Makenzie Rye

July 18th 2009 at 2:10 am 
Makenzie Rye Webster was born.

This tiny 6lb 19 1/2 inch. beautiful girl.
As soon as they placed her on my stomach her eyes popped open.
Her arms stretched out and she was here.
She never cried.
She was just happy to be alive.
Everything was perfect.

She did amazing the first 2 months of life. 

During that time we went swimming, took a road trip to bear lake, took a road trip to the cabin down south, lots of walks, lots of shopping trips, lots of restaurants, lots of parks, lots of sun, lots of smiles, lots of friends, lots of family, lots of pictures lots of loves, lots of visitors.She was our pride and joy. Life happily revolved around her. She completed our family and made it a dream come true.
At 2 months Makenzie started to breathe a little funny. She was making a squeaking noise and acting like she was working a little harder to breathe. Her pediatrician kept assuring us it was normal and that she would grow out of it. By the first part of October she started having spells where she would lose her breath and be gasping for air. After the second time she did this we rushed her to the children's hospital. We ended up spending the night and checked out the next day with no answers. They couldn't find anything wrong. As the next couple weeks went by it was almost daily that we were calling her pediatrician saying she isn't getting better and is almost getting worse. During this time she also started eating less and less. She didn't seem hungry. I was nursing until the beginning of Oct. when she completely quit. At the time we didn't know why but found out later it was because she didn't have any strength to suck so a bottle was easier for her.

The first week of November she seemed really bad so we took her to her pediatrician who said she didn't look right and referred us to an ENT (ear nose throat) doctor at Primary Children's Hospital. After we meet with the ENT he decided to try surgery for what he thought was laryngomalacia. They cut away a flap of skin in her throat and hoped it was the cause of her difficulty breathing and eating. After surgery we stayed at PCMC for 2 nights before we were able to go home. After we got home our little girl seemed to keep getting worse. She wasn't eating hardly anything and was only wanting her Mom. She would only lay in one position and would cry if you held her any other way. Her doctors assured us it was just because she is having trouble after surgery and that she should be fine soon.

November 16th was Ryan and my 3 year wedding anniversary.  We had been trying to get family pictures done for a couple weeks but kept canceling because of Makenzies health.  I had a feeling we had to get them done and no matter what we had to do them on the 16th.  We were going to bring Harley but because we were so worried about just keeping all our attention on Makenzie we left her at home.  We went to one of my favorite parks and our amazing photographer took some of the most amazing pictures ever. 

On November 17th my mom was babysitting Kenzie while I went to work. I got a call half way through the day from my sister, who was with them, telling me Makenzie kept turning shades of grayish blue. She was worried about her and said she thinks I should take her to the doctor. I left work and took Makenzie to the ER at IMC. I decided if I went to the hospital like that and she really needed to be admitted they would take us by ambulance and she would be seen sooner. AND. That's exactly what happened. They hooked her up to the pulse ox. and her oxygen levels were in the 70's when they should be in the high 90's. They put oxygen tubes in her nose and rushed her in an ambulance to PCMC. I rode in the ambulance with her while Ryan followed behind. They admitted her to the 3rd floor for testing. Her weight had dropped to 8 lbs. At her 2 month apt she was 9 lbs. She was extremely dehydrated and malnourished.
For the next 2 days they ran hundreds of tests. We were hardly ever in her room because we were going from one xray, to one mri, to another test. They had to keep turning her oxygen up because her stats kept dropping. On November 19th a team of specialists came into Makenzies room. By this point she was having so much trouble breathing she was laying on her side and arching her back so much her little head was touching her back. She was trying to get air anyway she could. As I stood next to my little girl that day trying to catch words I could understand in that doctor lingo being thrown around I felt alone. I was scared. This whole time I kept thinking she would be fine, there is just some medicine she needs to get put on and everything will be okay. That day was the first day I was completely unsure. Within minutes the neurologist order for Makenzie to be transported to the PICU and intubated. Everything was thrown in her crib, I grabbed my bag and we were off. Down to the second floor. We were greeted by Ryan (who raced to the hospital as fast as he could from work) and a team of doctors and nurses ready to help Makenzie. They asked Ryan and I to go out of the room while they intubated her. We sat out in the hall trying to digest everything that just happened. We were scared. In a matter of minutes we had to mature enough to understand our daughter was in the hospital, intubated and not sure whats wrong with her. We are young and this shouldn't have happened to our family. We haven't lived yet, we haven't showed our little girl the world yet. After we went back in the room we were amazed at the difference in Makenzie. We were with her every second of the day the past few months. It was hard for us to really see how much she was struggling to breath until we saw her breathing with ease. We both broke down. It was so amazing yet so horrible. We held her little tummy that was so small her skin was just hanging there. We kissed her millions of times and rubbed her little arms and legs.

