This is very much a "work in progress." In fact it has barely begun. I hope to add more of the story each day. I admit, I am writing this partly because doing so is therapeutic. And partly because it may make it easier for people to understand where we are.

Our Journey with John David

Welcome

Welcome to our family, John! We thought we knew something about love, but now we are learning new depths of love. The love we feel for you, and the love we have experienced from so many people around us. God has truly blessed us. We are your willing pupils. Teach us more!

Pictures

Follow this link. A link near the top of that page will take you to a single page with all of the pictures, if you'd prefer to see them that way.
Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadow.     James 1:17 For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God! How vast is the sum of them!    Psalm 139

Intro

This journal was begun three days after John's birth, an event that is changing us like no other in recent history. This description may not be great literature; my goal is a simple, honest account of the journey. Really, it is an account of God's grace, of joys and struggles, and, I hope, of growth.

Background: Are you really having child #9? Will this one be the last?

This section is long, is more philosophical, and is not just about John, so I placed it on a separate page.

Prelude: John's beginnings

I plan to add details later

Birth day (almost): January 15, 2002

I woke up at 4:00 AM, as was usual in those days. When Diane woke up, she said, "I think this is going to be the day." After some preparations for going to the hospital, I went to work for a while, concentrating on writing instructions to my students and to faculty members who would be helping with my classes during my week of absence. I came home at 9:40 AM. so that we could go to Diane's prenatal appointment together. We didn't think we would be back home before our baby was born. Little did we know how long it would be before we'd really be home again.

After a quick examination, Dr. Mayrose said, "You are dilated to 6 cm. Go to jail, go directly to jail, do not pass Go, do not collect $200.00." (He really did use those words!) We expected the birth within a couple of hours. Instead there was a long wait. A lot of time to read, talk, and play Gin Rummy. We did a lot of reading in the Old Testament. Dr. Mayrose was reluctant to use Pitocin because of the danger of rupturing Diane's uterus. We appreciate his cautious approach when it comes to any kind of intervention. Finally at about 9:00 PM he decided to give a small dose and gradually increase it until labor was progressing faster. The question of whether he would be born before midnight was a big one; Will had been born on the 15th of the month, Melody on the 16th.

John emerges

Melody won this one! Because of a posterior presentation, it took Diane a long time to push him out. John was born Wednesday, January 16, 2002 at 12:22 AM. We didn't find out until much later that he was 7 pounds, 12 ounces, and 22 inches long. Now, all that obligatory statistics are out of the way!

He is named after St. John, "the disciple whom Jesus loved"
and King David, the "man after God's own heart."

Levity

We did have a funny event during delivery. In the middle of a push (and in the middle of a senrtence) Diane fell asleep! This provided needed levity to a tense situation; it also indicates how very exhausting the last weeks of her pregnancy were.

Up and Down

The umbilical cord was wrapped around John's neck, and he had inhaled and swallowed a lot of fluid, so breathing was a problem at first. So they had to take him away from Diane immediately. I was so engrossed in watching them work on his breathing and so relieved when his skin went from blue to red that I failed to notice the special features of his countenance. Diane noticed immediately wondered aloud as soon as we were alone if he has Down Syndrome. A few minutes later, Dr. Mayrose confirmed that he shares this concern.

From that moment forward, we have seen God using John to help people (including us). We had an abolutely amazing conversation with the nurse who was assigned to Diane immediately post-partum. At the end, she said that it could not be just a coincidence that she was assigned to Diane; the conversation was just what she needed for a very difficult situation. The conversation helped us a lot too. These kinds of converations keep happening, keeping us up despite Down. [ No further puns on this name will follow, I promise. In the Foreword of a book we're reading, a woman wrote, "Why couldn't the discoverer of my condition have been named Dr. Up?"]

