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Thursday, March 26, 2009

Isaac is 1 Month Old!

Happy 1 Month Birthday, Isaac! I can't believe its been a month already! Its really flown by....I don't know if that's good or bad. Before anybody comments on this, yes...its my birthday too. Probably the worst one I've ever had. I hope it doesn't get worse than this. Don't get me wrong...I feel very blessed that Isaac is healthy at the moment, but I can't seem to think of a better gift than having my two boys at home with me...

So, back to Isaac....we've taken several pictures of him today, seeing as he is a month old, but we also took some special pictures yesterday. Thanks to First Memories (a non profit organization), I was able to make a srapbook card with his pictures and our pictures together. I know I could've done better but we asked them to take his pictures at 12:30 and so by the time they got to his bedside, I had about 15 minutes to create his card. Initially, we thought that they helped with taking just his first pictures but they are here every Wednesday and some Saturdays to take pictures for anybody that wants them and then the parent can srapbook the photos. We also didn't think that we should take his first pictures with tubes and wires, so we wanted to wait. Well, I didn't realize until yesterday that they take pictures with just regular digital cameras and like I said...they are volunteers, so they aren't any real photographers. That was fine with me...I didn't mind. So anyways, we took pictures yesterday, they printed 4 of them, gave all copies on a disc, and then I made this card.... --->

Wednesday, March 25, 2009

Isaac Updates

The cardiac cath doctor spoke to us yesterday and he said that there is no need to do a heart cath at this time. He had been on vacation this past week and when he came back Monday he said that the other doctors and residences shouldn't have gotten us so worried about this little hole. He explained that the hole closing is a very gradual process and he shouldn't need the procedure now because its not very necessary. He said that they don't really want to wait until it IS necessary but they will keep monitoring. They took him off of oxygen yesterday while we were talking (doctor said he was testing him) and for a few hours nothing changed. He started desating a little bit so they put his cannula back on but on room air. They took him off again last night and he is still off as we speak. If they feel that he needs it then they'll put him back on. Nothing yet though....he's very stable and breathing on his own just fine. So they'll keep a close eye on him todcay and possibly tomorrow, he can finally be moved to the 15th floor (if they have a room available of course). Nothing else is really new but of course we're happy that he may not need surgery or any procedure anytime soon (we're hoping). We're just gonna sit here patiently but anxiously (is that possible?) and wait for his new heart.
Midland EOG....thank you so much for Isaac's banner (although I have not seen it yet). It'll come in handy once they move him up to 15. I guess that's why Ernest hasn't brought it home yet...we can't really hang it up here in the NICU. The first time we were here, they had him in a private room and now he's in a common area that kind of remind us of a cubicle. So, once we move up, we'll hang it up in his new room.
I also wanted to post that even though we may not talk about him much on this blog, WE REALLY MISS ELI! He should really have his own blog! Just wanted to get that out in the open. Its aweful being here without him, although we know he is having a great time with his cousins. We're not even really sure of when he can come and stay with us again. It'll be difficult when we move up to 15...I don't know if they'd let him stay with us. Don't get us wrong we absolutely love Texas Children's Hospital (they are miracle workers), but I think their weakest points are that they don't accomodate for your other children. What would happen if we were absolutely by ourselves and didn't have anyone to watch him?. They could at least provide some kind of discounted child care couldn't they? I mean good gosh, they don't even give you a break on parking. We'd like to own a parking lot here! It'd make us millionaires in one day it seems. $12 a day!!!!!!! We're in the wrong business! So...yeah...sorry bout that. Stress reliever!!!
Here's some more pictures of Isaac in his different outfits. Wish the angles were better but its a little hard when his crib is so high up.

Saturday, March 21, 2009

Another Heart Cath

So...we thought we'd be moving to the 15th floor,but doctors have decided that they need to do another heart cath. This will be done to put a stent in a hole that Isaacs heart has that is getting smaller. I can,t remember what its called, but its a hole that his heart needs to keep his body's bloodflow steady. Doctors have not told us when but they said sometime next week. They had been trying to wean him off of the oxygen but haven,t been able to and that's when they noticed that the hole was getting smaller. They had warned us about this before but we're still so scared because its still a procedure where he has to go under anesthesia and get intubated and all that mess. It hurts our hearts to see him intubated..can't imagine how uncomfortable that must feel. So again, we'll let all know when this procedure will take place. Keep praying for his new heart tocome along. God Bless you all.

