Waiting, Wondering, and Worrying. Again.

Audrey says, "Hi everyone! Thanks for coming to read about me! It has been a very busy couple of weeks."

AUDREY'S THROAT:

The photos below are from a tiny camera looking down Audrey's throat on 3-19-12; you can see the scar tissue closing it down to a tiny hole which is all the room she has to swallow anything through. This is why she needs minor surgery to dilate her throat every two weeks. I hope someday we'll be able to dilate her all the way back to the wide area you can see that is supposed to be her throat size, so that she can begin to eat like a regular child instead of through a tube into her stomach. For now, she is back to 100% G-tube feeding and I have been a bit discouraged!

Sick, surgery, sick again, waiting for surgery again. That routine is getting old, we are ready for spring! Another child of ours has needed several doctor visits this past month as well, and the nurses at the office are getting to know us pretty well-- they said we deserve a frequent flyer punch card or something. Between the pediatrician's and the specialist I think we usually talk 15 times a week!

Audrey caught a bug right after my last post, and started gagging on her spit again. After exchanging texts, our surgeon took a detour on his way to make his hospital rounds on a Sunday morning, to meet me at his office and examine her to see if the infection was in her lungs. It wasn't, so he decided to dilate her on Monday morning the 19th. Surgery went off without a hitch, but he didn't make much progress on widening the stricture. He has to be so cautious to avoid risking a tear.

Audrey and Daddy on a happy outing during a visit from Grandparents. Our parents and almost all of our family live in other states, so a visit with them is always a special treat!

After recovering from surgery (she usually gags a lot for the first couple of days after), Audrey was happy and herself for about a week and a half, which was really nice because my parents came to visit for a few days! Unfortunately her two year old brother got pretty sick, and I knew it was only a matter of time. Sure enough, Friday evening I went to check on her after a long nap, and her little abdomen was retracting. Recognizing that symptom of lung distress from our first child's horrible asthma ten years ago, I called the pediatrician right away, and that evening she was admitted to the hospital with oxygen saturations in the low 70s. It was heartbreaking in a way-- it was awful to see her so sick, and this weekend is usually one of my favorite times of year, special for our family because we have the whole weekend at home together with no other plans but to enjoy one another and the wonderful uplifting messages of LDS General Conference, and on top of that the weather turned absolutely MAGICAL on Saturday, with mid-seventies weather and the whole world suddenly in bloom. But, I was counting our blessings too. This has been our first overnight hospital stay since she came home in September, and we even got to have her at the hospital close to our home, so that I got to see my husband and my other sweet baby--their visits really cheered up Audrey!

Her big brothers (ages 7 and 9) sent some toys for her to play with, and she loved that too!

Audrey playing with the Angry Bird that her 9 year old brother just barely received for his birthday. It says volumes about his love for her, that he sent it to the hospital for her to play with while she's here.

We were discharged on Monday and sent home with oxygen to help her kick the last of the virus.

One good thing about all of this is that I am learning so much! Both in mind and heart, so much knowledge and so much empathy and love for others. One friend's 12 year old daughter was in the hospital this past weekend with a new diagnosis of diabetes-- it was such a heartbreaking time, but I loved getting to visit her and give her a hug and her daughter a little present, because we were right down the hall from them where Audrey was recovering from RSV. Then I also got to spend an hour on the phone with my dear friend Angie, catching up on her baby Charly Bella! Charly is a miracle micro-preemie baby who was born at about 24 weeks weighing just over a pound, and continues to wow her doctors with her spunk! We used to be neighbors a few years ago, and then last summer we also became neighbors in the NICU--there are no coincidences, right? You can read about her amazing journey at charlybella.blogspot.com. I admire Charly's mom and her blog so much, and wish I could tell you Audrey's story with the flair and heart that Angie has-- because so many of the things that she is feeling, we are too. Much like Charly, Audrey also has a special calmness about her-- a kind of quiet strength that seems to hint at the wisdom of an old soul, and she is so patient with her many tests and doctor visits. It is remarkable, and we are such incredibly lucky moms to have them! Audrey is 11 months old now and like Charly, still sleeps in a bassinette right beside my bed at night. I was so excited to finally set up a pretty crib for her last month, and she now takes naps in her big sister's room!

