Pass/Fail

Hannah has had an esophagram and 3 swallow studies.  Both tests are fluoroscopic exams, meaning an xray is taken at 30 frames per second while she  drinks flavored barium, which shows up on the xray detailing digestive structures and the swallowing process.

When Hannah was 6 days old, she had an esophagram, which checked for an atresia or fistula in her esophagus, and it was discovered that she had a stricture of the cricopharyngeus.  A couple of weeks later, when she was about a month old, she had a swallow study to see if the dilation and Botox had been effective.

A swallow study is different than an esophagram because it looks at the functioning of the swallowing process including the palate and tongue and epiglottis. During a swallow study, a speech language pathologist or occupational therapist will usually administer barium in several thicknesses to find out what is the safest way to take food by mouth for a person with swallowing difficulty. The thicker the liquid, the slower it moves and the more it sticks together going down (or coming back up- it's also used for individuals with severe reflux).

You and I drink thin liquids such as milk and water and juice. Then there is nectar thickness, honey thickness, and pudding thickness. Pudding thickness is not a liquid at all, and you have to eat it with a spoon. Nectar thickness is hard to describe since I don't think I have ever actually seen nectar, but it's viscosity kind of reminds me of paint. Half nectar is halfway between thin liquid and nectar thickness. In Hannah's first two swallow studies in December and March, she never got to try anything besides thin liquids because she failed the study immediately by nature of not being able to pass liquids through at all past the esophageal blockage.  It was obvious that it was not safe for her to take any food by mouth. This is why she had the NG tube for 4 months.  So for several months we waited to see if anything would change in her esophagus; if the botox would ever take effect, or if she would somehow outgrow the narrowing (which as you call I thought was highly unlikely). The same thing happened in her swallow study again in March, after which the surgeon agreed to do surgery.

So on April 9th, Hannah had her post-op swallow study.  While she had been successfully getting all her food by mouth for almost 2 weeks at that point, it was still important to document that the surgery was a success and make sure that she was swallowing safely.   

Here's where we pause for a brief anatomy lesson. When you swallow, the brain sends signals to your mouth and throat to know what to do, and a series of muscular contractions takes place.   Your epiglottis covers your airway and the entire voice box kind of moves out of the way for the swallowing process to take place. If liquid or food goes past the epiglottis and into your airway, this is called aspirating. If the liquid goes past the epiglottis and partially into the voice box but not down the airway, this is called deep penetration and it is dangerous. It is understood that babies who have deep penetration when swallowing will eventually aspirate. If the liquid goes into the epiglottis and back out again without going into the voice box, it's called shallow penetration. While not ideal, shallow penetration is considered okay.

Back to Hannah's swallow study on April 9th. She didn't fail right off the bat like in the first two swallow studies, but she didn't really pass either. There was no stricture anymore, which means the surgery worked! But within seconds of taking thin liquid, she aspirated and didn't even cough. This is called silent aspiration, and you would not know it was happening unless you were watching it on  an x-ray.  If you drink too fast and it goes "down the wrong pipe," you cough because you have just aspirated.  Hannah didn't seem to notice and she coughed a minute or two after the fact. Even though her cough was delayed, it is still a good sign because she is learning that her airway needs to be cleared.

The next step was half nectar thickness, and she had deep penetration of the epiglottis. Still not safe.  With full nectar thickness, she did okay and had only shallow penetration, and we are calling it a win.

Before we did the study, I had suspected that there was a little bit of aspiration happening because she often would have a wet cough after having her bottle, but I wasn't too concerned because she was not in distress or getting sick.  Of course, had she been turning blue or starting to have a fever I would have stopped oral feeds immediately and put the tube back in. She has had an uncoordinated feeding pattern and an ineffective cough simply because she hasn't had much experience with eating.  We will reevaluate in three months.

