NICU

8 Memories for 8 Months

/ bperica / 2 Comments

I had wanted to sit down and write this on London’s actual 8 month birthday, but I’ve been very busy this last week and a half painting a bathroom on the main level of my house. This was no ordinary paint job either. The primary color, Loyal Blue, from Sherwin-Williams had a really hard time covering the tannish color of the bathroom. Four coats. I painted four bathrooms, they just all happened to be the same one. One wall is striped with SW’s Citrus color and their high hide white. Now that that’s done I can once again return to writing a little more regularly, but now I throw in some obligatory before and after shots of my handiwork.

Before:

IMG_4978

Pictured: the bathroom on our main floor before I spent a week in it.

After:

IMG_5053

Boom. Nautica, if you find this blog, I just wanted to let you know that it does look like I copied the color scheme of every piece of clothing you have ever made, but it was just coincidence. Promise.

Onward.

As I think of each month of London’s life so far they are all so distinct in my mind. Naturally, there are some moments that always come to the forefront, like London’s extubation in month 1 or her discharge day in month 4. But for this post I wanted to write about the less obvious memories from each one of these awesome months. Here goes…

Month 1

Crazy. Crazy is knowing you’re about to introduce someone to their first grandchild. As my father-in-law followed me into the NICU on the day of London’s birth, he could not exactly see where I was leading him. As I arrived at London’s isolette I stepped to the side and Tim got his first glance of my daughter, his granddaughter. I put a hand on his shoulder and the first words out of his mouth were, “She’s perfect.”

I don’t know what I expected to hear from him. It’s one thing introducing a full-term baby to someone, it’s another thing altogether to present to someone their granddaughter weighing in at 2 lbs, skin and bone skinny, draped with wires and tubes, and plugged into intimidating machine after machine. To hear someone say, “She’s perfect,” after seeing all that was exactly what I needed to hear at that moment. Tim probably didn’t intend to make such an impact with those words, but had he thought about them in advance he couldn’t have come up with something better.

Month 2

IMG_3230

 

This month we started to dress London in clothes. Her skin was tougher. She wasn’t vented anymore. It was still one hell of a task to put an outfit on her, but I discovered I loved dressing her. Still do. This was the first time I remember her being in an outfit. The picture doesn’t do this outfit justice. As you can see her outfit appears baggy, but if I go into her closet right now and find this in the pile of preemie clothing we have I will be astonished at its size. It’s hard to believe she was small enough to ever fit it. London has an incredible wardrobe. Every day I get a little excited about choosing her outfit for the morning. Of course, I have to yield to mom’s choice some days.

BONUS Month 2 Memory: Like every other day, I was sitting there with London, doing kangaroo care in the recliner that every NICU pod has, but today the recliner was reclined more than usual. I carefully tried to adjust the incline of the seat without disrupting London’s sleep or pinching the tube on her CPAP, but nothing was working. The seat just kept reclining and reclining to the point that if I didn’t extend my right arm to firmly grasp the end of the armrest, the chair was going to tip backward. So there I sat for 40 minutes or so. Right arm keeping both London and I from falling backwards. Left arm holding her steady on my chest. Body rigid so as not to disrupt our balance. Silent. Just waiting for Megan to come check on us so she can help us out of this broken seat.

Month 3IMG_3571

My dad holding London for the first time on April 3. This was also when my mom first held London. London’s fingers were still the size of the finger nail on my dad’s index finger. When you have a preemie, one big adjustment you have to make right away is not getting to hold your baby for a while. Grandparents had to wait much longer. Friends had to wait until London was out of the hospital. A lot of what people associate with having a baby is greatly delayed. As a NICU parent, you quickly grow accustomed to all big events arriving at a snail’s pace.

Month 4

Kate’s dad and sister were in town one weekend. It was a Sunday and they were headed back to Wyoming. They had gone ahead with Kate to the hospital. I stayed behind, taking care of some things at the house and would possibly join them later. As I was walking up to the front doors of the hospital I saw Tim and Kendra. We had a brief conversation and said goodbye, but I knew something was not right. I got upstairs to London’s pod and could see it in Kate’s eyes. I sat down next to my two girls and waited for our primary nurse, Megan, to come in and explain to us the next NICU obstacle.

What stands out about this day is instantly knowing from my conversation with Tim and Kendra that I was about to get disappointing news and that when I heard that news from Megan, it was the first time I cried in front of her. The curtain was open, I’m sitting there with my back to the window, facing out into the rest of the NICU and wondering after all this time if we were ever going to get out of this place with a healthy, strong daughter.

Month 5

IMG_2552

This was the first full month that London was at home with us. To narrow all the memories down to one particular moment does not mean that the selected moment is better than all the rest that month. I’m just going to go with mornings for Month 5. It was still early summer, so the cool morning air coming in the windows made it especially hard to wake up after also waking once or twice during the night to feed London. This was one of those days when Kate took care of the early morning feeding and I, still holding onto the belief that if I kept on sleeping I would eventually catch up to the lack of sleep over the last five months, kept on sleeping (as you can see). But there’s no catching up. Look at London’s face. She knows it. She thinks it’s funny.

Month 6

IMG_4437

Going out on the Flaming Gorge Reservoir. It’s something that we do every summer, but this particular day, was the first time we left London with anyone for more than an hour. Kate’s mom watched her and we went out for some tubing and fishing. We had to let go for a few hours. Letting go after such a long and traumatic NICU stay is, without a doubt, one of the hardest things for NICU parents to do.

Month 7

IMG_4721

That time she fell asleep while doing the “pull-my-finger” joke on herself.

Month 8

_BKP3378

 

Establishing traditions. We met my parents in Breckenridge two weeks ago. Breck is a Colorado mountain town Kate and I love to visit. This was London’s second trip to Breck, but this time it was more relaxed and she was much stronger. Some traditions you welcome new family members into and other traditions are established once that new family member arrives. This was the former, but I know that this tradition will look much different in the future as London grows up and wants to do more and more activities. We’ll have her biking up Swan Mountain Road in no time.

 

Busy, Writing, and Travel

/ bperica / Leave a comment
_BKP2849

Taken the weekend of our first overnight trip with London.

