"Hello, ladies!"

Ben had his first clinic appt today. And the girls came with. Let me just say, that was a bit of insanity on my part, thinking that would be a good idea :). In my defense, I did not think it would take as long as it did. We did his labs first, at 6:30 in the morning. The girls were still asleep at Kohl's House for that. Joe brought them over after his labs were done. He did so awesome at first. Well, he did really awesome for the whole thing actually. He is a baby after all. But he didn't even cry for the first arm they tried. But then they couldn't get blood out of that arm and went for the second arm. He got pissed at that. Rightly so, if I do say so myself. Then at 7:30, the girls came over to the hospital, and we had breakfast. After breakfast we went to his 8 am appt. the girls were doing pretty well for that part. The nurse brought them coloring books, which they loved! Ben got weighed and measured. He is 25 inches now and 12 lbs 10 oz. the apn came in to talk to us and that's when the girls got antsy. If you've ever taken a sibling to your child's appt, imagine that chaos and double it. Or maybe you haven't had that chaos for your kids. In which case, tell me your secrets, since I may have to do is again. Lol! It was pretty chaotic trying to talk and them not wanting me to talk. Then they called us for his echo, which I thought would only be a half hour. Nope, it was an hour and he was starving about 20 min before it was over. Poor baby. I'll remember to feed him first next time. Which will be this Friday, thankfully. So the girls will be in school. They were full on ants in their pants by then. Abby more than Klara. Which is unusual.

Then we went back to the clinic to discuss everything with the apn and cardiologist, as well as discuss his labs. The apn felt the same as me. He doesn't need as many diuretics as he's on. He was on one once a day and another one twice a day. So, they cancelled the once a day one and lowered the other one to once a day. His magnesium and sodium were low, which could be due to the diuretics making him pee it all out. he had 3 diapers between 6 and 8. Then another one at 9 and one at 10. So,he was peeing a lot from the diuretic. Plus, he had lost a tad bit of weight. Which could be due to the diuretic. She also increased one of his anti rejection drugs. This is typical. Especially for babies. They grow so much that they constantly have to tweak meds to keep up with growth. His echo looked the same as his last one. So that's good. It's not getting worse. And, the cardiologist said that if he continues to look good, we may get to go home in another week and a half. He hopes to have us out of here around the 11th! Yay! I hope that is the way it happens!

We're at Kohl's House now! We've been here since last night. I'm am really excited to be able to have everyone in one place. But at the same time, I'm incredibly nervous not having doctors and nurses 2 feet away. We've already called the on call cardiologist 3 times today. Once because I forgot to give his antiviral meds at 12 and we wanted to know if we should still give them. Then, Joe decided to pre-draw everything so that wouldn't happen again and we discovered we didn't have enough methadone. So she called in 2 days worth which is all we needed. Then, I gave Ben his 6pm and 7 pm meds. About 10 minutes after his 7 pm meds, her threw up. A ton. So, I called to see if I should give all his meds again or just the 7pm ones. And now I'm worried because he's sleeping. This is nerve-wracking! I'm sure it will get easier as days go on. But right now I'm a ball of anxiety, hoping that I do everything right.

I haven't updated in a few days because, well, Ben is doing awesome and there's not much to tell. Until today. He is doing really well and has not had any of the arrhythmia's. So, I did my 24 hour care, where I was in charge of everything. His vitals, meds and feedings. Of course the nurses were still there watching everything. But, I was the one doing it all. Joe is doing that tonight. This is in preparation for us to go to Kohl's House tomorrow! :) as long as he still looks good and doesn't lose any more weight (he lost 2 oz overnight after consistently gaining. But they're ok with that as long as he doesn't continue to lose). I was exhausted today! They had him on an every 3 hour feeding schedule, which didn't match up with his vitals or meds. So I was waking him every 1-2 hours for something. So neither of us got any sleep. I talked to cardiology today and they said its fine for him to go back to a normal baby schedule of feeding on demand and sleeping when he wants to. Also, the only feed for 30 min max, restriction is off. He can eat as long as he wants to now. And boy did he today. So, tomorrow, I will again be doing all of his care at the hospital, and then we will hopefully be discharged after Joe gets here. Yay! I can't wait to be able to do everything as a family again. To not have to leave my baby in the room to go get food. To not have to divide my time between Ben and the girls. To be able to be with Joe and Ben at night. It will be so much nicer. And then, hopefully by the end of the month we can actually go home! That will be so awesome! I can't wait to be in my own bed and to to have to say goodbye to the girls every Tuesday as they stay with friends for their school days. I can finally resume bringing them to school. I can't wait for all of that!

