One Year Ago

One year ago tomorrow, Drew came home from the NICU at Cincinnati Children's where he had spent the entire first month of his life. I hadn't been back to the NICU since we'd left on that sunny, warm day. I remember that we had taken Lily with us, mostly because I was still nursing her and you never can tell just how long discharge will take, but I think also because we wanted the two of them to be together. We drove home in separate cars because we had 2 at the hospital, and Drew came with me in the van. If not #1, it was definitely in the top 5 for best days of my life.

I'd often thought about stopping back in to the NICU to say hello to many of the familiar faces and wonderful nurses and doctors that took such good care of Drew and of us for that horrible month, but everytime we were at the hospital there were a dozen other things happening and I just never got the chance to. Last night, I went back to the NICU. Let me explain...

A few months ago, I saw on the Children's Facebook page that they were looking for volunteers to be a part of a program called Parents TOUCH, where parents who had previously spent time in the NICU volunteer to visit families currently in the NICU to let them know that you were once in their situation and that they were going to be okay, no matter their outcome. I'd been looking for something like this to get involved in - giving back a little - and this looked like the perfect thing for me. I contacted the woman in charge, and a few weeks later we met for coffee and there was an instant connection.

Last night was the orientation for the program. I had been at the hospital all day for the Thomas Boat Symposium on Cystic Fibrosis (i'll get to that shortly) and the orientation for Parents TOUCH was at 5pm. The woman in charge met the 3 people who had been chosen to be a part of this program, myself included, and up we went to B4. I felt like I hadn't been there in ages. The lobby of the NICU had been redone and looked so warm and clean and welcoming. I hardly remembered what it use to look like, as my time spent on that floor was mostly a blur due to emotions and exhaustion.

We started the training by introducing ourselves to the current volunteers (there are only 4) and the nurse assisting with the program, and by sharing our story. Almost everyone got choked up when it was their turn to talk. I don't know if it was just being back in that place or what, but I hadn't been asked to recall my time in the NICU, well, ever, and it just wasn't the most fun memory I'd had all day. And that was the point of the program almost exactly. Parents currently in the NICU are in the midst of those very emotions, and our job, as volunteers, is just to offer them support. Some may not want to talk to us while others might be so grateful to have someone who knows exactly what they are going through.

Then we started our tour. We'd all been there. We'd all seen these rooms and these hallways before. But having been removed from the situation for just about 1 year exactly, I guess I had forgotten what it really felt like to walk them. The babies are so so tiny, all hooked up to monitors and machines, while worried parents and grandparents rock them or pace the halls hoping for good news from whoever will give it to them. It sucked!

We continued our tour and before I knew it we had gone through the doors into the B-pod - the private rooms. Right smack in front of my face was B6, our room. It was empty, but my heart just sank the moment I saw it. So much happened in that one small space! Drew was clinging to life with a ventilator breathing for him after 2 surgeries when he was less than a week old. Doctors in masks and gowns showed up day after day, before the diagnosis causing us to wonder why they were treating our son like something contagious that they couldn't touch without protective gear and then after the diagnosis glad that they were wearing what they were wearing so that no one gave him anything. The dreaded official diagnosis happened in that room. We met with dozens of doctors and nurses and social workers, physical & occupational therapists, dieticians, chaplins who performed a baptism with Similac Sterile Water, Child Life specialists, financial specialists, you name it. So much happened in that very room which was sitting empty in front of me and it brought back WAY more emotion than I had expected.

When we finished our tour, I asked the 1 volunteer if she ever got emotional when shes talking to these other parents, because part of the deal is that we're sharing with them as well. She has a daughter who is 25 years old, meaning that she is 25 years removed from the NICU, and she said she gets emotional almost every time. I told the lady in charge that I just didn't know if I could do this! I don't want to emotionally throw up on these poor parents who are in the midst of quite possibly the worst time of their lives. I'm there for them! And the current volunteer told me that in a crazy way, its healing for both of us. She said that when parents can see that they are allowed to be emotional, that they are allowed to be scared and angry and to ask or demand answers, that they will open up to you like they would to a nurse or a social worker or someone more official. You're not judging them, you're just there to listen. And at the end of your shift, you decompress, leave as much of it as you can at the hospital, and go back home and enjoy your life. You're simply there to make life better for a scared mom or dad for just a short time.

I want to do it, i'm just not sure if I'm ready to do it yet. Not all parents are as fortunate as us. Some of those parents won't get to take their baby home. Its the sad and scary reality of the NICU. Its a terrible terrible place to be, and to have someone whose been there, who knows what its like share their experience with you, it has to be helpful. And I'm not the only one having these feelings of concern about the program. The other two girls were equally as emotional and concerned about being able to handle the stress of the job. The people running the program told us that all we can do is try, and if after 1 time we decide its just not for us they will totally understand and try to help us find a better fit. Its just twice a month. I'm not sure when it starts but I'll give it a whirl and see how it goes. I hope it goes well.

