Ella had a great day with Kelly.

The rate on her food pump was increased to 32ccs per hour and there were no problems. It is so good to know that we are at her volume goal for food. Now, we just need to figure out the right amount of diuretic. Eventually we may add corn oil to her nightly feeds again, just to give her some more calories.

Tomorrow, Josh and Kelly will be taking the Bun to get labs toward the end of the day. We’re going to try and go to a facility that is closer to our home. I’m hoping everything goes smooth and that we find a “good stick”. It is so hard to take Ella for something that she dislikes so much and to have multiple sticks or more drama than necessary, just makes it that much harder. Please pray that labs will go smoothly for all involved.

When I got home tonight, Ella was in a great mood. I had a good time hanging out and tickling her. It was making her kick, squirm and laugh. I miss being with her each day, but I have already enjoyed the break during the day (work) and coming home to see her. Ella is making me feel recharged, which did not used to be the case. I love it.

Praying each day for strength from above…strength to trust and believe that He has a plan for our lives. He has orchestrated every detail. Ella is such a fantastic reminder of this truth.

Psalm 62:8 (NIV)
Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.

Yep, it happened. Some of you might have been looking for this post…and it wasn’t there last night or very early this morning. For the first time ever, the photo and video were ready for all to share. And I simply went to bed and forgot!

In any case, Ella had an uneventful weekend which is good for her. She doesn’t seem 100%. It’s so hard to determine now if Ella is too wet or too dry. We just know that she is not in her prime zone. She has had lots of secretions which has prompted more retching. And you can get her to smile, but at the same time, you can tell she doesn’t feel her best.

We need to get labs done by tomorrow, so we can see where she is at from a wet/dry standpoint. I’m not sure it will really answer any questions or tell us what to do different. She did seem like she was too wet, so we increased the diuretic. Then, it almost seemed like she got too dry so we backed down on it again. Likely, it probably means that we have not come up with the correct cocktail for her diuretic. Poor Ella, it seems to be an up and down roller coaster for her too! And when she is on either side, she doesn’t feel great. We’ll take being too dry over too wet, but right in the middle would be great!

We tried increasing her food rate 1cc/hour on Saturday. I mean, 1 cc per hour should not have much impact. Yet, I’m not sure if Ella knew we changed the rate on the food pump. She seemed like she was not comfortable and retching a lot more. Again, maybe that was bad timing with other things going on. We will likely try again soon.

On a positive note, she was in a good mood last night. It’s nice to know that a simple game of “boo” can still make her happy. Now, it is cute because she is starting to laugh!

We’re excited to start another week to see what God has planned in our lives. Sometimes it’s so easy to look at the waves in life and get distracted by them…instead of looking at the person who created the waves and drawing close. That is our desire as we start a new week: to praise Him for all He has blessed us with and to know that He orchestrates every challenge in our lives for a specific purpose.

Enjoy watching Ella with her laughs…it’s sure to brighten any day!

Ella’s good…just got back from a date night dinner…I fell asleep in the car while Tina drove…

G’Night =)

Today was busy.

Ella weighed in with the weekly in-home nurse at 8.01 kilos versus the 7.92 that she was last week. I want her to gain weight but would be concerned if I noted a spike in weight gain.

Josh took Ella Bun to the pediatrician today. They had a good time playing in the car. It was the first time Dr. Perry had seen Ella since before her recent addition to the hospital.

Dr. Perry thought she looked great and wants to see he again in another 6 weeks.

Sorry, falling asleep as I type this post…

Ella had a lot of mood swings today. One minute she would just be happy and talky, and the next she would really fuss. I’ve not seen this behavior before, and maybe it’s just her testing her limits.

We do think she is a bit more “wet” these days mostly based on her increased secretions and heart rate. We’re continuing the twice a day dose of the aldactizide diuretic until we see signs to convince us otherwise.

Tina is working late tonight. She’s had a lot going on at work. I have too with a project deadline yesterday that I pushed to get done. We’re both totally exhausted.

Kelly is pretty wiped too considering she’s had a migraine for the last couple days plus taking care of the Bun.

Because Tina is so slammed, I’ll be taking Ella to her pediatric appointment tomorrow afternoon. I’m hoping her weight has not significantly increased because it would probably be fluid.

Please pray that we can all get some much needed rest tonight and the Ella would ease into a more dry state.

Thanks for all the love, prayers, and support.

God Bless

Ella had a great day with Kelly. It was a full day with occupational therapy and physical therapy. And in-between, the weather was still nice outside so her and Kelly took a stroll.

Occupational therapy went well. While having Ella sit up in her chair, the focus was still centered about the basics like getting Ella to tolerate different textures around her mouth. For example, she does not like a warm, wet washcloth applied to her cheek (she pulled away and began to cry). She is protective on her face and especially her mouth area. The OT recommended doing this exercise heavily during bath time.

