Less than 6 weeks to go!

At the very most, we have 38 days until we meet our little guys. WOW! How time flies! I can hardly believe that it is almost September! To say we are excited, nervous, and anxious is an understatement. :)

Last week was the week that we had been anticipating for over a month. The day we visited Children's Mercy. Of course, as one would imagine, I didn't sleep the night before, trying to remember all the questions I had and typing, deleting and retyping them into my phone so my pregnancy brain wouldn't get the best of me. :) We started our trip downtown, walked into Children's Mercy and I was instantly overcome with emotion. This isn't necessarily a hospital where you see lots of healthy people. As we checked in with security, we discovered that Nick didn't have his wallet. And of course, you have to provide your DL in order to get in to the facility. Here I was worried about my pregnancy brain and forgot all about how bad Nick's has been. In a panic, I of course began to cry and I'm pretty sure everyone thought I was crazy. Needless to say, after a quick phone call to my contact there, they let Nick in. Whew! Nothing like starting our visit off with that!

The first person we met with was the Genetics team. This part of the meeting walked us through our family history. Basically, they are trying to determine if any of the things going on with Peyton are genetically related. The conversation basically went like this: Ashley, do you have any siblings? Yes--- I have a twin brother, a sister and another younger brother. Ashley, do you all have the same mommy and daddy? Yes. Do any of your siblings have children?.... this part actually got kind of comical-- as the questions continue on to ask how many siblings my parents have, etc. The lady was shocked to find that my dad's mom had had 2 sets of twins herself. Needless to say, after walking through our family medical history, it was determined that none of this is genetically related.

Next, we met with the sonogram team. A 2 hour sonogram would basically tell us nothing new. The boys weren't necessarily being the most cooperative that day though. They were both moving around like crazy and it was really hard to capture solid images. At one point, the sonographer asked me to turn on my right side so that she could get a better look. It wasn't until that moment did Nick get the full picture of how bad my darn sciatic nerve has been bothering me. As it literally took me about 5 minutes to get to my right side. Holy OW! Literally, the pain takes my breath away. But, nonetheless, I made it to my side and that helped her catch some of the images she wasn't able to get earlier. So the pain was worth it. :) When the sonogram was complete, the director of the sono team came in to tell us that Peyton had no fluid and that his kidneys looked small. Surprise surprise. This is what we've been seeing for weeks now.

Next, we met with the urologist. Unfortunately, Dr. Gatti didn't feel that there was much that he could do for Peyton. At least not right now. He explained that Peyton's bladder is actually 2 times the size of a normal adult bladder and it is actually causing his stomach to protrude outwards. Our poor little guy. :( He explained that at this point in the pregnancy, there really isn't anything he can do and we would have to wait and see what happens at birth in order to determine a plan. First and foremost, we have to determine how his lungs have developed, which will not be able to  be identified until birth.

Next, we met with the head of Neonatology, Dr. Kilbride. Dr. Kilbride explained that Peyton's chances for survival aren't great. BUT, there is a chance. Because Peyton is a twin, there is a possibility that he is absorbing some of Preston's fluid, which would allow his lungs to develop. There is also a possibility that there may be a small pocket of fluid that we just aren't seeing. Dr. Kilbride explained that it takes the tiniest amount of fluid to allow for lung development, so he wasn't giving up hope. Of course, he didn't want to get our hopes up. If we make it through the lung obstacle, we still have his kidneys and bladder to worry about. Depending on the findings, Peyton could be placed on dialysis as early as 6 days old. Dr. Kilbride explained that on the day of delivery, they would take Peyton immediately to an operating room adjacent to where I would deliver the boys (Nick would be able to walk between the 2 rooms) and they would assess Peyton. He explained that they would be able to tell within 30 minutes to 1 hour the situation. Basically, what would need to be done, if anything. There are extreme measures that can be taken, such as artificial lungs, etc., or it may be that a catheter is placed in Peyton's bladder and a steroid shot is done for lung development. They just won't know until they can actually meet him. A LOT of information to take in, and digest.

All of this taken into consideration, Dr. Kilbride strongly recommended that we deliver at Children's Mercy. That way, they are 100% prepared for Peyton. On the flip side of this, he did warn that they are used to caring for sick children, not necessarily healthy children. So for Preston, we will need to make sure we provide any specific instructions on his care if we have any.

The next day, we met with my OB, Dr. Lynch. Dr. Lynch 100% agreed that the best decision would be to deliver at Children's Mercy. He agreed that we should go ahead and proceed with transferring all of our care there so that we do not have to continually retell our story over and over and that the doctors there become familiar with us. Especially since we are looking at less than 6 weeks to go. Nick and I both felt SO much better after talking to Dr. Lynch about delivering at Children's Mercy, we just know it is the right decision. Dr. Lynch was also able to calm some of my fears about having a c-section. Because of course, I was freaking out about that too! :)

So, this week, we will begin meeting with the team at Children's Mercy on a weekly basis. Every week, we will have a sonogram completed and a non-stress test to determine if I am having any contractions and if they are placing any stress on the babies. We will meet with our new OBGYN and Periontologist and officially select a date for the c-section. (Preston is still breach so this is our only option.). We still need to meet with a nefrologist (kidney doctor) and we will also meet with the entire neonatology team to discuss every option possible for the care of Peyton and where our "stopping" point is. On one hand, we don't want to put Peyton through extreme measures, but on the other hand, we don't want to give up on him either. Sitting down with the team and determining our options up front will hopefully relieve some of the stress that will come on their birth day.

All in all, last week was exhausting. BUT, we did get some answers. We're hoping for more of a concrete plan after we head back to CM this week Friday. At the end of the day, we know that we will be in the best hands possible.

Thank you thank you thank you again for all of the prayers! Please continue to pray for healthy lungs and kidneys. I keep having dreams about both boys. And almost on a daily basis, I have visions of our life as a family of 5. Nick and I have joked several times that we are going to have to buy a new car in order to fit everyone when we go home from the hospital. :) That is definitely a problem we would LOVE to have!

Love,
Nick, Ashley and Kaylee