Month: August 2014

Not Fun, Placing an NG Tube

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Before our NICU discharge, Kate and I both learned how to insert a nas0-gastric (NG) tube into London. NG tubes are necessary when the baby cannot drink enough milk to thrive. When London was discharged, she was only nippling 25% of her daily volume. The rest was pumped through the NG tube.

We needed to learn how to place it because NG tubes can be easily pulled out by the baby. During her NICU stay, London pulled her tube out several times. So, we had seen it put back in place by the nurses. A nursing student did it one day while we were there watching. I would have been extremely nervous if I had been in her shoes with the parents hovering over me, but she did extremely well, threading the tube up one of London’s nostrils and down, down, down to the stomach.

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At home, with that darned tube snaking out of her and all that orange tape on her face.

When it was time for Kate to practice on London they both did pretty well. When the tube first reached London’s nostril Kate stopped because she was already crying. Nurse Megan and I comforted her and told her she could do this. Kate composed herself and went for it, making it look easy, even though inserting an NG tube in your baby is really one of the worst tasks you can have as a parent of a newborn.

I tried the next day and, again, things went pretty well. Of course, by the time I was finishing up with the tube, London was bawling her eyes out, but regardless of who does this to her and how they do it, by the end, London was always screaming. I suspect most babies respond this way. Luckily, London was always easy to calm down afterward.

The success we had placing the NG tube while London was in the NICU did not follow us home. You can nearly cover your baby’s face with tape trying to hold that NG tube in place and attempting to make it impossible for the baby to get a finger around it and pull, but eventually, that thing is coming out. The first time this happened to us it was already late at night. We were so disappointed we had to do this to London. We let her calm down as we readied a new NG tube, tape, and a little sugar water to distract London from the pain. Kate tried first and I held London down on the bed. Things seemed to be going okay until the tube was a couple inches in and it wasn’t going anywhere. London was awake and bearing down so the tube had nowhere to go. It is agonizing to be in this position. We didn’t know if the tube was going somewhere it wasn’t supposed to be going. We didn’t know if we should push with more force. Meanwhile, London sounded like someone was torturing her.

We regrouped before I tried to place the tube. No luck. Same thing happened. London was bearing down and the tube wasn’t going anywhere. We abandoned that attempt. I was distraught, grabbing a pillow and screaming into it because I just couldn’t stand inflicting that much pain on London, twice, and without any reward.

After an hour of talking about our alternatives (try again in the morning or text one of London’s night nurses to see if they can place the tube if we go to the NICU) we decided it would be best to just go to the NICU. London’s nurses had offered to do this before we left. If we had any problems, let them know, come on by, and they will put in the NG tube.

We arrived at midnight and Windy had set up a little operating room in the NICU’s conference room. She placed the tube like it was no big deal and I tried to pay very close attention to how it worked so well in order to avoid doing this again.

A week or two later, London had pulled the tube again. I tried to recall the night at the NICU and I watched a couple of how-to videos on YouTube. The keys to doing this properly, at least on a baby, seemed to be sleepiness and speed. Don’t try this when your baby is wide awake because they are able to quickly bear down and stop the NG tube from going in. Don’t be slow about it either. By the time your baby figures out what is going on, you want the tube to already be in their stomach or damn near close.

I volunteered for the mission. Kate held London’s arms. Then we paused. We said a little prayer over London, attempting to calm ourselves before we do this again, praying that it would not be a repeat of last time. We finished praying. We took some deep breaths and then I plunged the tip of that NG tube into one of London’s nostrils and it curved downward and kept tunneling its way right down to London’s stomach. What a huge relief it was for all three of us to have that done. In this case though, I think Kate and I were the most relieved. No trip to the NICU tonight, baby.

We did not have to place the NG tube again. A little over a week later we pulled the NG tube ourselves because London was due for a photo shoot. That day she took all her milk by bottle. She looked and still does look amazing without that tube coming out of her nose and all that tape on her face. When I look at pictures from the NG days, I cannot get over how crowded her face looks. We are so happy to have put that phase behind us.

