NICU

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.

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.

 

Emails and Poetry

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I rely on my parents to send me inspirational emails every so often. Yesterday, on my 33rd birthday, I received such an email. My mom encouraged me to go to a blog she regularly reads, to read a specific poem, and to listen to a hymn.

The blog is Barnstorming.

The poem found in this post is “Sure On This Shining Night” by James Agee

Sure on this shining night
Of star made shadows round,
Kindness must watch for me
This side the ground. 
The late year lies down the north.
All is healed, all is health.
High summer holds the earth. 
Hearts all whole.
Sure on this shining night I weep for wonder wand’ring far alone
Of shadows on the stars.
 ~James Agee
The hymn:
https://www.youtube.com/watch?v=Wio1hcuAAAk
I found the poem and the hymn deeply moving. I wrote my mom back and thought I’d share that note on here:

 

Truly loved that poem, but especially the song. It reminds me of the Christmas Night: Carols of the Nativity album from the Cambridge Singers. I found the song on iTunes and bought it already.

It made me think of the the 29th of January two years ago. As Kate and I went to bed on the 29th just a few days ago we quietly talked to each other about how London’s birthday celebration will always start on the night of the 29th because that’s when our miracle started. That night is so fresh and raw. Anytime I dwell on it I immediately start weeping, for several reasons, but maybe most of all because of what we have now, a boundless, healthy 2-year-old, which seemed to be outside the realm of possibility on that night two years ago and for many months afterward.
Kindness must watch for me
This side the ground.
Love you,
Bryce

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. 

What Lies Beneath

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London had just peed out her diaper. I thought it was odd since London had not peed out of her diaper in months. It could have just been that whoever changed her diaper last did not get a good seal.

I couldn’t quite believe it so I dabbed my hand on the big wet spot on London’s right pant leg. This was not some ordinary pee. This was some extremely sour-smelling stuff. As I brought my hand to my nose I finally realized it wasn’t pee.

Let me back up thirty minutes. We were all finishing dinner when London tooted. And by tooted, I mean it lasted five whole seconds. Then a few seconds later, another long toot. A few seconds after that, one more small blast. Kate and I looked at each other and sort of laughed, but London’s toot was not too extraordinary. She had done this before, but it had been a very long time.

We moved into the kitchen. Tonight, we kept London in the high chair as we cleaned the dishes. She kept snacking some, but seemed particularly moody so we decided to get her out of her high chair. And now, we are all caught up to the moment when it dawned on us that London, for only the second time since we brought her home from the NICU, had a poop blowout.

Luckily, we could tag team this. Kate grabbed some plastic bags. I carried London a good two feet out in front of me as we went upstairs to the bathroom. Once there we did a cursory examination of what was in front of us, deciding on how we were going to approach this horribly smelly and pasty mess.

To our benefit, London was wearing a onesie, which she just barely fit in, one that we weren’t particularly attached to. Scissors it is, but first we had to peel her pants off. As we did so little pieces of poo fell to the tiled floor. I could feel the extra weight of the pants as I moved them aside.

Once I returned to the bathroom with scissors, I held London and Kate cut down the back of the onesie and it fell to the ground inside the plastic bag London was standing on. Next, the diaper. A new bag for London to stand on. We just loosened the velcro-like straps of the diaper and let it fall off London. Pushing that mess aside, I grabbed the bathmat for London to lay on while Kate cleaned London up a little bit. She was not nearly clean enough to sit in a tub.

Kate asked, “What about the pants?”

“Oh, I’ll clean out what’s in there and I think they’ll be fine.” I picked them up, started to turn the oozy side inside out and immediately gave up. “They’re done for,” I said, as I plopped them into the plastic bag with London’s onesie.

Kate got to giving London a bath. I thought I’d check out the high chair because I knew it was going to be messy. I had seen some remnants in the seat before we went upstairs, but I didn’t really know how bad it was. First, I attacked it with bleach wipes, a lot of them. It looked good to me after that. Hold on, what’s beneath on the reverse side of the high chair cushion? Well, it was a brown stain bleeding out from the hole in the cushion, which part of the buckle slips through.

