Merry Christmas!

From our family....to yours, we pray that you are all enjoying this wonderful Christmas season.

Probably the most popular gift this Christmas - a drum with real wooden drum sticks!!

Isaiah 9:6 For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. 

Loving the Holiday season!

We have had a relatively calm December.  Jason had a few work trips, and Lucy had just two appointments scheduled (eye doc - see last blog and cardiologist - scheduled for this week) .  Overall, we've been able to enjoy the weeks leading to Christmas and do some fun Holiday things.

Lucy likes to watch me do my makeup in the morning - look at this pose I captured of her checking herself out - so cute!!

Lucy's been a great helper decorating cookies (she is very good at adding sprinkles!), she got to meet Santa and see the elves help Santa get ready for Christmas at the Macy's 8th floor display in Minneapolis.  We went to Bentleyville in Duluth to see all the lights and she has even been leaving the presents alone!  In the midst of it all, we moved her to a big girl bed - no more crib for this toddler!!  Every once in awhile, we find her wandering around the house in the morning, but usually she stays in bed until we come to get her!

Getting settled in her bed!

 We hope you are also enjoy the holiday season and looking forward to 2015!!

Snowmen with no noses

Holding baby Dawson for the first time!!

Decorating for Christmas is tough with a toddler in the house.  Anything within reach of little miss Lucy seems to end up going down a slide, getting it's teeth brushed, eating dinner with us, smuggled in the bath or her bed or missing a nose (or a head!) eventually...like this joyful crew here:

They used to have carrot noses :)

Lucy' still doing great and her surgical site is healing nicely.  We had an eye doctor appointment with her this week and got a great report.  You may remember that kids with hydrocephalus often have sight problems because of pressure in their brains that presses on the optic nerve, so we have annual eye appointments to check for any changes.  She is not a fan of eye appointments, so thankfully it's only once a year.

We have been loving some warmer weather here in Minnesota and discovered that Lucy is a huge fan of sledding.  She has a giant grin plastered on her face basically the whole time she riding in it.  We don't let her go down hills by herself yet, but being towed around by someone is great fun to her!!

This is an indication of how cold it's been in Minnesota - mom and dad's lake is totally frozen over already!

We are trying to enjoy the season by planning some fun, seasonal things, balanced with having downtime to enjoy cookies, hot cocoa, Christmas trees, holiday movies and wrapping presents at home.  We hope you are able to do the same!

Cannot resist making a mess!

Happy Thanksgiving!

Lovin' on daddy...awwwww!

I love this time of year.  Thanksgiving is such a great holiday; the turkey, the pumpkin pie, the anticipation of Christmas, the 4-day weekend!!  For us, it is a reminder of that MAJOR life choice we made to move back to Minnesota 2 years ago...remember how little Lucy was then?

Jason and I were talking about what made our top things to be thankful for in 2014 list and really, the feeding tube removal tops all other things.  Even though it was incredibly painful (both physically for her and mentally for everyone else), it is such a HUGE milestone in Lucy's journey and we are thrilled with her progress.  That tube literally kept her alive for the first 18 months of her life when she could barely eat anything orally but it was a constant reminder of her physical challenges as well. 

Ice Cream and Movie night with mom (and yes, she can eat a whole DQ sundae)

She loves not having to get her dressing changed multiple times per day and to be able to be carefree about sliding down the footstool or the slide or the couch cushions.  There is an almost imperceptible difference in the way she carries herself and plays.  Most times I don't notice it, but every once in awhile, I marvel at how uninhibited she seems.

Using her dolly cradle for a bed...can't believe how tall she is getting!

We are looking forward to spending a long weekend with my family at my parent's house and hope that you all have a safe and happy holiday.

Thank you, as always for your continued love and support...never forget to be..."joyful in hope, patient in affliction and faithful in prayer" (Romans 12:12)

Healing

We have been home from the hospital with Lucy for a week now.  I for one, am feeling MUCH better than I was a week ago!  Life has returned to normal for the most part.  Jason and I are thrilled that we don't have to change leaky dressings anymore and Lucy is getting used to her new, flat tummy! She pulls up her shirt often and looks at the scar and says, "No more Tubie?!?"