Well, it happened again. Ben pulled out his ng tube for the second time. But, this time they left it out. They figured, he's nursing and taking bottles and does fine with his meds, so there's no reason for it anymore. So, now we're down to just his central line, the EKG monitor and pulse ox (which doesn't work half the time because he's so wiggly) and the pacer wires which are not connected to the pacer anymore. The nurse and his cardiologist said its looking like we will be at Kohl's House by Thursday. So, the nurse stepped up the trainings today. I did his vitals and gave him all of his morning meds and some of the afternoon ones. Joe did some of the afternoon ones and all of the evening ones. Joe also got trained on how to check his respiration and heartbeat using the stethoscope. We will both be working on taking his blood pressure the next few days. That's a more difficult one. We are also doing CPR training tomorrow. As is my sister since she helps out with the kids. We have another training on Monday to go over what to look for in cases of rejection or infection. They said that really the only thing holding us up now is us doing the training and the 24 hour boot camp. We can't do that with the girls here. That would be a disaster, cooping them up in his room for 24 hours. So we will do that Wednesday probably. His arrhythmia's are even getting less frequent and the cardiologist said that his echo looked better since they've had him on the high dose steroids. The lining isn't as thick anymore. I'm so excited to have our family back together soon!

Ben is getting better and better. I was able to nurse him 3 times today. For now, when he eats, we have to stop him after 30 minutes. There has been research showing that after 30 min, they start burning more calories than they take in. So far this hasn't been a problem. He gobbles down all his food. Usually in about 20 min. And his goal for each feed is 100 ml. That's a little over 3 oz. every 3 hours. But when I'm in his room I just nurse on demand. Joe said last night, Ben took 150 ml. So about 5 oz! Maybe he's going through a growth spurt, because he's eaten about every 2.5 hours today and has been extra sleepy. Of course right now it's been 4 hours since his last feed. We're going to have to wake him up. The hope for him is, get his meds in a good range this week so as to get rid of the arrhythmia. Then possibly be at Kohl's House by Thursday. Joe and I have to do all the meds training and vitals. Joe and my sister are taking a CPR course too. I am CPR certified so I don't need to take it. But I might join in just to have a refresher. Then, we will have a boot camp type day where we are still at the hospital, but we are in charge of all his vitals and meds, baths, and feedings. That way we get used to doing everything, but still have a nurse here just in case. We saw the list of meds last night. There's 12 meds he goes home on. We hopefully lose 1 in about month. Then another one at 3-6 months and 2 more between 6-9 months. It's pretty overwhelming to look at. But, this will just become our new normal.

Great news today! We moved to the 5th floor! Ben is still having some arrhythmia's. But since the 5th floor is a cardiac floor, they can handle that. They said as long as he's otherwise stable,(which he is) they would be fine with him on the 5th floor. The nurse told me, "if he was on the 5th floor and had these arrhythmia's up there, it's not something they'd send him to picu for." the only thing I was kind of sad about was, we never got to say goodbye to his favorite nurse M. We loved her! She said she will come visit him on 5 though. The other good thing is, he gets more visitors up there. He's allowed to have 2 parents and 2 other visitors. In picu he was allowed 3 visitors max. No matter who they were. Also, as soon as he is off isolation, hopefully tomorrow, the girls can come see him. So that will be nice for them to be able to be with all of us. And the play area is on 5 as well. Only like 200 feet away from his room. So, we can more easily go back and forth, especially since the girls can come too. He also took 2 and a half oz of breast milk in a bottle, 3 times today. He's doing great with his bottle feedings! Tomorrow, Joe and I have his meds training. One of the apn's and the transplant pharmacist are going to show us all his meds and the schedule for them, as well as any other things we need to know such as positioning. We obviously can't do tummy time for a while. And we need to hold him a certain way to burp him. And there's certain ways to pick him up. So we will go over all of that tomorrow. But, all in all it's been a really good day.