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Breakfast cereal, quesadilla, and a little bit of everything else.

I took the cushion off, flipped it over, and hit it with some more bleach wipes. The tag of the cushion read, “Do Not Wash. Hand Clean Only.” Throwing it in the washer seemed necessary at this point. Costco bleach wipes can only do so much. I scrubbed and scrubbed, but that sour smell was still there.

London was out of the tub by now and getting dressed, so I took the cushion upstairs, filled the tub with scalding water, and put in enough laundry detergent for several loads. I threw the cushion in the tub and made sure it was waterlogged before I left it there.

Back downstairs there was one last mess to clean up. I hadn’t fully cleaned London’s high chair in months so when I took the cushion off I discovered a pretty thick strip of food. I saw fossilized quesadilla, Crispix, Cheerios, and other food ground down to unrecognizable particles. I was going to vacuum it, but Kate told me to just dump it in the backyard. I lifted the chair up and out the backdoor and flipped it upside down once I was over the grass. Success. No vacuuming necessary and the lawn got fertilized with breakfast cereal.

The high chair cushion took two days to dry out in the backyard, but now London’s high chair is as clean as it was when we first got it. And, we only lost a onesie and some pants.

4,100 Pages of Harry Potter

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On July 16th, I read the last page of the Harry Potter books to London. It had taken me one year, two months, and four days to read that page and the previous 4,099 to her. Before May 12, 2014, I had never made an earnest attempt at even reading the first book. I had made more of an attempt at watching the movies, but had only made it through the first two and started and failed to finish the third movie on several occasions.

By the time I got to page 759 of Harry Potter and the Deathly Hallows, I felt I was finishing more than a book, but a saga of both literature and life. The obvious saga, that of Harry Potter’s journey from Four Privet Drive to the climactic duel with Lord Voldemort, and the less obvious saga, of London’s journey from her 102nd day in the NICU (the day I started the first book) to her fourteenth month at home, and her seventeenth month of life.

HP Books

Beautiful artwork on all the covers of these increasingly heavy books.

When I cracked open Harry Potter and the Sorcerer’s Stone it was an act of therapy. I did not know if I would finish all the books. I did not know if I would be able to read all of them to London. However, as time went by, it became clearer and clearer to me that I would finish the books, that London would hear every page of these books, and that just because we got out of the NICU did not mean the reading of the books ceased to be therapeutic.

In the beginning, it was easy to find time to read Harry Potter to London. I would place her on a pillow in my lap and could read for as long as I like really, assuming she was oxygenating well and in a comfortable position. When she left the NICU, I read several times a day to her, while she was on the floor making cooing noises, while she was falling asleep, and while she was taking a feeding from her NG tube. Later on, I only read to her as she fell asleep for naps. And a little later on from that, she stopped falling asleep if I was by her side reading Harry Potter. This coincided with her ability to pull to a standing position, so she would stand inside her crib and reach out for the pages of the book and get frustrated that she couldn’t grab them.

Eventually, I had to start reading Harry Potter to her when she was in the living room playing with toys. By this last stage, I knew that my voice comforted her. I could read a whole chapter and sometimes two while she played. I may have pushed the limit on July 16, when I read the last sixty pages to her in one sitting as she drained all the fun out of one toy to the next until she was clearly wondering why I had been reading to her for so long without any breaks.

On more than one occasion during the last several days of reading Harry Potter I choked up because it would dawn on me that I am almost done with the books, or I would remember in a flash how far London has come over these 4,100 pages, so incredibly far as you may know.

I take great joy in knowing that I will be able to read these books once again to London when she is older and able to follow the plot. Perhaps I won’t read every word aloud to her. She might take over. That is fine with me. I know I will always be reading with London.

*Special thanks to my wife’s family who let me borrow all of their pristine, hard cover, first edition Harry Potter books.

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!

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.

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.

Nana Remembers London’s Birth

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I’ve been meaning to share this comment since it was left on January 29th, when I wrote this post. The comment is from my mom, recalling the night and early morning of January 30, 2014.

