It's been a while since I've blogged, and even longer since I've updated about my daughter. I have no excuse except that I've been busy....and when I've had free time I haven't been in the mood to sit down and write. Last week the kids were on vacation all week; this week I'm trying to catch up on any training I missed. I'm also in the throes of helping to plan my school's foundation's annual silent auction/gala, which is what I'm doing most of the time when I'm on the computer.
My daughter, A, is doing great! She broke her neck in mid-October; you can read all about that here. I am happy to say that after only 4 1/2 months, she is healed! She had on one of those awful halos for 2 months. That was the worst; in addition to having the halo literally screwed into her head in 6 different places, it was attached to a vest that could never be removed. We had to have special clothing adapted to fit over it, and couldn't give her a bath (she had sponge baths during this time). In mid-December, she graduated to a hard neck collar. Getting the halo off was awful---very bloody and painful for her--but well worth it. I was able to give her a bath for the first time in months---words can't express the joy I felt in pouring water all over her. She was able to wear regular clothes again. She had that one for a month, and then transitioned to a soft neck collar. This soft collar just came off on Monday, two days ago.
The orthopedic surgeon is thrilled with her. She has healed beautifully, and while she has lost some range of motion due to the fusion he did, she is still able to turn her neck and nod her head. New bone is growing, and he expects lots more to grow. She is still limited on some activities---for example, he doesn't want her falling from a height, with velocity, so she can't go on playground equipment, etc. And things like roller coasters may always be off limits, which is a huge bummer because she is a roller coaster maniac, like me and her brother (with roller coasters, he's not concerned about the fusion breaking, but more about putting unneeded pressure on other parts of her spine). It's all good though. I know what a gift we were given. Where the break was in her neck (C1/C2) is where people become quadripalegic. Her spinal cord was never touched. I am eternally grateful, and know she has angels looking after her.
Something that I don't think I've written about are the GI issues A has been having. This started back last spring, probably around April or May. Suddenly she started having very loose stools, and was unable to control them, resulting in lots of accidents soiling her pants. At first I got mad at her (she'd been potty trained for a year at that point) but then I realized she couldn't help it. I tried different diet modifications (completely dairy-free; cutting out grease/oil) but still no effect. My step-mother recommended a pro-biotic drink/yogurt, but that didn't help. We ended up seeing a GI doctor last summer, and after lots of blood and stool sample tests, she determined that she couldn't see a cause for the loose stools. She DID see a slight infection, and thought that an anti-biotic would clear it up, but after a round of medications A still had the same loose stools. The new plan was to put her on Immodium to bind her up (which worked) and to schedule her for an endoscopy/colonoscopy to see what was going on in her stomach and intestines.
The procedure was scheduled for November, which I dreaded, but then we had to cancel it because of the broken neck. In the meantime, I had questions about scheduling, etc and tried to contact the GI doctor, but never heard back from her. I got really frustrated with not only her, but her office staff (schedulers and nurses) who I found lying to me in subsequent emails....I felt that A's care was slipping through the cracks. So I requested a different doctor, and was able to get a referral to see the same GI doctor who we used to see. This particular doctor was the one who scoped A 3 separate times, and was the one who eventually removed her feeding tube in 2010. I tried to see her last summer, in fact, but at that time she wasn't taking new patients. I lucked out in getting to see her now. (For the record, this is the 4th or 5th doctor that we've "fired" and gotten a new one. I am not a difficult patient, but I am A's best advocate, and I won't tolerate sub-par health care, especially when we live in a city with some of the the best doctors and children's hospital available).
In the meantime, a few weeks ago A had a bad cold, and I ended up taking her to the pediatrician to get checked out because I wanted to make sure her lungs were clear. We saw the nurse practitioner, and briefly talked about the GI issues that were going on (it came up because when she asked what medications A was taking, I had to respond with "Immodium".) She asked if we had tried probiotics before. I replied that we had tried probiotic drinks the previous summer, but they didn't help. She recommended an actual probiotic powder. I decided to try it, thinking it couldn't hurt. I started her on it last week (I waited until last week because she was off of school for the week; in order to know if the probiotic worked I needed to take her off the Immodium, and I wanted to have her home in case the loose stools happened again. What a nightmare that would be for the school staff).
Well, it's now been 10 days, and she's been fine. 10 days of the probiotic (I just put a teaspoon of the powder on her waffle or in her oatmeal every morning) and 10 days of no Immodium. And 10 days of no accidents, just nice solid poops every days.
Wow.
This morning was the GI appointment with her old doctor. She hadn't seen A in 2 1/2 years, since she removed the g-tube, and it was great to see her. I explained all that happened (she had already read the chart and was up-to-speed) and she agreed with me that there is no reason to scope her right now, as long as things seem good! A main reason for scoping would be to rule out celiac disease, but since she's already scoped her 3 times, plus the blood tests were negative, she knew she didn't have celiac. She said sometimes our gut environment just changes. So, the new plan is to keep her on the probiotic, and if she ends up with the loose stools again to put her back on the Immodium, email the GI doctor and we'll make a plan from there.
So, lots of good updates! A healed neck and hopefully (and I really hope I'm not jinxing us by writing about this) a healed stomach. Additionally, she's going great in kindergarten, is reading beautifully, has made friends at school, and remains a delight and the light of my life.
Showing posts with label g-tube. Show all posts
Showing posts with label g-tube. Show all posts
February 27, 2013
July 30, 2012
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.
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.
August 1, 2011
What Oprah Taught Me
Last month The Oprah Winfrey Show ended it's 25 year run with a lot of fanfare. I have watched Oprah from the beginning, and was sad to see it end. I never watched it every day, but over the years would more of often than not turn it on at 4:00. In more recent years I would tape it daily and watch it if the show's theme appealed to me.
