Lessons learned...

Nothing makes me happier than to see my baby eat...through his mouth! I was thinking of how I nursed my other kids till they were at least 1 year old without a problem and that was the best thing for them. Well, Ryker has shown me that every baby is different and even though I didn't get to nurse him for long, I'm still giving my baby nourishment and bonding with him. Whether it's a bottle, through his G-tube or through the IV in his arm, I'm giving my baby the BEST thing for him. 

I never dreamed I'd have a baby that would struggle so much to grow and thrive....to not be sick...to not have to fight for their little life. The day Ryker was born the doctor said he was a fighter. Weeks later during his long hospital stay, doctors and nurses were always commenting on what a fighter he was. To this day, I've never seen a kid SO determined to roll over or try to sit up. He grunts and groans trying so hard...it's his attitude. He teaches me determination and patients. 

Since his pain level has decreased immensely, he smiles more times than not. Someone asked me if he smiled all the time because in his pictures he is always smiling! It's true. He's a happy boy. Content with life. 

14 pounds 9 ounces and counting...

People are so nice!

This is Ryker's aunt posting today.  First of all, I just wanted to say a big THANK YOU to all of you who have supported Ryker and his family!

They have gone through A LOT since last April, and it's just been so wonderful to see all the support they have gotten from neighbors, friends and even complete strangers!  Jenny feels very blessed and has a renewed hope that everything will be all right!

Marc and Jenny have a neighbor who is a photographer and has made such a nice offer to anyone looking to buy some art for their walls!  If you go to his site and buy a picture, use the code "Ryker" at checkout and you will receive a 5% discount AND the proceeds go to Ryker!    You can check out SBFOTOS UTAH right here!   Also, check out the "Ryker's Sponsors" page for more ways you can help Ryker and his family and get something in return!


Thank you to all who have shared Ryker's story, have left positive messages of hope, or donated to help pay for Ryker's medical bills.  May God bless you for your kindness and compassion!

If you would like to sponsor Ryker and his family through your business, please email Emily at HopeForRyker(at)gmail(dot)com.  

Baby Steps

So, Ryker saw his GI doc (Gastroenterologist) last week. I asked him about Russell Silver Syndrome (a rare form of Dwarfism) and gave him some journal articles my nurse friend had printed for me. He hadn't even heard of it. I didn't expect him to, I was just hopeful. He said to talk to the Geneticists about it in March.

However, I asked him about stopping Ryker's Erythromycin medication (helps with digesting food faster) since he takes lots of fruits by mouth including prunes! He said sure! It's now day 4 and I've never been so happy to have my baby poop! I also, started him on Greens First. It's like Juice Plus if you've ever heard of that. I just mix it in with his chicken, prunes, and a probiotic. He LOVES it AND it's good for him! Anytime we stop a medication we celebrate! 

Today Ryker weights 14 pounds 4 ounces or 6.46 kilograms. I've learned that all the answers don't come at once, but I can research and do all I can so when those answers do come, I am well prepared. Knowledge is power. 

An Explanation

A few of you have asked "what's a G-tube?" or "what's a PICC line?" I thought I'd post some pics to explain.

 The G tube was placed surgically. They make a literal hole in the stomach and suture it to the inside of his tummy. It's really quite amazing. This is where he gets a 12 hour feed of a hypo-allergenic, high calorie formula at night. The picture on the left was taken at night and the one on the right was in the morning. You can tell after his treatment in the morning he's a little more puffy but pees it off during the day.

I can put medications through the G-tube too (the picture on the top). You can see how he grabs at EVERYTHING and I also have my 3 year old helper beside me holding his legs. 

The PICC line is like a more permanent IV line. It's like the worlds smallest straw and it goes in his vein, up his arm, chest and ends at his heart. He's hooked up to it for 12 hours at night. And through his lines he gets fats, proteins, calories, etc. But instead of his stomach having to work to digest it, his liver does the work. Not the most ideal way to gain weight but in his circumstance it's working miracles!

He started rolling over this week! I will try and post a video. :) 

Mother Knows Best

Ryker gained a good ounce a day this week which is right where he should be! He's 13 pounds 12 ounces. 

I'm so extremely grateful for this blog. I know Emily was inspired to start it! It just so happened that one of her friends saw Ryker's picture (a very knowledgable mom and also inspired) and mentioned getting him tested for Russell Silver Syndrome. I've been researching it and it sound like I'm reading all about Ryker! It doesn't explain all his digestive problems but it could be the reason why he's not growing at the rate the doctors want. 

We go to see his Gastroenterologist this Thursday at Primary Childrens. I will see if he has had any experience with this syndrome and if not, then we will see the Geneticist in March. 

