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!
| 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 |
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.
He is named after St. John, "the disciple whom Jesus loved"
and King David, the "man after God's own heart."
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?"]
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."
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.
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.
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.
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.
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 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"!
The cast
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.
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.
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.
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.
