Friday, May 8, 2009

CHOC day 5

Here is Maryam with the Nuk brush. I ask Maryam to stick out her tongue and then I brush forward. As her tongue comes further and further out I start the brushing further and further back. Its to help her learn that food can go further back on her tongue. Right now she mostly uses the front of her tongue for moving her food around. I also move it from center to the right and from center to the left. This helps her learn to use the sides of her mouth for moving food around as well. Here is Maryam with the Z-vibe in her mouth. What I'm doing here, is sticking the the vibrating tip in the side of her mouth and having her bite down. This is to help show her that she can use her molars from chewing. Right now she's still using her front teeth for most of her chewing. I know it looks like she' snot enjoying it, but she was laughing the whole time I did it this morning. I do both of these things before Maryam eats.
We had our weekly team meeting today. Fortunately Maryam wasn't there. Her Child Life helper Peggy played with her while we were in the meeting. We were told someone would come get us from our room around 1:30-1:35 and when there was no one here at 1:40 I thought they were coming to tell me that we're kicked out from lack of progress. I'm happy to say that I was wrong. Maryam is off to a slow start volume wise but we're all happy with her progress in textures and tastes. She's eating a lot more variety of foods than she did before entering the clinic. And even throughout the week she's tolerating some textures at the end of the week that she wouldn't eat at the beginning of the week. They're happy with how easily she has adapted to being here and that she hasn't had any toddler meltdowns. They're happy that she's responding to their reward therapy and their different techniques for distracting her and getting her to complete bites and swallows.
As far as volume, Maryam has met 70% of weekly goal. They wanted her to be able to take in 1200 cals/day including the 300 cals she's getting in her nightly bolus. Right now she's averaging about 850 cals/day. Which means she's falling about 350 cals short orally. A temporary solution is to increase her bolus to 1.5 cals/ml and keep the mls at 300. So, instead of getting 300 cals at night, she'll be getting 450. Right now she's getting about 1/3 of her cals from her bolus, 1/3 of her cals from the fortified foods (Ensure pudding, Pediasure and the Boost Breeze juice) and 1/3 of her cals from regular food. So, she is pretty balanced as far as her intake.
We're switching up a few things that might help with her volume. We're going to start incorporating different flavors of the Pediasure so she's not just drinking Vanilla all the time. We're going to dc the Boost Breeze since she's not a fan at all. I'm also going to cut back on the water so she's thirstier when its snack and meal times so that she's more inclined to drink her Pediasure. We're also adding a bedtime snack like a cookie and milk. She asked for "a cookie in my mouth" last night before bed and when I told the team, they couldn't help but give her one. Last night at dinner she asked for pizza! Random.
Volume wise, today hasn't been good at all. Maryam's having a bad day, I think. The resident on duty seems to think she has an upper respiratory infection, but until she starts acting like it, they're going to ignore it and not tell her she's sick. Also, they want Maryam pooping everyday so last night they started giving her Miralax nightly until she starts pooping on a daily basis. They think this will help keep her comfortable and maybe even want to eat more.
Also they're going to start Maryam back on the Pariactin. We've all decided that it wasn't the Pariactin causing the pulling especially since she's still doing it and she's only had 1 dose in a week. They conclusion is that Maryam is just seeking stimulation. My plan for tonight is to try a weighted blanket and see if that gives her enough stimulation to prevent her from pulling. If it works, I'm buying one. If it doesn't, at least I know.
Ruth McCarty the traditional Chinese medicine doctor (who isn't Chinese, by the way) came to visit Maryam today. She did a super cool massage on her that actually made her fall asleep. I guess it was supposed to make her hungry, produce motility and give her some extra stim, but with Maryam, it made her sleep. My punkin. Anyway, Ruth has some herbs she's going to be bringing by the room on Monday for Maryam to get started on. They're supposed to help with motility, cause hunger and have affects on SID. (sensory integration disorder) So, I'm very much looking forward to seeing how these will affect Maryam! I'm expecting them to be nothing but positive.
Today at Maryam's 3pm snack she drank 2 ounces of strawberry Pediasure and as a reward she got to trapeze into a ball pool! She went nuts! She must have trapezed in 4 or 5 times and loved every minute of it. And it helped having Daddy in the ball pool to throw her around a bunch of times too.
Last night there was something in the lobby called Radio Lollipop. I took Maryam downstairs to check it out. As soon as we got off of the elevator she heard the music and went nuts! She ran towards the radio booth and started dancing and running around. It was too cute to see. She spend the next 45 minutes constantly running, jumping and dancing. She went inside the radio booth a million times, she waved at everyone through the glass, she ran around the lobby saying hi to everybody who looked at her. She found another little girl her same age and engaged her in some play time too. Brett showed up at the hospital while we were downstairs so he got to enjoy watching Maryam make new friends and dance up a storm. At one poing we took her out front and let her run around in the grass. It was the first time she had been outside since Monday and she went NUTS! She ran and played in the grass and danced and jumped in the grass. She raced Daddy back and forth across the lawn, she just had a blast.
When we got back upstairs she asked for some water and a cookie. I wasn't allowed to give her either. We put her in the bath with some new bath toys that Daddy brought her. Then Daddy rocked his baby to sleep while Mommy got a much needed and much more deserved shower.
Over the weekend Maryam will only have one therapy session. The therapy session will be tomorrow morning at 8am for breakfast. After that, the other 4 meals for Saturday and all 5 Sunday will be Mommy's responsibility. Wish Mommy luck! Ha!


  1. Good luck! I'm sure it will go great - you are so wonderful with all this! Glad Maryam seems to be taking it all in fine and maybe even "enjoying" it! Love, love, love reading the updates and everything that CHOC and you are doing to help her! It will work!

  2. I have to say Jennifer that after doing a bunch of peds rotations (especially in the PICU) and seeing these 24/25 weekers who are in terrible shape months and months out and have parents that hardly visit anymore because their kids have been in the hospital their whole lives it is incredible to read your blog. It really brings tears to my eyes to hear what an incredible job you're doing and how devoted you are... Maryam is a lucky girl and you and Brett are doing an AMAZING job, and it's a REALLY hard job you're doing... belive me, I've already seen a lot of people who can't handle it! It's amazing how healthy she is being born so early and that's a testament to your devotion. So you better believe that this next baby will be just as lucky and just as healthy and happy no matter what so congrats! I only hope as a pediatrician that I'll have more parents like you and Brett. Keep up the great work. BTW - She is beautiful! :)