Mine Forever

Photo taken by Ruby's Daddy

If days could be weighted, Ruby's days in our arms would outweigh her days in heaven. The scale would be tipping toward us. But, just for today. Tomorrow it will be 7 months and 1 week since we said goodbye to our sweet daughter. The 7 months and 1 week we spend with her seemed like a lifetime. It is hard to believe we have almost spent as much time away from her, as we got to spend with her.

I have been anxious about this day approaching for awhile now. I have just felt like I needed to be able to say, "she was mine longer than she has been gone." Tomorrow that changes.

I remember feeling something similar about a month or two before she passed away. We had just been admitted for maybe the 6th time to UCLA, and I was still only hopefully and very confident that she would get a transplant. At that point I was more worried about getting the call, and how scary transplant would be. Running out of time, was just never something that really worried me. I vividly remember holding her and feeling like my heart was gong go burst with love, and having an overwhelming feelings to write my feelings for her while I could still use the present tense. The thought seemed strange to me, but I followed my instinct, and wrote about her that day. I am glad I did.

In my situation, I grasp onto anything I can that is related or significant in ANY way to her. I gained 50 pounds when I was pregnant with Kate, and was very motivated and anxious to lose that weight after she was born. I still have about 20ish pounds of weight from Ruby's pregnancy I need to loose, and I have zero motivation to lose it! I know I need to, and I want to, but I have taken no action to actually do it. Am I bring sentimental about baby weight?! It is more than baby weight. It's making any changes really. It's moving on that is scary. Her bath towels are still hanging haphazardly behind the bathroom door and I dread ever moving them. There are still little smudges of some medicine on her changing table, and I can't bare to clean it. I want those little physical reminders of her there.

I guess really what I am saying is that I am possessive. Since so much was taken away, I cling for dear life to anything that is still within grasp. Even if it is an obscure about of time, baby weight, or dirty smudges.

I am forced, for a time, to settle for these little things...

So for tonight, I will say, "She was mine longer than she has been gone."

Even as I write that I realize just how funny it really sounds, because of my clear and strong belief and knowledge that she was mine longer before I ever held her, and that she will be mine for longer than I can even imagine.

I would be lost without my knowledge of His great and perfect plan for me.

Of course He would create a way for us to be together forever.

The Sheet Drawer

I go into Ruby's room everyday. I open her blinds in the morning, and close them, and turn on a light at night. I don't always spent a lot of time in there, and in the past couple of months, hardly any time at all.
Today I rocked in her chair. I went through her clothes, and headbands, and stuffed animals. I hugged her blankets, and sobbed into her burp cloths. I was needing to feel a physical connection to my baby, so I touched and smelled, and looked at her things.
I opened her bottom dresser drawer, which I had not done yet. That was the extra sheets and blanket drawer. Looking at her extra sheets brought back memories that I had forgotten about. I remember going into Pottery Barn with her, and picking out some extra sheets, because she was constantly spitting up her orange vitamins on them, or throwing up.
It reminded of so many long and hard nights that Matt, Ruby and I went through together. Ruby would cry, and we would both shoot about of bed, and immediately, almost like a robot, begin to work. It was really hard having a sick baby, but at the time, we didn't realize that. We just knew what needed to be done, and we would do it.
If she had thrown up, it was probably about an hour process before we could get her back into her bed again. One of us would pick her up, and the other would grab her TPN pump then we would start sterilizing her line. Matt would be handing me alcohol swabs, and then get the saline flush all ready. I would grab the saline and flush her line, as he would remind me to close the clamp. A perfect team. Then as I would take off her yucky jammies, and clean her up, take her temp, Matt would strip the bed, stain-treat the sheets before he would put them into the washer. Then we would usually need to give her a little milk which needed to be warmed, and then have oil added, and a few meds mixed in. Matt would return upstairs with milk, more medical supplies, and we would begin to get her hooked back up. Sterilizing her line, connecting her PICC to the tubing, and then resetting the pump. We would put the tubing inside her shirt sleeve and down her bottoms, securing the line in the velcory part of her diaper, and out the bottom of her pants. This way she would not be able to grab it, and it would stay away from her neck. As Matt would feed her the bottle, I would remake her crib. As he laid her down, I held the pump, and we would get her all situated and comfy, kiss her and tell her we loved her, and turn off the light. We would then need to write down the meds she took, how much milk she drank, how much fluid she threw up, and if she had a wet/poopy diaper.
Sometimes, this would happen 2 or 3 times a night. It wasn't just a quick diaper change by the light of the night light. All the lights would be on, upstairs and down. The washer would be running, Matt going up and down the stairs, the microwave beeping, and us yelling back and forth between upstairs and down. I never remember us complaining to each other though. It was just want we had to do, so we did it. In a way, I think doing all of that stuff made us feel good about our roles as her parents. There was not much we could do to make her better, so we took care of her in the best way we knew how, and I think we took pride in that.
Opening that drawer today, did not bring back painful memories, but sweet memories of me and my sweet husband serving our daughter. We were such a good team, and we worked so hard and so long trying to make those 7 months, and one week, the most comfortably for Ruby, and also for Kate. It was all we were; parents. Our girls were our only care, our only focus. They were all that mattered. Were they happy? Where they comfortable? Do they feel loved? One of us, alone, could have never parented our girls in that time, with out the other.
Those sheets remind me about what parenthood is. Teamwork, service, and love.

