Heart Health: Our Navy Pediatric Cardiologist Dr. Fleenor retired from the Navy and went to work at CHKD. So, our primary cardiologist is now Dr. Carr. He is a really great guy and terrific with the baby. At his last appointment, Henry was so chilled out that Dr. Carr took a lot of pictures with the echocardiogram. He noted that the left pulmonary artery had higher pressure than it did before. Fortunately, Dr. Vance over at CHKD took a look at the results and said we do not need a cardiac catheterization at this time. Good news, but possibility of a cath is another thing on the list of crap I didn’t know could happen with a heart baby.
Pacemaker: Henry’s pacemaker is working well and his heart continues to have a few sinus rhythm beats independent of the pacemaker. This means he is coming out of heart block. We use the telephone to have his pacemaker checked from home. This process only reads a minute of heart rate so they know the pacemaker is working, but not if he is any more out of heart block than in April. We go back to the Electrophysiology group in October and will get a better idea of if the connection between his Atrial and Sinus node has improved.
Eating: Henry started solids at 6 months old. He has had issues with vomiting when crying and when stuffy since he was born. When we started solids we saw this increase. We noticed that in addition to gagging on snot when he cried, he also gagged on thicker or chunkier foods. He started refusing food and ate very little. Meanwhile, he was still having his really short nursing sessions as had been his habit due to the reflux. At his 9 month appointment he slid from 50th %-tile to 3rd %-tile for height and weight. That made it clear that something was wrong. The good thing is his clothes all still fit. We have sleepers from Aunts Margaret, Ellen, and Freda that we use constantly.
Luckily, Dr Fleenor was instrumental in getting Henry a good primary pediatrician. His new PCM, Dr. Buryk is fantastic. She started him on a low dose of Prilosec, wrote a referral to a Pediatric Dietician and to a GI specialist. The dietician recommended supplementing his food and my breast milk with Similac. The food part was no problem, but and getting him to take fortified milk didn’t work. He hated the formula. She also gave us info on feeding solids and told us that the bulk of his calories should be coming from breast milk, not solids. This felt like a step backwards, but we did it.
I went to the Navy pharmacy to get Henry’s new Prilosec. I asked them if they flavored the medication, remembering how hard it was when we tried Zantac as a newborn. The Navy doesn’t flavor their meds. To make matters worse, liquid Prilosec has to be specially mixed by the Pharmacist. When they do this, the product is acidic and has to be neutralized with Sodium Bicarbonate – for you non-chemistry folks, that is baking soda. So Henry’s new medicine tasted like liquid baking soda. They gave us a syringe the size of his mouth administer it. I’m sure you can guess how well that went over, giant tube of salty liquid being shoved in your mouth. YUM. It took both of us to pin the baby down on the floor and force this huge syringe in his mouth to squirt the stuff in. He screamed the whole time. Not a great way to re-educate a kid who is already skeptical about food. I called around to pharmacies to find out who could make it with flavor, but liquid Prilosec is hard to make, so almost no one does it.
GI Specialist: We saw the GI doc a few weeks later. Dr. Kobak had so much information and knowledge, I was really impressed. He was also great with the baby. He said the baby has two different problems. 1. He has reflux. 2. He has a texture aversion causing the gagging and vomiting on certain foods. To fix these problems, Dr. K upped the Prilosec and had me get it at CHKD. Not only did the CHKD pharmacy add grape flavor for free, but they mix it in a higher concentration so we didn’t have to give nearly the volume. I don’t mind a $9 co-pay for that. PLUS, GET THIS, they will DELIVER IT to my house or to a nearby pharmacy FOR FREE!!!!!!!!!!!!!!! Definitely worth $9. Baby H wasn’t a big fan of the grape flavor at first. It took 3 weeks of switching to a skinny syringe, listening to the advice of other heart moms, and giving him Cheerios as a reward (yeah, like a dog), but he now opens his mouth for the meds and doesn’t spit a drop out. Awesome, awesome baby. He rocks.
The other fix Dr. Kobak recommended was to go to Occupational Therapy to resolve the texture aversion. Here’s the embarrassing part. I am a PT, right? I have worked closely with OT’s for my whole professional career. How did I not know you guys did feeding? I mean, I knew you did feeding with stroke survivors – as in get the fork to the mouth and such. But food aversions? Gagging? Barfing? Did not know this. Boy do I feel like a jerk. Anyhow, we got our OT referral and set it up. More on that later. (yes, that’s right. It’s a long email. Deal.)Mobility: I’m sure the last time I wrote, Henry was rolling for mobility. See a toy? Roll there. See Daddy? Roll there. Got yourself stuck in a corner? Scream.
