The Warwicks

2011-01-05T09:03:00.001-08:00

I was with jack through the night and here today. He had a pretty good night. He coughed every hour which made the oxygen machine go off because he dropped below 85%, but he never woke up and he would recover when I changed his position in the bed.

This morning was a little more involved. I couldn't get him to sit still, so the machine would go off all the time. He is still coughing this morning...but they say that is just the course of the virus.

During rounds this morning the doctors said we can leave!!! Yeah, we get to go home!! We are waiting to see Dr. Pearce and get our plan for follow-ups, but that is fine with me as long as we get to leave.

Thank you to everyone for all your prayers and support. Now, a new challenge begins...keeping jack and Evie away from each other so neither one gets sick. Jack needs to heal completely so his body can fight off all of these things.

2011-01-04T11:36:00.001-08:00

Brian stayed with Jack last night, so I don't have all the details. But I do know he had a pretty uneventful night except for the O2 machine going off all night because jack changed positions or the probe got pulled or the nasal cannula came out of his nose. This morning when the doctors did their rounds they said Jack to remain above 85% on no supportive oxygen for 24 hours. I am determined to see this happen so we can go home tomorrow. The problem is Jack loves to play with his trains all over the floor, which causes his levels to drop. Because of the hole left in his heart after his open heart surgery his levels are naturally going to drop when he moves, coughs, holds his breath, or anything. So, keeping his levels up is almost impossible!

So here we sit with Jack off oxygen and at 88%.

Long day

2011-01-04T05:51:00.000-08:00

Last night was a hard night (1/2/11) for me at the hospital with Jack. We got to our room on the 5th tower at Children's Hospital in Birmingham around 6pm...after being in the ER since 11am. One thing that is good to know, Jack gets taken right back because of his history and recent open heart surgery at the ER so we did not have to wait at all. He was able to stay on the nasal cannula last night, but his cough was terrible. Every time he coughed, he would react like an addict going through withdrawal. He would scream, kick his arms and kegs against the bed, and hit the crib sides. It was awful!! After a couple hours of this, I just broke down. I felt completely helpless to my own child. Was he just in pain? Did he just not want to be in another hospital? I hated that I didn't know what was going on with him. He would,however, fall back to sleep after each "fit". Sometimes it only happened once a hour and other times it happen 4 times a hour. It was just a really long night for me...and him. If he wasn't coughing and getting upset, his oximeter would go off due to low oxygen levels. I remember counting down each hour until it was morning and telling myself tomorrow will be a better day.

The morning (1/3/11) consisted of alot of tests and blood work. Every time someone walked into the room, Jack would start yelling, saying "leave me alone, please!" It was so hard. I am a medical professional and know how important each test was, but as a mother I just wanted to wrap Jack up and run out off the hospital. The cardiac echo confirmed that nothing "heart related" is going on and that it had to be lung related. The cardiologist did say that his ventricle is still pumping low-normal. (which I hate!! I want this one ventricle to last forever) but a call later from Dr. Pearce said that the ventricle looked "a little" better then it did at his check-up on the 20th of December. The cardiologist did allow his O2 levels to be as low as 85. Which was great because after he woke up he had to be moved from the nasal cannula to the mask (with 6L support) because he could not keep his O2 above 90%. With the new range at 85%, jack even went 3 hours on just room air before he had to put the nasal cannula back in with .5L support, which he is currently still on. After the results came back from the viral testing it was conformed that Jack has RSV. So, now we ride it out... He will have to stay in the hospital until he can come off the oxygen.

The poor boy laid around all morning like someone had druged him...he looked so bad. But when Brian came to take over tonight at around 7, he was out of the bed for the first time and playing with his trains and tracks.

Brian just called to give an update, and they need Jack to have more urine output. The nurse keeps telling us that Jack is cutting it really close. Please pray that he starts drinking more and has more output because I don't want any IVs. I just want to go home!!! I have had my fix with hospitals. I sat up at 4am reading posts from "heart" blogs that I follow, and I tried to gain strengthen from these amazing families that are going through so much more then we are. This path is not one that I would wish on anyone, and there are so many days that I want to throw in the towel...but God has blessed me with this little boy. And I want to make the best ot if...for however long I have him!!!

Here is a really bad picture I took of Jack laying on me in his bed tonight.

2011-01-02T18:28:00.001-08:00

I haven't even had time to upload the pictures on the camera from Christmas to show everyone. But need to update that Jack is back in the hospital. Two days ago he started coughing...something Evie has been doing for awhile. Last night Jack ran a temperature of 102 and his oxygen dropped to 81%. Brian and I packed a bag for the ER, but talked to the cardiologist on call and we decided to wait until the morning (who wants to go to the ER at night...on a holiday weekend). So after a very restless night for everyone, Jack got up around 8. When I checked his oxygen it was down to 77%. I made another call to the cardiologist on call, who told us to come to Children's Hospital ER. And here we still are, except in a room under observation. They do not know why his O2 is so low. It took all day, one negative flu test, and an X-ray that showed a little fluid on his lungs (probably still from surgery but nothing significant) for his O2 to be 90% on a nasal cannula. Tomorrow they are going to test him for several respiratory viruses and possible an echo. I am hoping and praying that they figure out what is going on and that we get to go home tomorrow!! I am so very sick of hospitals!! I know Jack is too. I hate seeing him so miserable!!

Looking back...

2010-12-20T08:27:00.000-08:00

I have uploaded some pictures that we took while on our adventure to Boston for Jack's open heart surgery. It is a review of our experience. Some of the picture show off the handy work of the skilled surgeons, so be aware. It is amazing to look back and remember...both good and bad from our experience. It was a trying time for our family, but we came out of it on the other side!! I can not thank everyone so much for all the prayers and notes of encouragement!! I truly believe that it got Brian and I through this time. Jack is an amazing, strong, and brave little man. He is such a trooper!!

Jack on the plane watching Toy Story as we fly to Boston.

Jack checking out the bathroom on the plane.

Jack in my lap while flying on the plane.

Jack before his heart cath.

He was a little scared...but did great!

We took Jack to the aquarium...he loved seeing "nemo".

It was a great day as a family!! (we missed Evie, though)

The night before surgery.

Scar free for the last time...

The dancing...

In the CICU, on Dec. 6th, right after surgery.

Breathing tube gone!!

Playing with woody

Standing up for the first time, Dec. 10th

Chest tubes gone...and playing in the play room.

Time to go home...

Jack with his "mended" little heart

Ready to go

Jack loved all the stickers he got after every procedure. It got us through each one.

It is hard to believe it has been two weeks since the surgical team took Jack from Brian and I to have open heart surgery. It seems like yesterday, but at the same time it seems like so long ago. Brian thinks that Jack is getting more oxygen to his brain because he is talking like a 5 year old...very complex thoughts...:)

2010-12-16T19:44:00.001-08:00

We are home! Both kids are asleep in there beds...I don't know if it will last, but it is nice for now!! Brian and I ate dinner and are hanging out watching TV with just the two of us.

We have a follow-up appointment with cardiology at UAB on Monday at 1:00. I am hoping that we will get off some medicine. Jack takes lasix twice a day, blood pressure medicine once a day, potassium medicine because of the lasix twice a day, and a baby aspirin once a day.

2010-12-15T18:50:00.001-08:00

Our adventure is almost over. We head home tomorrow. The plane leaves at 10am. We head to Atlanta to pick up our car and Miss Evie and then drive to Birmingham. Jack has has a pretty good day. He hates taking all of his medicine, but does it anyway. I think he just needs a normal life back...don't we all!!

2010-12-14T13:14:00.001-08:00

We have left the hospital!!! Jack is free to boy!! He is now a boy with a perfect mended heart with some extra hardware on the side. And we are hoping that we never have to return to children's hospital Boston. But if we do, we know we will be well taken care of!!

2010-12-14T09:10:00.001-08:00

My mind is more at ease. We had a talk with Dr. Breitbart about the pacemaker weakening his one ventricle and he said that he did not have the statistics in front of him but Jack's need or not need for a heart transplant would not be because of the pacemaker. The ventricle might become less efficient or it might not. Only time will tell.

Best news!!!

2010-12-13T19:45:00.000-08:00

After talking with Dr. Breitbart, the cardiologist, and the nurse practitioner late today, we were told the best thing we have heard since Jack made it through his open heart surgery...we get to leave the hospital tomorrow!!!! YEAH!!! I am so ready to leave, and I know Jack is ready. All night last night he kept saying "I want to go home". Now, if I can only get the poor kid to understand that we are going to stay with our family friends for two nights here in Boston before flying back to Atlanta to get Evie and then to Birmingham. We want to stay some days to just make sure everything is good.

Tomorrow we have another x-ray to check for fluid in his chest and lungs and blood work. But as long as both look good we can walk out the doors. We will meet with EP (pacemaker people) one more time, too. We are a little discouraged about Jack's pacemaker. On Friday the pacemaker was set to watch his own rhythm and pick up if his ventricle doesn't beat. Well, as of today his ratio is 2:1 (for every 2 beats of his atrium, he is only pumping his ventricle once) so they had to set his pacemaker to beat his ventricle every time. So, in other words he is continuously being paced. In any other kid, this would not be a bad thing, but Jack only has one ventricle and this constant pacing is not good on the longevity of his one ventricle. We need this one ventricle to last the rest of his life, in order for him to avoid a heart transplant, and if the pacemaker weakens this ventricle it might cause us to have a transplant sooner rather then later.

So, because of the pace maker, Jack will not suffer a stroke due to a irregular heart beat, which has always been a huge fear for me. But the pace maker could cause Jack to need a new heart...and after our time here at the hospital, I just don't wish that on anyone!! I sit day after day while here in his room and walking the halls of the 8th floor, and I see all these kids and adults who are just waiting...waiting on a second chance at life, and it is so depressing and sad. All of these people deserve that chance...the chance to live without having tubes keep them alive. I know that Jack is special...and I know that I have to let his heart and his life go and just live each day. His life is in God's hands! It is just hard to let him go sometimes. I am a fixer and a planner and I can't do either for Jack. I am having a hard time dealing with that.

Jack has had a pretty good day. We played a lot in the play room. He met a lot of great friends...and loved the train set that they have in the play room. We also found a trike that Jack just loved riding on around the halls. I don't think I have seen him smile this much since before surgery.

Mail for Jack..

2010-12-13T19:10:00.000-08:00

Jack received some mail today...he was so excited. I just hate that I did not get a picture of his face when he first opened the card from his Bell Center class. He got the biggest grin on his face. It made my day!! Thanks, BC family!!!

Good news!!

2010-12-12T13:35:00.000-08:00

Look:

NO TUBES!!!

