Surgery is done!

Surgery day is done and over and Anthony pretty much sailed through it. It is open heart surgery so there is quite a recovery time, but the big one is behind us now. We got to the hospital at 7am this morning. They were getting ready to take him down to surgery. We got to stay with him in the pre-op area for a little bit and he was all smiles. I gave him LOTS and LOTS of kisses and special kisses for grandparents and aunts and he smiled after every one! I told him to do well and that he is such a strong little boy!

It was a while before we got any updates, but they did keep us informed as things went on. I think he finished up surgery around 11:30 or 12. The surgery was pretty uneventful and everything went as planned. His surgeon, Dr. Hirsch repaired the hole between his ventricles with a patch. His own tissue will eventually grow over this patch as he gets older. He also had a small hole in between the atriums of his heart that she sutured shut. She had to open up the leaflets in one of the valves of his heart as well.

We were able to see Anthony about 2pm. It was heart. He is on a breathing machine and was very sedated. He has LOTS of tubes. His trach, g-tube, a chest tube, catheter, arterial line, IV, central line. I think that is all. It was hard to see him like that but we know that it will get better. He was already starting to be weaned off the ventilator. He might only be on it for a day or two. He is also involved in a research study where his blood sugars will be closely monitored and adjusted. The thinking of this is if he has great glucose control, it will lead to better healing and a less risk for infection. I think this will be good for him. We will be back in the morning to see how he is doing. We have amazing family and my sister took Sophia for the night and Tony's parents will have her after that. This way we can focus on Anthony and getting him better. We have the greatest family ever!

I am so in love with U of M. The nurses are great and actually fill me in on what is going on with his care. It is so crazy the difference with the PICU here and at DeVos. We are invited to attend rounds as well. We probably won't go tomorrow morning because we want to sleep in a bit, but it's nice to know that we have the option. The communication here is great and I feel involved with the plan of care. I couldn't ask for more!

Getting Ready for the BIG One...

So, this is a big week for the LaFata family. Anthony arrived to Ann Arbor via ambulance yesterday afternoon. I was able to ride with him and Tony came down later with Sophia after she got her 4 month shots. The ride down seemed to go pretty quick. When Anthony arrived there was a lot of people in to see him. His nurse, doctors, social worker. It didn't take me very long to realize how much better the care is here at U of M. Tony seems to think it's not as great because DeVos is a for profit organization. Whatever it is, there is a major difference.

I felt so out of the loop of things at DeVos. Just because I wasn't able to be at Anthony's bedside 24/7 doesn't mean I didn't care about him, but that's almost the way that I felt. Last week Thursday Anthony had been transferred back to the PICU because he was having some respiratory distress which had started Wednesday night when my mom was visiting with him. I had put a new outfit on him Thursday morning that was washed in a different detergent and soon after he broke out in a rash. The nurse in the PICU blamed me for all of his issues and said that it was all related to the detergent, breathing issues and all. Well, obviously not because he was having breathing difficulty 14 hours before he had the outfit on. Come to find out from the cardiologist that they thought the rash was from a medication, but nobody thought it was important enough to share that with me and the fact that he had an infection in his trach. It's so frustrating. If we do end up going back there, I feel the only way to get all the information will be to read his chart because nobody tells me anything. It's beyond frustrating. The staff up in the ICU expected us to do this "rooming in" with Anthony, but it was impossible to fit it in with our schedules. They never supplied us with enough of what we needed to do trach care and we were never educated on g-tube care, yet we were supposed to do this, um yeah? Anyway, I will stop rambling, but I do think I will need to file a complaint. Yeah DeVos might have a nice building but that doesn't mean jack if the care sucks!

So, more on tomorrow. Anthony's surgery is scheduled for 7:30am. I am not sure how long it is expected to take, but I can imagine it being relatively long. It will be a hard day, but we have lots of family coming down to support us. He will go to the PICU after his surgery and will probably be there at least a couple days. He is currently getting some blood to perk him up for tomorrow. He got a new IV today for the blood, but will get a central line in surgery which will be great for him!

