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Nitara was born on January 27, 2004 after 12 weeks of bedrest starting at 23 weeks gestation. She appeared to be healthy, but just never ate very much at one feeding. I was feeding her every time she fussed, thinking she was hungry. After 1-2 oz she would lose interest. I did this kind of feeding day and night with the hope that she just had a small stomach and would soon grow and eat more. She grew slowly, but did not eat much more than 2.5 oz per feeding (up to 4 oz on rare occasions) even at 3 mos old.

For whatever reason, she was either born without strong hunger feelings, or she developed them because of infant reflux. She lacks the capacity in her stomach to hold much at a time. I am writing this intro 4 months before her third birthday and we are still not quite sure what are causing these issues, or what her long term prognosis is. In the early days we had no idea at all and it was a stressful guessing game as we watched our baby go downhill. I went to the pediatrician at least once a week after she turned a month old and was told over and over it was colic. Even when I told them how little she ate and how much she cried. She had other signs of reflux that I mentioned: spit up long after a feeding (sometimes with spots of blood), a diaper rash that would not go away, gurgly sounding voice, coughing, stuffed-up nose all the time. All signs of silent reflux. She didn't start vomiting until later.

-------------------------------

Date: Sat Mar 13, 2004 1:45 pm
Subject: March 13    

I've been in denial about Nitara's milk allergy but as last week she
started to get very fussy at each feeding. Grunted, cried, curled up,
then arched her back and pulled away from the nipple. Spit up, passed
gas. It was getting to be a huge ordeal feeding her. But she was
absolutely fine with soy formula.

*This early in the game we had no idea what was wrong with her. We now know she's not allergic to milk but she is somewhat lactose intolerant. She is also allergic to corn, which is in all commercial baby formulas, even the hypoallergenic ones.

-------------------------------------

Date: Wed Apr 28, 2004 9:46 pm
Subject: April 26- 27-28    

Too lazy to retype for my journal, so here's two posts made this
morning. It was, needless to say, a rough weekend. I can see first-
hand how so many babies get abused. I'm just glad I have the
presence of mind to put her down and walk away when I need to catch
my breath. And so glad that Vignesh is an involved parent so we can
switch off holding her. I think there's something about a woman's
hormones that make them desperate to quiet a screaming baby. Vignesh
can sleep through it, or he will just hold her and turn the TV up
louder to mask her screams. Sometimes he tells me to sleep and he'll
take her to the other room. But I cannot sleep at all until I know
she's quiet and happy. I just can't. And that desperation to quiet
the screams is, I think, what drives otherwise good mothers to abuse
their babies. The only way I could collect myself sometimes was to
put her in the bouncer, shut the door, and walk to the other end of
the house so I couldn't hear her.

Anyway here's my posts:

I don't even know for sure if my baby has reflux but the ped said she
probably did after I described her symptoms. I have no clue but I
tell you what, I don't even want to try feeding her anymore. I am
about to lose it.

My baby's almost 3 mos. old. Since about a week old she's been a
diffucult feeder. We've been using Dr. Brown's since day one since my
oldest had projectile reflux and they worked for her. She will take
about 1.5-2 oz and then start screaming, arching her back, and just
refuse the rest. She sucks on her hands and indicates that she's
still hungry. When offered the nipple again she will suck for about 3
sucks like she really wants it, then spit it out and scream again.

It's getting to the point where when I cradle her in my arm for a
feeding she'll automatically start to scream and arch even before I
have a chance to offer her the bottle. She's acting hungry but won't eat.
Finally after about 10 min. of horrific screaming she'll tire out and
eat 2 oz. Then more fighting and screaming. The only way she will
sometimes eat now is if I prop her on a pillow or in the bouncer. She
will start screaming if I try to hold her and feed her. She does this
every 3 hours.

I CAN'T DO THIS ANYMORE!!! I have a 3yo to take care of as well and
it's affecting all of us. I don't believe in CIO but sometimes with
her it's all I can do for my own sanity. Put her in her bouncer or
crib, shut the door and walk away. Then I feel like !@#$ because it's
my baby and she's in misery and I should hold her. Right now she's
screaming in her bouncer in the other room after me spending 20 min.
trying to calm her down after a 1/2 finished feeding where I had to
bend myself over to feed her propped on a pillow. My back and arm
ache. This is so wrong but I have no support, I have PPD, and I just
need a break. She is miserable in my arms and miserable in the bouncer.

