NICU

Dread and Disappearing

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If you know me, you know that I love movies and, to complement that love of movies, I listen to and also love The Big Picture, the esteemed podcast from The Ringer with hosts Sean Fennessey and Amanda Dobbins. I do not miss an episode and, on occasion, I even listen to them discuss a movie that I have not seen. In fact, that frequently happens because getting to the theater is hard. I really have to carve out time, arrange for someone to watch the kids, and then, hope that what I want to see has not left theaters during the weeks it took me to secure said viewing time.

I was listening to such an episode (one in which the hosts discuss a movie I haven’t seen) in October, when Sean interviewed the writer and director of If I Had Legs I’d Kick You, Mary Bronstein. To help out, here’s the one sentence synopsis from IMDB, “While trying to manage her own life and career, a woman on the verge of a breakdown must cope with her daughter’s illness, an absent husband, a missing person, and an unusual relationship with her therapist.” The connection I feel to this movie (I still haven’t seen it!) and its writer/director is that Bronstein’s daughter had a serious illness and Bronstein played caregiver for a long, hard time. Okay, let’s go to the interview.

Right out of the blocks, Sean asks, “Do you remember the exact day you began writing it?”

Bronstein gives a long, eloquent answer, but one thing she says hits me so hard, some truth that I had felt before I listened to this pod, but a truth that was really good to hear someone else utter, especially an artist. Bronstein answers that she had a “sense of existential dread that I couldn’t put my finger on and, at first, I thought it was because the situation I was in, like, will she get better? What will happen? Then I realized it wasn’t that at all. It was the feeling that I felt like I was disappearing, because everything, every part of my being was put into taking care of her and making sure that she was gonna get better and we could get back to New York and get back to normal. But then I realized, oh wait, she is gonna get better and we are going to go back to New York and our home and it is going to go back to…normal. But like what then? What then? Because I’ve been in this state now for so long…in this caretaking role for so long it’s been my whole life, what then? What’s gonna happen?…In a very literal sense I felt myself disappearing, my being, my self, and I started writing…in that state.”

That’s the quote. And if you’ve been a caretaker for someone before, especially of a child with some disease, disorder, or illness, you know that regardless of the severity of that disease, it can be all consuming and it can completely suffocate the will you have to do anything else with your time, if you’re lucky enough to have any time leftover.

Although I didn’t realize it then, my time as a caretaker started nearly 12 years ago when my daughter was born at 26 weeks. She had, at times, a very rough NICU stay that lasted 109 days. After discharge, we were back at the hospital several times a week for appointments. That lasted months. Years later, we still had a lot of appointments, assessments, and scares. Then after teachers expressed concern, more assessments, a diagnosis of Autism Spectrum Disorder, Level 1, and new, ASD-focused, home therapy for years. Then another diagnosis, this time of ADHD, a common dance partner of ASD. Then individualized education program (IEP) meetings. Then 504 (not quite as accommodating as an IEP) meetings. Then more worry. Then back to an IEP.

All that time, much of my interests were pushed aside, as happens to any present parent, and I let worry for my daughter and her future absolutely break down hope I had for myself, belief that I would get to do anything else. I felt myself disappearing. There were fits and starts with writing, but I have gone years without it. Actually, the only thing that I have consistently practiced for the last 12 years, outside of managing the house and taking care of the kids, is running. That’s the one thing I have held fast to. I guess that’s why it became an obsession of mine, which if you don’t know, we haven’t spent much time together in the last decade. But trust me, if you stick around here for any length now, you’ll know.

Anyway, back to myself disappearing, dissolving into worry and insignificance. I started to hear a voice, my voice, and it has been urging me to make sure this part of me, the one that has always loved the written word, both reading and writing it, to make sure that part does not die like all the other parts. To save that part, that’s the end game, if you will. What will come of it? I am not sure, nor do I want to dwell on that either. I know it’s a big part of me and one worth saving, one that makes me a better person in my other roles of husband, dad, and son. But you’re still gonna get running posts and don’t forget movies. I love movies.

