Where have I been?!?!

I'm sorry I've been so absent around here lately. To be honest, I've just been completely run-down and not doing so great. I've been battling this weird GI issue on and off for about 8 months and it has finally come to head over the last month. My energy, motivation, and passion has waned with my health.


In the midst of all of this, Ava had her nutritional panel which showed a dangerously low iron level...slight chaos has ensued.


Then, to top it all off, Mike ended up being REALLY sick...I mean REALLY sick...over Christmas. So I cancelled the festivities. Within a few days, I got it too. Fever (that has finally seemed to subside after 5 days), chills, aches, skin pain, and sleepless nights due to hours upon hours of coughing, and just exhaustion...


So I still have alot to say, alot to tell, alot to share. I've just been trying to get through each day without the medics having to drag my limp and lifeless body up the stairs (oh how I loathe a two-story house sometimes!)


Thankfully, my parents took Zoe home with them on Monday. I was pretty much in bed from Sunday afternoon until today. Mike spent half a day on Monday working and came home completely wiped out. So we've both been able to just hang out and rest.


Sweet little Ava just hung out and watched movies in bed with me. We threw a tube feeding her direction now and then (not easy when you're shivering and riddled with a fever) and changed a diaper here and there, but she's pretty low maintenance. She just likes to be with us.


On Tuesday, I loaded up on Tylenol to get my fever down and then had to go get some brewer's yeast for Ava's formula. I also decided to stop by the park so Ava could run around and let out some energy. I told her that I was sick and she needed to play while Mommy sat on the bench. "OK" she muttered as she ran off.


So I sat there with Apollo, feeling so-so and thinking, "Great, maybe this is passing and I'm going to be fine." Then...the shivering started, the body pain started. By the time we got to the car, my teeth were chattering. 


We got home and I had a hard time walking into the house I was shivering so hard. I could barely keep the thermometer in my mouth I was chattering so bad. Sure enough, my temp was climbing.


So I played this cat and mouse game with Tylenol and temperatures for 5 days. I seem to be on the downhill run of this thing. I just took some codeine in hopes of having a coughless night tonight (crossing fingers) and thinking that tomorrow I'm going to feel better.


I will resume my blog activities shortly. I want to add an e-mail subscription option and some pictures and videos. I will also tell you more about Ava's vitamin levels and what's been going on with that as well as my GI issues.


In the meantime...enjoy!

Frosting...if only she'd eat it!

Love Disneyland at Christmas!

That haggard/exhausted/disheveled look is the new chic for mommys everywhere.

DANG...I...LOOK...GOOD!!!!

Disneyland ferris wheel in mid-December...IN SUN DRESSES!

90 degrees at Disneyland...too hot and crowded...let's go to the pool.

CUPCAKES! Gluten-free of course.

Just being silly.

Community

It's really strange lately. I feel like this small community of tubie moms are coming together and really trying to help each other out. Lots of blogs have started, awareness sites have been launched, and I'm starting to see some familiar names pop-up on various sites. We're a small group, but we're strong! 


Most of these families have stories that far exceed ours in severity. Many of these children have life-long disabilities and conditions that require, literally, around the clock constant care. I'm also finding that most of these tubie kids have tubes as a result of their primary condition, with the tubes put in as a result of not being ABLE to eat.


But I think what strikes me the most is how STRONG these moms are. I like to think I'm strong and determined, but I'm not sure I would be in some of these more dire situations. 


I CAN say that all of us moms are tired and weary. We trudge on knowing that tomorrow probably isn't going to be much better or easier...in fact, for many of us, we know tomorrow might actually be worse. We go to bed exhausted knowing that it will all still be there for us to deal with in the morning. For some moms (I'm thankfully not in this group), the care continues on hour after hour throughout the night as well. Year after year passes and the intensive care continues.


Every parent with a special needs child goes through what I like to call "mental gymnastics". It is a constant balancing act that our brains go through on a daily basis. Each mom's dialog is different. Mine goes something like this:


If I feed Ava 8 ounces now, I can do the next feeding at 1pm, but wait...that will interfere with nap, so...I could do a half feeding before nap and half after nap, but then I'm too close to the mid-afternoon feeding which messes up the before bed feeding and I can't put her down on a full stomach, wait...do I even have enough formula to make it through today? gotta make more, do I have enough fat in this blend? did I put in the multi-vitamin yesterday? I need another Omega-3 source, now an orange veggie, a green veggie, OK...more green veggies, is that too much spinach? wait...no more Vitamin A, skip the cod liver oil, did I oil my syringe, that tube doesn't look very clean, do I have enough formula while we're out? should I feed her now or wait until we get home? OK...I'll do it now so it can settle a little before nap...OH NO! please don't throw-up! 


For most parents, life eases-up on you as your children grow older. We raise them to be independent productive members of society. We know that they will leave one day and have a life beyond us. Get married, have families, excel in careers. But for some families, this will not be their reality. 


As far as Ava is concerned...we don't have any reason to believe she won't be in the "independent productive member of society" group. However, there is always the constant nagging feeling from not knowing what's "wrong" with her. Does she have some sort of a condition that is going to amplify? Will it be something that will have life-long consequences? We hope that her hunger drive will "wake-up" one day and we can all have a good laugh and some fun jokes about the "tubie years", but I'm not sure I really believe that will happen. I think that something is truly wrong with her, but because she is so young, I'm not sure we've seen the full impact of what it might be. 


