The Nursery Nook

Finally...the nursery nook is complete! We've been home a month and I have just completed her "corner of a room". (Double click on the pictures to get a closer view)When Bryan and I got married, we never thought through our remodeling job, so here we are, 8 years later with 3 kids in our two bedroom home...so Maddie's room is officially the corner of our bedroom. Even if she had her own room, I doubt I'd let her sleep in it until she's like 16, so having her with us is just perfect! These are also the quilts made for Maddie by my girlfriends, my friend and cousin Carly, my friend Alisha, and my mom (clockwise, in that order). What a lucky girl! Being a quilter myself, it was such a treat receiving these quilts and knowing how much time, thought, love and hard work was put into making them for our little girl.

What a Difference

What a difference a month makes. Maddie was 6 weeks yesterday and I'd just like to share with you a "before" and "after" of her. Her surgery was a little over a month ago. This is her, 2 days after her open heart surgery. Swollen, sedated, scarred and on support to live. I had never posted the worst pictures because I was having a rough time then, afraid of what was to come and in complete shock, even though I thought I'd prepared myself. It was hard seeing my brand new baby look like this. Somewhere under all of the lines and tubes was my Maddie. Most of it is a blur now. I'd also contemplated posting these because I thought Madison would someday hate me for it. But this is part of her heart journey and where she's been. Her story is not complete without them and it's a reminder of how far she's come, just a little over 1month ago... It's truly amazing and a miracle of how fast and how well she's recovered. We are so blessed and very lucky with the path of recovery we've been on. I knock on wood every time I pass a piece of furniture! I hate to say this, but I await our "hurdle" since she's done so amazingly well. She is not the "typical" hypoplastic right heart baby. Now, a little over a month later...you would never tell that she has only half of her heart working by looking at her. She does sleep a lot and she's much more spoiled at this age (wants held all of the time!!!) but most babies are like this, aren't they? She's doing all of the things that a normal baby does, notice the hands doing "wax on, wax off" motions and the total concentration on her face! Too cute! I also have to note that my pictures DO NOT do her justice... Anyway, I just wanted to reminisce on the progress she's made and I know a lot of it has to do with her but I do give my praises to God...He's been so good and answered many, many prayers. What a difference Maddie's journey has made in all of our lives!

Miss Maddie

Here's a few pictures of Miss Maddie. She's quite the girl these days...doing all the things that babies do. Her appetite is really increasing and I swear I see a new "crease" everyday! Thought you'd enjoy some recent pictures, plus no NG still! Yippee!

Cowabunga!

This is what our house looked like tonight...and here's the culprits right before bed, looking a little delirious. I only took 1 picture of the mess to give you the "gist". Jace and Cade invented a new game today that they called "Cowabunga" and this is the aftermath. All the cushions off the furniture are piled up and then they do pile-drives on them, yelling COWABUNGA as they dive off the highest piece of furniture they can find. Fun huh?!? There was another pile of pillows on the other side of the room (every pillow they could find in the whole house) and they use these to "builg fings" (as Jace says) then destroy their creations by jumping into them (usually, 1 kid gets lit on in the process). Here I'm stressed on keeping Maddie out of the hospital, maybe I should reconsider what I let these two play? ER visit in our future? It's easy to stay home when you have these two to entertain you!I also had to post this picture because my friends always laugh at me in disbelief when I say our house is always messy...see, it really is!!! Do you believe me now...and it's looked much worse!

Super Girl!

We had our appointment with our Cardiologist yesterday and Maddie is doing awesome!!! We couldn't be happier. She gained 9 oz. in 10 days...up to 6 lbs 13 oz now and she's officially on the growth chart! It's hilarious because her growth curve is a vertical line...no gradual curve there! Her echo cardiogram was beautiful, her heart is functioning and looking like it's supposed to right now. The sonographer got great pics, Maddie slept through the entire thing. She also had an EKG and overall check-up. We're just so thankful that everything is going great. Her NG tube is currently out, we're on day 3 without it now, and we only will put it back in if needed. So far, so good...she's finishing all her feeds by bottle! She's a super girl!
Super girl's mom is a little jumpy though...I woke up Tuesday morning (2 am) with her, panicked that she was getting a cold! She sounded "stuffy". Let's just say I was a bit of an alarmist...she's doing just fine, no cold is transpiring. So, we're still planning to keep her "isolated" for the next few months (like 6 months) until she gets her next surgery. We DO NOT want a setback and getting her sick would be a big one. So, we're enjoying our quiet life here at home!

Happy 1 Month Birthday!

Today Madison is 1 month old! Wow...time has flown by! This past month has really been a blur. So today I stood by her crib while she was napping, camera in hand with my trigger finger ready, as she was happily dreaming away. I love how babies dream: they smile, their eyes flutter, their quick little breaths and even a giggle here and there. But what do they dream of? So fun to watch. I love my digital camera but it's so slow...all you're gonna get is the end of her sweet smile. Here's to our happy baby girl on her happy "1 month old" day! (By the way...Maddie's due date was tomorrow-April 14th! Maybe this is what she's smiling about! She fooled all of us! I prayed for a strong willed baby...think I got one!)

