Time Out for a Bit of MAGIC

Yep.  The shirt pretty much sums it up.

Helping Daddy in the Garden

Audrey has had QUITE a month!!! This time, in a good way. In fact I dare say BEST. EVER.  Everyone must have been saying some powerful prayers.  She has been healthy, and happy, and ready to grow.   She has gone from sitting, to bum-scooching, to now almost a true crawling.  She pulls up on people and things to almost a complete stand.  She babbles and giggles and "gets the joke", and even is saying some recognizable "words" like DaDa and NaNa to verbally communicate what she wants.  But best of all, she has been ATTACKING food.  Holding her back from grabbing solid food is like trying to stop a tsunami. She was doing so well that her surgeon even temporarily canceled her acid probe test he had planned for last month.  He still doesn't want to dilate her more aggressively until we evaluate the amount of reflux she is having, and she did need one normal dilation on April 23rd (her tenth), but the time between her required dilations has been getting longer.    In the meantime we have taken full advantage of the opportunity to get outdoors and PLAY, and it seems to be true that laughter and playtime are extraordinary medicine.  With new teeth coming in rapidly, and a huge growth spurt, she has been sleeping a ton and gnawing on stuff.  Awesome as that is, our main problem comes when she actually gets a big chunk of something and it gets stuck in her little wiggly-shaped, tight-in-the-middle esophagus.  Then, it has to come back out.  We learned the hard way that she shouldn't teethe on carrots, and that even something as seemingly innocent as the stem of a banana (she had grabbed a whole banana off the table and was really funny just chewing on it for a minute) can be bad news.    Luckily for our learning curve, she has eventually thrown up everything that could not go all the way down, and we have since learned about these wonderful baby mesh food pouches that have SAVED OUR BACON.  Literally.  She can now chew on bacon, or pizza, or strawberries, to her heart's delight!

 

 On Audrey's birthday, one of her therapists told us about these mesh food strainers for teething babies, and I ran out and bought three of them right away.  You put a portion of whatever the family is eating into the pocket, and they snap together.  As you can see, she highly approves.

WARNING-- BORING PARAGRAPH FOLLOWS.  SKIP TO SEE COOL PHOTOS OF CUTE BABY

The bottom line is, we need to get her dilated all the way open.  Each monthly "maintenance" dilation surgery keeps her hovering around a 28-french opening, which is about one third of an inch or 9.3 mm, and roughly  2/3 of the total width she has available. Her surgeon says that is the point at which the scar begins to give a definite resistance to being spread by the instruments, and he is tremendously careful to avoid risking a tear.  To get her wider, we would have to do the surgeries much more frequently, and/or try some other methods I mentioned in my previous post.  But he does not want to try to get her any wider until he has established that the reason her scar keeps regrowing is not acid reflux.  If it is reflux, he wants to consider surgery for the reflux, because of the dangers of damage to her esophagus from the reflux itself and because the scar will only continue to grow.  So, her eleventh dilation surgery is scheduled for June 1st, and we will do her 24-hour acid probe test at Primary the following week. Poor baby, I am dreading the test because it will involve her having some wires placed down her throat (under anesthesia) that have to come up and out her nose, attached to equipment, and having to stay pretty still for 24 hours as an inpatient up at Primary Children's Medical Center.  But, the results of the probe will be the info we need to see how much reflux she is having.  At the moment I am very worried about what will happen if they recommend the reflux surgery, because she is doing so well and there are huge complications that could result from that surgery in Audrey's case due to the unusual nature of her anatomy. It would take a lot right now to convince me to go forward with it.  But I am trying to remain open to the idea that it may be what is best for her, depending on what we learn in the test.    The surgery is called a Nissen fundoplication  -- where they fasten the stomach in a wrap around the base of the esophagus, putting Audrey at serious risk for a major tear with her ultra-fragile esophagus, which would likely require a huge new surgery called a gastric pullup where they pull the stomach up into the throat... months of recovery, you get the idea, yeah, it isn't pretty, plus they'd need to close in her current G-tube site and give her a new one just in order to do the Nissen, and hers is about as perfect as it gets, plus her stomach is already unusually small -- so worrying about the surgery has spurred me to do all I can to help her be as ready as possible for a successful outcome just in case that IS where we are headed.  One of her AWESOME therapists taught me some tricks to signal the stomach to grow larger, and they appear to be working like a charm!   Thanks to that same therapist, we also learned how to Gavage feed (sometimes called Bolus) Audrey using a gravity-fed system, which has helped us to figure out a better flow rate for her pump.  She is now getting about 5 ounces over the course of 30 minutes, every couple of hours during the day until bedtime, 30 ounces a day.  (No more continuous feed!  No more night feed!  Which also means.... no more early morning blowouts, YAY! Hahahaha!)  That seems to be what her body wants and how quickly it can handle it, but thanks to her stomach getting larger, we are probably going to be seeing those numbers improve even more over the next few weeks to become more like a normal child's meal schedule.  Soooo, that's all for the boring stuff.  Here's the part I'm sure you REALLY wanted to see:

 

Audrey's First Easter

Farewell to my carefree days of super FROO! 

 Audrey is on to me!

And she is making her opinion known!

First Birthday Party

The birthday girl!!!  We had her dilation on Monday, thinking that would be plenty of time for her to recover for the Saturday party-- but when the day arrived, she was very serious and reserved for some reason, even though she'd jut gotten up from her nap.  I was worried at first that she was getting sick, but now I'm convinced it was just part of her growth spurt.  She had also scratched her face under her eye pretty badly at some point during the surgery, but she still looked so sweet in her party dress! This party was a fun project for me, and we had a lovely time. I designed everything to coordinate with her dress.

Our wonderful baker did the party cake to match her dress, inside and out!

Fresh Marshmallow Fondant and berry filling.... heaven!!

 

Our talented friend sketched Audrey soon after she came home from the hospital, in early October. The drawing was too sweet to leave hidden in a book, so I cut it out and put it up for the party. Another dear friend surprised me by decorating one of the hospital breast milk storage bottles with a painted eggshell mosaic rose-- funny, at the end of eight months I was so sick of pumping I thought I would never want to see one of those bottles again, but as time goes on I begin to recognize a very special symbol in it.  It speaks of perseverance, love, and instead of the failure I'd felt at the time, even a triumph of sorts.

We wanted a special cake, smaller, for just our family to enjoy on her actual birthday which was two days after the party, so we requested it at the same time as the party cake and used it as part of the decor. I was very happy with how my impromptu cake tutus turned out. Audrey's name is actually Audrey Rose, so we had to have the rose cake!

Grandma and Grandpa attending Audrey's Birthday party via Skype.

Three of our most very special friends!  Angie and baby Charly, and our wonderful former therapist, Kiley.  Thank you for driving so far to come visit, you sweet ladies!

The BEST part about having just been dilated right before her birthday..... SMASH CAKE!!

She's been saving up all those dreams of chocolate. When the time came, she knew just what to do. Clearly from her expression, it was serious business!

Her Actual Birthday

SPRING BREAK

At our Favorite Family Picnic Spot to see the Amazing Blooming Trees

Getting her first taste of cheesy breadsticks

Riding the Carousel!

Looking at Dinosaurs at the Museum!

Visiting the Tulip Festival!

Not Sleepy at All!

Attending the Groundbreaking for the Rebuilding of a beloved landmark

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: