Gaining more weight

I really truly appreciate all of the comments on my post tittled "Thinking".   Sorry this got to be soooo long but please read it.  I got Whitney weighed on tuesday.  I get her weighed at the same place every tuesday while we are out for her feeding/speech therapy.  Because of the trips we took I wasn't able to get her weighted for about 3 weeks.  Whitney's last weight was 15 lbs 12 oz.  This weight was 15 lbs 8 oz.   I was Devastated!  I was really hoping she'd be at least 16  lbs!  Let me recap....for all moms of tubie kids sake. Remember that every situation and child is very different.  Whitney has oral aversion, GERD (Severe Reflux), apiration, Heart and Lung issues, and utimately failure to thive.

I'm going to be posting some old picture this time.

all the spit the had to suction out which made her gag

Since Whitney was able to take a bottle (1 month old)  they gave her similac advance formula (from the hospital).  She took it okay and wasn't really throwing up on it.  But we could tell something was very wrong when she started to refuse the bottle by screaming when presented.  With all of the negative influences around her face and in her mouth,  like being on a ventilator/ intubated, suctioning her throat, hospital stays, being extremly sick when born, she never really learned how to eat and was unable to use her sucking reflex. 

By December (5 months old), we were at the pulmonologist and there a nutritionist came in and said she needs to be taking 'this amount' of food in and she's not and won't be able too so they wouldn't let us leave with out a feeding tube, the NG tube.  Getting a tube is a last resort when it comes to eating.  So it took three stressful days in the hospital to get one.  Our GI dr. was going to prescribe one when nothing else worked. Then we got a GI Dr. and he recommended Similac Alimentum for Whitney's formula.  When we gave that to her she would not stop vomitting.  I still have the mental image of my sweet little baby sitting in her boppy pillow being tube fed because/when she refused the bottle. And she would just vomit everywhere, not a little spit up but like 2 oz!  They didn't know if it was because of the tube or if it was the formula.  In hind site it was probably the formula and being over fed ( they wanted her to gain catch up weight).  They had her on  a med to help her esophagus contract and a reflux med. called Prevacid. Both of which did not solve the vomiting issue.

The nurses and therapist gave us all sorts of feeding advice

We tried to be there for every meal.

 So my mom and I decided to research for something else.  Eventually we made a good Goat Milk Formula.  Whitney started taking bottles again and didn't throw up as much!  So I did that formula for about 5 or 6 months now with no medicinces.  All the while trying my best to feed her the bottle and solids and still battling the oral aversion. She was finally gaining weight!  Not as much or fast as they wanted but we felt it was her pace, she's just small.  During this time we had done the Barium Swallow studies twice which "revealed" that she aspirated.  So we thicken her formula so she doesn't choke on it.  She also has gotten an Endoscopey done which gave us perfects results in the GI stand point.  No allergies or anything else so the Dr. said just keep up with the feeding/speech therapies....that made me mad because we have been doing that since she was home! She also got done a Cardiac Cath to help the pulmonary hypertension get better.  I hoped that all these tests and procedures would help but no such luck.  But I do not regret them.  Whitney was also on oxygen (at 1/4 L. flow) during this whole time. Her saturation levels on oxygen were 100% which I thought really helped her out.  Now she is on medication instead of oxygen and her saturation level is in the mid to high 90's.  She did throw up alot after the Cath procedure and wanted her on Zantac, which I think helped.

yeah, she has awesome hair

Getting an NG tube in the hospital

 Now recently Whitney was not gaining much weight, so  I decided to do what the GI dr. wants.  I put her the Alimentum Formula and back on the Prevacid (no Zantac).  As soon as I did that Whitney started vomiting again.  It started Thursday, then threw the weekend, and I called the dr's nurse on Monday.  Whitney threw up about 4 times a day and was acting so tired and just not her self.  They said okay that's not good (obviously).  And gave me samples of NeoSure and EleCare to try.  I was so upset that I didn't want to do anything they said, but I decided to try so that I could tell them it wasn't working.  It's only been a day and a half and Whitney has throw up twice.  I'm not sure if it is the formula or because she gaged on food.  She refuses the bottle of this....they come in weird flavors like tropical.  But if it works then they will write the prescription for it to the feeding supply company. It's 30 calories an oz. Because she is not consantly throwing it up I'm going to give it a try.  I just so desperately want her to gain weight.  So we will see... 

