Saturday, November 29, 2008

Baby Ethan Update - 11/28/08

Hi all!
So we got our family photos back today. They look great!
Here is the link:
Click on "Ethan & Riley - nilmdts"
Password is: "Murray" (it is case sensitive)
These pictures are open to download if you want. We own the copyright on them so you all can do anything you want with them. I hope you all enjoy!
So on with the update!
As of a couple days ago he finished his lipids, finished his hyper-al, and the IV has been capped off but will stay in until we can make sure he is gaining weight on his own. We expect to take his IV out in about another day or two. We have also FINALLY gotten him to full feeds and are now able to give him small amounts of food in a bottle as long as he is willing to take it.
Our Occupational Therapist (OT) has requested that we bring in banana, sweet potatoes, and other stage 1 baby foods to try and feed him that as well. We are continuing with his enzymes, however it is the enzymes that Ethan does not like very much; we are using them as long as the pharmacy cannot get the "beads" enzymes in...these will be the enzymes he will use until smart people can develop a better kind of enzyme.
Because we are done with his Hyper-Al we are starting him on some multivitamins, an antacid, table salt, and iron. These are all the things that we were giving him in his Hyper-Al that will need to continue being given for some time. His multivitamins, and salt will probably need to be given as a dietry supplament for the rest of his life. We are not sure about the antacid though.
We are going to start him on Bolus Feedings ("a larger amount of food given through his G-Tube over a shorter period of time. Much like giving a regular child a full bottle in one sitting") sometime in the near future. And we are just waiting on a home healthcare agency to come over and begin teaching us how to use the machines and equipment that Little Man will need once he does come home. However, we still don't know when home is...they're just wanting to get us a head start.
As of today he is still 22.5" long and weighs 14 lbs 10 oz. Yeah, our little man is just a little bit bigger. Tia also says that he has a diaper rash becuase up until just recently he has had a virgin butt! Sounds kinda bad, but that is what she'll need to ask her!
He has become an avid smiler, and talker (we actually caught him and his roommate, Baby R, cooing back and forth at each other), and he holds his head up all by himself very well. For being hospitalized for so long he is developmentally behind by about a month in a half or so. He is catching up rather quickly though. To help him catch up even faster, once he comes home, we will have many visits from the OT's and the DT's (developmental therapists), the ST's (speech therapists) and all kinds of other friends.
Also, the hospital is STILL giving us the run-around about his circumcision. For some unknown reason, nobody over there is willing to help us figure out how we need to go about getting this done now considering there are not many doctors left that are comfortable enough with doing the procedure. We can possibly have it done with a Pediatric Urologist, but we don't even know if she will do it or not. If for some reason we do need another procedure done, we will have a different surgeon come do the procedure who we know is willing to do the circ. But for now, it is all up in the air, and the last time we asked the hospital about it they became extremely outraged at Tia for asking and basically told her to stop! This is the Neonatologists we are speaking about. But we get the same resistance from all the nurses as well. We are basically lost at this point!
So it would be safe to say that when this is all over, we will all be very happy not to have to visit Deaconess anymore!
So that is pretty much it for now. When something new happens, we will let you know!
Don't forget to check out the pictures. Take care for now!
- Kip, Tia, Riley, and Baby E -


Anonymous said...

just wanted to drop by and say hi. i have been following your story. your family pictures are beautiful. your boys look great. little ethan looks amazing. it is great to see that he has made such strides and i know he will continue to make many accomplishments. i have three children and my nine year old son has cf. keep taking it day by day.


The Liberto Family said...

I have been reading your blog ever since you became a follwer of my family blog.
I want you to know that my husband and I are praying for little Ethan and the rest of your family. I don't know what you are going through, but it sounds like God is watching over Ethan. I look forward to reading more! If you have any questions about CF please let me know. It's so amazing how many people out there have it. We didn't know what CF was.


Carolyn said...

Hello, I found your blog and wanted to say we went through the blockage with our son wcf who is now 9 almost 10 years old. Reading your story brought me right back to those days. I am sorry you are having to go through this but he will get out of the hospital and have a wonderful childhood!! I remember the doctor telling us we would probably be home 2 to 4 weeks after surgery and it was almost 4 months. It felt like it was never going to end but we got out and my son is doing great! I will send prayers your way! Your family is beautiful!!