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.

Sigh.

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

Sigh..

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.

Sigh...

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.

sigh.

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.

sigh.

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.

Sigh.

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

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.

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: http://www.micropreemies.com/

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.

HOW CAN YOU HELP?

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)
http://www.MarchForBabies.org/KCMccarthy

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: http://www.micropreemies.com/
Liz@aLizard.com

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: www.BodyAcumen.com 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: www.DianeCroft.com 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.

We have pee in the potty!

So sorry about my delay in posting and I have so much to post about, but so little free time...

Hopefully this will remain short (as I just sat down to blog and it's 10:45pm and I'm TIRED and should really be going to bed).

A week ago Sunday (on a pouring rainy day Sunday) I decided it was time to ditch the diapers! The first day was HORRIBLE. Kaitlyn and I spent almost the whole day in the bathroom with mom cleaning up a lot of pee from the floor and none in the potty. It was very frustrating and I was ready to throw in the towel (or a lot of towels that I ended up washing)...BUT I hung in there and amazingly, starting with the first pee in the morning, Kaitlyn got the pee thing down very quickly. After the first time (with a movie on) and the 2nd pee that she realized what was happening, the light bulb went on and she's been doing great (as far as pee is concerned).

Now the poo thing, that's another story. Lot's of poo in the big girl undies (not much fun for mom). AND tonight, she pooed in the bathtub! Ugh, was that a surprise, she's only done that time in the past! Especially as I was in a rush, trying to get on a March of Dimes Conference call right after I put the kids down.

Oh well, all-in-all, I have to say I'm happy I finally did the deed and got rid of the diapers! We use pull-ups at night and for naps and she's even mainly keeping those fairly dry too!

Weight:

Kaitlyn didn't poo one day and I was afraid that she might be holding back a bit, so I weighed her and was shocked to see the scale FINALLY FINALLY go over 26 pounds (remember, she's been wavering in the 26 pound mark since MAY of last year). It was 27.4 pounds! I thought that maybe she was a bit backed up and didn't really count that weight, but I've since weighed her 2 other times and each time she's been over 27! Yippee! It took a long time but Kaitlyn has finally gained a pound and without a feeding tube!

The Mountains and what we love!

Let's see what else. Brian's parents came to town all last week (I don't think I got a single picture with them), hopefully they'll send me a few that I can share. Mame and Gille (their names from Grandma/Grandpa) loved seeing Kaitlyn and Quinn and agreed that Q can be quite a difficult little guy at times. He's still giving us a run for our money as far as the reflux goes.

While they were here, we decided to take a first family trip to Tahoe. I say first, as Kaitlyn has only been to Tahoe once since she was born, and she vomited so much in the altitude that we almost had to go to the ER. That was almost 2 years ago for 4th of July. Brian and I haven't gone together since then, and we haven't skied much either. I skied 2 days in 2007 and Brian skied 1 day in 2008. Remember that we MET skiing. Brian used to be a ski patroller and skied over 100 days a year. We love skiing, we love the mountains, and it's been really hard for us to not share something that we love so much.

So, while Brian's parents where here we all went to Tahoe together. I was pracitcally tearing up as we hit the mountains and the snow, thinking of how amazing it was to be bringing Kaitlyn to Tahoe without feeding tubes, blenders, syringes vomit cups, etc. etc. We didn't bring any special food what-so-ever. She now eats like a regular toddler!

It's hard to explain exactly how incredibly cool this was. I'm hoping I can get it across, but the difference in Kaitlyn now from just a year ago is absolutely amazing. And how much easier it is on her parents. Wow.

I was so excited to show Kaitlyn the snow for the first time. And as I thought, she loved it. She wanted to spend all day outside. Mame and Kaitlyn built her first snowman. She loved to roll in it (sensory stuff) and had a blast!

Brian and I skied 2 days while Mame and Gille watched the kids. Although the weather wasn't all that great (a very very wet snow storm/almost rain) we had so much fun. The 2nd day ended up sunny (still chilly), but we had a blast! It was so fun for us to spend time together and doing the thing that we both love so much!

Hmm what else:

March of Dimes - I'm just starting to gear up for the March of Dimes season. 2 weeks ago I was asked to attend the March of Dimes Kick-off breakfast as we are the Bay Area Ambassador Family. It was very early in the morning, so we were able to stay in a hotel the night before (Kaitlyn's first hotel stay). I was introduced by a local celebrity from the news (formerly on Good Morning America), Spencer Christian, who I've always really liked (and Oprah even personally knows). ( Then after telling my story (with dry eyes amazingly), Kaitlyn came up on stage and said: "Thank you March of Dimes!" It was very cute. They had a lot of pictures up of Kaitlyn and even Corinne.

They showed a video of the National Ambassador family and I was actually really happy to see that they choose a family that is left with long-term affects from prematurity. On-line friends of mine www.PreemieExperiement.com have expressed a lot of concern in the past about March of Dimes limited telling about long-term consequences of prematurity, and I feel that they (MofD) is really trying to change that, which makes me very supportive of the organization.

Very soon I will get around to sending out an email about my Family Teams Walk this year and if you are local I'd love to have you join us! The walk is on April 25th. I've been wanting to make a cool slide-show of the girls early times, but just haven't gotten around to it yet. Hopefully soon!

Kaitlyn got her 3rd haircut a few weeks ago.

My smiley little man (when he's not crying from reflux)

I'm 7 months old! I just learned to roll-over (from tummy to back) but can't sit up yet on my own

Kaitlyn's celebratory pee-on-the-potty cupcake in "Bluke" her favorite color) Yes, she says Bluke.

Valentines Day with J

Spencer Christian, J and Kaitlyn at the March of Dimes kick-off Breakfast

J, Liz and Kaitlyn

The McCarthy's all trying to compute in the cabin (funny, as my husband is NOT a computer guy, but just found Face Book!, there was no internet connection, so not really sure what they are all doing!)

