Thursday, February 21, 2008

Finally an update

Hi everyone, sorry for the long delay, I think the flu bug took a while to leave me, and then I had back-to-back family in town for almost 2 weeks, which left me very little computer time.
But the good news is that today we had a detailed NT ultrasound (to check the neck folds for signs of Downs and they didn't see anything). This doesn't mean that I'm out of the woods, remember every year past age 35 your chance of having a downs child goes up highly which is why they recommend all women over 35 have an amnio. Now you know what my opinion is on amnios right?

I've also had a blood test in which I'll get the results back in a few days. It won't be guaranteed results, there are sadly a lot of false-positives, I'm just trying to stay really positive myself and say that our little peanut is just fine and perfect and that we won't be needing an amnio.
Our little peanut measured exactly where they should be, I'm 13 weeks and 1 day - which means I'm out of my first trimester, and thankfully am starting to feel a bit better also.

We got to hear the heart beat for the first time, good and strong.
Here are some pictures from today's ultra sound. We even got to see 4D pictures, (which to be honest makes our little peanut look a little alien-like), but still very cool to see all the details. Still too early to tell sex (what you see is the umbilical chord). Brian's convinced it's a boy (even before today). I don't really feel strongly one-way or the other. Last time we KNEW it was going to be girls even before we found out. We'll have to wait 5 more weeks or so to find out.

A very clear little foot!

The little peanut spent a lot of time with his/her hands near his/her mouth. Now if you recall my u/s pictures from our prom princess (our angel Corinne) whose water had broken (prom), you'll appreciate all that beautiful amniotic fluid like I did!

The 4D picture! Wow, pretty amazing isn't it? Looks like they are a thumb sucker! Look at those beautiful fingers and toes!

We saw Perinatologist Dr S, who was the first Doctor after my water broke who put it all bluntly what our outcome options were. He remembered that we had flown to Florida to try an amniopatch with Dr Quintero (which sadly didn't work). He wanted to know how Kaitlyn was doing and whether she had CP or not (which is so common for Micro preemies. We said that we were very, very fortunate that her motor skills were quite good.

I also saw my OB for the first time (this pregnancy) as I'm officially released from my RE (reproductive Endocrinologist) and I'm done with all fertility meds! Yeah!!!! That's a huge relief. She went over all the pregnancy do's and don'ts again with us....This is really happening. I'm GOING to carry this little peanut to term (well, it won't be 40 weeks, as I'll have to have a c-section, and it will be scheduled either 1 week early or 4 weeks early due to my previous incisions). So although my due date is 8/27 (and my birthday is 8/25) I think this little one may be a Leo (birth dates before 8/23) instead of a Virgo like me.

Update on Kaitlyn:

Well, good news to report on many fronts:

Kaitlyn hasn't gotten sick one single time (knock on wood) since just before Christmas! Wow! She (nor Brian) never caught my flu-bug. Her weight is doing great, I think she might be nearing 25 pounds. That's the quickest she's every gained weight. We are considering cutting back on some of her night feeds (she still gets 8 ounces of BD (Blended Diet) via gtube at night).

She's eating, really really well! She's advanced onto some regular toddler food. Now, this is strange for me to type, acknowledge and even truly believe. My daughter didn't eat ANYTHING by mouth last July. Now she is eating: goldfish crackers and LOVES them! Melba toast, Beef, pork, stew, mac-n-cheese, rice, french fries, oatmeal, spicy things, yesterday she ate a WHOLE tofu dog (not mashed) and dipped it in ketchup. Most oral averse kiddos I know of have a sever adversity to any different kinds of foods, that doesn't' seem to be the case with Kaitlyn, she loves trying new foods, it's just a matter of chewing them that's the issue.

Now, we still have a way to go and we still have a lot of work. Most of her nutrition we still have to fork-mash to a puree consistency. She still chews primarily with her front teeth, she still gags and still vomits about 1x a day. She can't handle a regular apple or orange (she'll just put it to her mouth briefly then hold on to it), but loves dried apple chips and fruit strips.

We've completely discontinued her watching the DVD, and now entertain her with my singing (not very good) or music on in the background. We play counting games, letter games etc. as the meals still can take quite a while.

Although she's still not much of a milk fan, we've tried some chocolate milk and have almost gotten rid of the straw-squeeze bottle we've had to use to get the milk into her mouth. We now are working with an open cup, but we have to hold it to her and pour into her mouth (but she will usually open her mouth). I often have to bribe and say 5 more sips, then you can have some more mac-n-cheese.

She is just starting to feed herself (which a toddler by age 2yrs 4 months) would def. be doing on their own. If she likes the food she's quite interested. Otherwise, we still feed her as a baby would be fed. I took a video last night of her eating rice on her own. I stopped the video and didn't get her refusal that happened a bit later. You'll be AMAZED at the video (but keep in mind a few minutes later I had to hold her hands down as she was batting me and the milk glass away). We can never let her get her way when it comes to refusing. She can't learn that she can get away with it. That's the primary deal with the Behavioral Therapy.

On that note, Kaitlyn's Feeding therapist (Dr Patel) has been on vacation, and we aren't due to see her again until March. I really, really am thinking that we may not need any more visits past this one. WOWEEEEEE!!! I'm not sure what else she can do to help us at t his point. Kaitlyn just has to continue to learn that she needs to chew on her back teeth. Hard to say if it's behavioral or not. Maybe so, her gag reflux is so strong, it's become a very ingrained habit.

Language and talking! Wow. Her language has absolutely taken off. She's now talking in sentences. We started with making her say: "I want...." instead of just "up" when she wants up, or open, now we make her say "I want open peeze". She learned that in just a few days. Last night was the lunar eclipse. Kaitlyn LOVES the moon and I explained that the moon was hiding and it was an eclipse, she picked it up and said, "moon hiding, eclipse" and kept repeating eclipse all night. Dad took her to the fire station, and now she says, when asked where dad is, "firehouse, down-the-pole", "firetruck" and "football" (as they were watching football when she was there).

