Highest of Highs & Lowest of Lows

Dear Charlie Bird,

So many things have changed since I wrote you last, which might explain the delay between letters to you. You see, your mom and I have been a bit distracted by all that's been going on. Let's catch you up!

Day 43: 6/2/21 - You see, the first change happened literally 20 minutes after I wrote your last letter. As your mom and I were walking out of the NICU, we saw a new whiteboard with what looked to be an announcement. The board read: Visitor Changes Effective 6/2. Starting today, we were allowed to bring one visitor at a time into the NICU, which meant you would be able to meet your family after 44 days. Mom and I rushed off to call everyone asking them if they would like to meet you. Of course, everyone was beyond elated at the chance to finally meet their granddaughter/niece. Your Mom and I cried tears of joy and relief.

You may be able to imagine this someday, but these first 44 days wore on your Mom and me a bit. Each day, we came to see you in your little nest. We heard all of the dings, alarms, and cries. We witnessed your good days alone, and we endured your bad days alone. Of course, your family was supporting you from afar, getting calls and texts from us every day. But they could only do so much from the sidelines. They kept your mom and me afloat, though. On those difficult days, your grandparents were there to calm us down and reassure us that things would be OK. On those great days, your grandparents were there cheering you on. And it was tough for them, because they could only see you grow up through pictures, videos, or FaceTimes. You are so lucky, Charlie Bird, because you have such a loving family. Years from now, when your NICU days are behind you, your family will still be cheering you on during your good days and bad. They love you so much, so when we finally called to ask if they wanted to meet you, they all jumped at the chance.

Your Grandma Kay was the first one to meet you. After all, she was there in the hospital when you were born. We think she was the very first visitor that Helen DeVos Children's Hospital had since the COVID pandemic started 15 months ago, as your mom picked her up to come see you at 6:15am (visitors were allowed in starting at 6am). She was so excited that she was waiting in the driveway when Mom pulled in. And when she finally got a chance to see you in person, it was so special. We actually think we inspired a rule change to the visitor policy after one day, because when we came back the next day, the whiteboard had been updated to say that visitors were no longer allowed to be bedside during the nursing shift change from 7am-7:30am. You can thank your Grandma Kay for that.

You had some snuggle time with her for a few hours before Auntie Lolo got her chance to meet you. You two are going to be thick as thieves someday.

Finally, you met your Granddad. He was amazed at how tiny you were, and he was very gentle with you. Your Mom thinks he was a little nervous, but he would tell you he was just being cautious around you. (That risk aversion is the insurance agent in him.)

This was such a good day. Like I told you, for so long, we relied on our family to help us from afar. But now that we could bring family in to see you, the pressure to get you home as soon as possible dissipated. Honestly, we thought we would never get the chance to introduce you to your family before we brought you home. So having this surprise kind of hit us right in the face was so exciting.

Day 44: 6/3/21 - After the excitement of yesterday, we figured nothing could come close to topping it today. However, when we arrived at the Small Baby Unit, we were told that you were finally "graduating" from the SBU, and moving to Area 12 tomorrow. Doctor White, the awesome woman who delivered you, told Mom that everyone called Area 12 the "Eating and Growing" Room. This is where babies went to simply get bigger and stronger, so your Mom and I were beyond relieved to be moving from the Small Baby Unit, where life was a bit more touch-and-go. Yet, we were sad to be leaving the only place we knew in the NICU. We had come to see the Small Baby Unit as a comfort zone of sorts, a place that felt like our home away from home while we watched you grow. We had some scary moments there, as I've told you in the past, but we also had some amazing firsts, like watching you open your eyes for the first time, or seeing you progress off of different machines, and of course, it is where we held you for the first time. The SBU will always be a special place to us. Besides the big graduation news, you also went down on your CPAP settings on this day. You were now at a PEEP of 5.0, which was the lowest setting before you can try breathing completely on your own. You weighed in at 3lbs. 10.5oz. during your evening care time. You were also able to meet your Auntie Rachael (her daughter Avery can't wait to meet you!).

Day 45: 6/4/21 - Today was a BIG day for you. You officially made the move to Area 12. Nurse Holly was here for the big move, which was poetic, since she was there when you were admitted to the Small Baby Unit. We walked you in your isolette to your new spot in the corner of Area 12. We played the Jeffersons' theme song "Movin' On Up" to commemorate the day (we are saving "Pomp and Circumstance" for when you get to come home).

But this wasn't the only exciting thing to happen! Today, you were able to finally meet Gigi, Poppy, and Aunt Mo, who drove up from Fort Wayne for the day. Gigi was able to hold you in your Dandle Roo for an hour, and loved seeing your decorations and your sheets in your little corner. She held your hand for a while, and seeing her smile while meeting her first grandchild brought tears to my eyes (I don't know if you've noticed, but I can tend to get a bit emotional).

