She's been sucking on her ET tube so much that today we tried giving her a paci, just to see what she would do. She liked it! I'm very encouraged by that since she hasn't had to use that sucking reflex yet in her five week life. I'm hoping that since she still seems to remember how to suck that feeding won't be as much of a battle as it sometimes is with CDH babies. There's still swallowing and reflux issues, but hopefully she'll conquer those too when the time comes. This morning they moved her IV that was in her hand to her foot so for the first time in her life both hands were free! That was fun. We also played with a new toy that we got her. As much fun as monkey, lion and hippo are I thought it was important that she learn about some other ecosystems too. The new toy is pond creatures: frog, fish, dragonfly/butterfly (we had much discussion today about which it really was) and a turtle. Clara approves. If she continues her progress as she has been, and no other obstacles pop up, I think that we will have her in our arms very soon. I'm still hoping for extubation this weekend.
Here are just a few photos and videos of today.
|Sucking on her paci!|
|I always swore I wouldn't put these big giant headband bows on a bald baby, but here I am. I can't resist. She's just too precious.|
|Checking out her pond friends...|
|She studies them carefully!|
|Snug as a bug in a rug!|
I’ve said this before, but it bears repeating. As I was driving to the hospital this morning, I caught myself feeling a deep sense of joy, contentment and excitement to be heading to the hospital again. I thought to myself how strange it is in many ways. I believe that God has planned for me to be a mother and I believe that he has given me a strong desire to have this new role. I’ve longed for this for a very long time. But I never thought it would look like this and I recognize that by the world’s standards and expectations that I should be angry and disappointed and sad and frustrated. But I just love being Clara’s mother. I was so excited to be driving to the hospital this morning, knowing that I was going to have another day to spend with her. That level of joy and contentment, even amidst difficult circumstances, can only come from God. Towards the end of his life, Paul writes in Philippians about learning how to be content in all circumstances. “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus… for I have learned to be content whatever the circumstances…. I have learned the secret of being content in any and every situation… I can do all this through him who gives me strength.” (Philippians 4). I understand what he means, because I am overwhelmed with feelings of joy and contentment right now myself. But I don’t know that it is something I have learned as Paul says. I think it’s just been given to me as a part of God’s amazing grace and by the prayers of so many.
Please continue praying for Clara's healing. Pray that she will be able to successfully extubate and take over the work of breathing all on her own. Pray that her lungs will continue to grow and inflate and that they will give her the strength she needs to reduce her pulmonary pressures. Pray that she will continue to tolerate feedings and that as we move to oral feeds in the coming weeks that she will learn to eat on her own as well. Pray that the chylothorax will not return and that she can continue to wean her sedation drugs. Most of all, continue to thank and praise our God who has made Clara so beautifully and has planned wonderful things for her life. He is the giver of all good things, including joy, contentment and peace.