Prayers needed, now more than ever

Today they took Emma's ventilator out at 1:15. She struggled to breathe for a while after that, and then she went to sleep peacefully. Even though she was sleeping peacefully, her respiratory rate was very low. She woke up again and fought harder than anyone should have to fight for each and every breath. I would give my life for her to be able to take even one easy breath. We all cried and cried watching her fight and struggle to breathe. She finally was getting tired, and I was begging her to fall asleep so that she'd breathe easier. Then she choked on her spit and probably some other secretions as a result of taking the vent out. So of course, she gasped for air even more and broke our hearts even more. You can actually hear all the junk in her throat and you just want to be able to clear it out for her; unfortunately, suctioning it out can make it even worse.

Finally, the respiratory therapist got permission from the PICU doctor to give her breathing treatments that will reduce inflammation in her throat and get rid of some of those secretions. As soon as Emma received that breathing treatment, she was out like a light and breathing well again...breathing less, but not fighting to breathe.

Which leads me to my next concern...Dr. Troup mentioned to us that there is a large fluid pocket in Emma's spinal cord that could eventually affect her arm movement. This would be a surgery for a later date. However, now we're seeing Emma's arms tremble...I've noticed it all day and especially now that she's sleeping. My sister noticed it, too. This is definitely something I'll mention to him tomorrow. I'm sure I'm totally overreacting, but I think I've earned the right.

My sweet sister is going to spend the night here tonight with Emma. Russell and I have such a hard time being here for 12 plus hours every day, and we can at least sleep at home. Somewhat. The nurses here are amazing, and what a blessing that we can go home at night, with some relative peace of mind. Now that she's having such trouble breathing when she's awake, we want someone to be with her to hold her hand and talk to her while she's struggling. Go ahead, call us bad parents for not being here 24/7. But I'm being open and honest. Now, if she were a 4-year-old asking for her mommy, things would be different.

At this point, they're just going to wait and see how her breathing goes. We have no idea what happens next. Unless she stops breathing again - then we go for another surgery. 12 hours passed between the first time and the second time she stopped breathing, so we don't know what to expect now.

I keep telling Emma how much we love her. Over and over. And I try to imagine that God has her in His big arms, cradling her. The thing I'm struggling with (and that millions of people have struggled with over time) is why a loving God can let her suffer. Alzheimers patients and their families, like my coworker and friend, Leigh's mother come to mind - why has she suffered for so long? This may sound like an awful statement to make, but if God is going to take Emma, then just take her...why make a baby suffer? You would think that the last thing a mother would want is for her child to be taken from her...but actually the last thing a mother wants is for her child to suffer. The selfish desire is to have her child with her...but I've learned quickly that the TRUE love of a mother overrides any selfish desires. And this is exactly why God gave His Son - He loves all the rest of us, ALL His children, so much that He unselfishly watched His heavenly Son suffer the most horrific tortures man could conjure up - a temporary pain so that the rest of us could have eternal life - life with Him without pain, suffering, or hurt. I have a better understanding of the love that God has for us - I can't imagine watching my daughter suffer, at my own will, for anyone else. John 3:16 takes on a whole new meaning as a parent.

So please pray that our daughter doesn't suffer. Russell and I have prayed many times that God would not only heal her spina bifida, but that He would protect her from all the other nasty things in this world. This prayer hasn't been answered...because here we are again at the hospital. But we're still praying. Praying for comfort, her suffering, healing of all her problems, big and small. Please join us in this prayer. I have tried all along to pray prayers of faith, for this is what God asks of us...but I'm going to be honest: I won't stop praying, but it's getting harder and harder to believe that He will answer our prayers. I will pray for healing for Baby Emma...always...but when she's suffering, it's easier to ask Him to just take her pain away, no matter how He does it.