He's Opened His Eyes

Great News! We came in this morning to see how Isaac was doing.....and he had his eyes open! We were only able to see him at first for a few seconds because they were about to do an echocardiogram. We were so upset thinking that he wouldn't be awake by the time they finished. It took about 15-20 minutes for them to finally call us back up again. We went back up to see him and he was still at least alert. I'm so worried that he is still in pain though. I stayed there for a long time holding his hand, and singing to him. It broke my heart so bad to see his eyes tearing up knowing he can't cry with the tube in him. The doctors have said that they will probably try to extubate him tomorrow. That means they're hoping to take him off the breathing tube...and that means he'll be able to cry. Its so hard to see him like this but I haven't seen my kiddo awake since this past Monday. That means his heart must be doing really well. We've come back down to the waiting area to hopefully let him heal and rest. I really can't wait to see when they can take out all of these tubes and catheters, but I guess I really shouldn't rush....I'd like for them to keep a close eye on him still. So anyways, I wanted to let everyone know that they say he's doing great. I can't wait till they extubate him tomorrow. I can finally hear him cry again. Is it weird for me to say that! Please keep praying for his new heart to come along soon!!!!! God Bless you all!

At the moment, Eli is having another day out with Melody. She took him to go see Hotel for Dogs. I really hope that he has fun because he's been at the hospital more than any normal kid.

Surgery Day

Great news is...Isaac did great through the whole procedure! He went in at 8:00am and we have just spoken to one of the doctors about 10 minutes ago. He said that the stents went in just fine, they are comfortable with the way they placed the bands and now they are just taking final pictures and fixing to close him up. I want to thank everyone for their thoughts and prayers at the moment, but this is only the beginning of a long journey. We still have to pray that a his new heart comes along pretty quickly. I'm hoping and praying that we don't have to wait too long. Hope everyone is doing well and may God bless you all!

Isaac is on the List

Great news! We have just found out that Isaac is now on the heart transplant list! So that means, that between now and his surgery tomorrow, they could find a heart for him and he could get a transplant instead of going in to do this surgery. Yay! You never know...our chances might be good! Please pray! God bless you all and thank you so much for your prayers.

Isaac Update

So very sorry everyone for not keeping this updated like I should. Everything has been happening in the past few days so fast with no time (barely enough time to eat and sleep). Thank God for my mom being here to watch Eli through all of this. Melody is also here and as we speak she is at Chuck E Cheese's with Eli. I feel so sorry for the little bugger being cooped up at he hospital all of these days. This is really his first real day out. Hope he has fun.

So anyways, I know I was supposed to update on how the procedure went the other day, and because I couldn't get online, we tried to call as many people as we could. Well, so he did great during the procedure and came out fine, but bad news just kept coming from the results that they got from the tests. What they found was of course that he still has and underdeveloped left ventricle, but with an abnormally big coronary artery with many branches. After the procdure, the doctor's consulted with us and it was decided that the normal Norwood Procedure was no longer a good option because of the large artery and one of the valves that was completely closed off. So the cardiology team met before they met with us the next day and told us of a surgical procedure called a Hybrid Norwood. Not many have been done in this hospital but only because the Norwood has really worked for them and also because Isaac is their first case with Hypoplastic Left Heart and this abnormal coronary. From what they have told us, this Hybrid procedure is less invasive than the regular Norwood and also will be less risky for Isaac. It will be done by a team of catherterization doctors and of course cardiac surgeons. They do not have to stop his heart and put him on bypass, so that makes me feel a little better. This procedure will be a bridge to get his little heart working a little better because now he will need a full-fledged heart transplant. We were heartbroken listening to the doctors telling this to us, especially since the newborn hearts are a little harder to come by, but....we have faith! We know Isaac is strong enough to get through this surgery and we know that God will give our little angel a new heart. I know there's reason for us coming to Houston and everything just falling into place at the right moments. And we know that even a transplant is not a complete fix, but we will do everything in our power with God's help to keep Isaac healthy. Like the doctor's have told us and we understand is that we are basically just trading in a whole set a problems for another whole set of problems. The reason why they say this is because we have to always watch for organ rejection, lifelong medication, and many many doctor's visits and procedures to make sure his new heart is still working for him. The very best news that we've heard is that because he is still so young and his immune system is still building up, he has an even better chance that his body will take this new heart better than if he were older. Right now, they are thinking that his first surgery will be tomorrow. I know its coming close and we are all super scared but "the sooner the better." They are keeping him pretty stable at the moment, but I really hate to see him like this. He's got so many wires coming from his skin that there's no skin to touch on him. Since the heart cath was done, they have been keeping him sedated off and on. He came out of the heart cath with a breathing tube through his nose. The next day, the plan was to take it out because they had told us that he was doing most of the breathing on his own. So they tried this for about half of the day yesterday, he was doing fairly well (not great), so they put him on a little bit of oxygen. He had a few apnea episodes where he stopped breathing for a few seconds and made his heartrate drop, but he recover it on his own. Well, last night, mom and I were up there with him, the doctor came by to check on him and as he did, Isaac had an apnea episode. Immediately, he said "he's not breathing", and flicked Isaac's little foot. As he did before, he recovered on his own, but they told me the breathing tube would have to be put back in. I broke down....I was almost sure he could do this himself. I hat that he has to use it. With the tube going down through his vocal cords, he can't cry and a tube down your throat will make you uncomforable, so they have to sedate him most of the time. Myself, I hate sedation, but the nurses have told me that its for his own good. It'll keep him from getting his heart and lungs worked up again. He needs to save his energy for his upcoming surgery. The other thing I hate is that since the heart cath, they really haven't let him wake up. I want to see those beautiful eyes again. He needs to know his mommy doesn't he? But I understand....he does need his rest. He'll be able to open those gorgeous eyes soon enough. With all the doctor and social worker consults, we try to stay with him as much as possible. We touch him, talk to him, hold his hand, and rub his head. I know our touch is important to him right now, and we'll keep doing it until they tell us otherwise.
For now, please keep Isaac in your prayers. He really needs this new heart and prayers for a new heart is especially what he needs. God Bless you all!

