It’s amazing how many emotions you can go through in one week. This last week has definitely been one for the books, lots of hills and valleys, and lots of tears and laughs…and lots of food…I don’t care what “they” say, sometimes good food (mainly popcorn with lots of butter and salt) does make you feel better .
We had a really hard ultrasound this last week. This was the first time that Paxon was facing up, which was a good thing, but it was also really startling because we got a lot of clear images of his cleft lip/palette. It’s pretty awful. It goes so high up that it’s also pulling down the side of his nose. Tomorrow we meet with a cleft lip/palette surgeon, and we’re really looking forward to talking with him about the surgery, what he thinks Paxon’s face will look like afterward, and we’re hoping he’ll have some information for us on giving him enzymes and feeding him until the surgery. Both Jeremy and I have been avoiding Google and doing any searches on the subject for fear of seeing too much. We’re hoping the surgeon (who we have heard nothing but wonderful things about by the way!) will be able to educate us and prepare us for taking care of our little peanut…hopefully all of this with avoiding any “before” shots. I’m thinking naivete may serve us well in this area.
Then the ultrasound tech got really quiet for a really long time…like 45 mins. The only thing she said during that time was, “your baby’s heart is changing.” Um ok, let me try to hold it together and not bust into tears while you’re looking for fine details on my baby’s heart all while my mind is racing thinking about the millions of different problems that could be wrong with him, sigh…if you can’t say something nice, don’t say anything at all!!! So then a doctor, who either doesn’t have kids or was having a really bad day, broke the news to me saying, “well you know your baby has a lot of issues, so this shouldn’t surprise you.” Seriously, lady?! She told us they are seeing a narrowing of the Aortic Arch in his heart, and the right side of his heart and his heart as a whole is larger than it should be. She continued to talk about Paxon’s life so flippantly with this “we told you so” attitude. Needless to say we left there feeling defeated, like the initial diagnosis we received about losing him early was going to come true for our sweet boy, and like we were the only ones fighting for his life.
Then I was so completely blessed by my friends Krista and Natalie who planned and organized a beautiful shower in honor of Paxon, with all of the girls in our Bible group. It was such a beautiful morning with lots of great food (again, joy!), great laughs, and a really sweet prayer time. It was a perfect morning, and the best way to get me out of the black hole our ultrasound had sent me into. Here are a few pics from our morning together. Thank you girls for all you did to make a special morning for me, and for blessing our family in more ways than I can share in this little blog post.
Monday, we then headed in to see our Cardiologist about the ultrasound findings. Again, another couple of hours of them looking at Paxon’s heart and trying to figure out if there was indeed something to be concerned about. Our doctor met with us afterward and basically said that he sees why the other doctors might be concerned about a few things, but that he’s not seeing anything that we haven’t seen before (2 holes in his heart, and leaky valves) and that we shouldn’t be concerned about inducing or immediate surgeries. Yeah, we were pretty excited about this appointment and immediately spun our wheels back into hopeful mode.
Then my Children’s Ministries peeps threw an amazing shower for us at the church. They thought of everything, an owl cake, great food (including popcorn!!!), a devotional from our Pastor on sisterhood which was so perfect, and they had it setup like a little carnival that people could play games for $1.00 to win a candy bar. Well, you want to know how much money we took home for Paxon expenses…$740.00!!!! Simply amazing!!! And, such a wonderfully practical way to serve our family. Jeremy and I were just talking tonight about how I’ll probably be in the hospital for weeks and need to buy meals, and he’ll be driving about 70 miles round trip to see us, so we’re tucking some cash away to pay for things like this, and saving the rest for the enormous amount of co-pays and medications and whatever else will come our way. Anyways, we were so incredibly blessed again by so many wonderful friends!
Then, I got a call today from our Cardiologist again. He said, “I’m sorry, I may have given you false hope.” And preceded to tell me that he showed Paxon’s ultrasound images to his team and they’ve all decided that Paxon may indeed have a coarctation (narrowing) of the aorta going on, and they want us to come back in a few weeks so they can look again. He seemed way less confident this time. He talked about a surgery that they may have to do on Paxon pretty much right away after delivery where they go through his side under his arm. And, he recommended that we deliver at a different hospital so that we can be closer to where he would need to go in case he needs this surgery. Nothing is definite yet, but just another example of how this last week has been a roller coaster for us.
So…as our last few weeks are filled with appointments and so many unknowns, we are scared, yet we are finding peace in what’s to come. This truly is a peace that only God can give. We know He is answering prayers, and we cannot thank everyone enough for begging God for His peace and mercy upon our family. We’re so thankful. It seems like every day we get an email or a card from someone we don’t even know saying they are praying for our family. It’s incredibly humbling. We don’t know why this is happening to our family. We have so many questions that we may not know the answer to until that day we meet our God face to face, but we do see Him through all of this. He loves us. He is with us, and he’s promised for good to come from this. We don’t truly understand how that can be, especially when we think about losing our child, but this is where true faith and trust in Him happens. This is where what we know as truth becomes what we believe and how we live. That doesn’t mean it’s easy, because it downright sucks at times…but there is peace for what’s to come.
I know I’ve said it a million times, but we truly cannot thank everyone enough for all of your thoughts and prayers and your love for our family. It’s overwhelming. We love you.