At this point, only time will tell how this saga is going to turn out. In the meantime, we love this amazing little kid and it's hard to imagine her being "normal". 


It is what it is...and it's OK. 

The evolution of Ava's diet...

(If you haven't read "I've dealt with enough vomit to last a lifetime", please do...this is the continuation of that story.)


So Mike and I refused a radical surgery for Ava's vomiting and the doctor walked out of the room saying, "I can no longer help you." We were truly on our own. Ava was 8 months old, she just had a feeding tube placed, she couldn't hold any formula down, and we were sent home with NO medical support.


I'm sure that I cried on the way home, I'm sure I was angry, I KNOW I felt abandoned and completely alone. The medical community had "fired" us for not blindly following their "Godly" opinions. This was it. Ava was going to die a long slow death at home. 


Every hospital would've tried to convince us to do a fundoplication. All the hospitals around us worked with the same group of doctors. They all knew each other and actively communicated. There was one independent pediatric GI in our area who wasn't affiliated with the major children's hospitals in the area. When Ava was younger, we tried to get into her and she refused to see us. She had heard about our case and felt it was too complicated and didn't want to deal with it. We had nowhere to turn. 


I guess we could always go to the ER and they would stabilize her if we got into some sort of crisis, but we had no medical team helping us. Stabilizing her is one thing, getting some sort of resolution is another. We need to fix this vomiting issue. She can't survive if she can't keep anything down. How many times can we keep running to the ER to be stabilized? What is that degree of malnutrition going to do to her brain?


So Mike came up with a brilliant idea...let's put REAL food in her tube! Mike believed all along that the formula was the culprit. He wasn't sure if she had a dairy intolerance or if it was just plain old formula intolerance. Either way, he frequently told the doctors that we needed to stop using formula and start using real food.


"But formula is COMPLETE and BALANCED nutrition...you can't use real food," the doctors would say.
"But she keeps throwing it up!" Mike would respond.
"But it's COMPLETE and BALANCED!" the brilliant doctors would insist.
"But she's not keeping any of it down!" Mike would argue.
"Well...after she throws-up, put more in!" said the doctors.


It just didn't make sense...I don't think it made sense to the doctors either, but that's what they were taught. If you're not using breast milk, your only option is formula. If you don't tolerate a certain formula, try another one. Don't tolerate that one either? Try another one. How about one that's already digested? No? Try another brand! Hundreds and hundreds of dollars later, and the child still is vomiting. And if you're on a feeding tube, your only option is a man-made canned formula with water being the only natural ingredient.


We'd had it! Mike decided to give Ava baby food peas through her tube. I think we watered it down with a little water to make sure it went through smoothly.


And...


It stayed down!


We tried sweet potatoes at the next meal, and...


It stayed down!


We tried a little bit of formula at the next feeding, and...


It came up!


This wasn't rocket science...we had cold-hard PROOF! She doesn't tolerate the man-made garbage that the medical community keeps passing off as complete nutrition. 


We decided that very day to take her off of formula altogether. She was 8 months old. We also started using cow and goat milk as our base for her feedings. 


Shortly after seeing the results, we sat down after the girls went to bed. I gathered all of my books together and designed her formula. I figured out each nutrient she needed and the amount she needed. From there, I found an appropriate food to fill as many nutrients as possible. The top contenders were:


avocados
blackstrap molasses
brewers yeast
lentils


Those seemed to be the real powerhouses as far as nutrition. From there, I just kept filling in foods and adjusting quantities until all of the nutrients were met. By the time I was done, it was 20 ingredients long and included things like sardines and goat milk as well as various fruits, veggies, and nuts.


I would make this new formula every 2 days, and it would take me about an hour. I didn't have a good blender, so I would use my food processor and make it in batches. I would then strain everything and combine it all in the end. I tried making bigger batches and freezing it, but the thawed formula just wasn't that good. It changed the texture and I'm sure the freeze/thaw process altered the nutrient profile as well.


The first full day of this formula resulted in NO vomiting...not even a little spitting up. During the first few days of starting the real food formula, Ava began to crawl. Within a week, she started sprouting her teeth. She became vibrant and alive. She started sleeping less and became more interested in life around her. And she slowly started gaining weight.


We'd done it!!!!! Completely against EVERYTHING the doctors told us to do. She was living proof. We saved her life! The formula was killing her and the doctors insisted we keep shoving the poison down her tube! Had we blindly followed them, Ava would be severely impaired...or dead. We were able to supply INSANELY good nutrition through all of the critical brain growth and development. 


She is still on a whole food diet. It has been tweaked and modified a lot over the last 18 months. I've worked to make it a little easier for me (selfish...maybe...). I make about 36 hours worth of feedings in about 10-15 minutes. I have better equipment and have kind of perfected my formula making technique over time. I have learned what foods blend easily and what doesn't. I've figured out her tolerances and what doesn't sit in her stomach well. I know how fast I can feed her and how much volume she can handle. 


Now that she's older, it's more of a base formula with about 4-5 ingredients and then a "what do I have in the refrigerator" added in. Her diet is more balanced over a weeks time instead of at every meal. I loosened my obsession with making every meal PERFECT, and just included good healthy foods without counting every calorie or nutrient. As long as I throw in some high calorie foods with every blend, I don't worry too much about it.


