remember

Good morning Bandjlangdon


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Farewell

Now that I have the honor of being the mother of not only one miracle baby, but two beautiful miracle babies, I decided to start a new blog that reflects my new situation.
Thank you VERY MUCH for sharing Maryam's journey with us from birth to now. Its going to be wonderful sharing all of her new experiences as a big sister. And thank you also for welcoming Jax into our world. It is going to be a new fun adventure sharing the daily developments of another baby.
If you'd like to keep following Maryam and start following Jax the new blog is called Preemie Pandemonium.

Jax day 5

Jax is still doing very well. He's up to 10mls every 3 hours for his feedings. Thankfully, he's still on room air, and at this point it looks like he can stay that way!
He's already wearing clothes and seems to fit into the Preemie sized clothes perfectly. As of this morning he's back up to his birth weight of 4lbs 4ozs.
I'm waiting on lab tests to see if I can get sprung from this joint some time today. If and when I do, I'll upload all of Jax's photos and transfer everything to our new Preemie Blog. I decided that it would be easier on mama to only have to update 1 Blog instead of trying to maintain 2.
Check back tomorrow or later today for new pictures!

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Welcome Jax

Meet Maryam's baby brother Jax! He was born last night at 7:57pm and weighed 4lbs 4ozs and is 18" long.
Jax is strong! He's on room air!! Will update with more later.
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Maryam eating chips & a pregnancy update

I just thought this was a great picture of Maryam eating! Look at how relaxed and non-threatened she is by holding and eating!!! She is an entirely different child than she was before the CHOC Feeding Clinic.
She looks at food very differently than she did prior to learning what to really do with it. Now she knows that food doesn't have to be feared. Food isn't scary. And yes, food can even be enjoyed. Maryam loves chips! I cannot wait to remove that button from her tummy. I think it will be great when the only button on her abdomen is her belly button!!!
In non Maryam news, I've been in the hospital since Tuesday afternoon because of Pregnancy Induced Hypertension. Since my arrival my blood pressure has been brought down and controlled by the combination of meds and bedrest. I really tried being on bedrest at home, but those of you who know Maryam know that she is a VERY active toddler. She takes in 1200-1400 cals a day and burns the same! We know that because her weight doesn't change!
It looks like the only way I can get real bedrest and not "Jennifer's fake version" of bedrest is to have hospital bedrest. The bummer about that is having to be away from Maryam for another 5 weeks, living in a hospital and being away from my family & friends. The good thing about it is if I can keep the BP down, the baby won't have to be delivered prematurely. Imagine the Preemie pandemonium with two of them in one house! Agh!!!
I am trying to convince the perinatologists that I can do bedrest down the street at our friend Jen & Mike's house. They live 4.5 miles from the hospital and Maryam can visit me there. I don't want her to visit me here because she's all too familiar with hospitals and doctors and they freak her out. Just going with me to a prenatal check-up scared her. Seeing me laying in a hospital bed with an IV would be too much. So, maybe by the end of the weekend I'll be sprung from the hospital and staying with friends. Wish me luck!
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Non-sanctioned eating trial

So, last week mama did a little trial on Maryam and her new eating abilities.
1. I wanted to see if I can get Maryam to take her meds orally.
2. I wanted to experiment with more solid foods.
3. I wanted to see if she can go a week without a night time bolus and NOT lose weight.
#1-success
#2-success
#3-success
Hooray!
As for getting Maryam to take her meds orally I mixed 2 ounces of fortified strawberry Pediasure with the meds in her Honey Bear Cup. I gave it to her when she woke up every morning and then again at night around 7-8pm. The super great news is she drank it down in about 10-15 minutes!
As for experimenting with more solids, Maryam did exceptionally well! In the mornings she actually asked for pancakes or waffles or a Hershey Bar. I cut them up in very small pieces and she was able to get half of either the waffle or pancake down in about 30 minutes at breakfast!
At lunch time I offered her Mac n cheese with pepper and she could eat almost half a serving of ready Mac in the allotted 30 minutes!
At dinner time we've been much better at serving her what we've been eating and it turns out that Maryam loves ground beaf and tacos! She asked for tacos a couple nights in a row! Maryam went two whole days without a single pureed meal!!!!
As for Maryam's weight, I'm not going to lie, I was nervous! But, my fears were unfounded. Maryam didn't gain, but she didn't lose either. We all joke that Maryam is so active that it doesn't seem possible that she doesn't drop a pound everyday!
Maryam managed to keep her weight on, take her meds orally and progress with her solid foods. I have to say, it was a GREAT week!

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Eating, eating, eating.....

I bet you're starting to wonder if we talk about anything else in this house besides Maryam's eating progress. The truth is, yes, but not much else!
Maryam ate an entire Maryam sized bowl of mac & cheese tonight for dinner NOT pureed! Woohoo!!!!! That's HUGE! It took her a little over half hour, but she did it.
Maryam and Daddy had a great time at Disneyland yesterday! They went to both parks, rode on 10 rides, watched the parade, fireworks show and Fantasmic. They didn't get home until nearly 2am. Thankfully Maryam stayed asleep when he took her out of the car. He said she ate really well at the park and snacked on chips and popcorn between meals. Maryam loves salty stuff. One of the attractions that stood out with Maryam was the Muppet Theater 3D Show. She has been watching the Muppet Show all day on DVD because of it. Earlier in the week she informed me that she'd like to be Fossy Bear for Halloween. Only Maryam.

Let them eat cake!

Here are some photos of Maryam eating cake! Yep, all by herself! She ate all the frosting off and only had the bare minimum amount of actual cake, but hey, at least she's doing it on her own!

