Conflicts between my instincts and developmental recommendations

[claireb]

Hi everyone,
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.

For example:

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.

Claire

[MeepyCat]

Re: the SCHEDULE. I would really want a schedule to make sure that I was keeping up with meds and treatments and OT, but it doesn't have to be iron-clad, or awful.

This is going to sound a little flip, but really, here is (IMO) how you put your baby on a schedule without going nuts or CIO.
Step 1: Observe. Make notes. When does each baby wake, eat and sleep. For a few days, just jot this stuff down, than take a look and see if you notice patterns. Keep in mind that these patterns are more likely to look like "awake for three hours in a.m., then nap" than "wakes at 6, naps at 9".
Step 2: Reinforce what you've observed by starting to offer food a tinch before you would expect them to be hungry, and starting sleepytime routines a little in advance of when they're usually tired.
Step 3 - MOST IMPORTANT. DO NOT SKIP THIS STEP OR ALL THIS WORK WILL BE POINTLESS: Announce to anyone who cares that your babies are on a schedule.

And when the schedule falls apart (because it will) just smile and assure those people that babies change so fast, and teething or an ear infection or a growth spurt can just rip a plan to pieces. If you behave to these people as though the deviations are a special exception (even if there's some special exception or other practically every day) they will be more sympathetic.

In regards to feeding time as OT: I hate it with you. Eating is so important.
1. Your babies need to get as much nutrition as they can with as little effort as possible right now. The last thing you want is for either baby to eat less because it's more work.
2. When you snug and cuddle the baby during a feeding, you can be reasonably assured that the contents of the bottle are actually being consumed, and not being uselessly dribbled down the baby's chin while he struggles to hold the bottle up and keep the nipple in his mouth.
3. With two babies in the house, a policy of one-on-one cuddling while feeding gives you an invaluable opportunity to relax and observe each child individually, which will help you connect with them and help you notice any new issues or developments as they arise.

It may be that the therapist thinks she is saving you time by overlapping OT with meal time, but let her know that you'd like an alternative plan.

The other thing that jumps out at me is the question of whether you have help. Do you have help? Can you get some? Ideally, you'd be able to clear everything off your plate except the babies and taking care of yourself. That ideal may be hard to achieve, but I feel like maybe a cleaning service and some grocery delivery aren't out of the question. And maybe a mother's helper to come over a few times a week? Can EI hook you up, or do you belong to a church or anything where you could ask about possible available teenagers?

[pregnant@40]

I have never been through this (no preemie), so my input isn't that helpful. But I wanted to say that I believe it's very, very important for you to feel competent and secure in your parenthood. If the recommendations are overwhelming & you are not able to mother them as you choose, I would find some middle road. Mothers should never ignore their instincts. It sounds like you have wonderful access to professionals who provide evidence-based recommendations & have experience w/ this population; I wouldn't discount everything they say. But the recommendations need to be adapted to your particular circumstance, rather than the other way around. Your feelings of bonding definitely come first, absolutely. The professionals you deal w/ are not in your situation & do not have to do the tough work of balancing medical advice w/ a real-world situation.

So I would make a list of things that you are completely unwilling to change, such as your feelings about CIO. And then see where everything fits into that picture, and decide which recommendations you will and will not implement. I would even discuss this w/ the OT/PT, and describe where you're not willing to budge, and ask for alternative methods to make certain other aspects work. See them as your allies (a well of research/training from which you can tap), but at the same time remember that you're the mother & final decision-maker. There is a problem when all of the treatments interfere w/ the bonding relationship b/twn your babies & yourself.

[RiverandJulie]

RE: holding the bottle. My 11 mo (8 1/2 adjusted) cant hold his bottle on his own ( we use glass, and they are heavy....but still) and he has no developmental delays. Also, as they get older, cuddle time is harder to find, since they are way more interested in being active. I have a wild man and sometimes bottle time is the only time I have to cuddle with him. So I think that there are other ways to work on holding things than a forcing them to hold a bottle.

As far as sleep schedules, I have a friend with twins and she said the sleep schedule really helped her emotionally and made her a better parent. I can see a much higher need for a schedule when you are dealing with two.