Encouragement

Soon after receiving Dr. Mayrose's assesment, we were on our knees, praying, crying, holding each other, and reading from the Psalms. We found Psalms 46 and 91 to be especially helpful.
   Psalm 46:
         1  God is our refuge and strength,
            an ever-present help in trouble.
         2  Therefore we will not fear, though the earth give way
            and the mountains fall into the heart of the sea,
         3  though its waters roar and foam
            and the mountains quake with their surging.
   Psalm 91:
         1  He who dwells in the shelter of the Most High
            will rest in the shadow of the Almighty.
         2  I will say of the LORD, He is my refuge and my fortress,
            my God, in whom I trust.
We prayed that these verses from Psalm 91 will be true for John:
        14  "Because he loves me," says the LORD, "I will rescue him;
            I will protect him, for he acknowledges my name.
        15  He will call upon me, and I will answer him;
            I will be with him in trouble,
            I will deliver him and honor him.
        16  With long life will I satisfy him
            and show him my salvation."

Hold him?

This was the hardest part. With all of our other children, we had been able to hold them a lot, and they had been able to nurse right away. We hardly got to hold him at all in the first 30 hours of his life, and after 4 days, the total holding time has probably been less than 8 hours total. But it looks like that will be improving as he recovers from surgery.

More to it than we thought

What we knew about Down Syndrome (a.k.a trisomy 21, because it is caused by having three of Chromosome #21, instead of the normal two) before Wednesday, January 16:
  1. Distinguishing facial characteristics.
  2. Limitations of coordination and intellectual development
  3. a tendency toward warm, loving personalities
We have discovered that there is so much more. What hit us first is tendencies toward heart conditions and gastro-intestinal problems.

On to Riley

Early Wednesday morning, the pediatrician at Union Hospital told us that he thought John should go to Riley Hospital in Indianapolis (about 80 miles away), where they had better equipment and personnel for assessing John's heart. He and another doctor thought they heard a heart murmur. The expectation was that he would be back home on Thursday afternoon if no heart problems were found.

We were so glad to have our pastor, Bill Coker, come to the hospital to be with us and pray with us before we left for Indianapolis

An ambulance from Riley with a team of four pediatric EMTs arrived to pick John up at 4:00 PM. During the transfer, they brought John to Diane's room, so that our other children could see him before he left. We drove home to take the children and pick up a few things that we would need for the overnight stay. We had no clue that it would be a lot longer.

While waiting at Union Hospital, I made phone calls to arrange with my employer to take an extended family leave. Thanks to a generous family leave policy and the willingness of my colleagues to take over my classes, I am able to be off for several weeks.

Great care at Riley

The James Whitcomb Riley Hospital for Children is quite a place. The level of medical expertise and loving concern shown to John and to us has been beyond anything we could have expected.

When we arrived, we were surprised to see Stacy Burger, a friend from Indianapolis, who had already found John's room and took us directly to it. What a blessing to see a familiar face in a strange place. And we enjoyed the food that she brought for the next couple of days.

Sharon, our nurse for the first two nights, did such a good job of making us comfortable. After a couple of hours, I started looking at a list of places to stay, and she said, "we have a sleeping room here if you want to use it." It wasn't the Ritz, but it was 58 steps from John's bedside, and that was perfect for us.

Feeding time (or not)

John was fed only by IV until they were sure that he wasn't having heart or breathing problems. Also, there was a lot of blood in his stomach (turned out to be Diane's blood, swallowed when she was bleeding early in the pregnancy). By Thursday afternoon, they were ready to let him try eating. He ate a little, but not much.

Down Syndrome babies often have trouble coordinating sucking, swallowing, and breathing, so they have to be taught to eat. The developmental specialist scheduled a test in which he would drink formula containing barium, so an X-ray could watch the swallowing process.

The bottles that the hospital stock have a high flow rate; it was suggested that we get some Avent bottles; this began a three-hour tour of various parts of Indianapolis, until we finally found the bottles at Walgreens. Getting away from the hospital for this time was actually a much-needed respite.

I had so many thoughts/feelings that I wanted to express. I decided that doing this journal would be a good outlet, as well as a way of informing family and friends about what is happening with John.