It’s been a busy week around here and I’ve not found the time to sit down and write a new post, for which I have some guilt and disappointment. This is the toughest thing about keeping a blog like this. There is so much material to delve into, but not enough time to do the delving. On certain days, not getting the opportunity to do that really stings.

We are going to the mountains tomorrow for a couple of nights. My parents are meeting us there. We hope to catch some fall color and to just be away from Denver for a little bit of time. Writing that reminded me of the shock I had in May when I realized that I had not been out of Denver for more than a few hours since London was born. There was one short trip to Fort Collins for a baby shower. That was it. If I had mapped my location during the three and a half months London was in the NICU, you could see a very heavy line from home to hospital and then tiny little branches breaking off from that. Each brach representing a trip to a restaurant, grocery store, or a coffee run. I kid you not, there was no more variety to my destinations for 109 days. Hospital, home, restaurant, grocery store, and coffee shop.

Now that London is home we get a little further out from the house and with greater frequency, but it is still a challenge to compare our range now as a family versus what it was a year ago. Luckily, as London ages and strengthens our travel radius from home will lengthen out to something closely resembling the old, have freedom, will travel, spirit of the pre-London era.

NICU Bragging

/ bperica / 3 Comments

I don’t know what else to call it, but NICU bragging. It’s an odd thing, something Kate and I became aware of while London was in the NICU, but something that really reared its ugly head once we were out and could take London to public places.

As emails went out to notify friends and family of London’s emergency birth and her condition, we started to hear back from all sorts of people. Those who had had preemies themselves did share some of the most useful information, but every once in a while there would be a line dropped in an email or spoken in conversation that, while perhaps not ill intentioned, would sound a little like bragging. Typically, these lines would be in response to us sharing London’s gestational age at birth (26 weeks, 4 days, but rounded down in the NICU to 26 weeks) or her birth weight (2 lbs, 6 oz).

IMG_4078

My girls.

In response to the gestational age, people were eager to share if their son or daughter (or relative) was born earlier. In response to the weight, people were eager to share if their son or daughter (or relative) was born weighing less than London. Initially, it was a little bit comforting to know that there are preemies born quite a bit earlier and lighter than London who can turn out fine, but not too long after London was born I had a hard time interpreting these comments as anything but diminishing our particular situation. In some cases, I knew people were trying to comfort us, but with others I said little in response to them about our preemie and NICU experience, hoping they would sort of get the hint and walk away.

I found that the comments in response to London’s birth weight were the most bothersome and they nearly always contained a detested title, micro preemie. If you’re wondering, a micro preemie’s birth weight is less than 800 grams (1 lb, 12 oz) or with a gestational age of less than 26 weeks. More often than not, I felt like micro preemie was shared in conversation with us as if it was the highest commendation a preemie could receive and it was delivered with a tone that implied one thing, our preemie has had it harder than your preemie. Nothing irked me more than someone referring to their preemie as a micro preemie merely because it was born weighing less than London but its gestational age older, like 28 or 29 weeks, or even later. From what I was told in the NICU, from nearly everything I have read, gestational age is more important than weight. Of course, being bigger than average at 26 weeks, like London was, is a huge benefit, but staying in the womb even for just one more week would have been vastly more beneficial for London. So, if someone told me they had a micro preemie, but it was born at 29 weeks, the only thing I cared about was ending our conversation.

Before London left the NICU, we had to attend a discharge class with other parents whose baby or babies were going to get out soon. Naturally, we all sit there and talk a little bit about our circumstances before the nurse shows up to teach the class. Most of the conversation centers around birth weight, gestational age, and length of NICU stay, i.e., the premature baby’s big three. By the time Kate and I sat in on this class, London was the veteran of the NICU, with over 100 days under her belt, and we were very much aware of NICU bragging. Thus, we were sensitive to parents, for example, who spoke about their three-week NICU stay stretching out to what seemed like three months. In our NICU class we did not share one of the big three stats because we did not want to give the impression to anyone that we were diminishing their own private and frightening experience.

Parents of preemies always find one another in public. It’s rather easy for us, we see a baby out and about with oxygen or an NG tube, and we know part of the story even before we talk to the parents. We have been approached by parents of preemies nearly every time we take London out to the mall. The parents approaching us to ask about London are eager to hear a little bit about her story, but mostly they are very eager to share their own. Some of these folks just unload a life history on us even though we met them thirty seconds ago inside a Nordstrom. For Kate and I, with our somewhat introverted personalities, this can be uncomfortable, to say the least.

As you can imagine, such encounters are even harder to avoid when going to a special care clinic at a children’s hospital. Last week, I overheard a conversation that must have started when one parent spotted another baby on oxygen.

“Oh, was he a preemie?”

“Oh yeah, 28 weeks.”

“What’s that, 3 months early?”

“Two and a half.”

“Ours was 3 months early.”

End of conversation. I felt like the parent whose baby was born three months early was just looking for the quickest route through the conversation so he could say, “Ours was 3 months early,” and then walk away. That’s precisely what happened. I’ve seen this a lot. It’s NICU bragging.

It is important for parents of preemies to talk with one another, to share their unique stories, but to share the big three stats and walk away, well, that does no one any good. As Kate and I have grown into being parents of a preemie, we have become increasingly conscious of this truth when talking with other parents of preemies. We would love to share with you London’s gestational age, weight, and number of days in the NICU, but only if you ask. We know there are preemies who were born earlier or later than London, born heavier or lighter than London, and stayed in the NICU longer or shorter than London, but that does not necessarily mean their time in the NICU was automatically easier or harder than London’s. A preemie’s care and progress can be influenced by many factors and is vastly complicated. This truth is never fully borne out by sharing the big three stats. We will do our best to never start a conversation with them.

Baby Kale

/ bperica / 1 Comment

Two weeks after London was born I was foraging through the refrigerator for anything edible. We hadn’t been able to go grocery shopping since Kate was pregnant. I was not hopeful about what I would find, but why not try? If I found something, then maybe I would cook a meal at home. At this point we were living off meals delivered to our door while we were at the NICU.

