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."
And now we are here, one year later…and we have a Bun! It feels like forever ago and yet, just like yesterday.
We went to our house that is on the market for rent. There was a lot of yard work to be completed. When we were driving to the house, it was 100 degrees outside….very hot for Denver! Josh sucked it up and got to work while I played inside with Ella.
Praising God every day for how far we’ve come, and for blessing us with this incredibly sweet girl. Only 5 more days ’till her 1st birthday….wow.
No, Ella has not started playing with light sockets! But, by looking at the picture above, you might be skeptical. Her hair is out of control these days!
Ella did some of her exercises, but was not too tolerant of “working” today. Maybe she knows that it is the weekend and expects a break too. Instead, she spent lots of time watching baby signing & Baby Einstein videos. She was smiling and kicking a lot which was fun to watch.
We had a great day hanging out with friends.
Josh and Stefanie Sides came over to visit with us and see the Bun. We had not seen them for over a year, since before we left for Ella’s birth to Florida.
It is so great to have the comfort of long time friends, where you can simply pick up from where you left off as if not a single day had passed. We have known them for almost 11 years; we met when we moved to Colorado back in 1997. We had a great lunch and then of course, the boys had to play the Wii.
Tomorrow, a nutritionist will be visiting our home at 10am. She will be reviewing Ella’s current feeding schedule and making recommendations for food intake as needed. We know that Dr. Perry plans on increasing Ella’s food intake after our appointment next week, simply based on weight gain. But, it will be interesting to see if this nutritionist recommends anything different than the nutritionist at the Children’s Hospital that saw Ella in early June.
We’re knocking on doors and praying fervently for direction in the coming days. Along with thinking about possible job scenarios for me, a bigger component is the daily care of Ella. We’re trusting that if it is meant to be, the perfect person will cross our path. We’re not in a rush, but just excited to see what His plans are for this next chapter.
Psalm 119:34-36
Give me understanding, and I will keep your law
and obey it with all my heart.
Direct me in the path of your commands,
for there I find delight.
Turn my heart toward your statutes
and not toward selfish gain.
Ella was visited by a nutritionist today. Her name was Carrie and she was a really sweet person. She spent a lot of time consulting and gathering all the information on Ella’s condition and history.
A report will be put together by the end of the week with her recommendations. I am planning to take this with me to my appointment with Dr. Perry next Monday. I know he wants to increase Ella’s food volume to ensure enough caloric intake. It will be interesting to see what Carrie recommends and how Dr Perry decides to incorporate those recommendations.
Carrie had an infant scale with her, so we weighed and measured Ella. She weighed 15 lbs, 8 oz and was 27.25″ long. Every scale is so different, so I don’t hold onto that with any seriousness. I’ll be more interested to see how she weighs in on the scale at Dr. Perry’s office, especially if we can use the same one.
We have a PT appointment tomorrow. I’m hoping that Ella is in a better place and that she will have a good session since our last appointment didn’t really take place.
As you have witnessed before, the Bun sure likes playing with Dad when he arrives home from work.
I am reminded each day what a blessing it is to have this little girl. She has such a sweet spirit and I still cannot believe that we made it to this point. Only 3 more days until she has her first birthday!
Ella was having a good time today rolling around on the carpet. She does not have the skill to roll over by herself, but you can tell that she wants to do it. So I was guiding her and helping her get to certain positions.
Also, she is getting more skilled at taking the binky in/out of her mouth on her own. While I was photographing her, she even offered the binky to me!
Her PT appointment went fair today. The therapist and I spent more time discussing strategy. I tried to stress that I think the way that we are doing exercises is too much for Ella. You have to be tricky with her. The key is going so slow and breaking down simple physical tasks to the point that Ella does not realize that she is working.
