Happy Half-Birthday!

We’re 6 weeks post- shunt revision, and finally, things seem to be looking upJ The swelling around her shunt has improved, and it seems to be working the way it should be for now. There is constant uncertainty with that little device! We’re in the midst of many follow ups- ENT/audiology (they want to fit her for a hearing aid in a couple months), neurosurgery (we’re scheduled for a CT scan of her spine this month),  orthopedics (more Xray’s at a year),  and we see her kidney doctor and developmental pediatrician this month as well. The specialist appointments give us lots of information, but it’s the weekly PT/OT that she gets that is becoming the “meat and potatoes” of her care. When we first started out, I thought therapy was a proactive approach to helping her meet milestones. I’ve realized lately that it will be much much more for her, and is probably the most important thing we do for her on a daily basis- besides giving her lots of kisses of course!

It is very hard to believe that 6 months ago, we were preparing to welcome sweet Meghan in to the world in just a few hours. The past 6 months have been filled with challenges, adjustments, and plenty of hard days, but also with joy, love, and a heavenly change in perspective. Oh my, how much our family has grown in these months. Meghan’s up to nearly 13 pounds of sweetness, and the sometimes imperceptible changes that take place in a baby as they grow have become celebrated joys for us as we watch her with a different awareness. It is admittedly difficult not to compare our daughters at the same ages- at 6 months old Addie was starting to crawl! Meghan cannot yet lift her head off the floor, or roll over….. but here’s what she CAN do:  follow us with her eyes, turn her head all the way to the left, reach for a toy, shake a rattle, blow raspberries, smile, LAUGH, arch her back and stomp her foot when she’s frustrated, splash in her bathtub, grab her toes- now even with her left hand!, burp loudly, kick her feet to play with a toy, melt your heart when she touches your face, and make me one thankful mommy. She would undoubtedly have been different from Addison in many ways, even if she was born without the neurologic challenge of hydrocephalus, or the scoliosis that further challenges her mobility. The 6 month mark is bittersweet in ways. The hope that she would be developmentally normal has faded into the reality that this sweet little girl will decidedly have to fight to accomplish things that come easy for other children. That makes my heart ache in a way I cannot describe. But it’s contrasted with absolute gratitude for the miracle that her life is, for the love she has brought to our family, and for how the Lord has used her grow me in ways I would have never imagined. Her life comes with a list of miracles, of answered prayers, of ways that He has shown Himself to be faithful, and of some unanswered prayers that I can only reconcile to His sovereignty. Happy Half-Birthday Meggy Moo.....I cannot wait to see what else I am able to add to the list at one year.

“When they see among them their children, the work of my hands,

they will keep my name holy; they will acknowledge the holiness of the Holy One of Jacob,

and will stand in awe of the God of Israel.” Isaiah 29:23

The Tap Dance

The last two weeks I have felt like we are on a crazy hydro roller coaster. When we got home from the hospital, Meghan was doing great apart from pain after her surgery. However, her shunt was working so well that she drained very quickly and we soon found ourselves in the Neurosurgeons office turning up the shunt setting. After that, we had a few of the best days we've ever had with Meghan- the real Meghan- when she feels good. Over the few days, her fontanelle continued to sink and we thought we were ok. Then overnight, it had raised back up, the swelling around the valve (the external part of the shunt) increased to the point where it was worse than it was before her surgery, and once again, she seemed a little off. At our 2 week follow up after surgery, our surgeon decided to tap the shunt again- this involves taking some fluid from inside the shunt through her skin. Since only one of the cultures from the operating room had come back positive, initially they thought it was contamination. Now with her symptoms, we decided to rule out infection as a cause of the swelling. She also decided to drain the excess fluid from around the valve, and wrap her head to see if we could get the swelling to stay down. A brain ultrasound, a couple needles, and a sweaty baby later, we headed home with our head wrapped Meghan in tow.

48 hours later, Meghan's cultures are still negative (thank you God!). Our surgeon called us today and after we talked for awhile, we decided that the plan for now is to turn her shunt back down again on Monday, and see if that resolves her behavior issues, and hopefully the swelling around the shunt. If not, we may end up back in surgery to replace the valve with a different kind that might help seal off the hole in her skull a little better. At this point, we aren't sure why this keeps happening, and it may have something to do with the fact that apart from her hydrocephalus, it appears that we may be dealing with another type of brain malformation as well, causing the pressures to be different than they would be with straightforward hydrocephalus.

I can honestly say the only thing holding me together right now is my family, my dear friends, and a lot of prayer. Even our doctor said we need to take things one day at a time. There is a significant amount of uncertainty that builds when for many babies, this is a "once and done" procedure- at least for a while- and we just want to get to a place where she feels good enough to start making some serious developmental strides! Since the surgery, she has learned to grab her toes- despite the fact that she cannot roll over, or even hold her head up on her own yet. We know this little girl is fighting through this, and we want so badly for her to continue to progress to whatever her capabilities will be. The back and forth can be a little discouraging at times.

Joe and I were talking on the way to the hospital the other day, speculating how different our lives would be if Meghan were like typical babies. We both agreed that while we wish every child could be born healthy, we feel our lives are different, but indeed so much better because of Meghan. She adds a certain weight to life. The kind that puts sorrows and hardships into perspective, gives us a great compassion for children (and their parents) with special needs, and makes us appreciate every day in a way we otherwise would not. It also means that when we feel joy, we feel it times a thousand- so much so that as they say, you are able to dance in the rain. We have hope because we serve an awesome God. So despite the uncertainty, we wait, and put our hope in the one who is writing her story, and ours.

We wait in hope for the Lord;he is our help and our shield. In him our hearts rejoice, for we trust in his holy name.  

May your unfailing love be with us, Lord, even as we put our hope in you.  

Psalm 33:20-22

Toes!!

Working on my reach...

This is what pitiful looks like.