Poppy was next, and like Granddad, he was amazed at how little you were. He stood by your isolette, peering in with his head pressed to the plastic, holding your hand for minutes at a time. You had your hands behind your head like you were getting a sun tan at the beach. Poppy loved that, because it seemed like you were ready for a Seaside trip. The love of the sun and beach must run in the family.

Finally, Aunt Mo met you. Her reaction was almost identical to Poppy's reaction. She was amazed at your tiny stature, and loved holding your little hand. Like Auntie Lolo, you and Aunt Mo will be buddies.

Having you meet my side of the family was something I've been thinking about since the day you were born. While I was certainly emotional, I definitely didn't cry as much as I thought I would. I think the elation we felt overpowered the happy tears. You still have to meet a few more people on my side, like Uncle Teddy, Funcle John (Fun Uncle), Uncle Joe (Aunt Mo's soon-to-be husband), and Aunt Lovey (Uncle Teddy's girlfriend).

Day 46: 6/5/21 - Grandma Kay and Auntie Lolo came back to visit you. You had an extremely stimulating few days, so today was on the calmer side. You were up to 3lbs. 13oz. when you were weighed at care-time, and it was officially your last day in the Dandle Roo. Look how chunky you’re getting!

Day 47: 6/6/21 - Now that you were off of the Dandle Roo, you could be swaddled in the many blankets we've received as gifts from family and friends. I was able to get some skin-to-skin time with you for the first time in a while. The doctors came around while we were here, and surprisingly, they thought you could try to go off CPAP a day earlier than expected. This was the first time we could see your face without a mask for an extended amount of time. They went ahead and took you off CPAP while I was holding you, so I apologize for you getting a faceful of my chest hair.

Regardless, we cherished every minute of seeing your face. Mom held you in your swaddle for a while, and we got all kinds of pictures.

After about two hours off of CPAP, it was clear that you were getting tired. You didn't have any major de-sats, but your oxygen saturation dropped into the mid-80s, and you couldn't seem to get over 89. You were placed back on CPAP, but it was a great first try! We were so thrilled to see you breathing all on your own for two hours. The doctors said your next try would be in about a week, just to let your lungs continue to grow and strengthen.

Day 48: 6/7/21 - After losing a little bit of weight yesterday, you bounced back today, weighing in at 3lbs. 14oz. You hit the 33-week gestational age today, which meant the doctors could start weening you off of the Prolacta supplement that you've had in your food for weeks. Essentially, this Prolacta fought against Necrotizing Enterocolitis (NEC), and once preemies hit the 33-week mark, the risk of getting NEC drops so low that doctors do not even worry about it anymore. Now, rather than having Prolacta supplements, you receive supplements of Human Milk Fortifier (HMF), which is a formula-based supplement made from cow milk (the name is very confusing to me). This will continue to help you gain weight and grow. Mom and you had some skin-to-skin time, which you loved as always.

Day 49: 6/8/21 - Today marked our 50th day with you in the NICU (isn't that crazy?!), and you hit the milestone of "seven weeks old." Nurse Holly was back today and we were able to start dressing you up in real clothes! That meant we could do a daily fashion show with you (since this day, Gigi has been asking about your outfit often!). Your first outfit was the "gnomes" outfit, and with the pink ruffles on the sleeves, Mom said you looked a little bit like a cupcake. Mom and I both held you in your swaddle.

Day 50: 6/9/21 - Another day, another outfit. The only semi-serious thing that's been going on has been surrounding your blood sugars. You still have an occasional drop in your blood sugars, so that's something the doctors and nurses have been observing. The thought is that your blood sugar numbers could be explained by the change from Prolacta to HMF. Since you're still so tiny, any changes in your diet or routine can have adverse effects on your numbers.

Day 51: 6/10/21 - Again, another day, another outfit. Nurse Kate was here so we had fun coordinating your outfit with your swaddle. Mom and I both had a chance to snuggle you. Mom and Kate planned out your outfit for the baby shower that was coming up in a few days.

Day 52: 6/11/21 - Tessa, mom's best friend from high school, came to meet you (I think she wants you to call her Aunt Tessie). She was able to hold you for a while, and again, you were dressed up in a new outfit (are you sensing a trend?).

While Mom and Tessa were with you, I was hanging out with Georgie (Tessa's oldest daughter). We watched Moana, played with princess puzzles and magnet blocks, went to the playground at Ada Vista Elementary, and had a snack, all within an hour's time! It was a great glimpse into our future together, and it made me that much more excited to bring you home. (Confession time: I absolutely love Disney movies, so prepare yourself to be inundated with all of the classics very soon!)

Day 53: 6/12/21 - Today was the day of your baby shower! Now, usually, babies aren't born before their baby shower, but you're special I guess. Mom and I came to see you in the morning to get you all primped and proper for your "big debut." We had some snuggle time, then got you dressed up in your Gnomes outfit. We washed your hair a little bit, and made sure you were facing the camera. That's right... While we wish we could have had you at the shower in person, you had to do what the rest of the world has done for the past 15 months and attend your event "virtually." We brought all of your posters and artwork that the nurses have created for you and set up a station where people could see you "live" from the shower.