We continue to watch her thrive, grow, and develop. She's insanely smart! The kind of smart where you sleep with one eye open. She's a normal toddler, only she eats WAY better than any toddler I know. She's active and happy, loves life, and seems to appreciate   the little things. It's as if she knows that according to the laws of nature, she shouldn't be alive.


We still do all of this without the approval of her doctors...although they can't deny how great she's doing. It's no matter to us, we KNOW we're doing the right thing...Ava is our proof!




This is how much Ava ate of her breakfast...I think it was 1/2 a bite.

When Ava turned 1

Every year I make a video for the girls. It's just my thing. I think it's a great way to capture the highlights of the previous year and a touching tribute to how much I love them. Each girl has one that I make on their birthday. I include a few pictures of them together, but the prime focus in each video is the birthday girl.

I cry when I watch all the videos, but Ava's first video is a little harder for me to bear. Some of the pictures are a bit harder to see and the memories aren't all warm and fuzzy. I don't miss a lot of that first year. But the parts I miss...I REALLY miss. It just seems to pass WAY too fast.

Enjoy Ava's first year:

Today is a better day...

I'm sitting here on a dark and gloomy Friday watching darling Ava put stickers all over my hands and computer. We're supposed to have alot of rain this weekend. The news will have "Stormwatch 2010!" on all the stations and the streets will be all but shut down. I believe that it is supposed to be 1/2 an inch over about 36 hours. Seriously...that's ALOT of rain for us!!!


So what does a typical Southern Californian do when faced with the "torrential" downpour that is predicted for this weekend? We batten down the hatches, stay inside, and endlessly complain about the weather. We stock-up on groceries to ride out the next 36 hours and hope that our food rations last. We gas up the car and have it ready in case we have to flee to higher ground. 


We look at the forecasts once a month and just assume that the weather will stay the same. Even if we happen to catch the weather report, we never believe what we see if it's anything other than "sunny and breezy". But the worst part of the rain for me is that I just had a REALLY good car wash a few days ago and it is destined to be ruined by the horrifying rain.


So Ava and I sit...and wait. It's too cold to go out. I think it's 67 degrees. We might have to put on a sweater... and that's just not something we do here. My motto is and always has been "76 is too hot and 74 is too cold!"


Last year, we weren't so blessed. We spent the winter back east trying to find Ava better medical care and we encountered the WORST winter in over 100 years. It was 12 degrees for almost 5 months. We didn't see the sun for almost 6 months. We didn't touch grass or play at a park for months on end. It was rough...not only on me, but on the girls.


Zoe took to the snow and cold pretty well. She refused to wear a jacket until it got below 20 degrees, and then it was like pulling teeth to get it on her.


Ava, on the other hand, is a California girl through and through. At one point, I had to run to the store to get food for Ava's formula. There was a little snow on the ground and it was COLD! Sub-zero when you factored in the windchill. And the wind was strong. We get to the store and I climb in the backseat and get jackets on both of the girls. 


"OK Zoe, when I open the car door, I need you to MOVE...it's REALLY cold!" I say in my most assertive Mommy voice.


Ava is so bundled she can barely move. I'm already freezing (because really, I'm a wimp). I climb back into the driver's seat, grab and pull Ava to the front with me, turn off the engine, remind Zoe to MOVE quickly, jump out of the car, close my door, open Zoe's door, and.....


Zoe's slowly dancing to the door singing, "Look how fast I'm moving Mommy!"


At that very moment, a massive wind hits me and Ava in the face (OK, maybe not massive, but it felt like ice picks stabbing my face) and my 17 month old child, who doesn't talk yet, starts repeating "No, no, no, no, no ,no!" like a yogi in the middle of a mantra.


Zoe, in the meantime, is still thinking she's hilarious. "MOVE IT!!!!!" I scream at her. She looks at me, sees that I'm about to boil over and manages to get herself out of the car.


5 months!! 5 months of that kind of cold. I've NEVER felt those temperatures in my life. We occasionally get a frigid day in the mid-50s around her...but HOLY COW!


So even though we are facing "Stormwatch 2010" this weekend, I try to remind myself of last year. I try to remember that it is only 36 hours and not 5 months. I am grateful to be back home and grateful to be able to go outside 360+ days a year.


Overall, things are going better than my last post...Ava hasn't vomited again, I'm feeling a little more grounded, Zoe' cough seems to be easing up, and we're looking forward to the holidays and enjoying some family time.


I just hope that I don't start getting depressed from the 36 hours without sun...it really does take its toll! 


Enjoy the pictures!

Ava...just because it's a cute picture...she was about 18 months old

Zoe thought the snow was pretty cool.

I have a million shots of Ava looking just like this! She HATED the cold and snow. She would go berserk when she would see me get the snow pants out.

Zoe back east at the zoo (last year)

Bad Phase...

So we're in this really crappy phase where Ava vomits when she cries hard. Not with the whiny sniffling cry that most kids do, but when she really cries. It's been happening a few times a week and it is exhausting for all involved. It's happened twice today.


Every time Ava starts to cry...for whatever reason...I grab her and run to the tile. If I can at least minimize the clean-up, it makes it a little easier to handle and it tends to be a little less stressful. I try to get to the sink or a bathtub, but that's not always possible.


