May 11

In the morning we get one of those calls from the hospital that every parent dreads: "how quickly can you get here?" The wound team is looking at her and evaluating a nasty reaction she had to the calcium-- apparently it breaks down the vessel walls, spills over into other tissues, and breaks them down. Although they are calling it an IV "burn" it looks like a terrible huge blood blister and her hand is swollen to twice its size. They contained the "burn" with a special medication that also neutralized the calcium. They will be watching it carefully for tissue breakdown that could lead to permanent scarring and plastic surgery; the first 24 hours will be the worst. Ay yi yi.

Why is it that so often, the days that start out the worst end up the best? All afternoon I had important chats back to back with various members of her physician team, including a Q and A session with her surgeon Dr Black, and was especially excited to have an arranged meeting with another mom with a baby here in the NICU, the only other current baby with long gap EA. Although her son is type A "pure atresia" making his situation a little bit different in a couple of ways, we have a fantastic chat about things that have worked for her, how long she has been here, and on and on. Her baby has had the Replogle (suction tube) in his nose to help prevent oral aversion, and we get to thinking a lot about that.

Skin to skin snuggles while she "eats" through her G-tube for the first time. Since she can't nurse, I sometimes hold her against my skin just for comfort and give her that time close to her mother. The hospital says, studies show huge benefits, both emotional and medical, to babies' and parents' health from this kind of time.... but is anyone really surprised?

A red letter day!!!! Audrey got her first milk via G-tube!!! I snuggled her against my skin for hours, and got to give her her little sponge bath tonight. Sweet times. She is also smiling in her sleep! And I got to talk to the surgeons about her care plan and we now feel much better about it... the "wait to grow" plan has been nearly 100% successful in the surgeon's many years of experience with long gap EA. The most the surgeon has ever had to wait is 4 months for the gap to shorten to where surgery was possible. Wow!! Much less than we'd thought.

Our cute nurse puts up a sign on Audrey's crib that says, "If I need an I.V. for ANY reason, please call my parents prior to sticking me. Thanks! -Audrey"

Nurse Emily is giving Audrey her very first milk feeding, straight into her stomach using her "G-tube"! In this photo she has just closed off the "vent" tube that was draining gastric secretions into a diaper that was wrapped around the end of the tube. She hooked up the line to a new tube that is attached to a vial of my own "colostrum", the super high vitamin, high antibody milk that a mother's body produces at the very beginning of a newborn's life. This amazing pre-milk is often called "liquid gold" because it is so good for babies.

She slept right through all of this! Very deep sleeper for almost all of today; just like adults, they do most of their healing and growing when asleep. So it was a great thing!

A close-up of the big changeover!

The little vial of colostrum is off to the side. :) It took over two hours to put just this tiny amount through the tube, at the rate the doctor prescribed. They are taking no chances of overdoing it-- her stomach is so small and so sensitive, they are going to gently stretch it with gradually increasing volumes and let it develop very, very slowly to catch up from all the work it never learned to do in the womb.

My empty vials of milk, saved in many wee hours of the morning. Worth every bit of effort, seeing this day at last!