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!!

Jack is ONE!!!

Jack turned one on March 12th!! We had a wonderful day celebrating this HUGE moment in Jack's life. I know turning one is a big deal for any parent. But for us, this day couldn't have been a bigger deal. As all of you know, Jack has overcome so much this past year. Between two major heart surgeries and 5 heart catherizations, our little man has shown us what life is truly about. Through all the things he has shown us in this past year, I think the true meaning of love stands out the most. I never would have imagined having these feelings that I do now. Everything Jack does brings a tear of joy to my eye. Sometimes it makes me a sobby mess, but in a good way. I have said it before but I don't think I will ever stop saying it, this boy AMAZES me!

Since Jack has turned one, he has picked up some funny habbits. I guess when you are one, you no longer have to wear socks. I chase Jack around the house trying to put his socks back on but once I turn around, he takes them off again. I think he gets that from me, as I am not a big fan of socks either. Another new thing, a dirty look, when he doesn't like something you will know. It is really cute though, he squints his eyes and makes a pout with his lips. Also, no one can pass Jack without him saying "hi".. and he will say it until you say it back. We were in Target the other day and he said hi to a lady about ten times waving both hands until she noticed him and finally said it back, he laughed as if it were a game and he won.

Jack is also a dancing machine. He loves music and loves to dance. Anytime he hears music he will stop what he is doing and push his toys out of the way to make room to dance. I think he gets that from his daddy, for those of you who know Justin, you can't get him off the dance floor at a wedding because he loves to dance.

Jack is such a happy and loving little boy. He smiles at everyone and loves all the attention he can get. He is a busy little boy, as you can see my post is late, he keeps me on my toes. I am one tired mama at the end of the day. I love it though. Nothing could make me happier. Many moms say they need to get away or have a break. I honestly leave for a half hour and can't wait to get back to my little man.

Justin and I want to thank everyone for the HUGE amount of support and love we have received in this past year. It really has been such a blessing to have all of you in our lives, even the ones we barely know but still share your prayers for our family. Jack is going to have another big year. Many more milestones to reach, I think walking is in the VERY near future... But he may also have his 3rd surgery sooner than we thought. Usually its at 2 years old but Jack case is a little different and he may need other things in his heart fixed to function properly and this will bring his surgery sooner. Maybe between 16 to 18 months. It really isn't too far away really. So please keep sending your positive thoughts and prayers, I am a true believer that they are a big help in getting Jack, Justin, and I through it all.

Happy 1st birthday Jack, you mean so much to so many people, and have changed the lives of many... Keep up the fight! Love Mamma and daddy!!!

Update...Update...Update!!

So Jack had a cardio appointment yesterday and it went so well! His levels were where they needed to be and his EKG looked great! The doctor said he doesn't need to see him for another 3 Months!! 3 Months!!! Oh my thats a long time. He went from having weekley appointments to having appointments every two weeks, then monthly, and now... he won't go in for another 3 Months! It's scary and great at the same time. I can't believe he has made it to this point already. What will we do with all our time? The doctor said that he hopes we take this time to get out and about, ofcourse if the snow will ever stop. So come spring Jack and I are gonna get out of this stinkin house and start to enjoy all the great things that we can be doing. We are gonna remain "safe" until RSV (Respiratory Syncytial Virus) season is over which is until the end of March, but after that, look out world here we come!

In the next appointment, in 3 months( i sort of like saying that), we will probably get a better idea on how long we will wait for his next surgery. Timeline is showing it will most likely be before he is two. More like 18 months. With his Atrial Septum issues, the stent they put in to widen the septum will stay the same size, but because he is growing, his body will grow around that stent and that could cause some problems. So that is why they will do the surgery sooner rather than later.. But in the surgery, they will be able to remove the stent and fix the problem so there will be no more worries about the Atrial Septum. I can't believe Jack is one step (one surgery) closer to being more like a regular baby! He still ofcourse won't be able to do all that other kids do, but he will be pretty close.

