Payson just came out of surgery at about 3 PM. The anesthesiologist said he did really well under sedation and the surgeon was happy with how things went. The feeding tube and central line are both securely in place. It will take the feeding tube about 6 weeks to heal, but they should be able to feed him breast milk over this weekend. They were able to inject the dye to see how far up the esophagus went up from the stomach...Unfortunately, it isn't the best case scenario and seems to be more the worst case scenario I mentioned last night. So, we don't have kissing tubes, we have two tubes that are far apart, but they don't know how far apart they are. In six (6) weeks, yes 6 weeks, they will be able to go back in and measure the exact distance and make a decision from there. If the tubes are close together just cm apart then they will allow the tubes to try to grow together on their own. If the tubes are far apart they will try to stretch them together over a period of surgeries until they can be connected. The surgeon did give us hope that once all the other issues were settled that he would be able to come home, but the Dr. who makes the final decision when asked dashed our hopes saying it would be just too risky. So, it looks like NICU will be home for at least 6 plus weeks. Needless, to say our hearts are heavy tonight as we enter into the weekend. Despite being reminded constantly how lucky we are we are very sad and disappointed with the news. The overwhelming sensation of balancing a sick child and our family at home for a long period of time has begun to stare us down. Since finding out the news I have begun to get angry at the pharmaceutical company that creates the drug I was on. Okay, I am not angry anymore I am PISSED! I am also finding it hard to sit in DuPont when knowing full well they performed the MRI while I was pregnant and stated that everything was connected and well leaving us completely unguarded and vulnerable to this shock we find ourselves trying to swallow.
I am sorry I can't really share more...I am a little overwhelmed by sadness and really don't want to talk/type at all. I just don't want to be reminded our nightmare will continue on indefinitely at this moment...
Again, thank you for your prayers!
5 comments:
I am so sorry to hear all this. I can't imagine what you are going through, but I know it must be horrible. I hope you know that everyone has you in their prayers. I know it's hard to think too far ahead, but ten years from now you will look back at this and find it hard to believe you went through all this because you will have a healthy young man on your hands. Take care of yourselves, and your family, so that you are strong later when he comes home.
Windsor...I'm praying, praying, praying! Just keep loving on that sweet boy and your other sweet kiddos and keep hanging one.
My Max was in the NICU for 3 months when he was born and everyone told me that life in the NICU was a rollercoaster and boy were they right. You will have a very bad day and then the next day will be a good one...hang on to those good ones and know that those will become more frequent and the bad ones will become less frequent. YOU CAN DO THIS!!! You're a strong girl with a great husband, great kids and great family...just hang on to that!
I read about you pumping and I pumped for the 3 months Max was in the hospital and HATED it! I know that's not the PC thing to say but I hated leaving his room and heading to the pumping room. BUT, I just kept reminding myself that it was about the only thing I could do for him. And I would go 4-6 hours some days and not pump and you know what...everything was fine. So don't you worry if you miss a pumping session...you will be fine and can just do it more frequently the next day.
Take care and know that you have tons of people praying and thinking of your sweet family!
Precious Windsor, I am sure your heart is heavy, but this came as NO surprise to God. And, for some reason, He choose to trust you and Todd with this responsibility and hence it will be a blessing to you and to many others.
Love you so dearly.......Aunt Gigi
Windsor, it can be so overwhelming. We were in the NICU with Maddie for 2 months and I remember well the feeling of 'how are we going to do this.' But thank God in our weakness, HIS strength is made perfect. Praying that strength carries you and sustains you as you face each day.
I agree with Jennifer, there are so many up and downs, but eventually there will start to be more good days than bad. We're all praying for ya girl. Payson is blessed to have such an amazing mama!
We will continue to pray for Payson and the rest of your family. I know first hand how exhausting it is to have a "sick" child, so I will especially pray for encouragement for you!
I have a friend whose baby was born with the same issues as Payson. Her daughter is 4 now and perfect! I am going to share your blog address with her and try to get you in touch with her.
Please take time to take care of yourself (without feeling selfish!) You will be a better mommy to all the kids if you are well rested and in a refreshed frame of mind!
XOXO
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