Waking Into a Nightmare

When the doctor ordered a head ultrasound on you to finally put to rest any doubts we had about your head size I was comfortable with the call. Why not just check? I felt confident that nothing was going to come of it. However, as the day of the ultrasound approached I had this horrible feeling. I probably only have my imagination to blame. I guess I got hung up on a worst-case scenario and dwelt on it too long.

You did wonderfully during your head ultrasound. Your arms were flailing a bit and we had to hold them down, but you did not mind the cool gel in your hair or the foreign environment. We were there for less than an hour and went home awaiting results. We did not expect to get results that night while we were finishing dinner. Mom answered her phone and I did not think anything of the conversation until she pulled the phone away from her ear for a second to tell me it was your doctor calling. I knew a 7pm call from the doctor the day of your head ultrasound meant only one thing, he saw something he did not like. I sat at the dinner table and stewed, bracing myself for the next punch to the gut. What am I about to hear? I looked at you on the living room floor, trying to get mom’s attention while she spoke to your doctor, wonderfully out of touch with the news being delivered to us.

Mom told me that the doctor was concerned about the size of your ventricles. Out of caution, he recommended a consult with a neurosurgeon, which would most likely be preceded by an MRI. Mom explained all this news about you very well, even trying to calm me as the doctor tried to calm her, explaining that large ventricles may not mean anything right now. The consult and MRI are out of caution so we can really see if something is not going as planned in that big head of yours.

As Mom called her parents and delivered the news, I had to lie down on the floor with you. I clutched you as you crawled over me, not even taking my hand away to wipe the occasional tear from my face, letting them slide down my cheek and drip onto the carpet. I wanted to cuddle with you. You wanted to play. I had to call my parents too so Mom took you upstairs and you fell asleep on her.

Going to bed that night I was wishing I would wake up and remember that this was all part of a bad dream. I guess that is the great thing about having a bad dream. You wake up and there is an instant when you think the dream was real, but then you really come to and you remember with delight that none of that bad stuff you dreamt about happened. But the next morning it was the opposite. I came out of a great night of sleep and then as soon as I remembered the new reality I wanted to go back to sleep. I wanted to forget again. It was so good, that peace I had during sleep, and now it had slipped away and I did not want to face the day without it.

To be continued…

2 lbs, 8.5 oz

I decided to post another original entry from our NICU journal. This is unedited from one year ago today.

Day 13 – February 12, 2014 – Wednesday

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February 12, 2014, one day after we got to hold London for the first time.

London had her PICC line pulled today. As well as her IV. So she is a lot freer today.

Tomorrow is London’s 2nd head ultrasound.

Today was a tough day, though not for you, London, but for your parents because the baby across the hallway from us was dying. This baby arrived around the same time you did, but we had noticed its condition was declining. When we saw both of the teenage parents sobbing today and calling in relatives we knew it was bad.

I had gone to return a pump and overheard docs saying that the chaplain had arrived. As I later stood at the sink washing breast pump parts, not more than 8 feet from where the baby was dying surrounded by family, I couldn’t help but cry. I don’t know this baby. I don’t know its parents, but I know what they went through to make it to this point and to face the truth that not all babies make it out of here was gut-wrenching.

The baby and the family were moved to a private room for the baby’s final hours of life. Now their pod is empty, lifeless, and being mopped by a janitor who hasn’t a clue what happened in that space just an hour earlier.

There is an amazing disconnect between some hospital employees and the patients and stories contained within the rooms of that hospital. I will never quite get used to it.

Today, London, you weighed 2 lbs, 8.5 ounces and it dawned on me that I weigh 100 times as much as you do.

One Year Ago Today

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Mom’s hands comfort London on February 4, 2014.

One of the most important things Kate and I did in the frantic, scary days following London’s birth was to write down what we did, even if it was watching some television to unplug for a minute. I am so thankful we have a journal from that time and from most of London’s NICU stay. Today I want to share with you what I wrote on February 5, 2014, London’s sixth day of life.

Wednesday.

Nana and Papa (my parents) told us that we could do whatever we wanted to this day and they would take care of dinner and grocery shopping and whatever else. We, of course, chose to sit next to you for the day. So we did. It was exhausting, the most tiring thing I’ve ever done, to sit next to you and constantly worry, watch the monitor, and pay attention to each and every beep.

You had a decent day. You had one more dose of drugs this night at 7, hoping to close that PDA of yours.

We had leftovers for dinner tonight. Nana and Papa came to the hospital to pray with us and to see you. They knew we were exhausted from being with you.

We watched Downton Abbey tonight, but Kate fell asleep. She is so exhausted from producing all that milk for you. I finished the episode with Nana and Papa and went to bed for the night. They stayed up though and watched another episode of Breaking Bad.

It’s silly what I wound up writing down some days, but even the mention of watching Downton helps me visualize that evening and what came before and what followed.

Maybe by chance you just found this blog and you have a baby in the NICU. If you haven’t already started a journal, I highly recommend getting one and starting today. It’s never too late. A lot of people might say, and you might think this yourself, that I will never forget such days as those immediately following the birth of my preemie. There is some truth to that, but there is only so much room in our heads and some bits of information slip away, unless you are one of those people who can remember every single day of their lives, every meal, every drive to work, etc. Chances are that this is not the case, so go get yourself a journal.