The Museum of London

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I have a sneaky suspicion that throughout her life London will be the recipient of a few gifts with a British theme to them. If we were going to easily tire of this, we wouldn’t have named our daughter London. Those gifts started arriving right away, one of them directly from London itself. A friend of ours was in the UK when London was born and brought back a gift from the Museum of London. When I saw the bag the gift came in I knew exactly where I was going to place it…on one of the walls of London’s pod. There it stayed for 109 days. As the weeks and months passed, there were more signs on the walls in London’s pod. Of course we have them all now at home, but I took pictures of all of them before we cleaned out London’s NICU pod. Here they are…

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London’s first footprints with her birthweight. There’s no perspective here, but those feet are the size of my thumb. Oh, and all these signs were made by the nurses. That is something I never expected about our NICU stay, to have on-demand artists to create signs commemorating London’s growth and month birthdays and even holidays.

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London’s first holiday was Valentine’s Day. We brought cards in for her. I bought a card for mom from London. Just looking at the card from London made mom cry. Forget about reading it.

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Born on January 30th, we just had to select a day at the end of February to be London’s one-month birthday. We took handprints and footprints that day and a family picture. London’s hands that day were about the size of my thumb.

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By March 8, London was 6 lbs 1oz shy of my birthweight.

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These footprints, although small, looked like Bigfoot had made them when you saw them side by side with London’s birth footprints. Unbelievable. Also, had London gone full term, we were told her birthweight would have been around 9 lbs 2 oz, the weight on her three-month birthday.

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Lastly, one more sign made just in time for London’s discharge day from the NICU. She gained 9 lbs in the NICU and grew 6 inches. By her fourth month there, London could have eaten some of her NICU neighbors for dinner. She was the Queen Bee, unrelenting in her cuteness and exponential growth chart.

Summa cum laude. 

We’re Ready

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About two weeks before London was born, I was talking with a mom of two kids and telling her about the baby girl that we planned on welcoming into the world on May 4th (or sometime around then). When I finished up sharing my exciting news, she had a question for me, “Are you ready?”

“Yeah, I’m ready,” I said.

“No. No, you’re not,” she replied.

For some reason this exchange, between the parent who is in the thick of it and the expectant parent, is commonplace. And, I would be willing to bet that expectant fathers get this response more than expectant mothers do, but I am not bothered by that. I am bothered by the response, “No. No, you’re not.”

Obviously, I recognize that this response is, in part, a weak attempt at humor. What appreciation I have for that humor though is wiped away by the response’s other message, one that seems to imply that my wife and I, one, did not know what we were doing when we decided to make a baby and, two, that prior to that decision, we did not think about what we were getting into or taking on.

Of course, no one knows for sure what they are getting into when they decide to start a family. We certainly did not know that five months to the day that we found out we were expectant parents our little girl would arrive. We did not know that London’s prematurity meant that I had to stay at home with her. We did not know of how deeply we would love our child. We could not have imagined our lives changing so much in the span of six hours on the night of January 29th.

But we did know something before London was even a whisper. We knew that if we moved forward with our desire to start a family we were embracing the unknown in a way we never had before. Within that unknown, there sure was the possibility of having a preemie. There was the possibility of a miscarriage. Really, the possibilities are endless and that is a frightening thought, especially when you become a parent.

For the chance to love someone more than ourselves; for the opportunity to have our hearts leave us and become a little human being, these are joys that trump the unknown.

For that mom who said, “No. No, you’re not,” who knows what surprises and challenges came her way in parenthood, but, she must know, and so must other parents who tell expectant parents that they are not ready, that, indeed, some of us are.

Losing Anticipation

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I touched on this topic a while back in “Life Goes On, But Something Was Lost,” but I wanted to write about it a little more.