She is also starting to get a cold and I've found that when she is "snotty", her stomach tends to be a bit more sensitive to her crying spells.


The hardest part...she's a toddler...and toddlers cry...about everything! But it seems to only be when she's really hurt or really upset.


So, now what I do is start analyzing my formula. I drive myself crazy with, "What did I change?" "Did I use too much (fill in the blank)?" "Is she sick?" "Did I feed her too fast?" And the biggest question..."Are we heading into another period of vomiting and another symptom?"


You see, it's not easy having a child like Ava. Granted, there are children a lot sicker and worse off than her, and there are parents dealing with WAY worse things everyday than what we deal with. There are children dying and suffering and being tortured through surgery after surgery, being stuck with countless needles, poked and prodded, and just being alive every day is excruciatingly painful for some children.


But having an undiagnosed child is rough. For a long time, we would obsess over every little cut, bruise, and bump. Were we watching the progression of her "disease", or did she just bump her knee on the slide? 


What we've found over the last couple of years is that most of these things have nothing to do with a disease process and are just Ava being a kid. But we just can't get away from that little voice in the back of our heads that asks, "Is tomorrow gonna be the day that the other shoe drops?"


We believe we are past the life and death stage with Ava, but I do always secretly wonder if tomorrow her kidneys are going to shut down or is her heart going to stop... As parents, we all worry about our children, but not in the way parents of a special needs child worry. The worry is different. It's not better or worse...just different.


Most parents worry about their child fitting in, doing well in school, being happy, not getting hit by a car... Special needs parents worry about things on a whole different level. 


And...it's exhausting. I'm exhausted to my very core. My soul and spirit are tired. I'm just TIRED and I sometimes wish the whole situation would just go away. At this point, there is no light at the end of the tunnel.


With an undiagnosed child, there is nothing to put your arms around...nothing to understand...nothing to look forward to. There is no way for us to have any idea what life will be like. No disease to predict a path of progression. No timeline and no timeframe.


The divorce rate in marriages with an undiagnosed child is something like 90%. The financial and emotional stress is unimaginable and indescribable. The entire family suffers. Siblings feel neglected and marriages are put on the back burner. Mothers feel helpless and fathers can't fix it. This also takes it's toll.


We just aimlessly continue on. We do tube feedings and hope that one day Ava eats. I'm a pretty positive person and I try to put a positive spin on things, but sometimes...it just gets to me. I'm in the stage where it's just getting to me. The vomiting gets to me. I HATE it and I don't deal with it well.


So I try to give myself permission to HATE this whole thing. I give myself permission to be angry about it, and I allow myself the acceptance to know I'm not a bad person for it.


I know this is just a phase I'm in, I know it will pass, and I know that Ava is worth every tear I've shed.


It is what it is...and it's OK.

Time to Eat!!!

Ava Showing her tubie

This is how it looks when Ava's hooked up for a feeding.

Ava is expected to help with her feedings. She opens the port on the tube, she helps push the syringes, she holds the tube while I get the next syringe, and then she closes the port.

We do this 4 times a day.

"Ava, it's tubie time." Into the kitchen she runs. I set her on the counter and she gets "fed". It's quick and easy.

World of Color

We finally saw World of Color at Disneyland's California Adventure. Well, by "see it" I mean...from behind. It's this really great water show with movie clips projected on panels of water and tons of lights, fire, and amazing music.

We got there early to get our "FastPass" so we could see it from the front, but alas, tickets were gone within an hour of the park opening, and we didn't get to the park until 3:30. The show was at 8:15.

As you can see, it was quite bone-chilling at 60 degrees and we had to actually bundle-up. We went on Toy Story and then staked out our spot by making a barricade with blankets and the stroller around 5:00. After a nice dinner at StoryTellers Cafe, we hunkered down and waited an hour for the show to begin.

Disney knows how to put on a show...even from the back! We had a great time and can't wait to see it from the front.

I've dealt with enough vomit to last a lifetime!

As an infant and baby, we listened to the societal norm and had Ava on the standard formulas. When we realized that her intake was an issue, we tried every version of every formula on the market. Hundreds of dollars were spent trying to increase the palatability of the formulas and spark Ava’s interest in eating them. It was never an issue of Ava being able to tolerate the formula; we just couldn’t find a formulation that she wanted to eat.

In January 2009, everything changed…

Ava had had her NG tube (a tube that goes through her nose and down into her stomach allowing her to be fed) for about 3 months. Diagnosis was nowhere on the horizon. We’d spent 8 days at our local Children’s hospital, 4 days at one of the top hospitals in the country, and countless doctor’s visits, tests, and numerous urgent care visits to replace the NG tube.

Over the course of a few days, Ava started vomiting. It wasn’t the normal spitting-up that young children often experience; this was projectile, horrific, gut-wrenching vomiting. She would do it during a feeding or within 5-10 minutes of finishing a feeding. At the onset, it was only once or twice a day. We justified it a million ways…we fed her too fast…there were air bubbles in the syringe…the formula was too concentrated. We seemed to always be able to come up with a “reason”, so we weren’t horribly concerned when it first started.

Within a week, it became a problem with EVERY feeding. We tried everything. I tried to feed her only an ounce every 10 minutes, I tried lessening the concentration of the formula, I made sure she was sitting upright… but none of these things helped. It continued to worsen.

