Insomnia

The benefit of my insomnia is that you all get an actual Maggie update. I'm aware that this is long overdue, as pictures and videos don't tell the whole story...

You'll recall that earlier this month, I took Maggie to an almost forgotten Developmental Follow Up appointment with the Lankenau Team. It was there that we reconnected with Maggie's Speech Therapist Dahlia. Dahlia worked with Maggie in the NICU, and is a very large reason we were able to take Magoo home when we did.

We began our weekly Speech Therapy appointments last Wednesday. (I'll point out that for the next few weeks, Maggie's Wednesday's will be very busy. Our OT appointment with Allie is at 2pm, and we see Dahlia at 5pm. Poor kid! Makes ME tired, and I'm not a micropreemie!) Dahlia observed Maggie in the high chair with spoon feeding, or lack thereof. She observed me giving Maggie the bottle. I was actually glad that Maggie was acting "typically", even if it was frustrating that I couldn't get her to eat. I needed SOMEONE to understand how serious this is. Dahlia tried to use bubbles as a reward for eating. When Maggie would open her mouth, Dahlia blew bubbles. Maggie LOVED it! She laughed and smiled and was really having a good time. But she didn't want to eat. Each time the spoon hit her lips, she would clamp closed and shake her head. (Is is possible for her to understand "No" yet?) When I offered Maggie the bottle, she took a few sucks, came off, and cried. She whined, she struggled, she would NOT drink.

Dahlia told me that Maggie's problem is behavioral. We've been through this before. But no one has ever actually given me a plan before. When I talk to the Pediatrician, he says to talk to GI, who says to talk to Developmental, who sent us to the Feeding Clinic at CHOP. Who actually said: "You're doing a great job, mom. Keep it up! Don't worry, babies don't need bottles forever." Well, thank you, geniuses, I don't need a pep talk, I need my kid to eat without the help of that tube I shove down her nose all the time! (Yeah, I'm still a little pissed off about that.) And, while I'm at it, I'm also pretty mad at any health care professional that suggests I should be THANKFUL for Maggie's feeding issues. Because "at least" she's alive, "at least" she doesn't need oxygen, "at least" she hasn't been sick. Uh, have you SEEN the tube hanging out of her nose? Last time I checked, NORMAL kids eat on their own! Just because it's not life threatening, doesn't make it any less serious! (Alright, I'm off my soapbox now.)

Dahlia came up with a very clear plan. Let's try letting Maggie actually get HUNGRY before we feed her! It sounds so simple. But because we know Maggie needs a certain amount of calories during the day in order to grow, we were feeding her every 3 hours, hungry or not. So wouldn't YOU refuse a spoon shoved in your face if you weren't hungry? Especially if it was a spoonful of pureed peas? The video I posted earlier this week is of the feeding after seeing Dahlia. Because Maggie refused to eat during the session, by the time we got her home, she was actually hungry! We saw a difference in about 24 hours!

Dahlia gave me her cell phone number, and instructed me to call her after every feeding. ALL DAY LONG! Seriously. How lucky we are to have such a dedicated, concerned Speech Therapist on our side! Dahlia and I kept in contact all day on Thursday. Just by switching back to a Level 1 nipple, and feeding Magoo every 4 hours, Maggie went from about 90% tube fed to about 70% tube fed. Feeding is semi-pleasant again. She gets excited when she sees the bottle warmer, and just yesterday morning, was trying to reach for the bottle out of my hands! This from a kid who, only last week, would start to scream the minute you sat her in your arms for a feeding!

Admittedly, I did have a good cry on the way home from that initial Speech Therapy appointment. Inevitably, talking about Maggie's feeding issues leads to talking about GTube placement. Dahlia said that one of the philosophies with kids that won't eat is to continuously feed over night via pump, so Maggie can get her calories. Then, during the day, we feed her whenever she is hungry. We cannot do this with an NGTube. If Maggie were to pull the NGTube out during the feeding, she could drown. The other issue with the NGTube is sensory. It HURTS, she gags on it, she coughs on it, it allows her stomach to stay open which makes the reflux worse, which makes it hurt, which causes her to hate feedings, etc etc. All the things we're trying to get rid of to help her change her behavior. Maggie has also become more curious about her surroundings, which we encourage. However, her "curiosity" over the tube stuck to her face means that she pulls it out much more often. Which means I have to re-insert it more often. On Sunday alone, she pulled it out 3 times! Since reinserting her tube is no fun for either of us, it's just perpetuating the negative feelings she has for us shoving things toward her face. Perpetuating the oral aversion even more. A surgically implanted GTube, while it has its own risks, would at least get rid of these sensory-type issues.

