Wednesday, December 31, 2008
Tuesday, December 30, 2008
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.
Monday, December 29, 2008
I was happy to go work out tonight at the WAC, nice perk for those at Ronnie's.
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
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.
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.
Saturday, December 27, 2008
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.
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.
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.
Jesse has been napping. I'm watching the movie Word Wars on Netflix. It's about Scrabble players and tournaments.
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.
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.
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
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.
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
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
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.
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
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.
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.
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
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
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.
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
Wednesday, December 17, 2008
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.
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?
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.
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
Friday, December 12, 2008
Tuesday, December 9, 2008
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
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.
Friday, December 5, 2008
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
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.