Bronson 2 years old—March 2003

I realized our unborn baby had something wrong with his heart when I had the 18 week ultrasound on October 18, 2000. The technicians never said a word to me about anything being wrong. I just had a very strong feeling that I could not get rid of that something was terribly wrong with our baby's heart because of the many pictures they kept taking of the heart and the additional technicians that came into the room to take a look at the ultrasound. I did ask if everything was okay when the ultrasound was over and the technician told me that she could not say and that the doctor is the person that can tell those things. They did ask me to go back out in the waiting area to make sure they had all the pictures that they needed. I went out to the little waiting area and waited for a few minutes and then they told me I can go because they had all the pictures that they need.

I left that hospital very upset and I drove home with the ultrasound photo and I cried some on the way home but made sure I stopped before getting home so my husband wouldn't suspect that anything may be bothering me. My husband looked at the photo and asked how the baby was and I started crying all over again and I told him how something is wrong with his heart.. I just know it!!

Everyone that I told my feelings about the ultrasound to said that everything will be fine and that I'm just jumping to conclusions over the amount of photos that were taken. I was hoping they were right but I just could not shake this feeling I had.

The next week I went in for my regular OB check up. Well, right away they asked if my husband was there with me and I said "no" and then they had me go into the midwife's room right away. This was not usual routine. Normally you wait in the waiting room. On this day I had a midwife I have never met yet and right away she told me that our baby had a heart abnormality. I told her how I just knew something was wrong and she said her apologies. The midwife then told me how we will now go to Vanderbilt University Medical Center, in Nashville Tennessee for a second, "higher level" ultrasound because sometimes they make mistakes on ultrasounds.

On November 2nd, my husband and I went to Nashville, to Vanderbilt, to the OB clinic and had the ultrasound. The doctor confirmed a heart problem and then she told us of our options and how she'd like to have an amnio done to rule out if the heart condition is lethal or not. I consented to the amnio and afterwards we left and came home. We didn't say much the rest of that day and we didn't yet tell our other two children.

On November 7th, we went back to Vanderbilt for my appointment with the pediatric cardiologist. She performed the echo and she confirmed a heart defect. We then all sat in the room with the cardiologist and she explained the difference and risks of a heart transplant vs. the 3 stage open heart surgeries. I would be coming to see the pediatric cardiologist every so many weeks for more echos of our baby's heart, up until it was time for him to be born and he would now be born at Vanderbilt. I was officially finished with our local hospital. It was later this evening that my husband did a search on the web of heart conditions and he found a condition called "hypoplastic left heart syndrome" and we were pretty sure that had to be what our baby's condition was, from the way that the cardiologist described the defects. We then read many (sad and happy) stories of a lot of children and we were amazed by how so many are living! I also think it was at this time we decided to go for the 3 stage surgeries.

This was a very difficult time for us all. It was so hard to imagine anything being wrong w/ our baby because of how active he was inside and because of how wonderful he was growing and also because of how wonderful his heart sounded at every doctor appointment. I had non-stress tests at every doctor visit also. I remember Bronson giving the doctors a very hard time when it came to the ultrasounds and non-stress tests. He just did not like being messed with and I found this quite comical.

Some time before Bronson was born we got the tour of the labor and delivery unit and the NICU. I had a hard time "believing" our baby really would need to be in the NICU once he was born. Seeing the NICU was hard for me... all those tiny babies.

On March 9, 2001 I woke up in the middle of the night in labor. I waited an hour to make sure it was the real thing because I've been having Braxton-Hicks contractions through out this pregnancy and they were very strong every time they came. After the hour was up I woke up my husband and he woke up our other 2 children... this was around 3:00 a.m. Then I made phone calls to get someone to watch our 2 kids and to have someone be in the operating room with me for the c-section. We dropped our kids off at a friend's and another friend followed us to the hospital. The hospital is an hour away. Before we left the house I also called the hospital and let them know we were on our way and that our baby had a heart condition and that a c-section was planned and who the doctor was.

At 6:43 a.m. Bronson was born screaming his head off!! That made me feel kind of good. He weighed 9 pounds 1 oz and was 20 inches long. The NICU team took Bronson to their corner and later on they showed him to me for a minute or so and he was wrapped up like a burrito and he looked "blue" to me. Then they got him down to NICU.

On March 13th, Bronson—4 days old—had the first open heart surgery, the Norwood. Bronson "flew" through great the first 3-4 days after surgery. He was coming off of certain medicines real well. On the night of the 4th day things took a turn for the worse. My husband could tell something wasn't right with Bronson and he expressed his concerns to the nurse that was taking care of Bronson that night and the nurse just said Bronson is fine. My husband wasn't very happy. The next day I called to see how Bronson was doing (before we came there) and the first thing I remember hearing was that Bronson has a chest tube in. Bronson developed "chylothorax" and "pleural effusions" and little did we know but this was just the beginning of a roller coaster ride for Bronson.

April 1, 2001 Bronson's heart stopped 3-4 times in a row. The doctors luckily revived him but they didn't give us any guarantee if he'd make it until the next day. Bronson pulled through, thankfully!

