More Reflecting…

I took the above picture of Logan and it reminded me so much of one of my favorite pictures that I took of him when he was a newborn. 

The last year has been such a daze…I barely even remember some parts.  Like when he was 1-4 months old and he had continual blue spells and I literally had to rock him for 6-8 hours a day trying to calm him down.  I remember once I stood and swayed him in my arms for 3+ hours straight because it was the only thing I could do to keep him calm.  When he cried he sweat so bad and he turned so blue. 

Even his first OHS seems so far away even though it was only 7 months ago.  I can’t believe how much we have been thru in the last 18 months, it is truly mind-boggling.  In the last year I have prepared for his birth…and prepared myself mentally for his death.  We have watched him over come tremendous odds and we have watched barely clinging to life. 

So Logan at 12 months old….

Here are the Stats….

Weight: 7 Kilo (15.4 lb.)

Length: 27 inches

Clothes size: 6-9 mo. onsies and 3-6 mo. pants

Strength: Holds head (not indefinitely though, he does get tired) can roll from stomach to back (not vice versa though).

Untitled from kristen spyker on Vimeo.

I am super happy about this new skill.  It gives me hope that he has some ability to get stronger albeit very very slowly.

Words: Barely talks but occasionally babbles dadda…mamma…and something that sounds like all done.

Likes: Baby TV (its a network on Dish and he it completely addicted), he loves the texture of foam, especially the little foam bath stickers, he loves his Little Giraffe blankets, and his Wub a nubs. 

Dislikes: Groups of people, the sun, tummy time, anyone in scrubs or a white coat (except for Dr. Patel, he loves him!) and hats. 

Food: He eats next to nothing.  The only thing that he will eat is Mum Mum biscuits but they have next to no calories so I don’t even like him eating them.  He will also occasionally eat a few cheese puffs.  That is it.

 

I really wanted to take some cute pictures of him today and I guess he just wasn’t very smiley….

And then I don’t know what I was thinking but I really wanted to get a picture of my two boys…. haha that didn’t work….

 

I did manage one smile at the end!!!! And then a few more with Momma and Dadda…

I will update on after Logan’s cardiologist appointment on Tues.

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Reflecting…

 

While Logan has turned one years old it has left me with much time to think about the last year.  When we got the diagnosis, how devasted we were.  I think back to that period and I can’t believe how little I understood and how little I knew about what life was really going to be like.  And then I think back to our very ugly NICU experience which really opened my eyes to massive problems our medical system has.  It opened my eyes to the massive discrepancies between heart centers, cardiologist’s, and other clinicians.  It has changed my world view so much.  Things that were once important are no longer important, things that would’ve seemed silly to worry about just a year ago, worries me constantly every day.  People that you thought would always be there for you….disappear.  And complete strangers become your family.  The journey our family has been on in the last year is about as far off the trail that we set out on as one can go…but I am okay with that. 

The statistics for right atrial isomerism (the specific type of heterotaxy that Logan has) are beyond freightening.  I have read studies ranging from 20-40% survival rate at one year old.  And at five years this number dwindles even further….and statistically the amount of these children that make it to adulthood is painful to even think about.  I try not to dwell on these numbers.  Logan has had every single risk factor for death even among heterotaxy kids (right isomerism, asplenia, severe AV valve regurgitation, obstructed pulmonary veins) and he beat the odds.  I have so much hope for Logan because I believe we have the right team of doctors.  I think we have a brilliant cardiolgoist that has done everything under the sun to keep Logan out of the hospital and to make sure that thru all this he has a good quality of life.  And we have arguably one of the best pediatric heart surgeons in the world, who beyond being exceptionally talented, has the biggest heart and is incredibly compassionate.  I really feel like we can do this.  I really feel in my gut that Logan is going to be one that grows up to be an adult.

 The next surgery is going to be a big one and very risky.  The surgery is going to attach his IVC (inferior vena cava  – the artery that goes to the lower half of your body) to his pulmonary artery.  This direct connection will make it much easier on his single ventricle.  His first surgery (the Glenn) is when they connected the SVC (superior vena cava – the artery that runs up your neck to your brain) to his pulmonary artery, once the SVC and the IVC are connected directly to the pulmonary arteries he will have complete fontan circulation.  This is the ultimate goal.  This is so far the best possible way for single ventricle kids to live.  But all of this is dependant on one thing.  Your pulmonary arteries.  Fontan circulation requires children to have a lot of blood flow thru the PAs and Logan’s PAs are small.  It is going to be difficult for his body to adjust to the fontan circulation having small pulmonary arteries. 

Logan saw Dr. Patel last Tuesday and had an echo done.  He has grown a lot of collaterals because his pulmonary arteries are small and blood is finding other routes to go down.  He is going to need a cath in the relative near future to coil more of these collaterals off so that all that oxygenated blood is forced back into the PAs and reaches his lungs instead of  just getting lost in collateral viens.  His O2 right now is low 70’s.  He will most likely need a cath in the next 6-8 weeks unless his oxygen levels drop futher sooner.  We will be going to Boston for that cath and more discussions will happen at that time about the timing of the fontan.  We have heard that most likely he will have a very early fontan.  Most kids have this surgery between 2-4 years old.  Logan will have his at the latest 18 months.  This is because his heart will not be able to function well on just the Glenn connection for that long.  If we do the fontan too early we deal with having small pulmonary arteries and the procedure is risky….if we wait to long there could be too much resistance and his pressures in his heart and lungs could be so out of whack that it wouldn’t take to a fontan either.  Timing is going to be everything here….and just like with life, every person with a set up lips has a different opinion.  Dr. Patel is going to see Logan in two weeks from last Tuesday. 

 

I would also like to wish a Happy Father’s Day to daddys around the world and especially the ones dealing with children of special needs.  Logan’s Dad said his biggest fear about having a baby was that he would have one with severe medical problems.  It is so interesting because even though his worst fear came true, I think if you saw the way he cuddles Logans, and watches him sleep you would see that his worst fear has grown into the biggest love of his life.

Happy Birthday Logan!

 

 

Dear Logan,

I know that you hated your party,

I know that you would have preferred to be cuddled up with your blanket all alone and watching cartoons, than have all these people over but, so many people love you and we just had to celebrate your life.

I know you wanted nothing to do with your cake!

I know you wanted nothing to do with your presents!

I know that you can’t sit in a high chair yet, or crawl, or stand….

I know you hate the sounds and noises of the party horns and children screaming.

I understand why you could only stand to spend about 10 minutes at your own party.

I understand why you had to sleep for about 15 hours straight after the party ended.

The party was for us but it was to celebrate YOU!

I feel so lucky to have you in my life.  I wish everyone out there knew that what a gift you are.

We had to celebrate YOU!

YOU have taught me more about life, love, and the human spirit, than book or experience ever could.

YOU have inspired so many

YOU have given hope to so many

I LOVE YOU LOGAN!

I recently found this quote that some someone had posted and it immediately was ingrained into my mind, because it is exactly how I feel about you….

 

In this grand universe

of all the places to be

and who to be with,

I found my way to you…..

~Unknown

 

Love,

Mommy