Vacation Pictures

Pictures from our recent trip to Lake Chautauqua in Western NY to visit Brian's Family. and Kaitlyn's first trip on a plane (across the country).

Upon first getting to the airport , our stellar travelling companion fell fast asleep in the car even before we got to airport. This was NOT what we wanted to have happen. We wanted a tired baby AFTER we were on the flight. Brian took the car to park it...will you look at the amount of luggage the 3 of us have? 2 of these LARGE bags are just for Kaitlyn...and this doesn't include diapers or bed or high chair stuff, as Elissa is going to have all of that once we get there. Crazy: we had to pack: 2 Extra g-tube mickey buttons in case hers breaks, 3o syringes for food, 10 60 cc syirnges with leur-lock for water; 10-10 cc Synge's for medicine administrating, nebulizer machine, and all the medicine that goes with it, extra tubing (extension sets), burp( we call them vomit cloths), clothes, dry ice (after finding out I could take it on the plane wit ha doctor note). My worst fear was that we would be delayed somewhere and I wouldn't have food for her, so we brought on the plane in a cooler (carry-on bag) Bottle of Blended Diet, and enough frozen cubes to bet us through 2 days, her portable dvd player with power cord to recharge, extra of the special spoons she has to use to eat, 2 bottles of the hose-type made by Dr Patel so we can squeeze a small amount of milk into Kaitlyn, assortment of dvd's to keep her interest with different feeds. We haven't used DVD's for anything for feeding up this point, but figured I might also need them for plane distraction. packing list goes on: (regular stuff here: clothes, shoes, hair clips, diapers for plane and in case of delay, sunscreen, bathing suit, baby shampoo. Oh and I have to pack too?

Well, you get the point, our luggage was enormous! Not at all like last year during this time when Brian and I flew on a MUNCH needed vacation to celebrate my 40th birthday and our 3rd anniversary in Dominican Republic - solo. We were very lucky that Kaitlyn stayed at the most wonderful place: The George Marks House in the East Bay (Northern California).. http://www.georgemark.org/

Anyways, we were off on our first Family Vacation to Lake Chautauqua in Western NY. This is an AMAZING Place that my in-laws have a 2nd home there. My mother in law worked feverishly all winter to expand the house so that her ever expanding family could all fit. Elissa (Brian's sister) and Mike (Elissas husband) planned it so that they would be there when we were. We were able to meet Cousin Stella for the first time. I'm actually an Aunt@ It's sad that we've never gotten to even meet my darling little Niece before she was 1 years old! Aunt Elissa came to visit her niece Kaitlyn 2 times (1 while we were still in the NICU and the other time we had just come home with Baby Kaitlyn finally).

We had a fabulous time on the trip, I hope you can tell by these pictures:

Kaitlyn decided the perfect time to nap was during the 45 minute ride in our car TO the airport. We couldn't wake her up, here she is sleeping in the parking lot while Brian went to get our car. Look how many bags we have! Goodness. Kaitlyn is OBSESSED with balloons...I mean really obsessed. If she sees one anywhere, she will follow that child and try to take his balloon, over and over. If we don't' find a balloon soon, we may well have other kids screaming. Luckily we found a ready balloon vendor nearby. This took place in the center guards of The Chautauqua Institution.

More pictures from the center of the Plaza. This is Brian and Elissa Tessier and their 2 daughters (cousins Kaitlyn and Stella). Kaitlyn is 6 months older than Stella, but they look very similar. Kaitlyn could do some things better than Stella and Stella could do some things better than Kaitlyn. It was a nice learning experience for the both of them. Kaitlyn hasn't been able to spend this much time with other kids. It was great! Look how much Brian and Elissa look alike...That's where I know Kaitlyn gets her looks - from her pappas side of the family.


Because she has a balloon, you are guaranteed lots of smiles! and her saying "baaalllloooo" very quietly, but she says it all right. When one balloon popped, she even started her 2 word sentences: "baba balllloooooo" Very very cute. You really have to listen hard to hear it, but it's just so sweet to hear her voice!

Some Family portraits (for the Holiday Christmas card). as it's unlikely that we would all be together again before the holidays.. From L to R: Brian, Kaitlyn, Liz , Markie (Margaret & Brian's mom),Ed (Brian's Dad), Elissa (Brian's sister) cousin Stella and Mike Tessier (Brian's Brother in law). I feel so lucky and blessed to have such an incredibly wonderful family. You always hear of just horror stories of in-laws. And I can more than honestly say I love my in-laws. They made our trip so amazing, welcoming. I feel very fortunate indeed. I just wish we lived closer!!!
A McCarthy Family Shot (with balloon of course)
We found matching outfits for the girls to take our family portrait shots...they were much more interested in causing havock back at home. Kaitlyn learned to Throw the fridge magnets across the room and started giggling when you told her to stop and pick them up. She never threw them before across the room, and she never defiantly did something you didn't' want her to do. Well there's some good here. Kaitlyn learned that behavior from Stella, and Stella learned from Kaitlyn how to put the letters back on the fridge. They were like little magnets themselves, learning so much from each other. It was really wonderful to experience.

Some more lessons, Kaitlyn knew how to Kiss (but not hug) and Stella knew how to hug and not kiss. Here they are working on practicing those new skills with each other.

The McCarthy Women! Kaitlyn, Liz, Markie, Elissa and Stella Tessier. Brian and I need to have a boy so the McCarthy name will carry on!
Another family shot, this one was taken in front of the Hall of Philosophy, one of the venues for lectures and is actually where Elissa and Mike were married just 2 short years ago (when I was pregnant and had just miscarried my triplet). It felt strange in some ways being back now, when I was here I didn't really leave feeling very well, I was so sad to have my miscarry happen during Elissa and Mike's wonderful celebration. I tried to suck it up best I could, but I was told I should stay in bed as much as possible...oh how I wish I knew then what was coming!

The Cousins causing mischief again!

Elissa had the great idea to let the girls do some finger painting....I think they had a lot of fun, but Kaitlyn (as always) is a little nervous around new things.Now they are starting to get the hang of this finger painting stuff! Painting Stellas Budda Belly!

we worked really hard to get this kiss on camera...only about 50 takes (thank god for digital cameras)

Kaitlyn's sensory issues flare up sometimes, (see above) but she did amazingly well with all of the new sensory overload...I was really pleased.

A nice shot of my in-laws with Kaitlyn! Boy do they miss her so!! Dr Ed was able to help us out with the feeding a bit (he's a Dentist), and so we got a few brief reprive. That was lovely.

Taking the girls swimming at Lake Chautauqua...Mame (Markie) is having a great time with Kaitlyn in her boat.
The girls looking at something very interesting in their boat, maybe dreaming of the next time they'll be there for the summer and they can be swimming about on their own!
Not an easy task to get them looking at the same place at the same time.

Mamas and their daughters Kaitlyn liked her inner-tube froggie
A little beach time play in the sand. Kaitlyn loves to dig up sand and put it in her bucket, over and over and over. It's great, I can actually sit on a towel for maybe, oh....5 minutes. (A reminder once again of how different life was before children). The beach was just a 5 minute walk from the home, so we were close by to go home to do the feeds every 2 hours.

Liz holding the Cousin's and loving it! Kaitlyn is signing "mama"

Not for long...

Dad, Kaitlyn and I in front of some of the cottages of Chautauqua

We did leave the Institution for a day and did a little country side driving around..Brian's Dad took over a few feeds so we could get away. We taught him what to do, and to expect vomit......We went to a place called LilyDale http://www.lilydaleassembly.com/info.php which is known for being the town that talks to the dead. Essentially it is a community of like-minded people, many of who are Mediums...they communicate with the passed. We actually tried to find an available one, as I wanted the opportunity to hear about Corinne's spirit, but there were no openings (I guess the Mediums were having their election day). We went to a "Stump Message Reading" which took place at this Inspiration Stump (we found out later we weren't supposed to stand on it) At this session the Mediums would come out and give messages to those in the crowd. I lost it a few times and was tearing up, I so wanted them to pick me, Brian thought I would be a for sure, with the tears and all, but no they choose him....and gave him a message from his great grandfather regarding hunting. (not it was a little suspect that Brian just happened to be wearing a camouflage hat)....

