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.

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…

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.

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.

We do not know what to expect as we continue on this journey and seek your will. We just know that it has been amazing to be obedient to you – – what a miracle baby girl that you have entrusted to us.

May we seek you daily and have Ella Renae serve as a clear reminder of your love. Nothing is impossible with you.

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

After 5 hours of driving, we made it to St. Louis. In the process, we went through Tennessee, Kentucky, Illinois and Missouri. The weather was perfect – – sunny and dry.

Once again, the Bun was good on the drive and started to lose it right when we arrived. Thank goodness that she perks up immediately upon getting out of that car seat!

Our hotel in St. Louis is the Hyatt Regency at Union Station. It used to be a train station in the late 1800’s. The architecture is very cool, so we had to do a bit of exploring this afternoon. Ella liked the scenery, especially the outdoor garden area. I couldn’t help but tell her secrets.

Tomorrow is a 4 hour drive to Kansas City, Missouri. We hope to arrive earlier so we can relax before the LONG drive across Kansas and Colorado on Saturday.

Thank you Lord for keeping us safe on our drive. We pray for protection on the remainder of our trip home. We praise you and thank you for our miracle baby girl. Each day we look at her is a reminder of your love in our lives. In Jesus’ name, Amen.

The drive was not bad today. We left Atlanta around 12 noon and stopped twice. We used those opportunities to fuel the car, ourselves and Ella as well as have potty breaks.

Honestly, Ella has been doing a great job. Sure, she fusses now and then because she’s a baby! But overall, she has been doing fantastic! And thanks again to Grandma West – – that DVD player is amazing! Ella sure loves to watch her signing videos and Baby Einstein. Now and again, we did catch her sleeping too.

We did pick the right itinerary for our journey home. Just as we arrived at our hotel today, Ella started to fuss. She had been in the car for about 6 hours total and she was done.

The meltdown started, but as soon as I started pushing the stroller, she paused. The lobby lights and sounds made her stop and check out the surroundings. Even the elevator ride to our room on the top floor made for something more interesting than the car. As soon as I got her out of the car seat and laid her on a blanket in the room, she was SO happy!

I think that was a simple and subtle way of letting us know that she had reached her travel limit for the day.

We are at the Sheraton at Music City in Nashville. Once again, we ended up with a great room. The highlight of Nashville trip was having Keith, Tracy and Christie Mitchell visit us (we met them in the NICU the first week that Ella was born last July). They drove an hour from Dickson, TN to come and see us. And of course, everything was good because they brought BBQ for dinner in our hotel room. We had a great time hanging out.

Sitting on the patio of the hotel room was surreal. Wait a minute…we are in Nashville, TN with Ella Renae?!?! We just love her so much and can’t believe that it has been 10 months and we are finally on our way back home.

Tomorrow, we are headed to St. Louis, MO, a 5 hour drive. Please continue to pray for safe travels and good weather.

Thanks for all the love and support.

Let the day begin…Our friend Kerri came to pick up Josh and Doug this morning to transport them for a much-needed cup of java and to take them to the airport.

Josh and Doug should be landing in Orlando around 3:30pm EST. We are praying for a safe and uneventful flight.

Here in Gainesville, we are trying to entertain the Bun and pack the rest of our stuff!

UPDATE 2:30pm EST: Well, the sweet lady came to pick up the crib…and she brought Ella a small gift. She gave her these cute John Deere socks, so we won’t forget Florida!

It was really nice of her. She also opted to purchase Ella’s swing. This was great for us because there will be limited room in the mini-van driving back to Colorado.

Ella has been watching videos today and hanging out with Jeanie while Mom continues to pack. One of her favorites is “Baby Signing Time” – – she gets really excited! Here are some photos that capture the moment:

UPDATE 4:30pm EST: Josh and Doug landed safely and have started driving back towards Gainesville, a 2 hour drive. Before they left Orlando, Doug had to stop and kiss his wife and girls. Josh didn’t mind the hugs either!

UPDATE 7:15pm EST: The boys made it to our apartment in Gainesville and we have celebrated by eating a pizza for dinner! Now, we are off to do more packing…

The boys woke up and decided to start their trip around 8:20CST. They are headed on I-70 straight through Kansas City, the rest of Kansas and into Colorado. There is supposed to be rain and thunderstorms throughout Kansas today, so we’re praying for safety. The drive lasts for about 13 hours, similar to yesterday.

