Thursday, October 7, 2010
I am pleased to write that Jacob continues to thrive since his Glenn. He is now 17 pounds and 25.5" long. His oxygen levels have really improved. He is always around mid 80's. He even stayed at 91 for a while the other night. It seems like his lungs just needed time to heal.
The biggest change is that he is no longer on his diuretics and he no longer gets overnight feeds.
Jake is down to 4 medications (Aspirin, Captopril, Prevacid and Bethanichol). He will always be on Aspirin and Captopril (This will change to Enapril when he is older). He will be on Bethanichol and prevacid as long as he needs them.
Jake no longer needs his overnight feeds! One less wire attached to him at night. He is up to 160mls 5 times a day. He takes about 70mls by bottle before he gets tired of it and I have to put the rest through his g-tube. Jake also LOVES baby food. He likes the vegetables the best just like his big brother did. I wish his big brother still liked them lol.
The next step is to condense his feeds so he gets more volume less times a day. So far he is doing very well every time we increase his feeds. He does get a lot of air in his belly when drinking from a bottle so I have had to vent him a few times a day lately but he has been pretty good overall.
I also switched his g-tube out the other day and he did not even cry. I have had to put it back in when it was yanked out but never took it out on purpose to put a new one in. Food was not going through as well as it should so I thought it may have been getting clogged up. He did not even wiggle around a lot which was good since I was alone and did not have an extra pair of hands. I just talked to him and he smiled away and I popped the new one in (Covered in KY Jelly so it would not hurt). Amazing how things that once would have made you cringe become so normal to you. I have faced so much that I never imagined I would face in my life. I think I could be a nurse at this point lol. I love taking care of Jake though and would not change it for the world.
MEDICAL TO NORMAL
The best thing is that Jake is our life is becoming more and more stable and normal. We are seeing less medications, less machines, less doctors appointments and more smiles! This makes me so happy for my boys. Instead of crying I wake up hearing Jake talking in his crib and laughing. He has started this new laugh which sounds like a cough. Its adorable. Scared me at first but now that I know it, its adorable. He has this smile that just melts your heart. He squints his eyes and sticks out his tongue. So cute. Aidan wakes up every morning and tells me he wants to see "Jake's Friendly Face". He is such a GREAT big brother. He hugs Jake, talks to him, lets him play with his toys. It means so much to me to see them bond. We are just so happy to be home together.
Jake is rolling from side to side all of the time. He has rolled onto his belly a few times on his own but usually I have to bush on his leg a little bit and he rolls right over. He is still not a fan of tummy time but he is getting more used to it. He can hold his head up with his arms so he can see everyone.
He puts EVERYTHING in his mouth. I have to keep onesies on him or he grabs the gauze around his button and tries to stick it in his mouth. He also tries to rip the g-tube button out so I have to keep that covered. Jake has started sucking his thumb. I have to admit its cute but I keep telling him that I can take away a binki, can't take away a thumb so he really needs to stop that lol. Hey this kid has earned some thumb sucking.
Jake is also sitting up much better on his own. He still needs some help as he topples over a lot (I don't let him fall, no worries) but he is learning.
Overall he is doing better than I ever imagined.
Jake and Aidan both had their flu shots this week. Aidan wanted to go first so Jake would not be afraid. He cried and was more upset about crying than the actual shot. He was so sweet, he looked at me and said "I don't like that". Then he watched as Jake got his. Jake cried for a second but I dipped his pacifier in apple jelly and he was good to go. Neither of my kids had any fevers or adverse effects and were good to go by the time we left the office.
I am still trying to figure out Jake's RSV vaccination. I am trying to get our doctors office to order it. Jake HAS to have it monthly through March. Dr. Heydarian gave me a form that they can mail in so the insurance will pay for it first. I was going to have home nursing come but they are out of network. These shots are $1500/shot so many people don't want to order them. Our insurance covers it but I am just having a hard time getting someone to give it to him. Pray I get this worked out soon since he needs his first one in November.
THE REAL WORLD
We are still not bringing Jake into the public until after flu season. We take him from walks and our close friends and family can come visit. They all know that they must be prepared to use TONS of hand sanitizer lol. I just don't see the need to take him to stores and restaurants. Honestly he would probably cry the whole time so it would not be fun for us anyway. I just think its to risky during flu season. When its over he will be one year old and stronger. I don't know if I will ever be totally comfortable having him around large crowds but I will feel much better when he is older and its not flu season.
So for now if you want to see us it will have to be at our house and you have to be 100% healthy. Jake has been through so much and we owe it to him to protect him as much as we can. On the flip side... when he is older I will have to relax more because I don't want him to fear his body or his life. I will just have to trust that he will make the right choices and be there to ground him if he doesn't lol. I guess I have some time before I have to worry about all of that.
Until then I am LOVING and ENJOYING every moment with all of my boys!
Now for the fun part... PICTURES!