Tuesday, May 8, 2018

The G-tube is Gone!!

Are you as shocked as I am about that title? It still hasn't set in. 



We had been having a lot of leaking since they switched sizes on Savannah's g-tube and changed her mic-key to a mini one. We went in for silver nitrate to help with granulation twice and it didn't help. She still had granulation tissue, the sizing just didn't seem right, and she was leaking so much from the site. 

We went in on a Friday to figure out what to do next. When they saw her, they said it wasn't granulation tissue anymore and that there was an issue with her tract. It wasn't straight anymore and any size g-tube they put in was going to have the same issues. So we were faced with the choice of getting a new g-tube placement surgery or removing the g-tube. We were still giving propranolol through the g-tube but the rest was by mouth. They were all for removing it. I was a little a nervous. We called her pharmacist who said propranolol could be mixed with formula or even chocolate or strawberry syrup. So, we did it. We had the g-tube removed. They put down some skin protection (which is the purple stuff), silver nitrate in the hole, aqualcel pad with a teagaderm over it. That was it. So quick and and easy! It was way earlier than we planned but she is doing well. I will do an updated post on how the healing process goes. 

Here is what it looked like after the last silver nitrate application. 

This is how much she was leaking on the Friday we went in. 

We removed the tube because it didn't seem to be sitting straight anymore and this is how the site looked. She was also getting a rash from all the leaking.

So happy to be g-tube free!

:)




-Kate


9 months & 36-40 week update

This is a few days late but Savannah is 9 months old!




Here are some highlights from the past few weeks:
- Most of our lives revolved around the wean and it is over!
- Started with a new Speech therapist and we are very happy with her.
- We met with another hospital for a 2nd opinion on her possible NF. We are being referred to a neuro-ophthalmologist. We will see him this month and see if she has any other characteristics of NF.
- She has her genetic appointment later this month for NF as well.
- She is trying to pull up on everything.
- She still just army crawls.
- She is trying to wave bye bye.
- She loves to say dada.
- We had to move her crib down because she was climbing up the sides.
* Overall, she is doing really well.

Here are some pictures from the past few weeks:

First time in a high chair at a restaurant!

First time sitting in cart like a big girl!


Standing like a big girl with her new toy!






This face lol she means business!





-Kate

Tuesday, April 24, 2018

The Wean is OVER!

As the title says... The Wean is OVER! We have made it and it is glorious!



Savannah hasn't used her g-tube for nutrition in over 2 weeks! We are currently only using it for medication while we work on her taking it by mouth. She loves her erythromycin by mouth but nexium and propranolol is another story.

We are looking at taking the g-tube out in the summer. GI (and us) want to make sure she doesn't have any issues moving forward and that we don't have to get another g-tube later on if we remove it too quickly.


Overview on how we did it:
I would say our wean took 26 days. We stopped using the tube at day 20 but we still weren't in a good place until day 26.

In January, Savannah stopped responding well to bolus and pump feeds. It became a miserable time for both of us. I basically just started to let her take the bottle whenever she wanted and would bolus or use the pump afterwards. This was the start of our journey. We went from taking a few ounces by mouth in a day to about 10 ounces a day.  We did this for a few months while still trying to get her reflux under control. We had major GI doctor issues and had to change. We have an amazing GI doctor now! Once we got the right formula (Nutramigen), right medications (nexium and erythromycin), got off digoxin (a miserable heart medication) and gained some weight... we were ready to wean.

I researched everything I could about weaning. I contacted many online companies as well. We were prepared to pay almost $4000 but I wanted to try it on my own first. What would it hurt? Her Cardiologist gave us the go ahead to try and wean. He was okay with a 10% weight loss (normal during a wean) but nothing more. I bought this scale so I could weigh her daily and watch for too much weight loss. We also watched her diapers very carefully. We needed to be considered with less than 3 a day.

