Did you know this week was congenital heart defect awareness week?

I never in a million years would have thought that I would be an encyclopedia on how babies can die in utero let alone well versed in congenital heart defects. Mind you, Ruby had the heart defects that “if a kid has one, these are the ones you want”. I don’t know why people say that. Ugh. Doesn’t make one feel any better when they pass their 2 month daughter off to a surgery team who will stop her heart; but I understand that yes, it could have been a whole lot worse. I get that. I have experienced the “worse.” There is no pain like the death of your child.

After the loss of Everett, and over a year of secondary infertility, we secretly thought that God owed us a perfect pregnancy and birthing experience with our third child and maybe even a baby that was a good sleeper and a good eater…

ha.

We didn’t necessarily get those things, but we wouldn’t trade any of it for our Ruby, born July 25, 2011 with congenital heart defects. Ruby had joined the statistics, she was the 1 out of 100. We struggled with the feedings and sleeping, we were in and out of the hospital but most importantly her heart was successfully repaired on October 6, 2011.

1 in 100, that statistic is SO INCREDIBLE. I think awareness is out there in the world, but only to those of us and our friends and families who have experienced CHD. I think there needs to be more education and help for newly diagnosed children and families with all the feeding issues that occur. We were kind of just sent home with our newborn and expected to just look for a few symptoms.

fussy while eating.
sleepy…

ya know, the things that MOST newborns encounter. We felt so helpless and like we were doing something wrong, when in fact, her heart defects were the true reasons we were having such a hard time with feedings. Looking back, it is always easier to see what the problem is, but in the moment, it is terrifying. I’m so glad those days are behind us.

Ruby is holding her Beads of Courage, an amazing nationwide organization that supplies hospitals with beads for children who undergo multiple treatments/surgeries or things that involve courage. Ruby got A LOT of beads and each one represents something that was done to her. She has beads for things like: IV starts. She has 7 of those beads. EKGs and X-rays: 13 beads. Visits from PT or OT: 15 beads. Her heart bead for cardiac surgery and the list goes on and on.

When I see her beads, I wish with all my heart that my brother would have had the beads of courage. Of all people, he deserved them. 8 years of cancer…would have probably given him 20 necklaces. I have NO IDEA why MD Anderson in Texas or Mayo Clinic in Rochester, MIN would not have started him on this program. Makes me sad to think he missed out on it.

Conceived by our second attempt at an IUI, Ruby is our miracle baby on many levels. Thank you Jesus for giving us this gift in Ruby.

A couple of bloggers have decided to join up with other moms for a Pinterest Awareness Challenge for CHD Awareness. Check out some of the amazing stories. Ours will go up soon..

To read the history of Ruby’s heart defects start here

*Baby Drake Update* My heart is heavy as I say that baby Drake died yesterday (Friday) afternoon in his families arms. God. It is NOT fair. Not fair at all. Please surround Jon and Stacy with loving people and resources to get through this difficult journey.

*Baby Drake Update*

Baby Drake was born yesterday, Tuesday, at 2:44pm. He is in critical condition, but stable! I don’t have any other details, but will post when I receive them.

Folks, let’s rally around a heart family -Stacy and Jon. They will be giving birth to their son, Drake tomorrow who has already been diagnosed with heart failure. They will be delivering early to get him out and assess what he needs. You can read more of their story here

We understand the NICU experience. We understand the pain of a child that is sick. We understand the cardiac baby -although Ruby’s heart was not as complicated as baby Drake. We understand loss and grief and this kind of pain.

My prayers are that they would feel God’s love and assurance no matter what happens tomorrow.

I cried myself to sleep the other night. Thinking of that day, that if I had just made one different choice, he might still be here. Thinking of how close we must have been if they tried to resuscitate him. So close.

