How is Kinley?

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.

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.

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.

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.

Kinley had the pleasure of two eye exams this morning. Our primary optometrist examined her and then called in his associate for a second look.

Overall, Kinley’s eyes look slightly better this week and we are hoping she’s turning the corner. But, we are still pretty deep in the woods. Part of her left eye is showing signs that it is close to Stage Three.

They are still hoping for the best and saving treatment as a last resort. We’ll be back for another exam in a week immediately after we see her pulmonologist for her first of many RSV vaccinations.

Kinley is 100 days old today (13 days corrected). As of Wednesday, she was 3.44 kg (7 lbs 9 oz) and 51 cm (20 inches). We’ve started filling most of her bottles to 120 mL (4 ounces) and she’s often finishing them. Sometimes she even wants more. She’s come a long way, but I also pointed out to mom that we still haven’t been home with her as long as we were in the hospital.

She went to see the pulmonologist (lung doctor) this week for her first of many RSV vaccinations. We’ll have to take her back each month through the spring for this shot. RSV is a very common virus that presents as a typical cold in adults and even most children. But, it would be extremely dangerous for Kinley should she contract it.

When she got her series of two month vaccinations in the hospital, she always fussed more about the liquid Tylenol they gave her first than the actual shot. Not so with her RSV shot. She ensured everyone was aware of her displeasure.

After all the noise she made at the pulmonologist, she actually managed to sleep through the first couple minutes of her eye exam.

The prognosis was more of the same. Slightly better and slightly worse. Most of her retina is still categorized as Stage Two. There are small areas in both eyes, more-so on the left, that are Stage Three and that had hemorrhaged. It’s not so bad that the doctor wants to refer us to a retina specialist and start us down the path of laser treatment. We’ll be checking them again next week.

 

After her latest exam, Kinley’s opthamologist is referring her to a retina specialist. Laser treatment is looking more likely, although still not a certainty.

The spot in her left eye is worse. There is more blood collecting around the abnormal vessels. There also appears to be some traction which, if left untreated, could cause scaring and the retina might detach.

At least her right eye looks a little better.

Although he did see Stage Three retinopathy in each eye, Kinley’s retina specialist doesn’t think she’s in need of treatment yet. There was a little blood like before but he didn’t see any traction — the pulling of the retina away from the wall of the eye.

He wants to continue monitoring on a weekly basis.

Kinley’s retina specialist thinks her eye is doing better. The blood vessels are growing a bit in the right direction again. If our appointment next week goes well, he expects to downgrade us to bi-weekly visits.

While her eyes have improved, Kinley’s stomach has gotten progressively worse over the past couple of weeks. It got to the point that she’d cry in the middle of her bottles, often refusing to eat even though she was obviously still hungry.

Mom was able to move up Kinley’s four month check up to today. Her pediatrician has changed her formula, vitamins, and reflux medicine.

Her stomach issues — and eating a little less lately as a result — hasn’t stopped her from growing. She’s now 4095 grams (9 lbs 0.4 oz) and 55cm (21.5 inches) — putting her right on the average weight for her corrected age and even a little on the taller side.

Today and every day the rest of this week, Kinley has an appointment. She kicked off early this morning with the running favorite: eye exam.

In the waiting area, mom and I took turns laying our heads on each other’s shoulders, struggling to stay awake. Meanwhile, Kinley, stared up at the RSV warning sign and elephant toy that dangled from her car seat, bounced her arms around, and cooed for attention.

Her retina specialists says she’s improving and, for the first time since we left the hospital, we don’t have an eye exam for two weeks.

For our second doctor visit of the week, Kinley saw her pulmonologist and received her second RSV vaccination. Aside from a screaming protest to the shot, she’s doing fine. She’s also put on about 100 grams (3.5 ounces) since Friday.

Kinley got to entertain the developmental specialists for her third appointment of the week.

They interviewed us about her various behaviors. How well does she have down the mechanics of eating? Is she grabbing her bottle? Is she trying to hold the bottle? Does she reach for things? Does she smile?

