Texas Children’s Hospital Houston

James is now three and a half years old and is doing great. He is a boy full of energy and definitely keeping up with his big brother. If you didn’t James had a heart defect, you would never be able to tell.



James 3 1/2 years old

On Wednesday May 23rd, 2018 we went to Texas Children’s Hospital in Houston again. Yes, again. We have been preparing for James Fontan surgery and we believed he was going to have it this summer. Dr. Forbess who performed James previous surgeries is not at Dallas Children’s Medical Center anymore, he got a new job in Chicago and left. We really like Dallas Medical Center and we liked Dr. Forbess.


Another option we have considered and our second choice is to have James surgery performed in Houston by Dr. Heinle. That is why we were at Texas Children’s Hospital again. We met with Dr. Heinle (surgeon) and Dr. Moodie (cardiologist), they told us what they believe is best for James at this time. They think it is better we wait a year so James can grow and see if his blood pressure goes down. Since James had quite a high blood pressure in his lungs it created lateral veins in his heart. Dr. Nugent at Dallas Children’s MC was able to fuse some of James veins during the heart cath last year, but he created more this year which Dr. Nugent again could fuse when he had another heart cath this past March. In Dallas they said his blood pressure has gone down and weight is up, but not quite as much as hoped. James also started on a new meditation that will help the blood pressure go down, so they wanted to monitor that for a little longer.


We really liked Dr. Heinle, Dr. Moodie, and the rest of the straff at Texas Children’s Hospital. We made our decision. Now we know when James next surgery will happen. It will be next summer in Houston. 

Almost 9 months old

James will be 9 months old on Tuesday. He is doing really well and is growing a lot. He is only seeing his cardiologist every other month and his eating has improved tremendously. He still has the tube in his nose and get his formula and medicine through it. He has started eating really good, and he is eating all kinds of fruits, vegetables, and meats. He is not drinking enough yet so that's why he is still using his tube. He is not vomiting much anymore either. We are very pleased with his improvements. He was measured and weighed on Saturday when he received his vaccination for RSV (respiratory syncytial virus) and he weighed 18 lbs and 3oz (8236gram) and he measured 27 inches (68cm). He will receive 4 more shots of the vaccine this winter because they only last for a month and he is a high risk baby and needs to be protected against this virus. On Tuesday he has his 9 month check up with his regular pediatrician to see if he is following the growth charts. Happy Thanksgiving to everybody!

James 9 months old

Home at last

It has been 2 weeks since James had his surgery and he is doing great. We brought him home on monday night just in time to celebrate his big brothers second birthday. Tomorrow James has an appointment to make sure he is doing good after surgery, so we will be going back in to Dallas again. He is happy to be home and he bringing more joy in our home. We have another step out of the way and the future is looking brighter. We are so happy that we decided to have James surgeries at Children's Medical Center. Dr Forbess has done a great job, all the doctors, nurses, therapists, and technicians has been amazing. Thank you all so much.

Feeling better

We are two days after his surgery and James is getting better, he is looking more like himself now. He is still in some pain and getting quite a bit of medicine. The doctors have said that with the new anatomy of his heart there will be a completely new pressure in his head. It will take a few days to get used to so his head is probably hurting a lot. His chest and the tubes are probably not very comfortable either. He is looking good though and he is eating his regular dose of formula again. So hopefully we are back to being happy little James again in just a few days.

Moving up

We are now on the 8th floor at Children's Medical Center. James was moved into a new room while recovering from his surgery. He did not need to stay in the cardiac intensive care unit any longer. He is doing really well and we were all surprised when they said we were moving up. His breathing tube was removed last night, he still has two drainage tubes from his chest. He is receiving oxygen to keep his levels high until he is more awake. He is still on some pain medicine and is staying asleep most of the time. He is a real fighter and we are ready to have him at home soon. Thank you Dr. Forbess and the amazing cardiac team at Children's.

All done

James surgery is done, we got to see him rolling by from the operating room. They said that he did really well and we will be able to go see him soon. We spoke with Dr. Forbess and was pleased with the results. The breathing tube will be removed tonight and he has two drainage tubes coming from his chest. Can't wait to see him.

Time is here

We have reached the time for James next surgery. He is having his Glenn procedure tomorrow. He is Dr. Forbess' second case of the day so our time is set for 12pm tomorrow. James had his pre op today and everything looked good. They checked his oxygen level, his blood pressure, temperature, height, weight, they took blood samples, urine sample, and he had an x-ray. We are all set for tomorrow, the only thing that will stop us is if a more serious case must come before us. but we hope that it won't happen. They will connect the superior vena cava with the lung arteries. The surgery will take approximately 4 hours and they said that recovery might only be 5-7 days in the hospital. I will keep everybody updated on how everything is going tomorrow. Keep us in your thoughts.

