March for Babies

Sunday, November 17, 2013

Live, Learn, Teach, Prevent

On this day when. we recognize premature birth around the world I cannot help to count our blessings. 

We started out in a panic, I thought we would lose the baby, Tim thought he was losing us both. We made it through, not at all unscathed. 

Then came the phone call wherein I had to tell my husband that he needed to come down to the hospital because our two-year-old had cancer and they had checked us into a room straight from the ultrasound when they found the grapefruit sized tumor in her liver. This, it turned out, was most likely caused by the nutritional supplements given in the NICU. We wondered which side of Karma we were on. Double wammy bad stuff but we again made it through. 

There are other lingering preemie-related issues we are still dealing with. Spastic Diplegia, a form of Cerebral Palsy which requires Amanda to sleep in night splints that stretch her muscles. These are uncomfortable and leave red mark on her skin. They haven't improved her range of motion but we haven't lost any either which is good enough at this point. She has also undergone extensive testing, both psychological and neurological to determine she is living with ADHD-C (combined inattentive and hyperactive) and struggles with Executive Functions (organizing thoughts, prioritizing steps to complete tasks, etc.) she also suffers from sensory issues which interfere with dressing, sitting still, etc. That being said, she is SO smart and a good student. 

I am sure we are not yet finished discovering ways in which a premature birth will effect our daughter's life. Life will not be easy for her. Luckily, we know she is a fighter and resilient and somehow, continues to wind up with the best case scenario in bad situations. 

Not everyone is so lucky. 

Today is not about how bad we've had it (pretty bad, odds were against her coming home both from the NICU & from the cancer) but rather about pulling together to make it through the rough times and hopefully prevent these things from happening in the future. Within our pnuclear family this means Amanda will be an only child. This was not an easy decision or one made lightly. It meant changing my whole world view and long-term plans. On a global scale it means getting the word out about premature birth, signs & symptoms of preterm labor, maternal and fetal healthcare leading to PREVENTION. 

I was lucky enough tonight to kiss my seven-year-old at bedtime and tell her I love her all the time, even when he is angry at me (which she was at the time) and I am so grateful I was able to do that. I feel badly she will struggle in this life because she didn't cause any of this. None of it was her fault. We are finding in medical records that it wasn't my fault either. I had good insurance and good prenatal care, more than most considering the fertility treatments, but when I went into premature labor I did not recognize the warning signs. If I had, maybe we would have gotten to the hospital sooner, maybe they could have stopped my labor, or at least given her some steroids to develop her lungs before she was born. Can you say Maternal Guilt? (In my defense, the hospital didn't recognize it as labor either until my water broke.)

So, I leave you with this, the signs of preterm labor. Study them. Share them with anyone of childbearing age. Learn and teach so as to prevent. 


Sunday, October 13, 2013

Room for Improvement

Store bought green bean next to my home grown organic cucumber. Looking at the positive side, I have a huge opportunity to learn new things! :-/

Wednesday, June 19, 2013

Stay the Course

Last summer Amanda was seen for the Spastic Diplegia Cerebral Palsy in her ankles. She has always had less than normal range of motion in her ankles. The low side of "normal" means that when your leg is straight, you can point your toes back towards your nose (at the ankle, not the toe joints) and the angle of your ankle would be around 15-degrees. Amanda has always ranged in the 5-10 range. We have done stretches, we have taken her to physical therapy where they worked with her over and over to walk on flat feet instead of up on her toes. The toe walking will not require medical intervention until/unless she were no longer able to put her heels all the way down on the floor. This is not the case, she can walk with "flat feet" when reminded. The school PT told us to give her verbal prompts in order to accomplish this (nag her) and we decided this was not going to happen. The kid hears enough nagging without being criticized for how she walks...all.the.time.
Our concern has been, as she grows taller the muscles and tendons could get tighter and the range of motion in her ankles could get worse. This could lead to walking problems, knee, hip or back problems in her future could be avoided now if we stay on top of things.  So, last summer we started using splints on her as she slept at night. It took months to get them properly fitted trying this material and then that then changing again to get the right fit so the pressure wasn't too much on the top of her foot (it created terrible red marks which lasted all day long) and they were very uncomfortable for her. We finally got the right fit and have steadily increased the tension on them to work our way up to a 4.5 out of 7. The doctor today said, that even after growing an inch and a half this past year she has not gotten any worse, though no better, in her range of motion. He said if she HAD gotten worse (tighter) he would recommend serial casting, literally a series of casts on her legs pointing her toes higher and higher to the sky forcing the muscles in her calves to stretch. Sounds perfect for an active 7-year-old in the summer, huh? However, since she has grown and maintained her not normal but not horrible angle he is willing to stay the course and watch how she does with the expected growth spurt that occurs around age 7 or 8.
This is good news as we continue to make payments on the thankfully not useless splints we dutifully strap on each night and take off each morning. Also, they still fit her after this year of growth so we won't have to buy new ones to stay the course. *Whew!*

Sunday, May 26, 2013

"On Writing"

