Christmas 2009

Psalm 118:17, "I will not die, but live, And tell of the works of the LORD."

Christmas Eve the night before had been a wonderful time of memory-making. We had gone to the Harned's and watched Isaiah, Dell, and Logan sing Jingle Bells while loved ones passed Timothy around. He slept contentedly in Matthew Stock's strong, secure arms for half the night!

I don't remember much about Christmas morning... I know we opened presents and were preparing to drive to San Diego to have dinner with my parents and grandparents. On a whim I decided to change Timothy's shirt to a "My First Christmas" tee he had gotten from Mary Ann and Larry from across the street. When I undressed him, I noticed with each breath, his entire chest caving in. "He's okay... right?...no, that just doesn't look right," I thought. I put the shirt on, then lifted it up to look again. No, it didn't look right.

I called the Kaiser nurse, who told me to call 911. I was skeptical. "Won't they just drive him to the ER?" I asked. "Yes," she said, so I thought, no big deal, he's not dying, we can just drive him ourselves. Shannon was faster at getting ready, so I figured he could get a head start by driving Timothy there first. Then we wouldn't have to wait too long. We weren't in a huge hurry.

Shannon got ready and took Timothy to the Kaiser Anaheim ER while I packed up the car for my parents' house. I assumed we would be at the hospital for a few hours, they would discharge Timothy, and we would drive down after that. I dressed up Isaiah in the special Christmas outfit Dellene had gotten him, and he looked adorable. I snapped a couple of pictures of him then headed off to the hospital.

When I walked in, I saw the ER pediatrician, Dr. Murtari, pacing anxiously while a nurse kneeling down next to Timothy's bed tried again and again to get an IV in his foot. There was blood on the sheet where she had failed to insert it in the other foot. Dr. Murtari firmly and urgently told the nurse that she needed to get the IV in. He explained to me that they were going to inject Timothy with a steroid to reduce the swelling, which he suspected was compromising his airway. "Is he going to be okay?" I asked. "He needs to respond to the steroid," was his answer. Timothy cried furiously with each prick. Nanette, one of the NICU nurses who had cared for Timothy after his surgery, heard him and stopped by to help. At long last the IV was in. "I prayed," said the nurse who did the job. "When your husband told me about the hygroma, I suspected that was the problem," said Dr. Murtari. We are going to do a CT scan on him shortly to see if this is the case." "How long would he have made it if we hadn't brought him in?" I asked. "He probably wouldn't have gone much longer than a couple more hours like that," he replied. Slowly I started to understand that Timothy's condition was much more serious than I had realized.

At about 2:30 I started to make phone calls. I let my parents know that we probably weren't going to make it. My mother had made Christmas dinner for all of us, and my grandparents, and my grandmother had broken her arm on Christmas Eve and also wasn't coming. Christmas dinner hot and ready for an empty house! The Harned's offered to come pick up Isaiah, which they did. By God's grace, Timothy's breathing eased up after the steroid was injected and he slept peacefully for several hours, despite us not being allowed to feed him.

His CT scan showed that, indeed, the cyst was growing back and blocking his airway. The plan was to intubate him and transport him to Kaiser Sunset, where we thought he would be receiving another resection surgery. After several hours of waiting, they wheeled me, with Timothy on my lap, to the OR for the breathing tube to be placed. Timothy woke up and started to cry as he saw the lights passing by over his little head. I will never forget his cry, or the look of fear on his face as he sucked on his little blue fish pacifier. It was as if he remembered being wheeleed in this way before - did he know from his first surgery? Whatever the case, even at only 6 weeks old, he knew something was not right.

The medical transport team from Children's Hospital Los Angeles, and the anesthesiologists and ENTs on staff at Kaiser Anaheim, let me kiss him goodbye since we were not allowed in the OR with him. A look of fear crossed his face as if to say, "Why aren't you coming with me?" Then the doors shut behind him and Shannon and I were alone. He was put under general anesthesia for the breathing tube and did not wake up again until after the New Year.

Shannon and I waited in the X-ray lobby for them to tell us when to make the trip up to Hollywood. While we waited, we saw Dr. Lau and his wife delivering Christmas cookies to friends. We talked, but I'm not sure what we really said... I think Dr. Lau didn't know what to say...

