The Bun started her day with some great bed head. I can honestly say I don’t have this issue.

We made it to Kansas City, and our room number in the hotel is 1313. I thought having a 13th floor in a building was bad luck. I also just noticed that it is day 311. Lots of 1’s and 3’s…hmm…go figure. The heavy storms were to the north and south of us during the drive. We only saw 3 drops of rain…yeah…I counted ’em (thank God).

You can see how much leg room Tina has in the back seat.

She did figure out how to make herself a cup holder though :).

Half way through the drive, we got Ella out for a diaper change and food break. She’s not a big fan of the car seat, but she perks right up when you take her out.

Once we arrive at the hotel, the Bun enjoyed doing some stretching out…

and Tina and I enjoyed some Kansas City BBQ =).

We’re going to try and hit the road earlier tomorrow because we’re pushing all the way to Denver and it’s going to be about a 9 hour drive.

We expect to be turning up Ella’s oxygen as the elevation increases. The pulse-oximeter will be hooked up to confirm her saturations. We’re praying that she transitions well into the altitude and that she can tolerate the longer drive. Also praying for the good weather to continue.

WE’RE ALMOST HOME!!!!

Wow, I can’t believe that we made it.

We left Kansas City a bit later than we wanted at 9:45am, but we did not have a restful night sleep. Ella didn’t either. So the drive started with Venti coffees as we knew that there was about 600 miles of driving ahead of us.

God took care of us during this drive. We skirted every single storm. Even on the Kansas City weather report this morning, there was hail that was strong enough to take out windshields in Wichita, KS. Literally, we only experienced the three drops of rain between St. Louis and Kansas City from the other day. There were even storms in Colorado as we were driving into the Denver Metro Area. We passed all of them, but noted that the promise of a rainbow was present to greet us.

Ella did amazing. She had her fussy moments, but the way I look at it, she could have cried the entire time. We took breaks to stretch her from her chair, change her and feed her. But still, she could have been a lot worse. I thought she handled it the best we could expect.

We were monitoring her saturations. While she was in the car, it seemed that we had to increase her oxygen to 700ccs, then 800ccs. By the time we were home in Lone Tree (6,000 feet above sea level), she needed 1 liter of oxygen to maintain her heart rate and saturations. As she is asleep right now, she has stabilized on 1 liter of oxygen. At sea level in Gainesville, she was stable on 400ccs of oxygen, so this is more than double. It will be interesting to see how that changes in the coming days, weeks and months.

We crossed the Colorado state line around 5pm and made it to the house around 8pm. Josh and I were both overwhelmed with emotion as we drove into the state and pulled up to our front door. You can see a video of us arriving in Colorado below:

I think the part that makes it even more heart wrenching is that we can see the hospital from our front door, Sky Ridge Medical Center. This is the hospital just a few blocks from our house, where we anticipated Ella’s birth place, before we found out that she had CDH.

It is also hard to believe that we are starting a new chapter. That felt like an eternity – – going to Gainesville to have a baby. Looking around the house, we have not been here together in almost a year. That is crazy. As a matter of fact one year ago today, we had arrived in Gainesville for the first time to interview Dr. Kays. So much has happened since that time.

One other surprise to note: when we opened our front door, we were greeted with decorations including a customized banner and balloons to welcome us home. From there, we found a note and all kinds of meals. Our refrigerator and freezer were filled with foods, things to satisfy at every meal. Our lovely friends, the Williams, or better known in this forum as “Williamsburg” had arranged with my Dad to come to our house and pull off this wonderful gesture.

Ahh, it is so good to be home…that is, our home in Colorado.

Thank you Lord for bringing us home safely with Ella. We praise you and are in awe of the works of your hands.

And as you taught us first hand…there are no accidents, only God ordained moments.

Ella’s grandpa was our first official visitor. I think he was a little excited to see us back in Colorado. =)

We still have a bunch of unpacking to do, and we’re both still totally wiped from the traveling. I’m going to extend my time off work through tomorrow to help Tina get the house organized and rest up for work.

Ella’s grandma (Tina’s mom) also flew in from California tonight. She’ll be with us for the next week and a half.

Please pray for our discernment when it comes to Ella’s doctors. She has multiple appointments this week, and we will be choosing doctors based on what our gut tells us.

Gotta love that smile on the Bun!

