Cherish the Little Things

Monday, April 20, 2009

I am starting this post to keep family and friends updated on Ella and Ayden and how well they are growing. I truly am the luckiest mom in the world! I titled it "cherish the little things" because so often we are looking for the big miracles in life that we miss the little miracles every day. Having 2 children with special needs has taught me to cherish every moment with my children. I have learned to cherish every step, hear every word, and be thankful for every new milestone they accomplish everyday. Ella and Ayden love life. They remind me everyday to not waste my life thinking about what I don't have or what i cant do, but instead to be grateful for what I do have and what I can do. They work hard to do things most of us take for granted, like getting dressed, talking, walking, and even playing. In future posts i plan to outline our journey and how it all began. How my life has been changed by two pretty amazing children. I have the honor to be their mom! Everynight before I tuck my kids into bed we have a ritual. I say..."Out of all the little boys/girls in the whole wide world how did Iget so lucky to get you" and recently my little boy (who had lost all ability to communicate with words and now can talk again) said "no mommy, I am lucky"
Oh how I love those momemts when I can communicate to the souls of my little kids through love. When i would continue to fight to make sure my little boy would know how valuable and loved he was, even when he couldnt show me back. Love does not have to have words...it is present in those who cant speak a single word. Love often...use words.. only if neccessary!

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Our Story

Finding out we were expecting Ella was one of the most exciting moments of our lives. I remember the first person I told was an old lady I sat next to in the cafeteria at the hospital. She started talking to me about the cycle of life. Her husband was in ICU and was not expected to live. She told me the only regret she had in her life was that she never had any children. She then asked if I had any kids. I smiled really big and told her I had just found out I was pregnant. I had not even told my husband. She told me to cherish each day and not take one day for granted. We ate lunch and I continued to be mesmorized by the thought that this stranger who is losing someone she loves so dearly, was only thinking about the blessings of life. I am not sure I would have had the same composure had something so sad be happening to the love of my life. Never would I have guessed that this would have been the start of a reminder to cherish every day of life and not take a day for granted.
I was on bedrest for more than 6 weeks for Ella. I started having an elevated BP and swelling. They never really worried about Ella as much as they were worried about my health. We were sent to the hospital and I was induced 3 weeks early. After more than 2 days of a pitocin induction, Ella was born. Her cry was weak and I knew instantly something was wrong. I kept saying "what is wrong with her" "what is wrong with her"
Very quickly apgars were obtained and i was told to feed her and she would be fine...she just needed to eat. I knew deep down something wasnt right. My mommy gut was already working! She latched on to eat and stopped breathing. I screamed as loud as I could. It was my worst nightmare. I couldnt lose her..I just couldnt! They wisked her away and stabilized her quickly. She was transferred to another hospital where they could provide more critical care. Within arrival at the new hospital, I was told they had done a head MRI and found a grade 3-4 bleed in her brain and We needed to make end of life decisons in case she suffers brain herniation. I was utterly devasted. It was the worst moment of my entire life. After 24 hours and with no seizures they reexamined her MRI and a pediatric radiologist was called in. It was determined it was only a grade 2 (which our neurologist from childrens now says was at least a grade 3 bleed). Our little girl was slowly being weened from oxygen and remarkably was making great progress.
The neonatologist was a co-worker and he came and talked to me. I could tell he was very concerned. He told us they were doing a complete work up on her. They didnt know why she had a brain bleed. She had some wierd facial features, a sacral dimple, a hip the clicked, and an aneursym in her heart where a hole had closed in heart. I knew as a nurse,that they were concerned about something but couldnt figure out why. Ella continued to progress and was healthy except an elevated bili, and loud breathing. We were discharged and finally i had my baby. I tried and tried to feed her. Food would pool out of her mouth. She would make such loud noises when she would breath that others would stare. I would pump then feed her for 1 1/2 hours then pump again. I would complete this cycle all day long. She kept having wheezing. Finally a PT was at our house for therapy and saw what was going on. She made a lot of calls and we got help. I had told the doctor all of this but they just kept saying "you are a new mommy..you are just overly worried". She was shortly diagnosed with laryngealtrachealmalcia (which is why she had noisy breathing and struggling so hard to eat).
She continued to have wheezing and severe breathing problems. After many attempts for her to gain weight, a ph probe showed severe reflux, Ella had a nissen/fundoplication with a GTube placed. Within a week of having it placed she started vomiting. The surgery was supposed to stop the vomiting. We were so upset and confused. She kept losing weight and getting pulmonary symptoms. We moved due to my husband 's job and she kept getting sicker. We had to find a new GI doctor in our new area and fast. Our surgeon sent us to Dr. Mousa. She found what was wrong with Ella and immediately we got a GJ tube and she started making gains. They also put Ella on Cisapride. Cisapride is a study drug. It was pulled from the market due to cardiac arrest in some patients. We are able to utilize the drug with close monitoring because there is no other drug to help her. Ella has an intestionalpseudoobstruction. She has reverse parastalysis and gastroparesis in her stomach and small intestine. It is a chronic condition without a cure. She was a year old and only was 11 pounds with continous feedings in her tube.
Evey milestone was delayed. We worked everyday to stretch her legs, went to therapy 3 days a week, and started trying to teach her sign language. She attended a developmental preschool. I could tell she was so smart. Right after she turned 4 years old, she came home and said "mommy, I missed you today." All I could do was cry. She never spoke a complete word and one day a full sentence comes out. Just the words I dreamed of hearing! Such sweet words. Words that will forever leave an imprint on my heart. Every day when she would come home, I would tell her how much I missed her while she was at school. Finally I knew she heard what I had said and knew how much I loved her. When your child is nonverbal, you are often consumed with thoughts like "do they know I love them". So many parents take this simple blessing of words like "I love you" forgranted! I often wondered if I would ever hear her say these words.
She is now 6 years old. She is (and always has been) one of the greatest blessings in my life. She talks, walks, now eats some by mouth. She still has to be tube fed at night, and since last year has had to be cathed. She has a neurogenic bladder. She is believed to have a secondary mitochondrial disorder.
Just a month and a half ago, Ella had a chromosome test completed that showed she has chromosome 17 q microdeltion syndrome. Suddenly, I had some answers. I began researching in a furry. I wanted to know all I could to help understand why Ella has her many health struggles. I soon found a family I never knew. I found a yahoo group with famlies of children with the same syndrome. I looked at pictures and all I could do was cry. These kids looked just like my sweet Ella. One of the key characteristics of the syndrome is overly friendlyness. That is my ELLA! She loves everyone no matter who you are. She is the single most kindest person I have ever met. She sees the heart of people. I used to wonder if we ever met angels on earth. I think I met an angel the day she was born. I am forever changed by her love and life!

