August 2015 – How is Kinley?

Day Sixty

Today is our sixtieth day in the hospital and we’re inching towards the exit.

Kinley is now more than twice her birth weight at 2163 grams. She’s been steadily gaining for four days now. It looks like she’ll be close to five pounds when we are finally heading home.

The report from her Thursday night MRI has been written, but we haven’t been able to speak to a doctor about it yet.

We’ve opted to get her two month immunizations in the hospital. Generally, pediatrician’s give all five in the same visit, which can be rough on a baby as small as Kinley. In the NICU, they administer only one immunization per day to allow them time to rest and recover. Kinley is doing well so far. She actually fussed more today when being given her liquid Tylenol — to help with the discomfort and any fever — than she did when the nurse gave her her shot.

Tower of Terror

After a restless night, we decided to head downstairs for a quick breakfast before Kinley’s next feeding. We checked our badges at the reception desk and dragged ourselves onto the elevator. We rested against the back wall and watched the doors close.

We waited. After several moments, mom glanced up at the digital readout of the floor. The elevator wasn’t moving. She started to panic.

We were trapped on the eleventh floor.

I awoke from my daze and looked up. Yep. Eleven. I panned down.

“Huh.”

I leaned forward through the fog and mashed ☆1. The elevator sprung to life.

Car Seat Challenge

Our day nurse decided it was time for the Car Seat Challenge.

After her morning feeding, I set Kinley’s car seat down on the floor in front of her bassinet. We propped up the seat with some blankets to ensure it was level.

I plopped Kinley in and went to work solving the puzzle of the five point harness around her tiny, wiggling limbs. I finally got her locked in and mom pulled her straps snug. The infant car seat simply ate her. All you could see of Kinley behind the buckles was her head and feet. We had to roll up a pair of receiving blankets to pad her on her left and right and keep her straight.

After a little fussing and some hiccups, Kinley slept through most of the ninety minute challenge. No alarms and no drops in her stats.

Check off one more item for her ticket home. She passed.

Continue reading Car Seat Challenge

Setting Expectations

Our neonatologist and pediatrician have been preparing us for some of the precautions we’ll need to take when Kinley comes home to make sure she stays healthy. She’s at greater risk for all sorts of illnesses and conditions.

We know many friends and family are eager to meet her, so we felt it best to set expectations as we get close to going home.

Her neurological system is still developing and we’ll have to avoid too much stimulation. This means we’ll have to overall limit her visitors, particularly for the first four weeks.

Her immune system is not as strong as your typical, full-term baby. Your run of the mill cold could send her back to the hospital with complications such as pneumonia or worse. We’ll have to be especially cautious during RSV season, which runs August through April in Florida.

Friends and family that visit, and anyone in their household, will need to be cough, sneeze, and fever free for at least five days. Company will have to wash their hands once they enter our house. Anyone we invite to hold Kinley will first be asked to remove their jewelry and scrub up to their elbows. They’ll also have to resist her cute cheeks because kisses and touching of her face won’t be allowed. It’ll also be a few months before she can be around other children.

We as parents will have to get extra immunizations and she’ll be getting a preventative shot for RSV every month. We’d ask our visitors to take similar precautions and at least get the flu shot during flu season (not the inhaled version).

Her respiratory system is also immature and she underwent some extreme procedures to keep her breathing. Strong perfumes, colognes, and other scents could irritate her lungs. She’ll be very sensitive to cigarette smoke. It would be best that anyone that does smoke showers and put on a fresh set of clothes and not smoke before visiting Kinley.

Please know that while we might seem like germaphobes building enormous walls, we are happy to see our loved ones and excited to unleash our little warrior upon the world.

Pack Your Bags

We spoke to Kinley’s neonatologist this afternoon. He says she is doing fine and acting appropriate. He thought she handled her shots over the past few days very well. So well that he’s updated her order so that she’ll get both of her last two shots tonight. Her second time on ad lib is going better — eating more and gaining weight. She’ll be eligible to go home tomorrow.

We also discussed her head MRI at length.

It showed evidence of her past bleed. The radiologist could see where the ventricle had been swollen and some remnants of blood. But, it is resolving itself as it should.

The grey matter appears normal. A sigh of a relief.

There were signs of mild injury to the white matter, which is involved in motor control. Our doctor said it is difficult to say what this could mean. We’ll have to keep a close eye on her development, especially when it comes to crawling and fine motor development.

Inside Out

Mom and I made time for the two of us on the eve of our departure from the hospital. We drove to the closest movie theater to see Inside Out. As simple of a date night as it was, it really couldn’t have been more perfect evening.

Joy and Sadness were both there with us throughout our last day.

We were certainly excited to finally head home. But, we also had to say goodbye to fellow NICU parents that had become great friends and nurses that were now like family.

Mom gave Kinley’s neonatologist a big hug and cried when he left.

When I went to fetch our car, I cried while I rode the garage elevator. I don’t know what it was. I suppose relief.

It was an amazing feeling to pull Kinley’s monitor leads off for the last time. After we had strapped her into her car seat, I watched her sleep and waited for Transport. I heard a warning alarm chime and the hair on the back of my neck stood up. No. It was another room.

As we made our way across the lobby downstairs, I looked around for any familiar faces. Someone to wave to. I looked forward and saw the approaching daylight. We walked through the waterfall entryway and Kinley was breathing fresh air for the first time.

As we headed for the toll road, I played Glad You Came, the song that always played after Solar Bears games when it was time to leave. We listened to the Inside Out soundtrack the rest of the way home.

