Habakkuk 3:18-19
Yet I will rejoice in the LORD,
I will be joyful in God my Savior.

The Sovereign LORD is my strength;
he makes my feet like the feet of a deer,
he enables me to go on the heights.

The weekend went too fast.

We had a lot of things to do around the house which kept us on our toes. Although we did not finish the tasks at hand, we did get a lot completed. We look forward to finishing over the upcoming Fourth of July weekend.

Also, we ran errands and checked on our house for rent. We had 2 showings today that I am hoping will materialize. We just want the right renters in our house, so please continue to pray that He would give us discernment and wisdom for the right family to occupy our home.

Ella almost rolled over all the way today. You can tell that she is really trying to figure it out. Her head is just so heavy for her to lift, but she is close to it.

We purchased a new toy for Ella that we are going to try over the next few days. It is a bouncy chair that spins around. We are hoping that she will start to feel the pressure on her legs and push. Right now, her leg muscles are atrophied and really need to gain strength.

Also, Ella has her first PT appointment on Wednesday. We are looking forward to meeting her new PT.

On an ending note, I wanted to share the daily devotional that really resonated with me today.

Knowing God
by Charles Stanley

Most people want to be understood. We may have many acquaintances, but we need to feel “known” by those we love most. This also applies to how God views our relationship with Him. He knows our every thought. God can count the number of hairs on our head. We also should be learning His ways. How our Father thinks. What motivates Him. What His plan and purpose are.

Our obedience not only glorifies our heavenly Father; it’s also best for us. Following Jesus doesn’t eliminate pain. It also doesn’t ensure everything will happen as we would choose. But we have assurance the Lord loves us and has a plan for our lives. He gives us strength and stability to follow Him, no matter where His path may lead us. He’s truly a loving Father to give such goodness and kindness to His children.

It was another quiet day for me and Ella.

The weather was a bit cooler today so the Bun and I went for a walk to Super Target. We were not on a specific mission other than to get outside and enjoy the summer weather.

In the early afternoon, we had visitors. Bethany and Ryan, who work in full time ministry at the University of Washington, and are soon to be married, stopped by. It was nice to have a heart-to-heart and pray together.

Ella did have 2 rounds of really bad gas this evening. It required increasing her oxygen and venting her via the g-tube. The first time was so bad that she literally pushed all of her food from the prior feeding out through the tube. She was crying so hard, so I know it must have been painful.

As soon as Josh got home from work, he gave me a 2 hour break this evening. I simply went to run some errands. It was not completely “me” time, but it felt good to get out of the house.

In sharing more of the details of our journey today, I am reminded that we can trust in Him to lead us and guide us. He promises to take care of us. That was the overriding theme of our Gainesville experience and it has not stopped since we have been home.

It does not make the day-to-day experience any less challenging, but the peace can come from knowing that He has a plan and that He will always take care of us.

Psalm 9:9-10
The LORD is a refuge for the oppressed,
a stronghold in times of trouble.

Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

Today was a rough day for me, for some reason. It was the same routine of sitting at home with Ella, but the weight of everything was hitting me.

Please pray for all of us. Pray for Josh in his work situation, that he can stay focused and energized for his role. For me, that I will find peace and sanity in my solo role at home. And pray for Ella: that she will gain weight, get stronger and make progress with her physical and developmental challenges.

As soon as Josh got home and we ate dinner, the Bun decided that she wanted to go down for a nap. This is not that strange considering that she did not nap much today.

A little bit later, we decided to try and wake her up for the rest of the night…and she rebelled. So, we let her continue to rest while we enjoyed the sun setting off the front patio.

She sure enjoys her beauty sleep…

It was another quiet day.

The new OT called to schedule. The first available appointment is Thursday, July 10th. We have some friends coming into town on that day, but it was the only time that week that was open in her schedule. Once again, I’m just hoping that it is a good fit.

The only highlight was having Grandpa come by to visit. He hung out with us for a few hours.

In between taking a look at the Bun and her blue eyes, he had to play the Wii. He wanted to practice for the next time that Josh takes him up on some games. This was Grandpa’s first take at the Wii. It was sure cute to see him moving around the living room, getting into the various sport games. Bummer that I did not have the camera ready for those moments…

But as always, I had the camera ready for the Bun.

For such a great milestone, today was a quiet celebration.

Josh stayed at work late tonight, so it has been a long and simple day at home for just me and the Bun.

As her shirt says, she’s definitely daddy’s little princess.

Ella went to the pediatrician today. It was the first follow-up appointment since we interviewed doctors the first week of June. Our appointment was at the end of the day in case we needed extra time.

Since she was going to go see Dr. Perry, she had to put on her cute outfit. If you remember, this is the outfit that Grandma Eusey brought her during a recent visit.

Thankfully, getting to the pediatrician’s office was not a problem. Ever since we switched her car seat to the front, it has been so much better driving in the car. I’m so glad that we found a workable solution! She sees me and handles herself so much better. Plus, it is lots easier to stick those nose cannulas back if she decides to play with them.

Nurse Holly was welcoming and did her initial stats. Ella measured at 26.5″ long and weighed in at 14 lbs, 11 oz which is about a pound heavier than what she weighed 3 weeks ago. That is really good progress for her. I’m sure that between the apple juice she is consuming plus the increased calorie formula is helping with her weight gain. This was the first time that we used the scale in this office, so we won’t really have a baseline for weight gain until next time.

