Feel the awesome.
29
Dec 2010
Moving.
Well, tomorrow Paxon will get his first, and hopefully last, ride in an ambulance. They are transferring us to a different hospital because they are more equipped for pediatric procedures and surgeries over there. Right now things are still pretty up in the air as far as the surgery (if any) Paxon will need. You would get a way more detailed and descriptive explanation if Jeremy were here to write, but the short of it is that Paxon has been suffocating. Two nights ago (before the breathing tube) will go down in the books as one of my worst memories, especially knowing now that the reason he was incredibly uncomfortable was because he was fighting so hard to breathe. We’re thankful for the breathing tube because for the most part he’s peaceful now…but it just kills me to see him with it. It’s really hard to cope with when we see the nurses and doctors running tests on him, or poking him with needles (it took them 7 tries to get an IV in!), or just adjusting him, and he starts crying. We don’t hear his cries because of the tube, we just see him upset with tears flooding his eyes. I can’t wait to hear his little cry again.
We are faced with a few different routes, and depending on the results from tomorrows procedure (they will put a scope down Paxon’s throat to look at his airways) we will go from there. If his airways look good, we’ll be moving on to cardiac solutions involving surgeries; if his airways look floppy then we’ll probably be faced with a tracheotomy. Of course there is that possibility that his airways look good, and he starts responding to medication and can expel the carbon dioxide easily when he exhales, but the doctor doesn’t think this is a realistic expectation. I’m going to pray for this anyways.
Right now we can’t hold our little Pax, and this is pretty torturous. This is the time when he most needs some loving arms wrapped around him consoling him, and all we can do is rub his little body through the port holes of his bed. I’m really hoping this won’t last long, because I just ache to hold my baby!!!
So, we’ll all have a new home tomorrow. We’re very, very thankful because we got the last room at the Ronald McDonald House, which is on the campus of the hospital. Right now either Jeremy or I have been able to stay in Paxon’s room, but the new NICU is setup in a pod system and so there is no sleeping next to your baby…don’t get me started on why I hate this. But, we are getting the best case scenario with having a room on-site because this also means that Asher and Grandma and Grandpa will be able to come and visit us too. Last night I called to talk with Asher and he said, “love you, Mommy” in a weepy voice and handed the phone to Grandma. My mom said he was crying and that he just missed me…rip my heart out!!! So, Jeremy in his endless wisdom brought me home for a night so that Asher could see both Mommy and Daddy in the morning. It was nice to have a morning together, especially in preparation for some hard things we’ll be dealing with this week.
We can pretty confidently say we’re sad to leave this NICU. We’ve come to love so many of the nurses and doctors here, and even Jeremy and the doctor he gave the flying elbow drop to have become buds. One of the nurses tonight told me that everyone loves our family, Paxon is one of their favorites, and the doctor (who Jeremy and I are sad to leave) said she was up all night thinking about Paxon and researching his chromosome deletion. It’s going to be hard to leave when we feel so loved here. I’m certain many people have been praying for what’s happening to us with the staff, because it seems really rare, especially after we’ve traveled this really long road of dealing with so many inconsiderate medical people. I just hope we have another great team at the new NICU.
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The teamASHER Silent Auction
A Slice of Yesterday
Love you… praying for you… believing in God’s amazing goodness, mercy, grace and love for the plans He has for the Olimb family!!! I know there are Awesome things in store for all of you!
Tell me about it…it feels like you are leaving a family behind huh? So glad you were loved and that Paxon got to be the favorite…nothing like getting the teacher’s pet award? How could you not be a favorite when you are so darn adorable! Love the new pictures…you amaze me that you can still take stunning pictures through this all! I sent ya an email tonight!
My heart breaks for you that you can’t hold him – that would absolutely kill me too! I’ll be praying that you can snuggle and comfort him again very soon. Loving you all… The Chuns
But now, listen to the Lord who created you.
the one who formed you says,
“Do not be afraid, for I have ransomed you.
I have called you by name; you are mine.
When you go through deep waters,
I will be with you.
When you go through rivers of difficulty,
you will not drown.
When you walk through the fire of oppression,
you will not be burned up;
the flames will not consume you.
For I am the Lord, your God,
the Holy One of Israel, your Savior.
Isaiah 43:1-3
Keep all these wonderful blessings and unexpected kind answers to prayers in your heart and on your mind and let your faith become huge and fill you with the peace of God’s hand resting upon you. Much love to all of you.
