Sunday, November 27, 2011


Eating is a basic skill that we are born with.  Latch, suck, swallow, breathe...bite, chew, swallow... most people don't give the slightest thought about these life-sustaining efforts; they just happen.  Unfortunately, it's not so easy for everyone.

Scarlett has struggled to eat since she was born.  She and I never had good breastfeeding compatibility, so we struggled through 9 weeks of lactation consulting before she was hospitalized (it was not tumor-related - she could eat fine from a bottle in the early days.)  Once she was in the hospital last December, she went through many days where she was not allowed to nurse, or it was logistically impossible due to IVs and stitches, so my milk supply dwindled quickly and we started formula.  She had her first NG tube placed on New Year's Eve to help supplement her feedings to help her gain as much weight as possible before her big surgery.  We fought to get her off the tube feedings before she left the hospital at the end of January.  A few weeks into her first chemo treatments, she was not able to hold down any fluids, so we were forced to place the NG tube again...and we're still there.  Eight months later, she still has a tube down her nose into her stomach, tape on her face and her feeding has not improved.

It is not uncommon for chemo patients to need help eating.  Chemotherapy drugs kill your appetite. Babies and children are often so uninterested in food and fluids that they need feeding support.  The short-term solution is an naso-gastric (NG) tube - through the nose, down the throat and into the stomach.  Tubes help with giving medications that taste bad, bypassing the gag reflex and giving nutrition when the patient loses the ability to eat enough on their own.  For Scarlett, this meant we could feed her very slowly overnight while she was asleep to avoid her throwing up.  It has worked; she has moved from the 10th percentile in weight (from birth to 10 months) to now, finally, the 25th percentile.  However, NG tubes are not typically used for long-term nutrition.

Last week, Scarlett's doctor began discussing a Gastric (G) Tube.  We weren't really surprised, but it is still a big pill to swallow (no pun intended!).  A G-tube is a surgically-placed feeding tube that goes directly through the abdomen into the stomach.  It can be used long term, but can also be removed easily when it is no longer needed.  I am not sure why we had never discussed a G-tube before; I am pretty sure they thought we could avoid it, that Scarlett would eventually eat on her own, and that they were protecting us from further surgery and scars.  Scarlett has been through a lot in the last year, even compared to other babies with brain tumors, and the doctors are very careful to try to avoid any additional procedures when possible.

Everyone tells me the G-tube is much easier that the NG.  It is hidden under the clothes most of the time, so it is not noticeable to the public (the NG is a huge attention grabber - we still get followed around stores by people wanting to ask questions, or overhear people talking about her in restaurants).  It also can't be pulled out by curious little fingers as easily as the NG.  It is placed under anesthesia very quickly and should not need an overnight stay in the hospital.  An external tube is used for three months to create a healed channel (like piercings), and then a "button" is placed, which is easily accessed for feedings.  It is eventually removable with just a small scar.  Other parents have been telling for months that G-tubes are life-savers, but since the doctors hadn't brought it up, we didn't either.  We were all pretty convinced the girl would just eat...but we were all wrong.

Since the G-tube discussion was broached a few weeks ago, Scarlett's eating has changed a lot.  She hasn't eaten from a bottle in over a week.  All fluids and formula are being given via tube.  She has, however, begun eating more purees and hand-held foods, but not nearly enough to think about going tube-free.  We have had occupational therapy consistently for a few months now, but with the nausea from chemo, we all agreed there wasn't much we could do.  Since it has been so long since Scarlett has eaten normally, she has lost some of those natural reflexes that allow us to eat.  She has no "nutritive suck", so she gets nothing from a bottle.  She has yet to learn how to close her mouth on a spoon, so she basically licks the spoon and gets a little each time.  Now, with the sudden drop off in eating, we have been referred to a feeding specialist.  She is also an occupational therapist, but she has many years of experience in just feeding issues.

