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)

Friday, October 31, 2008

potential names-Dec 31

So, we still haven't settled on a name for Turnip. We have names selected for the 24th and 25th of December. For a number of reasons, I'm really, really hoping he'll last until the 31st. If he does, he'll land on the birthday my dad and I share. I'd like to give him some sort of name that would reflect this shared birthday. Kevin and I have come up with three names that might work. I've put a poll on the blog so you can vote for the one you like best--look in the left-hand column.

James Wilson (my dad's mom's older brother)
Thomas Paul (my dad's grandpa + Kevin's grandpa are both Thomas. Paul=Kevin's other grandpa and a mentor for whom I have a great deal of respect)
Ian Roosevelt (Kevin likes Ian and Roosevelt is my dad's middle name)

I've already got a favorite.

Thursday, October 30, 2008

promised photos



Can you see the family resemblance?

Wednesday, October 29, 2008

logistics

So, I've realized that I may not see much of Turnip during his first month of life.

I will labor and deliver on the 6th floor of the hospital.
If Turnip is distressed at birth, the NICU team will take him away immediately...to the 4th floor. I won't get to see him, touch him, or hold him.
In any case, he will have wires inserted through his belly button into his heart immediately upon birth. They will measure his atrial and ventricular blood pressure. He will not be allowed to eat until after his surgery and partial recovery--so he will also have an IV to give him nutrition until then. Due to his wired status , he will need to stay in the NICU prior to surgery and in the PICU after surgery. There are no beds for parents in the NICU. I didn't get to see the PICU.
I will recover on the 7th floor for 2-4 days and then be discharged.
Turnip will be in the hospital for 3-4 weeks.

After giving birth to my daughter, I was not mobile and I had NO energy. I don't know how I will manage the trip between the recovery room and Turnip's room...even if I ride in a wheel chair. After I'm discharged, seeing Turnip will require a car ride, a long walk, and an elevator ride. I don't know how that will work. By the time I get to his room, I will need to lie down and take a nap...but there are no beds and the rooms (at least in the NICU) are more like cubby holes, with no extra space.

timeline

As per our visit with the folks in Milwaukee:

Turnip is scheduled to be born on Dec 31.
He will have surgery between 2 days and 1 week of age.
He will stay in the hospital between 2 and 3 weeks for post-op recovery.

Which, taken all together, means a 3-4 week hospital stay...if nothing goes wrong.

There is a good chance that he will be taken as early as Dec 15 by C-section due to complications on my end.

Monday, October 27, 2008

Saturday




Saturday, the husband and the daughter set up Turnip's crib. I bought the mattress and sheets a few weeks ago--acknowledgments that Turnip will be a baby, not just a heart defect.

Hating every minute

A friend who also has a baby with this condition wrote: "I want to reiterate the fact that everything you are thinking or feeling is normal. I know that doesn't make your situation any easier, but at least you are not alone. I would also understand if you are beginning to build up resentment. Resentment toward many things. It's okay, and it will go away with time."

You want resentment, you got it. I hate this baby. I hate this pregnancy. I hate diva doctors and ditsy doctors and well, just all doctors. I hate Milwaukee. I hate tubes. I hate C-sections. I hate it. I hate it. I hate it.

I hate it.

I don't usually feel this angry. Just right now.

Turnip is growing

In fact, according to the ultrasound estimate, he now weighs in at 3 # 10 oz and has a head circumference of 29 cm (average weight for 30 weeks = 3 #). His head is the size of a 32 week fetus...which doesn't surprise me, given my daughter's enormous melon at birth.

His heart seems to be developing as expected. There is still no narrowing of his one outflow tube (the common trunk) and he doesn't have any backflow. His truncal valve is still a bit thick and his pulmonary arteries are smaller than a typical baby's, but still within range for a baby with truncus arteriosus.

His posterior fossa (one of many fluid-filled spaces in the brain) is a bit larger than average (1.4 vs. 1.0 mm), but still within the range of normal variation. I'm not concerned.

