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Thursday, July 03, 2008

Happy 4th of July

The 4th of July holiday is one of my favorites. Typically I've always spent it in the mountains, enjoying all of the small mountain towns have to offer in the summer. This year, we obviously won't be going anywhere.

I had a LOT of contractions 2 nights ago and was worried, but things seem to have settled down. I did end up going into see my peri yesterday, did a non-stress test of the baby, and he's doing fine, (as I thought as he's moving like crazy, which is reassuring during all those contractions), but they obviously don't want me contracting a lot due to the previa. I was given some pill form of Terbulatine in case I have a lot of contractions again.

I'm sleeping horribly, between contractions, worrying about bleeding every time I get up to pee, mccarthy baby boy kicking his mamma like crazy but mainly mental stress and worry. 2 nights ago I think I slept about 3 hours all night (i read 2 books!)

I had another dark bleeding episode over the last 4 days or so (I think I mentioned) but it seems to have also quieted down, so just taking things day by day.

I turned 32 weeks yesterday, and my belly is really finally growing!

I've had a bit of reflux (not too bad), which I laugh at as I never had that before with my first (short) pregnancy! I welcome all of the uncomfortable 3rd trimester pregnancy pains, to me (and all the micro preemie moms I know), they are wonderful! You'll never hear me complain about being too big and uncomfortable with pregnancy!

Here's a belly picture at 32 weeks! (I haven't done any belly pictures as Brian hasn't been home, so I finally did a self-portrait today). Nice circles under my eyes, huh?


I'm going a bit stir crazy (I was soooo happy to leave the house and go in the car yesterday to the doctor's office in SF). Brian has been working a lot (5 days this week, 24 hr shifts) so once again, my life-saving nanny has helped us out and is working 11 hour shifts. Kaitlyn is having a rough time of it, she doesn't like mom not being able to bathe or feed her. She seems to be acting about a bit, but I think is a lot happier having mom home at least.

Moms in my community have been amazing: I've had about 6 friends/neighbors/twin club members bring me meals. Sometimes they've even purchased other items that I'm out of (soap for Kaitlyn, wipes) as I'm not taking care of her and run out of things before I realize it (and I can't get to the store and Brian is working so much). Without the meals I think I'd be living off of frozen dinners. Thank you thank you everyone, you guys are an amazing life-saver, and makes me realize how much moms stick together and really help out others in need.

Kaitlyn updates:

Feeding: We are letting her eat something more toddler specific with every meal. Her chewing still isn't all that great, and if this was all we fed her she would never get any calories in. (like a bit of pizza, waffle, chicken) It takes her a LONG time to chew. She's vomiting now about 1x every 2 days on average. She's still on periactin (our life saver drug of choice). The Pghlem monster seems to be totally under control with this drug. We have an allergist appt in a few more weeks (hopefully I'll be able to take her and won't be in the hospital). We'll have to go off the periactin a week before the appointment and that is worrisome! She is battling us when it comes to drinking milk. It's really, really tough to get the 3 ounces we get in her with each meal, but boy-oh-boy it's a battle. I thought kids were supposed to like milk. We've resorted to strawberry and/or chocolate, with little difference in her willingness to drink it. One meal a day we substitute V8-Fusion juice (which has veggies in it too) and she drinks it with no problem.

She is not liking wearing her glasses suddenly and continues to look out the top of them when reading close up (or holds things super close without our without her glasses). We have an eye appt for her in 2 weeks.

The last 3 days in a row she's refused to nap. After about an hour or so we (or my nanny) takes her out. she at least is falling asleep promptly at 8pm, otherwise, she'll stay awake until 10pm. I guess her little body just needs 12 hours of sleep, maybe we are done with a nap? oh no!~

We are holding off potty training again until the little guy comes. With my being out of commission and not knowing how she'll react once he comes, figured it was better to just let things be for the time being. We try on the potty (she's willing to sit and TOTALLY understands the concept, but basically refuses to poo/pee on the potty at this point). So it's going to have to be a cold-turkey, no more diapers session, tough to manage for me at this point on modified bedrest.

