Posted Jan 31, 2011 4:29am
by Melinda
Dearest Family and Friends: I have been writing down notes the past weeks and finally decided to group them all together in this long post, so I hope they make some sense. I am too tired to go back and try to re-write anything right now.
Cold Virus: Sara ended up not having RSV but instead has a similar virus called Adeno. The nurses continue to suction her mucous out on a regular basis. She has also had a fever off and on all week. The doctors are not certain if the fever is related to the cold or if it is due to her brain not being able to regulate her body temperature. Her condition continues to be stable.
The coma: As a Heart Mom, I have been reminded each time Sara has a surgery that she will be at risk to brain injury. Nevertheless, I never imagined my beautiful little red-headed princess would be lying in the hospital in a coma. I was as well prepared as I could be for heart complications, surgeries; you name it, but never for this. Yet here she lies on the bed next to me, doing little else but breathing. Oh how I have longed for Sara’s little hand to squeeze mine, to hear her little voice say “Mommy” or to see her look into my eyes as I tell her how much I love her!
When my sister, Kristin, was here visiting Sara, she commented on how Sara’s hospital room was a sacred place and I believe that is true. I feel the love of our Heavenly Father here with Sara. I also feel my Mom, her Grandma Kaye, close by right now. In fact, I’ve always felt like she has watched over Sara. Perhaps she is able to be with little Sara right now during her state of unconsciousness. My dear Mom passed away during open heart surgery when I was seven months pregnant with Anna and Sara. We named Sara, Sara Kaye, after her. What a beautiful, faithful and valiant woman my Mother is. When I think about her example, it gives me strength and courage, especially during difficult times.
A pattern of studying and learning, asking those with experience, and praying for guidance: During my twin pregnancy, we learned of Sara’s heart defects. Immediately, I began researching her defects and then sought out other Moms who’d given birth to babies with similar diagnosis to Sara. I toured three different hospitals, and interviewed the top surgeon at each of those hospitals. I also joined support groups for parents of children with congenital heart defects and asked them why they liked or didn’t like their child’s doctor and surgeon. We prayed for guidance regarding all of medical decisions we had to make in Sara’s behalf. We also prayed that she would make it here safely with her sister and that she would live through the surgery we knew she would need shortly after birth.
When Sara had a stroke after her second heart surgery (Glenn) I quickly put in place occupational and physical therapy for Sara in our home, which she had almost daily. She continued with this therapy until her right-sided weakness was gone and we could not detect it any longer.
When Sara was finally 30 lbs and it was nearing time to have her last planned surgery, the Fontan, I searched for other Moms’ blogs and experiences so I could be prepared for possible complications. I started this carepage so I could keep family and friends informed about how she was doing and so we could feel their love and have a support system in place if we needed it.
Advocating for Sara and our test as her parents: Over the past weeks, Steve and I have felt like two college students who’ve been given this big assignment or test, except, of course, this is not a school project we’re working on, this is our daughter’s life. We’ve researched Sara’s condition; we’ve talked to doctor after doctor, often asking the same questions see if we get different responses. We’ve read medical journals as well as parents’ accounts of when their children did not wake up after cardiac arrest. We’ve prayed and prayed and then prayed some more.
Through all of this, we have been so grateful for the love and support of family and friends. I don't know what we would do without the help and support of my Dad and Susan and my brothers and sisters who have been there to help us with whatever we need. We also feel the support and guidance of a loving Heavenly Father who knows what is best for Sara and for our family. It is His will that we seek in the quiet moments.
I believe that I have been prepared for this trial, just like I was prepared for my Mom’s passing. I think trials will come in life, no matter what, and hopefully we are seeking the Lord's guidance in our lives so He can prepare us for them. I also believe in asking those around us for help in getting through our trials, because I don’t think we are meant to endure them alone.
Steve and I talk about how there must be something we are to learn from this experience with Sara. We have already been prompted to make certain changes in our lives for the better. We also feel closer as a family and our prayers are more sincere and heartfelt than they’ve ever been. I’m sure there are many more things to be learned as well. I also know many of you have expressed how hearing Sara’s story has touched your life in some way and made it better.
Through all of this, we also feel a deep sense of gratitude for the blessings we’ve received and continue to receive and for our relationships with God. I can’t imagine going through this not knowing that our family will all be together again someday. For that knowledge and promise I am the most grateful.
I teach a class of sweet, beautiful, twelve and thirteen year-old girls each Sunday at church. One of those sweet girls recently emailed me recordings of the thirty or so little children at church singing songs for Sara. Below is part of my email response to her:
I know that part of my preparation for this difficult time I am experiencing was being your Beehive teacher. I remember the last Sunday lesson I taught was entitled, “Coming to Know the Savior.” I expressed to you then and I can say it with even more conviction now that the Lord knows each one of us personally and that His sacrifice for us was personal. I know He's felt exactly each of our pains and sorrows and that is why He can succor us the best.
What a beautiful Primary song the children sang on this recording you sent me. I had to look it up, so I could read the words again. “I Know That My Savior Loves Me” is my new favorite song. Like the song says, “I did not touch Him or sit on His knee. Yet, Jesus is real to me. I know that He lives! I will follow faithfully. My heart I give to Him. I know that my Savior loves me.”
Seeking God’s Will and Feeling Peace: I absolutely know that God can heal Sara and make her whole again if that is His will for her. I also know that every path Steve and I have explored to understanding Sara’s current condition leads to her ending up doing little more than she is now.
The hardest thing I’ve ever done was to get on my knees and express to God in prayer that I’m willing to give Sara back to Him if her mission on earth is now complete. I pray for peace to know if that is God’s will.
Sincerely,
Melinda
Melinda
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