Wednesday, June 13, 2012

Eve's Feeding Disorder- The First Four Months

It is very difficult to describe the frustration and desperation that parent of a child with a feeding disorder must endure.  It is a struggle John and I endure all day, every day, with no clear end in sight.  Every time there is a step forward it seems to be followed by two steps back.  Although I believe this struggle is one that no one can truly understand unless they have been through it themselves, I will do my best to explain what happened.

We came home from the hospital on January 1, 2011.  We knew something was wrong with her feeding from day one but we did not yet realize the extent of the problem.  Because finger-feeding was so difficult for Eve, we reluctantly decided to transition her to a bottle.  It still took us an hour to feed her 20ml's of breastmilk.  She was clearly trying extremely hard but just could not coordinate the process.  She would pull away from the bottle, arch, and scream, or, alternatively, act like she was sleeping and refuse to open her eyes or move.  She did anything she could to avoid eating.  I continued trying to breastfeed but I became increasingly frustrated and she became increasingly averse to my efforts.  We bought every bottle at babies r' us.  None of them made any difference.  We had no idea know what to do.  Neither did any of our friends or family.

It often took two people working together to feed her.  One person holding her, the other manipulating her arms and legs or supporting her chin to help her engage the bottle.
On January 3, 2001 we took her to her first pediatrician appointment.  It was not her normal pediatrician but since we were having so much trouble feeding we thought we should get her in right away.  She was still below her birth weight.  She was a small baby - 6 lbs 15 oz and she was 6 lbs 5.5 oz at this appointment 5 days later.  It usually takes about two weeks for babies to regain their birth weight so this was not yet terribly concerning.  I told the pediatrician about what we were going through and did not take our concerns seriously whatsoever.  He explained to me that many women have trouble breastfeeding and said that maybe, if our society was different, and I had been exposed to more women breastfeeding their children, then I would be able to do it.  Apparently, the reason I could not breastfeed was because I did not know what I was doing.  He encouraged us to go ahead and move on to formula.  It is shocking to me that he was so dismissive.

Every day was a struggle.  I refused to give up on breastfeeding and even if Eve couldn't breastfeed I wanted to give her breastmilk and so I continued pumping every 3 hours around the clock.  We still spent an our or more during each feeding session six to seven times a day. One feeding session with her would sometimes run into the next one.  If Eve was sleeping, she would rarely wake up on her own to eat.  We would wake her up and offer her a bottle every 3 hours on the dot.    If it had been 4 hours and she still had not eaten anything we would do whatever it took to wake her up.  We took to taking her clothes off, move her arms and legs around, put cold cloth her face.  I am not sure which was better, the screaming hysterically or the utter lethargy when we would try to wake her to eat.  We methodically wrote down how much she ate at every bottle and how long it took.  We weighed her every day.  John even made spreadsheets in excel.

We weighed her every day on our kitchen scale.
We saw a lactation consultant that first week who diagnosed Eve with an "ineffective suck."  She had no suggestions on what I could do to breastfeed and refferred us to an occupational therapist.  I could not get an appointment with the occupational therapist for TWO WEEKS.

We saw Eve's regular pediatrician for the first time on January 7.  At that point, Eve was eating between 2-3 ounces per feeding session and it still took us an hour or an hour and a half each time.  At that appointment Eve weighed 6 lbs 10 oz so she had gained about five ounces.  This doctor did not take our feeding challenges seriously either.  The pediatrician told us that Eve was not a turkey.  She actually said that, verbatim.  Her implication was that we were force-feeding our child by stuffing her like you would stuff a turkey.  Her recommendation was that we be less forceful with feeding and that we let Eve go four hours between feedings instead of three. 

