4th Birthday Photo Session

4th Birthday Photo Session

Tuesday, August 31, 2010

Season Of Stress

Summertime usually invokes thoughts of hot days on the golf course, cool swimming pools, pleasant warm nights in the backyard for a BBQ, campfires and time with friends.  Obviously, this year, summer has taken a wrong turn and sent us down a completely different course.  Sadly, this course is not green, filled with trees, and I'm not hunting a little white ball with a stick in my hand, cursing under my breath, *silently laughing.*  This summer is not only filled with none of the usual fun activities, but even the weatherman has made a change. Our summer weather has been weird.  It's been cooler, cloudier, more like a spring or a fall.  It's been a very odd season, in more ways than one.  I find it amusing that this odd summerlike weather has really matched our mood, and I'm rather relieved that I'm not staring out this hospital window everyday wondering how wonderful it must be outside these sterile walls.  It's been refreshing that I'm sitting in a season of stress, and the regular summer season hasn't appeared to torture me with what I'm missing exactly.  I'm not missing out on our usual, glorious, and much-too-short summer weather.  The same summer weather that makes this city bearable through the long, endless rainy months.  The summery goodness that people visit and fall in love with our city, to the point of moving here.  It's the wonderful warm goodness like a fresh baked chocolate chip cookie, right out of the oven.  Yep, it hasn't really shown itself in it's usual form this year, and I can't help but selfishly be thankful for that. Sometimes it's odd how life just sort of helps you out in funky ways like that. 

Andi Bean is on for surgery first thing tomorrow morning.  They will wheel her off between 6:30 - 7 a.m.  We're staying here tonight, so we can have some really good family time before the biggest, probably most difficult day of our entire life.  This is the big one.  This surgery can and will make life so much better for the Bean.  I hope this is a one-time surgery.  I hope that everything goes better than 'GREAT'.  I hope she recovers faster than they ever expected.  I hope to report only good things on the flipside of this nightmare.  Finally, I hope that as tomorrow is September 1st -- a month that equates the start of fall, football, leaves turning glorious colors, I hope with the start of a new month, a new season can begin for us and the Bean.  I hope that this season of hell can end and we can begin a renewal or rebirth, and live out a healthy life filled with much love and well-being.

Good vibes people, good vibes.

Monday, August 30, 2010

Thelma, Louise & The Binky

Yesterday when I arrived to spend not nearly enough hours with the Bean, the TV in her room was featuring the movie, Thelma & Louise.  I was kind of curious if it was a subtle suggestion that the Bean try to break out of this joint, or the Bean stop tolerating all undesirable behavior toward her?!  As long as she gathered the message that it is super cool to be a strong, independent women, I'm okay with her choice of movies.  Plus, a young Brad Pitt... uhm, HELLO!?!?  Not a bad choice, my dear.

Cardiology stopped by this morning and checked on the butter bean.  They said that surgery is looking likely for Wednesday, but it's really up to the Bean.  There are two reasons that she could be postponed again:  a fever + low white blood count, not necessarily just a fever; an emergency.  But as of now, this minute, heart surgery on Wednesday is looking likely.

The family flies across the continent yet again. Too bad I can't accrue frequent flier miles based on days spent in the hospital.  Our first stop when we finally get medically cleared, is a weekend at the super nice hotel at the beach. This family needs a mini-break, fur-baby included. Bring on the crab dinner.

It's become increasingly clear that there is one thing we can never be without, the binky. Andi Bean loves her pacifier, has since birth.  Since she doesn't yet bottle, this is a great sign that eventually she will.  But, in the meantime, it's one thing that really calms her down from a hissy fit.  So, maybe she'll soon break out of this joint, strutting her new found independence.  Just be sure she packs the binky, and no one will get hurt.

Sunday, August 29, 2010

Shift Change

It's Sunday.  Last day of rotation for the attending pediatrician.  How many of these have we seen come and go?  I don't even remember all their names, but I would recognize all their faces.  It's really troubling to realize how many have been through here.  They leave and we remain.  Ugh.  This week we actually had one of the first Dr's back in June stop in to see the Bean and say hi.  She said that so many Doc's that have worked with us, follow us in the computer, and are cheering us on.  I've heard that from the 3rd year med students too.  Even though there have been quite a few shift changes or rotations, they still keep up with our Bean. 

The blood work today is still positive.  The chest x-ray "looked about the same" which isn't necessarily bad, it takes awhile for the healing to show up on x-rays.  She might be getting a little dry, and they might have to stick another IV in for another bolus of fluid.  The balancing act continues.

Right now, she's sleeping comfortably in Daddy's arm.  She is having another good day.  Tomorrow the cardio/surgeon team is going to make a determination about surgery on Wednesday.  I have no idea if they're going to want to move forward this week or not.  But the new attending pediatrician comes on tomorrow.  Perhaps this one will have the magic potion to fix the bean.

