Nope, I’m not talking about ice cream. Last night was rough for Ella…and Mom. We got very little sleep.

Unfortunately, the lack of beauty sleep led to a cranky Bun throughout the day. She sounds congested again, so she may have caught another cold.

Ella did take lots of little naps today in between trying to work on her feeding. She took around 90ccs total out of the bottle. She has such a desire to feed via the bottle and is doing really well getting the hang of it. If it weren’t for all the air she swallows and the grief it causes her each time, I think she would be further along. Even though we vent her g-tube at the same time, it does not eliminate the episodes of pain that she has to endure.

When we get a chance to go to the pediatrician next month, we are going to ask about other foods we can introduce for Ella. We have to be careful because of her fluid issues, but it just seems that the oral stimulation from her taste buds is so enjoyable to her. Maybe foods with more texture could also provide more calories and not cause the gas pains.

We were supposed to have an appointment today with the OT to work on feeding issues, but the therapist was ill. But we did discuss the strategies of what we have been doing. For example, I asked about other types of bottles. He told us that the one we are using is one he normally recommends and he doesn’t want us changing it on Ella while she is making forward progress. We are hoping that we can get some more hands on training next week.

I’m excited that it is the weekend. This means that I might be able to get more sleep!

We pray that Ella’s weekend will prove to be restful, that she will gain strength and that her health will improve. We’re so blessed to have our little Bun.

Psalm 119:148
My eyes stay open through the watches of the night,
that I may meditate on your promises.

Nope, I’m not talking about ice cream. Last night was rough for Ella…and Mom. We got very little sleep.

Unfortunately, the lack of beauty sleep led to a cranky Bun throughout the day. She sounds congested again, so she may have caught another cold.

Ella did take lots of little naps today in between trying to work on her feeding. She took around 90ccs total out of the bottle. She has such a desire to feed via the bottle and is doing really well getting the hang of it. If it weren’t for all the air she swallows and the grief it causes her each time, I think she would be further along. Even though we vent her g-tube at the same time, it does not eliminate the episodes of pain that she has to endure.

When we get a chance to go to the pediatrician next month, we are going to ask about other foods we can introduce for Ella. We have to be careful because of her fluid issues, but it just seems that the oral stimulation from her taste buds is so enjoyable to her. Maybe foods with more texture could also provide more calories and not cause the gas pains.

We were supposed to have an appointment today with the OT to work on feeding issues, but the therapist was ill. But we did discuss the strategies of what we have been doing. For example, I asked about other types of bottles. He told us that the one we are using is one he normally recommends and he doesn’t want us changing it on Ella while she is making forward progress. We are hoping that we can get some more hands on training next week.

I’m excited that it is the weekend. This means that I might be able to get more sleep!

We pray that Ella’s weekend will prove to be restful, that she will gain strength and that her health will improve. We’re so blessed to have our little Bun.

Psalm 119:148
My eyes stay open through the watches of the night,
that I may meditate on your promises.

The Bun had a good day and she’s really taking to the bottle (Praise God!!) She took as much as 60ccs during one feeding today which was really exciting.

We were also able to increase the volume on bolus feeds to 60ccs. She does cough and retch a bit, but we need to get the food in her so she can gain weight.

She also took another solid 4 hour nap today with part of that time sleeping on Grandma. Hopefully she sleeps through the night OK considering all the rest she’s already had.

When I was done with work today, I let Tina and Grandma go off together so Ella and I had some one-on-one time. I’m still in awe that our girl is really here with us. Just having this time with her is so precious and it means so much.

We are truly blessed.

