It's amazing how wide open his eye is. Post op his ptosis seems gone! Some of the stitches have started melting, he looks really black and blue, but not that swollen. The first night was great. He acted just like himself, and we were nervous about the bandage coming off, or him touching it in his sleep, so we put extra tape on it. He really never touched it except for when he first woke up from anesthesia, so they quickly put socks on his arms.
Wednesday morning we went back to the doctor, who removed the bandage and the one stitch that was holding his eye closed. It looked pretty gross, but not as bad as I expected. He continue to keep up his great mood, and was extra cute (not while he got the bandage off or stitches out, but before and after!). The main stitches, as per above, do not "come out" but melt away. Four layers of stitches.
He is really being so good. At 17 months old, when I say "time for cream," he puts his head back and closes his eyes as best he can. His eye does stay open quite a bit when he sleeps, but teh doctor says that's normal, and will take about a year to get to a more closed level of closed, but will never really close fully.
Thank G-d he came through this so well, and seems to have worked so well, and he really seems no wortse for wear. Yesterday I thought he was a little more swollen than the other days, and I was a bit nervous, but he had never really swelled more the way the doctor said he might the fiorst two days post surgery. By last night the swelling was down.
I calmed down a lot after I was speaking to someone whose kid had cardiac surgery ( I did not mention my son's surgery).
We came home about an hour ago. He seems great and so himself. The harder part is probably now, making sure he doesn't pull off the bandage, going back to the doctor tomorrow and putting cream on the area starting tomorrow.
So it is done, and he really appears to be ok. Now lets hope it worked
I need to call the surgeon tomorrow. I saw him in April, and I don't know that I can do this without speaking to him again. I have a lot of questions, many of them just logistical
I'm trying to understand why I am allowing the fear to be so consuming. Is it so that as a parent, if G-d forbid something bad happens, I feel as though I accounted for the possibility as opposed to just putting my kid in a situation without thinking it through? Could it be because wallowing in fear let's me feel that I am doing something, as opposed to just waiting?
These reasons sound silly, but I think sometimes we glom onto an emotion so that we feel something so that a situation that is personally so momentous not be relegated to the mundane. Which it is, for the doctors and nurses, and orderlies and secretaries and insurance companies and all the others we will be in contact with next week. They will wake up and go to work, and prep dinner, grab breakfast, fight with their spouse, make plans for the weekend, and just generally have a normal day. Our day will be markedly different. That's what so odd. All these people will surround us, and be a part of our experience, and they will never remember it.
And we will never forget it.
That is not to say that they are callous or cold or even that they are not good at what they do. But they do it everyday. They come to the hospital every day. They deal with pain and loss and triumph and failure daily. We, thankfully, do not.
So this is just a jumble of thoughts and ramblings when I should be in bed.
We're about 10 days away from the big day, and my nerves are really frazzled. First, it seems as though his crease is developing in that droopy eye, but even more than that, I don't see the droop. It's scary, because I see it in the mirror, and in pictures, but otherwise doubt is creeping in. Every time he struggles away from me when I'm changing him or dressing him I worry about the post op care. Every time he snuggles into me because he's unhappy I wonder how many days/weeks I will spend with him at my breast. Mostly I worry about his personality changing because of all this. I've heard that kids who go under anesthesia do change their personality for a few weeks, I just hope he goes back. He's so young that I wonder if a two week change could be permanent. The real issue, is that at the end of the day this is kind of elective (though insurance is covering it as an in network medical procedure...yaaay!).
I did get some clarity over Simchas Torah. We were in shul, watching the dancing, and the woman I was standing next to glanced down at my husband holding my son, and said "so what's with his eye?" When I said he was born that way she was surprised, she asked because she thought I'd say someone bumped him with something or he bumped it himself. It didn't bother me, in fact it made me feel good that people notice. As I said, I just don't see it much. Later hubby was sitting with the kids, and a guy who was someone's guest walked up to my hubby and first gave a whole bunch of disclaimers before identifying himself as a pediatrician. The he asked if our pediatrician was guiding us as what to do about our son's eye, espescially since he is trying to see from that eye by lifting his head, which we wouldn't want to be a habit. So hubby said yes, we had seen a pediatric opthamolgist, and that now we were going to a specialist in Columbia Presbytarian, and he would have surgery in less than two weeks.