Click on the links below for a better explanation.

Glenn procedure

superior vena cava

Heart Cath

We are in recovery from having James heart catheter done today. He is still sleeping, but will wake up soon. His leg needs to be still 4 hours after the catheter so he needs to lay flat and his leg is tied down. Everything went really well, but when the anesthesiologist was taking out his breathing tube he stopped breathing and they had to give him medicine to relax his lungs and they gave his some help getting his breath back. The doctor believe that he still have some traces left on his lungs from the flu, he had in the beginning of May, and they believe that is why it happened. Therefore they have decided to wait a few weeks with the Glenn surgery. Hopefully we do not need to wait to long for the procedure. But better to play it safe than take any risks. We will stay the night at the hospital and then we will all go home in the morning. We will post the new surgery date as soon as we have gotten it scheduled.

Ready for heart catheter

Ready for next Surgery

In only a week we are going back to Children's Medical Center in Dallas for preparation for James Glenn procedure. We have heard that success rates for this procedure is 95% and we are feeling pretty good about this surgery. What this procedure will do is to remove the tube that is directing blood from the right side of James heart to the lung arteries and instead the surgeon will connect the superior vena cava directly to the lung arteries so the blood comes directly to his lungs. That mean James heart will get less of a load and will only pump blood to the body. This will save alot of work for the heart and James should get more energy after this surgery. We are going to the hospital on Tuesday to get a heart cath done so the doctors will get a clear picture of James' heart. We will probably stay the night and come home Wednesday. Then we are going back on Friday for pre Op, we will get an x-ray, check his vitals and get all the information about his surgery. Monday the 13th is the big day. We are the second surgery of the day by Dr. Forbess, but we still have to be there early that morning. James has been doing great in general. He was 14 lbs in weight and 25.5 inches tall on his 4 month check up with the pediatrician last week. His cardiologist says he looks good and is ready for the surgery. I will keep everybody updated on how it is going.

James 4 months old

Getting better

We are still at the hospital as of Sunday morning. James has been doing well and he hasn't gotten any worse. He still has a cough and he still has a stuffy nose. He is back up on his feeding with almost the same formula as he had when he was well. We started giving him 10 calories per fluid ounce yesterday, then he moved up to 19 cal/fl oz, then 24 cal/ fl oz, and this latest feed he got 27 cal/ fl oz. They will keep him at that for a little while and then he will get back at 30 cal/ fl oz, which has been his normal energy intake. The doctors came by earlier and they though that he was doing really well. They said either he did not get a serious case of the flu or he is a true fighter, we decided to go with the latter. He really is a fighter, how much can you go through and still have a smile on your face? He is doing so great and we are very proud of him. We are also allowed to bring him home today, we are just waiting to see how his feedings are going. He might stay until tomorrow morning, just to be on the safe side. He has been away from the house for almost 72 hours now, but be are so glad that we found out that he had the flu and got help so quickly. Children's medical center has really taken care of us and all the staff is amazing. We are so grateful to have them in our family. We tried to give him the bottle this morning, but he was not interested. We will take it slow and hopefully get back to it soon.

James 10 weeks back at CMC Dallas

Back in Dallas

James has been having some trouble eating and has been throwing up alot lately, so at our regular cardiology visit today our cardiologist decided to admit James to Children's Medical Center in Dallas this afternoon. He has had a cough and his nose has been running a few days. Since he is vounerable to infections, he will be here for atleast 24 hours for observation. He is on a light diet and will be closely monitored. He has also lost some weight these last couple of days. We are just hoping he can fight this off real quick and get back to growing and eating. He was over 5 kilos for the first time this monday, but right now he is slightly under. We hate to be back here, but is feels good to know that he is in good care and we can get all questions answered. Maybe we can also get some help to get him to eat more. He only had one bottle all by himself and then it kind of leveled out and actually decreased. Well, we are back here in Dallas and we will get well soon and go home.

Recovering from Norwood procedure

James has recovered well and he is waking up periodically. They sewed up his chest yesterday and two of the four tubes he had in his chest are removed. He is also getting less and less medicine. The doctor told us that his breathing tube will be removed sometime this weekend. After they remove the tube he will be able to start getting breast milk again. He will either eat it from a bottle or he will get it through a tube in his nose. He is not as swollen anymore and his numbers looks better. He is still doing very well from what all he has gone through and we are hopeful that everything will keep moving this direction. The doctors are saying that his recovery time will be somewhere between 6 to 8 weeks before he can come home if everything goes smoothly. With the most crucial surgery behind us, the Norwood, we are now only focusing on James' recovery and him getting bigger and stronger!

