If I'm Completely Honest

I scheduled David's yearly check-up with the cardiologist the other day. It's on the 28th of this month and I can't wait to see how my little man's heart is doing. (For any new readers, David was born with only one ventricle. He was also born with Transposition of the Great Ateries and Situs Inversus.) You can read about his journey here, here, and here, and here. I very much look forward to these visits. I really wish he was going more often. But they also make me a little nervous, if I'm completely honest.

Okay, if I'm completely honest, I'll tell you that it's always at this time that I reflect on everything that he has been through in amazement at God's handiwork. The words "I am so thankful" are such a profound understatement.

If I'm completely honest, I'll tell you that I'm afraid of the what-ifs, and the unknowns. When we first found out about David's heart defect, I researched for hours a day trying to understand what was going on, what to expect when he came into this world, wishing I could just keep him in there where my body was keeping him safe and healthy. Then before each surgery I would spend time reading and researching what was to come, what to expect, to try and prepare myself.

I haven't let myself do any of that since after his last surgery. But today, I did and it brought back a flood of emotions. The truth is that the procedure that he had done is relatively new (the first being done in 1968) and they don't know for certain the long term prognosis. I've read that some speculate that a post-Fontan heart would last 30-40 years. I googled to try and find adults who have been through the Fontan and happened across a girl who is 32 and completed the Fontan 28 years ago. She says she is doing fine with just a few arrythmias. There doesn't appear to be a lot of information on the long-term prognosis. But I do know that the surgical procedures and subsequent care has improved over the years. And David has always fared waaayy on the better side of potential outcomes. He has amazed even his doctors in his recovery after all his surgeries. And he is doing absolutely fabulous right now. And we are so grateful for that!

With that said, I ran across some posts from other moms who also say that they are afraid. Wondering whether their child will make it to the teenage years, or whether they'll get married or hold their babies. I won't say that those thoughts constantly occupy my mind, I don't dwell on it. But I'd be lying if I said that I never shed tears thinking about it.

So I just pray. I know that David has a purpose here, and I pray that God lets me keep him until that purpose is fulfilled...whenever that may be.

We Are Home!

Updating on the blog didn't work very well, because for some reason, I couldn't use my phone to blog. So I tried to use facebook a little.
We are home now. David did amazingly well. We are so proud of him. He had a couple rough days fighting fluid in his lungs. But other than that the surgery went absolutely as planned. He checked in on Friday, had his surgery, stayed in the PICU until Wed. when he moved to a regular room and then went home on Thurs. He is such a trooper and a good little patient.
We couldn't have asked for better doctors, nurses and staff at Ochsner. They were all wonderful, as they have been every time we have gone. By the time we were leaving, David was saying that the nurses were the "bad people". We, of course, told him they weren't and that they were people who love him and want to help him. It is so evident that the PICU staff love what they do. And I am so thankful for that.
I know that we had so many people praying for us and for David. Thank you all so much for that. Thank you to those who came to the hospital with us during the surgery. That meant so much to us and we know that you didn't have to come spend hours out of your day to sit in a waiting room with us, but you did. And we love you for that. It's funny how such trying and stressful times can also make you feel tremendously blessed at the same time.

David's day started out really good yesterday. but around 9:30 his oxygen levels dropped to the 70s. He had a lot of fluid in his lungs. He was in too much pain to cough like he normally would so it just built up in there. An x-ray showed he also had a huge air pocket in his abdomen that was keeping his lungs from filling up all the way. They put him on a medication to loosen the stuff in his chest and put him on a good bit of oxygen. He was on breathing treatments pretty often.
By the time we left last night, they were trying to ween him off the oxygen slowly and he was starting to keep his oxygen level up where it should be. Hopefully he will be completely off by the time today is over.
Other than that little hiccup, he is doing really well. They told us that what happened yesterday has nothing to do with his heart or his heart functioning. It was strictly respiratory, which is not uncommon. He woke up a lot yesterday and was able to have a little juice and water. He is still on morphine for pain.
Throughout all this he still has his manners: I asked him if he wanted something yesterday and his response was "no 'tank' you". It was the cutest thing! He is also still saying yes ma'am and no ma'am. So Sweet!

