Tuesday, April 26, 2011

Sweet Grace

Yesterday Grace had her weekly visit to the Children's Hospital. It was not good news. I am so confused because what I heard today does not match what I heard last week. So here is our newest prognosis. The harness did not work and BOTH hips are popping out. She is in a Rhino Cruiser brace for the week and she will meet with the doctor next Tuesday. If by some miracle her hips start to improve she may stay in the brace. If not, she will need surgery.

In this case, surgery does not mean cutting. At least not at this point. She will have a procedure done by a surgeon where she is under anesthesia, dye will be injected in her hips, the hips will be positioned in her sockets and she will be placed in a cast. After six weeks in the cast she will be put under again and be placed in a new cast. She will wear the cast a total of twelve weeks.

The good news: We know what the path is now and can prepare ourselves mentally. Also, her brace this week does not cover as much of her skin and will give the sores caused by the other harness time to heal prior to casting.

The bad news: The possible side effects of anesthesia and twelve weeks in a cast during the summer. Thank God we do not live in the south right now. That heat would put us over the edge.

So where am I on all of this?

"I ain't complaining but I'm tired so I'm just saying what I think"

I am mad, sad and scared. I am mad that over the last four weeks the information I have received seems inconsistent. I am mad that this was found late. A nurse in the hospital thought there was an issue when she was born. The pediatrician disagreed. We would be finished with this all by now if the doctor had addressed the problem at birth.

I am sad that sweet Grace has to deal with this. I am sad that my precious little Jack has to take second place to Grace's medical needs. I am sad that it is harder to snuggle with my sweet girl. I am just sad.

I am scared to death. Grace is eleven pounds and that is just too small to be put to sleep. I am so scared she will have complications from the anesthesia. I am also scared about how I am going to care for her. I am scared about how I will keep her comfortable and clean. I am scared about how she will sleep and how I can be present for Jack when I am exhausted.

It is going to be a hard summer. I will say that I am humbled through this. There are other mothers dealing with much harder circumstances. My life is blessed and I have not forgotten the great privilege with which I live. But this is my baby and I want her healthy!

I am sure there is some lesson I am supposed to learn from all of this but right now I just want to fast forward to when it is over.

My prayer is sweet Grace will come out of this healthy and healed, and also that sweet grace will carry me and my family through the next few months.

Tuesday, April 19, 2011

Cautiously Optimistic

Today Grace had her weekly doctor's appointment. I went into the appointment cautiously optimistic. After last week my hopes were not high that the harness had started to work. Well, much to my surprise when Sue, our physicians assistant, evaluated Grace she felt Grace's left hip trying to stay in the socket more. Sue decided we would wait until next week to do a follow up ultrasound. At that point Grace will have been in her harness for four weeks. Surgery is not out of the picture, but it is also less eminent.

I sit here humbled by the power of prayer. All around this country people are praying for Grace and I feel those prayers working in her life. I also think some of you out there must be praying for me because I have much more peace about our situation.

I have spent some time thinking about why this hit me so hard emotionally last week. Why did this bring me to my knees? I am still not certain of the answer but have an idea. I was only prepared to have Grace in her harness. I thought our biggest struggle would be how to dress her and keep poop off the darn thing. I just hadn't even imagined we could be looking at a surgery. It really knocked the wind out of me when that became a possibility.

I do feel so blessed. My children are healthy. Hip dysplasia is manageable and we have the resources to ensure Grace will receive the best possible care. Also, I have enormous gratitude for the amazing family and friends who have told us just to ask if we need anything. We have a very blessed life and I do not want to lose sight of that.

Next week's doctor's visit will be stressful. Grace will have an ultrasound and we will know more about what we are dealing with. If the ultrasound shows good results we will continue with the harness. If not, we will try a different type of brace to see if we can get better results. Please pray that the harness will continue to work. Pray specifically that Grace's left hip improves over the next week.

I have a hopeful heart and remain cautiously optimistic.

Thursday, April 14, 2011

I Surrender All

Yesterday I found myself sobbing on my knees begging God to heal sweet Grace.

At Monday's doctor visit we were told Grace would have two more weeks in the harness and if things didn't start to look better she would need closed reduction surgery and be placed in a spica cast. Then yesterday I started reading www.hip-baby.org and became extremely discouraged. It hit me hard that this sweet, tiny baby -my sweet, tiny baby - has a long road ahead of her. I felt so helpless. I am her mother. She trusts me. I do not have the power to control her healing and it breaks my heart.

So there I am on my knees, crying, trying to pray, feeling helpless and I remember hearing Oprah say on a show I watched a few days ago on her new OWN channel, that when you find yourself lost with no good options it is time to surrender. I am not good at giving up control and most of my biggest struggles come from trying to control other people and various situations. Some may even say I can be manipulative. The gist is that I want to feel like I have the power to make things turn out like I think they should. Well, life doesn't really work that way.

But in that moment, tear stained face with snot running everywhere, I decided surrender was my only real option. I can make sure this sweet child has the best possible care but I cannot control whether that care works. So I turned it over to God. I surrendered.

Today I took Grace back to The Children's Hospital because yesterday her foot kept slipping out of her harness. We met with a different person and he explained Grace's condition in a way that made me more hopeful. He walked me through the different levels of hip dysplasia and said that with the condition of her left hip he wouldn't be surprised if it took up to five weeks to see improvement with the harness. Somehow my surrendering allowed me to see Grace's prognosis in a different light. I now have hope that we can correct this without multiple surgeries. There is still time for the harness to do its job.

I believe in the power of prayer. That is why I constantly ask for prayer. My life is a testimony of prayer's power. So now I pray in a state of surrender and wait.

Wednesday, April 13, 2011

Why blog?

To blog or not to blog, that is the question. Lately, I have a lot to process. Motherhood. Faith. Sacrifice. Love. I think a blog may be a good place to share this crazy journey with family and friends. I warn you though that I have strong and abundant opinions and if you are easily offended, this may not be the blog for you. Right now on my journey I am in a crisis of faith, a struggle with my child's health, raising a two-year-old and a two-month-old, and trying to find a happy heart through it all.
I plan to use this as a forum to keep updates on the little ones but also offer my thoughts on whatever else is on my mind. By the way I stink at technology so bare with me as I make this blog pretty.