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A getaway to Voodoo Doughnuts…we did bring some back to the NICU for the nurses.

When you have a baby in the NICU long-term, it takes a while to establish a routine. At first, you’re there all the time, until life elsewhere completely falls apart. By life elsewhere falling apart, I mean there will be no food in the fridge when you come home from the hospital, you’re out of toilet paper, you’ve forgot to pay bills, and you forget how to have fun, or, at the very least, you feel guilty for having fun or for merely being busy with something else other than sitting in the hospital with your baby.

The NICU nurses tell you right away that you can’t be at the hospital all the time. You’ll go mad if you do. As weird as it feels, you need to go out for dinner, go see a movie, and spend some time at home just relaxing. In our case, it was spending time at the house making it feel more like a home…we had moved in two weeks before London arrived.

At the NICU, I got the impression that some parents didn’t heed the nurses’ advice and spent every waking minute at the NICU. And when their baby was ready to come home, they were already exhausted. Eventually, we did take the nurses’ advice. Spending time away from the hospital did keep us sane, but it also allowed us to gain back some of that time we feel we had lost, the time we would have spent anticipating the arrival of our first baby. We had a lot of that time left, 14 weeks perhaps, and then it vanished the night London was born.

As a couple, spending time together away from the hospital was essential to our ability to get through the challenges that London faced. Before she was born, I had made Valentine’s Day reservations at a place downtown we had been wanting to go to for a while. When London arrived, I assumed I’d be canceling that reservation. It seemed like everything was off the table for weeks. Thankfully, I was wrong.

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My sister and I, post-brunch and many mimosas, getting ice cream at Little Man.

We could have gone 109 days without a night out, a Sunday brunch at Cafe Bar, a trip to Little Man Ice Cream. Kate could have gone without a baby shower…or three (with pictures of actual baby present). I could have gone without a couple trips to the Bull and Bush (“The pub you’ve been practicing for.” God bless them). We could have passed on going to church Easter morning. But if we had not done all these things, we would have completely lost those 14 weeks to the NICU.

The NICU is a beast. You don’t want to give her more time than you already have to. Of course, don’t take this too far. One nurse told us about a couple who had been told that their baby was going to be discharged on Friday of that week and they objected because they were going to Vegas that weekend. There’s a sweet spot you can find. I think we eventually found it. Our hearts never left the NICU, but our minds and bodies knew they had to leave that place every once in while to keep going.

28 Weeks, Not Too Early to Start Reading

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Reading In the Night Kitchen, one of my favorites.

Posted near the hand-washing station at the NICU entrance is a sign promoting the NICU library. By the looks of it, they have all the classics: Goodnight Moon, The Very Hungry Caterpillar, and Guess How Much I Love You. However, even though I looked forward to reading to my kids, I was a bit skeptical about reading to a baby who weighs four pounds and is on bubble CPAP. How could I even concentrate enough on a kid’s book? How could she hear me over the noises of the NICU?

The skepticism did not last long. After so many hours next to the isolette I had to do something to keep my sanity. Kate and I started reading to London while she was still vented, pre-30 weeks gestational age. Too early? Yeah, but we sensed a theme with London, she wants to do everything early. Why not oblige her? Plus, reading is a love of mine and I want it to be for my daughter too.

We started with a book of Disney short stories. I introduced In the Night Kitchen, An Awesome Book (by Dallas Clayton, one of my favorites), and On the Night You Were Born. London not only was calm while I read to her, she satted high too. Her eyes would wander around, trying to find my voice. I was hooked.

But what do you do when you’ve read every kids book you own several times already? Easy, you start over if your kid is old enough to make requests. But London couldn’t so I moved on to magazines and novels. The New Yorker…why not? I started reading from The New Yorker app on my phone, but then began bringing the magazines into the NICU. The subject of the piece did not matter to London. As long as she heard my voice and could watch my mouth move and see my face we were making progress. I read about the origins of house music in Berlin clubs, Amazon’s effect on the publishing industry, and the start of Under Armour. Sometimes I had to whisper the words to her because they weren’t exactly NICU-appropriate.

