Mom had to have an emergency cesarean late this morning followed by a difficult surgery. Our baby girl came out crying, which is a good sign.
Mom and baby girl are both doing very well, all things considered. The doctors and nurses keep commenting how strong they both are.
Mom, still in ICU, finally got to see and say hello to her daughter, a floor away in the NICU, with Skype in the early morning hours. Sweet baby girl now has a name: Kinley Mae.
This morning we awoke to find that Kinley’s lungs had tuckered out and the NICU staff had to quickly work there way up in levels of helping her breathe. As the day progressed, they slowly started to ween her off some of the assistance, starting with the amount of extra oxygen and other gasses she was being given.
We were told that this assistance isn’t all that uncommon. Kinley’s long journey home will likely be filled with hills and valleys. We’ll have to stand back and look at the overall trek and be careful to not to get too engrossed on individual steps — often it will be two forward, one back.
As a family, we did make progress today. Mom managed to get out of bed and eat a little something and these milestones earned her an afternoon wheelchair trip to see her daughter. It was moving to have our family together for the first time.
Late this evening, we graduated from the ICU to a standard recovery room.
A wave of nausea hit mom pretty hard at about 3am this morning. My every attempt to comfort her seemed to make things worse. Feeling completely helpless, I left her in the nurses’ care and made my way down to the NICU. As I wandered in with an expression of exhaustion and defeat in the wee hours, I clearly surprised the NICU nurses. I was given a chair and I rolled up to Kinley’s incubator.
I spoke to her and probably cried a little. I complimented her on how beautiful she was. I gave her updates on her mom — mostly just the good stuff. I confessed how I felt and I promised I’d do better. I told her to keep fighting, but behave for the nurses and the machines.
After an hour, I started to have trouble keeping my eyes open and sitting up. I decided the nurses probably wouldn’t want to pick me up off the floor, so I made my way back up and found mom sleeping peacefully.
Overnight, Kinley was able to be weened off most, but not all, of her breathing assistance. She’s also started getting a little milk, which seems to be agreeing with her.
I was able to visit Kinley for another one of her hands on sessions today. She wasn’t the least bit impressed with the disruption to her slumber. She didn’t terribly mind getting cleaned, but she kicked her legs when the nurse moved her oxygen monitor and tried to push the nurse’s hand away while she got changed. Although it was difficult to see and hear her cry, I found her feistiness more adorable than anything.
Later in the day she did have a bit of an episode and needed to be calmed down with a little sedation and pain medication.
The NICU called this morning. In the few minutes we were put on hold, waiting for the doctor, we flashed through a range of emotions. Thankfully, it was simply an update and a little news.
Kinley’s bilirubin level did get high enough that she’s being given phototherapy. This was expected and not terribly unusual for the circumstances. Otherwise, she’s doing very well.
We started to get a little concerned about mom last night. She hadn’t really eaten yet, so she needed electrolytes. Labs showed we might need more blood, but we’re trying iron first. She got a good night’s sleep and is a different person this morning. She’s been able to put away a little food. After a long walk, I left her in a chair by the window. I turned around for just a minute and she was up on her own, opening the tall, heavy curtains.
We hope to roll down to see our daughter together shortly.
It has been a good day and tearful evening.
We rolled down for a visit early this afternoon. When we arrived, mom said hello to her resting daughter. Kinley’s heart rate, prominently displayed above her incubator, jumped up for a moment and relaxed. I rounded the corner, fresh from scrubbing in, and greeted my girls. Her heart rate rose slightly, relaxed, and she slept.
I planned our next five hours — meals, naps, walks, and all the other necessities for mom — so she could fit in a second visit. We hoped to make it for another hands on to see her active and mom told me to bring the camera this time. I was a bit embarrassed due to the sensitivity of the environment, but I obliged.
Despite our efforts, we missed the hands on. Still, I listened to mom, shook off my inhibitions, and took a few photos of Kinley. Then the nurse came over with an idea.
Mom would hold her daughter for the first time.
Standing on opposite sides of the incubator, the nurse coached mom as she slid her hands cautiously into the chamber. And then, separated for four days by an elevator, security checkpoint, winding hallways, and a thick plastic box, there they were… lifting each other up.
Kinley cried. Mom cooed and calmed her. Then mom cried and smiled. I focused on recording the moment… and cried later.
Kinley’s bilirubin is down enough that they were able to discontinue her phototherapy — no more tanning bed. Her umbilical IV has been removed and, because she is doing well on her feeding and everywhere else, they just put in a standard IV rather than braving a PICC line. Big tests are coming up later this week.
