We are going home!!!

Anton did end up having refeeding syndrome so we had to stay one more night in the hospital but WE HAVE BEEN DISCHARGED and will be going home once we pack up the room. Thank you guys so much for your prayers, love and support :) 

Anton might go home today!

Sorry I haven't had a lot of time to update the blog. Anton is doing SOOOO good! They started feeding him formula through his G-Tube on Tuesday and he is now up to his full feeds and tolerating them well! They were a little concerned that he might have refeeding syndrome since it had been so long since he had eaten but they are doing blood work before we go home to make sure he doesn't have it. If he doesn't have it we will go home today if he does have it we will be in the hospital for a few more days. 

 

Patrice left early yesterday morning and I miss her so much! Sandy, Courtney, Anita and Patrice were such an amazing blessing to have here the first week we were in the hospital. I couldn't have done it without them.

I also have to thank my amazing husband, he has been running around like a chicken with his head cut off taking care of us. He is working, coming to the hospital to see Anton and I, going to see Kenya and Judah at my Mom's, cleaning our house and washing our clothes. He has been AMAZING and I couldn't do any of this without him!

I wanted to also thank our families for all of the support they have given us and thanks to Momo and Gramps for watching Kenya and Judah while we are in the hospital.

Thank you to Jen also who has been coming to the hospital to see us then taking our laundry (including cloth diapers) home and washing them for us! I have lots of people to thank :)

I also wanted to say thank you to everyone who has brought us food or sent us money for food. It has been so nice not to have to worry about getting food!

And a HUGE thank you to the ladies from our church who went to our house and cleaned it they said it wasn't bad but I am so glad it's done!

Jason and I did our first dressing change alone yesterday and it went great. Patrice helped me cut bandages before she left so that helped a ton. We did it in two hours and we both were talking about how much easier it was than we thought it would be. Anton did great and his skin is looking really good right now. He had a few spots that have been pretty infected for the past week but they are starting to clear up! 

Anton is the EASIEST baby EVER! He was only fussy the first two days we were here and after that he has been so good! He is playing, talking, and learning more signs everyday. He understands us when we talk, which has happened a lot faster than we thought it would. He can sign "more", "thank you", "please" and "help". He can make the animal noises for bear, pig, cow, elephant and monkey. He says "Mama", "Papa", "Oppa" (the way they say "uh-oh" in English, I think) and "Tom" (Russian for "there"). He is the most amazing little boy and he is such a gift to our family! 

Our hospital stay has gone great. I have really enjoyed getting to spend a lot of time with Anton and I haven't really gone stir crazy yet. I miss Kenya and Judah but I have gotten to see them a few times so that has helped. 

Anton is adjusting well, in fact we had our two week post placement visit with our social worker today and she said, "This is more than the honeymoon phase after a child comes home, he is really bonded to you." If he is upset he reaches out for me to hold him and he lays his head on my cheek and I just snuggle and comfort him. He cries if Jason or I leave him and he LOVES it when his Daddy walks in the room. He really is doing great! 

He is recovering well after surgery. He is in pain but seems for the most part to be tolerating everything really well! He is a trooper.

 

I don't think words could ever describe how God has worked on our hearts through all of this. I just praise Him more and more everyday for the amazing things He has done in our lives. Anton is such a gift, as all of our other children are, and I can't stop praising God for these amazing blessings! 

Thank you all for praying for Anton and for us! We LOVE you all and I pray more then anything that you would know Jesus Christ as your personal Lord and savior. Please take time to read the tab at the top of our blog that says "The Gospel" there is nothing more important than knowing where you will spend eternity and there is only one way to God and that is through repentance and faith in Jesus Christ alone. I love you all and pray that today you would be made right with God, there is no greater gift that you could receive then the gift of salvation.

LOVE you all so much!

Patrice's Time With Anton & Post-Surgery Update

Patrice did a "short and sweet" post talking about her time here with Anton. It includes updates after the successful surgery and some great pics she took. Here are just two to tease you:

What are you waiting for? Go read her blog!

They just took him back & updates

UPDATE: 1:21PM 

Everything is fine we are in our room and hanging out with Anton. He seems to be pretty happy and his talking to Jason as I type this. 

UPDATE: 10:20AM
The surgery is FINISHED!!!! Everything went great. Patrice and I went into the OR after surgery to re-bandage him now that we are back in the waiting room they will extubate him. Thank you for loving our boy God is so so faithful!!! 


-------
UPDATE: 9:30AM
The OR just called and they just now started surgery. They were able to intubate him without any problems. The surgery should take one to two hours.