She's into labelling EVERYTHING. She will repeat something over and over until we acknowledge her. she'll say, red light, red light red light, until we say, "yes, that's a red light" She knows her entire alphabet, even singing the alphabet song, counting in English and Spanish, and understands our Nanny's instructions in Spanish completely.

With her paralyzed vocal chord, she continues to be very quiet, but we can hear different tones of her voice. Sometimes her "voice" really is made using her chords, the other time it's more of a whisper and harder to hear.

She has the occasional 2 year old toddler tantrum (mainly if mom leaves) or I take her tooth-brush away from her, but she generally is a really, really good little girl.

We got new glasses awhile ago (forgot to mention that) as they were too big and she didn't wear them. Well her square glasses are now too small and she's in her other glasses all the time. No more chord behind her head, like a big girl!

Developmentally: Kaitlyn still is having sensory issues. She is still very hyper, and has a hard time sitting still. When we go to Easter Seals play group, she's the only one that doesn't sit during music time (and she loves music). She's getting therapy 4x a week still, which is hard on mom:

1. Speech/oral motor skills, 2. Easter Seals Play group, 3. OT (for her sensory issues) 4. Easter Seals Teacher

We have an eye doctor next week. She' still getting her monthly synagis shots against RSV. She's now really starting to hate going to the doctor (it never used to bother her before) as she knows she's getting a shot. I know 3 year hold micro preemies who have gotten very ill with RSV so as much as I hate that she's getting the shots, we are very, very fortunate that her insurance is still covering it (as it's over $2K a shot every month through April).

My mom was in town for 4 days and then Brian's parents were in town for 8. Grandmas and Grandpas loved seeing Kaitlyn, and Kaitlyn had so much fun. She says things like "grandma suitcase, open presents". We had a lot of fun, when my mom overlapped, we all went to the wine-country and went wine tasting (well I didn't taste, forgot to take any pictures) and Kaitlyn stayed home with our nanny, we went to the beach, we hiked to the top of Angel Island after taking a ferry there. Lots of activities (little time to update my blog).

Again, sorry for the long delay in this post, thank you again for all your continued support (if you are still reading this).


Anonymous said...

Thanks, Liz, for your nice update. We've missed you. So happy to hear about Kaitlyn's eating! I didn't realize she was doing so well in this regard.

: ))))

(not really ANONYMOUS but don't know how to choose another "identity".

Amy said...

I was smiling the whole time reading this--for your pregnancy, for Kaitlyn's progress, and most CERTAINLY for her eating and decreasing amount of vomiting. Yay for all of you!

Anonymous said...

What wonderful reports on all fronts! I have read your story (and played virtual cheerleader) for a long time, and it is a joy to see that girl putting food in her mouth! What a treasure to see your beautiful sono pictures, and the lovely time you enoyed with family. I have never been to CA, so the scenic photos are like a travel guide to this east coast girl. May God continue to bless your family!
Lori C. in VA (formerly FL)

Anonymous said...

Wanted to pass on some good info that I got from other micro-preemie blog moms (Eliza Grace & Hallie). They have discovered that Omega 3-6-9 has really helped their girls with language dev. and I have read that it works wonders for children with attention issues. We are going to try it as my daughter has some challenges with attention and hyperactivity also. Anyway, they recommended the Nordic Naturals brand and 1 ml a day.
Just thought I'd pass on the great research that they both did.

Anonymous said...

and BIG CONGRATS on baby #2 and the wonderful progress Kaitlyn has made!


Anonymous said...

Liz & Brian - we are thrilled for you on all fronts - Congrats & lots of hugs & best wishes!

Bern, Paul & Isabel xxx

abby said...

WOW! WOW! WOW! I am so thrilled for you guys on all counts. At some point I may pick your brain about what worked on the chewing front but in the meantime, we are finding everything that Kaitlyn is doing so very inspirational and we are thrilled to hear about how well the new bean is doing.

Jennifer said...

Oh my gosh Liz!!! This is so amazing! I am so thrilled everything is going so well!!! I still can't believe that she's doing so well on the eating front in such a short time! Way to go! :D

Shannon and Carey said...

Great news all around. I read the whole post :) I'm glad your life is on the upswing girl. You and your family deserve all the happiness possible.
-Shannon in Austin

Anonymous said...

Wowzers!! So excited for you all. So many fabulous things going on for you guys right now. I'm so happy that Kaitlyn is eating - and your little peanut is doing so great.

Good luck with the AFP results - I was plagued with a false positive for Downs (1 in 100) and refused the amnio - The level III ultrasound at 17 weeks showed that everything was great. I hope that you don't even have to worry about it and that all will be negative.

Proud preemie mom said...

Liz - finally got to catch up on your blog. Love Kaitlyn' new pink glasses! The baby looks amazing, didn't realize how early they could do a 4D! Simply beautiful. Wishes for a continued healthy, LONG pregnancy from me and Luke!

Liz M

Alisa said...

Miss Ava from Ohio wanted to say Hi to Kaitlyn and let you know that both her and her twin bro, Andersen are always cheering her on. It's so nice to read that you are moving forward in the eating department. Maybe this is the real deal and it can only get better from here on out! Lots of good wishes for your pregnancy!

chioma said...

thanks for your kind words..The twins weight just over 2 pounds so we are believing God for the best.
I am so happy to see the progress your precious kaitlyn is making,,wow! also happy to see your expecting another baby..Well take care and thanks for setting up this support group I am sure u never thought it would encourage a family ..Nigeria, Africa!God bless