As the countdown to the last show started, there was a lot of talk about what the Oprah show taught people (I also listen to Oprah sometimes on XM radio, so a lot of this was on the radio). People wrote or called in saying the lessons they learned over the years from watching the shows. This got me thinking, because I have certainly learned a lot myself. Some things I learned were from the experts that she had on the show, but more often than not I learned things from everyday people she had on as guests. Two of my favorite sayings that I heard on the show was "How's that working for you?" (a good life quote from Dr. Phil) and "When people show you who they are, believe them" (by Maya Angelou).
However, one of the most poignant things I learned on the show was to be grateful while making my kids' lunches. Gratitude is a theme in my life; heck, even my blog is titled "Grateful Mama" (and here is why). But even I sometimes forget to be grateful for the little things.
A few years ago, I was watching Oprah. I am embarrassed to say I don't even remember what the show was about. I *think* it was about a mother with cancer, and a friend of hers was helping her with her kids when she was so sick with the effects of chemotherapy. I may have gotten the story wrong, but at any rate, the friend was saying something to the effect that her friend, the one with cancer, tried her hardest to make her kid's lunches every day, as it meant so much to her.
That one phrase, a casual toss-away sentence, really grabbed me. It made me realize that I, too, should be grateful that I have the opportunity to make my kid's lunches:
Thank you, Oprah.
As the countdown to the last show started, there was a lot of talk about what the Oprah show taught people (I also listen to Oprah sometimes on XM radio, so a lot of this was on the radio). People wrote or called in saying the lessons they learned over the years from watching the shows. This got me thinking, because I have certainly learned a lot myself. Some things I learned were from the experts that she had on the show, but more often than not I learned things from everyday people she had on as guests. Two of my favorite sayings that I heard on the show was "How's that working for you?" (a good life quote from Dr. Phil) and "When people show you who they are, believe them" (by Maya Angelou).
However, one of the most poignant things I learned on the show was to be grateful while making my kids' lunches. Gratitude is a theme in my life; heck, even my blog is titled "Grateful Mama" (and here is why). But even I sometimes forget to be grateful for the little things.
A few years ago, I was watching Oprah. I am embarrassed to say I don't even remember what the show was about. I *think* it was about a mother with cancer, and a friend of hers was helping her with her kids when she was so sick with the effects of chemotherapy. I may have gotten the story wrong, but at any rate, the friend was saying something to the effect that her friend, the one with cancer, tried her hardest to make her kid's lunches every day, as it meant so much to her.
That one phrase, a casual toss-away sentence, really grabbed me. It made me realize that I, too, should be grateful that I have the opportunity to make my kid's lunches:
- There are mothers who are dead, who have lost battles with diseases or have had tragic accidents, who would have have loved to be around to make their kids' lunches.
- There are grieving mothers who have lost their children, whether to death or kidnapping or other unthinkable happenings, who have no one to make a lunch for.
- There are children (like my own daughter up until a few years ago) who can't eat, who depend on feeding tubes for their meals. I know when my daughter, A, had her feeding tube I would have given anything, ANYTHING, for her to eat orally.
- There are families who don't have enough money to make their kids' lunches (or even have a home to do so in), who depend on public assistance at school to feed their kids.
- There are mothers who are never home, who work all day and night to support their families, and have to depend on others, like nannies, to care for their children.
- One day, maybe sooner than I would like, my kids will be grown and I will have no one to make lunches for.
Thank you, Oprah.
June 30, 2011
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.
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.
December 30, 2010
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.
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.
December 26, 2010
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 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.
December 9, 2010
Graduation Time
Wow. It's been way too long since I've updated my blog. I have no excuse except that I have been pretty busy and overwhelmed---and when I feel this way I tend to withdraw and isolate. I guess this also extends to blogging as well! I know I haven't been as active on Facebook, Twitter and dailymile as I usually am too.
We got some exciting--and bittersweet--news about my daughter, A. She is graduating from two programs that she has been in virtually forever: nutrition clinic and physical therapy!
A has been seeing a nutritionist every 4-6 weeks since she discharged from the NICU at age 12 weeks. Because she had a g-tube practically since birth, and she has always been on the low side for height and weight (typically in the 3rd-5th percentiles) we had to go in to see a nutritionist at Children's Hospital often to do weight checks. She would adjust A's feedings according to her weight (ie adding more Pediasure, taking away a bolus, etc).
We last saw the nutritionist back in May, a few months before A got her g-tube removed. Yesterday we went back for one final weight check. A is in the 6th percentile for height and the 12th for weight! She hasn't had this much meat on her bones in years...and it's all her doing, all oral eating, obviously, since we no longer have the tube (and in fact, she hadn't used the tube since July 2009, a full year before getting it removed!) She told us that A has graduated from nutrition clinic. While I am ecstatic about this news, it was bittersweet, as we have been seeing this same woman every month for basically 4 years. We have developed a relationship with her, seeing her so often, so we both had tears in our eyes as we hugged goodbye.
Right after our nutrition appointment, we went to our weekly physical therapy (PT) session, also at Children's Hospital. We were told that we are being discharged from PT! Now that A has met her big goal--walking up a curb---our therapist feels comfortable discharging her. This is so shocking---A has been in PT since she was literally one week old! Physical therapists would come to work with her during her 12 weeks in the NICU! So the thought of being discharged at age 4 1/2 is fabulous---and scary.
