Holiday 2007

Here are some Christmas Pictures (and more) for your enjoyment:

The McCarthys, Christmas 2007

If you read about our Back-yard excavation project, you can see a bit of it out the window.

Uncle Gary ans the Traditional Christmas Pants (My dad wore these for YEARS until they were handed down to my brother Gary). Kaitlyn really loving her "Christmas hanger" See, we didn't need any presents!

Boys-will-be-boys....A little tequila holiday cheer tradition Christmas Day at my Step-family from LtoR: Mark (step-sister's Ash's husband), Derek (Step-sister Whit's husband), Brian, Gary (my brother), Dick (my dad), and Brad (step-brother)
Brian, Kaitlyn and Uncle Gary
More than opening the presents, Kaitlyn loved jumping on them with her "Christmas hanger"
Christmas Day Family


Kaitlyn having fun in the mall after Santa Picture
She loves to run around

Look at that big smile!

No snow here, but there's always wishing...

Kaitlyn "working" at the Bay Area Discovery Museum 2 days before Christmas
Dad and Kaitlyn as the Discovery Museum

The mall Santa, she amazingly wasn't afraid

Uncle Gary (my brother) Kaitlyn and Liz on Christmas Eve at a very decorated house in my neighborhood
Kaitlyn on Christmas morning with her new Trike
Actually getting the "concept" of presents
Making Christmas cookies at home
Mom helping Kaitlyn decorate cookies at our neighborhood Winterfest
Egg Nog, Yumm! No, wait, that's a cup full of vomit! Ok, to end on a "special" note, this vomit was from yesterday. It was SOOO huge I had to weigh it, 7 ounces! Oh lord, when will it end. All that work to get the food in and...so frustrating!

Happy Holidays 2007!

Happy Holidays to you and your family! Wow, 2007 certainly flew by! And what a year it’s been.

Update on Kaitlyn:

Kaitlyn turned 2 on October 4th this year, although, technically she really won’t be 2 until January 4 which was her due date. (Developmentally, she is still being tracked according to her due date.) We feel so touched and blessed to have our little miracle in our lives.

It’s hard to believe that our miracle daughter who weighed 1 pound, 10 ounces at birth is now almost 24 pounds and 33 inches tall. She’s doing amazingly well for how sick she was. She is walking (and running) all over the place. It’s very cute when she tries to jump, but can’t get off her tippy toes.

She’s incredibly good-natured, and is starting to smile a lot more. She has the sweetest personality. She rarely gets upset, unless mom leaves. Sadly, dad isn’t very happy about that, but we think it’s a good thing that Kaitlyn finally bonded, as if you remember, her first year she never once smiled and avoided looking at us. (It’s helped that she got glasses in the beginning of the year and loves them!)

Kaitlyn also has been talking now for a number of months. Her voice is either very quiet/sweet sounding or raspy, as her left vocal chord is paralyzed (permanently). We were so ecstatic once we finally heard her sweet voice. And it is very sweet! In addition to saying “bye-bye X to everything” She’s just started putting some small sentences together too, like: “dark outside”, “yellow lamp,” “Mama car”, "Papa car", "help peeze." She has a huge vocabulary, I’m always amazed that she knows some of the things she does, and she knows a lot of words in Spanish too! Even more amazing, Kaitlyn has learned the entire alphabet by sight and sound. You can point to a letter and she’ll say the letter as well as say the phonetic sound. She’s even starting to know the letters in order. She’s one smart little lady!

Unfortunately, Kaitlyn does still have some issues, primarily around eating, lungs and her sensory system. Kaitlyn still vomits a lot. We were able to successfully transition her to a Blenderized Diet (real food in a super-duper blender) that we “push” manually through her feeding tube. She still didn’t eat anything orally, but this decreased her vomiting a lot.
Starting in July Liz researched and located a very specialized feeding therapist who does an intensive feeding therapy program based out of the home. After an intense battle with our insurance company we were able to get this expensive therapy approved and after the first week Kaitlyn started eating 80% orally!

This was huge! Kaitlyn can only “eat” purées, and unfortunately we have a ways to go for her to get the concept of “chewing” without gagging and retching. Her 4-5 daily feeding sessions require a lot of work on our part and often times all our work is in vain as she continues to vomit (for unknown reasons). We still feed her throughout the night with her feeding tube manually to get the extra calories in her. It’s a constant struggle. Her weight growth is hard-won.

Lungs. Kaitlyn does have Chronic Lung Disease, so we are still hyper-diligent about her catching colds, but we are not under “hibernation” orders this winter which is glorious! I can actually take her to the store – what a concept! Whenever she gets sick, her oral intake of food drops to 0 and her vomiting increases horribly. She typically looses over a pound. We are currently on our 4th cold of the winter already. We have to give her round-the-clock breathing treatments and we hope/pray that it doesn't go into pneumonia. She is still getting winter monthly ($2.5K each mo) injections of a drug to help ward of a life-threatening virus called RSV. Thankfully, knowing how sick her lungs were at birth, we’ve been very, very lucky. Kaitlyn has never once been re-hospitalized, which is a huge accomplishment.

She in fact has been sick the last week and has lost 1.5 pounds! So much for finally reaching 24 pounds, now she's back under 23 pounds again. It's so frustrating. She's on antibiotics for an ear infection. She coughed for 30 minutes straight (without stopping) that I thought we were going to be on our way the ER, but thankfully the breathing treatment did it's job. I thought I was going to have to pull out the oxygen.

