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.