The Chair

Last week we sold the glider and ottoman that had been in the kids' nursery for years. I'm not sure why, but I was very sad to see it leave the house. Maybe I'm sad because it was the last piece of "baby" furniture we had.  The crib is long-gone, and while A still has the original bookcase and dresser in her room that the kids used as babies, those pieces of furniture are not "baby" furniture, and she'll use them for years to come. 

I remember picking out the glider, over 8 years ago, when I was pregnant with D. We chose a calming sage green color, which would match the Classic Pooh theme we had going on in the nursery.  The glider rocked, and had a matching ottoman.  The ottoman had a pull-down panel on which to rest my feet, which was perfect for nursing.  We put the glider in a cozy corner of D's bedroom, next to a Winnie the Pooh lamp that glowed warmly, close to his crib.

I spent many, many hours in that chair with D.  I nursed him for 14 months, and lots of the nursing took place in that chair.  That's also where we read to him nightly, rocking back and forth.  Books like "Good Night Moon" and "Brown Bear, Brown Bear, What Do You See?" and "Guess How Much I Love You?"  All books that will forever be in my memory, books that I can probably recite verbatim today. 

When A was born, and finally came home from the hospital (at 12 weeks old) we had to move the chair.  We had too much medical equipment in the room.  We had the IV pole on which a bag of (my pumped) milk would drop in to her feeding tube. We had a sat monitor, to measure her blood oxygen level. We had a suction pump to suction out the secretions in her tracheostomy.  We had a 3 tiered cart filled with her medical supplies.  There was no cozy corner anymore; instead, her room looked more like a hospital room. We moved the glider to the middle of a wall.  I never got to nurse her on it, as she never nursed, only had the feeding tube.  And while we did do her nightly booktime on the glider, it just didn't have the same feeling as it did with my son.

Eventually, we took the glider and ottoman out of her room, in order to make the space more roomy.  We put it in our room.  My intention was that I would use it to sit and read MY books...but of course I never did that. It sat in our room for a few years, with a pile of papers cluttering the chair and J's clean laundry pile sititing on the ottoman.  We knew we had to get rid of it, and finally, last week, a buyer from Craig's List came, paid for it, and hauled it away.

Before it left, I sat in the chair one last time. I took my son,  who is now 8, and held him like a baby, rocking to him and singing him the song I made up for him as an infant. I did the same for my daughter, cuddling her and singing to her.  The chair didn't hold the same good memories for me with her as it did for my son, and that makes me sad.  And now all the baby furniture is....gone.

An Encounter from Down Under

My kids have been out of school all week (our school district always takes off the week of President's Day) and I've been busy trying to keep a balance between entertaining them and also having some relaxing downtime. It's been a nice break overall, although I have to admit I'm ready for school to start again on Monday.

Yesterday I took the kids to Legoland. We go often, as we have season passes and it's not too far away. We've hit a sweet spot in the kids' development where A is finally tall enough to go on most of the rides, including the roller coasters, and D is finally tall enough to be able to sit by himself without an adult next to him. Before, we'd have to go as a family, but since A can go on the rides with D, and D can sit by himself, I'm now able to take them by myself.

I decided to go on a ride that we've never been on before, which was some sort of logjammer ride (where you sit in a log-shaped boat and go up a hill..and then down into some water, getting splashed along the way). When A had her tracheostomy, I would have never even considered such a ride, as I wouldn't want water to get in her breathing tube, but now that the tube is out and the hole is closed water rides are fair game. Amazingly, D had never been on the ride either, so we were all looking forward to it.

As we walked over to get in line, A told me, "I need to take out my hearing aids". I couldn't believe it! Of course, I would have taken them off---at around $3000 each, you'd better believe I'm taking them off whenever there is a possibility of her getting wet--but SHE mentioned it to me FIRST! I had no idea that she had such self-awareness about the hearing aids, that she now knows that they must be kept dry. My little girl is growing up! As we walked over, I took off the aids and put them safely in my tote bag.

We got in line.

Another family got in line right behind us, a family consisting of a mom, a dad, and two adorable little boys. Both boys were were wearing hearing aids! I couldn't believe it. We rarely see kids with hearing aids. Glasses, yes---but hearing aids are much rarer. And here were TWO kids wearing them! I had to say something, so I told the mom that my daughter also wears aids.

That got us into a conversation that lasted the whole 30 minutes or so that we were waiting in line. It turned out that this family was visiting from Australia. Both of her boys (who were roughly my kids' ages) have hearing loss due to a rare metabolic disorder. They were so nice and it was great to hear about how things are done Down Under. I learned that:

• In Australia hearing aids are covered by the government 100%. (Here in the United States they aren't covered by most insurances. At all.)
• Not only are hearing aids 100% covered, but they are replaced with NEW hearing aids every 3 years.
• The Australian sign language, (called Auslan) is very, very different than American Sign Language (ASL). Out of 26 letters, only 1 letter (C) is finger spelled the same.

D hit it off with their older son, and they ended up sharing the log together during the ride. I got their email address, and hope to keep in touch. It just goes to show that you never know who you might meet. We've been to Legoland a gazillion times and have never even thought about going on that ride until yesterday. What were the chances that the one time we do, a family with two kids with hearing loss would be right behind us?

My Daughter's First Swim!

Yesterday I had the BEST day ever at the pool.

I have had many great days at the pool, which is at my gym. I swim there twice a week as part of my triathlon training, and have enjoyed many small victories there over this past year as I build up my yardage. Each time I up my yardage by another 500 yards is a huge milestone for me.

But yesterday, I experienced a milestone of different kind. Yesterday my 5-year old daughter, A, was able to go swimming for the first time in her life.

Since A's had a tracheostomy since she was 4 months old, she was not allowed to be in water. Submerging her in water would have drowned her almost instantly, as the trachestomy, or breathing tube, led directly to her lungs. Bathtime was precarious; I never was able to fill the tub, instead having to let the water run without the drain plugged in, and I had to be careful in leaning her head all the way back while rinsing her hair, lest water get down her tube. Not only had she never been in a full bathtub or pool, but she'd never been in the ocean, in the shower, or even run through sprinklers. Water was just our enemy.

Last year, she got the trach removed, which was a godsend. However, she still had the hole in her throat (called a stoma) where it had been, and her doctor wanted to wait a year before closing it up, just to make sure she did ok. Things got easier, not having to lug around gear for the tracheostomy, but we still had to avoid water submersion, since there was a hole in her throat. We did take her to the beach for the first time last summer, but the sand was as far as she got. No ocean for her.

Two weeks ago A had the surgery to close the hole. And while we had complications post-surgery, she is home now and doing great. Yesterday was the day to finally take her to the pool and fulfill my dream of having her join me. She LOVED it! There was pure joy on her face the entire time. I can't even imagine what it must have felt like for her....for the first time in her life, she was entirely wet! She was either in my arms the whole time or bobbing in her lifejacket (with me holding her, of course, as she doesn't know how to blow bubbles when her face gets wet). She kicked her legs, splashed her brother, and loved it when I spun her around fast so her legs trailed behind her.

