Jarrett is hard at work building this site, which is coming soon…
Posts Tagged ‘Jarrett’
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Coming soon…
February 16, 2012 by Jason
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A rare blog post: Jarrett at nearly 11 months…
October 30, 2011 by Jason
It’s been a long time since I’ve updated about Jarrett. I’ll try to do better. (Be warned, graphic discussion is ahead…)
We’ve had a great couple of months. Sure, we’ve had hiccups along the way, but late Summer/Early Fall 2011 is full of positive memories.
A couple of weeks ago, we attended Step Up for Down Syndrome. Our friends and family came through for us on this – big time. We set a fund-raising goal for “Team Jarrett” of $1,000. Though the team page doesn’t reflect the few, final donations we received, we ended up raising $1,500 for the Down Syndrome Association of Memphis & the Mid-South. Amazing! The actual walk was a lot of fun, too.
Jarrett is developing quite a personality. To the dismay of his mother, he prefers to be with me much of the time. We’re not sure why – but he has definitely fixated. He loves his sister, and is very curious about Kitty. He’s not quite sitting up yet, but he is getting very good at playing with things like balls, rings a squeaky toys. And, to quote a daycare teacher, “he rolls like a tumbleweed.”
Medically, we are working hard on moving food through his body. Essentially, Jarrett has two problems with his digestive system.
1. Gurgles. I know it sounds weird, but I don’t know how else to put it. The boy’s belly makes the weirdest noises I’ve ever heard. Like a pressure valve opening and closing. You’ve really got to be there to experience it. Our gastro doctor put it best when he said, “It’s not right.” So we are working on figuring out what is happening. An barium swallow test last week ruled out any blockages. Could it be an allergy to formula? Still checking. Related to this may be the occasional bacterial infection that causes him to lose his appetite. Usually, an antibiotic helps with that.
2. Lack of Pooping. Jarrett rarely poops. It’s up to us to clean him out with a catheter and saline, usually a couple of times per day. In between these washouts, unless he spends ample time lying on his belly, his stomach fills up with air like a balloon to the point where he is miserable and won’t eat. Our gastro doctor says occasional botox injections are going to be the likely aid with helping him “relax and open up” down below.
Because of all this, we keep careful track of his daily food intake:
Overall, the boy is doing pretty well, all things considered. It’s hard to believe we’re coming up on 11 months since he was born. We are really looking forward to the upcoming Christmas season, and praying that everyone remains in good health. We didn’t have a very enjoyable Christmas last year, so we are very ready to enjoy the holidays.
-Jason
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Jarrett Plank – January 24th update
January 25, 2011 by Jason
I haven’t posted any updates about Jarrett for awhile, so I guess it’s way past time to update you on what has been going on with the little guy.
Jarrett’s first week at home was largely uneventful, except for a nagging, somewhat frightening breathing problem that kept cropping up. After two doctors appointments early in the week after he came home, we thought he was getting better over the weekend. Then, last Monday, he got a fever, and his breathing was quite labored. Because the doctor’s office was closed, on advice of the on-call nurse, we took him to the Emergency Room at Le Bonheur. As it turned out, that was a good decision. Jarrett has been diagnosed with bronchiolitis, which was causing the labored breathing. Unfortunately, that’s a virus, which means antibiotics don’t work. All the doctors can do is keep him comfortable and let his body work the virus out. Jarrett had to be admitted to the hospital, and as I type this, he’s been in for a week. His days consist of sleeping and getting gunk sucked out of his nose and throat. Tour his hospital room: http://www.twitvid.com/MGA78 This stay hasn’t been easy for Jarrett. Through last week, things got progressively worse. They had to take him off bottle feedings because eating was wearing him out, and they started feeding him through a tube that went through his nose. That was still too much, so now he is on an IV. Unfortunately, our biggest battle at the end of his stay in the NICU was teaching him how to eat…now we’re being told that, once he gets better, we’ll likely have to start that all over again. This stay also hasn’t been easy for Becky or I. Without getting all “woe is me,” it was quite a letdown to return to this hospital life after spending a short 10 days with Jarrett at home. From a practical standpoint, it’s extremely draining to spend all day at work, and all night, overnight, at the hospital. But we don’t want him to be alone