Developmentally. Kaitlyn is doing extremely well. She is a bit behind on her motor skills (from her adjusted age), but she is doing so well in this area that we are dropping her Physical Therapist. Her primary issue at this point is that Kaitlyn has some mild Sensory Processing Disorder (SPD - in a way it’s on the autism spectrum). Kids with SPD either seek out or avoid sensory input. Kaitlyn is a “seeker”. Her system needs much more “sensory” input than a regular person. She is constantly on the go, has a very hard time sitting in one place, rubs up against things, even sometimes lightly bangs her head and spins. She is starting a new weekly therapy after the first of the year to address this.

Kaitlyn keeps us very busy. This year, Kaitlyn had approximately 200 therapy appointments and 20 Doctor Appointments. (She has therapy 4x a week, plus the intensive feeding therapy) Not to mention the vomit and feeding sessions. Oh, and the fact that she’s an active toddler!
Thankfully we found an amazing helper, our nanny Julia has been our live-saver! I can’t say enough how much she has helped keep my sanity.

Brian still loves being a fireman. He will be transferring to Station 1 (downtown SF) after January, he’ll be on the truck and will get very little sleep (as it’s the busiest station in the city). He’s also been hard at work building a “rock-crawler” project that is currently housed at his friend’s house up in Tahoe.

Starting in the fall Brian began a back-yard excavation project where we doubled the size of our back-yard. He has put in one concrete retaining wall, with a 2nd still to come. It’s been a LOT of hard work and much more $ than had hoped.

Liz continues to love being a Real Estate Broker and even with the market-downturn, had a great year and making a lot new client/friends in the process. Liz constantly researches out therapies and solutions for Kaitlyn as well as manages Kaitlyn’s busy schedule. Liz serves on a board as VP of Membership for the Women Council of Realtors in Marin. The micro-preemie support group she started last year now has almost 200 members, globally. She is in a feeding tube support group and is involved with fund-raising the March of Dimes in prevention of prematurity.

As a family, we went on our first trip via plane over the summer, we traveled to Chautauqua (Western NY) and spent 10 fabulous summer days with the McCarthy’s.

Love & Peace: Liz, Brian, Kaitlyn and her much-missed angel sister ^Corinne^.

Happy Thanksgiving to everyone!

A rare picture of my mom and dad together, with their grand-daughter. Taken in LA over Thanksgiving weekend. And rare because Kaitlyn is smiling!
Grandma Corinne and smiling Kaitlyn!Grandpa Poppy and once again, a smiling Katilyn. I think this is the most smiles we've had captured on film in a long time! Guess she needs to be around her grandparents more! :)
Grandpa Poppy helping Kaitlyn on the piano

Our little one reading on the potty (taking after her father). we've had a few more peepees in the potty, but still have a ways to go to being toilet trained!

Happy Belated Thanksgiving!

Here’s a quick run-down of recent events with the McCarthys:

I went to Las Vegas for a work trip for 5 days in mid-December (Kaitlyn was NOT very happy to have mom gone).

Upon returning, I worked 2 days straight with an out of town home buyer, then left the day after that for Los Angeles for Thanksgiving. (Just Kaitlyn and I, as Brian had to work on Thanksgiving). We drove to LA from SF. Quite a feat. Kaitlyn had just caught a cold too, so lots of vomiting, no eating, made for a really fun (and LONG) drive.

Sadly, on Thanksgiving evening, my Step-Grandfather George passed away. He was 98 and had been very sick for the last 6 months, but it was very hard on everyone. My mother was so torn, as she rarely gets to see Kaitlyn, but there were so many things to do to support my step-father, Rich. It was a very sad time for all of us.

I decided to drive home late on Sunday to try to avoid the Holiday traffic, so I left LA at 7:30pm and made it home at 2:30 in the morning. Much easier driving with a toddler while she is sleeping.

The next day my nanny was working elsewhere and I was a stress case as on Tuesday I had to give a presentation to 65 people which I haven’t even started yet! Our nanny was able to come at about 1:00. So I started work on my presentation. At about 5:30 pm, she came to my office in tears. She was in terrible, terrible pain. (I felt horrible that she was watching Kaitlyn and I hadn’t even realized she was sick). She ended up having to go to the Emergency room, and was admitted with gallstones and an enlarged pancreas. She stayed for 3 nights.

Brian had to work on Tuesday, the day of my presentation, and now I found myself without childcare. What in the world was I going to do? Thankfully, my wonderful friend Lucy helped me out, and I brought Kaitlyn to her house and said, if she can eat a bite or two of yogurt that’s fine with me.

The day finally ended and can I tell you I was exhausted! I don’t think I’ve slept in 3 weeks.

Our nanny wasn’t able to work for a week which meant not much work for mom getting done.

She’s sort of part-time now, while she’s still dealing with a lot of medical issues.

It’s made me realize a few things:

I don’t know how working mom’s do it? Without help, I’m a complete basket case. By the 5th feed of the day I’m so frustrated, cleaning up vomit. Taking her to her multiple therapies each week and then using my one hour of nap time to try to get something done….

I’m so lucky to have such a wonderful care-giver. Now that I’ve gone without her again, I am so much more appreciative of her help and love for Kaitlyn.

Kaitlyn now no longer likes me to leave her side. I think it was due to my going out of town for 5 days. She’s a basket-case if I’m away from her, but this is typical toddler behavior, which is a great thing if you know Kaitlyn’s history of not-bonding.

Kaitlyn is no where closer to understanding how to chew. She’s continue to gag and vomit and/or swallows food whole. She is still eating purees like a champ however, but we get terrible refusal behavior if we don’t have her DVD to watch. I cant’ wait until we can get rid of that distraction! I feel like a HORRIBLE mother when I have to feed her in public and I whip out the DVD. Oh, if they only knew that just a few months ago she ate nothing at all!

Well, that’s about it for now. I know you’ve all been anxious for some news.

