A Broken Heart

Incidence:
35,000 children are born with heart defects every year (American Heart Association)
Only 1% of those children have truncus arteriosus (many sources, including the Herma Heart Center where Turnip may be treated)
That means about 350 babies are born in the U.S. with the same condition as Turnip every year. (330 according to the Morbidity and Mortality Weekly Report from jan 6, 2006)
Treatment:
Surgery usually happens at 6-12 weeks (EPA, page 4)
15-50% of children require another surgery within the next five years (i.b.i.d.)
All heart valves are replaced after 12 years(i.b.i.d.)
Newborns with truncus arteriosus stayed in the hospital for an average of 30 days during 2003 (CDC, table 2)
The hospital charges for this stay (not including lab tests and doctor fees) ran to $200,000 (CDC, table 2)
Mortality:
In a small study published in 1996, 6% of infants died before surgery and 10% died during surgery (EPA, page 4)
In a national survey, 20% of newborns with truncus arteriosus died in the hospital in 2003 (CDC, table 1)

Thursday, December 16, 2010

the aftermath...

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.....

Monday, December 6, 2010

semi-annual cardiology appointment

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.

Wednesday, December 1, 2010

eating epiphany

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. 

Thursday, November 25, 2010

bottles, part III

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).

Monday, November 22, 2010

This close:

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.

Tuesday, November 16, 2010

language...

...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?

Wednesday, November 10, 2010

stories

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.

Wednesday, October 20, 2010

vehemence

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.

Tuesday, October 19, 2010

bottles, part II

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.

Thursday, October 14, 2010

two bottles a day

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

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. 

Wednesday, October 6, 2010

problem solved

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

Saturday, October 2, 2010

Oliver loves...


...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

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.

Monday, September 20, 2010

semi-annual developmental check

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.

Thursday, September 9, 2010

fun

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



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.

Monday, August 30, 2010

eating

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.

Tuesday, August 17, 2010

Sunday, August 1, 2010

building stress

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

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.

Monday, July 12, 2010

Tuesday, July 6, 2010

social skillls

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

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

Tuesday, June 8, 2010

kisses

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

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.

Saturday, June 5, 2010

Friday, June 4, 2010

angry

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!

Saturday, May 22, 2010

hiking


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?

Wednesday, May 12, 2010

Forgetting -- on purpose

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


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...

Monday, May 10, 2010

self feeding

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

Saturday, April 24, 2010

language explosion

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."

Monday, April 19, 2010

music

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.

video

Tuesday, April 13, 2010

more development

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)

Sunday, April 11, 2010

new word

"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...

Friday, April 9, 2010

new tricks


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.

Tuesday, April 6, 2010

Bad Dream

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.

Friday, March 12, 2010

Herma Heart Center



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.

video

Monday, February 22, 2010

development

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

Tuesday, February 16, 2010

Wednesday, February 10, 2010

Monday, February 1, 2010

does it get easier?

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.

Sunday, January 31, 2010

old news?

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.

Wednesday, January 20, 2010

Friday, January 8, 2010

Saturday, January 2, 2010

pears...





...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-