Tip-toe through the fester field

I try to stay away from angry blogging. I don't want this to be a source of pain to someone else..  Another thing to add to their "Field of Fester," where they go to wallow in it's septic mud--a mixture of self-pity, paranoia, anger, and being a know-it-all.

Beware the septic mud! 

If you happen to get too close to a "Fester-er" , you must tread gently or else you'll step on a landmine that will splatter you with crap like the pus of a giant pimple. Usually, I try to ignore it, but sometimes I have to get  it off my chest before I start to fester myself. By the way,....

I Miss AKA Super Mommy.

The longer I blog, the more I miss it. The main people that I started blogging afresh for, don't even read it. And I thought that I'd downloaded copies of blog entries that I was hoping to publish under my new name... only to find out I actually didn't. THAT was a major bummer. Anyway, back to starting afresh without anonymity. In some ways, it can be really refreshing to know that I'm accountable for everything I write and I can share it with anyone without having to worry. In another way, it's horrible, because even the best of friends will make you mad sometimes... and... even though this is the best place to express those feelings, sometimes you feel you have to--like when your brother or sister has a big autism no-no moment, or someone you're friends with goes all "if this was my kid" on you,...or when someone close to you feels that you're "sparing the rod" & it's "spoiling the child." In those moments, autism parents, or just special needs parents in general, feel so alone. And it's so unsettling. & It hurts. But when someone either gets up enough nerve (or has enough anger), that they just let all those feelings loose in a public place--facebook page, blog, support group, whatever--and you see that you aren't the only one who's been treated that way.. (OR, on a lighter note, your child isn't the only one who does that:) It's a mixture of relief, sadness, anger, and/or giggles & joy that forms a bittersweet bond. You've got their back, and you know that they've got your's. And suddenly, it seems that you have two groups of friends--"them" & "us."

Roo's Birth Story: Part II

Picking up from where I left off...

The moment when I felt my baby being taken from my belly, it was like the world paused. After the longest 2 seconds of my life, she let out a loud wail. I was able to breathe again. She was wiped down & laid on my chest, & Terry and I both had tears streaming down our faces. I was so thankful for this child, so thankful that she was alive, and.. to be honest..  so thankful that this was over with. I was ready to move on.

A minute later she was taken to another room and Terry followed. A couple of nurses were left with me and they started to clean me up. They kept talking to me, telling me how much fluid there was, LOTS of suctioning was going on. Then there was some silence and I heard one of them say, "What's that??" I never did hear the reply, but once again there was more suctioning. My OB doctor came back in to stitch me up and then left again. I was finally switched back over to a bed by the nurses, and wheeled back to my room. Halfway there my OB doctor rushed up to the nurses and said, "Where's the placenta?!" They told her that they already threw it away, and just shrugged like it was normal procedure even though the doctor seemed upset.

People came to visit me from time to time. Nobody was talking much about my baby. Some were better at putting on a happy face than others, but I could sense something was wrong. My OR nurse came back often to see if I had feeling back in my toes yet, because I couldn't go to the nursery until then. My doctor was very sweet. She checked on me, asked me how I was, and even brought me some sprite. Her bedside manners where wonderful.

Down the hall, through a  pair of thick sound proof doors, a different scene was playing out. My husband was angry. People who described him, did it with wide eyes. My poor Roo.. her blood sugar was 16, I think... dangerously low.. and she was being poked over and over again by incompetent nurses who didn't know how to start a newborn IV. Even after other nurses told them a team from Riley was coming, they continued on. To this day, I would like to have some words with them, whoever they are. 

Everybody knew that Roo was going to be transferred to a Children's Hospital before I did. Nobody wanted to tell me. Finally, the pediatrician on-call came to visit. She told me that they thought she had Trisomy 18 & that she was being life-lined to Riley Hospital for Children. I started to cry, and her reaction.."Oh, Mom is crying.. *tsk, tsk, tsk*" and then gave me a pitiful smile & left the room. Her lack of compassion, emotional wall, or whatever it was that she put up, sealed the deal that she would never be my daughter's pediatrician. 

I was crying, my mom was crying.. and she hugged me. All I could say was that I didn't understand, all the tests came back normal. With this, I must backpedal a little bit and tell you about my pregnancy. Besides being HUGE from all the extra fluid, I had extremely mild gestational diabetes. Literally, I was 1 point over the limit. I had to check my blood sugar for a week and then it was determined that it could be managed with diet and exercise. The dietitian told me that if I happened to slip up, go for a walk, and to take a walk daily. I was good. I took my prenatal vitamins till the end. Little snacks that I packed around with me where things like.. celery sticks. Bleh. Anyway, when I had the blood work done in which they checked for different genetic markers, the results came back that Roo was 1 in 10 for Trisomy 18. We met with geneticists, had ultrasound after ultrasound during my pregnancy to make sure her organs where forming correctly, and that she was responsive.. At one point they wanted to do an amniocentesis. Looking back, I wish I would have agreed, but I didn't know what was ahead. I didn't know she would grow into the term  "medically unique". And I still don't know if it would have made any difference in the long run. At the time, my thoughts were that none of the additional testing had come back showing any evidence that something was wrong, and the procedure didn't seem worth the risk. 

Once again, I have to give thanks for the nurse who made sure I held my baby before the Riley team arrived. She had an oral feeding tube in place & she kept playing with it with her tongue. My little redhead was still fussing up a storm when they handed her to me, and then she just stopped and looked at me with those big eyes. She already knew who I was.. <3 

If you've never seen a lifeline team, it can be surreal. The team arrived dressed in dark blue jumpsuits, with red stripes down the side, wheeling in an incubator. I kissed my princess goodbye and handed her over. 

Later, I was told by a friend that they started an IV with 1 stick. That's right, one stick. 

Her dad left me early the next morning, and then my mom stayed with me at the hospital. I was terrified to stay alone. I wouldn't see my little redhead for 4 days. The daytime nurse in charge of my care was horrible. I spent another night in the hospital and then was discharged. I spent another night at my Mom's house, and then packed my stuff up and headed to the children's hospital. We had a room at the Ronald McDonald House for 3 weeks. They. Are. Amazing.

The next chapter will be from my husband's point of view. Sorry for my long absentee. February was especially dreary. ;-)