Where We Stand

Dear Charlie Bird,

Your NICU journey has now surpassed the 100-day mark and it continues to climb. By now, your mom and I feel like mainstays in Area 12, as we know so many people, we know how things operate. Aside from Elinor and her family, you are the longest "tenured" baby in your room, and during this time, we have seen other babies come and go. Your mom and I have our routine down. We park in the same place (the first spots in the ramp so we can walk a bit), order the same coffee drinks (mom gets a grande Pike Place roast with two pumps of sugar free vanilla and a splash of 2% milk, while I get a grande Pike Place with whipped cream on top), and we even have a preference on which masks we like to wear. Actually, this is a bigger deal to me than it is to your mom, who loves to ridicule me for my complaints about mask quality... Regardless, here are the rankings:

1st Place:

I call this the "tri-fold" blue mask. It is sturdy, holds it's shape well, and lasts all day. This is, without question, the Cadillac of hospital masks.

2nd Place:

I call this the "center fold" blue mask. Notice how the pleats are different than the "tri-fold" mask (cue Ron Burgundy talking about pleats). This mask is slightly less structurally sound. It's not a bad mask, but if I have the choice, I am going for the tri-fold every time.

Last Place:

The dreaded "yellow" mask. This mask is trash. It is basically a folded up, discolored kleenex that loses shape quickly. It gets sucked into your mouth on every inhale. It makes your face feel super hot. It is horrible, and it deserves to be blasted off into deep space never to return again.

The masks are not where my trivial hospital gripes stop. For example, the "hold" music when we call for updates is triggering. Maybe I have told you about this music before, but it has not changed in the 109 days you've been alive, and all I am asking for is a little variety. The song is called "Lavender Skies" by Gary Lamb, and it is like nails on a chalkboard at this point.

Helen DeVos Children's Hospital... If any employees are reading this, I am begging you change up the hold music every now and then! If not for me, then for the future NICU families!

Anyway, enough of my ranting. Let's get around to what you've been up to the past few weeks.

Day 93: 7/22/21 - After writing your last letter, the number of feeds you took plummeted quite a bit. This sudden disinterest in eating drew the attention of the Occupational Therapists. The fear was that your disinterest in bottle feeding could be a sign of an eating aversion. We started looking for negative feeding cues, even though we felt you seemed more tired than anything. To make sure you were not getting overly stressed during feeds, OT implemented a PO limit of 15mL per feed (PO means "Per Os" in Latin, which means "by mouth"). The rest would be taken by gavage. Unfortunately, this disinterest caused a back-and-forth debate that lasted about a week and a half. You'll read more about that in the coming days.

Aside from the start of the feeding drama, you had a PT massage and you had bath time, both of which are some of our, and your, favorite activities.

Day 94: 7/23/21 - Today, your mom and I started learning how to put your feeding tube in so we could gavage at home. Now... When I see "put your feeding tube in," I am talking about literally inserting a tube into your nose and pushing it down into your stomach. We practiced on a doll that is about half your size.

Speaking of size, you passed the seven pound mark officially. I think it’s all going to your cheeks!

The reason we needed to practice first was because there is a chance the tube could go to a few wrong places if not inserted properly. First, the tube could go into your nose and out of your mouth. No fun at all. Then, the tube could also go down your breathing passage and into your lungs. If that happens, you turn blue and have trouble breathing. We have seen you turn blue one too many times, so we made sure to practice as much as possible before giving it a try. I think the thought of us inserting your tube scared you a bit.

Finally, today marked the start of the Tokyo Olympics. Our family had plans to go last summer before the pandemic hit, and this year, no fans were allowed to attend. Even if that weren't the case, we knew we were spending this summer with you anyways. To commemorate the opening ceremonies, the hospital did a challenge for families where we had to complete tasks to earn a prize. Luckily, the tasks were all things that your mom and I do on a daily basis, so your prize was an awesome "Team NICU" Olympic onesie.

Day 95: 7/24/21 - Mom came in in the morning to spend some time with you. Your feeding struggles continued. When Occupational Therapy came by to observe you eating, you chose to "play opossum" and fall asleep. This "playing opossum" for OT would become your thing, as you would continue to make OT's job hard for them by not feeding when they would come by.