The next few days were filled with tests... tests... more tests... and introduced to the wonderful new world of CPT and cough assist. Since she had this breathing tube in, she was unable to move around her secretions like the rest of us. When you cant move around secretions they build up and your lungs start to collapse. Every 3 hours were these treatments and every 3 hours Makenzie hated life.
It was on November 21st that after many test we were told Makenzie most likely had whats called Spinal Muscular Atrophy = SMA. They had to send in a blood test to confirm but all other test pointed to SMA. We were devastated. We were told right up front there are different forms of SMA and she may not have the more sever case and could live a fairly normal life. We understood no matter what type she had she most likely would never walk, run, dance, sit up... SMA is a degenerative disease which would mean at some point -whether it be at 1 year or 20 years she would lose everything and become paralyzed. Her brain however- would always be perfect. SMA doesn't effect the brain so she would have the brain of anyone else her age. We did research. We talked to other families with SMA. We prepared ourselves for life with SMA. In order for us to do this financially we put our house up for sale, Ryan's truck, We listed most all of our things online to sell, I even told my boss I wasn't going to come back to work and to find a replacement. At the time we felt we were given this new life and although its not like we imagined and dreamed we were going to take life by the horns and run with it. We realized our dreams have changed and as long as we have each other nothing else matters.

November 30th 2009. Makenzie was scheduled to be extubated (breathing tube taken out). They thought we could take the breathing tube out making that the first step to getting our girl home. That morning was amazing. Kenzie and I kept counting down the hours and minutes until she was tubeless. Anticipating being able to hold her whenever I want and spin in circles with her, kiss her lips!  I couldn't get the smile off my face that whole morning.

But as they extubated her she became distressed. Her levels started dropping. The doctors kept saying she just needed to calm down and take a breath. I was pretty much laying in the crib with her. I was holding her face and stroking her arms. I kept telling her to just breath and that she is okay. I tried to reassure her that she is doing a good job and that I'm here. She wouldn't stop looking at me. Her eyes will forever be in my mind. She was struggling, hurting and I wasn't helping. She was scared. I kept asking if they could do something for her. What felt like hours but only minutes passed when they said she isn't ready and that they needed to intubate her. They rushed me out of the room and began putting that damn tube back down her throat.

Makenzie tried. She was trying so hard that day. She wanted to breath, she wanted to be held without tubes. She worked harder than anyone could have worked but her body just couldn't do it. I am so unbelievably proud of her. I am so honored to have a daughter who is so strong. After they let me come back in I just kept telling her how amazing she is. I kept kissing her and telling her that I was proud of her. December 1st- SMA blood results came back- NEGATIVE. Happy, sad, scared, relief, frustrated, concerned, unsure, angry- were just a few emotions that day. No SMA but we didn't know what that meant- better or worse. Her team of specialists took a step back that night- they went through all of their paperwork and her tests and said they would be back the next day with somewhere to go. December 2nd. Makenzie was schedule for a test. They did an xray of her chest. They watched her diaphragm. It worked perfect while the machine was on, but as soon as they turned it off, her diaphragm didn't move. Its paralyzed. December 2nd. 2 amazing doctors sat me down. They told me those words. Spinal Muscular Atrophy with Respiratory Distress = SMARD. Its similar to SMA but its on a different gene which is why the test came back negative. It is a motor neuron disease, meaning there is progressive destruction of the cells connected to the spinal cord that control motor function, such as breathing and speaking. Cognitive function is unaffected. Like all motor neuron disease, there is no cure. It effects their breathing first (paralyzed diaphragm) and then moves to the rest of her body. Its a very new disease. Only being tested in the US within the last 6 months. Before that it was only tested in England. There is no research being done solely on SMARD. They know almost nothing about it. They know what gene it comes from, they know both parents are carriers. Every child is different and since its so new and so little people with SMARD they don't know exactly what she would or wouldn't be able to do in the future. What they do know is that she would need to be trached and on a ventilator 24/7 for the rest of her life. She would need 24 hr care which would mean a home nurse. At that moment she is at the best she would ever be. She wouldn't learn to walk, crawl, sit, run, sing, dance. She would slowly be deteriorating right before our eyes. They refer to this disease as the Lou Gehrig disease in infants. We were given a few horrible, unimaginable- no parent should have to decide options. - leave Makenzie in the hospital on life support until her body gives up on its own - trach and vent her. bring her home and slowly watch her go. she most likely would be completely paralyzed before age 1. - take her off life support and let her go.

