Dear Charlie Bird,
I can't imagine what kind of thoughts are running through your head on a day-to-day basis. There are a bunch of baby books that your mom and I had been planning to read in the weeks leading up to your scheduled birth that probably explain your developmental milestones that you'll eventually hit, but when you decided to come early, Mom and I shifted to learning on the fly. You won't remember all of the dings, beeps, and alarms when you're older, so I thought I'd try to give you a sense for what your life is like at this moment in the NICU. You're now almost four weeks old!
As of this letter, you weigh a whopping 2 lbs. 8 oz. Your lowest weight after birth was 1 lb. 13 oz., so you've gained 11 total oz. in the past few weeks. But besides your weight, there are so many components that go into your care on a day-to-day basis. Here are some of the things that the doctors and nurses (and your parents) think about daily:
Feeding
This machine is how you get your food each day! Right now, you eat 24 mL of breast milk every three hours, and you are eating on a continuous drip, which means it is given to you constantly throughout the day to help you digest. Earlier this week, the doctors tried to move you to a 90-minute compression, but your little body is having a hard time keeping your blood sugar where it needs to be when you're not eating. Before you ate on the compression, you ate using a "gavage" technique, which uses gravity to slowly drip breast milk into your belly as needed. (I compared it to a beer bong, something you'll never ever use (or else you're grounded), and something I've most definitely never used, especially in my college days.) You see that orange tube coming from the syringe? That is your feeding tube, and you've had it in for the past few weeks. It's super flexible, so you don't even know it's there. The doctors can add different supplements to the breastmilk depending on your dietary needs. Right now, they add 2 mL of Prolacta, and 2 mL of Cream. This gives you extra calories and nutrients. Also, because you're in a clinical trial, you receive a syringe of either a probiotic (to help fight NEC, necrotizing enterocolitis, a scary condition that some preemies get in their intestines) or a placebo. Each day, the doctors decide whether to increase your feeds, add or subtract any additional supplements, etc. Then, the nurses oversee the changes, and it is all done with the hopes that you'll keep gaining weight and growing big and strong.
Like I’ve told you before, Mom is responsible for supplying you with all of your food. Mom pumps eight times a day for 15-20 minutes each time. But because you’re at the NICU, we have to label each bottle of milk that’s pumped. We write the date and time for each pump, then keep it in the fridge until we bring it to the Nutrition Room at the hospital. There, the milk is scanned into the system, and depending on how much milk Mom has in storage, the hospital staff will refrigerate or freeze the excess inventory. The hospital, thankfully, provides all of the labels and bottles that we need, so we have a stash at home and a stash here the hospital. Next to your bed, we have a cart, and the bottom drawer is used for storage. We keep extra bottles, labels, books, blankets, and toys in there for you to use.
Breathing
I don't think I'm going to knock anyone's socks off by telling you that breathing is important. Breathing on your own is one of the milestones you need to hit to be able to come home with us. I've told you a little bit about your ventilator that you had for the first ten days of your life. You're now on your third breathing machine, which is the CPAP machine, or "the bubbles." This machine has different dials and adjustments that the doctors and nurses can change depending on your oxygen needs. The amount of oxygen you receive is based on a percentage... "Room oxygen" is considered 21%, because that's how much oxygen is in our atmosphere (I am not a science teacher, so I am doing my absolute best). You often range from room oxygen to upwards of 28-30% oxygen. The CPAP machine you are on now keeps a minimum pressure in your lungs, but otherwise, you breathe on your own. The pressure to keep your lungs open is called the "PEEP." This can be changed based on how you're doing, and today, the doctors decided to bump you up to a PEEP of 8.0. Now, do I have any idea what this truly means? No! Because I am not a smart guy! But if it helps your breathing, then that's all that matters. The last few days, you've had a few "episodes" where you simply forget to breathe, resulting in the nurses needing to "stim" you, sometimes "vigorously," which basically means they rub your back or belly and remind you to breathe. Soon, your body will learn how to breathe on its own without reminder, and you'll be able to focus more on other things.
The Numbers
Mom and I call this screen "the numbers" and they are the bane of our existence. They are constantly in view, and they are a blessing and a curse, because they tell us how you are doing at any point in time. The green number is your heart rate. You are usually anywhere between 140-180 beats per minute. The pink is your oxygen saturation, and the goal is to be anywhere between 88-96. This number tells the nurses if you need to be "stimmed" or if your oxygen percentage on your breathing machine needs adjusting. If the number is over 96 for a while, usually your oxygen percentage will decrease. If you're having a hard time staying above 88, you may need higher oxygen percentage. But at the bottom, you can see the trend lines for each over a 10-minute period. See the pink line that craters like the Grand Canyon? That was one of your little "episodes." We don't like those. Early on, our nurses told us to not stare at the screen because "it'll make you crazy." We haven't done a great job listening to them. Here is Mom totally locked in to your numbers…
But we have become a bit more unfazed by drops in the pink number -- oxygen desaturations, or "de-sats." You still have these de-sats now and then, but we trust that you’ll bring yourself back up on your own at some point. The white number is your respiratory rate, but that number can be inaccurate so we don't pay too much attention to that. We have become numb to the alarm sounds over the past few weeks, although I can still hear them long after we leave the hospital.
