Thursday, June 17, 2010

"Oh, trouble, trouble...

“... trouble, trouble
Feels like every time I get back on my feet
she come around and knock me down again

Worry...Oh, worry, worry, worry, worry
Sometimes I swear it feels like this worry is my only friend”

Ben, Charlotte, and I had a UAB appointment this past Friday and I have been meaning to give everyone an update, but VBS has kept me busy. Sorry for the wait. We went down Thursday evening along with my parents and stayed with my oh-so hospitable grandparents, because our appointment started in the morning. This visit was a little different than the last one, because I not only had an ultrasound to see how Charlotte was progressing but also met with a genetic counselor, a rehabilitation Doctor from Children’s, the head of the Spina Bifida department, and one of the neurosurgeons from UAB. It sounds a little overwhelming, but it was nice to have many questions answered and to see what a coordinated team UAB has for Charlotte.

The ultrasound was done first by an OB specializing in high risk pregnancies. He or one of his team will be delivering Charlotte in a few weeks. The ultrasound showed no major changes from our last visit which was quite a relief for me. One ventricle in the brain is slightly more enlarged than another, but its change has not been enough to cause any alarm. I will be meeting with him again in four weeks for another ultrasound and to discuss the actual birth in more detail.

Next we met with the genetic counselor and the rehabilitation doctor. The genetic counselor came in case something showed up on my ultrasound to indicate the defect might be genetic rather than random. Fortunately, this was not the case so I will no longer be working with her. Next we talked with the rehabilitation doctor about the specific problems Charlotte might face. He couldn’t have been nicer and did a great job of explaining everything. First we discussed Charlotte’s feet. She might have trouble in this area ranging from flat feet to weak ankles and the possible need for braces. Next we discussed the bladder. The more major problem is a Neurogenic Bladder, meaning she has trouble fully emptying her bladder causing UT infections and possible back up into the kidneys which can lead to permanent damage. She will be monitored for this problem, and the usual solution is Clean Intermittent Catheterization (CIC). This simply means emptying the bladder by inserting a catheter and draining urine. The catheter is removed each time, and the procedure is repeated four to five times during the day. The less physically harmful problem she might face is if she is unable to control the muscles that stop bladder and bowel functions from happening. Some children can learn a schedule, and the doctor informed us there are medicines that force the bladder and bowels into scheduled release; so she could learn what time she has to go to the restroom.

We also met with Betsy the SB coordinator. She was extremely kind and explained she would be our “go-to” person with any questions or concerns before and after Charlotte is born. I have to say that the UAB team is pretty amazing. They all seem to be passionate about helping children and are very well organized. Betsy gave us a book on SB called Health Guide for Parents of Children Living with Spina Bifida. It has been daunting and helpful all at once, and I’ve pretty much read it cover to cover.

The neurosurgeon was last, and he explained once again how and when this opening happened (first 26 days of life). He also explained how they would go about closing the spine. The surgery will happen within 24 hours of delivery and typically takes from 1 to 3 hours. He informed us they would be watching her in case she needs a shunt, which 80% of children do with SB in this location. He then gave us the wonderful news that I can hold her on a pillow (avoiding the back) soon after surgery and that breast feeding can typically start three days after surgery. We had all been preparing for her having to be in an incubator in the NICU for 2 weeks without being able to have direct contact, so it was wonderful to hear that this would not be the case. We finished up the meeting with a few more questions and then headed back to my grandparents.

Emotionally, I had several rough weeks right after we found out, but I had started to feel like I was finally on the road to acceptance. However, the road to acceptance is paved with potholes and sharp turns. I had decided not to do much internet research after we found out, because I knew it would always give me worse case scenarios. And, I worried about accuracy. I was starting to accept that Charlotte was going to have problems but did not fully realize what they would be. The unknown is always hard, but I believe there is also some truth to the statement “ignorance is bliss.”

Right after our appointment I felt a huge sense of relief to have so many questions answered and to know I would have contact with her sooner. Yet, as time has passed, I have been a bit overwhelmed by the future. Now that I know in detail, the complications it feels as if I’m grieving all over again. I know things could be worse but that doesn’t mean things are easy. I’m always wishing it could be me and not my baby girl that has to go through all this. I think part of these anxieties stem from the fact I’m already in my third trimester, and the date is soon approaching when little Charlotte will be here. I’ve often wondered how I would handle a “normal” pregnancy/birth and now my mind reels at the idea of going through something different. I get overwhelmed that I probably would fail as a parent to a child with no complications; so how on earth will I give Charlotte all that she needs? Will I be able to spot the signs of a need for a shunt, and a backed up bladder? Will I be able to monitor her in such a way that we can catch complications before they get bad? Will I be enough of a mother??? In my mind I know that even if Charlotte were perfectly healthy, I would not be enough. I am a sinner through and through. Only God is enough for Charlotte….but in my heart I so desperately want to be everything for her.

