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Hope
I went to bed the other night thinking more about all the things that have happened with Hope. I thought I’d put a few of them in writing in this blog, most of them have been written in her journal already, but it’s fun to look back at all the things that had to happen for her to be part of our lives.
For Hope to have come to the U of I Hospitals, was in itself amazing. Her parents were from the South. They came to Cedar Rapids, Iowa, to deliver her. I, to this day, do not know why. The pre-adoptive parents were from the east coast so why did her biological parents not go to the east coast? A few weeks before she was due, the pre-adoptive parents asked for another ultrasound to be done. Had they not asked for another ultrasound, Hope would have delivered in Cedar Rapids. She would have gone to live with her pre-adoptive parents. They did the ultrasound and found her heart defect. The pre-adoptive parents said they would not proceed with her adoption. I remember Dan saying it was ironic because where the pre-adoptive parents came from was one of the best hospitals that did HLHS repair. Hope was brought to the University of Iowa Hospital for delivery. Dan heard the story and is moved by it. The biological mother has decided she will deliver but will abandon the baby and refuses to do the surgery. The surgery is risky, odds are 50/50 at this time and for that reason the hospital is not required to do the surgery. The options presented to parents when their baby is born with HLHS are: 1) to not treat, 2) the three-step repair surgery, or 3) a heart transplant. Dan cannot stand for Hope to be alone at the hospital and to die without a family so he decided to talk to me about bringing her home. We’ve been through Kyle’s death. We knew what to expect. We figured we could handle this and this little girl deserves a family who loves her. No one should be alone when they die.
For Dan to have been in the unit was a miracle in itself. Codey had to have his shunt repaired earlier in the month. Your rotations are for a month when you are doing your fellowship. You are either in the unit or you are doing research. Dan would not have been in the unit, had he not had to make up for missing a couple days because of Codey’s surgery. Since Dan would not have been in the unit, he would not have heard about Hope. He did hear her story, fell in love and he talked to me. He refused to let me see the baby until I had time to pray and contemplate . Dan knows how much I love babies and once I saw her I would not be making a decision based on facts or what God is saying or what was best for our family.
We decided to talk to the kids to get their opinions. Zach,who was 10, felt that no baby should die alone and without a name. Cassie, who is 6, had always wanted a baby sister. She is ecstatic about the prospect of having a sister. She got on her knees and begged for this sister, who may only live a couple of weeks, but Kyle was her brother and she doesn’t even know him, but someday she will be with him forever, so this little girl will be her sister forever too, even if she only lives a couple of days, and really she has always wanted a sister so plllleeeeaaaassseeeee can we have her? (If you know Cassie, you know that is exactly how she talks when excited. It’s one big, long run-on sentence. I don’t have a clue where she gets it from. lol) I was blown away by my kids reactions. Dan talked to social worker, nurses, and physicians many of whom think we may have lost our minds and weren’t afraid to give Dan their opinion. He put everything into motion. Because Hope was so sick they talked directly to the mother to get permission for us to take Hope home. Her biological mom seems relieved that we want her baby. We started making plans to take Hope home.
After praying about Hope, asking God whether this will be too hard on our kids, deciding that we can do this, and setting things in motion, the cardiac surgeon comes up to us and says that he will do everything in his power to get her through surgery if we want to try. We take this as a sign from God and we decide if we’ve come this far, we should at least give her a chance at life. We decide to proceed with the surgery and adoption. We talk to the social worker again. We find a lawyer. I can’t even remember how. We file the papers. Time is of the essence because once they stop the prostaglandin, Hope’s PDA will close and she will start to die. A judge rules that the 6 month waiting period can be waived so that we can get her on our insurance. We have a quick home study. Everything is proceeding which, having gone through what we have gone through with Benjamin & Maisey’s adoption, is a miracle in itself.
We found out it will cost close to $10,000 to adopt her. We obviously don’t have $10,000. We were barely able to scrap by on what Dan made working at the hospital. Fellows are paid better than residents but it’s still not a lot. We had $120,000 in school loans, a car that barely worked and had to pay $1,200 for a 3 bedroom house – gotta love those college towns. We started to pray for help knowing if this is truly what God wanted, He would provide. We got a credit card offer in the mail, we took this as a sign and applied for it, believing the whole time that no one would be crazy enough to give us that much credit. They gave us a $10,000 limit. Who gives a $10,000 limit to poor people with huge debt? We paid for Hope with a credit card and on June 29, 1999, she legally became our daughter.
Hope’s first surgery, when she was 3 weeks old, was complicated. She came out of surgery with her chest still open, a thin, transparent sheet covering it. What an amazing sight, to see your daughter’s heart beating in her chest. It was completely and utterly unbelievable and amazing, but just take my word for it – no need to see for yourself. Her heart rate went through the roof. The doctors can’t get it below 200. They told us that she can’t last for long like this. They wanted to try an experimental drug. Dan says okay but he is going to do some more research on it and headed to the library. We prayed and prayed and prayed. They gave the medicine and nothing happened. They can’t figure out why. They gave the medicine again and nothing happened. Dan came back after hitting the computers and said he didn’t want her to get the medicine, it’s experimental and he thinks there may be other alternatives to try. The nurse said they’ve already given two doses and nothing has changed. They can’t figure out what has happened. The nurse comes in later to change Hope’s tubing, feels Hope’s bed, it is all wet. The medicine has drained out onto her bed. Hope never got the medicine. I remember the nurse’s face when she was telling Dan that something was wrong with the hub and Hope didn’t get the medicine. In the meantime, there is an alternative found, they tried it and her heart rate came down. There were great risks involved with the experimental medicine and somehow Hope did not get the medicine. I don’t know why it happened, but I love that it happened.
