Neonatal

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.

The NICU Is A Fortress

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One of my favorites. Her 2-month birthday. “To infinity and beyond.”

As badly as I wanted London to leave the NICU I was also terrified of some of the things she would lose when we walked out of that hospital. 24/7 caretakers. A team of RNs, NPs, and MDs just feet away. The opportunity to talk to one of them whenever we wanted to and to ask the dumbest questions of.

As a parent, you do grow accustomed to having your baby in the hospital 24/7. It is comforting to know that your child has the best babysitters in the world.

While London was still in the hospital I wrote:

Right now I feel like taking her home will be bittersweet. I’ll be beside myself, in a good way, when we walk into our house holding London, but it’ll also be frightening to leave our NICU family.

Back then, the approaching discharge date meant exposing an already fragile baby to the terrors of this world like driving home with her! Or contact with the public, those creepy baby oglers who think they have the right to walk up and touch your child just because she is the cutest thing they have ever seen. Can’t stand these people! We would be responsible for a baby, yes, but also all the leashes that come with her: NG tube connected to a feeding pump, an oxygen cord, and a pulse ox connected to her foot. Monitoring all that could be overwhelming on top of normal baby duties.

But a baby has to leave the NICU eventually. We had our gambles and triumphs there in that pod, but the good stuff was to be found in life beyond those hospital walls. It is hard to think of leaving the NICU as anything but a tradeoff. An adventure was before us, filled with successes and failures, loss and gain, losses and victories. But behind us was London’s NICU pod, which, for her parents, became the safest place in the world.

8 Memories for 8 Months

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I had wanted to sit down and write this on London’s actual 8 month birthday, but I’ve been very busy this last week and a half painting a bathroom on the main level of my house. This was no ordinary paint job either. The primary color, Loyal Blue, from Sherwin-Williams had a really hard time covering the tannish color of the bathroom. Four coats. I painted four bathrooms, they just all happened to be the same one. One wall is striped with SW’s Citrus color and their high hide white. Now that that’s done I can once again return to writing a little more regularly, but now I throw in some obligatory before and after shots of my handiwork.

Before:

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Pictured: the bathroom on our main floor before I spent a week in it.

After:

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Boom. Nautica, if you find this blog, I just wanted to let you know that it does look like I copied the color scheme of every piece of clothing you have ever made, but it was just coincidence. Promise.

Onward.

As I think of each month of London’s life so far they are all so distinct in my mind. Naturally, there are some moments that always come to the forefront, like London’s extubation in month 1 or her discharge day in month 4. But for this post I wanted to write about the less obvious memories from each one of these awesome months. Here goes…

Month 1

Crazy. Crazy is knowing you’re about to introduce someone to their first grandchild. As my father-in-law followed me into the NICU on the day of London’s birth, he could not exactly see where I was leading him. As I arrived at London’s isolette I stepped to the side and Tim got his first glance of my daughter, his granddaughter. I put a hand on his shoulder and the first words out of his mouth were, “She’s perfect.”

I don’t know what I expected to hear from him. It’s one thing introducing a full-term baby to someone, it’s another thing altogether to present to someone their granddaughter weighing in at 2 lbs, skin and bone skinny, draped with wires and tubes, and plugged into intimidating machine after machine. To hear someone say, “She’s perfect,” after seeing all that was exactly what I needed to hear at that moment. Tim probably didn’t intend to make such an impact with those words, but had he thought about them in advance he couldn’t have come up with something better.

Month 2

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This month we started to dress London in clothes. Her skin was tougher. She wasn’t vented anymore. It was still one hell of a task to put an outfit on her, but I discovered I loved dressing her. Still do. This was the first time I remember her being in an outfit. The picture doesn’t do this outfit justice. As you can see her outfit appears baggy, but if I go into her closet right now and find this in the pile of preemie clothing we have I will be astonished at its size. It’s hard to believe she was small enough to ever fit it. London has an incredible wardrobe. Every day I get a little excited about choosing her outfit for the morning. Of course, I have to yield to mom’s choice some days.

