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.

Glossary of Terms

Here are all the new words I've learned in the past 3 1/2 months.  There might be a pop quiz later. 😉

She's such a happy girl!

Achalasia-failure of smooth muscle fibers to relax, which can cause a sphincter to remain closed and fail to open when needed. Most often associated with cardiospasm of the lower esophageal sphincter, but the term is not exclusive.

Atresia-absence or abnormal narrowing of an opening or passage in the body

Aspirate-condition in which food, liquid, saliva, or vomit is breathed into the airway (this is bad!)  Can cause aspiration pneumonia.

Bolus-the mass of food or liquid in a single swallow. Also refers to the administration of food or medicine in a single dose or preparation given all at once.  "Bolus feeding" means administering food all at once rather than continuously. We still haven't been able to get to bolus feeding with Hannah.

Botox-Not just for plastic surgery. It's an injection that paralyzes a muscle but is only temporary, lasting about 3 months. We tried Botox for Hannah at 8 days old and it didn’t work 🙁

Bronchoscopy- an endoscopic technique of visualizing the inside of the airways for diagnostic and therapeutic purposes

CP-abbreviation for cricopharyngeas, the sphincter muscle at the top of the esophagus

Dilation- to make something bigger. Think "dilate" pupils at the eye doctor, or dilating during labor

Lexie just loves her baby sister!

Dysphagia- symptom described by difficulty swallowing (not to be confused with dysphasia, which is a speech disorder)

Endoscope- flexible tube with a light used to examine the digestive tract

Endoscopic- procedure using natural body openings and an endoscope

Enteral- involving or passing through the intestine, either naturally via the mouth and esophagus, or through an artificial opening. Any kind of tube feeding is considered enteral feeding.

Esophagram- When the upper GI tract is coated with barium, the radiologist is able to view and assess the anatomy and function of the esophagus, stomach and duodenum through fluoroscopy

Esophagoscapy-Using an endoscope inserted down the throat to examine the esophagus.

Fistula-an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs. When Hannah was first hospitalized, we thought she might have had a TEF (tracheoesophageal fistula, or a connection between trachea and esophagus)

Fluoroscopy- imaging technique that uses X-rays to obtain real-time moving images of the interior of an object

Laparoscopic- procedure using a small incision and an endoscope

LES-Lower esophageal sphincter

GI- gastrointestinal

Hospitalist- a dedicated in-patient physician who works exclusively in a hospital.

Hypertrophy-increased size of muscle. You've probably heard the antonym "atrophy" when a muscle has lost its strength

Manometry- a test to assess motor function of the upper esophageal sphincter, esophageal body and lower esophageal sphincter (but probably not for babies)

MBS-Modified Barium Swallow- a radiologic examination using fluoroscopy in order to evaluate swallowing function in mouth, throat, and upper esophagus, usually just referred to as a swallow study.  The test may evaluate ability of the patient to swallow liquids in a variety of thicknesses.  A Barium Swallow, on the other hand, focuses on the propulsion of liquid through the esophagus and into the stomach.

Motility-ability to move food spontaneously and actively through the digestive tract

Myotomy-surgical procedure to cut a muscle

NG tube-a nasogastric feeding tube going through the nose to the stomach for enteral feeding. Naso- refers to nose and -gastric refers to stomach.

NICU-Newborn intensive care unit

NKDA-abbreviation for "no known drug allergies"

NPO- Abbreviation for latin term nils por os, meaning "nothing by mouth" Hannah has been NPO since she was 6 days old.

OT-Occupational therapist

Owlet- baby monitor that wraps around baby's foot to monitor oxygen and heart rate. Gives parents peace of mind but doctors hate it

Oximeter- Device using infrared light to evaluate pulse rate and oxygen rate. Pulse oximetry is a noninvasive method for monitoring a person's oxygen saturation.

Peristalsis-series of involuntary wave-like muscular contractions that push food down the esophagus

Secretions- mucus and saliva. Anything your nose and mouth produce on their own that has to be swallowed

She actually hates tummy time.

SLP-Speech language pathologist. In our case, also a feeding therapist. Our SLP is helping Hannah maintain her oral skills and will help us teach Hannah to eat by mouth after she has her surgery.

UES-Upper esophageal sphincter

Polyhydramnios-excess of amniotic fluid during pregnancy. In our case, caused by baby's inability to swallow in utero

Stricture- narrowing of the esophagus (or other bodily passage)

Zebra-Shorthand for the aphorism coined in the late 1940s by Dr. Theodore Woodward, professor at the University of Maryland School of Medicine, who instructed his medical interns: "When you hear hoofbeats, think of horses not zebras". It means an obscure and rare diagnosis, also called fascinoma.

30 Seconds From Tears

Getting ready for her swallow study.

Today I'm 30 seconds from tears when I remember that Dr. Smith is going to do Hannah's surgery this month!

Since Hannah was diagnosed, I have pretty much been 30 seconds from tears at any moment. Do something nice for me, and in 30 seconds I'll be crying.  Remind me how tired I am, I'll cry.  Ask me how I'm really doing, I'll cry. Remind me how lucky we are that she's alive, I'll cry. Think about how long she might be on a feeding tube, I'll cry.  Watch her choke on her spit, I'll cry. Ask me how scary it was to see my newborn turn blue, and you guessed it, I'll cry.

