Monday, March 8, 2010

...ups and downs...

Mostly ups, no serious downs. I guess the downs have been mostly mine and not really Bela's. Anyway.. more on that in a minute. At her cardiology apt last week she once again had a fever of 103, puked everywhere several times, got her blood drawn, and we sat and waited to hear if we would be driving home that day or walking over to the hospital to be admitted. After an hr the blood work came back 'okay'. For some reason it has really taken a toll on me. As I've talked to my mom and close friends about it, I think what has me the most 'down' is that I just never anticipated things to get more difficult as she got older. In many many ways, things are better. But in many other ways, it is just getting more and more difficult. I don't think I ever really thought about what all this would do emotionally to Bela. She is terrified of new people and new places, often making herself throw up from fear. A few weeks ago I took her and Bens to the library, a place Benson knows well because I took him there all the time before Bela was born for story time. When the doors opened she freaked out, turned and tried to run away only to trip and fall flat on her face. I had Benson go in with the rest of his class and took Bela outside to rock her. It was just so sad to me how scared she was of this new, big building. Just the fact that she had to be scared in the first place. She never did relax either the whole time we were there. At her cardi apt she was so worn out by the time they drew her blood, she saw what they were preparing, burried her face in my chest, stuck her arm out and said, 'okay' through her tears. Can I just say it BROKE my heart into pieces!! Dr. visits and tests and procedures were always hard, but I never knew how hard they'd be as she started to understand what was going to happen to her. THe fear in her eyes, and feeling her body shake when I get her out of the car at doctors offices is so hard. She says over and over, 'home'. Many of them don't even do anything that hurts her, she just dosn't know that, so she is terrified of what might happen to her. It's just getting so much more difficult for me to 'accept' the life she has to live as I start to see it affect her little personality. I know it is her life, and she is here because of everything she's had to go through, but as her mommy, sometimes I long for it all to go away. My mommy protection is off the charts for her, and when so many times I feel I have 'failed' to protect her, although I know I can't do anything different than what I'm doing, it is still tough for me..

She was also down almost a pound and a half in weight. ugh! She was eating mostly on her own...now we know it wasn't enough. It's very frusterating considering that most days it is still my entire life--feeding her. I can't seem to get enough calories in her by tube feeding without making her vomit them back up, and who wants to live like that? It's not fair.

But none of these things outweigh how amazing SHE is. Just her--no eating issues, no bad heart. Although she has trust issues, fears and anxieties that no 2 year old should have, she is overall a happy and precious little girl, and I am SOO grateful for those beautiful days when she can just be 2. She loves to be home, 5 minutes into any trip she is already asking to go 'home'. She knows she is safe here. SHe is happy here and loves to be with her family. I love to be able to provide security for her. She currently loves Diego, princesses, sand, Tinkerbel, chocolate, dancing, and cuddling.

It was very sweet to quietly celebrate her 2nd year of life. What an UP it was!! I knew this year that a big party would not be her thing, so a simple family party was perfect. Mostly we just held her a tiny bit tighter, kissed her a few more times, rocked her a few more minutes, as we marvelled at how much she has changed, blessed, and beautified life. I love her more than I can say. I have been there, by her side at every single doctor appointment, blood draw, IV stick, recovery, illness, ER trip, echo, vomit, withdrawal, therapy, xray, study.. and I can honestly say, as I know I've said before, but even more now at 2 years old, she is my hero. For all she has to endure just to live. It inspires me.

Well...there you have it. My current, raw emotions. My hopes, my fears, my ups, my downs. When all is said and done, that's life! And there would be no ups without the downs, right?!...

14 comments:

The Tams Family said...

Oh Ave....I've got no magic words for you, but I know exactly how you feel. I think the hard part is that for several months we've kept these kids inside away from everything to keep them protected...as a result the only real experiences outside their comfort zones have been hospitals, drs, etc. Addie has gotten a little better, but still does the same thing. I remember taking her to birthday parties and she was doing SO well at home and she'd scream and cry the whole time. I'd get so frusterated because it made her seem so much sicker then she was...I know it's hard not to get frusterated (I dread bathtime everyday and WISH one day she would take a bath and not scream..you heard it!) I think in time both girls will become more trusting of people in the real world..it just takes exposure and positive experiences. There are SO many positives and Bela is such a happy and active little 2 year old! I really believe the rest will come, in time, but I know it wears you out! Hang in there!!!

emcghee said...

Yes, that's right . . . although it doesn't make the "downs" any easier. I'm trying to wrap my brain around all that. --so hard to see your baby react that way so often. And like you said, you don't think about (when she is a newborn) how everything that she will have to endure might effect her personality or play a role emotionally, or undermine her trust of new places, etc. Sorry Ave. You are both incredible people.

The Simmons Family said...