John and were extremely reluctant to follow her advice.  At this point we KNEW something was wrong with our child.  We knew she should be eating more and that it was not supposed to be this hard.  We knew that if we were any less forceful or persistent Eve would not gain weight.  We were right, but I guess we had to prove it before her doctor would take us seriously.  We spent the next three days following the pediatricians advice.  At that point Eve was eating only 1-2 oz and taking 45 minutes on average each session.  If Eve went to sleep before finishing the bottle we would just let her sleep and wait until she woke up.

At Eve's follow-up appointment three days later, she had lost two ounces.  At that point Eve was two weeks old and still several ounces below her birth weight.  At that appointment, Eve's pediatrician also noticed an anatomical defect that none of the other doctors, and even she, had failed to notice previously (the defect had to be surgically corrected when Eve was 4 months old but that is another story altogether).  Finally, the pediatrician took us seriously.  The pediatrician sent us straight over to children's hospital for monitoring and testing.

Eve's first visit to Rady Childrens' hospital was on January 10, 2011.  We spent three days and nights there while they evaluated her feeding and ran numerous tests.  They did a KUB test (Kidney, Urieter, and Bladder), an echochardiogram (heart), a renal ultrasound, a pelvic ultrasound, lumbosacral x-rays, and an upper GI study.  Everyhing was normal.  The doctors could not tell us what was wrong with Eve.  The most helpful thing that came out of that hospitalization was the occupational therapist that taught us some useful feeding techniques.   We were sent home on January 13, 2011 with only a prescription for omeprazole for acid reflux.  That was their best guess at what was going on.  Three days later we went to the ER because Eve was refusing to eat.  After we had been there for an hour she took a bottle and so we went back home.

Eve's first visit to Rady Childrens' Hospital.
John working with one of the occupational therapists.

1/12/11.  Eve with her great-aunt Cindy at Rady's.  Aunt Cindy is an ER doctor at Rady's and was a big support for us during those first difficult months.
1/13/11.  Eve with her "Bomsie" (my mother-in-law) and the little girl that shared our room at the hospital.
That first month was so challenging.  I think I cried every day.  I was pumping all the time, trying to take time out of each day to breastfeed, and spending the rest of the day trying to feed her.  The lactation consultants encouraged me to have lots of "skin-to-skin" contact.  The doctors were telling us to give her "tummy time".  I was rushing her in and out of lactation consultants, occupational therapy visits, doctors office, hospital visits, etc, etc.  I really don't know how we did it.

For the next couple of months, with constant effort and with the help of outpatient occupational therapy, Eve was able to start gaining weight. Some weeks were better than others but it was always a struggle.  We tried everything we could think of - different bottles, different nipples, one lactation consultant even convinced us she was "tongue-tied" and so we clipped her frenulum - the small piece of tissue between the tongue and bottom of the mouth.  She still struggled, cried, pulled away from the bottle, and screamed hysterically during nearly every feeding.  And she consistently did not eat enough.

Eve's occupational therapist, Ann Mazzeo was simply a lifesaver for us  during those first few months.  She was the only person who had any clue how to help us with Eve's feeding problems.  We still see her nearly every week.

We tried so many different feeding positions.

Eventually, at the suggestion of Eve's occupational therapist, we wound up using a bottle that is typically  used for babies with cleft lip and palate who have no ability to suck.  It is made of a thin plastic that you can squeeze to get the milk to come out.  We would squeeze the milk into her mouth and she could then swallow it.  She never developed a consistent sucking pattern but being able to squeeze the milk into her mouth helped.

The times Eve came down with a cold were the worst.  Having a stuffy nose made an already difficult process nearly impossible for her.  During the more difficult periods we fed Eve with eye droppers, finger feeding devices, and even medicine syringes. I remember many feedings when we would feed her by filling up a 3-ml syringe and refilling it and reoffering it over and over.  We could speed up the process by doing it together.  One of us would fill up 2-3 syringes while the other held her and offered them to her.  We would use the sring put the milk in her mouth and massage her throat to encourage her to swallow.  Many times the milk would simply spill back out her mouth and down her throat.  We would then sop up the milk and weigh the towel to see how much milk she had lost so we could figure out how much she had actually swallowed.  The situation was absolutely ridiculous and impossible. But what other choice did we have?  We had to feed our child?  Giving up was simply not an option.

