Happy Birthday, Tubey!

www.FeedingTubeAwareness.org

Seven years ago today, Celia had her feeding tube placed.

I think there have been two days in my life I never want to relive. The first was when I was pregnant with Luke - I had a blood clot, and they thought a piece may have gone to my lungs. I had to have a nuclear scan, and sign a release form saying basically "We don't know what this will do to the baby, and you're saying if something does, we're not responsible." The second was the day Celia got her tube. As if setting up a date for surgery on your child wasn't bad enough, the day the doc wanted to schedule it was Friday, January 13th. On that same date, my late grandmother had had a stroke about 15 years before; 10 years before, my then 13 year old cousin died of an inherited blood condition.  That was NOT a good day, historically.  I do believe that they put in a good word for us with God -- everything went as close to perfectly as possible.  Thank the Lord, third time lucky. 

Deciding to place the tube was scary. Actually, it was downright terrifying, and Neal will tell you the thought process was nearly crippling for me.   I'm usually the "put one foot in front of the other and march" person.  I couldn't move.  I didn't march into the surgery-- Neal pretty much propelled me.  I knew we needed to do it -- we were out of options. We had tried playing with the formula; we had tried medications to make her hungry and want more formula.  Nothing worked.  Another of her doctors forbade a ng-tube, so while we weren't really keen on that idea (Luke was more petrified of an NG than we were of a "plain" G), we didn't have a "let's see if a tube helps" option like we had for Damien last spring.   It was "surgery and place the g-tube and hope it works," or "do nothing and know we will continue to watch her get sicker."  Of course, we were nervous just because it was surgery, but placing it also meant we were *admitting* that she truly was *that sick* and we had run out of other options.  I think that was the worst part--realizing that we could no longer control her condition with what we were doing.  It was starting to control us -- we were chasing her pushing the formula, spending hours doing the math to determine "how much more" do we have to get into her by bedtime, worrying as every time we went to a doc appt the scale was either not budging or going down, etc.  Of course, it affected the boys; it's hard to sit and play games when you're chasing their sister with a bottle.  The doctors felt that before we started Neocate in the first place, she was slowly starving to death.  It was a shock, but we truly didn't realize how sick she was, so moving on from that summer really just felt like starting over.  Watching her not drink was worse, because then we were very aware she wasn't getting in enough.  So that really increased the urgency/panic over "You HAVE to drink this."  We kept saying, "Not yet...not yet..." I now counsel other new-to-feeding-tube families: if feeding your child is controlling your life, it's time.

Celia & Daddy
Tubey Day

Agreeing to the tube was not an easy decision, but we didn't have any other left.   We had tried everything else we possibly could.  Honestly, it was Celia who made the decision for us.  It was not easy to sign the release forms--it was probably one of the hardest things we've ever done.   In fact, I could not sign them.  I handed the forms over and made Neal do it.  I held it together until they wheeled her out - I didn't want to cry in front of her.  I would hardly let Neal hold her--I was too afraid to give her up. I'd let him hold her, but my hand was still on her. Finally he just handed her over and sat with his arm around us.  The fear made *no* sense--she'd had anesthesia and endoscopies before, and Luke had had two surgeries, and I wasn't this much of a wreck. Comparatively, I was "perfectly fine." This one just did me in.  Once they wheeled her away, I lost it. I sat the entire time she was in surgery in a panic--I couldn't do anything but cry.  (I'm not sure what the other people in the waiting room thought our kid was having done, but I bet they weren't thinking "just" a feeding tube.)  As soon as they called us to recovery and said I could pick her up, I did, and held her until my arms went numb.  Neal slid my coat under my arms to prop them up.  I even held her when they wheeled her up to her room--I sat on the gurney holding her.  I just wasn't letting her go.  Looking back, I know it seems extreme--but that's how petrified and relieved I was during that day.

Neal was a rock that day, thank God.  About a week before, we had a huge fight.  Obviously, it was a really stressful time, and in hindsight, the stress was getting to us.   We were almost at a "pick a daily fight just because" point.  That day was "pick a smackdown." Knock-down, drag-out, all-out screaming brawl at bedtime.   THAT was when he admitted he was petrified, too. I had been going along for 6 months, trying to put on a happy face, and he seemed to behave as if he was thinking "Ok, let's just do what the doctor says and all will be fine." I thought I was the only one worried--as upset even as I was that day, knowing that *he* was worried too made a big difference.  Moral of that story: communication is crucial.  (And magically -- knowing we each weren't alone -- the fighting stopped.)

We had a visiting nurse come out for the first month. I remember jumping in my kitchen at the end, whirling Celia around -- with the tube in, she hit TEN kilos (22 lbs). She'd been stuck at seven for so long I wondered if she COULD hit 10. We were getting somewhere.

We have had our ups and downs - we've had to play with her formula, and she's had to have different tubes at different times. For two years she had a special tube that bypassed her stomach and fed her  directly into her intestine; thankfully she has outgrown the need for that.  

When she started school, she was only on night feeds - she got the difference between what she was supposed to have and what she did drink overnight.  As time when on and she couldn't drink enough during the day and the night feeds were taking over, we had to switch to day feeds.  Our school has been wonderful.  Last year, once got over the initial shock of the news that Notre Dame was closing, my first thought was "Who will take a child with a tubey?"  Every day, Celia goes to school with her pump running, and I am grateful that Edgarton Christian Academy came into being, with the teachers and staff who know her, love her, and turn a deaf ear to the beeping.

Thanks to how much she has blossomed with her tubey, when Damien needed his, we were not afraid.  When he first needed a tube at four months old, the hard part was just learning how to place it; feeding him was a breeze.  We were so used to Celia's tube, that the big kids sneered and said, "So when does he get a REAL tube?"  My friend Ahuva had a son with a feeding tube, and she told me when Celia's was placed that it would soon become "our" normal.  How right she was!  When Damien got his, Celia took it hardest, but she's been his idol.  He watches her and tries to imitate her.  He has a long way to go, too, and while a two-tubey family is not something we ever envisioned, I'm so happy they have each other for support.

Celia & Daddy
Disney 2012

Happy Birthday, Tubey!  We never envisioned we'd have you this long, and we have no idea how much longer you'll be around.  But thanks to you, we have a little girl who has been allowed to turn into a big girl.