Wednesday, November 19, 2008
It's a HUGE day at the McCarthys
Kaitlyn ended up giving her cold to both Brian and I, but I got it bad, still have it a week later. My voice is shot and I can hardly sleep with all the pghlem. Kaitlyn got so bad I took her to the doctor last Friday and she had an ear infection in one ear as well as a sinus infection. SO back on anti-biotics she went.
She was a bit of a night-mare all weekend, whiny, not my sweet Kaitlyn, I kept forgetting that she was probably just not feeling well, so it made things sort of tough. By monday, however, she started feeling a lot better, but then the runs started. This antibiotic she's on makes her poo green and explosive diarrhea (poor baby).
Today, while Kaitlyn was at the park with our nanny, she started complaining that her tubey-tube hurt. She had said it to me too the day before. I think the anti-biotcs are messing with her entire intestinal/stomach area. She also suddenly broke out in a horrible yeast/diaper rash. It came quickly, even on her thighs, poor baby.
I made the decision on the spot to take out her tube. It was time to replace it again. It just didn't make sense to me to replace it, knowing that we weren't using it any more and that I had no intention of using it again.
The docs weren't on board with it coming out, as they are concerned about her not gaining weight. Well, I've done the whole gtube thing on my own, tackling everything from what we feed Kaitlyn to finding her therapy. Why should this be any different? I listened to my gut and it said no problem. Get rid of the tube! Maybe that 5cc balloon in her tummy (that holds the mic-key button in place) is making the pghlem and taking up valuable space anyway.
My feeling is this: she eats quite well (when she wants to and is hungry), she isn't vomiting any longer, there is nothing physically wrong with her, so why do we need a feeding tube?
So out it came! She was crying (due to the diaper rash, the tube hurting her and needing a nap). I had imagined in my head what the momentous day/celebration would be and this really wasn't the way I had planned.
But the tube is out! It seems so anti-climatic! It wasn't that longer that I was "complaining" that we'd never get Kaitlyn to eat or stop vomiting. I had laughingly imagined her going to college with her feeding tube, that's how impossible of a feat it seemed to me.
I wanted this to be a big deal! I wanted fanfare and hoopla - mainly for all the crap I had to deal with for the past 3 years. My pain and suffering. Kaitlyn insufferable vomiting. All the crap! so much crap - it's hard to remember it in some ways, (which is CRAZY). Instead it was tears from Kaitlyn, I pulled the water out of the balloon with a syringe, sopped up a bit of food around the site, slapped on some gauze, tape and that was that!
Now we have to wait a month to see if it will close on it's own. I've been told that about 50% of them close on their own, and 50% need surgery to close. Hopefully we'll be the former.
Let this be hope for all my fellow micro preemie moms who have kids with gtubes. All my other friends kids with feeding tubes. it can happen! Even when nothing is improving and you are stuck in the same old grind of pushing in food and slopping up vomit. You CAN get your kids to eat!
Don't be complacent if the docs don't know what to do. Research! Ask a lot of questions! Be patient. Work hard. And eventually you too can be rid of tubey-tube!
Thursday, February 21, 2008
Finally an update

The little peanut spent a lot of time with his/her hands near his/her mouth. Now if you recall my u/s pictures from our prom princess (our angel Corinne) whose water had broken (prom), you'll appreciate all that beautiful amniotic fluid like I did!
The 4D picture! Wow, pretty amazing isn't it? Looks like they are a thumb sucker! Look at those beautiful fingers and toes!
We saw Perinatologist Dr S, who was the first Doctor after my water broke who put it all bluntly what our outcome options were. He remembered that we had flown to Florida to try an amniopatch with Dr Quintero (which sadly didn't work). He wanted to know how Kaitlyn was doing and whether she had CP or not (which is so common for Micro preemies. We said that we were very, very fortunate that her motor skills were quite good.
I also saw my OB for the first time (this pregnancy) as I'm officially released from my RE (reproductive Endocrinologist) and I'm done with all fertility meds! Yeah!!!! That's a huge relief. She went over all the pregnancy do's and don'ts again with us....This is really happening. I'm GOING to carry this little peanut to term (well, it won't be 40 weeks, as I'll have to have a c-section, and it will be scheduled either 1 week early or 4 weeks early due to my previous incisions). So although my due date is 8/27 (and my birthday is 8/25) I think this little one may be a Leo (birth dates before 8/23) instead of a Virgo like me.
Update on Kaitlyn:
Well, good news to report on many fronts:
Kaitlyn hasn't gotten sick one single time (knock on wood) since just before Christmas! Wow! She (nor Brian) never caught my flu-bug. Her weight is doing great, I think she might be nearing 25 pounds. That's the quickest she's every gained weight. We are considering cutting back on some of her night feeds (she still gets 8 ounces of BD (Blended Diet) via gtube at night).
She's eating, really really well! She's advanced onto some regular toddler food. Now, this is strange for me to type, acknowledge and even truly believe. My daughter didn't eat ANYTHING by mouth last July. Now she is eating: goldfish crackers and LOVES them! Melba toast, Beef, pork, stew, mac-n-cheese, rice, french fries, oatmeal, spicy things, yesterday she ate a WHOLE tofu dog (not mashed) and dipped it in ketchup. Most oral averse kiddos I know of have a sever adversity to any different kinds of foods, that doesn't' seem to be the case with Kaitlyn, she loves trying new foods, it's just a matter of chewing them that's the issue.
