Healthcare

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.

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.

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.

London’s Emergency Extubation

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A distinct feeling came over me as I looked at Kate’s eyes, huge and unblinking, staring straight ahead at London, the feeling that I could say nothing and do nothing to comfort her. I had never felt this. Though there seemed to be little value in it, I stood next to her and put my arm around her shoulders and held her tight while we both looked on, wondering if we were watching London pass away in front of us.

Thirty minutes earlier Kate had been holding London. It was a less than comfortable kangaroo care for mom and daughter. London never seemed completely content on Kate’s chest. She would squirm every other minute and toward the end of Kate’s hold time, as we bumped up to another of London’s cares, London was desatting more than usual. Eileen, London’s primary that day, was not too concerned. Neither were we. London did this every once in a while and usually when we placed her back in the isolette or changed her position, she would stabilize.

We got London back in her bed and proceeded with her cares. She initially checked out fine, a little desatting still, but nothing too serious. We had moved on to her diaper change. London decided to fill up the new diaper before we even had it sealed, so we slid a freshie underneath that one and took the soiled one away. She did the same thing with the next diaper so we got a third. Her bowels were working just fine. Before we were able to seal up the third, London started to desat again, but the saturation number was dropping further and faster than we had previously seen. I saw it in Eileen, not panic, but a flicker of concern across her face that told me she seemed to know that turning around to crank up the oxygen on the ventilator was not what London needed at the moment.

I stood at the foot of London’s isolette and watched as Kate handed Eileen the resuscitation bag and mask as Eileen had requested. Eileen quickly placed it over London’s nose and mouth and began squeezing oxygen into London. There was no response. London’s saturation numbers were still dropping. Another nurse stepped up and asked Eileen if things were okay. I had heard nurses ask this of Eileen before, but had never heard Eileen request help until then. The second nurse came in and took Kate’s spot next to London. I took a step back, not wanting to be in the way, but probably out of fear as well. The nurses worked now with a sense of urgency we had not seen since London’s first minutes out of the womb.

London was not responding to anything, looking quite a bit more lifeless than a normal desatting episode. Not just her lips were blue, but her face was starting to turn ashen. More nurses had come to help. I am not aware of how many stood just outside of London’s pod, but I saw Eileen look at one and sternly say, “Go get the doctors.” Kate and I knew then that we would have to make way for more people in the pod. We stepped out to a position where we could still see London and the numbers on her monitor.

The doctors were at London’s isolette within seconds. They were talking fast. Eileen updating them on what had happened so far. I strained my head to see London’s face through the team around her bed. I got a glimpse of her body, she looked like she was shutting down. Her oxygen saturation number was a single digit and her heart rate was very low. I saw the fellow extubate London in what seemed like a half second. I strengthened my hold on Kate. We did not speak to each other, just stood, watching. Like the night London was born, my mind was in two places, there next to London’s pod, where I took in the frantic sight of my daughter’s life being saved, but also somewhere else, where I was cycling again and again through possible outcomes of all of this.

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London minutes after her emergency extubation, totally oblivious to what she had just put her parents through.

A resident approached us and calmly informed us that they were moving London to CPAP. A minute later London’s stats had rebounded halfway. Nothing was breaking my gaze from that monitor. Her numbers kept creeping up as a doctor explained to us what might have happened. Her endotracheal tube might have been out of place or she might have just clamped down on it somehow. They did not know for sure. The pod had cleared out somewhat and we took steps toward London. Eileen, stoic and so professionally cool, was there helping London back up.

London’s stats were almost back to normal. Her color was improving. She did not have a clue about what just happened because she was inexplicably calm. Kate held out her hands to grab London’s arms. I took a picture. The episode was over. Moments earlier there had been 8 to 10 people around London’s isolette, she was blue, and Kate and I were watching and crying. The whole event was probably over in 8 minutes, but it felt like 20 for us. I did not know if this was par for the course at the NICU. It certainly did not seem like it. Over the next three months I did not see or hear about any other emergency like this happening in the NICU. The whole matter was boiled down to one line in London’s discharge report, “She was extubated to bubble CPAP of 8 on DOL 23.”