Mom just needs to eat a bit more and she’ll be golden.
We are both finding a rhythm, which is reducing our stess a little and allowing me to check items off my list.
With her umbilical IV removed, Kinley was eligible for “kangaroo” — sometimes called ‘skin-to-skin’ — where she would actually be removed from the incubator and placed on her mother’s chest. I shared the news with mom and her face lit up.
“Really?” she exclaimed.
The excitement carried her through the rest of the day. She nearly ate a full lunch and she had a smoother stride on her walks.
When we made it down to Kinley’s bedside this evening, the nurses had a recliner waiting for her.
Kinley was clearly right at home with her mother, positioned so she could feel her mother’s heartbeat and breaths again. It was the calmest I’d seen either of them.
Mom is out of the hospital.
We were thankfully accepted by the nearby Ronald McDonald House. This will keep us closer to Kinley. It will also be safer for mom, who shouldn’t be in a car right now. Even a small fender bender could be dangerous after her surgery.
Kinley moved down a level in breathing assistance. She’s now back on CPAP, which helps push air into her airway while she handles all the breathing.
Her bilirubin levels are going back up, but aren’t so high that she needs more phototherapy yet. Our nurse last night said we could expect a bounce like this.
Like mom, she continues to eat a little more each day.
The doctors found evidence of bleeding in Kinley’s brain. It isn’t active and it isn’t likely that she’d get another one. It probably happened at birth or the morning after when she was having so much trouble breathing. On a scale of one to four, with four being the worst, Kinley’s bleed is a three.
The biggest fear is that the clots don’t dissolve well or break off and cause some blockages. This could lead to swelling. There are several measures they can take, but the best right now is to proceed as normal, watch closely for certain signs, and have another ultrasound in a week.
Our nurse today said this bleeding is very common and that this doesn’t really mean anything yet, just that a risk is present.
They both emphasized that Kinley’s not showing any other signs of trouble. She is acting perfectly normal for how early she was born. The doctor said, except for this, he considers her progress above average for her age.
She was getting a little more phototherapy when we visited her this afternoon. She kept lifting her little eye mask up, peaking at us, and pulling it back down. She loves to stretch her legs, as mom can certainly remember.
Mom is staying positive. “A small hurdle,” she says.
I had a date with a beautiful lady last night. I met her at the intersection of Bliss and Terror.
I gave Kinley a bath.
We both survived. She actually behaved better for me than anyone until the nurse told me I shouldn’t be slow. It’s better if we are in and out as fast as possible. So, I made her mad. Real mad. And I’ll just leave it at that.
Then we got to kangaroo. She spent the first few minutes looking up at me. She rested quietly. I could feel her warm, little body on my chest. She’d move her tiny hands back and forth. When her feeding was done, she got the hiccups and would squeak every few breaths. They went away a few minutes before it was time to go.
After the news of the day, I really needed that.
Tonight I told Kinley she wasn’t allowed to be a Blackhawks fan. I said that we are Lightning fans, but that the Flyers were okay, too. When I said Flyers, she let out a cry.
When I started writing here, it was to keep our loved ones informed and at the same time reclaim time with my family from the flood of texts and calls. I thought I’d keep it simple and focus on our recovery.
It has evolved into more, including a story we’d want to keep and reflect upon in the years to come. Mom has asked that I go back to the beginning, and share a little more about how we got here.
It’s kind of appropriate that I start writing this while we wait in the same lobby where our hospital stay began. This time we’re here for a post operation follow up. Last time, it was simply a couple drops of blood.
Kinley continues to impress. A few of her past nurses swing by to check on her when they are on break from other assignments in the NICU. Some have confessed to fighting to have her.
Her expressions are getting hilarious. She loves to raise her eyebrows. She’s keeping her eyes open more, when she isn’t yawning.
Phototherapy was discontinued yesterday after good bilirubin levels in her lab work. Looks like her bowels are doing their job. Today they were able to lower the pressure in her CPAP to the lowest standard level. Despite the progress, she’ll probably be getting that little help breathing for another few weeks.
Her measurements are all looking good, including those of her head to check for swelling. She’s added on 70 grams over the last two days, putting her close to her birth weight.
After her hands on today, mom started tucking her in before we left. Kinley grabbed her mom’s finger and held on. There was no leaving for mom now. No matter how exhausted she already was from the walk to the hospital or her busy afternoon, she stood there and watched her daughter sleep.
