Wednesday, March 18, 2015

1 Month with Gtube

Claiborne has had her g tube for a month as of 3/13! I love seeing her face without tape on it! She seems so much happier compared to before her surgery. Weight gain has been a little bit of a struggle but as of yesterday we seem to be on an upward swing back to where she was before surgery. She is on continuous feeds for 20 hours a day right now. The goal is to get back to eating 3/4 times a day and then overnight.

Last week C had another swallow study done, she did better but still failed. We will keep feeding her small amounts by mouth to keep her skills up. She will also start PT next week in the hopes that we can get her start rolling over and pushing up from her tummy. Small steps in the right direction!

The night before surgery!

One last picture with her NG tube before they took her back

Sleepy girl afterwards

This is an example of what is called a gravity feed, she was getting pedialyte and then very small amounts of formula 24 hours after surgery.  We will move to these type of feeds during the day hopefully soon.

Claiborne was a little more alert later that night

Dancing with Daddy

Poor girl was really wiped out

Happy Valentine's Day from the hospital

Mimi came to visit with us

After 2 nights in the hospital C was able to come home! Our home health nurse said that is the fastest she has seen a baby come home after a gtube/Nissen surgery. They also wanted to get us home before the big snow storm.

1st bath post op

Claiborne got to watch the big boys go sledding 

She also turned 7 months old during all this! How is that possible!

We've finally had some warm days here so I've broken out all the dresses!

Sitting up like a big girl!

Wednesday, February 11, 2015

Feeding Tube Awareness Week

This week is Feeding Tube Awareness Week! Although we haven't been on this journey for long I felt compelled to share with y'all some common myths about feeding tubes.

Myth #1: Parents didn't try hard enough to make their child eat (I personally dislike this one!)

Fact: All parents try to feed their children, a feeding tube is usually the last resort. There are countless medical reasons a child cannot eat and those must be explored.

Myth #2:  You must use formula to tube feed

Fact: You can put milk, breastmilk, formula, or even pureed foods in the tube. Claiborne is mostly formula fed but does get 1 feeding of breastmilk per day (at least until it runs out)

Myth #3: The child's activities must be limited due to the tube.

Fact: Most tube kids can participate in any normal activities that other kids their age do. 

We had to learn that our lives didn't have to stop just because Claiborne had a feeding tube, we can go out and do any activities we want to, we just have more stuff when we do. 

Please take a moment this week and check out the Feeding Tube Awareness website and learn more about feeding tubes.

This website has been an amazing resource for Mack and I and our family! We have used it as tool to figure out what questions to ask and how to prepare for outings and surgery. 

T minus 2 days until the NG tube comes out and the G tube goes in!

Monday, February 2, 2015

Plan of Action Thus Far

We are counting down the days until Claiborne's G Tube surgery on February 13th! Are we nervous, yes, but we are so ready for our princess to hopefully start feeling better and to get that awful tape off her face.

Let me back up....after our last appointment with our GI he suggested we make an appointment with a pediatric surgeon to go over our g tube and nissen options. A GI doctor can perform the g tube surgery but since we were considering adding another procedure that is done by a surgeon he wanted us to talk to them first. So we made an appointment and really started to do our research on our options.

Option 1: Only have the g tube placed
Option 2: g tube placed and Nissen fundoplication

What is a Nissen Fundoplication you ask, it is a procedure where the top part of the stomach is wrapped around the lower part of the esophagus so that when the stomach contracts the esophagus remains closed and doesn't allow acid to come out of the stomach, therefore reducing reflux and GERD.

I met with the surgeon and set a date for surgery, we were still unsure about doing the Nissen because it does have complications, isn't reversible, and makes vomiting either impossible or painful from here on out.

While Mack and were weighing our options C really had a rough week, she pulled her tube out 6 times in a week, was refluxing nonstop, and screaming throughout the night.  We went to her ENT appointment and when they scoped her we could see just how much the acid is affecting her. That pretty much made our decision for us. So she will get the g tube and have the nissen performed at the same time, she will be in the hospital for 3-4 days post surgery.  I cannot tell you how relieved I am that we might actually make our girl more comfortable. We have also moved back to her rock n play to sleep because we have discovered that when flat on her back she is aspirating her saliva (yes we have a wedge but she moves off of it during the night). This has seemed to help, not sure what we will do when she is too big for it.

We've also been going to our weekly feeding clinic appointments which have gone so so. She is doing really well with her foods and not aspirating too badly.  The bottle is a different story, we first tried using a level 1 nipple (with thickened formula) and she go drink for about 2 minutes before showing signs of aspiration. With the level 2 nipple she couldn't drink at all without aspirating, side-note, she was drinking her bottle with the same "noises" as when I had been feeding which is extremely scary after everything I know now!

This last week she could no longer drink from the level 1 nipple and we moved to the ultra preemie nipple. Let me tell you, the poor thing sucked for a good 5 minutes and only was able to get about 2 grams out of the bottle! She still aspirated but mainly due to fatigue from having to work so hard to get the formula out. We will continue to work with her daily to keep up her oral skills, it is not about volume at this point so we do not care how much she eats or drinks.