As I left the NICU on DOL 23, I did not know what else to say to Eileen that afternoon. I had said thank you a couple of times and felt so dumb saying it. Couldn’t I have come up with anything else to say to the nurse who had just helped save my daughter’s life? That was all I had then so I walked out of the NICU for the afternoon, thinking about how I have watched London’s life saved twice now and distilling that down to its bare bones:

I am a dad.

My daughter is incredibly small and fragile.

I just watched 8 people save her life, like I had three weeks prior.

The weight of that hit me like a strong kick to the chest as I walked out the hospital’s main entrance. I lost my breath and inhaled deeply. Then I exhaled, holding back a wave of tears and emotion fighting to come out. And then, when that emotion overcame me, it came out as a big, deep whimpering sigh of relief followed by an upward glance to take in the beauty of the crisp, blue February sky. I thought, wow, what a ride. Never thought I’d be on a ride like this. Don’t know where it’s going. Don’t know how many ups and downs are left, but I just experienced the nadir of our NICU stay so far and perhaps one of its highest points, London stabilizing on CPAP, all in a matter of minutes.

I found myself asking, did that really just happen? What’s next? I did not even want to know. I was enjoying my victory walk that afternoon, trying as hard as I could to not think of the battle we would inevitably fight the next day or the one after that. One day at a time.

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.

The First Hold

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Due to London’s umbilical artery catheter (UAC) line and her general fragility, we could not hold her until she was a bit stronger so the UAC line could come out. They pulled that line on February 10, a Monday, and we were told that the next day we would most likely get to hold our daughter for the first time. Just the thought of that was tear-jerking and, I admit, a little intimidating.

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A new and improved family portrait.

The next day everything went as planned. So it was on DOL 12, that we got to hold her for the first time. I wrote in our journal:

I teared up as I saw you placed on your mom’s chest. You are so fragile and small. So helpless. We are absolutely in love with everything about you. After mom held you for a couple hours, I got to hold you. Kate took an amazing photo with one of our phones. It’s the best photo of us together so far…We reached a new level of love and connection to you today and it was all because of getting to hold you and be with you as we were meant to be with you at your birth.

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The picture Kate took. My favorite.

That photo Kate took is still one of my favorites. It will be for the rest of my life. It is such an explicit reminder of London’s beginning. That day I barely had to provide support with one hand to hold London up on my chest. She is wearing the smallest diaper available at the NICU. We have a couple of those diapers (clean ones) in our keepsakes bag from the NICU. When we show them off, most women compare the size of the diaper to a maxi pad. Folded up, the diaper is about the size of a kleenex, albeit slightly thicker.

The first picture of all three of us with London out of her isolette was sent out to everybody that night we got home. From February 11th on, there was not a day in the NICU for London when she was not held by one of us. Another of my favorite pictures is below.

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When Kate held London for the first time was when Kate transcended all previous definitions of beauty I held. It’s a moment that will be with me for the rest of my days.

Heart, Lungs, and Brain

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Starting with the discovery of London’s PDA on February 2, London’s day of life 3 (DOL 3), Kate and I were in for a whirlwind of diagnoses. We chose to treat London’s PDA with a course of indomethacin. Early on, we were told that London’s extubation relied on getting the PDA to close up. On February 4, we arrived at the hospital during a follow up echo. One of London’s primaries was there that morning. She lined up some chairs for Kate and I and my parents and said, “Sit down and watch the movie.” She was referring to the monitor where the image of London’s heart was visible. My mom had a very hard time watching it. She started crying a lot and had to excuse herself. She later said that the situation was much more real that morning than the night before, when she and my dad first saw London. To me, this was one of the first signs that Kate and I had been assimilated by the NICU. Watching another echo on our daughter was just part of the journey. We had not become numb to the alarms and the busyness of the NICU, but already we were growing tolerant of life there, teetering on the edge of tragedy and triumph.

