How is Kinley?

Mom being back in the hospital gave us an incredible vantage point for the Independence Day fireworks show. The ninth floor room’s huge windows faced Lake Eola where the annual festivities were held. But, her room sat empty.

Instead, naturally, we were downstairs looking into Kinley’s bright eyes as she happily sucked on her pacifier and had her belly filled.

Our little firecracker had already given us a bit of a show. We found her half hanging off of her bed when we arrived. She had managed to pull herself out of her swaddle and push herself a quarter of the way across her incubator. Trying not to disturb her too much before her hands on, we’d gently reposition her just enough that she wasn’t at the edge of her bed. We’d then close up her incubator, fold down her sheets, and step away. Minutes later, she’d be dangling off again.

Kinley let us have it once hands on started. Normally she is okay when I check her temperature under her arm, but tonight she fought and wailed. As I worked on wiping her face and cleaning her mouth, she grabbed her wires and pulled her CPAP tubes down over her face. During her assessments, we half expected her to climb out of the incubator through the port hole.

The nurse finally won the battle to contain her with a snug swaddle. On her way to my arms and dinner, we stopped off at the scale. Yesterday she had made a huge jump to 1443 grams, but tonight she had dropped ten. I suppose that after all her exercise, we shouldn’t be surprised.

Kinley came off the bubble CPAP this morning — a day earlier than expected. She is breathing entirely on her own now. She keeps grabbing and squeezing her now bare cheeks.

With as much time as she’s spent the past few days pulling her cannula out of her nose, sometimes stuffing it in her mouth, she’s probably been ready for a while to be free of the tubes on her face. But, protocol is to stay on CPAP until at least corrected 32 weeks because it would benefit her lungs in the long run.

It’s been a busy morning.

Just before 5:30am, mom was formally told what we and our nurses had deduced: she would be getting discharged today with a prescription for antibiotics.

About forty minutes later we got the call that Kinley would be moving downstream to Level 2, Pod 6. We rushed downstairs and were able to follow her over.

Level 2 brings a lot of changes. She now has a window, so she can start getting used to day and night. There is a bed in her room and we can stay the night with her. We also no longer have to leave during shift change. We’ll get a little less personal attention from the nurses since in Level 2 they each are responsible for more babies.

Kinley’s latest weight, 1491 grams, also got her close enough that they’ve switched her incubator to air control, so it will be up to her to regulate her own body temperature. This also means she can now wear clothes. If she manages that well for the next couple of days, she’ll be able to move into either an open bed or even a crib.

Kinley had her fourth head ultrasound this morning. The blood is significantly less. The ventricle has shrunk and is now only slightly larger than normal. Our doctor is very pleased and won’t order another until closer to her going home.

We received our first offer to move to the eleventh floor on Monday.

We declined.

Kinley had only been in Level 2 for nine hours and off of CPAP for a day and a half. Nancy had just gotten out of the hospital — for the second time — that morning. We still have errands to run out of the hospital, including picking our pediatrician and buying all our baby gear.

Everyone on the staff — receptionists, counselors, nurses — that knew we had turned down the eleventh floor looked at us like we were crazy.

Our understanding of the eleventh floor was still a bit lacking.

We knew the eleventh floor was only for the most stable of the Level 2 babies. We’ve seen it as the gateway to going home, with many of the graduating NICU parents wearing eleventh floor stickers. It was also further away from the doctors and Level 3 support, should it be needed. We didn’t feel ready.

Over the past couple days we asked more questions and had our counselor take us on a quick tour. It was better than expected.

We learned that they extend the eleventh floor offer to parents that are heavily involved in their infant’s care, yet all of the same support exists. The rooms are specially designed to both offer privacy for us and quick access for the nurses. There is a chair that folds out into a single bed, a recliner, private bathroom and shower so we can stay over more comfortably.

Today we missed our usual afternoon hands on so that we could take a baby care class. Afterwords we swung by to check on Kinley. While at her bedside, the charge nurse walked over to us. She said another family was moving out of the eleventh floor and extended a second invitation.

This time, we took it.

Continue reading Moving On Up

Last night was the weirdest slumber party either mom or I have ever attended.

No spin the bottle. No truth-or-dare. Just funny faces and messy diapers.

We spent our first night at the hospital with Kinley. I took the fold out chair-bed while mom got a roll away bed. Every three hours or so one or both of us were up to help with the usual hands on activities, including a 2:30 am bath and morning physical therapy.

Kinley is now wearing clothes and loves to watch her parents get her in and out of them. They’ll be weaning down the temperature in her isollete over the next week or so. Once she can maintain her own temperature for 24 hours with the isollete at 78°, it’s lowest setting, she’ll be coming out. There’s already a small bed in the room waiting for her.

To help her along, she’s also been going to bed with a hat. Her mother nearly had a heart attack when she woke at 1:15am to find Kinley had pulled her hat over her face, causing her heart rate to go up.

Her feeding tube has also been moved from her mouth to her nose because she’s due to start learning to bottle feed next week. With the tube out of the way, she’s started playing with her lips and making even more faces.

Although it is by no means a guarantee, her doctor expects she’ll be ready to go home in about two to four weeks. In addition to getting a handle on maintaining her body temperature and taking a bottle, she still needs to add on another half a pound and pass her car seat test.

With the prospect of going home on the horizon and mom finally feeling like a real person again, on Saturday we headed out to stock up on gear for Kinley.

Filling the car with gas and driving away was unnerving. Having lunch at sit-down restaurant for the first time in six weeks was slightly uncomfortable. It didn’t feel right to be out doing normal things.

Getting to the store and moving with a purpose helped. We printed our registry and commenced filling our shopping carts. Most of our big items — including the critical car seat — we had to special order.

We are both grateful for the generosity of friends and strangers alike that helped alleviate some of the sting at checkout.

Having hit what would have been thirty three weeks gestation, we got the go ahead to offer Kinley a bottle if she showed the proper cues prior to feeding — including rooting, sucking motions, or opening her mouth and extending her tongue.

She had an irregular morning and had no energy to try most of the day. But, at her evening hands on, she started to cue.

Giving our 38 day old daughter her first bottle was nothing like one might picture. Not only must Kinley learn how to suck, swallow, and breath, but her parents have to learn how to feed her.

The nurse helped us lay her sideline — laying her partially on her side in mom’s lap. We touched the nipple to her lips to give her a slight taste and then pulled it away. Her eyes lit up, she squirmed a little, and seemed to lick her lips and reach out with her mouth for more.

We’d put the nipple back to her lips, count out five sucks, then tilt the bottle to stop the flow and allow her to swallow. We also had to tilt her head to the side so that she didn’t start to drown in her meal.

This arduous process was repeated several times.

And it then it became too much for her. She forgot to breath. Her heart rate dropped and alarms started going off. The nurse quickly sat her up and patted her back gently. Her levels came back up.

We laid her back down and resumed. She started to suck less between pauses and we could tell she was getting tired. We stopped.

She had managed to get down 4 mL.

While we gavaged the remaining 30 mL, she kept looking at her mom with an animated face — opening her mouth and sticking out her tongue. She could do this, she said. But, after another ten minutes or so, she gave in and fell into a deep sleep. Her exhaustion materialized as a number of quick Brady’s and scary De-Sats.

We know this chapter of her journey home will be challenging, but we are quite impressed and proud of her.

Kinley earned herself a pass out of the isolette and into the open air bassinet. It is now up to her to regulate her own temperature. To help, she’s swaddled in two blankets.

Nurses checked her temperature every thirty minutes for the first three hours to be sure she could keep it up. So far, so good. They are keeping her isolette on standby with the heater running just in case.

Between the change of environment, the extra work, and the more frequent interruptions, she’s a bit stressed and thus fatigued.

Mom was a human pin cushion a couple weeks ago when she was admitted to the hospital for the second time. The nurses had to take a lot of blood for tests. To make matters worse, she was a “bad stick.” Her veins were still weak after the her big blood loss a month earlier. They’d collapse or blow, so they’d just have to poke her again. When her IV failed, they had it took three tries and a call to Rapid Response, their super nurse in triage, to get a new one in. Each time they jabbed her, she’d look away and squeeze my hand.

This morning was Kinley’s second eye exam.

Her first eye exam was held before we could get to the hospital. The nurses all cautioned us that the eye exams made for rough days for the babies, often filled with more Brady’s and De-Sats. But, when we got to Kinley later that day, she was doing quite well.

This time, we stayed the night. We were at her side when they administered the three rounds of drops to dilate her eyes. She squirmed a bit, but the nurse was impressed with how well she behaved.