We will return to Milwaukee on Dec 8 for a final check up before birth.

Milwaukee highlights

in order of appearance:

*We arrive for our appointment only to be told there is no record of our appointment.

*Our first appointment, scheduled for 2 hours, takes 3.5...which pushes all of our other appointments back by an hour-and-a-half.

*By 1:30, I'm famished, lying on my back with KY jelly smeared all over my belly, waiting for the perinatologist to come an discuss the ultrasound.

*The perinatologist does not come and does not come...I know what that means: he's found something interesting. Sure enough, after waiting 30 minutes, the ultrasound tech comes in and says the doctor wants to do a trans-vaginal ultrasound to clarify some placental problems. I ask if it's necessary--I still haven't had lunch and the last trans-vaginal I had ended with severe bleeding and cramping. The doctor comes in and pulls a diva. Eventually, he tells me that there may be a serious and very rare problem (vasa previa) that could threaten my life and the baby's life. After some more discussion and further looking at the abdominal ultrasound, I agree to the procedure. It turns out that the placenta has split in half...but that I won't need immediate hospitalization. However, my risk for a C-section is now 50%. That's better than immediate hospitalization, but it still sucks.

*We set an induction date: the baby is scheduled to be born on my birthday (we'll see if he cooperates)

*The Neonatal Intensive Care Unit (NICU) is just as scary as I imagined--wires and tubes and bleeps and blips.

*It snows on our way back to Madison.

Sunday, October 26, 2008

freaking out

Tomorrow we go to Milwaukee and I'm freaking out. I realize that it is a good idea to see the delivery suite, NICU, operating theater, and PICU before we use them. It will be good to deal with the horror of the places themselves before having to deal with the horror of seeing my child in them. I just don't want to see them at all, ever.

I can detach myself emotionally when Kevin and I talk to the doctors or look at ultrasound pictures. It's all hypothetical: words and picture, diagrams and possibilities. There is nothing hypothetical about a scalpel, oxygen tanks are more than words, and heart monitors make more noise than pictures. Tomorrow the possiblities will transform into tangible realities.

Saturday, October 25, 2008

Questions

Tonight, I sat down and wrote out questions for the doctors and medical staff we will meet on Monday. I came up with around 30. The most pressing: will the doctors let me hold my baby after he is born or will they take him away to test and then put him in an incubator (or whatever those things are called)?

We also plan to ask about circumcision (he'll be on super-duper pain meds for his surgery anyway), specifics about Turnips treatment and the induction protocol followed at this hospital, as well as ways we'll be able to connect with Turnip after he's born (Will our three-year-old be allowed to hold him in the hospital? Can we leave him a CD of us talking? Can we leave him a comfort object?)

Any things anybody thinks we should ask?

Thursday, October 16, 2008

insurance

I talked to our insurance company today. They pre-authorized all 6 hours of doctors visits we have scheduled for the 27th in Milwaukee. Yay!

Wednesday, October 15, 2008

flu shot, III

I did it. At today's check up, I got my very first flu shot.

names

Kevin and I had several wonderful names picked out for Turnip--different names for different special days. Then, a few nights ago, I realized we'd have to bag three of the names: Terrence, Theodore, and Thomas. See, if we name Tunrip something that starts with the letter T, his initials will be TA. In addition to being the acronym for his condition, T-n-A is also shorthand for two features men look for in women. Unfortunate. Now, its back to the drawing board for our default name (born 26-30 Dec) and my birthday name (born 31 Dec).

Kevin likes the name Ian. I sort of like James Wilson. We also talked about naming him after a politician, in keeping with my family tradition.

Monday, October 13, 2008

my friend, II

Last week, I received a thick stack of documents from a far-flung friend. Her husband works at an insurance company. He researched hospitals that perform pediatric open-heart surgery and sent me his findings. I knew what would be in the letter. I didn't open it until today.