We are getting swim lessons for her this summer, and I can't wait for the first one. My daughter, the swimmer! I waited a long five years for this day, and experiencing her bliss in the water yesterday did not disappoint. I look forward to many more lazy pool days with her this summer.

Coming Full Circle

Today is A's 5th birthday. Happy Birthday to my sweet girl! She spent the day in the hospital, although she is doing so much better. Yesterday she went into the O.R. and they extubated her.....and today they moved her from ICU into a step-down unit. No more ventilator, no more oxygen, and no more IV (except for meds). She is now eating full meals and drinking. The only thing is that she still has her chest tubes, which will hopefully come out tomorrow. Once they come out, and she does well (meaning no more lungs collapsing!) she can come home within a day or two, or at least that's what I've been told.

The odd thing is that when they moved us into the step-down room, I recognized it immediately. WE ARE IN THE EXACT SAME ROOM WE WERE IN 5 YEARS AGO, WHEN SHE GOT HER TRACHEOSTOMY! We spent 3 long weeks in this room, post-surgery, learning how to care for her trach: suction it, clean it, change it, etc. This particular unit used to be the trach/airway ward....now that ward is on a different floor, and this ward is being used for step-down, so with all the rooms we could have possibly gotten (Children's Hospital is a big place!) I am convinced we are in this room for a reason. We've come full circle.

I don't think I've ever explained why A had a trach in the first place. She was born (5 years ago today!) with a gajillion medical issues. One of the biggest ones was that she had a vascular ring, which essentially was a blood vessel coming from her heart that was wrapped around her trachea and espophagus. This had lots of bad effects. For one, she couldn't eat, so she lost almost a pound in the first 48 hours of her life (this is what started her stay in the NICU). When she was 10 days old, she had surgery to correct it, but the area where the blood vessel had been wrapped her trachea hadn't properly developed; it was floppy, not rigid, and kept collapsing in on itself. This made it difficult for her to eat, even though now her esophagus wasn't being squeezed, because her breathing was so labored (with a horrific stridor) that she never got the hang of sucking, breathing and eating at the same time. (Eventually we gave up on the idea of feeding her orally, and although she had been using an NG tube (feeding tube down her nose) we had a g-tube (feeding tube in her belly) surgically inserted a few months later. As my loyal readers know, she is now an eating and drinking champ and in fact had the g-tube removed last summer!

But the trach was a harder decision to come to. All throughout her 12 week NICU stay, her breathing was horrible, and it continued to be so after we finally brought her home. Her stridor was so loud that we were literally able to hear her breathing if she was upstairs and we were downstairs. Her oxygen levels were fine (we came home with a monitor) but she was so LOUD! Her pulmonologist kept recommending a trach, but we just didn't think she needed one.

When we'd had A home for 7 weeks (she was 4 months old at this point) she was re-hospitialized because a surgery she'd previously had to help with reflux (a Nissen fundoplication) had come undone and needed to be redone. While in the ICU post-surgery, the nurses were very concerned with her breathing. I mean, it was LOUD. Everyone tried to convince us to get a trachestomy, but we wouldn't hear of it.

Finally, another meeting with A's pulmonologist changed my mind. He pointed out two things, both of which were very valid and very scary. One, she wasn't developing. She was 4 months old and not even holding her head up. She wasn't gaining weight, despite the fact that all of her nutrients were being directly pumped into her stomach. Every calorie she was given was going straight to breathing. The doctor convinced me that a trach would make it easier for her to breathe, and allow her to thrive in ways she wasn't yet. Two, he had a valid concern that should she get sick, even a common cold, her airway was so narrow that it would collapse on itself and she could die; we wouldn't even be able to do CPR if God-forbid we needed it, as there would be no airway. A worst-case scenario would be her getting an emergency tracheostomy by an EMT in an ambulance.

I was finally convinced. It wasn't what I WANTED to do---who'd want to do an elective tracheostomy on their infant daughter?--but it was what NEEDED to be done. I feel, in that moment, I truly became a mother, even though I'd been a mother for 2 1/2 years already. I was ready to give up convenience and gain a lot of hassle in order for my daughter to live and thrive. It was the most painful decision I ever made, and undoubtedly the most unselfish.

So, she had the trachestomy. I sobbed the night before, taking pictures of her neck that I knew would never look the same. We were told she'd have the trach for 1-2 years (in fact, she had it for almost 4 years) and I wanted to remember how her bare neck looked. After the surgery, we came back to the trach ward, to this very room in which I am now typing, where we lived for the next 3 weeks, learning how to care for it.

We missed a lot of things during the time she had her trach. Because the trach was a direct opening to the lungs, water was our enemy. She's never been in a pool, a shower, or a filled bathtub. She didn't go to the beach (too much sand that could get in her trach) until it was removed last summer. I tried to make the best of it. I used to dye her trach ties (the fabric ties that wrapped around her neck to hold the in the trach) with RIT dye; she NEVER had a white tie, instead having purple, green, blue, and many shades of pink to choose from. But I always wanted the trach OUT. And last year, it was.

Now the stoma, or hole in her neck, is closed. And even though we had an unfortunate complication from the surgery, I am so happy. We made it. She's alive, and she's thriving---the two reasons we got the trach in the first place. In fact, she began to thrive right after she got the trach, and we knew immediately we had made the right decision. And being back in this very room is a fitting end to this chapter of A's life.

I Miss My Daughter (ICU Update)

It's been 6 days and we're still in ICU. My daughter, A, suffered a complication of pneumothorax post-surgery (we were there to close her stoma from her old tracheostomy). In my last post, I had reported that her lungs didn't collapse. I was wrong. They did. I guess that is the definition of pneumothorax. But she is doing well, is stable, and is set to go to the operating room tomorrow for the doctors to take a peek down her airway; if all goes well, she will be extubated (that is, they will remove the breathing tube which has been down her throat and take her off the ventilator). Her chest tubes will be removed a day or two later. And then we can finally take our baby home.

She has been sedated this whole time, kept asleep so that she doesn't mess with the breathing tube. I miss her so much, even though I'm with her most of the day. I'm actually typing this in the hospital room, right next to her. But having my daughter sleeping next to me is a tease. I miss her voice, her bright eyes, her feisty personality. I miss reading to her, playing games, working on her pre-kindergarten workbook that we've been doing daily. I miss HER!

As hard it as it is to believe, this is our first hospitalization in almost 5 years; only her 3rd ever. Her first hospitalization was when she was a newborn. She spent almost 12 weeks in the NICU (neonatal intensive care unit) before we were finally able to bring her home. We finally brought her home, but after only 7 weeks she was back in the hospital, this time to re-do a previous surgery (a Nissen fundoplication that had come undone) and to do her tracheostomy. We were in the hospital for a total of 4 weeks exactly.

Both of these stays were almost 5 years ago, in 2006.