Through the night, Jack's chest tubes did not drain but 6cc all night, so we got the best news this morning. The tubes get to come out!! He is so much happier to now be able to move around without tubes. But he is very wobbly. He wants to walk, but he can hardly stand. He is being a little demanding, but I guess I would too. He is happy as long as he is being pushed around in the go cart...not so happy in his bed.

My cousin lives in New York. This is a picture that he just sent me:

Thanks, Adam!! Jack is representing in Central Park.

2010-12-11T19:03:00.001-08:00

Great news...Jack finally pooped!!! Way to go kiddo!! Now, if these tubes would stop draining, we would be in business!!

Is this day over yet?

2010-12-11T16:51:00.000-08:00

Wow, it has been a long day! I feel like the room is getting smaller, too. Our new suite mate has left for home, and yet we still sit. Jack is starting to loose it...and so am I. I feel, at times, if I hear the word "no" one more time I am going to scream.

So, it looks as though the chest tubes are not coming out tomorrow...hopefully Monday. He did get out the external pacer wires and the IV in his hand. So, all we have are the chest tubes. He still has not pooped, despite getting every pooping drug out there. Not much has changed from earlier.

It is Brian's turn to stay with Jack tonight, so I at least get some sleep.

I ran into the sweet baby's mama that got the heart, and she said that he is doing great! His breathing tube and one chest tube is gone. His mom did say that we they removed his old heart it was so deteriorated that he could of had an aneurysm at any moment. He is one lucky little boy!! I told mom that all of you guys are praying for them and she was so touched!!

Some new pics from today! He got a Thomas the train toy from the playroom.

Today's update

2010-12-11T15:59:00.000-08:00

Jack had an eventful morning, but a very peaceful afternoon. His chest x-ray from this morning looks "beautiful" said Dr. Breitbart but he is still draining so the chest tubes have to stay in---stink!!!! He said that maybe the chest tubes could come out on Sunday, which puts us further in the week before we can come home. Jack did get his IV removed from his foot--so when he wakes up he can finally stand up and walk around--I am very excited about this. Jack still has an IV in his hand. Because all the fluid is draining off his lungs, Jack's O2 is so much better and he is able to get off the nasal cannula. Bye-bye one more tube!!

So, to date we are on blood pressure meds, lasix, and some other diuretic. He is also taking miralax, because he has not pooped yet...but I am hoping that walking around will help with this, and some pain meds...

We are moving in the right direction...just slower then i would like. :)

Jack's first ride

2010-12-10T13:29:00.000-08:00

Late yesterday, after his very long day, we got to put Jack in a go cart and walk around the unit. I took a pic with my iphone. I know he looks mad, but it was because I took the picture and made him stop moving around.

of course nemo, buzz and woody had to come along for the ride. I don't think you can really see it in the picture, but we also had to bring a thomas the train balloon (which is as big as Jack--thanks to Brian for the purchase of the huge balloon).

HUGE NEWS!!!

2010-12-10T06:14:00.000-08:00

Something amazing happened last night. This step down cardiac unit can be very depressing. There are just so many sick babies, kids, and adults just waiting...most waiting for a heart transplant. I can not imagine just how that feeling must be...just sitting and waiting for another life to pass, so your kid can get a heart and live. But last night, the most amazing thing happened that even words can not begin to explain it. Our suite mate, the little boy who needs a heart, got the call!!! He got his heart!!! They got the news at 11:00pm and he went into surgery at 6:00am this morning. I get chills just thinking about it again. I am just so very happy for this sweet little man and his family. Please lift this family up in your prayers that the surgery goes perfectly and his body loves ands excepts his new heart.

Just another day on the step down unit...

2010-12-09T13:12:00.000-08:00

It has been a long day at the step down unit. Jack had a lot of poking and prodding--blood drawn for levels, more medicine through IV, and medicine he is suppose to take by mouth. Tell me this...why do they make medicine so nasty and then tell a toddler to take by mouth. It is called flavor...and no putting it in apple juice does not make it easier.

Jack's oxygen kept going down throughout the night and into this morning (down to 80% with 2L of O2). The docs kept saying it was the pain and fluid...but after some chest x-rays, it was determined that his right chest tube had a blood clot in it. The nurses did some messaging of the tube and got the clot to break up and now he is draining like crazy. His oxygen has gone up to 90% on .5L of O2. His tummy was so descended before, is now coming back to normal. His weight is even better. He was up something like 3 pounds since surgery (which makes no sense because he is hardly consuming any fluids)...they are going to recheck his weight when he wakes up.

Poor guy tells everyone "no" or "not this" when they walk in the door now. If I ever thought he had a dislike for doctors and nurses before, well, he definitely does now. He is not up for talking much. But I am hoping that once all this fluid leaves his chest and belly, he will feel better. The doctors are saying that he should get the chest tubes, external pacing wires, and his dressing out tomorrow and we have a scheduled echo at noon on Monday. Dr. Breitbart said that we will be here at least a few days once the chest tubes come out. We are also waiting to hear if they want us in Boston for our first follow-up appointment or if we can do it in Birmingham.

Every time Brian or I get a little antsy about being here, we just look at our roommate or the other kiddos on the floor and see how blessed we are. Our little roommate is waiting on a heart transplant. He has TGA but a couple of hours after is corrective surgery when he was just days old he suffered a massive stroke in his carotid artery that should have killed him but instead he lived. However, the stroke has caused so much damage to his heart that it is no longer working for him and he is here waiting for a new one. It is hard to feel sorry for yourself, when I know we get to go home next week...and this guy might be here for who knows how long.

Pics of Jack

2010-12-08T13:24:00.000-08:00

These are two pics of Jack taken right before we left the CICU. He had just been given some morphine so he was making faces with nemo. This picture was taken with Brian's iphone. We have our camera and have been taking pics, but of course we left our cord at home so we can not transfer any pics from the camera to our computer.

He now has a nasal cannula because he is congested and still doesn't really want to cough hard. They also want me to do some chest PT on him...ok guys, if you only knew how long ago that was--about as long as it has been for me reading all these EKG strips. But I will dust off my skills and start beating away. The nurse gave Jack some Oxycodone along with his motrin and he has been out for the count. His O2 with the nasal cannula is resting right at 90%.

2010-12-08T10:54:00.001-08:00

Jack has officially been moved to the step down unit. He is so much happier with less wires and tubes attached to him...well, and the extra dose of morphine, too. After he got the morphine, the old jack came back. Asking for water to drink and talking about Thomas the train, nemo, woody and buzz. He told me that "sissy can't play with nemo. She plays with the alien" (the alien toy from toy story). He was so cute, and actually smiled. The CICU nurse asked if we needed anything...and I asked if they could keep giving him morphine because I like him happy. They laughed. I think it showed everyone just how much pain he was in..poor kid!! He is now resting in his new home away from home.

Post-Op day 3 and counting...

2010-12-08T07:13:00.000-08:00

Jack has recovered great from yesterdays unexpected trip to the OR. Brian stayed with him last night in the CICU, because he can sleep through anything (even though he only slept a couple of hours). I went back to the hotel and got some rest. Jack did good through the night. He is in a lot more discomfort right now and wants to be picked up. I got to his bedside at 6:30 am to trade off with Brian, so he can go get some sleep and do some work. Right after I got here, the team had to give him some plasma because his clotting factors were low from being on the bypass machine. He has some congestion in his lungs, but they are ok with it. He needs to cough, and does at times, but it hurts him. He is stating in the low 80s, which I don't like, but they don't seem to concerned about it. The plan for today (as of right now) is to take out all of his lines except his drainage tubes in his chest and IV line for fluids and transport him to the step down unit. Poor kid is finally resting right now but is just miserable. He is not really into drinking...I just think he feels crummy!

I am hopeful that things will keep going in the right direction. Of course, I analyze all of his data on the computers and I ask questions every time, but everyone says it is all the way it is suppose to be for now. So, I try to turn my brain off from what I know and relax. Easier said then done.

2010-12-07T12:13:00.001-08:00

When we got back to the CICU to see Jack, they had already taken out the breathing tube. Now, they just want to see more urine output. They have started him on lasix...pray for pee :).

2010-12-07T10:08:00.001-08:00

Ok. The surgeon just came out. They found the sponge and it is now out of Jack!! They were able to get it out without opening the ribs. He is going to recovery and hoping to get the tube out before making it up to the CICU room.

Hoping and praying this does not set Jack back too far!!

last night...and some unexpected things

2010-12-07T09:21:00.000-08:00

Jack really did great last night. He ran a temp of 102 around 9pm that made him a little agitated, but other then that he did good. His internal pacemaker had some problems so they had to pace his atrium with an external pacemaker and let his internal pacer pace his ventricle. After these adjustments were made and his fever started going down, he slept very peacefully. He started pulling out tubes around 2 am so the cardiologist decided to extubate him, so at 2:30am his breathing tube was officially removed. YEAH!! This made Jack so very happy. The nurse told us that he could not have anything to drink for 4 hours after the tube was removed (those of you that know Jack well know that he loves his juice). Lucky, he slept almost the whole 4 hours. He woke up at 6:30 this morning asking for juice. The nurse wanted to only give him sips at a time, and Jack would grab the juice cup from her and keep drinking. We all felt so bad having to limit his juice, but we did not want him to throw up.

An unexpected turn happened at around 9:30am when the surgeon came by to take a look at Jack and review his post-op x-rays. He noticed something odd on the x-ray. After more films where taken and a lot of other doctors reviewing the films, it was concluded that they think they left a sponge in his abdominal cavity. So, our whirlwind began...Everyone saying "sorry", "this has never happened here", and things like that. So, poor, sweet Jack is currently being put back under with a tube being placed so the doctors can open him back up to see if, in fact, they left a sponge inside him. The surgeon is just beside himself and said that the counts in the OR accounted for every sponge, so he doesn't know how this could have happened.

A friend sent me this verse: "This is the only thing I could think of right now:
"Hear my cry, O God; attend to my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed; lead me to the rock that is higher than I." Psalm 61:1

this verse sums it up right now!! I am not mad or angry. I just hate that Jack is having to have a tube placed again and we are looking at about a 6 hour set back. I am just sick for him!!! All of this came after the cardiologist said Jack was doing "spectacular"....

So, here we are again...waiting in the the surgery waiting area...Please pray that they find this sponge and get it out quick so they can get the tube out before bringing him back up to the floor.

2010-12-06T17:10:00.001-08:00

We got to finally see Jack at around 4:45 today. It was so hard to see him lying there with all the tubes, but at the same time it was so nice to finally see him after this long day! He is doing great, really. He keeps trying to wake up and they give him some more medicine to keep him sleepy. The hard part is seeing him wake up and try to cry out and can't. All of his levels look really good. It is just a waiting game now.

Thank you, everyone, for all of your sweet notes, thoughts and especially prayers!! Brian and I would not have made it through today without them!!

