Sometimes God gives you something or someone in your life who is your greatest blessing and your greatest challenge all wrapped up into one. This is the story of Paul and what he means to our family.
In December of 1998 I had a miscarriage. That pregnancy wasn't planned and for a while I wasn't really sure I was ready for another baby, then at 7 weeks I miscarried and discovered how much I really had wanted that baby after all. Rick felt the same disappointment I did and we decided to go ahead and try again. I was delighted when I discovered in June that I was again expecting. I was 37 years old at the time and classified "high risk" because of problems during my previous pregnancies so my doctor did quite a bit of routine testing. However, she knew I was strongly pro-life and so we did not do AFP testing or amniocentesis since I wouldn't consider terminating my pregnancy under any circumstances.
In September of 1999 I went in for a routine ultrasound. Rick was away on business in Norway and I was excited to find out if my baby was going to be a boy or girl. The Lord was looking out for me that day because a good friend from church, Martha Frascella wanted to go with me into downtown Houston for the ultrasound. We drove in to the Texas Medical Center intending to have lunch and do some shopping after the ultrasound was finished. I remember how excited I was to find out the baby's sex. I went in for my ultrasound and Martha came in with me and about halfway through the procedure the technician wanted to move to a different room with a more high-resolution machine. (warning!! this is not a good sign) At that point the radiologist came in and finished the test and afterwards told me that it looked like my baby had a heart defect. He recommended I go to see a pediatric cardiologist. After I received a copy of my ultrasound report (I had to throw a fit to get it) Martha and I left and out in the car I started to cry. Martha is my most amazing sister in Christ. She worked with a crisis pregnancy center and knew a wonderful doctor from our church who also volunteered at the crisis pregnancy center (my own OB, Dr. Mary Alice Cowan, was out of town at a conference) She called Dr. Alan Moore from her cell-phone right there in my car and he, amazing man that he is, sat there and talked to me for about 40 minutes on the phone. When I told him what the radiologist had said he recommended that my first step be to get a level 2 ultrasound and began to name some doctors in Houston who do them. He mentioned Carolina Adam and I recognized her name from a level 2 ultrasound she'd done on me when I was pregnant with Stephen 8 years before. I called my OB's office and Dr. Cowan's nurse made an appointment for me to see Dr. Adam the very next day. Martha wanted to go in with me that day but I was feeling pretty overwhelmed and really wanted to be alone so I went in to see Dr. Adam the next day by myself. During the ultrasound she told me she was very worried about my baby and that it looked like he had a severe heart defect. When I asked her what caused it she said it could be a number of different things, genetic and infectious among them. I remember saying, "well, I guess I need to talk to Dr. Cowan about an amnio when she gets back" and Dr. Adam said that she did a lot of Dr. Cowan's amnios for her and we could do one right then if I wanted to. I did want to, I think I was holding on to the idea that my baby's heart defect was from an infection, that it might be treatable with antibiotics. In retrospect I realize that I was holding on to thin air but we went ahead and did the amnio right then. When I left her office I went straight to the airport to pick up Rick. He'd been unreachable during all this time as he was traveling in Norway and then home to Houston. When we got home I crawled into bed and started to cry and when Rick asked me what I wanted all I could think of to say was "I want my Daddy" . So Rick called my dad and asked him to come over, which he did. He sat by my bed and stroked my head and I was laying there watching the ultrasound on the video and all I could think to say was "he looks so normal, he looks so normal!" (Oh yeah, I had found out the baby was a boy)
The next few days were very hard. We spoke at length with our pastor, Bob Livesay about the possibility that our baby had Down Syndrome. Our friends and family were praying that everything would turn out to be fine, that some mistake on the part of the doctors had occurred, but in my heart I knew that our baby was not fine, and that something was wrong. Within the week we had the results of our amniocentesis. Our baby was definitely a boy and he definitely had Trisomy 21, the most common form of Down Syndrome. We picked up the pieces and decided it was time to move on. We made our first appointment with one of the most amazing women I've ever known. Her name is Nancy Ayers and she's a pediatric cardiologist at Texas Children's Hospital. She was and is Paul's cardiologist. We went in for the initial echocardiogram and Dr. Ayers mapped out Paul's heart defect for us. She was supportive and informative, she never