I wear red for Logan.

Today had me thinking about all the children and their parents that I have gotten to know. The children that have passed on from this life are the ones that leave me with a burning desire to advocate and improve the outcomes for our kids.

I wear red for William.

I wear red for Noah.

I wear red for Elise.

I wear red for Pierce.

I wear red Ava.

I wear red for Rita.

I wear red for Jayson.

I wear red for EJ.

I wear red for Brookyn.

I wear red for Savannah.

I wear red for the countless heterotaxy children that I never met but whom I will forever be connected to by heart.

I don’t think its possible to describe the life we lead as parents to these children. The ups then downs, the unknowns, the waiting, the questions that can’t even be answered.
“there just aren’t enough kids alive, with what Logan has to have any real answers.” I have been told that one countless times.
If you just look at Logan’s first year of life, you will get a glimpse, of what our life has been like.

As far from any dream about ‘ideal birth plans’ as one could get

He was taken from me immediately, and I was not able to see him till the next day.  Excruciating is an understatement.

Blue Feet

Staring at my boys the last night before Logan’s first and most risky surgery, wondering if this was the last time Ethan would see his brother. At this point even though Logan looks like a normal baby….he really only had weeks to live.

His bidirectional Glenn, AV valve repair, TAPVR repair, and SVC ligation.

Yes, this was Logan’s post-Glenn oxygen sats.

See how very blue he was in this picture?  It looks like he is holding his breath or something but in fact the path that blood goes after getting oxygenated in the lungs was blocked and he had close to only have of the oxygen in his blood that a healthy child should have.

At this appointment I was told that Logan’s only chance of survival was a bilateral lung and heart transplant, because that blockage was not ‘fixable.’  This was the point that I decided that the only team I was going to listen to was Boston Children’s Hospital.  They disagreed, and this is when he had his ‘sutureless’ repair.

Despite Dr. Jim Lock doing an amazing cardiac cath and bringing Logan’s sats up 20 points, it was decided that he needed to have the obstruction surgically removed.

Despite the surgery opening up the pulmonary veins he still settled out in the low to mid 70′s post Glenn.  His heart however, was not having to work as hard, and for the first time, he didn’t become drenched in sweat while eating or crying.

Logan on his first birthday.  At 12 months old, Logan could not sit, crawl, or roll, Logan wasn’t even strong enough to hold his head up yet.  He was medically anorexic and wearing 3-6 month clothing.

This was just Logan’s first 12 months of life. 

That is why,

I wear red for Logan.

People are always asking me how I taught him this.  In all honesty, I have not made teaching a priority with Logan.  I am so happy he is alive that the only thing I could ever ask for is that he is happy.  He is most certainly physically delayed so watching BabyTV and Leap Frog videos have been a staple of his daily activities, not to mention he spends a lot of time playing toddler iPhone games.

It truly amazed me though, last night, when out of the blue he started drawing letters and numbers.  He drew individual letters and then he would write 23, and then say ‘tweenty free’ and then he would write 15, and say ‘fieve teen.’ please pardon my obnoxious joys and praises but I was utterly stunned with what I was witnessing.  He could not do this last week! It is terrible video quality and I took the video sideways but none-the-less, he is such a joy, beating every odd, he is my heart and soul, and please forgive me for bragging one more time!

So very proud of you Logie.

I will just share our holiday season with some pictures.

Christmas Eve

Ethan my 4 yr old Son.

First year with our Elf which was fun.  Logan didn’t understand but Ethan loved it. 

Playmobil Advent Calendars

One evening when it was just Logan and I we had so much fun baking cookies together.  He filled and dumped this nut chopper probably twenty times.  I was a huge help

Christmas Eve was again overwhelming for Logan.  I am not sure if its trauma from all his hospitalizations, or some sensory processing issues, or if  its completely normal, but he gets over stimulated very easily and sort of checks out.  Last year he couldn’t stand to be in the same room as the chaos, this year he couldn’t stand the sound of wrapping paper being ripped and crumpled, he sat in this chair for most of the night with his half sister Stephanie and played a game on the iPhone.  He didn’t open anything and had no interest in any toys other than this iPhone and a deck of alphabet cards.