We had 2 doctor appointments with Ella today, to meet and greet with pediatricians. We have another one tomorrow and are praying for discernment to make the right choice for Ella. So far, one stands out to us but there is still another pediatrician to meet tomorrow, so time will tell.

Also, Ella has her first appointment tomorrow with her new PT. We are excited that she will be coming to our home for the appointments, so that we do not have to drive.

Speaking of driving, Ella had one huge meltdown today in the car. I had to bump her up to 2 liters of oxygen to get her through it. It was so hard to hear her in the back and not be able to help her. Instead, Grandma was riding in the back and helping. But it is tough to think about how I will do all of this by myself in a couple of weeks. I asked my Mom after she experienced the episode how she imagines that I will handle this situation on my own. She simply shook her head and answered that she wasn’t sure; it is a extremely difficult thing to do solo.

In other words, it is just going to be really tough to get to wherever we need to go and try and manage her from the front seat. Heck, even being back at home and trying to switch her between 2 separate oxygen concentrators on different levels of our house, get her in and out of the car with the 50′ cords and pulse oximeter cords has been a challenge to me.

In between doctor visits today, we continued to unpack and move furniture. We were able to clear an entire room for Ella and I to hang out in during the day. This will give us the room to play freely and give us room for therapy appointments. Although it has been a lot of work and there is still more to do, it has been worth it.

Originally, Josh had planned to return to work today but ended up being so exhausted from all the travel this past week that he took today off work too. He was still unpacking and doing a lot around the house. Please pray that he will sleep well tonight and be rested for his first day back in the office at work.

The best part of the day was going out on our patio when the sun was starting to set. It was about 75 degrees with a slight breeze. Although they are building more houses across the street, we still have a view right now. It was great to enjoy the pleasant weather outside with the Bun.

It was the first Colorado sunset that the Bun has experienced…and boy, it was magnificent.

We’re just continuing to thank Him for our baby girl and trusting that He will guide us every step of the way in the future.

Today was another busy day for the Bun. In between the madness, she had some time playing with Grandma.

In the afternoon, we went to the Children’s Hospital and tried out the Special Care Clinic for Ella’s primary care. The new facility is amazing.

The doctor ordered labs which required drawing blood. That is never Ella’s favorite thing to do but she did need to have it done. Here, they finger prick to get the blood. We had never tried this before. Since it is hard to locate a vein on her, I was hopeful that it might be a better experience….wrong!

I was asked to hold a warmer on her hand to help bring blood to the area. When they pricked her finger, the fighting and crying from Ella started. The nurse continued to hold pressure on her finger and have the drops of blood go into two vials. I’m sure it was not a long process, but it felt like an eternity to me, so it had to feel that way for Ella too. That was one of my least favorite parts: the process took too long.

I was trying to hold Ella down and her finger was bleeding profusely. The gauze got soaked, so the nurse asked me to hold it in place while she got more gauze. Then, my fingers became bloody and I was trying to console and hold down Ella with a dirty hand. The nurse mentioned to not use the warmer next time, as Ella doesn’t need help to bleed. By the time it was finished, I even had blood on my clothing. Needless to say, I was not impressed by the experience.

While we were there, the doctor ordered for a nutritionist to visit Ella too. She looked at her overall nutrition and caloric intake and recommended that we change the formula to add more calories. We mix Alimentum to 24 calories. The nutritionist suggested mixing it to 26 calories.

In the end, we did not decide to go with the Special Care Clinic. Instead, we met a private doctor yesterday, Dr. Steve Perry. My mom and I were clearly impressed with him, but wanted to meet and greet with all 3 of the doctors before making a decision.

Unfortunately, the PT had to cancel for today’s session. We hope to reschedule for a new date very soon.

I’d love to write more, but I will have to save it for another post. I’m drifting off to sleep as I write this entry…

Today was low-key. While Josh went to work, Grandma and I spent more time unpacking and getting settled. Our main focus was Ella’s room. Although there is still cleaning to do, tonight is her first official night in her crib. Also, it is the first night that she will not be in the same room with us. It should be an interesting experience, especially if she wakes up or her cannulas become dislodged.

The Special Care Clinic at the Children’s Hospital called with the results of Ella’s lab work. Everything looked good, except her BUN is 18. If you remember, Dr. Kays likes for her BUN to be 20 or higher (on the dry side). When she was readmitted into the hospital after her NICU experience, her BUN was 12. Two days before she was readmitted it was 14, so it can move in the wrong direction quickly. Other times, her BUN has been as high as 29. When her BUN is lower, it means she is more wet and likely retaining some fluid.