As I moved condiments aside to see to the back of the fridge, I spotted something. It looked like lettuce before I saved it from the depths of the Kenmore, but it didn’t need saving, the package of baby kale spoiled at least a week prior. However, this was much more than a package of spoiled lettuce. I bought it before London’s birth so it was a relic of my former life. Standing there, holding the baby kale, I could picture the day I bought it. It seemed like ages ago. It was just a trip to the grocery store and the now yellowing leaves of baby kale made me yearn to be in that place again, where I was simply gIMG_3979rocery shopping without, in hindsight, a care in the world.

The baby kale linked me back to this person who I no longer was, a person I didn’t have the time to say goodbye to. Not only a person, but a lifestyle too, that in the weeks following London’s birth I mourned. In a way, as expecting parents, you have nearly ten months to transition from one lifestyle, the one with no kids, to another lifestyle, that of parenthood. One of the toughest things about having a preemie is that those remaining three months (in our case) were lopped off with no warning and in six hours you are thrust into an experience so beyond what you could have imagined. An experience with terrifying responsibilities and with horrific consequences.

There are of course things around our house that Kate and I bought long before London arrived, but the baby kale brought me back to the pre-London era like nothing else could. As I dropped the kale into the trash, I was not simply letting go of spoiled food, I was letting go of a past, one I could no longer identify with and letting go of a self I could barely remember being.

Born in the USA, Raised in the NICU

/ bperica / Leave a comment

London is a remarkably happy baby. She tolerates so much and cries very little. We hear this from nearly everyone London meets. I tell them I have a theory. For the first 3.5 months of London’s life she had medical professionals treating her around the clock. In addition to the diaper change, temperature check, and respiratory check every four hours, she was also interrupted with head ultrasounds, echocardiograms, at times shots, the placing of a new IV line, and physical therapy. This is the NICU norm. For the baby, they assume this is what life is like, this is how all babies live out their early days. So, what is crying going to do?

That is the attitude London embraced. To make London cry now, you almost have to give her an ROP exam. Her frightening start and all the procedures that it necessitated made her one tough babe. I like to think that most long-term NICU babies also graduate as super tough and tolerant little things, but I have a few reasons to believe that that is not the case because all too often nurses would tell us how amazing London is with a shot, for example, when she would barely cry for one second in response to the needle, but the boy next-door would wail for a couple minutes.

In a way, the NICU schedule of around the clock treatments or feedings continues when some preemies come home. Usually with full-term babies it’s the baby waking the parents up, but with preemies, it is quite often the parents waking the baby up. Whether it is a feeding time, a cannula check, a breathing check, or just a general are-you-alive-over-there check, London’s day and night were interrupted by her parents for quite some time.

Below are some pictures and a video that only give you a sliver of the stuff London and other preemies endure at the NICU.

_BKP2294

One of the less intrusive procedures, an echocardiogram when London was not even a week old. This one revealed a PDA, which was resolved over the two weeks following this echo.

IMG_1990

As London’s lungs strengthened, she was placed on CPAP. Of course, I loved the progress, but I had a strong dislike of CPAP because it covered up most of her face. It was nearly impossible to see both of her eyes from the same angle when she was wearing her snorkel-like attachment. It drove me crazy, but London, always so chill, tolerated it like a champ.

_BKP2551

An every four-hour checkup on London, one of her “cares.” This particular picture was taken during London’s three-chin phase of life.

It was May by the time of this echo. As you can see, it’s no big deal to her. She’s about ready to fall asleep mid-echo while nurse Eileen chats away in the background about how busy the NICU is that morning. We thought London was done with echocardiograms by this stage, but the doctor ordered another battery of tests to see why she was so tired and not eating. On this particular day, day 95 in the NICU, it was London’s peaceful state of mind that helped calm us down.

The Eyes Have It

/ bperica / 1 Comment

London’s first ROP (retinopathy of prematurity) exam was around 8 weeks after she was born. From the first time someone mentioned the ROP exam, they made it sound like something that we, as parents, would not want to stick around for. Kate always heeded that advice. I did not.

After London’s eye exams revealed Stage 2 ROP, I knew avoiding them was going to be impossible. They were happening once a week and, as with every other procedure, I decided that I wanted to be with London through it all. I did not want to shield myself from what she was enduring. If I did not watch the exam, I would feel out of touch with her care and progress.

When it was time for London’s next exam, I had just put her back into her isolette. I informed the doctor that I was going to stay. “Okay, stay seated, because I’ve had a dad pass out on me before,” she said.

I stayed in the chair even though I was confident I could stand up and get a better view without passing out and hitting my head on the floor.

The nurse that day gave London some sugar water or “sweeties”, designed to distract London from the imminent eye invasion. When the nurse had an arm on each side of London and her hands holding London’s head firmly in place, the doctor placed the miniature eye speculum. London squirmed right away, but she didn’t start wailing until the doc was looking in her eyes. I had never heard London cry like that.

Now, having watched so many eye exams, the noise London makes when her eyes are being examined is the hardest part of being there. The speculum and the probing with other tools looks quite unpleasant, but I promise you it is the noise that is the worst. It is a traumatic enough burst of screaming that an adult might only make it if they were being slowly stabbed again and again.

It is nearly enough torture for the parent to hear as it is for the baby to endure. Once I heard her scream like that I knew the sound would be with me forever. But, as I sat there and watched eye exam after eye exam, I tried to absorb as much of London’s pain and fright as possible. The eye exams became a unique way for London and I to bond.

As soon as the eye exams were over, the nurse would hand London back to me. She would immediately stop crying, look up at me, and immediately rest her head against my chest.

Last week we endured one last ROP exam together. If London had to have another exam I am not sure how the doc and her assistant would be able to contain London’s thrashing and kicking. One last time I attempted to share in the pain with London by being by her side and one last time I had the privilege of comforting her as soon as the speculum was pulled away.

Real Time Update

/ bperica / 1 Comment

I haven’t given an update about London’s health and growth in a while. Since we just saw the doctor today, now’s a good time. 

London is just over 7 months old now. Her corrected age is just over 4 months. 

She weighs 17 lbs. That a girl. 

She is just shy of 27 inches in length. 

Last week, she had her final ROP eye exam because her eyes have fully vascularized. I am so glad I don’t have to watch another one of these exams.

As of today, we can have her off of oxygen whenever she is awake. She will need oxygen when sleeping at night or napping during the day for quite a while still, but this is huge progress. 