It became so bad that we would feed her sitting on a waterproof crib mattress so when she vomited it was easier to clean up. Most of the time, it seemed like she threw-up more than we put in. We couldn’t believe this tiny 7 month old could vomit as much volume as she did.

I got to the point where I dreaded feeding her. I would silently be crying as I pushed in 1cc, then another, and another…. Was she going to throw-up? I’d study her face for the telltale signs. Her lips would go pale, and her sweet little eyes would give me this horrified look as if to say, “Please stop feeding me!” She would even push the syringe away and start crying when she would see me come toward her with the feeding supplies.

Poor sweet Zoe would run screaming out of the room when Ava would start vomiting and would sit crying and sobbing uncontrollably on the floor. She’d be backing up as far as she could against the wall while she was shaking and almost hyperventilating…a look of horror in her eyes and terror in her screams. She became petrified of Ava’s feedings. She would start crying when it was time to hook Ava up to the tube. She became obsessed with vomiting and was constantly asking if various people in her life were going to “burp” (as she called it). The poor child’s life was so filled with vomit and her anxiety was so high that she got to a point where she couldn’t make it through an hour without some mention or concern about vomiting.

We woke up on a Saturday morning and Mike did Ava’s feeding. Within a few minutes, every single drop came up and flew about 5 feet. Past the waterproof crib mattress, under the couch, on a laptop that was on the other side of the room, and all over the wall. I’d had it…. I lost it…. I sobbed 5 months worth of tears….I was empty. This one act of vomiting finally broke me. My stress threshold had been reached. I just wanted to give-up. I wanted it all to go away. It just had to stop. My soul had been beaten and ripped apart. I was exhausted to the very core of my being.

We decided to take her to the ER at the hospital she was at the month before. She was admitted for dehydration. We stayed for 12 days with countless tests and they tried a million variations of formulas and feeding schedules. Her g-tube was surgically put in on the eighth day, and the feeding trials and vomiting continued.

By the twelfth day, her medical team came in the room and declared, “We don’t know why she’s vomiting, we can’t stop it, and we’re going to just send her home.” As thrilled as I was to be leaving (more on the hospitalization later) what was I going to do with her at home?

Mike started the long drive up to get us, I packed up our stuff and fed Ava one last time. We were sitting on the couch by the window when Mike wheeled in the stroller with the car seat and walked toward us. Ava started vomiting. It was the biggest round of vomiting she’d ever had. By the time she was done, she and I were sitting in a massive pool of vomit on the couch…literally a POOL. We called the nurse who told us that we fed her too fast and sent us on our way.

Mike and I left knowing they had given up on us. We were on our own. Ava was going home to die. How could they abandon us? How could they allow us to take home a child that was unable to be fed? We asked to be re-admitted as we were walking down the hallway by the nurses’ station and they said that her room had already been given to another child waiting in the ER. They sent us home because they needed her room…THEY NEEDED HER ROOM!...we were appalled.

We got home and the vomiting continued. On the third day out of the hospital, we went back for our “re-check”. We explained to the doctor that she was still vomiting and as he was writing in her chart with his head down, said, “OK, we’ll get her admitted and schedule her fundoplication.”

Of all the things we have done for Ava, I am really proud of what we HAVEN’T done. A fundoplication is a pretty radical treatment that seems to be done on every baby/child that has any kind of reflux or vomiting. It is drastic and carries life-long consequences. It is riddled with complications and doctors do them like they are the solution to everything. In a nutshell, the top of the stomach is wrapped around the base of the esophagus and tightened. By doing this, you prevent the child from vomiting and burping.

A dear friend of ours is a pediatric ICU nurse and told us, in no uncertain terms, to make sure that no one EVER “fundoed” her. She told us countless stories of these poor kids who spent hours upon hours retching and in excruciating pain from gas build-up with NO relief. The only way some of these kids were spared from the agony was passing out from exhaustion. She called it “torture”. Fundos have their place, and they are not inappropriate for every case, but the rate at which they are done to these small children is obscene!

So we refused the surgery. The doctor stood up and as he walked toward the door said, “ Then I’m sorry, I can no longer help you.” And out the door he went. We were officially on our own. We took Ava home and instead of doing what the doctors told us…which was to keep shoving the formula in (“If she vomits, just put more in.”) …we decided to fix her ourselves. The doctors weren’t going to help us. This was it…do we just keep doing what we’re doing and let our beautiful baby die, or do we fight?

We chose to fight…and it was (and still is) the hardest fight of our lives. It changed us and it changed the course of Ava’s life. We decided to take control. We decided to use some common sense. We decided that Ava’s nutritional status and brain development were the absolute most important things right now. She can always learn to eat. We can play the “withhold food and see if she gets hungry” game later. Right now, her brain needs to grow. Right now, her body needs to be nourished. Life could be permanently altered for Ava without the right nutrition. We weren’t willing to take that chance. To hell with the doctors! This was our daughter and it was time for us to stand up, fight, and be the parents she deserved.

So the real war began…

Having a tubie does have some positives...

It's funny when I stop to think about how much Ava's tubie has changed our lives.