We have peepee in the potty!

Today was a momentous occasion- Kaitlyn peepeed in the potty! Boy, it's amazing what I find exciting! Welcome to motherhood! I guess I still am a first time mom who finds peepee thrilling! Just one time this morning, but it's a start!

Wow, my little former 1.5 pound baby is growing up!

Halloween 2007. My friend Lisa and I spoke before Halloween and discovered that all of our kiddos were going to be ducks for Halloween. She decide to bring her "gaggle" (not sure what a group of ducks is called) to our house. Lisa has 2 sets of twins! Yes, count them - 4 little duckees! I met Lisa due to one of her Duckies severe feeding issues.
Mom, Dad and our little duck!

As promised Kaitlyn's ABC's!

We have a genius!

OK, is this freakish? (I've heard it's very early to learn), but Kaitlyn knows almost all of the letters of the alphabet!

I captured a video of it today, will try to post over the weekend. It's too cute!

She knows almost all of the letters and that's at age 22 months adjusted. (not even 2 years old yet)

Liz

Learning to Chew Lumpy Purees

Here is the first day with DR Patel of eating fork-mashed purees. THis is Carrots - not easy for Kaitlyn (make sure you watch all the way through for a GOOD size vomit)

Playing with Syringes

Don't all kids play with syringes? Maybe something is strange here if I find this so "normal"!

October 2007

October has quite a lot of memories for us:

2005:

-The month we found ourselves in the Hospital delivering our girls way too early.

-Having our first born daughter die in my arms

-We were on our way to our first Halloween NICU Reunion party while Kaitlyn was still in the NICU (we wanted to see other children who were doing well to give us hope) but we were called by the NICU that Kaitlyn is NOT doing well and we should come in right away and skip the party.

2006:

-Kaitlyn learning to crawl on her 2nd October

-dealing with vomit up to 20x a day

2007:

-Kaitlyn learning her letters during her 3rd October

yes, unbelievably, at almost 2 years old (adjusted) Kaitlyn knows about 10 letters from the alphabet! (She learned from her fridge magnets). She knows: S, B, D, K, O, P, D (and a few others) and her favorite W (and the first one that I Realized she was saying W!) I promise to video tape this soon! It's so amazingly cute. Her vocabulary has really taken off. Her sweet, quiet little voice (that we are SOOO joyous to hear) loves to talk!

2005- 10/31 NICU-

Kaitlyn's first Halloween (2005) wearing her Halloween Hat

Dad wearing the hat for perspective

One very small precious baby "celebrating" her first Halloween

Kaitlyn's 2nd Halloween at the Pumpkin Patch (2006)Kaitlyn's first NICU Reunion Party (2006) with Nurse Mary

Mom and Kaitlyn at the Children's Fall Party at a nearby school before we went to the Pumpkin Patch (2007) My good friend Keri (from college) and her 2 wonderful boys that hadn't seen Kaitlyn for over a year and wanted to finally be able to "hold her"! at the Children's PartyKaitlyn today at the pumpkin Patch (2007) What a difference!
The McCarthys at the Pumpkin Patch (2007)

Our girl is VERY Strong. She kept trying to lift the big pumpkins and had some success. we showed her the smaller ones more her size.
The pumpkin climber. Kaitlyn had a ball. She ran all over the pumpkin patch.
Helping Grandpa Poppy (my dad) carve pumpkins after the patch

Trying out the Pumpkin top Hat

This weekend, at the 2007 NICU Reunion Party. Kaitlyn was a bit out of sorts, a shy girl came out with all the commotion of the party, and she was snuggling with me! You won't hear any complaints from mom. I rarely get snuggles. It was great! Of course that rapidly wore off and she was off and running. Here's a picture with Kaitlyn's twin "Ethyn." If you recall, Kaitlyn and Ethyn spent a lot of time together in the nicu. They both lost their twin siblings, and Ethyn's family became very important to us. They just had a new almost full-term baby Michylle. I'm joyous for them!

No VOMIT!!

Wow, what a headline.

Not sure why exactly, but the last few days have been amazing.

Kaitlyn didn't vomit ALL day yesterday, and so far so good today, which is a rarity for the morning feeds. And she only vomited 1 x the day prior. I don't know when this last happened.

The only main thing that is different is that she is on an antibiotic for her sinus/ear infection.

I think it's hard to explain how I feel exactly, but let me try to explain how I don't feel:
-The dread when the vomit starts to come up.
-The irritability when you work so hard to prepare a meal and get it down her and then have it come back up.
-The uckyness of cleaning up vomit

How do I feel with a day of vomit freeness? ELATION!

In case you missed vomit, here's a picture of vomit I caught a few days back.


Oh, and other great news, Kaitlyn's face looks really great a week after her accident. I can't believe it's been just a week, I'll try to remember to take a picture this afternoon, but she's healing very quickly.

A Horrible 2nd Birthday

Kaitlyn’s 2nd birthday didn’t end up like I had planned. I didn’t expect to find ourselves back in the hospital and the ER Room on the 2 year anniversary of our daughters’ birth.

Let me say that she’s amazingly ok….

Stepping back a bit, Kaitlyn’s been sick again for over a week so we’ve been taking it sort of easy lately (remember she has lung disease and is at risk for severe lung issues). We decided to go to San Francisco for her birthday on 10/4 to watch the Blue Angels (for 4 days for Fleet Week the Arial show is directly over the city and the Bay).

We drove to SF and strapped Kaitlyn into her BOB Jogging Stroller. We walked down to the sidewalk along the Marina/Break water that had a grassy area nearby, knowing that if Kaitlyn grew tired of being in the stroller we could let her run around on the grass.

