Truncus Arteriosus

quarterly cardiology appointment

2011-12-12T20:48:00.000-06:00

Yup, we have reverted. At today's visit Oliver's numbers weren't so great. Instead of dropping Oliver's final med, our doctor decided to increase the dose. Instead of waiting six months, we will be going back again in three. Instead of an echocardiogram, at his his next visit Oliver will have an MRI to get a more detailed look at what is going on inside of his chest.

From the echo today, it looks like Oliver's conduit will need replacing sooner rather than later. His truncal (aortic) valve still looks serviceable, but his conduit is narrowing both above and below the pulmonary valve and his left pulmonary artery looks small.

I knew there was something wrong when Oliver's echo lasted an hour.

On the upside, he isn't blue, doesn't struggle to breath and doesn't lack energy...yet.

FDA trials

2011-09-01T17:02:00.000-05:00

It has happened--what I was waiting for. This month, the federal government gave scientists approval to begin testing home-grown heart parts in the U.S. Two scientists at Yale University have created blood vessels using patients' own cells. They started implanting these vessels in patients 10 years ago in Japan. Now, the FDA has given approval for them to start placing these blood vessels in pediatric patients in the U.S. This is just thrilling. This is the one breakthrough that I have wished for for Oliver. If he could get a living vessel grafted onto his heart the next time he goes in for surgery, there is the chance that he would never need another surgery---because the living vessel would grow with him.

semi-annual cardiology appointment

2011-06-07T11:28:00.002-05:00

Yesterday, we went in to see the Dr. Wilson. Here's the run down:

Weight: 27 # (20%ile)
Height: 87.8 cm (20ish %ile)
Head circumference: 49.5 cm
BP: 99/52
Heart Rate: 97

Status of all parts (both homegrown and replacement): no change from the last two echocardiograms (the best we could hope for).

What was different:

*Oliver did not have his oxygen saturations measured
*Oliver was hooked up to leads during his echocardiogram so that they could record a trace of the electrical activity of his heart at the same time they assessed the blood flow and structural integrity of his heart. This was just because he is getting bigger and they felt he would not mind them/pull them off.
*Oliver's cardiologist noticed that Oliver is starting to outgrow the dosage of his one last drug...and he's going to let him keep outgrowing it. Oliver may be off all meds by his birthday. The doctor wants to make sure there aren't any bad things that go wrong in the next six months. This one last medicine (enalapril) is an afterload reducer. From what I understand, it reduces the blood pressure in Oliver's blood vessels so his heart does not have to work so hard to push the blood through these vessels and out to his body.
*The doctor said that Oliver should get antibiotics before he goes in to the dentist, just as a precaution.
*The doctor said that Oliver has passed through one stage of rapid growth (infancy) without any surgical interventions and now has entered a stage of steady growth. The biggest strain on the heart comes during periods of rapid growth (infancy & adolescence). So, the doctor said Oliver's heart parts show every sign of carrying him through until his next stage of rapid growth... Which is a whole lot longer than I ever dreamed. Of course, there is always the caveat that his one homegrown valve could suddenly start misbehaving or something else could go wrong. But, I say, why invite trouble?

Questions from a comment:

2011-06-04T13:13:00.001-05:00

A reader posted these questions as a comment on an earlier post. I'll answer from my experience, but if anyone else has more to add or something different to add, please do.

Questions:
1. What is the possible earliest time when you can find out your baby is having TA?
2. What is the survival rate for people with TA ? I mean what is the average life span?
3. If I had a baby with TA, what are the chances for TA to repeat in my future pregnancies? Provided me and my partner are genetically doing good (we've got genetic test done). Is there any such rule that defines the possibilities of TA in a couple, or it just so random to predict whoz next ?

What I have learned/experienced/heard:
1. My son was diagnosed at 20 weeks gestation. I don't know if it can be diagnosed earlier.
2. Survival rate: If you look at the header of my blog, 80% of babies who get operated on, survive their operation. Average life span: I'm not sure. Since the first surgical correction of TA was done in 1968 (I may have the dates wrong), we wouldn't have any people who were older than 43 right now...I"m aware of a 22-year-old--and there are others you can find on the yahoo group listed on the left side of my blog. In fact, that might be a good place to re-post your questions.
3. If you have had one child with a congenital heart defect, it increases the odds that you will have another one--not by a huge amount--but some. I'm not sure of the numbers. I know of several people who have more than one child with a CHD--even though they got a clean genetic bill of health. See: "you'd never guess" and "last roommate" in the blog list to the left.

Calvin's tulips

2011-03-28T11:50:00.000-05:00

The tulips we planted in Calvin's honor quite some time back are finally pushing through the dirt. They didn't do so well last year-- I think it was either the rabbits or a lack of water or sun. So, this year, I have pushed the big barrel out from under our overhang. At least I can control their access to sunlight and water, if not the appetites of the bunnies.

Oliver's doctors

2011-03-25T19:16:00.000-05:00

Today, Oliver graduated from another medical service. For the past two years, we have been making semi-annual pilgrimages back to Milwaukee to see their developmental team. We had another appointment scheduled for Monday. However, our insurance denied coverage for the appointment. When we called the Herma Heart Center, they confirmed that as Oliver was doing so well as of his last check at their developmental clinic, there is really no reason for him to continue to receive evaluations. Now, we are down to:

1) a pediatrician
2) a cardiologist
3) a surgical team

Oliver sees the pediatrician with the same frequency as any other kid. He sees his cardiologist every six months. Hopefully, he won't see his surgical team again for many years.

what went wrong

2011-03-18T14:12:00.000-05:00

This semester I am teaching Zoology at a local college. Next week we will start our unit on development. Consequently, for the past few weeks, I have been updating my understanding of how animals (including humans) develop.

On page 389 of Scott Gilbert's Developmental Biology textbook, there is a picture of what went wrong with Oliver's heart. I can't stop looking at it. You see, during development, human hearts go through a stage where there is only one outflow vessel from the heart: the truncus arteriosus. This is a normal stage of development.

In normal development, that common vessel will eventually divide in half and give rise to the aorta and the pulmonary trunk. In Oliver, and in other children with Truncus Arteriosus, that common trunk, or truncus arteriosus, does not divide in half. For some reason, the cells that usually separate that common trunk into two vessels do not migrate into their proper place and divide the single tube in two--and so, the developing embryo is left with a single outflow vessel: the persistent truncus arteriosus.

This process is similar in many other animals, and has been studied in chickens. In the enlarged image, you can see the cardiac nerual crest cells migrating to the conotruncus, a.k.a. truncus arteriosus, of a chick embryo where they will form an internal dividing wall to create the separate aorta and pulmonary trunk. For some reason, this did not happen in Oliver. And it sucks.

the good life

2011-02-06T20:28:00.000-06:00

Happy Birthday, Oliver!!

2011-01-01T23:05:00.000-06:00

the aftermath...

2010-12-16T09:53:00.000-06:00

Yesterday, Oliver got a haircut. All it took was: clippers, scissors, a comb, a sink full of water, a tooth brush, linking rings, and a pair of his sister's socks. Photo of haircut to come.....

semi-annual cardiology appointment

2010-12-06T14:15:00.000-06:00

Oliver went in to see his cardiologist today and everything looks good. Oliver was full and tired when we arrived for our 11 am echo, so he lay quietly watching the video and playing with my ipod for the full 45 minute scan. This visit he also got an EKG.