She was on breastmilk for 7 weeks (I pumped). After many breast
infections, PPD, and the fact that she is so miserable on my milk,
I quit pumping and put her on GS because my oldest did
well on it. She vomited it up immediately, as well as 2 other dairy
formulas I tried. I tried soy and she kept it down but got
constipated to the point where she's pooping out rocks after 3 days
of straining. THe ped said use suppositories and Karo but neither has
helped. She said to use Nutramigen. I tried it and Mylanta at the
same time and she got loose stools so I thought problem solved. But
ped said not to use Mylanta because it can cause brittle bones, so
put her on Zantac. She got constipated again. Quit the Zantac and
she's *still* constipated just on plain formula.

I am tired of being told by the peds to try this and that, and that
it's just colic. NOTHINGS WORKING and I'm really at my wit's end. I
didn't want my dh to go to work today because I don't want to be
stuck taking care of the screaming baby all day. She could care less
if I am holding her or not. She's only eaten 18 oz. in the last 24
hours. She usually takes 12-15 oz. How can a baby grow on that amt?

I have another appt. today so I can throw away another copay and get
more guesses and more useless suggestions, spend more $$ we can't
afford on formula and meds that don't make any difference. I don't
know what the point of my post is but I need help and I don't know
where to turn. The peds are not helping me at all. I'm stuck at home
with this screaming baby because even when I go to the Y to burn off
some steam the childcare people come in halfway through my workout
because she won't stop crying.

-------------------------

Date: Sun May 2, 2004 6:59 am
Subject: Nitara's in the hospital

This is a generic note to ask for your thoughts and prayers. Nitara
has been suffering from severe GERD (acid reflux) and decided
yesterday that it hurt too much to eat, and rapidly became
dehydrated. She's been admitted to the hospital and will stay at
least through Monday, probably longer though, when she starts eating
better and feeling good.

The good news is that we finally got past the HMO barrier and she's
in the hands of a very good pediatric GI specialist and they will do
whatever it takes to get her feeling better. She's probably going to
be tube fed for now because she's still refusing to eat more than 1-2
oz. at a time. The GI doctor said that her skin folds are too thin and
she's not gaining fast enough, so essentially she's been growing off
her own body fat. She hasn't been eating well in weeks. She's
currently on an IV and looking and acting much better than she has in
days, flashing lots of smiles and cooing. The pediatric unit has
adopted her and they are all arguing over who gets to hold her next.

At first I was told that I am too tense and she is picking up on my tension
and that's why she won't eat. I said to them, feel free to try to feed her.
After many attempts at feeding her they admitted to me that it's not me.
So glad for the validation!!! No, folks, I did not cause her problems.
I am stressed out because my baby is starving herself. I'm stressed
because I am coming off of 12 weeks of bedrest, PPD, breast infections,
a 3yo who is acting out for attention, no family support to speak of,
and a husband who emtionally is not there. To his credit he is
physically there.

As if that is not enough, Abi is also not feeling well. After being
sick with the common cold for 2 weeks, it developed into something
much worse. I had to take her to the doctor yesteday as well. She's
at home being treated for ear infection, sinus infection, and
probably pneumonia. She's still acting okay though.

I'll give you updates as I'm able to. I'm hoping to get the laptop
hooked up at the hospital soon.

--------------------------------
Date: Mon May 3, 2004 7:44 am
Subject: Nitara update Monday morning 
Hi all,

Just wanted to give an update on Nitara. Yesterday her blood
pressure was way too high (that of a 10 year old child). They took
it 3 seperate times over a period of 8 hours. Of course we were all
concerned. I held her and prayed like I never have before. Maybe
it's just coincidence but the next bp check showed her within normal
ranges! They are not sure what caused it, or why it fell but we are
of course relieved.

She is just barely eating enough to avoid the nose feeding tube (had
to drink 1 oz per hour average), but she may get one anyway because
she's lost a couple oz. since being admitted. They want to increase
her calories and get her gaining weight. She is not spitting up
nearly as much so the meds are starting to work! Today she drank 4
oz. in one feeding, up from her normal 2-3 oz.

The staff love her a lot. They say she's a really sweet and happy
baby when she's not having the reflux. She will sometimes say "HI"
when she babbles and that is a running joke around here. However
when the reflux starts up she's miserable. We should be meeting with
the pediatric GI specialist today and she will probably order some
tests.

Thanks for your continued thoughts and prayers. We hope we can bring
our little girl home soon and put this all behind us.

