Mom's Page
On April 5, 2001, our family started traveling a new road. A road unheard of and uncharted by any of our families in the past. Not a bad road, just different. The road of Trisomy 13. I had a normal pregnancy. The baby was very active and everything was going fine until my water broke at 32 weeks gestation. I wasn't really concerned, I just thought I'd go to the hospital, have a smaller baby, be home in a few days and life would go on! Not so, My doctor had me transferred to a bigger hospital in Sacramento that was better equipped to handle premature babies. Even so, I really was not worried. I just thought O.K, we might be here a little longer, but then life would still go on as normal.
At the hospital I had a very extensive ultrasound done. The doctor told me everything looked fine and saw no reason to be concerned. That night I went into full labor and Tucker was born at 7:07 AM the following morning. I saw his little blue body for only a moment before being whisked away. I still wasn't worried because I was told that this was a normal procedure when delivering premature babies and it did not mean there was anything wrong. When the doctor took Tucker out my husband and daughter followed. What I didn't realize was that they were in the hallway watching the medical team with the Neonatalogist trying to revive and stabilize him. In the process of bagging and intubating him, the neonatalogist was saying that there was something wrong with this baby, that his hands were dismorfic, and that they were looking at some syndrome. After stabilization, Tucker was taken to the N.I.C.U. Later that day we were able to go see him. The neonatalogist met us at the door to tell us he had ordered a geneticist to look at Tucker and take some chromosome test. Then we went in to see our baby. All of 4lbs. 6oz, he laid on his hot bed hooked up to all kinds of wires, tubes, monitors, and a ventilator. Reality was starting to sink in that my baby was not O.K. and that this was not going to be a quick jaunt to the hospital! But we still had high hopes for him. His 12-year-old brother, who is an aspiring roper, put a sign above his bed that said "Tucker Reite-Future Cowboy".
That evening after examining Tucker, the geneticist came to our room. She told us that she didn't seem to think there was anything terribly wrong with Tucker. He seem to respond like a normal baby, she didn' t think his hands were all that dismorfic, and that he didn't have true rocker bottom feet. In fact, by visual inspection, she ruled out all the nasty trisomies and that she was going away on vacation and we would probly never here from her again. The following day I was discharged, but we continued to make the hour long drive every day to see Tucker. Then one week later we got a call telling us the geneticist wanted to see us. We knew they found something. We got to the hospital a few minutes early to visit with our baby. They had taken him off the ventilator to see how he would do on c-pap. The neonatalogist walked in and informed us that Tucker had a very, very serious condition but could not elaborate. After he left, my husband and I looked at each other with tears streaming down our faces wondering what serious meant. We listed off a few children we knew with varyring degrees of handicaps and special needs. We agreed that some of those children we would not consider serious, and others we did. But that was O.K if that's what God had in store. Tucker was the little boy God blessed us with and we would love and care for him no matter what. What we were not prepared for was what the geneticist was about to say. I could not believe what I was hearing. A condition incompatible with life? My baby was going to die? Take him home and enjoy him while I can? I was numb. I thought a part of me had died. I was hoping it was a bad dream and somebody just needed to wake me up! We went to say goodbye to Tucker. We kept the sign up that said Future-Cowboy, after all, God can do anything right? We also added a new sign. We wrote the words to Psalms 139:13-16.
We got in our truck to go home. It had been storming all day, but as we drove down the freeway toward the foothills, the sun began to shine and the most brightest, intense rainbow appeared. The amazing thing about it was that it started at the edge of one side of the freeway, went over the top of our truck, ended just on the other side of the freeway, and stayed over us almost the whole way home.(about 45 min.) We felt the peace of God come over us and we knew no matter what happened, God would see us through it.
Late that night we got a call from the N.I.C.U doctor on call. He informed us that Tucker was having severe bouts of apnea and wanted to know if we wanted him resuscitated and put him back on the ventilator or due to his condition, be made comfortable and let go. After going around with the doctor and assuring him we were fully aware of his condition, my husband asked him what he would do for a normal premature baby. After all, Tucker was still 3 weeks away from his due date! The doctor said that he would recessitate them, medicate them, and put them back on the ventilator. So my husband informed the doctor that was what he needed to do with Tucker and we would be down in the morning.
We began to think that maybe Tucker would never leave the hospital so the next morning we called our families and told them if they wanted to see their grandson and nephew, they should come down. We also called our Pastor and he met us at the hospital too. Although we felt if Tucker were to die, he would spend eternity with our Lord but it was a comfort to our parents to have him baptized, so we did so.
