After a seemingly long period of no major episodes for Samuel.. we had one Friday. Stressful, yes.. but somehow amidst the flurry of the moment I found things oddly quiet and I was greatly impressed by how the nurse moved swiftly and without panic to do something about a situation that could have gotten beyond us quickly. I had just walked in from picking up Sofia from school and enjoying a special lunch out with Jason. We figured it may be the last one for a bit since I am due to deliver by c section this Tuesday. The nurse was feeding Sammy by mouth with small foods and I guess she had just tried to give him a goldfish cracker as well. We have been making progress with oral feeding..and even some water.. slowly and steadily.
He still has chokey moments periodically, but usually can work it out and clear the airway on his own. As you might realize where I am heading.. Sam choked on the goldfish. But I usually just tell him to clear and give him time and encouragement. If I hear any sounds I know some air must be getting through and he will do best to work it out on his own. Well this time I think it must have stressed him too much, triggoring his autonomic nervous system instability because within moments he looked like he was locked up in a rigored pose and starting to grey out. The flashes of red to blue coloring we first saw were gone and he was turning stone grey. The nurse yanked him out of the chair and his body went limp. She did the baby heimlich maneuver and I could not believe how much force was needed to pop out that one goldfish. It was hard to tell if he was breathing but color was still bad so she took off for the oxygen and ambu bag in his room. I was a bit unprepared this time as it had been quite a awhile since a symptomatic episode like this. I really don't think the choking aspect was what led him to deteriorate so fast. I think it was the stress.
Have you ever found yourself amidst complete chaos? Maybe a crowd of people each individually, hecticly moving in completely different directions, swept forward by invisible forces and creating noises of such conflicting origins that mix and churn in such a disturbing calamity that you can't quite take it all in? I guess I used to join the ranks and give in to that hurried, racing lifestyle. I think I am learning to stop and take it all in a bit before getting swept into the chaos of the moment. Which is why over the holidays I found myself trying to slow down and avoid the crazyness..
Recap of our Holidays..
It has always been a real challenge for me to stop and quiet my own thoughts.. to look around, to look back and at what lies ahead. To really measure and weigh out what I see around me. This said, I took a break from blogging over the holidays as I tried to take in all of the events of the last year, the current focus of our life including the anticipation of being 9 months pregnant and about to deliver our last child.. and then furthermore.. looking ahead to the promises on the horizon for 2012. My goal was to enjoy a quiet Christmas, full of thanks and joy at how far from where we were at that same time in late 2010. Somewhere between the music programs and excitement of Christmas morning as well as an unexpected trip to Atlanta for a medical procedure for Sammy, I think I accomplished my goal.
Last year's holidays were such a blur. With hospitalizations for Sammy before and after Thanksgiving, I had hoped we were going to give Sam a very special 1st Christmas in 2010. I still find it hard to remember that his first meeting with Santa had to be between the walls of the ICU. Then a few days before Christmas and after receiving his 9 month immunization shots, Sam fell pretty ill and by the weekend was in full respiratory distress, on oxygen and experiencing increasingly troubled GI pain. It was hard to focus on the joy of the season when feeling such sadness for his misery. Then the day after Christmas he awoke with seizures and increased issues and we opened our email to find the long awaited biopsy results from Atlanta sent to us on Christmas Eve, after 3 months of waiting. 76 pages argued for a diagnosis of Probable Mitochondrial Disease, Complex 1 and 3. Although no gene had been pinpointed, the malfunction in the electron transport chain in his cells where energy is made showed complex 1 and complex 3 deficiencies, showing that Samuel was experiencing problems creating energy (ATP) from the oxygen and food that passes through every cell in his body. This pointed to a degenerative, devastating neuromuscular disease that would be effecting many different organ systems and we had to swallow the news that this could and probably would steal our son's life. Not the Christmas gift anyone wants to unwrap.
That day Sammy ended up back in the hospital for several weeks and thus we began 2011 in a somewhat dark place grasping for some kind of hope with childlike faith that God had a bigger plan than we could yet see. Over the course of the year, God answered our faith with many unforseen gifts for Samuel, bringing incredible growth and better wellness. 2011 may have begun in a bad place, but we certainly ended the year in a completely opposite and brighter world. I don't know what particular change to attribute the promising improvements and wellness of the last 6 months of his life but all I can say is.. Thank you, God.
After several bad months in the first quarter of 2011, we had hit a particular low as Sam was beginning to lose weight instead of just not growing bigger. From birth weight of 8 lbs.. Sammy was just over 14 at 1 year. By the grace of God we finally received full time nursing at home for him in late March, avoiding hospitals by having help during a bad illness and further avoiding taxing outings and illness exposure during well periods. His routine was strictly monitered and he was getting much more rest than the typical 1 year old. Our new pediatrician started him on what we later called.. the "magic" oil, a medium chain triglyciride (MCT) oil that immediately produced weight gain results and may have had some other metabolic impacts as it bypassed the liver and was directly absorbed without major digestive effort. Additionally we hit the 6 week mark of taking the mitochondrial cocktail of vitamin supplements and levocarnitine ordered by our Dr in Atlanta and of which we had been told would take that period of time before absorbtion would start showing results.