She is doing great - if I hadn't witnessed the entire hospital stay, I never would have guessed how sick she was last week.  It is amazing how quickly the body can right itself when something is wrong.  I cannot help but go to Psalm 139 at this time and remember what it says in verse 14: "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."  

Here are a few things that I learned or was reminded of last week:

 - Doctors do NOT know everything.  We heard from doctor after doctor theory after theory about what might be wrong with Lucy.  When we were discharged, we were told so many times that they cannot believe her recovery and still do not know what caused her to be so sick.  It's tough to take as a patient, because we do expect doctors to know what is wrong and FIX US!!

 - Doctors have a distinct advantage over patients and their families due to sleep alone.  In the hospital, nurses typically come in every 4 hours to check vitals, lab techs come in before 6 am to get blood so docs have results before morning rounds and residents come to the room shortly after that.  Also, when Lucy was throwing up every hour, I would wake up for that!! While Lucy slept through some of the conversations, I could not!! As a parent, sleeping on a vinyl hospital couch, all of these things happen right around the time you are FINALLY drifting off to sleep.  If you try to catch a quick nap at any point during the day, or grab a shower, the doctors are magically notified and come to update you on something.  By the end of a week in the hospital, I considered Jason's white tee-shirts dressy enough to wear for the day and decided washing my hair in the sink with hospital soap was probably all the hygiene I needed to get me through...I was looking a little rough, to say the least!! :)

 - My friends and family are AH-MAZE-ING!  I am still overwhelmed with the calls, emails, notes, care packages, gift cards and prayers that people sent.  It is tough to give myself permission to take care of myself when Lucy is so sick, so these things literally get me through the day.  THANK YOU from the bottom of my heart - I love you all!

 - Without faith, I would be broken.  Jason and I need to stay positive during these situations and cannot let ourselves think worst case scenarios.  However, there was a brief moment when I wondered if I would ever get my little Lucy back or if something really bad had happened in surgery that would impact her life forever.  The first night after her surgery, before we were admitted to the hospital, I slept on the floor of her nursery and prayed my heart out to God to restore her health.  I could only sleep when I pictured a Guardian Angel standing over her crib protecting her while I slept.  It was as if God told me to rest because He was watching over her.  One night in the hospital after several throw-ups, Lucy and I sat on the couch and we prayed "Dear Jesus, No more throwing up, please. Amen."  I promise you that He gave her a long spell of relief after that sweet, sweet prayer.

 - I was reminded again of how resilient Lucy is.  What an amazing child who has the ability to charm the pants off any medical staff within a 50 foot radius, even when she can barely talk.  When she was having various procedures done, like tubes put in and taken out, I would hold her and tell her how brave she was, over and over.  Before long, she would say it with me, "mama's brave girl, mama's brave girl."  Heartbreaking, really...

Uffta - that got a little bit raw, not my intention at the beginning of this post.  Now that we are home we are enjoying winter, which came over the weekend to Minnesota - not sure I'm ready for this yet!!

Home, Sweet Home!

A picture from Monday, when she was feeling good enough to play :)

After what can only be called a miraculous recovery, Lucy is home!  She was discharged last night and the three of us could not be happier!

The doctors are still stumped as to why she was so sick and why she got so much better without too much intervention on their part (actually, she got better when they STOPPED messing with her). Her recovery really started in earnest on Sunday night, after she had an enema (sorry, honey!!) to clear things out of her intestines and had the feeding tube removed from her nose (it was looped through itself a few times and part of it was looped in her lower esophagus, so must have been very irritating to her).  She had a good night on Sunday and then very slowly started perking up on Monday and began eating somewhat normally on Tuesday.

This is Lucy's "Throw Up" board that I kept for the docs and nurses at the hospital

Today, she is a little slow and still somewhat off balance but otherwise is back to herself.  SO HAPPY!

As always, thank you for your continued interest and encouragement throughout this journey.  Your calls, emails and texts mean a TON to me and Jason and we appreciate them so much.  And a special shout out to mom and dad for coming down to stay at our house and clean and do dishes and keep me company at the hospital so Jason could go to Philly for a work trip (at least he wasn't gone the whole time this time!!)

