Owen is weighing in at 21.5 lbs and 30". He's not crawling, walking, or bearing weight in his feet yet... but guess who mastered the BUTT SCOOT this week??! He loves to chatter... "ma-ma","da-da", "bubububobobo", "ah dun", "du-du-duk", "na na no no no", "AAAAHHHH", spitting, clicking his tongue, smacking his lips and OOOOOOOOOO how we LOVE the wet KISSES!! He loves to Clap, do "so big" and helps us do the motions to many songs. Owen has found a passion for food and will eat anything you put in front of him. If only a bite or two weren't so tiring... he'd probably eat everything in front of him too.
Our other little smarty pants just brought home her report card with all A's and 3's. It doesn't get any better than that! We are so proud of you Kamryn!! Each time Kamryn gets A's .. we reward her with a special day. Today we went to the mall and bought her some new clothes, ate on the patio at Cheesecake Factory for lunch, and now she's off at the movies. She continues to amaze us everyday!
This is Mr. Owen getting EXCITED... he smiles big, then rolls his ankles, and screams!!!
And Kamryn being silly for the camera.... she's never been camera shy!
Now for a cardiac update... We visited Dr. Stock (cardiologist) on Wednesday and of course, Owen impressed him with how well he's doing. Nothing new... Owen is in heart failure. We still don't have the antibody lab results back... it's only been three weeks!!! I've been in touch with UCLA and they are just waiting for results.
Owen's condition is so unpredictable. Two weeks ago, we were on the verge of admitting him permanently, placing him on iv Milrinone and listing him at top status for a heart. Today.. he's eating well, energetic and holding his own. We don't want to admit him and do the transplant too soon if he's doing okay at home...BUT, we also don't want to wait too long and have him digress to the point where we are running out of time.
Then there is the matter of his antibodies and those treatments. We PRAY that they are working and that the chemo is lowering them (even a little bit). My concern is that they are going to put the antibodies to sleep and then he'll get a heart and the antibodies will wake up and attack the heart. I doubt we have any other options at this point.
We're hoping that over the next few weeks, we'll get some answers. His lab results should be available soon (hopefully Monday). Then we'll head out to UCLA and get more answers. We'll be talking to LA about visiting a secondary transplant facility in either Seattle or Houston to decide when/how they do multiple transplant listings. We want to keep his donor pool as large as possible so that his chances of receiving his "perfect heart" is increased.
The reality of the situation hasn't really hit me yet. The idea of living alone, with Owen, in LA scares me silly. I can't imagine not having my rock of a husband or Kamryn to come home to each night. I don't know anyone in LA.. I don't know where I'll be living, any nurses or Dr.'s (although I'll get to know them quickly), or my way around the city. Oh.. and if a heart becomes available in Seattle.. we'll be jumping on lifeflight and moving to another city in a moments notice. On top of all those unecessary concerns, there is the medical unknown with Owen and his heart. It's all overwhelming, and so it hasn't really hit me yet, because I don't let it. Not yet.
24 comments:
I can't even imagine how over whelming the "what if's" are. I agree with you, don't think about it yet, not until you have to! Your girlie is such a cutie and she worked hard for her cute shirt! Cheesecake Factory is a great choice, maybe one day us local heart mommies should all go on a date there!!
Dang girl...you amaze me (and my mom). You've got the best attitude. You do such fun things with your kids- you're always reminding me to live in the moment and enjoy this time. We pray for Owen every night. Our oldest, Tyler, never forgets him. We will continue to pray for you all.
P.S. Your family pictures were absolutely beautiful!
Andrea,
I think you are right to live one day at a time & not let yourself become overwhelmed & consumed by fear. You are such an awesome mom & you've always made the right choices for Owen. Hang in there, Owen will be okay because he is amazing, just like you!
So Mr. O needs to come up here and give Mia a crash course in EATING. Why o why won't the girl eat?? Geez!!
Seattle REALLY? You know... Seattle has done a lot this year. I think they are on number 11 already! It's so crazy! I would love for you to come to Seattle! There are so many wonderful heart mommies here. We would come visit! We come up there like it's nobodies business anyway!
Mia totally started a trend here in Seattle. There was a HUGE gap and then all of the sudden after Mia six babies were transplanted. I personally would much rather be in LA where it is sunny- but if the call comes for here I will bring you lots of cheery things so the doom and gloom doesn't get to you! It was snowing here today for crying out loud.
That smile of his really is deceiving- he looks so healthy. I almost don't believe it.
We are praying praying praying!!!
Just like out little Lily girl, by looking at Owen you would never know his heart was sick and failing, granted Lily is not in heart failure but her heart is sick again, now we are just waiting...But we DONT think about it right now. We enjoy our days, knowing right now that worrying about it wont change the outcome. You are waiting for a heart, we are waiting for pressure changes signaling we cant wait anymore. Our lives are exhausting buy yet fufilling, even through all the crazy hectic, chaotic, sleepless, tearful nights, and days, I would not change this for the world. I think all heart parents would think the same thing. Because if it wasn't us...it would be someone else, it could be or friends, or family, and I wouldnt wish this path of life apon anyone even thought I dont like walking the path less travled...one day at a time, thats all I tell myself, one day at a time.