I don't know how the man felt afterwards, but I felt fantastic, and was so happy that he said something. So happy. So at least some of the edge has come off, but I guess I can expect to feel this way for the next few weeks.
I was right about worrying about this particular thing . And the more he walks now, the more I think he will put his hands on his hips and ask me why I did this. He is so cute and so sweet I just wish I felt sure that I was doing the right thing.
I wasn't so unsure until I set the date. Now I vacillate daily between does he really need it, and wow he really needs it. But I just worry if he needs enough to warrant the general anesthesia, and if G-d forbid something goes wrong, and it's made worse or something happens to him is that something I could live with? I look at him at his cutest, which is just him being him, and I think: What are we going to do to him. I pray that he comes through this unscathed (except the part they are supposed to scathe), and that his sweet delicious disposition does not change. I think there may be a few more of these posts before November.
We went to the Occu-plastics doctor on Thursday. There was no real examination, he just took a picture, measured his eye, and discussed which of four surgeries he was most likely to need. Then he discussed when it should be done, and why, what the results would be, and the post op protocol. At the end of the meeting I went to the office to "check out," at which time they gave me all the pre-op info. I chose a date, and now it's all set.
The doctor explained that he likes to do it between the ages of one and two, the recovery is better and easier. My uncle (an Optometrist, but his thoughts really seem spot on) feels it goes beyond that, and beyond the social aspects of having a droopy eyelid. He feels that as a kid gets older he will keep compensating, and will hold his head a certain way, and stand a certain way because he wants better vision from that eye. If the surgery is done earlier he won't get into certain "habits," really ways for him to see better which may be harder to "undo," developmentally, if he were older.
I don't want to do this in the summer, with the sun exposure, and just the whole nature of the summer. It can be limiting in that there needs to be some care taken post surgery, and wouldn't want the other kids to be held back. The time that makes the most sense is November. Things are usually calm and quiet that time of year, with everyone back in routine, it's just easier to just recover, without a lot of other things going on.
So now this surgery is months away, and I won't be seeing the surgeon again I guess until the day of surgery. I do intend to call with some questions and hopefully I will be able to speak with him.
This is so strange, because now it's set, but it is so far away. I'm mostly nervous about the general anesthesia, but the whole things is just nerve wracking. Everyone in the know says do it, but it won't produce perfection, and adds other small problems in its wake. he'll be more prone to conjunctivitis, and his eye will probably never fully close. I guess that's likely better then what he has now, but it lets a little bit of doubt worm its way in.
That and the woman who told me today "oh, my friend's daughter had that and it went away on its own." MY uncle said that's not possible, certainly not congenital ptosis. So I guess that's not REALLY bothering me.
Luckily, I spoke to someone else whose kid had the surgery over 10 years ago, and she was very calming to speak to. She told me once it's done I won't even remember all the fear and to-do that went into the run up to the surgery.
The Ophthalmologist went well. His vision is good, and the eyelid is not getting in the way of his vision, though he is very farsighted. That's normal in babies, and she said that if this was his "prescription" and he was three years old, she would put him in glasses. So hopefully he will outgrow the farsightedness. The doctor does not think we need to worry about lazy eye, because he lifts his head to compensate, which means he wants that full vision and wants to use that eye, so it probably won't become lazy.
We have an appointment next week with the Ophthalmologist who is also an Occu-Plastics doctor, and we will discuss the droop, and surgery and timing, and he'll probably do more tests on his vision and the effect of his eyelid. I didn't make that appointment until a few days ago even though we had been to the doctor at the beginning of April. And though we've been talking about "doing surgery" for awhile, making this appointment gets the ball rolling and apparently it scares me terribly.
Now it's really real.
I have weird fears now. Fears about choices, and fears that we'll make the wrong ones. Really the hardest thing in this situation is the inevitable questions from other people that will be phrased and posed in ways that will make us feel both negligent, and incorrect in our choices. I often wonder in these situations if anyone ever gets it right, or is there always a "better" doctor, or a better path, or another thing that can be done. Does anyone, barring keeping completely quiet about medical situations, ever get away with just following the path set by the doctor they picked? And does anyone ever pick the right doctor? or is there ALWAYS someone who will say "Oh, you should have used so and so, he's really tops."
I should have posted earlier, but when the panic passes so does the urgency. His vision is fine, he is such a yummy little boy. Albeit one with a droopy eye on one side. It doesn't seem to effect his vision at all, but the Opthamologist thinks I should wait and see if there seems to be an issue when he walks. My uncle, an Optometrist, seems to think the earlier the better when it comes to doing the surgery to lift his eyelid, lest that eye become lazy. We go back in April to the opthamalogist, so I'll discuss the timing of what is now considered 'cosmetic" versus medically necessary surgery. I see that he compensates by lifting his head when he wants to look up, since lifting his eyes does not give him the full range of vision in the droop eye(medically called ptosis)
We're about a month away from a follow up appointment, and I have seen marked improvement. Not hopeful wishful improvement, but real, real improvement. Definitely at twelve inches or more he can see and follow and track. Closer is a little harder to gauge, but I don't think it's there yet. It'll come, God willing it'll come. I'm sure of it.
My greatest fear has not come to pass, thank God, and hopefully never will. However, a more short term fear has indeed occurred. I thought that by verbalizing it, or at least writing it, I would be better about it. Specifically, I didn't think I would be so hopeful, and hovering waiting to see some progress.
There's definitely an advantage to it, and the advantage is I spend more time playing with my adorable cooing baby. I just wish I didn't wish so hard for something, and just could chill and let it develop. I think I may see some progress, as far as my face, if I keep enough distance, but I'd like to shake a toy in front of his face, and see him follow it.
The doctor told me exactly what I suspected she would. Let's wait.
Waiting is good if you think waiting will get you the outcome you'd like. She said she saw "nothing remarkable.' Not normally what you want to hear about your kids, but in this case, I'll take it, in fact, I'd say it's a good thing.
Is there a small piece of me that has a bit of doubt? Yes, but it's really very small. I'm pretty sure that from a distance he can focus and even track, but like I've said before, I don't want that to be wishful thinking.
I definitely feel relieved to some degree, and I just want him to get to a good point with his vision, I'll just have to be patient.
Tomorrow we go to the doctor. I am very thankful that we didn't have to wait until the twenty second of September. I hope this is a whole lot of nothing, and just something he will quickly grow out of, I find myself scared.
I'm afraid. I want him to see this beautiful world, and I want him to navigate it well.
My biggest immediate fear? Tomorrow brings no real resolution. That we end up with a lot of wait and see. After that? I'm afraid I'll want to see progress so badly that I'll interpret things that aren't anything into something. I'm afraid that I will keep my son at arms length, because of the feelings of fear he conjures,that I will perceive him differently, I will love him, no doubt, but each interaction, diaper change, bath, feeding, holding, playing, will be so weighty,and imbued with such longing for him to be ok. Of course I will accept him and love him no matter the outcome, I will just need to work on dealing with him, without constantly worrying that "he's still not..." or "when will he?" Hopefully none of this will be necessary, hopefully they will diagnose him as delayed, and give me a timetable.
I am afraid, but I'm hopeful. And I'm not afraid of that.