Day 96: 7/25/21 - Today, however, you did end up eating well for OT. Because of that, they moved you from a "preemie nipple" to a "transition nipple" on your bottle, and upped your PO limit to 20mL. The difference between the "preemie nipple" and "transition nipple" has to do with the flow of the milk as you feed. The "transition nipple" allows for a faster flow, which means, in theory, you would not be working as hard to feed. A few of our nurses and OT thought that your fatigue and disinterest when it came to feeding could be attributed to you working super hard to get the milk out of the "preemie nipple." If you remember from the last letter, you were taking full bottles, and the thought process was that maybe you worked too hard on those feeds and wiped yourself out. You ended up taking two full bottles (20mL), but you didn't take any others.

Grandma K came to visit, and she helped with bath time for the first time, too. She loved seeing your little naked self.

Day 97: 7/26/21 - On this day, we celebrated your official "Due Date." Honestly, we can't believe we made it this long, and Mom still can't believe that you were supposed to STILL be inside of her until this day. If you had actually been born today, your birth measurements would have been: 7lbs. 2oz, 20.25" in length. While we hate to compare you to others, it is amazing that those numbers are "normal baby numbers." We continue to thank our lucky stars that you have been so healthy throughout your entire life. You have grown and matured into a full-blown, regular, newborn baby.

Your Uncle Teddy was visiting Grand Rapids, so he came in to see his favorite (and only) niece. Last time he saw you, you were battling your two-month vaccines, so he didn’t get a chance to hold you. This time, he was able to hold you for the first time.

Based on your face, you didn’t seem as excited as he was.

We celebrated your due date by going out to dinner with our neighbors Adam and Carrie (you will be fast friends with their girls in no time). We went to a tiki-themed bar called Max's. After dinner, we came to visit you and Nurse Megan on the night shift. Mom had practiced inserting your feeding tube for the first time earlier in the day, and she said she felt like she was "violating" you. According to Mom, her first try was "not so smooth," as she hit the top of your nose, freaked out a bit, pulled the tube out, then re-inserted the tube. The second try went better.

When we came to visit in the evening, it was my turn to insert the feeding tube. (The rule is that if a child is to come home on a feeding tube, both parents need to practice inserting a feeding tube twice before bringing the child home in order to feel comfortable doing that at home.) I think my attempt may have been aided by the rum-based tiki-inspired cocktails. Usually, I am super cautious and nervous when it comes to doing anything that could be considered "gross" or "scary." I think inserting a feeding tube through your daughter's nose is both of those things. Nevertheless, the rum helped me work up the courage to just go for it, and with the encouragement from Mom and Nurse Megan, I successfully inserted your feeding tube with no issues. (For the record, I only had two cocktails at dinner. They were strong, though. Liquid courage sometimes doesn't hurt.)

Day 98: 7/27/21 - Nurse Kate was here today, and you ate so well for both her and Mom, as you ate four full 20mL bottles in a row between 11am and 8pm. However, you had a stimmed alarm. I think I've told you this before, but in order for babies to be discharged, they need to go five full days with no alarms needing stimulation from the nurses. So, this alarm meant your clock reset for five more days. Despite your good feeds, OT continued to show concern that you were having negative signs during feeds, so they continued to push a swallow study.

The purpose of a swallow study is to see if babies may be silently aspirating, meaning the milk was getting into your lungs. This is something that you can't really know unless a swallow study is conducted. However, at the same time, typically other negative signs are prevalent (such as desaturations, decelerated heart rate, etc.) to point to that possibility. To your mom and me, as well as your primary nurses, we did not see any of those negative signs. But because you were going a number of feeds without eating anything, especially now that you were considered full term, OT continued to show that concern. The idea that you could be feeding in an unsafe way was beyond scary for your mom and me. We, of course, wanted to make sure that you were safe and healthy. You had been eating full bottles as late as last week, and now the thought that those feeds could have been hurting you was scary. Yet, at the same time, we did not see those other negative signs during your feeds. Yes, you were tired at times, but you weren't desatting or decelerating during feeds. Now and again, you would cough or have a little regurgitation, but usually you were able to get out of those little "episodes" with no alarms. So we were in a bit of a stalemate.

