Dr. Abman, Ella’s pulmonologist, called with the results from her overnight pulse oximetry test. Her oxygen was at 1/4 liter (250ccs) and the results looked great. He mentioned that the test is a good measure for us to use on her progress and that we will likely do more of them. For now, he would like to keep her at this level of oxygen. I made him aware that she was using a higher level of oxygen during the day. He wants us to wean her daytime oxygen to meet the 250ccs and simply raise the level if needed. But he thinks that she should be able to use the same amount during the day and night, for the most part. So, we are slowly working towards 250ccs all the time.

Only looking back a month ago, we had just arrived in Denver. Ella’s oxygen levels were much higher. Praise God that she has adjusted to the altitude quickly and that her new pulmonologist has given her an increase in the medicine that is helping her heart and lungs to work together more effectively.

It was nice because Josh’s work closed up shop in the afternoon for the holiday so he was able to come home earlier than expected.

We had Grandpa over for dinner tonight and afterwards the fun began! Ella and I played together on her mat while Josh and Grandpa picked up the Wii remotes and started playing virtual golf in the living room. And of course, each time that Josh or Grandpa would do just the right amount of strokes, the big screen would show in huge letters “Par”. It was hard not to think of Ella’s NICU friend, Par, and how well he is doing lately. It just brought a huge smile. Someday those two will have a reunion…

Ella met her new physical therapist today. Although we did not get a lot of work done, it did give us a chance to meet her.

At first, Ella was fine. Once some of the work began (we were showing her what we worked on during our sessions in Florida), Ella started to figure out what was going on. She decided that she didn’t like it, so all it would take was a glance at the PT and she would melt down.

Overall, Ella did much better than I have seen her do in the past with new therapists. Even though she had her temper tantrums, it took a lot less time for her to calm down. Hey, that is a step in the right direction.

I am excited because it seems like we may have met someone that not only knows physical therapy, but is truly interested in seeing Ella take the next steps. Once we get into the true visits each week with more focused therapy, we will see how the Bun responds.

And finally, Ella had to try on some new shoes that Grandma West sent her. Cute for the summer time…

Ella had her first eye exam today. It went well. She enjoyed the first part of the exam, especially when she had to track the finger puppet that was a bumble bee. She even gave a few smiles here and there.

Once the drops went into her eyes to dilate them, she lost it. After I got her settled which took about 15 minutes, she was good for a few more peeks into her eyes with the bright light. Then, she let me know that once and for all, she was over the eye exam concept. It was no longer fun for her.

The good news is that her eyes look healthy and there are no issues right now. This was great to hear, especially considering that she has been on oxygen since birth. Initially, the eye doctor was concerned about the cornea, retina and blood vessels. But everything checked out great!

One thing is for sure, her navy blue paisley dress sure made her blue eyes stand out!

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.

Although we desire to know the Lord’s mind, He makes it quite clear that this is impossible. In Isaiah 55:9, He tells us, “As the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts.”

This is why God gives us His Spirit. The Holy Spirit can teach us and reveal what we otherwise couldn’t understand. Growing in this spiritual understanding is necessary to have a deep personal relationship with God. We must know His ways before we can walk in them.

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.