Kaitlyn took some convincing to get on the sled, but eventually loved it

Mom/Quinn and Kaitlyn playing in the snow

Dad and Kaitlyn in the snow

Kaitlyn really took a lot of convincing to get in the sled

Mom and Quinn first day at the cabin (a fellow-fire fighters cabin that we rented)

The McCarthy family all in the snow - FINALLY!

playing in the snow

Liz and Brian finally skiing TOGETHER for the first time since before I was pregnant with the twins in 2005!

8 Twins born in San Francisco

I wish it weren't the case, but hearing about newborn close-to-term twins continues to take my breath away. Whenever a movie star has twins, I have problems. Whenever anyone has twins, I feel pain. A twinge of jealousy. yes. I'm sorry but it's the truth. I feel sadness, wishing it was my good news.

Maybe I'm a horrible person. I of course am very happy for the parents, I always am eternally grateful that they didn't have to experience what I did. But it's still really hard for me. I hope it won't always be this way. Older twins don't bring on the same reaction. It's just newborn twins.

I guess because I never got that joy. I knew the excitement of being pregnant with twins, anticipating it all. Announcing to all our families and loved-ones that were were having twins. But our good news stopped after I had my amnio.

This news story really affected me tonight:

8 Newborn sets of twins born to 8 couples within 4 days at the hospital where I delivered my twins in San Francisco. The news story goes on to say that all are healthy (meaning born close to term to not be in the NICU, my NICU), and that the SF Bay Area is known for advanced maternal age (35) where the rest of the country the maternal age is in the 20's (I knew that).

As I watched the story my heart thumped out of my chest, I gulped and felt a sob escape me. Will this feeling ever go away?

Here's the link to the video segment from our local news: 8 twins born in 4 days in San Francisco

Congratulations to all of you!

Update:

Valentines Day, Katilyn wanted to see some pictures on my computer. Kaitlyn's been asking about my csection scar and I've told her that's where Quinn came out as well as Kaitlyn and her sister Corinne. Today she wanted to see some pictures and were looking at their birth pictures just felt I had to post these 2:

Happy Valentines Day Corinne, we miss you

And world, here are MY twins together for the last time.

I'm angry and upset - Octuplets

I don't normally get into "political" or controversial (especially the most taboo subject selective reduction in multiple birth pregnancies) , but I have to tell you I'm really, really angry about the news of Octuplets being born, especially with the circumstances surrounding their mother.

I was upset when I first heard about the Octuplets being born. I guess I'll let it out there. I know all the religious followers I have I will upset, but I think it's horribly wrong to let a mother carry that many fetuses. Wrong. It's not god's will, it's science that is getting women pregnant in the first place. She's doesn't even have a job!

The cost to society for the care for 8 babies. Who knows what type of conditions they will be in long-term.

And when I found out she already has 6 children, is unemployed and was quoted as saying she was lonely and wanted more children.

grrr

She received $165,000 for medical disability as she hurt her back working in a mental hospital (in a riot).

She's unemployed - how in the world is she going to PAY to take care of and feed 14 children. She doesn't have an income? How long can $165K last after multiple in-vitros(at $20K a pop). How much is our society going to pay for all of those kids. Will my hard-earned Federal and California tax dollars be paying to help her and her desires to be a mom to 14 (even if she ONLY wanted 7, that's still ridiculous!)

Here she is quoted as saying: “I know I'll be able to afford them when I'm done with my schooling,” the 33-year-old single mom replied. Calm, poised and articulate in the glare of the media spotlight, Suleman added: “If I was just sitting down watching TV and not being as determined as I am to succeed and provide a better future for my children, I believe that would be considered, to a certain degree, selfish.”

What world do you live in? Yes, it's considered selfish. My husband is a full-time fireman (with amazing health insurance benefits for our family), my income is come and go, and we are STRUGGLING to afford our 2 children, let alone start saving for their college education.

She also said: "Curry reported that although Suleman has received disability payments from the state of California, she said she refuses to accept welfare payments. Suleman and her children live with her mother, Angela Suleman."

her mother said she wanted one more girl (well WHY in the world would you implant 6 embryos?) Here are the IVF recommendations:

No more than one or two embryos implanted for a generally healthy woman under 35 "in the absence of extraordinary circumstances." For women over 40, no more than three to five, depending on the embryos' maturity.

Here are some news links:

FAQ: How ended up having 8 children

I liked this honest reporting: news story:

quote: "In a separate segment, NBC’s chief medical editor, Dr. Nancy Snyderman, said the gamble didn’t end with the live births of all eight babies.

“That risk is not only to mom — her uterus can rupture and she can die — there’s a phenomenal risk to eight babies. Eight babies, by definition, cannot be born normal weight and robust,” Snyderman told TODAY’s Matt Lauer after watching Suleman’s interview with Curry.She explained: “They’re going to watch these kids very carefully for eating problems, growing [problems], and then seizures, jaundice, heart problems, lung problems, blindness, developmental delays — there’s a laundry list of things. Long term, because some of these children will be physically or mentally challenged, there’s a looming price tag out here. The hospital bill alone will run $1.5 to $3 million. Forget about getting to college; just to get through special-needs stuff — it’s going to have to come from somewhere, either the taxpayers of California or her family or her church or the hospital. But she can’t do it alone.”"

Each preemie can cost $1M in hospital bills. She doesn't have insurance. She should have considered this when she decided to keep all 6 fetuses. This makes me so, very, very angry. (right to life folks, sorry) this just isn't right.

Hospital bills aside, what are these children going to cost society ongoing? I know what my daughter is likely costing (special schools, Early Intervention, Therapies and of course her medical (luckily covered by our insurance).