----------------------------

Date: Tue May 4, 2004 8:01 am
Subject: Update Tues. morning

We had a very difficult day yesterday because the staff was not
communicating with me very well. She got cereal in her bottles but
they made it too thick and so she was sucking and not getting
anything out. Got exhausted and fell asleep. They were concerned and
put a tube down her, she vomited up all the rest of the feeding. I
told them no more cereal, it's obvious she's not tolerating it and
they got mad but oh well. Finally the GI ped showed up and said no
more cereal, but she's still not eating enough so the tube was put on
a pump and she was fed throughout the night while she slept. A speech
pathologist said her suck reflex is fine, so that's one good thing.

Her bp keeps going up and down and is puzzling everyone. She got a
kidney u/s yesterday and bloodwork and the doctor wants to talk to me
about the results. Normally they will just say everything's fine and
not bother talking so I'm really nervous.

----------------------------

Date: Sat May 8, 2004 6:13 pm
Subject: Nitara's home 
May 8
We are home!! Nitara came home yesterday and is settling back into
family life. We are so glad to have her, but also very exhausted. The
house is trashed and my tomato plants, which had about 20 little
tomatoes started on them, dried up completely because we forgot to
water them.

Before we left yesterday I was informed that Nitara's stool sample
contained a rare strain of bacteria.

In any case, they felt that since she was both sick with the
flu, and sick with the bacteria that she might have an immune system
problem. I forgot what it's called but it starts to show around 3-6
mos. because mom's immunity starts to wear off. The best case if she
had this would be that she would get monthly injections for life. The
worst case scenario would require a bone marrow transplant. I could
feel the fear creeping up into my throat and the more I thought about
it as I was preparing to leave, the more I felt a panic attack coming
on. I had to take some deep breaths and immerse myself in TV. Later I
asked the doctor about the tests and she said it takes a couple days
to get the results.

In the meantime she was sent home with a prescription for
antibiotics. She got her first dose at 10 PM just as we were about to
go to bed. The home health person had come and set up our nighttime
pump for Nitara and we were exhausted. Nitara threw up the first
dose, as well as her entire feeding, shortly after. So we had to
change our clothes and her bedding. Then we got her hooked up to the
pump and she started refluxing and we had to turn the pump off to
give her a break. Which kinda defeats the purpose. We decided the
pump was not needed; what was needed was a human touch during her
feedings. Besides, I'm terrified that she'll learn to roll over soon
and get strangled in all the tubing. At least I can tuck her NG tube
behind her and tape it to her shirt.

We also decided that we were going to not feed her for 6 hours during
the night unless she asked, so we could all get some rest. Instead
we would make it up during her daytime feedings. This morning we gave
her more antibiotics and she vomited the entire feeding, again, all
over me and her just after we had both taken baths. Great. No more
antibiotics, esp. since she's not even showing any signs of infection
(bloody diarrhea). The good news is that I've only had to tube feed
her once all day, she's been taking 4 oz. (120 ml) at almost every
feeding. I only had to tube feed 1 oz. left from one feeding today.

Reflux is harsh, frustrating, and scary. I think it
finally hit me when we got home and Nitara still had her tube in,
that we have a really sick baby right now. I feel really sad for all
of us.

------------------------------
Date: Fri May 14, 2004 10:10 pm
Subject: May 14

Nitara had a bad feeding day, totally refusing the bottle and getting
tube fed for most of the day. Usually she'll at least start with the
bottle and finish with tube. Very frustrating for me but hopefully
she'll outgrow it. Her officially diagnosis was GERD and Failure to
Thrive. She seems to be thriving okay now, though. 12 pounds 3 oz. as
of yesterday! :-)

I feel so cheated out of this bonding experience. I can't even
snuggle up to Nitara during her bottle feedings.

It was one of my favorite ways of bonding with
Abi as a baby. I just feel short-changed. At least she is really
sweet about literally curling her body into mine and sucking on her
pacifier and closing her eyes, surrendering herself to me in complete
love and trust. That's so special to me. Makes me feel so important
to her, and loved by her.

-----------------

Date: Sat May 15, 2004 8:01 am
Subject: sleep

Last night I woke up at:
11 PM to give Nitara her medicine through her tube
12:30 to feed her a bit by bottle
2:30 because she wanted to be held and her diaper needed changing
4 AM because that's her feeding time
5:30 because that's when she normally wakes up for the day

---------------

Date: Tue May 18, 2004 7:08 am
Subject: I'm so tired of this 
So the latest is that we are now starting day 4 of no eating by
mouth.

Oh and on top of that Nitara is starting to projectile vomit about 2
feedings a day. My oldest did this too, but would act hungry and take
more immediately so it was more of an incovenience than anything. But
here I am taking 45 min. to feed my baby every 3 hours by tube and
then 20 min. later she vomits it all back up.

