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.

Facebook | My Links

Facebook | My Links



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.