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!!

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...

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!

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!!

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.

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!!!

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!!