At this moment, we are sitting in Juliette's room in the ICU at LeBonheur Children's Hospital.
Here's the scoop:
Last week, Juliette started having a bad cough. Hunching her shoulders into her chest and really looking bothered. To the pediatrician we went (we'd just been there for her 4-month check-up and shots on Monday). She had no fever or ear problems, so he sent us home and said to just watch her...because if it was a virus it was going to take its course no matter what we did. She was still sleeping normally and smiling and acting like herself, just coughing bad.
Thursday she still had no fever, no fussing, just coughing. Around 3 pm, I got a call from the teacher that Juliette now had a fever a little over 101. I went to pick her up and took her home...gave her some Tylenol that night and put her to bed early. She only woke up once to eat (she had a little catching up to do) and had no fever. Friday, she went to her Nana's house for the day. She was still feeling puny but didn't have a fever. By the time I got home at 4 that afternoon, she was a bottle behind her normal consumption...just eating slowly and not interested. I thought maybe it'd easier for her to nurse instead, so we just thought we'd forgo all of our weekend plans and settle in to get her feeling better.
Friday night was pretty awful. She woke up every 2.5 hours or so, with coughing and fever, Tylenol or no. By Saturday morning she was pretty much refusing to eat. Dr. Bubba (our SUPER WONDERFUL pediatrician and friend) had told me earlier that week if I needed anything that he'd be around over the weekend and to let him know. So I did. She napped some Saturday morning, but by the time he came to see her around 10:45, she'd not eaten anything for a long time and was completely drained of energy. Her eyes were open but sort of blank, her arms were pretty limp and she was wheezing pretty good. Dr. Bubba measured her pulse-oxygen rate, and it was very low. Very gently and calmly, he explained that this virus was going to have to run its course over the next few days, and he thought maybe we'd all feel better and less worried if we went ahead and went on to the hospital to get Jules some oxygen and monitoring. He said pack your toothbrush but don't drive too fast down there. He was so calm and reassuring that I really didn't have the chance to freak out. The man definitely knows what he's doing. He even stayed and chatted with us for a few minutes about his dog.
So I packed Juliette a diaper bag (full of stuff she wouldn't need at all), and nothing for us, thinking if we really had to stay that my mom would probably be able to bring something up to us and surely we weren't really going to stay overnight. Our doc called ahead to let them know we were coming, so when we walked into the ER they were expecting us. We got back to triage and they measured her pulse-ox level again and it was even lower. So low that we skipped the rest of the triage business and got straight back into a room to get Jules some oxygen. This is when things got scary. From what I can remember out of the chaos, they started giving her oxygen (and some sort of medicine maybe?) and then let me hold her for a while. It seemed like she was almost asleep when she woke up and started completely freaking out--beginning probably the worst 20 minutes of my life. She was screaming and wiggling so uncontrollably that I couldn't hold her anymore, even with Jonathan's help. Jonathan's dad (who is a doc and operates at the children's hospital where we are) was there by that time, along with J's brother Michael (they're in the same med school class).
Time really seemed frantic but somehow slow at the same time as we all endured watching Juliette struggle. It was a complete and total nightmare. The nurse came in a few times to help me but I felt totally helpless and had no idea what was going on or going to happen.
After the 20 minutes from h-e-double hockey sticks, the ER doc came in and explained that Juliette was wearing herself out trying to breathe and if they intubated her (put in a breathing tube), she could rest and have an easier time recovering. Since Jules hadn't eaten that morning, I had last pumped during her nap (about 8:30 am). It was 2:30ish by this time, and I was about to explode. I am SO thankful for this...because in that moment, instead of seeing the intubation as an opportunity to freak out, I saw it as an opportunity to go pump. In retrospect, I guess that was God's hand calming me in an unexpected way. I didn't really understand or give myself a chance to see how big of a deal it was...I was just thinking about needing to pump.
After the intubation was done (I was finished by this time), Jonathan and I got to see her and were told that she'd be intubated in ICU until she could breathe on her own more easily. Once we got to the ICU, the doctor there explained that Juliette has RSV which is a virus that has to run its course...all they can really do is be there to support her as she fights the virus. And that there isn't really a predictable or set time frame in which this can happen. It can be days or weeks...no one knows.
So here we are...it is Wednesday night and we are still here. Jules has improved each day we've been here... but she hasn't been ready yet to go without the tube. Once she gets off the ventilator, we will probably be here another couple of days for observation.
They are telling us there is a possibility that the tube could come out tomorrow. Obviously, we can be patient. Whatever she has to do to get better is what we're going to do.
I've been utterly punched in the gut to how powerless humans can be. All the bravado and hoopla surrounding man's innovation is trivial compared to God's overwhelming power and sovereignty. When you have a revered and trained doctor tell you, "we can't make this virus leave your child; we can only support her as she fights it herself," you realize how futile our own plans and efforts can really be.
Jonathan and I walked down to the chapel tonight. There was a basket with colorful sheets of paper, printed at the top, "Share a wish, a hope, or a prayer."
Written in child's handwriting, the top one read, "Lord, healing Aiden's brain is a piece of cake for you."
God is in control.
ps thank you for all the prayers, texts, calls, emails, and offers for help. We are extremely thankful for the support and love.