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!!