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 had an active day.

Aside from hanging out with Kelly, her new OT came by for a visit. Kelly had nothing but amazing things to say about her. We’re excited that she has been assigned to Ella. She gave off the impression that she really wants to help Ella. That is one of the most important aspects of a therapist in Ella’s life: someone that really cares and wants to help her make steady progress.

She had lots of great ideas to share about tips to implement that might help Ella. Some things are just technique and practice while she also recommended that we purchase a few tools. When I came home and read the progress notes, it makes me realize how behind Ella is with her feeding skills. We made so much progress in Gainesville and yet, now it seems like Ella’s oral aversion is stronger than it ever was before. It just means that we have lots of work ahead of us. And just like her health issues, you take a ten steps forward and several back. Yet, your net gain is still there. Hopefully, we can get a consistent OT therapist and begin moving consistently in the right direction.

As we have shared, we know we are blessed with a great PT. Now, we think we may have found our match for an OT. Heck, we already felt connected before she walked in the door. She is from Southern CA and just moved from Rancho Santa Margarita. We used to live in Ladera Ranch just down the street.

Later in the day, the PT showed up for physical therapy, but Ella decided that she was done working for the day. We’re so fortunate that Ella has multiple sessions each week, so that she can have these off days and it doesn’t delay her progression too much.

We did not hear about labs today. That is a bit annoying. We want to know so that we can adjust her medicines, if needed. We’re hoping for some correspondence tomorrow before the holiday weekend.

Once again, I still can’t believe that it is Thanksgiving week. It’s crazy. It is amazing to think that Ella was in the NICU last year. She was hanging out with her boyfriend Par who was near her crib. And I’ll never forget when Par made matching hats for him and Ella to sport on that glorious day.

Also, it makes me reflect on the special NICU nurse that opened up her home to us so that we could partake in a home-cooked Thanksgiving meal while we were away from our family. Although it was a different Thanksgiving, it is one we will never forget.

Hebrews 12:28 (NIV)
Therefore, since we are receiving a kingdom that cannot be shaken, let us be thankful, and so worship God acceptably with reverence and awe.

Ella had a great day.

She seems like she is feeling a lot better. We called Dr. Perry so he could look up the lab results for us. On Monday when the labs were done, her BUN was 31. This is definitely more on the dry side. We’ve continued to give the aldactazide twice per day. She is peeing less too, so I think she might even be a touch more dry than Monday.

For whatever reason, it seems like she does best when her BUN range is in the 30’s these days. In other words, running very dry. If you remember, her BUN was 37 when she was discharged from the hospital. Because she was doing so well clinically, the doctors were not overly concerned about it.

It is amazing to see the turnaround in her behavior clinically since last Friday. Man, when we use the Bumex now, it really hits her system and dries her out. And to think that we were giving it twice per day for months and that her body had acclimated and it stopped working. Wow. We’re so thankful that we are not having to use as many diuretics to get the same impact.

When I came home, Ella was so happy and smiley. She is still retching quite a bit, but she is so much happier overall. I hope it lasts through the holiday week. It would be nice to spend some quality time with Ella while she is feeling good.

Kelly left tonight to go and visit her family for the holidays. So it is just the three of us in our home. It should be a nice few days of relaxation. Now I just hope that Ella will sleep at night…that would be awesome!

Grandpa is coming over tomorrow in the morning to hang out for the day and help cook Thanksgiving dinner. It should be fun. He’s bringing the dogs too. They have not been to this house in months. It should be a bit crazy with the dogs chasing the cats around the house. I’m not sure that Pumps and Macy will appreciate having the dogs over for Thanksgiving, but it should make them thankful that they are not in the house all the time to chase them around!

Please pray for Ella’s continued health and that tomorrow is a blessed day of rejoicing and thanksgiving for all families and friends.

The day after Thanksgiving. No shopping planned for today although I called my neighbor to ask her a favor and she hit the stores at 4:30am. Wow, that is dedication.

I asked my neighbor if she could keep an eye on the house. Why? Josh and I decided that Ella was doing well enough that we should try to take her on an adventure.

By 3pm, the car was loaded and we were headed for the mountains. We had asked her pulmonologist about going into the mountains. He advised that Ella should be pretty much the same, but may require more oxygen. Otherwise, it should not really have an impact on her. So, we decided to go for it.

The drive up made it clear that winter had arrived. The roads were icy and snow was falling. It was gorgeous although not the best driving conditions. We passed a few accidents on the way up the mountain, all on the opposite side of the road heading back towards Denver.

