We love our Grandmas

It is so exciting that we are finally getting to move freely with our Garet. Both grandmas have had a chance to hold Garet now. It is like getting to hold him for the first time all over again.

The picture above is of Garet and Grandma Rose. The picture below is Garet and his Granny.

We still have a lot of people that are excited about holding Garet again for the first time.

Ok now to the updates. We have been getting so excited about all the holding going on that I have to make sure I update everyone of how Garet is progressing. His left lung is now back to normal and they have stopped doing the morning x-rays and EKG's. They are continuing to give him his meds by mouth and he is now off of all the IV's. He can be wireless now if we want to every once in a while. The only thing that he is hooked up to is the heart monitor and the Oxygen sensor on his foot. We just continue to wait and see what he decides to do on his own. It is looking good that we may be able to go home some time soon. We have not heard a date for going home yet. Everything they show us and tell us they are saying when you get home do it this way. When you get home do it that way. So that makes us think that it may be coming soon.

Even less wires

We are a champion burper now. Garet has been eating about 4 ounces at most of his feedings. Since he is eating so much at one time now we really have to make sure that we burp him well or everything he eats comes back up at the end of the feeding. Below shows grandma Rose burping the big man. He is doing a really good job of holding his head up on his own. He just needs some help sitting up. He is getting so big so fast. Garet has decided that he does not like to have his blanket on him very much anymore so we have started to put some little clothes on him so he only has to have his blanket on his legs. We took some of his onsies and cut the bottom snap part off so that it is just a long shirt. We had a little white hospital one on him but it was so short that it really just covered his chest and his belly hung out the bottom.

The doctors are saying that his lung seems to be getting better. The last couple of x-rays that they have done show that he has some good air flow threw both lungs. His heart on the other hand is still not doing so well. The pumping function is still in the non measurable area, but they are saying that it is in the higher part of the unmeasurable. It is confusing. To me it sounds like it is some what measurable. We want his pumping to be up around 70. Anything under 30 is considered unmeasurable. When we cam in is was consistently below 20. Now the past couple have started to show a little improvement and it sounds like he is staying in the low 20's right now. Once he gets up in the 30's then they will consider that improvement. But the doctors say that we should not go by the numbers alone. The fact that he is eating and is pink and is staying awake a lot is much better to look at than any number a machine can pop out for us. Right now we just need him to keep eating and growing. The doctors say that as long as he keeps growing then we will continue to look up. He is measuring 22 1/2 inches long and weights right close to 9.5 pounds. Since he is eating so well and seems to be gaining weight our status on the transplant list has moved down. That is good because it means that he is not in the critical stage of we need a heart right now. Everything right now is looking good. He is now down to only 2 IV drips. The only part of him that has things hanging off is his left foot. His arms and right leg are free to move as they please.

I know that most of you know who we are. But there are a lot of people that we are hearing from all over the place that we have never met. Above it our most recent family picture. We want to make sure that everyone knows how much we really appreciate all the prayers that have been coming our way. It has really helped with Garets health and with keeping our attitude positive. Everyone that has helped us in any other way we thank you so much as well. There are to many of you to name but thank you to everyone. We hope to have more good news to come. Our hope is that we get to take Garet home some time soon and continue to get him better from the house.

Good morning to all

I was not able to post yesterday. I am sure you all know that. I made a trip home to get clothes for work. I also was able to get some stuff done around the house that really needed to be done. So I have some catching up to do today. Below is a picture of Garet and Daddy. They had so much fun sitting there playing with each other. It really feels like he is starting to get better since we can hold him. Yesterday while I was in town and daddy was working Grandma Rose got to hold and rock Garet during the day. Now that he knows he can get out of bed he can really throw a fit trying to get us to get him out of bed. I don't blame him though. Being in bed all day long is no fun. We try to take him out as much as we can but not get him to stirred up.

Yesterday when I got back to the hospital Garet had a nice clean face. They had taken out the feeding tube. Since it has been a few days now since we started to bottle feed him they thought it would be safe to take if out. They also had him on room air instead of Oxygen. So he does not have to have anything breathing assistance at all right now. He has been off the Oxygen for about 18 hours now. We are very hopeful that he will not have to go back on the Oxygen. Below is a picture of his clean face and his little body with a lot less wires and tubes everywhere. They now have him on three medicines that he is taking by mouth. Instead of the 13+ IV's that he was on at the beginning, he is now only on 3 IV meds. They are hoping to have him down to only 2 here in the next couple days.

