Matthew 1:20-23 (NIV)
But after he had considered this, an angel of the Lord appeared to him in a dream and said, “Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.”

All this took place to fulfill what the Lord had said through the prophet: “The virgin will be with child and will give birth to a son, and they will call him Immanuel”—which means, “God with us.”

Oh…and Happy Christmas Eve too. =)

Ella has been running a good streak for awhile now. She’s sleeping pretty solid through the night (only waking up a couple of times), her heart rate and saturations are in check, and clinically she’s quite the happy child.

Her food density was increased to 26k/cal starting today, and she’s tolerated all the feeds without issue (Praise God!).

In preparation for Christmas day, Grandma gave our sweet little Bun a hair cut. She looks so cute with her new hairdo.

We also messed up the kitchen pretty good making some holiday cookies. Most turned out well, but we botched the fudge when we doubled the amount of chocolate chips by mistake (doh!). Very happy to report that this is the most dramatic item of the day.

Oh, it’s so good to be home and not in the hospital. We know there’s always a possibility of Ella going back, but we’re very content to be where we are for the holidays.

Celebrating our sweet girl and the birth of our Savior!

Ella slept well through the night. She only woke up a couple times which is always a blessing. She had a good day overall too.

Tina and I spent the morning hanging out with Ella and keeping the dogs reined in. We enjoyed playing with Ella and the dogs. This afternoon, Tina took the puppy to the vet for her shots, and then dropped the dogs off at Grandpa’s house.

We also had an unexpected visitor today: Tina’s Aunt Char had a layover in Denver, due to a missed flight, so she’s spending the night here so she can catch her 6am flight.

Kelly came home today from visiting family and we all enjoyed each others company. We even played a round of cards (Phase 10) together.

Looking forward to the short work week and celebrating the birth of our Savior with our sweet child at home.

Praise God for where He has us.

P.S. Please continue to pray for Olivia and her family.

Kelly went home to Colorado Springs to be with her family so it was a nice, lazy day with just the Bun and the dogs. Yes, we have a new little one that has joined our family here in Colorado: a mini female doxie. She does not officially have a name, however I’m sure a final decision will be made soon.

Manny was so excited to see another dog last night. He was in a bit of shock. It is sad though because you can tell that he is confused and still looking for Joslin. You can tell that he still misses her.

Last night, the puppy did incredibly well and slept solid for the night. Actually, Manny was the one that kept waking us up! He gets excited with the cats and kept climbing in and out of the covers to check out the scene. Needless to say, we were both a bit tired today.

As expected, the puppy had a couple of accidents today while we had her confined in our kitchen area. But then, we also had a few successes on the potty training pads too. It was exciting to see her make an association after just a few times and successfully go on the potty training pads! Of course, we would prefer to take her outside on the grass, but it is covered with snow and freezing! The potty training pads we purchased actually have a grass scent and they recommend slowly moving the pads closer and closer to the outside door.

At times throughout today, Manny seemed a bit lethargic. He would go off into the other room and cuddle up on the couch to go to sleep. He was not in a social mood and seemed bummed. In these moments, it was hard not to get a bit sad about Joslin.

Several times, the puppy would want to play and Manny would ignore her. Thankfully, a few times he decided he was up for it and would run around and play. The new puppy has a great temperament and a great disposition; she is playful, outgoing, sweet, and cuddly. You can tell that her and Manny will end up being good buddies.

I think my Dad is really going to bond with her too. Tomorrow, he gets to meet her for the first time. We have an appointment at the vet to get her a second round of shots.

Ella’s day was low key. With all the extra activity with the dogs, the camera was not focused on her. By the end of the night, we realized that we only grabbed the camera when she was snoozing!

We’re definitely glad that it is just Saturday and that we have another day of rest before returning to work.

Thanks for all the support and prayers.

But too tired to write. We’ll fill ya’ll in tomorrow. Enjoy the pics of the Bun for now.

What a nice lazy Sunday with the Bun. Except for the time I spent cleaning up the basement. =)

It was so cold today (high of 10 degrees!) which is why we were all content to stay inside.

We started out watching a little Micky Mouse Clubhouse which included some good cuddle time with my girl. There was also a nice virtual family gathering when my mom I video chatted via Skype. Ella’s Great Grandparents were at my moms at the time, so they got a chance to see Ella in action. I wish that we could make the trek to Cali so we could see everyone in person, but we’ll take what we can get for now. Hopefully next year when Ella is (hopefully) off oxygen and her immune system is stronger we’ll be able to go.

Can I be honest with you…I have moments where I wish Ella was just a normal 16 month old. She’d be running around the house, talking, eating, not retching, playing with her toys, and getting into things she shouldn’t. We could take trips, go to public places, and see our friends that have other kids instead of being confined to our home. I could show my kid off at work, and take her to the zoo, and eat ice cream together with her.

These thoughts especially flood through my mind when I’m out and about and see a “normal” 16 month old. It reminds me just how far behind my precious child is. And that’s hard to see.

But…

When I receive an email from a family who just found out that their daughter was diagnosed with CDH, I remember the hope my daughter brings.

When a friend tells me how (trying not to cry here) the first thing she does every day, before anything else, is to pray for Ella, I remember how God has used our sweet child to draw people close to Him.

