May
21
    
Posted (Tina) in All Posts on May-21-2008

ATTENTION SHANDS STAFF: Ella will be coming by the NICU for her last visit before heading home to Colorado. Join us this Thursday, May 22nd, anytime between 6:15pm – 8:15pm in the conference room. Hope to see you there!

Other than Ella getting up extra early this morning (you always know it is too early when it is still dark outside), we had a great day together. She was in such a great mood, especially during her bath.

She had 2 good PT sessions between yesterday and today. I recommended a different approach to mix things up and sure enough, Ella responded much more favorably. Thank goodness!

You know it is bad when you have to bribe your daughter for tummy time. She was content while watching Mickey Mouse Clubhouse on my Mac. I can tell that she is getting stronger each day.

Today, she was actually smiling at the PT which warmed my heart. It has taken a session every day for nearly 4 weeks and finally, she is not completely melting down. I know that process is going to have to start all over again in Denver. I just hope that the new PT I’ve scheduled is a good match for us.

Once again, I’m thankful for the experience we have had since we left the hospital. We have been exposed to excellent surgeons, physicians, occupational therapists, and physical therapists during our stay. Although parents can get a “gut feel”, it is nice to feel more knowledgeable about what to expect for Ella and to have gained more discernment in this arena. Since parenting is new and Ella’s care is so different than an average baby, this investment of time was a wise decision for us. This way, when we go home to Denver and are screening doctors and therapists, we have a comparison in our minds.

We lose our couch, rocking chair and end tables tomorrow. Although we have sold some other items on Craigslist, that will really make it final: we are going home. I’m hoping that camping out for the next few days isn’t too tough with little to no furniture. We lose our dining room table and desk on Saturday. Ella’s crib sold to a sweet lady that is preparing to be a grandma. She drove 45 minutes to view it and leave a deposit, and insisted on letting Ella sleep in it as long as possible even though this means an extra car ride. Isn’t that nice?

We’re excited to go and visit the NICU staff tomorrow evening. It should be fun to see some familiar faces that we have not seen in awhile. I think it will bring into perspective just how far Ella has come, even from leaving the NICU in late January.

Josh only has 2 more days of work and of being in Gainesville. He is a little excited to be starting the process of going home.

So far, it appears that the weather is going to cooperate during both trips. We are supposed to get lots of rain on Friday in Gainesville (2-3 inches), so we’re hoping it clears up by the evening & early morning of Saturday when the car packing and driving begin.

I can’t believe this chapter is ending…its been so long. One thing is for sure, Gainesville will always hold a special place in our hearts.



 
May
20
    
Posted (Josh) in All Posts on May-20-2008


I think the Bun was dreaming about her first rock concert in the picture above. She sure had the spiked hair for it.

Ella zonked out again early tonight, around 7pm. She slept all the way through the night last night, and we hope she does the same tonight.

Ella enjoyed her first taste of apple juice today. We got her some Martinelli’s (non sparkling) and made it up with equal parts of water. Tina gave it to her throughout the day, and she took almost 4oz total! Our girl also drank a whole bottle of formula during her 12pm feeding. It’s great that she’s getting those calories in her.

Ella was also visited by one of her fans today. Sara came by to wish us well before we head back to CO. On that note, only 3 days ’till Doug and I drive back to CO, and 10 days until Ella is really home.

Can’t believe it’s almost here. Hoping and praying that the weather behaves.

Thanks for the continued support and prayers!



 
May
19
    
Posted (Tina) in All Posts on May-19-2008

Wow, it is Day 300! I knew this day would come, but never thought that we would be in Gainesville. I’m so glad we are going home soon. It is around the corner.

“Aunt Marla” came to visit Ella today. She wanted to make sure to give kisses to Ella before we head home. It was nice to visit with her!

I think Ella has figured out how to manipulate her physical therapist. The last few sessions, she ends up crying really hard and giving up (to the point of turning blue/purple). Finally, she ends up laying there and practically going to sleep. She simply doesn’t want to work and it really seems like she is dead asleep!

Then, as soon as the PT leaves the apartment, Ella wakes up and remains bright-eyed. She has done this the past few times. I think I will suggest to the PT that we switch our strategy on Ella tomorrow to see if that makes a difference.

Ella did not really nap this afternoon. In turn, she decided to go to sleep at 6:00pm, about 2-3 hours earlier than normal. We tried to wake her up around 7:30pm and she would not wake up. You should have seen and heard all the things we were doing to try and wake her up. Here and there, we would get a smile and she would try to open her eyes, and they would roll back. She was exhausted! As I write this post, it is already close to midnight and I’m so afraid that she will get up way too early!

With that said, thanks for the support and prayers. Hugs and good night kisses from the Bun!



 
May
18
    
Posted (Tina) in All Posts on May-18-2008

Some after bath pictures from Sunday for your viewing pleasure. Yes, her towel says that she loves her daddy!

Once she was all clean and in her pajamas, she was just as happy!

Only 6 days until Josh leaves with Doug to make his first drive to Colorado and 13 days until we walk in our front door! Please continue to pray for good weather for both drives.

