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Health and Medical Update
At the beginning of September, Joey had some scheduled checkups for both cardiology and electrophysiology at CHLA. It had been three months since our last checkup with our cardiologist and he hadn't seen the pacemaker doctor since being released from the hospital, so we were anxious for the updates and to learn about his progress. We were also nervous about how he would behave during his various appointments. We arrived for our cardiology clinic at about 10:30am, we only waited for a few minutes before being called back for his time with the nurse. They took his weight, height, and checked his blood pressure and pulse ox. His pulse ox varied from 96%-99%, which they weren't concerned with. He measured in at the same height as he did at his pediatrician appointment last month, so one of the measurements must have been slightly off, and he is gaining weight steadily.
We went back to the waiting room and waited to be called for his echocardiogram. We had a technician that we never had before, but he was very nice and patient. I warned him that the last time Joey had an echo he was still in the sleepy baby stages and we weren't quite sure how the scan would go today. We had a bottle and some toys ready, Elmo was playing on the TV in the room, and we swaddled up his legs. His legs are only ever still when he is sleeping these days so I rested my hand over his legs to try to minimize the kicking. Everything started out really well. He was a little squirmy throughout and always wanted to grab the technician's hand or the wand, which we all laughed at. He started to get a little bit fussy and because the tech was checking a very high point under his chin at that time, we couldn't give him the bottle to calm him down, so Daddy did his very best distraction noises and toy squeaks, and it worked! Joey remained squirmy, but he was able to get all of the images he needed after about 30 minutes, which was perfect timing, because Joey was definitely over it by then!
We moved back out to the waiting room again after the echo and then got called back to see Dr. Kung. As we were waiting in the exam room, the pacemaker nurse, Stacey, came in and had a few minutes to do her check up. They put a few leads on him and the pacemaker monitor over his belly and ran their tests. They look at the rhythm, check the battery life, and run through some different levels to find out what his heart is doing naturally without the pacemaker. I can only imagine that it would feel funny or weird to Joey as they are changing his heart rhythm around artificially, so he started to get pretty fussy. Jamie stood up and held him on his shoulder and once he got a glimpse of the TV in the room, he calmed down completely and could not take his eyes off of it. At that point Dr. Kung had joined us in the room and we all laughed at how glued he was to the TV.
At the end of the tests we learned that Joey's pacemaker battery life range is 3.25-5.5 years. It is such a large range because it depends on how much the pacemaker is actually working. Because Joey's heart is being paced 100% of the time, it may end up being closer to the 3.25 year range. But whenever it happens, they will assess whether or not the leads to the heart are still good and if they are then it will be a tiny little incision just to replace the battery and they will leave the pacemaker where it is. If the leads look like they need to be replaced they may think about moving his pacemaker up to his chest, depending on how big he is at that point. But luckily, we won't have to worry about that for a few years.
The way Joey's heart and pacemaker work is that his upper chambers beat on their own, but there is no communication to the lower chambers, so the pacemaker analyzes what the top is doing and makes the bottom match. One of the tests that they do during these checkups is to back the pacer off almost completely to find what his escape rate is. This is how fast the lower chamber beats naturally, because even in complete heart block, there is still the escape rhythm present, but it is usually very low. Joey's escape rate was 50bpm, which is very low, but in the normal range for complete heart block. A heart healthy baby his age can have a resting heart beat of 120-150bpm. This all means that if his pacemaker were to malfunction his heart would continue to beat at about 50bpm and it would be very noticeable to us that something was wrong. He would have physical signs of extreme fatigue, fainting, etc. and when he got older he would be able to notice and communicate that he felt sick or "off". During this test to find the escape rate Joey definitely was agitated and fussy, but they test so quickly that he doesn't feel any significant stress.
Although we hoped that his heart would become less dependent on a pacer, we are glad to know that the pacemaker is doing exactly what it needs to be doing to keep Joey healthy.
