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
———————————–

Ella had a great day – she was so happy and full of smiles.

It seems like we have figured out the mystery to her diuretics…for this volume of food (768ccs total each day). If I think about it, she still has her challenges with retching and waking up at night, but she has been a lot more stable since her last downturn. Once we gave her the extra doses of Bumex and dried her out, she has been in a better place (since about Thanksgiving). It’s been a nice, long stretch for the Bun.

We are getting labs done this Thursday before we see the pulmonologist. I’m hoping that things won’t need to change too much since she seems to be in such a good place. But yet, I know that she needs more food/calories. As soon as we change the volume of fluid she intakes, it can throw off her proper dosage of diuretics and she may get “too wet” which causes her respiratory distress.

The bigger challenge: she has not really put on weight since she left the hospital. Yet, it will be 2 months on Saturday. Something tells me that her food volume and meds will need to be adjusted so she can gain more weight. And this typically means some rough days ahead for Ella. I’m making a note to enjoy the honeymoon while it lasts over the next couple of days.

Josh went to a Avalanche hockey game tonight with Ella’s Grandpa. Looks like they had a good time.

It is so great to have Christmas time. The holiday season always brings certain cheer and memories to mind. I can’t wait for Ella to get old enough to enjoy it and make her own memories too.

It was not fun to drive in this morning on the way to work because we accumulated about 6-8 inches of snow overnight. But as I drove amidst the cars, the sun shined brightly. The snow glistened back and more snow continued to fall. It was beautiful.

Romans 15:13 (NLT)
I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.

There was no therapy appointments today; Ella and Kelly just hung out together.

Kelly was actually not feeling great, so it was low-key and she did not push Ella too much. Probably the biggest change in the last 3 days is Ella’s feeding regiment. We started on Saturday, tested it more on Sunday and today was another full day of moving towards bolus feeds. This simply means that we can use a syringe to place a large amount of food all at once into Ella through her g-tube.

Since she had her most recent surgery on Sept 3rd, we have not been able to bolus feed. She has been attached to a food pump and food bag on a continuous drip. Yes, it makes it tough to be mobile with her, even just to put her in a chair or have her lay on her belly and do physical therapy.

Being stuck to a food pump as well as oxygen is very inconvenient. At this point, I had just accepted the fact and gotten completely used to it. But, I can tell you that the taste of freedom without the food pump is nice and I have already started to like the idea of only being connected to oxygen. It may not sound like a big deal, but it gives us a lot more freedom.

Ella looked really good as she sat in her chair earlier today to watch a video. It’s amazing that videos can cause such a great distraction. She forgets that she is working out!

We are in the process of trying to see if we can get Ella approved for more occupational therapy via our health insurance policy. The new OT recognizes that Ella is way behind and would like to try and come more often. This is a blessing because Ella really does need the help to catch up. Remember that when babies are born, eating, swallowing, sucking is all instinctual. But as the 2 month mark passes, it becomes a learned skill rather than an instinctual skill. We have to teach Ella how to eat. And that is tough considering her history and oral aversion. Please pray that we will get the additional therapy hours approved. We would love the opportunity to give her more help in this area.

I love it when Ella gets sleepy. Sometimes, she can get cranky. Other times, she can come up with some great facial expressions. She is such a little cupcake!

John 15:5-8 (NLT)
“Yes, I am the vine; you are the branches. Those who remain in me, and I in them, will produce much fruit. For apart from me you can do nothing…When you produce much fruit, you are my true disciples. This brings great glory to my Father.”

Such a great reminder as we travel through each day: remain in Him. It can be tough to remember to do this continually throughout each day. But when I am on the lookout for Him: I see Him and I hear Him. When I am not paying attention, life can pass by.

We can’t bear much fruit if we are not focused on Him. My reminder for today is to remain in Him.

I can’t believe the weekend is over. I just needed one more day. Don’t we all feel that way? With the holiday season upon us, I did not get the decorating around the house completed like I wanted to…bummer! And the weekdays are just so busy!

This week, Ella has an appointment with her pulmonologist on Thursday. We have to get labs again and see where she is at fluid wise. Her weight last week on Friday was 8.12, down from 8.14 two weeks prior. It makes you realize that she definitely had fluid on board. For this past week, she has been behaving great and seems like she is nice and dry. We will see what the labs show. But, she is not gaining weight like she should, so know we have to come up with a new strategy for the next steps.