The current feeding protocol is to thicken Hannah's milk with gelmix to nectar consistency. The slower moving liquid will allow her more time for the brain to signal what to do, and those muscles will get stronger.  She still gets the same volume and the same amount of calories.  In order to thicken like this, you first have to heat the milk up to 100 degrees (thank goodness for the bottle warmer! How have I not had this before?), Then we add the powdered formula for calorie fortification and mix well, and then several scoops of Gelmix which is a carob bean powder and mix again. Then you have to let it sit for 5 to 10 minutes while it thickens to a nectar consistency.  (especially hard to do with a hungry baby screaming at you). This process takes twice as long as just heating up a bottle, the bottles are harder to clean, and the gelmix is expensive.  The first container that I bought was $23 and lasted exactly one week. This method, in addition to exclusively pumping for 5 months, rates about a 4 out of 10 on the "convenient" scale.  I'm not entirely sure how we will ever go anywhere for more than 3 hours, because I would need to bring so much gear in order to prepare her bottle.

Last month our new challenge with finally having oral feeds was spitup.  This month's new challenge with having thickened liquid is constipation! Within a day or two of starting thickening, Hannah started to have a lot of discomfort pooping, so now we have to add prune juice to her milk several times a day.  We are still working on finding the right balance of all of these new elements.   The milk has to be thick enough to be safe to swallow and the nipple has to have a fast enough flow. We had level ones and twos and it was taking her 30 minutes to drink a bottle and she would get frustrated that it was taking so long or get tired and fall asleep. Then we have to give her just the right amount of prune juice (also thickened) to help her poop.  But not too much!

Although the new protocol is not ideal, we can handle it. I didn't even ugly cry when I got to my car after her study!  We are glad she is out of the woods, off the feeding tube, growing, and able to take all her food by mouth. And even though the feeding tube is long gone, after having listened to that feeding pump beeping at all hours of the day and night for 4 months, we still hear phantom beeping all the time.

All ready for her swallow study.
That's an x-ray machine on the right!

Tubeless

She's a hungry sweetheart.

It has been a little over 3 weeks since Hannah's surgery. At 9 days post-op she started taking a bottle and 11 days post op her tube came out for the last time, although we didn't realize it would be the last time.  She has been tubeless and has been getting all her food orally ever since and is gaining weight beautifully!  She will take three to four ounces at each feeding. What a miracle! She's getting plenty of calories and is finally filling out with chubby cheeks and plump thighs.

She prefers to sit almost
straight up while she takes her bottle

She has gone from the 5th percentile for weight on surgery date, to 15th percentile after a week and a half, and now she's in the 23rd percentile!  She has outgrown all of the newborn sleepers and is wearing 3-6 month clothes now. Hooray! It's incredible!

She has also grown a lot developmentally in the past few weeks.  When she had the tube, she didn't get much tummy time because it was so easy to pull the tube out and it was literally tying her down positionally.  Since becoming officially tubeless, she has more freedom to move around and she doesn't hate tummy time anymore.  She is able to lift up her head much better than before and is rolling over from her front to her back! She seems to really enjoy the change of scenery and the ability to move more freely. 

You can see the incicision site
on her neck here, healing very nicely.

During the day, Hannah is incredibly peaceful and happy. Once she is changed and fed, she is very content to sit in her vibrating papasan chair and watch wide-eyed the goings on (aka chaos) happening all around. She will chill there for over an hour at times without a peep.  She always returns a smile when we engage with her. She likes having something to look at such as a mirror, toy, or mobile and she is starting to reach for things. She can almost get the binky to her mouth. She loves peek-a-boo, especially with her big brother. We can almost get her to laugh, too!

Hannah is still sleeping incredibly well at night. She usually sleeps from 8 to 10 hours every night!  Sometimes she gets fussy around 4 or 6 a.m. and will take a bottle and go right back to sleep. She still loves the binky of course. 

