Tuesday, January 31, 2017

Nutritional failure, it's time for a G-tube

The Cystic Fibrosis Foundation recommends that children with Cystic Fibrosis should maintain a BMI at or above the 50th percentile because nutritional status affects pulmonary disease progression and survival in CF patients.  

Those who have been following my family since the beginning of my blogging days know that Nathan has always had issues with food and eating.  He was diagnosed as failure to thrive during his first month of life because of malabsorption.  When he was diagnosed with Cystic Fibrosis at one month old, he began taking the digestive enzymes that would help him absorb and gain weight.  He did gain weight as a baby once he started taking the capsules which we would open onto a spoon of applesauce.

We eventually just put the capsule in the applesauce when he was two years old. And he finally learned to swallow pills when he was three years old.  We have been so far removed from that phase that I really have to remind myself how awesome life became when we no longer needed to carry applesauce and a spoon (in a thermal pack) whenever we left the house.  And we wasted so much applesauce because we only needed a spoonful at a time and open applesauce didn't really last all that long before growing fuzzy mold.  I remember being so grateful to applesauce pouches because it would last a tiny bit longer no dipping a spoon into a jar.

But I digress, this post isn't about medication.  It is about Nathan's struggle with gaining weight and eating food.  He started eating solids at the same age other infants typically began eating.  Around 9 months old he started vomiting a lot and was put on Prevacid to treat acid reflux.  

He completed an entire feeding and swallowing program at St. Joseph's in Paterson when he was 4 1/2 years old.  This program turned our lives upside down.  Teagan was 2 1/2 years old and accompanied me and Nathan daily to Paterson, NJ.  We commuted 1 hour each way depending on traffic and sat in the waiting room all day waiting for Nathan to be brought into the "feeding room" where we would watch through a two way mirror. Some days Teagan, Nathan, and I sat in an unused "feeding room" because there was another little CF boy in the feeding program, and people with CF cannot be near each other because of cross contamination.

I blogged about the entire process - http://www.nathansfight.com/search?q=feeding - so I won't really go into depth about it.

It took a toll on me and made me feel isolated from my friends and "the real world".  I lost alot of weight just being away from my fridge all day, which was one of the only positives of the entire experience.  I would regularly go to sleep before 8 pm and felt depressed for the entire month.  But I was willing to sacrifice my own needs with the hopes that Nathan would overcome whatever was preventing him from eating.  The program itself was a blessing short term for Nathan because he started eating purees and chunky foods eventually.  But after graduating the program, the doctor and program lost its contract with Nathan's health insurance.  I had to decide between keeping our current health insurance and Nathan's pulmonologist and switching health insurance companies to keep the feeding program.  Being that we sought out Nathan's pulomonoligist and travel to see him, it was a no brainer decision.

Not only did health insurance pose a problem but spoon feeding my 4.5 year old every 2 hours pureed foods along with playing/pausing a preferred tv show between each bite all while strapped into a 5 point harness car seat occupied my entire day but it was something that was impossible to maintain with a very busy and demanding 2.5 year old running around.
4 years later, Nathan still has trouble eating and gaining weight. He never feels hungry, and doesn't like many foods. He refuses to eat while in school with fear of throwing up in front of his peers.  Foods that he is willing to eat at home he won't even think about eating in school.  He is bothered by the sight and smell of other kids foods.

It has been an up and down battle in terms of BMI but with his height skyrocketing this year, and his weight staying more or less the same, his BMI has plummeted.  In a few weeks, Nathan will be getting a g-tube to help him meet his daily caloric intake and gain weight. Of course I am worried, but those of you who know me, know I am relieved. I'll update more when I know more.  He has already done his labs (blood/stool) just to make sure there are no other possible reasons for his lack of appetite/weight gain (h pylori, c diff, etc).  He has had c diff in the past during hospital admissions but we are all pretty sure, including the gastroenterologist, that the g tube is unavoidable at this point.

Monday, March 14, 2016

Anybody out there?

Being that I haven't posted anything here since May of last year I was thinking of doing an update post and getting back into updated more regularly, not daily, maybe not even weekly.  I know that many people have many kids, but three is enough to keep me very busy.  So who is still here and what sort of updates would you like?

Thursday, May 28, 2015

Learning to ride on two wheels

This might be the year that Teagan ditches her training wheels.  She will only do it at Grandpa's house, with Grandpa's help because apparently I am no good at helping, and on this particular bike.

Maybe Nathan will be next.  Because of sensory issues, I am proud that Nathan is finally riding his bicycle with training wheels instead of a tiny tricycle.  The training wheels were not down far enough so the wobble was causing him major stress.  As soon as I lowered them so they were fully supporting him, he began riding the bike!

Wednesday, May 27, 2015

Piper - 16 weeks old

Little Miss Piper is 16 weeks old as of yesterday.  Life has gotten a lot easier after she outgrew the first 3 months of colic.  Each day past the three month mark has gotten easier and easier with her. She loves laying outside on a blanket and looking at the clouds, and is pretty much happy wherever I am.  The teething business is fierce and I am expecting to see the emergence of her lower front two teeth any day.  She sleeps like a champ all night long, with the exception of waking to nurse a few times.  But she basically sleeps right through those nursing sessions, as do I.

Wednesday, April 8, 2015

Piper's Birth

First I'd like to mention that I never thought I would go into labor before my due date, February 5th.  This labor was nothing like my previous two - my water broke on its own before my due date as opposed to going into labor at 41 weeks with Nathan and Teagan. 

