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, November 28, 2008

happy


The hospital is not so bad when the rest of my family comes to visit. My daughter likes to lick Turnip (well, my belly) and asks all sorts of questions about when I will come home and what will happen when Turnip comes out. During this visit, she wanted to spend quite a bit of time pretending she was Turnip. She goo-gooed and ga-gaaed and wanted to be held.

She also ran over her foot with a rolling stool and ripped her toenail back pretty far. I knew it was serious because she just looked shocked for a moment before starting to cry. I think my husband and I scared her a bit when we told her that her toenail might fall off. She just wanted to sit in the bed with me for 20 minutes--and this is not a passive, snuggly child.

Later, when we took a shower, she commented on my large, large belly and wanted to know if I would cry when Turnip came out. I think her toe injury helped her understand how I will feel. We talked about how sad I was when she got hurt and how much I wanted to help her. Then we talked about how Turnip will have an ouchie, too, when he is born...and how I will want to help him.

Thursday, November 27, 2008

anti-labor drug

Today, while browsing the web (after a wonderful turkey dinner with my family), I ran across this study. I got this drug for the 48 hour window after I arrived at the hospital...apparently, this is the perfect way to use the drug. Interesting fact from this study: only 40 percent of women who go into preterm labor between 24 and 34 weeks gestation carry their babies to 37 weeks. I want to be part of that 40 percent.

Happy Thanksgiving!

Tuesday, November 25, 2008

potential names--Dec 15

OK, we're back to the drawing board as far as names are concerned. Turnip will not hit anyone's birthday, so he gets his very own name. However, his first name has to be a bit unusual as his last name is as common as air.

Possible first names: Eli, Oliver, Boyd, Boyett

Possible middle names: Roosevelt

Problems with first names: Elijah is super popular right now. We don't want Turnip to be one of many "Eli's" in his class. People will ass-u-me we named him after a religious leader if we go with Boyd--and it gets shortened to Boy. Kevin doesn't like Boyett, pronounced "Boyd." Oliver sounds a lot like our daughter's name (it has v,e,l ).

Good things about oliver: if we go with this name, our family acronym will be a JOKE.

Hmmm.... Maybe Oliver Boyett or Eli Roosevelt...Oliver Roosevelt has too many O's and V's.

I still wish he was a girl. Girl names are easy. You don't have to worry about being too sissy. Or too odd. Had he been a girl, he'd have been Roosevelt Marie.

Monday, November 24, 2008

new delivery date, II

I talked to my perinatologist today. She agreed to push the delivery date out one more week, to Dec 15. Of course, if anything exciting happens between now and then, all bets are off. Dec. 15 puts Turnip right at term--which eases my mind.

I just wish I could talk to the doctors when Kevin was here. I'd like his input at the moment I'm asked to make a decision. He also frequently has really good questions for the doctors.

Sunday, November 23, 2008

realization

Yesterday, I learned that my new niece will stay in the hospital 6-8 weeks. She'll get to go home right around her due date. Suddenly, I realized that if Turnip comes early, he will also stay in the hospital until right around his due date. I've been assuming that he'll have his surgery during week 1 of life, and then have 2-3 weeks in-hospital recovery time. BUT, that prediction was based on him being born at 39 weeks. If he's born earlier, he'll probably have a longer "recovery" time as he'll need to recover not only from his surgery, but also from his prematurity.

I feel like I'm living in a state of perpetual flux. There are no givens, just a lot of unknowns.

Saturday, November 22, 2008

welcome, baby!

My sister-in-law gave birth this afternoon. The baby's 3 # 12 oz. Both mom and baby are doing fine, but baby will be in the hospital for 6-8 weeks to give her time to mature.

contagious?

This morning I got a phone call from my mother-in-law. It turns out my sister-in-law, who is due 1 week after me on Jan 14, is also now in the hospital. Her water broke last night. She's getting the steroid shots and IV and everything else. The only difference between her hospital stay and mine is that hers should be much shorter.