Now, we still have a way to go and we still have a lot of work. Most of her nutrition we still have to fork-mash to a puree consistency. She still chews primarily with her front teeth, she still gags and still vomits about 1x a day. She can't handle a regular apple or orange (she'll just put it to her mouth briefly then hold on to it), but loves dried apple chips and fruit strips.
We've completely discontinued her watching the DVD, and now entertain her with my singing (not very good) or music on in the background. We play counting games, letter games etc. as the meals still can take quite a while.
Although she's still not much of a milk fan, we've tried some chocolate milk and have almost gotten rid of the straw-squeeze bottle we've had to use to get the milk into her mouth. We now are working with an open cup, but we have to hold it to her and pour into her mouth (but she will usually open her mouth). I often have to bribe and say 5 more sips, then you can have some more mac-n-cheese.
She is just starting to feed herself (which a toddler by age 2yrs 4 months) would def. be doing on their own. If she likes the food she's quite interested. Otherwise, we still feed her as a baby would be fed. I took a video last night of her eating rice on her own. I stopped the video and didn't get her refusal that happened a bit later. You'll be AMAZED at the video (but keep in mind a few minutes later I had to hold her hands down as she was batting me and the milk glass away). We can never let her get her way when it comes to refusing. She can't learn that she can get away with it. That's the primary deal with the Behavioral Therapy.
On that note, Kaitlyn's Feeding therapist (Dr Patel) has been on vacation, and we aren't due to see her again until March. I really, really am thinking that we may not need any more visits past this one. WOWEEEEEE!!! I'm not sure what else she can do to help us at t his point. Kaitlyn just has to continue to learn that she needs to chew on her back teeth. Hard to say if it's behavioral or not. Maybe so, her gag reflux is so strong, it's become a very ingrained habit.
Language and talking! Wow. Her language has absolutely taken off. She's now talking in sentences. We started with making her say: "I want...." instead of just "up" when she wants up, or open, now we make her say "I want open peeze". She learned that in just a few days. Last night was the lunar eclipse. Kaitlyn LOVES the moon and I explained that the moon was hiding and it was an eclipse, she picked it up and said, "moon hiding, eclipse" and kept repeating eclipse all night. Dad took her to the fire station, and now she says, when asked where dad is, "firehouse, down-the-pole", "firetruck" and "football" (as they were watching football when she was there).
She's into labelling EVERYTHING. She will repeat something over and over until we acknowledge her. she'll say, red light, red light red light, until we say, "yes, that's a red light" She knows her entire alphabet, even singing the alphabet song, counting in English and Spanish, and understands our Nanny's instructions in Spanish completely.
With her paralyzed vocal chord, she continues to be very quiet, but we can hear different tones of her voice. Sometimes her "voice" really is made using her chords, the other time it's more of a whisper and harder to hear.
She has the occasional 2 year old toddler tantrum (mainly if mom leaves) or I take her tooth-brush away from her, but she generally is a really, really good little girl.
We got new glasses awhile ago (forgot to mention that) as they were too big and she didn't wear them. Well her square glasses are now too small and she's in her other glasses all the time. No more chord behind her head, like a big girl!
Developmentally: Kaitlyn still is having sensory issues. She is still very hyper, and has a hard time sitting still. When we go to Easter Seals play group, she's the only one that doesn't sit during music time (and she loves music). She's getting therapy 4x a week still, which is hard on mom:
1. Speech/oral motor skills, 2. Easter Seals Play group, 3. OT (for her sensory issues) 4. Easter Seals Teacher
We have an eye doctor next week. She' still getting her monthly synagis shots against RSV. She's now really starting to hate going to the doctor (it never used to bother her before) as she knows she's getting a shot. I know 3 year hold micro preemies who have gotten very ill with RSV so as much as I hate that she's getting the shots, we are very, very fortunate that her insurance is still covering it (as it's over $2K a shot every month through April).
My mom was in town for 4 days and then Brian's parents were in town for 8. Grandmas and Grandpas loved seeing Kaitlyn, and Kaitlyn had so much fun. She says things like "grandma suitcase, open presents". We had a lot of fun, when my mom overlapped, we all went to the wine-country and went wine tasting (well I didn't taste, forgot to take any pictures) and Kaitlyn stayed home with our nanny, we went to the beach, we hiked to the top of Angel Island after taking a ferry there. Lots of activities (little time to update my blog).
Again, sorry for the long delay in this post, thank you again for all your continued support (if you are still reading this).
Friday, January 04, 2008
Mac & Cheese
This is an exciting movie, but keep in mind that she is NOT chewing what-s0-ever. It was the first time she ate anything besides a puree and asked for more! That's exciting. I also didn't get the huge vomit a few minutes afterwards when we switched back to peas, and just the little pea skin made her gag and loose everything that she just ate.
But, none-the-less this is a very exciting video, sorry about my dorky editing.
Tuesday, October 30, 2007
Learning to Chew Lumpy Purees
Thursday, July 12, 2007
This is my life.....


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......