And now for the numbers:
weight: 24#10oz
height 33.3 inches
head circumference 19.2 inches
blood pressure 102/53

His EKG looked abnormal, but only in the way it should look abnormal for the sort of surgery he had when he was first born.

His echo showed that:
His truncal (homegrown) valve looks good, if a little thick.
His pulmonary (donor) valve and conduit have only mild narrowing and thickening, trivial backflow and a borderline (mild/moderate) pressure gradient.

The doctor said that all of this taken together means that Oliver will probably be school aged before he needs any further work done. He probably won't make it to his teens without replacing his homograft but he should make it 4-5 years. The question at that time will be whether he needs both valves replaced or just a pulmonary replacement.

This is different than what he said at the last appointment (surgery possibly as early as this summer) because the echo tech got a better echo reading this visit. Oliver was much more wiggly in June than he was this time, which made thing look like they were getting worse faster than they are.

We are relieved.

Now, Oliver is napping in his new vroom-vroom.

eating epiphany

2010-12-01T19:47:00.000-06:00

Last week, my friend who works in a GI clinic stopped by. She said she had to tell me something. She said she had a revelation for me.

"O.K.," I said.

And then she proceeded to explain WHY heart babies don't eat well. She explained (as it had been explained to her by the gastroenterologist she works with) that during heart surgery, the vagus nerve can be affected. The vagus nerve influences a lot of the things that go on in our chest and gut-- things we don't even think about, like the rate at which our heart beats and digesting food.

Anyway, among its many influences, the vagus nerve controls stomach emptying. In some babies who have had heart surgery, the vagus nerve is damaged and the stomach does NOT empty as often as it otherwise would. Because the stomach has not emptied, the baby feels full. Because the baby feels full, the baby does not eat.

It made sense to me. It gave me a sense of relief. I can accept things I can understand. I no longer worry at them, trying to figure them out.

bottles, part III

2010-11-25T21:59:00.000-06:00

We just got rid of Oliver's nap bottle. It happened yesterday, or rather, I accepted that it had already happened yesterday. Oliver frequently falls asleep without his nap bottle when I push our morning errand run longer than I should. So, on Wednesday, when Oliver ate a huge mid-morning snack (1/2 cup applesauce, 1 Yo Toddler yogurt, 1/2 cup rice and beans, 1 peppermint Joe Joe, and water) I decided to see how he did without the bottle. He did fine, of course. He just snuggled down with puppy, Fi-fi (his long neck, a.k.a. giraffe) and his blankies and drifted away. He also ate a much bigger afternoon snack than usual.

This sort of eating, I understand. This is what my daughter did, too: nibble in the morning, huge mid-morning snack, nibble after nap, huge mid-afternoon snack, nibble at dinner, big before bed snack. Although, I think we can push his mid-afternoon snack back a little bit and turn dinner into a "big" meal.

The last few days I've been feeling especially grateful that we made it home without a feeding tube--and that Oliver has grown. He has his next cardiology appointment in a few weeks and I'm curious to see how much weight he's gained and how tall he's gotten... (not so excited to hear about the other stuff, but, you know).

This close:

2010-11-22T14:18:00.000-06:00

A few days ago, our whole family was supposed to fly cross country to visit relatives for Thanksgiving. Then, the day before we were supposed to leave, Oliver's nose started dripping like a faucet. He took a 30 minute nap because as soon as he lay down flat, he started coughing, woke himself up, and started crying.
"Just give him some Benadryl," suggested a friend.
"There are no decongestants on the market that are safe for children that age," said the pharmacist.
"Decongestants can alter a person's heart rate and blood pressure, so you wouldn't want to give them to him anyway," said the pharmacist.

That night, Oliver went to sleep at 7, woke up at 8, woke up at 9, woke up at 10:45, woke up at 2, woke up at 2:15, woke up at 2:45.

The next morning, after learning that one of the cousins we were going to visit was puking, we canceled our travel plans.

We were this close to going. This close:

Oh, well. Now we can catch up on all of those projects that we keep putting off. And, at my husband's request, we will be getting Thai takeout for Thanksgiving.

language...

2010-11-16T16:35:00.001-06:00

...is now a way of life for Oliver. He narrates his life and uses words to control his environment.
"Mama tent," he demanded today.
"In tent."
"Laugh dog in tent" (we have a toy dog that laughs)
"Poot in tent" (computer)
"dog out"
and then suddenly, "cows."
I was baffled, until I saw Evelyn's old cow jumper.
"Do you want to wear the cows?" I asked.
"Cows on."
And so he spent the next few hours prancing around in a very cute cow dress.
"Do you want the cows off?" I asked several times.
"No-no-no," head shake, "cows on."
Until finally, he decided, "Cows off."
and that, my friends, was that.

...
He's also started saying "thank you," and "cues me," But he only says "cuse me" when he "toots".

Today, I spent some time in my office. He rattled the nob a few times then lay down on the floor outside of the door and began calling under the crack, "Love Mama. Love Mama." How could I resist?

stories

2010-11-10T18:25:00.000-06:00

This week, Oliver has started telling me stories. Here is one....and my interpretation:

"La-la bump. Hands wall."

Oliver told this story over and over again a few days ago. Earlier in the day, my freind and her one-year-old daughter had come over to visit. While they were visiting, Olivia began coloring on our chalkboard. Oliver walked over, positioned himself next to her and gave her a big "bump" with his behind, causing her to fall on the floor--more stunned than anything else. Oliver knows he is not supposed to bump kids, so I said, "Oliver, no bumping people. Go put your hands on the wall." He stood in time out with his hands on the kitchen wall for the next 90 seconds.

Later that evening, he started telling me the story of his day. It took a few repetitions for me to figure out what he was talking about since I'm not used to him describing things that happened earlier in the day. Then, we started having a little dialogue:
"La la, bump" he said.
"Did you bump Olivia?" I asked
"huh," he agreed.
"And then what happened?" I asked
"Faww down."
"Did she fall down?" I asked.
"huh"
"Oh no! What happened next?" I asked.
"Hands wall," he said.
"You had a timeout? You had to put your hands on the wall?"
"huh." again.
and then, "La la, bump," again.

We probably repeated that little dialogue 15 or 20 times before he got distracted by one of his diggers.

vehemence

2010-10-20T13:16:00.002-05:00

Today, I was chatting with three other women, one of whom is expecting her first child, when the second woman, mother to four children, stated the oft repeated adage: "Oh, don't worry if your child has special needs. You will just love them more for it."

"No," I said. "I do not love Oliver more because of his special needs."

"I love him the same as his sister...but I resent him more."

When the mother of four challenged me on this, saying, "Oh, you just mean you resent his problems," I let her have it again.

Oliver's problems are not something separate from him. There is no Oliver over here and Oliver's heart defect over there. It is all wrapped up in one (admittedly adorable) package--and I do resent him sometimes. I resent the time I lost with my daughter in order to care for my son. I resent the massive resources devoted to healing this one baby. I resent that I couldn't take care of him for the first months of his life. I resent the constant fear that he will die during his next surgery.

Yes, I love him. Of course I do. I love him and I want him and I am glad he is my son. But, there is resentment and anger, too, and he is in the cross hairs.