On London’s 1st Birthday

London.

I am only human, so sometimes, when you are testing my patience, I may temporarily forget that taking care of you as a stay-at-home dad has been the most rewarding and exhilarating experience of my life.

These are the days that I will treasure for the rest of my time here. I cannot contain my excitement at the thought of you getting_BKP4139 older, taking your first steps, watching your personality blossom, and getting to try so many new things. But, there is something to be said about this time, right now. It’s a time when you need everything from me or mom. You are utterly dependent on us. You are also so content in our arms.

I believe your start to life somehow molded you into the tough and incredibly happy baby you are. I believe it means you will be a success in anything you put your mind to. You have a whole life ahead of you. I wish I could see it all, every minute. I wish I could always be by your side.

The reality is that I won’t be able to always be there. There will come a day when I will have to leave you. And I know one of the fondest memories I will have that day is to think back on the days I am living right now. The simplicity of them. The pure joy you exude. The joy you give me. The energy I draw from your wonder and curiosity in life.

The other day after finishing your bottle you were relaxing on me and sort of watching TV. Looking down at you, I had this image of you watching TV as an elderly woman. Weird, I know. I was picturing you toward the end of your life here on Earth and I got incredibly sad knowing that by then our days together in this world would have passed many years ago. It was such a sobering thought, which crystallized for me just how incredibly blessed I am to be with you as many days as I am.

In a year you have given me an abundance of moments that I have bottled up and plan on taking with me wherever I go. My love for you is at the brim. Good thing we have many, many more days together so I can make even more room in my soul to fill up with love because I don’t plan on losing one drop of the good stuff.

Love, Dad.

Did it go by fast?

Did it go by fast?

That’s what everyone asks when we tell them London is turning one this week.

Like all new parents we have been very busy this last year. That’s what happens when you have kids. Life speeds up as you nurture another life. Everything takes longer from getting out the door to eating a meal to loading a car full of stuff for just six hours away from the house.

Time goes by quickly when everything takes longer. Maybe that is why everyone seems to have that feeling that the first year flies by.

But the answer is no. This year did not go by fast.

We just visited the NICU on Tuesday. We saw a few nurses who took care of London. The front desk staff recognized us as we were walking up the hallway toward them. “You guys look familiar,” one of them said, motioning at my height. IMG_2912

Standing there while London smiled and giggled at everyone who stopped to say hi, I had this overwhelming feeling of gratefulness. To think of London’s days in the NICU I feel like I need to look much further back in time than one year. Sometimes it feels like two years ago. Sometimes it feels like it never happened because that time was so different than what our day-to-day routine is like now.

Walking those familiar hospital hallways, making that familiar request to get through to the NICU, seeing the nurses, and hearing the distant beeps and alarms from the monitors in the NICU pods reminded me of how routine the NICU became. I forget it, but this place was our home for 109 days. Our house was just where we slept, but our lives unfolded in this little corner of the hospital.

I don’t know if you have ever had to visit your baby in the NICU. If you haven’t, let me tell you those days don’t pass quickly by. Since we almost spent a third of London’s first year in the NICU, a third of that year dragged on with countless questions, tests, consultations, laughs, smiles, and tears.

When I woke up this morning I glanced at my iPhone like I always do. The little white icon for the calendar app displayed “29.” I froze and stared at the number. London was not born until the 30th, but the 29th, January 29th, is when her early arrival started. To me, January 29, 2014 was the beginning of a miracle, so it holds a very special place in my heart, second only to January 30, 2014.

One year ago tonight we exited the elevator on the 4th floor. Our hearts remained there until May 19th. The time in between felt more like a year, which also feels like it took place years ago.

No, it did not go by fast.

January 28, 2014

As London’s one-year birthday approaches, January 30th and the days preceding it are becoming clearer and clearer in my mind than at any point since.

Today, I am thinking of January 28, 2014.

I was in a bad state of mind that day, one day before Kate went into labor three months early. I had graduated with my master’s degree in International Studies six months earlier. I had spent summer, fall, and winter looking for meaningful employment in Denver and had found nothing.

On January 28th, I was at a coffee shop continuing my job search, but I was easily distracted and frustrated with so many things in my life. I was a few days shy of turning 31. I started to write my stream of consciousness down.

A wasted mind.

A wasted education.

Greatest accomplishment this year will be fatherhood.

Exciting that is, but I want something else.

Maybe staying home with the baby is the best.

But I’ll never know unless I get a job and can live the other side of things.

Since London was born, I have come back and read these lines a few times, but in a different mindset than when I put them down on paper. I no longer feel like my mind has been wasted. Of course, when I was in the middle of a fruitless job search it was easy to feel that way. It was easy to question my decision to go to grad school in a completely different field (IR) than my undergraduate studies (English). It was easy to get really depressed about having debt for the first time in my life, and all because of this damn master’s degree that I am not doing anything with.

A year later, the bit about the debt still angers me.

“Greatest accomplishment this year will be fatherhood.” On January 28th, I did not know a thing about what fatherhood would mean to me, thus thinking it would only be the greatest accomplishment that year. A day after writing this I was in fatherhood with no idea if my new duties would last a week, but I already knew that what I was doing during those days, what I was going to do in the days to come, would be the greatest accomplishment of not just the year, but of my lifetime.

