Archives for 2010

I am writing this post for all of you, but I am also writing it for me. I need it. I have been struggling lately, and I too need to be reminded of these answered prayers, even when I am living with them every day.

I am grateful, but I want to be honest. This is hard.

If I haven’t mentioned it yet, Brooklyn is wearing casts on both of her legs. They cover her entire legs — from the waist down — and they are true casts…like the ones you or I would wear. Heavy, heavy casts that add about a pound to my little baby. They clink together when I pick her up, and they scratch my belly when I try to burp her. There are no cute toes to tickle, and baths involve plastic Jewel bags and a wash cloth.

I miss her legs, her soft legs. I miss rubbing her piggy toes, praying that she could feel my touch. I miss the excitement of watching her legs kick and bend…grateful for every single movement. They weren’t perfect legs, but they were warm and they were hers.

I thought that getting her started on the casting would be exciting. That we were getting her body ready for all the walking she’ll be doing some day. But every week, when I watch a man take a saw to my baby’s legs and then reapply heaps of plaster like some sort of art project, it all just feels so unnatural. A baby shouldn’t have to go through this. A Mama shouldn’t have to look at little swollen and bruised feet and the occasional open sore. She shouldn’t have to feel both grateful and sad that her baby is not feeling any pain. It is hard, and it is unfair.

But you know what? It is working. Every time those casts come off, I see swelling, but I also see her little legs starting to take shape. Little creases are appearing on the backsides of her legs, and knees are forming before my very eyes. And better yet, THEY ARE BENDING!!! About a month ago, when we started the casting process, Brooklyn’s left knee could not bend at all. In fact, it was hyper-extended, so we started at less than 0% “flexion.” Now? Well, we can bend that knee a whopping 70%, and we are only half way done. How awesome is that?!

The weight of the casts have also put her hips in place, and her feet are slowly starting to move into position. Both feet were severely clubbed, but she developed pressure sores after the first few castings, so we have to take it slow. But we are seeing progress. There is a 50% chance that this casting process will not “stick” and that Brooklyn will still require surgery for her clubbed fee, but with the way our prayers are working, I’m hopeful we will see total success.

So how is all of this an answered prayer? Well, for those of you who have been following our journey since the beginning, you know that our first few ultrasounds showed no movement in the legs. It wasn’t until our fourth ultrasound — and lots of prayer! — that a technician verified some movement. And then when Brooklyn was born, she was kicking away and even bending her right knee all by herself.

We know that she has hip flexors and quadriceps muscles, but it has been questionable whether or not she has “glutes” and it was pretty well agreed that she didn’t have hamstring muscles.

BUT…

Last week when they were getting ready to put on the new casts, the orthopedic surgeon and I were discussing our next steps and she agreed that Brooklyn probably didn’t have hamstring muscles. I hated hearing it, but I wasn’t shocked. However, when they began applying the new cast, Brooklyn started to kick and fuss and I saw a smile come across our surgeon’s face. “I don’t want to get you excited, but I actually think I may be feeling a little hamstring here,” she said.

What?! Wooooooo-whooooo! Of course, we have no idea if there is any strength in that muscle, but right now, I don’t even care. Hope is what my heart has been surviving on this whole time, so I am taking that bit of news and rejoicing for all that it could mean for my baby. She is not going through this for nothing. As our ortho surgeon has told us, “She will be a walker.”

And thanks to your prayers, I truly think she will be. While we were once told our child may be paralyzed from the waist down, we have now seen kicking legs, bending knees, and now maybe even working hamstring muscles. I mean, seriously, who knows what the future holds for our little peanut. NOTHING is impossible with our God.

I hold tight to these hopeful bits of news, but I am human and I admit that I still ask God for more. I don’t want to get angry, so I ask for understanding. He often answers by revealing parallels that keep me humble and assure me we are not alone.

