Thursday, May 24, 2007

Wild Thing is 8

Wild Thing turned 8 on May 14, 2007. He is a typical second-grade boy: bright, goofy, a happy-go-lucky kid. He is also saturnine and destructive. He is a typical middle child . . . alternately a peacemaker and a troublemaker, alternately hardworking and unfocused, sometimes the victim and sometimes the aggressor. Considering his tenuous start in life, he is entitled to be all these things.

He loves baseball and most sports. He is destined to be a runner: this kid can run all day long and not get tired. He is a pretty good swimmer and had a great attitude when he participated in the school's swim club last year. Unfortunately, he could not swim this year because of the homework load. Academically, he is right in the middle of the pack, which is fine. He excels at his work when he loves the subject matter. He is slower than a Galapagos tortoise when he is not interested in the work. WT is a classic Taurus through and through: patient, kind, determined, warm-hearted – but also stubborn, possessive, indulgent and greedy. WT still loves to play with his stuffed animals and Rescue Heroes. Moose willingly goes along with these grand schemes. Wizard will occasionally deign to participate but usually on his terms, which are decidedly unilateral. WT and Moose love to play together outside, riding bikes, climbing trees, digging up what is left of our landscaping. WT loves picking the bougainvillea flowers and bringing them to me as presents. He is forever exploring behind the bushes and in the "forest" behind our house. He has several secret hiding places to which he rapidly retreats when he hears me hollering for him.

WT is absolutely my son. We are cut from the same cloth. I suspect that is why we butt heads as often as we do and why he gets along so much better with his dad than me. But, I love him and admire him for his passion and fortitude.

Although several of you know the high drama surrounding his conception and birth, I will share all the ugly details here. I will preface the story by saying that WT is, first and foremost, a testament to modern medicine. My father calls him a wunderkind.

What follows is no fairytale. It is not for the faint of heart or stomach. If you've had enough, feel free to stop reading.

*** *** ***

I had two miscarriages in 1998, one in January and one in September. After the second one, my obstetrician, Dr. J, a specialist in maternal-fetal medicine (high-risk OB), ordered a slew of blood tests to find out why. She recommended we wait about 3 months before trying to get pregnant again. That didn't quite pan out because I got pregnant at the end of October 1998. My EDD was mid-July 1999.

I needed to see a high-risk OB because I developed a severe case of a variant of pre-eclampsia during my pregnancy with Wizard. The disease is called HELLP Syndrome. The acronym stands for:
H hemolysis
EL elevated liver enzymes
LP low platelet count

HELLP syndrome occurs in approximately 10% of pregnant women with pre-eclampsia or eclampsia. Severe cases involve high blood pressure and protein in the urine and can progress to seizures (eclampsia). Severe cases are life-threatening to both mother and fetus. HELLP syndrome is associated with more serious cases. It may occur long before a pregnancy reaches term. Many women have high blood pressure and are diagnosed with pre-eclampsia before they get HELLP syndrome. [from the National Library of Medicine]

About 25% of pregnant women develop pre-eclampsia, also incorrectly known as toxemia; it is basically pregnancy-induced hypertension. Approximately 0.2% of pregnant women develop HELLP syndrome. I had a 4% chance of developing HELLP Syndrome in a subsequent pregnancy.

The early part of WT's pregnancy was uneventful. No problems with blood pressure or gestational diabetes. Based on my experience with Wizard's pregnancy, I was looking for things to worsen around my 29th week or so. As I did with Wizard's pregnancy, I opted to have an amniocentesis with WT. WineGuy and I were fully aware of the risks of the procedure, but we felt that the benefits outweighed them. The procedure itself went well; the baby looked good. I rested for a while after the test, and then I picked Wizard (then 2.5 years) up at nursery school. We went to the grocery store later that afternoon, and I felt a gush of fluid between my legs. I thought that I forgot to go to the bathroom, but when I ran to the restroom I didn't have to go. Much later that evening when WineGuy and I were going to sleep, I felt another huge gush of fluid.

Panic time! Two amniotic fluid leaks in one day, following the amnio is a bad sign. WineGuy called Dr. J, who ordered us to the emergency room. We woke Wizard and dragged him, in his pajamas and winter boots, the 19 miles to the hospital. [N.B., the closest hospital was 2 miles away, but we lived in another town 19 miles from the major medical center where WG worked.] Dr. J took us up to her office for an emergency ultrasound. Not good: I had lost a significant amount of amniotic fluid, and the baby was in danger. Dr. J sidelined me immediately: complete bedrest and gallons of fluid everyday.

Because I couldn't rest and take care of Wizard, I hired Nanny, whom I had met the previous summer. She had just left that job and was available, thank G-d. Nanny took great care of me and Wizard for a month. By the end of February, my amniotic fluid level had returned to normal levels, so Dr. J removed my restrictions. I said goodbye to Nanny, but kept in close touch with her just in case. Right around that time I hired a new housekeeper, Amish Anna, who would end up working for us until we left Pennsylvania. She kept a close eye on me, too.