There was a small girls soccer team practicing on the grass. I said to Brian that I was so happy to finally be a mother and that I felt Kaitlyn would be able to run and play like those girls out there. I was feeling really happy.

Just as the Blue Angels started, we kneeled down and pointed the planes out to Kaitlyn and she was pointing up to them. The planes took a curving path around us and both Brian and I stood and turned to watch them. I was feeling joy at being here, with our “family” watching the planes with our daughter.

After they flew past, Brian turned back and yelled out “Where’s Kaitlyn?”

OH MY GOD. Her stroller was gone. This was maybe 20 seconds after we were talking to her. It had vanished.

It rolled off the break water into the Bay. Can you imagine the sight of her stroller missing? This memory is etched into my mind.

Brian jumped off the wall and I ran up to it and looked down. Her stroller was face down on the rocks. Her legs were sticking out. Oh MY GOD!!!!!! Brian quickly righted it and pushed it up to me. He could hardly get it all the way up, he had to hoist it up and I grabbed down and pulled it back up onto the sidewalk.

Kaitlyn just fell 8-10 feet onto a rock face/head first.

(My heart is racing again just typing this and reliving this horrible, horrible accident….I’m fact, I’m having a really hard time writing this).

There was a police substation set up not 100 yards away (for Fleet Week). I immediately took her out of the stroller -probably a bad move in hindsight (in case she had had a broken her neck), but I was desperate. Brian told me not to take her out, but it was too late. She was crying, blood everywhere I was in shock myself. Blood in her mouth, her face….

I screamed to Brian check her out you are a Paramedic. He grabbed her, told me to call 911 and ran towards the police trailer. I couldn’t get through 911 (an automatic system and I was in cue) and besides the fact I couldn’t hear a thing due to the screaming Blue Angels over head.

Brian laid Kaitlyn out on the table of the police trailer and I said I couldn’t get through to 911. They assured me help was already on the way. Ambulance and engine came (remember this is where Brian works as a fireman). I really only remember some of all of this at this point.

I carried her to the Ambulance. She was inconsolable.

They told me to get on the gurney and then I held Kaitlyn, we were going Code 3 to the hospital. OH MY GOD.

At this point, when I looked out the back window of the Ambulance and saw a police escort on a motor cycle I had a complete break-down. I started sobbing (I can’t believe I held it together until this point). (Brian later told me that we had a full escort with more motor cycle cops in front –and that this is REALLY rare).

I can’t believe we were going back to the hospital with my daughter on this day. On October 4th - On The day I lost Corinne. Please don’t let this be happening. How could I have ever let go of the stroller? Please let Kaitlyn be ok. What a horrible mother I was…

They asked if she had any medical issues? Ha! Where to start. You know the drill: Micro preemie, weighed 1.5 pounds at birth, lost her twin sister, 4 months NICU, chronic lung disease, on inhaled steroids, GI issues, paralyzed vocal chord….(they felt her stomach an freaked out till we stated it was a gtube)

Brian blew up a glove as a balloon, and amazingly Kaitlyn quieted down and said “Balloooon” in her sweet voice. This was the first moment I felt some hope. She was talking. She was recognizing a balloon. I just kept saying to myself she was going to be ok. Everything was going to be ok.

We got to the hospital, there was some confusion, as my husband made them go to a particular hospital (where the girls were born) as opposed to the Trauma Center and the hospital staff wasn’t very happy about that.

They took the glove balloon away from her and popped it (some Nasty Nurse Nelly saying it was dangerous and asking why we weren’t at The General Hosp?) and of course Kaitlyn went into hysterics again after her balloon was gone.

After examination and an hour later Kaitlyn was sent for a Cat Scan to check for any internal injuries. By this time she had calmed down a lot and was actually snuggling in my chest. She got very worked up with the IV insertion (of course) and wound clean-up, but I was starting to feel a lot of relief at this point.

We got the results and the Cat Scan showed she was just fine, with the exception of a Sinus Infection (remember I said she was sick)? What an expensive way to confirm she’s sick.

We were released about 3-4 hours afterwards. I was in shock the whole way home. I can’t believe I let my daughter roll off a cliff. She was finally given some pain medicine before we left and that really helped her.

Her face was already black and blue, and swollen. They patched up a cut on her lip with glue (instead of stitches). Her glasses probably saved her eye. You could tell that her glasses had dug into her face. Remember all those times strangers have asked me if her glasses were for “eye protection”? Well I guess they were!

They told us to watch out for excessive tiredness (from head trauma), but a bit hard to tell as she was recovering from shock too and was wiped out. She slept for a few hours but then started crying uncontrollably. I was able to quiet her down when I held her and finally I went to sleep with Kaitlyn in my arms (the first time she’s ever let me hold her for so long). It made me feel she really does love me. (sometimes I wonder as she missed out on so much bonding time being born so early and my not being allowed to hold her until 5 weeks after she was born).

We ended up eating Kaitlyn’s birthday cake that night ourselves, as we know she wouldn’t “eat it” and we figured we needed the treat more than she did. What a 2nd birthday.

The next day we kept her on Ibuprofen and she was definitely not herself. Her poor face was so sad, swollen and black and blue. I was so afraid that she wouldn’t be able to open her eye as it was so swollen, but she was able to.

Thankfully, though she slept through the night easily on Friday night even after her pain medicine wore off and by Saturday morning she seemed back to normal (except her cold which seemed to be worsening). They said she didn’t need antibiotics if she didn’t have a fever (from the sinus infection) but hard to tell as she was on Ibuprofen for pain for over 24 hours. Her face actually looked a bit better. I thought it was going to be much worse by Saturday as bruising typically gets worse before it gets better.

