Tuesday, March 31, 2009

Amazing resource for moms of Angel Babies

Hi Everyone,

Someone just told me about this great, wonderful much needed blog.

It's an amazing community for those who have lost children!

Thank you gal for letting me know about it (she is a contributor on the site). I just met Gal through my work as the March of Dimes Ambassador and Family Teams Chair.

Monday, March 30, 2009

A great autisim blog post

I'm always coming across great finds/reads on the internet, just thought I'd share this great post:

A mom's blog about a trip to the grocery store with her autistic kid...very familiar!

Read Blog:

Really makes you think before you judge...

OH ps, Kaitlyn is sick AGAIN, I've been to the docs office 1 time a week for about 4 weeks now. K has a raging ear infection and more cough/ crud, this time her oxygen levels were 91 (should be 99-100). I knew something was up today....

Sunday, March 22, 2009

sick = 1 pound down the drain

Kaitlyn got sick last Friday, ended up being very sick come Saturday and Sunday, and as of Tuesday, we almost had a trip to the ER when Kaitlyn had 1.5 hour coughing spell. i was so worried, she just couldn't stop coughing.

Thankfully Brian was home and listened to her lungs and felt she was moving air and I called the 24 hour nurse line, when I finally go the nurse on the phone her spell had subsided (I had tried everything with no luck, abuteral breathing treatment, steam in the bathroom, water, muccinex). I think eventually it was her licking a cough drop and the muccinex that worked. Oh her poor little body racked with the coughing spells. It's just heart breaking.

Doctor visit the next day felt that thankfully it wasn't in her lungs (or ears) and no antibiotics this time around (in the scheme of things, compared to many of my micro friends, I'm truly lucky in this regard. Kaitlyn's never been re-hospitalized for an illness, a real rarity with her lungs being so immature when she was born and having spent 6 weeks on a ventilator)

But, then again, will she ever be able to withstand getting sick without round the clock breathing treatments? My not sleeping, listening to every cough, every breath, making sure she's ok and worrying that she's going end up in the hospital this time? Do all kids colds turn into horrible coughing fits? She immediately stops eating of course, and we lost a pound in about 4 days.

I had been so happy that she as finally over 27 pounds, she had even gotten up to 27.6 pounds, the last weight check was 26.4.


That pound took almost 1 year to gain. 1 year. Down the drain.


Of course after she lost that weight and she started to improve from her bug I started "pushing" the food on her again.

the more I pushed, the more she refused.


At the same time, we've been having battles over pooping. Kaitlyn just hasn't gotten the whole poop in the potty thing. And the more we ask her to sit on the potty (when it's CLEAR she needs to poop, crossed feet, she bends down, and we smell tell-tale-signs, well after about 5 or 6 times of having her sit, her not wanting too, asking me "what's in my underwear, mommy?" gets up again, then eventually she goes in her underwear. Typically about 1 minute after she was last on the potty. SOOOO frustrating.

So on both accounts, (pooping and eating)we are on a "New Plan"

Our New Plan is giving Kaitlyn total control of her eating and potty.

We are back in pull-ups. I've told her: when you are able to poop in the potty you can start wearing your big girl undies again. When you need to go to the potty, you need to tell mommy and then I'll help you. She gets close to asking, I say to her, is there something you need to ask me? "use potty Mommy" (this is while she's giving me the very clear physical signs, crossing the legs, etc), but we've had no poop in 2 days, I think she's very stressed out over the whole thing.


Eating. Well, usually she eats a bit on her own. a bit. We then spoon feed her as much as we can get in. And try to get her to drink milk. As I said, the more I've pushed the more the battles ensured. I tried just one ounce of milk the other day (with carnation instant breakfast in it) and she refused it. I told her she just had to finish that milk, she said "mommy feed you" (she still mixes up her pronouns) I know she has the ability to drink her own milk, feed herself, this was becoming a clear battle of wills.

it was sooo frustrating, I was home alone, Quinn was his typical screaming in the background, I lost it. I was so mad at myself for getting into the "battle of wills" with Kaitlyn. She's 3.5. How can she practically reduce me to tears? I feel so horrible as a mother, I can't get my child to eat? At times like this I wish in a way I still her her gtube. Then at least I could feel a bit better about getting nutrition in her, but then again, if I had it still, I actually don't think I'd use it, as how will she ever get the understanding of how it feels to be hungry?

So the "New Plan" is to let her completely (100%) determine how much she eats.

Well so far, this new plan is horrible (on me at least) and she has hardly eating anything at all. I 2nd guess myself all the time.


