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.
I've been following this blog and praying for you all! I don't know your family; I'm friends with someone who like this blog on Facebook. But my own daughter spent her first 7.5 weeks in the hospital so I have been honored to pray for another family in the same situation! I hesitate to comment with this but... I would very strongly consider whether the PEG tube is a good idea. We did it with our daughter, and it ended up being unnecessary after we discovered she had allergic colitis. All we had to do was switch to hypoallergenic formula and she is fine. The surgery is a big deal and her site was very irritated and painful. She was just a different baby (not in a good way) after they placed it and I totally regret doing it, especially since the doctors were on the fence and we could have just used an NG until we figured out the issue. I know every situation is different and I don't want to make you doubt the doctors, but maybe ask if they would let you go home with an NG. The PEG is just so invasive and if it's not necessary, you really don't want to do it! Continuing to pray as I know this is a hard call!
ReplyDeletethank you for praying for our family. Unfortunately we have already talked with the doctors about allowing us to go home on the NG tube. They will not because he is not eating 75% of his overall volume consistently so they think he will need the tube longer than just a week or so, and now that he is older they are concerned he will pull the NG tube halfway out and aspirate. Emmett's problem is not how his body is tolerating breast milk, but his overall strength to be able to finish an entire bottle at this time. He is weaker than a normal 40 week baby, due to his trauma at birth. He will get stronger, but with more time and work like tummy time. The PEG tube is not what anyone wants, but it allows him to be home with his family while he works on getting stronger. The doctors believe he will do better at home, but we don't want feeding times to be stressful and not a relaxing experience or we will cause a bigger problem down the road with oral aversions. I hope Emmett doesn't have any negative side effects from this procedure, but unfortunately it is what the doctors feel is best for him to grow.
ReplyDeleteWe continue to pray for you baby Emmett, Ryan & Kirby. You are in our hearts & we know you are in good hands. Sending so much love & strength to you three.
ReplyDeleteLove, J, J & K