Feeding battle..which is actually a battle we all have.

As you all know London's aversion to feeding has gone on...almost 10 months. 

The last time eating was a pleasurable experience was in the womb. She never got to eat her first week of life. That's when babies get the eating thing down! When she was able to eat..she never tasted it or worked for it. She finally got to taste it and vomited constantly. Eating means it came up..try to feed that same taste to her? She's not stupid..she just wouldn't do it. She knew it would come back up and burn. The taste was ruined. 

We tried every bottle at babies r us. Every formula. Every concoction of how to make it different...nothing.

Try teaching a 8 month old new tricks she should've learned week one...try almost saying "okay, so now you gotta work for it..and like it...which you never have" 

I spent countless nights and days crying over her eating. Something seemed so evil about me not being able to feed her. That's what mommies do. I felt robbed. It stung like a knife to see moms feed..or breast feed (but that hurt will always be there). It was my deepest desire to just feed my child. I feared for the future. I feared that she would one day look me in the eye and feel anger that I didn't try harder for her. I didn't push and try every avenue for it to not go to surgery and have a tube/scar along with her others. 

Satan will always find ways to sneak guilt into me. Her feeding in ways was a big way I felt another guilt. It was another way he could sneak thoughts like "look at this other scar...you did this to her." 

It would be mountains and valleys. Some days I would be okay that it's not working..because we've been so blessed 

with many other things. Some days I was every other word but okay and was point blank furious. I'm not proud of my behavior and actions some days. 

One night in my brokenness I prayed "God, please help her THRIVE..I've made this about me..please make her THRIVE." I hoped that would envelop all that was the problem.  

She slowly started to eat. Eating slowly became easy. Drinking was now impossible. It seemed like we were drowning. So much progress but in the same place. Still needing a tube.

I pulled the tube for the second time with all hopes in my heart it was the very last time. The first day she just ate..all formula was snuck in food bites. That night I felt defeated. It still wasn't enough to keep it out. 

The next morning it went about the same. I called Trey so defeated that we can eat, take medicine but no liquid. Liquid was going to be it..the tube would have to go down again. When would the cycle ever be broken? 

She went down for her morning nap and I thought to myself...she likes food...I snuck formula in food...try liquid formula/food? We have a mini blender and I put all her formula for a feed and a squeeze of her favorite baby food. Blended that puppy up and tried it...she downed all but 2 oz of her feed..which she then completed in food. Tried it again that night and she took even more. 

Another miracle. Another desire of my heart fulfilled. I worked DAMN hard for it. I now have a PHD in "the misery camp of feeding a aversion baby". 

99.999% of us don't have a feeding aversion..but guess what we do have? A surrender aversion. Every time I've given her over..he rewards me.

Give over your stress, your hurt, your desires, your sins, your mistakes..your starving for success..I promise the one who created you knows exactly the way. It might not be all the avenues you've tried. Keep trying for what you want and need. The first, 500th or 10 months worth...14+ times a day might not be it..but one day he will give you just the right ticket. 

Keep trying. He listens and one day you will finally be full, satisfied and thriving. 

Xo

A constant battle between awareness and choosing to avoid

Blogging gives me a release. Sometimes when I feel a certain way or feel misunderstood it's therapeutic to get it out. Here's what's been on my mind lately..the brutal honesty and all.

February is a month for awareness about heart disease. Heart disease in women, heart defects in infants, etc. You've seen me post many things about donating, to please wear red, pictures of our journey to hopefully have you remember that this road isn't easy. That's part of me...to bring awareness. Awareness = caring = donations = research = lives changed.

The other part of me wants nothing to do with it. Count me out. Some days I feel angry that I'm even in this category. One organ is effecting my beautiful little girl. One organ made my pregnancy stressful and not blissful. One organ makes me stressed to finish our family. One organ made me miss a lot of her babyhood. It's a sadness I've been dealing with lately. One organ made me not be able to breast feed her. One organ made her have crap on her face her whole babyhood. One organ made me not sleep with her every night..she was at the hospital, I was at the condo. One organ made us quarantined and miss out on summer, fall, winter, and starting to be spring.. One organ makes me feel her hands and feet, mentally remember how much urine output she's had today, check her heart rate and saturations daily, look at her coloring, fear after every vomit...I feel robbed by CHD. Sometimes want to feel naive and live like I don't know. I don't like this reality. It's a mean reality that never goes away. 