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Introducing London to Middle Earth in the NICU. The Hobbit. Read April 21-May 7.

Done with the magazines, a novel was next. Having seen the second of The Hobbit movies just a week before London arrived, and not having read the book since my freshman year of college, I had a strong desire to read the book again. I read this one from my iPad. I would shut the curtain to London’s pod for a little privacy, pick her up from the isolette, sit down in the recliner, rest her on one half of the pillow and the iPad on the other, and start reading. We finished The Hobbit in two weeks, every word of it read out loud to London as she drifted in and out of sleep on the pillow in front of me. We finished on May 7. By May 12, I had selected the next book, Harry Potter and the Sorcerer’s Stone, which meant I was committing London to a lot of listening and, for me, a lot of reading, because you can’t just read one book in a series. Well, you can, when the series sucks, but I didn’t expect that to be the case with Harry Potter. I had never read more than ten pages of a Harry Potter book. Now we are 250 pages into the third book.

I guess all the previous paragraphs represent my attempt at telling you it is never too early to read to your kid. It is hugely beneficial. Even before London was “full-term” she knew my reading voice from my regular voice. Realizing this could not have encouraged me more. She even smiled in response to the sound and rhythm of the words when she knew I was reading to her. She still does. Sometimes she flails around on the floor in pure excitement at the sound of the words and the sight of the book. And at other times she rests in the mamaRoo, so intensely focused on the movement of my mouth that I can see the learning in her eyes. And when she falls asleep I stop at the end of the page so, together, we won’t miss a word.

Be A Man, Change A Diaper

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The first time I was present for London’s cares in the NICU, I made what was, for me, a radical decision. Instead of standing off to the side and becoming a spectator to my daughter’s care, I joined in and did as much as possible. So often I choose to spectate, deliberately choosing to not try something new and scary. However, when faced with the prospect of handling my two-pound daughter, I didn’t even think twice. I said I would go for it even though I could hardly believe the words that were coming out of my mouth.

All I had to do was take her temperature and change her diaper. That very first time, it was really difficult to do either of those tasks. I needed some coaching but got through it. London’s nurses that morning, Megan and Laura, were excellent teachers and perfectly understood that I was in a fragile state myself. Afterward, I certainly didn’t feel like a pro or anything, but I had this minuscule sense of accomplishment. In hindsight, choosing on the morning of London’s birth to jump right in and help with her care as much as I possibly could set the tone for the rest of our family’s time in the NICU.

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Reaching into London’s little world.

I don’t know if what I had was a very positive outlook in the NICU, but at least from that first morning on I had a tactile connection to my daughter that made things a little more bearable. I know it all started with that first diaper change. So how else could I feel when I saw a father being interviewed about his kids in the NICU and when asked if he was changing diapers he balked, giving the reporter a look that said are you crazy? The father responded: no. The reporter: why not? The reason he gave, with a chuckle: they’re too small.

I felt shock because the babies he was talking about were small, but not as small as London and preemies do come even smaller than London. I was also a little sad. I wanted to reach through the television and tell him my story, why I thought choosing right away to change a diaper on your preemie was such a good idea.

Until I saw this interview on television, maybe I didn’t realize how important my decision to change London’s diaper that first morning of her life was. I learned from my choice that I could become an active participant in this, the scariest thing I have ever gone through. It meant that I actually did get to touch my daughter and not just stare at her through thick plastic all day long. And for her, I don’t think I will ever know all the ways it helped her. I know that it helped her become familiar with my voice and touch. There were a lot of nurses taking care of London, but at least once a day the same person was taking her temperature, changing her diaper, and talking to her in his same, goofy voice.