Mom and I executed our first successful diaper change Monday. That seems like a ridiculous milestone for 11 days old. But, we were thrilled. In and out without taping over any wires, alarms going off, or a mess.
We’re also getting a little more comfortable with some the premature quarks. When Kinley’s heart rate drops 50-70% for a few seconds, which it seems to do once or twice each time we kangaroo, we don’t go racing out of her room hollering for a nurse. Instead, we rub her back and give her a few seconds to come back up on her own.
We are a tad concerned that we’ve noticed her average resting heart rate increasing over the last few days. We may just be allowing ourselves to get fixated on the monitors too much. They say it’s still within range, but that they’d keep an eye on it.
Mom has been pushing herself hard the last few days to make sure she made it to visit Kinley twice each day. With the help of our social worker and nurses, she’s finally admitted that she may have pushed too far. She’s exhausted.
When it was time for our evening trip to see Kinley, with tears in her eyes, she asked me to go without her. She was just too tired and knew she needed to take care of herself now.
When I arrived, I found Kinley sprawled out in her new favorite position that the nurses have dubbed “superman-ing.” One arm forward over her head, the other tucked under her. One leg tucked under and the other stretched way out over the edge of her bed.
I took Kinley’s temperature and weighed her — 1092 grams, an improvement. Our nurse held my iPhone so we could FaceTime with mom while I gave Kinley her first proper bath in a tub. I changed her and connected a fresh set of wires for the monitors. Then it was time to kangaroo.
Kinley sprawled out on my chest while her belly was filled. I did what I could to ignore the monitors and relax with her. The nurse popped in to check on us several times. I listened to and felt her breathe, occasionally letting out a faint squeak. The next thing I knew, the nurse was waking me up
No. Not us. Not yet.
I had to make a run to the hospital this morning while mom slept. Following mom’s orders, I stopped in the hospital cafeteria for my first breakfast in a week. As I was nursing my coffee and thinking about the days ahead, I looked out the tall, glass windows to the entrance to the hospital and saw a familiar face.
A fellow NICU family, one we happened to meet two months ago here, was loading their car. They were finally going home.
The father’s expression of relief, complete with a relaxed smile, is one I look forward to wearing.
We spoke to Kinley’s doctor this morning. He was happy with her latest blood test results. No swelling. Her HeRO scores, a composite grade of her vitals, are okay. They generally like them to be a little lower, but her trend is consistent, which is good.
I asked again about her heart rate. They aren’t concerned right now. They expect her to get a little anemic. Her red blood cells will die off faster than she can produce them. In about six weeks, her marrow should increase production. She may need some iron or even later a transfusion, but she’s far away from that. They’ll leave her be unless she starts showing other symptoms.
More and more information for us to absorb. Most importantly, they say Kinley is looking good.
Thursday is becoming the hardest day of the week.
Kinley’s second ultrasound came back this morning. The blood clots are shrinking. But, the ventricle is slightly larger and that could indicate a small blockage. Our doctor also noted that they saw a tiny spot on the left side of her brain that could be blood, but they aren’t sure and it’s something that they’ll have to watch.
Her fontanelle is still soft, so no swelling. She as looking and behaving normally. Both good things.
She’ll have another ultrasound in a week.
Our nurse the other night commented how stable Kinley was and that really she just needs to “grow, grow, grow.”
And so she has. Her weight has been increasing steadily over the last few days. She’s now up to 1160 grams as of late last night. The doctor continues to increase how much milk she gets at each feeding time.
They checked her red blood cell count this morning and the results were good. There has been only a minor decrease in the last ten days, but she isn’t anemic and her doctor was pleased. Her heart rate has settled down back into the 160s.
Today everyone is wishing me a happy Father’s Day. I smile and say “Thank You.”
I appreciate the recognition, but really, it is I that should be recognizing all the countless friends, family, and strangers for helping me care for my family right now.
Thank you to all the doctors, nurses, and the rest of the Winnie Palmer Hospital staff for healing my girls. Thank you to the Ronald McDonald House staff for allowing our family to stay close and to the generous volunteers making sure we stay fed.
Thank you to our incredible friends and wonderful neighbors that have stepped up to look after our puppies and our home while we are away.
Thank you to the friends and family that have traveled hundreds of miles to be there for us. Thank you for all the prayers, thoughts, well wishes, and support from afar.
And Thank You, Kinley. Thank you for letting me hold you today.