When an 11 year old girl comments on the blog to let us know that she’s praying for Ella, I see the Kingdom of God being impacted now, and in the future.

When I think back and ponder the events of the last 508+ days, I am overwhelmed by what we’ve gone through, and would be in denial if there wasn’t documented proof of the events. But I’ve also experienced the overwhelming presence of God in ways that I had never previously encountered.

If Ella wasn’t who she was, perfectly formed by God, you would not be reading these words right now. This would be just some other blog with pictures of our kid and comments about how cute she is. But instead, you have traveled with us through the heaviest times of our lives, and prayed us through it, cried along with us, and comforted us with your words and presence.

Ella was no accident, and when I consider all that our Heavenly Father Has done by her, I rejoice in the blessing that she is.

For these reasons, I will be content with where my sweet child is, knowing full well that God is in control and he has her right where he wants her.

Thank you Jesus for blessing us with this incredible girl. Praise you for allowing us the privilege of being her parents. We trust in your plan Lord, and surrender our lives to you. May Ella continue to have an impact for your Kingdom each and every day. In your Holy Name. Amen.

P.S. Happy Birthday (Dec 15th) to Bun’s Mommy! God knew what he was doing when he chose you to be Ella’s mom.

Ella’s trend over the last couple days has included some subtle hints to indicate that she’s getting fluid overloaded. As Kelly was with her throughout the day, the signs were becoming more prominent. Clinically she tends to be a bit more fussy, which can be hard to key on when it relates to fluid, but she also tends to cough more as well.

The more accurate tale of the tape can be seen in her “numbers”. We’ve observed an elevated heart rate while she’s sleeping, lower O2 saturations, and a sudden increase in weight over the last week (when the nurse came this morning, she weighed .31 kilos more). These signs tend to point to an increase in fluid retention.

Her BUN yesterday was 19…which is trending in the wrong direction from the 31 we saw a few weeks ago.

Armed with all this info, we felt Ella was going to need a dose of Bumex to push her in the right direction. After consulting with the pulmonologist, he concurred.

We gave her a dose this afternoon around 4:30, and her urine output has picked up. So glad we have this big gun diuretic to use once and awhile to help Ella get out of these valleys. Hopefully we’ll get better at catching the trend sooner so we can stop her before she slides way down the mountain.

We’ll see how she does tomorrow and if needed we’ll give her another dose of Bumex. We don’t want to push her too hard in the drying out direction, but we want to make it count too.

I have witnessed Ella do a couple new things over the last few days which really impressed me.

The first would be the grabbing of her binky on her own, followed up with a grab of her bean bag frog to cover it up! Kelly has been working with Ella on getting the binky in her mouth the right way on her own.

The second is her signing daddy! At least it seems like she’s signing daddy. It’s hard to tell for sure but when I walked over to talk to her tonight, she put her thumb to her forehead just like the daddy sign. One could argue that she’s just sticking her fingers on her head, but I’ll take it for what it is and just assume she’s signing daddy =).

Life has allowed us to catch our breath a bit, so we’re hoping to decorate the house and clean up the basement tomorrow. Here’s hoping that happens anyway…hehe.

Always great to have you following along with us on this journey. Your words of encouragement, thoughts, and prayers mean more that you know.

Thanks for loving our girl along with us!

Romans 15:5-6
May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus, so that with one heart and mouth you may glorify the God and Father of our Lord Jesus Christ.

Yup…the Brittain’s comment on yesterday’s post beat us to the punch: 500 Days of posting since our sweet amazing miracle child was born. We had a few posts PE (pre-Ella), but the bulk of them have been with her.

I’d like to say more about this milestone, but Ella is asleep, Tina is heading to bed, and I’m heading that way myself. =)

Enjoy her cute little face…and thanks for being with us through this journey.

December 6, 2007

Philippians 4:8 (NIV)
…“Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things”.

December 6, 2008

Ella had another good day filled with smiles. Clinically she looks great, along with her heart rate and saturations at night. She is still retching quite a bit, which continues to be difficult to deal with, but we’re working through it.

You can see by the picture above how the Bun feels about having things placed in and around her mouth. Kelly is doing a good job of trying to get Ella over her oral aversion. It’s just going to take time.

Praising God for where Ella is today. It’s so nice to have her feeling well overall.

Tina is enjoying a small party at our neighbors house while Kelly and I hold down the fort. It was a busy week and I’m glad the weekend is finally here.

Oh…and I knew better than to show my face as Santa Claus to my little girl. She currently freaks out if I’m wearing a skull cap to cover my bald head. I’m sure the day will come when she gets to meet him…looking forward to that day.

Thanks for continuing to check in on us.

Psalm 40:16
But may all who seek you rejoice and be glad in you; may those who love your salvation always say, “The LORD be exalted!”

P.S. Please continue to pray for Olivia and the entire Bassett family.

Lord Jesus, bless the Bassett family and may your healing hand touch Olivia. Send them your comfort and peace Heavenly Father. Amen.

Below you can see the Bun working with her amazingly sweet and talented physical therapist. It’s encouraging to watch Ella progress in this area. Enjoy the pics.