Welcome to the Pump House: Adventures in Fatherhood and Breast Milk Management

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A version of this post appeared on my blog years ago when London wasn’t even a year old. But I just tweaked it a bit, slimmed it down , and added here and there. I think it’s better now. Here it is…

Never in my wildest dreams, as I prepared for fatherhood, did I think I was going to spend so much time with lactation nurses, reviewing the intricacies of hand expressing (including motions), analyzing breast milk volumes, discussing engorgement, and just how much breast milk one could fit in a chest freezer.

A few hours prior to my meeting with lactation consultants, thinking there were three more months to learn these things, I didn’t even know lactation nurses existed. I knew that some babies were born prematurely, but I didn’t know my wife’s breast milk would still come in just as early as our daughter wanted out at 26 weeks gestation.

So it was that our 109-day stay in the neonatal intensive care unit (NICU) started with a crash course in breast milk. Within those first days of life for my daughter (London), my wife (Kate) and I spoke at great length with not just one lactation nurse, but several of them about breast milk and breasts, starting with a nurse asking my wife if she was going to pump breastmilk. Partly due to the trauma of the last 24 hours, and partly due to my complete lack of knowledge about breastfeeding, I had not thought a bit about breast milk or pumping. Kate was of a similar mindset at that particular moment, but we were both satisfied to know that there was a good chance Kate’s milk would come in. The early drops of colostrum, the nutrient-dense milk first released by the mammary glands, often come in shortly after the placenta detaches from the uterine wall, no matter the gestational age.

A couple of hours later a lactation nurse wheeled into our room something that looked like a medieval torture device. They were calling it the Symphony. They hooked Kate up to it and it hummed and sucked for 18 minutes. At the end of that first session, we could just barely make out two milliliters of colostrum. A few hours later Kate produced 2.6ml and then later that night 3.8ml. The next day, January 31, marked Kate’s first 24 hours of pumping. She produced 32.6ml that day, or 1.1 ounce. The lactation team handed us a log with the direction that we were to write down when Kate pumped, for how long, and the total volume.

We then received a DVD to watch, which would apparently help Kate get more milk by hand expressing and provide tips to alleviate the pain of engorgement. We were to watch it and return it to the NICU team afterwards. That same day, we popped the DVD into my laptop to watch some before going to bed. One minute into this educational video, the biggest breast and nipple either of us had seen appeared on screen. Kate laughed so hard she began to worry she might injure herself being only two days clear of a C-section. Everything hurt. If we continued watching, we put Kate’s health at risk. I slammed the laptop shut. Tears ran down our cheeks from laughing so hard.

Who knows who is responsible for making this particular lactation video, but may I make one small suggestion on behalf of my wife and all women who have recently had C-sections? Great. Do not make the first breasts on the video also be the largest breasts known to mankind. They should not be comically large, needing 3-4 hands to get them under control. In fact, this video is a danger to new mothers everywhere, they might literally bust open their gut laughing from it, like we almost did.

Thus, it fell on me to watch the lactation video alone, gleaning from it any helpful tips and then sharing them with Kate. She was impressed. It wasn’t like Kate’s breast milk volumes needed any help. Not long after London was born, I was spending part of everyday rearranging containers of breast milk in the chest freezer in the basement—the chest freezer we needed to buy solely to store breast milk. Kate and I would joke that I knew more about hand expressing breast milk than she did so I should print up some business cards and walk around the NICU offering my services to anyone who needed them. Hand Expressions by Bryce. Simple and to the point.

By day of life 57 for our little girl, Kate was producing 1,863ml a day, or 63oz of breast milk. To put that in perspective, London was fed a total of 800ml on day 57, the most she had ever consumed in one day. In fact, it took London a long time to drink as much milk in one day as Kate got from one 20-minute pump. A point was reached where no amount of rearranging the breast milk in the freezer would make room for more. I picked up a second chest freezer at Costco and Kate started to fill that, too.

