Thursday, June 28, 2012

Eve's Feeding Disorder - Life with A Feeding Tube

On April 29, 2011, Eve had surgery for the anatomical deformity I mentioned in my last post.  We also coordinated that appointment so that she could also have an  MRI and an eye exam (I will write about her eye issues later) at the same time.  We stayed overnight  went home the next day.

For the next three days Eve's feeding worsened and so, upon the recommendation of her occupational therapist, we finally relented and agreed that Eve needed a feeding tube.  We were admitted on May 3, 2011.  Upon arrival, the nurses placed a naso-gastric feeding tube ("ng-tube") into Eve's nose.  Thus, our journey with a feeding tube began. My thinking was that we could just use the feeding tube to give Eve those extra few ounces of milk each day that she refused to eat on her own.  For the first couple of days this actually worked.  In fact, on the second day she had the tube, we did not need to use it at all because she was able to drink enough on her own.

This is what Eve's N-G tube looked like.
I remember getting into heated arguments with the resident on Eve's case at the hospital about how her feeds should be administered.  The resident insisted we should give eve about ten ounces of milk on a continuous drip throughout the night.  I, however, had done my research and learned that night feeds and continuous feeds should be avoided, if possible, because the body does not normally eat that way.  Continuous feeds do not allow the stomach to expand enough that the child is able to eventually consume large quantities of food at any given time.   Ultimately, this can make it more difficult to wean a child from the tube. Also, I did not want to give Eve any more milk through the tube than was absolutely necessary.  I felt that this resident was setting Eve up to become tube dependent.    

After we went home we continued our regime of giving Eve at night only what she did not consume during the day.  However, over the course of the next month, despite my efforts at preventing it, she refused her daytime feeds more and more.  Despite our efforts to avoid it, it only took about three weeks for Eve to become entirely dependent on the tube.  It was shocking to me how quickly this occurred.  Looking back, it really makes a lot of sense that this happened.  Eating was so difficult for Eve.  She quickly learned that she did not need to do it as long as the tube was in place.

I hated that ng-tube.  It was sooo difficult to deal with.  Her face had a horrible reaction to the tape and was always red and irritated.  We never managed to keep the tube in her nose for more than a few days, as she could easily pull it out herself.  Placing the tube was an excruciating process for all three of us.  One of us had to restrain her while the other measured the tube and shoved it into her nose. She would, of course, scream hysterically the entire time.  I will never forget the time I placed the tube into her nose and instead of going into her esophagus, it came out of her throat.  I tried again and that time it came out of her other nostril.  Finally, on the third attempt it went into her esophagus.  I was constantly worried it would go into her lungs but we had been taught how to use a stethoscope to listen to the sound her stomach would make when a little bit of air was pushed into it.

Family Photo Shoot on 6/14/2011.  

If you look at her left cheek in both of these photos you can see the red marks left by the tape.
Since Eve's feeding was worsening rather than improving with the feeding tube, her GI doctor suggested pretty quickly that we transition to a gastronomy tube ("g-tube").  We thought there was a possibility that she might do better with feeding with a g-tube instead of the ng-tube.  Ng-tubes cause irritation of the throat and nasal passages, and they tend to exacerbate any existing problems with reflux.  Eve's g-tube was placed on June 15, 2011.  We stayed at the hospital for two nights to ensure it was working for her.

Not long after the g-tube was placed, Eve started throwing up her milk.  Sometimes just once a day, sometimes, several times a day.  We tried different formulas, different medications, different feeding schedules.  We had to make sure not to make more than one change at a time so we could figure out what helped and what didn't.  Since she was throwing up so frequently, the doctor advised against giving her large volume feeds overnight because there is a risk of aspiration if she were to throw up during her sleep.  So we wound up having to giver he continuous feeds during the night after all.  The regime that wound up working best for us was as follows:

  1. Nexium (for GERD) 2x a day exactly 15 minutes before each feeding.
  2. Azithromyacin (an antibiotic that helps with GI motility) in the morning but only when her stomach was completely empty, otherwise she would throw it up.
  3. Overnight continuous feeds.
  4. 4 daytime bolus feeds of 4 ounces over a period of 30 minutes while she is in her high chair, and keep her in her high chair for another 30 minutes.
It took us four or five months to figure all of this out but with this regime she threw up less frequently, maybe a couple of times a week instead of every day.  Some weeks were better than others.  If she had any type of head cold, her stomach simply would not tolerate fees and she would throw up more frequently.  It was so difficult to see her struggle with throwing up.  Eve is such a happy child normally but when she would throw up, she would be miserable, and all I could do is hold her and comfort her while it passed.  Of course, all of the reflux and throwing up made her even less willing to try liquids.  Not long after the g-tube was placed she  started refusing all liquids of any kind altogether.


