A Standing Ovation for Amanda & Family

June 25, 2012

We are honored to include the very eloquent (and wise beyond her years) Amanda Fleming’s letter in this post.  After watching “little man” she was moved to connect with Nicole and tell her 10-year old brother Shel’s story.  Amanda, we give you a virtual STANDING OVATION for sticking by your brother and your parents through this very tough journey as a family.  You are truly amazing!  Please update us when you have a moment.  

Hi. I’m Amanda Fleming. I’m 19, and a sophomore in college.

I have a ten year old brother named Shel. Shel was born with a severe mitochondrial disorder. I don’t want to assume that you don’t know much about it, but most people don’t, so I’ll give you a little bit of background. Not nearly enough research has been done on mitochondrial disease, and the disorder varies greatly from person to person, so it’s difficult to generalize. Shel’s mitochondrial disorder is increasingly progressive. Born without any sign of the disorder, he has since developed enough medical problems that I myself am not even aware of all of them. I suppose most importantly, he has dysautonomia and gastroparesis. He currently has a G-tube, a J-tube, and a central line. He can’t eat, can’t speak, and loses abilities everyday. He used to be able to eat regularly, and at one point he could say a few words. So he knows what it was like, and remembers it. Walking is becoming difficult for him, especially being attached to so many tubes and pumps. He does use sign language, and knows quite a bit, but not enough to express himself to the point where he is not constantly frustrated.

Shel in the Hospital

I’d say that Shel has spent at least one third of his life in the hospital. When he’s in the hospital, up to weeks at a time, my mother does not leave. She sleeps in the hospital bed with him every night. I almost feel though that the time that he’s home is even more difficult for her. We’ve tried many live-in nurses, but the medical attention he requires is so complicated that only my mom is able to keep up with it. I haven’t seen her do anything that I would consider enjoyable in years. I’m sure you know how intense the care for G and J tubes, along with a central line is. He receives at least 35 different doses of medication a day, which she must administer through his central line.

I’ve only recently admitted to myself what an affect this has had on my family. I’ve spent about 4 months of the last three years in a psychiatric hospital for depression. All of the many, many therapists that I’ve seen have assumed that my issues are attributed to his. This has always made me furious. But recently I’ve discovered that maybe, at least a little bit, I’ve been in denial. My family seems perfect, even to me. I couldn’t ask for a better one. But it is quite obvious the strain this has put on my parents’ relationship. Because my father is the only source of economic support in our family, he works from early in the morning late into the night. He hasn’t taken the time to learn how to take care of my brother, but I honestly can’t blame him. I can’t even imagine the impact it will have on everyone in my family, especially Shel, if they separate.

Shel at Home

 

I am not sure whether I want to spend my life with a man or a woman. But I am even more sure that I’m already in love with my future child. I’ve always felt it, and felt as though I know them. I can’t really describe it, but my child is already a part of me. I’ve had my heart broken twice in my rather short life time. But what makes me feel better is that I know that I will love my child more than I’ve ever loved anyone else. I already do. The thing is, the mitochondrial disorder that my brother has is genetic. There is a chance (I’m not sure to what degree) that my child will have the disorder. This breaks my heart, because I honestly do not believe that I am capable of properly caring for a severely ill child, mentally or physically. I wish more than anything that I could.

I can’t remember the last time I did something alone with my mother, or even have longer than a ten minute conversation with her. Often when Shel is in the hospital, they are three hours away at Boston Children’s Hospital. Having been in high school, and now college, rarely do I have the opportunity to visit them in Boston. During my junior year of high school, a month and half went by that I didn’t see my mother or brother.
Amanda Fleming

Shel’s Sister, Amanda Fleming

But, in my eyes, it’s worth it. Despite the physical and mental pain that Shel is in at all times, he has a spirit stronger than anyone I know. He is also the most loving human I’ve ever encountered. He spends most of his time in bed, and one of my favorite things to do is lay with him and read or talk with him. My mom tells me that every morning as soon as he wakes up, he asks if I’m okay. His prognosis does not look good. I’m aware in my mind that he won’t be with us much longer, but I can’t accept it in my heart. After ten years of his life, I’m finally starting to. It hurts more than anything.
I guess what I’m saying is that I’m so thankful that you made the documentary that you did. I can’t imagine how hard it must have been to make that.
I hope that you have time to read and respond to this, but I absolutely understand if you do not.

