‘The Mars Effect’

It was so easy to take for granted… if I do everything right I will have a healthy baby.  As we soon found out this is not true, Marshall was diagnosed at birth with congenital heart disease. ‘The Mars Effect,’ we found, is a complex constellation of defects and rare anomalies that seem to defy typical description.  Where did this kid come from?! His constellation of heart defects include Hypoplastic Left Heart Syndrome, Total Anomalous Pulmonary Venous Return, Pulmonary Stenosis, Double Outlet Right Ventricle, and there’s more.  Check out the What is the Mars Effect?  tab above for descriptions. Sounds simple enough, congenital heart defect…  Many people survive with CHD without any medical intervention.  Others do quite well with surgical procedures to repair.

 

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Summer Time!

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Rocked it!

100_4194Marshall celebrated his first last day of school today :)  He told his teachers his favorite things about school this year were learning the letter “P” and dancing.  Next year

 

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Thank God for sunny days

Mars is 11 months post-op and we just got home from his cardiology check-up.  I was expecting him to have bloodwork, EKG, and a holter monitor in addition to his echo.  But he got away with just an echo.  I was a little disheartened by the echo report. Dr. K, who is now Dr. M, reports his valve leakage has increased from mild to mild/moderate and heart function not quite as strong as his last echo.  I was expecting to come out of there with a glowing report so I’m feeling a bit like getting punched in the stomach.  

On a happier note, Marshall has grown a whole lot with his height now on the growth charts at a whopping 8th percentile! He’s grown almost 3 inches in the past 6 months! 
Mars goes back up in 6 months just after his tentative Make-A-Wish trip to Florida. 

It’s a beautiful day in Southwestern PA and Mr. Marshall has t-ball practice this evening.  

 

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Happy Four Year Old

It’s been so long since I’ve updated.  I guess that shows how well Mars is doing these days.  He’s in preschool with kids his age, learning, and playing, and enjoying life.  It’s just amazing to me that 9 months ago I was scared to death my sweet little boy would never recover. That he would be traumatized forever by the battles he was fighting in the hospital.  And now, he’s side by side with other 4 year olds and you would never guess the mountains he’s climbed and the resilience he’s shown.  Here is a picture of a note from his teacher that was attached to his first report card❤  

 
We are just so proud of him! So very thankful to have him in our life…  God bless. 

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Happy 4th Birthday Mars!

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6 months off!!

Marshall had his cardiology check up today.  He did GREAT, his oxygen sats read 97, 98.  Dr. K thinks his fenestration is now closed. This happens if the pressures in his heart are low enough and blood isn’t being shunted through the fenestration.  It’s good news as long as he doesn’t develop any effusions.  So far it looks like he’s tolerating just fine.  If he needs his fenestration in the future they can make one and put a stent in via cardiac catheter but hopefully that won’t be necessary.  He’s has grown over an inch and gained 2 lbs since our last visit in June…  Whoa!  I thought he looked bigger!!!  So he won’t need a checkup again for six months.  At which time he will get the whole shebang; EKG, echo, blood work, and a new test called a holter monitor.  I’m not sure exactly what this entails I think it’s like an EKG he has to wear for 24 hrs.  He will now have this done yearly for life.  I remember reading stories about single vent kids wearing these to school…  Looks like Mars will be an ol pro at this test as well.  We are very happy Marshall has completed his journey of the treacherous terrain known as Mt. Fontan, now life continues with all the strength and wisdom he’s acquired on this trek.  Thanks for reading and God Bless!!   

 

Eating cafeteria cake yummm

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First Day of Pre-School

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It’s called HLHS

Marshall is getting quite hep to his chest scar and realizing that most people don’t have a “zipper” like he does.  He knows Uncle Bill and Gammy both have chest scars but I felt like I needed to explain to him where his came from.  It was affecting to see the way he listened when I told him he needed his heart fixed as soon as he was born.  And, that he was born with HLHS.  This isn’t the first time I’ve told him, as we talked about everything he went through in order to prepare for the Fontan.  But, this time he was really listening…  For our family, we’re used to little kids having a giant scar down their chest, in fact it looks quite strange to me to see a kid Marshall’s size without one! But when we see all the other kids at the pool and swimming lessons it’s easy to see the magnitude of what he’s been through.  I tell him all the time there are lots of kids out there that are just like him and have been through the operations like him.  Draven, Luka, Zoe, Megan, Simon, Cameron, Evan, and lots of other boys and girls who have HLHS.  I know he doesn’t comprehend everything I’m saying to him but I know he will be well versed in his heart condition.  Marshall continues to amaze me everyday with his strong will, it’s absolutely unprecedented.  God bless.