Here are Ian and Anna with their messy cake faces! It was Ian's 1st day of kindergarten!!!!!

Um....

I walked by Maryam's room the other day and this is what I saw. She was standing on the edge of her bed, holding on to her bed rail, watching Peter Pan. The funny part is her chair is right below her. So, she could have sat comfortably and watched the movie, but this is what she chose to do instead.

And yes, I know her room is a mess, but I can only straighten it up so many times a day! Bending is getting harder and harder EVERYDAY!

Who needs toys?

Maryam brought this box out of her room and ignored it for a while.

Then we looked over and saw her sitting inside. Mostly because we heard, "look at me!!!"

This lasted for about a half hour or more. She just kept getting in and out of the box. Silly Maryam.

Painting with Daddy

Look at all those beautiful hand prints. Then she said, "Daddy do it!"

And he did, of course.

And Maryam helped.

She LOVES to paint!!!! We do this everyday.

More eating progress

Maryam had a GREAT eating day again today. For breakfast she decided she wanted a pancake. And the way we make pancakes we can get 500-600 calories in her with one pancake! For lunch she had a bowl (1 cup) of soup, which is another 350 calories. The big news is her dinner. She ate hamburger helper, NOT pureed and mac & cheese NOT pureed!!!! How amazing is that? When we were at CHOC we were always trying to get her to eat mac & cheese and she just wouldn't do it. Tonight she saw Papa eating it and started stealing from him! After about two bites she decided that she needed her own bowl of mac & cheese! Hooray!!! Then for dessert she ate actual ice cream! It was the funniest thing ever. Every time she took a bite her whole body would do this little shake because of how cold the ice cream was in her mouth. It was hysterical! After about two bites from Mommy Maryam decided that she needed her own bowl of ice cream too. Daddy made her a bowl of Cool Whip and ice cream and she ate most of it! After the ice cream she decided for her "nack" she wanted pepperoni. She polished off 6 pieces of pepperoni and then requested a Hershey Bar. I didn't give her a whole Hershey bar because by this time it was almost 10pm. So, she got 4 pieces which is 68 more calories.
Maryam is making HUGE strides in textures. She still prefers the purees and does far better with them than with whole foods that require her to chew first before swallowing. But she is trying so hard. Last night for dinner she wanted a taco SO bad. We gave her a bowl full of taco meat and she ate it all gone! This morning when she woke up she wanted more taco, but settled on pancakes instead.
Its really nice being able to cook for my child. Its even nicer hearing her ask for a particular food, try it and eat it all up! Its amazing. I know its an everyday occurrence for most moms, and it isn't really a big deal to most, but for us its HUGE. On Sunday we're going to try to start potty training. I'd really like for Maryam to be out of diapers before our little guy is born. Wish her luck!
Tomorrow Daddy is taking Maryam to Disneyland. Mommy can't go because my blood pressure has been really high the past week. Hopefully he'll remember the camera and I'll be able to post super cute photos of them enjoying Daddy/Daughter Day!

Maryam has pulled her button out twice this week. I'm thinking she wants to get rid of it as much as we do! We went ahead and replaced the old button with a new one so hopefully that will make it harder for her to pull it out. I know she's only doing it because it bugs her so much. So Mommy has to get on the ball and really start teaching her to take her meds by mouth. I was really hoping her therapist Dawn could help us with this, but its taking Kaiser FOREVER to approve Maryam's OT. I just don't want to do anything wrong that could scar her from ever wanting to take them orally. Thankfully there are only 2 meds in the morning and 5 at night. The real problem I think is going to be the Chinese herb she's supposed to take 30 minutes before each meal, it smells and tastes DISGUSTING! Ha!

Pregnancy News

Non Maryam related news. I had a peri appointment yesterday. So far, so good. I'm 30w 1d and he's measuring at 30w 5d approximately 3lbs 11ozs and in the 65th percentile. I think its odd that he's not even born yet and we're already comparing him to the rest of the population. We have no real news on his left kidney issue. Only that my doctor thinks its some sort of duplication anomaly. Oh how I love the word anomaly attached to both my pregnancies..... I have to schedule another big ultrasound so that a radiologist, geneticist and urologist can look at both his kidneys and try and diagnose the issue before he's born. My doctor seems to think that he has either two kidneys fused together on the left or he has one kidney that has to ureters draining into one place causing a blockage. The kidney has a kink in the ureter causing it to be HUGE. Its full of amniotic fluid and is currently the same size as his stomach. Nothing will be done until he's born. When he's born the doctors will do a bunch of tests to see where the blockage is, determine the severity and then develop a plan of action for fixing it. From what my doctor says, he's going to need surgery for sure, but we won't know when the surgery will be until they can determine the severity of the damage.
Anyway, it doesn't seem like too big of a deal. At least not compared to all of the issues Maryam had at birth.
I go back on September 2nd at which time we'll schedule my C-Section for sometime in the 38th-39th week. After that appointment I'll be going in once a week until he's born! Wish us luck!!!!

New Big Girl Bed

Maryam got a new big girl bed from our friend Kelly. She slept in it last night and woke up this morning and was able to get out on her own. She came and got Daddy and told him to come watch TV in her bed with her. Of course he obliged. She has since taken to sitting on her bed to watch movies instead of sitting in her little movie chair. I asked her if she likes her new bed and she said she loves her Mickey bed. Too cute. Today for nap time she went and laid down in her bed and fell asleep like she usually does. So, I guess its safe to say that Maryam is comfortable and happy with her new big girl bed. Yay!