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 31, 2008

inter-operative update IX

It was good to spend time with Evelyn the past two days. It was also good to see Oliver again this evening. He's much less swollen than before, I can see his eyes flicking back and forth behind his eyelids, and he wiggles when I touch his feet. The nurse also told me that his heart has been beating on its own since Sunday. I couldn't ask for a better birthday present (coupled with Evelyn helping me make an apple pie for my birthday--the tradition continues).

Tuesday, December 30, 2008

inter operative update 8

From an email Kevin sent at 5:30 pm.

Oliver seems to be doing somewhat better tonight. They gave him some blood to improve his blood pressure and urine output, and now he's peeing more. He's also starting to move a little. He's breathing on his own to some extent on top of what they're doing with the respirator. He also moves his feet a little.

post-op 7

The docs took Oliver off the ECMO this morning. Dr. Mitchell felt it went well and he told me that he's happy with Oliver's progress. They are giving him some epinephrine again to help his heart out as it's now got more work to do. They're also giving him albumin to increase his blood volume (I think). Dr. Mitchell said that if things continue to progress, they'll close his chest cavity this Friday. The nurse mentioned that Oliver did move around a bit this morning before the ECMO removal which came with more drugs to keep him still.

Monday, December 29, 2008

post op update #?

I hung out with Turnip and his nurses for a while tonight after taking Jesse back to Madison. He seems about the same as this morning. The nurse said that they might take him off ECMO tomorrow morning. They'll reassess through the night and in the morning and then decide for sure. I've noticed that he looks less jaundiced now than he did pre-op, which seems like a good thing. He's been off the paralysis drug for a while now, but still isn't moving (not unexpected). I guess he's still heavily sedated.

I was happy to go work out tonight at the WAC, nice perk for those at Ronnie's.

inter-operative update V

Drugs: As of yesterday, Oliver had been weaned from his heart medications (epinepherine and norepinepherine). When I called this morning at 9:10, the nurse said she was just getting ready to turn off the veconium (sp?). Once that works it's way out of his system, Oliver will be able to move...and potentially pull out his tubes and wires. The nurse said that it may take up to 24 hours for the drug to flush from his system.

ECMO: As of this morning, the doctors plan to keep Oliver on the ECMO machine until tomorrow. They want him to "make more urine" before they take him off, possbibly tomorrow or the next day.

Heart and Lungs: When I talked to Dr. Ganoyan (an ICU doctor) yesterday, she said Oliver's lungs are quite small and underdeveloped. In fact, she said she was surprised that he was able to gain weight before his surgery, let alone breathe without assistance. Go, little man! However, she said that his lungs should recover and catch-up to where they should be, size-wise. Also, yesterday morning, Dr. Mitchell said that Oliver's heart was regaining function. It's starting to contract in a more coordinated manner. Dr. Ganoyan warned me that he is not able to make his own heart beat. He's on an electrical pacemaker. However, Dr. Ganoyan felt optimistic that Oliver's heart would learn to beat on its own again. If it doesn't, Oliver can get a pacemaker.

Sunday, December 28, 2008

inter-operative update IV

Dr. Mitchell called at 10:30 this morning to let us know that Oliver was stable and had been successfully connected to the ECMO machine. The doctor said that Oliver's aortic valve was working very well and that the hole in his heart was smaller than he thought yesterday. He called it a "trivial VSD" and said that it shouldn't pose any problems in the future. YAY!

He also said that Oliver did not have a lot of bleeding and that things looked promising. What is more, he thought Oliver would only have a short course (2-3 days) on ECMO. By the time we got to Oliver's room, things were much calmer than last night, although, Oliver did look quite a bit more puffy. The nurses said that he hadn't yet been started on heparin (the blood thinner--to prevent clots), but that he would be in the next few hours.

We left, made Oliver some milk, ate lunch and went to church. It was nice to go to church. I thought of two New Year's resolutions, was deeply moved by Away in a Manger, and appreciated the final speakers distinction between faith and positive thinking. "Faith," he said, "is not the same thing as positive thinking. Faith is not praying enough and pestering God until He gives you what you want. Faith is saying you will accept what God wants and asking for the strength to get through your challenges."

On our way home, we passed a sports store and finally got Kevin some athletic shoes, socks, shorts, and a T-shirt (Thanks, Gma and Gpa Anderson). He's on his way to the gym as I type.

We also stopped at Chipotle to eat before returning to see Oliver at 4:30. When we got to his room, Oliver was bare. The nurses hadn't gotten a heads up that we were on our way and hadn't had time to cover up his chest/tubes/etc... My little borg baby looked quite futuristic and scary. Like father, like son (as far as borg-ness goes). However, the nurses assured me that after some bleeding when they stated the heparin, Oliver is now stable...and is making good amounts of urine. Kevin has taken to calling the little man his pee-pee prince.

