Feel the awesome.
07
Dec 2010
One Week
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.
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The teamASHER Silent Auction
A Slice of Yesterday
So beautifully written. Your trial is so painful, yet you lift the name of Christ in your words and your trust in the Sovereign plan of God is clear. Your voice reflects your heart of God given strength in the midst of trouble…”Yet I will rejoice in the Lord. I will be joyful in God my savior! The sovereign Lord is my strength; He makes my feet like the feet of a deer. He enables me to go on the heights.” Hab. 3 I pray that the Lord will not let you grow weary, my sweet friends.
Thank you so much for sharing, Rachel! I’ve been wondering how things are going and you have definitely been on my heart lately. I will continue to pray…
Wish I were there in person to hug you and bring you a big ol’ bucket of buttery popcorn – I’d even eat it with you!! 🙂
We love you guys so much!
xoxoxox
You couldn’t be more beautiful, Rach…both inside and out!!! What amazing groups of friends to love on you and Paxon and your family like that. Praying…
Love you!
I can’t say it enough…God has truly blessed you with amazing brothers and sisters in Christ. They put their faith into action and for that I am very, very thankful. We continue to pray for God’s peace…the peace that only He can give. I love you!
My thoughts and prayers are always with you guys. You have an amazing support group of people! Lots of love surrounding you!
Oh Rachel, my heart just sinks for you… What an emotinal week… I am so glad God is surrounding you all with loving support…. Our God is a mighty God and you are rght he is with your family and he will continue to carry you through each step in your journey.. Lots of HuGs and love your way!!!
I’m so glad that you have such wonderful people in your life to “balance out” the awful doctors! When I read about their insensitivity I just want to grab them and shake them and tell them that they have no business even being doctors!!! Then I realize that these people have no hope, as we do and just pray that God will prove them wrong!!! Your strength, courage and faith continue to blow me away – you are both such a testimony to God’s goodness and I know that all the insensitive people you have to deal with will, in the end, be blessed. One of these days I hope to meet you in person, Rachel:-)
You are the ones showing faith, and love, and trust – to US.
I have learned so much just by watching you journey. I have admired and greatly respected the amazing family you are, and how personally you are still able to hold tight to your Lord, and to stay positive. I know that Paxon is working amazing things in your life, through his Father God, but know that you all are also working amazing things in others lives as well. How extraordinary that these 2 little boys of yours have touched so many people and they are not yet even through toddlerhood 🙂 That is amazing. You are blessing all of us. And when you go to these appointments, know that we (your army) have your back, and will continue to fight as warriors with you.
Oh sweet friend…what a week you’ve had. So thankful that you’ve had some precious moments in the middle of some hard moments…what a blessing. Thank you for sharing your heart…even though I’m sure it’s incredibly hard to do so. We are praying for you every day.
Prayed for Paxon a lot during my test yesterday. Thank you for sharing even thought its hard, because now we know better how to pray for you and Jeremy and for Paxon. We love you and know that God holds Paxon in His hands. We serve a God who does mighty things and offers a peace that is incomprehensible. We love you dearly.
Rachel,
My heart is so blessed by your words, your faith in the Lord is making you strong, courageous and mighty. May HE continue to bless you with peace and mercy.
Your words are truly beautiful, my Friend. Even more beautiful, is seeing you & Jeremy live out those words everyday with the courage and peace and grace that could be explained by nothing except Jesus. I gasped aloud when I read about the phone call this morning. I am so sorry to hear that. We know the real hope comes from the LORD & we are praying for huge miracles for beautiful Paxon. *Hugs*
i am so sorry rachel. it’s so hard to receive news like that. I pray that God give you strength and peace in these last few weeks. and we continue to pray for Paxon.
I can’t believe how cold people can be—wish I could have a “talk” with some of these doctors of yours. You guys keep on fighting and we will all be here to stand right by your side in battle.
We love you Olimbs!
Rachel- thank you for sharing your struggles… My heart is with all of you… Please don’t hesitate to reach out to me if ever it is needed… We pray for you, Jeremy, Asher and sweet Paxon… Hugs!
we LOVE you guys… xoxo (and p.s. you look gorgeous)
Rach-
You are one of the strongest mommies I know. Your love for Paxon is so strong, I can feel it way up here in frigid ND. Thank you for sharing your journey with us all.
Sending love and prayers your way,
Kate
Thanks for sharing Rach,
We continue to lift you up in our prayers here in Minnesota!
XOXOXO –
PS, you look so pretty in the pictures!
Thank you for writing this Rachel, it’s so great to get a peek into your life. You captured your emotions so beautifully. I’m so sorry for the lows of the week. Yowser. So thankful to the Lord for providing you with highs–what a wonderful group of ladies who are surrounding you. I loved seeing the photos! Bless you dear one.