Tuesday, November 30, 2010

Flying McPhee?

Some Pictures from today's therapy appointment

Sitting and waiting for Odette (her PT) to arrive

Taking the opportunity to do a few warm up stretches

Building leg strength is hard work.

So is holding yourself up with your arms

But a favored toy can make a lot of activities more interesting
But not too interesting.
"Hey, after standing practice, could we try flying?"

"My suggestion is not being taken seriously."

"I said, could we try flying next?"
"Why is no one listening to me?"
She may have a killer pouty face, but she is smart enough to know when "no" is "no".

"Sitting up?"

"Oh please, I could do this in my sleep."

"Are we done here?"

After a packed therapy appointment (to get 1.5 hours worth of therapy in 50 min) we headed over to her Pediatrician's office for a shot.

I was able to share my concerns with Dr. Costello about the Sildenafil. He very sympathetically listened to me.

His solution was that I should put her back on the medicine full time and watch very carefully if it affects her negatively again. His thought was that she could have just had a breakthrough that had nothing to do with being off the medicine that just happened to line up with the week that she wasn't receiving her regular dosage.

However, if I do notice it happening again, he is going to speak to the cardiologist for us. He took me very seriously and seemed to think my opinion very important. That is how you know you have a good Pediatrician. I am so extremely thankful for ours.

Oh and yes, Chubbs passed out for several nice long hours after returning from the doctors. Nap time is one of those things that just gets better with age.(-:

Monday, November 29, 2010

frustrated with medicine....again.

Well, tomorrow was supposed to be a simple day.

A therapy appointment. Cuddling time with my daughter.

Get lots done on the house.

Until I got a reminder call from the Pediatrician's office reminding us of an appointment for tomorrow that I have absolutely no memory of making and do not have written down in any of my appointment books. (She has so many appointments, it was only a matter of time.)

Anyway, now we have Physical therapy at 9:30 and a doctor's appointment (with shots) at 10:30....cutting it a mite close.

I called to see what the doctor's appointment was for, and they said for the flu shot and for a "re-check".

"A re-check of what?" I asked, confused.

After talking to three different people, no one was really sure.

But I kept the appointment because I saw it as a golden opportunity to ask the medicine question that I blogged about last week. (Moral Dilemma)

I did call her cardiologist (I took your advice, thank you). I finally heard back from him today. Via voicemail. Pretty much he said.

"We don't care what you think. Boston and I agree- she needs to be on the full doseage of sildenafil for her Pulmonary Hypertension. Call us if you have any questions, but it will probably take us another week to get back to you."

I may have taken the liberty of paraphrasing just a tad.


I'm taking tomorrow's appointment as a sign that Dr. Costello has a different opinion for us.

Also- after fifty minutes of intense therapy and a doctor's appointment with shots....can you say

long nap for Chubbsy?????? Hoping there's an upside to our stressful morning.

Sunday, November 28, 2010

The Bear Chair


Will you be my friend?

I'll always give you a soft place to sit
and will hold you close so that you never feel alone.
and will put this smile on your face....
with love,
The Bear Chair (waiting for a cuter name...suggestions?)

Thank you, Benoits for passing this along to us! It's a huge hit with Chubbs already!

Side note: Quick reflexes have already come in handy with this chair as Chubbs tends to play skydive McPhee off of her new chair when she thinks that I'm not ready to catch her....

Saturday, November 27, 2010

Aborting a Baby because of Down Syndrome?

Lately I have been doing a lot of thinking.

Thinking about the transition from loathing the concept of having a baby with Down syndrome to being overjoyed and unbelievably happily in love with Addison exactly how she was made...extra chromosome and all.

I have been recently introduced (and addicted) to Babycenter forums (Thanks, Patti..(-: ) While nosing around, I see people proudly posting who just have received a Down syndrome prenatal diagnosis. It forced me to think back and recall things that I would rather forget.

When I was pregnant with Addison, the last thing in the world that I was doing was posting on a Down syndrome forum. I wouldn't even announce it to friends that weren't terribly close anymore. Why?