Back when we left the hospital in 2006, after getting her trachestomy, we were saying goodbye to the nurses when her charge nurse said to me, "oh, we'll see you again. Kids with trachs always come back...even if she gets a cold, you'll be back because it's hard." But you know what? She never went back. J and I made sure of that. When she got a cold (and trust me, over the 4 years that she had the trach she had many colds) it was hard. Having a cold with a tracheostomy means suctioning the mucus out several times an hour, 24 hours a day. We had no night nurse (and only had a day nurse to help out 3 days a week). When she had a cold, we got very little sleep for 3 nights in a row...we were up all night suctioning her and giving her breathing treatments and caring for her. But it was worth it. We did NOT want her hospitalized if we could help it.

And since then, there has been nothing. Well, we DID have two overnight stays since then, neither of which I count as a hospitalization. In 2007, at the age of 7 months old she was in overnight for one night when she had her cleft lip repaired. And last year she was overnight was one night when her doctor took her breathing tube out (he wanted to observe her overnight). I don't count either of these as a real hospitalization, though, since each was for only one night and she wasn't SICK...both were for observation, only.

This time, however, it's different. She's sick. A collapsed lung, and the results of her tissues filling with air could have been fatal. She is on a ventilator, with two chest tubes stuck in her, getting all the air out. Just yesterday she looks almost normal to me...it took a long time to get the air out. Her lungs are re-inflated. Her vital signs are good. She is going to be ok....yet we're here, because she's not ok yet.

Home is a hard place to be. I've been coming home each night to sleep; normally, I'd sleep here with her in the hospital, but since she's sedated and out-of-it and doesn't really know that I'm here in the first place, I've been opting to go home to get some much-needed rest that I can't get here in the hospital room. Once she wakes up, of course (tomorrow, hopefully) I'll be here all night.

But at home, her absence is strongly felt. When she was in the NICU, I desperately wanted her home, but she wasn't really MISSED at home, because she had never been there. Even when she was in the hospital for the month when she get her trachestomy, a few months later, I missed her, but she was still so new to us (we only had her home for 7 weeks) that she wasn't quite an essential part of the family routine yet (if that makes sense). But now? At age (almost) 5? She completes the family. It's hard eating dinner with just me, my husband J, and my son, D. I'm sad doing laundry and having none of her clothes to wash and fold. It's difficult walking by all her toys, dolls and games, which are just sitting there waiting for her to return and play with. I hate not having her sippy cups to put in the dishwasher, her books to put back in her bookshelf, her little body to snap into her carseat, her warm scent to inhale when I'm cuddling with her in the morning.

She'll be home soon enough. I'm glad she's getting the care she needs in a top-notch Children's Hospital. But man, it's hard. I miss my daughter so much.

Why I Love "American Idol"

Another season of "American Idol" ended this week. I love the show, and have watched it from almost the very beginning (I started watching toward the end of Season 1). Some seasons are boring and hard to watch, but this year was fun and exciting for me. I was super-sad that James Durbin got eliminated, as I thought he should have gone all the way.

I am a huge music fan, and enjoy the contestants' twists on songs I love. I also love the "rags to riches" stories of everyday people getting discovered. Some winners have faded into oblivion (did we ever really expect to hear from Taylor Hicks again?) but some have become super-stars, like Kelly Clarkson and Carrie Underwood. And many, many contestants that didn't take the top prize have done very well. I am a huge Adam Lambert fan, and also love Chris Doughtry.

But there's another reason I love the show. There have been many contestants with various disabilities and challenges, many of which my own daughter, A, struggles with. For example:

• Season 8's Scott MacIntyre is blind. Now my daughter isn't blind, but she is a severe vision impairment. She has colobomas in both eyes (gaps on her optic nerves) giving her gaps in her fields of vision.
• Season 4's Anthony Federov had a trachestomy as a child...just like my daughter.
• Season 7's David Archuleta had a paralyzed vocal cord, just like my daughter. His paralysis resolved, while my daughter's hasn't.
• Season 5's Elliot Yamin is 90% deaf in his right ear. My daughter is deaf/hard-of-hearing in both of her ears. By the way, Elliot also has diabetes and is insulin-dependent!
  
• Season 10's James Durbin has both Asperger's Syndrome and Tourette's Syndrome. My daughter has neither, but I am still so impressed he overcame these challenges to finish in fourth place this season!

There might be other contestants with challenges that I am forgetting, or am not aware of. But just these few that I mentioned are so inspiring to me! I think about their parents. Having been in their shoes, having had a child who is is vision-impaired, hearing-impaired, had a tracheostomy, etc....I imagine their joy of watching their children overcome these challenges and become world-famous on the hit show "American Idol", and beyond.

Truly inspiring. My daughter will accomplish the same. You may never see her in a recording studio (but who knows!) but I can promise you she will acheive great things. She can do whatever she wants to do.

Surgery Date Set!!!

June 23.

That is the date of my daughter's surgery.

I am over the moon about this. This surgery is to close the stoma (or hole) left from her tracheostomy. My daughter, A had the trach, or breathing tube, in her throat from 4 months old until last July, when it was unexpectedly removed by her ENT at age 4. Since last July, she's had no actual breathing tube, and this alleviated so much stress from me, as now I am able to leave her with someone other than a nurse or my best friend (who was trained in how to care for her) and no longer have to carry around a suction machine, dye trach ties and do the thousands of other things that one must do when your baby has a breathing (and feeding!) tubes. Getting both tubes removed last summer was nothing short of a miracle for us.

Yet, although her trach was removed, the hole in her throat remained. Her ENT wanted to wait a year before closing it, to make sure she really could breathe well without it. A went through this entire past year just fine, even having a few colds and a bout of croup. A few breathing treatments with the nebulizer and she was good to go. So, she's ready to have the hole closed.

Because A has spent virtually her entire life (from age 4 months to present) with a tube or open hole in her throat, giving direct access to her lungs, there has been many things she has never done. Most things involve water; immersion in water, or even water trickling down her trachea, could drown her instantly. So, once she has the surgery and is healed, for the first time EVER A will be able to:

Go in a pool
Take swim lessons
Take a bath with more than one inch of water in it
Have shampoo rinsed from her hair without having to tilt her head back all the way
Have water drip down her face
Take a shower
Go in the ocean
Run through sprinklers

As you can see, this is huge for us. Imagine, being almost 5 years old and never, ever have been in a swimming pool. Or taken a full bath. Before this would have killed her; soon, it will be her delight.

In the same surgery, her opthomologist will also do an eye surgery on her left eye to correct her amblyopia, or lazy eye. Although her left eye is legally blind, with something like 20/200 (or it might be 20/300, I forget) eyesight, it's better than we had previously thought and this should help her even more.

I CANNOT WAIT for this surgery--it will be a one night stay in the hospital, and then a week to heal. Hopefully she'll be healed in time for her 5th birthday, just a week after the surgery.

And I know just where I want to spend her birthday.

Splashing in the local pool.

My Daughter Continues To Amaze

Today I got news about A that blew me away. Not that I should be surprised...my daughter has constantly been amazing me with how she exceeds every expectation, whether it's with her gross motor skills, fine motor skills, or medical issues.

This time, the news was about her speech.