Saturday, August 28, 2010

Resilient Bean

Spoke with the Attending, and he said the Bean is doing well.  She hasn't had any spit-up's, major leakage, or any other sort of problems lately.  Her IV fell out overnight, so, they've switched her antibiotics to the G-Tube.  The surgeon resident-du-jour is supposed to come by to discuss her G-Tube with me.  I'm guessing he wants to explain why we shouldn't take that .5 ml of water out of the balloon.  Since she's doing so well lately, I'm afraid to make ANY changes.  However, if she does start to have spit-up issues again, we're going to try the NJ tube again with lots and lots of med's prior to.  Wow, I've been heard!  Kind of empowering.

We're going to do another chest x-ray tomorrow, as well as labs, so that the Attending coming on for the week on Monday, has current info.  As of now, Saturday morning, all indicators would point to her surgery being on schedule for Wednesday.  But one upchuck could aspirate those lungs again and we could be back in wait n' see mode.

I have to admit, I can't stop watching the video I shot of her yesterday.  It is an amazing testament to the resiliency of babies that she laughs, smiles and let's her lil' personality shine through.  If you could see her hands & feet closely, you'd see pin pricks galore and bruises, from all the blood draws, IV insert points and remnants of days past.  I hope to look back on this time in our lives and sigh with relief -- having put this hospital living behind us.  I know she will never remember any of this, other than bonding us tighter than ever, but, I will never forget or relax from this experience. Savor every moment.  I hope to really embrace that as a way of life.

Friday, August 27, 2010

Direct From Doernbecher's -- It's The Bean!

We shot some video of the bean today!  Had to break it up into three parts so it would upload!




Speaking Bean

Yesterday, the ENT resident was able to get a 5French (small tube) down Andi's left nostril. However, she didn't put it down very far.  They check placement of this type of tube with an x-ray.  The x-ray showed that she didn't even get it down to her stomach.  Don't know if she wasn't paying attention or what!?!  With the NJ tube, you want to get it down to her stomach with slack curled down there so it can work its way into the intestine.  She's had an NG and OG tube before, that goes directly into the stomach - through the Nose or Oral.  This one is a little more intense, as it's past the stomach and it takes a few days to work it down there.  Have I mentioned recently that Andi's in a class by herself though?  Oh yeah, the standard does not apply to the bean...she's going to set those rules.  The bean's nose was opened back in June, with a revision later that month to clear out scar tissue.  The fact that they couldn't get a tube bigger than a 5French indicates to me that they'll probably need to do another revision and clear it out some more.  It was explained to us in the beginning that most cases, the choanal atresia repair often requires 3 surgeries to get the passageway open and keep it open.  So, here's this 5French tube shoved into her nostril -- the nostril that is more open than the other.  Common sense would indicate that having something in her nose, well, that would make it more difficult for her to breathe.  Not only that, it's uncomfortable in the beginning, until you get used to having it there.  So, Andi wasn't having it.  She pitched a fit, and was inconsolable.  Not something you want of a baby you're trying get bigger... as pitching a fit causes her to burn more calories.  Not being able to breathe as well, despite being on minimal O2... again, not working so well.  They increased her O2 a bit last night, but we had to lobby on behalf of the bean.  Demanding that we rethink this plan. 

I understand why we want to do the NJ, and actually agree with it.  You bypass the stomach so you don't have reflux, and thus, loose the calories we're trying to get in her little body.  Also, when she refluxes, she's breathing so hard that she can inhale the formula coming up from her stomach.  This is called aspirating the lungs.  So, the NJ tube will help minimize the risk of aspirating the lungs again and causing potential pneumonia (what they think has occurred twice these past two weeks).  We need her lungs in tip top shape for the heart surgery.  Thus, I understand the need for the NJ tube.  However, again, Andi writes her own rules.

Apparently last night, sometime after we left, Andi bean pulled out her own NJ tube.  It wasn't in very deep, not even to her stomach...so that's easy enough to do. Even when one of her hands is bound with an IV in it and the tube is taped to her face.  The tube was making her work even harder at breathing, and I'm honestly a bit relieved it's out -- despite agreeing with the premise for inserting one.