I also worried that Charlotte might have a hard time accepting the body God has given her. It hurts to think she might view herself as less because of her complications. I’ve always struggled with my self image; thinking I was not pretty and placing too much importance in being physically attractive. I struggled in this area, and I am healthy. I imagine that it will be so much harder for her, and it kills me. This world is a tough place to be if you are not physically perfect, and every magazine and TV Ad is spotting ways to help in the search for perfection. I already know that I will think Charlotte is the most beautiful thing I have ever seen. Yet I want so much to protect her from these lies and to help her realize that her worth is found in God. I’m already praying that she will fully understand that this is exactly the body God wanted for her, and it is made in His image to glorify Him.

As always, I would ask that you pray for Ben, Charlotte and me. I would appreciate if you would pray that I have peace and accept the bread God has given me. Please pray for strength for Ben. He has had to be my rock through all of this and that can’t be easy. And please continue to pray for Charlotte: for her health, for sound mind and judgment for the doctors working on her, and for her future relationship with Christ. Thank you all for your support. I literally do not know what I would do without it. I thank God for all of you.


Elizabeth said...

Oh Esther, here I go again - first comment. My heart is weeping with you just because being a mom - well - all that you said - you said it so perfectly and you will be the best mom for Charlotte. You will. You are already. she will be and is a beautiful little girl - and you, Ben, and Charlotte are so in our prayers.

Precious precious little baby girl - I don't have the right words but you are reflecting our Savior. I see Him.

See you tonight at VBS family night.

Francie Likis said...

Thank you for the update, Esther. I continue to be in awe of your strength and know you will be a wonderful mother to Charlotte. Last night I was flying to Nashville and sat next to the head of neonatology at Vanderbilt. We were talking about NICU care, and I remembered that I had been meaning to tell you that I think the NICU doctors and nurses will be incredibly supportive of breastfeeding and bonding. They will do all they can for Charlotte to be in your arms as much as possible. While the NICU isn't a place anyone wants to go, the care there is amazing. I continue to keep you, Ben, and Charlotte in my prayers. Sending lots of love, Francie

Anonymous said...

It takes a very spiritually strong person to recognize the positive aspects of really hard situations - like your thankfulness in getting to hold and breastfeed Charlotte sooner rather than later! I have heard from several mothers that the time of waiting while a child is in the NICU is far more difficult than years spent trying to get pregnant or months waiting for delivery day. I am praying that this time would go by as quickly as possible. Charlotte will be healed, whether in the womb... in this life... or in the next. Just like the rest of us. :) You will be (and already are) an amazing mother to Charlotte, otherwise God would not have chosen you for her or her for you. This poem means a lot to my family, you may have heard of it before. I've never read it without crying, though. Sorry! Love you! Dana

A meeting was held quite far from Earth!
It's time again for another birth.
Said the angels to the LORD above,
This special child will need much love.

Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From the folks she meets down there.

She may not run or laugh or play,
Her thoughts may seem quite far away,
In many ways she won't adapt,
And may be known as handicapped.

So let's be careful where she's sent,
We want her life to be content.
Please Lord, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,

by Edna Massionilla
December 1981

LB said...

Esther, I have tears in my eyes as I read this!! What a wonderful mother you are going to be!! You and Ben and Charlotte are on my mind a lot, and I do and will continue to pray for peace, comfort, strength, wisdom, excitement, joy, etc. etc. I agree with my mom--in reading this, it is so evident that God has designed you to be her mom. She will feel so loved and so secure; I know that she will. Love ya'll!!!

(p.s. her nursery is absolutely beautiful!!!)

Vicky Patton said...

Dear beautiful Esther, there are no perfect mothers so don't put that on yourself. However, you and Ben do have a perfect God there with you and He will help you...I've always clung to Is. 40:11 that promises "He gently leads those that are with young." Welcome to the club of those who have calloused knees--believe me, parents are always praying because we know our limits and we go to the One who is unlimited in wisdom, power and love (even with our grown children)...You already know these things; I will be praying that you can rest in the truth and that you will focus your attention on what the Lord has for you right now this moment...not next week or next month, etc. When those future days come you will be given all you need to face them one moment at a time...Looking forward to all of the joy God has in store for you as you love, care for, and enjoy precious little Charlotte...I have no doubt that one day she will rise up and call you blessed!

betty barber said...

Esther, I just read your latest blog and you never cease to amaze me. You are a wonderful soul and DaDa and I have loved you from day one. The love that you have for Ben and the Lord is so impressive and will sustain you through anything that lies ahead. We can't wait to see and hold little Charlotte. She will be a blessing and inspiration to us all. Of course she is being prayed for by everyone we know here in Murfreesboro and even from the other side of the globe. Love you all three. Mimi and DaDa