Posted (jooosh) in All Posts on November-20-2008

Ella’s day was about like yesterday, maybe a bit less retching. Her Synagis shot was delivered today and the nurse will be administering it tomorrow.

Man…Tina has been gone less than 48 hours and I miss her tons. I’m so glad she’s able to take some time away, but I’m looking forward to her return.

It’s 8:30pm MST and Miss Ella has already fallen asleep. I’m about to do the same.

Thanks for keeping up with us. Your thoughts and prayers bless us in so many ways.

Love to all of you.

Posted (jooosh) in All Posts on November-19-2008

Tina is at a trade show for the next couple days so it’s just me, Kelly, and the Bun.

Overall Ella seems to be doing well, but she still is retching on a regular basis. It’s so hard to watch her go through these episodes. I hope with time they reduce in frequency, but we’ll just have to see.

The progress she’s making with physical therapy is encouraging. The Bun is definitely getting stronger…and man she’s getting bigger!!! I’m so glad to see her putting on true weight.

Ella reminds me every day of God’s amazing grace, his unconditional love, and his desire to have an intimate relationship with us. In reading through the book of Matthew, specifically Chapter 24, Christ speaks of his return and how we need to be ready:

Matthew 24:42-44 (NIV)
42 “Therefore keep watch, because you do not know on what day your Lord will come. 43 But understand this: If the owner of the house had known at what time of night the thief was coming, he would have kept watch and would not have let his house be broken into. 44 So you also must be ready, because the Son of Man will come at an hour when you do not expect him.

Our Lord will use whatever circumstances it takes to draw us close to him, even painful ones, so that we may be ready for his return.

Father God, we praise you for Ella’s story. She is perfectly made in your image, and we trust in your plan daily. Continue to strengthen and heal her body, and may her entire life be glorifying to you.

Thank you Jesus for not being standoffish, but instead, one who pursues a personal relationship with each of us. Draw us close to you during these days as we bare witness to so many signs that point to your return. Our peace comes from seeking you. You are the Almighty. Amen.

Posted (Tina) in All Posts on November-18-2008

Wow, look at those eyes!

Ella still retched throughout the day, a little less than yesterday, but still too often. Her mood seemed great throughout the day, but she did have 2 major meltdowns. Kelly shared that it has been a long time since that happened. When I write “major meltdowns”, I mean that Ella got so upset that she could not catch her breath and turned blue/purple. Those scary meltdowns where you are pleading with her to breathe and not pass out.

Part of it might be that she has been on less oxygen. If she starts to get just a little worked up and cannot catch her breath, she freaks out and goes over the top. She just downspirals. You can’t blame her. It is pretty scary to feel like you cannot get enough air. The only thing I can relate it to is when I thought I was going to drown once. Just that feeling…and at her age, not understanding.

Just on Sunday night, we switched her down to 750ccs of oxygen, down from 1 liter. And last night, I was able to turn her down to 625ccs when she was fast asleep. We think she is ready to be weaned on the oxygen, but I have noticed that she can be a bit touchy when we make that type of change (hey, it’s Ella, she doesn’t like any change).

I got a call from a new OT. She was going to try and come tomorrow, but that may not work out. If not, then she will visit for the first time next week. We’re hoping and praying for a good fit. We have not really found a good match from an OT perspective since we returned to Denver…and Ella is starting from scratch on the oral/feeding skills. Pray that this is a match!

Ella seemed in a good mood as she went through her PT session this afternoon. You can tell that she is getting stronger. I’m so glad that we have a great PT that cares about Ella and that Ella has gotten past her stranger anxiety so that the therapist can be more hands-on.

Her pulmonologist would like her to get labs early next week on Monday. It is always a challenge with our work schedules, but somehow we will get her to the blood lab. Our motivation is finding out where her levels are to see if we have gotten any closer to the perfect cocktail for the Bun.

Matthew 10:31 (NLT)
So don’t be afraid; you are more valuable to God than a whole flock of sparrows.

I gave Ella a bath tonight before putting her to sleep. I thought about how deep my love is for her. Then, I remembered this devotional and the verse above: “How much are sparrows worth? Not very much, but God knows when each one falls. How much are you worth? You have inestimable value in God’s eyes. When you feel hopeless, remember God knows you and deeply cares for you.”

As I lay down for sleep, I rest in that truth. I think about the inestimable value I feel for Ella and realize that can only be a fraction or small portion of how God feels about each of us.

Posted (Tina) in All Posts on November-17-2008

When I left for work this morning, Bun had already started her day…in her swing. It was good to see her in it again – she hasn’t used it since we moved.

Starting at 9:30am, Ella has PT on Monday mornings. It sounds like they had a good session and that she was having fun.