2010-12-06T11:46:00.001-08:00

It is over!! He is being taken up to the CICU now. The surgeon said the pacer wires took a little longer to place then he had thought but everything else went good. Now, we have to wait an hour before we can see him...

2010-12-06T09:57:00.001-08:00

Jack is off bypass!!! I am so happy! The doctors are now placing the pacer wires, now. Then, the doctor will come out and talk with us.

2010-12-06T08:50:00.001-08:00

Another update: nurse just said they are warming jack up in preparation for taking him off bypass. Then they will place the pacemaker. She said he is doing well.

2010-12-06T07:27:00.001-08:00

Another update from the nurse: jack is doing fine. He is now on bypass...and the surgery is beginning.

2010-12-06T06:21:00.001-08:00

Just made the incision. Jack will now forever have a "cool" scar to show his friends. I'm hoping it works as well for him as it has for Shawn White.

Jack dressed a ready

2010-12-06T05:51:00.000-08:00

This is a picture of Jack before going back to have his heart surgery. Poor guy...he had no idea what is about to happen. He was dressed for the part, though. He had on his thomas the train pjs, nemo, woody doll, buzz and woody mini notebook, crayon (red is his favorite right now), buzz lightyear blanket, and car house shoes. Oh, and don't forget his "cowboy" hat.

2010-12-06T04:57:00.001-08:00

The nurse liaison will give us messages throughout the surgery. It was so hard to let them take him, but he is in the best hands!!

2010-12-06T04:54:00.001-08:00

They just took him back...along with nemo and woody.

2010-12-05T19:31:00.001-08:00

Brian, my dad, my aunt and I took Jack to the aquarium today! It was such a great day away from the hospital and doctors!! He had the best time! His favorite fish was the nemo fish. He liked the shark from a distance, but not up close. Now, we are trying to get a toddler to go to sleep, but he is running around the hotel room like it is 2 in the afternoon :).

2010-12-03T11:44:00.001-08:00

He is finally awake! And we do get to leave the hospital today. He had several desats to the 40s and needed some puffs of oxygen. He woke up asking for juice, buzz and woody, and Alvin and the cimpmunks on the DVD player. That's my boy :).

2010-12-03T08:48:00.001-08:00

Jack is back to the room sound asleep. The doctors said he did great. He did not suffer any heart block during the procedure (praise God-huge answer to prayer), but he did have some low heart rate down to the 40s. Dr. Breitbart did say they closed off one collateral vein, but that everything looked pretty good. He is going to talk with dr. Mayer (surgeon) and come back and give us more details later today. He said that jack should be able to leave the hospital today ad long as he wakes up ok and does well.

So far, things could not be going any better!! Keep up the prayers!! I have felt such a peace...thank you!

2010-12-03T07:09:00.003-08:00

Jack is out of surgery for his heart cath. Nurse said he did great, but we do not know any details. I will update when we know something.

2010-12-03T07:09:00.001-08:00

Jack is out of surgery for his heart cath. Nurse said he did great, but we do not know any details. I will update when we know something.

2010-12-03T05:22:00.001-08:00

Jack is back for his heart cath. He was not happy to see any doctors and nurses this morning. But once they gave him the sleepy medicine, he was so much better. They are having to place two cath lines, one on each leg in case he goes into complete heart block and they have to temporary pace him until his big surgery. We are praying that this doesn't happen!!

tomorrow and heart cath

2010-12-02T15:41:00.000-08:00

We are to be back at the hospital at 7 am. The heart cath should take 2-3 hours. After the cath he has to be still for 4-6 hours. Now, how do you keep a toddler still for that long...I hope we have some great nurses. We might have to spend the night if the doctors have to preform any procedures during the cath...but if they do not then we might get to leave the hospital that night. I am hoping that we get to leave the hospital.

Thank you so much for all your prayers and thoughts!! They were truly felt all day long!!

done with the hospital for today and information

2010-12-02T15:37:00.000-08:00

Jack did great!! He was better then I could have every asked for. We arrived at the hospital at 7:30am and did not leave until 4:30. Wow, what a long day. It was filled with talking to every team member that will be taking care of him (anastesia, cardilogist, CICU team, pacemaker specialist/cardioloigst I got to hold a pacemaker in my hand...technology is amazing!! We did learn today that because of his Fontan procedure, he will always have to have his pacemaker in his abdominal. So, the original thought of it being moved up to his clavicle area can not happen because of his soon to be corrective anatomy. Dr. Brietbart showed us exactly the procedure he was going to do on Monday.

Before I explain...imagine this image switched with the left side being on the right and the right side being on the left (which is Jack's defect L-TGA with double inlet single ventricle and pulmonary stenosis). So, the Fontan consists of stitching the superior vena cava and inferior vena cava through the anatomical right atrium (R.A. in this picture, L.A. in jack), making an artificial wall to make a chamber and leaving a small hole for pressure to not build up, and cutting the pulmonary artery away from the hear itself. The small hole is likely to close up on its own as the body learns to function with the new O2 stats. If it does not close up within a year, they will go back in and close it. It is really fascinating when you stop and look at it. It is truly amazing how far modern medicine has come.

2010-12-02T09:13:00.001-08:00

HR is 61, O2 is 94 (best ever). Jack was not showing signs of any heart block when the EKG was performed. Cardiac echo finished. Now just waiting to talk with the docs about the heart cath tomorrow. Looks like we are going to have to stay over night at the hospital after the cath tomorrow. He is doing great!! Just flying buzz and woody all over :).

At Boston children's hospital...

2010-12-02T06:35:00.000-08:00

As most of you know my son, Jack was born with a congenital heart defect called L-TGA, a large VSD, pulmonary stenosis and double inlet single ventricle. Jack has been a miracle since birth and skipped every surgery up to this point. On, November 5th we went to the cardiologist for our 6 month check-up and after all testing was finished, it was discovered that Jack's heart is in 2nd degree (with some 3rd degree spikes) heart block. The cardiologist said jack needs a pacemaker...our world was turned upside down again. We always knew that this day could happen but it hit us like a tons of bricks. So, over the last several weeks we have been to many doctor appointments and jack has worn a heart holter. After talking with the cardiologist up in Boston, a date for surgery has been set. We are currently at children's hospital of Boston. Jack is scheduled for a cardiac echo today, a heart cath tomorrow, and his BIG corrective open heart surgery (the Glen-Fontan procedure) and pacemaker placed on Monday. I plan on posting updates as we have them. I am so very scared, and afraid about the surgery and about jack's further!! We have been so blessed to be a heart family, but in a distance because he has been so stable up until now.

2010-12-02T05:33:00.001-08:00

Text try to see if it will update my blog

Photo Shoot with Chrisit Colvin at Ross Bridge

2010-11-29T06:50:00.000-08:00

It was beautiful fall afternoon, and we got to have fun as a family and have Christi take some pictures...right in our neighborhood.

Eight months later...

2010-11-28T21:54:00.000-08:00

So, it has been 8 months since my last blog post. Having two children sure does take all my spare time. I will try to recap quick. Evie is almost nine months old. She is the cutest, loudest little girl I have ever met :). She is crawling (has been since 6 months), pulling to stand (has been since 7 months), cruising furniture (has been since 7 months), standing independently (has been since early 8 months), walking with a push toy (has been good since 8.5 months), and taking 2 steps...WOW...what am I going to do with her. Jack thinks she hung the moon and she thinks he is the best, too. It is amazing watching the two of them. They just love each other so much. I of course and scared to death that she is going to get seriously hurt the way they play sometimes. I am really working with Jack on being gentle. I don't think he sees a baby when he looks at her. Evie is currently on 3 medications, two are for acid reflux that she takes 6 times a day and the third is an antibiotic that she takes because we found out 2 months ago that she has grade 3 reflux of her left kidney. We are scheduled to see a specialist in January. But other then all her medicines, she is so happy. I am learning very quickly how different raising a little girl is from a boy. She will give you about 2 minutes to meet her need...and then she yells...and very loudly. Jack never did this!! He was so laid back.

I have changed jobs. It has been a huge change for me. I just loved my old job at the The Bell Center. I loved everything about it, except it kept me from my own kids. I am now working part time, and I am able to spend more time with Jack and Evie. I am working for a company called pediatric associates, inc. I am still working with some in early intervention, but also doing some school systems. The flexibility is awesome.

Jack is great!! What a joy...and a tester at the same time. He loves buzz and woody and everything Toy Story. He goes everywhere is a houndstooth Bear Bryant hat that he calls his cowboy hat. I am going to write more about him in the next post. But for now...here are some great pics!!

Welcome to the World!!

2010-04-21T12:07:00.000-07:00

It has been a long time since I have posted. First our computers crashed and then time just got away from me. And then....Evie was born!! Yes, we are now a family of four!!

Welcome to the family, Evelyn Boyd Warwick "Evie"

Born March 7, 2010 at 3:45am weighting 9 pounds.

these are some pics from our newborn session with Becky Abernathy (the same photographer that took all of Jack's pics).

things have been crazy since becoming a family or 4. It is amazing how adding one little baby can change a family so much. I never knew how easy we had it with just Jack. We are learning a lot about ourselves. Since being in this world (6 weeks now) Evie has been put on medicine for acid reflux, a thicker formula due to the reflux and medicine for constipation. How is it that my child with a CHD never had any feeding issues and would eat any time a bottle was put in front of him, but my child who is completely health has every eating/pooping issue I know? Funny how things work!! I know that God will only give you what you can handle, but with the lack of sleep and trying to keep up with Jack at 21 months...there are days that I don't think I can handle it!

I, also, don't know if any other people with more then one child has experienced this but I am having a hard time sharing my love between two children. I don't know if it is because Jack has his heart defect and I feel an extra special attachment to him and his precious life or because Evie is in the "lump" stage (as one of my friends calls the newborn stage), but it is hard for me right now. I hope that doesn't make me a terrible person. She did finally smile yesterday, and that helps melt my heart!!!

Well, I have a lot more to report on, but I have to go to sleep since she will be up in a couple of hours. I promise to update again...and not wait a couple of months.

Playdate

2009-10-18T08:00:00.000-07:00

Jack and I went over to my little sis from Samford's house to have a playdate with her adorable twin boys, Will and Logan. We had so much fun. Jack wanted to sit by them and lay on them...Terra and I even got to talk some.

This is a great pic that Terra got of the boys. The boys poised themselves. Jack went right over and sat between (or right on) the boys.