For example, we want to teach her to roll over. When she is on her side, her arms and legs need to be in certain positions to roll over. Right now, the positions are not a natural thing for Ella. So I suggested that I could try working with her each day to ensure that her arms and legs are in the right position even when she is just on her side, distracted by her toys. With repetition, Ella will start to lay in that position more naturally. If she does that on her own and her body is in position to roll, she may even try it more herself. The therapist was very receptive and mentioned that she might even give Ella’s prior PT a call to discuss strategy too. She admitted that she does not have a lot of experience with medically fragile children, so the amount that you can “push” the kid to do is a lot different. Also, she wants to be respectful and learn Ella’s limits.
I really like the PT and want to continue working with her. Ella likes her too! I think we just got spoiled being in Gainesville and having a PT with so many years of experience. But at least Ella’s prior PT is open for discussion via phone on ideas and input to help Ella move forward. I think that will be a great resource for the new PT, especially in these early days.
Another CDH baby that we only know via their blog was readmitted back into the hospital last night. She is only 4 months old and reherniated – – her prosthetic diaphragm patch gave way and the contents of her bowel moved back into her chest causing a bowel obstruction. Praise God that the surgery went well today for her and that she is recovering.
This is always something that we worry about in the far recesses of our minds. As this other CDH mom shared on her blog, “We’re so used to seeing her smiling and playing and to see her looking sick and helpless again is heartbreaking.” This is my worst nightmare – – to have Ella get sick or reherniate. Every day when she retches, I’m always saying a silent prayer for no reherniation (she retches HARD) and also no micro-aspirating into her lungs.
We feel so blessed that she has been home from the hospital for nearly 6 months now and has been able to remain healthy. That is our continued prayer for our little miracle who will be turning 1 year old this Thursday. Our birthday wish is for continued health this upcoming year, so that she can grow and remain strong.
Looking at the little face below, I can’t imagine life without her. And just to think: a year ago today, I had just arrived in Gainesville and Josh and I went to see Ratatouille in the movie theater while Ella kicked around in my belly!
I can’t believe that a year ago today, I ate Olive Garden for dinner with Josh in Gainesville, FL. Also, I started to feel things moving around and thought I was experiencing Braxton Hicks for the first time. For those of you that were not following along back then, the title of the post was so correct: Braxton Hicks got it wrong!
I talked with my brother and sister-in-law late and got off the phone around 11:30 pm EST. They were excited that I was getting signs of an upcoming birth. I just seemed to think that it was at least 2-3 weeks out at that point. Boy, I was wrong!
By the time we went to sleep at midnight, I was feeling contractions (even though I did not realize it). Finally at 4am, I woke Josh out of a deep sleep to let him know I was in pain! Lots of pain for 4 hours straight! And isn’t God’s timing amazing? Dr. Kays was just getting back from an extended vacation; it was his first shift back.
Ella Renae West was born into the world only a few hours later after they attempted to slow down the birth! And our long journey started…
It’s just hard to believe that we are sitting here at home 1 year later with a beautiful little miracle.
We praise God for taking us on the road less traveled. Each day, He surprises us with how He uses our story to bless others as well as ourselves. Sometimes we wonder why He chose us and then we have to stop and remind ourselves that although it doesn’t always makes sense, He knows best. We feel honored and privileged that He has entrusted Ella into our care. May we always strive to please Him in all we say and do.
What a year it’s been. I am in absolute awe of what God has done and what He continues to do through this sweet amazing girl. We have witnessed so many miracles along the way and so many lives impacted by Ella’s testimony.
Yes, today is Ella’s official birthday, but we’re planning to celebrate it this Sunday. My mom is coming into town tomorrow, and Tina’s dad will be around to enjoy it with us.
Ella has come a long way, but she has a very long road ahead. There are many foundational milestones that she still needs to achieve, and quite honestly, some days it is very difficult to look at how far she needs to go to catch up.
We spotted a rainbow outside of our window today. Just another gentle reminder to continue to trust in Him, rest in Him, and rely on Him.
Thank you Jesus for Ella Renae!
