Tuesday, March 30, 2010

Ten Weeks

Dearest Lily,

Just thinking today about the miracle you are..so fragile and tiny, but so strong. You're a fighter, baby. You beat the odds- 43% of babies with Down syndrome in the womb don't make it to term. 92 % of babies diagnosed with Down syndrome in the womb are terminated. 50% of all babies with Down syndrome have a serious heart defect... You are a miracle. You are a blessing. You are strong.

In your ten weeks of life you've had multiple blood draws, oxygen tubes, thyroid screenings, chromosomal tests, a blood transfusion/exchange procedure, 3 echocardiagrams, a feeding tube, breathing treatments...but you rarely cry. You still smile when you're sick, you gaze unblinkingly into our eyes as we tell you how much we love you, and with those beautiful blue eyes you tell us I love you too.

You are pure.

Having you has changed my heart forever. You've made me value life- the miracle, the gift, the joy of LIFE. I'll never be the same.

You are beautiful.

Daddy and I are so in love with you. In ten short weeks you have wrapped us around your tiny little finger- that bent little finger that tells us you are different, because you need us more. And that's not a bad thing. In fact, that is a fabulous thing. You'll never outgrow us.

You are unique.

Dearest Lily, I'll spend the rest of my life loving you and making sure you know how very loved, how very wanted you are. If I had to change you- it would be for you and not for me. Because I love who you are, I love who God made you. And God doesn't make mistakes.

Three years ago, after we had your brother Jackson, I told Daddy I wanted one more girl. I told him I had a name I loved. Daddy said he already had a name too. I said okay, but my name was what we were going to name our next girl. Daddy laughed and told me his name- Lily. And that was the name I was going to tell him. We knew from that day that some day we were going to have a baby girl and name her Lily.

All along, God was waiting to send us you.

You are loved.

Always yours,

Mama oxox

Monday, March 29, 2010

Dearest Lily,

What a weekend! Friday your little virus turned into a big virus...you were having such a hard time breathing after a long night of coughing and throwing up..so Mommy took you to urgent care. You were coughing and turning blue, and your tiny chest was retracting so much with each breath. The doctor took one look at you and said we needed to go to ER at the hospital. Since she didn't want to take a chance with your breathing on the way there, she sent us in an ambulance. Poor Kenzie was sitting in the waiting room and didn't know we had been transported..Daddy was in Georgia for several days, Josiah was at work, the kids were at home, alone..what a nightmare!!

When we finally got to the hospital, the doctor there looked you over and said you probably had RSV and needed to be admitted. You and Mommy spent three long days isolated in a room in the pediatric ward...anyone coming in to see us had to wear a mask and gown, as we were a roomful of RSV germs . You had several breathing treatments and were hooked up to oxygen the whole time. Dr. Carr came to see you 3 times, and we basically just made sure you were breathing okay- RSV is something that just has to run its course.

I have never heard you cry so much- talk about heartbreaking! But you were a trooper, and you still gave Mommy your morning smiles:)

The only nice thing about the whole experience was that I felt like I got the hospital "alone time" with you that I never got when you were born. I really missed that- the quiet night times when it's just me and my baby in a bed together...in fact you still look like a newborn! So I pretended:) All the nurses fell in love with you, and everybody kept saying what a beautiful little doll you are.

Today you are home and breathing much better. We got a breathing machine to use as needed. Kenzie helped Mommy give you a breathing treatment this morning, and you have been doing great since then. I am so thankful you got better so quickly- you seem too tiny to be that sick.

Time to get my grocery list ready for the weekly shopping- life doesn't slow down, even with sick babies!

Love always,

Mama oxox

Thursday, March 25, 2010

Dearest Lily,

You have your first little virus...I hate it:( You are congested and coughing, and it makes me so sad when you wake up crying and sputtering. We tried so hard to keep your sick siblings away from you all last week. Noah and Jackson were the sickest, and it was no small task trying to convince them to hold off on kissing you until they were completely better. Obviously we didn't succeed, because yesterday you sneezed up grose green stuff, and today you just want to sleep, sleep, sleep.