I'll write more later about how she's doing now that she is home and fill you in on some of the details of the last week later on.

Stumping the doctors is not a good thing

So we are still at the hospital - no trick or treating for little Lucy! :(

The doctors are somewhat baffled as to the issue.  Thankfully, she has stopped throwing up so much, due to a combination of medications and a venting tube placed into her stomach.  Yesterday, it was only 2 times that were not due to other irritants (coughing fits or docs trying to put another tube down her throat).  The have placed an "NJ" tube through her nose, bypassing the stomach and sitting at the top of the small intestines.  The goal is to get food in her that will not be thrown up and get her digestive track moving again, in the hopes that any pressure, etc. left over from anesthesia and surgery will dissipate.

It is possible that having a G-tube for long masked (or created) a different problem related to her stomach emptying into her small intestines which could require a surgical repair (Gastroparesis).  So really a lot of theories but no solid diagnosis. :( The waiting is difficult, to say the least and she is still very lethargic - basically moves from the bed to my lap and back.

We will keep you posted as we know more.

Thank You for your continued prayers.  I'll leave you with a throwback photo from last Halloween :)

Back at the hospital

At least she LOOKS relaxed when she is sleeping.

Lucy did have her endoscopy and feeding tube removed on Tuesday - she's all stitched this time, so NO LEAKING!  However, she has had persistent vomiting since we took her home on Tuesday afternoon, so we packed her up on Wednesday morning to go BACK to the hospital and will remain here until they can figure out the issue.

She is not responding to anti-nausea medicine very well (so far today she has thrown up 17 times) and doctors are stumped as to the root cause of the problem.  We've had a battery of tests to try to determine the problem but far everything has come out OK.  She is obviously very tired and weak and is on IV fluids since nothing stays in her tummy for more than a few minutes.

It's pretty rough to see her so listless and uninterested in life with no clear path as to how and when she'll be back to normal. :(  Prayers for all of us and for wisdom for the doctors to help us clear this last hurdle!

I'll keep you posted on her progress.

2nd Opinion

Sporting a birthday crown she decorated at ECFE's 40th birthday party!

Wow!  This week we celebrated Lucy's 2-year anniversary of being home from the hospital!  What a difference 2 years makes!  She has been feeling great and has tons of energy to use up running around the house, the yard, the neighbors yard, etc.!

Taking Lucy home 2 years ago!!

Cake and markers - not enough hands!!

 We also had our 2nd opinion visit to talk about removing Lucy's feeding tube.  So glad we pursued finding a new doctor!  Her previous GI doctors were a referral from our pediatrician at Children's Hospital, but they are not actually a part of Children's. However, the surgical team IS a part of Children's.  It is pretty clear that for a patient like Lucy, we need serious coordination between the GI doctors and the the surgeons which we NEVER had before.  As Lucy's advocates, we definitely could have (and probably should have) pushed harder to get the two groups to coordinate, but until the disaster that was her feeding tube removal, things were OK so we didn't feel a strong need.  Now that we understand what can happen, the right decision for us, was to find someplace that has tighter coordination.

This week, we saw a GI doctor at the University of Minnesota and while we was talking to us, he said that he thought a surgeon was rounding in that clinic today, so we invited the surgeon in to have a look and said they would talk about Lucy's case at their next joint meeting!!!  What a change from the previous GI doctor, who told us to "call the surgeon because there is nothing else I can do."  UGH!  Overall, the visit went great and they had some long-term options for us to consider if on-going dilatations do not seem to be working for Lucy.  So, we are having her next endoscopy performed at the U of M this week with possible G-tube removal and site CLOSURE if the surgeon thinks it is possible to do as outpatient.  Oh, and do you remember back when Lucy was in Denver and we considered transferring her to MN?  This surgeon is the same one that would have performed her original surgery if we had actually been able to make that transfer happen, so I was already familiar with him and his work (arguably, one of the best in the country and well-known in this field).  Feeling God's guiding hand and infinite wisdom in this 2nd opinion!!

Prayers are welcome and we seek to be patient and understand what's next in this journey.  I am hopeful that in the next post I will be able to share with you that Lucy's feeding tube is OUT FOR GOOD!  But it not, I am confident that this new team will help us get there when the time is right.