Hannah and I have been going to Riverton weekly to see her feeding therapist.  Last week we were working on strategies to try to nurse again. Hannah has established a safe feeding regimen with her bottle, but I would really love to nurse again if possible, and I feel confident that Hannah will, I just don't know how to get us there!  Kristin gave me some ideas, but Hannah just isn't interested yet.  She arches her back and pushes away and cries if I try to get her to nurse.  Before each bottle, I try to see if she will latch on, but three strikes and I have to stop trying. We don't want to reinforce negative stimulus and cause the aversion to get worse or be traumatic. I'm determined to keep trying though. Maybe at some point I will a have to accept that it will never happen, but I'm not ready to throw in the towel yet. It would make life so much easier for me and save so much time to feed her directly than to pump 4-5 times a day in addition to bottle prep, bottle feeding time, and then washing all the supplies. 

Having no tube has made life so much easier for Hannah and for the rest of the family. It's so much easier to go places. And with Spring finally here, we are able to leave the house more and not have to worry so much about getting sick. I felt like a hermit all winter. We finally took Lexie and Hannah to church yesterday; a whole family of 7!

Church from 1-4pm is so hard!

Tender Mercies

Look Ma!  No Tube!

A tender mercy is a personal and timely blessing from God. It may come unexpectedly, or when you feel like you need it the most.  It speaks to your heart that God knows you and can hear your prayers. 

Two days post-op when we saw Hannah's feeding therapist, Kristin, the feeding protocol was nothing more than dipping Hannah's pacifier in milk and letting her suck it off. That was all she would take by mouth. If I tried to give her a bottle, she would straighten out and arch her back, cry, and turn away. We knew that we didn't want to overwhelm her with unwanted oral stimulation that would cause her further aversion. It was at first discouraging because we couldn't even tell if the surgery had been successful, we weren't sure how long it would take to know, and we didn't know when it would be safe to give her food by mouth. 

If Hannah didn't have a chance to get hungry or have room in her tummy to get full, she would never be interested in feeding orally.  So after the surgery, my focus was to aggressively increase Hannah's feeding volume and decrease the feeding time so that she could learn appropriate hunger cues. (See my last post about all the math!)  In order to have a true bolus feed, she would need 100 mL in only 30 minutes every three hours.  I would have to eventually set the feeding pump to 200 mL/hr.  One hundred mL is only a little more than 3 ounces, but this goal seemed daunting!  How could her little tummy, getting just 34 mL an hour, ever handle so much at once? I had no idea how quickly she could progress and how much her little tummy could handle. I worried that I might push her too much too quickly, and whether it would make her throw up and potentially aspirate.

Two days post up I increased her hourly volume from 34 to 40 mL. Then a few days later to 45 mL. Then 55.  Then 69. And each step of the way she seemed to be doing really well! I decided to carefully offer her a bottle after each off-period when her tummy had a chance to be empty.

She had a check-up that Friday, 7 days post-op, and her incision looked really good; no redness or swelling at the surgical site and no fever.  She weighed in at 12 lb 6 oz and was now in the 15th percentile for weight rather than the 5th percentile from a month before.  Yay for growing!  Hannah was given some eye drops for her crusty eyes and got her 4 month shots. She's progressing toward bolus-feeds, and she is growing. These are good things, and the current plan is working for now.  (The plan and forthcoming check-point is always changing!)

The first bottle. Such happy tears!

Imagine our surprise when on Sunday, 9 days post-op, she finally took a bottle and drank 30 mL!  No choking, no coughing, and certainly no turning blue. What a miracle!  She was very hesitant at first and her body was very rigid, and she was very sloppy as she tried this new thing. I could tell she was hesitant but hungry. She definitely did not want to recline in my arms, preferring instead to be held in am almost upright sitting position.

I will take credit for being vigilant and perseverent about Hannah's care. I will take credit for pumping 4-5 times a day for 4 months. (That has certainly been a labor of love!)  But I can't take credit for Hannah taking a bottle all of a sudden on day 9 and swallowing perfectly.  This is our most incredible Tender Mercy by the grace of God!  I give credit to the medical skill of our surgeon and to the healing power of God.  Plus, Hannah is pretty much a rockstar.

