Preemie

The Apple Watch, A Screen Too Many

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…And I’m not buying it…

The Apple Watch is not for me. I know, I know, a lot of people said the same thing about the iPad. Who needs one of those? But the two are not the same. When I want some actual peace and quiet, I enjoy storing my computer away, setting aside the iPad, and taking my phone out of my pocket and leaving it somewhere out of reach. I don’t want to take my watch off every time I want some peace.

It matters to me that the watch, like the computer, iPad, and iPhone, is another temptation to go down the rabbit hole of the internet, whether that is compulsively checking emails or entering the time suck known as Facebook. The internet and the screens on which we access the internet are only good in moderation. I feel a noticeable difference in mood when I shed myself of access to the world wide web. I relax a little more than I can if every one of those devices is pinging me with notifications and breaking news.

For me, truly cutting away from all that technology means I have to physically remove it from anywhere within reach. It’s an out of sight out of mind thing. If I keep my phone on me when I would rather be writing or reading then I will inevitably take a lap around the internet on it, making me less productive and having a negative effect on my mood. The watch would just be another temptation to do all that. I have a hard time envisioning someone with the Apple Watch regularly checking the time and doing nothing else with the gadget.

Now that I am a dad, ridding myself of screens has become much more important. I still catch myself looking at my phone a little too much and not at London. It breaks my heart when I think of giving more attention to my stupid gadgets than to the beautiful baby I spend every day with. Having a mini computer on my wrist is the last thing she wants and I agree.

I just can’t imagine having an Apple Watch and not increasing the amount of time I look at screens, which I think is more than enough already. And it makes me feel ill when I see toddlers walking around connected to their iPad already. The absence of a screen on my wrist will be another attempt to shield London as much as possible from lesser forms of communication than what we were made for.

She Sneezes Into Her Hand As Well

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She sneezed into her hand five minutes after it happened. I shook my head in disgust and in further disappointment in myself for not stopping her five minutes earlier.

We were all out at one of my favorite restaurants, the Bull and Bush, having an excellent weekend dinner. London was in a high chair eating off of the disinfected table. She wasn’t too enthralled with the food. It was great, but there was so much to look at so sometimes she just wouldn’t eat what we were offering her. When that happens we always set the food in front of her.

London is finicky about when she wants to feed herself versus when she wants us to give her food on a spoon or with our fingers. Right before our server walked up to the table London turned away from a piece of food Kate was offering her. Kate placed it on the table in front of London, knowing that London would pick it up eventually and feed herself. But there would be no time for that. The server picked up the piece of food and fed London right off her finger.

I was so freaking surprised I froze, didn’t say anything, and looked at Kate. Did that just happen?

Kate’s eyes answered back, yes, yes it did. 

Okay, I thought. It’s probably not that bad. Wait, who am I kidding here? That server just fed London like she was her grandkid (interestingly enough, she was plenty old to have a few) without any knowledge of London’s past. And we have no knowledge of where her hands have been. Does she wash them as much as she should? Not sure, but I found out she prefers to sneeze directly into her palm.

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Our old lofty perch, from where the Bull and Bush was within walking distance.

I thought about saying something to her or writing on the receipt, but the damage had been done. If she had some disgusting bacteria on her hand she had already gifted London with it. I know very well that at some point I will transfer a bug to London, but that’s the right of the parent to do. Plus, I know I have big pump action bottles of hand sanitizer on both floors of the house. I know my hands get dry and cracked from using so much of that stuff. I have the cleanest hands I have ever had in my life.

Yes, I was mad at the server, but I let it go. I was mostly disappointed in myself. We were both trying to be so nice that we didn’t say anything at all when it happened. And it happened so fast. If we were going to say anything at all it would have needed to be pretty blunt like, “Stop! What in the hell do you think you’re doing?”

I vow to never let this happen again, but I also don’t expect to come across too many servers who feel like they can hand feed my baby. If they do, I’ll throw being polite right out the window.

Graduating to a Bottle

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Last week I uploaded a video of Kate and I feeding London 1 ml of milk from a very tiny syringe. Though it was a long, long time until London could move on up to a bottle and I took many videos between that syringe and the first bottle, I wanted to skip to a video of an early bottle feeding.

In this video nurse Eileen is giving London a bottle. It was during a time of London’s NICU stay in which she was particularly stubborn about wanting to drink at all. Sometimes she was a champ, drinking her whole feed, but at other times she drank 5 ml and looked at us like, what? I’m done. Just gavage the rest and get on with it.