When we were sitting in the doctor’s office today, the pediatric dietitian looked at London and said, “Are you sure she is a 26 weeker?”

A few of you have been asking about the enterovirus scare going around Colorado and much of the Midwest. We aren’t taking any extra special measures for now. An employee at Children’s did tell us that they aren’t allowing inpatient visitors at Children’s right now and that many people have postponed their child’s outpatient appointment. London is not supposed to have contact with babies or kids. This is the way it has been since we brought her home so no changes there. As always, we have plenty of hand sanitizer around the house. I think we’ll be just fine. 

London will get a standard flu shot, but she will also receive Synagis for RSV (Respiratory Syncytial Virus). She’ll be getting all of these within the next month, staggered of course. 

One last thing, if you’re planning on holding London and visiting with her at any point this flu season, you just have to get a flu shot. No flu shot, no London time. Flu shot, London time. Pretty easy decision if you ask me. 

Happy to share this update on London’s progress!

More Baby Time

/ bperica / Leave a comment
IMG_2925

DOL 2: Eyes still fused shut.

How long is a baby considered a baby? Yeah, I just googled that because it feels like London has already been a baby for so long. The Google consensus is that a baby is a baby from one-month old to less than two years. Prior to a month, a baby is a newborn, although I never referred to London as a newborn when she was less than a month. She was a baby. Still is. And, I guess, she will be for quite some time still.

I suppose it feels like she has been a baby for so long because we watched her last three months of in-utero development outside of the uterus. By three-months, most babies are doing something new each week, maybe even rolling over. London was still doing something new each week, but at three-months she was still struggling with eating. Watching that development outside of the uterus is special. Not many parents get to watch their baby struggle as they open their eyes for the first time (which usually happens in the seventh month of pregnancy). But Kate and I were standing right there as the seal broke and London’s eyes flickered to life right in front of us. It is those moments that make London’s seven months of life stretch out to a year in my mind.

I know, among parents of preemies, I cannot be alone in marveling at the changes that can happen in 7 months. But I am also pretty sure most parents of full-term babies are also astonished at the changes 7 months can bring. Naturally, that feeling is more intense when the starting point is three months earlier and seven pounds lighter than you were expecting it to be.

The Header Image

/ bperica / Leave a comment

Just a quick story about the header image. It is a panoramic shot of London’s second room in the NICU. This is really the penthouse of the NICU. When we moved from our original pod to this one it felt like going from the ground floor to the fiftieth floor. It’s 1.5 times the size of our first room and it is the only room in the NICU with a whole wall of windows. Our first room had no windows.

I was hesitant when the room opened up and it was first mentioned to us that we could possibly move in there. This was the room that was opposite our first room. I wrote about it in this post. So, you understand my hesitancy.

One of our primary nurses had one stipulation about our move into this room. She said that everyone else that gets that room always ends up pulling the shades and blocking the only flood of natural light the NICU gets. If we were to move in there, we would have to promise her that we would only have the shades down in the morning when the sun is unpleasantly shining straight into the NICU’s eyes. We promised. I got over my initial hesitancy and we made the move, knowing that we had well over a month left in the NICU so why not upgrade for free?

The move was one of the smartest things we did while London was in the NICU. We were there for quite a bit longer than we thought we were going to be. We fell in love with that room, as much as one can fall in love with a hospital room.

Toward the end of London’s NICU stay, there was a leak in the ceiling in London’s room and we had to give it up for just one night while it was fixed. The next morning I came back to the NICU and London was in her temporary room, which was much further back in the NICU. No natural light made it there. Everyone was pale and had a depressed look on their face. At least, that’s the way it seemed after living in the penthouse for so long. I only had to sit with London in that room for 40 minutes, but that was more than enough. I pushed her back to her pod with a nurse and it was like stepping out of a tunnel into a glorious sunny day.

We are so thankful for that upgrade.

Blinded By The Light

/ bperica / 1 Comment

Last night, Kate and I watched some old videos of London in the NICU as we were falling asleep. We did this every night while she was in the NICU. Now, not so much, because we can get out of bed and walk twenty feet to her crib and there she is, sleeping so peacefully. As we scrolled through old photos and videos on our camera roll, we happened upon this one…

IMG_3100

 

Kate said, “You should write about this picture and the bili lights.”

“Okay,” I said. But it took me a few more minutes to figure out where I could go with a post about this picture. First, I should just tell you about the picture, it is of a very small stuffed animal (beany baby size) wearing the goggles that London wore while she was under the bili lights. We have a couple of these BluBlockers because the nurses thought London was done with the bili lights and then she went back on them after we had taken the first goggles home.

These goggles were addicting to me once they were home because I could, whenever I would pass them in the living room, pick them up and smell them. Their smell transported me back to London’s room. So when these goggles came home, it felt, for the first time, like we had brought a little bit of London home with us. Before bed I would inhale deeply from the goggles. When I got downstairs in the morning I would take another hit from the goggles. It’s starting to sound like I’m talking about a bong, but that’s entirely appropriate because the smell of these goggles made me relax, they transported me to another place, and I was at peace.

Sadly, the goggles eventually lost their scent of newborn London. Unfortunately, one can’t take that smell and store it away in a NICU keepsakes box where the goggles now rest.

Every one of the fifteen weeks London was in the NICU, I took a load of her laundry home. And every time I was about to put her clothes in the washer I smelled them, although with clothes I had to carefully select where I was going to plunge my nose. Then I threw them into the washer. By the way, do you know how many preemie outfits you can fit in a modern washer? I’ll save you the calculation: a lot.

Smell was and still is an essential way to connect to your baby, especially if they are in an isolette. Even before we were discharged from Kate’s room at the hospital the nurses had us wearing receiving blankets in our shirts as we slept. Whenever we were next at London’s side, the nurses took the blankets from us and placed them near her head or wrapped her up in them. The blankets were supposed to familiarize London with her parents’ smell.

I liked to think of her taking a deep inhale from the receiving blanket before she fell asleep in her hot and humid isolette. And again, in the morning, taking a deep breath and catching a hint of mom or dad in the air so a part of us was always with her.