I have a few pictures of Kaitlyn’s face on Sunday. I was just too freaked out to remember to take any pictures of her after the accident when she looked so much worse. I had to go back to SF on Friday to pick up the stroller (it was still at the police station). I took some pictures of the wall. I was still in shock on Friday myself. I freaked out looking down the wall. What if she had landed in the water? I just couldn’t believe that she was going to be ok. How in the world could I have let this happen?

I know once again that Kaitlyn's sister Corinne is looking out for her - her very special Guardian Angel. And also, my daughter Katilyn is the most amzing, strong little fighter a mother could ever hope for. I'm touched to be her mother.

As a “funny” side-note, on Friday Kaitlyn decided she likes BBQ Potato Chips. I mean really like them. I’ve NEVER heard her ask for anything (besides the occasional water), but she likes to eat chips and was getting upset, signing more and saying “more chips.” I’ve never heard her say more to anything (food or not food). Kaitlyn’s cousin Stella said and signed “more” to everything related to food. Kaitlyn only ever signed more in repetition of us signing more. She REALLY wanted to “eat” chips. Well by “eat” I mean take a bite of the edge of the chip, pack it in her mouth and continue to want more. If she tries to move it around, she then chokes, gages and vomits up anything that she last ate.

I said to Brian, “Ha, you have to have your child fall off an 8 foot cliff in order for them to want to eat and start communicating!” (I was trying to find something to feel joyful at this point). (Scroll to the end of this post for a video of chip eating from today).

Lessen Learned for me and for all parents:

The sidewalk was flat (or seemingly flat). If it had been a ramp I would have never let go of the stroller or would have made sure to have the break on. It happened within 30-40 seconds. I thought it was flat. Please, please let this be a reminder to you, especially in heavy jogging strollers. NEVER ever, even if you think it’s flat, let the stroller go without the parking break or safety strap.

I have to look at this horrific accident as trying to tell me we are so lucky she came through seemingly with cuts, scratches and bruises. Her stroller could have rolled onto oncoming traffic. Who knows. Please let our accident be a reminder to you.

Kaitlyn has "glue" on her upper lip, her eye is badly bruised, but her face looks MUCH better in these pictures taken on Saturday than it did on Friday, the day after

Doesn't this look flat to you?

This shows how far down the sea wall was

Kaitlyn's fall landed somewhere on the rocks behind the stairs before the 2nd ramp (I think). We found the stroller upside down, with her head against the rocks...

Kaitln today, trying out some of her new birthday presents, seemingly just fine after her horrific Birthday accident.

Today. She was just too cute. J (see below) gave Katilyn new pants and hat for her birthday.

Sunday, showing her face looking much better, with "J" our amazing nanny. When she heard about Katilyn's accident she had to come see how she was doing on her day off.

These last 2 pictures were taken a few days before her birthday, showing off her new glassess (without a head strap!) they are a bit big though and thankfully we had just taken them off and put on her regular (strap behind the head glasses) right before the accident.

Lastly, here is a video of Kaitlyn's new love for chips (as well as some of her great new talking skills and of course what would a eating session be without vomit?)

The Eve of October 4th

It's here once again. The day that should be joyful but isn't

Tomorrow is my twins birthday and the day that Corinne took her last breath. It's the day to celebrate Kaitlyn's life and how well she's doing. It's the day that I hope I don't cry.

2 years ago tonight my labor contracts started in earnest and this time they couldn't be stopped.

Happy Birthday Kaitlyn! Happy Birthday Corinne! We know that you are watching down on your little sister and watching out for her. Kaitlyn misses you. We miss you.

The stones above were made in honor of our girls by my mother in law, Markie and are at their summer home in Western NY. Thank you Markie, they are beautiful.

SPD?

Is it the curse of being a preemie mom that you constantly worry about your child?

Why is it that I can't just be happy with how well Kaitlyn is doing?

Is it because I know too much?

Here is a list of symptoms for infants with SPD (Sensory Processing Disorder) and my answers for Kaitlyn.

From: http://www.spdbayarea.org/sensory_processing_disorder_checklist.htm

Infant/ Toddler Checklist:

__Do I need to answer this one?__ My infant/toddler has problems eating.

__NO__ My infant/toddler refused to go to anyone but me.

__NO__ My infant/toddler has trouble falling asleep or staying asleep

__Yes (sometimes, the dressing part, she's not uncomfortable in clothes)__ My infant/toddler is extremely irritable when I dress him/her; seems to be uncomfortable in clothes.

sometimes-easily furstrated__ My infant/toddler rarely plays with toys, especially those requiring dexterity.

_YES___ My infant/toddler has difficulty shifting focus from one object/activity to another.

__YES (well, she usually noticed, just has a very high-pain tolerance)__ My infant/toddler does not notice pain or is slow to respond when hurt.

___YES-YES!!!_ My infant/toddler resists cuddling, arches back away from the person holding him.

_YES___ My infant/toddler cannot calm self by sucking on a pacifier, looking at toys, or listening to my voice.

___SOMEWHAT, she bumps into things all the time, but isn't floppy- _ My infant/toddler has a "floppy" body, bumps into things and has poor balance.

_YES (just started)___ My infant/toddler does little or no babbling, vocalizing.

__NO__ My infant/toddler is easily startled.

__YES- YES- YES (this is my biggest worry)__ My infant/toddler is extremely active and is constantly moving body/limbs or runs endlessly.

__No__ My infant/toddler seems to be delayed in crawling, standing, walking or running.

a New mom...Congratulations Jenny!

This is an email to me from my good friend Jenny, who just delivered (yes a little bit preemie) a healthy baby girl.