You know how they say that 1% of amnios are wrong? I was praying to be a part of that 1%. I was convinced that if I affiliated myself with DS before my baby was born, it would be like admitting to the world that something was wrong with me because I wasn't having a normal baby. It would be making the diagnosis come true.

People around me were murmuring such things as "God is judging you". And telling me over and over again how devastatingly horrible this was. No one in my circle of friends or immediate family had any experience with Down syndrome- thus leading to a myriad of stereotypes and concepts born out of ignorance that were relayed to me through pitied glances and "I'm sorrys" slathered in abundance.

I was raised in a very strict Christian home. I had always been taught that abortion was wrong. But for the first time in my life, I understood why someone would want an abortion. Yes, you understand that it is a life, but it is a life that you honestly have no idea how you are going to deal with. I felt stuck with this. I didn't want this to be part of my life. "Different" people scared me. I didn't know what to say or how to act around them. I certainly couldn't have a "different" daughter. I needed a perfect baby. I felt guilty and thought things that I couldn't even tell my closest friends or my husband.

Yes, while I was pregnant, I came to a point of acceptance. But, I still had days where I would grieve the news, and I still deep down secretly wished and prayed for the amnio to be wrong.

After Addison was born, the first thing I did was anxiously search over her features to see if she "looked" Down syndrome. As they were cleaning her up, I kept waiting for someone to yell "Hey, we made a mistake. This baby's NORMAL!"

When I visited her for the first time in the NICU, yes I loved her because she was my baby, but I still wasn't completely over the fact that she wasn't part of that 1%. She had so many health problems. The doctors had no clear answers for me. They didn't know exactly what was wrong, and they had no idea how long she would have to stay there.

Also- we discovered the DS in utero because of four cysts on the back of Addison's neck. When she was born, those cysts were gone, but her skin had grown in around them. The back of her neck was huge and baggy- with several large rolls that resembled a cross between a triple chin and floppy stomach fat.

I was so embarrassed by her neck. I didn't want anyone to notice it because to me, it made her "look" DS. She also was extremely bloated with extra fluids. Yes, she looked very, very DS. For weeks she was on CPap. I was terrified of the mask coming off because I didn't know what my baby was going to look like. I wanted a beautiful baby.

I felt like the smallest person in the world. I was doing the best I could, but I was dealing with a myriad of emotions and hormones on top of lack of sleep. I can't say that at that point I had unending love for my daughter. Sometimes the health problems looked so massively insurmountable, I thought to myself it would be easier if she didn't make it because then I wouldn't have to deal with the DS thing and all of the health problems. Recovery seemed too hard. I felt like I would never have a healthy baby.

I felt one thing with my emotions, but I knew another thing to be true in my heart. I was this baby's mother, and big neck, puffy DS look, health problems and all, it was my job to be there for her.

Every day for five weeks, I woke up, got ready and went to sit beside my baby's bedside who slept for most of the day. (Note: there are no "weekends" for a parent with a baby in NICU. Every day is exactly the same thing) I would wait for moments when she would open her eyes so that I could scan her anxiously to see if she truly "looked" DS.

I would play her music, bring her cute outfits that they wouldn't let me put on her, monitor her stat numbers and subtly jiggle down her oxygen to see if she would keep her numbers up. I learned how to work all of her machines, I changed as many diapers as the nurses would let me, I would hold her tiny hand and urge her to grab on. Whenever her eyes would flicker open, I would place a pacifer in her mouth and try to get her to suck on it. They claimed that because of her low muscle tone she couldn't eat on her own, so they wouldn't let me try. They also told me that she couldn't be moved because of her breathing issues. I was only allowed to hold her once a day- on the good days. Oftentimes I saved that one time for the evening so that my husband could hold her while he read to her.

I would go home at the end of a very long day of mostly watching a sleeping baby to an empty nursery and an empty house, because then my husband would head up to the hospital to spend a few hours with her before bed.

It was a hard, hard time. Most new mothers complain about the lack of sleep and never getting time away from their baby. I felt disconnected from my baby who was seemingly slipping away from me. Sometimes I felt like I didn't have a baby. I was responsible for the lump lying underneath all of the tubes in the isolation room of the NICU.

