Thursday, February 18, 2010

Colicky Craziness!

WHEW! I'm still alive- although, you probably couldn't tell by my lack of blogging. What an exciting two months we've had... (okay, so it really has been 2 whole months since my last post)...

The Wisconsin trip was a blast! We spent most of our time with family, doing family dinner, having Grace play with her cousins, celebrating the new year with my step-brothers, and even visiting friends from high school. Grace wasn't such a fan of the cold, but neither were we. Getting her in and out of the vehicle in -20 windchill weather was, well, unpleasant. It didn't snow the entire time we were there- I was bummed, as I was really looking forward to a majestic quiet evening. The first snowfall is always so magical- it's quiet, and it's like a fresh start. I think the best I've heard it described was in an episode of Gilmore Girl's. Yes, I watched that show. Yes, I loved that show. Yes, it was entirely unrealistic.

Rewinding a week or two before our Wisconsin trip, and possibly to one of my more recent posts, I referenced adopting another baby. Grace's birth mom was pregnant, and didn't seem sure as to what she was going to do- it was another little girl. The timing wasn't ideal, but we would have been blessed and thankful, and stressed, but blissful. God had his hands in this, as Grace's mom decided to parent her, and we were able to focus on Grace. After examining the timing, and getting ready, we decided that maybe we were ready, after all, to have another baby. We debated trying on our own (I battle with PCOS, and my husband with less than ideal sperm counts), knowing the cost and stress involved, or adopting again. After praying, and talking with friends and family, we knew in our hearts that we were meant to adopt. We decided to stick with the agency that finalized Grace's adoption, AASK (Arizona Adoption of Special Kids), a very small, slower agency. We figured on a 2-3 year wait, at max, and prepared our birth parent letter.

Back to Wisconsin... while there, I got a text from the social worker advising me to check my email. A local couple in their 30's were unable to financially keep their baby boy, and they were looking for families. We fit their ideals- would we be willing to submit our profile? We prayed, and decided that yes, we would. We figured it was out of our hands, and that 4 other families were being submitted too, so if it was meant to be, it would happen, and if not, God would provide. Honestly, we didn't think we'd be chosen as I was very honest about Grace's heart defect, and about the fact that we had adopted her- I figured they would choose someone who was unable to have children, giving them the opportunity to be parents. So, we got on the plane to come home, and got the phone call the next morning- they picked US!!! The parents wanted to meet us, and the baby was set to be born within 6 days. Wait- 6 days?!? OMG!! We scrambled- we wanted to get stuff, but you never know with adoption, the parents can change their mind at any point until consents are signed. We debated- do we plunge both feet forward, or do we wait? We plunged, and thankfully so! We bought a dresser, had a painting party, and received boy clothes from friends, and even strangers (friends of friends). We are so very blessed by the love and support we receive. My friends insisted on throwing me a shower, so I got my essentials, and tried to calm my nerves. On January 17, 2010 Gavin Wyatt Marchese was born. Gavin weighed a tiny 6 lbs, 4 oz and was 19 inches long.

We were able to be there immediately after birth, and we were the first people to ever feed our son- AMAZING! You have to imagine how foreign this was to us- we never had the opportunity to do any of this with Grace. Heck, we couldn't even hold or touch Grace for the first few weeks! He is perfect in every way. Being the neurotic heart mom that I am, I took him to the doctor and grilled our poor pediatrician. Our pediatrician, one of the most amazing men, simply laughed at me, and told me that try as he might, he just couldn't find anything wrong with our son. He proceeded to tell me that this was common for parents of special needs kiddos.

