Jul
21
    
Posted (Tina) in All Posts on July-21-2008

Ella was visited by a nutritionist today. Her name was Carrie and she was a really sweet person. She spent a lot of time consulting and gathering all the information on Ella’s condition and history.

A report will be put together by the end of the week with her recommendations. I am planning to take this with me to my appointment with Dr. Perry next Monday. I know he wants to increase Ella’s food volume to ensure enough caloric intake. It will be interesting to see what Carrie recommends and how Dr Perry decides to incorporate those recommendations.

Carrie had an infant scale with her, so we weighed and measured Ella. She weighed 15 lbs, 8 oz and was 27.25″ long. Every scale is so different, so I don’t hold onto that with any seriousness. I’ll be more interested to see how she weighs in on the scale at Dr. Perry’s office, especially if we can use the same one.

We have a PT appointment tomorrow. I’m hoping that Ella is in a better place and that she will have a good session since our last appointment didn’t really take place.

As you have witnessed before, the Bun sure likes playing with Dad when he arrives home from work.

I am reminded each day what a blessing it is to have this little girl. She has such a sweet spirit and I still cannot believe that we made it to this point. Only 3 more days until she has her first birthday!



 
Jul
20
    
Posted (Tina) in All Posts on July-20-2008


No, Ella has not started playing with light sockets! But, by looking at the picture above, you might be skeptical. Her hair is out of control these days!

Ella did some of her exercises, but was not too tolerant of “working” today. Maybe she knows that it is the weekend and expects a break too. Instead, she spent lots of time watching baby signing & Baby Einstein videos. She was smiling and kicking a lot which was fun to watch.


We had a great day hanging out with friends.

Josh and Stefanie Sides came over to visit with us and see the Bun. We had not seen them for over a year, since before we left for Ella’s birth to Florida.

It is so great to have the comfort of long time friends, where you can simply pick up from where you left off as if not a single day had passed. We have known them for almost 11 years; we met when we moved to Colorado back in 1997. We had a great lunch and then of course, the boys had to play the Wii.

Tomorrow, a nutritionist will be visiting our home at 10am. She will be reviewing Ella’s current feeding schedule and making recommendations for food intake as needed. We know that Dr. Perry plans on increasing Ella’s food intake after our appointment next week, simply based on weight gain. But, it will be interesting to see if this nutritionist recommends anything different than the nutritionist at the Children’s Hospital that saw Ella in early June.

We’re knocking on doors and praying fervently for direction in the coming days. Along with thinking about possible job scenarios for me, a bigger component is the daily care of Ella. We’re trusting that if it is meant to be, the perfect person will cross our path. We’re not in a rush, but just excited to see what His plans are for this next chapter.

Psalm 119:34-36
Give me understanding, and I will keep your law
and obey it with all my heart.

Direct me in the path of your commands,
for there I find delight.

Turn my heart toward your statutes
and not toward selfish gain.



 
Jul
19
    
Posted (Tina) in All Posts on July-19-2008


Yes, one year ago today…Josh and my Dad were in the car with 2 cats headed to Gainesville, FL. They were taking shifts and driving straight from Colorado to Florida. I stayed at home with our 2 dogs, hoping and praying that Ella would hold out for her birth in Gainesville, FL.

And now we are here, one year later…and we have a Bun! It feels like forever ago and yet, just like yesterday.

We went to our house that is on the market for rent. There was a lot of yard work to be completed. When we were driving to the house, it was 100 degrees outside….very hot for Denver! Josh sucked it up and got to work while I played inside with Ella.

Praising God every day for how far we’ve come, and for blessing us with this incredibly sweet girl. Only 5 more days ’till her 1st birthday….wow.



 
Jul
18
    
Posted (Tina) in All Posts on July-18-2008

Our first Colorado date night was a smashing success.

As we drove away from Ella last night, Josh was feeling more nervous than normal. We have only left her a few times since she was released from the hospital. And let’s clarify, it had nothing to do with Nurse Janet. It was simply that we had not left Ella with anyone since we had returned home to Colorado and it just felt strange.

We headed 5 minutes north of our house and ended up at the Brio Tuscan Grille, an upscale Italian restaurant. They just opened on Wednesday night, so it was their 2nd night in business at the Park Meadows Mall location.