Any ways, this town is the largest place for the Practice of Spirituality. It was nice to visit it. I became quite emotional over the loss of Corinne and how much I miss her.

We then went to a nice local "diner" where we some at least 2 mullets (I wanted to take a secret picture, but didnt' know how to go about doing that).

After that we drove into the Amish country and purchased some Jam. A woman there told me that she had a preemie that was born 2 months early and was in the NICU for 2 months. My husband was surprised that they would even use hospitals at all. With their Dutch accent and their clothes, it was so foreign to me, but very interesting to see.

This is a picture of a family loading up hay bales (that they had bailed by hand) onto their horse drawn buggy. You don't see that out here in California.

Always nice to throw in a happy girl!

And a kiss to dad, with Stella watching (and learning)

A little book time reading from Auntie Elissa....We all had such a nice time together. I wish everyone wasn't so far away. I'd love for Kaitlyn and Stella to be able to grow up closer.

Poor Mike (Stella's dad) was very jelous of Kaitlyn's hair. I once even asked him if he wanted to put in her pig tails, as he'd need the practice!

Trying to get them to look in one dirction using water prompts
Kaitlyn has a nice soap mohalk! Look at all that hair Mike!
K and Stella having a great time together in the bath.

Walking down the red-brik walk from The McCarthy's house. Their house is a vintage cottage located right off the red-brick walk, just a few steps away from the Hall of Philosophy and the AMpithare were I was able to watch some great shows/speakers: Ballet, Symphony, Sandra Day O'Connor, A fiddler music group and more,a Pops Symphony,Judy Collins, I just can't remember right now. When you enter Chataqua for the season, you have to get a gate pass to access all of these events. Even if you own a home there, you still have to purchase a pass for the season. It's an amzing place that we on the west coast have never even heard of.
This was a nighly activity during one of the performances, just outside the Ampitheatre the toddlers were kept busy by teh grandparents, and we got to watch a bit of the s how. What a nice treat with toddlers.
In this picture, Kaitlyn is clearly saying, "now hurry up girls, you are pushing me too slowly!"
She is a very serious little car driver! It was craking me up!
Very serious!!

Finally, on a little down hill she let go and smiled and had a ball (with a lot of hands and cheers coaching her on!) Every time the audience clapped for a performance, Kaitlyn would clap too and try to figoure out what she did! It was too cute.

Markie pushing Kaitlyn, while She and Ed swing Stella. They are on cloud 9 having both their Granddaughters there.


Trying out the boat.
Brian and his Neice, Cousin Stella, already a great Steelers Fan!
Kaitlyn is puckering up to give Stella a kiss in this picture
Stella, the line-backer, is preparing to give Kaitlyn a hug! (or bowl her over)

Kaitlyn not looking too happy about one of the performances time to leave the Ampathatre....
It was raining, and Kaitlyn decided she was ready to play and splash in the puddles. BOy did she have a blast!

Stella was a bit timid about the whole water thing, but caught right on from her Big Cousin Kaitlyn!
They were both soakng wet and had a blast!

OK, to end on a sad note, Kaitlyn didnt' want to go home! As you probalby know, Kaitlyn rarely gets upset. I dont' remember now what this was over, but she looks so pitifually sad. I thought it was a good "ByeBye" picture...I'll Miss Grandma (Mame) and Grandpa (Gille), Cousin Stella, Auntie Elissa and Uncle Mike! We all had a fabulous time and miss you all already.

Kaitlyn's Feeding Schedule

I just thought you might like to see a few days in the life of Feeding Kaitlyn:

Recap of the last few days of feeding:

Friday, Every feed Kaitlyn vomited – with the Nanny, 1 with me.

Saturday: 8:30 I decided to let Kaitlyn sleep in, so I tube fed her 4 ounces of Blenderized Diet instead of dealing with an oral feed and vomit. She loves to sleep so we normally have to wake her up at 8:00 for her 8:30 feed.

Make Puree foods. Avocados, green beans, take purees from the night before out of ice cube trays and arrange in the 30 or so different zip-lock bags we have in our freezer. Clean up all the stuff.

11:00 feed. I was due to go our local twins’ summer picnic and I was alone. So I fed her orally about 2 ounces of yogurt and 1 ounce of milk (It’s supposed to be 4 ounces of purees and 2.5 ounces of milk). She kept the oral food down (thankfully) and then an hour later I fed her 2 more ounces of Blenderized Diet (via tube) and 2 ounces of water (via tube)

3:00 feed. Brian gave her this feed orally. She had a huge vomit

5:00 we went to the store as a family (Costo, Target). I’ve been putting off going to the store forever (never enough time between feeds) This feed is typically a bit smaller, so we decided to forgoe another oral feed and gave her 4 ounces of BD (no vomit)

7:00 Oral feed. Got in 3 ounces of purees and about 1.5 of milk (she started giving me vomit signs so I stopped short)

8:30 Put her to bed, gave her the rest of the oral feed via syringe.

9:00 2 ounces of water via tube

Sit down and “relax” for the “evening”
10: 00 – 11:30 6 ounces of BD via tube (which means getting up 4 times to feed her)

After 11:30, flush her gutbe with water, disconnect tube, clean tube, clean syringes, clean everything else from the day of tubes, syringes, purees, blenders, ice cube trays , etc.

Sunday:

Kaitlyn woke up at 6:30, (this never happens) she must have heard dad leaving for work. She eventually went back to sleep until 10:00! Wow (I gave her 2 ounces of water and 2 ounces of BD while she was sleeping)

11:00 lunch feed: got in about 1 ounce of milk and 3 ounces of purees, then she had a huge pghlemy vomit Gave her 2 ounces of BD

Make purres I’m out off, sort through freezer to find what I need and figure out what I’m out of. Take yesterdays out of ice cube trays, label, make new purées, freeze, etc.

Made Blended Diet: fruit, veggies, milk, yogurt, avocados, (darn, I’m out of avocadoes, go to the store and get some), flax seed, probiotics, olive oil, fish oil, chicken, brown rice/Quina. Clean blender once again.

12:00 gave her 2 oz of water via tube

Nap – gave her reflux medicine during her nap and 2 ounces of water

3:00 oral feed. Vomited huge even though I couldn’t finish all of the feed

5:00 oral feed, this is a smaller feed, huge vomit with just a few bites to go

6:00 Gave her 2 ounces of water via tube

7:00 oral feed. I gave her probably half of what she is supposed to eat and yeah, no vomit.

9:00pm 2 ounces water via tube

Clean BD off the ceiling that I regularly spray when filling syringes.

10:00 start giving 6 ounces BD (get off the counch 4 times)

10:00 Liz drinks a very large glass of wine (or a bottle!) I’m writing this at 11pm, still have 2 ounces to give (of the 6 ounces).

12:00 really need to giver her a “night-cap” of 2 more OZ BD as she is so behind on calories. K really hasn’t gained any weight in 2 months.

Some friends wanted me to bring Kaitlyn out tonight to meet with them….I think they called around 4:45….how in the world am I supposed to leave the house with her feeding schedule? Feeling a bit down and sorry for myself. Ugh.

Well, that’s 2 days of feeding my daughter. And they call mother hood easy? (oh and in-between everything, I’m on the computer dealing with work, and this was a holiday weekend). I really, really don’t know how long I can keep this up. I really, really think I’d be going off the deep end completely if I didn’t have my nanny to help. Does that make me a bad mother? I feel that way sometimes.

Happy Labor Day!

Vomit...

OVERWHELMED.

That’s how I feel. I feel this way all the time. Is this just motherhood I ask? I don’t know. I have been so fortunate to meet so many other people who have reached out to support us, but I sometimes feel lost. I can’t seem to ever get caught up with all that’s on my to-do list. And of course the most important is love and caring of Kaitlyn. You can’t even imagine my personal email in-box.

Here are some updates:

We went on vacation for 10 days the begging part of August. We flew to Buffalo NY and then drove to Lake Chautauqua to visit my in-laws for 10 days. Just preparing for the flight took a whole wee. Between doctor letters for all of Kaitlyn’s feeding supplies, calling the TSA to see what I could take on the plane. Wow.

