Out of Heart Block and other tidbits

1. Just did Henry the Fifth's telemetry pacemaker check. The very preliminary result is that the pacemaker is just reading his heartbeat and not having to fire. This indicates he is out of heart block. The big official news will happen in June at our in-person electrophysiology appointment in June.

2. *Somebody* keeps farting so potent-ly that I keep checking his diaper for poops, but no poops. What up dude?

3. Henry the Fifth can now climb up and down the stairs. With supervision y'all.

4. Questionable vocabulary? Definitely has Dada down. Maybe Mama, No, Yes, Yeah.

5. Can definitely sign 'Finished.' At first he would grab our hands and make us sign it the way we were teaching him, but this week he started signing it on his own!

6. Decided he is willing to eat Gerber Cheesy Poof thingies, goldfish crackers, pieces of chicken tenders (Tyson white meat strips, YUM!), french fries, & tots. Yay, our kid likes junk food.

7. Incidentally/ accidentally discovered he is not allergic to peanuts. We did this by discovering that he loves the fries from 5 Guys. The next day it occurred to me that 5 Guys cooks in peanut oil. Oops. The GI doc said not to give him any more peanut stuff as early introduction can actually cause an allergy. And, he said that if the parent(s) have ANY allergy at all (such as my allergy to penicillin) he shouldn't have peanuts until age three. Sorry dude, you just have to wait for the awesomeness of the peanut butter/chocolate combo.

8. I will eventually post on the holidays - Turkey, Christmas, New Year. Here's a preview... I only gained 5 pounds. :) Hubby said to look at it in a positive light. It could be worse. Oprah gained 40.

12 days of Giveaways on Mamanista

Quite a while back I found the blog of a woman whose daughter also had Tetralogy of Fallot. http://mamasaga.blogspot.com/ I have been reading her blog ever since. She happens to also be a writer for Mamanista, a mommy shopping blog that has lots of good ideas and reviews.
They recently published their Best Holiday Toys guide where they are also hosting giveaways of some great toys and gifts! http://www.mamanista.com/best-toys

18 pounds 1.1 ounces

I have been all psyched because Henry the Fifth has been gaining weight. I even put away all of his 6-9 clothes and pulled out his 12month outfits. They are huge on him. his 9 month and 9-12s fit the best. I was so tired of the 6-9s even though we could still squeeze him into them. They got a lot of use since he didn't grow for so long. Now, he gets to wear baggy clothes until he grows a little more.
We had a follow up at the pediatrician yesterday and I had all sorts of questions about when to stop supplementing and how big is too big. Well, that was all moot. Even though he is gaining weight like a champ, he is still in the 3rd percentile for height and weight. He is gaining 12 grams per day, which is better than the average of 8-10 grams that most kids his age gain. But all that is doing is keeping him on the 3rd percentile curve. He isn't regaining what he missed in those few months. The doctor is thrilled with his weight gain. She said we shouldn't expect him to catch up much (or at all) until he is a lot older.

I am just worried about him being scrawny and geting bullied when he is older. He seems to be a social butterfly right now., so hopefully that trait will help him out.

crayon-stache

crayon-stache
Originally uploaded by roenke47

I know you are thinking "Why did she give crayons to an 11 month old?" Well, when the OT asked if he could make marks on paper with a crayon, I did my suck-in noise of shock and said, "We don't let him have crayons."
Well, oops. Apparently, he is ready for them.

Or so we thought.

11 Months Old

Yesterday was Baby Henry's 11 months birthday. We had an Occupational and Speech Therapy evaluation on the 28th to see if Henry qualified for the sate program. They found that he is at 14 months for his problem solving, on time for mobility and gross motor function and on the verge of falling behind for fine motor skills. This is because he is weak in his chest and shoulder girdle as a result of open heart surgery. He is not 25% delayed, so he didn't qualify, but we are already on OT for feeding with CHKD.
The therapists who came for the state eval were great and gave lots of ideas to keep Henry on time or ahead of the curve. recommended some toys he needs. So, naturally, I had to go shopping.
I got him Toddler crayons to be used with a parent (because they went straight into his mouth., blocks, and a shape sorter cube. We have other stuff on his wishlist.
I was going to buy a ball to use for shoulder rehab (like adults use an exercise ball), but I realized today I can just use my water polo ball. Early exposure to the sport is important.

One more month to go until his big birthday!

Golden Pig Update

This is the email I sent to family and freinds with an update on Baby H...

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 50^th %-tile to 3^rd %-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!

I Feel Pretty

Henry has been eating so well lately. Usually between 4-8 ounces of food at each meal!! He loves his beets. It is so funny because we mix his food with Simila for a calorie boost, so the beets look like Old Lady lipstick.
I grabbed the camera to get a shot of his lips.




Then he gagged on a cheerio and .... BLEP!....up came lunch. Bummer.



But at least he got to finger paint.

Mandy said he can have biter biscuits!

He is making progress with his feeding therapy. His OT said he can have biter biscuits. Yay!!

Er. Well, yuck.... What a mess.....!

Upper GI test

Baby Henry had an Upper GI test on Friday. He had to be NPO (nothing by mouth) from 2am that morning. Then he was strapped into the X-ray machine. While in the machine I fed him a bottle of Barium. He was so hungry from not eating that he drank the Barium down. The X-ray takes a video of the barium as it traveled down to his tummy and into his upper intestine.
No immediate problems were found. We will get final results later.












The X-ray showed Henry's pacemaker which is right over his stomach. The big white blob next to it is his stomach full of barium.

He had barium all over his face afterward.

Daddy soothes baby Henry while he is strapped to
the X-ray machine.

