Going Home Day

After 37 days in the hospital we were finally getting to go home. Friday, March 6th was the day we had been waiting for. The day when we could finally take Jace home with us.

I can't even begin to tell you how stressful this day was. There were so many things to get in order before we could leave, not to mention almost 6 weeks worth of things to pack and load. We received lots of last minute instructions of what to do and signs to look for. We also had to get his medicine filled and make sure we had it all and know how to draw it up. Up until that time the pharmacy had it all ready and all we had to do was give it. Now we would have to draw it up and make sure we had the right amount when we got home. During the middle of all this, we still had to get pictures made of Jace. The hospital had arranged for a photographer to come by and take his picture since we didn't get to have a professional picture made before we left Somerset.

Finally, everything was in order around noon and we were ready to go home. Now the question remained of how would Jace do on the 2 hour ride home. We would see.

Watching And Waiting

We were disappointed about not getting to go home. However, we were thankful that this had happened before we left the hospital instead of after we got home.

The next few days were spent slowly increasing his formula and watching his diapers. On Thursday, March 5th, we finally made it back to 30 calories per ounce. They told us that we could possibly go home the next day. This was such a surprise. We had been told that it would probably be on Monday since we lived so far away. They wanted to make sure all his medical equipment would be there when we got home. You can probably imagine how nervous we felt at the thought of going home, excited, but nervous too.

Continuing To Improve

Jace continued to make great improvements. His weight fluctuated some over the next few days after surgery but they said that was to be expected. Overall, the doctors and nurses seemed very pleased with his progress.

The next couple of weeks were very routine. We spent this time learning what all to do when we went home. The doctors also worked on his feeding schedule. They were gradually increasing his amount as well as the calories per ounce. Normal formula is 20 calories per ounce and they wanted Jace to work up to 30 calories per ounce.

Jace progressed so well that they begin talking about going home. They gave us a tentative date of Mon. March 2nd. We were so excited and a little nervous.

On Saturday, Feb. 28th they discovered some blood in Jace's diaper. They thought this was due to increasing the calories in the formula too quickly. Our hopes of going home on Monday were soon gone. He would have to stay until they could get his formula just right without any signs of blood in his diaper.

Back To Surgery

The doctors discussed the best plan of action for Jace and his feedings. They decided to do a procedure called the Nissen. They would attach his stomach to his esophagus to try and stop the milk from going into his lungs. They also wanted to put a feeding tube in his stomach. This made us feel some better because they had told us if the tube came out of his nose when we got home then we would have to reinsert it. Neither one of us felt comfortable doing this. However, this meant he would have another surgery. They scheduled his surgery for Mon. the 16th.

On Monday morning we thought he would go to surgery around 10. We were then told it would be 12, then 2, and finally around 4 he was taken back to surgery. This procedure would only take an hour and a half to two hours. When it was over we were allowed to stay with him during recovery. He did great and was able to come off the ventilator and return to his room around 8:30. This turned out to be a very long day for us but we were thankful everything went well.

His weight on Mon. was 6 lbs 6.2 ozs.

Busy Times

The next several days were so busy for us. There was so much to learn. We both stayed with him the first night in his new room. We then decided that I would stay at night with him and Jamie would stay with Taylor at the Ronald McDonald House. They could stay until 9:00 and Jamie would come back early the next morning. His parents and my parents took turns staying with us. This really helped us alot. They would watch Taylor each morning until she could come to the hospital at 9:00. They would stay with Jace so we could go downstairs to the food court and eat or occasionally leave the hospital for a good meal. They even kept our laundry done. We are so blessed to have such wonderful parents. Taylor stayed with us most of our stay except for a few days. We would get her school work and she would work on it at the hospital. This helped keep her occupied too.

Jace continued to recover well. The following is his weight on these days:

Wed. Feb 11th - 6 lbs 7.6 ozs

Thurs. Feb 12th - 6 lbs 7.4 ozs

Fri. Feb 13th - 6 lbs 13 ozs

At this point they decided to do the swallow study. They gave him some medicine and then he would drink from a bottle. They would watch on a screen to see where his milk was going when he swallowed. They discovered from this study that some of the milk was going into his lungs. They felt that it would be in Jace's best interest to insert a feeding tube in his stomach. Feeding is one of the biggest obstacles that HLHS babies have to overcome. It is very important for them to be able to gain weight before the second surgery. The doctors do everything they can to help the babies overcome this hurdle.