One thing you can do to help with the schedule is: follow what the PP said about finding their somewhat natural schedule. Then work with it, find the one thing that really makes them fall asleep (babywearing, stroller, rocking...) then every day at around the same time, do it!


Im sorry to hear that EI is not great in Arlington, I am not far away in Loudoun and have really liked our EI specialists.
Good Luck...sounds like a challenging time you are going thru.

[Crunchy Frog]

Just wanted to say that I've been following your story from the beginning and am amazed at your strength.

I think that you are going to be able to find some system that works for you, but you will probably have to go somewhat outside of the local EI establishment.

Can you do some intensive research into more AP friendly approaches to Early Intervention? I'm certain that there must be more than one philosophy out there. Can you do your own research and then work with the local people on some sort of custom program that takes your particular needs and parenting philosophy into consideration? Is there someone there who will work with you rather than just trying to dictate to you?

I for one would definitely not do the bottle thing. I am certain that there are other equally effective ways to build up muscle tone without detracting from such an important source of nurturing and even maintaining adaquate nutrition.

I can't give you any input from personal experience as we were relatively late gestation and just overall very lucky. I just think that there has to be more than one approach out there.

Oh, and you are an incredible and fantastic mother, and don't let anyone tell you any different.

[baby duck]

I didn't have twins - so my experience was very different - but my DD was a 28 weeker and weighed 1 lb 8 oz. She was in the NICU for 3 mos, and they did have her classified as a micro (though I know some would argue she wasn't because she was a 28-weeker). We did all the early intervention stuff and I found that she was a happier baby if I kept her on a schedule. We definitely did not CIO, but we had a bedtime routine and stuck to it. (I never wake a sleeping baby, though - if she was asleep and it was time for whatever - too bad). Many of her meds had to be done with a feeding or a half hour before, so doing a feeding every 3 hours or so was important.

Admittedly, I didn't do everything the therapist suggested. I learned to smile and nod and sign the paperwork and carry on. When it comes up in a meeting, it was "she still can't do that yet." Seriously? When they are five, they will be able to drink on their own without you holding a glass for them. DD is four now, and receives services through the school district for speech. She has major anxiety issues, which affects some of her other development, but she's doing great.

Just keep reminding yourself that their schedule is going to be vastly different than that of a baby born near their due date. My DS was born after DD at 37 weeks. He is two years younger and has actually hit some milestones before she did. Literally. For example, he recognized emotions in others about a month before she started doing so. I think he "taught" her. He surprises me every day by doing something I'm not expecting because our experience with DD was so different.

Hang in there, momma. It does get easier.

[ssh]

As serious as all your DCs issues are the stress hormones from CIO cause so much neurological damage I think your instinctive avoidance of CIO is correct. The emotional and attachment needs of babies effect their cognitive and emotional development so much that I agree with a PP that feeding your babies is more important at the moment. Also you can develop a schedule around your babies natural schedule after observing when they eat, sleep and other things. MeepyCat had excellent advice about scheduling.

[cristeen]

I dont have a preemie, but wanted to say that my abnormally strong/tall term 13 mo just started holding his own bottles in the last month. After he started, i actually put handles on his bottle, and a month later has no problem w it. But at 6 (or 9) mos, he just didnt have the coordination.

[babygirlie]

My preemie didn't hold her own bottle until 17 months.

I have been told by several people (OT included) it is a natural instinct to follow the child's inclination when they are delayed. That the mom's tend to sleep feed whatever on the child's needs not what the "norm" says to do.  I JUST got on a schedule and it wasn't too hard but until then she slept when SHE decided to, she eats when she wants, what and how she wants and I was happy like this and it worked out. I have that priveledge of being at home and only having one though.

Her teacher wanted her to put her toys away and bottle when done. Well... she JUST learned to hold her bottle and putting things away are so not in her league right now. So I nodded and smiled and frankly I think the teacher forgot about it. Or maybe it clicked that my daughter needs to learn to put a block into a bucket first before something so advanced as putting her bottle away when done!

