Today was an overall good day for Ella. She was in a happy mood and smiled a lot. That makes the day more fun.

She did exercise her independence when we decided to go to the physical therapist. As soon as the session started, Ella decided that she wanted nothing to do with it. It was uncomfortable and she just didn’t want any part of it. In a proactive manner, I decided to increase her oxygen flow, but even after lots of calming and cuddling, I could barely get her to settle down. Finally after working herself up real good for 20+ minutes, she simply wore herself out and fell fast asleep in my arms. She didn’t even move much when placing her in the chair to drive home.

The PT acknowledged that maybe she moved too quickly today for Ella. Also, she noted that this needs to be a very slow process and felt that even bringing Ella for this session is another small step in the right direction. I did let her know that this is typical behavior for Ella whenever she has to try something new. Just like when we placed her in the car for the initial time, she had a melt down. Hopefully, the more exposure to the environment and the PT, the more Ella will get used to the idea.

The PT allowed us to borrow this chair that will help Ella sit up. Since Ella had such a meltdown, we were not able to try it at her office. However, later in the day, I was able to try the chair at home. Situated with the boppy around it, I can adjust the angle of the chair. I started with Ella being in a reclined position. Over several minutes and lots of distraction, I was able to prop it higher so that she was in a more upright position. She tolerated it for about 15 minutes total.

We did not make much progress with feeding today, although she still took one bottle for 55ccs. That is still really good work for her. All of the rest of the feeding sessions ended up at 15-20ccs, but at least we had one stronger session.

Today was the first ever CDH Awareness Day. It is so good to see that organizations are cropping up to make a difference. One year ago when we received this diagnosis, there were few organizations, websites, blogs, etc. Just this past year, it has grown tremendously. Although we were not able to be out in public participating, we hope to be more involved in the coming years.

I just keep looking at our daughter in awe of what she has endured and who she is today. God made her perfect. She is so beautiful. I love her so much. We’re so thankful for her.

We’re continuing to pray for direction on the best way to make it back to Colorado. We have a decision to make in the next day regarding timing and ask that He would give us divine guidance.

We’re so thankful that God provided the resources for us to make the trip to Florida and give Ella Renae the best chance at life. And now we’re excited to think about going back home to Colorado and enjoying our life together as a family with all the comforts of home.

Thanks for the support and prayers.

Today was an overall good day for Ella. She was in a happy mood and smiled a lot. That makes the day more fun.

She did exercise her independence when we decided to go to the physical therapist. As soon as the session started, Ella decided that she wanted nothing to do with it. It was uncomfortable and she just didn’t want any part of it. In a proactive manner, I decided to increase her oxygen flow, but even after lots of calming and cuddling, I could barely get her to settle down. Finally after working herself up real good for 20+ minutes, she simply wore herself out and fell fast asleep in my arms. She didn’t even move much when placing her in the chair to drive home.

The PT acknowledged that maybe she moved too quickly today for Ella. Also, she noted that this needs to be a very slow process and felt that even bringing Ella for this session is another small step in the right direction. I did let her know that this is typical behavior for Ella whenever she has to try something new. Just like when we placed her in the car for the initial time, she had a melt down. Hopefully, the more exposure to the environment and the PT, the more Ella will get used to the idea.

The PT allowed us to borrow this chair that will help Ella sit up. Since Ella had such a meltdown, we were not able to try it at her office. However, later in the day, I was able to try the chair at home. Situated with the boppy around it, I can adjust the angle of the chair. I started with Ella being in a reclined position. Over several minutes and lots of distraction, I was able to prop it higher so that she was in a more upright position. She tolerated it for about 15 minutes total.

We did not make much progress with feeding today, although she still took one bottle for 55ccs. That is still really good work for her. All of the rest of the feeding sessions ended up at 15-20ccs, but at least we had one stronger session.

Today was the first ever CDH Awareness Day. It is so good to see that organizations are cropping up to make a difference. One year ago when we received this diagnosis, there were few organizations, websites, blogs, etc. Just this past year, it has grown tremendously. Although we were not able to be out in public participating, we hope to be more involved in the coming years.

I just keep looking at our daughter in awe of what she has endured and who she is today. God made her perfect. She is so beautiful. I love her so much. We’re so thankful for her.

We’re continuing to pray for direction on the best way to make it back to Colorado. We have a decision to make in the next day regarding timing and ask that He would give us divine guidance.

We’re so thankful that God provided the resources for us to make the trip to Florida and give Ella Renae the best chance at life. And now we’re excited to think about going back home to Colorado and enjoying our life together as a family with all the comforts of home.

