Wednesday, September 10, 2014

Goodbye Stanley

 On September 9, 2014, we were given the instructions from little brother's dietitian to start weaning him from his G-tube since he finally reached 20 pounds!  It will be hard work to calorie pack him and get him to drink Carnation Instant Breakfast, but we are absolutely thrilled that he no longer needs over night feeds and determined to keep it that way!  Our goal is having the doctor officially take the G-tube out next spring!  Stanley is the named we picked for little brother's feeding pole.  Little brother has been using "Stanley"every night since March 30, 2013 (thanks to IHC Home Health Care). We can thank Stanley for helping little brother gain weight and making major milestones, but we also have encountered a lot of unexpected uh ohs too!
1.  It takes a lot of extra time to get him ready for bed (open new feeding bag, calculate fluids, prime his tubing that connects to his feeding bag, change his diaper, put on loose fitting pajamas (absolutely not zipper kind whatsoever), place gauze pad over g-tube site, put on g-tube extension, tape tube extension two times to secure it in place, flush tube, feed him a small bottle, connect tube to his g-tube extension, read a book or listen to music, rock him to sleep, etc! The key is he has to be asleep before we will lie him down otherwise he will play with his tubing, ugh!!!
2.  I have failed to properly close the tube right after flushing the tube! As a result, water or Boost Essentials leaked all over me and baby, yikes!
3.  I didn't attach his tube extension from his g-tube site by turning it properly and within minutes Boost leaked all over his clothes!
4. Due to little brother preferring to sleep on his stomach, occasionally his g-tube extension pops off and leaks Boost all over his clothes, bedding, etc!  What a rude awakening and mess for us to clean up! Now we tape the extension on the top near the g-tube button to keep it in place!
5.  For whatever reason, on a few occasions the iv pump stops pumping boost and says it's done when there is still a lot of fluids in the bag! Huh?!
6. The machine freaks out if we try to prime before it cycles through the rate and dose numbers after turning it on. So then we have to shut it down and try again! The key is patience!
7. While baby brother tosses and turns in his sleep he gets the cord wrapped around his body and a couple times his neck, ack! So scary! I recall his doctor noticed his umbilical cord had a small knot after birth probably from him flipping and moving around in the womb. He moves all over the place while he sleeps!
8. I'm not a huge fan of the chocolate Boost! Not only does it stain his clothes, bedding, etc when his extension tube pops off during a feeding, his bowl movements are shockingly similar to the color of his chocolate Boost the next day! Little brother also seems upset during the night with the chocolate Boost compared to the vanilla or strawberry.
9. Obviously, it's been challenging to get him to self soothe and sleep train him while tube feeding him when we cannot leave the room until she is finally sleeping! Luckily, I've been able to get him to take naps during the days without a hassle. He can go to sleep without me holding or rocking him now!
10. After his tube feed is done, occasionally we wake him up when we disconnect the tube extension from his button and rip the tape off his side. I am surprised that he can sleep through it most of the time!We definitely won't miss Stanley! Goodbye Stanley!

Thursday, September 04, 2014

Mini Summer Vacation, Back to School, and 15 Month Checkup

Mini Summer Vacation

On August 13-17, 2014, We drove down to Mesa Arizona to attend a wedding/sealing for our nephew and spent some time with Grandpa and Sharon Free. We drove during the late afternoon and night to make it more comfortable on little brother.  Surprisingly, it was our first time experiencing Arizona during the summer heat. Every time we stepped outside it felt like an oven (dry and very hot).  At this point, we decided we could never survive in Arizona's summers. We love being outside and cannot imagine paying for the AC running non-stop. Thankfully, Grandpa Free had a summing pool to cool off. We went swimming a couple times while there. It was fun being among our Arizona family members celebrating the wedding of Danial and Rebekah. In fact, Rebekah's family did a fun family tradition! They threw Danial a tool party. We had dinner, guests brought tools wrapped in newspaper or paper bags, and had a great time getting to know Rebekah's family better. When the happy couple opened our gift, we got to ask them a question. It was a lot of fun and they got a lot of amazing tools!
First Day Back to School
Summer of 2014 came and went really fast this year. Usually I'm ready for the girls to go back to school due to the non-stop boredom complaints, but this year I was sad they had to go back to school. The first day of school was on August 18th for big sis and little sis started the next day. Big sis is now a sophomore in high school.  Wow, I can hardly believe it! Am I really that old? Didn't I just graduate from high school not too long ago? Also, 2014-2015 is little sister's last year of elementary school. It's crazy how fast kids grow up! Good luck to big sisters and I hope they have a successful school year! Go Vikings and Grizzlies, GRRRRRRRRR! 
Fifteen Month Old Check Up and Shots
Milestones: On August 22, 2014, little brother had his 15 months old check up. He weighs 19 lbs. 4 oz. and is 31.25 inches long. His head circumference was 18.9 inches.  He is slowly making some progress. To our surprise, he is growing in length, but continues to struggle to gain much weight. I'm happy he is at least on the charts! As for his developmental milestones, he isn't talking much or walking yet... I cannot believe he prefers to scoot on his bum all day long. In the past, he has taken a few steps, but for whatever reason, I think he is not confident enough to walk yet. His doctor warned me that he probably wouldn't walk on time... It's frustrating to see many other toddlers younger than him already walking.  Even though he scoots around, he is getting into everything and opening cupboard doors yet. He does occasionally take some kitchen food out from the "lazy Susan" and pull out all the dish towels and bibs out of the drawers. We finally had to install child proof latches under the sinks. Walking brings on more toddler challenges, but I want him to be normal just like any other toddler his age. I have to keep reminding myself that he had three surgeries and I shouldn't compare him to others because of what he has went through. In the meantime, he continues to have monthly early intervention appointments via Kids on the Move (physical therapy and speech). He had occupational therapy discontinued last month due to making most of his feeding goals and his weight seems stable (not losing but slowly gaining)! We are so proud of him! If for whatever reason, he has issues again his occupational therapist will come back as needed.