Gavin came home 24 hours after birth and was a perfect angel, until about 2 weeks ago. Then, he started crying non-stop, especially in the evening, arching his back, tightening his stomach, screaming and screaming and screaming.... Couldn't take it anymore- thought I was seriously going to lose my mind. Once he starts crying, Grace chimes in too. Went to the doctor. Diagnosis: colic. We're switching to an elemental formula, one that's already broken down so his stomach doesn't have to work so hard. In the meantime, we've tried pretty much every possible hold, swaddle, swing, stroller, walk, car-ride, etc. We tried gripe water and it worked like a miracle for the first night, but not so much there after. We are officially in a bad place! Hoping and praying that this gets better- I am massively sleep deprived, and my hubby and I are irritating one another non-stop.

Grace has started a blenderized diet of real food. I couldn't handle the puke fest every day, and figured there had to be something better and healthier than what she's been doing. She's almost 15 months and still on an overnight drip- time to get things in check. So, we went to GI with high hopes.... and got shot down. I won't name names, but our experience with them on this visit was awful enough to prompt me to write a letter. The letter still hasn't been written.... but I'm still pretty peeved. So, I did some research. There is a book about this kind of diet written by two professionals out of Tucson. I emailed one and begged for a name of an RD, and was emailed immediately- Hallelujah!! In the meantime, I dove in feet first, taking Andrea's lead (Owen's mom). We've had a few hiccups, but mostly she's doing AMAZING! She has more energy, and seems to be in a better mood. We've found she's allergic to bananas and possibly milk, but we're being creative. The RD is putting together a more balanced menu for us, and trying to lessen volume but increase calories. Either way, this is the BEST thing we've ever done!

Life is obviously chaotic for us- a CHD toddler and a colicky infant, could it get any more exciting? :) We take it gladly, except in the middle of the night, but even then, we survive. Grace is on the cusp of crawling, her hips are a bit too weak (low-tone from being a preemie), but we're getting there. She can stand holding on to an object for almost 20 minutes.

She's got PT, OT and feeding therapy at home, and then PT at PCH. Heart-wise, we're looking good. We've increased her viagra (the pressures were still a tad high), but we're hoping to not have a cath until this next winter. We had an RSV scare this past month, but Grace made it through with flying colors- mostly because of having access to Synagis. Seriously, that is a blessing!

We've been watching the Olympics (well my husband has), and I heard from another heart mom, Melodie (Scarlett's mom) that Shaun White is a CHD survivor, dx'd with Tetralogy of Fallot. The same thing Grace has! So, I read up on him, and I'm completely confused.... he's only needed 2 open heart surgeries, both before the age of 1... So, what did he do? Why is it that every other TOF kiddo has multiple surgeries throughout life, as they outgrow their conduit? Maybe there is another kind of TOF?

Throughout this mass of craziness, I've had amazing support, as mentioned above. But, seriously, Tasha & Adam, (Bree's parents) I couldn't have done this without you. Your support, at all hours of the night, has been life-saving. I'm thankful to have such a great friend living so close (5 houses away), and Grace and Gavin are blessed to have such wonderful kids to play with!

Making a Valentine's Day card for Daddy- so sweet! She ate the crayon and colored her face instead...

A lot, right? WHEW! We made it... and I again, will set a resolution to blog more. The little stuff and the big stuff. Night all!

PS- Pray for Gabriella! She's on the transplant list, but she's running a low-grade fever. God Bless that little warrior!

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3 comments:

  1. Thanks for the update! I'm laughing and crying with you. It does get better. Hang in there. XOXO

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  2. You have alot on your plate, but taking it in strides. Hang in there. The colic eventually goes away. I'm so glad Grace is doing well with her new diet. Keeping you all in my thoughts and prayers. To answer your question about Shaun White and his surgeries... Not every TOF baby had a conduit placed. Some children just have a "simple" TOF and are able to have a repair in one or 2 surgeries. My son so far has been lucky to only have 1 surgery at 6 months. He will have to have future surgeries for conduit replacement, but he didn't have to have a shunt placed like many other TOF'ers have. Best of luck with all that lays ahead!

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  3. Aw, ((HUG)), you are pretty marvelous friends yourself! I secretly just love to cuddle your kids and hang out with you....you rock!

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