A is out of surgery and he is stable. They had to remove a part of twisted bowel that had perforated and was causing his major problems.
We are still waiting on the test results to see how this was caused, but the surgeon believes that it was just a fluke thing, rather than a sign of Cystic Fibrosis. We aren't out of the woods on this one yet, as the test has to come back, but before surgery we were told the likelihood of CF was greater than 50%. It felt like our world was unraveling.
His little body is lying there limp, but we now know that he is fixed. He's going to be able to poop with the help of his bag (ostomy?). They are estimating that he may be able to eat by tomorrow, and that we will be able to go home in about two weeks. In 6-8 weeks, we will have to come back and have some more procedures to finish putting his intestines back together.
Right now, A is on a breathing tube and lots of pain medication. We can't hold him right now, but will be able to do so tomorrow. My mom and all of my sisters are still on their way. E's dad is coming back with some supplies. We're not out of the woods, and we are still anxious to hear the definitive "NO" on the CF, but we are doing better than we since we arrived last night around 11pm.
Please continue to keep us in your thoughts and prayers.
Sunday, April 20, 2008
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55 comments:
Our hearts and thoughts are with you three.
- Kim & Peggy
Thank you for the update - it must be unbearable not to be able to hold your little boy. While you're not out of the woods yet, it sounds like A is in good hands. Thinking of you!
I can not even imagine how you guys are doing right now. I am sending lots of love your way and praying for A. I wish we could all come and sit and hold your hands as you wait for the healing.
xoxoxoxo
Oh Sara, my heart sank when I read your first post and I am so glad for the update with better news.
We are praying for all three of you. May you feel God's peace as you wait for healing and answers.
love and hugs
My son had open-heart surgery at 4 days old, so I know the fear and anxiety you're feeling. I'm thinking of the three of you and hoping this is all the intervention he needs and you can get home with him soon!
My heart is breaking for you guys. I am praying for you all. I really hope your baby boy gets healthy soon. Hopefully he will not have CF. I actually read a really good blog about a lady who HAD cf! Let me know if you wnat to read their blog. It's very uplifting.
Thank you for the update. I will continue to keep the three of you in my thoughts and prayers. I have been thinking of your family all day.
Thank you for the update, you will be in my thoughts and prayers until he is back in your arms safe and sound!
Thinking of you.
how horrific for you, may your beautiful little one recover quickly and go on to lead a very long, very healthy very uncomplicated life.
may both of you have more than enough support to help you through this.
thinking of you
Thank you for the update. Continuing to hold all three of you in my heart. Much love.
Oh sweethearts, I came over via Dr. Grumbles, and I am praying for you all.
*hugs*
thank you so much for updating in the middle of all of this. i am so relieved that a. is stable and i am confident that this is not cf and he will heal perfectly well.
i hope that this scary time will pass into a distant memory that will be one of those stories you embarrass him about when he's a teenager.
in the meantime, h and i send our sincerest prayers your way.
Right there with you - wishing, hoping & praying that all is well and he'll be safely back home asap.
Big love.
Oh wow you guys, that is so scary. Poor little A! Our thoughts and prayers are with you and baby A for a speedy recovery.
You are in our thoughts.
Hello there....I found you through Sara (Dr. Grumbles) and just wanted to say I am sorry for what you are going through right now with your precious baby. I also wanted to let you know that although I pray the CF test comes back negative, I'm a (healthy!) blogger with CF (diagnosed at 6 months old), and am available if you need for questions, experiences, etc.
*Hugs*
Sending love and hugs your way. What an ordeal--hold tight to each other--you three will all emerge okay and stronger on the other side.
xoxoxo
My thoughts and prayers are with you all. Sending thoughts for a speedy recovery for A. xoxo
omg. just checked in and not the kind of news i was looking for. we will be thinking of you all and sending our waves of positive vibes.
you all are in our thoughts... I hope you get good news on the test results.
I am sending lots and lots of prayers!
I was happy to see that you had your precious little boy, and sad to see today with him having to have surgery. Know that I am thinking about you three and I hope he feels better soon.
All of you are in my thoughts today.
I'm praying for A. And all of your family.
You've been in my thoughts all day; I'm so glad to hear that he is doing a bit better, and will likely do better still.
oh ladies. I am thinking about the three of you. I do have a little bit of information though.. the "bag" is called a colostomy bag. It is done to reroute the intestines through the wall of the abdomen. It is almost always a short term solution followed by a surgery a few months later to restart the colon. My dad had one - and was fine afterwards. I certainly hope that the tests bring good news..