First Trip to Meet the Doctors

Hi Everyone,
I know its been awhile. We just got back last night from Houston. We're all glad to be back home. I better suck in all the West Texas air that I can get. Looks like we'll be in Houston a little more than I expected. We got there Monday because my first appointment would be the next day at one (Tuesday). We woke a little early figuring that maybe we would beat the traffic, but to our surprise, we left at 11:30 and got there at noon. An hour early! I was actually surprised that we got there that fast. But anyways, we met with the Pediatric Cardiologist that would be taking care of us and she did another echo cardiogram. What was really funny was that this doctor knew the doctor that had done my first one in Odessa. She trained her and as a matter of fact, the next day I learned that she taught and trained most of them around this area and surrounding states. I know we're in good hands. After the echo, we sat down with her and she again confirmed the diagnosis. She did paint a clearer picture of what would happen during all the surgeries though, but same as you would find online. The only other difference was that all babies born with this are different. It turns out that straight hlhs is where the left side did not develop at all, and Isaac seems to have a partial development of the left side. Still not enough to ever work correctly, so she told us in any case they all get treated the same. She also let us know that nothing had changed, which is good and bad. It's bad of course because its still a defect and good because no other complications developed and Isaac is still a candidate for the surgeries...at least the first one. We spent a good long 2 hours or more with the cardiologist getting our questions answered. Despite her not giving us too much hope but telling us how it is, we still think we're in good hands. She answered all of our questions. During that time, Bryan was nice enough to watch Eli for us. I think Eli had fun...not sure about Bryan yet. They played video games, read books, and I don't know what else. THANKS BRYAN! So anyways, after speaking with the cardiologist we met with the nurse that will hopefully be taking care of all appointments and other questions we might have. That took another hour or so. Needless to say, we didn't get to eat lunch until 4:30 that afternoon. I'll never start off an appointment without eating. I'm glad Eli had his pop tart for Breakfast! The nurse told us that we'd probably have to come back a little later this month to meet with my OB unless she could pull some strings and have someone see me the next day. We begged her to try and get me there the next day. We went back to Bryan's apartment and the nurse called us about 8:00pm telling us to be there at 11:00 to meet with my OB. We tried going to the zoo after we ate, but they were closed by the time we got there. Eli was upset!
The next day was a little more productive. They did a sonogram to confirm that everything else with Isaac was okay. Thankfully, it is...he is growing otherwise very normally. It seems like the sonogram took longer than the echo did. Eli got to see a little of his brother. We met with the high risk doctor and he didn't meet with me very long. The nurse said that it was good he didn't because "we don't want to impress him." If we did, then there's a problem. He told us that with this kind of lesion in the heart, there wasn't too much to worry about in the obstetric view. I should be normal and them not worry too much about preterm labor. After finishing the sonogram, which we are upset about....realized we didn't receive any pictures, we met with my OB. Great doctor. He talked to us for a long time, even about nothing at all. I'm just glad that we liked him.

Finally, after that appointment, we were able to eat. Well, Eli was so stuck on going to the Zoo, he was driving us nuts with his whining. So, we thought to go ahead and go and eat there before they closed on us again. He had a lot of fun, although we were all upset because by the time we were able to get to the monkey exhibits, there were no monkeys there. Even though, my feet hurt and I felt extremely tired, I think I was a good sport....I didn't complain but I was feeling awful. We left after closing and of course I fell asleep in the car.
We got to the apartment and I rested a little longer and then we went to eat dinner. After eating dinner, we went to Bryan's parent's house. He had told us before that they never had to worry about leaving for a fireworks show on New Years or 4th of July. I was a little skeptical, but he was right. Midnight rolled around, and all the sky was lit up with fireworks. It was so pretty. People in that area must have spent thousands of dollars on fireworks. Glad it wasn't me!! So, we left back to the apartment about 1, fell asleep, woke up at about 9 and left back to Midland. Like I said, I'm glad to be home...for the moment. We're still waiting for my nurse to call and let me know when my next appointment in Houston will be. That'll be the day we temporarily move too. Moving....that's another story for a later day. This blog is a little too long.

Isaac Update

Hi everyone,
After much contemplating and research, we have decided to have me deliver and have Isaac's surgeries in Houston at the Texas Children's Hospital. One main reason for asking my doctor to refer us to Houston was because I read that this center is the third best in the nation in the Pediatric Heart Center falling right under Boston and Philadelphia. If we can have one of the best centers take care of my son, and best of all, still in Texas.... count us in! We'll be there!
I want to take a few lines here to thank Bryan for letting us stay at his place for at least the month before I deliver. Eli's so excited, because he loves Bryan. I know a three year old may not understand that his brother is "sick" and that the doctors need to take care of him, but he sure did understand that we would be living with Bryan for awhile. After telling him we were going to Houston, he seemed kinda iffy until we mention about staying with Bryan. He giggled, and said, "Oh, Bryan... OK!"
So I just wanted to keep everyone updated on where the surgery would take place. We'll give more updates after our next appointment with Dr Blanco in Odessa. Take care everyone...and thanks for taking the time to read our little rantings.