As The Story Goes...

I've wanted to start a blog for a while, but now that I have two snuggle bunnies instead of one it has been a little difficult finding the time to sit and type out my feelings, as well as recent events. I'll do my best to keep this as updated as possible.

This specific blog is going to mostly be focused around my daughter. Her name is Madison Olivia, and she has special needs. I think that it's important for me to express the frustrations as well as the joys that come along with the experience. I know this will be something nice to look back on; all the small and big things that she has and will accomplish. This is going to be about our Maddy's journey.

The day I found out I was pregnant, I just knew it was a girl. I immediately started dreaming of all the pretty, frilly things I could dress her in. It wasn't long before the complications started coming, and I worried that I would lose her. I started bleeding from about 6-9 weeks. I had a subchorionic hemorrhage, which is when a hematoma forms between the placenta and uterine wall. It can cause the placenta to strip away from the uterus and in return, cause a miscarriage. Every day that passed I prayed that there was still a little heart fluttering away in my belly. She held on, and eventually the bleeding stopped and the subchorionic hemorrhage healed itself. At around 16 weeks, I got a phone call from my OB-GYN stating that the QUAD screening came back positive for a neural tube defect. Lots of prayers and crying happened until I went to a high risk center for a level 2 ultrasound. After determining that she did not have a neural tube defect, they scheduled me for one more ultrasound to be safe. It was at that second ultrasound that they saw she had a two vessel cord. They feared that she wouldn't continue to receive nutrients like she should, so from that point on I was scheduled to go to high risk monthly. Then came my 27 week appointment, and the ultrasound showed that her placenta started aging early.

It seemed like one thing after another kept happening during the whole span of my pregnancy. Filled with constant worry, and struggles with staying strong. I was so worried for my child. I was scared she'd have to be delivered too early and never have a chance to fight outside of me. I just wanted my little girl to have a chance at making it; to keep fighting until she could reach full-term. I worried for nothing, because she made it. At one point, at around 33 weeks, she even stopped gaining weight, but shocked the doctors when in a span of two weeks she put on a full pound. She was born on July 13th at 39 weeks and 1 day by a scheduled c-section; weighing in at 7 pounds and 4 ounces. Her mommy and daddy fell deep in love.

I had a full day with my beautiful daughter, sharing her with family and friends, before the news came that they suspected a chromosome anomaly. Soon after that, they tested her hearing and told me that she wasn't hearing as well as they had hoped. I didn't know how to take that. I cried for 2 weeks straight because I had no idea what the future held for my little perfect baby. I couldn't imagine her having to struggle more than she already had. I wanted nothing more than for her to have a happy, healthy life and that dream was threatened with all the unknowns of this news they were giving me. A month later, the blood test came back. She was diagnosed with distal 18q-. 22.3-23 had been deleted from the longarm of one of her 18th chromosomes.

This condition can cause a number of things: low muscle tone, developmental delays, mental retardation, growth restrictions, heart problems, hearing loss, eyesight problems, etc. That's an overwhelming thing to hear about your newborn child, especially when not many tests had been done to rule out any life threatening problems. Her pediatrician didn't know much about it because of how rare it is, so we got referred to a genetic counselor. I dreaded this appointment. At that point in time, I just wanted to move on. I got the diagnoses, and as far as I was concerned it meant nothing. I still had my perfect little girl and I loved her regardless. She had been a fighter from the beginning, and I knew she'd continue to fight. The last thing I wanted was to confront the problem all over again by hearing all the things that could be wrong. I've got to tell you... I'm so happy I went to that appointment. I came in, and immediately the genetic counselor put us at ease. She assured us that we will have all the help we need, and the only time they will intervene is when it is necessary. She said that right now we have a beautiful little girl, and we need to just enjoy our baby. What a relief it is to hear that; to know that we were now free to do what I wanted to do since the beginning... enjoy her. I was then thankful that we had a diagnoses, and if we needed any intervention, we'd have it.

She turns 3 months on October 13th, and so far she has done incredible. She has been smiling since almost the beginning. She giggles and babbles constantly. She's always giving mommy and daddy a piece of her mind. Her pediatrician didn't believe us when we told her she is trying to talk by making her babble noises. She said it was "too early", but then Madison started talking to her. She acted shocked. I guess she assumed I was imagining it? She's been flipping to her side for the past few weeks; she has even flipped onto her belly a few times! She's got great strength in her legs. She's a little wiggle worm and loves to attempt to climb when we're holding her. She does this cute thing where when we lay her on us belly to belly, we'll put our hands under her feet and she'll bounce up and down trying to get somewhere. If she doesn't like where I sit her (her bouncer seat, car seat, etc) she lifts her butt up in the air and grunts loudly out of dissatisfaction. She's so strong-willed. Her upper body strength isn't as good as her lower body, but we'll be making an appointment with an early intervention program soon and I'm assuming based on their determination we'll be seeing a physical therapist to get her caught up.

We've gone to a specialist about her heart, and it's perfect. She has no problems other than possibly her hearing and her sight. We have appointments for both of those this month. She reacts to even the quietest noises, so I know she's hearing--even the hearing test determined that, it was just a matter of how well. She has a little problem focusing her eyes, but she is seeing.

I know that there are going to be struggles that come along with this condition, but I'm keeping faith that the joys will well outweigh them. After all, I have my little girl. The girl I prayed would fight to be here. I know that regardless, she'll continue to fight. She was meant to be here. Thank you, God. Thank you for my little miracle.

My two little pumpkins.