BONUS Month 2 Memory: Like every other day, I was sitting there with London, doing kangaroo care in the recliner that every NICU pod has, but today the recliner was reclined more than usual. I carefully tried to adjust the incline of the seat without disrupting London’s sleep or pinching the tube on her CPAP, but nothing was working. The seat just kept reclining and reclining to the point that if I didn’t extend my right arm to firmly grasp the end of the armrest, the chair was going to tip backward. So there I sat for 40 minutes or so. Right arm keeping both London and I from falling backwards. Left arm holding her steady on my chest. Body rigid so as not to disrupt our balance. Silent. Just waiting for Megan to come check on us so she can help us out of this broken seat.

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My dad holding London for the first time on April 3. This was also when my mom first held London. London’s fingers were still the size of the finger nail on my dad’s index finger. When you have a preemie, one big adjustment you have to make right away is not getting to hold your baby for a while. Grandparents had to wait much longer. Friends had to wait until London was out of the hospital. A lot of what people associate with having a baby is greatly delayed. As a NICU parent, you quickly grow accustomed to all big events arriving at a snail’s pace.

Month 4

Kate’s dad and sister were in town one weekend. It was a Sunday and they were headed back to Wyoming. They had gone ahead with Kate to the hospital. I stayed behind, taking care of some things at the house and would possibly join them later. As I was walking up to the front doors of the hospital I saw Tim and Kendra. We had a brief conversation and said goodbye, but I knew something was not right. I got upstairs to London’s pod and could see it in Kate’s eyes. I sat down next to my two girls and waited for our primary nurse, Megan, to come in and explain to us the next NICU obstacle.

What stands out about this day is instantly knowing from my conversation with Tim and Kendra that I was about to get disappointing news and that when I heard that news from Megan, it was the first time I cried in front of her. The curtain was open, I’m sitting there with my back to the window, facing out into the rest of the NICU and wondering after all this time if we were ever going to get out of this place with a healthy, strong daughter.

Month 5

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This was the first full month that London was at home with us. To narrow all the memories down to one particular moment does not mean that the selected moment is better than all the rest that month. I’m just going to go with mornings for Month 5. It was still early summer, so the cool morning air coming in the windows made it especially hard to wake up after also waking once or twice during the night to feed London. This was one of those days when Kate took care of the early morning feeding and I, still holding onto the belief that if I kept on sleeping I would eventually catch up to the lack of sleep over the last five months, kept on sleeping (as you can see). But there’s no catching up. Look at London’s face. She knows it. She thinks it’s funny.

Month 6

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Going out on the Flaming Gorge Reservoir. It’s something that we do every summer, but this particular day, was the first time we left London with anyone for more than an hour. Kate’s mom watched her and we went out for some tubing and fishing. We had to let go for a few hours. Letting go after such a long and traumatic NICU stay is, without a doubt, one of the hardest things for NICU parents to do.

Month 7

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That time she fell asleep while doing the “pull-my-finger” joke on herself.

Month 8

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Establishing traditions. We met my parents in Breckenridge two weeks ago. Breck is a Colorado mountain town Kate and I love to visit. This was London’s second trip to Breck, but this time it was more relaxed and she was much stronger. Some traditions you welcome new family members into and other traditions are established once that new family member arrives. This was the former, but I know that this tradition will look much different in the future as London grows up and wants to do more and more activities. We’ll have her biking up Swan Mountain Road in no time.

 

The Museum of London

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I have a sneaky suspicion that throughout her life London will be the recipient of a few gifts with a British theme to them. If we were going to easily tire of this, we wouldn’t have named our daughter London. Those gifts started arriving right away, one of them directly from London itself. A friend of ours was in the UK when London was born and brought back a gift from the Museum of London. When I saw the bag the gift came in I knew exactly where I was going to place it…on one of the walls of London’s pod. There it stayed for 109 days. As the weeks and months passed, there were more signs on the walls in London’s pod. Of course we have them all now at home, but I took pictures of all of them before we cleaned out London’s NICU pod. Here they are…

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London’s first footprints with her birthweight. There’s no perspective here, but those feet are the size of my thumb. Oh, and all these signs were made by the nurses. That is something I never expected about our NICU stay, to have on-demand artists to create signs commemorating London’s growth and month birthdays and even holidays.