I think I had been trying to feed London and handed her off to Eileen, hoping London would cooperate a little more. She does in the video at least, but I can’t remember if she finished that particular bottle. Most of the time she did not. Thus, when it was time for London’s NICU discharge she came home with an NG tube.

One thing you see here in the video of London is the pacing that we had to do for quite a long time before London had the energy and the skill to take a constant flow from the bottle without choking and also learning how to breath properly during feeding. We would give London some flow from the bottle, for three seconds about, and then tilt the bottle back and let her catch her breath and finish swallowing the milk. It seems simple enough, but you also had to keep her body tilted to the side as well. And after that, you had better familiarize yourself with London’s cues…or else a nurse might give you heck from the other side of the pod, “And dad’s just choking the baby over there.”

When my sister visited London she was eager to give her a bottle. I felt bad, but I just had to say no. I went on to explain that it wasn’t like giving a full-term baby a bottle, at least not yet. After watching me feed London, my sister acknowledged that it looked difficult. I’m glad she did. At that point, I was only willing to hand London to someone other than Kate or a nurse if all they were going to do was sit with her.

I remember the day I discovered that I did not have to pace London’s bottle anymore. We were waiting for a ROP exam, and she was a little moody so I brought out a bottle and I tilted it up so the milk started flowing and I did not tilt it back down again until the bottle was empty. I was astonished and looked from the bottle to London’s happy, chubby face and back to the bottle. I knew we had reached a milestone in London’s feeding progress. But back down to earth we came, for the ROP exam was next.

March for Babies

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Denver’s City Park during the 2015 March for Babies.

This last weekend we walked with London in our family’s first March of Dimes event. Last year we were still in the NICU when it took place and prior to that, I had no clue what March of Dimes supports. The organization exists to help moms have a full-term pregnancy. And if that doesn’t happen, then they provide help, support, and resources to preemies and their parents.

We had a hectic week so we actually thought about not going to Denver’s City Park to participate in the walk this year, but we were both thankful we did. We even got to walk with one of London’s primary NICU nurses. In addition to seeing some other nurses who took care of London, just being in the presence of more than a thousand other preemies and their parents was empowering…even if we didn’t strike up a conversation with any of them.

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London and Kate wearing purple in support of preemies and ending premature birth.

The 5k walk meandered through City Park. We started behind many slower walkers and passed most of them by off-roading it in the grass. Toward the end, we were out in front with other fast walkers scattered about. We slowed down a bit as we neared the stage of the walk where posters were placed in the grass showing pictures of preemies at their birth and then a few years later, strong, energetic, and healthy. The posters shared the gestational age at birth and sometimes the weight. As we walked by I glanced from poster to poster noting the gestational ages, “Born at 38 weeks…..Born at 25 weeks….Born at 40 weeks….Born at 33 weeks….Born too soon.” And then, a little later on, “Born at 19 weeks,” with a picture of impossibly small feet and a message of why the parents support March of Dimes, because no parents should have to suffer losing a baby.

When I saw the first “Born too soon,” I think I had a sharp intake of breath. It was a stark reminder that we were walking for the preemies who didn’t make it as well as those who have. We came scarily close to having a “Born too soon” baby. Whatever it was that set things in motion for Kate’s premature delivery, we will never know, but I am so glad things happened when they did and not 2+ weeks earlier. I usually don’t dwell on this what if?, but the walk made me think about it a little more than usual. To change my train of thought was easy this time. I just had to look up. I was surrounded by hope, happy endings, and amazingly supportive parents.

Early Smiles

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London’s early smiles were one of the first signs of how happy a baby she would become. At first I thought the flashes of a smile I saw were just the typical baby imitating the adult’s facial expressions, but by the time this video was taken on her two-month birthday I had changed my mind.

You can see London try to look up at me. The comfort of knowing that dad is holding her breaks through those hiccups and appears as a smile on her face. And then, back to hiccuping. Kate says, “She smiles a lot…”

She did then and she still does. She is constantly reminding me to be happy and then to stay happy. Even in those most frustrating moments of parenthood when I am in grumpy land and want to stay there, her joy cracks the scowl on my face and I surrender to her smile.

We are blessed and spoiled with such a happy baby, who continues to amaze the most weathered parents, grandparents, and great grandparents by her no-fuss, ebullient temperament.

