We're on the move

Daphne and the rest of the family are now on Wordpress. Please update your readers and come visit D's new web home. Still a work in progress, so please bear with me. Hope to hear from you soon.

Recall

In case you haven't heard, there's been a huge recall of many kids medicines that are fixtures in parents' medicine cabinets. Hello Infant Tylenol!

Here's the complete list:

http://www.mcneilproductrecall.com/page.jhtml?id=/include/new_recall.inc

New lows - UPDATED

UPDATE: Just spoke with D's nephro for over half an hour. She is dehydrated, and her labs show it. The higher concentration of the Elecare is too much for her to handle. He said to give her water and he will speak with the GI. She needs more fluid, not less. I feel so much better that he is involved. He also gave me the name of a GI/Allergy Immunology person that we may consider seeing.

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Daphne's eating is as bad as it's ever been. She's refluxing more and her appetite is gone. Back to the GI on Monday. 24cal/oz Elecare and weaning Prevacid is a no-go. She's only had 18oz of formula today after a HUGE struggle.

At her endocrinologist appointment on Tuesday, she dropped below 14lbs again. Though she is heavier than the last time we saw the endocrin, she is dropping further from the curve. The only thing that gives me (a drop of) peace of mind is that she is keeping to her preemie curve in length, and her head circumference is catching up nicely. Just don't know how she will balance that head on such a tiny body. Kidding. Maybe you can tell I am on the verge of desperate.

Z called Dr. Moody the GI after the weight check, and he said the weight loss is not that concerning. She now weights as much/little as she did when he first saw her on March 23. Okay, except her reflux is worse (to which he replied, how do you she is refluxing...) and we have to force feed her.

We have an appointment at the Feeding and Swallowing Center in Paterson, NJ at the end of the month. They sent us a food/poop journal to fill out. I am glad that they will consider the big picture and not just the scale.

On other news, we are done with Synagis for the season. We got denied this month. We'll think about next winter when we have to.

Crazy Talk

I know I am going to sound crazy, but sometimes I think it was easier back in the NICU. I don't really mean that, but in terms of the coordination of Daphne's medical care, I didn't know how easy I had it then. Babies at our NICU were assigned to either a Nurse Practitioner, or to a resident. Daphne was clearly not a feeder-grower, so we got an extraordinary NP, who was the point person for her care. She was amazing. Kind. Friendly. Open. In the beginning, as we stood by Daphne's incubator wringing our hands, she would approach us with a smile and ask if we had any questions about our daughter. Quickly she learned that we always had questions, questions and more questions. Her door was always open. She was our friend, our cheerleader, our advocate. Our hardest weeks at the NICU were when she was on vacation. She gave me tips on how to nudge the neonatologists for this or that, and fought for Daphne during rounds many times ("she cannot handle too many changes at once so don't even try").

Now, I have to play that role. Except I have a full-time job. And I am more than a little emotionally involved (though our NP admittedly made some emotional decisions, like delaying D's extubation because she didn't want to risk her steady growth in order to have heart surgery). Now, when I feel like things aren't progressing adequately, I can't request a family meeting and within a couple of days have all specialists and neonatologists gathered in a conference room ready to answer my questions, and most importantly, talk to each other. All I can do now is call a doctor and beg that he or she will call his or her colleague and discuss Daphne's case. Or even return my call. A lot of times, I am the shot messenger when Dr. X disagrees with Dr. Y's advice. What I am learning over time, is that even though they may all think they have the right answer, nobody really knows for sure. I have the discretion to evaluate advice from all sides, and use what I find logical, appropriate, and what works.

Daphne's Hebrew naming

This past Saturday we had a ceremony to give Daphne her Hebrew name. Without further ado, meet:

Liat - or Li'at -  ליאת


The meaning of the name, which is common in modern-day Israel, is "You are mine." As our Rabbi so beautifully explained to our friends, family, and congregants who shared the moment with us, her name represents our desire to keep and raise this child to womanhood, which was far from a certainty when she arrived. It is not a coincidence that Liat sounds similar to Leah. We wanted Daphne to feel connected to her twin sister, even if she is not growing up alongside her.