The next day, when we found out the results of that echo, that London’s PDA had only closed a little, we were somewhat discouraged. We followed up with another course of indomethacin and on February 6 we were told London did not have any symptomatic signs of a PDA. However, on that same day, London’s oxygen settings on her ventilator increased to 50-55%. Finally, on February 11, we were told London’s PDA had officially closed. Had the drugs not worked, a minor surgery might have been necessary. We were so thankful we avoided that.

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Day of Life 2

Meanwhile, London’s oxygen requirements were not decreasing, if anything they seemed to be going up. This was due to her chronic lung disease, which many preemies get. X-rays showed London’s cloudy lungs, indicating there was quite a bit of unwanted moisture there. Her bronchopulmonary dysplasia was classified as severe. For this, London had Lasix as well as a weaker drug Aldactazide. Ultimately, these drugs seemed to provide only temporary fixes to London’s lung condition. London received caffeine for apnea of prematurity. The caffeine was done following a last dose on March 20. Much later on she received Prednisone therapy, which meant that she got shots every day for 10 days. She was then, and still is, one tough girl. She sometimes never reacted to the needle and when she did, it was a whimper.

As if concerns about her heart and lungs weren’t enough, we threw in the brain as well. The good ole’ trifecta. On February 6, London’s first head ultrasound revealed a Grade III R>L hemorrhage. I think for both of us this continues to be the scariest complication. We had an outstanding fellow that week who assured us that for years the literature on head ultrasounds has concluded that brain bleeds are not predictive of the quality of life later on. The scale for these hemorrhages is 1 to 4, with 4 being the most severe. Because of London’s brain bleed, she had to be monitored weekly with head ultrasounds to ensure there was no parenchymal bleed, i.e. Grade IV. Luckily, there was not. By the time London received her last head ultrasound in the NICU, the week of May 12, the bleed had been completely reabsorbed into the body, but her ventricles were still not as small as the doctors hoped they would be, but this was still not worrying to them, at least not to the point that they wanted to do anything else.

From the night the doctors got London out of Kate in 25 minutes, I have been in awe of modern medicine. Nearly every day in the NICU I marveled at procedures being done on London or on one of the other preemies (hey, sound travels pretty easily from one pod to the next). I felt so thankful that it was 2014 and not much earlier, like when babies with Grade III hemorrhages weren’t even considered viable by many doctors, thus ending the treatment of the babies with such bleeds. To know that London’s life would have been considered unviable decades earlier breaks my heart. The current view of brain bleeds is an advancement of medical knowledge that to NICU parents is a damn miracle. It is one of many we experienced during the 109 days we hung out with London in the NICU.

Little London’s Nurses

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When I first met London’s primary NICU nurses I did not know just how special they would become to Kate and I. In hindsight, that I would come to think of them as extended family in a way was inevitable. NICU parents have to get away from the unit for their own health, but for many other reasons as well. Life goes on. Jobs don’t wait. Other responsibilities don’t disappear just because you find yourself in this incredibly hard situation. So, when it comes time to leave the hospital, you leave your preemie first and foremost in the hands of your NICU nurse. Of course, there is other support, other nurses on the floor, nurse practitioners, residents, fellows, and attendings, but the one who is on the front lines, the first responder, is the primary nurse for your child.

London had four primaries. From the start they were the most comforting, knowledgable, and loving people. They were her first, and they will always be her best, babysitters. They taught Kate and I most of what we know about raising a preemie. They explained every twist and turn of London’s treatments. I could go on and on and write a long list of the many things they did for London and for Kate and I, but why should I when I can just write this: they ushered me into parenthood with such grace that when it was time to leave the NICU with London it was hardest to say goodbye to them.