To start, we cut her morning feed in half. We did this for a few days and then cut it completely. We then had an official weight check with her pediatrician and then cut night feeds in half. We let her try the bottle first and then gave the rest through the pump. We did this for a few days until her oral intake started increasing and then we stopped the pump completely.

Throughout the whole wean, she didn't end up losing any weight. However, her weight curve has changed. She was gaining about a pound a month before and now we are looking at 1/2 pound a month. Both her GI and pediatrician are ok with this. We have great doctors who have been on board and so supportive.

Before the wean, she was getting 32 ounces a day (11 was from the pump). She now gets anywhere from 24-26 all my mouth. It is a large cut but now her reflux is basically non-existent. She was definitely being overfed. She was throwing up so much before and now we go days without anything. She is now making her own choices about how much she eats and when. She is now defining her own growth curve and is doing great!

We are working on purees right now. We found out she has hyposensitivity (sensory issue). We are working on that while getting better with purees. She is taking about 3 ounces of puree a day. We offer it for breakfast and dinner. She is getting better and better. Her favorite food is by Happy Baby. These are the best. They have tons of great flavor combos and have good calorie numbers. We try not to get any pouches lower than 80 calories because she doesn't take a ton yet. She also enjoys teething crackers as well.

Remember, we haven't used the tube in weeks now. However, you can't just remove it. You need to make sure you take the time to let it sit. Make sure your baby is ready to have it out. I recommended at least 3 months. You don't want to put your child through another surgery because you removed it too quickly.

-Kate




*Please remember, I am not a doctor or medical professional. This is just what I have decided to try for my daughter after research.
*Post contains affiliate links. I am not sponsored by any brand mentioned above. All opinions are my own.

Monday, April 16, 2018

G-Tube Wean Day 26



Wean Day 26- 
--Wake up at 7:30
*8:20- 75ml in 20 minutes
*9:00- 45ml in 20 minutes (cried to show hunger)
*10:00- 60ml in 15 minutes
*10:50- 20ml in 10 minutes (took a nap)
-- Level 2 Puree - 2 oz (50 calories)- beets, white beans, bananas
-- Honey bear sippy cup with water for practice
-- Small Throw up when gave medication by mouth - .5 oz
*2:00 - 60ml in 20 minutes
*3:30- 20ml in 15 minutes
*4:00- 55ml in 20 minutes
*4:45- 20ml in 5 minutes
*5:00- 25ml in 8 minutes
-- Cried we started puree- Level 2- beets, white beans, banana - ate 1 oz (25 cal) and threw it all up :(
-- Level 2 Puree - beets, white beans, banana - ate 1 oz (25 cal)
-- Honey bear sippy cup with water for practice
*7:00- 120ml in 30 minutes
*8:10- 90ml in 30 minutes
*9:00- 20ml in 20 minutes (passed out and wouldn't take anything else)
*9:40- bedtime; no pump due to total volume

= Total Oral Intake for Day 26: 610ml (20.3 oz) + 3 food = 23.3 ounces
= Total Volume for Day 26: 610ml (20.3 oz) + 3 food = 23.3 ounces

Comparing Day 25 and Day 26-

No pump today again!
2 ounces of puree.
Her weight was to 16 lbs, 10 ounces (down a little bit)
Tried to give propranolol by mouth and vomited again but not as much as yesterday.

Diapers -
Wet- 6
Dirty- 1

Mood -
Great mood and 2 naps, totaling about 2.5 hours.


-Kate





*Please remember, I am not a doctor or medical professional. This is just what I have decided to try for my daughter after research.

Sunday, April 15, 2018

G-Tube Wean Day 25 (Update)

We have been on this weaning journey for 25 days. We have a light at the end of the tunnel. Yesterday, we went to Savannah's pediatrician and she actually asked when the g-tube was coming out because she was happy with her weight gain!