Avery... I'm so sorry. It stinks how much our babes have to go through. Owen flipped out at Cardiology yesterday and never has he even come close to not being happy at the dr (besides the scale). That was the first time, and I pray the last. I don't know how you do it with Bela. My heart just breaks. It is getting tougher the older they get.

I was so sad to read that she lost weight on her oral feeds. Bummer. Owen lost a whole pound the first three weeks of blended diet, but has gained it back. He is starting to eat again orally after a total eating strike. :) I am so thrilled with Bela's progress with eating, she gives me hope with Owen. Maybe she can't eat it all by mouth yet, but she'll get there.

How many calories were you giving her? Owen is up to 1600 to gain weight and I think it's just insane!!

Keep your chin up! Bela is doing great, her heart is holding strong, she's eating, she's HAPPY and she'll grow out of some of the fears. I can't help but to think after the Fontan, she'll get a break from SO much medical intervention and finally be just a kid. I hope.

La said...

After spending that week with you guys and watching you go through everything to feed her, I can't believe she lost that much weight! Sweet Bela. Remember when she put her head on Marie's shoulder? I think she has good insticts about people and places. It's rough on any two year meeting new people and going new places. With all Bels has been through I am not surprised she likes home the most. I am sure her happiest times have been there.
I am so glad we got to spend her second birthday with her. We love you all so much.
Eden and Char miss Benson and Bela. Can't wait till next time we see you!

Evie's Story said...

Such is the life of a heart mom. I feel it with you Avery. It breaks my heart. We had snow a couple weeks ago and Evie literally went into a panicked craze when I tried to zip her into a snowsuit...to many procedures she has endured strapped down!

I know your heart longs to protect her not only physically, but emotionally too.

She is SUCH a beautiful girl. She will grow and mature and learn to understand...keep holding her tight until then. She can be in no doubt of your love and protection!!

Dianne said...

How much I know the ups & downs and what it takes to just feed your child. Ashlyn is still pretty calm for all the doctor visits...but isn't even 18 months yet. So I guess she'll probably go through that too. Oh how I'm dreading that third surgery...

Nicole said...

Avery,
Sorry to hear she has lost weight. Keep at it! You're doing great!!! Bela has been through so much in her little life and I think she is amazing! We were in the ER yesterday with Elijah and he was freaking out when people just looked at him. At their age, it's just too hard to understand (not that they should have too). Hopefully, the Fontan will lead to less appointments and more time enjoying life for Bela. You guys are in my thoughts :)

The Joslyn Family said...

Wow Ave, you and Bella are amazing with all that you have had to go through. I'm glad she is doing well overall. Happy Birthday to her!

Jeanette Lefrandt said...

I've been thinking a lot about you guys lately as Jon and Ashley's baby has had some complications. I admire your strength and optimism on a regular basis! You are in my thoughts and prayers often! XOXO Jeanette

The Silly Nilly Family said...

You're amazing Avery.

Anonymous said...

You could easily be making money online in the underground world of [URL=http://www.www.blackhatmoneymaker.com]blackhat scripts[/URL], You are far from alone if you haven’t heard of it before. Blackhat marketing uses little-known or little-understood ways to build an income online.

Angela said...

my son Isaac was tube fed from birth and has Down syndrome and had heart surgery for multiple holes (valves pretty good though) at 4 months old, age 4 he's finally eating and had his button removed two websites I found very helpful about tube feeding and weaning are http://tubefedkids.ning.com/forum and http://www.notube.at/node (probably have the best reputation in the world)

Lisa said...

Avery, every time I check your blog, I admire you more. Sweet little Bela has gone through so much, and she is lucky to have you as her mom protecting her.

Susie Jensen said...

Hey Avery...Just checking in on you guys and seeing how you are doing. My heart is so sad after your post because it's such a tough thing and there isn't always alot of relief in near sight. Sometimes I feel as if we're all fighting an uphill battle in snowy conditions all the time with our heart kiddos. Then we'll get a break from the snow and see some sunlight for a little while. Then...more snow. =) And when the days are good, they are really good! And the same with the not-so-good days.

Brynlyn was tapped out at preschool the other day and said "I go home to Mama now." Even as an almost 4 yr old she sometimes has a tough time living in the outside world, but it is getting better as she gets older. They are so conditioned to knowing that home is their safe haven where there are no doctors and no monitors. I think it's definitely their "Happy Place" and who ever wants to leave their happy place??? (My happy place is shopping at Marshalls, but that's another story. =)

I'm glad you are able to share your feelings and vent on them a bit. That's so healthy and normal and will offer some relief to your tender emotions. It also helps to know that there is a world full of Moms out there that are pulling for you and Bela and your sweet family and know you guys are doing an incredible job with Amazing and Beautiful Bela!

Keep up the great work and know that you are loved.