Category: Weight gain and feeding issues.

Holiday Update

We had a terrific Christmas this year.  The last two years I wasn’t sure if Logan was going to live or die and it was pretty hard to really enjoy them.  This year I had a ton of Christmas spirit and really enjoyed the season.  I don’t know what is going to happen next year but this year I had my two boys and they were both feeling well and happy.

I will just share our holiday season with some pictures.

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Christmas Eve

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Ethan my 4 yr old Son.

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

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Playmobil Advent Calendars

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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 😉

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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.

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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.

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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

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

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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.

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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.

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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

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What a difference a year makes!

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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.  DSC03805

Me, Logan, and Logan’s Great Grandma

~Happy New Year!

 

 

 

 

 

 

 

 

 

 

 

 

 

Countdown to Surgery- The Fontan

I am a disaster.   We are leaving for Boston this weekend.  I would give anything in the world not to go back.  This life is so very unfair.  I can’t believe he has to go thru this again.  We have decided to rent an apartment in case we are there for a long period of time (if not…we’ll we will break the lease) but we have decided to take our other Son and our nanny because we think its important to keep the family together. We are leaving this Sun for Boston stopping along the way and finishing the journey on Monday.  The cardiac cath will be done late in the week and surgery is scheduled the following Wednesday. 

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.

 

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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.

What is Logie up to?

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.

Big Week For Logan

So Logan had a huge developmental week! Just in one week, Logan started saying HI, clapping, and sitting up unsupported!  It is fantastic to see him developing and he is so ecstatic to be able to do these things.

He also tried a few new foods which is encouraging.  He typically only takes a few small bites but his willingness to at least try makes me very happy.

Trying some Ice cream…

Eating some french fries….

Logan continues to have his RSV shots monthly (fun times….nurses coming to the house with big needles!)

He had a cardiology appointment yesterday. 

I am having massive anxiety about his next steps.  I am terrified of the Fontan surgery.  This surgery is going to connect his IVC (major blood supply to the lower half of the body) directly to his pulmonary arteries.  This way he will have better oxygenation to his lower half of his body.  Currently his top half (waist up) is oxygenating at about 80%.  His lower half is oxygenating at about 72%.  The other benefit to having the lower half connected is that blood that flows thru the liver gets into circulation.  This is important because there are enzymes in the liver blood called “hepatic factor” that help keep collateral growth in check.  We know Logan has the ability to grow very extensive and invasive collaterals if his vasculature is stressed so it is important to get this “hepatic factor” into circulation sooner rather than later.

(getting ready for his EKG, weight check, Pulse ox, and blood pressure)

Really angry about the EKG leads…he is starting to hate them. Typically he hates having the stickers taken off but now he just hates the whole process.

Took a while to get them all on because he pulled them back off so quickly.  We went with the stick’em on quick, cover with blanket, and distract with IPhone method!

Logan’s echo went well.  His PVS has not returned! (yay!!!) his Glenn is working well, his heart is squeezing well, his valve has no regurgitation (thanks to Pedro Del Nido, it had been severely regurgitating), and his pulmonary arteries grew.  although his PAs grew they are still small for his age.  They are considered mildly hypoplastic.  Not great news for his Fontan.  Dr. Patel wants Logan to have a cardiac cath done in early spring to check pressures and collateral growth.  We will have that done in Boston and then based on that data we will determine whether he is going to have his Fontan then.  More than likely he will.  BIG SIGH….hard to even think about him having another OHS.  The only positive aspect is that he is healthier than ever before.  He got thru tough surgeries while in severe heart failure. He is so healthy right now, so that can only make surgery go smoother. 

I will leave you with some more cute Logie pics….

Another fantastic Silly hair pic!!!

