Dear Little Brother,
I must start by saying how sorry I am that it has taken so long to write you your first letter. Our hearts are nothing but filled with excitement and love as we prepare for your new place in this world.
So far, our journey with you has been a little difficult - the exact opposite of the journey we took with your sister not so long ago. But through the difficulty, we wouldn't change a thing.
We are learning more about life, and love, and the Grace of God, as each day reveals itself as another opportunity to bring Him glory.
When we first learned that there was going to be a You, we were indescribably excited. We made plans - our plans - and they all seemed to be working out perfectly. Until, everything changed about 12 weeks later. Our hearts were broken in a way we never thought they would be, as we prepared our aching souls for the fatal second opinion.
We cried. We loved. We prayed, and asked for prayer. At one point it felt as though the entire Southeast was falling on their knees, lifting our little family up in their prayers. In the midst of tragic undertones, we had hope, we felt love, and we knew we were not alone. In those dark moments, we - maybe for the first time - truly let go of our situation, because we knew we couldn't do it on our own, and let God be the Almighty source we so desperately needed.
When we let go of the plans our hearts had been making for quite some time, we began to feel God moving in a way like never before. That second opinion turned out to be not-so-fatal, after all. We unexpectedly left the ultrasound with happy tears rolling down our cheeks, holding hands, as giant smiles filled our faces. We were having a perfect little boy, who just happens to have spina bifida. We were having you!
You, sweet son, are the reason for all of this. You are the reason for our all-of-a-sudden change in perspective, our change in attitude, and the reason our faith the size of a mustard seed is able to move these mountains.
We're seeing God move through your oh, so tiny, developing body. We're hearing him whisper peace to our hearts, as he reminds us that you are perfect just the way he is making you.
Now we are so anxiously left with the joy and excitement, and sometimes fear, of what our sweet future holds, as you help make our family so much more complete.
Always remember, every part of you is prayed for.
Always know that you are loved - for the exact person you are.
And please never forget that you are wanted, oh so desperately wanted.
We can't wait to meet you, sweet boy.
Love upon love,
Mom
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Sunday, February 17, 2013
Tuesday, February 12, 2013
Moving ahead.
The blog has been silent, but our lives have been moving forward. We have felt the power of prayer and the hand of our God working ever so obviously in our lives over the past couple weeks. Specific prayers have been prayed and specific prayers have been answered. We believe that God can work a miracle, heal our sweet boy, and use our situation to bring Him glory. This continues to be our prayer.
Needless to say, we have done a lot of research on spina bifida in the last couple of weeks, and have become far more familiar with it than we ever thought possible.
In our research, we found that there is actually a surgical procedure that can be done in utero to close the wound on the lower back. Only three hospitals in the U.S. perform the procedure – one in Philadelphia, one in San Francisco, and one in Nashville. Since Vanderbilt Children's Hospital in Nashville is the closest facility to us, we have been in contact with them and have had all of my medical records faxed over for further review.
After looking at my records, they informed me that there did not appear to be any red flags that would initially prevent me from being a candidate for this surgery. So, we have an appointment to meet the surgical team on February 27th for an extensive evaluation. As there is quite the list of requirements that must be met in order for the surgery to take place - pertaining to me, the baby, and the location of his spina bifida lesion - we are still unsure of what our future holds.
If the evaluation proves us to be prime candidates for the surgery, we will have 6 days to make a decision. The surgery will potentially be on March 5th. It all seems a bit rushed, but only because it has to be. Their research finds that mothers and babies have the best results when the surgery is performed between the 22nd and 24th week of pregnancy. I will be 23 weeks 1 day on March 5th.
For the curious, there are many possible benefits – the biggest being that the procedure has a high rate of success at reversing the Arnold Chiari II malformation (which basically means that the brain is being pulled into the spinal column) and reducing the chances that our son will need a shunt to remediate his hydrocephalus (that is, too much fluid in the brain). It may also reduce the amount of damage that may be done to the spinal cord, but the research on the benefits here is uncertain. It might help and it might not.
