Ella had a great day – she was so happy and full of smiles.

It seems like we have figured out the mystery to her diuretics…for this volume of food (768ccs total each day). If I think about it, she still has her challenges with retching and waking up at night, but she has been a lot more stable since her last downturn. Once we gave her the extra doses of Bumex and dried her out, she has been in a better place (since about Thanksgiving). It’s been a nice, long stretch for the Bun.

We are getting labs done this Thursday before we see the pulmonologist. I’m hoping that things won’t need to change too much since she seems to be in such a good place. But yet, I know that she needs more food/calories. As soon as we change the volume of fluid she intakes, it can throw off her proper dosage of diuretics and she may get “too wet” which causes her respiratory distress.

The bigger challenge: she has not really put on weight since she left the hospital. Yet, it will be 2 months on Saturday. Something tells me that her food volume and meds will need to be adjusted so she can gain more weight. And this typically means some rough days ahead for Ella. I’m making a note to enjoy the honeymoon while it lasts over the next couple of days.

Josh went to a Avalanche hockey game tonight with Ella’s Grandpa. Looks like they had a good time.

It is so great to have Christmas time. The holiday season always brings certain cheer and memories to mind. I can’t wait for Ella to get old enough to enjoy it and make her own memories too.

It was not fun to drive in this morning on the way to work because we accumulated about 6-8 inches of snow overnight. But as I drove amidst the cars, the sun shined brightly. The snow glistened back and more snow continued to fall. It was beautiful.

Romans 15:13 (NLT)
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.

There was no therapy appointments today; Ella and Kelly just hung out together.

Kelly was actually not feeling great, so it was low-key and she did not push Ella too much. Probably the biggest change in the last 3 days is Ella’s feeding regiment. We started on Saturday, tested it more on Sunday and today was another full day of moving towards bolus feeds. This simply means that we can use a syringe to place a large amount of food all at once into Ella through her g-tube.

Since she had her most recent surgery on Sept 3rd, we have not been able to bolus feed. She has been attached to a food pump and food bag on a continuous drip. Yes, it makes it tough to be mobile with her, even just to put her in a chair or have her lay on her belly and do physical therapy.

Being stuck to a food pump as well as oxygen is very inconvenient. At this point, I had just accepted the fact and gotten completely used to it. But, I can tell you that the taste of freedom without the food pump is nice and I have already started to like the idea of only being connected to oxygen. It may not sound like a big deal, but it gives us a lot more freedom.

Ella looked really good as she sat in her chair earlier today to watch a video. It’s amazing that videos can cause such a great distraction. She forgets that she is working out!

We are in the process of trying to see if we can get Ella approved for more occupational therapy via our health insurance policy. The new OT recognizes that Ella is way behind and would like to try and come more often. This is a blessing because Ella really does need the help to catch up. Remember that when babies are born, eating, swallowing, sucking is all instinctual. But as the 2 month mark passes, it becomes a learned skill rather than an instinctual skill. We have to teach Ella how to eat. And that is tough considering her history and oral aversion. Please pray that we will get the additional therapy hours approved. We would love the opportunity to give her more help in this area.

I love it when Ella gets sleepy. Sometimes, she can get cranky. Other times, she can come up with some great facial expressions. She is such a little cupcake!

John 15:5-8 (NLT)
“Yes, I am the vine; you are the branches. Those who remain in me, and I in them, will produce much fruit. For apart from me you can do nothing…When you produce much fruit, you are my true disciples. This brings great glory to my Father.”

Such a great reminder as we travel through each day: remain in Him. It can be tough to remember to do this continually throughout each day. But when I am on the lookout for Him: I see Him and I hear Him. When I am not paying attention, life can pass by.

We can’t bear much fruit if we are not focused on Him. My reminder for today is to remain in Him.

I can’t believe the weekend is over. I just needed one more day. Don’t we all feel that way? With the holiday season upon us, I did not get the decorating around the house completed like I wanted to…bummer! And the weekdays are just so busy!

This week, Ella has an appointment with her pulmonologist on Thursday. We have to get labs again and see where she is at fluid wise. Her weight last week on Friday was 8.12, down from 8.14 two weeks prior. It makes you realize that she definitely had fluid on board. For this past week, she has been behaving great and seems like she is nice and dry. We will see what the labs show. But, she is not gaining weight like she should, so know we have to come up with a new strategy for the next steps.

Ideally, she would take 100ccs per kilo, per day of formula. Currently, she is at approximately 94ccs per kilo per day (100ccs – 120ccs per kilo, per day is what is recommended for weight gain). It would seem like an easy decision to simply give her 1cc extra per hour for 24 hours (24ccs extra per day) to help bring her to the right amount. However, it could throw off her fluid balance. After talking to the pulmonolgist on Thursday, we might go this route. Either way, we want to ask if her meds need to be adjusted. The amounts are based off her weight when she left the hospital and she has gained weight since mid-October.

We just found out that Grandma West is going to come out and visit us over Christmas. She found a good deal on a direct flight and decided to come and join us. It has been a long time since we spent Christmas with her, so it will be nice. Plus, no one from our family has ever flown out for Christmas in Colorado. It will be good for her to have some time around Ella.

Tonight, I was invited to a dinner with my friend to celebrate our upcoming birthdays. We share the same birthday and she will be out of town on our celebratory day. So it was really nice for Josh to watch Ella so that I could go out to dinner with my friend and have some girl time.

As we start another week, I am reminded of God’s faithfulness.

Isaiah 25:1 (NIV)
O LORD, you are my God;
I will exalt you and praise your name,
for in perfect faithfulness you have
done marvelous things,
things planned long ago.

It snowed all day today. In the early morning, it took Josh 2 hours to get to work. And on the drive home, it was frosty. Do you see my dashboard? I could not believe that my car was registering the temperature at -8 degrees. Fortunately, this type of freeze is not typical.

Ella slept pretty well last night. She only woke up 2 times, which is good for her. Then, she had a great day hanging out with Kelly.

Clinically, she looks great. At night, we are turning down her oxygen to 750ccs. During the day when she took a nap, Kelly caught her saturations at 100 and her heart rate at 103! That is low for Ella. It means that her fluid balance is good; she is likely dry.

Even though it was late when I got home, Ella continued to smile and be in a great mood for me. I just hope that this streak of doing well can continue.

We’re so blessed to have this little Bun in our lives.

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.

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.

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.

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 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.