A Broken Heart

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)
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)
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)

Saturday, February 28, 2009

sleeping arrangements

holter monitor

Been there, done that, got the picture!

Friday, February 27, 2009

cardiology appointment, the first

Today, I took Oliver to visit the cardiology clinic in Madison. He had an echocardiogram and a fairly thorough exam. He also stayed awake the entire time (11 am - 12:30 pm). He was TIRED by the end of it. He slept for the next four hours (well, he did wake up enough to eat, then fell back asleep).

The doctors in Madison only sedate children for echos if its absolutely necessary.
Oliver hit 10 pounds today--That's up ten ounces from Monday.
His heart seems to be functioning the same as it was when we left the hospital.

His breathing has become more labored over the past few days. It did that last month right after he got his Synagis shot....so, I'm guessing that's the culprit this time as well. If not, well, that would be poopy.
I think I'd begun to recover from the stress of Milwaukee. Visiting the hospital here brought it all flooding back.

Of note:
He's currently wearing a Holter monitor so the docs here can get a sense of his wacky rhythm.
He pooped in the bathtub this morning.

Wednesday, February 25, 2009

we're really home

7 loads of laundry
2 cycles of the dishwasher
5 medical appointments made
1 medical appointment kept

We've arrived....

(I still haven't returned any phone calls...sorry!)

Tuesday, February 24, 2009

party in da house

"It says: I love you. I love you."

before he even got in the door

driving off into the sunset

one last hurrah!
the long goodbye!
like a bat out of.....
getting out of Dodge.

We literally did drive off into the sunset. We left the hospital at 5:15 pm and arrived home at 6:45 pm.

I read it and wept

(second box from the bottom)

Saturday, February 21, 2009

magic bullet

Oh, little red nipple, how I love you!
So, Oliver's next door neighbor, Ellie, has also been working on feedings. Her next door neighbors gave Ellie one of these Similac Premature Nipple & Ring nipple. This morning, Ellie's dad said Ellie took her whole feed with no trouble when he used this nipple. He gave me one. At 2 pm, Oliver ate his WHOLE FEED!!!!!! And, what's more, he ate it in less than 10 minutes. I had to ask the nurse to bring me more formula becuase he downed the 50 cc's I brought in! I think maybe I should use some more exclamation points!!!!!!!!!!!!. Imagine me jumping up and down in excitement. Imagine cold tingles running all over my body becuase I am so happy.
Anyone want to guess what I'm about to buy? Hint, hint: it's red! :) :) :)

other notes on feeding

at noon, Oliver's nurse gave him 50% Alimentum and 50% breast milk. He got mad at it. He fought it. He wouldn't drink it. The rash on his chest got more pronounced. I think the GI docs might have gotten the milk allergy right.

The last time the nurses dropped an NG tube into Oliver, he got a rash all aroudn the tegaderm they used to hold it in place. He's also started getting raised bumps on his forehead, the back of his head and most recently, under the leads stuck to his chest. At first I thought it was a reaction to tegaderm. I thougth the ones on his head were just baby pimples. I thought the ones on his chest were a reaction to his leads. BUT....he hasn't ever reacted to tegaderm before, or his leads. And, no son of mine would dare have acne (ask Kevin why the next time you see him)!

Earlier today, Oliver's nurse looked up milk allergies. As we read through the symptoms, we thought the GI docs were nuttters. Oliver's only symptom seemed to be the bloody stools. Well, now I've recognized the rash and I can attribute his fussiness (which we thougth was just frustration at the eating process) to the allergy as well.

