26 Weeks

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.

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.

Handle With Care

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Yesterday I wrote about holding London for the first time. Today I thought it appropriate to share a video of picking London up directly from her isolette. The video shows me doing this for the first time. The day of the first hold, I was seated in the chair already when the nurses placed London on my chest. Although that was complicated, it is a far more perilous task to pick London up out of the isolette and then move backwards with her to the chair and sit down. The most worrisome aspect of all this is the kink that can form in the oxygen tube when we move London. If that tube is not supported properly once she is on our chests it can once again kink.

When London was vented, it took about five or six minutes to move her and get her situated on us so that both London and parent were comfortable. I trimmed this video to just the first two minutes. At the beginning, you’ll be able to hear a lot of chatter about my height. This happened a lot in the NICU, but as our time there continued all the staff grew accustomed to my height, at least to the extent that they didn’t feel the need to tell me I was tall. If the video appears as huge on your screen as it does on mine, so big that you cannot see the whole video on your screen, press play (middle of frame), and then just click the full screen icon in the lower right corner of the video and you’ll be golden.

London’s Email Updates

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I sent the first of many emails updating family and friends about our situation at 2:43am on January 30th, one hour and nineteen minutes before London was born. It reads:

Hey Dear Friends,

We‘ve spent the night at the hospital because our little girl is coming early, really early. Kate felt some pain last night around 10 and we thought it necessitated a trip to the hospital. We are very thankful we came here because Kate’s water broke about an hour after we arrived. Kate is stable and the baby is doing okay for now, but Kate won’t be leaving the hospital until the baby is born. We don’t know exactly when that will be. It could be a day, weeks, or over a month.

We all need your prayers, happy thoughts, and whatever positive vibes you can send our way.

Love,

Bryce

Of course I had to send out another email very soon after that:

Update. The doctors needed to go forward with a c-section. Kate is doing great in recovery. Our daughter, London Grace Perica is also doing well. She was born at 4:02 this morning, 2 lbs 6 oz, 14.75 inches long. She’s stable. Very crucial period right now and I am so thankful for all your prayers and support.

Love,

The Perica Family

From that point on, email was the way to keep everyone in the loop regarding the many ups and downs of London’s NICU stay, but especially during those fragile first weeks. We received so many responses from these two small emails that it has taken me hours to scroll through them and the brief exchanges I had with some of you who asked specific questions about London’s health and how exactly you could support us through this time. The email conversations with some of you never stopped for the entire time we were in the NICU. Sitting down to write weekly updates about London’s progress or sometimes lack of progress was therapeutic for me. Writing the emails allowed me to calm down some after an especially frustrating or scary day. I wrote them next to London’s side, or during dinner at home, and sometimes they were the very last thing I did at night, tapping out emails on my iPhone in the dark with Kate sleeping beside me. It was a form of meditation. It is something that I would recommend to parents in a similar situation. Whether you are just emailing your parents or a huge group of friends, sending updates may trick you into thinking you are spreading the burden around. It may have had that effect on me.

Inevitably, I grew tired of sending out email updates about London in the NICU because all three of us just wanted the hell out. Writing the last update on May 22, three days after London came home was the best email I have ever sent. I have shared it below. Thank you for responding to emails throughout London’s stay and for reading further on this blog about her time in the NICU and raising her there and at home.

May 22, 2014, 11:34pm

Friends,

On Monday, after 109 days in the NICU, Kate and I walked out of the hospital with London. We were helped out to our car by one of our primary nurses, Megan, who was there the morning London was born and admitted to the NICU. By Monday, we had shed enough tears with Megan (and London’s 3 other primary nurses) throughout London’s NICU stay that there were only smiles on our faces as we loaded London into the car, hugged Megan goodbye, and drove home very carefully.

London has come home with an NG tube since she was not taking 100% of her milk through bottles. Kate and I both placed NG tubes in London before she was discharged. London has the tendency to yank them out so we need to know how to insert a new one. When necessary, we use a pump to give her the rest of her milk. She is on oxygen, as are most preemies in Colorado when they come home. At this point, it’s also necessary to hook her up to a monitor at night. Baby came home from the hospital with a lot of hardware, but we’ve got it all figured out.

