Could you nurse your special needs child?

[Anonymous]

OP again. Our ped also noted the low tone when I mentioned it (though not before), and it's easy for me to see now that I understand what it looks like.

Most of the people we are working with have taken a "wait and see/there's no point in worrying now" approach, but it's very hard not to worry, as I'm sure many of you understand. Whenever I read about something, they always stress how important it is to start early with intervention, so I simply don't want to miss an opportunity to help him if we could. It's very hard to know how interventionist to be vs. How much to just let things go.

It's also very frustrating to see this OT regularly and have her tell us to do more and more exercises with DS to help his development (stressing tummy time, work on head control, roll him over, etc.). It's wonderful to get these exercises now, but it's also hard not ti hear "there's a problem" whenever she examines him and focuses on a new thing. He is ot as alert and talkative and playful as my friend's baby of the same age, and although I know each kid is different, it's hard not to worry.

Moreover, I feel like the experience of having a healthy baby I have no serious worries about has been taken away from me, but in it's place, I have no diagnosis, and miost people think he is just fine. It's hard to feel some of the natural grief and anxiety about this and not have any support mechanisms or be able to really talk about it, since he seems fairly normal. Of course, I love him to pieces and am excited to "show him off" to friends and family and be excited about his development, but there is a naagging worry that he has a greater chance than other babies of having some type of condition, based on his symptoms and problems so far.

[Anonymous]

Op, I totally understand. I had my son at 35 weeks and I feel exactly the same way. There may be issues preemies have in the future, it's scary, and I feel robbed and worse, terrified for him. I get it. It becomes easier once they start becoming a little person. My son is six months now and some of the more accuse terror is ebbing away. I know I will love him no matter what and respond the minute a problem actualizes. I think you will slowly become more aware but less anxious. Remember, too, this is all going to play out over years. There may never be any kind of problem, and you will mourn this baby time you spent sad and anxious. It's so hard, but it really is about being in the moment.

[Anonymous]

^^^ accute. I also think you are going to have to let this go, for now. There is no clear diagnosable issue, and hopefully there will not be. I would think, based on what you have said, that you might find a genetic screen the most helpful for peace of mind -- there are no other real issues I would see, I know you have mentioned CP as a concern, but I don't really think that fits in with the issues you are concerned about -- certainly not the small head size. I know my son had to have a blood draw at some point, perhpas you could have a screen done at that time.

[Anonymous]

I'm the PP who used the SNS. I do not like the sound of this OT. No matter if there is a problem or not, she shouldn't be making you feel like something is wrong. I don't care how much experience she has. I would stop the sessions with the OT...you can continue doing a few minutes of those exercises but then just relax and be a mom. You can revisit a new OT at the 6-8 month mark just to see how he is doing...or a dev. ped. Early intervention is not all it's cracked up to be. Yes, it's important, but at this age, I'm not sure anyone knows for sure what works and what doesn't. Give your baby opportunities to move, reach, grab, sit, roll in a variety of ways, and to study your face and see your reaction to things and to him. Enjoy your baby! If you can pump it will give you some peace of mind re: nutrition. If you can't, that's OK too. Best wishes.

[Anonymous]

OP, keep us posted. It sounds silly, but I've been worried about you. I know what its like to freak out when you think there might be something wrong but have no idea what it is.

[Anonymous]

Hi everyone. This is OP again. 16:43, thanks for your concern and kind words, and thanks everyone else for your thoughts.

DS is now 14 weeks and doing quite well. Just this week he seems to have "woken up" a bit and is more interested in looking at us and smiling, grabbing for toys, etc. That, of course, makes me feel much happier about things!

We saw a ped GI and were prescribed Prevacid, but he got really, really upset on it -- maybe from gas. I felt that it wasn't helping him at all and was making him just as upset if not more, so I took him off everything, and he is doing just fine. The reflux is still there but seems to be getting better than it was.

He still seems quiet to me but is cooing (albeit not a lot), and the low tone is still making his head a little wobbly, but he is still doing very well in terms of milestones, so I feel positive about that. The nursing is still not working, and with his "freak out" week last week, I didn't even try the SNS. We met with the LC again at 12 weeks, and he did remarkably well with the SNS -- staying very engaged on the breast and drinking well. I'm not sure that will ever translate into BFing well without it, but it was encouraging. I'm hoping to try again with the SNS this weekend and am hopeful it may lead somewhere. If not, I'll try to EP as much as possible, but I'm not sure I can do it for as long as I would ideally like to give him breast milk.

I also contacted EI and will have someone evaluate him, but I suspect there won't be much they'll be able to say at this point. He is probably a little behind on motor skills, but it's pretty minor. Nonetheless, I think it may make me feel a little better. The OT has been helpful, and we'll see how things go in the future -- I might consider stopping seeing her if it isn't useful in the coming month.

[Anonymous]

OP here again. I should add that I am still having a hard time relaxing about him, but that may be more about me than about him.

I am an anxious person by nature, and I had really hoped to be a more calm mom, buying into the whole "it'll work out," holistic route. In the first month after he was born, taking the "calm" view ended up with him in the NICU and later with him not getting enough when we were BFing. I think that made me paranoid. I want to relax, but it seems like he isn't the type of kid that benefits from that, sadly.

[Anonymous]

OP, I have followed all 3 of your posts (your concern about low tone at 7 weeks, your concern that DS may have CP at 10 weeks, and now this one), and in all of them you say several things: that your DS is meeting milestones, that the ped says there is nothing to worry about, and that you may be pathologizing DS's symptoms. I know you say that you are a worrier, and I would like to gently suggest to you perhaps you would benefit from talking to someone, if you aren't doing so already. It seems to me that you are taking some things that are pretty normal and making them into potentially life-altering issues. I speak as someone who was extremely anxious with her newborn-I really wish I had gotten some help at the time, it would have made the first few months more manageable. Sleep deprivation will do crazy things to your head, and when faced with fairly run-of-the-mill problems, they can suddenly seem like major issues.

[Anonymous]

OP here. 10:41, thanks for your concern! I have been seeing a therapist - started when my frustration over BFing not working got out of control before any of these concerns popped up. It is helping, but i find therapy very hard -- am frantically upset about something the night before but in a good mood the next day and therefore don't think the issues are a concern to discuss with the therapist because the seem minor, only to become bigger concerns again later. Ugh.

DS certainly has some issues, but I know it's impossible to know at this point if they will turn out to just be his own unique little challenges or if they will be symptomatic of something more. Dealing with that unknown is the hardest part for me! It's also hard to see that he is a bit behind his peers due to the low tone and not really know how that will play out long-term.