Life is indeed good some days. We must have reached a critical mass of people praying for us or something.

feeding and growth

day 1: 402 mL (I lied, it wasn't 400 even)
day 2: 356 mL (If I count the 6 am feed for day 3) +25 grams
day 3: 373 mL +10 grams
day 4: 320 mL (his heart rhythm day) +45 grams

If he doesn't eat well today, he gets his NG tube back. I'm hoping yesterday's low feed was due to discomfort with his funky heart beats. I'm also hoping his new formula doesn't throw him off. I'm also experimenting with a faster flowing nipple.

some problems, some solutions

problem: bloody poop
suspected reason: milk allergy (not lactose intolerance)
solution: special formula
resolution: no blood since midnight
long term: we can challenge him with cow's milk-based forumla around 6 months, or even, gasp, breast milk. Dr. Werlin (GI) says most babies outrow milk allergies by 6 mo-1 year.

problem: cold, clammy and pale
suspected reason: heart arrhythmias
solution: wait them out
resolution: he's himself this morning

problem: funky atrial contractions (PACs) blocking normal heart contractions
suspected reason: hmm.... heart is on a learning curve since surgery
solution: wait them out
resolution: still having PACs but no bradycardic (slow heart beat) episodes since 3 pm yesterday.
long term: He should outgrow this, according to Dr. Saudek (Cardiology).

problem: we're tired
suspected reason: duh! we've been split between Madison and Milwaukee for nearly 4 months.
solution: Oliver eats well and continues to gain weight so we can go home soon OR Oliver gets transferred to Madison
resolution: TBD

problem: not eating enough
suspected reasons: 1) breathing too fast 2) too weak 3) doesn't like the food 4) heart beating funny 5) doesn't tolerate the propranolol 6) allergic 7) gets tired out
solutions: 1) increased captopril 2 wks ago, grow 2) practice 3) switch the food 4) wait 5) discontinue the propranolol 6) switch the food 7) switch nipples
resolution: 1) fixed 2) fixed 3) fixed 4) fixed 5) fixed 6) fixed 7) TBD

Friday, February 20, 2009



translation: I love you, Oliver

big sister found the camera

what you don't want to see...

The little lover had another bout of mystery heart rhythms around 10 and then again after his 11:30 feed. They seem to only happen when he sleeps. He's been sleepier than usual since around noon today. Hmmm..... No one seems overly concerned. The cardiologist who came in said the team would talk tomorrow and maybe restart the propranolol. She also said we probably bought ourselves another day in house....which makes me more comfortable. The whole thing still freaks me out.

running total: 278

Thursday, February 19, 2009

tummy time

We played a bit today, again. Oliver seemed to dig the view from his belly.

sleep on two fronts

What's wrong with this picture?

I changed Oliver's diaper and then fed him. His back felt lumpy, but I couldn't figure out why. Then, I realized I'd left the dirty diaper underneath him when I put his jumper back on. But wait, it gets better. Not only was his dirty diaper sitting behind him, I had used one of the sticky tabs from the dirty diaper to "close" the clean diaper.
In other news, he has had progressively less blood in his stool as of noon today. Let's hope it completely disappears over night.
Late this afternoon, he had some arrhythmias (PACs) and . It freaked me out when his heart rate dipped down and I'm still trying to get the doctors and nurses to convince me that its really nothing to worry about.
He has also seemed more drowsy than usual today. I hope he makes his goal for eating
5:30 -48
8:30 -37
running total: 240
Can you tell I've started worrying more?


12:45 - 30
3:00 - 31

running total: 155

discharge goal: >350 mL today and weight gain.

To help with calories, Oliver gets 1 mL of vegetable oil 4 times a day. I gave it to him with a syringe this morning and he didn't seem to mind. Let's pray the oil helps him gain weight even though he's tired.

I'm also concerned about his digestive system. He is having some ongoing trouble in that department. Maybe he has internal hemmoroids....That I could deal with.

seventh inning stretch

12-38 (nurse fed)
3-28 (nurse fed)
6-34 (nurse fed)

total for yesterday: 391

8:30-55 (Angie, the speech/feeding lady fed--he didn't get as frustrated as yesterday)
10:30-39 (he didn't get frustrated at all)

running total: 94

technically, the 6 am feed should count in today's total. But, had the nurse started the feed 10 minutes earlier...or even 5...it would have gone in the 5 am column and counted. So, the cardiology folks said they'd count it for yesterday.

AND he gained an infinitesimal amount of weight. I think its either 15 or 35 grams. I don't care. All I care is that he gained weight.

