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)

Monday, March 30, 2009

cardiology appointment, the third

Today's appointment went rather well.

There are no changes in Oliver's heart function:
He still has mild to moderate narrowing and backflow across his aortic valve (remember, ugly but functional?).
He still has a mild gradient across his conduit (as expected).
He still has a small hole between the two large pumping chambers of his heart (ventricles).

His lungs sound better than they did last time.

He's continued to grow, although he's still on the small end of the growth curve (5.21 kg, 11#8oz).

The cardiologist said that Oliver will most likely not need his next surgery within the next month. In fact, he said, he'd be surprised if he needed it before 9-12 months. The slower small man grows, the longer his conduit will last. The longer he can go before his next surgery, the bigger the replacement conduit will be and the longer it will last before he needs his third surgery.

Our next appointment is scheduled for April 27th--that's four weeks from now.

In honor of Calvin

Calvin Zachary Mayer was born on 10 November 2008. Like Oliver, he had a broken heart. Although his doctors repaired his heart, he died of complications six days after he was born.

I like to think that the two boys crossed paths on their ways to and from this life. I like to think that Calvin gave Oliver a big hug and told him to be brave; told him that a family's love would make it all worthwhile. I like to think that Oliver smiled at Calvin and said thank you to his friend before he woke up, slippery and scared from his sudden birth.

Today, in honor of Calvin, Oliver is wearing an outfit Calvin's mother lovingly picked out for her little boy--clothes she sent to me once she felt confident that Oliver would make it home.

Sunday, March 29, 2009

emerging


Oliver made his first few few forays into the real world this week. On our way home from his Synagis shot, Oliver, Evelyn and I stopped at Border's. The last time I took Evelyn to Border's was the day I went into the hospital (Nov 6). It felt good to take them both...and then leave without any untoward events.

Then, Saturday, we decided to go visit my Aunt Mary who lives an hour away. It was the first long-ish car trip we'd taken with both kids. They did remarkably well. Big sister was pretty cute. She kept little brother amused on the way there and got frustrated at me when I tried to help. Apparently, I was doing it wrong.

We're still planning on keeping him pretty sequestered until RSV season is over (end of April). I keep hearing Dr. G's pronouncement: "I can't believe he ate on his own and gained weight before his surgery. His lungs are so underdeveloped." We want to avoid any respiratory illnesses, if at all possible, until his lungs have had a LONG time to play catch up.

hey, what's this?

video
I've got a left hand, and I'm going to look at it.

Friday, March 27, 2009

we're off...

...to get Oliver's 3rd Synagis shot. I have mixed feelings about the whole thing. On the one hand, I don't want him to get RSV. ON the other hand, he will definitely have side effects from the shot...which I don't like. And...the nurse said to schedule TWO HOURS for the shot.

Apparently, they have to weigh and measure him, then calculate how much of the drug to give the little man, then send the order to the pharmacicst who mixes it and sends it back up. Then, after Oliver gets the shot, he has to stay at the hospital for 30 minutes to make sure he doesn't have an extreme reaction. I guess I ddint' realize how much went into the shots as he was already an inpatient when he got the last two. Also, one nurse said the shots run around $1500 a pop (no, I didn't forget a decimal point). I suppose that's cheaper than hopsitalizing the kid. I seem to remember that the room rate is around $2000/day.

Monday, March 23, 2009

In the last week:

Oliver has
-discovered his left hand "What, I've got two of these things? Better put it in my mouth."
-started laughing, but only if you're really funny. It's a soft wheeze sort of a laugh: "hunh."
-started holding his entire trunk and head up for 15 seconds at a time.
-stayed sequestered at home (with the exception of a few walks around the block).
-continued to gain weight. As of today he's up to 5.14 kilos (11 lbs 5 ozs).
-slept most of one night in his crib down the hall from mom and dad's room (Yup, we can hear him cry when he wakes up hungry).

Mom has
-continued to obsess about the amount he's eating (despite the fact that he's clearly gaining weight)
-not checked his heart rate at all.
-only checked his breathing rate once.
-switched him over to the 3-6 month clothes (even though they're a bit big).
-had a nasty sore throat

gratitude: M

M is for Margaret and Michelle and Tessa and all of the other Mommies (and Daddies) who have traveled this road with me.

Thursday, March 19, 2009

gratitude: L

L is for life...

..with all of the tubes, wires, drugs, and drama.

and then, with my compulsive hand-washing, heart-beat checking, breath counting, food monitoring, and head-shape obsessing.

small fingers, stinky feet, soft fuzz, and little snuffly breaths: I love you, my little boy.