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Looking back from the beginning

Looking back at Marshall’s Fontan I feel very naive.  I was reading the books and doing the play therapy to try and prepare him for the hospital stay and surgery.  I took my reiki classes and placed crystals around his room.  I thought all these things would make the whole event go more smoothly, maybe even offer come comfort.  Honestly, after things started to go downhill with the chest fluid and chylothorax and the vomiting I lost all the patience and calm I needed to perform the reiki on him as often as I should have been.  I managed to give him probably 30 minutes or so of treatment during his ICU stay, thankfully I had friends sending him distance reiki.  The crystals did offer some solace, making me feel like I had some unspoken force working for him.  As far as preparing Marshall for the events to take place he was still very confused and miserable during the first week after the surgery.  I found the most helpful thing for him was for me to explain everything very calmly and have him practice calming down during bandage changes and iv medications as these were the most unpleasant occurrences for him.  Telling him ok they are taking your blood pressure, or it’s time to check your temperature, or I’m just going to change your diaper seemed to calm him.  Rather than just letting him figure out what was going to happen next.  Even as recent as yesterday Marshall still likes to play doctor, he likes to give me shots and play x-ray and echo machine.  I think it’s his way of dealing with everything he went through so we play as often as he likes.  He often talks about the tube in his arm and tummy and asks if he has to get shots.  It had to be such a traumatic experience for him I know it was for me and I honestly know I couldn’t have handled it with the grace that Marshall exhibited.

Yesterday was a really amazing day for Marshall and his brother.  They RAN around and played together all day.  They played tag, they played hide and seek, they were up and down the stairs non-stop all day.  This was really the first day that Marshall has had the energy to keep up with his brother and I think Wyatt was quite surprised to have his brother wear him out a little bit.  It was absolute magic to watch.  It also gave me a glimpse of what an amazing brother Wyatt has been for the past three and half years, can you imagine how hard it must be to have a little brother you want to run around with and he just physically couldn’t do it.  Well, it looks like those days are gone.  Yesterday marked Marshall’s 7th week post-op and the difference at this point IS astounding.  I was waiting and waiting for this moment, when we could clearly see the improvement the Fontan made in Marshall’s stamina.  Now when he gets his normal diet back I think it will mark another huge improvement in his energy level.

We got back up to Children’s a week from today for a chest x-ray and if it’s clear he will be oked to transition back to a normal diet.  Two weeks later he will have another chest x-ray to make sure the fat isn’t building back up in his chest cavity.  At that point we will start weaning his furosemide.  He has already been off of the second diuretic now for a week and he’s doing great with that.

I’ve been looking around a preschools as his cardiologist oked him to start in the fall.  He’s been really working hard on his potty training and his speech has been improving greatly as well.  A huge part of transition is going to be for me going from being a caregiver to a mom with two healthy, happy kids.

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Awesome progress!

Yesterday was Marshall’s first post-op appointment with his cardiologist.  He had an echo, x-ray, sutures removed, and EKG.  He did fairly well with his echo, we had a really nice echo tech named Dave who’s one of my favorites, and the results came back good.  Then he had to have his EKG which is his absolute most unfavorite test because of all the stickers, we finally got him through it though and the results were good.  I had the nurses just leave the stickers and told Marshall we could just take them all off at home later he was already done and ready to go at this point and we still had a lot to get done.  Then Dr. K came in and listened to him and removed his sutures.  They called a Child Life friend in to help distract him while she took the stitches out and it happened to be one of Wyatt’s friends from the Sibling Center that we’ve known from the beginning so it was nice she had a chance to meet Wyatt’s little brother and catch up with us. After he got through that he was ready to go get his brother and have a salad in the cafeteria.  He did really well with only being able to have healthy food and didn’t even ask for fries or dessert.  After that we headed to x-ray and had to remove the EKG stickers to get a clear picture of his lungs on the x-ray :(  He was pretty traumatized by that but honestly I was glad to have the help from the x-ray tech and we got to go home almost sticker free.  When we finally made it home Dr. K called and said his x-ray looked wonderful the best one yet and we were able to take off a dose of diuril from his medicine routine.  If he does well with that being taken off I can take the diuril away completely in two weeks.  In four weeks we will see the doc again for a chest x-ray and see if his lungs and chest are still clear.  If so he can transition to a regular diet.  Two weeks after that he will have a repeat x-ray to make sure everything is ok.  So there is still quite a complicated road ahead but he’s doing great and making awesome progress.

Next week my mom will be in and Marshall’s swimming restrictions will be over so we’re hoping to get the boys to Idlewild to swim and have some fun.  And swimming lessons can start pretty soon too.  I’m also on a hunt for a preschool for Marshall as his doctor said he’ll be clear to go to school this fall YAYYY!!!! He’s never been given the ok to go to a daycare of anything before this so this is great news for us🙂

That’s all for now.  Thanks for reading and as always thank you for your prayers.

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