Sunday, February 24, 2013

J at two months + baptism

A brief post, since I am a week late... J is actually 10 weeks old today!!
2 months, 1 day old, on the way out of his baptism
Can.NOT.Believe that it has been "so" long since he was born. He's a sweet boy who loves to smile and coo and is starting to make even more fun sounds. He is rather fussy sometimes, and I think it's related to his belly being upset or being over tired, so I believe his nature is actually quite pleasant over all. He is pretty alert, and it's my "expert" opinion that he's mentally advanced, but physically behind. I'd imagine that has to do with that pesky CDPX1. His breathing is stable, and generally noisy. He has had some stuffy nose stuff lately, but not too bad, even though his sister has a cold. Thanks breastfeeding!
He has a 100% head size, and is about 50% for weight and height, though most of his weight is his head and most of his height is his torso...so we'll see how all that potentially short stature stuff works out from the cdpx1.
weight - 12 lb, 5 oz
height - 22.75"
head - 16.9"

He hasn't accomplished many physical milestones, but he has done many social ones. He recognizes our faces/voices and favorite toys. He has started trying to suck on his hands. He squirms a good deal on his back, and gets his legs up under him on his belly. He has not rolled over, and doesn't really lift his head.

I'm proud to say that last night he slept from about 8:30 to 4:15 am and then again from 5 to 6 and 6:15 to 8:30. Holla!!! We'll see if that keeps up. He has consistently been sleeping a long chunk of about 6 hours then a few more hours after eating.

His third synagis shot will be this week, and he got the DTAP and HIB shots last week. He will have blood drawn (real style, not the heel prick) for his genetic test and xrays for his spine soon...this crazy snow weather is dampering my plans to get out for those!

His favorite things are being diaperless/naked. I think he'd be that way 24/7 if it wasn't too cold, and I didn't mind getting peed on! He loves nursing and also enjoys a warm bath.

In just a short time longer, he'll be three months old!!

J behaved perfectly at his baptism (not so for G at hers). He slept most of it and was happily alert for pictures :-)

Happy Second Birthday G!

G turned two this past week, and we've had a grand time celebrating. The weekend before was her small birthday party. My parents and sister came into town, but there weren't any friends because we were trying to limit the germs brought into the house, for J's sake. But then he was baptized the next day...so it didn't even matter because she caught a cold anyways. Life goes on.

Her party was Caillou themed, though I would have preferred a Daniel Tiger theme, they aren't selling anything DT themed until 2014, so maybe next year. Caillou is a big name around our house, even though he can be a bit whiny for my taste. The cake turned out pretty good, despite me running out of no taste red dye. It was chocolate with raspberry filling and buttercream icing.


She got a special Caillou Mylar balloon, with three yellow balloons. We got her a special backpack with Caillou people (some that I used to decorate her cake), Caillou stickers and alphabet book, and a Caillou shirt from Etsy. My sister got her some awesome toys from the devil's store (you know, TRU)--foam abc mats, building blocks (The old school wood kind), and foam pieces for the bath (and money!). My parents got her adorable clothes and fun books.

My husband's cousin and wife got her a Caillou Jack in the Box! Some of our friends got her an adorable outfit with fun tutu style skirt that I plan to use for her two year photos; and my bff got her a St. Patrick book (pretty much our family patron saint).

My in-laws got her a fun bubble blowing lawn mower and sand/water table...noisy and messy....grandparent style ;-)

Thank you to everyone!

On her real birthday, there was about a foot of snow on the ground! My husband worked from home, so she was able to play out in it some--including building Bob the snowman and making her first snow angel. She got to drink her first hot cocoa--complete with marshmallows--which she loved.
I sang her happy birthday songs all day, including right when I got her up. She loved that :-) I made her chocolate chip (half whole wheat) pancakes with raspberries, and she helped of course. She got some left over ice cream cake (From J's baptism), and pretty much anything she wanted within reason. She did have a time out on her birthday, which was sad, but discipline must be consistent. Oh, and bonus, she went #2 on the potty! Woot!