That being said, I am terrified of a GTube. I have heard many micro-parents say that the GTube ends up being a good decision for them and their children. I support that 100%. And, while I'm sure their children are doing well, and they are doing the best they can FOR their children, I am still scared of the GTube. It's major surgery. On my 12 pound baby. Who almost died a couple of times, thankyouverymuch. There are complications-- vomiting, bowel obstruction, infection. And in a way, the GTube feels like defeat. When we left the NICU, everyone reassured me that the NGTube would only be in for a little while. I kept reassuring myself, too: "At least it's not a GTube"... And here we are, considering it... Scary stuff.

I am reserving judgement until we can get into the Hershey Feeding Clinic. Our OT, Allie, had mentioned it several times, and Dahlia strongly encouraged me to contact them as well. Evidently, both Dahlia and Allie have had patients go to CHOP and Hershey. Both agree that Hershey tends to be a more structured, and overall more successful program. We'll fax in our paperwork to Hershey this weekend, and I suspect we'll be able to be seen sometime in March. The doctor at the Hershey feeding clinic "can get a tube out of any kid", according to Dahlia. Great! I'll take Maggie to Canada if there's someone who can help us!

So, for now, we'll stick with our 4 hour feeding plan. Maggie's been much more receptive (as you saw in the video) to eating. Not every feeding is like that, but more than before. She takes between 1 and 2.5 ounces from the bottle, and probably eats 50-100% of the baby food we offer her twice a day! Wow! We are back to late night feedings, though. Because we need to keep up with Maggie's calorie requirements, and she's eating less frequently, we give her one tube feeding late at night without waking her. It's been hard, but only because we've been spoiled by our baby that sleeps 12 hours every night! The last feeding is usually finished around 12:30am, and we can be in bed by 1am.

We are heading to CHOP today to see Dr. Bernbaum, Maggie's Developmental Pediatrician. Maggie will see Dr. B every three months until age 2. This is our "6 month corrected" visit. I am going to try and be brave and ask Dr. B what she thinks about the GTube issue. I trust her opinion, and know that she'll be honest but helpful.

Maggie will be 10 months old on Sunday. I cannot believe it's been 10 months! In a way, I feel like this whole NICU nightmare began 60 years ago. On the other hand, I feel like I blinked, and the time flew by. I would be lying if I didn't admit to being completely exhausted, still. I am very lucky that Dan is as involved with Maggie as he is. But emotionally, I feel like I've been carrying the weight of the world on my shoulders. It's very hard to keep putting one foot in front of the other, when progress is so painfully slow.

But, as always, I'll soldier on for my girl. She does new and funny things every day. She laughs all the time now. And what's even funnier is that she laughs at EVERYTHING, not just when we play with her. Yesterday, the dog got up from one of his many naps, stretched, and walked over to the bouncy seat where Maggie was playing. She smiled a big toothless grin, and belly laughed as if to say "Hey, look at my puppy! Isn't he cute and funny?" She's the happiest baby I've ever seen, even considering the torture she's been put through in her short life. I'm profoundly thankful for that.

~Sara
and ps- We are now starting Day 3 of a puke-free stretch. If we make it to bedtime tonight, that makes FOUR puke-free days! Wow.

Baby Bird

The new 4 hour feeding schedule is already showing improvements. Here's a video of our Baby Bird during one of the best feedings we've had thusfar:

~Sara

Sweet Dreams

Dan caught Maggie and me taking a nap this evening:

~Sara

More Historic Than The Inauguration

February 18th, 2009


OUR FIRST PUKE FREE DAY SINCE AUGUST!!!!!!!!!!!!!!


I can't believe it. I just can't believe it.

Quick, everybody go to bed...