London had a follow-up head ultrasound before discharge. We received the results on Monday before we left. The bleed in her brain has been completely reabsorbed. However, her ventricles are still enlarged. At this stage the doctors would like to see them a bit smaller, but they aren’t concerned enough at this point to do anything clinically. They will monitor her closely in follow-up appointments. At this point, we wait it out a little bit and hope the ventricles decrease in size. This was not 100% positive news, so it was a little unsettling to receive it the day we left, but it does not really change London’s outlook at this point. Other news we received before London was discharged…She had one more eye exam before going home. Her ROP continues to improve.

Though we are sure to face quite a few more challenges with London’s health and development, we are of the mindset that the biggest and scariest obstacle, the NICU stay, is behind us. Thus, I am finally ending this long email chain. Thank you so much for all the meaningful and loving replies and for your interest in London’s progress while she was in the NICU. Thank you for the prayers. It was always humbling to know how many people were lifting us up. I could say thank you for so many more things, but it would be a long, boring list, which would fall short of expressing our gratitude for you and the profound joy that has come to us in our little girl and finally getting her home.

Our Love,

bryce, kate, & london grace

Life Goes On, But Something Was Lost

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“I love you, my child. My Child. Still can’t believe it all. Wishing you were still safe inside me and that I could feel you. I miss you, little girl. Be strong.”

– From a letter Kate wrote to London on January 31, 2014. London was one day old.

 

I start today’s post with this quote because in a few sentences Kate conveys the sense of loss mother’s have when they have their baby so early. Sense of loss is somewhat misleading (London was stable in the NICU), but Kate knew and I knew that the safest place for London and also where she would still be developing the best was lost. That was not the only thing lost though. A full-term pregnancy was now just a dream.

Kate was just starting to look pregnant when London arrived. Our closet was full of maternity clothes waiting for months 7, 8, and 9. In fact, the day we got home from the hospital I helped Kate up the stairs and followed her into our room. Shortly thereafter, I heard Kate in our closet and walked in to see what was going on. Kate stood staring at a rack of maternity clothes with tears running down her face. I listened to Kate and held her. Seeing Kate so sad about not getting to wear these clothes even made me cry.

As a father, I do not know the sense of worry and loss a mother has when, without any warning, the human being growing inside of her is out over three months early and exposed to a world she wasn’t supposed to see until spring. But now, having a wife who has gone through that, I have a decent understanding of what that is like.

The sense of loss manifests itself in a variety of ways. One of the strongest, at least in the first week after London was born, but one that also fades over time, is how painful it is to see pregnant women who are full-term or damn near close. To be honest, both Kate and I hated seeing very pregnant women for a while. We were comforted to know this is completely normal. In the two days after London was born, we received a slew of emails, calls, texts, and cards from people who wanted to let us know that they were praying for us and for London. A few of those contacts had preemies themselves. And in one particular email, a mom wrote, “you will hate seeing very pregnant women.” She nailed it. We both did. One of the first days out of the hospital we went to Baby’s R Us to stock up on some breast pump supplies. There were couples everywhere and it seemed like every single woman was about to pop. It was extraordinarily tough. I ran out of dagger eyes to give.

Being bothered by the sight of very pregnant women was the product of our envy during those early days. I remember I would see a couple who is clearly having a baby very soon and think, damn, they’ve got it so easy. They really have no idea. Look how they’re wandering the aisles at Baby’s R Us without a care in the world. Of course, our attitudes have since changed and I no longer think that those soon-to-be parents had it so easy. Having a baby is a lot of work, no matter the gestational age at birth. However, if having a full-term, healthy baby was exactly the same as having a preemie, I would be lying to you and severely devaluing our experience, the experience of thousands more, and the NICU and everyone who has ever worked in one.

I am so sensitive at times to other people’s feelings that it took me a long time to realize that even though this is our first time around with a baby, I know it has been more difficult than if London had been born full-term. Sharing that in the months since London was born and even now, I feel sort of like a jerk because it boils down to me saying, “Well, we have had it quite a bit harder than you.” I know that can sound like I am devaluing the difficulty of having a full-term baby, but that is not my intention. I am just trying to speak truth from our experience and that of the other parents in the NICU right now, who also know that with the littlest life they were blessed with comes the most terrifying and stressful days of their lives and the knowledge that although life goes on, something has been lost.