Ella was in such a great mood. She loves going out on adventures. Most of the time, it is to go to the hospital or the doctor. We want her to have other experiences in the car too. She was having a good time watching the scenery go by through the window. Here and there, she would take little cat naps.

Josh has a big project for work that has kept him really busy this week, even into this weekend. It needs to be done by the time he goes to work on Monday. So although we came to the mountains, he is busy in the corner with his headphones on, working away. Ella is chillin’ out watching some videos. We are just enjoying the change of scenery.

By the time we arrived at Copper Mountain, it was dark. Although you can peek out and see the snow falling, we will need to wait till tomorrow to enjoy the winter wonderland scenery. I’m looking forward to it. I love looking at the mountains and the snow covered pine trees. Somehow, someway, coming to the mountains always rejuvenates my spirit.

Ella can’t appreciate it much these days, but I look forward to the days when she can enjoy coming to the mountains too. I have visions in future years of spending time here as a family and teaching Ella to ski and snow shoe.

The best part is that we were not sure how Ella would adjust to the mountains. The altitude is around 10,000 feet. Our home in the Denver metro area is close to 6,000 feet, so this is significantly higher. She is requiring 1.5 liters when asleep and close to 2 liters when she is awake. Other than turning up the concentrator more, she is acting like she is very comfortable.

That makes us so happy. It means that we can come to the mountains as a family more often in future days; something we have always enjoyed.

Psalm 119:77 (NIV)
Let your compassion come to me that I may live,
for your law is my delight.

The winter wonderland was snowy…it was snowing when we arrived late yesterday afternoon. Literally, it has not stopped.

Ella enjoyed watching the snow, especially after her warm bath and hot towel from the dryer. It was like a spa treatment with a great view!

As Josh worked all afternoon, he kept looking out the window and seeing the snow fall. He was hoping that it would stop. Josh was planning to drive down the mountain back to Denver to watch an Avalanche game tonight.

When the snow continued to fall, he decided to leave early, knowing that the icy roads would take longer than normal. However, when he started the drive and realized that the initial 15 minute portion of the drive was going to take 90 minutes, he quickly decided that the hockey game was not worth it and turned around. Luckily, he called and was informed that he can turn in his tickets for a future game. That is pretty cool.

So the Bun and I thought we were going to hang out solo late into the night and instead it was all three of us as a family. It is so nice to have a change of scenery from home and hang out in the mountains. It is so beautiful up here.

Last night was one of the best nights for Ella. It was the first time in several weeks that she slept 8 hours straight. She has done really well since she has been up in the mountains. Who would have thought? Also, she had a long nap today. This getaway has been really comfy for her. She feels good and is relaxing and catching up on her zzzzs. I could only hope that she will sleep that well tonight.

The retching is still there. It is tough because we know that some of it is a learned response. We are hoping that the OT can really help Ella with her feeding skills and possibly help us with the retching behavior.

We’re hoping and praying that the snow will subside. The plan is to leave late morning. But if it is still snowing and there are accidents of any kind, it will likely take several hours. Please pray that we will stay safe on our drive back home tomorrow.

The morning was relaxing and quiet as the snow continued to fall. It was pretty to look at, but it also presented a clear danger in driving home. We knew that it was going to take a long time, but we had no idea what was in store.

The first part of the drive that should have taken about 20-25 minutes took 3 hours. It is a gradual uphill climb to the highest altitude on the drive. Not only had the snow been falling continously, but there were so many cars on the road. It was like a parking lot. Because there were so many cars, the plows couldn’t clear the roads adequately to keep up with the snowfall.

Many people were driving vehicles that were not suited for the winter driving conditions. Even those with four wheel drive were still having challenges. Since it was uphill, it presented an even greater obstacle. In that situation, momentum is your friend. Too many cars would stop completely and then would try to start and were sliding around the road and blocking lanes. Their tires would not grab the road. You could smell brakes and clutches burning. It was a scary drive. Everywhere around you, cars were sliding around. Josh was trying his best to keep the car moving and avoid other drivers.

Once we got to the Eisenhower Tunnel, it became a downhill drive. At first, the visibility was so limited. The wind was blowing the snow around so hard that you could barely see the tail lights of the vehicle in front of you. We were not having the issues of cars spinning out, but the road was icy and the visibility was poor. From this point in the drive, everything went smooth. We took our time, but it was not scary like the first three hours of the drive.

