I've Moved!

My new blog address is www.faithssecret.blogspot.com

See you there!

Hard Day at the Office

Actually, Faith wasn't at the office...she was viewing pictures that I took today of her and her little friend who also happens to have Down syndrome.


Aren't they so super sweet??


Proud Mamas


Sitting pretty


Faith trying to taste her friend, Ntina
(excuse my finger in the picture)

Wordless Wednesday

Sisters!

Happy Thanksgiving!

This year, we are most thankful for our sweet Faith...she is a light in our lives!

Wordless Wednesday

Gosh, he melts my heart!

She wasn't quite what we expected...




She's more.


Only 1 in 800 babies is born with Down syndrome.



I'm the lucky one.

Wordless Wednesday

And since I am NOT a woman of few words, I just HAVE to explain this picture. Our school district called a snow day today, even though there was no snow...just in anticipation of a big storm that has yet to hit. Anyway, we made a huge batch of cookies today...thus the picture.

Even though it was fun baking with my daughter and the cookies turned out great, there had BETTER be school tomorrow.

Sometimes the busyness of life really gets in the way. It gets in the way of a lot, actually. The house gets messy. The laundry piles up. The refrigerator becomes bare. Friendships get neglected. And the list goes on and on...

Lately, I've craved just sitting in the big, brown leather recliner--feet kicked up and arms snuggling my baby. And the great thing is, now that Faith is a 'full time nurser' there has been plenty of time for that. For that, I am eternally grateful. Babyhood is so fleeting, it's something to savor. Savor indeed. The sweetness of a baby just can't be beat.

It's still hard for me to believe that my oldest child is 13. A teenager. Officially. Where did his babyhood go? Did I drink in his sweet baby smell and his chubby baby legs? Did I take the time to enjoy his toothless grin and his silky soft hair? Did I hold tight to his hand in mine? I hope so...I hope I didn't let life get in the way. Now, although I look almost eye to eye into my son's face, I still see that sweet baby. He's still in there, somewhere.

Since Faith's birth, I have tried to focus on more of the positive. She's smaller than a 'typical' baby of almost 5 months old. In fact, people that I run into in public that ask how old she is, can hardly believe that she is not younger than she is. I just smile and think to myself "at least I get to enjoy her babyhood that much longer"...and when I worry about how floppy her muscles are, I say to myself "at least I can enjoy cuddling with her as her body just melts into mine"--a perfect fit.

It's hard to believe how this tiny little girl has changed my perspective on life. On love. On acceptance.

Now, onward we go. Adventure ahead. A Princess with 47 chromosomes was born into our lives. And with her 'something extra', hearts and lives are changed.

I am so very thankful for this eye-opening child that has been gifted to us. She is a treasure. Complete in a pretty package, wrapped in a shiny bow...waiting to be unwrapped. As we all know, big things can come in small packages!

Love Struck

I know, it's been MONTHS since I've updated my blog. I have a lot of things to blame it on. Hospitalizations. Summer. Six kids. Insanity. And oh, did I mention six kids?

I am trying to get back into the swing of things now that the kids are back in school, and blogging is one of those things that I am trying to catch up on.

Please don't throw rotten fruit at me. I'm doing my best.

Since I titled this entry "Love Struck", let me just tell you why I chose that. Over these last couple of months, as the shock of Faith's "diagnosis" has worn off and I have had more time to enjoy her, I have become *totally* love struck with her! She is a JOY to behold. A complete and utter ray of sunshine! I love everything about her. From the top of her tiny head to the tips of her teeny toes, she has captured my heart and I am completely in love with her. In fact, I love her so much, my heart could burst!

Thankfully, my severe and agonizing post-partum depression has been treated successfully, albeit with a lot of medication. Medication that my doctor plans to keep me on for at least a year. And you know, I am *totally* okay with that. Heck, I'll stay on the medication forever if I need to. I can't imagine sinking into that black hole of despair EVER again. It was horrible, to say the least. I really had no clue that a person could feel SO bad--especially after just having given birth to a beautiful baby.

Stupid hormones!

Anyway,Faith is now 4 months old and is doing wonderfully. She is having physical therapy once a week and early intervention twice a month. So far, she is meeting all her milestones, although she is struggling with low muscle tone in her upper body--still having some trouble with head control at times.

Here we go! Faith, you are 4 months old! What have you been up to?


* You are nursing now--no more bottles!

* You weigh 11 pounds and 10 ounces

* You are 24" long

* You are wearing a tight size one diaper

* You are wearing 3-6 months clothing (it's a bit big yet)

* You are rolling from your tummy to your back and sometimes from back to tummy

* You LOVE to lay under your baby gym and bat at the toys

* You sleep ALL night long!