UPDATE 2pm EST: Josh and Doug are 20 miles east of Topeka, KS. Only 8 hours left till they reach our Colorado home! Ella is having a good day too!

UPDATE 6pm EST: Continue to pray for safety – – Josh and Doug are in Ellis, KS and there is a tornado warning until 6:30pm EST! We think that they are past it, but there is hail, thunderstorms and a tornado warning. They stopped off the highway and are listening to the local radio. Based on what we can tell, they are better off to keep driving and getting out of Kansas since the tornado activity seems to be behind them. After just talking to them at 6:15pm EST, they have decided to continue driving towards Colorado.

UPDATE 8pm EST: Josh and Doug are almost in Colorado – – 15 miles away. They started driving away from the storms (thank goodness for cell phones and Internet), once they confirmed the exact location of the storms. Many nearby were taking shelter and instead, they hit the road and started driving. That was a wise decision as the tornado ended up going directly through Ellis, KS. They are only 3 hours from our house in Colorado!!!

And back here in Gainesville, Ella is having a great day hanging out with me and Jeanie.

UPDATE 11:15pm EST: Josh is going a route that is 20 minutes longer because he wants to show his buddy the lights of downtown Denver. They just drove past Invesco Field at Mile High. This means that they are about 15 minutes away from our house. It is getting close!

UPDATE 11:38pm EST: Home sweet home for Josh & the cats!!! Now, the boys will sleep good and wake up to catch a 9:45am flight from Denver to Orlando, so they can come all the way back to Gainesville by tomorrow night.

Thank you Lord for keeping Josh, Doug and the cats safe on the trip out to Colorado. We praise you and thank you for this new chapter of our journey. May you continue to watch over us and guide us as we finish our pilgrimage back to our home. In Jesus’ Name, Amen.

So, instead of sleeping last night we opted for a party. I think we were just so excited to have friends visit; it was too much fun.
That meant that getting up and starting to drive at 5am quickly went out the door for Doug and Josh!

Instead, the boys left with the cats from Gainesville at 10am this morning. It is a 13 hour drive to St. Louis. Throughout the day, I will update with pictures from their journey. So far, so good.

UPDATE 2pm EST: The boys are stopping for a quick bite to eat at Sonic in Macon, GA. So far, the cats are relaxing and everyone is still smiling!

UPDATE 5pm EST: They’ve switched seats and are now in Tennessee.

UPDATE 7:40pm EST: They are in Nashville and opted for White Castle to fill their bellies. Yeah, they ate those burgers in one bite! As far as the felines, the cats have been resting pretty much the last several hours. It is reported that Pumps is sleeping on top of Macy.

UPDATE 8:40pm EST: Doug & Josh have crossed over into Kentucky. They have about 4 hours of driving until they reach their hotel in St. Louis, MO.

UPDATE 1am EST: The boys and cats arrived in St. Louis safely! They are heading off to bed.

And let’s not forget…Happy 10 months Ella!

Wow, I can’t believe it is here.

Ella had her last occupational therapy and physical therapy appointments today. The next time will be new therapists in the Denver area.

The OT gave a great discharge summary and made note of Ella’s progress since he started seeing her in late February. It is a amazing to see how much progress she has made since the hospital.

The PT was cute and brought Ella a few books over the past couple of sessions. It was neat to see her “tune in” to Ella, especially over the last week. We liked her from the beginning because she is very perceptive and works well with infants. But she just got to the point where she was picking up on Ella’s cues. So likewise, Ella was starting to enjoy her too. The last session was good, complete with the Bun smiling and being playful with her.

As I type this, Josh is cooking a later dinner. He still has lots of work to do tonight to prepare for the trip early tomorrow morning.

Doug is coming up shortly to spend the night, so he is ready for the early drive. Along with him, Jeanie is in the car too. I’m not sure that if I mentioned that she was so sweet to offer to come up and spend the entire weekend with me. If you remember, she is the one that gave the Bun the Forget-Me-Not bracelet. And I know it was quite the sacrifice considering that she has a husband & 5 kids along with the fact that I have a nearly empty apartment with no furniture! So, the Bun and I will have a girls Memorial Day weekend with Jeanie!

I will plan on keeping everyone updated on the blog as far as Josh’s drive and his safety. Please pray that he and Doug will remain safe while driving and flying across the country.

We’re so excited…it is finally here. The Bun has no idea what she is in for…