So happy!

Oh the shouts of joy and celebrating at our house!  I laughed and cried happy tears of joy and thanked God.  The kids were shouting and cheering in amazement.  And I'm still laughing and crying and offering up prayers of thanks every time I hear the beautiful sound of my baby swallowing! 

On Sunday, she drank about 30 mL from a bottle.  Of course, this was just a start. We knew that before we could kiss the tube goodbye, Hannah would need to be able to take all of her food by mouth, 100 mL at a  time, 7 times per day.  Now we have a new plan: Every three hours give Hannah as much as she will take by mouth and give the rest by tube.  We would do this until she could take a full 100ml at once, 7 times a day. 

Each day after that she took more at a time than the day before! Sunday she took up to 40 mL at a time. Monday she took 50.  Tuesday she took 75.  And each time I was blown away with her progress!   On Tuesday I went to get her out of the car and was surprised and disappointed to see that she had pulled her tube out (she had been pulling it out accidentally with increasing frequency-probably two or three times per week).  At that moment getting her out of the car I had a "forward glimpse" kind of moment and thought to myself "some day her tube will come out for the last time.  I wonder what that will be like" and teared up with a lump in my throat (which I do often). I had no idea that this might be it!

I was planning to put her tube back in when I got home, but she was doing so well with bottle feeding that I thought she could go the rest of the evening and I'd put it back in before bed to make up for her remaining calories while she slept. And then I thought, "What if I didn't?"  I decided to let her go overnight and see if she woke up hungry, but she slept through the night. 

New feeding protocol
from therapist on Wednesday

Wednesday we saw Kristin again and she was just as blown away by Hannah's progress as we were! We got a new protocol to follow regarding Hannah's feeding, which is amazing considering how limited we were just a week before.  I always show up with a list of questions and soak in as much information as I possibly can.  While I have learned a lot about this cross-section of medical terminology and care, and I do have very good judgement, I was still uncertain what the best method was to get her adequate calories and whether she would need the tube overnight and for her medications. Wednesday and Thursday Hannah still had only oral feeds and was able to take in 80 mL at a time.  We were getting really close to our goal of 100 mL!

She has had a calorie deficit since the tube came out on Tuesday, but I was confident that she was going to get to the 100mL goal, seeing as she was taking in more orally each day.  The question was whether having a calorie deficit would cause her weight to plateau or even decrease.  At her checkup yesterday, 2 weeks post-op, she weighed in at 12 lbs 15 oz, meaning she had gained 9 ounces in just a week, while having oral feeds instead of just tube feeds!  Oh happy day!  The doc said he couldn't tell who was smiling more, Hannah or me.

I got her a mobile and she loves it!

Now we have the all clear to keep feeding her orally, and to even nurse as much as Hannah wants!  (She did latch on for 2-3 minutes a couple times, but for the most part, she doesn't really want to nurse yet.)  Plus, since she is catching up on her weight, she doesn't need as many calories as before.  Instead of 114 calories per kg of weight, my new formula is 80-100 calories per kg, meaning she only needs 530-660 mL per day instead of 710, and she's practically there!  Dr. Johnson also told me to let her regulate her feeding, so I don't have to wake her up in the middle of the night.


This is what real babies do! They eat until they are full and their tummy gets bigger and they don't have a tube taped to their face!  Oh the freedom of not having a tube! Hannah is so happy and playful!  She can lay on her tummy or fuss without me worrying about her tube coming out.  And she even rolled over! She can wake up and cry for food like a normal 4 month old.  This is a whole new world, and we are so excited!

She even takes a bottle from big sister!

