Our 1st Year

During the 1st year of their lives, I made a sign and took a picture of Taylor and Jace each month. I scanned Taylor's pictures and made an album of both their pictures for the 1st year side by side. It's neat to see how much they look alike. I will add Jace's remaining pictures in the upcoming months.

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1st Teeth

I was finally able to get a picture of Jace's 1st teeth tonight at supper. He has had them for a little while but I hadn't been able to get a picture of them. I am afraid he is going to be a biter. He has already bit my finger while I was trying to feed him. When his top teeth come in we may be in trouble.

Playing With Daddy

I caught Jamie and Jace playing tonight. Jamie is trying to teach Jace to sit up on his own. Jace is making some progress, but he wasn't too happy about Jamie having his toy and making him get it himself.

Play Time

This is Jace's version of pat-a-cake. I was happy to be able to get it on video. He usually grabs my hands and pats them together but he has recently started patting his own hands together. I just love this age. It seems he is doing something different everyday.

8 Months

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Jace is 8 months old today. Wow! How fast the time has gone! It's hard to believe how big he is now. He has had a rough time during his 8 months, but God has always been with him. We have had so many prayers answered during this last 8 months. Each time I look at him I realize just how blessed we are. He truly is our little miracle.

When Taylor was a baby we would make a sign each month her 1st year and take her picture. We decided to do the same thing with Jace. I've put together a slide show for his last 8 months. Taylor wanted to make his very 1st sign. None of us realized until it was too late that she put the wrong date on it. I'm sure Jace won't mind though. I plan to dig out all of Taylor's pictures, scan them, and make a slide show with both of their 1st year pictures. That may be a fall break project. I can't wait to see how much they look alike. I'll post it when I finish it.

Church Time

Tonight was a really big night for Jace and our family. This was our first time to get to go to church since Jace was born, other than the one time we went to chapel while he was in the hospital. It was so wonderful to get to take Jace to church. God has been so good to our family and answered so many prayers. Jace was so good during church and everyone was so happy to see him.

September 2009

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On the 2nd, Jace saw Dr. Janssen, his Cardiologist. He weighed 19 lbs. and was 26 inches long. Dr. Janssen said his echo looked great. He said Jace's heart looked as good as he could hope for it to look at this point. He said that he was doing so good that he would not need to see him again for 6 months. We were so shocked at this news. We have gone to Nashville every other week since March and at times every week. We will be so lost but are very thankful that Jace is doing so well. We talked with Dr. Janssen about Jace's next surgery. He said there is a really good possibility that Jace could have the next surgery next summer. He said they will schedule another heart cath. when we go back in March.

The day we had been waiting for had finally arrived. We could now pick Jace up under his arms. This meant that we could really start working with him on standing up and building those leg muscles.

On the 11th, Jace saw Dr. Hansford, the pediatrician. She could not believe how much he had grown. He received his first flu shot and first set of vaccinations. He cried some but I think it was more because they were holding him down. As soon as I could pick him up he was fine. Next month he will get his second flu shot, more vaccinations, and the synagis shot for pneumonia.

On the 19th, Jace attended his first Cole family reunion. He didn't know what to think about everyone. He cried at first when people would talk to him, but then he got used to everyone. It was so good for him to get to be around other people.

August 2009

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We came home on Wednesday, August 5 and returned to Nashville on Tuesday for a follow up appointment with infectious disease and Dr. Bichell. Dr. Bichell was pleased with the way Jace was doing. Infectious disease wanted us to continue his antibiotics for 2 more weeks just to be on the safe side. We could already see a big change in Jace and how he was feeling.

On the 21st, I met with several people from First Steps. Jace will be receiving Occupational Therapy, Speech Therapy, and Physical Therapy each once a week. They will be working with his eating and overcoming his oral aversion and getting him to sit up, roll over, stand,and eventually walk.

On Sunday the 23rd, Jace went to his first outing. We took him to Barry and Cheryl's for Uncle Marshall's birthday party. He had a really good time. I was pretty nervous since this was the first time he had been around very many people.

On Tuesday the 25th, we returned to Nashville to see infectious disease. We got the wonderful news that his PICC line could be taken out and the antibiotics stopped. We were so glad to hear this. Life was beginning to get back to normal for us.

July 2009

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After Jace came home from the hospital he was very fussy and not sleeping well at night. This was not like him at all. We just figured it was because he was still recovering from his surgery.