As I continue to write about the experience of having a preemie, I will write more about London’s nurses. But for now, I will end this short post with this thought that I had long before London was discharged:  London’s primaries are people who, no matter how well we stay in touch for years to come, I will treasure for the rest of my life because I will never forget the way London was introduced to this world and thus, I will never forget the people standing by her bed during that tumultuous beginning.

 

NICU Noises

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As we settled into the NICU routine we started to accustom ourselves to the environment there. The NICU is a far cry from a nursery (pun intended), but one thing we noticed right away were the noises. They came from everywhere. Every preemie is on a monitor and every monitor has the potential to make some very loud, annoying beeps. The NICU we were in can hold somewhere around 50 babies. Combined with the beeps from the monitors, the cries, the noises from the staff and the visiting families, there really is no quiet time in the NICU.

London’s monitor alone made four different noises. Right away, you learn to fear and hate the beep for a brady (short for bradycardia) when the baby’s heart slows and blood flow decreases, followed by dropping oxygenation levels. The noise itself leaves no room for peace. I suppose that is the goal. It gets everyone’s attention and makes you want to hit all the monitors in the place with a golf club. Good thing I am not a NICU nurse. It took a while to get used to the bradys. They sound like a horrible thing, and they can be, believe me, but bradys are quite common for preemies. London bradied quite a bit. Occasionally we had to rub her on the back a little bit to get her to snap out of it, but most of the time she climbed right back up into a normal range without any stimulation. There were days when London barely bradied at all, but then there were the horrible days where every baby in our corner of the NICU seemed to have made a pact to all brady at the same time or take turns. Like I said, a parent gets used to it, but you don’t quite realize how normal the bradys can become until you have visitors and your baby bradys while they are there. The visitors looked way more concerned than we did after a while, especially if they are in healthcare and are used to taking care of adults.

The noise for when the baby goes apneic, or stops breathing temporarily, is slightly different than the brady noise. Don’t worry though, when you hear it you will still want to jump out of your seat and break the monitor over your knee while simultaneously appreciating the notification that your daughter is not breathing. London did not have many apneic episodes and, when she did, they were mostly false alarms. The monitor would tell me London’s breathing at 2 breaths per minute, but her oxygenation was at 99. Note: just get clarification from your nurses about the quirkiness of the particular monitor your child is hooked up to.

_BKP2265The most common noise we heard from our monitor is for desaturation, aka desat, meaning there is a low blood oxygen concentration. London struggled with chronic lung disease throughout her NICU stay, so she desated a lot. Some days the alarm seemed like it was always on and the nurse would have to come into our pod every five to ten minutes to silence the alarm or tweak London’s ventilator settings. Not as alarming as the brady beep, but the desat beep had a way to bore itself into my brain. I would here it in a song on the drive back home from the NICU. I would hear it in my sleep. I would hear it come from the TV. It sends a strong message that your child is not oxygenating like she should be. It does not let you forget and it never leaves your head as long as you have a baby in the NICU.

The last noise is really the only happy noise your baby’s monitor makes. It’s a gentle beep that notifies those around your child that she is oxygenating very well, with levels around 98-100. If this is the case, then the oxygen can be titrated down to see if your baby continues to oxygenate well on a lower flow. For us, this noise was the rarest, but toward the end of London’s NICU stay we did start to hear it a little more often.

The main takeaway from this post: the NICU monitors are always making noise. Some are deeply alarming and others you shrug off after a few weeks. How do I know this? Because after a while the only alarm that could wake me up out of a little nap in London’s pod was the brady beep. In fact, the other noises can lull you into a little nap when you are stretched out in the recliner next to your baby’s pod. And then, BAM, a brady alarm makes sure you don’t get too comfortable.

Super Bowl Night in the NICU

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*For the most part I am trying to post about the NICU events chronologically to avoid confusion, but I have skipped ahead in writing about the day Kate and I came home from the hospital. Now, I’m jumping back a day, to the stretch of time all three of us were still spending our nights at the hospital.