Kevin recorded a brief tour of Oliver's world this morning. I thought about taking a picture of his little body this afternoon, but couldn't bear to do it. Maybe later, maybe I'll save it and just show it to him if he asks once he is older. I think he'll be especially interested to see how swollen his little boy parts got.

inter-operative update III

I just called the PICU for an update. The doctor is currently, "exploring Oliver's chest and placing the cannulas [tubes]," for the heart-lung bypass machine. "Oliver is doing well with it," the nurse assured me. "When you come in, don't mind all of us scurrying about. It does not mean things are going poorly. There is just a lot of scurrying around right when they go on ECMO. Let us know when you come in we will make sure you get to get in and see him. But take your time, because you can't go in right now."

Kevin and I are going to take a second shot at his atheltic shoes before heading over to the hospital. Then, we plan to go to church at 1 pm. I haven't been to church since the end of October. I'm kind of excited to resume a few of my regular activities.

inter-operative update II

The overnight doc just called. The surgeon will put Oliver back on the heart-lung machine (ECMO) in about an hour. Oliver's blood pressure hasn't recovered. Consequently, his heart is working too hard. It needs a break so it can heal. The nurse will call us after Dr. Mitchell is done and we will go visit the little man.

Saturday, December 27, 2008

inter-operative update I



We just got back from the hospital. Oliver is in his new room, attended by about eight medical personnel. He doesn't look as bad as I imagined, although the nurse said he will swell up more in the next few days. As Kevin and I left, the respiratory therapist came to give him nitrous oxide and the doctors were preparing to place a catheter to drain his abdomen. Apparently, he has a fluid build up that is interfering with his lung function. The doctors did leave his chest open and, yes, I can see his heart beating. He's hooked up to more monitors now than before. He's also pharmacologically paralyzed and unconscious.

The tube coming out of his right nostril (bottom of photo) is his breathing tube. The tube from his left nostril is draining air from his abdomen. The large tubes from his chest are draining blood. He had his blood volume replaced twice over during the surgery. He's still bleeding a little bit, but much less than before. The patch on his head and the matching one on his back are measuring the oxygen levels in his brain and liver. Right after the surgery he was producing urine well and had good brain function. As of 9 pm, he was not producing urine very well. Two of the dental floss looking wires coming out of his chest are pacemakers. Two others are measuring the blood pressure in his atria. He has a central line and his PIC.

He's not currently on the heart-lung machine, but the doctors were considering it as we left, because Oliver is having to work so hard. The next few days will be touch and go, with lots of tweaking medications and monitoring his condition.

I felt much more hopeful after I talked with the surgeon. Now, I feel more nervous. Kevin seems overwhelmed by all of the hoopla. He hung back from Oliver's bed and left his room fairly quickly. I'm surprised that I wasn't more overwhelmed. It helped that I could see Oliver in the middle of everything. His face still looks the same. All of the medical personnel and machines are simply doing for him what I did for eight months.

surgery update VII

The PA came in at 7 to tell us that they were cleaning things up and would bring Oliver by en route to the PICU shortly. At 7:15 the surgeon came by to tell us that things went well. Almost everything was fixed. Oliver still has a small hole between his ventricles and a small hole between his atria. Apparently the muscle between his ventricles ripped a little after the heart restarted. The doc intentionally left the atrial septal defect as a pressure release valve (I don't understand).

While the doctor had planned to take out one of the leaflets in Oliver's aortic valve, he ended up doing something different. Two of Oliver's coronary arteries (the blood vessels that feed the heart) branched off right next to Oliver's two deformed leaflets. Instead, the surgeon used stitches to tighten up the aorta in general. According to the surgeon, his aortic valve is "ugly, but functional." It works better now than it did before the surgery: it has trivial leakage (vs. mild to moderate) and no narrowing.

The doctor put in a 12 mm conduit and hopes that it will last until Oliver is somewhere between four and 10 years old. At that time, he will also repair the VSD (hole between the ventricles). He would have repaired the VSD today, but the surgery had already gone on for a long time. From the time they wheeled Oliver away to the time we saw him en route to the PICU at 7:30 pm was 9.5 hours.

He's now in his new room and Kevin and I are going to see him.

surgery update VI

We're back in the family surgery waiting room. I couldn't wait for the dinner at Ronnie's. No news yet. I haven't been this tense in years--nine years, to be exact. I remember calling Kona Village after landing in Hawai'i the Wednesday before Thanksgiving in 1999. The operator answered and said, "Hello. Kona Village. Will you please hold?" At the time, nothing could have been worse. "I'd prefer not to," I replied. A few minutes later, the operator picked back up. "Where is my mother?" I asked, "And, how can I get to her?" I feel now the way I felt then.

surgery updates IV & V

At 3:20 Kevin and I decided to go shopping. He needed athletic shoes and I needed some leave-in conditioner. Nurse Brandy called at 3:40 as I walked into Walgreens. "We're starting to warm Oliver up," she said. "You might want to come back if you want to see him before we take him into the pediatric ICU. The soonest we will wheel him by will be in an hour."

Kevin and I finished our shopping (me successfully and Kevin unsuccessfully) before heading back to the family surgery waiting room. While there we saw another mother who is staying at Ronnie's. Her baby had surgery to reconnect his esophogaus and stomach three weeks ago. We chatted about the stress of waiting. Her son's surgery took 9.5 hours, but had been predicted to last 12.