Blog Change and big news

2009-10-18T07:53:00.000-07:00

Well, I have finally changed over my blog from mac to blogger. Even though I do not understand blogger yet and it is not as easy to me as the one I had on mac, I know it is time to change. Baby number two is due in March and a blog just for Jack would not be fair for our new little one. We found out last week we are having a girl... Bring on the pink!! Our due date is March 16, but she is already measuring a little bigger, so we will see. Everything has gone great so far. It has been a hard pregnancy on me, not physically but emotionally. I have been really worried about the development of this new baby. I wonder if I can have "healthy" children. I am less worried about another child with a heart defect and more worried about everything else...at least I know and understand a heart defect. I have done a lot of praying and I am trying to give my worry over the God, but it is so hard. Our first sonogram looked great, and we have a fetal echo in November.

Now, we just have to come up with a name...we had been calling her "Jack, jr." until we found out she was a she...so I don't know now.

Watch me Grow...finale session

2009-09-28T17:24:00.000-07:00

Our finale photo session with Becky Abnernathy was early this month. This was the last of the three sessions . We decided we wanted to be outside, so we went to Linn Park and Morris Ave. We have not seen all the pics yet, but Becky has given us a sneak peak at some. So, enjoy!!!

Labor Day Trip to the Beach

2009-09-28T17:08:00.000-07:00

September 7, 2009

Again this year we went to Sullivan's Island for Labor Day. My aunt, uncle, dad, my dad's wife, my sister and brother-in-law, and my aunt's sister. We had such a great time and the weather was awesome. Jack got in the pool a lot with my aunt...he loved it. He loved wearing everybody's hat and playing with Maggie, my cousin's dog.

Here are some pics from the trip...

Uncle Todd throwing Jack up in the air

Family picture wearing Sullivan's Island t-shirts

Jack had never listened to music through headphones, so Uncle Ed decided to give it a try. Jack LOVED it and would not take them off for a really long time. I guess it is time to buy him his own ipod.

Jack relaxing with Brian

Jack wearing Aunt Su- su's hat

Jack with Aunt Ashley

Jack loving on Maggie

Jack loving the pool

Jack is his SI t-shirt

Mowing the lawn

2009-09-28T17:04:00.001-07:00

August 10, 2009

Brian decided to let Jack help him mow the lawn...and he got very excited!!!

Saying bye to our babysitter

2009-09-28T16:42:00.000-07:00

July 30, 2009

Jack's second nanny, who he has had since December '08 is finally leaving us. We are very sad to see her go, but excited that Jack is able to attend Hand in Hand Early Learning Program. I had to get one last picture of the two of them before she left.

Thank you, K, for all you did for us and especially for Jack these past 7 months!!

Ready for Football session

2009-09-28T16:22:00.000-07:00

July 26, 2009

Brian took Jack to T-town for some father and son fun, and he bought him a jersey. Jack is officially ready for AL football....ROLL TIDE!!

Watch out John McEnroe

2009-09-28T16:02:00.000-07:00

July 5, 2009

For Wimbeldon Men's Finals this year we had a "breakfast at Wimbeldon" party with our friends, the Kizzires. So, we thought it was only appropriate to add some sweatbands to Jack's outfit. He was so funny.

Watch out John McEnroe....

Picture of the Day!!

2009-09-28T15:52:00.000-07:00

June 28, 2009

One of Jack's birthday gifts was a ride/push toy. He loves it!! Here he is posing in front of it.

Jack turns ONE!!

2009-09-27T19:34:00.000-07:00

June 27, 2009

We made it to one year. I can not believe it. It seems like yesterday when we where in the NICU wondering what are future, or Jack's future, held. But here we are, one year later and no open heart surgeries yet. ;) I am amazed everyday at my son. He lives each day to the fullest and has taught me to do the same thing. I know this next year will probably bring more doctor appointment, another trip to Boston, and possible heart correction. But for now, we are enjoying that he is healthy and thanking God everyday for the miracle he has given us.

For his birthday, we just had family and a few friends up to the pool for a pool party. I have a feeling that Jack will be having pool parties until he can tell me something else he would rather do.

Here is Jack wearing his birthday hat...

One happy Family!!!

Jack loving his cake!!

Bad hair day

2009-09-27T19:23:00.000-07:00

May 31, 2009

As Jack's hair grows...so do the number of "crazy" hair days. I think he needs a trim, but Brian and I are afraid that his hair will loose his curls...

Before nap

And after nap...

Trip to Flordia

2009-09-27T19:07:00.000-07:00

March '09

In March, Jack and I went with my sister to Fort Lauderdale, FL to see my aunt and my grandfather. I was so excited for Jack to get to meet his great grandfather. It is so important for me for him to learn about my mom's side of the family. He had a blast throwing him balls and sitting with him. Thank you, Aunt Aloha, for a great trip!!

Happy Mother's Day

2009-09-25T12:38:00.000-07:00

Friday, May 11, 2009

One of the many things that Brian did for me for Mother’s Day was he entered a contest put on by Becky Abernathy, our photographer. She asked everyone to post on her blog “about how your wife that makes her the best mom ever”...and yes, he WON!!!! I thought I would share what he wrote because it touched my heart...

Heather has always been a caring woman, as evidenced by her love for her job working with children with special needs. But it wasn't until we had our beautiful son, Jack, with his own set of special needs, that I was able to witness up close my wife's unending love for children, and particularly for Jack. During Heather's pregnancy and even when Jack was born, we had no reason to suspect that Jack suffered from any complications. However, not long after his birth we learned that, while he is a perfect little boy, he carries with him an imperfect heart. During this difficult time, Heather was a rock for me, exemplifying leadership in the household that I can only hope to one day repay. I love my wife for everything that she is... beautiful, caring, loving, patient, and strong. Happy Mother's Day!

The first Mother’s Day for me was awesome!! I loved hanging out with Brian and Jack. I am truly very blessed!!

Cardiologist Check-up

2009-09-25T11:19:00.001-07:00

Friday, May 1, 2009

We had a check-up at the cardiologist that could not have gone any better. This is the first check-up since Jack’s heart cath, and since he has really been moving. He is crawling everywhere (including up the stairs), pulling to stand, trying to stand not holding on, and cruising. I was very interested to see if Jack’s heart was showing any deterioration due to his increase in activity. Dr. Pearce was totally surprised to see no change in Jack’s scans and sats!! YEA!!! What a praise and answer to prayer!!! Dr. Pearce said that sometimes you can begin to see leaks from the tricuspid valve and pulmonary artery enlargement...Jack showed no signs of either. Dr. Pearce could not express how pleased he was in Jack’s growth and his lack of signs of any heart failure. This is almost unheard of in someone with Jack’s condition. We don’t have to go back for a scheduled cardiology appointment for 6 months!!! That is the longest that Jack has every gone without seeing any heart doctors!!!

Brian and I are so blessed by Jack’s health!!! Not a day goes by that I do not Thank God for the blessing He has given us!! Not a day goes by that I praise the fact that we are not in a hospital and Jack does not have any scars from surgery! I do know that one day the news is not going to be so good...but I will worry about that day when that day arrives. Today, I am just so blessed to have one of the healthiest heart babies around!!!

Jack's First Easter

2009-09-25T11:05:00.000-07:00

Wednesday, April 15, 2009

Jack had a great Easter!! He got all dressed up, thanks to Grandman and Gramma and we went to Easter service at Dawson Baptist church with my sister, brother-in-law and his parents. Jack did great at first in the service but started talking, so I took him out in the hall. While in the hall, the director of the children’s fellowship came up to me to see if Jack wanted to go to the nursery. I guess the look on my face answered the question before I could get the words out. I expressed my concerns and touched on his heart...She talked to me about there nursery program for a little bit and said that I could stay with him for awhile if I wanted. (Not wanting to look to bad) I went to the nursery class to check it out. There were only 2 other babies, and one of the three nursery workers that Sunday was a nurse. We got to talking and she was very familiar with Jack condition and promised me that she would make sure to only give him toys that had been cleaned. Reluctantly, I got my pager and left him in the nursery for the remainder of church. I did not hear anything for that 20 minutes...I just kept waiting for church to be over so I could go get him. I even left while everyone was singing to get him. The nursery workers said he had a blast!!!

After church we went over to Brian’s mom house to visit and let them see how cute Jack looked.

Photos from Becky Abernathy

2009-09-21T20:07:00.001-07:00

Tuesday, April 14, 2009

Before Jack was born we found Becky Abernathy, an amazing photographer in Birmingham. We decided on a package called “Watch Me Grow” where Becky comes out and takes pictures three times throughout Jack’s first year. We did the first session about 7 weeks old, and have just done our second session. We will do the last session sometime this summer after Jack is walking. She has provided me with some pics and I just have to share...brag...because Jack is the cutest kiddo ever!!!

All of these pictures where taken at our house:

First “Heart” Support Meeting

2009-09-21T19:59:00.000-07:00

Wednesday, April 8, 2009

Mended Little Hearts, a national organization, is a new support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope. Birmingham just got a chapter and they had there first meeting last week. Brian and I went to it. It was great to see the support of the families here in Birmingham. About 6 families showed up. We sat is a circle and shared our stories and discussed future outings and fund raising. Once again I was humbled by all the other families. Jack is the only child that has not experienced open heart surgery of some kind. That did not stop me from being the only person to cry during the meeting. I am just touched by all the things that these (and our child) children have to go through. No one, especially a child, should have to go through the day to day struggle that every “heart” baby has to go through. I also cried for all the kiddos I see at work on a daily basis...To watch the families live out a life they have never dreamed of just hits so close to home. I wish I could just blink and make it all go away!! I am so thankful for the support I have from new “heart” moms and especially the moms of the children I serve.

Photos from Tori Ryan at Sullivan’s Island

2009-09-21T19:49:00.000-07:00

Monday, April 6, 2009

Here are just a few pictures that where taken from Tori. She was amazing and we had such a great time with her. We can’t wait to use her again!!! We even got a great picture of Jack and Anna together.

Beach Time

2009-09-21T19:01:00.000-07:00

Sunday, April 5, 2009

Our family went to the beach, Sullivan’s Island, with some of our friends in March. We had three couples, two with kiddos, and a great friend all there together. We had a blast!! Jack and I flew with Karen and Anna, while our hubbies drove all of our stuff. I was very impressed how well Jack flew on the plane, especially when we went to doctor the day after we got back and he had a double ear infection and pneumonia...you would have never known it.

While we where at the beach, Karen found an amazing photographer, Tori Ryan, and we had some photos taken of Jack on the beach. Karen was getting Anna’s three year old pictures taken while at Sully’s. Tori was so great with the kids and took some awesome shoots. I can’t wait to share them with everyone...they will be up soon.

All in all the trip was great...besides Jack being sick. I don’t know if we scared our friends who don’t have children to have them or to stay away... :)

Here are some pics that we took...

Lighthouse at sunset on Sullivan’s Island:

Lighthouse after sunrise on Sullivan’s Island:

both are so pretty and makes you never want to leave the island!!!

Jen holding Jack.

Jack excited about the remote...

Jack trying to get Palmer’s face...

