Today was such a hard day. We went to the hospital this morning with high hopes that today was the day that Hope was going to see! We were sooo excited! We got there at 5:30am, and went to admitting, then to the exam room, then to surgery prep. She had to drink a medicine to make her sleepy, but it took a LONG time for it to go into effect. All the other kids who drank it about the same time, were laying in their beds, nodding off, but not Hope! She was jumping up and down in the bed, practicing her drum beats on the mattress, and laughing and giggling. She looked like a drunken sailor. Finally, although she never got “sleepy” she was drunken enough to wheel into the anesthesia room without realizing that they were wheeling her away from me.
I spent the next few hours walking around the hospital, eating McDonald’s, and just waiting. All of the sudden I had a heavy feeling come over me like I knew the diagnosis wasn’t good. I kept trying to brush it off, but it didn’t go away. About 20 min later the nurse called me into the consult room to meet with the doctor. I was on the verge of tears because I was realizing that although my hopes had been SOOO high, I had to be prepared for the doctor to tell me what I didn’t want to hear.
He explained that Hope is one of the most unusual cases that he has ever seen. He said that she doesn’t have PVPH, what he originally thought she had. He said that it was clearly trauma, and that he strongly suspects that she has shaken baby syndrome. He showed me the pictures of her eyeballs, and her retinas were both almost completely detached. He wanted to do surgery to remove the scar tissue, so after a quick conversation, he went into surgery.
At that point, I just waited. It took about 3 hours of surgery, and then they called me into the room to talk to the Dr. again. He told me that her left eye was considerably worse than he thought, and that not only was her retina detached, but there was a hole in her retina. There was nothing he could do for her left eye. He said that surgery on the right eye went considerably well, and that he removed 90% of the scar tissue. Now it’s time for the retina to reattach itself. It will take about 3 months. He said that the best case scenario would be that she would only be able to see light and shadows. It was kind of discouraging. Then they took me in to see her. She had big patches taped to her eye, with a big gauze wrapped around her head, to keep her hands from taking off the patches. They had her arms in slings, to keep her from bending them and ripping off her patches. It was so sad to see her that way. They let me rock her, and I just kept telling her again and again that we love her, and that she is going to be ok.
Now we go back in the morning to get the patches removed. They said that she shouldn’t be in any pain from the surgery, and to just give her tylenol. I will post tomorrow once we get the patches taken off, and let you know if there is any other news.
I was really feeling discouraged, not even about her eyes, but mainly about the fact that she was treated so badly as a baby. It makes me sick to think of it. But the Lord came in the midst of the darkness, and spoke to my heart. He said, “My Love is More Powerful than Hate. My Love Conquers All.”
July 15th, 2008 at 8:39 pm
Dearest Guza,
You are so brave and wonderful. Hope is the luckiest little girl in the world. Guza is her mom. She is truly loved and people are praying for her on a daily basis. Remember, it’s not over until it’s over. We will not take NO for answer.
God Bless!!
I love you, Auntie Carol
July 16th, 2008 at 2:59 am
I am so sorry, Kim. I can only imagine how hard it was to hear the news when you had been so hopeful that Hope would be able to see. And hearing that it was most likely shaken baby syndrome must truly make a mama’s heart ache for her child. But God knew the perfect family for Hope, and she will never know loneliness, sadness or pain again without someone by her side!
Praying for you all 🙂
Love,
Stefanie
July 16th, 2008 at 5:12 am
I do not know how I found your blog but I am PRAYING for Hope your family! Hope is a beautiful little girl with a wonderful forever family to love and hold her.
Sending lots of prayer,
Diana
July 16th, 2008 at 6:11 am
Prayers going up. In times like these I remember the verse this man was born blind so that God’s works would be shown in him (my own paraphrase).
And still, Praise God! she should be able to see Light and Shadows! That is huge! (coming from someone whose child sees neither.) This is a moment of disappointment, but it should be a moment of praise too.
Take care,
Heather BT
July 16th, 2008 at 9:59 am
Hi Kim, it’s Kerri from the PHPV group on Yahoo. I am so, so sorry that that the outcome is not what you expected. I am hoping that the surgery will at least improve the vision that she has in her one eye. I can’t begin to imagine what Hope went through as a baby, but I am so happy that she has found your loving arms to guide her and comfort her from here on out. (((Hugs)))
Kerri
July 16th, 2008 at 12:48 pm
My sweet friends…we are still praying. God’s plans are without flaw and He has something so amazing in store for precious Hope. I cry at the thought of what she went through as a baby but praise our Lord that she is home with you guys…never to be hurt again! We love you and will continue to pray without ceasing!! Hugs, stacy
July 17th, 2008 at 12:45 am
Kim – Stacy led me to your blog while you were traveling to bring Hope home! I just read your blog and my heart is heavy for you. Please remember that God IS A GOD of miracles and that even though the docs say what they do, continue to stand in faith. I am so sorry that you had to hear such horrific news about Hope’s childhood – Hope is HERE and NOW she has a mommy and daddy and family that LOVE her so dearly – Your family is an inspiration!
July 17th, 2008 at 12:19 pm
Kim;
Praise God that the doctor was able to work on that one eye (which is better than what she had before, right?) Praise God that she will never be shaken again and will know the love God intended for her to know with you. Praise God that he is sending people to hold you all up in prayer and to support you as you come across disappointments such as the surgery outcome. Praise God that Hope lives in America, where new procedures are popping up all the time, to help those in need. Praise God that you are bonded to your newest daughter and that she has such a strong spirit, certainly God will use that for His glory.
We are still praying for you and believing God for His hand upon you.
hugs
Kimmie
mama to 6
one homemade and 5 adopted
http://overthemoonwithjoy.blogspot.com
July 17th, 2008 at 12:30 pm
Kim and Todd,
Rusty and I are praying for you guys. I’m so sorry the surgery didn’t go as planned. God see’s the whole picture, you only see but a small piece of what he has in store for your family. We pray that He brings you encouragement and that your joy is restored in the morning. Hope’s adoption is one of the most beautiful love stories I’ve ever read about. God has not finished yet, this only one chapter.
Much love from SC.
Leslie and Rusty