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!