He is now only hooked to very few machine and most of them are just for monitoring things not for assistance. He is now down to being hooked up to the heart monitor, two different IV lines one in his right arm and one in his left leg, the blood pressure cuff (They take this off every once in a while to give him a break),thermometer line that is on the bottom of his right foot, and a Oxygen sensor that is on his right foot. Below is one of the first pictures that we took after they got him all hooked up to everything. I know most of you have seen this but I just wanted to show you how much better he is looking now. All the prayers that everyone has been sending are really doing so much for him.

We have a new favorite toy. We are not able to have any flowers or plant in the PICU so Grandma bought a balloon. He loved to look at it and laughed when it would move. I thought I would see if he would hold it and for sure he would. He is learning when he moves his arm the balloon moves. He will sit there and play with his balloon for as long as his little hand will hold it. He has not learned how to put the string in his mouth so he is good to play as long as he wants to right now.

Lots of things today

We met a new nurse today, her name is Paula and she is so nice. You will notice in the picture below that a few things are missing. First of all they took the big sticker thing on our head off. Yeah we can see our entire Garet face. Also on his left arm he had a big IV line it almost looked like a little cast on his arm. With that on he could not use his left arm since they had to have it restrained to the bed. Well they took that off this morning as well. So now both of our arms are free. That makes Garet very happy but that means that anything that is on his body has to be taped down because he knows that if he pulls on it they will come off. That is why he has the big pieces of tape on his face. He has learned how to pull the little air thing on his nose and get it out.

The next exciting thing is that I got to hold Garet and feed him a bottle. We have been able to feed him now for the past day or so, but this is the first time since we were admitted to the PICU at Wolfsens that I have been able to hold our little man. He is off enough IV's and off enough of the other machines that we were able to unhook him and pick him up and move to a chair for about an hour. It was so nice. I have been trying to put the cutest pictures on here to show you all how happy he can be. Today he had a big feeding and needed to burp, but he did not think it was such a good idea. So below is one of his mad pouty faces. He was telling me threw his eyes that he did not like what we were doing. So right now we just wait some more and see how Garets heart and body do while they continue to take him off more of the different medicines. We also have to see how he does taking the medicine by mouth. Whey we took him out of bed to hold him the weighed him. He is 9.5 pounds. He has only lost one half of a pound since he has been in here. So now we are working on getting the weight back on him. He really loves to eat so I don't think we will have any trouble doing that. Thank you all for the prayers that you have been sending our way, it seems that they are all helping a lot. We are still not out of the woods yet but it is nice to see him getting a little better. His heart is still having a hard time but they are working on helping that with medicine. We are still praying that we do not have to have a heart transplant, but that is still a very real possibility. Only time will tell what will happen next.

We love our food

We have now been able to eat out of the bottle for the past 4 or 5 feeding. We are eating about 2 ounces every 2 to 3 hours. We would probable eat more if they would let us but our tummy has to get used to having that much food in it at one time.
Today we signed the papers to get him put on the transplant list. This does not mean that we will have to have one but the longer you are on the list the better our chances of getting a good match. They have also told us that if he does need a new heart they will try to maintain his little heart as long as they can with medicine to try to get him as old as we can before doing the transplant. The older he is the easier it will be to find him a heart. The bigger and stronger he is means that he can take a bigger heart if one come up. Right now with his size he could take up to about a 1 year old heart. So if we can maintain him with medicine for a couple more months then he will be able to take a even bigger heart if he needs to. This morning they started to give Garet a couple of his medicines by mouth instead of my IV's. Since he is keeping food down and not having to struggle to much to do so. The next step is to get as much of the medicine by mouth the better. They start to do this so if there is a chance that we can go home while waiting for a new heart if we need one then we can. We have also had some nice big full diapers which is good as well. I know you all wanted to know about the poo.

Daddy had to go back to work today since the rain has let up. It is hard to not have him here with us all day. We know it is hard on him as well having to be at work while we are here. I have to go back to work in a week or so. I know I will have a hard time as well going back to work but some of our normal life has to go on while we are going threw this. We are very lucky to have Grandma Rose here in town so Mommy and Daddy can go back to work and there is still someone here to sit with Garet. We have had a wonderful family support threw all of this. Ganny Babs is making sure that we are all fed well to keep our energy. Everyone has been so great is helping in any way they can. Thank you so much to everyone.

