He's still butt-scooting all over, but he exhausts easier than last week. We're hoping it's just another "down" and he'll get over it soon. He has good weeks and bad ones. He usually pulls out of it. We know that at some point he won't be able to pull out of it and will continue to go downhill... that's when we know it's time for transplant. I'm pretty sure this is not the time.
Let's just pray that this is a bad week and he'll pull himself out of it. I've been slowly increasing his Captopril and I've gone from 16mg/day to 30mg/day. He is supposed to be on 60mg/day. Maybe all the extra meds is the problem and it's too harsh on his little tummy.
Owen has been puking several times a day. I took this picture after I cleaned it up and was getting the tub started, for the second time today. It breaks my heart to see him so sad.
After the tubby, he CRASHES from exhaustion.
No matter how he's feeling, you can ALWAYS get a smile out of him. We go to cardiology on Wednesday, so I'm hoping he feels better before then. Meanwhile, we will stay inside and relax. 
37 comments:
While I have been reading (lurking) your blog regularly for quite some time, I have never commented on here- but that picture of him today...oh, that picture just broke my heart. I am praying prayers over him today for peace and a break from the nastiness he is feeling. It made my heart sink to see that tear-stained face that is ready to be well. And it made my mommy heart sink to think of how your mommy heart must feel seeing that face on your own baby. I am praying for you and for Owen. Praying God's blessings, goodness, peace, and miracles over your lives. I can't wait to see what He has in store for this little guy's life.
Emily
that middle picture is devestating. poor Owen...
I am like Emily, lurke but I have commented once. However, those pictures of dear sweet Owen break my heart. Wish I could give him (and you) a big hug. I hope he bounces back to his smiling self very soon.
I also click on some other blogs listed on yours. Bless Lindsey; I hope the damage is not permanent.
Denise in Woodstock, GA
Poor Owen and poor mommy. It breaks my heart to see him like that and as a mom, I know it just tears you up inside. Praying.
I nominated you for an award on my blog. Check it out!
It's hard when you have to be so tough. It'll all be worth it one day. I hope you had a happy birthday a few days ago.
I know that me being pregnant makes me more prone to crying but that 2nd picture is just a heart breaker. I'll be praying this is just a down week.
So sorry that Owen's having a 'down' day. Our own little HLHS boy, Charlie, is sick often too, and it's so hard on him. Hope Owen feels better soon - it's hard to see your little one feeling rotten. With love and hugs from across the pond X
HAPPY B-DAY LADY!!! Woo hoo!! YOU'RE 30!! Are you guys getting out tonight? I sure hope so. That little own face is breaking my heart. I think I have high blood pressure from all things that go on that are just confusing to her. Mia is quite the puker too- she is a talented puker though. She always pukes on a nice shirt I just put on, or in my hair right after I did it.
I am so sorry Mr. Man is having a down day!! However, You can't have a down day today- IT'S YOUR BIG DAY!!! I will eat a cupcake today in your honor :-) you're welcome. ;-)
Sending huge birthday and heart hugs your way!!
OK- I realize that your birthday was few days ago... he he. I read your last blog today thinking it was yesterday :-) woopsie.
So, I hope it was a fabulous birthday and I sorry about the lame denial. There has to be something out there for him. There has to be.
That second picture makes me want to cry at my desk. That sweet little face, sigh. I hope he gets to feeling better. Zach and I still say a prayer for Owen each night. We'll keep doing it.
I also love your blog because we read a lot of the same blogs. I can just click on yours, get my Owen fix, and see if any of the others have updated. You have done all of the work for me. Thx.
I am so sorry Andrea that Owen is feeling down. He looks so big in the pictures, but so sad in that one, it broke my heart. I sure hope he gets on his upswing soon and maybe it's the heat affecting him as well because it is HORRIBLE outside! I pray for you all everyday and that the Lord will continue to strengthen you and comfort you as you wait and watch. I can not wait until Owen has his perfect heart!
Love, Keisa
the sad picture breaks my heart.
Seems like he has classic Captopril side effect sysmptoms, especially if he is taking other meds or aspirin.
I hope the Doc can figure out just the right dose to keep him active, yet happy. Sorry it's
SO hot to add to the problem.
{happy feel better hug}
Oh poor Owen! That picture made me cry. I'm so used to seeing him smiling and giggling...and hope he's back at it SOON! :)
I am so sorry for your pain and frustration. I hate working the system. They need to give us respite care just so we can deal with insurance and state agencies! Let alone, cook, clean, appointments, meds, therapies, and oh yea, our other children! You have been at this longer than me and I admire your positive attitude and strength while admitting the reality of this SUCKS! Hang in there.
Awww, little Owen:(
We don't see the sad side of him often on the blog because he's always got that huge smile on his face! Poor baby boy I want to hug him & you too...hang in there he always seems to bounce back as you said!
By the way I'm loving the pictures your (new?) camera takes!