Here are a few facts about G as a two year old:

Weight - 25.3 pounds
Height - 34.5 inches
Teeth - all but the back molars
Sleep - bed time around 8:30 pm, awake around 7:30 am, nap around 1:30 for about 1.5 hours
Favorite foods - Golden Grahams, any type of berry, juice box, quality mac & cheese or spaghetti, deli ham, chicken nuggets, peas
Favorite games - anything 'gymnastics' related (she'll get a mommy & me style class in May or June), like doing rolls, assisted hand stands, yoga moves, flips on dad, etc... She also likes building towers, playing school, playing babies, or cooking. She loves chase and pushing her stroller.
G is VERY assertive, like her momma, so I can't be mad about it, though it is very frustrating at times. She's generally a good big sister, and is loving when she wants to be. She's typically helpful and knows where everything's place is at. She uses the potty a few times a week, and sits on it daily (but often with no success). I know she'd be potty trained if I didn't have J to look after too.
She's developmentally advanced in all areas aside from speaking. I do not plan to put her in therapy; she's getting there at her own pace. She's known her colors since 18 months, followed multi-step directions since about 13 months, has been a great colorer since 15 months, and has self-fed for over a year. She knows A, B, C, D, E/F (confusion), G, I/J/T/L (confusion), M, O, P, S. We work on the alphabet daily. She can tell a few lower case letters correctly too. She knows 1 and 2...which is super fun, and we try to work on more but it's not happening yet. She knows the big shapes, and on her M&D puzzle, she knows trapezoid, diamond, pentagon; but I doubt that she'd know them away from that context. I've also tried to do shades of colors, but I think that's pretty advanced, and it generally gets lumped together under "red," "blue," etc... Her fine motor skills are unbelievable and she's got some great gross motor skills too....her doctor comminted on her ab strength and thinks she'd really benefit from gymnastics... as long as she doesn't get too tall, I'm all for that but my husband has his reservations since it's dangerous :-)

We do fun projects and try to limit TV exposure but that's tough some days. She watches DT every day, and knows he's on at 10 o clock, it's hilarious to watch her jump up and down and run around when she discovers it's 10 o clock. Hopefully the weather gets warmer ASAP because we've loved the few days we can get out for walks.

A few little quirks about her-- she has to wear her slippers inside, but lately we've had some success with just socks (it's been a battle, though, if her slippers get wet from accidents and they have to sit our drying, just tempting her that she can't wear them). G pretty much likes two - three drinks at meal time. I know that's something I could break, but I don't mind...so whatev. She's fine with one, but enjoys choices :-) I think that's good for her. She gets freaked out if you tell her something is hot...which is good, safety wise, but sad that she wouldn't blow out her candles on her cake! My husband told her that her cake was HOT, so she wouldn't try to grab the candles...and then she got all depressed/sad about it...It was pitiful and slightly embarassing- haha.

She still loves paying at the store, helping carry bags and put away groceries, loading/unloading packages, opening/getting the mail, and all big kid type things--including helping with chores still. She hasn't really gotten any new ones, still just helping with the dishwasher, dusting, swiffering, helping with the trash, putting out recycling that's safe, etc...

Clearly you can tell she's adorable, and I'm obviously very proud of her. I hope that she can tell how much we love her, and I know she's got such a bright future ahead of her. Can't wait to see what the next year brings, because this past one was developmentally HUGE and we all experienced so much together! Love you bitty girl!!

My sister made this instagram; 1 month/2 years

Thursday, February 07, 2013

Life Lately, again

Perhaps you've been wondering how our day to day life has been...seeing as how most of the blog has been about genetic abnormalities lately.

Well, it's going fairly well. I've got my mind wrapped around this mom of two thing, and we even have hot dinners almost every night of the week, and I take a shower every night. Magical.

G has fully adjusted to having J around. About a month ago, a friend told me that her doctor said kids that young take about 6 weeks to forget what life was like before the new baby. Welp, here we are at nearly 8 weeks, and I'd say she has no recollection of life without him. She asks about him first thing in the morning ("baybeee?"), in addition to dadda (and now she can say "work"), and always has to know where J is if he's not in her sight. She is still very helpful with him, and now enjoys hugging and kissing him--since he's a bit less fragile. He's pushing 13 pounds, so I mean, he's not quite the newborn we brought home.

She's started playing "babies," and her imagination is getting stronger for it. Mostly she puts them to sleep and feeds them--surprisingly, play food, not a weird attempt to nurse them...so at least that's not socially awkward. Although, she does comprehend that I feed J milk, and that's how he eats.