As I lay there trying to get to sleep, all I could think about my son dying inside of me. I kept replaying those events. Waking up from my nap. Dale at church working. Waking up not feeling quite right. Excited that tonight might be the night that I get to meet my son -that I get to go into labor spontaneously. taking Lindy to the couch and letting her watch one of her first long movies, eating some leftover mango italian ice to make my stomach feel better. Feeling worse and worse. Sitting on the toilet off and on all night, reading through my “What to expect” books on labor and experiencing 95% of the symptoms. Getting more excited, but not feeling well. Dale coming home. Us discussing at what point in labor we go to the hospital. Taking a bath and feeling much better. Dale clipping my toenails. There wasn’t any point AT ALL that I thought something was wrong. It felt like labor (Yes I labored with Lindy for 48 hours). As many mothers of children who have died, those distant memories of “that day” feel just as close and recent as a minute ago. The feeling of such pain.

To this day, I don’t know if they saw any heart activity on the ultrasound. I remember us only hearing one heart beat but after hearing that, I was in surgery probably 7 minutes later. Did they see him moving? What did that ultrasound look like? Did they just see a big pocket of blood? They didn’t say “we don’t hear a heartbeat” they didn’t even tell me what was going on…As they were putting me under, I was counting down…and praying desperately for everything to be all right. The hauntings that will go to my grave with me.

As I hold my Ruby, my mind wanders and sometimes I try to envision holding my son and wondering what he would be like. No child will ever replace the one that has left a void in my life. An aching hole that will never go away on this side of heaven. A son I will never know.

I stalk a friend and her little boy on facebook. He was born a day after Everett, March 2nd. He is such cutie, but when I look at him, I realize that he is a little tiny man! My Everett would be a little man -with loads of hair -probably curly. Not a day goes by that I don’t think about carting 3 kids around and how much trouble Everett would be getting into.

I miss him so much.

I love you my sweet Everett.

Ok. Quick stories so I can catch everybody up to speed.

This is Lindy at her Church Christmas performance. Yes, she was the one picking her nose instead of singing for MOST of the songs.

I went out to do some christmas shopping and came home to find Lindy in the living room playing with some packing peanuts. Daddy was cleaning the basement and thought the box of peanuts would be a good distraction. I walked in at 7:30pm….saw the mess and went straight to bed I was so mortified.

Do you realize that those peanuts, when ground all up stick to EVERYTHING?

I guess it took them and HOUR AND A HALF to clean up the mess with the shop vac. Dale said “never again.” Then, he said, “well, Ruby should be able to experience it too…”

Lindy and I took an afternoon and made the famous Copus Christmas cookies. I intended to make some beautiful cookies but realized that I could not be a perfectionist in this situation. IT.WAS.HARD. But I just let Lindy make whatever she wanted and however she wanted. I’ll have to make my own next year.

Stockings on Christmas Eve!

Ruby -5 months old!

ALWAYS watching her big sister…

Ruby is not eating well or sleeping well again -but I’ll take it! She is an absolute sweetheart anyways. Even if she doesn’t get enough sleep, she is a sweetheart. so happy. I think some more research needs to be done on these heart babies and their eating. I keep reading about other heart kiddos and they all have very similar eating problems.

We started her on the REAL foods this week (we’ve been doing rice cereal for a month). I don’t think she likes it yet, but I do. Her acid reflux seems BETTER because of some of this solid food in her belly. I didn’t get her the acid reflux meds until this evening and she showed no signs of acid reflux bothering her all day!! In the past, if I missed a med by a few hours, she would be irritated from her acid reflux. AND she started sleeping longer at night again. She is totally opposite of Lindy or rather my “methods” are totally opposite. She is a demand fed, pacifier, rock to sleep baby. It is really really hard for me. I think the babywise system is ideal and she is the exact opposite. I don’t really like the fact that she has to be fed to sleep or pacified to sleep and I’m definitely creating a monster, but I’ll worry about that later.

Big sister Lindy turned FIVE this week. We celebrated, the 4 of us; no owls or candyland party this year. Just us. You can see the lame cake I did this year. I bought a cake at 8am, cut princess pictures off the back of a new coloring book and smooshed them into her cake. That’s it. I don’t think she cared either way.

I am so proud of my curly haired girl.

I LOVE this time of year. All the traditions, the music, the lights, hot chocolate, decorating, buying the presents, stockings, magic, and of course, the real reason -Jesus’ birth.

We are traveling to Illinois for the week, between Dale having to work on the weekends. Merry Christmas to you all and we hope you are celebrating with those you love and finding peace in your hearts.