Too Many Journals

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I would think twice about giving new parents a journal. Chances are, they already have three…at minimum.

They don’t need but one place to write their thoughts down about the expecting, the arrival, and the aftermath of their first child. We were lucky and probably only got about five journals, enough to record every minute of IMG_6093every day for the first three years.

Among people who journal, my devotion to it is moderate and, still, I am considerably disappointed by my lack of devotion to it. After all, it’s what writers do.

I’ve got a bookshelf of empty journals and I bet quite a few people can say the same, long before they have kids. For me, the site of an empty journal, which has been on my bookshelf for a decade, can be a consistent reminder of failure. (Note to self: move all empty or one-tenth-completed journals to box in basement.) Perhaps it’s the same with the people you are giving that journal too. Perhaps it’s not. But before you go ahead and give them that new-parent journal you better do a journal inventory of their bookshelves (in all rooms) and then assess whether these parents need more blank pages in their house.

If you do that assessment and you decide to still get a journal, I have a recommendation. It’s called Mom’s One Line A Day. It’s my favorite journal with the crappiest title. It offers six narrow lines of writing space for each day for five years. On each page you can see what you were doing on the same date in a five-year span. Now that’s a crapload of journaling, don’t get me wrong, but at six lines a day, even if your handwriting is small, it fills up fast.

Even with that knowledge, I fail to write in it half the days, but since Kate and I have used this journal for over a year now we have a considerable record of London’s first 15 months (nearly).

More momentous are some days than others, but I have found it helpful even to write down the seemingly mundane. Example: April 21, 2015 – 2 naps still. Read HP (book 6) out loud to you and some of A Game of Thrones. Outside in backyard you watched as I planted some herbs.

And right above that entry, I can see that on April 21, 2014, I wrote: Dad started reading The Hobbit to you today. You can’t truly follow the story but you know my voice and somehow you can tell when I start reading each day because you smile every time. It’s truly amazing.

So, if you must, pull the trigger on the Mom’s One Line A Day journal. It’s just the right dose of urging the parents to write about this spectacular time in their lives.

A 1 ml Bottle

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A long way from a full feeding, but a good start.

There were about two months of training from the day (February 27, 2014) I took this video of London until she could take a crack at an actual bottle. What an amazing step for her this was. A 1 ml syringe holds quite a bit more milk than that cotton swab we used to put in her mouth. We were thrilled in this moment.

I have posted very few videos on this blog so far, but I have so many I would eventually like to share and perhaps write about. Plus, on days I don’t have a chunk of time to write at length about raising London, sharing a video is a great option.

The Complicated Age of Preemies

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Home at last. London’s 4-month and 1-month birthday.

“How old is she?” The simplest of questions for parents of full-term babies to answer, but not so for parents of preemies because there are two answers for this one question.

At some point, a baby arrives so early that their actual age is going to be different from their developmental age. For example, my daughter, London, was born at 26 weeks gestational age, three months early. Her birthday is January 30, 2014. Her developmental birthday is May 4, 2014. This means London’s adjusted age is 11.5 months, even though she’s been with us for 14.5 months.

So how do I answer the question, “How old is she?” Well, sometimes I lie. If the person asking is asking because they are wondering why London is not walking and or talking because she’s the size of some two-year-olds, I lie and give them the adjusted age. By doing so, I direct the conversation toward the obvious and usually hear something like this: “My God, what a big baby.” I would much rather talk about how big my baby girl is than tell the person the truth and then have the conversation inevitably slide toward how London is, developmentally speaking, three months behind.

That said, I think most of the time I tell the truth and answer, “Almost 15 months,” because most people, whether they dwell on my answer or not, just aren’t going to say anything else. But I know, because I’ve seen it in their eyes, that when I say London’s real age some people look a little confused. I don’t know what they are thinking exactly, but it’s something along the lines of:

“Shouldn’t she look older?”

“She should be crawling by now.”

“She should be walking by now.”

“She should be talking more by now.”

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At seven and four-months old.

When I feel this reaction in people I know I could take the time and explain London’s two ages, but somehow just saying, “She was born three months early,” sounds cheap because I’m taking this huge, scary part of our lives and trivializing it in six words. Plus, the majority of people will not be able to comprehend what those six words truly mean. Getting stranger after stranger to comprehend that over and over again can be exhausting. I know, because I would make a casual effort to explain London’s prematurity to nearly everyone that asked. This was right after she came home from the NICU. Still on oxygen. Still rocking cheek patches. NG tube still snaking across her face. Understandably, those people who asked how old she was back then knew they were probably going to get something more than, “3 months.” But after a while, parents of preemies tire of going into the explanation thing. So, like parents of full-term babies we get back to basics with a simple, short answer, “Fourteen and a half months.”

