Oh G

Today Meagan got her g-tube! It might seem crazy to be excited about something like a feeding tube - but I really am.  As our GI doctor said - sometimes feeding tubes have such a negative connotnation, like it's a defeat or a disappointment.  Actually I have learned it's quite the opposite.

I'm not going to lie.  It was a little bittersweet - not because I thought it was ever the wrong decision - simply because it would be a change to how little Meagan looked.  It was changing that cute belly I have snuggled for so many months.  I knew what I was feeling was normal - even when we do what needs to be done, sometimes it can make us feel a little twinge of emotion over what may seem like silly things to others - but actually have a lot of meaning to the parents in that particular situation.  I took a few "last pictures" of Meagan's bare little tummy and then got the kids settled with my sister in law who was nice enough to fly in and help (Thanks Aunt C!).  Then off to Children's we went!

Playing while waiting

Not so happy anymore - needed Daddy snuggles!

We  checked in and got Meagan all prepped for surgery.  Dr. B (the GI doctor) and Dr. P (a general pediatric surgeon) came to get Meagan and off they went.  It was about an hour total time, but only 20 minutes of that was the time needed to actually place her tube! Not that any surgery is "easy"... but compared to what Meagan has been through, a short tube placement sounded like heaven compared to a 5 or 7 hour brain surgery.

A few last bare belly pics

We saw Meagan up in her recovery room where we will stay for the next few days. The nurses showed me Meagan's stomach   It is definitely changed as the tube is now there, but it's just as cute.  They talked to us about the supplies we would need at home, caring for the PEG (what her g-tube is called), and also different circumstances that could arise and what to watch out for.  Before I could even ask, the medical supply company was on the phone with me and said they would actually send someone out tonight to drop off all Meagan's supplies, complete the paperwork, and go through the training of how to use all the different equipment and pump.

Meagan is such a joyful child.  She actually loves food.  Anyone who knows her sees her reach for food, and willingly try almost anything you give her.  However, they also see her chew on the one piece for the entire meal.  Or chew on it for several minutes and then take it out of her mouth.  Meagan is so innately happy and has such an interest and love for food, I am so relieved we have her g-tube now so she can simply eat for what it is to her - joy.  If Meagan wants to eat part of a pizza crust for an entire dinnertime now, there's no stress. We just put her calories through her tube.  If Meagan eats great one day but is short the calories she needs to keep growing stronger..it's no stress.  Just feed her through the tube. If Meagan still doesn't drink out of a cup for hydration - no big deal.  We hydrate her through her g-tube.

One other aspect that is going to be great is giving meds.  Meagan has always been a trooper with her meds, but it is very apparent she doesn't "like" to take them.  Many times I'm using all kinds of tactics with the syringes to make sure she gets the full doses by mouth each day and night.  Now with her tube, we can take all that negativity away from her mouth.  Tonight the nurse helped us give Meagan her meds for the first time through her tube.  It was so easy and we didn't have to upset her at all from her rest.

Didn't even have to wake her for her seizure meds

Meagan will have her PEG for three months.  After that we will come back to get a MicKey button which is a much smaller little cap she can keep easier for long term.  When we go home, she will start on pumped continuous feeds to hopefully minimize any reflux or vomiting that could occur as her stomach heals and gets used to the tube feeds.  If she tolerates those ok, then we will move towards bolus feeds (where we feed her whatever she didn't eat orally through her tube).

Overall today was a great day and another positive step for Meagan.  I'm looking forward to seeing how strong she gets now that we have this "safety net" for her eating.  I know it's early, but I know this g-tube is going to be such a blessing for her.   Thank you to all the helpful "tubie" families who guided us through this process and gave us all the perspective we needed to know this was the right thing for Meagan.