And we did not even get a group shot of everyone. Why do the pictures change when kids are around?

Trip to Nashville

2009-09-21T18:40:00.000-07:00

Monday, March 16, 2009

Jack and I went to Nashville over the weekend to visit one of my best friends in the world!! She has the cutest two year old, Wade, and is expecting her second boy next month. She is going to have her hands full!! :) We had so much fun together. Jack just loved watching Wade run around!! He would take a toy from Jack and say “mine,” and Jack would just look up at him and laugh. Jack would so love to be someone’s little brother!!! The boys entertained each other...it was awesome. I loved see them and just hanging out. Jack’s favorite part was taking baths with Wade in the big tub. Wade would just hug and kiss on him, and Jack would just laugh. Jack even did great on the drive up and back. I can’t wait to go back once Gavin gets here.

Can anyone say model?

2009-08-30T06:44:00.000-07:00

Monday, March 2, 2009

I got a new outfit in the mail...and wanted to see how it was going to look and fit...

Can a kid get any cuter? Does anyone need a model?

I think he is ready for his photo session next week.

Blizzard '09

2009-08-23T19:57:00.000-07:00

Sunday, March 1, 2009

We woke up to a winter storm this morning, and it is still coming down. It is so beautiful!! It is not often that we actually get snow in Alabama. But when we do, it is usually in March. It is so amazing to look out over the golf course and see endless sheets of white...

We took Jack out in the snow...he was not so sure what to think of it. He especially did not like the cold wind blowing in his face.

8 Months Old

2009-08-23T19:51:00.000-07:00

Friday, February 27, 2009

I can’t believe Jack is 8 months old. Wow, how time flies bye!! He is learning something new everyday it seems. He is has officially mastered sitting up...now if he could just get himself into sitting...He is rolling all over the place. He is trying to commando crawl and get into all 4’s. He will stand up while holding on to my hands. His new favorite game is playing ball (check out the new video it is so cute). At night, instead of just sleeping on his back, he is now rolling all over his bed (sometimes this is not a good thing because it wakes him up). He is sleeping on his side, stomach, or where ever he ends up. He is talking up a storm. He has mastered his b’s, d’s, and m’s...and he loves to squeal.

I love seeing and experiencing all the new changes!!

Where has February gone...

2009-08-23T19:43:00.000-07:00

Tuesday, February 17, 2009

I can not believe we are half way through February!! It has been a great month. Jack had his first cold, and he was just pitiful. He continues to grow and thrive...he is such a little ham. He is sitting (but will fall over at times), trying to master all 4’s and talking up a storm. He is officially a big boy because not only is he eating baby food, but we have moved on to puffs...He loves them and I am trying to get him to start signing more and finished. We work on “mamma and dadda” too, but he just laughs at me. It is so cute...I will put his hands together to sign more and he just smiles and opens his mouth. Well, at least he knows what is happening next. He is very much into the game of dropping things off the exersaucer while playing and trying to find and get them...oh the joys and excitement of gravity!!

I had a great birthday, just hanging out with Jack and having a great dinner with Brian later!! How quickly a child changes what defines a “great” birthday. Jack and I played all day and went to the park to swing. He just loves being outside...He just watches all the other kids. I has yet to really smile while at the park. He always has such a serious face when we go out there.

A new shop opened up in our neighborhood, so we love strolling up there for some chicken salad and/or ice cream!! Yum!! but really bad for the waist line!!

So far, February is turning out to be a great month!! My love for Jack grows everyday, and I just enjoy every minute I get to spend with him.

Trying to understand...

2009-08-23T19:42:00.000-07:00

Monday, February 2, 2009

I had a hard weekend, emotionally. I just don’t understand death of children. God brings children into the world...why take them out so early?

I reconnected to a high school friend at the end of last week through good ole facebook, and I found out that one of her twin boys died suddenly at Christmas with a brain tumor at 15 months. This sweet, innocent, and happy little boy had not shown any symptoms before his death and the family had no idea he had a tumor growing inside his little head. Just one morning he did not wake up...

Then, over the weekend a couple (friends of some friends) lost their 12 week old baby. The baby had been taking a nap and just did not wake up...apparently the baby aspirated in his sleep...

I found myself rocking Jack to sleep on Saturday and just crying. My heart goes out to these families...how can they go on? How do they explain these deaths to their other children, who are too young to even understand and remember their sibling/twin? I found myself wondering, How did I get so lucky that God has spared my son and taken these other ones? Jack has so much going on inside of him, and yet he continues to thrive each and everyday. These other children had their whole lives in front of them, yet it was cut way to short. I am so sorry to be a downer today, but I just had to share. This has really taken a lot out of me. My heart just aches for these families...

I know life is so precious...but it really hit home this weekend. So, enjoy everyday!!! Love your children everyday and be thankful for them everyday...because we just don’t know what tomorrow brings us...

Heart Cath

2009-08-23T19:31:00.000-07:00

Friday, January 23, 2009

Jack did great at the hospital today!! He was such a trooper. We woke him up at 5:20 am and made our way to UAB hospital. It took a little while to get admitted into our room for the day, but it was well worth the wait. When we finally got to our room it was well worth the wait...it was a deluxe suite...wonder how much that is going to cost us? It was amazing. It had basically two rooms...one was a bed room and the other a living room area with a huge sofa that folded out into a bed a table, and some chairs. There were two TVs, one for each room. I have never seen any hospital room like it.

Doctor McMahon came in to meet us and talk about the heart cath procedure. He went through the whole procedure from start to finish. He went over the risk factors again, and said that he rarely has them happen. He said the length of procedure would depend on how easy it is to navigate through Jack’ heart.

The whole family (Brian, my sister, Ashley, my dad and his wife, Nena, and myself) walked Jack to the double doors of the OR and handed him over to the nurse. It was so hard. Everyone was crying except Jack. He was so brave...much braver than me.

The doctor called us exactly 1 hour and 50 minutes from the time we handed him over to tell us he was in recovery, which was very quick because he told us to count on at least 2.5 hours. He said that Jack did great. There were no signs of any heart distress or heart blocks...praise the Lord!!! The doctor had said that a normal pulmonary artery pressure reading should be between 12-20 with 20 being a high normal and questionable. Jack’s pressure reading was 12-13. YEA!!!! The doctor was so impressed by all of Jack’s pressure readings. This means that his little imperfect heart is basically functioning as close to perfect as you can get. So, Jack does not need surgery right now...and we are going to just keep watching him as he grows and develops to see if he will have to have surgery around 2 years of age. We will have regular cardiology appointments with Dr. Pearce about every 2-3 months unless some signs start to show up. Every doctor and nurse that saw Jack the whole time we were at UAB kept commenting on how “big and pink” he is. I guess working on the cardiac floor, you don’t get many babies that look like Jack.

The 6 hour recovery was long, but Jack was great. He just played and talked to everyone. He was the champion of the day!!!

Thank you to everyone for all your thoughts and prayers!!! Brian and I felt lifted up the whole day. Please continue to pray that Jack will just keep growing and developing like he is and his heart will remain balanced!!

Here is a pic of Jack in his little gown...he is so cute even before the procedure..

Picture of the Day!!

2009-08-23T19:22:00.000-07:00

Tuesday, January 20, 2009

We had a great weekend...I love long weekends, and especially having Brian home an extra day to play. Jack went to his first birthday party for Anna, who turned 3. He had a blast watching and laughing at all the kiddos running around. Anna was too cute!! Her favorite gift was a red cowgirl hat.

One Monday, Brian, Jack and I went around to every Hobby Lobby in Birmingham trying to find some more frames. Brian and I spent the weekend finally hanging pictures on our walls. For those of you that know us well, know that we have not had pictures hung on walls since we first got married and where living in an apartment 4.5 years ago...We have just not stayed in a place long enough for me to bother. Our home here finally feels long term to me and I love looking around and seeing Jack everywhere. I know feel sorry for our second child!!

Decision Made

2009-08-23T19:20:00.000-07:00

Friday, January 16, 2009

After talking with every cardiologist we know...from Boston to UAB to Emory...Brian and I have decided to go ahead and do the hearth cath. It is scheduled for 6:00 am on Friday, January 23. I am glad to have the decision made, but I am very nervous about Jack having the procedure done. The risk factors terrify me...

The nurse called the other day to tell me about what to expect...I did a lot of “Ok”, “Uh, huh” and “that sounds good”. I was just trying to fight back all the tears while I was talking with her. When I got off the phone, I started crying. Of course I was in the car, and I turned right around and drove home..crying the whole way. I got home grabbed up Jack and held him and told him just how sorry I am. I am sorry for the pain he is not going to understand. I am sorry for the possible limitation all of this is going to cause him. I am sorry for how common all the doctors are going to be.

I am so scared for Jack. I think the worse part is knowing that this procedure is so minor compared to the ones he is going to have to face later. I am so nervous about the outcomes too. What if the pressure reading is not what they think it will be and he has to have surgery next month? I am not ready for the “clock” to start against his heart. I am not ready to know that he will need to have a heart transplant to live into adulthood. I look at him and he is so perfect and healthy...most days I forget about the mess on the inside. I am so blessed for the good health he does have now. I read about other children with similar issues and I know just how blessed we are, but it does not make it any easier.

So, start praying!!! Pray for Jack’s safety during and after the procedure. Pray for the surgeon’s hands...that he will not hit any conductive part of his heart to cause a pacemaker to be required. Pray that we do not have to stay overnight in the hospital. Pray that Jack is able to stay still for 6 hours after the procedure. Pray that Brian and I make it through without falling apart. Just PRAY!!!

2009-08-23T18:58:00.000-07:00

Sunday, January 4, 2009

Last year was a very exciting year for Brian and me...the birth of Jack was brought more joy to our lives then we could have imagined. As I look forward to 2009 I am filled with both excitement and hesitation. I am excited about all the things Jack is going to grow and do...crawling for the first time, walking, and turning one. I am scared, though, that he will have to have some kind of surgery and I am just not ready for that!!! I know I can not focus on the “what’s to come,” and I plan of living 2009 day by day!!!

Brian, Jack and I went over to our friends at Kizzire’s house to ring in the new year...well, Jack decided he did not want to miss out on the fun and woke up at 11:50...He saw the ball drop for the first time and got kisses from both Brian and me.

Update...

2009-08-23T18:52:00.000-07:00

Friday, January 2, 2009

Over Christmas a family friend of Brian’s stepfather came into town and requested Brian give him a call when we get back into town from Chile. His friend is a cardiologist at Emory who trained Dr. Pierce (our cardiologist at UAB) and still has a pediatric clinic but focuses on adults now. His name is Dr. McConnell. Brian talked to him on tuesday. He wants to see Jack, but based on what he has heard about how well he is doing he said he would not have any procedures done...not even a heart cath. His focus in heart defects is to do as little intervention as possible. He thinks that as long as Jack’s oxygen level is stable then there is no reason to have anything done.