On Thursday, July 9, Jace saw Dr. Bichell for a check up. He seemed to think the fussiness was probably just from recovery. On Sunday, I began to notice there was a tiny spot that looked like a bubble forming on his incision. It looked alot like it did from the last surgery so I didn't think too much of it.

On Tuesday, July 14, Jace saw Dr. Hansford for a follow up appointment. That morning the bubble on his incision was beginning to grow. When Dr. Hansford saw it she immediately called Dr. Bichell. He told us to come to the hospital emergency room and they would contact him when we arrived. He said to come prepared to stay a few days. Little did we know that those few days would turn into three weeks.

We arrived at the emergency room about 6 p.m. The doctors were sure it was some type of infection and immediately started him on antibiotics. Around midnight we were finally moved to the 6th floor. We were back in the same room we had just left a few weeks earlier.

The next day Dr. Bichell lanced the spot on Jace's incision to let the infection drain. They later placed a wound vac on the incision to help suck out the infection. The infectious disease doctors were in daily to check on him. They could not tell us for sure what type of infection it was because nothing was growing on the culture. They just assumed it was probably some type of staff. They inserted a PICC line and began treating him with antibiotics through it.

The wound vac helped but Dr. Bichell was still not pleased with the way the incision looked. On July 24, they took Jace back to surgery to reopen his wound and clean it out good. They also replaced the wires around the sternum. Dr. Bichell said this way he would know that the infection was cleaned out. This would also mean 6 more weeks before we could pick Jace up under his arms. He said they would watch Jace for 2 or 3 days and if he had no fever we could go home.

On Sunday, we were told we would probably be going home the next day. Then Jace's incision started to drain. They told us as long as it was draining we would not be allowed to go home. So began the long wait for the drainage to stop.

After 3 weeks, we were finally released from the hospital on August 5, the first day of school. Jace had to go home with his PICC line and we would have to give him antibiotics 3 times a day through the line. They trained us on how to give them. It was very stressful because everything had to be so sterile. They told us any germ that touched his port would end up in his blood stream. We did survive it though.

Our 1st Day Home

Jace has had a pretty good first day at home. He still doesn't feel too well so he has laid on his boppy pillow most of the day and rested. We have attempted a bottle three times so far today. He is teething so he wants to chew on the nipple. He is doing better about not gagging on it. It is going to take some time, but he will get there. He's still not real sure about the bananas. He's not liking them too much or atleast the texture of them. One small step at a time. It has been a pretty quiet and peaceful day so far.

Day 6

We're at home!!!! I think I am still in shock at the thought that we are actually at home. I never dreamed Jace would do this well. I was expecting to stay atleast 10 days. I've said it many times before but Jace is definitely proof that prayer works.

Not only are we at home, but Jace was approved to start taking a bottle and baby food. The speech therapist came to our room for his 10 a.m. feeding this morning. She let me give him a bottle and she watched how he did. He did fine swallowing, but he is still not too sure about having anything in his mouth. She suggested that we give him a bottle at the beginning of each feeding. What he won't take from a bottle we will give him through his feeding tube. It will take some time for him to get used to the bottle, but he will eventually get there. I never imagined how exciting it could be to watch your baby take a bottle for the first time. For Jace this compares to Taylor taking her first steps. I feel like he has taken a major step today in overcoming a huge hurdle. Way to go Jace!!!

After giving him a bottle, she decided to try and give him some baby food. She got a jar of bananas and put some on her finger and put in his mouth. He gagged a time or two, but I think he liked the taste. She wants us to try giving him some type of fruit 3 to 4 times a day to get him used to the baby food. He has had such a tiring day that I think I will wait until in the morning to try anymore food.

We want to thank everyone for the visits, calls, and most of all prayers. You will never know how much your love and support through Jace's sickness has meant to us.

Day 5

Chest tubes are gone and it's time for a nap with my alligator


Chest tubes are gone!!! After morning rounds they told us that Jace's chest tubes would more than likely be removed later this morning. Mom and Dad stayed with Jace while Jamie, Taylor, Nolan, Judy and I went to morning chapel services. When we got back they had just finished removing his tubes. They also completely removed his oxygen today. All that is left now is an IV in his foot that they will probably leave until we go home. The plan for tomorrow is to have the speech therapist do an evaluation. Hopefully they will try Jace on a bottle tomorrow. The doctor said he is old enough now to be getting some solid foods. We are anxious to see what happens tomorrow. What should be something so natural for a baby has turned into a major hurdle for Jace. He'll get there though.