Audrey still can't eat anything by mouth, and her oral aversion is coming back. All weekend when she was sick, she cried with her mouth tightly shut. I understand that she when does that, it is a way to exert one of the only bits of control that she has. She does it to protect herself, both physically and psychologically, because she can feel when it isn't ok for her to swallow something by mouth-- whether it is because her stricture is too tight to pass things through, or some other reason, so I feel like right now my job is just to listen to her cues. This time it was because of a full stomach. I'm certain her tiny stomach was super full of gunk, because she gagged so hard with just her regular formula that I had to turn down her feeding pump flow rate to almost half what she normally gets, and even then when I gave her her medicine into the tube, she threw it right back up. But hope really does spring eternal. She is smiling again now. When she laughs, she forgets about all the bad stuff, and so do we. When her daddy teases her, she is more likely to reach for things and taste them. When her big brother plays with her, she relaxes and opens her mouth to laugh. I just know that she wants to be normal and eat like her brothers and sister and mom and dad.

Just considering the possibilities of chocolate cake.

It frustrates me so much that her progress has been so slow, even backtracking, the past few months. But I just keep researching and trying to help her in any way I can. I found one article that I am really excited about, where surgeons have injected small doses of steroid directly into the stricture tissue--which is essentially a very thick, fast-growing scar, I think perhaps could be compared to a keloid down in her throat. Anyway, the steroids help soften the scar tissue so that it opens up more easily during dilation and stays open for longer afterward--in fact, the article I found showed that virtually all patients did not need more than one repeat dilation after this series of approximately four closely-spaced treatments. However, when I shared it with the surgeon, he said that his first priority is to assess why she is having the stricture grow back so quickly. Once we have that under control, he is very open to trying it. But he also wants to check to see how long her scar is inside her throat; and if it is not too long, he wants to invite a trusted colleague from Japan to come and try an innovative technique using magnets to push through the scar. In the meantime, he feels our first step is assessing her reflux and figuring out whether that is the cause of her rapid stricture regrowth. So, our next dilation will be done up at Primary, during which he will measure the length of her stricture and we will have an acid probe test (a 24 hr test) to see how often she is refluxing and how much acid is there. It will be particularly interesting, because her dose of Prevacid is already very high. I am nervous because Audrey is a poor candidate for a Nissen Fundoplication (the most common surgical treatment for reflux, which involves basically stapling shut the top of the stomach) because of her small stomach and fragile esophagus, not to mention that Dr Downey said they often have to move the G-tube site in order to perform the surgery, as in, close in the one she has and give her an entirely new one-- so, yeah, I have nightmares about things going horribly wrong and her losing the ability to use her esophagus and stomach. Not to mention the trauma of the major surgery and uncertain outcome, and the worry that if it fails we could end up with a gastric pullup-- yet another huge surgery. Anyway, I am running away with worries and it isn't doing me a bit of good. For now, we are just waiting for information. We would have had her dilation and PH study this week except that she was just released from the hospital on Monday, and the doctors want to wait two weeks to give her lungs time to heal from the RSV. So, waiting, waiting. I'm going to take advantage of the break and play a lot with the babies this next couple of weeks. Yesterday I took the two of them to a fun children's museum-- I know it might sound a little crazy, but trust me, I had thought it through (we went at the start of the day so fewer germs, and Audrey stayed in the stroller plus I washed and sanitized her brother's hands after he touched things-- and part of me says, hey, we've already had RSV. It's going to be ok.) At some point we have to live again. It was a great day, and I am so glad we went.

I don't mean to make these posts so long, but our lives are so busy and there is so much happening with Audrey that it is hard for me to write more often than I do, so if you have stuck with me this far (thank you!), I want to reward you with one last lovely thing.

My parents were so great and patient with my stressed grumpy self this past week, and helped a ton with the household and children. But they really stunned us when my mother presented us with one particularly beautiful gift. We have four other children, and for each of them she has made a miniature scrapbook to chronicle their "firsts," bath, haircut and so forth-- and each book is a unique and precious treasure. But of course, Audrey's firsts have been so different from her siblings-- she couldn't have the same book as they do, quite, but my mother found a way to do it anyway. Justin and I both blinked back tears as we looked through its pages, realizing how far we've come in the past year. Audrey's birthday is coming up this month already! Here are the book pages Mom has completed so far:

Tricks of the Trained

Oy! Enough doom and gloom! It's a whopping 70 degrees outside, gorgeous sunshine, and (thanks to yesterday's blog vent) the Ides of March are firmly behind us. I want to share with you some of our new tricks.