We ate Christmas dinner in the hospital's basement cafeteria. Shannon said he was relieved, that he had been worried about Timothy's breathing for some time. I had been in denial, until earlier that week when Shannon had said he thought it might be growing back. "I don't think we're out of the woods yet," he had said. He was right.

At long last, the ambulance boarded Timothy after a chest X-ray to verify the correct placement of the breathing tube. We tried to follow the ambulance for some time, but lost it after parking one of our cars at the Holiday Inn in La Mirada. After a ton of traffic and a detour around Los Feliz due to some kind of event at Dodger Stadium, we finally completed the long drive up to Kaiser Sunset. This would be the first of many in the following weeks...

It was a cold night and I hadn't dressed for a long walk outside on Sunset Boulevard. We navigated the maze of hallways, elevators, and corridors with some help from a security officer and finally found the PICU on the 5th floor. There was Timothy, drugged to sleep with a tube in his mouth. I felt the same numbness I had on the day of his birth. It was close to midnight and we were told to come back in the morning to meet with the surgeon, who would go over Timothy's options.

And that was our Christmas, 2009. Someday I plan to show this account to Timothy so that he can understand how God intervened that day to save his life. Christmas will from now on be a day of remembering God's hand in protecting our son. Had God not intervened, Timothy might have stopped breathing on the way to San Diego in his rear-facing car seat, and we would have just thought he was asleep. God was gracious to us in sparing him when we failed to call 911 as directed by the nurse. God has a plan for Timothy, and He wants him here on this earth to bring glory to Him. I can't wait to see what He has in store for Timothy's life.

Isaiah 44:5, "One will say, 'I belong to the LORD..."

November 7, 2009.

It started out like any normal day, if there is such a thing for a pregnant woman three days past her due date. I went to the pool, came home, showered, and started getting ready. Around 10am I noticed my vision start to blur, so I checked my doctor's notes, which said to call if this happened. I decided to wait 15 minutes to see if the blur went away. It did - and then the contractions started. I got out the timer: 3 1/2 minutes apart. After about half an hour, I called labor and delivery, and they said to come in. I called Shannon, who had just arrived at work, and asked him to come back home. Allison came to pick up Isaiah. "When you come back home, you'll have a little brother," I told him. Little did I know that Timothy wouldn't be coming home for another two weeks.

Shannon drove me to the hospital and walked me to the Labor and Delivery triage window. "Can I help you?" the nurse asked. "We're having a baby," Shannon replied. I remember thinking, how strange, why else would a 9-month pregnant lady be standing there with her husband? Anyway, once inside, they strapped me to a monitor. Just like my last labor, the contractions made me feel like I wanted the barf bowl, so I asked for it, but never actually used it. After about 10 minutes in triage the nurse checked me and I was already at 8cm. The rush began to get me to a delivery room. "You may not have time for an epidural," the nurse said. I panicked - labor with Isaiah had been horrible and I was scared. Then the song came into my head: "God is so good, God is so good, God is so good, He's so good to me." I kept it in my head during the whole labor.

Once in the delivery room, the nurse gave me two shots of fentanyl, which made me dingy but didn't do much for the pain. The anesthesiologist was brought in and did his job fast - thank God for the epidural. They stuck my arm several times and finally got the IV in. The nurse checked me again and told Shannon to RUN out to the car and get the camera. By around 3pm they were telling me to push.

"I can see his hair!" the resident said.
"Push!" said the nurse midwife.

In a just a few pushes he was out. I heard a weak cry, then...

"What's that?"
My husband looking white as a sheet.
"Did this show on the ultrasound?" "No."
"Take him to the NICU?" "Yes."
"Skin to skin okay?"

They laid Timothy on my stomach... and there was my baby, but... "What's wrong with his face?" I asked. At first they didn't say anything to me. "Maybe they can drain it," one of the nurses finally said. Then they whisked him off to the NICU. I had just delivered my son, and minutes later the room was strangely quiet.

After a little while the nurse sat me on the toilet - I had to pass the urine test before I could go to a postpartum room. "Can you sit there for a minute?" she asked. "Sure," I replied. Then, "Is it normal for me to feel nauseated?" "Are you going to faint?" Tunnel vision... then smelling salts, a cough, and wide awake. I don't know if it was from loss of blood or emotional shock...