The doctors say that the left lung still looks a little flat but there is some air moving threw it and there is no fluid on the lung so we just have to keep his left side up as much as we can. Garets heart is still not pumping very well but they are able to get it under some control with medicine. It is still not any were close to what it needs to be but we will take that right now. He will have to be on this medicine for a long time. That is one of the medicines they are starting to give by mouth. If they can get him to start taking his medicine threw his mouth and we can get rid of all of the IV's then we will able to hold him. He may also be able to sit in his swing and bouncy seat. Well it has been a good couple of days. We really hope and pray that we continue to have these good days and then number of bad or scary days keeps going down.

We just want to be outside

It has not been bad being inside since it has been raining for the past week. Now today it is so nice outside. It is so hard to sit inside the hospital and just look out the window. We just want to pick up our little Garet and load up the stroller and go out for a walk. We can tell that it is hard for Garet as well. He loves to be outside and now all he can do is just lay in hi s bed.

Well not much has changed in the past couple of days. We are thankful that he seems to be doing ok. They have been working on the collages lung a little bit more. It must be getting a little bit better since they are not putting him back on the ventilator. He has been full of smiles when he is awake. I think if he was not all hooked up that he might have rolled over on his own already. There are times that he gets mad and almost rolls over with everything hooked up to him. I can not wait till we can start to work with him on sitting up and crawling and then even walking.

I hope everyone is having a good Memorial day. Eat a hamburger for us. Granny was so nice and brought in food for us and the entire nursing staff that had to work today. So we did get to have a hamburger and some ribs. It was a great Memorial day dinner. We just had to close out eyes and pretend that we were outside at the pool. But don't you worry we will be out at the pool before you know it. Garet has his swimming trunk in his diaper bag here with us. Grandma Rose bought them for him, so we are all ready to do some swimming. We will invite you all to come swimming with us when we get out of here. You all be ready.

Our little fits

The past day or so it has been a battle to see what kind of breathing assistance is best for our little Garet. They took him off the ventilator on Friday and put him on just oxygen threw a little nose piece. Then they found out that his left lung has partially collapsed so they put him on a CAP or CPAP or something like that. He did not mind that to much. Then they decided that the CPAP machine they had him was not strong enough for how much he weighed so they put him on a bigger machine. Doing that they had to change the thing that went over his nose. They had to switch it to a piece that went in his nose to help get the air into his lungs better. Well he did not like that one at all. Mostly he did not like that one because he could not see anything with it on. He had two big plastic tubes on both sides of his head and big rubber things up his nose. So any time he was awake he would throw one of his fits. Well that would cause his blood pressure to go up and his heart rate to stay elevated. So they only left him on that over night trying to get his lung to puff back up. Now they have put him back on just the oxygen with the small nose piece. He is much happier with that on and it is keeping his heart rate a little lower. His lung is still not as good as they would like to see it but they are more worried about the heart rate and making the heart work to hard. They come in about every 2 hours and thump on the left side of his body with a plastic little mallet. It sounds really bad but does not hurt him. It is used to try to break up any fluid in the lung and try to get it out. Having the big nose thing in over night must have helped with the collapsed lung or they would not have put him back on the little oxygen.

I hope you were all able to follow all of that. Basically on Friday they took him off the ventilator and put the little nose piece in. The for the next couple days they made him mad and now his back on the little nose piece. I guess that would have been the easiest way to tell you. If his oxygen levels stay up and his lung gets a little bit better than tomorrow we should be able to start bottle feeding him again. Right now they are feeding him formula threw an IV. So at least his tummy gets to feel full.

We hope everyone is having a good holiday weekend. It is amazing how a college town gets very slow on a holiday weekend. We went to get breakfast and there was no one on the road. It was nice. Normally when we take the elevator down to the lobby we have to stop at about every level to let people on. This morning we made it clear from the 10th floor to the lobby with no stops.

Thank you so everyone who has came to visit and called to see how everything is going. We are hanging in there and trying to stay positive.

