Did it go by fast?

Did it go by fast?

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

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

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

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

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

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

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

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

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

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

No, it did not go by fast.

Free Of It

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.

Pictures: Leaving the NICU

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

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

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

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

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

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

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

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

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

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

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Home. The adventure begins anew.

World Prematurity Day

Right before falling asleep last night I was scanning Twitter and I learned that yesterday was World Prematurity Day. The March of Dimes Twitter account, which I follow, had shared images of city landmarks all across the world that were lit up purple, the color of support for preemies.

I don’t know how I missed this day, but today I read some articles about prematurity and found this one on NPR, the most interesting. Money quote:

Premature birth is now the single largest cause of death among babies and young children. Every year, 1.09 million children under age 5 die due to health complications that stem from being born before week 37 of pregnancy (a 40-week pregnancy is considered full-term).

I recommend reading  the whole article at NPR. It’s quite short. The editorial, titled “Preterm Birth: Now the Leading Cause of Child Death Worldwide,” mentioned in the NPR piece can be found here.

After reading the article and seeing the picture at the top of the NPR page, I am, again, so thankful for the treatment available to us here in Denver and that we were not traveling when London suddenly decided she wanted out.

Praise for Noradrenaline

A few nights ago London, who started sleeping through the night months ago, woke up at 2 am. Admittedly, I was a bit angry at first. Aren’t we over this part? The answer most nights is yes, but that did not make it any easier to get up and feed her.

After I put London back in her crib, turned the oxygen back on, put her nasal cannula in, and compulsively checked the flow of oxygen, I asked Kate, “How did we function that first month after London was born when we would both get up every three hours back when you were pumping breast milk?”

“We were in survival mode,” Kate answered.

I guess I hadn’t really thought of it that way. Survival mode is a term I think of in a similar way as I used to think about PTSD. I just thought it applied to different situations from ours, even though what we went through is the most intense situation of my life.

Survival mode is exactly what enabled us to carry on. It turns out, we owe Noradrenaline (norepinephrine) a big thanks.

Noradrenaline produces wide ranging effects on many areas of the body and is often referred to as a ‘fight or flight’ chemical, as it is responsible for the body’s reaction to stressful situations.

For a time we were able to survive on a few hours of uninterrupted sleep each night. If you asked me to do that right now, I would collapse midday.

Survival mode played a role in my curious ability during London’s NICU stay to forget about meals, mostly breakfast and lunch, if it was a particularly busy and stressful day at the hospital. Nowadays, I don’t forget about meals.

So, thanks noradrenaline for making the impossible possible. I will say, it would be nice to have higher concentrations of you around on those days I wish I could get by with just three hours of sleep, but I will forgive you for calming down and going away until I need you next.

To the Internet, Not So Fast

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.”

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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.

Have A Preemie, It’s Such A Deal

I am here to be honest with you. Having a preemie is such a deal both in cost and effort. Think of all the deals you have come across in your life. Think of the deals you expect to encounter in the future. Let your imagination run wild. I really doubt the deal you have in mind will come even close to being as good a deal as I am about to share with you.

1. Delivery is really fast. You don’t even have time to anticipate it. One night, you’ll be at home watching TV (in our case, I was trying to watch the latest episode of True Detective on HBO), and you will be truly concerned about everyday tasks, leaning over to your spouse and saying, “Oh gosh, we still have to clean the kitchen.” Then the pain will come. You’ll make a smart decision to go to the hospital to get some drugs or something and be sent home. So, still, having a baby won’t even be on your radar. But then the water breaks and well, you know something is going to happen. You’re not quite sure what. And then a few hours later you have a kid. Very little pain. Lots of drugs. A lot of very nice people working to help you deliver this baby as quickly and as painlessly as possible. And it is. The scar will heal up very nicely.