The story continued on saying:

"NBC contributor and psychiatrist Dr. Gail Saltz added that there will be emotional issues to deal with as well. “Undoubtedly these eight children are going to have issues: at the minimum, the issue of neglect,” Saltz told Lauer.“Obviously, she’s saying she’s going to love them, but there are 14 children and [only] one of her,” Saltz continued. “There’s going to be an absence of some emotional needs. There will probably be developmental delays at best in these children; maybe learning disabilities. There are going to be major issues that they’re going to need various therapies for.”"

and the mom said as to why she wanted so many children:

"“That was always a dream of mine, to have a large family, a huge family, and I just longed for certain connections and attachments with another person that I really lacked, I believe, growing up,” she replied. "

So this gives you the right to have 7 (6 + the one more "girl" she wanted) Now she has 14 ??

More from the news story:

"Saltz later opined to Lauer that Suleman’s statement reveals emotional issues. “I think she’s in a bit of denial here and quite defensive, because in fact she does talk about the fact that this has been her life’s mission: to have babies, have babies, have babies. There’s an obsession to this, and I think it’s quite disturbing,” the psychiatrist said.
“When you don’t have a connection in childhood, you go see a therapist,” she added. “You don’t have 14 babies.”"

More news stories on subject:

Grandma says mom is obsessed with babies
Medical board probes birth
Celebration to boos in media
Mom gets media /book offers
How are the babies doing?

Feel free to comment, BUT please leave your religious comments out. I really don't want to start a right-to-life debate here.

update: 2/13:

Here's a new story:

Grandma is speaking out!

Quinn and reflux/allergy?

Here's where we are with Quinn,

We did a few day mixture of BM and Nutramigen. Yesterday (first day on 100% Nutramigen) we've seen a drastic decrease in the amount of spit-up (hardly any in fact), he's still burping a lot, seems less fussy but still has red cheeks.

Thank you for the tip on finding generic Nutramigenat Target, but of course my Target didn't carry it. time to shop on-line.

Before I buy a lot I really want to see what happens to his red cheeks.

Last night (after going to bed) he slept from 7pm to midnight (5 HOURS!). the night before he slept 4 hours. Then of course after that he's still up every 2 hours. SO between midnight and 6 or 7am (waking) he drinks another 6 ounces (but every 2 hours). Time to sleep train him? He still needs those 6 ounces. Although he's up to a tad over4 ounces intake at one sitting, he's supposed to be taking up to 6 or 7 by this age (6months) right?

Hopefully he'll continue to take more and more if he indeed does feel better.

It does seem like he's crying less at this point...

Hard to think about my probably 2,500 ounces of breast milk in the freezer......

Thanks everyone for the tips.

Update:

Quinn has been crying since 5pm, I'm about to loose it. I can't take 2 hours of straight crying any more. (yes, it's going on in the back-ground right now, I'm trying to not listen to it - impossible). Nothing I do satisfies him, he snacks, he pushes the nipple away, I try again, he pushes it away, I put him down, he cries. I give him his pacy, he pushes it out, I try to burp him, I can't get anything, I changed his diaper (he giggled during that at least), then back to the crying. uggghhh. 2 hours!

also, i didn't mention donating my milk, as I figured it was understood that's what I would do as I was the recipient of donated milk for Kaitlyn. I wouldn't consider dumping it. BUT it was a LOT of time and pain attached to the pump and it's very hard to think of my doing it for naught (yes it would be for another mom) but I could have cut way back on my number of pumps a day and had plenty still. I have over 2,500 ounces!! I would likely donate it to a mom I just met in my local group who is having a similar story to mine (tube fed baby not tolerating formula well at all) or though the yahoo group for donating milk. I know that there are for profit milk banks and not-for profit milk-banks, and I won't donate it to a for-profit bank.. Sorry, won't do it. I refuse to let my milk be sold.

He's screaming right now. can't take it any more. I feel like such a horrible mother that I can't get him to stop but at the same time I can't stand the screaming. can't stand it! No attachment parenting for me. here I go back to try again.

Suggestion for Title for my blog

Hi wonderful blog readers,
I'm trying to come up with a catchy name for my blog and would LOVE suggestions...

It started out as McCarthy Pregnancy blog, then was McCarthy Preemie Blog, neither are very catching...

I could just name it: MicroPreemies.com

But if I plan on continunig blogging, I'm guessing I'll be writing a lot about just being a mom?

Thanks in advance!!!

Liz

Calgon, Take Me Away!!

Brian worked the last 3 days in a row, so with sick whiny kids, doing breathing treatments, cleaning up runny poops, both crying at the same time, I said to myself last night: "Calgon, take me away". I at least said it with a laugh, thinking about moms in general, and how darn amazing we are...

Way too much going on (I guess that's the usual for me)...

So here is a recap

I went to Monterey last weekend for a Women Council of Realtors Conference, the weather was incredible and I got to spend 3 whole nights in a hotel room sleeping all night long!! I went jogging 2 times in a tshirt (it was 75+ outside), got a pedicure and even got a massage. It was the first Liz time I've spent in oh, well since I was pregnant maybe...

I came back very relaxed, but with a lot on my plate, yes, I know I either can't say no, or I'm crazy, or something else I don't know, but here's what's on my plate:

1. I'm the President Elect for my chapter of Women Council of Realtors (WCR) wcrmarin.org
2. I do our chapters website
3. I'm the State of California Web Committee Chair for WCR and am taking on trying to do a redesign on the current outdated website: wcrca.org
4. I am the founder and co-moderator for MicroPreemies.com a support group for over 400 moms/parents of Micro Preemies.(global)
5. I am a very active member (my sanity savior) of a San Francisco Tube/feeding disorder support group, and now that many of our kiddos are eating, we still get together, to share ideas, help new moms and go out for dinner and drink wine after our "meeting." 2 of our moms our doctors, and these moms have become some of my closest friends.
6. I started a neighborhood moms group, MarinwoodMoms.com
7. I am the web master for the Ross Valley Mothers Club online membership data system
8. I belong to: Marin Multiples Club, San Francisco Multiples Club, Ross Valley Mothers Club, San Rafael Mothers Club
9. I am the founder and moderator of the BayAreaPreemie Support Group
10. I am the founder and moderator of a Feeding Therapy Support Group (national)

Oh, and did I mention that the Bay Area March of Dimes just asked me to:
11. Be the Family Teams Chair for 2009 AND
12 to be the March of Dimes Ambassador Family (ie: poster child) for the Bay Area.
13. Oh, I do work full time, I'm a realtor, but of course the real estate market is needless-to-say, interesting at the moment. (I do have help 4 or 5 days a week, I couldnt do any of the above without my life-savior nanny)

Wow, I'm exhausted just typing all of that.