To give some background, A has had a lot of things going against her in terms of her speech. Specifically:

1) She was born with a bilateral cleft lip. While this was repaired at 7 months old (so well, by the way, that you have to look closely to see the scar) she has minimal movement on her upper lip. I think with the scars there her upper lip just isn't as pliable as it should be, which of course affects the production of certain sounds.

2) She is deaf/hard-of-hearing. She didn't get hearing aids until she was 6 months old, so she has always been 6 months behind in her "hearing age". And there may be some sounds that even with the hearing aids in she can't hear very well. Obviously, if you can't hear a sound, you can't reproduce it.

3) She has a paralyzed vocal fold.

4) Up until this past July, she had a tracheostomy, which affected speech production because a lot of air would come out of her stoma. Even though she's been trach-free for 6 months, some of these sounds ("f", "s", and other airy sounds) are just now coming in.

So, clearly, speech has always been an issue for her. We started speech therapy at Children's Hospital when she was only 11 months old. Back then, the goal was to get her to use sign language to communicate, as she was unable to make many sounds at that point. Eventually, she started to sign, and then speak. In fact, most of her signs have dropped now; she is pretty very verbal now, only using sign language once in a while to get her point across. Last year, she started speech therapy through the school district, per her IEP. Between getting two hours a week of school-based speech therapy, and one hour a week of speech therapy at the hospital, she's done a lot of intensive work. The hospital therapist mainly works on articulation, and the school therapist mainly works on language.

This past Monday, our private speech therapist did some testing on her (the Goldman-Fristoe test of articulation). Today she called me with the results:

A's speech sounds are within normal range.

Yes, you read that correctly. My baby, for whom speech has been such an issue, is within normal range for speech articulation!

There are still a lot of sounds she has trouble with, like "s" blends ("sh", "sl", etc). But our therapist said that for a lot of children these sounds don't even come in until age 6 or so. A is only 4 1/2! And she thinks that once A gets her stoma closed, which should be this coming June, even more sounds will improve. So, for all intents and purposes, A's articulation is within normal range, even though she still has work to do.

A's speech therapy is approved with our insurance only through the end of January. Our therapist suggested that we continue to see her for the next few weeks, and then take a voluntary break. We can then have A reassessed in 6 months. If she needs to come back, we'll submit the paperwork with insurance. If she doesn't need to come back, all the better.

I feel ok about this. This is just like her ending the hospital-based physical therapy in December: while she still has work to do with her gross motor skills, she is doing well enough to end, and is still receiving PT through school, plus adapted P.E., horse therapy, and now ballet, tap and gymnastics. She is still DOING physical things. With speech, she will still be getting 2 hours a week of speech therapy through school. And there are language building activities we can do at home. We talk all the time, so this is never-ending.

I cannot believe that A will be done with speech therapy at Children's Hospital! Having done it weekly for the past 3 1/2 years, it doesn't seem real. But discontinuing is bringing us one step ever closer to making her as typical as possible.

2010--A Recap For Me And My Daughter

2010 started out as a hellacious year.

A few days into the new year, my beloved grandmother died. She was 90, and was very sick and her death was expected, but it was hard for me. She was my last grandparent, and I had been close to her. Two days after she died, my cousin's 16 year old daughter was tragically killed in a horrible car accident. As much as my grandmother's death upset me, it was her time. For my teenage cousin, it was so horrific that even now, almost a full year later I am tearing up just typing this. The rest of January was a blur----I was sick, the kids were sick, my family was grieving, and I remember desperately wishing that the year would just get over with. It had only been one month into 2010, and I thought things would never get better.

But better they got. In fact, the deaths in my family aside (and I know it's hard to put aside, but I also need to look at the GOOD), this year has the best ever, especially for me and my daughter, A. To recap:

In January, my daughter, A, started walking unassisted at age 3 1/2 . With all of her medical issues, not the least of which was a lack of semicircular canals, which are the part of the inner ear which control balance, it's amazing that she is walking at all. I also began training for a half marathon, the first race of any major distance I'd trained for since 2003.

In March I turned 40....looking and feeling better than I ever have. I also got diagnosed with migraines that month...which was great because I've been suffering from them for years and now with a diagnoses I could get prescription medications that work.

In April A did her first race...a 50 yard toddler trot that even a few months before would have been unimaginable. It was also my son, D's, first race. He did the 1/2 mile run.

In June I got inspired to not only train for a half marathon, but to also start triathlon training. As I was not a swimmer or biker, this was a stretch for me. This started a workout routine for me that had me biking, swimming or running every day. And to this day, I exercise daily, unless I am sick or have some other extenuating circumstances.

In July we got the surprise of our life when not only her feeding tube was removed but also her breathing tube. A had no tubes in her body for the first time since she was 2 days old.

In August I completed my first half marathon since 1999, the America's Finest City Half, and beat my time from 11 years before.

In September I did the Disneyland Half Marathon, again beating my time.

In October I did my first two triathlons: the Mission Bay Triathlon and the Fearless Triathlon (which was a double sprint).

In November A stepped up and down a curb for the first time, thus accomplishing her final goal in physical therapy. Although we will be getting PT services through the school district for some time to come, this ended her medically-based PT services--which she has been getting weekly since she was about 2 weeks old. She also saw her nutritionist for the last time, another specialist she had been seeing since she was born.

Finally, in December, we got news about her vision that blew me away. I had always been told that her left eye was legally blind. Our opthomology visit this month now leads me to think otherwise. I also gave a speech about my miracle baby in front of 800 people.

All of these milestones----medical for my daughter, fitness for me--have made 2010 an amazing year. Add to the milestones that my daughter's speech has blossomed, her writing has improved with occupational therapy, and my own mental health has improved as I have taken more time for myself, and it has been a stellar year.

Freaking Out About The Past

As I mentioned earlier this month, we are in the process of burning our home videos to DVD. My daughter, A, has been loving them. She asks all the time to watch "videos", as she calls them. I think she loves them because they are movies starring people she loves. Most of the videos burned right now are of my son, D, when he was a baby through todderhood. I think she gets a kick out of watching her big brother as a baby.

Today I put on a video of D's third birthday party. A was about 10 months old at the party, a non-crawling infant. Heck, she wasn't barely sitting up unassisted at the party; some footage shows me setting her up in a tripod position on the floor (sitting with her hands out for support). As soon as she saw herself on the video, she started hysterically crying and insisted I turn it off and put a new DVD in.

Why? I think she is scared of images of herself at that age. She was born with a bilateral cleft lip, and she had surgery to correct the cleft at 7 months. At 10 months old, her scars from the surgery were still pretty fresh and raw. Come to think of it, she doesn't like even photographs of herself at this age--or earlier. If she sees a picture of herself with the unrepaired cleft lip she also freaks out.

I understand why the images scare her---although I thought she was gorgeous even with the cleft, a young child would not understand. And she certainly can't comprehend that she is that same baby. She looks totally different now---the scarring is so minimal that you have to look really closely to even tell she had a cleft lip. She doesn't freak about about old pictures of her with the tracheostomy and feeding tube, probably because she got them removed less than 6 months ago and can still remember them in her body. The cleft lip? She has no recall. It must upset her to think that was her.