-------------

Date: Tue May 18, 2004 11:36 pm
Subject: update . . and lessons that have come out of this    

Let's see . . .had to call a hematologist today because Nitara
has very high levels of a renal hormone that causes high bp and has
to get that checked out. Her bp ranged from 128-110 (90-100 is
normal) in the hospital. At one point it was 143!! Still waiting to
hear back from them in order to get an appt. at the Children's
Hospital.

Still waiting on lab results to see if she has a rare immune system
defect (she was tested because she had two illnesses at the same time
in the hospital). I think she's fine though. She got over croup
faster than both her big sister and her daddy.

I think I spent most of the day on the phone but I feel like I
finally got Nitara's health team in action again.

I have found that if I bolus feed
her and spend 45 min. pushing it down verrrry sloooowly she doesn't
appear to be refluxing it as much. I just put her in the Snugli and
walk around with her and give little pushes every so often.

I am still angry at how long this is all taking and how much work
I've had to do calling around, but at least we are very slowly moving
forward again.

Oh, and dh brought me some flowers today because he said I was doing
a lot of hard work and deserved appreciation.


I keep having to relearn a lesson that is a key point in my life: The
Buddist teaching that you are most miserable when you desire that
which you cannot have, and it blinds you to what you do have. I have
done a lot of thinking in the last 24 hours.

After spending 3 mos. on bedrest and terbutaline and having constant
cx during the last half of the pg, I gave birth to a beautiful,
happy, easygoing and mostly healthy baby girl. She is a joy to us.
She is happy being tube-fed and it has ended the feeding battles and
crying fits. Since refusing the bottle she has hardly cried at all
these last few days unless she has a good reason to, and calms
quickly. She wants to be tube-fed. I need to be an AP mama and listen
to her and respect her wishes. I will try to do some gentle
persuasion with the mouth feedings and seek the help of a therapist
but will not force anything. If she's happy with the tube than I will
have to learn to be happy, too, and just look forward to solids being
a new opportunity for her to regain some normal eating habits.

Today I had a nice bonding time with her, feeding her very slowly
over the course of 45 min. while holding her close to me in the front
pack. I have discovered that she hardly refluxes (at least does not
appear to be distressed) if I do it slowly. It's about 3x slower than
the rate she was feeding at by mouth, where she was choking and
gasping and having formula come out her nose while she was still
trying to finish her feed. So maybe there's a blessing in disguise in
all of this. Feeding are peaceful again.

--------

Date: Wed Jun 2, 2004 3:10 pm
Subject: June 2 

The latest on Nitara is that she's vomiting on a daily basis. Our
room smells like puke, and I've had to wash her bouncy seat and swing
padding several times. I think the tube is bothering her. It runs
down past her esophagas and doesn't allow it to completely
close, and she can easily vomit. I took it out for 12 hours and she
stopped vomiting, but was not eating well. It's a catch-22. I told
the Ped GI, who wants to schedule Nitara for an endoscopy and biopsy
procedure next week. She'll be put totally under for it, thank
goodness. I feel so discouraged. The good news is that she's still
developing normally. Not rolling over yet, but she's clawing at toys
and grasping things better every day, laughing (when she's not
hurting), and can sit up for a few seconds before falling forward.
Maybe she'll just skip the rolling over thing altogether.
--------------

Date: Sat Jun 12, 2004 11:30 pm
Subject: procedure and other stuff  

Well the endoscopy procedure went well. Nitara's insides looked normal so that
was good! She was starving after the procedure and ate a full 24 oz
in the next 24 oz. She's slowly starting to eat less and less
though. The biopsy results came back yesterday and she has no signs
of allergy cells, so nothing she's eating is bothering her. She did
show signs of recent tissue damage and healing, signs of ulcers.
Poor baby. At least she's almost healed up thanks to the meds. The
doctor said if she still needs the NG tube in 2 mos. she will get
the G-tube instead.