When Ella was about 3 years old, I started feeling sick. I remembered this really sick feeling. I had it once before. I had it when i was pregnant for Ella. Immediately, I took a test and sure enough it was positive. This was not what I had planned. We didnt want to have another child. We knew Ella was sick and we didnt know why. We didnt want another child to suffer like her. I was terrified. What if this child is sick too? We saw a genetic doctor. They told us it was a fluke Ella was sick and this little one would more than likely not have these problems.
We felt relieved but felt it necessary to see a high risk doctor just in case. We planned a c-section because once again i had increased blood pressure and platelet problems. Before the c-section we told the doctor we felt like we were done having kids. It was too big of a risk with this "unknown" genetic issues and my health. In the c-section, i heard them say that little Ayden was here and then i remember going in and out of consciousness. I kept hearing "she is losing alot of blood. Where is she bleeding from? Get dad with the baby." Ayden was wisked away and placed in special care. He had low sugar and needed IVF's.
I woke up being pushed in the hallway. My husband lookin through the glass window of the special care at our sweet baby boy. They held him up so i could see him. He was on IV's for 12 hours and the I finally got to hold my sweet baby. After Ella, I thought i could never love someone as much as i loved her. I didnt think i had enough love to give to another person. I immediately realized I loved him just as deeply as my sweet Ella. Ayden had a slightly elevated bilirubin but otherwise, we had a "HEALTHY" little boy!
Ayden was meeting every milestone and I had a deep sense of peace as I didnt have to worry if he had eaten enough calories. I didnt have all the medical appointments I had with Ella and all of her health struggles. I finally understood what "healthy" felt like to most parents. Everything changed right before my eyes. Ayden went to the doctor for his well baby check. He was meeting every milestone. He was doing great! They suggested we do the next round of vaccines and also the flu vaccine (since his sister was medically fragile) and his last hep b shot. I explained that it seemed like a lot of shots. They reassured me he was healthy and no reason to be concerned.

I remember this day as if it was yesterday. Ayden started spiking a high fever and doing wierd things with his hands. I just thought maybe he didnt feel well. He didnt get better. Slowly I was losing my little boy. I would look in his eyes and he no longer looked at me like he always had. What was wrong? Within days he no longer knew us, he didnt know his sister, or his cat. He quit sleeping at night. He screamed and held his ears. He had a blank stare. He lost all speech and the ability to feed himself. I just kept saying to myself...he just doesnt feel well once I get him feeling better it will be ok. Until I got the dreaded diagnosis of Autism. I remember crying and praying "why God, why".
Since the diagnosis of autism, I have spent hours and hours researching how to help Ayden and what we are doing is working. He is slowly making huge gains and many days he doesnt look like he has autism at all. I no longer see autism as a death sentence. Autism traps a creative sweet child in a body and mind that wont let them escape. We have to find ways for him to escape the world of autism.
Our journey has been a rough road, but we have found such peace and joy in celebrating the small things in life and not taking a day for granted. We thank God for every blessing in life especially our children. I dont know where we would be without God. He has carried us many times when we felt we couldnt take another step.
Our marriage is strong and we have grown closer together as husband and wife because we have decided to face the challanges as a team. My husband is one my heroes in my life. I have seen him grow closer to God through this journey. He is a safe place to fall when I have a rough day. I love the way he loves me and loves our kids. He still takes my breath away when I look at him and my heart beats as fast as it did on our first date. He is more than a spouse, he is my soulmate!