He reaches...

video
Babies are supposed to reach for toys by around three months. Oliver didn't...until I finally located our skwish toy. I thought this toy was so cool when I bought it for my daughter at our toy store in California. She wasn't so impressed, but Oliver loves watching it...and reaching for it.

the care and feeding of Oliver

Preparation:

step 1: Make a 550 ml batch of formula (One mother suggested we use the containers they brought Oliver's pre-mixed formula in in the hospital. We tried it, but the mouth of the jug was too narrow (we don't have a funnel) so we use an old spaghetti sauce jar. I figured that the glass would clean more thoroughly than anything else) and split among all available bottles (He now eats enough that the hospital bottles we brought home are too small, so we bought some glass bottles...more environmentally friendly and stuff like that). Oliver now uses the regular 0-3 month nipples from evenflo as he has gotten better at sucking and now gags with the magic red ones...I put the red nipples on bottles with less than 80 ccs as a visual cue for those middle of the night feedings (If anyone wants magic red nipples, I have 200 left over!).

refrigerate (Yet another use for the many basins we brought home from the hospital. We keep his socks in one, his bath supplies in another, etc...) This only needs to be done once a day as the formula is good for 24+ hours, if properly refrigerated.
step 2: draw up Oliver's meds, place them in a bowl with a fast-flow nipple (One of the nurses suggested we collect all of the medication syrniges Oliver used in the hospital. We now have a very large supply! They work MUCH better than the syringes we can get at our drug store. They also have handy caps so we can load up his meds for the day and take them with us if we go out).
step 3: place a mug full of water in the microwave and have Evelyn press 130. Place one 80 cc bottle next to the microwave to begin warming (they can sit for 4 hours).

When Oliver starts to get hungry:

step 1: press start on the microwave, locate a burp cloth, take the pre-drawn meds to wherever you will be feeding him.

step 2: change Oliver's diaper.

step 3: when the microwave dings, place the bottle in the boiling water and transport to where you will be feeding Oliver.
step 4: while the bottle warms, place the fast-flow nipple in Oliver's mouth and shoot the meds in the back of it (This is much trickier than it sounds). Don't let him swallow too much air.

step 5: Calm Oliver and get him to sleep for a few minutes

step 6: Let Oliver eat...but, you'll need to pull the nipple part-way out of his mouth every few sucks at the beginning of the feed to force him to breathe. If you forget, he'll squall and squirm and stop eating.

step 7: If he still seems hungry after he eats most of his bottle, go pull another 40 cc's out of the fridge and pop it in the mug of still hot water. Let him burp. The only way I can get Oliver to burp is to let him jump on my lap.

step 8: After he burps and jump/stands for a few minutes, pour the now warm 40 cc's into his bottle and let him top off (Once he starts working on a bottle, the formula inside is only good for one hour).

step 9: pack him in his carrier to sleep.
step 10: record the time he took his meds, the time he ate, and how much he ate.
step 11a: Either dump his bottles, nipples, and syringes into the bowl of soapy water to soak or
step 11b: Wash all of Oliver's bottles and nipples (this only needs to be done once a day and can be done in the dishwasher. The cool little contraption below holds all of the nipples and nipple rings. However, if the bottles are washed in the dishwasher, they come out smelling like detergent, so, rinse the bottles thoroughly.).
Step 12: Prepare for the next feed.

Sunday, March 15, 2009

gratitude: K

K is for Kevin and kisses (particularly Kevin's).

Sometimes I forget how blessed I am to have a husband who treats me like his most precious treasure...and who treasures his children.

3 months old: my favorite things

Oliver has two new favorite activities: watching his right hand and standing up.
video video
He really is supporting much of his own weight in the second video.

Saturday, March 14, 2009

out and about


A few days ago, we went on a walk. Big sister wanted to ride in her stroller. I'll be glad when Kevin gets our double stroller fixed.

Wednesday, March 11, 2009

horrible rash/baby acne

Way back in the hospital, baby bear was plagued with blood in his stool. The nurses scratched their heads. The cardiologists scratched their heads. The GI docs came in and proclaimed: milk protein allergy. And so, baby bear was switched off of breast milk for the second time and onto a new specialty formula (Alimentum). After a day, the blood disappeared. The GI doc said, "see, I was right."

Dauntless, mama bear said, "Hmmm.... maybe." And so, when mama bear took baby bear home, she offered him breast milk. And, he loved it. And then he got nasty diahrrea. And the rash on his face and chest and scalp and hands got worse. Still undeterred, mama bear waited a few days and tried again. After a few sucks, baby bear got mad at the milk. He yelled at it. He spit it out. And then, the rash on his face and chest and scalp and hands got worse again. And he got diahrrea, again.

