Yes…Ella has had some kind of cold, but the good news is that it’s staying in her head, she’s not running a fever, and boy…she’s still in a great mood. Just gotta watch out for the snotty sneezes. It also sounds like it’s been tapering off since this afternoon.

It just affirms how much Ella’s clinical behavior indicates how she’s really doing. The fact that she’s so smiley, babbling, and being herself lets us know that this cold hasn’t really got her down. If she’s not feeling well, you can tell by her body language.

My sickness has subsided a bit, but now Kelly and Tina are both feeling it. We’re just hoping that all of us don’t impact Ella too much.

Tina and I enjoyed a date night this evening while Kelly watched our girl. We escaped to an Avalanche hockey game and what a thriller. It tied up 1-1 and went into overtime. Then, it tied in overtime, so it went to a shootout. Back and forth 5 times, and we pulled it out! My voice is hoarse from screaming my head off =).

It’s nice to get away like this, giving us a break from the heaviness that can be our life. But once we do step away and get some perspective, it tends to emphasize just how overwhelming life has been these days.

What I do know is that we could not have come through, and continue to go through, what we have experienced without our faith in our Savior. Having a personal relationship with Jesus and trusting in him doesn’t guarantee an easy life, but it does offer a peace through times like these that could not be had otherwise.

Thank you Jesus for your unconditional love, mercy, and grace. You are worthy of our praise at all times, and through all circumstances. Thank you for the gift of Ella Renae. We pray that her life and ours will be glorifying to you on a daily basis. May your Spirit work through us as we surrender our will to you. Praise you Jesus! Amen

John 14:1 (NLT)
Don’t let your hearts be troubled. Trust in God, and trust also in me.

Ella had a good day. She is still fighting her cold – – we’ve used lots of kleenex and wipes for her nose.

Today was spent unpacking more and get settled into the house. It was a day of organizing, cleaning and sorting. Ella spent time watching Barbie and Little Pony’s while she sat up in her chair.

Grandma Eusey came this evening. We gave Ella a bath and she spent time rocking Ella to sleep. Grandma looked like she had died and gone to heaven while she kissed on the Bun.

Ella seems to be tolerating the continuous food at a rate of 29ccs really well. We will likely wait 1-2 more days before we try the next increase.

Kelly is still in the midst of her sickness, while Josh and I are trying to battle our symptoms. Hopefully, we don’t get Grandma sick and all of us can be on the mend soon.

Grandma is going to help unpack and get the house even more settled. Next week, I will start my new job. So, I’m trying to make the most of my time off!

We love Ella Renae. She is such a blessing and provides a clear reminder of His love for us.

Psalm 18:1
I love you, O LORD, my strength.

Ella didn’t seem to feel as good today. She seemed to be coughing and sleeping more than usual.

In the morning, she was acting like herself while she played on the mat. But then, she seemed to get tired easily and would have a change of mood with no real warning. The afternoon was harder. She was resting during the 2pm hour when the PT arrived. So Kelly tried to wake her up and coax her into a PT session. First, she seemed okay and then she simply decided that she did not want to have anything to do with PT. After a major meltdown and lots of cuddling with Kelly, she went back to sleep.

We’re hoping and praying that the sickness subsides and does not get worse. So far, it appears to all be in her head area versus her chest and lungs. This is much better, but not ideal.

Sometimes it just hits me and I wish I could make it all go away for her. It just seems like she rarely ever gets a break. It always seems to be some medical condition that is ailing her.

Her increased food seems to be going well. We increased to 29ccs per hour (24 kcal) last Friday. I’m thinking we might try increasing soon, maybe tomorrow. We’ll see how she does tonight.

When she had enough of the day and decided to retire, Grandma Eusey was there to cuddle and rock her to sleep.

1 Peter 5:7 (Amplified Bible)
Casting the whole of your care [all your anxieties, all your worries, all your concerns], once and for all on Him, for He cares for you affectionately and cares about you watchfully.

I’m thinking Ella is doing a little better today. Not quite as snotty, and her cough doesn’t sound as bad.

