The Reason

This blog was started as a way for me to record our, my daughter Luisa and our family's, journey with Amniotic Band Syndrome that presented itself on the head of our sweet daughter. And has turned into a journey of dealing with a fatal prognosis, and the very premature death of our sweet baby. My great hope is that we might be able to help at least someone, if not more, by sharing this experience.

Wednesday, January 5, 2011

At The Hospital

We checked in to the hospital on January 1, 2011 at 1 a.m. When we got there it was very quiet and there was no one there except for a few nurses here and there. From the very minute that we got there we were treated very gently and with great compassion and kindness. After all the craziness of trying to get in to the hospital, I really didn't have high expectations for them. Although I delivered my youngest son there and had a great experience, the agonizing wait killed my hope of having a good experience there. But they absolutely, 110% redeemed themselves. The nurse went through some information with me, the on-call doctor came in and spoke with me. And again, they were so kind and gentle. The started the induction via vaginal pill at around 3 a.m.

I slept for a few hours, and when I awoke I felt some mild contractions. I got another round of the pill at around 9 a.m. ( it has to be done every 6 hours) and within a couple of hours the contractions were much stronger. By around noon, I was in pain that was just on the brink of becoming unbearable. I contemplated getting an epidural, but I really, really did not want to. For a couple of reasons. One, they had told me that this induction could take as long as two days, and the epidural would wear off long before then. And although you can get more, with each dose the epidural becomes less effective. The other reason was I did not want to be numb. I wanted to feel whatever I could of what was left of my time with Luisa. The nurses thought I was kind of weird, and I even thought that I might give in because I am a pansy when it comes to pain. But I wanted to give it my best shot. So I discussed it with my nurse and decided instead to get a pain killer given through the IV just to take the edge off. And it helped a lot. It took the edge off, but I could still feel everything. I wasn't numb.

I had strong contractions, I had back labor ( which I am still sore from) and at around 1p.m. I felt that intense pressure and urge to push. I freaked out for a couple of different reasons, I think. I was worried about pushing without an epidural because I have never done it before. I was worried about my first reaction of seeing Luisa's small, precious, yet deformed body. I had quite a bit of flexibility with the entire labor and the delivery was just as flexible. I kneeled on the bed, breathed a couple of deep breaths, and the bag of waters came out, in tact, with baby Luisa inside. Once the bag of waters fell onto the bed it broke. I was so sad that I couldn't feel her exit my body, I just felt the bag of waters ( which felt like a medium sized water balloon exiting my body, a very strange sensation). I cried and cried because she was so small and I couldn't see her at first. The nurse and the doctor gave me a few moments of crying, and then swiftly moved into action.

I just want to insert in here real quick that the two birth defects that she had, as I mentioned before, were Amniotic Band Syndrome, which that then caused Acrania. We thought we saw a faint mark on the top of her head and coming down onto her face where the band had been, but the band itself was not present. The brain was not exposed to the air, there was a very soft tissue covering it, but it was very soft. I think I remember being able to see the form of the brain under the tissue.

The doctor checked out Luisa, wrapped her delicately in a small cloth, and handed her to my husband, by my request. I had the opportunity to carry her in my womb for several months, I felt her move, I felt her life, I felt her spirit. Unfortunately, my husband didn't. I really wanted him to hold her for the first time. That was the most special moment of this experience. I saw him immediately bond with her and fall in love with her just like he did with our other two boys. To say that it was special doesn't describe it enough, but it was so, so , very, very special. I fell in love with my husband all over again, but ten times more. Then it was my turn. Tears welled in my eyes, my heart swelled with love and tenderness. I was amazed with her tiny features and so sad that this was the end of our time together here on earth. But peace was there. We had my husbands parents bring our boys to the hospital to say goodbye, as much as a barely 3 and 1 1/2 year old can, we had the Now I Lay Me Down To Sleep Photographer take some pictures which are so, so precious to us.

We spent a little while longer with her, and then it was time to say goodbye. We prayed together, and then peacefully let her go.


  1. What a beautiful story about your precious daughter's birth. And what a sweet picture of the three of you. Thank you for sharing your story.

  2. Such a beautiful story of Luisa's birth despite the difficult circumstances. Your decision to not have the epidural makes a lot of sense. I've heard similar thoughts from other moms too. I'm so glad you were able to write this all down and share it with us. Such a precious moment in this photo and such a precious way of telling about Daddy's first moments of holding Luisa. Sending you hugs and prayers!

  3. Reading your story brings back a lot of emotions. Nothing I can say can take away the pain you're going through right now, only time will help it lessen. Take care of yourself, and each other. Sending a big hug and prayers!