One month ago today, we flew home from China. As cliche' as it may sound, I can't believe it's been a whole month. So much has happened in this past month, so I figured I'd catch you up on some of it. I guess I'll begin with a synopsis of the medical conditions that Raina is facing.Raina was born with a defect that is called congenital anal atresia (sometimes termed imperforate anus). During her fetal development, her colon failed to fully descend and connect to the rectum. As a result, she was given a temporary colostomy in her upper abdomen probably within a day or so of her birth. This was done so that an exit could be established for waste. The second stage of the process would be to create an anus (anoplasty), and correctly build her lower intestine to the outside of her body. After healing, the colostomy could then be reversed. None of these subsequent surgeries took place, and she was found abandoned just before her first birthday. Within the orphanage setting, they were not equipped with the resources to help her further. So she still has her colostomy which we care for on a daily basis. Shortly after coming home, a battery of tests were conducted on her (which you can read about in my previous post). The conclusion of some of these test results threw us all for a loop, as we discovered that Raina has quite a bit more wrong on the inside than we were aware of. She was born with a minor heart defect (VSD), which seems (at least for the time being) to be functional... meaning, they would simply like to monitor her every six months to see if any changes take place in her heart that would require something further (like a surgical repair). This was a small victory, and one in which we thank God for. In a total shocker, it was determined that Raina has only one kidney. This information became of extreme importance to us because of the fact that she was originally diagnosed as having a fistula (connection) between her intestine and her bladder. With the possibility of infection and potential damage to her renal system through this fistula, her one kidney must be protected at all costs. Thankfully, the urinalysis has shown that her kidney and her bladder are normal, with no signs of damage at this point. This was again, another bit of great news... it seems that God has protected her precious kidney thus far. We are certainly "hyper-aware" of what we see in her diaper, and we have had a few scares. So, needless to say, we are anxious to have the experts at Cincinnati Children's look into this further. The next thing we learned has to do with Raina's skeletal design. She was born without the lower 3 segments of her sacrum and her coccyx (the bottom of the spinal column and tailbone). This is evident when you look at her body structure. This could become a critical component of her future in many ways. The spinal cord runs the length of the spinal column, with the bottom most part serving the nerves for bladder and bowel control. At this point, it is undetermined how much of these nerve endings are in place for Raina. From an orthopedics standpoint, she may also have future issues with the development of her hips and pelvis as she grows. We were not able to get a very clear analysis of her reproductive system, so there are many question marks surrounding that as well. As the pieces of this puzzle began to fall into place, it became more abundantly clear that Raina has the signs of what is called VACTERL association. In a nutshell, VACTERL is an acronym, not a disease or a syndrome. It is used to describe the types of anomalies (physical birth defects) children may have when they are born. A child with three or more of these specific anomalies in any combination may be recognized as fitting the VACTERL Association. The specific needs of each child who has VACTERL vary from child to child, as well as the severity of the anomalies. Examples of the anomalies that may occur are:
(V) - Vertebrae problems - abnormally formed vertebrae, tethered spinal cord, extra ribs, missing ribs and tailbone, etc.
(A) - Anal anomalies/rectal problems - no anal opening.
(C) - Cardiac problems - minor to massive heart problems.
(T) - Trachea (windpipe) - improper connections between trachea and esophagus.
(E) - Esophagus - part of the esophagus connecting the mouth and stomach is missing.
(R) - Renal (kidney) - abnormal kidney(s).
(L) - Limb - various hand, feet and leg problems, missing bone structures are common.
Excerpt taken from vacterlnetwork.org.
Raina has the V, A, C, and R of the acronym. After shedding our fair share of tears regarding her situation, we have settled on the realization that although this has proven a huge surprise to us, none of this has been unknown to God. He has been aware of her needs all along, and was just waiting to place Raina into our family. We are overjoyed at the fact that this incredible little girl is a part of us now. In a very short time, the Lord has given us renewed perspective. Now, that's not to say, that along with the joy, we will not experience the darkness that is to come also. We are no different than any other family that has a child with special needs. It is a roller coaster that has hills, peaks, dips, turns, spins, loops, corkscrews, and dark tunnels. Yes, it's true... we are not the same family that we were before... but we are much better now that Raina's here. With all the challenges that our futures hold together, we must remain convinced that He will never leave us or forsake us... that He is faithful... that He knows what He is doing... and that He will be glorified through our circumstances. I'm sure that there will be days when it won't be nearly as easy for me to type those words. But He is enough... He HAS to be enough. Our friend, Carol Shrader, (who exemplifies this truth beautifully) has become something of a hero in our eyes - a true inspiration of character and strength. God's blessings are hugely evident in her family's life, and, although it may be from a far away distance, we are thankful for her humble influence on our lives.
Other than that, we have been enjoying getting to know Raina. She is a total delight most of the time. She has begun to settle into somewhat of a decent sleeping pattern. She eats almost everything we give to her. She has started to say some English words (mama, bye-bye, bubbles, banana, baby, eyes, nose, toes, blocks, shoes - just to name a few) and her laugh is downright infectious. She has become a hit everywhere we go - people just can't get enough of her beautiful face. And neither can we...
