Things have been crazy here, to say the least. Chloe is doing well ... Nursing every 1.5-2 hours during the day and drinking a breastmilk bottle every 3 hours at night. Here's a look at her progress ...
8 week visit... 6lbs, 13 oz
10 weeks 3 days weight check ... 7 lbs 13 oz
11 weeks 2 days cardiologist visit... 8lbs 2.5 oz!
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Yes, cardiologist. We've been visiting a pediatric dermatologist to arrange treatment for her hemangioma, which is growing, but not at a scary pace. We are planning to treat with a drug called propranolol, which is a blood pressure medicine. Before using this medicine, we had to have Chloe's heart checked because certain heart problems would preclude the use of the propranolol. So Chloe had an EKG last week, which came back abnormal. So today we followed up with an echo and consult with a cardiologist. Thankfully, the echo came back normal, the doctor said that EKGs can be very misleading and unreliable, and that he would totally feel confident treating with propranolol as it's very safe, has a good track record, and will be used at a very low dose. He also reassured me that treatment of her hemangioma is absolutely necessary because of its proximity to her eye. I've been on the fence about treating it because it seems more of a cosmetic issue than anything. However, the cardiologist agreed with the dermatologist that it's medically necessary.
Because of her young gestational (corrected) age and her size, the dermatologist wanted to wait a bit before starting the propranolol. In the mean time, we are treating the hemangioma topically with timidol (a glaucoma medicine) and clobetasol (a strong steroid). We visit the dermatologist again next week, and I'd imagine they'll prescribe the propranolol now that we've got the all clear from the cardiologist.
On top of the doctors visits ... We've bought a new home! We've been thinking of moving on and off since shortly after moving her in 2004. We were even under contract for a house in New Orleans in 2006 or 2007( I don't exactly remember when) but that fell through because our house didn't sell in time. In retrospect, that was for the best because Cassidy joined us in 2008 and now attends M.A. which requires us to stay in jefferson parish and with the addition of Chloe, we surely would have outgrown that house. So our ideal choice of neighborhood and home has changed a bit over time, but we've still been house shopping.
With the expectation of Chloe's arrival, we began looking again. After Chloe's arrival and admission to the NICU, we found a house we liked as it had both a mother in law apartment and a pool. Jeff insisted that before we did anything, we needed to look at some other houses that were on the market. I agreed. Well, we walked into our new home and all thoughts of buying the first house vanished. This feeling grew as I explored further, finding a master bedroom, bath, and den on the ground floor that would work well as a mother-in-law suite! I fell completely in love with this house. We decided to go for it with the agreement that after our home sells, we will put in the swimming pool that Jeff has always wanted.
So my free time ... Between nursing, pumping, changing diapers, and sleeping, my time has been dedicated to purging our house of things we don't need, and packing up what we will keep. The movers come next week thursday, but we will move a few of the difficult to pack things this weekend.
Because what better time to move than when you have a preemie newborn at home?!
In addition to the madness of moving, Cassidy has started having some adjustment issues which show up mostly at night. She's struggling to sleep at night after she wakes in the middle of the night. It started out with her waking several times and then progressed to being unable to fall back asleep and crying in her bed for us for hours. Actually I should say screaming. (No, we don't let her cry by herself for hours on end. Part of me thinks that might actually work because then she wouldn't be rewarded with attention for her behavior, but I also worry it will add to her feeling that Chloe gets all the attention and damage her psychologically). On a few nights, she was awake from 1am until 7am when she got up for camp. Honestly, I don't know how she was functioning during the day. I couldn't have. Because of her difficult time staying asleep and going back to sleep, she's showing some anxiety before bedtime also.
I've been making an extra effort to spend quality time with Cassidy, both with and without Chloe around. I've also been trying really hard not to always put Chloe first, which is very difficult when Cassidy is asking for help with what seems to me to be trivial, but to her is very important. She is still very excited and helpful with Chloe, but has started making comments about Chloe getting all the attention and Chloe always coming first.
In addition to the madness of moving, Cassidy has started having some adjustment issues which show up mostly at night. She's struggling to sleep at night after she wakes in the middle of the night. It started out with her waking several times and then progressed to being unable to fall back asleep and crying in her bed for us for hours. Actually I should say screaming. (No, we don't let her cry by herself for hours on end. Part of me thinks that might actually work because then she wouldn't be rewarded with attention for her behavior, but I also worry it will add to her feeling that Chloe gets all the attention and damage her psychologically). On a few nights, she was awake from 1am until 7am when she got up for camp. Honestly, I don't know how she was functioning during the day. I couldn't have. Because of her difficult time staying asleep and going back to sleep, she's showing some anxiety before bedtime also.
I've been making an extra effort to spend quality time with Cassidy, both with and without Chloe around. I've also been trying really hard not to always put Chloe first, which is very difficult when Cassidy is asking for help with what seems to me to be trivial, but to her is very important. She is still very excited and helpful with Chloe, but has started making comments about Chloe getting all the attention and Chloe always coming first.
And then there's Sake.
Sake had surgery to remove 3 masses a couple months back while Chloe was in the NICU. While removing a growth on her tongue, they found aggressive Squamous Cell Carcinoma under her tongue. The prognosis is not good... 3-4 months left. Well since her surgery when she had a mass on her leg removed, she's been wearing a cone on her head to keep her from opening her leg wound. She had laser treatments to help it heal faster, but she opened it back up the first chance she got when we took her cone off for her to eat. At first Sake just laid around with her cone on looking pathetic and sad. She's now adjusted to it and we are on cone number 2 because the first one cracked in half. The dog is like a wrecking ball with this thing on. She head butts everything (deliberately), including us, and we all have bruised thighs from her "affection". She's showing extreme anxiety and is continuing to be destructive during thunderstorms. We've started putting the dogs in a baby gate circle now to try to limit her access to walls, doors, and all the boxes, both packed and unpacked. This contained Sake exactly 0 times when a storm came while we were out. We came home to boxes and packing paper tossed around the room. In fact, I could only open the door about 6 inches so Cassidy had to shimmy through and clear the debris in front of the door for me to get in.
Aside from the cone and the leg, Sake seems to be feeling okay. She's eating well (actually better than ever because following her surgery, she had soft food. Since weaning off the soft food, we've been putting warm water and peanut butter in with her food.) So because her quality of life is still okay, I can't justify putting her down despite the destructive behaviors even though I know her time is limited anyway. But coming home to destruction every time it storms (which is pretty much every afternoon during summer) is getting really old. And the thought of moving her to the new house just makes me cringe.
So any advice? What do I do with Sake?