Getting ready for a bath…

Logan Update

 

I have not been meaning to keep everyone in the dark about Logan and his progress.  I don’t really know what is going on with me.  I think after 18 months of this being my reality its still really tough to write about him and his progress (or lack their of).  When I found out that his oxygen levels were a bit higher and that we could hold off on the Fontan for the winter, it was the biggest gift….I thought.  But it has just given me more time to worry about the Fontan.  It is going to be here in a blink of an eye and everyday that Logan gets bigger and stronger and shows more and more personality his next OHS is going to just get tougher and tougher and tougher. 

It literally makes me sick.  It makes me sick to think about them having to re-cut open his chest (his nearly perfect incision is barely visible right now)  It makes me sick that he will have to spend hours and hours getting IVs, lines, and blood draws.  About 4 weeks ago I had to make an ER trip for myself, I was having a horrible asthma attack (thanks autumn…) and had to get an IV of steroids.  When the nurse went to go get the stuff to start the line I held my breath and prepared myself for a big ordeal.  It wasn’t…it took 2 mn.  and it hit me how different the perspective is.  For those of you that haven’t experienced this getting an IV, or PICC line in a baby with a complex heart condition (bad veins) it HORRIBLE.  It takes hours.  It takes 3-4 people holding your baby down while they stick him over and over and over again trying to get access.  Most of the time with Logan we would go thru 2-4 people before someone could “get him” many times they would have to use an ultrasound machine just to find his small frail veins. 

I just cannot believe that we have to go thru this again. 

But right now…Logan is so happy.  He is getting less and less scared of people every day.  He even lets other people hold him now!  He jibber jabbers constantly which is the sweetest sound to my ears.  He still cannot sit up unsupported or crawl, but he has compensated and scoots on his back.  He gets around quite well this way.  He loves to sit in his high chair and “eat” dinner with us.  He more or less pushes a few crackers around but loves feeling like a part of the family. 

His brother Ethan just turned 3 this last week.  He is an amazing little boy with an amazing talent for guitar playing.  I know what your thinking…but I am serious he actually plays.  Scott is teaching him notes!  Ethan is started to understand more and more about Logan as well.  Last week we had a new babysitter here and one of the first things he did was lift up his shirt, point to his chest, and tell the sitter that Logan “has boo boo on chest”  I had to explain to Ethan that tomorrow a doctor has to come (really a nurse) to give Logan a boo boo on his leg (his RSV shots)  Ethan is very upset by all this and doesn’t want Logan to get anymore boo boos.  Its just heartbreaking. 

I wish too…that Logan didn’t have to get anymore boo boos.

Ethan with his prized Green Guitar that he got from my parents. 

And Ethan taking a break after a  jam session with Dad!!!

Now for Logie Pics….highlights from the last 2 months

 

Loves that he can now sit up in the Bumbo. It has given him a whole new perspective on life. 

He loves to sit at the table.  This is him “eating” he maybe eats 3-4 tiny bites of a cracker.  I have found that he will eat a handful of goldfish though.  I have tried all different types of foods and he still is being stubborn about the food being dry and crumbly. 

About 4 weeks ago he grabbed a sippy cup from the couch and just started drinking it.  Luckily I had my handy IPhone near by and actually caught the moment!!! His first time drinking from a sippy cup.  Even with the new sippy cup he will only drink apple juice at room temperature.  Nothing cold nothing warm.  Nothing too sweet, nothing thick (tried smoothies and milk) he is VERY finicky when it comes to textures, flavors, and pretty much anything new.  Starting to wonder about Sensory Processing Disorder

 

 

 

In turns of sleeping…that has gotten a little better.  As he is starting to eat more at a time (10 goldfish instead of 1) he will go a little longer in the night without getting hungry.  I think we are just stuck in the newborn eating/sleeping schedule because he doesn’t eat food.  I mean that is why we start our babies on cereal and food is to help them sleep thru the night…please Logan just eat!!!

In terms of physical development he is still like an infant.  But mentally he has turned into a little boy and it is so exciting to see his personality come out.  He loves music like his brother and gets so excited and moves his head back and forth whenever something comes on. 

Logan has an echo on Thurs…PLEASE let there be no surprises….please… oh and almost forgot to mention.  He weighs in at 18.5 pounds now.  Not sure if that is good or bad.  We will find out on Thurs.

