by ericasteele | Jun 25, 2013 | Children, Choices, hospital
The past 5 days have been more emotional than I (Erica) expected.
We have been preparing for this surgery for the past 3 months or more and had felt peaceful about moving forward.
Kennady has gotten much tighter and just generally uncomfortable due to her high muscle tone.
The decision to have the surgery was not one we took lightly. We finally came to a point when we felt like her quality of life was diminishing and could be maintained, or improved, with the Baclofen pump.
During this time Robin and I have discussed the surgery and all of the possibilities between the two of us, with our family, and with close friends.
As we usually do, whether in the case of a major surgery, or major sickness, we prepare for the fact that Kennady may not survive. We all come to the end of our lives at one point or another, some slowly and gently, others tragically unexpected, and many others in between.
However, life with Kennady, always has that feeling a little closer to the surface for us.
During the time leading up to this surgery, I had mentally felt prepared for whatever might happen. I had peace about the decision to move forward with the procedure. We had met with the doctors and nurses about all of the aspects of surgery, how that this was very invasive and the risk was substantial.
It is hard to tell you how many thoughts come to mind while making these decisions. Decisions on life and death and the weighty things in life. Whether it is right or wrong to extend our lives at all.
These are not small things given to us. They are great, and taken as such.
Our greatest goal and drive is to honor God in all we do. With every decision, every word spoken, every breath breathed.
Often we fall short of that goal, reflecting on what we can do better in the future.
The weight of the surgery felt light on the whole to me. I felt very peaceful about it, and up until a couple of days before, I really had no major concerns.
I simply had faith that God was in control and giving me the peace that I needed.
Thursday morning during the surgery, Robin and I sat around and talked and laughed (a lot). We discussed lots of things, none really relating to Kennady and the surgery.
After the doctor had finished the surgery she came back to talk to us. As you know, from the blog Robin wrote, the doctor’s words stunned us a bit.
I was so emotional when the doctor said it was the “this was the most difficult catheter placement I have ever done”. I felt somehow that I wasn’t prepared for that, and that somehow that peace I had felt was not authentic because I was not feeling completely peaceful in that moment. As if some how, my lack of strength was a reflection of God not providing what I so completely believed he had.
You see, in my mind, the surgery was going to go off without a hitch, or be very heartbreaking. There wasn’t really a middle ground.
When I talked to people shortly after that, I could barely get the words out without being choked up with tears and emotion.
As the day went on and we talked with doctors, family and friends, God began to reveal the truth about that moment.
The picture I began to see was so beautiful.
God prepares our hearts, gives us peace, and is with us all along the way; but the peace we feel in those moments, is not that we will handle the situation with strength, a certain emotional calm, without fear or even with joy.
Those moments of peace come from a faith that God is in control, regardless of what I might be feeling in that moment.
We can’t be prepared for things we have never walked through. Each moment of this life is individual, no two moments alike.
I could never be completely prepared enough for the loss of my daughter, I can never be completely prepared for what the future holds.
The peace that I felt before crossing that bridge and many others, was a peace that, whatever may come, God will provide the strength I need for that moment and all the moments to come.
His grace is sufficient.
That’s it. His grace is more than enough for every moment I live.
I may not know what that moment will be like or what it holds, but he is enough.
2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness.”
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Robin showing me the outcome of who will be the greatest martyr for staying over night at the hospital. Here, I am gaining the lead for staying tonight.
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D-lish salad brought to us by Cristina Vazquez. You may not recognize us when we leave the hospital. We have eaten well.
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Today’s fashion pic
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Unexpected guests. They stopped by to pray for Kennady
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by pastorrobin | Jun 20, 2013 | hospital
This post is from July 2013. This surgery ultimately went wrong. We are having to do it over again. Sept 16, 2014. A New post will be on our blog Monday, Sept 15, 2014 with more info.
For the last several years, Kennady’s muscles have gotten really tight. So much so, that they are contracting her arms and legs completely and creating scoliosis in her back (curvature of the spine). This causes a lot of pain and difficulty in bathing, getting her in and out of her chair, and basically all movemnent. We have given her medicine (baclofen) in hopes of reducing this tightness. It has worked some but it has a lot of negative side effects with little success.
A few months ago we decided on a surgery that would insert a medicine pump in her abdomen, with a catheter into her spine, that will automatically put the medicine directly in contact with her nervous system and muscles. This will allow the medicine to skip the ‘blood brain barrier’ and not cause the side effects. It will also allow us to use lower doses with a greater reward.
Today’s surgery inserted the catheter and if it works successfully, they will insert the medicine pump on Tuesday. We have to stay in the hospital the whole time. It will take around 8 days for the complete recovery to happen and before we can go home.