He learned to combat crawl around 6 months, I think. (The baby book is not filled out. Horrible, I know.) Combat (or Army) crawling is what you see in the movies where the dude is in boot camp and has to crawl thru the mud and rain on his belly while someone is yelling at him to “Git your ass moving, soldier!”. That is combat crawling and that is what Henry does. Minus rain, mud, and drill sergeant. I worked with him a little on getting up onto all fours for normal crawling, but I didn’t push the subject since many, many kids never crawl on all fours. It is usually ok to combat crawl and then walk. No big deal.
I started to get concerned that since stability in the shoulder complex is related to swallowing, maybe he needed to crawl on all fours. I asked the OT about it on the first day, and she wasn’t sure. But at our next session she had spoken with some colleagues and thought we definitely needed to work on his crawling.
Well, I gotta say, I really feel like I dropped the ball on this one. Baby H can crawl properly, but chooses not to – or so I thought. He is a genius, you know, so why not think he was making a decision about his mobility? As it turns out, the more I work with him on supporting his upper body on outstretched arms the more I realize he was avoiding it because he is very weak in his shoulder complex. This makes sense since he had his chest sliced open at exactly the time he was learning to push up and gain shoulder stability (duh.) At the time, I thought he was ‘on time’ with tummy-time skills, but it is apparent now that he didn’t gain the strength he needed. Instead, he opted to roll to places and then combat crawl. As I write this, I do think it was because of his genius. He didn’t have time to work on belly activities when he could just roll places and explore his environment. In retrospect, I should have forced him too. I am not sure I could have known it at the time.
In other mobility news, he can pull up on anything and everything. He cruises the furniture. He took 3 steps independently at Grandmas 3 weeks ago, but since then has chickened out. He cruises over to us, grabs our hands, and has us walk laps with him all over the house. It’s either laps or scream. Our choice.
Occupational Therapy: We are currently going to a CHKD outpatient OT clinic. Mandy works on his feeding and crawling. I am using my know-how to strengthen his shoulders in what is called ‘closed chain’ positions. Meaning, his hands are planted on the floor as in crawling. Boy-oh-boy, baby’s sure do have a short attention span. I get about 15 seconds of therapy before he is mad at me for stopping him from doing what he wants.
The good news is that he is now able to eat textures akin to thin rice pudding without barfing. He still gags and barfs when I give him thicker food like oatmeal, or cottage cheese texture, and occasionally gags on a cheerio.
Look who’s Talking: Ok, not really. He does say dadadada appropriately sometimes. He definitely understands ‘no’, ‘come here’, ‘danger’, ‘stop’, ‘good job’ ‘finished’ and a few more. He is vocal pretty much constantly talking or singing to himself or us. Soooo adorable. Oh, and he hollers in the grocery cart at the store causing people to look down the aisle to see what in the world is coming their way.
Sleeping: Does he sleep thru the night yet? Why is this the first question everyone asks? No, he’s not. But we sure are close. We had started sleep training with my college roomie, Dr. Lisa Meltzer , a while back. We decided to suspend training when we got the word on his growth issues. This allowed me to continue to breastfeed throughout the night in order to boost his caloric intake. Now that the cry/barf pattern is alleviated, sleep training is back on. He has actually done really well, with short cries under 10 minutes once he is in his crib. My instinct is to co-sleep and cater to his every need, but the reality is that Western-Born Judy cannot co-exist with Asian-Soul Judy. I was going nuts and getting very depressed. Sleep deprivation is very bad for depressed people. So, baby H is learning to be on his own at night, and learning it well. He still wakes and fusses a little a couple times a night, but settles down on his own for the most part. Now, we are tackling his nap schedule which is also a little off due to the frequent on-demand breast feedings required by a reflux baby. (Lisa’s sister Sharon has been really great too, she is a pediatrician and has a heart baby too!)
Speaking of Breast Feeding: I have to wean. Not my plan. I wanted to breast feed supplementaly for 2 years. Unfortunately, the sleep deprivation threw me into such a dark depression that my doctor added a new medication that doesn’t have as much research on it. I have been going to La Leche League meetings and Cathy, the leader, has been instrumental in helping me find the information on the medication and weaning. Luckily, I was able to breast feed for nearly a year. Even more lucky is that Baby H decided he will take formula in a bottle. Having to stop breast feeding was one of the worst decisions I have had to make. I went back and forth over it. I absolutely love the time the baby and I have together when he is nursing. My heart breaks when he is upset and starts nuzzling for comfort and I cannot give it. I just hate it. But, I think it is best for both of us to have me mentally healthy and reduce the amount of meds in his system.
HUGGS Group: CHKD has a support group for parents of children with congenital Heart Defects. I have never thought of my self as a support group kind of person. But I tell you, meeting these women has been so terrific. I had a bunch over to our community pool for swim time. We are making plans for other meet ups that I look forward to. Having people who understand and have been there is so incredibly helpful.
Our family has been very blessed to have the love and support of good friends and amazing family. Thanks to everyone!