For my LONG time blog readers, Jenny is Ethyn's mom. Ethyn was Kaitlyn's "twin" in the NICU. Ethyn lost his twin just as Kaitlyn lost her twin. Jenny and I enjoyed calling each others babies their twin. Ethyn was a very sick little guy (born at 24 weeks) and is doing really well now, but he has eating issues and is developmentally delayed (like Katilyn). Ethyn was in the NICU for over 5 months, and came home the day after Katilyn did. The NICU let us choose our NICU isolettes so we could be next to one antoher, as we both spent a LOT of time at the NICU for those many long months.

Great news! Jenny just had a beautiful baby girl, Mychelle. Here is her note to me:

Things are going wonderfully on the homefront. Mychelle is an awesome sleeping, eating, pooping machine. I have to tell you it's just so wonderful to be able to breastfeed her. I was pretty stressed initially because I couldn't tell how much she was taking in or if she was gaining weight (typical preemie mom fears about weight gain), but after her one week appointment where we found out that she was actually above her birth weight I was able to just go with the flow.

Having a full-term baby, which I consider Mychelle to be even though she is technically a preemie, is just so, so, so much easier. Sure I'm sleep deprived because I'm nursing Mychelle on demand which is typically every hour and a half, but I love the fact that she's actually demanding food. And sleep deprivation due to nursing is nothing compared to what we went through at the NICU or even afterwards.

Right now, Ethyn is still the challenge given his feeding (which is better) and his schedule.

Oh Liz, I want so much for you to experience the joys of having a full term baby. We definitely don't love our babies less, but we did miss out on the typical motherhood experience.

Autism/Vaccination link?

Forwarded to me today: What do YOU think?

September 25, 2007
America, Meet Our Unvaccinated Kids, Version 2.0
Jb_handley_photoBy J.B. Handley

Back in June, we released what we felt was an astonishing data set for the first ever study comparing the rates of ADHD, autism, and asthma between vaccinated children and unvaccinated children. Our conclusion was weighty:

"We surveyed over 9,000 boys in California and Oregon and found that vaccinated boys had a 155% greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys."

And, the mainstream media wouldn’t touch it.

Cynics will say this is because our survey was only a "phone survey"despite the fact that phone surveys are reported in the news every day, and despite the fact that the CDC uses a phone survey to establish the prevalence of…autism!!

As the Director of the CDC’s two phone surveys on autism noted: "the consistency of prevalence estimates across the two surveys supports high reliability or reproducibility of parental report of autism and reliability is one important component of validity."

Were we blacked out? Was our story too hot for the mainstream media to handle? Perhaps, we’ll never know for sure. That said, we got plenty of coverage and heard from places like UPI reporter Dan Olmsted, Daily Kos, and NewsMax.com, to name a few.

Fast forward to September, and the climate for listening to the parents has changed, perhaps permanently, thanks to Jenny McCarthy.

So, we ran our Ad again today, the one describing the survey results, but this time we ran it in USA Today.

With that as background, America please meet our unvaccinated kids: For the first time ever, we know something about them that may help our kids. Yup, they live right down the street from you, they are 5.6% of the population, and they have less asthma, less ADHD, and less autism than our kids seem to have. At least according to our survey.

Do we expect you to believe us? Not really. Not if you’re a member of the mainstream media or the mainstream medical establishment. But, we really hope you will look at our data. Because today, unlike the CDC, we are making all of our data public simultaneously with the release of our survey. Crunch away, and decide for yourself.

We followed a very straightforward process, so anyone can retrace our steps. We told a market research firm what we wanted to know. They designed a questionnaire they felt would get us an answer. We approved the questionnaire. They ran the survey and sent us the data, which you can now access. Decide for yourself.

Some of the numbers really jump out, particularly amongst the boys. A "Risk Ratio" is a way to compare prevalence, so that if 10% of vax kids and 5% of unvax kids have ADHD, the Risk Ratio is 2.0, or a 100% difference. Risk Ratios above 2.0 tend to be allowed in a court of law to show correlation.

We found many Risk Ratios well in excess of 2.0, and some higher than 4.0, the equivalent of a 300% difference.

Decide for yourself.

Have we proved anything today? Yes and no. We’ve proved that unvaccinated kids are easy to find, and that a straightforward survey yielded some disturbing results. What we haven’t done is design a study with enough scale and controls to be published in a first-tier, peer-reviewed journal.

But, we’ve certainly highlighted the screaming need for such a study to happen.
So, now what?

Everyone should send an email to Dan Olmsted and thank him for his Age of Autism series from UPI. He’s the one who asked about unvaccinated kids first, and asked it loudest. He even asked Julie Gerberding, CDC Director.

He just kept on asking it until we got so tired thinking about what an obvious question it was that we did something about it.

Our data should be scrutinized, analyzed, challenged, and debated by any and everyone in the autism community who cares to do so. (If you want a copy of the Excel spreadsheet with the primary data in it, email us and we will send it to you.)

Everyone and their grandmother needs to cajole their Congressperson to jump on the bandwagon and support Congresswoman Carolyn Maloney's bill to study unvaccinated children.
This incredibly brave Congresswoman from New York said in a press release in June: "What is ultimately needed to resolve this issue one way or the other is a comprehensive national study comparing outcomes between vaccinated and unvaccinated children. As the most scientifically advanced country in the world, we should be jumping at the chance to conduct a comprehensive national study to resolve the questions that have been raised. Parents deserve answers, and children deserve no less than absolutely certainty and safety."

The autism community should pull together and fund our own independent study, in addition to the Maloney bill, to gather as much data as quickly as possible. Autism Speaks, with the biggest war chest, should take this opportunity to fund or lead the funding for such a study, and help put this issue to rest once and for all. It would be a great opportunity for them to repair a badly burned bridge with many of us, and I hope they jump at the chance. The study must be run by researchers who have no history in this fight, on either side of the argument, and it must have the scale and controls to achieve wide acceptance through journal publication.

