June 21, 2009

Flashbacks and Police Encounters

So if you've been reading this blog, you would have noticed that all my writings have been done in retrospect, events of last year as I remember living them. I've been trying to catch up to the present but it's taking me a while. There have been times I have wanted to share things on here thoughts and moments of today but I haven't because I would lose the flow of the story. But today, I just have to write this.

I had to go to Costco today, to help my little sister get in so she could purchase a dessert she had to take somewhere. I helped her do her thing, she was on her way and I went back to shopping for the things I needed. As I walked around looking for the Sushi rolls I saw a women accompanied by some young girls with them a young adult/teenage girl in a wheel chair. She looked healthy but as I got closer however, I became fixated on her arm/upper chest area as if it was sending me some kind of hidden signal. She was wearing either a strapless shirt or tank because I could clearly see she had a Broviac line. I quickly glanced at the middle of her chest to see if I saw an incision scar but noticed none. As I passed by her I noticed instead she was wearing a cute short wig. It then became clear to me she was a cancer patient. I'm sure she is use to people starring at her but I hoped inside me she knew I understood her somewhat and that although she was not my daughter nor friend, she was beautiful and I admired her strength. I wished I could of have asked her too what it feels like to have a Broviac Line, as her and Alexa shared that in common. Seeing her line instantly flashed me back to the NICU/PICU as my baby girl had the exact same thing on her arm/chest. As I write this I'm thinking wow, are these flashbacks part of Post Traumatic Stress Disorder or something. Anyway, here is a pic I found of my baby girl with that central catheter line.

This is not the best picture but you can see what it looks like. It is invasive and requires surgery for placement and is usually done under sedation or a general anesthetic by a radiologist or surgeon.

As I drove back from Costco, I thought about Alexa, about how much she has been through. I thought about how uncomfortable it was for me to have a dumb tiny little splinter in my finger and how I just wanted it out and about the many children who suffer on a daily basis with serious illness. I love Alexa. I love her more than my life. I thought as I drove that seeing your baby/child face Open Heart Surgery is really like one of the hardest things you can face as a parent. And although Alexa is such a dream, a wonderful, little charmer of a baby, the experience with CHD has been like a nightmare you just wish you could wake up from. Yes, I've learned along the way, and maybe even become a better person because of it, but I wish it was not at the physical expense of my daughters health.

I guess I was so entranced with my thoughts that I had no idea I had a cop flashing his lights behind me. I had been driving on automatic pilot, going through the motions while my mind was completely somewhere else. As the cop describe it to me, "I just rolled through a Stop sign". He asked me if I knew why he stopped me, and really I didn't. I remember making a stop, maybe lightly.

When the cop pulled me over, I really felt like crying. Between my flashbacks to the NICU and then thinking about Alexa's upcoming surgery and then the possibility of a ticket made me want to cry. Thankfully, he decided to give me a break. Thank goodness! We could all use a break sometime, especially innocent children like the girl at Costco and my little sweet heart. Please continue to keep these children and their families in your thoughts and prayers.

June 12, 2009

Heart Surgery

After a few days it was obvious Alexa's O2 levels were not adequate, as they kept dipping below 75. Alexa was scheduled for surgery, a surgery called the Blalock-Taussig shunt. This surgery basically would allow her unoxygenated blood direct access to her lungs via this shunt. This surgery however, would be temporary to prepare her for her big surgery the Rastelli. I remember feeling very anxious about it but also ready to proceed with it. I felt like she had just been in limbo for so long. And finally on her 13th day of life she had the heart surgery. It was a LLLLLLLLLLLLLOOOOOOOOOOOOOOOOOOOONNNNNNNNNNNNNNNNNNNNGGGGGGGGGGGGGGGGGGGGGGGG day. She was suppose to have the surgery early in the morning but she got bumped for a more urgent surgery was needed. I was told my the nurses this was a good thing, you never want to be in the position of needing an urgent surgery. I was happy it at least left us a little more time to carry and enjoy her before they took her away about noon. She got out of surgery about 6 or 7 p.m. it took longer than they expected. And her blood pressure was low. I was sad to know her little chest would never be with out a scar again. And that they would be breaking her sternum and prying her tiny beautiful little chest open. I know it's graphic. But this is the truth about CHD. These babies these families, we must face! I couldn't fathom it. But I knew she needed it. With out it she didn't have a chance to come home and home is where I wanted her. I kept telling her over and over, "baby girl you will be coming home where you belong". So the time came, and I had to let her go, we let her go wheeled in her little NICU bed to the operating table. And all we did was pray, cry, and hold our breath, I also vaguely remember my mom making me and my husband eat some food, but really it just felt like a chore. And you know what I really remember about the day/night before, I was thinking I hope the surgeon is going to bed early so he has is rest for tomorrow, I hope he ate breakfast so he nourished his brain and body. The surgeon and medical team were also very much in my prayers. How could they not, when they hold your child's life in their hands? On that day we also said goodbye to our NICU nurses and space as we were now getting switched to a private room in the PICU.

The surgeon came to tell us everything had turned out well and she was doing well. He said the first 24-48 hours are critical. I was so happy to see my little baby. She was completely sedated of course, and she had soooo many more wires and tubes coming out of her than before. I was heart broken to see her like that but so relieved the surgery was behind us.

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