Oh My Aching Heart

I just heard the news about sweet Carly. A special life taken far too early. My heart just aches for her family. I can't even begin to imagine their pain. I have been reading the various blogs, tears streaming down my face, trying to find an answer. Earlier this week my cousin lost his first child, a beautiful son, born at 28- weeks. It's so hard to understand sometimes why these things happen. My heart aches for them too.

As I have been reading tonight the common theme I hear is the fragility of our special babes with Ds. I cried as I read about and thought about how fragile their little lives can be. But then my chest grows tight, my eyes dry up, the hair raises on the back of my neck and I think to myself, NO! Chloe is NOT fragile. I cannot think of HER as fragile. Maybe she is, in the scheme of things, but I can't think of her that way. She is my fighter. She is my strength. If SHE's fragile, what does that make me? I have already crept in her room tonight and whispered a special good night. I will worry about every cough, every sniffle, every little thing that doesn't look right, just like I always do. But I refuse to look at her and see her as fragile. I just can't.

HUGS to all my blog friends out there who are reeling in pain and their own fears with the loss of one of our own. LOVE and thoughts and prayers to Carly's family and friends. And special thanks to all of you out there who provide me and Chloe with the strength we need each and every day.

AMAZING BREAK-THROUGH!!!!

So, yesterday Chloe took 26 ounces of her toddler formula by bottle!!!!! Her daily goal is 27 ounces so she was only 1 ounce short and got to skip the whole day AND NIGHT of tube feeds!!!!! This is the first time since she was only a few weeks old that she got to go a whole day without tube feeds! Today she took 19 ounces! I'm so proud of my big girl. She's also starting to cruise around furniture. You go girl! I will post pictures soon - camera is broken so I'm using my old one and the hook up is ALL THE WAY downstairs ;) I know, I should stop being so lazy. haa haa

On another note, we closed on a new house this past Thursday. It's an amazing AMAZING opportunity for me and my family. We bought this beautiful old house in this adorably quaint little New England town with my mother. It has a cute little cottage for my mom and a nice big main house that we can share space in, including a roomy guest suite for my family and friends to come and visit - that's you blog friends!!! (and a place for my brothers to "come home to" from graduate school). I feel so lucky. We need my mom and since losing her husband I think she really needs us too. We can be there for each other and that is wonderful. It's a BIG renovation project, so we won't likely be in for 3 or so months! I'll post pictures soon.

A Special Tribute

Today is a difficult day. For it is the anniversary of the birth of my step-father, who died suddenly 6 months ago. I thought it was the perfect day to honor him. He was a very special man and who always had my and his other children's best interests at heart. Big Sam, also known as Bah-Pah and Grandpa, was a man who loved his wife, his children and his grandchildren VERY much. He spent countless hours with my own kids establishing a bond with them that will carry with them throughout their lives. He was a generous caring man with a wonderful sense of humor. He always loved to make us laugh. I know many MANY lives were touched by him and were effected by his loss. My thoughts are with everyone who feels the pain of his absense, today especially, on his birthday. I love you and miss you big guy and celebrate your memory.

Happy Easter!!!

Aside from my husband cutting off the tip of the bone in his finger, we've had a very nice weekend! Visits from cousins and some nice weather made for a great time. Here are some pics! :

Zach here from North Dakota

Sadie ready for Easter brunch



Handsome Xander

Xander with the Easter Bunny.

Chloe enjoying her brunch!

Sadie after the Easter Egg Hunt

Chloe

Peter with the kids at the beach.

Nana with the girls at the beach.

Where's Chloe???

Here are a couple of videos of Chloe playing peek-a-boo. Remember to scroll to the bottom to pause the music so you can hear the videos. Enjoy. :)

My First attempt at getting Chloe to play peek-a-boo


Chloe Plays Peek-a-boo

Blankies for Babes

Chloe snuggled up in her Blankies for Babes blanket when she was sick. It's like a hug from Jax and his mom Lacey everytime she cuddles up in it! It was especially nice to have when Chloe was sick. Please check out the Blankies for Babes blog and sign up to follow to hear about the special kids that are touched by this wonderful project - kids with special health care needs just like Chloe.