I dreaded the flight. Kaitlyn is VERY active. We were hoping and praying that we would have an empty seat next to us. We were very lucky for the long portion of the flight, both ways; we got one of the few empty seats on the plane. But not for the short leg between Oakland and Vegas. That “quick” trip was a bit of nightmare, I can’t even think of what it would have been like to hold Kaitlyn for the 4 hour leg across country.

We didn’t feed her much on the plane, for fear of vomit (think back to high-altitude feeding in Tahoe).

Once we were on vacation, we had a wonderful time. Kaitlyn got to spend a lot of time with her Cousin Stella, who is a few months younger than Kaitlyn’s adjusted age. Talk about polar opposite’s Stella has to be one of the biggest eaters I’ve ever met, and Kaitlyn – well you know. Stella would wake up first thing in the morning wanting food, going to be wanting food. She even learned that when we pulled out Kaitlyn’s syringes it meant food.

We had a great time. I even got to go water skiing which I haven’t done for years. It was wonderful to spend time with Brian’s family. I wish we didn’t live so far away. We stayed at: The Chautauqua Institution http://www.ciweb.org They have a summer home there. While there I got to listen to Sandra Day O’connor, Judy Collins, a Symphony, a ballet, other lectures and much much more. It was wonderful to get to see entertainment even with a toddler! What a treat.

Sadly, while we were there, Kaitlyn’s vomiting increased tremendously. Not sure why. The consistency of the food may have been different, so we had to revert to giving her more by tube.

After returning home the vomiting decreased, but she is still vomiting a lot. I look back to my earlier posts, where she went 3 days without vomiting! That seems like a life-time ago. She is vomiting now at least 2x daily. It’s very, very very frustrating.

We also started with Dr Patel working with Chewing last week. Sadly, it wasn’t as successful as the purees have been and it’s also increased the vomiting. Kaitlyn’s gag reflex is very strong. So she either gags and vomits when you put food into her mouth, or she hides it underneath her tongue. Our protocols include putting a small piece of food (a meltable solid) on her molars and “help” her chew by opening and closing her jaw. When she doesn’t chew, you have to go back in her mouth with your finger and scoop up the food and put it back on her back teeth. As poor as she is at chewing, she is VERY good at biting especially with her front teeth. Oh my gosh. I think my finger is permanently injured from her bites.

I now have begun to absolutely DREAD the feeds. We have to do this 5 times a day. Each feed is taking 30 minutes. She cries. Kaitlyn never cries. My pooor nanny is at her wits end for making Kaitlyn cry. She gags, she vomits. It’s really quite horrible.

The food preparation is also tough. She has 7 different daily meal plans. All with pureed food. We try to prepare some of it in advance and freeze it, but just making sure you have everything on hand is hard. Our freezer is full now with zip lock bags of ounce size frozen purees. It’s hard to find the bag with the correct food on it. Every food needs additives. Things like: sour cream, whipping cream, olive oil, maple syrup, flax seed, vitamins, pro-biotics. So you have to find the right food, (if I have it made in advance), defrost it, add all the additives and then after all this work HOPE AND pray that she will keep the food down so you didn’t do it all for nothing.

The bad behavior started back up again (not with purees though), but she was turning her head and swatting me away when trying to get the food in her mouth. After I reported this back to Dr Patel, she decided to stop all chewing and we are sort of back to square one. We still have Kaitlyn “chew” on a chewy tube but not longer have to try to get her to chew the foods.

On my birthday (yes it was earlier this week on the 25^th) I completely lost it. She had just vomited 4 times with ONE feeding session. It was my birthday. I DIDN’T want to be doing this. You know those bibs that are supposed to have lead in them. I’m still using them. They are the only bibs that can catch the vomit easier and wash. I figure, well, she’s not eating the bib (or anything else for that matter)…..If anyone has any other suggestions, I’m certainly open….

OK, the good news is that even with all the vomiting, she continues to eat her purees and drink her milk like a champ. I am so looking into the future, that I have forgotten that 2 months ago she didn’t eat ANYTHING by mouth.

Videos to enjoy!!

These Videos are all hosted on YouTube.com

Bubble Walker
Vomit
Kaitlyn Learns to Eat
Tube Fed Toddler
Fishing
Kaitlyn before feeding therapy

pictures...

Just realized I only have one still feeding picture (the rest are videos). Still working on those. Here are some recent pictures (in no particular order).

Kaitlyn "helping" her mom make really caloric pancakes for Kaitlyn. (but she's vomiting them up - so much for my cooking!) Doesn't' my big girl look all grown up?

My 2nd feeding experience out side the house. See the DVD player, the squeeze bottle (for milk) and Kaitlyn zeroed in on her DVD player....? Still not easy for mom. but she's eating! I treated my house guests (see below) to their first ever pedicures (this is at the salon)

My little sleeping munchkin! You can really tell how blonde she is now.

The 3rd day of feeding therapy. In this picture (from left to right): It was quite a full house on this day - Jennifer (Feeding Therapist Assistant, Dr Patel (Feeding Expert), Kate (Kaitllyn's feeding therapist of 7 months who came to our house to experience the success and meet Dr Patel), Susan, (Kaitlyn's weekly PT Therapist); and our nanny extraordinare!

I've been noticing that when I take off Kaitlyn's glasses she still crosses her eyes. At Yesterday's Eye Doc appointment he said that he wasn't concerned, he explained it more as an optical illusion, that her eyes are still small and you just can't see all the whites. We'll see. They sure "look" crossed in this picture.

A recent visit with Kaitlyn's cousins - this is a picture of DJ, who is Kaitlyn's exact (minus 2 days) Adjusted age.

And cousin Charlotte! Who is a big girl of 3! The majority of Kaitlyn's expansive wardrobe is courtesy of Charlotte (and her mom Whitney).

Look at my happy girl! (with a little boo-boo on her cheek)

The last few days we had out of town visitors. The Kirkabys from Mammoth. These are really good freinds of mine. Kathi is 15 and Amanda is 10. My long-time friend Rita's girls. Kathi was the first baby born of all my friends. I can't believe she is 15 Wow! We had a great time, I gave them a tour of SF (and we got to visit Brian at the firehouse).

Brian got to give the Kirkaby's a ride in the fire engine! The girls (and parents) loved it!

My tour continued to Muir Woods to see the huge redwoods just 10 minutes from my house. This is a National Monument. The tallest trees in the world. It was really nice to take a work break and spend time with my friends (Brian was out of town once again on vacation).

And finally, a little book reading help from Kathi and Amanda and their Dad Brian K.!

A few older pictures from our little hike up in Tahoe over the 4th. Look at my fishing baby!

Smiling for the camera!

Preparing a syringe full of food in Tahoe on 4th of July on the beach

Fishing with dad. Look at that huge fish, dad!

And finally, my best-friend, the Vita-Mix blender. I attribute our success with the Blended Diet (BD) as the first step in reducing vomit and hopefully eventually getting Kaitlyn off her feeding tube!

Amazing News!!!

We’ve actually had some really good news, in fact great news.

I think I feel a bit of “post-trauma stress” or something, as I don’t actually know how to feel…Are you sitting down????

KAITLYN IS EATING!!!!!

Ok, let me back up a bit….

I think I’ve been procrastinating writing this blog entry, for fear of jinxing how well Kaitlyn is EATING!

Feeding Therapy Preparation

Dr. Meeta Patel www.Clinic4Kidz.com came to our house about 6 weeks ago to do an evaluation session with Kaitlyn. (Sorry I never posted a blog update from that session).She watched us feed Kaitlyn (well, attempt to feed Kaitlyn, as usual, all Kaitlyn would do is take her Slim-Jim in her mouth, bite off a piece and then spit it out or gag and vomit on it. Forget getting any spoon fed food in her mouth. And all other finger food ended up on the floor (along with spoon, etc).

We then spent quite some time discussing Kaitlyn’s current feeding schedule (tube feeds, Blenderized diet, volumes times, etc) as well as her entire medical history.

She felt that Kaitlyn would be a really good candidate for her program.

Here are some of the preparation items we had to do after our half-day consultation:

1. Get a new high chair that has shoulder straps…So the super duper high-end high-chair that we owned (a Swan) wasn’t going to work, as there were no straps and it was too low coming up the back.
   

2. Get Kaitlyn accustomed to sitting in a high chair for 30 minutes at every feed and use a timer with an auditory alarm. Use a timer so that if she’s having “bad behavior” she can’t get out until the timer goes off. And she has to be in a good behavior mood in order to remove her. This actually wasn’t much of a problem. She didn’t eat while in the chair, but we could play with toys.
   

