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!!

Wednesday, November 23, 2011

Thanks, thanks, and more thanks...

Thanksgiving is one of the biggest times of year where we sit and reflect on what we are most thankful for. I do have to say I am thankful everyday, but it only seems right to share with others my thanks on this thanksgiving day...

First as many of you know my biggest thing I am thankful for as I share this as much as possible. Jack!!! He is the best gift I could have ever recieved. He is my everything. With all that he has taught me, you wouldn't think that he could teach me anything more, but everyday he teaches me new love, new hopes, and new dreams. He brings smiles to many people and that I adore. I can't express enough the love I have for this child because it is never ending, and its funny because I have never felt more love coming from another human being than I do with Jack. Even though he can barely talk or use full sentences... his actions say it all! I love that little boy of mine and couldn't be more thankful that we have him here with us! He is a true blessing.

One thing I am thankful for and I probably do not say it enough.. is my husband. Justin is such a hard worker and does so much to provide for this family. He works so many hours and would work more if given the opportunity. When Jack was born, we went down to one income, which was never our plan until we learned of Jacks heart defect. There was no way I could keep a job and stay at the hospital as long as we did and as often as we did. It was our goal to keep Jack healthy and keeping him out of daycare played a major role in doing so. Justin took on the position as the main provider for our family. Because of Justin, we have been able to have everything we need because of his hard work and dedication to keeping our family going. Our house, our car, food on the table, and some extras when we need it. He doesn't ask for handouts and we haven't really had to ask for help, he just works more hours if we need something. We have all these wonderful things because of his hard work. I don't think he hears it enough but I am so very proud of him and so is Jack and we are very thankful to have you in our lives!

I am also thankful to be expecting baby #2 in June!! Justin and I have always talked about having two children before we found out about Jacks heart. But after Jack was born we sort of said no way to having anymore children. I think it was mostly fear of it happening again to the next child and not wanting to go through all that Jack has gone through, again. But after having Jack home and healthy for a year... we started talking about it and decided we really wanted Jack to have a sibling. And it happened!! We are praying very hard for a healthy baby. We have a 5-10% chance of another heart defect, but we are looking at it as we have a 90% chance of a healthy baby... 90 is greater than 5-10!!! So we will find out in January when the doctors can get a good look at this babies heart!! So help us pray for healthy and if you wanted to add "girl" in there too, that would be fine by me (wink, wink)!!

So we have a lot to be thankful for, but didn't want to leave any of you out in my little list of thanks. But I can not express enough how thankful I am to have all of you who pray for our family, epecially Jack. I really think it helps in so many ways, and when we are feeling so down when Jack has his procedures or surgeries, I can really count on all the people who pray for him and us, to lift us back up again. I appreciate the time YOU take out of your lives to think about us!! Thank you, thank you, and thank you again!!!

Happy Thanksgiving!!

Monday, November 7, 2011

Post Cath and doing great!!

Jack had his 6th Heart Catherization this past thursday.. Can I just tell you how weird it was to walk into Childrens Hospital for the first time in a year. It was so strange to be there, but it felt like we were back home. I absolutely love the feeling that you get from the staff at Childrens. I had such fear knowing we were going there, but then once we were there for Pre Op on wednesday, I really didn't have much fear at all. It was more like excitement. I couldn't wait for Jacks boston team to see how big Jack was and how much he has progressed in his development. Seriously, he walked the halls as if he owned the place. And I must say, he was the cutest little patient rocking his hospital gown all through the halls. Each time Jack had a test for pre op and a different nurse came in for that test, it was always a nurse that Jack had in the past and they could not get over Jack. I swear he should have given out autographs with all the attention he was getting.