I can't tell you how hard it is to have her sit down and then say she's done without touching a bite. Other times, she's asked me to feed her, I've said no you are a big girl now and you get to feed yourself. I'm really hoping that she'll start feeling hungry and actually eat more than a piece of toast and a few sips of milk.

Please give me the strength to trust that her little body will tell her that she needs the nutrition.

I was so happy that she had finally gained that pound. I could tell she weighed more. Now every rib is sticking out, her little legs are so tiny.

She's 3.5 years old and weighs 26.5 pounds. And for each of the last 2 days she drank about 4 ounces of milk, some juice ate a piece of toast (with as much butter on it that I cut put on it) and maybe some crackers. Not a lot of calories.


Oh... the life of feeding a micro preemie. What they never tell you in the NICU. If you are reading my blog and have a child who eats, be thankful, I know it's a small thing, you never really think about the fact that your child just sits down and eats. But I'm telling you, appreciate the small things, as if you have a child who doesn't eat, know that we jealously watch the simple things and wish it could be that easy for us.

Edited to add:

Funny enough, I just read my good friend Billie's blog and she just blogged on the exact same subject: here's her post called: Feeding MicroPremies

Sunday, March 08, 2009

Maybe, just maybe I have a happy baby??

Quick recap (I always try to make it quick but there seems to be too much to update on:)

1. We found blood in Quinn's stool last weekend. This meant that most likely Quinn has an allergy, most likely Milk Protein Allergy. I had given him about 6 ounces of my breast milk (milk that was frozen last, and was primarily dairy free from my diet), as I felt he was getting sick (coughing, cranky) and lo and behold screaming Quinn came back again. He became inconsolable. I guess I just couldn't admit to myself that my 2,500 ounces of breast milk were pumped for nothing (yes, please don't suggest that I donate it, as of course I will) but you can't even understand the pain that I went through as my breasts don't take very kindly to the breast pump. I made this sacrifice to give my son the best he can get, and now I have to admit that he's allergic to my milk due to my ingestion of milk.

2. I once again implored to my doctors that I wanted to see another GI specialist as this was becoming ridiculous. Our Gi had only asked for 1 stool test, even though I kept insisting that the reflux meds weren't working, he was still very uncomfortable. I think my biggest frustration was that I was once again (as I had to do with Kaitlyn) try to figure out what was wrong with my child. Aren't doctors supposed to do that???

I had a crying unhappy baby that was still eating every hour (at 7 months old) at night, was no where near sleeping through the night, he was refusing solids (which was freaking me out due to my experience with Kaitlyn and I was just trying to not let it freak me out) I just couldn't take it any more. he was clearly not happy, although he was better on the Nutramagen, he wasn't the "new" baby that so many of you spoke about once going on Nutramagen.

3. So it was time to put Quinn on an elemental formula after 2 positive blood in the stool tests. I really didn't want to go this route, but of course I've known we've eliminated all other options. I also made the decision to try to wean him from his hourly eating all night long and do some sleep training, and try to get him more on a schedule. That's been tough to do as he never ate more than about 4 -5 ounces at a time.

Well fast forward after a horrific week, I mean really horrific. He cried so much he became horse. Here I had a daughter who is terrified of loud noises (so she cried all the time too) and a son who screamed for hours at a time for about 4 days straight. Oh my. What a fun week I had.

BUT, I think I can now say, that Quinn must have a Milk Protein allergy, because, knock-on-wood he's doing so much better. I think that I might even have the "new" baby that other moms spoke about after getting their babies onto new formulas.

I'm a bit hesitant to actually say so, as I don't honestly believe he could actually be so much better, (give me another week to see if it's still the case, then I'll be a believer), but really, he's finally this happy little guy that came out on occasion before. It's really amazing. Really.

Quinn is now on Nutramagen AA (Amino Acid) which is an elemental formula, dairy free. After the weaning few days, he's now taking 6 ounces at a time (not every time, but at least 2 feeds a day he's taking in 6 at one sitting). He's spitting up more, but it seems to be a happy spit-up, there's no fuss with it at all. (Guess I'll have to still try to figure that one out). (anyone have any ideas on the increased spitting up, I'm open to suggestions!)

Wonder if he never had reflux at all? Of course want to wean him off prevacid then zantac to see if that's the case, but I'll hold off a bit before doing that.

He's now sleeping longer, I'm only having to feed him 2x at night, and I'm in the process of eliminating 1/2 an ounce /day at each of those two feeds. He's not in our bedroom any more, so last night was the first night that Brian slept in our bed together in I don't know how many months.

