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!