Moving Day

Monday was a pretty uneventful day, but Jace was still doing wonderful. On Tuesday, Feb. 10th, Jace was moved out of the Pediatric Intensive Care Unit. We were moved to the 6th floor. This is the Cardiac recovery floor. It is more like being in a regular room. This was a big adjustment for us. We went from having a nurse at his side at all times to having a nurse available but only coming in at certain times. As you can probably imagine the next several days were very stressful. We watched his monitors continually. The nurses told us that they would begin preparing us to go home. We were glad to be on this floor because it meant he was improving, but also overwhelmed with everything to learn. They had placed a feeding tube in his nose and we had to learn how to set the pump and give his medicines through a port on his feeding tube. They told us that they would do a swallow study later to see if he could take some by bottle. He weighed 6 lbs 6 ozs. This is only 4 ozs above his birth weight but considering what all he had been through we were thankful for this weight.

A Much Better Weekend

Friday was a much better day. They started Jace on medicine to help control the seizures. It worked because there were no more signs of any seizures after Thursday. They told us he would stay on this medication for several months to make sure there were no more seizures.

On Saturday and Sunday, we had lots of family and friends come for visits. On Sunday, John and Jeana Pike came to see us. I teach with Jeana and their son, Collin, has the same thing as Jace. This visit helped us so much. They told us some things to expect. This gave us so much hope for Jace's future. Sharon Steele also came to see us. Her grandson also has the same diagnosis. She shared some of their experiences with us. We were so thankful for them coming to see us. It really made us feel so much better after talking to them. It is also nice to know that there are other people we can talk to when we get home. I still find it very strange for this to be so rare that four boys in our small town have this same heart defect.

Jace had a wonderful weekend. The doctors were very happy with his progress.

A Scary Situation

On Thursday, Jace had a set back I guess you could say. He began to have seizures. He would remain alert but his head would twitch and his left foot would jerk, even when we were holding it. If the nurse had not told us what was happening we would not have realized that they were seizures. They did an EEG to try to determine what was happening. It showed that he had a stroke at some point during surgery. The seizures were now a symptom of the stroke. They told us that it seemed to be a small stroke and babies could recover much better from something like this than adults could. However, they would not know the full effect of the stroke until they could do an MRI and it would be several weeks before they could do one. We would just have to wait and see. I sat beside his bed most of the day to watch for signs of more seizures. It was so hard to watch him have them even though I knew he wasn't in any pain. The doctors didn't seem too concerned so that made us feel better about it. That was such a long, stressful day.

Weekend Of Waiting

On Friday we met with Dr. Bichell, the surgeon who would perform Jace's Norwood procedure. He spent time with us going over the HLHS and what this surgery would consist of. He also discussed with us the next two surgeries and time frames for them. Jace will have the second surgery between 3-6 months and the final surgery sometime after 18 months. He told us that this first surgery was the worst but his success rate was about 85%. That made us feel good but it also made us worry about the other 15%. At this point we knew we had to leave it in God's hands. Dr. Bichell said the plan for the weekend was to keep Jace stable and as comfortable as possible. He would be his first case on Monday morning. Now all we would do was wait and pray.

As you can probably imagine that was one long weekend of worrying. I felt like everything was a blur. That was so much to take in at one time. I thought about the scene in the Wizard of Oz where Dorothy gets taken up in the tornado and is watching her life pass her by while she's spinning out of control. That's about the way I felt.

We had lots of visitors over the weekend and that helped to pass the time. On Sunday, we went to chapel service and that was very comforting. The pianist played Farther Along before the service started. As I listened to the song, I realized that God did have a plan for Jace and a reason we were having to go through this, but it might be awhile, if ever, before we would know what it was. That night Jamie and I stayed with Jace in his room but I don't think either of us slept much.


The Deciding Day

Jace was scheduled for surgery at 7:00 a.m. on Monday morning. Taylor arrived early so we could spend some time with him as a family. This was very hard on her. She was so excited to have a baby brother and this was not what she had expected. She was a trooper through it all though.

When they came to get him they told us that we could ride down in the elevator with them. When the doors opened we had to say goodbye to him. I think this is the hardest thing I have ever had to do. No parent wants to think about the possibility of losing their child and this was what we were facing. This was the part that was so hard on Taylor. We had to turn and go one way and Jace went the other. She was so upset that we had to wait outside the doors to the waiting room for awhile to give her time to recover. I think that helped Jamie and I to not fall apart because we knew we had to be strong for her.