Well we've had a bit of another setback. Ben didn't go to the 5th floor today. He was having some irregular heart rhythms. So they did an echo and EKG. It showed some thickening in the left ventricle. This could mean many things. But, the number one thing they are treating for is acute rejection. Now, this doesn't mean he needs a new heart. The thickening was very minor and the irregular rhythms are gone now. But, they're giving steroids to treat it as if it is rejection. I do not remember them telling us this (I was a bit emotional at the time) but it is apparently common to have 2-3 rejection episodes in the first year. They treat with steroids and upping the anti-rejection drugs. His Prograf level was at 9 and they like it at 12. So they'll increase one of his anti rejection meds until it gets where it's supposed to be. They don't want it too high though. So, it's a delicate balance. The APN said she is not worried at all and she thinks we will be on 5 tomorrow. Let's hope so!

Otherwise, he's doing great! The speech therapist came by while I was with the girls. I saw her right before she left. She said he took 2 bottles. 1/2 ounce each! She also switched his pacifier so it was more like the bottle nipple. They put the rest of the feed down his tube. Then, the next feed they did breast milk! They're doing a challenge to make sure his Chylous is cleared up. If it is, I can try nursing again. All in all, not a horrible day. But I wish it was better. One funny thing. He pulled out his ng tube a few minutes ago. I had turned around to put his diaper on the scale, and just that quick, he had it out. He was laughing hysterically. He loved it. He was so proud of himself. Of course, he was super pissed when they put it back in. :)

Great news today! Ben will be going to the 5th floor tomorrow, as long as they have room up there. He needs a private room since he is post transplant and can't be with another kid who is actually sick. So they have to make sure there is space. He looks so good without his nasal cannula now. Practically the same as before except for that pesky ng tube. They also disconnected his pacer (but left the wires in) to see how he would do. He did amazingly well. I don't think his hr went below 100 at all today. His Iv is still in, but that will stay in until he is about to be discharged. The only thing going in his Iv is lipids now. And they're probably going to stop those soon. He started getting bolus feeds today. Meaning, they have him on a normal feeding schedule of every 2 hours instead of continuous feeds. It was so amazing to walk in there and see all the monitors gone except for 3. One for lipids, one for feeds and one in case they need to give something Iv. At one point I counted 14 different machines that would infuse him with 14 different things. And now he's down to 3. And none are continuous except the lipids. It's so amazing! Also, once he is on the 5th floor, as long as he doesn't need to wear the mask, we can bring him to the play area. So, we can all be together in there, instead of trading off who will be with him and who will go with the girls. I think everyone will be so much happier once we can be together as a family again

It looks like we might be on the 5th floor by Tuesday or Wednesday!! Ben got his nasal cannula out today. So he's breathing on his own. The only thing he's still getting by iv is his lipids and TPN. And TPN is getting turned off today. He gets one as needed meds by iv too. But nothing else continuous. Everything is being switched to oral. Well via ng tube for now. Eventually by mouth. He still has his pacer and one central line to deliver meds. He won't lose the line until he's about to go home. The pacer, we're not sure when he will lose that. He had to be paced a few times yesterday and today. He can't go home with that. I was talking to the nurse and she's going to ask when we can start breast milk feeds. His Chylous was so minor that they hadn't really wanted to do the monogen. But they did just to be safe since he was leaking small amounts of breast milk. So maybe well get off that formula sooner rather than later. And he will get a private room on 5, and as long as he doesn't need a face mask, we can walk around the unit with him. So exciting! I can't wait to get up there. One step closer to home!

Things are getting better. The chest tube is coming out today. He is off his last iv heart med. he may still need Bp meds taken orally. We will see. They switched him from a high flow nasal oxygen to a regular flow. They also upped his feeds of his special formula. He will get a chest x-ray every day to see if the Chylous is getting better. If it is, they can try breast milk again. Once he loses the pacer, he can probably go to the 5th floor and then once he's able to nurse, or take breastmilk in a bottle, he can go to kohl's house with us. Joe and I got to hold him yesterday, which was so wonderful! I'm so happy with all the progress he's making.

