Two days ago Joe and I returned to CHOP for our third visit. The purpose of this visit was to monitor Mira's growth and meet with the palliative care team again. We started with an ultrasound to take measurements and check for changes. There has been no change in Mira's condition, but her head continues to grow at an accelerated rate. At our first CHOP visit I was 18 weeks and Mira's head was 20 weeks. At the second visit I was 24 weeks and her head was 30 weeks. This time I was 27 weeks and her head was 38 weeks. Her head grew 8 weeks over the course of 3 weeks. This means that the doctor was ready to schedule my c-section.
Mira will be born on December 18th. The doctor said she felt very confident that they would not need to move this date up, even if she continues to grow very quickly. This will mean Mira will be born at 34 weeks. The doctors are doing their best to ensure I deliver before I am at risk for any long term complications (like damage to my uterus) but that Mira is old enough to survive birth and give us the greatest chance of meeting her alive. Though babies are considered viable at 24 weeks, Mira's lung and heart concerns make her much more fragile. Our next visit will be on Thursday next week.
Joe and I will spend the next 6 weeks celebrating Mira's life to the best of our ability. But there will also be times of fear, depression, and mourning as we know we will be saying goodbye to her so soon. We have taken her to experience many things over the course of my pregnancy and we will continue this. Mira has: visited Dimock (where Mommy grew up), hiked at Salt Springs State Park, gone paddle boating on Memorial Lake, gone walking at Millersville University and tasted college lunch, gone to the movies, been out to dinner with friends, heard a concert at F&M, explored at Aquarium Adventures, rode on a train, and has been read many books and sung many songs. This weekend she will experience an Eagles game in Philly and next weekend go to West Chester University (where Joe went to school). Over the next six weeks we will give Mira as many experiences as we can, but will also focus on just spending time with her and talking to her with love.
Getting the date for her birth was surreal. It is another time where it hit me that this should be such an exciting date to hear, my daughter's birthday! However, when it almost certainly will also be the day she dies, there is less to celebrate. Having the date is helpful to give us more control in planning and to ensure everything is ready. But it also tells us exactly how long we have left, making things seem more and more real.
The psychologist that is helping write our birth plan went over the begining of it with us this week. When she reached "Ali will hold Mira as soon as she is able in the OR" I lost it and started crying. I want to meet my daughter so badly. This is something I asked for (skin to skin contact asap) from my first OB visit, back when we knew nothing. The fact that this is still going to happen is wonderful, but also heartbreaking due to the difference in the reason for it. I originally wanted to hold her right away due to the research showing how good it is for bonding and attachment, and just wanting my baby in my arms right then! Now I want it so I don't miss one second of her short-life.
If you were here beside me...
If the curve of you was curved on me
I'd tell you that I loved you, before I even knew you
'Cause I loved the simple thought of you
And there's distance and there's silence, those words have never left me,
They're the prayer that I say every day
Come on, come on, come here, come here
The lone neon lights and the ache of the ocean
And the fire that was starting to spark
I miss it all, from the love to the lightning
And the lack of it snaps me in two
If you were here beside me...
In the arms you said you'd never leave
I'd tell you that it's simple and it was only ever thus
There is nowhere else that I belong
(Snow Patrol)
I ask for your continued prayers during this time. The things we most need prayer for are:
- Peace for Joe and I, so we can enjoy Mira's life and make plans for her birth and passing without becoming to anxious or overwhelmed
- Understanding in our family and friends so they know best how to support us AND care for themselves during this time
- Support to be everywhere for our friends and family (especially our parents) that are also struggling with Mira's diagnosis
- That our plans for her birth will go as smoothly as possible
- That the memorial service will be completely planned soon so we can focus on the time we have with her and not worry about planning while we are grieving
- That I will be cleared next week by the anesthesiologist to deliver at CHOP (the OB is concerned that my sleep apnea could complicate surgery and I need to be cleared to deliver at CHOP since they are a children's hospital and do not have an adult ICU, the doctor is not too worried this will be a problem, but it is very important to me that we deliver at CHOP)
- That I will not go into labor before my scheduled c-section
- That I will stay physically healthy until Mira is born
- That Joe and I will continue to find ways to support each other and keep our marriage strong
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We have received so many card with heartfelt words.
Looking at this wall of cards strengthens us when
we feel overwhelmed. |
So many people have told me how Mira's life has already impacted them. I love hearing this. People I didn't even realize cared so much, or even strangers, have told me. There are people praying for us that we have never met. There are people reaching out to us that we have not seen in years. We are so thankful for all this support. We read your cards and texts to Mira. We tell her how much she is loved by so many people. Sometimes it is hard to respond to messages because of where we are emotionally. I get behind on returning calls and messages. But know each message is received and loved and I do my best to respond. Thank you.
Life is beautiful...
Let the monsters see you smile
Let them see you smiling
Do I hold you too tightly?
When will the hurt kick in?
Life is beautiful, but it's complicated
We barely make it
We don't need to understand
There are miracles, miracles
Yeah, life is beautiful
Our hearts - they beat and break...
I will hold you tightly
When the hurting kicks in
Life is beautiful, but it's complicated
We barely make it
We don't need to understand
There are miracles, miracles
Stand where you are
We let all these moments pass us by
It's amazing where I'm standing
There's a lot that we can give
This is ours just for the moment
There's a lot that we can give
(Vega 4)