I think back to this time, and I wish that I had been less embarrassed. I wish I had spent less time asking the nurses if they thought she "looked" DS. I wish I hadn't deleted and hid every picture that highlighted that huge neck and puffy face. I wish I had trusted more and fretted less.

I wish I hadn't already given up on my baby while she was working so hard to stay with us.

Everyone kept telling me- "You're amazing. Wow, you're such a good mom."

I would stare blankly back and wish that it was actually true.

Alone, day after day beside a sleeping baby I didn't know what to do with and sometimes just blocking out the medical jargon because I couldn't take anymore. Is it just me, or is doctor speak one of the most confusing languages in the world?

I don't remember exactly when things started to turn around. Learning to love a new way is a slow process.

Day after day doing what I knew to be right, I began slowly to fall helplessly in love. The way she cuddled her blue little spooning buddy that they put in her bed to make her feel less alone. Seeing her pull off tubes with surprising strength and forcefully throw up her feeding tube when she just got tired of it. Watching her stare up and me and silently plead for me to please not give up on her. Seeing her small victories such as finally being able to eat 10ccs of milk on her own (take THAT- resident who yelled at me for trying) Getting off the CPap onto a nasal cannula. Seeing her numbers improve. Watching her survive her first surgery to get her G-tube placed. Seeing her graduate from the open bed, to the isolette to the crib. There were so many small milestones during those five weeks that to us were HUGE victories.

One day, when she was still in isolation, her numbers were pretty bad and on the downward slide. The doctor on call told me that they were going to intubate her and try a new medication, and as a result, she would probably be intubated for months. That is the only time that I broke down in the NICU. I sobbed and sobbed. I just didn't know how much more I could take- and I knew that the intubation would make Addison mad. The doctor obviously felt horrible, so he said that he would give her another hour to see what she would do. It's almost as if Addison was listening to my cries. During that hour, her numbers shot up. The doctor came back, looked surprised, and said that we would just forget intubation since she was doing fine.

Going through so much with Addison- surviving day after day, talking to her, working with her- I fell in love. She was working so hard just to live, I determined that it was up to me to do the rest. To take care of her, to advocate for her, to love her, to pave the way for her to do anything she sets her mind to.

I wonder if maybe God planned out for Addison to have a lot of extra health needs because He knew that I needed that to truly be the mom that Addison needs. It took me five extra weeks to come around to my new job in life....so God arranged for Addison to spend those five weeks in the NICU, fighting for her life so that I could learn to appreciate and guard it with my life.

I wish that I wasn't such an extremely selfish person. I wish that it hadn't taken me so long to realize that just because I hadn't planned on it didn't mean that it wasn't a good thing.

Honestly, if I had been raised without being taught Biblical principles and to love a sovereign God, I probably would have been part of the very high percentage of women who had aborted once they found out about the Down syndrome diagnosis.

I am ashamed to admit that. But, I do hope that my admitting that can help someone else struggling with these same thoughts.

If I had known everything then that I do now, I would have viewed the concept of my new baby having DS totally differently.

It took Addison to teach me so many things about life, about what really matters, about what love is really all about.

Love is not about perfection. It is not about beauty. It is not about feelings.

Love is about looking a decidedly Down syndrome looking baby in the eye who is attached to every conceivable machine, struggling to breathe, with an extra thick, huge neck and deciding

that she is beautiful.

that she is smart.

that she is wonderful.

that she will change your life. (and not in the bad way that you have imagined...in a really, startlingly good way)

You throw stereotypes completely out the window and realize that this is YOUR baby. No, she will not be just like every other DS baby. She is an individual.

She deserves a chance at life.

She needs to be taken care of no matter what that means.

Once you have decided this in your heart and mind, you continue on, day by day, and you feel those decisions build in your heart until they bring such a smile to your face and tears of joy to your eyes that you surprise yourself.

You are surprised that what you thought was ruining your life actually saving it. What you thought was going to destroy everything good was actually defining a whole new level of good for your life that you never dreamed possible

I know this post is impossibly long, but these thoughts have been weighing heavy on my mind this weekend. This Thanksgiving weekend.

Because I am so unendingly thankful

for my daughter

who has Down syndrome.