Once upstairs, they told me they did not know what Timothy's tumor was, and that they would be doing a CT scan on him the next morning. How was I supposed to sleep that night? Shannon wheeled me down to the NICU where I got to hold Timothy for the first time. He looked like a monster. All I could think was, they must be able to just go in and remove it. Then he will be fine, right? I hadn't cried yet. I hadn't felt anything. I was numb.

The night shift nurse was named Winnie. Shannon asked if he could call her Winnie the Pooh, and she said that was fine. She was a sweet, funny, Taiwanese, Christian lady who told me that the mesh panties they give you in postpartum are from Victoria's Secret. I laughed... Then, Winnie prayed for our family, and I cried for the first time. "I just want to know what's wrong with the baby," I said. There were a lot of other things I wanted to know, but didn't have the mental resources to consider...

The next afternoon, they finally gave us a label: Cystic hygroma. Cystic what? We had to write it down. Thank God it wasn't malignant. Timothy was probably going to have a surgery before coming home. I kept thinking, everything will be okay after surgery, right? Then the visitors came: my parents, Shannon's mom, brother, and sister-in-law, the Harned's, Crizer's, people from our church. They didn't know what to say, but prayed for us and were there for us in our pain.

I was ready to be discharged from the hospital, and they brought us a fancy "Celebration Meal," which they give to all new moms. It felt like a bittersweet celebration. How could I celebrate without my baby? How could I enjoy a special meal when I would be going home without him? The food tasted like sawdust in my mouth. I wasn't very hungry.

So Shannon and I went home. I remember the moment I first sobbed. I saw a box of diapers that had been given to Timothy at his shower - and it had a picture of a beautiful, normal baby on it. Right next to the box was Timothy's empty crib. Timothy was not normal, and he wasn't home. He was alone in a NICU crib with strangers looking after him, and a painful, scary surgery in his near future. All I wanted to do was be with him, hold him, comfort him, tell him he was not alone, that everything was going to be okay...

Then God reminded me, "I AM with Timothy. I knew the whole time Timothy was in your womb that this day would come. I knew it before the foundation of the world. Suzanne," God said to me, "Timothy belongs to ME." "Yes, God," I replied. "Timothy belongs to You." God is so good, God is so good, God is so good...

I could write much, much more, but I will stop for now. Someday I want to tell Timothy from the very beginning how God has been at work in his life. This is how his life started, and this is the honest telling of the story, from his mother's heart.

Last weekend we looked at pictures from Timothy's birth and NICU stay. It is amazing how God's plan for Timothy has unfolded, how far he has come, and how God has already used him to change our hearts and bring glory to Himself. We chose his name, Timothy, because it meant "honoring God." We chose it before we knew anything about his lymphatic malformation and all that it would bring. We chose it because God chose it first.

Recently I have been asking myself: Do I truly want to grow in Christ more than I want to have a comfortable life? Hebrews 5:8 says that Christ learned obedience from what he suffered. Is it more important to me to learn obedience through this suffering God has allowed our family to endure? If it could all go away tomorrow, would I miss this opportunity God has given me to grow? James says to count it all joy whenever we face various trials, knowing that the testing of our faith produces endurance. Do I really want the things that are eternal, or do I prefer the comforts of this world? Am I willing to depend on others? Am I content with sacrificing my independence? Philippians says that Jesus became obedient to the point of death. Do I share the same level of commitment?

Isaiah 30:21, "This is the way, walk in it..."

Caring for Timothy is an all-consuming occupation: body, mind, and spirit. Paul talked about himself being poured out as a drink offering on the Philippian church... our lives are being poured out into Timothy's with both suffering and joy. Self is lost in the constant, unrelenting needs of our son. Even with all of the help, prayers, and love extended to us over the last 6 months, there is a certain loneliness to raising a child with special needs that only the immediate family understands. There are no breaks, no time off, no moments when you can just rest - the needs are ever-present and a false move could mean your child's life. Daily we die to ourselves as we give all to our son in the service of God, who has entrusted him to us. We wonder how or why God considered us worthy of such a daunting responsibility. Daily I ask for His grace and help, and He always answers me in return, "My power is made perfect in weakness." If I do not allow myself to be weak, how can Christ's power work in me? "For when I am weak, then I am strong." Most definitely, God has given us the opportunity to show His strength, and this is the hope that keeps us going.