Ben was extubated today! We are so excited! We got to see his little face again. And we saw him laughing and smiling. Of course he got upset at some points too. Nothing a little Tylenol couldn't help though. He's on a high flow nasal cannula. Once he gets down to normal flow and loses some tubes, he can go to the 5th floor. Then hopefully soon after, Kohl's house and then home! He's still looking really good for being off the vent. That's our only news for today. But, it's exciting news! :)

Not a ton to report today. They took his vent setting down to 14 bpm and a pressure of 16. He's doing well on that. They also set his pacer at a lower level to see who is heart would do. They had it at 115, now it's at 100. His heart has consistently been at 120. 130 when upset. Which he was a few times today. Mostly when they changed his dressings. They took out 2 of the chest tubes and his central lines. He was not pleased with them removing the adhesives. :) but I'm sure he liked having less tubes. They also decreased his nicardipne. That is a blood pressure med. and they switched him from morphine and versed to methadone and Ativan. I laughed at my 2 mth old being on methadone which is a drug you hear being used for meth addicts. But, it is being used in this case to get him off of the versed and morphine in a safe way. They also did another echo and a chest X-ray. Everything looks great except he has a lot of air in his belly. Explains why he was so gassy today. Other than that, he's doing great. No major changes. Just slow decreases of everything some can safely get all the tubes out.

Ben continues to make improvements every day. His vent is at 16 bpm now, with a pressure of 18. This is the best I've seen yet. And he's tolerating it well. The APN was by and I asked about the chylous. She said his seems to be minor. The fluid was just slightly milky. So hopefully it will get better sooner. But he'll probably be on the special formula for a month. Which I guess is ok since we will be here at least a month. I just will have an over-abundance of breast milk in the freezer :) they finished one of his meds and might take out the central line tomorrow. The nurse started saving syringes for us to take home for meds. The kinds you get with liquid prescriptions. She said, most people find it easier to draw up all the meds and have them ready and give them as they're needed. Rather than draw it up every single time. It makes it easier to remember. Ben also had his first occupational therapy appt today. The ot was playing with rings with him. Sort of a tug of war. :) she will come 3 times a week. Physical therapy will come 2 times a week. They want to make sure his muscles are not tight and that he develops properly after being sedated for so long. I must admit, I'm a little scared about bringing him home. So many meds to remember. Plus, he will be immunosuppressed and has 2 preschool aged sisters. Germs everywhere! But at the same time, I can't wait to have him home. I miss cuddling with him and having a normal life.

We've had our first setback. :( We were warned this could happen. During surgery the surgeons nicked one of the lymph glands, I believe (it's almost 1 am and I just talked to the nurse. I'm a little fuzzy). This caused a chylous. This is when milk and fats and triglycerides pass into the thoracic duct. They found it when the fluid in his chest tube started looking milkier. so he now has to be on this special formula that has no fats in it. He will get his fats in the form of lipids through iv. He can not come home on that formula either, obviously. The nurse said its not a serious complication. Not life threatening. And they do see it often. Especially in babies since their little vessels are so tiny. It's hard to do surgery on something so small. But this does delay our going home time, which sucks. She said it could resolve in as little as a week. Or they've seen cases that take a couple of months to resolve. He's such a fighter, I'm hoping his will resolve in a week! I really want my baby home.

I love how every nurse, dr., APN, rt, etc., comes in all smiley and gushing over him and how well he is doing. I saw his surgeons in the hall and they told me, "he is doing fantastic! We are all so impressed with how well he's doing." except for all the tubes in him, he looks like I could just take him home. They lowered his vent setting to 18 bpm. And he's doing well with that too. They took him off his dopamine. They upped his feeds again and will keep upping them every 8 hours, as long as he tolerates it. The goal is to eventually get him eating every 3 hours like a 2 month old baby would do. Of course, more frequently if he needs it as well. His Bp is down where they like it. He's still a bit swollen, but it's getting better. All in all he is doing so great! The nurse said they'll probably start our parent education slowly so were not overwhelmed. We both have to take a CPR course ( I'm certified in adult/child/infant CPR and first aid, but it's good to have a refresher) and we'll need to learn all about his meds and how to give them. We also have to learn how to take his vitals. Bp, pulse, temp, etc. it's a lot to remember. We also have to learn the signs of rejection and infection. We can't leave until we know all of that stuff. It's a lot to have to know.