The heart cath is scheduled for Jan. 23, but we really want to go over and see this doctor...so I might have to reschedule it for later or cancel altogether. We are interested in what this doctor has to say. He, so far, is the only doctor that looks at how procedures effect the lifespan of an individual.

I do like getting more opinions, but it is so hard to know who to trust and who to listen to. I went from not doing the cath, to doing the cath, to now not knowing what to do.

Pray that Brian and I can make the right decision for Jack.

Jack's First Christmas

2009-08-23T18:39:00.000-07:00

Friday, January 2, 2009

Brian and I went to Chile with my family for Christmas and Jack stayed with my dad and Nena. Before we left, we took Jack to see Santa on the 19th at the Mall of Georgia. He did great. He just sat there and stared at everyone trying to make him smile. Jack was great for Dad and Nena. He slept through the night and loved playing with all the other grandkids!!! He was there from Dec. 19 until early on the 29th. Brian and I missed him so much!!!

Before we left I bought him a Christmas outfit...

And we made time to get Jack's picture with Santa before we left for Chile.

Going to Church

2009-08-23T18:36:00.001-07:00

Monday, December 8, 2008

Yesterday was the first time we have been to church since Jack was born. It was so great to be able to go and “feel” like a normal family. We have not gone before now because the doctors told us to stay clear of the nursery and I didn’t like the idea of just Brian or me going. One of my great friends was singing a solo and I just could not miss it!! Since Jack can not go to child care, I sat in the back and held him. Jack did great. He listened, ate, and slept. He did better then I thought he was going to do. He is already teaching me not to doubt him. I got more emotional about being at church then I thought I would... In some way it reminded me how Jack is not like other babies. It is funny, but I wish I could put him in the nursery, get a pager and enjoy church... It is just one more thing to remind me that my son is not 100% healthy and it makes me sad and scared for the unknown...

My friend was amazing. She sang a Faith Hill song, A baby changes everything. It touch my soul...and I know it touched everyone in the sanctuary. God has truly blessed her with a gift...and she shared it with all in attendance yesterday.

Tough Decision

2009-08-23T18:28:00.000-07:00

Monday, December 8, 2008

Have I mentioned how bad I am at making decisions? I mean meaning little decisions like, what to eat, where to eat, what to wear...stuff like that. So, with that said, making a major decision about my son is becoming impossible!! Just when I thought I had everything with Jack under control and I was confident in my decision not to have the heart cath...I get this...

(this is the response from Dr. Breitbart to Brian about our questions/concerns with having the heart cath procedure)

...I am very glad to know that Jack is doing well. Let me clarify one point before I respond to your question about the risk:benefit ratio of catheterization. Hearts with so-called L-looped ventricles—ventricular inversion, i.e. left ventricle on the right side and right ventricle (or remnant thereof) on the left side—are at risk for developing permanent heart block spontaneously, as well as during catheterization or, indeed, surgery. This is because the heart’s conduction system (biological “wiring”) connecting the atria to the ventricles is abnormally formed and tenuous in these hearts, such that it fails in some cases (approximately 20% of such hearts). It is true that the conduction system may be temporarily or permanently disabled by minor if unavoidable catheter impact, but this is likely because of its intrinsic vulnerability in ventricular inversion rather than because of the particular catheter course.

Regarding your good question about the reasons to incur even the small risks of catheterization, the answer is that they are far outweighed by the risks of NOT doing so in children such as Jack with single-ventricle hearts. The ultimate success of the Glenn and/or Fontan surgery hinges on several key elements of cardiovascular physiology—particularly pulmonary vascular resistance and ventricular diastolic function (let me know if you want me to explain these)—which cannot be measured either by physical examination, echocardiography, or other non-invasive testing. Although these are probably OK in Jack, we cannot be certain of this without catheterization. If they are not OK, it is essential to know that sooner rather than later, because our ability to reverse such problems declines the longer they are left untreated. We would certainly prefer to have a completely risk-free method to determine this but, again, we believe the risk of not detecting and managing such problems is greater than the procedural risks of catheterization, including heart block...

WOW...so my child can just drop at any point with heart block...I love that I am just now finding out this information. After I read his email, I cried and then I got so frustrated. Just when I think I understand all there is to know about Jack’s heart, someone throws a curve ball at me and knocks me down. I don’t see how other families do it. I have a back ground in Human Anatomy and a huge understanding of how the body works, especially the heart...and I get so confused and mad at myself for not thinking of these things. I don’t like surprises...especially ones about Jack’s heart!! Brian and I just don’t know what to do. We have formulated so many questions to ask back to Dr. Breitbart and to Dr. Pearce. Not only do we have to re-decided whether to have the heart cath, now we have to decided to have it here at UAB or go ahead up to Boston in the off chance something happens.

Just when I think that nothing else can happen and I am finally moving forward, something like this happens. The worse part is I feel like it is only going to get harder as he gets older...

Five Months Old

2009-08-23T18:18:00.000-07:00

Tuesday, December 2, 2008

I can not believe it has been 5 months since Jack was born. So, much has happened...and I have to say that this month is my favorite to date!!! He is so much fun. He is trying to roll...all 18 pounds 9 ounces of him. He will roll from back to tummy...and has rolled from tummy to back once. He much prefers to sit with support or in the exersaucer to play. We have started some baby food. I am not as loyal about spoon feeding...I just hate messes so eating is not my favorite thing. Jack is not crazy about it, but what kiddo is at first? I think he is going to keep his blue eyes, which I am so excited about. And I think he is starting to look more like me...well, at least that is what some people say.

Health wise Jack is doing wonderful. He is still just as “stable” as he always has been. I don’t know what I am going to do when his little heart decides to start having problems. I am so use to every check up being so positive. We have not heard back from Dr. Brietbart, but as of right now we are not doing the heart cath in January. I am not willing to take the risk at this point.

For thanksgiving we drove down to Mobile to visit Brian’s dad and stepmom. We left after bath and nighttime bottle on tuesday and came back early morning on Thursday. Jack did great traveling...he slept almost the whole time each way. I was very proud of him. I have to admit I was not happy about making the drive with him, but he proved me wrong...yet again and did great. Way to go, son!!!

We are getting ready for our trip to Chile. Brian and I are so excited, but it is going to be very hard to leave Jack. He is off to stay with my dad and Nena. The worse part is we are going to miss out on Jack’s first Christmas. We leave on the 19th and don’t return until late on the 28th. Brian and I have decided that we are going to redo Christmas when we get back. The best part about Jack staying with Dad and Nena is he will be around tons of kids!! I am so thankful for Nena’s big family!!!

First Hand/Foot prints

2009-08-23T17:58:00.000-07:00

Sunday, November 16, 2008

I was given a gift card to get Jack’s hand and foot print made in clay from Do it Yourself Crafts. Brian and I took Jack to get these done. It was so much fun!! Julia did a great job. Of course we ended up getting a lot more than just his prints made. We made some Christmas ornaments, too.

Thank you, Julia!!!

Check-up at the Cardiologist

2009-08-23T15:59:00.000-07:00

Friday, November 7, 2008

We had a check up at UAB cardiology. Jack weighted in at almost 18 pounds and his oxygen was holding strong at 92%. Dr. Pearce could not get over how great Jack looked and how “balanced” his little body continues to be. He reviewed with us the dictation from Dr. Breitbart in Boston and we discussed the heart catheterization procedure. Dr. Pearce believes we can wait until January to have the procedure done. He also informed Brian and I of the risk factors associated with doing the heart catheterization. There is a 5% chance that Jack could suffer temporary and/or permanent heart block due to the fact that his vessels are bent the wrong way and are in funny places. If heart block occurred and it did not correct itself then Jack would have to get a pacemaker. I was shocked at this. Now, I know that with any procedure there are risks, but I guess I had no idea that my 4.5 month old child, who is doing so great despite a messed up heart, could have to live with a pacemaker because of a simple procedure. Now, I don’t know if I want the procedure done at all. I have really been thinking and praying about it and I just don’t think I want to risk the odds of something happening. The reason for the heart catheterization is to measure the exact pressure of the pulmonary artery to say 100% that Jack can skip stage 2, the Glen procedure, of the heart surgeries. The grey area comes in because even without of the heart catheterization, Jack would be skipping the surgery because he is showing no signs of needing any intervention at this time. Rather we do the procedure or not...Jack will not have the stage 2 surgery done unless he begins to show signs of congestive heart failure. The stage 2 surgery is usually done around 6 months of age to enable a child’s heart to remain healthy until the finally surgery (Fontan procedure) can be done between 18-24 months. As long as Jack keeps progressing like he currently is...the stage 2 will be skipped. If at some point, before he is 18 months old, he begins to show signs of heart problems then the Glen procedure will be done to give him some more time before the final surgery is done. Given all of this I don’t see how doing something now that could cause Jack to have a pacemaker is going to change our plan of care. Brian is going to send Dr. Breitbart an email and ask if we have to have the procedure done. I want to know if there is a piece of the puzzle that I have missed. I just want to do the right think for Jack, and I do not know what that is right now. But I am leaning toward not having the procedure done.

First Hand/ Foot prints

2009-08-21T06:16:00.000-07:00

Sunday, November 16, 2008

Thank you, Julia!!!

Here is Jack getting ready...

First Halloween

2009-08-20T16:41:00.000-07:00

Friday, October 31, 2008

I was all excited for Halloween this year...It was going to be Jack’s first Halloween so it was very special. But instead of getting all dressed up to go trick or treating...Jack stayed in and threw up. YEA!! Our first stomach virus. Brian and I dressed him up anyway, but he was not feeling it too much.

So, thanks to Pam, Jack was a pumpkin this year. He seemed to like his outfit...but he kept eating the leaves.

Pre costume...

then the body...

then the hat and leaves...

then comes eating the leaves...

Four months old

2009-08-16T06:50:00.000-07:00

Monday, October 27, 2008

It is hard to believe that Jack is four months old. He is growing bigger everyday. He is talking up a storm and seems to find new sounds each and everyday. He is getting better at pushing up on his elbows while on his stomach, but (much to my disapproval) he is still not interested in rolling. Being a physical therapist that works with children, I am learning first hand want parents have told me all these years... “My child just doesn’t work for me...” Well, now I see it because Jack will not work for me at all. He just eats his hands for makes funny noises every time we have tummy time. He is loving sitting up in his chair, and likes to play with his toys while he is sitting.

I found these pants and thought they were perfect for Jack in so many ways...

