The Sounds of Reflux

I know that sound.  It comes, now, with every breath.  It sounds like congestion, but there's no runny nose.  There's no cough. It's as if something is hanging in the back of Lily's nasal passages, but no matter how much we suction or spray, we get nothing.


I know that sneeze.  It is a wet, sloppy sneeze.  A warning.  It usually comes either while we're feeding Lily or soon after, and it means there probably will be vomiting.  It is the sneeze that, when I hear it at night, I either jump out of bed and run to hers or I hold my breath and wait to see if there's any other sound that might indicate this little girl needs her mommy.


I know that cry.  It is one of pain from the burning of the gastric acids oozing up her esophagus or the trauma from vomiting.  Here lately, there's also been a tinge of frustration added to it, one that says, "Why does this have to happen to me, Mommy?"


And I know that silence.  It comes between breaths when she sleeps, more frequently now that the reflux is back.  It is always followed by three or four strong, fast breaths, those that always want to catch up from the few that were missed.  It is called apnea, and it is aggravated by the reflux.  It can also cause pulmonary hypertension.  Not something to be taken lightly.


I know these sounds, even though I haven't heard them for over a month and a half.  They echo and haunt our house, rather unnecessarily, and they burn through my soul.  All of these sounds could be avoided with medicine.  But our insurance company has created this process that people must go through before they will approve such medicine.  To me, it's an unnecessary process because the generic (that they were willing to pay for) isn't being made anymore.  It just makes sense to me that if the generic isn't being made, an option should be the brand name, especially if the doctor has requested it.  Instead, Lily has been waiting over a week and a half for the brand name to be approved.  And that's why all of these sounds are back.    


***Lily has vomited for the past two days.  This morning, it was out of both of her nostrils and running down her mouth, and she was crying and had this pained look on her face.  It took every ounce of strength that I had not to take a picture of her, but after listening to her cry and watching her jerk back, I told her that if it happens again, I'm taking a picture and posting it everywhere I can think of.  I'm sending it to the newspaper and the insurance company along with whatever type of letter it takes to get someone's attention.  I wanted to call and scream at whoever answered the phone, "Do you hear what your process is doing to my child!?!"  I'm so. very. angry. over this.  To the point where I think I need prayers for peace of mind.  It's just very hard when this happens to your own child.***

Lily's Medication

I was asked the other day what medication Lily was on.  I thought, instead of emailing the person directly, that I would post the list of her medication and some trouble that we've had with it along the way.


Miralax:  Dave gives Lily this in the morning while he's getting ready to go to work.  She gets 1 teaspoon mixed in 4 ounces of water.  This helps with Lily's constipation.


Erythromicin:  (Not sure I spelled this one correctly.)  Lily gets 1 ml of this before she has her formula.  Every time.  We had a time with this one at the pharmacy.  The generic version was on backorder at the pharmacy we go to, so I had to go downtown to the hospital pharmacy to pick up this one.  Not very convenient, unless Lily had an appointment there.  But now the pharmacy down the road has it, so we can get it from there.  The weird thing is that the medicine we got from the pharmacy was white and didn't have to be refrigerated, nor did it expire.  The medicine from the closer pharmacy is pink, has to be refrigerate, and only lasts for ten days.  I think I'd rather get the medicine from the hospital pharmacy, even though time/distance-wise it's a little more inconvenient.  Lily takes this because her stomach empties slowly, which can cause vomiting and reflux.


Zantac:  Lily gets 2 teaspoons of this at her first feeding and her last feeding.  This helps with reflux.  When she first started this, she was on it for only two weeks.  After we stopped all of her medicine and realized she needed to back on it all, we came back to the Zantac (generic version of it) and have stayed on it this time.  Whereas last time Lily's vomiting was sporadic, this time, it's been quite under control.  Lily takes this medicine for reflux.


Prevacid:  UGH!!!  This medicine has been the biggest headache for us!  At first, Lily was on the generic solutab version of this.  I'd put it in a medicine dropper, pull up water, and then put it in her g-tube.  Easy enough, although one time it did clog her tube, and I had to do a tube switch here at home by myself.  (Not something I'm a big fan of doing, but at least I can do it.)  Now, however, the generic version does not exist.  INSURANCE--one of the biggest, greediest, I'll-pretend-I'm-helping-you-while-I-really-rip-you-off entities out there--(sorry, can you tell I've been a round or two with them?)--won't approve the brand name because it just so happens to cost $200 for a thirty day supply (I was also told it costs $600, but I didn't want eyeballs to pop out.)  So while I'm waiting. . .and waiting. . .on a prior authorization (which is the BIGGEST joke because why can't the insurance company see that the doctor prescribed it in the first place for a REASON!!)  (Oh, we've had the same run-in with Xopenex--which isn't supposed to increase heartrate, but is more expensive, and Albuterol, which causes high heartrate (Lily's heartrate generally runs high, she doesn't need a medicine that makes it worse.)  But I digress, the prior authorization hasn't been approved, so we're giving Lily over-the-counter capsules that we have to break open and give via water.  Problem is, the little tiny balls get stuck in the medicine dropper and in her extension tube, so she's not completely able to get this medicine.  It just bothers me because she's been doing so well, and I'm so afraid she's going to revert back to the vomiting.  Lily gets this medicine once a day.  