One expectant mother in the hospital at a time is enough for one family. During my first week in the hospital I tried to bargain with God (not that I believe that God makes bargains, just that I didn't want anyone else to be in my position). I argued that my complications were sufficient for our family. I guess that argument didn't hold water.

Friday, November 21, 2008

no plan is a good plan

I chatted with one of the high-risk OBs today. If I make it to 36 weeks without any further complications, they may let me go all the way to 38 weeks (a baby is considered full term at 37 weeks). Of course, if there are complications tonight, I could deliver before dawn.

Sooooo, I may be in here 4 more days or 5 more weeks...

I'm satisfied that I'm doing everything possible to keep both Turnip and myself as healthy as possible. I'm confident that there's nowhere we would be safer.

physical therapy and nutrition

To help cut the boredom...the nurses sent in a physical therapist. Now, I have an upper body workout regimen I am allowed to do 2-3 times/day. It really helps.

I also talked to a nutritionist. I'm lying on my back all day and all night. I'm also pregnant. I have no idea what/how much I should be eating. She said I should eat whatever I was eating before I became prone. Problem is, I'm just not as hungry.

Thursday, November 20, 2008

nutters

Today I asked my doctor if I could stay in the hospital for longer. Now, before you jump to the conclusion that I'm nutters, let me assure you, I am nutters. I've been in the hospital for over two weeks. I really don't like it and I have to stay until Turnip's born. Right now, in the best case scenario, that will be another 2.5 weeks.

At this hospital, women with a previa are delivered at 36 weeks. However, I don't just have a previa. I also have a Turnip with a Truncus. The bigger he can get before he's born, the better. Of course, the longer he stays inside, the greater the chance that I'll have complications...and an emergency C-section. My doctor said she'd run the numbers and get back to me tomorrow.

Wednesday, November 19, 2008

frustration

Being stuck in one room, in bed, with no control over who comes in or goes out is awful. It is not a, "get away," as one doctor tried to spin it. It's not relaxing. Relaxing is snuggling with Kevin and Evelyn at the end of the day. At times, its all I can do to not start screaming in frustration. What makes it worse is that I'm choosing to be here. I only have so much self-control and all of it is going into staying put.

I don't want advice on how to be happier in bed. I don't need a pep talk. I just need people to acknowledge that this sucks and it will continue to suck...and not to expect me to be perpetually perky.

I'm sure that in six months, I'll be grateful that I was here. Right now, I'm not. I'm only stubborn enough to stay, not mature enough to appreciate my confinement.

friends, V

My Aunt has come to visit several times. I'm so glad we live close to her. I think she's the one person who understands what I need. All of my family members who believe she is a mild-mannered saint have never seen her in a medical context. She's as opinionated, vocal, and stubborn as the rest of us. I'm so glad.

Tuesday, November 18, 2008

new delivery date

Yesterday, the birth was scheduled for Monday, December 8. The anesthesiologist came to see me. He began by quipping, "I'm from anesthesia and I'm here to please 'ya," and continued in the same vein while visiting for nearly an hour. He assured me that if more than the baby needs to come out, he will push an anxiolytic that will calm me down and erase my memories...and best yet, he won't tell me he's pushing it. Yay!

sweater for Turnip


I finally finished the sweater I've been making for Turnip. Well, almost finished. I still need to sew in the buttons, but I don't have a needle, so, that's proven a bit difficult.

chocolates

I ordered myself some chocolates today. The chocolates cost less than the shipping..but they still won't be here (well, at our house) for three or four days. It's so frustrating not to be able to go and get the things I want--a blender, toothpaste, pants that fit, bleach, a needle, grapefruit--when I want them.

Monday, November 17, 2008

bad first impressions...

...are hard to shake. However, in the interest of fairness, most of the nursing staff have been on top of things the past few days...and friendly in a non-intrusive way. I still think longingly of Meriter, but I may be able to tolerate another three weeks here.

I'm still not super impressed with the doctor-patient communication. At Meriter, I got to sit down with my various doctors and discuss the care Turnip and I would receive. They listened to me, I listened to them and we reached an agreement on what would be done. If they needed to consult with someone else, they did it and then came back to tell me what was going on.