I’m hoping a good nights rest will let Ella and me kill off our colds. Kelly is still fighting hers, but we’ll see how she is in the morning. Tina and Grandma Mary have avoided getting sick. They spent the evening at our sweet neighbors house enjoying some homemade Mexican food. Tina brought Kelly and me a couple plates over before they left us. Thanks for the dinner Estela!

Praying that those of us that aren’t sick don’t get sick, and the ones that are get better soon.

As Ella went to sleep, Tina increased her rate of food to 31ccs per hour. We’ll see how she does overnight and into tomorrow. This brings her overall volume to 744ccs, only 24ccs below her goal. However, the biggest difference is that she is on a lower calorie formula. Once she can tolerate the volume, we can work on the density of the food.

I’m fading, so I’m going to join my child and beautiful wife in sleep. G’Night…

Ella was feeling better today. Her cold is still hanging on, but you could just tell that she was feeling more like herself. I mean, she even kept adjusting her headband to an 80’s aerobic style. If she keeps up the foot grabbing too, she’s going to turn into an Olivia Newton John look-alike.

The PT session went great. Ella practiced sitting up, rolling over and having tummy time – – all things that will help build her core strength. Once again, we’re feeling so blessed that we have a great PT that understands Ella and has a sincere desire to help her reach her goals. That is a rare find.

Today, Grandma Eusey altered Ella’s halloween costume, so it can accommodate her g-tube. Nope, we can’t ruin the surprise. You’ll have to wait to see the Bun dressed up!

We know of another family that has arrived in Gainesville to have Dr. Kays help save the life of their baby with CDH. Please pray for their baby girl and her brother (twins) that are due to arrive in December (You can read their story here).

I ran into an inspirational devotional message this morning regarding burdens and I wanted to share an excerpt:

Our challenges vary greatly: a single Christian mom may have the awesome responsibility of raising children in an ungodly world that seeks to destroy them; an angry misunderstanding may leave the head of a household without a job; or a past sin can result in deep scars of guilt that weigh a person down. Regardless of the type of problem or its source, the question is, How are we to handle the burdens that come our way?

Oftentimes, the difficulties God has sent or allowed in my life have been so unpleasant that I prayed He would remove them. However, when I looked back later and realized all that my suffering had taught me about the Lord, I prayed, “Thank You that You knew better than I did. Thank You for not making it easy.”

Psalm 55:22 (NLT)
Give your burdens to the Lord,
and he will take care of you.

Ella seemed to be doing a bit better today. Although she was not that excited to wear a Halloween costume. She could tell that she was getting lots of attention by her outfit, but I think it was uncomfortable. Ella loves to grab her feet and kick. The outfit made it tough to do her daily foot kicking exercises.

The home nurse came to listen to her. She affirmed that Ella has good air flow and that the upper airway congestion persists, but it was better than last Friday. That was reassuring. Also, Ella weighed in at 7.9 kilos (17.7 lbs), an increase from 7.7 kilos last Friday. Weight gain is good for Ella. It confirms that the increase in volume of food is helping. Now, we just need to make sure that it is a good weight gain. As we put her to bed tonight, her heart rate did seem a bit higher than normal. Again, we are hoping it was good weight gain and not fluid retention.

The occupational therapist visited today and it was a successful session for Ella as she sat in her chair for 45 minutes. She already made progress from last week, simply with all if us playing around her mouth more and making her drink diluted juice again. Progress is slow, but Ella is following the same pattern as last time in Gainesville.

The rate of 31ccs per hour on a continuous feed seems to be going well. We are going to stick with that volume for a few more days before we try increasing the volume more. Our goal of 32 ccs per hour is not far off, although we were supposed to be using 26 kcal and we are only using 24 kcal. I’m hoping that adding corn oil will do the trick. Once we can see some solid weight gain on 32ccs at 24 kcal formula, we can try working towards bolus feeds.

We are scheduled to see the pediatrician next week. That will be good to see Dr. Perry again. It has been a long time.

I couldn’t believe that it was Halloween today…mostly because it was 70 degrees and sunny. It is usually bitter cold and/or snowing on Halloween in Denver. I am so thankful for the last few days of sunshine. I’m not mentally ready for snow, but I know it is around the corner.

Ephesians 3:20 (The Message)
God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.

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.

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.