Christmas morning was the same.  Logan had no interest and made a face and whined every time wrapping paper ripped.  He got some alphabet and counting books and he was set.  Ethan enjoyed the fact that he got to open more presents than Logan.  Yes, Ethan is 4 and yes that is a paci in his mouth.  I have nothing to say about this, other we have just had bigger fish to fry these last few years, and quite frankly I would rather Ethan be putting a paci in his mouth than his thumb which would be picking up many many more germs.

Love these pictures of Logan looking thru his alphabet and number books.

People were asking me about the book with all the numbers so here is a link on Amazon if your interested.  Logan Loves it!

http://www.amazon.com/ABC-Sesame-Street-Treasury-Numbers/dp/0375800425/ref=sr_1_1?s=books&ie=UTF8&qid=1358020372&sr=1-1&keywords=sesame+street+alphabet

It was a wonderful Christmas.  Hoping to start building more happy family memories.

As far as Logan is doing medically he is the same.  His sats are lower than everyone would like and although his cardiologist at Boston is worried we have decided to not bring him to Boston during the flu season.  We are going to wait until spring and then he will have a cath done.  Maybe they will be able to close his fenestration (the large hole in his Fontan conduit, essentially a man made ASD) and his sats would then go up but they may not be able to either.  If they aren’t able these are just the sats we are gonig to have to accept.  The fenestration closure is an all or nothing thing, they can’t make it smaller, its close it or leave it open.

He is still not eating much.  This is becoming very tiresome.  He is hardly growing (at his last appointment is was 100 grams or something) and he is hardly eating.  He is still getting most nutrients from Similac Sensitive Formula which is utterly ridiculous for a 2.5 yr old.  Yes, if you are wondering, “have you tired?” I have tried everything.

I am very anti-feeding tubes and I have actually found myself wondering about a G-tube (stomach feeding tube) lately.  Only for brief moments and I am not really even close to that point. I would only do that if he was continually losing weight and it was a very last resort.

This is one very finicky and stubborn child and food is the only source of control he has in his otherwise chaotic life.  I have been experimenting with some recipes that I have been having luck with and will post about that soon!

He is still only butt scooting, no crawling or walking, but he is tying! He gets on all fours but his upper body strength is just not there yet.  I believe crawling is going to happen soon.

He is still on Viagra or Sildenafil every 8 hours to help vasodialate his pulmonary arteries to reduce the shunting in his fenestration.  It is working okay, which it was working a tad bit better.  I think the O2 may have worked slightly better as a vasodialator on him but the couple of O2 pts isn’t worth the hassle.

I also recently got in the mail some pictures that were taken of Ethan and Logan last Christmas. They are some of the most precious pictures I have!  Thank you to Felicia Lewis at FML Photo Design! If you live in the Cleveland/Akron area highly recommend her! More info at http://www.fmlphotodesign.com

What a difference a year makes!

2011                                                          2012

Also, if you are a heterotaxy survivor or parent please look up The Heterotaxy Network on Facebook.  There is a group of a couple hundred of us and the knowledge level is amazing.  Sharing stories with families from all over the world has truly been inspirational.  

Me, Logan, and Logan’s Great Grandma

~Happy New Year!

So many kids have the Fontan and then their oxygen sats are high 90′s and everything is near perfect for years.  I hear talks of familes that only have to check in with cardiology every 3-6 months.

Although, I did not expect Logan to have as smooth of a Fontan as other single ventricle kids, I didn’t expect him to come home and be satting 68% either.  Only a heterotaxy child goes into a fontan satting 85 and comes out satting 68.  Talk about a complete let down.  I have come to realize (an accept) that Logan may never get to check in with cardio every 3-6 months and it has taken me 4 months to get there.  After Logan being on around the clock Oxygen and now Sildenafil (Viagra) and his sats still are very low, I have realized that I have “buck up” (as my Dad would say) and keep moving forward.  I am not going to have the huge growth spurts, catching up, and just taking off periods that others have after the Fontan.

