Monday, December 13, 2010

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!

Thursday, November 18, 2010

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!!

Tuesday, November 9, 2010

A year ago this week...

I can't believe that one year ago we heard the devistating news that Jack would be born with only half a heart. I can't believe we have made it this far. I was reading another "heart mom's" post today and it was her 100th blog post about her daughter and her fight with HLHS. It made me realize a few things, one being, I am a major slacker when it comes to updating this post. But also, it has been one heck of a year and I am so glad we chose to fight for Jack rather than taking the other road.. which is now the road less traveled by most. There were so many things that my heart mom friend mentioned in her 100th post that I can truly relate to. Not just the heart things but the mom things too.
Jack has been the greatest gift I could ever recieve. I enjoy every moment I have with him, even if its sitting in a hospital room for days and days, its time spent with the most wonderful thing that has come into my life. His SMILE, his belly LAUGHS, his CURIOUSITY, his STRENGTH, his FIGHT, and His HAIR (had to throw that in there) bring me so much happiness everyday.
I can tell you that our lives have changed so much. A lot in which it has taken time to get used to, and a lot in which we didn't want to change but knew we had to in order to make this work. We are trying to manage now with one income, one car, living at hospitals for weeks at a time, spending time apart because we (jack and I) have to be at the hospital and justin NEEDS to work. It hasn't been easy. But I wouldn't change it for the world. If this is what we have to do, then we will do it. We will completely simplify our life to where we need to be a little less than comfortable and if it is giving up the bigger and better things for now, then it has to be done! I just keep telling myself everythings gonna be alright. I always think of that song by Bob Marley, Three Birds. "Everythings gonna be alright"... It just has to be!
This has been a complete test of my strength. I always thought I was independant and strong. But not until this life change, I realized I really am strong. I have learned so much from this experience. Heck, the doctor asked me if I wanted a job because I read the echo before he was able to open his mouth and I read the xray with the tech and said "I see fluid" and when the doctor came into the room he said he hadn't seen it yet and I told him what was there. I was right! I never would have thought that I would have meds and doses in my head and know what Jack should be on based on his weight. I have learned to question doctors, yes they are experienced, but sometimes a mom just knows her child more. And sometimes me knowing him more actually gives doctors the answers they are looking for. I told a doctor my remedy for getting Jack to eat and he was amazed, like why didnt we think of that amazed. Although I never wish this on another, in a way it feels as though I was meant to be a heart mom!!
He is doing great. His levels have been great and he is happier than ever. As some of you know we had Jack's christening a few weeks back, what a great day that turned out to be. But.. we ended up in the hospital ER the next day because Jack woke me up early in the morning with very heavy breathing. I brought him in to the hospital to make sure he was ok. His doctor came right in to meet us at the hospital and after xrays, ultra sounds and monitoring, we were sent back to childrens. The last cath that jack had did not last as long as we had hoped. With what the doctor said, we were going to have a cath and if the problem couldnt be fixed there, an unplanned surgery would happen. After the cath and another few days of monitoring, the doctors beleive that Jack would not need this unplanned surgery. Sweet Releif!! We are in hopes that this will be it until the next planned cath which should be right before his surgery at 2 years old. It would be nice to have a clean break from hospitals for a while. He is doing great now though. Rolling all over the place, talking up a storm, and still fighting.. His early intervention puts him at 10 months and being only 8months old (this week) thats great to hear. She said she was amazed at his mobility after being on bypass twice. It usually slows down the brain. We are thinking maybe it did the opposite ;)

Well if this wasnt the longest post ever!! Im off to bed. Still havent gotten the sleeping through the night thing down yet! Soon I hope but its ok, I like snuggling him as much as I can, so if its at 2am- so be it! Good night all!

