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)

Wednesday, December 30, 2009

favorite new toy


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

Saturday, December 26, 2009

Sunday, December 20, 2009

the sleep of the just


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.

Monday, December 14, 2009

birthday party


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

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

Friday, December 11, 2009

holding hands

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.

Monday, December 7, 2009

what is this stuff, mom?

video
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!

Sunday, November 29, 2009

mobility

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

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

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.

Thursday, November 26, 2009

gratitude: Y

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

Wednesday, November 25, 2009

gratitude: V, W, & X

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.

Tuesday, November 24, 2009

Saturday, November 21, 2009

Tuesday, November 17, 2009

Friday, November 13, 2009

I like...


...ice cream!

Tuesday, November 10, 2009

for Margaret


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

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.

Friday, November 6, 2009

one year

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.

Saturday, October 31, 2009

Halloween

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!!!

Wednesday, October 28, 2009

eating

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.

Monday, October 26, 2009

latent fear

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.

Sunday, October 25, 2009

walking

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.

Wednesday, October 21, 2009

sleeping


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



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

Monday, October 19, 2009

Wants to walk

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).


video

Friday, October 16, 2009

cranio-facial specialist


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.

Friday, October 9, 2009

nope, nope, no...


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

Tuesday, October 6, 2009

Oliver likes...

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

Tuesday, September 29, 2009

oh yeah,

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.

Monday, September 28, 2009

cardiology appointment, part ???


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.

Saturday, September 26, 2009

Cardiology appointment

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.

Thursday, September 24, 2009

Poem

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

Wednesday, September 23, 2009

Houston, we have a...


...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.

Tuesday, September 22, 2009

Oliver likes...


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.

Thursday, September 17, 2009

9 mo. check up

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

bliss

mobile

video

Friday, September 11, 2009

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




Oliver's recent adventures in eating:

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

Thursday, September 10, 2009

I saw it

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.

Monday, September 7, 2009

so very blessed


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.

Friday, September 4, 2009

new skills

blowing raspberries
standing unassisted for 5-10 seconds at a stretch
crawling up a step
eating french fries
wanting "up"
recognizing popsicles (and demanding a taste, or two or three)

Thursday, September 3, 2009

Oliver loves his papa

While at Oliver's great granma's home in CA, we realized he likes me (his dad). His mother was playing with him on the floor. I walked by, not stopping, and went into an adjoining room. He watched me as I went, doing his excited wiggle dance when he saw me. When I just walked by and went away, he started crying (could maybe even call it an offended howl). He wanted me--makes me feel special. I don't think his sister ever did that. My wife thinks it's the beginning of separation anxiety!

Wednesday, September 2, 2009

oranges



For a while now, Oliver had enjoyed playing hold the ball, eat the ball, drop the ball, chase the ball, pick the ball up, repeat. Apparently, clementines work as well as balls and taste a whole lot better.

milestones

In the past two weeks, Oliver has:

-taken his first flight.
-taken his first steps.
-met all three of his living great grandparents.
-determined that he really wants to eat whatever we're eating.
-fallen more in love with big sister. Now, he tries to chase her.

eating a vanilla See's lollypop on the plane ride home

Monday, August 24, 2009

passe

"Sitting up is so yesterday," says Oliver. Now when we go to get him after a nap, we frequently find him standing up and yawlping. He's also mastered the art of crawling: no more one-leg-drag-and-scoot. He now just puts his head down and goes.

Thursday, August 20, 2009

wild man

video

The kids and I visited the clinics at the Children's hospital today. No, Oliver didn't have any appointments. We were just taking some birthday brownies to a friend. Oliver had a BLAST. I think everyone in a two-mile radius could tell how much he enjoyed our wait. He shrieked while standing, he shrieked at the other kids in the waiting room, he just shrieked and shrieked and shrieked. He's now sleeping.

Tuesday, August 18, 2009

two teeth and two feet


This is Oliver's frequent expression, particularly around big sister. Notice, in his hand he has our phone. It turns out that Oliver can crawl, he just hadn't had the proper motivation before. Today, he crawled six inches to get the phone (its all those buttons, I tell you). Later tonight, he crawled into the bathroom when papa turned on the faucet. He covered over two feet in his pursuit of some nak d splashing time.

tuesday night boogie

video

Monday, August 17, 2009

physical therapy

Papa took Oliver to his second (and, it turns out, final) physical therapy appointment today. Between the time we visited Milwaukee for Oliver's developmental check up and Oliver's visits to the local therapists (the first was last Monday), his torticollis resolved on its own. Now, he uses both hands together, doesn't prefer his right side and no longer tilts his head to the left. [Keep in mind that his preferences were never severe]

Next up: crawling, and he's finally started working on it. He actually made some successful attempts at my aunt's house on Saturday.

"What's in a name?"

asked Shakespeare's Juliet. "That which we call a rose/ By any other name would smell as sweet."

