ROP… crap

I have been reading a lot of other micro-preemie blogs lately… they all seem to have similar posts that begin with “there’s good news and bad news.” I think it’s so common because that’s exactly what it’s like… all the time. Good news – you have a beautiful child. Bad news – he’s in the NICU. Good news – he’s hit some milestone. Bad news – something bad showed up on a test. And so on.

That said – what do you want first? We’ll start off with the good news – Benjamin is now 3 lbs 10 oz – and growing fast. He is slowly weaning off of the temperature controlled isolette and he has started his physical therapy (his first session was today and it went very well – the therapist was pleased).

Bad news – Benjamin had another eye exam today and they found severe ROP in both eyes (follow link to get a full explanation). Since it is aggressive they want to do laser surgery tomorrow if it advances any more it could lead to the retina detaching and could cause blindness. We were hoping this would be one chapter in the preemie handbook we’d be able to skip, but here we are. Hopefully the laser surgery works – if not they have other treatment options and are monitoring him closely.  So fingers crossed.

The other thing about reading preemie blogs, especially the ones that have gone on for a while is that you see yourself in the early posts – you think, “Oh, I remember being where that parent was – praying for kidney function, celebrating 2 lbs, getting off the ventilator…” But then you read the later posts and see possible futures. Returns to the hospitals, being terrified of the flu, surgeries, deafness, blindness, cerebral palsy, wheelchairs. And I tell you what – I know I try to keep posts brave and light, but I am really scared for Ben. Yes – I am so happy we’ve come this far and we will love Benjamin no matter what, but I pray so hard that he will come out of this problem-free. And at the same time I know that is really unlikely.

That said – if you read further in those other blogs – even with the kids with all the problems I listed and more – and you see their smiling faces in all the photos posted on their 3rd birthdays and playing in the park and just being a kid and growing up. It’s hard then to worry too much about it.


19 thoughts on “ROP… crap

  1. I have a wonderful son, a fantastic daughter-in-law and an amazing grandson. I am grateful every day that God has given me the three of you. Benjamin is perfect in God’s eyes and no matter what he will always be perfect to me. No matter how bleak things look, the sun always comes up the next day and the world seems so much brighter. Love you so much!

  2. Every parent worries, though some have more reasons to worry than others. Regardless, these are our children and children are the adaptable and resourceful beings on the planet. They unknowingly and cleverly compensate for any little thing that comes to them, better than any adult ever could. So whatever problems may or may not pop up might increase the challenges faced in life but will NOT decrease the quality of life. And the quality is what counts. Everyone faces challenges but quality is key. And being your child, child of Amy and Joe, quality is not at risk here. You will give your child a good life, come what may. And Ben will compensate, come what may, because he will have quality.

  3. You worry about his future because as good parents you want NOTHING but teh best for him and when obstacles are or may be in teh way it worries you more about his future and that is totally umderstandable! But with you guys as his parents whatever is in his future he will know you have his back! I hope that his laser surgery helps him and hope that he can beat out most if not ALL the odds of being a preemie. I love reading how he is gaining and growing and seeing his pics and will continue having him and well as you both in my thoughts; to me you both are VERY strong to be dealing with everything that has been happening and going on and I really admire that about you both. Ben is going to be great and do great with you guys on his side! : ) Continue staying strong I know it may not always be easy for you but you are doing awesome for him. happy Be-lated Mothers’ day Amy! You have earned that title in so many ways I can’t even explain! When I look at pics of you holding your son…it’s just PRICELESS those shots, I can ACTUALLY almost FEEL your love for him and it’s BEAUTIFUL! You are the pcture of what a real love a mom feels for a child she so always wanted! Ben will be great in your love as well as his dad.

