Thursday, December 6, 2012

Following up with Jack

I was reading another blog today from another heart mom and started to feel guilty that I have not posted in such a long time. I do post a lot on Facebook on how jack is doing but I have been asked a lot from people how Jack is doing by people who are not on Facebook. I have even been asked if something really bad has happened to Jack and thats why there are no more blog posts. After that question,  I decided maybe I should get back on the blog to let you all know how great Jack is doing these days.
Since Jacks last surgery in March, he has had quite the battle with fluid in his lungs. Jack ended up back in the hospital shortly after being discharged for the dreaded Chylos Fluid that he had battled after his second surgery. We kind of expected that Jack would get this fluid again because he had it before, but this time was pretty bad. He was admitted early April with fluid in his lungs in the amount of 750mls. That is about 25 ounces of fluid (imagine of 3 cans of soda just sitting in his lungs). Basically he was drowning. They had to put a small tube into his chest to drain the fluid and he had to remain on watch for about 2 weeks at the hospital. It was a pretty scary moment going back into Childrens with a child fighting for air and turning blue right in front of my eyes. Thank goodness it was caught in time. Since then, Jack was put on a low fat diet,  lasix (meds to keep fluid down), and we had to go for a weekly xray to keep an eye on any fluid. This went on all summer and into fall. Then because the fluid just wasn't getting better he had to go in for another heart catherization... that would be his 9th one. In the cath, they were able to coil off unneccesary veins that could be causing high pressures in his lungs, that would also be causing some of his fluid issue. It was a rough cath for Jack, probably the worst recovery after a cath I have seen him go through. But with in a week he was back to hiself.  Just recently Jack was able to come off the meds and we have had a 3 week wait period to get another xray, which is tomorrow. We are hoping for a nice clear xray since being off the medication. It would also be so nice to nix the xrays all together. It is not an easy trip for Jack. Basically this kid has had enough. My only bribe in  the hospital is the big fun animal shaped cookies they sell in the lobby that he isn't even supposed to have because of his diet! But it is pretty sad when your 2 year old knows when you are on the road leading into the hospital too... starts crying at that point until we hit the cookies!
Jack seems to be doing good now! He has a lot of energy and a lot of spunk which is really nice to see. I enrolled him in a Pre-pre K class that he absolutely loves. It is a great experience for him to interact with other kids and just play like a normal little boy. Recently we had our big interview with Millbury public schools to set up an evaluation to see if we can start Jack in real Pre-K this spring. It all will depend on if he is delayed or not. If so, they will take him right when he turns three in the spring. If he is not delayed we will have to wait till fall. I have to say though, Jack is no where near delayed. Although school for him in the sprind sounds soooooo good to this mamma, I am proud of his achievements and if he has to wait until fall that is really a good thing. We were told in the beginning that for every day Jack is in the hospital would lead to one week of being delayed (he has been admitted total of 8 months of his life).NOPE- Not my Jack. Jack can count to 20, count objects, knows his alphabet, knows all his shapes and colors, and talks very well... heck, he reads license plates in the parking lots. He can use the ipad better than me! Sorry if I am bragging, but it truly is becausee I am just plain ole PROUD of who he has become with all that he has been through.
Jack is going to be a big brother in February. Not really sure how this will all turn out but he seems to be ok with it now. Most of the time when I ask him what is in my belly, he refers to it as a baby... sometimes its an animal of some sort, like a horse! One day Thomas the train was in my belly. It is really amusing to hear what he comes up with. This kid has character and we love it. So hard to get mad at him with his big blue eyes and a smitten grin. He still has this mamma wrapped around that little finger but I love it! So I will keep you posted on results for tomorrows xray and try to be a lot better about getting on this blog! To those of you keeping up with Jack, I really appreciate it!!

Tuesday, February 7, 2012

A New Year, A new Jack

Hey all, and happy new year. We have been so busy lately and haven't had much time to focus on the blog much. So much has happened in the past few months...

We have a "tentative" date for Jack's last of the 3 Stages of Surgeries. March 27Th Jack will have the Fontan surgery. It really is so close and I think I am in partial denial that the time has finally come. I feel weird saying this because I am not the one having surgery. But for some reason, this last surgery, although it has not happened yet, is really hitting me hard. Its not that I loved Jack any less for his prior surgeries or catherizations, I just have this true and special bond with him now. I think it is making this time much harder for me. I think having so much time away from the hospital this past year has made it feel like he is an ok healthy kid. Although I know that is really not so true. I can't believe we are this far already as it feels like just yesterday I was hearing Jacks diagnosis of having half a heart. It is really strange how time can just pass you by.

Another big thing coming up for Jack in March, HE IS GOING TO BE 2!!! Talk about time passing. He is such a little boy now. Sometimes I catch myself looking over at him in awwww for how much he has grown. We will be doing a small family party in the beginning of March so that we can get him bubble bound to stay healthy before his surgery. For those that really thought I put him in a bubble (I'm not that crazy!!) I do not. I just keep him away from school aged children and people who are sick or have been around sick people. It kind of keeps my mind at ease and so that he is healthy for the big day. It does stink because Jack and I do get bored staying around the house for that long. You gotta do what you gotta do- and make the best of it!!

So going into the new year of 2012... ok we are already past a month. I'm a little late with this I know. This year I have many expectations and resolutions that I have set for myself. I will not list my 16 new years resolutions, yes I have 16!!! But I have definitely gotten a good start on most of them. However, I will tell you one that I am truly excited about. I have signed up to walk the NSTAR children's walk on June 10th of this year. I am doing it for a few different reasons. First and main reason is to celebrate Jacks final surgery and how far he has come. Walking in his honor is the least I can do for him. Another reason is for Children's Hospital. They have given us the best gift I will ever in my life receive, the gift of our son. When we had first found out about Jack's surgery, it was really hard to have hope. It was hard to think good was going to come out of any of this. We didn't want a baby shower and we had a hard time celebrating our pregnancy. And now, we celebrate everyday with the beautiful gift of life we have. Children's has and will always hold a very special place in my heart. The people that work there are just absolutely wonderful in what they do. I am very excited for this walk. We already have a great team and we have already raised a good amount of money for this cause. If you would like to donate, please go to NSTar children's walk boston and look for team: My Heart Belongs To Jack. Or if you would like to join us in this walk, please do! The more the merrier!

I am looking forward to good things in 2012. The past year has been rough on us as a family. I'm starting to despise the saying that we are only given things that we can handle. I think I am at my personal limit really. We unfortunately lost our baby to be at 3 months. It was a very sad time for us and I keep telling myself there has to be a reason for it. Maybe it was timing, maybe the baby wasn't healthy or maybe my body wasn't ready to add the extra stress. Justin and I have decided to wait a little while to try again. We are going to take the time we have now to focus on Jack and get through this final surgery stage. We will be able to get to do more things with Jack and enjoy the beach and all the fun summer activities. Then maybe at the end of the summer we will try again.

We leave for our family vacation this Sunday and we couldn't be more excited. We are going up to Bretton Woods for a few days. Justin will ski and I will sled with Jack. Not a ski person. Not really a snow person but its a trip away so I will take it. Next one will have to be some warm weather fun! Jack is going to have a blast and we could all use a time out from our daily routine! I have all my snow gear to keep me warm!

Well a belated happy new year to everyone! Hope this year brings great things for all!!