We got to the hospital at 7:15am, we met with the surgeons, and then she went into surgery around 8:30am. We waited around the hospital until we were called back to meet with the surgeon (post op) around 2pm. It was a very long process because they had a difficult time getting the catheter in the spine. In fact the surgeon said, “This was the most difficult catheter placement I have ever done. We almost called off the procedure. We couldn’t get the needle in the spine, but God was on our side. I said a prayer and pushed one last time.” The final time was perfect and the process was completed.
As of 6pm, she still hasn’t woken (is that the right word?) up. The medicine is already working tremendously well. Her muscles are extremely soft! This is awesome. In fact, she laying in a way that looks so peaceful and relaxed. It was almost strange to see her body configured like a normal child. Actually, it’s beautiful.
We are so thankful to you all for the prayers and the outpouring of support. Mike Hollifield brought us lunch and Ruth Palacios brought us dinner. Randy Phillips came by and took me (Robin) out for a few minutes. Then, we received a huge gift basket from PromiseLand Central! WE ARE TAKEN CARE OF!
After Kennady went back to surgery, I ran to this taco shack off Airport Blvd. for some TACOS
Erica is beautiful!
Sticking tongue out at dad
heading back to surgery. this guy was a hunk.
Here is our suite!
occupational therapist taking measurements on Kennady’s new flexibility.
snoozin’!
Randy proud of his towing sticker
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by pastorrobin | Feb 1, 2013 | Choices, hospital
I (Robin) was asked by Texas Alliance for Life testify before a Texas Senate committee that is considering a bill that will close the door for ‘wrongful birth’ lawsuits. In other words, parents can sue doctors, nurses, hospitals (any medical person or place) because the parent wasn’t notified of their child’s disability and would have aborted if they would have known. They can sue because their child was ‘wrongfully born’. This is what I will read before them:
Erica and I were expecting our first child in September of 2001. We were completely excited about the potential. A home birth was planned. We had dreams of our child taking her first steps. Growing up with friends at church. Getting her driver’s license. Going to college. The list goes on and on.
After we crossed the 30th week of pregnancy, we visited the Austin Community College Nursing program for a routine sonogram. Our thoughts were simple. Let’s just make sure everything is ok. We were convinced that there would be no complications because Erica’s pregnancy had been trouble free. In fact, she didn’t even suffer from morning sickness, pains, or any other common attribute of pregnancy. The sonogram was taking a very long time, and they weren’t cluing us in on the fact that they were seeing something very abnormal. Almost an hour passed when the director of the program came in and told us that they would have to send us to a specialist because “they weren’t seeing something that they should”.
That afternoon we visited Perinatologist Dr. David Berry in Austin, TX for the official ruling. All our dreams and visions for our child came to a crashing halt when we sat in Dr. Berry’s office. His team had viewed our sonogram and confirmed the fears of the ACC team. Our daughter’s brain was almost non-existent. There was so much fluid in her head that the only portion of her brain was crushed against the skull. The prognosis was brutal. “Your daughter might not be born alive or live very long after birth. She could possibly be blind, deaf, and severely disabled. Most likely, there will be learning disabilities and mental retardation.”
We were given two options. The first option was to schedule a C-section at 38 weeks and go through with the original plan of life with all the associated negatives. The other option was to have a late term abortion. These were not legal in Texas, but we were given the option of traveling to Kansas or other states to end the life of our daughter before she was born.
It took us about 10 seconds to make that decision. We scheduled the C-Section.
She was born two days after Thanksgiving, November 24, 2001. After birth a MRI revealed that her condition was actually much worse than they originally thought. Instead of only hydrocephalus, she, also, had Alobar Holoprosencephaly. The brain surgeon told us she could be expected to live anywhere from 6 months to two years (if she was lucky). He gave us another choice. Surgery would ‘prolong’ the inevitable. Choosing to install a shunt in her brain would ease her pain and prolong life to two years, or we could choose not to install the shunt and let ‘nature takes it course in the next few months’.
It took us about 20 seconds to make this decision. The surgery happened the next morning.
While in the hospital, one doctor actually reported that our daughter would not have a ‘meaningful life’. After obtaining the medical reports in 2012, we actually saw those words in the official records. Our daughter “would not have a meaningful life”.
Kennady celebrated her 11 year birthday in November. She is the happiest fifth grader you have ever seen in a wheelchair. She speaks to us with a contagious smile.
Your heart will melt when you take her by the hand, and she starts giggling. She doesn’t know about the tension in the Middle East. She has never met a stranger and has no clue that people stare in the grocery store. You would have an extremely difficult time making a case for a “meaningless” life right now. She speaks volumes without words to all who will take the time to get to know her.
Suing a medical professional because your child was born with a disability is like suing CBS Sports because the 49ers just lost the Super Bowl….as if the network knew definitively who was going to win or not. If you had known your team was going to lose, you would not have watched the game. What does it say about your dedication to the team if you will drop everything at the sight of difficulty? If all odds are against the team and it looks as though they will lose, the team will still want to play and give it their best (regardless of what the TV network or the fair weather fans have to say about it). The game is really up to the team. The disability and chance for life is truly owned by the child. It is his or her right to have a chance at life to live or die naturally. Doctors are often wrong. Prognoses are often wrong. Who are we to usurp our authority into a situation where only God owns the rights?