Logan is still very small weighing in at a whopping 21 Lbs…

Logan is still unable to walk or crawl on all fours.

Logan is still very blue. He honestly hasn’t been this blue since he was 6 months old.

Logan is still not out of the woods….

We had a cardiology appointment on Thursday that I have only been able to tell a handful of people about.  Everything went well…except his sats were 77-78%.  There was a new student nurse that did his EKG, Pulse Ox, height/weight, so I knew this was going to take a lot longer than normal….Because she was a new nurse she happily let me take the lead on trying to get Logan’s Pulse Ox.  I told her that we needed to take our time with this because Boston says that PO (pulse ox) in the 70′s means we have to come back to cath and 80′s means we are okay.

(you can see in this pic that he is tingeing purple)

I spent almost 40 mn.  trying to get an 80%.  I tried both feet and toes, and his right hand.  I couldn’t get a damn 80%.  About two weeks ago he was looking bluer than normal and I POed him at home while he was watching a cartoon and it said 76-78%.  I just decided to bury my head in the sand and ignore it until his next cardio appointment.

There are so many things that could be going on I don’t want to speculate, hopefully he just grew some collaterals that can be coiled off.

I haven’t even told his doctors at Boston yet.  I don’t know if I have the stomach to go back yet.  And its winter, there could be RSV going around.

I have so many fears going thru my mind right now, that I am trying my hardest to drown out.  But I just can’t help but think, this is not the way Fontans are supposed to go.  And I highly doubt they will be able to close his fenestration this spring. Which is going to mean another whole year of low sats….worrying constantly about him getting a respiratory infection, and not being able to let either of my boys around many people 6 months out of the year.

So I guess now that I am making this post public, I guess I am now obligated to let his surgeon at Boston know what his sats are.  Don’t get me wrong, he knows we have been struggling and have been on oxygen and Sildenafil, but the last he heard Logan was low 80′s.

Taking a bit of a 180 here, there have been some positive outcomes of the Fontan that are hard to ignore.  First of all, Logan is much much happier.  He feels so much better.  I imagine this is because his heart is working so much less and he has mostly passive blood flow (as opposed to his heart having to pump it all out) and are you ready for this?  drum roll……..

He is cognitively ahead of his peers now! He knows the entire alphabet, counts to 12 forward and backward, knows all his colors and shapes, and is very adept at playing various puzzles on my iPhone!.  This is quite amazing to me, I had always thought that everything  he has been thru would undoubtedly cause learning disorders and cognitive delays.  The amount of narcotics, sedation, low oxygen, bypass, and severe heart failure, how could he not be cognitively behind?  Well, he isn’t! And a good friend of mine that teaches elementary school said he is ahead of many kindergardners.

I am so proud of little Logie.  I only hope that he stays happy being physically weak and mentally strong…I am dreading the day when I have to explain why he can’t be a baseball player.

Since I haven’t updated in so long I thought I would share some of my favorite pics of Logie since we have been home.

This is Logan shortly after his new-found love for coloring and crayons.

This picture makes me laugh for so many reasons.  Since his Fontan happened when he was a toddler everything that was done to him made him very angry.  I mean VERY angry.  So angry that going to the cardiologist’s office now really pisses him off.  I mean he just had a massive open heart surgery and now he has to go back to the cardio’s office every few weeks?  One time he threw my iPhone at the receptionists desk and shattered it.  But every time we go now, he doesn’t let anyone take his EKG stickers off.  And they do not come off in the bath.  I pick gross bits of sticky glue off his chest for days and days now.

First time at the Zoo.  He loved playing with the other kids.  This is a first for him.  He has never previously felt good enough to enjoy kids.

Ethan and Logan waking up after sleeping together on their “floor bed.”  I am completely okay with the fact that my children love to sleep on the floor next to us, in fact I love it.  That is Logan’s oxygen concentrated in the background.

First time at the pumpkin patch. He was terrified of the wagon so I carried him in my ergo carrier.  He would live in that thing if I let him.  He is very attached to me.

More coloring….pretty much the only thing that distracts him at the doctor’s office now.