At 4:50, nurse Brandy walked in and told us, "Oliver is fine. His heart is beating again, but we do have pacing wires in to give him an extra kick if he needs it. Things are tense in the OR right now because we're getting ready to take him off the bypass machine. We'll know if he needs the pacing wires once he goes off bypass." She said that they were giving him extra blood products to reduce the effects of the heparin he was on during surgery (I think heparin prevents clots...Once Oliver is put back together, we want his blood to clot so he doesn't bleed too much). Once again, she told us that the soonest we might see Oliver was in an hour. We've come back to Ronnie's to eat dinner and relax. We'll head back to the waiting room around six.

surgery update III

Okay, Jesse wanted me to post another update as I just talked to the PA. She said things are progressing as expected. They're currently attaching the new trunk (?) to the pulmonary arteries. Jesse just got up from napping.

Surgery update II

So, he's in surgery right now. The PA just called and said he's on bypass, and things are fine. They're reconstructing the truncus problem now and next will be the VSD. She wasn't sure when they'd be done.

Jesse has been napping. I'm watching the movie Word Wars on Netflix. It's about Scrabble players and tournaments.

surgery update I

Nurse Brandy just called from the OR. When she said, "They've just made the first incision," I felt a physical shock. She quickly continued, "Oliver did very well with the anesthesia and the breathing tube and getting all of his lines in." I decided I don't want hourly updates, so she will call next at 1:30 pm.

The volume on the phone was turned up fairly high, so Kevin heard both sides of the conversation. I'm glad, because I tried three times to repeat what the nurse told me and couldn't get it out.

gratitude, III

Today, as he got ready to wheel Oliver away, the anesthesiologist, Dr. Hoffman (?) turned to me and said, "There is nothing I would rather be doing." I'm so grateful for driven doctors and nurses and other medical care staff who love what they do. I'm glad they want to stand next to my baby for eight hours to make sure he's O.K. and not in pain.

I'm also grateful for drugs. Oliver will be on fentanyl (sp?) during and after the surgery to control pain and minimize his body's response to the shock of surgery. I'm glad he won't have to feel it all. I'm also glad he won't remember any of the surgery or his recovery. I'm glad I got similar drugs for his delivery and other pain medications after the pain receeded.

I'm down to two doses of pain meds a day. I don't hurt, I'm just weak. Seven weeks of bed rest certainly atrophied my muscles and shot my cardiovascular fitness. Walking makes me pant. However, I haven't been in a wheelchair since Thursday. I am getting stronger.

surgery day


By the time Kevin and I arrived at Oliver's room at seven this morning, he had already had his chest scrubbed twice and was warming under a heat lamp. Due to some emergencies in the Pediatric ICU (PICU), Oliver did not get taken back for surgery until ten. Oliver hadn't had anything to eat since one am and got increasingly fussy. The waiting also proved painful for my antsy husband. I was out of the room when the nurse came to tell Kevin the doctors were on their way. She told him they would want to come in and talk to him. According to Kevin, he replied, "I don't want to talk to them. I just want them to shut the h%!! up and get to work."

By the time the doctor walked in, Kevin was amped up even further. As the anesthesiologist explained the purpose of the medications (1) to wipe out the body's respose to the incredible trauma it was about to experience and 2) to obliterate consciousness and prevent pain), Kevin muttered, "Let's get this show on the road." "You don't have any questions?" asked the doc. "No," I replied. "We trust you." "Are you waiting for someone else to get here?" asked Kevin. "If not, take him away."

We walked half way to the OR and then gave Oliver kisses. "I love you, little man," I told him. "You get to go get your heart fixed now. Then breathing will be so much easier." Kevin just said, "Be tough, Turnip."

Now, we're sleeping and waiting back at the Ronald McDonald House. The surgery should take six to eight hours or more.

Friday, December 26, 2008

last day in the NICU


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Up till now, I've tried to post pictures of Oliver looking as much like a "normal" baby as possible. However, he has been in the neonatal intensive care unit hooked up to lots of whistles and bells. To celebrate his upcoming surgery and commemorate the past two weeks, I thought I'd pull back and give a wide-angle view of his room (26) in Pod E on the 3rd floor ICU of the Children's Hospital of Wisconsin.

You can just make out the arm of the rocking chair where I spent most of my time visiting Oliver in the bottom left corner of the picture. He is sleeping in the plastic bassinet. White wires running to the left are his renal and cerebral sats. The monitor for them is cut-off on the far left side of the picture. The clear tube running to the left connects to the pale blue IV infusion pump (which is giving him sugar water and electrolytes from the bag hanging above it) and the large, white syringe full of lipids with a green display panel. The three wires trailing off to the right of his bassinet are 1) pulse and breathing monitor, 2) oxygen levels from his hand, and 3) oxygen levels from his foot. All of these connect to the large monitor on the top right of the photo. I also took a separate photo of his monitor. He never had to have oxygen, so we never used a lot of the equipment on the right side of his bed.

