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Evan did so great while waiting for the anesthesia team to take him back.  There was a bit of a delay and they got him at about 1.  A surgical nurse practitioner updated us at around 3 and said that so far everything was going as planned but that they had just begun the actual surgery.  Dr. Hirsch commented that there was a decent amount of scar tissue.  She expected this and told us this would be some of the most tricky part of today’s procedure.  It’ll be the 3rd time opening up his chest.  We’ll get another update around 4:30.

Thank you to the Wilson family for stopping by.  I hate that you’re here too but I’m so glad to have friends like you.

Evan is having the bi-directional Glenn aka Glenn aka Hemi-Fontan today.

Here is a quick 26-second video showing what he will have done today.

 

Here is the full 9:25 video from which that clip was extracted and has more details.  Evan doesn’t have HLHS but the same operations apply to his condition as well.

Please be patient with updates.  Among the great things with the new hospital are zero cell phone reception anywhere and spotty (at best) wireless internet.  I’ve lost connection 6 times during this post so I hope it makes it. 🙂

The first case is running late do we’re waiting in pre-op.

Always with that foot in the air. 🙂

I haven’t prayed much throughout everything.  I don’t know why that is.  Well, I do know why but some things should stay personal.  I cannot thank everyone enough for all of their prayers, wishes, thoughts, vibes, everything positive.  Right now I do need to pray several prayers.  I am a very worried mother and I’m sure I will be for the rest of my life.  Please join me in prayer, however you pray.  I need to meditate on these words and this will help ease my mind to get a few hours of shuteye…

Dear God, please guide the surgeons, nurses, assistants, and specialists.  Guide their hands, heads, and hearts.

Dear God, please don’t let tonight be the last time I tuck my son in to bed.  Please don’t take him from us.

Dear God, please give Evan back to us just as happy and full of smiles.  I want my happy baby boy back.

Dear God, please don’t let this weekend be the last time Evan hangs out with his baby friends.  Let them grow up together as children.

Dear God, please give Evan a full nights rest so he will be in the best form to go into surgery tomorrow.

Dear God, please allow this hospitalization and procedure to go without complications.  Please cut Evan a break.  I will gladly take it if you can spare him.

Dear God, please fill my heart with patience and understanding when people tell me, “Everything will be ok.”  Please quiet my tongue from saying, “So then do you want to change places with me” and know that they just don’t know anything else to say.  What do you say?

Dear God, please lift the load of worry from my heart and let me release in my trust into you.

Dear God, please help Evan’s father just as much as me.  Provide comfort to extended family and friends as well.

Just wanted to leave a quick note to let everyone know that Evan’s heart surgery has been rescheduled. We will go in for the heart cath tomorrow morning and the surgery will be on Tues. January 3.

Here’s my understanding of what is going to happen tomorrow:

Arrive at Mott @ 7AM
Meet with a nurse practitioner where we’ll go over some pre-procedure testing including:

• anesthesia (he needs to be sedated for this echo to make sure they get perfectly clear pictures)
• echocardiogram
• chest x-ray
• EKG

We’ll go to the cath lab at about 10AM and this will take 2-3 hours. Heart catheterization, if you don’t know, is a procedure in which a catheter is placed into an artery and moved into the heart to look (it has a camera on the end) at the chambers, valves, etc of the heart. Pressures and flows can be measured and if necessary samples can be taken of blood or heart tissue. If you would like to know more you can read about it here. After the cath lab Evan will be moved to recovery. Recovery takes about 4 hours, after which we will come home.

Please continue to keep Evan in your thoughts and prayers as he goes in for another procedure tomorrow and surgery next week.

My family celebrates more on Christmas Eve so we loaded up the car with baby stuff, gifts, and dogs and headed on up.  First stop was Grandma Nan’s house.  We got there early and beat the rush of ~20 people who would be showing up.  Cousin Morgan helped to open Evan’s presents while Aunt Kate got to get in some cuddle time.  Sadly we could only stay for a short time due to our schedule needs and we proceeded onward.

 

 

Next stop was Holly Wood… ‘s house.  No, really, my Grandma Jo named her daughter Holly Wood.  Cool, right?  Ok technically she is Holly Wood Webber but details… Evy received even more wonderful gifts and mostly just sat there and took all the sights in.  He is definitely one to observe first, analyze data, and then act.  As you can see, we had more fun opening them than he did.  Next year he should be able to go bananas.

 

 

Christmas morning had me dressing Evan in a ridiculous outfit and I got one of the funniest “Woman, are you for real” looks he’s ever given me. Ahahahahahaha.  I just really love BabyLegs and have a couple pairs.  It is hard to get Evan to wear onesies due to the mickey button.  So if you don’t wear pants, it makes it easier.  Besides, who doesn’t want to see those sweet (albeit purple 🙁 ) toes and chubby little thighs.  Evy also checked out his first candy cane.