As for me, nothing much changes. My son is getting better, and we think the road map drawn by considering him "vaccine injured" is why. Knowing cause is so incredibly important to figuring out how to help and treat our kids, and I’m grateful for the pioneers who have been demanding answers for years. My wife and I hope, in some small way, that this survey moves things forward, and creates a deafening demand from parents for more answers. Now.

Runny nose = no eating

Kaitlyn has had a cold now for a week. Luckily, it never progressed into her lungs this time around. BUT it made her have a very runny nose and she REFUSED to eat!

She's been on an inhaled steroid now for about 2 months, and I'm hoping that this really helped keep the mucous out of her lungs. Yeah.

It was like before, all her behaviour came back, where she hadn't refused to eat even one time since feeding therapy began.

We stopped all oral feedings, as we couldn't allow her to "learn" that it was ok to refuse the food. It's likely that she had a sore throat from all the runny snot.

Whenever she's gotten sick in the past, her vomiting increased. This time a funny thing happened, when we switched back over to her Blended Diet (BD) her vomiting stopped. And (if you read the last posts) she's been vomiting a WHOLE lot lately. Of 4 days with solely BD, she vomited 2 times. That's really quite good. I haven't had a slow down in vomit for months now.

My fear was when we started to try to feed her orally again, which we tried today, it went actually quite well, but we were only on a small amount of oral food. Tomorrow we will up it to 1/2 and 1/2 BD to see how she does.

The picture above is a really nice vomit that surprised me after giving Kaitlyn a bath one night. It was so huge, and the spray pattern so big it caused a bit of a mess. I was holding naked K and she vomited right at the entry to her room, so needless to say, clean up was a bit nasty. When I called Brian later that night (he was at work), I told him that I was cleaning vomit out of the fan (yes you can see the fan in the picture). thank goodness the fan wasn't on, he was chuckling when I first told him I was cleaning vomit out of the fan, as he pictured K vomiting with the fan on and vomit going everywhere.

Do you feel sorry for me yet? :)

I watched some tv program (Dirty Jobs) the other day and the episode was called "Vomit Island" I just had to watch it!

Feeding Set-backs

I wish I could post that feeding has been going well, but sadly, Kaitlyn has been vomiting a lot again. At least 2 times a day, sometimes even more.

Our feeding therapist has been here now 3 times (for the first session where we had incredible successes) but the last 2 sessions haven't gone as well. Kaitlyn did SO WELL with starting to feed (with purees) that I was just convinced that that we'd be done with the tube in a few more visits.

We've been working on chewing. Boy. This isn't easy. We had to teach Kaitlyn how to bite on a chew stick at every feed. We also had to put food onto Kaitlyn's back teeth, but she either vomited/gaged, or bit down on our finger HARD with her front teeth. Her bad behavior really kicked in then (I'd guess I would too if you put something in my mouth that made me vomit and gag) and refused to let us put the food in.

For 1.5 weeks it was horrible She was vomiting 4 times every chew session, and then would still often vomit with food. (We increased the volume of purees at each food). 5 times a day, Each feed was taking 5-10 minutes to prep the food (not counting the cooking/freezing of the food), 20-30 minutes for each session, cleaning up vomit. 5 times a day.

Dr Patel told us to stop and wait for the next visit. We did continue to work on the chew stick, and Kaitlyn's back teeth chewing did improve, but she obviously had no idea what to do when any type of food entered her mouth (besides purees).

Feeding therapy continued this last week. It was really tough. I started crying at one point. I was so frustrated by what was being asked of me, and the progress was so painfully slow. This new session didn't seem all that much different than the previous session, and now I'm back to waiting for another month for the next session.

Don't get me wrong. I'm sooo thankful for Dr Patel and still 100% believe in the program. But this is really, really hard. 2 months ago Kaitlyn wasn't eating ANYTHING orally, and she is now fed 80% by mouth. But moving on to chewing seems to be like climbing Everest. (fellow feeding disorder children's moms have emailed me saying that chewing was very hard for their children to over come also). It still doesn't make this easy.

My fellow blog mom/preemie friend Kim emailed me during this. and I let her know I was having a really horrible day. Here was her reply to me. I thought it so perfectly explained my feelings that I asked her if I could post it. When I received it the tears rolled down my cheek. Thank you Kim. And on top of that just yesterday Kim had sent me (even before this happened) a new lead-free bib to catch vomit! it's great. Thank you Kim - it's amazing how close you can become to someone you've never even met in person!...

Liz,

I am so sorry. Now, please don't mistake my leaving Kaitlyn's suffering out of this email as me not caring about her. I care about her *more* than I care about any other kid that I have never met (that didn't sound right, but you know what I mean--I care about her a lot), but I want to focus on you for a second. Yes, it is horrible for Kaitlyn--we all know that, but does anyone ever take the time to say, "You know what, this REALLY sucks for Liz" ??

This is HORRIBLE. The fact that you have spent three-quarters of the last two years cleaning up vomit and worrying about every single calorie is mind-boggling to someone like me who has never had to do it (not to mention the fact that you spent the first quarter of your kid's life watching her through the portholes of an isolette). The fact that you couldn't ever just make up a bottle for your daughter, that you could never just pick her up in a half-asleep state and put her to your breast, the fact that you could never just take a travel packet of Enfamil with you to the park and spend hours there, sucks.