I was SO strict with Zoe's diet as a baby and toddler. She didn't eat ice cream or chocolate until she was 3. In fact, I use to make her "green" pizza. It was one of her favorite meals and she would often ask for it. I found all the green veggies I could, steam them, and then put them through a food processor. I included kale, brussel sprouts, asparagus, broccoli, green beans, peas, spinach...the recipe changed each time I made it, but the batches were big and I froze it in single serving sizes. It became a little joke with me to see how many crazy things I could put in the puree and still have Zoe eat it. A slice of bread, spread on the green "sauce", and melt a bunch of cheese on top. She ate it like it was candy...three times a week at a minimum! And so was always the way with Zoe. She was a great eater, ate EVERYTHING I gave her, and happily indulged in lots of fruits and veggies. She was easy...it was fun...it made me feel good to have her eat this way...I felt like I was a good mom...and people marveled at her diet.

Looking back, I do laugh a little at myself. But I do not, nor will I ever, regret how I handled Zoe's diet. I wouldn't change a thing. She got her VERY FIRST cold when she went to pre-school. She was, and still is, a healthy and smart young girl with a strong desire to eat "brain" foods. She likes treats but doesn't over-indulge and understands the concept of eating healthy foods first and having a sweet after. Like me, she LOVES desert, but (unlike me!) will happily eat a good meal before having it.

Then Ava came along. Everything I believed about eating and foods changed. My self-worth and confidence plummeted. Of all people to mother Ava...who thought it wise to choose me? I'm insanely type-A and controlling, I believe that nutrition in early childhood can shape our entire lives, and I'm all about food and how it relates to children's growth and development. So I struggled with my own self-doubt and tried to grasp the reality that I was unable to feed my child...while at the same time, living in fear...real FEAR...every day, that my baby was going to die. Mike and I would stand outside her bedroom in the morning and fight over who would go in and wake her. I would beg him to go in. I didn't want to be the one to find her dead in her crib. I mean, if we lost her, I'm not sure how life goes on...but if I was the one who found her... So we lived with that constant fear looming over our heads for almost 2 years...and we would have the same fight every morning...and it took it's toll.

So how do I get this child that refuses to eat? How do I possibly manage to have a child that will happily starve herself into the grave?

The g-tube has not only saved Ava's life, but it has saved me as well. It has allowed me the freedom to give her all the nutrition she needs without the bargaining, cajoling, and fighting involved with poor eaters who don't have this life-line. I CAN'T and WON'T turn food into a constant battle. I have another daughter to be concerned about, and food is the last issue I need my girls to worry about.

In our house, food is something we eat to live...it is put on everyone's plate and life goes on. Conversations are had, we laugh, we goof around, and I covertly watch as the plates slowly empty. I sit next to Ava and I silently watch as her food becomes cold. Most of the time she doesn't even pick-up the food she has on her plate, but on a very rare occasion, she might dare to put a little bite in her mouth. We don't rejoice, we don't scream and clap and cheer. This isn't a behavioral issue that can be modified with positive reinforcement or bribery. This is some sort of medical disorder...

After the meal, the plates are cleared and Ava comes into the kitchen to get tubied. It's quick and easy and really not a big deal. Within a few minutes, she's on her way...back to playing or torturing Zoe.

We believe we have passed the "life and death" stage and we are now in the "wait and see" phase. Doctors are stumped and Ava doesn't qualify for any therapy because she knows HOW to eat. Every test imaginable has been run, and in many cases, re-run. We still keep our eyes and ears open for possible answers, but the days of scouring the internet, endless doctors' appointments, and running test after test are over. Life has settled into some normalcy. Life has trudged on.

So we wait.

I've come to a time of quiet acceptance. It is what it is...and it's OK. Mike and I took charge of her care 18 months ago (more about that in another post) and we do what WE know is right for her. In doing so, I regained my confidence as a mother to this unique child. No longer was I helpless...I was truly empowered. She is the child she is because of our perseverance and dedication. I credit the doctors with doing more harm than good at this point and I believe this will be our life for many years to come.

So Ava's tubie has saved us all...in many more ways than I can say. She may, one day, choose to tube-feed herself for the rest of her life. I'm OK with that. I know that I have done EVERYTHING in my power to provide her with the best medical care possible, the best nutritional support available and I have worked hard at keeping her childhood normal.

I have no regrets. I don't feel like I have failed in some way. I feel confident we have made the right choices (many times, against medical advice). Ava is our miracle. She's done everything the doctors' said she wouldn't. She's alive. She's happy. She's funny. She's smart. She's our sweet Avie!

Tubie Changes...UGH!!!! (video at the bottom)

I've really been struggling the last week or so...do I really want people to see EVERYTHING we deal with?

The plan was simple...I thought it would be neat to show our family and friends a video of Ava's tubie being changed out. After all, this is something we do every 3 months, it's part of our lives, it's part of Ava's life with a g-tube.

I don't hide the fact that I have a love/hate relationship with tubie changes. It's always nice to have a clean fresh tubie. After awhile, the valves wear out and the inner parts of the tubie get dirty. Most of it can't be cleaned and you just have to deal with formula getting trapped in the mechanics of this life-saving, simple device. So I LOVE the newness after a tubie change.