Awww... I, too, have been a lurker in your lives and that second picture has me crying. Poor baby boy. I wish I could love him up and offer his wonderful mommy a hug of support! You are in my thoughts and prayers! I, also, will pray that this is just a down week and that things will start looking up again!
God Bless you!
That picture just breaks my heart. It doesn't seem fair that such a sweet innocent little one year old should have to go through so much. I'm sure it's so hard for you to see him go through this also, what an amazing mom you are. You and Owen are in my prayers!
So sorry to hear that Owen is having a hard week and still dealing with the reflux issues. I am praying for him, and hoping that he makes a turn around very soon!
Poor boy. That picture makes me SO sad :( I wish he were feeling good ALL the time.
Prayers being sent his way :(
That second picture made me cry. Poor little guy. I wish he did not have to feel so crummy. I know as a mom it must tear you up. I will pray that this is just a dowm week, and he will be feeling better soon.
(((Owen)))
Christine in Atlanta
I also have been following your blog for sometime. I pray daily for you and your family. Please know that I think of you guys daily!! Owen is a fighter and is such a blessing.
God Bless Your Family,
Brandy
Andrea, I think that I have posted once before but just wanted to know that we are praying for Little Owen. The picture of him crying just broke my heart. I hope that he is feeling better very soon!! jamie
Oh this picture just breaks my heart!!! I am sending many of prayers your way!!! I know God has amazing things in store for Mr. Owen--GREAT things!! You are forever in my prayers
Love-Hugs and Prayers-
Tiff
P.S. being from TX I sure did experience that 107 yesterday!!! WHEW!
That is the saddest picture-made me want to cry! Hope he feels better soon!!
Those tears just broke my heart! I wish I could make it all better for you guys...I know you've been throught hat feeling multiplied by 1000 tons of times.
Praying he feels better soon and continues to give you tons of smiles!!!
Love and prayers!
This post made me feel two things: First, sadness that there are so many kids like Owen who have to feel pain and discomfort. Second, it made me long a little bit more for Heaven, when none of us will face sickness.
I just love your little boy to pieces and am praying hard for him to pull out of this not-so-good week.
Jesse
Oh Girl! I am a little teary right now. Owen has the best smile ever. To see him sad, has really thrown me for a curve. Grace said a prayer for him tonight, as will I! xoxo
So sorry Owen feels yucky. He is still precious as ever, even with that "after pukey" face...splotchy, sweaty, so sad and completely worn-out. Made me tear up seeing him like that, he is such a happy guy all of the time. He's in my prayers Andrea...hope you're birthday was great and welcome to the club, althought I've got a year on ya...
Please pray for Pablo.
www.getwellpablo.blogspot.com/
Oh he is so adorable! You need to put how much 60ml is! That is 12 teaspoons of meds for just that one! Most people don't understand the ml thing. Poor guy, I'm sorry he is having a "down" week. Kylie does that to, down and up, down and up. I find myself soaking up the good days as much as possible! Whaoooo you really are desert dwellers. I can't even handle our 90' days up here. YIKES! Praying the days get better and Mr. Owen starts feeling better. What a sad face :( It really is so hard to see how fast they get exhausted. The simplest things wear them out. Owen is just so stinking Adorable!
It breaks my heart PERIOD!!!
Oh how I have been so busy, sorry for not stoping by to check on the little guy for a while:) I have missed him.
I hope things get better for that little sprit. You are in my prayers. with love
xoxox
"The measure of a HERO is the streght of their HEART!"
Give that cute boy a big kiss for me!
That picture of Owen absolutely broke my heart. He nor any other child should have to go through rough times like that. Brought tears to my eyes. My prayers continue to be with you all.
Oh, Andrea - I have to agree with the many other comments that the picture of Owen's tear stained face just breaks our heart. I can't imagine what you go through each and every day. I admire you so much and continue to pray for little Owen daily.
I also have been reading your blog (ok I am obsessed with reading heart baby blogs). I am a nurse who worked in Open Heart Surgery at St. Joe's in Phoenix. I met Baby Jersey Anderson and her family there and took care of Jersey through her surgeries. I always love to see how sweet Baby Owen is doing. He is so beautiful and such a blessing. If you ever need anything at all, please don't hesitate to contact me. I would love to help you in any way possible. I can't imagine what your family has been through so if you ever need a break or a date night with your husband, I am happy to watch your little ones free of charge. Take care and may God continue to bless baby Owen and your beautiful family. Kelli
Hi, I too read Owen's blog to see how he is doing (ok, I am obsessed with reading heart baby blogs). I have never met you but I found your blog through a little Angel named Jersey Anderson. I am a nurse, I worked in Open heart Surgery and helped care for Jersey. I am amazed with your sweet baby Owen and the progress that he has made. If you ever need a break or a date night with your hubby, I am happy to help in any way possible. Heidi Anderson has my phone number. I can't imagine what you and your family have gone through. I pray that God continues to bless Owen and your beautiful family. He truly is a beautiful gift from God. Kelli
Post a Comment