Now, I know what you are thinking, "Just say No, Liz!"

I know I know!

Well, beyond that here are some family updates:

We are obviously very happy that the Steelers won the Super Bowl tonight. Things were a little touch and go during the game for a while.

When I got home from an open house today, Dad woke kaitlyn up from her nap wearing a jersey and Kaitlyn immediately wanted to "play steelers" also. so dad had her all dressed up in her Steelers cheerleader uniform....so darn cute. She was in her typical fashion and flopping, rolling, literally bouncing off the walls, and hit her head on something, I have no idea on what, but when she came to me crying (which is rare, so I know she's really hurt) and I was comforting her, I discovered blood pouring out of her head and started freaking out. Good thing dad was home and evaluated the situation and felt all was ok (head cuts do bleed a lot).

Yeah Steelers!

Poop

Not sure if I mentioned it, but when I took Quinn (and K) to the GI a few weeks back, I had them test Kaitlyn's poop. I'm concerned that she has really loose stools, which have basically always been like that. Occasionally she'll have a formed one, but rarely. When she's on antibiotics, watch out. runny poop down her legs. Everything in the test came back ok, except that she had very little fat, and we give her a LOT of fat (butter, cream, etc).

Doc wanted me to retest. So I spent the week taking poop samples, taking it to the lab, discovering that they needed frozen poop and more than I provided and wanted samples from more than one poop, so more poop scooping and driving around.

Hmm. what else.

Well, starting last Friday Kaitlyn started coughing. By Sunday night she was sick. Really sick. Oh not again. Cough, snot, breathing treatments around the clock. You know the drill. I'm still always so worried about RSV as well as being re hospitalized due to her lung disease, but at the same point, feel so grateful that she has so far escaped being re hospitalized.

No school for her all week. I kept thinking she'd get over it, but by Thursday she started crying and wanted to be held (which never happens, K is NOT the clingy type). so I immediately called the doctor (they are so great at getting us in immediately) and lo and behold she has yet another ear infection. By this point, she was a round-the-clock whiny mess, poor little gal.

Antibiotics yet again (Oh, I hate all the antibiotics, more extra runny poop)

last night as I went to tuck her in I smelled horrible poop smells coming from down the hall, and sure enough she had loose/diarrhea pooped in her sleep. Poor Baby.

Sunday night I too started getting sick last week and by Wednesday I felt horrible! I lost my voice all week, but am on the mend now.

Quinn might have the crud a little bit, but he's doing decently well.

BUT, as far as Quinn goes, as I dropped down to 1 breast milk pump a day, we are now giving him frozen milk almost exclusively, and I feel that his reflux symptoms got worse (not as bad as before, but definitely worsened) and his cheeks are red. I believe that this can confirm that he has a milk protein issue. As for the last almost 2 months I was on almost completely dairy free diet and with the new meds, he was doing really well.

My older frozen milk was not while I was on a diary free diet (lots of ice cream!). So I tried him on Good Start (yes a milk formula, but it's somewhat broken down milk) ( mixed it 50/50breast milk) and his cheeks got even redder and he got patches on his head too.

The next day I went cold Turkey and switched him to 100% soy formula, and he was spitting up a lot. I gave up at that point, as I couldn't take the increased reflux screaming (and being up for 2 hours between 12-2 for 3 nights in a row) so went back to frozen breast milk.

I'm now totally regretting almost being done with pumping. I guess I'm now going to see if I can increase my production back up. With the cold I had, and cold medicine I was taking all week, I'm only now producing about 3-4 ounces a day. sigh. I was stopping pumping due to my crazy life schedule (see above).



Last bit of really sad horrible news....

My Uncle Bill (my father's sister's husband) has just been given a few weeks to live. He's the most wonderful, amazing man, and this has been a shock for the whole family. He was diagnosed with very advanced cancer. Please pray for his days to be as pain free as possible and for my Aunt to be strong, my heart is just aching for her and my cousins.

I'm thankful that Kaitlyn seems to be improving, I'm thankful that Quinn loves to smile and giggle, I'm thankful that we have our health, that the weather is so nice here, loosing a loved one helps put life and priorties into perspective.

Hmm, I think that about brings you up to date!

I do still promise to post on the alternative therapy Kaitlyn is doing. - I hope you can see why I haven't yet!

I'm 6 months old!!!

My Heaven and Earth Twins

Kaitlyn with her twin doll packpack (picture taken over the summer)

Today Kaitlyn was playing with a set of twin dolls that my friend Lisa gave her (mom to 2 sets of twins).

Kaitlyn called the dolls Kaitlyn and Corinne.

It took my breath away.

A few times in the last few months I've mentioned to her that she has a sister. The other day I called her sister Angel Corinne, so she wouldn't get confused about her Grandma Corinne (my mom).

When I asked about her sister today, she remembered and told me that her sister was an angel. Today I told Kaitlyn that her sister was an angel in heaven watching over her. It was so hard not to to tear up as I watched my little girl absorb this information.

Some nights as I tuck my little darling in and I lay my hands on her head while I watch her sleep my heart aches with gratefulness that Kaitlyn is so amazing and so wonderful and so perfect while at the same time feeling the emptiness in my souls over missing Corinne. I guess that ache will always be there. Sometimes subtle, sometimes strong. But it's there.

