Posted (Tina) in All Posts on April-13-2009

Ella had a mellow day. We did not push her too much since she is working through this cold. You can tell that she doesn’t feel good and yet, she will still manage to smile with just the right stimuli (i.e. Mom making silly faces at her!).

I’m hoping that her symptoms will subside soon. We did not have physical or occupational therapies today which was probably a good thing. I’m not sure that she would have tolerated any pushing for “working out” today. It seems that the cold is the most minor kind you could have and yet, it has such a dramatic impact on Ella including the increased need for oxygen since she is not able to breathe through her nose. We’re hoping that it can remain in the minor stage and that it will pass. When you have a medically fragile child, it is always unnerving to think that something minor can turn into something major that requires hospitalization…it is not that uncommon. For now, we are hopeful that it will pass soon.

Her last shot of synagis to prevent RSV (Respiratory Syncytial Virus) is this upcoming Friday. Then, we won’t need more of these shots monthly until October. And on the vaccination front, she is not due for any until her 2nd birthday. So Ella will actually get a break from needles for a short stint. That is a nice change of pace for the Bun!

I tried to focus today on many things, but just keep finding myself thinking about the baby. It is hard to escape the reality of what is going on and to not think about it. I was scouring the Internet yesterday, just searching and searching. One of the first resources that I came across was String of Pearls. It is a local perinatal hospice. They help families after they receive a fatal diagnosis of their unborn baby and make the decision to carry their baby to term. I was touched by the story of Pearl and her short life. Sure enough, God used an Ella-follower to contact us via the blog and tell us about this site today. Although I had already seen the site yesterday, it was almost His way of prompting me. It just confirmed that I did not find the website on accident and I really should get support during this time. I wanted to contact String of Pearls, but I’m actually kind of shy and was not sure when I would get the courage! Well, this Ella-follower works with the director of String of Pearls, since that hospice program is run at the hospital where she works. So, she mentioned our story to the director today and just encouraged me to contact her.

Before I had a chance to finish this post, the director at String of Pearls emailed me directly. Once again, God making it very clear that I need to go enlist the support that is being spoon-fed to me. She has offered to meet me in person and offer any help that she can during this time. If you go to the String of Pearls site, you can see that she has walked this journey before too. How amazing that a family would take their experience and not only share their story, but create a perinatal hospice program to help other families. It simply made this verse come to mind:

2 Corinthians 1:3-4 (NIV)
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

I’m thankful that there are resources close to home. We were called to Florida for Ella’s care and could not have been in a better place under the care of Dr. Kays and the NICU nurses to save Ella’s life. But I have to admit, I’m glad that there is a local resource for the journey related to our second child.

Psalm 61 (NIV)
Hear my cry, O God;
listen to my prayer.
From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.
For you have been my refuge,
a strong tower against the foe.
I long to dwell in your tent forever
and take refuge in the shelter of your wings.