Month: February 2015

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.

12 Classics in 2015

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In 2015, like in 2009, I am reading 12 classics I have never read before. The first book, Moby-Dick, is almost out of the way. I am on page 430 of 624.

There are quite a few things I did not know about Moby-Dick, but two of them stand out. One, the length. I was thinking of 400 pages max. When I had seen the book on shelves it never looked quite this long. There are lots of words on each page. It takes a while to just read two full pages, especially when there are two paragraphs on each of those pages. The text is consistently all the way to the margins. I know, I sound like a middle-schooler after being presented with his first giant book with no pictures at all and small print.

And two, I was unaware of all the diversions Melville takes throughout the book. These chapters vary widely on topics, but all are pertaining to the whale. There were several chapters on the classification of whales. There were a few more on the accuracy and inaccuracy of depictions of whales in drawings, paintings, and sculpture. There was an ode to the whale tail. As annoying and out of place as these chapters might seem at first, they become enjoyable when Melville continues with the Pequod’s story and you, as the reader, have the whaling knowledge necessary to easily follow the what, why, and how of the whaling profession.

I hold Moby-Dick responsible for my lack of blogging lately. I am now quite invested and interested in the remaining pages of this book. With every bit of free time I feel the need to knock out a few pages because I just never know exactly when London is going to wake up. And, of course, the end of this book is in sight and I have other books stacked by the window tempting me with their perfectly square corners and pristine pages.

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.