Happy (almost) Birthday, Charlie!

Dear Charlie Bird,

It is truly wild where one's mind will go after spending almost 80 days in the same place. It has been almost 80 days of your mom and me visiting you in the NICU. I have left Kent County a handful of times, driving all the way to Ottawa County (less than 30 minutes away) for basketball. Your mom hasn't left the county in over three months. And all that time spent in one place allows for some strange things to happen. A while back, I spent the day by your bedside trying to remember my friends' landline phone numbers (a landline is a phone that can't leave a house... crazy, right?). Another day, I actually bought, then somewhat enjoyed, a Pepsi Mango. Today, the crazy thought that hit me was the fact that you have never even been outside yet. You have literally spent your entire life in one of two rooms: the Small Baby Unit (Area 6) and then Area 12. Some kid feel sunlight 72 hours into their lives. You've gone 72 days plus another whole week without feeling the sun.

This experience truly puts things into perspective for your mom and me. Things that we thought were important before are no longer. Yes, we know that having a kid does that to parents, but we feel this even more so having spent all of this time with you in the NICU. And you want to know another crazy thing? You were supposed to be born TODAY. Yes, it's true. July 7, 2021 was supposed to be your birthday. Back when the doctors thought that mom had a placental previa, the plan was to deliver you by C-section today. Your actual due date is still 19 days away, and yet, you've been here almost 80 days. So, happy almost birthday to you, Charlie Bird. Here's how the last week went for you...

Day 70: 6/29/21 - After the excitement of you taking your first bottle yesterday, there were more big events for you today. First, you were moved out of your isolate and into a real-life crib! Nurse Holly rightfully described the crib as a bit "institutional," but the jail-like appearance couldn't stop your mom and me from being excited about this change. My only major gripe with it is that it is fixed at a certain height, whereas the isolate could be moved higher or lower depending on who was standing bedside. My lower back has been screaming as I bend over to try and change your diapers or swaddle you. Regardless, it's exciting that you don't need any of the aid from the isolate to regulate your body temperature, which is a key step in the right direction.

Mom stayed with you for the vast majority of the day as you two continued to work on your oral feeding. After yesterday's success with Nurse Holly, you took your first bottle from mom today! Mom was so proud of you. You took a few more bottles, drinking about 15 mL of breast milk each time. For now, the doctors have suggested you do 15 mL "trials" when oral feeding, but based on your performance, you can definitely take more than 15 mL. As soon as your feeding compressions can be weened, we don't expect you to have any problems feeding from a bottle.

On top of all that excitement, the family tour continued today, as you met your "Aunt Great" (otherwise known as Aunt Kathy or Kray Baby to your mom and me). She texted us in the morning saying she would be in the area and asked if she could come meet you. Obviously, the answer was a resounding "yes!" She arrived in the afternoon, and we brought her in to meet you. Your bed was decorated with a leopard-printed sheet (your Aunt Great's favorite) for the occasion.

Aunt Great held you for a while, which she loved.

Funny story -- she has held onto one of your preemie diapers since the first week you were born, and every day, she holds it and says a little prayer for you. She calls you the "miracle baby," with which I agree. After the visit, Aunt Great came back to our house for dinner and drinks. Your mom stayed at the hospital for a bit to do your 8pm care time, mostly because we knew you would probably be crossing the five pound mark with your weight. Lo and behold, you did.

Not only that, but you and Nurse Megan were matching (she had a leopard spotted hair-tie to go with your leopard spotted sheets).

Your mom and I loved having a relaxing night where we all just talked and hung out. We always appreciate opportunities to just talk to people, especially in person.

Day 71: 6/30/21 - While the past two days you took bottles from the nurses and from Mom, today was the first day you took a bottle from me. Was I terrified? Yes, especially due to your previous throw-up episodes. Luckily, Nurse Kate was coaching me through the feed, and you were able to eat the entire 15 mL bottle. Besides that bottle feed, there were no major changes or events today. We just enjoyed spending time with you as we made further progress with your feeds.

Day 72: 7/1/21 - You took yet another bottle from mom, and we did a little fashion show with some new outfits. The crazy thing is that you are growing out of your preemie clothes, especially now that you are over 5lbs. So some of the outfits we try with you are considered "newborn." That, plus the fact that you are wearing "newborn" diapers, it's crazy that you are this big. Our favorite outfit came courtesy of Lovey, with sprinkles and all.

The sweats were cute, but a little tight on you. Apparently, after we left, you screamed until the nurses got you out of those tight pants. I'm sure it felt the same as when I come home from work and immediately change into shorts or sweats.