One of the biggest oxymorons has to be a: “selfish parent”. Why do we ‘have kids’? Are they for our benefit? Are they so we can have a toy or someone who gives love to us? Are we satisfied because they are smart or because they score the winning goal? Are they beautiful because they fit the American/Hollywood standard?
As parents, we take ALL responsibility for that child until that child has reached the age of personal responsibility. If that child never reaches that age, then you, as the parent, must own that responsibility. That is part of living in the world in which we live. Things don’t go as planned. Hurdles, mountains, and deserts are to be crossed. When these challenges come our way, we don’t look to the nearest scapegoat in order to make ourselves feel better or skirt our responsibility. No, we do the right thing. We love our kids and raise them to be all they can be. We learn from them. We are changed into better people because we have allowed brokenness to be meaningful.
Read Erica’s Honest and Funny Response
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by ericasteele | Sep 20, 2012 | Children, hospital, Video
Although we don’t know the Brown’s personally, we know the Brown’s. We know the weight that they carry and the hope that they have.
Their sweet baby girl Pearl is changing the world.
Pearl and Kennady have the same diagnosis and the same fighting spirit. We have been honored to meet them through texting, tweeting, and phonecalls.
You can follow them on their journey here. Here is one of the Brown’s most recent interviews. via East Nashville Baby Gains International Recognition.
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by pastorrobin | May 29, 2012 | Children, Grandparents, hospital, How to deal with pain
It has been one week since Kennady went into the hospital and today she goes back to school! She was admitted into Dell Children’s hospital because of severe vomiting. The source of the nausea was low sodium levels. It took eliminating all food and drink to get her levels correct again. It was a drastic step. The doctors telling you that your child can not eat or drink anything for the next 36 hours is intense. Erica actually asked them, “Would you treat a normal child like this.” The answer was yes.
It only took a few more hours and she was doing better. We were sent home on Friday night.
During that time, life goes on. Our other two boys are doing their 6yr and 8yr old thing. I have to pastor a church. Erica balances life, school, mothering, being a wife. The rest of the world doesn’t stop. It takes the GRACE of GOD to maneuver through. We decide several things:
1. We need help. When people ask what they can do, we have learned to tell them. It is so difficult. Our natural response is to say “Thank you” and then not use their help. However, we have learned that people are blessed when they help and we need the help. It is a double blessing. Every time we go through a challenge at this level, we have a huge outpouring of prayers and people calling to support. We had people buying breakfast, visiting, helping with our kids, and more. Here is a clip that “Grana” took when she went to field day with Jude.
2. We need to connect. Before the storm comes we need to connect with people. We make the conscious decision and effort to connect to a local church body. I don’t know what we would do without our church family.
3. We need to focus on the need. We need to be there for our daughter. God has put us in her life to raise her, provide, and protect. We need to research the conditions. We need to TAKE INITIATIVE with the doctors and nurses.
4. We need to keep moving. We must have balance and continue to walk through the rest of our life with as much normalcy as possible. One day, I took the boys to my parents house and we worked on a new playhouse. Or should I say play mansion??
All of the movement is a dance with life. We take a step and then life takes a step. We move and then conditions change. The only way we are able to smoothly move is through the Grace of God. His power enables us. He has endued us with the ability to move through challenges and valleys.
Thank you, Jesus.
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by pastorrobin | May 23, 2012 | Children, hospital
As of late Wednesday night Kennady’s sodium level was at 128. That is up from 125. The doctors are trying something (that we think is) drastic.
They are not feeding her or giving her anything to drink for up to 36 hours. They are giving her no medication or an IV. This is a strong effort to get her levels up to 140. We are not sure what they will do if this doesn’t work.
It is really complicated. We believe that God will work it all out.
One of the most difficult decisions we had to make was whether I (robin) would go on a scheduled trip to Atlanta on Wed-Thurs. Erica and I talked a great deal about the trip and Kennady’s condition. We finally made the decision that I should continue the trip. I return Thurs evening. We have such a fantastic group of friends and family that really nothing skips a beat. Our boys are well taken care of. Our PromiseGroup met without us. The church staff continued to make progress (I think). I haven’t checked on them in a while. Ha!
Erica and I have gotten to a healthy decision making process. We weigh all the factors and make a decision where we are both in agreement. I have found that these road bumps actually bring us closer together. We respect one another and love on each other. We see the body of Christ rise to the occasion and we feel really loved.
We are hoping that the sodium levels increase very soon and we can bring Kennady home on Thursday. This is still an option at this point.
Thank you for your prayers and support.
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