Just the Bun and me
for alone time tonight
Mom and Grandma
escaped out of sight

Ella and I
we had great fun
reading some books
and tickling the tum

Stories of feet
and ABC’s
Dr. Seuss is the best
Miss Ella agrees

From Aunt Annie’s Alligator
To a Zizzer-Zazzer-Zuzz
Left feet and right feet
and fur feet with fuz

Some swinging involved
and holding with care
surprises in diapers
and grabbing chest hair

Ella Renae
She’s a gift from above
I have never before
experienced such love

From the top of her head
to the tips of her toes
every day that goes by
greater my love grows

She’s so special to many
this sweet little girl
lots of eyes have seen her
from around the world

Thank you to all
for continuing to pray
it makes a big difference
each and every day

Praising God every moment
for each breath she takes
made perfect by Him
without any mistakes

Thank you Lord for The Bun
she’s a gift without measure
taking care of her is great work
but ultimately, our pleasure

Our Faith is in you
We trust every day
that wisdom will be granted
to lead Ella the right way

I pray the Lord Bless her
and grow her up strong
She is yours dear Jesus
to you she belongs

The Bun had a good day and she’s really taking to the bottle (Praise God!!) She took as much as 60ccs during one feeding today which was really exciting.

We were also able to increase the volume on bolus feeds to 60ccs. She does cough and retch a bit, but we need to get the food in her so she can gain weight.

She also took another solid 4 hour nap today with part of that time sleeping on Grandma. Hopefully she sleeps through the night OK considering all the rest she’s already had.

When I was done with work today, I let Tina and Grandma go off together so Ella and I had some one-on-one time. I’m still in awe that our girl is really here with us. Just having this time with her is so precious and it means so much.

We are truly blessed.

Just the Bun and me
for alone time tonight
Mom and Grandma
escaped out of sight

Ella and I
we had great fun
reading some books
and tickling the tum

Stories of feet
and ABC’s
Dr. Seuss is the best
Miss Ella agrees

From Aunt Annie’s Alligator
To a Zizzer-Zazzer-Zuzz
Left feet and right feet
and fur feet with fuz

Some swinging involved
and holding with care
surprises in diapers
and grabbing chest hair

Ella Renae
She’s a gift from above
I have never before
experienced such love

From the top of her head
to the tips of her toes
every day that goes by
greater my love grows

She’s so special to many
this sweet little girl
lots of eyes have seen her
from around the world

Thank you to all
for continuing to pray
it makes a big difference
each and every day

Praising God every moment
for each breath she takes
made perfect by Him
without any mistakes

Thank you Lord for The Bun
she’s a gift without measure
taking care of her is great work
but ultimately, our pleasure

Our Faith is in you
We trust every day
that wisdom will be granted
to lead Ella the right way

I pray the Lord Bless her
and grow her up strong
She is yours dear Jesus
to you she belongs

The Bun had a great night of sleep last night. She slept from 8pm until 4:30am (8.5 hours) before she stirred. So although the schedule isn’t great for me (she has feeds starting at 10:30pm and meds due at midnight), I can’t blame the Bun when she is willing to sleep 8+hours at a time.

This morning was a bit rough…

…but the afternoon was better.

Although we still encountered the same general feeding issues today (coughing and retching), the biggest milestone today was that she took 70ccs from the bottle in only 2 sessions. I can’t tell you how impressed we are at her progress. I am sure that she will hit plateaus along the way, but I can’t believe that she is even interested in feeding orally. The last feeding session today truly went off without a hitch – - she didn’t cough or retch once and then just fell asleep. It was just perfect and gives me so much hope that someday she will be able to do it all orally.

For some reason, Ella was more sleepy today than normal. She took a 4 hour nap. This is about the same time last week that this happened. As some of you suggested, maybe they are just growth spurts that require the extra beauty sleep.

Grandma Eusey has been having a good time with Bun too. More than that, we have really appreciated the help with preparing meals, cooking and cleaning. It is nice to have family support!

We did not have a chance to try a walk today because it was very cold. I’m hoping the weather improves so that we can try again soon.

And with each passing day, we love the Bun even more. We keep reminding ourselves that He has a plan and that we need to trust Him that all the details will fall into place, according to His will.

Psalm 31:19
How great is your goodness,
which you have stored up for those who fear you,
which you bestow in the sight of men
on those who take refuge in you.

The Bun had a great night of sleep last night. She slept from 8pm until 4:30am (8.5 hours) before she stirred. So although the schedule isn’t great for me (she has feeds starting at 10:30pm and meds due at midnight), I can’t blame the Bun when she is willing to sleep 8+hours at a time.

This morning was a bit rough…

…but the afternoon was better.

Although we still encountered the same general feeding issues today (coughing and retching), the biggest milestone today was that she took 70ccs from the bottle in only 2 sessions. I can’t tell you how impressed we are at her progress. I am sure that she will hit plateaus along the way, but I can’t believe that she is even interested in feeding orally. The last feeding session today truly went off without a hitch – - she didn’t cough or retch once and then just fell asleep. It was just perfect and gives me so much hope that someday she will be able to do it all orally.

For some reason, Ella was more sleepy today than normal. She took a 4 hour nap. This is about the same time last week that this happened. As some of you suggested, maybe they are just growth spurts that require the extra beauty sleep.

Grandma Eusey has been having a good time with Bun too. More than that, we have really appreciated the help with preparing meals, cooking and cleaning. It is nice to have family support!

We did not have a chance to try a walk today because it was very cold. I’m hoping the weather improves so that we can try again soon.

And with each passing day, we love the Bun even more. We keep reminding ourselves that He has a plan and that we need to trust Him that all the details will fall into place, according to His will.

Psalm 31:19
How great is your goodness,
which you have stored up for those who fear you,
which you bestow in the sight of men
on those who take refuge in you.

Ella had a great night of sleep, but for some reason, was fussy most of the morning. Then she realized that it was almost time to go see Dr. Kays, so she opted to behave for a bit (she always puts on her best for him).

Our appointment time was good. We went ahead and changed out Ella’s g-tube for a smaller one. Actually, Josh went ahead and changed out the tube, with the nurse practitioner supervising. Yikes – - that is not something for me, so I am glad that Josh doesn’t mind doing it!

The Mic-Key g-tube has a balloon inside that is inflated which keeps it in place. Before, it was inflated with 5ccs, so today we decided to inflate it to only 3ccs.

If you remember, the radiology test recently showed that the balloon part of the g-tube might have been occluding the antrum (lower portion of the stomach closest to the pylorus). Since her feeding issues seem volume related, we are hoping that the smaller tube along with the smaller balloon will give more room in her belly and will therefore have a positive effect for her feeding issues. Only time will tell.

Also, the nurse practitioner had to burn off the granulation tissue. Thankfully, this is not painful for Ella. I think it is more painful to watch!

We are scheduled to see Dr. Kays next week. If the feeding issues do not improve, we are considering an increase in her current medication, Reglan. Reglan increases muscle contractions in upper digestive tract. This speeds up the rate at which the stomach empties into the intestines. Based on her weight, she could take more of it.

The focus is on the feeding issues so much not only because of the inconvenience and discomfort to Ella, but also because she weighed in at the same weight, yet 2 weeks has passed. It is common for CDH babies to have a tough time with weight gain, so I should expect this challenge.

When I thought about it today, it makes sense because Ella is supposed to take 550ccs each day and we have had a tough time meeting that requirement lately with all her feeding issues. Also, she is only on 24 calorie food so the density might need to be increased. But right now, we are trying to identify what is causing discomfort and retching before we look to change the food in any way.

This afternoon when we returned from the doctor, Ella was in a great mood. She was so smiley! It was nice to see. Who knows, maybe the change in g-tube really did make a difference to her. Again, only time will tell.

Tonight there were severe thunderstorms in central Florida and a tornado watch. When we were hanging out, all of a sudden the electricity went out. The drill that Josh went through the first night that Ella was ever home with us (where Josh thought there was an emergency and Ella just needed her diaper changed), paid off. Immediately, Josh jumped up from his chair where he was eating dinner, and ran into the bedroom to grab the portable oxygen tank. He successfully transitioned Ella’s oxygen within a matter of seconds. Thank goodness!

Seeing Ella in such a great mood makes me long for the days when Ella is stronger. When she is feeling good, she is just so happy. We just need to keep holding on to the hope that she will grow and get strong.

One last thing to share: God provided a tremendous blessing while we were exiting the office of Dr. Kays. Another CDH patient was there for her check-up. She is 9 years old and she looked great with her ponytail and big smile. We spoke with the family briefly and it was so great to see this girl grown up. You could barely notice the scars across her neck from ECMO.