It was hard with Ella. For the first part of the drive, she did well. But after an hour, she became fussy. She does not like her car seat. It is not that comfortable. She was just bored and there was only so much I could do to entertain her. The movement of the car helps, but since it was bumper to bumper traffic, the car wasn’t moving all that much. Finally, I grabbed her DVD player. I was leaving it as a last resort. We did not have the plug for the car, so it was on batteries. We knew that batteries would not last long. But when I could not get her to stop crying after trying and trying to console, I distracted her with the DVD player. Thankfully, the batteries lasted longer than we imagined and by that point, the motion of the car was back as we headed home.

When we got down the mountain, we discovered that it had been snowing in Denver too. As I type this post, there is snow outside covering the rooftops and trees, and the temperature is 21 degrees. Chilly.

It was so nice to have a getaway weekend. It is a lot of work to pack up everything for Ella, but well worth the change in scenery. I’m not sure when we will be able to do it again, but it is so nice to know that we can go have that time as a family. And yet at the same time, it is nice to come home.

Work starts up again tomorrow. I’m hoping the roads are more clear for the morning commutes. Nothing is worse than it taking 2 hours to drive to work. Kelly is buried in snow down in Colorado Springs (16″ of snow today). Instead of driving back tonight, she is going to come early in the morning. Please pray for a safe trip back for her.

James 1:16-18 (The Message)
So, my very dear friends, don’t get thrown off course. Every desirable and beneficial gift comes out of heaven. The gifts are rivers of light cascading down from the Father of Light. There is nothing deceitful in God, nothing two-faced, nothing fickle. He brought us to life using the true Word, showing us off as the crown of all his creatures.

I came home from work late tonight. Immediately, I relieved Josh. He is still buried deep in his project. He came to bed last night at 3:30am and has been working feverishly all day. I can tell he is tired and exhausted.

Because it was later, I did not see Kelly. So, I am not sure how Ella did today. It sure looks like they were having a fun time based on the pictures.

Ella is fussy tonight but I’m betting that she is just tired. Actually, we are all tired here at the West family household, so tonight’s post is going to be short and sweet.

Psalm 13:5 (NLT)
But I trust in your unfailing love.
I will rejoice because you have rescued me.

Below you can see the Bun working with her amazingly sweet and talented physical therapist. It’s encouraging to watch Ella progress in this area. Enjoy the pics.

Ella slept better last night. On Monday night, I was up about 10 times. Last night, it was only 3 times.
I’m hoping she sleeps well tonight.

Kelly reported that the Bun was in a good mood today. Although there were no PT or OT sessions, they still did their exercise together throughout the day. Ella seemed to be smiling a lot and having a good time.

So, some of you might have wondered about the project that Josh was working on. Well, Josh normally does all the backend programming to make slide shows work for his company, Photobucket.com. We use slide shows all the time to show off Ella on the blog.

Well, this slideshow not only took programming time from Josh but it also involved him dressing up in a costume and filming footage in our basement. Yep, Josh is Santa in the slide show below which is now being used by millions of people! Pretty cool…

Wow, some of the insurance statements came today in the mail. Just for 7-8 weeks in the hospital in Denver, it was nearly $400k. Can you imagine life without insurance? I’m just in shock over how much money was spent while Ella lied in bed every day and they tried to adjust medicines.

As often as I can, I try to go and read other blogs of CDH babies and their parents. It is so heart breaking to see the trials of those who survive the defect and those who we will meet in heaven. Every time I read of another baby with their challenges to fight for life, it brings a flood of memories back from last year in the NICU with Ella. The daily challenge and roller coaster of having a CDH baby. It is such a challenge to see your baby so sick and yet there is really nothing you can do. My mind is baffled when I look at Ella and think about all she has endured in her short little life.

I received a pamphlet in the mail and it described the developmental milestones. I’d be lying if it wasn’t a bit discouraging. Every Mom wants the best for their child. Ella does most of the items on the birth – 3 months scale, and very few on the rest of the scale to her 16 months of age.

Yet, it is amazing that she is even alive. She is our little miracle. We are so blessed to have her in our lives. Although we may not understand His purposes or His ways, He ordains all of it. Every detail. Ella is made perfect in Him. She is made just the way He wants her to be. We need to trust Him: trust His plan for her life, for our lives.

Tonight, I lift up the parents of those with CDH babies. I pray that God will protect the hearts of the parents and families. Some babies are living and battling with CDH every day while other babies have been taken into His hands. I pray that we will learn to trust and surrender to His plan for our lives and for the lives of our children. Teach us to trust you more. Heal our hearts from any pain and sorrow that we’ve endured. Help us to have peace with whatever our circumstances might be. We trust that you are in control and thank you for the babies that you have placed in our lives.

Psalm 62:8 (NLT)
O my people, trust in him at all times.
Pour out your heart to him,
for God is our refuge.