Thursday, October 14, 2010

Two weeks post cath

Jack is doing really well. We are so happy the doctors were able to find and fix the problem with his Atrial Septum. He is a completely different boy now. His breathing is so much better and his oxygen levels have been staying in the high 80's where they are supposed to be. Jack will have another cath in about 6 weeks. The goal is to prevent the Atrial Septum from closing again so they will keep ballooning until they can go in and remove it during the last surgery, which will be bumped up as well. Not sure when. So he should maybe have about 3 or more caths until then.
Halloween is coming up and Jack has 3 costumes.. We need more halloweens!! He is going to be a Giraffe (pictures posted on this site), a lobster, and a skeleton. It is so much fun to dress him up! He doesn't seem to mind it either, at least I don't think so- hehe!
Jack is doing so great in his developmental stages as well. He is talking up a storm and its funny now because you can see him trying to use his tongue. He also waves hello and dances to the mickey mouse HOT DOG song. It is sooo very cute. I just can't believe how fast he has grown. He FINALLY hit 15 pounds! He has been on the verge of 15 for the past month but with all that was going on, he was unable to gain the weight. Soon he will be off the special formula and back on his normal formula so we should se him gain a little faster. He is also eating fruits and veggies. Taking it slowly though. But he loves it and can't seem to get enough of it.
He is also down from 7 Meds twice a day to only 4 meds with lower doses!!! Big change and it must be so much easier on his little belly. I couldnt imagine taking that many meds...ick!! Soon he will only be on 2, both blood thinners to reduce the clotting in his heart. He should be off those after the last surgery.. He's getting there.
Now we just have to work on sleeping through the night. I think the hospital stays have sort of steered us away from any schedules. So that is something we are working on. Mamma needs her sleep. But I actually dont mind so much waking up to feed him. He loves to cuddle after that midnight bottle and its really nice to just hold him while he is so content. But someday (maybe soon!) he will sleep through the night.

Thursday, September 30, 2010

Another day another Cath!..

I haven't updated in a while only because it felt great to have a break from the "heart stuff" for a while. We were kind of going on with our day to day stuff as though nothing was wrong with Jack. Well a few weeks back, we received a call from Jack's heart doc and when he said do you have a minute, I knew something was up. He went on and told us that Jack's atrial septum has been growing back which has stopped the amount of blood flow that needs to go through that chamber from being a good amount to a not so great amount. With this, he would need another catherization. We knew he would be going back in 6 months anyways to re-dialte the pulmonary arteries but we didn't know this would be coming up as well.
So... yesterday Jack had another catherization. In this cath, they actually gave him a great tune up. They dialated the pulmonary arteries, coiled pulmonary veins, and put a stint in to keep the atrial septum open. It was a rough day for Jack. Although he did great in the cath, He was in a lot of pain afterwards. Lets just say neither of us got any sleep last night. The nurses were so kind to come and take turns consoling him. My poor little guy. This morning when he woke up from his two hour cat nap he seemed to be in much better spirits. His doctor and I went over what the next steps are and went over the additional meds he will be on. He is now on 7. Jack will have to have another cath in the near future to redialate everything that was done yesterday and if it doesnt work, another unplanned surgery will take place. So we are in hopes that the next cath will do the trick. Jack's doctor kept saying that Jack is a strong little boy, sort of like he was in amazement with how Jack has handled all of this. He felt bad for all the we have all been through, and I had to say to him, its not really me and justin going through this as it is Jack going through it. We are just his cheerleaders.. He amazes me! So Truly amazing my son is.
We are home now, relaxing. I think Jack is starting to get to that age where he knows something is going on when we go to the hospital. You can see it in his eyes. Only tells us that it will get worse and worse as he gets older. I wish this wasn't happening, but without all the wonderful people taking care of Jack, he wouldn't be here. So I have to leave my trust and hope with these doctors that they are doing what is right for our son. I believe they are. His doctor in boston is one of the most caring and wonderful people that I have gotten a chance to get to know. I know and can tell how much he cares for my son and it makes this situation so much better. I don't want to head back to childrens anytime soon, but if we have to I know its the best place to be!!

