Posted (Tina) in All Posts on November-30-2008

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.

Posted (Tina) in All Posts on November-29-2008

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.

Posted (Tina) in All Posts on November-28-2008

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.

Posted (Tina) in All Posts on November-27-2008

Posted (Tina) in All Posts on November-26-2008

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.

Posted (Tina) in All Posts on November-25-2008

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.

Posted (jooosh) in All Posts on November-24-2008

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.

Posted (Tina) in All Posts on November-23-2008

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.

Posted (Tina) in All Posts on November-22-2008

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.

Posted (jooosh) in All Posts on November-21-2008

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.