26 Weeker

Emails and Poetry

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I rely on my parents to send me inspirational emails every so often. Yesterday, on my 33rd birthday, I received such an email. My mom encouraged me to go to a blog she regularly reads, to read a specific poem, and to listen to a hymn.

The blog is Barnstorming.

The poem found in this post is “Sure On This Shining Night” by James Agee

Sure on this shining night
Of star made shadows round,
Kindness must watch for me
This side the ground. 
The late year lies down the north.
All is healed, all is health.
High summer holds the earth. 
Hearts all whole.
Sure on this shining night I weep for wonder wand’ring far alone
Of shadows on the stars.
 ~James Agee
The hymn:
https://www.youtube.com/watch?v=Wio1hcuAAAk
I found the poem and the hymn deeply moving. I wrote my mom back and thought I’d share that note on here:

 

Truly loved that poem, but especially the song. It reminds me of the Christmas Night: Carols of the Nativity album from the Cambridge Singers. I found the song on iTunes and bought it already.

It made me think of the the 29th of January two years ago. As Kate and I went to bed on the 29th just a few days ago we quietly talked to each other about how London’s birthday celebration will always start on the night of the 29th because that’s when our miracle started. That night is so fresh and raw. Anytime I dwell on it I immediately start weeping, for several reasons, but maybe most of all because of what we have now, a boundless, healthy 2-year-old, which seemed to be outside the realm of possibility on that night two years ago and for many months afterward.
Kindness must watch for me
This side the ground.
Love you,
Bryce

How to Help a NICU Parent

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A friend recently asked me for some advice. She knows someone who just IMG_3089_127883had a preemie at or around 26 weeks gestation and wanted to know how she could help them out, what to say, what not to say, etc. She gave me permission to post my response to her. It follows:

I am happy to share my advice. Some of it will be based on the assumption that you are in the same town as your brother and Erin and their new daughter, Harper.

Well, having a kid in the NICU is the most exhausting thing Kate and I have ever been through. Very important question: is this their first kid? If not, well, it’ll be even more exhausting than our journey. Anyway, exhausting, so the last thing I ever wanted to do when getting home from the hospital every day was cook. It’s sort of become a cliche, but cooking for them would probably be a huge help. I don’t think Kate and I went to the grocery store for 3 weeks after London was born. Without all the meals we received, we couldn’t give London as much attention as we did. We had one less thing to worry about and that was huge because having a 26-weeker is an all-consuming worry.

The first few days of NICU care are possibly the worst. Once the baby makes it a week, things can start to get a little easier. So now could be the most terrifying of days for your brother and his wife. It all sort of depends on Harper’s situation. Was this an emergency c-section? Did they have 24 hour notice so they could get some steroids to Harper before she was born? London did not have the benefit of steroids before she was born, which really set her back for some time. She was on the ventilator for nearly three weeks, if I’m remembering correctly. I’m not sure what I’m getting at here, but maybe it’s just that I know I was very open about London’s health and situation throughout her NICU stay. I sent out near-daily email updates to a large group of people. I would have never been able to tell all those people independently. So if your brother is open to the idea, I’d recommend that. Or if someone in the family wants to keep other family members and friends dialed into the situation by doing email updates then that would be a big help too.

I’ve completely forgot to mention that it’s so great they named her. I know that naming her is a commitment of the heart and soul that you resist when you see such a small and fragile human being. But it’s a big step and it might bring them some hope. I remember when London was just ten minutes old and being transferred from the OR to the NICU while Kate was still on the operating table, the doctor asked me what her name was, and I was just put on the spot and had to say it loudly enough that everyone in the OR could hear it. I didn’t know it then, but in hindsight, that was a pivotal moment of accepting as truth something I still couldn’t believe was happening.

In terms of what not to say, that’s always tough to answer. You know? It depends on the person’s tolerance of the cliche, like, “Everything’s going to be alright.” We heard that a few times and I may have even said it later on in London’s NICU stay, like in month 2 and 3, but I did not like hearing it in the first few days or couple of weeks even. I just wanted to know the specifics of London’s situation and all I wanted to share were the specifics. I didn’t want to speculate with family members and friends. I just tried to avoid the “what ifs”, so maybe help them do that.

