Mommy Potty Break

Here's what I came back too! Maryam "reading" to baby brother. How sweet is she? See! She can be sweet when she wants to be, she just doesn't ever want to be. Ha!
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"Play pin"

Giving it a try. Baby Jail, play pin, ugh, never thought it would come to this! I almost feel its more appropriate to put M in there! Ha!
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Mama needs help!!

So, on Saturday I had Jax laying on the floor flat on his back naked. This seems to be the only way he stops screaming. He has to lay stiff in my arms, fully extended or flat on his back on the floor. In any other position he screams. Anyway, back to Saturday. M walked by him and stepped right on his chest. I think she tripped or lost her balance or something. It wasn't intentional.
Today she was all dressed up looking sweet in her Sleeping Beauty dress-up clothes when she took off running, tripped and landed knee 1st on Jax's forehead. Ugh. Ok, so now Jax has had the misfortune of M's most recent weight gain.
My mom said that I can't put Jax on the floor. But if I don't let him stretch out and explore his little body on the floor, how will he learn to crawl, roll over or move?
I'm so confused! HELP! Please leave me advice in the comments section or email or text or facebook or Twitter if you've ever had to deal with anything like this before. Thanks!
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Feeling better?

Ha! Took her in and her lungs sound good. And she took a few bites of Daddy's hotdog!

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Great Grams and Great Auntie Karen

Grams and Jax.

Maryam, Grams and Jax.

Auntie Karen and Maryam.

They all look so very festive. I love it.

Birthday cake

Maryam's cake. Actually it was supposed to be the cake for Sarah's baby shower. But since no one ate it, we decided to have it for Maryam's birthday. We had a big party planned for Maryam's birthday, but then she got sick. So, we had a little family party on Sunday since our relatives were down. Next weekend we're going to have a party with all of her friends.

Above we have Maryam blowing out the candles. When she was done it was Charlie's turn! But we had to cover Maryam's mouth because she kept trying to blow them out again!

Pretty Princesses

Maryam as a very disheveled Snow White and Charlie as a pretty, pretty Aurora.

Both outfits came from a dress up trunk that Auntie Sarah and Uncle Scott gave Maryam for her birthday.

Picking our Christmas Tree

Maryam actually picked our tree 2 years in a row!

She's silly.

Here she was telling the employee all about her trip to DLand.

Here are Maryam and Daddy posing with their tree.

Maryam has taken absolutely no interest in our Christmas tree since its been up. She didn't want to help me decorate it, she hasn't taken any ornaments off or asked to play with them. She's pretty indifferent. What's up with that? I thought she'd want to help me decorate it. Nope! However, when Daddy came home she said, "Look what I did, all by myself!" What the heck?

Baby BFF's at Disneyland

We took Maryam and Anna to Disneyland for Maryam's 3rd birthday. They had a great time! It was very cold though, VERY cold.

They have matching BFF Mickey ears, but Maryam couldn't find hers. I looked all over her room before we left and they are MIA. I still haven't been able to locate them and I even purged the toy box!

Cousins

The Carroll cousins. From Left to Right: Maryam, Jax, Trip, Paddy and Collin.

Palm Springs Christmas Light Parade

Cutie pictures of Maryam. Below Jax is nursing under that "hooter hider" and blanket while Maryam got a kick out of whatever float had just gone by.

Here's a picture of one of the old fire trucks decked out with lights. It was a fun night, but STUPID cold.

Meeting some classics

Auntie MayMay's store had Santa and some super heroes come visit last weekend. We took Maryam and Jax so that Maryam could meet Spiderman and Mommy could get a picture of them with Santa.
Santa to Maryam- What do you want for Christmas?
Maryam- Toys!
Santa- ho,ho,ho. Anything in particular? What kind of toys?
Maryam- ummm, fun ones!

She's so helpful.

Here is Jax with Santa. I took advantage of him being asleep and took a picture of him with Santa all by himself. I figured that Maryam has pictures of her and Santa, Jax should too.

Maryam had zero interest in meeting Batman, Superman or Spiderman, which honestly shocked me. But when she saw The Cat in the Hat, she was over joyed!
She said to me- Mommy! Its a cat, in a hat! Isn't that so silly? I NEED to hug him.

Awwwww, she's the sweetest. She wouldn't leave that silly cat's side. Dr. Seuss is Maryam's favorite author so far. She will read anything Seuss at any time. LOVES, LOVES, LOVES Seuss. Seeing him and hugging him was a real treat. Which was nice after seeing the indifference she had towards Santa and the super heroes!

Checking out the stars

When the games and decorating were all done Maryam decided she needed to lay on the ground with Daddy and look at the "bootyfull night sky". So, they laid down in the driveway and stared up at the stars. I went inside and got them a pillow. They stayed out there a while.