Once my friend realized what I was saying, she was horrified. "You would never want him to know that," she challenged. Of course, I wouldn't. I also would never have wanted him to be born with a broken heart. But the world is a broken place and Oliver is a smart boy: he will figure it out someday. I just pray that he knows how much everyone in his family loves him when he figures out how much I have struggled with this.

I hope the expectant, first time mom was not too disturbed by my vehemence.

bottles, part II

2010-10-19T13:14:00.000-05:00

Someone asked me how I planned to take away Oliver's bottles. This is something I've thought a lot about. First some background: Most of the literature I've read recommends phasing out bottles by the time a baby is 18 months old--entirely phasing them out. The little flyers we get from the doctor's office when I take my kids in for well child checks are adamant on this point. No baby should get any bottle after 18 months. period. But, these little flyers do not mention nursing. I have never read anywhere that babies should stop nursing by a certain age and I know many women who nurse their babies until they are much older than 18 months.

Now, my thoughts: 1) Neither of my kids were able to nurse. Holding my babies while they are drinking their bottles is the closest we get to nursing time--and I want to keep that time as long as I can. 2) My son is not typical. While I try to pretend he is, well, it just isn't true. He didn't get his ng tube yanked and start feeding himself until he was nearly 2 months old. He wasn't interested in solid foods until just recently. I get it: we're going to make these transitions slower than a typical kid. 3) My son is skinny. If I can pump in a few extra calories from a bottle while we snuggle, I'll give him the bottle. I want to fatten him up for his next open heart surgery: make sure he has something in reserve.

We don't always give Oliver both bottles. Some days he falls asleep before his nap-time bottle. Some days he demands his naptime bottle mid-morning. Some days, we give them to him, but he doesn't finish them. I think our plan is to offer him real food whenever we sit down to eat and whenever he acts hungry. We should probably offer him milk in a cup then, as well--we're not so good about that. After he eats some food, we'll offer him the bottle--until it becomes clear that he is not interested.

I think that's how we did it with my daughter. We might have substituted a sippy cup of milk for the nighttime bottle towards the end of things. She's now 5 and not interested in bottles at all.

I will say, I am glad Oliver came home from the hospital sleeping through the night. He has gone down at 6-8 just about every night and slept until 6-8 in the morning, so we don't have to deal with breaking a night time bottle. I remember that took a lot of will power on my part and a lot of tears on my daughter's part....but the adults in the house needed the sleep, so my husband and I put in several long nights tense in our bed while she screamed herself back to sleep--wanting her bottle.

two bottles a day

2010-10-14T21:42:00.000-05:00

Yup, at nearly age two, Oliver still takes a bottle--two of them to be precise, one before nap time and one before bed. I can hardly believe my reluctant eater a) gets the vast majority of his calories from real food and b) wants the two bottles he gets.

I can remember waiting for him to fall asleep, so I could slip a bottle into his mouth when he was younger--he was so uninterested in eating that he would only do it while unconscious.

I feel grateful that he never needed a G-tube. I feel even more grateful that he finally wants to eat normal stuff.

Tonight he was very interested in our tuna melts and juice (aah-juh). He ate nearly a full bowl of oatmeal and half of a scrambled egg for breakfast and chowed down on lentil stew for lunch. Then there were the snacks: chili-lime mixed nuts (spicy!!!), yogurt, a cookie, pepper jack cheese, sesame crackers, and dried blueberries.

I think I might just go and cry with relief.

inversion

2010-10-14T21:23:00.000-05:00

Tonight, while giggling with Oliver, my world turned momentarily inside out. Oliver was running back and forth from his dad to me, asking to be tickled, snuggling on our laps, screeching with laughter, when an image of his chest open flashed through my mind. I kept giggling and tickling and Oliver kept running and snuggling--while my cheeks started to tingle and my shoulder blades pulled back tight.

problem solved

2010-10-06T08:38:00.000-05:00

Oliver loves ah-nuhs (knobs). Problem: our deadbolt (the one he calls a football) is too high for him to reach. Solution: laundry basket.

Oliver loves...

2010-10-02T14:10:00.005-05:00

...hot dogs. He ate 1.5 last night. We rarely eat them, so he was first introduced to them at some fourth of July functions we attended--and he fell in love. For the last few days, as he's played in his sand box (which he also loves--particularly filling a bowl with sand and then dumping it down his front), he's periodically come over to me, pointed at the BBQ and said, "hot dog." So yesterday, we bought hot dogs, chips and root beer and invited Oliver's Aunt Mary over for dinner.

...and a good time was had by all.

Oliver's medical appointments

2010-10-02T13:55:00.003-05:00

Ashlea just asked me when Oliver's next appointment is. Well....it depends on what kind of appointment you mean. For general consumption:

Oliver sees doctors in Madison (close to home) and Milwaukee (1.5 hours away).

Oliver's pediatrician is in Madison... We see her every 6 months (just like any other kid). I think we'll go in next for Oliver's 2-year-old check-up in December.
Oliver's cardiologist is in Madison... Right now, we see him (I love him, by the way) every 6 months. Oliver gets his echocardiograms in the clinic in Madison, as well--unsedated--which requires a lot of skill and a lot of patience on the part of the echo-techs. Our next appointment there will also be in December, on the 6th.
Oliver's developmental team (occupational, physical, and speech therapists as well as a pedicatrician who specializes in kids who had a rough start in life) is in Milwaukee... We see them every six months. These visits are non-stressful from a medical standpoint....there is no life-or-death-or-open-heart-surgery about them. They're more like well-baby checks. We won't go back until March 28 of next year.
Oliver's surgeon and the rest of the surgical team is in Milwaukee. We don't know when we will see them next. Our cardiologist is betting we have till summer 2011. Even then, we don't know whether Oliver be able to buy time with a heart catheterization or whether he'll need full-blown open-heart surgery.

We don't see any other specialists. No nutritionist. No gastroenterologist. No cranio-facial surgeon. No nothing. I hope it stays that way.

semi-annual developmental check

2010-09-20T16:13:00.002-05:00

Grandma and I drove little guy to his developmental assessment in Milwaukee today. Thank goodness for grandma--it helps to have a little moral (not to mention logistical) support.

Oliver was a superstar.

He weighs 23 # 7 oz (12%ile)
He measures 33" (50%ile)
and has a head circumference in the 65th %ile.

He had a lot of fun playing with the physical, occupational and speech therapists--and they enjoyed him as well.

He has:
the cognitive skills of a 25 month old
the fine motor skills of a 28 month old
the gross motor skills of a 20 month old
the receptive language (understanding) skills of a 24 month old, and
the expressive language (talking) skills of a 25 month old.

Which all means, that at 20 months from his due date (21 months from his birth date) he is finally catching up to where he should be...given the rest of the family.

fun

2010-09-09T12:29:00.004-05:00

Today, on our way to the zoo, Oliver got really excited about some construction on the side of the road. So, we parked in a nearby lot and watched the bu-dee (bulldozers), dup-duk (dump trucks) and di-i-i (diggers) for 1/2 and hour before heading into a nearby toy store to replace his toy bulldozer, which has been missing its scoop for a few weeks now. We never made it to the zoo. Oliver fell asleep drinking his naptime bottle on the way home.

banner week

2010-09-09T12:23:00.002-05:00

In addition to the corn and chili, Oliver has been loving on my delicious jah-par (John-Poppy Rolls), yogurt in a squeeze tube, oatmeal, chips, string cheese, hot dogs (he ate 3/4 of one at one holiday BBQ), and anything else he can physically feed himself. I think we won't have to worry about that goal of him getting 50% of his calories from real food by his 2nd birthday. If he keeps going at this rate, he'll be getting all of his calories from real food.