She and I have been doing "projects" daily. It keeps us sane, passing the time, every day all day, with no field trips is really a bore. Recently we made a moose house and a rocket ship. We've made manacotti and a dessert cheeseball for my mom's group potluck. We just made her valentines box today. It's been super fun, and I'm glad we still get one on one time.

I do wish we could go fun places together. I can't wait until we can introduce J to the park, the library, Panera, play dates, target runs, the pet store (aka free "zoo"), and all the new places we might find. Oh, and church. J still hasn't been to church. That place is a Petri dish, you know...

But. He is getting baptized this weekend, so that one is soon to be marked off. I'll be bringing Clorox wipes, and attempting to minimize the germ damage. At least he'll have some immunities from breastfeeding.

We are also celebrating G's birthday this weekend. A picture blog to follow for that, but spoiler alert, it's Caillou themed. Because they don't have anything Daniel Tiger for sale yet. Plus, she still really loves Caillou. Her two Caillou dolls sleep in my old doll cradle in her room, and she tucks them in with a pink blanket.

As for me, I'm doing pretty good. Still having bad pain when I try to get up from laying down after a while, and sitting any way but "properly" is nearly impossible. I can't really lay on my stomach, and my sides are a touch and go situation. It's been 8 weeks. I think it's about time this mess clear up. I was in Pilates ab shape before my pregnancy, but I suppose having 33 cubic cm of fluid reduced the strength of my abs, and then the traumatic birth sitch didn't help either ugh. I get really sad about it when I look at my stomach, and how hard I worked out to maintain my strength... Only to have it reduced to nothing. I had similar feelings after my knee surgeries in high school. I remember how hard physical therapy was back then, and how often I cried. I got through that, I just need to remember I can get through this.

My husband is great, and has been letting me out some. I went to my moms meeting last week, and it was lovely. We had a V-Day potluck and a speaker about being a good balance between Martha (type A me) and a Mary (carefree rarely me). So many of those moms have supported us through the past 2 months, and I'm eternally grateful for them! (If you are reading this--thank you again!!) I've also done the grocery shopping the past two weeks. I went to lunch with my BFF a few weeks ago, and it was magical too.

My husband is also great because he picks up many of the chores to allow me a breather. He actually got mad at me for cleaning the bathroom toilets and sinks... Ha. And he helped me fold clothes last night. What a catch.

Speaking of last night, J slept his longest chunk of time yet...5 hours. We got about 4 of that by the time we got settled in for bed. 4 hours. Man o man, it was Divine.

I'll do a two month post for him soon, since it's this Saturday, and a two year blog for G next week, since that's almost here too. I have plans to get professional photos of their shared "two's" :)

A quick up date though; he is smiling and cooing tons! He's tummy time durations are increasing, but he still hasn't really lifted his head. G gets new words daily, but still says "duh-duh" like a broken record. She's gone in the potty several times, but won't wear big girl panties without crying, and usually doesn't tell me she needs to go until its too late. If I didn't have another kid to attend to, we'd be done potty training for sure.

Sunday, February 03, 2013

Craniofacial Clinic

The Craniofacial Clinic trip was pretty successful, and generally had good reports. We got there a bit later than I had wanted, but I had forgotten to account for rush hour in the morning...we weren't late though, so that's a victory. We were up a little after 6, and out the door around 7:20 am, with no time to stop at S'bucks...bummer.

We had to wait for about 45 minutes before we saw anyone, because it's a first come, first serve order. We did have a light/continental breakfast provided, so that was a nice feature.

In that time, I walked around with J in the Beco to keep him asleep, but then decided I should nurse him before he got grumpy while seeing the specialists. While I was nursing him, he had a super smelly/messy diaper and needed a new outfit. At least I had over-packed the diaper bag, and had plenty of everything.

The first person we saw was someone who makes sure we have a way to pay for things, and know about all of our options for financial assistance. Thankfully, we have great insurance and good enough means, so that was a short visit.

