Ella’s doing better than she was over the weekend.

Kelly and I took her in late this afternoon to have her blood drawn for labs. We had the same phlebotomist (Robert) as last time. He does well with Ella and so far he’s on a 2 for 2 roll. He drew blood from her left arm and was in and out in less than 30 seconds. Ella barely had enough time to get upset…but she did. She didn’t have a total meltdown, and she collected herself within a minute or so.

Usually when she can collect herself like this, it’s a sign of her doing better. Clinically the indicators are there, we’ll see what the results from the BMP show.

Wow…can you believe that the Bun is one year and four months old today! Boy do I love this kid. She is such a sweetheart.

Enjoy the pics of her cuteness.

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 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.

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 good…just got back from a date night dinner…I fell asleep in the car while Tina drove…

G’Night =)

Ella had a lot of mood swings today. One minute she would just be happy and talky, and the next she would really fuss. I’ve not seen this behavior before, and maybe it’s just her testing her limits.

We do think she is a bit more “wet” these days mostly based on her increased secretions and heart rate. We’re continuing the twice a day dose of the aldactizide diuretic until we see signs to convince us otherwise.

Tina is working late tonight. She’s had a lot going on at work. I have too with a project deadline yesterday that I pushed to get done. We’re both totally exhausted.

Kelly is pretty wiped too considering she’s had a migraine for the last couple days plus taking care of the Bun.

Because Tina is so slammed, I’ll be taking Ella to her pediatric appointment tomorrow afternoon. I’m hoping her weight has not significantly increased because it would probably be fluid.

Please pray that we can all get some much needed rest tonight and the Ella would ease into a more dry state.

Thanks for all the love, prayers, and support.

God Bless

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…

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.