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London’s first holiday was Valentine’s Day. We brought cards in for her. I bought a card for mom from London. Just looking at the card from London made mom cry. Forget about reading it.

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Born on January 30th, we just had to select a day at the end of February to be London’s one-month birthday. We took handprints and footprints that day and a family picture. London’s hands that day were about the size of my thumb.

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By March 8, London was 6 lbs 1oz shy of my birthweight.

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These footprints, although small, looked like Bigfoot had made them when you saw them side by side with London’s birth footprints. Unbelievable. Also, had London gone full term, we were told her birthweight would have been around 9 lbs 2 oz, the weight on her three-month birthday.

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Lastly, one more sign made just in time for London’s discharge day from the NICU. She gained 9 lbs in the NICU and grew 6 inches. By her fourth month there, London could have eaten some of her NICU neighbors for dinner. She was the Queen Bee, unrelenting in her cuteness and exponential growth chart.

Summa cum laude. 

For Your Eyes Only

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The hospital handout we received on Retinopathy of Prematurity (ROP) after London received the diagnosis describes it this way:

The retina is the inner lining of the eye that receives light and turns it into visual messages that are sent to the brain. If one thinks of the eye as being like a camera, the retina functions as the film. Blood vessels that supply the retina are one of the last structures of the eye to mature; they have barely completed growing when a full-term baby is born. This means that a premature infant’s retina is not yet completely developed. For reasons not yet fully understood, the blood vessels in the immature part of the retina may develop abnormally in some premature infants. This is called ROP.

Every NICU employee did a fabulous job explaining this to us. However, as a parent, this little bit about ROP tends to stick with you more than anything else:

In the most severe cases, the abnormal blood vessels form scar tissues, which pull the retina out of its normal position in the back of the eye. This problem results in severe loss of vision of blindness. Fortunately, this occurs only rarely and laser treatment can often prevent the retina from detaching.

That “fortunately” is so reassuring. If you aren’t catching my drift, I am being sarcastic. Perhaps, if ROP was the only thing we had to worry about while London was in the NICU, the “fortunately” would have been more promising to us, but it was hard to take any comfort in the prognosis of ROP after we were already dealing with chronic lung disease, fluctuating sodium levels, and a brain hemorrhage.

A week or two after London’s ROP diagnosis I wrote an email update to friends and family:

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Shielding her eyes from the bright lights. This photo was taken on the day London decided she no longer wanted to be vented.

Kate and I found out today that London will most likely need glasses throughout her life. There are worse problems to deal with, but I haven’t taken that very well. Glasses are just another thing on her poor face, which has never been truly free of clutter.

We received many responses, but a few stood out. These were the responses that assured us that glasses are not really a big deal and they do not look bad. I know these people were trying to comfort us, but I don’t remember any comfort to be found in their responses. What does stand out about that moment was the realization that these people will never fully understand what London, Kate and I are going through because their babies did not have the same start to life as London. I thought I had made it clear in the email why I did not like the idea of glasses, but let me try again…

As a parent, no matter how long your child is in the NICU, you long for a time when that child won’t need some medical accoutrements to stay alive, to function normally. You crave a purity for your child, the purity many full-term babies get to have, the purity of a perfectly functioning, little body with no attachments, IV lines, or patches on the face. You want your child to experience this and you want to look upon your child when they do. When we heard glasses were a possibility, we were moved further away from that purity. After months in the NICU, something as simple as glasses can be a heavy burden. That’s why I did not take the news well.

London’s Birth: Part XII, Mom meets Daughter

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

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

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

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

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

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

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

London’s Birth: Part X, Into the NICU

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

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

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

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

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

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