the evening. We drove out to Grand Haven to meet up with our friends Tessa and Matt for dinner on the beach. Before we left, your blood sugar was "appropriate," meaning it was good. But on our way to Grand Haven (the farthest we've both been from home), your blood sugar measured 39, which is rather low. Thankfully, the resident team gave you another chance to regulate those sugars, and the next time we called, you were at a 63, which meant you were staying at the shorter compression! We celebrated with Matt & Tessa, and then called for another update when we got home. Nurse Ryan checked your blood sugar again "just for fun" and it was even better, coming in at 88.

Day 81: 7/10/21 - Today, you had the opportunity to meet your Great Granddad Mike and Great Grandma Barb. They called Mom earlier in the week and said they wanted to meet you, so we made it happen. They were both so excited to meet you.

That leaves Great Grandma Sandy, Great Grandpa Pop Pop and Kathie, and Great Gramps Roger and Elba who have yet to meet you, but those introductions will happen soon enough. Poppy came up to visit so I took him out to dinner at our favorite restaurant, Butcher's Union.

Day 82: 7/11/21 - Poppy came to the hospital and held you for a while. It was a short visit, but he always loves giving you little arm massages as he's holding you.

He kept saying how excited he was to get you to Seaside to see you playing on the beach. You've always had the "lounging at the beach" pose down.

Then we went out to lunch and met up with Gigi. After that, Gigi and Mom went to hospital to see you as well.

Gigi brought up your rocking chair for your nursery, and we moved it in and set it up. You'll love it! (Archie already does…)

Day 83: 7/12/21 - The big news of today was that you were moved to a one-hour feeding compression. We were knocking on wood, but it seemed like we were beyond your blood sugar scares. Besides the feeding change, it was a pretty uneventful day. Mom and I came in to get our snuggles and work on bottle feeds. Remember, with your recent feeds, we've been able to practice feeding you out of a bottle, maxing out at 15mL per bottle feed. Sometimes you take all 15mL, other times you don't, which is OK!

Day 84: 7/13/21 - We had another one of those dreaded eye exams. This time, I "contained" you during the eye exam, meaning I held you and comforted you while the ophthalmologist pried your eyes open to look at the development of your blood vessels. Overall, you did an incredible job. You cried a bit, but who wouldn't?! (After all, look at the marks on your eyes from the tools used to keep your eyes open.)

The best news was that the eye doctor loved the progress you've been making. Your eyes were now in "Zone 3," which meant we could go an extra week (three weeks instead of two) before your next eye exam. For your Mom and me, this is a whole extra week of respite. Your future friend and fellow preemie Scottie sent us some cookies from Insomniac to cheer us up after the exam.

Mom and I came back for the beginning of the night shift to hang out with you and Nurse Megan. We gave you a bath, and because you were so relaxed, you pooped in the tub. I, of course, found this hilarious and gross, and I asked Nurse Megan if she made any "First Tub Poop" crafts. To my disappointment, she said no. Instead, she ended up making you a craft for you passing six pounds (you weighed in at 6lbs. 1oz.)!

Oh, and for a second, your Mom was convinced you were turning into a red head.

Maybe you have more in common with Birdie than we originally thought!

Day 85: 7/14/21 - Another day, another feeding change. You were moved to a half-hour feeding compression. This is the last compression time before moving to "gavage" feeding, which is that breastmilk beer bong that I've told you about in the past. We continued working with you on your bottle feeds too. Besides that, it was another relaxing day. Liz from physical therapy came to give you a massage, which you loved, as always.

To celebrate another good day, your Mom and I went out to dinner at Butcher's Union (where else?!). You were there, too, just virtually.

Day 86: 7/15/21 - Today had one big change, literally. You gained three ounces, which is your biggest weight gain ever, weighing in at 6lbs. 5oz. It seems like you're gaining multiple ounces a day at this point, and it puts things in perspective, as it seems like only yesterday we were happy when you gained five grams, let alone 90. The doctors have been thrilled as well, as you are slowly but steadily getting back to your growth curve (around the 50th percentile).