Thursday, August 26, 2010

Follow Up appointment with Cardiologist

Jack had a visit with his worcester cardiologist today. It was a long appointment including an echocardiogram and an xray for Jack. The echo looked good and we are still awaiting the results to his xray. Hoping the fluid keeps getting smaller in his lungs. Jack's doctor and I had a long talk about Jack's not so distant future. Jack will definately be going back to childrens again a lot sooner than we thought. He will have to go back in 6 months to a year for another heart catherization. When they last did this procedure, they ballooned the aorta and the pulmonary artery. Well, the aorta will not have to be widened again but the pulmonary artery will have to be ballooned once again before his 3rd surgery. The pulmonary artery is different from the aorta as it acts more like a vein, and veins tend to shrink. So they need to keep it widened to make sure it functions properly.
Jack's doctor and I had a very extensive conversation about the upcoming winter season. All my fears have come back and we basically have to keep Jack in a bubble for another 6 months. As the doctor said, it is crucial that Jack stay healthy during this season. Holy Anxiety!! It really scares me to think that even just a common cold could put Jack back in the hospital with much more risk than just the common cold can give you. I am truly scared.
I just want to let the people around us know, that we would love more than anything to be able to share the joy of Jack with everyone in our little world. It breaks my heart that I can't be like any other new moms out there who get to show off their bundle of Joy. Especially with Jack being such a fighter and all that he has been through, I would love to spoil him with all the attention he deserves. But unfortunately we can't. Jack's health is more important to us than anything else we could ever imagine. I do hope that people understand. For the time being our lives have changed but thats all it is, is change. And to deal with Change you just have to except it and move on. So this is our new life and I can't lie, if it weren't for Jack I probably wouldn't enjoy it so much. If I am stuck in this house for months on end, and I have Jack with me, I am probably one of the happiest and luckiest ladies alive. One day Jack will be healthy enough to get out more, and I can't wait for that day!!

Wednesday, August 25, 2010

Another visit to Childrens Hospital

Jack spent last week at Childrens hospital due to fluid returning into his lungs. We think he was taken off his special formula too soon. But after a week of meds and observation he has finally gotten back on track and the fluid is going away again. During his stay at Childrens they were also able to diagnose Jack with Reflux. He has had many symptoms of Reflux and now he is on Medication to relieve his pain and symptoms. So although it was an unexpected visit to the hospital, we did get a lot accomplished while there. Jack is eating great again and we even started putting rice cereal in his formula, and he LOVES it! We will get his weight back on track.
Jack is doing very well now, and he is definately happy to be home. Mee too! Soooo glad to be home again. It's nice and quiet here...

Friday, August 13, 2010

4 weeks post op!! Jacks now 5MONTHS

Jack is 4 weeks post op today and he turned 5 Months yesterday! He had a cardiologist appointment yesterday and his doctor said he looks fantastic. We are still going to have a weekly appointment to keep an eye on the fluids in his lungs and he has a leak from his heart going to his liver. So we will have another echo this week to see how that is doing. We thought we were done for a couple of years but at yesterdays appointment, Jack will need another catherization in the near future to again widen the aorta and the pulmanary artery. Those are both the things they ballooned in his catherization 3 weeks ago. As Jack grows he will need to have them widened again sort of like another "tune up".
Jack is also back on regular formula. Im hoping this stuff fills him up and we go back on his sleeping through the night thing. He has been waking every 2 and a half hours to feed. Boy am I tired. It's like having a new born all over again. Don't get me wrong, I love the time I get to spend with him, but a girl needs her sleep! I am one tired Mamma!
Now that Jack is on his formula I asked the doctors if it would be ok to start giving Jack cereal. They were fine with it. So we gave him his first rice cereal last night, HE LOVED IT!!!! He ate it as if he couldn't get enough of it. Its so exciting to see him do new things. He holds his bottle, grabs his toys, rolls around, talks like crazy, and so many other things. He recognized himself in the mirror and just cracks up like its the funniest thing. Last night I was bouncing him up and down and when we were done, he would look at my mom like, did you see that nana? It was sooo cute! I love this little boy. Makes me smile every day.
Summer is almost over, I can't wait till the fall. This summer has been a humid one, being stuck in the house is no fun. I think and I am hoping I am right that this fall will be a good one!

Wednesday, August 4, 2010

Home Sweet Home... such bliss!!

