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.

 

Are you for real??

 

HE TOLERATED HIS GOAL FEED BY MOUTH

 

Emmett wants to know if there really was any doubt....his eyes are saying 'I look too good without all those tubes to go back now'

 

The Nurse Practioner was very pleased, and will leave the tube out for now, but watch Emmett VERY closely and assess whether the tube is necessary.

 

A little faith and a little food is all this baby needs to come HOME SOON!

 



 

Feeding Day!

Welcome Back....please excuse the lack of posts....this in no way represents all that Emmett has been up to. Emmett has been a very busy little babe learning to feed and grow.

 

It takes a lot of energy and patience (on both babe and parents) to learn to feed and take in enough calories needed to sustain his weight and his hydration. Emmett now weighs more than some babies weigh when they are first born....and he is only corrected to 38 weeks gestation.  Thanks God for chunky babies.

 

 

The doctors are happy with his weight gain, but unfortunately weight gain is not his ticket home. Emmett has to prove to the doctors that he can maintain his weight by taking 75% of his total intake BY MOUTH......not by feeding tube. Emmett has always been on his own schedule, and on behalf of Ryan and Kirby please, please, please, PRAY that Emmett will be able to reach this goal and come home soon.  

 

Tomorrow is a big day because Emmett's mom was able to convince the doctors to give Emmett a chance to prove that he will eat. Part of the problem with being in the NICU is that Emmett falls in line with all of the other preemies who must eat every 3 hours or they will loose weight and become dehydrated quickly. Kirby and Ryan are the only ones who have been by his side consistently for he last 6 weeks, and they are confident that Emmett will be able to reach this goal as long as he is able to wait and feed when he is ready (within reason of coarse). So tomorrow Emmett is due to have his NG tube changed out. The doctors will allow the NG to stay out for 12 hours, and will observe how Emmett feeds on his own. 

 

This new little family has been through enough ups and downs throughout this journey. It is time for them to all be able to be together at home under one roof.

 

Sweet Dreams Everyone...Emmett is getting some much needed rest, as he has a busy day tomorrow !