I normally don't find it hard for me to write on here. Usually, the words just come to me and I type away. I began blogging our twins' experience, not for attention, but rather for any families out there that may be facing the same challenges that we are facing. It's a tough world, and sometimes it makes it easier to know that someone else has been in your shoes before. Even if you never meet them, reading their story can sometimes help.
Today, the words just aren't there for us. Today, Nick and I are struggling. We're in pain and we're terrified of reaching the top of the hill we are climbing.
When we went back to the doctor last Friday, we were both ready to have more answers, and to begin understanding all of our options for when the boys are born. Another 4.5 hour appointment would leave us exhausted, numb and completely overwhelmed.
We began our appointment meeting with pre-admissions. In order to deliver at Children's Mercy, you have to "pass a test" to make sure that you are indeed healthy enough to deliver at the hospital. Because this is a children's hospital, they want to be sure that the moms will be healthy. The good news, I passed. :) Not that I was concerned, but hey, you just never know these days. :)
Next, we met with anesthesiology. They explained that with a c-section, I would expect to have a spinal and partial epidural. To think about this is no big deal to me. Actually it sounds like a breeze to get this done, especially since I won't be contracting when this happens.
Next, we met with the social worker. Basically, this person is there to help answer any questions we may have and provide us any outlets of support that we may need. Nick and I both just smiled during this visit, explaining that we were good. No questions. (The real questions would come later on during the day).
Next, we met with our sonographer. Here, she took measurements, did a bio physical profile on both boys and we got to see them moving around and their little hearts beating, which was great. Nothing new to report on the boys. They are both growing, super active and everything looks great!
After the sono--- we met with Dr. Bennett-- the head of periontology for Children's Mercy. Dr. Bennett was the doctor that Dr. Lynch had hoped we would get, so we were very excited that we were able to have him selected for us. Dr. Bennett is a great guy. He's very transparent about what's going on and is all about discussing our options together. We determined that we would continue to do bio physical profile testing on Preston, but that we would only be doing NST's (non-stress tests) on both Preston and Peyton. Basically-- the BPP would not report correctly because of the lack of fluid for Peyton-- so his score would always be skewed. Dr. Bennett was very sincere in everything he did and said. And he was brought to tears when we began to discuss Peyton's condition. At this point, Dr. Bennett agrees--- Peyton's obstruction to the bladder seems accurate. Dr. Bennett said that the proof will be in the pudding when Peyton is born and we really can't make decisions until we truly know what we are dealing with.
After meeting with Dr. Bennett, we went to meet for an integrated consult. During the consult, we met wtih Dr. Willig, head of Nephrology (kidneys), Dr. Carter, head of Neonatology, and a representative from the Palliative Care Team (PaCT). This consultation would deem to be the most revealing of what the future holds to date. Dr. Carter began talking to us immediately about Peyton and his lung development. He explained the same things that Dr. Killbride had in regards to lung development and options for birth. He explained that there is a lot that can be done and we will have to take every fork in the road, one at a time. This part of the conversation wasn't too bad, and honestly seemed manageable. They will indeed know pretty quickly what will need to be done in order to ensure Peyton's lungs are working correctly and will be able to provide us with guidance on to the if this, then this scenarios.
Next, Dr. Willig, the nephrologist spoke to us regarding Peyton's kidneys. Again, until Peyton is born, we really won't know the severity of the situation. However, at this point, they are referring to it as chronic kidney failure. Call us crazy, naive, ignorant... all of the above. We had NO idea what that actually meant. To us, Peyton would just get a transplant and be fine. What this actually means?? Peyton will need to be put on dialysis ASAP. He will be in the hospital, at a minimum of 4 months. He will need dialysis every single day until he is big enough for a transplant. He will not be big enough until approximately 2 years of age. He will be on 8+ pills/medicine a day for the rest of his life. The first transplant will do the best. Yes, that's right--- Peyton's kidney transplant will only last for so long. It could last anywhere from 2-10 years. He will not be able to live the same life as his brother. The doctors all explained that we could expect a life of living more IN the hospital than not, his entire life. The list of risk and complications is literally a mile long.
You probably could have knocked me over with a feather at that point. We just really didn't understand the quality of life that Peyton would face. AND on the other side of this, there is the quality of life for Kaylee and Preston too. I'd be lying if I said this was easy and we'll take all of this information in stride too. It actually just plain sucks. I never thought I would question God and his decisions. But I have definitely wondered why he chose us to be Peyton's parents lately. I don't know that I'm strong enough for all of this. There are SO many tough decisions ahead of us and at the end of the day, sometimes you just want to throw your hands up and give up. But then again, that's not who we are. We would never just give up. So, instead, we continue to live. We continue to smile and laugh and have fun. When all is said and done, we will have three beautiful children that we will never stop loving. It is truly in God's hands to determine the path that we're going.
Our heads have been spinning since we left Children's Mercy on Friday. Nick and I have an incredibly difficult road ahead when it comes to decisions. At this point, the anticipation of reaching the top of this hill we have been climbing for nearly 5 months is probably the hardest part. When confronted with reality, we will make the best decisions for us as a family. At this point, we have no idea what those will be. We are confident in the staff at Children's Mercy and we are confident in each other that we will do what is best for our children. No matter what.
In the coming weeks, please continue to pray for healthy lungs and kidneys. Miracles happen every day.