Day 87: 7/16/21 - Another low key day as we continued to work on your bottle feeds.

Day 88: 7/17/21 - Yet another big weight gain for you as you put on an additional 2.5oz, which puts you up to 6lbs. 9oz. We gave you another bath. This was the day of your last "stimmed" alarm, but Nurse Holly said it was not a super discouraging alarm. You came out of it pretty quickly. Nevertheless, because of this alarm, you have to wait at least seven days before coming home.

We have also continued receiving amazing letters to you from our family and friends. Every letter/note, whether it's a few sentences or a few pages, has been a joy to receive. (If family and friends are still interested in sending letters, they can find our address HERE.)

Day 89: 7/18/21 - Today, you officially moved off of your compression feeds and onto a gavage (gravity feed). And with that change, there is now no limit to what you can eat by bottle with each feed (so, there is no 15mL limit). On this first day of no-limit bottle feeding, you took seven out of your eight bottles, eating between 22mL & 35mL each time. Drinking by bottle is a major workout for a little baby like you, so when you eventually tired out, the rest of your feed was administered by gavage. The greatest thing was that you took these feeds without any alarms. In previous days, you've had some coughs/gags/regurgitations that have caused your heart rate to drop. These don't necessarily count as "stimmed" alarms since they are feed related. You even threw up once and didn't alarm, which is something your Mom and I aren't used to. Nurse Holly explained it as you doing "normal baby things." We need to get used to that! From a growth perspective, you weighed in at 6lbs. 10.5oz. Overall, this was a great day!

Day 90: 7/19/21 - You took your first two FULL bottles today, the day you reached the 39-week gestational age! This was amazing progress, and also an intense workout for you (as evidenced by the "after feed" pictures).

Hopefully, in the coming days, you continue to build that stamina that you need to take full bottles like that every time you feed.

Day 91: 7/20/21 - In the morning, Mom had some work calls, so I came in by myself for some daddy-daughter time as we celebrated you turning three months old (13 weeks exactly!). I handled "all of the things..." Feeds, diaper changes, snuggles. During feeds, your Mom and I have been doing our best to not look at your monitor during feeds, and instead focus on you and your cues. The doctors put my focus to the test by rounding during your feed. Your Mom would be the first to tell you that I am a horrendous multi-tasker, so I was challenged to listen to rounds while feeding you at the same time. I think I did pretty well! I heard the doctors say that they were done with your blood sugar pricks (meaning they were no longer concerned about these sugars), they were done with your Monday morning labs, and that your recently increased dosage of your blood pressure medication seemed to be working as your blood pressures have normalized a bit. Another change discussed was that they would be taking out the liquid concentrate from your feeds and replacing it with an increased volume of breast milk, as you had successfully proven your ability to adequately gain weight. You made that clear as you clocked in at 6lbs. 12.5oz last night.

Your Mom came in after her work calls with your car seat so that the nurses can perform the car seat test whenever they are ready. You seemed to really enjoy your car seat for the short time we put you in it for a picture.

Then, Auntie Lolo came in to get her Charlie fix.

Day 92: 7/21/21 - Today, we continue to prepare for your homecoming, whenever that happens. Your Mom has been majorly "nesting," AKA getting the house ready for you. The rooms are clean, everything is set up where it needs to be. We are going to get our new car, the one we will bring you home in (and one that lives up to your Granddad's safety demands). The one semi-major thing you have on the schedule is a fairly routine heart echocardiogram. You have what’s called trivial pulmonary arterial stenosis and the doctors want to make sure it is resolving. We will be in later this afternoon to continue working on your feeds.

It is amazing that we are at the point that bringing you home is even on the horizon, even though we still don't know for sure when you'll be home. Whenever that happens, though, we will be ready (we think). In the meantime, it's not your job to focus on that. After all, you still aren’t even supposed to be here for another five days, as your July 26 due date is rapidly approaching. You just keep eating and growing and we will worry about everything else. We love you so much, Charlie! You are so close!

Love,

Dad