I’ll stop writing after this next point. At three months early, Harper is going to be in the NICU for a long time. It’s important for your brother and Erin to get time away from the NICU. That won’t be right now, obviously, but later on it will be. As a NICU parent you feel the urge to be at the NICU as much as possible, but it is essential to get away from time to time. We wanted our health and our sanity while London was in the hospital and I think we may have lost both if we stayed there round the clock for the first month. Our NICU nurses were exceptional in that they all encouraged us to take breaks from being at London’s bedside. Clearly, we still went to the hospital every day for 109 days, but the time away from the hospital was almost as important as the time there. We needed a chance at rest and revival before facing the NICU’s minute by minute ups and downs. So, when it’s time, encourage your brother and Erin to get away, even if it takes you spending some hours by Harper’s side. Perhaps they will be uncomfortable with it at first, but they will appreciate it.

How’s that for a disjointed email? I mean, there are so many things that come to mind. Please, let me know if you have other questions. Sorry they are going through this. I hope Harper is doing well.

*All names in this post have been changed. 

One Year Ago Today, We Left the NICU

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London’s first night home. I already look horrible.

Today is the one-year anniversary of London’s big move from the NICU to her new home. Reflecting on that day a year later, I think I made the right choice by not overthinking what a big change it was going to be for London and for us.

I knew it would be an exhausting transition, but my thinking was that I would roll with the punches, get knocked down a few times (which I did), adapt my style (easy, give up sleep), and then hang on for dear life and at some point in the future I would come out a practiced and knowledgable parent (still looking to the future on that one, at least in some regards). To me, going through that process seemed easier than trying to be ahead of the curve. Plus, that would take time to read and figure out what I was doing wrong. After 109 days in the NICU and then starting parenthood all over again when London came home, we did not have time for that.

Learning London’s cues taught me nearly everything I needed to know about taking care of her this last year. A few cues are exclusive to taking care of a preemie, like knowing when to stop the bottle feed and move forward with the tube feed, or knowing when 1/8th liter flow was not enough or if it was just right. I relied on London’s pediatrician, her nurses, her physical therapist, her occupational therapist, and both sets of grandparents to fill in the gaps in my knowledge.

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Today. Playing with her Little People farm.

A year later, London is far easier to take care of than she was with all the accessories she came home with. And, I am far more rested than those first days and weeks she was home. I am still tired most of the time, but I have coffee for that.

London’s first year home bears the mark of many a preemie: daily doctor’s appointments at first, then weekly, and then gradually monthly, with some major scares along the way. I hope and pray her second year at home will be smoother than that, that it will bear more marks of hope and promise than it will remnants of her harrowing beginning.

Surviving at 22 Weeks

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“Do you want us to save your baby?”

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London at one-day old.

That’s a question you may have to answer if your baby is born earlier than 24 weeks, the current gestational age of viability. In fact, you may not get that question at all. Quite a few NICUs do not have the means to even attempt to save a 22 weeker. And, from the sound of an article I read in the NY Times yesterday, some doctors will not try to save a 22 weeker if they aren’t breathing on their own. And the chances of such a preemie breathing on their own, if the mother didn’t receive corticosteroids, is extremely slim, if it’s possible at all.

Yet, there are some 22 weekers who have made it, as detailed in a recent study, from The New England Journal of Medicine, mentioned in the aforementioned article.

The study, one of the largest and most systematic examinations of care for very premature infants, found that hospitals with sophisticated neonatal units varied widely in their approach to 22-week-olds, ranging from a few that offer no active medical treatment to a handful that assertively treat most cases with measures like ventilation, intubation and surfactant to improve the functioning of babies’ lungs.

The study involved very premature babies, those born at 22-27 weeks. Among the 22 weekers, there were 78 cases:

18 survived, and by the time they were young toddlers, seven of those did not have moderate or severe impairments. Six had serious problems such as blindness, deafness or severe cerebral palsy.