Thanks for the support and prayers.

Today was relaxing. We were able to secure late check out at the hotel and spent the morning being lazy together, all 3 of us.

Another exciting first feed of the day: once again, she took 75ccs via bottle. The other feeds did not turn out to be real successful, but we are excited that she did another entire bottle orally.

Regarding bottle feeding, we have a few goals to work towards. When we are feeing her via bottle, we are connected to her g-tube at the same time. This is to let any air out while she is eating. Eventually, we hope that she gets a better sucking technique and swallows less air, so that this step is not required.

Also, we hope to work up to her taking 4 bottles of 75 ccs each, per day. We know that she can do 1 bottle per day, but we need to work up to 4 bottles a day. And of course, she is still fed at night via a food pump to make up for the additional volume and give her some extra calories.

Finally, as she gets better technique, the food should go faster. Right now, it takes up to 30 minutes for her to finish the 75 ccs. It should take about 10 minutes once she has perfected it.

It will likely be a long time until she is able to eat enough orally during each day to not require a g-tube. And although we are a long way off, it is so encouraging to see her meet these small milestones.

We have physical therapy tomorrow afternoon. That will be our big event for the day.

We have noted that Ella’s face looks fuller too. In the past, this has not been a good sign. It typically means that she is retaining fluid. The biggest change we have made since past Tuesday is adding corn oil to her food at night. Although we did not see a drastic change, it is possible that it is slowly causing her to retain fluid. If she retains too much fluid, it begins to affect her respiratory status. This is what sent her back to the hospital 4 days after her initial release from the NICU. It is our hope and prayer that it is not affecting her fluid status and that she is truly just getting chubby cheeks!

It was so nice to getaway again this weekend. We are excited for the day when we can go home. Gainesville is a small town without the amenities of a large city, and being city people, we crave the comforts of a large city.

There are so many more services and places to go within the Denver metro area, so it won’t necessarily require a trip if we just want to get out of the house with Ella. Right now, it requires a 2 hour drive to any major city with interesting services and amenities.

We’re trying to enjoy our time in Florida, but admittedly, we are anxious to go back home. When we started this journey, we anticipated being here in Florida for 8-12 weeks. We could have never expected that Ella would stay in the hospital for 6+ months. And we know that it was the right decision to continue to stay for a time after her release from the hospital.

Now, we are praying for wisdom and guidance on when to go home to Denver. Also, how to get Ella back home to Denver. Please join us in praying that we would not be anxious, but rely on Him to reveal His plans to us.

Philippians 4:6
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Today was relaxing. We were able to secure late check out at the hotel and spent the morning being lazy together, all 3 of us.

Another exciting first feed of the day: once again, she took 75ccs via bottle. The other feeds did not turn out to be real successful, but we are excited that she did another entire bottle orally.

Regarding bottle feeding, we have a few goals to work towards. When we are feeing her via bottle, we are connected to her g-tube at the same time. This is to let any air out while she is eating. Eventually, we hope that she gets a better sucking technique and swallows less air, so that this step is not required.

Also, we hope to work up to her taking 4 bottles of 75 ccs each, per day. We know that she can do 1 bottle per day, but we need to work up to 4 bottles a day. And of course, she is still fed at night via a food pump to make up for the additional volume and give her some extra calories.

Finally, as she gets better technique, the food should go faster. Right now, it takes up to 30 minutes for her to finish the 75 ccs. It should take about 10 minutes once she has perfected it.

It will likely be a long time until she is able to eat enough orally during each day to not require a g-tube. And although we are a long way off, it is so encouraging to see her meet these small milestones.

We have physical therapy tomorrow afternoon. That will be our big event for the day.

We have noted that Ella’s face looks fuller too. In the past, this has not been a good sign. It typically means that she is retaining fluid. The biggest change we have made since past Tuesday is adding corn oil to her food at night. Although we did not see a drastic change, it is possible that it is slowly causing her to retain fluid. If she retains too much fluid, it begins to affect her respiratory status. This is what sent her back to the hospital 4 days after her initial release from the NICU. It is our hope and prayer that it is not affecting her fluid status and that she is truly just getting chubby cheeks!

It was so nice to getaway again this weekend. We are excited for the day when we can go home. Gainesville is a small town without the amenities of a large city, and being city people, we crave the comforts of a large city.

There are so many more services and places to go within the Denver metro area, so it won’t necessarily require a trip if we just want to get out of the house with Ella. Right now, it requires a 2 hour drive to any major city with interesting services and amenities.