Day 73: 7/2/21 - As it goes in the NICU, today was a step back in some regards. We received a call in the morning that your blood glucose level (a.k.a. your blood sugar) measured at a 30. Ideally, your blood sugar should be at least 50 or higher. And because this was not the first time you've had low blood sugar, the doctors used this opportunity to run some tests on you to try and figure out the reasoning for the low blood sugars. While those labs were being run, the doctors put you back onto a continuous drip feed, which meant that you would most likely not be hungry enough to take any bottles orally.

Whenever something like this happens, it is hard for your mom and I not to brace for the worst. Having low blood sugar is not ideal for proper brain development. While we were thankful that the doctors were going to try and find answers to these low sugars, it is still stressful for us. A lot of the anxiety comes from the thoughts about what these things mean for you down the road. Will this be something we will need to help you manage for days to come? Weeks, months, years? How will this affect your development? Will you outgrow this? Will this have long-term effects? We can't help that our minds go to those places when tests are being run on you. The doctors often preemptively talk about options, such as medication. The doctors mentioned one particular medication called diazoxide, which has some pretty major side effects, one being increased body hair. We told the doctors we wanted to avoid this medication if possible, and the doctors thought that was a good idea. Thankfully, this time, the labs came back and said that essentially, your low blood sugars could be attributed to your body producing too much insulin. Essentially, you are still premature. Regardless, it doesn't change the fact that the anxiety your mom and I feel when labs are called is not real.

Day 74: 7/3/21 - As it was the holiday weekend and there were very few people in the hospital apart from a couple doctors and the nursing staff, the team called for essentially no major changes to your care. This meant you were still on continuous feeds and that, most likely, we would not be able to progress with your oral feeds. Therefore, it was a pretty quiet day. After the stresses of trying to figure out your blood sugars from the day before, your mom and I took the opportunity to go to the pool and relax a bit.

Your grandparents and aunts & uncles were all celebrating the 4th of July at their cottages (Grandma K, Granddad, and Auntie Lolo in the U.P. on Lake Superior & Gigi, Poppy, Mo-Joe, Uncle Teddy & Lovey, and Funcle John at Lake Gage in Indiana). It was really hard not being with family, as this is usually a holiday where we are with our loved ones. Yet, it was nice to be at the pool, and because so many people were out of town for the holiday, the pool was fairly quiet and peaceful. That night, our neighbors set off some fireworks in the driveway, so that was our fireworks show for the holiday weekend.

Day 75: 7/4/21 - Today, we had a little 4th of July themed fashion show. Your wardrobe was (obviously) red, white, and blue (or "cute" as your onesie said).

This onesie did not remain "cute" for long, because later, you had a major poop attack, soiling that onesie all the way up your back and to your neck. Your nurse was appalled, and ended up giving you a bath. The onesie itself is probably ruined, but it sure was "cute" while it lasted. Luckily, we got some good family photos before the poop!

It was a quiet 4th of July for us, but we were thankful to spend it with you.

Day 76: 7/5/21 - The hospital was quiet today as, despite being a Monday, it was still considered to be a "holiday." We celebrated the milestone of you reaching 37 weeks gestational age, but in a less busy room than normal. There were only two nurses working in the room, including Nurse Brooke. When we arrived, she mentioned that your blood pressures had been measuring a bit high. At this point, we had had multiple nurses talk to us about your high blood pressures. Once we brought this up to Dr. Ben (a.k.a. Dr. Doctor -- hehe), he decided to call for some tests. High blood pressures in premature babies are often associated with renal function, which is a fancy way of saying it involves your kidneys. Dr. Ben called for a kidney ultrasound to see what was going on, and whether it would be necessary to call in a pediatric nephrologist to help.

One thing you should know is that anything dealing with kidneys is a bit of a sore subject for your mom. When she was just over one year old, your mom was diagnosed with cancer. Specifically, it was a Wilms Tumor, which is a type of kidney cancer. Your mom had one of her kidneys removed and then underwent chemotherapy to kill off any remaining cancer cells. So to this day, your mom only has one kidney. Understanding that, you might be able to see why your mom gets nervous anytime kidney functioning is brought into question. Thankfully, when we went through the IVF process to conceive you, we had some genetics testing done, and Wilms Tumors are not genetic. But until we had an answer, we had to sweat it out a bit, like we did when trying to find the answer to your low blood sugars.

Luckily, with it being such a quiet day, we were able to get answers relatively quickly. Within a half hour of talking to Dr. Ben, the ultrasound tech had wheeled his machine up next to your crib and started performing his scans. Then, about an hour later, Dr. Jens Goebel, a pediatric nephrologist, came in to speak with us. He had a great demeanor to him, and reassured us that this, too, could be chalked up to your prematurity. We were able to breathe a bit easier. Your kidneys looked great, and all that you needed was some blood pressure medication twice a day. Now, we may need to keep giving that to you when you eventually come home, but the doctors say it is expected that you will grow out of this. Another good finding, but another stressor as we waited for results.