I taped photos of our family to the sides of his bassinet so that he could look at them if/when he woke up alone. I found him staring at them a few times. Today, around 5 pm, he woke up and watched me while I held him. If I turned him away, he turned his head to look back. It was fun to see him awake.

This evening around 9 pm, Dr. Mitchell, his surgeon, came by to explain Oliver's procedure. Everything sounded familiar except for one twist. Turnip's one existing outflow valve has four leaflets...and it is mild to moderately leaky. According to Dr. Mitchell, removing one of the leaflets can sometimes fix the leakiness. So, after he opens Oliver up, he will decide whether or not to resect Oliver's extra leaflet. If he does, the surgery will last longer.

update

Yesterday, Oliver broke the 7# barrier. He's now two ounces over seven pounds. He continues to eat well, although not from me. As soon as I pick him up, he falls asleep. In the last few days, I've also heard him belch, fart, and coo. Only a parent could be so proud of the first two.

The occupational therapist came by yesterday to assess his brain and muscle function. I can't remember the name of the test. I think it started with duB...? Anyway, it is used to test both full and pre-term infants. Although Oliver is about 38 weeks gestation now, he tested at about the 34 week range. The therapist said this was actually good for a baby with a heart problem. Many babies with heart defects are so tired that they test even farther behind. The tests she did included repeatedly shaking a rattle by his ear and flashing a light in his (closed) eyes. She measured whether or not he could tune out the obnoxious sound and sight. She also tested his grip and his posture. As we already knew, he has low muscle tone in his trunk, i.e., he's floppy. He also doesn't track sounds very well. He might move his eyes to follow a sound, but he doesn't turn his head. I'd say he does a bit better when the sound is my voice. He also cranes his neck to look at the ceiling lights.

The doctor also came by to tell us that the genetic testing was complete. Oliver gets a clean bill of genetic health. We no longer need to worry that he's a mutant..well, at least not any more of a mutant than any child of ours would be!!!!

As of this morning, his oxygen levels are down to the low- to mid-eighties and his surgery is still on for tomorrow.

Thursday, December 25, 2008

gratitude, II

To continue, I'm grateful for my children. Every time I walk (or get pushed) from the Children's Hospital of Wisconsin parking lot to the NICU to visit Oliver, I pass through the Skywalk Gallery. Hanging between watercolors of butterflies, waterfalls, and flowers are two dragons: the fire dragon of happiness and the metal dragon of strength. Every time I see the red and blue dragons, I think of Evelyn and Oliver.

Evelyn is very empathetic. She tries to help others. During my most recent visit home, one of her friends and his little sister came over. As they were leaving, "baby" Jane got very upset. Her mother was trying to make her leave one of the pacifiers that she had been playing with. Evelyn said Jane could have it and then she decided Jane's big brother needed one, too. I hope their mother didn't mind too much.

Evelyn brings such joy to my life. She frequently insists on family hugs and she obsesses about the number of chairs in our dining room (We have four). A few months ago, she realized the mismatch between the number of chairs and the number of people in our family. She started saying, "We need another person in our family." She got excited whenever someone, like my Aunt Mary, came to dinner becuase then, "there's a chair for mama. there's a chair for papa. there's a chair for Evelyn. And, there's a chair for Aunt Mary." Now, she's excited because Oliver will fill the extra chair.

I think I will have a hard time when she gets older and discovers that she is not simply an extension of me. She feels necessary, like one of my hands.

Because of Evelyn, I can appreciate Oliver more. As she has grown, I have learned to enjoy motherhood. I don't feel the need to fight Oliver over breast feeding the way I fought Evelyn. Before Evelyn arrived, I worried that motherhood would strip away my personal identity. She showed me that I could be myself and be a mother, both at once.

Evelyn arrived after years of hoping. As I tell Evelyn, "After mama and papa were married, we were very happy. But, something was missing from our family." Usually at this point, she will interrupt with, "It was me! I was missing!" "Yes," I continue. "We wanted a little girl soooo bad. We waited and waited, but no Evelyn came. We waited some more, but still no Evelyn. We were very sad. Then, one day, I told papa, 'There is a baby growing inside of me.' and a few months later, you came out! We were so happy!" At this point, Evelyn usually chimes in, "We were a family!"

Oliver, on the other hand, came as a complete surprise. My sister figured out I was pregnant before I did. When the doctor confirmed my sister's hunch, I was floored. As I had with my daughter, I prayed for him...but the prayers were different. With Evelyn, I prayed for a happy, healthy girl...and I got her. With Oliver, I told God I would be happy with whatever I got. I remember saying it didn't matter if the baby wasn't healthy. I would still love it. Although, I added the caveat that I would like another healthy baby. However, I felt that I had been given perfection in Evelyn and didn't feel entitled to a repeat.

Before birth, Oliver loved to kick my hip. He'd get mad any time he got the hiccoughs and then, bam, bam, I'd get a good beating. If I got tired of his wild calisthenics, I could sing a song and he would calm down. He didn't like chocolate or cookies or sweets at all. He craved fruit, fruit, and more fruit.