2. No third trimester. “Wow, killer deal!” You might say. Well, you are spot on. From what I hear, that third trimester is just a pain in the ass, or more like the lower back. Fatigue? Ha, you won’t even get to the worst of it. Frequent urination? You’re safe. A two pound baby does not make you urinate more. Heartburn? Okay, you might still get this if you have a preemie, but it’s not what you think. It’s just because you had tacos with the hot salsa on them, not because you are growing a human being. Swelling? Nope. You’ll be able to wear your wedding ring right up to delivery. Weight gain? Are you freaking kidding me? As soon as you develop the slightest baby bump you’ll be hours away from delivery, saved from the expand-a-pants, saved from the waddle, the stretch marks, and the need to have a whole different wardrobe for that third trimester.

3. Best babysitting in the world. As soon as your baby arrives, NICU nurses, will be with your baby 24/7 until the baby leaves the NICU. The earlier the baby, the more days you’ll get this amazing babysitting at a relatively low cost. You can still go out for dinner. You can go home to sleep. In addition to the nurses there are many other professionals checking in on your baby, making sure she is comfortable and developing as expected. You might be a little stressed about leaving your baby in the NICU at first, but, oddly, you get used to it. You still need to enjoy your free time before you have a baby at home. You weren’t expecting to have a baby this soon. You had three more months. Take them. The NICU team has you covered.

4. The lighter your baby the better. Truly, if you have a really small baby, you just qualified for all sorts of assistance regardless of your income. You will learn about supplemental security income. You’ll get a check from the Feds once a month that has to be used on baby things. Easy enough. And then for some reason you’ll get a little bonus check when your baby leaves the hospital. Sort of like the Feds just saying, “Hey, congratulations! And thanks for paying all your taxes all those years. This is how we roll. We actually do some good stuff with the money you give us. Here’s some back.” Then, if you’re lucky enough to live in Colorado, your little, teeny, tiny baby qualifies for at home physical therapy and occupational therapy visits. Three times a month, they come to you, assess your baby, tell you what the baby needs to do better, tell you where the baby might be a little ahead, and, this is all at no extra cost to you. This time it is like the state saying, “Thanks for paying your taxes. You struck gold with this little girl and now we are going to pay people to help you with her development.”

5. People give in emergencies. The more traumatic the experience, the more people you will hear from, the more flowers you will receive, the more food will show up at your doorstep, the more aid in your mailbox, the more touching notes you will receive from people you’ve met once or have never met before, the more baby clothes you will receive, and the more diaper cakes you’ll be gifted. People will feel for you. They’ll fork over some really excellent gifts and meals. Truly, what a steal.

6. Having a preemie could very well be cheaper than having a full-term baby. When you have a preemie, she needs a place to stay. These places are called neonatal intensive care units or NICUs. A night at our NICU costs as much as the Peninsula Suite at the Peninsula, Chicago, or almost $9,000 a night. Multiplied by 109. No one is going to stick you with that bill. Trust me. In fact, when your bill arrives you could end up paying less than 1% of your total stay. I mean, if you have very solid insurance, you might just pay .007% of your total hospital bill. Double-O-Seven.

7. After hours visiting at the hospital. You know, typically when you show up at our hospital after 8 you have to sign in and say who you are going to visit. They give you a sticker that you immediately throw in the trash. What a waste. It’s a real hassle. You don’t want to stop and talk with anyone, you’re going to see your baby for crying out loud. Worry not. You’ll live at the hospital. After you’re stopped once or twice, you’ll just look over at the security desk when you next enter the hospital after hours and you’ll get in with the head nod you always see guys giving each other.

8. You get to write about it and people will read. And maybe, after you’ve gone through all this and cried a thousand times for your child’s life and watched her vital signs plummet to numbers that you just associate with death, you’ll be able to find some humor in the whole experience and put a spin on it like I just did.

Double Takes and Long Stares

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On the day we left the NICU for good.

The day after London came home from the NICU we took her on a brief outing, a trip to Target. We were both quite scared. I had hand sanitizer in my pocket, in the diaper bag, and probably in the stroller. As most new parents move about, we were slow, paranoid about every baby carrying tool properly snapping into place, and just a little hesitant about our ability to accomplish an errand with London in tow.