Here, the doctors come in and tell me what they want to do. When I ask about other options, they don't give me a straight answer. Instead, they tell me what they want to do, again. If I push really, really hard and act like a complete witch, they will explain my options. It's as if they're trying to protect me from myself, as if they think I'm 12 or otherwise incapable of participating in a decision that takes into account all of the options, as well as the doctors opinions as to the best course of treatment. I don't appreciate the infantilization. I also don't appreciate the fact that after visiting me, the doctors-in-training don't come back to confirm what course of treatement they recommended for me after they consulted with their bosses. So, I'm not told what my options for treatment are, the doctors don't listen when I talk, don't give straight answers to yes/no questions, and don't inform me of what care I will be receiving.

Yesterday, I was so frustrated with this lack of two-way communication, that I was ready to check out and try to check back in at Meriter for the duration. However, today I spoke with one set of doctors and explained my frustration. They seemed responsive. I'll see my OB later today and I plan to explain the same thing to her. I'll give them another week. Hopefully, I'll start getting treated like a human being instead of a slab of meat. I'm not sure I really want to brave the ambulance ride back to Meriter. It was so bumpy...well, you can read my earlier post.

If anyone ever ends up in the same situation, however, I would encourage them to refuse to get transferred to Froedtert. The slight advantage to Turnip does not outweigh the constant mental stress.

Saturday, November 15, 2008

sedation

Today I asked if I could just get general anesthesia for Turnip's birth. I have no desire to be awake--especially as Turnip may not be the only thing getting taken out. I checked when my daughter was born, too. The answer today was the same as it was three years ago: no. Doctors are too scared of getting sued. What other major surgery (other than brain) do you have while fully conscious? Maybe I'll just scream as loud as I can the whole time so I don't have to hear anything. Who, in their right mind, wants to have a memory of getting eviscerated?

Friday, November 14, 2008

new hospital sub-par

All I can say is Froedtert (isn't that a mouthful) sucks. Their facilities are shoddy, their nursing staff lacks confidence and is inattentive (my meds were over 2 hours late both times yesterday and I didn't get the evening dose until until I tracked down a nurse after 11 pm. Of course, the nurses come in very frequently when I have visitors...I guess they want to put on a good show, or maybe I just had a good nurse on Wednesday), the people who answer the call button bite my head off ("what do you want?" said with a snarl), and the case management team gave incomplete information to only one of my insurance companies (they completely neglected to send any to the other one...even after I asked repeatedly if that had been done). I don't have any metric by which to measure the medical care, but I hardly believe that the doctors will be any better than the facility in which they choose to work. I want high-quality care for me, not just for Turnip after he is born...and he can be transported back to the Children's Hospital after he is born--he should be more than stable enough. I think I'm going to find out about switching back to the Madison hospital later today.

The contrast to Meriter (the hospital in Madison) is striking. I didn't realize what a good job they were doing until coming here. I'll have to write them a letter (after I straighten out the insurance mess).

Thursday, November 13, 2008

holding pattern

For the time being, I get to hang out in my room and wait, and wait, and wait. My husband and daughter plan on visiting two (maybe three) times a week. They'll be back on Friday. Much to my daughter's delight, they will spend the night in a hotel (she loves hotels), so I'll get to see them two days in a row.

I've finally calmed down from the stress of getting transferred. Today, I wrote 8 thank you notes, read a few essays, and am getting ready to do some writing. Enforced isolation should be good for my output. I may even finish the contract I signed before Turnip comes.

Wednesday, November 12, 2008

milwaukee

Got here last night around 7. The ambulance ride was, shall we say, bumpy??? I thought I might just pop Jr. out en route.

My first impressions of the hospital were not so great. Today, though, I got to switch rooms, got a more comfortable bed, got a new delivery date, met with a perinatologist (high-risk OB), visited with my husband and daughter, and finally got some food around 2 pm. I feel so much better. I think the biggest factor was seeing my family.

