1 Month Milestone....
She had a 2nd opinion with another cardiologist last week. The main issue is weight, weight, weight. Weight has always been a issue in my family somehow, but it's never the lack of weight. Mylah has yet to get back up to her birth weight of 5lbs 3oz. Surgery may be an option once she gets older, but Mylah must gain some weight in order for her to be able to stand a chance against the heart surgery.
Once she gains weight, we can then consider the options we have in regards to her heart defects.
I find myself crying some days because I'm not sure what I should do. I look at her face with those 2 big eyes gazing up at me and my heart hurts for my daughter because I can't FIX her. I always ask myself what if the decision I make is not the one that's right. It's so easy to say "well, cross that bridge when you get to it" but truth of the matter is I have to think about the options now. I can't wait until she gains weight to start to think about if heart surgery is what we want for Mylah. Heart surgery on a perfectly healthy BABY is risky. Add to that equation Trisomy 18 and a very complex heart defect and the game changes. We must think about the risks & complications associated with a major surgery.
I am advocating for Mylah but I must consider whether the time she will spend in the hospital's ICU is going to be worth it. Do I want her in the hospital for a month or at home for an extra month? Is she going to be in pain afterwards? What if the surgery causes more pain for her in the long run? What if the surgery isn't successful in closing the holes in her heart? All these are questions that run through my brain each day. It's a hard decision and I'm hoping we make the right one for Mylah.
I was mad at GOD recently... Ashamed to say but I was. My feelings get hurt each time I look down at my small baby with her feeding tube, who some haven't given a chance. Some people say I have a big caring heart. I look at Mylah and say wow isn't it funny, I have this huge caring heart but my baby's heart is broken. I didn't smoke, drink during my pregnancy. I steered clear of caffeine & fish. I took prenatal vitamins for 2 years but my baby is the one who is sick and it's a sickness that can't be cured.
While most new mothers are concerned with what day care they are going to send their babies to, I have to worry about if either Juwan or myself will have to quit our job to take care of Mylah because there is no special needs daycare that I can send my daughter to while we are at work and I can't entrust a regular daycare facility to give Mylah the care that she needs.
I was in the car the other day and I thought "WOW how my life has changed". It used to be Juwan and me; coming & going as we pleased, going to bed whenever we wanted, jumping up at the drop of a dime to go to dinner, now all that is changed. Most families take about 2 months for their lives to return to "normal". My normal has changed. I don't really feel comfortable having Mylah out in public. I don't feel comfortable leaving her with anyone other than her father no matter how much help we are offered. I don't have any desire to leave the house really, it just doesn't feel right. I'd be lying if I said I didn't go through the motions in my mind and ask myself if I had it to do it over again would I make the same decision; I never work up the courage to answer the question I ask myself, because on my more emotional days, I'm afraid of what the answer would be.
I want to be with her every second of every minute. I hate all the doctor & nurse visits. All the exams, echocardiograms, scales, blood pressure machines, the constant phone calls from the automated systems reminding me of yet another appointment. I just want to spend time with Mylah. Just Juwan, Mylah & I. I just want one week where there are no disturbances, no appointments, no phone calls, no follow ups. I just hold her sometimes. I lay her across my chest where she seems to be most comfortable. I smell her hair. I kiss her cheeks. I rub on her legs. I just cherish her and I ask GOD to lead me in the right direction with the decisions I make so that I will be able to give her more kisses, smell her hair again, rub her legs more and look into those big brown eyes and know that it's one less worry.