Ella was in a fantastic mood and we had a great visit with Dr. Perry. We spent a lot of time catching up on all of Ella’s status from her appointments at the Children’s Hospital: oxygen decrease, medication increase, food/caloric increase, her blood lab work, her echo, OT/PT status, swallow study, etc, etc, etc. After catching up on all the details, this is what changed. He increased her volume of food to 650ccs of Alimentum daily, an increase of 25ccs overall. He gave the indication that he will likely increase it again in another month. He wants her to be getting more calories, but we will take it slow. Also, he gave us an refill script for Reglan, which helps her digest food. Dr Perry requested that we call and schedule a hearing test at the Children’s Hospital. Since babies that go on ECMO are likely to have hearing loss, this is something that we will need to monitor closely. He wants to see her again in a month, for her 12 month check up and vaccinations.

Overall, he thought she looked great. He did state that if we can make it another year without her getting sick, it would be fantastic for her. So, he gave the indication that it would be good to continue to be cautious with her for at least another year, until after she is 2 years old.

We are trying to get approved for private, skilled nursing hours. This could be someone that comes to the house once or twice a week to help me out. We should know within the next few weeks.

I played phone tag this evening with a new PT. I’m just hoping and praying that it is a good fit for Ella. She needs so much help in this area. On the voicemail, it looks like the middle of next week will be the soonest that we might be able to start up again. We were so spoiled in Gainesville with an amazing PT. It is going to be tough to find someone that is not only talented, but someone that really cares for Ella. When you have that combination, it can be rewarding for everyone involved.

Tonight we have a pulse oximeter test scheduled. This is something that Dr. Abman ordered. Apria dropped off a different machine to us this morning. It will track her saturations and heart rate throughout the night, then they download the data and fax it to the pulmonologist tomorrow.

I think the increase in sildenifil (aka. Viagra) is making a huge difference. As of the other night, her oxygen went down to 250ccs when she was asleep and 500ccs when she is awake. After this test, we will hear back from Dr. Abman to see if he wants to make any further changes to her oxygen. I have a feeling that he may want her oxygen lower since she seems to be saturating pretty well at night.

While waiting in the doctor’s office, I was watching Ella smile and kick. She looked so happy. Looking at her is surreal. I still have a hard time believing everything all of us have come through this past year.

She is such a blessing and has such a sweet spirit. And that smile…it just melts my heart.

Praise Jesus we’re home in Colorado. Thank God for our precious miracle of a child. She is so wonderful, and has such an amazing spirit. God knew what he was doing when he created her. We know our Lord is in control. You can’t come through what we have and not believe in miracles or the sovereignty of God. The fact that I can sit here, write this, and my baby girl is next to me just blows my mind.

Tina is off running some errands and I’m hanging out with the Bun. It is impressive to see how far Ella has come, considering all she’s been through, but…

There are moments where it’s tough to see my almost 11 month old baby still not able to roll onto her tummy on her own, or to sit up on her own, or to crawl, or to do all the things a “normal” 11 month old should be doing. I know that even “normal” babies don’t always keep on track, and I know she will eventually gain the strength to do these things. I don’t say this as if I’ve lost perspective of what she’s been through, or to make people feel sorry for us. I’m just being honest about where we are right now because our posts don’t always reflect how we’re doing at this level.

When you see your friends babies progressing at a steady pace, and people ask if Ella is doing such and such, it reinforces the fact of how much further she will have to go to catch up. I can always look and say that someone has it worse, because I know that many do, but I’m just talking about where we are right now and our desire to see Ella make steady progress forward. She is making progress…it’s just very, VERY slow.

I guess the bottom line is: I just want the very best for my girl…it’s hard to see her struggle.

Even getting into a routine at home has been difficult. I wish I could be around more to help Tina during the week and to keep her and the Bun company. To this day, it can still be overwhelming for me to be with Ella alone for extended periods. Of course, Ella’s mood plays into this a lot, but this is Tina’s full-time job and it’s hard for me to fully grasp the impact that taking care of Ella has on her.

And let me affirm, like I have before, that Tina is an amazing wife and mother. Those of you that know Tina understand that she was not cast out of the “suzie-home-maker” mold. God has blessed her with incredible talents that have served her so well in the business world. This is why I am so impressed, even proud, of how Tina has taken care of Ella. She is sooooo patient with her, so loving, and so caring. She has such phenomenal intuition as to Ella’s needs and does so much to make sure all of them are met.

Not only is there a good amount to do when it comes to fulfilling Ella’s needs (i.e. medications, g-tube feedings, dealing with oxygen, managing doctors, plus the normal baby things, etc.), the things that most moms can do to bring balance to their lives (i.e. escaping to the mall, connecting with other moms in the neighborhood, etc.), Tina can’t do because of Ella’s risk of infection. This means not being around other children, and being selective of her exposure to public places. Keep in mind that a simple common cold could put Ella back in the hospital, and something like RSV could be fatal (these germs can easily be spread through the air by someone sneezing or coughing).

We don’t know exactly when we’ll be able to expose Ella more: A very conservative approach would be 4 years, less would be 2 years. This will be an area where Tina and I will pray for wisdom. In the mean time, we need to be so careful, which makes doing a lot of “normal” things very tough.

So this is a different kind of tough…not being in a level 3 NICU for 6 months tough, but still tough.

Even through the times that stretch us, we know that He’s in control, but it doesn’t make the experience any easier. That’s part of the challenge…living out your faith even through the emotions and the circumstances.

We thank Him that we are rewarded every day with her sweet smiles. We are so blessed to have the gift that is Ella Renae.

It was a gorgeous day in Colorado so we decided to plant some flowers. It was another step towards settling into our Colorado home.

And while we planted flowers, the Bun decided to catch some zzzs…