Then we went straight to the orthodontist and speech people. The orthodontist had a surprisingly good outlook for J's jaw. I was a bit worried that his bite would be messed up due to the absent/tiny nasal bone--I thought it may have affected his upper jaw's development. The orthodontist had a similar suspicion just from looking at him, but when he felt in J's mouth (including coaxing him to bite down), he was happy to report J's jaws appeared to have a "good relationship." He said we won't know about the typical crowding problem many kids have (why many 'need' braces) until he is older, but as for problems right now--he didn't see any. I attribute some of this to breastfeeding. Not only is it great nutrition, it helps the mouth and jaw finish developing properly after birth... though I know there are some jaw problems only surgery can fix, and to have avoided those, I'm very grateful.

The speech pathologist informed us that it's likely J won't have any speech issues related to his small nose and nasal passages. He might pronounce N, M, and the "ung" sound differently (as if he has a cold)...but he might not...and definitely wouldn't after his nose surgery. Those are great things to hear. They were all really nice, so I picked their brain about G and her bit of a speech delay, but I'm not really worried about it. As I've mentioned before, I truly think her issue is that she's so far advanced in other areas... She's talking better than ever and has tons of words, but isn't saying phrases yet, and still says "duh-duh" for a lot of things, rather than the word. Anyways....

Then we went back out to the waiting area. J was hungry, so I nursed him again, and changed his diaper. He got fairly grumpy, but ended up falling asleep as we went to see the child development psychologists. There wasn't much to talk about yet, but I did treat them like a regular ol' counselor to get some things out there... especially how I felt guilty for burdening my husband with all of my emotional stress, and yet he doesn't seem to reciprocate much. He swears it's fine and that he's okay with it all....so God Bless him for that. The psychologists were also good for reassuring us that J is pretty much a normal baby--just with a special nose and rare genetic condition. He's doing all the right baby things. Hooray. They also told us their role in the future...preparing us mentally for surgery, preparing J for it when he's older, and also giving us/him tactics for combating any social issues that might come up since he doesn't have the most normal looking nose.

After another brief wait, we finally saw the man of the hour...J's plastic surgeon and ENT doctor--Dr. A. We really like him, and he maintained that J is doing super awesome, and we just need to push off surgery to as close to kindergarten age as possible.

He said that he's consulted with his previous professors and colleagues in the same line of work, and reported that they all agree with waiting until around 5 or 6 for J's surgery. He also said that J's situation is so rare (the severity of his nasal abnormality with no other pressing issues), that doctors really only see 1 or 2 cases in their entire careers. He said that, of course, we are welcome to search out a second opinion, but that he see's no need to do surgery any sooner than age 5, unless J has some reoccurring illnesses that larger nasal passages would prevent, or if he takes a turn for the worse. One of our biggest fears is J ending up with a tracheotomy, but both the NICU doctor and Dr. A feel that's not even an option unless something completely crazy happens. Dr. A made it sound like we'd just do J's nose surgery sooner, if needed...but he's still optimistic that J's in great health and has natural survival mechanisms that are really good.

Dr A. also said that J's developing a flattening spot on his ear, because he likes to lay on one side more than the other. He gave us some 'physical therapy' type things to do to stretch out his neck muscles and encourage him to turn his head more. I don't think J likes it very much, because he sure has cried a lot whenever we've tried to do it. I don't want him to have a messed up ear too, so we are trying...but we are being less adamant about it than I think Dr. A intended...but in our defense, J's already started turning his head a lot more. He had awesome tummy time yesterday and is freely turning his head better already.

After Dr. A, we were done with our marathon morning, and will go back to see him in regular office hours when J is 6 months old.

The hardest thing in all of this is that we keep hearing good reports, but I'm so scared to be happy about it. Yes, of course it's good news....but it's also scary to know how quickly it could go bad...or that there are tons of ****'s (yes, but or in case of or unless there's or if this) when it comes to J's health. So, yes, we heard all good news at J's doctor appointments, but it's still a proceed with caution situation. Praise God things are so positive right now, and prayers that they continue to be.

I'm a lucky mom, with two sweet kids

NICU and Midwife Follow-up

Last week my mother in law came into town to watch G while J had two big appointments. She also watched both kids while I had my 6 week post-op appointment. I think she enjoyed spending time with the grandkids, and we really appreciated the help.

First up was J's NICU follow-up appointment. It was surprisingly more informational and meaningful than I thought it would. I had down-played it so much in my mind, mostly because he was only there for 4 days, that I told my husband that he didn't need to go. While it's not bad that he wasn't there, I do think he would have preferred hearing the info straight from the doctor and nurse. My bad, honey.