Over Due

It's been a long time since I posted some pictures... Sorry! Here's the best of the last couple weeks!


First things first, here's the 6 Month Piggie Shot:
Our Little Trick-Or-Treater (She went right to sleep after I took this picture!):

Grandpa playing with Maggie and her rings:
Here she is, discovering a "playmate" in the mirror:

"Hey, do you live here too?"

A small break from the tubie:

Grandma provides lots of entertainment:

Maggie will watch that Star wherever it goes:

And, much to the excitement of Uncle Brent, Maggie just LOVES the RedSox mobile that Dan bought her. It's a big favorite during changing times, and before/after baths:

"Take me out to the ballgame...":

"Hello Green Monsters. You're not scary at all!":

On the Food Front: Maggie's Hunger Strike continues. She will sometimes take 1/2 to 1 ounce by mouth, but that's about it (and not with every feeding). I would estimate that she is 95% tube fed. This is unbelievably frustrating, since it is 10 times worse than when she came home 3 months ago with the NG tube, and 1,000 times worse than 6 weeks ago, when she was eating 3-4 ounces at a time. She will still suck on her fingers and her binky, which is a great sign. This means that she doesn't have a complete oral aversion yet. We are trying to encourage her to take the bottle, but when she refuses, we put it down the tube and try to get her to associate binky sucking with a full tummy. It's a slow process, and I wonder if we are not at the top of the slippery slope. I try not to get ahead of myself, but it's so hard not to worry!

She is otherwise a sweet and happy girl. She even started to giggle this week. Dan was dancing and singing to her, and all of a sudden, this little belly-giggle escaped. It was possibly the cutest thing on the planet! We haven't been lucky enough to catch it on video, but you can be sure that once we do, you'll all get to hear it for yourselves.

There are still a couple of days left to participate in the Vacation Poll! I keep texting Dan with comments about poi, grass skirts, and froofy drinks that come with umbrellas... ahhh, the power of not-so-subtle suggestion!

~Sara

Siesta

Everyone is asleep! Dan has a migraine, and went to sleep it off about an hour ago. Maggie finished barfing all over me and the floor (luckily we were in the kitchen-- it's SO much easier to clean linoleum than the carpet!), and promptly zonked out. Even Ben the WonderPuppy is snoring away next to the couch.

So I am enjoying a little peace and quiet. What to do with this new found time? Well, I'll tell you.

I took a long, hot, shower. I can't remember when I took a shower for longer than 3 minutes in the last 6 months! The only reason that I got out when I did today was because I was worried that there would be no hot water left for the laundry pile that is waiting downstairs by the washer! It was lovely. I did alot of thinking. For once, I did NOT do any crying. (I'll admit that my morning shower is where I get the tears out usually, so I can make it through the day.) I washed my hair TWICE, because after all, the bottle does say "Rinse and repeat". I buffed my fingernails. I scrubbed every little inch of me with the shower puff, and came out smelling slightly flower like. I moisturized. I put on my comfiest jeans (yup, still maternity, sad to say), my oldest softest sweatshirt, and my smooshiest fluffy socks.

Good Lord, why can't I do this EVERY day?

I have also been daydreaming a bit. Dan has been traveling quite a bit for work, and has now racked up enough Marriott Rewards Points for 5 nights in a hotel! YEEHAW! I'd love for us to get away together. We deserve, and truly need, a break from our daily stress. Now, before anyone gets excited, we aren't going anywhere anytime soon. If we go at all, it will probably not be until Fall of next year. As much as I need a break, I am not ready to leave Maggie. For goodness sake, I have trouble being gone all day at work, let alone 5 nights in a row! I'd also like her to be a little better with eating before I would feel comfortable leaving her with my parents. I am the only one who is comfortable putting the NG tube in, so it has to be out, and she has to be eating independently for us to go away. So, yes, it will be a LONG time before we cash in on these free nights.

In the meantime, I'll daydream of where we'll go. Maui sounds nice. Or London. Or St. Kitts (I don't know anything about St. Kitts, but the resort on the Marriott website looked DIVINE.) You, blog readers, get to participate... where should we go? Feel free to participate in the poll to the right side of the page (do you like the new design, by the way?), or post a comment with suggestions...

Hmmm.... Maui..... that really sounds so wonderful....