Why Was London Early?

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*In which I try to fill in some medical details I left out of the posts regarding London’s birth.

The doctors never exactly figured out why London was born early. London’s premature birth may or may not have been related to a very small blood clot seen in one ultrasound quite a few weeks before London was born, but the doctors never seemed overly concerned with what they saw.

We don’t know why Kate started to have contractions, but we were very thankful we went to the hospital when they started. As noted in an older post, once Kate’s water broke we knew things were very serious, but we learned shortly after her water broke that doctors can successfully put fluid back into the uterus so the baby is once again protected. They tried this for Kate and, obviously, it didn’t work.

The next option the doctors had was to simply stabilize London and Kate so they could theoretically rest for a week, hopefully, until London was delivered. This would have given London a huge boost. She could have received all the benefits of betamethasone, which would have drastically strengthened her for the outside world and would have better protected her from the stresses of delivery.

London’s heart rate kept dropping due to her funic presentation, this is “where the umbilical cord points toward the internal cervical os or lower uterine segment.” In the most serious cases, this can lead to an umbilical cord prolapse. This is when the umbilical cord “protrudes into the cervical canal,” and why London’s heart rate would occasionally drop due to Kate’s contracting cervix. A medical website describes the situation as “an obstetric emergency that in a viable fetus necessitates an expeditious delivery.” The same medical website, radiopaedia.org, reports that umbilical cord prolapse occurs in 0.2 to 0.5% of all pregnancies.

So we will never know what set this all in motion, but we do have a clear reason why London needed to come out as quickly as possible. On January 30th, had we not been near a hospital that could perform an “expeditious delivery,” I would not be here today writing about raising London. Kate and London’s treatment in the hospital was miraculous, a true marvel, but it was just as miraculous to us that we were a ten-minute drive from a top-of-the-line NICU.

London’s Birth: Part XIII, That time I cried in the shower

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*This is the LAST post in an ongoing series. That’s good, because had I gone on a bit further I would have exceeded my knowledge of Roman numerals. Scroll all the way down or click to part I to get to the beginning.

Kate was able to sleep for an hour and a half after we got back to the room. I stayed awake and waited for Kate’s sister, Kendra, to arrive. She was driving down from Laramie. I know she got some sleep the night before, but it was minimal and she was not willing to wait another three hours for her parents to get to Laramie on their way to Denver. She would be showing up around 12:30. That is when London had another care time. I was back taking some pictures of London at 12:34pm. I took the first video of London. It’s a 15-second clip of London lying there, chest moving up and down incredibly fast as the vent pumps air into her. Her sternum and ribs are clearly visible. She is so skinny. Her eyes are still fused shut at this point. Her arms are out to tIMG_3101 - Version 2he side, they both have lines in them.

After London’s cares I went back to Kate’s room and Kendra had arrived. Kate was filling Kendra in with the details of the birth because when Kendra arrived she didn’t know that London had been born. I had been waiting to go home to get us clothes and everything else we might have brought to the hospital in three months when we were planning on having London. Now that Kendra was at the hospital, I could do that.

I told Kate my plan and she gave me a list of things to bring back. We were saying our goodbyes when she added, sort of jokingly, “Are you going to go home and break down in the shower?” I smirked, but as soon as she said it I knew that probably was where I was going to break down.

Once home, I grabbed some food. It was after 1pm and throughout the night all I had eaten was a small bag of salt and vinegar chips and a Monster energy drink. I was not as famished as you might guess though; I had more pressing issues than needing to eat over the last 15 hours.

I packed up a couple of bags for the next night and day. I looked in the mirror. I badly needed a shower and sleep. My eyes were bright red and a little puffy. Sleep had to wait, but at least I could try making myself presentable. Into the shower I stepped, and there I cried.

If you’ve ever been around someone who has just lost someone very close to them in a tragic, sudden way, you know how they cry. It is a heart-wrenching sob, which racks the body. This was the kind of cry I had in the shower. It lasted five seconds but then I composed myself and took several deep breaths because I had not lost someone. For me, Kate, and London, life was intact.