They then took her and conducted a battery of skills tests, observed how she behaved, and made notes. They took the notes and worked up an eleven page report for us with scores in five areas:

• Gross/Fine Motor Skills
• Self-Help/Adaptive Skills
• Social/Emotional
• Academic/Cognitive Skills
• Receptive and Expressive Communication

The gave her scores for both her chronological age of four months and her corrected age of one month. For a four month old, it was no surprise that she scored below the normal range in all areas. Taking her corrected age into consideration, she scored fair in three of the five areas.

She scored slightly behind in Academic/Cognitive skills and Gross/Fine Motor Skills. They were checking how well she did playing and exploring, holding up her head, and using her hands. The specialists also noted in their report:

Kinley was alert but fussy during this evaluation.

They acknowledged that her history with reflux might have impacted her scores and possibly development in the past few weeks.

Still, the Motor Skills is a particular concern that we’ll have to watch considering the results of her MRI. A physical therapist will be coming by our house once a week for a while to help Kinley along with her motor development.

 

To finish off her busy week, Kinley had a follow up with her pediatrician. We checked her weight again — 4.5 ounces gained in the past week — and discussed all the changes of the past week.

Overall, things seem better with the new formula, reflux medication, and vitamins. Although she still gets fussy in the late afternoon, early evening, she’s nowhere near as uncomfortable as she was a couple weeks ago. The new formula has fewer calories and she’s still eating a bit less, but she’s gaining weight okay and looking healthy.

Kinley’s first physical therapy session went well. She was on the verge of being hungry, so didn’t last long and got a little fussy. But, the therapist showed us some techniques that had Kinley rolling from front to back and back to front — with just a little help. Like her neonatologist and others in the NICU, the therapist was surprised that Kinley had a brain hemorrhage considering how well she was doing.

Kinley’s eyes are doing better. Her retina specialist commented that her left eye is still behind her right in vessel development. The blood continues to dissipate and there is no traction. He was comfortable not seeing her for another month, but due to a booked schedule, she’ll be back in three weeks.

We were never able to find an off the shelf mobile for Kinley’s crib that we liked. So, we fashioned together our own using plush versions of the characters from Inside Out. She’s noticed them recently and seems to have found her favorite: Sadness.

When the blue emotion swings by, Kinley will often smile and coo at her.

No, we are not reading anything into her preference.

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Update: Kinley’s grandfather thinks she recognizes Sadness and is trying to cheer her up.

Mom went back to work this week. There were quite a few tears shed the first morning leaving Kinley with her sitter. Kinley also wasn’t too pleased with the change at first, but by mid-week, she seemed to have settled into the new routine. She was even all smiles coming home on Wednesday.

Just Kinley and I went on Thursday to get her third RSV shot. I’ll probably be handling all her doctor visits and meeting with her physical therapist for most of the year.

They ask us to stay at least fifteen minutes after the vaccination and then they check her vitals before we go. It was a full house in the waiting room, packed with several other premature babies and their parents — including a couple friendly faces from our NICU stay.

While Kinley was still complaining about being poked, I pondered with her out loud if she’s just going to associate me with shots and doctors growing up. The other parents found that funny.

She’s closing in on 11 pounds now, weighing 4.94 kg and measuring 56.5 cm.

Her physical therapy is going fairly well. She needs to build up more of her arm strength to help with her rolling.

Kinley had an appointment with her retina specialist on Wednesday afternoon, so we stayed home together.

In the morning I worked with her on her tummy time. Over two sessions she rolled over three times completely unassisted. Her head control is getting better and we think she might finally be starting to reach for things. I guess the physical therapy, and a little patience, is paying off.

We had more mixed news from the retina specialist and another follow up appointment in a month. Her retinas are fully vascularized now. As is often the case with babies that suffer from retinopathy of prematurity, her blood vessels have grown out in more of a straight line. Normally, the blood vessels have a bit of a curve to them. Thankfully, there’s no evidence that this growth pattern impacts vision.