In a way, I still want something else. I love my job. I am very happy with it. I know it will eventually change and I will be free to live the other side of things, but no matter what that other side is like, I will never get the sense of importance from it as I get from my current job. I did not know that on January 28th, but knowing it since has made all the difference during the seven months I have been a full-time SAHD.

The Typical SAHD Day

I found that writing about my daily routine was very therapeutic and it is also great to have this down somewhere. It certainly will not prove to be the most exciting post of mine to read, but nonetheless, I share it because I never know who might find this helpful, touching, entertaining, etc.

6-7 am – Wake up. Kate will typically give London her first bottle of the day and graciously lets me snooze a little longer. Kate starts to get ready for work leaving London in my arms to cuddle a bit or to finish her bottle.

7-9 am – I set London down in the living room so I can get some breakfast. London is army-crawling or land-swimming now. Her curiosity drives her will to move to any corner of the room. She gets there fast and I usually have to break from my breakfast a few times to pick her up and set her back near her toys. Back to square one. I will also work out during this time. I take London to our unfinished basement. I bring her saucer down and some other toys. She is very content while I am working out. However, it is all about timing. If she is hungry, this is not going to go very well. I make sure she is full before we go downstairs. I typically do a workout from one of three workout programs I have completed in the past: P90X, Insanity, or T25.

9-10:30 am – Back upstairs in the kitchen. If London didn’t have her breakfast before my workout, then it’s time for that. Right now, she loves multigrain cereal and mashed up banana. We just tried yogurt for the first time yesterday and she downed a full serving size. It took me a couple weeks of London occasionally vomiting after meals to realize she needs to spend a little more time upright following a bottle or cereal. This also means I can’t hold her upright in my arms and give her a little bounce. I was doing this last week while watching some TV and I heard a loud splat and felt warm slime on my foot. I looked down and my right foot, directly under London’s mouth five and a half feet above it, was covered in vomit. So, upright she shall stay during this time until I feel we are in the clear. Sitting on the floor with her is how this time usually passes. She’s quite good at sitting as long as there are some toys within reach. I usually have an episode of The Wire on in the background. This show aired on HBO and is a cop drama based in Baltimore. Excellent writing, but dark, gritty, and very realistic.

10:30-12 pm – London’s first nap of the day is around this time, give or take thirty minutes. She typically sleeps for a little over an hour. I take her upstairs to her crib, put her in a new diaper if she’s been wearing the same one for a while. She naps much better in a fresh diaper than a slightly wet t0 wet diaper. That’s probably the case for most babies. Sleeping in a wet bed doesn’t sound fun. I stay in the room until London is asleep. This gives me some time to read aloud Harry Potter to her. We are somewhere around page 500 of the 5th book, Harry Potter and the Order of the Phoenix. I do not read a page in silence or away from her side, so it is taking me a while to get through the 870 pages of this book, but since I read some to her every time I put her down for a nap I am able to whittle away a decent chunk of the book each week.

Once she is asleep I will hit up some house duties. Go downstairs and clean up the kitchen. Do some laundry maybe. Pay some bills perhaps. You know, all the menial but important stuff that goes in the background of every functioning household. I will also shower so London and I don’t have to smell me the rest of the day following that workout downstairs.

If there’s some time left, I will partake in one of my favorite rituals of the day and brew some iced coffee. I’ve recently started to make Japanese iced coffee with my Chemex. This is a superb method and, after trying a variety of methods, the best one I have found.

12-1 pm – London wakes up. I give her a bottle. She will play in her activity saucer afterward while I scrounge up lunch of leftovers or graze through the pantry for something resembling a decent meal. Maybe I’ll watch a little more of The Wire. These episodes are an hour long and I never watch them in one sitting. They are usually broken up in four or five parts scattered here and there throughout the day.

1-3 pm – If we have errands to run, this is when I get them done. I like doing them while London is awake so her nap time can be at home and I will also have more time to myself if she sleeps at home. Whether it’s the grocery store or flying through Costco, London is so good when I am out with her. Today we went to the library to pick up a book and a movie I had on hold there. She seemed to know it was a quiet building, keeping her singing voice at bay for a few minutes. Once home, more floor time with London. This is usually the time of day when I read her “age appropriate” books. We usually lay side by side on our backs, with me holding the book above us, her arms outstretched for the book, wishing to touch the thick pages and pull them to her mouth. She looks from the page to my mouth, so intently studying the movement of my lips and the sound coming out of my mouth.

3-6 pm – London’s second nap will happen sometime in this three-hour block. After finishing up this dose of Harry Potter, I usually have a little cleaning up in the kitchen, but then I have some real free time. I always face a choice during this time. There are two things I love to do during this time and not enough time for both of them. Will I read? Will I sit down and write a blog like I am doing now? If I don’t have a blog idea, I do not force it. So, with any luck, London sleeps long enough for me to read an old issue of The New Yorker or a few chapters of a book. Come 5:30, I will usually watch the nightly news and I will have to be snacking on something by then. London wakes up and Kate gets home next, or vice versa.