My view when taking Lucy for a walk!

Fall Fun!

 

Fall in Minnesota has been gorgeous this year!  We have been able to enjoy lots of outside time on the weekends and even visited a pumpkin patch with Grandma and Grandpa this weekend!  (In case you are wondering, the super cute Candy Corn hat was made by my very talented sister, Jenny.  We get tons of people telling us how cute it is! :))

We were so excited to meet my sister, Melisa's new baby Dawson this weekend, too!  He is beyond sweet and makes Lucy look like such a big girl!  Lucy is no longer the youngest cousin/grandkid on my side of the family, but I think she like baby Dawson!!

This week, we (finally!) have our 2nd opinion visit at the University of Minnesota and are looking forward to moving forward!  I'll post about the outcomes as soon as we know something.

October will be a better month...

Love her curls!

It has been over a month since Lucy got her feeding tube out (and subsequently put BACK in...UGH!).  I would say she is fully recovered - it took several weeks for her skin to get back to pre-leaking condition and for her to allow us to change her dressing without saying, "No, No, No!"  Her digestive system was completely screwed up for a few weeks as well, but she is finally back to normal eating...and all that goes along with that.  Her mood is also back to her standard, sunny self.  For several weeks, she was not very agreeable with ANYTHING we suggested - partly from being given everything she wanted for a few weeks, just to keep her mind off of her pain and partly from still being in pain for awhile, I think.

We have an appointment with the pediatric gastroenterology department at the University of Minnesota in 2 weeks and an appointment for her regular dilatation at the end of the month (but NOT with her previous GI doctor - one of his colleagues).  So, we are really back to the waiting game, focusing on healing, getting over bitterness (me, not Lucy:)) and making a go-forward plan for getting Lucy's tube out once and for all!.

Lucy has been talking up a storm, practicing her counting, meeting new friends at her ECFE music class, building forts, collecting leaves, learning to do "chores" (she is a big fan of setting the table - most thing end up spilled somewhere between the counter and the table, but it's a start!) and getting outside when it's not rainy or too cold.  She even spent 2 nights with just daddy while I went out-of-town on a work trip.  What a big girl!!

iPad time in her fort

Layers of pink and purple to fend off the fall chill at the playground

Peek-a-Boo!  Can you see Lucy?

Thank you for your continued prayers and interest in Lucy's journey.  She's a very special little girl! :)

In loving memory of Great-Grandma Los

Today was a funeral for my Grandma Los. What a wonderful, caring woman she was. I am so happy that Lucy got to meet her. She LOVED Lucy and was so excited every time that we came to visit. Her health has not been great the past few months but man, when Lucy was over she had a new zest for life that had her out of her favorite chair and trying to get on the floor to play with little Lucy!!  She was a faithful blog reader (thanks to my mom, who printed them out for her!) and a prayer warrior for all of her family.

We will all miss her fellowship, coffee time and prayers on our behalf!

Lucy is feeling great and is basically back to her normal self. We have not downsized her button yet because her current one is still pretty leaky. After taking a much needed week off of doctors, I think I have the energy to pursue second opinions next week and make a plan for  getting rid of her feeding tube once and for all!!

Home!!

Happy to be able to swing again!

 We are home and are so thankful to spend a quiet weekend here!!  Lucy was discharged yesterday afternoon.  Since she had a feeding tube back in and we've taken care of a feeding tube and sore skin for years now, there was really no need to keep us.  So, we are basically back to where we were 2 weeks ago.  Lucy has a feeding tube that we aren't using and her skin is more irritated than it was before!

The plan is to downsize her button later this week to allow her opening to close some more on its own, without having such a gaping opening that will cause her to lose all of her nutrition.  From there - we shall see!  I was just so happy to leave the hospital and not have some other "trial and error" solution provided.  UGH!

She is feeling good and is about 95% of the way back to her old self - BEFORE the tube was removed and we were dealing with the massive leaking.  What fun we had during our tea parties, playtime outside and fort building today!  A special visit from auntie Melisa and uncle Tony complete with fun new toys, family dinner and a walk to the park was a great way to welcome Lucy home last night.  My parent's stayed over last night to make sure everything was OK and then headed back home this morning (for the first time in over a week for my mom!). 