So today I've made some demands.  I've been saying all week that I've felt that a lot of her spit-up and G-Tube leakage grew worse when they came in a blew up the G-Tube balloon more so.  There's a balloon on the inside of Andi's stomach that they blow up with water to pull the stomach to the abdomen wall.  They control the size of the balloon with water, and that helps make the tube sit flat and adhere to the ab wall more so.  However, for a little baby such as Andi, in my mind, blowing up that balloon on the inside of her stomach, even a small amount, leaves less room in her stomach for processing things like formula.  She's on small, continuous feeds -- 24 hours a day.  She gets less than 1 oz. an hour, all day long.  So, since they've blown up that balloon, it not only caused more spit up, but she's also had more leakage out of the tube site.  It's almost as if she gets any pressure in her stomach, it finds an exit out of a small part around where the tube exits her skin.  So, I've asked them to not only reduce the water, ever so slightly, to back to what it was... and I want her put on the infant gas med's four times a day again, as it was, instead of 'as-needed'...to help minimize her gas pains.  She's very vigorous with her pacifier and that, along with when she cries, is a time where she sucks in air.  Venting the g-tube hasn't really produced relief either.  It seems like the gas hurts her before it comes out, not when it's in her stomach.

So, there's a lot more detail than people probably want to know... sorry, this is my daily world... and I'm pretty immune to all we have going on.  Let it be said that all of us have the same goal... get Andi in her best possible shape for surgery.  Cardiology is going to revisit her today to see how she's doing, and make a final determination on Monday to decide if we're on for next Wednesday, or not.  The Dr. still wants to get the NJ tube in, but, not sure if/when that's going to happen.  I laid down some rules if we do try again.  There will be pain med's issued prior to... get her as chilled and comfortable as possible.  I understand the reasoning to do the tube, but I also have to advocate for the bean. She is sass-o-frass... and she's telling them, 'nuh-uh - I don't think so.'  Very few speak bean... that's what makes it very difficult to leave each night.

Thursday, August 26, 2010

Bob Barker & The Magic Wand

Sometimes I feel like Andi Bean is a science experiment.  The constant poking, prodding, trying this, switching to that... I know she is tricky and keeps throwing curve balls, but, for the love of the bean already!  The fever broke yesterday before the first dose of antibiotic was given via IV.  Just in case it is pneumonia though, we're going to run the antibiotic for a few days and see how she does.  She gets her daily blood tests and chest x-rays are every few days.  Yesterday's x-ray was worse than the day before.  However, she seemed better yesterday.  Seems even better today.  She sleeps.  Earlier today, she was smiling at me.  It was the most incredible thing.  I tried to get it on camera, but not quite sure if I caught it.  She hasn't had much to smile about, so, I was amazed to see that she felt otherwise.

The Attending reiterated that the goal is to get Andi as big and strong as possible, getting her ready for surgery.  Feedings are an issue.  They increase the calories, her stomach revolts.  They increase the volume, her stomach revolts.  She's on continuous feeds and they don't want to mess with the current volume, speed, nor content.  She's had some reflux vomiting and some leakage out of her G-Tube, and that makes it difficult to tell if she's getting enough.  At 3 months old, she's put on less than 3 lbs., mainly because it's like she's on the stair master in the gym, all day long.  In order to help her with the reflux, the g-tube leakage, and make sure they get in as many calories as they can, and help minimize loss, they want to put in a NJ Tube.  A NJ Tube is a tube that goes up her nose and down past her stomach into the intestine.  The nurse who has her today revealed that she does them often, and other nurses usually ask her to do them, as she has the touch.  When I returned from a break, I learned that she tried and could not get the tube up either side of Andi's nose.  Therefore, the ENT resident is going to do it.  She just sprayed some junk in Andi's nose and is going to come back soon, spray some more and try to get a smaller tube up there. During her heart surgery, ENT is going to scope her nose while she's under sedation and check out how her choanal atresia repair looks.  See if they need to clear out any scar tissue.

I understand why they do everything they do to this baby girl.  They explain everything in great detail, encourage me to ask questions, and all that... However, medicine is science. It is not exact. It is not easy.  This is a teaching hospital.  And their motto is 'Where Healing, Teaching and Discovery come together.'  In our case, I'd prefer a lot more healing and a lot less discovery.  I just have this unrealistic vision of Bob Barker strolling out from behind a curtain with a magic wand and with one wave of his hand, and of course a plug for animal rights, and voila! the Bean would be magically healed. That'd be a lot more fun than the different variations of  "we'll see", "it' depends!" and "it's up to her" I hear repeatedly.

Wednesday, August 25, 2010

The Waiting Game

Surgery was postponed due to the fever.  They have to await test results to see what could be causing the fever.  An infection?  Another UTI? a URI? a cold?  Coming in this morning, she still has a fever, and a cold cloth on her head. Right now it's around 101, but we have yet to hear what it did overnight.  I'm guessing it was high since they have the cool cloth on her head.  She got a new IV.  This one is to give her fluids, as the urine output & sweating have decreased, and her blood work shows that her creatin, which indicates kidney function, is high.  These things point to her being a little dry.  Again, we're in a constant battle of too wet/too dry using the two different type of diuretics to help her body deal with her heart & lungs working so hard.  We haven't yet gotten our morning update from the nurse, nor the rounding report.  Cardiology left me a voice mail last night stating that they are looking at dates to reschedule the surgery.  Next week most likely.  However, we're awaiting the respiratory swab results, and that takes 48 hours for preliminary results.  In the meantime, hospital policy is that any medical personnel coming into this room has to be in full gowns, gloves, face masks, while we await the respiratory infection results.  That way, if it is positive, they don't take any germs and spread it to another patient.  It's a big scarlett letter on our door, but the kid next door has similiar instructions, so that, plus this being our 2nd time with this restriction, we're not so mortified.