Now, he doesn't have much energy. But, still, when he's awake he has a grip of steel. He has started lifting his head up and turning it. He likes to look at lights in the ceiling and at his mama's face. When I hold him, he turns his head towards my body. Everything he does taxes his strength..yet, he keeps going and he rarely complains.

As a mother, it is hard to relinquish control of my child. Every moment I spend with him is a gift. Still, I am grateful for the doctors, nurses and other medical staff who will take him away from me in order to give him back to me.

Like the dragon in traditional Chinese culture, I view my two children as powerful forces for good. They bring joy into my life and teach me about different kinds of strength.

Wednesday, December 24, 2008

snuggly warm

Oliver loves snuggling and I love holding his hand. I can't wait for Evelyn to hold him..and for him to hold her finger. (notice the beautiful blanket?)

Oliver's Christmas Eve


Oliver got a Christmas Eve bath this evening before we put him in his holiday outfit. I love to see him with all of his leads detached. He looks like a regular baby. We bathed him during his "awake time," between 9 and 11 pm, so we got to see his little eyes.

gratitude

During the past few days, I've been thinking about all of the things that have made this adventure easier for me. At first I thought I'd post a list. Then, I realized that the list would be too long. I got overwhelmed. I think I just need to start the list.

Some of the things for which I am grateful are obvious:
*wonderful, competent medical workers (doctors, nurses, technicians, physician assistants, social workers, etc...)
*distractions (knitting, books, the TV shows NCIS and House, crossword puzzles, visits from friends, phone calls)
*my supportive husband (who scratches my legs, tells me to take my pain medication, and bought me the gross grocery-store cupcakes that I craved)
* the generosity of family, friends and strangers (the Ronald McDonald House, cards from people I know and people I don't know, an anonymous gift certificate for the hospital cafeteria, a "my first Christmas" outfit donated by another family in the NICU, the teddy bear given to us by the Heart of Gold Charity)

Other things are less obvious:
* Finding personal connections to my doctors and nurses (one doctor is a friend of a friend, some of the NICU nurses are daughters of a friend, and my anesthesiologist visited me on many occasions before my surgery just to discuss fractals, the best chocolate in Milwaukee, and medical flukes)
* my current favorite pair of black pants that do not hurt my incision.
* the room service in the hospital (the food wasn't world class, but at least I didn't have to worry about it)

Finally, there is the one thing that has eased my mind the most. It has also caused me the most anguish.
*My mom left her home in RI and has been in WI for the past seven weeks taking care of my daughter and my husband. She is doing for me what I cannot do for myself. She is doing for me the one thing that matters the most to me. There is no one I would rather have teaching my daughter to see the beauty in the world. Yet, at the same time, I am jealous of all of the time she gets with my daughter, that I do not. I worry that Evelyn will love my mom more than she loves me. My mom, after all, is a lot more fun than I am. She lets Evelyn do all sorts of fun and messy things, like making egg noodles and cookies, and doing art projects. These are things I remember doing as a child. My mom lets Evelyn be a three-year-old.

Tuesday, December 23, 2008

surgery postponed

This afternoon, a member of the surgical team came and talked with me about Oliver's procedure tomorrow. I signed all of the consent forms and got a bit more nervous. This evening, Dr. Basir came by to let us know that the surgery has been postponed again. Now, Oliver is scheduled to go in on Saturday, the 26th, barring the arrival of a child who needs emergency surgery. Dr. Singh, one of the cardiologists, came in and explained that there are only two conditions that would require emergency surgery.

Kevin was rather short with the cardiologist, asking: "Doesn't every day the surgery is postponed, increase the risk of lung damage?" The cardiologist conceeded that yes, it does and addded that he had no consolation for us. However, the hospital has limited reasources and the surgical team felt that another baby was more critical. Dr. Singh assured us that if Oliver became critical, he would be the baby in the operating room. This didn't make Kevin any happier. "But we don't want him to become critical," he said.

I agree. Every day I go to see Oliver, his breathing seems a bit more labored, he has less energy, and his oxygen levels are lower.

Oliver update

Oliver now weighs nearly seven pounds and is taking all of his food by mouth. He still has the central IV (PIC line) but is receiving only enough fluids to keep the line open. The amount of oxygen in his blood ranges from the high 80's to the low 90's (percent oxygen saturation), which is good for someone with his condition. This morning's nurse (Jessica) said that there's no reason to worry unless it drops below 80.

He's currently on no medications, although he will be started on prophylactic steroids and antibiotics before he goes in for surgery. The steroids are to prevent swelling, the antibiotics, to prevent infection.

Dr. Basir, one of the neonatalogists, poked his head in this morning to tell me that most of the genetic testing has been completed. It looks like Oliver will get a clean bill of chromosomal health. His heart defect was just a fluke of nature, not a sign of something more sinister.

I love how he fits on my body, and how he gets so comfortable while feeding that he falls asleep at the breast. Of course, we have to wake him up to make sure he gets enough food, but still, it makes me happy to be his safe place.

Ronald McDonald House -- Milwaukee

We moved into the Ronald McDonald House, across the street from the Children's Hospital of Wisconsin, the day I got discharged. For some reason, I expected spartan accommodations. Ronnie's (as we've heard many people refer to the house) is anything but.