I think it really helps that I have been giving him his own plate, fork, spoon, bowl, food, etc.... to use himself. It makes a much bigger mess, but he's happier.

eating

2010-08-30T20:59:00.004-05:00

Oliver likes rice. I didn't know until tonight when he said, "rice" and then began shoveling it (not very effectively) with his baby spork into his mouth. Cool. And, today, he didn't want a bottle until noon--by that I mean that I offered him a bottle and he refused it. Which means he had a grand total of only 3 bottles today: before nap, after dinner and before bed. SCORE! On top of all that, he was asking for food items. It turns out he likes goldfish crackers, but he likes Cheez Its more. He likes Nutella and chocolate milk and pepper jack cheese...although he has a word for "spicy." When he gets a bit of cheese thats a bit too hot, he'll squinch up his face say his "spicy" word and ask for his chocolate milk. He's so cute.

lentil stew

2010-08-17T10:11:00.002-05:00

building stress

2010-08-01T09:40:00.003-05:00

I guess Oliver's last cardiology appointment bothered me more than I thought. I was not prepared for Oliver's valve to have shifted another category over yet. The four part scale (trivial-mild-moderate-severe) used to measure various aspects of his heart function seemed like our friend when we first brought Oliver home from the hospital: He was on the lower half of the scale for so long. Now he's not.

I run. For fun and to stay sane. I run mostly on trails. I have to pay attention to where I am putting my feet and get to watch beautiful Wisconsin wildlife as I go. Two days ago, It was raining, so instead of running, I swam: back and forth, back and forth, counting laps, carrying on an argument in my head with the doctor who performed Oliver's next surgery, who let my son die*. My heart started racing. My breath got all tangled up in my throat. I pulled up short, held my latex cap, and focused on the inside of my goggles. "Pull it together quick," I thought, "before the lifeguard thinks there is something wrong with you."

I think the next time it is raining, I will run anyway.

*Maybe you don't carry on conversations in your head with people who aren't there about situations that have not happened--I do it frequently. My husband thinks it pretty funny. When I really get into the conversation, I even start throwing my hands around to emphasize my point.

language

2010-08-01T09:34:00.002-05:00

Just yesterday, Oliver came out with a new word: backpack. Today, he spewed out three more at breakfast: waffle (wah-wah), melon (me-uh), and meat (me). He's also very interested in letters. A few weeks ago we went to a playground with a tic tac toe board. He loved turning the drums to see the X's and O's. Later that day, we went in the basement and he started shouting (ets, ets, ets). "What are you talking about, Oliver? Show me?" I asked. And so he walked over and touched the X on a packing box we have stored against a wall. He's also very interested in O (o-uh), H, A, M, N, and S. I don't remember my daughter getting this excited about letters. Hunh.
He's also signing more: shoes, bicycle, popcorn, fish (including a cute, fishy sound), music, airplane, and juice.

Oliver likes...

2010-07-12T13:06:00.001-05:00

social skillls

2010-07-06T13:01:00.002-05:00

We frequently see one of my friends and her 8 month old daughter. Oliver loves his little friend. He even has a word for her and he calls my friend "mama" (although that's not too remarkable as he calls all sorts of people mama). Sunday he spotted them at church, crawled out of our pew, ran over to theirs crawled up on their bench and tackled his little friend with a great big hug. Then he stuck his little wiggling fingers under her chin and said, "diggle, diggle, diggle, diggle, diggle, diggle, diggle" (translated: tickle).

language

2010-07-06T12:50:00.005-05:00

Oliver continues to learn new words, both spoken and signed. He also continues to delight us with his perverse sense of humor. His new words all concern things in which he has a big interest: popsicle (spoken), popcorn (spoken and signed), bee (signed and sound effect), flower (signed), chocolate (his very own sign), balloon (spoken), tickle (spoken), butterfly (signed), seal (signed), help (signed and spoken), sister (sounds more like dih-dih), duck (spoken), bus (spoken), and lots of animal noises--camel, lion, gorilla (noise and sign), bear, fish, wolf, monkey, seal--and then there is his sense of humor. Whenever we look at the picture of a bunny on his sister's wall, he still says "arf - arf." Whenever he sees his dad, he says, "mama" and this morning after crawling in our bed (big sister helped him out of his crib), he tapped me on the chest and said, "papa" then got the biggest grin on his face. He has also started nodding his head -yes- which is almost too cute for words. I'll try to capture a video.

I love my blankie

2010-07-06T12:46:00.001-05:00

kisses

2010-06-08T22:00:00.002-05:00

Oliver started giving "kisses" today. He's been giving loves for a while. When I ask him to give me a love (if he feels like it), he puts his head down on my shoulder, wraps his arms around me and croons, "awwwww." Sometimes I'll even get a few love pats from his hands.

His kisses are just like the ones big sister started giving at just about the same age: He hears the word kiss, slightly opens his mouth and plants it on your mouth--a little wet and slimy, but oh so cute. So far, he has only given kisses to big sister and me (big sister got his first kiss). He just ignores requests to "kiss papa." The chipmunk growing on Kevin's chin serves as an effective deterrent.

semi-annual cardiology appointment

2010-06-08T17:05:00.003-05:00

Yesterday, the kids and I went to Oliver's cardiology appointment. For the first time ever, I didn't use my angry voice while were there....or even feel like using it. Big sister was helpful and prompt in responding to my requests and Oliver had great fun running all over the waiting room. We even made it through the entire echocardiogram (with the help of a cell phone, three flashing toys, peanuts, an ipod, a bottle, a book, a video, and flashing ceiling lights!!!) Whew! 40 minutes is a long time for an 18-monht-old to sit still.

the upshot: another 6 month reprieve

the details:
weight: 21 pounds and 10 ounces (5 %)
height 30.75 inches (13%)
head 47.6 cm
heart rate 121
blood pressure 91/60
oxygen saturation 100 (that's a first)
his valves look pretty much the same as last time in terms of backflow
his pulmonary valve (the donor valve) has moved from the mild to the moderate category (just barely says the doctor) in terms of narrowing--he won't need surgery until the narrowing becomes severe
The doctor was happy taht Oliver is staying at the small end of the growth curve. The slower he grows the longer it will be before he outgrows his replacement part and need his next chop and hack.

summer is here!

2010-06-05T16:24:00.000-05:00

angry

2010-06-04T09:45:00.004-05:00

The last few weeks, I've been angry. The anger was triggered by two different blogs and Oliver's eating.

Two weeks ago, I read this (read to the bottom), and was once again overwhelmed with anger that I failed my daughter. Growing up as the oldest sibling of a special needs child didn't bother me too much. After I grew up, however, and was legally appointed as my parent's next-in-line, I got angry and resentful. That was the one thing about my life I wanted to spare my daughter. Everything else was fine, even desirable (the moving, the weird family values, the strange food, everything, even if I didn't like it as a child), but being the older sibling to a special needs child was definitely something I wanted to spare her. Of course, there is a chance Oliver will not need any special consideration from his sister and E seems to adore her little brother at the moment...