Wednesday, February 18, 2009

to bed...

feeding update:

running total: 292 (60 more than at the same time last night)

I'm going to try to sleep and hope he will eat for his nurse!

incidentally, I found my phone. It was in my pumping bag in Oliver's room.

eating update

8-34 (his nurse fed him)
2:30-33 with the oil -- he hated it, spit it out, fussed, got all mad and sweaty.
4:30-34 didn't seem very interested.

running total: 206

AND...he doesn't like the oil they've begun adding to his food to up the calories. He spits the oily milk out.

AND...there's some suspicion that he may have a UTI.

the problem with sleep...

My family anticipted this. Well, maybe they didn't anticipate this precisely, but they know how "well" I function on no sleep. So, I can't find the cell phone. There's one last spot that I'll check when I get back to Oliver's room. But, I can't even remember when I last used it. Was it late last night? This afternoon? I have vague memories of both, but Kevin claims I haven't called him at all today.

for Lalee

Oliver getting ready to eat...

He really likes the hospital's mobile. He can't wait to see the one you picked out for him to watch at home.

day 2: no NG

Yesterday's total: 400 - even
Today's goal (I made it up): 450

8 - 34 (nurse fed)
10 - 60
12:15 - 45
running total: 139 mL

This week's goal (doctor made it up): eat well for three days in a row (well = 400 +) and gain weight one day. Yesterday he lost 50 grams (no surprise as he got 160 fewer ounces than he usually gets).

5:45 am


to bed for mama.

Tuesday, February 17, 2009

NG out again today

1:30 -15
3:30 - 30
5:30 - 34
7:20 - 50
running total: 214

After the 3:30 feed they decided to put his feeding tube back in as he wasn't up to half of the minimum volume he needs...but, I kept asking and the doc on call for the night said we could leave it out (there you go, dad, persistence does pay off...I just had to wait for a shift change). His maintenance goal is 400. He has till 6 am to make it. I think I'm spending the night. I'll nap tomorrow morning...maybe. But, I do love my sleep.

At his noon feed, something seemed to click. He ate, fussed, ate, fussed, and then settled in to contentedly polish off the bottle. He glurped, slurped, gagged, and spewed the 5:30 feed. On my way back to the hospital after dinner, I stopped to say a special feeding prayer and at 7:20 he ate himself to sleep. I had to ask the nurse to bring in more milk.

I caught him...

...and now you too can hear him coo! Tonight, after he ate, we went to the playroom for some tummy time and hold-up-your-head-on-your-own time. I got some of the biggest social smiles ever. I'll have to capture those next.

Saturday, February 14, 2009


Yesterday marked 100 days since my admission as an inpatient at Meriter Hospital AND 60 days since Oliver's birth. We thought about celebrating...but instead, big sister got an ear infection on the 12th and no one slept! The 13th (Friday, incidentally) was consumed with doctor's appointments and l-o-n-g naps.

update on Ollie

I came into Turnip's room this morning and thought, he looks good. It took me a minute to realize that his ng tube was out. I guess he pulled it out early this morning and they decided to leave it out. He took 60cc at 8 (a record), 45cc at 11, and 38 cc at 2. This means that they might let him go one more feed before sticking the tube back in--we'll see how he does.

Here are a couple of pics and a video of him tube-free.

Friday, February 13, 2009


Wedensday total by mouth: 199 ml
Thursday total by mouth: 149 ml
Notice a trend?

Wednesday's X-ray was better than ever, so Oliver now gets some breastmilk through his NG tube as well as breastmilk in his bottle.

Big sister was up all night last night crying with an ear infection. All night = from midnight until 7 am, when she stopped crying and started playing. I wanted to ask her pediatrician for some of the good drugs Oliver has been on...say fentanyl...just to make the pain go away. Tylenol did zero for her.

Thursday, February 12, 2009


Oliver's little buddy, Ellie, is having her second open-heart surgery right now. She had her first surgery the same week Oliver did. She will require a total of three surgeries to fix her broken heart.

I'm not writing to say I'm glad its not Oliver. Someday soon, it will be Oliver. I want, and my want is so big it almost consumes me. I want Ellie to come through her surgery with flying colors. I want her to recover smoothly. I want her to go home with her family. I want to see it happen again, for someone else, since its not happening for us. I want Oliver's long recovery to be the exception.