Audrey now sits confidently, and is getting close to being able to pull herself into a sitting position. But she would much rather STAND-- those little strong legs do not want to bend when we put her down. If we hold her hands while she's standing, she'll even walk a little. Then, it was the cutest thing when a week or so ago she started waving at us, rotating her wrist like a princess on a float. And she says she's also ready to drive.

Another one of her favorite tricks is splashing in the tub. She got to go in a hot tub for the first time last weekend, and she loved it. I only let her put her legs in but she leaned over as hard as she could in order to splash in the water. See her cute swimsuit? Aww. It even has a tutu. Tell me you're shocked.

Actually, one of her tricks that has charmed us the most is her new habit of sucking on her blankie to self-soothe. With a regular baby that would be no big deal, but for someone who has hated having things in her mouth as much as she has-- it's nothing short of awesome. I caught her on camera as she was sitting upright and sucking on her blankie falling asleep. She kept almost falling over, and then righted herself, 99% asleep and just that tiny bit awake to keep herself from falling over. I could barely keep from laughing out loud and spoiling the moment.



I have a few tricks to show off too. Her uber-sensitive skin has had SO MANY problems that I've been trying from day 1 to avoid putting tape on her skin, but her G-tube and gauze has to be secured somehow. I am proud of the little system I came up with to get around the need to tape stuff down to her skin. Here we are: first, instead of taping the gauze to her skin, I tape it shut on itself. Comme ca--


Then, I had to come up with a way to secure the tube so that it wouldn't pull out anytime someone accidentally yanked on it. This was a trickier trick to be sure, but here's our (now tried and true) method that has prevented many an accident:
That's no casual safety pinning job you see there, however effortless it may appear. This puppy employs physics, I tell you! First, I put a firm piece of Mefix tape on the tube itself, about six inches from the button to give it some extra "give" if it was yanked really hard, then use a STRONG AND LARGE safety pin and pin it to the thickest part of the diaper (while my hand is between the diaper and her skin to protect her from pokes). I am careful to give the distance between the pin and the button a good amount of slack, that way, if the tube is tugged hard, the tension is not transferred to pulling on the button. See?
Yet another disaster averted. All in a day's work.


Also ran across a great website of G-tube tips and tricks discovered by other moms-- I have yet to read them all, but we immediately latched onto the butterknife trick for cleaning the gunk out of extensions! After the initial rinse, we just scrape the back side of a butterknife along the length of the tube, and it gets any last stuff off the sides lickety split. Works like a charm. I can hardly wait to see what other gems are waiting on this site:

http://hydranencephaly.com/Care/tipsandtricks.htm

We also figured out a great trick for getting excellent results from her esophagrams. Since the oral ingestion of "pretend pudding" or barium drink from a bottle or cup is traumatizing for Audrey and has caused her to aspirate, we have found much greater success with inserting a thin NG tube down her nose to her throat just to the point above her stricture, and squirt liquid contrast down through it. We have used Isovue for the past two esophagrams, a non-barium contrast that is safer in the case of aspiration.


Last of all, but probably best-- a few weeks ago we finally captured a little clip of her first laughs. (Warning. If super cutesy baby talk makes you gag, you'll probably want to skip this one.) We were going for a new all-time "giggle record" for Audrey. Hahahah!
Enjoy!

Developing Negatives

Well, sometimes a misdiagnosis can be a blessing in disguise, I suppose. This has been a super tough blog entry to man up and write.

She really did have a leak in her esophagus. (See that funky vulture beak shape off to the side of her throat in the x-ray? That's it.)

But, we got to take her home anyway, and she got three days of Clindamycin (a heavy duty antibiotic--intended for the aspiration pneumonia she apparently did not have), a lot of Tylenol, and a lot of sleep. But our poor, poor baby was just not herself. So lethargic and unresponsive, and the reflux was unbelievable. Every few minutes it was like her whole gut would just cramp down and twist her like a dishrag-- squeezing wet stuff out both ends. I was on the phone waiting twenty minutes for my turn to make an appointment with the pediatrician (for the required ER followup) first thing on Monday morning, when her surgeon Dr Downey called me. I was so surprised because I thought he was still on vacation, but he said he'd been reviewing her file all morning (this was about 8:20 am) and wanted us to come in for tests and a chat as soon as possible. He said there was no doubt from the fluoroscopy images; she definitely had a leak, and depending on how it was progressing she might need to be admitted for a couple of weeks to receive picc line antibiotics.

