Friday, January 16, 2009

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

Thursday, January 15, 2009

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

Wednesday, January 14, 2009

Thoughts for the day


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.


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!


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!

Sunday, January 11, 2009

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, 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.)

Sunday, January 04, 2009

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 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


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....