Logan dressed up as a pumpkin for Boo At The Zoo.  The Mended Hearts Of NE Ohio got tickets donated to them and we all met up there.  A fellow Heterotaxy Mother started the chapter here and it has been great to meet more heart Moms.  You can see how insanely happy Logan was to be out and about.  Most were joking that they never thought I would let Logan come to something like this (germs) but we had some fluke 80 degree weather so I decided to go last-minute.  It was still a risk, but the joy he had was worth it all.

How cute did he look?!?

Tried so hard to get a pic of them together.  Tried for 45 mn. and then gave up.  This was the closest I got.

On of my favorite pics.

This was taken on our drive home from Boston.  We stopped for the night and seeing my two boys in bed together, was one of the best sights I have ever witnessed.

I have not blogged in a long time.  There were a lot of mixed emotions about the Fontan and coming home from it.  For 3 years now I have been told that for Logan to live he would need a Fontan.  I have been anticipating this Fontan for so very long.  The past 3 years have been excruciatingly hard and overwhelming, to be done with the Fontan now…..it feels wonderful! He isn’t out of the woods, we still need to get his O2 levels up, this spring they will attempt to close the fenestion in the cath lab.  If his pressures are too high and they are not able to, he will be stuck with these sats for another 1-2 years, until they try again.

Since we have been home and a million bricks have been lifted off my shoulders I have disconnected from this blog, FB, my phone, and I have been just trying to enjoy my family.

Thank you for being patient with my updates, I really needed a break from all this for the time being.  I do however post more on Facebook and if you would like to follow not only Logan but other kids like him, please look up The Heterotaxy Network on Facebook.

~Kristen

We had our last cardio appointment today with Dr. Patel.  A very good friend of mine who also has a child that has the odds stacked against him as well, gave us their good luck onesie!  J wore this onesie thru 3 surgeries and he is doing great.  I was honored to have his shirt passed down to us. 

He did a very thorough echo and everything looked as good as it can be. His Glenn and SVC look wide open with good flow.  All this pulmonary veins appear to have good flow.  His AV valve although slightly stenotic is working well with very minimal leakage.  His pulmonary artery in color appeared to have even grown a bit which is very reassuring.  The pulmonary artery is very important because the Fontan surgery is going to connect the IVC (Inferior Vena Cava) to the lower half of the body making pumping oxygen to the lower half much easier for Logan.  The Glenn connected the SVC (superior vena cava) to the PAs and once we have the IVC connected to he will have a Total Cavopulmonary Connection or a Fontan Circulation.

This is a very basic drawing of a Fontan that is done on a child with Hypoplastic Left Heart Syndrome.  If you take away the right 2 chambers from this drawing you would see what Logan has.  The Fontan is the “Tube Outside the heart” that connects the IVC. 

We had a much smoother appointment this week.  For one thing, Logan is very into counting right now albeit every number is ‘six’.  When he learned that EKG leads could be counted he decided they weren’t half bad…  “six, Six, Siiiix,  Siiiiiiix!” 

He weighed in at 9.7 K or 21 lbs and 33 inches in length.  Right now he is wearing 12-18 month tops and 6-12 months bottoms, well, and then 3-6 months socks and shoes.  Just to give you an idea about his size.

He is saying very random words right now….he says, ‘six’, ‘eat’, ‘hot’, ‘nuts’, and ‘hi.

He is really starting to enjoy Ethan.  They play together all the time and love taking baths together.

You can see clearly the oxygen difference between the two when they are together in the tube.

Logie is loves chasing balls.  He throws them, kicks them and then chases them all over the house and yard.

.

I just want to thank everyone for their support thru all of this.  I literally couldn’t go thru this without it.  I know that this will not be the end for Logan.  He is going to need valve replacements, pacemakers, and eventually a heart transplant.  The transplant could be in 6 months, 6 years, or 16 years, we have no idea.  Living like this is an incredible blessing and curse at the same time. A curse for the obvious reasons but a blessing because it has given us so much clarity.  Clarity on what really matters.  I don’t care about fancy preschools, where he falls on arbitrary charts compared to his peers.  I don’t care about college and if Logan will get a high paying job.  No.  All I care is that both my boys are happy, healthy as they can be, and have a good quality of life. Nothing else matters. 