Hide and Seek

While Daddy was out hanging Christmas lights on the house, Maryam decided that he needed to take a break to play Hide and Seek. Above you can see her counting to ten. She's was adorable. She'd yell "Here I come, ready or not Daddy!" and then take off running in any direction.

Above you can see she found him hiding in the tree.

In the above picture here you can see that she was watching him hide while she counted! Below you can see her smiling her mischievous smile knowing she got busted!

Bumbo Boy

Above is Jax in Maryam's Bumbo. Auntie Leanne, (can I call her that?) Auntie Lynn's sister, kindly gave us her son Austin William's Bumbo so that Jax wouldn't have to be in the pink Bumbo anymore! I think he looks better in blue anyway. Hehehe

Pictures from the renal scan

FINALLY asleep in Yaya's arms. I had to hand him off because I REALLY needed to go to the bathroom. He had been screaming since the IV fiasco. Just thinking about that makes me cringe....NIGHTMARE!

Here is what the kidneys looked like when the test was just over 50% complete. You can see the tremendous difference in the two kidneys. Yikes, right? The left one has severe hydronephrosis, the right has mild. The little white dot at the bottom is his bladder.

Here is how the technician kept Jax still through the test. He wrapped him in a blanket and then taped him to the table! I gave him some Tylenol to help relieve some of the IV/needle pain and eventually he drifted off to sleep.

Here is Kevin, the Nuc Med tech that did the test on Jax. He was super duper nice.

We have since on test results back. Dr. Nanigian called on Tuesday and told me that Jax will for sure need surgery on the kidney itself. The incision will be on the left side right below his rib cage. His hospital stay will be only 3 to 5 days and they're hoping to wait until March. Apparently once you reach 6 months old you have the same risk factors from anaesthesia as you do at any later part in your life. The doctor from Rady Children's should be calling us soon to let us know for sure when Jax will have the surgery. He wants to review the hard copy of the nuc med renal scan first.

video from today....TRYING to take a Christmas card photo

Maryam, Then and Now

Family Time

Daddy trying to teach Maryam Checkers has been a little less than successful. But our curious little girl really wants to try to learn! Jax is laying there watching the scene unfold. The good news is that he's not screaming! Woohoo! Hopefully he stays quiet for a little longer. Usually he screams until after 10.
We got home last night after 10. It was a long day. After the test we went up to the NICU to donate a picture of Maryam. The nursery decorates with pictures of their former patients. I'll upload the photo later for my readers to see. I wanted to give them a picture that would inspire hope in other mommies of micropreemies. So I had the central picture be of how Maryam looks now instead of harping on how she used to look.
The staff LOVED it! They want to put her picture up over the scrub station. That way every parent will see her when they come visit their own little one!
Ha! The Jax not screaming phase didn't last long, he's already back at it. Damn.
JL
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The test

....the IV collapsed. First thing I did was call up to the NICU, talk to the charge nurse and told her what was going on. She agreed to meet me at peds and do the IV herself. Thank God for knowing people in high places and having the NICU on speed dial!
Alisa met us, checked the IV, started a new one and got us going again. The nurse manager for the NICU met us over there too. Jax got some Sweeties, some nursing and we were headed back down.
The test started at 2:35. We taped Jax into a little burrito and then for 45 minutes a machine took pictures every 30 seconds. The tech said that usually the kidneys stop glowing by the end of the test, Jax's were still lit up like the Las Vegas strip. I'm not sure, but I don't think that's a very good sign.
Jax fell asleep about 20 minutes into the test and laid there quietly, not moving, until it was time to remove the IV and catheter. He is such a good boy. Of course Tylenol and Sweeties helped with that. I'll post pictures when we get home. If I'm not too tired of course.
JL
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Off to a banging start

We left the house at 8am. We hit a ton of traffic in Moreno Valley. We finally got to Kaiser at 11:30. I checked Jax in at Nuclear Medicine. They sent us up to the 4th floor pediatrics unit. The unit is gorgeous! Every room has stained glass windows. The walls are painted to look like you're in a garden. The ceiling is painted with butterflies and birds. Its all beautiful.
"I knew we should have left when pee squirted in my face." Those words were uttered by Yaya! That's the kind of experience we had. Nuts, right?
We check in and are told to go into the parent's room and wait until the room we're going to be is ready. I started nursing Jax and waited for about 15 minutes. Once we were taken to our room the charge nurse started putting in his catheter. Pee squirted all over us! It was crazy!
After that, we had to watch while the sadistic nurses poked both of my sons hands looking for a vein. They finally got an IV to work on his left foot. Now I'm just hoping it doesn't collapse before his test!
We go back to nuclear medicine at 12:30 where we're told we have to wait until 1:30 for the injection! So now I'm nursing Jax again in an attempt to calm him from the torture he suffered a few minutes ago.
I'll update again later. Wish us luck!
JL
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Nervous

