Monday, January 28, 2013

Is she better?

      Many people ask us, "is Caroline better?" If you've ever seen Caroline, you would probably agree that her bright smile and happy blue eyes hide any evidence that she has a lung disease. Caroline loves to play, yell (happily) at her brother, eat anything she can get her hands on, refuse her nap times, and now crawl forwards and back. To look at her alone, she is growing beautifully (which is stunning for the doctors to see!) and seems to be perfectly normal.  If you were to sit her with another child her age, you would probably notice she breathes quite a bit faster than the other child and her chest caves in when she breathes. Its mostly when compared with someone else that anyone can ever notice she's different.
      To answer the question, "is she better?" Well, no. Caroline is better today than she was at 2 1/2 months old because we know why she breathes like she does and we aren't in the hospital anymore!  She's better than she was at 4 1/2 months old when she had her lung biopsy because she's not recovering from surgery and she's better than she was in December when she fought what seemed to be the world's longest lasting cold. As far as her respiratory problems due to the disease she has, no, she is not better.
      We knew Caroline wouldn't be "better" at this point, so we aren't surprised, sad, or stressed over it. From what researchers have discovered, most children out grow the need for oxygen supplementation by the time they are five years old.  So, for Caroline to still be on oxygen and to struggle when fighting any other illness at nine months old, this is all as expected.  Our pulmonologist was hoping she would make a little quicker progress, but at six months old, we were told her oxygen requirement will be a long-term necessity.  I did not ask "how long is long-term?" because I know that no doctor can make that determination at this point.
     Recently I, Brittany, have joined a facebook group with families of children with NeHI (the disease Caroline has) and other childhood interstitial lung diseases.  From this group, I have discovered a few families with multiple children affected by a childhood interstitial lung disease (the type of disease that NeHI is) and some children will wean off oxygen for a few years and then require it again. These types of diseases are so newly characterized and known by researchers and physicians, that little is really known for certain. We don't know if it is genetic or environmental or both.  We don't know why children "outgrow" the oxygen requirement. We also don't know the long term implications are even though at this time it seems as though there are little to none. Caroline will have another sleep study at 15 months old to look at her oxygen requirement and she will also have a pulmonary function test to look at the strength of her lungs (lungs can tire out after working so hard for so long to breathe) and echo-cardiogram to see if her heart has been affected any (low oxygen can cause enlarged heart) sometime this spring. 
     Caroline is a sweet joy to our family and we cannot imagine our life to be any different than it is now.  Yes, its a little complicated lugging around oxygen tanks, taking her in for monthly very painful RSV  vaccines, keeping her cannula in at night, remembering all her medications, and doing our best to quarantine her so she doesn't get sick. The phrase, "she has very little reserve" is pretty scary and we do anticipate her being hospitalized again in the near future for another cold, virus, or infection. We've learned to really cherish the times of wellness and being together. We are so thankful for the time God has given us over the past month of doing just this!
    We continue to appreciate your prayers for our family as we know your prayers have truly sustained us over the past year.  Caroline will be one soon and we look forward to celebrating her amazing life and all God has taught us through her already! God is so good. He is abundantly gracious to our family and we are grateful!


Friday, January 18, 2013

God is Powerful, A Look at 2012

As we look back at 2012, we refuse to deny God's unmistakable power displayed in every last second of every day.

 In late summer of 2011, we found out we would have a second child and we were elated.  We immediately began calling this child, baby Caroline. I received progesterone shots to prevent pre-term labor beginning at 16 weeks and we were all surprised when the contractions began at nineteen weeks. I refused bed rest this time (I was on bed rest for 10 weeks with Jett because of persistent pre-term labor) as to not miss out on my last weeks with Jett as our only child. My doctor never explicitly told me be on full bed rest, so I took heed to his prescription for moderate activity instead. Again, because of the power of God, I carried Caroline to full term and gave birth to an incredible healthy baby girl last spring.