Again, a huge thank you to everyone for keeping us in your prayers.  It has been a tough couple of weeks around here with Lucy not able to do most of the things she loves (jumping, swinging and eating!!).  I absolutely could not have handled the situation without my mom's willingness to stay and help distract Lucy during painful bandage changes, selflessly relieving me at the hospital so I could sneak a shower or cup of coffee and generally just being around for support.  Having my dad join her for the past few days to help share the load was a huge help as well.  As my wise friend, Karly told me this week: "Thank You for giving me the opportunity to help."  She's right...sometimes it is very difficult for us to ask others to help us, but often many people in our lives are more than happy to do whatever they can to help us share our burdens. 

Admitted to the hospital

Patiently waiting on grandma's lap.

After a week of barely keeping any food in her tummy (because it came directly out through her feeding tube site), very few wet diapers, NO dirty diapers and major, major skin irritation, Lucy was admitted to Children's Hospital in St. Paul on Tuesday evening.

I am so grateful that she is here and is safe and that the doctors are finally listening to me that this is not "normal."  But I am beyond frustrated that this happened at all.

On Tuesday, we went to the surgeon's office to consult on the issue.  He saw her and the diaper we were keeping around her to keep her dry and referred us to the ER to have a tube put back IN to her stomach, stating basically that her skin was in such bad condition that it would not be a good idea to close the site up surgically at this point, but that it needed to be closed when her skin had healed.

So, we headed to the St. Paul Children's ER and this is what we saw:

UGH!  I am not even sure how long we waited, but it was a while.  After many doctor visits and calling GI, who said, call surgery, we were eventually admitted as in-patient in order to give Lucy IV fluids and monitor the amount of food that was actually coming out.  They ended up putting on a colostomy bag to catch the stomach contents and quickly realized that most was immediately coming back out directly into the bag.  Note that I had called the GI doctors 6 days prior and told them that, then again 4 days ago, then repeated everything to pediatrics the prior day.  So, feeling good that the doctors are listening, but so frustrated that is has taken this long.

In some ways, being in the hospital is better than being at home, because Lucy's care needs so intense that we were way out of our league on our own.  So there is comfort in knowing that she is getting the care she needs to be back to herself.

On Wednesday, we had the pediatricians and GI doctors aligned that once her skin was healthier, it should be surgically closed.  However, for some unknown reason, the surgical team is still adamantly refusing.  They state that although this much output is abnormal, these sites normally close on their own and should not need intervention if we give it enough time.  Their first solution was a different type of feeding tube that goes through the nose and directly into the intestines.  The thought was that it would allow her stomach to be empty and then the site would be more apt to heal on its own.  The catch - no food orally until it heals.  I really couldn't believe this was a viable option in their mind.  I mean, we have literally dedicated 2 years of our lives to getting Lucy to the point of eating and loving food and NOT needing a feeding tube so to throw that away is ridiculous to me.  Let's just say by the end of the conversation, they knew my thought on it.

Never lost her appetite through this all!

On Thursday, with the surgery team still holding out that they will not perform surgery and her stomach still leaking most things out, the inevitable decision was made to put a feeding tube back in. So, she has basically the same tube in her stomach as before, except one size smaller (think fractions of a millimeter smaller, here, nothing drastic)

I am beyond upset that we had to get to this point after 10 days of putting Lucy through the ringer.  We are in a worse position than we were before and I have no clear answers from the doctors how they expect to transition her off of the tube.  I am very glad that she is able to hydrate on her own again and does not require an IV. At this point, I don't know if her stay in the hospital will be days or weeks long (I really doubt it will be weeks though...)

Checking out the view from her hospital room.

THANK YOU to everyone who has stepped up with phone calls, texts, offers to feed us, rides home for my mom, visits to the hospital and prayers for us this past week.  I could not have handled the situation without you all.  Having Jason across the world and trying to keep him in the loop has been tough and I know that he's having a tough time being so far away and out of contact with us for much of the day.