Daddy left for Georgia at 3:30 this morning...so Mommy was up with you for an hour afterwards, walking around and shhh-shhh-ing you while you coughed and gagged and cried. I found out you can cry for reals. All this time we thought you were incapable of real baby cries- you only ever "squeal" (according to Abbi.) It was so sad, I decided the squeals are just fine with me. Your crying makes me cry!!

Every time I go back and read my old posts here, I realise I need to finish your birth story..I sort of left it hanging. I just wanted time to write it all down and not leave anything out. And it is hard for me to revisit all the emotions. I want to put it down in writing so I don't forget it...but it's going to take some time, which is really one of most valuable commodities at this point in life.

I feel like I'm moving from one mini-crisis to the next these days. Homeschooling woes, diapers spilling over, dogs tracking muddy footprints through the living room, missing belts, missing humidifier parts, sick and crying toddlers, appointments, appointments, and more appointments to schedule, broken eye glasses, sibling rivalry...beautiful chaos here, but it doesn't really allow for much blog time. My poor neglected "Rice Room" bloggy has probably forgotten me by now. But I keep reminding myself that life with a newborn goes by too quickly, so I'm trying to soak in all your new-ness, and not let the stuff that will always be here... keep me from enjoying you.

Like the never-ending laundry... and a fridgeful of mystery leftovers in multiple tupperware containers...and three months worth of untouched Cocoa Daisy scrapbooking kits that are calling my name...

Enough venting! I'm ignoring it all.

Daddy is gone for three days, and we just might stay in our jammies til he gets back!

I love you Lilybug.


Mama oxox

Monday, March 22, 2010

9 Weeks

Dearest Lily,

You are 9 weeks old!! So hard to believe- seems a million lifetimes ago that I was wondering who you were, waiting for you to arrive. You are 6 pounds 11 ounces and 20 inches long now. What a little peanut! You roll from back to tummy and tummy to back..you smile and COO all the time..you stare at us for the longest time, and you love to interact with us with your little voice. You are nursing so well, you eat every 2-3 hours, and you sleep for 4 hours at a time at night. You are HAPPY and content, and the easiest baby we've ever had. To say we are all in love with you is a total understatement. Daddy and I fight over who gets to put you to sleep on our chest at night- your favorite way to drift into dreamland. Your siblings are still all smitten with you- Caleb lately is the one who begs to hold you the most.

Your thyroid tests came back normal today- thank God! They were abnormal when they were done at Doernbechers. We knew they couldn't be right, as they were off in both directions, too high or too low.

I have been reading, reading, reading to educate myself on the challenges that lie waiting for us. Roadmap to Holland, by Jennifer Graf Groenberg was excellent. Babies With Down Syndrome is a guide for new parents- lots of practical info. Gifts- a collection of essays by mother of babies with Down syndrome was so sweet, I related to so much of the emotion other mommies felt.

Which brings me to a point about words...Words truly are powerful, and while I shun a lot of the silly "political correctness" of the day- so much is just oversensitivity I think- I really do feel that the way we "label" people matters. Before I had you, I never thought twice about saying a "Downs baby" or a "Down syndrome child"...it just seemed the natural way to say things. Now that I'm your mommy, I have switched to saying "Babies with Down syndrome" or "Children with Downs"...The point is, you are a BABY first. Down syndrome is a condition you have- it does not define you. Just as I wouldn't say "cleft palate babies" or "an ADHD child", I wouldn't put the diagnosis first. It's not who they are- it's something that affects them. I'm not going to get my feelings hurt when people refer to you as "a Downs baby"...after all, that's what I used to say! But I am just realizing for the first time how some things do sound to others. Because it does feel a little bit like people are referring to you as something other than a person- like a different "class" of a person. Like there are boys, and girls, and then there are...Downs children. Anyway, maybe it is a small thing, but it's important to me, and when I talk to other moms who have children with special needs, maybe it is important to them as well.

Just one more way you are changing my world, Lily.

Daddy and I are headed to the outlets today. I am in desperate need of clothes that fit my after-baby-body. I love you so much, and you are worth every extra pound it took to carry you:) But I CAN'T WAIT to be back to a size 2 !!!

I will write more soon, baby girl.

Love always,

Your Mama oxoxo