Day 99: 7/28/21 - Overnight, you ate two more 20mL bottles (at 2am and 5am). During your 8am feed, Nurse Holly said you tired out a bit. As she was taking the bottle away, you must have still had some food in your cheek. It went down the wrong pipe, and it caused a desaturation and a deceleration in your heart rate, but you did not officially drop below the heart rate that would be considered having a "brady." OT came around and this event further cemented, in their minds, the need to do a swallow study.

The thing to know about your mom is that she developed her "mama bear" mentality very early on. She has been your biggest advocate from day one, asking the right questions, defending you when necessary. She pays attention to the small details better than anyone else I know, especially when it comes to you, and she sticks to her guns when she feels her instinct is correct, which is usually the case. When it came to this swallow study, Mom felt that if you were silently aspirating, we would have seen the negative effects by now. Your mom also puts a lot of trust in your primary nurses, who feed you four times during each shift. If they think you aren't silently aspirating, that further cements Mom's instincts that you are perfectly fine. OT, on the other hand, is a small group who is responsible for helping all of the babies in the NICU with their feedings. Therefore, they can only come around and see you feed maybe one time a day, if that. And because you had been "playing opossum," OT had not seen you feed in a while, and was instead relying on your charts to try and figure out what was going on. Things got just a bit heated between Mom and OT, as both sides stood firm in their belief. It ended with a tense "agree to disagree," but with a general plan in place. Essentially, your nurses would only feed you when you were awake, alert, and cueing for food. Mom felt that there were times that you were simply too sleepy to eat safely, and those times could be the reasons for some of your alarms. OT continued to push for the swallow study.

One thing I will say about OT is that, although in this story, they come off as the "opposition" to your mother, their job is to make sure you are safe during feeds. They are not trying to keep you in the NICU, or awake Mama Bear from her hibernation. But doing a swallow study isn't something that we felt comfortable just doing. First, it is essentially an X-Ray image of how you swallow your food. Therefore, you would be exposed to radiation (not that that's a bad thing, it's just something we wouldn't mind avoiding if it wasn't necessary). Next, the swallow study is really just a snapshot in time. So if you weren't feeding at your optimal level, it could paint a picture that is not totally accurate. We would hate for this one feed to result in you needing a Gastrostomy tube (G-Tube) or something along those lines. On top of all of that, silent aspiration could also be a sign of prematurity in general. So your mom and I felt strongly that we thought you just needed more time to figure out your feeds and build up your stamina. Doctor Haines, the attending doctor during this week, agreed that a swallow study was a bit premature.

Day 100: 7/29/21 - The next day at rounds, the back-and-forth continued. OT continued to recommend a swallow study, but Dr. Haines stood firm in holding off due to your immaturity. You did not have the best day of feeds, and the thing that we noticed was that your belly seemed to be more upset than usual. You were constantly trying to poop and fart, and it seemed like you were having no luck whatsoever. Rather than sleeping in between your feeds, you were waking up due to your stomach, which resulted in you being tired for feeds. For OT, the times you were not feeding showed up as zeroes on your chart. But to your mom and me (and your nurses), it was clear that those zeroes were because you were just too tired to feed. Our biggest gripe with OT was that they were not physically watching you feed, which can be attributed to a combination of them being extremely busy and you playing opossum when they would come to see you. But our frustration came from the fact that you did not seem like a priority. OT was only trying to come once a day, and when you didn't feed, it felt like a failure to your mom and me, which ultimately put a lot of pressure on feed times. When we voiced this to OT, they reassured us that there was no pressure. Nevertheless, it was frustrating for us because just last week, we had been talking about "home," and now we were possibly looking at a serious feeding condition. Still, your mom and me held firm in our belief that you were tiring yourself out from fighting that belly of yours. The evidence of this was clear after Nurse Rita had you overnight. She said that after pushing for a while, you finally filled three full diapers with poop, then proceeded to eat two 20mL bottles in a row. To us, this showed us that once you cleared out your stomach and figured out how to deal with your gas, you were wanting to eat. Now, it was just a matter of time before we could successfully line up an OT visit with a bottle feed.

Day 101: 7/30/21 - We got that successful meeting this morning when OT came in and witnessed you eat 7mL. You were cueing for food, you latched successfully, and ate beautifully for a bit before you started fighting your gas again. OT was happy with the feed, and they didn't see any negative signs aside for your gassiness. To Mom and me, we used this as evidence that the times you weren't feeding was more because of your gas, and less because you were averse to feeding. We stuck with the plan to only feed you when you were wide awake and cueing for food. OT was gone throughout the weekend, so your mom and me could really focus on you and those positive feeds.