~Sara

A Game of Tag

Some of the preemie mom blogs I follow are playing a game-- BLOG TAG! Here's how it works. You go to your desktop pictures, and post the 6th picture of the sixth folder. Here's mine:

These are my dear friends, Nicole (blonde) and Julie (brunette). In May 2003, we took a PINK LADIES trip to NYC for the weekend. It involved sightseeing, good food, great conversation, and evidently room service for breakfast (which I had forgotten about). Check out our awesome PINK LADIES t-shirts that I found, and which are a uniform requirement anytime the three of us get together!

We all met in grad school, and after "getting to know each other" while practicing some important OB/GYN Nurse Practitioner skills, we became fast friends. I'll leave it to your imagination to figure out how we all became the "quickest paps in the east"... Thanks alot, PENN. We somehow coined ourselves "The Pink Ladies" (from the movie Grease, for those not in the know), and it kind of stuck. Since then, Nicole has given birth to her own little pink lady, Natalie, and a little T-Bird, Anthony. Julie has T-Bird Owen, and I rounded out the Pinks with little Maggie.

Seriously, though. These two are among my closest and dearest girlfriends. We don't see each other nearly as much as we should. Ironically, they are both NICU nurses by trade, and have been such a support to me during Maggie's early arrival and the months that followed. Jules and Nic, thank you so much for being my PINKS, I love you both and don't know what I would do without you!

I tag Linda and Kirsten! You're it! (I'll be nice and send an email letting you know you've been tagged...)

In Maggie news, I got a call from the GI nurse today. (When we hadn't heard back from Dr. Bernbaum about Maggie's new meds, Dan called the GI, and in the mean time, Dr. B called me back. I should have been more patient.) The nurse told me that Dr. Kelly said to give the Prevacid INSTEAD of Zantac, not IN ADDITION TO. But she also wanted to give me a TABLET to feed to my 6 month old/3 month corrected preemie. I asked about that, and the nurse said "Well, you can ask the pharmacy, they'll tell you how to mix it with water". Seriously???? More on that in a moment. The nurse also said that Dr. Kelly would like to go ahead with the endoscopy and biopsy of Maggie's stomach. This makes me VERY anxious. Maggie would be given "conscious sedation", which means that they would give her IV medication to make her very sleepy for the procedure. I just don't like the idea of any sort of anesthesia being given to my micro-preemie. The biopsy would look for "allergy cells" according to the nurse, and if there are few of them, we would have more leeway with reflux medications.

I have to do a little more research and talk to Dr. B before I agree to this plan. I left her a message today, and am hoping I didn't sound too sniffly as I was trying not to cry.

I am just scared. I just want Maggie to eat, and for her to be okay. If the biopsy is going to help with that, then I guess we have to do it. But I just need to make sure it's the right thing to do before I agree to it. (The other bummer is that it would mean another trip to CHOP downtown, because they can't do the procedure at the satellite office on a baby less than one year old because of "the risks". Oh boy, does THAT inspire confidence!)

Please continue to pray for our little one. And her mommy and daddy, too. Thanks for checking in on our girl.

~Sara

Smart Kid, that Peanut...

Maggie is pretty much refusing to eat anything.

That's how I know she's smart. (Bear with me, folks, I'll get you there.)

Every baby is born with a suck reflex. When you put something in their mouths, they suck on it. As they mature, normal babies figure out that when they are hungry, they cry, and somebody feeds them. And every time they suck on a bottle or mom's breast, it satisfies them-- full tummy, warm fuzzy kind of feeling. Micro-preemies like Maggie, especially ones with severe reflux problems, don't really have the same experience. They don't really recognize "hungry". Remember when Maggie was on continuous feedings in the NICU for so long? There was no hunger-satiety cycle. Reflux kids also have pain with every feeding time. It's no fun-- it's nausea, force feedings, vomiting, and pain. But they eat, because it's what they are programmed to do. At around 2-3 months old (Maggie's "corrected age" right now), all babies lose this reflex suck. So micros like Maggie don't WANT to eat. Because she knows it will hurt. Because she knows we will force her. Because she knows she will vomit.

See? Smart kid.

But my little Mensa member is only eating about 1/2 ounce by mouth at a time. I spoke with Dr. Bernbaum, our Developmental Pediatrician from CHOP. We met her for the first time on Thursday, and have been in close contact since then. I have elected her as the "Go-To-Girl" on all things Preemie. For the last several months, we have felt like we've gotten 8 different opinions from 8 different people, and we just didn't know who's plan to follow. We immediately liked and trusted this doctor, so now SHE'S IT! (Everyone all together now-- God Bless Judy Bernbaum!) She and her Nurse Practitioner JoAnn (who we also loved, but perhaps I am biased to love other NPs) did a full assessment of Maggie and talked with us for over 90 minutes. They agreed that Maggie's feedings are the biggest problem. Otherwise, she is developmental where she should be for 3 months corrected. She looks around, turns to different sounds, smiles, makes eye contact, uses her voice to make little baby coos, and is generally a very sweet and happy baby.

