Tuesday, April 20, 2010

More Hope!!

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! :)

Tuesday, April 13, 2010

And Away We Go...


That is basically where we are at right now. Lots and lots of appointments. I was putting them off, I admit, because that meant time away from the girls and really, I wasn't ready for that yet. I know that will be a big part of our life from here on out...but it is honestly a part I dread.

Funny how it's the little things that can get to you. I've always been that way though. I can handle the "big things" pretty easily. Maybe because I know only God can handle them, but it's the little things that I struggle with. It's the day-to-day stuff that makes me feel like I am lacking and that I am somehow failing. And letting the girls down is now a looming fear that creeps in way too often.

Many of you know that Emma was with us the night that we found out about Brookyln's Spina Bifida. Not the best situation, but in many ways, it helped relieve us of the decision as to what to tell her, when to tell her, etc. She knew from the start, whether we liked it or not.

Well, on the way home that night, I was trying my hardest to figure out the right thing to say to my little girl as I was still trying to comprehend it all myself. I told her that Brooklyn might have "sick legs." I told her that even though she might not be able to do all the things we can do, she is going to be a perfect addition to our family. She will teach us about God in ways we never imagined. She will be special, and she will be a very important part of our family.

After my pep talk, I was feeling pretty good about my words and the fact that I was doing a good job of hiding my breaking heart, when from the backseat came the smallest little voice...

"Mom, does that mean Brooklyn will be more important than me and Kendall?"


My worst fear...spoken by a 4 year old that had more wisdom and understanding than I ever imagined. My worst fear...before I even knew it myself.

As I desperately tried to backtrack -- telling Emma we are all made special by God in different ways and all play an important part in our family -- I felt a horrible sense of failure.

Even as I become more informed about all of the challenges we have ahead of us, it is still my biggest fear: Taking care of all three of my children in a way that makes them all feel loved, special, and important. Making Emma and Kendall feel loved even though Brooklyn will be getting lots of attention. Making Brooklyn feel loved even though she can't do all the things Emma and Kendall will be able to do. Making them understand that they will each make me proud in different ways. And that I love them all equally.

I know this is a struggle every mother with more than one child has. But somehow it has now been magnified...by like 100. Maybe it shouldn't be and maybe I'm the one magnifying it, but I would be lying if I didn't say it literally makes my heart ache.

The comfort I have is believing that God will also use this experience to make Emma and Kendall the people He intended them to be... compassionate, caring, accepting. We want more for our children, and I think this does give my girls an opportunity to experience life in a more challenging, but more fulfilling way. I just pray God will help me guide them in this direction. That the stress won't take over and that the moments we are together make up for the time lost. For the confusion.

So the decisions are being made. Assuming all goes as planned at all of our appointments next week, we will deliver at Northwestern, and Brooklyn will get her surgeries at Children's Memorial. I will have to have a C-section, which means there will be a few days when I sit in a hospital room by myself while Jeff waits in another hospital for our baby to come out of surgery and my other babies are at home being cared for by someone other than their Mommy.

These are days I have to choose not to think about. Because the thought of those days tear. me. to. p i e c e s.

I know this will not be easy. But God never said it would be easy.

As my bible study lesson so perfectly revealed to me this week...

"For it has been granted to you that for the sake of Christ you should not only believe in him but also suffer for his sake..." (Phillipians 1:29)

If my God can die on a cross for me so that I can spend a perfect eternity with my children, the least I can do is use our short period of worldly suffering for His Glory.

And I pray with all of my heart that all three of my girls learn to do the same.

Friday, April 02, 2010

Meet Brooklyn Hope

brooklyn profile

Today we had our fetal echocardiogram and -- praise God! -- our baby’s heart looks healthy. The doctors weren’t really worried there was anything wrong, but any time they discover abnormalities, they usually check out the heart just to make sure there are no other issues. Up until this morning, I wasn’t worried either, but as our appointment time got closer, I admit, I was scared.

We went to the same place I had my ultrasound, so needless to say, the feelings were welling up and my heart was heavy. My mom was there for comfort, and she kept me strong. But as I sat down on the same table in the same room we originally got the news, it took everything in me to keep it together. Thankfully, our ultrasound technician was extremely kind and was happy to chat, which kept my mind at ease.

Although a pediatric cardiologist still has to review the ultrasound tape to confirm that all is well, the technician said our baby’s heart looked “perfect.” Thank you, thank you, thank you, God.

As if that wasn’t enough, our technician also gave us a few more praises: She confirmed that we are indeed having a girl, and she gave us more than a few photos of our little sweetheart.

God is so awesome. This was supposed to only be an ultrasound of my baby’s heart, but by the grace of this technician, I got to see her precious face, her active hands, and even those tiny little toes. She waved to me, and at one point, gave us a thumbs up as if to say, “No worries, Mom, I am okay.” I can’t describe the joy my heart felt in that moment. Another image imprinted in my heart forever.

Also, now that we know for sure that our baby is a girl, I want you all to know that her name is Brooklyn Hope. Or, as her Daddy already calls her, “Brooke.”

When we first found out we were pregnant, Jeff and I quickly decided on names, and it was always going to be Brooklyn for a girl. But I admit, the night we found out she had Spina Bifida, I was tempted to change it. The next day, however, we decided her name needed to stay exactly the same because she was the same baby God had put in our life just 3 months before. He created her and has known her all along, and we wanted to honor that with the name our hearts chose in the beginning. She is our baby no matter what the details are, and we love her just the same.

Her middle name, however, did change. Originally it was going to be Marie, which is my middle name and my Great Grandma’s name. But we knew we wanted to also honor God and the impact Brooklyn was having on all of us, and “hope” just seemed to fit in so many ways.

“And we rejoice in the hope of the glory of God.”
Romans 5: 2b

While we certainly hope for our baby’s healing, more importantly, we have learned that God provides hope, comfort, and strength even in the darkest of days. Hope in Him gives us perspective, peace, perseverance, and even praise when challenges take us to places we never thought we’d be.

He is the light in our sorrow. A light that is so brilliantly shining through our little girl, that even she knows, it is all going to be okay.

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