3. Even though Kaitlyn turns her head away from the spoon when presented to her, don’t take the spoon away when she turns her head, instead follow her head with the spoon, so she stops associating “turning her head” with our removing the spoon.
   

4. Purchase a lot of items: 1: A magic-bullet blender (remember we already have the best blender on the market a Vita-Mix. But our blender doesn’t handle small quantities very well. 2) new high chair; 3) ice cube trays; 4) small feeding bowls with tops; 4) toys and videos that she’s never seen before and a sealed bin to put them in 5) a lot of specialized food items 6) a portable DVD player 7) I’m sure there were more items, I just can’t remember them now – All in all, I probably spent $500 on all these new items.
   

I think spent the next few weeks dealing with trying to get my insurance to approve Dr Patel’s services. I spent a LOT of time on this. Practically a full-time job….and of course, though out this entire time I do work full-time. This is still pending.

Over the July 4^th holiday, Brian Kaitlyn and I did get to go to Tahoe. This was our first real “vacation” trip together as a family and the first time we’ve all gone to the mountains. Sadly, as beautiful as Tahoe was and amazing that it was to be back there after so long, it wasn’t much of a vacation. Just about as soon as we got there (in fact before we got there on the road), Kaitlyn started vomiting. A LOT. Back to her old self vomiting. Every meal. She was even vomiting up the water. After about 5 days of this I could tell that she was loosing weight and I started really worrying.

I also got a call on the 5^th of July that once again my insurance was denying our request for feeding therapy, as they considered it behavioral? Where were they to watch my daughter vomit up every single meal that we tube fed her. Behavioral.

I lost it. I actually had a break-down. A major break-down… I sobbed and sobbed and couldn’t believe my life. I was so incredibly worried for Kaitlyn’s health at this point. I was afraid we were going to have to take her to the hospital to get fluids in her. We just left some friends with 2 children who were great eaters. The baby (younger than Kaitlyn) went around begging for food. Wow - was I ever jealous. We didn’t have a normal life. This was soo, soo hard. Our car stunk like vomit, I stunk like vomit. My baby was loosing weight that I had fought so hard to get in her in the first place. And on top of everything, the feeding therapy ($1700/day) wasn’t going to be covered. This was ridiculous.

At least as soon as we got back home (and I confirmed that she lost 1 lb) her vomiting subsided back to just one time a day. Yeah. Just once a day. (Isn’t that ironic?)

Monday July 16, 2007 – the day our lives changed …..

It was with excitement and some trepidation that Dr Patel and her assistant Jennifer arrived at 8:00 on Monday morning. This is early for the McCarthy girls as I had to wake Kaitlyn up from a DEEP sleep (remember that I’m always up late, feeding Kaitlyn tube feeds until 1 am or so), so it never much bothered me that she liked to sleep to 9am.

Dr. Patel and her Assistant were there bright and early – this was the start.

Well, we sat Kaitlyn down in her new high-chair and they put on a DVD (the mini-DVD player that she’d never seen before). They videoed the session and the Assistant started “feeding Kaitlyn”….They said “Take a bite” and fed her an empty spoon.. Huge cheering to her opening her mouth for the empty spoon. It was a loud cheering section. Really loud. Clapping, grinning excited waving, etc (we’ve done all this before – the cheering and all, but obviously we didn’t do it correctly). (Kaitlyn actually would open her mouth for an open spoon, which is supposedly a big deal for an oral averse child). They repeated “Take a bite” for 10 times, the cheering every time and then they repeated the whole thing again with water on the spoon. Back to an empty spoon – 10 more times. And then…..a bit of yogurt on the spoon. Kaitlyn responded with her typical behavior, not interested, refusal, they tried a few times, then went back to the empty spoon and water on the spoon.

That was the end of the first feeding session.

A few hours later for her next meal (after putting ½ of her regular tube feed and some water into her belly via gtube). They started again, same structure. DVD playing, set the timer, tell her what was happening, and then empty spoon, water spoon, empty spoon…….yogurt. Lo and behold. She opened her mouth. She took the Bite! I couldn’t believe my eyes. My nanny and I both started crying. It happened again. And again. And again. She ate an entire ounce of yogurt (to a heck of a lot of fanfare and cheering from everyone). She opened her mouth, wider as the feed went on. She stared dead on at the DVD the entire time. (I had also prior tried DVD’s with no success).

That was it. They made the timer ding and she was done with her first official meal – eaten entirely peacefully by mouth! I was in SHOCK. Complete shock.

The 3^rd meal went just like the 2^nd, where Kaitlyn ate an entire ounce of yogurt. A few times she didn’t open her mouth very wide, and they would hold the spoon to her mouth until it was open wide enough. A few times she didn’t open at all, and they would use a finger placed on the side of her mouth (like the rooting reflex) and she would open it. Sometimes she would scrape her teeth on the spoon or not take all the food off the spoon. In all those circumstances she was shown that she had to finish her bit completely (they were very tiny bites on the spoon).

It was going really, really well.

WOW!!!

I really can’t explain how I felt/feel.

I don’t know why it’s so hard to explain. Why it’s been so hard to write this post.

Maybe this is how post-traumatic stress disorder feels. I was in complete shock and utter fear at the same time.

Here are some of my racing thoughts, that really started to hit home after the 3^rd meal:

That was it?

Why couldn’t I have done that?

Why couldn’t her feeding therapist have done that? We went weekly for 7 months…7 MONTHS! And her feeding therapist was really, really good.

WOW!

Crying. Emotional. Disbelief.

I wouldn’t be able to duplicate what they were doing, it was going to back to the way it was once they leave (remember they were at our house for 10 hours a day for 5 full days!)

I’ve spent almost 2 years of my life dealing with a daughter who refused to eat and they got her to eat in 2 feeds?

Why couldn’t I make her eat?

Would she be able to eat enough to stop the tube feeds?

How in the world was I going to be able to get her to eat enough?

I’d have to deal with all this preparation of the special caloric meals and have to make her Blended diet and deal with the tube feeds. Oh gosh, all the work, just what I needed more work to do.
Oh no, this was going to be really, really difficult

What do I tell people when they ask what did the therapists do to make her eat?

I feel like a looser and a failure.

How could I feed her only purees?

Would she be able to handle other foods besides yogurt?

How about milk, will she be able to drink milk that she completely refused.

How is she going to learn to chew solids, when now she gags on any food that enters her mouth?

Was she going to vomit?

Was this all really real?

If I blinked and woke up was this all a dream?

Do you think now she can go to regular school?

Can we have our parents or a regular baby –sitter?

Can we have a normal life?

I felt like I was in a strange time warp or something.

Anyways, you get the point. I really think part of my delay on writing this post was to make sure that she really was going to eat, that we could learn to feed her and that she would eat for us too! And to be honest, it’s still very hard to explain exactly what they did.

Liquids:

On the 3^rd day they decided to introduce liquids to Kaitlyn. Oh boy, I was a nervous wreck again. Although Kaitlyn did like to drink water and juice, the majority of it was spit out and she only took tiny itsy bitsy sips. And whatever she didn’t spit out, she typically chocked and gagged as it went down the wrong way (I’m sure due to her paralyzed vocal chord). Milk, forget it! I tried on occasion and I had complete refusal. Complete.

They used a plastic squeeze bottle with a tube attached and squeezed a very small amount of milk-mixture: whole milk , Carnation Instant Breakfast and Simply Thick (a nectar-like thickening agent) into her mouth. She wasn’t a fan and spit it out (K’s typical behavior). They quickly squirted more in her mouth and this time held her chin closed so she couldn’t spit it out and counted to 3.

They did that just a few times and Kaitlyn quickly learned that she could no longer spit it out. It wasn’t traumatic or anything, it was sort of matter of fact. Then she just went about taking sips of milk and watching her DVD…

Eventually after a few times, she worked her way up to 1.5 ounces of milk. After the milk they went on to the purees.

It’s going amazingly fantastic!

(Now, Kaitlyn is still vomiting, and I’ll get to that in a minute),

But I wanted you to soak up our utter and complete joy!