For the months London was in the NICU we rented a Symphony pump, which at the time retailed for $1500-2500, and kept it in our bedroom. We started to call it the pump house. When at home, Kate disappeared every three to four hours to spend some quality time with the Symphony. As all moms know that schedule wreaks havoc on sleep and work responsibilities, but Kate did an excellent job. I did what I could by waking with her every time throughout the night, assisting in bottling of the milk, labeling and recording volumes, washing pump parts, and then delivering milk to the freezers in the basement. So, at our house, at least two times a night, Netflix and chill was swapped out for Netflix and pump.

As Kate tapered off the pump, we were just filling up the second chest freezer and the lactation nurses understood why Kate was putting an end to pumping. She had developed a reputation in the NICU as a super producer. At London’s discharge, on May 19th, 109 days after she was born, the NICU staff wrote messages to us. One of our favorites from the lactation team wrote, “Your mom was a rock star with pumping. She could have fed three babies in the NICU!”

Next week, London will be six-months-old and I can thaw breast milk from three months back. And right now it’s lunch time for the little girl, to the chest freezer I go.

Going Wireless

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Nowadays, everything is going wireless. We have wireless video game controllers (which I still am not used to), wireless watches that answer phone calls (not perfected yet), wireless headphones, hands-free calling, and voice-activated phones. I remember being really impressed with wireless phones in the home.

Here at the Perica household we are going to keep the trend alive.

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We are going to have a wireless baby. It’s true. I hear it is all the rage. We are late to the trend, but we were afraid to be early adopters of this newfangled technology.

Though going wireless will give us a freedom we have never had with a newborn, it will not be without sacrifice. For example, the option of being able to pump a meal into your newborn at just the right time regardless of whether they are awake to eat is truly handy. The food just pumps right out of an IV bag on a hospital rod in your living room and it goes right into your baby’s stomach via a tube that you get to insert yourself and feed down to the stomach.

Also nice, was knowing my baby’s heart rate and oxygen saturation every second of the night by connecting more wires to the baby. If ever there was a slight hiccup, we would be notified in the middle of our sleep by a fire alarm basically.

Lastly, there was the convenience of forcing oxygen into my baby. With oxygen tanks on every floor of my house an_BKP2796d oxygen tanks in the car, in the stroller, in my backpack, I always knew the baby was getting oxygen. In the rare case my baby looked a little winded or was turning blue, all I had to do was walk over to the giant oxygen tank in my living room and let her loose up to 1/4 flow. Baby turns the right color, but falls asleep right before it is dinner time. Not to worry. This is why there is a nasogastric tube, feeding at the right time is always an option.

Now that people have been having wireless babies for many years, we feel comfortable moving onto this post-modern way of having a newborn. We are happy, blessed, and excited to welcome a wireless baby into our family in the very near future.

Published

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What seems like two years ago, I submitted a short essay to the Denver Post. To my delight, I heard back from them. They wrote that my essay was being considered for online publication as a guest commentary. A couple months passed and I hadn’t heard anything from them so I emailed the Post again. They wrote back, saying that my essay was still in the queue and I would be notified if it was published. I maintained my optimism for about one more month and then, like all writers often do, I gave up all hope. I started wearing Crocs, drinking Folgers, and bought tighty whities in bulk at Costco.

Skip ahead to 2017 and I am half-heartedly looking for writing gigs when I do a quick self Google. I was curious if any of my writing was available on the web still. One of the top results was a Denver Post page titled, “Guest Commentary: Tiny hands change everything.” I clicked on the link. I confirmed that it was my work and noted the date. July 17, 2015. UPDATED April 24, 2016.

The photo with the commentary is of an adult hand, one finger of which is grasped by a tiny baby. This is not a photo of hands I know. I could have provided a better photo if they had told me I was going to be published.