Life is about this moment right here.  As long as we have each other, we have everything.

While we are in the hospital I will update his Facebook group much more often than this blog.  If you would like to join please look up Heterotaxy Syndrome- Logan Spyker on FB.  I can quickly post updates there from my phone.

Just wanted to share a quick video of Logie playing in his little pool!

He has been having so much fun with the nice weather we have been having.All of this exercise has really built him a little appetite too.  He is eating foods that he normally wouldn’t even try, he is loving mashed potatoes right now! We have a cardiology appointment this afternoon, just a check up, I don’t anticipate anything to have changed.  We are still looking at his Fontan around June 13th.  It is coming up really fast and I am trying my hardest to not dwell on it, but to just enjoy these last few weeks we have before surgery.  I anticipate that going thru this surgery will revert him back to the scared and timid boy he was just 6 months ago, so I am trying to get him outside and playing as much as possible. 

Here are some more cute pics…

First time in the sandbox.  At first he wasn’t so sure about the sand! Now he loves it and whines to go in.

First trip down a slide with Mommy of course! He loved it!

He looooooves to flip the pages of books and to be read to.  Ethan doesn’t have the patience to sit and read books, so I am loving being able to cuddle Logie and read books.  His favorite are Dora The Explorer books.  He is always so surprised to see Dora in books, he looks up at the TV and then back at the book, it’s too cute.

Still drinking out of a little baby bottle and scrunches his feet up like a newborn.  I am completely okay with this.  The bottle issue is not even on my radar screen as issues to worry to about.  It also is how I “secretly” give him his heart meds

I also wanted to remember Sweet Elise.  She passes away 2 weeks ago, and her loss was just devastating to me.  She has the same diagnosis as Logan and was born a couple of months after him.  Her Mom became one of my closest Heart Mom friends, and we watched in amazement as our two kids followed such similar paths.  This is a family that I have been in constant contact with for over 1.5 years.  Elise’s Mom Tessa, has provided me with so much support and encouragement thru Logan’s battles.  My heart is broken for Tessa and her family.

Elise went in to have a cardiac cath and her Fontan (third stage surgery), and never got extubated (breathing tube taken out) after the cath.  Her heart was too weak to go one to the Fontan.  Elise is Logan’s heterotaxy sister and she is greatly missed.  Elise is forever in our hearts….

                                       Remembering Elise

Not to mention he has been very very blue this entire week.  I thought to myself thank goodness we are going to be in Boston in a few weeks.  Then to find out this afternoon it’s not till June.

I haven’t wanted to Pulse Ox him (check his O2) because honestly, I don’t want to know.  But I thought since now it was going to be so long before his surgery I would look.  Ugh.Ugh.Ugh.  It said he was 65-70.  I haven’t seen the 60′s in so very long.  I feel sick.  I rarely have a pity party for myself because Logan is the one that bares everything, what do I have to complain about? But today, I have fallen into self-pity, anger, frustration, and sadness.  I am so pissed off that Logan has to be cut open again.  It’s so unfair.  So very very very unfair.  I am at the same time fully aware of how lucky we are to live in a time and place where he can have access to the best care, I know all that.  I just look at his sweet little face and his silly hair, and I just want to take his place so bad.  I wish I could just go thru this for him.

I told our pediatric cardiologist when I was still pregnant that my absolute worst nightmare was to get him to be 2-3 years of age and then lose him.  We can’t lose him now.  I am so scared.  Absolutely terrified.  The only relief that I feel in all this is that we Dr. Pedro Del Nido.  He could not be in any better hands.  That is what I hold on to.

There are so many scary things about the Fontan.  I don’t even have the stomach to get into right now, but it’s not just the surgery, there are all sorts of complications that can happen from the Fontan that are awful.

Just a really crap day.  I had no clue it would be so upsetting to get an actual date.