Immediately i said i don't care what i have to do, give up and learn i will be bringing my daughter home and taking care of her. i didn't want to hear anything else. i only wanted her. i didn't care if she could walk or talk i would not love her any less. she would be here and that's all that mattered. ryan had a different plan in mind. for the first time through this whole ordeal we were not on the same page. he sat me down and said- we will do whatever is best for makenzie. she has to decide. if she isn't ready to go, than we will trach and vent her and take her home. we will dedicate our life to her and never look back. but. if she is ready to go, we have to. she has completed her journey in life. this is her life. over the next few days our world was completely turned inside out. most everything is a blur. we loved on makenzie every second. we told her stories and we talked to her. every morning i would come to her bed- give her kisses and ask what she wanted. after a few days- in the middle of a cpt/cough assist- my answer came. i looked into my daughters eyes and felt like she was talking to me. she told me she was done. she said she completed her journey, she did what she was suppose to do and she was ready to be free. I couldn't tell anyone for a few more days. i finally told ryan. he said he already knew. she told him right after we found out she had SMARD. we wouldn't tell family or friends or even the doctors. we weren't ready to face our reality. we wanted to give her everything we could while she was still here. we read her books, i told her all the stories i planned on telling her when she got older like how her dad and i met and got married, we played, we smiled, we laughed, we sang, we loved each other unconditionally. we decided we would take her off life support on December 13th at 7:00 pm. A few days before we talked to her doctor and asked if Makenzie could be a donor. We told a few family members and one friend. We asked for no visitors the Saturday before and no visitors that Sunday morning. We asked Ryans parents and my Mom to come to the hospital on Sunday at 5. Be with her for a few hours and be with us while she went. December 12th we gave Makenzie her first Christmas. We had a tree, we played Christmas music, we gave her a present and we wrote her a letter. We held her all night.

December 13th- minutes after our parents came in the room Makenzie started to make a funny noise. I asked Ryan to get the nurse who rushed in. She ran back out and started yelling at the doctors that her breathing tube was out. A team of 20ish doctors and nurses came running. The on call doctor looked at me and said- are you ready? Her tube was already out. I tried to take a breath and said okay. I held my little girl. I squeezed her tight. Ryan held us both. We kept telling her that we were there. We told her we love her. We promised we would be with her again. and then- our world, our life, our reason, our future... took her last breath. Makenzie Rye Webster born July 18th 2009 at 2:10 am went back to heaven on December 13th 2009 at 5:25 pm. She is our life- She is everything we are. Everyday is a struggle. We miss her beyond words. We ache for her daily. Our arms are heavy without her in them. We vowed to keep her alive. She did so much good in this world. She changed so many lives and she continues to do so with her story. There is so much more- so many more things that happened in the hospital but these are the main points. I never left her side. I lived at PCMC from November 17 - December 13. I never left. I ate, slept and showered there. I wouldn't leave her side. I was able to hold her very little. They had to restrict her movement so anytime I could hold her was very short and I couldn't move. It didn't matter though- those were the greatest moments of my life.

She is our world. She is our future. 
She is our everything and we will live for her for the rest of our lives.

If you want to read everything in more detail you can start from the moment we announced I was pregnant HERE!


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