Mind the Hierarchy

/ bperica / 3 Comments

Here’s a pro tip for doctors from someone with no formal medical training:

When you are a resident, regardless of what year you are, introduce yourself as such when you are greeting parents of a 26-week preemie (or any other person in the hospital). Do not say, “Hi, I’m the neonatologist,” as if you are the attending when I can clearly read the giant block letters on your name tag that spell out, “R E S I D E N T.”

Important reasons for identifying yourself as a resident, in no particular order, are:

1. If you’re not a great doctor and you introduce yourself as the neonatologist we are going to assume, at the very least, that you are a fellow or maybe even an attending. And then we will be frightened because if you’re the fellow, then who the hell is the resident and are they next to my baby and, if so, can they please step away from her right now.

2. It’s nice of patients or parents of patients to know your resident status. We will actually give you a little slack (some of us will) because we know you are in an intense three-year period pursuing specialization in your desired field of study.

3. If you say something we disagree with or want to challenge (for example, ordering up another chest X-ray), it’s important for us to know you are the resident so we can communicate to you that we want the fellow’s opinion as well or that we want the attending in on this decision.

4. In rounds, don’t forget that you are the resident. You may be high on your horse, but remember, there are nurses in this circle that have been taking care of preemies since before you were born. There’s also a hierarchy. If a fellow is challenging your idea and nurses are backing up that fellow and the attending is sitting nearby not saying anything, that should really clue you in to the fact that the attending approves of what is happening.

5. You earn your title. Attending. Fellow. Resident. Intern. Clerk. Sub-I. So let us know exactly where in this hierarchy you reside. It’ll be best for all of us.

Daddy Kangaroo Care

/ bperica / 2 Comments

The best thing a dad can do for his baby in the NICU is kangaroo care. Mom’s got the breast milk covered, so dad needs to, again, man up, take his shirt off (or unbutton the shirt until it’s open), grab his baby, and sit in a chair for a few hours. When kangaroo care was explained to me, it was emphasized that the most beneficial kangaroo care is skin-t0-skin and that some dads are a little hesitant about taking their shirt off to do this. This was not the only time I heard of machismo getting in the way of taking care of a baby. (That is a whole other topic that I would like to address in later posts.)

After two weeks of London’s life, we were allowed to do kangaroo care with her. Of course, mom got the honors, but I worked my kangaroo care in when Kate had to hook up to the breast pump.

IMG_3068

For the next couple of weeks London was small enough to tuck into Kate’s shirt. I thought that was the cutest. The two of them were so happy together during kangaroo care. I could not stop smiling whenever I would look at them. It was such a peaceful scene that I too could fall asleep even though I had been drinking iced coffee since I got up.

IMG_3163

 

The most challenging part about kangaroo care is the management of the tubes and wires when you are moving from isolette to recliner. Once the transfer is complete, you get to enjoy the easiest part about kangaroo care, falling asleep.

IMG_3168

 

Not the sharpest picture, but look at Kate, my sweet Kate. Whatever was happening that day with London, as soon as she got on mom’s chest she was doing better and every single time Kate looked like she was having the time of her life. Beaming. So proud.

IMG_4142

 

I did not always take my shirt off when I held London, especially toward the end because we would be switching so often between reading and sleeping on my chest. This was the day of London’s discharge from the NICU. Getting ready that morning at home, I grabbed this purple t-shirt, knowing I had worn it the night London was born, and now the day London came home. I still think of that every time I reach for this shirt in my closet.

IMG_4144

 

A lot of aspiring writers ask professional writers how they do the work they do? What do you start with? And a common response is, “Butt in chair.” The time to write was not while London was in the NICU, but it was the time to do the most important job I will ever have, which still required my “butt in chair.” This was my view for 109 days, I could not leave it the day of her discharge from the NICU without taking a point-of-view picture. Looking at it now takes me right back to that pod, from where we left the hospital together for the first time.

Not Fun, Placing an NG Tube

/ bperica / Leave a comment

Before our NICU discharge, Kate and I both learned how to insert a nas0-gastric (NG) tube into London. NG tubes are necessary when the baby cannot drink enough milk to thrive. When London was discharged, she was only nippling 25% of her daily volume. The rest was pumped through the NG tube.

We needed to learn how to place it because NG tubes can be easily pulled out by the baby. During her NICU stay, London pulled her tube out several times. So, we had seen it put back in place by the nurses. A nursing student did it one day while we were there watching. I would have been extremely nervous if I had been in her shoes with the parents hovering over me, but she did extremely well, threading the tube up one of London’s nostrils and down, down, down to the stomach.

IMG_2436

At home, with that darned tube snaking out of her and all that orange tape on her face.

When it was time for Kate to practice on London they both did pretty well. When the tube first reached London’s nostril Kate stopped because she was already crying. Nurse Megan and I comforted her and told her she could do this. Kate composed herself and went for it, making it look easy, even though inserting an NG tube in your baby is really one of the worst tasks you can have as a parent of a newborn.

I tried the next day and, again, things went pretty well. Of course, by the time I was finishing up with the tube, London was bawling her eyes out, but regardless of who does this to her and how they do it, by the end, London was always screaming. I suspect most babies respond this way. Luckily, London was always easy to calm down afterward.

The success we had placing the NG tube while London was in the NICU did not follow us home. You can nearly cover your baby’s face with tape trying to hold that NG tube in place and attempting to make it impossible for the baby to get a finger around it and pull, but eventually, that thing is coming out. The first time this happened to us it was already late at night. We were so disappointed we had to do this to London. We let her calm down as we readied a new NG tube, tape, and a little sugar water to distract London from the pain. Kate tried first and I held London down on the bed. Things seemed to be going okay until the tube was a couple inches in and it wasn’t going anywhere. London was awake and bearing down so the tube had nowhere to go. It is agonizing to be in this position. We didn’t know if the tube was going somewhere it wasn’t supposed to be going. We didn’t know if we should push with more force. Meanwhile, London sounded like someone was torturing her.

We regrouped before I tried to place the tube. No luck. Same thing happened. London was bearing down and the tube wasn’t going anywhere. We abandoned that attempt. I was distraught, grabbing a pillow and screaming into it because I just couldn’t stand inflicting that much pain on London, twice, and without any reward.

