Birthday Surprises

Anya’s birthday was on Sunday, and we celebrated in grand style. Since she was baptized minutes after she was born it was her baptism birthday too, so we had her ‘recognition of baptism’ during church. As you may remember Pastor Schade came down to be with us for Anya’s birth so he could baptize her. He told the story of Anya’s birth and baptism, then led the congregation to sing ‘Happy Birthday’ to Anya. Pastor Schade and everyone at Immanuel has been so supportive through this journey.

Pastor Schade and our family.

Adam, Christine, and Valerie, Anya's Godparents.

Afterwards we had a barbecue at the park for our family and friends. There is a brand new playground there with water fountains for the kids to play in, as well as a large pavilion for the adults to relax. So often when I was sitting in the NICU I dreamt of a day like this day, full of life instead of fear of death, joy to replace despair, a beautiful day in place of the darkness of the NICU. We couldn't have asked for a better day. It rained in the morning but as soon as we were preparing for the party the sun came out.

Anya has grown so much recently, and her health has improved. I was watching a video of her from in the fall, and I was alarmed at how quickly she was breathing, I am not used to that anymore! She is off all meds except a nebulized steroid and a reflux medicine. Her oxygen is down to 0.2-0.3 L, every two weeks we drop another tenth of a liter.

Two weeks ago she had a hearing test, and it came back that she had mild to moderate hearing loss. We were told that Anya would need hearing aids for the rest of her life but she would be able to be in a mainstream classroom and do everything other kids could do. She probably could not hear certain consonants and it would be difficult for her to develop language without hearing aids. This week I called around to different hearing schools to get her set up for hearing aids and another group of therapists (sigh). Today she had an appointment with an ENT to evaluate her ears and give clearance for the hearing aids. Then she had another hearing test.

And guess what? It came back completely normal! Evaluating kids this age isn’t simple, since they cannot talk. They have me hold her and they speak at her through a speaker, and when she turns toward the sound they light up a box with a toy in it that cannot be seen unless the light is on. When they make sure she understands the link between turning her head with sound to see the toy, they play with the sounds, turning them up and down to see what the range of hearing is. Today she was hearing things I couldn’t hear! The audiologist’s best guess was that she was not interested enough the last time to pay attention to the tones in the higher pitches and so looked like she couldn’t hear them. It happens sometimes and that is why they repeat the test. She is going back in six weeks so she can have another test and be examined by the ENT again (she has fluid in her ears they want to evaluate).

The hearing loss did not surprise me too much initially because I knew it was a risk with ECMO and all the antibiotics she was on in the NICU. At that point we were only concerned about her survival, and I shoved all the possible effects to the background to deal with later. It is later now, and I have been waiting for a shoe like this to drop. Now that it has been picked up again I am still a little leery. In six weeks is she going to have a different result? Don’t misunderstand me, I am thrilled the test was normal; I am just not ready to relax yet.

I have realized that I write so much about Anya’s medical status I don’t talk about her much as a baby, and that is sad, since I say in the description I don’t want her to be defined by CDH. She is a like lot Arwen was, but if you don’t know Arwen that isn’t going to help much. Anya is a very laid-back baby considering all she has gone through. I have heard parents speak about babies with severe colic, and other than the whole life and death thing we had going on, I believe we have an easier time than they did! Anya is happy to play by herself, and has started scooting around in circles when she is sitting. She loves musical toys and music videos, while I give her a nebulizer treatment I play her anime music videos Adam found on the internet. She loves people, and smiles a lot. As she did in the NICU, she talks with her eyes, getting her point across easily. Anya loves her OT with first steps and is always trying to play with her, getting out of any ‘work’ by using her charm. She sleeps through the night, and falls back asleep easily if we have to unplug/plug in her feeding tube. She is such a joy.

This is Anya the morning of her birthday. Every birthday morning I will get a picture of my girls in bed. I imagine when they are teenagers there will be screaming and cursing. It will be a lot of fun!!

Anya is getting to my favorite age, the grab and go baby age. When Arwen was this age we were never home all day; I preferred to be out on my days off. Now finally Anya is well enough and old enough to be out in public and we are enjoying taking her out everywhere. Last week I took her to the zoo for the first time. She didn’t pay attention to the animals much but she enjoyed being out. She learned an important lesson, that St. Louis in the summer is HOT and HUMID, and something to drink is very nice indeed. She isn’t drinking gulps, but is taking little sips completely unaided, as well as looking mighty pleased with herself.

So that is where we are at a year old. A lot more to accomplish but doing much better and she will have  a lifetime to do it in. Praise God!