I was scared most by the threat of germs. For over 100 days every single person who came to see London had washed their hands twice, even if they weren’t necessarily touching her. Taking her into a Target, where a nutter could potentially walk up to London and touch her foot freaked me out. Even the idea of her breathing the air in a Target sort of worried me. I know, that’s ridiculous, but that’s the stuff we thought about back then and we prepared for it.

What I did not prepare myself for were the looks we were going to get from people who glanced at our baby. To put it more accurately, the looks our baby would get, the long stares and the double and triple takes. When you take a baby out in public people are inclined to look at him or her. What they do not really expect to see are tender grip cheek stickers holding a nasal cannula in place and an NG tube, held down by an orange strip of tape and wrinkly patches of tegaderm, snaking its way across the baby’s face.

I can still see the first person inside Target who saw all that on London’s face. A nice looking man who was clearly caught off guard by all those sticky accessories. He did a double take and by his second look at London I could see it in his face, he did not have a clue what any of that stuff was. He could very well have thought London’s situation was more serious than it really was. A part of me wanted to stop everything and explain to him what every little tube and piece of tape was doing and that London was a very strong little girl who had been through more scary days than many people my age have endured.

But I could not take the time to tell that man about all that stuff and all those scary days. It would feel like we were back in the NICU explaining to visitors what all the machines around London were doing and why she needed them. It would be an exhaustive way to transition into a life at home with London. So, I just nodded and smiled at the man and kept on walking, his inquisitive stare following us around the store. I had then such an instantaneous and deep appreciation for parents whose kids will never shed their special medical tools and/or physical and mental challenges. We were, for the moment, living that.

But after 109 days in the NICU, I also knew that we had an insanely determined little baby on our hands and, with time, people were going to lean over the stroller and see nothing that might hint at this little girl’s history, enough to fill a book, and that is what has brought a smile to my face every double take since.

Do you remember the show Rescue 911?

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Windy and Rachel on their last night shift with London before she leaves the NICU.

When I was much younger I watched the show Rescue 911. Hosted by William Shatner, the show reenacted real-life emergencies and spliced in interviews from people who were present when the aforementioned emergencies occurred. At the end of the reenactments, the rescuers who saved the individual/s in need of help, were reunited with the people they saved.

The reenactments are so bad they are painful to watch. It was easy to find some old episodes of the show on YouTube. There is even a story about a baby being born “nearly three months early” while on a flight. He weighed in at 4 lbs, 6 oz. (I have to interject here, if the baby was really almost three months early, that’s a huge kid for that gestational age). Here’s the link to the story about the premature birth on the flight. As you might guess, the reenactment is hilariously bad.

What got me thinking about Rescue 911 was seeing some of London’s nurses the other week. I got home and two of her primaries were visiting Kate and London, eating pizza Kate made, and sipping wine. I got a chance to visit with the nurses a little bit before they left and during that time I thought of the reunions at the end of Rescue 911. I always enjoyed these scenes, loving the idea of being able to see and possibly become friends with the people responsible for saving my life or, in this case, my daughter’s life. And now, that was happening right there in my kitchen.

I would never wish what Kate and I went through with London upon anyone. But if it is to happen, this is the happiest ending one could possibly hope for. We were incredibly blessed to have such caring NICU nurses. And now those nurses have become friends. I hope that as long as we are in Denver and as long as they are working nearby, the reunions continue because, for us, they are heroines.

PTSD from the NICU

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Another day down, but one last peek at London before we leave for the night.

When someone first suggested that I am suffering from Post-Traumatic Stress Disorder (PTSD) I stifled my disagreement and listened, doubtfully, to their explanation. A few minutes later, when they were done speaking, I was nearly in agreement with them.

Prior to this conversation, having PTSD was not something I thought I could get. Naively, I associated PTSD with war veterans and not many other people. But this is so wrong. The National Institute of Mental Health (NIMH) defines PTSD this way:

When in danger, it’s natural to feel afraid. This fear triggers many split-second changes in the body to prepare to defend against the danger or to avoid it. This “fight-or-flight” response is a healthy reaction meant to protect a person from harm. But in post-traumatic stress disorder (PTSD), this reaction is changed or damaged. People who have PTSD may feel stressed or frightened even when they’re no longer in danger.

