Tuesday, September 22, 2009

Roller Coaster Ride

Jerry and I feel like we have spent a long time on this roller coaster ride and just when we think it is going well, we get news like yesterday.  We both fell apart, but held on to each other.  Looking back on yesterday I realize how strong our relationship is and that no matter what happens, we will still have each other and our marriage will be strong.  That is something we worried about a lot because our marriage has never really been tested by anything other than children and money problems (what marriage hasn't been through that?)  We are both realizing that we need to cherish the time we have with Hope and pray every second we get that she will get better. 

We went back to the hospital last night and spent time with Hope.  It gave us a lot of clarity on our decision and we talked to the ICU doctor about getting in touch with the Cleveland Clinic and seeing if they would be willing to take over Hope's care and evaluate her to see if they would consider doing surgery.  We should know something today or tomorrow, so buckle up for the roller coaster ride!

We want to thank everyone again for all the prayers, thoughts, and support you have given over the last week.  I can't believe Hope is a week old already.  She is staying strong and even though her blood tests don't show it, she is peeing a lot...which seems like a good sign to me.


  1. Paula, I was sad to read about the latest on Hope. As a married couple, you're right, our marriage really gets tested, how solid it really is. It can even bring us even closer together, but it's a choice that we have to make, how we both, as a couple, deal with these very difficult situations that we are both experiencing.
    Like her name stands, Hope, I really hope that there will be new developments with the clinic, Hope still thrives, still gives signs that she's going to fight. In the meantime, don't waste any moment with your miracle baby whom God is blessing you and your family. She's one week old, and that's something to celebrate!! I'm praying for you more than ever.

  2. Sending so many prayers up right now. I don't know if this is an option for you, but we are also from the Akron area and my daughter had her first two surgeries at Rainbow. They recently went through some changes, so for her most recent surgery, she went to Mott Children's in Michigan with Dr. Bove. He is really amazing and well known in the cardio thoracic surgery field. He may be another place to turn for a second opinion. Please let me know if there's anything else I can do to help. ~Angie Montgomery

  3. I don't know you at all, found your story on babycenter.com. Last October we were in Akron Children's PICU with our daughter for heart surgery. I'm so sorry to hear about your story. I am praying for a miracle with her kidney function, I will keep praying and keep checking your blog. My heart breaks for you and your family, that is such a hard place to be with your precious child. I promise you I will pray. You are in good hands, we love Dr. Smith & Spector and all of the nurses in the PICU. God Bless you.
    I'm praying for you so much,

  4. What a beautiful name! May God be with you all now and in the coming days. Stay strong and feel the love from all who now know Hope and will be praying for her and her whole family. In prayer, Renee & Wayne Slaughter (Dave's Mom & Dad).

  5. We are praying for you, Hope, all the Docs, Nurses and everyone that will be evaluating her.

  6. Subject: Hope for Hope
    Dearest Paula and Jerry,
    Having learned things the hard way I fought even harder and learned to have greater hope when I learned my son was going to be born with HLHS. My husband and I demanded more opinions right away, and found hope and courage thru those opinions. It was good in a sense that you had professionals at Akron who had the dignity to admit that they didn't have the answers. I never got that respect when my daughter was dying and then died due to the Drs. lack of understanding. Find all the answers you can from everywhere you can. Ask to speak to Dr. Preminger at the Cleveland Clinic who is brilliant and so kind as well. She is a pediatric cardiologist who has taken care of my son a number of times. He is doing extremely well and we thank God every day that he had his care with the great people at the Clinic. Have you also contacted Dr. Edward Bove at Univ of Michigan's Mott children's Hospital? He is a world-renowned doctor in HLHS cases.

    I am going to pray every hour for Hope and think of her little body as being a fortress of strength and excellent prospect for a healthy life. I know you are going to give that strength to her too as the best mother and father she could ever hope for! And speaking of that, how are you holding up? Is there anything I can do for you? Would you like me to come visit?
    Keep up your faith and know we are all holding faith for you too. With great care and friendship, Solveig Elios, Avon Lake, OH (from the HLHS support group)