Cameron Chase is now 16 months old, he was a handsome little baby, A head full of Dark hair (which at the time we thought it was gonna stay dark and be curly). I couldn't believe that after almost 6 long years of wiating and praying I finally got to be mommy to this special little baby. God had answered our prayers.. so we also knew that if we prayed hard to him again that just maybe he would answer our prayers again and help Cameron overcome the challanges of having hlhs.
I guess before I get to far ahead of myself, I should say that we found out about Cameron's special heart at my 21 week level II ultrasound. We are one of the lucky ones who knew ahead of time, but believe me it didn't make knowing easier... It gave me 18 weeks to think non stop about my son and his broken heart, to cry myself asleep as I thought about Cameron's chances of surviving such a severe CHD, to watch HLHS youtube videos and cry my eyes out because I was overwhelmed and terrified of the unknown future! It gave me more time to figure out the "best" way possible to tell my then 10 & 6 year old daughters about their sick baby brother.
It was never easier knowing, however it gave us time to get some details & plans in order.
We had pretty much all the details & plans done by the time I had Cameron.
Girls would live at their Aunt Tammy's and spend the weekends at the hospital with us & Cameron. Virgil would be off work until things would look "up" and then when he would go back to work I would have his sister Shelly keep me company at the hospital and keep me calm.
We would weather thru this massive storm, we would TRY to stay strong even though we knew it wasn't gonna be easy.
So October 15th Cameron had his first open heart surgery, he qualified for the hybrid instead of having the traditional norwood. He sailed through that surgery with no major complications, In no time Cameron would be moved from the picu to the stepdown unit, that's where we we had our stuggles. Eating, Cameron wasn't to sure about the suck swallow breathe pattern,
It took Him three weeks to get the pattern down, but when he got it, boy you better have been ready with a bottle!
I will never forget the day when they told us Cameron was ready to go home, I broke down in tears. tears of happiness, tears of being overwhelmed again and tears of relief. Finally at five weeks old, my little bundle of joy would be coming home to me, to Virgil and to his two big sisters Desiree & Megan, and to all the people who cared about him! it was a dream come true!
For the Novemeber of 09 to April of 10 We went to weekly cardiology appointments in Burnsville one week and the next we would travel an hour or so to the U of MN Amplatz. Cameron would have weight, o2, blood pressure and length checks, followed by his echo and a visit from Dr Dan Gruinstein.
from November of 09 till April of 2010 Cameron has had 6 heart caths, one of those didn't go well and a couple of those he coded on us as I was holding his little hand or talking to him tell him how much we were proud of him & how much we love him. Thankfully they brought him back to us each time,.
Cameron has had a blood clot & aneursym in the same groin, he has had to be on heprin treatments for that, thankfully the aneursym shrunk down after having numerous clotting treatments, he still has the blood clot in his groin, but we deal with it. We do a daily baby asprin treatment.
April of 2010 Cameron returned to the U of MN Amplatz for his bi-directional glenn surgery.
That was scary, the day of his surgery we get called back to a room to talk to Dr Saint Louis, when they went to crack open Cameron's chest they tore Cameron's heart, not their fault at all, Seems Cameron's heart grew attached to his sternum bone so when they went to open him up, his heart tore.
So they stitched up his torn heart and closed up his chest, and took him back to his room to recover.
The next day they went ahead with his surgery, he did good during the surgery, but after was a little touchy, When they went to move him into his hospital crib they bumped the line they had in his neck which pierced something which cause some bleeding, so Dr Saint Louis had toopen him up again wash out his chest, fix what was punctured and then he was ok. Of couse the night Dr Dan stopped in to check on him he coded right in front of him. So Dr Dan did compressions and after that it was smooth sailing. We spent a total of seven long days in the hospital.
We had some awesome visitors from family & from Other heart families and some friends dropped off special gifts for Cameron. It took my breath away to see how many people really care about Cameron and love him!
Well now Cameronis about to celebrate his 16 month birthday, WOW, where has the time gone?
Cameron is thriving and progressing nicely.
Last echo appointment he was about 20 lbs, he's finally getting longer, his o2 was around 86% and his blood pressure was ok, not hte best it's been but not the worst either.
We talked to Dr Dan after his echo, he now has narrowing in his aortic arch which is why he is having problems with his tricuspid valve leaking (which will be getting replaced sooner then later we were told)
So Cameron has another echo appointment in April, that willbe the echo appointment when we find out when Cameron will be going into the cath lab, to get his aortic arch ballooned open.
We take Cameron to a GI doctor for his constipation issues, he has been struggling with this since he turned one in October. Right now Cameron's GI Doctor has us giving him one full cap of Miralax in his first bottle of the day, everyday. Somedays it works and other days not so much.
We will be going in to the clinic for somemore tests to see what is causing this painful and daily constipation issue.
Starting Feb 1st Cameron & I will be going to our very first Toddler togetherness class. I hope that Cameron will love interacting with the other kids, right now the only kids he sees are his two older sisters and some of his way older cousins. I think this will be a great experience for him as it will be for me too.
I usually don't do much without the husband or without my mom..I just feel so lost & overwhelmed right away, and I count down the minutes that we can go home. so i'm praying I do okay on my own.
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