When Eve was about six months old, we began introducing solid foods.  Although she was refusing all liquids, I hoped that she would do better with solids.


Feeding Therapy - 7/6/11
Feeding Therapy - 7/6/11



















Every time we would feed Eve during the day, we would offer her food by mouth.  The idea behind this is that, at minimum, she should associate being offered or tasting food with the feeling of her stomach being filled.  John and I are extremely consistent about offering her food any time we giver her feeds through the tube (if she is awake at least).  Unfortunately, more food winds up on her than in her.  Here are a few examples:

7/21/2011 - Avocado
7/21/2011 - Avocado















7/22/2011 - Banana
7/27/2011 - Carrot
video

She will typically open up for one or two bites but she never consumes very much volume of anything.  Earlier this year I thought we had a breakthrough with re-fried beans.  I remember she ate about a tablespoon of them and I was in tears because that was more than I had ever seen her eat before.  She showed interest in them for a few weeks but then lost it.  We continue offering and offering. Sometimes she shows some interest but most of the time the food winds up on her or on the floor.  Lately she has started spitting the food back on whomever is offering it to her.  She used to refuse by looking in the other direction and clamping her mouth shut.  Now she can sign "all-done" and will sign it repeatedly until you stop offering whatever it is you are offering.

I have a love-hate relationship with the feeding tube.  On the one hand, I hate that my child can't eat. I hate that she can't enjoy the wonderful sensory experience of food.  I hate that feeding her is a seemingly never-ending battle.  Food is an extremely important part of life in my family.  John loves to cook and, for us, it is food that brings people together.  Any time we have family over, we plan and cook delicious meals and consume them together.  It saddens me when I wonder whether if Eve will ever be able to be part of that.  On the other hand, I have a huge sense of relief that she is able to get the nourishment she needs to grow.  It wasn't until after we got the feeding tube that Eve really started developing her gross motor skills.  It enabled her to focus her attention on things other than eating.

Coping with a child with a feeding disorder has been extremely difficult for me.  It is a constant struggle and a constant worry every day.   I don't know when or how we are ever going to get her to eat normally.  I don't know if she will be able to enjoy food together with us as a family.  The problem is, the more anxious and nervous, and forceful I am towards making her eat, the less inclined she is to want to eat.  It is a vicious cycle.  Often feeding disorders start as a physical problem and develop into a psychological disorder that affects the entire family and the entire feeding process.  Feeding is no longer something the child can enjoy, it is something that they are constantly forced into.  I am still working on just letting it go.  There is only so much I can do.  The more I try to make it happen for her, the more she will feel imposed upon and forced into it and it becomes a battle.   I have to let it go. . .

Over a period of about six months we were able to increase the volume of Eve's feeds to five ounces and reduce the amount of feeds we give her during the day from four to three.  We are working on increasing her tolerance for higher volumes of formula.  Right now, Eve rarely ever throws up - so that is one minor success story.  When she finally stopped throwing up we were able to start giving her large volumes over a short period at night rather than continuous feeds.  She is consistently growing along a healthy and proportional height-weight curve.  As far as what she takes by mouth, I cannot get her to drink more than a couple of sips of any liquid.  On a good day she will eat about 5 goldfish or cheerios and maybe a few spoonfuls of a soup or puree.  Where we are at now took so many months of constant daily struggle.  These accomplishments may seem small because we have such a long way to go but, for us, these are huge accomplishments.  