Yesterday, I read the blog of a family whose daughter got a heart transplant (I can't remember how I got there) and I got angry again. "I would never give permission for that," I ranted to my husband. I don't know why the thought of O getting a transplant makes me so angry (not that he needs one)--it does. I have a friend who is waiting for lungs right now. I'm not angry about that. I wish he would get his lungs soon.

I think my anger at Oliver's meager eating comes closest to home. He is not the big eater his sister was. He is a scrawny runt. I stress about that. Lately, he's seemed to get even scrawnier and I stress about that. I explained it to my friend, "I force fed him for 8 months. He didn't like the bottle, so I would wait until he was asleep and then shove a bottle in his mouth. When he finally decided he liked the bottle, it was time to switch to solid foods. He's just as much of a stinker about those as he was about the bottle. I don't have 6 hours a day to devote to feeding him. I refuse to try to feed him every 20 minutes so I hit that magic window of hungry-but-not-too-hungry when he will actually eat. I have a daughter, too. I've given him enough."

I think that's what it boils down to: I don't feel like giving him any more extras. A heart would be an extra and would require endless changes in our family's lifestyle. Getting him to eat takes away time from my daughter and things I'd like to do. His health issues are not just about him--they impact our whole family. And, another thing that bothers me a lot is that my husband and I have to make these decisions. These are decisions that only the person most affected should ever have to make. Do you want a series of open heart surgeries throughout your life? Do you want to be medicated your whole life? Do you want to have no immune system? And yet, Oliver and the other children with heart defects out there can't speak for themselves. I am left making decisions for my son, decisions that I would dread making for myself--and I don't know what he would want! Arrggghhh! Frustration!

hiking

2010-05-22T20:37:00.004-05:00

look carefully, and you will see Oliver's stick. He kept hitting Kevin and me in the head with said stick--when he wasn't dipping it in the water, dragging it in the dirt or poking it in the leaves. What is it about kids and sticks?

Forgetting -- on purpose

2010-05-12T09:42:00.006-05:00

My friend's son was born a month before Oliver. Like Oliver, Calvin had truncus. Like Oliver, he had open heart surgery to fix his broken heart. Unlike Oliver, Calvin did not make it. During the past year and a half, my friend has shared her journey through grief on her blog. In her latest post, she wrote about the balance between remembering her son and remembering her daughters, who are living; cherishing his memory while learning to focus on other things again.

Her post struck a cord. A few days ago, while snuggling with Oliver, I allowed the door of memory to open. It had only just begun to crack open, when I felt myself drowning in waves of terror. I slammed that door shut as hard and as fast as I could. At some point, I will walk through not only the figurative doors of memory, but also the literal doors of the surgical waiting room, again.

For now, Oliver has no complications. His sheer normalcy allows me to forget--and I forget with a vengence. If I remember, fear paralyzes me. And so I choose to forget the past, forget the future and focus, with fierce determination, on today.

Today, I am a mother. Today, my two children giggle and cry and play together. Today, my son asks me to juggle, spins the wheels on his trucks, tackles his sister, and feeds his baby doll.

fun

2010-05-12T09:07:00.002-05:00

Oliver now says "juggle," properly signs "more" and takes care of a baby doll. He's fascinated by our 6-month old friend who comes over several times a week, so I decided to strap one of big sister's baby dolls into our old infant car seat and see what happened. He walks around it, babbles at it, covers it with its blankie, feeds it its bottle, and tries to climb in with it.

Big sister and I made play dough for O yesterday. We thought he'd have fun squishing it. Nope: he was more interested in all of the other toys we put on his tray--the spoons, containers, etc...

self feeding

2010-05-10T09:13:00.001-05:00

He's messy, but he gets the job done.

language explosion

2010-04-24T12:31:00.002-05:00

Well, kind of....

Oliver now attempts to say: duck, dog, cow, moo, arf-arf, mpt (elephant noise), roar (for lions), bunny, button, ball (he says that one a lot--like, he won't stop if he can see a ball until he gets the ball), water, ding-a-ding-ding (for some chimes and bells), get that, over there, bye bye, there-he-is (for peek a boo)...
...and my all-time favorite: "bye-bye papa."

Of course, a lot of the words come out sounding like "ba" or "da" or "du"....but, hey, we've got context.

He also likes to talk on the phone (pretend), feed the adults (real), and brush other people's hair

He still drags over toys and books and then climbs in my lap.

He even teases me. Evelyn just got a picture of a bunny. He will look at it and say, "dog." "No," I'll say, "that's not a dog its a bunny. The bunny goes hop hop." The more vehement I am, the more he giggles before he repeats: "dog. arf-arf."

music

2010-04-19T10:05:00.004-05:00

One of Oliver's first words was dance. He loves being danced, listening to music, playing the piano with both fists, and more recently, dancing--he and his sister will twirl around the front room after big sister programs the digital piano to play fur Elise.

Then, yesterday, on the way home from church, he started singing in the car.

more development

2010-04-13T08:40:00.003-05:00

Oliver has been signing "water" for a while now. He does it for a drink, when he sees the ocean, when he sees a river, the bath, etc...

He also still frequently retrieves interesting objects and then brings them over to climb onto my lap and examine.

He also follows simple instructions: "Take the toy to papa." "Bring me your stompers (shoes)."

He is very interested in dogs. Every time he sees one or a picture of one he either starts barking or says, "Dah" "Dah" (imagine dog without the g)

new word

2010-04-11T10:28:00.001-05:00

"butt," "butt," "butt." which translated means button, i.e., the buttons on my phone, my shirt, the remote, and my computer keyboard as well as light switches, etc...

new tricks

2010-04-09T10:17:00.003-05:00

Oliver is now proficient at getting his shoes off...and throwing them out of his stroller. We almost lost one for good at the Roman Agora, yesterday.

Oliver also now ASKS for food! He holds his mouth open and begs for yummy treats. I guess Greek cuisine agrees with the kid.

He has also started saying more "words" (touch, hot, get that, over there) and manipulating his environment. He loves putting lids on and off of things and turning switches on and off and turning wheels and knobs and anything else he can get his hands on.

Yes, he's made his first trans-Atlantic flight and did well on the plane. However, we had some problems during our stop over in London as we couldnt' find prune juice anywhere.

Bad Dream

2010-04-06T07:26:00.000-05:00

Last night I dreamt that my dad was visiting our family in Wisconsin. At some point during the visit, Oliver had a cardiology appointment. During the appointment the five medicall personnel determined that Oliver needed immediate surgery. So, they whisked him away, telling me that they were going to cut a wedge of lemon and begin processing it as soon as they started Oliver's surgery. Once they had him open, they planned to use the lemon skin, not the rind, the skin, to repair Oliver's heart.

They took him away and then, after an indeterminate amount of time, I saw them begin emerging from the operating room into the glassed in exam room. I pressed my face and hands against the glass trying to read their faces, desperate to know how the surgery had gone, when I saw the fifth person walk out of the operating room cradling Oliver in their arms.

As this person laid Oliver down on the bed, one of the other doctors came over to me and told me I should hold him for the next five hours before putting him down. But, he warned me not to rock him or jostle him as any movement could cause him to destabilize. I looked at Oliver and realized he was sitting on the exam table, slumped jack-knifed in half. I could only see his back with a little scar over his right kidney. At least, he was jack-knifed over until he flopped back into the arms of the waiting medical personel.