Our Beautiful Girl

Not feeling great:


But not bad enough to keep away one of those smiles!

A LONG Week

Well, looks like Chloe did have an ear infection because after about 36 hours on the antibiotic her fever broke. Unfortunately that wasn't the only answer to her whoa's. She's also had a nasty GI virus! And I mean NASTY. She's finally (FINALLY!) perking up since Friday, although she's now covered with a fine red rash! It just doesn't seem to end. I am, however, extremely thankful for her g-tube because we were able to keep her hydrated even though she wasn't taking ANYTHING by mouth and was vomiting with diarrhea for 5 days. She would have surely been hospitalized without it. She has been a sick little girl. She can use some positive thoughts even though I think we're past the worst of it. Thanks!

Poor Baby

Well, the pedi thinks Chloe has an ear infection. I say "thinks" because he couldn't visualize her ear drum very well, but he said it all looked consistent with an ear infection. So she started antibiotics this evening. She was pretty good at the doc, smiling and hanging out, crying with vigor during the exam, then smiling when we left, but then she fell asleep in the car and it's all been down hill since then. She was running a fever again this afternoon and has been either crying or sleeping. I haven't seen her this sick in a long time. But she's breathing comfortably and tolerating some feeds, so I think she's just feeling lousy. The next 48 will tell us a lot (whether the antibiotics work or not). I'm hoping all the sleeping is just her sleeping it off. She'll get some extra snuggles from mommy tonight, that's for sure!

Waiting for the Fever to Break

The video is from Saturday night of Chloe lying in her crib, breathing hard with a high fever. Last night was a repeat with more vomiting, dry heaving and diarrhea, along with a nice fever of 104. Got her temp down this morning with Tylenol and Motrin. We're off to the doc at 11 to check her ears and lungs.

Sick Baby Girl

Chloe got the stomach bug last night. She seems to be a little better this morning, although she hasn't had anything to eat. I just gave her her meds, so we'll see how those sit. She's 102 and has a rattley cough. I'm putting a call into the pedi this morning to help me determine what to do about tube feeds and the rattly cough. She's a trouper though and other than that cough, I'm not too worried.

Chloe helps with laundry!!!

yes, that's underwear on her head!

Chloe's first 9 weeks at OneTrueMedia.com

Here is the first montage of Chloe's first 9 weeks, pre-heart surgery. Remember to pause the music at the bottom of the blog before playing if you have your volume up so you can hear the music.

Make video montages at www.OneTrueMedia.com

Chloe cough

Chloe's got a croupy sounding cough, but so far so good. :) Finger crossed.

I've been working on a montage of Chloe's first 9 weeks. I'm just so impressed by how far she has come in the last year. It is TRULY amazing. She is a strong fighter. I'll try to post the montage on the blog. It's a little long, but boy what a journey. Hope you enjoy. (assuming I can get it posted! LOL)

We'll Take It!

So Chloe wasn't exactly "discharged" from the pulmonologist's service, but her sleep apnea HAS dramatically improved and we don't need to repeat the sleep study (assuming no symptoms arise) for another year! Woo hooo! He DOES expect that once her tonsils and adenoids come in her sleep apnea will get worse again (she does still have it but withOUT desaturations in her oxygen level and withOUT changes to her vitals - that's ALL good). So the next step will be to take out her tonsils and adenoids and then continue to monitor her to determine if she'll need to utilize the cpap again, but for now she is officially OFF OF CPAP. Another wooo hooo! She's come a long way baby!