I was feeling pretty good in the early spring of 1999. I was having typical swelling of my hands and feet. My carpal-tunnel syndrome returned, but I wore my splints when necessary. We went away on a couple of trips, and I remember being really miserable at Jazzfest that year: swollen, out of breath, fatigued.

Week 27 arrived; my blood pressure was elevated, and I had protein spilling into my urine. That meant my kidneys were having problems. A 24-hour urine study revealed a marked decrease in kidney function. Further blood tests over the next week showed that both the pre-eclampsia and HELLP syndrome had returned.

Dr. J ordered me into the hospital at 29 weeks' gestation with the intent of delivering me as soon as she could stabilize me. Being hospitalized in Labor and Delivery – because of high-level monitoring and nursing care – tortured me. I remember lying in that damn, hard bed, completely whacked out by the magnesium sulfate (a smooth muscle relaxant used to treat PE and HELLP), listening to those women howl with labor pains. I was desperately trying to eke out just a little more womb-time for WT. Dr. J warned me if my condition worsened or did not stabilize she would deliver the baby to save both our lives. So, I laid there, sweating and feverish in a 68ยบ room. The medicines made me feel crummy, but they worked. My blood pressure went down. My kidneys started functioning better, and my liver enzymes came down. The saddest thing was spending Mother's Day in the hospital. WineGuy fought me about bringing Wizard to see me, but I insisted. My MIL had come into town to help at home, and she convinced WineGuy to bring Wizard for a short visit. I was overjoyed to see my boy and hold him tight. I was sad to send him home so quickly.

A couple of days later, Dr. J said I was well enough to go home as long as I did nothing. WineGuy drove me home on a sunlit spring day. The air was filled with the scent of new-mown grass and flowers. I reveled to be outdoors for the first time in a week. I went home and stayed home. By that time, Nanny was able to come back to work for us. She and Amish Anna took wonderful care of us all.

Three days later, my symptoms returned: my belly hurt, my back hurt, everything was swollen badly. WineGuy rushed me right into Dr. J's office. She took one look at me and said, "We're delivering you TODAY." They wheeled me from obstetrics, through the locked psychiatric ward, right into Labor & Delivery. The descent into Hell began with another OB who was on-duty that day. I knew him and didn't like him, especially when he shoved his big hands inside of me trying to put a lead on the baby's head. That didn't work, so they tried external monitoring. I was so overweight and swollen that they could not get good readings on the baby that day. They tried everything to induce a vaginal birth because I really didn't want a C-section. However, as the day progressed, the baby's condition worsened: heartrate decelerations, poor movements, etc. I was rapidly deteriorating, too. Dr. J was on the phone all day with her mentor, a leading researcher in PE and HELLP. His final words were, "Get the baby out."

Around 6:30 p.m. on May 14, 1999, Dr. J came to WineGuy and me and said that induction failed and she needed to get the baby out. I turned to WG and agreed to the surgery. And all hell broke loose. I have never seen people move so fast. Within seconds, I was rolled down the hall to an operating room, hearing emergency pages for anesthesia and pediatrics to L&D: "Anesthesia, 99 to Labor and Delivery! Pediatrics, 99 to Labor and Delivery! Neonatology, 99 to Labor and Delivery!" 99 was "stat". I remember WineGuy taking the glasses off my face. I remember the anesthesiologist placing the mask over my face and saying, "Count back from 100, Mrs. WineGuy." 100-99-98 . . . the last thing I remember is the smell of the oxygen. And then there was nothing.

According to what WineGuy reluctantly told me and the hospital reports I read later on, I was in surgery for 2 hours. Dr. J got WT out within 10 minutes of starting, and peds rushed him down to the Neonatal Intensive Care Unit. I was in such bad shape that they had to give me 2 units of packed cells during surgery. When I finally woke up, I couldn't keep a thought in my head. I remember asking WineGuy several times what we had. Once my brain processed that information, I asked if he was alright. WineGuy told me the baby was alive and down in NICU, that the entire neonatology team was working to stabilize him, and that he was on a ventilator.

Into the next circle of Hell. On the day after surgery, the nurse got me into a wheelchair. WineGuy wheeled me down to NICU to see my son. It was awful. He weighed 2 pounds, 6.5 ounces at birth and was 15" long.* This precious miracle was in a diaper the size of my palm. He had tubes in his nose, leads on his chest, wires hooked up to every part of his body. He was wrapped in plastic wrap and on a warming bed just to keep his temperature stable. He wore a mask over his eyes to protect them from the special bili-lights for jaundice. I could not touch or hold my child. They allowed me to talk to him, but all I could do was cry. "What have I done to him?" I wailed. I was inconsolable. WineGuy had to take me back to my room.