Mama's nervous about Jax's scan tomorrow. I'm not quite sure why though. It won't be his first IV or be his first procedure. If nothing else we'll finally know where the obstruction is. And we'll know if his left kidney is functioning at all. Technically its all good. So, why am I so freaking nervous?
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Update

We had a wonderful Thanksgiving. We went to Auntie Lynn's (Justin's wife) mom's house in Joshua Tree. The food was good and the company was equally good. Unfortunately Yaya and Auntie Lynn were sick.
But we do have lots to be grateful for this year. Maryam got to go to CHOC to learn how to eat and has been doing wonderfully. Jax is thriving. Brett and I are healthy. Auntie Karen and Uncle Tom both made it through extensive surgeries. Grandpa Langdon is healthy, Grams is doing well. Our parents are loving being grandparents. Sarah's pregnancy is going smoothly. We have wonderful friends and a very supportive family. Like I said, lots to be grateful for.
Maryam is at an awesome age. She amuses me and amazes me more and more everyday. She told us today that she'd like to meet Vincent Van Gogh! But instead she went to the doctor and got her 1st dose of the H1N1 vaccine.
Yesterday we took her to Disneyland to celebrate mine and Brett's 6 year anniversary. We all had a great time. We watched the Christmas parade, visited Santa's reindeer and went on lots of rides. Auntie Sarah, Uncle Scott and Charlie babysat Jax for us. Maryam wanted to take her giant bear (who she affectionately named Choco!) with us to Disneyland. When we told her no, her response was, "but he's a very good bear." LOVE her!
Jax's colicky hours seem to be getting longer. Today he started at 4:30 and its after 9 and he's still very upset. I called in his weight to the nuclear medicine clinic for his scan on Wednesday. He's up to 9lbs 3ozs! My little guy has gotten huge! Last night Jax slept from 11pm to 7am. That gave Mommy & Daddy 8 hours of uninterrupted sleep! Yay!
I guess that catches you all up on most everything. Wednesday is Jax's scan, i'll update after that.
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Jax update

Jax had a 2 month well baby appointment last week at the high risk clinic in Riverside. He got his 2 month vaccinations and his 2nd dose of Synagis. The doc that we saw is amazing. I loved her!
Jax is in the 40th percentile for weight, 85th for height and 20th for head circumference. He weighed 8lbs 10.5ozs and was 22" long.
The crazy thing was she said I'm feeding him too much! Funny considering Maryam has never eaten enough! She said he should be getting 83mls at each bottle feeding. Well I've been giving him anywhere from 90mls to 120mls at each bottle feeding. Since her recommendation, I've backed him down to less than 90 and most of the time he's fine. So, maybe she was right, who knows. Most of the time he nurses, so its not really a major issue, I suppose.
Right now I'm battling colic. The funny thing about that is, I always thought colic was just an excuse parents used for a cranky baby. Boy do I feel stupid and judgemental! I googled it and everything I've read in the descriptions of colic is what I'm dealing with in Jax. Tonight was actually better than most nights, but wowza! The only thing that stops him from screaming is nursing or a bottle. But eventually he gets full and starts spitting up! But spitting up doesn't even stop him from wanting more. Its nuts.
In Maryam news, she's starting to realize that Jax isn't going anywhere. She asked Yaya the other day, "Do you like him?" Ha!
I'm still battling her to potty train and sleep train. She doesn't want to go to sleep before 11:30 and she refuses to potty train.
Good news though is that she's eating better. I even got her to drink pink lemonade today! Of course she didn't like it, but she tried it.
Happy Thanksgiving everyone. We'll be in Joshua Tree at my sister-in-law Lynn's mom's house. We're all looking forward to it. They're all very nice.
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My former 25 weeker

Today is Prematurity Awareness day. I thought I'd take a few minutes to tell you about my 1st Preemie, Maryam.
Maryam was born when I was pregnant for only 25w 2d. She was alive for 7 weeks on a ventilator before I was even allowed to hold her. She spent a total of 154 days in the hospital. She had 3 surgeries, a PDA ligation, laser eye surgery and a fundoplication w/g tube placement.
Maryam's NICU stay was a roller coaster ride of ups and downs. Every night when we'd leave the hospital we'd fear a phone call from the hospital telling us to come back.
Finally 1 week before her 5 month birthday she got to come home with us. Since then she has grown into the brilliant, sweet, beautiful little girl that you read about today.
Its Prematurity Awareness day, hug a Preemie!
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Helping Mommy

When I asked Maryam if she wanted to help Mommy make dinner, she replied with, "I don't mind if I do." Jeez, pretentious much? Take a good look at what she's "seasoning" with........Wilton purple sugar sprinkles.

And salt! Don't worry, the stove wasn't on and neither the salt or sprinkle containers were open.

Getting stronger

I propped Jax up against the couch so I could get a good picture of his face. Isn't it a cute face? My goodness.