A few days ago, my brother made an off-hand comment about the little lover's name, and I started thinking.
I remembered the Olivers I thought of before we named him: Oliver "Daddy" Warbucks and Oliver Twist.
I thought about why I liked the name: it sounds like "our little lover," if you say it really fast.
I thought about why Kevin liked the name: It gave Oliver the initials "O.K." and turned our family acronym into one big (J.O.K.E.)
Once, in the hospital, Kevin joked that if I wrote a book about our experience, I would have to title a chapter "The Boy Who Lived" as a tribute to Harry Potter.
It struck me, after my brother's comment, that the name Oliver also contains life, right in the middle: O-live-r. And, he did.

I love you, my little man.

green beans

Sunday, August 16, 2009

little hearts in the news

I stole this link from my friend, Nancy's blog. It's an article about heart surgery in young children.

Thursday, August 13, 2009

swing

video

A few more pushes and he fell fast asleep

tomatoes

Tuesday, August 11, 2009

Heart Valves

I ran across this article in the library a few days after I read that Oliver's final roommate's big brother will need heart surgery this year. Inserting a new valve via stent will not be possible for our boys yet, but maybe someday.... Anything to minimize the scope of their surgeries.

Monday, August 10, 2009

Friday, August 7, 2009

cranio-facial specialist


Yesterday, Oliver was seen at the cranio-facial clinic in our hometown. I was assured that his flat spot is minimal, is not due to his skull bones fusing together early, and, most likely, will self correct in the next few months. Oliver and big sister both seemed to like riding in the hospital wagon. We made a day of it and ate at the hospital cafe, complete with soda and frozen yogurt for big sister and a few bites of egg salad sandwich for little brother.

Thursday, August 6, 2009

little buddy

passed away at 4:20 today.

a little math

I just looked back at our medical records and learned these tidbits:

Oliver's delivery cost $5,000
My ambulance ride cost $1700
Each of my 3 local pre-natal imaging visits cost between $1500 &$2000
Our orientation and testing at Milwaukee ran closer to $4000
My stay at the local hospital: $14,200

That's an even $30,000

Of course, these are all the amounts charged by the hospital. Our insurance paid considerably less.

Wednesday, August 5, 2009

little buddy

Oliver's little buddy isn't doing so well. He had only a short reprieve after his "miraculous" recovery. His family is still waiting with him for his new heart.

Saturday, August 1, 2009

adventures in eating


click on the image to see the end result of one Joe-Joe and one piece of fruit leather. He sucked and nibbled and chomped happily until he fell asleep.

Sunday, July 26, 2009

peaches=yummy!

another milestone

Friday, Oliver was sad, very sad, so sad that I gave him Tylenol. Yesterday, on our family road trip, I looked in his mouth. I'm glad I gave him the Tylenol because his bottom right front tooth had broken through. I'd take a picture, but I don't think my camera can focus that close up.

Wednesday, July 22, 2009

Developmental Follow-Up


Papa took Oliver back to Milwaukee yesterday to have his development assessed.

He's still 27", 15 # and has a 17.5" head.
He tests on or about 6-7 months for his cognitive, fine motor, gross motor, and expressive language (talking) skills. He tests at 5 months for his receptive language (understanding) skills because we're not sure he recognizes his name. Of course, it might help if we consistently called him by his name instead of the panoply of nicknames he's used to hearing.

They acknowledged that he has a mildly odd-shaped head and suggested we take him to see a head doctor (cranial-facial surgeon). The doc will measure the little lover's head and determine whether and how to re-shape the kid's noggin.

The developmental team also concluded that Oliver is super tense and favors his right side. He scrunches up his shoulders and keeps his head cocked to the left and turned to the right. Now, we also get to visit a physical therapist.

We're also supposed to encourage Oliver to sit back and relax instead of sitting up straight. We tried yesterday, honestly we did. He was having none of it. He wants to be up and going. He does not want to relax. He wants to chase his toys and explore the house. Hopefully the physical therapist will be able to help him overcome his right side preference....although I think it just might take evening out his head shape to get him to balance his head properly.

standing up


No, dad's not helping out.

pulling up

video

Monday, July 20, 2009

there must have been a miracle

Oliver's little buddy who has struggled so much went in for surgery today. The doctors planned to do the second of the three operations required to fix his heart before attaching the mechanical heart (I think its called a Burlington heart). After they completed the Glen, the baby's heart rate dropped to normal. All of his vital stats normalized. Said the doctor to baby boy's parents, "There must have been a miracle back there." "Yes," I agreed when I talked to his mom a few minutes ago, "and, soon, you will get to rock that miracle to sleep."

I almost wish I were going to Milwaukee with Kevin and Oliver tomorrow, so I could give little buddy's mama a hug.

Thursday, July 16, 2009

milky, milky

Kevin sent off the third and final shipment today. Grandtotal: 117# of milk sent to the Mother's Milk Bank. Not bad, if I do say so myself.

Let's see, I collected the milk over a 2.5 month period. So, by extension, I would have produced 560# of milk over the course of a year. In comparison, 1904's world-record-holding COW produced 620# of milk in just 7 days. As far as I can tell, the current record holder produced 75,275# during calendar year 1998.