If there’s dinner prep to be done, I do it during this time, sometimes making all of dinner so that when Kate gets in the door we can all sit down and eat while Kate feeds London her dinner in the high chair pulled up next to our dining room table.

6-9pm – The use of this time varies. We might have a rented movie we want to watch. London might need a bath. We clean up after dinner. We tell one another about the day. I usually lean on Kate a little bit during this time, shedding some of the parental duties and enjoying the split of them between us. Come 8:30, we are thinking about heading upstairs for the night. I get London a bottle, her last of the day, and make another one for the morning. I bring her morning bottle upstairs in a little cooler bag to keep it fresh for the morning. London loves cold bottles!

9-10:30 – I typically give London her last bottle. London gets a goodnight kiss from Kate and I put London in her crib. I usually do not read to her at this time, slipping out of the room as soon as she is in her crib so she doesn’t get accustomed to me being there. If she does, then she will cry as soon as I step toward the door and make any sign of leaving. But, if I step out right after she gets in her crib and is holding her hands together and looking at them, then she won’t even notice me leaving. Of course, before all this I lean in and kiss her on her forehead, still to this day having a brief thought of her incredible progress and the adventure she has taken us on. An adventure unlike any other.

Once London is asleep, I will check on her once more, usually moving her into the center of her crib. Then it’s to bed for me. Reading with a headlamp or watching some late news.

36 Weeker ≠ 26 Weeker

One does not want to brag about how long their baby was in the NICU, although many do (see this earlier post on NICU bragging).

However, not all who mention how long their baby was in the NICU for are bragging about the experience. I would say a decent number of parents are simply stating that information up front as a desperate attempt to find someone else out there who has gone through exactly what they have gone through. I can relate to their desire because parents who have had a 26-weeker are not going to have much in common with parents of a 36-weeker.

What Kate and I know about prematurity is based on our own experience of having a 26-weeker. So, if you can, imagine our reaction when we read something like this, “My baby was born at 36 weeks. It was so horrible. We had to stay in the NICU for two weeks.” Parents of a 26-weeker are just going to laugh at that. In a similar fashion, so different our experience could be from a 24-weeker that parents of such a preemie might rightly scoff at our daughter’s 109 days in the NICU. I would not hold that against them because 24-weekers are at a higher risk of having longterm side effects from their prematurity than 26-weekers.

The earlier your child is born, the more you will hear stories from parents of preemies that will sound “easy” or “absurd.” The more they are going to sound like the person is NICU bragging, when, in fact, they might not be at all. Perhaps they just want to share their story. 32-weekers are fairly rare, right? Yes.

As you might be able to tell from reading the earlier post about NICU bragging, my views on this phenomenon have slightly evolved. For parents of preemies, a good rule of thumb is this:

Next time you are talking to someone who has also had a preemie, do not assume that their child’s time in the NICU was harder, easier, shorter, or longer than your child’s stay there. There are ways to find parents who have gone through the same experience as you have, but starting off with woe is me, is likely going to isolate you rather than find you the support you desire.

Pictures: Leaving the NICU

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The day of London’s discharge from the NICU I brought the Nikon to take some higher res photos of her room and its surroundings. Although we never wanted a baby in the NICU, it did become a home for us after three and a half months. I suppose anywhere your baby has to stay will inevitably feel like a second home. I wanted to capture even the mundane things of the room, like the chairs we sat in everyday, or the closet doors displaying her footprints and growth progress. So, some of these shots will just not have much appeal to you, but I thought I would share them anyway because they mean so much to our little family.

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London resting in her NICU bed. For her, the day was not so monumental as it was for us. She had no idea what was in store. We did, and we could hardly contain our excitement and nervousness.

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This is one of those pictures that is more for our benefit than for yours. I wanted to capture what I saw from this side of the bed, where I actually rarely stood. I stood on the other side all the time. But at least from this angle you get a feel for what was in the rest of the room and the amazing windows we had in the room.

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The closet in London’s room with several footprints, a growth chart, a physical therapy schedule, a note from Kate, and the top of a bag holding London’s dirty clothes. Again, just trying to capture it like it was before all this stuff came home with us.

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The million-dollar view. It doesn’t look like it, but it’s the only window this size in any of the NICU’s pods. We scored in a major way.

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I took all the stickers we had placed on things around the room and put them on the iPad. The outcast Leprechaun was a treat from our Irish primary nurse. When he was on the lamp for months, I had placed a Union Jack flag in his hand. Eileen was not amused.

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Dear Megan, London’s primary, on the last day she was responsible for taking care of London.

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Spent a lot of days in both of those chairs, usually with coffee on the side table and always with my Timbuk2 bag filled with magazines or books to read when, or if, I could get some time to do so.

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Megan and Kate going over some paperwork before we finish packing the room up and carry London out of there once and for all. There’s no way to explain just how nervous you feel about taking your daughter home from the hospital after she has been there for almost four months. You absolutely need to get everything right and you also need to know again and again what exactly needs to be done if there is a problem with something once you are home. In less than an hour there is not going to be a team of nurses and doctors on the other side of the curtain able to answer your every question.

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Moments after all three of us stepped outside the hospital, 109 days after we frantically arrived, thinking we’d spend just a few hours there.

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Home. The adventure begins anew.

The NICU’s Empty Rooms

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

*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.