Here he is trying to hold his head up. He's getting bigger and stronger! I weighed him yesterday and he is up to 8lbs. 4.5ozs. He's over 4 pounds heavier than he was when he was born. Yowza! I guess that means God was listening to me the whole time I was pregnant. I prayed for an "eater" and I got one!

Jax had another urology appointment on Friday. This appointment was with the Kaiser Pediatric Urologist. He agrees with the doc from Rady's Children Hospital, surgery is eminent. Apparantly his kidney is slightly larger than it was when he was discharged from the NICU. According to this doc, the fact that the kidney is bigger rules out a physical abnormality. So, now 2 of the 3 most common reasons for children to have hydronephrosis have been ruled out. No reflux, and no physical abnormality (just being born with a big kidney) means that he has an obstruction. We kind of pretty much already knew this. Now the newest ultrasound showed that there wasn't any swelling in the ureters, so that leads the doc to believe that its a UPJ obstruction. Our next step is to have a nuclear medicine radioactive scan. This is going to be pretty extensive. Jax will be in the hospital for about 3 to 4 hours. He'll get an IV, a catheter, a series of antibiotics and lasix, then the scan will begin. This test should so how much kidney function there is as well as exactly where the obstruction is. After that, surgery will be scheduled. Depending on how much kidney function there is the surgery will be scheduled for March at the latest and December at the earliest. Let's all hope for lots of kidney function and surgery being pushed back to March.
That's all I got!

Maryam's new hair style

Before the haircut.

During.

The back.

The finished look! How cute is my little punkin? I decided to have Maryam's hair cut because her pulling and chewing is at an all time high. My thought was, if her hair isn't long enough to chew on, maybe she'll forget this awful habit. She's still pulling it out, but not nearly as much. And because she can't chew on it, combing and brushing it has gotten much easier on both of us. Trying to comb through hair that has been chewed isn't easy. The knots are awful and it obviously hurts her when I'm attempting to get them out. Since the haircut, combing her hair is a piece of cake!
Thank you Taylor! She looks adorable.

Maryam watching the parade

I think the highlight of the afternoon was the parade. Maryam loved seeing her favorite characters and we loved watching her watch them. That's not to say that the rest of the afternoon wasn't great, because it was. Its just always a wonderful feeling to see someone you love so much, so very happy.
After the parade, we headed over to Midway Mania for a little 3D arcade shooting action. Daddy and Maryam stomped Mommy 177k to 141k. I had a higher accuracy score, but accuracy doesn't count in this game.
By the time we were done over at Midway Mania, CA Adventure closed. We headed over to Disneyland to catch a few rides that Maryam enjoys. She requested Winnie the Pooh a dozen times before we even got inside the park. So, we started with Winnie and worked our way back towards the entrance. Our favorites are Haunted Mansion and Pirates of the Caribbean. The Haunted Mansion is all decorated for the holidays with The Nightmare Before Christmas! A wonderful new addition this year is the aroma of gingerbread cookies at the holiday party scene. LOVE it.
After the HM we went over to Pirates. By this time I was in horrible pain. I forgot to bring my breast pump along for the day. By the time we were on Pirates I thought I was going to explode! That's probably TMI sorry. It was a strange feeling being away from Jax for the afternoon. But thankfully I had enough milk pumped for him and his grandparents were generous enough to care for him for the afternoon so we could have some time with Maryam. It was a good day.

Pixar Parade

I am officially the worst parade picture taker in the world! I don't think Mr. Potatoe Head is really supposed to look this bad. But my camera skills are just that bad.

Check out Woody....what you can't see is that Jessie is behind him. If I were better at this, you'd get to see both characters.

"McQeen". Maryam loves Lightning McQeen. She got a kick out of seeing all of her favorite Disney characters walking, dancing and moving along right in front of her. And we had a blast watching her.

4 Faces of Maryam

Yay! We're going up in the air....woohoo!

Where Yaya Go?

I think I know......

Two tickets to the gun show. Her thought was derailed by being two years old.

Maryam time at Disneyland

Maryam is finally tall enough for the bumper cars! Yay! Well, at least in the shoes she wore today she is. These bumper cars can be found in the Bug's Land at Disney's CA Adventure. She went on the ride twice, both times she had a fun time with Daddy.

Here is a picture of Mommy and Maryam. We're on Flick's Flying ride....can't remember what its called. She really enjoys the rides over here. The lines are short, the rides are short and she gets to dance to music while she's waiting in line. What more can she ask for?

Yaya's bday cake

Maryam saw Daddy make a cake yesterday, so she wanted to as well. It took everything in her 2 year old power not to eat that teddy bear. So when she begged to eat the frosting I took the opportunity to let her decorate Yaya's bday cake. She decorated with "Lots of colors." THEN, she chowed down on lots of left over frosting and its the really fatty, home made kind! YUM.