Jack's doctor also said that he doesn't feel it is necessary to have an at home nurse anymore! WHAT!! But we like her coming!! She really only comes to do weight checks now and was going to stop coming once Jack hit 20 pounds anyways, but we really like her coming. I guess it is time for us to say our goodbyes to Nurse Jen! We will miss you Jen and we thank you for all that you have done for Jack. You have always been right on when you thought something wasn't right with Jack and you were always easy to talk to when I needed some advice! Thank you thank you thank you! We were very lucky to have you!

So I guess we are on the road to being "normal"! It feels pretty good! I have been breathing a lot easier and have been a lot less fearful. Although I don't think the fear will ever fully go away, it is definately leaving more space for enjoyment and happiness!

Leaving with one last thing:

February 7th through the 14th is National CHD (congenital heart defect) Awareness week! Please wear red in support of Jack and all his little buddies who fight this battle everyday and for all the babies and children who have earned their angel wings from losing their battle with CHD's.

Thank you!! and Jack thanks you for all of your support!!

Jack is on the go!!

Jack is fully crawling now! I can't believe it! He pulls himself up and is getting into EVERYTHING! He plays catch with his ball, waves hi and bye, and rolls his trucks across the floor. It really amazes me only because with Jack's condition, he is supposed to be behind in his motorskills, but he is right on. Childrens Hospital called and asked that I bring him in to check on his motor development due to the fact that they are supposed to be behind. This is a study on children who have had Heart surgeries to see how far they have come in development. They want to play with him for a few hours to see how he does and then give feed back to what can be done to help him get further. I told the coordinator how well he was doing and she said it would be great to have him in the study to show that some of these babies can succeed in reaching motorskill goals in his age group. It makes me proud that my son is one of the babies that are doing so well.

I am waiting to hear back from Jack's pediatrician to do a test on milk alergies. Jack since he had started formula, has had a Milk protein alergy. Usually babies outgrow this alergy and can start milk by age 1. The peditrician said to start introducing dairy to him now so that we can transition him to milk at age 1. Since Christmas he has been having yogurt and cheeses as well as mashed potatoes and other dairy products. Well, since we have started those, Jack has had congestion along with eczema and really messy diapers. His congestion got so bad we ended up bringing him into the hospital because his oxygen levels were dropping. He had a full check on his heart, and for once, it was not his heart! Thank goodness for that!... So we left the hospital with the doctors saying its a "virus" and he will get over it. I started putting timelines together on when he has changed things like, diet, sleep, congestion, and his ezcema. It all started with him eating dairy. And as we all know, you aren't supposed to believe everything on the internet...but I googled milk alergy in babies and all the symptoms shown were exactly what Jack had. So I stopped the milk and about two days later all the symptoms went away. Congestion and all.. So I have asked that on Jacks next weight check visit, we re-test him for milk alergy. Hopefully if that is the case we can still find foods for Jack to eat that will still beef him up. He may just have to be the meat and potatoes kind of kid! But thats ok... what ever it takes!!

In 6 weeks, Jack is going to be 1!!!! I can not believe it!! What a very exciting time in our lives! Jack reaching 1-is a huge milestone! I swear he is gonna be walking by then!! And... Justin is finally letting me take him for a haircut! His first little boy hair cut! I will definately post pictures when that time comes!!!! My little guy is growing up!

Happy 10 Months Jack, and happy new year to everyone!!

