Sunday, November 22, 2009

Emotional Ups & Downs

Like most other heart moms that I know, my days are filled with emotional ups and downs. Most of the time I am able to remain fairly immune to it, only truly breaking down or getting overly ecstatic when the situation warrants it. Maybe this week was different?

Had a really hard time at PT @ Phx Children's. Our therapist is very sweet and did a wonderful job, but she mentioned she was fairly concerned about Grace's plagiocephely (flat head). This wasn't the first time we'd heard someone mention this- most agree that it's because of her multiple heart surgeries and prolonged hospital stays (NICU, PICU, etc.) that require her to be lying down. No one ever mentioned that they were overly concerned, most mentioned that they expected it would go away over time, with her spending more time in a seated position. However, the PT wasn't convinced. The PT advised me that I really should consider a DOC band- basically a helmet that Grace would wear for 23 hours a day, probably for 6 months. She reccomended that I call her pediatrician ASAP for a referral to Cranio-Tech @ Phx Children's and get her in. She explained that her sense of balance would be off, as her head is over the front of her spine entirely, and she would never fit into a standard bike helmet. Now, I'm pretty darn good about keeping my emotions in check until I get a chance to process the information. The car ride home was BRUTAL! I was bawling hysterically. I called the doctor for the referral, and my family, and my spouse. I can't explain this without sounding crass- so bare with me... Grace has been through a lot this year, yes? And you can imagine the questions that I get practically every day? They used to ask me if she was going to live, or if she was smart, now it's "Is she feeding on her own yet?" "Is she sitting up yet?" "She's walking, right?" UGHH!!! Enough!! I HATE, HATE, HATE those questions!! I know it's not my fault, but it makes me feel like an incompetent mother, like I'd prefer my kid just sit in a chair for the rest of her life. My mom tries to remind me that these people typically mean well, but that they don't have the experiences we've had, aka a heart baby. So, when I thought of one more thing- a very visual thing, the helmet, I lost it. I couldn't imagine keeping my poor little one in this helmet for 23 hours a day- sleeping, eating, etc. But, if it was going to help her, I was going to do it. Thankfully, my hubby asked me to call the pediatrician for a consult and referral. Turns out, the DOC band is typically most beneficial in 6 months and younger children- Grace is a year in 8 days! Also, the DOC band is PURELY cosmetic- there is not a true need for it, so long as no part of Grace's skull is pushing on any nerves (it's not). So, all those tears- unneccesary. Although, it is nice to get a good cry in every so often. I don't usually allow myself to really process my experiences. It's odd because people always comment how strong I am, but maybe it's really because I'm in denial? How's that for mentally healthy? HA!

Anyways, the rest of the week was WAY better. New Moon!! Woo-Woo! We had a fabulous time. We decorated my van (calling it the New Moon-ie Van), met Embry Call (Kiowa Gordon), won a trivia contest, got free loot, and saw the inside of a Embry's limo. After all that, we got to see the movie! The movie was much better than I expected, especially since the 1st was so terrible. I had a genuinely GREAT time, but was super exhausted the next morning. Life was rough that Friday.

Saturday evening we decorated for Christmas. Yes, it's early, but, we lost all of December, January and February of last year- living at Phx Children's. This year, we're having extra Christmas and loving it! Grace was even able to help put up some of the ornaments- she's such a big girl!

I can't believe she's going to be a year!! I have taken some time this week to look back on our year- she went from a 3 pound baby, to a big girl who has 2 teeth, can stay in the crawling position, and who laughs uncontrollably! I love her!!

Her birthday stuff is almost done- I'm excited to celebrate our year. It's been the best year of my life, but also the scariest- one I would never want to do over again, but if it meant receiving my blessing again, I'd sign up in a heartbeat.

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  1. I'm so glad you got better news about the helmet. Our PT actually took her own daughter into the main neurosurgeon at PCH because of the same thing and he said "helmets don't make that much of a difference". So, there you go. But I can see that you would be a wreck, I would be too.

    Glad you got out to see New Moon. I was going to try for it tomorrow, but with Daddy sick, there is no one to watch Owen :(.

    LOVE LOVE LOVE the invitations!! I hope you have the most wonderful celebration ever!!

  2. First of all: LOVE the New Moon van!! I saw the double feature Twilight/NM midnight premier on Thurs night! Go Team Edward! ; )

    Second of all: Friday morning at her 9-month check up Scarlett's pediatrician asked me a simple question: "How r u holding up mom?", and outta nowhere I *bust out* in tears! I have no idea where it came from. I guess I'm in denial too(!?) I appear to be strong to everyone else, but inside I'm an emotional wreck!!

    Thirdly: LOVE that adoption ornament and LOVE the fact that u have ur tree up!

    Hang in there heartmom! We're here to support you:) To commiserate, and to understand. I'm so happy she doesn't hv to wear the helmet!

    Love and BIG Heartmom Hugs,

  3. Oh my goodness - I have goosebumps because I feel for you! Tears every now and then are what make us strong! Showing that weakness means that we are striving for what's best for our kiddos and we know what that might entail - not just for them but for us too. I'm so glad that it is just cosmetic and not a needed thing. We face those same questions and everytime we are asked - "can she sit up" or anything like that - i just smile and tell them - in her own time she will!
    heartmom hugs!

  4. ((HUG)) my friend! We both have had our share of have witnessed many of mine! I think that being able to breakdown and have that release of emotions makes us better moms. You get the emotions out and then you can take a fresh look at the situation. It is so hard having our special little girls, but they will each do their own stuff in their own time. :) BTW, I HATE those questions too. They drive me mad. You are not alone.

    I am so jealous that you got to decorate before Thanksgiving. Adam is a scrooge and makes me wait until then. I will live vicariously through you until Thanksgiving comes...ha ha!

    Love you!