@mccartymchs oh hun, that sounds awful. You definitely aren't alone. Sounds like you need to gather up all your son's medical records and get a different doctor that actually listens to you and cares. I fired my son's pcm last week because he simply would not listen/acted like I was crazy any time I brought up a new concern. I was constantly repeating myself and he was giving advice that I knew to be wrong.
I know the specialists get overwhelming. We have had a few weeks where there was one appointment every single day. And I had to laugh at the "pretty much a hospital room in our house" comment. We're still there, but with feeding tubes rather than oxygen and monitors. I totally get how bizarre that is to come home with, and then you get so far down the road and realize that it's become kind of your new 'normal'. I was so scared trying to learn all the machines and how to take care of my son medically before he was released, but now it's just become routine. I was just so ready to have him home, in whatever condition, that I learned all I could so it could happen. But I'd be lying if I didn't say it was exhausting some days.
I hope that as you learn more about your son's condition, you feel more at peace with things. These little guys are strong, and you're doing the best you can for him. You're already doing a great job by being his advocate, never doubt that.

@techie_grrl I was so angry with them for explaining it like they did. Most of his doctors act like everything is my fault. I've been his voice since before he was born. When my water broke they told me he had no hb and wasn't moving. I was sent to deliver. I kept feeling him move and being only 14weeks they told me I was crazy. I refused to take any meds until they showed me. And BAM he had a hb and was wiggling around.
My sons journey sounds a bit like yours. I was in the hospital for 5 weeks before they made me deliver (csection) early. He had breathing problems from the get go and ended up eventually going home on oxygen and monitors. We pretty much had a hospital room in our house. The day after he was released from the NICU we rushed him back to the er and within a few hours he was in surgery. The hernias I kept asking the doctors to look for ended up being a problem and his bowels had protruded through both causing his system to reverse.
He had tort too. Hes super lazy (now I'm realizing it's part of his deletion.) But we are seeing his pt and now a chiro and massage therapist.
With all his problems I'm trying as natural as I can get. With over 10 specialists it's getting hard. It's so good to get a reminder that there are other mommas out there who have/are going through what I am too.

@mccartymchs this was in no way your fault, girl. Things just happen sometimes and we don't get an answer as to why. I went into labor at 33 weeks, no obvious cause why, and they were unable to stop it. My baby came and spent 79 days in NICU. I felt like it was my fault for so long, until one day I just realized that I cannot continue to blame myself and make myself crazy with trying to understand. It happened. He's here. He's got problems to overcome, but I'll work with him on them.
The way they explained the program sounds really rude! They messed that up, massively. The therapist that visits us helps to stretch him out, and then shows me exercises and massage techniques I can use at home to help him. He had torticollis (stiff neck, more or less) really badly and was unable to look to the left until I started doing the stretches with him. His head was a bit flat from laying in the NICU for so long, but even that has resolved itself since he's been home. It really is a good program if you can get past the initial screening process that they failed so miserably at discussing with you.

@techie_grrl they offered us that program but when they did they said "we will have someone come to your house and teach you how to handle your baby." And I did not like the way they said it. His regular ped suggested them too, in a much nicer way but we have dogs so he is seeing a therapist. His deletion causes delays. Speech, physical, ect. Also causes an oddly shaped head. Doctor kept telling me he needed a helmet and literally told me "you lay him down too much." I can't lay him down, like ever. Not even to get a drink. So I was very offended by it. Hes also got heart problems, genital problems, ect. Which is all from the deletion.
He was also born early. He was only 3lb when he was born. Once I got pregnant it was nothing but problems. Doctors telling me over and over again to terminate. Low levels, my water even broke when I was only 14w. Kind of makes me feel like it's my fault.

@hamccright77 thank you!

I always feel like it's better to know what you're up against, that way you can plan and get the help he may need. Look for early intervention programs in your state. My son was almost 2 months early and he's in an early intervention program through the state of Colorado that sends therapists to our home to work with him. It's a free service here and will go until he's 3 years of age or until he no longer needs the help. Your son may have more difficulties than others his age, but you as his momma already gives him an advantage. Moms are resourceful. I know you'll do what is best for him. 😊
**Edit** it's called SoonerStart in Oklahoma. It's through the Oklahoma State Department of Health. Try giving them a call to see if they can give any assistance. 😊

He’s adorable

@dontspankme thank you!

He’s a handsome little man! 💙