Friday, November 14, 2008

Our Reflux Hell

Have you ever wondered what it's like to bottle feed two babies at the same time? It's daunting, really scary at first. The very first thought I had when they said we were having twins was "Oh my god my poor boobs! How do you feed two babies?" It was something I thought of many times a day while pregnant. And bottle feeding certainly did not seem nearly as daunting and scary as breastfeeding them. And frankly, I still don't get how other mom's of multiples (MoM's) can do either breastfeeding of two or more or tandem bottle feeding. I just don't get it. I'm struggling to bottle feed them one at a time. And I have help every day too!

Now, if you have never tried breastfeeding let me just tell you there is nothing natural about it. It doesn't just come to you just because you're a woman with all the working parts. Both you and the baby actually have to learn how to make it work. And it is not for those that are weak or faint of heart. Where do you put your arms, how do you position the baby, how do you know if you're doing it right, how much are they getting to eat.... Not to mention what it does to your poor boobs. All very awkward and stressful. And if you have never had a preemie then I'll tell you that breastfeeding a preemie, especially one that was born very early, is extremely difficult. Not only are they way smaller than your one boob alone, so small that their little mouth can't open wide enough to even get a good try at it, but that you can almost suffocate them if you don't hold them just right. No joke! The doctors and nurses at the NICU said they won't even let you try breastfeeding a preemie until around 32 weeks because their trachea is like the thinnest tube of rice paper and all you need to do is hold their head at ever so slightly the wrong angle and you can restrict their air way.

So thanks to the less than enthusiastic, overbearing, and horribly organized lactation department I was never able to overcome my anxiety and frustration to master the art of breastfeeding. I exclusively pumped for 18 weeks. Proud of it, but I'm glad it's done. Pumping is something I'll have to save for another post one day.

So just how do you feed two babies a bottle at the same time? As I understand it, the concept of feeding two babies at the same time, according to the MoM's I've spoken to works like this: you put each baby in a bouncy chair or a Boppy pillow, put said baby filled chair / pillow on the floor or couch or coffee table on either side of you, strap on the bib, grab a burp cloth or two, cram a bottle in the mouth of each baby and burp occasionally until the milk is all gone or baby refuses any more. The books and lactation demons, I mean consultants, all say it should take about 30 minutes to feed a baby, and when feeding two at the same time you might take upwards of an hour because you stop to burp each baby or deal with some spit up.

But what they don't tell you is how to deal with everything else. What else is there to deal with you ask? Ohhohohoooo well let me just tell you! Actually I should video tape it but it would probably bring you to tears from either laughter or commiserate pity.

Here's how I feed my guys at the same time.

First we change each baby's diaper (a habit from the NICU cares process we've kept). While you're changing each diaper the baby in front of you is usually pretty content, but the one waiting their turn is screaming urgently for their turn to be changed or to hurry up and put the bottle in their mouth. Once each baby is set up in their bouncy seat the fun really begins. For the first 5 minutes there is the blissful sound of two infants happily chugging their meal. I wait until one of them decides they've had enough and need to be burped. Then I extricate the other baby's bottle as soon as they release their jaws of life latch. (The jaws of life latch on the bottle is something these babies developed only after many months of working with an Occupational Therapist as they had really horrible breathe, suck, swallow timing and a terrible sucking latch ability.) Things are still pretty calm at this point, until I start to try and burp the first baby. That's when our reflux rears it's ugly head.

Following are the possible/probable scenarios that happen at every single feeding for both boys in order of likelihood (and it doesn't matter if they are being fed at the same time or on a one on one basis):

1. One full hour or more of screaming, shrieking, back arching, hysterical fits after the 1st ounce is eaten because of reflux and painful burps. The baby will start shrieking horrible piercing sounds, arching the back, flailing arms and legs, flinging their head back suddenly when you are least expecting it like a backwards head first death dive to the floor only for you to frantically catch them at the last second. We used to have vomit volcanoes too but thankfully that was fixed by prevacid and zantac. After the 1 to 2 hours of all of this they are exhausted and fall asleep at which point I can dream feed about one to four more ounces but it really throws off our schedule.

2. Happy food avoiding babies who will make themselves gag when you put just the tip of the nipple in their mouth and move their heads from side to side or up and down to avoid the nipple. They also like to smile, squeal and chat, and (while I'm actually thrilled at this long awaited development it's frustrating) push, pull or shove to the side the bottle with their hands. Or they may just clamp down on the nipple and stare at you refusing to eat at all. Or they have the weakest, slackest latch and all the milk just dribbles out the side of their mouth - all the while smiling sweetly at you. After the 1 to 2 hours of all of this they are exhausted and fall asleep and then I can dream feed them some more.

3. Sleepy babies that will dream feed a full 5oz or 6oz bottle and burp once and sleep for 4 hours no problem. This has happened maybe 15 times their entire 7 months of life.

Also, to mix it up a bit, throw in the pooping while holding the bottle in their mouth, needing to change the diaper again half way through the feeding. This is fun because all they can do is focus on pooping. They hold the bottle in their mouths and stare at you while they bear down, face turning red, grunting. Eventually there is the tell tail audible and olfactory signs of needing the diaper changed. Something about having a bottle in their mouths makes them want to poop.

The unpredictability of these scenarios really makes going anywhere very difficult. They sleep in bouncy chairs because nothing else is as elevated, even the wedge is not as good. They get prevacid and zantac. They are on fortified Good Start with 4mls of vegetable oil (which is for calories but actually has the added side effect of helping burps come up faster sometimes). We try to feed them at the same time at the 2am and the 6am feedings but those are always the worst and can take upwards of two hours to get through because most of the time is spent calming and consoling and burping and generally just trying to get them to keep the nipple in their mouths. All the other feeds throughout the day I'm lucky enough to have my mother here to help feed one while I feed the other but that does not solve any problems, it just means I'm not dealing with two at the same time.

They are officially being categorized as failure to thrive even though they are gaining some weight. They are still well below the 25% for their height to weight ratio. Makes me feel like a BIG failure myself though I know that is not true. The pediatrician wanted us to get into an outpatient post-NICU growth & nutrition program from Mt. Washington Pediatric Hospital but they wont see us until the boys are a year old and we've met with a pediatric gastrointestinal specialist and tried everything they can think of.

We are meeting with the GI specialist at Johns Hopkins in two weeks (that's the earliest they could see us). What questions should I ask? What other things can you suggest we try to help these babies eat? I am so stressed by all of this all the time, I'm at my breaking point and I just don't know what else to do.


Jennifer said...

I remember when our Evan was pronounced failure to thrive. If the GI specialist suggests the GI tube, it's OK to freak out at first, but dang it was such a good thing for him. I mean it. Read the comments from the Baby on Bored blog. Good luck and we will be waiting to hear!

n. said...

i am so sorry that you are going through all of this. i wish there was something i could do to help. keep up the great work. you are a fantastic mom and are so NOT a failure.

Sara said...

I am sorry you are having to deal with this. I can't imagine. Remember that you are an awesome mom and they wouldn't have any other. You are not a failure and you are doing everything you can to get these little guys help. I will be praying for you and your little guys. :-)

Sara said...

I tagged you! Go check out my blog to find out what to do. ~Sara