Of course, A will still be receiving services and doing things to boost her gross motor skills. She will continue to have PT through our school district (she gets 30 minutes one-on-one once a week) and that PT has no intention of discharging her for several years, as she wants A to be completely playground- and school-safe first. A also get an hour a week of adapted P.E. through the school district. Additionally, she is also in ballet and horse therapy once a week. And I just found a developmentally appropriate gymnastics class (!) that is in the same time slot PT used to be, so I'm going to sign her up for that to continue building her skills. So with all of that going on, I'm comfortable ending the hospital-based PT, and it IS appropriate to have her do something more community-based instead. However, just like with our nutritionist, we have been seeing this particular PT since A was one year old....every week for 3 1/2 years. It will be sad not to see her anymore.
Again, I am very comfortable ending both the hospital-based PT and the nutrition clinic. I am actually over-the-moon happy, as it means that my baby girl is thriving and flourishing. But it's hard to say good-bye to professionals with whom I have built relationships, and who have been so instrumental in my daughter's success.
We got some exciting--and bittersweet--news about my daughter, A. She is graduating from two programs that she has been in virtually forever: nutrition clinic and physical therapy!
A has been seeing a nutritionist every 4-6 weeks since she discharged from the NICU at age 12 weeks. Because she had a g-tube practically since birth, and she has always been on the low side for height and weight (typically in the 3rd-5th percentiles) we had to go in to see a nutritionist at Children's Hospital often to do weight checks. She would adjust A's feedings according to her weight (ie adding more Pediasure, taking away a bolus, etc).
We last saw the nutritionist back in May, a few months before A got her g-tube removed. Yesterday we went back for one final weight check. A is in the 6th percentile for height and the 12th for weight! She hasn't had this much meat on her bones in years...and it's all her doing, all oral eating, obviously, since we no longer have the tube (and in fact, she hadn't used the tube since July 2009, a full year before getting it removed!) She told us that A has graduated from nutrition clinic. While I am ecstatic about this news, it was bittersweet, as we have been seeing this same woman every month for basically 4 years. We have developed a relationship with her, seeing her so often, so we both had tears in our eyes as we hugged goodbye.
Right after our nutrition appointment, we went to our weekly physical therapy (PT) session, also at Children's Hospital. We were told that we are being discharged from PT! Now that A has met her big goal--walking up a curb---our therapist feels comfortable discharging her. This is so shocking---A has been in PT since she was literally one week old! Physical therapists would come to work with her during her 12 weeks in the NICU! So the thought of being discharged at age 4 1/2 is fabulous---and scary.
Of course, A will still be receiving services and doing things to boost her gross motor skills. She will continue to have PT through our school district (she gets 30 minutes one-on-one once a week) and that PT has no intention of discharging her for several years, as she wants A to be completely playground- and school-safe first. A also get an hour a week of adapted P.E. through the school district. Additionally, she is also in ballet and horse therapy once a week. And I just found a developmentally appropriate gymnastics class (!) that is in the same time slot PT used to be, so I'm going to sign her up for that to continue building her skills. So with all of that going on, I'm comfortable ending the hospital-based PT, and it IS appropriate to have her do something more community-based instead. However, just like with our nutritionist, we have been seeing this particular PT since A was one year old....every week for 3 1/2 years. It will be sad not to see her anymore.
Again, I am very comfortable ending both the hospital-based PT and the nutrition clinic. I am actually over-the-moon happy, as it means that my baby girl is thriving and flourishing. But it's hard to say good-bye to professionals with whom I have built relationships, and who have been so instrumental in my daughter's success.
October 1, 2010
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!
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!
September 27, 2010
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.
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.
August 2, 2010
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.
Genetics
Audiology
Opthomology
Cardiology
ENT
GI
Plastic Surgery
General Surgery
Nutrition (soon to be discharged)
Speech Therapy (both through our insurance and through the school district)
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.
July 29, 2010
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.
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.
July 26, 2010
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.
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:
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.
July 20, 2010
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!
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!
July 16, 2010
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
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.
July 14, 2010
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.
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.
July 8, 2010
One Week Til G-Tube Removal!!!
One week from today, my daughter A will go into the operating room. She will be seen by 3 doctors: her ENT doctor will scope her trachea to see if her trach is ready to come out; her GI doctor will scope her esophagus to check for signs of reflux; and a surgeon will REMOVE HER FEEDING TUBE!!!!!
I am trying not to get my hopes up that her trach might come out this summer. Actually, I don't have a good feeling about it at all. So I'm not focusing on the potentially dreaded ENT news...I am focusing on the fact that regardless of what happens with her trach, a week from today she will have one less tube in her body. We've worked really hard for her to get her g-tube (feeding tube) removed; I thought this day would never come.
She will have to spend one night in the hospital (mainly for observation due to possible infection). I am nervous about that. As hard as it may be to believe, A hasn't really been in the hospital much. Yes, she was in the NICU for 12 weeks. Then she got her trach put in, and was in the hospital for another 4 weeks. And she had her cleft lip repaired and was in the hospital for one night after that surgery.
But that last surgery (the cleft lip repair) was in February 2007, at age 7 months. AND SHE HAS NOT BEEN IN THE HOSPITAL SINCE!!! Even though she has gone into the O.R. the last two summers for her ENT to scope her (and look at her trach), both times have been out-patient...we were home before lunchtime both visits. This will be different, as the surgeon insists on the overnight stay. It's a small surgery---she will be putting a stitch or two in A's stomach to close the hole up, and a stitch or two in the skin on her tummy to close the stoma--but surgery nonetheless.
