Tuesday, August 12, 2008

Fun with the SNS . . .

. . . NOT!! Ugh. This thing is awkward. I'm sure there is a learning curve involved here, but so far I am not enjoying it (I guess enjoyment was never the point . . .). Each time I use it I figure out some new little trick, and I still don't think I have it down pat. The tape it came with doesn't stick very well, so the tubing tends to not stay in place, so I had to find some other tape to use (which hurts when I pull it off, by the way). It's very difficult to get the tubing positioned just so at the nipple so that when Finn latches on, he takes the nipple and the tube (and I just read in the manual today that it's important that the tube be positioned in the center of his top lip and not the corner of his mouth - I figured as long as it's in his mouth, we're good. I guess reading the manual in its entirety before we started, instead of just winging it, would have been a good idea). Finn tends to fidget when he nurses until he settles down, so he gets his hands all wrapped up in the tubing and pulls it loose (so I've figured out that I have to coil up the excess tubing and tape it down out of the way). Plus I know he's not taking as much supplemental milk with the SNS as he does with the bottle (again, learning curve?). So I'm feeling rather frustrated at the moment.

Also, I weighed him first thing this morning and he was down an ounce and a half from yesterday morning - still up from his original weight on this particular scale a few days ago, but still, a loss is a loss, so that is discouraging. I'm starting to wonder if this kid is ever going to see 7 pounds.


One of Kevin's friends invited him over today, so I dropped him off after his orthodontist appt. this morning. When we got to the friend's house, the friend's mother came out to say hi. Last time we met, I was still pregnant. She of course asked about the baby, seeing that I was no longer pregnant. And I, of course, in my weird compulsion, blurted out the whole story in an abbreviated version, but giving her all the basics: the baby was born on July 7 at home, the birth went well, we thought he was fine, later had to rush him to the ER, he had major surgery the day after he was born and spent nearly two weeks in the hospital, oh and by the way, he also has Down syndrome. What is wrong with me? Why do I feel the need to pour all that information out to everyone who asks? Is it a coping mechanism for me? It is a way of testing people - "Here, I'm going to lay all my cards on the table and see if you still accept me/us"? I can't figure it out, but for some reason I seem unable to just smile and say "Everything's great!" and leave it at that.

This leads to another weird phenomenon - whenever I tell anyone that we have a baby with DS, I inevitably get told how special, lovable, and happy people with DS are, and how much joy Finn will bring our family. (This is usually based on the person's experience with either a friend's child who has DS, or an older relative with DS who is almost always referred to in the past tense, as in "My uncle had DS and he was so loving . . ." Which does not lend me any comfort because it leaves me with no choice but to believe that all DS people who reach middle age are dead.)

Anyway, I don't know what to make of all these assurances that DS children/people are loving, wonderful people who bring their families joy. I can't help but think this is a stereotype - I have no doubt that DS people have moods and bad days just like anyone else. And won't all of my children bring me joy? Am I extra lucky because in the lottery of life I scratched a Down syndrome ticket? Do people just tell me that to have something positive and encouraging to say? And seriously, how many of those people would wish to have a child with DS themselves?

I'm not trying to sound bitter. I know everyone means well, and maybe these comments are better than the alternative. If anyone were offering me condolences, I'm sure that would be much worse.


heather said...

The SNS is awkward at first and makes nursing not as convenient when out and about, but it did make it so Morgan was able to nurse and she used a lot less supplemental milk with that system. It made her nurse more effeciently even though I'm not sure why.

You are not alone on getting annoyed with all the well meaning comments from friends and complete strangers. I also got sooooo sick of the 'nice' comments from everyone. I like to let them know that Morgan must be the one grumpy ornery child with Ds because all though she has brought us so much joy (just like all children do) she isn't always happy and loving. I also got sick of the comments that 'she was meant to come to our family because we are such good parents'. I get mad at my kids just like everyone else and am not always patient, etc. I think with time and patience you get used to all the well-meaning comments and just smile and nod while thinking the person has no idea what they are talking about. I love reading your blog and following the journey. It goes by so fast. Enjoy your baby!

Laurie said...

I agree with Heather. We also get all of those comments and although people mean well, I dont feel like hearing them anymore.
Sorry to hear that the SNS is tricky. Sometimes I get super frustrated with the shield bc Dylan likes to flail about when Im trying to bf and he knocks the thing off a billion times a day.
Keep on truckin' Lisa! We are all just doing the best tht we can, eh?

Cindy said...

The comment thing still blows me away. First with multiples, then with large families, now with a child with special needs. It seems that people just have to say something.

Maybe everyone is trying to guarantee a better future for you and him. Trying to show a picture of a rainbow through your trying times - but they don't realize that your mind needs to be in the now not the future, because the future brings its own sets of trials along with the joys. Sorry to hear you are being burdened with all the comments.

Time flies so fast... try to relax as much as possible and as the other girls have mentioned, just enjoy your baby and family. HUGS!

Carla said...

I have no experience with the SNS so I'm of zero help or support there...sorry. You know what? I'm the same way about blurting out whatever is going on in my life when someone asks and I've only recently come to terms with the fact that is just who I am. It is okay to "spill the beans" if that is truly what you are feeling. So few people are honest these days that they may have a hard time hearing such brutal, gut-level info from you...but they did ask, didn't they?

Chrystal said...

That damn SNS? Check!
Blurting out TMI? Check!
Meaningless comments? Check!

Yup, still here and still identifying with you.