Thursday, March 19, 2009

Elated but also Heart Broken

Great news....as of later today....Isaac is back on the transplant list. He has taken at least 7 days of antibiotics, still has 3 more days to go, but nonetheless...he's back on active.
But why am I upset...Eli has left back to Midland with Grandma today..... :( I don't really know how long he'll be there but Ernest said that when he wants to come back, he can go and get him. But for now, Eli is happy. What kid wouldn't be happy not being cooped up at a hospital everyday all day!? But I miss him already! I think I took him for granted while he was still here. I should've played with him more! My mind and heart just felt and still feels so overwhelmed. We'll just have to take it day by day.
So, what's been happening with Isaac. Well, like I said until today, we've just been waiting for him to become active on the transplant list. Doctors have already said that he will be moving to a 15th floor private room. Its just a matter of when a room will become available. They say tomorrow!!! So, I've got to get home and pack my stuff so that we can stay up here with him. Occupational Therapists have started to introduce bottlefeeding two days ago (see pics below). OT said he was doing great that day but we still don't want to push him too fast. He took a little bit by mouth thaty day. We tried again yesterday but he took less. They had also increased his milk volume yesterday, so OT thinks that was the reason why he wasn't up to bottle feeding. He is being fed 64 ccs by NGT every three hours but they are feeding him within an hour and a half. So, OT also thinks that his tummy might be feeling full still and making him gag these last two days. They'll decrease the time of feed slowly and hopefully he'll start feeling hungry enough to bottle feed. We'll see....we just have to take it day by day and not rush him. Everybody is saying "he is the boss" so we'll leave it that way. I'm also adding a picture of the first outfit he was able to wear. It was the same day they started introducing the bottle. Thanks everyone and please keep praying that his new heart comes soon. Even though he's doing great, we never know what each day can bring. We're going to cherish each day we have with him.
I also want to take this time to get all of you to say a prayer for the Petska Family. Their son Braden had HLHS and had gone through his surgeries and was doing great until I found out today that he unexpectedly passed away two days ago. Lois, (grandma) thank you so much for your uplifting words after reading my blog (when I first found out of our son's diagnosis). We pray that you and your family have the strength to get through this difficult time. {{hugs}}.

Monday, March 16, 2009

Isaac Update-Sugar Fixed

So, after Isaac's feedings have gone up to almost 2 ounces, they were able to take him off the dextrose drip. They are still checking his sugar levels just to make sure, but they have said that he is doing fine. Now we have to worry about his feeding. He is still getting feedings by NGT and it seems that when he is moved around during his feeding, he'll spit up some of it. So, doctors are not really sure what to do about his feedings. Hopefully soon we can get him to bottle feed. That's what I'm worried about at the moment. More bad news is that they have found bacteria growing where his picc line is, and so now that line has to come out. Yesterday, his nurse put an IV on his foot, so that will be how he gets his antibiotics. His nurse today told me that there is also talk of moving him to the step down floor (15th floor). I think its great in a way especially because we can stay with him 24 hours but also scary because its a private room where nurses have more than two patients. If he gets moved, a parent has to stay with him 24 hours...and its understandable...I wouldn't leave him by himself for hours at a time. I'm not really sure how the system up there works. But anyways, we are still trying to find out when he can be put back on active on the list. And of course, we'll let you know when he will be. Please keep praying that his infection will go away soon and that as soon as he is back on active for his new heart to come along. God Bless you all!

Saturday, March 14, 2009

Isaac Update-Low Sugar

Houston, we have a problem...it turns out that Isaac might be hypoglycemic. We won't know for sure until they up his feeds and take him off of the dextrose drip, but I'm scared for them to even try to take him off the sugar. Last night, while we were in there with him, he started stirring and it looked like he had hiccups but it turned out that when we opened his blanket his whole left arm was twitching. Doctors and nurses came to check him and not even a minute before that started, they had checked his sugar level and it was pretty low. So they gave him some sugar water in his mouth and they upped his dextrose drip. Whithin about a minute, his arm stopped twitching and he was fine. They checked his sugar level again a few minutes later and it was back to normal. I'm thinking that this is exactly what happened a couple of days ago when his heart rate shot up. When the doctors made their rounds this morning, they told the nurse that when his feeds are increased, then they might take him off of the sugar. I'm scared to see what might happen. I think that because I'm borderline hypoglycemic and my family and Ernest's family has history of diabetes...I think he will be hypoglycemic. I think that because they are almost feeding him normal feedings. But you know what...if he is, I'm okay with that. Giving him sugar is an easy fix. We'll be talking to the transplant doctors very soon. Reason why is because we found out the infection is a common skin infection that he got from the iv line that he had on his thigh. They took that out earlier this week, but he still has the picc line on his left arm. They've taken cultures from that line also and it grew positive the first time and since today its negative. He'll be on antibiotics for a few more days. We want to find out from the transplant team about when he can be put back as active on the transplant list. We'll let you know when we find out. Please keep praying for a heart! God Bless you all!