In just 3 days, we were able to transition Kaitlyn from 100% of her food by feeding tube to only 6 ounces of food at night and water during the day and night. Basically we have completely eliminated any tube food during the day. Eliminated within 3 days!!

Kaitlyn gets water via tube during the day and night and gets a Blenderized Diet meal (of 6 ounces) during the night (over a hour or so). Remember my midnight feeds….no more!!! What - I can go to bed before midnight? I haven’t done that since my girls were born.

I’m crying as I type this. I truly truly thought that my daughter would be going to school with a tube and would be tube fed for years and years to come. It wasn’t just my being negative; I spoke to many other tube fed children’s’ parents. I had prepared myself for years of tube feeding so that I could get over the daily disappointment when ever we tried to feed her and got nowhere.

She now EATS: 1.5 ounce of milk and 3 ounces of purées, for a total of 4.5 ounces at each meal. 5 times a day. It’s VERY structured. Very structured. Dr Patel warned that we had to stick EXACTLY to her instructions. (Believe me we are sticking exactly to the plan) We were given a 10 page instruction manual (treatment notes), menu plans for 3 days, ingredients to up the caloric content of her food, instructions on how to make and freeze the food, progress report sheets to take notes daily (detailed notes).

What did Dr Patel do?

As I said before, I don’t know exactly what she did differently. It was a lot of structure, very serious structure. It was saying the same thing over and over to Kaitlyn to force some behavior. It was serious. If Kaitlyn did anything that wasn’t allowed it wasn’t going to get by. (I still scratch my head trying to figure out exactly WHAT they did differently). This was serious business. If Kaitlyn hand’ opened her mouth on her own, she would have been forced to.

When I tired to force her to open her mouth in the past I got nowhere. Just a lot of tears and shock as she stared up pitifully at her mother trying to be mean to her. Dr Patel really knows children with feeding disorder and I have to thank her immensely for her knowledge. She did indicate that Kaitlyn proved to be very intelligent and probably responded quicker than the majority of her patients. Her Assistant said (as she left the last day) that most children got to where Kaitlyn was the last day of the first week, but just not as quickly. Wow.

10 hours a day for 5 days. It was exhausting. By the 4^th day, we were starting to be trained on how to feed our daughter. We even did role play, feeding the assistant, with her giving us bad-behavior and our instruction on how to react to it. It was nerve-wracking. (OK, this is really crazy that it was nerve wracking learning how to “feed” an 18 month old baby). We (Brian, our nanny and I) all had practice sessions (with the assistant) and then took over towards the end of a feed. The first time I was a nervous wreck. My poor nanny told me she was too during her time. She said her heart was beating out of chest (ok, this really is crazy, but true!) The milk-squeeze bottle… oh my…you were so nervous you’d squeeze too much, that you’d gag her with the straw…oh a million things to be nervous about. It was so scientific the entire time they were there – we were automatically nervous by how “serious” the feeding sessions were.

They left. They left during the last meal of the last day…it was STRANGE. We were on our own. We prepared the meal, started and they left. OMG. Could we really do this? Of course my first day I was going to be totally on my own (no nanny, no Brian)….

I didn’t sleep a wink. Would I be able to duplicate their methods?

Saturday came and went and it went really well. Amazingly well. I can do this….! I can feed my daughter and she can eat by mouth. I can make all the food, do the food prep. I can do this and best of all, Kaitlyn can eat!

It’s been 2.5 weeks now. And it’s going amazingly well. 4 days ago for the first time we ventured out of the house. Brian and I packed her DVD player, containers of her food, the milk /squeeze bottle, etc. and we tried to feed her. It worked! I fed her in her high-chair (as it has shoulder straps). I’m sure we were stared at non-stop, “how horrible are those parents that they allow their child to eat with a DVD on.” (The plan will be to fade out the DVD distraction eventually, but we still have a way to go).

I had friends in town this weekend, and took 2 meals in a row out. One in SF at a restaurant - in a restaurant high-chair. Whenever I’ve been asked if I need a high-chair in the past I laughed. Now this time I said “YES, I need a high-chair”. This may seem like an innocent statement, but to me it says it all! Yes, I need a high-chair, my child eats!!!

Now a bit of bad news. Kaitlyn is still vomiting. When she vomits, the vomits continue to be HUGE (empty her stomach huge). The first time the therapist Jennifer saw a vomit (on day 3) she even commented on how large the vomit was. These aren’t refusal vomits (some children learn to gag and refuse food via vomiting as the parents will stop feeding if the child vomits). We are back to the age old question of why Kaitlyn vomits.

The majority of the vomits have come with a bit of a pattern. Pancakes. Chicken. Both of these seem to be major culprits. The pancakes are think (remember they are purees). It seems to come towards the end. I think the pancakes are very filling in K’s tummy. The chicken tends to clump up a bit after being frozen.

OK, how in the world will we get Kaitlyn to EAT (chew). (It’s ironic isn’t it, that a week ago I was begging and pleading for my child to open her mouth just a bit to get something in) and now I’m already moving on to say, hey, let’s get her onto age-appropriate self-feeding and chewing and drinking her own milk (that’s not sweetened or thickened) and not gag on water. One time there was a bit of peanut butter that must not have been pureed, and Kaitlyn took it out of her mouth with her fingers. She knew this wasn’t a puree and didn’t’ know what to do with it.

Another time a chunk of something was there and she vomited that up (along with everything else I had just fed her).

We were strictly instructed on how to deal with vomits. Basically ignore them. Clean her up enough, point and talk to the DVD as if nothing was happening (her emptying her stomach all over the place, chair, clothes etc), and when she stops, continue feeding her. It’s very important for her NOT to learn the behavior that if she vomits she stops being fed. So amazingly enough, she would open her mouth just like before the vomit started and we finish feeding her the remainder of her meal. (we don’t make up for the lost vomit amount). Side note: a tube mom friend of mine pushes in the just vomited food back into their child’s stomach to make up those calories. It’s an interesting thought. As the food just went in a few minutes before…..It’s just really gross…..But I hate seeing all that hard work (and calories go to waste!)

Insurance Update:

The Tuesday after the feeding therapy week, I got a call from our Doctor’s office with some amazing news………drum roll please. All of my hard work and efforts and energy had paid off….the local medical group realized that they didn’t have anything comparable in-network and they decided to pay for Kaitlyn’s therapy. (and how powerful is it that the therapy worked!!!) I thought initially that they might only pay for on-going therapy, as the intensive week long session (at $1700/day) already took place), but they agreed to pay for the week…

What news!

I’ve researched, fought and fought and got my daughter the care and the services she’s required. I can’t even imagine what other families do when they don’t have the ability to research and fight like I have. It really breaks my heart.

You have to take matters into your own hands. The Doctors don’t always know everything. We were continually told that we should have surgery to surgically wrap the top of her stomach (called a Nisan that is a life-long surgery). I was never ok with this solution. It didn’t solve the problem. It just put a band-aid on it and I didn’t want my daughter to regret one more thing about her life. She is already left with scars on her feet and hands from all the IV’s and prodding she had when she was first born. Her PDA heart surgery scar had grown quite large on her shoulder and left her with a paralyzed vocal chord. When our doctors haven’t known the answers, I was never ok with that. I knew I’d find answers or solutions (even though we still don’t know why Kaitlyn vomits).

I’ve learned so much from other’s I’ve never met. And I’m so happy to give back to others in any way I can. I know I’ve since helped other parents with their children. Whether they are micro preemies or children with feeding disorders. Local and nationally. My Micro preemie support group that I started now has 145 members (If you are a micro preemie parent and want to join see the link to the right under Resources). The youngest preemie ever to survive even belongs to our group. (Amelia, who’s mom I’ve spoken to on the phone)

It helps me to help others. This has been and continues to be the hardest thing I’ve ever had to deal with in my life. I always felt that I was destined to be someone special in life- I could never have imagined that this was what was expected for me. As hard as this has been…. And how much my heart and my arms ache for my daughter Corinne…I have to say that I’ve come to a place of peace and tried to find the positive in what’s happened. I’d take my full-term twins in a heart-beat, but I’m at peace with where I find myself in life now and I’m glad that I can help others in someway.

My last post was very sad and heart-wrenching. I still have those days. I wrote that in the middle of these amazing feeding successes. We aren’t done yet. Kaitlyn still has to learn how to chew and how to drink. We still have a road to travel.

Today Kaitlyn had a follow-up eye appointment (the eye doc was thrilled that she loves her glasses and her ROP is gone). She continues to have multiple therapies a week. But you know what, I feel for the first time since my twins’ were born I really feel that Kaitlyn is going to be ok. That I’m going to be ok. That our family is going to be ok.

Kaitlyn social update:

You know what? Kaitlyn is happy! She’s not just a bit happy, she’s the most amazing happy baby that any parent could ever ask for. In a matter of months, my serious, nervous never social baby has been replaced by the most amazing, smiley happy content girl. She’s amazing. I don’t have another child to compare her to, but I really think that I have been truly blessed with this amazing spirit of a child that is happy and an utter joy to be around.

She never cries. She’s never upset. She’s full of energy and life. She’s happy to be here. There isn’t a day that goes by that I don’t appreciate every single minute that I have with my most amazing daughter…I am utterly joyful.

She’s learned to hum a tune. She’s says “mama” (very quietly) whenever she misses me. She has quite a signing and verbal (quiet) vocabulary. She’s joyful and adventurous and smart. She’s truly a miracle that I feel incredibly blessed to have in my life. (yes, I’m crying again). How can I be so lucky to have such an amazing daughter?

Thank you for your continued support. I’m sorry I haven’t been great with posting lately…But as you probably know when I do post they are worth the wait!

I have videos of her eating…I hope to get them posted soon!

July 26th 2005

Today is 7/26/07. A date that is forever etched in my memory. This day changed my life forever and ever and ever and ever. I would take it back a million times over if I could.

I had an amnio 2 years ago today and found out the sex of my surviving twins. (I had miscarried my triplet just a few weeks prior).

2 years ago today I found out I was going to have 2 twin daughters. Girls! I was on cloud 9.

We were so excited!! After years of infertility, horrible injections, doctor visits, surgeries.. Finally I was going to be a mother. I knew I would be a mother. I always knew. Even with all the problems I had, I just KNEW.

In the evening I realized I started leaking amniotic fluid. The doctor said that was possible.

2 years ago tonight, I went to bed thinking that I was leaking amniotic fluid, but trying to think positive and dreaming of my dream of finally being a mother to two girls.

By the morning, I had a lot of liquid leaking...I think my water may have broken- I was in shock, something was terribly wrong.

I could never have imagined how my life would be altered FOREVER by this date.

I attribute this day to loosing my daughter Corinne.

A choice I made because I was 39 and it was what I was supposed to do changed my life forever.

I spent 10 weeks (3 months) laying in bed and leaking amniotic fluid not knowing if I would ever have children to hold in my arms.

I couldn't work to help pay the mortgage on my newly purchased first home.

My husband had to take care of me 24 hours a day and with his 24 hour normal schedule it threw our life in a tizzy.

I was told over and over to abort my pregnancy because I would never carry this pregnancy.
I moved in to my first house 2 days later and never left my bedroom for 12 weeks.

I flew to Florida (on bedrest - wheelchairs etc) and battled my insurance company (and lost) to try an amnio-patch which didn't work to try to save both my daughters. My husband and I were grief-stricken and stuck in literal "hell" in a horrible motel room in Florida when we discovered the procedure probably didn't work. We both cried and cried.

I flew back home to my bedroom existence.

Life sucked.

My daughters both grew inside me looking healthy, growing and fighting for their lives. Both of them! No one could understand that. They would say, but one is ok, right? One doesn't have ANY fluid, but the other is ok, right? My answer: "They are both in my uterus and without amniotic fluid in one, I risked the chance of horrible infection and pre-term labor for BOTH of my daughters. It was a 2 for one deal. And I wanted both of my daughters. I had already lost my triplet, I couldn't possibly loose an more.

Every week the doctors would say to me, "Wow, you still haven't gotten an infection. you know it's inevitable, you'll never make it. " I told myself I was going to make it to at least 3o weeks.
I started researching NICU's and the outcomes for preemies. It wasn't good.

Every week on Wednesday my mother sent me a huge bouquet of flowers, congratulating me on making it one more week to viability. I was convinced I was going to beat the odds. I believed in positive thinking and I was going to show all the doctors, I was going to give birth to 2 healthy daughters.

I went into labor. I was 23 weeks pregnant. I didn't know it was labor starting. I went to the hospital for monitoring, I was given drugs to stop the labor and sent back home. My babies were not viable I was told.

At just into my 25th week of pregnancy, I again started having labor contractions. My brother Gary was visiting and helping us out. He rushed me to the Hosptial. I was admitted on the spot.

I met a NICU Doctor and we had frank discussion about odds of pre-term deliveries. It was fairly grim.

I was given steroids to help my babies lungs develop. Every doctor in the world came by after hearing my story that my water broke at just under 17 weeks pregnant and I hadn't yet delivered. I was given all kinds of other horrible drugs to try to stop my labor. Mag, Terb, I can't remember them all. The hospital was having a labor strike. at 5 every morning they were chanting and yelling out my window. I wanted to yell, "who cares about your plight...I'm trying to hang on to my babies here....."

My mother Corinne flew up. a week went by. I sent my mother home. I told my husband to go back to work. I was holding these babies in me until I was 30 weeks.

Then on the night of October 3rd the contractions started again. I was a bit over 26 weeks pregnant. This time the contractions were strong. Really strong. I was given a lot of drugs again. My husband was working at the fire department. The labor nurse and I called him 'repeatedly. She said she was going to make sure I didn't deliver. Hours later at 4 am my temperature started spiking. The dreaded sign of "the infection" was there. The doctors had no choice. It was time.

I remember thinking over and over and telling Elizabeth, my labor nurse, that it wasn't time, it was too soon, I wasn't ready, the girls weren't ready. My Doctor was called. She was off, but said she'd come anyways. My delivery was delayed long enough (an extra hour) for my husband to get off work and come to the hospital (no easy feat when you are a fire man, and he had to wake up the Fire Captain and tell him he was leaving immediately).

My husband arrived. I was terrified. We were terrified.

I threw up on the way to the Surgery room. I remember chanting over and over "No, this can't be happening, I was going to make it to 30 weeks." I was introduced to 2 NICU doctors (one I had already met).

Here's a picture of how terrified I was:

Delivery Room


My nurse Elizabeth held my hand as I clenched onto hers. My husband was right there next to me. They cut into me and my first born daughter arrived into the world.

I had always knows that I would have a daughter named after my mother. My mother never knew this - it was the most special gift that I could ever have given her. We hadn't know which daughter to name after our mothers - Brian felt strongly that our first born, whose water had broken needed all the strength she could get, so she was named on the spot "Corinne Margaret" ..after our mothers. Then our 2nd born was delivered a minute later, "Kaitlyn Elizabeth"....

They were both whisked away. No cries. No nothing. My husband left my side to check on our daughters. He took pictures of them being delivered. I am forever grateful to have these pictures, as I really feel like the whole experience of delivery was a bit of a fog for me. I felt in shock. I felt ill and sick and in shock. I'll never forget this moment for the rest of my life. This isn't how it was supposed to be.

There was no joy of birth. There was no cry out of life. There was no tears of joy. There was no holding my babies to my chest. It was just silence. Unknown...It was frightful. I was empty. I felt hollow. I felt my babies were ripped out of me when I knew they weren't ready to come into this world.

3 hours later one of the NICU doctors came to tell us that Corinne just wasn't getting any oxygen. They tried and tried and were doing all they could, but her lungs just weren't mature enough to get any oxygen into her blood stream. I was in complete shock. I had 100% believed that I was going to beat the odds. That I would have my twin daughters to love forever.

That wasn't to be the case.

It was October 4th. 10 weeks after July 26th when my life changed forever. 2 years ago today. Not a great memory. Not a great anniversary.

This wasn't the life I planned.

more feeding issues....

I posted the link to this CNN clip on Feeding Disorders below in my previous post, but I thought it might be really helpful/interesting for those of you who don't understand how a child refuses to eat, (so I'm pointing it out again):

http://www.kennedykrieger.org/video/cnn_feeding.wmv

Keep in mind the child in this clip is 10....That is what my future will look like if I can't get Kaitlyn to eat soon.

..........................