Sorry for the late update. We got home monday night but I have been trying to get settled and get back into the swing of things. Jack is doing great. We had a visiting nurse come yesterday and he looked great. We go tomorrow for an appointment with his cardiologist at UMASS Memorial. He will have an xray and labs to see how the fluid in his lungs are doing.
Leaving childrens was a great thing but also very sad.. It was very cute, all the nurses were giving him kisses goodbye and Dr. Breitbart held Jack one last time. I was so sad that my camera was already in the car, because it really would have been such a great picture. But Dr. Breitbart said that he will see us in two years for his 3rd and hopefully final surgery. That felt good to hear. Hopefully all will go well with Jack and we wont have to go back to childrens until the next surgery. We are still going to be cautious with Jack. Ofcourse we will try to get out of our bubble in a few weeks after he is fully recovered from surgery. But we don't want Jack to get sick and end up back in the hospital. A common cold could be a really bad thing for Jack. It really is a scary thing but we still have to live a normal life as much as we can.
Justin and I are going to take Jack to the cape for labor day weekend. We haven't been on vacation since our honey moon and it will be nice to have some time as a family. Knowing that the cape isn't a far place from the hospital I know it will be a safe venture.
Thanks for all of your prayers. Two of our friends with sons who have HLHS will be having surgery tomorrow. Dylan will have his first of the 3 stages and Jacob will be having his Glenn just like Jack just did. So if you wouldn't mind, please share your prayers that you have been so generously giving for Jack to these two little boys. Both are fighters and both have wonderful parents that will see them through this scary time.
I will update after Jack's appointment, hopefully with good news that his fluid has decreased. I have been giving him four different meds twice a day and if all looks good, they will decrease the meds. Heres hoping!!

Sunday, August 1, 2010

Update on Jack

After the Catherization, they realized that Jack has Chilous. Its a fatty build up in his lungs. Weird though, the only thing to fix it is formula and and extra diuretic... So since the cath, Jack has been doing great. His oxygen levels have been back in the 80's and his heart rate a lot lower than it was. He seems to be Jack again.
We are waiting to have an xray in the morning to see if the fluid reduction has been consitant. If so we go home, if not we stay until they get it under control. But for the last few days there has not been any increase in fluid and some of the fluid has actually gone away.
So here's praying Jack is ok. Sorry I didn't update sooner. It has been a bit overwhelming and busy here. Now things are calming down. But keep your fingers crossed cause I know mine are that we go home tomorrow.

Wednesday, July 28, 2010

Possible Catherization today...

So this morning Jack's Doctors and Nurses met with me to come up with a plan. We went through the possible steps to figure out where the fluid in Jack's lungs is coming from and why it keeps coming back. This mornings xray showed more fluid than yesterday. First step would have been IV meds, second drainage from his lungs to see what the fluid is, and third would be a catherization to find out what the actual problem is. I really did not like solution one and two only because, neither really can completely get rid of the fluid and they are just temporary solutions. The catherization would let them go in and find out what is going on inside Jacks heart and see if there is something that needs to be fixed in order to get this fluid gone for good. Jack's doctor assured me that this problem going on is only a post op problem. Its not permanent. So that was good to hear. Also with this catherization, Jack was supposed to have one done in 6 weeks anyways so they could most likely take care of that while they are in there.
Hopefully they can get him in today as he is on the wait list.. they have already been preparing him to go in today! BIG PRAYERS FOR JACK!!!

Tuesday, July 27, 2010

Scary day!

Today was a scary day. Jack's oxygen levels dropped during the night to 65. He is supposed to be at 75. They managed to get his levels back up by giving his meds a little early. He has become dependent on his meds. During his morning feed, he gave me a real scare. He turned completely white with blue lips. Never have I seen him like this. The nurses came in and moved him around, tried to wake him up and it took a few minutes for him to respond. He finally gave us a one-eye opener to let us know he was ok. After this happened the nurses watched him and again gave him meds early to get his oxygen back up. I swear when Jack lost his oxygen, I lost my breath.
He came around with the meds but then they decided to put him on oxygen to give him that little boost. All morning he just wasn't his happy Jack self. He was groggy and didn't even crack a smile. This was clear indication that Jack is not ok, even our Nurse Practioner saw him and said he didn't look like himself.
The new plan was to give him a 3rd diaretic to decrease any fluid. They gave it to him at around 4 so now we wait to see the effect it has on the fluid in his lungs. The nurse did try this afternoon to take him off the oxygen but his levels shot down again. So he needs to stay on the oxygen. Talking with his doctor today, this all could be happening because of another problem and not the fluid in his lungs. His pulmonary artery may not be doing the job it is supposed to be. So if the meds don't do the job in the next day or so, the next step would be to bring Jack to the Catherization lab again to check his anatomy to see what is going on. If they find the problem there, they may be able to fix it in the cath lab. If not, another surgery may have to happen.
I hope and pray this isn't the solution but I would rather get the problem solved then keep playing with meds to try and fix something that can't be fixed with meds. It is all very scary and I don't want to put Jack's little body through surgery again.
After today, it hit me... nothing else matters to me but my son's health. I could say time and time again, are we being punished for something and that is why this is happening to Jack? But then how could I say that when Jack is the most precious gift I have ever received. He is the best thing that has ever happened to me and if all this is what it takes to get him home with me and for him to be safe then lets do it!! If I have to live at this hospital for a year, I will do it. If everything else in my life stops, that is completely fine because I get to spend my most important time with the most wonderful being ever!! I am one lucky girl. He wins me over everyday with his morning smile when he wakes up and through the day until he is cuddling on my shoulder to go to sleep. He already has me wrapped around his little finger and it certainly is a little finger. I just adore him and want nothing but for him to be ok.
Please keep saying prayers for Jack... father bob came in today and we said the peeing and pooping prayer. I know it sounds silly but that is one way that gets the fluids out of Jack, so it seemed appropriate! It was actually really cute. Hope it works!
And thank you for all of you that came to visit us these past few days! Jack and I really love the company! Its always nice to see familiar faces when you aren't in a familiar place!!(actually I could probably be a tour guide for childrens hospital at this point!!!!hehe)! But again thank you!

