Thursday, September 30, 2010

I had a dream

I dreamed last night that we got to Boston and they changed their minds and said that Addison didn't need heart surgery.

It was a lovely dream. Luxuriously surprising.

I was awakened by Addison's hungry cry. She had unhooked her "breakaway" cannula in the middle of the night and most likely wasn't getting any oxygen most of the night. I saw her work so hard to breathe, and the dream was over. Sigh.

Sometimes it's easy to recognize that God is good. Sometimes it is easy to proclaim how good life is. Sometimes you just want to cry and curse (for perhaps the first time in your life) and it takes every ounce of self control to realize that God is still good even though you aren't feeling it. You just know and have to blindly believe.

Sometimes it is easy to be a stoically strong person. Sometimes the only thing that makes sense is a pity party because you know that you will feel so extremely guilty for giving in to the emotions that you will become strong again. Sometimes procuring silent tears is the only way to express exactly what you are feeling.

So many people keep asking me if I am ready for next week.

Ready to have my daughter operated on for the third time in her very short life? Ready to hand her over to more medical professionals, trusting people I don't even know with her fragile life? Ready to know that for a short amount of time, she will be kept alive only by machines? Ready to see her cry and be frustrated when she wakes up from the surgery feeling so much pain and being strapped down? Ready to see her struggle and not be able to cuddle her? Ready to go through all of this again with the strong realization that we could still leave with the same amount of oxygen requirements that we have now?

Who is ever ready for that?

No, I'm not ready.

I am ready to get it over with. I am ready to put this all behind us. I am ready to start putting vitamin E on yet another scar that continuously reminds me that my daughter's life is a miracle. I am ready to just continuing to be a Mom. Addison's Mom.

Today's just one of those days. You know, a hard day. A day that makes you question life itself.

But it's OK, because the pity party is over and the guilt is setting in as a result of the weakness.

But, more importantly, it's OK because God is good.

Tuesday, September 28, 2010

Surgery Details

Surgery Plan for Next week:

10/4
We are supposed to arrive at the Children's Hospital on Monday, Oct 4 early in the morning to start a day full of testing (insurance verification, blood work, chest X-ray, electrocardiogram and echocardiogram, also meeting with countless doctors, nurses, anesthesiologist, and her surgeon)

10/5
4-6 hours of waiting for the Cath while they do a "workup"
Then they will do the heart Cath. I found out today when I finally was able to track down a nurse on the case that there is a small chance that they can close her ASD in the Cath lab. This isn't likely because of her small size and this will depend on how high her pressures are, but they aren't ruling this out completely yet. (YAY) We will probably know better after her tests on the 4th, but for sure after the Cath is completed on the 5th.
During the Cath they will also be testing the effect of different types of drugs on her hypertension to see if they can help her better with a different medication after the surgery.

10/6
She will be discharged from the Cath and the pre op work will begin at 11:00am. This apparently takes the rest of the day.

10/7
Surgery is scheduled (last time we had to be there at the break of dawn for a 10:00 surgery. This whole process involves a lot of waiting)
The surgery's purpose is to close her ASD. This time they will have to go in through the chest and she will need to go on a heart/lung machine for the duration of the surgery. She will also need a breathing tube which they anticipate that she will need for at least 12 hours following the surgery as well. They are anticipating about 5 days recovery. While she is there, we will meet with the Pulmonary Hypertension team to discuss where to go from here. Hopefully this will erase her need for oxygen.

Deviating from the List

I had big plans for today. Big plans to take care of the disaster I call my house. Today was the first day in a long while that I was home all day with no appointments and I intended to make full use of it. (Being somewhat of a homebody, days like this haven't happened enough lately in my opinion)

I started the day off well, making a simple centerpiece with pumpkins from my garden and leaves from my yard. I felt that if my table boasted a darling centerpiece, it would inspire me to bring the rest of the house up to its level of greatness.Yeah, that didn't work so well. I didn't get my list of household tasks done. I completely let down my centerpiece.

What did I do all day?
I spent some quality time relishing my Pumpkin Spice coffee while watching Chubbs play.
I stubbed my toe pretty badly and trailed blood through most of the house before I realized the mess I had made.
I did countless loads of laundry (yes, I can count to 5, but countless sounds better).
At the last minute, I got to meet my friend's brand new baby and snuggle with him for a bit (what a sweetheart!).
I tried a new gluten free apple "crisp" recipe with maple syrup and almonds (wow, it was yummy).
I took a nap with Chubbs, and I let her finish her nap on my shoulder when she was crying out with some rough dreams.
I spent time working with Chubbs to get her to sit up (she is doing awesome).
I spent hours tracking down the nurse of the nurse of the doctor of the surgeon in Boston to get more info on Addison's surgery (post to follow).
I prepped dinner to be finished when Aaron arrives home shortly (beef, onion and mushroom sauteed with a little butter and onion soup mix over rice....simple, but good)

And that pretty much brings us to now. Hmmm, the house is still a disaster.