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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.

 

What Not To Read

Once London arrived, I was intent on researching preemies because I did not know a thing about them. The very kind nurses gave me a book on day two or three, cannot remember exactly, but I took it with interest. It was The Preemie Primer, written by an MD who gave birth to preemie triplets. Interested in what I would find out about our situation, I opened to the prologue and started reading, right there in the NICU. But how could any brand new parent of a preemie get past this passage detailing the very premature birth of one of the author’s triplets:

And then the worst words that I have ever heard, “Do you want to hold your son? He is dying.”

That is the first sentence of a paragraph. I did not make it to the second, at least not right then. I started to cry and quickly shut the book and put it aside, not touching it for weeks to come. Now, half a year later, I think I can enjoy what this book has to offer. However, I would not recommend it to brand new parents of preemies. At the very least, I would skip the prologue altogether. The thing about a book like this and others (like What to Expect When You’re Expecting) that aim to guide you through a critical time in your life, is that they do present all the worst case scenarios. There are good intentions, I am sure, but reading through them all is like getting on WebMD and self-diagnosing every time you come down with a weird rash or a string of very serious headaches. In other words, reading them can do more harm than good.

That said, Preemie Primer seems to be enjoyed by many readers, so I do intend to read relevant passages in the coming days, weeks, and months. Just don’t crack it open when there is even a chance of hearing those same words (quoted above) spoken to you.

Handle With Care

Yesterday I wrote about holding London for the first time. Today I thought it appropriate to share a video of picking London up directly from her isolette. The video shows me doing this for the first time. The day of the first hold, I was seated in the chair already when the nurses placed London on my chest. Although that was complicated, it is a far more perilous task to pick London up out of the isolette and then move backwards with her to the chair and sit down. The most worrisome aspect of all this is the kink that can form in the oxygen tube when we move London. If that tube is not supported properly once she is on our chests it can once again kink.

When London was vented, it took about five or six minutes to move her and get her situated on us so that both London and parent were comfortable. I trimmed this video to just the first two minutes. At the beginning, you’ll be able to hear a lot of chatter about my height. This happened a lot in the NICU, but as our time there continued all the staff grew accustomed to my height, at least to the extent that they didn’t feel the need to tell me I was tall. If the video appears as huge on your screen as it does on mine, so big that you cannot see the whole video on your screen, press play (middle of frame), and then just click the full screen icon in the lower right corner of the video and you’ll be golden.

The First Hold

Due to London’s umbilical artery catheter (UAC) line and her general fragility, we could not hold her until she was a bit stronger so the UAC line could come out. They pulled that line on February 10, a Monday, and we were told that the next day we would most likely get to hold our daughter for the first time. Just the thought of that was tear-jerking and, I admit, a little intimidating.

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A new and improved family portrait.

The next day everything went as planned. So it was on DOL 12, that we got to hold her for the first time. I wrote in our journal:

I teared up as I saw you placed on your mom’s chest. You are so fragile and small. So helpless. We are absolutely in love with everything about you. After mom held you for a couple hours, I got to hold you. Kate took an amazing photo with one of our phones. It’s the best photo of us together so far…We reached a new level of love and connection to you today and it was all because of getting to hold you and be with you as we were meant to be with you at your birth.

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The picture Kate took. My favorite.

That photo Kate took is still one of my favorites. It will be for the rest of my life. It is such an explicit reminder of London’s beginning. That day I barely had to provide support with one hand to hold London up on my chest. She is wearing the smallest diaper available at the NICU. We have a couple of those diapers (clean ones) in our keepsakes bag from the NICU. When we show them off, most women compare the size of the diaper to a maxi pad. Folded up, the diaper is about the size of a kleenex, albeit slightly thicker.

The first picture of all three of us with London out of her isolette was sent out to everybody that night we got home. From February 11th on, there was not a day in the NICU for London when she was not held by one of us. Another of my favorite pictures is below.

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When Kate held London for the first time was when Kate transcended all previous definitions of beauty I held. It’s a moment that will be with me for the rest of my days.

About A Preemie

In March, as I painted London’s room, I queued up a Radiolab podcast. This specific story I had been told about by a good friend, as well as Kate. It is about another couple who had a preemie, but one that was born on the edge of viability, at 23 weeks and 6 days, so early that the parents had to make the decision about whether or not they wanted the doctors to save their child.

I was hooked as soon as I pressed play. Although this preemie had quite a few different complications than London, our story and their story is amazingly similar. Many of the feelings the parents expressed I had felt too or Kate had felt. When the father was talking about feeling the squeeze of his daughter’s hand for the first time, I stopped working, laid down on the floor, and listened so intently that I forgot to blink. I was reliving the very first time I got to touch London. It was impossible not to cry.

If you want to better understand our lives during London’s time in the NICU or the lives of someone else who had a preemie or was a preemie, I cannot think of a more articulate, informative, and thoughtful presentation of the experience. Please, listen. The link is below. The podcast streams from the top of the Radiolab page. Have a great weekend!

Listen here.

Welcome to the Pumphouse

Never in my wildest dreams did I think I was going to spend so much time with lactation nurses. We discussed the intricacies of hand expressing (whilst using hand motions), breast milk volumes, engorgement, and just how much breast milk one could fit in a chest freezer. I had no clue that my wife’s breast milk would still come in even though London was born at 26 weeks. I did not know there was such a job as a lactation nurse. But, like so many other things about London’s birth and care, I learned soon enough.