Nasonex:  I'll admit that I'm bad with this medicine.  I don't always give it to Lily because I just can't stand to think that she's on so much medicine.  This is more for her allergies, which haven't seemed to be acting up, so I've not felt the need to give it to her.  A nurse did tell me that a good way to handle it is to give it on three months, off three months:  March - May and Sept. - Nov.  (I think those are the months she said.  Anyway, the allergy-season months.)  


Poly-Vi-Sol with Iron:  Not a medicine, but a vitamin.  Lily's hemoglobin came back low at one of her appointments, so she was put on that.  One ml once a day.


There you have it.  Those are Lily's medicines.  We wish she didn't have to be on so many, but if it makes her systems work, they're better for her.  I know that, compared to other children with her condition, it's not a whole lot, and for that I'm thankful, but like I said, I wish she didn't have to be on any.  Sorry about my bitterness with insurance.  I'm grateful that we have it, no doubt, but they are out there to make a profit, and when money gets in the way of making decisions about people's health, I just have trouble accepting that.  Big trouble!


Lily's on the floor going c.r.a.z.y. right now.  She's so happy and rolling back and forth and beating her arms like she's playing the drums.  I think she needs a little stimulation before bedtime.  :)

My Dream

The other day, I read this post about a little boy who recently passed away.  His name is Tripp.  Tripp had a condition called Junctional Epidermolysis Bullosa, where the skin forms blisters with any type of friction.  It was heartbreaking to read his mother's story, to see the struggle he went through on a daily basis.  What was even more heartbreaking was that when he passed away, he was two and a half years old.  (In the pictures I saw, he looked to be about fourteen months old.)  I cannot fathom the pain he must have gone through--the pain his mother must have gone through knowing his pain--for those two and a half years.  A lifetime of pain.  It still hurts my heart to think about him.

That night, though, I had a dream.  Really, it seemed more like a vision because it was such an early dream, as if I had hardly had any time to fall asleep and then I woke so suddenly.  I dreamed of little Tripp.  His body was floating in a horizontal position, and two little flying fairy/angel type characters were wrapping strips of light cloth around him.  They were happy, but not in a disrespectful way.  They were gentle and . . . light.  Their movements seemed to mimic a maypole fashion, one going around one way, the other going around the opposite direction, moving over and under each other.  Then they stopped and looked up.  I followed their gaze and saw the sky open up to this soft light.  That light!  It was so peaceful and comforting and warm.  And it settle my heart from the breaking it felt for Tripp and his family.

MLK

When we took a trip to Canada this past September, we stopped in Washington, DC.  We didn't get there until probably 11:00 that night, but we drove downtown anyway.  The monuments and memorials are breathtaking at night.  As we were driving, I looked out the window and saw the side of one of the memorials.  Immediately, I wondered if it was the Martin Luther King, Jr. memorial.  We parked the car and walked down to it.  Sure enough, it was.  If you've never seen the MLK memorial, it is amazing, especially at night.  When you first walk into the memorial, this is what you see--a large stone that has been cut in two.  The piece cut out of it is a few feet away.  You can see it in between the two pieces.

 The next picture is the side view of the cut out piece.  The quote on this side took my breath away.  It says, "Out of  the mountain of despair, a stone of hope."  Not to diminish King at all, for I hold him in very high regards, but when I read that quote, I was holding Lily, and I couldn't help but think how appropriate that quote was to her.  She is my stone of hope that came out of such a mountain of despair.  Dave tried to get a picture of Lily standing underneath that quote, but I was in the picture (not one to share after a ten hour drive!) and the quote was broken up. 

 The next picture is the front view of that cut up piece.  Not what you expected?  Not what I expected.  But I think it is a beautifully captivating statue.  That's Dave with Gabriel and Soleil in the picture.

 I just had to share this picture.  I love the way the Washington Monument points in the background.

I cannot help but admire those who have stood in the face of adversity to fight for the dignity of others.  MLK. Gandhi. Mother Teresa. Mandela.  So heroic.  More than I will ever be.  But there is this little girl who calls me to fight for her dignity and the dignity of others who face the same adversity.  I do it on a daily basis.  My work is much more quietly done than the work of these heroes, but that doesn't phase her one single bit.  What's important is that she knows my love for her drives me.