Wednesday, July 15, 2009

little buddy

One of Oliver's little buddies is not doing weel. He's at the top of the transplant list, but his mom says the doctors are talking about putting him on a heart machine to stabilize him.

He's already completely sedated. Even in that state, his mom says his heart starts racing and his blood pressure shoots up if anyone talks to him or touches him. He can no longer even tolerate a gentle head rub, which he used to enjoy.

I've been holding Oliver more lately.

cardiology appointment, part ???

Monday, Papa took Oliver to his cardiology appointment. Here's the update:

Meds:
diuretic down to once a day.
heart medicine still 3x daily.
antacid still 2x daily.
Growth:
6.9 kilos (15 # 3 oz)
68 cm (27")
Heart:
Echocardiogram looked better than last time.
Lungs:
X-ray scheduled for his next visit.
Next appointment:
September

Wednesday, July 8, 2009

second shipment

Tuesday I sent another 55 # of milk off to Colorado. The milk bank pays for shipping. Out of curiosity, I asked how much shipping cost. Without an account, sending a 37# box overnight costs around $150.00. I'm glad the milk bank pays the shipping, but I would have paid just so I didn't have to face the task of thawing and disposing of all of that milk!

Saturday, July 4, 2009

bad night

This evening, I lay down with Oliver in our bed as he fell asleep. Then, I watched him sleep and I cried. I feel so frustrated that I cannot protect my son. I will never be able to tell him, "I won't ever let anyone hurt you," because, in all honesty, I already have and I will do it again. I will hand him back over to the surgeons who saved his life once in the hopes that they can do it again, when the time comes. But, oh the pain for him. And he's such a sweet little baby-so soft and gentle.

Friday, July 3, 2009

Oliver may no longer...

...sleep on our bed. Tonight, I put him down before he fell asleep. He rolled back and forth and back and forth and then over and over and almost off. The little stink-pot.

He's also started pulling his little legs up underneath himself while he's on his belly. I sure hope he figures out how to crawl soon. It is clear he wants to explore. His whole body will strain towards an object that's just out of reach. He'll whine and cough until someone helps him get the object in question, mostly cough. Big sister got the same way before she figured out how to locomote. As soon as she figured out how to get around, the crying got a LOT less frequent.

Wednesday, July 1, 2009

Oliver likes...


...these Teddy Bears.

(recognize the seat, Aunt Jane? Big sister liked this seat, but Oliver LOVES it.)

Wednesday, June 24, 2009

first shipment


32 # of frozen milky, milky shipped via overnight express to the Mother's Milk Bank in CO. I wish there were a closer facility, but at least I don't have to thaw and dispose of all the deep frozen milk in our garage.

Joy

At times I feel overwhelmed by guilt and depression. A heaviness settles over my body and every action seems to require nearly insurmountable amounts of energy. This morning has been one of those times.

I want to feel peppy, to have ideas of fun things to do with my kids. I lay in bed last night trying to come up with some. The juices just weren't flowing. And so, this morning I slept an extra two hours.

Sitting in my office, staring at yet another friendly rejection (I write for money as well as pleasure), I thought about how much of life is a choice...and how little those choices sometimes seem to matter.

Before sitting down to work, I read this article about finding joy. I do choose, every morning, to get up, to make my bed, to put on my clothes, to work or to play, and yet I still find myself occasionally beset with this heaviness, this inescapable lethargy.

All I can do, every day, is choose joy. Most days the decision is effortless. Today, I feel like I'm trying to swim through Jell-O!!!

Of course, anything is better with some colorful, wiggly desert. Maybe we'll make some jigglers today....ooo, ooooh, I know we can make a stained glass pie. I've never before done that with big sister. I feel a little lighter already.

Tuesday, June 23, 2009

Monday, June 22, 2009

of all things, Oliver likes...

...lentil stew, the spicy kind I make from scratch. Go figure, the kid won't eat rice cereal, but he'll eat stew dripping with ground red pepper. That's my boy!

Sunday, June 21, 2009

6 mo check up

Oliver now tops the scales at 6.6 kilos (14# 8 oz) and stretches out to 25" (63.5 cm). Which puts him a little on the lean side, but, hey, check out his dad!!!!

The pediatrician said he looks good, but advised us to keep trying with the solids. I feel a bit discouraged about that as he rejects the baby cereal outright. My friend Michelle (Little Miss E's mom) reminded me last night that I don't have to feed him cereal. Duh!!! I can feed him whatever he wants...like crackers, which he tried for the first time tonight, and loved. Big sister never really got into the mushy baby foods either.

Oliver also has the worst breath. It doesn't look like he has thrush. I keep checking and the doctor checked on Friday, too. Maybe its his fancy, schmancy formula (the most expensive formula in the store, by the way. $ 26.49 USD per 16 oz can of unmixed formula. That's twice as much as the regular stuff). I dunno, but it stinks!!!!

Oliver's little buddy





Little Miss E. came to visit last night. What a special treat to see her looking so good!!!