Eve still has little or no desire to eat or drink.  Most of what I offer her winds up on me, on her, or on the floor.  Her GI doctor says he will not try to wean her from the tube unless she shows more skill at being able to drink.  However, because she is on the tube, she refuses to drink and so cannot gain the skill.  I honestly do not know how to break this cycle.  It is possible I might snap at the next person who asks me when Eve will be able to stop using the tube.  Although it may seem a relatively innocuous question coming from someone who has no familiarity with Eve's issues, for me, that question triggers so many feelings of anxiety, and anger, and helplessness.  I do not know the answer, and I wish I did.

For a long time I struggled with tube-feeding Eve in public.  People, especially children, stare.  I am sure it is because it is something they have never seen before, but it does make me self-conscious.  It was really the first visible sign that something is wrong with Eve.  It makes us look different.  I remember asking another woman I know who had a child (who passed away in her early twenties) with a feeding tube how she dealt with this issue.  She told me she would never feed her child in public - she would take her child to the restroom to feed her.  That woman's comment was really a wake-up call for me.  Feeding someone in a restroom is simply repulsive.  Would you go to the restroom to eat a sandwich?  There is a risk that her food could become contaminated, and certainly the odors of a restroom are not consistent with encouraging a person to eat . .  .

After thinking about the only real alternatives to feeding Eve in public - not going out of the house or feeding her in places like restrooms, I slowly became more comfortable with doing it.  I also realized that, as Eve grows older, she is going to have to learn how to cope with people's questions and looks, and I am going to have to be a role model for her and teach her how to handle those situations.  If I am ashamed of how she eats, she will pick up on those feelings, which could have long lasting implications on  her self-esteem.  Instead, if people stare or ask questions, I explain the situation.  Interestingly, children seem more understanding and less judgmental than adults.

A few weeks ago I was at a friend's baby shower.  I was drinking a Diet Coke from a can and, miraculously, Eve actually showed some interest in drinking it.  Now, certainly Diet Coke is not an optimal drink for a seventeen month old child.  On the other hand, I try to capitalize on the situation any time Eve shows the slightest interest in drinking.  In my judgment in that moment, I thought a sip of Diet Coke would not hurt her, and it could be an opportunity for her to actually get some practice drinking liquids.  So I offered Eve a sip of my Diet Coke.  Most of it spilled onto her and onto the floor.  Afterwards, I caught a glimpse of an older woman who had witnessed what had just happened.  She had an expression of utter disgust and judgment against me over what I had just done.  At first, I was angry.  Who did she think she was?  After thinking about it some more, I realized that, before having Eve, I might have reacted the same way.  As I  realized this, my anger at her judgment subsided. I am now a better person than I was before I had Eve.  Having gone through these experiences, I am much less likely to judge a person, especially a parent, based some initial observation.

To end this post on a positive note, here are some photographs of a moment in time where Eve did enjoy food.  It does happen sometimes.  These photographs help remind me that there may in fact be a day when Eve can consume and enjoy food on her own.

Eve's First Thin Mint - 2/3/2012









Friday, June 15, 2012

A Letter To an Amazing Father

To my husband, John:

Thank you for holding my hand and being by my side during Eve's difficult labor and delivery.
Thank you for changing all of Eve's diapers and taking over those middle of the night feedings during those first difficult weeks when I was still recovering.
Thank you for planning, shopping for, and making our meals every day.
Thank you for working so hard to provide for us.
Thank you for being my shoulder to cry on as I mourn the loss of the child that I thought I would have.
Thank you for feeling so deeply the pain and loss due to Eve's disabilities yet loving her more because of them.
Thank you for learning a completely new language  - and constantly encouraging me to do so - in order that we can communicate with our daughter.
Thank you for engaging me in those endless arguments over how to best care for her.  Two minds are better than one.
Thank you for helping to make those difficult decisions - the feeding tube, the cochlear implant, etc.
Thank you for letting me know I am not always right.
Thank you for being strong when I am weak.
Thank you for taking her to so many of those endless doctor and therapy appointments.
Thank you for constantly working with her, loving her, and encouraging her.
Thank you for always believing in her.
Thank you for always believing in me.
Thank you for sharing in the joy of her accomplishments.
Thank you for allowing me to see how a loving father interacts with his daughter.  I never experienced that.
Thank you for going above and beyond when many fathers would have ran in the opposite direction.
Thank you for giving me and Eve your whole heart all day and every day.