I just want to thank everybody for there support. It has been hard, but it would be much harder without all of you. Thanks for all of the cards, we do appreciate them! Also, I want to thank my co-workers for their generosity! A bunch of them pitched in and got us $200 in Meijer gift cards. That is perfect because we can use them for gas, formula, groceries, diapers, whatever! Thank you guys! Also, I received 25 cards in the mail yesterday from an online group of moms that I belong to. I was so touched!

I will post updates tomorrow as I can. Thanks again...we love being at U of M even though it is far away!

Add another surgery to the list...

Anthony is hanging in there like the tough little boy that he is! Things have been difficult but he is being a trooper. The doctors have decided to keep him in the hospital until his open heart surgery at the U of M since he is still having spells. However, they are saying today he might be able to move down to the general peds floor which would be nice.

So, Anthony was not doing well at all with his eating. He had a tube in place for feedings (NJ tube from his nose to the beginning of his small intestine). This kind of tube is only short term and can be pulled out relatively easily, which Anthony did and they had to put it back down. The speech therapists have worked a lot with him to try and get him to eat, but the second he would get a drop of formula in his mouth he would start gaging like crazy. So, the doctors decided that he would benefit from getting a g-tube (gastrostomy) for feedings as well as a surgical procedure called an open nissen fundoplication. The purpose of this surgery is to prevent Anthony from spitting or throwing up. They don't want him to because he is at high risk for aspiration with his trach (throwing up and having it go down the wrong tube). So they wrapped his stomach around his esophagus to make it so he can't throw up. He has a decent size incision from this. He had his surgery on Tuesday 4/19.

Poor buddy was pretty uncomfortable after surgery. Yesterday his belly was really hard and distended, it had me a little worried. He also was really swollen from all of the IV fluids that he had received in surgery. He was getting intermittent (bolus) feedings through his tube, but wasn't tolerating them. The feeding would just sit in his stomach. So they stopped those and now he is just a feeding pump with a continuous rate going very slow and they will bump it up very slowly. He did poop last night and had a good poop for me this morning and his belly is softer and he is not as swollen which is great!

The neurologist was in to see him this morning. They just want to make sure he is cleared from all of his specialty doctors for his open heart surgery. They are going to do another MRI in a week or so to make sure everything looks good for him. He will have to be transported to U of M via ambulance with either a respiratory therapist or nurse. I am happy we don't have to take him because I am not sure how he would do in such a long car ride. We don't have a date for the surgery yet, but hoping soon we will know so we can get everything planned out.

We have had so much support from family and friends and we really do appreciate all of you and your thoughtfulness. I have some really amazing co-workers who have been bringing us meals which is great. After spending all day at the hospital with both babies, the last thing I feel like doing is cooking! And eating out and cafeteria food is getting really old. We will keep you updated, but keep thinking of us and praying that this will be the worst of it for our little boy...he really is my hero.

Brother & Sister

 Sweet smiley boy! 

 So cute!

 The perfect onesie!

 After surgery...so sleepy!

 New g-tube and incision from sugery

 Sweet Sophia sucking her thumb!

Brave little boy...

It has been an interesting week. Of course Anthony is still in the hospital and I feel that he won't be coming home anytime soon. It is so frustrating...I feel that he is missing out on so much and so is Sophia because she always comes with me to the hospital all day to visit with her brother.

Anthony is still not taking anything by mouth. We have been trying like crazy multiple times a day and there's no progress. He acts like he wants the bottle but as soon as he gets some formula in his mouth he starts gaging like crazy and coughing. The speech therapist brought him a special bottle that will help control the rate of the drip, but that didn't really work either. He sucks on his pacifier like a champ, so it is so disappointing that he isn't taking anything by mouth. So, he still has the feeding tube giving him formula into his intestines. I think the doctor's are giving him this week and if he can't eat, he might need a tube place on his belly for feedings.