asked me if I wanted to terminate my pregnancy. For her, Paul had as much right to every treatment possible as anyone. I really loved her for that! We saw Dr. Ayers every 3-4 weeks for an echocardiogram, to map the development of Paul's heart and his general condition. We also had several more level 2 ultrasounds with Dr. Adam. Dr. Adam asked me repeatedly if I would consider terminating my pregnancy and I could tell that my pro-life position was somewhat alien to her. I told her something that I believe with all my heart. I honestly believe that the best definition of abortion is the sacrifice of one person's life for another person's convenience. We, as Americans, are appalled that Adolf Hitler sent people to the gas chamber for being retarded, but here in the United States we kill them before they're born for the very same reason. (Okay, I know I'm getting preachy and off topic)
The rest of my pregnancy was stressful and anxious but nothing could match what was waiting for us at week 27. During Paul's level 2 ultrasound Dr. Adam told us that Paul's lungs weren't developing the way that they should and he had a condition called pulmonary hypoplasia. He also had a condition called fetal hydrops. What those two things meant was that because of the poor condition of his heart Paul had free fluid in other body cavities, the abdomen, around the heart and around the lungs. There was so much fluid in his lung cavity that the lungs weren't developing and at that point there was very little development of the left lung at all. On ultrasound his right lung looked sort of small and stumpy but his left lung was almost non-existent. It was like a little fist at the top and everything else was black, that was the fluid. We were told that Paul would almost certainly die and we could only expect him to live 24 to 48 hours after birth. At that point all I really wanted to do was crawl into bed and pull the covers over my head. But...life goes on. I still had two older children 10 and 8. I'll never forget the day we told them about the baby having Down Syndrome, and then we had to tell them that he was probably going to die. People may wonder why I told them anything at all, why not wait and see what happened. I had many reasons for keeping them informed but the main one was simple. They could tell something was wrong. I'm not very good at hiding things, I'm a crappy liar and about as transparent as glass. It was pretty obvious that I was not your typical happy, excited pregnant lady!
At that point we stopped going to see Dr. Ayers, and we started to prepare for the worst while continuing to pray and hope for the best. I found a lot of solace in my church family and I spent a lot of time on the computer, I met some amazing prayer warriors via Crosswalk.com who listened to me pour out my heart and prayed for me. My friend Martha wrote me a letter that I treasure to this day. And our women's pastor Ann Livesay led me to some amazing Bible passages that I still rely on! Psalm 55: 4-6 My heart is in anguish within me, And the terrors of death have fallen upon me. Fear and trembling come upon me, and horror has overwhelmed me. I said, "Oh, that I had wings like a dove! I would fly away and be at rest." Psalm 55:17 "Evening and morning and at noon, I will complain and murmur, and He will hear my voice." I felt like all I ever did was whine and complain and that verse really consoled me. It told me that God understood and he didn't blame me for being so whiny, he would still listen to me. Psalm 55:22 "Cast your burden upon the Lord and He will sustain you; He will never allow the righteous to be shaken." Psalm 119:73 "I know, O Lord, that Your judgments are righteous, and that in faithfulness You have afflicted me" Nahum 1:7 " The Lord is good, A stronghold in the day of trouble, And He knows those who take refuge in Him." There are so many I can't write them all here, but needless to say Ann was a huge help. During that time I read a book called "Disappointment With God" by Philip Yancey. It was such an inspiring book to me. It made me realize that God reveals himself through his people, and when I looked around at my church family, my husband and children and parents and my new internet prayer partners I could see Jesus revealed in all of them. We chose Paul's name during that time. I had listened to a sermon on the radio and told Rick and the kids about it at dinner that night. The upshot of the sermon was that no one comes to know Jesus without a witness. That everyone who knows Jesus needs to be told about him and about who he is. Even the apostle Paul who we think of as being struck on the road to Damascus had heard about Jesus and who he was. The pastor's theory was that Paul had heard the sermon of Stephen when he was martyred and therefore he had had a witness. His witness was Stephen. Well....our son Stephen really latched on to that idea. That Stephen had come first and that he was instrumental in winning Paul for Christ and from that moment on Stephen was adamant that the baby needed to be named Paul. So...he became Paul. There was never any other name for him after that.