I will never have a statue made out of my image.  Millions of people will never visit my grave.  Books about me will never sit on bookstore shelves.   But I will forever be etched into Lily's heart, and that is enough for me.

All Systems Working

Maybe I should knock on wood.  Lily has been doing so well lately.  It's as if all systems are finally working together the way they should be working for her little body. 

I guess it was around Thanksgiving, maybe a little after that, when the vomiting started again.  Lily had been off of all of her medicine and was doing fine, and then one day it all started back.  As always, it also brought on the frustration. 

When there's vomiting, I dread leaving the house.  One day, we were in the car--this was probably a good 30 minutes after she had eaten--and she vomited while we were driving down the road.  Another day, I had to pick Gabriel up from school so he could go sing carols at a nursing home, and one of the teachers looked in the car to say hey to Lily and Soleil and told me that Lily had thrown up.  I don't even know when that happened.  It could have been while I was loading up the car; it could have been while I was waiting outside for Gabriel.  Needless to say, I had to ask other moms who were at the nursing home if they would take Gabriel in for me.   It makes me a nervous wreck!  I've joked and said that maybe my calling is to be someone who puts together carseats.  (I've taken Lily's apart enough times to wash it, that I could do it with my eyes shut!)

Anyway, after talking to the GI, we discovered that sometimes coming off of the medicine causes a lag in the symptoms the medicine is preventing.  Hence, Lily not vomiting after we took her off it when she had that terrible cold some time ago. 

I guess I should also add that at the time, we had just begun slowly starting Lily on a higher calorie formula.  I started by just giving her 1 ounce mixed with the old formula once a day until I built her up to 1 ounce mixed with the old formula at each feeding.  We are now doing two ounces of the new formula and 1 ounce of the old at each feeding.  Because this formula is thicker, it is difficult for children, like Lily, who have motility issues to tolerate.  So here's another reason the vomiting was probably occurring.

But the doctor told us to give the medicine a week to get in her system, and almost as if she had a crystal ball, the doctor was dead-on.  A week went by, and the vomiting stopped!  Since then, and it's been at least a month, Lily has vomited twice:  one time when Dave fed her while she was still asleep in bed, and just the other day when I decided to give her her water while she was asleep.  For that, I can't complain, and getting out is a whole lot less frustrating!

I called this post "All Systems Working" because it seems like, for Lily, her body's systems need to work a certain way.  It's not just about making sure that her formula is moving through her at an adequate pace (motility).  It's about making sure that she's had, preferably, two bowel movements per day and that they're a certain consistency.  It's about making sure that there's no reflux--not just so her esophagus doesn't get damaged, but also because reflux can aggravate the sinuses, which, for Lily, can also cause gagging if the mucus is too thick in the back of her throat, which then will definitely cause the vomiting.  It's making sure there's no UTI, because UTI's can cause vomiting.  (And yes, we did check for UTI when the vomiting started back.)  And it is about making sure that we give enough time in between feeds and water so what she's had has had enough time to move through. 

All small pieces of a puzzle that cooperate one day and connect and then pull themselves apart when we're least expecting it and decide not to fit the next day.  The picture is constantly changing. 

As is Lily.  While the scale isn't showing much weight gain, her little head is plumping up ever so slightly, and her legs are beginning to feel thicker.  She feels different when I pick her up, so hopefully this new formula is working.  She was such a skinny, little thing!

She continues to amaze her therapists and us.  Each day we practice sitting with a "pretty back"  (not bent over with her muscle bump sticking out), and each day she sits for longer periods of time and will even play with toys with both hands while sitting.  She's enjoying the riding toys she and Soleil got for Christmas.  She is taking tastes of strawberry yogurt and strawberry pudding and peach yogurt--something unheard of in the past!  She's taking steps with less assistance, and she's doing a great job grasping things like the handles on the riding toys.  It's a joy watching her determination and how she enjoys life.  She inspires me--yes, this little girl with her developmental delays and her mental deficiencies--she inspires me, in so many ways, to be better at so many things.  There aren't too many "normal" people out there who have the ability to do that.  What a wonderful little girl!

My Sunshine

You are my sunshine

My only sunshine

You make me happy

When skies are gray

You'll never know dear

How much I love you

Please don't take my sunshine away.

Yesterday was Soleil's first birthday.  It was a beautiful day to celebrate with family and friends.  It's so hard to believe that a year has gone by so quickly.  

Here are a few more pictures:

 Lily and Rani

 Gabriel helped Soleil open her presents.

I stayed up until 2:30 in the morning making Soleil's cake. 

Dave stayed up with me and helped me roll the balls.

Little Sister

Here's a video of Soleil pushing Lily on the zebra scooter that Soleil got for Christmas.  Lily loves riding on it!