Hannah's amazing healing and seamless transition to bottle feeding is a miracle!  It is truly  a Tender Mercy to me that she is taking all of her food by mouth less than two weeks after surgery.  Look at where we were at one, two, three, and four months ago, and how much progress Hannah has made (and mom too!)  Not only is Hannah a whole new person, she is whole.

Math

I remember kids in school complaining about learning math and saying that they would never need to use it as an adult.  FALSE.  I use math all the time.  Every day.

I remember teachers saying, "You're not going to be carrying a calculator with you every where you go."  Also FALSE.  

I was hopeful that Hannah would be able to ditch the feeding tube as soon as she got her surgery, but this is not so.  There I go again, getting my hopes up!  I can listen at her throat with a stethoscope and hear her swallowing, and it sounds kind of normal.  However, being NPO (no food by mouth) for almost 4 months, essentially her whole life, she doesn't want to suck on a bottle and has pretty much lost this skill.  She can't remember how.  Additionally, if I shove a bottle in her mouth, or even a syringe with milk in it, she will arch her back and cry and turn away.  This shows that she is averse to oral feeding at the moment.  So far, all we are able to do to introduce food by mouth is to dip her favorite pacifier in milk and let her lick or suck it off.  We will be seeing a feeding therapist on a weekly basis for the foreseeable future, and I have a feeling the next month will be very frustrating.

So while I'm teaching my 12 year old daughter how to navigate the social tumult of sixth grade, my 10 year old how to master his times tables, my 6 year old how to read complicated words and use table manners, and my 2 year old how to poop in the toilet, I am concurrently teaching my 4 month old infant HOW to suck and swallow.  This was not in the job description, and there really isn't a user manual.  Buzzfeed, Babycenter, and What to Expect do not have bullet lists on this.

Not only does she not know how to suck or swallow, but she doesn't get hungry.  In order to get her to want a bottle, or any food by mouth, she has to learn to recognize natural hunger cues.  This can't be done with a 20 hour continuous feed.  This means moving away from the continuous feed on her NG tube and starting bolus feeds. 

So what does this have to do with Math?  Everything!  As long as the NG tube delivers all of her food rather than her body telling her and her telling us when she is hungry, I have to determine how many calories she needs per day and convert it to mL per hour on her feeding pump.  Then I have to use my crazy math skills to get her that amount of calories in a progressively shorter time span each day so that eventually she can have 7 feedings per day, each lasting 30 minutes.

Here's how the story problem looks:

• Hannah weighs 12 pounds.  In order to gain the recommended 18-30 grams per day, she needs 114 calories per kilogram of weight.  Each ounce of fortified breast milk contains 26 calories.  How many milliliters per day should she get?
• How many milliliters per hour should she get if her feeding pump is on for 2 1/2 hours and off for 1/2 hour throughout the day (7 feedings), with a 3 hour break overnight?
• Every fourth day, her feeding is condensed by 15 minutes.  How many milliliters per hour does she receive at each adjustment?  How many days will it take to get to 30 minute feedings seven times per day, and how many milliliters per hour will Jenny need to set the pump to?  Assume that Hannah's weight increases by an average of 20 grams per day, and the total calories per day is recalculated accordingly with each adjustment.
• Extra credit: Using the formula of 1 tsp powdered formula per 45 mL of breast milk, with 1 tsp weighing 2.5 grams, how many 12 oz containers of formula does Jenny need to buy for Hannah in order for her to gain 2 pounds according to the above feeding schedule?  How much does that cost at $17 per container?
• If Jenny has 13 watermelons and Chris has 87 pencils, when will they be checked into the looney bin?

You don't really have to do the math, because I already have.  But what the heck, if you really want to and you get it right, I'll make you some cookie dough.  Given how hard it has been for Hannah to go up even 2 mL at a time in the past, this rate of increase might be too much for her or too fast.  Who knows? Maybe I'll have to adjust it by ten minute intervals instead of 15.  We started at 17 mL/hour back in December, so we've come a long way, but we sure have a long way to go!

