Cardiologist!!

September 27, 2010

This morning, we went to the cardiologist for another follow up.  Last time we were there, the doctor told me that she was sending Jack's file to the "Cath Conference" so that they could evaluate his condition, and discuss when his next procedure should be done.  One of the concerns was that his shunt would close on its own, and the valve wouldn't provide enough blood flow to the lungs.  The cath conference docs decided that the catheter didn't need to be done right now!  Their theory is that his valve is doing okay right now, although it will definitely need to be further opened soon. 

Their plan is to shoot for another cath procedure in about six months, which is right around Jack's first birthday, unless something happens to make them change their plan.  The things that can happen include a significant decrease in his oxygen saturation levels over a short period of time, weight loss, cyanotic episodes (blue skin) or some other sign of distress.  In the meantime, this means that I will have to monitor his saturation levels more frequently than I have in the past, which is a small change in our day.  Jack doesn't like it, but it is completely non-invasive, just annoying, because I have to wrap a probe around his toe or hand.  I am looking for a slow, gradual decrease in oxygen saturation levels, which may suggest that his lasix (diuretics) need to be decreased, in order to increase the fluid in his heart and lungs. 

So, I hope this is clear.  I was so excited about the fact that Jack will get to grow so much more before his next procedure, that I am a little "buzzy" right now!  He should be big and strong by then, for sure!

Below is a new "baby fashionisto" photo.  I love polo shirts and overalls on a baby!  Why not combine them?

Below is a photo of us in the cardiologists office.  Jack is wrapped in a blanket, because he has to be "nekkid" for his exams!

And below is a photo from a few weeks ago, that I forgot to post.  This is Jack with his new teddy  bear, "Dr Beary von Heartwell!"  I figure I'll use it in a few years to help him deal with his frequent visits to doctors and surgeons.

So there you go!  Please continue to check in on Jack!

Love
Maggie

Road Trip!!!

September 26, 2010

Jack had a big week last week.  And a LOUD week!  He's either teething, or extremely unhappy about the meals and lodging he's been receiving.  Unfortunately, his crying and fussing has been on the uptick, but I keep reminding myself that at least he's giving his lungs a workout.

On Monday, we drove to Columbus to visit with Grandpa, Aunt Katie and cousins Lizzie and Frankie.  Lizzie has begun soccer, and practice was a hoot!  Imagine trying to get thirteen 3-year-olds to follow directions.  It was hilarious!  Below is a picture of Jack with his cousins.  They all had a big time!  There is also a picture of Jack with Grandpa at the soccer field.

Of course, I feel safe travelling to Columbus because I found out that The Sibley Heart Center has an office there!!  I am reluctant to go more than an hour or so from Atlanta in case Jack has any issues, but Jack's cardiologist gave me the OK, and a list of the doctors in the Columbus office in case I need them.  This is great news for the family!


On Wednesday afternoon, at 4:30pm, I got a call from the physical development offices.  I vaguely remember being told, while Jack was in the NICU, that he would be called for an evaluation of his development, due to his prematurity and cardiac issues.  So this nurse told me that she had trouble finding my number, but Jack had an appointment on Thursday afternoon.  Fortunately, I was able to go up to Emory, because they didn't have another appointment available for months. 

During his evaluation, the physical therapist told me that premature babies often had physical and mental developmental disabilities, and that if we could monitor his progress from an early stage, that there were certain interventions we could employ to help them have the least effect on Jack in the long run.  Her first check was of Jack's head.  Many babies who are intubated aren't rotated in their beds frequently enough, and so they have flat spots, which actually can develop into serious defects.  Fortunately, Jack's head was "beautiful" and I confirmed that the NICU nurses at Egleston, as well as the CICU and Cardiac step down nurses were extremely diligent in turning Jack.  The only thing was that one ear is slightly more forward than the other, and people, I look at this kid non-stop, and I had never noticed it.  She said it was very mild and only cosmetic, so I was relieved!

Then she did some physical therapy play with Jack to see how his body and mind were developing.  Jack got a 14 out of 15 on the evaluation!  And the only thing that she noted was that Jack is failing to use his right hand enough, and that it is still clenched in a fist more than the left hand.  She gave me several exercises to add to the PT that we do everyday, and predicted that he would improve with some effort on our parts to make sure that the things he wants to grab are on his right side, requiring him to use that right hand.

