A Year Ago Today

I got my bfp. I remember it like it was yesterday... At work, wondering what I was going to drink for New Years Eve, planning on having a bunch of people over to the house. Figured I should test just to make sure, since my period was due the next day or so.


I was so excited I could hardly concentrate. My co-workers must have hated me that day because I spent the entire time running outside to talk on the phone, hanging out with my best friend and her husband in the meeting room, talking with Phil, and updating the girls on GP. We only told our best friends that day, since they were in town for New Years and they were both expecting as well.

That night I drank sparkling grape juice and dreamed about what the New Year would bring. I never imagined such a bitter sweet ending.


14-15 weeks

I keep avoiding new blog entries because progress has seemed to slow down the past couple of weeks. Not the super happy positive news I like to share, but reality...

Lillian had an appointment last week with her Developmental Pediatrician. She was scheduled for a swallow study, but they canceled it when we told them we were already feeding Lillian more through the bottle and that I had widened the nipple. Since she doesn't appear to be aspirating, and hasn't had a chest cold or any signs of aspiration, they just said continue doing what we're doing.

One thing they did schedule was an upper GI in preperation for a G-tube. We have an appointment with a surgeon in 3 weeks to talk about the installation process, and hopefully schedule the procedure. While Lillian is eating more from her bottle, it's just not enough. It takes her nearly an hour to eat an ounce, and that's on a good day. The past two days she has really been a challenge to feed. Hardly sucking and spitting out what she does suck. I'm literally in tears typing this because it feels like no matter how much time we spend trying to eat, she just doesn't want to. I don't like the thought of force feeding my child. How crazy is it that I want her to eat now, and some time down the road I'm going to be regulating how much she eats.

Speaking of regulating how much she eats, poor little Lillian is already on a diet. Her dietician cut back her bottle by 5 mls (not much, I know) but I didn't think she would be on such a strict diet so soon. At least she doesn't care since she hardly has an appetite. So now she gets 115 mls 7 times a day.

I feel like this week she has just completely declined in her abilities. Last week she could hold her head up and she was taking her bottle better. She was batting at her toys and starting to make more noises "talking". This week she just lets her head roll all over. She wont hold it up. She wont take her bottle. When I lay her down to play with her toys, she hardly even tries. She isn't talking much either. I'm really hoping she's just worn out from the holidays and once she gets back on schedule she will surprise us and start to do better again, but I'm starting to wonder how realistic that is. I just need some kind of indication that she's still functioning. Fuck.



Lillian just put a toy in her mouth for the first time. Ever. She loves her Lamaze Peacock toy!


12 Weeks

So much has happened in the past couple of weeks. We had an appointment with the Pulmonologist, which led to a bronchoscopy. The results back from that showed that Lillian doesn't have any major obstruction in her airway.

Last week we had a meeting with our Endocrinologist Todd Nebesio. So far we really like him, but he isn't very experienced with infants that have PWS. He was very hesitant to give Lillian growth hormones this young. We basically told him if he doesn't, we'll find someone else that will. We would rather he give us a try so that the next family in our shoes can get help ASAP. Hopefully we can set a new standard for his PWS patients. Anyway, we found out today that we can get the GH, but he wants us to have another sleep study first. Lillian freaked out during her last sleep study, so it sucks we have to have another, but it's worth it if it means she can start GH treatment. We should find out in a couple days when that study is scheduled. Sometimes they take weeks or months to schedule. Fingers crossed it's a quick appointment for us.

Yesterday we met with Dr. Hainline, the Prader Willi specialist, a genetics counselor, and a dietitian. Lillian is in the 50th percentile for height and weight, which would normally be a good thing, but the dietitian would prefer she be closer to the 25th percentile. She gave us a new feeding schedule and finally gave us more than 3 hours at night! We can finally sleep up to 5 hours straight as long as Lillian doesn't wake us up first.
I also got a call today from the regular pediatrician's office about getting a shot monthly that's supposed to keep her from getting respiratory infections. Now that I think about it, I should probably call Dr. Hainline and get that Ok'd by him. She also has a clogged tear duct, which is no big deal... but it's discharge is kind of green so we're going to the doctor tomorrow to make sure it isn't leading into an infection.

We're still going strong with physical therapy and occupational therapy. I really like both therapists and they tend to stay past their required 1 hour slot and work extra with us. We're going to be working together for at least three years, so I'm really glad we like each other! We might go from 2 meetings a week to 3-4 a week in the future, so I'm SO grateful they work well with Lillian.

Here's the low-down on the other stuff, and a few pictures:

Age - 12 weeks
Weight - 11lbs 3oz
Height - 22.5 inches
Sleeping habits - She sleeps pretty well from 9-4:30 or 5am. Takes 2-3 naps a day that are about an hour long.
Eating habits - She takes 28oz a day. About 18-20 of that is breast milk. Her suck is getting stronger and she's able to take about 40-60ml by bottle a day.
Favorite activity - She LOVES her play gym. She starting to realize her hands can touch the things that hang from the bars and she gets really excited about it!
Cutest Moment of the Week - She kept accidentally hitting her toy that makes chime noises and looked over at it each time. She was trying to figure out how to bring her arms in and hit it again. She also keeps pulling her hand to her mouth and tasting her hands.
Milestones - Better hand coordination, better sucking, rolling from side to back
Firsts - She went to church for the first time last Sunday and also went out to dinner with us at DeAngelos.


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