Learning about grandma

2009-08-16T06:46:00.000-07:00

Friday, October 24, 2008

Today is an emotional day for me. My mom would have been 61 today. It has been almost 5 years since my mom lost her long battle to breast and bone cancer. I spent the day telling Jack all about her and showing him pictures of her. It is hard to believe that he will never get to meet and know her. He will never get to share with her some of the amazing memories I have with her. She would have loved him so much!! She always wanted grandchildren...and I hate that she did not get a chance to experience being a grandmother. Jack has her joy for life!! I am lucky to be able to see that trait of her in him.

Through the last four months, I have had to learn to be a strong person despite what life throws your way. I like to think that I get my strength from my mom. She was the bravest and strongest person I know. Even through all the years that she battled cancer, she never let it rule or control her life. She lived life despite cancer. She lived life for me and my sister. One day Jack will get to really know who his grandmother was, but for now I just show him pictures. Being a mom is the most wonderful gift that anyone could receive. My mom always told me about the love a mother has for her children, and I finally understand what she was talking about.

Happy Birthday, Mom!!

No surprises in Boston

2009-08-15T17:27:00.000-07:00

Sunday, October 19, 2008

The visit to Boston went well. Jack did great on the airplane. He has decide that private jets are the only way to travel and he never wants to ride coach!! Uncle Ed even put one of the seats down so we could use it as our changing table.

Meeting Dr. Breitbart was awesome. He was as nice and thoughtful in person as he has been via email and phone. The day of our appointment started out rough. We had orders that Jack had to stop eating by 8:30 am (formula), 10:30 am (breast milk) and could not sleep past noon for our 2 pm appointment. You have all seen my son...he loves to eat!!! So, this was no walk in the park. He screamed a lot!!! This child has never been deprived of food a day in his life, so he was very confused as to why I was just watching and holding him instead of feeding him. I cried off and on the whole morning...it was very hard listening and watching your child cry, knowing how to fix it, but not being allowed to do anything about it. We found the hospital easily, thanks to Aunt Suzan, who had worked at the hospital many years ago. It was clinic day for the cardiology department, so it was a mad house inside the office. It was standing room only...with a lot of sick little kiddos. Once we got back to our room, Jack had to be weighted and measured so the nurse could know exactly how much medicine to give him to make him sleep. He weighted in at 16 pounds 5 ounces, so this meant a good amount of medicine. The nurse told us of the risk before, during and after the sedation. We had to sign a bunch of papers...and the process started. I had to have Brian hold his hands while the nurse administered the chloral hydrate into his mouth. I, of course, was crying and Aunt Suzan was hugging me during the whole procedure. The sweet nurse told us that it could take up to 20 minutes to take effect. Not for my son...the child who was food and sleep deprived fell off to la, la land in under 2 minutes!!! I just held him as he fell asleep in his little hospital gown. I then had to lay him down on the hospital bed so they could begin the sedated echocardiogram. Brian, Aunt Suzan, and I got to be in the room the whole time the echocardiogram was being performed. The tech worked for 1.5 hours getting picture after picture, measuring arteries and veins, and watching each chamber pump. It really is quite amazing how modern technology works!!! During the procedure, Jack oxygen level dropped to 79%...the nurse quietly turned on the supplemental oxygen and laid it in front of his nose and it immediately went up. Later she told us that this is completely normal because the tech has to push down on the stomach so hard to get different angles for the pictures that it affect the way babies breathe and their oxygen levels. So, after the long procedure...Dr. Breitbart came into the room to go over the findings.

First he started by saying that Jack is perfectly “balanced” right now. He is very pleased at where he is right now and could say that he has never seen a kiddo with his condition doing this well. He confirmed that Jack has double inlet single ventricle with pulmonary stenosis along with L-TGA (self corrected transposition of the great arteries). This means that his right ventricle on the left side is not large enough to be considered a working ventricle, so his heart is working as one (or single) ventricle. This diagnosis rules out any possibility of a double switch procedure. So, the surgery that will be performed on Jack will be the modified Fontan procedure. The next step, Dr. Breitbart wants to take is to have a cardiac catheterization done next month to measure the pressure in his pulmonary artery. From the echocardiogram, the pulmonary artery seems to be in perfect balance with the stenosis. Dr. Breitbart said any more narrowed or wider and he would not be “balanced”. He wants to measure the pressure of the artery because this will determine if Jack has to have the Glenn procedure (stage 2 out of 3). If the pressure reads too high or too low then Jack will have the Glenn procedure around 6 months of age. The Glenn procedure is done to give a child’s body more time to grow and develop while they wait to have the Fontan procedure. In the Glenn procedure, they will connect the superior vena cava to the pulmonary artery. By doing this, pressure is taken off of the single ventricle to pump enough oxygen poor blood to the lungs. As I have mentioned before, the problem with Jack’s condition is the fact that the single ventricle gives out over time. Well, the doctors do not want any damage to his single ventricle before Jack is 2 years old and can have the Fontan procedure so the Glenn procedure is done as a preventative to protect the single ventricle. So, we will know after the cardiac catheterization if he will need his first surgery, the Glenn procedure, or not. Dr. Breitbart feels like the cardiac catheterization is going to reveal that his pulmonary artery is in perfect balance, but he wants to be for sure.

One great thing we learned from the visit is that Dr. Breitbart and Dr. Meyer (the surgeon) perform the modified Fontan operation in a different way then Dr. Pearce had told us. There are two ways to perform the modified Fontan operation...the lateral atrial tunnel Fontan and the extracardiac conduit Fontan. In both methods a total cavopulmonary connection is created, but by different means. With the lateral tunnel a baffle is placed in the right atrium to partition systemic from pulmonary venous blood. Because this partition comprises less than half the circumference of the pathway from inferior vena cava to pulmonary artery, the remaining native atrial tissue can grow to accommodate increased systemic venous return over time. The growth potential makes this type of Fontan operation suitable for smaller children without the need for future enlargement of the pathway. In the extracardiac conduit type of Fontan, one end of a synthetic tube graft is connected to the inferior vena cava and the other end to the pulmonary artery confluence. This pathway has obvious size limitations since the graft cannot grow. Brian and I were told that UAB would only do the conduit type and I was unaware of any other way to perform the Fontan. So, I am very excited about the lateral atrial tunnel approach!!!

Brian and I are so thankful that we got a second opinion and that we are going to Boston!! All and all the trip was very informative and I am so glad we went and had Aunt Suzan with us. We could not have made it through the day without her love and support every minute of the long procedure!!! It was very emotionally hard on me...it was so hard seeing my little, precious boy lying lifeless on the hospital bed with his little hospital gown on. I cried a lot. I think I cried more because of what is to come for him...I wish this one test was all he had to endure, but this is just the beginning...and that is hard to take as a mother. My heart breaks at the thought of all the future tests and surgeries his little, perfect body is going to have to go through. I do gain peace of mind knowing that he will be in good hands and that he is doing so well right now. I still pray every night that Jack will glorify God and He will use him for His glory!! But I am very selfish, though, and I want a miracle so he does not have to endure the pain of any surgery, the medication that will follow, and the lifetime of doctor appointments...and the scars that will remind him everyday that his perfect body has an imperfect heart.

Leaving for Boston

2009-08-15T15:05:00.001-07:00

Tuesday, October 7, 2008

We are leaving for Boston this weekend. I have been really thinking about it all week. It really makes Jack’s heart problem very real. I had a scare last week...I thought he was sleeping to much so I took his O2 and it was way low. I freaked out, call Brian at work, and began to cry. Every thing is ok. The O2 monitor just was not on tight enough, but I was a mess for several hours!! I think everything just hit home. That something is going to happen to my baby. I forget about his heart when I am with him. He just looks and acts so healthy. I just want him to be “normal!!” It is hard enough figuring out the life of a baby...is he eating too much or too little...is he sleeping too much or too little...that when I add his heart into it sometimes it is just too much. I think the worse part is, I can’t just “fix” his heart. I know as he gets older, I will think about it less and less, but it will always be there. It is not something that will be “fixed” with one surgery and we get to move on.

I am looking forward to meeting Dr. Breitbart and talking to him about our surgical options. I am a little nervous about having Jack put to sleep while they run all the test. He is just so young!!! Please pray that the doctors get some really good pictures of his heart and they get a clear idea which surgical procedure will best fit Jack. Please pray that Brian and I handle everything with courage. We leave on Saturday and return late on Tuesday. I am so thankful that we do not have to get on a commercial airline and that my aunt can come to the doctor’s appointment with us. I will keep everyone posted.

Playing with the nanny

2009-08-15T06:22:00.000-07:00

Monday, October 6, 2008

Jack just loves our nanny. She is wonderful. I just love that she loves him and plays with him while I am at work. She even takes great pictures of him when he does something really cute. Here are some...

He is getting so big!!!

Real men wear pink...

2009-08-15T06:21:00.000-07:00

Sunday, October 5, 2008

Brian, Jack and I went over to the Kizzire’s house to have a wedding shower for a friend and to watch football. I packed a bag for Jack because we were going to do bath time and put him down over there since he goes to bed so early. This way we could stay and hang out. Well, when we started his bath, I realized that I remembered the bath tub but I forgot his overnight bag with all his bath soaps, lotions, and his pjs on our sofa. So, we had to borrow everything from Karen and Jeremy’s 2.5 year old little girl, Anna. They were so kind to go up in the attic and find us a footy outfit for Jack to wear to bed. I decided I had to get a picture of him in Anna’s footy pjs. I think real men can wear pink...so we are starting Jack on that early. He does make a pretty handsome little girl!!! Thank you Anna for letting us borrow your pjs. I will be sure to tell this story at their wedding...

First Day Back to Work...

2009-08-15T06:19:00.000-07:00

Wednesday, September 24, 2008

I started back to work today. I have been very excited about starting back. I have missed all the kiddos and families that I use to work with. I am so very lucky to have found a wonderful care taker for Jack while I am away. She is just awesome and loves him already. She was so sweet today to come early so we could talk before I left. She put up with me retelling her all the things that we had already gone over. She even sent me a picture of Jack sleeping (and snoring) while I was at work. What a great sitter, huh!!!! I am so excited to have found her and Jack really likes her, too. We talked about it last night...

The work day just flew by. It was great to hear how much I was missed and to see how much all the kiddos had grown and how much their gross motor skills have improved. I am so lucky to have the opportunity to work 2 days. I have the best teammates ever!!! They are having to sacrifice a lot to only have me 2 days and they deserve a lot of credit for being great and amazing professionals and friends!!

I have to admit that I did cry when I had to leave the house this morning, but a very special friend talked me through it and my day was amazing. So, over all the first day back, although crazy, was very good. The best part is the sitter said she had a blast and can’t wait to do it tomorrow. Today was a good day!!!