I am so thankful that I was protected enough not to make the greatest mistake of my life in not wanting my baby.

I am so thankful that the knowledge of the right thing to do was in my mind even when I didn't feel like doing it.

I am so thankful for the amazing spirit that my daughter has.

I am so thankful that the Lord doesn't make a single mistake.

I am so thankful that when the five weeks came to an end and I was able to take my daughter home from the hospital with a nasal cannula, an oximeter, five medications and a g-tube....I was over the moon excited and had overcome my selfish desire to give up on my baby.

I am so thankful that the Lord changed me into the mom that I needed to be.

You know, when I announced to the world that I was pregnant. Do you know what all of my friends and family said?

"Oh, congratulations! Aaron will make such a great dad!"

Yeah, I'm not kidding.

It's not until people started to find out about the DS thing that they declared me to be a "great mom" right along side the "great dad" that I was married to.

Everyone's path looks different. Don't assume that your life has to look like someone else's to be "perfect". Accept whatever hand you have been dealt and declare that to be your perfect.

even if that includes Down syndrome.

Yes, I said perfect.

If you find yourself faced with the choice of ending the life of your baby who you haven't met yet because of a diagnosis of a seeming "defect"

I urge you from the bottom of my heart, to think about your little baby as a life that is unique in a good way, to realize that this was placed in your life for a reason.

God does not make mistakes.

He chose you to have the perfect baby for you.

Just like he chose the perfect baby for me.

I am completely overwhelmed by the people that I have met since starting this whole journey that are so much more selfless and loving than I am.

People who are adopting babies with DS and willingly making it a part of their lives.

Women who had just received a prenatal diagnosis of DS and are proudly posting their news online.

I applaud you. I would have never chosen this to be a part of my life. I envy the love that you so easily have that I had to fight and struggle to realize.

But now that it is here?

I pray every day that Addison will live a long, healthy life. Because I plan on being her very best friend, every step of the way.

Down syndrome is in my life to stay.

And I couldn't be happier about it.

Friday, November 26, 2010

bring on Christmas McPhee!

Considering the lateness of the hour and the fact that I was standing in the freezing cold rain at 2:30 this morning waiting to purchase a few choice Christmas presents...this post will include very little of me ranting and raving (please keep the cheers to a minimum). I have so many things I would like to say, but these pictures will just have to speak for themselves for now.

Wanted to post these random pics before they got lost in the shuffle. Have I admitted yet that I am horrible at taking pictures? Yes, I always forget to take them- or someone else gets them on their camera and then I forget to retrieve them....These are the ones that I happened to have from today.

After the lighting ceremony downtown...trying to warm up in the mall...legs propped up true Queen of Sheba style.

Tried to get a good family shot, but sometimes it's like I just don't exist.

Yeah, this little girl has eyes only for her Daddy.
All dressed up and ready to start the Christmas season!

...with Daddy, of course. (-:
Stuffed Sausage McPhee
As hard as it is to believe by looking at her...she got cold...)-:

I hope you all had a wonderful Thanksgiving! I posted Addison's pics yesterday, so I'll spare you more of the same, but her first Thanksgiving included a long nap, eating stuffing and mashed potatoes, and being passed from person to person eliciting smiles and coos. She also started a love affair with a plastic cup which seemed to help with her teething, but was bad for anyone within ear shot when it was accidentally dropped or when I tried to finally take it away from her...

Also, my Mother-in-law got the red nail polish out of my khaki pants that I was bemoaning the loss of a couple of weeks ago due to an incident that I dramatically described in my Nail Polish post....perhaps I should have her do a guest post describing how she was able to work the magic. I was impressed, anyway.

Thursday, November 25, 2010

First Thanksgiving

I am thankful for cute striped tights that are on sale...

an adorable onesie from a dear friend...

a matching hat from a Halloween costume....

But most of all, I'm thankful for the little girl who wears all of those things so proudly this Thanksgiving day.

Her very first Thanksgiving.

I asked her what she was most thankful for

and she had so many things that came to mind that she had to think long and hard about which one she was most thankful for.

There's being alive, for one. Her family, for another. Her warm nursery was a thought. Those striped tights took some consideration (they're a little big, and she so enjoys pulling the feet off to dangle)....

