... that is how long I get to write. This is one of the reasons I haven't written much in the last four weeks. As I type, I have my brand-new baby boy strapped to my front in a baby bjorn- he's napping. And Vivia my 2 year old is watching Curious George while eating her dinner that consists of chicken nuggets and applesauce and goldfish. Yummmmm. I have a lasagna in the oven, but of course, it won't be ready for an hour at least- and she's hungry NOWWW>
I feel like since the day I got home from the hospital, I have hit the ground running and haven't been able to stop since.
So, back to my new life:
1. 2 kids
2. Lack of sleep
3. 3 dirty diapers a night
4. Sleeping in different beds b/c my husband needs his sleep for work and school
5. D's (ohhhh yeah!) lol!
6. Not getting out b/c it's too hard to get them both ready
7. Cleaning out my garage to make more room IN the house because my mom is moving in for awhile
8. Trying to stay hydrated
9. Frumpy Nursing wear
10. Wondering if my tummy will ever go back to its original size
11. Or if I will ever be able to wear a 2-piece again
12. Waking up in cold sweats- drenched
and I could go on and on and on...
The last four weeks have been one big blur!
We are definitely settling into our new life as we know it. And we are relieved to know that our son will live a FULL life and does not have anything major wrong.
The first few days of his life were full of tests and questions and information overload!
Thanks all of you for your prayers and thoughts, the worst is over. God is good.
Things are not as bad as they were "preparing" us for.
The worst of it is that Rio will only have sight in his left eye, until science or God change that.
They told us all the wost case scenarios- which included cancer and tumors, and a malformed brain etc etc. None of which were the case. And the tests he had on Monday, the ones we were praying and fasting for... showed us that. Even though Gabe and I knew he didn't have it!
He has a little tiny cleft in his lip (barely noticeable). And his left eye has micropthalmia. A fancy word that basically means 'little eye'. It is 50% smaller than the right eye and has a lot of scar tissue and a small cataract in it. The doc did not recommend surgery on the eye (thank God) because he said that there really is not enough sight in that eye to try and develop it. That it would be better for him at this age to just get on with his left eye developing. At this young age, his brain will basically teach his eye to compensate for the lack of the other, and his vision will be better that way. More so than someone who has always had sight in both eyes and then was to lose it.
Look at the photos of him on my blog and you will see that he does not really open it all that much. His prognosis will include wearing a hard contact lens in that eye in order for his skull to develop symmetrically. And they say that he will live a completely normal, full life- and the prosthesis (contact) will be barely noticeable by the time he is 5 or so.
Blah blah blah...
They don't know what causes it. It is connected to the little cleft in his lip because they are both considered "midline". So, there was some kind of accident in my womb at the time that that part of him was developing so it didn't completely fuse and form. That is kind of how the doc described it. Since it was midline, that is why all the tests and MRI's that he had to have. To make sure that other "midline" organs and parts did develop correctly. Which were all normal! And his genetics tests were completely normal too! Which means it is not connected to any type of "syndrome" that might come back and cause problems in the future.
As we learn more, I will update. Until then, I have found a cool online support group for people affected by PHPV, and am learning about it as much as I can. It really could be so much worse!
I am so blessed by him- He is so precious. And I know that he will leave an influential mark on this world! And all of this will be a part of his testimony and God will get all the glory!!! Gabriel and I are becoming more used to our "normal". And we are over the shock of it, and the disappointment, and we are ready to face it and make it a part of our daily lives. He is positively perfect just the way he is- and no one's going to be able to convince him otherwise- ir tell him there is something he can't do!
:)
3 comments:
Hi,
This is Amy. I am friends with Kristie Harris (roomates in college), and as I was reading your blog about Rio, I just wanted to say I can empathize with all the concerns you've had with tests, etc. being done for Rio. I'm thankful that it has turned out to be something you can deal with, and that shouldn't affect his quality or length of life at all. Our daughter had many birth defects, which unfortunately did result in her being taken from us early on in her life, but we went through all you've been doing to see if there was anything we could or should be doing for her as well. It was really hard to wait, and some of the answers we got were so difficult, but we had to "adjust to a new normal," a new way of thinking about her time with us. It's a good place to be, and so much Peace from the LORD, and we wouldn't have wanted to be anywhere but accepting His plan, as difficult as it was. I'm thankful that you've come to that place, and know that although God may choose not to heal your son, He is still GOOD, and wants to accomplish HIS purpose in Rio's life, not by removing the hardship, but perhaps by allowing it!! Just wanted to encourage you in that, and to lend my support in your decision to trust God in this way.
Sincerely, Amy Lyttle
Hi,
Amy again. I just wanted to say that as hard as this time is, with sleeping in a different bed from your husband, and changing diapers, fighting to stay awake, feeling frumpy, etc., try to savor the time that you can provide for Rio's needs. Only YOU can do that, and that is a special thing God has asked of you, Rio's mommy. Only you can care for him the way he needs right now. Just a thought...and a little perspective. (Trust me, I've been there...there is nothing like nursing your child in the middle of the night, and then having them throw it all up all over you, your bed, your hair, etc.) It's a season, and it will pass.
Freedom...thanks for bring us up-to-speed on baby Rio. I've been wondering what's been happening and am relieved to know what you and the family have been facing for the past month. I thank God for the peace that you and Gabe have already. it's a testament to your foundation, which obviously, can't be swayed.
Keep up the details and the pictures. Your family is beau.ti.ful.
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