The next day was worse because I had to get out of bed and on my feet. There is no worse pain than getting up after abdominal surgery, except for when they pull the drains out of the incision, maybe. The longer you wait the worse it is; I was two days post. The size 0 nurse kicked my sorry behind out of bed and told me to start getting better for my kids. She was right, but I nearly passed out. I stayed in the hospital for the remainder of the week, and WineGuy brought me home. I was thrilled to be with Wizard again, but we did not tell him about his brother. Frankly, we didn't know whether the baby would make it. Wizard only knew that I had gotten sick again, had an operation, and was home.

I relied on friends and acquaintances to take me to the NICU until I was cleared to drive. I made daily trips to the NICU to see the baby. I would talk to him and sing to him. It was all I could do. When WT was about a week old, I recall cornering the Chief of Neonatology and asking him whether I needed to be prepared to bury this child. Chief told me that this kid was a fighter but that we had a long road ahead of us. At that point I was ready to give the child his English name. His Hebrew name would have to wait until he was well enough to be circumsized.

Thus began WT's medical journey. He was on the ventilator for three weeks. He developed necrotizing enterocolitis, a common preemie intestinal disease which can kill the intestines. He started to learn to nurse but was pulled off oral feedings when the G-I problem re-occurred. He had echocardiograms to check his heart and scans to check his brain. He clotted off at least 6 different IV lines, including a Broviac cut-down that they tried to place in his femoral artery. WT still bears this scar today on his thigh. His medical chart was 2 inches thick and growing daily with all the medicines, nutrition, and supplemental therapies. Occupational and physical therapy started working with him right away.

Finally, when WT was about 5-6 weeks old, he finally started to hold his own. They moved him from the higher level of care into the NICU step-down unit. My dear friend, KellyB, a phenomenal NICU nurse, took care of him or looked in on him daily. She also threw me out of there when I had major cabin fever. Things started to look better, and the doctors were talking about releasing Wild Thing to go home. (It was only then we told Wizard that he had a baby brother.) The last thing WT needed before going home was surgery to repair bilateral inguinal hernias, which are common in preemies.

Wild Thing came home in July 1999. Nine weeks and nearly a quarter of a million dollars later, we brought our second son home to his big brother. He came home right around his original due date, and the fun began. There were daily visits to the neonatology clinic for feeding problems and weigh-ins. There were weekly visits to OT to help him reach his developmental milestones. There were monthly visits to the pediatric ophthalmologist for the retinopathy of prematurity WT had. There were the usual shots and doctor visits, but all with the hypervigilance that preemies require. This went on for months and months. I recall saying to someone, "I look forward to the day when I don't have to drive (the 19 miles) to Hospitaltown." But WT was healthy, and he was growing and soon he was a year old.

The neurodevelopmental pediatrician tested WT at 12 and 18 months and found expectable delays but no cognitive deficits. That's the most astounding thing: his brain is fine, and he's smart. WT finally "caught up" physically and intellectually. He may never have the natural strength that Wizard and Moose do, but he has perseverance to which they should aspire.

Wild Thing wants to be a doctor someday. Considering he is the family's medical consumer, it is appropriate. We gave him scrubs and a stethoscope for his birthday. Look at that happy face. "Paging, Dr. Wild Thing!"

Happy Birthday, Wild Thing! You are a wild and wonderful boy. May you live a long and healthy life!




*Apparently, he stopped growing at 29 weeks; he was listed as IUGR (intra-uterine growth retardation). Many months later, when I was brave enough to read the surgical pathology report, I found out that I had a placental infarct, i.e., 25% of WT's placenta died off during gestation. I don't know how or when it happened, but this adversely affected his growth and nutrition while he was in the womb.

7 comments:

Christina said...

Well, even though I knew the story, I read every word. I am now wiping away tears here at my desk. So many milestones in his life that I know are etched forever in my brain - meeting him in Boston, that wonderful picture of WG holding him from that trip, your visit to San Diego when he rolled all over my floor and tipped over the potted plant (seemed mighty strong and developmentally on par back then to me!!), visiting all of you a few years ago and seeing that sparkling personality and smile in person. Well, he is just a treasure of course. Happy Birthday Wild Thing!!

Rambling Mom said...

I could only read it because I knew it was a happy ending.

Yeah - he better go into medicine, he owes you for all those birth related expenses :} :}.

(And at an interest rate of 8.5%, compounded annually ....)

What a sweetie.

Squib said...

I can't believe WT is 8. I remember clearly lighting a candle for you and the baby (now known as WT) and Fly Guy asking me what I was doing. He was heading out to a Freemason meeting and he said he would ask his masonic brother's to pray for you and the baby. It is such a clear memory it could have happened yesturday. I love reading updates about WT knowing what he has been through.

Robin said...

Happy Birthday to Wild Thing!

I'm glad I knew ahead of time there was a happy ending to this story. Otherwise, I might have been afraid to finish.

Sock Girl said...

Happy Birthday Wild Thing!

cricket said...

Again I remember what a miracle WT is!

Happy, happy, happy birthday to your wonderful middle child!

Mom of 4K said...

My heart is doing a little dance and melting at the same time. It remembers the ups and downs of that summer...He is such a sweetie. I need to come see those boys again soon.
Hug Wildthing for me :)