Another great thing is she's sitting up!! All of a sudden she was
balancing well in my lap. Today she sat on the floor all by herself
for several seconds. I keep a pillow behind her in case she falls,
but wow, she's amazing! Abi also sat at 4 mos. but I didn't expect
Nitara to be so early since she hasn't yet managed to roll over.
----------------------
Date: Wed Jun 30, 2004 2:56 pm
Subject: Something nice happened today

Thought I'd just share something that happened today. Kamini, the
girls and I were at CostCo and Nitara was getting the usual stares--
not the friendly kind for the most part. Then we sat down to eat
lunch there and I saw three healthy babies around the same age as
Nitara, 2 of them guzzling down their big bottles. I was feeling a
little sad for her, that for some reason she has this challenge in
life and we all have it with her, and sometimes I just wish she was
normal with her eating. She got hungry and I made a bottle and she
ate exactly one oz. before smiling and cooing and pushing it out
with her tongue. Tried to feed her but she was totally not
interested and started turning her head away and all that. We left
and as we were walking in the parking lot something caught my eye. I
looked down and was surprised to see a little business sized card
with Ganesha on it! Lying right there on the ground in my path! If
we had parked somewhere else or even walked on the other side of the
row of cars we would have missed it.

Kamini picked it up and turned it over, and it had the name of a
businessman on it, the kind you get in India, just a generic card.
But how special, and what a coincidence. Ganesha means the most to
me of all the Hindu gods. I was just thinking maybe God was trying
to tell me something about Nitara, that I was not alone in this,
that the Remover of Obstacles was going through this with us
somehow. Kamini was also moved by this event and said maybe Ganesha
was trying to say that it could be worse, that this is just a small
problem and everything will be fine with her eventually. I don't
know exactly what it meant but it's just one of those events in life
that you know was probably orchestrated by a higher power somehow.
Or so it felt.

----------------

Date: Fri Jul 9, 2004 7:53 pm
Subject: Update   

Something that's getting more worrisome is that her head is not
growing very fast at all. She's only 5th percentile for head size
while her body is 75th and her weight is 50th. The doctors are also
a bit concerned but what can anyone do about it? At least her brain
appears to be okay, she's alert and developing normally.

She's going to start feeding therapy at the hospital at the end of
the month. Hopefully we can get solids off to a better start than
bottles were. She's enjoying cereal and applesauce but prefers to
suck it off her paci rather than take it by spoon. I'm going to take
it nice and slow until we start the therapy. I don't want to mess
anything up. She's already afraid to swallow liquids because she's
got it in her head that it will lead to pain.
----------------

Date: Sat Jul 24, 2004 5:42 pm
Subject: New pump    
The home health people delivered a new pump Friday, one that's
portable and comes with a little fanny pack like thing. So today we
took Abi to an indoor amusement park and Nitara got hungry. What she
didn't finish by mouth I just poured into the pump bag, hung the pack
on her stroller handle, and hooked her up. When she was done I poured
some water in the bag to flush the tube and that was that. Easy as
pie! Glad we are starting to get our lives back. Maybe when it gets
cooler I can actually go and visit people again and see if they still
remember me.

--------

Date: Wed Jul 28, 2004 7:36 pm
Subject: tube     little_india

Ugh, Nitara just pulled her tube out again this evening. I can't put
it back in her. I can't bear the thought of it. . . and yet I must.
I let her play with her babyfood (applesauce) without worrying about
her tape getting gunky and me having to change it. After spreading it
around on her tray and hitting it and making some of it splat a few
feet away, she was open to the idea of me giving her some on the
spoon. She ate a few bites and then was done, but it's progress. She
didn't gag and vomit, she opened her mouth and lunged forward to get
to the spoon, and she seemed to enjoy it. Baby steps. Then I took the
opportunity to give her a nice long bath and not worry about the tape
getting wet. She had a lot of fun playing with the washcloth and
making an absolute mess of the kitchen (she took her bath in the
sink).

Then it was time for her last feeding and she only took 2 oz. Sigh. A
baby her size should be drinking about 6 oz. by now. Because of the
night feeds, I only ask her to drink 4 oz. but she rarely even
finishes 3. She's only had 18 oz. today. According to her doctor she
needs:

at least 24 oz. to stay hydrated
at least 28 oz. to grow some, 30+ would be ideal to build up her fat
stores

She cried because she was tired and I rocked her to sleep. She's
sleeping so peacefully right now. After V gets Abi to bed and I read
to her a bit, I am going to have to wake Nitara up and shove the tube
down her nose. I hope that she'll be half asleep and not fight it so
much, and hopefully go back to sleep and forget about it by morning.
Because normally when I put it in she gets so traumatized that she
shuts off for a couple hours, refuses to look at me, has a stone-like
face with no expression, and part of her little spirit dies for most
of the day and she kinda retreats into herself. It kills me. Last
time I was crying right along with her saying, "I'm sorry baby, I'm
so sorry I have to do this to you." It's no wonder she's failing to
develop in some areas.

I'm so tempted to just leave it out until next Tuesday but she needs
to at least stay hydrated. I hate this. We were having such a good
day today.

