Sunday, January 31, 2010

Claire quotes

Claire says the cutest things. (I wish I could remember more of them to add to the blog right now.)

She'll ask in the mornings, "Where shall we go today?"

After we brush teeth she says, "What smells minty?"

Others...

"Can I topple on you?"

"Does Daddy have two princesses?"

"Are you happy with your daughter?"

Friday, January 29, 2010

Emily videos

Here is Emily popping packing bubbles and eating soup with a spoon.

video video




Other news:
Emily is now walking 20 or more steps on her own and walking from one room to another. Nanu showed her how to wrap up her dolly and put it to sleep and how to offer it a cup to drink. She says "night night baby" and "Baby's sleeping" and "yum yum." She will also hold the doll and rock back and forth... such a good little mama.
Claire visited the cardiologist today. He is pleased with the results of the surgery but is prescribing a course of Ibuprofen for some possible inflammation and fluid build up under the heart. He said it will probably go away on its own but he wants to see her again a couple times in the next week of two.

Tuesday, January 26, 2010

video

Got some cute footage of the girls recently.
video

This one is a big one so I better not add any more to this post.
I plan to post some more in the coming week

Saturday, January 23, 2010

running and jumping

Claire is running and jumping again. She isn't quite as exuberant and enthusiastic as she was before, but she is feeling better and better. She had nightmares last night and couldn't stay asleep. I finally at around 3:00am (After 4 or 5 wakings) put her in bed with Mark and went to sleep in her bed.

Emily stood up on her own with something in each hand and walked 7 or 8 steps. Go Emily go. Claire is very excited about Emily walking.

Thursday, January 21, 2010

Hail storm


We just experienced 4 minutes of pea sized hail. That was exciting.
Emily has her first curl at the back of her head now. She has been having fun feeding herself thick soup with a spoon... and doing about as well as Claire at it. Emily launched out on her own with one step today for the first time.

Claire is becoming more like her old self every day. Yesterday evening and today brought tears and fussing when things didn't go her way. She spat her morning Tylenol all over Nanu. She thinks of any excuse to avoid naptime, bathtime and bedtime. (She used to love the bath.

Wednesday, January 20, 2010

Emily walking


Emily has finally decided to practice walking again. She's up to 10 steps. She is also able to stand still in the middle of the room for maybe 10 seconds and is also practicing turning around to walk the other way. Pushing her car was instrumental in helping her learn this.

Claire is getting stronger all the time. She can get into her trip trap chair with just a tiny bit of support now. She helped measure ingredients for soup this morning. She didn't nap till 1:30 today and it took a while to get her to sleep. Emily got her laughing for the first time since her surgery. Claire has been a bit stoic and a lot more still.

The girls are happy with their new books. Claire has been decorating the house with reuseable fairy stickers. They look especially nice on her mirror. (Thanks Uncle Jerry and Pat. The package arrived today.) Thanks also to Gam, Grandma Bowers, Beth and Joan. It has been fun for Claire to have packages to open during this restless time.

Tuesday, January 19, 2010

24 hours at home

Claire was pretty mellow today but basically happy. She didn't seem to be in any pain. She seemed a little bit bored. She did enjoy doing some painting this afternoon.

I am totally exhausted.

Monday, January 18, 2010

home sweet home

Claire came home this evening at about 5. Thanks be to God! She is tired and mellow and slept a lot today. She smiled today for the first time since Friday. She smiled a lot today. She is able to walk around. It is good to have our family re-united. Emily is such a sweet mellow baby-- she didn't seemed to mind having so many different caregivers this week. She even slept through the night several times in spite of all the chaos. She did ask me for sissy and daddy several times--she definitely knew they were missing. She seemed quite happy to see me each time I came home-especially today. She was thrilled to see Daddy and Claire this evening too.

We are grateful for all your prayers and especially for help from Fr. Stephen, Nina, Beth and Mary, Nanu and Papa, Tiffany and Luke. Thank you.

Sunday, January 17, 2010

out of ICU

Our good friend Nina from Church called this evening for an update, and I was rambling about Claire feeling so much better with fewer wires/tubes sticking out. But then I casually let drop that she had moved out of Intensive Care and was having fun upstairs in the regular kids recovery section. Nina's joyful response reminded me what an important milestone this is, so I thought I better post.

Mark got to take a few hours rest at home this afternoon after being at the hospital for 16 hours straight. With some sleep: thankfully they have little bunk rooms for parents near the ICU. Tonight will be interesting: a foldout bed/chair in Claire's room (and a shared room at that.)

more tubes and wires gone

Today Claire had the chest tube and wires for temporary pace maker removed (apparently installing one of these for use in the first couple days after surgery is standard procedure She is waiting for a bed to become available in order to be moved from ICU to the 6th floor. Her grandparents are with her this afternoon reading and telling her stories in between naps to distract her from her discomfort and frustration. She still has an IV in her left (dominant) hand which makes it hard for her to feed herself and frustrates her.