I will not force her to watch those videos or look at the pictures. I don't want her to be upset. I know one day she will even look back on photos of herself with the trach and be astounded that that was her. She older she gets, the farther away she gets from the medically fragile baby she had been. She is growing up to be a tough, resiliant, determined, smart, and beautiful little girl.

And that is how I want her to think about herself.

Today's Amazing Revelation

I had the oddest revelation today.

I got together with some of the moms from A's new preschool class for lunch. All of these women are new to me; last year A went to the morning session, and this year she's in the afternoon session, and there has been no overlap of kids from year to year. I was excited to get together and meet some of the moms, as I see them at drop-off and pick-up but really hadn't had a chance to actually talk to them yet beyond basic pleasantries.

Anyhow, somehow the issue of A being in therapy came up. Someone asked what kind of therapy she is in, so I answered "speech therapy, physical therapy, adapted P.E., deaf/hard-of-hearing therapy, horse therapy, and soon we'll be adding occupational therapy". She then asked me why A needs so many therapies. It hit me: These women just met A. They have no clue about her medical background. They don't know that she used to have a breathing tube, feeding tube, just learned to walk this year, etc.

It was quite the revelation, to say the least. Until this point, everyone in my life fell into one of two categories: people that were with me from "the beginning", and people that I met in more recent years.

Many of my current friends (and all my family, of course) were there in the beginning. These are the people who knew me before A was born. They knew me pregnant with her, and saw me through the grueling 12 weeks in the NICU. They are the ones who called me all the time, who brought me meals, who watched D (then age 2) so that I could spend time at the hospital. They were with me when I was agonizing over the decisions to get her g-tube, and then her trach. They were my shoulders to lean on when I worried about her not meeting her milestones on time. I quickly learned, through the whole ordeal, who were my true friends and who weren't.

On the other hand, many of my current friends are newer. These are people I met AFTER A was born. I met some people taking mommy-and-me and music classes with A. I met the moms through her preschool. I met even more moms through my son, D. Since A was born, D went through 3 years of preschool and kindergarten. When all of these moms met me and my family, they met a mom who had a daughter with a trach and a feeding tube. A came "as is". My new friends might ask why she had a trach, or why she wasn't walking yet, but they were new to her story. However, they quickly became A's cheerleaders, and were just as overjoyed as my older friends when she started to hit her milestones, walked, got her tubes out, etc.

It hit me today that every person I meet from here on out--whether it is a mom from A's preschool or D's 1st grade class, someone from my synagogue, or a new neighbor--will not know what we've been through. Sure, they might see a beautiful little girl with glasses and hearing aids, who has a speech delay and can't quite run or jump the way other kids her age can. But they have no clue that she used to have a plastic tube in her neck. Or a plastic tube in her tummy. Or that she didn't walk until this year, at age 3 1/2. Or that her speech is 2000% improved from where it was even a year ago. Or that she almost died but now is a living miracle. They wont' know until, or unless, I tell them.

Wow. It's a whole new chapter in my life. I think I like it!

Some Assembly Required

When my daughter, A, now age 4, came home from twelve weeks in the NICU, she also came home with a g-tube (feeding tube) in her tummy. It came with a lot of equipment (pump, bags, IV pole, syringes, etc) and required a lot of care (cleaning the site, putting gauze around it to soak up leakage, etc). My mother remarked that A came with "some assembly required".

She did not know how true those words would become.

A month after coming home from the NICU, A went back into the hospital to get a tracheostomy. THAT came with a lot of equipment (catheters, suction pumps, mist machines, nebulizers, etc) and required a lot of care (suctioning mucus, changing the trach, etc). We very much had to "assemble" our daughter every day, making sure that her g-tube and trach were well taken care of and that we had plenty of supplies on hand.

A month after getting her trach, at the age of 5 months, A got her hearing aids. We chose pretty one (purple aids with pink molds) but even pretty hearing aids require care (testing the battery daily, cleaning the molds, etc).

At this point, it wasn't a joke anymore that A came "some assembly required". She truly did!

When she was 2 years old, and still not walking by herself, our physical therapist helped us get a gait trainer (walker) for her. This enabled A to be upright, instead of crawling, and walk with assistance. It was big and bulky and cumbersome, but she loved being able to walk around at school with the other kids.

She needed shoe inserts at this age, too, to help correct the way she was stepping.

Also around this time, A's opthamologist recommended that she wear glasses. Not really for correction; her vision is not near- or far-sighted. However, A has coloboma, meaning that she has gaps in both of her optic nerves. Her left eye is legally blind, which means that we need to protect her right eye as much as possible. Plastic glasses offer a lot of protection, so even though I didn't want to add ANOTHER device to my daughter's body, we got the glasses. I really want to protect what she has.

So, by the time she was 3 years old, my daughter was the ultimate in coming "some assembly required". She had a g-tube, trach, hearing aids, glasses, and a walker. At times it seemed I was caring for a 90 year old, not a toddler! At the height of her needs, we had to lug with us: her portable feeding pump; Pediasure and a bag to put it in; extension tubing and syringes for the g-tube; her suction pump for the trach; tons of extra catheters; an extra emergency trach and trach ties; plus scissors, paper tape, gauze, extra hearing aid batteries, and various sundry other items. This doesn't include the emergency kit I always had in my car with even more extra supplies, including an ambu bag for CPR and oxygen (thank God I never had to use either!)

Slowly but surely, some of her assisted devices have dropped away. She began to walk unassisted earlier this year, and had no use for the walker (in fact, I just gave it away to a family who needed one but whose insurance company wouldn't provide one). And of course she got her g-tube and trach removed this past July. Now we only have her hearing aids and glasses, two devices she will likely always need. Compared to what we had been dealing with, this is nothing!

I feel so grateful for all that we DON'T have to do for A these days. We are lucky that most of her devices were gone by age 4. I will never forget the "old days"...lugging equipment, making sure all of our devices were being fully charged overnight, hearing the loud sounds of the mist machine at night. But all of those devices, all the tubing in her body, saved her life. She would not be alive, or thriving the way she is, without them.

No Need for Fear

Today was D-Day.

D, as in Doctor. Our ENT (ear, nose and throat) doctor to be exact. It has been 3 1/2 weeks since A had her trach removed, and this was her first post-op appointment.

I was scared, to say the least.

You see, even though A now doesn't have a trach, I still had some concerns. Actually, one big concern. A still has a stridor, which means her breathing can get loud. Not all the time; sometimes she's a silent breather, as most people are, and sometimes the stridor is a bit loud. But sometimes, like when she is walking fast or doing some other sort of physical activity, her breathing gets really, really loud, as if she is gasping for air. However, I hadn't been too worried....her oxygen levels were 100%, she never turned blue or any color other than her beautiful natural pink coloring, and she never even appeared to be in respiratory distress. If I had ever been even the tiniest bit worried, I would have called the doctor right away.