Beyond the 16 hours of intestinal formula feedings through his GJ tube, Sam began also getting hourly pedialyte to keep him far from any risk of dehydration. Apparently all of these factors combined with avoiding illness to be the ingrediants needed to turn things around for him.
In March and at 1 year of age, he had not even really been able to hold himself in a sit for any period of time when placed there. Holding his head up straight was incredibly taxing and he was having multiple bradycardic events each week. He was not eating or drinking by mouth and had little to no vocabulary. By June, however, he was a different child. He began playing with toys for the first time and was trying to communicate with sign language and some simple phrasing. He was not only finally holding up his head with strength and getting into a sit position on his own, but he had started getting up on his knees and trying to crawl. He had never made progress with swallowing any food or fluids but during the summer was finally getting in tiny, miniscule bites.
How far we have come..
His growth continued to improve up to where we are now.. using sign language, playing with sisters, laughing (something he never could do in his first year), eating small volumes of various foods for the first time, experimenting with textures and just recently.. swallowing fluids. He is not in intestinal pain half the day anymore but does sleep more than any child I have ever met. He has had many ear infections and some short fallback respiratory and intestinal illnesses later in the year with one incredibly major cardiac event when we thought we might lose him.. but most issues have been overcome more quickly or have been few and far between.. such blessings for us all. Even as he has had to be on antibiotics every couple weeks for some ear infection or respiratory setback, he has not fallen off the cliff with these periods into his "dark" mode where we were a year ago and for that I am so thankful.
I have to say we were greatly blessed in 2011, not only by Sam but by our girls as well. They showed enormous strength and growth amidst having a brother with such special needs. They were supportive and encouraging. They understood when he needed more of the attention at times. Not many children their age have siblings with round the clock health needs and visiting nurses and therapists in and out all day. I have not been able to always devote as much of myself, even emotionally, as I would like but I know they understand. They showed us how much they were growing as well with their strides in school and with their extracurricular activities. They are working on the normal sibling issues but they have far more love for eachother than frustration over differences. I learn something from them every day and even more so.. they are teaching Sam. When I catch myself getting overly frustrated by normal concerns for them.. be it a school issue or particular growth pain like whining or not sharing..or as I experienced this week, a child is not paying attention and backing into a rack of glass in the store where I know the owner is wondering why I brought a child in the first place.. it is then that I have to actually pause and be thankful that these are 'normal' struggles and that in the grand scheme of parenting.. it is not a big deal. They are beautiful blessings to me.. even during the tougher moments.
That said.. I have to say Sammy showed me in one moment this year just how much we take for granted. We watched him take his first steps in early December. (I have to stop typing here to get my kleenex - will recalling that moment always make me cry?) What more could I ask for in the course of this one year? To see him walk before age 2 when we were told he might never walk..? To see him eating when there were those who said I was asking for applesauce lungs if I pushed him to keep trying? To watch him smile and laugh with full abandon while sitting up on his own in his bathtub, grabbing at bubbles that flew out of his favorite Christmas gift when at one time he was just a rag doll unable to fully reach and hold a strand of beads at 9 months of age? Miracles that are beyond our understanding. Priceless moments that have made our year so full.
I know there are still long term health concerns that greatly threaten to steal my joy and I know that if this really is a primary mitochondrial disease condition, it could be a short reprieve from far tougher times ahead but I have to just focus on enjoying each amazing improvement we have experienced. The chaos of life just does not matter.. there are things that are full of peace and if we just calm ourselves and soak it in.. that is what will make our days and years of life worth living. At least this is my hope.
It had been bittersweet to celebrate these strides only to know too well what pain other parents are experiencing right now with their complex little ones. I carry those families in my heart and even though I don't personally know them that well, I feel like I do because we are all mothers.. mothers who just want to see their babies grow up happy and healthy. I pray for strength for these families because I know I can't ask God to take away the hardships of this world.. but I can ask that he help us to get through each day with Christ-like perseverance.
By meeting and learning of other children like Sammy I have never felt such heartache and frustration. HOW IS IT THAT WE ARE ALL SO BLIND UNTIL SOMETHING REACHES IN TO DISRUPT OUR OWN LIVES??? I would not wish the knowledge we have acquired on other families.. but at the same time I want them to know the same level of appreciation for what they have. I can't say that I have found perfect inner peace and understanding, but I have learned much about faith and hope. Maybe you have to have really experienced chaos to appreciate peace.
I feel like that has been a theme for me during this pregnancy as well. At first I went through a whole host of emotions.. from fear to stress to denial to even apologizing for it happening.. to feeling utterly blessed at the opportunity to be a mother once more..above all, I have found my way to the best place of trusting God, having faith and finding some form of peace. No matter what God has planned, it was intended to bless us. Lately there have been external stresses that threatened to shake me up and bring on more chaos but I am having to learn to shut those out.. to be clear about what matters and not to let anything turn my life inside out.
As I approach my delivery/ surgery date in a couple days, I realize that it is not for me to know everything that lies ahead or how to overcome every obstacle. It is only important that I focus on eliminating chaos from my thoughts and find peace about this next chapter of life. God gave me this amazing family. God brought me so much more than a son with Samuel's birth. Now I am blessed to meet this newest little addition and find out what 2012 holds for all of us. I know God is with us and I am thankful for the peace that brings to our family.