My visit to Children's Hospital Colorado

********** Will show a new paragraph this way. I don't know why this formatting can't handle paragraphs, but I'm still trying to figure it out. Until then, that will have to do. ********** As many of you know, I went to Denver this past Friday and Saturday to check out the hospital in Aurora that we will be having Alexis at and where she will be having her first surgery done. I'm so grateful that my mom, my aunt Laura (doctor) and my aunt Leslie (lives in Boulder) were able to come with me. They were able to look at things from a little different perspective and support me in my appointments. Laura also brought the medical perspective to the situation, which gave me more confidence. It was a long, tiring day on Friday, centered around Alexis, and I'm finally glad to have some more concrete answers. ********** The first appointment was the fetal echo and a meeting with the cardiologist. The ultrasound tech was wonderful during the echo and the cardiologist was fantastic. He explained how a normal heart works and how a HLHS heart works. He said the defect was most likely there at 8 weeks gestation, and the defect made it very hard for the left side of her heart to grow because it wasn't getting adequate blood flow. He made it very clear that I didn't do anything to cause this abnormality, and it was most likely not genetic, either. I think it is just simply God's plan for Alexis to give her an incredible story to share about God's love and healing power. ********** The cardiologist explained the different treatment options to us (palliative, meaning just doing the best you can with what you have, and transplant) and the risks and benefits associated with each option. They have a 90% survival rate for the 1st surgery, although the period between the first and second surgery is still very critical. The second surgery has 95% success and the third has 97%. He explained that they used to do many more transplants than surgery, but have decided the 3 stage treatment has better long-term success (50% of babies who get a transplant either die or need yet another heart). There is not a ton of long-term data for the palliative surgery, because they have just started tracking these kids within the last few years, but the short-term data seems pretty encouraging. He also said they are all hoping that in 20 or so years, some new generation doctor is going to develop a phenomenal was to treat these kids through something they haven't even thought of yet. ********** He spent some time talking to me about how hard this is going to be on our family. He said it brings out whatever is already strong in our marriage, good or bad. He said he has seen this situation tear families completely apart and pull other families even closer together. He also said that parents are encouraged to be part of the medical team, including being part of the daily rounds discussion about their child, and that the doctors and nurses trust that we know our child better than anyone else. There are no limits to visiting hours and anyone can come visit. He encouraged me to breastfeed before her surgery and to pump after. 1/3 of babies go home with a g-tube, so we will have to mentally prepare for that as well.********** Next was our appointment with the chief cardiac surgeon at the hospital. He talked us through many similar things. He explained that there are two options for part of the surgery that will take place and told us which one he thought would be best for Alexis, considering her anatomy. The surgery will take 4-5 hours, if everything goes well, and will happen at 3-4 days old. She will be cooled down so her body slows down a bit, then will be put on a heart and lung bypass machine. Of course, this is one of our fears but we trust the surgeon and his team to do their very best work on her. ********** After that, my contact at the hospital, Carey, took us on a tour of all the relevant places. We went to the CICU (Cardiac Intensive Care Unit), the NICU, labor and delivery, and walked passed the operating room. It was very hard seeing all of the sick kids, but it was kind of a reality check. ********** Finally, I had an OB appointment with a complete anatomy ultrasound. They said she looks great, other than the obvious heart problem. She is still measuring a week ahead and I'm scheduled for my induction for the evening of September 8 (Sunday). They are hoping she is born the morning of September 9. It's very weird knowing she won't be born any later than that date! If I go into labor before that, I will have her at the University Hospital across the street from the Children's hospital, then they will immediately transfer her over there. I'm praying that doesn't happen because I want to be with her as much as possible! ********** All the ladies who came with me were very impressed with the hospital and all the staff we met. Everyone was very straight forward with us and they didn't try to hide anything from us. They were all very personable, too! Apparently that is very rare in a big hospital like that, according to my aunt. I'm so glad I took the time to go visit because I got a lot of great information. ********** Once we were done at the hospital we went to check out the Ronald McDonald House. We got a tour, saw the rooms, and got all the information relevant to the house and to our situation. It felt a lot like a hotel but there was a bunch of common space and places for kids to play. They ask for a donation of $20 per night, but nobody is turned away for financial reasons. There is no limit on how long we can stay either. That was good news because we should expect to be in Denver for at least 4-6 weeks for Alexis to recover, then another week with her discharged to make sure she does well outside of the hospital. It is awesome to have that housing option available for us. We also drove by a couple of RV parks where we can possibly park my parents' RV so that our visitors have somewhere free they can stay.********** I came home yesterday and it has taken a while to formulate all of my thoughts about what I saw and learned. It did NOT feel like a hospital, which is good, and everyone was so welcoming. I can't say that I am looking forward to having to go back for Alexis's birth, surgery, and recovery, but I am glad that we have the option to go to this particular hospital. Continued prayers would be much appreciated and I am very anxious to see how God uses all of this for His glory!