Or am I going to say, “Eleven and a half months,” this time?

Oh hell, maybe I’ll just split the difference.

“Thirteen months.”

Wage Equality

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Every year someone at the Oscars uses their acceptance speech as an opportunity to get up on their soapbox. And every year people in the media, politicians, and sometimes people in your own living room get slightly irritated to irate about these moments when someone “supposedly” strays off topic, like the actor should not have the freedom to do anything but praise the cast and crew of the movie they starred in and, of course, thank their parents, wife, husband, and/or kids.

This year, as you may recall, Patricia Arquette used some of her time at the mic, while accepting the award for best supporting actress, to give a little speech on how important she thinks wage equality is. Here’s a little excerpt:

To every woman who gave birth, to every taxpayer and citizen of this nation, we have fought for everybody else’s equal rights. It’s time to have wage equality once and for all. And equal rights for women in the United States of America.

I was surprised this year at the uproar over Arquette’s speech and her backstage comments as well. It’s like every year people forget that some celebrity is going to stand up and fight for what they believe in or what they want others to believe in. And then when it happens again. Outrage. Shouts of, “Get on with the show.” Etc.

What I did not expect is for people to get all pissy about a call for wage equality. As a husband to an amazing woman who is the primary breadwinner in this family (always has been, likely will be for years and years to come) and as a father to the most precious girl I will ever know, wage equality is extremely important to me.

Someone promoting wage equality at the Oscars isn’t going to bother me.

I’m not going to be bothered if a pastor ends his or her sermon with a call for wage equality.

I would be delighted if I was woken up in the middle of the night by someone outside calling for wage equality.

A call for wage equality is just never going to bother me and I will never understand why this year it irritated so many.

Nana Remembers London’s Birth

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I’ve been meaning to share this comment since it was left on January 29th, when I wrote this post. The comment is from my mom, recalling the night and early morning of January 30, 2014.

I have been thinking all day about the phone ringing this night a year ago when we were sound asleep. Groggy and confused we listened to you tell us Kate was in distress, the docs were monitoring her and you would keep us posted. We hung up the phone, prayed through our tears thinking how can a baby live at 26 weeks? And we called her Grace not knowing you’d give her that moniker as her middle name. Your next call came to say Kate was about to undergo an emergency C-section. More tears and ongoing prayer. I remember my heart was beating so hard for what seemed like hours but you called again less than two hours later to say “London Grace” was here. Dozens of doctors and nurses were looking after her and Kate was in recovery. Then you asked, “Do you want to see a picture of her?” And so it began.

Still, I can’t read this without fighting back some tears. I had sort of forgotten that I asked my parents if they wanted to see a picture of their granddaughter. Such a question seems a little odd, but in the moment it was not an unusual precaution. The one picture I had of London at that point was graphic, for lack of a better word. She was vulnerable and the picture succeeded in showing that. I must have thought that maybe they would not want to see a picture of her until she stabilized some. Had they felt that way it would not have bothered me. Obviously, I was still protecting myself, but I also thought about protecting others and this was a way I tried.

I have known for a long time now that there was no protecting me or anyone else if things had gone horribly wrong during those first days. I was in shock and still under the illusion that I had any control over what happened next.

Baby in the NICU, Phone Always On

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I love having my phone on silent. Even though my phone is consistently within reach, having it on silent makes me feel a little more free of it and maybe even a little disconnected. So when my grandma called me this morning it was only by chance that I noticed the iPhone’s screen light up, catching it out of the corner of my eye.

Of course, when your phone is on silent there are missed phone calls and missed texts. You sacrifice a little instant communication, but you gain some uninterrupted down time from the phone. It has become habit for me to switch my phone to silent while I am winding down for the night. At some point the next day, usually, mid-morning, I’ll turn the ringer back on.

Switching my phone’s ringer on this morning after my talk with my grandma made me think of that first night Kate and I were back from the hospital after London’s birth. I had reached over to my phone on the nightstand and switched it to silent. That immediately felt like a dumb thing to do and it slowly dawned on me that as long as London is in the NICU, my phone will never be on silent. It will rarely be anywhere other than my pocket. Its volume will always be at least 3/4 of max.