 

The Food Battle Continues….

So, I have not been updating lately.  I guess life has just been too crazy. 

Logan is doing GREAT!!! I feel finally that for the first time in his life he is a (relatively) normal baby that is happy and playful.  His oxygen levels are definitely up and it is making a huge difference in his quality of life.  He isn’t sleeping all day anymore, and actually he has only been taking a morning nap and afternoon nap lately.  He is so much more interested in things.  Things that used to frighten him are now interesting and he is much less scared of people. 

He still doesn’t let hardly anyone hold him but he won’t scream bloody murder if a stranger looks at him or tries to get near him (just not too close though…)

He is not sitting up on his own yet, although he is getting so close and can now sit in a Bumbo (a soft little seat that gives baby’s support) and is really enjoying this new view of the world.  Most people who meet Logan ask if he is 8-10 months old.   I do agree that is about what he looks like physically.  He is still in 6-9 month clothes and 3-6 pants.  Believe it or not though, he has officially staked his claim on the weight chart.  He is registering in at about 1-2% but I will take it!  Much better than his previous -45% place.  For height he is about 20% and I have to say it is all in his head and torso.  He still has puny little legs that are still curled up most of the time. 

Logan still does not eat food.  I am okay with this.  He has an incredibly small stomach capacity (which is  a know heterotaxy thing) and is not comfortable with the feeling of anything touching his throat.  Before in this life things that touched his throat were NG tubes and ventilator tubes, so he has a pretty strong visceral reaction to things being swallowed.  He is okay with food that almost melt in his mouth.  Rice starch biscuits are his favorite.  He occasionally will nibble a tiny piece of cake, but this airy/starchy/dry texture is the only texture he will allow near his hand or mouth.  If I hand him something that is cold, slippery, wettish, warm, surgery, cheesy, or any other texture other than room temp and dry, he acts completely repulsed by just the feeling in his hand, let alone put it in his mouth.  Just so you know (and everyone asks this…) yes! I have tried pasta, fruit pieces, vegetable pieces, cheese pieces, chicken, egg, toast, pancake, waffles, french fries, cereal, pudding, pediasure, chocolate milk, ice cream, yogurt, and anything else you can think of that seem like it would be ‘baby friendly.’  He literally only wants rice biscuits, cheese puffs (but not the really cheesy ones), and these new vege stick things.  That Is It. 

occasionally I will get him to nibble on various foods…I have had luck with a cucumber slice, a french fry, a cheese it, and a green bean.  However, as soon as he tries to swallow these ‘non-melting’ foods he begins to gag, choke, and then vomits.  And then vomits some more.  And more and more.  I am not going to stop trying though, although I am taking things very slowly because it is a very fine line between encouraging and in a positive way and reinforcing his negative emotions with food. 

I am secretly very happy that no one wanted to attempt a Gtube on Logan.  Although he may have put on weight quicker I think that it would have perpetuated his eating issues and I have heard nightmare stories of 4 and 5-year-old that still don’t allow food in their mouths.  Slow and steady is what is going to win the food battle with Logan. I think it is hard to see how skinny he is unless you see out of clothes.  He has no little baby rolls just skinny arms and legs.  Also, doesn’t his incision look great???  Dr. Del Nido…LOVE YOU!!!!

If there was one picture that could describe how he is doing right now…it would be the following.  Just two months ago Logan would never have smiled like this.  He smiled occasionally but never with that much joy.  Just a short two months ago, he was scared of taking a bath, he was scared of all people, he was scared of new noises, textures, places.  He slept all day long and needed to have his blanky, binky, and his swing just to feel secure. 

Now today at 15 months he loves the bath.  He loves going places.  The wind blowing on his face doesn’t make him cry anymore.  He is somewhat more tolerable of people (just don’t touch me or get too close  please…. 🙂 and overall for the first time ever Logan is  joyful.  You can see it in this picture…