We had some good news today!!! Yay! I had really forgotten what good news felt like. When C was 1st in the hospital back in November she was diagnosed with hydronephrosis or reflux of the kidney, she had it in both kidneys.  Today while not totally gone she has improved tenfold and we do not have to contemplate any other procedures at this point!!! Praise the Lord! They will keep watching her but gosh am I happy to cross one thing off of our "list" for the moment.

3 months into Claiborne's journey and I am still in awe of how wonderfully she has coped with everything. Hudson has proven to be the most amazing big brother and is super protective of her. We are so grateful for all of the prayers, they are felt and are working!

Wednesday, January 14, 2015

Day in the life

Every time I sit down and try to write an update something changes with our sweet Claiborne. I wanted to do a day in the life post to show what it is like to have a baby with a feeding tube. Throughout the post I will share what has changed in regards to our routine.

When we left off after Thanksgiving Claiborne was getting a continuous 12 hour feed over night and bottles every 3 hours during the day.

7:30am Wake Up! She is always so smiley in the mornings even though she's soaked through her pjs and swaddle. I turn off her pump, unhook her, give her her medicine, and flush her tube. I then change her diaper and get her dressed for the day.

8:00am to 9:00am we snuggle in bed and play with toys while Daddy gets ready for work.

9:00am - 10:30am Nap

10:30am - 11:30am Claiborne eats. When I first started this post Claiborne had a failed her modified barium swallow on December 30th and was immediately taken off all oral feedings or NPO. We would feed her by taking a 60ml syringe and filling it halfway and letting gravity take its course.

After 5 days of this we went back to the GI for the 1st time since the failed test, because C was still spitting up/refluxing they decided we should use the pump to feed her and spread it out over an hour.
We dip her soothie in milk or sugar water during the feeds so that she doesn't lose her sucking ability.

12:00pm - 1:30pm nap

1:30pm - 2:30pm Feed

2:30pm - 4:30pm nap. We still swaddle her when she sleeps to keep her from pulling out her tube, we use the rock in play because I have to wash sheets every morning.

4:30pm - 5:30pm Feed

5:30pm - 7:00pm playtime and bathtime

7:00pm - 8:00pm feed and bedtime, we put C down at 7:30pm and then stop her pump at 8. She gets hooked up again at 11pm for 8 hours.

New Years Eve we drove down to the river...this is how you jerry rig your pump in the car!

While at the GI the neurologist could see us within the hour, making it impossible for me to go home and feed Claiborne. They happened to have a syringe, can of formula, spoon, and cup of I mixed up some formula and fed her in the waiting room. I had been very nervous about doing this in public but I did and it wasn't so bad.

This is how she sits to eat now, I hate not being able to hold her in my arms and give her a bottle or nurse her.

At food therapy the other day they let her try some pears! She only gets about 4 or 5 licks once a day so nothing big but I really didn't think that I was going to be able to feed my baby so this is amazing!

She loves her weekend snuggles with big brother!

He's also kind of smitten with her!

We have lots of appointments and lots of doctors in our near future and some big decisions to make but we are so blessed to have these 2 amazing kids. 

Wednesday, December 3, 2014

Thanksgiving and Claiborne Update

I thought I would pop in and give a little update on Claiborne and life in general. We last left off with C coming home from the hospital. We had an endoscopy and biopsy scheduled about a week after she came home. I was super nervous about my sweet girl having to go under anesthesia.

The GI wanted to weigh her the day before the procedures to see if she was gaining weight.  When she left the hospital she was 9lbs 15oz and at her next weigh in she was 10lbs 3oz which was not good enough. He decided that while she was already under he was going to place an NG feeding tube.

Before and after...we ended up having to spend the night in the hospital which was no fun :(

Daddy and his sweet girl

She did well enough with her 1st overnight feeding that they let us go home after 1 night. Shortly after we got home the home health nurse came and brought our supplies and showed us how to work the pump. Claiborne is hooked up for 12 hours at night and gets 1 ounce per hour, she then eats 4xs during the day, around 4oz per feeding.

After 4 days I decided to try and replace the tape on her face.....

...she yanked that sucker right out! NOT FUN!! Thank goodness we have an amazing home health nurse who came out after going on another emergency call and put it in for us.

Claiborne has been such a trooper during all of this. We went back to the DR today and she was up to 11lbs 1oz which I think is great but the DR still see her as sluggish. They really wanted to see her make a big jump. We met with the dietitian and she wants to up her feedings over night. They also want her to see a food therapist as well as OT & PT.

Throughout everything this guy has been AMAZING! He is the best big brother in the whole world. When his classmates asked why sister had a tube in her nose he surprised me and told them matter of factually that she couldn't eat like us and the tube helped to give her food. Such a simple wise answer for my 5 year old.

