Feel the awesome.
20
Aug 2010
So Much Uncertainty
So once again our worlds have been turned upside down. I’ll warn you, this post will probably be pretty raw with emotion, will probably contain some rambling, and will definitely be written through tears so forgive the typos. Let me begin by saying that we found out we’re having another little boy. We are so thrilled to have another son, and for Asher to have a buddy for life. His name is Paxon Ray, and we love him so much already.
We went in yesterday for our 20 week ultrasound. Again we were so excited, and even brought Asher (proudly sporting his Greatest Big Brother shirt) with so that we could all find out if we were going to have a baby girl or boy join our family. It didn’t take long for the ultrasound tech to inform us that we were having another boy. That’s when the tears started, and unfortunately they haven’t stopped much since then. I could tell something was going on because the lady was taking her sweet time looking over things, until she very delicately (not at all!) told us that our baby has a cleft lip. Again lots of tears. Jeremy and I looked at each other with this, “is she kidding us!” look. All we’ve been praying about and focused on was this baby not having Cystic Fibrosis, I didn’t even think to pray about cleft lips or really anything else for that matter. We obviously had a million questions and concerns, and she really wasn’t into explaining things much, and certainly didn’t have a sensitive bone in her body. She left and said she was going to send a doctor in. We’re crushed at this point because all we are thinking about is all the horrible images you see of people with cleft lips, and it’s devastating to think about your baby looking like that.
The doctor came in and thankfully he was really nice and didn’t make me feel bad for all my sobbing while he was trying to get another look at Paxon. Things were quiet for way too long and again I kept looking at Jeremy, and we knew the cleft lip was not the only thing that was wrong with our baby. The doctor then told us and showed us on the screen that Paxon’s right femur bone is bowing, and his right hand is stuck in one position – his middle three fingers are bent and his pinkie and thumb stick straight out. At this point we’re crushed and cannot believe the things we’re hearing. I felt so bad that Asher was there for all of it. He kept coming up to me grabbing my arm saying, “Hold you, mommy, otay, otay, Mommy.” It was so sweet. But he was also chucking toys across the room and literally doing laps in the very tiny room full of equipment. He knew something was wrong and he did know how to handle it. I wish he wouldn’t have been there to see everything, I guess we were just thinking it was going to be a quick celebration.
The doctor basically told us he wasn’t sure what was going on. The cleft palette would be one issue to deal with all by itself, but because it’s coupled with these other issues with his hand and femur bone that we were probably looking at a chromosome syndrome and mentioned the trisomys – these were our worst fear. They usually result in miscarriage, still born, or early death. So the next step for us was an amnio to figure out what kinds, if any, chromosomes we’re dealing with. If Asher hadn’t been with us they would have done an amnio right there, but instead decided to send us home and we had an appointment with a genetic counselor and the amnio today.
Thankfully our friends, Dave and Krista, took Asher for the rest of the night because he needed some fun and we needed to process. Last night and this morning have been a couple of the worst days…right up there with the day we found out Asher has Cystic Fibrosis. But, this feels worse. We don’t know what’s wrong with our little guy and it’s really hard to figure out how to cope and deal and fight when we don’t know what we’re faced with. I woke up this morning and wasn’t up long before it dawned on me that this wasn’t a dream, and I crumbled. We feel like our hands are so full with CF, how are we going to be able to care for another child with special needs, and are we even going to get to meet our little boy.
We felt a little encouraged after our meeting with our genetic counselor and another doctor today. Our genetic counselor told us that after we left yesterday practically all the doctors in the office were looking over Paxon and trying to figure out what’s going on. They were tossing around a few ideas (scary ones) but wanted to get another look at him. Thankfully we had done the early screening tests too so the doctor and the genetic counselor had some more information to go off of. His results, and the doctor getting another good look at Paxon pretty much said our chances of dealing with any of the trisomys would be highly unlikely. Jeremy and I honestly kind of feel immune to statements and percentiles like this since we have 1 out of only 30,000 people in the US with CF. We just live in the highly unlikely. But the doctor looking at Paxon kept saying some stuff that was pretty positive to us. He said his head looks good, his spine looks good, he has 12 ribs on both sides (this was huge and eliminated the scary other options the doctors were talking about), the location of his ears look good, and his basic bone structure also looks good. This is all encouraging.