Thinking about things that I enjoy and things that seem to come easily for me and things that would make me happy,  I kept coming up with the same thing...writing. I am an Ok writer, not great. I aspire to be a Mary Roach or even a Julia ( Classy, intelligent and funny ladies.  Hey, I said that's what I aspire to, I am certainly not there yet! My writing has a conversational tone which people seem to enjoy and I have been told I should write a book, but to be honest, I write for myself about things that concern me at the time. For years I have said that I do not write when I am happy which shows that writing is a form of therapy, of processing, of cathartic expression. It is selfish and self-absorbed and yet, I do love feedback on what I have written. 
I miss blogging. I did it a lot when we were in the thick of infertility treatments and then going through the NICU. At the time I was blogging anonymously which gave me the freedom to say whatever I wanted as long as I didn't let the cat out of the bag about who I was or who might have been involved in a particular situation. Then I had to learn about a different type of blogging during Amanda's cancer treatments. I was factual and tried SO HARD to keep it all sounding upbeat, even when we were struggling SO HARD to keep putting one foot in front of the other. That blog was not anonymous so I felt very exposed. I know that I didn't share as much raw emotion just for that reason. I was facing enough (drama/trauma) without the fear of someone possibly criticizing something I may have said or done as a parent/employee/writer.  I was too vulnerable at the time. 
Then, as a way to support World Prematurity Awareness Day with Blog for Preemies, I went public with my original blog (after going through it post by post and editing anything that may implicate anyone else poorly in a public manner which seemed more innocent in the light of a pseudonym). I was told I was brave for "coming out of the closet" in that way. 
Then too, with the increased popularity of Facebook and Twitter I actually started thinking in shorter form prose. How can I express (share) this idea/situation/event in as few words as possible? While it did wonders for my word economy, it lead me away from the writing and I have come to realize...I miss it. I like the feel of writing, I like the typing as my thoughts flow straight through my fingers and onto the screen. I miss re-reading what I just typed and thinking, "Yes, that sums it up very nicely". I miss the act of writing. So, maybe I should start writing again. Worst case scenario is that no one leaves me feedback. Best cast scenario is I get to clear my head. I think it will be good for me either way. 

*Since this is about writing and partly inspired by the interview I read this morning with Stephen King who is far and away my favorite author (so versatile), I shall steal the title of this post from his memoir  On Writing. SK writes 1500 words each morning, just like someone who would get up and run two miles every morning. Keep up the habit and good things are bound to happen. So, write on...

Friday, March 22, 2013

Found Myself in Pandora's Box

So we have been asked to participate in a medical study on Hepatoblastoma the tumor Amanda had in her liver. (I just LOVED writing that in the past tense.)

The majority of the questions were easy to answer, others I found myself at a loss. In the end I requested copies of our medical records from the Fertility God's office, my OB's office (more challenging since she retired and I moved to a regular old family medicine doc at a different office) and also the hospital where Amanda was born. This is the one I have been avoiding for...oh, about 7 years now.

I have been wanting to ask, wanting to read, wanting questions answered and yet, I don't really want to know the answers. At first it was "What the FUCK happened?!?!?!?!?!?!?!!!!!!!!" and I thought as long as I had that attitude I might be perceived as just bit too litigious for their liking, which of course lead me to conspiracy theories of the medical records people editing out anything they thought I might not like.

After that I needed to get past my own fears that the records would reveal that the preterm labor/birth were caused by something that I did wrong. No one on earth can out-guilt my own thoughts that I did this to my child. I wanted a baby so badly I took any drug they suggested might help me do that. I continued seeing my OB even after I felt she disregarded my thoughts and concerns because she was a family friend from way back. I had to keep working while Amanda was in the NICU so I didn't spend every waking hour at her bedside (which wouldn't have helped her in any way but at least I could say I was there.) I misunderstood her pediatrician regarding the "fullness" (lump) in her abdomen allowing the tumor to grow to the size of a large grapefruit before we revisited it and discovered it was actually lethal. Do I have guilt? Oh boy, do I have guilt. What if the cancer turned out to be related to one of the treatments she received in the NICU, or possibly the fertility drugs I'd taken to conceive her in the first place?

Hepatoblastoma is a rare form of cancer in children but it is more prevalent in preemies. They do not know yet whether it is related to low birth weight, immature liver cells, treatments received in the NICU or something else. That is what this study is looking into. But, a superficial look at things would suggest that the number of infertility treatments has increased in that time and the number of preemies has increased with the increase in fertility treatments which would then lead to more cancers related to those early births. The number of Hepatoblastoma cases has DOUBLED in the last twenty years. Thank goodness they seem to have figured out a good treatment program for it, but still, who would to go through that if they didn't need to?   Amanda was diagnosed at STAGE IV due to the advanced state of the tumor, her age and the fact that it had already metastasized in her lungs. I still believe her doctors were shocked at how well she responded to the treatments. It helps when your kid is a rock star like mine!  If they can look back at her records and find a common factor with the other kids in the study maybe they can pinpoint a cause which may then lead them to a preventative measure in the future.

 So, with all this for the greater good of all mankind prompting me to finally ask the questions and see the answers...I still don't really want to know. I'll look and try to put my self-judgement aside but seriously, not looking forward to getting those reports in the mail. Mostly because, in essence, I DID do this. I'll just have to suck it up and take responsibility for my part. :-P