My pregnancy was getting close to the end and Paul was really getting big. His weight was estimated at over 7 pounds when I was 35 weeks so we originally planned to induce labor at 37 weeks but Dr. Cowan felt like a C-section would be a better idea given the baby's size, prognosis and my own heart problem. (I'm not going into that here, but suffice to say my own cardiologist was involved at this point) Dr. Cowan decided to deliver Paul on January 27th because it was a Thursday and her regular day off. She wanted Paul to be her only concern that day. We had met with the chief of neonatology at TCH and the plan was to deliver Paul early in the morning with neo standing by. The week before Paul's due date our pastor stopped Rick on Wednesday night after AWANAS and asked him how we were doing. Rick's response was something along the lines of "well, it's almost over" and Bob was shocked. He had no idea that we'd had such a poor prognosis and that our baby was expected to die. He called us on Friday and asked if he could mention us during his sermon. He also said he wanted to give people in our church the opportunity to pray for us and his plan was to have us get up and go to the choir room at the end of the sermon so that anyone who wanted to pray for us could join us there. We agreed and Bob gave a beautiful and moving sermon that Sunday about faith through times of trial. During his sermon he invited anyone who liked to just get up at 10:30 and go to the choir room where Rick and I would be waiting. So...we got up and went to the choir room where more than 60 people from our congregation joined us. They surrounded us and put their hands on us and prayed for us for about 15 minutes. It was the most amazing experience. Once again you could feel the presence of God through his people. After everyone had left Rick and I were still sitting there and one woman stayed behind. She looked at me and told me that God had given her a word for me. Now, I'll be honest and tell you that I'm not usually a believer in people who have "a word" for you. But I nodded and waited and she said she wanted to pray again for my baby and then she would tell me what God was leading her to say. After she prayed she told me that this is what God had said to her "You have called his name Paul, but I have named him Asher for he is happy and it gave Me much happiness to form him. Whether he lives or dies, he will bring Me laughter all his days." I sat there after she said that mostly stunned. I think I said something like "God didn't say whether he would live or die" and she acknowledged that that was true, but that afternoon I went home and looked up the name Asher. It means happy and in some translations, laughter.
On Tuesday we did a final ultrasound to see if there was enough lung tissue present to make giving intranatal surfactant beneficial but there was absolutely no change in lung development. The left lung was still pretty much non-existent and things didn't look very good. That Thursday we went in to St. Luke's hospital in the Texas Medical Center and Paul was delivered by C-section. I was really stressed out by that time and we had an amazing crowd of friends and family at the hospital to pray for us. Dr. Cowan was talking to me as she did the C-section and I remember her saying, "okay Lorri, I'm about to take the baby out" then I heard this bellowing yell, and I (being the brilliant person I am) asked "Is that him?" (like, who else would it be?) They rushed Paul out to the hot-dog stand and Rick ran out after him, a few seconds later Rick ran back in to the delivery room and yelled "he's breathing" then he ran out again. About five second later he ran back in and said "and he's peeing all over the place!!!!". By then everyone was laughing and crying at the same time. Rick came back in and out a few more times but I was pretty much drifting in and out by then as Dr. Cowan performed my tubal ligation and stitched up my C-section. I do remember Dr. Adams (chief of neonatology at TCH) coming in to tell us that Paul was breathing independently and the x-ray had shown both lungs were fully inflated! He had evidently peed out most of the excess fluid. By now Rick had gone out to the waiting room to let our friends and families know what was going on. They took me back to the labor room and let Chelsea and Stephen come in. Then they brought Paul's incubator in and we all got to put our hands in and touch him. He was still in very serious condition, his heart defect was still present, but he was breathing on his own with blow-by oxygen. He weighed 8 pounds 3 ounces at birth and lost about a pound in the first hour (He peed a LOT! ) and he was so pretty. He actually had very big eyes and that perfect round C-section head with a lot of dark blonde hair. He actually had more hair and was a LOT bigger than either his brother or sister had been at birth. Dr. Adams came in and itemized all the things that showed Paul had Down Syndrome. Low muscle tone, legs and arms flopping outward from the body. A large space between the first two toes, simian crease on his feet (but not his hands) stubby fingers and on and on. I remember telling him that he didn't have to convince me I knew Paul had Down Syndrome. But you want to know something funny. At that point Paul's Down Syndrome was about as important to me as whether he had an inny or an outty. All we cared about was that he was alive. He was breathing. He's our miracle.
A lot of people have said something interesting. We've heard "I guess those doctors were wrong" or some variation thereof at least a hundred times. This is my response. They weren't wrong. I saw those ultrasounds, I saw the black space where Paul's left lung should have been. We pray and pray and ask God for miracles and then when he gives us one we want to explain it away! Paul's doctors weren't wrong. He's just been the recipient of a miracle. Paul does have Down Syndrome, he had open heart surgery when he was 7 months old. We've had a lot of close calls with Paul and I fully expect we'll have more but we've also been blessed with wonderful, gifted, talented and exceptional doctors and nurses during Paul's life. God has used them to care for Paul many times but ultimately Paul is in God's hands and God takes care of him and whether he lives or dies he will continue to bring God happiness every day of his life!
Wow! If you've read this far you must really be a glutton for punishment. Thanks for reading the story of Paul. If you know anyone who's expecting a child with Down syndrome or has had one who just needs someone to talk to I'm available, I understand how they feel. Thanks, Lorri