Trust me, I know respiratory distress. In the months before she got her trachestomy (she had it placed at 4 months old) not only was her stridor really loud, but she would arch her back and neck gasping for air. A few times in the NICU, I even watched her turn blue. So I know the signs of a child in respiratory distress, and A clearly hasn't been, although she at times sounds just terrible.

So it was with great trepidation that we returned to the ENT today. I was scared that, given her stridor, he would want to put the trach back in. And now that I've had a taste of a trach-free life (for example, I am now able to leave A with friends or in a daycare setting, and she took her first trip to the beach last week) I don't want to go back. Of course, if A needed to have the trach put back in, it would be for her health and of course I would do it. But I didn't want to.

Luckily, the doctor couldn't have been more pleased. I told him about the stridor, and he said she would always have it; because she has a paralyzed vocal cord the air going around it will always make a loud sound. Hopefully once he stitches up the stoma in the spring the sound will be decreased (because she still has a hole in her neck, there is still air coming out, which makes a sound). And perhaps as she grows bigger, her airway will get even larger making the sound less. But perhaps not. And as much as I don't want my daughter to be a loud breather, or to make gasping sounds, I'd much prefer this to a trach. I am grateful, and will not let the volume of her breathing bother me or her.

Now I get to finally get rid of all her trach supplies. The machinery needs to be picked up from the company we were renting from, and the numerous supplies we have will be be donated to someone whose insurance doesn't pay for a lot of supplies. The med cart can be removed from her room (it was storing tons of supplies like extra trachs, trach ties, saline, etc). Best of all, I can finally believe that the trach is out for good. This appointment confirmed it for us!

My Beach Bunny Baby

Today A and I went to the beach.

Yeah, I know I wrote that kind of casually, but really, that sentence is something I have wanted to write for 4 years. You see, although we live only 15 miles or so from the beach, I have never been able to take my daughter there. With a tracheostomy, things like sand and water don't mix. Sand can easily get in the trach, and therefore down her airway. And water....well, it is obvious what being in water would do. So even though we live in San Diego, in warm weather and very close to the beach, A had never:

Been to the beach
Swam in a swimming pool
Gone on a water slide
Played at a splash park
Bathed with more than an inch or so of water in the bathtub
Frolicked in sprinklers
Had a water pistol fight

Heck, until this past year she had never even been in a sandbox! We finally let her go at school (she wanted to so badly!) and always made sure she had a heat moisture exchanger (or HME) over the trach to protect it from sand entering. Of course, her hearing aids are a factor as well, but those can easily be taken out, or have a protective cover put on (not for total water immersion, of course, but for things like water gun fights).

When she had her trach removed 2 weeks ago, the first thing I thought of is that she would be able to finally go swimming. I thought wrong. Her stoma is still open, and won't be surgically closed for 6-12 months. Our ENT told us to treat her as if she still had the trach in, at least until he did the closing surgery. So even though so much as changed for us, she still has some limitations.

My two sisters and their families had gotten A some swimsuits and a towel as a "decannulation" gift, which was such an incredibly sweet gesture. At first I thought that we'd have to wait until next spring or summer, after the next surgery, to use it. However, after much deliberation, I thought it would be ok to take her to the beach today. I put a piece of gauze over the stoma, and taped it (both horizontally and vertically) so the airway was effectively closed off and protected. I got her in her swim diaper (her first time wearing one!) and a swimsuit (again, her first time wearing one!) and to the beach we went! It was just the two of us, as J was at work and D was at camp.

A LOVED the beach. Absolutely loved it. The look on her face while walking onto the sand was priceless; it was as if she had been in the Midwest her whole life and was seeing the ocean for the first time. In actuality, she WAS seeing the ocean for the first time, at least up close! We set up our blanket, and then headed to the water. Even though I couldn't take her IN the water, I figured she could at least get her feet wet! The water was freezing (as usual) and I think the combination of cold water and the vastness of the ocean scared her, because within a few minutes she wanted to go back to the blanket, and wouldn't go back to the water's edge no matter how many times I suggested it.

We stayed only about an hour, which was plenty of time for my fair-skinned beach bunny. She played with the bucket and shovel I brought; we made sand castles; we hunted for shells around our blanket; we ate lunch; and we relaxed and sunbathed a bit. The entire way home she kept talking about how she wanted to go to the beach...again.

This will be the first of many beach trips for my amazing daughter. I can't wait to take her again. Next year (God willing) her stoma will be closed, and we can take swim lessons, go to the water park, and maybe, if she allows it, I can take her in the beautiful Pacific.

From the Professional's Point of View

We have had a gazillion therapists, specialists and doctors work with A over the past 4 years. In addition to the many neonatologists, surgeons, nurses and therapists that worked with A during the 12 weeks she was in the NICU, we have had:

Neurology (discharged)
Genetics
Audiology
Opthomology
Cardiology
Renal (discharged)
ENT
Pulmonology (discharged)
GI
Plastic Surgery
General Surgery
Nutrition (soon to be discharged)
Developmental Assessment (discharged)
Early Intervention Team (aged out; this included a teacher and visits from a physical therapist, speech therapist, occupational therapist, vision therapist, deaf/hard-of-hearing therapist, social worker and nurse)
Speech Therapy (both through our insurance and through the school district)
Occupational Therapy (discharged)
Physical Therapy (both through our insurance and through the school district)
Adapted Physical Education
Deaf/Hard-of-Hearing Therapy (to start this fall)
Regular Pediatrician
Dentist

Whew! That's a lot of specialists! This doesn't even include the nurses that Children's Hospital and the county would send to our home soon after the NICU discharge, nor our fabulous nurses we had to help take care of her.

I am so consumed with my life as mother to two children, including one with special medical needs, that I rarely think about the professionals in our life. I rarely think about how THEY feel treating my daughter. I wrote about it a little when her physical therapist expressed how pleased she was at A's motivation. I have also heard from other therapists that their work is most rewarding when they see the kids make progress: A progressing from rolling to crawling to walking was amazing for our physical therapists; A progressing from signing to saying a few words to speaking in full sentences puts a smile on our speech therapists' faces.

Today I got a glimpse into how it is for her doctors to treat her. We had a follow-up appointment with the surgeon who removed her g-tube (the incision/scar looks great, by the way). She was in the room when the ENT removed her trach (again, the trach removal was a total surprise for us). So I asked her....what did the ENT say when he was looking at the trach? She said that he and his team looked, and just said "let's take it out". But she also said that he (the ENT) was very excited. In fact, they had a little fight about who was going to talk to J and I first in the consultation room post-op. He wanted to go first to tell us that he had taken the trach out; she wanted to go first "because otherwise it would steal my thunder about taking the feeding tube out". Both were excited to tell us! I really think that taking A's tubes out made their day!

The surgeon also told me that it was great for her to take the feeding tube out. She sees so many babies with g-tubes, and it is nice for her to be able to tell parents that she just removed one from a 4 year old; it gives the parents hope that their baby's tubes will someday come out, too. I know the feeling of seeing someone who recently got their feeding or breathing tubes removed, and the sense of hope it instills.

