this is a BIG ONE

A year ago today.....this little miracle baby entered the world.

 

Last week, my kids got to meet their cousin for the first time

(he really was happy the majority of the time...ha)

 

 

 

 

Today, thanks to the care he received in SLC, his AMAZING parents, and all of YOU who prayed day in and day out for this little guy...he is celebrating his FIRST birthday....and wow what a big ONE this day truly is.

 

 

I know I am biased....but my God he is the cutest one year old I know:)

 

This little video says more than words ever could...Happy birthday Emmett. We love you more than all the firsts you will ever experience in your lifetime.

http://youtu.be/JEYc0zmEJ_E

 

(that may or may not be Emmett's daddy singing....)

 

 



 

Home Coming

 

 

 

In true Emmett fashion, he surprised us all yet again....Doctor's did not expect him to be ready for discharge until AT LEAST 5 days post op.

 

 

 

After only 4 days post-op and 69 days in the hospital, this 9 pound (WOW) bright eyed, baby boy gets to sleep in his own bed, under the same roof as mom and dad.

 

 

What a rollercoaster ride this NICU stay has been for Ryan, Kirby, and baby Emmett. Ryan's text this morning said only a few words (in true Ryan fashion), but he was very thankful for all of the prayers for his son.

 

It is so amazing to hear their joy that they can FINALLY walk out of the hospital WITH their baby in hand. In Kirby's words, 'it is still pretty surreal'.

 

Emmett will continue to bottle whenever and however much he is able to tolerate, and then the feeding tube will be used at night to make up for the difference and ensure he receives adequate calories and fluids. He will be followed closely by his pediatrician, and receive nursing visits these first few weeks home.

 

 

Emmett's journey is now truly just beginning, and on behalf of Emmett's family, thank-YOU for walking beside us in prayer.

 

 

 

SUCCESS

Emmett made it out of a surgery like a stud. He is dealing with some expected pain, but overall did very well. So now we just wait, and see how he tolerates feeds through his new tube. Feeds started this evening at a very slow rate, and will slowly increase with time.

 

Pray for comfort for baby E during his first night post-op. His aunt Kourtney flew in today and is able to give him some extra loving during this time. What a lucky little boy!!!

 

 I will update more tomorrow.

G-DAY

IT'S finally G-DAY.

 

Emmett will go into surgery tomorrow afternoon for his g-tube placement. This is a day that is both very exciting and scary for Ryan and Kirby. No parent wants to have their child go through surgery, and Ryan and Kirby both appreciate all the prayers and support YOU continue to provide. This surgery has also been eagerly anticipated because the entire health care team caring for Emmett agrees that this procedure is what he needs to grow and develop into the healthy little boy we all want to see.

 

We need to pray for the doctors performing the surgery that their hands will be guided by God, and that they will perform this surgery to the very best of their ability. Let's pray for Ryan and Kirby that they can continue to keep their faith and hold onto their steadfast love for their little boy. Let's pray for Emmett that he will be shielded from all the risks surgery can bring, and that he will have minimal discomfort and tolerate his feeds after surgery (feed probably won't begin until at least 24-48 hours post surgery)

I think sometimes, it is easy to feel like 'this kid just can't ever catch a break'. But it is important to remember how far Emmett has come. This procedure will be a great resource for Emmett, and allow him to be a normal baby out of the hospital. I remember when Kirby lost her first son, someone posted ' God only gives us what we can handle'. Kirby responded with a very honest answer saying, 'Well, I wish He didn't trust me so much'.

Kirby, I wish I could be there to hug you and tell you.....now it is time for you to trust in HIM.

 

Let YOUR FAITH be bigger than your fears.....I speak for everyone following his story when I say that you and Ryan have been amazing with how much you advocate for Emmett on a daily basis, and how educated you have become on Emmett's needs. I have complete faith Emmett will be just fine because he has you two right by his side. And finally remember FAITH IN GOD means FAITH IN HIS TIMING. Have faith in your son, and just know that people around this country are praying for little Emmett and we all stand BESIDES you both as you patiently hold Emmett's hand throughout these next few days in his journey. 

 

 

 

 

 



 

 

 



 

 

 

The latest

 

The latest plan is that this Wednesday (11-27-13), Emmett will travel to a nearby hospital to perform a swallow study as a pre-operative test before placing his g-tube probably next Monday or Tuesday.