Like this one…

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And then I read the words. Thoughtful, touching, but flawed. Like nearly everything I write, I only thought it was decent or, at best, good, at the time I wrote it. Now, almost two years later, it strikes me as insufficient, short, even a little cheesy. I would have been happier to link to it back in July of 2015. Linking to it now is anticlimactic. It feels like I am sharing a draft with you. Nonetheless, for it to appear on the Denver Post‘s website and for me to not share that on this blog does not feel right. Here is the article.

Have a great weekend.

 

Prayers & the People

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While London was in the NICU, I listened to Coldplay’s Ghost Stories religiously. I spent a lot of time meditating on one refrain in a particular song called “Magic.” The lyrics read:

And if you were to ask me
After all that we’ve been through
“Still believe in magic?”
Well yes, I do
Oh yes, I do
Oh yes, I do
Oh yes, I do
Of course I do

Although when I thought about the lyrics, I would replace the word “magic” with the word “prayer.” And I would ask myself over and over again, “Still believe in prayer?” With all my heart I wanted to answer with an earnest, “Yes,” and for a while I did not have an answer.

Why couldn’t I find that earnest “Yes”? I thought about that every day while London was in the hospital and nearly every day since. After all that thinking, I am able to point to a number of reasons.

I have written on here before that not all NICU stories have happy endings. It may come as no surprise, but while we were in the NICU we were witnesses to some sad stories. Within two weeks of London’s birth, the baby in the next pod over died. I remember hearing some of the father’s last words to his daughter and then needing to step behind our curtain because I couldn’t hold back tears.

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Praying over London. What else?

Throughout London’s NICU experience we had a tremendous number of people praying for her. We were praying for her. And when we would receive good news concerning London’s health, people would be quick to thank Jesus.

I know there were people praying for that baby next-door. But when she died, I don’t know if people were talking about how much they prayed for her. When prayers are answered, people are quick to heap praise on God, but all too often God doesn’t enter the conversation when prayers aren’t answered. There is just a deep sense of loss (in the case mentioned above, loss of a child) and betrayal.

It is the absence of God in conversation following something like a loss of a child, whose survival was clearly being prayed for, that really grates across my soul. And as I let it grate more and more on me, doubt about the fate of my own child crept into my thoughts. Doubt about the ability of prayer to reduce swelling in London’s brain. Doubt about the ability of prayer to make one medication work better than the next. Doubt about the ability of prayer to make London’s lungs flourish.

Yet, I prayed, even though what I had seen in the NICU was doing its best to give me a cynical attitude toward God’s ability to give my daughter a fighting chance. But as I stood next to Kate and watched London seize up, turn blue from head to toe, and watched a team of doctors rush over to her bedside, prayer was the only thing I could hold onto despite clinging to Kate. I desperately prayed over and over, “Don’t let my daughter die.”

Again and again, I was exposed to suffering. Much of the time it was parental suffering, the kind you would expect parents to go through when their baby weighs two pounds. And, at times, it was the raw exposure to parents suffering the death of a newborn, as mentioned above.

In a new way, I was becoming aware of the fragility of my own faith. I had reached the bottom of my soul and I had expected to bounce back and come out better than ever, but I had gone crashing through it, revealing new limits to understanding and faith. This surprised me because I had not lost anyone. Many people endure far worse before they reach the point I reached. However we get there though, we often discover the same thing:

…Suffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there.

Lack of control. I had felt it before in my life, but not to this degree so it was easy to say, well, if I don’t have control, and the nurses don’t have control, and the doctors with all their tricks and knowledge don’t have control, then nothing can have control over this.

But doubt is a two-way street. As I doubted in prayer’s ability to heal every last weak and broken thing in my daughter’s body, I also doubted my newfound doubt. I didn’t know for sure that prayer didn’t work. I have prayed all my life for all sorts of things. Some prayers were answered. Some were not. A voice in my head kept saying, why stop now? Because I was afraid, afraid of not having this prayer answered exactly the way I wanted it to be answered. That felt really selfish. It is selfish. But I had prayed this long, I wasn’t going to stop when it came to praying for my daughter’s health.