December

December has come and gone, and with it, many intentions to write post after post.  Unfortunately, there just isn't much time.  I wanted to write about our month and how we celebrate Christmas the whole month of December with Gabriel opening little advent boxes to find out what the activity for the day was going to be.  How we made birdseed pinecones for the birds and camped out overnight with friends at the county park, visiting the light display the park has.  Breakfast with Santa, cookie baking, movies, a nursing home visit, hot chocolate with marshmellows. . .we were very busy!

And then I got the shocking email that our little friend, Lilly (see Pray for Lilly in the right bar), passed away, and a day later, I saw a Facebook post that little Julia (the little girl we visited on our way back from Canada--see Dancing in the Rain in the right bar) also passed away.  It was a very emotional time.  The Sunday of that week, Dave and I decided to head up to North Carolina with the kids to Lilly's viewing.  It was nice to meet Lilly's family in person and support them--yet another part of my Trisomy family.  And I wanted to write about it, to try and, once again, make sense of all of the emotions that soar for these families, ashamed of the fear that erupts for my own little girl while watching the pure gracefulness that these mothers have in the face of death, their trust in Our Heavenly Father, and their faith.  


Among all of this, we were also dealing with Lily vomiting again.  We're thinking that a slight change in formula coupled with no reflux and motility medicine aggravated this.  So Lily went back on all of her meds, a week passed, and we didn't see any vomiting until yesterday morning.


Right before Christmas, we visited my hometown and all the family who lives there.  It was nice to spend that time there, but being out of town turns schedules upside down, and for some reason, Lily just wasn't liking her oxygen cannula.  She cried any time we tried to lay her down to go to sleep.  I thought it might be because she was without her humidifier. Dave thought she might be afraid of the dark in a house that isn't hers.  We both figured it would resolve once we got home, but both Christmas Eve night and Christmas night, she continued crying when we laid her in bed.  Thinking it had something to do with the humidifier, I checked it on her oxygen concentrator and found that it wasn't working, so I adjusted the tubing.  It worked and Lily stopped crying. . .for about five minutes.  Then she started back, so I looked at the water trap that connects the tubing to her cannula tube.  The room was mostly dark, so I'm guessing that when I checked the connection, I tilted the tubing, not knowing that it had water in it.  I heard a strange sound coming from her cannula and jumped up to take it off, only to find that water was spraying out of it!  That meant that it was going in her nose and she could have been breathing it in!!  She was crying, so Dave was trying to console her.  Then she was coughing and gagging and throwing up this bubbly gunk.  It concerned me because I had heard a few summers ago about this little boy who passed away due to dry drowning (I think that's what it was called)--where he went under water but then came back up and went home, only to not wake up after going to bed.  I've heard that you can drown in a tablespoon of water, and was so worried that maybe Lily had aspirated on that water.  Then all of a sudden, Lily fell asleep and her nose turned blue!  I was so worried that she had, so Dave took her to the emergency room.  Luckily, an x-ray confirmed that all was ok, and Lily got to come home.  And so ended our Christmas.  Not exactly the way I envisioned, but I'm certainly glad that it wasn't worse.


With Christmas over, we were able to relax a little and watch the kids play with their toys, and Dave even got our garage cleaned out and organized.  I wish I could say the house was the same way.  


And now the New Year is here.  It's hard to believe that it's been almost a year since Soleil was born.  Life is busy, but I'm thoroughly enjoying my precious children (well, to be honest, I'm not enjoying this weaning process with Soleil) and watching their development.  Gabriel is so smart and is beginning to pick up on the nuances of our language (he told Dave the other day, "You're killing me, Daddy." and said it in the appropriate (and fun-loving) context); Soleil is cruising everywhere and being highly selective with her food; and Lily is getting that much-needed back strength and taking steps with Soleil's little push toy (with assistance) and playing with her toys. And I am so fortunate to have Dave as my husband.  He is so thoughtful and hard-working, inspiring and loving.  It's also been nice seeing Rani and Autumn grow into the young women they've become.  What blessings!


I wish you all a Happy New Year and hope that your holiday season was filled with wonderful blessings and time with friends and family.  

Gabriel with our advent boxes

Lily and Dave making birdseed pinecones

Lily working on her straight back

Breakfast with Santa.  It's ridiculously hard to get all three children to look at the camera at the same time.

My little contortionist.  Yes, that's Lily!  She just started putting her toes in her mouth!

Gabriel ice skating.  One of our advent activities.

Lily and Soleil in the bike trailer.  It was a beautiful day!

Lily and Autumn on our camping trip.  Autumn had Lily laughing!

Dave, Autumn, and Soleil on our camping trip

Gabriel and his friend Connor on our camping trip

Gabriel on our camping trip

Lily at the parade

Soleil at the parade.  Autumn is holding her.

Gabriel and his friends Connor and Cole at the parade

Gabriel and I sword fighting in Toys R Us