Update on 2018...so far

I cannot believe that this is my first post in 2018!  That should tell you that Lucy is doing AWESOME from a health perspective.  So far this year, she has had some pretty high highs and some pretty low lows...I'm confident there were WAY more highs than lows though!!

HIGHS:
 - First Dance Recital
 - First Science Fair
 - Graduated from Kindergarten - how is my baby 6 already???
 - Family vacation to Pennsylvania - including Hershey's Chocolate World and the Turkey Hill Experience - so fun!!
 - Long weekend in Duluth - complete with Thomas the Train and a Water Park!
 - Swimming Lessons
 - Play dates with friends
 - Picnics in the park

LOWS:
 - Pneumonia (in June) :( (but a high point that we were able to treat at home and did not have GI issues with it!!)
 - 25+ missed days of school due to illness (2017 - 2018 school year)
 - Schoolwork challenges
 - Still a lot of doctor's appointments
 - A new doctor to follow-up with (pulmonology)
 - Ongoing maintenance medication

I'll post more about the new doctor we are seeing on a future blog.  Wish us luck starting 1st grade in a few weeks!!

First Day / Last Day of Kindergarten

A trip to the ER, but no hospitalization this time!!!

Lucy Sleeping on my lap while we were waiting in the ER

So we managed to avoid an in-patient hospital stay this time!  Here is a rundown of the latest issues Lucy had experienced:

 - Started throwing up Monday night - no indication she was unwell before that
 - We gave her a suppository and laxative at home (she threw up the laxative)
 - She was feeling much better by Tuesday afternoon
 - After an overnight at my parent's for Thanksgiving on Thursday, Lucy started throwing up again on Friday evening
 - We managed it at home with the same routine as Monday, but she wasn't able to keep any food down and very little water and Pedialyte; her throwing up decreased to a few times a day (instead of several)
 - I called her pediatrician, GI and Neuro docs on Monday and the general consensus was that it is a GI issue, but she should be taken in JUST IN CASE it isn't; GI wouldn't give any prescriptions for gut motility over the phone until she was seen in the ER
 - On Tuesday night, we put Ruby to bed and left her in my parent's care at our house and took Lucy to the ER where she had an abdominal X-Ray and an quick shunt series MRI...both looked fine and we were happy that she wasn't dehydrated enough to require an IV or admittance to the hospital.  We took her home with a prescription for Zofran (anti-nausea) and another call into the GI
 - On Wednesday, her GI docs prescribed a motility medicine for her to be taken daily
 - By Thursday, she was feeling better and eating some and on Friday she went to school for a few hours!
 - Now, she has insatiable hunger and is constantly wanting snacks, haha!

So, the 6 day cycle seems to reign true...it takes a while for her body to start "moving" again, but once it does, she is good to go.  We will continue her on daily laxative and motility medications for the foreseeable future.

We are THRILLED that we could treat her at home, but it was a tough week for all of us!!  It's hard to deal with the fact that we couldn't go on a field trip to the Crayola experience because Lucy was sick or that we couldn't decorate for Christmas like we planned because we wanted Lucy to participate when she could help decorate the tree, or that Lucy had to miss almost a full week of school and is sad when she has to go back because she wants to stay close to home, or that Ruby doesn't get to play with her big sister because she is too weak to get off the coach.  In spite of how proud we are of Lucy and her strides, these times of sickness are very difficult for our family, so we appreciate the prayers and kind words of encouragement from those of you who know about these episodes.

Prayers for continued PERMANENT healing for Lucy's GI issues are appreciated.

Another round of GI issues

Thowback to a happier day - outside with sissy!!

UGH!

Lucy is suffering from another round of GI issues.  She threw up on Monday night after seeming to be fine all day.  I gave her a suppository and she did have a bowel movement, but was pretty sleepy on Tuesday and still throwing up some.  By Tuesday evening, she was feeling better and we felt comfortable enough to go to my parent's on Thursday for Thanksgiving.

However, since we got home on Friday, she's been throwing up and has only had 2 small BM's, despite 3 suppository tries.  We have opted to keep her home for now but know she will need fluids soon as she hasn't kept more than a few sips of water and 2 popsicles down since Friday.  I am very hesitant to go to the ER and subject her to X-rays, ultrasounds, MRI's, medicine, etc. etc. etc. and am hoping to avoid it altogether this time.