After an hour of talking about our alternatives (try again in the morning or text one of London’s night nurses to see if they can place the tube if we go to the NICU) we decided it would be best to just go to the NICU. London’s nurses had offered to do this before we left. If we had any problems, let them know, come on by, and they will put in the NG tube.

We arrived at midnight and Windy had set up a little operating room in the NICU’s conference room. She placed the tube like it was no big deal and I tried to pay very close attention to how it worked so well in order to avoid doing this again.

A week or two later, London had pulled the tube again. I tried to recall the night at the NICU and I watched a couple of how-to videos on YouTube. The keys to doing this properly, at least on a baby, seemed to be sleepiness and speed. Don’t try this when your baby is wide awake because they are able to quickly bear down and stop the NG tube from going in. Don’t be slow about it either. By the time your baby figures out what is going on, you want the tube to already be in their stomach or damn near close.

I volunteered for the mission. Kate held London’s arms. Then we paused. We said a little prayer over London, attempting to calm ourselves before we do this again, praying that it would not be a repeat of last time. We finished praying. We took some deep breaths and then I plunged the tip of that NG tube into one of London’s nostrils and it curved downward and kept tunneling its way right down to London’s stomach. What a huge relief it was for all three of us to have that done. In this case though, I think Kate and I were the most relieved. No trip to the NICU tonight, baby.

We did not have to place the NG tube again. A little over a week later we pulled the NG tube ourselves because London was due for a photo shoot. That day she took all her milk by bottle. She looked and still does look amazing without that tube coming out of her nose and all that tape on her face. When I look at pictures from the NG days, I cannot get over how crowded her face looks. We are so happy to have put that phase behind us.

The Museum of London

/ bperica / 3 Comments

IMG_3038

I have a sneaky suspicion that throughout her life London will be the recipient of a few gifts with a British theme to them. If we were going to easily tire of this, we wouldn’t have named our daughter London. Those gifts started arriving right away, one of them directly from London itself. A friend of ours was in the UK when London was born and brought back a gift from the Museum of London. When I saw the bag the gift came in I knew exactly where I was going to place it…on one of the walls of London’s pod. There it stayed for 109 days. As the weeks and months passed, there were more signs on the walls in London’s pod. Of course we have them all now at home, but I took pictures of all of them before we cleaned out London’s NICU pod. Here they are…

IMG_3054

London’s first footprints with her birthweight. There’s no perspective here, but those feet are the size of my thumb. Oh, and all these signs were made by the nurses. That is something I never expected about our NICU stay, to have on-demand artists to create signs commemorating London’s growth and month birthdays and even holidays.

IMG_3055

London’s first holiday was Valentine’s Day. We brought cards in for her. I bought a card for mom from London. Just looking at the card from London made mom cry. Forget about reading it.

IMG_3210

Born on January 30th, we just had to select a day at the end of February to be London’s one-month birthday. We took handprints and footprints that day and a family picture. London’s hands that day were about the size of my thumb.

IMG_3311

 

By March 8, London was 6 lbs 1oz shy of my birthweight.

IMG_3516

IMG_3936

These footprints, although small, looked like Bigfoot had made them when you saw them side by side with London’s birth footprints. Unbelievable. Also, had London gone full term, we were told her birthweight would have been around 9 lbs 2 oz, the weight on her three-month birthday.

_BKP2734

Lastly, one more sign made just in time for London’s discharge day from the NICU. She gained 9 lbs in the NICU and grew 6 inches. By her fourth month there, London could have eaten some of her NICU neighbors for dinner. She was the Queen Bee, unrelenting in her cuteness and exponential growth chart.

Summa cum laude. 

We’re Ready

/ bperica / Leave a comment

About two weeks before London was born, I was talking with a mom of two kids and telling her about the baby girl that we planned on welcoming into the world on May 4th (or sometime around then). When I finished up sharing my exciting news, she had a question for me, “Are you ready?”

“Yeah, I’m ready,” I said.

“No. No, you’re not,” she replied.

For some reason this exchange, between the parent who is in the thick of it and the expectant parent, is commonplace. And, I would be willing to bet that expectant fathers get this response more than expectant mothers do, but I am not bothered by that. I am bothered by the response, “No. No, you’re not.”

Obviously, I recognize that this response is, in part, a weak attempt at humor. What appreciation I have for that humor though is wiped away by the response’s other message, one that seems to imply that my wife and I, one, did not know what we were doing when we decided to make a baby and, two, that prior to that decision, we did not think about what we were getting into or taking on.

Of course, no one knows for sure what they are getting into when they decide to start a family. We certainly did not know that five months to the day that we found out we were expectant parents our little girl would arrive. We did not know that London’s prematurity meant that I had to stay at home with her. We did not know of how deeply we would love our child. We could not have imagined our lives changing so much in the span of six hours on the night of January 29th.

But we did know something before London was even a whisper. We knew that if we moved forward with our desire to start a family we were embracing the unknown in a way we never had before. Within that unknown, there sure was the possibility of having a preemie. There was the possibility of a miscarriage. Really, the possibilities are endless and that is a frightening thought, especially when you become a parent.

For the chance to love someone more than ourselves; for the opportunity to have our hearts leave us and become a little human being, these are joys that trump the unknown.

For that mom who said, “No. No, you’re not,” who knows what surprises and challenges came her way in parenthood, but, she must know, and so must other parents who tell expectant parents that they are not ready, that, indeed, some of us are.

Losing Anticipation

/ bperica / Leave a comment

I touched on this topic a while back in “Life Goes On, But Something Was Lost,” but I wanted to write about it a little more.

IMG_2351

A getaway to Voodoo Doughnuts…we did bring some back to the NICU for the nurses.

When you have a baby in the NICU long-term, it takes a while to establish a routine. At first, you’re there all the time, until life elsewhere completely falls apart. By life elsewhere falling apart, I mean there will be no food in the fridge when you come home from the hospital, you’re out of toilet paper, you’ve forgot to pay bills, and you forget how to have fun, or, at the very least, you feel guilty for having fun or for merely being busy with something else other than sitting in the hospital with your baby.

The NICU nurses tell you right away that you can’t be at the hospital all the time. You’ll go mad if you do. As weird as it feels, you need to go out for dinner, go see a movie, and spend some time at home just relaxing. In our case, it was spending time at the house making it feel more like a home…we had moved in two weeks before London arrived.

