Last night, Ella did not sleep well. She coughed a lot during the night and woke up several times. Her “numbers” did not look that great either. It was just a confirmation that she was likely accumulating fluid.

The nurse did not visit our home yesterday due to the holidays, so we did not have weight as a factor in determining if this was going on. But a higher heart rate and requiring more oxygen is pretty straight-forward.

So around 12 noon, we gave Ella a dose of Bumex (it has been 2 weeks and 1 day since her last dose). Within the next few hours, she had 2 large diapers. This just shows that she really did need the diuretic. For the rest of the day, she seemed in a good mood. We tried doing “exercises” with her, but she seemed like she knew that it was Saturday and didn’t seem up for it. It was like she was telling us that she wanted a break. So it became a lazy and relaxed day for the West household.

It was sunny outside and looked nice, but the temperature gave a clear reminder: 23 degrees. I long for the summer days when it is warmer and we can take Ella outside again. Heck, I long to be able to take Ella out in public places and not be so concerned about her health.

But we praise God for where Ella is right now. Looking back over the blog this morning provided a reality check. Ella has endured so much and has made so much progress over the past year. It blows my mind when I think of what a true miracle we have been given. And although the days can be tough, it is so worth it.

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

Today was low key. It was nice to have another day of work to just relax. One of my favorite things is to tickle Ella. She gets a kick out of it too and Josh caught it on film.

The photo of Ella on yesterday’s post tells you the type of Christmas that she had…a fun one! She sat in her exer-saucer for over an hour! It was amazing. Santa, grandparents and friends gave Ella lots of goodies including new videos, books, and an animated Elmo. Grandma West even made custom frog covers for her! You will start to see them in the photos since Ella is holding one pretty much all the time!

Maggie and Manny were running around the house playing with each other and then sleeping on the couch together. Josh and Grandpa were laboring away in the kitchen all day, but all their efforts were well worth it – we had the best Christmas dinner.

Ella is doing well with her z-vibe toy and getting better at tolerating her inhaled steroid. The oral feeding is tough…she barely tolerates it depending on her mood in that moment. I’ve had the best success with feeding small amounts of apples from my fingers versus the spoon.

As Ella went to sleep tonight, her heart rate was especially high from her Captopril (one of her heart medicines). This is a typical response from her (her heart rate is high anytime within 45 minutes of administering the medicine). But tonight, she also needed 1.5 liters of oxygen to settle down. We’re hoping that was just a fluke but are on the watch. It has been 2 weeks since we administered Bumex and we’ve also increased her food intake by ~50ccs per day. Since the last several weeks have shown that she needs Bumex here and there, we’re trying to observe her clinical behavior closely to see if we can catch it early. We have a feeling that tomorrow might be the day that she needs a dose.

Tonight, our heart is heavy for the Bassett family. Olivia had a rough night and thankfully, Dr. Kays was around to step in. But, Dr. Kays is now on vacation for the next 10 days. Please lift up this family in prayer: they are experiencing the roller coaster of CDH and Olivia is having a tough battle just like Ella did. We know the Lord is right there during every moment, but pray for peace that surpasses all human understanding in the midst of the valley.

Psalm 23 (NLT)
The Lord is my shepherd;
I have all that I need.
He lets me rest in green meadows;
he leads me beside peaceful streams.
He renews my strength.
He guides me along right paths,
bringing honor to his name.
Even when I walk
through the darkest valley,
I will not be afraid,
for you are close beside me.
Your rod and your staff
protect and comfort me.
You prepare a feast for me
in the presence of my enemies.
You honor me by anointing my head with oil.
My cup overflows with blessings.
Surely your goodness and unfailing love will pursue me
all the days of my life,
and I will live in the house of the Lord
forever.

Ella had a good day with occupational therapy. She is still taking food, albeit a bit slower, from our fingers and tolerating the spoon. This past week (since OT session last week), Ella worked her way through 6 jars of baby food. Not too shabby.

The OT asked us to keep everything up (including the z-vibe on her cheeks and mouth area) and to try introducing orange veggies, like sweet potatoes. We’ll try it and see how the Bun responds.

Also, we will be trying to increase the density of her food tomorrow from 24 k/cal to 26 k/cal. Since I have the day off from work and will be hanging out with her all day, I figured it was a good day to try it. Thankfully, she has progressed to bolus feeds without issue. It has taken us 3+ months since surgery for her to work back up to bolus feeds.

One of Ella’s CDH buddies recently graduated from using her g-tube for the past 2 years. I cannot even fathom the day when that will be the case. Her friend is now device free.

Kelly said that Ella had a great day overall. When I left for work this morning, Ella was happily playing on her mat while Kelly was signing, talking and playing with Ella. She seemed to be having a good time.

Manny and Maggie did a little bit better tolerating each other today. That made Grandpa happy! I’m excited to see them and hang out for Christmas in a couple of days.

Grandma West arrived here safely today. Thank goodness there were not any weather-related delays. No snow in So Cal and none in Denver today, so it went smoothly.

When Grandma arrived, they went upstairs to play with Ella in her room…and Daddy could not resist tickling the Bun.