I have no idea what is causing this, but have a theory that it might be related to chronic got motility issues.  Since school has started Lucy's normal food and digestive schedule has been thrown off, so I am planning to keep her on a maintenance laxative once she recovers in the hopes of avoiding this in the future.  The current bout does not seem to be related to sickness or infection.

It's so hard to figure out and super frustrating - I want to take it away and never have her be in pain again.  And of course, true to form when I was giving her a bath on Saturday night and crying because I felt so bad for her, she reached out of the bath to give me a hug and tell me not to be sad.  Seriously...rockstar 5 year old right there.

Esophagus Dilitation #24

Just a quick note to let you know that Lucy's dilatation on Thursday went well.

Her GI doctor said while the esophagus continues to grow together, he can tell it is at a much slower rate and was more open than last time (in December).  We are planning to go down to yearly "maintenance" so don't have to repeat until next August - woo hoo!

The coming out of anesthesia part was AWFUL!  She had a lot of trouble keeping her oxygen levels up, so ended up getting re-sedated, lots of oxygen and an EPI Nebulizer.  When we finally got to see her, she was still sleeping for another 2 hours and we were otld she may need to stay overnight...however, in true Lucy form, when she was fully awake, she pepped right up, asked for a Popsicle and was ready to head home.  What a champ!!  It was a long day away from baby Ruby, but she was well cared for by my parents while we were away - Thanks so much!!

No pics this week - I prefer photos of Lucy happy and playing, like her normal self, not sad and sleepy. :(

This week started all day preschool Monday, Wednesday and Friday for Miss Lucy...what a big girl!!!

Home, sweet Home!

It's amazing how good it feels to be home after being cooped up in a hospital for 4 days!

On Friday, we had a "wait and see" day at the hospital, the doctors had us meet with a few other teams just in case it wasn't an issue of needing to get her GI system on track, but something else...so we met with Neurology to review the results of a "Quick MRI" that they performed and checked her shunt settings - all looked fine.  We also met with the nephrology team - basically kidney specialists, in case you haven't heard that term (I hadn't before last week).  There was a concern that Lucy's blood pressure had been quite high while we were there - 130s over high 90s consistently, so sometimes the kidneys are the root of blood pressure issues.  In addition, Lucy had a heart ECHO to verify no new cardiology issues presented themselves since our last visit.  All checked out OK with nothing pointing to being the root cause of her issues...so we were back to the waiting game and trying to figure out how to stop the throwing up and getting her GI system to move again!  Throughout the course of the day, her blood pressure did come down to 110s of 70s on it's own (it surprised me to the point that I asked the nurse to recheck it..haha!!)


On Friday evening, they placed an NG tube down Lucy's nose directly to her stomach so they could pump a slow and steady dose of laxative into her stomach with the hope that it would get into her intestines and start the flush out her system.  After it was placed, she threw up one additional time, but then slept all night, until 4 am vitals were checked on Saturday morning.

During the 4 am vital check, we discovered that the laxative was working and her system was, in fact, moving again!  Never been so happy to see poop in my life!  We spent most of the morning in and out of the bathroom, as you can imagine but Lucy was feeling much, much better.  She had an orange popsicle for breakfast (the first "food" she had been able to keep down since Sunday, basically!) and was in good spirits when the doctors came by for rounds around 10:30 in the morning.  I was VERY pleased to hear that she could possibly go home by Saturday afternoon if she kept some food down and her system kept moving.

Being the complete rockstar that she is, she kept all her food down like a champ and we got discharged around 4:30 in the afternoon on Saturday.  What an awesome feeling to be back home!  Lucy was very happy to see all her toys and her own bed and comfort item (as was I!)

We spent today (Sunday) recovering and trying to keep things low-key...long naps, simple meals and catching up on life in general.  When an unexpected hospitalization happens, basically your life stops...you don't check the mail, or clean the house or do laundry or pay bills and have any idea what day / time it is.  I didn't even venture out of Lucy's room for most of her stay, until she was feeling better because I am her main comfort item - waking up without mama there would be traumatic for her in that situation...I got 1 shower in at the hospital and makeup and nice clothes weren't even a consideration - why bother then some type of bodily fluid would end up on them within minutes?