I was advised by a past NICU parent that when we stepped out of the hospital, we should take in the moment. We moved so quickly from exit to car that we missed that opportunity. It wasn’t until we were home, sitting on the couch, with Kinley in my arms, that I think my moment came.

It was nice to be home, for sure. It was peaceful. The couch was comfortable. But, really, I didn’t feel as different as I thought I might. There was an overriding constant between the hospital and home. We were together.

Adjustments

Kinley is getting used to a whole new world. The house may be too quiet and dark for her, especially at night. She seems to sleep better when there’s a little light and we are up and about making noise. We have a few sound machines, but none of them make the beeps and chimes of the hospital. I joked about putting on episodes of Grey’s Anatomy or House to help her feel at home and mom actually tried it.

Kinley isn’t the only one adjusting to life outside the hospital. Several times now I’ve held my hands under our sink faucets and stood there waiting for the water to start automatically. I practically forgot how to make coffee at home. I wouldn’t say that I miss the monitors, but I do often watch Kinley and wonder what her vitals are and sometimes itch to reach for the thermometer at diaper change as we did at each hands on. I still think of everything in grams, milliliters, and centimeters, though the pediatrician works in pounds, ounces, and inches.

Mom swears it’s just the two of us, but she is still logging Kinley’s bottles in milliliters and not ounces.

Survived Week One

We’ve survived our first week home. Kinley is doing well. Mom and I haven’t really figured out a system yet since we’ve both been balancing work this week.

Nightmares

Mom and I both woke up from nightmares our third night home.

I had dreamt that we arrived from the hospital to a full house of family and friends eager to meet Kinley. Walking into a packed room, even one made up of loved ones, scares me right now. But to make things worse, Kinley wasn’t even with us. We had had to leave her at the hospital.

Mom’s was a bit more dramatic. While giving her a bottle, Kinley’s head completely popped off. Mom desperately tried to reattach it. Ultimately, she had to take Kinley back to the hospital and hand her over to the nurses. They took Kinley away and left us back in our same eleventh floor room to wait.

Eye Appointment

We took Kinley to her fourth eye exam on Monday.

At the hospital, she laid in a bassinet for each exam while a nurse would hold her head steady. But, at the doctor’s office, there was no bassinet. I had to hold her in my lap throughout the exam. I came close to tears.

Her retinopathy has advanced to Stage 2, which isn’t great news. If it advances to Stage 3, we’ll need to start thinking about treatment. Stage 4 and 5 involve a detached retina and would require surgery. She could, and the doctor expects that she will, grow out of it. He said she has several factors in her favor — she’s growing and doesn’t require extra oxygen.

We have another appointment in two weeks to monitor it.

Weight Check

We had another weight check with the pediatrician this week: 5 lbs 0.4 oz. Or, in my book, 2279 grams. Not really much growth in the past week, but he thought she looks healthy and he is not concerned. We’ll have another weight check in two weeks and then will likely advance to more standard appointments.

Corrected

In the last week we’ve completely transitioned Kinley from preemie to newborn outfits. In our last days at the hospital we’d struggle to get her to take 40 mL, but now she’s downing 80 mL and sometimes wanting more.

Everyone asks us “Is she sleeping through the night?” and other typical three month questions. We have to remind them: she still isn’t supposed to be out in the world yet. She might be nearly three months old, but her due date is another week away. When evaluating her developmental milestones over the first two years, we’ll have to take into account her corrected age.

Throughout our NICU stay and for our first few weeks home, we’ve been going by her gestational age. If asked how old she is today, my first answer would probably be to say “39 weeks” — though what most people are looking for is something like “eleven weeks and three days.”

Since she was basically three months early, when she’s six months old we’ll say that she’s three months corrected. She’ll probably be fitting into three month old clothes then and doing more three month old type things.

Maybe.

She’s already probably more alert and engaging than your average newborn. Although it might be a while longer, I half expect her to be able to roll over any day now.

Not The News You’re Looking For

Kinley had another eye exam this morning. The prognosis isn’t dire, but it also wasn’t good.

The exam took longer than usual; much longer from my perspective as I held her again and couldn’t help but cry as it drug on. Kinley wasn’t exactly cooperating — wise enough now to look away from the doctor’s light. The doctor was also being extra thorough because he didn’t like what he saw.

Like two weeks ago, she’s still categorized as Stage Two. But, the vascular growth has gotten a bit worse and more abnormal. The doctor was a bit surprised because she is otherwise healthy. He is concerned and wants to keep monitoring closely. We have another exam in a week.

She’s almost to 40 weeks gestation, which is about when the development often turns for the better. There’s no sign of the smaller, abnormal blood vessels bleeding. Her growing and not requiring extra oxygen continue to be factors working in her favor. So, there’s still hope that things will work out on their own.

If treatment becomes necessary, the doctor said that the negative impact to her vision should be minimal at this point.

Growth Spurt

Kinley is twelve weeks old today and we took her in for her latest weight check. She is now 6 pounds 10.4 ounces (3015 kg), two pounds heavier than she was two weeks ago and nearly triple her birth weight. We checked her length at home: 19 inches (48 cm).

Our next pediatrician visit shouldn’t be for another month. We do still have upcoming appointments for eyes, pulmonology and development.

Happy Due Date

Today is Kinley’s official due date.

It makes for an interesting milestone for us. I wonder if parents even think about their child’s original due dates. For us, it’s a date we’ve referenced in relation to Kinley’s progress for the last twelve weeks and we’ll have to consider it for the next couple of years.

She celebrated with us by showing off a new trick — squirting formula out of her nose.