While odds are most of you are not waking up at 5am to get to the orthopedic surgeon, you are being “casted” as well. We are all are going through some sort of hardship, and if you allow Him to, God can use those hardships to mold you into the person He intended all along. There may be swelling and bruising along the way, but in the end, when the cast is removed, lives can be changed and God can be glorified. You just have to allow Him to do His work.

Do I hate those casts? Yes I do. Do I hate that there has to be sores and swelling and bruises to get to the end result? Yes I do. Will I miss them? Not at all. But these casts are giving our baby a fighting chance of beating all the odds. A chance to walk in faith, dance with praise, and stand in awe of a God who can heal us all.

Yet, O LORD, you are our Father. We are the clay, you are the potter; we are all the work of your hand.
Isaiah 64:8 NIV

So I decided to write this little “series” on answered prayers for several reasons. First, I want to finally update all of you on Brooklyn’s condition without it getting too overwhelming and complicated (for you and for me). Second, I want you to see that God can and does heal (and is very creative in doing so). And finally, I want you to know that YOUR PRAYERS ARE WORKING!

The first major answer to prayer is that Brooklyn still does not have or need a shunt (a tube that drains any spinal fluid that builds up in the brain). This is a HUGE plus. As I’ve stated in the past, shunts can definitely save lives if they are needed, but they can also cause death if there is a malfunction that goes undetected. In fact, the mortality rate of children with Spina Bifida is 25% — which is pretty high — and the majority of those deaths have been attributed to undetected shunt malfunctions/infections.

In the past, children born with excess fluid in their brains were instantly shunted. However, as I’ve explained in  previous posts, our neurosurgeon and her team believe that if given a little time, some children’s bodies can find a way to deal with the excess fluid…and that is EXACTLY what Brooklyn is doing.

The reason this may be surprising is that Brooklyn’s ventricles were quite large in my womb already (in the “severe” category), meaning that there was already quite a bit of fluid build-up in her brain. However, in my womb, she was also leaking some fluid out of the hole in her back (where her defect was). That means that post-surgery — when they closed up that hole — odds were that her ventricles and the fluid build-up in her brain were only going to increase since there was no leakage point to help “deal” with the fluid. All of those factors considered, the chances of Brooklyn needing a shunt were very, very high.

But God is so good. Get this: Brooklyn’s ventricles have not changed AT ALL since her surgery. They have literally not budged in size. This is not typical. The neurosurgeon expected at least some increase, but instead, Brooklyn’s ultrasounds have been “stone-cold stable.” The look of subtle surprise on our neurosurgeon’s face told me all I needed to know: Our prayers were being answered.

Now, there is a chance that Brooklyn may still need a shunt down the road. But every day she goes without one is a very good thing. The older and stronger she gets, the chances a malfunction or infection decreases. Some kids end up with hundreds (yes, hundreds) of shunt revisions because of infections and malfunctions, and we certainly don’t want that. So every day Brooklyn goes without a shunt is a blessing.

Although we know what the future could hold, we remain hopeful. Our peanut’s head is pretty large (95th percentile), but as long as it stays within the growth curve and she doesn’t start to exhibit any symptoms that there is pressure in her brain, we are in the clear. The goal is to get through the first year of Brooklyn’s life without a shunt. If we can do that, then odds are she will never need one. Wouldn’t that be awesome?!

Our neurosurgeon has told us that if we don’t shunt Brooklyn, she will most likely have a larger head (called macrocephaly), but that is not the end of the world. She’s gaining weight like a champ, so she’s “growing into it” quickly. 🙂 And, quite honestly, we think she is cute as a button just as she is!

So there you have it. Your prayers are being answered!

And although you have all certainly done your part here, I can’t help but ask for more prayer. I mean, they are working people!

So…we humbly ask that you continue to pray that Brooklyn won’t need a shunt and that the fluid that is in her brain now does not cause any major cognitive challenges for her.

I can tell you with all of my heart that I will never ever again underestimate the power of prayer, and I hope Brooklyn’s story encourages you to never underestimate our God. He hears and, yes, He answers.

And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it.
John 14: 13-14

Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.
James 5:16