What doesn’t look good is that he definitely has a cleft lip and palette on the right side. The doctor said that it’s all the way up and all the way back which was again crushing to hear. His hand was in the same position as yesterday with his clenched middle three fingers. The hand was the thing I was looking for right away on the ultrasound because I felt like maybe if that was ok we were just dealing with a cleft palette/lip. We saw his clenched hand and my heart dropped again. The doctor said that this means his hand has formed abnormally. He said that we may not know what his hand will look like until after he’s born. The options are either that it’s webbed (we’re hoping this is the case), or that he’s missing the bones in the top parts of his three fingers which is more serious and harder to fix. We just may not know about this until we see him. His femur is slightly bowed, and slightly shorter. I like the word slightly. It seems like hardly at all to me, but we again may not fully understand this and the ramifications until after he’s born, or after we figure out what’s going on with him. We should have our test results back from the amnio in 10-14 days. I was hoping for more like 10-14 hours, days seems a bit agonizing to me right now. On a side note, that amnio sucked. The thick German lady who did it told me it would be just like drawing blood, um…yeah…if that’s the case then she did it wrong. I got super hot afterwards and thought I was going to faint, and now I’m having really sharp pains and cramping. I know everything is fine, the procedure just sucked and it definitely wasn’t like a little blood needle. I guess they’re just built stronger in Germany.
So I’m not sure how well I explained everything. We’re just feeling a bit numb, heartbroken, and overwhelmed right now. The hardest part is not knowing what we’re dealing with.
We have a bunch of prayer requests for our little Paxon, if you think of it would you please pray for him and ask God to move some mountains…
-That we would miraculously see his little right hand move when we go in for another ultrasound in two weeks. Or at least that they would get a better look at the bones in his hand. Or that it’s webbed. This is also pretty fixable, but if he’s missing bones that’s a whole different issue.
-We’re really fearful about Paxon being mentally handicapped, please pray that his brain would be functioning properly
-Although it would mean that we still don’t know what’s wrong with Paxon, we’re praying nothing would come back in the chromosome tests
-We still don’t know whether or not Paxon has Cystic Fibrosis on top of all of this other stuff. We’ll find that out with the other chromosome results in 10-14 days. Please pray he also doesn’t have to have these struggles.
-That God would just give Jeremy and I the strength to walk down this path. We love each other so much and just keep clinging to one another and that won’t change, but just thinking about taking on a new syndrome or disability or whatever we’re dealing with just makes our whole bodies hurt
-That God would save little Paxon’s soul. As long as his eternity is in heaven with his Father, all this stuff really doesn’t matter in the end
Thank you so much for your love!
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The teamASHER Silent Auction
A Slice of Yesterday
Praying for you guys and your sweet little boy, Paxon.
Oh Rachel… my thoughts are with you, Jeremy, Asher and little Paxon. May you hold tight to the love that you feel for each other and hold tight to each other, friends and family during these times… I pray for you all. Your strength and determination are inspiring to me, and I am blessed to have met you all… If there is anything that I can do, even the smallest thing to help during this uncertain time, please don’t hesitate to let me know.
This is so incredibly hard to comprehend. We are faithfully asking our Lord to move mountains, Rach! Am praying for you ALL and sweet baby Paxon, you are a miracle from God and so so loved! HUGS and LOVE my dear friend.
You did a wonderful job explaining everything Rachel. We love you, Jeremy, and Asher, and are so sorry you are facing such a frightening challenge with your precious baby boy. We will pray often for you all.
As hard as I’m sure that was to write, thank you for sharing the process with us and sharing how specifically we can pray for precious little Paxon. We will continue praying for all of you and will be praying the specific things that you mentioned. We love you all and are so thankful for God’s creation of this precious little boy. He and Asher are so blessed to have you and Jeremy as their parents and we will be praying that you will feel your Father’s presence as clearly as ever. We love you.
Beautiful name. Thanks for helping me know Paxon and how to pray for all of you. One sure thing, he already has the most tender-hearted, compassionate big brother, the most amazing parents, and lots of love and prayers going out on his behalf. We will all learn and understand more and be better people because you are sharing your story with us and practicing an extremely difficult walk of faith before us. Much love.