On April 3rd, country music singer Trace Adkins came to the hospital to visit the sick children. This was such an aggravating day for me. I could not get in the PICU on this day and I remember feeling "stuck". Bronson wasn't getting any better and he wasn't getting any worse... he was just laying there.

On April 9th, 2001, Bronson had to go back to surgery. He had to get reopened because he had blood clots in his arteries and this was causing the build of up fluid (edema) and the pleural effusions and the reason he could not come off of the ventilator. The surgeon gave us a 50/50 chance of Bronson making it through this risky surgery. I was more nervous about this surgery than what I was the Norwood. Bronson was one month old this day also.

May 1st, Bronson went to surgery again to have his right diaphragm tacked down. This would hopefully get him off of the ventilator soon.

Bronson was extubated and re intubated several times between May and June of 2001. this was very depressing for me, because with each "failure" we'd hear "tracheostomy" and I could not accept that for Bronson or for myself. Towards the end of June 2001 Bronson got one last chance at coming off of the ventilator and if he then didn't come off he would have to have the tracheostomy surgery. We prayed and prayed so much during this time and we were so thrilled when Bronson did come off the ventilator for good!!! It seemed like a "dream".

Not too long after Bronson came off of the ventilator I got the call to pack my bag—it was time for me to come stay with Bronson in the PICU to learn how to take care of him before he can go to the regular pediatric floor. I was nervous and thrilled at the same time. The biggest things I had to learn was how to put in the NG tube and Bronson was on Lovenox (blood thinner) shots 2 times a day so I had to learn how to give those. The shots were my most nervous thing to learn. The needles were so big and Bronson was so tiny and thin. He only weighed 10-1/2 pounds at this point. Also I had to get used to not having the monitors above us to tell how Bronson's heart rate and breathing, etc.. were doing.

Bronson and I stayed together in the hospital about a week or so and then we finally got to take him home for good. I asked for smaller needles for giving Bronson the Lovenox shots and thankfully they gave me the insulin-sized shots for Bronson. Then I wasn't as nervous.

Bronson did wonderful at home and he loved going to church. At first we didn't take him out much... to church or to his doctor appointments was about all. It was July and very hot outside. Bronson enjoyed his physical, occupational and speech therapies.

In September of 2001, Bronson had the 2nd open heart surgery, the Glenn. I was very nervous and I think the hospital staff may have been also because of how long it took Bronson to recover from the first surgery. Bronson flew through the Glenn and we were back home within a week. Bronson was a crabby baby to say the least but I had come to expect this from other parents experiences with their child after the second surgery.

It was now October and Bronson's incision had a bubble forming on top of it and he was still very irritable. Every time we picked him up he would just scream. We brought Bronson to Vanderbilt one evening to get looked at and Bronson ended up getting the bubble on his incision drained and he got put on antibiotics. The following day we noticed a difference in Bronson—he felt so much better since getting that bubble drained. The antibiotics unfortunately didn't help and the pediatrician put Bronson on a different antibiotic, which didn't help either. The bubble was growing bigger again. October 11th, it was the 3 week post surgery check up time with the cardiologist. Bronson was doing very well, except for that incision. Thoracic surgery personnel came and saw Bronson and tried draining the bubble. A lot came out but there was still a lot of "junk" in there and they said it was underneath the incision so they admitted Bronson right then. He and I spent a week in the hospital and Bronson was on I.V. vancomycin antibiotic. After the vanco treatment Bronson's incision was fine.

On March 9, 2002 Bronson turned 1 year old!!! We got him a rocking horse cake and celebrated as a family. Bronson was still on the NG feeding tube at this time. We were now waiting on surgery date for getting a "g tube" put in and taking out the NG tube. Bronson was getting stronger and the tape would not hold on Bronson's face anymore and so everyday I was putting back in the NG tube in Bronson. Bronson was getting bigger and harder to hold down to get the tube in, as I did it all by myself.

On March 22, Bronson got put in our local hospital for rotavirus. The next day we got transferred to Vanderbilt because they have more experience with Bronson and his health. We spent the weekend in the hospital so that Bronson could get rehydrated and get rid of the rotavirus.

On April 4, 2002 Bronson got his g tube surgery. I was so relieved and happy over this. My birthday was April 5th, so I took this surgery as a wonderful gift. Such a relief knowing I didn't have to torture Bronson with the NG tube anymore.

From this point on things have been going well. In May of 2002 Bronson got switched from the Portagen formula to Pediasure formula via g-tube. Now Bronson was gaining weight great and his development was coming along better.

October 2002: Bronson (19 months old) started walking!!!! this was our big goal for Bronson.

Currently, Bronson is finished with physical, occupational and speech therapies. Bronson is "nibbling" on table foods and for Bronson that is a big improvement. Bronson is still totally dependent on Pediasure and the g-tube (mic key button), but he is slowly coming along at his pace with the eating. We are looking at having to have the Fontan in March of 2004, when Bronson turns three.

Bronson is such a happy child and so funny! He's got us all wrapped around his finger and something about him just attracts people. He's such a blessing to us all and were thrilled to have him.