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.

Kara on April 9th, 2008 at 8:05 pm #

If God will lead you to it he will lead you through it. He already has all your concerns worked out. You just have to actually get there before he shows you the answer. God is so cool.

John & Estela Williams on April 9th, 2008 at 8:06 pm #

Great pictures.. love the one of you two girls in the beautiful Florida weather. It’s suppose to be snowing and cold here in Denver tomorrow. Love you guys!

The Brittain Family on April 9th, 2008 at 9:55 pm #

bet there are some ella-lovers in denver who’d be more than happy to chauffer Ella and her mommy for appointments, etc! we’ll be praying for God’s continued provision. get sleep : )

Julie on April 9th, 2008 at 10:45 pm #

As you probably know, ear-pulling can be a sign of teething. It wouldn’t surprise me if that were the case.

And I bet you can find a friend or two who would ride with you to appointments to make sure all goes as smoothly as possible. I’d do it, if I lived in Denver. (-:

Love to all!

Joel Snyder on April 10th, 2008 at 3:56 am #

Ella, You look fabulous in your shades running around with Mom. I hope you pulling on your ear is nothing serious and you are O.K. Tell your Mom we will work something out when you come back home so that you can ride in the car. Maybe “Grandpa” will be your chauffer for a while. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!

Matt, Abby, Austin & Caed on April 10th, 2008 at 4:46 am #

Sometimes little ones (like us) have off days, sometimes several in a row. Hopefully that’s all that’s going on with Ella. She looks really good in the pictures (I really like her little sunglasses). It’s scary to think about having to take Ella somewhere in the car by yourself (I still get nervous when Abby has to take Caed somewhere by herself – and he doesn’t have the needs that Ella does) but like some of the others said in the other posts, I’d be willing to bet that there won’t be any shortage of people willing to help with this (or anything else you might need) once you get back to Denver. It can be hard to let people help you (especially if you’re an independant “I can handle it myself” kind of person) but it really blesses them as much as it helps you. I was looking back several months at the posts & pictures of Ella and I am absolutely amazed at how far the Lord has brought her (and you two). Scientifically, logically, statistically, medically speaking Ella should not be here. By the grace and love of God not only is she here but she’s getting mad at Mom and Dad for messing with her and not letting her sleep! What a testimony her life is…stay in God’s strength and walk in his word and He will continue to reveal His plan.

Marianne Tabor on April 10th, 2008 at 6:11 am #

I am a stranger to you, but have been keeping an eye on your sweet Ella’s story for a few months. I lost my grandaughter, Preslee, to CDH on September 12, 2007. We had her for 16 days. She was born Aug. 27, so she would have been about 1 month younger then Ella. It has been so very helpful in my healing process to watch little Ella grow each day. The main thing that I wanted to say to you today is that if I didn’t know your God, I would certainly do anything possible to get to know him after reading your posts. I believe your and Ella’s testimony is so huge! Little Preslee changed lives in her 16 short days and I can only imagine the lives that precious Ella will change throughout her life! God Bless your special family.

The Weir Family on April 10th, 2008 at 12:46 pm #

We haven’t posted in awhile, but we’ve been keeping up with sweet little Ella!! We’re so excited that you’re heading back to Denver soon!!

I wanted to respond to your fear about going “solo” in those scary moments. God will certainly grace you in those moments that you need Him most. I remember a number of times as a mom, that I was in a near panic dealing with twin toddlers and a three year old. As I think back, I could have easily had a meltdown!! (for example, twin #1 fell down the stairs injured eye lid and eyebrow, clearly needing stiches asap, twin #2 terrified because of blood, and three year old crying. No one is dressed and everyone needs to be in the car pronto — YIKES!!) However, the strangest thing would happen — I would have an incredible peace despite the intensity of the situation, a creative solution and a calm determination.) God ALWAYS graced me to do what needed to be done or bring a helpful relative or friend to meet my needs. I KNOW without a doubt that He will provide the same way for you. That awesome motherly instinct will kick in and you’ll have a plan for how to help Ella best!! I recognize that Ella has unique and special needs that put an extra demand on you as a mother. But I know — just from watching your journey — that He has also graced you both as parents with an extra measure of strength, wisdom and endurance to meet her needs. You’ll be amazed with what you’re able to do and how willing everyone is to help you. So be at peace — the provision WILL be there when you need it 🙂

The Whole Correia Family!!! on April 10th, 2008 at 12:59 pm #

Hi Guys,
Wow,Marianne Tabor’s post is amazing! Doesn’t that just humble and amaze you! I know God has big plans for little Ella!! Okay,let me just tell you…if you are looking for a professional chauffeur with TONS of experience taking five children to every place imaginable, I’m your girl!!! If only mom’s got paid for carting their kids around I would be a millionaire!! I would be so honored to be able to help out anytime you need me!! My “baby” goes to 1st grade soon and that will make me an empty nester from 9am to 4pm!!! Lots of time to run little Ella where ever she needs to go. I would love it!! I’ve been told I’m an “excellent driver”!!!!
Can’t wait to see you in beautiful CO!


Linda on April 10th, 2008 at 1:29 pm #

This if my first post. I work at the same school as Clay Brantley and Julie told me about the web site about two months ago. I have to have my Ella fix every day. I was on vacation last week and as soon as I returned home I got online and read everything from the week before (and also looked at the precious pictures.) You both seem to be such amazing parents with patience and nerves of steel. God is good and he gave Ella such wonderful parents. I was also amazed at Mrs. Tabor’s post. There are so many people universally who are praying for Ella and keeping up with her progress. I wish you the best over the next seven weeks and pray that everything will fall into place as far as getting everything set up for your return to Colorado. Good luck and God Bless.

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