I'm concerned about her developmentally/socially. As she is getting older I'm really starting to notice more and more differences between her and similar aged children (even taking into account her adjusted age vs chronological age). I'm worried. Her therapists say she's def not autistic....we'll see how things go once I go through the IEP for school (after age 3 when she's finished with regional center).

Everyone says, "oh she looks so great" which is tough to hear sometimes, as I know she's behind and they may or may not see it too, but they are comparing her with where she's been (a 1.5 lb baby). Yes, I know she's doing well, for how sick she WAS, but damn-it, I want her to be "normal" now....(I know what is "normal"). I know she's going to have lasting effects from her extreme prematurity her whole life and it breaks my heart.

She will be starting preschool in Sept (a very small class size (8 - 10 kids) 2.5 hours 3 days a week, within walking distance to our house). I think it will be very good for her and will really be interesting to see how she does. Here are some of my observations that I think are a bit "strange" or out of the ordinary:

1. She doesn't like to make eye contact (still)
2. When other kids try to grab her hand and play with her she pulls her hand back and says, no, no no. And plays by herself.
3. She focuses on objects instead of people. She's always interested in what someone is carrying, not the person.
4. She doesn't like to be held
5. She rolls around on the couch/floor trying to get sensory input
6. She repeats a lot of what we say verbatim (and remembers it to), but doesn't come up with many of her own sentences
7. She's pulling out her hair and putting it in her mouth (loves eating hair, threads, etc).
8. She really likes having something in her mouth most of the time (her blankie, her hands, bites her nails, a toy) and can get upset when we take her hands out of her mouth. With her blankie she likes to tear it to threads so she can eat the threads

Hmm, that's all I can think of now on top of my head.

Happy 4th of July to everyone! My brother is coming for a visit (last time he was here when I was on bedrest I ended up in the hospital and delivered 2 weeks later, so let's hope he doesn't bring me that "luck" again!) I MAY go to the county fair, (we borrowed a wheel chair from Kaitlyn's Easter Seals), it's close to our house so I'm really hoping all will be ok and I can "live" a little (and watch Katilyn's joy at the animals and rides).

13 comments:

Mir said...

We parents love to worry, don't we?

Have all Kaitlyn's teeth come in yet? My son is 2 weeks older than Kaitlyn's actual age, and his fingers are in his mouth constantly. Come to find out, his two-year molars are coming in. They can take a few months, and are apparently kind of painful. He never did this for any other teeth, just these molars.

Also, he has some oral issues. He sucks his bottom lip constantly when he's tired, thirsty or upset. Even though he's almost three, if he were just a smidge more adamant about having something in his mouth, like Kaitlyn, I would consider re-introducing a pacifier. Maybe they both just need a little more time to work off that sucking reflex?

Just a thought!

Sarah said...

Just wanted to say we are still thinking of you. Mila is getting her gtube in just 5 weeks... without your blog, I dont know that i would have had the courage.

Anonymous said...

Just an idea about the milk - when we were trying to go to all oral feeds to get rid of the tube and had to get milk into Sarah, we put vanilla Carnation instant breakfast mix into her milk, partly to flavor it so it would taste better to her and partly because it added so many calories and vitamins to it. Sometimes we used chocolate, but she most often preferred the vanilla. You may have already tried that, but if you haven't, I just thought I would offer it.

As far as the mouth stuff, Sarah has been diagnosed with several sensory processing issues, and she has almost all of the mouth things you described (except she doesn't pull her hair out, she just manages to find every stray piece that ever exists to get it into her mouth). She is FOUR and a half, and she STILL puts little toys into her mouth. I can't tell you how many times I have told her to spit things out before she accidentally swallows them. The OT says it is all part of her sensory stuff. Anyway, don't know that it is relevant for you, but found it interesting to hear of another child with such similar oral behavior.
Shellie

Anonymous said...

hi, liz-- i am reading your blog from london--we are here for 5 weeks. i am so glad that you hit 32 weeks! i hope you get some rest and that little baby stays in for a while longer. you seem to have a wonderful nanny and friends. i hope your husband is safe with all these fires in california. thinking of you...nandini from palo alto in london now!

Big Ali said...

