Preemie

4,100 Pages of Harry Potter

/ bperica / 2 Comments

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

/ bperica / Leave a comment

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.

That First Goodbye

/ bperica / 2 Comments

As I mentioned a couple weeks ago on this blog, I had a trip to DC coming up. It was a birthday gift from Kate. Well, it was an awesome trip and I will share about some of it soon, but I want to write about the day I left for DC.

FullSizeRender-4

A quick snap of London after saying goodbye at the airport.

I had been thinking for over a month about what it would be like to say goodbye to London at the airport. Since she was born almost sixteen months ago, I had never been more than an hour’s drive away from her. I had spent one night away from her, but that taking place in the same city. So, when we got to the airport I was saying goodbye to more than just London.

Since her instant, premature arrival, I have been tied to London like nothing before in my life. She took the breath out of me when I stood up and looked at her being pulled from her mom in the OR. Since then she has had it. I wished time and time again over those first ten months of oxygen support I could have given her more of my breath. Instead, I gave what I could, my constant attention, worry, and commitment to making her as happy as possible with meticulous mental note taking of her every need. For, 469 days, London had been within reach. Was I in control for one of them? No, but at least I was there. I knew I was saying goodbye to that streak, the first, long season of fatherhood.

When I arrived at the airport with my mom and London, I had to face the end of an era, so to speak. I had prepared myself and worried about it as much as possible. I still cried though. I leaned in to kiss her perfectly soft cheeks and could not leave without taking another picture of her. In that picture, she appears to be a little confused, possibly from my tears, but as beautiful as ever. I looked at it more than once while I was in DC. And more than once, I thought of our next hello.

One Year Ago Today, We Left the NICU

/ bperica / 1 Comment
IMG_4165

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.

FullSizeRender-3

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.

Sidebar Additions

/ bperica / Leave a comment

Hi People.

There may not be time for me to write a more substantial blog than this today, but I just wanted to alert you to a few sidebar additions to the blog. There is now a Facebook like button. So, if you haven’t, get on that button. There’s also a link to my Instagram account and a preview of some of the most recent photos I have posted there. Lastly, there’s a button you can click to follow the blog via email.

Now, I must attend to packing for my trip. I still remember how. I think.

Surviving at 22 Weeks

/ bperica / 1 Comment

“Do you want us to save your baby?”

_BKP2261

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

/ bperica / Leave a comment

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

/ bperica / Leave a comment
IMG_0109

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

/ bperica / 5 Comments

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:

IMG_2319

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

/ bperica / Leave a comment

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.

She Sneezes Into Her Hand As Well

/ bperica / 4 Comments

She sneezed into her hand five minutes after it happened. I shook my head in disgust and in further disappointment in myself for not stopping her five minutes earlier.

We were all out at one of my favorite restaurants, the Bull and Bush, having an excellent weekend dinner. London was in a high chair eating off of the disinfected table. She wasn’t too enthralled with the food. It was great, but there was so much to look at so sometimes she just wouldn’t eat what we were offering her. When that happens we always set the food in front of her.

London is finicky about when she wants to feed herself versus when she wants us to give her food on a spoon or with our fingers. Right before our server walked up to the table London turned away from a piece of food Kate was offering her. Kate placed it on the table in front of London, knowing that London would pick it up eventually and feed herself. But there would be no time for that. The server picked up the piece of food and fed London right off her finger.

I was so freaking surprised I froze, didn’t say anything, and looked at Kate. Did that just happen?

Kate’s eyes answered back, yes, yes it did. 

Okay, I thought. It’s probably not that bad. Wait, who am I kidding here? That server just fed London like she was her grandkid (interestingly enough, she was plenty old to have a few) without any knowledge of London’s past. And we have no knowledge of where her hands have been. Does she wash them as much as she should? Not sure, but I found out she prefers to sneeze directly into her palm.

BKP_0466

Our old lofty perch, from where the Bull and Bush was within walking distance.