We prayed and we waited a very long time for our little boy. Thank God we have six beautiful girls, and we love them to pieces. we were blessed with a son 9 weeks ago. He is healthy happy and cute, but he doesn't track objects with his eyes and he doesn't stay focused either. I want to keep track of this process, for me, and maybe one day my boy.
Have you ever prayed, really really prayed for something, and then you got it? It's the most amazing feeling in the world, to have something in your life that you wanted so much, but was pretty much out of your control to get, and God smiled upon you, and said yes. You feel loved, and you feel like your prayers really mattered, and you wonder what you really did to deserve it. Was it the prayers for someone else, two years before? Was it the charity you gave despite your own economics changing? Sometimes no is for the best too, but I'm glad I wasn't faced with needing to accept that. The only problem is, I wanted this so much. So much, and I have him, but I'm terrified of losing him.
I noticed at about seven weeks, that he didn't seem to hold his gaze, and that he didn't follow toys when moved across his field of vision. But he did smile, socially, meaning, on cue when I spoke to him or smiled at him. Could he learn that if he didn't see? He also has one eyelid that is very "droopy" and may, at the beginning at least have covered his one pupil, which I would assume would affect his sight. At his 9 week old well check up this week, I told the doctor about these issues and she did seem very concerned and suggested I go to a pediatric ophthalmologist. I was planning to go anyway about the droop eye, so now I'll go for both.
So now we wait. Until Wednesday. Thank God it's not that long of a wait, though originally they gave me an appointment for mid September and I pushed for earlier so they are squeezing me in. I did some research and I'm hopeful that it's just a delay in vision. I spoke to my brother in law, who is a pediatrician, and he told me not to worry.
Not to worry. All I do is worry. I can't look at him or hold him or play with him or feed him that I don't worry. I vacillate between can he see?, and I think he can see. Am I convincing myself? Well, he smiles and coos at all the right times, but I left him on my bed the other day for five minutes and when I came back he was smiling and cooing at himself. That's a good thing, but if I'm holding out hope that he is doing it on cue, then that kind of smashes that theory to pieces.
I'm almost afraid of him. But mostly it's that twinge inside of me when people coo at him, and look at him expectantly. They mostly can't tell. Inside I scoff when a toy is placed in front of him, but truthfully, I think he can see, I think he may not know how to look. I spoke to someone who just told me of two kids she knew with this problem and thank God they are fine now.
I feel like I'm grasping at things, just waiting for a sign that everything is OK, and he'll be all right. I think he can see, I think maybe he doesn't see well. He's a baby,he is nothing BUT potential, and we will work to achieve the fullest he can, whatever that may mean for him. I just want what is best for him, and I want him to be OK.
Wanting the best becomes another, "issue." The doctor. I'm using someone local, who I vetted through a referral agency, and she gets high marks. However, I have a few people telling me I MUST use this other person who is "the best." As my husband notes, "are there numbers on that?" Is it a cultural thing hat it always has to be the guy who's known as "the best?" To me, this is what money is for, good health care. So if insurance will only cover one opinion and I feel I need to go to this other guy. I will. But why do people do this? Do they think it makes others feel better? Because it doesn't. My daughter had emergency surgery on a broken elbow when she was three, and after the fact I was told I MUST take her to this other guy, to make sure it was done right. After the fact. Why do I have to second guess my primary guy? If they suggest someone why do I have to feel like I need to question them? Whatever this doctor tells me, I can choose to go to the other one after wards. It's just frustrating when you have a worrisome problem, and people tell you you are not handling it right, and you're left with niggling doubts about whether you are doing the right thing. Even though what you are told was suggested by a doctor, who has the best interest of your child in mind, and doesn't receive any kind of kickback. Plus, I don't need referrals, so it's not like insurance will blame the primary office for who I choose to go to. Why? Why? Why? these questions are not helpful in health care ad post construction situations. Second opinions. They've been around forever. I'd rather have a second opinion, then blindly (excuse the bad choice of words) follow one guy, because if he's "the best," who do you go to after wards?