I can't even imagine what you are going through. Our thoughts are with you.
Oh my, your little guy has to go through so much, so early. I hope he knows how many people are pulling for him. I'm keeping your family in my thoughts. Take care of each other.
Delurking to say..
My son is also in the nicu and he too had bowel surgery six weeks ago, he is still in the nicu because of his prematurity, not the stoma. He was "stoned" for a couple of days and then he was fine. We too are waiting to be put back together. please feel free to email me if you need to talk or have questions. baxterdrvr@aol.com
Kim
Dear E n S and little A, you are of course in our thoughts. We are sending all the positive energy possible your way, and good healing thoughts too. Hopefully this experience will just make A that much stronger from the fight. Let little A know that we are on his side, and when you have the opportunity to hold him, send him big hugs from us.
Love always,
Auntie Cheryl
I've never posted to you, but I have read your blog off and on.
I know there is not much anyone can say to make you feel better. I'm so sorry to hear about your little son and I will definitely keep you in my prayers.
The NICU is a scary place, between my two kids I've spent three months there. Try to take care of yourself.
I'll keep you guys in my thoughts, and thanks for updating.
Oh shit ladies, we're so sorry. Poor little man. We're holding the three of you in our thoughts.
Sending you all of my love, light and strength.
Please keep us posted.
Rosany
I'm a long time lurker and just want to congratulate you on the birth of your son. My partner and I were NICU moms - our daughter was born with esphogeal atresia and needed surgery within 12 hours of being born. We knew while my partner was still pregnant, that our baby was going to be whisked away from us when she born, but it didn't make it any easier. I am saying prayers for your son and although you don't know me, extend an offer to give any advice, thoughts, or hopeful comments for what to expect while he is in the hospital.
we are all thinking of you.... we are praying you are all going to be ok. I cant imagine what you are going through. thank you for updating....
You are all in my thoughts!
Wow. I'm glad things are looking up at least a little. Sending you love and strength.
Dear Little Family,
No words can express how sad/tearful, yet hopeful/optimistic I am for you. I’m thinking of you. Call if you need anything, seriously. I know you are/will be surrounded by so many family and friends now, but if later you need a second wave of help, let me know. That’s what annual leave is for!
So glad that things went well with the surgery. Hopefully you are able to spend some quality time with A today - I'm sure his moms' snuggles would definitely make him feel better.
Hoping you have some answers soon, and that A continues to get stronger every day.
Many thoughts and prayers for you and sweet lil A.
We love and are thinking of all three of you.
I am sending positive thoughts to you and your new family. I can't imagine the heartbreak you are going through right now, but just from looking through these comments it seems that you have a wonderful group of very supportive people to help you through.
Sigh of relief for now.
Hoping he is ok and it is not CF.
Thinking of all of you. *hugs*
we are praying for you!!
Hang in there. I hope little A makes a fast recovery. We will all be praying for you guys.
E, for as long as I've known you, you've been overcoming things and redefining greatness. S, I've known you less long than E, but you, too, are an overcomer. A is going to get through this with flying colors, and I sincerely hope it's the worst thing he ever has to go through.
In the meantime, you know I'm here if there's anything I can do.
xxoo
I'm sorry that you and poor A. have to go through this right now. We are absolutely praying our hardest for a quick recovery and positive outcome.
Sending all of our love and hugs.
Holly & Lois
Sara and Erin, you can count on our thoughts and prayers--we are so sorry to hear about what is going on right now with your precious son.
You definitely have a whole village of people surrounding you--both with you and out here in cyberspace who want to help. If you need anything, just ask--just like you asked for our prayers. We pray for healing and peace for your whole family. -Monica (and Susanne and Danny)
Sending prayers and good thoughts!!
Sending you tons of positive thoughts. We're hoping and praying that little A recovers quickly so you can bring him home and start your lives together.
I am really happy to hear that he is stable and you all continue to be in our hearts and prayers.
E-S,
as most have said we can't even imagine the feelings and emotions that are running through your minds and bodies.
We LIFT YOU UP in our prayers.
A-welcome to the world! I am sorry that it hasn't been a great road for you so far, but your moms and family and friends are all there, embracing you with all we have.
love to you all.
OH please know you are in my thoughts and meditations. Much much love. I am so sorry.
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