 

 

 

 

That afternoon Will’s family came over to celebrate and feast.  Evy opened his gifts from Mom, Dad, Nana and Papa.  And by opened I mean that he slept in his swing while we opened them for him.  Even as a child, going through this pile would have taken some time.  You think he is spoiled?  Nah…. just loved a whoooooole lot.

 

 

 

Uncle PJ and Grandma Nan came down to eat with us as they had a limited amount of time the previous day.  It was so nice for Evy to meet his uncle as he lives in Florida.

 

 

 

 

 

 

And finally here is Evy modeling the hat and pants Grandma Nan gave him while getting ready to go visit some friends.  Baby Gap in need of a model?  Because I’ve got one cutie pie on my hands here.

All in all we had a very tiring few days but absolutely worth it to give Evan the best First Christmas possible.  It is only the first of many to come!  Thank you everyone for your help, understanding, generous gifts, and love.

It’s been a few weeks since we’ve made a post… sorry about that.

Here’s what has gone on the last few weeks…

Since the G-tube surgery Evan has continued to gain weight very steadily. In the last two weeks he’s gained a pound. His current weight is about 14 lbs 12 ounces. Feeding orally has unfortunately gotten worse. We think it’s from the constant puking that he’s decided that food in mouth = puking and he doesn’t want any part of it. We’ve stopped trying to feed him orally all-together as to not reinforce whatever it is that has made him hate it so much. On Wednesday we had our first visit with occupational therapy. The therapist evaluated Evan by watching his reactions when she touched his face and mouth with her gloved hands. He was not having a very good day, worse than most and when she put her finger in the front of his mouth he started retching and puked. It was at that time that she told us that Evan was the most oral averse child she’s seen. That wasn’t very comforting to hear but at least it allows us to put in perspective how hard we’re going to need to work to fix this. We’ve temporarily switched to straight formula wondering if something Sarah eats is upsetting his stomach. So she’s going to give up dairy in the meantime and if the change in formula works we’ll try the ‘dairy free’ breast milk. If the formula change helps and the same is true of the dairy free breast milk that would be great. If Sarah’s diet change doesn’t help and the formula does then I guess we’ll switch to formula but that would be a real disappointment. Sarah works very hard for that milk… pumping 5+ times a day, the endless pump parts to wash, lugging it around with her wherever she goes, always having to schedule things around pumping. It would be a shame to see the 2+ months worth of milk in the freezer go to waste. Spending $235 per month on formula vs the zero we spend now is another negative.

 

We had a follow up appointment in Ann Arbor with Neurology for the stroke/seizures that Evan had back in August. Dr. Lieber was very happy with his progress, he didn’t see anything out of the ordinary. So far Evan has developed very well, and we’re not seeing any negative impact of the brain injury. We’ll follow up with them again in 6 months.

 

 

 

 

It’s Christmas time and what is a must for kids at Christmas? Sitting on Santa’s lap of course! Our friend’s brother dresses up as Santa at Christmastime for events – and since he had the costume laying around he thought he would offer to be our personal Santa so that we don’t have to lug everyone to the mall.  It was very kind of him to drive from Grand Rapids (yes in costume) to walk into an ambush of babies.  Getting 5 kids ranging in ages of 4-13 months in a picture with Santa is no small task. Shear chaos, but it was fun.

 

 

We’ve been seeing the cardiologist every two weeks and so far everything has looked great. Our appointment two weeks ago was no exception, Evan’s oxygen saturation (sats) were in the low 80’s which is great given his heart condition. After leaving last time and not having an appointment for another 2 weeks we really thought things were looking good. If you would have asked me yesterday I would have told you that I thought Evan’s surgery would not be until early February.  Today’s appointment didn’t go as well. His sats were in the mid 60’s today. What gives? Well, he’s a growing boy… His shunt, only 3 millimeters wide can no longer supply enough blood to his lungs to keep up the level of oxygen in his blood. As he grows it’s only going to get worse. The cardiologist performed another echocardiongram to look at his heart function and the shunt, both of which were good. Then she told us that she was going to call the surgeon at U of M and let her know that it was time for the next surgery. We were taken back to say the least. We left the appointment with heavy hearts and lots of dread. I went back to work and attempted to get some things done but all I could think about was my beautiful little boy and what he’s going to have to go through… again. A short while later we got a call. Evan goes in for  a heart catheterization  on Jan 5th and the surgery is scheduled for Jan 6th. Less than 2 weeks away. 🙁