When we first heard the news that Reid had Congenital Diaphragmatic Hernia (CDH), I did what any other frantic mom-to-be would do. I scoured the internet and read every medical paper, blog, and message board I could find. Although many people warn you not to look to the internet for answers, I found a sense of comfort in reading about other families' triumphs as well as their struggles related to the condition. The overpowering theme that ran through all my blog reading was that no two CDH journeys are the same. Some babies that had excellent chances of surviving didn't; and some, like Reid, who had very grim prognoses, survived. After these kids overcame the initial obstacles of CDH, I read about a whole host of long-term issues associated with the condition that may or may not occur. The hardest part of Reid's journey is not knowing what issues may arise and when they will rear their ugly head. Before I get into the frustrating news we recently received, let me bring you all up to date on the progress that Reid has made over the past year (always start with a positive, right?!).
Over the past year, Reid has made tremendous progress, both developmentally and medically. He is such a determined, yet easy going little guy and has worked so hard to achieve every milestone that he has hit. His therapists enjoy working with him because he puts forth effort in every session and moves on from frustration pretty quickly. Medically, in November, 2012, Reid had eye surgery, a gastrostomy tube placed (no longer has the feeding tube from his nose to his stomach, it's now directly in his stomach), and a nissen fundoplication performed (his surgeon tied the upper part of his stomach around his esophagus to combat his severe reflux). He recovered from surgery quite quickly and has thrived with the g-tube, gaining consistent weight. This past spring, with the help of his dietitian, we switched him from a formula based diet to a blenderized diet. We use a heavy duty blender to mix real food and nutrients that he would be receiving if he were eating orally- this switch has improved his coloring, weight gain, reflux symptoms, hair and nail growth, and overall activity level (he never stops moving!). Reid also has been slowly weaned from the supplemental oxygen he receives and currently is on a very small amount for 8 hours overnight. It's a slow process, but we anticipate he will be oxygen free in the upcoming months. Additionally, a few of his meds have changed, and we just successfully weaned him off of the diuretic that he had been on since his time in the NICU. Most importantly, we, as a family, are finally beginning to feel like we have established a sense of normalcy. My favorite parts of this past year have been having play dates (and not worrying about having to sanitize everything); going to story time, gym class, music class, and mommy and me class; playing at the beach with his cousin and friends (he is such a happy boy at the beach; aren't we all?!); celebrating his friends' birthdays; celebrating holidays as a family; and just watching him become a toddler and enjoying all of the small pleasures of life.
Two weeks ago, we had a marathon of follow-up appointments at CHOP with the majority of his specialists. Although we were pleased with some of the results, we could have done without the scare that he may have reherniated (some of his specialists thought they heard bowel sounds in his chest; however, his surgeon reviewed his x-ray and believes his patch is still intact and his bowels are just sitting closely under it). After moving on from this news, we were hit with a real concern regarding the progression of Reid's scoliosis. His orthopedic surgeon measures the progression of his spinal curve by comparing previous x-rays to his current x-ray, and Reid progressed from 38 degrees in March, 2013, to 64 degrees in October, 2013. This news was devastating...his doctor said if he continues to grow the way he is growing, his lung will be severely compromised. Therefore, action needs to be taken, like yesterday! Because Reid is so young, he isn't a candidate for the spinal fusion surgery, because if the rods fuse together, growth will halt and there is no going back. So, the alternative is VEPTR (vertical expandable prosthetic titanium rod) surgery. Essentially, Reid will have an initial surgery to implant the titanium device. Then he will need subsequent surgeries every 6 months to make expansions. This is obviously not the news we wanted to receive, but we knew we had been delaying the inevitable...we just hoped we could buy another few years before starting this set of surgeries. Reid's orthopedic surgeon wants to move quickly to delay any further progression, so the initial surgery has been scheduled for December 12th. We've been advised that it will be at least a 5-day stay at CHOP, but could potentially be longer due to the complexity of Reid's health issues. My hope is that we are home by Christmas...if not, I'm sure we'll find a fun way to celebrate in the hospital. Just when we start to think we can breathe, the CDH journey throws us a curve and continues to keep us on our toes.
I'll leave you with a few pics from this past year...we've sure taken our share (Reid is so sick of the camera)! We feel like we exhausted the prayers of our friends and families during those first few rough months after Reid's birth, but if you remember, please say a prayer or send a positive thought on December 12th...I know I could use the strength:)
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