Ideally, she would take 100ccs per kilo, per day of formula. Currently, she is at approximately 94ccs per kilo per day (100ccs – 120ccs per kilo, per day is what is recommended for weight gain). It would seem like an easy decision to simply give her 1cc extra per hour for 24 hours (24ccs extra per day) to help bring her to the right amount. However, it could throw off her fluid balance. After talking to the pulmonolgist on Thursday, we might go this route. Either way, we want to ask if her meds need to be adjusted. The amounts are based off her weight when she left the hospital and she has gained weight since mid-October.

We just found out that Grandma West is going to come out and visit us over Christmas. She found a good deal on a direct flight and decided to come and join us. It has been a long time since we spent Christmas with her, so it will be nice. Plus, no one from our family has ever flown out for Christmas in Colorado. It will be good for her to have some time around Ella.

Tonight, I was invited to a dinner with my friend to celebrate our upcoming birthdays. We share the same birthday and she will be out of town on our celebratory day. So it was really nice for Josh to watch Ella so that I could go out to dinner with my friend and have some girl time.

As we start another week, I am reminded of God’s faithfulness.

Isaiah 25:1 (NIV)
O LORD, you are my God;
I will exalt you and praise your name,
for in perfect faithfulness you have
done marvelous things,
things planned long ago.

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.

It snowed all day today. In the early morning, it took Josh 2 hours to get to work. And on the drive home, it was frosty. Do you see my dashboard? I could not believe that my car was registering the temperature at -8 degrees. Fortunately, this type of freeze is not typical.

Ella slept pretty well last night. She only woke up 2 times, which is good for her. Then, she had a great day hanging out with Kelly.

Clinically, she looks great. At night, we are turning down her oxygen to 750ccs. During the day when she took a nap, Kelly caught her saturations at 100 and her heart rate at 103! That is low for Ella. It means that her fluid balance is good; she is likely dry.

Even though it was late when I got home, Ella continued to smile and be in a great mood for me. I just hope that this streak of doing well can continue.

We’re so blessed to have this little Bun in our lives.

Ella slept better last night. On Monday night, I was up about 10 times. Last night, it was only 3 times.
I’m hoping she sleeps well tonight.

Kelly reported that the Bun was in a good mood today. Although there were no PT or OT sessions, they still did their exercise together throughout the day. Ella seemed to be smiling a lot and having a good time.

So, some of you might have wondered about the project that Josh was working on. Well, Josh normally does all the backend programming to make slide shows work for his company, Photobucket.com. We use slide shows all the time to show off Ella on the blog.

Well, this slideshow not only took programming time from Josh but it also involved him dressing up in a costume and filming footage in our basement. Yep, Josh is Santa in the slide show below which is now being used by millions of people! Pretty cool…

Wow, some of the insurance statements came today in the mail. Just for 7-8 weeks in the hospital in Denver, it was nearly $400k. Can you imagine life without insurance? I’m just in shock over how much money was spent while Ella lied in bed every day and they tried to adjust medicines.

As often as I can, I try to go and read other blogs of CDH babies and their parents. It is so heart breaking to see the trials of those who survive the defect and those who we will meet in heaven. Every time I read of another baby with their challenges to fight for life, it brings a flood of memories back from last year in the NICU with Ella. The daily challenge and roller coaster of having a CDH baby. It is such a challenge to see your baby so sick and yet there is really nothing you can do. My mind is baffled when I look at Ella and think about all she has endured in her short little life.

I received a pamphlet in the mail and it described the developmental milestones. I’d be lying if it wasn’t a bit discouraging. Every Mom wants the best for their child. Ella does most of the items on the birth – 3 months scale, and very few on the rest of the scale to her 16 months of age.

Yet, it is amazing that she is even alive. She is our little miracle. We are so blessed to have her in our lives. Although we may not understand His purposes or His ways, He ordains all of it. Every detail. Ella is made perfect in Him. She is made just the way He wants her to be. We need to trust Him: trust His plan for her life, for our lives.

Tonight, I lift up the parents of those with CDH babies. I pray that God will protect the hearts of the parents and families. Some babies are living and battling with CDH every day while other babies have been taken into His hands. I pray that we will learn to trust and surrender to His plan for our lives and for the lives of our children. Teach us to trust you more. Heal our hearts from any pain and sorrow that we’ve endured. Help us to have peace with whatever our circumstances might be. We trust that you are in control and thank you for the babies that you have placed in our lives.

Psalm 62:8 (NLT)
O my people, trust in him at all times.
Pour out your heart to him,
for God is our refuge.

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.