This week we have a fetal MRI scheduled. This will give us a more in depth look at baby B's spine
to see where it splits. An ultrasound showed it was right at the bottom of L4, beginning of L5. Hopefully this will confirm that, or place it lower. (I'm crossing my fingers for lower!) We will also get to see the Chiari malformation in more detail.
A week from today is the BIG appointment. Our day will start at 0730 at Abbott Northwestern and the Perinatology Clinic of MN.  From there we will go to The Mother Baby Center and meet with the NICU staff. We will also get a tour as this is where baby B will be for the first couple of weeks of his life. After that, we will get to meet the neurosurgeon that will be doing the surgery to close the spine. We will meet with a doctor that specializes in sb, a social worker, and a nurse manager that will be our go to person. We will also get another look at baby B as they do a growth ultrasound. I believe our last appointment is scheduled at 1545. I will be wiped after that, but hopefully I will go to sleep having most of my questions answered.
After a lot of "why me" questions to God, I was lead to the Bible to look for comfort. My aunt had sent my a verse that I took great comfort in, and I was looking in up when I came across the story of Hannah and Samuel. It's about a faithful woman who prays to God for a child. She tells God that if he grants her that request, she will give her son to the Lord. God grants her this and she brings Samuel to the temple to serve God all the days of his life. This story brought to mind Abraham, Sarah, and their son. God granted them a child in their old age, but then asked Abraham to sacrifice the child. For Abraham's faithfulness, God spared the child. At this point, my mind went to Mary, mother of God. The holy spirit told her that she was chosen to carry a special child. Many times, over the course of Jesus's life, Mary had to let him go. First when he was a child and went to the temple, and last when he was crucified. My thoughts, besides I'm in the company of some great women, were feelings of honor and blessings. For whatever reason, GOD CHOSE US to be this special child's parents. I don't know why. I'm not as holy, honorable, or faithful as these woman of the Bible. But yet, I am being given a child whom I have prayed for, asked for, and I know that he will live his life for the glory of God. What parent doesn't want that?
There are still moments when I start crying. When I see a child in a wheelchair, my heart sinks. These are not things I want for my child. But I'm trying to focus on the positive. On the silver linings to every cloud.

Heartbreaking news

We've had a week off from the hustle and bustle of everyday life. We had a week to come to terms with the news that our baby boy (due the end of September) has Spina Bifida (sb). Most days are fine. Our baby is constantly on my mind, but I push the fact that he has a "defect" to the farthest corners of my consciousness, concentrating  more on the fact that he is going to help make our family complete. But today, after getting home from a week up north, it's the only thing on my mind. Waiting in the mail was a letter from the perinatologist's clinic I was seen at 11 days ago. The specialist I was sent to that told us that our baby has mylemenigecele. The most severe form of spina bifida. Apparently, they send follow up letters that detail everything that was talked about at our 3 and a half hour appointment. There, in black and white, it was: "Our ultrasound today confirmed the finding of spina bifida, and associated chiari malformation, and clubfeet." Ouch. I don't remember any other words ever said to me that cut me to my core quite like those did. 
Among the mail was a card sent from a well meaning friend. The card said that they were sorry for news and knew we had "to make the hardest decision" we will ever have to make. That no matter what we decided, it would be the right decision for us and our family. I'm not going to lie. I wanted to rip that card up into the tiniest pieces, crumple them together, and burn them in the hottest fire I could build. I don't know how this person meant what they wrote. What decision did they think we had to make? I can tell you how I took it. I can tell you how I took a couple of other people asking me if we were going to continue our pregnancy. NOT well. Why, in God's holy name, would this child I am carrying- MY CHILD- be any less worthy of life than any other child without a "defect"?! So my child has spina bifida. Would you abort your child if you found out they had an extra toe? I know the difference in diagnoses are huge, but my child is not any less loved or less perfect in my eyes. If you know me well enough to have the audacity to ask that question, then you would already know the answer. If you don't, you obviously shouldn't be asking it!
Waiting to hear what was found on the ultrasound was terrifying. A million different thoughts run through your head. I was actually relieved (a little) to hear that it was sb. At least it is compatible with life. At least I would get to hold, kiss, and bring home my little guy. That being said, I'm still very angry with all of this. I'm mourning the loss of the life I had imagined for my baby boy. I'm angry and sad that he will have to endure so much in life. He will have so many obstacles and I won't be able to fix everything. No parent wants this for their child and I am no different. I pray for the strength and acceptance I will need to help my little man live his life to the fullest. 
My thoughts, feelings, my life, really feel jumbled right now. Some days, I am accepting of the diagnoses. Other days, I can't believe it's happening to our family. I did everything "right". I took a prenatal vitamin before pregnancy. I didn't go in hot tubs, or saunas, or drink, or smoke. The hubby and I don't have a genetic history of birth defects. So why is this happening to us? God knows I am not a patient person, so I don't understand why he would give us a child that needs parents who are. I just don't understand.

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My life- as a wife, mother, sister, caregiver, daughter, career woman- uncensored.


Liberal Catholic. Working mom. Chronic pain warrior. Opinionated introvert. I speak fluent sarcasm. I'm married with two kids- a girl and a boy. My son was born with Spina bifida, hydrocephalus, Arnold Chiari malformation, and bilateral club feet. I may blog about food, politics, religion, medical updates, or our life in general.

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