Wednesday, February 11, 2009

kid swap

This evening, I drove home and kissed Kevin before he drove back to Milwaukee. I'll spend the weekend here. He'll spend the weekend there. Each kid gets a parent.

Oliver had a good day, yesterday. He consistently downed just about an ounce of fortified breastmilk at every feed...for a grand total of 220 ml from the bottle. His nurse carried him around all day as I was at home getting my 6 week check up and an eye exam (to replace the two pairs of glasses that have broken in the past month). He had neither violent vomiting nor SVTs, so the docs have not replaced the propranolol with another drug. However, if he has more fast heartbeats, they'll start him on digoxin. Today, he seemed content overall. He ate, slept, and occasionally made goo-goo eyes at me. I think he's trying to win me over. Little does he know! My hormones already took care of that for him.

Today, he seemed to be breathing more slowly (this is good) and his blood pressure was lower (not necessarily good, but a side effect of the drugs he's on to slow down his breathing). So, the increase in captopril seems to have worked. He's also continued to take nearly an ounce at every feeding. He eats until he falls asleep, as opposed to eating until he decides the food tastes horrible, and then gagging, pushing the nipple out of his mouth, and spitting out any milk that happens to dribble in (his previous modus operandi).

Tomorrow morning, he gets a chest X-ray to see if he's leaking again. If he is, he has to go back to the nasty formula. If he isn't, then his cardiology fellow said she'd increase the amount of breast milk. Currently, whatever he doesn't drink from his bottle is pumped into his stomach. Instead of breast milk, the stuff pumped into his stomach is nasty formula. If his X-ray looks clear, the doc said they will start pumping some breast milk into his stomach. (Pleasant details, no?)

Tuesday, February 10, 2009


Still waiting....

Today, Oliver switched to fortified breast milk in his bottle and formula through his nose tube. I pray that he doesn't start leaking again.

Today, the cardiology folks at home said they'd be willing to have him come to the hospital there...if everything checks out with the docs in Milwaukee. I wouldn't want to start any transfer process until Monday, however, just in case Oliver does start leaking again.

Today, Oliver got taken off of the propranolol-->because he had gotten super fussy, gassy, and begun projectile vomiting. We'll see if those problems resolve. From what I could tell this evening, he looked more comfortable.

As of today, Oliver has begun to be able to eat while sleeping (or at least with his eyes closed), keeps suction on the bottle even when he's not actively eating, and goes to town when I let him suck my little finger. He had more moderate feeds in a row today than he has in a while.

lovin' the brother, adoring the sis'

Sunday, February 8, 2009

email from big sister

dgt hk8ikljfjtihr69y6okbgkjitjgijgorptio54t5yio96y0o50ogoikmkjnhytt6tttgmml;',

"I love you mama. Mama, I love you. I hope you have a great time. Please,
give Oliver a hug for me. Help the nurses and doctors take really good care of
him. And help Oliver get better soon. Amen. ... I said a prayer for Oliver
and mama."

good news

Today, when I got to Oliver's room, I said to his nurse, "Give me some good news."

And...she did!

When the doctors rounded on Oliver this morning, they decided to try a new feeding tactic. As Oliver has not been increasing the amount he takes from a bottle AND he has gotten adequate calories for the past two weeks, the docs are going to yank his NG tube tomorrow and let him get hungry. Dr. Pelech thinks he'll take the nasty combination of Pregestimil and Portagen (his formulas) if he gets hungry enough. Dr. Kovac, who saw Oliver when he had his chylous effusion, really fought against giving him breast milk again. He wants to give the chylothorax time to heal before challenging it with my high-fat milk. I'm chill with that, cause I'd hate to have Oliver need a chest tube again.

They're also going to mess around with his dose of captopril (it reduces the work his heart does) to try to lower his breathing rate. They think this will work becuase he still has a moderate AI, i.e., one valve in his heart is still a little leaky.

