Philippians 4:4-9 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. 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.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
The past 24 hours have been filled with immense hope and tremendous joy. It was the recharge to our batteries that our little family needed. We have been beat up the past week and our faith has been shaken. But, once again Owen is showing us the determination and fight that he has and he is ready to work again. As we have mentioned before, they call the intense recovery of a heart baby the “heart dance”. It is two steps forward and one step back. Sometimes the two steps forward are streaks of positive news and great days. You can feel the energy in the room and feel lighter as you walk through the hospital doors. There is still the nagging dread of the one step back because you know deep down that it will inevitably come. Then sometimes when the one step back comes it lasts for a long period of time and you lose sight of the forward steps. Days become longer, your shoulders become heavier, your worry becomes deeper and you try desperately to leave the worry at the door so Owen doesn’t feel it. When you are in the midst of the dance it can appear ugly, chaotic, and have an intense lack of grace but when you step away and take in the dance you can see beautiful moments, light, joy and God orchestrating the most beautiful choreography that makes every step of the dance worth it.
We received great news again this morning in rounds. Owen’s lungs look much better compared to his x-ray yesterday. It will take a few days to determine if the formula change is in fact reducing the fluid in his lungs. Because of the improvement in his lungs they were able to start his “workouts” again. He completed a 30 minute “workout” this morning and rocked it! He had his lion and his giraffe by his side cheering him on the whole time too! He did so well that they thought about extending his time but decided to start him out slow. As with all steps to Owen’s recovery, slow and steady wins his race. Owen is having a little bit of trouble with the ventilator tube and has been vomiting when they reposition him. They believe that he has an oversensitive gag reflex and the tube is bothering it. Please pray that his lungs continue to improve, he continues to do well in his workouts, and they can extubate him soon. We know that he will be so much happier once that tube is out.
Owen and Mommy had the perfect afternoon together. At 23 days old he finally got to be held again. As always it is a big production but once he is laid in my arms all the fuss is beyond worth it. I instantly saw him settle as they placed him next to my chest, I placed my hand on his head and the other across his back. With my son in my arms and my husband at my side I felt an overwhelming sense of completeness. Since the day Owen was born, I have felt that my heart has been living in a warming bed on the 2nd floor of CHLA. Every time he cries or fusses it takes everything in me to not swoop him up and comfort him. It is a feeling I don’t think I can ever find words to describe. Being a heart Mom in the CTICU makes you feel incredibly helpless and out of control. You learn to improvise and find ways to be involved. We change diapers, help chose his bedding, watch his monitors, and stare at him for hours on end. We can’t wait for the day he is home so we can be 110% hands on with him. We are scared to death of this as well. How will we ever survive without 24/7 nurses, monitors telling us what is wrong, and the most skilled “babysitters” every night allowing us to get sleep? Maybe this hospital stay isn’t that bad for new parents.
Many of you have reached out to us requesting our address or asked how you can help. We would like to thank you immensely for your prayers and your support. We have said it time and time again that it truly is the greatest gift that we can receive. If you feel compelled to support Owen’s journey we ask that you make a donation in Owen’s name to Hopeful Hearts Foundation. The foundation has touched our lives and helps families just like ours as they are going through the trials of being parents of children with CHD. You can make a donation directly by visiting their website at http://www.hopeful-hearts.org/give.html
Our God is a God of miracles and we believe our little family will be home very soon! Each one of you have touched our hearts and your prayers have healed our son’s heart! We’re gonna bust out of here soon enough and can’t wait to introduce you to our lil’ Lion Heart!!!