Random Saturday Photos

Here is a teddy bear cake that Brett made for a woman he works with. The hotel had a baby shower for her yesterday and Brett made this for dessert. Pretty great, huh?

Here is one of the 15 bunnies we find in our backyard on any given day. We also have a Road Runner, (that I have been trying to get a picture of for years) some snakes, lizards and dozens of Black Widow spiders. Maryam loves chasing the lizards, she hasn't caught one yet.

Popeye Jax

One eye open. All he needs is a corn cob pipe and a can of spinach!

I weighed Jax this morning on the super rad digital infant scale that Kelly loaned me. Jax is up to 8lbs! Amazing. He has nearly doubled his birth weight in two months. I have to admit, its pretty great not having a nurse coming to the house once a week for weight checks! Its equally great not having a feeding tube coming out of his nose. Ah, the little things in life.

The roll over

Relaxing.

Thinking.

Trying.

Mission: Accomplished.

Dear Preemie Mommy

Dear Preemie Mommy,
I'm so sorry. Don't say you can't do it. You do it everyday. Just getting up on some days is difficult enough and you do it! You do it for her.
I know how you feel. It starts with, "let's have a baby!" then from there the hopes, dreams and visions of your perfect little baby with their perfect little body and the perfect little life that you're all going to have together. Then one day, boom! You're sick. All your prayers turn to her, to her survival and well being. All those dreams, visions and hopes practically shatter while your sanity hangs on by a tiny thread.
Next you start feeling guilty. Guilty because you know that its your body that did this to her. Everyone tries comforting you by telling you "its not your fault", "there was nothing you could do", "you didn't do anything". In the meantime, you're looking at your baby through an acrylic box being kept alive by tubes, IV's, nurses and doctors all while "thinking this is my fault".
Next, they start talking to you about all of her complications both present and the possible future. You start feeling even more guilty. But now you're not only feeling the guilt of what she's going through, now you're feeling the guilt of mourning all that you lost. You lost your pregnancy, you lost the dream of the perfect delivery, the hopes of a normal life to come, the possible siblings, your gender identity.
After all that, you have now. Not only are you dealing with all the "mom" stuff, teaching her how to sit, crawl, walk, talk, socialize, count, read, sing, dance, etc. YOU are a nurse, doctor, OT, PT, ST, pharmacist, ambulance driver and social worker. Your schedule has more appointments on it now than it did when you were a career woman.
But everyday you wake up, you look at your calendar and you get it all done. You never forget the guilt, you never forget those words "let's have a baby" and you look at your daughter and thank all things holy that you have this opportunity. Because deep down under the big pile of shit that you put on yourself everyday, you wouldn't have it any other way.
I know in my heart that if Maryam was born to any other mom she wouldn't be where she is today. You were chosen. You were selected to be her Mommy because no one else in the whole wide world can do what you do. She is lucky to have you and you her, because without each other, you wouldn't be as amazing as you both are today.
Hope that makes you feel a tiny bit better.
JL

I wrote that letter to a preemie friend of mine back in April. We were both having crappy days and I felt this need to write to her so that she knew on some level, she's not alone. I'm not going to pretend that I know how all moms of preemies feel, but I think I can relate in many ways. Today I had a crazy emotional day. For most of the day I was fine! I was hanging out with great friends and enjoying the afternoon. I had taken Jax to an appointment for another renal ultrasound, and his kidney looks good. Its not any bigger! Which to me, means that the kidney has to be functioning, yay!
But on the way home from San Diego, my mind started reeling. The past few days I've been reading all these stories of former preemies who are now thriving adults. Its great! It gives moms like me, and so many others out there, hope that our little preemies will one day be like any other person. My mind, being as bizarre as it is, kept focusing on what Maryam used to be. Its Premature Birth Awareness Month and all the talk about NICU's and preemies has my mind back in December 2006 & January 2007 pretty much reliving the roller coaster ride of Maryam's life.
I know I suffer from a little PPD and PTSD and I'm not ashamed of it. I think both issues are very real and I'm aware that I'm not alone and that many women who have gone through what I've been through suffer right along side of me. But on days like today when I had to take my little boy to have another test on his kidney, I start feeling like I'm going through hell all over again, only this time with a son instead of a daughter.
I noticed yesterday that I started feeling a little sorry for myself. LAME! I've never in my almost 3 years as a mother ever felt sorry for myself. Mostly because I didn't know any different. As a first time mother I just went along with it. I was told that what I was doing was difficult, but when its all you know, its all you know! I have to say I'm very grateful to God that he gave me Maryam first. I think that had I had a 25 weeker after a 33 weeker I'd be bitter. I don't know how any parent can handle that.
All these thoughts led me down the direction of all the mommies out there who gave birth to a child, and that child didn't make it. For whatever reason he/she was taken to heaven. My heart goes out to you mommies. I'm still grieving a baby that ALMOST died, I don't know how you ever stop grieving a baby that actually did die. A song came on the radio today that I used to sit in the NICU and sing to Maryam. Just hearing that song took me straight back to those horrible days where we didn't know if she would make it through the night. I sat on the freeway bawling over something that happened almost 3 years ago. I sat there bawling even knowing that she turns out great! I was crying over the "what ifs".
If you know a preemie mom out there you know someone who has, at some point, had a day much like the one I had today. Give her a break if she's extra sensitive to "normal baby" issues or if she just starts crying from a tune.
Its Premature Birth Awareness Month. I hope my little blog post made you feel a little more aware.