We met her this Wednesday.  She watched Scarlett eat (or refuse to) and had some manageable, reasonable suggestions that Chris and I are working into our daily routine.  The main points:
  • Back off the bottles.  She is getting too old for bottles, so encouraging her to take one is regression.  We are focusing now on introducing free-flowing sippy cups...still no success, but I like the idea of moving forward rather than back.
  • De-stress.  We look for cues that Scarlett is over-stressed with feeding - pulling away, turning her head, fussing, spitting, swiping her hand at the spoon - and changing up the experience with a song, a toy or a different food.
  • Expand her horizons.  Along with sippy cups, she is now getting a little bit of everything we have.  If I'm eating a salad, I give her some.  For Thanksgiving dinner, she got a green bean, some mashed potatoes, and a dinner roll along with her baby food.  Basically, we're trying to get her excited about food, rather than make it something she fears.  
  • Get her back on a regular feeding schedule.  We resorted to continuous night feedings when she was sick, but now she's lost her regular hungry-full pattern.  We are trying to expand her stomach size with incrementally larger feedings through the tube to re-establish the hungry-full pattern during the day.
We're optimistic that this approach will get her back on track...eventually.  I am not under any false notions that there is a quick fix for this.  It is going to be a slow and arduous process, with either the NG or G tube, and there is no point in delaying the inevitable. Plus, any progress we may make in the coming months will be at risk when she has reconstructive surgery over the summer.  So, the g-tube will be going in sometime over the next few weeks.  We're hoping she can be comfortable and healing by Christmas.

We're disappointed, but not as upset as I thought I would be.  I'm so exhausted by the whole process that this just seems like another bump in the road.  Like always, I hope we are making the right decision.  As her doctor said, we can still hope for the last minute Hail Mary, but we'll make plans just in case.


Unknown said...

We had a G tube placed in March of this year, and it really has made all the difference in the world for us. Our son's feeding has improved exponentially and mealtimes are no longer such a struggle. One thing you may want to look at are button buddies, they are reusable g tube pads that help keep the stoma clean (instead of using gauze, I just throw them in a wash bag in with the rest of his laundry) it has kept him much more comfortable and granulation tissue free. There are a bunch of different brands of the little pads, but what we have is the button buddies, and they come in cute patterns for boys and girls! Good luck with your tube transition, it took my little man about a week to not be sensitive to the tube site.

Luna81 said...

I just wanted to comment on the sippy cups. I have a September 2010 baby and we couldn't get her to take ANY sippy cups until we found the straw ones. I think we have nuby ones. The straw is soft. She figures it out in two seconds and loves it and we haven't had a problem since. Just wanted to do a "suggestion. " We went with these after a speech pathologist friend suggested them. I guess hard sippy cups can lead to potential speech problems because of how they effect the palette.

Brandi Wecks said...

@Erin - thank you! We will definitely be looking into those as soon as the tube is in. Glad to hear it worked for you!

@Luna - thank you! We haven't tried a straw cup yet, but we have tired bottles with straws, and she just has no suction. I'm not afraid to try another though...

Sarah said...

Some VERY good ideas! Move forward, the new tube sounds like a much better idea all the way around. She'll get there, just may take her a little bit longer then you want it to. Hugs.

Jessi said...

I have a preemie who was born 15 weeks early and came home from the hospital with an NG tube. We did not want a g tube and were confident she would start eating enough calories on her own. 6 months later, we agreed to surgery and got the g tube. It was an adjustment, but overall, no big deal! I am happy with our decision, and would have probably done it sooner in hindsight. Good luck!

Renaissance Woman said...

One of my best friends had a little girl that needed to go from an NG tube to a G tube, and it really did make things better, especially since the little girl was on the cusp of her toddler years. Feedings went faster by comparison and it was less invasive than the NG tube for a little girl wanting to move around more. Later when their little girl was learning how to talk, she would proudly show off her "button." I know it isn't ideal, and it was difficult for my friend when they had to put it in as well, but it really made a big difference. She started gaining more weight and that helped things a lot. I'm one of the BBC board mamas and I just wanted to let you know that many of us are still thinking about you and Scarlett. Hang in there! You are amazing!