Packed my two year old to visit the babysitter, and Audrey and I packed off to visit the lab. Her little veins were so scarred from the ER visit (it had taken them five tries and an hour to get a little blood over the weekend, plus the surgery from the previous Friday had used some for IV attempts), that I was dreading the blood work more than anything. But we were blessed to have a fantastic staff at the lab that morning, with compassionate and experienced techs to get us through. Audrey gave them exactly the blood they needed for the test, and not a drop more, on only the second try. In fact, the blood stopped flowing just shy of what they needed, and I quietly pleaded with her for just a little more, and she looked at me so intently with her eyes as if to say, ok mommy, but only because you asked so nicely--and then exactly the last few drops they needed seemed to eke out then with her permission, counted drop by drop like precious coins.

Two hours later the surgeon and I wrapped up our visit, and we went on our way with lighter hearts. The images he'd shown me were amazing--there was no possible way the doctors could have misread that fluoroscopy up at Primary. Why didn't they tell us she had a leak? Maybe the report got lost in the shuffle? Maybe they just didn't want us to freak out because Dr Downey was going to be back so soon and it would be better for us if he handled it -- that seems unlikely, but it was the happy end result. Because yes, we would have totally freaked, and so would the hospital. I am sure they wouldn't have let her come home. But, the lab results were encouraging-- Audrey's infection was responding well to the Clindamycin, which also meant the leak had stopped. After consulting the hospital pharmacist, he switched her from Clindamycin to Metronidazole so that he could add a drop of Erythromycin to her daily meds to aid motility (help the stomach empty faster) to help with reflux, (because apparently there would have been an interaction with the other two, and) because he feels it's the reflux making her stricture clamp down again so quickly after dilation. We left with a "watch and see" plan that was easy to live with.

The next morning Audrey had her monthly visit from her home therapists.  They listened to our crazy tale and saw how sick she still was, and one thing they said was to watch for diarrhea with mucous or blood in it, because Clindamycin was famous for causing a nasty bacterial infection called C-diff. Audrey was already having terrible diarrhea that was burning her poor tushy, and after a couple more days I finally called the surgeon on call to ask if we had been on the antibiotic for long enough that she could stop-- because she was actually crying with pain now when I would plunge the med into the G-tube--SO SAD. Luckily, it had been long enough and we were ok to stop. The diarrhea stopped within a couple of days, then came back with a vengeance a week later, but my true worries came when I started seeing mucous in the stool. C-diff is pretty nasty stuff from what I read, and can be really dangerous. I took her in to the pediatrician, all stressed out, only to have her perk up and be happy and cutesy for the doctor visit! He recommended some probiotics and to my great relief, in just two days, they worked! The reflux finally stopped too, and suddenly, it was like the calm after the storm-- leaving me with that bewildered feeling like, well let's get back to normal life already, why are we so behind on everything? We snuck in the quick chance during those short healthy days to take the family on a mini vacation to Zion National Park. During which I came down with the NASTIEST virus, courtesy of my second grader (who managed to sleep it off in about a day and a half, which may explain why I got it so horribly bad--because moms just can't do that, although my husband was a huge wonderful help). Fever, chills, aches, and oh the horrible coughing and sneezing! I am genuinely afraid for Audrey to be coming down with this, but yet, she is smiling and happy. Her nose runs, she has a little cough, and she has started spitting up her own saliva again, but all she's really managed to need is a priesthood blessing and some Tylenol so far. I thought we'd never make it to Friday, and here it is already-- a month since her last dilation, and I think we'll make it just fine to Monday when Dr Downey wants to do her next one.