Feeding

Baby Henry is having trouble with his eating. Anecdotally, feeding and reflux / GERD problems are common in kids with heart surgeries. Depending on the cardiologist you talk to they may agree or disagree with this, but our GI specialist definitely finds this to be true. Baby Henry did not grow well from 6 to 9 months due to decreased appetite and gagging and vomiting at meals and even with breastfeeding. Fortunately his PCM Dr. Buryk got him started on Prilosec which the Dr. Kobak our GI specialist increased. The Prilosec has made a big difference in the throwing up when he is upset and has helped his other GERD symptoms. Unfortunately the gagging on certain food textures will take some intensive OT to overcome. The worry is that he will develop a full-on oral aversion.


Right now the kid is definitely NOT oral-averse. Everything goes in his mouth. He just refuses most food from a spoon and eats tiny tiny meals. He does love his Cheerios, so he gets those after each meal in hopes that the self feeding will continue to be enjoyable for him.

I made a hand bound feeding journal to follow his eating and nursing patterns.


It will be another week until we know if the Prilosec is really working to its full potential. OT starts the second week in August. I can't wait to meet our OT!!

In the meantime I will be thankful that we will get a little more use out of his 6-9 month clothes. (but I already shopped the TEA sale for 12-18's in prep for when he gains weight this fall!)

Tetralogy of Fallot Surgery

Pre-op
I made his special Valentine's Day Open Heart Surgery quilt. I made a felt appliqué of the baby heart character from his pre-op book.
Post-op
Pain
Sweetness

Baby Henry the Fifth was born with a heart defect called Tetralogy of Fallot. The defect was found on his second day of life when Dr. Robertson heard a murmur. When we left the hospital after he was born we went directly to the pediatric cardiology specialist 2 hours away near Tacoma for a test. Dr. Puntel, at Madegan Army hospital, told us the news. Baby Henry would need open heart surgery to repair the defect. The Tetralogy includes a Ventrical Septal Defect, a shifted aorta, pulmonary valve stenosis, and hypertrophy of the right ventricle. Babies with Tetralogy of Fallot generally turn blue when upset or sick. Fortunately Henry was what they called a Pink Tet.

In December after Henry was born, the Navy moved us to Norfolk VA. The surgery was scheduled at the civilian hospital Children's Hospital of the Kings Daughters. Our surgeon was Dr. Gilbert and Brandie was our specialist nurse. He had surgery on Valentine's Day 2008 - a perfect day to repair a broken heart.

After surgery, Henry developed an arrhythmia called Heart Block. This extended our stay for 10 days while they waited for the heart block to resolve. It didn't. So, on February 26, baby Henry had a pacemaker placed. It is just below his sternum since he is too small to have it in his chest. The pacemaker does just that- it paces the heart. It is not a defibrillator. That means that the pacemaker detects Henry's own heart beat. If the heart skips a beat or doesn't beat in time, the pacemaker fires and causes a single beat. Henry's heart is not any any more risk of stopping than a normal heart. (A defibrillator is for folks whose hearts might stop and need a kick start.)

Grandpa
Grandma
MommyHenry 4 and Henry 5.

The good news, is that on our recent check up they discovered that the heart block has started to resolve, meaning that his heart is beating normally some of the time and the pacer doesn't need to fire. This is an unusual development and leaves us very hopeful. He may continue to get better and not need the pacemaker or things may stay the same. We are happy either way.

This whole process has been amazing. We are so grateful to have had an incredible surgeon and amazing staff at the hospital. I am blown away at what was able to be be done to make my baby healthy and happy.

Catching Up

So, it is time to catch up on the blog. Seeing as how I've had a baby and all. 8 months ago. My
plan is to back log the past 8 months. Here is the overview:

My water broke while I was in the shower getting ready for bed. Stupid me, thought I was incontinent. I figured I would mention the incontinence to the doc at my appointment the next day.

At my appointment I told Dr. Robertson that I was having some incontinence. He said, "Oh Shit." And proceeded to check to see if my water broke. Sure enough, it did and I was directly admitted.

47 hours after my water broke, no pain meds, pitocin that didn't do the trick, and finally a C-section, little Henry arrived into the world at almost midnight on September 29, 2007. A week early.

On Henry the Fifth's second day of life, Dr. Robertson listened to his heart and heard a murmur. He called a specialist at Madegan Army Hospital and got us an appointment. The next day we were discharged from Bremerton directly to our appointment 2 hours away. We had to drive our teeny little boy to the specialist. Waiting for the doc was my first breast feed in public experience. Dr. Patel was awesome. He did an echocardiogram and found that our precious baby Henry had a heart defect called Tetralogy of Fallot. He would need open heart surgery.
Fortunately, Henry had what they call Pink Tet. He did not turn blue when upset, so his surgery could wait until he was bigger.






Here is Henry the Fifth at 6 weeks old doing his pirate face. AAARRRRGH! I'm a Pirate!




















Halloween. Can you find the baby?




On a ferry to Seattle with Daddy.



















Despite the baby's diagnosis, the Navy's plan to move us didn't change. Baby Henry was allowed to fly without any worry of medical problems, but I was still really worried. Luckily, my mom decided to fly out to Seattle and fly back with the baby and I. Having a helping hand with all our stuff was terrific.

















Once in the Norfolk area, we met our new cardiologists Dr. Carr and Dr. Fleenor and were set up with our civilian surgeon, Dr. Gilbert at CHKD.

Surgery would be in February.

So we had our first Christmas and New Years before surgery.

Henry is our little angel. I will post about the surgery later and catch the blog up to now.