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.

surgery day may not happen

well today was suppose to be the day, waiting all day long. We keep getting pushed back. Now sitting at the hospital it might not happen tonight. Who said this hospital was the best. I am not satisfied at all. Maybe tomorrow. This is stupid! I will keep you updated.

Three months can you believe it!!!!!

Hey folks Ryker is finally three months old. WOW! that went by fast. I can't believe he is already that old. I guess it goes fast when you are hanging at the hospital all day every day. Ha. Well we are still waiting for that Gtube surgery. We finally got a date and time. Tomorrow is the day. ENT is going to be doing a procedure to check out his breathing problem situation. I hope they find something so they can fix it. Things are moving along. I keep telling Ryker he needs to come home before Thanksgiving. Hopefully he listens to his mom. I would like to have turkey with all my boys. Love you Parker, Bailey, and little Ryker man!. Well to celebrate Ryker's three months we gave him a bath and he got a baby massage. Also, I got him a "My first thanksgiving" go home pjs. He better be able to wear them. Well friends here's to a good surgery tomorrow. I will update you all on how it goes and what ENT finds out. Love ya. Here are a few pictures. Don't mind his little cheek. He did it to himself trying to pull out his feeding tube. That Gtube can't come any faster.

October 17-October 23

This is going to be a long post. A lot has happened. Well after the GI doctor told us Ryker had to wait for a Gtube, we progressed forward with the transition of weaning little man off of the NJ tube. I was very nervous knowing his past problems with reflux and aspiration. We first started with continuous feeding on the NG tube. Ryker mastered that in two days. I was a little more comfortable until they moved to feedings over two hours. He did fine. No signs of reflux. Thats good, but then over this weekend, since I decided I needed a break, they doctors decided to push my sweet boy too fast to over an hour feeding. He is now showing signs of reflux again. I have voiced my concern, but they said the GI doctor won't put a Gtube in if he can't tolerate it. So here we are reflux, sad baby, and frustrated mommy. The last couple of days have been frustrating because the GI doctor has been out of town. Poor little Ryker is sick of the NG tube. He just keeps pulling it out. Finally tonight I got to talk to the GI doctor. GTube is a go for sure for monday or tuesday. The date will be set tomorrow. Well the next issue moving forward is his breathing. So we found out that his struggling is not his lungs. Not only does he have a narrowing of his nostrils, but the doctor thinks he has tracheomalcia. here is a link if you don't know what it is. http://www.nlm.nih.gov/medlineplus/ency/article/001084.htm

So with the gtube surgery the ENT doctor is going to do a scope procedure and CT to see Ryker's skull structure. If anything come of it, he will have surgery on that as well monday or tuesday. Wish us luck. Here are some updated pictures.

October 14-16

we talked to the surgeon on monday. He doesn't want to do the gtube for a couple of weeks due to his NJ tube. He wants him to tolerate NG tube feeding first.  Ryker is still on high flow oxygen. So the new plan is to transition him off the NJ tube back to the NG tube to see how he tolerates it. He seems to be doing fine with it for the last 24 hours. We are n continuous feeding right now hoping to ween him to over an hour feedings. I am so nervous for him since he had lots of problems before. I hope this works. For all those mommy's out there I was just introduced to Rockabye baby music. instrumental music of awesome people like aerosmith and weezer. Pretty cool!!! Well folks the journey pushes forward.
Here's a picture of little man loving his mamaroo...

October 10-13

Ryker has been having some good days that last couple of days. His breathing is improving and his cubbiness is gone. Even though I really like the cubbiness. On Friday, we found out that we got a new doctor team. Which is really good. Their goal is to get Ryker home as soon as possible. They really wanted to get the Gtube in this week and have him go home next week. I was very happy to hear that. We even did discharge class this weekend. It was a very busy weekend for all of us. It was Parker and I's anniversary on Saturday, so Parker came down this last weekend for the last time. It will be really sad not to see him until Ryker goes home. I hope it's not much longer. We went to lagoon for our date on Saturday. It was so busy we only went on one ride. But we did get to do four haunted houses which was fun. We dressed up in our Halloween costumes (ninja turtles). Many people laughed at us, and some people wanted to know where we got them. It was pretty funny. I guess we just like attention.  Everyone knows that Halloween is my favorite holiday!. We even won four ninja turtle heads for our like Ryker man.  They are totally awesome! Someday he will be able to play with them. Today, the surgeon came to talk to me about Ryker. He was concerned about his reflux and aspiration so we decided no Gtube this week. We are doing an experimental NG tube trial to see him he can tolerate the NG tube again. We really don't want to do the Nisson. Which is a little knot at the top of his stomach. Making it so he wouldn't be able to throw up.  I don't want to alter Ryker's little body for life so we are praying not to have to come to that decision. So we are looking at another three weeks. I am starting to not even get my hopes up at all for when he can come home. I am thinking he might be in the hospital until he is one.  Sad Day!!! Well we did do some family pictures this weekend. I hope you all enjoy them!

weekly post week 40

Tomorrow will be week 41. Ryker has gotten really big! Now at 7lbs 12 ounces. I really can't believe how fast he is growing. This past week has been rough for little man. He had to get a central line due to his veins being little and he was so swollen by the infection. He is now just getting over the infection. He is starting to act like his old self. I even got him to smile a few times today! Its been weeks since the happy baby smiled. He is so big that today he got his first round of immunizations. Also, he has moved up to size ones in diapers. All those newborn ones I guess I will have to return and get the next size up. With all the problems last week he is still on a breathing machine. So we are just playing the waiting game for him to improve and get off of it. The doctors are concerned about the narrowing in his nose. We haven't decided if surgery is a good option. Lastly, today i found a great support group of families dealing with trisomy 9 babies and kids. Its nice to be able to connect and talk to parents that are going through similar experiences. Here are a few pictures.

THIS IS RYKER LAST WEEK ALL SWOLLEN FROM THE INFECTION

THESE PICTURES ARE FROM TODAY....MUCH BETTER

Bad news for Ryker

well dear followers its has been a very bad couple of weeks. With Ryker's official due date tomorrow it looks like he won't be coming home for a long time. He has turned for the worse. After finding out about the aspiration, we found out he had bad reflux. So the reflex is coming up into his lungs and nose making it hard for him to breath. Then we find out he has narrow passages in his nose making it hard for him to breath. The ENT doctor is deciding if he needs surgery. Lastly, today was a bad day. He stopped breathing. They had to put a tube down his throat that breaths for him. Ryker can't breath on his own right now. He might have an infection or a obstructed bowel. If so, he will need to have another surgery for that. They are doing many tests tonight. Results won't come back until Saturday. Little man is really sick. Very pail. He is just a baby! Prayers our way please.