Love you all, gotta go to bed now- nite!!

Sunday, July 25, 2010

Prayers for Baby Mia!

Baby Mia, another baby with HLHS, lost her battle with HLHS today. I can not imagine what her family is going through. I pray for them and know that Mia is sending her love and strength to get them through this very hard time. Please send your prayers to Mia and her family.
Everytime I read of another CHD baby losing their battle, I can't stop the tears from falling. It hits home pretty hard. I can not imagine the pain that Mia's parents are having right now and I never want to live it. Although I fear it everyday!
Today, I will hug Jack a little tighter and tell him I love him a million times more. I can't imagine life without him!!! Keep fighting baby Jack, your strenght is what gets me through my day!!! I love you!!!

Cross your fingers!!!

So Jack is doing great in the recovery department. But he is still holding fluid in his lungs. They have tried extra meds to decrease the fluid but with that he became dry. Not in his lungs but everywhere else in his body. He had let out so much fluid that his potassium decreased so they had to stop the extra meds. With that, he seems to be stable but there is still a little fluid left. Most likely, they will send us home on his lasix meds but instead of the two doses we were doing at home before, it will now be three. Hopefully this helps because we do not want to come back here and go into the ICU to put a chest tube in to drain the fluid. We will be able to be home and just continue our follow ups with our Cardiologist at home. So say some prayers that this works out.
We have been sitting here for the past few days a bit bored. Had some visitors finally and it was nice to see some familiar faces. Thank you for those who came!! The nurses here absolutely love Jack. He has a huge fan club here. We had one nurse yesterday who wasn't assigned to Jack but kept coming in to see if she could steal him to go play. It was really cute! A few of the nurses have been calling Jack, Jimmy Neutron (a cartoon Character)because they have the same hair do. It is pretty funny because I googled Jimmy Neutron to see what he looked like and he definately resembles Jack! So funny! We truly love the attention we get here but can't wait to be home. So keep your fingers crossed that tomorrow is the day!!!

Friday, July 23, 2010

Not going home...

The fluid in Jacks lungs is getting better but is still not completely gone. I have been told that Monday would be the earliest possible day to go home. If anyone would like to visit, you can give me a call and we can see if its a good time or not. Jack and I are pretty bored and lonely here. You can only walk around this place so many times before that doesn't even work to calm him down. Ugggg my poor little guy! Get better so we can go home and recover in a more peaceful less people poking at Jack environment!!

Wednesday, July 21, 2010

homebound?? Could be...

Dr. Breitbart said that he is optimistic of us going home tomorrow but we still need to get an xray in the morning to make sure the fluid is gone. Jack's new favorite nurse Elizabeth is here tonight and she said she would sneak him in at 4 in the morning to get it done first so the doctors can get it right away! I'm hoping it goes well. It would be nice to get home. Jack is bored here.. I think I walked this floor about 80 million times today. He is really making me exercise that's for sure. Not so bad cause I could really use it, but you can only walk in a circle so many times before you start to go crazy! He just does not want to be in this room anymore. We played the game of walking into our room and Jack crying then walking out and immediately stopped. So that tells me he is done!! Im going to bed with positive thoughts that everything will be ok tomorrow.