Rachel, Jeremy, Asher and Paxon,
Please know that each of you are in our prayers.
David & Kiersten
We love Paxon and your entire family so much. We will be praying without ceasing. . .
Thank you for writing that out. I know it must have been tough. We are praying. We love the 4 of you!
We are friends of Jeff & Lori G. and just wanted to let you know your family is in our hearts and prayers. In the past we have prayed for your little Asher and we will join you in praying for Paxon as well. May God hold your family tightly in the palm of His hand.
No No No! That is the only word I can think of. I am so sorry Rachel, so very sorry you are walking this journey. If I can do anything more than pray big, please let me know. I will begin praying fiercely!
How my heart hurts for you guys. Thank you for letting us know how to pray for you all. You are under the shelter of His wings. I know that you can find hope and peace there. We trust in His mercy and grace. Love you guys!
Thank you for sharing. I wish I could find the right words to provide some comfort. Keep being strong, all 4 of you are in my prayers.
I’m praying for miracle upon miracle for Paxon. Thank you for letting us know how to pray for him. I’m praying for grace upon grace for you and Jeremy and your boys as you go through this trial. We love you.
In tears with you. “God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear though the earth give way and the mountains fall into the heart of the sea…” “The Lord Almighty is with us; the God of Jacob is our fortress.”
Sweet, sweet Rachel,
You are a pillar of strength. I will be praying for those mountains to be moved my dear. Love to you.
Paxon has the best family and tummy to grow in, Rachel. I love you and will pray for you, Jeremy, your two sons, and the doctors. May you have wonderful, caring staff each step of the way and us friends to hold you up. I love you!
loving and praying for you. I wish I was there with you.
Thank you for your openness and honesty in sharing your story. I will pray for your family.
I don’t know how you got your fingers to type that through unending tears but am so glad. We’ll be praying for you, J, Asher and Paxon. We love your family and know that God is always with you, even when you feel totally alone.
My heart is heavy for you and thankful that you allow us into your life. We are praying for you.
We will pray along side of you. Thank you for being so specific in how to pray.
All our love and prayers,
Tiffanie for the Family
We love you and are praying for you. God created Asher and Paxon and we find so much comfort in the knowledge that He knows them and loves them. Let us know what you need.
I will pray for Paxon and the rest of your sweet family.
praying, praying. you did explain it well. Thank you for letting us pray with you.
Dear Jeremy, Rachel, Asher and little Paxon. Our prayers have been with you and will continue. May God give you peace and strength. You are so loved.
Jeremy, Rachel, Asher and Paxon, I am sending my prayers and thoughts with you guys! Hoping for good news and soon!
My heart hurts so much for you guys. Thank you for sharing – I will definitely be praying fervently for you guys. Praise God that His comfort is bigger than any of our sadness. Praise God that His loving, faithful arms are always there for us – I’ll pray that you guys spend lots of time in those arms. Run to Him over and over and over – His compassion never runs out.
Dear Rachel & Jeremy–we too are praying for you and your sweet boys.
love in Christ
Tom and Ann
Dear Rachele and Jeremy,
My heart goes out to you all. I can’t imagine how strong one has to be to deal with all that you have and are still. My thoughts will be with you and my prayers will be many. Just remember the Lord never gives us more than we can handle……. Keep your faith and God Bless you all!
sonya
Thank you for sharing. We will be praying for all 4 of you.
Rachel…thanks for explaining everything so openly and honestly! We love your family so much. Pleading to the Father with you…for healing, for strength and for wisdom. Paxon is already loved so much!
My wife , Beth and I will be praying for both of you to be strong and to trust God. We will also be praying that the doctors would have wisdom in helping Paxon.
Rachel and Jeremy,
Thank you for your honesty and openness. We join you in prayer, not looking at the mountains, but focusing on the Mountain Mover, Who is able to do all things. May God carry you on his wings at this time.
Rachel,
Know that George and I are praying for you guys. Thank you for sharing and giving us the opportunity to lift you all up. If you need anything, please let us know…really! We love you, Jeremy, Rachel, Asher and Paxon!
