I use the word surgery but my husband does not use that word. I guess he would prefer the word procedure or something? My view of this is this: My daughter will be under anesthesia. She will have instruments watching over her vitals while under anesthesia. They will be inserting instruments into her body to view her and observe her and inspect her. To me, that is surgery. Asleep and things inside the body = surgery! I guess if blood is not involved my husband thinks it's not surgery? That makes me grin a little. It's all based on....opinion. Oh that is the other "O" word. Opinion!
Back to the surgery. We will get a phone call from Rush Medical Center in Chicago on Wednesday. They tell us what time to report to the Hospital on Thursday. I do not know why they do it this way, but hey, arguing with that system will put you in the Hospital. On Thursday we report to Rush on time and register through that slow desk system of theirs. They are always slow at that location. I wish a new system could be implemented. For the past 8 years we have had to use them for one thing or another and that one spot is like a sleepy snail.
I can't go into the idea behind what they are going to do without telling her history first. Or at least a brief blip of it. Naw, I'll just do the whole thing. So here we go:
Little A was born on the end of July in 2002. She was part of the 9/11 baby boom that came around, in my opinion, and is my second born, but B's first. During a typical ultrasound (her first, actually) we discovered she did not have a visible stomach on the monitor. The operator actually paused, went back, paused again, and then moved out of the room to get someone else who came back into the room. I was so worried. I know my blood pressure was already high...I can't imagine what it was at that point, but bang! zoom! comes to mind.
The other technician could not find her stomach. Hearing the words "We can't find her stomach" (or something thereof) made me freak out on the inside. I didn't know what to say or do other than wonder, what does that mean? She explained no liquid could be seen to see the stomach. That had many meanings and we were sent to specialists in Chicago. When I got home I did what I always do. Look stuff up! I used search engines and started looking at what it means to have no stomach visible and so on. I am a "I need to know this stuff" person. I prepare myself that way. I think B went to lay down and think. He does his thing. I do mine. It works!
The specialist had me on a table for so long the pressure was unbelievable. He mentioned a "sack" and a "nub" and this and that and then finally said the words "esophageal atresia with a slight fistula"...say what?
Simply put, Little A was born without an esophagus and had a small hole between what was there of her esophagus and her trachea. Here is a diagram showing her type: EA/TEF . Little A is a Type C on a chart that shows many types of this birth defect. It is called the most common form of this defect, but considering how rare any of the types are, I think it is anything but common!
B was with me and Little A (yes, still inside me but she was there so she is mentioned) the entire time we had to do something. We had to go and have her monitored twice a week at Rush (the gas money and trying to pay rent etc..is how our debt started to come back but we had to do it for the baby girl..). We saw our Specialist often.
Our baby girl would be born without a way to swallow and if she did, the liquid would go into her lungs. The mind can really, really work around all of that with imagination and worry and everything....
...that's probably why we started to drive around often. Driving away in the car. Traveling to other places. It gave us something to do. It distracted us. It helped us. (It got me Dairy Queen vanilla cones...the best cheap craving...) Our own kind of therapy. That was much cheaper than paying a therapist!
Then we met Dr. Bass and everything shifted into a better place. At the time, Dr. Bass worked at Rush and saw us about once every month along the way to make sure everything was going smoothly. She made sure we understood the proceedures ahead of us. She made sure we understood what would happen when Little A was born. They had to immediately get her prepared for being out of the womb. They had to make sure she could eat (G-tube), and so on. It was a lot of preparation with months to make sure it was just right for us and for Little A.
She told me if I could carry Little A full term it would be the ultimate prize. From what Dr. Bass explained, a baby with this type of birth defect was hard to carry full term due to amniotic fluid build up and toxins that produced (not to mention weight and pressure...). The only thing I remember hearing was "full term is an excellent start for the baby". Then damn it, full term it would be. My stubborn mom side kicked in. I would carry her as long as possible. I promised Little A one night, mentally speaking to her, that, no matter what came, she had a safe place to grow and be ready for what she would be dealing with.
Even with the summer heat (wow...hot does not describe that summer. I did thank plumbers everywhere for cold water showers...), even with toxins in my system, even with the fluid sloshing about inside me (we called me Little A's indoor swimming pool). Oh, the fluid could be removed, they told us, with needles inserted in the womb through my stomach. Much like they would do with amniotic fluid tests. "It would give you some relief". Um, hello? You want to stick a needle like that through my tummy and into the womb where my baby is happily splashing about? No. Way. I will remain a walking swimming pool.
With all of what I dealt with physically I still held her for a full term. I was so proud of myself afterward, but I was extremely proud of B. Without his help and his support and just him being who he is....it would have been hell to deal with alone. He kept me going. He's my hero.
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