Airway Oxygen came by today to drop off his apnea monitor and portable suction for the trach. I also got a lesson on how to use them. It doesn't see too difficult.

I felt that today was an overall crappier day. Anthony is having lots of spit out of his mouth which is so unusual for him. I don't know if that is happening just because he is having trouble swallowing or what. Also, he is having more secretions from his trach and was needing a lot more suctioning today as well.

He also ended up having 2 more of his blue spells today. With the first one, PT was working with him and trying to do some tummy time. He didn't like it and it made him go into a spell. He stopped breathing, dropped his sats and his heart rate went into the 50s. He had to be bagged and came out of it after 45 seconds. Then when we changed his trach today he did it again. After these episodes he gets ghostly pale (even his lips completely lose their color). It takes quite a while for his color to come back. The doctors don't think it's a "tet" spell (related to his heart defect) or seizures. They say if a baby gets mad enough sometimes they hold their breath and cause these episodes. I would be okay with that if Anthony didn't have his heart problem, but he isn't like other babies and his heart needs to be watched very closely. It's so frustrating! Part of me thinks we should just go to U of M and see what they can do for him.

The hospital is telling us that we need to do a rooming in period where Tony and I care for Anthony completely on our own for 12 hours straight at different times. The more I think about this the more upset it makes me. First of all, there really isn't any time where Tony can do this because he works. He could do it on a Saturday but then I have to stay up all day with Sophia. Then if I do it during the week, I will have to take Sophia with me and Tony wouldn't be allowed to come pick her up after work. It says in the guidelines that we are allowed a 30 minute lunch and 30 minute dinner, gee thanks. We have to call the nurse to give meds and do all of his care for the day (even change his bed, seriously? I don't change his sheets everyday at home). I feel like I am being babysat. I'm sorry, but I know how to take care of my baby. We have gone through all of the trach teaching and have been taught how to use the equipment. I have been at the hospital everyday taking care of Anthony, but apparently that isn't good enough. Plus, there will never be a 12 hour period where either one of us will be alone with Anthony by ourselves, so why is it necessary to have to do that at the hospital.

So, this is the latest for the week. The roller coaster ride continues...hoping it will soon stop or at least slow down!

Still Unanswered Questions...

Anthony has been doing pretty well the last couple of days. I have been up to the hospital to visit with him and he seems pretty happy and he has been smiling a lot which makes me really happy. Tony and I and his mom are all learning how to care for the trach, it's nothing too scary to me since I am familiar with them  in the adult population. Tony is catching on pretty good too.

So, at the hospital today, the respiratory therapist came in to give Anthony a breathing treatment. Then she asked the lady teaching us the trach care if she had heard what happened to him when they changed out his trach yesterday (the first one since having it placed last Wednesday). Apparently he had a spell where he turned pretty white and pretty much passed out and his heart rate dropped...that would have been nice to know. Thanks guys for keeping me in the loop, it's seriously annoying to me sometimes the lack of information they give to me. Then tonight his nurse called and said that he had an episode where he turned blue, got stiff and his heart rate got into the 30s (which is EXTREMELY low, usually it is 110-140). They had to bag him (use a resuscitation bag) and he eventually came out of it. This sounds like his "tet" spells that he was having before. I was very disappointed to hear about them because I thought the trach would have fixed things. So who knows, maybe he will end up having his heart surgery sooner than later. I am planning on going up to the hospital early tomorrow morning in hopes of catching some of the doctors that will be rounding on him.

The other issue that we have is his feeding. Ever since Anthony was born, he has been an amazing eater! Now he is struggling with it. He has an NJ feeding tube to give him nourishment and he is working with speech therapy to try to be able to eat orally. The nurse tried to feed him this morning and he took the bottle, but then got really upset and started coughing and ended throwing it all up. Then I tried to feed him this afternoon and he just didn't want anything to do with it. I am hoping that he doesn't end up with a feeding tube and that he will soon figure out how to take his milk orally! So, I think we are still a ways away from going home unfortunately :(

Anthony with all of his balloons

Sophia & Anthony

 Sweet Baby Boy

 Sophia being so happy!