The weeks went by. Our pastor put Tucker on their nation wide Calvary Chapel prayer chain. Word of Tucker got around and many churches in the rural area were we live put him on their prayer chains too. Friends from church would stop by the hospital and pray over him at his bedside or softly sing praise songs. One friend would drive to the hospital parking lot on his lunch hour at work just to pray for Tucker.
One month after Tucker was born, it was time for him to come home. He finally graduated to full time oxygen and had a feeding tube. He weighed a little over 6lbs. Still having some bouts of apnea, I requested an apnea monitor. The neonatalogist would not approve one. He asked why we would want to interrupt the process of his passing. And then preceded to tell us that if it was his child he wouldn' t! After giving us instructions on setting an alarm every 3 hours at night to feed Tucker because he would never wake up and cry on his own, we gathered up our baby and left.
The ride home was rough on Tucker. He had an apnea episode. I ended up holding him in my lap most of the way. I didn' t care if it was illegal or we got stopped. After all, what did I have to loose. They said it was possible he wouldn' t make it home, let alone survive a car accident!
We were hooked up immediately with Hospice, who by the way, got us an apnea monitor. Every night I would set my alarm. And every night 15 min. before the alarm was ready to go off, Tucker would wake up crying. After a couple weeks, I got rid of the alarm clock.
Tucker still continued to have bouts of apnea. It would seem as though he would stop breathing for 10 or 15 min. We would crank up the oxygen and do everything we could to get him breathing including rescue breaths. On several occasions we thought we had lost him and I dropped to my knees and started praying. Almost instantly he would sputter and gasp. After doing this several times we realized that maybe God wanted us to try Him first!
Tucker had been home for 3 weeks when it was time to change his feeding tube again. Since he had been sucking on a pacifier when I tube fed him, we decided to try giving him a bottle before we would insert another feeding tube. We filled a bottle then asked the Lord to bless it and Tucker. God has continued to bless him as he has not had to go back to a feeding tube since. Infact, he has moved on to baby foods, cereal and yogurt. Now and then dad tries to sneak in some chocolate pudding or ice cream!
In August we took Tucker to the cardiologist to see if the P.D.A he was born with had closed. An echocardiogram showed that not only had that closed but also the V.S.D that we did not know he had was almost closed. In September, Tucker came off his oxygen as his saturations were able to stay up in the mid to high 90's. In October, Hospice discharged him because he was flourishing and not dying. PRAISE GOD!
In November we had his eyes checked. We knew he could see, we just didn' t know how well. His left eye has the colabolma but he can see well. His right eye is a little impaired do to a partially cloudy cornea.
Tucker has been on raw goat milk since he was about three months old. We add vitamins and other supplements to his meal. We deal with the constipation and adjust his diet accordingly. (Powdered vitamin C mixed into his food works well for constipation) He has an appointment next week to start seeing a nutritionalist. A few weeks ago Tucker had his first cold. A couple days of nasal congestion, Herbs, homeopathic remedies, chiropractic adjustments( which he has been having since the week he came home from the hospital), and much prayer, he was fine. No oxygen was needed. Another PRAISE!
Although still behind developmentally, he continues to progress. He is grabbing at hanging toys, and seems to swing them to the rhythm of classical music, which we play often. He has rolled over some, not consistently, but still works hard at it. He is a typical boy, he loves motion, being tossed in the air, swung upside down, swinging in a swing, being drug on a blanket. If he is moving he's happy!
Tucker sometimes still holds his breath when he cries and then will pass out. I'm always relieved when I start seeing him breath again. He also jumps a lot like the startle reflex. It has not been officially diagnosed but his pediatrician is not worried about it at this time.
Right now Tucker is almost 19lbs and is 29 inches long. He is within the norm on the scale. He will be a year old next month, a birthday we never thought we would celebrate. Statistically he should not even be here, but God is bigger than statistics. We know we could wake up tomorrow and find him gone. Reality is anyone of us could be gone tomorrow. But whether Tucker lived a week or two, or goes on to live a year or two, God's purpose will be fulfilled. As He says in His word, He knows the number of our days before we came to be. Tucker truly is our miracle baby. I would not change him for the world. We love him just the way he is. Even had I known before he was born he was trisomy 13, I would have chosen to keep him, as abortion would never have been an option. We fill very blessed to have him in our lives and we are excited about what God is going to do in his life.
This story was published in the May/June/July 2002 issue of the S.O.F.T. Times. You can read many other encouraging stories like it in the "Family Story" section of their news letter.