Dear Charlie Bird,
Today is Mother's Day, one that we never thought we'd be celebrating, but we are celebrating, thanks to you. I'm writing this from the NICU, looking at your little nest. Your mom is next to me, pumping breastmilk for you. I know I've told you how amazing your mom is, but it still blows my mind that she is making and supplying the food that you eat! In the first few days of your life, your mom and I were excited when she got a couple of milliliters of breast milk, and now she's pumping a couple hundred milliliters a day for you.
For most of this journey, I have been relegated to cheerleading duty, rooting your mom on as she performs all of these amazing tasks. For pumping, we've both been setting alarms on our phones for every 3 hours, alerting your mom to when she needs to pump. She did NOT like when I set my alarm to "Pump It" by the Black Eyed Peas, and she also didn't love when I started chanting "Left side, strong side!" at her like I was Julius Campbell and Gary Bertier in Remember the Titans.
Tomorrow, your gestational age will be 29 weeks, and on Tuesday, you will be three weeks old. Since your birth, we have talked to so many people in the NICU, and those with NICU experience, and we've heard the same couple of things. "The NICU is a roller coaster" and "The NICU is a time warp." It seems like it's been two days and two years, all at the same time, since you've been born. And emotionally, "roller coaster" is the perfect descriptor. I can't help but think back on all that you have been through so far in your life. Here is a daily run-down:
Day 0: 4/20/21 - In my last letter to you, I wrote all about your birth. That day is a complete blur to me and your mom, and it was a roller coaster all by itself. Mom had her emergency C-section, you came out crying and breathing on your own, and I cut your umbilical cord. You went to the NICU without a ventilator, which was amazing in and of itself. You had a wonderful first night. The only thing I will add about your birthday is that, as a high school teacher, I am not thrilled about you being born on 4/20. You couldn't have waited four hours? No funny business in 14-18 years, Charlie.
Day 1: 4/21/21 - The adrenaline and the joy that was coursing through our bodies after that first night quickly came crashing down on night two when you gave us a major scare. We got a call from your nurses at 4:30AM saying that you had a pulmonary hemorrhage, which is a bleed in your lungs, and you had to be re-intubated, meaning you were back on a ventilator. At the time, your Mom and I did not fully understand the severity of this episode. You spent the next few days recovering from the bleed.
Day 2: 4/22/21 - This was a quiet day of rest for you after your lung bleed. Mom and I came to hold your hand and to make sure you were comfy. You didn't get any food today so you could fully rest as much as possible. On and off for the first few days, you received light therapy for your bilirubin levels. Essentially, you sun-tanned under a cool UV blue light and wore these amazing sunglasses.
Day 3: 4/23/21 - Your mom held you for the first time on this day. There's video of her holding you, but my audible sniffles and crying in the background diminishes from the footage. We will always remember this day! You started your feeds again, eating 2.5 mL of breast milk every three hours through your feeding tube.
Day 4: 4/24/21 - This day was my first chance to get some Charlie snuggles, as I was able to hold you for the first time. I loved every minute of that hour, but I was also super scared. After all, you were SO tiny. I felt like I was tensing up my muscles non-stop for a full hour so your body wouldn't move. After all, because you were still in your first week, we had to hold you in a "midline" position, meaning your head had to be perfectly aligned with your spine. The doctors said any major movement could result in a brain bleed, which terrified me. My "Girl Dad" muscles kicked in and I kept you steady as can be, though. The other major accomplishment of this day was that you successfully received your PICC Line, and the nurse practitioner did it on the first try. The PICC Line was your central IV line, where you received fluids, medicines, etc.
Day 5: 4/25/21 - Your mom held you again today. This was the day we officially announced your birth to family and friends. Why did it take us so long? Well, those first few days were scary, and we just wanted to be sure you were doing well and being a healthy and growing girl. You got your first bow today, and Mom changed your diaper for the first time. I watched... You only peed in your diaper, even though your nurses were hoping for a poop.
Day 6: 4/26/21 - This was a monumental day, as you finally pooped. Your nurse Megan had said you might need to take a suppository to help you out, but you never needed it. You are truly Daddy's girl! Nurse Megan said she was "appalled" by what she found in your diaper. I have never been more proud! Maybe it was because we read some books to you for the first time... You already know what book I read to you first.
