Feeding Tube Awareness Week 2013

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Last February, we celebrated Feeding Tube Awareness Week with our post here

Here is a partial excerpt from the original post:

After Jack had surgery to repair his hypospadias on November 10, he had trouble breathing and was admitted to the PICU at Riley Children’s Hospital.  There wasn’t much improvement in the days following surgery and he then began showing some other symptoms with his belly. On Monday, November 14, Jack went back to surgery and they found he had a perforation is his duodenum.  The recovery from this surgery was very slow as Jack’s stomach was not working.  After weeks of TPN nutrition (through his veins), Jack had a G-J Tube placed. We were grateful for the tube to provide nutrition for Jack and also allow us to bring him home for his 1st birthday and Christmas.

Jack had his feeding tube for around 7 months. Jack progressed very quickly from continuous jejunal feedings to just needing additional feedings at night. Around March, he was able to take everything orally. After 3 moths of not using the tube and proving he could gain (some) weight, we were able to have the tube removed. You can read about that here and here!

Looking back on the last year, it has definitely been an adventure. While Jack progressed from the feeding tube, we have still had many struggles. When Jack went in for his surgery in November of 2011, he was getting all of his nutrition from a bottle. When we weaned him from the feeding tube, Jack went back to taking his formula from a bottle. We had attempted some solids before surgery and Jack wasn’t interested, so we didn’t push it.

We began seeing a feeding team at St. Elizabeth around March of 2012. They gave us some ideas on introducing solids and helped with his caloric needs. We saw the feeding team monthly through the spring. At one point, we began cutting back on his formula to make him more hungry. This didn’t work and he lost weight. While we did make some progress during this time, it felt like we weren’t heading in the right direction.

In September of 2012, we visited the feeding team at Riley. We came home with TONS of new information, recipes and rules. In September, Jack was getting most of his calories from a bottle and swallowed very little food. We learned he had very weak oral motor skills and couldn’t chew well enough to swallow most foods.

Since September, we have been very faithful to his feeding plan, increased his occupational therapy to once a week to help with feeding and put in a LOT of hard work. When we saw the feeding team at Riley in January, they were VERY pleased with his progress. We had instructions to stick with the plan and we also started a new drug, cyproheptadine, which is an appetite stimulant.

Since Jack’s January 3rd appointment, we are pretty much bottle free! He is drinking all of his high calorie milk from a cup with a straw AND he has gained over 1 whole pound. Jack tells me he is hungry, is willing to try most foods and we couldn’t be more proud! We still have work to do on his amounts of foods and being consistent, but WOW! The appetite stimulant was certainly the push we needed. 

So, while Jack no longer has a feeding tube, we still want to do our part to share awareness for tube feeding. I believe Tube Feeding Awareness Week also brings light to feeding difficulties in general. Eating is something most of us take for granted. Of all of Jack’s complications from prematurity, this has most certainly been the most stressful.

Happy Feeding Tube Awareness Week and Keep up the good work, Jack!

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Jack’s Pack!

It’s that time of year again! Mark your calendars, the Lafayette March for Babies will be Saturday, April 27.

This year is special for a couple of reasons. Number one, this is the 75Th anniversary for the March of Dimes. 75 years!  This adds up to 75 years of research, education, vaccines, and numerous benefits to every baby born.

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Number two, Mr. Jack himself is one of the ambassadors for the walk. You  might remember that Jack was also an ambassador for the Signature Chef’s Auction last year. We made a video that will also be used for the walk. If you haven’t seen it, please check it out here. Jack’s picture and story is also on the walker envelopes.

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In honor of 75 years for the March of Dimes and of course, Jack…. WE NEED YOU!

We need you to register and walk with our team. We need you to please donate and help give every baby a healthy start to life. Last year, Jack’s Pack raised over $4.000 and won awards for the top family team and top new team. We want to exceed that this year! Every little bit helps and remember, your donation is tax-deductible.

We will be selling Jack’s Pack shirts again this year and we will communicate when you can begin to order.

But, for now please register and join our team! You can do so by clicking on this link:

http://www.marchforbabies.org/team/t1846927

We are working on some other fundraising ideas including a Spirit Night at Chick Fil A. If you have any great ideas, please let us know.

Thank You,

Henry, Abbi, KP & Jack

 

 

 

2012 Peña Style

As I was reading some end of year blog posts, I decided to sum up our year.

In January, we were working on weaning from the feeding tube and slowly introducing oral feeds. We did have one overnight stay in our local hospital after Jack had a pretty yucky cold.

Jack pulled up on his knees for the first time in January!

jack janIndianapolis hosted the Super Bowl , so we took a trip to check things out.

JANUARY SUPER BOWLFebruary  came with some unseasonably warm weather and an overnight stay at Riley when Jack was sick again. We also celebrated Valentine’s Day and  1 year being home from the NICU.