Here's a poem I recently came across that really touched me:

The Cord

We are connected,
My child and I,
by an invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.

It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.

It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

-Author Unknown

Kaitlyn eating ice cream

Wow, can you believe our little girl didn't eat ANYTHING just months ago? Wow, she's come a long way! (A little hard to tell in the photo above, but she's got a total shiner! Kaitlyn tends to be very clumsy and took a fall on the 2 steps into our house last Friday... poor thing, she's one tough little girl!)


This first video is amazing! She's talking up a storm . We've noticed a VERY big difference in her talking. I started her in another alternative therapy (I'll post more later about it) and I can honestly say I've seen a huge difference in Kaitlyn. Even the teachers at her new special education school noticed a change from her 1 week before the holiday compared to when she went back after the holiday. Her speech and comprehension continues to amaze me. I think she has quite a memory too, she can exactly remember really tough word's pronunciation exactly correct. When did you learn what the word Metamorphosis meant (or how to say it?).

She's one amazing little girl and she makes my heart sing!



And here is more ice cream eating:



And my newest favorite talking video:

Quinn - trying to get a smile on video

Thoughts for the day

Exercise:

Today I went running! Well, I attempted to go running, (I'm still weaning from the pump and wore 2 jog-bras).

I've only tried to run/walk 3 times since fall of 08. That's weird for me! Normally I exercise all the time!

This time it was without a jogging stroller, I was solo! It was so nice to be outside by myself!
My run was more like a run/walk. Man, I'm out of shape!

As I was running, I was thinking of how incredibly nice it was to have a break from taking Kaitlyn to all of her therapies. I don't think it really hit home until I was out on my own that I'm not having to cart her all over town 5 days a week any more!

In that she takes the bus to and from school every day now, it's freed up my time incredibly! Maybe now (in addition to work) I can arrange a little free time each day and start exercising regularly again. Since the twins were born, I really haven't exercised much at all, with Kaitlyn and all of her issues when she first came home, exercise just wasn't an option!

The weather here has been incredible (sorry east coasters, but on Monday it neared 80 degrees!) That's very rare for this time of the year, it was so nice to be outside and be warm!

What to do - The really big question??
(I'm sure I'll receive a rash of comments on this item)

Today in the mail I received our "bill" from UCSF for holding our 3 little embryos. I've been dreading getting the notice that it was time to renew the chryo freezing or to use/discard them.

We are done with having babies. It's not been an easy road to get our little ones. But it's going to be very very hard to let those embies go. We'll likely donate them to research (YES, I'm a big believer in stem cell research), in fact, where our embies are being held (at UCSF) just got a huge grant for doing stem cell research. That's REALLY weird to think about that they'd be researching with our little pre-children.

We've considered donation to another couple too., but I don't think either of us would be ok with that, knowing that there will siblings to K, Q (and Corinne) running around. I don't know. this is such a sensitive topic. Besides the fact that my eggs are "old mama" eggs, not sure if anyone would even want them! I really have to get my head around this one. I know this topic is often HIGHLY debated (due to religious opinions and I'm sure some of my readers will be upset that I'm OK with stem cell research, but that's how I feel).

My husband and I have to discuss in earnest if we would want to donate them. I just got the paperwork yesterday and we only have 30 days to decide!

Quinn Update:

Well, finally, I think the reflux is starting to improve! We've gone a number of days now with a fairly content little guy (until today that is). He cried a LOT today, not sure what was up today. But really, the crying, arching spitting up episodes were better (take today out of the picture) and I'd be really really excited .

After I had started writing the above (the little bugger must have known I was trying to do a blog post, as he started screaming and proceeded to do so for about 1.5 hours straight - at the top of his lungs!)

We have Quinn in a 2x/day dose of prevacid and 2x a day dose of zantac.

We'll see how the next few days go.

Pumping:

It feels really strange to purposefully be letting my supply drop off. When I hear of all the moms out there who only get a tiny bit of milk and here I am trying to make my supply go away, but at the same time, feel sad when every pump now I'm getting less and less (even though I'm doing it on purpose). Hard to explain the mixed emotions I feel over it. Strange. I used to get about 50 ounces/day now I'm down to about 20. Quinn has now started on my frozen stash. He's getting milk from august 3rd (just a few weeks after he was born).

Did I mention that I have 3,000 ounces saved? I approximately calculated and hope that should be enough to get him through close to a year at least. Feeling better that we are getting some results from the meds that I will be able to give him my milk!

Kaitlyn:

Wow, she is making Brian and I smile all the time now! I've just taken some great videos of her talking up a storm! I can't wait to share them. I teared up a bit at dinner tonight watching her talk to Brian and I and both of us were looking at each other (Bri and I) just smiling and giggling at the funny things she was saying. It just made my heart sing. Soo, darn cute!

Also, she got a big girl bed yesterday! (a toddler bed). Her room (which will be Quinn's room too if he EVER starts sleeping) so we needed a small bed to share with the crib. She seems excited and I'm excited that so far she' snot getting out of her bed even to get blankets that she's dropped. This morning (her first full night in the bed) she was just sitting on her bed waiting for me to "get her out of bed". I loved that, and I'm certainly not about to let her know that she can get up on her own! I'm sure she'll figure that out on her own at some point! K is really a great sleeper and is such a good girl. As Quinn has his really seriously horrible moments, it's reinforcing the fact that Kaitlyn is just amazing.

The other day when Brian asked who her best friend was, she said: "mommy!" That warmed my heart! Oh, how I love my little darling daughter.

Oh and eating! wow, I still promise to do a post on the subject, but what I can say is that WOWWWWWW! She's really eating like a regular toddler. It happened so fast. Only just a few months ago we were having a really tough time, and now she likes to eat. She ate a whole 4 ounce ice cream tonight after eating a good dinner and eating it on her own!