Norwood update

We have received updates all through the day since they took James at 9 o'clock this morning. We received updates at 10:24, 11:43, and 12:56, saying that everything was going according to plans. At 2:28 we received the call saying that they had removed him from the heart bypass machine and his newly renovated heart was beating by itself. I also ran into one of the attending physicians that informed me that the surgeon was finishing up the Norwood (Sano). She had been watching the surgery in a different room through a camera that one of the doctors in the operating room was wearing. At 3:04 we were informed that the surgery was done and Dr. Forbess was on his way to come in and speak to us. He came in at 3:28 and told us exactly what we wanted to hear. The surgery went well, he did not loose much blood and he was very pleased with the result. Five minutes later we saw James roll by, coming from the operating room and wheeled in to his cardiac intensive care unit room (CICU). We are finally back in James' room, he is doing pretty well but requires constant watch. He will have a private nurse and ICU doctors will be right there with him for at least the next 24 hours. He is pretty swollen and his heart will be a little swollen for the next day, his chest is still open to have space for his swollen heart, therefore no pictures yet. He is also sedated and will have paralyzing medicine for a while. James has done so well and we are so thankful that he has been so strong, we truly have the best care possible for our boy and the surgeon has been fantastic. Keep fighting James!! We love you so much!! ~Mommy and Daddy

Scheduled for Surgery

So, I went to see James tonight and met with the attending physician. They have scheduled his surgery for Wednesday morning. They will roll him away at 7:30 am, this is a big one. We appreciate all thoughts and prayers. This is the Norwood surgery that I have mentioned in earlier posts and posted with pictures. This is probably the most serious surgery and is the most critical one. We are ready for the fight and James is our big fighter! They have been trying to bottle feed him tonight, but he only took a little so they decided to feed him through a tube in his nose straight down to the stomach so he will get energy and get strong for Wednesday.

Recovering from his first surgery

James has been doing good today and he has recovered well from his surgery. His blood pressure has been a little low so they have added volume to get it higher. He was taken off the medicine that was keeping him paralyzed and sedated. They hope to get the breathing tube out in 2-3 days and will start feeding him and the goal is to do it orally. All the doctors seem pleased and says that he is doing well. Now we just want him to rest, start eating and get stronger and ready for the Norwood procedure. He will have the Norwood procedure sometime between Monday and Thursday next week.

Click to see web site

 

What the Norwood procedure does is to connect the aorta with the pulmonary artery so all blood will be pumped in the aorta supplying blood to the body, secondly a Gore-Tex tube will be attached on the branch of the aorta down to the pulmonary artery to get blood back to the lungs. This way the right side pumps blood to both the body and the lungs. They will also cut all the tissue between the right and the left atrium out so it will be one big chamber.

Pulmonary Artery Banding

We came in at 6am to the hospital this morning to meet with the surgeon. The surgical team informed us that they had decided to put pulmonary artery bands in James chest. To do this they had to put him under and open up his chest. We met with the anesthesiologist and the surgeon and we received all important information about the procedure. At 11:45 am the anesthesiologist came in to get him for surgery. We were updated after 35 minutes that they were about to start the procedure. One hour later, at 1:22 pm, they were already done. We met with Dr. Forbess in the consultation room and he explained that everything went good and his blood flow was now spreading more evenly between his lungs and the rest of his body, all of his values went up and he will be more comfortable. He was rolled back into the ICU shortly after and we were able to see him for a short while when they rolled him down the hall. We will be able to go back and be with him in about an hour, they just have to get him situated in his room. He still looks the same and we feel so much better knowing we have one step down towards getting his heart better. He is one tough little guy! Thank you all for the support we are getting.

Children's Medical Center Dallas

Due Date

Wednesday January, 28th, 2015, we were back at Children´s Medical Center for new ultrasounds and meetings with the cardiologist. We met with two other cardiologists that were already involved in our child’s heart. After meeting with the cardiologists we met with Dr. Nugent a neonatologist that will perform the first procedure on James. We had a long talk with him and he explained how he would go in through a vessel in the groin to put in a heart catheter. He will open up the intact atrial septum so oxygenated blood will come through to the right side. Then they will put the pulmonary artery bands on to slow down the blood flow. They won´t be able to see how much damage the lungs have and how the heart is working until they have done the heart cath. When this procedure is done James will be in NICU and get rest and plenty of nutrition to get big and strong for the Noorwood surgery. Dr. Nugent was pretty straight forward and let us know that his lungs could be damaged and if they don’t get developed enough they will let us know what they can do and it might mean that he is not strong enough for the Surgery. This is a very serious case, but we must stay optimistic. The doctors at UT Southwestern and Children´s Medical Center had a meeting over lunch and they had discussed our case and came up with a date where they would all be available. February 24^th, 2015 looks like be the due date for James. We met with Dr. Santiago at UT Southwestern who is a high risk OBGYN. She will be delivering our baby. We discussed when and how James will be born. A C-section will easier for the team to get ready for, but regular induced childbirth will be better for my wife. Our baby will be just as safe either way, so we are almost positive that we will induce the childbirth on the 24th. We also had an ultrasound to see how James was doing. He is growing and everything looked great, his weight was estimated to be 5 lbs and 13 oz. According to the new plan James will be delivered at Parkland Hospital in the morning by Dr. Santiago. Doctor Nugent’s team will be in the next room to take over, prepare him for heart catheter and connect all necessary machines. Security will stand by, holding doors and elevators for us to get James to Children´s Medical Center as soon as possible. The goal is 20 minutes, so we will be in a rush. We finally have a date, my wife will be 39 weeks and 2 days pregnant. It is getting close, keep your fingers crossed and thank you for all the prayers.

