Tuesday, August 3, 2010

Heart mumbo jumbo and why I can't sleep.

Its nearly 12:30 am. I can't sleep. I am exhausted, but yet when my head hit the pillow about an hour and a half ago (right after the Bachlorette...my obsession!) my mind began to race. I wont go into all of it, but the short story is: Jim and I have gotten an attorney for Tara. She needs additional medical insurance, and we have tried every option. I consulted with a friend who has dealt with special needs kids for way longer then I have, and this is the route she needed to go as well. Its different. I can't say I fully understand everything, and every time I think of it, it makes me mad. We applied to get health insurance thru the ADA with medi-caid or medi-cal. We were turned down. Turns out that if you make over a certain amount of money every year, you can't have a child with disabilities. Well, as it turns out, you can. The state just chooses not to recognize you. Frustrating to say the least. So, needless to say, this is the only route we found. She needs continual health care. And with Jim being self employed, and us having to pay for our insurance monthly on our own, and with the insurance company able to increase your rates 8% every quarter at their will...Lets just say its not getting any cheaper. Our insurance company knows we have no other option...so we have been increased. The max amount every quarter. (hmm, maybe its not the short story of it all!)
So why has this gotten me flustered tonight...well, today Jim and I had a long chat with the attorney (again...the process started about 6 months ago). They have officially decided to take our case on, and today asked for detailed attempts of the first 72 hours before her birth, her birth, and the first 24 hours after she got sick. Its all the emotions on the grid. 72 hours before my water had broken, but nobody believed me. I went in several times before to Labor and Delivery. They kept telling me I was peeing my pants...they said it happens often with women who just "don't know" what it feels like to have their water break...HELLOOOOOO NOT MY FIRST BABY!!! I knew. After reviewing all of the hospital records, the attorneys office now knows too. They believe me. Not because they trust me, but because they saw the hospital records. My water did break prior to delivery. The delivery that when I got to the hospital, they disregarded. Sent me to the bathroom with my husband to pee in a cup. I was in pain. Transitional labor. FYI it hurts. Just a few hours before I was sent home saying my water had not broken, my contractions were braxton hicks, and that I still had 3 weeks before my delivery would happen, they told me I was not dilated at all. The day before in the doctors office I was at 4 cm dilated. I didn't know you could re-gress with that kind of stuff? As it turns out you can't. But yet they sent me home. But with the kind words of "oh, honey you will know when you are really in labor". Yet just a few hours later I was again in that same hospital delivering my daughter in the quiet bathroom with my husband catching my daughter over the toilet. My precious daughter. My 4th child. My 2nd girl. The baby we would call Tara. Tara was born with a perfect heart. Whole and complete in every way. My husband after catching her looking up at me with fear in his eyes saying "honey, I know it hurts, but I am going to need to to pull that help cord behind you so we can get some help in here". The next part was such a blur. My husband took complete and total control over the situation. When the nurse finally arrived she was flustered. She only had 1 hemostat. After talking to herself for quite awhile, my husband finally took charge yet again and said "clamp the baby" She looked at him stunned, then figured out she was the L&D charge nurse and decided she should oh I don't know...do something. She told me to hold my cord. When my husband walked me out of the bathroom several minutes later as we walked by the nurse me still holding the cord her words still ring in my head. "Now make sure you hold your cord up or you will bleed to death". Geez...thanks lady.
then fast forward a week. To the day I will never get out of my mind. The day when my life was forever changed. To September 14th, 2007. The day I was told to say goodbye to my daughter. The day when my worst fears were coming up. When in my dark moments I wondered if they even made caskets that small to fit a newborn. How to have a funeral for a newborn. Who comes. Not all of our friends had met her yet. Her Grandma had not even met her yet, she had not gotten to smell her beautiful newborn smell, to see her piercing blue eyes, or the chubs around her neck. To kiss to most wonderful cheeks you had ever seen. How do you plan a funeral for the most beautiful girl who the world, or all of your family and friends had not gotten a chance to know. How do you tell her adoring brothers and proud sister that she would not come home again? We didn't have to. God stepped in. He told me that very day. It was clear as anything I have ever heard. "She will live". It was not an easy road. Its still isn't an easy road. We walk thru it everyday. Everyday when I give her medication in the morning and at night, I am reminded. When I hook her up to her monitor when I kiss her goodnight and tuck her in. When I tell her how special she is. When I tell her that God is the strength of her heart. (Psalm 73:26 the verse I hung to for over 3 months in the PICU). When I go and give her (and her brothers and sister too) one last kiss before I go to bed, and sit back and adore she sweet cheeks, her chub neck, and her pale/blue skin. When I am in bed asleep, and her monitor goes off letting me know something is wrong with her heart, and I race down the hall half asleep, but getting more awake with every beep I hear not knowing what is happening. Adrenaline kicks in. Its hard to go back to sleep after that much adrenaline has gone thru your system. Yet on a regular, if not daily basis, its my new normal.
You see, this is what gets brought up even more on the days when I am asked to re-live that day. All the moments I can barely remember, yet will never forget. Tonight I write. Not write for you, but for me. To capture some of these moments and feelings. Feelings again that I will never forget. For this, I am bitter sweet. Because, when I re-visit these feelings of despair, anguish, and fear, I can sit back and remember how big my God is, and how he loves me so. For tonight when I tucked my miracle into bed and I told her that God was the strength of her heart, and her portion forever. She said it with me. "Gobs my hawt, an my porpin foweber". Yes baby He is. He is mine as well baby, He is mine as well.


  1. Kat,
    This is so beautiful. It is obvious that this is pouring from your heart.
    Where do I begin?
    I am a Bachelorette addict too. We watched it last night, Justin huffing and puffing through the whole episode because I was "forcing" him to watch it.
    We are going to re-apply for Medi-cal for Moriah because Justin got a new job that pays more than the last, and we are also scared that the state will not cover her -despite us saving them money by taking her home from a hospital.
    And lastly, all the fears, memories, adrenaline rushes, and so on...I just feel you, sister. Even though i know and understand what you are going through, and it's nice to not feel alone, it's even better knowing that God is the strength of our hearts.
    I love you sweet friend.

  2. and tears... love you! It's just all so amazing!

  3. A beautiful post that left me absolutely breathless... Thank you for sharing.

    Your story, Tara's birth story, is unfathomable... I am glad you have an attorney... what happened is negligence defined.