Paxon is so beautiful! Our family is praying for you and little Pax. Prayers that the next NICU is wonderful as well. Megan
praying…praying…praying…
So thankful that that NICU has been so good…that you and you and your sweet little guy were so loved on…and we will be praying that you will feel just as loved at the next NICU. Those pictures are absolutely beautiful…Paxon is just precious. We are praying constantly…thank you for keeping us updated. Love you!
Just like you can feel God’s love, Paxon can feel yours….even if it is just through a port hole. He knows you are there loving him.
Praying for quick answers and a smooth transition in whatever it may be. I too will pray for the responding to meds and clearing of CD. I know God is preparing wherever it is you are going just for you and sweet Paxon-who is just so darn beautiful by the way. Thank you for keeping us so informed so that we can pray for each step.
Glad you got a night at home with Asher, I’m sure he loved it as much as you did! Love you friend.
We love you. Praying, praying, praying!
I just knew that you, Jeremy and Paxon would soften the hearts of those doctors and nurses:-) What a testimony you all are to God’s amazing love and peace even in the midst of such a difficult trial!!! Your suffering is not in vain (even though that doesn’t make it any easier). Paxon is such a darling little guy. I’m so sorry that you have to move to another hospital – will definitely be praying!!!
Hi there, my dear friend Jen sent me over. Your boys are gorgeous! She sent me because my son has a trach, has had 3 heart surgeries, and has spent most of his 5 years in a hospital room. I can give advice, answer questions, or just listen to your fears! Praying for your baby boy!
My email is laceyrugg@hotmail.com
Paxon is simply beautiful. I am so glad you felt so loved and cared for and will pray you feel the same love and compassion from your new team. As someone mentioned above, Paxon can so feel your love, even if you aren’t able to embrace him the way you ache too. He felt your love for 9 months and it continues now. We all continue to pray…and love you all
Emily
It’s no surprise that the docs & nurses fell in love with your family and that sweet Paxon was their favorite 🙂 They clearly have good taste. We are praying that you get the same amazing care as you move to the next hospital. Thank you for posting more pictures of your boy. We are all eating these pictures up! Paxon is so precious.
“The Lord is close to the brokenhearted and to those who are crushed in spirit.” Psalms 31:18. . . may you feel God’s presence especially close right now!!!
Thanking God for Paxon and his safe delivery today and praying for your family as you handle the cares of each day. Know that you are all loved so very much by all of us here and so much more by our Father above.
Praying for the safe transfer, for Paxon’s doctor’s and nurses wisdom, for you to KNOW that God is at your side…and may you know that your touch on Paxon is the gift he treasures the most . Nothing like a Mommy and Daddy’s touch :>) Love you guys deeply.
You are all in our prayers and thoughts. Praise God for the little things and for using you as a vessel for His glorious Word. I know God will provide you with what you need…no matter where you are. “Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go” ~Joshua 1:9
Love you guys!!
For God alone, O my soul, wait in silence,
for my hope is from him.
He only is my rock and my salvation,
my fortress; I shall not be shaken.
On God rests my salvation and my glory;
my mighty rock, my refuge is God. Ps 62:5-7
Reading your post through many tears…thankful for God’s provision in being able to go home and be with Asher…thankful that you have a room at the Ronald McD house where Asher, Grandma and Grandpa can visit (you so need little Asher’s hugs and kisses right now!). I understand the tension of moving forward and yet so sad to leave people that have loved and cared for you (how could they not…you are an amazing family). I’m praying for you, crying with you, longing to hear that you are holding sweet Paxon (love the pictures…he’s just beautiful).
May the Lord of peace give you peace at all times and in every way(2 Thess 3:16) Praying daily. Love you guys!
I am so glad the doctors loved and took care of Paxon. Praying they will be the same at the new hospital! I am glad you also go the last room at the McDonald house. I am also glad that your parents are here to take good care of Asher. Praying for peace for you all.
We can’t begin to imagine the heartbreak and yet the joy you are feeling at this moment. What we went thru with the premies (1 lb 13 oz and 1 lb 3 ozs) can not begin to compare. However, the sadness and the emptiness you feel in not holding him we can identify with. Praise god for the miracles that have happened and for Gods grace for the next steps. We are praying for all of you! Blessings
Paxon is beautiful! Keep the pictures coming. I pray that Paxon will continue to feel not only his earthly parents love and touch, but his heavenly Father’s love as well. We serve a BIG God!
That is absolutely the most beautiful photo I think I have ever seen!!! I can think of no better way for you to have rung in the new year and I am so grateful the team made it happen!!
*~prayers~*