Her main ailments today: itching her nose and still retching a lot. Seriously, it is like it was before her recent hiatal hernia repair surgery. I’m hoping and praying that it is not that serious of a condition and that it is a short term thing, like maybe she is too wet or the secretions from teething are the culprit. Only time will tell.

We gave her only 1 dose of diuretic today, in the hopes that we can get her on a maintenance plan that will work.

Kelly is making sure to give her more time in her seat each day. This is really helping to build her overall strength.

Tonight, Benadryl cream gave some relief to her itchy nose. Thank goodness! And even though she was retching quite a bit, she found some comic relief in one of her favorite Baby Einstein videos. Gotta love that smile. That is going to carry me through the week!

Speaking of this week, please say a prayer for me, Josh and Kelly. I have my first business trip this week in Las Vegas. I will be gone Wednesday through Friday. The Bun, her Dad and Kelly will be on their own! For me, it is a great trip where I will have a chance to reconnect with a lot of my friends in the industry. However, I know that my contribution as far as taking care of the Bun will be missed, especially from Josh on the overnight shift. Just pray that everything will go smoothly and that Ella will start feeling better.

Romans 15:13 (New Living Translation)
I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.

Posted (Tina) in All Posts on November-16-2008

It was another day of Bun not feeling that great.

We decided to give 2 doses of diuretic again today (this is the third day in a row). We’re hoping that this continues to dry her out more. Her secretions are so thick. She is waking up throughout the night and spends a lot of the day retching on her secretions. The last time she started retching continuously, it meant that she was due for surgery. We’re not thinking that is the case this time, but it is a bit strange how all of a sudden this has picked up over the past few days. Is it that she is too wet? Is teething causing her secretions to be too thick? Is it something else?

We’re really not sure. Our plan right now is to try and maintain her diuretic by giving 1 dose per day and 2 doses every other day. Her pulmonologist would like her to get labs at the end of this week or early next week.

One thing is for sure: she amazes me. She has been retching all day and does not feel that great. And yet somehow, she finds the energy to still smile at me and Dad. I paused tonight and asked Josh if he was retching all day, would he do that?

Ella Renae…she teaches us lessons every day.

Psalm 118:1 (NIV)
Give thanks to the LORD, for he is good;
his love endures forever.

Posted (Tina) in All Posts on November-15-2008

Ella had a mellow day hanging out at the house.

Josh did some projects around the house. But first, he let me sleep in. You know that you are tired when you wake up at 11:30am. Normally, there is no way that I can sleep that long. Keep in mind that I am on night shift all week with Ella, including last night. And she has not been sleeping solid through the night. So between getting up throughout the night and working late each day, I was tired. Last night, she woke up about 4 times, but the fact that I did not have to get up and go to work…and that Josh let me catch some more zzz’s was a gift.

Ella received 2 doses of diuretic yesterday and today. Tomorrow, we will give it once and then 2 times per day every other day. We’re hoping this is the magic amount of diuretic.

Josh and I went to dinner tonight and ran some errands for our date night. It is such a blessing to be able to have a few hours together by ourselves each weekend. Kelly has no idea how awesome it is for her to watch Ella on Saturday nights so we can have this time. It is truly a gift.

Well, it is 10pm and all of us including Ella are ready to retire. We’re going to try and enjoy our last day of rest before the crazy week starts up again.

Psalm 119:1-7 (New Living Translation)

Joyful are people of integrity,
who follow the instructions of the Lord.
Joyful are those who obey his laws
and search for him with all their hearts.
They do not compromise with evil,
and they walk only in his paths.
You have charged us
to keep your commandments carefully.
Oh, that my actions would consistently
reflect your decrees!
Then I will not be ashamed
when I compare my life with your commands.
As I learn your righteous regulations,
I will thank you by living as I should!

Posted (Tina) in All Posts on November-14-2008

Ella felt better today.

When she woke up, it was the second night in a row that her diaper leaked. This usually indicates that she is more wet. When she is too dry, she will hardly pee or respond to the diuretic. But when she has fluid on board, the diuretic makes her pee extra.

We gave her a dose of diuretic this morning, so she had 2 doses today. We think that we need to go this route tomorrow too to help her go the right direction. After discussing with her pulmonologist, he recommended giving her 2 doses every other day (every day makes her too dry and once a day is not enough). We’re hoping that this provides the perfect cocktail.

The home nurse came this morning. Ella had slight weight gain, but not too much. She is now at 8.1 kilos or 17.8 pounds. She has gone from 7.9 kilos, to 8.0 kilos last week to 8.1 today. We’d like to see her gain more weight, so we might try adding corn oil to her feeds soon for that extra calorie boost.

It snowed for the first time at the house this year. It was not fun to drive to work. But in typical Denver style, most of it melted within a few hours.

I’m so thankful it is the weekend. I cannot wait to catch up on sleep! 🙂

Thank you for the thoughts and prayers from all of you.