PTSD develops after a terrifying ordeal that involved physical harm or the threat of physical harm. The person who develops PTSD may have been the one who was harmed, the harm may have happened to a loved one, or the person may have witnessed a harmful event that happened to loved ones or strangers.

Kate and I were afraid for months while London was in the NICU. We did not always realize it, but we were preparing ourselves for the worst outcomes in the NICU in an attempt to defend against them. Now that London is out, far removed from those most terrifying days, we still occasionally feel frightened and on edge. I first noticed a change when I was performing simple tasks, like preparing some milk for London. On a few occasions I spilled some of that milk and instantly my temper flared. And if anyone was around, I was mean to them. When I am like this I do not want to be near anyone. I was not crying over spilled milk. I was inconsolable over spilled milk. I was not sad. I was irate that something did not go my way. Everything sucked. I consider myself to be a patient person, so this new feeling of anger over something so unimportant was troubling. In fact, that realization made everything worse, bringing a snowball effect to my PTSD.

In addition to losing my temper, I can be anywhere doing anything and if I slip up and think about the scariest moments in the NICU or in the OR the night of London’s birth I am fighting back tears. These are not voluntary recalls. I do not want to think about the scary moments, but the trauma of London’s start is prolonged and fresh in my mind. To think back is to invite some of those moments into the present and once you do that it is hard to stop the flow.

The NIMH definition of PTSD continues:

PTSD was first brought to public attention in relation to war veterans, but it can result from a variety of traumatic incidents, such as mugging, rape, torture, being kidnapped or held captive, child abuse, car accidents, train wrecks, plane crashes, bombings, or natural disasters such as floods or earthquakes.

Or as someone recently put it, “You were not just in a single life-threatening accident with London. You were in one week after week after week and the person most precious to you in this world was the one always at the greatest risk.”

Truer words have not been shared with me. Having a baby at 26 weeks is exactly like that. Every time we drove to the hospital we braced ourselves for the accident. For a while, we got bad news every day. Sometimes it was just a trickle. And on the worst days it was a flood.

Even when the bad news did not come, we still braced for it. Do that day after day for 109 days and PTSD becomes a near certainty. For almost four months Kate and I did not just daydream about worst-case scenarios. On top of the worries every parent has concerning their newborn baby, we had to have real, hard discussions about our variety of worries stemming solely from London’s delicate start to life. At the end of most of these discussions one or both of us were crying and holding onto each other.

Until your child comes home from the NICU you live at a heightened state of anxiety. It becomes your new normal and when you plateau for that long coming down can do some really weird things to you. We are still adjusting.

The Fastest Year of My Life

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Taking in the sunrise from our room in Mexico.

Last year, Kate and I were in Playa del Carmen for a wedding during the first weekend in November. I was thinking of this trip just last week and I momentarily refused to believe it had almost been a year since Kate and I strolled along on the beach during a midday thunderstorm. That walk and the rest of that trip are so vivid and crisp in my mind, we could have been there last month. How could those memories be a year old?

Less than two weeks after we returned from Mexico we went under contract on our first home. The next 12 days I was busy with the purchase of the home and making sure we could move out of our apartment before the lease ended. Then we were off to Wyoming for Thanksgiving. Then we drove back. A few days later we flew to Orlando for a week. Then it was a week of last minute Christmas gatherings and preparations before we traveled to New Mexico. There for nearly a week, we drove back and closed on our house that Monday, December 30th. I started painting throughout the house that afternoon. We moved furniture on January 7th. The house was a mess and there was still more painting left to do. We then had a relatively calm three weeks (as calm and restful as settling into your first house can be).

Then the night of January 29th arrived and Kate had painful contractions at 26 weeks. The next significant date in my head is May 19th, the day London came home. And then a summer spent on edge as London slowly strengthened and we traveled to weddings. And then fall arrived. And now we’re almost back where we started.

