March of Dimes and Other Updates…

I’m sorry for my absence on the blog.  It has been incredibly busy the past few weeks. I am counting down until the end of April when I will be done with my Master’s Degree! I’m looking forward to enjoying the summer with my boys!

Jack is doing okay, he’s had two overnight hospital stays in the last month, both for different reasons. He continues to plug along and is getting very fast with his crawling. He really likes to make big brother mad by turning off the XBox while he’s playing a game or watching Netflix. He’s so ornery, when I tell him no, he shakes his head. If I move him away to distract him, he crawls right back. I’m thankful he’s healthy enough to be ornery!

Jack will have surgery on Friday, March 7, to have tubes placed in his ears. He has had fluid in his ears since birth that is affecting his hearing. But, up until this point, his ear canals were too small. He has also had 3 ear infections in the last month, so next Friday can’t come soon enough! We saw Dr. Rink, the urologist yesterday. Jack will need a second surgery to complete the repair of his hypospadias. However, Dr. Rink is in no hurry to do this. We will most likely wait until a year from now. He wants to give Jack time to grow and develop before we put him through another surgery. It was such a beautiful day to be out and about. Jack loved being outside in the stroller!

As most of you know, we have started a team for the Lafayette March for Babies Walk on April 28. Our team, “Jack’s Pack”, is the leading  team for the amount of money raised.  Thank you to all who have contributed. If you would like to contribute, or would like to walk with us, you can register here.

The March of Dime’s Mission is to help promote healthy full term pregnancies. They also provide money for research to help treat premature and sick babies. Through their research and education, they help moms and babies worldwide.  Did you know 1 in 8 babies in the United States is born too early?

In addition, we are selling T-Shirts with all profits going to the March of Dimes. Many thanks to my sister, Maggi, who worked with a graphic designer on the design. They turned out amazing! If you are interested in purchasing, please email me at abbipena@yahoo.com. Sizes available are Adult S-XXXL and Youth S-L.  Orders are due by March 27. We will have the shirts by mid April.

That’s all for now, I must  get back to grading! Have a great rest of the week!

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Happy Valentine’s Day

Valentine’s Day will forever be memorable for us. One year ago today, on Valentine’s Day, we brought Jack home from the NICU. He was ready a few days earlier, but we were waiting on him to pass his car seat test. For the car seat test, he had to sit in his car seat and maintain his vital signs for around an hour. He finally passed and we were so happy to bring him home!

The ride home took forever as we got stuck by a train on Concord. I squeezed in the backseat between the car seats so I could keep my eye on him the whole time! Jack had been hooked up to a monitor for 8 weeks where his vital signs were constantly monitored.  When it was time to go, he was unplugged from the monitor. I didn’t know I would be so nervous without he monitor. During those first days I was constantly worried about his oxygen saturation. But, we all survived! 

Jack has come such a long way in a year. He has gone through more than most can imagine and is such a strong boy. He is developing quite the ornery personality and keeps us all on our toes. It’s so fun to watch him play with Kendrick as he is more mobile now.

We hope you all had a terrific Valentine’s Day!

What a difference one year makes!

 

Feeding Tube Awareness Week

February 6-12 is Feeding Tube Awareness Week.  You can find more information here

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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’s G-J tube goes directly into his stomach from the outside of his belly. From the stomach, the tube goes into the jejunum. The tube has 3 ports.  Jack’s tube looks just like this.

When the tube was placed and when he came, Jack received his formula through the J or jejunal port.  We would leave the G or gastric port open to drain into a diaper. Eventually we were able to clamp the G port and start Jack on oral feedings.  Jack would then still receive feedings through the J port at night.  We then progressed to his feedings going through the G port, which Jack tolerated much better. With the J feedings, he had a lot of gagging and vomiting which is not uncommon.

Last week, we visited the Feeding Team, which consists of a dietitian, speech therapist and occupational therapist.  Their goal is to get Jack off the feeding tube in the next month. Our first assignment was to turn his rate down (we cut it in half) at night. This would hopefully  make him more hungry during the day. We also had instructions to only let him have 30 minutes with each bottle.  Our last assignment was to offer yogurt or another solid he tolerates (which is none at this point), three times a day.

How is it going? I would say it’s not right now. Jack hasn’t been eating well during the day when we limit him to 30 minutes. We tried pudding per the speech therapist’s recommendation and he was not a fan. When Jack gets something in his mouth he doesn’t like, he gags and usually vomits.  He does love yogurt and has been doing well with that.

Today he was spitting up a lot of his bottles and I’m wondering if he has a little stomach bug. There is never a dull moment around here!

We have a weight check a week from Wednesday and if he is gaining (which at this point he is not), we will cut out the the tube feeds completely. I sure wish it would be this easy, but I think Jack will need more time. We will reevaluate next week after the weight check. Next Monday, Jack will visit Dr. Engum  to have his  G-J tube switched out for a G tube since we no longer use the J port. This will be nice, because Jack won’t have a tube protruding from his belly.   It will also decrease irritation around the site and hopefully be more comfortable for him. Please keep Jack in your thoughts as we make this transition.

 

I’ll leave you with this touching video in honor of Feeding Tube Awareness Week.