At the NICU, I got the impression that some parents didn’t heed the nurses’ advice and spent every waking minute at the NICU. And when their baby was ready to come home, they were already exhausted. Eventually, we did take the nurses’ advice. Spending time away from the hospital did keep us sane, but it also allowed us to gain back some of that time we feel we had lost, the time we would have spent anticipating the arrival of our first baby. We had a lot of that time left, 14 weeks perhaps, and then it vanished the night London was born.

As a couple, spending time together away from the hospital was essential to our ability to get through the challenges that London faced. Before she was born, I had made Valentine’s Day reservations at a place downtown we had been wanting to go to for a while. When London arrived, I assumed I’d be canceling that reservation. It seemed like everything was off the table for weeks. Thankfully, I was wrong.

IMG_2368

My sister and I, post-brunch and many mimosas, getting ice cream at Little Man.

We could have gone 109 days without a night out, a Sunday brunch at Cafe Bar, a trip to Little Man Ice Cream. Kate could have gone without a baby shower…or three (with pictures of actual baby present). I could have gone without a couple trips to the Bull and Bush (“The pub you’ve been practicing for.” God bless them). We could have passed on going to church Easter morning. But if we had not done all these things, we would have completely lost those 14 weeks to the NICU.

The NICU is a beast. You don’t want to give her more time than you already have to. Of course, don’t take this too far. One nurse told us about a couple who had been told that their baby was going to be discharged on Friday of that week and they objected because they were going to Vegas that weekend. There’s a sweet spot you can find. I think we eventually found it. Our hearts never left the NICU, but our minds and bodies knew they had to leave that place every once in while to keep going.

28 Weeks, Not Too Early to Start Reading

/ bperica / 7 Comments
IMG_3345

Reading In the Night Kitchen, one of my favorites.

Posted near the hand-washing station at the NICU entrance is a sign promoting the NICU library. By the looks of it, they have all the classics: Goodnight Moon, The Very Hungry Caterpillar, and Guess How Much I Love You. However, even though I looked forward to reading to my kids, I was a bit skeptical about reading to a baby who weighs four pounds and is on bubble CPAP. How could I even concentrate enough on a kid’s book? How could she hear me over the noises of the NICU?

The skepticism did not last long. After so many hours next to the isolette I had to do something to keep my sanity. Kate and I started reading to London while she was still vented, pre-30 weeks gestational age. Too early? Yeah, but we sensed a theme with London, she wants to do everything early. Why not oblige her? Plus, reading is a love of mine and I want it to be for my daughter too.

We started with a book of Disney short stories. I introduced In the Night Kitchen, An Awesome Book (by Dallas Clayton, one of my favorites), and On the Night You Were Born. London not only was calm while I read to her, she satted high too. Her eyes would wander around, trying to find my voice. I was hooked.

But what do you do when you’ve read every kids book you own several times already? Easy, you start over if your kid is old enough to make requests. But London couldn’t so I moved on to magazines and novels. The New Yorker…why not? I started reading from The New Yorker app on my phone, but then began bringing the magazines into the NICU. The subject of the piece did not matter to London. As long as she heard my voice and could watch my mouth move and see my face we were making progress. I read about the origins of house music in Berlin clubs, Amazon’s effect on the publishing industry, and the start of Under Armour. Sometimes I had to whisper the words to her because they weren’t exactly NICU-appropriate.

IMG_3815

Introducing London to Middle Earth in the NICU. The Hobbit. Read April 21-May 7.

Done with the magazines, a novel was next. Having seen the second of The Hobbit movies just a week before London arrived, and not having read the book since my freshman year of college, I had a strong desire to read the book again. I read this one from my iPad. I would shut the curtain to London’s pod for a little privacy, pick her up from the isolette, sit down in the recliner, rest her on one half of the pillow and the iPad on the other, and start reading. We finished The Hobbit in two weeks, every word of it read out loud to London as she drifted in and out of sleep on the pillow in front of me. We finished on May 7. By May 12, I had selected the next book, Harry Potter and the Sorcerer’s Stone, which meant I was committing London to a lot of listening and, for me, a lot of reading, because you can’t just read one book in a series. Well, you can, when the series sucks, but I didn’t expect that to be the case with Harry Potter. I had never read more than ten pages of a Harry Potter book. Now we are 250 pages into the third book.

I guess all the previous paragraphs represent my attempt at telling you it is never too early to read to your kid. It is hugely beneficial. Even before London was “full-term” she knew my reading voice from my regular voice. Realizing this could not have encouraged me more. She even smiled in response to the sound and rhythm of the words when she knew I was reading to her. She still does. Sometimes she flails around on the floor in pure excitement at the sound of the words and the sight of the book. And at other times she rests in the mamaRoo, so intensely focused on the movement of my mouth that I can see the learning in her eyes. And when she falls asleep I stop at the end of the page so, together, we won’t miss a word.

Be A Man, Change A Diaper

/ bperica / 2 Comments

The first time I was present for London’s cares in the NICU, I made what was, for me, a radical decision. Instead of standing off to the side and becoming a spectator to my daughter’s care, I joined in and did as much as possible. So often I choose to spectate, deliberately choosing to not try something new and scary. However, when faced with the prospect of handling my two-pound daughter, I didn’t even think twice. I said I would go for it even though I could hardly believe the words that were coming out of my mouth.

All I had to do was take her temperature and change her diaper. That very first time, it was really difficult to do either of those tasks. I needed some coaching but got through it. London’s nurses that morning, Megan and Laura, were excellent teachers and perfectly understood that I was in a fragile state myself. Afterward, I certainly didn’t feel like a pro or anything, but I had this minuscule sense of accomplishment. In hindsight, choosing on the morning of London’s birth to jump right in and help with her care as much as I possibly could set the tone for the rest of our family’s time in the NICU.

_BKP2260

Reaching into London’s little world.

I don’t know if what I had was a very positive outlook in the NICU, but at least from that first morning on I had a tactile connection to my daughter that made things a little more bearable. I know it all started with that first diaper change. So how else could I feel when I saw a father being interviewed about his kids in the NICU and when asked if he was changing diapers he balked, giving the reporter a look that said are you crazy? The father responded: no. The reporter: why not? The reason he gave, with a chuckle: they’re too small.