Ben is doing better and better every day! His Bp is still just a touch high. But that will probably resolve as he gets rid of more fluid. His hr is staying in a good range. Still 110-130. His eyes were so puffy when I walked in this morning, but even they had become a little less swollen by dinner time. His belly is so tight from all the fluid, but he's peeing a lot, so that should go down soon. They decreased his vent setting down to 26 bpm and took him off the nitric oxide. They also took him off of epinephrine and decreased the dopamine some more. They started breast milk feeds at 3 ml an hour. Very slow, so his belly gets used to it. He's in isolation until Thursday. Then after that the girls can see him again. Hopefully by then the vent will be gone too. He's tolerating all of the changes so well! If he continues this rate of progress he might get to go to the 5th floor in about 2 weeks. Then a week there. And then over to Kohl's House!

He is doing so awesome!! Hr is 120-130. He hasn't needed to be paced since early this morning. He has an internal pacer that goes off if his hr gets below 100. It will probably be taken out before he goes to the 5th floor. That won't be for another week or so though. They're weaning the vent too. He was at 36 bpm yesterday. He's at 34 today. And they'll start feeds in the next day or so. Which should go much easier with the new heart. He didn't tolerate it before because it put too much stress on his heart to coordinate beating and moving food through the stomach. Shouldn't be a problem this time. They're also weaning the dopamine. One of his heart drugs. Baby steps all around. He's getting there. He's slowly moving around too. They took the paralytic off around 8 am. So he's slowly coming out of it. The nurse just keeps telling me how awesome he is doing and what a little fighter he is. My little guy is going to do great things. I can feel it! Thank you all for the continued prayers and good thoughts!

We received the best news last night. At 11 pm, the cardiologist called me to tell me we had a heart! From then on it was a whirlwind of activity. Tests, chest X-rays, nurses and drs examining him. I was told he would have surgery sometime between 4 am and 12 pm. Then I was told 5 am. Then 5:30. 5:30 came and they said about another hour. Around 7, the surgeon came in and said between 15-30 minutes. At about 7:45, the anesthesiologist came in to get everything ready and take him away. I gave hm so many kisses and told him how much we all loved him, and away they went. At about 10, we got our first update that the heart was in his chest and they were waiting for it to start beating. That was the most critical part. The around 11:30 we got another update that the heart had started beating on its own and Benjamin was doing beautifully. The surgeon just came in to tell us everything is done. He is closed up, they didn't need to leave his chest open. They had said that about 70-80% of babies have an open chest for a few days. Just because of all the swelling. Their bodies are so little they don't have enough skin to cover the swelling. But, he was fine, not too much swelling. His hr is awesome and his Bp is great right now. He will probably be on the ventilator another couple of days. They're hoping to wean him off of it soon though. He will be paralyzed through the night to let his body rest. But overall he is doing awesome. The next 48 hours will be important to watch for rejection. But other than that he is doing awesome! Thank you for all the good wishes and prayers and love!

Today has been ok. It started off pretty worrisome. With his hr in the 200s. And a fever of 101.6. They gave Tylenol and a few tubes of fluid again. 45 min later his fever finally started coming down. But his hr was still high. So they gave some narcotics. That finally got it back down. And after that it stayed pretty consistently in the 160-170's. When the music therapist came, she played her guitar and softly sang him some songs. His hr was in the 150's then! And he conked out and went to sleep. Since then, his hr has been in the 150-170's. Generally around 160's though. Our nurse said everything else looks perfect. He even was fever free for most of the rest of the day. He just spiked a fever again at about 8:30. 101.3 again. So he's resting with some cool cloths on his head. I have changed 2 diapers today. I never thought I would WANT to change diapers, but I like doing the normal things I would be doing if he was at home. They are doing cultures every day to make sure the infection is starting to go away. If it is and he is still having fevers, it could be just that he is getting fevers related to the heart failure. Or related to the dehydration. They have a very fine balance of too much and too little fluid. It has to be just perfect or his numbers go all screwy. So, that's where we are today.

So, today we found out Ben has a staph infection. Which, just hearing that, it freaked me out at first. But, the nurse said its fine, they can treat it with antibiotics and it won't affect him getting his heart. She said she thinks he will show some improvement over the next day or 2. This morning he had a few issues. His Bp was pretty low. So they gave him a couple of tubes of fluid. He was pretty dehydrated. His fontenelle was sunken in. Also his potassium and calcium levels were off a bit. But they got those corrected by noon. Then, being the little fighter that he is, he rest of his day was pretty uneventful. His hr was in the 180's for most of the day (which they expect with an infection) until about 6 pm when it got down to the 160's and stayed there for a pretty long time. They took him off the paralytic today too, which was nice. It was nice seeing him be a baby again. So, when he would move around and try to play, his hr would go to the 170's. But since everything else looked good, they're not worrying about it too much and attributing it mostly to the infection and fever. So that part is good. I just keep hoping that one morning I will walk in and they'll tell me a heart is on the way.