This, 15 months after his first surgery.

Herma Heart Center

2010-03-12T08:37:00.002-06:00

Oliver and I drove to the Herma Heart Center for a check up on Monday. Everything looked good.

At 14 months from his due date, 15 months from his delivery date:

His oxygen saturation was 97%
He weighed 20#6oz (5%)
He measured 31.5 inches long (75%)
His noggin was 18 3/4" (75%)

Like his father, he's a long, lean fighting machine...with a really large head. "an orange on a popsicle stick." Of course, the long, lean body type is associated with kids who have had heart problems, as well.

His development ranged from 13 months (fine motor skills) to 17 months (language skills). So, he's right on track there as well.

Oliver seemed to enjoy the "games" OT, PT and speech played to assess him. Even more, he enjoyed running around the hospital...especially, when he found the yellow poles.

development

2010-02-22T19:11:00.002-06:00

Oliver has:
* two new teeth: the one-year old molars on his left side
*several words: bye-bye (with a wave), ah duh (with the sign for "all done"), ditz (with dancing arms and, sometimes, feet), mama (he's only said this one twice, but both times in context), and (the sign for more).
*his first word was "all done", which popped up last week.
*begun blindly reaching onto table tops
*He's also mastered the art of climbing onto our ottoman, then into the rocking chair to get the remote controls on our side table. This morning, I scooted the chair away from the side table, so instead of slobbering all over the remotes, he ended up doing a header onto the floor between the chair and the table.

hours of fun

2010-02-22T19:08:00.000-06:00

reading

2010-02-16T21:44:00.000-06:00

lunch

2010-02-10T21:29:00.001-06:00

does it get easier?

2010-02-01T14:46:00.004-06:00

My friend just asked if I have found it getting "easier" as time goes by, being the parent of a child with a chd. Easier is the wrong word, she said, but she couldn't think of the right one.

Maybe the right was to say it is: I have become more easy with the situation.

In my mind, Oliver made the switch from a heart-baby to my snuggly boy quite a while ago.

As time has progressed, I've gained more and more confidence in his body's ability to do what it needs to do. It helps that he's had consistently good reports from his cardiologist and that he's hit his developmental milestones--sitting, walking, climbing--just a little behind his sister. Every day that goes by, my vigilance relaxes a bit more and my worries slip a bit further to the back of my mind. I even get surprised, sometimes, when I see the scars on his chest.

Of course, I still get thrown back when friends face the next stage of their journey. It reminds me that we will be there, too, someday. Pictures of other babies in right after their surgery, like the one shown on 60 Minutes last night, also discomfort me. But they don't send me off onto a 3-day crying jag.

I guess I've adapted and found my new normal.

old news?

2010-01-31T20:15:00.001-06:00

Watching 60 minutes today, I learned that snowboarder Shaun White was born with a congenital heart defect (ToF) and had open heart surgery as a baby. Seeing the picture of his baby-self with big chest bandages jerked me back a year. Then, seeing him fly though the air brought home the cardiologist's comment at our last appointment. He said he'd find a sport for Oliver for every season, if that's what he wanted when he got older.

oliver likes...

2010-01-20T09:11:00.002-06:00

11 months of growth...

2010-01-08T11:58:00.002-06:00

pears...

2010-01-02T20:44:00.002-06:00

...good for what ails you.

Oliver still prefers his bottles. For a while, he started eating more, but now he's back to a few bites of this, a little taste of that, and "give me my bottle NOW!"

-sigh-

favorite new toy

2009-12-30T18:51:00.003-06:00

He grabbed it while I was making dinner and hasn't let go since.

the difference...

2009-12-26T16:18:00.001-06:00

...a year makes

the sleep of the just

2009-12-20T09:54:00.002-06:00

Poor little O got the stomach flu on Friday--he was a happy little puker. Then, yesterday, it took a turn south. We've already bleached at least five outfits and his sheets once already.

birthday party

2009-12-14T18:17:00.002-06:00

p

We celebrated Oliver's birthday over the weekend. Like most one-year-olds he was interested in the boxes and the paper and being his own stubborn self, he refused to let the cake anywhere near his face, however. He just poked it, and squished it, and hit it and threw it on the floor. Classic!

semi-annual cardiology appointment

2009-12-14T18:05:00.003-06:00

Yup, we graduated to biannual checkups! Oliver looks and sounds great from the outside and looks about the same on the inside, according to his cardiologist. One of his ventricles did grow a bit faster than the rest of his heart since his last checkup, but Oliver's doctor guessed it was because Oliver has outgrown his medication and there is more backflow across his truncal/aortic valve-> putting more pressure on said ventricle. So, we doubled his enalapril dose: to a paltry 0.4 ml(mg) twice a day. But, in the best news of the day, the, in my opinion, very conservative cardiologist said we could "keep bragging about him" and that Oliver should get "many years" out of his homograft before needing his next surgery. What a change from a our first visit, when he said we might need surgery within months...and many kids do. Oliver's body has just tolerated his replacement part very well.

In other news:
weight: 18 and 13 (8.54 kg)
length: 28.6" (72.6 cm)
head circumference: 47.3 cm
bp: 97/63
hr: 119

holding hands

2009-12-11T22:30:00.003-06:00

Today, Oliver took my hand, well, my finger, and started walking. He led me to his favorite d-o-ing-Y doorstop, looked at it, turned around, led me to his sister's bed, looked at it, turned around, led me to his blankie, looked at it, turned around. He kept up a constant stream of gurgles, raspberries and coos and never once did he let go or sit down or attempt to play with his favorite things. He just wanted to show me the things that he liked.

what is this stuff, mom?

2009-12-07T20:59:00.003-06:00

Oliver loved digging in the snow for all of 5 minutes....until he realized he could pull his mittens (sock) off. I caught him the first time and stuck his hand back inside, but he just yanked it off again, plunged his hand into the snow and then started crying big, sad tears. That snow is COLD!

mobility

2009-11-29T18:17:00.000-06:00

Oliver has decided to walk. He's been able to walk for a while, but only short distances and only if forced. Now, when given the choice, he'll walk as often as he crawls. He'll also stop mid-journey, turn around and head in a different direction. He still can't stand up from a sit. He uses furniture to pull up, but I'm pretty impressed. Now, if only he would start using some form of communication other than grunting and reaching so I could figure out what he is willing to eat!

feeding update

2009-11-29T18:12:00.001-06:00

I just don't want to give Oliver solid foods. It took so much work to get him to drink from a bottle and he kept fighting it even after he mastered the basic concept, that I don't want to move on. I want a little more time to enjoy the ease with which he now takes his bottle!!!!

Switching to solids has been anything but easy. His big sister ate everything and anything she could get her hands on. Oliver is more particular. Take tonight, for example. I let him have a few spoonfuls of my root beer float. He really liked it. He grunted, reached for it and opened his mouth like a little bird, but only if I fed it to him on a spoon. When I tried to let him drink it from the cup, he refused....this despite the fact that he loves drinking water from a cup. He knows what he wants and how he wants it.

gratitude: z

2009-11-29T18:05:00.002-06:00

Z is for Z-Z-Z-Z-Z.