You do not know how amazing you are.






Men like you, the ones that not only support, but nurture their families, are rare indeed.  I honestly do not know what we would do without you. 

Love,

Athena

P.S.

Here is a video of Eve on Fathers' day one year ago.  She has grown so much!

video



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.  

Saturday, June 2, 2012

Eve's Feeding Challenges Begin


The day Eve was born I was more physically and emotionally exhausted than I ever had been in my life.  After two and a half days of trying to give birth to her, very little sleep, and a surgery I had done everything within my power to avoid, the day Eve came into the world is quite a blur to me now as I look back.  After leaving the operating room, I remember waiting what felt like forever while the doctors ran tests and John watched over them.  When he finally brought her to me I tried to breastfeed her.  She did not latch on but that was okay, I had read that it can take some time and energy to establish breastfeeding.  I did what I could while the three of us spent some time together as a family.  Once we got set up in the recovery room I rested a bit and then tried breastfeeding again.  Eve really was trying desperately but could not figure out what to do.  I was not sure if she was getting any breast milk but I kept trying.

The next day, December 30th, Eve's weight was down from her initial birth weight.  I was pretty sure Eve was not getting any milk and we started to become concerned.  Towards the end of this day, Eve started pulling away when I would offer her the breast.  When Eve would finally latch on, she would move her mouth but I did not see or feel any milk or colostrum coming out.  That afternoon we talked to our nurse and she said she would ask the lactation consultant to come meet with us in the morning.  She also suggested I start using a breast pump so I could establish a milk supply.

The next morning, December 31,  the lactation consultant came and when we explained the situation.  The consultant gave me no breastfeeding suggestions whatsoever.  She just encouraged us to give Eve a bottle of formula.  I, however, was not so sure that was the right thing to do.  For one, I determined to breastfeed my child and I had read that you should not introduce a bottle until  breastfeeding is firmly established..  I had also read that colostrum, the milk produced during the first few days after a baby is born has important immune-boosting properties.

Since I was producing a little bit of colostrum from pumping, we decided to finger-feed her the colostrum I was pumping.  Finger-feeding is a technique that allows you to feed a baby without introducing an artificial nipple.  It is a tiny tube that you hold on one finger and at the end of the tube is a syringe with the milk or formula.  You use the finger on one hand to feed the baby and the other hand to push the milk into the tube and ultimately into the baby's mouth.  I was not producing much - maybe 5-10ml a per pump session.  It was awkward trying to hold the baby, the tube on one finger in the baby's mouth, and the syringe in the other hand, but I was slowly able to get her to drink a little.

I was so exhausted that evening from pumping, trying to breastfeed, and recover from Eve's delivery that John decided to take Eve out of the room.  The hospital Eve was born at has no nursery and babies are required to room-in with their mothers.  The problem was that with Eve's feeding challenges, I was not able to get very much sleep.  I NEEDED SLEEP so badly.  The other rule at the hospital is that if a baby is taken out of his or her room to the main area in the recovery ward, the baby has to be kept inside the bassinet.  So John was rolling Eve around in her bassinet for an hour or two but was not able to lift and hold her when she cried.  It was a ridiculous situation.  Finally, Eve started crying so desperately that our nurse let him go into a vacant recovery room so he could try to feed her.  The problem was, neither he or the nurse could get her to eat anything with the finger-feeding contraption.  Eventually they came back and woke me up so that I could feed her.  Fortunately, that hour or two of rest did wonders for my body and after I pumped I finally started producing a better volume of milk to feed her.  We were able to avoid giving her formula and start giving her better quantities of breastmilk.

The next morning, thankfully, Eve had gained weight.  She was still not up to her birthweight but it was clear that we were getting her the nourishment she needed.  We brought her home that night.



This was John's first attempt to clothe Eve.  He has improved significantly.  
It is hard to believe she was ever this small!  She is bright red because she HATED the car seat and screamed her head off the entire ride home.
Eve and Luna meet for the first time.
Luna still isn't sure about this new addition to our household.




