John is five pounds, two ounces! He is really growing. He averages an ounce each day; however, he surprised us a couple times this week with a growth spurt of two ounces. After completing two bottles on Mondays, he is now able to practice his feedings if he is wide awake. Typically, he drinks about 35 cc’s before he is tired and needs the rest via his feeding tube. We think that there will be a lightbulb that goes off and he will have the endurance to take all six feelings by mouth

John met with the CHOP cardiologist today for a consultation to review his three heart rate tests. His average heart rate is normal. There wasn’t any indication why his heart rate will fluctuate into the 200’s. The doctor did mention that it could even be discomfort from his feeding tube that could cause the increased rate. Overall, the heart rate patterns are normal and he will be re-tested in two weeks by the same cardiologist.

Our Johnny is 3 weeks old! He is approaching the big 5 pounds, weighing in at 4 pounds, 13 ounces. He is currently trying to learn how to eat with practice sessions twice a day. Like training for a marathon with no running experience, you start off slow and build up. Over the past week, we saw a gradual increase in the amount he could eat at each meal. He went from 12 cc’s last week to his complete feeding today of 54 cc’s! It was a great surprise that he completed his entire bottle, not once, but twice! The goal for the coming weeks will be to increase the frequency of his meals by mouth and still gain weight. They want to make sure he doesn’t exhaust all of his calories on eating! Once he masters the bottle concept, he is yet another step closer to coming home 🙂

In other news, the doctor’s noticed that Johnny’s heart rate tends to be high. Due to the episodes of drifting with shallow breathing, he was on caffeine for the first couple weeks. His heart rate was high, but that could have been a side effect of the caffeine. Now that his episodes are less frequent with maybe one or two a day, the doctors stopped the caffeine. However, his heart rate fluctuates, jumping to the 200’s beats per minute, then back to normal. Last week, he had an EKG and an echocardiogram. Both tests were normal. He is having a third test right now with a Halter Monitor, basically a 24 hour heart monitor. The CHOP cardiologist will review these three test to determine if there is a cause for his increased heart rate and if there is a follow up plan. Overall, he looks great and if he wasn’t in the NICU with a heart rate monitor hooked up to him, we wouldn’t even know that his rate tends to have periods where it is high. Until we hear otherwise, we are trying not to worry and continue to take one day at a time.

Last night, Johnny moved across the hall to the continuing care nursery. The babies in this portion of the nursery are nicknamed the “feeders and growers.” Johnny’s main focus over the next few weeks will be learning how to eat with the “suck, swallow, breathe” coordination. He is already making great strides this week with the growing. Johnny is now 4 pounds, 9 ounces. He is averaging an ounce per day! His new crib location is next to the nurses’ station, so they will be keeping a close eye on him. He has settled into his new environment quite nicely.
Johnny had quite the workout today. Each weekday, Johnny has an afternoon workout session with physical therapy with emphasis on stretching and relaxation. Today he had several reps of arm curls, neck stretches, and leg bends. In the picture below, he looks a bit confused, as the therapist had him in standing position. With discharge, mommy and daddy will be going home with instructions for stretches that Johnny will continue daily. Lucky, he seems to enjoy them!
Check out Johnny’s outfit de jour. Our little rock star knows his daddy rocks!

Johnny is two weeks old today and in a big boy crib! He has been in his open bassinet for a week, after maintaining his temperature in the isolate. He appears to be quite comfortable, swaddled with his two blankets and a warm hat.

Last night was bath night! It was a head-to-toe sponge bath. Surprisingly, he was very calm through the process. Afterwards, he got his official weight and length check for the week. Johnny is up to 4 lbs, 6oz. and 17.75 inches. After hovering around 4lbs, 1oz, Johnny started gaining weight a couple of days ago after the doctors started to fortify his milk. With the extra calories, he is heading in the right direction.

He is finally finished with his phototherapy sessions. Earlier this week, his billi counts increased and Johnny had to spend another day under the lights. Since he graduated from his isolate, the nurses used a phototherapy bed and wrapped Johnny in a blanket of lights. He was cozy with his electric blanket. As of yesterday, his billi counts went down and he won’t need to sunbathe anymore! As an extra bonus, he can now be held without a time limit. Mommy and Daddy have really been enjoying cuddle time with our little one! Also, he is able to sport wearing an outfit too!

Over the past week, Johnny has experienced episodes with shallow breathing and slowing heart rate. This is common for preemies, as their lungs are not mature. Thus, he gets a daily shot of caffeine. Although he is a good weight for a gestational 33 week baby, it is a reminder that he is still 33 weeks old and his lungs still need to become stronger. Additionally, the average development age to coordinate the “breathing, sucking, and swallowing” for milk is typically 34 weeks. This week, the doctor included two bottle attempts per day to slowly introduce Johnny to a bottle. He wasn’t too fond of working for his food until last night when Mommy feed him via a bottle for the first time. He ate a total of 12 cc’s. This is just shy of 1/2 ounce of milk. Currently, his feedings are now 50 cc’s, so 25% of his meal was via a bottle! In the coming weeks, the goal is to continue practicing so he can work up to an entire feeding from a bottle. He is already 25% there! Keep up the great work Johnny!

It’s hard to believe that it has been five days since Johnny’s birthday. If there is one word that best describes how we feel, it is blessed. Angie and I reflect on each day and we are amazed by the strength and well being of our little Johnny — and for that, we thank God.

We have each had the opportunity to hold our little boy twice now, and each time we reflect on how far he has come in this short time. Cuddle time with Mommy and Daddy is by far the one thing that he absolutely enjoys the most (a close second to food 🙂 ). It is remarkable to see how calm he is after thirty minutes of mommy/daddy time.

On Wednesday, Johnny started phototherapy sessions to bring down his biliruben counts. We suspect that he shouldn’t be under the lights too much longer, although it will be hard to see him have to give up his cool looking shades when the time comes :). Mommy was quite excited for Daddy to check out the new look. It is an understatement with how creative, thoughtful and generous the nurses are in the NICU with their ability to inspire a smile. As for the antibiotics that were administered earlier this week, they were able to stop those on Thursday, after three consecutive negative blood culture tests.

On Thursday, Johnny reached one of his first major milestones – breathing room air without assistance from the CPAP. It was great to see his nose free of medical equipment. Once he passed 24 hours of not needing additional oxygen, his nurse moved his feeding tube from his mouth to his nose. Finally, John is relaxed enough to close his mouth and breathe calmly via his nose.

The one test that had Angie and I a bit anxious was the ultrasound to determine whether or not there were any hemorrhages in his brain. On Friday, we were relieved to hear that the ultrasound came back clear and things are looking good.

After his birth, Johnny is hovering around 4lbs 1oz for the last couple of days. In that same period of time, the doctors and nurses have been adjusting his food accordingly. On Wednesday, he was at just 6 cc’s of food. Two day’s later, he’s up to 33cc’s! That is just over 1oz of food. We suspect that he will be all milk by the end of the weekend, as his IV for nutrition may be completed tomorrow. Go Johnny Go!

John was able to meet a few more family members – Uncle Tim and Uncle Mike 🙂 His grandparents were also able to see him again. Aunt Abbie is anxious to meet the little man, but she is fighting off a cold that she doesn’t want to expose it to the NICU.

Last, but certainly not least is an Angie update. Mommy has been inspiring through this whole experience. In less than 48 hours from when she started labor, she was discharged from the hospital and is hard at work providing for Johnny and Jimmy. Great job Mommy!

Thanks again everyone for your love and support. God Bless!

The Clarke’s