Maryam's Halloween Portraits

I haven't taken Maryam to get her portraits done since October 2007. Two years! Crazy, huh? So, a few weeks ago I took her to Sears and had them take her picture in her Halloween costume. The women working there got such a kick out of her that they started calling their friends in other departments to "come see Spidergirl". After a few minutes, Maryam had an audience watching her get her picture taken. That's going to do nothing for her already larger than life ego I'm sure.
Any who, I wanted to share them with all of our readers. Enjoy!

Harvest Festival

Here are me and the kids before taking off for the Harvest Festival at our church. My little Spider Girl and Monkey Boy......Thanks Auntie May May for the Monkey outfit!

Here are me, Jax, Yaya and Maryam watching the Pinata getting busted up. Maryam wouldn't even try.

Here is Maryam in a fire hat. This girl LOVES fire hats and hard hats. I only wish I was able to get a picture of her in the Cinderella dress and the hard hat. That was hysterical!

Here is Maryam doing a cake walk. She was the last one selected and went home with super yummy brownies!

Jax's Baptism

We decided to baptize Jax on All Saints Day. We thought it would be a great day to do it, the opportunity presented itself, so we took it! The woman in the above picture is Peggy. She's going to school to become a priest. She is also Maryam's physical therapist. Yep, small town.

Here are Jax's God Parents. Uncle Justin and Auntie Lynn. Thanks guys!

Here is a family photo. One of the only ones that Maryam isn't making a funny face in!

Here we are with both sets of grandparents.

Trick or Treating

My family. Awe, so cute.

Spider Girl!

Minnie Mouse!

The girls had a blast Trick or Treating! Maryam wanted to go inside every house. I think I'm going to have to start having "the strangers" talk with her. I feel very hypocritical though! First telling her to go from door to door asking strangers for candy, then later telling her, "never go with a stranger or take candy from strangers." Being a parent is awfully confusing.

Super Heroe Halloween

I went as Super Woman, Maryam went as Spider Girl and Jax went as Bat Jax! It was fun.

Disneyland on Halloween

Maryam dressed up as Cindrella for her trip to Disneyland on Halloween. We try to go to Disneyland every year on Halloween. I just love seeing all the kiddos dressed up!

C is for Cinderella

L is for Langdon

Auntie Sarah with her Snow White and Cinderella.

Easy Jax

I caught myself saying "lugging this guy around" today. Its funny because Jax is so very portable. When I want to walk around carrying him, I can! I just walk around! I don't have to wrap up O2 tubing and pull a cart with an O2 tank on it. I don't have to rig up a feeding pump in the car. Jax will take a bottle or nurse. I don't have to place an NG tube 5 times a day. He doesn't have any tubes!!!
Last night Brett and I were talking about how we catch ourselves doing things the hard way. Brett said that when he changes Jax's clothes he is cautious not to snag his button. Can't snag a button that isn't there! I caught myself taking Jax's clothes off down his feet instead of over his head. We couldn't take Maryam's clothes off over her head or we'd end up with clothes on her oxygen tube.
I will be eternally grateful to God for giving us Maryam first. I didn't know how hard we really had it until we had this easy guy.
We're so fortunate to have two beautiful, healthy, happy children. Oh and for the record, I'm fully aware that I'm not supposed to compare them to each other. I just couldn't help it!
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Maryam's follow up with CHOC

Maryam's appointment with the feeding team went well. I didn't like that I couldn't go, but hey that's life.
They were glad that Maryam has transitioned away from purees so quickly. They like that she is taking less time to eat and that she's requesting foods. The dietitian wants us to sneak vegies into Maryam's diet. She recommended a book and we bought it. The nurse practitioner wants Maryam to gain more weight. So, for now we'll continue giving her a bolus at night and keep trying to put more weight on her.
She came home very excited about spending time at CHOC. She gave everyone hugs and sat in one of her therapist's lap during the meeting. I love how much she loves them. The team has been amazing. She loves them, we love them and they have forever changed our lives.
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Maryam baking cookies

First she has to play with the cookies.

Then she actually started to understand.

The best part is that she actually ATE the cookies! Yay for eating cookies!

Cute Jax pictures

Daddy and Jax

Jax....so cute.