Breast milk, I was told, quite often comes in as soon as the placenta detaches from the uterine wall, no matter the gestational age. And, I soon found out, there is not just one lactation nurse in the NICU, there is a whole damn team, and I spoke at great length about breast milk and breasts with each one of them.

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From the early days, when I thought this was a lot of breast milk.

The day of London’s birth, a lactation nurse stopped by Kate’s room to ask if she was going to pump breast milk. I had not even thought about that. The trauma of the last 16 hours was still settling in and thinking about and planning for the future had not yet crossed my mind. I think Kate was sort of at this point too, but we both were satisfied to know that there was a good chance Kate’s milk would come in. Let us begin then. Lactation brought in a breast pump that looked like a medieval torture device. They were calling it the “Symphony.” They hooked Kate up and the Symphony ran for 18 minutes and at the end you could just barely make out two milliliters of colostrum. A few hours later Kate produced 2.6mls and then later that night 3.8mls. The next day, January 31, was Kate’s first 24 hours of pumping. She produced 32.6mls that day, or 1.1 ounce. Lactation handed us a log, in which we kept track of when Kate pumped, for how long she pumped, and total volume.

A few days later, once we were home, lactation gave us a DVD to watch. Apparently, the DVD would help Kate get more milk by hand expressing and it would provide tips to alleviate the pain of engorgement. We were to watch it and return it in a timely fashion. On the night we received the DVD we popped it into my laptop to watch it before going to bed. We watched approximately one minute before Kate was laughing so hard it was painful, no really, it was very painful to laugh for Kate. She had had a C-section a few days ago. Kate was clearly in too much pain. If we continued watching we would only laugh harder, so I slammed the laptop shut. I had tears running down my cheeks I had been laughing so hard. I don’t know who is responsible for making lactation videos like this, but perhaps, now this is just a suggestion, do not make the first breasts on the video also the largest breasts known to mankind. In fact, moving forward, I would advise the filmmakers to not feature these breasts in any lactation video, ever. They were comically large, needing 3-4 hands to handle them. They were cringe inducing. They gave us an attack of the giggles like nothing had before. Actually, it is dangerous to watch this lactation video. You might literally bust your gut laughing if you have just had a C-section. Or, like me, you might become scared of laughing to death.

We decided that only I should watch the hand expression video. It was too dangerous for Kate to watch again. I would get myself in a very serious mindset and then watch it, hoping to tell Kate what I learned. It took a couple weeks to finally watch the video though. Lactation had twice asked for it back, the first time Kate and I told them the truth, we had tried watching it once already but couldn’t stop laughing. I am not sure lactation found this amusing. The second time they asked for the DVD I knew I had to buckle down and watch. So, one of those days at the NICU I brought my laptop and the DVD with me. While Kate was holding London, I backed my chair up to one wall of the pod, put on my headphones, and watched the lactation video. I kept my cool, not even bursting out in tears or shrieks of disgust. Not once, I tell you.

I shared with Kate what I had learned. She was impressed. Not like Kate’s breast milk volumes needed help. I mean, by now I was spending part of everyday rearranging containers of breast milk in the chest freezer, the chest freezer we needed to buy solely to store breast milk. But Kate’s volumes did increase and she was feeling better too. We joked that I knew more about hand expressing breast milk than she did so I should try to make a little money from it. I could print some business cards and walk around the NICU offering my services to anyone who needed them. I even had a business name, “Hand Expressions by Bryce.” Simple and to the point.

By day 57, or March 28, Kate was producing 1,863mls a day, or 63 ounces of breast milk. To put that in perspective, London took a total of 800mls yesterday  (July 23) and that is the most she has ever eaten in one day. In fact, it took London a long time to drink as much milk in one day as Kate got from one 20 minute pump. After a while I could no longer rearrange the breast milk in the chest freezer. It was full. It took us a while to accept that we were going to need a second chest freezer for milk, but I finally broke down and snagged the second one at Costco, one I had been eyeing for a couple of weeks.

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In foreground, first chest freezer maxed out with breast milk. In background, second chest freezer at the ready.

For a few months we rented a Symphony, which retails for $1500-2500, and kept it upstairs in our room where Kate did most of her pumping. We started to call it the Pumphouse. If we were home, Kate had to sneak off to the Pumphouse every three to four hours to spend some quality time with the Symphony. It was very tough keeping that schedule through the night, but Kate did an excellent job. I woke with her every time throughout the night and assisted in the bottling of the milk, the cleaning of the breast pump parts, the labeling, and then I would deliver the milk to the chest freezer in the basement. While Kate was hooked up to the Symphony we would queue up Netflix. We blew through the second season of House of Cards in thirty minute blasts. We moved on to movies, watching thirty minutes at a time of those too.

Toward the end of April, Kate was tapering off with the pumping. She had not dried up. No, no, no. We had filled over half of that second chest freezer. It was just getting to be too much for Kate to work full time and pump. But by then, the lactation nurses understood why Kate was putting an end to the pumping. Kate had a reputation around the NICU as a “super producer.” One day, a lactation nurse stopped by just to tell us that there might be another mom in the NICU who is producing more milk than Kate. It was impressive for all of us to hear. Good for her.