Oliver has started sleeping all the way through the night: 8:30 pm to 6:30am ! He did it at least four times last week. I love the extra shut-eye.

gratitude: Y

2009-11-26T10:17:00.003-06:00

Y is for "Yipee!!" 'cause I'm not on day 20 of a 40 day hospital stay today!!!!

HAPPY THANKSGIVING!

2009 BERBEE DERBY -- Like a Thanksgiving Day Parade, Only Faster

gratitude: V, W, & X

2009-11-25T15:26:00.002-06:00

I stalled on my gratitude list for a long time because I just couldn't think of anything that started with the letter V. Today, while rocking my sleeping baby and looking out our front window, it came to me:

V is for Vision:
The heart surgeon's vision of how Oliver's heart should look,
My mother's vision of what it means to be part of a family,
The vision that allows me to see my children, and my husband and the natural world around us.

W is for Windows:
The windows in my hospital room while I was on bed rest.

X is for X-ray:
I know, there are not very many other words that start with X, but truly,
I am grateful that the medical staff at the Children's Hospital of Wisconsin could wheel a portable X-ray machine into Oliver's room, cover his little boy parts with a lead shield and then take a peek at his lungs, and his feeding tubes and the wires that eventually twisted his sternum shut.

time for bed

2009-11-24T21:35:00.003-06:00

a day like this

2009-11-21T13:46:00.005-06:00

goodbye, Isabella

more trouble

2009-11-17T15:34:00.001-06:00

I like...

2009-11-13T15:49:00.001-06:00

...ice cream!

for Margaret

2009-11-10T09:42:00.001-06:00

Per your suggestion, I baked a cake. However, I don't think it will survive international shipping! So, enjoy: banana cake with boiled white icing.

Today

2009-11-10T08:43:00.002-06:00

One year ago today, Calvin and Georgia were born and their family was complete. Happy Birthday!

Today, the brother of Oliver's last roommate is scheduled for open heart surgery (yes, that's two brothers with broken hearts). Good luck, Karver! Our thoughts are with you and your family.

one year

2009-11-06T21:06:00.003-06:00

One year ago today, I started bleeding in the middle of a bookstore. One year ago, my daughter peppered me with nervous questions from the backseat of our car. One year ago, I entered the hospital for what would end up being the duration of my pregnancy.

Today, I planned to re-visit the bookstore with our whole family to take a picture, but life intruded. Instead, we took dinner to two women in distress and their families: One of them was just released from the hospital yesterday. It seemed somehow proper and fitting: like coming full circle.

Halloween

2009-10-31T21:48:00.002-05:00

Oliver went Trick or Treating with Papa and Big Sissy. He slept in his stroller, while they walked up and down the street with our neighbors. He didn't, however, get to go to any of the parties to which we were invited. He finally got over his cold yesterday--after two weeks of coughing and crying, and I really don't want to go through that again. I enjoy my sleep. He's not going to church tomorrow, either. Maybe, I'll let him out of quarantine in another few years!!!

eating

2009-10-28T20:39:00.004-05:00

Oliver ate like a man today: ham and bean soup for his mid-morning snack, part of my omelet for lunch, apple sauce for a snack and enchiladas for dinner. And he WANTED the food. He kept opening his mouth asking for more (well, except for the applesauce). I just need to feed the kid warm, salty, spicy food and he's happy. I think it helps that he's finally getting over his cold.

latent fear

2009-10-26T20:58:00.002-05:00

Ashela asked if I worry about Oliver's heart bursting (paraphrase) when he cries really hard. I don't really, mainly because Oliver doesn't often do it. However, right now he's going on a week of a cold and I must admit I worry that the germs will get into his replacement parts and cause some sort of damage. I also worry that his lungs will wet down again and that will cause problems. I worry that he's not eating much, cause he doesn't have much in reserve. All worries courtesy of his funky heart.

walking

2009-10-25T21:12:00.001-05:00

Oliver's gotten a little braver today. He took 5 steps to mom a few times. He's also turned loose of one item of furniture to go get something else.

sleeping

2009-10-21T10:31:00.003-05:00

We've started (and maybe successfully completed) sleep training Oliver. Up until now, we've held him while he fell asleep. He usually falls asleep fairly quickly and I enjoy dancing with him in my arms, so it hasn't been a big deal.

However, he's getting bigger AND he's had a cold. Taken together these things mean: he's cranky, having a hard time falling asleep, and heavy. It hurts my back to hold him while he squirms and coughs and grumps. So, two nights ago, we let him cry himself back to sleep when he woke up (for the 4th time) at 4:30 in the morning. He was so tired that he didn't cry very hard...and it only lasted 20 minutes or so. It did wake up big sissy (they share a room), but she just climbed into bed with us and waited him out. Last night, I put him down awake again. There was less fussing than the previous morning, and he fell asleep and stayed that way. Of course, we didn't, because he keeps coughing.

This morning, as soon as I put him horizontal in his bed for his nap, he started coughing, which woke him up. I calmed him down, strapped him in his bouncy seat, and left the darkened room. He played happily for a while and then it got quiet. He's currently fast asleep and not coughing as much. Yay for bouncy seats!

me like chocolate

2009-10-21T10:29:00.000-05:00

Oliver tried his first mini Twix bar yesterday. He grabbed on with his teeth and wouldn't let go.

Wants to walk

2009-10-19T10:29:00.004-05:00

Oliver hasn't wanted us to hold his hands and walk him around much lately as he likes to crawl and get things himself. However, he really likes to hold on to things (stools, chairs, etc.) and walk along behind them as he pushes them around. He especially likes his walker, happy to go back and forth across the playroom more times than we're willing to turn him around (He doesn't turn yet).

cranio-facial specialist

2009-10-16T21:50:00.002-05:00

I waited, really I did. Back in, oh, June(?), the NP said that if Oliver's head shape hadn't "resolved" by 9 months, I could bring him back in...so I did, on his 10 month mark, because, well, his head is still slightly asymmetric (as are ours all). To me, the persistent assymetry meant that his head shape hadn't "resolved."

This time I saw the doc. He reiterated what I heard last time: "For mild to moderate flattening, children have the same outcome regardless of whether the parents simply reposition them or they get a helmet." But, he continued, that outcome is only a 60% reduction in the asymmetry. In other words, Oliver's head won't turn into a perfectly symmetrical noggin (rather, it may, but it also may not) no matter what I do.

I can live with that. What I didn't want to deal with was the case in which there was something more we could have done to correct his very mild flattening, but we didn't do it.

nope, nope, no...

2009-10-09T21:36:00.001-05:00

...well, maybe, if you nibble my thighs.

Oliver likes...

2009-10-06T11:57:00.000-05:00

...pizza (but I didn't get a picture). He grabbed onto the tiny triangle of crispy goodness and gummed it into mush.

oh yeah,

2009-09-29T08:29:00.001-05:00

I forgot to mention that the doctor didn't see any irregular heart beats during the entire echo, yesterday. This is fantastic. Oliver has had an occasional arrhythmia since his one prolonged spell in the hospital. Hopefully, it will stay gone.

cardiology appointment, part ???

2009-09-28T14:43:00.005-05:00

Oliver's check up went very smoothly. It helped that Evelyn went to a friend's house to play.

Big picture: All is well.