  4. i’ve wanted to comment for a while but i’ve held off because most of what you are going through, i went through, but on Benjamine’s side of the equation (i wasn’t quite as premature but it was also 33 years ago so…), so earlier on i felt reticent to post “hey i pulled a lot of this stuff too, and turned out relatively healthy!” since i didn’t want to seem blindly or insensitively optimistic. that said, even though i haven’t really said much, you all are in my thoughts and i am wishing you the best. you’re all awesomely brave and strong

  5. Praying that the laser surgery is successful 🙂

  6. I am praying for all of you and realize how frightening it can be to hear all the possible things that can go wrong but kids are so resourceful. I remember the terrible roller coaster ride we had with Zayden and every other day the therapy people seem to have another problem to mention. All of the worries don’t disappear but with faith I could overcome many of them and Zayden is an awesome little boy who seems to be developing normally. I also was born too soon and that was over 65 years ago. I was born at 28 weeks and did have some eye damage from high oxygen concentrations.
    Praying for the best outcome. Love K

  7. what a heartfelt and beautiful post. we are rooting for benjamin and you both.

  8. Warmest hugs…. we Moms and Dads feel your anxiety especially keenly, and also know he is a special guy with amazing parents. Thinking of you…. of him… and how awesome all of you are.

  9. I can relate in some way with my little Lily, but I can firmly say that she continues to amaze me every day despite her ‘special’ heart. Ben has already proven to be amazing as are both of you. There are always bumps along the way- let’s just hope that you’re getting them all out of the way now!! Here’s hoping for ‘do you want the good news or the GOOD news’?!

  10. We are pulling hard for you guys. This was going to be a longer comment, but Kristina and Sandy said it best already. Benjamin chose the right parents in you two!

  11. Best of luck to all three of you today. Hang in there. Not easy to do I know. Hope to hear from you soon. Take care.

  12. Im still praying for all three of you everyday.

  13. I follow Benjamin through my good friend and Benjamin’s loving grandmother Edie. I always finish with my saying I will pass on the info to other friends and relatives, and of course we are all praying for his health. So the latest is that the eye situation is handled with prayers to St. Lucy. That was told to me by my sister-in-law who knows every Saint to pray to for each problem. So in your spare time (ha ha) just ask St.Lucy to check in on Benjamin. You- Joe and Amy will be able to handle anything with the gifts you guys have and Benjamin will learn how gifted he is to have such wonderful parents. Love and prayers to you all – Laurie

  14. We always keep Benjamin in our prayers. I still firmly believe he is a fighter and will beat all the odds, He is your little boy and he loves you both and nothing is stronger than the love of a child no matter how small. I am sure this is so difficult with all the ups and downs, but I truly believe God is watching over Ben and giving him the strength to go through all he has to so the road will smooth out very soon. Love to you all.

  15. So many people have already said it so well. I know that you both are going to love Ben regardless of any long term problems and while it may pose more challenges, that love, that mutual love, is what matters most. You are all so strong even if you don’t always believe or feel it. Keep fighting, keep praying and keep loving. It will get you through.

  16. Joe and Amy…nice to see Ben’s update, what a cutie. I have thought of all of you often. I will keep my fingers crossed regarding his eyes. Got your voicemail but the last digit of your number “warped” out. Could you please call and leave number again so I can reach you. Hope things continue to move forward for all of you. Linda

  17. I used to do the same thing when we were in the NICU…reading blogs of micro-preemies grown up can be absolutely terrifying. It can also give you a lot of hope too. I pray that you will ALWAYS look on the bright side and ALWAYS hope for the best. I know that Ben will be great. And the best part is, you are right, no matter what his outcome is, he will be alive and you will love him more than you could possibily imagine right now. Wishing you the very best with the laser surgery! You’ve been through so much, this is just a little hiccup!
    -Sarah Pope

  18. Hi. I started following your blog a couple of weeks ago and I just wanted to give you some light at the end of the tunnel… My 23 week surviving twin, now 3 years old, learned how to do the chicken dance tonight! Yes, he’s not all caught up and he has some issues and has overcome some unbelievable things, but he’s healthy and happy! You’ll get there too. Hang on since you’re still on the rollercoaster, but it will end for you too. Lots of hugs!!


    • That’s adorable, Jill- thanks for that. Your son sounds like quite the fighter! Glad to know the rollercoaster ends eventually. Looking forward to it!

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