At the end of the tests the electrophysiologist, Dr. Hill, came in to check in and she was happy to see that everything looked great. And after a quick examination from his cardiologist, Dr. Kung, she explained that everything is looking great with his heart. The small leaks that he has between the atria were getting smaller, and although he was squirmy she said that the views she got of arteries showed little to no narrowing than what was present post-op. Both Dr. Kung and Dr. Hill cleared him for six months! Our next appointment is on the books for one week before his first birthday! That is crazy to think...
Firsts and Milestones
Although Joey has known how to roll since his last update, he has recently learned that rolling can get him from one place to another and is a great mode of transportation. He rolls to get his toys and over to the couch or the side of his crib so that he can kick something and make noises. He pushes his upper body up really high with his arms and tries to get his butt up in the air to crawl, but can't quite put the two motions together to get up on his hands and knees quite yet.
We are currently working with Joey on sitting and staying up without being assisted. He still isn't quite strong enough to do it but we practice every day sitting him on the floor with his hands on the ground as a support. It is rather funny to watch him slooowly fall head first into his own lap and then over to one side. Even in his high chair he always ends up leaned over and slouched to one side. :)
And speaking of high chair.... Joey got to eat his first foods this month! We started with pea puree and he loved it. The second food we made for him was sweet potatoes, and although that is what I craved during my whole pregnancy, I think he likes the peas more. Next up on the list will be avocado, banana, pears, apples, and squash.
He is a little more gassy than usual because of the addition of fruits and veggies, but all in all he is taking to the baby food pretty well! Most of the time he tries to eat his fingers along with the food off of the spoon, so bath time usually follows his night time feedings! (Or Scruffy licks his face and hands nice and clean!)
Likes and Dislikes
This month we discovered Badanamu on YouTube. So we are giving Pink Fong's Baby Shark and Little Baby Bum a break and watching Badanamu nonstop now! The animations and songs are so cute and Joey loves watching them!
Joey's grip has improved a lot lately so he is now able to hold onto his toys better and he loves putting them in his mouth. Not to mention he also loves to grab (and never let go of) hair, necklaces, earrings fingers and sometimes just neck meat! Now I know why so many moms get the "mom cut"; it's so that their children don't pull out all of the hair on their head.
Nakey time, peek-a-boo, and checking out the baby in the mirror are three of Joey's other favorite activities!
Nakey time, peek-a-boo, and checking out the baby in the mirror are three of Joey's other favorite activities!
Grandma got Joey a big picnic blanket that we put on the floor that he rolls all over and we recently put the "big boy seat" on the stroller so that when we go on walks he doesn't have to be in his carseat anymore. He loves looking around, chewing on the straps, reclining, putting his feet up on the footrest and he loves all of the attention he gets from everyone that can see him. He even got a quarter for his piggy bank from a very sweet WWII veteran at the street fair!
On most days he still dislikes going down for naps. If only kids knew how much they would miss naps when they got older... I would gladly take Joey's naps for him if I could!
Family Update
As a lot of you know, Jamie has two days off each week and on those days Joey loves going out with his Dad and Grandpa to lunch. He gets to walk around with his dad in his big boy stroller seat, catch Pokemon and get some fresh air. Sometimes he also gets too take his puppy for a walk too.
On the days that both Jamie and I are at work, Grandma and Grandpa come over to watch Joey. But last month Grandma had a job in Pittsburg for an entire week, which meant that Grandpa Dan was all by himself! All of Grandpa's training paid off and both Grandpa and Joey escaped the week unharmed! In fact, he did so well, that he is going to do it again next week while Grandma is in Boston. The only thing that will be new will be that Grandpa will now have to feed Joey in the early afternoon. And for anyone that knows my dad, you know that anything involving food not on a plate or in someone's mouth grosses him out! He still can't watch the "little piggy" mashed potato scene with Randy in A Christmas Story, so hopefully Joey will really like the food that we give him next week so there won't be too much gagging, from Grandpa. Maybe we will try banana so that Grandpa doesn't have to deal with anything green or orange all over Joey's face and hands!
Phew! At the start I thought this would be a quick update... Oh well! Happy Half Birthday to our sweet baby boy!