Yesterday afternoon and evening she spent several hours on end whining fussing complaining and crying. She couldn't settle down and get to sleep even after Benadryl for an itchy face and Tylenol for a slight fever. Finally they gave her something stronger and she conked out.

Saturday, January 16, 2010

Claire doing better

Claire had the breathing tube removed this morning. Has no more sign of allergic reaction. She woke up briefly right before they took it out and held my hand as they took off the tape. She said "mama." She went right back to sleep once the tube was out.
I am relieved. It was hard waiting so long to see some reaction from Claire.

Friday, January 15, 2010

allergic reaction

Claire has had a successful surgery, thanks be to God. I was able to see her briefly and speak with the surgeon and anesthesiologist. Right now they are treating her for an anaphylactic reaction--she was allergic something used during the operation. The reaction was severe: her blood pressure dropped and she was having trouble breathing; she is swollen and red. They said it usually passes in a couple of hours and are giving meds to counteract. She will need to see an allergist to determine what caused the reaction.

6 pm update: she has recovered from the anaphylaxis, but that episode delayed removal of the breathing tube until tomorrow. She will also be sedated a little longer than normal, so she won't wake up until tomorrow. The nurses are doing a great job, and even asked me about her favorite ways of being soothed. I said the "Wheels on the Bus" song, and stories about the exploits of mice or squirrels. Though, honestly, she prefers coyote stories.

Thursday, January 14, 2010

the day before the big day


What an exhausting day. We were at the hospital from 9 to 1 this morning doing all the pre-op processing, exams, orientation, tours, etc. She was quite brave while they drew blood samples, though she did cry. I almost cried myself. Emily took a nap "in the pack" for about 30 minutes while Claire received a chest x-ray. After that, Emily was in such great spirits, she charmed the entire waiting room, pushing around an out-sized red wagon.
Part of the orientation was viewing a notebook full of pictures of previous patients, and explanations about what to expect. Basically a maze of tubes and wires, the scariest being the chest cavity drainage tubes.
No sooner had we arrived home and put the girls down for naps, then the hospital called with our schedule for tomorrow morning: check in at 8:30 for a 10:00 procedure. I'm glad we got the morning slot since that makes the "no food for 8 hours prior" a bit easier.

Monday, January 11, 2010

Home life

We resumed preschool activities with a vengeance today... this was mostly to keep Claire occupied and happy since we stayed home all day. (we are staying home in an effort to stay healthy for Friday's surgery.) It amazing what you can pack into a single day for me the highlights were quiet time and gardening. Both girls were snacking on swiss chard and both tasted some tomatoes right off the vine. They also played in the sand box and Claire helped toss out rotting oranges. It was at this point that I realized that one of the things Claire needs during these days at home is a good dose of chores to give her a sense of purpose.

Sunday, January 10, 2010

This Friday

Well, if all goes according to plans, Claire will have surgery to repair congenital heart defects on Jan 15th. Dr. Wells and attending surgeons will close one small and one large hole and repair a cleft in one of her valves.

My main concerns are:

1. There is a possibility of disturbing the body's natural pacemaker when working on the right atrium (the area they will be working on in Claire) this would result in Claire needing an artificial pacemaker.

2. Negative side effects of medications ie. nausea, vomiting, itchiness. (Claire had nausea and dry heaves after being sedated her MRI at one year.)

3. Possible allergic reactions to hospital foods. (Of course we have already listed out for them all the things she is allergic to.)

4. Infection at the incision site.

5. Other complications related to open heart surgery.

more info:
http://yourtotalhealth.ivillage.com/atrial-septal-defect.html


Please keep Claire in your prayers.

Friday, January 08, 2010

walking progress

Emily is making very slow progress with walking unassisted. Today I stood her up in front of me as far as my arms will reach and let go and she took 4 or 5 steps to me standing up nice and tall (Instead of lunging forward.) Mark and I have tried together to walk back and forth between us in the mornings but she has refused.
Her vocabulary however, is multiplying rapidly. Some new words are: "did it" as in I did it, meow, woof, peep, cat, kitty, cookie, pee pee, outside, no, yeah, that, snap, sissy

Saturday, January 02, 2010

Stand up

Today Emily practiced standing up in the middle of the room without holding onto anything. She did it over and over again while holding onto a half empty package of wipes.

Claire is a little scientist at work. She is trying to find answers to some of life's most interesting questions:
What can I see or reach if I sit or stand on the washing machine?
What will happen if I bop Emily on the head with a feather duster?
What do dried onion flakes taste like?
What does vanilla extract taste like?
What happens if you keep spinning the toilet paper dispenser?
What happens if I use the scissors on my T-shirt?
What is all this fluffy stuff in the attic? (It sure is fun to throw around.)
Why is my new calendar stapled together at the top? What happens if I take it apart?


I have to be ever vigilant... it is exhausting.

video