When Ken and I lived in England we made a pact to make Sunday adventure day. Since we moved to New Haven we havn’t been doing it.
Today we decided to go out for an adventure.
We went up to Essex and went on the Essex Rail Steam Train (see photo gallery for more pics).
ELLIE LOVED IT.
It was really fun and on the way back we stopped to eat at this really yummie, outdoor, side-of-the-road seafood restaurant called The Place. It was so yummie. Clams, corn and lobster right on these giant open grills. We feasted and even Ellie chowed down.
What a great adventure day!!
Ken rented the HBO movie “Something the Lord Made” tonight. It is based on the true story about the first doctors to perform open heart surgery on a “blue baby” with Tetralogy of Fallot. It is a tear jerker, but a really good movie.
All I can really say is thank God that there are people who are strong enough to keep trying new things and brave enough to operate on babies everyday.
Yesterday we went to Children’s Hospital Boston to have Ellie checked out.
What a shocker
They put her to sleep and spent almost a hour and a half doing heart scans – regular and 3D. They got the best pictures any doctors have ever had of her heart. Afterwards we got to talk to Dr. Marx (the cardiologist). Dr. Marx told us that he had discussed her heart with Dr. Pigula (the surgeon) and they think they can attempt the repair.
The repair? That would mean one open heart surgery and a more normal heart, therefore, a much better long term. This is what we had always wanted to hear, but we’ve been told over and over that the left side is too small and her single, common valve doesn’t look like it would make two good valves (this is the cut down version of the problems I won’t bore you all with the details).
Well, the docs in Boston think they can do it. They see people from all around the world and have seen and done surgery on thousands of babies’ hearts. They know what works, not just from books but from acutal studies and surgeries they have done. So if anyone can do it, it’s them. They want to go into surgery with the thought to do the repair and if things don’t look good when they get in, then they will change gears and do the Glenn Shunt.
It’s a bit scary and hard to believe that she may actually have a kind of normal heart (Ken calls it a Franken-Heart because it will be part fabricated and part real). I don’t really want to believe it until the surgeon walks out and says that it is done.
So everyone fingers crossed that this works and the doctors have quick hands and enough valve to work with when they get in there.
Surgery date is OCTOBER 23rd.
Ellie’s Appointment to see surgeons Dr. Pigula and Dr. Marx at Boston Children’s Hospital. She is also having amny heart scans including a a 3d scan.
Boy did they get it. Heather and Chase’s wedding was the greatest. The cermony was meaningful as well as short and sweet. There was a bag piper – almost made me cry – and beautiful flowers – I mean really beautiful flowers – and her nieces even gave her the traditional horse shoe as she was walking down the aisle – that did make me cry – but nothing compared to how beautiful Heather looked. The dress was so perfect for her and fit her so well. Chase couldn’t stop smiling and I have never seen Heather look happier.
Everyone danced and drank and had yummie food and cake and it was a very fun wedding all around. Thanks for letting me be apart!!!
Today started bright and early. We had to be at the hospital at 6:30 am so we were up at 5:20 (not that neither Ken nor I got much sleep last night). Ellie went in at around 7:40 and by 10:15 they were out and the Doctors were showing us X-Rays of our daughter’s heart. It was a bit unreal. We have seen her heart on echo’s so many times it was really weird to see it on a X- ray.
They didn’t see anything new and the cardiac cath just confirmed what they thought. The left side is much smaller than the right side of her heart and she is completely right heart dominate.
Her Doctor said it looks like a septation isn’t a possiblity and we are looking at The Glenn Shunt and the Fontan, but he would be interested to see what they say in Boston. The general feeling is that surgery should occur soon (the blood flow to her lungs is high and her heart is enlarged) to help her to grow and to avoid RSV (cold and flu) season.
Ellie did wonderful and came out of it like a super star. Her legs had to remain still for about 6 hours to allow the vain they went into on her leg to clot up. Any of you who know Ellie will know that was no easy feat keeping her legs still. They actually strapped them to boards. She didn’t fuss or wenge at all until about the last 45 mins or so before we could leave, but by that time even Ken and I were more than a little wengy. Ellie was so good the nurses even commented on it, we are so proud.
We got home around 5:30 pm and Ellie is now in bed.
Lets pray it all goes as smoothly and text book as today did.
Thanks for everyone’s prayers, good thoughts, and postive energy. It really meant a lot.
Dr. Asnes will perform the diagnostic cardiac catheterization at the Yale-New Haven Children’s Hospital on Thursday morning, September 07 th.
It is nerve racking knowing your little one is going into hospital for any reason but knowing they are going to be messing with her already wonky heart…
So we have all been a little on edge today and wouldn’t you know that Ellie wouldn’t go down to sleep for nothing tonight, crying and carring on like crazy. When we went in calm her down she was sitting up in her bed crying.
For those of you who don’t know this is HUGE. Ellie isn’t crawling, walking, or pushing herself into the upright position yet.
We have been trying to get Ellie to sit up by herself, helping her get in the right position and push up but she has never gone from the laydown position to sitting by herself. So I was stuck in a situation where I wanted to praise her for sitting up by herself and being such a big strong girl and telling her she was being naughty for still being awake and not sleeping like she should.
I guess that was just the first of many situations like that.
We went for Ellie’s pre surgery meeting yesterday for her cardiac cath next week. Met with the nurses and saw where she will go after the cath for recovery.
The best part was Ellie was weighted and wounldn’t you know it, she is now a whopping 17 POUNDS!!!! That is up a pound since the beginning of July!!! YAY!!! You keep eating girl.