I am convinced that you have those days where your list falls by the wayside....but it doesn't make that day any less profitable. I think when Addison is recovering in the hospital after surgery, it is days like today that I will remember fondly to help me get through. Unhurried, precious time snuggling, sleeping, and just hanging out. Good day.

Monday, September 27, 2010

Sunday, September 26, 2010

A message to Past Deanna

September 24th, 2009.

That is the day that forever changed my life. I thought that it meant that my life was over.

September 24th, 2009 I spent in absolute turmoil, utter devastation, and inconsolable tears.

I think this time of year I will always remember. I will remember the depressing phone call from the genetics counselor. I will remember seeing my husband cry for the first time. I will remember resenting my baby. I will remember wishing that my baby would die.

How much one year can change.

I looked in my planner from last year to make sure that I had the date right, and I found a list of Pros and Cons that I had written out when I was struggling through this. I won't share the whole thing, but here is a sample of what was going through my head:

Pro / Con
Makes us stronger / Everyone else is having a normal baby
God is creating her perfect in His sight / Could be severely mentally retarded
Brings us closer to God / Won't look like us

and so on.

I look back at that list now. I recall all of the memories that I have of last year on the anniversay of hearing the news that
"I am so sorry. Your baby has Trisomy 21. She has Down Syndrome."

I wish present Deanna could go back and comfort past Deanna. I wish I could tell her not to cry. I would tell her:

"It's OK. You have no idea how wonderful this is going to be. You are going to love this baby so much that it isn't going to matter to you that she has an extra chromosome.

Yes, this is a different path than everyone else- a path less trodden, but it is the only path that will give you your perfect daughter in all of her glory.

What do you mean she won't look like you? If you compare her baby pictures to yours- you would think it was the same baby.

As far as the mental retardation, it is just a medical term that happens to be attached to this label of Down Syndrome which honestly hides a lot of beauty.

I just went to check on the sleeping princess, and I have to tell you- you have so much joy in your future. I know that it seems like you will never be happy again. But I am here to tell you, that this little girl that you are resenting so much right now is about to make you happier and more content than you have ever been before in your life.

She is a miracle baby. She will slowly wrap her chubby self around your heart and become an integral part of your life. You will find that you can't imagine a life without her. Without the Down Syndrome. You won't be able to imagine yourself down a different path because you love the one you are down. Dry those tears. Don't be silly! Embrace this new path and look forward to meeting your daughter, because I am here to tell you- she is so awesome. You are blessed to have been chosen for this.

Don't be jealous of those other Moms having "normal" babies. Having met Addison myself, I couldn't imagine trading her for one of those normal babies, because she is the perfect baby. She is the perfect baby for you."




Today Aaron and I went to the Vermont Youth Orchestra Concert. Last year, I cried through most of it thinking that my daughter would never be able to do something like that.

This year, I eagerly pictured her as a violinist (or maybe cello), and I could imagine her up on stage playing her instrument. I could imagine that it was her that everyone was clapping for. I could see her cute self hiding behind her instrument, ready to get on with the show and impatient that we have to take time for clapping. I could see her stealing the show in some way unique only to her. I could see her soloing with the orchestra and loving to make music.

Addison is amazing. There's no holding her back.

How much one year changes.

(I wonder what future Deanna wishes that she could come tell me now?)

Saturday, September 25, 2010

books, bumboless sitting, blowouts

Addison loves books...

...they are delicious....

"Wait, did you see me do that? How embarrassing."

This morning she fell asleep on her ball and had an imprint of a circle on her face for about an hour....I tried to remove the ball from her grasp and get her in a more comfortable position, but she would have none of it as she clung to the ball with a death grip with her face squished right up next to it....

Ready for this? Drumroll, please.
For the very first time, we got a semblance of Addison sitting up without us supporting her in some way. This is not a great picture, as I didn't want to hands to be distracted with the camera for too long so that I could be prepared for the dive that was soon to follow each sit up endeavor. She did sit up straighter than this.....I sat there clapping and telling her how proud of her I was and she just kept smiling back at me. She seemed pretty pleased with herself.