I guess what tragedy does to you, or, in our case, what a really long stay in the NICU can do to you, is to remind you, just in case you have forgotten, that you are not in control. You never were, despite how good things were going for you. And, you never will be. I felt like this left me with two options. One, surrender to God and put my faith in him because I have discovered how little control (read none) all of us have. Or two, abandon the idea of a God who hears our prayers and can intervene to answer them.

Days, weeks, months, and eventually a year passed, during which God eliminated option two. I had just kept praying. I would often express to God that I really don’t know if you (God) can help with this, because there are many more people in this world that need more help than my daughter does, but somewhere along the way, can you do this one thing for my daughter? Again and again, the answer has been yes. I don’t know why, exactly, my prayers have been answered while the prayers of others had clearly not been. That’s part of the mystery. Part of the faith. I don’t have the answers. But for me, one answer had changed.

It was over a year after London came home from the hospital when I was again listening to Coldplay’s “Magic” and thinking about it all–faith, mysterious, confusing faith, love, my daughter, who I know is a miracle, and my little family–when I finally could sing the end of the song and mean it.
After all that we’ve been through
“Still believe in prayer?”
Well yes, I do
Oh yes, I do
Oh yes, I do
Oh yes, I do
Of course I do

*Block quote about suffering is from David Brooks’ column in the NY Times, “What Suffering Does.”

How to Help a NICU Parent

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

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

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

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

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

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

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

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

*All names in this post have been changed. 

Pictures of Preemies

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London. 8 Hours Old.

A Canadian photographer and father to two preemies, Red Méthot, has a popular project in which he photographs preemies holding their own baby pictures. I first saw this on Facebook and thought I should share it here. Follow this link to the Unworthy post.

This link leads to Red’s Facebook page, where you can view all of his photos in this project.

Particularly of note for me, were the two preemies photographed who are still on oxygen as toddlers. One of them was born at 23 weeks and the other at 26 weeks. Both boys. Kate and I are tremendously blessed that London, born at 26 weeks, is now 21 months old and approaching her one year anniversary of being free of oxygen support. Here’s hoping the two boys pictured with oxygen can lose that cannula for good sometime soon!

Parents on the NICU and their PTSD

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Over a month ago, I read and posted about an article in the New York Times about 22 weeks gestational age being the new definition of viability (for some doctors). In the sidebar I noticed another article under “related.” Its title: For Parents on NICU, Trauma May Last. As soon as I was done reading about the viability of 22 weekers I clicked over and read about PTSD in NICU parents, which I had blogged about once already.

I have not read a more accurate article about parents dealing with the NICU. The first parent’s story is more stressful and scary than ours was. For example, I never got to the point where I was sleeping with my shoes on, but on more than one occasion I expected the hospital to call with horrible news. And I was and can still be easy to anger as a direct result from our NICU experience. I mentioned that back in October as well.

This NY Times article was first published in 2009, citing a new (for then) study about PTSD in NICU parents:

A new study from Stanford University School of Medicine, published in the journal Psychosomatics, followed 18 such parents, both men and women. After four months, three had diagnoses of P.T.S.D. and seven were considered at high risk for the disorder.

In another study, researchers from Duke University interviewed parents six months after their baby’s due date and scored them on three post-traumatic stress symptoms: avoidance, hyperarousal, and flashbacks or nightmares. Of the 30 parents, 29 had two or three of the symptoms, and 16 had all three.

One of the NICU parents quoted in the article hits the nail on the head:

“The NICU was very much like a war zone, with the alarms, the noises, and death and sickness,” Ms. Roscoe said. “You don’t know who’s going to die and who will go home healthy.”