A Mother's Love

It happened when Eve was two days old.  I had read about it and heard about it from every parent I knew.  I simply did not understand the magnitude of what I would feel until I had a child of my own.  I fell in love.  Unconditional love.  If I had been standing at that moment, I probably would have fallen down.  It was a precious moment after days of exhaustion and frustration.  I will never forget it. I was feeding her and this precious innocent new life looked into my eyes with adoration.  I looked back at her and I was completely and utterly hooked.



And I am pretty sure John was hooked too:




It is this love for her that forced us to have the patience and persistence she needed us to have during those first difficult months of her life.  I am not a spiritual or religious person but the love I felt for this child in that moment was beyond rational thought or explanation.  Maybe it is simply hormonal, a biological imperative to care for your child that is built into our genes.  Whatever caused it, be it a god or the evolutionary process, I know the meaning of unconditional love.  It is as though there is a piece of my inside that is now outside of me.  There is nothing I would not do and no hardship I would not bear for the sake of her health and happiness.

Having a child of my own has caused me to appreciate my mother and the love and care she gave to me.  Now I truly understand how she felt-and feels about me.  I have so much empathy for her loss of my brother at 7 weeks old due to SIDS and respect for her ability to keep going after such a devastating loss.

Becoming a mother has also left me baffled at my father, who abandoned me when I was about six years old.      How could someone do that to their own child?  How can he ever forgive himself for doing that?

Eve's Birth



I found out I was pregnant on the morning of March 28, 2010. I woke John up to show him this!  We were surprised I became pregnant after we had been trying less than a month.  We were so ecstatic.





My pregnancy was completely uncomplicated.  Here are the 20 week sonograms where we learned we were having a girl!




And here I am 7 months pregnant:



As far as the delivery itself, I am keeping in as many details as I can remember so it is fairly lengthy and full of gory details that not all of you may be comfortable with so read at your own risk  I read every book I could on the birth process and concluded that I wanted to have a natural nonmedicated childbirth, although I wanted to have it at a hospital just in case something went wrong.  I wrote up an extensively detailed birth plan, essentially instructing the hospital staff not to offer me anesthesia/analgesia and to obtain my informed consent before performing any medical procedures.  My obstetrician said it was the best birth plan she’d ever seen, she agreed to support my goal of a natural nonmedicated childbirth, and she signed it right away.  Well, as the saying goes, the best laid schemes of mice and men often go awry.

My December 17 due date came and went.  I held out hope that Eve would arrive before Christmas.  Christmas came and went.  Here I am on Christmas morning with my first baby.  My cat, Luna.  



We met with my obstetrician on the following Monday, December 27 - 10 days past my due date - and I was still barely dilated to a 1.  She insisted that I needed to go into the hospital that night to begin an induction.  She said she does not want her patients to go more than two weeks past their due date as studies have shown an increased risk of major complications, including stillbirth past two weeks.  She said that past two weeks the placenta begins to decay, which causes fetal distress.

Now, as I said, I had done my research.  Many of the materials I had read said that the two week deadline my doctor was giving me was an arbitrary deadline substantiated by sparse medical evidence and that many women go on to have completely healthy labor and deliveries past two weeks.  On the other hand, my mother says that she went four weeks past her due date with me and she wound up having a Cesarean with me.  Needless to say, I was torn.  Should I listen to my doctor and go ahead with the induction?  Should I trust my own instincts that my body was not ready for labor my own research that going past two weeks is really okay?  In the end we decided to go through with the induction.  I was too afraid of the guilt and shame I would feel if something went wrong because I failed to heed my doctor’s advice.  To this day I don’t know if this was the right decision or not.

We went in to the hospital, Sharp Mary Birch, on December 27th at around 7:00 p.m.  I had not eaten much of anything that evening because my doctor had warned me that once I went into labor I would probably throw it up.  I had not slept since that morning because my doctor had given me the impression that I would be able to sleep that night as they started me on the initial cervical ripening agent.  Not that I was sleeping well at  nearly 42 weeks pregnant anyway.

