New Beginning

I was putting away my daughter's clothes the other day and thought-wow, had I known my daughter was going to have a PEG tube, I would've bought different clothes.
What should I have done? Not purchased anything ahead of time?
Purchased a lot of everything to be prepared for anything?
We don't know how life is going to unfold. 

100 people. That's how many people have been diagnosed with the syndrome my daughter has. There were more people in my elementary school than that. More people live in my condo association than that.

And yet our princess, Arianna Marie, was diagnosed with 2q37 Deletion Syndrome when she was 2 weeks old.

NICU. Syndrome. Features. Facial Paralysis. Genetics. FISH analysis. NG. Placement. Jaundice. Residuals. Billy Ruben. Physical Therapist. Occupational Therapist. Speech Therapist. Neonatal. Splints. ABR. Feeding pumps. Aspiration. Swallow Study. Apnea Monitor. 2q37 Deletion. Cochlear Implant. Sensioneural. Wilm's Tumor. PEG Tube. G Tube. High Muscle Tone. Low Muscle Tone. Clonus. Helmet. 

These are just some of the things my husband, Gonzalo, and I have learned about since Arianna was born. We never thought we would need to know how to operate a feeding pump. Or how to reinsert a NG Tube when she pulled hers out. Or how to check her lungs to see if she aspirated after attempting a bottle feed.

17 days. That's how long she was in the NICU for. The drive was horrible. But every time the hospital came into view, we would get excited! I can't explain the horror I felt leaving my baby everyday with these strangers. I guess at first I didn't question it. I walked in one morning at 8:40 and saw Arianna attached to the feeding pump. WHAT? Her feed wasn't supposed to start until 9! I wanted to try to bottle feed her! I called the nurse over and she told me that it was from her previous feed. Her 5 AM feed. EXCUSE ME? Why is she still attached? The formula should have been flushed through. Now that formula that has been sitting in the tube will be pushed through into her stomach. That was the changing point for me. That's when I really started to hate leaving her every night. It was never easy, but at first I thought I was leaving her with the professionals. She's in the best hands possible. The day I realized that was not true was one of the hardest days of my life.


Those first 2 weeks of my daughter's life, I shed so many tears. It was to the point I didn't even realize I was crying. I couldn't stand being alone. Those were my weakest moments. I would find myself bawling and thinking the worst possible things. Of course my mother would tell me I couldn't think about those things, but how could I not? You see your life a certain way, and within 24 hours of my daughter being born, I knew my life was not going to play out the way I had expected. Today, I am at terms with that. Last December, I didn't think there was anyway I would be able to come to terms with it.


I want to write this blog in hope to help others. Having a special needs child is a scary thing. Sometimes just knowing you're not alone is enough to get you through the day. I also want to write this to help me. So I must warn you. This is not always going to be sunshine and rainbows. This blog is a honest representation of what it's like to be a parent of a child with special needs who is willing to do anything for their child.

Comments

  1. UnknownDecember 7, 2015 at 5:45 PM

    You are an amazing person, both you and your husband. You could change people's perception of everything. I do not have a special needs child but know people who do and I hope they all read this blog. Love ya Heather. As long as you keep your head high you're angel will be staring down at you❤

    ReplyDelete
  2. UnknownDecember 7, 2015 at 5:46 PM

    You are an amazing person, both you and your husband. You could change people's perception of everything. I do not have a special needs child but know people who do and I hope they all read this blog. Love ya Heather. As long as you keep your head high you're angel will be staring down at you❤

    ReplyDelete

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