It is no secret that I was terrible at being pregnant. I consistently dealt with pre-term labor through out my pregnancies, even including premature rupture of membranes at 29.5 weeks, with one of them. I've spent countless hours holding down my couch and hospital beds, trying to keep my baby in, just a few more days. I've dealt with horrible side effects from the the medications administered, in an effort to stop my labors.
Sometimes, the doctor's efforts worked and I was able to carry to 38 weeks, other times, they did not and I found myself delivering as early as 33 weeks. Thankfully, I can say that even my 33-weeker was incredibly healthy and I didn't deal with many of the issues that preemie mothers typically face.
Avery was our first preemie, born at just barely 35 weeks. We were warned that she would most likely have some eating/sucking issues and perhaps be unable to maintain her body temperature. It was reasonable to expect that she would spend some time in the NICU, while she adjust to life outside the womb, over a month before she was supposed to. At 7 lbs 3 oz, though, she was perfectly healthy and never required any special care. She was never admitted to the NICU and she was able to come home with me, never needing extended stay care.
Everything was perfect and wonderful with her, until she was about six weeks old. She woke up one day and I just knew that something was wrong. She had been acting a little sick, but even now, I don't know what alarmed me so much. After calling her pediatrician and finding out that I couldn't get her an appointment until the next day, I decided to take her to emergency, at Primary Children's Medical Center.
The entire 40 minute drive there, I talked myself out of going, several times. Here I was, a mother for the third time, but I was acting like the over anxious, crazy first time mother, that rushes her child to the doctor every time it sneezes. I couldn't even really explain to the nurse why I had brought her in, other than she had a cold and seemed "off".
All hell broke loose, about half an hour after we arrived and they were assessing her oxygen. As soon as they realized her oxygen saturation was in the 40's (it should always be at least above 90!), the nurse screamed at me to run and holding Avery tightly in my arms, we tore through the ER to a resuscitation room, at mach speed. The next half hour is a blur of them bagging her, (because at this point she ceased breathing), nurses and doctors running in and out, machines beeping loudly and me collapsing on the floor, sobbing.
I'll take this moment to point out mother's intuition. LISTEN TO IT. Had I not left and taken her to the hospital when I did, she would have stopped breathing at home. If I wouldn't have been in the room with her and noticed...we would have lost our daughter.
The next two weeks were...hell. There is no other way to describe it. She was admitted to the Intensive Care Unit and was given a private nurse, around the clock. She stopped breathing more times than I can count over the first day and a half. After bagging her for almost an hour (off and on), one of the times, they decided to intubate her. She had to be sedated during this time, because she would fight the ventilator. It was determined that she had RSV, obviously a severe case and her preemie body was having a very hard time fighting it off. In addition to that, she dealt with bronchiolitis and a noscomial blood infection, as well.
I have never been so scared, in my life. I would have given anything to trade places with my baby girl. Seeing her suffer and knowing she was in pain, was the worst thing I had ever experienced. Watching a baby in a neighboring cubicle struggle for life and then pass away, while we were there, did nothing to ease my fears. I spent hours and hours holding my baby girl's foot (because I couldn't hold her), whispering for her to fight. "Just keep fighting baby girl. Mommy and Daddy love you so much. You are so strong and so brave. I love you. I love you. I love you."
Two weeks after our hell began, we were able to leave home with a still sickly, still on oxygen and many medications, baby girl. They had taught me how to place a feeding tube and feed her (thankfully, we didn't have to do that for long), to avoid her aspirating any food during feedings. They gave me an apnea monitor that would alarm if she stopped breathing (or held her breath too long. Or hiccuped. Or blinked.) so that I had some peace of mind and could try to sleep. I was terrified she would stop breathing again and this helped ease my fears, a little.
Life continued on and Avery overcame much of that ordeal. Her lungs were very affected by the RSV and ended up in and out of the hospital over the next few years for bronchitis, pneumonia and asthma attacks that I was unable to control at home. In addition, she has had her adenoids removed and tubes placed in her ears, twice. She was the only toddler I knew, that would sit calmly and endure breathing treatments, every few hours, around the clock.
Now, what's my point with all this back story? Avery hasn't had it easy. She has been through more in her little life, than most adults. It has made her tough and it has made her strong willed. I cried for that baby girl to keep fighting...and she continues to fight, today.
I also wonder if any of the trauma she endured as an infant...plays a role in the issues we are dealing with, today.
Avery can be a happy kid. She can be so sweet and loving and helpful. When that girl giggles, you'd be hard pressed to find anyone within ear shot, who doesn't start smiling. She has the most beautiful eyes, that truly define the phrase "window to the soul". I see so much, when I stare into those eyes.
Unfortunately, what I always see, isn't good.
My little girl is angry. Very, very angry. She is sad. And I don't know why.
We used to assume it was just Avery being a toddler and her outrageous temper tantrums would go away as she grew older and matured. She just turned six and these episodes show no sign of stopping.
She's throwing a temper tantrum...punish her. Yup, that's what we thought,too. We have tried time-outs, taking away privileges, sending her to her room, not allow her to participate in activities we did with the other children and yes, she's even gotten spanked. We've even gone the other way and rewarded good behavior with treats, lavish words of praise and encouragement and special one on one time with Josh or I. With the other children, these types of reactions to a "temper tantrum", would typically cause the fit to cease, rather quickly.
Avery is different. We have found that if we respond with any type of negativity (spanking, yelling, ect.), she immediately goes in to a manic rage. These periods can last hours and during that time, she becomes completely unreasonable. Just looking into her eyes, you can see that she is not herself. Her eyes become very distant, she repeats herself and screams excessively, she becomes violent and destructive and she cannot comprehend anything that we say to her. We can repeat over and over, for hours, why she must follow whatever particular rule has upset her, but she will not process what we are saying.
These episodes do not always occur because she is in trouble. She does not deal well with having her routines changed. If we have done something a certain way and then suddenly change it, it can cause her to melt down. It can be something as simple as which chair she sits in at dinner or a change in our plans for the day. With the other children, I can explain the reason for the change and they are able to adapt quickly. With Avery, it becomes the end of the world.
Another thing we have noticed that sets off these episodes is loud noises or repetitive noises. We know for a long time, she had diminished hearing, due to her chronic ear infections. Once the tubes were placed (the first and second time), she suddenly had full hearing and the world became very loud to her. Background noises that she probably wasn't hearing before, now became a source of frustration and annoyance. Sometimes, simply giving her a pair of ear plugs can calm her down.
Many times, Avery will spout off mean things, like her brain lacks a filter to stop every thought she has, from being spoken. We all have mean thoughts from time to time, but she will voice them (I hate you. You're a jerk. I'm going to hurt you.) without it ever crossing her mind that she shouldn't say it out loud. Most times, immediately after she says it, she gets a shocked look on her face, like "where did that come from?" and she will quickly apologize.
This isn't normal.
We know this.
It's hard to admit that something may be "wrong" with your child. It's hard to admit that you need help. It's hard to have people look at you and assume that you are a bad parent. It's hard to know that people think that you just don't know how to control your child. It's hard to know that people are judging you and assuming that you just let your child get away everything, when in reality, you are lost. No one has seen the numerous avenues you have tried and taken, to correct your child's misbehavior. They just assume that...well...you don't know what you're doing.
In reality, we are slowly figuring out what responses, or in some cases, lack of a response, works best with her. We cannot respond the way the world wants us to, because that simply does not work. It may make me feel better to scream and yell, but it is doing absolutely nothing to remedy the situation.