Until she decided that she had had enough. I would see this face and then the downward descent would begin. (don't worry, there were no accidents in today's therapy exercises)


What can I say? This girl plays hard.

Hmmmmm, I didn't realize this outfit had a belt....
HAHAHAHA. The best part about this picture is- I was heading out the door to a performance when it occurred, so Aaron had to handle it solo. I heard reports of green bean poop smooshed all over everything as he undressed her and then gave her her bath. What a great Daddy! (ironically enough, the onesie says "I love Daddy")LOL
This just makes me laugh. First time this has happened as well! A day for firsts! She waited until she was in white to do this. She likes dramatic statements.

Wednesday, September 22, 2010

I think we have a Daddy's girl...

Proof that Addison is a Daddy's girl

1. How willingly she wears the outfits that Daddy daycare requires of her...

2. How adoringly she looks at her Daddy...

3. How even horrible things like sit ups are now made fun....
video

Tuesday, September 21, 2010

Leg Warmers

Chubbs got her first pair of leg warmers today (in preparation for her upcoming surgery)....(thanks to Amy!) Of course, even though I only had a short hour between work and rehearsal, I had to get a few shots of Chubbs styling them. How could I manage this? Because I came home to find that the PCA had cleaned my house, done Chubbs' laundry and hung a painting that Chubbs had done on the fridge. I was able to spend the hour just being with Chubbs. So thankful for a wonderful PCA!

So here we go......I think she pulls them off...what do you think?


"Ok, can you see the legwarmer if I put my leg out like this?"
"I feel strangely gift wrapped...oh well, whoever upwraps this diaper must have been on Santa's naughty list...hehe"

"Watch for my downbeat"


(raspberry)


"Huh, so that's my foot..."

"Puff break! It's time for a puff break!"
Love this little girl. It was a hard day thinking of the upcoming surgery. In one sense, I'm kind of glad we don't have a lot of time to sit and freak out about it.....

Monday, September 20, 2010

Heart Surgery #2

I started the day stressed. Tired from the very busy weekend, and stressed. I was supposed to run into work this morning to help out another teacher with his class, but Addison's PCA canceled on the extra day at the last minute so then I had to cancel last minute on my coworker. I hate doing that. Also thinking about how this entire week is taken up with musical practices and performances was just getting me down a little bit (even though I love doing it, I hate being away from Chubbs so much)

Then, Chubbs was just kind of in rare form today- fussy and needing lots of attention. I didn't mind the extra cuddling, but when I would put her down to try to get something done, I would hear pathetic sobs and large alligator tears would instantly appear.

Just as she was rocking out some green beans and I was envisioning stopping at Dunkin' Donuts to get a pumpkin spice coffee on the way to Addison's doctor's appointment and thinking that perhaps today wasn't so bad, my phone rang.

I saw the 617 (Boston) area code and knew immediately what the call was for. Yep, it was Children's Hospital scheduling Addison's heart surgery. But, unlike last time when they gave me a couple of different weeks as options, they gave me only one option- in two weeks. All of the testing will start on the 4th. Only problem is (not to mention how last minute this is), I still have three performance of the musical that I am playing left that I would miss. How do I do that????? I am pretty stressed and still not sure what to do about it. I asked if we could do another week, but the receptionist said that if we passed this slot up, the next one wasn't until November and Addison's chart read that we were to do this ASAP. It's bad enough to think about facing another heart surgery with your daughter. When you then have to deal with guilt on letting down an entire musical cast on top of that- it is just cruel. So, still not sure how I am going to gracefully handle this.

I'm headed off to dress rehearsal in a few minutes. I'm hoping inspiration will strike me on the way there....

Sunday, September 19, 2010

encouraged

Right before I put Chubbs down in her crib tonight, I gave her an extra long hold/squeeze. Her chubby legs dangled in front of me and her little arms wrapped around me. Her face fit perfectly in the crook of my neck, and we had a moment of just holding. It occurred to me that this weekend has been so incredibly busy, I haven't had a chance to really hold my daughter. I hate that. I am so looking forward to more time with her tomorrow (although that includes a hearing test...yikes)

So, after my discouragement on yesterday's post, I have to share how encouraged I was at tonight's party at my friend Sarah's house. I met some new friends, one of which is a very nice special ed teacher here in my district. I asked her if she worked with any kids with Down Syndrome and her face lit up as she got all excited and replied that yes, she did. This little girl's name is Bella and is in second grade. The special ed teacher went on to explain her in glowing terms- very social, so stinkin' adorable she wants to just take her home with her each night, loves to read (and reads better than some of the other kids her age), and is very nurturing to the other kids. I was so excited to hear that this little girl was doing so well and was so on track with her peers.

