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 water....so 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 machine...it 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!

Thursday, October 16, 2014

Feeling Defeated


I was all prepared to do C's 3 month update...a week late I might add, but after getting back from our lactation appointment I am feeling very defeated.


This petite little thing isn't gaining weight like she should. In the 3 weeks since she was weighed last she has only gained 3 ounces. That puts her down into the 3rd percentile and almost at the "failure to thrive" mark.


So after hearing that she is doing 5 feedings a day and sleeping through the night, we've been told to add in another feeding while also supplementing after each time she nurses.


 For me this feels like a step backwards...we were doing this when she was 1st born and I thought we were done.  She also told me to go back to pumping after at least 2 feedings per day.


 I know I might sound like I am whining and complaining and maybe I am, but I feel like I have a right to whine.  Breastfeeding has been important to me this time around since Hudson never latched, this time C has been bf'ing the whole time. I by no means am going to throw in the towel but I can't lie and say that this weight setback doesn't put a damper on my bf'ing journey.

 

So after hearing how we need to change her schedule and up her feedings I got even more defeated because I am leaving tomorrow for Nashville. I'll only be gone for 32 hours but it feels like a lifetime to me. I know Mack will be able to feed her when she needs to eat, that is not in question. I just hate not being the one to feed her, I enjoy our nursing sessions.


They wanted us to come back on Saturday for a weight check but I won't be back in time, so we will go back in Monday. She needs to have gained 3 ounces, if she doesn't they will start exploring why she is not eating enough. So please send us some good vibes if you have a chance.


Now onto her 3 month stats:
Height:  22 inches 10th percentile
Head:  40.9 75th percentile
Weight:  9.1 3rd percentile
Diaper Size: Newborn
Clothes: 0-3 months


 Claiborne,

You are sleeping through the night from 8:30PM to 7:00AM which makes your daddy very very happy. You love to smile and coo at mommy and daddy after you eat. Big brother Hudson just loves you to pieces. You still hate your car seat and spit up several times while in it.  We've been going on some long walks in the nice weather! You love to play on your playmat but hate tummy time (mommy did ask today about the fact that you aren't holding your head up...surprise surprise she said you are not strong enough to hold your head up yet).  From 5:30pm to 8:00pm you just scream, bath time does not help ;) We love you so much and I still am amazed at how you fit into our family so!




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