We are incredibly thankful to those of you who could join us, many meeting our girl for the first time. It was a very emotional morning for me. Between feeling Leah's absence (acutely), hoping that Daphne wouldn't throw up on the Torah (she didn't), and just being joyful and grateful for the little nugget, I had my moment of breakdown after our turn at the bimah. 


Sorry we can't share photos with you, as it was Shabbat, no photographs allowed. 

More of the same

Haven't posted in a few days because there hasn't been that much to talk about. We saw Dr. Moody last week and he decided to increase the calories in D's formula, from 20cal/oz to about 24cal/oz. He still insists on weaning her Prevacid, but this time he wants to cut her dose by 1/4 instead of 1/2.

After my battle with the insurance company last week and several conversations with Drs and other moms who've been there done that, we decided to abandon the Prevacid compound (which is unstable, so we never know how much D is really getting - and the insurance company was giving us trouble about getting a refill every 2 weeks, instead of once a month). But giving D the solutabs is a lot more challenging. She turns hysterical when approached by a syringe. So I tried dissolving the solutab (half a 30mg tab in the morning, 1/4 at night, per Dr. Moody) in water and giving it in those pacifier-like medicine dispensers, with a Y nipple so the granules can get through. Great in theory, but D still manages to squirrel some medicine in her cheeks, then spit it out. Then I decided to be brave and put little pieces of the solutab directly in her mouth. Gasp. We've had different levels of success with that strategy. Sometimes she takes it all, gums it happily and swallows, other times she acts like she's being tortured. Then Friday and yesterday she threw up a bunch of phlegm with clumps of solutabs. I can tell because they turn maroon after a while, really appetizing.

The change in caloric intake has also been a challenge. As it turns out, you can't fool this child into having more calories. Guess what she does when you give her more caloric formula???? That's right, she drinks less.

I don't know what to do anymore. I guess I will call Dr. Moody. She's refluxing. She's still phlegmy. Her appetite is worse.

And just so I don't leave in such a negative note, yesterday I offered D some Gerber puffs. I completely expected gagging and vomit everywhere, but she ate three without gagging. Those things melt so fast that by the time she was tempted to gag, they were gone. She also enjoyed the challenge of trying to grab one by one and bringing them to her mouth. She's trouble, but she sure is cute.

What does money buy when you have a sick child?

Who doesn't daydream about winning the lottery?

When Daphne was in the NICU, it was one of those rare instances that having more money wouldn't make a difference. If we won the lottery, her odds would not improve by one bit. Sure, I wouldn't have to work all day counting the minutes until I could get to the hospital, and we surely would have bought a nice place overlooking Central Park, walking distance to the hospital. But money would not have closed her VSD or gotten her kidneys to start working. Daphne, herself, was my lucky ticket.

Winning the jackpot right now wouldn't get Daphne to start eating, or resolve her reflux. However, it would allow me to be there for her at a time when I wholeheartedly believe she needs me. We are lucky to have jobs in this economy. I am really lucky to have a job with great benefits, where people have been nothing but understanding when I was in the hospital waiting for the twins, then doing my NICU vigil, then back to work and taking time to pump AND leaving early to go see Daphne every day. I took some more time off when she came home, I had surgery, then she had surgery. They have been wonderful about giving me flexibility to take her to appointments. But I can't be there for therapy sessions, and I can only be so good at my job when I am on the phone fighting with the insurance company about covering her Prevacid. Can anybody explain to me why the insurance company (according to the pharmacy) will only cover 24 solutabs every 30 day period? How does that make sense?

I don't want to get into the politics of health care reform here, but let me just say that when you and your child have a collection of pre-existing conditions that could fill a museum, you end up very stressed about your job security. Which reminds me, I have to get back to work, and try not to think about the cute little person with no appetite at home.