I have been thinking all day about the phone ringing this night a year ago when we were sound asleep. Groggy and confused we listened to you tell us Kate was in distress, the docs were monitoring her and you would keep us posted. We hung up the phone, prayed through our tears thinking how can a baby live at 26 weeks? And we called her Grace not knowing you’d give her that moniker as her middle name. Your next call came to say Kate was about to undergo an emergency C-section. More tears and ongoing prayer. I remember my heart was beating so hard for what seemed like hours but you called again less than two hours later to say “London Grace” was here. Dozens of doctors and nurses were looking after her and Kate was in recovery. Then you asked, “Do you want to see a picture of her?” And so it began.

Still, I can’t read this without fighting back some tears. I had sort of forgotten that I asked my parents if they wanted to see a picture of their granddaughter. Such a question seems a little odd, but in the moment it was not an unusual precaution. The one picture I had of London at that point was graphic, for lack of a better word. She was vulnerable and the picture succeeded in showing that. I must have thought that maybe they would not want to see a picture of her until she stabilized some. Had they felt that way it would not have bothered me. Obviously, I was still protecting myself, but I also thought about protecting others and this was a way I tried.

I have known for a long time now that there was no protecting me or anyone else if things had gone horribly wrong during those first days. I was in shock and still under the illusion that I had any control over what happened next.

Baby in the NICU, Phone Always On

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I love having my phone on silent. Even though my phone is consistently within reach, having it on silent makes me feel a little more free of it and maybe even a little disconnected. So when my grandma called me this morning it was only by chance that I noticed the iPhone’s screen light up, catching it out of the corner of my eye.

Of course, when your phone is on silent there are missed phone calls and missed texts. You sacrifice a little instant communication, but you gain some uninterrupted down time from the phone. It has become habit for me to switch my phone to silent while I am winding down for the night. At some point the next day, usually, mid-morning, I’ll turn the ringer back on.

Switching my phone’s ringer on this morning after my talk with my grandma made me think of that first night Kate and I were back from the hospital after London’s birth. I had reached over to my phone on the nightstand and switched it to silent. That immediately felt like a dumb thing to do and it slowly dawned on me that as long as London is in the NICU, my phone will never be on silent. It will rarely be anywhere other than my pocket. Its volume will always be at least 3/4 of max.

For 109 days, I did not want my phone to ring because a call, I assumed, would be bad news. But for 109 days, it was also imperative that I never miss a call or a single text message. If it was the NICU calling, then I could not afford to miss whatever breaking news they had to tell me, no matter how dire it may have been. Nowadays, the smartphone is a natural accessory to our everyday lives and, while we were living out a hyper-alert and worried stage of our lives, it made sense to make sure all avenues of communication stayed open.

When London did come home, I vividly remember taking great pleasure in muting the ringer on my iPhone that first night. It was ceremonial. A little victory. And in the morning, a big victory, not having to hop in the car and drive to the hospital in order to see my daughter.

Have Preemie, Will Not Travel

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Oh, the places we’ve been since London was born.

From January 30, 2014 to May 19, 2014 I left Denver once, for a quick trip north to Fort Collins. I was there for six hours. Since London was born I have spent three days outside of the state, not too far away, in Green River, WY. It took me two minutes to draw on a map where I have been in the last 14 months.

Having a baby will naturally limit your geographical existence. Having a 26-weeker will completely shut your travel down. From what I have heard about other parents who had a very early baby, we have been ambitious in our reach across this relatively small map. I have heard of parents who will not take their baby outside the house but for walks. These parents have decided that taking their preemie to the grocery store, the shopping mall, or to Target, puts their preemie at too great a risk of getting seriously sick and going right back to the hospital. My family did not make it out of the NICU without receiving such advice, from a nurse nonetheless. We were blown away by the severity of such restrictions and quickly conferred with other nurses that we did not have to stay under house arrest with our preemie until flu season was over.