Below is a picture of Jack in the PT office.  The therapist used that red apple toy to test his ability to focus on, and track a moving object, and he did great.  I guess it's lucky that when I do that exercise with him, I use a red heart, so he had already done this test at home!

Tomorrow morning, Jack has an appointment with the cardiologist.  I am a little nervous about this one, since at the last appointment, Jack's doctor told me that she was sending his case to the "Cath Conference" for the doctors to look at his data and decide when he needed another surgery.  I know it's coming, but I don't have to like it.

Hope you're all well!

Love
Maggie

PS - I've gotten a few donations for the fundraiser mentioned in the last post, and a few emails from people wanting Jack's mailing address.  THANKS TO ALL WHO ARE SUPPORTING JACK AND SIBLEY!

Jack Laton: Spokes-Baby

September 21, 2010

When I found out that my unborn baby had a heart defect, I admit, I had a few pity parties, and the theme was always, "Why Me, God?"  That theme eventually matured into "Why Jack, God?", and finally, "What are you trying to teach me here, God?"  I still can't understand why Jack had to have such a rough start, but I am beginning to see why he and I were put together.  He's a strong baby, and a heart defect was no match for this little fighter!  And I'm finding that he is teaching me to be a very strong Mommy, and if there's a condition affecting children, and I can help eliminate it, there's no match for us.

Jack and I will be participating in a very special fundraiser next month, and we need your help!  The Tae Kwon Do school (dojang) where I have been a student for over four years, holds a "Health Kick" every year to raise money for the Children's Miracle Network.  This year, they are going to direct all the money raised to the Sibley Heart Center at the Children's Healthcare of Atlanta Egleston campus!  Jack spent his most delicate days in the NICU at CHOA, and of course, the cardiologists, cardiac surgeons and pediactric cardiology nursing team at Sibley saved his life and continue to care for him.  Everyone was so wonderful to Jack, and we are so honored to be able to help raise money for Sibley!

I am writing this post to humbly ask for each of you to please support Jack, by supporting the Sibley Heart Center.  They are doing research right now, that will help Jack when he needs his future surgeries, including a valve replacement, and there are so many other children who benefit from the research and services they provide.  If you are able to pledge a donation, please do so, and email us at the address below, and we'll send you our mailing address.  Of course, if you already have our home address, please feel free to go ahead and send a check!

jacklaton25@yahoo.com

Please make all checks payable to:  Children's Miracle Network, and remember, all donations are tax deductible!!  The great thing about working with CMN, is that 100% of all donations will go to Sibley!

Below are some photos of Jack's other fundraising work so far.  We are looking forward to helping CHOA, Sibley and CMN do lots more events in the future!  Some good WILL come from Jack's congenitial heart defect, and it is going to start with sharing his story with those who can help make his, and many other children's futures, better.

Thank you for your consideration!!
Love
Maggie and Jack


Our First Gig!!  We spoke at a Golf Tournament hosted by McLane trucking on September 10th.  This company has worked with children's hospitals all over the country for years, and has raised millions!  On this day, they raised $26, 500 for CHOA - Atlanta!!  Terilyn Walton is holding Jack, she is the Children's Miracle Network representative who has helped us get involved.  Jack was a perfect gentleman the whole time!

Star 94 in Atlanta holds a big radiothon every year, during which they broadcast from the CHOA grounds, and include the testimonies of many of the families who have been treated there.  In the past, I have listened to the radiothon, and many of the stories, but I never realized how important the fundraising was.  Indeed, many of the stories were so heartwrenching, that I turned the channel.  This year, Jack and I get to tell our story, and I hope that it will move a few people to help CHOA.  Here we are with Cindy and Ray, the morning DJ's who interviewed us.  Jack did bring the interview to a halt with a hilariously timed poot, and Cindy though he was quite a cutie!

Jack Laton: Baby Fashionisto

September 19, 2010

It has been almost two weeks since I last posted, so I wanted to get one out tonight.  I am going to try to post at least every Sunday, so that you can expect a regular update.  Then, if I can muster the strength to post, rather than crash and sleep, I'll get more up!  I have been taking pictures of Jack in each of the precious outfits he has received.  I know he is going to outgrow them so fast, and I want to remember him, and how he looked in each one.  Below are a few outfits from the past few weeks.  Enjoy!

'Lil Buckaroo!  I love the pocket and the rolled sleeves, although, they seem a bit superfluous for an infant onesie.  The horse on the knee is so cute!

Go Jackets!!  He wore this one for the GT game.  We watched on TV, but clearly, we would have fit right in on campus!  Gotta love his expression!

