Happy Easter

The weekend kicked off with Jimmy’s participation in the neighborhood Easter Egg hunt with his friends.  It was a wonderful Easter weekend with family. Angie’s family from Ohio and New York came for a visit.  Aunt Elise, Uncle Fran, and Anne met Jimmy and Dunder Dog.  Johnny also had several visits with family over the Easter weekend.

The Easter Bunny even came with some goodies for both Johnny and Jimmy.  The children’s book “Duck and Goose” was the theme, complete with egg shakers (mini maracas in the shape of an egg).  After playing with the egg shakers, Jimmy was a bit confused as we were decorating the dyed eggs — these eggs did not make any music! The decorating of eggs with stickers did not last long.  Jimmy attempted multiple times to eat the stickers.  We quickly moved to the next activity.  Maybe next year we can show pictures of fully decorated eggs!

Dunder was definitely the most enthusiastic about the holiday. His excitement was solely due to an Easter egg hut with Jimmy. Plastic eggs were scattered across the living room. These eggs were filled with Dunder’s favorite – animal crackers. Dunder was very careful not to destroy the eggs and gently pawed at them until they cracked opened.

We look forward to Easter next year with both boys home!

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!