I promise to do an eating post soon!

That's the updates from the McCarthys!

Good-bye to the pump

Oh, and I didn't mention that I've decided to wean from the breast pump. Just can't take it any more. Especially with the thought that there's a chance that it's my drinking milk (even the tiny bit I'm eating now, ie: cheese) that could be causing the reflux - oh to think of all the frozen breast milk I have stored that I'd have pumped for naught! Maybe that's why I never went totally dariy-free in my diet, just can't BEAR the thought of all that milk in my freezer!

I was pumping 4x a day and was still ahead of Quinn's intake by about 10 ounces/day. I went down to 3x almost a week ago and then in the last 2 days went to 2x a day. Oh the pain! But as of tonight, we had to defrost some milk! Sorry little man. I did all I could. I pumped for almost 6 months. Just can't do it any more. Especially with Kaitlyn's new early morning school schedule, it's just too much for me to handle. My plan was to make it through the holidays. I did that.

I want to start exercising again. The pain was too much for me to do any exercising. The pump is not nice to a woman's breasts. We are made for breast feeding not breast pumping exclusively!

To think of how many hours a day I've spent at the pump. My husband is tired of hearing me say, oh it's time to pump! I'm tired of saying it. Kaitlyn is tired of saying, "oh mom's pumping!"

So soon, good-by to the pump, forever! This is my last pregnancy related thing. I'm done. which makes me feel old and sad in a way, but I'm not going to miss the breast pump!

quick update

I'm tired, really tired, and want to take the time tonight away from the computer watching mind-numbing tv...

But the good news is that I think our new medicine cocktail is working.

Thank you all for your suggestions, I've tried doing more baby-wearing, but how in the world do you do that while trying to lean over a bathtub or read a toddler a book in your lap? Just doesn't seem to work for me. I wear him while I"m out of the house, walking, at the park, etc.

We got into the GI on Friday. This is our new current dose of reflux meds for Quinn:

2 7.5 mg doses of prevacid solutabs 2x a day. 2 1ml does of zantac 2x/day. We started on Friday night and yesterday evening and today I think he was actually better. Not as much crying...wow, I'm still waiting to see if this is really working.....

Last night the little man fell asleep at 8:15 and slept peacefully until 12:30!!!! Wowzee! that was the longest he's ever slept and he's never fallen asleep that easily. Tonight he fell asleep even earlier (before the bath time ritual with Kaitlyn, so I got to read my little girl 2 long books for a change without having to listen a mind-numbing screaming baby at the same time!)

Forgot to mention that I took Kaitlyn into GI also, as she's had the runniest poop for as long as I can remember. I used to just think it was because she was on a liquid diet. No longer. Poor thing. We give her tons of pro-biotics, but I sometimes think after a dose of probiotics she poops not long afterwards and it's always runny.

Wonder if that's why she's not gaining weight? She's been on so many doses of antibiotics it's frightening. Well, that's another issue to tackle another day. (and to help solve so maybe she can be diaper trained, but if I were her, I wouldn't want to poop in a potty if I had the runs 24/7.)

Reflux Blues

I've mentioned that we believe Quinn has reflux. What I haven't really gone into is saying how hard this is. Maybe this is why some have commented on my general "downer" mood as of late.

I think I've avoided really posting anything about it at all, as I felt I had nothing to complain about. Yes, how in the world could I complain about my 6 week early son, who only spent 3 weeks in the NICU. He smiles at us, he giggles at us. His smile is so amazing, it’s the most heart-warming enduring thing that I could ever imagine. We never got to experience this with Kaitlyn so how can I complain?

I know too much about all the other Micro moms out there that have so many more severe issues that they are dealing with. I also know so many of my friends whose children have long-term disabilities, either from being a micro-preemie or from other birth defects. I've met so many since my life changed.

Oh, and I can’t forget to mention the fact that a crying, fussying, spitting-up, screaming, short cap-nap and constantly eating round-the-clock baby (and gorgeously smiling happy/giggling when he's not doing any of the prior) doesn't leave a lot of free time to blog in the first place.

I feel bad about complaining because he's eating. He's thriving. He's not projectile vomiting. It's only Spit-up...He's amazing. he's wonderful.......But he is completely wearing me out. At times to the end of my limits. But how can I complain? Isn't this just "normal" motherhood? I wanted another child. Isn’t this just what it’s supposed to be like? I don’t know what’s “normal” anymore. I do feel ungrateful and like a horrible mom for complaining (this thought having nothing to do with some of the comments left on my last posts)

How can I complain? So I've been silent on the subject.

But Brian and I are having a tough time. our son has bad reflux and I feel extremely, extremely tired, worn-out exhausted and really frustrated. I have done all the research and our poor little guy isn't getting help.

I’m sorry to complain, but this post is it. It’s going to be a downer. I’m going to complain, I can’t TAKE it any more without letting some steam off. If you don’t want to read a “negative” post, then skip over this post. I don’t want to hear negative comments of how bad a mom I am a this point. Really. I’m NOT in the mood.

He is no where close to sleeping through the night. He goes either 2-3 hours at most. and oftentimes can be refluxing/fussy/eating/colicky/crying/dosing for 2 hours straight.

Here is a 2 hour recap of my last 2 hours tonight (the good news is that this happened during the daytime hours as opposed to the middle of the night when it usually happens):

(not sure of the exact time when this started so the hours are approx, but I do know it lasted 2 hours...)

Kaitlyn missed her nap today she was a bit cranky (and hungry) to top everything off.

6:00pm Quinn woke up screaming (he never naps more than 20 minutes at a time)
Got him some milk as soon as I could. He took about an ounce before pulling off the nipple and fighting me. Got really stiff and arching. Started crying again. Burped him (burping him is NOT easy, it can take a LOT of time), spit up all down my shirt. he settled down, tried to see if he'd eat more, he wouldn't, cried, pacifier (we call it pacy) settled him down, he almost fell back asleep, so I put him in the bassinet, as I was trying to get food ready for K.

