Surgery Date

This morning's visit with the surgeon went well. The date for Alexandria's Mic-Key Button surgery is Tuesday August 25th. Alex will be in the hospital anywhere from 2 to 4 days. The surgeon told me that putting a Mic-Key Button in directly instead of threading the G-Tube in first and then 2 months later after that heals putting in the Mic-Key Button is the newer but tested out and prefered method. He said it's more precise and safer. The healing time is short and I don't need to do anything to care for the incision - there will be a dressing on it that will fall off when the incission is healed! We will have to be very careful that we accidently do not pull out the Mic-Key button during the first month or two. If we do, we will have to get a dye test done to make sure there are no tears anywhere inside Alex. Apparently after the first day Alex will only need Tylenol for pain and typically after a day or two of that most babies no longer have any discomfort or pain. Because Alexandria is an ex-cardiac baby she may have to have cardiac anasthesia instead of regular anasthesia. They will contact the anasthesia folks to let them know about Alex so the experts in that field can make the decision. Either way, I will have to go in before the surgery to meet with the anasthesia team for a consoltation. It's been an emotional roller coaster! And crazy busy! Alex continues to only eat off and on and to not drink much. And I am actually at a point in this journey where I am excited about the Mic-Key button and can't wait till she gets it! I had to accept that this is real first...and that this will be long term. I had to swallow that as much as I want to feed my baby and have her flurish from that nurishment I am not able to do it. I had to deal with feelings of guilt and all the 'what ifs'. I am in a place now where I accepted what is going on and that it had nothing to do with me. Steve and I have gone above and beyond doing all sorts of crazy things to try and get Alex to eat and drink the way she needs to. We have done our part and will continue to do our part. Alex needs a little help. These things come along with being born at 28 weeks...One day she will eat and drink on her own just fine. I am looking forward to Alex sleeping in her crib again and to her being comfortable. I won't miss showing a tube in her nose and threading it into her belly every night. I won't miss strapping her in every night and putting restraints on her arms. I won't miss pulling the tube out every morning and watching Alex gag and cry. The Mic-Key Button is not perfect, I realize that. It will have it's own set of challenges I am sure. BUT it will be easier for all of us. Alex will be getting 3 tube feeds during the day as well as her night feed once she gets the Mic-Key Button until she gets up to where she should be. The G.I. Doc says they see very few kids like Alex who have never been on a chart...Once she is on the chart and going steady she will be weaned off of the day feeds. No one knows how long that will take. The pump is portable and it fits into a little backpack so we can take it with us and have Alex hooked up to a feed when we are on the go. Please pray for the surgeon, the anasthesia team, the hospital staff and equipment as well as for protection, favor, quick healing and easy adjustment once Alex is home. Thank you so much!