Monday, March 30, 2009

My Story (part six)

First, I want to say how sorry I am that this installment of my story has taken so long to be written! I still haven't received the copy of my chart that I had requested -- and -- I have one heck-of-a train-wreck-of-a life. It's like quick sand. The harder you struggle to pull yourself out-- the deeper it sucks you in. Plus, I've been trying to keep busy - it keeps my mind focused on things other than sadness. My 'busying' is mainly getting out for play opportunities for BigBro and (finally!!!) ordering some draperies / furnishings for our house. The living room has been virtually empty since we moved in (over a year ago). So, I guess you could say it's about time! (Although, honesty, I'd give up everything and live under a bridge -- if you could make such 'trades' -- for Owen to still be here, with us.)

Drum roll, please.

New to My Story? You might want to start here.

In between that first appointment at Dr. Winkler's and Owen's eventual birth a lot happened. We had our fair share of prenatal visits, ultrasounds and lots and lots of disagreements with the doctor. Many days BigBro and I would discuss Owen. BigBro would say the sweetest things. He wondered if we could just put the boo-boo buddy (cold pack in our fridge that looks like a puppy) on Owen and that would make him better. BigBro also surmised that any of the other myriad of things that we do for BigBro when he is hurt or not feeling well would surely work on Owen too. (think: rest / sleep, cuddling, kisses, humidifier, thermometer, band-aids, Tylenol, etc) It was heart-breaking explaining that there are different kinds of 'sick'. That, just like auntie Gail or grandpa George whom were very very sick, some things can not heal or be fixed -- inevitably leading to the person dying.

In the last two years, we have had two deaths in the family (one on my side and one on Hubby's side) and one close friend's father pass. I feel like those deaths had helped prepare BigBro a bit for what was to come with Owen. BigBro & I had several talks about those deaths and over the last 3 months before Owen came about how Owen was 'sick' and might not come home from the hospital. (Before we found out about Owen's condition, we had been telling BigBro that there was a baby growing inside mommy's tummy and he was going to have a baby brother or sister in a few months. So, we couldn't start ignoring the new baby. Owen was already a part of BigBro's life.) My hope is that BigBro will never have a fear of death & that he will see death as just a part of life. We talked about death and I tried to explain my beliefs (as best as I could) so that a 3 year old would understand. Since we moved into the house we're in now about a year ago - I talked to BigBro about how our body is like a house & we all have a soul that lives on forever and when someone dies, it's like their soul just moves out of their house and will move into another house someday. And, someday, when we die, we will see others that died before us, again. He seemed to really understand that explanation. I also tried to stress the fact that it will be a long long time before mommy & daddy die-- because we have to take care of BigBro & see BigBro grow up and have babies of his own before we go. (I didn't want him to fear us dying too).

On the front lines with the doctors... After all the discussions that Hubby & I had about our wishes and me piecing together a birth plan. I had yet to speak with our pediatrician or a neonatologist, but I had printed it out and brought it to my second prenatal appointment (with Dr. Winkler), so that we could discuss it and get some answers to our questions. He did not wish to read our birth plan and had no intention of reading it -- EVER. In fact, to this day, I honestly don't think he ever did read it. Also, on our first or second appointment (or even possibly both appointments) I had mentioned to Dr. Winkler that my attitude of having a c-section was that "it wasn't the end of the world" (even though I'd never had any sort of surgery and was very scared of what the pain and recovery might be like).

In between the second and third Dr. Winkler appointments Hubby & I talked with our pediatrician (Dr. Hadeed). We had a better idea of the challenges that our son might face and what sorts of medical interventions might be undertaken (as well as how those might feel for an adult). After our discussion with Dr. Hadeed, I was actually leaning towards not risking the amnio at all.

It was on our third or fourth Dr. Winkler appointment (when I was just over 29 weeks) that I felt ready to tell Dr. Winkler that we weren't going to do the amnio at all. Surprise, surprise -- he (Dr. Winkler) had other plans. We started the appointment in the ultrasound room (checking Owen's heart because Dr. Winkler refused to refer us to get an echocardiogram) and discovered that my amniotic fluid was starting to measure high. I officially had polyhydramnios. When the doctor came in to discuss this ultrasound finding, he pressured us into the amnio right then and there. I normally don't succumb to pressure (in fact, a cornered opposum comes to mind), but he told us that unless the doctors knew the chromosomes for sure, they (the doctors) wouldn't honor our birth plan. Remember, the birth plan that he never wanted to read and hadn't read at that point? (I know he hadn't read it because although I offered to give him a copy and discuss it, he wouldn't even take a copy to read later or put into my chart). Dr. Winkler told us that whatever we didn't want the doctors to do would be done to Owen (even to the point of futility) unless we did the amnio and knew the chromosomes for sure. I just couldn't bear the thought of the doctors making Owen suffer against our wishes. I said a little prayer and allowed the amniotic fluid to be taken. To any pregnant ladies reading this that haven't done the amnio: the doctor tells you that it feels like a little poke and then some cramping that only lasts a couple of hours... What a load! The cramping was very severe for the better part of two days. At this appointment, they never did do the things I requested (I wanted to know how Owen was measuring, how his lung mass was measuring and we were supposed to check whether he had a VSD or not). And, there is still a part of me that wonders if he was just pressuring us to do the amnio - or if he was telling the complete truth about doctors not honoring parent's wishes.

