Posted (Tina) in All Posts on April-9-2008

Ella was half and half today. No, I don’t mean cream and milk. She felt happy half of the time and the rest of the time, she was real fussy. Extreme opposites throughout the day. Josh noticed that she was pulling on her right ear. She has done that in the past and it hasn’t turned out to be anything. Hopefully, it is nothing serious this time either.

Thankfully, Ella took one full bottle today. Even one bottle per day, of only 75ccs, feels like a huge victory. Compared to other children, that is hardly any formula taken orally. But for Ella, one bottle per day is great. Again, we are hoping for 5 bottles per day eventually.

The key word is eventually. It really hit me today how long Ella is going to have a g-tube. Did I mention that I really do not like g-tubes?

While the weather was nice, I tried to get Ella outside today. I opted to try the Baby Bjorn and pushed the stroller as a back up. I think she finally has enough neck strength to face outward, so we tried that position. It was very bright outside, so I put on her sunglasses. Once I placed them on, she never tried to take them off. I think that means that she liked them.

We ran an errand this evening and thought we would test Ella in the back seat by herself. For the first 5 minutes, she was fine. I looked over the seat to check her out and she was just looking around.

About 10 minutes into the drive, we were at a stop light so I did the same thing. Except this time, she had her hand pulling on her cannulas. They were completely out of her nose. On top of that, she had pulled the tender grip sticker off her face on the left hand side.

For those of you that aren’t as familiar, this means that there was no easy way for me to replace the cannulas in her nose. I took off my seatbelt, leaned over the seat and tried my best to hold the cannulas in place. As I was leaned over into the back seat, we prayed for no accidents. As soon as possible, we pulled into the nearest parking lot.

Fortunately, the diaper bag is stashed with all kinds of Ella necessities. It requires skin adhesive remover, skin prep, and tender grips. We happened to be in front of Wal-Mart, so I opted to go inside for a few things. Once I was in the store for 2 minutes, my phone rang. I could hear Ella melting down and Josh asked me to come back to the car right away. When I arrived, Ella was just a mess. Josh was trying to replace the tender grips, but Ella was tired and not behaving for him.

In a calm way, I explained that we could pull into a discreet and well-lit part of the parking lot and change out the tender grips as a team. I held Ella and made sure the cannulas stayed in her nose and Josh went to work in three stages to change out the tender grips. A few times, Ella continued her melt down. Like any baby, she was simply telling us that she did not like what was going on, she was tired, and wanted us to stop messing with her. However, she needs oxygen and there was no way the cannulas would stay in properly without this process being completed.

Once she was calm, Josh held her while I ran into Wal-Mart. I came back out and Ella had not moved from her sleeping position. Now, I had to put her back into her seat and belt her. Sure enough, she got really mad at us again. It was like she was saying, “Would you stop messing with me and just let me sleep?”

It did not take convincing this evening to have her go to sleep. I thought she might like being rocked to sleep. She wasn’t interested in that business. She fussed continually which meant that she just wanted to be left alone to go to sleep. I placed her in the crib and she was asleep within seconds, it seemed.

Reflecting back on the car ride, I am not sure how I would have managed solo. This is one of my biggest concerns when we return to Denver. Josh needs to be in the office for work each day and when I have doctor appointments, I need to be able to drive Ella to them by myself.

Tonight was a clear example of a situation that would have been tough to negotiate on my own. I’m not sure when I would have noticed that she pulled her cannulas out in the first place (we have a mirror in the back, but it is still really hard to see her, much less the transparent cannulas). Secondly, I could have stopped the car to get her to calm down and hold cannulas in place, but changing them out and doing everything on my own seems impossible without an extra set of hands. I try not to think about these situations too much, but I am terrified.

All that comes to mind in this verse:

Isaiah 41:10
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

Thanking Him for another day with the Bun. Honestly, she has seemed a bit “off” the past few days. We are praying that it is nothing to be concerned over and that she is getting stronger each day.