Day 7: 4/27/21 - This was a day that Mom and I were dreading quite a bit. At one week, all NICU babies have a brain scan to check for any past or current brain bleeds. These bleeds can tell doctors about any potential neurological conditions that babies might have down the road. Thankfully, your brain scan came back all clear. Not only that, but you pooped twice. To top it off, we got a chance to see your left eye for the first time!
Day 8: 4/28/21 - After the stress of the brain scan results, this day was relatively quiet and uneventful, which your mom and I came to appreciate during our time in the NICU. Mom changed her first poopy diaper of yours, and let me tell you something Charlie... I can see why Megan was appalled. Two words: hot asphalt. It was something ELSE! (I was very proud.) You also had a routine heart echocardiogram today, and they confirmed you had what was called a PDA, which is an opening in your heart arteries that many preemies have. The doctors expect it to close on its own! The heart echo didn't phase you... Just look at those wrinkly knees!
Day 9: 4/29/21 - Your ventilator settings went down on this day, which meant your lungs were visibly recovering from your pulmonary hemorrhage. The way nurses would check for this was with a method called suctioning. Basically, the nurses suction your lungs and check to see if there is any new blood. Often, the nurses would say your blood was "rusty," which meant it was older, a sign of healing. We loved seeing your lungs heal each day. Not only did your vent settings go down, but your feeds increased. And now that your brain scan was over, you could lay on your tummy when Mom was holding you.
Another monumental milestone was that I changed my first poopy diaper of yours. Compared to the poopy diaper your mom changed, you took total s**t pity on me, which I was thankful for. It was much more manageable than the diaper mom changed. Are you becoming a daddy's girl? I think so!
Day 10: 4/30/21 - Your feeds increased AGAIN on this day. You were now eating 15 mL every three hours. When you first started feeding, you were eating 20 mL a day, so now you're housing that breast milk like it's nothing! Way to go, sister. I was able to hold you on this day, and your mom and I changed two poopy diapers. Teamwork makes the dream work.
Now, when the nurses or your parents perform "care" on you, one person has to be there to "contain" you. Basically, one person puts their hands on you for comfort while the other is either A) changing your diaper, B) taking your temperature, C) taking your blood pressure, or D) anything else they might need to get from you. That's why you might see pictures like the one above that looks like I'm making a little house out of my hands for you.
Day 11: 5/1/2021 - What a big day for Charlie, as you were extubated! That means you came off the ventilator and were put on the NIPPV machine. This machine still provides breaths for you, but only when you need them, and it helps keep your lungs at a specific pressure. Plus, not having the vent in your lungs helps those little lungs get stronger! The only "bummer" about this machine is that you are less photogenic because you have to wear this mask.
Before the extubation process, Mom held you so you get into your "zen" as Nurse Holly called it. Then, Holly and Margaret, the respiratory therapist, took your vent out! Your feeds also increased, this time to 17.5 mL.
Day 12: 5/2/21 - Your feeds increased AGAIN, this time to 19 mL, which is considered almost a full-feed. And on this day, you got your PICC line out. You can actually see them working on that in the previous picture... That is not blood on your arm, it's betadine, and it helps keep you safe from any bacteria as the PICC line is removed. Mom held you again for a few hours, and your gases improved from the high 50s to the high 40s. When you were first born, you had to get a little prick in your foot to draw blood a few times a day. This blood was then sent to the lab to get tested for your carbon dioxide levels. As you've grown, the gases are tested twice a day, then once a day, as the doctors try to avoid pricking you so often. You always do so well when you're giving blood.
Day 13: 5/3/21 - Your mom and I both held you today, which was awesome and exciting. The nurses continue to laugh at your leg stretches. Just like dad, you love kicking your leg out from under the covers and stretching it out when you sleep.
When we hold you, we love holding a mirror so we can see your little face as you sleep or work on a poop.
Your belly, which had been measuring a bit big the past few days as your feeds increased, went down into a more normal range, which thrilled your parents. And we celebrated you being 28 weeks today! What a great day!