Sometimes reading other heart blogs or looking at other kids pictures makes me fear for her. 99.9% of heart moms are a little negative about their child, almost like they are waiting for the ball to drop or watching a "dying" child. I can't and won't live that way..it's not good thoughts for me. It's not fair for her, she has no choice on her life. She's ours and I'm her biggest cheerleader for an AWESOME and full life. 

Knowing we can't have a transplant in this science age (that's why we need research funding and fast)...this heart is all we have for now. I can't live like it's a car speeding into death. I won't. I trust The Lord with our lives, he turned our last hopeless situation around. 

Sometimes I want to sit down with those moms and say "all your other children are dying kids" all completely healthy people are "dying people"...why live like you are an exception? Nobody told you when your healthy child was born that they get 95 years or 10, it's not your answer to know. Your mind thinks the two are seperate, were all dying people.

There will be nothing I tell London she can't do. If she wants to play a sport...go right ahead. When we were pro life in utero, we are pro life out of it. 

February is a double edged sword for me..we desperately need awareness and research but part of me doesn't like the category that puts me in. Call it rude if you will..it's how I cope with it. Please donate, know that these kids are 1 in 100. It's a brutal reality and one I care to fix but also wish I could toss. Xo

Trauma and my smiling Bible

Living in these last 7 months was like autopilot survival mode. You wake up, do what you have to do..another day down waiting for surgery and "going home".  I almost was numb, I had no emotion most days. I don't think I even cried when I should have. Every single thing she did I had to watch for. Children's has a safe at home program that has red flags to look for. Faster breathing, vomiting more than twice a day, fever, change in color, anything that is "different than her norm". We checked her heart rate and oxygen saturations everyday, we weighed her at night. Every Friday or Monday we went to clinic to have a doctor and the hospital put their eye on her. Throw in many trips that something was critically wrong, we would stay overnight..for many nights. One time it was worse than we brought her in for. All the things I was taught to look for..happened. Her heart failed. 

We finally got surgery and were considered high risk all around the hospital. The child who was so unpredictable. The surgeon who loved her and would do surgery..knowing her risk. She was in his category of higher risk for mortality. I signed papers saying I was okay with that. 

I remember laying there that night before surgery knowing tomorrow the odds could be she is no longer with me. We could have lost our battle. The battle we all gave our life for. 

She did amazing. Out in 6 days and came home. 

We all struggled. London wasn't doing well with feeds anymore. My day was trying passy dips, baby food, bottle, playing in food, putting milk in syringes and squirting with her passy, sippy cups, etc. with nothing but screaming or vomiting after she gagged at me. I cried for lots of reasons. I was grateful, sad, beaten...

What in the world did I just go through? I can't believe I did it. It's trauma. A car wreck of emotions for 7 months.. Just not outwardly visible. 7 months not counting the months of pregnancy knowing what we will face. The 13+ times I was told I could abort. 

I felt moments of grief in my jubilation. I witnessed a miracle but many moments when little things are hard (eating), I grieve the loss of a "healthy" child. Grief all the while being thankful with all my heart. What a double sword. 

I'm not a negative person. I don't live like that. You'll never see me live like that. London will be treated and live normally, like I never knew of her weak heart. 

I needed to get it out..it's not healthy for that much trauma and to keep it in. 

She's a gift from Jesus to me. She gives me no choice than to learn patience, thanksgiving, mercy, pureness, "stronger than the grave", sympathy to many with depression, sympathy to many with helplessness, sympathy to all moms. 

She's a gift of all the hard lessons in life. I get it all at once in a smiling beautiful pink package. For that, I'll take trauma everyday for the rest of my life.