Community

Waiting for surgery. Chris and I made up a song about
the "Koala Rockets" on her itty bitty hospital gown.

I'm becoming an expert on being in the hospital, sleeping on a stiff foam couch, and listening to beeps all night long.  Sunday afternoon Hannah came home from the hospital after her surgery, and if you are counting, this is her fifth time coming home from the hospital.

We arrived to check in around 3:30 on Friday afternoon and waited in pre-op until almost 6:30 when she finally went into surgery.  It only took about 2 hours.  When I was reunited with her after the PACU (post-anesthesia care unit) around 9pm, she was alert but rather unimpressed with the situation, refusing to give me any smiles or even make eye contact.  Then the nurses bugged her as they got her situated for the night, messing with her IV port, putting on her mini hospital gown, taking her vitals, and administering meds.  Once I was able to swaddle and hold her, she finally felt safe and comfortable enough to sleep.  By Saturday morning she was much happier and smiling again.  She got a little grumpy when her tylenol would wear off.  She loved having a mobile on her crib to look at, and she was wiggly and (mostly) back to her normal happy self by Sunday.  Her surgery went as planned and her wound is healing just fine. Yay for no fever!  Yay for a healthy surgery site!

A little shell shocked after surgery

I was very excited and relieved that Hannah could finally get the myotomy.  I was hopeful that maybe the end to these feeding issues would be in sight and we might find some kind of normal soon.  But I also spent the last week and a half worrying. Worrying that she would get sick before surgery day.  Worrying that I had the right surgeon.  Worrying that he was using the right surgical technique.  Worrying that I had chosen the right hospital.  Worrying that the surgery wouldn't work or would have complications. 

Utah Valley Hospital is 2 miles from our home.  Hannah and I had 2 stints there, and with just one pediatric ward, we got to know the nurses, technicians, and physicians very well.  There are half a dozen attending physicians that alternate shifts, and I was always present for daily rounds and could ask as many questions as I liked.  I felt like they knew me.  Nursing mothers can order a meal tray three times a day, and it is included in the room rate.  The nurses are always asking what they can do for the parent, and they bring drinks, snacks, fill your water bottle, set up the pull-out bed, and help you feel very comfortable.  We went to an outpatient clinic there in January, and the nurses remembered us by name and were happy to hear of Hannah's progress.  Each patient room has a private bathroom and shower for the parent, and I was able to wheel a hospital breast pump into the room with me so that I literally didn't ever have to leave.  As our first hospital crisis experience, it was somewhat of a defining experience for me.  It became a familiar place with friendly, recognizable faces, and was very comfortable.  So part of me was a little disappointed not to go back there for Hannah's surgery.

Safe and sound in mommy's arms

Primary Children's Hospital in Salt Lake City bears the motto "The Child First and Always" and I have learned that this is most certainly true.  They have taken excellent care of Hannah twice now.  PCH only takes children and has considerably more beds than Utah Valley, and therefore has many medical wards. It would be unlikely for Hannah and me to be in the same unit as we were in January, or to encounter any of the same nurses or physicians.  I knew that we wouldn't be familiar faces to anyone.  Most of the time, I never met the attending physician on staff. At Primary Children's the parents largely have to fend for themselves.  The nurses ask if there is anything they can do for you, but they really can't do much besides direct you to the cafeteria.  I didn't receive a single meal tray unless I was willing to pay for it myself.  The nurses never brought me food or drinks.  One time I was determined to find something the nurse could actually do for me in response to the question "Can I get you anything?" and I asked for earplugs, which she did track down for me.

Koala Rockets

Hannah's hospital room had a couch and a bathroom for me to use, but not a shower. (Ugh! First world problems!)  Because of the size of PCH, everything is streamlined.  Rather than having a hospital breast pump in our room, I went down the hall to the pumping room, where mothers can go to use the supplied pumps and then sterilize their own equipment.  Then I took the milk downstairs to the milk bank for the hospital to scan and store and prepare my child's feedings. The milk bank refrigerates or freezes the milk and fortifies it with formula if needed, and then sends the prepared milk back up to the unit in the correct administration (in our case, in a syringe for the enteral feeding pump).  Whenever Hannah's feeding pump was almost empty, the nurses were already warming up the next syringe.