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In March, Jack had his first haircut! Days later came surgery #5 to have tubes placed in his ears.

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jack marchIn April, Team Jack’s Pack raised over $4000 for the March of Dimes. We also had a celebration for Jack after the walk!

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JACK APRILWith May came baseball and a trip to the zoo!

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 In June, Jack moved classrooms and there was plenty of time to play outside!

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JACK AND KP JUNEJuly was an exciting month! Jack had his g-tube removed and we took a trip to Florida!

JACK JULY GTUBE OUTJULY FLORIDA

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In August,  KP turned 5!!!

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September was big. Jack finally walked and we took a trip to see the feeding team at Riley. Jack also wound up in the ER with stitches on our 6th wedding anniversary.

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SEPT SCARS JACKWith October came Halloween! We also put a for sale sign in our front yard.

for sale20130101-125241.jpgIn November, we traveled to Pittsburgh for Thanksgiving.  The boys also had their Winter program at school.

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We wrapped up 2012 in December celebrating Jack’s 2nd birthday and of course Christmas!

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We are looking forward to a happy and healthy 2013 and hope the same for you!

Pinterest Christmas Wrapup


While I might not have blogged as much as I would have liked to, I did successfully complete several Pinterest projects during the last month.

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If you missed my first post, it can be found here.  One of my favorite DIY gifts I made this year were the Anthropologie Inspired Snow Globes. I pinned these and knew they would make great gifts. In late November, I found several of the small village Christmas trees at the Dollar Tree. I totally wish I would have bought more. The Dollar Tree had a nice selection of different looking trees.  When I ran out of trees, I found this pack at Joann Fabric.

20121231-133839.jpgThe rest of the supplies include various sized ball jars, hot glue, Epsom salt, and I decided to add some sparkle with glitter. First, I mixed the Epsom salt and glitter and got it ready for my jars.

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The glitter is optional, but I think it adds a nice touch.  After I mixed it together, the glitter and salt is poured into the jars. You can add as little or as much of the mix as you would like. I added more than the original pin, but was careful not to cover up too much of the tree. Then the actual tree is glued to the bottom of the lid. I used both hot glue and super glue. I think the super glue worked better.

20121231-133814.jpgAfter the glue has set for a few minutes, the lid can be screwed on and that’s it!

20121231-133756.jpgThese turned out as great gifts for cousins, aunts, and some of Jack’s therapists. I  kept a few for around the house too. I really liked using different jars and different looking trees!

Here are some of my other favorite projects from this month.  While I don’t have the play by play, I will share the links and photos.

My friend Andrea and I created some different variations of these JOY wreaths from I {heart} Nap Time.  By the way, thank goodness for nap-time, It’s allowing me to share these projects!
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I also made these Iced Branches. The branches turned out to be a pretty BIG mess, but they do look pretty!20121231-142231.jpg

Lastly, these DIY Glitter Trees, again from I {heart} Nap Time.  Again, these were messy and I was constantly wiping glitter from the table. But, they are very festive. The sign I found at Hobby Lobby and I think the trees complimented it well.

20121231-142301.jpgSo, that’s a wrap! Like Maggi said, I hope to start earlier in the year and take more photos so I can better document the process.

Be sure to check out the latest projects from the other participating bloggers in the A Pinterest Christmas Series!

Kendra @ The Gibertson Family – Mistle Toes

Amanda @ Without a Doubt – Christmas Cards & Wrapping

Michelle @ this grey house – Sock Vase

Misha @ emerald city diaries – mason-jar-monograms-ornament-cluster

Maggi @ Greg, Maggi & Rodney – Yarn Trees

Happy New Year! Hope you enjoy the last day of 2012!!

Pinterest Christmas

So, I’m a little tardy for the party. But, now that finals are over and grades are entered I have some time to blog about some of the projects I have worked on this season.

A bit of background. In November, my cousin, Kendra, began organizing a fun blog series where friends and family across the states are creating Pinterest inspired projects. Of course this sounded fun, but I am hoping next year I can be a better participant!

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So, where to begin? I think I’ll keep it simple and share some yummy treats I made yesterday. 
148478118936614116_HS2Nkk14_cThe original posts can be found here 

These were easy and look so festive! It was hard to get pictures, because it was pretty messy! I crushed some Oreos via a Ziploc and rolling pin. A food processor would be much easier. After the Oreos were crushed, I mixed cream cheese and a few drops of peppermint flavoring and then blended it in with the crushed Oreos. After mixing the cream cheese and Oreos, I formed 1 inch balls and stuck them in the freezer for about 20 minutes. In the mean time, I tried another Pinterest idea. I feel I am somewhat of an expert in melting bark or candy melts for projects, and thought this sounded like a good idea.