But all was revealed in Baby's First Prayer:
"Please God, let there be puffs at Thanksgiving dinner. Amen."

Here she is with a Thanksgiving message for you:

Head over to Lily's Momma's blog: http://babynumber10.blogspot.com/2010/11/thankful-foryou.html to check out the compilation of blogs that she featured today. Which reminds me...

of course, I am so thankful for all of you as well! Thank you for helping this new Mom make it through almost ten months so far....

Happy Thanksgiving!

Wednesday, November 24, 2010

Pierced Ears

Typical morning lounging shot of Addison...but wait...is that a twinkle on her ear?

yes, yes looks like there has been some new accessorizing done

It makes her look so grown up

This is what always happens now when I try to take pictures of her....smart little girl (-:

So I realize that piercing your baby's ears can be somewhat of a controversial subject, but Aaron and I decided long ago that it's something that we agreed on and thought Chubbs would do OK with it.

I had told myself that I wouldn't deal with the earrings plus a nasal cannula at the same time, so that we would get it done after the oxygen was gone for good. We have been waiting to do this for months.

I've seen Addison face a lot of painful things
-a g-tube pulled mercilessly out of her stomach to replace it with a Mic-Key button after it had already started to heal around the tube
-recovering from three surgeries
-her fair share of IV insertions, blood drawn, shots

The poor little girl has scars all over her body. I figured it was about time to add a physical milestone that would be fun and sparkly.

What I didn't anticipate was how mad she got. For her last shots, her face barely even changed expression. She is used to pain.

I don't think that the piercing hurt as much as it surprised her and made her mad. She wailed and wailed. The entire mall came running to see who was torturing the baby. (the large alligator tears really killed me)

I was glad to have Kristen with me to help (by taking pics, moral support, and she was my medical opinion if Addison had any sort of bad reaction.)

Anyway, Chubbs wailed for a bit, absolutely spitting mad that we would dare put her through that.

By the time I carried her to the car, she was fast asleep exhausted from all of the effort her solo screams had taken out of her.

By the time we got home (20-30 min later). She woke up as happy as can be. She was talking and laughing and trying to scoot all over the place. The incident was totally forgotten.

She hasn't tried to touch the earrings yet either. But she seems to know that they are there and has acted somewhat older. She is full of things to say. (-:

Here we were picking out her earrings. (yes, we started out with socks on...she simply will not keep them on.)
Getting ready
We had a short chat so that she would know what to expect.

I'm not going to include the pictures of where she got so mad...no need to re-live that. Here's a pic of the comforting and the attitude that she had. She said
"I'm not very happy right now, but would like to look in that mirror again."
And this was during her short nap. I can't believe how cute they turned out.
I was so nervous to get this done, even though I have wanted it for so long. It really helps push her from the baby look into the almost one year old look.

Bring on the bling, baby.

Tuesday, November 23, 2010

Moral Dilemma

I feel like a horrible mother for even typing this post, but I have been struggling with this for a couple of weeks now and I need other opinions.

Addison is on Sildenafil (Viagra), a medication to help expand her blood vessels leading to her lungs to reduce the effects of her pulmonary hypertension.

She has been on this medication pretty much her whole life. We have faithfully filled the prescription and given it to her as told to once again...her whole life. (at $40 a bottle after insurance...this takes dedication to keep up with, believe me)

For most of her life, she has been critical- on oxygen with careful instructions to watch her breathing and stats. Now, she is no longer critical. She is off oxygen and her stats aren't even a question any more.

Her cardiologist told her that he wanted her to stay on the Sildenafil and just grow out of the dosage (which means that we're looking at continuing to give it to her another 9-12 months at the rate she is currently growing)

Here is my dilemma...and I hesitate to even share this next part.

A couple of weeks ago, when I was playing in Peter Pan and was crazy busy out of my mind...I called in her prescription refill (it takes 24 hours to fill only at one pharmacy in the state...sigh) and forgot to pick it up.

For the first time in her life, she went without the medicine at all....for a week.

I am ashamed to admit this. We have been so careful about this- including fighting pharmacists to get it on time so that she wouldn't even miss one dose.