The Decision

On Wednesday, December 31st, 2014 we went for an echocardiogram and consultation with Dr. Kavita Sharma, a cardiologist at Children’s Medical Center Dallas. We had our appointment at 8 in the morning and it lasted until 11:30. We ended up meeting with 5 people during our visit: the echo specialist, cardiologist, nurse practitioner safe-at-home planner, hospital coordinator, and social worker. We started with an hour long echocardiogram that was finished up by our cardiologist. They seemed very detailed during the echo. After that, we met with Dr. Sharma so that she could explain our baby’s situation and surgical plan. We were very impressed with all of the details she shared and she was very easy to talk to and understand. She was extremely knowledgeable about HLHS and the specific condition of our son. Dr. Sharma was comforting but at the same time, she let us know the seriousness of the situation. We soon realized that our baby’s situation was a lot more critical than we had been told. The decompression vein we thought was a huge plus for our baby will not make a huge difference once he is born. This only formed due to the amount of pressure in the heart and lungs. Because of the pressure build up, an intact atrial septum, and not having a left ventricle, the heart and lungs will be under a lot of stress when he is born. Also, this has caused the pulmonary veins to thicken and swell. In conclusion, we learned that his situation is a bit more complicated than just a normal diagnosis of HLHS. We realize now that we can’t rely just on success rates because our situation is very unique. It was really hard hearing all of these details, but we were grateful to hear the actuality of our son’s condition. Dr. Sharma also answered the question that had been on our minds since meeting with Dr. Mendeloff and Dr. Forbess…should we do the Norwood procedure right away or should we do the pulmonary artery bands with the Norwood procedure done a few days later? We feel very confident after hearing her detailed explanation of the bands that waiting to have the Norwood would give our son more strength to handle open heart surgery. Our scheduler also had us meet with the safe-at-home nurse. She would be the person that would train us on how to care for our baby once he leaves the hospital. They showed us the binder we will receive that contains 10 sections on how to care for him, information about his specific condition, and logs for feedings and weight gain, etc. A hospital social worker then came to talk to us about sibling support and help we can receive while he is in the Cardiac ICU. We were told his stay should be around 6-8 weeks based on his condition. My husband and I would like to mention how wonderful the office staff was at Children’s also. They helped entertain our 16 month old son, Lucas, while we met with everyone. They gave him toys, showed him the model trains, and even blew bubbles with him. He left there with a huge smile on his face and waved bye to all of the sweet ladies there! The whole fetal cardiology team was on top of every detail…we were so impressed that they had set up all of these meetings when we had just scheduled the appointment 2 days before! With all this being said, we’ve made our decision. Our son, James will be cared for at Children’s Medical Center Dallas. We have total faith in them! A huge weight has been lifted off our shoulders.

Medical City Children's Hospital (English)

On Friday December 12th, 2014 we met with Dr. Eric Mendeloff at Medical city children’s hospital in Dallas for yet another consultation. Medical city is the hospital we were initially referred to and where we met with the cardiologist. This hospital is a little smaller than Children’s medical center. We met with Dr. Mendeloff and he started describing the condition of our baby’s heart and how the surgery would be performed. He wanted to use a more aggressive approach to the surgery and perform the Norwood surgery 4-5 hours after our son is born. It would most likely be on a Monday and the whole team would be ready for the procedure. This is the more traditional way of doing it, as we have read on the internet. Since our son’s atrial septum is closed he wanted to go in and open that up as soon as possible and at the same time continue to perform the Norwood procedure. Dr. Mendeloff is a very experienced surgeon and have performed approximately 250 Norwood procedures under his career. He performs about 25 a year and has only lost one patient with similar problems as our son. He said that he had recently performed 2 successful surgeries similar to our son, with an intact atrial septum. We received a very good impression from Dr. Mendeloff and we liked the hospital. Now we will research our options and decide what surgeon to go with. Difficult decision ahead!