* You are a very happy and content baby--a smile is never far from your face


Someone said to me the other day that Faith was lucky to be born into our family. Truth be told, WE are the lucky ones! I am so thankful that we were chosen to be Faith's family and I am thankful that she is here with 47 chromosomes.

Gosh, I love this little girl!

2 Months Old!

FAITH-YOU ARE 2 MONTHS OLD!!

What are you up to these days???

* You still sleep A LOT.

* You are smiling at me!

* You are eating 3 ounces every 3 hours and are showing interest in nursing--finally!

* You weigh 9lbs 8oz.

* You are 22.5" long.

* You wear a size 1 diaper and it's huge on you!

* Your eyes are a beautiful blue...I love to see them open :)

* You love to be held and rocked.

* You are Mama's little girl--as you should be!

We had a visit to the pediatrician today. I had some concerns that Faith may have reflux (turns out she does) so the doc started her on Zantac. I also mentioned that sometimes she gets a bit 'dusky' around her mouth. Doc checked her oxygen level and it read in the 80's (between 84%-88%) and it should be above 90%. So, an overnight oximetry study is ordered as well as a swallow study to make sure Faith isn't aspirating. My heart is worried about all this stuff, but I know she is in good hands. The hands of our Father!

I am SO in love with this little girl :)

BIG NEWS!!!

I can't believe she lost her first tooth. Unfortunately, she really lost her tooth after she lost her tooth--if that makes any sense at all. Apparently dancing around in the street holding your tooth is not good--so, in lieu of the actual tooth under her pillow tonight, she wrote the Toothfairy a note explaining that she misplaced her tooth and begging her to still leave money.

Let's hope the Toothfairy comes through.

And the Fun Has *Just* Begun...

It's here. Summer vacation. Or should I call it the lazy days of fighting, whining and complaining?

Sorry folks, it is what it is. I am not a fan of summer vacation. I try to be, but really, I just can't...it isn't natural for me! I love school that much. Yes, I do.

So as not to trivialize all that is going on in my world, I will just be blatently honest with you. I am not doing all that well. I am severly depressed. Majorly messed up--some in the head, but mostly in my heart.

I have guilt. Over what? Over feeling like I am grieving. I am grieving. I don't like it. Not one bit. As one misunderstood person told my husband..."she just needs to get over it". Easier said than done. And nobody is walking in my shoes.

I am grieving the loss of the child I expected...but I truly love the child I've been given. It's just a big, and frankly, scary new world I've been thown into. The world of Down syndrome is frightening to me. I also grieve the loss of a nursing relationship with my daughter. It just isn't happening. Yet. Maybe it never will and I don't know if I can be okay with that.

But, I'm not giving up. Yet.

I'm not thrilled about summer. I am not ready to face an entire brood of children while still trying to work out the kinks in my heart. Honesty, again. It isn't always pretty, is it? I'd like to just go to bed and wake up in August.

Zoloft, here I come!

The Sweetness of Life

"In the name, the precious name
of Him who died for me,
I will fight to win a promised crown
Whatever my cross may be."

Faith may be all smiles today, but I am not...my heart is heavy and burdened. I am torn. Confused. Disappointed.

Thank you for your smiles Faith...they are just what your Mama needs!

Lord, come quickly.

Happy One Month Birthday, Faith!

Time sure does fly...

Got Milk?

As tired as I am of doctor's offices, I find myself almost looking forward to Faith's weekly visits to the pediatrician's office for her weight check.

Almost.

I still get a sick feeling in the pit of my stomach, stemming from worry and the what-ifs...

That being said, ahem, today Faith showed a gain of EIGHT ounces since her last weigh in a week ago! I just about whooped it up right in front of the scale, but I did my best to retain my composure--and I didn't yelp with delight. Funny how excited I was over those 8 ounces! It *is* exciting though...and it made me proud. I look at my daughter's newly rounded toosh and her plumped up arms, legs and cheeks and I think to myself "I did that!"--I feel almost accomplished in the fact that she is thriving on my milk, even though she's getting it in a bottle.

So, the verdict today was 7lbs 10.5oz--up from 7lbs 2oz last week. And the doctor doesn't need to weigh her again for 2 weeks this time!

Mama's milk...does a baby good, no matter how it's delivered!

If You Can't Change Your Life...

Change your hair!

I decided that I'd had enough of my drab,dark-rooted hair and I wanted to treat myself to a change. Highlights and a haircut can do wonders for a girl! I don't think anything can be done about the tired-mom-of-a-newborn-bags under my eyes, but oh well, my hair looks good :)

Speaking of being tired, I am really becoming weary of pumping milk. I've been going strong 24 hours a day for the last month and it is growing old quickly. Especially at midnight, 2am and 4am.

However, I am still holding out hope that Faith will nurse sometime soon, so I will keep up the arduous task of pumping around the clock so that I can be ready when she is.

I am learning more and more, day by day, about Down Syndrome. It scares me. It worries me. It makes my heart palpitate with anxiety.