We were so excited to be off the ventilator. We had a lot of smiles for everyone that came in the room. We did pretty good over night. I was able to feed Garet a couple time last night. They just had him on some pedialite to see how his tummy would do. He was doing about the same as when we were at home. He would eat about an ounce and then fall asleep. That is just showing that his little heart muscle is still having to work so hard to do anything extra. So this morning around 4 they came in to do there normal daily chest ex ray and they found that his left lung was partially collapsed. This is partially from the way he was laying and partially from the size of his heart pushing on this lungs. So when they found this out they made the decision to put him a CAP. This is what he has on in the picture below. It is just a piece that goes over his nose and blows constant air into his nose to try to help keep air in his lungs and keep it from collapsing completely. Garet does not like it at all. He was loving having the tube out of his throat and now he has this tube right in front of his face instead. But we will do whatever we need to to keep him breathing on his own. The plan for today is to try to get him back off the CAP and just with the little nose thing. They are not changing any of his heart medicine today. They are going to try to take care of this lung issue before they try to aggravate him any more.

Matt went to Vystar yesterday to set up the donation account. We have had family and friends ask us how they can donate to help out with hospital bills. So we Finlay got this done. We have two different way you can donate. You can call 1-904-777-6000 or go into a vystar. All you have to tell them is that you want to deposit to the Garet Howard donation account. We also have the donation button on the right side of this page that you can click on and do a donation that way. Please do not feel you have to do any of this. We are just setting it up for the people that are asking. The thought and prayers are all we really need. When we are all finished with this fun new part of our lives, if there is any additional money still left in either of these accounts we will be giving it as a donation to some sort of heart foundation. We want to make sure that anyone else that has to go threw this can get the wonderful help that we have been receiving.

Garets fan club

We know that Garet has a lot of family and friends out there that are pulling for him but I thought I would show you some of his hospital friends. These are three of his friends that sit at the bottom of his bead and keep him company all day long. Some times they sing to him and sometimes they just sit and make sure the nurses and doctors are doing there job. We know the doctors and nurses are doing a great job but these friends just keep them on there toes.

Garet does have one toy that he loves so much. Our new friend Trish one of Garets nurses found this toy for him. It plays music and has flashing lights. He love to watch the lights flash and I think the music really helps to calm him down.
They were able to take the breathing tube out this morning and he seems to be holding stable. His chest is still moving more than it is suppose to but that is just because of the size of his heart. Garet seems to be a little more comfortable with out the tube down his throat. They do have everything ready if they have to put it back but as of right now we are doing ok with out the tube. We sounds so pitiful when he tries to cry. His throat is very sore and rough so not much sound comes out when he tries to cry but you can see it on his face.
They are giving him methadone every 12 hours to help with the withdraws from the narcotics that they have had him on for the past week. It only takes a few days for there little bodies to get addicted to the narcotics. They will slowly be decreasing the amount of methadone that he gets until he is not getting it any more. We are still not out of the woods yet, depending on if his heart starts to mend itself or not will depend on if we have to get on the transplant list. Right now all we can do is pray and leave it up to God to do what he feels is best for our little man. I know I say it at the end of each of my post but thank you so much for all the thoughts and prayers please keep them coming.

Take a deep Breath

Good morning

This morning we are working on taking him off the breathing tube. Over the night they have slowly decreases to drip of sedation medicine so that he is as awake as they can have him. They just came in and turned the ventilator down as low as it can go to see how he breathes of his own with the tube. So I am not sure how many more steps there are to taking the tube out but it sounds like we are on our way to getting that tube out. They are still saying that his heart is about the same. If there is any change it is not measurable at this time.

I just got done talking with the nurse and asking he why they are trying to take the tube out. She said that if they take the tube out and his heart gets worse then we will have to go to put it back in and go to transplant. If they take him off and he stays the same again most likely transplant. If they take him off and he gets better then it could be something he just keeps getting better. Most of the Doctors including the head transplant doctor have looked at everything and seem to think that we will most likely be heading to transplant. He is not on the list yet but taking the breathing tube out and seeing how his heart reacts is going to help them get him on the list if that is what we have to do.

Thank you for your thoughts and prays, it could be a tough day today and we need all the support we can.

Hurry up and wait

The doctor just came in to talk to us about the Catheter test that they just did. It was kind of a good news bad news kind of thing. They were unable to find any abnormalities in the heart that they can go in and fix. So we are pretty much at the same place a we were before. We now have to wait and see what his little body wants to do. We are now playing an even longer waiting game. We have to wait and see if his heart starts to get better over time or if he gets worse than we start to strongly look at the transplant option. So I guess we got some answers in one way but now we have to wait again. The genetic tests should be back in a couple weeks and maybe that will shed some more light on the subject. Other than those tests it is completely up to God to give us the answers.