What I'm most nervous about is that A won't understand she is going to the hospital. She has no experience going inpatient (in her recent memory) and I don't think she would understand if I explain it to her beforehand. I should take A on a pre-op tour of the hospital. I just found out that they offer one every Wednesday evening...but the next one would be the night before her surgery, and I want her in bed early to rest up. It's from 6:30-7:30, so we wouldn't get her home and in bed until about 8:30...and her normal bedtime is 7:00.
I am planning on going to Target and buying fun, new things for her to do in the hospital--coloring books, stickers, etc. I hope this helps. And I will be there the entire time. I won't leave her side all night unless I have someone else there (my husband or my mom) to relieve me.
If anyone has any pre-op suggestions, I'd love to hear. I'm nervous...but super-excited to get this feeding tube finally removed!
I am trying not to get my hopes up that her trach might come out this summer. Actually, I don't have a good feeling about it at all. So I'm not focusing on the potentially dreaded ENT news...I am focusing on the fact that regardless of what happens with her trach, a week from today she will have one less tube in her body. We've worked really hard for her to get her g-tube (feeding tube) removed; I thought this day would never come.
She will have to spend one night in the hospital (mainly for observation due to possible infection). I am nervous about that. As hard as it may be to believe, A hasn't really been in the hospital much. Yes, she was in the NICU for 12 weeks. Then she got her trach put in, and was in the hospital for another 4 weeks. And she had her cleft lip repaired and was in the hospital for one night after that surgery.
But that last surgery (the cleft lip repair) was in February 2007, at age 7 months. AND SHE HAS NOT BEEN IN THE HOSPITAL SINCE!!! Even though she has gone into the O.R. the last two summers for her ENT to scope her (and look at her trach), both times have been out-patient...we were home before lunchtime both visits. This will be different, as the surgeon insists on the overnight stay. It's a small surgery---she will be putting a stitch or two in A's stomach to close the hole up, and a stitch or two in the skin on her tummy to close the stoma--but surgery nonetheless.
What I'm most nervous about is that A won't understand she is going to the hospital. She has no experience going inpatient (in her recent memory) and I don't think she would understand if I explain it to her beforehand. I should take A on a pre-op tour of the hospital. I just found out that they offer one every Wednesday evening...but the next one would be the night before her surgery, and I want her in bed early to rest up. It's from 6:30-7:30, so we wouldn't get her home and in bed until about 8:30...and her normal bedtime is 7:00.
I am planning on going to Target and buying fun, new things for her to do in the hospital--coloring books, stickers, etc. I hope this helps. And I will be there the entire time. I won't leave her side all night unless I have someone else there (my husband or my mom) to relieve me.
If anyone has any pre-op suggestions, I'd love to hear. I'm nervous...but super-excited to get this feeding tube finally removed!
June 29, 2010
I Didn't Know What I Didn't Know
Tomorrow my precious daughter, A, turns 4.
While tomorrow I will be celebrating how far she's come, and how miraculous her life is, today I am reflecting on who I was four years ago today. Because, you see, four years ago today I was innocent.
The day before my daughter was born, my primary concern was about my son, D. He had just turned 2, and I was very worried about how the addition of a new sibling would affect him. I had heard all the advice about how to get the older sibling involved in caring for the newborn....helping to feed a bottle, change a diaper, give a bath. How could I have known that D would meet A a total of 2 times, in the hospital, before she was whisked away to the NICU where he would not lay eyes on his new sister for 12 more weeks? How could I have known that D couldn't help with a bottle (she came home getting 100% of her nourishment from her g-tube) or give her a bath (her trach necessitated VERY careful handling in the tub on my part).
The day before my daughter was born, I had rarely considered that kids can have prenatal strokes. Sure, in a previous life I had worked doing language research with kids, and one population that we did language testing on were kids that had had strokes...but really, in my mind, strokes were largely for older people.
The day before my daughter was born, I only thought about cleft lips in reference to the Smile Train ads I saw on tv and in magazines. You know, kids in third-world countries. It never occured to me that my own child could be born with a cleft lip.
The day before my daughter was born, I'd never heard of the word "stoma", let alone had to learn to care for two of them and the tubes that are inserted in them (her g-tube and trach).
The day before my daughter was born, I assumed that I would have another healthy child, much like my son, who is healthy and typically-developing. I wouldn't have believed that my daughter would be born with a heart defect, a balance impairment, deaf/hard-of-hearing, and vision-impaired, among other birth defects she has.
The day before my daughter was born, I thought that NICUs were for other kids.
The day before my daughter was born, I didn't fully know and appreciate the power of prayer.
The day before my daughter was born, I was incomplete. I didn't know it at the time, but having my daughter filled the missing void.
The day before my daughter was born, I had no idea how strong I was. I had no clue the type of mother I would be expected to become. I didn't know I would have to become a therapist, teacher, and advocate as well. I didn't know that I could suffer hearing bad news heaped upon bad news in the NICU and still get through the day. I knew I was an optimist, but I didn't truly know that I would always look for the silver lining.
The day before my daughter was born, I had no concept that some kids don't develop with a little bit of help from their parents. Some children need their parents, physical therapists, occupational therapists, speech therapists, developmental teachers, a team of physician specialists, hearing aids, glasses, walkers, feeding tubes, breathing tubes, and sheer will power to develop.
The day before my daughter was born, I was selfish. Yes, having my son made me less selfish--you can't be a good mother and be totally selfish at the same time---but having my daughter made me put all of my needs and wants aside and focus solely on what was in the best interest of my baby.
Tomorrow I will celebrate the miracle of A's life. Today, I remember the innocent, care-free mother I once was....and know that because of my daughter, I am a much better person today. Thank you, my amazing girl.
While tomorrow I will be celebrating how far she's come, and how miraculous her life is, today I am reflecting on who I was four years ago today. Because, you see, four years ago today I was innocent.