We have followed certain recommendations such as, do not fly anywhere with your baby until flu season ends. Locking baby inside an incredibly small area for two hours with 140 other strangers sounded like a really bad idea to us as well. Not flying anywhere for such a long time (our last flight was in mid-December 2013) has been incredibly weird and challenging, but also much better than having a very sick daughter back in the hospital.

The feeling has been similar to putting travel and adventure on probation for over a year. Localized adventure has still been possible and we have taken advantage of that with trips to Wyoming, Breckenridge (twice), Steamboat Springs, and Estes Park. If it wasn’t for weddings, I am not sure we would have made all those trips, but thank God for weddings because these short getaways have quenched at least a little bit of our thirst for travel.

Flu season is almost over. Besides the obvious, this means as a family we are free to move about the country. And again, weddings will be the catalyst of much of that travel, but instead of weekends in the Colorado mountains we will get a weekend in southern California and Nashville, with some excursions in between. The destinations are exciting. The process of getting there, i.e. flying with London and bringing all the baby stuff along with us, does not excite. However, if London’s behavior as a baby can be a predictor for how she’ll be on a flight, I can say she probably won’t put up much of a fight. It’s her 40 lb. car seat that will.

Generous Ventricles

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The hardest day to get through was Wednesday, the day after we got the news that London would need an MRI and a neurosurgery consult. Though we knew that the challenges of having a preemie were not over, we did not expect to encounter an obstacle quite as scary as this. But, with some prayer and time we reacquainted ourselves with the frame of mind necessary to get through the NICU days. That frame of mind is a place where you never forget that you’re not in control. The NICU does not allow for you to believe you are in control of anything. It is like you have been dropped into a boxing ring and all you can do is roll with the punches, no telling how awfully painful the next one is going to be, nor from where it will be coming. We got pretty good at that last winter and by Thursday I think we both felt better in a way. I even made a joke about it. After Kate asked me what I had decided to give up for Lent I said, “Hope.”

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London at 9 months.

We waited until the following Tuesday for the MRI. We were told it was a rapid MRI, a brain shunt series, which would take about five minutes and London would not have to be sedated for it. The consult would follow right afterward so there would be instant results.

At Children’s we were taken to an MRI waiting room. There were no small gowns for London to wear so she wore pants half a foot longer than her legs and a top that looked like a Snuggie. Kate and I chose to be in the room for the MRI so we had to get rid of all metal we had on. Zippers were okay. After a few minutes we were ushered down a very long hallway into the MRI room, where the door was lined with a metal detector, ready to catch any metal on or in our bodies that we forgot to mention in the screening process.

This MRI room was out of a Sci-Fi movie. It would have looked right at home in Stanley Kubrick’s 2001: A Space Odyssey. The walls were of white gloss and the lighting made the room glow an interesting mix of blue and white. London was placed on the MRI bed, which had a blue pad on it that the nurses kept calling a “blue snuggly.” They warned us that once London was on the bed, they would fold up the sides, buckle them together, and suck all the air out of the snuggly to vacuum pack London. They added, kids don’t like this very much and they start to squirm and cry.

We folded up the sides of the snuggly, snapped the four buckles up from London’s feet to her upper chest. Her head was braced with many cushions, but first earplugs were added to protect her from the noises of the MRI. And then a nice lady sucked all the air out of the blue snuggly. By all measures London seemed to enjoy the whole experience. She did not make a peep and was even smiley. The bed slid into the MRI and the scanning began. London could look toward her feet and see us standing there waving and smiling back. She made two noises of distress, but quickly calmed down when she saw us. Five minutes later, she was done, and free from the blue snuggly.

We then had to go upstairs and check in for the neurosurgery consult. Within ten minutes we were sitting with a very nice lady who did not cut to the chase right away, but by the way she spoke and by the words she chose, I had a good feeling. She gave us a complete rundown on hydrocephalus and brain shunts. We looked at images of London’s head. In one image we got to see all of her teeth, although she only has three that have broken through. The rest of them were floating at various heights above and below the mouth. We went over the symptoms of hydrocephalus. There was a lot of talk about the size of my head. This was not news, but to prove the point the lady measured my head to confirm. 63cm. She said anything above 59cm is huge. And hey, it turns out Kate’s head is sort of big too.