Last night was a rough night. He decided that he did not want to go to sleep. At about 12:00 he decided that he was going to throw one of his fits. Finally by about 2 in the morning we were able to lay down and get a little bit of sleep.

Tomorrow is sounds like they may try to remove his breathing tube and see how we do without that. Since he has been so awake the past couple of days they seem to think that he will be less agitated if they take out the breathing tube. I am really not sure what to think about that. He has been doing a lot of his breathing on his own with just a little bit of assistance from the ventilator. Since we put him on it voluntarily to give his heart a break I am sure he will be good when they take him off but it is just a little scary. Now we are not for sure that this will happen tomorrow but that is what we are hearing.

Well I wish I had more to tell after the test today, but that is all that I have for right now. I will talk to you all again in the morning.

Tomorrow is almost here

Today has been a pretty good day. We had a couple time that Garet got a little mad at us. When I was getting ready to leave to take a shower this morning he decided that he was going to throw one of his little fits. I thought it would be to get his heart rate up to the 180's. That is the highest it has been in a quite a few days. It did not take to long for him to settle down. When he has a little fit like that he gets very tiered after he is done and goes to sleep shortly there after.

We had the two doctors in today that are going to do the Cardio Catheter tomorrow. They had us sign release papers and also went over everything they were going to be doing. It is good to hear that we will get a some sort of answer but it can be very scary when they talk about the risks that are involved with this test. There are just so many things that can go wrong with any procedure. It is hard to have the trust that we have to have in these doctors. Our little mans life is in there and Gods hands.

We are number two on the list for the procedure tomorrow. So they will most likely be up to our room some time between 8 and 11 to take him down and get him ready. They have told us to expect his to be down there for around 3 to 4 hours. The procedure only takes about 30 minutes but the time it takes to get him down to the correct floor and get him prepped and get Anastasia going takes a while. Then when they are all done they have to make sure that he comes our the Anastasia good before sending him back to his room and also make sure he is good and stable before moving him again. So I hope by about dinner time at the latest we should hear something. As soon as I do and have a chance to absorb it all I will get on and update you all.

I look forward to hopefully bring you all good news tomorrow or at least some sort of answers. Thank you to everyone that is following our little man and keeping him in your thought and prayers. We love you all.

Yeah for poo poo

Good morning to all

We have been waiting the past night and day for Garet to give us a little bit of poo. They told us that as soon as he does that they can start to give a little bit more food type IV's. Well last night right as I was getting ready to go to bed we found poo. I don't think I have ever seen so many people so excited about a little ones poo. The nurse was excited that he did it on her shift and the dr on last night even came buy to say that she was happy we got poo. They thought about starting him on the food stuff last night but decided to not change anything in the middle of the night. They are going to start it some time this morning. I am sure this well make him grow even faster than he already is.

As for his heart they are not seeing any change as of right now. That is a good thing that it is not getting worse and they said right now if it was to get a little bit better they might not see that right away since it is so bad. Sorry I can not update on his heart more than that. Until we have the catheter test on Thursday I don't think they are going to be able to tell us anything that they have not already told us.

It is still raining here and it looks like it will be for the rest of the week. That is a good thing right now so Matt does not have to work. It is also good because we do not have the time right now at home to water the plants that Matt had just planted. God is really helping us out in many ways. He really is an awesome God. He is not only watching over us he is taking care of our plants. Matt went home last night to give our dogs another night inside. With all the rain they are a little messy, ok a lot messy. All three of the dogs like to play out in the rain. Most of our yard were they like to play is dirt or mud in the rain. At least they are having fun as well.

One more day of waiting and hopefully we will have some good answers to pass on to everyone. Thank you again and again for all your thoughts and prayers. We really have a great group of people that are supporting us and all the prayers are felt and are very appreciated. We love you all and hope to be able to see you all soon.

Ready for night time.

Today was a nice calm day. We are hoping that tonight will stay the same. He has slept a lot of today and that is good for his heart. The nurses are telling us that they are doing basically the same thing each day now just to keep him stable. We are for sure on the books for the Cardio Catheter test on Thursday. Once they are done with that test they should be able to come to our room right after and tell us what they have found.