I stayed home with her nearly 24/7 during those first few months, between having to pump and spending an hour to feed her, sometimes with her screaming hysterically and arching and pulling away, I was utterly embarrassed to leave the house.  I remember one of the rare occasions when we decided to go out to dinner with our friends, Rich and Jodie.  After we ordered our food it was time to give Eve a bottle.  Eve's reflux was flaring up and so even though we could tell she was hungry, she would pull away from the bottle turn bright red and scream every time we would offer it to her.  Since Eve was crying so loudly I decided to take eve to the restroom.  Jodie went with me.

Once in the restroom I offered Eve the bottle over and over and over.  Every time I offered, Eve would pull away screaming bloody murder.   I would then have to spend time calming her down.  Once she was finally calm I would offer the bottle again.  After about 30 minutes of this I was at my wits end.  I told Jodie, with utter desperation, "She is so hungry!"  Then, a woman who had just entered the restroom happened to overhear what I said and turned to me and said "Why don't you just give her a bottle then?"

Give Eve a bottle.  Seriously?!?  What a brilliant suggestion -  to give a hungry child a bottle.  I wonder why I hadn't thought of that.  I was so flabbergasted I could not think of an intelligent retort.  I had a vision in my head of handing Eve to Jodie and punching the woman in the face.  It is the first time I, as an adult, have had an impulse to be physically violent towards someone.  Instead, I just ignored the woman.  But I raged inside.  Why couldn't that woman have kept her mouth shut?  That situation taught me a valuable lesson.  Keep your  opinions to yourself when it comes to other people's parenting.  Every child is different and every situation is different.  Give people the benefit of the doubt, especially if you don't know anything about them or their child.

Eventually we were able to get into a consultation with a gastroenterology specialist but her only suggestions was just that Eve had reflux.  They did two endoscopies.  On the first one she had high levels of something called eosinophil's and we were referred to the allergy clinic for a possible condition called eosinophilic esophagits.  I tried a lactose free diet but it didn't help.  After the second endoscopy was clear, her doctor ruled out that condition and said they thought she just had reflux.   I read about the condition online and got the doctors to agree to switch her to Nexium at a higher dose and it seemed to help some.

At some point in April Eve's feeding started rapidly deteriorating.  I remember rushing her to the pediatrician one day and completely breaking down in tears in the office.   Eve would only take 2-3 oz per session and would consistently get several ounces less each day than she needed to eat to grow enough.  We tried fortifying the breastmilk with formula to make it more calorie dense but the more we fortified, the less she would eat.  By the end of April she was only eating 15-20 oz per day, it took us all day to give her that, and it still was not enough.  John and I were increasingly desperate and did not know what we were going to do.  Despite all of our efforts, Eve was not gaining enough.  I felt that every bit of my energy went towards feeding her yet she was withering away in my arms.  

I would go to bed nearly every night feeling defeated and in tears.  Crazy thoughts went through my head.  I was trapped and did not know how to get out.  A couple of times when Eve refused to eat I threw the bottle across the room.  I even punched the refrigerator.  John and I started getting into arguments over details like when to feed her or how. The truth is that neither of us knew what to do and we were taking our frustration out on each other.  We started going to counselling, and it helped.

While we were going through all of this a friend of mine who has a child who is a few months younger than Eve made a post on Facebook about how her child was growing too quickly.  My friend jokingly indicated she was going to wrap her child up in saran wrap to keep him from growing.  Reading that post made me feel so defeated.  My friend had no idea how fortunate she was that her child was healthy and growing.  I think many parents make jokes like this but they do not realize how blessed they are that their children are growing.  If your child is growing, you should take so much joy in that.  The alternative is simply a nightmare.  

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