Lucy is doing really well now.  Her skin is healing nicely and she is happy to be free of her IV.  She is charming all the doctors with her cute little descriptions of the stoplights outside and their cool scrubs as well as her rockstar pigtails!  A silver lining to this situation is the incredibly sweet bedtime that her and I get to have in her hospital bed, where she tells me stories and describes her day and we giggle and play peekaboo until she finally falls asleep - despite a colostomy bad on her abdomen, an IV in her hand and seeming constant vital sign checks by the nurses.  Have I told you lately how much I love this little girl?

Update on Feeding Tube Removal - Not doing great

The only thing that occupies Lucy and keeps her happy for a brief moment.

It has been almost a week since Lucy's feeding tube was taken out.  In my previous post, I said that Jason and I were drastically under-prepared for the aftermath of tube removal.  That was an understatement, unfortunately!  This has been one of the longest weeks of my life and I think Lucy has cried more in the past week (and probably me!) than she did in her first 2 years total.

Here is a rundown of what's been going on (I apologize in advance that some of this is graphic):

Wednesday:
Jason is leaving for Tashkent, Uzbekistan today leaving me on my own, with the help of our wonderful, capable, patient nanny.  By 8:30 when the nanny arrives, Lucy and I are in tears.  Lucy's opening continues to ooze at her site and she is clearly uncomfortable and crying.  I am unable to comfort her.  We finally get her calmed down enough to eat breakfast but most of it ended up coming right back out through her opening.  There are moments of calm in the house, but Lucy is only comfortable when she is laying in my lap or her mind is preoccupied with YouTube videos.  We both smell like vomit ALL THE TIME.  I call the GI doctors who took out the feeding tube to see what they think about all the leaking.  Their response is that it can take several days to close up and that I could try to put Maalox on the wound to give her some relief.  My mom offered to come help if I need her, but it HAS to get better, right?

Thursday:
Lucy doesn't sleep through the night anymore.  I forgot how rough it is to wake up to a crying baby in the middle of the night.  She wakes up and her dressing is saturated from stomach contents and her site is very sore, probably from her scratching it in her sleep.  I've discovered that putting a diaper around her midsection helps keep her somewhat clean and protects her middle from inadvertent scratching.  When she wakes up in the middle of the night, she is awake for a minimum of 2 hours so we have lots of middle of the night cuddles, songs, books and cartoons.  During daylight hours I quickly realize that I need my mom.  So, I send her a text and she re-arranges her schedule indefinitely to come down and stay with us.  Seeing grandma and grandpa is a welcome distraction for Lucy.  Her pain level and leaking is pretty much the same as yesterday.  Her skin around the site is raw and almost looks burned from the constant exposure to stomach acid.  We try to get acid reflux medication and Tylenol in her, but so much of it leaks out I'm not sure how helpful that is.  I am worried about her getting dehydrated.

Middle of the night chilling with mama

Friday:
Up in the night again...so nice to wake up and have mom in the house though.  This is truly a full-time job for 2 adults.  I am trying to get work done as much as possible when Lucy is calm with the nanny and my mom or when she is sleeping.  I went into the office during her nap today for a meeting and ended up blubbering to 2 of my co-workers who just asked me how I was doing.  Perhaps working from home is a better option for me right now.  It is just SO, SO incredibly hard to see Lucy in pain and continuing to leak and not to be able to do anything for her.  The doctors seem to be no help and after talking with them I feel like I am being overly sensitive and need to just suck it up.  If it were me, I would do that.  But it's an innocent little 2 year old. 

This morning I called the GI doctors again.  They finally called by back at around 2 with a recommendation to go to the ER if Lucy was getting dehydrated and a referral to surgery to determine if her site needed to be surgically closed.  I called surgery immediately but got voicemail.  Of course, they called me back after office hours and their recommendation was to put the tube back in or take her to the ER if her pain seems unbearable.  They also stated that it was normal to take awhile for a hole like this to close.  Can you believe it?  I was beyond mad at the lack of empathy by both offices and seemingly lack of due diligence to provide any level of care for Lucy.  Oh, and one of their pieces of advice was that stomach contents can ruin clothes so to watch for that.  I'm like - REALLY?  I am barely functioning and everything in our house has a faint smell of vomit.  I went to CVS with a giant spot of it on my pants.  Do you think I care about the stains on her clothes or my clothes or the carpet?  Talk about out of touch with reality.  UGH!