crock potI boiled some water and transferred it to the crock pot. My mistake was, I filled it a bit too full. When I put the bowl of dipping chocolate in, water spilled in and if you know much abut melting bark or candy melts, this equals failure.fail

So, I went back to my trusted method of microwave melting. If you have never melted candy melts or bark, find a nice glass bowl and microwave on 50% power for 3o seconds, stir and repeat. Now, I was ready to dip the Oreo balls.

dip ballsAfter I dipped a few balls, I sprinkled some crushed candy canes on top  and voila!

trufflesFrom the same blog, I made some super easy Christmas Crunch!  This again, was very easy. The mix contains popcorn, pretzels, MM’s, Wilton Candy Melts and sprinkles. I was excited to find a good use for this Christmas Sugar I found at TJ Maxx.

christmas sugarSeriously, this is is so easy. First mix popcorn, pretzels and MM’s in a large bowl. I then melted Wilton Candy Melts using the technique described above.. When he melts were ready, I poured them over popcorn mixture and stirred (hands work best). After the mixture was evenly coated, I laid it on parchment paper and SPRINKLED it with the Christmas sugar.  I wish I would have used more sprinkles… Here is the final product and it’s so tasty!

christmas popcornI have some more goodies to finish today and will be making some deliveries to neighbors, the NICU and doctor’s offices.

Hopefully I will have time to blog more about the other holiday projects I’ve worked on. Until then, be sure to check out these cool projects!

Misha & Amanda’s Paper Tree Forests

Kendra & Michelle’s Yarn Trees

Sally’s Stocking

Maggi’s Random Crafts

TWO!

What a difference 2 years makes! ImageImageImage

I am not sure where to begin! Jack had his 2 year old well visit on Tuesday. At this appointment he weighed in at 19lb 12oz. I am not confident we got a good length, but he was right around 30 inches.

His pediatrician is so laid back and so happy with his progress, but he is still not even on the adjusted preemie growth chart for height or weight. He is gaining slowly and steadily. However, it looks like a visit to an endocrinologist is in our future due to the lack of catch up growth.

Friday, we see the developmental pediatrician at Riley. Jack has made soooo much progress in the eating category. He will try most foods and has some really good days of eating. However, we are still working on the amount of food he is eating. Though his weight gain hasn’t been what we wanted, his chewing abilities and sensory issues have improved so much. I am anxious to see what the team at Riley will say Friday.

Since learning to walk 3 months ago, Jack is running and almost jumping. He loves to kick as throw his football and almost do a cartwheel (don’t ask). Because he is doing so well, he has gone from weekly physical therapy to just once a month! We are working on stairs, which are difficult due to Jack’s size.

Jack is talking more and more each day. He is also putting more and more words together. I was telling him the other day I could not believe he was going to be 2. He looked at me and said “Ellie is 2!” Ellie is is best pal at school. I ask him every day, how was school? What did you do at school? His response “Ellie!” He loves to play with the iPad. He knows how to get from app to app and even how to start up Netflix. He really enjoys the Fresh Beat Band! It amazes me how quickly kids can pick up technology.

The winter storm advisory seems fitting today. The night Jack was born, we had a terrible snow. It took YaYa several hours to get Maggi from the airport to Lafayette. I remember watching the snow from my hospital room. So, today’s stormy weather is not a shock. The kid likes attention!

Happy Birthday Jack. You are one amazing boy!

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Prematurity Awareness Month

Another month almost gone, another month where I had great intentions of blogging more. Life  is busy and I don’t see signs of it slowing down.

This was an important month for us.  Not only did Jack turn 23 months, but November  marked Prematurity Awareness Month.

November 17, was World Prematurity Day. This was a day celebrated around the world to bring attention the the issue of premature birth.  I love this video, it brings such hope.

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In honor of World Prematurity Day and the month of November, we have some important news to share!  Jack’s Pack, our March of Dimes Team, won several awards from our fundraising efforts.

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Our awards included Top Family Team, Top New Team, and we also received an award for raising $4000. THANK YOU to all who helped raise this incredible amount!

In October, our family was chosen to be the ambassador family for the March of Dime’s Signature Chef’s Auction. We made this video for the event. In addition to being the ambassador for the auction, Jack will be the ambassador for the 2013 March for Babies in Lafayette! We are very excited and hope to start building our team soon. We know the walk will take place Saturday, April 27. So, mark your calendars now and we will start hoping for a dry and warm day. As soon as I am able to register our team, I will pass the information along. It’s never early to start fundraising!

We hope you will join us in fundraising and walking on April 27. The March of Dimes does many great things for all babies and we are so grateful for the work they have done.

Next up- Jack turns 2! It’s a bittersweet birthday. I remember hearing early on, most preemies catch up by the age of 2. While this may be true, I don’t see anything magical happening on the eve of December 20th. But, we are so grateful for all of the progress he has made!