I haven’t said it better myself. As a parent, even after months in the NICU, I would find myself wondering if we were ever going to make it out whole, meaning all three of us. Perhaps the most revealing statistic shared in the article is this:

The Stanford study found that although none of the fathers experienced acute stress symptoms while their child was in the NICU, they actually had higher rates of post-traumatic stress than the mothers when they were followed up later. “At four months, 33 percent of fathers and 9 percent of mothers had P.T.S.D.,” Dr. Shaw said.

It’s easy to picture stoic fathers in the NICU, but what most of them are really doing is repressing so much intense fear and anguish that once the drawn-out trauma of their child’s NICU stay is over they burst. I was stoic from time to time, but I certainly was not afraid to show emotion during London’s stay in the hospital. Crying in front of nurses was not something I was above. This helped.

One NICU survivor shares this in the NYT article:

In her book, Ms. Forman wrote: “From the moment my twins were born, I saw potential for tragedy wherever I turned. It would be years before I stopped thinking that way.”

This is probably what I struggle with the most now. It’s beyond worrying, it’s an all-consuming conviction that something horrible is going to happen. Prior to my trip to DC, I had a really hard time shaking the feeling that I wasn’t going to see my family again, I wasn’t going to make it back from DC, or maybe I was never going to make it there in the first place. Before the NICU, I was not wired to think this way, but now a part of me is. The other part is fighting for balance. Like Ms. Forman, maybe it will be years before hope and the safety I knew become my heading once again.

One Year Ago Today, We Left the NICU

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

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

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

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

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Today. Playing with her Little People farm.

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

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

Surviving at 22 Weeks

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“Do you want us to save your baby?”

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London at one-day old.

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

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

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

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

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

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

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

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

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

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

 

Another Day, Another Echo

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

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

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

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

The Story of London’s Birth

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This picture…because it’s Cinco de Mayo!

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

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

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

Turning One Again

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

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

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

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May 4, 2014.

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

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

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

Happy Birthday again, London!

London’s First Cry

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

Graduating to a Bottle

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Last week I uploaded a video of Kate and I feeding London 1 ml of milk from a very tiny syringe. Though it was a long, long time until London could move on up to a bottle and I took many videos between that syringe and the first bottle, I wanted to skip to a video of an early bottle feeding.

In this video nurse Eileen is giving London a bottle. It was during a time of London’s NICU stay in which she was particularly stubborn about wanting to drink at all. Sometimes she was a champ, drinking her whole feed, but at other times she drank 5 ml and looked at us like, what? I’m done. Just gavage the rest and get on with it.

I think I had been trying to feed London and handed her off to Eileen, hoping London would cooperate a little more. She does in the video at least, but I can’t remember if she finished that particular bottle. Most of the time she did not. Thus, when it was time for London’s NICU discharge she came home with an NG tube.

One thing you see here in the video of London is the pacing that we had to do for quite a long time before London had the energy and the skill to take a constant flow from the bottle without choking and also learning how to breath properly during feeding. We would give London some flow from the bottle, for three seconds about, and then tilt the bottle back and let her catch her breath and finish swallowing the milk. It seems simple enough, but you also had to keep her body tilted to the side as well. And after that, you had better familiarize yourself with London’s cues…or else a nurse might give you heck from the other side of the pod, “And dad’s just choking the baby over there.”

When my sister visited London she was eager to give her a bottle. I felt bad, but I just had to say no. I went on to explain that it wasn’t like giving a full-term baby a bottle, at least not yet. After watching me feed London, my sister acknowledged that it looked difficult. I’m glad she did. At that point, I was only willing to hand London to someone other than Kate or a nurse if all they were going to do was sit with her.

I remember the day I discovered that I did not have to pace London’s bottle anymore. We were waiting for a ROP exam, and she was a little moody so I brought out a bottle and I tilted it up so the milk started flowing and I did not tilt it back down again until the bottle was empty. I was astonished and looked from the bottle to London’s happy, chubby face and back to the bottle. I knew we had reached a milestone in London’s feeding progress. But back down to earth we came, for the ROP exam was next.