Thursday, March 12, 2009

Isaac Update

Update from Below: Ok, so we still don't know for sure what caused the high heartrate, but the doctor says that he does have an "ugly bug." He's got an infection...but they don't know what kind yet so they don't know if they are treating it with the right antibiotics. Also, since its unfortunate that he's got some kind of infection, he is not active on the transplant list until it is treated. Please pray that he gets well soon and back on the active transplant list. Thanks everyone.

I know its been awhile. Well, I would've liked to say that he's doing wonderfully except something unexpected happened today. A couple of days ago, he started running a low grade fever but they thought nothing of it. For the past couple nights it got just a little worse, so they drew blood cultures. Ernest called this morning to check up on him before I was able to get there.....they told him he did come out positive for an infection so they started him on antibiotics. They've also gone up on his feeds (through a small tube in his nose), and they were about to move him down to the 4th floor NICU. So, I got there and they told me the same thing, but I noticed that when I was looking at him, he was shaking or shivering...I don't know. Then, he woke up all of a sudden and his heartrate shot up to above 200. It really scared all of us. While his HR was still up there, the doctor came to check him out. He said that sure it wasn't good for his HR to be so high, but there could be a number of reasons. It could be that he's got the infection, he could be in pain, his glucose was also low (although I think his HR would be down...don't know), but then it also might have something to do with the coronary issue. They drew more blood cultures to make sure there was nothing else going on, they did an EKG, an XRay and also drew blood for a cardiac enzyme test. They are still waiting on some of the results to come back at the moment. I'm more worried if its something to do with his heart. I'm hoping that its one of the other issues I mentioned above. I'm trying not to worry too much. Obviously the doctors aren't too worried because they are planning to still move him to NICU tomorrow.

So, since I haven't updated in awhile, here is where we stand. Tuesday afternoon, his breathing tube was taken out. Because his vocal cords had been irritated from the tube, we still couldn't hear him cry. They also took out the chest tubes (left there after surgery for any extra fluid drainage)... so more and more is coming off. Yesterday when i came up, they had taken out his pacer wires and his foley (pee catheter). All he had left on him, was the nasal cannula for the oxygen (which was and still is on low settings), the heart monitor wires of course, the cuff for blood pressure and the pic line on his arm. So, because there was nothing much on him yesterday, we were finally able to hold him! You can only imagine how excited we were! I might post the pictures of us holding him when I can get the pictures downloaded.

Today, its a roller coaster! I'm so scared of what the doctors might tell me. I wish his heart was here already. I don't know how much more OUR hearts can take. I don't know how parents can do this on a daily basis for many months. Its so heartwrenching to see your child so helpless. I'm still hoping that we did the right thing.

We also want to thank everyone for all their thoughts and prayers everyday. Please don't stop praying! His heart is out there somewhere!!!! We've also been asked what people can do for us everyday. We've talked about it and what we would really love is maybe some signs or banners to help decorate his drab room. Especially now,.. we need our spirits lifted. Again, thanks everyone and God Bless you all!

Saturday, March 7, 2009

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.

Friday, March 6, 2009

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!

Thursday, March 5, 2009

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!

Monday, March 2, 2009

Please Pray for Isaac

I just wanted to let you know that Isaac in in the process of a procedure called
a heart catheterization. Within the past few days, they have run many tests and
thought that it was in his best interest to have this procedure done before his
surgery. They have found an extra blood vessel connected to his coronary
artery. What they want to do is take better pictures to see where it is
connected and if they can fix it before his surgery. They want to plug that
vessel during the procedure, but before they do, they have to find out whether
doing so won't cause anything else to go wrong. They took him in at almost 3
and have said that they will update us every hour. We still haven't gotten any
word, but I know all is well. Please pray for Isaac. Pray that the procedure
goes well, that they find this vessel and can plug it without any other
problems. Thanks everyone and God Bless!

A Dedication to the Angel that gave me my new heart!

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