This is my first post on Preemie parenting but I've been around MDC for awhile.
Anyway, I'm having trouble finding anyone who can relate in real life, so I'm hoping there are others here who have had similar experience?
I had my twin boys at only 25 weeks gestation earlier this year, and they both had a rough start...they were in the NICU for 5 months before being discharged home with me.
Noah is doing relatively well, all things considered. He is on room air, takes a bottle well (neither boy could learn to breastfeed, despite ALL efforts including buying a Lact-Aid...they just couldn't figure out that breast = food )Anyway, he has a bit of reflux, but otherwise, he's in pretty good shape.
His biggest problem is low muscle tone--very low. He's so "floppy".
Ryan, on the other hand, has so many issues going on it's hard to keep track. He's oxygen dependent, and looks like he will be for at least another six months (they're 9 months old, 6 months adjusted). He has severe reflux, and is almost always in pain from it despite his meds. He goes crazy from teething--crying, fussing, poor guy. He's also always constipated, and his GI system seems to just be all messed up from being a micropreemie.
He also has low muscle tone, although not quite as severe as his brother.
So, obviously we are in early intervention services through our county.
I'm being told to do things to help them develop their muscle tone and strength (which they ARE really delayed on) that are so 100% in opposition with what my heart wants to do and what my gut tells me that they need EMOTIONALLY and attachment-wise.
The OT wants them to practice holding (and sustaining) their own bottles during feeding time. She wants them supporting their bottles themselves with both hands equally. Because of the nature of what she wants, it's nearly impossible for me to do that WHILE holding them close/snuggling with them.
So I'm faced with deciding whether to bond with my babies during mealtime (some of which they are already missing out on because of not breastfeeding ) and potentially "stunt" their motor development (and I think it probably WILL stunt them, based on what has happened with them thus far)...or facilitate their motor development, strength, and compensating for low tone, but feeling like I'm neglecting the emotional/attachment needs of my babies (and for me).
I'm just so sad and frustrated. I feel so stuck between two worlds. In general, the "early intervention community" around here is not AP friendly...or at least they don't see it as AS important as accomplishing goals/milestones/etc.
Another example: In order to effectively keep up with all of my children's medical needs/medications/oxygen/neb treatments/occupational and physical therapy "homework"/excercises/etc., they really need to be on a "schedule". Especially with twins, without a schedule, I'm finding that it's so chaotic during the day that I never end up getting done what really needs to get done.
If I had it my way, I'd just play with my babies, snuggle them, laugh with and read to them, feed them and put them to sleep WHENEVER they needed/wanted. My instincts, at this age, are to follow the babies' lead.
But by doing so, I'm not able to manage time as effectively as if we were on a "schedule". Things are sort of "willy-nilly" here, which IF THEY HAD NOT BEEN MICROPREEMIES, I would be fine with.
But they were micropreemies, and they are struggling with many things that are classified as "delays".
I'm just feeling more and more hopeless about continuing to let them set their own schedule, and feeling more drawn to "scheduling" them, despite how wrong it feels, because otherwise I feel like their OTHER developmental needs are getting neglected.
It's similar to the idea of saving money. If you have a BUDGET (schedule), you are going to be able to plan better and things will go smoother, and you will naturally be able to spend less and save more. If you DON'T have a budget ("willy-nilly" unscheduled day), you probably won't end up saving as much because you're not keeping as good track of your money.
The same concept applies to our day. I feel like, without a schedule, I'm not keeping good enough track of all the things that need to get done, specifically, I'm not sure I'm devoting as much time as I should to working on their Occupational Therapy goals. This makes me feel like a terrible, irresponsible mother.
On the other hand, I really REALLY don't believe in CIO, and in order to establish a workable schedule, getting them to sleep during set times is pretty critical.
BUT I DON'T WANT THEM TO CRY IT OUT.
Sorry...I'm just feeling frustrated, alone, and so beyond overwhelmed with the responsibility of raising these fragile babies in the best way possible.
I know I'm doing the "best I can" but...I guess I don't KNOW what is best. I don't want to support their attachment needs at the expense of their motor and strength development...I don't. I think that's a big mistake. These guys aren't even close to sitting up yet, and their 6 months adjusted. That's a problem.
On the other hand, I really don't want to focus so much on "working" them that I miss out on their baby-hoods.
I guess having a schedule would be IDEAL for us right now, because then I could plan "fun/snuggle/play time" and also plan two or three times a day that we focus on therapy/neb treatments/medications/etc.
But I don't have a clue of how to get them on a schedule without crying it out at sleep time.
Help??? Or at least support/been there-done that.
Thanks. Feels good to get this out, even though it's a novel.