While mom held her today, Kinley took a pacifier for about two thirds of her feeding time. She held it up to her own mouth and sucked on it a little. Mostly she just played with it.
In the coming weeks, she’ll have to learn how to suck, swallow, and breath together. Until then, a tiny tube takes her meals straight to her stomach.
Kinley had no trouble this afternoon, but lately we’ve noticed she’ll Brady — where heart rate drops significantly — about 30 minutes into her feeding time. We had feared it only happened when we held her and that perhaps she was just getting too relaxed. However, now we’ve also seen it happen when she’s been fed in bed. The nurse today said it could be a minor reflux, though she rarely spits up.
Otherwise, she continues do well. She weighs 1217 grams as of last night.
Kinley is now 1250 grams.
She’s also between diaper sizes. She was in the “extra small preemie”, which is not the smallest size available. It started to leak as she got bigger. Being a little wiggle worm and loving to kick out those long legs of hers probably didn’t help keep her bed dry.
So we moved up to the “small preemie”. They still aren’t much bigger than a deck of cards. She nearly swims in these. We have to be careful that they are not too loose because that would be bad for her hips.
If you see a beautiful brunette perched atop the one fluffy cloud in this storm that passed over Orlando tonight, stretched out and glowing, that’s surely Kinley’s mom.
We walked in for hands on tonight and found our girl wide eyed and waiting for us. Her bed’s temperature alarm was going off, so I jumped in and took her temperature. Not a fuss and all good. She watched us. She’d yawn, stretch, and play with her feet.
Kinley would look at her mother and crack a mischievous smile.
She kept tugging at her cannula until her respiratory therapist had to swing by and retape it.
We got her weighed and changed. And then it was time for her to have dinner and us to go. Or so we had planned.
We had already taken her out to kangaroo earlier in the day and mom didn’t want to put her through too much. Our favorite nurse insisted it would be okay to hold her again. Surprisingly, mom didn’t take much convincing.
The nurse swaddled Kinley and tossed on her hat. Mom sank into the chair beside the incubator. The little, pink bundle was gently lifted from the incubator and placed in mom’s waiting arms.
The beeps and boops, tubes and wires, all faded away. There were no tears this time. Mom just looked down with a smile and Kinley looked up in amazement.
Kinley’s ultrasound report came back pretty much the same as the previous week. The blood continues to dissipate slowly. The ventricle is the same size as last week. It would be better if it was smaller, but it’s great that it hasn’t gotten any bigger. The radiologist didn’t note — and thus likely didn’t see — the tiny spot they had seen just outside the ventricle in the last two ultrasounds. Hopefully it’s gone.
Her fontanelle continues to be soft and her head is only half a centimeter larger than it was a few days ago.
Her doctor is very pleased with the radiologist’s report and how she’s progressing. Unless she presents any symptoms that make him concerned, she likely won’t have another ultrasound for ten to twelve days.
We also spoke to her respiratory therapist for the day. Based on how well she’s been doing, he expects she’ll have no trouble coming off her CPAP in about a week and a half.
Kinley made our visit this evening interesting.
Shortly after we arrived, she Brady’d. Then her heart rate shot up from her usual 160s to well over 200. She squirmed, but didn’t cry.
I performed a contain — putting my hands on either end of her and holding her snug. She was breathing fast. Heart rate was still over 200.
With an okay from her nurse, tending to another baby, we went to work. I flipped her and mom helped me change her soaked diaper. Still over 200.
I checked her temperature. A nice 98.1. Mom talked to her and I showed her how to contain her. Alarms kept going off. Still over 200. I started to get concerned, but Kinley still wasn’t fussing.
The nurses arrived and flew through her assessments. She didn’t appreciate that much attention.
I wiped down Kinley’s face and she behaved perfectly. The nurse cleaned her mouth and she fussed.
After a mild hesitation, we decided to swaddle and hold her.
As soon as she was out of her incubator and in her mother’s arms, Kinley’s heart rate dropped back down to the low 180s.
While she was fed, her heart rate and breathing slowly returned to normal. She happily sucked on her pacifier until she fell asleep.
Kinley had put on quite the show.
After sitting for a while, mom started to worry. She felt embarrassed that I had taken care of so much.
“Will I ever get the hang of this motherhood thing?”
She started to cry.
I came over and gave her a hug and reminded her that no matter what I had done, Kinley wasn’t content until she was with her.
With that, Kinley peaked out of the corner of her eye and looked at us with an expression of mild annoyance as if to say “Seriously… You people…”
We struggled to contain our laughter.
