Monday, March 3, 2014

Feeding Hazel Grace

The snow has fallen, the streets have been somewhat plowed, the children have been bundled, sled and snowballed, unbundled, hot-chocolated, fed, pajama-ed and finally kissed goodnight,

and I have shut the door to my room...

with me on the inside, and everyone else on the outside,

and I breathe a sigh of relief of a day well done.

These last few weeks have been a nonstop flow of days best described as survival of the fittest,

and I often fall into bed at the end of them wondering if I am truly the fittest.

Hazel's feeding issues have yet to be completely resolved, although we are much closer to a happier solution.  To make a long story shorter, when Hazel was in the NICU, she was being fed my breast milk mixed with Enfamil powder to increase the number of calories per ounce of milk since she was so small and her little tummy could only process but so much volume.  Then, she began to drink from a bottle.  She would be fed as much as she could through the bottle, and then what she could not eat by mouth, would go down the tube.

The next step was that I would nurse her before her bottle once a day while I was there.  Then, she would be offered the bottle and then the rest would go down the tube.

But when she got home, and she started to nurse more often, her body began to reject the powdered formula that we were mixing into my breast milk to put down her tube, and she began to have more reflux.  So, the powder was stopped, but that meant that the volume of her intake had to increase.

She had a good latch, though, and was nursing well, which was our goal, and so, when we went to the surgeon to check on her tube placement and healing, he recommended that we stop the tube feeds altogether during the day and just tube her at night and breast feed her during the day to encourage her to nurse and to increase her stamina.  Well, I didn't quite agree with that, because it seemed like a big jump to take away all tube feeds during the day, and a call to the pediatrician confirmed what I thought, and together we came up with a plan to nurse her every other feed during the day, and tube all the rest.

That was going ok, but when we went back to the pulmonologist, she said that Hazel was not gaining enough weight, so we needed to increase her feeds from 90cc's every 3 hours to 120cc's every 3 hours.  Around the and night.

Well, we can guess where that headed!  Hazel's reflux came back with a vengeance!  There was no way that her tiny self could tolerate all that volume increase so quickly!  But I was nervous because Hazel had not gained weight, and the doctor wanted to put her back on the formula mixture, and I knew that would be worse.  So, we slowed the feeds way down and did everything we could to get her to take that volume.  In addition to that, I suddenly had to produce 120cc's every three hours in addition to the little bits that she would nurse.  She wasn't really nursing well anymore because she never felt hungry because her tummy was always full, so I had to pump every 3 hours, around the clock.  I only skipped the 3AM pumping session, even though I still had to get up to hang her feed.  I felt like I was pumping and feeding Hazel constantly!  As soon as one feed was done, I had to pump and prep the next one!

Then, the week before this past week, Hazel's reflux hit so hard that she could not keep anything down.  She would vomit the entire feed either right after it was done running or within a half an hour.  But, since she was holding nothing down that went in by tube, she was hungry and started nursing more, and she would keep whatever she got down from those sessions.  Sometimes it was a few swallows, but sometimes she would nurse til she fell asleep (oh, the glory of that feeling!  I didn't realize how much I missed it til I had a little glimpse of it!).

We were due back at the pulmonologist and I was dreading the scale there, but there was just nothing to be done about it.  If Hazel couldn't keep her food down, how can the child gain weight?

Then, last Monday, a day before the pulm appointment, Hazel started vomiting blood.  It wasn't a lot, but it was enough to cause concern for both me and Hazel's nurse, so we went to the ER at Children's and on the way, I made a follow-up appointment with gastro for the following day, knowing they would tell me to follow up with them anyway.

We were told in the ER that the blood was 'merely' due to the irritation of her esophagus due to the acid in the reflux that she was constantly experiencing.  We were told not to worry but to keep an eye on it, come back if it got worse, and...follow up with her gastro doctor.

Since I had already made the appointment, we got in the very next day, and explained the situation.  We decided to adjust her feeds so that she gets a continuous feed of 400cc's overnight, from 10PM to 6AM and then from there, she would get only 100cc's at 10AM, 2PM, and 6PM, with nursing on demand between those times, with the liberty to change the rate or the dose as Hazel needs and we see fit as long as she is getting at least 620cc's per day.

You can not imagine the change this has made in both of our lives!   We have had to change the start time of the continuous feed from 10PM to 7PM because she was still having a hard time keeping the milk down even as slow as it was running, but other than that, she has done famously, and this means...(drumroll, please...)


Yes, folks, for the first time since Hazel Grace has come home in December, I do not have to pump every 3 hours.

This is such a HUGE relief!  I am producing pretty much the same volume, and I know that if I ever need more, I just need to pump more, but I am no longer tied to the pump every 3 hours!

In addition to that...Hazel is not connected to her feed tube 24/7!  That means that there are actually times during the day when we can even take off her extension and tickle her smooth tummy with just a little button off to the side!

Oh, the joy of it all!

I never thought that feeding such a small child could be so stressful!  I am constantly counting milliliters and calories and hours and rate and volume and I often doubt myself as to if what I am doing is right.

Am I slowing Hazel down and delaying her development by not giving her bottles?  Is my personal desire to nurse my baby detrimental to her overall well being?

I ask these questions repeatedly to both myself and her specialists and doctors, and I always get the same answer:

We don't know.  Probably not, because every baby is different, every day is new, and every experience is a brand new turning of a clean page.

So, the bottom line is, I feel in my heart that I want to hold my baby and nurse her as I did the others, and I see by her health that what we are doing is working for her, so all that is left is to trust.

To trust to One who put it all together to begin with:  Baby, Mother, Milk

Perfect food, perfect plan.

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