Friday, May 4, 2012
Happy Birthday to my precious Ilse Joy
Today was Ilse's birthday. She is a big one year old girl now. She and I had a strange kind of day together. I think she knew that I was having a very hard day.... just from remembering last year. Truthfully I have been having a very hard couple of weeks. I hope it will right itself after today, but I am betting I will be emotional all the way through June 3 or so, since last year that is the day she got to come home. Tomorrow will be the day she was transferred to Med City. I still have a voicemail saved from Kara of the transport team. The Sixth will be the day I escaped the hospital without a baby in my arms and crept slowly up to the NICU at Med City. The Eighth will be the day I got to hold her for real the first time. I am so thankful I have a video of me holding my precious Ilse for the first time. (I don't count in the OR.) It was mother's day last year, but I don't claim that as my first mother's day. It was way too awful. This year is my first mother's day. The dates march on, each with its own significance-- the day Tim suspected SLOS and convinced them to test (boy was I mad at him), the day we insisted on egg, the day we agreed to the surgery, the day (our anniversary) that we had her surgery. What a horrible day. That was the day the nurse told me that Ilse was just going to be in pain and cry. Then, finally, June 3... The day we brought Ilse home. We stopped three times or so on the way home to make sure she wasn't barfing and choking on it. So many memories. This year we will experience many changes. My bottle washing days are about over, since tomorrow we will start transitioning Ilse to her new food. It has a twelve hour hang time, which means I can put the boys to bed, start her food, put it on interval feeds, and then *go to bed.* No more staying up till all hours to get all the food out of the bag so I can add fresh. No more setting my alarm to get up to turn the pump off so it won't feed her rotten milk..... And then there are the times I am so tired I don't even hear my alarm and do feed her the rotten milk... Whoops, I have done THAT three times already. Yuck! Soon, no more. Ilse will also be getting a new therapist, and hopefully will be having physical therapy two to three times a week after that. Ilse needs to learn to sit. We had a party tonight for Ilse, and the game we played was called Ilse's Stats. People had to guess which category went with which number. Jess got nine out of nine correct. Unbelievable. Hyde, or as Luke says, Hyden (lol), got eight out of nine, and the numbers got worse from there. Some people got none right..... Hahaha. Here are the stats for your marveling and enjoyment. In the last year since coming home from the NICU... At least 41 hours of driving to and from doctors appointments. Doctors that have a large part in Ilse's care... Not including NICU doctors.... 10 2 soon to be 3 therapists. (again, since the NICU. She had two in there.) 6 ER visits, 1 of which resulted in a hospital stay. 330 food bags. 25 lab visits where we actually got blood. 2 surgeries. 70 driving hours during the NICU stay, and we only counted the 26 days I did the driving. 5 kinds of insurance. Wow. This year, Lord willing, will be much MUCH different. For starters, tonight I am not strung out on mag and I can go see my baby any old dang time I want. And I can touch her without gloves. And she won't be alone these next two nights like she was last year. This year she KNOWS her mommy loves her and she KNOWS I am always there for her. The Lord deserves all the praise and honor for this year. He has taught us so much, some of which we learned kicking and screaming. That pump was awful at the beginning.... On June 3 last year I sat in Ilse's room and cried because I couldn't get the pump to work and (cue crying wail) *I can't even feed my own babyyyyyyy!!" Not this year. Ilse now weighs 15lbs., 2 and a half oz. She is not starving usually. Just today when I accidentally fed her back pack when we were at party city.... Happy, happy, happy birthday, Ilse Joy. Your mommy loves you very much.