They sent me far more than I knew to ask for. They sent me up-to-date research not only on treatment centers, but also on Turnip's defect and his long-term prognosis. Based on his research, I feel much more confident in having Turnip treated at the Herma Heart Center.

my friend, I

Saturday, I found a package in my mailbox. It contained a hand-made green baby blanket from a far-away friend. My three-year-old decided she wanted to keep it for herself. Her very ordinary reaction reminded me that, despite his extra-ordinary challenges, Turnip will be her brother.

When I think about Turnip, I see tubes and wires, bandages, scrubs, and an incubator. I left the green blanket on my breakfast bar. It reminds me that Turnip is a baby, who, like all other babies, will need to be swaddled, cuddled, changed, and burped.

My friend's ordinary gift helps me see my ordinary baby.

Sunday, October 12, 2008

sad or mad?

I'm not very good at sad,
instead I just get mad.
I scream and shout
and grump all about
and then I feel rather bad.

If I just let myself cry,
I feel better, by and by.
I don't scream.
I'm not so mean.
And my daughter doesn't get tears in her eyes.

Wednesday, October 8, 2008

conversation

Monday, Milwaukee called to confirm our appointment on the 27th and review the schedule for the day. We will be seeing: 1) a perinatal cardiologist, 2) a social worker, 3) a high risk OB, 4) a neonatal intensive care doc. In addition, we will be taking tours of the NICU, operating rooms, PICU, and parent's room. Our appointments start at 9 am and don't end until 3 pm. By the time the woman on the other end of the line began talking about the Ronald McDonald house, I was having trouble holding it together. Here's one part of our conversation:

Woman: "If the Ronald McDonald house is full, we do have housing agreements with some local hotels. There is also another housing facility, like the Ronald McDonald House. They just like larger donations. So, after you are discharged, you can..."
Me: "Wait, why would I stay at the Ronald McDonald house?"
Woman: "Well, many families who live farther away, don't like to make the drive every day."
Me: "Why would I be making the drive every day? Doesn't the hospital staff care for the baby?"
Woamn: "Yes."
Me: "So, why would I stay?"
Woman: "Well, you could stay if you don't want to drive from home."
Me: "But why would I come at all? "
Woman: "Oh."
Me: "I have a three year old at home."
Woman: "Oh, well, children can stay at the Ronald McDonald house, too. But, visiting hours for younger siblings are limited in the NICU and the PICU, especially when you are due...You know, flu season."

So, I could take my daughter to Milwaukee, stay in a strange environment, have limited access to the baby (because I'd have her with me) and deal with her discomfort at having her schedule thrown off and being in a new environment. Or, I could stay in Madison, keep my daughter on a regular schedule in a familiar environment and see the baby when he gets better. In the hospital there's really nothing I can do that the nurses and doctors can't do. Plus, the baby has no expectation of my presence. We will leave him a CD of our voices, which is all he knows now, anyway.

Plus, I hate hospitals. That's why I didn't go to medical school. I hate hospitals and I do not believe standardized tests (MCAT, boards, etc...) measure anything other than your ability to take a test (I take tests very well, thank you).

Tuesday, October 7, 2008

one of those days

Today, when I woke up, I could tell it was going to be a sad day. I woke up with a sense of lassitude and an aching at my core. If I keep busy, I can hold the feelings at bay--but they don't go away--they just linger until, in a quiet moment, they leak out.

Last night, I didn't wait long enough before giving my feelings vent. When my husband checked on our daughter, she was huddled just inside her bedroom door. She wanted to hold me. She wanted to know why I was crying. She's been having trouble sleeping.

Monday, October 6, 2008

she gets it

Last night, my husband brought our infant car seat up from the basement.

Today, my three-year-old said to me, "you carry the baby in the car seat and then you be the doctor."

"OK, put it down here," she instructed when we got to our front room. "Now, you be the doctor."

"Oh, mama, what is wrong with your baby?" I asked.

"He has a broken heart and I don't know if he will ever get better."

"Let me check him out."

