Apr
15
    
Posted (Tina) in All Posts on April-15-2009

Ella did not retire until 11pm last night, but then she slept well. That was great since she is still battling the sniffles.

We missed our PT session yesterday. Unfortunately, Ella’s PT messed up her foot badly and had to cancel the session. But, she came today so that Ella could get in her physical exercise. Even though Ella is still recovering from her cold, she found the energy to enjoy the physical exercises with her PT. She missed her yesterday – they are buddies!

However, she did not have the tolerance today for feeding. Kelly and the OT were able to get a few bites in, but she decided pretty quickly that she was not up for feeding exercises. So they tried focusing on other things and using finger puppets for distraction. I was upstairs on the phone and once she decided that she had enough, I could hear her melting down several times in a row. Her lung capacity has definitely grown. She cries hard and very loud. It is so tough to hear your baby crying so hard…you know this is good for her and we have to continue feeding exercises for her overall good, but it feels like you are torturing her sometimes.

The OT is even trying to help us come up with tactics for bath time. I haven’t really mentioned it, but Ella used to like baths, and ever since her last hospitalization, she does not. We’ve tried singing, toys, trying to make it fun. But, nothing has worked. So, I try to limit it to 5 minutes and go very fast. She just melts down, cries, gets worked up with lots of secretions, starts retching and requires more oxygen. She cries from the time you remove her clothes and carry her to the bath until she is dry and dressed again. It is so hard to endure. Again, it just makes me feel like I am selectively torturing my princess. Sigh…I’m sure this will get better someday, but it is a tough thing to endure in the evenings.

Onto our other child, I was very touched when a mom commented on our blog the other day. For some reason, I recognized the name, yet I couldn’t remember how. Then, I remembered. I had just found her blog the other day via the String of Pearls site. Her family just went through a similar situation and delivered a baby boy in January 2008 with a fatal prognosis. How did this mom know about our family? Via an email exchange, I found out it was through a devoted Ella-follower who has been with us from the beginning. The world is so small and I am amazed to see how God is already orchestrating the details.

It has still been just shy of a week and I find that I am still numb and in shock. I have barely digested the news from last week. My best friend has assured me that she has cried and grieved enough this past week for both of us. I’m thankful for that, as I have not reached the grieving phase yet. I’m still processing the reality of what is actually happening.

Most families don’t learn about this type of prognosis so early. The most common is during the standard 20 week mark when people are trying to learn of the gender. I am not sure how long this baby will live inside me and how long this will continue. Will the heartbeat stop in the coming days? or will I carry this baby for several weeks, maybe even close to term? There is no way to plan or to know what will happen. As someone who likes to plan in advance, I find it tough to deal with so many unknowns. And just as it was with Ella, I find myself in another circumstance where I have no control and must completely surrender to Him.

It has been amazing to see the outpouring of support. I had a chance to talk to the director of String of Pearls today. That was a blessing. She has such a gift to help other families. It is amazing that she has the strength to do this ministry. And it’s not like she doesn’t have anything going on – she is a wife and mother of 4 children. Wow. We are meeting for lunch next week where she will give me all the information on how her program works.

I think the most reassuring is that there are people close-by that have experienced something similar and will help us navigate the journey that lies before us. We were alone with Ella’s diagnosis and had to be resourceful on our own, but the Lord has provided people this time to surround us locally. It is just nice to have that type of support.

For some reason, music is healing to my heart these days. In listening to the radio, songs that I’ve heard for a long time are taking on new meaning with this circumstance. This one resonated with me today.

I Still Believe
by Jeremy Camp

Scattered words and empty thoughts
Seem to pour from my heart
I’ve never felt so torn before
Seems I don’t know where to start
But its now that I feel your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don’t see, I still believe

Though the questions still fog up my mind
With promises I still seem to bear
Even when answers slowly unwind
It’s my heart I see you prepare
But its now, that I feel, your grace fall like rain
From every fingertip washing away my pain

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don’t see, I still believe

Well the only place I can go is into your arms
Where I throw to you my feeble prayers well in brokenness
I can see that this was your will for me
Help me to know that you are near

I still believe in your faithfulness
I still believe in your truth
I still believe in your holy word
Even when I don’t see, I still believe

I still believe (repeat 8 X’s)

Ohhh, I still believe, I still believe