 

So after Wednesday, Emmett will be able to enjoy the holiday being cuddled by his parents and grandparents who are visiting. Ryan and Kirby obviously would rather be home this Thanksgiving, but they are making the very best of the situation and just thankful that a plan is in place and everyone is on the same page.

 

I know there are a lot of people wrapping this little babe in their prayers. So again, thank-you, for continuing to follow Emmett's Journey. He is one very special little boy and we all just want him to COME HOME.

 

I also wanted to clarify something. Emmett still takes a lot of formula by mouth, but because he was so premature he really needs to be consistent with how much and how often he eats in order

grow and develop like a term baby.

 

 

 

So when Emmett is not able to take his bottle by mouth, Ryan and Kirby give it 'by gravity' through his Nasogastric Tube (feeding tube in his nose)

 

 

 

 While most of us are filling up on big Turkey feasts this Thanksgiving, Emmett will be chilling and enjoying his own food coma. Happy Turkey Day.

 

 

 

 

FAITH

One doctor says one thing, and someone else with the same credentials says another. As a parent, I can't imagine the frustration to not have the answers about your child. I guess this is just one more reminder that WE (family, friends, or healthcare staff) are not in control. There is only ONE who knew Emmett before he had a name, and knows what the future will hold for baby E. We, as family and friends of the Corbeys, have only one option, but to continue to have faith.

 

On a good note, everyone seems to be on the same page that a PEG tube might be a really good thing for Emmett. Amongst a list of reasons why, it will ultimately be his ticket home. As of now, there is no surgery date....as Emmett decided he would complicate things a little more and forget to take breaths consistently over night.....again, a reminder that Emmett does not follow expectations....he is strong willed that is for sure!

 

He is back on a nasal cannula (a tube blowing o2 through his nose). The good news is that he is only receiving room air (the same that we all breathe), but the cannula provides a higher flow to help 'remind' and stimulate Emmett to breathe regularly. Different providers have a few different ideas as to what is causing this new problem. So the plan for now is to perform a few more tests to rule out different causes, meet with the GI doctor/ surgeon, and plan for a PEG tube.

 

On behalf of Emmett's family, we thank-you everyone who is following his story. We all appreciate that so many people are praying for baby E. Emmett has family literally around the world, so we are pretty confident our prayers will be heard.....we just have to wait and see how they will be answered.

Change of plan

During the last week, Emmett has continued to feed on and off for Ryan and Kirby. Unfortunately, he was not been able to maintain his feeding goal consistently, and so the NG ('feeding tube through his nose) was re-placed. I think we can all agree tube or no tube, this is one precious babe;)

Ryan and Kirby want nothing more for their little boy to come home, so naturally this was a little bit of a disappointment. Please PRAY for their continued trust in the doctors' caring for baby Emmett and to keep faith throughout this process.

Emmett has proven that he CAN eat, but their is still lots of questions as to why he does NOT WANT to eat....at least not  like a new born should. The doctor's are not jumping to conclusions, and they are unable to predict anything for Emmett and for his future.  Time will only tell, but as I look back on his whole journey, I am so happy we have all the time in the world with Emmett.

Because Emmett is now officially corrected to 40 weeks, the health care team has lots of expectations for him. Unfortunately, Emmett has not met all of those goals. So after careful consideration, the next big step for Emmett is to get G Tube. The goal is for Emmett to still feed by day, and then whatever fluids and/or calories he is lacking, it can be replaced through this surgically placed feeding tube over night. This sounds like a huge step, but their are some definite benefits for Emmett. Emmett will not be hooked up to machines all day. He will still get to roll around and be a normal babe. It will also barely be noticeable under his clothes. And most importantly, as long as there are no unforeseen issues with this new tube, Emmett can finally COME HOME.

Although, this is not what Ryan and Kirby may have envisioned for their baby they are both being amazing. They have done their research, and are already educating themselves on how to feed Emmett through this tube.....(some of us go to school for years to learn stuff like this....so this is impressive). The hope is that once Emmett is home, he will have a more consistent routine and learn to get all of his nutrition on his own by mouth. In the meantime, he will have a feeding tube available to assist him with his needs.

I will post more about the surgery in the next few days.

 Please continue to keep this family in your prayers.