Blockage and Surgery

Thursday night he ate better, but on Friday morning, he did not want to eat at all.

His appointment in Radiology was at 3:00. When we got there, the X-ray showed someting surprising. The formula was making it to his stomach, but not beyond, due to an obstruction in his duodenum (not sure if I spelled that correctly). We wonder if it would have taken a long time to find it if he had not been scheduled for the Xray for another purpose. And we wonder if they would have focused on the stomach and below if he had not vomited while he was in the X-ray area.

Sharon and Rachel came from college for the weekend to help out at home, and to be with their brothers and sisters. They stopped at the hospital, where they were with us during and after John's surgery. We may have been too shell-shocked to show it well, but their visit meant a lot to us.

Amazingly, they got him into surgery by 6:00 PM, and by 8:30, he was on the road to recovery. They found that his intestines weren't pointing in the right direction, and in the process of rearranging, his appendix ended up in an unusual place. So the surgeon decided to go ahead and remove it; he was concerned that if John has appendicitis later in life, doctors might not recognize it if the pain is coming from the left side.

Saturday, a day of refreshment

John seemed to be doing well on Saturday, despite having what seemed like as many wires and tubes as one could find room to attach to such a small body. He slept most of the day; we knew that the process of picking him up might be painful for him, so we only did so when he was already awake.

Bob and Stacy Burger came at noon to bring us lunch and a welcome conversation. At 5:00 I walked about a mile (round trip) to a grocery store to pick up a few things we needed. In October, I finally stopped procrastinating and began a regular exercise program, which has really gone to pot while we are here. This was the one aerobic high point of that week.

When I returned, Diane said that Ronald McDonald House had called and we got in. "Do we have to move?" I thought. This place is so familiar and so close. I've come to like it here.

A Taste of Heaven

Previously, the only time "McDonald's" and "Heaven" had ever appeared simultaneously in my brain was in the tongue-in-cheek Daniel Amos song "Mall All Over the World". But here I was, sitting in the conference room at RMH (the Ronald McDonald House) thinking about heaven and trying to hold back tears.

A RMH volunteer was explaining the house rules to us. Mainly that consisted of explaining an incredible array of facilities and services. It was amazing how I could have been reluctant to move there! it was just the kind of place we needed, and beyond our imagination.

I had thought, "RMH will be a little better than the room in the hospital, but will it be worth moving away to get there?" But when I arrived, it was so much more than I ever thought it would be. I think I tend to (erroneously) think about Heaven in the same way. It'll be a little better than here, but what is here is close, familiar, and the process of moving there and leaving here will be painful. I think the surprise, joy, and unworthiness that I felt when entering RMH was a probably a little taste of what I'll feel on my last "moving day"!

Hand Cast

Heather, who was John's night nurse on Friday, had a plaster cast of John's hand made for us, and attached the ribbon and card.
The cast

Busy days

I always pictured days sitting around the hospital as being boring. But Diane and I have remarked to each other several times that surprisingly each day flies by and we wish we could have done more. Just taking care of John, communicating with friends, writing this journal, occasional shopping for something we need, eating, and even sleeping a little it seems to be more than we have time to do each day.

Waiting and watching

Sunday through Tuesday (January 20-22) were mostly all the same as far as John's condition was concerned. He was getting to be gradually more alert. His billirubin level stayed high, so he had to keep his blue light (I hear you can get these really cheap from K-Mart now). A sleep study showed a slight tendency toward sleep apnea (we are not yet sure what, if anything, we'll need to do about that).

Mostly the days seemed to simply run into each other. Visits from Sharon, Rachel, and Matt on Sunday, from Tad and Kathy Foster on Monday afternoon, and from the Rao family on Monday evening really helped. Winnie Caskey brought Will, Joel, and Melody to the Children's Museum, where I was able to meeth them for lunch. More and more we began to realize difficulty of keeping contact with the younger children while we were here.