Heart Mom's

Since being home, I've done tons of research on the Internet, mainly trying to find another family with a child who has Maddie's heart defect, or a similar one. I've definitely found the need to talk to another mom who's been there. There is a support group that meets once a month at Children's Hospital, but I don't know how often we'll make the 3 hour drive over for it. So, I've resorted to looking on the Internet for support and to just find a mom to chat with. I've made a couple of contacts so far and these mom's are so willing to share their story and to talk. Without even knowing them, we share a common bond. A heart baby. And while searching, I found THE CHD BLOG and would like to share this poem I came across there. It's a tear jerker...so get ready. Boy, does it speak to my heart though and all of the thoughts and feelings I've had since finding out we had a heart baby on January 2nd. Speaking of my heart baby, she's had another good day BUT her nights and days are mixed up...so I'm typing 1 handed, holding my little, delirious night owl! We both need some sleep!

"The Day I Became a Heart Mother"

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she's here,
but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will she be alright?", to watching her reach out her hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to her beautiful heart).
God must have known how much I'd love her (Just as He loved her from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown

Photo Opp!

Well, Maddie did it! Those dainty little fingers have jerked the tube out of her nose, twice now. Do you blame her? Not like she knows what she's doing, but she is really good at it and each time I've been holding her! You'd think I could have stopped it, but she's a quick little bugger! So...I'm proud to say that I have officially installed her NG tube now! Bryan had "passed" the test before coming home from Children's and he'd put it in a couple of times over there then once here. Last night, I stepped up to the challenge and it was a big success. Hardly any tears (for either Maddie or I this time)...lets just say that mom has the touch. I took a quick photo opportunity without that pretty tube...wanted to share her entire face without it!

She also had her first check-up with Dr. Allred (Uncle Lowell) on Monday and gained 5 oz. in 7 days! She's 6 lbs. 4 oz. now! We think that's pretty good for a little marathon running heart! We had trouble getting her O2 SAT's there so we took a trip to the Ephrata Hospital to get a better reading. To our surprise, they were very low there as well but my baby was not showing the signs that go with these kinds of numbers. I knew that the monitor had to be wrong...plus it wasn't really equipped for babies. After talking to her cardiologist, we figured we better get a good SAT reading for reassurance, so Bryan and I drove to Wenatchee's ER to get another reading and tracing for accuracy. Her SAT's were fine...78-81 (this is within normal for Maddie (75-90)). I now I have a SAT monitor being delivered to my home on Friday morning. This will be nice to have, since we need to watch hers closely. Her next surgery, the Bi-directional Glenn, will be scheduled based on where her SATS are plus her weight, health, etc. So, in 4 3/4 years of parenting, I made my first run to the ER! I have a feeling it won't be the last with our little darlin! We're doing really well though...enjoying being home and trying to just "catch up" on rest. Funny how you feel after a month of little sleep! Maddie is a very good baby though and improving everyday with her feeds. Yeah!

A Special Birthday

Today was my 30th birthday...what a wonderful day it was. I had originally thought I'd be spending this day in the hospital either in labor or with a critically ill baby, so being home for it, with Maddie, is such a sweet surprise. My mom made us my favorite dinner and we just enjoyed "hanging out" here at home. I'd missed the normal day to day stuff (that I took for granted) during our hospital stay, so this is all I wished for on my birthday. Being at home with my little family, what a blessing. Here's a few pictures to show how "normal" our day was...truly a great way to bring in the BIG 30! The little boys are anxious to play with baby sister...Jace linked these together then attached it to her arm so she could play too! Don't worry...we're watching them very closely with her!!!

Home Sweet Home

Ahhhh, we're home and getting settled in. We were discharged on Sunday then home to Royal on Monday. Only 10 days post surgery...17 days from her birth, we're HOME! Our house was disinfected and thoroughly cleaned as well as our yard well-manicured. THANKS to our dear family and friends for all of your hard work...it was such a bonus to coming home! I LOVE having things clean and tidy, so thank you so very much!What a treat! Maddie is simply amazing. She's doing well, we're learning about our little addition as well as getting into a new rhythm around here. "House arrest" is what we're up to now. Staying isolated and avoiding "sick" exposure for Miss Maddie is very critical. A simple cold or flu could send her to the ICU and be life threatening. Her heart is still overworking until her next surgeries, so we want nothing to compromise her health. A new baby is always a little challenging but a heart baby is even more. We stay to a very strict schedule for her feeds (which take up some time), meds and rest. In my "spare" time, I've been trying to get caught up on my sleep, since running on adrenaline has stopped. Exhaustion is setting in and there is not enough hours in the day I'm finding out.

Our boys just adore her. Everything is so new to them, I hope this excitement stays...it's so fun to watch. Watching their faces smile and giggle at her brings such joy to our home. Life is so good! Holding her has become quite the "competition" between them. Let's just say we've invested in tons of Purell too...I'm a little germ-phobic now. BTW, this is a picture of Maddie with her awesome Cardiologist, Dr. Meg Vernon. We just love her and know that Maddie is in the best of hands. We'll be seeing her lots in our future!