------
Here is what Patrice posted on FB: 
They took Anton back about 20 minutes ago. Surgery will take 1-2 hours. They would not let Vanessa go back for this part but will let us both go back to rebandage him at the end. We are confident that he is in great and EB experienced hands. Thank you for your continued prayers.


And here is what I put on FB: 
They just took him back to surgery and they have operated on EB kids before in fact Anton is the second this week. I know they know what they are doing but it was so hard to let them take him. God is sovereign and faithful and amazing and we continue to praise.


I will keep y'all updated as I can.

Anton's surgery is in one hour .

(thanks Patrice for this awesome picture)

My sweet baby boy will be having his G-Tube surgery in one hour. Please be praying for Anton and all of the staff that will be working on him. Patrice wrote detailed blog if you want to know specific ways you can pray click HERE.

Surgery is scheduled.

Anton was pretty fussy the first two days we were here, now he is pretty content. He plays with his toys and sleeps in his stroller but oh man when Daddy came in today he LIT up. He was so excited to see Jason he started yelling and pointing at him until Jason picked him up. I only thought he loved his Mommy but I am telling you he LOVES his Daddy! It was so cute to watch them playing together today!

Anton being silly.

Playing with his puppet.

Making animal noises.

snuggle fest with Daddy.

Sleeping in his stroller all snuggled up with his new love, the cow blanket from Courtney and Anita!

Courtney worked VERY hard to win him over. 

To say Courtney and Anita spoiled Anton is a grave understatement. This boy was spoiled rotten by them :)They bought him blankets, clothes, and every toy in Target. They are so sweet and have helped us out so much! They got everything I needed, have brought me food, and have watched Anton so I could have a little break to go get food. I will say it wasn't easy leaving him even if it was only a few minutes but I was so thankful to get to have just a little break and know he was in amazing hands.

Courtney and Anita are so much fun and they know how to entertain a kids for HOURS.

 I have so much to learn from them. 

 Anton is looking in the big bag of  toys from Target to see what's next ha

 Courtney and her Mom had an early flight this morning so they will be headed back home shortly. It was such a HUGE blessing to have them here. I learned so much from them in such a short amount of time and it helped give me the confidence to know I can do this, I am the Mom, and NOTHING happens at the hospital without me saying it's okay!

Sweet snuggle time with Mama.

Surgery is scheduled for 8am Monday morning. We have seen the surgeon several different times and he has done surgery on EB kids before. We met with his anesthesiologist yesterday and he is amazing! Everything I was going to ask him about and everything I was going to make sure he knew he said them all before I could. They will cut the tape off of all the leads and use mepilex, they have meditape already (EB safe tape), he knew he couldn't tape Anton's eyes in surgery and he asked tons of questions about how much Anton could open his mouth. They will have him on a sheep skin blanket during surgery to make sure it's super soft and he will have all of his bandages on except for where they will operate. They already have an EB kit in the OR because they do have several EB kids that come to Cook's for surgery.

I felt so much better after talking to them both. Please be praying for our sweet boy no parent wants their child to have to have surgery but we know this is whats best for him and he wouldn't be able to eat without having it done. 

None of this surprised God he is sovereign over all things to Him be the glory FOREVER! 

The heart of a man plans his way,  but the LORD establishes his steps. Proverbs 16:9

We love you all! 

Anton was eating fine in Russia what happened?

I wanted to clear up a few things. The question that has been asked the most since Anton was admitted to the hospital was "he was eating fine is Russia what happened?" I totally understand that question and I want y'all to feel free to ask any questions you may have.

Anton was eating fine in the hospital and really he was eating okay once we brought him home. The reason we had the swallow study done is he coughs a lot when he eats and gags a lot but he also did this in Russia.

During the swallow study what they do is give him a different things to eat and drink that have something (radio active I guess) that will show up on x-ray. Then they put it in a few different things for him to drink and eat to see where it is going once he drinks and eats it. They do a live x-ray the whole time he is eating and drinking to see where it goes. They started with a super thin liquid like water and it aspirated into his lungs almost every time he drank it, then they thickened it up a little (like chocolate milk) and tried that and he still aspirated a few times, then they made it thicker (like honey) and he still aspirated into his lungs then they tried baby food and that even aspirated. He FOR SURE was aspirating every time he was eating in Russia and the way we know is he had Pneumonia several times while he was there and aspirating causes Pneumonia.

 It is only by the grace of God we caught it because you CAN die from aspiration. He can't eat anything else by mouth until he has physical therapy to learn how to close his airway when he is eating. Getting a G-Tube is a really good thing for his EB too because it will allow us to get all the calories in him that he needs to heal.

None if this is bad, Anton is NOT sick they just have to leave him in the hospital because we have no way of feeding him without the G-Tube.

 Hope that helps clear things up. Love you all!