Good news:
-Turnip now weighs in around 4#3oz, and has a head circumference of 30 cm.
-No more bleeding since Tuesday morning
-The folks in Milwaukee don't think there is a vasa previa...but say they can't be sure
-my daughter drew me a picture of a skeleton that is grabbing some food that no one else wants. It's hanging on my wall.

Bad news:
-Turnip's definitely coming out earlier than planned (Dec 10 at the latest).
-I'm now living over 100 miles from my daughter and husband
-The doctor explained that the placenta previa is not marginal. It will not be going away. I definitely get a C-section.
-The doctor ran through possible complications of the previa--I'm a little freaked out. I know the odds, but...I reject applying population-level statistics to individual circumstances. They don't apply (I'll save my rant for later--or you can call me. The rant lasts about 5 minutes).

Tuesday, November 11, 2008

not going home

Well, it looks as though I'll be doing a lot more of these updates from the comfort of a hospital room. I just met with one of the perinatologists a few minutes ago. He is convening our (Turnip's and my) medical team to decide what to do with me. In light of the additional bleeding I had this morning, they will be deciding not whether or not to send me home, but when to send me to Milwaukee to wait to give birth.

I must say I am relieved. The idea of going home with the complications I'm now aware of scared me quite a bit. The idea of my husband driving me to Milwaukee also scared me...What if we got 1/2 way there and something happened. Wisconsin is not like the SF Bay Area. 1/2 way between Madison and Milwaukee is farmland. Most of the distance between Milwaukee and Madison is farmland. The doc said I will get medical transport to Milwaukee whenever I go.

I was worried about Turnip hitting his insurance cap. Now, I'm starting to wonder about my own. If he stays in till 36 weeks, I will have spent 5 weeks in the hospital, had a C-section, etc... Oh, well. Good thing I signed us all up for Medicaid.

Monday, November 10, 2008

visitors

My mom and daughter have been visiting every day.

Sunday, November 9, 2008

poor baby

Apparently, my three-year old has been struggling with my absence. She's had several potty-related accidents and was up for two hours last night crying for me.

I think I've convinced Kevin to buy her an early Christmas present. A week ago, she and I went into a toy store to buy her friend a birthday present. She spent quite a bit of time playing with the dollhouse on display. I was thinking about getting her one for Christmas, but I think Kevin's going to buy it for her now and set it up in our bedroom, so she can play with me when/if I go home.

I just want to go take care of her.

bump in the night

Another good nights sleep...except for my middle-of-the-night fears. Since arriving, I've been focused on how the various pregnancy complications would affect Turnip. Last night, around 2 am, it occurred to me that I could have a bad outcome as well. I spent a bit of time thinking, "I don't want to bleed to death." At the same time, I realized exhaustion was driving my fears.

This morning, I talked to the medical resident on duty--who acknowledged that there are risks, but assured me that things should work out ok. He said something so simple, that had completely escaped me during my moments of panic. If I start bleeding, I can be given blood transfusions. Oh, yeah. Duh!

He also said that if something were to happen in the hospital, a C-section could be performed within minutes and as soon as the baby is born, my risk goes way back down.

If I get sent home on Tuesday, it would take an additional 10 minutes to get me to the hospital...but then the C-section could be done just as fast, as soon as I got here. During transit, I could be given saline to keep me stable.

Saturday, November 8, 2008

cardiology update

The pediatric cardiologist just visited. Apparently, two other babies in Madison have been born prematurely with Truncus in the last few years. Both were treated in Milwaukee and both are doing well.

According to the doc, Turnip can have surgery once he weighs 2000 g. That's the minimum limit for the heart-lung bypass machine. If he's kept up his growth rate since our last ultrasound, he should be nearly there already.

I still hope he gets to cook inside for a while longer. According to this fetal growth chart I found online, he's about two weeks ahead of schedule, weight wise...and he should gain a little more than 200 g (1/2 #) per week until he's born, if all goes well. So, right now he's somewhere around 4.4 #...which means at 36 weeks he'd be 6.8# and at 39 weeks, he'd be around 9 #.

The bigger he is when he comes out, the bigger his replacement conduit and valve can be and the longer he can go before he needs his second major surgery.

