Thursday, April 10, 2014

I had hope despite the despair

I will never forget the day when they brought Lydia out of her first surgery.  I was a hormonal mess because I had just given birth to her two days prior to that, I was unable to hold her much, there was always a social worker or a genetics or someone wanting to talk with us.  There was no time to just be a new family of five.  But I will never forget seeing the picture of her anatomy and processing what that gap meant.  They briefly discussed this with us but said that it was so rare they did not think she would have this.  But, right there staring me right in the eyes seemed to be my worse nightmare.  They did not have to say anything to me, I knew.  But I was filled with hope that her esophagus would grow, that it would lengthen and she could obtain a primary repair.  I had hope despite all of the despair.

We would spend the next two months researching procedures, talking with specialists, praying, talking with nurses, talking with family, talking with friends.  We would reach out to people across the country and learn as much as we could about Esophageal Atresia, what that meant for Lydia, and what would be the best "cure" for her.  As our surgeon talked with us, he said unfortunately your daughter was born with a defect where there is no good cure.  Everything you do will come with it's own set of complications and risks.  We can attempt to give her the best shot at life, but know that you will always have some kind of issue.  I was ready to take on this battle and I was ready to fight.  I had hope despite all of the despair.

We would get opinion after opinion.  We were invited into medical conferences discussing Esophageal Atresia.  We would hear the professionals discuss the different repairs, the risks and the benefits.  We would pray and beg for the growth that we needed so we did not have to make this daunting decision.  We felt like we were becoming the experts in such an unknown and unwanted field.  This was all so foreign to us but was not becoming our new reality.  We knew that our hope was not in the repair, in the surgeon, in the growth, but God would help us no matter what we chose.  We had hope despite all of the despair.

Our surgeons were recommending the Gastric Transposition.  We went to research it and there was nothing good about it.  It was so scary.  I would have nightmares about what this would mean for our daughter.  I would cry out and beg for anything but this.  The information on this particular surgery was frightening to say the least.  She would be malnourished, she would not have a good quality of life, she would have such sever reflux, she would never grow properly.  The list went on and on.  The fear rose, but God continued to calm our heart.  We pushed through the information and we tried to process it.  There just were not many options.  It was beginning to seem so hopeless, how could I make this kind of decision for my daughter?  The hope was beginning to look so small, but we continued to have hope despite all of the despair.

We talked to surgeons who were known for "fixing" bad repairs, for a method that could only be done over there.  We had so many questions and so much fear.  We sent over our daughter's file, prayed and hoped they would say they had a cure.  Instead we heard horrible things about kids with the Gastric Transposition repair.  We asked if his method would be right for our daughter, what kind of hope could he offer.  We heard death and we knew we could not risk her life.  Because of all of the other things Lydia had going on, this surgery was too risky and they feared that she would not make it through it.  So, we crossed off that and our fear grew by leaps and bounds.  We were terrified at the decisions that needed to be made.  Couldn't anyone, someone, just offer some hope?  The hope of finding some kind of cure grew smaller and scary by the moment.  We were trying to have hope despite the despair.

More opinions and more outlooks that were not looking so good.  As our surgery team came in and spent hours upon hours talking with us, proving themselves as they took such great care of Lydia; the choice became clear.  It was not what we wanted, it was not the kind of decision that you make for your child.  How could I make a decision to give her a life full of horrible things.  No one offered any kind of hope, no one said it would be OK.  The negative took over and the fear paralyzed me.  My hope had almost completely left, but I knew God was still holding me; He was asking me to trust, it would be OK.

October 2, 2011 was the big day.  She would be in surgery all day.  They expected 12 to 15 hours of surgery.  How can this be?  My tiny baby, I would miss her, I would not be able to hold her, what would the future hold?  As she was taken back to surgery by her surgeon, he held her so close, he looked at me in the eye and said, "I am holding her, I have her and I will take good care of her."  Word that I found hope in during the long hours of surgery.  There was hope, there was a promise that things would be OK.  I had hope despite the despair.