I'm so happy that I followed my gut and asked literally 5 different doctors to see a geneticist until one of them pacified me and said okay. Persistence pays off! I even had one doctor tell me that genetic testing is expensive. I told him that having an explanation for all this treatment would be well worth it. (Turns out our insurance would cover it anyways.) Another doctor told me it wouldn't benefit him at this time. Treating Ryker's symptoms and getting him to grow is fantastic don't get me wrong! But I want to know WHY and thanks to some MOTHER'S that acted upon promptings, we may have answers a lot sooner than we ever thought. 

You're gonna hear him roar!!!

A video that Ryker's mom made, showcasing some of what he's been through in his short life. ♥ (Please be patient, it takes a minute to load.)

Weight Check

Ryker gets weighed every Monday morning. Today he was up to 13 pounds 4 ozs! The doctors want him to gain at least 1 1/2 ounces each day. They are hoping that Ryker will only need the PICC line until May or June. He will keep his Gtube for possibly years depending on how fast he gains weight. However, he sees a Geneticist in March because the doctors still don't know why he's not gaining weight. It would seem he's not absorbing fat and calories, however, tests contradict that theory. As for now, he is a happy boy and making progress!

Ryker's Story

Ryker came into this world 2 months earlier than expected.  His mother was suffering from toxemia and HELLP syndrome, and to save her life, he needed to come on April 25, 2013.

He was a meager 3 pounds and 8 ounces and 16.5 inches long.  He spent 3 weeks in the NICU where his parents visited him one to two times a day.

He came home on May 16th and was welcomed with loving arms by his two big sisters.  They were so excited to have him home, even though he was smaller than some of their dolls!

Ryker did okay for the first few weeks, but then things turned scary. Ryker stopped eating. He was lethargic and not gaining weight. His belly was extremely distended. At one of his weekly doctor's appointments, his doctor told his mother to take him to Primary Children's Medical Center in Salt Lake. 

 Moments after being admitted, Ryker stopped breathing. They put him on oxygen to encourage him to breathe. They found his belly was so swollen that it had pushed his lungs above his nipples inhibiting his breathing. He was then rushed down to the Pediatric Intensive Care Unit (PICU). A myriad of tests were run to determine what was making Ryker so sick. The doctor told his parents, "your son is very sick. He's going to get worse before he gets better." This was the beginning of the nightmare that would play out over the next 6 weeks in the hospital. He was transferred back and forth between the floor and the PICU.  Doctors were puzzled. 

After week 3, one night his tummy swelled again and he closed his eyes and his heart rate dropped. At 2 am that morning, he was rushed into emergency exploritory surgery. The doctors found that some of his bowel had died so he had part of it removed. Over the following 4 days, Ryker had 2 additional surgeries to check for more dead bowel. 

During his stay, he saw 2 geneticists, 2 endocrinologists, GI docs, multiple surgeons and doctors. There were still things they couldn't figure out about Ryker. One doctor told Ryker's Mom, "I hate to burst your bubble, but there are other things wrong with Ryker, we just don't know what they are."

Ryker finally came home on July 19th. He was home for a few weeks, when he had to go back to get a G tube inserted into his belly.  He was able to come home from that operation in just a few days.

 

After a few months of continuous G tube feeds and PLENTY of food by mouth, he still failed to gain the weight he needed. He was admitted to the hospital again in November after his tummy became distended and was sick and dehydrated.   

The doctors decided to insert a PICC line into his arm where he could be given nourishment (TPN) intravenously.

After many tests with specialists, Ryker has been diagnosed with "Failure to Thrive".  This means that the doctors don't truly know what is wrong with him and why he isn't thriving. 

Ryker has been a blessing to all those who know him.  He has the sweetest spirit and has been quite happy despite all that he's been through in his short life.  His smile is an infectious one--one that can light up a whole room.  Everyone who has met him is touched by his sweet personality. ♥ ♥ ♥

This little guy has proven to be quite an expense.  After 5 hospital admissions, many doctors visits (GI follow-ups, pediatrician bi-weekly weight checks, surgery post-op visits, endocrinolgy visits and geneticist visits), G-tube and g-tube supplies, PICC line and supplies, hypo-allergenic formula, speech therapy, weekly blood draws, food and fuel to the doctors and hospitals, home visits from a nurse to change PICC line dressings, and other supplies, the expenses are quickly piling high! This has left Ryker's family footing a hefty bill to keep him alive and well!

What can you do?

Please, please, if you have any change to spare, it would be most appreciated and received with grateful hearts!  Every little bit helps!  Also, please share Ryker's story with your family and friends.  Donations can be made on the right or down below through Paypal (a Paypal account is not required).

♥ Thank you for your help! ♥

Ryker and his family

Please share Ryker's story by using the buttons below!  Thank you!