Support Team

Yesterday feels surreal. I wanted to write yesterday to provide everyone with an update but didn't feel ready to write. I don't feel ready right now. Writing more details of why we had to meet and what we had to discuss makes everything more real.

So many thoughts and feelings are swirling inside of my head and my heart.

Again, CHOP was amazingly supportive, caring, responsive and thorough.  

I had my fluid checked and it actually has dropped a little which I am so grateful for. I am so glad I don't need a reduction. My fluid is still above average but no need for a reduction yet! Hooray for not needing a long needle stuck into my abdomen!!

We met with the neonatologist, case worker, and psychologist. This team is experienced in dealing with cases just like ours where the baby is unlikely to survive long past birth. The neonatologist talked to us for a while about how things will run medically when Alexander is born. He assured us that palliative care is the right option given Alexander’s measurements. This is very comforting because the decision between palliative and intensive care feels like one that would be unbelievably difficult to make. He also explained what the birth will look like and what we can do to make Alexander more comfortable after he is born.

We then talked to the psychologist. She empowered us to make the decisions that feel best to us. She was very warm and kind and said she was in charge of helping our heads and hearts. :) I really really liked her and was happy to hear she will be meeting with us every week when are at CHOP and that she'll be present in the OR for Alexander's birth. She asked us how we are doing and complimented us on our current outlook and attitude towards what we are going through. She said that it usually takes her weeks or months to get couple to where we are now (able to talk about it, thinking through details and making decisions on what is best for our family.) For some reason it was very comforting to know that she is happy with our progress of dealing with this situation. Before she became and psychologist and started working at CHOP she used to be a doula. I absolutely love that and I'm glad she's here to support us.

After meeting with this team, we met with the child life specialist. This is the person who works directly with siblings, makes sure everything runs smoothly and helps us figure out detail of how to make our time with Alexander as special and meaningful as possible. She coordinates any keepsakes and has done many things in the past for families. Things we can do include making a mold of Alexander’s hands/feet, taking hand/foot prints, taking pictures, etc.

I could not feel better about being at CHOP, we are being so well taken care of.

To My Husband

My wonderful, thoughtful, supportive, loving husband, my rock, my everything. The only one I truly open up to, the only one that holds me when I cry. Thank you to the man who has gotten me through this, the one that has been there every step of the way, the perfect earthy father to Alexander. The one who loves him like no other. The one who talks to him and feels his kicks and rolls every chance that he gets. The one who reminds me of a God's grace and goodness, the one who prays with me at night, thanking God for Alexander. The one who takes care of me in so many different ways. I am so thankful for my husband, for his support and his amazing love of our little family.

Birthdays

Yesterday our doctors gave us Alexander's birthday, October 20th. As painful it is to have a specific date, it feels good to know. It is heartbreaking to think we only have 4 more weeks with our son.

Alexander’s birthday is a week after mine and 2 weeks after my dad's. The doctors had no idea but his birthday is also sandwiched between both of my Grandfathers which is also very special to me.

After his birthday, if you feel inclined to send a card, I would rather a birthday card for Alexander than a sympathy card for me. In my heart I'd rather celebrate his life rather than the grief we will encounter. Please feel free to write directly to our little boy and send him your love. Through this journey knowing that he is loved by so many has meant so much to me.

Alone

September 17th

So many prayers, so much support and I feel alone.

So many tears fallen for me, for Alexander, and I feel alone.  

Surrounded by family, friends, by toddler smiles and kisses and I feel alone.

I have reached out and women have reached out to me who have dealt with this type of loss, who have been in my shoes and I still feel alone.

Jason even doesn't know Alexander the way I know him, he doesn't feel his kicks and know his wiggles. This experience for Jason is completely different, and I am alone.

The word of God say that He is with us and I still feel alone.

I am alone and it is not just a feeling but a fact. I am Alexander's Mom and the only one who is hurting like this....

....and it is hurting so much.

I am praying a new prayer. I want and need to feel God’s presence, to be surrounded by His love and reminded of it throughout the day. With His presence I know I will feel comfort. I know eventually I will not feel alone.