These preemies need love and attention. As a father, you have to give that too them any way you can. It may seem like nothing at first, but if you keep loving them and helping with their care at every opportunity, they are going to get better. I remember toward the end of London’s NICU stay, the director of the entire NICU floor came over to London’s pod. He walked up to her bed and smiled at her, shaking his head in amazement. He had been an attending the week London was born so he had seen just how far she had come. “She’s made so much progress. She’s looking great!” I nodded in agreement and told him, “She’s amazing. Thank you!” He paused for a moment, “We do all that we can here, but it’s you guys that have really made the difference because you provide the love that she needs and we can’t bottle that stuff up.” We both looked down and smiled at London. He tapped the isolette, as if saying goodbye, and walked off. That love he mentioned, it took so many forms during London’s 109 days in the NICU, but maybe none more important than shedding fear and apprehension and stepping up to change that first diaper.

How’d This Happen?

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A couple of weeks after we returned from our beach vacation last summer, Kate expressed to me that she thought she was not pregnant (we had been trying for a couple of months). She was deeply saddened by this, even starting to worry about us having fertility problems. I did my best to calm her, telling her that on average it takes six months of trying after coming off the pill before the woman becomes pregnant.

Two more weeks passed. In the days before Kate’s family arrived (on August 30), Kate told me that something didn’t feel right. Hearing this from Kate, along with her smelling “horrible smells,” which I couldn’t get the faintest whiff of, I encouraged Kate to just take a pregnancy test to confirm that she wasn’t pregnant. This was on August 29th, the same day we received a box of pregnancy tests from my sister, who had officially decided her childbearing years were behind her.

On the 30th, I woke up around 6:15 in the morning. I noticed Kate wasn’t in bed, but that wasn’t unusual. I sleepily walked into the bathroom to pee and right as I started, I heard Kate’s loud footsteps. She was running toward me and yelling, “Wait! Wait!” When she got to me she shoved an empty and clean peanut butter jar straight into my stream of pee and yelled, “I need some of your pee!”

In Kate’s other had was one of the pregnancy tests from my sister. I was not quite with it yet that morning so I just thought she was seeing if they work properly, although with a level of excitement I did not expect. As my brain warmed up in those few seconds the obvious reason for her behavior came to me. She had already taken a test, it came back positive, and so she was testing the accuracy of these pregnancy tests due to their expiration 18 months ago.

My test came back negative (surprise!) and Kate explained to me that she had taken one before I woke up and it had been positive. She had her doubts though because she read only that morning about how expired tests were not be used and/or trusted. Nevertheless, we had one positive test. Kate even tested the tap water. Negative. Kate said she would try to get in for a test at work.

I spent the day doing some last minute errands and getting ready for our company to arrive, but I could not stop thinking about the possibility that Kate was pregnant. I thought about it all day until the afternoon when Kate got home and set a bag on the counter, telling me it was a card and book for Kendra (her sister) and her boyfriend. She then nervously walked straight out of the room, but added that I could look at the card and book. Flipping the book over first, I saw the title, something about the first year of fatherhood. In a daze, I looked at the card, not even reading the front, flipping it open, saw that Kate had already written in it and signed, “Kate and B.” In my current state, I still thought that it was a card for Kendra and Jake and that Kate had already signed it for us, Kate and Bryce. I didn’t even read what else she had written._BKP1683

I ran to Kate, who stood at the doorway to our room and asked, “Really?”

“Yes,” Kate said through tears and a joyous smile. I hugged her close and lifted her off the ground.

Kate said something about reading the card and I told her I hadn’t. Oops. I ran over to the kitchen and read it. “Cute as a button” graced the cover. Had I bothered taking the split second to read the card, I would have known that it was a card for us. I truly felt sad about botching her efforts to tell me. The daddy book made it pretty clear though. The rest of the afternoon we basked in the news and finalized how we were going to share it with Kate’s family.