Special Meeting

2009-08-13T16:00:00.000-07:00

Friday, September 19, 2008

I had the chance to meet an amazing young lady today. Not only is she a terrific nanny and possible babysitter for Jack during the days and weekends, but she was born with transposition of the great arteries. It was so wonderful to be able to talk with her. To be able to ask her questions about all of my concerns for Jack. She is an active, healthy 26 year old who has her whole life ahead of her. She had open heart surgery at 4 months of age and a pacemaker implanted 5 years ago. The surgical procedure she had is no longer preformed but the outcome of her procedure left her heart working with just one ventricle, just like what Jack is probably going to have done. It was so reassuring to see the 2o year longevity that our doctors have told Brian and I being thrown out the window. She goes to her cardiologist every 6 months to check her heart, and the doctors at UAB have told her that her heart only shows very minimal deterioration, so small that there is no concern about it. And this is even with her right ventricle, which is the smaller wall ventricle, doing all the work. How encouraging!!! She is going in October to have the battery in her pacemaker replaced, which she will continue to have to do about every 5 years or so. She told me how her life as a young child into adolescents was very active. She did say that at times she had to take breaks, but enjoyed participating in every activity she wanted to with her friends. She was even a dancer. She said she just learned how to self regulate herself. I asked her if she gets scared about the uncertain future. About the to possibly of having to have a heart transplant. She said she only really thinks about it every 6 months when she is at her cardiologist check-ups. We talked about the advancement of medical technology and how there will probably be more options for her and Jack instead of only a heart transplant down the road.

I felt like I got to look into the future by talking with this young lady. I finally got the answers to questions that only someone in the same position could answer. She gave me so much hope for Jack. But more importantly she gave me so much peace!!! I am so thankful to have her in our lives.

First Play Date

2009-08-13T15:43:00.000-07:00

Friday, September 19, 2008

My great friend Amber and her son, Drake, drove over from Georgia for the afternoon. We had such an awesome time. The boys did not get as much out of it as we did. Drake is 6 days younger than Jack. Yes, Jack is huge compared to him. Drake has the prettiest blue eyes and the perfect little head. I tried to get Drake to show Jack how to push up on his arms to roll over, but Jack did not pay him any attention. Maybe one day my son will lift his head while lying on his tummy, instead of licking his arms. Jack tried to show Drake how to bat at objects hanging from the play gym, but I think Drake was too overwhelmed by Mr. Star...

We had a great time just hanging out and talking. We went to SOHO for lunch and met some of our college friends. It was a great afternoon!! Thank you Amber and Drake for coming over to see us!!!

Sad face...

2009-08-13T15:39:00.000-07:00

Thursday, September 18, 2008

I have been trying to get a picture of Jack poking his bottom lip out. I finally got some. I was making raspberries at him and I don’t know if he was trying to copy me or it was making him upset. But I finally got the picture I have been trying to get for a quite some time.

Check-up at the Cardiologist and Pediatrician

2009-08-12T11:51:00.000-07:00

Wednesday, September 17, 2008

We had our check-up with Dr. Pearce, the cardiologist at UAB. They checked Jack’s oxygen levels, which was 94%. They performed another 2-D echo/Doppler study (looked at his heart) and noticed no signs of congestive heart failure. All his valve measurements were good and where they should be. As Dr. Pearce said, we are in a holding pattern. He did say that he was very pleased at how stable Jack is. As the doctors like to say, Jack has a “relatively balanced circulation” at this time. I just love their wording... Dr. Pearce seems to think if Jack continues to progress like he has been, then he should be able to wait until spring/summer before having to have surgery. He did say deterioration can happen at any point.

As Brian and I where sitting in the waiting room of the cardiologist office waiting on our results from the genetic testing, I watched all these families come and go with there little ones (and some big ones). I find myself sitting and wondering what each child has...are they going to make it...is it worse than Jack’s...is it at all like Jack’s. It is a strange feeling being on this side of things. Working as a pediatric physical therapist I see child with special needs and I want to fix them. I want to do whatever I can to make the child and their family better. But these kiddos in the waiting room, including my son, I can not fix... It is quite a hard concept for me!! Because, like Jack, these kids do not look or act “sick” but inside their small little chest lies a serious problem.

The genetic results showed that Jack does not have any chromosomal abnormalities. This was a true answer to prayer!! We are so thankful that everything else seems to be in order.

We have scheduled our trip to Boston to meet Dr. Breitbart and Dr. Mayer for October 13th. Jack will have a sedated ECG and other test. Brian and I feel so lucky because my uncle has a meeting in Boston and the three of us are going with him and my aunt on his company jet. We will not have to bother with germs from commercial airlines. This also means my aunt will be able to go to the meeting with us, which I am very excited about. It will be nice to have someone else there to hear the information and to have an option. I told my aunt that I can not believe that Jack will ride his first private jet at 3 months...I did not do this until I was 29. It has started...my child gets to do things way before I ever even dreamed of doing things.

The pediatrician's visit went great!! It was very “normal” since we had just seen the cardiologist, Jack did not need his oxygen taken or anything heart related done. He weighted in at 14 pounds 8 ounces and is 25 inches long, both of which puts him into the 95%. His head circumference is 16, which puts him into the 75%. Dr. Denton is very pleased at his growth. We where told that this is great “considering his condition.” I just love those words =(. Jack got his first shots. He was not happy about them at all. I think he turned 4 different shades of red. I debated long and hard about the shots. I talked with several friends, one who has a couple of sons with special needs. I don’t think there is a right or wrong way to do the shots. I do think they are important, but does a little baby need so many at once? It is so tough!! Thank you so much to my friends who put up with me asking them tons of questions. I must say, at least they used cute band-aids!!

2009-08-12T11:43:00.001-07:00

Monday, September 1, 2008

For Labor day this year, Brian and I decided to pack up the car and make the 8 hour trip to Sullivan’s Island, an island right outside of Charleston, SC. My aunt and uncle have a beach house there. I never new adding one little boy would require the addition of so much stuff for a trip. We almost had to trade in my pilot for a bigger SUV just for the extra stuff. We brought so much...well, we could not travel with out Mr. Star and the play gym, the rainforest bouncer seat, and tons of Jack’s favorite toys. Yes, we were only going for 3 days...but I did not want my kid getting bored. :) The drive over was not so bad. I sat in the back with Jack and played with him when he was awake to keep him on his normal schedule so he would still sleep that night. We only had to stop to feed him twice. I was very impressed with how well he did in the car. I even brought the breast pump and pumped while we drove. Thank goodness for tinted windows!!!

The beach was wonderful!! My aunt and uncle where there. My aunt’s two sisters. My dad and Nena. And my sister and Todd. I don’t think Brian and I even got to hold Jack except for putting him down for naps and bedtime. It was so relaxing for us and refreshing. The best part was that Jack started sleeping 11 hours...yes you read that right...11 hours. I am officially in heaven!! He now goes to bed at 7:30 and gets up at 6:30.

I had a lot of fun spending time with family and drinking wonderful wines!!! It has been a long time since I have gotten to taste my uncle’s wines and it was very tasty.

My uncle got his boat ready and dad, Ashley, Todd, Uncle Ed, Brian and I went out on the ocean while Jack stated home with my aunt and her sisters and Nena. It was so much fun to float away for a couple of hours. We drove to a small island away from Sullivan’s Island and Todd got some great pictures of a lighthouse and of the beach house from the ocean.

The biggest part of the trip was Jack’s first time in the pool. He loved it. He loves his baths, so since Aunt Suzan’s pool is heated I knew he would love it, too. I think Brian had just as much fun as he did!! Jack is a born swimmer!!!

Overall our trip was wonderful!!! I think for our first time driving with Jack and being away it was amazing. We can’t wait to go back. Sullivan’s Island is so relaxing and to just sit on the porch and rock while staring out at the ocean is just an amazing thing!! It truly is the most wonderful place on earth!!

2 Months and Our Anniversary

2009-08-12T11:34:00.001-07:00

Wednesday, August 27, 2008

Jack is 2 months old today!!! And it is our 4 year anniversary. WOW!! Two big milestones in my book. I feel very lucky to have this thriving, happy baby boy and an amazing husband. I could not ask for anything more. I am married to my best friend...someone who does so much for Jack and me. Sometimes I feel like I expect too much from him or have him do too much, but he always comes through. I could never truly put into words how much my family means to me, especially my husband. I could not make it through each day without him.

Good News

2009-08-12T11:26:00.000-07:00

Friday, August 15, 2008

Dr. Briebart called Brian on Friday to let him know that he had received the video footage that was taken at our last cardiologist appointment at UAB. He said after reviewing the tape that he is not ruling out the double switch procedure. Dr. Pearce had said that Jack’s right ventricle (on the left side) was not big enough to act as a pumping chamber so the only procedure available was the Glenn-Fontane. Well, Dr. Briebart said that the ventricle might be large enough to act alone. He said he would know for sure after more test where run on Jack. He also told Brian that we could come up to Children’s Boston to meet him and Dr. Mayer before we schedule surgery. This made me very happy. In my head I want a round table discussion about Jack by the doctors in Boston way before we have to have surgery. We are heading back to the cardiologist on the 29th... Keep praying for Jack’s little heart.

Continuing to Grow

2009-08-12T11:18:00.000-07:00

Thursday, August 7, 2008

Jack had a weight and oxygen check at the pediatrician's office today. His oxygen was 89-90% and he weighted 11 lb. 12 oz. Dr. Denton was very pleased at his weight gain and his oxygen level. We are still in a waiting period. She told me to keep doing what I am doing. Jack continues to amaze me. How can this little kiddo just keep maintaining his body with such a messed up little heart? I continue to pray everyday for his heart. I pray for healing of his heart!!! I pray that he can get through his major gross motor milestones before he has to have surgery. I don’t want him to get delayed because of heart surgery.

After the pediatrician visit, I had to go for my 6 week check up at Henderson and Walton. One of my best friends was in town from Nashville and came with me to watch Jack while I was with Dr. Lassiter. It was a hard visit because none of my doctors knew about Jack’s condition, so I had to tell them all about it. When I was telling Dr. Lassiter, she got upset. She was stunned!! How can I deliver a baby just feet away from the doctor’s office and them not know what happened? I am just starting to look a Jack and not think about his heart. I don’t need my doctor to get upset. I can finally talk about it without tearing up myself. Dr. Lassiter continued to tell me how blessed Jack was to have me because I at least have some knowledge and can help him. I am very thankful for that, but sometimes I don’t want to keep hearing it. Why can’t I just be knowledgeable with a completely healthy little boy? On a positive note...I weigh ten pounds less then I did before I even got pregnant. YEA!!!

I look at Jack and he is so big...I can not believe he is 6 weeks old. He is an awesome little boy. He is sleeping 8 hours in his first stretch at night. Now, if Brian and I could just go to bed instead of staying up we would actually get some sleep too. Everybody told me I would ask myself what we did before we had Jack...and it is true. I have no idea!!