1 month old today :)
Today is one of many days we hoped to make it to but were not guaranteed. Ameir is one month old. Against all odds he is LIVING and doing GREAT. Last Friday Ameir came home. A little Trisomy 18 info, boys do not usually do as good as girls with Trisomy 18, a lot of babies don't even survive birth, of the few that do survive birth many do not make it home from the hospital. Today makes day 6 at home. I have taken him to several appointments and we have several people come to the house to work with Ameir so I don't have much time to update my blog. As we get into a routine and the visits let up a little I will try to update more often.
Ameir is happy and smiles often. He is adjusting well to our home schedule. He is starting to wake up at his feeding time rather than my alarm waking me, him crying is more pleasant than my alarm clock going off.
What are my goals for my baby, I want him to live a long and meaningful life. I want him to continue to bring joy to me and my family. I want him to be respected and treated like any other child. I want him to teach the medical community that children with Trisomy 18 can live and thrive!
Monday at the doctor Ameir weighed 4 pounds 15 ounces, on the home nurse scale he weighs 4 pounds 12.5 pounds either way this is a pound over his birth weight (there is a discrepancy in that too I was told 3 pounds 15 ounces but U of M said records from Covenant say 3 pounds 12 ounces).
Adrianna has been a great helper and I don't know what I will do when she goes back to school in a couple weeks.
Here are some pictures from the past week.
Getting ready to go home.
Daddy holding Ameir for the first time.
Ready to go.
Car ride home.
Just getting home.
Bouncer for the first time.
Bassinet with music and mobile, he loves it :)
3am feeding time sleeping in his bassinet.
Good morning little man, first morning at home. Ameir had a great night, the alarm did not go off at all.
Adrianna picked out little monsters for his outfit.
Some big sister snuggles.
Bad mommy fell asleep holding Ameir. (Lack of sleep setting in but totally worth it)
Swing for the first time.
We went for a walk to IGA for some milk. Put Ameir in the stroller and he slept the whole trip. He looks so tiny in there.
Feeding Ameir on the couch.
I'm going to get that bear!
Hanging out in my boppy pillow.
I'm still going to get that bear!
Amy,
ReplyDeleteI've just discovered your blog and read through your story; you are an amazing woman and God bless you for bringing life to this child. This is not the first I've heard of Trisomy 18; I actually learned a lot about it a few years ago through a mother's blog, although her son's prognosis was not good. His parents amazed me with their courage, strength and love in all the days and weeks before their son arrived, and all the little but cherished time after. You remind me of them quite a bit.
Ameir is GORGEOUS. He is as normal as any other "normal" baby - well, scratch that - he is more than normal, he is EXTRAORDINARY! He didn't just hang out in-utero, biding his time being lazy and just "baking" until his birth day like all other babies, no! He worked HARD to make sure that, despite his diagnosis - something he couldn't change - all his organs were healthy and perfect. He worked extra hard on his breathing and his "swimming", so that he'd be prepared to beat the odds - and he already has! By miles and miles! He truly is perfect. Yes, his arms are shorter than they should be, and one foot wasn't quite straight, but beyond that, you can't tell he has such a diagnosis! And I mean that. If I didn't KNOW he has Trisomy 18, I would NOT KNOW by looking at his face. He is BEAUTIFUL! I found myself smiling at many of his pictures, often letting out an "aww!", especially with his cute facial expressions and how he tries so desperately to reach those toys hanging above him (he's got tenacity, that boy!). I also think this adds to his normal brain scan, PROVING that he is a smart, smart boy! Not a lot of preemies can do that so soon - or at least *I* haven't seen them do that (and I've been around many). I love the things you say you want for him; I want those too, and like you, I truly believe he will reach and surpass all that you want, wish and pray for.
God definitely put extra time into Ameir's creation, and I know He has a fantastic plan for this boy's life. God is good all of the time, in all ways.
"'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE.'" (Jeremiah 29:11)
I look forward to more updates, and I look forward to watching Ameir grow and reach new milestones. Again: GORGEOUS! :0) And your daughter? She is such a beautiful girl! She has the prettiest hair and gorgeous features. What a great big sister and helper she is. Ameir is lucky to have an amazing big sister who is definitely going to protect him to the limits!
Congratulations on your new bundle of love!
God Bless,
Mel
P.S. A little about me: I am 25, live near Seattle, WA, have been married for 4.5yrs, and I have two children. Samantha is 3, and Ethan "Boo" is 2, and they are a bundle of trouble!
ETA: I forgot this part, which comes after "yes, his arms are shorter than they should be...":
Delete"Should be" is not exactly the correct term, at least in God's eyes. Maybe Ameir's arms are shorter than what doctors, history and the world says they "should be", and that his leg isn't "quite right", but I say this: We are ALL created in His image. Each and every one of us is how God intended us to be. The reasoning is beyond us, and while we do ask "why", we should instead believe and have faith; believe that God loves us, and faith in the plans that He has laid forth. God MADE Ameir how he was supposed to be. He didn't make any mistakes, He didn't nod off while crafting his beautiful arms; God knows Ameir, and only He knows Ameir's journey. So even though humans say he isn't what he should be, it doesn't matter - God made Ameir as he was SUPPOSED to be, and that is exactly what he SHOULD BE. Humans are fallible, humans are imperfect, and humans are judgmental. God is perfect, God is loving, and GOD DOESN'T MAKE MISTAKES.
That's all. :0)