I thought about saying something to her or writing on the receipt, but the damage had been done. If she had some disgusting bacteria on her hand she had already gifted London with it. I know very well that at some point I will transfer a bug to London, but that’s the right of the parent to do. Plus, I know I have big pump action bottles of hand sanitizer on both floors of the house. I know my hands get dry and cracked from using so much of that stuff. I have the cleanest hands I have ever had in my life.

Yes, I was mad at the server, but I let it go. I was mostly disappointed in myself. We were both trying to be so nice that we didn’t say anything at all when it happened. And it happened so fast. If we were going to say anything at all it would have needed to be pretty blunt like, “Stop! What in the hell do you think you’re doing?”

I vow to never let this happen again, but I also don’t expect to come across too many servers who feel like they can hand feed my baby. If they do, I’ll throw being polite right out the window.

Graduating to a Bottle

/ bperica / 3 Comments

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

/ bperica / 3 Comments
IMG_6104

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.

IMG_6096

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.

I Hear Old People

/ bperica / 2 Comments

It was one of those freak, 65-degree days in January and I had ventured downtown with London. We were at REI and I had just sat down at a patio table at the Starbucks there, overlooking Confluence Park and the South Platte River and Cherry Creek.

Our table was in the sun and London stayed in her stroller, which was positioned just right for her to eye every person walking by her on their way to get a coffee. Babies love people watching and London was clearly into it.

IMG_4863

The scene of the crime.

I pulled out my phone and casually checked my email and did a quick scan of Instagram. It was about two to three minutes of screen time before I heard an old woman speaking. She was seated with her husband, I assume, at a table directly across from our table, with the path for patio customers between us. I had started to eavesdrop because I heard her say to her husband, “Don’t you wonder about kids these days and what their vocabulary will be like as they start school?”

I couldn’t hear what her husband said in response. I continued listening, positioned in a way that I was facing London, now giving her a bottle, but I had my sunglasses on so my eyes were fixed on this lady and she could not tell.

What she said next made me freeze. “Well, that dad over there has said all of three words to his daughter since sitting down. He’s been playing with his phone and not talking to her at all.”

In that moment, I’m pretty sure I wanted to huck my iced coffee at her face. But she went on, bemoaning the sad state of parenting because of parents like me who look at their phone in the presence of their baby. I continued my stare, amazed that she could not see my eyes through my sunglasses and astonished that she would choose to say such things at all about someone sitting right across from her.

The old couple’s conversation eventually shifted to a different topic.  Where I sat I did not need the hot, January sun to keep me warm anymore. My blood was boiling. For the next ten minutes I sat there thinking about what I would say to this woman, if anything at all, and how would I deliver the message? And every word I spoke to London I second-guessed, am I saying this to London just because of what that old lady said?

Was this a moment to hold my tongue and be the bigger person? Or did this justify letting this old hag know just how much her assessment of modern-day parenting was incorrect? I admit, normally, I would have let this lady walk by without saying a word, but I had never had my parenting called into question like this. I am no perfect parent, but speaking and reading to London is where I excel. I decided I had to defend this.

The couple had stood up, gathered their biking gear, and were making their exit, forced to walk right by me. My eyes did not leave that old lady as soon as she starting moving. This time she noticed my stare and as she was right by my table I said, “I heard every word you said about my daughter and I. I really didn’t appreciate it and wanted to let you know that you are wrong. I have read thousands of pages to my daughter and I think she’ll have a fine vocabulary.”

Old lady, immediately apologetic and surprised, “Oh, I’m so sorry.”

No response from me. London stared at her and made some noises. “I can tell she’s trying to talk,” the old lady said.

“Yep,” I said, a little on the curt side, but hey, I think it’s pretty clear that I didn’t strike up this conversation to be friends with you so move along.

She felt like adding one more thing, “Well, it wasn’t like I was broadcasting it.” I did not acknowledge that and she got the hint and moved on. All the while her husband was a little behind her and I am pretty sure he missed the whole exchange. I gave him a wave and said, “Enjoy your ride.”

“Thank you,” he said, and walked on, completely unaware of what went down.