Medically, both hospitals have taken excellent care of my little girl.  I know that Hannah would receive the best medical care in the world at either hospital, but that my experience would be very different.  But this hospitalization is not about my comfort or my familiarity with the nurses and doctors. This is not about me, it is about Hannah.  I made a conscious decision to go to the Children's Hospital where the most specialists are and where they are the most equipped to handle a complication.  I made a conscious decision to seek out the most experienced pediatric ENT surgeon within driving distance. And with that decision, I also had to consciously remind myself that as an expert in his field, he would use whichever surgical techniques he is the most experienced with, regardless of how big of a scar my child might have or how cutting edge another method might be.

She loved having a mobile to look at.

We had some excellent nurses that took very good care of Hannah and were lovely to talk to. We were fortunate to have Katie both nights and Johna both days which was some much appreciated continuity. While I was a little sad to lose the familiarity of Utah Valley Hospital and the friends I've made there, I came to know and love the unique sense of community that Primary Children's has.  For example, the auditorium on the 3rd floor has movie nights on Fridays for the kids, and church services on Sunday mornings (which I have now attended in blue jeans twice). Volunteers from nearby congregations come and prepare sacrament and provide musical numbers and inspiring sermons.  I often heard music coming up from the lobby from a piano or guitar or violin.  There is a school zone room and a play garden that we did not utilize, but I imagine provide wonderful opportunities for learning, exploration, play, and relief.

And the Ronald McDonald Family Room.  What an incredible place!  This room is a little haven on the third floor.  This place has bathrooms and showers and free laundry facilities.  There are computers.  There are books and games, a TV, a fireplace, and soft seating.  You can take a nap in a private bedroom, or even stay overnight with a case worker's approval.  The family room has a fully stocked, state of the art kitchen and a dining room.  If I wanted to, I could have made french toast for the entire 3rd floor using the food stocked in the fridge.  There are chimichangas and burritos and ice cream in the freezer. Eggs and milk and bread and cheese in the fridge.  The pantry has mac and cheese, canned tuna, oatmeal packets, fresh fruit, cocoa, coffee, cereal, spices, you name it.

Kaysville Church of Christ
provided dinner on St. Patrick's Day.

And my favorite part is the volunteers.  The whole place is run by volunteers, and there is a giant chalkboard on the wall that says who is providing a group meal each day of the month. It's companies, church groups, scout troops, clubs, and individual families.  I was at Primary Children's Hospital on New Year's Eve and New Year's Day.  I was there last weekend.  It could have been pretty lonely.  I was so glad that I could go down to the Ronald McDonald room and take a shower, then have a hot, delicious meal provided by happy, serving volunteers. I could meet other parents who were also experiencing a family medical crisis.  The line "What are you in for?" never felt so appropriate.  We all had in common our wearied bodies and worried minds, and could come together over our shared need for reprieve and food.  We could offer encouragement and understanding to perfect strangers that we might see again tomorrow or not at all.

The service rendered by these groups and families inspires me.  One family that served lunch on Sunday said that it was the three year anniversary of their daughter being life-flighted there for emergency medical treatment; the little girl over there twirling in the pink shirt.  Someday when Hannah's crisis is over, I want to bring my family and serve a meal there on a holiday for someone else who is having the first worst day of their life. I want to come sing a family musical number at the church service.  I want to alleviate someone else's loneliness when they are away from their family and their infant is in surgery.  I want to provide a momentary sense of normalcy for another family going through a medical crisis. If I had the opportunity to donate to a non-profit organization, this would be it.

Its been said that it takes a village to raise a child.  This place is part of our village.

Our hospital room.