It made me realize just how much these doctors and therapists want the kids to become healthy. The therapists WANT their patients to talk, walk, eat, etc. The doctors WANT their patients to have their feeding and breathing tubes removed, to pass audiology tests, to not need as severe corrective lenses, or whatever the case may be. I now realize that it makes their day to have a success story.

I am so glad that A is, and will continue to become, that success story. I hope that she is an inspiration to others going through similar issues.

Spending 24/7 With My Daughter

Now that A has no trach and no g-tube, we lost all of our nursing care. We were fortunate enough to have a nurse come help me, ever since A was about 6 months old, all paid for by her Medi-Cal. The first year and a half we had an amazing nurse who came 2 days a week. (We were actually eligible for much more nursing, even 5-7 days a week if we wanted it, but I'm a very hands-on mom and only wanted the 2 days of help). Unfortunately, her company folded, and we had to find another company. After a bit of a search, we found a new one who gave us another amazing nurse 3 days a week (I had only wanted 2 days a week, but they had insisted on 3 days). This new nurse was with us for almost 2 years, up until her surgery to remove her tubes. We were very fortunate to have had such fabulous nurses care for A, and I know it. I read lots of blogs, and talk to other people, who are not as fortunate as to find such competent and loving care. Both nurses truly loved my daughter.

Now I have no nurse, and am with A all the time. All. The. Time. This is not new to me....when D was a baby, and up until A was born (when D was 26 months old) I was with HIM 24 hours a day. I had no nanny, no family in town, and only rarely even hired a babysitter for J and I to have a date night. Where I went, he went, and where he went, I went.

Having a nurse to help with A was very liberating. I was still with both of them much of the time, but I able to have a lot of time to myself. Because A had the trach, she needed someone to stay at school with her (not inside the class, but sit outside in case she needed suctioning or other trach care). My nurse sat there 3 hours a day, twice a week. On the rare times she called in sick or was on vacation, I had to do that, and it was very boring and confining. I was so glad to have help doing that! In addition to sitting with her at school, the nurse would watch A so I could have much-needed "me" time: to run to Target or the supermarket by myself, to exercise, to meet a friend for coffee, to rest. And an unexpected bonus was that D got lots of "special time" (just me and him)....if A had been born healthy, I would never have hired a sitter to watch her so that I could spend time alone with him, but we ended up having lots of dates getting ice-cream, going to the park, etc.

Now it's me and A, all day every day (D is in summer camp, but when that ends in a week it will be both of them until school starts!) Not that I'm complaining. First of all, I'm thrilled that she has her tubes out, and it's 1000% worth the trade-off of having no help. Secondly, I CAN take her to daycare if I needed, like the daycare at the gym I took her to last week. Even a friend can watch her if I wanted to ask. Thirdly, and most important, she is a gift, and the time I get to spend with her, while tiring at times, is a blessing. She is getting healthier every day, and I get to enjoy that....

....24/7.

What Do You Wish For When Your Wishes Have Come True?

I have expressed on my blog before just how grateful a mama I am. Despite all the curveballs that life has thrown at me and my family (not the least of which is a husband with Young-Onset Parkinson's Disease and a daughter with a huge list of medical issues), I do appreciate all that we have and how good we have it.

Since A got her feeding tube and breathing tube removed a week and a half ago, I have been thinking of all I had wanted for A in 2010. As I have mentioned before, my big goals are all checked off:

walk

develop more language, both receptive and expressive

eat and drink enough to get her feeding tube removed

get her breathing tube removed

My 2010 goals for her are all checked off, and it's only July! Which leads me to a thought: what do you wish for when all your wishes have come true?

Yes, there are lots of thing I wish for. I wish for A to run and jump and skip and develop even more gross motor skills. I wish for her language to get even better, and her speech to become even clearer. I fervently wish for a cure for Parkinson's Disease. Heck, I will even admit that I wish we would win the lottery!

However, I know what I already have, and am grateful. In Judaism, there is a song we sing every Passover called "Dayenu". Dayenu means "it would have been enough for us". As in, "it would have been enough for us if God had led us out of Egypt", etc. In my case, it would read something like this;

It would have been enough for us if A was only able to sign; instead she is able to talk, with a great vocabulary and in increasingly complex sentences.

It would have been enough for us if A was only able to use the walker to ambulate; instead she is walking around as if she's been walking for years, instead of for only 6 months.

It would have been enough for us if her feeding tube was removed, as was the plan; instead, her breathing tube was also removed and she is tube-free.

It would have been enough for us if she were only able to hear a little bit; instead, although she is deaf in one ear, she is aided-to-normal (with a hearing aid) in one ear.

You see, in my mind, everything that A does for now on is the icing on the cake, so to speak; it's all gravy (why are all those great metaphors food related?). I'd love her to run one day, but it's ok if she doesn't. I'd love her to be able to speak clearly enough that she is understood 100% of the time by everyone, but again, it's ok if she doesn't. She has a solid base now, and anything she does from here on out is...well....the cherry on the sundae. Dayenu.

Burden Lifted

Have you ever had something weigh you down (either literally or figuratively) for a long time? You get used to the burden or discomfort, and after a while it becomes your new normal; you don't even feel it. And when the weight is finally taken away, you realize just how burdened you were. For example, while training for a half marathon last fall I fractured a toe, and had to wear a walking boot for a few months. It was heavy and cumbersome, and when I finally was able to live my daily life sans boot, I felt so light and free.

That's how I've been feeling ever since A got her g-tube and trach removed a few days ago. She had had the feeding tube since 2 months old (well, really since 2 days old when she initially had a tube in her nose) and had the trach since 4 months old. Since she just turned 4 years old a few weeks ago, she had had the tubes virtually her whole life. I knew no different with her. My "new normal" became things that moms with typical kids would never understand: learning how to operate the machinery that would help her eat and breathe, ordering her medical supplies on a monthly basis, lugging a heavy suction machine around everywhere we went, shuttling around town every day for hours upon hours of therapy, being restricted on where we could go (no beach or pools for my daughter!) or when we could travel (it was advised not to take her on a plane in the fall/winter, which is cold and flu season). Since only my husband, best friend, nurse and myself knew how to take care of the trach, my "me time" was contingent on one of these three people watching her, and the date-nights with my husband had to be booked far in advance with either my best friend or nurse. The family joke was that she came "some assembly required" and trust me, it took a long time (especially post-bathtime) to get her ready...between caring for her breathing tube, feeding tube, hearing aids and glasses, she certainly had a lot of extra parts! Getting my son bathed and in bed was easy: just toss him in the tub, get him out, brush his teeth and voila, we were done. With A, it was so much more than that, a process that I quickly got used to but was a pain nonetheless.

Today I had a swim lesson at my gym (I am training for a triathlon and need help on my form and breathing). I had specifically scheduled the lesson for today, as normally I'd have my nurse to watch A. But our nursing care stopped immediately last week upon the removal of the g-tube and trach. At first I was going to cancel the lesson, as I certainly couldn't bring her to the pool. But then I remembered that my gym has a child-care room. A could go to daycare! It was a revelation....I could depend on other people, not just the 3 aforementioned, to watch my baby! I went a bit early, filled them in on her history (ie "See that gauze on her neck? That is where a breathing tube used to be") and left her. I had a great lesson and came back to find her happily playing. She did great! My daughter in daycare! Who knew?!?

