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

video

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.

video

Friday, December 26, 2008

last day in the NICU


w
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

video
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.