The day before my daughter was born, my primary concern was about my son, D. He had just turned 2, and I was very worried about how the addition of a new sibling would affect him. I had heard all the advice about how to get the older sibling involved in caring for the newborn....helping to feed a bottle, change a diaper, give a bath. How could I have known that D would meet A a total of 2 times, in the hospital, before she was whisked away to the NICU where he would not lay eyes on his new sister for 12 more weeks? How could I have known that D couldn't help with a bottle (she came home getting 100% of her nourishment from her g-tube) or give her a bath (her trach necessitated VERY careful handling in the tub on my part).
The day before my daughter was born, I had rarely considered that kids can have prenatal strokes. Sure, in a previous life I had worked doing language research with kids, and one population that we did language testing on were kids that had had strokes...but really, in my mind, strokes were largely for older people.
The day before my daughter was born, I only thought about cleft lips in reference to the Smile Train ads I saw on tv and in magazines. You know, kids in third-world countries. It never occured to me that my own child could be born with a cleft lip.
The day before my daughter was born, I'd never heard of the word "stoma", let alone had to learn to care for two of them and the tubes that are inserted in them (her g-tube and trach).
The day before my daughter was born, I assumed that I would have another healthy child, much like my son, who is healthy and typically-developing. I wouldn't have believed that my daughter would be born with a heart defect, a balance impairment, deaf/hard-of-hearing, and vision-impaired, among other birth defects she has.
The day before my daughter was born, I thought that NICUs were for other kids.
The day before my daughter was born, I didn't fully know and appreciate the power of prayer.
The day before my daughter was born, I was incomplete. I didn't know it at the time, but having my daughter filled the missing void.
The day before my daughter was born, I had no idea how strong I was. I had no clue the type of mother I would be expected to become. I didn't know I would have to become a therapist, teacher, and advocate as well. I didn't know that I could suffer hearing bad news heaped upon bad news in the NICU and still get through the day. I knew I was an optimist, but I didn't truly know that I would always look for the silver lining.
The day before my daughter was born, I had no concept that some kids don't develop with a little bit of help from their parents. Some children need their parents, physical therapists, occupational therapists, speech therapists, developmental teachers, a team of physician specialists, hearing aids, glasses, walkers, feeding tubes, breathing tubes, and sheer will power to develop.
The day before my daughter was born, I was selfish. Yes, having my son made me less selfish--you can't be a good mother and be totally selfish at the same time---but having my daughter made me put all of my needs and wants aside and focus solely on what was in the best interest of my baby.
Tomorrow I will celebrate the miracle of A's life. Today, I remember the innocent, care-free mother I once was....and know that because of my daughter, I am a much better person today. Thank you, my amazing girl.
June 6, 2010
Bittersweet Updates
Wow, I haven't posted in a week. This past week has been very bittersweet mixed with some good news.
First, A is now in a big-girl bed! She has been in a crib all this time, even though she will be four in a few weeks. Back when we were using her feeding tube, she was on an overnight feed using her Kangaroo pump. Because she was literally connected to it, with a tube going from the machine to the button in her belly, we didn't want her to have a way of getting out of bed. If she had, the whole mic-key button would have come out of her belly, creating a big mess and potentially closing the hole. So, by keeping her in the crib it eliminated the possibility of her climbing out of bed and yanking the tube out.
However, since she hasn't used the feeding tube since last July, and since we are getting the tube removed in 6 WEEKS, it was time to transfer her. Last weekend we went shopping for a twin-sized bed, and were able to bring it home that day. In a few short hours the crib was dissembled, new bedding was bought and washed, and the new bed was put together. She slept in it proudly that night, and every night since. She loves it! It was bittersweet, losing the crib---now the only vestige of babyhood is her diapers---but it was definitely time to get a real bed.
Another bittersweet thing that happened was the school year ended for A (D gets out this week...I'm sure I'll be crying my eyes out on a post about that soon!). Although she was at this school last year in a 2-year old program, this was her first "official" year of preschool. I can't talk highly enough about this school...it is an inclusion program, meaning that most of the kids are typically developing, but they take a few kids with various needs. As I've talked about on this blog before, A isn't quite advanced enough, with her language delay, for a completely typical preschool program like my son attended, but is too cognitively advanced for a special day class. This school was, and still is, such a blessing to us. She has thrived there, and it was very sad to say good-bye to her teachers.
On the good news front, A had two medical appointments, both of which made me very happy. First, she saw her opthomologist. A has bilateral coloboma; she has a small gap on each of her optic nerves. In her left eye she is legally blind; she can (most probably) see some shapes and light, but that is it. However, her opthomologist is very pleased with her right eye! Although she most probably has a field(s) of vision missing (we won't know until she is able to tell us for sure) she otherwise has great vision in that eye! A few months ago A started to wear non-prescription glasses to protect her eye---with one good eye, we can't take any chances.
Finally, we had her yearly visit with her cardiologist, who did an EKG. A has some structural defects, including mild pulmonary stenosis and an aorta that arches to the right. However, her stenosis has not progressed beyond mild, and her cardiologist says she is "heart healthy". Huge sighs of relief here!!!!
All in all, a very good week with my miracle baby. Bittersweet, yes...but for all the right reasons.
First, A is now in a big-girl bed! She has been in a crib all this time, even though she will be four in a few weeks. Back when we were using her feeding tube, she was on an overnight feed using her Kangaroo pump. Because she was literally connected to it, with a tube going from the machine to the button in her belly, we didn't want her to have a way of getting out of bed. If she had, the whole mic-key button would have come out of her belly, creating a big mess and potentially closing the hole. So, by keeping her in the crib it eliminated the possibility of her climbing out of bed and yanking the tube out.