We were settled into the LDR (labor delivery and recovery) room and they started me on 25mg of a drug called misoprostol (Cytotec), inserted vaginally, at about 9:30 p.m.  Apparently, because my cervix was barely dilated and not effaced at all, I could not be started on oxytocin (Pitocin) right away because Pitocin only works if the cervix is ready.  I know Cytotec is a drug that is not approved by the FDA for induction of labor but I also know that it is commonly used today for inductions and the research I read indicated it is actually associated with a lower rate of cesarean section than other induction methods AND that it can trigger spontaneous labor in the majority of cases.  Needless to say, my hope at that point was that the Cytotec would be enough to get my labor going and that I would not need Pitocin and that I could still have the natural (mostly) unmedicated childbirth I wanted. 

I was told that hospital policy required me to not have any food or drink once the induction was started.  I was hooked up to a contraction monitor, a heart rate monitor, and an IV for fluids.  The nurse then noticed that my birth plan said I preferred a heparin or saline lock on my IV unless medical necessity indicated I needed to be hooked up to the drip.  The first nurse I was assigned noticed this and gave me a heparin lock.   Then came the changing of the guards and I was left with soldier nightmare nurse for the evening.

This nurse was very professional and seemed focused on policy and doing her duty and my comfort was her last concern.  Apparently she was not comfortable leaving me on a heparin lock and reconnected me to IV fluids – even though I was regularly drinking fluids.  Almost immediately the Cytotec started causing me to have 2-3 minute apart contractions very regularly.  The contractions at that point were mildly painful – comparable to bad period cramps or (for the men who don’t know what that feels like) a side stitch while running.  The contractions alone were enough to keep me from getting a wink of sleep that night.  To make things worse, the soldier nightmare nurse would have to come in and adjust my monitors EVERY TIME I MOVED.  So all night I was lying there hungry, uncomfortable, and tired but unable to sleep and having to decide whether to move and deal with the nurse coming in to mess with the monitors within a couple of minutes or if I should just stay in the same position and not have to deal with the nurse again.

At about 3:30 in the morning on Tuesday the nurse checked my cervix again and there was not any change so she gave me another 25 mg dose of Cytotec.  I guess the hospital policy normally is to give Cytotec every four hours but because my contractions were coming so quickly they waited six hours instead (one of the possible side effects of Cytotec is uterine overstimulation so they have to be careful to not give the drug to much or too often). 

At 8:00 a.m. Tuesday morning my obstetrician came to check on me.  As soon as I saw her I burst into tears because I was already miserable and my labor hadn’t even started.  I asked her if I could eat and if I really needed to be hooked up to the monitors and the IV.  She said I could eat and seemed surprised I had been hooked up to an IV and the monitors.  Unfortunately the nurse fought her on the monitors – she said it was hospital policy -  and so I had to stay hooked up to those but they let me go off of them long enough to take a shower.  My doctor also checked my cervix and said I had only dilated a fingers’ width but it was enough that she felt comfortable doing a membrane sweep, which was mildly painful.  Then I took my shower, had some breakfast and relaxed a little before they hooked me back up to the monitors and gave me two 25mg doses of Cytotec.

Tuesday morning and afternoon was not as terrible as the night before.  I had a very nice nurse who was not nearly as vigilant about adjusting the contraction and fetal monitors, I was on a heparin lock, and had more energy after being allowed to eat a breakfast and lunch.  I might even have dozed a few minutes between contractions.  At some point in the early afternoon I was moving around to get comfortable in bed and noticed a small pill in the bed beneath me.  It turns out one of the 25 mg tabs of Cytotec fell out after it was inserted!  I also started noticing when I went to the bathroom that some water was leaking.  It was such a small amount that I thought it was just urine or something that I hadn’t wiped correctly so I didn’t say anything to the nurses.

At 4:45 my obstetrician returned to check on me.  After about nineteen hours on Cytotec I was still not effaced and was only dilated about a 1 and a half but she was able to physically push the cervix open further to about 3 centimeters.  I mentioned to her at that point that I thought I might be leaking fluid and she looked at it and agreed it was amniotic fluid.  She said that since my amniotic sac was already ruptured she might as well break it fully and get the labor started.  She asked when I started leaking and I told her I thought it was about 3:30 that afternoon, although I probably noticed it earlier and I suspect it was triggered by the membrane sweep she did that morning.  I told her 3:30 because I knew from the reading I had done about childbirth that time would set me on a 24 hour deadline to deliver the baby.  Most doctors set this policy because there is a higher risk of infection if you wait longer than that.

