It is honestly no exaggeration that I worry every day that the boys are going to die. If we are not at the hospital and the phone rings, we just want to hear that they are alive first, then we absorb whatever bad news follows.
Doctor; "we are worried about his breathing and his blood pressure so we have changed his ventilator settings and gone up on his dopamine"
My mind; "phew, nobody is dead"
I can't speak for Aly on this, but after each call I take a tiny peek into the abyss and test myself about how I would feel if it was the worst case. Then I look away again and go back to whatever I was doing (usually sleeping) because I can't bear it. Right now I am in the room with them and I can see the machines that confirm with their squiggly lines and big numbers that the boys are ok. Even if an alarm is going off or something is flashing, I know what to look for now to convince myself that they are not going to die from this one.
All that said, at times like now, when there has been no life threatening changes for almost a full 24 hours, I start to look into the future. Then I look away again and go back to whatever I was doing.
You see, the future is going to be hard for both boys and maybe even impossible for Charlie. You can call me a coward (or encourage me to "be brave") but I am scared and, for now at least, I am choosing to take it one day at a time.
(D)
Dear Aly and David, I have been following your blog since this weekend when I was with Kate and she gave me your address. First of all, please know that you and Charlie and Henry are in my mind and heart every day. I cannot imagine how their precarious health impacts your life, your hopes for them and what the future might bring. There is an old saying in New Orleans: " Don't dig up the past, don't tote the future."
ReplyDeleteYou have both so beautifully modeled how to live in the present, as difficult as it is. Each child is precious and as parents and grandparents we embrace them. Whatever comes, I hope you can take some comfort from your many friends and family members who are here in the present to support you. Nancy
I must admit that I have been refreshing the blog all day - just hoping for a post with news that the boys are okay. I find myself worrying about them constantly. Y'all are so brave. Thank you for sharing your struggles. Charlie & Henry are very fortunate to have such wonderful parents.
ReplyDeleteI'm a friend of Jamie Hand, and when she shared your blog, I had to look, as NICU twins are always close to my heart.
ReplyDeleteMy twins are almost two, now. One of them is severely disabled. (Not from prematurity--he has a very rare chromosomal disorder.) We almost lost him several times during his first year (108 days in the hospital). His brother has been fine since his release, minus typical baby stuff.
Raising special kiddos can be very hard and feel very isolating. Although our circumstances are different, if you need someone to talk to about G-tubes, equipment like suction, O2, pulse ox, etc at the hospital or at home, feeling torn between decisions about quality vs quantity of your babies' lives...I am here.
I am so very proud of you and David and the strength you are exhibiting through this terribly difficult time. Charlie and Henry are truly fortunate to have you as their parents. Please remember there are many, many friends and family members praying for you -- and we're here whenever you need us.
ReplyDeleteLove you HF. One day. One minute. One breathe at a time. Sending all of you strength and courage. xoxo
ReplyDeleteAin't nothing wrong in feeling scared Fitzy. Its not cowardly - its being a loving human.
ReplyDeleteThings that seem impossible right now can often be totally normal years down the line. One day at a time, good plan Fitzy. Px
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