However, since she hasn't used the feeding tube since last July, and since we are getting the tube removed in 6 WEEKS, it was time to transfer her. Last weekend we went shopping for a twin-sized bed, and were able to bring it home that day. In a few short hours the crib was dissembled, new bedding was bought and washed, and the new bed was put together. She slept in it proudly that night, and every night since. She loves it! It was bittersweet, losing the crib---now the only vestige of babyhood is her diapers---but it was definitely time to get a real bed.
Another bittersweet thing that happened was the school year ended for A (D gets out this week...I'm sure I'll be crying my eyes out on a post about that soon!). Although she was at this school last year in a 2-year old program, this was her first "official" year of preschool. I can't talk highly enough about this school...it is an inclusion program, meaning that most of the kids are typically developing, but they take a few kids with various needs. As I've talked about on this blog before, A isn't quite advanced enough, with her language delay, for a completely typical preschool program like my son attended, but is too cognitively advanced for a special day class. This school was, and still is, such a blessing to us. She has thrived there, and it was very sad to say good-bye to her teachers.
On the good news front, A had two medical appointments, both of which made me very happy. First, she saw her opthomologist. A has bilateral coloboma; she has a small gap on each of her optic nerves. In her left eye she is legally blind; she can (most probably) see some shapes and light, but that is it. However, her opthomologist is very pleased with her right eye! Although she most probably has a field(s) of vision missing (we won't know until she is able to tell us for sure) she otherwise has great vision in that eye! A few months ago A started to wear non-prescription glasses to protect her eye---with one good eye, we can't take any chances.
Finally, we had her yearly visit with her cardiologist, who did an EKG. A has some structural defects, including mild pulmonary stenosis and an aorta that arches to the right. However, her stenosis has not progressed beyond mild, and her cardiologist says she is "heart healthy". Huge sighs of relief here!!!!
All in all, a very good week with my miracle baby. Bittersweet, yes...but for all the right reasons.
May 29, 2010
My Spiral Dance
Years ago, I heard a metaphor of a spiral dance. It went like this: you go about living your life, day by day, week by week, year by year. You move along life as though in a circle. When you get to a particular repeating milestone you start the circle all over again. An example of a repeating weekly milestone would be a particular day of the week. More drastic are yearly milestones, such as birthdays, wedding anniversaries, the first day of school. These are events that happen over and over again; we are living life in a circle.
Except that in the spiral dance metaphor, we don't live life in a circle...rather, we live life in a spiral (think of a slinky if you want a good spiral visual!). So when we get to the beginning point again of the circle, we aren't exactly where we started; instead, we are a level higher than before. So while we celebrate our birthdays every year, there was a whole 365 days in between birthdays in which we grew, learned, and changed. The first day of school looks different from kindergarten to 12th grade...the occasion is the same, but with so many "spirals" of circles in between in which we grew by leaps and bounds. An especially poignant example is a 10- or 20-year high school reunion. You're having dinner with the same people that you knew years ago, but boy, have you grown so much since being a squirrelly high schooler with them!
I usually don't take time to reflect on my own spirals, on how much I've grown, which is a shame. I think that such self-reflection is wonderful, and validates human potential. However, this week I had an epiphany of how much I've grown since A was born almost 4 years ago.
After school one day this week, I took my son, D, to Baskin-Robbins. We call such occasions "special time", since A was home with our nurse and it was just the two of us, enjoying one-on-one time. D, as a new 6 year old, loves "special time" with his Mama. And we usually go to get ice-cream, which we both love!
Anyhow, we were sitting in Baskin-Robbins enjoying our sundaes when I had a flashback to coming there when A was only a few months old. A had been in the NICU for 12 weeks, and she was home for 7 weeks before she was readmitted for 4 weeks due to getting a tracheostomy. During those 7 weeks at home, we rarely left the house; I was terrifed she would get sick. We would take D to school and pick him up, and of course go to millions of doctor's appointment, but other than that we were housebound. And even after A got her trach, we stayed in for the most part. I was too nervous...not only about A getting sick, but how was I to handle 2 kids by myself? A was a medically-fragile infant with a tons of medical equipment that needed to be lugged around with us (her suction machine, her Kangaroo feeding pump, not to mention the usual sundry items that any infant needs) and D was a rambunctious 2 year old boy. How could I tend to A's needs while keeping an eye on my son? I was going stir-crazy inside the house, and simply going to doctor's appointments and taking my son to and from school wasn't enough. I just needed to get out someplace different.
The answer was Baskin-Robbins. Soon after coming home from her tracheostomy, I started to take both kids once or twice a week to get ice-cream. Baskin-Robbins was ideal----close to my house, inexpensive, and best of all, it was a small one-room place where my son could run around if he chose, without me having to keep a close eye on him or fear he would get lost. We went there quite a bit during A's first year.
Now, of course, I'm a pro at doing it all by myself. I've taken the kids by myself everywhere from mundane places like mall or supermarket, to exciting places like Sea World or to the San Diego Fair, where we see shows and go on rides. Of course it totally helps when my husband is home, but since J works, he is only home on weekends. I had to break out of my fear in order to have fun with my kids. It also helps that now A is no longer on the Kangaroo pump---even a few years ago we had transitioned to bolus feeds, which were easier to carry. It also helps that as my son gets older he doesn't run off like he used to do. But still.
So, sitting this week in Baskin-Robbins reminded me of my spiral dance---how far I've come in being able to not only adequately, but 100% competently take care of both kids at the same time. A huge milestone in my book, and one I actually reached a few years ago. I'm proud to finally acknowledge it!
