Posted (Tina) in All Posts on March-6-2008

UPDATE 3/7/08 5:00pm EST – We’re back in our apartment and all is good. We’ll give a full update on the new post tonight.

UPDATE 3/7/08 11:00am EST – We’re not in Kansas Toto, but you’d think we were. Just wanted to let you all know that we’ve taken shelter at Shands (the hospital) to wait out the storm. Just figured we’d be safer here than on the second floor of an apartment. Some of you called to ask if we’re ok. We’re totally fine, just figured we’d play it safe here. Latest radar is here.

Ella had a rough night, even scratched her forehead pretty good grabbing at her cannulas, but finally decided to sleep solid from 5:30am – 6:30am and then until 7:30am. So, those last 2 hours of beauty sleep carried us both through the day.

She had a good day complete with a bath and time playing with Grandma West. One thing that was new today was a belated Christmas gift from Grandma West – – a portable DVD player with Baby Einstein videos. It is great because it plays DVDs as well as CDs and can be strapped to her daytime crib or be placed in the car. Today, we just tried it in her crib and she really enjoyed it. I’m excited to try it in the car. We always have such a tough time getting her settled, so maybe it will provide a nice distraction.

The OT came to see Ella today and gave me a few tips to try and work on to strengthen her feeding. Most had to do with position, like placing a finger under her jaw, to stimulate better sucking. Today, she took around 60ccs via the bottle at various times.

We still have episodes each day (where Ella gets so upset and turns a blue/purple color). The one tonight lasted for a total of an hour. Looking back on this one and others, it almost seems like it is not a sole factor that is causing them. It is like a perfect storm of events, pain, tiredness, etc. and she just can’t handle it anymore. Either way, they are still so tough to endure emotionally. I look forward to the day when she can verbalize what is hurting her. Right now, it is an ongoing mystery.

Tomorrow is my last day of work. I’m glad it is so that I can refocus my attention back to Ella and close that chapter of my life. It has been tough to have an allegiance to both at the same time. There are people that I am really going to miss from work, but hopefully I will be able to maintain relationships with those away from the work environment.

When Ella fell asleep in my arms tonight after her episode, I just stared at her face. I could feel her chest moving up and down, a bit labored for breath. It is such a miracle that she is here with us and that we get to enjoy her.

I still don’t have a sense what the Lord has planned for her life. But He must have something amazing in mind. I reflect back on everything that she has been through in her short time, and all odds were against her. And yet, she is here with us. We’re so thankful.

Psalm 52:9
I will praise you forever for what you have done;
in your name I will hope, for your name is good.

laura blackwell on March 6th, 2008 at 9:26 pm #

I haven’t had a moment to take in the Ella “details” and pictures for a while. Enjoyed getting caught up tonight. She is so sweet. I love those smiley pictures. You’re in my thoughts and prayers.

Williamsburg on March 6th, 2008 at 9:30 pm #

We want you both to hear again what an incredible blessing it is to have you posting daily so that we can keep up with the journey. It’s amazingly difficult to hear about the hard stuff – the sleeplessness and ‘episodes’ and various struggles – but I bet I can speak for so many of us who catch up with you daily that we would SO much rather know and be able to weep as well as rejoice along with you than remain in the dark. We absolutely agree with you about God’s plans for Ella – we see His incredible touch on her parents’ lives and marvel in awe. Thank you, Lord, for the grandmas to come and help out and take care of the big people as well as the little one. Love you so much. XOXOXO

Charlotte on March 7th, 2008 at 6:47 am #

Amen to this —–

— we would SO much rather know and be able to weep as well as rejoice along with you

Eve Johnson on March 7th, 2008 at 8:49 am #

Ella, Josh, Tina & Grandma,
It was a blessing to meet you all at Shands this morning. Ella is a beautiful girl, and such a testament to the goodness of God and the power of prayer. I will pray for her often. Love in Christ, Eve

ALVIN ! on March 7th, 2008 at 9:14 am #

God is faithful! Hold your faith tightly and HE will abide with you! We live about 9 miles west of Shands just off Archer Road in Haile Plantation. If you need anything while here, feel free to call on us!

Joan and Steve Odell on March 7th, 2008 at 12:24 pm #

Glad you are safe – the Oklahoma storms can be as rugged so I know what that’s like. You guys may not always know or find out what it is that gets her going. Even when a baby is born without issues and progresses to toddler stage they have their moments and we can’t identify the source of the problem. I think some times we forget they are a little individual and react as such. You guys are doing such an awesome job and the three of you are so precious. I’m glad your last day is today, Tina – having various things pulling at you and Josh make it difficult at times. Take care and our prayers continue – Hugs and Love – Steve and Joan

Joel Snyder on March 7th, 2008 at 2:04 pm #

Ella, I am sorry to see that you scratched yourself but it will get better. Your Dad called to let me know that you are safe and waiting for the bad weather to pass bye. I bet you are happy to have your Mom all to yourself. Iwill check on you later tonight. Love,Grandpa!!!!!!!

The Lizotte Family on March 7th, 2008 at 6:21 pm #

She is so beautiful. You are blessed with many things I can tell. Glad to hear you are back at home. She is so attentive… WOW

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