Posted (Tina) in All Posts on March-17-2008

Ella slept well last night and woke up ready to celebrate St. Patrick’s Day.

All of us recognize the traditional icon of the day as the shamrock. I read today, “…And this stems from a more bona fide Irish tale that tells how Patrick used the three-leafed shamrock to explain the Trinity. He used it in his sermons to represent how the Father, the Son, and the Holy Spirit could all exist as separate elements of the same entity. His followers adopted the custom of wearing a shamrock on his feast day.” I had no idea of the meaning behind the shamrock, but it certainly gives me more motivation to wear green and celebrate the day.

The first feed of the day did not go well – – she had a major meltdown requiring extra oxygen. The second and third feed of the day went much better. We tried the bottle again with the most being 20ccs at a time. Again, not a large amount but at least it was done with a normal amount of crying and fussing.

Also, we tried rice cereal twice today. She did SO much better this time. Even though she did not enjoy it and fussed each time, that is a normal baby response to me. But getting so worked up that she turns purple/blue and requires extra oxygen is a bit over the top. So, thankfully she did not have an episode over rice cereal today.

The weather was beautiful today so I pushed Ella for a walk. I enjoyed the fresh air and sunshine immensely. I think she enjoyed the change of scenery too. Eventually though, she became sweaty and bored. It lasted for about 20-25 minutes, which is the longest walk for Ella so far. Hopefully, we can increase that over the remaining days in Florida.

She had lots of fun with her bath today, but I think she likes cuddle time afterwards the best.

We never heard back from Dr. Kays on which oil to add to her nightly feeds. Kind of a bummer considering that we were really counting on that ingredient to help her gain weight. She has been taking her full 550ccs, so we are hopeful that we will still see some weight gain on her next weigh-in.

Also, we did not hear back about her blood work. We are going to make the assumption that no news is good news.

She has maintained on 400ccs of oxygen since last Thursday without an issue. That is very exciting. We still have a long way to go, but the fact that we made some progress feels good. It simply means that she is growing and getting stronger.

The more we care for Ella, the more we realize that she simply does not adapt to change well. It can be something fairly minor and she notices it. Until she has been exposed enough and realizes that it is not a negative experience, she is skeptical and can get upset very easily. So the moral of the story: introduce new things very slow and be patient. If she melts down, wait and try again another time. And keep at it.

Thank you for the continued prayer coverage. Trying to stand away and be objective, this past year has been rough for us on many levels. We have a beautiful daughter to be thankful for, and as such He has placed an enormous responsibility on our hands and trusted us to take care of her. We need the prayer support for her and her health. Along with that, we need lots of prayer to remain obedient and lean on Him for daily strength.

Psalm 105:4
Look to the LORD and his strength;
seek his face always.

John & Estela Williams on March 17th, 2008 at 7:27 pm #

Happy St. Patrick’s day to you too, sounds like you two had a blessed one enjoying the nice weather in Florida… it was a bit chilly her in Colorado. Love you guys! God Bless

Kristen on March 17th, 2008 at 7:38 pm #

Certainly. . . we are honored to pray for your family. You have encouraged our hearts probably more than we have encouraged yours! Blessings, Kristen

Joel Snyder on March 17th, 2008 at 9:28 pm #

Ella, Happy St.Patrick’s Day. You look terrific and I am glad that you enjoyed your walk with Mom. I am praying for you to keep up the change in your food. Have a wonderful night and I will check on you later. Love,Grandpa!!!!!!!!!!!!!!

Jim and Char Jordan on March 17th, 2008 at 9:48 pm #

You have to remember “Patience is not passive, it’s concentrated strength” It may help to be very unconcerned when she has a melt down. The more she can see that you will not withhold oxygen and that things do happen the more she can tolerate. Then again this may be just her personality. We just don’t know. She sure can smile and play to the camera. She is such a cutie and ham. We love you and miss you. Jim and Char

Matt, Abby, Austin & Caed on March 18th, 2008 at 7:37 am #

We continue to pray for you and to lift you up to God. He knows how much you two love Ella, He knows your needs, He knows you get frustrated sometimes and tired most times. But He has a plan for her and for both of you. We’re here for you.

At that time Jesus said, “I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children. Yes, Father, for this was your good pleasure.
“All things have been committed to me by my Father. No one knows the Son except the Father, and no one knows the Father except the Son and those to whom the Son chooses to reveal him.
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
Matthew 11: 25-30

Marge (Indiana friend of Keith & Liz Mueller - Chris' parents) on March 18th, 2008 at 8:36 am #

…And I see HIS face whenever I see Ella’s beautiful face. I don’t know if you ever listen to Country Music, but there is a song by George Strait that is about babies; the song is ‘I Saw God Today.’ Whenever I hear this song, I immediately think of Ella and the miracle that God has sent to the world through her. She is so precious and continues to have my prayers for her journey.

Laura Marold on March 18th, 2008 at 12:41 pm #

Happy St. Patrick’s Day!! Glad to see our baby girl looking so cuddly. Love, Laura M.

Jeff Jacobson on March 18th, 2008 at 1:35 pm #

Wonderful photos! Such a beautiful smile 🙂 Wishing you all well and continued success.

The Lizotte Family on March 18th, 2008 at 6:52 pm #

OMGosh she looks GREAT! It’s so sweet to see her on the monitor looking so good.
Roni took breast milk only until she was about 6 or 7 months old. Then doc said to add more items to her diet. We tried this and that, she hated the rice and the oatmeal. But loved pureed chicken and ham and lamb and beef YUK they smelled the worst. But she would throw a fit in excitement when she saw these. It’s hard to say baby will like this 100% Sylvia loved that rice and fruits stuff, but Roni hated both of those items. Eventually Roni figured out that what I ate was consumable by her too. And that was the end of jarred food for her, unless you were willing to put up with her screaming at you to give her your food and she was only 8-9 months then. Check at your next doctor visit if you can offer her something else. We were allowed to do 1 new item each week. For a short while anyways.
Big hugs and lots of prayers

Janiss Robles (Philippines) on March 18th, 2008 at 11:16 pm #

Clover leaf!!! Very nice slide show effect you got there. Although, we don’t celebrate St. Patrick’s day here in the Phils, I still wish you had a great one. Seeing Ella’s images every single day is so amazing. I can tell she’s gaining weight. Praise to You Lord Jesus Christ. Love and prayers, Janiss and family

LoriAnn Kuhn on March 19th, 2008 at 11:11 am #

I think it’s great that you add new pictures on a daily basis; it’s like a second blessing to getting to read on Ella’s daily challenges and successes. I have not read enough to figure out how you got from Colorado to Washington to Florida! Unless I have my states wrong, that girl has done more travelling than I have in the last 10 years! Thanks again for sharing your story and journey. God Bless. The Kuhn Family

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