Kate's mom and Kate's sister (Angela) pose next to London's isolette before they depart.

Kate’s mom and Kate’s sister, Angela (at right) pose next to London’s isolette before they depart.

It was Super Bowl Sunday. February 2, 2014. It was also the first day London got an echocardiogram (or echo). It revealed that she had a PDA, aka a patent ductus arteriosus, which the NIH describes as this, “The ductus arteriosus is a blood vessel that allows blood to go around the baby’s lungs before birth. Soon after the infant is born and the lungs fill with air, the ductus arteriosus is no longer needed. It usually closes in a couple of days after birth. If the vessel doesn’t close, it is referred to as a PDA.”

PDAs are not an unusual condition for preemies to have. Girls are more likely to have them as well. Sometimes the PDA naturally closes and other times drugs are necessary to encourage closure. If the PDA is large and resisting drug treatment then surgery is an option. The staff at the hospital was very good in describing the treatment options we had and the prognosis. We decided to treat it with drugs, which are similar to ibuprofen, hoping it would seal up on its own. That same day we decided to stay in the hospital one more night. We loved being just steps from London. Going home didn’t mean we would be so far away, but for one more night we could be across the hall.

Kate’s family left this day as well, but Kendra stayed an extra day. With London resting well, it was time to for

Hanging with London during the Super Bowl.

Hanging with London during the Super Bowl.

me to go home and prep for the game. I brought back bean dip and smuggled in a couple of beers for myself and a cosmo I made for Kate, the first martini she had after giving birth to London. There was also a bottle of Prosecco. Sadly, smuggling the drinks into the room was more exciting than the Super Bowl itself. I knew it was just the first snap of the game, but I had a gut feeling the Broncos were screwed. From there, things just sort of went downhill. I held on until halftime, but then I wandered over to London’s room and just looked at her, this is something you do a lot of when your kid is in the NICU. Sometimes it is all that you can do. Stand and stare. Worry. Marvel. Pray. Take pictures, like I did that night. Try to let them know you are there, but at the same time wonder if it is really making a difference. To just be present in body, mind, and soul is the best thing you can do for your baby at this stage, but it is the most exhausting thing I have ever done. More on that and the PDA to come…

 

Hospital on the Horizon

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Before London, I never really liked being in a hospital for any reason. Even if I was there for a flu shot or to pick Kate up from work. I only saw hospitals through a narrow, ignorant lens. I thought they were places where sick people go to stay for a while and at the end of their stay those lucky enough to leave are still sick or don’t know why they are sick. Those without the luck, arrive at a hospital and stay there until their death. This is a morbid way to think about a place designed to get you better, but I had this view for a couple reasons.

When your spouse works in a hospital they tend to convey some sad stories to you about things they have seen at the hospital. The stories could be worse depending on what unit they work in. For example, stories from the outpatient wing probably aren’t going to be as horrific as some from oncology. Well, I used to hear some pretty sad stories and they were very difficult to hear. I did not hear enough of the good stories because I always found myself thinking, how could you work at a place like that? How depressing. So when I would go into a hospital I would maybe just choose to see the very sick and that made hospitals nearly impossible to be in.

And then I got very sick in 2007…The short story about that experience is this. I had a bunch of weird things happening to me, headaches, Bells Palsy, partial, but temporary hearing loss in one ear, and iritis were among the most troubling issues. I had a CT, an MRI, X-rays, blood draws of all sorts, and I spoke with a lot of doctors and specialists. I never received a diagnosis. I got better, but I could not attribute that to treatment I received at a hospital, except for the steroids for the Bells Palsy and later for the iritis. I probably had a virus of some sort that was working its way through my body. Doctors never knew when it would be over. They couldn’t tell me what it was. And all those tests…negative. I had a big scare and I felt like it was just dumb luck that I got better, when really my body finally overcame whatever serious bug was screwing everything up.