7 out of 78. So at 22 weeks, there’s less than a 10% chance of surviving without any severe, lasting impairments. Survival rate at 23 weeks was about 33%.

The article detailed the varying strategies used by hospitals around the country. Some hospitals are very ambitious and with the parental approval, go after all 22 weekers. But, understandably, some hospitals stick to the 24 week line as the viability tipping point. A doctor describes his hospital’s strategy this way:

At his hospital, “we go after the 24-weekers,” he said. “If it’s 23, we will talk to the family and explain to them that for us it’s an unknown pathway. At 22 weeks, in my opinion, the outcomes are so dismal that I don’t recommend any interventions.”

At 22 and 23 weeks, I am glad that parents are asked the question I opened this blog post with. After having experienced the emergency delivery of my daughter at 26 weeks and then the following 109 days in the NICU, I would hesitate to answer yes in a 22 week or 23 week situation. My gut tells me at 22 weeks, I would say no. At 23, I’d have to think about it a lot more. It would depend on whether or not my wife received steroids. There was no time for steroids in London’s case, and that set her back significantly even at 26 weeks, nearly a month older than the earliest babies in this study.

It was a fascinating article to read. Here is the link again. I am amazed that 22 weekers can survive, but blindness, deafness, and severe CP are not minor complications. And those are the 22 weekers who make it out of the hospital.

 

Another Day, Another Echo

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Two days ago I posted “Turning One Again“. In that post I mentioned that this time last year London was going through a bunch of new tests to find out why she was so tired. Actually, “new tests” is incorrect. By May 4th, 2014, London had had several echocardiograms, she was just going to have another. I thought I would share a video of the last echo she had in the NICU. Kate had stopped by London’s room on the way to work (in the building next door) and had wound up getting to see the echo.

I do not expect you to be interested in watching a baby get an echocardiogram. The event is not spectacular or rare at all if you have had a preemie. But what is exceptional about the video is how London is so cool with it. She yawns in the middle of the video, like, c’mon, get this over with…it’s not my heart that has an issue.

Kate sent me the video that morning before I had made it to the NICU and it warmed my heart. This was classic London–so extraordinarily comfortable with another intrusive procedure in the NICU–that it did not surprise me all that much. London remained unperturbed throughout this test and others. Over the course of 109 days in the NICU London’s attitude absolutely rubbed off on us. We were never happy to have to sit through another echo or eye exam, but seeing how tough London was through it all made us roll with the punches like old pros. You will stress yourself to death if you can’t find a way to cope. Looking to our baby for strength proved to be one of the best strategies to weather the storm.

I just realized I posted this video on the blog already, but it was months ago and in a different context. Thanks for stopping by!

The Story of London’s Birth

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This picture…because it’s Cinco de Mayo!

A few months ago I wrote a post linking back to the story of London’s birth, the first posts on this blog. It had been a while since I had mentioned them and wanted to make sure people were aware of them, especially since they were now buried in the archives.

I have finally done something I should have done months ago. I have posted links to London’s birth story in the About the Author tab of this blog. I encourage you to read those posts if you have not.

In the meantime, happy Cinco de Mayo! I made a margarita last night following this recipe. It was delicious, but to make more tonight I had to raid the limes at the grocery store today. You will need a lot of limes. Enjoy!

Turning One Again

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May 4th. May the Fourth Be With You. It’s Star Wars day.

And it’s also one year from London’s due date. It’s her one-year birthday (developmentally). It is a significant milestone, but I think May 19th will be more of a celebratory day because that will be the one-year anniversary of London’s homecoming.

This time last year we were going through a stressful stage of London’s NICU stay. We were hoping to have her home by now, but we were hitting really big snags regarding London’s energy. The journal entry from May 4, 2014 reads:

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May 4, 2014.

Eileen and Megan (nurses) are very uncertain about why you are so tired all the time. Will ask questions with docs tomorrow. For now, starting 24 hours of all tube feeds.