Jamie's cousins Cheryl, Kayla, and Lindsey came to see Jace this morning. This afternoon his aunts Joan and Bea came for a visit. Taylor ended up going home with Bea to stay for a few days. I think she was ready for a hospital break. It seems strange her not being here now. Hopefully in a few days we will be at home again. We can't wait for Jace to get fully recovered so we can take him out and show him off. It won't be too much longer now.

Day 4

5 months old today


enjoying my new room

We are one step closer to home!! This afternoon we got to move up to the 6th floor. It is so much nicer being on this floor. Our room seems huge. We have our own bath with a shower and Taylor and our parents can now stay with us as much as they want during visiting hours. In ICU you can only have 3 visitors at a time in the room. Several of Jace's former nurses have stopped in today to glance at him. They all have been so surprised at how he has grown. Some say they would never have known him without seeing his name or us. His nurse today in ICU said he looked like a Mack truck. He weighed 16 lbs. 2 ozs. this afternoon. I don't think being without formula for a day or so has hurt him too bad.

Jamie and I got the chance to spend some time with Taylor this afternoon. We took her to lunch and did some shopping for school clothes. It was nice to have some time with her.

Jace turned 5 months old today. It would have been nice to have celebrated it at home, but we are thankful to get to celebrate it here. We started a tradition with Taylor that we have carried over to Jace. Each month of her first year we would make a sign with her name, date, and how old she was and take her picture. We have also been doing this with Jace. I am looking forward to comparing the pictures to see how much they look alike at each month.

Jace is progressing so well that they are talking about the possibility of him being ready to go home on Monday. It blows my mind that he will be ready to leave after such a major surgery in just 5 days. Our prayers are definitely being heard. Both Jace's Cardiologist and Surgeon have mentioned that they may work on his feeding before we go home. They are wanting to see if he is ready for a bottle now. If they do that then we may have to stay in the hospital a little longer. However, it would be worth spending the time to get to take him home on a bottle. This is the next obstacle he will have to overcome. Please continue to remember our family in your prayers.

Day 3

Getting to hold Jace for the first time after surgery. Taylor can't wait until she gets to hold Jace again.



Jamie holding Jace for the first time after surgery

I am glad to be able to say that today has been a wonderful day. Jace has rested most of the day. Lots of lines and wires are now gone in preparation for the move out of the PICU. Around lunch time he had the RA line from his right side removed along with the pacer wires. A little while after that he had the subclavian line in his left shoulder removed and the femoral art. line in his right leg removed. I can't really tell you alot about what all these things do, but it is great news to have them gone.

Around 6:00 Jace became very fussy with what I think was a belly ache. With so many lines removed, I asked if I could hold him. That was just what he needed. He had his favorite pillow to lay on (mine of course), mommy to hold him, feeding time, and direct view of the television. Within minutes he was calm as could be. Jamie and Taylor went with his parents to eat supper and celebrate their anniversary. So when he got back he gladly traded me spots to let me eat.

It's almost 10 p.m. now and Jace is asleep. We are still waiting on a room to open up on the 6th floor. We have been blessed so far to be able to get a sleep room each night. I can sleep in Jace's room and Jamie has a small room on this floor with a twin bed, tv, and bath. He says it sure beats sleeping on this concrete floor or in the waiting room. We are on the waiting list for a room at the Ronald McDonald House but so far nothing has opened up yet. That way Taylor will be able to be with Jamie at night. They do not allow children to stay in the hospital after visiting hours are over at 9:00 p.m. Right now she is staying with our parents at the motel. We are so fortunate to have both sets of parents here with us. They help occupy Taylor and their love and support have helped us so much.

They say the first 48-72 hours after surgery is the most crucial. Tomorrow will get us to that point and so far so good. We appreciate your prayers more than you will ever know. Jace is definitely proof that there is still power in prayer. I know it each and every time I look at him. Please continue to pray for us.

Day 2

Jamie,Taylor and Jace before Taylor had to leave for the night


Taylor reading Jace her favorite story about a boy with a special heart. A lady who works here at the hospital wrote this book with lots of pictures of things in the hospital. We were able during our last stay to get both of them a copy of the book and have it signed by the author.




Finally resting peacefully


Jace had a pretty restless morning. They told us after this surgery they have lots of pressure that causes pain almost like migraines in babies. It takes some time for them to adjust to the new route of the blood flow. They gave him fentanyl for the pain but that did not seem to help. They also tried morphine. Eventually they gave him some adavan and that seemed to help relax him. He just could not seem to relax enough to rest from about 2:00 a.m. until about 6:00 a.m. After that he did relax and has had a much better day. He has been able to rest most of the afternoon. His vitals are stable. The temperature is gone, blood pressure is good, and oxygen saturations are doing good. He had his catheter removed along with the oximeter that measures the amount of oxygen his brain is getting. They are gradually started him back on his regular medications and will begin feeds a little later. Once he settled down it has been a fairly uneventful day.