Update on David

Thank you all for your prayers yesterday and in the days leading up to David's surgery. The surgery lasted right at 6 and a half hours. At 1:40 the nurse came out to tell us that he was all done and that everything went wonderfully. She said that there wasn't even the tinyiest bump along the way. We then got to go into the conference room to see the surgeon and he told us the same things and that they were trying to get him off the vent before he left the Operating Room(which is awesome for David's situation).
When we got to see him in the PICU he was, in fact, off the vent. He looked great. Doctors were coming in saying, in amazement, that he didn't even look like he had anything done to him. He is on morphine and another medication for pain. He didn't wake up much yesterday except, to mumble for his orange juice, bubbles, and his Daddy. We are hoping he gets to go to a regular room in the next couple of days.

David's Journey Part III

When David was about 8 months, they decided it was time to do the second surgery, called a Bi-directional Glenn operation. They would take the Superior Vena Cava-the vein that runs from the top of you body to your heart-and attach it to his pulmonary artery. This time we would have to go the Houston to Texas Children's Hospital since there was no surgeon to perform the surgery at Ochsner.

His surgery was scheduled for July 3, 2007. We checked into the hospital at 2:00 on July 2 for pre-op stuff and stayed at the hospital that night. His surgery was at 7:00 am the next morning. My family came to Houston to be with us. We also had church family who drove all the way to Houston for the 6-hour long surgery.

After a long, exhausting wait, the doctor finally came to tell us that David did wonderfully, and that we could go see him. He looked really good and stayed sedated most of the day. By the next day, he was eating and drinking and even smiling a little. He moved to a regular room on July 5, and then just 4 days after his surgery, he was ready to go home! We could not have planned for things to go any better than they did.

We stayed in Houston for another week until his follow-up appointment, which was also great. Then we were able to go home.

Now, today, we are preparing to leave to go to the hospital for his 3rd and final surgery. Today we do pre-op, tomorrow is the surgery. We just pray that everything will go as well as the first two operations did. This surgery will be at Ochsner, so we get to stay closer to home. But David is older and I think it is going to be harder for him and for us. He doesn't really understand what is going to happen, but we do tell him that the doctor is going to fix his heart. And he's ok with that.

David's Journey: Part II

We checked into the hospital on October 4, 2006 for a c-section. We knew that David would go straight to the ICU, but we still were unsure of what to expect. The doctors couldn't really tell us how he would do after he was born. We also knew that within the next few days, our brand new baby boy would be undergoing a major open-heart surgery. I really was terrified, I didn't want to admit it then, but I can now.

His delivery went well, aside from the fact that it was a section and that TOTALLY freaked me out. I heard him cry and saw him for a second then they took him to evaluate him and warm him. They brought him back in and Cecil got to hold him for a second. I got to give him a kiss,

and they took him to the PICU. I didn't get to see him again until the next day, because I couldn't get out of bed. Cecil would go back and forth between my room and the PICU and see how he was doing. All the nurses and doctors kept saying how wonderful he was doing, his stats looked great, he hardly ever cried. He had IV's and central lines and spent most of his time under a little hood to keep his oxygen levels from getting too high.

The next 7 days were pretty uneventful, we couldn't stay in the ICU so we stayed a couple night at a friend-of-a-friend's condo in New Orleans, and a few nights at the hotel at Ochsner, so we could be close.

I finally got to hold him on October 8! On my birthday!! The nurses had no idea it was my birthday but it was such a special present. She said I could hold him for about 10 minutes then we would have to put him back under the hood. Cecil had just taken the bags down to the car, we were going to run home to get some more things, and the camera was in the bag. But even without a picture, I will never forget it.

The day came too fast, but I knew it had to be done. When he was only 1 week old he went in for his first heart surgery, called a BT shunt. They say your heart is about as big as your fist and I looked at his 7-day old fist and imagined how tiny his heart must be. It was just amazing that his doctor would be operating on it.