So, exactly why was that so hard to write? Well... here's the thing. When her (major) surgery was done in August, as you may recall the repair was extremely tight, and they were working with unnaturally fragile tissues already in her "blind pouches." Partly because of that tight strain, her stomach is now bent out of shape, increasing her reflux and putting further strain on the unnatural esophagus. All of these things mean that she is delicate in there and could tear when they do the stretching-- it just hadn't happened before. Now that it has, it could happen again. And worse, he said if it tears badly, they would have to abandon the esophagus, go back in and do a gastric pullup. In other words, another major surgery akin to August 8, this time with a intentional hiatal hernia and pulling the stomach up into her throat. So, we are treading on thin ice. He was debating whether to even do another dilation, because she is so fragile in there--or whether to consider trying an alternate method of keeping her throat from tightening down with that scar tissue. He researched the innovative idea of using a stent designed for keeping airways open, but ultimately abandoned the idea because studies found that they became easily dislodged and then became stuck in wrong positions. Now we are back to anticipating the next dilation, with more nerves than before, and hoping that the erythromycin will help her milk empty out of her stomach faster. (I hope you checked out the image at the top-- it is so amazing, you can totally see how her stomach is small and round instead of the normal oblong kidney-ish shape of a regular person. You can also see the leak at the top left-- it looks like a side pouch, well, it IS a side pouch, because that's what the leak does to the esophagus, creates a protective membrane as soon as possible to contain the leak, in whatever shape it has to. Fortunately in her case, somehow her throat closed that pouch back in and gave her a more straight line again. It doesn't always happen, I've heard.) Anyway, Dr D went through a sort of Plan A, Plan B, Plan C, and so on list, of lines of defense we will try, ideas to implement, as we try to avoid the drastic alternatives should her esophagus fail. Meanwhile, she is still 100% G tube fed, but boy does this baby want food to try putting in her mouth (check out her first taste of bacon--she sucked on that thing like it was never to be allowed out of her mouth aGAIN). Maybe this dilation will be the one to get her there. But meanwhile I have been processing the news that she might need another major surgery, and trying to regroup and find my courage and hope again. He hasn't given up. She certainly hasn't given up. So, I guess it's time for me to man the heck up too. The best bacon is yet to come, right?

"In the Depths of Winter, I Found There Was Within Me an Invincible Summer" -A. Camus

All set in her hospital jammies for dilation #7, Friday 2-10-12

Crinkling a paper bag and excited to see Mommy arrive!

Audrey's seventh dilation surgery yesterday went reasonably well-- and since our surgeon Dr Downey is in Hawaii for a month, Dr Meyers did it for us. She opened her to only a 26 (instead of a 30 like he did last time) because it started to bleed, and left the dilator in her throat for 45 minutes instead of the typical 10, hoping that it might help keep her open longer. She says that the bleeding is normal, it is just an indicator of when to stop stretching. She also gave us a new prescription for Prevacid in order to increase our dose accounting for age increase--- which I was excited about because it could mean less problems for Audrey, except that, once we were home, I realized that the prescription is actually a lower dose than what we already have. So, something somewhere was wrong. I'm trying to figure that out. In the meantime, Audrey is having worse complications from the surgery than we've seen before. Retching and a fever of 101.5 all night in addition to the normal fussiness. It's been a long night.

Even though I just wrote a long post yesterday (for the first time in months), I remembered some more fairly major details I wanted to share about stuff we've learned in the past couple of months. When we were starting to see progress on overcoming oral aversion, she really loved the breast milk from the bottle. I had dreamed of breastfeeding Audrey when she was finally allowed to have milk by mouth, and she did suckle a little for comfort, but in the end, really drinking that way was more than her little mouth muscles were ready for. Just feeling her love for me though, helped make it o.k. Much harder was the realization that I could not go on pumping every three or four hours, and take care of all that needed to be done once school started for the kids and I no longer had our babysitter all day at our home to help with my toddler and house chores. I struggled and wrestled with it, but by the end of December, it was time to accept that moving on from that was best. Well, best for me, and best for the rest of the family. Audrey still preferred breast milk strongly, and to complicate things, in the course of my wanting to find alternatives that were safe for her to eat (since the Nutramigen she gets by G-tube tastes nasty but she had had major digestive issues with the other formulas we'd tried in the hospital) I had her blood tested for food allergies, and we learned that she really is allergic to milk. Not to soy, nor anything else, but definitely to milk. Soooo.... that complicated things a bit. My self-imposed mostly-dairy-free diet for her sake had made the breast milk safe, but... yeah. So, we tried two different soy formulas, and she not only rejected them both, she refused trying bottles at all after that for a bit. We finally had some success with straight soy milk. (Of course, one nurse had to say something about being worried about toxins in soy causing cancer or some such horror. Guess I didn't have enough to worry about.) What. A. Mess. So, guilt about stopping pumping. Big time. But at least my husband is supportive. He has been the biggest champion for the pumping, seriously, as in-- to obnoxious levels at times, shooing me to go pump even when I loathed the thing. But he recognized how intensely stressful it was for me lately trying to manage it, and gave his blessing to the segue. After eight and a half months, it's both very sad and very good to be done.

And sad. And good.


.....guilt. Major guilt.

And major relief.

