On Monday, April 2nd, 2007, we went for our 20 week ultrasound and found out that we were having a baby girl. On Wednesday, April 4th, we found out that she has a high-risk birth defect called Congenital Diaphragmatic Hernia (CDH). God is using this time to stretch us and test our faith, but we are holding tight to His promises.
Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
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!
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.”
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.
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.
Ella had a tough time going to sleep last night. It was 10:30pm and she was hyper. Kicking her legs and making noise. Wow. It literally took 30 minutes of calming and rocking to convince her that sleep was a good idea.
Once she fell asleep, her numbers were still not as good as we would have liked. Sometimes it is hard to tell when she first goes to sleep, so I asked Josh to look when he woke up early this morning. Unfortunately, still a bit on the sketchy side. We thought we would ask Kelly to watch her clinically today.
Kelly reported that she tolerated the food as the day progressed and went into the later sessions. They tried a bit of apples with some sweet potatoes. Hopefully, her progression will continue to move in the right direction. I know that the Christmas break was not a great time of feeding progression. She has an OT appointment tomorrow, so hopefully the OT can continue to bring more perspective.
Overall, Ella had a pretty good day. Her and Kelly had fun using all the new toys that Santa brought her. Also, Ella was sporting a new outfit from Grandma Eusey with a new headband from Grandma West. Pretty sassy looking in her Elmo attire! And she did not mind spending time in her exer-saucer. The first time was for 45 mins to an hour. The second and third time was for another hour. Lots of time sitting up today! Good job Bun!
When Ella went to sleep tonight, it was the same type of “red flag”. She was on 1 liter of oxygen saturating 93-94 which is okay, but not where she normally would be on 1 liter. Heck, we’ve even been able to wean her to 750ccs when she is asleep and doing better.
That likely means that she probably has more fluid on board. It’s tough to know for sure, but that is what we are leaning towards. This means that we will probably have to call Dr. Abman tomorrow to see if he wants to give her more Bumex.
As we drift off to bed tonight, we’re just so thankful for Ella.
Well, the Bun still didn’t look good by this morning according to her numbers. So in-between meetings at work, I paged the pulmonologist. He wants to make sure that it is not something else that is causing the lower saturation, increased heart rate and moodiness. After talking, he agreed to give her one more dose of Bumex. Afterwards, she had a huge diaper and that was it. So, maybe we have dried her out now.
But when we put her to bed tonight, her numbers still didn’t look great. We’ll see once she is really fast asleep. If she gets worse over the coming days, the pulmonologist asked that we call back. He wants to make sure that it is not some other sort of illness that is causing these symptoms.
Yep, Ella was going at it in the exer-saucer again today. She also had physical therapy today as well. The notes from the therapist indicated that she is rolling from her belly to her back on a consistent basis. Ella still needs to gain upper body strength, so the PT asked that we continue to make Ella reach mid-line for toys and grab for things when we are holding her to build her shoulder/torso strength. Also, she requested that Kelly give her several sessions of tummy time throughout the day. Right now, Ella only tolerates 3-4 minutes at a time.
And of course, we are still working on oral foods. Looks like sweet potatoes to me!
We’re just thankful for where Ella is at today…we are not at the hospital. We have a wonderful doctor that we can call and try to manage her care from home. I can’t imagine if we had to take her to the doctor every time she showed symptoms. We would be having doctor visits 2-4 times per month. That would be a drag…and living at the hospital is a drag.
So although she is not doing as good today as other days, we praise Him for where He has her and continue to pray for her increased strength and health.
Ella did not sleep well last night. Maybe she wanted to wake up to celebrate the new year.
Her heart rate seemed to go lower last night, closer to her baseline. However, she is still not saturating real well and is requiring more oxygen. At this point, we’ve determined that it is probably not fluid. But we are not sure what it could be. I noticed this morning that her nose was extra stuffy but seemed to get better and minimize as the day continued. Also, she does seem to be retching a lot throughout the day.
I think that is the frustrating part. We can tell that she is not great, but cannot determine the culprit. Nothing is real clear, except that we know something is off.
It was a low key day hanging around the house. We tried feeding pears today. She tolerated a few bites and then decided that she was done with her oral workout. We’ll keep trying more.
We are having her sit up more throughout the day. Her endurance has gotten much greater over the past few months. Whether it is sitting in her chair, on our lap, or in her exer-saucer, it is good to have her out of the crib more often. You can tell that she is anxious to get moving one of these days. She wants to roam, but her physical limitations don’t allow her to get there. Maybe 2009 will have the first crawl or step.
We’re hopeful for a good year in 2009. Our heart’s desire is that Ella continues to grow strong and get healthier. We would love to stay away from the hospital this year. The goal is for her to gain weight and get stronger without acquiring any illnesses and that she can outgrow some of her current issues. Above all else, we’re just thankful for where He has us today. Last year on New Year’s Eve, we were still hanging out in the NICU in Florida!
What a difference a year can make. We are looking forward to reflecting next year at this time!
Happy New Year to you and yours from Josh, Tina and Ella Renae “The Bun” West!
I had the day off work so I was in charge of taking care of the Bun. Let’s be clear though: Ella is the one who is actually in charge. =)
Ella had a great day. She slept solid through the night and her numbers looked good this morning. She’s still on a liter of O2, and not quite saturating where she was before, but at least she’s going the right direction. Plus, she’s clinically behaving great.
The only time she gave me any grief today was when I went to feed her some apples. Man, she just does NOT want to do it. She started melting down, and it was a “my way or the highway” melt down. She wasn’t in pain at all, it was just total drama. So I bumped up her O2 and let her keep crying it out. After about 5 minutes, I gave her the binky and frog to calm her down. She did, but then I tried again a minute later. Another meltdown. I tried again for another 5 minutes with minimal success.
There were a few times there where I just had to turn my face away and laugh a bit, because she was so playing me. It was all about her getting her way. OH MAN…the fun times ahead we have to look forward to ;-).
I was able to get a couple cute videos of her today. We did have a good time together.
Praise to our Heavenly Father for his continual blessings, provisions, and our sweet Ella Renae!
