The Long Step Down

The last time I updated this, I was debating being ready to go home. Well, there is no longer any debate. I am ready. Bethany is ready and Anna Brooke is ready. Unfortunately, Emma Kate is quite comfortable in the step-down unit. We moved to the unit on Monday and were thinking we would be leaving around Wednesday or Thursday. Wednesday or Thursday became Friday, then Saturday, and now, Sunday. I will explain the details in a moment.

Bethany and I have been taking turns staying the night in EK's room so that one of us is fully rested at the RMH while the other takes care of Emma Kate during the night. It is also nice for one of us to put Anna Brooke to bed and be there when she wakes up. It is amazing how much we have missed her through all of this. Bethany stayed Monday night, I stayed Tuesday and then again Wednesday (so I could be rested for the pretend drive home Thursday!), Bethany last night and I will stay tonight.

Though we are growing tired of it by the minute, the step-down unit is nice (your typical hospital room) and the staff has been great. Bethany eats her meals free (all breast feeding moms do, which I think is awesome) and mine are only $5. The food is decent but I don't think either of us will eat chicken fingers again for quite a while. And I can't stress enough how much both of us miss our bed. I think massages at Ross Bridge are in our future.

Anna Brooke has been doing wonderful. She spent several days in Warner Robins with Kiki and Lito and seemed to have a great time. She has also enjoyed spending so much time with Nana. Today on our date, Anna Brooke over heard someone say Starbucks and she said, "ooh, let's go to starbucks with Nana. We can get another blueberry muffin". I think she is enjoying being spoiled by her grandparents. Bethany and I are so blessed to have such wonderful parents to help us out with everything.

As for our date, we spent the morning at the Georgia Aquarium. It is very nice but I am glad she was free! I think she enjoyed it but will enjoy it more when she is older. Her favorite things were the waterfall "just like on little Einstein's!", "mt. McKinley" (a pile of rocks with snow for the arctic fish) "just like on little Einstein's!" and the 3-D fish movie because of her "secret agent super spy glasses". Oh, and the seals were cool, too. Then we headed to the Varsity for hot dogs and a pc (icy chocolate milk). On our way home she said "I had a wonderful time with the fish and you daddy". I love that kid.

Emma Kate is doing great will almost everything. She had her oxygen tube and head iv removed on Tuesday, and her pacing wires removed today. Her sats (blood pressure, oxygen level, heart rate) are looking awesome. Sometimes her oxygen levels are a little too high but this is better than being too low. She loves to be held by mommy and daddy and stays awake for all visitors. I think she loves showing off her big blue eyes! She hates having her diaper changed and getting x-rays done. Other than that, she spends her days sleeping or talking (grunting) to us.

The physical therapist says she has great muscle tone and feels she will meet all goals on time. The speech therapist has given her two bottles and has been impressed with her ability to swallow. Aspiration is a big fear for heart babies so this is great that EK can drink. Today she took her car seat test. This test is usually done for an hour to an hour and a half to simulate how the baby will do in the car on the ride home. Because our trip is 2 1/2 hours, Emma Kate sat there and slept for 2 1/2 hours. She is ready to ride.

Well, almost.

The reason we are still here... Emma Kate is fed 55ml of milk through a ng tube (tube through her nose directly to her stomach) for an hour and a half every three hours. If her stomach can tolerate this, she will move to 55ml an hour and so on until she is taking everything from a bottle. Typically, when children get to 55ml and hour they can go home because the doctors feel confident they are handling the food. Unfortunately, she is having a difficult time handling the feed. Reflux is very common in heart kids but she spits up a lot. They want to keep monitoring her until she can hold food down a little better.

Bethany and I are so proud of how well Emma Kate is doing. Now we just pray that she can start to handle this food. Please pray that she will start to tolerate it better. She has done so well with everything else and I know that she will get the hang of this soon. Thank you for your prayers and praises. We can't wait for you all to meet our sweet little girl.