Can’t stop thinking about my dear friend Kristen. One year ago today, her sweet son, Gabriel was stillborn.

My heart is heavy for her, just knowing what she is going through. We celebrate his life, even though it was so short. He has changed many lives.

Hugs and love to Kristen, Mike, and little Hannah.

The feeding tube came out because we were able to get her to drink a certain amount from the bottle.
I think I was so happy the tube came out, I just put up with the crying. The crying is wearing me down and I’m left wondering why my child cannot eat.

It.has.been.rough.

I decided to videotape a feeding just for your pleasure. If you tend to have high blood pressure, you probably shouldn’t watch.

She’ll start out just fine for about 30ml and then start to freak out. Once the bottle is done, she is probably still hungry but we just can’t get through anymore. We’ve pretty much both just had it at that point.

She acts like I am feeding her fire.

The in-home nurse came and told me that with acid reflux, kids can feel fine for a bit and then at a certain point, the food starts to come up and irritate them. I guess it just HAS to be acid reflux. The nurse sold me on the idea more so.

She’s been on Zantac now for probably 6 weeks. But she’s only taking it twice a day and I give it to her right before she eats.

Today, I decided to give it to her 15 minutes earlier than when she is ready to eat. Didn’t help. 30 minutes earlier helped a smidge but I was still forcing her to drink half of the bottle and half is ONLY 40ML. You can see how little I’m trying to get into her in the video.

Yup folks. That is us about 8 times a day.

Sometimes I think maybe there is still something wrong with her heart or there is something OTHER than her heart going on. Let’s see. What could it be:

1. Acid reflux
2. Something in the breastmilk
3. Allergic to something in the formula
4. Sucking problem
5. Gas
6. Maybe her chest hurts
7. Just a typical 12 week baby? (does YOURS do this?)

Not that I need anymore sleep at night but what do YOU think?

We meet with the feeding specialists tomorrow at 7:40am. From there we are scheduled for a swallow study at 2:15 where they will do an ultrasound of her throat while she is eating.

God. Are you listening? I hate seeing her in pain. I wish we could just ENJOY this baby now and make her comfortable. I wish you showed that you cared about the big things in my life. It has been a long 12 weeks.

Makes me think about my baby Everett. Wondering if he had all this destined for his first 12 weeks too. Wonder if HE had heart defects or if he would have been in the NICU for 2 weeks. I would be totally ok with that if I had him back.

Here we go. Glitch #1.

I gave Ruby her regular feeding this morning, breastmilk fortified with oatmeal at 10ish. Apparently that is considered a solid and she can’t have solids after 8am -the nurse that gave me the directions this morning was incorrect.

We must now wait until 6:30pm to begin the anesthesia. The surgeon will will begin the procedure in earnest about 8:00pm.

Wow. I am not in my 20s anymore.

I felt like I was in my 20s a LONG time. I guess since I went to college, married the man of my dreams, got a mortgage, had 3 kids, went through grief like none other in my 20s…that would seem like a lot of stuff crammed into 10 years.

I’ve always been the kind of person that didn’t care how old I was. I don’t understand women who color their gray hairs. I’ve always said, when I get to that point, I’m going to embrace it. (Yes, I do have some gray hairs, nothing crazy yet.) I guess ask me in 10-15 years. I’m pretty sure I’ll still be pretty low key about it.

Me as a newborn

Dale and I have caught ourselves the last month on how old we feel. At the hospital, looked like all the nurses were 15 years old. We even nicknamed one of them “15.” All the teenagers that came into the hospital and what they wore and how they acted. Shocked and appalled us. I guess that is a true sign of aging. Anyone else feel that way? I do also feel that the last few years have aged us.

Yesterday was a GOOD memorable day. Lindy treated us to lunch at Applebees (her favorite restaurant, I think because she could read that sign really early on). Aunt April had given her a gift card so Lindy wanted to share it with us. Dale surprised me with some amazing gifts and if you ask him, he probably felt a lot of pressure, this being the big 30. I woke up to 30 beautiful balloons with puzzle pieces tied to the bottom. I put the pieces together and you know what was on them? A hot air balloon. You know what he got me? A HOT AIR BALLOON RIDE! It has been on my “bucket” (for lack of a better term) list since I was a kid and Dale was able to arrange one in a few weeks. I.am.so.excited. A wonderful date with my hubby. Something to look forward to. I immediately thought about Ruby and who was I going to get to watch her who could feed her through her NG tube and then realized that she will HOPEFULLY not have one at that point!