Jenna and Lilyana
ps...LOVED the pics of Owen...so adorable...and Kamryn...Way to go Girl..Congrats on the wonderful grades!!Keep up the great work@
Wow! That is so intense! I can not imagine having to face being alone. I can not believe either how big he is growing! That's funny he will eat anything, but tires out. We can not wait for him to get his new heart and have him able to do the things he wants to!
Tell your daughter that she is just as beautiful as she is smart. How blessed you are to have two such wonderful children. Our prayers will be with you on your journey with your little guy. It's amazing the things we go through in this life that scare us to death, but turn us into a better person in the process.
I know how scary this whole reality is right now. It all seems so unreal and you keep wondering if you are dreaming. Too bad we can't wake up with healthy, happy babies.
My heart breaks when you talk about being separated from the rest of your family. That is seriously (apart from seeing Beck suffer) the hardest thing ever. I will pray that you will get to stay close enough to be able to see your family. I will also pray for those anti-bodies to go away. We HATE antibodies don't we? Sheesh! Go away and don't come back is all I can say (for both of our little guy's)!
Hi Andrea -
I dont know if you will remember me. Our moms reconnected on Facebook and your mom passed along your blog link to me. I have been reading over the things happening in your life. I pray that things will turn out well and that your family will remain strong and close through it all. If you ever happen on down to Tucson again, please let me know so we can hook up.
Take care -
Trish (Chapman) Anderson
What beautiful 2 kids.
Alan was looking at the cute Owen photos giggling :)
HUGS for all you guys. I really hope that those antibody results come in soon and show that he's doing awesome. (Or um, I guess, I mean I hope his immune system sucks)
Just curious, would he have to do milernone as an inpatient or can it be supervised as homecare? I know all the transplant centers seem to have different policies.
We love owen!
Wherever you are...there are going to be people covering you in prayer! Give Kamryn a "high-five" from me!! That girl is going to probably become a doctor and find a cure for heart disease!! Give Owen hugs from his "blog-family" in Texas! :)
Many Blessings,
Amanda
I love your children...they are so beautiful! I hope Owen gets what he needs. A new heart would be wonderful! As for LA and Seattle, I have lived in both. LA is close to a dear family that I have known all my life. I am certain they'd reach out to you. As for Seattle, my entire family lives in WA and would rally around you! Especially my awesome aunt who lives in Seattle (she's only 27 so I consider her a sister).
I pray for you guys everyday and hope something miraculous happens soon!
Love and prayer.
Praying for sweet Owen. Just wanted to let you know that I live in LA (5 minutes from UCLA) and would happy to help however I can or answer any questions you may have about the area, etc. Know that there are people here who would be happy to help out! Feel free to email me if/when you would like to talk, need info, etc.
Stacie in Los Angeles
staciehn at hotmail dot com
Oh how I wish I lived in LA! That would be awful to be away for such a time. Little Owen's excited face makes me so happy!
Yay for As and the BUTT SCOOT!
Cxx
You handle all of this so wonderful...I admire you so. Owen is so adorable and by looking at him, you'd never guess how sick that heart of his really is. If you end up in Seattle, you let me know asap and I can be there in 3 hours to sit with you and help out in any way I can. Praying for you and great job Kamryn on those awesome grades!!! You should be such proud parents of those 2 :)
Feeling your pain all to well given the way HLHS has had our family split up for the last 6 mos (though not as distant as LA/PHX). Praying you'll keep on this journey as you have--looking just for the next step and not letting the enormity of the whole distance daunt you.
You'll find the team here at UCLA a tremendous comfort. Owen will be coming to a remarkable place with remarkable people.
Rolf, Trish and Rudy
www.rudysbeat.wordpress.com
That kid just melts my heart every time, sigh. You guys will have people begging to be your friends no matter the town you are in. I can't imagine how hard it will be, but you've got lots of people praying for you guys. I wish I could do more. Too bad OK isn't closer to LA, I would love to steal some time with Owen in real life. I've got such an internet crush.
I am a nurse at UCLA in the NICU and Pediatric Transport Team. Now you know a nurse in LA. If you have any questions about UCLA or LA in general, feel free to contact me. I read about Owen through Rudy's Beat. Joyce
I have no idea how you do it...I am in awe of your strength! The only thing I can tell you is that we'll be right there the entire time..thinking,reading and praying. I've come to love Owen like he was part of my family :) amazing how that happens!
Kamryn is absolutely beautiful!!! You go girl!!! Wish we had a Cheesecake Factory around here...I hear they are awesome!
WOW~this has to be really stressful for you and your whole family. my heart is really heavy for Owen. you are a great mom~i i hope the outcome with the panel comes back ok. if you have to come here to Houston, i live like 30 minutes away from TX Childrens' Hospital. i will take you under my wing and see to it that you and Owen are ok!! if you have to come this far, my friend. still praying for Owen's situation. til next update,
Your strength continues to amaze me. As always, keeping your family in my prayers and hoping that Owen will get his perfect heart as soon as he needs it. Jen
What a beautiful smile :)
Hi Andrea-
Thanks for sharing your heart with us ... and Owen's! Gosh, how I love your kiddo's! Thank you for your honesty as then we can know how to pray more specifically for you all.
My sister lives in L.A., and we live just 40 minutes from Seattle ... so we could come visit any time!
Lot of heart hugs to you as you continue in this process ... what a process of faith, right?
love, Jesse
Post a Comment