Day 83- Leaps and Bounds

Kasey came into town today, on Monday she is flying back with Arwen to St. Charles. We spent the whole afternoon cuddling with Anya. Dr. Kays came by and we talked about what needed to happen for Anya to go home. He told us at this point they usually set a date of discharge and try to work on getting goals met for that day. So he is thinking late next week or early in the following week.

AHHHH!!

So now my laid-back, it will happen when it will happen attitude is leaving fast. We need to learn how to FEED this baby, before we are on our own with only occasional help from therapy. So today, Anya took her first bottle. It was only one third of an ounce, but it still counts!

I have talked about feeding issues due to oral aversion before, but this is the first real time we had to work with it. Babies who are sick for so long do not have the same pleasant experiences that normal babies do. Normal babies learn with every feeding to associate sucking with feeling full and comfortable, as well as snuggle time with a caregiver. Anya has never had this experience. She has always enjoyed mouthing things, toys, her hand when she finds it, even her intubation tube, but if you get too far back on her tongue she gags very easily. Most of the stuff in her mouth has been uncomfortable. Also, she has to work harder to breathe, so she can wear out faster when eating. 

There is not much incentive for Anya to suck long enough to get any real nutrition. So essentially, we are teaching her that sucking on a bottle is a pleasant experience, so she can learn how to do it effectively and eventually take all of her food by mouth. Since she gags so easily we have to move very slowly, and only when she is in a good mood. First we have to let her feel the nipple and get used to it in her mouth, then, when she is ready she will start to suck on it, and we have to hold her just right so we can pick up on any body language and hold her where it is easier for her to suck.

She did really well for her first time; she only gagged once and seemed really receptive to the whole experience. The OT seemed impressed.  It is intimidating working on so many things at once; tonight the OT and I were holding her together. She said we could continue small feeds this weekend and I hope to get a little more confidence.

This has been a great day, but an overwhelming one as well. Along with all the movement forward, a personal issue was resolved. I am going to be a stay at home mom, at least for a while. This first year or so is going to be unpredictable; often CDH babies on the more severe end of the spectrum are hospitalized several times the first year due to illness. There are just too many unknowns to be able to commit to working; Anya will also be better for having one main caregiver who can track her and knows her ‘normal’. I am excited to stay home with BOTH my girls, but have to admit that I have mixed feelings. Being a nurse is at the center of my identity, it feels strange to no longer be one in a professional environment, even though I will be using all of my nursing skills in taking care of Anya.

So tonight we are excited about the future, and very, very thankful for all of God’s blessings. Anya is healthy enough to go home and it is possible for me to stay home to care for her. Still praying for strength and wisdom as our family makes this transition!