I remember being so sad and just wanted to know that it would be okay. I had been through this before with Codey. He didn’t even leave the hospital until he was 14 months old and then it was only for a few days. He was so sick and for so long. I don’t know how many times we have heard that he was going to die. How many times we called family for them to come down because this would be his last day. He was on a vent for years, trached until he was 5. Dan and I cared for him at home. We had nurses for a while, but that lasted only a year or so because of different things that happened. I think about that a lot. Who lets parents with no medical experience take home a child home who is that sick? With Codey, we were asked time and time again if we wanted to withdraw support. How can you withdraw support on a child who is lying there playing and kicking and smiling? I remember thinking all the time about Kyle being on a ventilator. He died with every possible thing being done for him. I knew that if God wanted to take Codey, He would take him home. I didn’t want that to be my responsibility. I didn’t want to make that decision. I didn’t want to question whether what I did was right or wrong forever. I knew what that decision was like for parents because there was a boy in the unit that had been sick for a long time and those parents withdrew support. I pray for that mother to this day and I think about that little boy all the time. Dan even had his name engraved inside a ring – their story touched us that much. I know that everything is on God’s time. They told us Codey probably wouldn’t live past a year and he will turn 25 this year. Only God knows the number of days any of us have.
Anyway, back to Hope, I remember sitting in my friend’s driveway with Zach and Cassie. I was praying for Hope again, she was just a few days old. Talking to them about what was going on. I joked that I just wished God could tell me that it was going to be okay. If I could just have that confirmation, I could go through anything. We all laughed and I got ready to back out of the drive. As I started the car, the radio came on and played “everything’s going to be all right, rock-a-bye“. We all just stared at each other. I know people talk about coincidences, I prefer to call them Godcidences.
Hope had her 2nd surgery when she was 8 months old. She was supposed to be in surgery from 8 a.m. to 2 p.m. She ended up getting out of surgery at 6:15 p.m. They ended up keeping her in circulatory arrest for much longer than was recommended, over an hour. They had a hard time getting through all the scar tissue, there was a lot of bleeding, and other issues that arose. It was a very scary time. They kept her paralyzed for quite a while after surgery because they were worried about seizures. Dr. Chris stayed by her bedside. She came through it all fine. What a fighter she was, which leads us years later to the next story.
When Hope was 4, we were driving down the road and she proceeded to tell us a story about dancing with a boy named Kyle. We thought she was talking about a boy from home school tumbling who was one of her teachers. She said, “No mommy! My brother Kyle”. She told Zach, Cassie and I a beautiful story about when she was a baby and was lying on a table, and Kyle came to dance with her. Kyle told her that everything was going to be okay and to not be afraid. I tried to remember then if we had even talked to her about Kyle. If you ask her today, she will tell you that she doesn’t remember the story. If you ask Zach, Cassie & I, we can recall it vividly. What a day that was. I realize there is no proof that this can happen, but she was arrested for over an hour and who knows? As a mother, I like the thought that Kyle was there for her.
When Hope is 3, her heart surgeon is going to move to Canada. He doesn’t want anyone else doing Hope’s surgery because he knows what he did to start with and what he’ll see when he opens her up. He asks us if we are willing to do it early so he can finish what he has started. God is in all things because he did not let Dr. Chris forget her. We’ve had many doctors move. It’s not uncommon in a teaching hospital. The most we ever got when they moved, was a letter in the mail. I love that God kept her on Dr. Chris’ heart. She did remarkably well.
We go to the U for all Hope’s medical care. She had to have heart catherizations from time to time. Her cardiologist was moving and we were to meet her new doctor. Dr. D. We were nervous because we had had the same cardiologist for a long time. Dr. D heard Hope’s story from her previous cardiologist and decides to take Hope’s information with him to a nationwide cardiology conference where he presented her information. This is all before he has even had an appointment with us. He presented her case (a broken stent in her left pulmonary artery) to his colleagues and they decided what course of action he should take. She got the very best advice from the very best cardiologists across the nation. Why would he do that for a patient he had yet to even meet?
We discuss Benjamin’s case with this same doctor. He tells us while he was in New York he worked on a couple of cases like this. He says it’s an unusual case because most of these kids, who are born in the US, get it fixed right away and are completely healed. He has, however, worked on a couple of kids who were adopted with the same defect as Benjamin. He says he won’t be able to fix Benji, but he can buy him some time, maybe even 10 years. We have the utmost respect and trust for this doctor. How a doctor from New York ends up in Iowa, and has worked on cases like Benjamin’s, I don’t know, but I thank God every day that Dr. D is here.
These are just a few of the things that have happened in Hope’s short little life. God is at work in the big and the little things. Trust in His plan. Trust that all things work together for good….not that all things are good. I am honored that He would see fit for me to see these things while I am still on this earth. I can’t imagine how many more will become clear to me when I hit heaven’s gates. I’m sure I will hit my knees thanking Him for coming to my rescue and praising Him for all the things my finite mind couldn’t even comprehend or missed completely and didn’t see while I was living. I am truly blown away at the many blessings I have received and the things that have worked out for the best when I thought it wasn’t even possible.