However, the first one I ever did ended badly. I removed the old tubie easily enough, and I actually put the new one in without a problem. It was after inflating the little balloon inside Ava's stomach that I realized the tubie wasn't long enough and it was compressing the granuloma on the outside. As soon as the balloon was filled, Ava screamed and sobbed and kept grabbing at the tubie. There was a look of shear panic and terror in her eyes as she kept grabbing and arching trying to stop the pain. Imagine putting on an earring and pushing the back piece on as hard as you can...OK, actually, imagine the hole in your ear being a huge infected mess and THEN putting in an earring and pushing on the back piece as hard as you can. Sadly for Ava, this was all happening around her tummy. It was truly excruciating!

I deflated the balloon and through Ava's fighting I was able to pull the tubie out. She calmed down almost immediately. Great, I had stopped the excruciating pain, but now I don't have a tubie in place to feed her. Dozens of scenarios raced through my mind, but the most obvious one was to put the old one back in.

Oddly enough, she stayed pretty still for me as I poked and prodded her tubie track. I tried and tried... but where was the track? I couldn't find it. I kept trying, but the granuloma had gotten pretty angry and seemed to swell and block the track opening.

The second logical choice was to take her to the emergency room and have it replaced. In theory, you have about 12 hours before the track starts to close, but no tubie mom wants to go longer than 1-2 hours without that vital little opening secured.

Ava and I met Mike at the closest ER. After they admitted us AND we waited over an hour for the doctor to examine her, the hospital realized that they weren't equipped to handle a pediatric g-tube emergency. We were discharged and referred to the children's hospital that was half an hour away. The clock was ticking and we were about 4 hours without a tubie. I was starting to panic. My hands were shaking and clammy and I was feeling out of breath.

The children's hospital tried to place it with the fluoroscopy (moving x-ray) but had no luck. They had to take her to surgery to locate the track and replace the tubie. Ava was crying as we walked back into the surgery area with her. The anesthesiologist quietly took her from Mike's arms and with a quick, "We'll take good care of her," they were gone. Her sweet little eyes pleading with us through tears as the team whisked her away. Once again we were helpless... and, for 30 minutes, my heart stopped beating.

Finally, the radiologist appeared in the waiting room and said that the track was still there and open, but it was a struggle for them to find it. The granuloma had all but sealed off the opening.

The tubie was back in. Ava was waking up. She did fine. My breathing slowed. My hands steadied. My heart started beating again.

So, back to my struggle.

If the feeding tube has been in for awhile and the track from the outside to the inside is "healed" and well established, the process is easy. Most tubie moms do it themselves to avoid yet another trip to the doctor. We also find that our kids are much calmer in their home environment than in the cold and sterile doctor's office. I've changed a few over the year and a half we've lived with tubie... but with each tubie change, my hands shake, my breathing quickens, and my heart stops beating for that minute or so it takes to change it out.

I changed tubie last week. Mike took the video and Zoe held Ava's hand. Ava was a bit upset to begin with. She didn't want to do it and was nervous after all of the granuloma burning we've had to do lately.

Mike starts the video camera and I show the tubie and explain how it works and what I'm going to do. I deflate the balloon on the old tubie and then reach over to get the new tubie. I then gently pull the old tubie out of her stomach, slide the new one in, and Ava grabs my hand and manages to pull out the new tubie. She starts to panic, she's grabbing my hands and screaming "NO MOMMY!" "NO TUBIE!". Zoe starts crying and screaming "I GOTTA GET OUTTA HERE!". I'm trying my hardest to get the new tubie back in, but Ava's gotten so scrappy. She's such a fighter that I can't wrangle her AND get the tubie in.

Mike immediately puts down the camera and helps hold Ava down while I finally get tubie in, get the balloon inflated and get the new bandage on. When he turns the camera back on, we're all a little out of breath and shaken, but the new tubie is in and secured.

Within a few minutes, after lots of hugs and kisses and cuddling, Ava and Zoe run downstairs and play.

I wasn't sure I should post the video. It's hard even for me to watch Ava fight and scream... especially knowing she's fighting and screaming at me. It's weighed heavy on my mind. On the one hand, it is a small glimpse into our lives. It's a glimpse of the horrors that we have to go through... but I'm not sure this is a horror that people need to see. It's upsetting to watch a small defenseless child fight so hard...

In the end, after a lot of thought, I've decided NOT to post the video... instead, I'm posting a video of Ava talking about her tubie. It's a better snapshot of how this has affected her. I hope you are able to see what an amazing child she is.

("stick" is the silver nitrate stick I use to burn off the granuloma)

June 30, 2008

"OK Steph, it's time to push."

I took a deep breath and Mike and the nurse held my legs as I pushed with all my might. Thinking back, I don't remember how many times I pushed or how long that part of Ava's delivery lasted, but she was born at 1:04 pm during a very uneventful delivery.

"What is it...what is it? Boy or Girl?" I said through tears.

"A perfect little girl" replied the doctor.

I couldn't help but laugh as I cried...I swore that Ava was a boy. My pregnancies were SO different...it was impossible that this baby was a girl. She fooled me for the entire 9 months! But, if I must admit, I was thrilled to have another little girl!

On the other hand, I was disappointed in my intuition...it's usually right on...but it wasn't this time. Nor would it be again.

Ava was an exact duplicate of Zoe when she was born. Beautiful angelic little faces that looked months old as opposed to hours old, incredible amounts of thick black hair, and these adorable little hands and feet. Both of them were amazingly perfect. But with Ava, something wasn't quite right from the beginning.

