August 22

I wanted to give a quick update before we hit the hay tonight.  Vivi didn't do so hot on her breathing trials as the night went on last night.  She couldn't successfully complete the two hours.  That being said, we restarted 2 hour intervals of breathing trials today.  She had done well throughout the morning, but as we transitioned into the afternoon, she could only go 40 minutes without getting to tired.  When you are training for a marathon, you don't run crazy mileage everyday.  You have long runs once or twice a week, and you build up to them.  I believe that is what Vivi is doing, along with saying, "Excuse me, but remember who is in charge...yes, ME!"

My big concern throughout the day has been the quick growth of her girth....this girl has a belly!  We have dramatically cut back on her feeds (we were at 16 ml/hour and now are at 5ml/hour) and we are increasing by 1ml/hour per day.  After looking at her belly and realizing it had grown in a few hours, we have cut feeding completely for now and are supplementing her nutrition with TPN and lipids.  After X-ray, we know her little belly is full of gas.  Yet, you guessed it... am now asking for fart and poop prayers.  This poor thing, when she gets older she will be mortified.  We need to get that gas out of her system so she is less bloated and feeding more.

Our big news today--Viv was moved into a big girl bed.  A bittersweet moment for me, she is no longer small enough to fit in the isolet, but I now can lay next to her all day long if I want! Knowing I can be that close to her all day makes my heart so happy. A friend texted me tonight and said while she was in adoration, thought of Vivi in her big girl bed and thought of how our parents dote on us when we are sick.  She then thought God must be really snuggling close to Vivi, taking great care of her, especially now in her big girl bed.  I have decided I am obsessed with that image, and know in my heart it is so true!

I have been juggling a heavy heart and remaining positive.  I am realizing I had high hopes of leaving around this time.  We will be living at Children's for a month this Friday.  When Vivi was born, I assumed we would be leaving no later than the beginning of September.  After her surgery and the first week of kicking booty, my head was on that same time-line.  Here we are, going home a massive TBD.  I would be lying to you if I said I wasn't struggling with a breaking and inpatient heart.  I don't doubt God for one millisecond, but I can't help but sometimes look at Him and sigh, "really?"  What a lesson in patience, hope and immense faith.  God's timing is perfect, His plan in perfect...so it seems we are in the perfect place at the perfect time (at least I have to continue to remind myself of that!) Please keep the prayers coming.  They are going a long way these past few days :)