Maybe babies aren't that bad after all. I really could never figure out why some moms loved the baby stage so much. I have to honestly say (again I feel like a horrible mother here) but I've not had a very easy run with the baby stage. Kaitlyn was obviously not easy (that's an understatement) and Quinn has been really difficult too. I kept saying to myself that I couldn't complain, as he ate (somewhat) and he didn't vomit all the time, but I have to say, he cried, a LOT which was actually even more than Kaitlyn ever cried.

Wednesday, March 04, 2009

Help us Save Babies!

Hello to all of you Friends, Family, Mothers or Children of Mothers!

Kaitlyn was choosen to be the March of Dimes Ambassador Family for the San Francisco Bay Area!

Many of you know a bit about my story, but here is the way you can help support in the name of Prevention of and research into saving Premature Babies. I thought I'd tell you again briefly about my story and about what the March of Dimes does. Before I had preemies, I had heard of March of Dimes, but never gave much thought about the organization.

I have created a photo story to chronicle my story: you can watch it here:

March of Dimes San Francisco Ambassador Family 2009 from lizmccarthy on Vimeo.

My story:

I went through years of Infertility issues and finally became pregnant with triplets from IVF. I lost my triplet when I was 10 weeks pregnant. As I'm an "older" mom, I was told to get an amnio. Unfortunately, (due to the way the doctor did my twin amnio) my water broke on one of my girls from the amnio at almost 17 weeks from an amnio on my twin pregnancy. I was told to abort the pregnancy, as I would deliver in 24 hours and SHOULD I last longer, there was no way that I was going to have "healthy" babies. I defied all odds and lasted 10 weeks on bedrest. As the doctors predicated, I did get an infection (and almost died) and went into preterm labor at 23 weeks, my labor was delayed until I delivered very prematurely at a bit over 26 weeks. My first born daughter, Corinne, passed away in my arms a few hours after she was born due to her poor lung development from no amniotic fluid for 10 long weeks. My surviving twin daughter, Kaitlyn, spent 4 longs months in the NICU. Both my daughters weighed 1lb 10 ounces. My daughter Kaitlyn was very very ill during her 4 months in the Neonatal ICU. She had a heart surgery when she was 4 days old, which cased her vocal chord to become paralyzed, had eye laser surgery to stop the Prematurity related blindness disease (ROP) (it's why Stevie Wonder is blind), has a feeding tube, had countless infections, blood transfusions, and we almost lost her many times.

She is now almost 3.5 years old and is doing quite well for how sick she was. We took out her feeding tube just a few months ago. She wears glasses. She speaks very quietly. She is attending a Special Education Preschool 5 days a week. Her first year of life we had well over 280 doctor/therapy appointments. Can you imagine? But she is my joyous miracle and she has her special guardian angel twin-sister looking over her every day.

We've also added another preemie to our family: Quinn Edwdard McCarthy was born 6 weeks premature on July 21, 2008.

I've since started a lot of support groups: I run a Micro Preemie on-line support group (for babies born under 2 pounds) that has over 450 members globally. I run a local Preemie support group in the bay area. I help with a Feeding Tube support group. I've been told I've touched a lot of lives. I want to give back to this incredible community of children and parents whose lives have been changed forever by their early arrival into this world. And I really want to publish my story and get the word out! Preemie life doesn't end when you leave the NICU. It's a hard road to be on.

And we are excited to announce that Kaitlyn was choosen to the be the 2009 March Of Dimes Ambassador for the Bay Area!

I've chronicled my story since my water broke: here's a link to my story if you'd like to read more:

Why am I telling you all of this and about the March of Dimes?
Well, the March of Dimes does a lot of research into the causes and recovery of Premature babies. My daughters were both given Surfactant to help their lungs. (remember they were born each weighing 1.5 pounds) It's what saved Kaitlyn. Did you know the March of Dimes was responsible for this life-saving treatment of preemies? My daughter wouldn't be here today with us if it weren't for the March of Dimes. Maybe their research in the future will be able to help babies like Corinne. Did you know that the March of Dimes was also responsible for the life-saving research and funding to find the cure for Polio?

Every year the March of Dimes has a walk in honor of Premature Babies. It's called March for Babies.

People have been walking in support of The March of Dimes for a long time, (hence the name, March for Dimes.) Initially the walk was about raising dimes in support! Last year I was chosen to stand on stage at the San Francisco walk and speak about my story. I cried on stage. Kaitlyn joined me not long after she learned to walk. It was very emotional for me (and for the audience I was told). I feel very strongly about supporting the March of Dimes in their prevention and research in support of the March of Dimes.