In Christ,
George and Jamie
Dear Sweet Rachel:
My heart hurts for you as I read your post. The uncertainty you are feeling must be so difficult. I will pray for you and Jeremy to have the strength to stand strong in the face of these potential difficulties. You have been such a great example of faithfulness in your care of Asher. I know you two will be a wonderful mother and father to precious little Paxon! Keep strong!! God is good!
Thank you for sharing all this about your beautiful boy Paxon. We love you and are praying for you all as you strive to walk this difficult path. May you feel the support of all who love you and are praying for you. We will pray without ceasing….much love from our family to yours. God is ever faithful … His love endures…
I can’t put it any better than Jennifer Greer did. My thoughts are with you and your amazing family. I know you’ll find strength and love as you always do.
I can’t imagine how much fear and worry you and your family are going through right now. I’ll keep Paxon in my thoughts and prayers, as well as the rest of the family. My words feel so helpless but I just want you to know we are supporting you and will do anything you’d like for us to help.
I love you guys! I pray that God would continue to guide your family along this path with comfort and encouragement. I can say one thing…God has put him in the best possible family!! You are amazing!
I’m a friend of Joanna G’s, praying for all of you. “Your eyes saw my unformed body…” God has Paxon in His mighty hands, just as He is holding each one of you.
praying for each one of you. it’s sweet to know jesus loves paxon more than we ever could and that he knows what is best 🙂 i am excited to see all 4 of you continue to grow closer together as a family and closer to christ because of this trial. praying!!
Oh i am sooo sooo sorry…. Our God is a powerful and mighthy God, Lift it all to him…. My heart goes out to your all ***HUGS***
We’re feeling so overwhelmed by all your love and support! Thank you friends, you are all such a blessing to our family! We’ll keep you posted on how little Paxon is doing, please keep praying for those mountains to be moved!!!!
Hey guys! Just read what is going on and I want you to know that Sonny & I will be standing with you all in prayer and fervently asking the Lord to do a miracle in Paxon and to bring supernatural peace to both of you! I’m so sorry you are having to walk through this. The only comfort I know is that He is more than able to move mountains on your behalf and he is faithful in all things. We love you guys and are standing with you in prayer!
Sonny & Missy
Rachel, Jeremy, Asher and baby Paxon, We are praying for all of you.
Rachel and Jeremy, Bill and I have too been praying for you and all your family. You have already proven that God knew exactly what he was doing when he sent precious Asher to you and He has chosen you for Paxon as well. Stand strong in Him and remember that He NEVER makes mistakes. Our love and prayers are with you. Romans 8:28
We’ll keep lil’ Paxon in our prayers. Keep strong, and never hesitate to ask for help.
Praise God you know the truth! At a time like this you have to cling to what you know to be true. God loves each one of the four of you more than you can imagine. As I look at all the love and support He has surrounded you with the word, Wow, comes to mind. No one wants you to have to walk this road, yet here you are and we know Jesus is carrying you right now. Thank you for sharing your heartache with us. Yes, I will be praying to the God of the impossible to move this mountain!!!! you are loved…
Rachel and Jeremy my heart goes out to you. We will keep all four of you in our prayers. Please remember, God has a plan for everyone. Have faith, stay strong. If there is any way I can help, please let me know!
Jeremy and Rach,
My heart is so heavy and saddened that Paxon seems to be beginning life with so many possible challenges. Please know I am in prayer for him and your family as you process this huge disappointment and trial BUT know our Father will carry you through this. Praying for huge miracles, comfort and strength as you walk this walk.
Rachel, I’m speechless…I am praying for you completely and praying that God will somehow give you peace through all of this. We will be praying for Paxon.
You do not know me, I am a friend Of Danas. I am very sorry to hear about what you two have been going through. I will keep you in my thoughts and prayers. Stay strong, God has a plan for everything. Keep your faith.
Hi J & R, just prayed for you guys and little Paxon and Asher too! I know you’ve heard this a thousand times, but God’s GRACE will be sufficient for all of you. Psalm 3: You Oh Lord are a shield about me, my glory and the ONE who lifts up my head.
May you feel the presence of Jesus today and know that you are being lifted before the throne.
Dan & Deb Moon
Just heard the news — another boy (the Hoversons truly are destined!). We will be praying for strength for you both, God’s wisdom and that of the doctors. But remember, GOD is BIGGER than all this and has a plan. Hugs for you both and Asher too! Love, Wayne and Jane