The only change we made recently was giving her diluted apple juice throughout the day, per the pediatrician in Gainesville. We would make up 120ccs and offer it throughout the day. Sometimes she seemed to take the whole thing and other times only a part of it.

After discussing it with Josh, our plan is to cease giving her the extra fluid. After all, she has always been fluid restricted to 100ccs per kilo per day. From here, we plan to get labs in 2-3 weeks, so we can tell if that is the variable causing the potential lower BUN. We would have a better idea if we were still in Florida (we had an established base line for her), but since her oxygen has been increased significantly due to altitude, it is hard to tell.

Tomorrow, we are going to the Children’s Hospital for an echo and to meet Dr, Steve Abman, her pulmonologist. We are excited about meeting him in person.

Thank you for all the amazing support and prayers from everyone.

Wow, today was exhausting.

It started with trying to find a pharmacy that would make Ella’s heart medicine correctly. We thought we located one, so we dropped off the prescription yesterday, for pick up today. Instead, they called and told us that based on the way they would compound the medicine, it would be $428.99 for a 30 day supply!

It was $72 for a 30 day supply in Gainesville. But we are low and only have enough medicine for another 24 hours, so I was stressing out. I finally found a place that would turn it around quick enough and would make it correctly. They were nice enough to accept my fax of the prescription to start making it (luckily I had made a copy), but they needed the original prescription when we pick it up. So, this meant an extra 30 minute drive across town to pick up the original prescription. All said and done, the new pharmacy will make it for a cost of $196 for a 30 day supply. This means more back and forth with the insurance company to fight for them to cover the medicine that she needs.

We left the house around 12:15pm to head to Children’s Hospital. Once again, the building is impressive.

First, Ella was scheduled for an echocardiogram. The technician was great; you can tell that they work with kids all the time. After about an hour, she reviewed the images with the cardiologist. He came in and explained that there were a couple of images that they were not able to get, so they might have to sedate her. Ella has never been sedated for an echo, so I was not real thrilled about the idea. I explained my position, so he went ahead and tried to get the measurements themselves. This meant another 45 minutes of sitting still for Ella.

When the echo was complete, they were still not able to locate 2 measurements of pulmonary hypertension. They felt it was because Ella was moving too much. It was indicated that it is likely that she will need sedation the next time they perform an echo.

From there, we went over to pulmonology. We were 45 minutes late to see the pulmonologist because the echo took so long. When we went back, they wanted to weigh her and get all her vital stats. When she weighed in, she was 14 pounds, 3 ounces. This didn’t sound great to me because she weighed in downstairs the other day at 13 pounds 12 ounces. All of a sudden, I began to wonder if she has started to retain fluid.

We are pleased that we picked Dr. Steve Abman to monitor her heart and lungs. He is knowledgeable, has great bedside manner and you get the sense that he truly cares. That is so important to me. He did a few things: increased her dosage of sildenifil, decreased her oxygen to .5 liters of oxygen via her nose cannula, ordered an overnight saturation test with a pulse oximeter, and ordered a swallow study to ensure that she is not micro-aspirating. Also, Dr. Lewinsky was present for the exam and meeting too. This ensures that 2 pulmonary doctors are familiar with Ella, in case we have any concerns.

Dr. Abman wants to see her again in 2 months, for a follow-up echo and visit. He asked who we picked for her primary care, so we mentioned Dr. Steve Perry and his face lit up! He ensured that they will coordinate her care together. Apparently, they have worked together frequently. That was a total blessing. I definitely wanted a pediatrician and pulmonologist to work together on Ella’s care. So this was a big accomplishment for the week.

Dr. Abman’s approach to pulmonary hypertension is different than Dr. Kays. In this way, we almost have to re-train our minds. Dr. Kays wants Ella to maintain high saturations whereas Dr. Abman feels that her prime saturation range is between 92-94, awake or asleep. His basis has more to do with the in-depth research and studies showing that there can be too much pressure in the lungs when the pulmonary vessels are too dilated. He did mention that he reviewed the echo on CD from 5/1/2008 and thought it looked good. He is positive about her prognosis moving forward.