In addition to not having to order supplies, lug around a suction machine, dye trach ties, and do the tedious tube care every day, I am looking forward to other things. Like being able to book our babysitter to watch BOTH kids and have more date-nights with J. Like putting A in camp next summer (with her trach, I'd have to bring our nurse, and also being around camp water sports don't mix well with a trach). Like signing her up for "lunch bunch", which is where kids at her preschool have lunch after class, but I never did this last year because I didn't feel comfortable asking our nurse to sit there for an extra half hour (she was already there for 3 hours!) Like not having to change her shirt in the afternoon because her stomach contents leaked through and stained it. I am very much looking forward to taking her to the beach or pool, but that will have to wait until the stoma is stitched up in 6-12 months.

This is just a partial list of what I can do now....of what A could do now....and I am LOVING the possibilities! The truth is, we will always have some extra things to do for A. She still has hours and hours of therapy a week, medication to order, and hearing aids and glasses to care for, but this is all minor compared to the care of her tubes. This weight is lifted off my shoulders, and I am loving the freedom!

Tube-Free and Loving It!

My daughter, A, is tube-free.

Let me say that again. Please bear with me, as it's a sentence I sometimes thought I'd never write.

My daughter is tube-free. No feeding tube. No breathing tube. Tube-free.

Yesterday, she went in to the operating room to get her g-tube removed. This alone was cause for celebration, as she has had a feeding tube since she was 2 days old. I was thrilled to finally be getting rid of the Mic-Key button, as we had not used it for any purpose in exactly a year.

In addition to getting out her g-tube, she had 2 other procedures. Her GI doctor did an endoscopy to look for sign of reflux and at her stomach, and her ENT doctor did his annual trach scope (bronchoscopy and laryngoscopy) to see if she was ready to decannulate. I had no hopes for decannulation, especially after our last office visit. Seriously. I went into the procedure thinking there was a 95% chance he would say to wait another year, and a 5% chance that he would DOWNSIZE the trach to a smaller size (I wasn't even thinking about actual decannulation at that point). We had always been told that the way to get off the trach was to first downsize to a smaller size, then cap it so that she is not using it, and then if she tolerated that, they would actually take it out.

Before the surgery, we had were in the consult room talking to all the doctors involved. The anaesthesiologist came and and said "so, we're downsizing her trach?" That was news to me! Apparently, he had heard that they might be downsizing it during the procedure. This, of course, got my hopes waaaaaaay up, which actually made me upset: instead of thinking there was a 5% chance of downsizing her trach, now I was thinking there was a 70% chance, and I didn't to get my hopes up and then dashed.

The procedures took a long time, and I was getting very anxious in the waiting room. Finally we were called back. The surgeon said that the g-tube removal went well, and explained all that she did. Then our ENT came in. First he showed up pictures that he had taken during the scope. Her vocal cord is still paralzyed (well, one is; the other is functioning just fine), and her arytenoids are still very edemas and enflamed. This we knew; the results have been the same the past few years. But then he said "I thought it was time to stop mucking around; it's time this girl got her trach out".

What?

I wasn't sure I heard right.

Then it hit me...he didn't downsize her trach. HE TOOK THE TRACH OUT ENTIRELY!!! I immediately started to shake and cry. It was so unexpected...I never dreamed that it would have come out that day. It wasn't even on my radar as a possibility.

The next few hours were the big test....could she maintain her oxygen levels without her trach? She went into the recovery room, with the trach on the bedside "just in case". She maintained a blood-oxygen level of 100% there, and all through out the night and today. Every hour that passed by made me happier and happier. This trach was really out, and was not going back in.

We just got home from the hospital a few hours ago. It hasn't really hit me yet just how freeing it will be. No more having to lug around a suction machine everywhere I go. No more having to make sure I have catheters, saline, and other necessary equipment. No more dying trach ties (I used to dye them pink, purple, and other colors to try to make them more fashionable). No more nurses (we were discharged immediately from her nursing agency). No more having to have a nurse or myself stay at school with her. I could have a regular babysitter. I could take her to the local drop-off daycare. I can....I can...I can...

One thing we CAN'T do yet is go in a swimming pool. I had hoped that with the trach out, soon we would be able to do water activities, which she has never in her life been able to do. However, the ENT said that her stoma will not fully close on it's own, and that even if it looks closed there will be tiny opening. So, in 6-12 months, we will have to go back for another surgery, this time to stitch up whatever is not closed up on it's own. I'm hoping to get this done in the spring, so that she will be pool-and-ocean ready by the time next summer hits.

I had come up with a list of 4 things I wanted for A in 2010....and now all are crossed off. Of course, we still have a lot of work to do, especially on speech and language issues and gross motor skills....but all that will come. This little girl is unstoppable.


walk


talk in better sentences and more clearly


get feeding tube out


get breathing tube out

Goodbye, G-tube!

Tomorrow A is getting her g-tube (feeding tube) removed. This is a huge deal. She has had a feeding tube since she was 2 days old: for the first few months she had an NG tube (a tube going through her nose to feed her), and then the g-tube inserted in her stomach when she was about 6 weeks old. We have worked so hard to get off the feeding tube; it seems surreal that it's actually happening. (She is also getting her trach scoped, but really, I have no expectation that her ENT will say it's ready to come out.)

She got the g-tube placed because she never got the hang of coordinating nursing, swallowing and breathing all at the same time (all complications of her vascular ring, which led to tracheomalacia). When she was in the NICU, she WOULD nurse a bit (or drink pumped milk from a bottle) but it would take her so long....about half an hour to drink half an ounce. Too long. I remember the doctors and nurses in the NICU telling me that she might need a permanent feeding tube placed, but I didn't really hear them. The OT (occupational therapist) even showed me a film, showing a child with a g-tube and how easy it was to incorporate tube feeding into daily living. I watched with half an eye; I didn't want to believe that could be my daughter. But it was, and soon enough I had to acknowledge that she wasn't going to be eating on her own any time soon, and I didn't want her to be in the hospital forever.

She got the g-tube placed on August 10, 2006....and the last time we used it was July 18, 2009. Therefore, when it is removed tomorrow, she will have had it for almost exactly four years, and it we will not have used it for almost exactly one year.

So.....goodbye, g-tube! I won't miss you. I won't miss dealing with your leakage every day, with A's clothes wet and stained from stomach fluids leaking out. I won't miss having to order supplies every month from the home health agency (first Pediasure, Kangaroo feeding bags, extension tubing; in this last year only gauze and extra Mic-Key buttons). I won't miss having bulky gauze visible under A's clothes. I won't miss A lifting up her shirt, exposing the button, and having other people do a double-take.

But thank you, g-tube.....for saving my daughter's life. If it weren't for you, she would not have gotten the nourishment she needed to live and grow. It was a hard decision to get you, but it was the right thing to do. And now it's time to say good-bye.