-----------------

From: "Darshani" <sukumaran@earthlink.net>
Date: Thu Jul 29, 2004 12:49 pm
Subject: NG tube placement   

Last night I did end up putting her tube back in. I got a suggestion
to pull a babyhat over her eyes. That, and the fact that she was
still half-asleep and the room was dimmed, and she was all rolled up
in a blanket, well it went okay. The most challenging part was she
kept turning her head side to side, because she was bothered by the
hat. So bothered in fact that she just coughed a little when the tube
went in so I think that was a good thing. ? Took about 2 minutes and
she was passed out again and hooked up to her night pump.

The whole process of placing the tube is:

1) assemble equipment: NG tube, wire that goes inside the tube, KY
jelly, two strips of tape that are stuck somewhere handy, a blanket
to roll her in, an air-filled syringe drawn back to 5ml, and a
stethescope. I am so organized now that I keep the small items in a
large ziplock bag and grab it when I need it.

2) Roll her in a blanket very tightly. Pull the hat over her eyes.
Screaming starts.

3) Quickly lube the end of the tube (btw it has to be measured for
length but I know Nitara's length already) and insert it into her
nose. When it reaches the throat she starts to cough and if she's
screaming hard it will be hard to slide past that point. I have to
wait until she takes a breath and push it in more. When I get to 26
on the tube, I stop pushing it in.

4) While holding it with one hand against the cheek so it doesn't
come out (when she cries or coughs the tube can work back out from
that pressure), I find the end of the tube, put the plug with the
wire attached between my teeth, and pull the wire of the tube. It
then becomes more pliable.

5) While still holding the tube in place with one hand, I grab a
strip of tape and put it over the tube from the point where it comes
out of her nostril and across her cheek, aiming down towards her ear
lobe (and keep in mind she's still thrashing and screaming). I grab
the other strip and continue the taping under her ear lobe.

6) Unwrap her and take hat off, then I have to check tube placement.
Usually if it's placed correctly, stomach contents have started
leaking out of the end of the tube and all over the bed. But if her
stomach is empty this won't happen and I try to place it when it's
empty so she won't vomit. Even though she's screaming and I want to
pick her up, I have to quickly check placement in case it ended up in
her lungs or something.

7) Connect 5ml syringe to the end of the tube, place stethescope on
her tummy, and push the syringe fast to push air into the tummy.
Listen for burp sound inside. If I get it, it's in place.

8) Pick up traumatized baby and rock her and give her paci and when
she falls asleep in my arms, hold her and kiss her and try to relax
and destress.

From: "Darshani" <sukumaran@earthlink.net>
Date: Sun Aug 8, 2004 9:22 pm
Subject: Today 

Nitara's had a horrible feeding day.
Today her feeding went like this:

7 AM: 0 oz. by mouth, 4.5 by tube
2 big vomits
10 AM: 2.5 by mouth, 1.5 by tube
1 PM: 1.5 by mouth, 3.5 by tube
4 PM: 0 by mouth, 4 by tube
1 big vomit

solids: 1 oz. at 7 AM, 0 oz. by mouth at 6:30 PM (milked it down and
put it down the tube)

Unfortunately we were not fast enough to catch the vomits on tape.
Too bad, they were quite dramatic. Envision one of those fancy
Italian fountains with the little nymphs with water pouring out of
their mouths-- only with Nitara it was formula.

----------

---------------------------

Date: Thu Aug 5, 2004 12:30 pm
Subject: GI appt! 

Nitara saw the Ped. GI this morning and she agreed to a gbutton!! I
told her I absolutely cannot do the NG tube any longer, it's killing
me. So sometime very soon (maybe in the next 2 weeks she thinks)
she's going to get a Bard Button put in. I'm nervous, but hopefully
things will go okay.

Second thing is that tomorrow she's going to get the barium study
done to see how badly she's refluxing and how fast or slow her
stomach empties. If it's really bad she may be a candidate for the
fundo (a surgery that fixes the valves at the top and bottom of the
stomach). I told her I wanted to wait on the fundo and give her until
12 mos. to outgrow it, but we are doing the study anyway. The only
thing that would change my mind is if it was very severe motility
problems, but I'm thinking it's not going to be that severe or she
would not be able to drink what she does and keep it down.

They are going to put some barium down the NG tube, then pull it out
and watch what happens. Then after some time they'll give her reg.
formula by mouth (if she takes it) and see if some of the stomach
contents come back up as she's swallowing.