We have appreciated so much that Diane's mother has been willing and able to stay with six children at home, that Mary Mayhew has coordinated the many other people who have helped us, and that so many people have been willing to help. Mark and Janis Strahm have gone gone far beyond the call of duty in terms of getting children to choir practice and basketball practices/games. We will be so glad when John can be home so that we can be with him without being away from the other children.

Together for a little while

On Wednesday morning, I left early, got to Rose-Hulman at 5 AM, and took care of a few details there. I exercised at the gym (something I had finally gotten around to doing regularly, and which has been sorely missed while we have been here). Then I went home to spend time with the kids and get their things ready for them to come and spend the night here.

We arrived in mid-afternoon. Just before we got to the Ronald McDonald House, Abby had a bout of projectile vomiting. It would have been no fun to deal with this at home, but here it seemed overwhelming. By the time I got Abby and the Van cleaned up and got to the hospital, it was almost 5:00. They were in the process of transferring John out of the NICU and into a regular room. We were thankful that he had made so much progress, and sad to leave behind the excellent care that the NICU nurses had given John.

A local church served dinner at RMH, and we were so glad. We had no energy for either fixing a meal for our family or going out somewhere. We got to read and pray with the kids for the first time in 10 days, and we rejoiced. We also got to bed very late and woke up exhausted on Thursday. Being away from us has obviously been hard on everyone, but especially on Rebekah, who is not yet 23 months old.

On Thursday, I took all of the children to the Children's Museum (it's a wonderful place), where the Burgers met us. Then took Joel to a doctor for an ear infection, back to the hospital, a quick dinner at McDonalds, and it was time to take them home again. The extended quality family time that we had envisioned didn't quite materialize, but we were glad for every moment we could get.

All of this wonderful real-life stuff has made it nearly impossible to respond to most of the encouraging phone calls, letters, and email that we have received.

Finally Eating!

On Thursday morning they began feeding John some Pedialyte by mouth, and by Thursday evening, they switched to breast milk (5 cc every 3 hours). By Saturday morning, he was up to 45 cc per feeding, and the billi-light was gone. We are hopeful that he will be home within a few days.

A great visit

On Friday, January 25, we had an excellent discussion with Rich and Beckie Johnston. Rich is a pastor at the Rao's church. They have a Down Syndrome child who is 11 years old. We had a very notty-gritty discussion about many things we'll probably be dealing with along the way, and also about the joy that their son brings to everyone.

Days of waiting

For the next several days, John continued to eat more, and gradually his IV was cut back. We began to be hopeful that he would be going home soon. We were also concerned that, with so much attention being given to the aftermath of his surgery, we had not heard from the pulminary or developmental pediatric people for over a week. Fortunately, during the last two days in the hospital, we had a flurry of such visitors, and many of our questions were answered.

Sharon, Rachel, and Matt once again spent the weekend in Terre Haute. We are so grateful that they were willing to take out two weekends to help out at home when we couldn't be there.

It was great to have visits from Donna Bowles, the Womacks and Mitcheners, and Stacy Burger. All of the people who visited, called, or sent cards or email did so much to encourage us. Also those who provided transporatation for our children and meals for us (which have continued for almost two weeks after our return home. Mary Mayhew coordinated people who volunteered to help, and provided much help herself. Alyssa Bowles came several times to help Diane's mom and to do things with the children.

Home from the Hospital

Tuesday, January 29, was a grteat day. At the end of it, Diane, John and I happily pulled into our driveway in Terre Haute. We were thankful that John could come home so soon, and for the care that he had gotten at Riley. We weren't sure if we were ready for the next phase of the adventure, but there we were.

Because of some apparent tendency toward apnea, John came home with t heart and breathing monitor. The first monitor was apparentl faulty and issued ear-splitting false alarms frequently. After three nearly sleepless nights, we called and got a replacement.

Feeding requires so much more time and energy than with our other children. But it is a great time of bonding. John is just great; we know more than ever that God knew what he was doing when he sent John to our family.