Jack is 10 Months, I honestly can't believe how fast time is flying by! Not only that, I am really knocking hard on wood as I say this, but this is the longest Jack has gone with out having an unexpected hospital stay. Or any kind of hospital stay at all... It feels so good knowing we have been home for this long and Jack is doing great! He is crawling around, running me over in his walker, and babbling up a storm, and he has 3 teeth! Oh and He LOVES to Dance!
Jack decided that he no longer likes babyfood. Who can blame him, that stuff is pretty blah!! So he has been eating real food. He LOVES grilled cheeses and cherios. He eats chicken, mashed potatoes, peas and carrots,waffles, and pancakes. And anything that needs to be spoon fed, he insists on doing it himself, honestly we have to wait to give him a bath until after dinner because he is covered by the time dinner is over. But, I like that he is persistant on doing it himself. It fits his personality and I love his drive to do things on his own.
We have to go back to the pediatrician in a few weeks to check his weight. He has been in the 1 percentile in the weight category for quite some time now. You would never know it if you saw his cheeks!! Hopefully all this real food will beef him up in no time and we can get him from 16 and 1/2 to 20 pounds by his first birthday, which is in 2 MONTHS!! My goodness I can't believe it! Although, I am sort of resistant of him reaching the 20 pound mark... at that point we will no longer have his home visits from his nurse. I like the nurse coming once a week. She is sooo good with Jack and she definately knows her stuff. I think its just the reassurance that Jack is doing ok and we have weekly visits to tell us so. At the same time, its a good thing because it means jack is doing so well, he doesnt need a nurse anymore!
We also go back to the cardiologist in a few weeks (now doing monthly visits) to check on Jacks blood clot and heart functioning. I have this feeling as though the blood clot has left his leg. I do not see any discoloration of his leg anymore, so I am praying the doctors were right that it was old and will go away on its own. I like not having these weekly visits to the cardio doc, its nice to not have the hospital be the only place we really get to visit. Again, I miss the reassurance of Jack being checked out weekly. But it just means he is doing so great and I wouldn't want it any other way!
Glad to be saying goodbye to 2010. It has definately been the most crazy and eventful year of my life so far. I have learned a whole bunch of things about myself and I have definately done most of my life changing in this past year! Having Jack as a part of my life (actually he is attached to my hip, no joke!) has honestly given me light on who I am really supposed to be. Everything I do now, revolves around decisions that can only better our lives and ofcourse what is best for Jack. I have had to make some pretty hard choices this past year and being a mom to a child with a heart defect was the first of the hard choices I made. I can say though, I have no regrets what so ever. Jack has brought so much to my life. He has brought so much love, strength, gratitude, and knowledge into my world. In ways I have never felt before. I have also met a lot of really great people because of Jack. I am not the only heart mumma out there... there are quite a few that are going through the same things as we are and its so nice to be able to share and compare with other moms. Helps you feel not so alone..
I love watching Jack grow and change. I was going through my pictures of Jack and to see from when he was born till now, what a difference. He is adorable and funny. His personality just makes you want to eat him up! I love how much he loves his mumma, and how much he adores his daddy. He crawls over to the door and says "DA" and it is the cutest thing. I never knew being a mom could be so rewarding!
So Cheers to 2011!!! Let this new year bring great new things, great health, and no unexpected woes! Oh and some more money would be nice too, hehe! I am looking forward to a great year! Happy New year everyone!!!

Happy 9 Months Jack!!