Almost immediately my contractions went from mildly painful to intense and excruciating.  Still every 2-3 minutes apart.  I was determined not to get started on Pitocin if at all possible and my obstetrician agreed to see if my labor would progress on its own.  Because I was essentially no longer on any drugs the nurses said I could labor at that point with intermittent contraction and fetal monitors for twenty minutes out of every hour.  I began moving around the room, using the birthing ball and using the breathing exercises I read about and had practiced from the Bradley method book I had read.  Over the next several hours the contractions became more and more intense and seemed to be coming closer together.  Sometimes the were right on top of each other – just as one would end another one would start.  John was there by my side the entire time comforting me through it.

At around 8:30 p.m. I started wondering how much more I could take.  I had never experienced pain like that before and I can barely put it into words now.  I was sweaty and shaky and threw up the cookie I’d had that afternoon and a bunch of the cranberry juice I had been drinking to stay hydrated.  From about 8:30 to 9:30 the pain was so excruciating and the contractions were coming so frequently that I thought “this has to be transition”.  Everything I had read said that transition (the point where the cervix dilates the last few centimeters) is the most painful and intense but it only lasts a brief period (maybe 30 minutes to an hour).  I thought I had to be transitioning because I had read that during transition you think that you cannot take it anymore but if you get through it the pain lessens during the second (pushing) stage of labor AND an epidural at that point is pointless because by the time you get it and it kicks in you are past the worst of it.

I remember one contraction that came around 9:15 that felt like it literally lifted me off the bed and my entire body was wracked with pain.  I felt like I must look like the girl in the exorcist but John said I was doing such a good job breathing through the contractions that sometimes he couldn’t even tell I was having one.  By about 9:30 (almost exactly 24 hours after the induction started) I broke down and told John I didn’t think I could take it anymore.  He called the nurses into the room.

Now during the last five hours the nurses basically left John and I alone – which is what I wanted.  My birth plan said that once I was in active labor I wanted as few interruptions as possible and I appreciated that the nurses respected that.  Once John called them in, the nurses responded immediately.  Two of them came in and explained to me that my doctor had told them she would be there by about 10:00 and that they did not want to check my cervix before then because my water had been broken and I knew that it was because cervical checks after the sac is broken introduce bacteria that can cause infection. 

They kept asking me to rate my pain on a scale of 1 to 10.  I did not know how to respond to this as I told them that I would think that I was in more pain that I had ever imagined was possible and then it would get worse!  They insisted I give them a number and so I told them 9.  We discussed and I decided that I should try to wait until my doctor could check my cervix to see if I should ask for an epidural because if it turned out I was transitioning then I would know there was an end in sight.  In the meantime I agreed to take a dose of a narcotic called Fentanyl that helped “take the edge off” my contractions.  It helped only a little.

My doctor arrived a little before 10:00, checked my cervix and said I was still dilated to 3 cm.  I had never felt so defeated before in my life.  After five and a half hours of the worse pain I had ever thought imaginable I had essentially made no progress whatsoever.  However, my doctor said that my cervix had actually effaced to about 90% and she felt comfortable starting me on Pitocin.  As I was having EXCRUCIATING contractions every 2-3 minutes (some even quicker) and I knew that Pitocin makes contractions even more intense, I knew that I had to get an epidural. 

The epidural was in and I was hooked up to the Pitocin by about 10:30.  The epidural mostly worked except for a slight ache I was feeling in my lower back.  I was stubborn and did not want to hit the button for more pain relief and decided I could live with the ache.  I think I eventually managed to fall asleep for an hour or so.

At about 2:00 a.m. Wednesday morning I was awoken by two nurses with concerned looks on their faces.  They gave me an oxygen mask and started flipping me from side to side and looking at the contraction monitors.  They told me that Eve’s heart rate was decelerating with each contraction.  As they were fussing with me I kept telling myself that the last thing Eve needed was for me to panic and so I started using my meditation/breathing exercises to keep myself calm.  Eventually the nurses got me in a position they were comfortable with but they said they were going to have to take me off the pitocin.  I was lying there for some tie, maybe half an in terror – afraid that if I moved Eve’s heart rate would start to decel again.  Eventually my panic caught up to me because my entire body began shaking uncontrollably and I felt like I was freezing.  The nurses came in and piled blankets on top of me and eventually I calmed down and went back to sleep for a bit.