Mama bear shook her head and said, "Oh, the GI doc was right."

Two weeks entirely milk free and baby bear's rash (blotchy red spots with blisters and acne mixed in) has disappeared. He still yells at his food sometimes. But, usually its just to complain that it took so long to get to him.

Moral: well, there isn't one really...the story just sounded like it should have one. Incidentally, today I realized I haven't pumped any milk in three days. I guess that means I'm done. I'm not worried about running out of milk if Oliver ever switches back. I'll post a pic of our freezer as soon as I can find the charger for my camera.

Tuesday, March 10, 2009

weight gain

As per yesterday's Dr. appointment, Oliver weighs 4.86 kilos (10 # 11 oz). According to his nutritionist at CHoW, that puts Oliver in the 27th percentile for age adjusted weight...and means he gained 27 grams a day over the last 9 days. His weight gain should start to taper now, she says, to 15-22 grams a day.

Such small amounts. Such obsession. Such is our life.

Monday, March 9, 2009

cardiology appointment, the second

Status:

Lungs: still have a little fluid
Heart: a bit large (mostly due to the right ventricle being big)
Truncal valve: mildly leaky, no backwards flow
RA-PV conduit: mildly leaky (the doctor says they all are and Oliver's looks like it should)
Breathing: He still breathes fast and hard.
Heart rate: Is still "above average" and he still has occasional extra heart beats (PACs)
Head shape: Is odd
Drugs: He's on three

Treatment:

Lungs: will clear with time
Heart: muscle of right ventricle will thin with time & Oliver will grow into it
Truncal valve: will need to be replaced at some point (years).
RA-PV conduit: If he doesn't outgrow it within his first year, it will most likely last for years. He was fortunate that he had 2 weeks to grow before his surgery: the surgeons were able to put in a larger conduit which will (hopefully) "fit" for longer.
Breathing: He'll most likely outgrow it
Heart rate: PACs are not a concern. Rate should slow as his heart continues to heal (the cardiologist said it takes a year for the heart muscle to heal entirely)
Head shape: cardiologist said its common and should normalize
Drugs: His doses are the same. He will be allowed to outgrow two (the diuretic and the reflux med). He will stay on captopril until his truncal valve is replaced. It helps prevent blood from flowing backwards.

Reaction:
Whew!!!!

Yesterday was a bad day. Everything seemed gloomy. Today's news (and a good night's sleep for me) made everything seem better.

Sunday, March 8, 2009

plagiocephaly

Like the big word? It means funky shaped head....and Oliver has one. It's flat in the back on the right side and bulges out in the front on the right side. It makes his eyes and cheeks look different sizes. There are many reasons why a baby might have a flat head. Some that apply to Oliver: 1) premature birth = softer skull + long time lying immobile with all that pressure on the back of his head 2) being a boy 3) lying breech in the womb. Apparently, it should resolve within a year, if we're conscientious (sp?) about stretching his neck, making him look to his left and giving him lots of time with no pressure on his head, ie, tummy time and being held upright. Good thing he thinks standing up is a great game.

sleep deprivation

Oliver has been breathing hard and fast the last few weeks. He's also had a stuffy nose. Taken together, these mean that none of us have gotten much sleep. I'm glad we'll go see his cardiologist tomorrow. I hope he will have some ideas about Oliver's breathing...and will give us a better sense of a timeline for Oliver's next surgery. Having some sort of timeline will ease some of our stress.

As a result of my lack of sleep, I've been grumpy and short. Grumpy to my daughter, irritated at Oliver and short with my husband. I've been crying a lot. I feel overwhelmed. Hmmm.....sounds like a new baby's in the house.

Thursday, March 5, 2009

the dude has left the building


we had a little springtime excursion today...well, we actually had two. This morning all four of us went to the grocery store. This afternoon, big sister, Oliver and I ventured out into the mudlicious and puddle wonderful prelude to spring. I think I overdressed him. He was sweating by the time we went inside.

Tuesday, March 3, 2009

normal development

video
Oliver seems to like his Aunt Mary. He had fun talking with her this afternoon. At his two month check-up today, he weighed in at 10.5 pounds. We avoided vaccinations as he's still recovering from his Synagis shot....and because I didn't know he was due for any, so I didn't give him the pre-emptive dose of Tylenol (Yes, I dose my kids for shots). We'll go back to get them sometime next week. On the Synagis front, Oliver has been less congested, more alert, and breathing easier today...right on schedule. I suppose a mild, week-long illness three times over the course of the winter is better than full-blown RSV. I just want him to be perfect.