Grow, baby, grow!

Friday, November 7, 2008

good afternoon

I've been moved from the labor and delivery floor to the high-risk obstetrical floor of the hospital. This is good. It means a few things. 1) In the opinion of the doctors, I am not in imminent danger of going into labor. 2) I get a MUCH more comfortable bed. 3) I no longer have to wear the gooey fetal monitors 24-7. 4) But I do get to wear pressurized stockings on my legs. As I'm confined to bed, the docs want to prevent any blood clots. 5) I have a much prettier view out of my window: of snow!!!!

Hospital stay...

Well, here's a nice shot of J on wheels and another of her arm contraception before going into the shower. She really wants to pull it off. If all goes well, she'll be able to go home Tuesday, and Turnip will still go in to be induced at the end of December.

good morning

Sleeping in a hospital bed designed for delivering babies is, well, difficult. Thankfully, the nurse just brought in a softer mattress and an egg crate. Hopefully, tonight will be easier.

Updates:
-All is calm
-Except Turnip...he's currently practicing some quite involved yoga moves.
-I get my second steroid shot this afternoon
-The neonatologists just came in (student, resident, fellow, and a full-fledged doc (the chocolate doc from a previous post)) and said I'll be here till Tuesday for observation.
-If there is no more excitement by Tuesday, I'll most likely get to go HOME.
-If there is more excitement by Tuesday, I'll get sent to Milwaukee.
-In a month, the docs will re-check my uterine anatomy. If the blood vessels have moved out of the way, I'll revert back to giving birth on the 31st.
-If they haven't moved out of the way, I'll have to get a C-section at the beginning of December.

Thursday, November 6, 2008

hospital update

The doctors here did another ultrasound (4 of them actually) about an hour ago. In the words of the perinatologist (high-risk OB), I just bought myself a C-section. It turns out that I have not only placenta previa, but also vasa previa (This is the thing about which the docs in Milwaukee were also concerned). Apparently, vasa previa is associated with a succenturiate placenta, which I also have.

If I go into labor, the baby will likely bleed to death. SOOOOO...I get to stay in the hospital for 5-7 days for observation (any suggestions on how to avoid going out of my mind with boredom?) and I will have a C-section at 36/37 weeks instead of being induced at 39 weeks.

There is a chance I could go home for a few weeks at the end of the 5-7 days. There is also a chance that I would be transferred directly to Milwaukee to await delivery.

Suprisingly, I'm not feeling too upset...just a little warm (I think it's Turnip acting as a heater).

a blip on the radar

So, today my daughter and I made chocolate chip cookies and delivered them to a friend. Then, we went to the bookstore to buy my mom a map and some books by local authors. Then, we called my husband and he drove me to the emergency room.

I've had a bit of bleeding, which, with a placenta previa, is cause for concern. The bleeding has stopped, but the docs are keeping me in the hospital for observation and so they can give me drugs. I've already gotten some drugs to calm my uterus (I was having some moderate contractions) and have had my first steroid shot. I'll get another one in 24 hours. The steroids are to help Turnip's lungs mature, just in case he has to be born now.

The hospital has wireless internet access--so I've got lots to keep me entertained.

Tuesday, November 4, 2008

trach

Today, at my daughter's drop-in preschool, I observed a little girl with a tracheostomy tube. It shook me.

When we visited Milwaukee, we were told we need to prepare a detailed list of treatments we will and will not accept on behalf of Turnip. The thought of making that list shakes me as well.

Sunday, November 2, 2008

my friend, III

Today, a friend at church asked how things are going. She's a nurse at a NICU in Madison and I've told her some of Turnip's story. As I brought her up to date, she cried for me.

discouraged

For no really good reason, yesterday I felt very discouraged. I don't like discouraged--it lacks spine. Frustrated, Angry, Indignant, Irritated, Overwhelmed and even just straight Sad all have within them the seeds of action. Discouraged, however, lacks impetus. For me, discouragement = sadness + a sense of helplessness. Why bother trying, when your efforts are thwarted?

Funny to feel discouraged and disgusted by my discouragement at the same time.