Also, it was neat to experience a 9 year old CDH survivor that was looking at Ella with eyes of compassion and sympathy. It was as if there was an instant connection since they had both survived the same birth defect and had matching scars on their necks.

Immediately, Josh got teary-eyed. We looked at each other and knew that it was a specific arrangement by Him to be blessed.

Galatians 6:9
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.

Ella had a great night of sleep, but for some reason, was fussy most of the morning. Then she realized that it was almost time to go see Dr. Kays, so she opted to behave for a bit (she always puts on her best for him).

Our appointment time was good. We went ahead and changed out Ella’s g-tube for a smaller one. Actually, Josh went ahead and changed out the tube, with the nurse practitioner supervising. Yikes – - that is not something for me, so I am glad that Josh doesn’t mind doing it!

The Mic-Key g-tube has a balloon inside that is inflated which keeps it in place. Before, it was inflated with 5ccs, so today we decided to inflate it to only 3ccs.

If you remember, the radiology test recently showed that the balloon part of the g-tube might have been occluding the antrum (lower portion of the stomach closest to the pylorus). Since her feeding issues seem volume related, we are hoping that the smaller tube along with the smaller balloon will give more room in her belly and will therefore have a positive effect for her feeding issues. Only time will tell.

Also, the nurse practitioner had to burn off the granulation tissue. Thankfully, this is not painful for Ella. I think it is more painful to watch!

We are scheduled to see Dr. Kays next week. If the feeding issues do not improve, we are considering an increase in her current medication, Reglan. Reglan increases muscle contractions in upper digestive tract. This speeds up the rate at which the stomach empties into the intestines. Based on her weight, she could take more of it.

The focus is on the feeding issues so much not only because of the inconvenience and discomfort to Ella, but also because she weighed in at the same weight, yet 2 weeks has passed. It is common for CDH babies to have a tough time with weight gain, so I should expect this challenge.

When I thought about it today, it makes sense because Ella is supposed to take 550ccs each day and we have had a tough time meeting that requirement lately with all her feeding issues. Also, she is only on 24 calorie food so the density might need to be increased. But right now, we are trying to identify what is causing discomfort and retching before we look to change the food in any way.

This afternoon when we returned from the doctor, Ella was in a great mood. She was so smiley! It was nice to see. Who knows, maybe the change in g-tube really did make a difference to her. Again, only time will tell.

Tonight there were severe thunderstorms in central Florida and a tornado watch. When we were hanging out, all of a sudden the electricity went out. The drill that Josh went through the first night that Ella was ever home with us (where Josh thought there was an emergency and Ella just needed her diaper changed), paid off. Immediately, Josh jumped up from his chair where he was eating dinner, and ran into the bedroom to grab the portable oxygen tank. He successfully transitioned Ella’s oxygen within a matter of seconds. Thank goodness!

Seeing Ella in such a great mood makes me long for the days when Ella is stronger. When she is feeling good, she is just so happy. We just need to keep holding on to the hope that she will grow and get strong.

One last thing to share: God provided a tremendous blessing while we were exiting the office of Dr. Kays. Another CDH patient was there for her check-up. She is 9 years old and she looked great with her ponytail and big smile. We spoke with the family briefly and it was so great to see this girl grown up. You could barely notice the scars across her neck from ECMO.

Also, it was neat to experience a 9 year old CDH survivor that was looking at Ella with eyes of compassion and sympathy. It was as if there was an instant connection since they had both survived the same birth defect and had matching scars on their necks.

Immediately, Josh got teary-eyed. We looked at each other and knew that it was a specific arrangement by Him to be blessed.

Galatians 6:9
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.

Ella had a great night of sleep last night, thus Mom had a great night of sleep. She slept solid until 5am, I changed her diaper and repositioned her and she went back to sleep until 6:30am. That was fantastic for her!

Today was a tough day for me personally. For the past 6 weeks, I was using my remaining maternity leave to be with Ella. This morning, I gave my 2 week notice.

