Saturday, January 17, 2009

As if I Needed Something Else to Obsess About

Mallorie was born with spina bifida, along with some other things, and while she was in the NICU, we got to meet a sweet specialist, Dr. O, who runs a spina bifida clinic at that big children's hospital. She told me how children who are in the clinic can see most of their specialists on a regular basis, in one long clinic day. Typically, in one visit day, the child might get a renal ultrasound done, or other ordered testing, and might see a urologist, neurosurgeon, orthopedist, PM&R (physical medicine and rehab) doctor, and Dr. O. And if they worry about you doing something unorthodox like feeding your baby solids through a g-tube, you might also get to see nutritionists regularly. :)

And they validate your very expensive parking ticket for the day, and most days feed you some lunch. Very classy, and very convenient, if you happen to need to see ALL those specialists! One trip, all done. And I loved this Dr. O, instantly, because she was, literally, the FIRST doctor there who spoke as if Mallorie was going to survive. She even talked about how Mallorie might, years in the future, get surgery for her club foot, so she might walk one day. I remember thinking to myself, WALK? Did she look at her legs with the knees that bent backwards? So I loved her right away, and she didn't give me some song and a dance about why we simply had to have genetic testing done on our child.

In the same NICU visit, Dr. O gave us a binder full of information about spina bifida and hydrocephalus, and I suddenly remembered that parents of kids with SB were always mentioning "latex precautions" when I'd ask them about their child's allergies. Taking precautions to prevent exposure to latex - esp. in the medical setting - because SB individuals are higher risk than the normal population for eventually developing a latex allergy. It had occurred to me to ask, because we had just purchased and brought with us to the NICU, tied in a cute pink ribbon, a cute set of "mimi's" (pacifiers), the brand we have used for all of our children, and wished to use for Mallorie. Her Valentine's Day present. They contained latex. She told us, yes, that limiting/preventing exposures to latex would be very important for Mallorie, and I remember her telling us specifics about how we should use silicone pacifiers and bottle nipples, which diaper brands were not supposed to contain latex, and some other things that I can't even remember.

Why am I mentioning this? Because I left John with Mal a couple of days ago, and went to work. When I returned, he showed me this (which looked MUCH more dramatic at the time):
A couple of blisters on Mal's heel and back of her ankle. Earlier that same morning, I had noticed a blister under the spot bandage covering where she'd had bloodwork drawn from the other heel, and now this. About an hour later, we realized that she'd had a sock all day on the 2nd heel.
The sock had non-slip tread (made of rubber) on the sole, and when we looked inside the sock, we could see where the rubber material had gone through to the inside of the sock. So all day her heel was exposed to this rubber material, and there had already been some thought that the first blister on the other foot was from using a latex glove to warm the heel prior to collecting blood.

So we probably have to assume she's developed a true latex ALLERGY. The scary thing about allergies, is that first time you show signs of allergy, it might not be terribly dramatic. The next and subsequent times you are exposed to the allergen, the reactions can become more and more severe, and the real fear is that there will be an anaphylactic reaction, which can be deadly.

Latex can be in so many products ... clothing, rubber bands, bandaids and wound dressings and tapes, balloons, teething toys, .... Certain foods can also cause allergic reactions in individuals who have latex allergy. Bananas, avocados, and mango are the ones I remembered - I guess tropical foods? This afternoon, as I am mixing up some rice cereal and Gerber bananas to help slow down the diarrhea, is when I'm remembering all of this, though. So I give it in her tube, and moan because I know she likes bananas.

OK, I'm lying. So far she's only ever made a face and shook her head back and forth when we've offered her tastes of banana. And the only time I've gotten around to giving her avocado was when I gave her some guacamole, which she promptly vomited back up. What I should actually say is that I like the "idea" of giving her bananas, and avocados ... Bananas are so easy to mash up, and avocado is the big magic calorie food everyone says we can stick in the tube for weight gain. And it makes me happy each time I stuff foods in that tube, because we received such strong recommendations and so many visits from nutritionists after mentioning she'd be getting "real foods" in her tube, and not commercial formulas. So the idea of giving her avocado to help with weight gain makes me grin.

Not that she needs weight gain. OK, Dr. B, you can stop reading right here. Lindsay, too, if you're gonna tell Lewis. Carley was driving me back from work to the hospital last night, and we were discussing the new meal volumes we are giving Mallorie (165 cc vs 150 cc), and whether or not she is actually tolerating that volume. ESPECIALLY when I just decide to ADD something extra, like cereal and fruit or baked yams, and don't lessen how much milk I give along with the food. And Carley turned to me and said, "You know, she isn't underweight. No matter what they said, she didn't need to get that weight back." That's what I was saying, all along! But somewhere, I got caught up in the frenzy when Lewis showed up at our door with his lie detector scales tucked under his arm, and I agreed we ought to be getting her back to 22 lbs. Even though she's short and fluffy, and now has her triple chins back. And her "birds."

I'm asking you. Does she look at risk for being underweight?



Of course, now, we can't go backward and let her drop back to that svelte (ha!) 20.5 lbs, because Dr. B and Lewis would know something was up. And I'd end up feeling guilty, again. But I, for one, am praying for a growth spurt ... a height spurt, if you will ... during which I hope we can forget to increase her intake and just let her settle into a nice, healthy weight that allows her to BREATHE!

4 comments:

Anonymous said...

You KNOW I don't want that baby gaining alot of weight!! My concern is if she is LOSING weight, we have lost some ground. I don't like that. Get it right sister!

Dr B

Cathy said...

Connie you mentioned the blister but not to the extreme you now post. I obviously got worse. Poor baby, with those mean socks. i have heard about this allergy, yuck.I love how you refer to her as fluffy. She is precious just like she is.! Thank you for the post!

May said...

Hey now that you mention it, Vera is super allergic to Duoderm, the one on her face! Could it be she has SB? hmmm...how was Mal's SB diagnosed?

And yes, they keep saying Vera's not getting enough, but look at her, double chin already! And the fatter she gets the more difficult to breathe. Sometime it's best not to fuss over the weight issue but i know, it's hard!

Glad you're back posting.

Laurie in Ca. said...

Oh my short and fluffy little Mallorie. Look how beautiful she is.
I am so glad you have internet access Connie. I have missed you so much. I never realized how fragile these sweeties are to allergies of all sorts. And socks?? I would have never guessed those. And if you compare the first and second picture, she doesn't have a double chin, it is the position she is in:) I get that too!:) Her little rosebud mouth has healed so beautifully!!!
Dr. B sure keeps a close eye on you girls and now I have a great face to put to her comments. I love her. I love you too girl and was so stoked to see your comments on my blog this morning. The blog you forced me to start. Have I thanked you yet?? This should have probably been an email but you know me, yack, yack, yack. Oh, before I forget, the "book" Isaac is holding in the picture is a PLUMBING book from the library. If you click on the picture, you can see it better. My day of posting pictures wore me thin, but I learned alot. More to come on the coke stuff.

Love, Laurie