Toward the end of our family dinner that night, I stood up and signaled to everyone that I wanted to take a group picture. Once I had all of Kate’s family in the frame Kate commenced with a countdown, “One, two, three, we’re pregnant.” I had the camera take a burst of pictures, catching everyone’s reactions. The first picture didn’t record any remarkable changes in facial expression.

_BKP1684In the next picture, my father-in-law is looking at the ground. He doesn’t look disappointed, but it does look like the weight of the news, that in nine months he would become a grandparent, is hitting him pretty good. Next, my brother-in-law, and Kate’s sisters are all looking at Kate with huge smiles. Kate’s mom is looking at Kate, still, amazingly, holding her wine glass. And in the next photo, pandemonium.

I set the camera down and joined in. Kate was making her way over to her dad to hug him. He was as happy as anyone there, but still, his first question was, “How’d this happen?”

The rest of the evening is sort of a blur. I know we discussed what we knew about the pregnancy at that point. Four and a half weeks along. Due May 4th. The next nine months were pretty clearly laid out. We thought.

The NICU’s Empty Rooms

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Not all NICU stories have happy endings. We did not know the parents in the pod opposite London’s pod. They were very young, teenagers probably. Their baby seemed to arrive in the NICU around the same time London did. For nearly two weeks we were neighbors, who at most acknowledged each other’s presence, but did not speak to each other. We were just getting into the groove of having a baby in the NICU and I was not in the mood to chat it up with strangers. In addition to that, I did not identify with this couple. It seemed like the only thing we had in common was that we both had a baby in the NICU.

As London entered her second week of life, Kate and I noticed that anyone entering the pod across the hall had to gown up. One afternoon some doctors were working on this baby. Some sort of operation. Looked serious. One can only guess what was wrong, but it did not seem like a standard procedure.

Two days later, as we joined London for the day, I took notice of the parents. They looked especially worn out as they spoke with a doctor. We overheard a bit and they were being encouraged to call their parents. I should have taken that as a sign that things were not going to end well for them, but I remained optimistic. Maybe things have just gotten a little more serious, but the baby is still doing okay. Those hopes eroded a few hours later as I returned from a coffee run and heard a fellow speaking to other staff members. A chaplain had been called and most of the family was already here.

I entered our pod and told Kate what I heard. A little time passed and then I stepped outside our pod and stood at the sink in the hallway. Kate stayed inside holding London. As I washed breast pump parts I could hear the mom and dad across the hall starting to say goodbye to their baby. My back was turned to anyone else in the hall, so I did not hold my tears in. I wept for the parents out of sadness. I wept out of fear. I wanted to finish up cleaning as quick as possible so I could go back in our pod and sit a little closer to my baby girl.

Less than an hour later the baby across the hall was moved to a private room, where the family could spend the last hours of the baby’s life in privacy. This practice seems to be as much a benefit of the family with the sick baby as it is for the other NICU families.

Another hour later, I was getting water down the hall from the NICU front desk when I saw someone walk by with a professional camera. I recognized some of the people with the photographer as family of the sick baby. I don’t know for sure if the baby was still alive at that point, but there was still time for one last family portrait.

By the time we left and walked out of London’s room, the pod across the hall had been emptied of medical equipment, mopped, and sterilized. The equipment had been cleaned and put back in the room, but draped in plastic, protected and ready for use when the next little patient arrived. The room looked inviting with its giant windows and rocking chair, like it had already forgotten the family who was in there hours earlier. I remember thinking, the secrets these rooms keep are sometimes for the best.

Leaving Her Doesn’t Get Easier

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*Originally written on April 22, 2014.

You don’t grow used to visiting her at the hospital. Some might think that happens because she’s been there for nearly 3 months, but not true. Everyday we see her grow. We track her progress. We see her struggles. And eventually you start to see her supreme strength and a little personality emerge. We love her more every single day we see her. She becomes our daughter more and more every day.

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Holding London on April 22, 2014, right before saying goodbye for the day.