I remember crying after being told of London’s lack of progress and of a new battery of tests to be performed on her in the coming days. My chair was backed up against the window in London’s pod and I numbly stared out into the rest of the NICU as Megan explained what the next steps were going to be. Kate held London. I let the tears drop out of my eyes without blinking. I was in a dark, sad place, and so surprised that we were still in the NICU with no set discharge date.

So much can change in a year. As today’s afternoon thunderstorm rolls across Denver, I am reminded of the first couple of weeks London was home. There were storms every afternoon, including several tornado warnings. London would fall asleep in the middle of the living room while hailstones hit the windows. I’d try to fall asleep wherever I could too, but couldn’t pull it off quite like London. Kate and I lost massive amounts of sleep all over again for the same baby, but we eventually found our groove. And London did too. She’s right where she should be for a one-year old.

Happy Birthday again, London!

London’s First Cry

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London was on a ventilator for the first three weeks of her life. This meant that we didn’t hear a peep from her all that time. We could see from time to time that she was crying, but there was no noise to accompany the cry. It looked so odd, different than any other baby cry I have ever seen. Finally, when London promptly freed herself of the ventilator we could hear her cry. This time it was unlike any baby cry I had ever heard. Intubation can damage the vocal cords of preemies. The damage, in London’s case, was only temporary, but for a while her cry sounded like this. I described it to someone as sounding like a goat. It’s heart-wrenching to hear, then and now, because I just want to pick her up, cuddle, and rock her, but back then that was never an option. And now that it is, London doesn’t cry. Decent trade off.

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.

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.”

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.

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.

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.

36 Weeker ≠ 26 Weeker

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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.

The Redefining

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I wanted to share something short today.

At some point during London’s NICU stay I was shuffling through some words in my head. The words were not new words to me, but rather old ones with new, real-life experience meaning.

Selfless.

Difficult.

Scary.

Challenging.

Beautiful.

Enduring.

Love.

The meaning of these words most often change with a full-term baby, but when you have a super early preemie almost no word or perspective is left unchanged. The story of London’s birth is many things to us, but to boil it down to a few sentences is this…

A shift of everything into high gear and high limits. Your life and your cares as you knew them were wiped away in an instant. It is the redefining moment of your lives. What you thought would break you passed and you emerged from it whole.

Remade.

And redefined.

Free Of It

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I was filling up a growler at the Bull and Bush when I received word that London no longer needed oxygen support. Tears immediately filled my eyes as I stared at the text message from Kate that delivered the news. I tried to compose myself as I signed the bill and took my growler, noticing a woman next to me at the bar. The woman’s prolonged stares told me that she knew I was trying hard not to cry.

Back in my car, I was able to share the news with my parents who were visiting us for Thanksgiving. After that I wept. I was overcome with pride in my daughter’s strength and attitude. It was the happiest cry I can remember having.

Here, on this blog, I have tried to convey to you what this journey has been like for our little family. However, there are some emotions that are so hard for me to put into words that I know I cannot give you the depth of feeling I felt at this news or that news, nor should I really expect to be able to do that because my feelings as London’s dad are obviously not going to be the same for you. Nevertheless, I wanted to try.

If you have read this blog from the start, you know just how far London has come since birth. I have reminded you enough. But her finally shedding oxygen support was a landmark event in her story, unlike any that she or heFullSizeRender-2r parents have lived through.

From January 30, 2014, we have treated London like a normal baby, sort of convincing ourselves that this is how all lives start. This is a coping mechanism and I suspect parents of babies and children with physical or mental setbacks have often treated their child as completely normal. This has served us well and I am sure it has served countless other parents well.

Now, I can only speak for myself, but no matter how much I thought of London as normal, I knew of her unique health risks and the challenges she had faced, so I never forgot that this was all quite far from normal. For all of her life up until last Tuesday, London had external, let’s call them accent pieces, on her face that clued everyone else into her prematurity or special needs. As a parent of a preemie, you get used to this, but from that first moment when you see your baby in that Isolette with tubes coming out of her mouth, nose, and belly, you yearn for the day when she can rid herself of it all, when she can be free of it.