I had received a phone call from Trish (Dr. Winkler's nurse) two days after my 29 week appointment letting me know that the FISH results were: 90% of the cells were full trisomy 18 and 10% did not flouresce. They were pretty sure that the full karotype would come back full trisomy 18, but there was a small chance that Owen could be slightly mosaic. They explained that because the amnio had been done later in pregnancy that there are more cells that don't grow (like waste from the baby / cells that had already died) and acquire the floresence from the bacteria.

At my 31 week appointment it was the same story. I came in with a list of questions and they again said that we'll look at those things at the next appointment. I asked when they were going to do the random blood sugar check as well as check my blood iron level. Oh, yeah, we'll do that (they forgot). I also asked about fluid reductions (or therapeutic amnios as some doctors call them). Dr. Winkler said that the fluid comes back within 48-72 hours, so they don't usually do anything about the extra fluid unless I was in preterm labor or having trouble breathing. All they were going to do at this appointment was give us was a copy of the genetic karotype letter. Which incidentally said in one part that we were having a boy and in another a girl. It also said that the baby was full trisomy 18 in one part while showing there were 46 chromosomes (impossible with a trisomic diagnosis). Dr. Winkler obviously hadn't read the letter (and honestly didn't really care about us, the patients. We were merely a diagnosis to him). He said that they would get a corrected letter for us at the next appointment. They also scheduled us to see the neonatologist (Dr. Breton Freitag) immediately after. Dr. Winkler's office scheduled this appointment without previously informing us. Hubby had come to this appointment and was expecting to get back to work after only an hour and then this was sprung on us. Hubby was so mad. We would have arranged for BigBro to be with a friend or family member if we had known that we would need to be at the doctor's for so long. I do believe that Dr. Winkler is a good person. In fact, I would say he has a heart of gold. It's just too bad he treats patients like me like "it's just a job". Like he just works at some great big baby factory. No miracles involved. Just a job to be done. Truly, his heart just wasn't "in it". At my 31 week appointment, I remember well that when we were talking about Owen and him being a "him" (boy) -- Dr. Winkler said, "Oh. It's a boy? I don't pay attention." And, he was seriously not joking around. (Sometimes he would joke around when he first came in to see us at a prenatal visit and say, "Hey, do I know you?")

Let me interject here. Dr. Freitag was wonderful. He was able to look past our squirmy, whiny three year old and focus on us. Our wishes, our plans, our questions. He was obviously sweating bullets (when I shook his hand it was cold and clammy), but he was of the mind set that he would make sure that he completely understood our wishes and communicate those wishes to all the other NICU doctors. Absolutely all of our wishes would be honored. He also explained even more about medical interventions to us (more than our pediatrician had)... And if I had to do it all over again, this is what I would have done differently. I would have met Dr. Freitag much much sooner. He is the one that helped us finalize our birth plan. Then again, he was the only doctor that actually looked at it. I think instead of "Medical Director, NICU" the new subtitle for his business cards should be: Care and compassion served daily. Anyone that lives in the Portland, Oregon metropolitan area that might need NICU care: The drive to the Legacy Salmon Creek Hospital in Vancouver, Washington is totally worth it! Check them out! They have great doctors and each baby has their own large room in the NICU. St. V's and Emanuel don't. At those two hospitals the NICU is one great big room with (no privacy) rows and rows of babies in isolettes. (One other side note about this discussion with Dr. Freitag: I asked him not to give private information, but generally, when was the last time that they had a Trisomy 13 or Trisomy 18 baby (at the Legacy at Salmon Creek)? A year and a half ago. That explains the 'sweating bullets'.)

So, after asking and asking Dr. Winkler and not getting answers or getting blown off... Plus, he had definitely brought up the c-section thing. Oh yeah, let me tell you about that. Over the course of three or four appointments he went over (and over and over!) how a c-section is a major abdominal surgery (yes, it is and you do them everyday) and what all the possible complications could be. How he could nick my bladder and I could have bladder problems the rest of my life. How he could nick my bowels and I could have bowel problems the rest of my life. How I might have to have a hysterectomy to save my life and never have other children. Which wouldn't matter anyway, we aren't having any more. And on and on. Everytime we had this discussion, I explained that as a woman, everytime I get pregnant, I know that "this could be the time I end up with a c-section". And, all the risks to a c-section that he mentioned were the same whether the child I was carrying was normal or not normal. Dr. Winkler also tried, several times, to use the argument that, "Trisomy 18 is a lethal chromosomal abnormality and the baby is going to die anyway". As much as he tried to shove down my throat that it wasn't what he recommended or what he wanted to do (he wanted me to refuse fetal monitoring and refuse a c-section) -- I shoved down his throat: I will try for a normal delivery, but if Owen comes under stress and it means the difference between him being born alive or not -- then I would want a c-section. Also, to help him understand that I did understand what it meant to have a baby with Trisomy 18, I also explained that I was well aware that Owen could live for only a few minutes and that I would accept whatever time we were given. I even went as far as to explain that I knew that meant Hubby maybe the only person with Owen (and making all of the decisions about Owen's care) while he's alive because if he did live only a few minutes, I would still be on the operating table being sewn up and would not be able to see him until after he had passed.

Because we had argued the same argument over the course of several appointments, I finally had enough and put it bluntly: I understand that a c-section isn't what you would choose for yourself or your wife, but if that time comes -- Are we going to have this discussion again - or are you going to honor my wishes? (If I didn't receive a 'Yes' or 'No', I was ready to walk out and, yet again, find a new doctor) Finally, a reluctant YES. You'll be happy to know that at subsequent prenatal visits, this subject never came up again - yeeeeaaaahhhhhh! (Maybe it was because in my attempt to explain that I wasn't like all of his other patients - WE both discovered that we are both Republicans)


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