To help combat your gas, we had PT come in to give you a massage. This seemed to relax you quite a bit which helped you get some sleep. Massages are always funny, especially when we get to see your plumber crack in all its glory.

Day 102: 7/31/21 - With OT gone, we did not feel as much pressure when it came to your feeds. However, it did not help that your gas was still really bad, resulting in a pretty poor day of feeding overall. You took two full 20mL bottles at 5am and 5pm, but no others throughout the rest of the day. We asked if there was anything we could do to help you with your gas, and the general answer we got was that babies are gassy, and you need to figure it out on your own. Still, it was not fun seeing you push and push and push, as you were so uncomfortable, resulting in you being tired.

Day 103: 8/1/21 - The rough weekend continued as you had another stimmed alarm. You started the morning off decently strong taking 11mL and 12mL for your 2am and 5am feeds respectively. However, once we arrived, it was clear that you were too sleepy to eat, and you were still wildly uncomfortable from your gas. One-hundred-and-four days in the NICU can really take a toll on parents, and we reached that point in trying to figure out the cause of your discomfort for ourselves. Our working hypothesis was that your blood pressure medication, amlodipine, was causing your upset stomach and sleepiness. You receive two doses of amlodipine a day, one in the morning at 8am, and one in the evening at 8pm. And based on our observations, the times that you ate most often were your 5am and 5pm feeds. Our hunch was that your meds would be wearing off by that point in your day, and that is when you typically had the most energy to eat. We became obsessed with this idea, to the extent that we had Nurse Angela help us plot out all of her feeds over the past few weeks, and we looked for trends.

Google confirmed that side effects for amlodipine included drowsiness and an upset stomach. When we presented our findings to Nurse Kate and Nurse Brooke, they could sense our desperation, and instead offered other alternatives. Looking back, we were just hoping to figure out a way to alleviate your pain. But I can also see how we came off as a little intense during this time. God bless Nurse Angela for putting up with our questions. Kate and Brooke talked us down a bit, instead offering up the alternative that maybe you were just pooped out, as babies can do that when it comes to feeding in the NICU.

Day 104: 8/2/21 - The next morning, you ate for Nurse Holly (a different Holly than your primary nurse) at 8am. During rounds Dr. Langen was so impressed with your feeds that he increased your limit to 30ML. He reiterated the idea that it was still too early for a swallow study and in true Charlie fashion, you proceeded to confirm that by chugging your 30mL bottle for OT (finally) in less than 10 minutes. You followed that up with another 30mL feed at 5pm. On the night shift, Nurse Megan tried the "preemie nipple" (which has a slower flow) and you proceeded to eat two straight full 30mL bottles. Times like these are why we love our primary nurses. Megan has been with you since you were born, and she thought that perhaps the transition nipple left too much milk in your mouth, causing it to go down the wrong pipe now and then. Now that you were older and stronger from the first time you took the preemie nipple, you had more stamina and the flow kept you from overfilling your mouth. Just like that, we had some positive news around your feeds, which was a relief to your mom and me.

To celebrate the positive feedings, we had some fun with you and Megan. First, we gave you a bath. This time, I did the majority of the scrubbing to get all your “fromunda cheese.”

I would say you had a good time!

After the bath, we played dress-up. A few weeks ago, Child Life came around and asked your mom if she wanted to make you a tutu. She did, but for the longest time, forgot to bring it in. When Child Life reminded us, we thought we might as well bring it in tonight. We got a kick out of you with your orange and yellow tutu.

You seemed to question why you were wearing such a ridiculous item of clothing.

Things really got out of hand when we put the tutu on your head.

It took every ounce of self-control to not lift you above my head, Rafiki-style, while blasting the Lion King soundtrack.

Day 105: 8/3/21 - Today, you had yet another eye exam. If you remember from last time, your blood vessels in your eyes were developing well, and this eye exam only confirmed that. The ophthalmologist found no disease, and she said your blood vessels were just a few millimeters away from where they need to be, which is great news because that means your next eye exam on August 24 should be your last one.