I also think that all of this has made it a lot harder for her to reach her mile stones.  She does crawl really well and could have the ability to walk but she is to weak and wasting her energy vomiting.  It's exhausting for us to as her parents to be constantly thinking about how much to feed her and when and then always cleaning up her puke and bathing her one or two times a day.  I am so grateful for my mom, she is so helpful and always willing to watch Whitney for me 

Some points that I've read that are true to me are:  It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important.Even those of us with family nearby may not have family members who are willing or able to learn. A lot of noise will overwhelm her sensory issues and a lot of crying will make her throw up. 
A simple cold for a healthy child may land a tubie child in the hospital. Unfortunately, this is true. There are a lot of things that keep tubie parents up at night. There really isn't such a thing as letting a tubie cry it out. The vast majority of our kids have reflux and crying quickly can lead to vomiting. Kids with reflux aren't always the best sleepers. Some vomit in the middle of the night. We investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep.It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. I am not sure my own family understood how stressful this was for me. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress...you are just waiting for something else to go wrong.

It may seem silly to you, but it might be cause for celebration for us if our kids eats even a small amount A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube.

I'm not to worried about her not taking the bottle because she is almost a year old which is when it's time to wean the bottle.  Since she never really takes it (only if she's asleep), I really want to get her eating solids and drinking large amounts from a sippy cup.   I realize that right now she is definitely not a canidate for tube weening due to her low weight.  I am so determined to wean her (eventually) that I have been doing a lot of internet research over the months and recent found and bought 4 books about it.  One of the websites is called feedingtubeawareness.com and they have a lot of good resources and links. Also there is mealtimeconnections.com  These are the books I have found but  I have not read them yet so cannot recommend them:

 How to Get Your Kid to Eat: But Not Too Much

Ellyn Satter

 

Just Take a Bite: Easy, Effective Answers to Food Aversions and Eating Challenges!

Lori Ernsperger

 

Baby-Led Weaning: The Essential Guide to Introducing Solid Foods - and Helping Your Baby to Grow Up a Happy and Confident Eater

Gill Rapley, Tracey Murkett

 

Diagnosis and Treatment of Feeding Disorders in Infants, Toddlers, and Young Children

Irene, M.D. Chatoor

 

 

 Also I have been thinking about the pro's and con's of a G-tube vs the NG tube.  I am going to ask another GI dr at a different hospital next week.  No Dr. has mentioned it to me yet but I have heard that it is 'easier' to wean. 

NG tube Pros

Placed non-surgically and parents can be taught how to place an NG tube at home.
It is a good tubie for short-term tube feeding. (less than 4-6 months)

NG tube Cons

• NG tubes need to be changed every 1-2 weeks, rotating sides of the nose.

• Little hands pull the tube out. Or puke it up.

• Taping the tubie can be a challenge. Little hands pull at the tape. Sometimes there is a reaction on the skin from the tape face turns red. Tape needs to be replace daily.

• There can be congestion in the nose and eye on the side where the NG tube is.

• The NG tube can make reflux worse because it holds the stomach open to the esophagus.
• Makes the gag reflex worse.

• It is the most visible of the tubies and therefore it can draw attention in public.

G tube Pros

• We feel it is more comfortable than the NG for our children because it eliminates the tape on the face

• Parents can easily learn how to change the tube at home

• Buttons can last about 3 months or so

• If your child is not feeding, no one would know they are a tubie. Low profile buttons do not stick out very far making it more comfortable for the child.

G tube Cons

• It does involve a surgical procedure to place a G tube initially. However,children have healed quickly from the procedure and resumed normal activity fairly quickly.  This is a huge con for me.

• Little hands can also pull out G tubes!

• G tubes need to be "vented" to release gas from the stomach. Think of it as belly burping.

• G tubes can clog. So be sure you "flush" medications with 7-8mls of water.

• Granulation tissue - it looks like little blisters and redness around the stoma.

 

 

So basically I'm thinking that the G tube will help eliminate the gaging, vomiting and oral aversions over time.  Nothing is set yet though of course. I'm just thinking about it.  And I just thought that I would try to explain more to you about her feeding issues.