Her recovery was anything but easy.  She had a leak, she had a lot of nasty stuff in her lungs, she was having trouble breathing, and it was just that up and down cycle of a roller coaster.  As hard as it was, we saw our girl fight, we saw her do things doctors did not think were possible and we saw hope.  Every day was difficult and hard, but every day brought a new hope, brought another smile and we knew that God was holding her close.  It is not something that I would ever want to go through again, but it has changed our lives and hers too and it is not bad.

Fast forward two years ahead and things are wonderful.  OK, not every day is great, but it is nothing like what we read about.  It is nothing like what we were told, not even close.  There are battles and there are struggles, ones that I wish that we would not have to face, but every day is a miracle, every day she proves to us just how strong she is.  I have hope now that just pours out for God has showed me just how faithful He is.  Yes, it was a decision that I did not want to make, but we did our research, we asked our questions and it is a decision we never have to look back on.  For us, for our situation and our baby, the Gastric Transposition was our lifesaver.  We had the most amazing surgery team and she is thriving because they shared their gift they were given and God had His Hand in all of it.

I wanted to write this to give hope to those of you who are battling making a decision about your child.  I wanted to give hope to those who have to make this decision.  I understand that there is no good "fix" for this defect, but there is hope.  There are "fixes" that will give your child a great quality of life.

So here are the details of our day to day struggles with Lydia.  She does experience some reflux, but I would say very little compared to what we were preparing for.  She will go months without refluxing.  She does have problems handling her secretions and we find that she will reflux more during these times.  She is a very healthy little girl.  She does seem to get "sicker" when she does get sick, but she always bounces back very well.  We do have to take precautions, watch what she eats, she sleeps in a Comfy Lift Bed to keep her in a safe position.  She runs and plays with her sisters and has more energy than both of them combined.  She is small for her age, but my other girls were too.  She also has Down syndrome and she has Congenital Heart Disease.  But she is not malnourished by any means, she is very healthy.  She does have issues eating, but a lot of that is from her journey that she had to take because of all of her diagnosis.  She is getting it though.  She likes to drink, she loves toast, and she is really up to try anything...usually just a bite though.  She likes chicken and French fries and cookies and ice cream.  Feeding is difficult and has required a lot of time, but I can't say that is just because she had a Gastric Transposition.

Lydia has had no dilation and no strictures.  She has gone in a couple of times for Esophograms to make sure that "mechanically" everything is working well and it has.  She has no motility issues.  She has little reflux (she is on Lanzoperzole twice a day).  Lydia has had no issues on choking on food or getting food caught.  She does not aspirate either.  While she can't handle her secretions very well and we can't throw her up in the air or shake her too much; she does wonderfully.  She is just as active as her older sisters (if not more) and she is a bundle of joy.

I write this because I would have found it very comforting to have someone tell me something good about this surgery.  I would have appreciated someone giving me hope.  We all have to make our decisions based on our child, the diagnosis, and our situation.  There is not really a good "fix" as I said before, so it is what is best for you and your family.  For us, there was no other option, we don't regret the GT and we are very blessed with the life Lydia has.  I think that it is important as we become experts in our children, their diagnosis, and medicines and therapies that we remember, there is not one formula that works for all children.  Make sure to offer advice but not say this is the absolute wrong or right thing (sorry my little soapbox.  It bothers me that there is SO much negative stuff surrounding this surgery and they are not all like that.)  There are many stories of hope and survival, excellent quality of life and those are what need to be shared.

I had hope that no matter what happened God would watch over His child.  He has done just that.  There are things that I wish Lydia did not have to endure, but that is her life and we make the best of it.  She will always be tied to a hospital and that is not just because of her GT, but her heart too.  I praise God that He brought her as far as He has and I hope that this has provided hope to you.  I hope that I was able to open eyes too that this surgery, while huge and very intimidating, is not always like what the "information" out there says that it is.  There is hope, even in the despair.

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