at night. Becky and I, with the help of our wonderful family and friends, are doing the best we can juggling our lives and maintaining a presence at the hospital. Luckily, usually when I am filled with despair, she is there to build me up, and likewise I can build her up when she is feeling down. It’s tough, but we’ll make it. Also, I’m really worried about him developmentally. He’s going to have enough challenges without starting out behind because he was cooped up in a hospital bed for the first two months of his life. I’ve rambled on enough for one night. Updates likely won’t come daily, but I’ll be posting more often to talk about what is happening with our dear boy. And hopefully, someday, my posts will be about happier things than sick children!Category Uncategorized | Tags: Jarrett | 3 Comments
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Jarrett Plank – January 5th Update
January 5, 2011 by Jason
We continue to move at an agonizingly slow pace towards release from the hospital…
There's good news and bad news. The good news is Jarrett is eating, and swallowing, much better. That is very encouraging. Unfortunately, although he is taking in more and more milk and formula each day, it is still not enough, and he is slowly losing weight. It's not a huge amount, but he should be gaining weight each day. So, the hospital is supplementing Jarrett's food with additional calories, with the goal of getting him to pack on some weight. Supposedly, if he gains weight for two consecutive days, he'll be allowed to go home. That would mean Friday, at the earliest. I suspect this may stretch into next week. Otherwise, he is looking pretty good. Although he's not been able to be visited by anyone but Becky, myself, and our parents, Ally and my sister were able to see him over the weekend via Skype. That was a lot of fun. I realize a lot of these posts lately have been about us wanting to bring him home. We aren't trying to rush it – we want Jarrett to be 'right' before he comes home. But…we really want him to come home, especially now that he seems really healthy.Category Uncategorized | Tags: Jarrett | No Comments
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Jarrett Plank – December 12th update
December 12, 2010 by Jason
Updating today from the hospital…this is Day #9 for Jarrett at Le Bonheur
When we arrived the hospital this morning, we were almost instantly met by the doctor that will perform Jarrett's surgery. Things are set for surgery tomorrow, he said. We haven't heard back on a final, definite time, but it looks like things will get started around 7:30am. We'll be getting here around 6:00am. During surgery, the doctors will first do a series of biopsies to confirm their diagnosis and measure the extent of "bad" inside Jarrett's intestine/colon. Then, they'll cut out the bad part, and hopefully "pull through" what is good, and reattach. That is the plan. When I asked how long that could take, the doctor said four hours or more. Even if Jarrett's surgery is successful, it's hard to tell where this will ultimately leave him. According to the doctor, only time will answer that question. For now, we're simply hoping that things go well enough that this brings us closer to getting him home. As to when he will come home – we still don't really know. Becky and I spent a long time yesterday holding him and talking to him. Jarrett's a pretty laid back baby, especially when you consider all the wires and gadgets attached to him. He sleeps a whole lot. But he woke up for awhile yesterday, and while he looked miserable, it was fun to talk to him.Category Uncategorized | Tags: Jarrett | No Comments
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Something could happen Monday
December 12, 2010 by Jason
Hopefully in 48 hours we will have overcome the next big hurdle in getting Jarrett home. Monday could be the day he undergoes his “pull through” surgery on his large intestine, if the biopsy confirms he has Hirshsprung’s.
I took this picture in the old lobby at Le Bonheur as we left the hospital today. It was a really crappy, rainy day…then this.Category Uncategorized | Tags: Jarrett | 1 Comment
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Jarrett Plank – December 9th update
December 10, 2010 by Jason
Jarrett turned one week old today.
Unfortunately, that was the only notable thing that happened. We’re still waiting on results from Jarrett’s chromosome test from last Friday, and his biopsy from Monday. These things take time, and we definitely don’t want anyone to rush!
One big bummer this week has been that Ally can’t go to Jarrett’s room. She’s only held him or seen him in-person once! In order to make Ally part of his life, Becky’s mother, who has been staying with us since Tuesday, bought her a recordable storybook version of “Frosty the Snowman.” This evening, Ally recorded herself reading it, and we’ll be able to take it to the hospital for Jarrett to listen to.