As always in these situations, some people in our lives really stepped up to show us their love.  Jason had to go to Iowa for part of the time (her hospitalizations always seem to coincide with a work trip for him...some are skip-able, but some, like this one, are not).  So, my parents made the trek down, brought their dog and a few extra clothes to our house and came and kept me company at the hospital for 3 days.  They cleaned our house - which we left in a bit of chaos, did laundry, brought me orange juice and homemade scones, made lunch runs to Davannis and helped distract Lucy so I could grab a shower or talk with the doctors.  My sister, Melisa, came down and left her toddler (FOR THE FIRST TIME OVERNIGHT!) and helped us get our stuff together to get discharged on Saturday; she brought games for Lucy and snacks for me and helped me get re-organized at home once we arrived.  What a wonderful blessing to have a support system like that to help take care of us so we can take care of Lucy in these times!

Feeling good enough to venture to the window with Grandma

Grandpa's turn to watch the traffic with our patient!

...and of course a HUGE thanks to all who reached out when you heard the news - your Facebook messages, texts, emails and phone calls are so appreciated and knowing that I could call on many of you to help with whatever we need is awesome!  We rejoice in the family and friends that we have here in Minnesota!  Ecclesiastes 4: 9 - 10: "Two are better than one, because they have a good return for their labor; if either of them falls down, one can help the other up."

I kept another throw-up / medication board for the staff...you can tell we tried a lot of things!)

Esophagus Dilatation #22

Melts my heart when she wants to hold my hand when she's "feeling kinda yucky"

Lucy's latest dilatation this week went pretty well.  The doc said that he could still get his scope through (a size "10"), but it was tight.  He dilated her back to a 15 and spent some extra time keeping the inflated balloon in her esophagus to get some extra tissue breakdown.  He's comfortable waiting 5 or 6 months until the next one (and so are we) in the hopes that eventually we can stretch it out enough not to require so much maintenance.

Her recovery was rough - it look her a few hours once we got home to stop throwing up but once she got the medicine out of her system, around dinnertime, she perked up.  She even felt good enough to see Great Grandma DeVries on Tuesday, who was visiting from Wisconsin this week!  She was very brave at the doctor and continued to show us what a strong, special girl she is!!

Four generations!

Meanwhile...we are preparing for Lucys' 3rd birthday next weekend...how did this sweet, sweet girl get to be so big????

First weekend of Summer!

Banging on the drum at music class

Here in Minnesota, Memorial Day weekend definitely kicks off the summer season...school is almost done for the year, cabins are open and people are out on the lake as much as possible.

Lucy's ECFE music class that we've been in all year finished last week - it's amazing how much the kids grew from September to May! We've been spending weeknights outside as much as possible and we spent most of the weekend of north, at my parents' house on the lake.  Lucy got a fishing pole from grandma and grandpa for an early birthday present and caught her first fish!!  She also invited her first friend to the park - our 4 year old neighbor boy - so sweet! :)

Racing up the slides!!

Swinging on the big girl swing!!  

On Friday, we are going to Colorado to see some friends and go to a NICU reunion!! I can't wait to see some of the kiddos and moms that we were in the hospital with and be able to take Lucy to some of our favorite Colorado spots!!  She has made such incredible progress in the past 2 1/2 years since we took her home from the hospital.  What an amazing little girl! Lucy is mainly excited for the hotel pool and the airplane ride! :)

Her next dilatation is scheduled for early June, almost 5 months after her last one!!  It will be very interesting to see how open her esophagus as stayed.  Her eating is going well.  I feel like just this past week I've noticed a few more "stuckies" than normal - but it's possible she's just been eating fast...lots of outside play time tends to increase the appetite, right?

Driving grandpa's boat!

Patiently waiting for a fish...

Got one!!

Being Lucy's Mom

I've said many times that this blog is about Lucy...to keep our family and close friends updated on her progress because we know you all care for her and love her and pray for her...and we appreciate that SO, SO much!  But today I want to share with you a link to a wonderful blog post (found at KevinMD.com) that captures so many of my thoughts and fears and feelings over the past 3+ years: Remember mothers of sick children. I was talking to my mom just this week about how having Lucy changed me in a way that I could never have imagined.  The blog writer, Courtney Schmidt, writes this about the mothers of sick children:

"They are faced with the harsh, unfair realities so they’ve been forced to clarify what is truly important to them. They know that the most precious parts of their lives may not be around forever, so they’ll appreciate every moment. Their child’s illness has given them a higher calling, a purpose in life that is beyond any desire they’ve ever had. They know exactly what they’re fighting for."