Tonight, we have Ella on .5 liter and she is saturating 97 with a heart rate of 125, as she is on her way to deep sleep. According to Dr. Abman, we could wean the oxygen more. He gave the flexibility to wean until we got her to the 92-94 range. This is such a different approach to Ella’s care. We will see where she settles in. Either way, they will be coming to give us a special pulse oximeter that will track her heart rate and saturations while she is asleep one night. Once this is reviewed by Dr. Abman, he will be able to tell if this is the right level of oxygen therapy for Ella.

Before we left, we mentioned the concern about fluid retention. The doc suggested that we go down to the Special Care Clinic and use the exact same scale, so we can see if it is accurate. I’m so glad that he made that suggestion. She weighed 6.2 kg the other day and 6.3 kg today, on the same scale. This makes me believe that maybe she is okay on the fluid side. We’ll just have to continue to monitor it.

I’m so glad that my Mom is still here to help me with Ella for the next week. It makes me realize how tough it is going to be to pull off life in solo mode.

We’re just so blessed to have this little girl. Each day we are around other people and share our story, we are reminded that she is truly a miracle.

Thank goodness today has been somewhat low key.

Last night, we turned down Ella’s oxygen per the directives of her new pulmonologist. She was at 300ccs. That was all fine and dandy except that every time she moved during the night, the pulse oximeter would alarm. Each time, I would run into her room thinking that her cannulas had come out of her nose. Finally, I began to notice a pattern. It was simply the action of her moving over; it is that sensitive. Needless to say, I am running on low steam since I was up pretty much all night.

We received a call today from the pulmonologist. First thing, I asked about the pulse oximeter alarming all night while trying to maintain saturations of 92-94. Also, I told him that we’ve tried to keep her on 500ccs liter while she has been awake, but she dips down into the mid to high 80’s too often. So, the plan is to try 750ccs while she is awake today and 500ccs tonight. I’ve changed the settings on the pulse oximeter to try and minimize alarming, but am hoping that her oxygen level will simply be adequate and we will not find ourselves running into her room countless times throughout the night.

The pulmonologist reported that Ella’s echocardiogram yesterday looked great. The anatomy of her heart appears normal, it is functioning well and there is no sign of pulmonary hypertension. This simply means that her heart medicine is continuing to do wonders for her.

Speaking of heart medicine, Josh was a great husband and ran to the compound pharmacy all the way across town early this morning before work. This eliminated a trip that Grandma & I would have needed to make with Ella, just to give her early morning doses.

It was an absolutely beautiful day in Denver – – the weather was just perfect. This morning, it was slightly crisp, but it was warm in the sun. You could see the snow capped mountains and downtown from our patio. We decided to lounge back in the patio chairs. Ella fell asleep while we were reclined together in the chair. It was just the relaxing moment that I needed.

Later, it became a bit warmer and Grandma and I decided that we needed to get out of the house. I took the time to put together a new jogging stroller that I received last year as a gift and thought we would try it out. I figured that it might work well for Ella since the seat is more reclined. After all, The Bun’s favorite position is lying down.

As we neared our 15 minute stroll to Super Target, Ella fell asleep in the stroller. So cute…

Grandma went inside to get a few groceries for our dinner tonight and I just stayed outside on a bench watching Ella and noting all the busy people coming and going. As I looked out at the urban city and watched the buzz of activity, it did feel good to be back in familiar surroundings.

I’m looking forward to tomorrow. Josh is going to give me a break. It starts with as much sleep as I want in the morning and a day of running around with my Mom.

Thank God it’s Friday…and each day we thank Him for our precious girl.

Tina and Grandma escaped to do some shopping and I spent time taking care of the Bun. Nothing makes me appreciate my wife more than a little alone time with Ella. Don’t get me wrong. Ella is sweet as peaches, but she is a lot of work. And when she’s cranky, that goes double. We did have a good time today though, and boy, she is cute.

We’re still getting the house in order trying to get into a routine. Going back to work in the office was a very surreal experience. The engineering team that I’m on has almost tripled in size. Lots of good people though.

One thing I totally didn’t anticipate was just how much I was going to miss being with my girls. I was with Tina and Ella pretty much every day for the last 10+ months in Gainesville.

The fact that we’re actually home still hasn’t fully hit me. I’ve had a couple moments where the emotions of it all have spilled over, but the realization of the entire journey continues to sink in.

Continuing to thank God for bringing us home.