Then the eye doctor and his nurse arrived. He dawned his fancy, black goggles and pulled out his special flash light.

Mom sat in the corner and I stood near Kinley’s bed as they started to administer the test.

Almost immediately, Kinley began to scream.

We’ve certainly heard her get pretty upset when she was uncomfortable or someone was poking at her. This was something else entirely.

I backed away and took mom’s hand. Tears filled her eyes and she crushed my fingers as each of her daughter’s screams stabbed her.

The doctor finished as quickly as he could, but alarms were already going off. He turned his light off and she fell quiet. While he and I discussed the results, the nurse lifted her out of her bassinet to stimulate her and get her heart and lungs working like the should.

The doctor still has to go back and compare results, but it looks like her retina’s are doing okay. He labeled them a stage one retinopathy of prematurity. There is a small devision between the retina and the supporting blood vessels. Nearly every premature baby exhibits some degree of this. Ninety percent of stage one cases resolve without any need for treatment.

We’ll check again in two weeks.

The past few days have been a blur, fast forwarding through an overstuffed calendar. I’m hitting pause to collect and catch up.

Kinley continued to have a rough day following her eye exam. Her heart rate stayed high into the afternoon. We left her to rest as much as we could, including skipping bottle feeding and pushing back her physical therapy. By her evening hands on, she was better, but still tired.

Wednesday mom had her six week follow up appointment. Her exam went well and test results came back good. To be safe, we’ll see her surgical team next week.

Thursday — after 36 nights — we moved out of the Ronald McDonald House. Here on out, we’ll plan on staying most nights at the hospital with Kinley and travel home once or twice per week.

None of us slept well Thursday night. Kinley was three days into her transition from breastmilk to the more difficult to digest formula. She’d voice her discomfort about an hour after each meal. Adjusting her positioning and just holding her more has helped.

At 1848 grams, Kinley has cleared the four pound threshold and that puts her another step closer to home. Remaining on her list:

• Take all of her feeds with her bottle.
• Consistently gain weight.
• No alarms for at least five days.
• Pass her car seat trial.

We have to be very careful with Kinley’s feeding tube, especially during a feeding. If it came out of place, her formula could end up getting pushed into her lungs instead of her stomach. Notches on her tube clearly mark how deep it’s been placed. Before each feeding, the nurse will use her stethoscope to listen to Kinley’s stomach as she puffs a little air down her tube and then pull it back out with a syringe.

Mom had a feeling last night that she couldn’t trust her daughter’s hands. She stood at Kinley’s bassinet for all 30 minutes of her 11:30 pm feeding, watching and playing defense — fending off grasping hands. When the nurse came back in to flush her feeding tube, she chuckled at mom’s intuition.

At her 2:30 am feeding, the nurse took extra measures to wrap up Kinley’s arms and swaddle her especially tight. She slept through her feeding without incident.

But then, at 5:00 am and shortly before her next feeding, mom and I awoke to some grunting and mild cries. We found our little Houdini had managed to contort herself into an impossible position — her hat over her eyes and second blanket over her face — and pull her feeding tube about eight centimeters out, all without freeing her hands from her swaddle.

Determination is not something Kinley lacks.

 

We spent the night away from the hospital so that we could tend to our dogs, who had been staying with a friend. We missed out on a pretty awesome leap forward.

Kinley’s nurses helped her make some incredible progress with her bottle feedings this evening. First she took 15 mL — three times what she’s taken previously and nearly half a bottle. At her next feeding, with some careful pacing over half an hour, she finished the entire bottle.

Upon returning to the NICU this afternoon, our nurse caught us in the hall. She said that Kinley must have seen us leave last night and decided she needed to go home, too.

Late this morning, Kinley took 15 mL before tuckering out and having to have the rest gavaged. Then, at her first afternoon feeding, she happily gobbled up 45 mL — 7 mL more than she was scheduled to get.

With that, she’s been advanced to variable feeding. Instead of being on a strict three hour feeding schedule, they’ll let her feeding times fluctuate within a two to four hour window as she desires. Her target volume will still be the same. The next step is ad-lib, where she basically takes what she wants, when she wants.

At this rate, we could be all leaving the hospital together near the end of the week.