From January 29th to May 19th, it did not matter what day of the week it was. It did not matter the month, the holiday, the weather, the time. It only mattered that London was doing okay and getting better. These days are curiously recalled in my mind. There is so much held within the borders of them that it will take years to process just how much we changed during that time and how it affected us. Yet, at times, those days seem like one really long fast day. And then it was summer and our girl was home. I recall pausing during my walk out of the hospital one day in April to take in the weather. “My God, it’s spring,” I mumbled to myself. Where had winter gone? I was actually dumbfounded. I can easily remember the cold night we arrived. That was the last day I cared about the weather.

Living on edge makes life go by very quickly. That is one thing I have learned in the last year.

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May 23, 2014. 4th day home.

London is home now. She is strong and happy beyond our wildest hopes and expectations. I do not call her a miracle baby because I never want “miracle” to be a term I casually use. But it is true. She is a miracle. And she is not the only miracle of the last year. It is a miracle all three of us made it through. At times it did not seem possible. It did not seem possible that time would slow. But it did. And I care about the weather once more.

If You’re Just Now Getting Here

I probably should have done this sooner, but if you’re just now finding this blog via a tweet, Facebook share, or web search, then you should know that it all started with a series of posts detailing London’s birth. These posts are the foundation of this blog and, for their author, the hardest to write and the hardest to reread.

Feel free to scroll down through the archives, but if you’re looking for square one, and for getting a better feeling of how this family got its start, follow the links below. A quick word about the original posts, there are thirteen of them, but they aren’t very long posts so reading all parts is not a big ask.

London’s Birth Part I. 

Part II.

Part III.

Part IV.

Part V.

Part VI.

Part VII.

Part VIII. 

Part IX.

Part X.

Part XI.

Part XII.

Part XIII.

The NICU Is A Fortress

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One of my favorites. Her 2-month birthday. “To infinity and beyond.”

As badly as I wanted London to leave the NICU I was also terrified of some of the things she would lose when we walked out of that hospital. 24/7 caretakers. A team of RNs, NPs, and MDs just feet away. The opportunity to talk to one of them whenever we wanted to and to ask the dumbest questions of.

As a parent, you do grow accustomed to having your baby in the hospital 24/7. It is comforting to know that your child has the best babysitters in the world.

While London was still in the hospital I wrote:

Right now I feel like taking her home will be bittersweet. I’ll be beside myself, in a good way, when we walk into our house holding London, but it’ll also be frightening to leave our NICU family.

Back then, the approaching discharge date meant exposing an already fragile baby to the terrors of this world like driving home with her! Or contact with the public, those creepy baby oglers who think they have the right to walk up and touch your child just because she is the cutest thing they have ever seen. Can’t stand these people! We would be responsible for a baby, yes, but also all the leashes that come with her: NG tube connected to a feeding pump, an oxygen cord, and a pulse ox connected to her foot. Monitoring all that could be overwhelming on top of normal baby duties.

But a baby has to leave the NICU eventually. We had our gambles and triumphs there in that pod, but the good stuff was to be found in life beyond those hospital walls. It is hard to think of leaving the NICU as anything but a tradeoff. An adventure was before us, filled with successes and failures, loss and gain, losses and victories. But behind us was London’s NICU pod, which, for her parents, became the safest place in the world.

8 Memories for 8 Months

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

Before:

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

After:

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

Onward.

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

Month 1

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

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

Month 2

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

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

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

Month 4

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

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

Month 5

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

Month 6

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

Month 7

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

Month 8

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

 

Busy, Writing, and Travel

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Taken the weekend of our first overnight trip with London.

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

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

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

NICU Bragging

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

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

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My girls.

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

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

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

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

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

“Oh, was he a preemie?”

“Oh yeah, 28 weeks.”

“What’s that, 3 months early?”

“Two and a half.”

“Ours was 3 months early.”

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

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

Baby Kale

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

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

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

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

Born in the USA, Raised in the NICU

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

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

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

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

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

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

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

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

The Eyes Have It

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

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

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

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

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

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

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

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

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

More Baby Time

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DOL 2: Eyes still fused shut.

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

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

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