Five Pounds

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.

 

Three Weeks

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.

 

Moving Day

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

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!

And, there’s Jimmy :)

While this week has had us quite busy with Johnny, Jimmy has been a great big brother! The blog updates have been quiet recently, but stay tuned for some updates from the last couple of months.

As of today, Jimmy is 18 months! Running laps around the house, pointing to everything, shouting for Dad, turning the light switch on and off, dancing, and sharing his goldfish with Dunder Dog are all part of his daily activities. He really enjoys playing with his basketball hoop. It is always a surprise what he dunks. It ranges from his toy shovel to the pretend corn-on-the-cob. He also likes cars and will make the corresponding sounds of “vrooom.” When he isn’t playing basketball or cars, you will find him busy at his picnic table creating art. He love coloring and most of the time it is in his coloring books. He accidentally worked on some wall murals in our family room. We welcome any advice on crayon removal from walls! At school, Jim creates some masterpieces. He is always eager to show off his gallery in our kitchen.

At school, they use basic sign language. Earlier this month, Dad was sharing his yogurt and asked Jimmy if he wanted more. Jimmy surprised us in his response – sign language for the word more. We were all excited, and in turn James was very excited that he was able to communicate with us and has been asking for more quite often! Since then, Grandma and Grandpa have been showing Jimmy YouTube videos of baby sign language. He might even pick up a few more words!

With mommy on bed rest at the end of her pregnancy, we had to adjust Jimmy’s bedtime so he would wake up earlier for school. Daddy started new bedtime rhythms to get Jimmy to bed earlier. This includes brushing the teeth, blowing kisses, and pointing upstairs. We have been very lucky that he goes right to sleep with no fuss! Way to go Daddy! We are hoping this a pattern that will continue when Johnny comes home.

One exciting update is Jimmy had is 6 month checkup with his glasses. His eyes are doing great, and we picked up a bigger pair of glasses today! We will keep you updated with the new look.

Although Jimmy is not old enough to see his brother in the NICU, he has visited the waiting area. In fact, he now walks the entire way from the parking garage to the Special Care Nursery. Over the past year, Jimmy would visit the NICU to say hello. At each visit, he is always in awe of the large fish tank in the entrance. It is a beautiful tank filled with a variety of fish. It captures his attention and now that Jimmy is into pointing, it was neat to see him pointing to every fish. Jim and I especially like the inscription on the tank with the analogy associated with the Special Care Nursery:

“Our SCN resembles this fish tank. There is a balance of the fish, water, light, darkness, plants, gravel, and filters. When everything works, it is beautiful! The tank is dedicated to all the hardworking staff that allow us to provide the best care for your children.”

We are truly impressed by the care that Jimmy received, as well as the care Johnny is experiencing. Although it was 18 months ago, it still seems like yesterday when we were in the NICU for Jimmy. He has come a long way and we are very grateful for the nurses and doctors that spent five weeks caring for Jimmy. It is a reminder to us what good hands Johnny is in for the next few weeks until Johnny comes home and Jimmy can meet his little brother.