Something the autism observer said that the teacher did not. These are merely SUGGESTIONS. You do not have to do ANYTHING we say. YOU'RE the mom.

[fazer6]

Just doing a bit of stalking here.

Now then Claire if they *had* to hold their own bottle otherwise they will not develop then what would have happened if they had been bf? Would you have been advised to switch to bottle so that they could hold it? I doubt it very much.

There is an alternative to help encourage a bit of development. I saw a programe about a ukranian family who all turn into strong men. They do it by putting little weights on the wrists and ankles of their babies, they then go onto more weight training later but that's irrelevant.  What about getting a local knitter to knit up (or get some sewn) a little tube, ribbed so it's stretchy and with buttonholes along so it can grow with them. Put pastry beans (you know the ceramic ones you use to blind bake a pie case) or anything slightly heavy in the tube. Slowly bitby bit increase the weight. Maybe put in a bell so it's interesting and encourages movement. Basically every time they scratch their nose or move at all they are slowly doing a touch more exercise and building more muscle tone. It's happening all the time they're awake so it doesn't matter if you miss outon one of your scheduled OT sessions.

And gijve over with the terrible mother talk. You have two live boys right? Your goal each day  is to make them smile and not be a 'perfect' mother. We will never be perfect mothers who do everything right.j It's impossible. You wn't make the right choice every time. If you heard of a mother who did eveyrthing right and was perfect I bet you'd wonder what was wrong with her.

[davidah]

Hi there,

I didn't have preemies (or twins!) but both my children were in Early Intervention -- DD#1 for severe hypotonia, following birth trauma and a NICU stay, and DD#2 for a chromosome disorder. It sounds to me that what you most need is help! Can you enlist friends, Church members, friends of friends, etc. to come and "play therapist" with the boys? With DD#1, who was very, very, very floppy, we had to spend a lot of time dangling a toy from a ribbon and enticing her to kick or bat at the toy (because otherwise she never moved). We also did a lot of supported tummy time (lying over a blanket role). She hated this, so we had to do a lot of distraction (singing, dancing, etc.) to tolerate this for short amounts of time.

I think you should focus on the feeding and nurturing and try to get other people to come in to do some of the developmental exercises. I used to volunteer once a week with a family whose son had autism, playing games with him and interacting with him to give the family a break (he's now in college, BTW, and I'm still close with the family). They had placed a notice in our synagogue newsletter looking for help and I responded to the notice. I'm guessing there are a lot of people who might come and help if you asked. (and you can set guidelines, like NO cold/flu symptoms, no smoking ever, change to a clean T-shirt when you get in the house, etc.)

I also know the conflict between therapy goals and parental instincts. In general, we have found that the occupational therapists were more "in tune" with our children than the physical therapists, who always seemed more aggressive. Our first OT through EI was wonderful and never pushed DD to the point of tears -- she said that babies couldn't learn when they were upset. So I think it's perfectly fine -- and our job even -- to balance therapy goals with our children's emotional needs.

When DD#2 was about 16 months old and not bearing weight on her legs, I brought her once to a famed physical therapist. He was great but then we tried a follow-up with one of his staff. The staff member was so aggressive and DD was so upset that I decided that I would rather have DD happy and never learn to walk, rather than subject her to that approach. (DD did eventually learn to walk at 25 months).

I also think that you should "bottle nurse" and snuggle for all the feedings. Those times are so short and precious as a Mom -- you and your boys deserve all the snuggles they can get. Attachment is GREAT brain exercise. I would completely disregard the "hold their own bottle" advice. You can do plenty of other things to stimulate tone. We similarly had a developmental pediatrician tell us that our 2-month old should learn to "self-soothe" and NEEDED a pacifier. I ignore doctors when they give parenting advice instead of medical advice.

Good luck and enlist help!