My friend Lisa B is amazing!!!

Not only did Lisa help me edit the previously posted letter (I posted it before her edits, it's much better now). She spent hours on it, and then she proceeded to help even more by writing the following.... Lisa said she teared up writing this, I know I teared up reading it.....

Thank you Lisa from the bottom of my heart.

To Whom It May Concern:

I am writing independently in support of Liz McCarthy’s appeal to have her daughter Kaitlyn’s feeding therapy covered by her insurance through Blue Shield of California (Brown & Toland Medical Group).

I am a physician in San Francisco, California and I am also a mother of two sets of twins. I heard about Liz through the San Francisco Parents of Multiples Club and I was incredibly moved by her story and her twin girls, Kaitlyn and Corinne. Shortly after their birth (and the tragic death of Corinne) I discovered that I was pregnant with another set of twins (two girls). As I prayed that my own girls would be healthy, I prayed for Liz and for Kaitlyn who was born at 26 weeks gestation.

I continued to follow the story of Kaitlyn and her brave battle in the same Neonatal Intensive Care Unit (NICU) where my first set of twins spent their first month of life. Kaitlyn endured far more than my children (and most children) did but she is clearly a fighter and she survived to come home from the hospital months (and many surgeries and procedures) later. I’d never met Liz or her family but their incredible ordeal was compelling to me.

Months later I delivered my girls prematurely at 34 weeks and, quite ironically, my littlest baby M had some of the same (but much less severe) gastrointestinal problems that Kaitlyn has. M was in the NICU, and then had trouble eating and digesting food, and was eventually tube fed.

Liz heard about my struggles, emailed me and phoned me, then spent hours supporting me through the unbelievable challenge of caring for a child who cannot eat. She was unbelievably helpful and seemed to know more about pediatric feeding disorders than most of the physicians I consulted. Liz and I finally met and I understood where Kaitlyn (and Corinne) got their strength.

I would do anything to help Liz and Kaitlyn and I am hoping that this letter will further encourage the powers that be to cover the costs of Kaitlyn’s feeding therapy.

As a physician I am well aware of the indications for and complications of tube feeding. I have seen first-hand what patients endure with repeated surgeries for gastrostomy tubes, nutritional deficiencies, failure to thrive, overwhelming systemic infections, and even death. The costs associated with the care of a tube-fed patient are high and can be astronomical with any
(common) complication. The psychological toll that this takes on the patient and the family is immeasurable.

As a parent I know that having a child with special needs is exhausting, expensive, physically and emotionally draining, and heart-breaking. Kaitlyn has a chance to be a normally eating little girl with the assistance of Dr. Meeta Patel and her Clinic 4 Kidz. Kaitlyn, in my professional and personal opinion, has a severe medical condition and feeding disorder which is amenable to treatment but only with intensive therapy such as Dr. Patel’s group provides.

I have met Dr. Patel and reviewed her procedures and publications and I strongly believe that her services will enable Kaitlyn to eat. I also believe that the relatively small cost of this feeding therapy compared with the costs of long-term (and possibly life-long, if the issue is not addressed soon) tube feeding.

By the grace of God, my daughter Mis now off her feeding tube and is eating orally. She was treated by the same group of therapists and many of the same gastroenterologists who saw Kaitlyn. Fortunately, M medical issues are much less severe than Kaitlyn’s, as Morgan had 8 more weeks in utero. If M was still tube fed I would have her treated by Dr. Patel at the first opportunity (particularly since Dr. Patel has a contract with Kaiser).

I am hopeful that your department will be able to assist Liz and her family in getting this critical treatment for their daughter so that she may have the best start in life. Please feel free to contact me at the addresses or phone number above if I can assist in any way.

Thanking you in advance for your consideration, sincerely,


Lisa Ann S. B, M.D.

Lots and Lots and Lots of Pictures

Kaitlyn has learned that the word smile means "smile!" She even breaks out in a grin now when she hears my camera open! Most of the BIG smile pictures were from when Grandma Corinne visited a few weeks ago. Kaitlyn smiled more in those 3 days than she's smiled in her whole life!

What a difference!

Enjoy....

Here's the link to view all the pictures on Flikr:

Summer 2007 Pictures

This is my life.....

I decided to post one picture in the meantime.....From Lake Tahoe 4th of July Vomit Fest week. (this picture was the first day of the vacation, before she lost 1 lb from vomiting 7-10 times a day for a week).

OK, I had to post one more picture....Look at my beautiful beach babe! She's worth it all!!

If you've been wondering why it's been SOOOO long since I've posted....here is a clue. The letter below is one of MANY I've had to write to TRY to get get Kaitlyn into a specialty feeding therapy program that is PROVEN to help children....and have it be covered by my insurance....

Battling my insurance company (Blue Shield of California) has become a full-time job - ha, don't forget the fact that I do have a full-time job. Why haven't I posted in a while....well, I hope you understand (but I promise I have some amazing pictures and videos to share when I can finally get around to it!)

What is our country coming to? We have some of the best medical teams out there, but when it's not main stream and no one knows of our plight, we are left to fend for ourselves. I feel really sorry for those families who don't have the ability or the time to deal with issues like this. I don't know how many hours of my time this has taken.

I'm about ready to contact the media...Take a look at this CNN link that describes a bit of what my life is like. Why are we (families with children with feeding disorders) not understood?
or helped? http://www.kennedykrieger.org/video/cnn_feeding.wmv

I am so tired of the following questions/comments:

1. Wow, she's still NOT eating.
2. Just try putting sugar, chocolate, fruit, (you name it here) on your finger then she'll taste and want to eat
3. Oh, my child is a picky eater too
4. Oh, my child spit up a lot but grew out of it
5. You mean she doesn't eat anything by mouth, how can that be?
6. She'll grow out of it
7. Just have K watch my child eat, then she'll want to eat
8. Have you tried.....(put in your choice of foods here)


We'll here is the letter that I'll be submitting tomorrow to the Department of Managed Health Care, Independent Medical Review, (the governmental agency that oversees HMO's).

Now, don't get me wrong here, I have to honestly say that I have been extremely, extremely please with our insurance up to this point. I know that my daughter has had top notch medical care from the moment she was born (I can't say that my AMNIO was top notch)....and I'm sure her hospital bill was well over $1,000,000. Why in the world are they quivering about $15,000???? Especially when in the long term that $15K would likely save them more than that in all of the medial supplies, formula and nursing we would no longer need them to pay for??

Maybe I should start a foundation to get children into feeding much needed feeding therapy programs like this...(my daughter being the first beneficiary).

It makes no sense!!!!!

(some details have been omitted to protect privacy)

July 13, 2007

Department of Managed Health Care
HMO Help Center
IMR Application

RE: Kaitlyn McCarthy

Dear IMR Team:

I am writing to ask you for much needed help in facilitating approving Pediatric Feeding Disorder Therapy coverage for my daughter, Kaitlyn McCarthy.

My daughter (a micro preemie, surviving twin born at 26w6d gestation) gets all of her nutrition by feeding tube (g-tube) and has a severe Pediatric Feeding Disorder. In this letter I will only briefly go into her medical history, as this is all attached to this fax.

My daughter was released from the NICU at 1 month adjusted with an NG tube. G-tube was surgically inserted 3/06. She has spent her entire life with multiple emesis’ daily (up to 20x a day). She has a paralyzed vocal chord from her PDA ligation surgery while inpatient the NICU. She has been fed 100% via feeding tube since release from the NICU. She currently has severe oral aversions, refuses to take 99.99% of any food orally, doesn’t know how to swallow food or know what to do with it, and often vomits/gags when food is in her mouth. We have tried weekly feeding therapy for 7 months by Kate Hemlock (paid for not by BS but my the Golden Gate Regional Center (a federal program for children at risk of disabilities).