Tuesday, July 20, 2010

Change in Plans... we have to stay

During our routine xray before we got to go home, they found some fluid in Jack's lungs. So we have to stay a few more days. They are hoping that an increase in diuretics (spelling sorry) will help decrease the fluid. If not, worst case senario they will have to put a tube into Jack's chest to drain this fluid. Hopefully that will not be the case. I will definately keep you updated.
So now it's just me and Jack. Justin had to go back to work and this makes me sad as well. It's nice being here as a family, but someones gotta pay the bills. So hopefully these next few days will fly by and Jack will keep getting better. As much as we would love to be home, we know this is a safer place for Jack to be. God bless my little boy. To see him already go through what he has in his 4 months of life, I would love for him to have a healthy break. We already know we will be back here in 6-8 weeks for a Catherization. Jacks Aortic Valve is narrowing so they will be doing a balloon catherization to widen the valve in the very near future. Hopefully after that, he will have a chance to have a break from the hospital. Till then... keep on fighting Jack!!!

Monday, July 19, 2010

Almost Home

We got news that Jack may be able to go home tomorrow. He needs to have another sedated Echo to make sure everything is going the way it should inside his little heart. If all is well, we go home. So I am hoping so much that this happens. It is nice being here with all this care, and I most certainly do not want to rush things. But, I think it would be a much peaceful place to recover if we were at our own home. We have a roomie here and they are very nice. It is just hard working on someone elses schedule while we are trying to keep up with ours.
Jack is happy as can be though. He is laughing and smiling just like before the surgery. He is also flirting like crazy with all the lovely nurses here. They just can't get over him. Dr. Breitbart also brought some of his students in today and said to them that this is not what a heart baby looks like with a big smile on his face. That gives me a huge sigh of relief that things just may be ok afterall.
Another Heart Mom Kathy shared a story on facebook tonight of a man, yes I said MAN, age 32 with HLHS. This also gives me huge hopes that we will see Jack graduate highschool, go onto college, get married and have a family of his own one day. Now I don't want to push all that to happen right away ofcourse. We are still working on getting up on his hands to crawl first. But in the future, it would be nice knowing Jack is going to get to do all those things.
We are going to give Jack another month to fully recover before we start getting him around other kids. Just to be on the safe side. I would like to see him have a safe and healthy recovery. So give us some time and then its time to play!!
I am going to bed feeling blessed with a wonderful child tonight. I don't know what my life would be without Jack. Justin and I are lucky parents! I can't wait to later share with Jack the pictures we have taken and the little things from the hospital we have saved to show him what a hero he really is.
Good Night All!!

Sunday, July 18, 2010

Moving to the east wing...

Jack has progressed so well with surgery, he is now going to the East wing for the remainder of his stay. How long? I'm not quite sure. But he is just doing so well. He is eating and sleeping great. He does get a little fussy here and there, most likely the discomfort and the headaches that come from the re-direction of blood flow. To help that we are staying on top of his tylenol doses. His nurses are great with that too. They want to make sure he is as comfortable as possible.
Maybe this was the "easier" surgery. He seems to be flying through this one even better than the first one. I know I can't stop saying it, but this little boy is AMAZING... he truly is. I am one proud momma!!

Saturday, July 17, 2010

What can I say... My son is AMAZING!!!