For 109 days, I did not want my phone to ring because a call, I assumed, would be bad news. But for 109 days, it was also imperative that I never miss a call or a single text message. If it was the NICU calling, then I could not afford to miss whatever breaking news they had to tell me, no matter how dire it may have been. Nowadays, the smartphone is a natural accessory to our everyday lives and, while we were living out a hyper-alert and worried stage of our lives, it made sense to make sure all avenues of communication stayed open.

When London did come home, I vividly remember taking great pleasure in muting the ringer on my iPhone that first night. It was ceremonial. A little victory. And in the morning, a big victory, not having to hop in the car and drive to the hospital in order to see my daughter.

Have Preemie, Will Not Travel

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Oh, the places we’ve been since London was born.

From January 30, 2014 to May 19, 2014 I left Denver once, for a quick trip north to Fort Collins. I was there for six hours. Since London was born I have spent three days outside of the state, not too far away, in Green River, WY. It took me two minutes to draw on a map where I have been in the last 14 months.

Having a baby will naturally limit your geographical existence. Having a 26-weeker will completely shut your travel down. From what I have heard about other parents who had a very early baby, we have been ambitious in our reach across this relatively small map. I have heard of parents who will not take their baby outside the house but for walks. These parents have decided that taking their preemie to the grocery store, the shopping mall, or to Target, puts their preemie at too great a risk of getting seriously sick and going right back to the hospital. My family did not make it out of the NICU without receiving such advice, from a nurse nonetheless. We were blown away by the severity of such restrictions and quickly conferred with other nurses that we did not have to stay under house arrest with our preemie until flu season was over.

We have followed certain recommendations such as, do not fly anywhere with your baby until flu season ends. Locking baby inside an incredibly small area for two hours with 140 other strangers sounded like a really bad idea to us as well. Not flying anywhere for such a long time (our last flight was in mid-December 2013) has been incredibly weird and challenging, but also much better than having a very sick daughter back in the hospital.

The feeling has been similar to putting travel and adventure on probation for over a year. Localized adventure has still been possible and we have taken advantage of that with trips to Wyoming, Breckenridge (twice), Steamboat Springs, and Estes Park. If it wasn’t for weddings, I am not sure we would have made all those trips, but thank God for weddings because these short getaways have quenched at least a little bit of our thirst for travel.

Flu season is almost over. Besides the obvious, this means as a family we are free to move about the country. And again, weddings will be the catalyst of much of that travel, but instead of weekends in the Colorado mountains we will get a weekend in southern California and Nashville, with some excursions in between. The destinations are exciting. The process of getting there, i.e. flying with London and bringing all the baby stuff along with us, does not excite. However, if London’s behavior as a baby can be a predictor for how she’ll be on a flight, I can say she probably won’t put up much of a fight. It’s her 40 lb. car seat that will.

The Troubling Loss of the Car Seat

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Fully functioning baby in the now retired car seat.

I felt the familiar bite of envy today when I saw a dad walking into a bookstore carrying his baby in a car seat. Oh, those were the days. Yes, they were.

But wait, you might say. Aren’t you excited for your baby to grow up? To walk? To be freer? Of course I am. She is crawling right now, but all she wants to do is stand at the coffee table and cruise around. In a little more time she will be walking with me, but right now we are in a cumbersome interregnum between the too-big-for-the-car-seat size and the not-yet-walking stage.

Benefits of the car seat era include easily carrying baby during any errand, including, but certainly not limited to, a stroll through the bookstore, a coffee run, and going to pick up a book at the library. Also, easily transferring baby from house to car, to inside bookstore, back inside car, back to house, and up to room if baby has fallen asleep in car seat. All this used to be done with one convenient baby bucket (receptacle or repository I like much better, but it just sounded weird, “baby repository”).

But now upon arrival anywhere we must transfer baby from big, new, giant booster-type seat for extra-tall babies to the stroller, also great for extra-tall daddies.

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Fully functioning much bigger baby in the new, custom-built-for-huge-people, booster seat.

The other option, and this is a big ask, is to carry her sans stroller. Since she’s 25 lbs and 31 inches, one better hope the errand does not take longer than expected if you spring for this non-stroller option, especially if you have already lifted weights that day.