Hmmm let me think, happy stuff to report? Oh yeah, I forgot! We've had the mildest winter in memory this year... which is really good news for preventing RSV. Some days even short sleeves in January and February. Maybe the thick snow and ice will still come; it's happened before starting late February and lasting far into May. But it's been really nice, and Audrey loves the outdoors so the chance to be out is magical to her. We even had two outdoor hot dog/marshmallow roasts in our backyard--a favorite activity for our fam. In January it was a "snowman roast" with snowman-shaped marshmallows, and that time there really was a decent amount of snow on the ground. (Going to have to make that Snowman Roast an annual tradition I think! The winter & snow didn't bother us much with the heat of the fire, and it made for a really fun change.)

Gotta love that orange Cheetos grin on my oldest.

Then last Sunday we did it again, this time with big heart-shaped marshmallows. I think Audrey was sleeping during the first one, but this time she joined us, and Justin even taught her how to make s'mores.

She got pretty good.

Daddy even let her taste a lick or two.

And then today, Audrey's fever broke early in the afternoon so she was able to attend a little 1st birthday party she had been invited to. She got dolled up with plenty of froo, and she enjoyed the party for about fifteen minutes before beginning to feel sick again. But, it was a cute fifteen minutes. She fell asleep in my arms after that... here's a photo that sort of shows her cute outfit. Her t-shirt says, "I'm the Rock Star of the Family"

Soooo.... back to the present.
Just got off the phone, and the surgeon wants to have her x-rayed to make sure she doesn't have a perforation (tear in the esophagus), so Justin is driving her to the E.R. up at Primary while I'll stay home this time to take care of the other four. (It was a tough choice, we both wanted to go and both wanted to stay-- but after a discussion and a couples prayer, we decided that his safer night driving and beefy arms that are great for babies to sleep in, were the better choice.) So, the story. We thought her fever had broken today, but it came back. Despite round the clock Tylenol it had been 101.5 last night, and this evening I clocked her at 100 between doses. The temperature should not have continued into this evening if it was a reaction to the anesthesia. She'll be checked for pneumonia and a tear, and if she needs to be admitted she'll be right there. Here's my take on how this could play out, based on what I was told over the phone by Dr. Gill (who was taking calls for Dr Meyers today). If it is pneumonia (caused by breathing in her own spit and the barium), she'll be given antibiotics and released. (Except, Dr Meyers checked her for that yesterday and thought her lungs sounded good.) If both x-rays come back negative, Audrey will probably be released with the probable cause being some other reaction to the surgery or a virus-- a pretty big coincidence, if she was coming down with a virus right now, but possible. If it is a minor tear, they'll treat aggressively with inpatient antibiotics and monitoring to help it heal on its own. If it is a major tear, she would require another major open-chest surgery to repair it. The on-call surgeon today is Dr. Black, whom you may remember we have worked with before. Dr. Downey returns to work on Wednesday I think. Breathe in, breathe out. Maybe it's just an ear infection. Justin did just call too, and said that the most recent Tylenol dose put her back into her chirpy self. Hahah... I hope he's right that they're going to laugh her right out of there.

************************************
UPDATE: 11:20 p.m.

Oh, my goodness. No one was ever so happy to learn that their baby has pneumonia! Looks like we can get some antibiotics and bring her home tonight. It's amazing. She sounded good when everyone listened to her, but the x-ray clearly showed a lot of fluid in her lungs. I know, bizarre and twisted as this sounds, but what... wonderful news. When he called and told me, I could hear her babbling loudly in the background, talking to Curious George as she watched the cartoon on Justin's new tablet. Holy cuteness. I so needed that! And then he held up the phone on speaker and let me talk to her, and said he wished we had a video connection because she was grinning and reaching for the phone and so excited to hear my voice. Awwwww.... my baby probably comes home tonight!

Getting used to our new "P.A." System

I know it has been forever since I've posted, I'm sorry! The holidays really ambushed me, but Princess Audrey has continued to grow and shine! We are finally getting into something of a routine. When her first round of four dilations were completed, I had kind of thought we would just go back in every month or two to maintain her open esophagus, and it would be no big deal. But I learned quickly that each day is like a world unto itself-- for the first few days after a dilation, it was easy to forget our troubles. I'd start to resume what used to be our normal routine; getting together with friends, doing normal activities, she'd be making great progress on learning to eat by mouth... and then bam!, she'd start doing something to let us know that she needed to go in again, like choking on her own saliva. We'd go in for surgery again, and resume life, and then much too soon she was needing it again. It appears this will be our system for a while.