Besides that work-up, you were taken off your continuous feed, moving you to two-and-a-half hour compressions. But later that night, in your typical, stressful fashion, you had a major alarm for Brooke where you dropped to a saturation level of 6 right after you were trying to bottle feed.

Day 77: 7/6/21 - Eleven weeks old today! The biggest change today was that you again had your feeds compressed, this time to two hours, which is what you were at prior to your low blood sugars a few days ago. Kristi was your nurse today, and she had fun showing mom and me some ways to help you poop, as you were grunting and groaning all day. She taught us the bicycle method, which essentially is when someone moves your legs in a bicycle motion, then gives you something to push on. Immediately, you filled your diaper. It was something to behold. Nurse Megan was back at night, and you took a bottle from her during your 11pm care time, which was super exciting to mom and me as it showed you were again taking some steps towards feeding entirely orally.

Since you're still on the "resident" team of doctors, we were able to meet a "new" attending doctor with the team today, Dr. Beaumont. I only say new because he is new to us. He is one of the medical directors in the NICU, and the nurses called him the "O.G." of neonatologists at Helen DeVos Children's Hospital. This man is absolutely brilliant, and his intelligence makes him super intimidating! He is the type of guy who reads academic journals for fun (I am only semi-joking), and yet, he has this incredible encyclopedic knowledge of all things NICU. He saw my Cubs hat, asked if I was a "real fan," to which I feebly replied, "Yes." This launched us into a deep-dive discussion on the history of the Cubs, the cathartic World Series victory, the deep-seeded pessimism that encompasses all Cubs fans, and an unhealthy understanding of the Cubs roster needs and the salary implications moving forward. He has forgotten more about the history of the Cubs than I have ever learned, and this is his approach to following a sports team, so you can imagine what it's like for him when it comes to understanding his life's work in the NICU. I can only imagine how the residents feel during rounds when they have to answer his questions. Long story short, Dr. Beaumont is intimidating, but brilliant, which makes us thankful he's keeping an eye on you this week.

Day 78: 7/7/21 - This morning we woke up to a call from Nurse Megan letting us know that you had two major alarms at 5:30am and 6:00am. For the first one, you needed "vigorous" stimulation to get you breathing. For the second one, you had to be "bagged" and Nurse Megan had to provide breaths for you. A few days ago, you had been taken off of caffeine, which helps you with your periodic breathing. Caffeine has a half-life of five days, which means the caffeine can still "work" up to five days after you've been taken off of it. Today is day five, and so those alarms could be attributed to your periodic breathing. Your mom and I, along with a few of your nurses, believed that your alarms were more associated with some reflux during feeds, but Dr. Beaumont believes that you are having some apnea events (where you don't breathe) which then causes your reflux. While it is certainly scary to wake up to the thought of you turning blue again and needing help breathing, Dr. Beaumont doesn't seem overly concerned. He discouraged the resident doctor from putting you back on caffeine to see how you would do for another day. Your feeds stayed the same, still at two-hour compressions, but he thought it would be best to avoid any oral feeds for the day to give you some rest. When we arrived, it was clear that you were working hard, as we could see some retractions in your breathing (visible parts of your stomach that were sucking in with each breath). Yet, those retractions became less and less noticeable throughout the day.

Physical therapy came in and gave you a massage, which was something you deserved after your eventful morning, and then, since you were a little greased piglet, we went ahead and weighed you and gave you a bath.

You gained 15 grams from yesterday, putting you at 5lbs. 9.5oz (your weight gain during the last few days has been crazy in a good way). We dried you off and combed your hair after your bath. When mom brushes your hair back, it looks like you have a little bit of a receding hairline, which I think makes you look like a "mayor."

The "mayor of the NICU" has a nice ring to it.

Tonight, mom and I are planning to go back for the shift change to see how you're doing. We are certainly hoping for a calmer night, because we are tired of the stress. While we are going through these events, it feels almost as though we are wearing horse blinders on an island. We feel alone, and we only see what's happening in front of us. Now, if we take the blinders off, we would see that there are all kinds of people with us on that island who are more than willing to help. But during those moments of stress, it's impossible to keep those blinders off. Your mom and I have had very few opportunities to "escape" the island. For the past almost-80 days, our focus has been almost entirely on you and your well-being. It is exhausting. And now the notion of you coming home is like seeing a ship on the horizon. Your mom and I are waving our arms, trying to send up a smoke signal. It seems so close, yet so far away. We are tired of being on the island.

Soon enough, we will take you home. Aside from those alarms, you are making amazing progress. Your mom and I are so proud of you, Charlie Bird.

Love,

Dad