pregnancy

More Hope!!

April 21, 2010 by Lisa

Today was an awesome day! We met with the pediatric neurologist, and she is absolutely wonderful. She is extremely knowledgeable (well, duh… she is a brain surgeon), but she is also extremely compassionate.

I was so nervous about meeting her… about finding out all sorts of clinical details from some genius doctor who would talk over my head and give me all sorts of gloom and doom scenarios. I expected this to be our reality check. A day when we would receive knowledge that would take away the comfort of the “unknown” and leave us with just our faith. I prepared myself for the worst, knowing that no matter what we learned today, I would still choose to hope for the best.

But that wasn’t how it was at all. Immediately, I felt at ease when I met the doctor. She was very friendly (and quite fashionable I might add!) and was interested in what we wanted to know. She was very forthcoming with information, but waited for our questions and truly took her time with us.

She started off by saying that no matter what our ultrasounds are showing her, it does not give us an indication of what Brooklyn’s condition will be. She has seen a wide range of scenarios, and every child is different. Common sense, sure, but I expected a medical professional to be more black and white. But let me tell you that all that gray is a HUGE comfort to us.

She told us that she has seen children with defects in the upper part (thoracic) of their spine walk successfully, while others with very low (sacral) defects can’t walk at all. In other words, you really don’t know those types of details until the baby is born. Brooklyn’s defect is in the mid-lumbar/sacral area, so there is a lot of hope that she will be able to at least walk with braces. Her clubbed feet will have to be adjusted, but once they are, walking with assistance is a very real possibility.

Long term, she may or may not end up having to use a wheel chair. That will depend on her quadriceps strength, her weight, and her personality. It will also have to do with how much we motivate her and encourage her to be independent. The hospital really encourages independence, something I know Jeff is extremely committed to and ready to tackle. Heck, if he has his way, she will be running marathons! I am committed to this as well, but I know it will be hard as the Mommy. As the neurosurgeon told us, she will have to pick up her toys and make her bed, even if she has to do it differently than her sisters. We have to push her so that she can have a full life, even if it that means it’s a little hard on us in the process.

The neurosurgeon also told us that she wasn’t concerned with the fluid in her brain (hydrocephalus). It is only mild, and it is very common. Once the defect in Brooklyn’s back is closed, they will closely monitor the fluid levels in her brain. In fact, the goal is to NOT use a shunt (to help drain the fluid in her brain) unless absolutely necessary. I won’t bore you with all of the medical details, but while shunts have saved many, many lives in the last 30 years, they also create lots of complications (infections, mortality, etc.). So whereas 20 years ago they would have quickly put in a shunt, they now wait it out to see if the body can heal itself and learn to absorb the fluid. It’s a little more of a “cutting edge” approach, and Jeff and I are on board 100%. This may mean that Brooklyn will be in the hospital a little longer (an average of 3 weeks), but every day she gets older and stronger without a shunt is an advantage. The surgeon assured us that if they see any evidence that a shunt is needed, they will definitely use it. And they will only release Brooklyn from the hospital when they are sure she is stable and truly ready.

We also learned about possible feeding challenges (very common), learning challenges (math can be difficult), and the logistics of moving Brooklyn from delivery to surgery, as well as the series of events that will take place while she is at the hospital.

In the midst of all this information, we also talked about personal stuff…my pregnancy, our girls, her children. She referenced her other patients by name, and she told us she couldn’t wait to meet our little girl. I believe her. She made sure to introduce us to the very nice office people I talked to on the phone. They were just as friendly. As Jeff said, we felt like we were becoming a part of a family. And that was such an amazing feeling.

I can honestly say that Jeff and I could not feel more confident that this is the perfect surgeon to operate on our baby. No matter what the outcome, Brooklyn is going to receive the best care. I know these people will not only take care of our baby, but care for her.

Once again, our prayers were answered. Keep ’em coming! 🙂

When Doubt Creeps In

March 24, 2010 by Lisa

Today was a bad day.

And while I know what you are thinking, the day was really like any other bad Mommy day. It was a day of way too much crying, way too much whining, way too much yelling, and way too many Reese’s peanut butter cups (don’t you dare ask how many…)

It was a day when bedtime couldn’t come soon enough and once it did, the Mommy regrets came, along with the urge to run into their bedrooms to hug and apologize for all the wrong things I did.

But instead of the “at least there is tomorrow” thoughts that usually provide some peace, that is when it hit me. And this bad day only got worse.

The questions and fears and tears came out of nowhere, and they hit me hard. Really hard.

If I can’t handle a day like today, how can I handle a “bad” day once the baby comes?
If I have no patience now, how will I possibly have the patience for the challenges ahead?
How can I provide the emotional support for three precious little girls when I am such a mess?
How can I do this?
Clearly, I can’t do this.
There is no way I can do this.
God, you didn’t pick the right woman.

The doubts just kept coming, and the cries to God were loud and painful.

Oh God, I just want her to be okay. I want this all to just be okay.