Second GT outfit.  This one he wore for the second game, also on TV.  He wasn't smiling so big at the end of the game, when the Jackets had lost.  Actually, he was asleep.  Mommy was sad about the loss, though.

Mommy's Little Monkey.  He wore this one to a golf tournament which raised money for Children's Healthcare of Atlanta.  I thought it was appropriate, given the collar and buttons!  Watch for a post to come soon regarding Jack's new job as "spokesbaby!" 

Baby Bug Club.  This one is marked "newborn" in the collar.  I'd like to meet the woman who gives birth to a newborn who is over two feet tall, and weighs 16 pounds!  Jack also thinks the woman would be amazing! 

Hippity Hop!  I love this one!  And clearly, Jack does, too!  Such a happy baby...

Red onesie with dog house.  I know this one isn't a good shot of the outfit, but look at my kid sleep!  Pacifier popped out, Myrtle the Turtle at his side, drool flowing.  I cherish watching him sleep!  Such a peaceful face...

So, there you go.  Jack is growing so fast, and his personality is truly blossoming.  I will get more posts up soon, and I appreciate your continued prayers and good thoughts sent up for Jack.  He is doing well, and we continue to grow him in preparation for his next heart procedure.

Love
Maggie

I Know a Real-Live Genius...

September 7, 2010

I happen to be acquainted with a real-live genius.  Not the kind of genius with knowledge or abilities in some theoretical, esoteric area that may "change the face of science."  But rather the kind of genius who can listen to me drone on about my life, with its ups and downs, tears and hurt, and distill the actual issues down to a few, succinct words.  With the help of this genius, I have figured out that in the past year, I have lost all control over my life, and that I have trouble dealing with that loss of control. 

Those of you who know me well will chuckle at that last part and say to yourselves, "duh, I knew that about you.  I'm a genius, too."  Ah, but if that were the end, it wouldn't be so impressive.  No, the next step is the key.  I have, with the help of the genius, put into action, a plan to identify individual stressors and figure out how to deal with them.  This past week, I have been struggling with the feeling that nothing I can do will lasso this out-of-control life back into the barn.  But it turns out that there are things I can do. 

I have trouble asking for help, but I can't do everything.  So this weekend, I asked a friend to help me with the yard.  Because I don't want to have to depend on others all the time, I asked my friend to teach me how to use all the yard tools.  AND I HAD SO MUCH FUN!!  I used the edger, the weed wacker, the mower and the blower!  I also used the electric trimmer on the holly bushes and think I may have a special skill in this area.  I had always feared the edger, because the thought of a spinning metal blade coming in contact with the cement was terrifying.  As it turns out, it's not all that bad, AND you get a nice spark as a bonus.  So, I plan to keep taking care of the yard, because it's a whole lot easier to find someone to hold Jack for a few hours, than to do the yard work.  I'm feeling VERY independent and empowered, and this weekend, I plan to hang a curtain rod, and may even try to change out a faucet!

Speaking of Jack...  What a week!  This kid is a great sleeper.  Sometimes.  He again had trouble sleeping on Sunday night.  Perhaps he is developing a dislike of the workweek already?  He also tries to avoid naps during the day, as if he's worried he'll miss something if he goes to sleep.  So we continue to work on the schedule.  It takes 21 days to change a habit, so Jack still has two weeks, or so, to master the schedule. 

Jack is developing quite the personality, too!  Each morning he wakes me up with his fussing, and I walk down to his room.  I turn on the lights, and as I walk toward his bed, I imagine that he slowly sees my face as it appears above him.  Once I see him, I say "Good Morning, Jack!" and he smiles up at me, stretching and laughing, as if it's the most exciting event ever.  It's such a wonderful thing to see every morning!  And throughout the day, he continues to charm every person he encounters.  This kid is going to be a heartbreaker!

Well, I did have a few pictures to share, but I couldn't find the cord to transfer the photos from the camera to the laptop.  I will find that soon and make sure to give you a few extra to make up for it!  Jack is continuing to grow and change everyday, and I continue to be in awe of this little person that I made.  I can't wait to see what the rest of week holds for us!

Love
Maggie

Some Days You Eat The Bear....