Off to the Pulmonologist

Well, today we're off to the pulmonologist for what I hope to be her last appointment with him for a long time. I got word from her supply company that they got discharge orders for her CPAP so I guess the sleep study results were good! I'll get the official word today at our appointment. Don't get me wrong, I LOVE this doc and look forward to appointments with him, but that's more of a personal thing (tee hee, if you get my drift), but I'm all for checking another specialist off Chloe's list. I mean she has 7 after all! So off we go today with high hopes of some good news. I won't expect anything less!

Into the Light

I’m not even really sure where to begin, but I thought it was important that I write a little bit about what’s been going on with me for the past year. I have somewhat recently started my ascent out of a deep dark place – depression. Last spring after experiencing some sort of virus that was complicated by my fibromyalgia I suffered some EXTREME fatigue. After weeks of wondering how I could possibly take care of my children I finally broke down. This accumulation of anxiety and stress lent itself to 4 days in bed, nurtured and cared for by my wonderful husband and mom. Depression, no matter what its source, is a dark place to be. At my worst, even the presence of my beautiful children wasn’t enough to pull me from its depths. For many who will read this, depression just isn’t something that can be understood. I get that and accept that. But for some, even if it’s only one person, a sense of familiarity will ring true. And this is why I write. If the loneliness that is depression can be relieved even just a little to someone reading this then it will be worth having put the words down for all to read.

This past year of struggle was also heightened by the complicated nature of caring for a child with special health care needs. For me, Chloe’s rise out of constant crisis left me with a bit of post-traumatic stress. I was just exhausted and fatigued from all the worry and constant state of heightened fear for Chloe’s health. When she was better, I suffered from two emotional problems: 1) what to do with myself now that she was better and my psyche had adjusted to living in constant stress and 2) the decrease of adrenaline once the heightened stress subsided, leaving me open to the post-traumatic stress. So take the physical virus, the emotional component of caring for a child with special health care needs, and the constant financial stress related to Chloe’s care and you have the makings of a perfect storm.

So many times over the past year I sat down to write, but each time the darkness overtook me and the words just didn’t flow. Or they did, but they were from such a sad place I didn’t dare post them. I write now, as the storm passes and through the clouds I can once again see the glimpses of light. I can look into my children’s eyes and feel warmth and true joy and laugh ALONG with them. I can feel hope for my family AND myself and know that everything is going to be okay again. I can know with confidence that Chloe is going to be okay, at least for now and that the simplest cold is no longer going to threaten her life. I can watch my older children rolling around with her on the floor and not worry about how they’re going to handle the stress of yet another trip to the hospital. I can accept and enjoy the comforting embrace of my husband or the sweet tender kiss on my cheek from my mom. I can FEEL the warm hug from the sun as it shines through my window. I can laugh. I can cry. And most of all I have hope again. I feel lucky to once again emerge out into the light.

I hope that if anyone else out there is struggling with depression that they will know they are NOT alone. And that every struggle we face, in the end, makes a stronger, better people.

Puttin' On the Pounds!

So Chloe weighed in at a whopping 19lbs 6oz last week. I'm so proud of her. That's over a pound in a month! She's now 70th percentile for height and about 20th percentile for weight (up from the 5th). That's on the Ds chart. She's right in with the rest of the family. Tall and skinny (well, as kids anyway!) I think I'm going to cut out one of her daytime g-tube feeds since she's obviously eating really well. I found that she'll actually take some milk too if I don't do that feed. Yesterday she took 5 ounces and today she took 4! So I'll cut out the 6 ounce feed and give her any ounces she misses in the day at night. I'm very excited. It's a big step.

A Night at the Museum

Every year I get to enjoy a special night with my son Xander as we sleep under the dinosaur bones at the Peabody Museum for Dino-Snore. We go each year with our good friends Ashley, Jaycob and Khalid. Here are some pics. Enjoy!

Mommy and Xander


Ashley and Jaycob.

Buddies!

Her Face

Thought I should post some pictures of her face since the last post was of the back of her head! LOL These pics were taken by my four year old. Pretty good, huh?