Feeding troubles...

Anthony is doing pretty well overall today. I came by to visit him after work this morning for a couple of hours. I had really missed him and it was good to see him again. Then I went home to sleep and came back for the evening. Anthony started having issues with feeding yesterday. He didn't really have any interest in eating (which is not like him at all). This morning the nurse tried to feed him and he gaged on the nipple and started coughing a lot and got upset. He now has a feeding tube (NJ) in place through his nose and he is getting a small amount of breast milk through that. I really hope that speech can work with him next week and that he learns how to eat again.

Starting Monday, Tony and I have to learn how to do all of Anthony's trach care. I am somewhat familiar with it, but I sure I will learn a few things too. Hopefully it will all go smoothly.

Tonight Tony and I are having a date night. Sophia is spending the night with Grandma and Grandpa LaFata. I'll miss her, but will know that she will have a good time. We thing she is cutting her first tooth (so early!) because she has been super fussy, drooling a lot more, and chewing on her hands like it's going out of style. I can't picture her with teeth!

I'll keep the updates coming...thanks for all of the support from everybody, it is greatly appreciated!

Sophia is a happy little girl:

 My little man with his trach:

 Sophia and her giant Slurpee, her drink of choice:

 Anthony's new Giraffe...it makes soothing sounds and has a timer on it:

 Anthony with his presents that he got from a gift exchange that we were a part of:

 Sweet Sophia!

It's been a while, a lot has changed...

It's been way too long since I have made a post. A lot has been going on, so I thought the best way to keep in touch with everybody is to keep up with my blog. I tried a carepages site, but I think I am more of a fan of the blog.

Most people know that Anthony has had quite a few hospitalizations and has been in the hospital more than out of it. On Monday the babies turned 3 months old, and we celebrated with a trip back into the hospital with Anthony. He was having more blue spells where he would stop breathing and his breathing was more labored. We weren't sure if this was related to his heart problem or if it was an airway issue.

Lots of doctors came to see Anthony and he was admitted to the PICU. It was then determined that these episodes were airway related. So his ENT doctor (Dr. Taylor, LOVE him!) decided that he needed a trach. There was discussions with his cardiologist as well as the cardiologists in Ann Arbor where he will eventually get his heart surgery. They felt that it was important for him to have the trach. So, that's where we are. Dr. Taylor told us that his airway was 75% of the way obstructed, no wonder why he was having such a hard time.

Having this trach will bring lots and lots of teaching. Being a nurse, I have had experience with them on big people, but not little ones. I will be quite constrained as to where I can go and what I can do with Anthony. I will not be allowed to drive with him alone in case something were to happen. They are strongly suggesting that we get a private duty nurse to stay with Anthony at night so that we can sleep because somebody has to be up with him all the time. Tony isn't too keen on the idea, but we'll have to do what's the best for Anthony. There will be lots and lots of supply needed so it should be interesting.

Yesterday the genetics doctor came by to see us. On Anthony's last admission, he saw him and did a workup to see if there were any genetic issues going on because his heart defect and spina bifida is a pretty rare together. But, the test came back with no abnormality, so that is good. He wants to see Anthony in about 6 months just to see how he is developing.

Today Anthony is doing pretty good. The worst part of all of this is that my baby can't cry. He tries, but only some air comes out of his trach, there is no sound. I also became a little sad because I won't be able to hear him coo again, and that was so cute. He hasn't smiled in 2 days either. I know he has been through so much and is probably uncomfortable, but I would love to see him smile right now. The speech therapist came by to see Anthony and he did really well with a feeding. He is at risk for aspirating on his milk with the trach, so they want to make sure everything is working right. He will be going down for an xray in a little while to make sure the swallowing is all good, then he can eat again like he loves to do!