A few wonderful friends had called and wanted to stop by last night so we saved the ice cream cake for such an occasion. So an amazing day was had by all and later this month, me and some girlfriends are going to a pottery painting shop and then out for fondue to celebrate.

I see a lot of Ruby in this picture

Looking back on the past 29 years…the most important question to me is “how I have served Jesus in my life?”. That is the ultimate question for me and the only thing that will matter on the day that I die. I can tell you key seasons of my life where I was faithfully serving God through reading His Word and talking to Him. I can also tell you when I haven’t and there have been YEARS where I haven’t been as faithful and disciplined. I had a good friend who has been listening to me whine and cry and ask “why me?” many times in the past 2 years. My friend said, start asking God…”What for?”. I like that. What is all this for? How can I glorify God through these trials? What does He want me to walk away with through all this? Easier said than done; but I want to get over this bitterness pity party.

Honestly, many times as I kept getting bad report and bad report on Ruby, I would think and say “Why doesn’t God love me?”. I know that sounds so selfish and awful but that is how I feel after bad news and bad news after bad news. I know many of my friends have gotten bad news over and over again or maybe just some bad news here and there or things that don’t go the way we have planned. Job loss, child loss, divorce, special needs child, dysfunctional family, poor health. And on the EXTREME side, I think of the Sudanese mothers who had to leave their dying children on the side of the road so that they could continue on with their alive children (really obscure, but true). Breaks my heart of all the awfulness of this world and reminds me that this life is short and there is only ONE good in this world and that is Jesus.

Another friend encouraged me by sending me the below truths.

“The devil will whisper lies to you, but ‘there is no truth in him. When he lies, he speaks his native language, for he is a liar and the father of lies.’ (John 8:44) He will try to pin the blame for every problem on God. He will try to tell you that God doesn’t care, that He has forgotten about you, or has turned His back. Don’t fall for that. Remember that Satan would like to twist your thinking so that instead of clinging to your heavenly Father, you confront Him with accusations. Run to Him, not away. The Lord is good, a refuge in times of trouble. (Nahum 1:7)”

So, I guess this was more of a motivational blog post FOR ME. To encourage me and to put things in perspective. To knock me over the head and realize that truly the most important thing, through good and bad, is serving the Lord.

*As per my last post…I gave you a glimpse inside my head…it probably reveals a little bit as to why I tend to deal with depression in my life. I got a lot bouncing around in my head, pretty much MOST of the time and a lot of it is held to some perfectionist standard that is unreasonable for me. Someday I’ll get a handle on it.*

My baby girl is growing up. Today was a monumental day for two reasons. Lindy is attending her first “summer camp” at her daddy’s theatre company! A whole week of playing and acting and then a little performance on Friday. This is the first time I’ve dropped her off for this extended period of time and I’ve had time just to myself -for a week straight! I felt like I was dropping her off for kindergarten with her little lunchbox and pep talk on how to behave and answer the teacher when she asks questions. *Tear*

Parents could stick around and watch the kids get adjusted into the program, so Dale and I stood out of sight around the corner. LOVE all the teachers and assistants, we’ve known them for years -Dale taught almost ALL of them when they were younger.

The second monumental thing happened that I wasn’t prepared for. Folks in our support group have said, these moments will creep up and hit you at the least expected moments and it did.

At camp, they started to play a game called “cross the room.” I’m sure you have played it before. You line up on one side and if the teacher says something that applies to you…you cross the room to the other side. Started out with the simple stuff, “I have a cat” “I have a dog” and then it happened. I KNEW the questions were coming. “I have a younger sibling.” “I have an older brother.” Lindy stayed on her side of the wall. “I am an only child.” Dale and I held our breath, no knowing how she’d respond. She’s never been asked that question before. She stayed on the wall, didn’t move. We were so proud. She GOT it.

THEN, the wonderful, oh so lovely teacher (I love you dear, no worries) called her out and said, “Lindy, you’re an only child right?!” and Lindy politely pranced to the other side, looking up at the teacher saying, “I have a baby brother.” I don’t even know if the teacher heard her but it was precious and heartbreaking and just plain hard to see Lindy put in that simple situation.

Of course, I don’t expect everyone to be thinking of our sweet baby Everett, but it is constantly there in our minds…waiting to be acknowledged. Dale and I wept in the hallway. She will have to face those questions for the rest of her life.

We are so proud of you little girl. Pretty soon, you’ll be able to say “I have a baby sister.” Real soon little girl.