I then turned to the other side to talk to Sarah who teaches at a different high school. She told me that last week at homecoming- the girl who was voted homecoming queen had Down Syndrome. She said as she watched the girl go forward to be crowned homecoming queen, she could totally imagine that as Addison some day and she got a little bit choked up. Just hearing her tell the story made me want to cry.

Both of these stories were so encouraging to me I wanted to share them to counter any negativity I may have expressed on yesterday's post. (-: It may be the littlest things that drag me down, but it only takes small stories such as these to bring me back up again in a heart beat.

Friday, September 17, 2010

"Baby it's (getting) Cold Outside"

I had a long chat with Addison today. Since she spent most of last winter in the NICU, she really has yet to experience a true Vermont winter. I tried to prepare her for what is ahead as it now seems to get colder and colder every day. Yes, there will be fun times of skiing and sledding, but also some very cold times. I was surprised by her response.

I guess she really is a true Vermonter.

(shout out to Grandma Smith for the awesome new boots)

Thursday, September 16, 2010

Addison:budding model diva

Confession: I love to take pictures of my daughter. (if you couldn't already tell)

Each photo shoot begins the same way:

some jumping...

...some smiling and arm flapping...


...some sitting...

....and without fail, each photo shoot always ends the same way....

...with Addison showing off....
haha. Love her!

Wednesday, September 15, 2010

Puff Princess

When I came home from work today, I found Addison sitting in her bumbo seat next to an open container of Sweet Potato puffs. After the PCA left, I started to take Addison out of the bumbo because she had been in it for close to an hour, and she normally is not a fan. She started crying when I tried to move her. She wanted to be in the bumbo. OK, I was fine with that. I left her there and went into the next room.

I hear crying so I thought maybe she was hungry. I got her a bottle. That made her cry harder. I got her some prune juice. Alligator tears started to appear. I couldn't figure out what she wanted until I remembered the open container of puffs.

I gave her a puff and she almost jumped out of the bumbo seat with excitement. She chomped and chomped while moving her jaw up and down with great delight. She was happy. She smiled. She clapped her hands.

30 seconds later, the puff was gone. You would think the biggest tragedy had just occurred. Screaming. Tears. Frantic waving of the hands...until a puff was put in her mouth again. It was so weird. She probably ate most of the container of puffs just since I have been home. Her nutritionalist said that they weren't really good for her/weren't really bad for her, so I didn't see a need to cut her off from the puffs. She has only stopped now because she is now thirsty and downing a bottle.

I tried to capture the spirit of the last three hours (yes, she has done this non stop for the last three hours) with my phone camera (sorry for the horrible quality...my other camera is out of batteries...)
"May I please have a puff?"

"You're clearly not moving fast enough, so I'm just going to help you..."

"Mmmmmmmmm"

"So GOOD!"

"Ah, this is the life...lounging and being hand fed puffs...."

"More please"

(hundreds of puffs later)
"I said MORE PLEASE."

"I don't understand why the puffs just stopped coming."

"WAITER!"
(after the demanded puff makes its appearance)
"Now we're talking..."

...and then we start all over again...hahaha...

Always unpredictable....that's my daughter! I guess we'll be buying more puffs tomorrow....not sure how long this obsession will last.

Tuesday, September 14, 2010

Representing Therapy through Pictures

Addison's Physical Therapist, Odette, comes once a week. We work on all manner of things.

This is a pictorial journey through today's therapy session.....

I am sitting on the other side of her, so this is often the view I see:

"Hmmmm, she just wants me to sit up, but wait 'til she finds out I can count, too."

"I can't decide which is more work- sitting up or looking cute"

"Yeah, I'd say...sitting up is harder work...definitely."

"Who is this making me work so hard, anyway? Oh, Hi, Odette."

Apparently Addison was sniffing something before therapy to help her get through....

"I like the crawling thing better than the sitting thing...this actually takes me places."

"Hi, mom."

trying to get away....(love Odette's expression here)

"Standing- so much work, but so much fun!"

"Oh, mom, you're still here?"

After therapy session, I'm sure this is what Addison thinks:
"All right Odette, you know I love you, but I just don't like you right now. You understand, right?"