Here is a description of Pediatric Feeding Disorder:

Feeding Disorders
A pediatric feeding disorder is diagnosed when children fail to consume an adequate quantity or quality of solids or liquids to sustain growth. Feeding disorders are fairly common in infants and toddlers, with approximately 25 percent to 40 percent of these children experiencing some difficulties with feeding. The incidence of severe feeding problems has been reported to be even greater—as high as 80 percent—in children with severe to profound mental retardation. In fact, the number of children affected by feeding disorders is growing because medical advances have reduced the mortality rate of children born prematurely, a population especially at risk. Feeding disorders typically develop for several reasons, including medical conditions (food allergies), anatomical or structural abnormalities (defects of the palate), and behavioral mismanagement (e.g., early or delayed introduction of solid foods, excessive parental anxiety during meals or delivery of inappropriate consequences for food refusal). In most cases, no single factor accounts for a child’s feeding difficulties. Rather, several factors interact to produce them.Awareness of risk factors and clinical presentations of feeding disorders, combined with appropriate referrals at an early age, will produce the best outcomes for children and their families.

We have requested Intensive Pediatric Feeding Therapy from Dr. M Patel, (http://www.clinic4kidz.com/). Blue Shield (BS) and our medical group, Brown & Toland (B&T) have continued to deny all requests for this therapy. Dr Patel offers a very specific therapy that very few national providers offer. She has a long-track record and has published many medical articles on the subject. (I have not included a copy of her resume to this fax, as it over 15 pages long.) If you would like a copy, either contact Dr. Patel directly, or let me know and I can forward it to you.

If you are not familiar with Pediatric Feeding Disorders (as most of the medical and general public don’t understand that eating orally is not “instinctual”, here is a CNN news link that helps explain Feeding Disorders: http://www.kennedykrieger.org/video/cnn_feeding.wmv

The only other option besides Dr Patel is a multiple moth-long, more expensive in-patient feeding therapy program at Kennedy-Krieger (KK) in Baltimore http://www.kennedykrieger.org/kki_cp.jsp?pid=1574 . Dr Patel received her training at KK. Dr Patel’s program is unique as she works in the home, the natural environment where the child will be fed there day to day meals, whereas in the KK program, after the child comes home, the parents still have to learn how to feed the child.

They wrote in their denial letter to me: “The principal reason is that your medical group can provide appropriate services for your medical condition with in-network providers and facilities.” The secondary reason is due to questionable medical necessity. Per BS and B&T request, I was able to schedule an urgent appointment with CPMC (our in-network provider). They concurred with the rest of Kaitlyn’s medical team that they (CPMC) cannot provide the needed services and that only a provider such as Dr Patel trained in Pediatric Feeding Disorders can provide these intensive services.

This newest evaluation was sent to B&T and they are still refusing to cover Dr Patel’s services for my daughter. I do not have a new denial letter (this was told me verbally by B&T case worker on 7/5/07), as they said the original denial letter still stands (dated 5/20/07). B&T current stand is that my daughter’s disorder is “behavioral” so it is not a covered medical benefit. (Note that Kaitlyn’s entire medical team states that her disorder is medical in nature).

Just last week over the 4th of July holiday, we visited Lake Tahoe for our first vacation since my daughters’ were born - Kaitlyn was back up to vomiting 6 times a day. How can this be behavioral I ask? As quoted from the description of a Pediatric Feeding Disorder: “Awareness of risk factors and clinical presentations of feeding disorders, combined with appropriate referrals at an early age, will produce the best outcomes for children and their families.”

My BS EOC Benefit Plan booklet states: “When no Plan Provider is available to perform the needed service, the Personal Physician will refer you to a non-Plan Provider after obtaining authorization.”

All of the letter’s from Kaitlyn’s medical team concur that there are severe long-term consequences from delay of treatment for her feeding disorders:

From CPMC feeding clinic, “Developmentally there are windows of time where children are more open to being shaped for weaning and it’s important to take advantage of these “windows.” It is therefore recommended that Kaitlyn receive intensive daily in-home therapy that can provide medical management of Kaitlyn’s reflux while developing effective treatment methods the parents can incorporate into their daily routine.”

From her PCP, : “She has failed to progress despite all the wisdom and experience that has been tapped by…”numerous Pediatric GI, who are on the B&T panel.” It is medically necessary for Kaitlyn to try the approach to feeding aversion offered by Dr Meeta Patel.”

From her Feeding Therapist after weekly visits over 7 months: “Due to the developmental window that is very important for children to acclimate the orally sensory system to accepting different types of foods, and textures, it is very important that Kaitlyn begin to accept food consistently..

From one of her GI Doctors: “Given her limited progress despite such intensive therapy to date, I feel that with her underlying medical conditions she requires a higher level of intervention. …her feeding difficulties will only worsen with time if not corrected at an early age and she will remain G-tube dependent for years to come. Therefore I would like to pursue any and all avenues to achieve our goal of weaning Kaitlyn from her G-tube feeds.”

The Medical profession is very quick to insist that children with feeding issues go under the knife to have feeding tubes inserted. Although these tubes allow the child to thrive, they in turn cause significant long-term feeding issues, as the child never learns to eat orally or to feel hunger.

I feel my insurance is denying my case partially because they know once they approve Dr Patel for my daughter; they will have to approve her services for other tube-fed children that are in a similar situation.

As a side-note, Dr Patel is currently under contract with Kaiser, as they determined that they do not have an in-network service that offers the same therapy as Dr Patel’s program. I know for a fact that Kaiser has approved other patients to see (with success) Dr Patel’s program.

In addition to loosing a child and all of Kaitlyn’s prematurity-related medical issues, therapy and doctor visits and the strain it’s put on my family, a 100% tube fed child is extremely difficult situation to manage. I cannot main-stream my child in any child-care providers or schools. I cannot have family members give us a break. My husband and I never get a break from her care. We are a two income family. Needless to say, the stress of having a tube-fed, vomiting child is indescribable.

Putting aside the fact that having my daughter eat orally like a normal child would be a life-changing event for my family; my insurance currently covers feeding tube supplies, formula and nursing expenses. If we can get my daughter off the feeding tube, the long-term savings for BS would be substantial.

My daughter is due to start Dr Patel’s intensive feeding therapy program on 7/16/07. As indicated above from Kaitlyn’s medical team, the longer her treatment is delayed the worse her situation will likely become. I too feel it would be detrimental to delay this treatment.

Thank you for your review of this issue. I can’t tell you how many endless hours I have spent on it, as you can tell by this comprehensive packet of information I am attaching.

Feel free to contact Dr Patel, any of Kaitlyn’s medical team, her case worker at B&T or myself if you have any further questions. I look forward to your assistance in this urgent matter.

Regards,

Liz McCarthy
Mother to Kaitlyn McCarthy

Attachments:

IMR Application
This cover letter dated 7/13/07
Kaitlyn McCarthy Discharge Summary (NICU)
List of current Physicians
Letter, 5/10/07 to Brown & Toland from Liz McCarthy
Brown & Toland Service Denial – 5/20/07
Letter, 5/23/07 to Brown & Toland after first denial from Liz McCarthy
Letter, 5/24/07 from Dr. R, GI, UCSF
Letter, 5/24/07 from Dr D, PCP (I don’t’ have a copy of Dr D's original request for this service)
Consultation Note – 9/14/05 from K, Speech Pathologist
Progress Note – 5/25/07 - from K, Speech Pathologist
CPMC – NICU Developmental Evaluation 5/30/07
Blue Shield, 5/31/07 notice of request for appeal
Blue Shield , 6/8/07 - notice of denial
Evaluation Note – 6/26/07 – CPMC Feeding Clinic
Clinic4Kidz Feeding Disorders Program Overview
Clinic4Kidz Treatment Fees
Copy of email to Dr S, CMO of Blue Shield
Dr Patel CV is NOT attached. Please contact Dr Patel directly for a copy of her CV

Well, gotta go, it's midnight, I have to get up from the computer now to go fill a 60 cc syringe and push it in to my daughter's belly..... and then do it 2 more times, as I got behind her night-time feed sitting her for the last few hours writing this letter.

Ah yes, it's my life......

super busy

Sorry for the long time with no posts, I've been SWAMPED at work..I promise to write more soon. Here is Kaitlyn and dad out in the outfield at AT&T Park (San Francisco Giants). Our good friend Anne got us tickets for the family picnic day! What fun!

It's the "spring" season for real estate, so I've been very busy (a good thing) I've also been battling with my insurance company to try to get Kaitlyn's feeding therapy covered that starts next month.

Kaitlyn is still vomiting (about 1x every 2 days), she's very, very active and doesn't like to sit still for very long, and is still refusing to eat.

Kaitlyn is ticklish!

Katilyn is Talking Video