Looking forward to celebrating our Savior’s birth on Thursday with family, food and gifts. We have just so much to be thankful for this time of year.

Luke 1:39-45 (NLT)
A few days later Mary hurried to the hill country of Judea, to the town where Zechariah lived. She entered the house and greeted Elizabeth. At the sound of Mary’s greeting, Elizabeth’s child leaped within her, and Elizabeth was filled with the Holy Spirit.

Elizabeth gave a glad cry and exclaimed to Mary, “God has blessed you above all women, and your child is blessed. Why am I so honored, that the mother of my Lord should visit me? When I heard your greeting, the baby in my womb jumped for joy. You are blessed because you believed that the Lord would do what he said.”

Apparently, the highlight of the day was Ella rolling from her belly to her back! That is a first and an exciting step of progress. She can’t roll from her back to her belly quite yet, but it is exciting that she did a version of rolling over. When she did it, Kelly clapped and made a big fuss which made her laugh.

Yes, on the way home from work I tried to get some Christmas shopping done. I am guilty of not having any gifts ready….except for my Dad’s puppy! Speaking of the puppy, my Dad decided to name her Maggie.

Maggie and Manny will be coming over for Christmas which should be fun. I’m still holding out hope that Manny will not take too much longer to snap back into his old-self. He is lethargic and anti-social. Right now, he’s not to into the puppy either; he snarls at her when she comes close and wants to play. I know this is a normal response when a puppy is introduced, but I think he is also still trying to figure out what happened to Joslin. I really think he misses her.

I can’t believe that Christmas is just a few days away. Grandma West is scheduled to arrive tomorrow, but we will see if the weather cooperates. Hopefully, she will not have any major issues. We’re excited to see her and spend the holiday together.

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.

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.

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.

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.

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.

Ella went to get labs today and see her pulmonologist.

Her labs all turned out fine – her BUN was 19. This is an “ok” range, but a bit on the wet side for Ella, just from a numbers stand point. Clinically, she has still been behaving great, so numbers do not mean everything. However, just 2.5 weeks ago, her BUN was 31. So, she has trended in the wrong direction for the past 2.5 weeks. This likely means that if she stays on the same course, she will get too wet again. In talking with the pulmonologist, it also means that she may need doses of Bumex every so often to keep her stable.

Ella has not gained weight over the past 2 months, so she needs to have an increase in calories. We are almost positive that she will go towards getting too wet and requiring Bumex because she also is going to get an increase in food volume. We want to try and keep her at 100ccs per kilo per day. That means that we need to increase her from 768ccs to 812ccs in a 24 hour period (34ccs/hour x 24 hours). An incremental increase of 48 ccs each day should not be that much, but for Ella even the smallest changes can wreak havoc.

We are still working diligently to work towards full bolus feeds. So far, she has been taking bolus feeds once every 2 hours or so during the day and using a continuous feed via the food pump at night while she is sleeping. Our goal is 5 bolus feeds during the day, once every 3 hours and then the food pump at night. We are pretty close.

Once we can arrive there along with our new volume of food (hopefully over the next 3-5 days), we were told to mix her formula to a stronger density of 26k/cal. She is currently at 24k/cal. We are not sure if she will tolerate it, but we need to try because she is not getting enough calories each day to gain weight.

The pulmonologist asked me if Ella coughs. I noted that she does cough throughout the day. It sounds like a dry cough, versus a wet or junky cough. Based on that info, he decided to add Flovent which is an inhaled steroid with minimal side effects. He thinks that this might help with her cough. He had us use this for about a week before we were admitted to the hospital in late August. Then, because of her hospitalization, the script for it went away. Well, he introduced it back into her regiment today.

Also, her sildenafil (Viagra) script was increased from 3.0ml (7.5mg), 3 times per day to 3.2ml (8mg), 3 times per day. So, just a slight increase but one that is effective for her weight today.

We go back to the pulmonology clinic in about 6 weeks on January 22, 2009. I’m hoping that we can meet our goals for food with the increase of volume and density, so Ella can gain weight.

Breath of Heaven (Mary’s Song) by Amy Grant was playing on the radio this morning. For some reason, the lyrics really hit me. I can not imagine being Mary and being chosen to carry the Savior.

I have traveled
Many moonless night
Cold and Weary
With a babe inside
And I wonder
What I’ve done
Holy Father
You have come
Chosen me now
To carry your son

I am waiting
in a silent prayer
I am frightened
by the load I bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now

[chorus]
———————————–
Breath of Heaven
Hold me together
Be forever near me
Breath of Heaven

Breath of Heaven
Lighten my darkness
Pour over me, your holiness
For your holy Breath of Heaven
———————————–

Do you wonder
As you watch my face
If a wiser one, should of had my place
But I offer-all I am
For the mercy-of your plan
Help me be strong
Help me be
Help me

[chorus]
———————————–
Breath of Heaven
Hold me together
Be forever near me
Breath of Heaven

Breath of Heaven
Lighten my darkness
Pour over me, your holiness
For your holy Breath of Heaven
———————————–