-------------------------

Date: Thu Aug 12, 2004 9:05 pm
Subject: NG tube again, and parenting stuff 
From an urgent post this evening to my reflux board:

Nitara pulled her tube again.

I just put it back in. The first time I tried I think it went down
her trachea because she stopped breathing for a few seconds and was
making squeaking noises and her face turned really red. Scary! I
pulled it out very quickly but I'm afraid there may be KY in her
lungs or something.

Then I put it back in again and this time I'm pretty sure it's in
place because I checked placement with the stethoscope and a syringe
of air, heard the burp in the right place.

However when I went to feed her an oz. to test it she coughed a lot
and then vomited it all back up before I got it all down in the first
place. While she was vomting she inhaled and I think she may have
aspirated because she's still coughing a bit and sounds very raspy
when she fusses.

--------------

Date: Sun Aug 15, 2004 2:23 pm
Subject: The !@#$ NG tube is about to drive us all nuts 

Nitara is hell-bent on getting that tube out any way she can, even if
it hurts her. She hates it as much as I do. Her strategy up until
recently has been to hook it with her finger at the point where it
comes out of her nostril. Well she's discovered she can pull it from
the long end, and if she pulls it hard enough she can slowly peel the
tape off her face and the tube along with it. If I leave her alone for
10 mins. she's got the tube out. Yesterday I watched her yank, the
tape came off, she winced and cried, then yanked some more.

I have tried taping it up over her ear and down her back and she still
pulls at it, it just takes her longer. And by then the tube is all out
of whack and I have to retape the whole thing over again. Which is bad
for her skin. Her pretty light brown cheeks are developing white
stripes across them where the pigment is gone. I was reassurred by the
ped that the color would eventually come back, but it may take awhile.
(Same thing happened on her privates from her contant diaper rash and
it's still not back to the right color yet.)

Last night I put socks on her hands which she hated with a passion.
She cried, screamed, it was just pitiful. Then she started tearing at
the socks with her mouth. Pretty good for an orally defensive baby!
She managed to pull them off if I turned my head for a minute. Finally
she fell asleep and the tube stayed in all night.

This morning back to the the same. I decided I've had it. I'm leaving
the tube out today. She won't starve. She may not grow a whole lot
because she's not eating a whole lot. But she won't starve. I'll put
it back tonight before bedtime and set her up for a large night feed.
And hoping we find out the date for the surgery soon so I can start
counting the days. I may continue this until the surgery unless she
starts getting dehydrated or losing too much weight. I don't know what
else to do. The Ped GI said some parents will splint the arms so they
can't bend their elbows, but I think that's cruel. Okay for an IV in
the hospital, but not for everyday. How is she supposed to explore and
play?

-------------------

-------------
Date: Tue Aug 17, 2004 9:57 pm
Subject: And the big surgery day is . . . .   

. . . . . I DON'T KNOW! Boooo hooooo I've had enough of this waiting around.

We went for the consult today. The surgeon showed us a couple buttons
and I was surprised how pliable they were. I imagined hard plastic for
some reason. He then said that Dr. S (our Ped GI) would go down
Nitara's throat and into her stomach with the endoscope, blow her
stomach up with air until it rested on the side of her abdomen. Then
he would puncture her stomach with a spring-loaded device similar to
that used to pierce ears. The device would have the button attached to
it. So as soon as it was verified it was in the right place, that
would be that. No stitches or anything. We'd be there for about 36
hours if all went well.

The most frustrating part was when I shook his hand as we were leaving
and he said, "See you in a few weeks." A few WEEKS? Are you serious?
(I asked) He said they were very booked right now and since we are
lower priority, then yeah, a few weeks. I got back to the front desk
and the secretary said they'd give me a call in about 1.5 weeks or so
to let me know the surgery date, but they are so booked right now it
might be longer.

At which point I hit rock bottom. I've been enduring this because I
thought it was going to end soon. I told V I cannot ever place her
tube again, I just can't. I was being a bit emotional and irrational,
but can one blame me? I let her go 8 hours and she didn't take one
drink. Finally I got worried and told V he can place the tube if he
wants to but I'm not. I can't. I'd rather take her to ER. He took a
big breath, read the instructions, and did the deed. Came out a shade
lighter but he did a pretty decent job, I must admit. I told him from
now on he's doing the deed unless there's an emergency or something.
As soon as it was in I hooked up her pump and she went from screaming
in hunger to cooing and laughing. Why won't she just eat?? I get so
frustrated at times.

---------------
Date: Thu Aug 19, 2004 11:57 am
Subject: Nagging pays off!