It is a little after 9:00 p.m. and they have started his continuous feed for the night. He is resting now and hopefully will have a peaceful night. He has done wonderfully today considering he is just one day out of surgery.

We just got word about 10:00 p.m. after rounds that Jace's name is going on the bed board. This means that when a room is available he will be leaving the PICU and going up to the 6th floor. They said it will probably be sometime in the morning. He will also get three more lines removed before leaving this floor. He is doing exceptionally well at this point.

Surgery Day

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We arrived at the hospital at 10:45 this morning. We checked in at the waiting room and got Jace admitted. Finally, around 1:25 the nurse came out to get us. They weighed Jace, took his blood pressure, and got him changed into hospital pajamas. We sat in the holding room with him until Dr. Bichell was finished with his surgery. At 3:00 we met with Dr. Donohue about his anesthesia. At 3:25 Dr. Bichell met with us to discuss the surgery and get a consent form signed. After meeting with him they took Jace back to surgery at 3:40. At 4:45 the nurse called to let us know that the lines were in and the incision had been made. At this point everything was going smoothly. At 6:15 we received a call that they were still working on the repair but Jace is tolerating everything well. Dr. Bichell came out at 7:00. Surgery is over and things went great. Jace will be in recovery in a little while. They moved Jace to the Pediatric Critical Intensive Care Unit (PCICU) around 7:20. We were still in the waiting room thinking he would go to a recovery room on the 3rd floor. Finally around 8:30 we found out he was already in his room. We were really surprised at how well he looked. There was minimal swelling and the incision looked really good. He had a slight temperature that they monitored but they said that was to be expected after surgery. The highest it reached was 102.2, but Tylenol brought it down pretty quickly. They gave him fentanyl to help keep him sedated. However, he kept trying to wake up and move around so they changed to morphine which seemed to help. At 12:20 they came in and removed the ventilator. I couldn't help but tear up when I heard him cry. It was such a wonderful sound. His oxygen saturations are within range, blood pressure is good, temperature is much better and he is resting. It's almost 1:30 a.m. and I am going to try and get some rest. Thanks to everyone for your prayers. We had lots of family and friends with us today and we are so thankful for your support. I'll post pictures from today at some point tomorrow.

Pre-Op Day

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We left home at 6:15 this morning for Jace's scheduled pre-op tests at the hospital. All his tests came back great. His blood pressure was fine, oxygen saturations were great, EKG looked good, blood work was good, chest x-ray looked good, and urine analysis was fine. He weighed in today at a whopping 16 lbs. 6 ozs Dr. Janssen said Jace was beginning to look like a linebacker. We waited for several hours to meet with Jace's surgeon, Dr. Bichell. His surgery went longer than expected so we will meet with him in the morning right before surgery. I think we finally got to leave the hospital at 3:30 this afternoon. We have to be at the hospital at 11:00 in the morning for Jace's surgery. Please continue to remember Jace in your prayers.

Our 1st Family Pictures

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We had our 1st family pictures made at home a couple of weeks ago. Thanks Jon and Kayla. You did an awesome job!!

Father's Day

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We put this together for Jamie for Father's Day


We had a great day. Jamie didn't have to work so we got to spend the day at home relaxing with our families. We had lunch with his parents and his brother's family. Dad and Mom came over so we got to spend time with my dad. This afternoon Jamie actually got in the pool with Taylor. We grilled out hamburgers for supper and spent the rest of the night watching tv together. Life is good!!!

Weekly Weigh-In

This was taken just before leaving for the doctor's appointment this morning


Since we were not having surgery this week, Dr. Janssen wanted Jace to see his Pediatrician to check his weight, heart and lung sounds, and oxygen saturations. He checked out great and weighed in at 15 lbs. 6.2 ozs. He had gained 8 ozs. in seven days. Dr. Hansford told us that she currently has another baby with HLHS but he has not been able to gain weight like Jace has and is not doing as well as Jace is. We are so thankful each day for the progress Jace is making.