After her vocal chord was declared healed in November, she completed her first closely-spaced round of esophagus dilations and we began to work in earnest to overcome her oral aversion. Finally we began to have some big breakthroughs. All that sitting up at the table with us and watching her toddler brother had really been sinking in!

December 1 Facebook Update:
You'll never guess who just drank 3/4 of an ounce from a SIPPY CUP like a regular baby. In lots of little sips, but the stuff went down, and stayed down. And then just to prove how awesome she really is, she rolled from her back to her tummy. :)

Just seeing her put her fingers in her mouth in this picture was a really big deal. For so long, she had had no control over the awful things being forced into her mouth and throat, that clamping her lips tight was a defense mechanism-- for months she even cried with her mouth closed. But as you can see, that has been healing in exciting leaps and bounds!


December 4 FB Update (written by Justin):
Two days ago, Audrey was reclined in her bouncy seat and Gideon stuck a sippy cup with (cooled) hot chocolate in her mouth and to our surprise she took a drink without complaining or gagging. (Audrey often stares at her baby brother when he eats and keeps a close eye on his sippy cups.) Susie didn't say anything and just watched. A moment later Gideon put a blanket on Audrey's chest and propped the sippy cup in her mouth and walked off. Audrey let the cup stay in her mouth and took a few drinks. Who needs to pay for a doctor to teacher Audrey how to eat? It seems her 23 month old brother has things well in hand. Since then, Audrey has drunk an ounce of milk several times and she appears to be asking for the drinks.



Dec 8 FB Update:
Poor baby is choking on her spit again and everything coming up again.... wow, a month like clockwork, as predicted. Back to the hospital for a dilation in the morning, this time for the first time we get to go to our own local hospital instead of driving an hour away!

Dec 9 FB Update:
Everything went smoothly today, Justin even got pics from the surgeon's scope of her stenosis. (It's amazing to see how convoluted and kinky her throat shape is-- ugh, poor girl!) Audrey woke up from the anesthesia sucking her thumb and rubbing her fuzzy head to self comfort-- both new tricks in the past week. After attacking about a half ounce from a sippy cup, she just drank about two ounces of mom's milk from a bottle.... first time ever accepting a bottle. Yeah, life is better. :)



Dec 21 Facebook Update:
It's been one of those "Insanity Mom" kind of weeks, and it's only Wednesday. On Monday night, Audrey's little headcold turned into pneumonia and we had to take her to the ER. She's doing much better now, but spooked us last night with throwing up her own spit again--something she usually only does when she needs a dilation. Yeah you're right, she just did that like... two weeks ago? Three weeks on the west coast would not go very well if she was already at that point, so the surgeon is doing another dilation surgery (under anesthesia) at the hospital just to help us get through. Then, we got the whopping bill for our home health company stuff so far-- they are billing it as though they are making a home visit every single day, and the per diem is the same as our daily copay, so a dozen phone calls later we are working with the insurance to perhaps buy our own pump and supplies. Eeesh. Oh, and it's Christmas week. School programs, gifts for teachers, wrapping and last shopping, packing for Grandma's, letters and photos and cards printed and assembled.... and fussy babies, whining kids. Good thing there's all the sweet stuff in there too, like reading my favorite Christmas storybooks to all of the kids around the fire. And Grandmas to look forward to still. And thanks to home health we met our deductible, so all of our medicines and doctor stuff for the rest of the month are free. Yaaay. *collapse*

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Well, the doctors didn't want to dilate her before we left for our big trip to Grandma's for Christmas because intubation could aggravate her little case of pneumonia. She had been doing so well at the bottles, and then suddenly it started coming back up-- not as though she was emptying her stomach, but just, well, regurgitating the contents of her throat after about a minute. Strange, frustrating, and sad. But, we knew we could always fall back on just giving her G-tube milk, so we went ahead with the plan to visit Grandmas over the course of three weeks. Lots of driving, lots of craziness, and in spite of all of us passing the flu around it was a wonderful visit!

Audrey got her first visit to the beach. She told us that was coo!

Met three of her great grandparents for the first time, and a bunch of her cousins. This too was coo.

And to my surprise, she handled the long car trip really well. Of course, it helped that we let her take the wheel for part of it. And a silly big brother next to her in the car made a big difference too.