So, we sit here and wait.  Wait for her to clear her fever, and keep it cleared.  Wait for test results.  Wait to hear the rescheduled date. Seems all we do is wait.  It's more than difficult to be patient.  But if Andi Bean isn't ready, nor 100% for the surgery, waiting isn't a bad thing.

Tuesday, August 24, 2010


The bean developed a fever overnight, 102ish... we don't yet know why.  She is on day 13/14 of an antibiotic to treat her UTI & possible pneumonia (aspirated lungs w/formula).  Her chest x-ray looks good.  Her urine output is lower, but her input was lower because of a couple upchucks yesterday...  The Dr's are talking to cardiology, cardiology is likely talking to surgeons, etc.  We don't yet know if we're on for tomorrow or not.

I'll update when I know more...

Monday, August 23, 2010

Surrounded By Family!

Andi is currently soaking up the love of her grandparents, whom traveled all day yesterday to be here with her.  They are taking turns holding and talking to her.  Last night, she had the love of her other set of grandparents, whom live here in town.  She is a very beloved little angel.  We've encouraged our friends and family to come spend some time with her, as after her surgery, we will be unable to hold her for a few days.  She will be intubated for the first few days.  She will have tubes, wires, a central IV, maybe another PICC line, all will make holding her very difficult and honestly, scary.  From the surgery, she will spend a few days in the ICU.  "It depends" is the general answer we get to most questions of timeline.  As "it depends" on Andi, it depends on how quickly she recuperates.  When she's stable enough, we'll move to one of two places in this hospital.  One option we've lived in for a few weeks and the nurses know us well, especially after we brought them banana bread still warm from the oven.  The other option is the last remaining hospital section we have yet to stay in... if we go there, we'll have hit every floor, every wing, every option this luxurious resort has to offer.  There's something for her resume!  The surgery will take 5-8 hours, although "it depends" on Andi how long it takes.  From our other surgeries, it was true that the person with the most time-consuming job was the cardio-anesthesiologist -- the one that puts her asleep for the surgery, yet is very cognizant of her heart defect and vitals.  We've been told that person has the most difficult job.  However, in this surgery, I would think it's the one or two actually working on her heart.  I'm sure all are equally difficult.

Today, we are awaiting the pediatric surgeon nurse practitioner, whom is apparently a G-Tube specialist.  Andi's G-Tube is leaking, and even more since some kid from surgery came up last night and inflated her balloon a skoosh more.  The bean has thrown up a few times since, and cries with a little 'ouch' to her cry.  It honestly sounds like she's saying 'ouch'.  Luckily for us, she "performed" this very act while the Dr's and med students were in her room for rounds.  I like it when she demonstrates something for them that I've babbled about trying to explain.  Makes us the perfect tag-team duo -- the next great mother-daughter act! 

The other people we're hoping will stop-by today are the surgeon's whom will work on her heart.  There's a consent form that I have to sign, and they usually review the procedure, the risk's, the recovery, the whole synopsis.  It will be nice to put names & faces to someone other than what our cardiologist stuck in my head, an Australian and a Dane, both with accents. 

In the meantime, the grandparents are reunited with the bean and loving on her.  They're watching her O-sat's and asking politely that she increase them when they dip.  It's what I do as well, and find humor in the realization that they are doing it too.  Ah, Poppa B and Ginga are here.  Makes me feel better for sure, being surrounded by our family.

Friday, August 20, 2010

Heart Surgery & The Lesson

Andi bean's heart surgery is scheduled.  This next Wednesday, August 25th, first case.  I've been told that means 7 a.m.  Whether you're religious or not, it's time to conjure up some good vibes for our lil' bean.  Anytime you have a surgery, it's scary.  Throw into the factor that it's a three month old baby, scary doubles.  Add in that it's on a vital organ, ugh... scary times infinity.

Andi's heart defect is pretty complicated.  She has a complete AV Canal defect.  Two holes in her heart. One hole in the upper chamber, one hole in the lower chamber.  She also has a valve that is currently one large one, that needs to be divided into two smaller ones. It's pretty intense.  Here's a link if you want to see an explanation of the AV Canal defect:


I think waiting out the surgery is going to be very tough.  However, I actually think the night before will be much more traumatic.  The 'what if's' will likely torture us.  We've had to discuss the possibility of losing her. It is a possibility. Especially considering how young and small she is.  I imagine that night will be extremely difficult, but full of love and affection.  This baby is loved by many. She is strong.  She is a fighter.  And hopefully, she toughs out another surgery and blows the Dr's hair back and parts it with how resilient she is. 

I keep thinking how we said that raising a dog is a great precursor to parenthood of a child.  Potty training, manners-training a dog has to be much like feedings throughout the night, and soothing a crying baby. The funny thing is that we have a $10,000.00 dog and a multi-million dollar baby.  Our dog has had four surgeries.  One to neuter him.  Left TPLO (ACL surgery), Right TPLO, and one elbow surgery.  Now, here's Andi facing her fourth surgery.  Perhaps this will be our magic number with her too!?!  We'd be very lucky if that were true, as Cory read somewhere that a CHARGE baby is likely to have 10 surgeries by the time they're 5 years old.  Maddux, our dog, is worth every cent of those surgeries. Even the night I nursed him through his last surgery and he cried all night long.  It was one of the most difficult nights I've ever endured.  Just as Andi is worth every little bit, and then some.  I knew parenthood would be tough, but this is way beyond what I expected.

Someone mentioned that there's a lesson for us to learn through all this.  That sounds like something I would say too.  I think the lesson I need to learn is to not take anything for granted.  I always have.  Everything has always come rather easy to me, and I don't fully appreciate what I have or do, I just expect it.  I've always expected that things will work out. This past year has taught me that things don't always go as planned, and maybe I should stop and appreciate what I do have.  Hold onto it and savor it, as it might not be there tomorrow.  Wow, Tuesday night is definitely going to be tough.

Thursday, August 19, 2010

Living In And Out Of A Children's Hospital

People ask, 'how do you do it?' or make statements like 'I can't even imagine', therefore, here's a glimpse of what it's like to be me.  I get up anywhere between 5 and 7 a.m., feed the dog, have some coffee, check emails, & facebook.  I sit and veg-out, staring at others Facebook statements of normalcy.  Only through FB did I actually know it was summertime, by seeing friends camping, hiking and doing all the things I'd normally do.  By 8:30 it's time to take Maddux (our fur-baby) for a quick walk around the park loop.  I get to watch him laughing, trotting, and drooling ... being a happy dog. It makes me smile every single day. After the park, it starts.  I pack up my laptop, some food, and load up the truck.  I get on the road and fight traffic.  Some days, music plays.  Sometimes I zone out and can't tell you if music is on.  Some days I cry.  Cry about Andi's situation and what she's having to go through.  Cry with dread of another day at the hospital.  Cry for the summer I am missing.  I just cry, feel sorry for myself, and let out a little bit of the pent-up emotion.  Some days, I stew about the aggressive drivers, wonder if they have any clue or thought as to what other drivers might be going through ... would that change their nasty driving habits?  Thoughts like, "I'm sorry I'm in a bit of a haze buddy, but... be thankful you have a place to rush to, assholio!" I'm not bitter, or angry.  Maybe just sad that people are so wound up in their day-to-day bullshit, that they have no concept of what other people might be tackling.  And don't get me wrong, I'm not even the one fighting for my life.  Not physically.  Then I get to the hospital.  It's an amazingly huge place up on a hill.  It has the most spectacular view.  I lug my crap from the parking garage (I'm here enough to know exactly where to park, and silently laugh at those suckas trolling for parking!) up to the hospital lobby.  I cross over bricks engraved with names of donors whom purchased the bricks when the hospital was being built. It's an impressive entry of names.  I hit up Starbuck's for another cup of java and then head to see my baby girl.  Some mornings, I come in and they're doing something to her - like drawing blood, an xray, taking vitals, or mornings like now, where she's wrapped up and sleeping comfortably.  Since she didn't sleep hardly at all yesterday, I'm leaving her be until she wakes on her own, or the nurse has to do vitals or such.  Sleep is so important, I'd hate to selfishly disrupt hers because I can't wait to hold and love on her.  I have all day for that.  I spend all day at the hospital.  Luckily, they have wi-fi in this hospital and our extra large room allows me to set-up my laptop so I can keep up with work, Facebook or even this blog.  I used to be really big into Perez Hilton and the gossip du jour... that has long since passed, and it no longer interests me in the least.  When I'm not holding Andi, or tending to her, I'm talking to the Dr's and Nurses, or simply waiting for rounds.  A group of up to eight Dr's and med students that go from patient to patient, recap the situation, the latest updates, stats, and plan of action.  It's a lot of eyes and ears that are focusing on my baby, if even for a few minutes.  I get the opportunity to ask questions or simply make bad jokes that make a few people laugh.  These are my new friends, this is my daily socializing, this is my summertime fun.  So, I spend all day receiving visitors.  The nurses tending to Andi.  The Dr's & med students will come by.  Sometimes it's the ECG tech, or a vampire.  I've recently befriended the young Chaplain.  She stops by to check on Andi daily, especially after hearing her story.  I'm not religious, and she's not pushing any sort of religion on me.  And hey, maybe her prayers will be heard, as I question the likeliness of mine being addressed.  So, I sit with Andi all day.  There's no place I'd rather be.  In fact, I can't even seem to steal away to go get myself water.  It's very difficult because I don't even think of leaving, I don't want to.  I signed on for full-time parenthood.  Full-time parents don't easily get to take breaks to go get something extravagent like a facial.  There's a certain level of guilt that comes from leaving Andi by herself, or in the care of the nurses, to go get a mani-pedi.  While I vow to take care of me, stealing time away from my bean is not a luxury I need right now.  She's my need.  I need to be with her.  People like our pediatrician, the volunteers offering to help, friends, will suggest or insist I take a break.  I do.  I take a break every single night when I go home.  I usually leave around 7 p.m. each night. That's my break.  I get to go home, while the bean gets to stay here.  Again, not part of the parenting plan...but, this is the best place for her right now.  I recognize that.  I get home completely drained.  I sit all day.  Some days are good.  Some days are hard.  Some days the bean is fussy and it breaks my heart.  So, I go home and usually imbibe on some wine.  This will cease soon, but right now, it's the only thing tempering my nerves.  Right now, it's allowed.  At night, we strive for some semblance of normalcy, appreciating the summer evenings.  It's tough, as this is not the summer we envisioned. So, I get a break.  I live my day in the hospital.  I live my night at home.  I get to sleep in my bed with my family, minus one lil' bean.  Her bed, next to mine, lies empty.  It breaks our hearts.

