Our Gift

Some of you know that I have had several blogs in the past that I have deleted, mainly because I have found them to say nothing too significant. I now have something significant to say, although in some ways, I wish I was back to rambling about nothing important on my former blogs.

Our precious baby girl, Camille Lynne, was born on June 2, 2009. She was born 4 1/2 weeks early because I had low amniotic fluid levels (more about my pregnancy and delivery on another post). She weighed only 3 pounds, 10 ounces, which was very, very small for her gestational age. Because she had difficulty breathing at birth, she was flown by helicopter to the NICU at Scott & White Hospital in Temple, where she stayed for exactly 4 weeks, first for breathing issues, and then for feeding issues.

At first, I thought the only problem was that Camille was having difficulty breathing and was small. However, the doctors at Scott & White were most concerned that not only was Camille's body small, her head was small as well. Generally, babies who are growth restricted in utero (like Camille was) are still born with large heads because the head is usually spared from the growth restriction. Typically, the baby's length is the first to be affected, then the weight, and then the head. Camille was the opposite: she was long in length, but with a very low body weight and a small head. This obviously was a huge blow to us to think about something being wrong with Camille's head and therefore brain, but I just kept hoping that was how she was made--with a little body and a little head. Henry was always proportioned that way, although on a much larger scale. He is slightly above average in length, while his weight and head are slightly below average. And he is the healthiest, smartest, most creative, amazing little boy I know. In addition, the NICU staff ran test after test after test on Camille, all of which came back negative for abnormalities (more on the rollercoaster ride of tests too on a later post). Of course, I was still very worried. I made the terrible mistake of googling babies born with small heads, and almost threw up at what I read. But, I just kept hoping and praying desperately that the NICU docs were too focused on abnormality and finding what was "wrong" with Camille when it could be nothing.

However, when we got home, we had a follow-up with our pediatrician. Normally, our pediatrician is very laid back and laughs at me when I bring Henry in for random minor things that I think are major catastrophes. He is essentially the perfect pediatrician for our family because he never gets all worked up about things, and remains calm and reassuring, which is exactly what I need, as I am the complete opposite, especially when it comes to my children's health. I went to this follow-up visit fully intending for our pediatrician to say "Oh, her head is small, but that's nothing. She'll be fine. Don't worry." I thought we would laugh together about how ridiculous the NICU doctors were for thinking that this was such a big deal and for overreacting about something that was nothing. I, however, was wrong. Our pediatrician, like the NICU doctors, is also concerned about Camille's head size. His was non-committal on her prognosis--he did not doom her to a life of severe mental deficiency, but he didn't say that for sure would not happen as well. He basically said what the NICU doctors had told us, but that we had refused to accept. Camille's small head size indicates that it is likely that her brain growth was restricted, and therefore, it is likely that she will have some mental deficiency in the future. This could range from minor developmental delays and learning difficulties, to severe mental retardation. There is no way to tell at this time how severely she will be affected.

Her prognosis also depends somewhat on what caused this. Usually, a small head is due to some sort of maternal infection in pregnancy, but the NICU doctors had tested Camille for all of the typical infections, and the results were negative. Camille had undergone chromosomal testing as well to see if that could be the cause, but the end results on those were negative as well (the chromosome testing is a whole other story in and of itself, but I'll tell that on a later post too). With those two things ruled out, then it appears that the cause is either severe growth restriction due to a placental problem, or some sort of genetic abnormality (there are thousands of genetic syndromes out there--believe me, I googled it--and we could test forever and still not know if it was a genetic cause or not). Our pediatrician and OB are inclined to believe that it was severe growth restriction due to the placenta being bad. A bad placenta could have caused the low fluid and the growth restriction. According to them, there is nothing I could have done to prevent a bad placenta. As our pediatrician said, "It was just plain bad luck." I don't know if this makes me feel better or worse. On one hand, I really, really struggled with wondering if I had done something to cause this. All of the doctors involved kept assuring me that I did nothing to cause this--that it just happened--but as the OB who delivered Camille said, "It is human nature to want to find out why this happened, and human nature to blame yourself." So in some ways, it makes me feel better that either way, placenta problem or genetic cause, I did not cause this. It was just "bad luck" and "nothing I could have done to prevent it from happening". But in other ways, that just brings on the "Why Me's" in full force. Why, then, did this have to happen to me? Why, then, do I have such bad luck?

The days following our visit to our pediatrician were probably my lowest, when I realized that I needed to accept that Camille might have these sorts of issues in the future. My lowest crept even lower over the next few days as I once again scoured the Internet for info on children with small heads. The info out there is not good. I just sat at my computer with tears rolling down my face as I read that most children with small heads like Camille's do suffer from mental retardation, seizures, facial and cranial deformations, etc. I found several stories of children with this condition, some of which fared pretty well, others who did not. One story in particular was about a little boy who was completely wheelchair bound, unable to talk, walk, or even understand what was said to him, all because he had a small head for unknown reasons.

It was at this point that I truly did not think I could go on. I could not make it. I could not do this. I could not live with the possibility that my child would have these sorts of difficulties. This was my worst nightmare, every parent's worst nightmare. I had thought that having my child in the NICU for 4 weeks was the worst it could get, but this surpassed that ten-fold.

I truly wanted to die in these moments. I could not imagine any worse pain than what I felt then. At likely my lowest point, my husband proved once again how truly amazing of a husband he is and how blessed I am to have him in my life. He snapped me out of my ultimate pity party, and said, "No matter what happens, she is a gift. She is a blessing."

And that is Truth. All of the lies Satan has been telling me--that I can't do this, that I can't go on, that my life is over--those are not Truth. The Truth is that Camille is a blessing, a gift from God. God gave her to us. Whatever happens with Camille, that will always remain true. We refuse to see it any other way. I once heard someone say, probably my again very wise husband, that God does not make mistakes. He doesn't look down at something that has happened and said, "Oops, I didn't mean to do that." Now, please don't get me wrong that I think that God gave Camille this condition, and that it was His will for her to have these difficulties. I truly do NOT believe that God wills these terrible things to happen. As Jason would say, that's just plain bad theology. But I do believe that God takes these sorts of things and turns them into good. I truly believe He gave Camille to us as a perfect gift, and that she will give more blessing than anything else we can imagine.

All that to say, this does not mean that I will not keep praying for a miracle for Camille. I also know that God works miracles everyday, and He can work one for Camille. So I will continue to pray everyday that she is okay--that she is affected by this as little as possible--that one day, when she is graduating from Med School or Law School, we can all look back on this in disbelief that it actually happened. I ask that you continue to pray for that miracle too. I also ask that you pray that if that miracle does not occur, and the worst does, that we (Jason, Henry, me, my mom and dad, Danny) are okay. That has been a little prayer that I have been repeating over and over again in my head since this all started: "God, please, please, please let Camille be okay, and if she is not, then let us be okay". Simple, but from the heart.

My promise to you is that I will use this blog to tell Camille's story--to update you (hopefully daily or every other day) on how she's doing, on how we're doing, and most importantly, how you can pray specifically for her and for us. During one of the many times I was driving to Temple to see Camille while she was in the NICU, I was praying, as I usually did on those drives. In that prayer, I told God that if He worked a miracle in Camille's life, I promised that we would tell her story and tell of His miracle to everyone we met. After thinking about that a while, I realized that should not be the end of my prayer. I then prayed that if God could not work this miracle that I so desperately wanted, then I would still tell Camille's story because whatever happens, I know from the depths of my heart that Camille will bless us and bless others, and that either way, her story as a blessing from God needs to be told.