5-10 minutes later, as I was trying to feed K, he woke up and started crying urgently again.

He was arching and stiff, clear signs that he has a burp. Worked 5 minutes to get a burp, finally got one, with a lot of spit-up again. After the burp, he ate almost 3 ounces (that’s a LOT for him to eat at one time), his max is usually about 2 ounces at a time. Got another good easy burp out of him. Gave him pacy. he started to sleep again in my arms, but him down. . Had finished feeding K and was going to use this nice time (a rarity for Q to be sleeping) to give K her bath and read her book and have nice quiet mom/daughter time. No go. He slept for 10 min or so and then woke up again.

K had a poop, and was cranky and wanted my attention, Quinn was fussing Tried to give him back pacy, he spit it out, his crying increased. tried to give him back pacy, rock him his crying increased, now it was becoming an urgent cry, Picked him up, tried to burp him, he was now screaming, (K was whining at my legs at the same time of course) tried to burp him, nothing. You never know, as sometimes it can be sooo hard and super long until you get a burp, so you never know really what he wants. (This makes me feel like a horrible mother).

Realized that I hadn't given him his 2nd dose of Prilosec for the day....(story continued below)

(now this is a side-subject because our Pediatrician has only prescribed him 1/2 tablet of Prilosec a day (7.5 mg) with our without food. I had some left over from Kaitlyn and we are almost out. I have a call/email into our GI doc from last TUESDAY as our Pediatrician said she can't dose any more than the 1/2 tablet she already is prescribing.

According to www.marci-kids.com the ½ tablet that we are giving Quinn (without our whitout food) is 1/3 the dose that he should be receiving. Also, it is supposed to be given on an empty stomach. How in the WORLD do you give it on an empty stomach when your baby eats ALL DAY LONG? The site clearly says that PPI's (prilosec) are routinely under-dosed. I even faxed all this info to our pediatrician.

My request went on deaf ears. I was asking for another medicine (Zegerid) that I had described in a previous post on reflux and asked her to write my insurance to ask for it, she said that I'd have to talk to GI at this point. (and she' d put in a referral).

(According to Marci-kids: " Zegerid is currently the only FDA-approved immediate-release formulation of omeprazole, and is very suitable for giving to children and infants. It contains omeprazole, a PPI that is approved by the FDA for pediatric use. When mixed with water, the powder dissolves to form a true, homogeneous liquid suspension with a peachy-mint flavor. Unlike enteric-coated PPIs, which must be taken 30 minutes before a meal, Zegerid can be given without regard to mealtime.")

I emailed/called our GI on Tuesday, never heard back, called the GI's nurse on Friday, she called me back saying it would have to wait until Monday, as Quinn has never been seen by our GI and that the nurse would call our pediatrician. Oh, and I asked our pediatrician for Zegerid about 4 weeks ago now after I said Zantac wasn't working


....anyways, back to my recap: I diluted the tablet in a spoon with a tiny bit of milk, spoon fed it to him, lost quite a few prilosec "granules" down his chin (very hard to administer this drug orally as compared to K's gtube - see, how can I complain?))

Tried to give him milk again. Lo and behold he took another ounce. He pulled himself off nipple and started arching. (reflux sign) Burped him, (he always cries after burping, a clear reflux sign) settled down again put him down yet again went to change Kaitlyn's very runny poopy diaper (reminds me that's another post I need to do as she always has very runny poop)

Heard Quinn start to fuss/cry again. Ugggh. holy crap. F$%)# Shit and all. Bad language is coming to my head (not out lout due to K's sake) I'm staring to really loose my patience at this point. This "fussy" session has now been going on for over an hour. I can feel my blood pressure start to raise. I'm feeling sorry for myself and doing my best to try to survive. I've got to get K in the bath. I put her half dressed on the floor and tell her I've got to go attend to Quinn. He's really screaming again. I pick him up, he's stiff as a board, burp him, he spits up all over me and the floor behind me. I try to see if he wants any more milk, he gets upset, starts crying with the nipple, pushes it away, so I give him pacy, he calms down and he drifts off after rocking him so I put him back down.

Kaitlyn is loosing it at this point too, she can tell mom is upset and she's really cranky without her nap (even thought it's about an hour before her normal bedtime). really cranky. Getting into one of her repeating/whiny modes.

Oh my god, I need a glass of wine. (I'm sure you realized that Brian wasn't home). Then I always say to myself, Liz, you can't complain. You wanted a 2nd child. Quinn is almost full term. He's a "normal" baby, this is just regular old motherhood stuff. Stiff it up. Don't complain...

You suck is also what I was saying to myself.

This doesn't seem normal on one hand, but I don't have the faintest idea of what normal is or should be like.

Ok, sorry to regress again…

Give K a quick , (VERY quick) bath as she was complaining the whole time (note to self, K is NOT ready to give up her nap yet) , dress her, and lo and behold guess who I hear AGAIN and on top of that I hear a beeper going off, I forgot that I put something in the oven for me and the timer was going off….try and shut my ears….He can just cry for a bit. .. (the swear words to myself are really getting bad at this point).

Ignore Quinn. Read a SHORT book, K starts crying, wants another book. I ignore her and put her to bed. She’s fine, she’ll be asleep right away. Thank GOD that Kaitlyn is a great sleeper. See how can I complain???

Walk out to the bassinet. Pick up Quinn, he’s stiff, stiff, stiff burp him, feed him, etc, you get the drill.

Now that K is down, I have time to get Quinn ready for night-time bed (Trying to do what I can to sleep train him by doing a night time ritual, diaper, PJ’s sleep-sack, some milk, bed). Have to bring her back to K’s room (which will be their shared room if/when he ever starts sleeping at night). K of course hops up and starts wanting water, tell her I’ll get her some, Quinn starts smiling at me as soon as he’s on the changing table and I say to myself:.