At 6:00 am my obstetrician returned and checked my cervix.  I had only dilated one more centimeter in the entire night- so I was 4 centimeters at that point.  My obstetrician sat next to me and explained to me that my cervix and the baby’s head were swollen from the repeated impact against each other and that it looked like the induction wasn’t working.  She told me that given the 24 hour deadline we were likely looking at having a cesarean that day.  I think she was ready to bring me to the OR right then and there but I asked her if we were in any immediate danger and she said no.  I said I only wanted a cesarean as a last resort and asked if I could get started on the Pitocin again.  She said I could do that and so they started me on the Pitocin for the second time.

Around 9:00 a.m. Wednesday morning one of the nurses came back in to check my cervix.  She said that the she wasn’t happy with the way Eve’s heart rate was responding to my contractions and said that I had still not dilated past 4 centimeters.  She left and came back and told me she called my doctor and my doctor said she was calling the induction a failure and was coming in to do the cesarean.  At that point things moved VERY quickly.  I hardly had time to think about it and consent – I signed the form before even talking to my doctor and when the doctor came in she briefly talked to me about it before I was rushed off to the OR.  I remember that as they were wheeling me down the hallway to the ER I had tears streaming from my face because I’d had my heart set on a vaginal delivery.

Eve was born at 10:28 a.m.  The NICU team examined her and they cleaned her up before handing her to John.  I remember that during this time the anesthesiologist was trying to say something to me but I was to intent on following where Eve was and what was going on with her to listen and understand anything he had to say.  I couldn’t believe he was trying to talk to me and get me to understand something important only seconds after my baby was pulled out of me and before the NICU team had given her the OK.

Anyway, John brought her over to me and I got to put my arms around her and give her a kiss before they took her away again.  John left with her while they ran some initial tests and gave her the eye ointment, etc.  While my doctor was sewing me up she asked me if I wanted to know what she discovered once she got in there and of course I told her yes.  Apparently Eve was sunny-side up (meaning head down but facing my front instead of my back) AND the cord was wrapped around her tightly twice around her neck and once around her torso.  This baby was not going to come out vaginally as much as I had wanted that.  This also explained why my contractions were so excruciating because apparently when the baby is sunny-side up the mother has what is called “back labor”.  It also explains why I still had back pain after the epidural was in.  I didn’t realize it at the time because this was my first baby and I didn’t know what contractions were supposed to feel like.

Here are our first family photos:




Although my birth experience was exactly opposite from what I had hoped for, I am still glad I familiarized myself with the birth process because at least I knew what was being done to me.  At the end of the day I was just happy to have a beautiful little girl.  I would do it all over again in a heartbeat just to have her.



Athena

Welcome


Welcome to my blog all about my daughter Eve.  My name is Athena and I live in San Diego with my husband John and my daughter, Eve.  I am an attorney (currently working part-time) practicing civil litigation and John is a programmer for a local computer/video game company.  John and I met online in approximately November 2001 while playing a game called Everquest.  I moved to San Diego in 2003.  We were married in 2007 and our beautiful Eve joined us on December 29, 2010.

Here are some wedding photographs:















These photographs were taken when Eve was 6 months old.
    


I decided to write this blog for several reasons.  First, to keep my friends and family up to date about the most current news regarding her progress concerning her various medical issues and her growth and development and as a place where they can view pictures and videos of her.  Second, it is my way of attempting to process my thoughts and emotions about becoming a new parent, coping with her medical issues, including deafness, cochlear implants, feeding tubes, motor delays, and progressive vision loss.  This blog is also my effort to reach out to other parents who may have encountered the same or similar issues with their children.

For a brief summary of our journey since Eve was born, you can read this article written by my mother.  I am going to write about these issues in more detail in this blog.
http://identitymagazine.net/2012/05/10/a-mothers-day-story/

Athena