Since I’m typing this after midnight, I can officially say Cohen is scheduled for his first surgery today (Wednesday). It will probably begin about 1pm and they told us it could last as long as 6 hours. Yikes!
In this open heart surgery, he will have a BT Shunt put in and a TPVAR repair done.
(Sorry this sentence didn’t get posted so I fixed.) The BT Shunt opens up the flow of oxygen to the lungs.
TAPVR is Total Anomalous Pulmonary Venous Return. It is a rare congenital malformation in where all four pulmonary veins do not connect normally to the left atrium. Instead all four pulmonary veins drain abnormally to the right atrium by way of an abnormal (anomalous) connection. So, basically, his veins are there and they seem to be good. They are just in or going to the wrong spot, so that must be fixed.
Yesterday (Tuesday), I was able to go to Children’s today to see Cohen. I had to go about a whole 24 hours without seeing him 🙁 It felt like 3 days. He was intubated so I didn’t get to see his little eyes or anything. He was “sleeping” pretty peacefully. I held his little hand and talked to him. He was having some sonograms done and such to get ready for his surgery. Brent and I met with two doctor’s while we were there to go over his surgery and some things going on with him. It is just so sad. I feel sad for him that he is having to go through it all. His little foot is having an issue from the heart cath, but hopefully that clears up soon.
I’m super nervous for the surgery. Brent and I do feel very comfortable with what the doctors have told us though. However, along with the things they hope to do, they do often let us know the risks. It’s helpful but makes it that much more scary.
We will GREATLY appreciate your thoughts and prayers for Cohen to have a successful surgery. We pray God works straight through the wonderful surgeon and staff.
It’s another one of those nights were I can’t exactly describe what I’m feeling without probably breaking down and then I probably wouldn’t sleep. I know tomorrow will be a long day. So, I want to try to get some sleep. I’m trying to follow the pain medication regimen so that should help.
Here are a few pics from yesterday and today….The ones from yesterday were taken by a photographer from Children’s. The pictures are from when the Parkland NICU team brought Cohen to my room to see me before heading to Children’s. I was so happy they did that. It was my first time to hold him 🙂 I got a text from Brent that said “We are coming to see you!” 🙂 I knew he was in the NICU. I had thought he was going with the team to take Cohen to Children’s but they were able to make a pit stop by my room 🙂 ( I know I posted a few pics yesterday but they weren’t good ones like these)…..
These are a few pics I snapped yesterday with my iphone. He is in his ICU room at Children’s. These were taken the day after his heart cath. He probably won’t be awake until he is able to come off the breathing machines and such after surgery. He did so good for several hours after he was born but during the afternoon and evening when more tests were being run, things began to get a bit scary as doctors were tying to decide what they wanted to do. I wasn’t informed of too much as I was not at Children’s. I think Brent and the family over at Children’s were probably trying to scare me as little as possible. Luckily, a lot the tests that were ran on Cohen seemed to have turned out better than expected. We certainly PRAY his surgery goes as well if not better than some of the tests.
So sweet..(NO, I cannot get over that hair!! I swear it had curl the day he was born but none after his first bath…which I still have video of that to come.)
Daddy sent these last night (Tuesday). Cohen’s face is puffy because all the fluids.
his sweet little feet.. One a little purple…
Brent stayed over at Children’s with him again as I’m still in the hospital having to recovery. My doctor said I might could get discharged today. Regardless, she said I could be at Children’s as long as I needed to be as long as I have the things I need to have. Meds, food, etc. I must admit, meds have sounded much better than food the past few days.
Thank you all again for your thoughts and prayers! We will continue to appreciate them! I’ll try to do some surgery updates via blog, facebook and twitter.