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!

It's coming together and a quick update on Levi

As many of you know, I will be headed to Denver in about a week and a half to check out the Children's Hospital out there. I'm looking forward to it because I finally got the schedule from the coordinator out there who has been setting up the tours and appointments for me. It looks like I will have a fetal echo (heart scan), meet the surgeon face-to-face and chat with him for a while, then have an appointment with a high risk OB to talk about the plan for induction/delivery. I'm very thankful that I will get to meet all of these people and have a much better idea of what will happen in August/September when all of these things actually take place. It is going to be very strange knowing Alexis's birthday though, and possibly having a say in when it is going to be. We also have to decide how to make a plan for Jason joining me in Denver. We haven't decided if he is going to come up when I have to be there (at 37 weeks), or if he will stay here and keep working for another couple of weeks until there is actually something going on. I will take Levi with me regardless, which means we will need another person there, like a grandparent or an aunt or someone, who can watch him while I have appointments and on the off chance I go into labor before the induction. Quick update on Levi: My little boy is growing up so fast! He is showing more and more personality every day and we are absolutely positive he is going to be the class clown once he gets into school. He loves performing to the crowd (once he gets warmed up) and he is very funny. He recently discovered that he loves playing in the water, be it the shower, bath, swimming pool, or sprinklers. He has also recently developed an interest in watching cartoons. It is nice to be able to sit him in front of the TV for a few minutes so I can make breakfast or get him to come inside when I need to take a short break, but his attention span is still not long enough to make it through a whole show. To be honest, I'm totally fine with that because I don't want him to watch as much TV as I did growing up. Both of my parents worked so I was very into the TV while they were at work. Hopefully, with me being home, I can keep him very busy! He is the least picky toddler I have ever met, which I am also very thankful for. He will try EVERY food put in front of him, and even if he doesn't like something he won't throw a fit, he will just leave that little ingredient on his plate (The other night it was celery in the stew. He ate around it and was left with a little bowl full of celery haha). He is always talking about "baby sister Lexi" and is starting to make some connections that the things in our house aren't all his anymore. It will be interesting when we make the transition into his big boy room, whenever we get our act together to get him in there. Hopefully that transition is relatively smooth. He is going to be a great big brother and I am excited to see how he and Alexis interact!

Premier Designs Rally

Ok, this post is, admittedly, a little different than most of the ones I have done recently. There are some applicable things, though... I am currently at the Premier Designs national rally in Ft. Worth, TX. Since this is now my full time job, at least for a year, I made it a priority to be here, even though I knew traveling this late in pregnancy would not be easy and I don't like being away from Jason and Levi. Little did I know I would be getting so much more than tips about selling jewelry while I was here. Jason and I came last year, so I knew a little of what to expect, but I also knew there would be new things. First of all, I met several people who are praying for me and Alexis. One of these people is with premier specifically for the purpose of praying for jewelers who ask for it. Mike is from Albuquerque and is part of the Premier prayer ministry at the home office. What an amazing company to value prayer so much that they have a dedicated team specifically to pray for their employees and jewelers! Anyway, I planned on meeting Mike but didn't exactly know how to do that. The Lord knew, however, because we just happened to run into Mike in our first 30 minutes here! What a blessing to meet him and to give him the last bit of information in person. I'm back in NM now!! We made it back safe and sound from Dallas and it feels so good to be home. It was very refreshing to be with all of those lovely ladies but it's very nice here. Not to mention it was pretty hard on my body to be sitting so much for the past few days. I have a mover and a shaker on my hands and she didn't enjoy sitting still very much! I'm very glad that she enjoys being so active, but it gets exhausting after a while. Next appointment is tomorrow and I'm sure she'll pass her test with flying colors!

Update on the fluid level and hospital pick

I had a quick ultrasound on Wednesday of last week that was very reassuring. Alexis underwent some large and small movement tests and passed them all with flying colors. She even surprised the ultrasound technician with how well she was practice-breathing, which is a skill she is going to need to be proficient at when she is born. The technician also checked the fluid level around her heart and said it had lowered since the last ultrasound. She wouldn't comment too much about it because she's not a doctor, but she said it looked just fine to her. We also discovered that this little girl is a contortionist because we got a picture with her feet up by her face. No wonder I've been feeling such weird movements! She was also sitting directly on my bladder, which also explained a lot. She has moved quite a bit since then, so she is keeping me on my toes. We are pretty confident we have decided on a hospital. We are thinking the one in Denver is going to meet our needs the best. Not only are they a fantastic hospital for HLHS, but they are the closest to family and there is a labor and delivery unit in the children's hospital, which is pretty rare. That means I will get to recover in the same hospital she is in, which normally would not happen. That was a big plus to me. The only negative with that is I will have to be induced, which is not exactly my preference, but I will do whatever it takes to be as close to her as possible. Now on to preparations for relocating in a few weeks. We aren't sure what exactly that is going to entail, but hopefully once we are in touch with the hospital there they will tell us what all we will need to do. Those are the updates for now. Thanks again for the continued prayers and support. We know the prayers a working because she is doing so well and the fluid level around her heart has gone down. I have already run into complete strangers who are praying for us and it is so encouraging how the prayer warriors rally around each other in times of need. We serve a mighty God and I can't wait to see how He continues to use Alexis to show His plan and His glory.