Jax chilling in his bouncy chair.

Grocery shopping

Maryam has a great daddy. He takes her grocery shopping and he even lets her bring her own shopping cart. When it was time to pay for her groceries he gave her money to give to the check-out person so she could even buy her own groceries. How cute is that? She wanted to take this grocery cart with her to CHOC.....but then again, she wants to take it everywhere!

Sloppy Paint Job

This is what happens when Maryam paints while Mommy vacuums......she wins.

Sibling love

Well, it has been a while. I don't even know where to start. Weight: Maryam 26lbs...YAY! Jax 6lbs 6.4ozs....YAY! Eating: Maryam is eating all solid foods now with the exception of pudding and soup. Jax is nursing around the clock. Health: me, Maryam and Jax all are sick with yucky colds. Somehow Brett managed to avoid it, lucky Daddy. Our car has broken down twice in the past few weeks. One time it broke down the day before we were scheduled for a follow up appointment at CHOC. We didn't make it. Brett and Maryam are in Orange County right now because Maryam has an appointment with the feeding team tomorrow morning. I stayed back with Jax because he's still sick. I'd hate to take him into a hospital with sick children and get them or him even sicker. That would be lame and irresponsible.
It just occurred to me that I haven't updated since Jax's appointment at Rady Children's Hospital in San Diego with the urologist. He definitely does need surgery on his left kidney. We won't know what kind of surgery until he's bigger. The plan for now is to wait until the end of November and do another test. Hopefully that test will determine where the blockage is. Once the docs know where the blockage is that is causing his kidney to be so large, they'll go in and operate. If they can't, they'll probably just remove the kidney to avoid further damage to the working kidney. We're hoping to put the surgery off until he is over 6 months old, but if the docs think that his good kidney would be at risk then the surgery will be done earlier. The earliest would be around his 3 month birthday....mid December. The latest would be mid March.
Maryam and I got our flu shots the other day. She did really good! She only cried for a few seconds and that was before she got the shot. Once she got the shot she was fine. Weirdo baby. Jax will get his first synagis shot on Thursday. The great news is that we're were able to get him into the clinic in Riverside. We won't have to go all the way to San Diego like we did for Maryam. Yay!
Maryam lost her glasses. We cannot find them anywhere! It sucks. I'm not giving up though, I'm determined to find them somewhere. They couldn't have just disappeared.
Jax is rolling over more and more. Its both good and bad. Good because he's a big fat over achiever. Bad because he's making it impossible to do tummy time! Poor kid is never going to be able to hold his head up because he's too busy trying to get on his back. His little billy goat preemie cry is slowly turning into a very loud newborn cry. Its very odd having a baby who's cry we can actually hear. With Maryam we had to listen for her cry, with Jax we can hear it pretty much anywhere in the house.
Oh and its GREAT having a baby that cries FOR food instead of crying BECAUSE of food! Ha!

Great Pictures

These two pictures are great because they're of Maryam feeding herself an Eggo. Notice that its not pureed! Woohoo! Proof that she knows how to use a fork and that she's eating solid foods!

Above is just a great photo of the fun Charlie Mae has whens she's with her Auntie Jennifer and cuz Maryam. By the time she was done she even had paint on her face! Her daddy did not like it at all, but she sure had fun!

Here is a super cute picture of our like Cracker Jax. Awe, he's just too cute for words.

The Greats with Jax

Great Uncle Tonce and Jax

Great Grams and Jax

Great Auntie Kathy and Jax

Great Auntie Karen and Jax

Eating update

Maryam has been eating like a champ! Its a bit surreal to see her feeding herself or hear her asking for food. For example, this morning she helped Daddy bake blueberry muffins. After they came out of the oven she actually wanted to eat one! She ate about 3/4 of it before she didn't want anymore. For lunch, her and Daddy were out shopping and she asked for chicken nuggets and fries! He got her some and she ate 2 nuggets and half a small order of fries. For her snack this afternoon she ate a pudding cup, pepperoni, and a candy bar. Then for dinner she asked for mac n cheese. We had bought some ready mac for when Charlie Mae is here, so we made some for her. She ate all but 4 bites of a single packet! That's a whole day of solid foods, all of which she asked for. When she was eating dinner she kept saying, "all by myself" and would feed herself the mac n cheese. I'm so proud of her.

Jax is eating like a champ too! He finally latched on a couple of days ago. So now our routine consists of me nursing him all day and then Brett bottle feeding him at night while I pump. That way we both get the opportunity to feed him. We've done it this way for a few reasons. One is so we both get to see what its like to feed our new born, two because we want Jax to be able to nurse and drink from a bottle and three it gives Mommy a break. When he does drink from the bottle, he's up to about 70mls in 20 to 30 minutes.
Tomorrow we have to take Jax to Children's Hospital in San Diego for an appointment with a urologist. Jax has hydronephrosis severely on his left kidney and mildly on his right kidney. We're meeting to find out if he needs to have surgery or if we can continue on the regimen of antibiotics he's been on since he was a few days old. From what I understand, a series of tests will be done and then decisions will be made based on the results. Wish us luck!

sleeping

Here is Jax above....but can you find Maryam below?

