June 22

Another big day for my little big man. We are going to try to take him off of the Vapotherm to see how he does, I cannot wait to see his sweet chunky face without the cannula. He just keeps getting cuter! They mentioned he might need a little low flow oxygen, but the tube won't be so big and heavy, it will be easier to move him about. He will still have his feeding tube through his nose as well, thankfully that is nice and small, but I can still tell it drives him crazy.

We are scheduling OT, speech, and lactation, to help...with everything. Feeding, positioning, possible bottle feeding, etc. 

Father's Day pics

The nurse saw me attempting to trace Everett 's hand under his Father's Day card. She helped make this for Andre too!

Some pictures of the Fam up north on Father's Day! 

We got Everett off of the vapotherm at 10:30. Here is a picture of my handsome man with only one tube left, I snuck two pictures before they put tape back on his sweet little face.

Look at me standing and holding him, it is so easy to get him from his crib and hold him without the big tubing! My heart is full!

He was really upset, as anyone would be having the tape pulled from his face. Thankfully this nurse did it as gentle as possible. His oxygen is at 99% right now, all on his own! His respiratory rate has been a bit higher when he is sleeping and drops when he is awake. 

Deb from lactation came over to see us, I have been seeing her regularly. She is wonderful. We have decided to not push him with feeding today since he has had enough change without the Vapotherm.  His respiratory rate needs to be below a 70 in order to practice feeding from me or a bottle so he doesn't have risk of aspirating. 

As anxious as I am to get him eating, I know I need to be more patient and move at his pace. We will just hope that his lungs do not get too tired on his own and he can stay off of Vapotherm, or any oxygen help. Melissa, the nurse practitioner said that his x-ray looked fine, still a little cloudy in the upper right lung but that the x-ray usually lags a few days behind actual results. Although Everett looks so much healthier, he probably still isn't feeling 100%.

Everett passed his hearing test!! He will need one every six months since down syndrome babies tend to have more fluid in their ears. We will want to make sure that he can hear well to help develop his speech and language.

Another big assessment happen today. OT came and did lots of work with Everett. She said that he has great muscle tone, good reflexes, makes great eye contact, holds his head well, and all sorts of good things! She wasn't referring to a baby with down syndrome, she was comparing him to an average baby. She put him on his belly and placed him on his face on purpose, he had no trouble picking his head up and getting into a comfortable position where he could breathe. He continued to pick up his head just for fun. I keep trying to tell everybody how strong he is, all I get back is low muscle tone, low muscle tone, low muscle tone.  I know that little man has great strength, even when he is still not feeling 100 percent!  She also said that he sits quiet and awake, very alert, which is a good sign for learning. She said he is already learned that he can cry, and stop when someone is near him because his needs will be met. She was impressed with this learned behavior. I can't wait to see him at his very best, he is amazing!! You go Tiger!! 

I am going to wait to continue to try to feed him in anyway shape or form until tomorrow when I meet with his speech pathologist. Daddy went straight there after work, to be there for his 5 PM feeding. 

Can you guess how many times I kissed that available chunky cheek today? I'm surprised I didn't give him a hickey from gobbling him up so much!

Dada came at 5 for his feed. Gave him a million kisses on his big chunky cheek. We got clara to bed and I came back for his 8 o'clock feed. The nurse was busy with another baby so she left me a bottle. I wasn't going to try that just yet, but I could tell he was hungry. He slowly drank 5 mL for me. I think I am more nervous than he is so we went nice and slow.