Prior to this moment, I had just wept, but finally getting to be alone and having the time to come to grips with the last fifteen hours launched me into a private expression of fear, sadness, gratefulness, and joy. Fear because there were times during the night I thought I would lose my wife and then at other times I thought I was going to lose my daughter. Sadness because I was mourning not having a full-term, healthy baby, one who did not face an arduous months-long stay in the NICU, where there are no promises. Gratefulness for the professionals who saved the most precious people in my life. Gratefulness for modern medicine. Gratefulness for health insurance. And joy, because after all that happened the night before, I was still a husband to an amazingly strong, smart, and beautiful woman and now I was a dad to a baby girl who I felt like I knew so much about so soon after her birth because of the way I had seen her fight for her life. All this had been building up and now emotions were overflowing.

I finished getting ready, grabbed the bags, and went to the hospital. Took elevator D to the fourth floor, Neonatal Intensive Care Unit. Settled into a chair next to London. Accustomed myself with my new home. Closed my eyes. Took a deep breath and exhaled. Opened my eyes and started an entirely new phase of life in the NICU.

London’s Birth: Part X, Into the NICU

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*This is another post in an ongoing series. Scroll all the way down or click to part I to get to the beginning.

Right outside the double doors the charge nurse introduced herself. She guided me through a winding path of at least sterile-looking hospital hallways. Now was as good a time as any, “Can I get a new mask?”

“Of course,” she said, stopping at a counter and getting me one and several tissues. I pulled my mask away and took a peek at the inside, not a pretty sight.

I followed the charge nurse to a pod. Each baby in the NICU we were walking into stays in a pod, not a room necessarily, but more like a cubicle with walls nearly to the ceiling. We walked the length of the NICU, took a left and there was London, skinny, vented, cleaned, and holding on. The doctors kept telling me she was receiving surfactant, which is a mixture of fat and proteins made in the lungs, but preemies are often born before their lungs can produce enough surfactant. The mixture coats the alveoli, or air sacs in the lungs, and this prevents the alveoli from sticking together when the baby exhales. A nurse said London’s lungs were like a hardened sponge right now, not ready for life outside the womb.

I stood there for five to ten minutes, all the while an occasional nurse and doctor would tell me about what they are doing or what they plan on doing. I did not retain that much. I was just locked to my daughter and I was in sort of an emotionless state, unable to fully register the last six hours. I was thinking enough to take my phone out and snap a picture of her. I was hesitant to get close. I had the same feeling I had earlier in the OR, stepping up to the bedside and taking a picture of London meant I was getting closer to her. I was letting my guard down. I was starting to realize that five and a half months ago we embraced the idea of creating a life we ultimately had no control over. The unknown and deeply frightening future belonging to my daughter was coming into sharp focus. I took two quick pictures. London with a full head of hair turned to her left, eyes fused shut, gaping mouth with the endotracheal tube snaking out of it, monitors on her chest, blood pressure cuff and pulse ox on right arm, umbilical chord clamped shut, plastic covering her lower body to keep it humid, and a nurse’s blue-gloved hand holding her legs down. I said a quick prayer when I took the picture, please God, do not let this be the only picture I get to take of her.

Sometime later, the team was prepping London to place a peripherally inserted central catheter or PICC line and an umbilical catheter. They told me it was a good time to go check on Kate because they would be working for a while. I thought that sounded great. I took a picture of London’s pod number, “Pod 3, 423,” not knowing if I would be able to find my way back or if I would need that information later on. I started stepping away from the pod and realized I had no clue where Kate was now. Someone took me to a room, which looked like it was used to just house patients in limbo who might be fresh out of surgery and do not have a room to go to. There were four hospital beds and four curtains, but none of them were drawn. Kate was the only patient there. She looked great to me because she was still here, conscious, and strong, but she looked amazingly tired, which is to be expected. I know I looked like hell. We chatted about London and where she was placed in the NICU, what they were doing to her, her weight and height. 2 lbs, 6oz and 14.75 inches long.

London’s Birth: Part IX, What’s her name?

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*This is another post in an ongoing series. Scroll all the way down or click to part I to get to the beginning.

Throughout the operation there were tears slowly dripping from my eyes and my nose was a leaky faucet. I was aware that my snot had flowed through my mask and even in that moment I was mildly annoyed with the thought of having to ask for another mask. I would ask later, when the time seemed right. Until then, I tried to minimize the flow of tears and snot.