Much later, when it was time for us to bring London home, we had London’s staff write on one page of the journal we had been keeping about her NICU stay. One of our favorites from the lactation team wrote, “London, Just want you to know what a rock star your Mom was with pumping for you! She could have fed 3 babies in the NICU!! You are a lucky little girl to have the parents you do!”

I too believe Kate was a rock star with pumping. Heck, next week London is six-months-old and I can still dig around in our chest freezer for milk from March. Speaking of milk , it’s 11:30, time to feed her again. To the chest freezer I go.

London’s Email Updates

I sent the first of many emails updating family and friends about our situation at 2:43am on January 30th, one hour and nineteen minutes before London was born. It reads:

Hey Dear Friends,

Weve spent the night at the hospital because our little girl is coming early, really early. Kate felt some pain last night around 10 and we thought it necessitated a trip to the hospital. We are very thankful we came here because Kate’s water broke about an hour after we arrived. Kate is stable and the baby is doing okay for now, but Kate won’t be leaving the hospital until the baby is born. We don’t know exactly when that will be. It could be a day, weeks, or over a month.

We all need your prayers, happy thoughts, and whatever positive vibes you can send our way.

Love,

Bryce

Of course I had to send out another email very soon after that:

Update. The doctors needed to go forward with a c-section. Kate is doing great in recovery. Our daughter, London Grace Perica is also doing well. She was born at 4:02 this morning, 2 lbs 6 oz, 14.75 inches long. She’s stable. Very crucial period right now and I am so thankful for all your prayers and support.

Love,

The Perica Family

From that point on, email was the way to keep everyone in the loop regarding the many ups and downs of London’s NICU stay, but especially during those fragile first weeks. We received so many responses from these two small emails that it has taken me hours to scroll through them and the brief exchanges I had with some of you who asked specific questions about London’s health and how exactly you could support us through this time. The email conversations with some of you never stopped for the entire time we were in the NICU. Sitting down to write weekly updates about London’s progress or sometimes lack of progress was therapeutic for me. Writing the emails allowed me to calm down some after an especially frustrating or scary day. I wrote them next to London’s side, or during dinner at home, and sometimes they were the very last thing I did at night, tapping out emails on my iPhone in the dark with Kate sleeping beside me. It was a form of meditation. It is something that I would recommend to parents in a similar situation. Whether you are just emailing your parents or a huge group of friends, sending updates may trick you into thinking you are spreading the burden around. It may have had that effect on me.

Inevitably, I grew tired of sending out email updates about London in the NICU because all three of us just wanted the hell out. Writing the last update on May 22, three days after London came home was the best email I have ever sent. I have shared it below. Thank you for responding to emails throughout London’s stay and for reading further on this blog about her time in the NICU and raising her there and at home.

May 22, 2014, 11:34pm

Friends,

On Monday, after 109 days in the NICU, Kate and I walked out of the hospital with London. We were helped out to our car by one of our primary nurses, Megan, who was there the morning London was born and admitted to the NICU. By Monday, we had shed enough tears with Megan (and London’s 3 other primary nurses) throughout London’s NICU stay that there were only smiles on our faces as we loaded London into the car, hugged Megan goodbye, and drove home very carefully.

London has come home with an NG tube since she was not taking 100% of her milk through bottles. Kate and I both placed NG tubes in London before she was discharged. London has the tendency to yank them out so we need to know how to insert a new one. When necessary, we use a pump to give her the rest of her milk. She is on oxygen, as are most preemies in Colorado when they come home. At this point, it’s also necessary to hook her up to a monitor at night. Baby came home from the hospital with a lot of hardware, but we’ve got it all figured out.

London had a follow-up head ultrasound before discharge. We received the results on Monday before we left. The bleed in her brain has been completely reabsorbed. However, her ventricles are still enlarged. At this stage the doctors would like to see them a bit smaller, but they aren’t concerned enough at this point to do anything clinically. They will monitor her closely in follow-up appointments. At this point, we wait it out a little bit and hope the ventricles decrease in size. This was not 100% positive news, so it was a little unsettling to receive it the day we left, but it does not really change London’s outlook at this point. Other news we received before London was discharged…She had one more eye exam before going home. Her ROP continues to improve.

Though we are sure to face quite a few more challenges with London’s health and development, we are of the mindset that the biggest and scariest obstacle, the NICU stay, is behind us. Thus, I am finally ending this long email chain. Thank you so much for all the meaningful and loving replies and for your interest in London’s progress while she was in the NICU. Thank you for the prayers. It was always humbling to know how many people were lifting us up. I could say thank you for so many more things, but it would be a long, boring list, which would fall short of expressing our gratitude for you and the profound joy that has come to us in our little girl and finally getting her home.

Our Love,

bryce, kate, & london grace

Little London’s Nurses

When I first met London’s primary NICU nurses I did not know just how special they would become to Kate and I. In hindsight, that I would come to think of them as extended family in a way was inevitable. NICU parents have to get away from the unit for their own health, but for many other reasons as well. Life goes on. Jobs don’t wait. Other responsibilities don’t disappear just because you find yourself in this incredibly hard situation. So, when it comes time to leave the hospital, you leave your preemie first and foremost in the hands of your NICU nurse. Of course, there is other support, other nurses on the floor, nurse practitioners, residents, fellows, and attendings, but the one who is on the front lines, the first responder, is the primary nurse for your child.

