hydrocephalus
AlwaysSunny925
member
We got a call this morning from the neurosurgeon who will be placing Ryan's shunt. The surgery will be next week.
What we didn't expect is to hear that Aiden has hydrocephalus as well. We knew that Aiden had a grade III & IV bleed, but we weren't expecting hydrocephalus because for one, his head didn't grow the way Ryan's did. With Ryan it was kind of obvious.
So now we are looking at two shunts being placed probably within the next two weeks. We are a little sad today. These little guys never did anything wrong and they have gone through so much already. When will they get a break?
What kills me is that this is probably why Aiden has been so fussy. With babies in NICU you almost can't be a normal mother. You can't fix what's wrong your babies. It isn't as simple as picking them up and soothing them.
I know my babies will never be "normal". We will always deal with extra doctor's appointments, PT, OT, etc. But I can't wait for the day when I have my babies home and we can just snuggle and be a family. I'm tired of the NICU.
Thanks for listening.
Re: hydrocephalus
<hugs>
I'm so sorry. We didn't deal with all of the challenges you're facing, but I completely get it when you say you're sick of the NICU. It's just miserable sometimes. A lot of the time. And it sticks with you even when you're discharged.
I hope the surgery goes well for both of your little guys and that you're home with them very soon.
I'm sorry you are having a down day. Those days are hard, and it is hard not to be pulled into the darkness. There is still a lot of hope. Hydrocephalus can resolve. The shuts may very well be temporary.
I'll be thinking of you. Lots of T&P and Hugs your way!
We'll miss you sweet Debbie Girl (4.21.12) and sweet Cindy Girl (8.9.12)
BFP#2 3/16/11, beta 138; 4/12 Baby/HB DS born 9/10/11 at 29w4d due to partial abruption and PTL
BFP#3 8/19/13 Another boy! 17P, modified bedrest and Nifedipine helped us have a termie! DS2 born 4/19/14 at 38w5d.
Oh, J
I'm sorry you're having a tough time. The NICU sucks. But the good news is that things can turn around quickly. Before you know it, your boys will be home and you'll be asking what happened to your two pound babies.
Hang in there. You know how to get me if you need to talk. I'm more than happy to listen.
I'm so sorry to hear that news. You and your family have had such a hard journey in the NICU. Even though my experience wasn't quite like yours, I can completely relate to how it feels to just wanting to be "normal" again and have babies home. It's very easy to get burned out after so long. I remember also feeling how unfair it was and how much I wanted to be able trade places with them and take away all their pain.
If it gives you some hope, I have a co-worker who had preemie twins who are now 5 years old. One of her girls had to have a shunt placed. She's had to to PT and OT for a while and is now in a regular kindergarten class because she passed all her entrance tests and did not need any special ed. She's basically a normal healthy kid now.
Peanut Butter and Jelly!
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I'm so sorry. I remember that feeling of just wanting to snuggle my babies and it is so hard.
((hugs))
{{hugs mama}}
It is so hard having a baby in the NICU and not being able to fix things or soothe them. But having their mommy there with them is so important, and you are doing an amazing job just being there with them. Hang in there. Lots of T&P for your sweet little boys.
Oh sweetie, that is tough.
It's very hard to be a NICU mom and be so out of control with eveything.
Sending lots of hugs and prayers your way.