Ugh. I am just so over the NICU. As much as I complained about not being ready for Sam to come home the week of 12/6… now that he is not going to come home that week I am totally upset. I love the people at the NICU… but god… I am SO over it! I hate the parking garage, the alarms, the lack of control, the lack of privacy… all of it! I just want my little boy home. And now.. I have no idea when it will happen.
Sam is still not latching and breastfeeding. I know he knows how as he has done it. All he does right now is lick my nipple, kiss my nipple and fall asleep on my nipple. Until he is consistently eating off of me, I will not allow them to introduce the bottle. And until he is getting all his food form me or a bottle he will not be allowed to go home. So… we have ourselves a bit of a stand-off.
Of course, we also have to be free and clear of bradys for 5 days. Sam is having 2-3 bradys a day. Until he is brady free, we really can’t even think about taking Sam home. Ironic since Peter and I are taking our discharge and CPR class tomorrow. We scheduled it when it looked like we might take Sam home next week… now it just feels kind of cruel.
All of that is nothing compared to the next hurdle Sam (and his family) have to get through. The retina specialist came today to examine Sam:
The exam is not the most pleasant to watch. First they put drops in Sam’s eye to dilate them. Then they put in another set of drops to numb the eyeball. Then Dr. Britton pulls the upper and lower eye lids back and holds them in place with some wacky looking tongs. (If you look really closely at this shot you can see the eye near Laura is wide open). Then the doc uses a little probe and a beam of light to look into his eyes. I’ll be honest- I didn’t pay much attention to the doc- I kept my eyes fixed on Sam’s heart rate monitor. I figured the less I saw the better.
When the exam was over, the doctor told me that Sam has ROP in both eyes and will need laser surgery to give him a chance at saving his vision. While the success rate of the surgery is very high, there are no guarantees except that without the surgery Sam will go blind. Basically, the veins in Sam’s eyes are not growing correctly and if they continue the way they are, his retina will detach. (For detailed information about ROP click here) The surgery will take about 35 minutes per eye and will be done in the NICU on Thursday evening around 5:30. Sam will be sedated (as will I!). He should be back to himself the next day. My plan is to sleep in a cot next to his crib after the surgery.
All of this is really overwhelming and depressing. Just when we thought we were out of the woods and almost out of the NICU… well, you get the idea. I appreciate all of the emails, texts, and good thoughts I have gotten so far… keep ’em coming. I need the boost.
In the meantime… a double cuddle moment of zen(s):
Melissa,
Of course you are over the NICU, it’s amazing that you weren’t “over it” sooner. Our thoughts and good energy ate going out to little Sam fit his eyes on Thursday. So far, he has overcome every obstacle–he will once again rise to the occasion I’m sure.
Linda & Steve Goldfarb
Melissa and Peter, we’re so sorry that you and baby Sam are facing yet another set of challenges. The roller-coaster ride must be very hard for all of you.
Would like to talk with you; unsure of when to call.
Much love,
Betty (& William)