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.

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!

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.

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.

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.

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.

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.

Ella was up half a dozen times last night, and her “numbers” were not that great. Her heart rate was in the 140s (normally 115ish) and her O2 saturation was in the mid 90s (normally 98-100) while in a deep sleep. At about 9:15 this morning, her heart rate was hovering around 180 (normally 150), even peaked around 190, and she was saturating in the upper 80’s (normally 95).

Her clinical behavior wasn’t indicating that she was in any pain, and she wasn’t overly fussy, but these numbers did not lie: Ella was not doing well.

I increased her O2 up to 1.5 liters and called her pulmonologist. It is so phenomenal to have access to this amazing doctor directly, and he always affirms how much he wants to help and be available.

After talking through Ella’s situation with him, he recommended that we give her a one time dose of the Bumex and then give Ella the Aldactizide twice a day, every day. I’m so glad we had the Bumex on hand. This is the incredibly strong loop diuretic that Ella was on for so long. We kept it so we could use it as a big gun to help us in these situations.

And as it turned out, it did. After administering the dose of Bumex, within 2 hours Ella filled her diaper up, so much so that it leaked out onto Kelly while she was holding her! (sorry Kelly)

Obviously Ella has excess fluid on board so we were glad to see this kind of output. She had another significant diaper a couple hours later as well.

The Bumex seemed to help because as of this evening, we’ve been able to turn her O2 down to a liter and her saturations are keeping in the upper 90s. Her heart rate has come down as well….Praise God.

We’re not out of the woods yet with this one, and we may have to give another dose of Bumex, but at least we can see that she’s going in the right direction.

Tina came home from her business trip tonight. It’s so great having her back. She’s pretty wiped out and is asleep next to me as I type this.

I have a couple prayer requests. Please pray that we can get Ella’s fluid balanced and she’ll start to dry out and feel better. It’s been very challenging to find the right mix of meds based on her current food intake, but I hope we figure it out soon so we don’t have to keep going through episodes like this morning.

My other prayer request is for the Bassett family. This family found us through Ella’s blog and shared that they were expecting twins. The heavy news is that one of the twins is a CDH baby. We referred them to Dr. Kays and today Jacy delivered baby Olivia and Mason via c-section at Shands. You can read about their journey here.

While we’re filled with joy for these precious children, our hearts are heavy for their journey ahead. It is such a roller coaster of emotions, but we know that through it all, God is in control and He holds both of these precious children in His almighty hands.

Heavenly Father…Thank you for the gift of life that is found in Olivia and Mason. We specifically lift Olivia up to you Lord. Please keep her stable, and let her lungs grow strong. I ask that your peace wash over Doug, Jacy, and their entire family. Draw them close to you during this difficult time. Give Dr. Kays wisdom and discernment for the next steps he should take. May your Grace and Mercy be with this family and may your love shine through to all who come in contact with them. Bless them Lord. In Jesus Holy name. Amen.

Ella’s day was rocky again.

We had to call the pulmonologist once more to ask for more direction. He advised to give another round of Bumex and go back to her aldactazide twice per day. It seems like when we give her the Bumex, she has significant urine output and her stats improve. But as the day continues, she trends in a not-so-good direction.

At this point, we’re not really sure what to think. She is asleep right now and doing okay but she could turn at any point. Last night, it felt like she was up all night. I went into her room 15-20 times. I’m hoping tonight is better.

The doctor did tell us that if she does not improve after this dose of Bumex, we might need to consider coming back to the hospital.

Please pray for Miss Ella. We want her to feel better and certainly do not want to go back to the hospital. And as always, she somehow manages to smile.

Psalm 120:1 (NLT)
I took my troubles to the Lord;
I cried out to him, and he answered my prayer.

Ella is still retching way too much. We’re not sure if she is still creating lots of secretions from teething or it is a “wet” thing. Tomorrow, we are supposed to get labs done. This will give an indication on her dosage of diuretic and whether she is in a good place or if we need to make more adjustments.

She is not sleeping well. Waking up several times each night is becoming typical. Last night, it was about 8 times. Typically, she wakes up coughing and retching. I try and give her something to drink, which doesn’t always work. Many times she can’t swallow any liquid without retching more. I think that retching has to be one of the worst side effects for Ella. I just cannot imagine doing that all the time, day and night.

The good news is that she seems to be maintaining on 1 liter of oxygen. We’re hoping things continue this direction. We’d really like to avoid the hospital.

With Thanksgiving around the corner, this verse comes to mind.

Psalm 100:4-5 (NIV)
Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.

For the LORD is good and his love endures forever;
his faithfulness continues through all generations.

As we struggle through the latest challenges with Ella’s care, we are reminded of His faithfulness. Just last year, Ella was recovering from surgery and was still intubated. Although we have our daily challenges, we praise Him for our baby girl and how far she has come on this journey.