Tuesday, July 29, 2014

Meet Hazel, my Tubie

My daughter, Hazel Grace, is a Tubie.

I didn't really even know what that was until recently, I'd say about a month or 2 ago.  I mean, I obviously knew that she had a gastrostomy tube, and I knew that it was for feeding, because it's what I had pushed for so that she could get out of the NICU at the hospital.  But when we brought her home for the first time in December, a mere 5 days before Christmas and a whole 5 months after she had been born, I was just kind of winging it.  I had already been pumping breastmilk for her since August, and she already nursed a little bit in the hospital, so I guess I just figured that the tube was just a good and 'easy' way for her to be able to get the calories she needed to grow since she has chronic lung disease, which means she burns more calories in just breathing than your average baby, and so was not able to take in enough on her own to grow.

But I guess I never really realized it would go this far (whatever that means), and I certainly didn't know there was a name for it.

Hazel will be a year old chronologically this Friday, on August 1, but her adjusted age, the age she would be if she had been born when she was supposed to be born, and not 4 months early at 24 weeks, is 8 months, which means, by 'normal' standards, she 'should' be eating solids by now.

And she's not.

I guess you could say she is, kind of, but it's nothing worth counting calories for...it's a half a baby sized spoonful of sweet potatoes or a tablespoon of whole milk yogurt here or there, but nothing consistent and nothing worth noting.  And while I am not completely negating what she is taking in orally since she does nurse well 2 or 3 times a day, and I know that every bite is one bite closer to oral, I think that I have come to the conclusion that Hazel Grace is not getting rid of her tube any time soon.

She's not going to magically start eating enough to maintain and increase her weight.  And my milk production is going down because, well, hey.  I've got 5 kids ages 16 years, 7 years, 4 years, 2 years and one year old.  Two of them are special needs.  Because of their needs, I have appointments weekly that I have to schedule during their prime-time, which is early in the morning.  I home school the 3 oldest kids.  I work from 4PM to 1AM full time and sleep less than 6 hours a day, none of which are consecutive, and I'm just flippin' tired and stressed and I've been doing this pumping thing for a year now and no amount of tea is going to change that.

And it's not that I'm jumping off the breastmilk bandwagon...not at all.  I fully intended to pump and nurse for at least a year, and hopefully longer than that, but I am tired of hovering at the edge.  I am tired of half-knowledge.  I am tired of waiting, and I am tired of being tired and stressed about producing enough milk for my sweet baby Hazel Grace.

With feeding pole in hand, I firmly plant my feet and proudly stake my ground:

Hazel Grace, my sweet baby Hazel Grace, is a Tubie.  She may not always be a Tubie, but for right now, she's a Tubie.  And for me, that means that more than just milk needs to go down that tube so that we both have the opportunity to continue to thrive and grow...me as a wife and mother of 5 beautiful children, and she as the Tubie that is.

And so, with one foot (boob?) on the breast feeding bandwagon, I am also taking a flying leap onto the blenderized diet bandwagon.

So someone throw me a line, because I'm flying blind!

Hazel Grace...wearing her brother's cap because he wanted to keep the sun out of her eyes!

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