Brielle’s Utter Dislike for Dr. Seuss

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Yesterday, David went out and bought Brielle a bunch of new books. I told her all about them and she did lots of happy wiggles. She especially wiggled for a Winnie the Pooh book he’d bought her. So I read that one to her. She loved it! She wiggled her little butt the whole time. Then I read her a Dr. Seuss book David had bought her. Nothing, she did not like it. No moving, no excitement. Not even happy snuggles, where she’ll curl up on one of my sides. Nothing. She really hates Dr. Seuss. Who knew a baby could hate Dr. Seuss so much? David said that this cannot be. She has to like ’80s hair bands and Dr. Seuss. I told Brielle I’d protect her from both, especially the ’80s hair bands.

Antidepressants & Birth Defects

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Solid information on the risks of medications during pregnancy is often hard to come by. Article here.

If you’re taking an antidepressant and are of childbearing age this post is for you. I really don’t want anyone else to have to deal with the loss of their child, especially if it’s preventable.

“The analysis did find an association between birth defects and the antidepressants fluoxetine (Prozac) or paroxetine (Paxil). That included heart defects, abdominal wall defects, and missing brain and skull defects with paroxetine, and heart wall defects and irregular skull shape with fluoxetine. The relative risk increased 2 to 3.5 times, depending on the defect and the medication.”

Prayers

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Please keep me in your prayers. It’s getting very hard to breathe. Draining the excess fluid can cause preterm labor and she could be poked by the needle, especially since she’s a wiggle worm. So please pray that we’ll know what to do when the time comes (which could be very soon) and that she’ll be okay if we have to drain.

Welcome to Holland

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When you get pregnant, besides the fear of miscarriage, the fear of having a child with a disability is perhaps the biggest fear you have. It certainly was for David and I. How do you take care of a special needs child? What will your life be like? It was uncomfortable to think about. And it was scary, not because the child was scary, but because the whole process was incredibly unknown. We were afraid because of our own ignorance. I would think we are not alone when it comes to this fear. And it’s not something that most people talk about. It’s kind of embarrassing to admit you’re afraid of a situation like that, isn’t it?

Yesterday, as David and I were leaving Dekalb the head NICU nurse (correction: I was misinformed, she is not the head NICU nurse lol) shared with us a very personal and beautiful story as well as this poem, “Welcome to Holland.” As she told me about the poem, I thought that it could not be truer. Our perspective on special children is completely different now that David and I have a severely special needs daughter.

Whereas before it was something to fear, now it is nothing. She’s our daughter, we don’t see anything strange or different about her. She’s just Brielle. The fear of all the work involved with her doesn’t seem like work anymore. It just feels normal. I’m her Mom, if she needs me to clean an open brain dressing, then I will change her dressing. If she needs me to give her supplemental oxygen, then I will give her supplemental oxygen. It’s not so scary.

Love doesn’t work that way. Love doesn’t say, “I can only do this much, but I can’t go any farther than that.” Love doesn’t have limits. And if loving my daughter means that I have to hold her and help her pass peacefully and comfortably, then I will hold her, and tell her it’s okay. I will put on my best face and surround her with as much love as I can.

David and I don’t feel as if we were punished or burdened with a child that is different. If anything we feel blessed. Before we had her diagnosis I was thinking about how I would teach my children french and english. Having a child that is different puts everything in perspective. Sure it would be nice if my children were bilingual, it’s wonderful that we have doctors, rocket scientists, straight A students. But if the only thing my daughter ever does is smile or move her little arms, well, that really is enough.

And really it comes down to, is my child happy? Is my child loved? Yes? Then I have done my job as a mother. There’s so much that the world tells us we need to do to make our kids succeed or do in life. And maybe you’ll disagree with me on this, but those things don’t matter. Life is too short and we really have no idea how long we have with each other.

Brielle’s life, a special needs child’s life, is full of love and innocence. What is better than that? I told David last night, if we have another special child, it’s okay. I’m okay with it. I don’t want to lose another child, but if I get the opportunity to shower another child in love and be equally loved in return, I can do that. She’s such a happy baby, what is there to complain about or be sad about? Holland is just as wonderful as Italy.

Our Meeting with the Neonatologist

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We had a wonderful meeting with Dr. Armand. He was kind and receptive to answering the questions he could, for those questions he couldn’t answer he forwarded us on to a pediatric neurosurgeon in Atlanta. David and I so appreciate his honesty and his willingness to give us an idea of what is to come and what they can do. I cannot begin to explain how much it means to me when these doctors and nurses are kind and compassionate. They have heart and it makes me feel at ease. I can trust that my daughter will be treated well, with compassion and respect. I couldn’t ask for more. And after yesterday’s disappointment it brought immense joy to David and I today to know that there are wonderful and kind medical professionals out there. We feel that God has put us exactly where we need to be and we are very grateful.