London, we were told, has generous ventricles, but shows no signs of hydrocephalus. Of course, we should still monitor her head size and maybe at age 2 another MRI. Apparently, the MRI images told the doctors that there was nothing to be “excited” about, an interesting choice of words. If there was an issue, excitement would not be the feeling I would have. I found myself excited because there was not an issue.

We spent a very long time talking about London’s head and why it looks like London has adjusted nicely to her generous ventricles. As soon as we were out, Kate returned to work and I called my parents who, I know, were anxiously waiting for news and probably not expecting to have waited this long.

I returned home with London, relieved to an extent I cannot describe. I spent a lot of that afternoon and evening looking at London even more than usual, admiring her strength and attitude, and imagining the day I would tell London about the first year of her life. What would I tell her about a day like today? And what about the days far scarier and more exhausting than this one? I don’t know, but I know she will love the ending.

2 lbs, 8.5 oz

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I decided to post another original entry from our NICU journal. This is unedited from one year ago today.

Day 13 – February 12, 2014 – Wednesday

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February 12, 2014, one day after we got to hold London for the first time.

London had her PICC line pulled today. As well as her IV. So she is a lot freer today.

Tomorrow is London’s 2nd head ultrasound.

Today was a tough day, though not for you, London, but for your parents because the baby across the hallway from us was dying. This baby arrived around the same time you did, but we had noticed its condition was declining. When we saw both of the teenage parents sobbing today and calling in relatives we knew it was bad.

I had gone to return a pump and overheard docs saying that the chaplain had arrived. As I later stood at the sink washing breast pump parts, not more than 8 feet from where the baby was dying surrounded by family, I couldn’t help but cry. I don’t know this baby. I don’t know its parents, but I know what they went through to make it to this point and to face the truth that not all babies make it out of here was gut-wrenching.

The baby and the family were moved to a private room for the baby’s final hours of life. Now their pod is empty, lifeless, and being mopped by a janitor who hasn’t a clue what happened in that space just an hour earlier.

There is an amazing disconnect between some hospital employees and the patients and stories contained within the rooms of that hospital. I will never quite get used to it.

Today, London, you weighed 2 lbs, 8.5 ounces and it dawned on me that I weigh 100 times as much as you do.

One Year Ago Today

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Mom’s hands comfort London on February 4, 2014.

One of the most important things Kate and I did in the frantic, scary days following London’s birth was to write down what we did, even if it was watching some television to unplug for a minute. I am so thankful we have a journal from that time and from most of London’s NICU stay. Today I want to share with you what I wrote on February 5, 2014, London’s sixth day of life.

Wednesday.

Nana and Papa (my parents) told us that we could do whatever we wanted to this day and they would take care of dinner and grocery shopping and whatever else. We, of course, chose to sit next to you for the day. So we did. It was exhausting, the most tiring thing I’ve ever done, to sit next to you and constantly worry, watch the monitor, and pay attention to each and every beep.

You had a decent day. You had one more dose of drugs this night at 7, hoping to close that PDA of yours.

We had leftovers for dinner tonight. Nana and Papa came to the hospital to pray with us and to see you. They knew we were exhausted from being with you.

We watched Downton Abbey tonight, but Kate fell asleep. She is so exhausted from producing all that milk for you. I finished the episode with Nana and Papa and went to bed for the night. They stayed up though and watched another episode of Breaking Bad.

It’s silly what I wound up writing down some days, but even the mention of watching Downton helps me visualize that evening and what came before and what followed.

Maybe by chance you just found this blog and you have a baby in the NICU. If you haven’t already started a journal, I highly recommend getting one and starting today. It’s never too late. A lot of people might say, and you might think this yourself, that I will never forget such days as those immediately following the birth of my preemie. There is some truth to that, but there is only so much room in our heads and some bits of information slip away, unless you are one of those people who can remember every single day of their lives, every meal, every drive to work, etc. Chances are that this is not the case, so go get yourself a journal.