It was so liberating to let that woman know just how wrong and mean her comments had been. I watched her at a distance now, as she was getting onto her bicycle. There was a part of me that was hoping she would feel like an ass for the rest of the morning.

I think what that old lady said to her husband that day is so characteristic of some older or elderly people. It’s this feeling they sometimes get (or always have) that everything used to be better and now everything is going to shit, including parenting. As many people grow older the list of things they dislike and bemoan grows longer and longer. Eventually it is so long that most of the sentences coming out of their mouths are complaints. The worst of these are the most negative people to be around. This is a trait I loathe and one that I hope does not follow me into my golden years.

As a younger person it can be discouraging and exhausting to be around people who think everything is going to hell. I know it is very hard to be positive sometimes. And it is hard to hope. But try. Promise me that. And I’ll promise to read to my daughter today.

A 1 ml Bottle

/ bperica / 5 Comments

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

/ bperica / Leave a comment
_BKP2827

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.”

IMG_2714

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.”

Nana Remembers London’s Birth

/ bperica / Leave a comment

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

/ bperica / 1 Comment

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

/ bperica / 1 Comment
Screen Shot 2015-03-29 at 9.08.48 AM

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.

10 Signs You’re A Stay-At-Home Dad

/ bperica / Leave a comment

1. When you’re hanging out with other couples who have kids you start identifying with what the moms in the group are talking about. You’ve chimed in before and then you’ve immediately felt sort of awkward. Just keep doing it, because sometimes, mom really doesn’t know what is best. Dad does.

2. You’re intimately aware of just how much Netflix’s selection of streaming movies sucks. Knowing this, you’ve delved into several binges on documentaries available on Netflix. When you’ve exhausted the current outstanding selection of these films you once again are disappointed to find that the popular selections on Netflix consist of the remake of Robocop, Homefront, Redemption, and every other Jason Statham movie in which he plays a hardscrabble character who has run up against some guys who threaten his life leading to Statham coming out of quasi-retirement to blow shit up and kill people. Thank God for HBO.

3. You’ve caught yourself looking at a stay-at-home mom. No, no, no, not in that way. You were just staring at her because you were thinking how hard it would be to carry a kid around and all the kid stuff with arms like that.

4. Your to-read pile of books and magazines looks like you’re in grad school again. That is, you have bookcases full of to-read books and your nightstand to-read selection has grown off of the nightstand and is now growing in all directions on the floor and up opposing walls like kudzu. (This particular sign is in no way exclusive to SAHDs.)

5. You’ve watched the entirety of HBO’s The Wire while playing on the floor with your baby, while changing diapers, while washing Dr. Brown’s bottles, while feeding baby, while dressing her, and while reading The Very Hungry Caterpillar.

6. You’ve taken your baby for a walk through the park, a rather large park, and you’ve been the only dad in site. It’s just you and your baby and a hundred other moms with their charges.

7. Once or twice you’ve noticed a dad looking at you. You look back and the dad quickly turns away. He was looking out of curiosity and amazement because of the ease with which you’re doing everything, well not quite everything, baby-related that only the mom in his young family does.

8. Conversation with other dads is always going to be a little different for you. The odds are they are not SAHDs themselves, but make an effort. You’ll soon find something to talk about. Dads who aren’t SAHDs still get a chance to watch the shows or movies you’ve recently seen. You just watch them at totally different times and with different distractions.

9. You relish opportunities not afforded to you in a typical job: you don’t shave for months, you wear a t-shirt and pants every day, you drink a beer with lunch in your office (aka house), you drink another one when the afternoon is getting really long, you don’t have to worry about what day of the week it is, and maybe somedays you just neglect showering…not because you forgot to, because you can.

10. You can carry a ridiculous amount of goods while holding your baby. Example: When you get home from a Costco trip you grab baby first and hold her with left arm, sling diaper bag over right shoulder, carry two gallons of milk with arm that is holding baby, carry 48 rolls of toilet paper with right arm, and with the limited real estate available pinch a bag of avocados in between a couple of fingers (doesn’t matter which hand).