We’re trying to enjoy our time in Florida, but admittedly, we are anxious to go back home. When we started this journey, we anticipated being here in Florida for 8-12 weeks. We could have never expected that Ella would stay in the hospital for 6+ months. And we know that it was the right decision to continue to stay for a time after her release from the hospital.

Now, we are praying for wisdom and guidance on when to go home to Denver. Also, how to get Ella back home to Denver. Please join us in praying that we would not be anxious, but rely on Him to reveal His plans to us.

Philippians 4:6
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Ella started the day feeding well, and Tina and I finished the day feeding well.

Miss Ella rocked down a whole bottle of food today!!! Yup, she took in the entire 75ccs during her 9 o’clock feed!!! What an incredibly exciting milestone. It was a bit of a bonus for me too because I just happened to be the one feeding her =). This is a huge first step towards our goal of having her take in a whole bottle every time she eats. During her next feed though, she only did about 20ccs, but we are content with the overall forward progress she’s making.

Tina, Ella, and I just got back from dinner at Maggiano’s. “But Josh…”, you say. “There is no Maggiano’s in Gainesville.” Oh, you are so correct my friend. You see, we all had such a great time escaping Gainesville last week, that we decided to do it again. Only this time we ventured out to Jacksonville.

The drive out to Jacksonville was pretty uneventful, except for one green light. Well, it was a red light when Tina decided to take a drink of her iced coffee. It turned green right when she started to take a sip. Having no idea that she was even drinking from a large mouthed mug (she was in the back seat with Bun), I do what every normal driver does at a green light and hit the gas. Needless to say, Tina wasn’t too thrilled about the coffee all over the front of her white shirt, but at least she brought a sweater that she can wear over…oh…whoops…she just spilled formula from Ella’s g-tube on the sweater. Ahhh…good times.

So, what was our main draw to Jacksonville? I’ll give you one guess…yup…a mall. More specifically, the St Johns Town Center Mall which is an outdoor mall with a lot of chichi retail outlets. Not that we did any shopping (Ella did try and convince us that Louis Vuitton had baby clothes), but the fact that we could stroll around outside, in the fresh air, on a picture perfect day, with the Bun.

We started at one end of the mall and worked our way down to the other. We originally thought we were going to get some food to go from Maggiano’s, but we discovered they had an outdoor seating area which would accommodate us and minimize Ella’s exposure. What really made us feel comfortable about eating there was the corner they were able to tuck us into, and the fact that Tina could stroll Ella right to the table from outside, without even entering the main restaurant.

Ella handled herself well, and didn’t fuss too much, at least until her feeding time around 9pm. We were able to discreetly bolus feed her through her G-Tube which in turn gave her good reason to fall asleep. Tina and I were then able to finish up dinner, with Ella sleeping contently next to us. We had a fabulous time enjoying the moment and the food. Maggiano’s is my favorite Italian restaurant (chain), plus, we didn’t have to pay for dinner because one of Ella’s biggest fans hooked us up with a gift card (Thanks for the love Jeanie!!).

At this moment (1:00am), Tina is asleep next to me, and the Bun is asleep in her travel crib. We’re staying overnight in Jacksonville and will drive back to the apartment tomorrow.

Something that struck me during dinner tonight (this happens on a pretty regular basis), is really how far we’ve come, and what a true miracle Ella Renae is. It’s so hard for me to imagine all that we’ve been through. If we didn’t have this blog, with its daily record of events, I don’t know I would believe all we have been through. But we have…and we are so blessed to have gone through it.

Thank you again for staying with us during this journey. You faithfulness in support and prayer continues to be our strength. It means so much that you connect with us through the blog on a regular basis. May God Bless you and your family in your faithfulness to Him, and to us.

Psalm 100
A psalm. For giving thanks.
1 Shout for joy to the LORD, all the earth.

5 For the LORD is good and his love endures forever;
his faithfulness continues through all generations.

Ella started the day feeding well, and Tina and I finished the day feeding well.

Miss Ella rocked down a whole bottle of food today!!! Yup, she took in the entire 75ccs during her 9 o’clock feed!!! What an incredibly exciting milestone. It was a bit of a bonus for me too because I just happened to be the one feeding her =). This is a huge first step towards our goal of having her take in a whole bottle every time she eats. During her next feed though, she only did about 20ccs, but we are content with the overall forward progress she’s making.

Tina, Ella, and I just got back from dinner at Maggiano’s. “But Josh…”, you say. “There is no Maggiano’s in Gainesville.” Oh, you are so correct my friend. You see, we all had such a great time escaping Gainesville last week, that we decided to do it again. Only this time we ventured out to Jacksonville.

The drive out to Jacksonville was pretty uneventful, except for one green light. Well, it was a red light when Tina decided to take a drink of her iced coffee. It turned green right when she started to take a sip. Having no idea that she was even drinking from a large mouthed mug (she was in the back seat with Bun), I do what every normal driver does at a green light and hit the gas. Needless to say, Tina wasn’t too thrilled about the coffee all over the front of her white shirt, but at least she brought a sweater that she can wear over…oh…whoops…she just spilled formula from Ella’s g-tube on the sweater. Ahhh…good times.

So, what was our main draw to Jacksonville? I’ll give you one guess…yup…a mall. More specifically, the St Johns Town Center Mall which is an outdoor mall with a lot of chichi retail outlets. Not that we did any shopping (Ella did try and convince us that Louis Vuitton had baby clothes), but the fact that we could stroll around outside, in the fresh air, on a picture perfect day, with the Bun.

We started at one end of the mall and worked our way down to the other. We originally thought we were going to get some food to go from Maggiano’s, but we discovered they had an outdoor seating area which would accommodate us and minimize Ella’s exposure. What really made us feel comfortable about eating there was the corner they were able to tuck us into, and the fact that Tina could stroll Ella right to the table from outside, without even entering the main restaurant.

Ella handled herself well, and didn’t fuss too much, at least until her feeding time around 9pm. We were able to discreetly bolus feed her through her G-Tube which in turn gave her good reason to fall asleep. Tina and I were then able to finish up dinner, with Ella sleeping contently next to us. We had a fabulous time enjoying the moment and the food. Maggiano’s is my favorite Italian restaurant (chain), plus, we didn’t have to pay for dinner because one of Ella’s biggest fans hooked us up with a gift card (Thanks for the love Jeanie!!).

At this moment (1:00am), Tina is asleep next to me, and the Bun is asleep in her travel crib. We’re staying overnight in Jacksonville and will drive back to the apartment tomorrow.

Something that struck me during dinner tonight (this happens on a pretty regular basis), is really how far we’ve come, and what a true miracle Ella Renae is. It’s so hard for me to imagine all that we’ve been through. If we didn’t have this blog, with its daily record of events, I don’t know I would believe all we have been through. But we have…and we are so blessed to have gone through it.

Thank you again for staying with us during this journey. You faithfulness in support and prayer continues to be our strength. It means so much that you connect with us through the blog on a regular basis. May God Bless you and your family in your faithfulness to Him, and to us.

Psalm 100
A psalm. For giving thanks.
1 Shout for joy to the LORD, all the earth.

5 For the LORD is good and his love endures forever;
his faithfulness continues through all generations.

Ella was fussy a lot of the day, but I think it was because she had trouble napping. For some reason, she couldn’t get comfy. Once she finally took one in the afternoon, she woke up very happy and ready to face the world. My favorite part was when Pumps decided to come and see what was causing all the noise!

We had the OT come visit us today and he recommended giving her the next stage of nipple for the Dr. Brown’s bottle (Stage Two). You could definitely see a difference. The flow was quicker because Ella was having to do more work to keep up with the flow. When she was sucking on the bottle, you could see her nostrils flare more frequently. Several times she had to stop simply to catch her breath. Remember that the coordination of sucking, swallowing and breathing is all new to her.

The great news is that she took 120ccs total via bottle today, with another session at 45ccs. Although it feels slow, I can easily look back and see how much progress she is making since we started this in mid-February.

A nice surprise tonight: a local friend came by to see us and brought a pizza and garlic rolls to share! Sara, the leasing agent from our prior apartment community, has been tracking Ella’s progress for months now and is in love! She wanted to come and visit her.

I was so thankful that Ella had that much-needed nap earlier. She was in a great mood for Sara. Since Ella has been having stranger anxiety, we wanted to take things slow. We know it will not be the last time that Sara visits, so hopefully Ella can get to know her better each time.

I’m so glad it is Friday. Although I do not have the stress of a work week anymore, it does mean that Dad might kick in to let me have some extra zzzzs. Plus, it is family time. All of us can hang out together during each day. Because of this, I love the weekends.

I hope that everyone out there has a great weekend too. Thanks for the support and for loving our baby girl.

Ella was fussy a lot of the day, but I think it was because she had trouble napping. For some reason, she couldn’t get comfy. Once she finally took one in the afternoon, she woke up very happy and ready to face the world. My favorite part was when Pumps decided to come and see what was causing all the noise!