We weren't too surprised when she started being unable to swallow her bottles toward the end of the first week at Grandma's, but it was still sad and frustrating to tell her no when she finally was asking for them! We needed to get her established with some doctors out near Grandma's house for when she visits in the future anyway, so we went ahead and called around to figure out where to go. We were a little surprised to learn that it was actually best to take her in to the emergency room at the children's hospital, because otherwise there was just no way we could get in for an appointment or swallow study. So, we took one of our precious days with grandma, and spent it in the ER instead. At first when they planned to dilate her, they told us they were going to keep her overnight for observation. But after a barium swallow study and a couple of calls to Dr Downey, their surgeons determined that we should just stop feeding her by mouth until we got home, and dilate her right after getting home. They felt it wasn't worth the risk of possibly damaging her esophagus, and would rather have her home surgeon handle things. So, we did as they said. It went fine; the only bad part was that Audrey would cry and reach for drinks and we couldn't give her any. On January 9, after the trip, after the dilation, Dr D told Justin that when he got in there to dilate her, she actually hadn't seemed that closed. That seemed so strange to us, based on what we had observed. But we went forward with re-introducing the bottles. She had backtracked a little and needed to get used to them again, but within a little while she was enjoying them again. And then it seemed like just a few days later, BAM it all started up again. This time I was a little overwhelmed with other stuff happening in our life (among other fun, our 8 year old was just diagnosed with a heart defect), our surgeon was on vacation for three weeks, and we just weren't sure about ourselves after the last time when Dr D had said she wasn't actually that shut.... and we began to second guess ourselves. Could there be another reason for her milk coming back up? Could she have swallowed a little bit of paper or something that was blocking her up? We tested it again and sure enough, nothing could stay down. It was simplest just to stop giving her bottles again for a couple of weeks until Dr D got back. But poor Audrey, she let us know that that was NOT coo. She wants food, and she wants it bad. So I finally made some phone calls and ended up driving her to a swallow study early yesterday morning.

The outpatient clinic where we went for the study had a great playroom in the waiting area. Audrey is becoming stronger at sitting--still not super confident but more so every day--so I tried putting her in the little car and to my surprise she grabbed the little steering wheel and held on tight while I wheeled her all over the room, it was SOOOO cute!

February 8 FB update:

Today is a special date for our family. Today at last, baby Audrey has lived at home longer than she lived at the hospital. Although I had hoped to make it a special day of celebrating for her, we'll have to look forward to that after Friday's dilation surgery. She had a traumatic swallow study this morning, where she was forced to drink barium dye beyond the point when she knew she could manage it. It was pretty terrifying for her and hard to see that look her eyes as she asked me why I was helping the doctors instead of her. Amazing but tough to watch the monitor as the stuff pooled in her throat and went into her lungs as she freaked. Sometimes maternal empathy is a rough bag. Once her throat is open again, she's getting her first chocolate pudding.

Audrey aspirated because she refused to take any more barium, and clamped her lips shut as they tried to give her more, and started to cry, then when she opened her lips to gasp for air, they poured barium in. Yeah. We would have too in that case. The thing that worried them was that she didn't start to cough, in order to clear her lungs. It implies that her reflux has desensitized her defensive mechanisms; the therapist inferred that her Prevacid dose may need to be upped. She's probably right; the dose hasn't ever been adjusted. The dilation surgery will stop most of the pooling and enable her to swallow completely. The past two weeks she has been able to swallow, but then within a couple of minutes almost all of it comes back up... but with nothing from the stomach, if that makes any sense. Not to be gross, but she has been throwing up saliva. The pooling is a lot like an over-full funnel, with a neck that tightens down smaller and smaller over a couple of weeks. the first part she took was pudding, and when it sat there in her throat they wanted to see if they could help it go down by adding liquid. I tried to say it wouldn't help, but they insisted on trying. It was part of the test, and told them more information when they saw her reaction. She slept deeply in her nap that afternoon, and it broke my heart when I saw her having a nightmare (breathing fast in and out as if crying), probably about the test. Her lungs seem to be fine. But.... she is happy and chirpy today. The therapist wanted me to see a GastroEnterologist in addition to our surgeon, to evaluate any swallowing disfunction. I'm not convinced that will help much, but we'll discuss it with Dr D when he gets back. We are going in for another dilation tomorrow-- let's hope we can start getting to the bottom of the mystery for why this is happening so quickly. It would be so wonderful if it was a simple matter of upping her Prevacid!

That's all I have time for for now.... wish it was more witty or eloquent, but I'm kind of in survival mode for the moment and my creativity is feeling pretty depleted. I promise I'll try to do better about keeping the blog updated so it isn't so much info at once. You are all wonderful and your prayers and continued encouragement mean so much to us!