~Sara

Happy Valentine's Day

Yeah, I'm in LOVE...

~Sara

Gift of Gab

Yesterday, I took Maggie back to Lankenau for her 9 month developmental follow up.

She is just below the 3% for her weight (corrected), and 10% for length and head circumference.

Maggie excelled in cognitive testing, and communication. She is at about a 7-8 month level. (She gets both from ME...)

She is lagging a bit in her motor development, and obviously with feedings. She is testing at about a 4.5-5 month level. Not terrible, but we don't want to continue to slide backwards.

I was happy to see Dahlia, the speech therapist that worked with Maggie in the NICU. She spent alot of time talking with me, catching up on Maggie's feeding issues. When I was finished, she said "So what's the plan?" And I said "There isn't one. They just keep telling me to keep doing what I'm doing. I feel like I'm doing alot of this on my own." And of course, this made me cry.

Dahlia suggested that we start dedicated speech therapy sessions once per week to address Maggie's feeding issues more aggressively. We already see Allie, Maggie's county Occupational Therapist once weekly, but Dahlia suggested that it might be better if we concentrate on Maggie's motor delays with Allie, and feeding issues with Speech Therapy.

So that will start hopefully next week. We are hoping insurance will pick up the cost. If Cigna doesn't, we think Medical Assistance should take care of it.

Maggie's been doing a little better with eating in the last 24 hours. Yesterday, during our visit with Allie (after our developmental follow up), Maggie ate a tablespoon of rice (mixed with a tablespoon of formula), a tablespoon of sweet potatoes, and a tablespoon of apple puree. She was wearing quite a bit of it, since we encourage her to play with her food. But I would say she ate about 3/4 of it. She was actively opening her mouth for more, seemed happy the whole time, and she sat in the high chair for an entire 30 mins! Afterwards, she took about an ounce of formula by bottle, and I gavage-fed the rest via tube. It reassured me, to say the very least.

This morning, she took about a tablespoon of oatmeal with a tablespoon of formula, and a tablespoon of apples. She ate pretty much the whole thing. She wasn't as active in her eating, I had to sing and make her laugh and smile and then I'd shove the spoon in her mouth. She swallowed, though, and didn't fight me too much. Afterwards, she didn't take anything by bottle, and so I put all five ounces through her tube. She had a moderate spit up towards the end, but I was able to give the last half ounce without a problem.

She's sleeping away in her swing now.

I know this will be a long, slow road. I try not to wish away her infancy, I want to enjoy her. Especially since I think she may be my only child. But it's hard not to think about her being 3 or 4, and hopefully being beyond these problems.

Maggie is big enough now to fit into some of her 6 month clothes! Her 3 month sleepers were getting to be too short! We just did a mountain of laundry, full of cute new outfits. She's such a fashionista!

Pictures, soon, I promise.

~Sara

Guilty as Charged

There are still days...

... when I cry because I'm so tired of cleaning up puke, even though Maggie is so much better than before.

... when I remember the NICU in an almost visceral way, even though it's been almost six months since I've walked down that hallway.

... when I wish for a "normal" infant, even though I would never give up my precious Peanut Face.

... when I feel like a bad mother for having that kind of day, even though I know it happens to everyone.


I am guilty of thinking that when Maggie started babyfoods, she would magically eat. As if this preemie would suddenly say, "Oh yes, this is what I've been missing! Give me more! And a bottle while you're at it!"

I just want her to eat. Eat, already! This half ounce at a time crap is for the birds! The barely a teaspoon of cereal and sweet potatoes isn't very encouraging. Playing with a sippy cup doesn't count as "using" it.

There are still days...

... when I just don't want to be a "preemie mom" anymore.

~Sara

New Toys

This is what 12 pound 9 ounces of preemie looks like when playing with a sippy cup for the first time:
Maggie had her 9 month check up today with Dr. Meyer. She now weighs 12 pounds 9 ounces. We are very happy with her weight gain, and we are all crossing our fingers that we can get her to eat in the next few months.

Since Maggie hates the bottle, we have been letting her play with a sippy cup at meal times. She doesn't suck from it yet, but she will bite on the spout and try to bring it to her mouth.

Baby Genius, I tell you!

~Sara