For some, it might seem like a dream come true. However, I have never pictured myself being a stay-at-home Mom.

The last several weeks we have prayed about the right decision. Finances are tough being out in Gainesville to begin with much less having me not provide income.

But the prayers kept confirming that regardless of my own self desires, the right decision was to quit my job and stay home with Ella for a season. We feel that she needs this in order to thrive.

I have been at my job for 6.5 years and it is a great job, thus it was tough for me to quit.

Grandma Eusey was around to help out with Ella, so I could properly give notice. It helped that Ella was full of smiles. It was just fun to be around her. As I was working, I could see them in the background having a good time.

This is why it was so strange when things turned this afternoon. Ella’s endurance started to get low. Everything seemed like it was tough for her, so almost anything made her fussy.

We tried oral feeding again. Several times, she was not interested. But throughout the day, she took 40ccs again. It just seemed like it was a lot more work and more sessions to get the 40ccs. That’s okay, it is still great progress for her.

In the afternoon, we tried another walk. It was okay initially and then she started to cough. Once she was not able to catch her breath, she became frustrated and inconsolable. After having her turn a lovely blue/purple shade, we turned right back around and headed for the apartment. We hope to try again soon.

By the evening, she was overtired and was not consolable. Josh was working with headphones on in the other room and had to pause several times, just to check and make sure everything was okay. She was so upset and was crying so loud, the oxygen sat at double the normal amount for most of the afternoon and evening (1 liter).

Today was a day of highs and lows emotionally. It would warm my heart when she was smiling and having such a good time. Yet, quitting my job and dealing with her numerous meltdowns was tough.

As I end the day, I am reminded that although things look seemingly impossible and sometimes bleak from my perspective, my job is to trust and obey God who ordains everything.

Thank you for the continued prayer support for all three of us.

Psalm 37:5
Commit your way to the LORD; trust in him.

Ella had a great night of sleep last night, thus Mom had a great night of sleep. She slept solid until 5am, I changed her diaper and repositioned her and she went back to sleep until 6:30am. That was fantastic for her!

Today was a tough day for me personally. For the past 6 weeks, I was using my remaining maternity leave to be with Ella. This morning, I gave my 2 week notice.

For some, it might seem like a dream come true. However, I have never pictured myself being a stay-at-home Mom.

The last several weeks we have prayed about the right decision. Finances are tough being out in Gainesville to begin with much less having me not provide income.

But the prayers kept confirming that regardless of my own self desires, the right decision was to quit my job and stay home with Ella for a season. We feel that she needs this in order to thrive.

I have been at my job for 6.5 years and it is a great job, thus it was tough for me to quit.

Grandma Eusey was around to help out with Ella, so I could properly give notice. It helped that Ella was full of smiles. It was just fun to be around her. As I was working, I could see them in the background having a good time.

This is why it was so strange when things turned this afternoon. Ella’s endurance started to get low. Everything seemed like it was tough for her, so almost anything made her fussy.

We tried oral feeding again. Several times, she was not interested. But throughout the day, she took 40ccs again. It just seemed like it was a lot more work and more sessions to get the 40ccs. That’s okay, it is still great progress for her.

In the afternoon, we tried another walk. It was okay initially and then she started to cough. Once she was not able to catch her breath, she became frustrated and inconsolable. After having her turn a lovely blue/purple shade, we turned right back around and headed for the apartment. We hope to try again soon.

By the evening, she was overtired and was not consolable. Josh was working with headphones on in the other room and had to pause several times, just to check and make sure everything was okay. She was so upset and was crying so loud, the oxygen sat at double the normal amount for most of the afternoon and evening (1 liter).

Today was a day of highs and lows emotionally. It would warm my heart when she was smiling and having such a good time. Yet, quitting my job and dealing with her numerous meltdowns was tough.

As I end the day, I am reminded that although things look seemingly impossible and sometimes bleak from my perspective, my job is to trust and obey God who ordains everything.

Thank you for the continued prayer support for all three of us.

Psalm 37:5
Commit your way to the LORD; trust in him.