Silly Maryam

Don't you just love her fashion sense? Wigs and boas and spiderman slippers....enough said.

Sibling love.....for now

Leaving the hospital

The only Mommy, Daddy & Jax photo we got during our 13 day stay and I just noticed that its blurry! Ha!

Daddy putting Jax in the car.

Jax relaxing in the car......it was a long night ahead of us.

Cute NICU photos of Jax

An audience to watch him sleep. The hand prints in the background are a gift from Maryam. She painted them on the day he was born.

Relaxing, just growing. Maryam used to sleep this way too. Love it!

Welcome Home!

Jax was discharged today! Woohoo! Will update later with his stats and more photos.
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Happy Boy

So Jax is officially just a "Feeder/Grower". His only job right now is to eat & gain weight. He's managing to do both! He's up to 4lbs. 8ozs. and eating 40-50mls at each feeding.
I know I shouldn't be stressed about feeding him, but I can't help it. I'm terribly afraid of screwing him up. I know I didn't technically screw up Maryam, but I can't help the feeling that I did somehow. And because of that, I'm scared into panic that I'm going to screw up Jax too. I seriously dream about feeding them both, I'm driving myself nuts.
Jax's isolette is decorated with stuffed up toys from our friends. He got a froggy from Kyle & Amy, a Teddy Bear from Eric & Lisa, and a monkey from Jen& Mike. He has an audience to watch over him while he sleeps and eats.
Maryam is coming for a visit on Tuesday to meet her brother. She's not able to come in, so we'll hold Jax up to the window so she can see him through the window. Hopefully she'll get a kick out of him!
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Happy 1 week birthday!!

Jax is 1 week old! Yay! He's up to 4lbs 6ozs and growing. He's still eating about 40mls of breast milk during each feeding and taking it in about 15-20 minutes. He's a super trooper! He is still having trouble breastfeeding. He just doesn't have a strong enough suck yet. But I think in a few days to a week he won't have any trouble at all.
Mommy did a little shopping today for some bedside essentials. I got him a few more blankets so he can have a prettier isolette. I also got him some bibs. He's a messy eater! We've been asked where we're registered. The answer is Target. Its so hard to switch gears and pick out boy stuff after buying girl stuff for the past 3 years.

Tomorrow I hope to start working on a quilt from Mommy. I made Maryam one before she was born. Unfortunately I never got around to Jax's. Lame Mommy.

Maryam is still eating like a champ! She has had some significant weight loss since Mommy has been gone. We're going to put her on the pump everyday to get her weight back up. I don't want to risk dehydration or fatigue. Right now she still has more energy than every grown-up in her life combined!!! But, the proof is in the pudding, which by the way, she LOVES! The scales don't lie.
But she is trying new foods and textures. We couldn't be more proud of her efforts and successes to date. I'm sure the NICU staff is tired of hearing about Maryam by now. We can't help but talk about her the whole time we're there.
I'm just so lucky!!!
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Jax update

Jax is doing really well! He's up to 4lbs 5ozs. He is eating like a champ, thank God. He is up to 40mls in about 20 minutes. They have taken out his IV because he's getting enough nutrients in his milk. Hooray! As of right now, he doesn't have an NG tube either! He had one for a few days because he'd poop out during his feedings. But, the past couple of days he's been eating with no problems.
I'm hearing a bunch of "Maryam doesn't like baby brother Jax", "no baby brother", "no Jax be born" kind of things coming from Maryam. I'm guessing much of it is from having not seen me for a week. After a night with Mommy, she stopped saying all those things. She's not old enough to go into the nursery. They require siblings to be at least 3 years old. Darn! I'd love for her to be able to see him in real life and not just a photograph.
Admittedly, its very difficult being back in the NICU. I was really hoping and praying for a "take home" baby. But, it is what it is. I'm trying not to get too panicky with the sound of every alarm. Thankfully Jax is doing exceptionally well, but unfortunately that doesn't stop my mind from wandering back to what it was like when Maryam was there. To make matters worse, when Jax was born the staff put him in Maryam's corner! They actually still call it baby Langdon's corner! She was there for what felt like FOREVER! I couldn't go see Jax immediately because I was still too sick, but I have to be honest, I'm VERY glad I didn't see him in her corner. Just looking at the pictures freaked me out. The 1st picture is of Maryam's set up. The 2nd is of Jax's set up. Eerie? Uh, yeah! Ha!

Heading to the hospital

Our little family.

My big belly.....big for me!

Maryam kissing baby brother.

Jax!

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!