Horrible, horrible mother, how can you be so upset at this amazing sweet little boy who is smiling up at you – how can I have those frustrated feelings while I’m trying desperately to get him to burp? UGGGH…..

My food hadn’t cooked enough, so I had reset the timer for 10 minutes. Saw that there were 5 minutes left on the timer, thought maybe I should turn it off in case I’ll be awhile again….

Bring him to his bassinet in our room, give him more milk (wow he takes more, another ½ ounce), burp him, (man I really need to change my spit-up covered shirt by this time) see if he wants more milk, he doesn’t as he pushes nipple away and cries, give him pacy, he’s happy, settles a bit in my arms (typically what he does when he’s really content), but I can tell we aren’t done yet. Timer of course is going off.

Put him down, I’m STARVING. We are now about 1 hour and 30 minutes into this fussy/crying /eating ordeal….Get my pot-pie out of the oven, I get a class of wine, I sit on the couch, and 4 minutes later he starts crying in pain again.

Holy Shit. I can’t take it. WHY can’t I get the medicine that I think he needs? A fellow online micro mom just told me that her daughter (also 13 pounds) is on 2 full tables of prilosec a day! And our fucking doctor has given us ½ tablet. UGGGGH, I’m so upset at this point.

Do I suck at this mother hood stuff or what I ask myself yet again.

I get more milk from the fridge, (Damn my boobs hurt as I’ve delayed breast milk pumping for the last 2 hours over this whole ordeal).

Go in, try to calm myself. Pick him up (much too abruptly) get a huge burp (Oh I may not have mentioned that of course we have him sleeping on an incline), see if he wants more milk, he takes about 1/3 of an ounce, pushes away, but this time doesn’t cry while pushing away. He’s gently kneading my shirt. Oh, I think he’s finally settled down. Oh I love the kneading. It calms me down. I give him pacy, he takes it easily and practically goes limp as I cradle him. I love my little man, but he is giving me a run for sanity.

How can I have all these horrible thoughts. It’s now about 2 hours after this started.

This happens a LOT!

This same ordeal above happens also in the middle of the night. He awakes from sleeping and eats, pulls away from nipple, burp him, see if he wants more, he refuses, put him down, sleep for a few, then the fussing starts, and this goes on for 2 hours.

During the day he often wakes crying in pain after a quick 20 minute nap. The most he eats at any one time is about 3.5 ounces, but that’s really, really rare. His usual is about 2 ounces at a time.

Uggh. I can’t complain. Isn’t this just normal hard newborn stuff? I have no idea really. I feel horrible guilty complaining. I think back on all that we went through with Kaitlyn and how can I complain.

But I’m somehow starting to think that this isn’t normal. God I hope that our GI calls tomorrow. I’m emailing/calling her again, with a desperate plea for help.

Been too busy writing this to drink my glass of wine. And THANKFULLY since the last episode he has gone down. I KNOW he’ll be up again about midnight though, with at least 2 or 3 times after that

Sigh....

Time to hook myself up to the breast pump

Or, darn, as I’m trying to post this, guess who just started fussing again? It’s 10:45pm…
big sigh.....

Added: 1/5/09:

Thanks everyone for your great suggestions: Here are a few more notes

1. I've tried Mylicon, no change

2. Tried Zantac, worked for a bit, but still Quinn was screaming

3. We keep Quinn upright at all times! he sleeps on a ramp/incline, but maybe I need to carry him in a baby carrier which is totally upright.

4. I'm currently almost completely dairy free in my diet, as he is getting fresh pumped breast milk, this has been hard for me to be 100% dairy free as I'm too skinny now and having trouble finding things to eat. I'm actually weaning from the pump. Just too much going on. I decreased from 4x a day pumps to 3x a day in the last 3 days. I plan to stop as soon as I can. I know that I have MONTHS of milk in the freezer, maybe that's why it was tough for me to admit that possibly he might have dairy issues as that was a lot of effort in my freezer...uggh.

January 4th.....Due Date Anniversary

Today was supposed to be Kaitlyn and Corinne's Birthday 3 years ago.

Instead Kaitlyn is now 3 years and 3 months and her sister isn't by her side.

My girls' Anniversaries (due date, date of amnio, date of birth/Corinne's passing) are getting easier, but they are still hard. Some Anniversaries just fly by, with no fan-fare, but typically sometime during the day the realization that the date is "An Anniversary" typically hits me with a wave of emotion and a feeling of your stomach dropping, like you are on a roller coaster. When will this stop?

As much as this feeling used to be a sorrowful and tearful, these days I think of it more matter-of-factly, all these anniversaries that dictated the way my life would turn out forever. It sucks that these dates have to exist at all.

But I do look at some positive of how my life changed. (new friends, awareness of miracles, awareness of simple joys, helping others), but that's also the topic for another post

--------------------------------

Today as a family Brian, Quinn Kaitlyn and I went to Fairyland (a very old toddler park in Oakland built around Fairy Tales). We had so much fun. I took all kinds of videos, showing Kaitlyn talking up a storm. I'll try to post them soon! They brought such joy to my heart and I totally forgot that today was another Anniversary date.

We've had a nice family few weeks of Holiday Vacation. I think what I enjoyed the most was the fact that Kaitlyn was out of school and didn't have any therapies or doctor visits. Now that I think of it, this is the first 2 weeks she has ever gone without some sort of visit. Isn't that crazy? Brian took a few weeks off (he delayed his paternal leave) , as otherwise there would be no way for him to have holiday days off work.

I promise soon to post a really really great post on Kaitlyn. Her eating and talking are amazing, I mean really really amazing. Off the charts amazing in fact! (not the volume that she eats but her desire to eat!)

Today I have to post a more somber post, because I'm having a tough time.... I'm actually going to do it in a separate post as it has nothing to do with it being January 4th or Kaitlyn. It's Quinn....