We know they are necessary, but these infernal machines can also sure make things difficult.
The CPAP that helps her breath has three tubes. Four wires monitor her vitals — heart rate, oxygen saturation, and breathing. A fifth wire connects to her incubator to help it regulate her temperature.
I’ve started helping to take Kinley in and out of her incubator. The tubes and wires catch on everything.
The air coming through her CPAP is mixed with water vapor so it isn’t dry. Water will sometimes condense in the tubes, especially when she’s out of her incubator where the air is cooler. If not all positioned just so, the water might not drain out properly, creating pressure and setting off an alarm. It can even get pushed into her nose.
One more week and she might not need the CPAP anymore. We’re definitely looking forward to that.
Her vitals monitor is hypnotic. We’ll get captivated by the numbers, anxious for the unexpected change. It’ll beep and our heads will spin around, only to find it’s an alert for another baby. It is, for us at least, a frustrating crutch that we’ll have to somehow learn to make do without when she comes home.
Just about the only machine I do like is her scale. Kinley weighed 1323 grams last night; 273 grams (26%) more than at birth. Another 500 gets her a step closer to home.
We came in today to find our girl had graduated. Kinley was moved over night from the more critical Pod 1 to the intermediary Pod 3.
She now has her own room, but the nurse that walked us down suggested we ask for a shared room with a window so that she can get used to daytime and nighttime.
We are pretty excited for her, but also sad that we might be loosing one of our favorite nurses. The nurses usually stay with their pods. However, we have already seen several familiar faces in Pod 3.
Kinley had her first eye exam this morning.
It started with a series of eye drops being administered over a period of three hours. Then the doctor came by to examine her. He paid close attention to her retinas.
The results came back positive. Her eye development is premature, which is of course no surprise. Thankfully, no other abnormalities were spotted in her retinas and the related blood vessels. Her next exam won’t be for another two weeks.
They say the eye exams, with the pupil dilation and tests, usually make for stressful days for the babies. To help, they keep her room extra dark. Kinley is taking it all in stride.
Kinley weighed 1367 grams tonight. For the metrically-impaired, we’ve just crossed the 3 pound mark.
Her feeds have also been increased today to 30 mL.
We continue to pick up on more of her cues.
We can definitely tell she’s hungry when we show up for hands on. She’ll look at us, open her mouth, and start making a bit of a sucking motion. Today we even tried putting a little milk on her pacifier. She was thrilled, until we took the pacifier away so we could get her out of her incubator. She opened her mouth wide and stuck her tongue out.
We’ve also started to read her squirms and sounds shortly after her feeds end. We used to worry she was just ready to leave us and go back to her bed. But, we can now tell when she’s just making room after her meal.
Mom is back in the hospital and has a minor procedure coming up.
Her temperature was a bit high Tuesday evening. 100.3° F; barely a fever. Wednesday morning it had come down to normal and then went back up to 100.5° F in the evening. That, plus some discomfort that has persisted on her left side, warranted a trip to triage. We stopped in after visiting Kinley last night.
After an inconclusive ultrasound, our doctor ordered a CT scan. The radiologist found that her body had healed around a small pocket of fluid on her left side, trapping it and forming an abscess.
She’s been admitted and will be staying one or two days. As a precaution, she’s getting a few different antibiotics by IV. During her stay, possibly today, she’ll go on a trip to interventional radiology at the bigger hospital across the street where doctors will take a big needle and, with the help of an ultrasound, drain the fluid.
After two days of almost no sleep or food, plus a little chaos, we have a new plan of care for mom.
The hospital has been a madhouse and overflowing with deliveries the last few days. They had to send us to the floor with moms waiting to deliver because the floor for post operative moms was full.
As the day wore on, it became clear that the plan of care developed by triage was in jeopardy. The specialists they wanted us to see were clearing out for the holiday weekend. Trying to get answers from our Wednesday and overnight doctors, all presumably tied up with deliveries, was flat out infuriating.
Our attendee, basically the doctor our other doctors report to, stopped in this morning and took the time to hear our concerns and answer our questions.
A few hours later, a specialist had been cued up and we were taken for a second ultrasound where we got some bad news.
The abscess wasn’t drainable and might require surgery.
Time for a new plan.
The doctors decided to keep her on the triple antibiotics for at least a couple days to see if those alone could clear it up. And they just might. The pain on her left side has decreased a great deal over the course of the day.