If you click on the link below you can do a number of things:
1. Walk with us and help raise money on your own in support of the March of Dimes in names of my twin daughters. There is a "register to walk" button at the bottom of the page. I can get donation envelopes and posters for you to take to your offices/families/friends. Just let me know what you need! Please walk with us and help raise money!

2. Donate to the March of Dimes in the name of my daughters without walking. You can donate directly on-line (link below), or you can send a check to me, whichever is easier for you.

3. Just walk with our team without donating. (again, click on the register to walk button)

The details of the walk:

It's a 10K (that's about 6 miles, but there is a short version too if that's too far)
4/25/2009 9:00 AM - Fort Mason, San FranciscoBay & Laguna StreetsSan Francisco, CA
I know this current economic environment is very tough. On all of us. Even if you can just donate $5.00, it will help!

This year I've set a goal to raise $2,200! If you register to walk with us and help raise funds at your office, this will be an easy goal to make!!
Thank you in advance!!!!

Liz McCarthy
Mom to 26w micro-preemie twins: (Oct 05): Kaitlyn (1lb 10 oz) and Angel ^Corinne^ (1lb 11 oz)
and 34w (July 08): Quinn
Read their story:

Sunday, March 01, 2009

Alternative Therapy Post

Alternative Therapy, I keep promising, but not writing about it, so here it is in brief form. I was investigating a therapy called: The Anat Banal Method (which is based here in San Rafael, California). I've heard people come from all over the world to see Anat. However after talking to some local moms decided to go with a different type of Therapy called: Svetlana Masgutova Method.

My local San Francisco Bay Area practicioner, Boutaina Rosen is amazing:

What is it? The Masgutova Neuro-sensory-motor Reflex Integration - MNRI ™ Method is a set of programs focused on the restoration and maturation of primary movements, reflexes, coordination systems, and skills for optimal performance of natural mechanisms, developmental processes, brain functioning, and sensory-motor integration.

And here is a bit more info:

Brain injury, birth trauma, abuse and neglect, chemical imbalances, allergies, sensory processing issues, autism, behavior disorders, cerebral palsy, Down's Syndrome, ADD, ADHD, Aspergers, learning disabilities, metabolic disorders, genetic disorders.

This group is for parents of children with challenges and the professionals working with them who are using the Masgutova Method. Adults with challenges are also welcome.

The Masgutova Method utilizes natural, non-invasive exercises to facilitate the rehabilitation of a variety of challenges using the body's own developmental resources. These effective and efficient methods require less resources than many other rehabilitative programs and are respective of each child's differences and personality. This method for addressing physical, psychological, intellectual, and emotional differences was founded by Dr. Svetlana Masgutova of the International Dr. Svetlana Masgutova Institute based in Poland.

We are seeing a local practitioner in this method. Boutaina Rosen. Here is her website: She is really wonderful. Kaitlyn has now been about 8 or 9 times. I have to say after the first 2 visits, I noticed a huge increase in her speech. Now I cant' honestly say if it was from doing this method or if it would have happened on it's own. That's always the hard part about alternative therapies. You want so much for your children, you will give everything you can and go into debt to try to give them as much as you possibly can to help them. We, (parents of special needs kids) can easily be taken advantage of.

I've also noticed that Kaitlyn really calms in Boutainas presence. It's very hard for Kaitlyn to be mellow and relax and "Bou" as Kaitlyn calls her loves Bou's massages.

Kaitlyn's special education class noticed a change too. She had 1 week of her new school before the Christmas holiday (and about 6 sessions) and upon returning to school her teacher felt that Kaitlyn's speech and interaction with others had really improved.

Who knows. I wish I could attribute all these changes to this new therapy. It might be working.

I've also been trying to give Kaitlyn supplements based on this: I purchased the audio CD called "The Biology Of Behavior" I do highly recommend getting this CD. Really good stuff. I've always given Kaitlyn probiotics, but I increased her dose of probiotics, added calcium/magnesium and Omega 3 (instead of just Flax seed).

So which is it? the new therapy? The new vitamins/supplements? Her new special school. Just normal development? Who knows. I can't say, BUT I can say that I do think Kaitlyn has really improved in terms of her language and interaction. She still really doesn't like to make eye contact much or to be hugged. She still loves to roll around on stuff, BUT I do think she's doing really well.