Except that in the spiral dance metaphor, we don't live life in a circle...rather, we live life in a spiral (think of a slinky if you want a good spiral visual!). So when we get to the beginning point again of the circle, we aren't exactly where we started; instead, we are a level higher than before. So while we celebrate our birthdays every year, there was a whole 365 days in between birthdays in which we grew, learned, and changed. The first day of school looks different from kindergarten to 12th grade...the occasion is the same, but with so many "spirals" of circles in between in which we grew by leaps and bounds. An especially poignant example is a 10- or 20-year high school reunion. You're having dinner with the same people that you knew years ago, but boy, have you grown so much since being a squirrelly high schooler with them!
I usually don't take time to reflect on my own spirals, on how much I've grown, which is a shame. I think that such self-reflection is wonderful, and validates human potential. However, this week I had an epiphany of how much I've grown since A was born almost 4 years ago.
After school one day this week, I took my son, D, to Baskin-Robbins. We call such occasions "special time", since A was home with our nurse and it was just the two of us, enjoying one-on-one time. D, as a new 6 year old, loves "special time" with his Mama. And we usually go to get ice-cream, which we both love!
Anyhow, we were sitting in Baskin-Robbins enjoying our sundaes when I had a flashback to coming there when A was only a few months old. A had been in the NICU for 12 weeks, and she was home for 7 weeks before she was readmitted for 4 weeks due to getting a tracheostomy. During those 7 weeks at home, we rarely left the house; I was terrifed she would get sick. We would take D to school and pick him up, and of course go to millions of doctor's appointment, but other than that we were housebound. And even after A got her trach, we stayed in for the most part. I was too nervous...not only about A getting sick, but how was I to handle 2 kids by myself? A was a medically-fragile infant with a tons of medical equipment that needed to be lugged around with us (her suction machine, her Kangaroo feeding pump, not to mention the usual sundry items that any infant needs) and D was a rambunctious 2 year old boy. How could I tend to A's needs while keeping an eye on my son? I was going stir-crazy inside the house, and simply going to doctor's appointments and taking my son to and from school wasn't enough. I just needed to get out someplace different.
The answer was Baskin-Robbins. Soon after coming home from her tracheostomy, I started to take both kids once or twice a week to get ice-cream. Baskin-Robbins was ideal----close to my house, inexpensive, and best of all, it was a small one-room place where my son could run around if he chose, without me having to keep a close eye on him or fear he would get lost. We went there quite a bit during A's first year.
Now, of course, I'm a pro at doing it all by myself. I've taken the kids by myself everywhere from mundane places like mall or supermarket, to exciting places like Sea World or to the San Diego Fair, where we see shows and go on rides. Of course it totally helps when my husband is home, but since J works, he is only home on weekends. I had to break out of my fear in order to have fun with my kids. It also helps that now A is no longer on the Kangaroo pump---even a few years ago we had transitioned to bolus feeds, which were easier to carry. It also helps that as my son gets older he doesn't run off like he used to do. But still.
So, sitting this week in Baskin-Robbins reminded me of my spiral dance---how far I've come in being able to not only adequately, but 100% competently take care of both kids at the same time. A huge milestone in my book, and one I actually reached a few years ago. I'm proud to finally acknowledge it!
May 19, 2010
O-U-T spells OUT!!!!!!!!!!!
Today I got the news I've been waiting for: a surgery date for my daughter, A. On July 15, she will go into the O.R. where she will be seen by 3 of her surgeons. Her ENT will do a scope down her tracheostomy to see if she is a "candidate for decannulation" (his words); her GI doctor will do an endoscopy down her esophagus to look for any signs of reflux; and another surgeon will remove her g-tube (feeding tube). She will spend one night in the hospital, to watch for infection after the removal of the tube and the subsequent stitches.
This will be our third summer in a row where the ENT and GI doctors have scoped her in the O.R. Each year I get my hopes up that the ENT will decannulate her, and every year he says that she is not ready yet, that we will look again next year. I still have hopes that this summer will be different, that he will think she's ready to begin the process of taking the breathing tube out, but after our appointment a few weeks ago I really don't have HIGH hopes.
So, I am going to focus on the amazing item on the agenda---she is getting her feeding tube out! Hallelujah! I never thought this day would come!
A has been on a feeding tube since she was 2 days old. After she was born (and before we knew anything was "wrong" with her besides the obvious cleft lip) she lost almost a pound (15 ounces) in the first 2 days. I was desperately trying to nurse her, but she just couldn't nurse due to her vascular ring, which was a blood vessel coming from her heart and wrapped around her esophagus and trachea, making it hard for her to both eat and breathe (and, of course, eventually leading to her getting a trachostomy and feeding tube inserted). She had an NG tube for the first 2 months (which was a feeding tube through her nose) and when she was 2 months old we opted for the g-tube to be inserted in her stomach (otherwise known as a mic-key button).
A was fed exclusively through the feeding tube for the first year. I was determined that, like my son D, she would get my breastmilk for a year, and by golly I DID pump my milk for an entire 12 months for her. I produced so much milk, in fact, that I not only did I feed my daughter for a year but also donated something like 51 liters of milk to a milk bank. When she was almost 6 months old, she began to eat a bit of baby food, with the help of our wonderful occupational therapist. I remember our OT putting some baby food on a washcloth, and A began to suck on the cloth. It was amazing...for the first time my little girl was putting something in her mouth! Little by little, she would eat baby food....eventually she branched out and ate solid food (her initial favorites were bread and blue cheese!)
