Monday, December 3, 2007

There's that word again, "Sometimes."

So, I don't know if I've ever mentioned this or not, but we really don't like hearing the word "sometimes" when it comes to Maryam's health. Carly, Jennifer, if you guys are reading this, you can appreciate this. To the rest of you, here's why. At one point, Brett and I were considering renaming Maryam, Maryam "Sometimes" Langdon. SERIOUSLY! During our time in the NICU and several times since she's been out, when one of her docs or nurses uses the word "sometimes" we cringe. When she was born we were told that "sometimes" the surfactant doesn't work and the baby will need a PDA ligation, BOOM! Surgery the next week. Then, "sometimes" the PDA ligation doesn't help with the lungs as much as we'd like it to, BOOM! They're turning up her oxygen and telling us that the PDA ligation didn't help with her lungs the way they thought it would. "Sometimes" when the baby comes off of the ventilator they have to go back on, BOOM! Two hours later, she's back on the vent. "Sometimes" the vent can cause a disease called ROP, BOOM! She's diagnosed with ROP. ROP can correct itself, but "sometimes" in really premature babies, who are really small and have had lots of complications, laser eye surgery is required, BOOM! Double laser eye surgery. "Sometimes" when the baby can't stop throwing up and isn't eating enough orally to gain weight, surgery is required to make it impossible for her to throw up ever again, and we'll be putting a permanent feeding tube in so she can start to gain wait, BOOM! She's in surgery.....Get my point? Because sadly, I can go on!

That brings me to today. I have good news, and bad news. The good news is that Maryam's eyes have not gotten any worse nor does she have any side affects from the ROP! The bad news is that she is still "severely far sighted" at + 5.75 in the right eye and +5.5 in the left eye. AND, she's going to need a prescription for glasses. Dr. Chlorfein said he wants to wait until April to see if there is any change, but doubts that there will be since there was no change in the last 4 months. And "SOMETIMES" in babies who are far sighted the muscles in their eyes get tired from trying to focus on things close up and the eyes start to turn in. So, he wants us to call him immediately if we start to see her eyes turning inward. And if that happens, he'll write the prescription immediately so that her eye muscles can get a rest. However, he did tell us too, that so far he doesn't see any muscle problems in her eyes! Which is what I meant by there being no side affects from the ROP, yet.
After her Opthomology and Optometry apts today she has her RSV shot. She has only gained 5 ounces in 4 weeks! NOT GOOD! I'm really disappointed by that. I'm going to have to find out what I can do to help her gain more weight. Whenever I give her more food volume, her retching gets even worse than it already is. I don't want her to have to go through even more. Fortunately she has an apt. with Doctor Bromberger next Thursday in her Preemie follow up clinic. She ALWAYS knows what to do! This week's schedule....Today was Opthomology, Optometry and RSV shot. Tuesday is OT. Wednesday we're off! Thursday she has an apt. with her pediatric surgeon. Friday is OT again.

Next week is almost as busy!!!

Oh and Justin and Lynn's wedding was lots of fun! I'll post a few pictures so you can see.

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