The waiting room was full of our family and friends. It helped so much having everyone there with us. I got several calls from people at school and that helped to pass the time. My pastor's wife, Ann, told me something that day that gave me great peace with the surgery. She told me that one way or the other Jace would be healed that day. She was so right. Either the surgery would help to repair his heart or he would have a new heart in heaven.

They called around 8:20 to let us know that they had made the incision and everything was going well so far and they would call back around 10:00. When they called back they said he was on the by-pass machine and everything was going fine. Sometime after 12:00 they called back and said he was off the by-pass machine and they were starting to close up and he was doing great. You can imagine what a relief that was to hear. Around 2:00 the surgery was completed and he was in recovery. Dr. Bichell came out and told us that everything had gone well and we would be able to see him in an hour or so but to expect some swelling when we saw him. At that point I didn't care how he looked as long as I knew he was going to be alright.

When we were finally able to see him we were really surprised at how well he looked. He wasn't nearly as swollen as what we were expecting. We were just so happy to get to see him. They told us that the next 48 hours would be crucial for him. For the next 48 hours I don't think we left his room much. There was only one chair that would make a bed so I slept in it and Jamie slept in the waiting room. The night before surgery he slept in Jace's room on the floor. It only took one night of that for him to figure out he couldn't do that anymore. We were fortunate enough to have a room at the Ronald McDonald House but we didn't want to leave Jace at this point. He was in the Pediatric Intensive Care Unit (PICU) with his own nurse but we still didn't want to leave him.

The next 48 hours went extremely well. He did excellent. His nurses bragged on how well he was doing. We were so thankful he was recovering so well and making progress.

Arriving At Vanderbilt

I think that was the longest trip of my life or atleast it felt like it. Some of my friends called during the trip to check on us and that helped to pass the time. When we arrived at the hospital Jeremy met us in the parking garage with a wheelchair. Later I was glad he did because when we went through the doors it was very overwhelming for me. I don't know if I would have been able to walk. Up until that point it had all seemed like a bad dream but actually being in the hospital made it a reality for me, a hard to handle reality.

Jamie took me back to the NICU to see Jace. It was so hard to see him hooked up to all those machines but I knew he had to have them. I was so thankful that he was stable. At that point, Jamie began to tell me about Jace's illness.

The doctor's had discovered that Jace had Hypoplastic Left Heart Syndrome (HLHS). This basically means that the left side of his heart did not develop properly. He would need a series of three surgeries. The next few hours were spent with doctors explaining his condition and what we could expect. It all seems like a blur now. I do remember Jamie telling me that this was the same thing that Jeana's son had. I teach with Jeana and knowing how Collin was now gave me so much hope for Jace.

Surprising News

Jace's first day was wonderful. He was such a good baby. He hardly cried except when he needed changing or was uncovered. He had lots of family and friends come to see him. However, holding time was hard to come by because Taylor was so excited that she hogged him. The day went by quickly.

Jamie left late that afternoon to go to the funeral home to embalm aunt Julia. Nolan went with him so Judy stayed at the hospital with me. We talked about Jace's color and how we thought he was going to be dark like Jamie and Nolan. We had no idea that his color was a sign of trouble.

Having been up all night and not slept any that day, I decided to let Jace go to the nursery for the night. I felt bad to do it, but I knew we all needed some rest. I am so thankful that I let him go because early the next morning the nursery nurse noticed a change in his color. She immediately called Dr. Hansford, the pediatrician. Being a veteran nurse, Dr. Hansford knew to come quickly. She came in our room at 4:45 a.m. and told us that something was wrong with Jace and they were going to send him to UK. She didn't know what was wrong but that his color was not good indicating a problem somewhere. I just couldn't believe that something was wrong with our beautiful baby boy. I wilted at the news, but as usual Jamie was a rock.

We soon found out that due to the bad weather they could not fly Jace anywhere. UK didn't think that they could transport him by ambulance either. Our closest option was University of Tennessee in Knoxville. They said they would send a neonatal unit and a team to get him.
We spent the rest of the morning in the nursery by Jace's bed. Our family began arriving along with our pastor Bro. Billy and his wife Ann. We had prayer for Jace and I knew there was nothing we could do so it was all in God's hands from that point. We just had to have faith that it would be alright.

