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.