Saturday, February 7, 2009

holding pattern

Oliver progressed in his feedings yesterday, but seems to have moved backwards thus far today. This is one of those days where I think the thoughts parents in inspirational movies never think.

a new day

I haven't been keeping track of normal baby milestones. Oliver has been smiling for two weeks now. He smiles mostly in his sleep, right after he takes his (small) bottle. Also, within the past four days he's begun making true baby coos--not just soft, breathy cries--actual happy sounds. He loves watching my face. He can hold his head up on his own for short stretches of time. He can also lift and turn in if he's up at my chest (He does that in stages). If he gets mad, he arches his back. He can lift himself into an almost vertical position, if he's lying slouched against my chest. He also makes these cute little drama-king coughs when he wants attention or doesn't like something.

Not so normal milestones: he pulled his NG tube out again last night and his chest X-ray looks a bit better today than it did two days ago. Uh oh, he's mad about something. I think I'll go pick him up.

Friday, February 6, 2009

three months: mom's status

I went into the hospital on Nov 6. Congratulate me!

I cried for half of the drive home this morning. Not big sobs, just a steady flow of tears. I didn't want Evelyn to catch on.

Although a quarter year has passed, it hasn't gotten easier. I have gotten used to the Ronald McDonald House, but it doesn't feel like home. The beeping of hospital monitors still makes me cringe. I can't seem to remember anything that happened more than 24 hours previously. I struggle to plan more than 24 hours in advance. I have no appetite. I haven't read anything more taxing than email since Oliver's birth.

The upside: I'm mastering the Zen art of living in the moment. I'm mastering the yogic art of blocking out everything but my breath: in -- out -- in -- out. I've learned to cry in front of other people. I'm homing in on my pre-pregnancy weight. I pray a lot.

Today, Evelyn and I went grocery shopping in ten minutes, flat. Usually, I make a menu for the week, write a grocery list and methodically check prices and ingredients at the store I like. Today, we drove to the closest store, and ran, literally, through the produce section picking anything that looked good: asparagus, oranges, blueberries, bananas. Then, we charged up and down the aisles: pre-made Thai food, bread, raisin bread, milk, juice, frozen veggies, frozen french fries, frozen chicken tenders, frozen pizza. Then we checked out. We forgot the peanut butter. We forgot my conditioner. (Peanut butter is a big deal in our family. We eat it at breakfast, lunch and dinner. We have three jars in Milwaukee).

But, I did buy flowers. I told Evelyn they were for her and papa, that she could think of her beautiful mama when she saw the beautiful flowers. Evelyn picked out vases and helped me arrange the flowers. She wanted the orange Gerbera daisy in her room. "Then, when I have a bad dream and I wake up, I can look at it and think about you," she said. I didn't cry on my way back to Milwaukee.


Today, my husband, daughter and I all drove back home. I got my teeth cleaned, then drove back for a three day solo stint. I'm debating whether or not I should just spend the entire three days in Oliver's room. I'm frustrated that he hasn't begun eating more. I want to get him home. Maybe if I just held him for three days straight, he'd do it. Then again, maybe I'd just get tired and crabby.

When I checked my phone on the way back to Milwaukee, there was a message from one of Oliver's care givers. Apparently, today, his heart started beating too fast (Supraventricular Tachycardia or SVT). Then, it would slow back down. Then it would speed up again, to over 200 beats per minute. He's usually around 140 beats per minute, which is normal for a baby. The docs put him on a new medication (propranolol) to keep things slow and even.

By the time I got back to Milwaukee, he was just fine, although, he had pulled his nose (NG) tube out. I actually felt a bit proud. I've listened to other moms at the Ronald McDonald House talk about their babies pulling out tubes. I've wondered if Oliver had any spunk at all or if, as I strongly suspected, he was just a completely mellow little lover. I guess our mellow guy has a bit of the devil in him after all.

Acccording to the nurse, the fast heart beat didn't have any real trigger and it might happen again. It happens most commonly just after surgery. Eventually, the docs will wean him off the medication to see how he does.

This kid, I tell you!