We slowly worked on weaning off the pump. We worked on reducing the morning and then the night. In the past 10 days (since starting erythromycin), we have used the pump once. Everyday the goal was for Savannah to take 22-24 ounces by mouth. The one day we used the pump, she only took 21 ounces and we only had her take 1.5 ounces on the pump that day. She is so much happier. Her reflux has decreased significantly. After discussing with her pediatrician, we think she was overfed on the g-tube and that contributed significantly to her reflux. In 2 weeks, she gained 1/4 of a pound. We were worried this wouldn't be sufficient but her pediatrician was happy. She said she is making her own weight gain based on HER needs. It isn't about a number of ounces or number of calories anymore. It is about her. We are so thankful to have a pediatrician who understands that and supports us. She is ok with her gaining 1/2 pound a month.

We see GI in a few days. We hope GI is on the same boat as our pediatrician. We are hoping to get the g-tube removed within the next 60 days. Even if she is on board, we can't remove it just yet because she isn't taking all of her medication orally yet. She is taking the erythromycin orally but not the propranolol or nexium. We tried flavored (mango) propranolol and she vomited a lot... and I mean a lot! We are going to try unflavored propranolol and see if that works. As far as nexium, we don't really think she even needs it anymore. She isn't throwing up as much (or at all on most days). So we are going to discuss stopping the nexium.

While all of the above is amazing, there are even better and bigger accomplishments. The most important one for me, is my stress level and sanity. I do still worry about the numbers but it isn't to the extent that it was. I am leaving the house for hours and don't worry when she won't eat while we are out. She took 80ml while shopping in Target today. She will eat when she is hungry. I have been able to accept that. If she pushes it away twice, I stop. She is in charge and it is very liberating. I do still have some more work to do as far as letting go of those numbers, but I am on my way. It is getting closer and closer.

We have started working with a new Speech therapist as well. We are working on purees with her and trying to figure out Savannah's sensory issues. We have great days of 4 ounces of food and no throwing up and then we have days of 2 ounces of food and throwing up. You just never know. However, after one meeting with this Speech therapist, I have more faith in her than months of therapy sessions with our old one.

I look forward to posting about what her GI says next week and the results of an updated Swallow Study in a few weeks. This wean has been hard but we aren't tied to the pump anymore. We aren't questioning if we have all of g-tube supplies before we leave the house. We don't have to let her sit for 30 minutes after eating anymore because we aren't overfeeding her! It is an amazing feeling folks!

Anyway... here is how her day went!

Wean Day 25- 
--Wake up at 7:30
*8:15- 60ml in 25 minutes
*9:15- 60ml in 15 minutes
*9:45- 20ml in 5 minutes (took a nap)
*11:10- 40ml in 10 minutes
-- Level 3 Puree - 1 oz (22.5 calories)- carrots, apricot, beet
-- Honey bear sippy cup with water for practice
*1:15 - 90ml in 30 minutes
--Large throw up while giving medication - 2 oz
*3:00- 55ml in 6 minutes at Target
*3:45- 25ml in 3 minutes
*4:45- 30ml in 8 minutes
*5:30- 40ml in 10 minutes
-- Level 3 Puree - 1 oz (22.5 calories)- carrots, apricot, beet... same as lunch
-- Blueberry yogurt - .5 oz (12 calories)
-- Honey bear sippy cup with water for practice
*7:30- 20ml in 20 minutes
*8:30- 65ml in 20 minutes
*9:00- 45ml in 15 minutes (seemed like she might throw up so we stopped)
*9:30- bedtime; no pump due to total volume

= Total Oral Intake for Day 25: 650ml (21.2 oz) + 2.5 food = 24.2 ounces
= Total Volume for Day 25: 650ml (21.2 oz) + 2.5 food = 24.2 ounces

Comparing Day 24 and Day 25-

No pump today again!
2.5 ounces of puree and yogurt.
Her weight was to 16 lbs, 12 ounces (up a little bit)
Tried to give propranolol by mouth and vomited a huge amount! :(

Diapers -
Wet- 7
Dirty- 1

Mood -
No naps but still in a good mood all day.