The emotional stamina it takes to get thru all this is just staggering.  I feel so beaten down.  I feel like I have been punched, kicked, thrown in the street, drove over repeatedly by a dump truck…and now someone is saying to me, ‘hey, get up, we have to go climb mount everest now.’

I rarely do posts like this, I try to keep strictly to the facts about what is going on in our life.  But this is the facts of our life.  I was explaining to a friend of my how precarious Logan’s life is.  I said its like being an Olympic Ice Skater.  I feel like for the past 2 years we have landed triple axles, and now we are coming up to the last one….

The amount of time, research, and ABSOLUTELY meticulous care it took to get Logie to wear he is right now would really surprise most everyone.  Logie didn’t get lucky, I fought like a crazed lunatic, to get him to the best surgeon/hospital that I could find that could fix him.  I was told twice Logan needed surgery at a different hospital and only because of the meticulous research I had done, did I know to say NO to those surgeries.    It’s because of me that he is alive.  I know that and everyone tells me that.  Well, what if I am missing something now?  What if I didn’t read some new research?  What if there is actually a center in Asia that could do better?  What if we waiting a year or two more and there is some new technology and he wouldn’t need the Fontan?  What if that surgeon in California that is growing stem cell arteries could do something for him?  It is so much pressure.  So so so much crushing pressure.  I feel at my absolute very weakest and I am being asked to perform my last triple axle…. I am skating around that turn, slowing down to prepare…..

See what  I mean about him being the cutest thing ever?  I am not biased at all!!!

Logan has made so many strides lately!  He is doing just terrific.  One of the greatest things that we ended up doing was hiring a nanny.  This was tough to do because its hard to turn over control, and it takes a lot for us heart Mom’s to trust anyone with our kids but it turned out to be the exact thing that everyone in our family needed.  It is allowing me to work more, which has been very good for my mental health, and it has introduced someone to Logan that he doesn’t associate with any of his medical issues.  Our new nanny has never given him meds, never seen him in the hospital, and never taken him to the doctor.  Logan trusts her! And the best thing of all is that he has started to eat for her!  it is very interesting because he still will not eat for me and he actually stops eating if I am in the room. 

He is verifying that this is all psychological and not a physical issue. So I am making a point of not asking this nanny to ever give him medicines or be involved the his health issues, because he trusts her!

I think that is has been fantastic for him to be around a caring person that he feels 100% confident won’t try to force him to take medicine, force him to put on a pulse ox, or take him to get boo boos at the doctor.  He has made so many strides since the arrival of our new nanny that it has made me realize how this whole journey has really affected him mentally. 

(love being read too)

Now that he is getting more nutrition he is able to do physically advance as well.  For the past few months he had been extremely frustrated because although he was mentally like a 20 month old, he was stuck physically in a 6 month old’s body.  Him being able to move and explore has really opened up a whole new world for him and he is so happy about it.

He is sitting up very confidently and has figured out how to go from sitting to laying and vice versa.  He is so so so very happy at this new ability.  He feels like a real person now!

With his new-found independence and strength, going to the cardiologist has gotten to be a bit more of a struggle.

(EKG and Blood pressure)

Last check up was good.  O2 is is decent (mid to upper 70′s) sometimes hitting 80 sometimes hitting 70.  He definitely looks blue when he is moving around and playing.  His feet get very blue, and the area around his mouth and eyes as well. 

He currently weighs 9.1 kilo (20 pounds) and is 30 inches in length.  He is the sweetest little thing you could ever meet.  I wish everyone could meet him. 

The last week we had a stretch of weather out of the blue where it was 75-80 degrees.  Logie had the time of his life.  Last summer his body couldn’t handle heat and he would just sweat like mad if he was in the sun. 

(he didn’t eat these apples btw….)

(we actually had to bring this picnic table inside because we couldn’t get him to come in without it)

Ethan is also enjoying Logan now that he is able to interact with him more.  Ethan almost has a bit of a playmate!

Still working on figuring out a surgery date.  Couldn’t tell you if its going to be April or June at this point.  I am hearing something different from everyone that I talk to.  Trying my hardest to figure all that out now.