Of course, it was a long time before things progressed. Soon she began to eat more and more food, but wasn't drinking. We had to continue to use the feeding tube to keep her hydrated. We'd give her bolluses of water throughout the day, and overnight we'd use the feeding pump to slowly dose about 500 cc of Pediasure. I knew if we could only get her to drink, we'd get her off the tube. But she wouldn't drink. I remember her once eating a peanut butter sandwich on a hot day in the summer, and offering her some water; she wouldn't take it. Anyone else would have---the combination of the heat and a sticky sandwich would make most anyone grab a drink! Not my daughter.
Finally, last summer, with the blessing of our OT and nutritionist, we began to withhold water from her. I realized that she was never thirsty....we were constantly giving her water bolluses throughout the day, and therefore she never knew thirst! So we tried different times where I would not give her water when I usually would, hoping to get her thirsty. During these times I would constantly offer her drinks (water, milk, juice, ANYTHING!), so withholding really isn't the right word; I guess the right word would be offering her an alternative. Of course, at the first sign of dehydration I would go ahead and give her water through her tube. We experimented like this several times, each time lasting only a day or two.
Then, on July 18, 2009, we gave her one last water bollus and decided to experiment once again with withholding liquid through the tube and offering it orally instead. This time it worked! Ever since that day, we have not used her t-tube for anything---not for water, Pediasure, medicine, etc. It has been literally unused. For some reason, that day she was ready...and has drank orally ever since. She needs to use a sippy cup with a straw, although we are now working on an open cup and have been having success with the doidy cup. She has been maintaining her weight, and in fact has been gaining weight at the rate she was when she was ON the feeding tube--only this time she is doing it all by herself! And she has not been dehydrated at all, even for a day.
I never though this day would come, but in less than 2 months, A will have the feeding tube removed. It will be 4 years (minus 3 weeks) since she had gotten the g-tube placed, and almost a year to the day since we used the g-tube last. Even if she doesn't get her trach out, this is such a huge accomplishment. A huge reason to celebrate.
This will be our third summer in a row where the ENT and GI doctors have scoped her in the O.R. Each year I get my hopes up that the ENT will decannulate her, and every year he says that she is not ready yet, that we will look again next year. I still have hopes that this summer will be different, that he will think she's ready to begin the process of taking the breathing tube out, but after our appointment a few weeks ago I really don't have HIGH hopes.
So, I am going to focus on the amazing item on the agenda---she is getting her feeding tube out! Hallelujah! I never thought this day would come!
A has been on a feeding tube since she was 2 days old. After she was born (and before we knew anything was "wrong" with her besides the obvious cleft lip) she lost almost a pound (15 ounces) in the first 2 days. I was desperately trying to nurse her, but she just couldn't nurse due to her vascular ring, which was a blood vessel coming from her heart and wrapped around her esophagus and trachea, making it hard for her to both eat and breathe (and, of course, eventually leading to her getting a trachostomy and feeding tube inserted). She had an NG tube for the first 2 months (which was a feeding tube through her nose) and when she was 2 months old we opted for the g-tube to be inserted in her stomach (otherwise known as a mic-key button).
A was fed exclusively through the feeding tube for the first year. I was determined that, like my son D, she would get my breastmilk for a year, and by golly I DID pump my milk for an entire 12 months for her. I produced so much milk, in fact, that I not only did I feed my daughter for a year but also donated something like 51 liters of milk to a milk bank. When she was almost 6 months old, she began to eat a bit of baby food, with the help of our wonderful occupational therapist. I remember our OT putting some baby food on a washcloth, and A began to suck on the cloth. It was amazing...for the first time my little girl was putting something in her mouth! Little by little, she would eat baby food....eventually she branched out and ate solid food (her initial favorites were bread and blue cheese!)
Of course, it was a long time before things progressed. Soon she began to eat more and more food, but wasn't drinking. We had to continue to use the feeding tube to keep her hydrated. We'd give her bolluses of water throughout the day, and overnight we'd use the feeding pump to slowly dose about 500 cc of Pediasure. I knew if we could only get her to drink, we'd get her off the tube. But she wouldn't drink. I remember her once eating a peanut butter sandwich on a hot day in the summer, and offering her some water; she wouldn't take it. Anyone else would have---the combination of the heat and a sticky sandwich would make most anyone grab a drink! Not my daughter.
Finally, last summer, with the blessing of our OT and nutritionist, we began to withhold water from her. I realized that she was never thirsty....we were constantly giving her water bolluses throughout the day, and therefore she never knew thirst! So we tried different times where I would not give her water when I usually would, hoping to get her thirsty. During these times I would constantly offer her drinks (water, milk, juice, ANYTHING!), so withholding really isn't the right word; I guess the right word would be offering her an alternative. Of course, at the first sign of dehydration I would go ahead and give her water through her tube. We experimented like this several times, each time lasting only a day or two.
Then, on July 18, 2009, we gave her one last water bollus and decided to experiment once again with withholding liquid through the tube and offering it orally instead. This time it worked! Ever since that day, we have not used her t-tube for anything---not for water, Pediasure, medicine, etc. It has been literally unused. For some reason, that day she was ready...and has drank orally ever since. She needs to use a sippy cup with a straw, although we are now working on an open cup and have been having success with the doidy cup. She has been maintaining her weight, and in fact has been gaining weight at the rate she was when she was ON the feeding tube--only this time she is doing it all by herself! And she has not been dehydrated at all, even for a day.
I never though this day would come, but in less than 2 months, A will have the feeding tube removed. It will be 4 years (minus 3 weeks) since she had gotten the g-tube placed, and almost a year to the day since we used the g-tube last. Even if she doesn't get her trach out, this is such a huge accomplishment. A huge reason to celebrate.
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