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 had a great day with Kelly. It was a full day with occupational therapy and physical therapy. And in-between, the weather was still nice outside so her and Kelly took a stroll.
Occupational therapy went well. While having Ella sit up in her chair, the focus was still centered about the basics like getting Ella to tolerate different textures around her mouth. For example, she does not like a warm, wet washcloth applied to her cheek (she pulled away and began to cry). She is protective on her face and especially her mouth area. The OT recommended doing this exercise heavily during bath time.
Today, Kelly tried giving cran-rasp juice on the binky (2:1 ratio). She seemed to tolerate. Then, they gave the cran-rasp in a bottle and she took about 3 gulps. It was something different than apple juice, so I’m happy she seemed to tolerate it. The plan is to alternate between binky and bottle with apple juice and cran-rasp juice to up flavors and textures. Also, to continue time in her chair and tilt up to 90 degrees slowly until tolerated.
On the physical therapy front, she recommended that we begin to change Ella’s point of view or position when she is playing on her mat. Also, to experiment with different positions to get Ella’s visual input horizontal. It is exciting to hear about the new recommended exercises. It just means that Ella is moving forward.
We thought Ella might be getting too wet, so we have given 2x day doses of Aldactazide (diuretic) for the past few days. I’m convinced that it is helping and I see trends that she is moving in the right direction. When I laid her down for sleep, her beats per minute were around 150 which is normal. And we will be watching to see if she dips back down to 105-120 when she is sound asleep.
One thing is for sure: she is cute. She has not lost any of that noise!
Thank you for the support and prayers. It means so much to know that there are others that are lifting our family up in prayer.
Psalm 119: 10-12 I seek you with all my heart;
do not let me stray from your commands.
I have hidden your word in my heart
that I might not sin against you.
Ella had a lot of mood swings today. One minute she would just be happy and talky, and the next she would really fuss. I’ve not seen this behavior before, and maybe it’s just her testing her limits.
We do think she is a bit more “wet” these days mostly based on her increased secretions and heart rate. We’re continuing the twice a day dose of the aldactizide diuretic until we see signs to convince us otherwise.
Tina is working late tonight. She’s had a lot going on at work. I have too with a project deadline yesterday that I pushed to get done. We’re both totally exhausted.
Kelly is pretty wiped too considering she’s had a migraine for the last couple days plus taking care of the Bun.
Because Tina is so slammed, I’ll be taking Ella to her pediatric appointment tomorrow afternoon. I’m hoping her weight has not significantly increased because it would probably be fluid.
Please pray that we can all get some much needed rest tonight and the Ella would ease into a more dry state.
Ella weighed in with the weekly in-home nurse at 8.01 kilos versus the 7.92 that she was last week. I want her to gain weight but would be concerned if I noted a spike in weight gain.
Josh took Ella Bun to the pediatrician today. They had a good time playing in the car. It was the first time Dr. Perry had seen Ella since before her recent addition to the hospital.
Dr. Perry thought she looked great and wants to see he again in another 6 weeks.
Yep, it happened. Some of you might have been looking for this post…and it wasn’t there last night or very early this morning. For the first time ever, the photo and video were ready for all to share. And I simply went to bed and forgot!
In any case, Ella had an uneventful weekend which is good for her. She doesn’t seem 100%. It’s so hard to determine now if Ella is too wet or too dry. We just know that she is not in her prime zone. She has had lots of secretions which has prompted more retching. And you can get her to smile, but at the same time, you can tell she doesn’t feel her best.
We need to get labs done by tomorrow, so we can see where she is at from a wet/dry standpoint. I’m not sure it will really answer any questions or tell us what to do different. She did seem like she was too wet, so we increased the diuretic. Then, it almost seemed like she got too dry so we backed down on it again. Likely, it probably means that we have not come up with the correct cocktail for her diuretic. Poor Ella, it seems to be an up and down roller coaster for her too! And when she is on either side, she doesn’t feel great. We’ll take being too dry over too wet, but right in the middle would be great!
We tried increasing her food rate 1cc/hour on Saturday. I mean, 1 cc per hour should not have much impact. Yet, I’m not sure if Ella knew we changed the rate on the food pump. She seemed like she was not comfortable and retching a lot more. Again, maybe that was bad timing with other things going on. We will likely try again soon.
On a positive note, she was in a good mood last night. It’s nice to know that a simple game of “boo” can still make her happy. Now, it is cute because she is starting to laugh!
We’re excited to start another week to see what God has planned in our lives. Sometimes it’s so easy to look at the waves in life and get distracted by them…instead of looking at the person who created the waves and drawing close. That is our desire as we start a new week: to praise Him for all He has blessed us with and to know that He orchestrates every challenge in our lives for a specific purpose.
Enjoy watching Ella with her laughs…it’s sure to brighten any day!
The rate on her food pump was increased to 32ccs per hour and there were no problems. It is so good to know that we are at her volume goal for food. Now, we just need to figure out the right amount of diuretic. Eventually we may add corn oil to her nightly feeds again, just to give her some more calories.