The numbers:
BP 118/43
HR 113
WT 17 lb 2 oz
HT 27.5 in
HC 46.5 cm

The pictures:
His chest X-rays still look a bit wet, but drier than last time.
His echo looked similar to last time: mild narrowing of and backflow through his homograft/pulmonary and truncal/aortic valves. No pressure gradient along the homograft. His aortic/truncal valve is acting as if it had three leaflets (normal) even though I seem to remember it has four.
His chest sounds good: no crackling.

The meds:
discontinue his diuretic (spironolactone with HCTZ) entirely (YAY!)
discontinue his antacid (Prevacid) entirely after consulting with his pediatrician (YAY!)
switch from captopril 3x a day to aldacazide 2x a day once we finish up the captopril we have in the fridge (YAY!)

Future plans:
Next appointment will be on December 14.
Oliver's cardiologist cautiously projected surgery won't be necessary for years (what a beautiful word: years).
Oliver has no hard-and-fast proscriptions against participation in sports as he grows, except maybe wrestling...because of all the isometric straining...apparently it can exacerbate the backflow thorugh his funky truncal valve. His cardiologist said that as Oliver grows he will work to find him a sport for every season if that's what he wants. Apparently, contact sports might even be o.k. depending on what kinds of replacement valves Oliver gets in the future and how his heart is functioning.

Summary:
We will taper Oliver down to 2 meds a day (down from 6 now) in the coming weeks.
Oliver's weight is tracking the growth curve...there is no need to worry about his nutrition.
Oliver is growing into his heart, so his lungs should continue to dry out.
His sternum should grow around the bony lump on his chest as he grows, making it less obvious.
He does not qualify for RSV shots this year: he is so healthy that the doctors assume he will be able to fight it off on his own.

Cardiology appointment

2009-09-26T11:15:00.002-05:00

Oliver has his check up on Monday and I'm terrified.

I don't want to take him. I don't want to hold him still while he screams during the echo. I don't want to know how his insides are doing. I don't want to once again enter the realm of no control--where I have no say in my son's care, where I just get to wait while the doctors decide what to do to him and then wait some more, heart breaking while they execute their plans.

Poem

2009-09-24T17:05:00.002-05:00

While searching for a letter my mother wrote to me shortly after my birth and gave to me shortly before the birth of my daughter, I ran across this poem. I remember sticking the 2" by 3" slip of paper to my mirror in college. Experiences towards the end of high school taught me this lesson once. During the past few years, I've learned it again.

We Wear the Mask

We wear the mask that grins and lies,
It hides our cheeks and shades our eyes--
This debt we pay to human guile;
With torn and bleeding hearts we smile
And mouth with myriad subtleties,

Why should the world be over-wise,
In counting all our tears and sighs?
Nay, let them only see us, while
We wear the mask.

We smile, but oh great Christ, our cries
To Thee from tortured souls arise.
We sing, but oh the clay is vile
Beneath our feet and long the mile,
But let the world dream otherwise,
We wear the mask!

-P.L. Dunbar

Houston, we have a...

2009-09-23T13:37:00.005-05:00

...climber!

So, there I was, scrubbing the disgusting cabinets in our kitchen. I had opened the pot cupboard and the last time I looked, Oliver was happily banging the cupboard door and pulling out pots and pans. Then, I heard his raspberries getting higher. 'Surely not,' I thought, but when I turned around, there he was eye level with the sink. How he got there, I think I know. Big sister did the same thing. We eventually decided it made more sense to teach her how to safely get down than to discourage her sense of adventure. Many nannies at the playgrounds we frequented would try to "rescue" her... It looks like we're in for it again.

Oliver likes...

2009-09-22T10:03:00.002-05:00

pretzels (and anything else salty). He grabs them by the fist-full and slobbers them all over his shirt front, and pants and everyone else around him.

9 mo. check up

2009-09-17T21:22:00.002-05:00

16# 13 oz
28.5"
big head
.
.
.
and that's all folks!

bliss

2009-09-17T21:18:00.002-05:00

mobile

2009-09-17T21:01:00.002-05:00

2009-09-11T15:51:00.005-05:00

My friend, Margaret, nominated this blog for an honest scrap award. Without further ado, here are seven blogs that give honest snapshots of life and ten facts about me.1. Jennifer http://therepps.net/wordpress/

2. Rhonda http://hammockpotato.blogspot.com/

3. Nancy http://rebekahgraceellis.blogspot.com/

4. Ashlea http://cadenkonecny.blogspot.com/

5. Teddie http://itsallwet.blogspot.com/

6. Stephanie http://hereweblogagain.blogspot.com/

7. Chris and Laura http://www.caringbridge.org/visit/babettezimmy

Ten facts about myself:

10) I still worry that "the doctors" will come and take my son away.

9) My husband came home an hour late a few nights ago. By the time he arrived, I had checked the local news for homicides and bus accidents and planned my life as a single mother, including hours I would work and what I'd do about child care.

8) I have "symmetry issues" -- picture frames must be squared on the wall and if you do me a favor, I "need" to repay it.

7) I have a naively optimistic view of other people. I choose to believe that people don't intentionally try to hurt each other. When 9/11 happened, my first reaction was to think that some goofy kid had accidentally flown his airplane into the first tower. When the second plane hit, I had to abandon my Pollyanna explanation.

6) Contrary to my mother's claims, we are quite a bit alike. We both love color (yes, I do, mom!). We both strike up conversations with random strangers (as does my mother's mother. This habit used to mortify me). We both feel driven to fix the hurts in people around us.

5) I love, LOVE spreadsheets and graphs and charts. I can program Excel spreadsheets to perform magical organizational feats for me.

4) Despite my drive for clutter-free organization, I don't feel driven to keep things clean (this includes my kids' hands). Don't get me wrong, we're not filthy folk, I just believe that a little clean dirt or a few leaves never hurt anyone. I haven't caught my kids eating bugs, yet. I think I'd draw the line there.

3) My husband takes Oliver to the cardiologist's office.

2) Sometimes, I forget the intensity of our experiences in Milwaukee.

1) When my husband finishes graduate school, we will choose our next jobs based on where we believe Oliver will receive the best care and where we will have the best family support.

pincer grip

2009-09-11T14:54:00.003-05:00

Oliver's recent adventures in eating:

Pears - juicy and tasty
Tomatillo Chili Sauce with Pork drippings - spicy and tasty
Cheerios - tasty
Avocado - squishy

I saw it

2009-09-10T10:11:00.002-05:00

Really, I did. Oliver was standing next to my prone form, holding onto my hip for support. Then, he let go and took two steps up to my head.

Then, last night, he crawled half-way down the hall into our bedroom so he could play with the boing-y thing on the back of the door. To most people, the boing-y thing is a door stop, to a baby, it is entertainment. Boing. Boing. B-B-b-boing!

No wonder he's eating so much, lately...and sleeping. The past three days, he's clocked in one two-plus hour afternoon nap. I've been waiting for this.

so very blessed

2009-09-07T12:52:00.004-05:00

The past few days, I've been feeling so very blessed. I could sniff Oliver all day long--his warm, milk breath, the sharp sweet smell of his sweaty scalp, his sun-fresh skin. Yesterday, I came into the playroom to find him and his sister peacefully playing side-by-side. This thing fills me: my children are alive and they are mine. And it could have been otherwise.