Wednesday, August 18, 2010

Andi's Story: CHARGE Syndrome

Andi Bean has CHARGE Syndrome.  I've never really said it or discussed it much.  I haven't really felt ready to discuss it with everyone.  But, maybe by discussing it, not only help educate people, maybe it will somehow help Andi.

What is CHARGE Syndrome?
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

(source: http://www.chargesyndrome.org/about-charge.asp)

Did we know that we were winning the genetic lottery?  Uh, that'd be a big NO.  Starting at 19 weeks of gestation, we were told that not only were we having a girl, but she had hydrocephalus, ventricularmegalie, and an umbilical cord varix. ... "A What?" ... Yeah, I hear ya.  Hydrocephalus is water on the brain... I believe they said we had that because of the enlarged lateral ventricles in her brain, aka 'ventricularmegalie'.  The umbilical cord varix is just fancy way of saying there was a slight enlargement of a small section of the umbilical cord.  We did an amniocentesis, blood tests, an MRI, and a fetal echo cardiogram.  Throughout all the testing, the tests came back with genetics, our perinatologist at the time, & a neurologist all concluding that our worst case scenario is that Andi could possibly have learning disabilities and maybe seizures.  They had me do ultrasounds every three weeks, to measure the lateral ventricles in the brain.  They remained just slightly enlarged.  At 26  weeks, we did a follow-up fetal echo, because at 19 weeks, the fetus is just too small to get a good look.  The cardiologist stated he thought he might see a small hole in the bottom part of her heart.  However, 80% of those close up on their own by the time the baby is born.  He said we'd do another echo after she was born. Not only do we have a hole in the bottom part of her heart, we have a bonus hole in the top portion of her heart that you couldn't see on a fetal echo.  In addition to that, she has a valve that needs to be turned from one big one into two little ones. So, basically, her heart is working way too hard, and the blood is going to the path of least resistance, her lungs.  She's taking diuretics to help her body work more efficiently.  It's a tightrope of fluid balance, keeping her not too wet and not too dry.  Giving oxygen helps her body, but it also sends more blood to the lungs.  So, we're kinda stuck.  Her heart is messing with her lungs.  They're both working so hard it's hard for her to put on weight, as it's like she's in a constant aerobics class.  She has trouble nippling (taking a bottle) because she's breathing so hard.  Your body naturally wants to protect itself, and breathing comes first.  So breathe or swallow..., yeah, I'd breathe too.  I believe a lot of her reflux is due to the fast breathing as well.  Imagine a marathon runner trying to stop and eat when their heart & respiratory rates are so high... yeah, it's a nice projectile vomit!!!  In any case, they feel that she can't really thrive until we address the heart defects, despite wanting her to initially be 12 pounds and 4-6 months of age.  The bean is almost 12 weeks old, and only about 8 lbs.  She was born 5 lbs, 6.2 oz's.

In any case, as to her having CHARGE Syndrome. CHARGE is a menu of options of problems a child could have. 

