Topping Twins

Topping Twins

Monday, August 25, 2014

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!

Nick, Ashley and Kaylee

Friday, August 8, 2014

We are always more afraid than we wish to be, but we can always be braver than we expect.

It's hard to believe that 2 more weeks have passed by. It's crazy to think that in less than 8 weeks, we will be opening another chapter of this book and continuing our story with our children. I feel like we blinked and it's August!

Yesterday, we met with Dr. Lynch, my OBGYN. No new news, just checked for growth progress and heart rates. Both the boys' heart rates were great-- about 8 beats apart from one another. I'm measuring 34 weeks (I'm 30 weeks tomorrow). We talked to Dr. Lynch about our upcoming appointment at Children's Mercy. Dr. Lynch assured us that we weren't these crazy parents just hanging on to every ounce of hope. He says that at the end of the day, getting a 2nd opinion is great. Because, at this point, there is still this big question mark with Peyton. From the outside, this pregnancy has been pretty much by the book. But when you start to look inside and knowing that Peyton has no fluid, it's hard to understand how he can possibly still be growing, moving and do the same things that Preston is doing. Dr. Lynch explained that if we settle on a plan with Children's Mercy and decide to deliver there, we will not have him as our doctor because CM is in MO. UGH. But, at the end of the day, when the boys are born, if there is a chance for Peyton and we deliver at Shawnee Mission, it is guaranteed that not only will I be separated from Peyton, but so will Preston. That is just not something that we want to have happen.

Today, we met with Dr. Wickstrom, my specialist. Again, no new news. The boys are growing like crazy. Preston is measuring on track to the day, and weighing 3 lbs. 2 oz. Peyton is measuring a few weeks behind and weighing 4 lbs. 7 oz. Of course, we have to accommodate the mass in his stomach-- we're guessing that there is a 29% discrepancy. So that would make Peyton around 3 lbs without the mass. Poor baby boy. To put things into perspective, I'm essentially 30 weeks pregnant and have approx. 6 lbs. 2 oz of "baby" in me. At 40 weeks, 2 days pregnant with Kaylee, she was born at 6 lbs. 8.2 oz. No wonder I feel so big!!

Preston is still breach, but Peyton is head down. These boys are active active active! The girl doing our sonogram was definitely feeling every move, kick and turn from them today! (Side note-- it is SUCH a small world. Our sonographer happens to be from Holton and her mom and my aunt Kathy are good friends and used to work together! You just never know who you know. :)) Dr. Wickstrom says that everything is looking good. I'm not having any contractions, no Braxton Hicks, no nothing, so she feels very confident that I will make it to the date we have tentatively selected. October 3rd. :) I will be 37 weeks 6 days at that point. And, it's my mom's birthday. :) It will be a very special day. We will wait to set the date in stone until after we have met with the team at Children's Mercy. Dr. Wickstrom is anxious to see what the team at CM has to say, as this pregnancy is nothing like anything she has seen before. There is no sign that any of Peyton's organs are failing, his heart is strong, and he is active. He is definitely a fighter.

We will head to Children's Mercy Fetal Health Center August 20th. A little less than 2 weeks away. Although, we would have loved to have gone in sooner, we understand how difficult it is to get in front of the entire team. While we are there, we will meet with a Urologist, the Genetics doctor, the Neonatologist, and several other people to determine the "birth plan" for our boys. They will be doing an in-depth sonogram to see if they can find any fluid around Peyton and then we will hopefully have some answers. From there, we will make the decision to either deliver at Children's Mercy or Shawnee Mission.

We are definitely ready to get a plan in place for our little guys. We aren't giving up hope and we are praying constantly. Last night, I had my first dream about our little guys. One looked just like Nick and the other one looked a lot like me. They were about 9 months old and crawling around and playing. I can't help but think God was sending me a sign.

Again, thank you for all of the prayers and thoughts of our family. To everyone that stops and tells our family how much you are praying for us, thank you. It really means the world and gives us strength and courage every day! We couldn't do it without your support. 

Nick, Ashley and Kaylee