Saturday:
Day seemed to be going better until mom called me while I ran to Target during Lucy's nap saying that Lucy woke up completely inconsolable and in a lot of pain.  I turned around and went home to finding a crying baby and grandma :(  Seems like when she sleeps, her wound dries out the tiniest amounts and then cracks and bleeds and is very painful.  She continues to soak through all gauze and dressing that we try and while eating soaks through at least one Size 4 diaper to the point that her clothes are wet as well.  We are doing laundry every night and she's wearing between 6 and 12 outfits a day.  I stopped changing my clothes because I am too exhausted to care.  Tonight Lucy woke up for the first time before I even went to bed.

Sunday:
We seem to be in a bit of a groove around here.  We wake up slow and Lucy sits on my lap until her pain is tolerable.  Then we get a dry dressing and sit at the table.  Her first glass of liquid with any meal is always painful, because it just runs out of her opening.  Then it seems to get a little better and we spent mealtime holding her tummy, coaxing her to eat and playing on the iPad.  It takes about 1 1/2 to 2 hours per meal.  We were able to take a break today to throw my sister, Melisa, a baby shower.  Lucy slept through all of the shower except the last 1/2 hour, when she woke up very upset.  She was happy to see Melisa and Ashley for a few minutes though and again, other people are a good distraction for her (and us!)  I am counting the minutes until Monday when I can talk to the doctors again. 

Monday:
I called our healthcare concierge service through work and the RN agreed that Lucy's situation doesn't seem like normal healing to her.  She told me that a doctor HAD to see Lucy.  It made me cry from relief to hear another person in the medical profession agree that I wasn't crazy and that this is not typical.  We also got in to see the pediatrician today (ours was gone, but we at least got to see a doctor).  We left with another referral to surgery and come additional cream to try.  They didn't work.  I'm not surprised.  Lucy has lost over 2 pounds since last week - that's like 10% of body weight.  Amazingly, we were able to get a surgery appointment for tomorrow morning (in Minnetonka, but at least we don't have to wait until their next opening on the 23rd!).  Glory to God for his small victories!

Again, I certainly did not understand that this would be such an intense healing process.  I was expecting it to close on its own within a matter of days or to have it stitched immediately up if it didn't.  I did not anticipate the FT care that Lucy would need to keep her clean and dry and somewhat hydrated. If my mom wasn't here, I would literally never be able to shower, or eat or get the supplies Lucy needs (I think we've spend about $250 out of pocket in medical supplies this week, from tape and gauze to Pedialyte and new creams and ointments).

If the surgery consult tomorrow ends with another doctor telling us to wait it out because it will close on its own, I already warned my mom that I am not responsible for my actions.

A huge thank you to all who know part of this saga who have been praying for Lucy and us.  We feel your prayers and they carry us through the moments of intense pain, screaming and crying and exhaustion.

We will keep you posted on how tomorrow and beyond go.

THE FEEDING TUBE IS OUT!!! (and Esophagus Dilatation #19)

Outtake from 2-year pictures...so sweet!

Lucy's Feeding Tube is out.  The procedure went very well, as did her 19th dilatation.  We are going to move from 6 to 8 weeks between dilatations going forward, so that is great.

Pre-surgery car race in the hallways of Children's!

In case you are not familiar with Feeding Tube removal procedures, they do not stitch up the patient afterwards.  The thought is that the stomach and opening from the Feeding Tube button will heal up on its own after a few days.  Jason and I were drastically under-prepared for what this would mean.  The past 36 hours have been a blur of crying Lucy, major messes from a gaping hole in her stomach, laundry, more gauze and tape than I could ever count and a very emotional household.

I'll post more details about the procedure and aftermath later when I am able to have a more optimistic perspective.

Bottom Line:  Lucy is the strongest, bravest little girl I know and I tell her that countless times a day.  This too shall pass!  What does Romans 12:12 say?  "Be joyful in hope, patient in affliction, faithful in prayer."  this is a season for all three!