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.