We went down to Isle of Palms for Thanksgiving with my family. I am so glad that we decided to go, it was just what we needed. Mack hooked the pump up to C's car seat and hung the bag from the clothes hook.

Me and my girl before turkey :)

These 2 kids are my whole world

Hudson enjoyed playing on the beach....the ocean enjoyed 1 of his crocs

My 3 favorite people

Hudson loves the SC Aquarium and we take him every time we come to Charleston, this was my 1st time going and he loved showing me everything.

Mack snapped this at lunch and when I looked at it I realized I hadn't put on any make-up that day. I read recently that Carrie Underwood never has a make-up free day....that's great for her but I'd like to see her after sleepless nights and a baby with GERD. I have more make-up free days than make-up days and right now I don't really care. So maybe one day I can strive to have zero make-up free days but for now if you see me out and I don't have make-up on don't think I'm not trying, its just the last thing on my mind these days.

Sweet C in her SC bubble :) Had to get her in this for 1 pic

Thursday, November 13, 2014

Claiborne's Hospital Stay

Well just when we thought we had turned the corner in Claiborne's weight gaining issues we got sucker punched!

Let's recap shall we....C had dropped to the 3rd percentile at her 3 month checkup so we started supplementing after every feeding and even added a feeding back in during the day. They wanted her to gain 5 ounces in 4 days, she ended up gaining 7 which was awesome! She was up to 9.8 pounds and we would go back in 3 weeks to see how everything was going.

Last Wednesday I snapped the below picture during the day, C wasn't keeping anything down and couldn't even nap because of it.

Thank goodness our pediatricians' office is open until 7:30 so I could take her in once Mack got home. They weighed her and she was up to 10 pounds 5 ounces ( yay baby C ) but no fever so they didn't think it was a virus. They told me to give her pedialyte for her bedtime bottle.

Poor girl couldn't even keep the pedialyte down so we called the doctor back and they told us to head to the hospital. We are lucky that we live close to a hospital that has a pediatric ER, we didn't have to wait at all. They started an IV, drew blood, and then took her for an x-ray. The x-ray showed a lot of air in her colon, that coupled with her not being able to keep anything down bought us am admittance to the peds floor.

We finally got up to a room around 3:30am so there was very little sleep for C and myself. She also was now not allowed to eat, which if you have ever been told not to feed your hungry sleep deprived child you know how brutal this is. All we could give her was a soothie dipped in sugar water.

The worst was when I would have to pump and set her in the crib. She would just scream until I finished and could hold her again.

She had an ultrasound the next day which was clear for what they were looking for but they inadvertently found that here kidneys are backing up urine every time she goes to the bathroom. This condition is called hydronephrosis and they do not think it is at all related to why she couldn't eat.

So after waiting for the specialists to come and see her and deciding the next course of action we bought ourselves another night in the hospital.

By now I have forgotten what day it is, what a shower looks like, and that I have another child whom I haven't seen in 2 days. Thankfully our parents stepped up and helped us out big time with Hudson.

Friday they brought in a swing for C to see if she would try and sleep a little since she was literally getting about 3 hours of sleep at night and 20 minute naps through out the day. They were even giving her tylenol at night to try and get her to relax.

Friday morning she had an upper GI, which is where you drink barium and then they look at her with the x-ray is pretty cool. What is not cool....seeing your child literally taped down and screaming because she's starving. When they gave her the 2 ounce bottle of barium she downed it in about 5 seconds, the techs were shocked.

The Upper GI showed that she has severe reflux :( That night we started trying to ease her back into eating by giving her an ounce of pedialyte every 2 hours or so. Poor girl was so angry when she would finish.

Mack enjoyed swooping in for snuggles after work.

Friday night they stopped her IV fluids and let her nurse on demand. She slept a little better but was still hungry and uncomfortable.

She was even happier Saturday morning when they said she didn't have to have a barium enema! They had been able to see what they needed to on an x-ray the night before.

We took a long nap on Saturday while waiting to be discharged. I practically ran out the doors when they said I could go get the car. I did get concerned though b/c in the time I went to move my car poor girl threw up all over herself. I was so scared they weren't going to let me take her home...

Thank goodness they decided to write her a prescription and send us on our way!

After getting C settled at home I promptly relaxed with a glass of wine, some JT on pandora, and a nice bath.

I really missed by big guy while I was with C but he was is in wonderful hands!

We went to our regular pediatrician Monday and Claiborne had lost 10% of her body weight since Thursday :( She is still not eating as much per feeding as she was but we are slowly working her up. She still throws up after some of her feedings and we head to the pediatric GI doctor tomorrow to come up with a plan of action. The pediatric urologist will be next week.

The most frustrating part of all of this is the fact that there isn't a "quick" fix, this is going to be an ongoing issue that we are going to have to manage as we go. I hate seeing my sweet baby girl uncomfortable and in pain and know that there is little to nothing I can do to help her other than holding her upright after she eats, having her sleep at an incline, and giving her her medicine.

Thanks for all of the prayers, we have felt them!

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