We thank Him for Ella Renae. She is such a joy.



 
May
17
    
Posted (Josh) in All Posts on May-17-2008

Yup, the Bun LOVES watching the Mickey Mouse Clubhouse. It is her absolute favorite. She gets soooo excited when Mickey says the magic words: Meeska, Mooska, Mickey Mouse! She kicks her feet and smiles so big. If you’re not familiar with the show, you can see Mickey saying the magic words in the video below:

Tina and I get a real kick out of Ooh and Aah, the Disney Monkeys, when they do their little shtick in between the shows. I think Ella is pretty ok with them too since it looks like she was calling them by name today =).

By they way, as I’m writing this, Tina has been sucked into the Coco-Nutty Bowling game on their site.

Below are some other pics of the bun. Yeah…I’ll tell ya…she’s so cute…it’s gross. 😉

“Whatever Dad…I’m ignoring you.”


 
May
16
    
Posted (Josh) in All Posts on May-16-2008

“HEY! What’s a happinin’?”

“Yeah…I can grab my foot”

“Even stretch it out over here”

“I’m cute”

“Oh yeah I’m cute”

“So..what should I do next?”

“Put my finger in my mouth?”

“OK”

“How’s that?”

“Dad! Focus!!!”

“Need me to show you how to work that thing?”

“I hasn’t been drinking ocifer”

“What? Was that a little over the line?”

“DOH”

“Just kidding”

“Yeah…still cute as ever”


 
May
15
    
Posted (Tina) in All Posts on May-15-2008

Ella had a good appointment with Dr. Kathy Sarantos. She is such a sweet person as well as an excellent doctor. We’re really going to miss her.

We’ve graduated to being able to expand Ella’s diet to include some other foods. We just have to introduce them slowly and make sure that the foods do not have a negative impact on her respiratory status. We’re looking forward to trying some different things as the days pass.

Ella did pretty well on the bottle. This morning, she took 30ccs at her morning feed within 2 minutes. After that, she was worn out. But it shows that when she has the endurance, she can do it. I think that it will take a long time, but growth and strength over the days and months will translate into a lot for Ella.

We are having lots of challenges with the durable medical equipment company. We contacted them at the beginning of April and they have still not provided the equipment needed for our move. Fortunately, the current company has given up permission to borrow some of the equipment and return it when we arrive in Colorado, but we still need to make sure that we have oxygen, for example. There are lots of details that I am not sharing here, but trust me, it has been a hassle and I’m just hopeful that it will all come together in the end.

The items on Craigslist are moving along at a good pace. We only have a few more large items to sell, which has worked out great. Josh will be leaving in 9 days to start the drive and we will be waling in our front door in 16 days!

On a final note, we have two prayer requests.

First, please say a prayer for Ella’s cousin, Richard. Just yesterday, he was playing outside in a tree when the branch broke. He fell 10 feet and landed face first on the concrete. Praise God that he simply has a concussion and a fractured bone above his eye. His head, neck and everything else checked out fine. Gotta love little boys!

On an even more serious note, Josh just found out today that his half-sister passed earlier this week when she was found in her apartment in NYC. Although they were not especially close, it was sudden and unexpected. Please pray for the family and friends that are affected by this loss.

Thanks so much for all the support and love from all of you.



 
May
14
    
Posted (Tina) in All Posts on May-14-2008

Nurse Michelle came by for a visit this morning. It was nice to see her and it will be one of the last times before going back to Colorado.

Also, we received confirmation today that Nurse Janet will be visiting Colorado this summer. We are so excited! It will be nice to see a familiar Gainesville face after being home for a bit.

Ella had a good OT session today. The therapist suggested a different strategy with the bottle, using more negative traction, to help Ella’s suction technique yield more formula. It should help her get more formula with each swallow.

The feeding has been tough on Ella since her recent congestion that worsened. She has been taking 20-55ccs each bottle, depending on the time of day, her mood and congestion status. Many native Floridians tell me that it is likely allergies. I’m sure hoping that it decreases when we go home to Colorado. It just makes it tougher to breathe and that makes bottle feeding even more challenging for her.

We have our last appointment with Dr. Kathy Sarantos tomorrow. We are really going to miss her too. She has been an excellent pediatrician and a voice of reason for a new mom like me. And of course, I always felt that she could relate because she also has a daughter with a diaphragmatic hernia.

Only 10 days till Josh leaves and 17 days until we walk in the front door of our Colorado home.

Some of you may recognize the picture of Ella shown above from September 30, 2007.

I’m not sure if some of you noticed that another mom posted about her preemie son that has chylothorax. She searched the internet and found our story. In a nutshell, she has transferred her son to Dr. Kays at Shands. So even though he does not have CDH, she was looking for someone that wanted to help save her son.

I think that is one of the best things about Dr. Kays. He gives parents hope. Even though he is not ultimately in control of the outcome, I do believe that God uses His talents every day to save children. I sympathize with this mom and am glad that she has found Dr. Kays, so she too can give her son the best chance at life.