The spot of blood in her left eye hasn’t fully dissipated, hence the follow up appointment. It has gotten better, but want to see it fully go away and be sure that it doesn’t result in any scaring that could lead to a detached retina.

Kinley had an action packed day.

She started off bright and early with physical therapy. She hasn’t been tolerating it well, which is concerning her therapist. She’ll get extremely fussy during tummy time and even worse when sitting on the floor. She’s also had difficulty self-soothing, so she’ll get incredibly mad about her tummy time that she has to be picked up, cradled, and given her pacifier. It could be her reflux or she’s just not physically ready yet. I think it could be she’s just not in the mood to do things when the therapist says it’s time. Her therapist is going to consult her colleagues.

Her next stop was pulmonology for another Synargis shot. There she weighed in at 5.85 kg (12 lb 5 oz) and measured 58.5 cm (23 in.).  In six months she’s grown ten pounds.

That afternoon we went to see her pediatrician for her six month check-up. She was definitely over appointments and shared her displeasure throughout the appointment. Her pediatrician was happy with her progress and noted that, for three months corrected, she’s pretty much right on target growth wise.

You hear your car make a funny noise, but it mysteriously goes away when you take it into the shop. Your computer won’t boot up, but all you have to do is get tech support on the phone and it of course works, no problem.

Kinley’s physical therapist brought in her supervisor to get another opinion and advice for Kinley’s tummy time issues. Kinley was all smiles through the entire session. Although she still needed a little help and motivation, she had no objections to rolling, laying on her tummy, or sitting up.

We’re going to bring more focus to her pushing up and getting her comfortable in sitting positions.

We probably don’t need to worry about Kinley’s rolling much anymore.

She’s started rolling completely on her own from back to tummy. She grabs both hands, sometimes shoving one in her mouth, crunches and brings her feet up, then wobbles back and forth before flying over onto her tummy.

She’s also started rolling in her crib all on her own in the middle of the night. It’s freaked us out a bit since we’re so worried about her being face down and having trouble breathing, but all has been fine. It’s scared her on occasion too as she’ll roll over in her sleep and wake up tummy side down.

 

Kinley’s retina specialist gave us, essentially, an all clear today and is referring her back to her opthamologist.

There is still what he’d call a “shadow” of where there had been blood on the retina. There is also some slight scaring, but no traction on the retina.

We’ll still have to monitor it to make sure the scar doesn’t start to pull on the retina. He also said that she’ll likely need some close monitoring when she gets older.

Kinley has her first cold virus. She’s had a bit of a cough and some bad congestion. Given all the warnings we’ve received, mom and I have been especially worried. The pediatrician isn’t too concerned since she’s handled it so well.

We unfortunately can’t give her anything to help with her cold or her apparent teething. Due to her prematurity, the pediatricians don’t want us to risk Tylenol or Advil hurting her kidneys.

We can use saline and help suck out the excess mucus. Our pulmonologist also recommended a cool mist humidifier — not something I expected we’d ever need in Florida. Otherwise, mom says “Suck it up, Buttercup.”

To make things even more interesting, our pediatrician has also told us to try going without Nexium to see if she can manage her reflux without it.

Yesterday Kinley got her flu booster shot. She handled it like a champion and barely flinched.

Her Synagis this morning was another story. This time out I had a difficult time consoling her. After her shot she started to turn red and I was concerned it was a reaction — but no, it was just because she got so riled up and angry about the shot.

Thankfully, this is her last Synagis shot of the RSV season and she won’t be getting more until September. We’ll still have to be careful and we have a follow up with her pulmonologist next month.

With Kinley reaching four and a half months corrected and her appetite becoming pretty insatiable, even with the rice cereal she’s been getting the last few weeks, Mom thought it was time to let Kinley try solids.

We went completely out of the suggested order and tried green beans first. She gave us a pretty funny look at her first spoonful, but she swallowed. We kept going and by her third, she was pleased with herself.

Her next two attempts didn’t go as well. She spit out more than she swallowed, so we’re going to wait and try again in a few weeks.