I got a surgery date today!! Friday Sept. 3rd. Very convenient. V will
only have to take one day off work and hopefully she'll be home before
Monday.

--------------------

Sunday, September 05, 2004
We are home!

We are home, and I'm so relieved and glad! I love the new button. It's still a little tender for her, but it should heal fully within 2-3 weeks if all goes well.

Well we woke up early and I had instructions to feed Nitara normally until a certain time, and then Pedialyte until 10 AM. She had pulled her tube the day before, and I just didn't have it in me to put it back down again. Thought I'd wait and see, and if she refused to eat then I would go ahead and do it in the morning to hydrate her before the surgery. Well the little munchkin drank throughout the night, drank 4oz. in the morning, 2 oz. of bananas off a spoon! Then just to make me scratch my head more, drank a total of 7 oz. of apple flavored Pedialyte right before 10 AM.

Thank goodness for the sling! It's what kept Nitara sane until I had to hand her over. Oh, the worries of watching her be carried through those double doors.

After about 30 minutes, the surgeon and doctor came and said that Nitara did beautifully, that there was hardly any bleeding, and that doctor had gone ahead and done another biopsy while she was in there to make sure the antacids were still working (looking for signs of acid damage at the cellular level). I had to wait for about 20 mins. more, and then someone came to get me. I was led back to the recovery area, and there was Nitara, fully out still, and being rocked by a nurse. How nice! I took over and held her in my arms for about 30 minutes. Took the first peek at her button. It was not bad at all.

My mother in law told me some details about my husband that I didn't know up until Nitara started having problems. He refused to eat by mouth from age 2-10 months and had to be fed by a dropper. He vomited a lot. He had a bad gag problem and started solid foods late, and was resistant to eating them for a long time. He didn't start to truly eat solids (instead of just drinking milk) until the age of four, and he didn't eat normally until the onset of puberty, when his appetite came because of the natural growth spurt at that time. He suffered from aspiration pneumonia about every 6 months from birth to age 10, when he finally stopped vomiting. It sounds like Nitara is a repeat, but thanks to the tube I don't have to spend hours persuading her to eat like my husband's mother did.

One more thing I want to add. Nitara was diagnosed with Sensory Integration Dysfunction. A couple of months later so was Abi. Based on the behavior my mother in law describes about my husband, and based on my husband's own recollections, he had it, too. It does sometimes run in families and is outgrown in early childhood in most cases. SID can often be tied in with the digestive system. The therapist feels that this is the case with Nitara, as she tends to vomit more any time that her brain can't handle extra challenges: too much sensory input at once, stress, change of routine, teething, and colds. Abi is showing signs of outgrowing her SID and we hope that Nitara will too, just as her daddy did.

(April 2005) Nitara is now 14 months old. She is still having reflux problems but overall it seems to be getting better. Today she vomited once after gagging on something she was trying to eat.

She has started to lose her fear of food and is willing to taste just about anything, but will not eat more than a few bits per day. She just doesn't feel good yet. Some days she feels better and will eat a few crackers but most days it's just bites.

She is also drinking up to 6 oz. per day of water out of a cup!! But if we give her milk or juice she does not want it at all.

Nitara's growth is excellent. She weighs 22 pounds and is as healthy as can be other than the reflux. She's also one of the happiest babies that I have ever known.

July 2005: Nitara is now 17 mos. old. She is still having reflux problems. We had a rough 3 mos. of more gastroenteritis, croup (including turning blue), febrile seizures, etc. But the last two weeks have been great. She cannot hold much in her stomach at one time, but she's trying to eat! She's demanding food and swallowing about 50% of it. Just small amounts of crackers, cookies, croissants, and bread. She also enjoys broth and pudding. She will probably need more tests as to why she's not able to hold much in her stomach, and why she continues to vomit. However she's no longer afraid of food. This is so encouraging!

Jan 2006: Nitara failed a 2 month break from Prilosec. She started coughing, clearing her throat, and drinking tons of water. After 5 days of restarting Prilosec those behaviors went away. At this point, since she is almost 2 years old, it looks like her GERD may be a chronic, lifelong condition. However I'm thankful that the acid is being controlled with meds and we can avoid surgery. Her vomiting has drastically reduced, and except for stomach bugs, she is no longer vomiting on a regular basis. She is eating 50% by mouth and working on chewing more effectively. No longer spitting her food very much, but actually swallowing most of the time. She can take about 6 oz. gravity bolus at a time. Much improved from the 2.5 oz she was able to handle as an infant.

Reflux Journal, Page 2