So many amazing women, both family and friends, came to celebrate you! While the ladies socialized, I went golfing with Granddad, Uncle Joe, and Mark (Meg's husband). It was the first time your Mom and I have seen a lot of them since you were born. They were amazed by your diaper size, and they enjoyed some food and drinks while catching up. Mom opened some gifts that you'll be able to enjoy when you're home (your stroller, some swings, new clothes, a bathtub, and so on). You are so loved, you truly have no idea!

Day 54: 6/13/21 - After all the excitement of celebrating you yesterday, your Mom and I came in to see you in the morning. After last week's try off CPAP, we knew that we would be trying it again today. The doctors came around and ordered your mask off, and you lasted about 5.5 hours without any help, which was almost three times as long as last week. After about 5.5 hours, you had some de-sats, so the nurses put in a nasal cannula to provide just a little bit of extra support (mostly just there to give you a whiff of oxygen to remind you to breathe). With the nasal cannula, you were able to make it through the entire night off CPAP. Again, we loved seeing you without your mask and hat. We got to see all of your incredible facial expressions (especially the ones you make when you're pooping -- like when you go cross-eyed).

We came in to visit in the evening when Nurse Natalie was working (my next-door neighbor growing up!). Mom got some more snuggle time, and we cherished seeing that face of yours. We did your care, and you gained a little more weight, weighing close to 4lbs. 3oz.

Day 55: 6/14/21 - Today marked the first day "back to work" for your Mom. One thing to know about your Mom is that she's a rock star at her job. She works as a customer success manager for a company called Narrative Science, but she hasn't worked at all since you've been born. Narrative Science has been so accommodating with her schedule. She loves her job and the people she works with, but even with all of that, going back to work is a bit scary for your Mom. She's been so laser-focused on you for the past eight weeks, so the thought of taking her mind off of you has been nerve-racking. After how well you had been doing, though, we were feeling fairly confident that going back to work would be successful!

But today was also your second eye exam. For this one, the clinician brought a RetCam to take pictures of your eyes to see how your blood vessels were developing.

If you remember your last eye exam, the opthalmologist did not believe you had Retinopathy of Prematurity, and because your vessels were considered to be developed to a "Zone Two," you only needed to have an eye exam every other week. This was the "every other week," so we came in fairly early to assure that we were here. To keep you calm throughout the exam, we put some "sweeties" (sugar water) on a pacifier. You did awesome throughout the majority of the exam. However, at the very end, we think some of the "sweeties" went down the wrong pipe, so to say. You threw up (the first time your Mom and I had ever seen you throw up), and that caused you to have a significant de-saturation (down to the single digits), as well as a Brady (low heartrate). You turned a bluish-gray color, and it took you a few minutes to recover. The nurses had to "bag" you, which means they were providing breaths for you, while the respiratory therapist had to put you back on CPAP. The whole episode lasted a few minutes, but it felt like a few hours to your Mom and me.

Seeing you surrounded by so many people as you were trying to recover was something we won't be able to unsee. All this did was remind us of that NICU roller coaster, and of your fragile state. You see, Charlie, we had been a bit spoiled the last few weeks with your excellent behavior. You've been gaining weight! You've been weening off on your breathing settings! You've been getting bigger, stronger, and more alert! And yet, all it takes is one event like this to remind us that we are still in the Neonatal Intensive Care Unit. You are still supposed to be inside your Mom for six more weeks! Sometimes we forget, through all of the checked boxes and all of the good days, that you are still so small and so fragile. Days like this are what we dread, because we not only become distracted to everything else going on in our lives, like going back to work, or thinking about things outside of Area 12, but we also fear for your safety and well-being. We love you more than anything in this world, and while you are surrounded by the very best nurses and doctors we know, it is still scary seeing you struggling to breathe, or seeing you turn a different color. The mental gymnastics that we have gone through during these past 56 days will leave a permanent mark on our memories and psyches. Yet, as I write you this letter, you are laying five feet away from me, sound asleep, all swaddled up, not knowing anything different. You won't remember this event. Your mom and I won't forget it.

So where do we stand? You're back on CPAP for now. You're at a PEEP of 6.0, where you haven't been in a few weeks. You're going to be eight weeks old tomorrow. The clinician came back around and told us your eyes are still looking great, with no signs of disease. We won't need to do another eye exam for two more weeks, at which point we will pray you don't go through this scariness again. This ride we've been on has been going up and up and up for a while now, and today we had a swift drop. But that's ok, because we are still on this ride, and we won't get off of it until you are riding home with us. We experienced the highest of highs when our families finally got the chance to meet you and hold you, and we experienced the lowest of lows seeing you struggling for air. What they say about the NICU is correct: it is truly a roller coaster. To think otherwise is foolish. Now we just have to hold on tight.

Love,

Dad