A close friend who went through something similar told me that she never felt closer to her Heavenly Father than she did during that time. I can totally relate with that, and I'm sure we will continue to feel so when Ethan is here and we are making very important decisions about his life.
Our families have been AMAZING! Really, I cannot even attempt to list all the things they have done for us to help us. They have helped us physically, emotionally, spiritually and I'm sure in many many ways that we aren't even aware of.
We have great support from friends both far and near. Friends from our ward at church have stocked our freezer with meals we can eat after Ethan comes. What a great blessing!
We have even been blessed by the love and support of people we have never met. News travels fast, thanks to Facebook and the Internet, and we have received gifts, words of encouragement, and prayers from so many wonderful people that we don't even know personally.
One thing that has helped to calm my nerves about so many unknowns in our future is the connection to other "heart moms." I have to tell the story of how I met Alli. Years ago, right after Jeff and I got married I started reading a blog. I don't remember exactly how I found it, it must have been a friend-of-a-friend or something. Anyway, I was so amazed at how brave this family was during such a difficult time. Their baby boy was diagnosed with a severe heart defect and was in the hospital for several weeks after he was born. Well, fast forward to this year. When we found out our baby boy had a severe heart defect I thought, "I wonder what that boy's diagnosis was?" I searched until I found that blog that I had read so many years ago and guess what... their baby boy had HLHS and our baby boy had HLHS! But that's not even the end of the story. I re-read the blog and it gave me so much peace to know that other families had been through this and that they are doing well today. After we got our diagnosis, I sent an email to our families about what we were going through. I sent a link with some information from the Mayo Clinic and a link to Alli's blog so our families could know what kinds of things we might be going through. The next day I got a call from my brother-in-law asking if I wanted to talk to Alli. He had lived in the same apartment complex as her in college and was friends with her on Facebook. Crazy, right? Of course I jumped on the opportunity to talk with another HLHS mom and she has been a great resource and friend ever since. The Lord truly directs us in our lives. I know that to be true.
After meeting and talking with Alli, we have also had the experience to meet with other heart families. There is something that bonds you to these people who have been through something so difficult. I have so much respect for others who have had a heart baby or who have lost a baby. Their strength truly strengthens me.
Lastly, my pregnancy. I can honestly say that I have loved being pregnant with Ethan. It has been a very easy pregnancy, health-wise. I have a had minimal symptoms and have been relatively comfortable the whole way through. Even now, at 39 weeks, I am more comfortable than I thought I would be. I don't know if it's because I built it up to be really really terrible, or because I have been very very blessed. It's probably both. But I also know that a part of it is because I know I will miss it so much. I will miss having Ethan with me 24/7. I will miss feeling him moving around all the time. I will miss knowing that he is doing okay. I have so many mixed emotions about delivering Ethan because I am so excited to meet him, but I also know it is the beginning of the end. We have no idea how long we will get to spend with Ethan on this Earth, but we do know there is a very small chance it will be longer than 9 months. If he makes it to his Glenn procedure (the second open-heart surgery, 4-6 months old) then his blood flow to his lungs will go from "active" to "passive." Meaning his heart will no longer be pumping blood directly to his lungs, but should flow there on its own. But because of the damage done to his lungs due to his intact atrial septum (IAS), this will not work out for Ethan and he won't do real well after this procedure. Who knows what will come in our future with him. There may be other, better options for him when the time comes, but my point is that the 9 months that I have carried Ethan will probably be the longest time we have with him and the most memories that we have created.
I used to have a really negative opinion about maternity pictures. But pretty much every mom I've talked to who has lost their baby said that they wished they would have taken more pictures of themselves pregnant. I followed their advice, knowing that I may not love them, but it was something that I would never be able to get back. I hope that these pictures will help me remember what a blessing it has been to carry this special baby for the past 9 months. My sister set me up with an amazing photographer, who is a friend from church. I left her watermark on several of the pictures because she did such a great job (with us goofy people she had to work with). If you want her information, let me know. We are so thankful that she was willing to take these special pictures for us.
Ha ha ha, I had to add this last one. If you know Jeff, this picture makes so much sense! Natalie said to look at my belly, and this was his reaction. He makes me laugh, all the time. I am so grateful for that!