The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. (source:  http://www.chargesyndrome.org/about-charge.asp)

However, those are the main obstacles, there are minor obstacles CHARGE too.  Andi does not have coloboma, but she has a complete AV Canal heart defect, choanal atresia (nasal blockage), ear abnormalities and is deaf in her left ear, partial hearing in her right - but we don't yet know to what level. Her MRI also revealed that she lacks a certain fluid in part of her brain, indicating that she will have balance issues.  She's definitely small, but that's also a symptom of the heart defect.  She has feeding issues.  She has some left side facial palsy, although, some Dr's just describe that side of her face as weak.  For example, her left eye doesn't always close all the way.  Those are the issues we know of at this point, and to what extent or severity, we do not yet know.  After her heart surgery, we will have to reassess her and see what, if anything, the heart repair corrected.  We're hopeful that it will fix a lot of what's holding her back, although it's a pretty delicate surgery.  Hopefully, we're a one-time surgery too.

In Andi's first seven weeks of age, she's had three surgeries.  Two for the choanal atresia -- to open up her nose so she can breathe.  Her third surgery was to insert her G-Tube, so we could easily feed & medicate her without putting a tube down her mouth or up her repaired nose.  Her AV Canal repair will be her fourth surgery, and most vital.

People ask me all the time, 'what can we do for you?' or 'how can we help?'  I am starting to come up with options on how you can help.  Give blood.  Go to the Red Cross and donate.  Andi's already been a recipient of donated blood, and will require more for her heart surgery.  Honor her by helping someone else.  The need is always there, especially during the summer months.  Donate your time and/or money to a children's hospital, or Ronald McDonald House.  Donate some baby clothes to the hospital NICU.  Quit smoking.  Value your own health more than you currently do.  I'm sitting here in the hospital watching my baby struggle to breathe, struggle to thrive -- watching her heart pound in her chest.  If you're overweight, lose the weight.  If you smoke, please stop.  If you lose yourself in the wine bottle like I've been doing most nights lately, cut it out.  Find alternative, healthy solutions to whatever is keeping you from thriving.  I've got this amazing little baby fighting daily to simply live, and you've got what... Your problems are actually SMALL when you have your health.  So, stop bitching, stop abusing, and start savoring each minute.  THAT is how you can help, how you can honor this lil' bean.

Photos: August 17, 2010

Tuesday, August 17, 2010

You Want To Do What?!?

They put in a new IV into Andi's arm...much better spot than her head.  Seems we've been in the hospital too long, as I recognized the lady whom inserted the IV today was part of the ambulance transport team whom escorted Andi from her birth hospital to OHSU, in the beginning of June.  LaDonna.  Yep, we've been here way too long.  Duh!  They inserted the IV so they could start giving her lasix dosages via IV, as it is thought that the antibiotics might be making it hard for her body to absorb the lasix, and thus, make it not as useful.  The bean has not released as much fluid as she needs to and is still laboring on her breathing.  Yesterday, they gave her an extra dose of the diuretic through her G-Tube, but it didn't seem to work as well as it should, therefore, they're switching to IV.  Right now, she's got a urine collecting bag on (encased in a diaper) ... trying to get a sample so they can test her urine for the infection.  They've also ran her blood work today and according to the attending, it looks "really promising."  Her daily chest xray shows improvement in the sense that perhaps her lungs aren't infected, just irritated.  The antibiotics she's on are to work on both the UTI and the lungs.  They have to take precautionary measures - just in case.

They put a bandage around her G-Tube, a netting material to help stabilize the device.  It's been leaking, which apparently is a normal thing while the area heals.  Andi's was looking like it was ready to fall out or pull out, so they wanted to stabilize it until the GI team could look at it.  They said it was fine and that enough time had passed that it should be okay.  In a few weeks, we are supposed to switch from the monster cord with the 3-prong doohickey (I believe that is a medical term) to a "button" ... haven't a clue what that really is, but they say it will lay more flush with her skin and we'll just 'attach' the feeding cord to it.

I've asked the nurses to start using the cloth tape on Andi's face.  Yesterday, I watched her pull the O2 tube and thus, rip the tape off her face.  The nurse replaced it with two layers of tape, and within the hour, she yanked it off.  OUCH!  I don't care if she sweats eighty rolls of the cloth tape off, it's less icky than the heavy adhesive clear 'duct' tape.

She's been a bit fussy today. A bit sweet today.  A bit sleepy.  A bit wide awake.  She's working hard to breathe. She coughs sometimes.  She cries... and more often than not, she gives a look at the Dr's and Nurses like the one featured above that I interpret as a very sarcastic, "you want to do what?!"

Monday, August 16, 2010

I don't need no stinkin' oxygen!!!

Andi is going in for heart surgery within the next two weeks, next week most likely.  It's a complicated surgery and we're scared as hell, but this one is probably the biggest surgery she'll ever have.  It has to be done.

Sunday, August 15, 2010

Reflux This!!!

Test results show that not only does Andi have reflux of the bladder (goes into the kidney and can cause UTI's), but her stomach reflux is aspirating into her lungs, causing the need for the oxygen.  So, we've put her on a different antibiotic, one that can work on both the UTI and the formula in the lungs.  We're hoping to get her lungs cleared and off of O2 before we bring her home.  Otherwise, in addition to the car seat, the diaper bag, the stroller, and her feeding backpack, we'll also have to tote a nice oxygen tank with her wherever she goes, even though her O2 intake is almost as minimal as you can give.

Reflux is apparently a very common problem in babies, Andi has it to the point of becoming an issue.  TREAT!  Her pediatrician started our conversation with, 'you know, she has a lot of problems!'  ugh, my heart sank.  But, he said we'll probably do the heart surgery sooner than later, as he feels that will alleviate a lot of her problems.  I believe that too.  Her heart is working so hard, that she's breathing so fast, that if we can get that fixed and to a more optimal pace, the feeding/digestion/reflux problems will likely go away.  In the meantime, we're going back onto slow, continous feeds, to help minimize the stomach reflux (even though she takes prilosec)... so she will constantly be tethered to her backpack.  Every parents dream, indeed.  But, the goal is to get her weight up and the slow feeds will give her as many calories with the least amount of resistance from her body. Again - we've gotta do what we've gotta do.

As much as all of this sucks, we can't forget that at the core of all of this is one of the prettiest, strongest babies I've ever seen.  She is a fighter.  She is smart.  She is super strong.  And she will overcome all obstacles and defy all odds, if nothing else because she is incredibly stubborn, just like her parents.  And to quote my own mother, "This Too Shall Pass."  I just hope it passes sooner, than later!

Friday, August 13, 2010

Today is not the day...

Butter bean is not getting released today, or likely tomorrow either.  Her pediatrician, who happens to be the Kaiser Attending Dr. this week, wants to find out why she needs the O2, even the little amount she gets... is it caused by reflux - with formula getting into her lungs?  Is it caused by the extra blood going to her lungs?  He'd like to get a few more answers as to why, instead of just shipping us out of here with a skoosh of oxygen for the bambino. They're going to do another chest xray to check out her lungs.  They're going to do a VCUG today, to check out her urinary anatomy, to see if that played a role in her UTI.  Yesterday, they did an echo cardiogram to see if her red & blue blood were mixing, causing the need for the extra O2.  So, we have some more tests to run, some more things to figure out, before they ship us out of this posh joint.  We're actually a bit relieved. 

We're lucky in that we have the most amazing pediatrician.  I really feel like he not only hears us, but advocates for us as well. I just wish he laughed at my jokes more.  I'd gladly settle for a healthy baby though.

Thursday, August 12, 2010

Kaiser Permanente Rent-A-Baby Program

In all my years, I never imagined I'd be signed up for the Kaiser Permanente Rent-A-Baby Program.  10 days or two days... take your pick.  When not being rented for imaginary full-time parenthood, the baby rests in the hospital, tended to by professional babysitters.  It's quite an affordable option to those whom just want to test out parenthood.  Unfortunately for me, I've always known I was destined for parenthood.  I knew it'd be challenging, but worth every minute.  I knew I'd be good at it.  I believe having two really great parents made me more likely to be successful at my own attempt at parenthood.  Never in a million years would I have thought that my baby would spend nearly all of her three months of life in the hospital.  It's quite disturbing, to say the least.  Worst than that, we haven't even had the most critical surgery yet, the surgery to repair holes in her heart.  She's had three surgeries in her first seven weeks of age.  This was definitely not in the parenthood brochure.  No parent should have to endure these seven levels of hell.  Despite all this, Andi is strong. Looking around this hospital, our situation could be a lot worse.  So, we march forward thankful for what we do have, and what we do overcome.  We march forward hopeful that soon we will be honored with some semblance of normalcy. 

It appears that Andi's urinary tract infection is being beaten by the antibiotics.  We're awaiting a few more tests, but the fever is gone and she's starting to look like herself again.  If all continues to go well, she might be checking out of this posh hotel again tomorrow.  See, we checked out last Friday and we were back in on Monday...  so, although we're repeating the Friday check-out, I'd like Kaiser to know that we no longer want to be a part of their rent-a-baby program, but opt for the purchase-a-baby program.  We're keeping her!!

Tuesday, August 10, 2010

Hospitalized, Again!

We're back in the hospital.  Turns out the diuretics they put Andi on last time, dried her out too much.  It will be a constant battle of fluid balance until the heart surgery.  However, she also came in with a fever.  Test results show that she has a urinary tract infection, so they put her on some new antibiotics.  Today, the fever spiked to 105. I was not pleased, to say the least.  She's on slow continous feeds, and she is finally sleeping.