Dr. Bernbaum was LIVID that I was told to stop breastmilk. Something about the difference between a home-cooked meal and a TV dinner, I think she said! Anyway, she told me that while she believes that there was something in all of the formulas that was making Maggie's reflux worse, she's not fully convinced of a true milk allergy. Dr. B feels that the uber-expensive NeoCate formula that the GI suggested is somewhat overused, and is actually kind of hard to digest. SO GIVE MAGGIE THE BREASTMILK! (Okee, dokee, that I can handle.) We will also be adding Prevacid to Maggie's medications. This works similarly to the Prilosec that we tried before, and will hopefully help Maggie's reflux pain when she eats. We are stopping the Neutraphos, which Maggie was on for her bones. Her last set of labs showed a marked improvement, and this medication can be tough on the baby's stomach. Essentially, we are tackling any barriers that could be contributing to Maggie's Feeding Refusal. We are also under strict orders to make feeding time a FUN time-- this means NO force feedings, NO fighting, NO cajoling! If Maggie wants to suck from the nipple, we offer and encourage that every time. BUT the second that she starts to fight, we put the feeding down the tube, give her a binky (so she can begin to associate a full tummy with sucking), snuggle and LOVE HER UP! We want her to LOVE feeding time, to look forward to it. Right now, the minute we get her into position with a burp cloth, she starts to cry before the bottle even touches her lips.

We will monitor Maggie's weight, and if she is not growing at the rate that she should, we will think about supplementing with formula powder again at that point. Same goes for her labs, if they increase again, we'll add back the medications to correct the problem. The important thing now is to get our Peanut to EAT! It makes much more sense to have her eating 20 cals per ounce by mouth than 24 cals per ounce by tube. (I think I have another "doctor crush" on Dr. B-- don't tell Dr. Meyer!)

I am glad we have a plan. I feel better that we have some kind of direction now. But I will admit that I am in a very rough place right now. I am frustrated, scared, emotionally EXHAUSTED.

This is why I've been absent from blogging for a while. When Maggie was first born, I started setting little "goals" for myself. It's the only way I can cope. Looking at the "big" picture was too overwhelming, so I tried to break the timeline into smaller chunks. During the 105 days in NICU, I kept thinking "It will be better in August." In August, sure overall, things had improved, but Maggie was still going home with a feeding tube. So I told myself, "Just get to the fall, it will be better by Halloween." And in many ways, Maggie is doing much better than when she first came home. But to know that the feeding tube is back in, and will probably be for a while, really scares me. I squint to see the "finish line"-- the other day, my pediatrician said "When we get to Maggie's first birthday, we'll all look back at what a tough time this was, and know we got through." Okay, well, that's what everyone told me about the first 3 months, then the first 6 months.... I don't want to set a goal of her first birthday, because I am not so sure it will be as sunny as everyone thinks.

Part of it is that I know the NG tube is only a temporary solution. If we can't teach Maggie that feeding times are fun and fulfilling, if we can't get her to suck, we have to look at long-term options. She would need a G-tube, which would be surgically implanted in her tummy so that we could feed her liquid nutrition to help her grow. We would still try to get her to eat like a normal baby, but the G-tube would allow us to pump milk directly into her stomach. This is a really major thing. It's hard to say how long it would need to be in, but I know of many other preemie parents who have watched their babies turn 1, 2, or even 3 years old with a G-tube in place. Luckily, Dr. Bernbaum is VERY aware of my concerns, and agrees that we have to be agressive in treating Maggie so we can avoid the G-tube placement altogether.

I just never thought being Maggie's mommy would be like this. I know it's hard for you all to understand, and I know you must all get tired of reading it. But I can't believe this is my life sometimes. It just wasn't supposed to go like this.

But we will soldier on for our girl. We will make feeding time a wonderful, fantastic, warm & fuzzy kind of experience. I will make it so great that all she'll want to do is eat! Because she's my Peanut, and I'm her Mommy. And it's what I have to do.

And I will take solace in my rewards of little giggles and HUGE goofy smiles....

I love you, Maggie. Don't you worry, little Peanut Face. Mommy will take care of you.

~Sara