Today, Kelly tried giving cran-rasp juice on the binky (2:1 ratio). She seemed to tolerate. Then, they gave the cran-rasp in a bottle and she took about 3 gulps. It was something different than apple juice, so I’m happy she seemed to tolerate it. The plan is to alternate between binky and bottle with apple juice and cran-rasp juice to up flavors and textures. Also, to continue time in her chair and tilt up to 90 degrees slowly until tolerated.

On the physical therapy front, she recommended that we begin to change Ella’s point of view or position when she is playing on her mat. Also, to experiment with different positions to get Ella’s visual input horizontal. It is exciting to hear about the new recommended exercises. It just means that Ella is moving forward.

We thought Ella might be getting too wet, so we have given 2x day doses of Aldactazide (diuretic) for the past few days. I’m convinced that it is helping and I see trends that she is moving in the right direction. When I laid her down for sleep, her beats per minute were around 150 which is normal. And we will be watching to see if she dips back down to 105-120 when she is sound asleep.

One thing is for sure: she is cute. She has not lost any of that noise!

Thank you for the support and prayers. It means so much to know that there are others that are lifting our family up in prayer.

Psalm 119: 10-12
I seek you with all my heart;
do not let me stray from your commands.

Praise be to you, O LORD;
teach me your decrees.

Ella had a good day.

We think that the extra diuretic might be helping to send her in a good direction. Her baseline is 105-120 beats per minute in a deep sleep. Her heart rate last night in a deep sleep was 140ish. Tonight it is 130ish. At least it is going the right way. Clinically, Kelly said that she had a great day and that it improved as the day went on.

On another note, Kelly is doing a great job of making sure that Ella has her exercises each day and it is already beginning to show. Plus, a dedicated physical therapist is making a huge impact. Can you believe she is sitting on her tummy with no assistance, with weight on her elbows? Just to give perspective, that is huge for Ella!

Also, you cannot see from the photos but Ella has two teeth that have broken through on the bottom (you might be able to tell from the first picture at the top of the post). Her left one came in first and now the right side has joined! We’re hoping we can overcome some of the oral aversions so we can begin to take care of the pearly whites!

In case you were wondering, I had no issues going to work today and leaving Ella with the nanny. My challenge came from the job that I feel God has called me to. It was a rough first day: it is going to take a lot of hours and extra work to do a great job. I am ready for that challenge, but it left me feeling exhausted. Please pray that regardless of the obstacles that are before me, that I can be reminded of truth: God has put me in this place and my job is to honor Him in my work. I need to work as if I am working unto Him.

Some of you commented that maybe I would be posting earlier and going to bed earlier. Not sure that is really going to happen. And that is another concern of mine: I felt like life was crazy and busy in the first place. Now, I am even more concerned about balance with it all. Just pray for me – If nothing else, this reminds me of the past 18 months. I cannot fathom being able to do everything I need to do and be everything I need to be – wife, mother and employee. I literally have to rely on Him. This is the same lesson from all these prior months. Leaning on Him for wisdom, guidance and direction. Above all else, obey and leave the consequences to Him.

This morning, I was reminded by a devotion that we are fearfully and wonderfully made. We are His crown creation – human beings are the most important of all of God’s creations. He loves and cherishes each of us.

As I wander off to slumber, I’m thankful for all He has provided and continue to praise Him for our baby girl. She is evidence in my life that we are each fearfully and wonderfully made and that there are no accidents with God. He has a plan and purpose for all of it.

Psalm 139:14-16 (NIV)
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Grandma Eusey left yesterday. The Bun misses her already.

And we gained one hour of sleep this morning…or we should have gained an extra hour of sleep. Didn’t Ella get the memo?

Aside from sleep on this Sunday, Ella is healing from her cold. She is still snarfy with a snotty nose and coughing here and there. On another note, it does seem like she might have more fluid on board. Three indicators: higher heart rate, labored breathing and increased weight gain. She does not normally gain weight as quick as she did over the past week. To try and fight it off, we have increased her dose of diuretic to twice per day. The coming days will be telling.

Although I wish I had another week before starting work, I can’t believe that I start tomorrow. It’s going to be strange to not only have a job again, but one where I have to drive to an office. I was blessed to telecommute for nearly 7 years at my prior job. I’m hoping and praying for wisdom, guidance and strength as I embark on this new chapter of my life. It is going to take a lot out of me and require an adjustment to balance work & home life.

Along with this huge change in our personal lives, we have an election this week. I have encouraged every person that I know to vote. Here is what the Lord tells us: “Everyone must submit himself to the governing authorities, for there is no authority except that which God has established. The authorities that exist have been established by God.”– Romans 13:1

One thing is for sure: Times may be uncertain, but God will never change. He is the same yesterday, today and forever. It’s sure nice to know that our Savior’s love for us won’t change, and we can have full security in Him, regardless of what our eyes may see.

Thank you for all the prayer support. It means so much as we continue on this journey of life with Ella Renae.