Wednesday, February 4, 2009

a good day

Oliver looked at ease today, something he hasn't looked for a while. He's still not eating much and he's still a bit congested, but he once again has blood fully saturated with oxygen and he occasionally breathes at a "normal" baby rate. He fell asleep in my arms and stayed asleep as I picked all of the gunk out from between his fingers and the insides of his fists. I was not super gentle, so he had to have been really relaxed.

sibling stress, II

I think we're through the most severe stress reaction. At least, I hope so. Two nights ago, big sister had a major melt-down: screaming, sobbing, hitting me, kicking me and pulling hair (mine). We never went through the terrible twos, so this was the second tantrum of her life as far as I know. I carried her to our room, held her and told her I loved her. After she calmed down, I told her she could kick me and hit me and pull my hair, and I would still love her. However, I told her that it hurt me and made me feel sad when she did it. She hugged me and kissed me and said she was sorry.

Yesterday, after papa went back home, she had a second melt-down. More screaming, sobbing, wiggling away from me, and, this time, biting. We had to train her to bite gently when she was younger. Her father and I both nibble her when we play: she was a little over-enthusiastic when she first began nibbling us back. However, I don't recall her ever before biting in anger. The first bite took me by surprise. I stopped walking and told her to stop when she started in on chomp number two. I was so upset that I left the room for a few minutes after I plopped her down on her bed. When I went back, I sat down next to her. A few minutes later, she calmed down, said she was sorry, and gave me a big hug and a kiss.

After that, we had a very enjoyable day. She spent three hours in little brother's room and cooperated very well. She was exhausted by the end of the day.

This afternoon, Kevin left for home again. After I put Evelyn in bed, I got ready to take a shower. Just before I got in, I peeked at her...but she wasn't there. I frantically began calling her name, pulling on clothes and looking for the room key. I found her in the kitchen/dining area chatting with the ladies who brought in dinner tonight. She said she was scared and didn't see the light in the bathroom so she went to find me. I'm not sure I believe her. Maybe she didn't know I was there. But, I did tell her I would go to the kitchen after I took my shower and that she could come find me if she needed me.

Now, she's sleeping peacefully. I waited till she was out cold to take my shower. I'm glad we didn't have any more tantrums today.

Monday, February 2, 2009

convince me

Today, while I sat curled up with Oliver, his surgeon came by.

"How are you?" he asked.

I told him. I told him we were frustrated. I told him we wanted to go home. I asked him why Oliver was taking so long to get better. I asked if Oliver could be transferred to another hospital, closer to home. I told him my daughter screams when I leave the room, not the house, the room. I told him our family was falling apart.

He talked with me for a while, then left.

Twenty minutes later he came back. "There is nothing in Oliver's echo. that would explain why he's having trouble now," he said. "But he is making progress. He was taking 50 ccs of formula and now he's up to 200. I don't think we want to talk about a G-tube while he's still making progress."

"And," he added, "Oliver's slow progress is not unexpected given his course so far. He didn't start eating until day 20. He spent a week with his chest open. He had a long time in the ICU. He might be here for another few weeks. But, I don't think there's any cause to worry."

I just looked at him. "Say that again," I said.

He looked confused.

"Say it again," I said. "The last part."

"I don't think there's any cause to worry."

He's suggesting that Oliver be switched back to breast milk and has asked the PAs from the Herma Center to put us in contact with other families who are or have struggled with the stress of a prolonged hospitalization. He said that at this point, it's more art than science, especially with the feeding issues. Altough I've been told Oliver will need to be on his Pregestimil and Portagen formulas for anywhere from 4-8 weeks, the surgeon said "We just don't know what will work best."

I was so relieved to hear him say he didn't know. I'm tired of getting different answers from different people. He also said that they don't like to transfer babies, becuase, not infrequently, while the babies are in the hospital for purely feeding issues, they develop another cardiac issue.

a trip to Milwaukee

Evelyn and I drove to Milwaukee yesterday afternoon. She was excited to see her baby brother this morning. She got to hold him AND she helped feed him his bottle. As you can see, no more gowns. He's tested negative for the past four days. We're still wearing masks because, well, it's winter in Wisconson. If we don't have a cold now, we're working on it!

PS-Isn't my husband handsome.