During that week, Aaron, myself and Addison's PCA all noticed something.

Addison was more alert- she wanted to sit up- she was talking more- she was happier-she worked harder on her physical therapy-her appetite increased, she couldn't get enough of the solid foods.

I thought it was just me, but when I asked the PCA if she noticed anything weird about Addison's behavior the last few days, her observations mirrored mine exactly.

When Addison would have days of just wanting to lie in her crib and stare at her bumper pads for hours or would refuse to sit up even though I knew she could or would refuse to do certain therapy things- I blamed it on the Down syndrome.

I thought back through the last few months. She does her best sitting up/therapy work/talking/interacting with us at night- right before bed- right after her morning dose has worn off and she is about to get her night 2 ml of Sildenafil.

I am no medical professional (believe me), but my thought was that the medicine was somehow changing her personality- changing her desire to be upright. The only thing that the bottle says is - "May cause DIZZINESS" in large cap letters, just like that.

So this medicine that is helping her breathe is causing her to be miserable the rest of the time until it wears off?

I didn't even think to question the doctor's choice of the medicine. He prescribed it- we gave it to her.

As far as her breathing during the week without the medicine, it was still really great for the first half of the week and then I did notice a slight change towards the end of the week- so the medicine is still obviously helping her somewhat. Although, during the Cath, they labeled her current Pulmonary Hypertension level as mild.

How can I keep giving her a medication that is holding her back physically and emotionally? How can I keep giving it to her now knowing that it is causing her to be extremely DIZZY? She can't tell me that she is dizzy, but now as I look at her responses to different activities, especially right after she gets the medication, I know realize that she has been telling me this for MONTHS and I haven't been listening or watching.

I'm afraid to call her cardiologist and 1. admit that she went a week without the medicine and 2. ask if we can give her a smaller dose or whatever because I known what they'll say. (You don't work with a doctor for 9 months without being able to anticipate an answer like that) He is extremely conservative and afraid to change something that seems to be working (why do you think that we were on oxygen for SOOOOO long even after I knew that she didn't need it any more)

My thoughts are maybe I should just give her her dose at night and let her sleep off the dizziness but not give her any at day so that she can feel OK....but it scares me to do something differently than we were told to do.

I am Addison's advocate. What does that mean in this situation?

HELP! What would you do? Anybody else have a baby on Sildenafil?

Free Holiday Cards

This year for Christmas, I was not planning on doing a holiday card. It is just one more expense and one more busy thing on my list of things to do.

But then, when I was on Shutterfly purchasing an amazing calendar (waiting for it to come in the mail...will let you know how to turned out...so excited about it) I happened to take a little peek over into their personalized holiday greeting card section.

I was amazed. I had so much fun going through their many, many designs and producing cards with pictures that I had taken for something else.

Spoiler Alert: Check out some of the pics that I was working with:

Pictures of Addison plus Shutterfly's terrific designs are a lethal combination. Now I am SO EXCITED about the Christmas card that we're sending out this year.

I am writing up this very persuasive post because Shutterfly is giving me 50 free holiday cards and I wanted you all to know how amazing they are. Who just gives away 50 free cards for simply doing a blog post?

I also wanted to say, I'm a huge fan of their photo mugs. For some reason, coffee tastes so much better when the mug is graced with pictures of Addison...personal opinion, I know, but I feel pretty strongly about it. (-:

Check them out at Shutterfly.com. You won't be disappointed in their selection.

BTW, this is my 200th blog post. I can't believe I have actually found that much to say since March...how time flies when you're having fun.(-:

Sunday, November 21, 2010

random, random

I'm not going to lie...I've been pretty stressed and cranky lately. Chubbs has had to do the relaxing for both of us. (and you were wondering what the secret was to her great skin)

She has also acquired some new wheels which she is still unsure about...

Chubbs attended high school again this week. She was the best behaved student there. (Sometimes a mom just has to multitask)

Chubbs, like every good band director's daughter has learned to sleep through a band rehearsal...

She made this with her PCA one day while I was at school. It made me smile.

Here's to only working one day this week and hoping for some balance and sanity to return to my life......