This life, that life.

I am constantly counting the days to some sort of anniversary. Last year, today was the last day that I lived my normal life. I had a crazy two year old, and a newborn. I was just getting into the swing of things with my two kiddos at home. I don't know if I talked about this before on here, but I remember very clearly sitting on the couch with Ruby in my arms, and saying to Matt something along the lines of, "We are so blessed, that sometimes it scares me. I am always wondering when our trial is going to hit." It was anything but comical when only a few days later my greatest fear came true.3.1.11

We took Ruby to her 2 month check up and I had a list of a few things I was worried about. I remember thinking that I never did that with Kate, and wondered if I was becoming more paranoid with each child, instead of the other way around. After discussing her jaundice, her doctor wanted us to take her to the lab for a blood test. It was around nap time, and I remember asking him, "We can just do that tomorrow right?" I was so confident that everything was fine, that I went home and put my two girls down for a nap. That day I was worried about napping, and a behavior plan for Kate.
3.2.11

The next morning, I dressed all three of us (a real accomplishment!) and headed to the lab. Since she was so tiny, they pricked her heel, and had to squeeze the blood out. She was crying so hard, and I was holding her down with both hands, I let her suck on my chin. I was desperate to do anything to make her stop crying, and to give her some comfort. After several different pricks and a lot of squeezing to fill up the tubes, we were on our way. I remember laughing when I got into the elevator, because I had two giant hickeys on my chin!
3.3.11

We stopped at Cafe Rio on the way home. I had always stopped there after my OB appointments, and it was fun to actually have Ruby with us this time. I think we got Cafe Rio to go, and I am assuming I came home and put the girls down and enjoyed my lunch, and my alone time.
Around 5 or so that night, our doctor called. He said that there was some elevated numbers, and that it indicated there was some type of problem with her liver. He had already made calls, and we were going to be admitted the next morning for further testing. I remember asking him, "Is this serious?" I assumed he would say no, we just want to be safe. That wasn't the answer I got. And is the moment that my world began to shift.
We packed a bag for 2 days. We had no idea what to bring, or what we were doing, or what was ahead of us. I remember them bringing us up to our hospital room, and handing me a blue hospital gown for her with little blue clouds on it. That was enough to make me want to run the other direction. Whoever escorted us up to the room, said that a doctor would be by at sometime, we can't feed Ruby and then left.3.4.11 (me, before)

There was only one chair, so we took turns standing, and then finally realized the chair pulled out into a "bed". We kept looking at each other and saying, "What are we doing here?" The minutes turned into hours, and we still had not seen anyone. "Let's just get out of here! Everything is fine." We felt so silly. We had no idea what we were doing. She was hungry and wanted to nurse. The only thing to calm her down was to let her suck on our fingers. The first trick we learned, and little did we know it was something we would have to do to sooth our baby time and time again.

After while, I couldn't stand to see Ruby in that silly gown, so I changed her back into a cute outfit, and that was pretty much the last time she ever put one on again!

The days and weeks to follow were in one word, horrible. I think that I went through much of my grieving for her sickness in those first two weeks. We did not leave the hospital. We slept on the one pull out chair together. I don't remember ever going to the cafeteria there. It was the boot camp that was preparing me for the long months ahead. Now I was worried about one thing, and one thing only; my daughter's life.
(Me, after)

One year ago today...I had no idea. I had no idea the amount of love I could have for my children and husband. I had no idea what a "hard day" really meant. I had no idea how strong we can be, when needed.
Looking at myself 365 days ago I can say my love is deeper. My testimony is richer. My faith is strong. My hope is my salvation. Ruby is to thank for these things. She changed me for the better, and continues to do so every single day.