The above picture is one that Garets Great Grandma took the other day while she was here visiting. He was wide awake looking around at everything. He really likes to be awake but the doctors and nurses do not like it quite so much. Matt is going to bring a cd player tomorrow and some of his cds that people have bought for him. He is also going to bring a bunch on his books that we were reading at the house. He really likes it when we read to him. Maybe that will help him to keep him calm and happy when he is awake. That way they will not have to use so much of the sedation medication.
Some of the nurses here seem to think that Garet needs a little girl friend. There is a cute little girl on the other side of our floor that is also a heart patent and I think they said that she is 5 weeks old. They cam in last night and said that they would be to cute together. I am not sure about a girl friend at this age but it should would be nice to keep in contact and have them be good friends and be able to relate to one another as they grow up. As we stay here longer and longer and get to know some of the other parents in here you do start to feel like they are an extended family. The nurses also become a very important part of your life and you look forward to seeing them. You hope that they are going to be the ones taking care of you little one

We do miss all of our family and friends and can not wait till we are back home and able to come and visit with everyone.

Its morning again

It is a pretty nasty day here today in Gainsville. It is rainy and kind of gray outside. But we are still staying stable inside and trying to stay posative. Today they are not trying much of anything we. They are going to slowly take Garet off of the medacine that is helping him pee and see if his little body will contiue to pee without the assistance of that medacine. They are also going to start to give him a little more food. Right now they just have him on some of the basic nutirents that he needs and also still the protien.

We are still on the schedule now for the Cardio Cathetor on Thursday and we have hoping that that will be first thing in the morning. This procedure is what we are going to be looking to for answers. Right now it is the only thing that any of the doctors think will give us a little bit more information on what our corrective action will be.

A lot of the poeple from the transplant end of things have been in and out talking with us. They have been doing a great job in letting us know what may happen and making sure we have all the paper work in order so we can move fast if we have to the way of transplant. It also looks like they are planning for us to be here for quite a while. We kind of already knew that but now they are talking to us about more long term living arangments here in Gainsville. I guess after we are here for a while the Ronald McDonald house will have to leave for a couple days and you have to get back on the list to get back in there. So our social worker is looking at other option we may have. I guess they have a coupld apartments here in town and we can apply for grants that will assist in the payment for that and in those cases we can stay there form up to 6 months if needed.

There is just so much paperwork that we are having to do. For both medical and other. I feel like I should get a stamp made with my signature on it for all the stuff that needs to be signed. I am just joking of course but it would be nice. Well we have more doctors coming in so I will be back later.

Plans have changed for tomorrow

Well we were suppose to be going in to the Cardio Cath first thing in the morning and then they changed it so they were going to go an MRI instead and then they came back in and said that they changed there mind back to wanting to do the cardio cath but then they had lost there place in line so now we have to wait to do it till Thursday instead of having it done tomorrow. I with they would have made up there mind before the canceled the first apt. Now instead of having a chance to get answers tomorrow we have to wait till Thursday, and that is if they don't change that again. I know they are trying to do what is best and the reason the thought the MRI would be better is it is less invasive procedure. But I guess they can find out more with the Cardio Cath so I really do not know what to think right now.

They do feel that he is staying stable enough that they are going to try to feed him threw his IV more than just the nutrients and potassium that they have been giving him. In order for them to be able to do that he has to do a little poo poo for us. So we are waiting for him to do that.

Today we met with the lady that does all the paper work in order to get us on the transplant list if we have to go that wrought. We are still hoping that is does not come to that but they want to be on the ball in case we do. There are so many blood tests and paper work that has to be done before they can even start to consider putting him on a transplant list.

He is for sure getting his days and nights mixed up. It is now almost 11 pm and he is so awake and looking around. We will have to work on that before we leave the hospital. I will stay up all night long if I have to just to have him home with us.

Matt had to go home tonight so that he could get up early to go to work tomorow. It is hard to think that we still have to do our normal day stuff with all of this going on. I still have 2 weeks left before I have to go to work. I am going to be able to work out of the office that is only about 5 or 6 miles away from the hospital in case I have to run over here. I feel very greatful that I have the option to be able to do that. Well I will chat some more tomorow but for now it is bed time.