Just shy of her ten-month birthday, that day arrived and I will remember for the rest of my life where I was when it did.

To the Internet, Not So Fast

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Back in 2007 I had a troubling sickness. It started with migraines, then it transitioned to the frightening Bell’s Palsy, and whatever I had did not stop there. I developed iritis (inflammation of the iris, which makes the whites of your eyes blood red and the photophobia can be unforgiving). I had partial hearing loss in one ear. Doctors ran me through a battery of tests. In a few months I had a CT, blood draws, many eye exams, an MRI with and without contrast, X-rays, and a flexibility test, where the doctor looked for signs of Ankylosing Spondylitis, a symptom of which can be stiffness and pain in the spine and neck.

The tests turned up nothing of concern, but the symptoms continued to give me plenty of reasons to worry. In between visits to the doctor I would sometimes have a lapse of judgment during which I logged onto the internet and did some self-diagnosing. What I found was terrifying. There was an encyclopedia of diseases and unheard of (to me) maladies that could, in theory, give me some of the symptoms I had. Brain tumors. Cancers. Crohn’s disease. Thinking about it all scared me. The doctors, I knew, were doing their best to give me an answer. For a time, I thought that their lack of explanation was a bad sign. When I was firmly convinced of this I went to the internet. Ultimately, what I found led to prolonged worry and who knows, maybe some of the symptoms would have gone away sooner if I was not giving them their unwarranted attention.

By 2008, all of my aches, pains, and inflammation were gone. Most likely a virus had attacked me and, my body, with some hiccups along the way, crushed it. However, if any of the symptoms had returned in the seven years since I would not have consulted the internet. I would have gone to a doctor.

To have this lesson in my back pocket heading into London’s bumpy start to life was an unexpected blessing. London’s actual and possible complications from prematurity were a tsunami of information compared to my sickness years ago. The first wave of preemie particulars and statistics hit even before London was born. While I was waiting outside the operating room a doctor came by and ran down a random list of possible complications. She told me 26-weekers have an 85% survival rate. This brief conversation introducing me to the challenges preemies face was similar to seeing the tip of an iceberg above water. The other 90% was below the surface, or in our case, through the OR’s double doors and on into the NICU. To borrow from The Lord of the Rings, it was “the deep breath before the plunge.”

*          *          *

Upon your family’s arrival in the NICU, you might feel like you’re drowning. There are more people taking care of your baby than you can keep track of. There is a new procedure every day. Thus, there are results every day, results that must be explained to you, sometimes three or four times. In addition to that, there are a lot of unknowns and, regardless of how talented the NICU staff may be, no one can accurately foresee the obstacles ahead for your baby. The internet is not going to be any different. There, you will find many question marks and new and more dangerous preemie complications to worry about, even if your baby is not suffering from them.

As parents with a baby in the NICU, Kate and I felt like there needed to be a sacred part of the day, during which we would try to not worry about the next results from London’s latest blood draw or echocardiogram. Of course, to not worry is impossible. It is more accurate to say we carved out time in each day during which we would purposefully not heighten our worry. This time became essential to getting us through every month our daughter was in the NICU.

Seeking information or support online seemed to only disrupt any sense of peace and hope we had regarding London’s course of treatment. If it was information we sought, then it was to go down the rabbit hole again, entering a world where one complication, like a brain hemorrhage, could lead to hydrocephalus and, almost certainly, cognitive disabilities. At least, that is what the internet would like you to believe at times. And if it was support we queried, we discovered far more troubling accounts than our own, which led to more worry.

Very early on in our NICU adventure we discovered the very poor predictive quality of the internet. Thus, the net never became a source of information for us. We much preferred getting answers straight from the trained professionals who were taking care of our daughter.

I have used the internet for queries about preemies many more times since starting this blog than I did while my daughter was in the NICU. When I am using the internet to find a definition of a certain malady, it can be helpful and I am grateful for that, but the internet will remain a horrible diagnostician and a font of worry for parents with a baby in the NICU.