Here's the lobby (there are electric trains running on tracks beneath the tree):

And the game room:

And the play room:

And one of the kitchen/dining areas:


There are also a McDonald's Play Place, a TV room/lounge, and a solarium in the house.

In addition, various groups in the Milwaukee area have provided dinner or brunch nearly every day we've been here. We feel well cared for.

Monday, December 22, 2008

a three-year-old's grief

My husband and my Aunt Mary both drove to our house this afternoon. We celebrated an early Christmas -- told the Christmas story, said a prayer of gratitude and listened to Christmas music while we opened presents.

Then, around 4:50 Kevin and I packed up and drove back to Milwaukee. Evelyn kept asking, "Why are you leaving? Why does Turnip want you? Why can't I come?"

I held her and told her she could come see us on Christmas. I asked her why she wanted me. Her response: "You make me happy."

"Well," I said. "That's why Turnip wants me. I make him happy, too. I will see you in three days."

"I won't want you in three days," said Evelyn. "I won't like you."

"That's o.k," I said. I will still love you. You are my dear one."

As I held her, I prayed for a way to comfort her.

Just then the doorbell rang and the mailman dropped off some packages. I recognized the Amazon box and told Evelyn to come sit on my knee. I told her I had one last present for her. I told her it was something special for her to play with while her papa and I were gone.

When we opened the box, she saw a doll family: mama, papa, big sister and little brother. The mama and papa have hair like Kevin and me. The big sister has blonde hair like Evelyn. The little brother has brown hair. We talked about how they look like our family.

"I can think about you when I play with them," said Evelyn. "Can papa put the house together?"

It turned out that the dollhouse had way too many screws to assemble before we returned to Milwaukee, but Evelyn seemed happy with her miniature family. I miss her.

Sunday, December 21, 2008

daddy duty

On Saturday, Kevin drove me home and then turned right around and made the two-hour return trip. After six and a half weeks away, I needed to see my daughter. Kevin's doing daddy duty with Oliver--feeding him, holding him and reading him articles from academic journals.

I love playing with my daughter. The Heart of Gold Charity gave our family a care package. It included a teddy bear with a broken heart. We gave it to Evelyn and told her that the bear was here because Oliver couldn't be with her. She has abandoned her two favorite stuffed animals (Zebra Man and Miss Monkey) and has been carrying Teddy Graham with her everywhere. She feeds him, changes his diaper, burps him, and puts him to bed. She has taken him on a picnic, taken him into her bed and taken him to the doctor. It's quite sweet.

I just showed her the Heart of Gold website. She wanted to know if Braden's family had given us his Teddy Graham. We decided that Braden has Teddy Graham's sister.

Christmas Eve


Surgery has been postponed again. As of yesterday, Oliver's operation is scheduled for 7:40 am on Dec 24. I'm starting to get scared. It seems impossible that a baby who looks so perfect has something so dreadfully wrong inside of him. When I think about Wednesday, I start to shake.

Thursday, December 18, 2008

surgery postponed

It sounds as if Oliver will not have his surgery until Tuesday. Another baby just arrived who has a more severe and less stable condition. It's nice to hear the little lover is "more stable" than someone.

We picked a name...

While I know many of our family LOVED the idea of Turnip remaining a root vegetable, Kevin and I have decided to give him a more formal name. We have "settled" on many names, only to reject them a few days later. Yesterday, we picked a name, and filled out the form to get a birth certificate. Today, while we were sitting in Turnip's room, I looked over at Kevin and asked, "What about Oliver?" Kevin and I had talked about Oliver before, but I didn't like it. However, during the past few days, I've been calling Turnip my little lover. Needless to say, we changed the name on the birth certificate and are happy to announce the arrival of "our little lover," Oliver Kevin.

Wednesday, December 17, 2008

Turnip's care

Turnip got a PIC line today--basically, a long-term IV. We had to leave while they inserted it. It goes in on his right ankle and ends in one of the major blood vessels right near his heart. He has to have it in for his surgery. Because it is in such a big blood vessel, the doctors can give him higher drug doses and more concentrated nutritional supplements after surgery.

Right now, the docs are allowing him to eat orally and he's doing so well. He eats like a champ. However, he does tire easily. To make sure he doesn't loose any weight, we are supplementing his breast feeding with formula and expressed breast milk.

He's tentatively scheduled for surgery on Monday. I'm surprisingly not too worried about it. Just like I wasn't worried about the PIC line. He needs the PIC line in order to get the surgery and he needs the surgery to live. Sure, there are risks associated with either procedure, but not having them done is a death sentence. So, go for it.

We also think we've picked out a name. Kevin and I will let it sit for another few days before making a grand announcement, but I think its a done deal.

C-section oddities

So, the C-section (or at least my memory of it) was no where near as bad as I had feared. I don't hurt nearly as much as I expected to. In fact, I hurt a lot less than I did after giving birth vaginally. I don't envy people who go through labor and then have an emergency C-section. They get the worst of both worlds.