Being that I never had my water break spontaneously, I was not entirely sure whether I was wetting myself or if it was in fact my water.  I was leaking every time I changed positions, when I stoop up, when I sat down, with a full bladder, with a just emptied bladder.  I changed into clean clothes a few times before I made a call to the Midwives of NJ, the same group of midwives who helped me deliver Teagan.  .

At 6:30 that evening, Jay drove me to the midwives to be checked.  Lisa quickly determined that I was leaking amniotic fluid and was about 3 cm dilated.  This was also the first pregnancy that I was group B strep positive so before heading home I received a dose of iv antibiotics. 

We left the office at 7:15 pm, walked around Target to get gift bags for the kids gifts, I was equipped with a super heavy duty pad, which I leaked through almost immediately.  By the time we got back to the car having finished our shopping, my pants were entirely soaked.  I did have a puppy pee pad in the car so I sat on that for the rest of our ride home.

When we got home my in laws were there with our kids.  I went straight up to the shower to clean off and then tried to get some rest in bed.  Teagan of course came up to lay with me, pouting about me leaving her that night.  She kept asking me questions but I finally got her to fall asleep.  I didn't even bother setting an alarm for midnight, the time we had to leave to drive back to my midwives office, because I knew Id constantly be checking the clock intermittently through contractions.  Surprisingly I did get a little rest. 

At midnight we drove back to the midwives office, and were met at the door by Lisa.  I sat on the monitor for about 20 minutes, got another dose of iv antibiotic and we stayed the night there.  The plan was to drive to the hospital at 6 am to beat traffic unless labor kicked in sooner. 

I slept a little between contractions until around 3:30 am. I went to the bathroom several times throughout the night and at that time I realized it felt more comfortable sitting up, so I grabbed all the pillows around me, sat with my legs crossed and leaned over the pillows.  I put my playlist on and just tried to relax.

I asked Jay to come sit with me around 5 am and rub my lower back.  A mixture of discomfort and exhaustion started to set in and at 6 am, Jay had to coax me to get up and head to the hospital because I was comfortable and getting in my zone.  

When we arrived at hospital, Jay parked near the entrance and I waddled into Labor & Delivery, squatting in the hallway for a contraction on the way.  Jay pressed the button to be buzzed in, "we are here to um have a baby".  That made me laugh, I mean what do you say on those intercoms.

He checked me in while I sat trying not to pee my pants.  My midwife and her assistant arrived as I was waiting for a room

In my room, I got hooked up to the monitor for about 20 minutes and sat uncomfortable in the bed until the nurses were done monitoring, asking questions and administering my 3rd dose of antibiotic.  At this point my midwife examined my cervix which was 4 cm, but 80% effaced.

Monitor came off and I was free to roam.  First I sat in bed hunched over pillows, then between contractions managed to make my way to the rocking chair to again hunch over pillows, then as I got my pants and shoes on to hopefully walk about I ended up sitting on the floor hunched over pillows again.

I scratched the walking idea and the midwife assistant recommended I go into the shower.  I kept switching positions between standing, sitting on birthing stool and kneeling forward onto stool.  I'm pretty sure my labor progressed the most switching between these three positions.  At one point I felt like I was going to vomit, I was so thirsty but the ice water was making me nauseous.

Lisa then said I could get into the tub to switch things up.  My back was killing me with each contraction I needed constant pressure applied to my lower back.  The awesome assistant kept switching out washcloths to cool me down.  She is also the person who took these awesome photos.

I kinda zoned out at this point,  I do recall the midwife telling me I could push whenever I felt like it.  I think that was around 10:30 am.   I didn't want to get tired too soon so I tried to be patient and controlled

There did come a point when I couldn't not push and even then I was trying to not rush anything because I was afraid to tear like I did with Teagan's birth.  When the midwife made note of the fact that I wasn't utilizing the entire contraction, I decided it was time and in a few more contractions she was out.

At 11:32 am she was born,  


The prenatal and postpartum care offered by The Midwives of NJ is above and beyond that which is provided by an obstetrician.  From the moment you walk into their office you recognize it as a space for women and supporting women.

The small details of a business may not be significant to everyone but I always take note of the details wherever I go.  Comfortable sofas surrounding a fireplace replace uncomfortable waiting room chairs.  Toys in the waiting room and exam rooms let me know the rest of my family is important and welcome as well.  Soft, inspiring music plays and friendly faces greet you.  I've been to numerous medical offices, believe me I have the experience with taking Nathan to appointments, where staff is not friendly.  The rooms here are decorated with feminine touches, desk lamps and floor lamps in place of bright florescent tube lights, a day bed with throw pillows in place of cold paper covered exam tables, and a face to talk to.  The appointments allow for extra time to discuss important points of fetal development, vitamins, nutrition, exercise, education, etc.

During labor, you never feel alone.  A midwife or a midwife assistant is always by your side, supporting you and advocating for the birth you want, with the least amount of medical interventions.  The photographs above were taken by the midwife assistant (talk about having an awesome job!) and presented as a slideshow accompanied by music as well, that was an emotional moment.  These are so special to me since it allowed my husband to focus on my needs instead of photographing the labor and delivery.

And after delivery, you still have the midwives to talk to.  You are scheduled for a 2 week checkup in addition to the typical 6 week visit and they also have complimentary mother care classes where you get together with the midwives and other moms who recently gave birth.  This is a nice addition to postpartum care because you realize things you may be experiencing aren't unique to your life.  I've also connected with a few moms whom I now consider friends.

I know we said we were done after 2 kids, and then again before having #3, but if ever the day comes when we decide to have another, it will definitely be a homebirth with Midwives of NJ.