You realize there are hours in every day that she might be alert and you won’t be there. Sometimes you have to leave right when she is super alert and scanning the NICU air space for a familiar outline or voice, but you have to go because you have to eat, you have to sleep, and all that is at home, not at her NICU pod. So, yes, at some point you have to pry yourself away from her isolette, watching her as every step you take, takes you closer to that corner where you will lose sight of her until you’re back the next day. You can see that her eyes are trying to track your fading image. Her forehead wrinkles as she does. But sometimes you still have to walk away. No, it doesn’t get any easier leaving her at the hospital. It gets harder.

Every time you round that corner and she disappears, you instantly start thinking about seeing her the next day. How will she have changed between one visit and the next? How long will she be awake while you are gone? Every day you have to round that corner and leave your heart there in her NICU pod. The only time of day you feel complete is when you are by her side. Her NICU pod is the site of happy reunions every morning and angst-filled goodbyes every night.

Some thoughts keep you going. One day, you will get to carry her out of the NICU with you. She will get her first breath of fresh air. She will squint from the sun’s glare for the first time. She’ll see the crisp, blue sky, watching as clouds drift overhead. She’ll hear birds chirping and singing. Maybe it’ll be raining. You will have the honor of introducing all of that and more to a little human being who will have spent her first 100 days of life inside a hospital. You will then have the terror of driving her home, but with the reward of carrying her into that home, where you’ve dreamed about her every night since she was born, where you’ve been toiling in her room to get it just right, where, finally, you will feel complete.

 

Forget About Stress Eating, We Forgot to Eat

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A few words about food. If you have found yourself in a situation similar to ours, you will know that really simple things, like grocery shopping, cooking, eating…heck, even bathing, become so overwhelming that they don’t get done. Of course, that is if you even think about them. There were quite a few mornings that I did not think about them at all as I sat in the NICU holding London. Then, around noon, when I would start to think about lunch, I’d realize I hadn’t had breakfast. I hadn’t thought about it at all. Trust me when I say this, I have to be extremely stressed out and busy to completely forget about eating.

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Coq au vin, prepared by my mom. With Odell beer and Highland Park 18 Yr Scotch.

Things were like this for a while. Kate and I did not have the time or energy to sit down and plan meals for a week and then figure out the necessary items to pick up at the grocery store. It was never going to happen.

We had so many people asking us how they could help. I don’t know about you, but it feels weird to say things like, “Well, we could really use a dinner tonight,” or “Do you want to go vacuum our house?” “Do our laundry?” “Bring us lunch at the hospital.”

Luckily, we have some amazing friends who know from their own experience or the experience of others that stepping up and providing a meal is the best thing you can do for parents who have a baby in the NICU.

We had meals in the freezer for weeks. Friends even came into our house while we were still at the hospital and made dinner, so when we got home there was soup in the crockpot, bread on the counter, and salad in the fridge. There were meals on our doorstep, driven in from Boulder. There were strangers at the door, well, someone who knew someone who knew Kate, dropping dinner off and telling me, “You look tired. Be sure to get some rest.” There were people showing up at the NICU to meet London, but also handing us a meal. There was a Trader Joe’s gift card in the mail. There were parents who cooked amazing meals for us at the end of a long day in the NICU.

I did not do a big grocery shopping for four weeks. I occasionally had to get a few items like milk (of course), eggs, and bread, but other than that, we survived on peoples’ kindness and generosity for weeks, even months. I want to write that we could not have made it through the NICU days without them, but that is silly exaggeration. We would have made it, we just would have survived off countless Chipotle burritos, Einstein bagels, and Panera sandwiches. For bringing a home-cooked meal into our home, we thank you. For keeping us far away from regular fast food stops, our tastebuds, waistlines, and digestive tracts thank you.

At Last, Some Answers

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Today, a little something I wrote in a journal back in March. Just a word about this entry, and others like it, is that they often take the form of a letter to London.