Dr. Langen said, during rounds, that he it was "incredible" that a baby born as early as you had absolutely no disease (Retinopathy of Prematurity or ROP). I told him that it must be due to your mom's and my perfect vision, making sure to wipe my glasses clean as I delivered the joke. Dr. Langen and the residents enjoyed my "dad joke" and your mom almost divorced me on the spot!

On top of your eye exam, you had a head ultrasound. You had one of these way back when you were only a week old. This ultrasound was strictly routine, as typically the hospital does these to follow up on babies when they go home, or around their due date. The brain scan, like it did all those weeks ago, came back "normal." While this is not surprising, it is always relieving to hear good news, especially when it comes to brain development.

You continued to have some great feeds with the preemie nipple, and the doctors were very encouraged by your progress.

Day 106: 8/4/21 - Today, the doctors upped your PO limit to 40mL. You proceeded to eat at the following times: 2am (30mL), 8am (30mL), 2pm (40mL), 5pm (40mL), 8pm (40mL). Not only that, but you were waking up and you were more alert for your care times, and your gas seemed to be a thing of the past. Perhaps you just needed to learn how to deal with that gas (just fart, sister!).

Your Granddad came to visit you again, too, so you two were able to get some snuggle time.

Day 107: 8/5/21 - You started the morning with two 30mL feeds at 2am and 5am. I cam in for the 11am feed and you went out to chow your whole 40mL bottle. PT came for another massage, which you enjoyed, and OT came to watch you eat, which you did not do. You continue to give them a hard time by playing opossum. However, OT was highly encouraged by your recent feeding successes, so much so that the swallow study seems to be entirely out of the question at this point. Mama Bear was happy to hear that her hunch was correct. But again, we can't be mad at OT for them recommending what they thought was best for your health and safety.

Dr. Langen came around later to let us know that your PO limit was eliminated, meaning you could take your entire feeds by mouth if you had the stamina and energy for it. Anything you didn't take by mouth would still be fed via gavage. Again, he was so thrilled by your progress.

Your bedding for the day came from Birdie, so we had to send her a picture of you all curled up.

Day 108: 8/6/21 - Last night, the nurses performed the car seat test, meaning you had to sit in your car seat for ninety minutes without having any alarms. You passed with flying colors. You actually were wide awake the whole time you were sitting in your car seat, to the point that Nurse Megan said she could see you staring at her from across the room. This test is good for two weeks, so if you do not come home before then, you'll have to do it again.

Nurse Kate had you on the day shift today, and when we walked in, we found you two like this:

Kate kept getting bumped off of your assignment, so we were thrilled to have her back in the room, and you must have been happy too, because you ate 41mL with her during your 8am feed.

You took a few more feeds for your mom and me, taking 30mL for your mom at 11am, and 38mL for me at 2pm. Prior to that, I practiced inserting your feeding tube again (checking off the second time I needed to do that). I did not have as much success this time. The first try, it coiled up in the back of your throat, causing you to gag quite a bit. The second try, I inserted the tube and then felt something tickling my wrist, only to discover that the tube had come out your mouth, much to my horror. Finally, the third try was successful, as you helped me by sucking on your paci. Sorry about those first two tries! Do NOT roll your eyes at me, young lady!

This past two-week stretch was the most difficult for us since probably your infection scare when you were in the small baby unit. I think it is because we had heard the word "home" and started to get really excited about the possibility of bringing you home. But in that excitement, we forgot one crucial thing: we are on your timeline, not ours. Your struggles with feeding showed us that you were not actually ready to come home. And as frustrating as it was to seemingly being so close, we are now thankful for this extra time in the NICU as you worked out your gas, feeds, and other bodily functions. After all, when you eventually come home, we want it to be for good. We want you to be safe, healthy, and ready. I feel like I jinxed you last letter by talking about "home." Like Michael Scott said in "The Office"...

We had told so many people that you were coming home, so when that didn't happen, it was difficult receiving texts asking if you were close. Of course, those texts and calls only show us how many people continue to care for you from near and far (you have received almost 30 letters from family and friends -- and if others want to send more, they can see our address HERE), but it was still hard to explain that you weren't ready yet. Therefore, your mom and I are done trying to forecast your homecoming. We will be ready whenever you are ready.

We love you so much, Charlotte!

Love,

Dad