I can't imagine what it is like to spend the majority of your day making food, analyzing consistency/lumps/purees, filling syringes, struggling with tubing. It isn't fair that you have to hook a tube up to your daughter's stomach, that you can't even relax at night and zonk out on the couch in front of Dr. 90210 or some equally useless television show and just unwind, decompress, and that you have to drag your exhausted self off the couch every hour to push more food directly into your kid's stomach because she can't freaking eat it on her own.

It isn't fair that you have been completely robbed of the normal infant experience (I won't even get into the unfairness of losing a child--that is a whole separate email), that even if you *do* have another baby, that you will never ever be able to have that bringing-home-your-first-baby healthy kid experience.

This is awful for you. It isn't right that you have to spend hours on the phone with insurance companies. It isn't right that no doctors can tell you what makes your kid so sick all the time. It isn't right that you had to spend hours/days/weeks hooked up to a breastpump, then to have to have breastmilk shipped from all over the country just to feed your child.

Feeding a kid should be an enjoyable experience for the parents and the baby--it isn't right to ask a parent to inflict pain on their own kid, push tubes down her nose, to force their kid to do something she doesn't want to do. It isn't fair to put you in that position. Or, at least, it isn't fair to put you in that position and not give you the appropriately qualified help to deal with it.

It isn't fair that you have to do this every fucking day of your life and that you never ever get a break (except for that brief respite when you went to the Dominican, but come on, that's not *nearly* enough!).

It sucks sucks sucks. It's not fair not fair not fair. And it is okay for you to be angry. You wouldn't be a bad mother for being angry once in a while. And you aren't a bad mother for not wanting to deal with this anymore. And you aren't a bitch for arguing with Patel's assistant. You know your kid best and you shouldn't have to argue about what she does/doesn't like, what she can/can not do, etc. Your word should be gospel because you are the kid's mother, for crying out loud! You know your daughter better than anyone. They don't spend nearly every waking second with your child--you do. They didn't lie in bed trying desperately to keep her in utero for ten weeks. They didn't spend hour upon hour in the NICU pacing, worrying, praying. They traveled the thousands of miles back and forth on San Francisco's road to bring her to doctor's appointments. They don't clean up her vomit. They will never know what it is really like and they should respect the fact that you do.

Nothing about this is fair. And I wish I could snap my fingers and make it all better for you.

You know, I was going to put some happy stuff in this too--something about how you are so strong and so amazing, but you know what, I am going to leave that out because you deserve some time to be UNstrong, to be UNamazing. You deserve to let your guard down, to cry, to scream, to be pissed off. You don't always need to be the stoic, noble mother. You can let yourself be human and breakdown once in a while. You've certainly earned the right to it.

Liz, if there is ever anything at all that I can do, do NOT hesitate to ask.

Kim

ps. Hopefully this email doesn't piss you off more. My intent is just to give you the acknowledgement that you deserve--to give you permission to be angry/resentful/whatever, because I don't know that anyone ever gives you that permission and you deserve it. Many hugs to you.

Oh the life of a Micro Preemie Mom

Here's my evening recap:

5:00 oral feed - feed horrible pghlemgy vomit with her feed

7:00 oral feed- miracle of miracles no vomit

7:30 bath

8:00 bed, crying

8:10 go in room, attach feeding tube –quiet her down, but still crying once I leave the room

-Continued lots of crying...Go in every 5 minutes or so to comfort (this is abnormal for K to cry when going to bed)

I started then just saying nighty-night at her door

-About 8:40 her crying hadn't let up - not normal - so I went in and was immediately assaulted by the smell of stomach acid

-Her tube had come open and emptied the contents of her stomach onto the bed - hence the crying. I felt terrible! (not the first time this has happened, but it’s horrible!)

-Cleaned bed, changed sheets, changed pj's Gave her 2 ounces of water via tube, as I'm sure she was starving

-Rocked her for a while (normally she hates this)

-Put her back in bed, lots of crying still

-Gave her 2 ounces of food via tube, held her again, and she proceeded to erupt and vomit all over me, her clothes, the chair I was sitting in the carpet…

-Take off my shirt, (I'm covered in vomit), use my shirt to wipe her up, as it's everywhere...change her pjs (again) and try once again to put her down.

-This time she curled right up and went to sleep

Now it's time to start tube feeding her for the next few hours….

Oh the life of being a micro preemie mom.

Here's a few pictures from tonight:

Crying picture - oh it tears your heart out!

Some vomit that I caught (in the puke bucket (K's old NICU bath-tub that we always keep handy), some that I didn't, all the vomit on me and Kaitlyn isn't in the picture and old vomit stains on the carpet (to think I was just about to clean the carpet again - why bother?)

Finally, tube back attached, my little darling is curled up ready for sleep.

Some more pictures for you:

Kaitlyn having fun out at the Ultimate Frisbee Field.

My little Frisbee player is taking after mom (for blog readers who don't know me, I am a World Champion Ultimate Frisbee player, back in my "youth")

I got to play in an ultimate Frisbee tournament on my birthday! This pictures is on mom's 41st birthday. I guess if i can still play ultimate (a very strenuous running game) on my 41st birthday I'm not too old!)

This was after we lost in the finals...Kaitlyn was happy that mom was off the field again.

Kaitlyn's Physical Therapist (PT) Susan. Kaitlyn loves bouncing on the ball with Susan.

Am I crazy? I decided to "torture" myself and attend our local twins summer picnic. Torture, because it still is hard for me to see twins...and this was a lot of twins. A WHOLE lot of twins. Everyone has been so wonderful to me and everyone really wanted to see Kaitlyn so the 2 of us went. We had a nice time. It was great to see a lot of our friends that we first met when I was on bed-rest at the beginning of my saga. Can you see the syringes sticking out of my purse? thank you Lisa B (mom of 2 sets of twins) for Kaitlyn's great dress.