This might be the first of many posts in which I sort of (or jokingly) mourn losing the conveniences of the infant, but also recognize the perks of getting older and growing bigger, like her booster seat (which is one indestructible gadget) and her current obsession with pulling to stand. These are great things.

But the other point of this post is that I cannot shake the memory of the days when I could carry London around in her car seat, sometimes with just a few fingers wrapped around the handle and the other two fingers carrying a six-pack. The ease. The comfort. The convenience. Oh my.

 

 

Generous Ventricles

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The hardest day to get through was Wednesday, the day after we got the news that London would need an MRI and a neurosurgery consult. Though we knew that the challenges of having a preemie were not over, we did not expect to encounter an obstacle quite as scary as this. But, with some prayer and time we reacquainted ourselves with the frame of mind necessary to get through the NICU days. That frame of mind is a place where you never forget that you’re not in control. The NICU does not allow for you to believe you are in control of anything. It is like you have been dropped into a boxing ring and all you can do is roll with the punches, no telling how awfully painful the next one is going to be, nor from where it will be coming. We got pretty good at that last winter and by Thursday I think we both felt better in a way. I even made a joke about it. After Kate asked me what I had decided to give up for Lent I said, “Hope.”

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London at 9 months.

We waited until the following Tuesday for the MRI. We were told it was a rapid MRI, a brain shunt series, which would take about five minutes and London would not have to be sedated for it. The consult would follow right afterward so there would be instant results.

At Children’s we were taken to an MRI waiting room. There were no small gowns for London to wear so she wore pants half a foot longer than her legs and a top that looked like a Snuggie. Kate and I chose to be in the room for the MRI so we had to get rid of all metal we had on. Zippers were okay. After a few minutes we were ushered down a very long hallway into the MRI room, where the door was lined with a metal detector, ready to catch any metal on or in our bodies that we forgot to mention in the screening process.

This MRI room was out of a Sci-Fi movie. It would have looked right at home in Stanley Kubrick’s 2001: A Space Odyssey. The walls were of white gloss and the lighting made the room glow an interesting mix of blue and white. London was placed on the MRI bed, which had a blue pad on it that the nurses kept calling a “blue snuggly.” They warned us that once London was on the bed, they would fold up the sides, buckle them together, and suck all the air out of the snuggly to vacuum pack London. They added, kids don’t like this very much and they start to squirm and cry.

We folded up the sides of the snuggly, snapped the four buckles up from London’s feet to her upper chest. Her head was braced with many cushions, but first earplugs were added to protect her from the noises of the MRI. And then a nice lady sucked all the air out of the blue snuggly. By all measures London seemed to enjoy the whole experience. She did not make a peep and was even smiley. The bed slid into the MRI and the scanning began. London could look toward her feet and see us standing there waving and smiling back. She made two noises of distress, but quickly calmed down when she saw us. Five minutes later, she was done, and free from the blue snuggly.

We then had to go upstairs and check in for the neurosurgery consult. Within ten minutes we were sitting with a very nice lady who did not cut to the chase right away, but by the way she spoke and by the words she chose, I had a good feeling. She gave us a complete rundown on hydrocephalus and brain shunts. We looked at images of London’s head. In one image we got to see all of her teeth, although she only has three that have broken through. The rest of them were floating at various heights above and below the mouth. We went over the symptoms of hydrocephalus. There was a lot of talk about the size of my head. This was not news, but to prove the point the lady measured my head to confirm. 63cm. She said anything above 59cm is huge. And hey, it turns out Kate’s head is sort of big too.

London, we were told, has generous ventricles, but shows no signs of hydrocephalus. Of course, we should still monitor her head size and maybe at age 2 another MRI. Apparently, the MRI images told the doctors that there was nothing to be “excited” about, an interesting choice of words. If there was an issue, excitement would not be the feeling I would have. I found myself excited because there was not an issue.

We spent a very long time talking about London’s head and why it looks like London has adjusted nicely to her generous ventricles. As soon as we were out, Kate returned to work and I called my parents who, I know, were anxiously waiting for news and probably not expecting to have waited this long.

I returned home with London, relieved to an extent I cannot describe. I spent a lot of that afternoon and evening looking at London even more than usual, admiring her strength and attitude, and imagining the day I would tell London about the first year of her life. What would I tell her about a day like today? And what about the days far scarier and more exhausting than this one? I don’t know, but I know she will love the ending.

Waking Into a Nightmare

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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

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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

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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?

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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

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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.