Day 20 - Yesterday and Today

First of all, I need to thank all of you who are praying for Chloe. This is probably the scariest time of our lives and your support is such a blessing. I'd also like to ask that you pray for my friend, Jen, and her little TTTS survivor, Ava. Ava is back in the hospital where they are doing testing for her breathing/apnea problems.

Before yesterday Chloe's blood pressure and infection issues had improved and we were mainly worried about her lungs. Then we were once again reminded of how quickly things can turn.

On Thursday they had started noticing that her belly was distended. It wasn't bad, though, so they were just going to watch it. By yesterday at noon it had gotten bad. Her belly was huge and round and hard looking - like a little balloon with too much air in it - and it had a dark green undertone. The doctor and nurse practitioner came and spoke to me as soon as I arrived. The general message was that she had developed a complication with her intestines that meant she probably wouldn't make it. Two hours later I had to leave to pick Solana up from Pre-K. The nurse promised to call me if I needed to get back immediately.

Dave arrived during my absence and, after talking to the doctor, confirmed my understanding of the situation. After picking up Solana I left her with my mom (I thank God for her about a million times a day) and they dropped me off at the hospital. We had about 4 hours to wait for the pediatric surgeon and I pretty much cried the whole time. Dave was on the phone with Uhaul, DirectTV, and friends cancelling our move scheduled for the next morning. We had difficulty finding a priest to perform an immediate baptism. The chaplain came and asked if this was "emergent" and the nurse/respiratory therapist in the room both responded "yes" for me before I could process his question. Finally, a priest from UD arrived to perform the baptism. I was so grateful he was able to make it.

The surgeon arrived moments later and assessed the situation. He agreed with the doctor that there was probably a leak from her intestines into her stomach. This was poisoning her body and causing her belly to be distended, along with a myriad of other things (typical chain reaction of problems that happens whenever a premie gets sick). He decided that the best approach would be to cut an opening into her side so he could get a look at her intestines and then insert drainage tubes to get all that bad stuff out of her belly.

We consented and went to the parent's lounge during the procedure. I swear I have never prayed and cried so hard in my life. Dave and I still have headaches from it. The procedure went well. The surgeon could not see any diseased intestine from the incision so we know at least part of her intestine is healthy. The drains began working immediately. Lots of fluid and gook came out right away. We spent some more time with her before going home. I wanted badly to stay but I was so exhausted I could hardly speak.

Today
I arrived this morning to a slew of encouraging news. Her O2 levels are great - in the 20's (almost the same air that we breathe). We haven't seen O2 levels this good since week 1. Her lung X-ray looks amazingly better than it has in several days. White blood cell count is down - antibiotics are working. Drainage stopped - a good sign that the hole in her intestine was small and is no longer leaking (maybe healing).

It's difficult to know what to think/feel when they tell you one day you're going to lose your daughter and the next day tell you a bunch of encouraging news. My first reaction was to protect myself. I can't get excited about this and have them run my heart through a shredder again. But Dave made me reconsider. We need to be thankful for every day that we have with Chloe. Yesterday we thought she was lost to us and that was pure misery. If I live every day waiting to lose her I won't enjoy the time that I have with her. Today we had a good day with her. She was showing signs that she might make it. She was even a bit feisty again. At one point she was flailing her little arms around and grabbed hold of the IV line coming from her head. I called for help as I put disinfectant foam on my hands and the nurse rescued her IV from her strong little grip. Then, in hopes of calming her, I was able to rest my heands on the bottom of her feet and forearm (with the tip of my pinky finger in her firm grip). She took a pacifier and settled down right away as I hummed to her for about twenty minutes. She fell asleep! The first time I was able to comfort my little girl to sleep. I took the pacifier out of her mouth after her eyelids were so heavy that they shut and had a flashback to when I did the same thing for Solana. Yesterday I would never have imagined the opportunity to hum Chloe to sleep and I'm so grateful for that moment. She is sooo beautiful and such a sweetheart for giving me that gift.

It will be a week or so before we have a good idea on the hole in her intestines. (She did have more drainage today, afterall.) We will be praying long and hard all week that the good signs continue and that the hole is small and healing. If this is not the case we very well may lose her, afterall. I will try my very best to stay positive all week. I'll also be praying.