"You need to help him. I will leave and you do scary surgery on him and on zebra-man (one of her favorite stuffed animals). Then I will come back."

times and seasons

This morning, while raking leaves, the words of the Preacher popped to mind: "To every thing there is a season, and a time to every purpose under heaven."

This evening, I re-read the passage. After the portions made famous by Pete Seeger and the Byrds, comes the assertion that "He [God] has made every thing beautiful in its time."

He has made beautiful: "A time to be born, and a time to die...a time to weep, and a time to laugh...a time to get, and a time to lose...a time to keep silence, and a time to speak."

Now is our time to weep, and it hurts.

Sunday, October 5, 2008

dream baby

Last night, for the first time, I dreamed of Turnip as a baby. He was snuggled in my dad's lap in some sort of Sunday School class, when I came to retrieve him. When I picked him up (the baby, not my dad), he (again, the baby) started crying. I was scared of picking him up...scared I might hurt him.

Friday, October 3, 2008

the most helpful person

Last Friday, I called Turnip's cardiologist to see if the appointment in Milwaukee had been scheduled. The cardiologist's nurse, John, called back. He kept me on the line while we called the perinatal imaging center...who were supposed to set up the appointment. The appointment was made on Monday.

Today, Kevin called the insurance to make sure they would cover our visit to Milwaukee. They said, no, they hadn't received a pre-authorization form from the referring physician. (Huh?) So, we called the cardiologist again. Again, nurse John called back, made a three-way call to the insurance company and arranged to have all of the appropriate forms sent to him.

This guy is amazing. He gets things done. He keeps us in the loop. He is unfailingly friendly.

Thursday, October 2, 2008

flu shot, II

My daughter got her flu shot today. Apparently, Kevin felt the shot was a good bet, and he was the one who took her to her check up today. Oh well, I guess if she's done it, I'll do it too.

The doctor also reminded us that she has a heart murmur. I've known this for at least two years. It's never bothered me before. Both her pediatrician in CA and the new one in WI said that lots of kids have murmurs that resolve on their own as the kids grow up. With Turnip's diagnosis, however, I'm a bit more jittery. Maybe we should get it checked out? Nah, the murmur hasn't caused any trouble thus far, so we'll just roll with it.

ghost hearts, II

I looked up Doris Taylor's website at U Minn. She has a video that illustrates her research. I also found the original press release from the University as well as the abstract from their original research article. Although the Popular Science article skimmed over some of the limitations of her work, I'm still energized by what her research group has accomplished.

If she works out the kinks, she will have addressed the problems of:
-waiting for a transplant
-transplant rejection
-the shortage of transplant organs

Now, if only there were comparable advances in the search to cure type 1 diabetes (our family's other chronic disease).

Wednesday, October 1, 2008

flu shot

I have never gotten a flu shot. My daughter has never gotten a flu shot. My husband stopped getting flu shots a few years ago. Every one of my friends (including my husband) who has gotten a flu shot has had flu symptoms the next day. So, in my mind, flu shot = 100% chance of feeling sick.

And all of this is in the off chance that epidemiologists chose the correct strain of flu to include in the flu vaccine. You see, it takes months to grow the flu vaccine. So, about 6 months (yes, months) before flu season hits in the states, scientists check out which flu strains are floating around in Asia (yes, Asia). Then, they make a best guess as to which ones will make it to the U.S.--and begin growing the vaccine. So, in short, the flu shot is a crap shoot. Did the scientists pick the correct strains to include in the vaccine and did those strains NOT mutate during the intervening months?

In the past, the small chance that the shot might prevent us from getting sick didn't outweigh the chance that we'd feel gross if we got it. With Turnip's problems, the balance has shifted. During the past few weeks, we've talked about actually getting the shot. Now, I'm thinking maybe not. It's still just a crap shoot. Granted the stakes may be higher this time around. But, there is still no guarantee that the stupid shot will do any good, anyway.

{yes, I'm grumpy tonight}