A Not So Fun Day

It's been a long day for us at St. Louis Children's Hospital. I had wake Ava up this morning at 6:00 am so she could eat some breakfast. She wasn't allowed solid food after 6:30 since she had to be sedated for her MRI. We checked in around 12:30 and they took us right back. They decided to start her IV while she was still awake so I was a little concerned but she did GREAT! She whimpered a little, but mostly just watched the nurse's every move. They even drew about 7 vials of blood and she just held her little arm out and watched.

I was a little concerned when she went straight to the anesthesiologist without even a whimper, but I must admit that a part of me was kinda glad to hear the nurse say that she kept calling for me as they were putting her under. She is a mommas girl!

About an hour later, our pager went off and we went back to the recovery area. She was OUT! She was needing a chest x-ray (for a different doc) so they decided to do it while she was asleep. We were allowed to go with her to the x-ray and that's when she decided to wake up. She looked at me and said, "juice, momma?" After the x-ray, she wolfed down some juice and animal crackers and we were outta there!

Next was our consultation with her surgeon. He showed us the MRI and explained exactly what we were looking at. The mass on her lower back is actually called a lipomyleomeningocele (what a mouthful). It is basically a fat pad that extends into her spinal region. What concerned him more was the dimple below her mass. The MRI showed that it opened directly into her spinal cord which poses a risk of infection (meningitis.) He said that if there was any nerve damage, this is where it would be. We are concerned about her bowel and bladder control, so after her surgery, we will be referred to a pediatric urologist. I asked when the surgery would be and he said, "When is a good time for you?" I said "ASAP." He said ,"How about the 19th?" So, next Wednesday it is. He said she will need to stay flat for 3-5 days after the surgery and will be hospitalized for at least a week.

We are feeling so very blessed and overwhelmed by the news today, considering how much worse her prognosis could have been. We are at peace with all of the plans for next week but are still requesting prayers for our family. This isn't going to be an easy week. My mom and I will be staying at the hospital with Ava the entire time while Chris and the boys stay at home. Chris will continue to work during the day and the boys will start school (without mom : ( ) then drive up to see us every evening. Not ideal, but we are counting our blessings that it is only for a week. Looking around the hospital today at all the precious children made us realize just how lucky we are. Thank you God for keeping Your eye on our precious sparrow until we were able to hold her in our arms!

Decided it was naptime right before they started

She just laid real still and watched everything very closely while

Grandma tried to distract her

One brave little girl!

In recovery and out like a light.

Off to X-ray while she's still asleep

Awake and putting away the animal crackers!