More than we bargained for

This afternoon we had another doctor's appointment. We assumed we were just going in to meet with another perinatologist but it turned out we had another ultrasound first. I'm not complaining about that at all because I love getting to see Alexis as much as possible. However, when the doctor came in after the ultrasound she said they could see some fluid around her heart. It wasn't a ton, and it didn't make them super concerned, but it was enough that we have to go back every week for the next month to have it monitored. If it gets worse, they will deliver her early, which would not be a good thing. The doctor kept saying that we want her to be as big and strong (her exact words were "rough and tumble") as possible before she is born. We will see how the next few weeks go, but prayers for that to be resolved would be fantastic! We also get monthly anatomy scans, so we will see her at least 2 more times in her entirety before she is born. The technician was able to get some 3D pictures of her and she is looking pretty cute! We had no idea going into the appointment today what the next couple of months would bring, but apparently it is a whole lot more appointments with the perinatologist (high risk pregnancy doctor), the ultrasound technician, and the cardiologist. We are thrilled to have the chance to receive such great care, and we feel very fortunate about our situation in that respect, but it is hard thinking about what is coming up so very soon, and why all of these visits are necessary. Another prayer request that we have is for guidance in picking a hospital. We are leaning towards Denver, but only because that is really the only one the doctors talk about. We are still planning to go look at Dallas and Houston, because we want to be sure and pick the best one for our situation, and we pray that God makes it very clear where we should go. We want to make sure we follow His plan through every step of this. Thank you so much for your continued prayers and support. We will keep you updated as much as possible.

Another echo, same results

We had another appointment yesterday to remeasure and take more pictures of Alexis's heart. (She was not cooperating this time and it took the U/S tech a little while to get all the pictures he needed because she was making it very difficult. Our feisty little girl always kicks and punches wherever the ultrasound wand is placed on my belly and it is very weird seeing her move onthe screen and feeling it at the same time.) The doctor saw the same thing and said, in regards to HLHS, she has a less severe case. We are very pleased to hear that. We talked a lot about how to pick a hospital when the time comes and he gave us his 2 cents. WE talked about Children's Hospital Colorado (Denver), Texas Memorial Children's Hospital (Houston), Mott (Ann Arbor, MI), and Texas Children's (Dallas). He said they are all very good hospitals and should not have a problem handling Alexis because of the severity of her condition. We were hoping he would really have an opinion about one or another because we are having a hard time choosing. He said they already sent their initial report to Denver, because that is the hospital they use most often, but he would be happy to send our report to any other hospital we want him to. He also offered to call any hospital we wanted to investigate and talk to the staff there about the specific statistics for HLHS as the hospital. He was encouraging in that he said the survival rate is up to about 85% through the first two surgeries, and reiterated that we should go to a hospital that does a whole lot of these surgeries all the time. We are still very confused about where to go, because we know that God will do His will in her life, but we also want the very best care for Alexis possible. We want to make sure we pick the hospital that will give her the best care so we don't second guess our decision if something goes wrong. We want to be close to our family, too, so we have their support and they are able to be there for us as much as they want. We don't want that to be the only factor we consider though. Sigh. Not sure how we are going to make this decision other than pray that God paves the way for us! Thanks for the continued prayers.

How are you doing?

So many people have asked us how we are feeling now that we know exactly what condition Alexis will be born with. My standard answer is, "Okay." Of course, we are not excited about having a medically fragile infant who may not even survive her first surgery, but we have decided to put all of our faith and trust in God, rather than medical technology. Of course, we know that God could use the medical technology to save her, but ultimately it is His will that will be done in her life, and we are so grateful that He already loves her enough to keep her and us right by His side through all of this. We still have not made many of the major decisions regarding her care (which hospital to go to, etc.) but we have decided we will basically do whatever it takes to be able to bring her home with us. I am so thankful that we have hope outside of our own understanding, and I know that her life will have a purpose and a meaning, no matter how long she is with us. Right now, both Jason and I feel like she is going to be with us for a long time, and we have a tremendous peace about that, but we know it is going to be a tough road through her birth and her first months of life. There has been such an outpouring of support for us and so many people have offered to help us in any way they can. What I ask for at this moment is just prayer: that she would be born healthy and that she would be healed, either through a miracle or through the doctors and surgeries. We know God is in control, but we also know that He listens to and grants the desires of our heart, as long as they are in accordance with His will. We are praying that He would heal Alexis and use her for GREAT things to further His Kingdom. She is already impacting lives and I can't wait to see how that continues once she is born. Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight. Proverbs 3:5-6 Delight yourself in the Lord, and he will give you the desires of your heart. Psalm 37:4