Heavenly Father, thank you for bringing us to this place. This place of celebrating Ella’s life…which was absolutely no accident. You knew about her before the beginning of time. You ordained everything she has experienced, and we trust in your perfect will for her life. Lord, continue to make her strong. Guide her life so that she would be glorifying to you. You are an awesome God, worthy of our praise. Thank you Lord…Amen.
So a couple of you mentioned that the 365 day count was incorrect on Ella’s birthday (the 24th) due to the leap year. Initially I thought it was off because we started our count with day one on her birthday instead of zero…but that would have put us back another day, not ahead one.
I did some digging, and sure enough we had double entries for day 346. Probably due to some crazy late night posting that day =). Fortunately the mix up wasn’t too many posts ago, so I went back through and updated the other day counts.
Now, hopefully, you freaky OCD calendar people can sleep at night. 😉
Ella’s grandma made it in safely and Tina suggested that we go have a one on one dinner while she watched the Bun. It was nice to see my mom and catch up with her in person.
Grandma and I will be on Ella duty tomorrow while Tina escapes for awhile. We should have a good time hanging out together.
Grandma West went a bit crazy today and bought party favors, so that we can celebrate in style tomorrow. It should be fun. Hopefully, Ella will be in a good mood.
The highlight of the day was having visitors from the south. Yes, Barb & Pat Dirrim visited us today. They live in Atlanta, but were visiting family in Denver this weekend. They have been following Ella’s progress since she was born. Although we had never met in person before, they emailed and asked if they could come and meet Ella. Well, of course!
It sure is fun to meet people face-to-face that have been following our journey. We had a nice visit and they showered us with birthday gifts for the Bun. One gift was an outfit that I think Ella might need to wear tomorrow. Barb took a simple pant and t-shirt combination, but embroidered the shirt with “the bun is one”. Too cute!
We simply added their gifts to our ever-growing pile of cards and gifts for the birthday celebration tomorrow (thank you everyone for your love for Ella on her first birthday!). Before the Dirrims left, we ended in prayer which was awesome. It is so nice to have an instant connection with people based on your shared faith in Christ.
We’re looking forward to tomorrow and seeing what the Bun does when she is crowned princess and has a lick of cake and ice cream! Although this celebration has to be small and simple, it can be Ella’s first introduction to many future parties that will occur once she gets older and healthier: Ellabrations!
Ella is getting her beauty sleep right now, so that she is ready to party!
For those of you who missed out on the live broadcast at 2:20 pm, here’s the recording of Ella’s celebration. The action really starts 6 minutes into the video, so you can drag the slider to that point, unless you want to hear me and Tina’s dad talking on the phone. =)
UPDATE 2:20 PM (MST)
Heya Ella Fans…we’re going to try a last minute live broadcast of the Bun’s Birthday Celebration. You can view the video below by typing in the password: ella
The video will be muted initially but we’ll turn it up once we start singing Happy Birthday =).
You can also join the live chat below the video as well.
(uStream Chat)
02:28 ustreamer-22706 : Happy Birthday Ella!!! Love Matthew and Melinda
02:30 ustreamer-92442 : Hi Baby Ella. Happy Birthday.
02:32 ustreamer-92442 : Love watching this beautiful video.
02:35 ustreamer-32845 : hello this is angie from nc,happy birthday ella
02:43 ustreamer-33415 : Hi, watching from Frostproof, FL.
02:44 ustreamer-33415 : Linda Casey from Frostproof, FL.
02:46 ustreamer-32845 : hi ella,tina,josh,grandma,and grandpa,we love you ella
03:01 Jooosh : Thanks all
03:18 ustreamer-6774 : happy birthday ella from north carolina you are amazing
Here’s some photos from Ella’s celebration yesterday. We’ve also included a little video of her while Tina reads one of her favorite books plus a couple pictures from today.
P.S. This post marks our 500th entry in Ella’s blog. Wow…that’s a lotta posts =).