His Cath went great. In his pre op echo cardiogram, it seemed as though there was going to be a lot of intervention to balloon his Pulmonary Artery, the Aortic Arch, and the Atrial septum. But once he was in the Cath they were able to see his anatomy better and they only needed a slight ballooning of his Atrial Septum, which we knew before even going into the hospital. So his cath only took a couple of hours and he came out of it wonderfully. The surgeon said that Jack was a great example of a perfect Glenn. Which means his anatomy from his last open heart surgery couldnt look better. Great to hear. After the cath, he was supposed to lay flat for 5 hours but by hour 4 they couldnt keep Jack down so they let him get up to walk around and play. This kid has too much energy to waste lying down. He had a very uneventful night, which is great. He was only a little restless but got a great amount of sleep. His mamma on the other hand, not so much. Daddy managed to snag a bed down the hall and got some sleep. I stayed in the room with Jack. Brenda our nurse offered to bring in a stretcher for me to sleep on but I insisted the chair bed in the room was perfectly fine. Well, in the middle of the night I woke up with my legs elevated to the ceiling and my head to the floor and decided it was not comfortable at all. I didn't want to wake Jack up witht the noise of getting a bed in the room so what did I do, I climbed in the crib with Jack. Yes, this mamma shared a crib with Jack. I do not recomend it what so ever! It was better than the chair but man I was sore in the morning.

In the morning, Jacks cardiologist came to check on Jack. He walked around with Jack and I, sat and just watched jack play. I swear he was going to cry. He was in complete AWWWW over Jack. At one point he paused and asked if he could take some credit for how wonderful Jack was. I said ABSOLUTELY. I nearly cried but for some reason held my tears back. It was one of the most incredible moments I have had with Jacks doctor. I honestly adore that man!!! He was definately sent to us by someone special "up there" because he knows Jack better than anyone else, and you couldn't ask for more in a doctor.

So we got to go home the day after the cath which was wonderful. But the saturday after the cath Jack woke up with a terrible cough that worried us. So we took Jack into his local pediatrician. Jack had a bit of swelling to his trachea from the vent so his doctor put him on steriod meds to ease the swelling of his trachea. He is doing so much better now! You would never know he just had this procedure.

Thank you again for all the well wishes. Our family truly appreciates it and one day Jack will be able to say the same, right now his vocabulary is a bit limited. But I know he thanks you! SO heres to an uneventful winter season as in HOSPITAL FREE and a great holiday season spent with our families!

Thursday, October 13, 2011

We're Back!!

Hey Everyone, I would first like to apologize for my neglect to this site! It was not intentional. When Jack was born I had been using my laptop to update his sites. On our third week in the hospital my computer bit the big one! So my mother was so nice to let us use her computer while we were there and we ended up keeping it for a while ( a good year and a half) until we were able to get a new one. Well we got the IPAD2 and as cool as it is, it is limited to the things you can do, and one of those things we were unable to do was update this blog. Then my father came through and sent me one of his extra laptops! Thank goodness for parents! I swear I don't know what I would do with out them!!!!

Now onto Jack, well he is now 19 months old!! I can not believe it! He is doing really well right now and doing everything a 19 month old should be doing. This mamma is exhausted trying to keep up with him all day. He is into EVERYTHING and doesn't stop to catch his breath... or mine for that matter.

On November 3rd our year free of hospital stays will come to an end. It has been so lovely not living the hospital life for the past year. But we knew at one point that it would come to an end. Jack is scheduled to have his 6th heart catherization on November 3rd. During this cath the doctors will be balloon dialating his atrial septum once again. This is to keep him good until his final stage surgery, which is scheduled for MARCH. We already have been told that Jack will have to stay overnight, but if I know my son and I think I do, we will be there a bit longer. If we don't stay longer and he proves me wrong well let's just say I wont be mad at him :)

I am nervous about this upcoming cath because of Jack's age. We just had a recent trip to the ER because Jack was dehydrated and it caused his oxygen levels to get really low. It was pretty scary. But with IV fluids and rest he was back to being himself in no time. As for the day at the hospital, can I just say OH MY GOODNESS that was H-E double hockey sticks. He did not want anything to do with anyone. No doctors, no nurses, NO ONE except for my mom and I. At one point when his cardiologist came in the room Jack shook his head no and pointed out the door, basically telling the doc to get out! Although I did think it was funny, it only gave me a glimps of what we are in for in a couple of weeks. UGGGGGH! Someone may need to sedate this mama for this next cath.

