Wednesday, November 26, 2008

And good luck with that!

Today we went to the Johns Hopkins University Pediatric Gastroenterology Clinic to have the boys evaluated for their reflux and come up with a way to improve their weight gain. The clinic is impressively large and well organized. We got in, registered like as if we were at the DMV only much faster with less creepy people around, got the babies weighed in with their vitals and were speaking with a Nurse Practitioner within a half hour of our arrival.

We reviewed their NICU history, their diet history, their medicines history, their patterns, and symptoms. The Nurse Practitioner did a very brief physical evaluation and said that because the boys are not throwing up there isn't much they can do for us. My response was I don't think that we're getting any relief from this visit or help with their being categorized as "failiure to thrive" and why did we bother coming and she said that she'd talk with the dietician and the doctor and let us know their recommendations.

An hour later, we were just about to pack up an leave it took so long, she comes back with the doctor and they tell us that the bottom line is that because the guys aren't showing the typical signs of reflux (which is basically all the things they are doing now, but that they should ALSO be throwing up a whole lot more) that they don't think it's reflux. And because it's not possibly not reflux (because they aren't throwing up), and because they are going by the babies adjusted ages which are exactly in the middle of the peak reflux stage of most children, and lastly because they have never had a good experieince with eating due to their extreame prematurity (months of tube feeding, gas and severe bloating issues, and early reflux with vomiting that has been resolved with Prevacid) that the doctors don't have any other suggestions except to give us some antibiotics in case there is some kind of infection in their upper GI and to change their formula yet again and to call them back in about 8 weeks to see if they grow out of it. And because they think that the boys might grow out of it they won't recommend an upper GI proceedure because they are so little and it's a very invasive proceedure involving sedation and a brief hospital stay.

So there's nothing they can do to help with the process of eating. And there's nothing that the Occupational Therapist can do to help with eating eather because she thinks the problem is a medical one and will only follow up with us on a monthly basis until we get the medical aspect of all of this resolved. But everyone agrees that they are grossly underweight, not gaining enough weight, and are too small for their ages even given their prematurity. So now because they won't work with us we can't get into the growth and nutritional program at the Mt. Washington Hospital to help fix the "failiure to thrive" issue.
I'm trying to be my kids advocate but I feel like I'm hitting a brick wall yet again. I'm calling the pediatrician tomorrow to give her the update on all of this because I don't know what else I can do. I will also switch the guys back to the Enfamil Enfacare preemie formula because it has the most calories in it and we will fortify it and go back to adding the vegetable oil to every bottle for even MORE calories. And we will still take upwards of two hours to eat maybe 4 ounces.

Oh and I will start trying to introduce solid stage one foods in hopes that will help too. And I will change their feeding schedule from every 4 hours (at 8mos of age) back to every 3 hours just to keep a steady stream of food in them as best I can.

This vicious cycle is just getting worse. They can't eat, so they don't grow, and they can't sleep, so they don't develop during their sleep cycles, and throughout all of this they are screaming every time they have to eat. If this isn't forcing bad eating habbits then I don't know what else could. My babies will be anorexic before they even hit pre-K.

It's a good thing this is RSV season so that we can't go anywhere because the aspect of feeding these guys in public is just frightening. I just can't get over the fact that this is something they will just grow out of. It doesn't seem right.

Friday, November 21, 2008

"Every day is better than the next."

Just when you think you've got it all figured out it just gets worse. They are back to square one today with the reflux. We can barely look at a bottle, let alone touch a bottle to their lips and all hell breaks loose for both of them. Now they hear each other crying and they have to scream together. It's killing me to hear and this see them struggle and in pain ALL. THE. TIME. They are withering away literally and I can't figure out what to do to help them. We have to let them scream until they are so tired they will dream feed in their sleep. The OT who came Wednesday couldn't get over how whiny, miserable, and easily agitated these babies are, even in their dim quiet room and just kept asking "Are they always like this?". There was nothing more she could do to help them. All because of reflux. This GI doctor better be the shit or I'm going to go postal on someone.

Wednesday, November 19, 2008

Follow up to Reflux Hell

So Friday I called the Pediatrician and she changed up the boys medications and told us to stop giving Prevacid and the vegetable oil in their bottles, increase the Zantac from .6 and .7mls three times a day to .9mls four times a day. By Saturday I was calling the on call pediatrician begging to give them the Prevacid and stop the Zantac completely because things had gotten about 10x worse! I'm glad I did it too because once I gave it to them they were a bit better and there was less shreiking and more eating. The Zantac is really making them hysterically irritable and refuse to eat anything.

On a bad note, the boys gained weight in the last two weeks but not nearly enough. Evan only gained 2oz now weighing 10lbs 2oz and Cameron gained 4 oz now weighing 11lbs 9oz. They have previously been trending about 1 1/2oz a day which is ideal, so they really haven't gotten any weight gain these last two weeks.

We have since cut out all the Zantac and changed their formula to 1/2 Good Start and 1/2 Enfamil AR and tonight I'm expecting night #4 of SLEEPING THROUGH THE NIGHT! I can't believe it! They go to bed at 7pm and have a bottle at 10pm and then sleep until 4am. It's amazing! I can't beleive it and hope it continues this way for a loooong time.

We aren't able to get in to see the GI specialist until the 25th but as long as things continue as they are right now or better I will be okay. We also met with an Occupational Therapist today but she really couldn't help us much because we need to ge the medical reflux issues resolved before she can pinpoint where we can use her help. I am already doing everything she was able to suggest so far. I just can't handle another week like last week.

Okay, off to make bottles for the night. Keep your fingers crossed that they continue to sleep through the night.

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.

Wednesday, November 12, 2008

Please help other babies like mine! (repost)

This is National Prematurity Awareness Month.
Did you know that 1 in 8 babies is born too soon?

You can help babies like mine, maybe even your babies, have a better chance of survival. Read our story in my blog starting with the post "Introducing Cameron & Evan". But more importantly, please take just a moment to sign this petition to help babies everywhere!

March of Dimes - Petition for Premature Babies

1. We urge the federal government to increase support for prematurity-related research and data collection as recommended by the Institute of Medicine and the Surgeon General’s Conference on the Prevention of Preterm Birth, to:

  1. 2. We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care.
  2. 3. We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines.
  3. 4. We call on businesses to create workplaces that support maternal and infant health.

If that link doesn't work here's the TinyURL which you can copy and paste into a new web window:

Pass this on!!

Tuesday, November 11, 2008

Mylicon Recall Alert

See link for details: