Video Crazy!

Romy's first taste of cereal.



Romy hates this noise and gives me the saddest face ever!



Romy Army Crawling!

6 Months!

Little Romy is 6 months old! What an old lady! She had her 6 month check up yesterday as well as a home visit from her Early Intervention nurse. It could have gone better, but it could have also been WAY worse. I'll start with the bad news....they want to evaluate Romy Raye for Cerebral Palsy. Let's not freak out....it's just a precaution. They just want to catch it early if its there at all. Her muscle tone is a little higher than most babies. It's not completely abnormal but not completely normal either. Her legs, especially her ankles are very stiff, and they're hard to manipulate. We still aren't sure if her upper body is stiff or just strong for her age, remember, she did roll over really early. They're also concerned with her speech. She isn't a big "talker" and doesn't smile a whole lot. In fact she rarely smiles at me. She also doesn't "reach" for things or show much interest in wanting to play with toys. But she does like to look at them and watch them light up. We can't forget that she's barely 3 months old adjusted, she has a lot of catching up to do. All of this is just part of the early intervention tailored to preemies, so as of now it's all precautionary. So Romy is adding a neurologist, a physical therapist and a occupational therapist to her list of "employees."

Well, on a lighter and much happier note.....Romy is growing at a steady and healthy rate. Although small, everyone is pleased with her growth. She's 9 pounds 9 ounces and 20.5 inches long. She's in the 3rd percentile for her adjusted weight and head circumference. She isn't on the charts for height, but I think she gets that from Daddy, he's not exactly a giant. She also got her shots and let me tell you, this girl is one tough cookie. She cried for I'd say less than a second. We also got the okay to start her on rice cereal! The doc said to try once a day for a few weeks just to get her ready for the good stuff. I tried it last night, and the first few bites yielded some faces and spitting up, but after that she was loving it. See, so she is a true Filipino....she likes rice!

And are you ready for this.........she army crawled! I don't know if it's because she has CP or it's because she doesn't. Hard to tell. What I mean is, it could be related to muscle stiffness, or she could just be ready to take off. I think it's the latter. She'll scoot around for a minute before she gets frustrated....very cute. Right now I'm trying to upload videos to post, but it's taking a while. I'll get them up sometime today though.

I also wanted to include some info about Cerebral Palsy, here's a link to learn more:
http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm
I never really knew what CP was until Romy came along. I urge you to read up on it!

If she does have it, it's mostly linked to one of two things. Her Intrauterine Growth Restriction brought on by the preeclampsia (I think this is unlikely because she didn't have any brain bleeds or white matter shown on her head scans taken days after birth)
Or the lack of oxygen her brain received when her trachea was torn during one of her many intubation's.

Only time will tell and it's in God's hands. He's never let me down, and I don't believe he'll start now. Just please say a little prayer for her. Thanks guys! I will end this entry with a few pictures of my gorgeous little gal.


Her heart belongs to Daddy:)....and Mommy!


Romy saying her prayers.


Yuck!


You can make out her umbilical hernia underneath the washcloth. Check out those little toes!

I HAD to!

My adorable nephew, Christopher, learned a new word......

A long overdue Thank You.

Thank You Deva, Mark, Tony and Spencer! I love my bunny and I look at her funny when she talks to me. I love my little pink Bible too, I tried to eat it but my Mom wouldn't let me!

This is me sad, because I haven't had the chance to meet you guys yet. Hopefully soon!

Drool Bucket.

 

Cute, huh? Romy Raye is such a little drooler. Anyway, I guess an update is in order. Romy had her MRI last Friday. It went well, they decided not to sedate her which lifted loads of worry off of me. We just starved her overnight and fed her a ton, gave her a good burp and then I rocked her into a deep sleep. She slept the whole time. I don't have the results and probably won't for at least a few more days. I don't mean to complain but the care Romy has recieved since we returned from San Antonio sucks. I have to hound doctors and exaggerate everything just to get her seen. The average wait time for an appointment is 5 weeks. I have noticed that civilian doctors care very little about what happens to my little girl. I want to throw rocks at them. I have yet to meet her Primary Care Manager and she's almost 6 months old. I've been trying to have this MRI done for the past 6 weeks and it finally happened only to find out that they messed up her paperwork and attached her to the wrong doctor. Now I have to wait longer to get it all straigtened out. My biggest fear is that her hemangioma will grow rapidly and invade her eye and attach itself onto nerves and result in loss of sight in that eye and making it impossible to laser off. But anyway, I took Romy down to San Antonio to get her hearing tested and have a check up with her amazing NICU docs. She passed her hearing test. She just barely passed, but we'll take it! They're going to re-test her next month just in case. It took forever! She wouldn't sit still and kept yelling, but she tired out after a while and just let them do it. One of her NICU docs examined her and said she looks great. He also decided to start the process to get her umbilical hernia fixed. Although I love her belly bubble, it is pretty big. It's uncomfortable for her to sit strapped in her carseat because the buckle presses on it. I also get scared that it will get snagged in a zipper. For those who haven't seen it lately, it pops out about 1.5 inches from her stomach. Sometimes she'll give it a squeeze, it's pretty funny. She's making more noises now. She says "Ahhhhh!" and gurgles a lot. She's eating like a champ sometimes 3.5 ounces in one sitting.I remember when she would eat 1 teaspoon every 3 hours, so she's come a long way. Her sleep schedule is kind of crazy, I wouldn't even call it a schedule. Ray's Mom said he was a sleep fighter and I think Romy has inherited this. She'll nod off in my arms or in her swing but the second she sees her bassinett she's wide awake again. I put her down between 7:30-8 pm but she wakes up often until I go to sleep with her. I won't lie....I let her sleep in bed with me. Horrible habit I know, but she sleep SO much better that way and so do I. She usually has a 1-2 hour nap mid morning and a few 20-30 minute naps the rest of the day. She has a little jumper thing that she likes to sit in, but she's lazy and makes me bounce her, she refuses to do it herself.

Happy Father's Day!!!

 

Happy Father's Day Daddy. We miss you and wish you were here to celebrate your very FIRST Father's Day. Be careful out there! We love you very much!

4 generations of LOVE.

ROMY RAYE AND HER LOLA. (Great Grandmother)

Being a Mommy.

My sister ,Lisa, has two adorable kids, their names are Gabrielle who's 8 and Christopher who is almost 2. I've spent a lot of time with them through the years. Especially Gabrielle. I was a part of her day to day life for her first few years and becoming pregnant, I thought I had a good idea of what it would be like to be a mother because of all the time I've spent with them and watching them grow and learn. I didn't know squat. Here's a list of thing that I've learned in the short time I've been a Mother.

-Babies are manipulators and very selfish! They don't care if you haven't showered or eaten anything all day....they want to be held/changed/rocked/fed....NOW and always.
-They're really good at making you feel guilty. I put Romy down for a nap and started doing some much needed cleaning around the house. In the process of plugging in the vaccum cleaner I accidently unplugged her moniter. Little did I know she was in the room crying her face off. I mean tears and snot running down her bright red face. I felt like killing myself.
-I can do anything and I mean ANYTHING with one hand tied behind my back. Like I said, she wants to be held ALWAYS. My left hand is always clutching her around wherever I go. I bought a baby wrap that she can sit in while being literally attached to me, while both of my hands were free. I thought I was so smart! She wasn't fooled.
-Sleep, who needs it? ME!
-I act like a crazy person. I act like a weirdo just to get a reaction out of her. Silly voices or animated faces. I don't speak english around that kid, just gibberish and excessive baby talk. Her usual reaction is a blank stare or a fart. But the occasional smile or happy gurgle makes it all worth it.
-I get excited over poop. Romy has always had trouble pooping. She's on so much iron that it makes it tough for her. So when it does happen, I do a happy dance.

Who knew?

Finally............

Romy has been smiling consistently the past 2 days, but she would never let me capture it on camera. So I had to trick her by hiding the camera and snapping it as fast as I could. The last picture shows how mad she gets when I do that.....what a funny little lady.

I hate Lasers.

Romy is going to have her hemagioma treated with lasers. Hopefully it will make it completely disappear or at least shrink it down a lot. She's going in for an MRI in the next week or so, then sometime soon after that she'll have her very first "cosmetic" surgery. They keep calling it "cosmetic" but I think it's more or less to save her vision in her left eye. They have to put her under again for the MRI...dammit. I know she's been under twice before, but seeing a drugged up baby, especially MY drugged up baby never gets easy. Pray for that little drama queen. Oh man, I almost forgot, she finally crossed the 20 inches tall mark. 20.5 to be exact. She's also 8 pounds 10 ounces. She hasn't gained much weight in the last few weeks, but she's been puking a lot. The docs put her on Zantac and that seems to help so hopefully by her 6 month appointment at the end of the month she'll be close to 10 pounds! She looks like a little sumo wrestler, her cheeks jiggle whenever she moves, and she's getting folds up and down her arms and legs. Still no consistent smile, although she gives me crooked ones every now and then, but she won't show me her gums or her dimples. No cooing either, but she sure knows how to scream. She does attempt to coo I think, but she just ends up blowing raspberries, it's so funny. She also starts panting when she gets excited and throws her hands in the air. She likes to hold stuff in her hands now. I put a little miniture irish flag in her hand and she held onto it for close to an hour. Anything that touches her face she attempts to eat, whether it's my shirt, my hair, a pillow or her hand. Her sheets and her glow worm stay soaking wet with drool. She likes to "stand", she always wants to bear weight on her legs. It's cute, it looks like she's dancing sometimes. Hmm, well I think that's it. I'll keep everyone posted on her MRI date. Thank you guys! We love you.