The pictures I have posted are of Jacks first trip apple picking. He didn't do as much picking as he did eating that day. As you can see in the pictures he is just eating apples. At one point I caught him hiding under the tree with a few apples in his lap and bites out of all of them! So cute really! But it was a fun day and I am glad we were able to get him out to the apple orchard.

I have a favor to ask. My mother- in laws step daughter Kristen has been admitted to MGH here in boston while she was on a visit from north carolina. During her stay here she unfortuneately came down with an infection in her heart. She has quite the medical history but this was unexpected and could require heart surgery to not only take care of the infection but also do repairs to her heart. So please keep her in your thoughts and prayers! She needs as many as she can get to get her up and healthy! Keep your head up Kristen- you are in a great place!!

I also wanted to say a special thank you to my mom... Since Jack was born she has been right there by mine and justins side through it all. She hasn't missed anything and We feel very lucky to have her. I feel safe knowing that she knows everything about Jack and if there were ever and instance that we would not be there, I know she would be able to handle anything when it comes to Jack. Everytime I am alone at the hospital with Jack, I can count on my mom to show up and help me. Justin can't be there all the time because he needs to work or we wont survive. And it is hard being there alone and I couldn't do it with out my mom half the time! We are sooooo very thankful. Jack loves his nana, even cries when she leaves. But you can see they are always gonna have that special bond!!!

So finally an update!! Now if you could alll just think positive thoughts for Jack in these next few weeks that he gets in and out of this cath with flying colors!! I know in my heart he will do great, but the extra prayers always help!!!

Wednesday, May 4, 2011

Love that little fighter of mine!!

Jack had a cardio appointment on May 3rd, the first one since February. It feels like it has been forever! We got some great news that healed the knotting in my stomach, well for now at least. I have been dreading the news that Jack will have to have his final surgery early. I also had a horrible feeling that they were going to send us right into boston for another heart catherization. I guess with Jack's history I get these worried feelings. But... Jack actually had a great appointment. Jack's heart function seems to be doing great and he will be a canidate for the fontan surgery, but not until he is between the age of 2-4. What a GREAT feeling! The only thing that could change this time frame is if Jack's oxygen levels start to go down. Which, still unexplainable by his doctor, his levels are pretty high for a hypoplast. He SATS ( oxygen saturation levels) at about 89-94. Which a usual hypoplast can sit inbetween 70-89 and it be ok. This news brings such ease to our family. We can now just relax for a while and work on keeping Jack as healthy as he can be.

Another great piece of news... Jack no longer needs to take his blood thinner Plavix. We just got word last night that all the boston doctors and his local cardiologist spoke and made the decision. Sweet!!! I have been making the joke that I am going to strap a helmet on Jack as well as some hockey gear to protect him from his falls. Every little bump made this mumma so very nervous. We had a few unexpected trips to the doctor after he hit his head to check for brain bleeding. Talk about scary. This kid is walking and practically running, so ofcourse he is gonna have a fall here and there. Because of the Plavix, he would actually bruise right away. His knees were covered in bruises and it was just from crawling. Jack's doctor wanted to take him off this med for that reason. He worried about too much blood forming a hematoma, which would hospitalize Jack. So now that Jack's heart function is doing so well, he no longer needs this med.
We did have one short visit to the hospital this past month. Jack got the dreaded CROUP. We aren't sure how or where. But this is a viral illness that he could have picked up anywhere. Poor kid, couldn't stop coughing and at one point I could see him struggling. I called the oncall doctor and she advised me to get Jack to the hospital right away. They gave Jack a breathing treatment as well as some steroids to ease the cough and get his breathing back to normal. We were there for quite some time because the meds that were given also increase the heart rate so they needed to monitor him. I swear, Jack was healthy all winter long, and now that we are in spring he all of a suddens gets sick and not with just a cold but CROUP. He is doing so much better now and is finally back to his normal, running around getting into everything, self.
What is Jack doing these days... well he is talking up a storm. He even said Jack tonight. Well it was AAACCCK! but close enough. Everytime Justin walks in the door, Jack says Hi Love. Which is really cute because thats what I say to Jack everytime he sneaks up behind me. He is going to be a chatterbox. He does not stop talking all day long and I LOVE IT! He surprises me with new things everyday.