The patio was beautiful and the weather was perfect. We sat on the outdoor couches and started with wine while we waited for a table. For their grand opening, they were carrying around free appetizers to taste.

Once we landed a table, it had a great sunset view of the mountains. You could tell that the service was a bit rough on the edges – – the staff was all new and just trying to figure things out. I think we were enjoying our free time too much to really care. The wine and atmosphere made up for all of it.

While we were sitting and waiting for salads to arrive, the general manager came to our table and introduced himself. We shared that we were on our first Colorado date night and gave him a 5 minute short description of Ella and our journey. Clearly, he was touched and felt privileged that we had picked his restaurant for such a big occasion.

Once we ordered, the server came back to the table and informed us that the manager was intending to cover the entire bill tonight. We were shocked! That was such a nice gesture and so unexpected.

About 5 minutes later, a gentleman from a nearby table approached us. He told us that he was a Christian and had overheard our conversation with the general manager. We shared more details about Ella, and he told us that he is a chiropractor. He offered his services free of charge, if we needed it. Wow, who would have thought that going to the Brio Tuscan Grille would have resulted in such generosity?

During dinner, I enjoyed Pasta alla Vodka and Josh enjoyed the Roasted Lamp Chops. Our entire date lasted about 3 hours and it felt like 10 hours. It was nice to escape away with just the two of us.

The entire time, we just reminisced about our journey this past year and wondering what God has in store for us in the coming days.

For those of you that have not read between the lines, I am going crazy staying at home with the Bun. It has nothing to do with my love for her and anyone that knows me well is not shocked by this confession. I have stated before that I am not the “Suzy Homemaker” type; God simply did not design me with those talents. Plus, I think that Ella’s medically fragile condition simply makes the entire stay-at-home mom experience even that much more challenging.

It has been tough for me because I have been battling feelings of guilt. I’ve felt bad that I don’t enjoy the stay-at-home mom experience more. Now that I have experienced it myself, I can honestly confess that it is the toughest job. I admire women that can stay-at-home with their kid(s) and feel fulfilled.

The bottom line is that we always want to be obedient to God’s will. That is why we went to Gainesville initially, why we decided to stay there longer, and why I quit my job to take care of Ella for the past 6 months. God was clear in the direction He wanted from us, so although the days have been tough at times, we knew it was the right decision for this season.

So as we look back and reflect while pondering what the future might hold, we look to Him for direction on the next best steps. We know that if we get clear direction from Him and we obey, it always works out. He takes care of all the details that seem impossible.

While we ate dinner, we also talked about the blog and all of you that have joined us on the journey. It has been an amazing way to share our story and receive support and love from friends, family and those we don’t know except virtually! Also, we talked about how touched we are that Nurse Janet came out to see us. She was one of the nurses that fell in love our baby girl. She is so sweet and it just meant a lot for her to visit.

It’s hard to believe that Ella will be 1 year old in 6 days from now. It’s so exciting to see how God worked this past year and it blows our minds to contemplate what He has in store for Ella. I’m sure it will be like nothing we could have imagined.

We are continuing to seek Him and waiting to hear His voice.

Psalm 119:2
Blessed are they who keep His statutes
and seek Him with all their heart.



 
Jul
17
    
Posted (Josh) in All Posts on July-17-2008

Lots to share but we’re too tired to write. Enjoy the pictures of the Bun and Nurse Janet.



 
Jul
16
    
Posted (Tina) in All Posts on July-16-2008

Ella’s congestion was a little bit better today although she still had her fair share of coughing, gagging and retching on her secretions. Poor little baby!

Grandpa came by to visit and say hello to us this afternoon. When the time came, he stayed and decided to watch Ella’s PT session. Unfortunately, I had to wake her from a nap to start the PT session. She seemed okay initially, but then started to get really upset. She was not consolable which is not typical for her. Even the PT noted the drastic difference in her behavior.

She was acting like maybe she was having gas/tummy issues. Finally, I vented her via the g-tube. Sure enough, that seemed to be the culprit.

Our PT session was pretty much null and void about 10 minutes after it started. I could not get her to calm down. She was turning purple/blue, so it also required a significant increase in her oxygen to get her to calm down.