My opinion of hospitals changed very quickly in January. The morbid thoughts were, for the most part gone. Of course I worried for the health of my wife and daughter, but for the first time the hospital was no longer a place where you go to die. It was a place of healing, of miracles. It was where you went to live. Even the sight of the building became a comfort to me. This particular hospital is huge and easy to see from many parts of Denver and so, when I wasn’t at the hospital with London, I could often look to the horizon and see her home and know that she was surrounded by the most professional and loving staff I could have ever dreamed of. This was our family’s fortress now. Not all rooms in it have a happy story to tell. Hope is sometimes scarce in this place, but I knew of an OR tucked away on the fourth floor where not just lives were saved, but dreams, hopes, and a future were salvaged because of a hospital. I will never think of them the same way.

Letter to London On My 31st Birthday, Her Day 4

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Dear London,

You will remain for the rest of my life, the best birthday gift I have received. I did not expect to become a dad at 30. I thought I had a few more months, a little more time to prepare for your arrival. IMG_2967

On this birthday, your mom and I checked out of the hospital. It was extraordinarily tough leaving there without you, but getting home did make us smile. We can’t wait to bring you here. Aunt Kendra cleaned up the entire house. There was a giant balloon that said, “Baby Girl!” (a note from the present day: the baby girl balloon was still aloft, but slightly deflated, three months later when we finally disposed of it) and there were two smaller balloons that read, “Happy Birthday!” and “Welcome Home.”

Kendra left a birthday cake in the fridge for us too. It was about as good as a homecoming could have been without you there.

Your  mom and I were very tired so we fell right asleep for a nap before Nana and Papa arrived. Their arrival woke us up. I brought them upstairs aIMG_2968nd we all talked about you for a while in our room before we went downstairs for dinner. During our meal, I retold the story of your birth and what it was like seeing you for the first time.

After dinner, we took Nana and Papa to meet you. They instantly fell in love with you. Nana called you a miracle and of course they both shed tears. After a while we prayed over you, like we have been doing every night since you first arrived.

We eventually went home. What I want you to know about home on my birthday and, until the day you come home, is that it is just a shell where we eat and sleep. It is incomplete without you. Our hearts are always besides yours at the NICU. Here at home, we fall asleep trying to fill the void with videos and pictures of you. And then we dream of you. Sometimes we cannot sleep because of the worry at our core for you. As soon as we wake, you are our only concern. Our home’s potential is latent. We bought it just weeks ago with you in mind and it is only you who will make it what we so badly want it to be.

Goodnight London.

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 XII, Mom meets Daughter

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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.

We had to wait to go see London until Kate’s nurse came in and checked up on her. We had heard it was a male nurse and we were initially uncomfortable with that, but we were somewhat relieved once he came in and introduced himself and started to talk about what things he would look for. He was a dad himself. Very short hair, pretty much bald, and of average height with a warm demeanor. He was going to apply pressure to Kate’s stomach to feel for the top of the uterus. He would also check for blood coming out of Kate, which so soon after the C-section was completely normal. He would also handle the catheter and switch out the bag if full. He did all that and I thought he did an exceptional job. The uncomfortable feeling was gone and we were just minutes away from getting to go see London together for the first time.

The nurse and I helped Kate into the wheelchair. It was a very slow process, but the nurse seemed impressed by Kate’s progress, having been stitched up just four hours earlier. Once Kate was ready to roll, we were off.

I knew Kate would be happy to see London for the first time, but I was a bit nervous, hoping she wouldn’t break down. There was absolutely nothing I could say to Kate to prepare her for the sight of her daughter.

As we arrived at London’s isolette, Kate reached out to delicately put her finger in London’s hand and she whispered her very first words to London, “Hi, baby girl.” That was all she got out before we both were tearing up and looking on London with wonder and fear, a combination of feelings that is right at home in the NICU.