Now, to take things in a totally different direction, yesterday I had the opportunity and privilege to attend the Thomas Boat Research Symposium on Cystic Fibrosis at Cincinnati Children's Hospital. I wrote about it before here, but yesterday was the big event. And below is a picture of who I believe will be the two doctors responsible for the CURE for CF, Dr. Thomas Boat (right) and Dr. J.P. Clancy (left).

So let me tell you who these guys are. Dr. Boat is probably the biggest and most influential CF doctor and researcher over the past 50 years. He has held the chair position at a number of Children's hospitals and is a world renowned doctor and researcher. He is the immediate past director of the Childrens Hospital Research Foundation and past Chairman of the University of Cincinnati College of Medicine's Department of Pediatrics. You can read all about him by clicking HERE (its totally worth it!)

Because Dr. Boat was so influential to both Cincinnati Children's and to the world of CF, a chair was created in his honor, the Thomas Boat Chair, and Dr. Clancy is the first person ever to receive this appointment and honor. The Powerpoint slide that came up on the screen said that the purpose of the Thomas Boat Chair was "to make a difference and change the world", and I do believe that Dr. Clancy will do that in his role as Thomas Boat Chair.

Dr. Clancy is probably about 20 years younger than Dr. Boat if I had to guess , but equally as impressive in his accomplishments. He recently moved from his position at the University of Alabama to Cinicinnati Children's to continue his research and search for the cure of Cystic Fibrosis.

Dr. Boat & Dr. Clancy both presented on different topic surrounding Cystic Fibrosis, as did about 8 other top doctors and CF researchers from around the country. Robert Beall, the President and CEO of the Cystic Fibrosis Foundation was also there to tell folks about the great work that the CFF is doing to support the efforts of all of these great researchers and doctors. There was so much fascinating information about how far we've come over the past even just 10 years. And the message of hope was just astounding. I learned that 3% of the gross revenue from Cincinnati Children's Hospital every year goes directly to CF research. Thats HUGE! That's how confident people are that a cure will be found, and soon. Check this out - HERE is a list of breakthrough discoveries that have taken place at Cincinnati Children's Hospital. Hopefully we can add "Cure for CF FOUND" to that list soon.

There were a few big-wig researchers at the event that mostly talked over my head, but when I asked our doctor to clarify what I had understood, she admitted that he was talking a little over her head as well. Here's two things I found terribly interesting. I might botch this a little, so don't hold me to this exactly. First, a man named Dr. Christopher Karp, spent some time discussing the CF testing that has been done and is being done on mice and pigs. Mice, for a long time, were bread to have CF so that appropriate testing could take place. However, there was a great struggle to mimic the disease and researchers pinned it to just different anatomy in humans and mice. However, recently, someone (and I'm not sure if it was Dr. Karp or someone else) thought that maybe it had something to do with temperature. So humans, for example, naturally hold ourselves at what is called a thermoneutral temperature. Basically, when we are sitting on the couch expending zero energy, our body and systems slow and keep us at comfortable temperature while using as little energy possible to maintain that temperature. The mice in their cages in the labs were being kept at a humans thermoneutral temperature. But apparently they were freezing, because the thermoneutral temperature for mice was 30 degrees warmer than that of humans! Who knew! So when researchers looked back, they thought that perhaps the real reason that mice with CF weren't developing lung disease like people with CF was because the cold temperatures they were living under was preventing the production of something (I don't remember what, mylo something maybe) which was decreasing the inflammation seen in CF lungs and preventing lung infections. Hmmmmm....

Dr. Karp went on to discuss the association between inflammation and infection in a "which came first, the chicken or the egg" type presentation. I asked Dr. Burns (Drew's doc) about this after the presentation and she said that a lot of the new research and thinking around CF is to treat the inflammation to prevent the infection vs. just the thick mucus causing the infections and the inflammation providing some extra difficulty in getting rid of it all. (I completely understand that I'm probably botching all of this, but its what I took way, and thats it).

Another presenter discussed a discovery that was made just 3 weeks ago about a treatment for inflammation that could be directly related to the eradication of pseudomonas and b.cepacia. Another doctor talked about the benchmarking that the FDA and NIH uses for approving drugs and the "disappointing results" of Denufosol in clinical trials. He said that the trials were done on folks with already "good" by CF standards FEV1 and that the goal of seeing x% improvement was unrealistic given that they were already in such a good place. Had the FDA looked at their trend over time using the same data, they would be able to have clearly identified an improvement over folks not on the drug, however now due to "disappointing results" which weren't exactly as disappointing as they were presented, many folks who could have benefited from this drug will never have the opportunity to. There is work toward understanding what benchmarks need to be put in place to ensure accurate and appropriate reporting of results going on right now and hopefully we will hear about some changes soon.

There was really so much discussed at this conference that theres no way I could go into all of it, especially with my low level of understand what it all means to me. All I know is that there was so much forward momentum and hope at this event that it refreshed my outlook. It might still be some years away before a cure is found. I do still hope its found soon enough for Drew, and I'm not naive to the reality that this awful disease truly is. I'll harp on it one last time because if you've gotten this far into this post then you're committed, it depends on US! It depends on our donations and our support to fund the research that will cure this. Can you please help with a small donation (or large if you want!). Click here, its that easy :)