She truly is our miracle baby!

When we first learned that Hope had an encephalocele, I wondered how I would be able to see the love and kindness of God in this situation. When one feels pain, you want to lash out at everything and everyone around you, and wonder why God has done this to you. I prayed that I would see our lives in the light of eternity, and that I would not grow bitter. And, praise be to God, He has shown me His love and kindness, even in the darkest moments. The past two days, He has shown me how much He cares for me, for our family, and for Hope.

We went back to the neurosurgeon yesterday for a followup. Hope had an ultrasound for her brain done first, so that Dr. Young could compare the ultrasound we had in the hospital after her surgery to where she is currently. Just as a reminder, they were doing the ultrasound to measure the size of the ventricles in her brain. These are the open pockets in your brain where cerebral-spinal fluid is stored. If there is a drainage problem, the fluid will build up, putting pressure on the surrounding brain tissue, causing damage if not treated--this is what hydrocephalus is. When we were in the hospital, the measurements of the ventricles from the ultrasound showed that her ventricles were on the large size of normal, but not abnormal (which is what every ultrasound before she was born showed as well). When we went in yesterday, the ventricles had decreased in size just a little bit! What a total miracle! Dr. Young checked her over, felt her soft spot, and said that he does not see a single indication of hydrocephalus. David and I were completely flabbergasted. I had thought that we would go in and he would tell us he wanted to do a shunt in 3 days, much like he said the last time about getting her encephalocele removed. Instead, he gave her a clean bill of health! How amazing! He also told us that if she had hydrocephalus, it would certainly have shown itself in this appointment--he believes that she is unlikely to develop it at all. As a precaution, though, we will continue to see a neurosurgeon in NJ. We gave him the name of the nearest hospital to where we're moving, and he had his scheduler call them up and make a follow-up appointment out there for 2 months.

Deep in unfathomable mines of never failing skill,
He treasures up His bright designs,
And works His sovereign will.

Today, Hope and I drove back up to St. Vincent to see a pediatric cardiologist. Hope had been diagnosed with ASD in the NICU. ASD is a family common condition where a small hole in the valves of the heart does not close properly. The treatment is to wait and see what happens--sometimes they close on their own, sometimes they never cause a problem even though they're there, sometimes they need surgical repair. This was our first visit with the cardiologist, and I wasn't quite sure what to expect. I was all prepared to ask what kinds of worrisome signs I should be looking for, what treatment options are, etc. Instead, he told me that babies' hearts develop with this hole in the womb, and frequently if they do echos in the NICU, they will see a heart that hasn't completely closed this. That is what Hope's echo showed, but now, it has healed! Again, I was completely blown away. God has formed her, and He has seen fit to heal her little body. What a miracle. What a kindness to us.

What's next? We will see a neurologist and a geneticist at St.Vincent right before we move. The geneticist will look for indicators of some large over-arching problem, and tell us if he thinks chromosomes are involved. The neurologist will help us track her developmental milestones, and give us guidance about what the steps are if she is falling behind developmentally. Hope is 2 months old now, and she is smiling, tracking with her eyes, and interacting with you when you talk to her. She does not have the neck and head control that she should, but I think that's justified at the moment! I've been trying to think of her head control as being closer to that of a 3 -week-old, based on when we came home from the hospital after surgery. If you think of it like that, I think she's doing ok--she's moving her head around, and working on holding it up, at the point I would expect about a 3-week-old to be. We'll just keep watching and waiting to see if she catches up. Please continue to pray that she will develop normally, that her brain will compensate for the small part that is missing. But most of all, praise God with us. Praise Him for His goodness, mercy, and kindness to us and to Hope. Pray that she will grow up to glorify Him and demonstrate His power.

Before Surgery Pictures

I happened to catch Rose and Hope in a cute moment the Sunday afternoon before Hope had surgery. I took a few pictures, and then I had David take some of Hope and me as well.

Yes, we did make it home.

I am an awful blogger. I just don't enjoy it. So that is my excuse for never putting up a 'We Made It Home!' post.
We did, in fact, make it home on Thursday. Dr. Young came by in the morning and told us that we were free to go. He said the ultrasound they did of the ventricles in her brain came back showing the ventricles slightly large, but that he wanted to wait and see what they did. We would've been able to leave immediately, but I had contacted Hope's pediatric orthopedist and asked him to come and see Hope in the hospital so that I would not have to make a separate trip to Indy. He was very obliging, and came around noon to see her. And, praise God, he said that while there is a slight click in her left hip, he believed it to be cartilage. He ordered an ultrasound of her hip just to make sure, and his diagnosis was correct. Both her hips look great--they both have very deep sockets, and there is no indication of hip dysplasia. Thank you, Lord! By the time we finished all that up, it was mid-afternoon. I finished up final paperwork, pulled the car around, and the nurse brought her out to me. We drove home through Indy traffic and pouring rain, but I was so glad to be home!
Since then, things have been normal. She's still eating and sleeping great. She's been a little cranky the past few days, but even that has been a little better today. Her incision still has a little bit of swelling, but it goes down a little more each day, and is already growing peach fuzz. Here she is, trying out her new range of neck motion with Grandma:


It has been blazing hot here recently. We went straight from cold, rainy spring to hot and humid summer. The kids and I got out the sprinkler and kiddie pool for Rose today, and they've been having a blast:

(The girl in the pink suit is our neighbor, not Ellie. Ellie is missing from all the pics because she was throwing a temper tantrum about not being allowed to turn the water on and off at her pleasure.)



Since I wasn't about to let sopping wet Carver hold the camera to take a picture of Hope hanging out with me, this is the best I've got: