The first year of Maelee's life we had to relive her birth story at every appointment, every new doctor, every new therapist. But after that first year they all had her records, new her story, and I could breath knowing I wouldn't be asked those hard questions anymore. Today the surgery center called to ask questions regarding anesthesia. She had a MRI with anesthesia at the end of last year, but they already had her info and just reworded it to make sure it was correct. Well today was a new place, a new doctor, and no history listed.
"Does Maelee have any medical issues or special needs?" hahaha! I almost laughed when this was asked and just said "How long do you have?". She broke the question down from the beginning. Did she have any breathing complications at birth? Why yes she did, and I went on the tell them of her use of oxygen, doses of surfactant, medications, NICU stay length. The whole time the lady asked questions in between- you see I know that all this matters when it comes to Maelee's breathing during a procedure. Her immature lungs haven't developed completely yet so difficulty can arise. Once we covered her birth and the scary 39 days, including the heart failure, hypertension, and medications for those I was more than ready to be done answering questions.
"Does Maelee ever use a nebulizer, inhaler, or take anything for asthma or allergies?" Yes! After explaining her use of the nebulizer and the new prescriptions of singulair she moved quickly on to the next question which I expected..."Does she have GERD or reflux issues now or in the past?" Yep we have that too. Prevacid helps some and we just go with the flow.
She asked about any diagnosed heart problems or defects...nope! If she had any hearing or vision issues......not yet! Then after she covered the systems of the body she asked the hard question: "Has Maelee been diagnosed with any neurological condition such as Cerebral Palsy, seizures, migraines, etc?" My heart sank as I answered this one....yes she has mild CP. Then I got the response I hate, the pity response, the I feel bad for you response.....the dreaded I'm sorry and do you think it is related to her prematurity? To think about it she asked if a lot of things were related to her prematurity and difficulty at birth.....not something I wanted to talk about.
She continued to ask questions about Maelee, we covered her sleep disorders and medication related to them. Had to add up how many times she has had the flu, pneumonia, RSV, bronchiolitis, been on steroids for any of them, and any other breathing troubles. At this point I made a little joke on how we could of had coffee and chatted for as long as we have been on the phone. :)
After a chuckle she asked the next hardest question, "Would you say Maelee is that of a typical 20 month old?" TYPICAL is a word I have learned to hate, dislike, and loathe. No Maelee is not a "typical" 20 month old...she is Maelee. But development wise I knew she was behind, she is a preemie and that is to be expected. I had to list the age I thought Maelee was on, what therapies she is recieving, special needs, braces......I had no idea what this had to do with her surgery but I knew that the sensory stuff would probably play a role tomorrow.....she kept asking and I kept answering.
When she was done getting the novel of the past 20 months she finished by saying to arrive at 6am and have a great day.
Have a great day? You just had me rehash all the things I thought I was over, you asked about her CP, breathing troubles, sleep disorders, medications, therapies.....and everything else that has happened and been dramatic. I wanted to not talk about it, I wanted you just to know the answers like the others did. What I truly wanted was to answer no to all your questions instead of yes to almost every single one.
I feel guilty, I feel as if I am to blame, I feel like my body failed my daughter, I didn't keep her safe and because of that she has a life of challenges ahead. That is the reality and feelings I live with daily. When I think of the past 20 months I am thankful and blessed to have this sweet girl in my life, but in the back of my mind I can't help but think if my body just had kept her in 7 more weeks how her life would be different. Would she have CP, would she have sleeping troubles, GERD, possible asthma? Would she have therapy almost every day of the week, would she need little braces, would she be able to process the world better? Would her life be different or would it be the same....I can't help but think it would be so different. Her first 20 months could have been spent playing and having fun instead of therapy and specialist visits with testing. I will never know the answer to any of these questions. I will always feel guilty. I will never know how different her first 20 months could of been.
The only thing I know is that I am trying my best to make everything right......I can't erase the start of her life, I can't change any of the tests she has had, the diagnosis that hangs around, or the fact that we spend more time in therapy then we do at the park.
Early intervention has been a god send, therapies are the basis for our week, and the daughter I have today is determined and strong willed. I wonder if she would have this personality if she had only stayed inside for 7 more weeks? Not sure I want the answer to that ever, I love her personality. Her strong will, determination, stubbornness.....all these attributes make her a fighter and my daughter.
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