Kinley’s streak with the bottle petered out on Monday. The general opinion is that she took on a lot quickly and then exhausted herself. The nurses say they see this a lot. This isn’t a new pattern for Kinley, either.

She definitely seems to have a handle on suck-swallow-breathe and paces herself pretty well. She just needs to build her stamina.

After a few attempts where she quit at 15 – 20 mL, we decided to only offer her the bottle every other feeding or if she was very alert and showing strong cues. Otherwise, we’d gavage and let her sleep. This seems to be working so far.

And, despite all the extra energy she is now expelling, she continues to grow and add weight. She is now 1934 grams.

Mom had what should be her last follow up today regarding her surgery. All looks good.

Last night mom made a trip home. She left Kinley and I to hang out all night, just the two of us — and all the nurses and technicians.

We kicked off the evening with a three hour kangaroo session. As she often does, she spent the first several minutes looking up at me before falling asleep.

We followed that with a bottle feeding that she nearly finished. She had so little left that nurse opted to slowly push the last 5 mL in manually. All went smoothly.

When I returned at 11:00 pm from my own dinner, I expected we’d give her a break and gavage the 11:30 pm feeding. But, Kinley was already bright eyed, cueing, and once again tugging away at her tube. I followed her lead and the nurse made us a bottle.

She was definitely hungry. After about ten minutes, she started closing her eyes while still sucking. I likely let her go a little too far. She looked fine, but I noticed a minor change in the way her body felt in my arm a second before the monitor dinged when her heart rate dipped. I sat her up, gave her a little rub, and she came back up pretty quickly.

It took a while to get both of us comfortable again. We were both probably a little uneasy after the minor Brady. After a brief second round, I thought we might have to call it a night. Her thirty minute window was almost over. We had a little chat and tried for round three. And she went to work. Not only did she finish, but I had to wrestle the bottle back. I laid her back down with a nice, milk coma look on her face.

We gavaged the next two feedings overnight since she didn’t stir or cue prior to either. We both slept through the night. Mostly.

At around 3:15 am, just after her latest feeding, her cries woke me up. Her heart rate shot up to over 200. Even though my heart screamed at me to pick her up, I dared not. I didn’t want to jostle her around too much on a full tummy. More importantly, I knew that I was exhausted and it would too dangerous if I sat and held her. I spent several minutes containing her, holding her in her bassinet, and talking to her softly until she calmed. When I dragged myself back to bed, I repositioned so that I was in her line of sight and closer. We both closed our eyes together until mom snuck back in ahead of the sunrise.

In preparation for taking Kinley home, we needed to get mom’s car cleaned. I checked around and, being familiar with the detailing services at David Maus Toyota, I settled on the nearby David Maus Volkswagen South. Just being conversational, I let our service advisor know why we needed it cleaned. Two days later we dropped off the car.

They finished an hour ahead of when they promised, allowing us to get back in time for Kinley’s next feeding. Mom’s car was cleaner than the day she bought it brand new. And the kicker — an attention to detail and thoughtful act that, honestly, makes me tear up: from a chat two days prior, the service advisor remembered why the car was being cleaned and he specifically instructed the crew to not use any fragrance because he was concerned strong scents could irritate our little girl.

Yes, I realize that getting emotional over, effectively, a car wash is pretty ridiculous.

Between Thursday and Friday, Kinley managed to set a new record of seven successful bottle feedings without needing to gavage any. And then things got, in the words of her mother, “all jacked up.”

For the last week, she had been on a flex feed schedule that worked like this:

• Consume 27 mL or less by bottle and the nurse would have to gavage the rest until she received a total of 38 mL.
• Consume 28 mL to 38 mL by bottle and she got to skip the gavage.
• Consume more than 38 mL by bottle and she’d earn an extra hour of sleep between feedings.

Over the course of her streak, Kinley always awoke hungry and was able to get down between 30 and 35 mL.

The streak ended when she was only able to get down 20 mL before she started to fall asleep. But, at the same feeding, the nurse practitioner dramatically changed her flex feed schedule. Now she had to consume at least 40 mL, one way or another.

At her next feeding she only took 25 mL before we ran into her 30 minute time limit. She was wide awake at the end, but uninterested. Three hours later, she did not want to wake up, so we gavaged. Two hours later, she woke up, acting hungry, but still was an hour away from being allowed to eat.