On a separate note, we've been enjoying springtime in Minnesota and Lucy is VERY excited to play with the neighborhood kids this year!

Full wagon for the playground today!

She would rather push than ride....

Play date at the park...running to meet her friend on the slide

An update on Lucy's TEF

We get asked a lot of Lucy can eat "normally" now.  The answer to that is still "no!"  Here's what she can eat:

 - Most cereal (Kix, Cheerios, Chex, etc.)
 - Crackers (Ritz, Saltines, Triscuits in small portions, oyster crackers, etc.)
 - Sliced cheese in small portions
 - VERY well cooked soft vegetables like carrots, green beans and peas, about 5 to 8 small pieces at a time, followed by a few swallows of liquid
 - VERY well cooked pasta rings, again about 5 to 8 at a time
 - Fruit bars, like Nutrigrain cereal bars
 - Anything that is naturally smooth (peanut butter, applesauce, yogurt with no fruit chunks, etc.)

Everything else we grind up for her in the most fabulous invention for a person with this condition...the hand-held food grinder!  We are forever in debt to my mom for getting us one of these - we use it multiple times a day and never leave home for a trip to a restaurant or weekend away with out!  We can't make a quick food stop at a fast food restaurant because most don't have anything that we can grind up for her to eat.  We end up going to places like Panera, Potbelly or Culvers if we are on the road and need to make a quick stop - because those places all have soup on the menu!!  Most of her main courses are ground up soups, pasta with sauce and veggies or whatever we are eating mixed with a liquid or sauce to make it smoother for her.

Our best friend...the handheld food grinder!

We try to balance letting her eat what she wants if we are eating it, with saying "no" to things we know she won't be able to handle.  Often we give her "tiny bites" of whatever we are eating, like the crust of a pizza slice, or a tiny piece of fish (think very tiny - like a mere crumb).

Lucy's esophagus is shaped like an hourglass, but the inside of it has a "shelf" of scar tissue.  Her entire esophagus had to be connected together when she was born, so there will always be a part of it that is 100% scar tissue and will never be as stretchy as the rest of her esophagus.  As she gets older and understand more (and has better self-control), she will be able to eat more "normally."  However some foods will always be hard for her to eat, like meat for example.

Here is an example of what Lucy's anatomy looked like when she was born.

We are so thankful that she is doing as well as she is.  We are also so thankful for the doctors and nurses that God has put in her life.  We haven't always liked everything about every one of them, but we are confident that they tried to make the best decisions for little miss Lucy and for that we are grateful.  I follow many stories of children born with VACTERL/TEF and there are some tragic endings to those lives and many, many children with feeding tubes, respiratory issues and many, many dilatations.

Despite everything Lucy goes through, she is still able to enjoy life...and let me tell you...this girl LOVES to laugh! :)

Fake sleeping at her first live theater event - we saw Goodnight Moon - what fun!

Truthfully, not that helpful to have an extra cart pushed by Lucy in the grocery store!

Esophagus Dilatation #21

Post-surgery recovery - still pretty out of it

 Thursday's endoscopy and dilatation went great!

Although the doctor was running about an hour late (Ugh - since we have to be there 1 1/2 hours before her procedure - that's a 2 1/2 hour wait before we even get her to the OR!), the day went pretty well.  They were able to dilate her esophagus to about a 15 (so around 5mm, I guess), which is the widest it has EVER been.  Prior to the procedure, we really didn't see any new eating issues so we are going to stretch them out (no pun intended) even further than our current every 3 months to 4 or 4 1/2 months - isn't that great?!?!

She did throw up a few times right before and after the procedure, but after a 3 hour nap when we got home, the anesthesia seemed to wear off to the point she was feeling good (and asking for dill pickles and chocolate chip cookies to eat!)  It's possible that she has developed a slight reaction to anesthesia now or that the stuff they use at the U is slightly different than at Children's, so I'll have to do some medical records research to see if I can find out what might be different.

I mentioned in my last blog that I was anxious about this procedure, so I was so, so happy to wake up on Friday and have Lucy be back to her normal happy (sometimes hyper!) self.  What an amazing, strong little girl...we just love her to pieces!

Recovering with a little Tea Party at home

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!!

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!