Posted (Tina) in All Posts on November-13-2008

Ella did not have a great day.

Above, she was doing okay. This was around 10am this morning during physical therapy. But as the day continued, Kelly described her as being fussy. You could just tell that she wasn’t feeling well. Even when she was sleeping as seen at the bottom of the post, her face was showing distress.

We did get the results of her labs this morning. Her BUN was 17 which is too low. This means that we are going to increase her diuretic. Likely, we will increase it to 2x per day for the next 2 days to bring her back in the right direction. After that, we still need to decide if we want to try to give diuretic 2x per day, every other day or every third day. We’re also consulting with her pulmonologist to see which he wants to do and if we should get another set of labs in 2 weeks.

Thank God that tomorrow is Friday. It has been a crazy week at work for me and lots of late nights. I’m wiped out.

We hope and pray that Ella will feel better soon. It’s so hard to ride on this roller coaster. One day she is great and then 2 days later, she can be in a bad place. It’s so hard to know what to do for her.

Father, we life up Ella Renae to you in Jesus name. Lord, we ask that you would help her little body to operate in manner in which it should so that Ella can feel better. We praise you and thank you for our beautiful baby girl, the gift that she is to all of us. We ask for wisdom and discernment as her parents. Help us to know the right amount of medication to give Ella, so she can feel her best with minimal side effects. We thank you for Kelly and the blessing she has been to the West family. We ask that you would help each one of us to continually seek your face each day, so we can walk in obedience and follow your plan for our lives. Thank you for the many blessings that you bestow upon us. We’re forever grateful and we know that we don’t deserve it. Thank you again for the gift of faith and how you love us so much that you press us forward and push us into situations that might not be comfortable so our faith can continue to strengthen. Amen.

Isaiah 1:18-19
“Come now, let us reason together,”
says the LORD.
“Though your sins are like scarlet,
they shall be as white as snow;
though they are red as crimson,
they shall be like wool.

If you are willing and obedient,
you will eat the best from the land”

Posted (Tina) in All Posts on November-12-2008

Posted (Tina) in All Posts on November-11-2008

Ella had a good day.

It was a mellow day for Ella and Kelly. Normally, Tuesdays are packed with OT and PT. But, our physical therapist canceled the appointment today due to personal reasons (and will be back tomorrow morning). However, our occupational therapist emailed last night to let us know that she was dropping us as clients. The commute time is too long and not working for her. This is the same OT that was assigned to us back in Lone Tree. This house is 20 minutes in a different direction, so we weren’t sure if she was going to keep us or not. It sounds like after the past few weeks, she has decided to cancel. So, once again we are back to the drawing board looking for an OT that can help us get Ella to where she needs to be with feeding. My hope is that the process does not take too long (seems like it can take a long time to get reassigned).

Labs were this afternoon. Fortunately, we were able to find a location much closer to our house at a Children’s Hospital satellite office. Josh left work early to come home and take Ella for her labs. Of course, we forgot to move the car seat and stroller from my car, so he had to come visit me at work in the afternoon to retrieve it!

Ella did really well with her labs and it sounds like we got a “good stick”, so thank you for all your prayers! It was quick and although Ella let us know that she did not like it, she got over it really quick. Josh made sure to comment and let me know how impressed he was with Ella and her tolerating it. You figure after everything she has been through, getting labs are pretty minor! And I think she is dealing better with them because they are not every day like they used to be at the hospital, week after week. We probably will not know the lab results until Thursday. Josh is thinking that she must not be too dry because there were no issues drawing blood (sometimes it can be a bit tough if she is actually too dry).

On a totally different note, I listened to a great devotional this morning. Charles Stanley spoke about taking risks. When we think of risk, what do we mean? Most of the time it is the possibility of suffering loss or suffering danger and/or the possibility of having an ill outcome. The truth is: in order to understand risk, it is closely related to faith. Later it was asked, do you have one of those God inspired goals that feels too big, too complicated or seems beyond your abilities? When God tells us to do something, He will always provide the resources to get to the goal. So when we are relying on God, are we really taking a risk?

I could relate to the question about God-inspired goals that felt too big, too complicated and beyond my abilities. I thought about the risk of deciding to have Ella, as we obeyed God. We had no idea of the outcome and went all the way to Florida for her birth. That was a lot of risk and her life continues to be a testing of faith. And yet, look what God has done through her life – she has blessed all of us!

It made me think of my job that I just accepted and all the challenges that seem beyond my abilities. It seems overwhelming to balance everything. And yet, I feel like the Lord called me to this specific job at this specific company. So, I had to take a risk and I have to trust Him – trust that He will provide the resources, abilities, wisdom, and knowledge to help me accomplish what He wants.

It sure is nice to have a Savior who can provide that peace. I just can’t imagine living without Him.