Tuesday, September 27, 2011

Just another hurdle..

We knew from the start even before we got pregnant that our journey wasn't going to be easy, but then again who's is ya know.. But I think it gets to me more when things seem to be going good, bam, you gotta face soemthing else...
Mackenzie had another eye exam yesterday and not so bad news but then not very good news either. Her eyes have gotten worse but she has not reach stage 3 yet (and remember stage 3 is not where we want to be), but she is at severe posterior zone stage 2. (still stage 2 but a lot worse) . The doctor said that in his experience, he is heading to stage 3, the only thing is, when will that be. He also said though, that overall she looks really great to still be young as most babies he sees a severe posterior zone stage 2, the baby is a lot worse off as far as breathing etc.  She could stage at stage 2 for a while and there is a chance she can regress but not likely at the rate she progressed. So they discussed treatment options. We can't do anything yet but they wanted to go ahead and have us start weighing our options as there are such pro and cons to each.
Option 1:  The eye doctor really believes that she is a good candidate for what was a clinicial research and only done on 150 babies, and that's called Avastin. Pretty much, it will be a shot into her eyes which it's like a cancer drug. She wont have to be put on the ventilator and she will just get a mild sedation so that she doesn't move while they are doing. The procedure will only take about 30 mins or so.  In the clinicial research it had a very high success rate. And with this procedure, from what i understood, it's kind of a one treatment kind of thing. We just have to keep with follow ups just to make sure things keep progressing the way they need to be.  The only downfall to this, we dont know what the long term affect is going to be. It hasnt been around long enough to see what affects will be say 10 years down the road.
Option 2: The laser treatment. This will be pretty much where they go in and laser off the bad part. This has been the most common form of treatment, well actually the only form of treatment pretty much for ROP. If she was to go this route, she would have to go back on the ventilator for how ever long it takes her. They are familiar with long term affects with this route and there is still a chance even with this, she can be nearsided etc, but there is also a chance it can fix all.  But there's a chance that she would need a nother treatment down the road as well depending on how much is removed.  This way is less invasive.

These are pretty much our options in a nutshell. We do nothing, she will pretty much go blind. (and please understand, that this is just a summary in my own words, please do not take this for any research or anything, google to get all the correct and definite terminology, it's a lot so i just like to summarize in my own words)  The biggest thing which each one though is that after either one, it's not over. Mackenzie will have to follow up for how ever long it takes which is fine with me. If i have to take her everyday then so be it to give her the quality to see properly , i will live at the eye doctors office if i had to.  But that is what is kind of sad because the eye doctor kept stressing follow up appts because apparently a good bit of parents dont do follow ups and then the ROP comes back, or the child goes blind. In other cases that one treatment is all thtat is needed bu really how can you not take your child back to help better their life which just a simple visit. I just dont understand. But for now for us, we just wait. She has another exam on friday and we are just going to keep going from the results of each exam. Until she hits stage 3, we can't do anything yet.

Although we got that bad news yesterday, we got good news at weigh in. Our little pumpkin now weighs in at 2lbs 14 ozs., or 1310 grams.  2 more oz's to go..They changed her feeds again yesterday which was quick but ok. She now gets feed for one hour and then she is off for 2 hours. She was at 32 cc's each hour but with the PDA the doctor felt that , that might be too much fluid at one time so to proceed with a little caution she bumped her down to 25cc's each hour. So far so good. Her belly is looking a little more full which we handle that with caution, but I knew she pooped this morning when i left so hopefully that took some of the pressure off of her belly.. She was too cute this morning as she is each morning but she also advance to the "purple" pacifier. They have 3 types, clear, purple, and green.  The clear one is tiny.. Its like preemie like. The purple one is is a little bit bigger and has more of a round sucking point. I think she liked it because it also gave her something to hold on to and boy did she. Even when she wasn't sucking on it, she had it in her hand and didnt want to let go. The green one is bigger and is like the more normal size you see. One day..  But we are happy she likes the pacifier though as it is teaching her how to suck and breathe at the same time. Something she has to do to maintain the bottle which we are hoping here soon to try at least by next week.

So although we techincially have two hurdles to overcome, the ROP and the bottle, we are just going to face it like we have been, one hour at a time..


  1. July,
    You and mackenzie are in my thoughts and prayers everyday. It's so hard to believe just a year ago I was in your shoes. My little girl kiley had stage 3 rop and had surgery on Nov 11 and she is doing great. I would love to talk to you and you can read my story at caringbridge.org/visit/kileygrace.

  2. kileysmom-i would love to talk with you. i emailed at the last email address you gave me. not sure if you got it though. my email is tlab99@yahoo.com. hope you get this comment but ill blog you a comment as well.. thanks.