More and more tests

May 18th, 2009 @ 5:50pm

Today we thought was going to be a quiet day, but we have had quite a few different people in and out all day long. First thing this morning they came in and did his daily chest x-rays. Then just a little bit ago they came in and did a E K G and then they did an Eco or ultra sounds of his heart. We thought we were going to be going in and doing a cardio catheter tomorrow were they insert a catheter and go into the heard to check it out that way. But now they have decided that the are going to do a chest MRI first thing in the morning. It does sound like we should start to get some sort of answers here in the next couple days. They still may not be able to tell us why this happened but they will be able to start telling us what we are going to have to do to fix it. That is the most important thing to us right now.

Here is a picture of most of his Iv's they have running to him. Now keep in mind they are not all running at the same time. I feel like when we are all done here we will be able to be a nurse if needed. You learn so much in such a sort time.

They did give him a little sponge bath today and replaced a lot of the wires and things like that running to him. He loves his baths so he was happy when they took some of the wires off of him and he could move around a little bit more that he had been able to. Even though we have only been here about a week he is starting to look so much bigger. I know when they are first born they grow quickly but when you can not hold them they seem to grow even faster. Well he is taking a little nap right now so I am going to try to catch a little map myself. Thank you to everyone that has been sending there prayers our way they really seem to be working.

Smooth night

May 18th, 2009 @ 1:32 pm

We got a call yesterday about 4pm from the Ronald McDonald house letting us know that they had a room ready for us. It is a nice place that we can call home as long as we are here. Matt and I tried to sleep over there lasts night but I had a hard time getting to sleep, so we ended up back in Garets room for the night. I just don't think I am ready yet to sleep away from him. It is nice to have a place to go and take a shower that is only for you.

So last night went pretty smooth. There was a little while where his Blood Pressure was a little low but they got that under control. The x-ray people came in again at about 3 am but they were a lot quieter this morning than they were the other morning.

We have had great nurses so far and really appreciate everything they are doing for our little man and for us. Today they are not changing much of what they are going to do. We are just going to keep him on the same meds that he has been on and keep him calm and stable. It is so important right now that we not make his heart work any harder than it already has to. It is so hard when he starts to squirm around because we know that he just wants to go outside and see the sun light. They tend to keep his room on the dark side so he does not wake up as much. I have a feeling once we get home he will have his days and nights mixed up. He seems to be more awake at night time than during the day. Well I guess now I am just rambling so I will say good bye for right now, but I am sure I will be back to give more updates soon.

Our new room

May 17th 2009 @ 11:46am

So last night at about 6:30 pm we got moved to a different room. The room that we have been moved to has the capability of a process called ECMO. This process is a machine that can support the heart if it decides to go into full failure. The ECMO machine pumps the blood out of the body and puts oxygen into the blood and then pumps it back into the body. They are not saying that we will have to do this but there are only 2 rooms on the entire floor that have the capability for that machine, so I guess we are in the right room if that has to happen.

He seems to be staying some what stable with all the meds that they have him on and last night he was so awake it was nice to see him look at us. He does get very mad when he sees people talking to him and they can not pick him up. So we have to be careful when he is awake how much we talk to him. I don't blame him for getting mad. I know I want to pick him up every time I see him. I think that is the hardest thing, not being able to hold him and make him feel better. Well that is my thought for this morning. I am sure that I will have more updates as the day oes on.

Our sick little guy

May 17th 2009

I know a lot of family and friends out there are wanting an easy way to keep up with what is going on with our little man. I am going to try to my best to update out blog page as often as I can to keep you all up to date with what is going on. For anyone that has not heard already we have a very sick little guy on our hands right now. We have found out that the left side of his heart is very enlarged or dilated. It is also not pumping out the amount of blood it should be. A normal heart should pump out about 70% of the blood that is pumped into it with each beat and his is only pumping out about 10% if we are lucky. So we are in the middle of a bunch of test some of which take a week to get back and some that will take 4 weeks or so to get back. So our new home for a while is going to be at the hospital. The doctors have told us that we may never find out what has caused this but right now we are just worried about making sure he stays stable and finding out what we have to do to fix him. The doctors have done a great job with letting us know every option that could happen, from letting the hears respond to medicine all the way to getting thing ready in case a heart transplant is the way that we have to go. I should have access to the Internet while we are at the hospital and will try my best to keep you all up to date with what is going on. We love you all so much and thank you for your thoughts and payers. Please keep them coming.

Below is a picture from before we found out he was sick just in case you have not seen how cute he is.