Thursday, August 27, 2009
So, tomorrow's the big day :)
This video explains the heart cath procedure:http://www.youtube.com/watch?v=xwh3tlFaVm0
Seraph is so happy tonight. She's playing with her alphabet town toy.
I'm excited to hear good news about her heart and pulmonary veins. I'm sad that she'll have to be intubated for the procedure. Silver lining: she's healthy enough to come off the vent. I pray she'll come off it quickly. She hates it sooo much.
I hope it doesn't hurt her voice. She's just coming into her own voice - cooing and trying out different baby sounds. Sometimes she sounds so much like Angel that I can't tell who "talked" unless I'm watching their mouths.
The actual procedure should start just before noon. Please keep her in your prayers. They want to keep her overnight to watch her breathing. If there are no complications, we'll have her back Saturday morning.
The surgeon will tell us his general impressions....but we really won't have results until they compare the videos and numbers to the last heart cath. In question: will she be able to have the 3rd heart surgery she'll need to survive (the Fontan). Are her pulmonary veins big enough to handle the extra pressures the Fontan would create? How are the pressures in her heart now? Is everything working as it should? Is her heart valve leaking more than normal?
It's a big day for my little sweetie - I hope she does well. Thank you for all your prayers and support. This is a big milestone in her journey - thanks for checking in on her progress.
Wednesday, August 26, 2009
Angel climbs onto the swing all by herself now. I need to take a video so you can fully appreciate the way my heart jumps around seeing her stand in the swing so she's tall enough to play with the buttons. She sits down after a while. When she's all done, she climbs out.
Beautiful Rabbit used to climb on everything, too. She never fell. Angel's following in her footprints.
I'm going crazy. Nesting - decluttering the house. I hid my computer mess in an armoire. I'm quite happy with the results. (pictures later). Seraph's heart cath is on friday. We expect good news. She's doing so well - esp with her physical therapy. Everyone (even her cardiologist) expects good news. I feel good about it.
However....that doesn't keep me from going crazy. My patience is just gone. I can't stop cleaning. I'm not sleeping. Please keep us in your thoughts and prayers on friday....and cross your fingers and toes! Sexy Haqon is feeling the pressure, too. My poor kids - having both parents at zero patience levels.
They FINALLY started building the house in the lot next door. My first thought: yay - now people will stop parking there! (don't ask). I'm excited to live next to something prettier than weeds :) I'm sad because my kids LOVE LOVE LOVE playing in the dirt pile that's now gone. I hope we get a nice side yard when they put in my neighbor's landscaping. and I really hope we get along with whoever moves in. My other neighbors are wonderful. Living by people you like is HUGE>!!
Seraph's physical therapy went well today. Her trunk muscles and leg muscles improved tons this week. She's been full of smiles this week, too.
Friday, August 21, 2009
Seraph sat on my lap and played with the music table. Delightful Finch screamed each time someone else pushed a button (changing the song). Her heart was set on dancing to the ABCs song again and again.
Angel figured if Seraph could sit on my lap, then she (Angel) could sit on my lap, too. She keeps climbing into the swing. It shakes and wobbles. Seraph loves to scoot under the swing. So far Angel hasn't fallen off the swing. I'm tired of pulling her off,...so I just buckled her into the swing. She likes to use things she sees Seraph using.
I have to feed Angel rice cereal when the Speech Therapist is feeding Seraph rice cereal. It's good for Seraph to see Angel eating, too.
Beautiful Rabbit is experimenting with my camera. We uploaded the pictures and looked through them. Then, she went out taking pictures again. The second set were better than the first set. She learns fast.
Strong Bear is being a big boy today. (no accidents - yay!!)
I've been feeling icky all day....even after my short nap. I hope Haqon's home soon - I miss him :)
Wednesday, August 19, 2009
Seraph is grumpy. She might be dehydrated. She sees her pediatrician tomorrow.
Other than that, she's doing well. Physical therapy went great today. We're practising putting her feet down when she's sitting (being held). We're also practising pushing up on her arms when she's on her tummy. She hates it, but she's getting a lot stronger.
August 28th is a big day - her heart cath. They'll look inside her heart and check pressures to see if she'll be eligible for the 3rd open heart surgery she'll need next year.
Saturday, August 15, 2009
Beautiful Rabbit, my loving sweet daughter, brought me her journal yesterday to share an entry she'd written when she was 5 or 6:
"Mom, you're not dumb...you're just grown up."
(Pictured: Beautiful Rabbit @ 5 yrs old, holding baby Strong Bear)
Tuesday, August 11, 2009
Sexy Haqon made us Sushi for dinner last night. It was our first time trying out my new sushiware. Sexy liked the bambo roller. Sushi always fills me up way too much (does that mean I pig out?)!
Sushi is one of those foods that I NEVER force my kids to eat - all the more for me!! Sadly, they all love it despite my efforts and I always have to share. Haqon even saved up his "bite" of starches which he figured was equal to 2 sushi rolls.
Monday, August 10, 2009
I'm trying this:
It lets you buy household items (non-perishable) online. Free shipping via UPS! The part I love most: they send you a reminder when you're low on something - like toilet paper or shampoo or clorox wipes.