Jack is 9 months old! I really can't believe how time flies! He is getting so big and moving all around. I feel crawling coming on real soon! He talks all day and is starting to eat table foods! I look back at his pictures from day one and it is such a big difference from then to today!
Jack has finally been taken off his Lasix. Its sort of weird and scary at the same time, only because Jack has been on this med since his first surgery on 3/17/10. He was supposed to be off of it after his last surgery on 7/16/10 but with his complications needed to remain on the lasix. After his first day off the med, I was changing his diaper and noticed his right leg looked a little purple and was also swelling. So I called the oncall doctor who was on that evening. She seemed to think maybe he was holding a little fluid and to give him a dose of the lasix to see what would happen. Its weird though, talking to a doctor that does not know Jacks history. I did however give
him the lasix and the swelling went down just a bit. It did come back the following day, so since it was the weekend, I decided to give Childrens hospital a call. They did know jack much better. But They did not think the lasix was the cause but didnt really know why his leg would be swelling and turning purple. I took it upon myself to give Jack another dose of the lasix since it did help it a little bit. Then that monday I called his pedi cardiologist to explain what was going on, also we were lucky to have a nurse visit the same day and she called the doctor too because she didn't like what she was seeing.
His doctor had him come in right away for an ultrasound on his leg, just to see if there was something causing the leg to react this way. His doctor was pretty sure it wasn't because he came off the lasix. Well to our surprise, they found a blood clot in his leg. It was an acute clot and was old. It was most likely from his last catherization. The lasix was helping reduce the fluid build up in the leg so we never knew this clot was there. The doctor then called me and gave me two options: one, I give him two SHOTS a day for 2 months of Heparin (blood thinner) or he has another catherization but on his leg to balloon the clot. Neither sounded good to me but I left it up to the docs to figure what was best for Jack. He called Jacks boston docs and they all decided to hold off on anything to see if it just goes away. Too many blood thinners (he is already on one PLAVIX) could damage his intestines, and since this was an old clot, it may go away on its own. So we will be having weekly appts to check on his leg as well as the function of his heart to make sure Jack stays stable. My immediate fear was stroke!! You always hear blood clots lead to stroke, but that is only if it breaks off and moves to the brain. In his case it would move to the heart first, which is also pretty bad. If it clots the heart, it will take room away from his heart to pump. Honestly, I don't look at this as good either way. But if the doctors aren't overly concerned, then I feel I have to trust their judgement. And since it was a group decision, two heads are better than one, so I guess 4 or 5 must be a lot better. My anxiety is pretty high though, and I worry every day. As if I didn't enough before, right?
So we are just praying this goes away on its own and no special treatment is needed, as much as I would like to nip in the bud and get rid of it. I don't want to put Jack in any more risk than he is. I am hoping he will stay healthy through this holiday and have a nice long break from any unexpected hospital stays!
I will try to keep posting on his blood clot and health. If I dont get on here till after the holidays, then I would like to wish everyone a happy and healthy holiday season!

Jacks follow up appt today!!

What a great day.. Going into these cardio appointments can really do a number on you. I was telling a friend today that I have a love/hate relationship with these appointments. I love going only to find out what I can't see at home. But I hate going because there is always that worry deep in the pit of my stomach that we will hear something bad. But today... I had a pep talk with Jack before our appt. I told him only good things no funny business today. I think our little talk worked.
Jack's doctor said that he looks amazing! That word AMAZING is the best thing I have heard in 8 months. Although I already know Jack is AMAZING, its nice to hear that he is healthy in an amazing way as well.
Jack only had an xray today and we are waiting on the results from his doctor to see if it is time to reduce meds. The meds (diuretics) he is on have the risk of stripping his potassium because of the high dose. So it is important to really watch him and to make sure he really needs these meds. Well, if all goes well with the xray, he will be cut down to half doses, and in two weeks, he will FINALLY be off the diuretics all together. Which is huge, he was supposed to be off them after his last surgery but with all the complications, he needed them to stay stable. He will be on his two blood thinners until his final surgery and then after that, he should not have any meds.. I don't know what I will do with myself with the extra time from drawing meds and crushing pills. Im just kidding, it really doesnt take that much time, but it does make me worry when jack spits them out. Knowing he doesn't have to take them will lessen that worry.
Jack is almost 16 Pounds, so he is finally catching up. I think being back on his normal formula has really helped. Also, his reflux seems to be disappearing and that is another great thing!
So all together, it has been a GREAT DAY! Now to get ready for the holidays.. I can't wait to cook my first turkey and I can not wait to decorate for christmas! I have all my decorations out and ready to go. I want these holidays for Jack to be nothing but wonderful!! There are so many things I am thankful for, but my husband and my son make me the most thankful! I feel truly blessed to have all that I do.
HAPPY THANKSGIVING, hope you all have wonderful days and get really full bellies!!