So Ben is about the same today. Hr in the 180-190s. The nurse practitioner lowered the epinephrine a little in hopes of lowering his hr. it didn't do much though. But she said she's not that worried. The rest of his numbers all looked great! He's still paralyzed. They may take him off the paralytic tomorrow. We'll see. The fever is way down now. No higher than 100 today. Mostly 99.

I have to talk about Abby and Klara though. They are taking all this really well. But, I have to share today's antics. :) we were at Kohl's house waiting to go to the hospital. They told me to lay down and they would fix me. I was more than glad to oblige. I was tired. :) so Abby says, "ok, we're going to put tubes in you. Ok. Now you need a tube In your mouth to make you breathe." then Klara says, "now I'm putting is sticker on your head to watch your numbers. And now I'm putting jelly on your tummy and we will see pictures of your heart. Oh, your heart is broken! Now we have to put stickers on your tummy and watch the lines. Ok, time for your shots. You need medicine to fix your heart." then Abby adjusted my pillow and tried to move me. Clearly they seem to have some sort of understanding if what is going on with their brother. :) I wish they didn't need to know all of this. But it is good they seem ok with everything.

Tomorrow is going to start to get a bit harder. Joe goes back to work and that means more juggling of kids so that I can be with Ben as well as the girls. That may be a bit of a challenge. My mom and grandma will be helping out out, so that's good.

I saw another woman in one of the play areas at the hospital. Her daughter is there for something else. But she was telling me about her son, who died of heart failure. She said, he had many other things wrong with him too. So, he wasn't eligible for a transplant. Then she said something that stuck with me, "I know it is so hard to wait for your baby's heart to come. It must be so hard not to know. But at least he gets to be on the transplant list and gets a chance to get a heart." this is so true! I'm still wishing it will come soon. But, at least my baby is getting a chance by being on the list. She also said she would pray that he gets his heart soon. I must have millions of people praying for Ben's heart. I love that he is already so loved!

Does anyone reading this know the pope? Maybe the pope would be a better person to request that God provide us a heart. I mean we already had a blessing by the cardinal last week. Still no heart. I know I need to be patient. But it's really hard! They're putting a new arterial line in right now. They've been at it for an hour. And hour of poking and prodding my baby! His hr is now 195. AFTER morphine to help with the pain. This is the second dr in here trying to get the line in because his veins are so tiny. And they need this line. I hate this. I know that inside he is probably screaming. And we just can't hear it because he's conveniently paralyzed and sedated. Hopefully he's so sedated he's not having any pain. But the hr makes me think he is. we just need a new heart then this can be done with and we can go home. Just someone tell me how to help my baby. How much more do I need to pray?

I really hate all this uncertainty. Today we had found out Ben has a bacterial infection. Which like I said, at least they give antibiotics for it. His hr was hanging out in the 170s. Well I got here about an hour and a half ago. Joe had said his hr was in the 180s. When I got here it was 190s. Then he had so much mucus his O2 was down to 92 at one point. It's back up to 97 after a lot of suctioning out. But his hr is still 190. I just wish he'd get better and get his new heart soon! I was sitting there crying every time the O2 would dip or his hr would raise. They changed one of his lines too. From the right hand to the left. Apparently it's not reading well. So the dr went to get some stuff to adjust it. They said the hr could raise with his infection. But it's really high :( his temp is 100 again. Up from 99 earlier. This all just sucks! I want my baby home

So, today his temp is down to 99. Hr 170-179. So, better than yesterday, though still not at his best. He does have a bacterial infection. Which, if he's going to have an infection, at least it's one that can be treated with antibiotics and still get his heart. They don't know what the infection is yet. Just that he was gram positive. He's still paralyzed and heavily sedated. They're giving him Tylenol every 4 hours. Because even though he doesn't really have a fever, they want to stay on top of it. I heard so many ambulances last night, I really hoped his heart was on the way. Nothing yet though :( its so hard seeing him paralyzed and not doing his little baby things. But we want him to get better and rest will help that.