Our night nurse heard our concerns and called up the nurse practitioner on duty. She agreed that the jump was a bit much and readjusted the schedule to make it more incremental. 35 mL is the new minimum and 45 mL earned her an extra hour of rest.

Coincidentally, Kinley finished her next 50 mL bottle.

The NICU life and the stress of the bottle feeding process started to take it’s toll on us. Our tempers were getting a bit shorter and tears were coming a bit more freely.

For a while we’d talked about going out to dinner and finally seeing Inside Out. We thought it was time to do that.

Early Saturday afternoon we packed up our laundry and headed out. We stopped off for a little baby gear shopping and a quick lunch. We arrived home and I got to finally see the awesome job our friends had done to help us get the house ready for Kinley. Mom fired up the first load of laundry and then we both essentially collapsed. We were exhausted.

Date night would just have to wait.

In the wee morning hours, Kinley once again declared that she was done with having a feeding tube up her nose and taped to her face. On her second attempt, she successfully pulled it out. The nurses let her have it her way and, so far, it is still out.

Our favorite level two nurse recommended us for a couple feeding changes and our nurse practitioner signed off.

First, she’s been switched off the high calorie, high protein formula that has been brutal on her stomach. Now she’ll get the normal premature formula that she’ll go home on. We’ll be monitoring her weight to see how she does.

Second, she’s gone ad lib. Kinley now gets to call the shots on when she eats and how much. She just can’t go more than four hours without eating and has to intake a minimum volume for the day.

If she can meet all the benchmarks, she could be punching her ticket out of here soon™. But, there are a couple procedures coming up — including her third eye exam — and we hope they don’t set her back.

Kinley’s third eye exam was this morning.

This time she didn’t respond well to the drops. Her heart rate dropped shortly after the first round was administered, but she recovered on her own.

Mom knew she couldn’t bear to be in the room this time. We escaped down the hall for breakfast while we waited. On our way back, we saw the doctor heading for Kinley’s room. We scrubbed in and found a vital monitor on the opposite side of the pod from her room. As Kinley cried out, we watched her heart rate climb until the alarms started to ring throughout the pod. After a minute or so, the cries subsided and the alarms stopped.

Our nurse popped out and invited us into her room. Tears streamed down mom’s face as she rushed in and the doctor’s assistant handed Kinley to her.

The diagnosis was very similar to the previous exam. Her retinopathy of prematurity is still classified as stage one. The doctor didn’t expect improvement in only two weeks, but he wanted to be sure it wasn’t getting worse.

Kinley recovered better than we expected from the exam this time. Her heart rate and oxygen levels stayed close to normal. She did pretty well with all her bottle feedings throughout the day, though we generally let her sleep more between each.

Late in the day we noticed the deep, outside corner of her left eye was blood shot. We’re told it should be okay, but they’ll watch it.

After two days of ad lib, doctors decided Kinley wasn’t intaking enough and moved her back to a flex feed schedule. She has to consume at least 40 mL every three hours. If she takes 50 mL, she can sleep an extra hour.

Even still, she gained 30 grams since yesterday, putting her at 2069 grams.

Kinley had her head MRI tonight — a follow up to track the brain bleed spotted in past ultrasounds.

After she finished her first evening bottle, nurses and a technician began preparing her. They loaded up a portable bassinet with supplies — everything from a pacifier to a couple emergency respiratory kits. Her leads were removed and she was changed to a button free shirt. She was swaddled and placed in an immobilizer — a bulky, blue padded contraption with buckles. Washcloths were rolled up and placed on either side of her head. A portable monitor was connected to her pulse oxometer. Finally, we rolled out.

After a stop at reception to disable her security bracelet, we road the elevator down to the third floor NICU. We stopped to pick up another emergency kit and strap Kinley in. The nurse snapped the buckles of the immobilizer and pulled the straps tight, forming a snug cocoon. We then rolled through our old Pod 1 on the way to the bridge that connected us to Arnold Palmer Hospital.

We wound our way through the old halls, not nearly as posh as those of Winnie Palmer Hospital, to the MRI room. I chatted with the technician about the procedure. Mom said goodbye to her daughter and we were lead down the hall to a waiting area.

Kinley fell fast asleep and they were able to fly through the MRI in thirty minutes without any retakes.

We’ll likely have results tomorrow.

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.

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.

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

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.

 

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.