A couple days later, one of the nurses, Stephanie, had told us what to expect when he comes out of surgery. She said that he will probably be swollen, possibly so much that we wouldn't recognize him. He would be sedated and probably on a respirator. She even brought us to see another patient who had had the same operation a week before. She was still sedated and on a respirator. So we were prepared to see David, well, sort of. I don't know if you are ever really prepared to see your baby like that.

Throughout the surgery, we had family and church family with us and we waited anxiously trying to keep our minds occupied. Then the finally called us back and told us that David did beautifully and we could go wait at the elevator to see them bring him up. We saw him for just a second and got to give him a kiss. Then they took him to get him all hooked up in the PICU, so we waited a little longer.

When we finally got to go in, they had changed his room and we walked right by that room because the baby that was in there was crying and squirming and had his arm raised up, we knew that couldn't be David. But it was. He wasn't on a respirator or anything. They said he did so well they were able to take him off the vent before he left the OR. We were so relieved and thankful.

Within 3 days we left the PICU and stayed about 4 more days in a regular room then David got to go home for the first time. He never had any complications and progressed and developed as it nothing was wrong with him.

At about 8 months we started preparing for his second surgery.

David's Journey

This summer, as most of you know, David will be going through his third open-heart surgery. His surgery is scheduled for July 10 at Ochsner. We will be using this blog to keep family and friends updated on David's status and recovery. But since we have made so many new friends since David's journey began, I wanted to give a little background on how we got to where we are today. And believe me, I know this path has been made a lot easier by so many prayers from people who love us.

When I was 5 months pregnant, Cecil and I went to see the Dr. hoping to find out whether we were having a boy or a girl. We both said it really didn't matter what our baby was, and said, like a lot of parents, "as long as he/she is healthy". As we sat anxiously in the ultrasound room with the tech, we watched her check all the anatomy and she told us that we would be having a little boy. We were both, of course, very happy. However, I felt like something else was going on. She kept going back to the heart and looking closely, as if she wasn't quite sure about something. She stopped and calmly said,"Ok, I am going to go get Dr. S and let him come take a look.

Ok...now I knew something was up and I told Cecil that something was wrong with the baby's heart. I had seen enough baby hearts on ultrasound to know that you see the little "cross" separating the four chambers. That wasn't there. Plus, Dr. S. doesn't come in to look at the ultrasound, normally.

So, he came in and scanned me and told us that he suspected that, in fact, there was something wrong with the heart. He immediately called Ochsner and got us an appointment with Dr. W., a pediatric cardiologist, that day.

We arrived at Ochsner and Dr. W. did a fetal echocardiogram. He was so patient and so nice. He was with us for well over an hour. He was able to tell us what was wrong with our baby and what would have to be done about it. It is just amazing the things they can see, even while the baby is in utero.

He told us that what our baby had was very serious and would require surgery. David was diagnosed with a single-ventricular heart, transposition of the great arteries and pulmonary atresia. This essentially means that he only had one pump, whereas everyone else has 2, the aorta and pulmonary artery are switched, and his pulmonary valve did not develop. We were also told that this(these) conditions would require three surgeries; that his heart could not be repaired, but that it can be fixed so that he could survive; and that I would not lose this baby while in utero, since I was essentially doing all the work for his little body, it would be after he was born that we would have to be concerned.

With that, we left and went home and tried our best to explain all this to our family, when we didn't fully understand it ourselves. We saw another Dr. in Baton Rouge who also diagnosed David with Situs Inversus (all of his organs are flip-flopped or a mirror image of where they should be). The next four months were a whirlwind, and yet it seemed like a very long four months. I spent many hours in the Dr.'s office being monitored and having non-stress tests. We saw specialists in New Orleans often throughout the pregnancy. David would be delivered at Ochsner by one of the high-risk specialists there. We made plans to deliver David on October 4, 2006, by C-section since he was breech. So we anxiously and very nervously awaited his arrival....