I felt shock because the babies he was talking about were small, but not as small as London and preemies do come even smaller than London. I was also a little sad. I wanted to reach through the television and tell him my story, why I thought choosing right away to change a diaper on your preemie was such a good idea.

Until I saw this interview on television, maybe I didn’t realize how important my decision to change London’s diaper that first morning of her life was. I learned from my choice that I could become an active participant in this, the scariest thing I have ever gone through. It meant that I actually did get to touch my daughter and not just stare at her through thick plastic all day long. And for her, I don’t think I will ever know all the ways it helped her. I know that it helped her become familiar with my voice and touch. There were a lot of nurses taking care of London, but at least once a day the same person was taking her temperature, changing her diaper, and talking to her in his same, goofy voice.

These preemies need love and attention. As a father, you have to give that too them any way you can. It may seem like nothing at first, but if you keep loving them and helping with their care at every opportunity, they are going to get better. I remember toward the end of London’s NICU stay, the director of the entire NICU floor came over to London’s pod. He walked up to her bed and smiled at her, shaking his head in amazement. He had been an attending the week London was born so he had seen just how far she had come. “She’s made so much progress. She’s looking great!” I nodded in agreement and told him, “She’s amazing. Thank you!” He paused for a moment, “We do all that we can here, but it’s you guys that have really made the difference because you provide the love that she needs and we can’t bottle that stuff up.” We both looked down and smiled at London. He tapped the isolette, as if saying goodbye, and walked off. That love he mentioned, it took so many forms during London’s 109 days in the NICU, but maybe none more important than shedding fear and apprehension and stepping up to change that first diaper.

The NICU’s Empty Rooms

/ bperica / 1 Comment

Not all NICU stories have happy endings. We did not know the parents in the pod opposite London’s pod. They were very young, teenagers probably. Their baby seemed to arrive in the NICU around the same time London did. For nearly two weeks we were neighbors, who at most acknowledged each other’s presence, but did not speak to each other. We were just getting into the groove of having a baby in the NICU and I was not in the mood to chat it up with strangers. In addition to that, I did not identify with this couple. It seemed like the only thing we had in common was that we both had a baby in the NICU.

As London entered her second week of life, Kate and I noticed that anyone entering the pod across the hall had to gown up. One afternoon some doctors were working on this baby. Some sort of operation. Looked serious. One can only guess what was wrong, but it did not seem like a standard procedure.

Two days later, as we joined London for the day, I took notice of the parents. They looked especially worn out as they spoke with a doctor. We overheard a bit and they were being encouraged to call their parents. I should have taken that as a sign that things were not going to end well for them, but I remained optimistic. Maybe things have just gotten a little more serious, but the baby is still doing okay. Those hopes eroded a few hours later as I returned from a coffee run and heard a fellow speaking to other staff members. A chaplain had been called and most of the family was already here.

I entered our pod and told Kate what I heard. A little time passed and then I stepped outside our pod and stood at the sink in the hallway. Kate stayed inside holding London. As I washed breast pump parts I could hear the mom and dad across the hall starting to say goodbye to their baby. My back was turned to anyone else in the hall, so I did not hold my tears in. I wept for the parents out of sadness. I wept out of fear. I wanted to finish up cleaning as quick as possible so I could go back in our pod and sit a little closer to my baby girl.

Less than an hour later the baby across the hall was moved to a private room, where the family could spend the last hours of the baby’s life in privacy. This practice seems to be as much a benefit of the family with the sick baby as it is for the other NICU families.

Another hour later, I was getting water down the hall from the NICU front desk when I saw someone walk by with a professional camera. I recognized some of the people with the photographer as family of the sick baby. I don’t know for sure if the baby was still alive at that point, but there was still time for one last family portrait.

By the time we left and walked out of London’s room, the pod across the hall had been emptied of medical equipment, mopped, and sterilized. The equipment had been cleaned and put back in the room, but draped in plastic, protected and ready for use when the next little patient arrived. The room looked inviting with its giant windows and rocking chair, like it had already forgotten the family who was in there hours earlier. I remember thinking, the secrets these rooms keep are sometimes for the best.

Leaving Her Doesn’t Get Easier

/ bperica / Leave a comment

*Originally written on April 22, 2014.

You don’t grow used to visiting her at the hospital. Some might think that happens because she’s been there for nearly 3 months, but not true. Everyday we see her grow. We track her progress. We see her struggles. And eventually you start to see her supreme strength and a little personality emerge. We love her more every single day we see her. She becomes our daughter more and more every day.

IMG_3809

Holding London on April 22, 2014, right before saying goodbye for the day.

You realize there are hours in every day that she might be alert and you won’t be there. Sometimes you have to leave right when she is super alert and scanning the NICU air space for a familiar outline or voice, but you have to go because you have to eat, you have to sleep, and all that is at home, not at her NICU pod. So, yes, at some point you have to pry yourself away from her isolette, watching her as every step you take, takes you closer to that corner where you will lose sight of her until you’re back the next day. You can see that her eyes are trying to track your fading image. Her forehead wrinkles as she does. But sometimes you still have to walk away. No, it doesn’t get any easier leaving her at the hospital. It gets harder.

Every time you round that corner and she disappears, you instantly start thinking about seeing her the next day. How will she have changed between one visit and the next? How long will she be awake while you are gone? Every day you have to round that corner and leave your heart there in her NICU pod. The only time of day you feel complete is when you are by her side. Her NICU pod is the site of happy reunions every morning and angst-filled goodbyes every night.

Some thoughts keep you going. One day, you will get to carry her out of the NICU with you. She will get her first breath of fresh air. She will squint from the sun’s glare for the first time. She’ll see the crisp, blue sky, watching as clouds drift overhead. She’ll hear birds chirping and singing. Maybe it’ll be raining. You will have the honor of introducing all of that and more to a little human being who will have spent her first 100 days of life inside a hospital. You will then have the terror of driving her home, but with the reward of carrying her into that home, where you’ve dreamed about her every night since she was born, where you’ve been toiling in her room to get it just right, where, finally, you will feel complete.