March for Babies

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Denver’s City Park during the 2015 March for Babies.

This last weekend we walked with London in our family’s first March of Dimes event. Last year we were still in the NICU when it took place and prior to that, I had no clue what March of Dimes supports. The organization exists to help moms have a full-term pregnancy. And if that doesn’t happen, then they provide help, support, and resources to preemies and their parents.

We had a hectic week so we actually thought about not going to Denver’s City Park to participate in the walk this year, but we were both thankful we did. We even got to walk with one of London’s primary NICU nurses. In addition to seeing some other nurses who took care of London, just being in the presence of more than a thousand other preemies and their parents was empowering…even if we didn’t strike up a conversation with any of them.

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London and Kate wearing purple in support of preemies and ending premature birth.

The 5k walk meandered through City Park. We started behind many slower walkers and passed most of them by off-roading it in the grass. Toward the end, we were out in front with other fast walkers scattered about. We slowed down a bit as we neared the stage of the walk where posters were placed in the grass showing pictures of preemies at their birth and then a few years later, strong, energetic, and healthy. The posters shared the gestational age at birth and sometimes the weight. As we walked by I glanced from poster to poster noting the gestational ages, “Born at 38 weeks…..Born at 25 weeks….Born at 40 weeks….Born at 33 weeks….Born too soon.” And then, a little later on, “Born at 19 weeks,” with a picture of impossibly small feet and a message of why the parents support March of Dimes, because no parents should have to suffer losing a baby.

When I saw the first “Born too soon,” I think I had a sharp intake of breath. It was a stark reminder that we were walking for the preemies who didn’t make it as well as those who have. We came scarily close to having a “Born too soon” baby. Whatever it was that set things in motion for Kate’s premature delivery, we will never know, but I am so glad things happened when they did and not 2+ weeks earlier. I usually don’t dwell on this what if?, but the walk made me think about it a little more than usual. To change my train of thought was easy this time. I just had to look up. I was surrounded by hope, happy endings, and amazingly supportive parents.

Early Smiles

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London’s early smiles were one of the first signs of how happy a baby she would become. At first I thought the flashes of a smile I saw were just the typical baby imitating the adult’s facial expressions, but by the time this video was taken on her two-month birthday I had changed my mind.

You can see London try to look up at me. The comfort of knowing that dad is holding her breaks through those hiccups and appears as a smile on her face. And then, back to hiccuping. Kate says, “She smiles a lot…”

She did then and she still does. She is constantly reminding me to be happy and then to stay happy. Even in those most frustrating moments of parenthood when I am in grumpy land and want to stay there, her joy cracks the scowl on my face and I surrender to her smile.

We are blessed and spoiled with such a happy baby, who continues to amaze the most weathered parents, grandparents, and great grandparents by her no-fuss, ebullient temperament.

Too Many Journals

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I would think twice about giving new parents a journal. Chances are, they already have three…at minimum.

They don’t need but one place to write their thoughts down about the expecting, the arrival, and the aftermath of their first child. We were lucky and probably only got about five journals, enough to record every minute of IMG_6093every day for the first three years.

Among people who journal, my devotion to it is moderate and, still, I am considerably disappointed by my lack of devotion to it. After all, it’s what writers do.

I’ve got a bookshelf of empty journals and I bet quite a few people can say the same, long before they have kids. For me, the site of an empty journal, which has been on my bookshelf for a decade, can be a consistent reminder of failure. (Note to self: move all empty or one-tenth-completed journals to box in basement.) Perhaps it’s the same with the people you are giving that journal too. Perhaps it’s not. But before you go ahead and give them that new-parent journal you better do a journal inventory of their bookshelves (in all rooms) and then assess whether these parents need more blank pages in their house.