We have a nutritionist through the Early Childhood Development program visiting next Monday. She will review Ella’s current diet, do some calculations and see if she recommends any different strategies for feeding/caloric requirements.

On a personal note, we have a potential renter viewing our home tomorrow. Just praying for wisdom, discernment and patience for the right family. It has been slow the past few weeks, with a few leads here and there. We would really like to get the house rented, so we’re hoping it picks up before the school year starts.

Nurse Janet and her husband Jason will be coming down from the mountains tomorrow. They plan on staying the night at our home before heading back to Florida and babysitting Ella, so that Josh and I can have a date night! It was offered, so we are definitely going to take advantage of it. Right now, we have no idea when we might be able to find someone else that we trust to watch Ella. So we figured that we better take the date night!

This morning, I read of another CDH baby boy that passed away during the night. It was so hard to read about their journey. He was only a few weeks old and he fought so hard for his life.

I wish there was a standard protocol or “best practices” for treating CDH nationwide. This way, every parent could go to their local doctors and have confidence that their baby was being given the best survival rate possible. Heck, we had to travel half way across the country to make that happen. And as of right now, Dr. Kays still has the highest survival rate in the country. For this reason, it sure makes us want to find a way to promote Dr. Kays and his talents more. Parents just don’t end up finding him…that needs to change.

Only one week and Ella will be a year old…she’s such a cute little Bun.



 
Jul
15
    
Posted (Tina) in All Posts on July-15-2008

Ella seemed to have more congestion than normal today. I’m not clear on why it was so much worse. But it made for a tough day with lots of coughing, retching and gagging.

Her PT came for another visit. We tried a new tummy toy that she received as an early birthday gift. That seemed to work well although it still required both of us to coordinate her using it. It just gives us another option for providing tummy time.

You can tell that her head and neck muscles are getting stronger. Overall, she seems to be tolerating a lot more physical therapy. I’m happy about that improvement.

Although today, the PT pushed for her to do too much coordination all at once and Ella rebelled. She was tolerant through a lot of it, but then lost her cool. That ended the session earlier than planned but gave us time to reflect and decide what we will try differently tomorrow.

Katie came to visit us one last time tonight, as she was concluding her business trip. It was so nice of her and Ani to make a point to visit us while they were in Denver. I certainly miss my friends from work and it was a nice treat to hang out with them since last weekend.

On another note, for those of you that subscribe to our email notifications, we sent an email a couple of weeks ago reminding about Ella’s Time Capsule. This is an opportunity for you to write a message directly to Ella. At the appropriate time of maturity in her teen years, we will give the Time Capsule to her as a gift. She will be able to read and reflect on how her life has impacted so many others. Be on the lookout for a reminder via the email notifications and if you have not subscribed, it is a good time to get on the list.

Thanks for all the love, support and prayers. It is a big day for the three of us next week and we are so blessed to have Ella Renae in our life. Happy 51 Weeks Ella!



 
Jul
14
    
Posted (Tina) in All Posts on July-14-2008

I can’t believe that Ella will be a year old in just 10 days. It is surreal…



 
Jul
13
    
Posted (Josh) in All Posts on July-13-2008



 
Jul
12
    
Posted (Tina) in All Posts on July-12-2008


We had more friends visit us today.

Katie and Ani, who I worked with at Rent.com, had business trips this week in Denver so they came early over the weekend to hang out. Both of them traveled to Florida to see Ella in the NICU when she was only only 2-3 months old. She was still very sick and had lots of hospital days ahead of her. It was fun for them to see her now that she is at home and on a progressively positive path.

While Josh watched Ella, I met up with my friends for lunch. It was nice to just go out and have a normal lunch at a restaurant. Later, we came back home and all hung out with Ella. Then, Josh watched her again while the girls went out for dinner. It felt like a true day off, a real break from taking care of Ella.

It’s just means a lot to see my friends from work. I miss them so much! We worked together for so many years; it’s just weird that I don’t get to see them on a regular basis. I love that they came out early to visit with me, Josh and Ella.

We will get to hang out tomorrow too, which is nice. Ani is threatening to beat Josh at Wii boxing. We’ll have to see how that turns out.