Now that we know Jack is doing so well, we are going to try and plan a small family vacation. Not too far from home ofcourse. It will be nice though, Justin can finally use some vacation time on vacation and not for another hospital stay. Just to go away as a family, anywhere will do. Although I'm thinking somewhere that has a beach involved. Jack loves the tub, so I can only imagine him with a big huge one like the ocean. Oh, I can't wait!

Wednesday, April 6, 2011

Life is good!

I recieved a call from Childrens Hospital Boston a few months back asking that Jack join a study they were doing on developmental and motor skills in children like Jack who have had numerous heart surgeries and procedures. I said yes for many reasons, but the main reason I said yes was because most children like Jack are usually 3 months behind due their surgery history, but for some reason, I never put Jack in that category. He always seems to be doing so well. This was a great visit to Childrens. It was the first time we were there and Jack wasn't having complications. We hadn't been there in 5 months.. Jacks longest break between visits. It felt good to walk in there for a good reason. The doctor leading the study was such a wonderful lady and she took to Jack right away. Ofcourse when she walked up, Jack said "hi" and showed her his truck as he made the Brrrrrrrrmmm noise for the truck (his daddy taught him that). The doctors face lit up with amazement. It was a great way to start the session. Basically the Doctor just played with Jack. She had a bunch of different toys and showed him what to do to see if he could do it too. As she did this, she had a scoring method to place Jack in his developmental level. Jack scored at 14 months in most categories!!! So instead of three months behind, he was two months ahead. Honestly, I couldn't help tears from flowing. But they were very happy tears, I promise! I am just sooo proud of Jack and who he has become already. The doctor was very impressed and said it was so nice to have a child like this on the higher end of the spectrum. She also said to watch out, we are gonna have a talker on our hands. Thats great, I will just buy some ear muffs for when I need some quiet time, Im just kidding, maybe!! To end the session, Jack put us all in shock. This wasn't even a part of the test. There was a small set of stairs in the room. It was just three stairs, Im pretty sure to practice with children. Jack never in his life has been on stairs. Jack climbed right up the three stairs. No fear at all, just went right up them like he has been doing it for years! So impressive because we don't have any stairs at our house. Im sort of saying thank goodness for that because that would be a fun game for him all day, not so much for me. It really was so great to see though. I am so glad Jack is doing so well with all of this. He doesn't seem to let anything stop him. He is into everything and I love it! My house is destroyed by the end of the day, but I wouldn't have it any other way! Between the trail of toys from one room to the next and the tupperware all over the kitchen floor, I can't help but love the mess. He learns knew things everyday. He picks up on things very easily. His Nana is very great about teaching him new things too. She gets right down on the floor and plays with him. I swear when she walks in the door for a visit, he literally wants to jump out of my arms because his play date Nana is here. He knows its time to Rock and Roll and get to play time business. It so cute! I know I don't post all of the time, but I set this page up mostly to give you updates on Jack's surgeries and doctor appointment updates. I realize, as much as I am not on here blogging away... its only because we really are living a normal life. I love that I don't have a lot of updates because things are actually going really well. I am one busy mamma because Jack gets ALL of my attention. We are looking forward to a great spring and summer, with lots to do. We are planning some trips away with friends and Jack and I will definately be spending a lot of time at the beach. What can I say, Life is Good!!