If you do that assessment and you decide to still get a journal, I have a recommendation. It’s called Mom’s One Line A Day. It’s my favorite journal with the crappiest title. It offers six narrow lines of writing space for each day for five years. On each page you can see what you were doing on the same date in a five-year span. Now that’s a crapload of journaling, don’t get me wrong, but at six lines a day, even if your handwriting is small, it fills up fast.

Even with that knowledge, I fail to write in it half the days, but since Kate and I have used this journal for over a year now we have a considerable record of London’s first 15 months (nearly).

More momentous are some days than others, but I have found it helpful even to write down the seemingly mundane. Example: April 21, 2015 – 2 naps still. Read HP (book 6) out loud to you and some of A Game of Thrones. Outside in backyard you watched as I planted some herbs.

And right above that entry, I can see that on April 21, 2014, I wrote: Dad started reading The Hobbit to you today. You can’t truly follow the story but you know my voice and somehow you can tell when I start reading each day because you smile every time. It’s truly amazing.

So, if you must, pull the trigger on the Mom’s One Line A Day journal. It’s just the right dose of urging the parents to write about this spectacular time in their lives.

A 1 ml Bottle

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A long way from a full feeding, but a good start.

There were about two months of training from the day (February 27, 2014) I took this video of London until she could take a crack at an actual bottle. What an amazing step for her this was. A 1 ml syringe holds quite a bit more milk than that cotton swab we used to put in her mouth. We were thrilled in this moment.

I have posted very few videos on this blog so far, but I have so many I would eventually like to share and perhaps write about. Plus, on days I don’t have a chunk of time to write at length about raising London, sharing a video is a great option.

The Complicated Age of Preemies

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Home at last. London’s 4-month and 1-month birthday.

“How old is she?” The simplest of questions for parents of full-term babies to answer, but not so for parents of preemies because there are two answers for this one question.

At some point, a baby arrives so early that their actual age is going to be different from their developmental age. For example, my daughter, London, was born at 26 weeks gestational age, three months early. Her birthday is January 30, 2014. Her developmental birthday is May 4, 2014. This means London’s adjusted age is 11.5 months, even though she’s been with us for 14.5 months.

So how do I answer the question, “How old is she?” Well, sometimes I lie. If the person asking is asking because they are wondering why London is not walking and or talking because she’s the size of some two-year-olds, I lie and give them the adjusted age. By doing so, I direct the conversation toward the obvious and usually hear something like this: “My God, what a big baby.” I would much rather talk about how big my baby girl is than tell the person the truth and then have the conversation inevitably slide toward how London is, developmentally speaking, three months behind.

That said, I think most of the time I tell the truth and answer, “Almost 15 months,” because most people, whether they dwell on my answer or not, just aren’t going to say anything else. But I know, because I’ve seen it in their eyes, that when I say London’s real age some people look a little confused. I don’t know what they are thinking exactly, but it’s something along the lines of:

“Shouldn’t she look older?”

“She should be crawling by now.”

“She should be walking by now.”

“She should be talking more by now.”

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At seven and four-months old.

When I feel this reaction in people I know I could take the time and explain London’s two ages, but somehow just saying, “She was born three months early,” sounds cheap because I’m taking this huge, scary part of our lives and trivializing it in six words. Plus, the majority of people will not be able to comprehend what those six words truly mean. Getting stranger after stranger to comprehend that over and over again can be exhausting. I know, because I would make a casual effort to explain London’s prematurity to nearly everyone that asked. This was right after she came home from the NICU. Still on oxygen. Still rocking cheek patches. NG tube still snaking across her face. Understandably, those people who asked how old she was back then knew they were probably going to get something more than, “3 months.” But after a while, parents of preemies tire of going into the explanation thing. So, like parents of full-term babies we get back to basics with a simple, short answer, “Fourteen and a half months.”

Or am I going to say, “Eleven and a half months,” this time?

Oh hell, maybe I’ll just split the difference.

“Thirteen months.”