But today I'm crying happy tears!  I went into our swallow study very skeptical that anything had changed in Hannah's esophagus, and I was prepared with a laundry list of reasons to use to persuade the doctor to do the myotomy sooner rather than later.  He walked in to the exam room and looked at her swallow study and said, "It looks like the stricture in her esophagus isn't getting any better. I think we should go ahead and do the myotomy."  Happy Dance!  Happy Tears!  I am so relieved!  Now I feel bad that I was questioning his concern for Hannah.  He's definitely in our corner!

She's smiling because the doc says
she can have surgery!

Hannah's swallow study looked just like the first two: pooling above the upper sphincter, with barely anything getting through. She also had some silent aspiration, meaning she had some liquid go down her trachea and didn't even cough. This is obviously dangerous; if she had aspirated at home, we would not have known it.  There was no aspiration during her last swallow study on December 18, which leads me to think that perhaps her cricopharyngeus has become more constricting over time, as opposed to potentially relaxing over time as has happened in a few other cases.

Dr. Smith will do the surgery through an incision on her neck, and it should take about 2 hours.  He said he'd want her to stay overnight in the hospital for 2 nights just to make sure she doesn't have any post-op infection and to make sure she can eat.  Recovery is about 2 weeks and then we will have a follow-up swallow study.  I've read studies where babies with CA started breastfeeding in the recovery room following a myotomy (and reading that made me cry, of course). While that would be amazingly wonderful, it is very likely that Hannah has lost the oral skills to breastfeed.  I will let myself be pleasantly surprised if she can breastfeed right away, or even at all.

Lexie loves holding her baby sister.
She walks around saying "Hannah
so cute" several times per day.

The SLP who did her study indicated that she has a very disorganized suck.  With the exception of 2 swallow studies, Hannah has not taken any food by mouth since she was 2 weeks old, so it wouldn't surprise me if she forgot how.  She's also been on an almost continuous feed that whole time. This presents a few challenges.  Hannah gets 644 mL per day (22 oz), over the course of 20-22 hours.  Her tummy is so small that I'm not sure she can take more than an ounce at a time. Bolus feeding by bottle might not deliver enough calories, so the NG tube will be left in place to make up the difference as needed.  Another complication is that she has been on an almost continuous feed for so long that she doesn't know hunger.  Not only will she be relearning how to suck/swallow/breathe, but she'll also have to learn hungry vs full and that we're not trying to starve her.  It might be just like having a newborn again!

When I started writing this post, I didn't have a surgery date.  I was told it would be either March 16 or March 23.  I just got a call that she is scheduled for March 16. And then I started crying happy tears again. 

Have I mentioned I am So Happy!!!!

Family Fast

Hannah's prayer hands.

We invite our friends and family to join us in a special fast for Hannah this coming Sunday, March 4.  Hannah's surgery date is still undetermined, and we are asking for prayers on behalf of her doctors and surgeons to choose the best course of action for her optimal health and recovery.

Prayers for Hannah's body to be strong and resilient to ward off infections or surgical complications, and to be responsive to medications and treatments.

We are asking for prayers for our family. We've had the sickest winter we've ever experienced, and it's especially scary with a vulnerable baby in the house. Two kids have had croup, we've had coughs and fevers and throwing up. Kids have missed school, I've had to cancel appointments, and Chris has had to use sick leave to stay home when I wasn't able to.

11 lb 1 oz today!

Prayers for mom and dad. This has been an incredibly stressful time for us. So far we have managed to keep ourselves healthy, but it is exhausting to run a household of seven under normal circumstances, and we are often overwhelmed and discouraged. Whether we have stayed sane is yet to be seen.

Prayers for momma.  I'm really hoping for good news on Monday of a surgery date soon (maybe in the next couple weeks?), but I should be praying and hoping for the best possible outcome for Hannah even if it takes longer than that. Perhaps what I need is greater faith in the Lord's timeline.  And if the doctor's plan and the Lord's plan don't match my plan, I need some serious courage and strength to accept it.

We feel very blessed by all the medical interventions that have been available to sustain Hannah and that she has been able to stay healthy over the past few months.  She has not taken food by mouth since she was 6 days old, and she is now over 3 months old, and is finally over eleven pounds. What a miracle!  And somehow this sweet little girl manages to be happy and smiley despite all her challenges and always having a tube through her nose and into her stomach.

Sweet big sister

The first Sunday of each month in the Church of Jesus Christ of Latter-Day Saints (Mormon church) is called Fast Sunday.  Church members refrain from food and drink for 2 consecutive meals and donate what would have been spent on food to the poor and needy. The purpose of fasting is to show humility to the Lord, to pray and meditate and repent, to seek spiritual guidance, and ask for needed blessings. The pangs of physical hunger remind us of our continual need for spiritual nourishment.

I'm not actually physically able to fast right now since I'm nursing (or rather, pumping), but I am planning to dedicate my day to scripture study, prayer and meditation, and I'm going to refrain from my favorite guilty pleasures of Mtn dew and sweets and idle time-wasting on my phone.  It's not quite the same as a physical fast, but it will be a sacrifice for me in a way that I'm able to make.

We are using this Sunday to direct our prayers towards Hannah's recovery and all who are involved in her care, and we invite you to join us in any way you are comfortable, whether it be prayer, fasting, cosmic thoughts and good vibes, or anything else you can think of. Since I wrote my post a couple days ago feeling discouraged about the surgery being a moving target, I've been gaining confidence that I might actually be able to present my reasoning to the doctor without bawling my eyes out, and that it might actually work, and that if he doesn't agree to do the surgery sooner rather than later, I'm going to find a surgeon who will.  This is me advocating for my child.