Rounds
Each morning, the resident doctors and the attending doctor do their "rounds," where they talk about each baby in the NICU. Your Mom and I love to be at the hospital when the doctors round in the morning because it gives us a sense for any changes that you might encounter in your day. The challenge, though, is figuring out when the doctors round. They round anytime between 9am-11:30am. Sometimes, we show up right at 9am and wait two hours, other times, we show up later only to find the doctors already rounded. In the picture above, you can see the all of the doctors (with their computer carts) rounding on the different babies in your unit. The doctors talk in a different language, but Mom and I are quickly catching on to what is being said. They discuss your breathing changes, feeding changes, and even how many poops you have! Being here for rounds also gives your mom a chance to pepper the doctors with questions. I usually sit there and nod my head in agreement while my eyes glaze over from all of the numbers and data (be thankful your mom is there!!). If we miss rounds, the doctors will call us and give us updates every Monday, Wednesday, and Friday afternoon. We still get nervous about receiving calls from the doctors, but more and more, the calls are generally positive.
Care Time
Every three hours, you get some “care time,” which the nurses handle. Mom and I help when we are here, though. Your care consists of a few different things. First, they take your blood pressure. Next, you get your diaper changed, and sometimes, this even happens when Mom or I am holding you! (You can see that in the picture above… Watching the nurses change your diaper while Mom is holding you ranks right up there with any David Blaine-level stunt.) Each poopy diaper is weighed to keep track of your digestive system. Then, the nurses may change you from your breathing mask (which goes over your nose) to your breathing prongs (which go into your nose) or vice versa. You like the mask much more. Finally, the nurses may adjust your position. You may be moved to your side, your back, or your tummy. No matter the position, though, you love kicking your leg out to get more cozy.
Grading
Starting tomorrow, you will be 30 weeks. At that point, you will be “graded” on an daily basis to see when you are ready to transition from the Small Baby Unit (SBU). You will start “light cycling” tomorrow, which means you’ll start getting exposed to more and more lighting throughout the day. You will also need to transition to one-person care. Right now, during care time, you need two-person care, which just means you need to be “contained” by someone (out of comfort) while the nurse is changing your diaper or taking your measurements. Once you are comfortable with only one person caring for you, that’s another sign you’re ready to graduate from the SBU. You’ve already been in quiet, alert states for a few minutes at a time, which is a good sign. The biggest thing you need to work on is having fewer fluctuations in your heart rate and oxygen saturations. Over the next few weeks, if you can accomplish all of those things on the checklist, you’ll be moved to a different room, one that is brighter, maybe a little louder. But it’s a good sign for your development.
Other Services
The NICU offers all kinds of other services to help you and us during your stay.
24/7 Hotline - At any point on any day, Mom and I can call and get updates on you. The front desk connects us to your nurse, who provides us with an update on how you’re doing. Your Mom and I call a few times a day… 1) When we wake up. 2) Before dinner (especially if we decide to go out to dinner… this helps ease our guilt a bit.). 3) Before going to bed (Getting a good report before bed usually means we’ll get a good night’s rest). and 4) Any other time we need an update. The nurses are so great and never get annoyed when we call for updates. We are so thankful to be able to know what’s going on with you at any point in time.
Social Worker - Our social worker, Tessa, helped us figure out our work schedule, asking for leave, applying for your Medicaid, applying for your social security card, among so many other things. She loves checking in on how you are doing, and how we are doing as well.
Psychologist - Amy, one of the psychologists on staff, met with your Mom and me to see how we were doing emotionally. As first-time parents, let alone parents in the NICU, it was nice to talk about the emotions we were experiencing, how we were processing some of the trauma we’ve gone through during the past month, and to just vent a bit.
Physical Therapy - A few times a week, physical therapists come in during your care time to do some exercises with you. It’s amazing that you’re already doing workouts with the PT team, but you should still be in mom’s belly not using your muscles too much, so it makes sense that you need some attention in that regard.
Over the coming weeks, you’ll work with occupational therapists, developmental psychologists, feeding specialists, hearing and vision specialists, among so many other people. Again, your mom and I are amazed at the depth of care you’re receiving at HDVCH.
A lot of this stuff is a ways away into the future. For now, we just want you to keep eating, keep growing, keep breathing, and keep pooping!
Oh, and you can keep smiling too, like we saw this week.
Love,
Dad
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