Disappointing News

We got a call from Dr. Bichell's office late this afternoon to let us know that Jace's surgery was being postponed until next Wednesday. There are other babies in the hospital right now that are needing surgery immediately so Jace was bumped off the list. We are so thankful that he is well enough to wait but the waiting is really hard. I know everything happens for a reason and as others have pointed out to us that this just means an extra week of prayers being said for him.

Taking a Break

We spent most of today getting things ready for the trip to Nashville. However, we did take a break to let Taylor get in the pool. Jamie put Jace's feet in the water but he wasn't too excited. He didn't know what to think about the cold water. He was fine for a few minutes but then he started to cry. I'm sure by next summer he will love it as much as Taylor does.

Weekly Checkup

Jace went back to Somerset to the Pediatrician for his weekly checkup today. He weighed 14 lbs. 14.2 ozs. Dr. Hansford said he was doing great. Everything seems to be right in line for surgery. Now all we have to do is wait.


Dr.Hansford checking Jace out



look how big I am getting

A Day of Visits

Today was a special day for Taylor and Jace. They got to spend part of the day with their two great-grandmothers. Jamie's memaw was at his mom and dad's house so we took Jace to see her. She had seen him only a few times before today.



When we left there we went to Russell Springs for Jace to meet my mama for the first time. She didn't know we were coming so it was a big surprise for her. She had only seen him in pictures. It was a beautiful day so we enjoyed sitting outside on the porch with her. We wanted to make sure that both grandmothers got to spend time with the kids before Jace had his next surgery.

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Here is a link to my facebook page that has some videos of Taylor and Jace. There is a video of pictures of Jace's entire 1st hospital stay.

Lots of Doctor Appointments

As you can imagine Jace has had lots of doctor appointments over the last couple of months. I am going to try and do one post of these appointments to show his weight gain and progress. You may notice that his weight has fluctuated at some points. I think this is mainly due to the different scales being used at different offices.

March 9 Dr. Patterson Pediatrician 7 lbs. 1 oz. Somerset

March 11 Dr. Janssen Cardiologist 7 lbs. 4 ozs. Nashville

March 17 Dr. Hansford Pediatrician 7 lbs. 11.5 ozs. Somerset

March 26 Dr. Janssen Cardiologist 9 lbs 8 ozs. 21 1/4 inches long Nashville
Hematology blood draw

March 30 Dr. Neblitt General Surgery G-tube replacement to mini button Nashville

April 1 Dr. Hansford Pediatrician 9 lbs. 1 oz. Somerset

April 2 Dr. Paolicchi Neurologist check up for seizures Nashville

April 7 Dr. Janssen Cardiologist 9 lbs. 11 ozs. 22 inches long Nashville
Chest x-ray some extra fluid found - increased lasix

April 10 Dr. Hansford Pediatrician 9 lbs. 13.4 ozs. - ear infection Somerset

April 15 Dr. Hansford Pediatrician 10 lbs. 4.9 ozs. Somerset

April 22 Dr. Janssen Cardiologist 10 lbs. 13 ozs. 22 inches long Nashville
Ultrasound check blood clot in leg - IT'S GONE!!!
Hematology removed sub Q port - no more shots
Swallow Study wouldn't swallow enough continuously to pass

April 27 Dr. Hansford Pediatrician 11 lbs. 7.9 ozs. Somerset

May 5 Dr. Janssen Cardiologist Hospital Stay - heart catherization & MRI Nashville
May 6 EEG & upper GI

May 12 Dr. Patterson Pediatrician 12 lbs 11.2 ozs Somerset

May 20 Dr. Janssen Cardiologist 13 lbs. 3 ozs Nashville

May 27 Dr. Hansford Pediatrician 13 lbs. 12.4 ozs Somerset

June 1 Dr. Janssen Cardiologist 14 lbs 2 ozs 24 inches long Nashville

Finally at Home

Jace did wonderful on the ride home. He actually slept most of the way. We arrived home to balloons on the mailbox and porch. Several people had brought food for us. That was so nice not to have to worry about food and having to go to the grocery. Mom and Dad had come over earlier and cleaned out the refrigerator since we had not been home in six weeks. That is my least favorite job so that was a nice gift. Stacy came out and brought his feeding pump and the supplies we were going to need. The pump was exactly like the one we used at the hospital so that was a big relief. It was pretty overwhelming to make sure we had everything we would need and get comfortable with his medication. The hospital always had the medicine ready and all we had to do was give it to him. Now we would have to draw up the medicine too. However, things did go pretty smoothly that first night at home. Needlessly to say I didn't sleep too much that first night. I think I just laid and looked at Jace most of the night, but atleast I was in my own bed and at home.

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.