The doctor wouldn't release me so I had to stay in Somerset. Jamie, his dad and mom, and brother Jeremy followed the ambulance to Knoxville. Dad and Mom spent the night with me in the hospital. The hardest thing I've had to do up to that point was to say goodbye to Jace. Jamie said he would call as soon as they got there and let me know how he was. I would go to Knoxville the next morning when I was released. I believe that was one of the longest nights of my life.

I don't remember what time Jamie called, but he said that they had made it to Knoxville and Jace was doing good and they were running tests. Later he called back and said that there was something wrong with Jace's heart and they would be sending him to Vanderbilt Children's Hospital in Nashville. I later found out that he did not give me all the details of Jace's heart condition because he wanted to wait until he could be with me to tell me.

At 12:00 that night he called back to tell me that they were leaving Knoxville and heading to Nashville. Jace would be going by airplane. I was so worried about Jamie travelling for three more hours after not having any sleep. I called Bro. Billy to once again pray that Jamie would have a safe trip. Jamie said he would call me as soon as they got to Nashville. At 3:20 a.m. he called and said they were there. Jace was stable and in the neonatal intensive care unit.

When the doctor made rounds that morning they released me. Jamie's aunt Joan who lives in Somerset came to the hospital to pick me up. Dad and Mom were going home to get their things and then by our house to get some things that we would need. I wanted to get to Nashville as soon as I could. It was really hard walking out of the hospital without Jace. Joan and I drove to Columbia and picked up Jamie's aunt Bea and uncle Ralph and were on our way to Nashville.

The Big Day

Jace was born on Tuesday, January 27, 2009 at 6:30 a.m. at Lake Cumberland Regional Hospital in Somerset. He weighed 6 lbs. 2 1/4 ozs. and was 19 inches long. He held out as long as he could and actually came on his due date.

They were predicting the biggest winter storm of the season on Monday night so we spent the night in Somerset. I wanted to make sure I could get to the hospital if needed and to my doctor's appointment the next morning.

We met Jeremy, Danielle, and Shelby for supper and then went back to the motel for Taylor to swim. Judy came with us since Nolan was still in Louisville with Julia. Dad and Mom thought they would be fine to stay at home and come up the next day if they put me in the hospital after my appointment.

About 11:00 I got up to go to the bathroom and my water broke. I called the hospital and they told me to come on in. The lady asked me if I called from the parking lot because we got there so fast. My first question was if Dr. Crosslin was on call. He was the only doctor I had seen thoughout my pregnancy and I was worried he wouldn't be on call when I went into labor. Just as I feared, he had just gone home and Dr. Priddle was on call now.

The next few hours went pretty fast. I wasn't progressing very well so they gave me some medicine to speed up my labor. Jace did not like this and his heart rate began to drop. They stopped the medicine and said we would wait. Once I got my epidural things began to move quickly. The ice had started to fall and we were getting worried that Dr. Priddle would not get there in time. I felt so relieved when he walked through the door. He was very nice and I felt much better after meeting him.

The delivery went fine except for a few times when Jace's heart rate would drop. I had to lay on my side and they gave me oxygen. I remember one time looking up and seeing several people around my bed working very quickly. They were getting everything ready for a C-section in case I needed it. Thankfully, I did not need one. Jamie was wonderful. He didn't leave my side and fed me ice chips. Overall, the delivery wasn't bad. I did have to push more with Jace than I did with Taylor. Dr. Priddle said he was stubborn and didn't want to come out. He had a hard time getting past my pelvic bone. When he was born his head had an awful shape. It looked like a cone on top. Dr. Priddle said it was where he was stuck on that bone and it would go away and it did. He has a perfect shaped head now.

Despite the awful weather, everyone was able to make it to the hospital except for Pa Nolan. He was in Louisville at the hospital with his sister Julia. Julia died a little after 12:00 that day. This was a day of mixed emotions for our family. We were overjoyed at the birth of Jace and devastated by the loss of a wonderful lady, our aunt Julia. We were so sad that she never got the chance to see Jace. She was so excited when she found out we were having a boy to carry on the Cole name. She had bought Jace a bear for Christmas. Cheryl brought it to the hospital and it stayed on Jace's bed until we left. We named the bear Jewels. We thought it was close to Julia's name and because she truly was a jewel. We will treasure that bear forever.

Playing Catch Up

Since I am just starting this blog, I am going to do posts for the time we spent in the hospital. Hopefully this will let you see what we experienced during Jace's stay. It will take some time to get caught up, but I will do my best.