They automatically find coupons online and apply them for you.
They sell direct from the manufacturers and make their money providing market reasearch info to those manufacturers *instead* of marking up the price of the items. So, prices are comparable to big box stores...but you don't have to buy in bulk.
My favorite brands, delivered to my door. Did I mention the free shipping?...
Anyway, I ordered a few days ago, and expect my first package to arrive on wednesday. I'll let you know how it goes.
Posted by RainSplats at 8:20 AM
Sunday, August 9, 2009
Angel's learning to drink from a straw cup. She toddled over to Seraph, took the straw cup out of her mouth, and put the straw on Seraph's lips. 'Uhhhh, uhhhhh', she insisted. Seraph did NOT open her mouth....but she did smile at the gift.
Seraph took a real bath last night :) ('til now, it's been sponge baths.) I think she liked it. Her muscles are getting stronger. She likes to be held more, to be carried around on my hip like other babies.
Strong Bear: Daddy, you can go fishing but you can't go to church - you're too big to go to church.
Mom: Oh, we should do Finch's hair.
Delightful Finch: [immediately runs out of the room!! and when I find her] No. No. Do Bear hair! No, do Angel hair! No No NO do Daddy hair!!
Beautiful Rabbit: Mom, Dad, watch! [holds Angel up high and spins around and around as Angel smiles] I think she's motion sick.
Haqon: She's not old enough to get motion sick, but she might be dizzy.
Beautiful Rabbit: [spins with Angel again]
Mom: Rabbit, put Angel down and go brush your hair for church.
[Beautiful Rabbit puts Angel down and runs for the stairs to get her brush. Angel immediately chases after her sister, giggling...only instead of getting to the stairs, she swerves left and full on crashes into the wall.]
Beautiful Rabbit: [between giggles] Yep. I think she's dizzy.
Thursday, August 6, 2009
I stumbled upon a food that everyone will eat - quiche!! Delightful Finch is in a non-eating phase. Strong Bear won't eat anything green. Beautiful Rabbit complains about anything new. Angel doesn't have any molars yet. Haqon isn't eating starches. [Seraph ate peaches today! Baby food peaches. Not as good as oatmeal. Better than applesauce.]
So here's my recipe for happy tummies:
2 cups water
2/3 cup powdered milk
2/3 scoop whey powder
5-6 tsp lemon juice
a bit of pepper
6 green olives (thinly sliced)
1-2 cups cooked Quinoa (very filling!)
1 package thawed/drained spinach
1/4 lb Feta Cheese (Ok, I really had to guess how much cheese in a lb)
bake at 375 for 30-40 minutes (it was closer to 60 before it was ready)
sprinkle cheese on top for 7 minutes (cheddar/Parmesan)
let cool. Enjoy.
I had to trick Bear into tasting a non-green part. Rabbit cleaned her plate without being prompted and asked for seconds. Finch ate every scrap. Angel finished hers and asked for more. (Then fell asleep in her chair.) Haqon even liked it :)
The best part - no one suffered from bedtime-hunger tonight. Woot!
Tuesday, August 4, 2009
This is my Family Night attempt at drawing Strong Bear. It doesn't look that much like him...but he gets a kick out of being a cartoon.
I love washable markers...and crayons..and pencils. They should all be washable. Infact, in my house they are....which is good because no matter how many times we drill, "only draw on the paper" it always looks prettier on the floor or the wall.
Posted by RainSplats at 10:49 PM
Monday, August 3, 2009
Seraph doesn't require her feeding tube or oxygen all the time. She was playing in the chair earlier but Angel got jealous. Now Angel is in the chair eating Cheerios and Seraph is jealous.
I love seeing them do real twin stuff :)
Therapy went well today. Seraph fed herself oatmeal. She didn't want to open her mouth unless she was holding the spoon.
Posted by RainSplats at 5:20 PM
Sunday, August 2, 2009
Angel discovered how to climb up and over the couch to go visit Seraph. Seraph is more awake/alert than ever. She isn't sleeping all day like she used to and gets bored when no one plays with her.
So, we removed the furniture barrier between Seraph and the rest of the kids. All the kids LOVE being all together again. Angel has been gentle with Seraph....only swiping her toys sometimes.
Seraph loves being able to see everyone all the time. The other kids go over and play with her more.
The twins like playing near each other again.
I'm a little worried about Seraph. Not super worried. It's
just that she has these crying fits. Nothing really helps calm her down. It happens mostly at night which kills sleeping time for mommy and daddy.
Mostly I just feel bad because I can't figure out how to make it better. I can't tell if it's gas (which we can vent) or leaking g-tube or teething....or withdrawl from the meds we just finished weaning.
It's probably teething (molars + eye teeth). She forgets to cry when she's distracted. Sometimes she wants to be held! She doesn't cry when we're going on walks in the stroller.
We try everying! ...and she calms down, but only for about 10 minutes. Eventually she zonks out for the night. I can't figure out what's going on.
Saturday, August 1, 2009
We love to see the temple....but it's too bright to keep our eyes open! We had a great time at the open house today. It was super hot!! Beautiful Rabbit wanted to stay forEVAH! (no surprise there)
Love you, sweet family :)