There are a lot of risks to the procedure as well. The incidence of premature birth goes way up if we choose to have the surgery – almost a 50% chance of prematurity. There are risks to me as well. If the incision in my uterus ruptures, it could be life-threatening, to both me and to the baby. I will have to be mostly in a wheelchair for the remainder of the pregnancy, and won’t be able to pick up anything heavier than a jug of milk. That will be tough with a 15-month-old daughter. The costs of the procedure are much higher than conventional treatment as well. Fortunately, our insurance will cover it, but we will still have to pay 15%.
So we will have many things to consider in the coming months. We fervently pray that the Holy Spirit will lead our every step and decisions throughout our journey, and no matter what, we continue to give Him the praise. We ask for your prayers, too! We see God moving. He's working! Let's keep moving mountains!
A little more to update you on:
I went in for an amniocentesis yesterday (only because it is required prior to prenatal surgery.) In the ultrasound, Little Brother was kicking and wiggling up a storm. His heart still looked perfect, his lesion was still incredibly small (and low), and he is right on track with all his typical measurements.
He has been proving himself quite the kicker in the past few days, and Justin felt him for the first time tonight. With everything we're going through, baby kicks always seem to let us forget about it, at least for a brief moment in time.
We're lucky, blessed, and thankful for all we have been given and for this opportunity to share such a journey with our unique little boy!
Needless to say, we have done a lot of research on spina bifida in the last couple of weeks, and have become far more familiar with it than we ever thought possible.
In our research, we found that there is actually a surgical procedure that can be done in utero to close the wound on the lower back. Only three hospitals in the U.S. perform the procedure – one in Philadelphia, one in San Francisco, and one in Nashville. Since Vanderbilt Children's Hospital in Nashville is the closest facility to us, we have been in contact with them and have had all of my medical records faxed over for further review.
After looking at my records, they informed me that there did not appear to be any red flags that would initially prevent me from being a candidate for this surgery. So, we have an appointment to meet the surgical team on February 27th for an extensive evaluation. As there is quite the list of requirements that must be met in order for the surgery to take place - pertaining to me, the baby, and the location of his spina bifida lesion - we are still unsure of what our future holds.
If the evaluation proves us to be prime candidates for the surgery, we will have 6 days to make a decision. The surgery will potentially be on March 5th. It all seems a bit rushed, but only because it has to be. Their research finds that mothers and babies have the best results when the surgery is performed between the 22nd and 24th week of pregnancy. I will be 23 weeks 1 day on March 5th.
For the curious, there are many possible benefits – the biggest being that the procedure has a high rate of success at reversing the Arnold Chiari II malformation (which basically means that the brain is being pulled into the spinal column) and reducing the chances that our son will need a shunt to remediate his hydrocephalus (that is, too much fluid in the brain). It may also reduce the amount of damage that may be done to the spinal cord, but the research on the benefits here is uncertain. It might help and it might not.
There are a lot of risks to the procedure as well. The incidence of premature birth goes way up if we choose to have the surgery – almost a 50% chance of prematurity. There are risks to me as well. If the incision in my uterus ruptures, it could be life-threatening, to both me and to the baby. I will have to be mostly in a wheelchair for the remainder of the pregnancy, and won’t be able to pick up anything heavier than a jug of milk. That will be tough with a 15-month-old daughter. The costs of the procedure are much higher than conventional treatment as well. Fortunately, our insurance will cover it, but we will still have to pay 15%.
So we will have many things to consider in the coming months. We fervently pray that the Holy Spirit will lead our every step and decisions throughout our journey, and no matter what, we continue to give Him the praise. We ask for your prayers, too! We see God moving. He's working! Let's keep moving mountains!
A little more to update you on:
I went in for an amniocentesis yesterday (only because it is required prior to prenatal surgery.) In the ultrasound, Little Brother was kicking and wiggling up a storm. His heart still looked perfect, his lesion was still incredibly small (and low), and he is right on track with all his typical measurements.
He has been proving himself quite the kicker in the past few days, and Justin felt him for the first time tonight. With everything we're going through, baby kicks always seem to let us forget about it, at least for a brief moment in time.
We're lucky, blessed, and thankful for all we have been given and for this opportunity to share such a journey with our unique little boy!