After a call to Jeff, I felt a little better, but my heart was extremely heavy. And then I was led to a copy of the sermon our pastor gave 2 weeks ago that I’d been meaning to read, and here is the verse that I saw:

“Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; and perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” (Romans 5: 3-5)

The verse instantly provided peace, but as I reflected on it a little more (while cleaning toilets no less), it occurred to me…

This is not about who I am now, but who I will become from this experience. In other words, God will use this experience to make me the Mom I need to be to this baby…and even the Mom I need to be for Emma and Kendall. He will give me the perseverance and the character. And the hope that will make me turn to him when I feel I’m not enough.

You see, it isn’t about what I can’t do. It’s about what God can do.

Since we started our journey, a lot of people have told us that God “chose” me and Jeff to be this baby’s parents. That He only picks special people to take care of such a special child. And I’ll admit, those words have provided a lot of peace and reassurance. But in some ways, they’ve also provided a little bit of pressure. And for those of you that know me, I don’t take pressure lightly.

But now, after tonight, I’m not so sure I believe those words. I think God could use any one of us to do anything He needs us to do. The point is not that Jeff and I are “special” or even the “right” people for this job. The point is that His power is so great that He can use even us to do His work. We just have to allow Him to work through us.

That knowledge gives an enormous amount of comfort and peace to my soul. It renews my heart and encourages my spirit.

“I can do everything through him who gives me strength.” (Philippians 4:13)

As God forms this precious life inside of me, He is also forming me. What a blessing. What a comfort. What a God.

The Beginning of Our Journey

March 17, 2010 by Lisa

I know the last few posts haven’t been very informational, but I do intend to make this a place where you can find out the latest on our little one. However, I have a feeling I will also use this as a place to share my emotions, so I’ll try and label future baby updates clearly in case you want to skip all the mushy stuff! 😉

I realize some of you might not actually know what is truly going on with our baby, so I will start at the beginning and do my best to be concise. As you can imagine, I could write 100 posts on the last 13 days, but I’ll stick to the key points this time. Thoughts and reflections will come later…trust me, they are brewing.

Almost 2 weeks ago, we went for our routine 18-20 week ultrasound. We decided to find out the sex of the baby for the first time (I finally gave in), so we decided to bring Emma, our 4 year old daughter, with us (more on that later).

However, the sex of the baby became secondary once we learned that our baby has Myelomeningocele, the most severe form of Spina Bifida. Basically, during the early stages of development, our baby’s spinal cord did not form correctly and actually failed to properly close. This means part of her spinal cord is literally sticking out of her back, leaving nerves exposed. Although this doesn’t always lead to permanent nerve damage, it looks like it has in our baby’s case.

The doctor was unable to visualize any movement in either of our baby’s legs from the knee down. In other words, she wasn’t kicking, and we couldn’t get her to change position during the ultrasound. In fact, we have a photo of her with her leg sticking straight up in front of her…an image forever planted in my heart. This may indicate some level of permanent paralysis in her legs. Both of her feet are also clubbed, a secondary effect from the Spina Bifida.

Because she only weighed 7 ounces during the ultrasound and wouldn’t change position, the doctor was unable to see just how much of her spinal cord has been affected. This is something we hope to find out at our next ultrasound, which is scheduled for the beginning of April.

The most concerning information was that our baby also has mild Hydrocephalus, which is unwanted fluid in her brain. This is the result of her exposed spinal cord pulling down on her brain (called Arnold-Chiari Malformation) and obstructing the correct flow of brain fluid. This is very common in Spina Bifida. However, as the spinal cord continues to pull, there is a chance that this fluid can continue to build up and put pressure on her brain. If that happens, there is the risk of mental challenges as well as physical challenges. Right now, our baby’s fluid levels aren’t overly concerning, but the next ultrasound will tell us if it is stable or if it is increasing.

So what does all of this mean? Well, it means that our baby will need surgery after she is born to cover her spinal cord. She may also need to have a shunt placed in her head to drain out the excess fluid. These are often permanent. She will also require surgery at some point to correct her clubbed feet.

As far as what it means long term, we just don’t know. There is a chance more nerve damage will occur as our baby grows these next 19 weeks, but we are hopeful that God will prevent that from happening. We do not know if our baby will walk on her own some day, but, again, we our trusting God’s plan for her life and will patiently see what He decides.

All of this was totally unexpected. Both of Emma and Kendall are active, healthy little girls. This does not run in our family. Only 1 in 1000 babies are born with this condition…1 in 1000. That number still blows my mind.

None of this is easy. Writing this isn’t easy, but God is putting it my heart to share our baby’s story so that people will pray for her…and boy are they praying! We have been overwhelmed at the amount of support and love we have received these last few weeks. God is so good! I can’t tell you what an honor it is to carry a life in my womb that is already glorifying the Lord so much. Although I would never choose this for our baby or our family, in many ways, I actually feel blessed. I can’t wait to see what God has in store for our precious angel. We are celebrating her life, and I am falling more and more in love with her every day.

Yes, the journey ahead is a long one. We will have many big decisions to make and a whole lot of learning to do. But I know now more than ever that God is with us every step of the way. Some days He will guide us, while others He will carry us. But He is there and always will be. We can feel it.