London had four primaries. From the start they were the most comforting, knowledgable, and loving people. They were her first, and they will always be her best, babysitters. They taught Kate and I most of what we know about raising a preemie. They explained every twist and turn of London’s treatments. I could go on and on and write a long list of the many things they did for London and for Kate and I, but why should I when I can just write this: they ushered me into parenthood with such grace that when it was time to leave the NICU with London it was hardest to say goodbye to them.

As I continue to write about the experience of having a preemie, I will write more about London’s nurses. But for now, I will end this short post with this thought that I had long before London was discharged:  London’s primaries are people who, no matter how well we stay in touch for years to come, I will treasure for the rest of my life because I will never forget the way London was introduced to this world and thus, I will never forget the people standing by her bed during that tumultuous beginning.

 

Hospital on the Horizon

Before London, I never really liked being in a hospital for any reason. Even if I was there for a flu shot or to pick Kate up from work. I only saw hospitals through a narrow, ignorant lens. I thought they were places where sick people go to stay for a while and at the end of their stay those lucky enough to leave are still sick or don’t know why they are sick. Those without the luck, arrive at a hospital and stay there until their death. This is a morbid way to think about a place designed to get you better, but I had this view for a couple reasons.

When your spouse works in a hospital they tend to convey some sad stories to you about things they have seen at the hospital. The stories could be worse depending on what unit they work in. For example, stories from the outpatient wing probably aren’t going to be as horrific as some from oncology. Well, I used to hear some pretty sad stories and they were very difficult to hear. I did not hear enough of the good stories because I always found myself thinking, how could you work at a place like that? How depressing. So when I would go into a hospital I would maybe just choose to see the very sick and that made hospitals nearly impossible to be in.

And then I got very sick in 2007…The short story about that experience is this. I had a bunch of weird things happening to me, headaches, Bells Palsy, partial, but temporary hearing loss in one ear, and iritis were among the most troubling issues. I had a CT, an MRI, X-rays, blood draws of all sorts, and I spoke with a lot of doctors and specialists. I never received a diagnosis. I got better, but I could not attribute that to treatment I received at a hospital, except for the steroids for the Bells Palsy and later for the iritis. I probably had a virus of some sort that was working its way through my body. Doctors never knew when it would be over. They couldn’t tell me what it was. And all those tests…negative. I had a big scare and I felt like it was just dumb luck that I got better, when really my body finally overcame whatever serious bug was screwing everything up.

My opinion of hospitals changed very quickly in January. The morbid thoughts were, for the most part gone. Of course I worried for the health of my wife and daughter, but for the first time the hospital was no longer a place where you go to die. It was a place of healing, of miracles. It was where you went to live. Even the sight of the building became a comfort to me. This particular hospital is huge and easy to see from many parts of Denver and so, when I wasn’t at the hospital with London, I could often look to the horizon and see her home and know that she was surrounded by the most professional and loving staff I could have ever dreamed of. This was our family’s fortress now. Not all rooms in it have a happy story to tell. Hope is sometimes scarce in this place, but I knew of an OR tucked away on the fourth floor where not just lives were saved, but dreams, hopes, and a future were salvaged because of a hospital. I will never think of them the same way.

Letter to London On My 31st Birthday, Her Day 4

Dear London,

You will remain for the rest of my life, the best birthday gift I have received. I did not expect to become a dad at 30. I thought I had a few more months, a little more time to prepare for your arrival. IMG_2967

On this birthday, your mom and I checked out of the hospital. It was extraordinarily tough leaving there without you, but getting home did make us smile. We can’t wait to bring you here. Aunt Kendra cleaned up the entire house. There was a giant balloon that said, “Baby Girl!” (a note from the present day: the baby girl balloon was still aloft, but slightly deflated, three months later when we finally disposed of it) and there were two smaller balloons that read, “Happy Birthday!” and “Welcome Home.”

Kendra left a birthday cake in the fridge for us too. It was about as good as a homecoming could have been without you there.

Your  mom and I were very tired so we fell right asleep for a nap before Nana and Papa arrived. Their arrival woke us up. I brought them upstairs aIMG_2968nd we all talked about you for a while in our room before we went downstairs for dinner. During our meal, I retold the story of your birth and what it was like seeing you for the first time.

After dinner, we took Nana and Papa to meet you. They instantly fell in love with you. Nana called you a miracle and of course they both shed tears. After a while we prayed over you, like we have been doing every night since you first arrived.

We eventually went home. What I want you to know about home on my birthday and, until the day you come home, is that it is just a shell where we eat and sleep. It is incomplete without you. Our hearts are always besides yours at the NICU. Here at home, we fall asleep trying to fill the void with videos and pictures of you. And then we dream of you. Sometimes we cannot sleep because of the worry at our core for you. As soon as we wake, you are our only concern. Our home’s potential is latent. We bought it just weeks ago with you in mind and it is only you who will make it what we so badly want it to be.

Goodnight London.