Kinley’s been dealing with some major sinus congestion issues for a while now. She had a cold at the end of December that lasted two or three weeks. She was clear for about a week before it fired up again, peaking this past week. Thankfully, we already had a follow up scheduled with her pulmonologist on Thursday.

He suspected a sinus infection and broke out the prescription pad. Antibiotics to start and steroids if they aren’t enough. In case she develops a persistent cough and wheezing, she also now has an inhaler and a special contraption that I remember well from my childhood asthma days: a mask attached to a chamber that we puff the medicine into.

It was obvious how miserable Kinley was, so she and I took a sick day Friday. She doesn’t care for her medicine much, but she’s definitely getting the rest she needs. On Friday she slept four hours more than usual thirteen.

She’s having a better today today. She’s all smiles and coos when she’s playing, even with her incredibly runny nose.

At the doctor’s office she’s still riding along the average weight and height for her corrected age — 7kg (15lbs 6 oz) and 64 cm (25 3/16 inches).

Kinley had her latest eye exam today back at her regular ophthalmologist. It was unlike any of her previous visits. She didn’t have to be held down and they didn’t have to use the speculum to keep her eyes open. Instead, she got to sit up and they used some flashing toys to help direct her attention.

She is looking great. Her ophthalmologist said there’s a chance that she might not even need glasses, but it’s too soon to really tell. She’ll have another appointment shortly after her birthday and then we’ll probably move to visits only once or twice per year to follow her progress.

The next big test will come around when she hits her teens and her eyes take big steps in growth and development.

After what seemed like five months of teething, Kinley finally cut her first tooth. Bottom right (left if you are looking at her).

Kinley has figured out how to blow raspberries. Her mom and her just had a long back and forth demonstrating their skills while mom dressed Kinley for bed.

And so it begins.

Kinley crawled today. I was making her evening bottle and mom was watching her play on the floor and suddenly, off she went, cruising about four feet across her play mat as if she’s been a pro forever.

We and her physical therapist were actually starting to worry a bit because she seemed to be having a really hard time figuring out what to do with her legs. She could get them up under her and she’d rock back and forth, but usually she’d just try to pull herself forward as much as she could and then lunge the rest of the way. That, or if she was on a blanket or similar surface, she’d just figure out how to pull towards her whatever she wanted.

Whatever had been running around daycare finally caught up with Kinley this week. She came down with a terrible fever that lasted a couple days and worried us.

Overall, Kinley handled it like a champ — better than I did when she happily shared her germs with me and knocked me out for a day and change. When she wasn’t sleeping, you could tell she was trying really hard to be happy and have fun. Unfortunately, the littlest thing would upset her — especially distance from us.  And she got pretty tired of us attacking her perpetually leaking nose with tissues.

After being fever free for a day, she psyched us out when suddenly she had a low grade fever again. All other signs pointed to teething, but we kept her home one more day to be sure.

A month to the day after we had to lower her crib because she had started sitting up own, Kinley’s starting to pull — or push — up around the house.

She has thought standing is just about the best thing ever for a while now. Usually, it was mom or I that would pick her up and hold her steady while she looked around with a huge smile. Now we offer her a little stability, but she has to do most of the work.

Her first solo success came leaning against and pushing up on little red, cloth storage bins we keep downstairs with her stuff. She’s definitely a little problem solver, using the smaller bin as a bit of a stepping stone to get her to the window sill or the couch.

Kinley saw the pulmonologist for a general check up and to plan ahead for next RSV season. As usual, she got a full weigh in and measure: 8.62 kg (19 lbs.) and 69.5 cm (about 27 3/8 inches). That puts her around the 70th percentile for weight and 50th for height.

Her doctor was very happy with her progress. We’ll likely start back up with her not-so-fun RSV vaccinations in September.

Kinley celebrated her first birthday today surrounded by her family and friends.

It’s been an amazing and often insane ride so far. It’s incredible to look back on all the challenges she’s overcome and how much she’s developed.