It may sound like my eyes were wandering once my daughter was out of Kate, but they weren’t. I glanced for split seconds here and there, but my eyes were essentially locked on the little human being in front of me. Vented now, the doctors seemed a little more relaxed with her and ready to move. They told me where we were going. It went in one ear and out the other. I would follow them anywhere. They started to roll my daughter a bit, making for the double doors I had come through to enter the OR. They halted for a second, one NP turning to me and asking, “What’s her name?”

I had not yet imagined when I would announce to those present in any room the name of my daughter, but if I had, it would never have crossed my mind that this would be how I would introduce her to the world. “Her name is London,” I announced. It sounded weird giving a name to her at this stage because when your child is born this small and fragile, they almost seem like a science experiment. I had started to become aware of a disturbing, but natural protection mechanism that sets in when you see your preemie like this. I wanted to protect myself from her in a way. I didn’t want to become so attached to her just in case I lost her in the next hour, but giving a name to her instantly made it harder to keep my distance.

London and the team working on her started moving out, rolling right by Kate’s face and slowing down a bit so she might possibly get a glimpse of London’s face. I saw Kate strain her head to try to see her baby before we went through the doors. I stopped and gave Kate a huge kiss, an exchange of tears cheek to cheek, and a word about how London is vented. I also checked that I should keep on walking with London and the team. Kate nodded yes and I was off through the double doors with an “I love you” and one last glance at the amazing team sewing up my wife.

London’s Birth: Part VIII, 18 People

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*This is another post in an ongoing series. Scroll all the way down or click to part I to get to the beginning.

I confirmed with Kate that I was to go be with the baby now. We kissed. I told her she was doing great and walked to the foot of Kate’s bed where the doctors had placed my daughter’s very small bed.

In front of me was an impossibly small baby girl. To call her a baby is not quite accurate. She looked more like a very, very small, skinny human being. There was no fat on her and she had none of the cuddly attributes that full-term babies have. There were seven doctors and residents attending to her, looking for signs of breathing, mostly. They seemed to poke and prod here and there with their hands and a few tools.

Immediately to my left, Kate was on the operating table, with her incision still wide open. I didn’t stare long, but I felt comfortable looking at the incision and the tissue and organs that were being rearranged so they could settle back into place. I turned my head ninety degrees right and continued to watch the doctors revive my daughter. I saw them prepping a blade to start the intubation when another doctor informed me that was exactly what they were being forced to do. She said this was very common. She was tall, had blond hair, and I remember a minute after my baby girl arrived on her miniature bed, she referred to her as a him. I clarified, “It’s a girl, right?” She looked again, “Oh, I’m so sorry.”

My daughter was successfully intubated a moment later. Her head and neck seemed impossibly flexible for the doctors to place the blade and insert the endotracheal tube. I looked left to Kate again. A nurse walked right in front of me carrying a metal dish with a big red blob in it that had what looked like puncture wounds. It was the deflated, tragic looking placenta that had prematurely detached from the uterine wall, aka placental abruption.

The OR was highly organized chaos to my uninitiated eyes. I took a moment, counting all the people in the room saving my wife and daughter. Eighteen. It was the beginning of a deep, new appreciation for the professionals around me. I was learning in the quickest and most explicit way possible that the quickest way to my heart was to save the two people dearest to me. It was early to have this revelation because I didn’t know if everything was going to turn out fine, but I still felt like I would love and cherish these people for the rest of my life because of their effort here.

London’s Birth: Part VII, 27 Minutes Later

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These posts are in reverse chronological order. Read earlier posts first. They can be found by scrolling all the way down or clicking the links provided here: Part I, Part II, Part III, Part IV, Part V, and Part VI.

The only time I have ever seen a C-section setup in an OR was on ER. Well, in that respect, the set of ER got it right. Kate’s neck and head were peeking out from a curtain draped across the top of her shoulders. There was a nurse standing to the right of Kate’s head. There was a chair positioned to the left of Kate for me to sit in. I walked over and sat in it. I gave her a kiss. We exchanged “I love yous” and I sat down.

