Dec
21
    
Posted (Josh) in All Posts on December-21-2008

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.



 
Dec
20
    
Posted (Josh) in All Posts on December-20-2008

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.



 
Dec
19
    
Posted (Josh) in All Posts on December-19-2008

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



 
Dec
18
    
Posted (Tina) in All Posts on December-18-2008

Ella had another amazing day while the snow fell outside. Kelly reported that she ate a jar and a half of baby food! And this is just after a few days of concentrated effort. Yesterday, Ella would not take the spoon when eating. Today, she tolerated the spoon too!

Along with the feeding of food, Kelly has to spend lots of time doing exercises that the OT gave her to help Ella with her oral aversion. One tool that was kind of pricey, but the OT swore by it, is a tool called a Z-Vibe. The Z-Vibe is a vibrating tool for oral-motor stimulation and sensory input, designed by a speech-language pathologist. The gentle vibrations stimulate the gums, palate, and tongue. It can also be used outside the mouth on the cheeks and lips. We purchased one and Kelly has been using it over the past few days. Again, the whole purpose of the Z-Vibe which has different tips and can vibrate is to help kids overcome oral aversion. I’d say that Ella is getting a decent start.

Wow, I can’t believe it. It is so good to hear about this progress. Eating a jar of baby food each day is more along the lines of what Ella was doing back in Gainesville when she was only 9-10 months old. It just makes me happy.

Speaking of happy, Ella was so smiley this evening. She was vocalizing a lot, kicking and laughing. I just loved it. I was doing my infamous trick of trying to kiss her over and over really fast on her face and neck…she was giggling. Such music to my ears.

I cannot believe that Christmas is next week. Wow. And I have pretty much only purchased one gift so far…a puppy. The little canine is going to be rescued tomorrow evening. I’m really excited to go pick her up and love on her.

I’m going to keep her for a couple of days before handing her over to Grandpa. This way, I can get a sense of how she is doing and what she responds to. Plus, I want to get some puppy love myself!

Ella has PT tomorrow. I’m hoping that she responds better than she did on Tuesday. If I didn’t mention before, the PT sessions have been a bit off schedule while the therapist works through the red tape of being reimbursed from our insurance policy. Because she was not getting paid and the sessions were piling up, she has only been coming once per week (been this way since Thanksgiving; we still get guaranteed one session per week as it is not billed through insurance but through a federal and state funded program). She didn’t come all last week at all, so this week we have 2 sessions. I just hope that the process can be expedited. Ella was on such a good track to do well and now, the progress has been slowed considerably.

I’m looking forward to Friday and the weekend…and hoping that Ella has another amazing day of progress with Kelly.



 
Dec
17
    
Posted (Tina) in All Posts on December-17-2008

Ella had a great time with Kelly today.

The highlight of the day was apples. The OT advised to have feeding sessions each day (back in Florida, apples were her favorite). So, Kelly got out the jar and started working away. Ella was tolerating the spoon, but Kelly picked up on her lack of enthusiasm, so she switched to using fingers. Ella doesn’t quite have the coordination to use her hands with food, but Kelly placed her fingers in Ella’s mouth…and it worked! Ella responded well, so much that the small jar of apples is nearly gone this evening.

It is so exciting to hear about Ella having a positive experience with food again. I’m sure it won’t be long before she is taking the apples like she used to months ago.

Also, the head trick to prevent retching does seem to be working. That is really cool considering that Ella retches several times each day. It is handy to have a non-invasive trick that seems to be helping. It is rare when something so basic and straight-forward actually works with Ella because she loves to break the rules and be different!

Josh’s company had a Christmas party this evening. It was fun to go downtown and meet many of his co-workers as well as see some of the familiar faces from years past. But before I showed up at the Christmas party, I found it necessary to go and view a puppy.

Yes, I know that I am crazy. It is so quick. We miss Joslin terribly and Manny has spent more time looking for her. But I found a little female, black and tan dachshund that is just too adorable to pass up. So, my Dad is getting a new puppy for Christmas. We will likely be picking her up over the coming days and I will be excited to share her with all of you.

I think I surprised my Dad a little bit with the news. But he also knows that he gave me full permission to go get another dog, sooner versus later. He also made sure to tell me that it must be a little girl. I hope that this new family member will help to distract from the loss of Joslin and that Dad and Manny can have another friend to keep them company. I know that she did a lot for me just when I met her this evening. She was playful and loving…I’m excited.

As I end tonight, I am refreshed and am looking forward to Christmas next week. I’m not ready for the holiday but it is always such a magical time of year. And I’m just so thankful that Ella Renae is in our lives to share it with us.



