Finally on High Flow!

well Ryker finally made it on high flow oxygen. Thank goodness! Its on high settings of high flow but at least we can start weaning him more. That was a long three weeks of intubation and CPAP. He is being fed continuously right now but only like 3ml of milk an hour. We are working up to more but poor baby and his reflux he just doesn't like the acid feel. I am still hopeful in two week he can come home. At least that would be a mom's wish.
For those of you that don't know, my dear husband found a new job. We will be moving back to Utah. I am super sad to leave behind our amazing Idaho family, friends, ward, and house. It is sad for me, but Parker is excited to finally be with Ryker and I. And he is very excited about his new job and the opportunities he will have in a bigger company. And our adventure moves forward. I believe Heavenly Father likes to pile not just one trial load, but several. I am not sure what we are suppose to learn from the last four months and the few months to come, but I sure hope we learn it. I have had spiritual confirmation we need to move to Utah, but I am super sad about it. Exciting for the grandparents I am sure. They all wanted us to come back. Here's to hopefully a great adventure and many blessings.

Ryker is so cute these days!!!

Well we had our esophagram today. It went well. So his esophagus doesn't have a hole anymore, but it's not completely healed. There are still signs of injury. So he won't be able to be feed orally for a while. Swallowing will be hard a challenge. But he can be fed through the gtube so we started that tonight. He was having a great day today. Smiling and playing with the nurse and I. It was very fun to see him back to his normal self. I even caught a cute Ryker smile on camera. Yea!!! Hopefully he tolerates feeding. It will take a while to get up to the normal amount of feeds. They are also concerned about his digestive system not working properly because he hasn't been feed for a while. So let's pray all goes well this week. We are still working on oxygen, still on the CPAP machine. Hopefully we can start weaning him off soon. But I think feeding him is the goal this week. Pray all goes well.

Ryker is finally a Rockstar again!

Well Little man is moving forward. He is still on a cpap machine, but it's getting a little easier to breath. He is getting a esophogram tomorrow morning to make sure everything is doing great. Afterwards, hopefully he will start eating again soon. His bowels are finally waking up. He did a massive poop yesterday for the nurse.  I am now able to snuggle him like it was. I stayed at the hospital for a long time last night just because I love to cuddle him. He was his cute little self last night. Smiling and playing with his little tongue. A happy kid again is always nice. YEA! I did do some video of the little man doing his tongue thing. It's pretty cute. Hopefully you enjoy it. We are still praying he comes home for thanksgiving. That would be the best thanksgiving gift ever!

Finally a step forward!

Tuesday was Ryker's surgery day to remove the stent. Parker thankfully was able to be there. The surgeon told us his esophagus is healed. No more hole. So they extubated him. Ryker is now on a cpap machine. It might take a while to get on track for high flow. He is off morphine and not sedated anymore. His esophagus and nose is inflamed and sore, but everyday he is improving. Finally a step forward. Hopefully no more steps back.

Update on post surgery

Well folks Ryker is trying to recover from surgery. He is still sedated and intubated. The doctors informed me today that he will be like that for another week. I guess they are a little nervous to take out the stent on Thursday so they are waiting until Tuesday. I personal feel better about waiting to make sure it is all healed. I don't want anymore stupid complications during surgery. Ryker is struggling with being swollen again with all the fluid being pumped into him. It looks very painful. They are trying to help him pee it off with medicine. He peed off 250 grams of fluid today. He did get his catheter out today. So he is now peeing again like a big boy.  I haven't been to the hospital the last couple of days because it's too hard to see my little baby in the state he is in right now. I don't like to see him suffer in pain. The doctors keep giving him morphine for pain, but sometimes when I look at him it seems like it not helping much. Thank goodness he will not remember any of this. Poor little guy. The ENT doctors are thinking they will just do the nose surgery the same day as getting the stent out. So we will have a while for recovery. Someday he will come home, but it's looking like not for a while. Here is the sad little boy's face for you.

a couple days after surgery and more information

first off I know some of you are getting offended or concerned we won't respond to questions about Ryker. But please remember this is really hard for us. We are dealing with it the best we can. So if we don't answer you, remember we still love you. We are just taking this last "hiccup" really hard. Ryker is a sick and injured baby right now. I didn't go to the hospital yesterday because I was so mad at the situation. Frustration and tears have been my world the last few days. Its been nice to have distractions such as game night on Halloween, trick or treating, and the Home Free concert tonight. But the frustrations and tears are still there. Auntie Tami came with me to the hospital today. Ryker needed a blood transfusion because his own blood didn't have enough oxygen which was wearing out his little body. He got another central line and has been on antibiotics for infection precautions.  His blood has been drawn many times the last couple of days. Yesterday his breathing tube in his mouth was not working properly. His trachea is a very tight fit so they put in a breathing tube through his nose. He will be sedated for a week on morphine and other sleeping aids. They don't want him to move and mess up the stent in his esophagus. So no one can hold him. He has to be very still. They are looking at a week before they check the stent again to see if the esophagus is healed. Then in two weeks or so they are going to fix his nose. So December is a good goal for us now. Ryker will be grown out of all his newborn clothes by the time he leaves the hospital. so sad. Another update will await in a couple of days.

Surgery Day! Sad Day!

Well we did it. We got surgery, but it was not how it was anticipated. ENT did their thing. They found that Ryker has a small airway and small nasal passages. Nothing new there. I are going to do a CT scan tomorrow to see if there is a blockage in his sinuses. Now to the bad news. The Gtube procedure was going well. They placed the tube and it was great until they stuck a scope down poor little Ryker's esophagus to check placement and the doctor ripped his esophagus open. So he was leaking fluids into his airway and lungs. Awesome! right. well they had to put in a stent to protect the hole so no fluids can get out. Now he will be in there for another month to six weeks. They have him on a breathing machine again with an IV pumping him full of antibiotics so he doesn't get an infection. So he won't be feed for a week. He will need another surgery to take the stent out in two weeks. If the esophagus doesn't repair itself, well we will be put onto a waiting list for a donor esophagus. They will have to replace his with a new one. And the journey pushes forward. Today was a hard day for mom, dad, and baby. We do appreciate all the support, but for now, we don't want any phone calls. We love you all and we will reach out to you when we feel not overwhelmed of the sitution.