September 1, 2010

And Some Days The Bear Eats You

It's been a week of ups and downs for Jack and I.  To begin, last Saturday night, Jack slept 7.5 hours, as I described in the last post.  But then Sunday night, we stayed at GrandMary's house, and he woke up every three hours.  I was sure that he would sleep well there, but for some reason didn't.  So Monday morning, I woke up tired and in tears.  That happens sometimes, especially when you're sleep deprived.  But I pulled it together, because we were on the way to the cardiologist for Jack's follow up.  I assumed it would be a quick and easy visit with no surprises.  Boy was I wrong.  Can you feel the roller coaster tick-tick-ticking to the top, about to plunge terrifyingly over the crest?  Here goes...

Jack's oxygen saturations were at 97%, an almost unbelievably high number for a PA (pulmonary atresia) baby so soon after surgery.  So that was great.  Then, we weighed him, and he is closing in on 15 pounds, now at 14 pounds, 13 ounces.  Great!  But then the doctor came in and noticed that Jack's feet were cold.  She checked his capillary refill by pinching his toes, and seeing how fast they went from white, back to pink.  It apparently wasn't fast enough, so she ordered another echo, "just to check on things."  Whoosh!  The wind in my face as I plummet towards the earth.

The echo seemed to take forever, and I noticed the ultrasound tech furrowing her brow and concentrating intently on the images she was capturing.  This, I have found, is never a good sign.  What you want to see is a quick swipe over the great vessels, a lingering, yet business like perusal of the lower chambers, an inspection of the pulmonary valve, including sound recordings of the blood flow, and finally a fly over of the BT shunt.  I have observed about a dozen echo's on Jack, and this is usually the way things go, so when the tech spent a little extra time on the valve images, I began to worry.   The doctor began to explain that Jack was experiencing a gradient across the valve that was higher than the last echo.  This means that there is a "bottle neck" at the valve, because it isn't open enough, and the blood is having to speed up to get through the opening.  Basically, the last balloon cath procedure didn't open the valve enough.  Here come the stomach-churning loop-de-loops...

Somewhere along the way, I had missed the doctor telling me that Jack may have to have further procedures after the last one.  It's understandable, I have watched Jack go through so much, I eventually began to tune out the stuff that was scary, especially once he was growing and doing so much better.  She told me that this defect is so very hard on the families of babies born with it, because it required so much patience.  The accepted protocol is to go slowly, making small improvements, and then waiting to see how the heart grows, adapts and functions.  The alternate course would be to do a more agressive procedure that would possibly result in a damage to the valve.  This would mean a valve replacement earlier in the childs life, and then more frequent valve replacements as the child grew.  So there you go.  She suggested that Jack would need at least one more procedure, hopefully not open heart, although she didn't rule it out.  She estimated that he would need it within the next few months to a year, but we are waiting to see.  My knuckles are gripping the safety bars, face white and ashen, but the ride is coming to an end, I can see the pavillion in sight...

On a positive note, Jack's valve didn't appear to be leaking backwards into the right ventricle very much.  This is great news, I think.  It could mean that the pressures are too great "forward" through the valve.  She did say that leakage could be tolerated for quite a long time, so that's something.  I saw a commercial recently that advertised research going on at Emory to replace heart valves through arthroscopic and catheter pathways, rather than open heart surgery.  I asked Jack's doctor about this research, and she confirmed that the procedure is already being done on adults, but that they anticipate doing it on adolescents soon.  It required a fairly large vein, so it's not an option for Jack yet, but maybe by the time he needs a valve replacement (which is a certainty) they will be able to do it in this manner.  Finally some promising, if not currently helpful, news about Jack's options.  Ahhhhh, safely out of the coaster car, and on firm ground...

Ok, so I'm not really so relaxed as if the ride is over, but I'm getting better as the days between the appointment and us increase.  We will go back in two weeks for another follow up.  It looks like that is our plan for the forseable future.  The "wait and see" approach has to be balanced with the "look frequently enough so as to not miss anything" approach.

And finally, I have some news that I'm really reluctant to share.  I am a little worried that I'm going to jinx it, but here goes....  Jack has slept all night (8 hours or more) in his own bed for the past two nights!!  As I type this, he is sprawled out in his bed, sleeping soundly.  He is such a great sleeper!  The only problem is that I have to keep him awake late enough, so that he doesn't awake at 4am.  Although if he does, I just feed him and he seems to be going back to sleep for an hour or two.  This gives me time to shower, do a few chores, basically get a little caught up on my OCD standards in house cleaning and de-cluttering.  Quite a ways to go, but still, I love it!  I feel like I'm rejoining the world!

Love
Maggie