After arriving at Children's at about 7am yesterday morning a nurse brought Jack, Justin, and I to a holding room before surgery. I couldn't believe how great Jack was doing considering he hadn't had a bottle since 11pm the night before. He ususally is a bear if you dont feed him on time. Really, that is the only time he cries. I couldn't believe how great he was being. In the holding room we put Jack on the bed and pulled the mini TV over to him. He watched Mickey Mouse club while sucking his fist and twirling his hair through his fingers. When the Anestesia team walked in, they couldn't stop adoring how cute he was. Even though he was not fussy they gave him a little something to calm him for when they took him from us. That must not have tasted very good as he was trying to spit it out. But it started working fast and he was definately out of it. It made me feel good though, they didn't take him from us wheeling him out on a bed. One of the nurses carried him and cuddled him. It felt great to see.
Surgery could not have gone better. The procedure still took about 7 hours and then we had to wait another hour to see him. But my goodness, he looked great. The first surgery, he had about 16 lines and wires in his body, this time only 6. And once again they were able to clothes his chest after surgery.
We got up to the CICU where Jack is and all the nurses were going gaga for him. They couldn't stop saying how cute he was and they could not believe how big he was. At first they had him in a baby bed, usually for newborns and small babies, he was almost going to hang out of it so they put him in a normal crib. My big baby!!
At about 10 last night they took out his Vent to help him breath. He had been breathing on his own since right after surgery but they kept it in just in case. Before the surgery, they told us that it could take about two days before that even came out. My son is pretty impressive. Today we are going to try and give him normal formula instead of pedialite. Which is great. Im sure he is going to be so happy for that. He sure does love his food.
We were told the minimum stay for this surgery is 5 days. So we will see how this week goes. During Pre-op, the surgeon and his doctor couldnt stop saying how robust and healthy he looks. They stated that they were blessed to work with a patient like Jack! It is such a great feeling hearing such wonderful things.
You know babies have milestones like crawling, walking, eating solids, and etc. But everyday for Jack is a milestone. It's hard because I don't think people on the outside looking in really know this. Which I don't blame anyone for. It's just that knowing that everyday my son makes it to the next day is a huge deal to us. We live in fear a lot of the time but for a good reason. I have been pretty strict with being around other kids and too many people at once, but I have to say, my son has not been sick once since we came home from the first surgery. I will do everything in my power to keep him as healthy as possible. And I know he is going to get sick at some point. But if I know that I am doing what I can to help stop that, then I feel better and my son stays healthy. Since this surgery is over, I will definately lighten up a little bit, but ofcouse I will still be extremely cautious.
Well I am going to get going now but will be back soon with more updates!

Wednesday, July 14, 2010

Pre-Op Tomorrow....

Well, the time has come. I can't believe how fast this day has approached us. We go in tomorrow for Jack's pre-op to fridays surgery. Unfortuneately I was made aware that Jack will be sedated for the Pre-op as well as fridays operation. I guess that when jack was a newborn, they did not need to sedate him for the Echo because Jack barely moved. But now since Jack is a rollie pollie and loves to move, in order to get a great echo he will be sedated. So with that, we may have a rough morning because Jack can not eat past 430am. Not looking forward to that at all. My plan... wake him up at 4 and feed him with hopes of him falling asleep until we get to our 730 appt. His Echo is at 1030 so hopefully we can keep his mind off food until that time. My little guy loves to eat so lets hope this goes smoothly.
I can't wait for Jack's surgeon to see how big he is now. Last time we were at Childrens, he said Jack was overweight- not in a bad way but for a heart baby. Wait till he sees him now. He is a moose. A cute moose that is. He has rolls all over! He has gained weight just like a normal 3 month old baby and going into surgery should be 14lbs on the dot. We fattened him up just like the doctors said to do. He has done so great!
I can't hide that I am very emotional right now. Today I went to pick up a photo that was reordered from Jack's 3 month pictures. When they opened it to show me, my eyes started gushing with tears and I couldn't control it. I think the girl behind the counter thought I was a crazy and too emotional over a picture. But this picture just came out so great and his precious face said it all.
I have to tell you Jack is just such a great baby. He barely fusses except when hungry, sleeps through the nite, laughs and talks all day. I honestly could never complain. You would never know he has half a heart.
Justin and I adore our little guy and don't want to see him go through this again. But luckily we have so much love already between the three of us and that makes us whole as a family and that gives each of us strength to keep going. So Jack, Keep going lil buddy!! You can do this!!! We love you so much!
Well time to get those prayers rolling and help my little guy get through this with flying colors!! Thank you all for being there for us, we truly feel blessed by all of your love! THank you thank you thank you!!!

Friday, July 9, 2010

One more week..

So one week today Jack will be having the Stage 2 Surgery, the Glenn. I can't believe how fast 4 months have gone by. It seems like we just got home and now we have to go back again. From what I have read from other heart moms, this surgery has been the "easiest" one. It is a less invasive surgery and does not require Jack to go on Bypass again. I think that it isn't as long either. The first one was 7 hours long.
This one seems really hard on me though. Not that the first wasn't hard to see Jack go through open heart surgery. I guess it's just that I know Jack so much more now than I did before. I spend every waking moment with him so I think handing him over to the surgeons and doctors is going to be the hardest thing yet. I am anticipating a good turn out though. Jack has been so strong and we haven't had any problems in between these surgeries, I think he is going to remain my little fighter and get through this like a champ.
We go in on thursday for the Pre-Op appointment and then back the next day for surgery. We should be at Childrens 5-7 days if all is well. I will try to post as much as I can on friday. But I can not promise as I know its going to be a hard day. Please keep my little heart warrior Jack in your prayers!!