With all the love in the world, 
Amanda Fleming


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PREEMIE UPDATE: Kylie Pelleymounter

June 13, 2012

In our June edition of our Preemie Family newsletter we learned about precious Kylie Pelleymounter born at 23 weeks at 1 lb 2 oz. In celebrating Father’s Day, her father Josh shares with us an update on her at now at 2.5 years old.

by Josh Pelleymounter, Kylie’s Father:

Kylie’s NICU journey showed what an absolutely amazing fighter she is and proves that miracles happen. After being rushed down the hospital hallway for an emergency C-Section (just like on TV – we were all literally running), Kylie didn’t want to wait any longer and was born breach in the surgery prep room.  As fate would have it, the Level III NICU was literally on the other side of the wall. A flood of doctors and nurses came in and whisked her away where the battle began.

<em>Ava as a Baby</em>

Kylie in the NICU

She would eventually have to overcome a total of 15 surgeries during her 200 day NICU stay for various issues. Add in her 70 blood/platelet/plasma transfusions (and no, that’s not a typo – 70 is correct) and you can easily see how hard she fought. She had a perforation in her bowels requiring surgery to remove part of her small intestine, and she had an ostomy bag for a while then of course the reanastomosis later on down the road to put her back together. She had 6 different brain surgeries to treat her hydrocephalus with a shunt – she ended up getting an external shunt first since her belly wasn’t ready to absorb her CSF due to all her surgeries. Then it needed to be internalized and with that came a few that failed.

Her eyes were of course premature so she had pretty severe ROP (Stage 4), but she was far too fragile to undergo the typical laser surgery so our only option was to take our chances and do nothing or have her eyes injected with a new experimental medication that was still in clinical trials – that choice was easy. We went for the injections and they worked miracles. Without those, she would have certainly been blind. And we were told that to date, she had the best response of any infant that received the injections and would be a major factor to help get it FDA approved! She would end up needing the laser surgery a year down the road, but the injections saved her eye sight.
After bouncing on and off every type of ventilator they had in the hospital (and having severe edema swelling to over 3 times her body weight which took MONTHS to get rid of), she finally was able to breathe on her own. Even though we were told countless times to prepare for a trach and a ventilator at home, Kylie continued to defy the odds and only required a low flow nasal cannula just before finally being discharged.

<em>At 6 Months</em>

Kylie at Home!

As with many other preemie parents, we thought the hardest part was behind her, but after being home for only 2 days, we were back in the hospital for a solid month which was by far the worst of it all – following a routine surgery for just stitches to help heal an open wound over her shunt she went into shock and we were told she had literally less than an hour to live. The hospital Chaplain was called in, they closed her curtain and said a prayer with us all basically letting her go, but we refused to give up and so did Kylie. She slowly responded after the help of some of her prior doctors and nurses that knew her so well that we called for assistance. She would eventually come home again on New Year’s Eve 2010.
We were hoping 2011 would be an easier year, but her 19 ER visits every so often throughout the year would prove us wrong yet again – each visit would always be accompanied with an admission. Some were 2 or 3 days, some were a week, some were longer. Of course we refused to leave her alone for a single minute so my wife and I got very used to seeing each other only in passing to trade off – one would stay with Kylie at the hospital, the other would stay at home with Kylie’s 2 year old brother (Ryan).

I’m proud to say that her last hospital stay ended on Christmas Eve, 2011 so we finally had her home for her first Christmas last year and she hasn’t been back to the hospital since. That didn’t mean she still didn’t struggle in other areas. Her weight was the biggest challenge as she only weighed close to 13 lbs when she was 18 months old. We finally found the right combination of calories and formula for her to start packing on the pounds and today she weighs in at 19 lbs and she even has some cute little fat rolls!

Crawl Kylie Crawl!

Developmentally, she’s making unbelievable progress. She’s so close to crawling, just learned to sit up on her own, she’ll clap when you tell her to, and she’s starting to get on her knees and pull up onto things.

Kylie has such an amazing and happy personality you can’t help but smile every time she looks at you. And she plays so well with her big brother (who adores and is so sweet to her).

As is the case with all micro-preemies that are blessed enough to make it home, Kylie is so amazing and will hopefully help to give others some much needed inspiration.

I never thought the most inspiring person in my life (by far) would be barely 2 years old, but it’s Kylie for sure. Never give up, never stop fighting, always believe.

Deb Update: Kylie is a quick learner going from a fast army crawl into a full-on crawl just recently. With all of this new activity, she’s burning up those calories so the nutrition had to change for the g-tube. In the meantime, she is also exploring how to bottle feed. Go Kylie!

Photo Credits: Josh Pelleymounter

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