At this point, we didn’t have to discuss whether or not I would watch the baby come out or whether I would go be with the baby once she was out. Just a few days ago at home over dinner we had talked about what we would do in the case of a C-section. I said I would sit by Kate and would want to be present for everything. We agreed that I would go be with the baby once she was out of Kate, if Kate was clearly doing okay. I also expressed interest in seeing the baby being pulled out. In hindsight, it is incredible that we had this discussion already.

When seated next to Kate, I couldn’t even see the doctors working on her lower body. Kate said all she felt was pressure. I could see Kate’s head and shoulders shifting up and down and left to right on the bed as the doctors peeled away the layers, pushed things to the side, and cleared a path to the uterus.

The urgency of the C-section and the speed at which it all happened was astounding. I was not next to Kate long before the nurse next to her spoke up, “They are about to pull her out. Do you want to look?”

“Yes,” I said. The nurse would tell me when to stand up and look. “Okay.”

“Alright, stand now if you want to see,” she said.

I hesitated just for a second or two, perhaps not quite ready to see what I was about to see, scared to see what I was about to see, or just trying to register the moment. I’m sitting by my wife behind a curtain and on the other side is the rest of my wife’s body with a significant opening in it from which they are pulling out this human being we made, our daughter, who will be in my thoughts for the rest of my life no matter what happens in the next few minutes, hours, or days.

I rose from my chair and saw two doctors lifting my daughter up out of Kate. My daughter’s foot, the last part of her touching Kate, was just slipping the protective casing that had collapsed around her. Nothing could have prepared me for that view. It was beyond beautiful and it literally took my breath away. My legs gave out a bit and I had to sit down quickly. I was crying and Kate was looking at me expectantly. “She is the most beautiful thing I’ve ever seen,” I reported. We smiled through our tears. It was 4:02am, twenty-seven minutes since I had texted my dad, saying we were going to the OR.

London’s Birth: Part VI, At the Doors of the OR

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Parts ONE, TWO, THREE, FOUR, and FIVE of this series should be read first.

The walk to the operating room was extraordinarily difficult. Dwelling on a worst-case scenario was unavoidable at times. Kate occasionally cried while she was being pushed toward the OR. The doctor told us that they would do their best to use local anesthesia so Kate could stay awake and so that they wouldn’t have to intubate her. I was told that I couldn’t come into the OR until the team had determined what type of anesthesia Kate would need.

At the huge double doors to the OR I had to say goodbye to Kate. No other goodbye I’ve had in my life had been that hard. How long was I saying goodbye for? I didn’t know for sure. Five minutes? I hope so. Five hours? I hope not. Five days because they had to intubate her and then there were complications? I don’t know how I would have gotten through it. But there was also the question in the back of my mind, for forever? The team pushed her through the doors and I was alone in this barren anteroom with two chairs and a couple of carts with masks, gloves, and other sterile clothing.

I did not expect to be alone at this point. I thought someone might stay with me. I sat down on one of the two chairs. At this point I continued praying, which I had not stopped doing for a while. It felt more like begging at this point or, more accurately, making demands of God. I sat with my head in my hands.

In a few minutes the doctors were attempting to place the epidural. Kate was screaming like she was being cut open. The trauma of having an emergency C-Section at 26 weeks coupled with the pain of the needle is enough to make any woman scream. I didn’t know what sounds to expect from the OR at this point, but that was as much as I could handle. Still seated, I think I may have been rocking back and forth at this point, still with my head in my hands.

The doors to the OR were to my right. A few doctors went through them once they got gowned up. Some of them wore clear shields that covered their whole face. One knows exactly what these are for. They’ll protect the doctors’ faces from splatters from cutting my wife open, moving aside some organs, and pulling a little human being out.

A doctor came through a different set of doors to my left. As she gowned up and scrubbed in she spoke with a healthy dose of authority, giving me a one-minute crash course on 26-weekers. “They have an 85% survival rate,” she said. That is higher than I thought it would be, I thought. “A common complication is with the eyes. It’s called ROP. It can be fixed with laser surgery,” she continued. And with that she walked through the doors. She was just very matter of fact and did not give me a parting “goodbye” or “see you in there.” But I completely understood. She was going into the OR to save the two most precious people in my life. If I could have sped her up somehow I would have. Godspeed, Lady.

A few more minutes passed and a different doctor came out of the OR with good news. “Kate is on a local anesthetic and doing great. You can come in now.”