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Becky and I want to thank ALL OF YOU who have been so generous with your comments, cards, gifts, and offers of help.
While this has been a very difficult week, it’s been amazing to see how many wonderful people we are surrounded by. I’m not sure we’ll ever be able to thank everyone individually – we’ll try – but in the meantime, know that this experience would be ten times harder without each and every one of you.
I’m also very flattered by people who tell me they appreciate this blog. I’m not much of a “blogger” anymore, but Becky and I really want to keep a log of everything that’s happened to look back on someday. But I’m burning out on writing, so you might see a post or two from Becky in the coming days!
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Jarrett Plank – December 8th update
December 9, 2010 by Jason
Today was definitely the slowest day since Jarrett was admitted to the the hospital, however there were a couple of notable events.
Late this morning, Jarrett met his “Grandma Buckeye” for the first time.
Just before we left the hospital tonight, he was moved to a “step down” room to make space for a more critically ill baby. The way it was explained to us, in the old hospital, the most critically ill babies were kept on one floor, and babies that were not as critical were on another. Now, all the babies are on a single floor, but they are still being kept divided as the hospital determines how to best organize them.
This evening I broke our geneticist’s rule and I went online to read about Down Syndrome, Hirschsprung’s disease, and NICU costs. Probably that wasn’t a good idea. I am a planner, and the single biggest thing I’ve learned since this past Friday is our plans mean nothing. We THINK we have plans, but that’s a joke. So, I sat there and worried.
Here’s a short essay that was forwarded to me by a friend, who found it online. It’s been distributed to parents of children with disabilities for years, but I only read it for the first time this past weekend.
WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
by Emily Perl Kingsley.Category Uncategorized | Tags: Jarrett | 4 Comments
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“I’m a tough boy.” (Jarrett Plank – December 7th update)
December 8, 2010 by Jason
“I’m a tough boy.
I have a tube down my throat, an IV in my belly button, and another in my arm.
I’m a tough boy.
Every day I’m poked and prodded in places that would make grownups cry.
I’m a tough boy.
I’ve only had one bath in my whole life.
I’m a tough boy.
I take revenge where I can. I peed on my doctor yesterday.
Yep…I’m a tough boy…and I’m only five days old!”
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Jarrett Plank – December 6th update
December 7, 2010 by Jason
This morning, as we entered the first full week of Jarrett’s hospitalization at Le Bonheur, it was tough. It was weird to start getting into our old routines this morning without our baby. We’ve just been though an almost eight month long build-up to a much anticipated event, and now it seems like all the air has been let out of our house. His room is empty. His carseat is empty. He’s not here.
Like I said, it was tough. But Monday was a great day for Jarrett. Early in the afternoon, after giving him an enema, Jarrett’s surgeon said he was ready for his biopsy. Instead of Wednesday, which was the last date we heard, it was done today. We’re hoping he will be able to have surgery to correct the effects of his Hirschsprung’s disease early next week. Unfortunately, he probably will not be home for Christmas. Today we learned a little bit about the technology that is built into the floor our baby is on. One neat thing: Each nurse wears a special identifier tag that communicates with a sensor in each patient’s room. When a nurse enters a room, that visit is automatically logged by a central computer at the hospital. This computer keeps track of where nurses are needed throughout the day. It also helps managers locate a nurse instantly in the event he or she is needed in an emergency. Speaking of emergencies, there are systems integrated into the building itself to guide doctors and nurses in the event of a crisis. If there is an emergency in a patient’s room, it can be declared by a special call button on the wall. When an emergency is declared, an alarm is sounded, flashing lights on ceilings in the hall activate, and the overhead lighting system turns into a set of guiding arrows that point emergency personnel to the exact room they are needed in. We haven’t actually seen this emergency system in action, and I hope we won’t, but to hear it described is amazing. Also today, we printed a bunch of pictures of Jarrett and the hospital we’ve been taking, and put together a small photo album for Ally to carry with her so she can see her little brother. She has a lot of questions and I hope we are giving her the right answers. We are still receiving so many kind phone calls and texts, visits and offers of help. I’m having trouble keeping up with responding to everyone, but I really appreciate everything.And, some pictures:
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