-Kate





*Please remember, I am not a doctor or medical professional. This is just what I have decided to try for my daughter after research.

G-Tube Wean Day 24

Today was great. In the past 8 days, we only used the pump once. She is taking more by mouth and/or sittings each day. She is loving to try food and there aren't signs of aversion. I am not stressed by numbers each and every day. I feel like I can leave the house now. It has been great. I will give a better update on Day 25 and include what her pediatrician said at today's appointment. 



Wean Day 24- 
--Wake up at 7:40
*8:35- 80ml in 20 minutes
*9:15- 40ml in 15 minutes
*10:10- 60ml in 20 minutes (took a nap)
*10:45- 30ml in 15 minutes
*12:00- 30ml in 5 minutes
--Small throw up while giving medication - .5 oz
*1:00- 10ml in 3 minutes (wouldn't sit still)
*1:42- 10ml in waiting room at the doctor
*2:00- 20ml in doctor's room
*3:00- 60ml in 25 minutes
*4:00- 30ml in 15 minutes (wouldn't sit still)
*4:40- 60ml in 20 minutes
-- Level 3 Puree - 1/2 of the pouch, 2 oz (45 calories), seemed to like it- carrots, apricot, beet
-- Honey bear sippy cup with water for practice
*7:15- 115ml in 30 minutes
*8:45- 40ml in 15 minutes
*9:05- 50ml in 15 minutes
*9:45- 60ml in 15 minutes (sleep)
*10:00- bedtime; no pump due to total volume

= Total Oral Intake for Day 24: 695ml (23.2 oz) + 2 oz of puree
= Total Volume for Day 24: 695ml (23.2 oz) + 2 oz of puree

Comparing Day 23 and Day 24-

No pump today again!
Her weight was to 16 lbs, 11.5 ounces (but her doctor was ok with it).
Ate 2 ounces of puree.
Pediatrician is happy with progress thus far!

Diapers -
Wet- 7
Dirty- 2

Mood -
Good mood even with only one nap.


-Kate




*Please remember, I am not a doctor or medical professional. This is just what I have decided to try for my daughter after research.

Friday, April 13, 2018

G-Tube Wean Day 23 (no pump needed and ate 4 ounces of puree!)

Wean Day 23- 
--Wake up at 7:30
*8:15- 90ml in 30 minutes
*9:45- 90ml in 25 minutes (cried to show hunger and slept)
-- Level 3 Puree - harvest veggies, chicken, and apricot, loved it and ate1/2 of the pouch, no oral aversion at all, 2 oz (50 calories)
-- Honey bear sippy cup with water for practice
*2:30- 105ml in 15 minutes
*3:00- 30ml in 10 minutes
*3:45- 40ml in 15 minutes (cried to show hunger and slept)
*5:00- 20ml in 8 minutes
-- Level 3 Puree - harvest veggies, chicken, and apricot, loved it and ate1/2 of the pouch, no oral aversion at all, 2 oz (50 calories)
-- Honey bear sippy cup with water for practice
*7:15- 45ml in 15 minutes
*8:00- 45ml in 15 minutes
*8:35- 65ml in 15 minutes
*9:00- 30ml in 20 minutes (sleep)
*9:30- 40ml in 40 minutes (sleep)

= Total Oral Intake for Day 23: 720ml (24 oz)
= Total Volume for Day 23: 24 oz [this includes the 4 ounces of puree)

Comparing Day 22 and Day 23-
No pump today again!
Her weight was to 16 lbs, 13 ounces (down but still good)
Ate 4 ounces of level 3 puree today. This is the most she has ever eaten.

Diapers -
Wet- 7
Dirty- 1

Mood -
Good mood and took two long naps; morning and afternoon.


-Kate




*Please remember, I am not a doctor or medical professional. This is just what I have decided to try for my daughter after research.