 
Dec
16
    
Posted (Tina) in All Posts on December-16-2008


Last night, Ella had a great night of sleep. She only woke up twice which is really good for her.

She had OT and PT today. The OT had a great suggestion for Ella’s retching. She recently read a study that showed that if you grasp and place pressure on the head of the child for a few times in the moment when they would normally retch, it can subside the retching (showed favorable results for 70% of patients in the study). Even though there is a huge margin of error, we are willing to try anything.

So this evening, Josh and I were both trying this new method anytime you could sense that Ella would normally retch. And amazingly, it did seem like it helped her. We’re trying to not be too optimistic, but the initial signs looks good. Anything to reduce the retching is great; it has to be one of the toughest daily things to encounter.

We purchased this Z-Vibe tool that is supposed to help with oral aversion and the signs have been promising after only two sessions. Along with that, the OT has instructed for us to have 3 feeding sessions per day. We’ve opted to use apples since those used to be her favorite. We’re hoping that we can make progress sooner versus later.

Yes, the dog is still on my mind. I found myself waking up throughout the night consumed with sadness. But today was a new day and although I still miss her, I know that it will get easier as the days pass.

Thanks for all the thoughts and prayers. It means a lot to know that there are so many out there supporting us on this journey.

Lamentations 3:25 (NLT)
The Lord is good to those who depend on him,
to those who search for him.



 
Dec
15
    
Posted (Tina) in All Posts on December-15-2008

Ella had an “ok” day. Kelly relayed that she seemed more fussy than usual. On a feeding note, that seems to be going well. The increase in food while working toward full bolus feeds has continued strong.

I did not have a great birthday. This morning, our sweet little miniature dachshund passed away unexpectedly. Her 10 year old heart just decided to stop working. And although we don’t spend each day with her anymore, I’m very sad.

Joslin (aka Taco) has spent the last 1.5 – 2 years with my Dad mostly. I was traveling back and forth to LA every week for work (while pregnant) and then we left Colorado to go to Florida for Ella’s birth and hospital stay. During that entire time, Joslin and Manny have kept my Dad company.

Now, my heart is sad for my Dad. He misses Taco a lot already. And Manny, he howls if you separated him from Joslin. Now when my Dad goes to work, Manny is by himself. I’m sure he doesn’t understand where his sister has gone. They are used to snuggling at night together while they protect the house.

I don’t have a picture, but hanging off the fireplace are two stockings: one for Taco and one for Manny. My Mom made the stockings several years back. And Christmas was always one of Taco’s favorite times – she loved ripping open gifts. I was really looking forward to it.

I’m thankful that Taco and Manny came over for Thanksgiving and I spent some good time with her. But my heart is still sad.

Last year, I was in the NICU with Ella and this year, my dog passes away. Prayers for the grief to subside and for better birthdays in future years ahead.



 
Dec
14
    
Posted (Josh) in All Posts on December-14-2008

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.



 
Dec
13
    
Posted (Tina) in All Posts on December-13-2008


We had so much fun with Ella is her exer-saucer today. Somehow, she was at just the right angle in the seat. It wasn’t too uncomfortable and she spent a good amount of time in it.

This was in-between decorating the house with some Christmas cheer. It sure is fun to have Christmas music and decorations around the house.

Clinically, Ella did well today. And tonight as she is sleeping, her numbers look good. She is saturating well on 750ccs of oxygen and her heart rate is 115. That is a good place for Ella. When these numbers start to get worse while she is asleep, we know that she might be getting too wet. For now, it appears that the Bumex did the trick. We think that she just might need doses of Bumex every 2-3 weeks to keep her in a good place. Not the most ideal, but better than taking it every day!

We’ve increased Ella’s food to 34ccs per hour, for a total of 812 ccs of food total per day. She seems to be tolerating it well; this is good since we need her to gain weight. We are also having success with bolus feeds. We are bolus feeding every 2-3 hours while she is awake and using the food pump at night when she is asleep. So far, so good. Our plan is to stick with this for this upcoming week. If she continues to do well, we will have to take a look at increasing the density of the food.

Tomorrow, Josh is going to try and tackle the basement. It needs help – it is so messy since we moved. I will take care of the Bun and watch the snow fall. Already tonight as I type this post, the snow storm has hit. It is coming down heavy outside. It sure looks like Christmas here in Colorado!

Sleep tight Miss Ella…don’t let the bed bugs bite.



 
Dec
12
    
Posted (Josh) in All Posts on December-12-2008

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.