But, more importantly, I am learning more and more just how precious Faith is. I don't look at her as 'my baby with Down Syndrome'--I just look at her as my sweet baby.

I see her through God's eyes. Just as she is.

Period.

Just for Cuteness Sake

She's finally tipping the scales at a whole 7lbs 2 oz...go Faith! You're headed in the right direction :)

From the Heart

Cardiologists make me nervous.

Thankfully, they don't seem to have that effect on Faith...


Having an EKG--being swallowed up by all the leads!


Okay, maybe she's a teeny bit nervous here having her blood pressure taken...

After 3 l.o.n.g. hours in the pediatric cardiology office, Faith was given a diagnosis of having a Patent Foramen Ovale. A patent foramen ovale (PFO) is a defect in the septum (wall) between the two upper (atrial) chambers of the heart. Specifically, the defect is an incomplete closure of the atrial septum that results in the creation of a flap or a valve-like opening in the atrial septal wall.

Long story short, it may or may not close up on it's own--Faith will be further monitored to determine what, if anything needs to happen as far as intervention/treatment. But, what she doesn't have is any of the major heart defects that afflict upwards of 50% of babies with Down Syndrome. (WHEW!!) We are thankful she is in the *other* 50%.

I am slowly adjusting to the reality that my child has Down Syndrome and all that will mean to her, and to us as a family. Someone at MOPS this past week told me that *I* was the one that was special...because God thought it appropriate to send me such an angel :)

And the Journey Began...

I was elated at the birth of Faith. Her birth was pretty easy all things considering. Painful yes, but over so fast I didn't have much time to think about the pain.

My arms instinctively reached down to pull my newborn to my chest the moment she was born. My wonderful OB made no hesitation in obliging my desire, and allowed me to gather my baby up in my trembling arms immediately. I heard the doctor giving my husband instructions in how to cut the umbilical cord. I drank in my beautiful little baby girl's sweet spirit and then handed her over to the nurse practitioner to place her in the warmer.



Across the room, I heard her strong and beautiful cries floating through the air. Sweet, sweet music to my ears. All was right in my world. My baby girl was here.




The Nurse Practitioner swaddles my baby up tightly in a pink and blue striped hospital blanket and walks over to my bed. "I need to talk to you about your baby" she says. "I am seeing signs that she has Down Syndrome". I hear myself audibly gasp, my heartbeat quickening. She begins to point out the 'characteristics' of Down Syndrome that she sees in my baby. Almond shaped eyes. A wide space between her first and second toes. Small ears. Deep creases on both palms.





"What?" I cry. "I am not that old, how could that happen?" I didn't really hear what was being said. Shock took over my senses, I think. I look at my baby first. She looks perfect to me. But, when I look up through my tear-rimmed eyes in an almost foggy room, I see the concerned faces of 2 nurses, my OB, my Mom, my husband and my friend, Teri. "Is my baby going to die"? I ask, not really wanting to hear the answer. "No sweetie. Your baby looks healthy" explains the Nurse Practitioner. "But, we need to take her to the nursery to make sure she's okay".

I am numb.

I hear someone begin to sob. Heart wrenching sobs. And then I realize I am the one sobbing. I kiss my baby, feeling like she is a stranger, and tell her that I love her. Always and forever. No matter what. And I do love her...so much it hurts.

And here in birthing room 40, begins a whirlwind of emotions. Scary and painful emotions. I am flooded with grief even though I don't quite yet understand why...

Introducing...

Faith Journey Newcomb
Born: Thursday April 16, 2009
Time: 10:15pm
Weight: 6lbs 7 oz
Length: 19"

During my 38 week OB visit, my blood pressure had shot up to 170/100 so I was sent directly to the Birth Center to have labor induced. 2 doses of Cytotec and 30 minutes of Pitocin later, I went from 3 cms dilated to Faith's birth in less than 10 minutes! One big push and out she came with her elbow next to her head. (ouch!)

Definitely my easiest labor and delivery. And yes, my last labor and delivery too.

Faith is a beautiful baby girl. She also happens to have Down Syndrome. A big surprise, but even at just a mere 2 weeks old, she is already the light of our lives.

I have been wanting to blog before now, but I suppose I just wasn't ready. My emotions run high and my energy runs low as I am on a very hectic schedule of pumping milk every two hours for Faith as she is unable to nurse just yet. She has what's called Hypotonia (low muscle tone)due to her DS (Down Syndrome). I, along with her team of doctors and specialists, are hopeful that she will be able to nurse in the upcoming months as she grows stronger and isn't so sleepy. I cling to that hope each day as my heart just aches to have that relationship with my baby girl.

I will try and post more often, but my free time is sparse these days. Bear with me as we travel down this new and honestly, scary road.

In the mean time, enjoy these pics of my baby girl!