Tomorrow, Josh and Kelly will be taking the Bun to get labs toward the end of the day. We’re going to try and go to a facility that is closer to our home. I’m hoping everything goes smooth and that we find a “good stick”. It is so hard to take Ella for something that she dislikes so much and to have multiple sticks or more drama than necessary, just makes it that much harder. Please pray that labs will go smoothly for all involved.
When I got home tonight, Ella was in a great mood. I had a good time hanging out and tickling her. It was making her kick, squirm and laugh. I miss being with her each day, but I have already enjoyed the break during the day (work) and coming home to see her. Ella is making me feel recharged, which did not used to be the case. I love it.
Praying each day for strength from above…strength to trust and believe that He has a plan for our lives. He has orchestrated every detail. Ella is such a fantastic reminder of this truth.
Psalm 62:8 (NIV) Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.
It was a mellow day for Ella and Kelly. Normally, Tuesdays are packed with OT and PT. But, our physical therapist canceled the appointment today due to personal reasons (and will be back tomorrow morning). However, our occupational therapist emailed last night to let us know that she was dropping us as clients. The commute time is too long and not working for her. This is the same OT that was assigned to us back in Lone Tree. This house is 20 minutes in a different direction, so we weren’t sure if she was going to keep us or not. It sounds like after the past few weeks, she has decided to cancel. So, once again we are back to the drawing board looking for an OT that can help us get Ella to where she needs to be with feeding. My hope is that the process does not take too long (seems like it can take a long time to get reassigned).
Labs were this afternoon. Fortunately, we were able to find a location much closer to our house at a Children’s Hospital satellite office. Josh left work early to come home and take Ella for her labs. Of course, we forgot to move the car seat and stroller from my car, so he had to come visit me at work in the afternoon to retrieve it!
Ella did really well with her labs and it sounds like we got a “good stick”, so thank you for all your prayers! It was quick and although Ella let us know that she did not like it, she got over it really quick. Josh made sure to comment and let me know how impressed he was with Ella and her tolerating it. You figure after everything she has been through, getting labs are pretty minor! And I think she is dealing better with them because they are not every day like they used to be at the hospital, week after week. We probably will not know the lab results until Thursday. Josh is thinking that she must not be too dry because there were no issues drawing blood (sometimes it can be a bit tough if she is actually too dry).
On a totally different note, I listened to a great devotional this morning. Charles Stanley spoke about taking risks. When we think of risk, what do we mean? Most of the time it is the possibility of suffering loss or suffering danger and/or the possibility of having an ill outcome. The truth is: in order to understand risk, it is closely related to faith. Later it was asked, do you have one of those God inspired goals that feels too big, too complicated or seems beyond your abilities? When God tells us to do something, He will always provide the resources to get to the goal. So when we are relying on God, are we really taking a risk?
I could relate to the question about God-inspired goals that felt too big, too complicated and beyond my abilities. I thought about the risk of deciding to have Ella, as we obeyed God. We had no idea of the outcome and went all the way to Florida for her birth. That was a lot of risk and her life continues to be a testing of faith. And yet, look what God has done through her life – she has blessed all of us!
It made me think of my job that I just accepted and all the challenges that seem beyond my abilities. It seems overwhelming to balance everything. And yet, I feel like the Lord called me to this specific job at this specific company. So, I had to take a risk and I have to trust Him – trust that He will provide the resources, abilities, wisdom, and knowledge to help me accomplish what He wants.
It sure is nice to have a Savior who can provide that peace. I just can’t imagine living without Him.
Above, she was doing okay. This was around 10am this morning during physical therapy. But as the day continued, Kelly described her as being fussy. You could just tell that she wasn’t feeling well. Even when she was sleeping as seen at the bottom of the post, her face was showing distress.
We did get the results of her labs this morning. Her BUN was 17 which is too low. This means that we are going to increase her diuretic. Likely, we will increase it to 2x per day for the next 2 days to bring her back in the right direction. After that, we still need to decide if we want to try to give diuretic 2x per day, every other day or every third day. We’re also consulting with her pulmonologist to see which he wants to do and if we should get another set of labs in 2 weeks.
Thank God that tomorrow is Friday. It has been a crazy week at work for me and lots of late nights. I’m wiped out.
We hope and pray that Ella will feel better soon. It’s so hard to ride on this roller coaster. One day she is great and then 2 days later, she can be in a bad place. It’s so hard to know what to do for her.
Father, we life up Ella Renae to you in Jesus name. Lord, we ask that you would help her little body to operate in manner in which it should so that Ella can feel better. We praise you and thank you for our beautiful baby girl, the gift that she is to all of us. We ask for wisdom and discernment as her parents. Help us to know the right amount of medication to give Ella, so she can feel her best with minimal side effects. We thank you for Kelly and the blessing she has been to the West family. We ask that you would help each one of us to continually seek your face each day, so we can walk in obedience and follow your plan for our lives. Thank you for the many blessings that you bestow upon us. We’re forever grateful and we know that we don’t deserve it. Thank you again for the gift of faith and how you love us so much that you press us forward and push us into situations that might not be comfortable so our faith can continue to strengthen. Amen.
Isaiah 1:18-19 “Come now, let us reason together,”
says the LORD.
“Though your sins are like scarlet,
they shall be as white as snow;
though they are red as crimson,
they shall be like wool.
If you are willing and obedient,
you will eat the best from the land”