Davidah

[APToddlerMama]

I just have one child, who was barely preterm (35 weeks), so I can't say I entirely understand your situation.  I have worked in EI though, and my son has special needs so he receives OT, PT, and speech (he's 2.5 years).  I can really relate to the conflict between meeting emotional needs and meeting developmental milestones.  There just isn't enough time in a day to do all of the "homework" that EI wants me to do.  I have really struggled with this, but ultimately came to the conclusion that meeting emotional needs trumps developmental milestones.  This is not to say that I don't work hard at the developmental portion, but it comes second to emotional needs.  I don't want to end up with a high schooler who is a great football player but who has no attachment to his family, is insecure, lacks confidence, etc.  I want an emotionally healthy kid.

 Your babies are young.  Many many many kids are not on a regular schedule at all.  Maybe instead of having things so scheduled, you could try to squeeze in the exercises before/after a diaper change, or before/after they eat....just make them part of your routine.  Having worked in EI too, there is generally no way to do all of the things that you're asked to do, especially with two with multiple needs.  You don't have to feel guilty about that.  There is only one you and you can only do so much.  As your kids get older and start sleeping more regularly, it will get easier to fit this all in.  They will be *okay* even if you don't get to everything the therapists suggest. 

[havengirlsmama]

I haven't had a chance to read other's replies, but I wanted to throw a quick response on here since I also have twins (28 weekers, now 16 months actual/13 months adjusted). I am very much into AP, and it can be difficult to balance that and preemie needs, but it definitely, absolutely, 100% can be done! Both my girls came home on apnea monitors,a and one was on 1/4 O2 for the first 6 months she was home. They were both on pumped EBM for 4 months, and when I ran out of time to pump so much, they had to start Neosure. I was able, miraculously I might add, to get them both to latch and breastfeed as well. It took months, but they are still breastfeeding. The guilt and the turmoil of not being able to exclusively breastfeed was with me for a long time. Reading your post made me think I could have written the exact same thing.

The first thing I want to say is go with your gut, go with your instinct. It will make you a happier, more confident mom. This is easier said than done, and I still struggle with it myself.

I have opinions in general about OTs--most being that they are not very helpful. My favorite OTs that I've worked with are seasoned ones who have been in the field of prematurity 15+ years. I have worked with several 20-somethings regarding feeding and fine motor development that are absolutely useless. The bottle thing sounds idiotic. Babies weren't meant to hold bottles. These are human-made constructions made to substitute the breast if the breast is not possible. Bottles are not evil. They are what helped my daughters thrive. However, they are unnatural. What is natural is snuggling your baby while he eats. Keep doing this. It's good for them and it's good for you. Surely, there is something else . . . hmmmm . . . like a rattle perhaps, that can get the baby to hold onto something using both hands. Babies who hold their own bottles are babies who are laid in a crib from infancy on with a bottle propped into its mouth. My girls do not hold their own bottles to this day. I snuggle and give it to them. However, they hold their own sippy cups and feed themselves a variety of foods. Don't ask, rather tell the OT that you need other suggestions to help with this fine motor skill since you are philosophically against teaching your baby to self-feed a bottle at such a young age.

As far as the schedule goes, I would recommend creating a loose schedule. Feedings with preemies are of prime importance and I've always schedule mine. They have to gain weight, especially if there are feeding issues involved, so a schedule is of the utmost importance when it comes to this. However, everything else can fall around the feeding schedule: napping, breathing treatments, exercises, time for you. You'll find there is more of a rhythm rather than a schedule when you do it this way.

Exercises: I've been told rather than to spend a chunk of the day on PT exercises to try to make it a habit to work on one or two thing during every diaper change. I love this method because it requires no schedule. You change a diaper, you do something with the baby.

As for the breathing treatment, I do ours at bedtime. I nurse/give bottles, the girls fall asleep in my arms, and once asleep, I administer the breathing treatment. The sound and the mist actually help them sleep deeper. When I had to do two breathing treatments a day, I would just do one in the morning after the first bottle and the other at bedtime. The breathing treatment never interfered with our day.

Twins, especially twin preemies, can be rough. Some days feel like success if I just stay one step ahead of the chaos. It does get easier (just a little) and much more fun! Snuggle and enjoy those babies and don't let anyone tell you otherwise. Just because you have preemies doesn't mean you have to miss out on the loveliness of having infants. It goes by too fast. Good luck.