We spent most of that first day trying to get Ava to take a bottle. (I couldn't breastfeed due to medications I was taking.) She just didn't seem to have any interest in eating. I figured that she was new and tired and her appetite would increase over the next few hours or even days. We had a million justifications for her lack of desire.

That night, my mom and I "fed" Ava and hunkered down for the night at around 8pm. The nurse woke me around 4am when she came in to do vitals and check on Ava.

"When was the baby's last feeding?" the nurse casually asked.

"8 pm," I replied.

The nurse looked confused. "No, what time did you feed her during the night?"

"I didn't, she's been asleep since I fed her at 8:00."

In a way, I was pretty excited that she had slept so long and attributed it to my swaddling technique. This baby was going to be a breeze. She was already sleeping 8 hours...what more could I ask for?! After all, Zoe left the hospital sleeping 5 hour stretches at night...I must be doing something right!

The nurse, almost angry, said, "You MUST feed her EVERY 2-3 hours! She's gonna start having blood sugar problems...she absolutely CANNOT go that long without eating!"

I think I kinda chuckled to myself as the nurse insisted I wake Ava up and feed her. When she left the room, my mom and I joked about never waking a sleeping baby, "fed" Ava through her sleep-induced haze, and went back to sleep ourselves.

The rest of our stay went about the same. Ava would be awake for short periods, "eat", and then be sound asleep for hours at a time. The next few nights she continued to sleep long stretches, and I found myself unconcerned...actually excited...by the amount of sleep we were all getting. I kept patting myself on the back for having "the right touch" when it came to getting babies to sleep.

Once again, my intuition was failing me. How did I not see what was going on? Where was my mommy instinct that I have always relied so heavily on? My brand new baby was sleeping insanely long stretches and all I could do was be excited at how "easy" she was going to be. She was slowly and methodically starving herself...and I didn't see it happening. I didn't notice.

Why didn't I see it?

Looking back now, I get angry at the mom I was during those early days of Ava's life. My common sense was gone and I didn't want to disrupt our easy and peaceful transition into life as a family of 4.

I often wonder...did I sense a problem and chose to ignore it? If that were the case, I don't think I could ever forgive myself. But I really don't think it occurred to me that something was wrong. I think I was in that euphoric stage of early motherhood. I was busy with my newborn and struggling to make my toddler feel loved and important during this huge transition in her life. We just went about living life...the best way we knew how.

But all through that first month, the battle of our lives was slowly brewing in the background. How could we begin to fathom the fight we were about to undertake? We had no idea how much our lives were about to change.

Soon, we would be fighting to save our daughter's life...and we would do it almost completely on our own.

Why?

Have you ever had to hurt your child?

I know we've all accidentally pinched their skin in a buckle... or stepped on a toe when they're hanging on our legs while trying to get dinner ready. How many times have I bumped into one of the girls and knocked her down? I think the list goes on and on...and our guilt is endless.

Our purpose in life...our ONLY purpose in life...is too protect these amazing little beings. We feed and water them, clothe and house them, and are prepared to violently protect them at any cost. They are pieces of us and our basic instinct is to keep these babies safe. I think most parents would do anything in their power to avoid having their child EVER feel pain.

So I frequently ask "Why?"

Why do I have to repeatedly and deliberately hurt my baby? Why do I have to live with the guilt of inflicting this pain on her? I lay in bed at night and hear her sweet little 2 year-old voice in my head... "Mommy, NO! Mommy, STOP! Mommy OWIE!" I hear her sister saying, "I'm here Ava, hold my hand!" and I wonder how this affects innocent Zoe.

I ABHOR granulomas! It's the nasty tissue that builds around Ava's g-tube site and pushes up against her "tubie". It is raw and painful and causes the feeding tube to become tight and irritated. Every tubie-mommy fights a daily battle against it. Sometimes the tissue quiets down and stays under control...sometimes, if you let your guard down, it comes back with a vengeance.

We are in the vengeance stage. It's a daily fight and it's not won easily. In fact, right now I feel like I'm losing the battle.

Ava knows it's coming. She knows that after her bath, I'm going to remove her gauze and then hurt her. She starts telling me, "No!" and grabbing my hands the minute I lay her down, wrapped snug in her towel. She sees the silver nitrate stick and knows that I'm going to hurt her.

Silver nitrate is a caustic substance that actually burns her skin...literally BURNS her! I have to run this stick on the granuloma (which already hurts) and BURN it off! I have to do it every night until it gets back under control. I have to burn off enough so that more of the granuloma comes off than builds-up over the next 24 hours. It HURTS and it makes her cry...ALOT!

I don't have to use the silver nitrate all the time, I can usually keep the granuloma tissue under control...but this time, it has gotten away from me...it's pretty big and I'm struggling to get rid of it.

She tells me throughout the day that "tubie hurts, Mommy"...but to help her, I have to hurt her...and every time I do it, it feels like a piece of me is being burned too.

I tell her that if she'd just eat...if she'd just eat we could take "tubie" out and the pain would go away. But she's 2...sometimes her eyes have this sadness when I tell her that...as if she knows...but she doesn't know how to fix things. It's as if she's looking to me for the answers and pleading with me to help her. It's devastating to me to admit that I don't know how.

So all I can do right now is just hold her tight, rock her, and wipe away her tears as the silver nitrate sears through her delicate skin...and wait for it to stop hurting.