After some time, we were composed enough for a picture, our first family portrait. I handed my iPhone over to Megan and she captured the moment. It was 8:58 in the morning. London is sprawled out in the foreground. The top of her isolette is popped open. ThereIMG_2912 are tubes of varying widths coming out of her and wandering all over her tiny little bed. The white sticker on her right cheek is visible (it’s holding her endotracheal tube in place). Kate is right behind London, with her right index finger in London’s right hand. Kate is still in a hospital gown and has a blue bag on her lap in case she loses her breakfast. I am crouched behind Kate with my left arm resting on the back of the wheelchair. We both have masks on, but you can tell we are beaming behind them. Kate’s eyes are squinty, a tell that she has a huge smile on her face. In the background, over Kate’s left shoulder, you can see some nurses, who were strangers then, but who are nearly family now.

We weren’t with London that long before we had to get Kate back and comfortable in bed. We still hadn’t slept at all. Resting at this point was very important for Kate’s recovery. Shortly after we left London’s side, we shared that family portrait with family and then on Instagram and Facebook. And now, here.

London’s Birth: Part XI, Changing a diaper on a two-pound baby

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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.

While in the waiting room a doctor came in to talk with us about London’s condition. She sounded positive, being clear to us about what our expectations should be. We had to stay there for a while until Kate’s room was ready. When it was time, I helped push her bed over to the new room with nurse Amy, from earlier in the evening. We were on the fourth floor, facing south over the main entrance to the hospital. Kate was a little disappointed we didn’t have a mountain view. If you looked off to the right you could see the mountains bending southward, but it wasn’t very majestic like it would have been with an unobstructed view west.

I was able to go be with London once more before Kate was ready to head over there. That’s when I met nurse Megan and the new employee she was training, Laura. They were immediately helpful and gave me so much information I couldn’t keep track of it all. They pointed to line after line telling me what it was and using acronyms that I quickly forgot. “This is where she is getting her TPN.” “This is the PICC line.”

London was in her isolette, which was ridiculously hot and humid inside. Megan started to tell me about these things called “cares.” They are at certain times of the day, every four hours to be exact, and that is when we would take London’s temperature, change her diaper, listen to her, poke and prod and make sure she is doing well. Megan and Laura were just about to start and asked me if I wanted to jump in and take her temperature and change her diaper. Megan emphasized that if I was not ready, she could do it this time. This surprised me, but I did not take her up on that offer, I said, “I can do it. Just coach me through it.”

They showed me the one button on the isolette I was allowed to touch. It activated a heat shield so when I opened the little openings for my arms to go into the isolette it did not cool off in there. They gave me a thermometer and told me that I will take her temp in her armpit. They showed me how by placing the thermometer and holding her arm against the side of her chest. I put my hands in the isolette and immediately noticed the jungle like feel to the air in there. I had not touched London yet. I was so afraid. I felt like a simple touch of her arm would snap it. Because I felt that way I was much too gentle with her and failed to get a good temp reading. I didn’t have the thermometer truly in her armpit. The nurses corrected me and told me I could be a little firmer with her. They were right. London was so small and looked extremely fragile, but I could apply enough pressure to get the job done correctly without causing her any harm.

I had changed diapers before, but never on a two-pound baby in an isolette with really low arm openings for someone who is 6’9” and with intimidating wires and tubes everywhere. At this stage, London’s skin was so delicate that I could only touch and release with my hand or finger. I could not rub her skin because of the risk of it breaking and sloughing off. Yeah, that was easy to remember. Do not rub your daughter’s skin off. Check.

My hands are not monstrously big, but they fit my frame, so one of them could completely cover London’s body. During the diaper change I was using giant tools for a micro job, but because of the nurse’s help I changed London’s diaper. The nurse said, “Once you learn to change a diaper on a preemie like this, every diaper will seem easy.” I knew she had a point. This was harder and slower going than any diaper change I had ever done or thought I would ever have to do. Megan wrapped up the rest of London’s cares. I walked back to Kate’s room, thankful that when I returned to London’s side I would be with her mom and we would all be together for the first time.

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.