Wow. 32 weeks, congrats. The baby would still be early but imagine all the benefits he has gotten just by you being able to last the past 2 weeks on bed rest. Keep up the good work and when it gets hard keep thinking positive.
Mama Ali

Sarah said...

Liz - not to be a comment hog.... Mila is having her gtube put in endoscopically. She'll be put under general anesthesia, and they will insert the endoscope into her esophegus & stomach, have a peek around, make a stoma from the outside, insert a guidewire, pull the guidewire up through her mouth, attach it to a long feeding tube, and pull the entire thing back through her mouth and into place in her stomach.

I am so proud of you for hanging in there liz!!!

Princess Abigail said...

You know, all children are different and progress at different rates. The milestones happen at different times for different children, and Kaitlyn was an incredibly early baby - all that time lost in the womb takes its toll on natural development. I do understand your concerns about little Kaitlyn, I think probably any mother would. Why don't you ask her paediatrician about the things you listed .... he/she may be able to comfort you. Kaitlyn is gorgeous, and the Bernard Bunch in France has taken such a shine to her!!!!s\

Deanna said...

Glad to know that the little gaffer is still giving you a stomach full!

It looks like you have been doing some research. I do not like to offer any sort of wisdom... but continue to monitor her behaviour, and report the findings. Go with your gut instincts, and don't let yourself get fooled by "it's and age thing", if something is telling you that there might be something going on, then seek help.. the earlier you can find intervention & supports, (speech & occupational therapy) the better Kaitlyn would be.

Continue to take it easy.. as easy as you can at least.

Anonymous said...

Has she had an eval by an OT who is certified in SID? Its terribly obvious that this is sensory stuff and not autism just from your observations listed and a qualified OT will work miracles with your kid. Try reading the out of sync child for some at home tips, too.

23wktwinsmommy said...

Thanks for the update...I've been thinking about you this past week wondering how you were doing...and of course Kaitlyn.
It must be tough having so many things to worry about, but I guess that's how a lot of us are. Hopefully with this list of concerns you will find a specialist who will take them seriously and give you advice. Maybe it's nothing, who knows? But a professional should make an effort to observe these things and let you know their opinion. And I know what you mean about people saying she "looks great." I get that a lot and I know they're saying it based on mine being former 23 weekers. But sometimes I do think this causes people to overlook the things that concern me as their mother. Keep us updated with Kaitlyn's progress!
And I hope you get to go to the county fair!!!

Stacy said...

Although Conner is only 11 months old (7 corrected), I have been really concerned about his eye contact. He rarely makes eye contact and does what you said about being more interested in objects rather than people. I worry about it alot already. If you find out anything, I would definately be interested to hear. We are going to see a developmental pediatrician in a few months and I am sure she will be a downer, but if she tells me anything, I'll be sure to pass it on. I am rooting for you to stay home for at least a few more weeks.
Stacy
www.aboutthelarsons.com

Kristin said...

Hiya Liz,

Was thinking about you today and came to check up on you. Life has been crazy as I started a new job 2 weeks ago and haven't had time to breath let alone catch up on blogs.

So glad to hear you're home.. just keep your due date in mind that it isn't far off and that from this point forward everything is just growing and that most development has taken place. :-)

Hugs

K

Rebecca said...

Hello. My Caitlyn has Rett Syndrome and is also a huge chewer. I just wanted to share with you this link. http://store.schoolspecialtyonline.net/OA_HTML/xxssi_ibeCSrdSrchResults.jsp?command=text&attr2=0&w=off&as=1&t=0&p=1&q=10&render=0&c=e%3A8%2F%2FStore%2BID%2F%2F%3Aeq%2F%2F10021&attr1=chewlrey&pschli_pses=ZG1F4E989B4D6AB56F6064B2F93D6B03E03AF1E529351B19E894172B2C2FCA71FC8D6E3B6CD33930E7F1FC16C29469150D4E74E1A28DAECD49&pschli=QmxL8FK8YuDhUjUWZraae0a4%3AS

Chewlry has done amazing things for our mouthing issues. Caitlyn no longer chews on her clothing. It hasn't completely taking away the hand chewing, but that is part of her uncontrolled behaviors that come with Rett Syndrome. We will take whatever we can, though. Best of luck to you guys, and I look forward to reading about the new baby!