We had the OT come visit us today and he recommended giving her the next stage of nipple for the Dr. Brown’s bottle (Stage Two). You could definitely see a difference. The flow was quicker because Ella was having to do more work to keep up with the flow. When she was sucking on the bottle, you could see her nostrils flare more frequently. Several times she had to stop simply to catch her breath. Remember that the coordination of sucking, swallowing and breathing is all new to her.

The great news is that she took 120ccs total via bottle today, with another session at 45ccs. Although it feels slow, I can easily look back and see how much progress she is making since we started this in mid-February.

A nice surprise tonight: a local friend came by to see us and brought a pizza and garlic rolls to share! Sara, the leasing agent from our prior apartment community, has been tracking Ella’s progress for months now and is in love! She wanted to come and visit her.

I was so thankful that Ella had that much-needed nap earlier. She was in a great mood for Sara. Since Ella has been having stranger anxiety, we wanted to take things slow. We know it will not be the last time that Sara visits, so hopefully Ella can get to know her better each time.

I’m so glad it is Friday. Although I do not have the stress of a work week anymore, it does mean that Dad might kick in to let me have some extra zzzzs. Plus, it is family time. All of us can hang out together during each day. Because of this, I love the weekends.

I hope that everyone out there has a great weekend too. Thanks for the support and for loving our baby girl.

The day started with a visit from Nurse Michelle. It was nice to see her. We walked across the street for a coffee while Josh watched Ella for a bit. It was refreshing to have a mini escape.

Ella had a great day for feeds. She took the bottle for 4 of her feeds, totaling 105ccs (approximately 3.5 ounces). She took 45ccs at once on the first feed this morning! That is her second best. Last Saturday, she took 50ccs at once. That gives us such hope. All of this requires lots and lots of patience, but Ella is slowly making progress with her feeds.

Another bit of good news: we have gone two nights with the addition of corn oil and have not seen any significant changes. Yesterday, her stools were a bit looser but today was normal. So we are hoping that the only long term effect is weight gain!

Also, I did some of the PT exercises with her today. The first few times, she was more receptive. We focused on her head control and she did really well. As the day continued, she was less tolerant and started to cry hard if I made her work. Oh well, at least we had a couple of good sessions. Hopefully if we are persistent and do this each day, she will slowly get stronger and it won’t be quite so much work.

Ella had a great time in the bath this evening. I think her favorite part is afterward when she is all clean, warm and gets cuddled in her towel. She is so smiley.

We took Ella on a short walk this evening as the sun was setting. Although the walk was short, Ella seems to be getting better and better with tolerating walks. I like it when we can take her in the car or have her go on a short walk. It gets her out in the real world and just slowly gives her some exposure.

I read today about another CDH baby girl that had her repair surgery. Looking at the photos and reading the details made it all come back to me. It seems so distant, and yet it was just yesterday. I don’t know the family, but I lifted up their baby girl to the Lord and asked for His guidance and protection for her and them. If you think about it, please say a prayer for this family.

Psalm 23
The LORD is my shepherd, I shall not be in want.

Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.

The day started with a visit from Nurse Michelle. It was nice to see her. We walked across the street for a coffee while Josh watched Ella for a bit. It was refreshing to have a mini escape.

Ella had a great day for feeds. She took the bottle for 4 of her feeds, totaling 105ccs (approximately 3.5 ounces). She took 45ccs at once on the first feed this morning! That is her second best. Last Saturday, she took 50ccs at once. That gives us such hope. All of this requires lots and lots of patience, but Ella is slowly making progress with her feeds.

Another bit of good news: we have gone two nights with the addition of corn oil and have not seen any significant changes. Yesterday, her stools were a bit looser but today was normal. So we are hoping that the only long term effect is weight gain!

Also, I did some of the PT exercises with her today. The first few times, she was more receptive. We focused on her head control and she did really well. As the day continued, she was less tolerant and started to cry hard if I made her work. Oh well, at least we had a couple of good sessions. Hopefully if we are persistent and do this each day, she will slowly get stronger and it won’t be quite so much work.

Ella had a great time in the bath this evening. I think her favorite part is afterward when she is all clean, warm and gets cuddled in her towel. She is so smiley.

We took Ella on a short walk this evening as the sun was setting. Although the walk was short, Ella seems to be getting better and better with tolerating walks. I like it when we can take her in the car or have her go on a short walk. It gets her out in the real world and just slowly gives her some exposure.

I read today about another CDH baby girl that had her repair surgery. Looking at the photos and reading the details made it all come back to me. It seems so distant, and yet it was just yesterday. I don’t know the family, but I lifted up their baby girl to the Lord and asked for His guidance and protection for her and them. If you think about it, please say a prayer for this family.

Psalm 23
The LORD is my shepherd, I shall not be in want.

Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.