This reminded me of a set of scriptures that resonated with me, in the midst of our journey:

Romans 4:18-24
Even when there was no reason for hope, Abraham kept hoping—believing that he would become the father of many nations. For God had said to him, “That’s how many descendants you will have!” And Abraham’s faith did not weaken, even though, at about 100 years of age, he figured his body was as good as dead—and so was Sarah’s womb.

Abraham never wavered in believing God’s promise. In fact, his faith grew stronger, and in this he brought glory to God. He was fully convinced that God is able to do whatever he promises.

We’re so thankful for Ella Renae and for the hope and peace that He continues to give us on this journey.



 
May
13
    
Posted (Tina) in All Posts on May-13-2008

Today was a long day.

We left the house around 12:15 to head over to radiology for a chest xray. They had the strangest device that they use to sit up infants for xrays, with their hands stretched above them. As soon as I looked at it, I could tell it would not work for Ella. I explained that was not a good idea for the Bun. She told me that she would have to go ask permission to not use it. When she came back, she conceded to Ella laying on her back. I’m glad I could be nice about it and not have to argue and tell her that we would refuse to use the device.

Once we left there, we arrived at Dr. Kays office on time. I’m not sure if something came up in his schedule and he was catching up or what happened. In a nutshell, we waited 1 hour for a room and another hour to see him. We did not get home until 4pm (our appointment was at 1:15pm).

It was a good last visit with Dr. Kays. We were able to get all of our questions answered. Ella weighed in at 13 lbs, 11 ounces. Three weeks ago, she weighed in at 12 lbs, 13 ounces. So, not quite a pound on the weight gain but definitely the right direction. I was happy with the progress.

Dr. Kays increased her fluid intake to 625ccs and we are adding a touch more corn oil to her nightly feed. This should help her to gain weight in the coming weeks. We found out that he wants her to have about 100ccs per kilo per day to gain weight until she is around 22 lbs. Then, the rate will adjust slightly downward (not as much per kilo). We wanted a reference point from him, since this is a specific goal for CDH babies. Also, we have adjusted the corn oil to accommodate the increase in her food (.5ml for every ounce; now we are using 4.5ccs each night).

He pulled up the chest xray that she had just taken. Dr. Kays hasn’t taken care of her daily these days, so you could tell he did not have a good reference point for her. But when Josh and I both looked at it, it was the best one that we have ever seen. Her left lung was not as big as the right but was definitely more expanded. They both were larger and more clear than we have ever seen for Ella. When Dr. Kays listened to her via the stethoscope, he commented that she has great airflow. That made us happy too!

Dr. Kays was realistic when he explained that there is a good chance that Ella might have to have surgery in the next few years. Between her low muscle holding the diaphragm patch, her nissen surgery and overall growth, it is likely that things may need to be adjusted and re-repaired as she grows. This was not exactly what we wanted to hear, but I guess we just need to be thankful that we have the Bun. God will prepare us and help us deal with those chapters of our journey too!

We agreed to come back within a year, as long as Ella has been weaned off oxygen. We sure hope that is the case. Only time will tell. If Dr. Kays had to predict, he thought Ella might be on oxygen for 9-12 more months. I can’t even imagine the freedom we will feel without being tethered to oxygen. That will be a glorious day and another huge milestone for Ella.

It is going to be so strange to not be near Dr. Kays and I just hope that Ella is not in need of any surgery anytime soon. I would so much prefer to plan for surgery someday in the future.

Once we got home, it was nearly time for another PT session. We have been having them 5x per week. I think that Ella is getting stronger each day. We still have a LONG road ahead of us in this arena, but it is good to see her making progress.

I can’t believe that Ella is 42 weeks old…only 10 more weeks and she will be 1 year old! Wow…

One thing is for sure…she was cute today in her Daisy Duke outfit.



 
May
12
    
Posted (Tina) in All Posts on May-12-2008

Ella is such a cutie patootie.

She was really trying to talk today. When she is in a good mood and gets excited, she decides that she wants to try and communicate. Honestly, it is more of a grunt than baby babble. Either way, it is something!

We have our last appointment with Dr. Kays tomorrow. First, she will get a chest xray. We’re hoping that her lungs look clear and larger (more developed) than her last xray in early February when she was in the hospital. Also, we get to see if Ella has gained any weight.

Once we leave tomorrow, it could likely be a year or so until we get to see Dr. Kays again. That will be a strange feeling because he has always been close since she was born. Our prayer is that the follow-up care providers in Colorado will keep Dr. Kays informed and consult with him throughout the year as needed.

Were trying to figure out a time that we can visit the NICU and see some of the other nurses and respiratory therapists that helped take care of Ella. We’re hoping that comes together before we leave.

The days are counting down to our journey to Colorado. Josh will be leaving in 12 days and we will be home in 19 days.

Literally, it seems like every other day there is severe weather and tornadoes along the path of our drive (the south and central part of the country). Please pray for a safe drive – – first for Josh and Doug and second for Josh, Ella and me. We have lots of driving to do and need protection.

We’re so blessed to have a cutie patootie.