Day 14: 5/4/21 - Mom got a call around 7:30am from Dr. Dinh. We have been terrified of phone calls from the hospital ever since night two when he heard about your lung bleed, and this call did not help. The doctor said your blood sugar rapidly decreased, and they were going to test you for a possible infection. Yet, when we got to the hospital, you were your normal self, feisty, energetic, and happy. To account for the low blood sugar, your feeds were moved to a two-hour compression, meaning you were fed over a two-hour time period. Another big thing that happened today was that you received your first blood transfusion, and you did great! All preemies eventually need a blood transfusion because you get so much blood drawn for your labs. I was able to hold you after the blood transfusion, and you were real cozy. Then, the doctors came in and said that your blood culture had come back with two different bacteria, and the doctors thought you most likely had a Urinary Tract Infection. Because doctors are very cautious, they sometimes throw around scary words like "meningitis" and "lumbar puncture," both of which scare us. I know they are doing it to cover their bases and prepare parents for possibilities, but these things can be scary for NICU parents. Your mom and I try to remind ourselves that usually, the worst case scenario won't happen, and you will overcome these obstacles, which you have done countless times already. To test your urine, the nurses had to place a catheter in you. This took longer than expected since you wouldn't cooperate. Before the catheter was in, you peed and pooped twice. Then, once the catheter was finally placed, you had no fluids to pee out, so the nurses waited. You are so stubborn already. You were started on a few different antibiotics, and your mom and I stayed at the hospital until midnight, hoping for more information, before we called it a night.
Day 15: 5/5/21 - Even though we knew the blood and urine cultures wouldn't come back until the evening, Mom and I decided to come to the hospital early in case you were truly sick. Upon arrival, you were still acting like your normal self. We thought maybe they had just caught this infection super early, before you showcased symptoms. Still, it was a grueling wait. Finally, around 3:30pm, we got word that your urine culture came back clean. Then, in the evening, your blood cultures came back clean as well, which meant those two bacteria that had been found were simply contaminants. The roller coaster came back into the station after a few days of loop-de-loops.
Day 16: 5/6/21 - Nurse Holly was back, and because of your stellar numbers on the NIPPV machine, she knew you were ready to try CPAP, which meant you'd be breathing all on your own (the machine would only supply pressure for your lungs). You were a rock star right off the bat! When mom arrived, you were on "the bubbles," which is a totally different machine. Unfortunately, I wasn't able to see you on this day. See, when your dad gets stressed, he usually gets sick. It happens every year the first week after basketball season is over, and it happened on this day, after the stress of waiting to see if you had an infection. Out of precaution, I stayed home because your immune system is not very strong right now. But Mom sent a lot of texts, pictures, and updates, and we were able to FaceTime while Mom held you.
Day 17: 5/7/21 - I had to stay home again because I was sick, but Mom said you were very awake on this day! Both eyes were open and you were looking around the room. You were adjusting well to the CPAP machine. Every now and then, your oxygen levels would de-saturate (we know this because we constantly watch your numbers on the screen, which drives us insane). However, when you would de-sat, you'd come right back up on your own. You and Mom had some snuggle time and she read you some books.
Day 18: 5/8/21 - Again, I was home, but Mom visited and held you for three hours straight! That's a new record! This time, instead of reading your usual stories, mom read my letters to you, which she said you liked. You were steady as can be. Mom loves those days when you are strong! You were even trying to talk to Mom a bit!
Day 19: 5/9/21 - That brings us to today! I felt good enough to finally join Mom when we went to visit you. The first thing we noticed was that your nest was no longer humid! Now that you're almost three weeks old, your nest doesn't need to feel like a greenhouse. Mom held you for a while before changing your diaper, which was another big poop (daddy is so proud!). The doctors came around and said today would be a low-key day for you, and that your only job was to keep eating, sleeping, and growing! Not a bad day, in my opinion. Best Mother's Day ever.
Wow, Charlie! So much has happened in not-even three weeks. Your mother and I are in awe of your toughness and strength as you continue to grow. You've already changed so much. Yes, this journey has been a roller coaster and a time warp. It truly feels like we've blinked, and twenty days have gone by. The nurses are already talking about next steps for you: when you'll graduate from the Small Baby Unit, when you'll get your first bath, when you'll be able to wear your own clothes (Mom, Grandma K, and Gigi are VERY excited for that day!). You've accomplished so many things already, and you still have so much to do in the near future. We'll try to keep our arms inside the vehicle at all times as we hold on for dear life. Just promise you won't throw us for many more loops. Deal?
Love, Dad
Amazing....