March 8, 2014

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Holding London on March 14, 2014.

Held London during Kate’s first baby shower.

Leaving the NICU, walking out into a beautiful sunny day, driving away with the sunroof open, sort of crying. Just hits me how I have to leave you behind every day. You are stuck inside and your world is so incredibly small right now. I can’t grasp how much I love you. I can’t put it into words. It’s a depth of feeling that transcends any prior experience. When I am able to grasp just how much I love you, it lasts a second, in which I am overwhelmed, in awe of creation and what God has blessed us with.

There is something uniquely peaceful about spending time with you alone. You were so good today, satting high and just zonked out on me.

You know, at times throughout this experience I have wondered why we are going through this. Is it something God planned? And I’ve been cynical at times, doubting that saying a prayer would help lasix work as best as it can. At times I am uncertain about the answers, but I am certain of one thing: your arrival has awakened in me a love I never knew existed. It has finally put into perspective how strong God’s love for us is. He looks upon us as newborns, perfect, innocent, like we can do no wrong.

You’ve brought me closer to God, into pure love, than I have ever been. The path forward is not without worry, but it is clear. Clear in that my life up until your birth has shown me exactly how to love you and your mom through all this. I didn’t know I had it in me. I didn’t know if I could. If someone had asked me how to proceed, I would have said I don’t know. Now you’re here and, at last, I have some answers.

 

For Your Eyes Only

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The hospital handout we received on Retinopathy of Prematurity (ROP) after London received the diagnosis describes it this way:

The retina is the inner lining of the eye that receives light and turns it into visual messages that are sent to the brain. If one thinks of the eye as being like a camera, the retina functions as the film. Blood vessels that supply the retina are one of the last structures of the eye to mature; they have barely completed growing when a full-term baby is born. This means that a premature infant’s retina is not yet completely developed. For reasons not yet fully understood, the blood vessels in the immature part of the retina may develop abnormally in some premature infants. This is called ROP.

Every NICU employee did a fabulous job explaining this to us. However, as a parent, this little bit about ROP tends to stick with you more than anything else:

In the most severe cases, the abnormal blood vessels form scar tissues, which pull the retina out of its normal position in the back of the eye. This problem results in severe loss of vision of blindness. Fortunately, this occurs only rarely and laser treatment can often prevent the retina from detaching.

That “fortunately” is so reassuring. If you aren’t catching my drift, I am being sarcastic. Perhaps, if ROP was the only thing we had to worry about while London was in the NICU, the “fortunately” would have been more promising to us, but it was hard to take any comfort in the prognosis of ROP after we were already dealing with chronic lung disease, fluctuating sodium levels, and a brain hemorrhage.

A week or two after London’s ROP diagnosis I wrote an email update to friends and family:

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Shielding her eyes from the bright lights. This photo was taken on the day London decided she no longer wanted to be vented.

Kate and I found out today that London will most likely need glasses throughout her life. There are worse problems to deal with, but I haven’t taken that very well. Glasses are just another thing on her poor face, which has never been truly free of clutter.

We received many responses, but a few stood out. These were the responses that assured us that glasses are not really a big deal and they do not look bad. I know these people were trying to comfort us, but I don’t remember any comfort to be found in their responses. What does stand out about that moment was the realization that these people will never fully understand what London, Kate and I are going through because their babies did not have the same start to life as London. I thought I had made it clear in the email why I did not like the idea of glasses, but let me try again…

As a parent, no matter how long your child is in the NICU, you long for a time when that child won’t need some medical accoutrements to stay alive, to function normally. You crave a purity for your child, the purity many full-term babies get to have, the purity of a perfectly functioning, little body with no attachments, IV lines, or patches on the face. You want your child to experience this and you want to look upon your child when they do. When we heard glasses were a possibility, we were moved further away from that purity. After months in the NICU, something as simple as glasses can be a heavy burden. That’s why I did not take the news well.

What Not To Read

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

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

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

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