Saturday, December 12, 2015

We just love the hospital

This is more of an update for family and friends and I will try to keep updating as needed.  

First off it was decided in September by Brandon and myself that we would take Lizy to a urologist.  She had already had two febrile UTIs in the past couple months with her fever up to 104.  The pain she would go through was unbearable to watch, I cannot imagine how she was actually feeling. These were not the first two, however every time a UTI would present itself it would be worse than the last. With my history of kidney and bladder issues at the same age we at least wanted her checked out.

After her tests were ran it was discovered she does in fact have bilateral renal reflux(VUR). With a few different options we chose the surgical route for Lizy. This past Monday she had bilateral ureteral reimplantation as well as a cystoscopy. Her urologist wasn't happy with the flow so he put a stent in each ureter which is now causing her so much pain. It has been so hard watching Lizy recover but I do believe we made the correct decision especially since the stents were needed. She has an incision similar to a cesarean and is having a hard time with that as well. It is difficult for an adult to lay around and recover let alone a 6 year old little girl.

The same day we were told Lizy was going to need surgery we were also told Logan could be scheduled for his baclofen pump placement. He had a surgery scheduled this past June however in May he had Pancreatitis and lost too much weight. I had been against this procedure since Logan was three years old and we were told it was a great option for him and his tone.

We have tried Botox which stopped working after three treatments. When it did work the high tone in Logans body, mainly his legs and hands, gave him the ability to move a bit more freely. The past year the tone in his legs has become increasingly high. If you are not around Logan often is difficult to change his diapers, his legs are always scissoring which is abnormal for him. Logan has hip dysplasia as well so before that is corrected, via yet another surgery, his tone needs to be under control. His left hip is completely out and his right hip is working its way there. He has grown so much the past year which is a contributing factor in all of these changes with tone and his hips. The good thing is his hips do not seem to bother him at all.

Logan is going in this Monday, December 14th for his Baclofen pump placement. His neurologist is at Scottish Rite and is amazing however we are closer to Cooks now in Fort Worth and will be using a neurologist there for the surgery.  When we met him he took me through some photos of the procedure step by step of a study he recently did to ease my mind. I have faith in him and have heard great things about this neurologist. The pump itself is 3.4 inches in diameter and there will also be a catheter inserted into the spinal fluid. I am absolutely positively terrified of this procedure. No matter how many people tell me it is going to be amazing for him and it will be safe I am scared, there are too many possible complications and side effects for my heart to be at ease.

We are so thankful for family flying down to help take care of the kids and family sending special packages to make the kids smile.

Thank you to our friends for meals and keeping our family fed, although I was very reluctant to accept I cannot tell you how helpful it has been to have a meal already prepared.

All prayers are appreciated for our babies.

Love ~ Amy-Jo

Thursday, March 26, 2015

Sometimes there are not so great days

Our children make me so happy, Brandon too, however this is not what I am talking about. I went on our blog back to 2008 today and turned into a blubbering mess reading both happy and sad moments.

Every day six years ago I would look at our beautiful precious babies and think about Cody.  I was and still am so angry, mad and frustrated about losing him and still not knowing why.  I would often wonder what it would have been like if there was that other boppy on the floor or another swing or crib in the nursery.  No matter what I did or how hard I tried, I could not get past these thoughts.  I struggled so much and hate that I felt this way.  I felt that I was taking something away from our children who were there in front of me that my body fought so hard to keep on this earth with us.

It took three years for me to stop being as angry and upset as I was the day we lost him. I truly never mourned losing Cody when he passed. I tried to stay as positive as possible and in good spirits to save our three other precious little ones.  Once they were here, I honestly did not have the time to mourn him as we were so busy trying to survive the first year and enjoy every moment, it has continued this way ever since. There have been triggers that would set me off all the time in the first few years and now the same things that used to send me into a crying fit make me smile and look up and think of our son. It seemed that every show we watched, every place we went, and everything I read on the internet had someone named Cody.  I am not sure if this was God trying to get me to mourn or letting me know he was always with me. I don’t know that I want to mourn him especially since I still think of him every day and say good night to him every night.

Today, as much as I think of Cody, I am able to enjoy our lives so much more and talk about him when asked.  I am still a mother to quadruplets, however when people ask in passing we say triplets.  If Elizabeth or Madison are with me they do sometimes say no we are quadruplets and then I will explain that our son is with God. Don’t get me wrong, I still have what I tell Brandon are bad moments or bad days and I am so thankful he is understanding and lets me have my time.

In a way I feel so lucky, yes this may sound weird, however I am lucky that I get to look at Logan and know what Cody would look like and will for the rest of his life. I am lucky that Elizabeth is so spiritual and has talked about Cody since she has been able to talk. She told me she had another brother before we ever talked about him with her.  The girls almost daily ask to hug and kiss Cody, this may seem weird and odd to some, however it works for us and the kids were and are connected to him.  Logan, I think, understands everything, he is a smart little cookie and we have had many conversations and he listens to Lizy talk about their other brother often.

My heart will never be healed from losing our son, but he is such a big part of our lives in a small way. Our children have helped their mother heal and grieve. They may never know how much their love and compassion for their brother they knew in the womb has meant to me and gotten me through so many difficult times.  I would be lost without Logan, Elizabeth, Madison and Brandon.  I need and want to say a huge THANK YOU from the bottom of my heart and the depth of my soul for healing me and loving me when I have been down and you may never have known why.  I hope and pray one day you read this and know what your love and kindness can do for others.

My love always ~ Your Mother and Wife