Today is frustrating, I am not going to lie I am feeling weak emotionally. I called the high risk doctor to schedule my next appointment since we did not end up inducing. I see them for several reasons but part of the reason is the ultrasounds because my regular OB has not done one since we found out about Michael and up until that point she had done one at every visit. I was told originally after Michael's diagnosis they would see me every three weeks. My OB doesn't have the same equipment which is another reason we go to the high risk doctor and today I found out the high risk doctors are releasing me. I assume they are doing this because they can not help Michael and she is capable of caring for me. I know that my OB just 2 months ago sent a lady that gave birth to a baby with trisomy 13 to these same doctors and that baby had more serious heart problems. They saw her on a regular basis and she had regular ultrasounds. So now, what they are telling me is that other than monitoring my blood pressure and listening to his heart, no one is looking at the fluid in my belly, his brain, his heart size or his kidneys. Most trisomy babies that make it to this point often die in utero towards the end. I would really like to meet Michael for a moment and now I feel like I have made the wrong choice for our care. I think somehow Michael has been forgotten. I am still convinced that comfort care is the right choice as I do not want him to suffer. Understand these are the only high risk doctors available in our area and they are located over an hour away so I actually do not have another option.
I am a believer that life is a series of choices and we determine the outcome of our life based on these choices. I have made some bad choices and some good choices, but regardless, the path I take, I have certainly on occasion made my road a bit more bumpy by my own accord. Well, initially I thought, well I did not choose this, but then who does right? That is obviously not the issue, BUT how I handle it is a choice and I have to remember that. I am not a victim, I am being given a choice as to how I will handle this everyday and more choices are to follow. I want to thank everyone for being so supportive and thoughtful and kind, I just can not thank you all enough. This has given me time to reflect and while I know I am going to have down moments and angry moments and moments that I do not understand, I feel some strange sense of confusion today. I need to work on that...
Jodi, I started following your blog and my heart just aches for you. Last year my best friend lost her baby boy to Trisomy 13. He was born three weeks early (induced) and lived for 63 hours. He was such an amazing little guy and I know if my heart that Michael is the same. I am so sorry that the high risk doctor is being so difficult. Michael deserves the very best regardless of what his outcome may be. I hope and pray that you get at least what my friends had and receive at lesat 63 hours to make amazing memories.
ReplyDeleteJodi,
ReplyDeleteYour post reminds me of one of my favorite quotes:
"I think life is like a game of tennis. You can't control how the ball comes at you, but it's how you hit it back that matters."
-Margaret Moth
As I was reading through what you posted I kept thinking that you have not had an easy breaks with this pregnancy. It just seems like one thing gets piled up on top of the next. I think that if you listen to your heart and make your choices based on what you hear then you will have what I will call a "successful pregnancy." While things don't always turn out the way that we originally thought they would that doesn't mean that they are turning out wrong.
ps. I'm so glad you went to the Nutcracker!
julie
Jodi,
ReplyDeleteI continue to think about you and your family daily and am very impressed with your grace and compassion concerning your little boy Michael. It is so important for you to be your own (and Michael's) advocate, but you already know that. We're all pulling for you guys.
Jen
Hi Jodi, that is so frustrating! I think you are being too nice, maybe it is time to pitch a big ole hormonal fit? Are they aware of your professional credentials? I was always careful not to scare them off with my professional "qualifications" (you know what I mean) but it might be worth it in your situation. You DESERVE regular ultrasounds for your health as well as Michael's and you DESERVE every effort being made so you and Bill can meet Michael. That seems to be getting lost by the doctors in the shuffle here. I had twice a week ultrasounds to monitor my low fluids, why not you for your high fluid?
ReplyDeleteGRRR, I am so annoyed on your behalf. I'm sending hugs and "hear me roar" love to you!
Shelli
Hi Jodi
ReplyDeleteI became aware of your blog from the Ivillage pregnancy over 40 site where I post as ponymom09. Your story is so beautifully written, very insightful and heartfelt.
I am pregnant now and all seems well but lost a son Luke Michael who was stillborn at 20 weeks last year.
I agree with the previous comment that it might be time to diplomatically play the attorney card to get what you want and need. I am an attorney too and while you don't want to abuse this, it does work. You deserve the medical treatment for yourself and Michael that will give you all the precious time and memories possible.
I wanted to share with you an excerpt from a poem from Rilke that comforted me when I lost my son and still does.
"As one puts a handkerchief before pent-in breath
no, as one presses it against a wound
out of which the whole of life,
in a single gush
wants to stream
I held you to me:
I saw you turn red from me.
How could anyone express what took place between us?
We made up for everything there wasn't time for.
I matured strangely in every impulse of your
unperformed youth
And you, my love, somehow had
wildest childhood over my heart."
Keeping you, your baby and your family in my thoughts.
Kristin