Three odd things:

1) My legs itch. They itch a lot. And getting scratched feels better than ANYTHING I have ever experienced. Kevin, my scratcher-in-chief, gets the funniest looks on his face as I experience pure ecstasy.

2) The worst pain was on the second day after surgery and it was in....any guesses?
.
.
.
.
my shoulders!!!!

Apparently, when you have abdominal surgery, you can get air trapped inside. The air forms gas bubbles which hurt! Fortunately, the nurses got me some good drugs (Tocoradol???) that killed the pain.

3) Once again, my legs and feet are swollen beyond recognition. This happened with my daughter's birth, as well. I didn't swell up during pregnancy, but the day after giving birth, I began ballooning out. Now, I can barely fit into my flip flops. In truth, I can't fit my feet into my flip flops. The nurses say that the swelling will go down soon. I sure hope so. It feels funny.

C-section

Today, the doctor who delivered Tunip came by to check on me. According to her, I had a standard C-section with no complications. The accreta and vasa previa turned out to be false alarms, as did the lobed placenta. I didn't even need a transfusion.

And this doctor (Tracey Tomlinson) had prepared for all eventualities. She had 4 units of blood on hand, two other surgeons in attendance, two IV lines in and interventional radiology on call. I'm glad I didn't need any of it. Kevin says the only comments he heard during the surgery were, "Oh, that's nice," and, "Oh, that's better than we thought." I'm grateful for the doctors' preparation. I'm also grateful it wasn't necessary.

Of course, I had things to say before my wonderful anesthesiologist (Tom Siker) gave me the good stuff. Thankfully, I don't remember much beyond crying as I climbed onto the operating table. My nurse asked, "What's wrong? Talk to me." Dr. Siker, who had visited me four or five times before the delivery, looked at her a bit cross eyed and said, "She's scared. Let's get on with it." I'm so glad he knew where I was coming from. I have very vague memories of yawlping when I got the epidural and the catheter. Kevin says I yawlped very loud. I also have vague memories of someone tugging on my stomach. Beyond that, nothing. Good thing, too. Apparently, Turnip came out a bit grey. He had an initial apgar of 1, but was up to 9 by the second check.

Tuesday, December 16, 2008

Welcome...


Turnip joined us. He came in at 6, 6 and 19 1/2 inches. He looks like a perfect little baby. There weren't any problems and mama is doing well. Surgery will likely be early next week.

Friday, December 12, 2008

distraction vs. denial

Distraction no longer works. So, I've resorted to denial--I don't try to think about other things. I try to think about nothing. It's really quite simple. I have been watching non-stop cop shows, reading fantasy, and knitting. I've also had a few visitors and phone calls. Visitors and phone calls make it much harder to maintain my denial. I prefer the TV and books--a complete divorce from reality.

Tuesday, December 9, 2008

stupid jr. doctors

Today, for the first time, an anesthesia resident came to see me all by himself. Five hours later the nurse comes in and says she's been asked to give me an IV. When I ask, she says the resident (read doctor in training) has asked for it. I say, "no." I've been here for four weeks without an IV. The fully certified anesthesiologist and the fully certified OB are aware of it, and in fact ordered it thus. I'm not getting anything new unless one of my surgeons comes in and tells me it is absolutely necessary. Over zealous residents be damned!

I'm so glad I have nurse Jill today. She's kind of sassy. She said she'd page my perinatologist and wait to put anything in until after the doc called back.

And I was having a good day before these shennanigans. Now, I'm right back where I was yesterday: shaky and upset. Its really hard to ignore my circumstances when I'm emotionally worked up.

Monday, December 8, 2008

one more doctor

Today, a doc from interventional radiology visited to talk about catheters. In the off chance that I have placenta accreta, my OB wants to have catheters in place to stop blood flow to my uterus. With PA, there is a risk of uncontrollable bleeding. If I had the catheters in place, the doc could inflate them and stop the bleeding.

The radiologist said that they only do this in 1 or 2 high-risk pregnancies a year.

That's even fewer than the number of TA repairs the docs do in the Heart center (6 per year).

What a mess.

names, again

We're still working on this. We've come up with lots of funny options, some obnoxious options, and a few that we're still considering. Current contenders:

James Paul
James Roosevelt
Eli James
James Thomas

All of the names have family connections.

ultrasound

Today, Turnip had his last ultrasound before birth! He wiggled and breathed and did all of the things they check for in a biophysical profile (BPP). No size estimate. But, he did wave at us and he has turned head down. Now, if only the placenta wasn't blocking his way out. Oh, well! Maybe he'll calm down a little now that he's headed for the exit.

Friday, December 5, 2008

echocardiogram

Turnip had his last in-utero echocardiogram yesterday. The doctor said nothing has deteriorated. His truncal valve is a bit leaky and has some trivial to mild blockage. However, his pulmonary arteries don't look overly small and the pattern of blood flow to his brain looks normal.

The doctor said she didn't see any major risk factors that might complicate his surgery, but warned us that everything can change after birth. She predicted that he won't look particularly sick at birth and that he will probably not need a breathing tube before his surgery. She also noted that he'd most likely have the surgery before Christmas and then require a three-week in-hospital recovery period.