Friday, July 2, 2010

The countdown begins... 2 Weeks closer to a healthier heart!!

Last night the show Boston Med shared a story of a family having a baby with HLHS. It brought back so many memories from what Justin and I had gone through in the begining when we found out that Jack would be born with half a heart. Tears came to my eyes because I could just picture being there all over again. Seeing how the young couple reacted to many of the same things we had gone through, I could feel their every emotion. Alot of the things that the mother Renee had said I know that I had said too. Especially the part about not wanting to get too close to the baby because of the fear of losing him. I can tell you I felt the same exact way.
But now, I am so glad that we decided to go through with the 3 stage surgery because Jack deserves a chance. He is the strongest person I know and with that I have learned so much from him. He is our little heart warrior!!!
Its sort of strange how when I first found out about Jack's diagnosis, I had never heard of HLHS before. Now it seems to be popping out everywhere. There are 3 Kids in our town alone who have HLHS and two in the surrounding towns. I met a lady in the waiting room at Jack's last appointment and her good friends son has HLHS and he is 7. They live right up the street from us. There are so many support groups and sites where parents cant talk about what is going on or just ask questions of other peoples experiences. Its such a great feeling to know we are not alone.
Well it is two weeks from today that Jack will be going through Stage 2 of his 3 surgeries. I have butterflies and mixed emotions all over again. At least this time we know a little more of what to expect. Although that doesn't take the emotions of if our son will be ok or not.
I thank all of you who follow Jack. It means the world to us. If it weren't for all the prayers and people thinking of Jack, I truly think things would be so much different. We are lucky to have all of you in our life, even the ones I haven't gotten to meet yet. Thank you so very much!!

Friday, June 25, 2010

Just Realized...

I just realized today that Jack's surgery is on the same date a year ago that I found out that I was pregnant with Jack. How neat!!! Just thought I would share.

Jack is doing great today. Got some fresh air before the heat starts to kick in and now he is sleeping, well, like a baby! He really is such a great baby, I love him to pieces.

Justin and I were finally going to get our first night out together in I can't tell you how long. My mom so kindly offered to babysit for a little while. But unfortuneately Justin got a call to take a trip to Niagra Falls for work. What a bummer... it has been just about a year for me since I have gotten out. I was really looking forward to it. Ohwell, next time.

Hope everyone is having a great day!! It is beautiful out!

Thursday, June 24, 2010

Last appointment before surgery

Today we saw Dr. Sanghavi (cardio doctor)thhe last time before Jack's upcoming surgery. It was a great appointment. Dr. Sanghavi said that Jack looks great! He is in the 26th percentile for growth for a 3 month old baby. That was wonderful news. It's amazing to me to hear from so many people especially heart doctors and nurses that Jack doesn't even look like a heart baby. He is definately chubby and he has great rosy coloring to his face. It feels so good to hear those types of things.
We went to the doctor this past monday for feeding issues. He isn't taking as much food as he used to. He has been on a higher calorie diet since birth so I just have this feeling it is too much and too heavy for him. We are trying lower calories now and he seems to be doing better with it. He is almost 13lbs!!!
I guess it has been planted into my head that feeding is a major thing with heart babies, well more so the gaining weight part. So I get nervous when Jack goes through any type of changes. Its hard because I try so hard to compare him to a regular baby but I always question if these changes or differences are because of his heart. I try and trust my own instinct as a mom, but I can't help but call the doctors because I have that worry in the back of my head.
So just a couple weeks till surgery and hopefully things will be so much better. We feel sort of hermitted into our house these past few months. It has been so hard because we want to see our families more and Jack can't wait to play with his cousins. But we are trying to keep Jack from getting any sickness before surgery. If he gets sick we have to postphone surgery and that will be more waiting time. But soon... we can get back to our "normal" life. What ever normal is?
I changed my site because this one was a little easier to use and post pictures. So hopefully this one will get more frequent updates! I will try my hardest!!

xoxo- Chrissy