When a child is born and you look into his or her eyes for the first time, let there be no mistake, the power of God is at work. I have never felt so close to God and experienced His power so tangibly as I did when holding Jett and Caroline for the first times. I have heard this said of people when they hold their adopted child for the first time as well. Let us not be so ignorant to think we are the creators of life and these tiny gifts are simple replications of our (or someone else's) DNA. No, God alone is the Creator. John 1:3, "Through Him all things were made; without Him nothing was made that has been made." God is powerful.

Speed up 2 1/2 months to July 2012. When we were told to take Caroline to the ER the first time due to her rapid breathing and chest retractions, I was laden with guilt. My thoughts as we got in the car: "Why did I not notice these symptoms before? Is this because I hadn't fully bonded with this baby? Surely this is my fault."

Because of the power of God, He alone quieted my soul in only a way He can. His grace was sufficient for me, His power was made perfect in my weakness (2 Cor. 12:9). In that moment, my Spirit uttered the words of Job, "the Lord gives and the Lord takes away, may the name of the Lord be praised." (Job 1:20). Later that night, when I looked at Caroline and felt like she was slipping away, only the almost tangible power of God held me together and it was that same power that continued to hold me together through the rest of 2012. God is powerful.

The young lady we met (because of the power of God as referenced in a previous post) who had the kidney tumors - I heard from her weeks after we had met.  Those tumors, they turned out to be boils from an unknown infection. Heavy antibiotics were all she needed.  By the power of God, she was healed. Let us not be so foolish to think that at the invention of modern medicine, God was finally put at rest and no longer needed to be in the healing business. No, He is omnipotent and not one thing slips through His hands by chance. He often times uses modern medicine but has not quit the healing business. God is powerful.

Recently Jay's uncle and a dear friend of the family passed away. These times were times of sincere grief, sorrow, and sadness. Jett told us, "you don't have to be sad because Jesus is Alive." Man, that kid gets it. Because of the power of God, these two precious people were met by our savior upon their earthly death. They now "know Christ and the power of His resurrection" (Phil. 3:10). With Him, they experience no pain and no sorrow. "Oh death, where is your victory? Oh where is your sting?" (1 Corinthians 15:55). In death, God is powerful.

On December 25, 2012 Jennifer and Chris Sands baptized Jennifer's french tutor in Burkina Faso. God is powerful.

On August 27, 2012, Shep Greenway was born even though doctors told mom and dad pregnancy was not possible without medical intervention (with no intervention needed). God is powerful.

In May of 2012, it was made law that a woman must have a sonogram and full fetal description before an abortion can be performed. It was a step. God is powerful. (And in 2013, Texas gave up federal funding for women's health care in order to stipulate that a woman receiving government medical aid cannot receive care from a provider who provides abortions. This might just put several abortion clinics out of business...but that's for 2013). God is powerful.

A family burdened with financial and relational turmoil was set free in 2012 and was able to experience a Christmas like no other. God is powerful.

Our Caroline stopped sleeping through the night in November and yet I have energy. God multiplies my rest undoubtedly and He is to be praised. This is no little thing, I am telling you, God is powerful. 

I say all this so we can remind ourselves of God's great power despite who we are, what we do, and what we don't do. I know for certain God showed His power in your life and all across the world in too many ways to ever list just in this past year. I encourage you to look for evidence of God's great power in your life over the course of 2012. Did you come to know Jesus Christ this year or do you know someone who did? "For the message of the cross is foolishness to those who are perishing, but to us who are being saved it is the power of God" (1 Cor. 1:18). Did you feel the love of Christ this year? Because, Paul prayed that "we may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ" (Eph. 3:18). Did you speak the word of God or serve in His strength this year? Because if so, "to Him be the glory and power for ever and ever" (1 Peter 4:11).

God is powerful - period. It is who He is and He is just as powerful today as He ever was - period. This may be considered too bold but I will add, God even displays His power today just as much as He ever has. Oh and - His power isn't dependent on you or me. Praise the Lord and all Glory and Power be to Him for "if we are faithless, He will remain faithful, for He cannot disown Himself" 2 Timothy 2:13  "Alleluia! For the Lord God Omnipotent reigns!" (Rev. 19:6)