He won't be able to eat, or have a feeding tube, until a few days after the surgery. He'll get his nutrition by IV, insted. I'm not sure what to do about breast feeding. I'd hoped to, but I'd have to pump to keep up my milk supply while he's on the IV...and I don't know how practical that will be given our circumstances: recovering from a C-section, living in the Ronald McDonald House, traveling back and forth to visit the hospital every day, trying to reconnect with my daughter. I think I'll just play it by ear.

Monday, December 1, 2008

wager won

Kevin and I had a bet going on how big Turnip would have grown by today. We were both off by quite a bit...but I was closer!!! Turnip now weighs in around 5# 14 oz (with a pound margin of error) and has a 33.2 cm head circumference (which means his head is 3 weeks ahead of the growth curve. It's the same size as the average baby at 38 weeks gestation). I'm glad this baby is taking the fast and dirty way out of my body. If he keeps growing at the same rate and if he makes it another two weeks, he should weigh around 7 # at birth. Not bad. Not bad at all.

He was also breathing up a storm (well, practicing) and wiggling like a maniac for the ultrasound. He even stuck his tongue out at us and blew us a few raspberries. And, best news of all: he has a chin. My daughter was a chinless wonder. Well, maybe she had a chin when she was born, but it was barely noticeable.

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.

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}

Tuesday, September 30, 2008

next check up

The folks from Milwaukee called today. Kevin and I will go to the Herma Center on the 27th of October for Turnip's next echocardiogram and growth ultrasound. We'll meet their cardiologist, one of the doctors who may deliver Turnip, and a social worker. We'll also get to schedule the induction date. The woman I spoke with said I get to have some say as far as dates go. I guess that's a no brainer--Dec 31, here we come!!!!!!

Monday, September 29, 2008

Badger Care

Today, I signed us all up for BadgerCare: Wisconsin's version of Medicaid. I signed up to make sure we don't run into problems once Turnip begins treatment. Our private health insurance has a lifetime cap of $2 million per person. If Turnip's surgeries are uncomplicated, I estimate he could hit that cap around his 3rd birthday. If he struggles, he could max out much earlier. Medicaid will pick up any costs above and beyond what our insurance will pay. According to the people I spoke with today, Medicaid has no lifetime spending cap.

Talk about sucking up the pride. I'm on public assistance.

Sunday, September 28, 2008

warning: religious

This post has been moved to my personal blog.

Saturday, September 27, 2008

Tell all

Kevin and I have started telling people in Wisconsin about Turnip's problems. Of course, my Aunt Mary already knew and our religious leader knew. Yesterday, Kevin told his boss and I told a woman I've gotten to know through church.

I've been dreading, not so much the telling, but the re-telling...especially at church. In my church, there is a lot of emphasis on looking out for each other. This has a few outcomes: some wonderful, some I find a bit intrusive. If a crisis occurs, the entire congregation will mobilize to help. However, in order to mobilize a congregation, the congregation needs to know about the crisis. As a result, there is a lot of chatter about the personal struggles and problems of the congregants.

I fear that as soon as we make this knowledge public, I will get bombarded with questions, comments, and condolences...from people with whom I do not feel close. People who have heard about our situation second- or third-hand and feel compelled to respond.

This is the price of being part of a community. You are PART of the community. You cannot control how other people respond. You can only let other people in. In my life, I have found much more joy in letting people in than in keeping them out.

Friday, September 26, 2008

good day

Today, for the first time, I was able to imagine playing with Turnip. Before dinner, Evelyn went out in the front yard to play with our next-door neighbors. Watching them all running and laughing, Turnip finally became a person instead of a problem....at least for a moment.

Wednesday, September 24, 2008

ghost hearts

Today I read an interesting article in Popular Science. A scientist in Minnesota has brought the hearts of dead rats back to life. Now, she has begun trying to do the same with pig hearts. Her research holds promise for patients with TA, not because they need new hearts, or rat hearts for that matter, but because of her elegant technique.

According to Popular Science, Dr. Taylor kills all of the living cells in a heart. Then, she replaces them with living cells from a second animal. The new cells move into the "ghost heart" and start dividing. Within a few days, they start beating. Within a week, the entire heart has revived--but with a twist. Now, all of the cells are from the second animal.

Dr. Taylor has used the same technique to revive a dead aorta (one of the major blood vessels leaving the heart). If an aorta, why not a pulmonary trunk? If an entire heart, why not a heart valve or two?

Turnip will have repeat open heart surgeries because he will outgrow the pulmonary trunk the surgeons give him after birth. This replacement part will be dead. It will not grow as Turnip grows. If, however, a pulmonary trunk could be revived using his own cells, then, not only would it be alive, but it would also grow with him...and relieve the need for re-operation.

The bad news: Dr. Taylor has only revived rat hearts---not human hearts. Human clinical trials take quite a while to get approved and then another long while to run. This will not benefit anyone this year, but maybe in five years--if the human trials work out.

Still, I think I'll read Taylor's research in Nature Medicine.