I know it's been WAY too long since I last posted- 2 months and 2 days have passed! So much has changed, it's like I'm a mother to a completely different child! Grace is really coming into her own these days- such a wicked sense of humor! She really keeps us all laughing and smiling, and laughing, and occasionally pulling our hair our, but I hear that's normal.
Okay- so quick super-speed rundown: Grace is off the oxygen, she's been off for quite some time now (a month, maybe??) and she's kicking butt and taking names. Her oxygenation levels are actually BETTER without the oxygen- crazy kid. Grace is off the monitor at night (the apnea monitor) that monitors if she stops breathing. Grace is off the saturation monitor full-time, I only have to spot-check her throughout the day. Lastly, Grace is still with a feeding tube, but that's a whole 'nother story, so keep reading!
Through random means, we met a Navajo gentleman who has taken Grace under his wing, so to speak. The first time we met with him, he blessed Grace, myself, Felix and my mother to give us all the strength to help "heal" her. At that time, Grace was on the oxygen with no outlook of coming off anytime soon.... now, regardless of who your God is, I think this is pretty darn amazing. A week after that blessing, Grace was 100% off oxygen, and like I said before, she's even stronger now.
A week ago, we met with the man again, this time at a dedicated healing ceremony for Grace. Several tribesmen (from various tribes, including Grace's!) came together for a purification ceremony in the sweat lodge. Before entering the sweat lodge, they "baptized" Grace and again blessed all of us. Unfortunately, Felix wasn't there for this ceremony as he's been in Denver for 2+ weeks working his tail off. The ceremony was amazing- we met a Lakota man who will be dancing for Grace, with eagle talons piercing himself. To the casual observer, that probably sounds a bit creepy, but I'm told it's quite the blessing and honor for someone to do this for us. Besides, I really want Grace to know her culture.We got Grace's ears pierced on April 15th.
Grace and her buddy Bree hung out together- they're so cute together. They hold hands whenever they're together and giggle and smile.
We had Grace's 1st Easter- she was spoiled rotten! She got gifts from us, Papa & Grandma, Oma and Mimi, and of course, us. Oma made a HUGE breakfast- so yummy!! She wore her yellow Easter dress for some of the day, until she did the typical spit-up all over. :) Ahhh... kids! Gotta love em'.
Apparently, her head is too small (micro-cephely) and this can lead to a whole gamut of learning disorders, or to nothing (really specific, right?!?) and because of her random genetic mutation, they're not really sure what that will do, so they want to watch her. I understand wanting to watch her, but they try to hypothesize what could go wrong with her based on this genetic mutation- but there are so few children in the world with this specific mutation, that there is no concrete evidence, so the doctor actually says that it is her "best guess"..... it makes me so mad, because moments before she's telling me all the horrific things that could happen (mostly learning-related), but again, it's all just a guess and she could be uber-brilliant.... UGH! Of course they want to see her again, but I wonder, is it for our benefit, or theirs? Do I see a medical study being published in the future?? Okay, I'm done being snarky...
Grace's surgeon is moving to San Francisco. He's a young, extremely capable surgeon and doesn't feel like he's getting enough "fame" here in Phoenix, and wants to work at a University-setting where he too can publish medical studies (do I see a pattern here?), so we have the choice of flying out to San Francisco to work with him, staying here and working with the head of CT (cardio-thoracic) surgery, or flying to Houston to work with some other brilliant surgeon. I was 100% ready to fly to California to work with our prior surgeon, but the more I speak with our cardiologist the more I think we may stay here. The surgeon that operated on her the first time was assisted during the lung-crisis (opening her, closing her, opening her again) by the head of CT surgery, and the head of CT surgery has MUCH more hours and experience under his belt. I asked the doctor the age-old question, "What would you do if this was your child?" but he answered, unexpectedly, "Neither." Huh? Yes, he explained he would probably go to another hospital, because if God-forbid something went awry with the surgery, he'd have to face the co-worker that operated every single day.... Okay, I get it, but I was looking for advice, here! Oh well, I guess he saw right through my inability to make decisions and turned it back on me.... smart man. Ha!
Okay, so the feeding issue.... let's back up to the beginning and I'll lay out the foundation for you.... When Grace was born, she was given donor breast milk via NG (nasogastric, aka in the nose) tube. This went on until she got NEC (read prior journal entries) at which point she went on NPO (nothing by mouth, or nose as you have it). After surgery, she went back on the donor breast milk, but eventually got Chylothorax (read prior journal entry) and was put on Vivonex, a fat-free formula to help with the fatty lymph that was collecting. During all of this, we never really tried to feed her by mouth... not until 2 days before our release from the hospital, when they started her on Neosure. She did well at the hospital, taking up to 15 cc's by mouth at a feeding. Unfortunately, about a week after we came home, we discovered by way of constipation and bloody stool, that Grace was allergic to the Neosure and that we would be switching to Pregestimil, a partially broken-down formula that would be easier on her tummy. With that swtich, we lost Grace's ability to mouth-feed. She became enraged whenever anything liquid-like came towards her mouth. We could maybe eek out 5 cc's per feeding, but it was a pure struggle. After weeks of diarrhea, we discovered that Grace was also allergic to this formula, and they switched us to our current formula, Elecare. Elecare is a crazy stinky formula- it's not available retail AT ALL, so we have to have the home health company deliver it... what a pain! Throughout all of this, the doctors have been referring us for various lab works- modified barium swallow, upper GI, etc. The modified barium swallow was to check for aspiration.
I know I'm missing things- so much has happened over the past 2 months!! We had Grace's fundraiser garage sale- it did awesome, over 2k raised!!
Grace's surgeon is moving to San Francisco. He's a young, extremely capable surgeon and doesn't feel like he's getting enough "fame" here in Phoenix, and wants to work at a University-setting where he too can publish medical studies (do I see a pattern here?), so we have the choice of flying out to San Francisco to work with him, staying here and working with the head of CT (cardio-thoracic) surgery, or flying to Houston to work with some other brilliant surgeon. I was 100% ready to fly to California to work with our prior surgeon, but the more I speak with our cardiologist the more I think we may stay here. The surgeon that operated on her the first time was assisted during the lung-crisis (opening her, closing her, opening her again) by the head of CT surgery, and the head of CT surgery has MUCH more hours and experience under his belt. I asked the doctor the age-old question, "What would you do if this was your child?" but he answered, unexpectedly, "Neither." Huh? Yes, he explained he would probably go to another hospital, because if God-forbid something went awry with the surgery, he'd have to face the co-worker that operated every single day.... Okay, I get it, but I was looking for advice, here! Oh well, I guess he saw right through my inability to make decisions and turned it back on me.... smart man. Ha!
Okay, so the feeding issue.... let's back up to the beginning and I'll lay out the foundation for you.... When Grace was born, she was given donor breast milk via NG (nasogastric, aka in the nose) tube. This went on until she got NEC (read prior journal entries) at which point she went on NPO (nothing by mouth, or nose as you have it). After surgery, she went back on the donor breast milk, but eventually got Chylothorax (read prior journal entry) and was put on Vivonex, a fat-free formula to help with the fatty lymph that was collecting. During all of this, we never really tried to feed her by mouth... not until 2 days before our release from the hospital, when they started her on Neosure. She did well at the hospital, taking up to 15 cc's by mouth at a feeding. Unfortunately, about a week after we came home, we discovered by way of constipation and bloody stool, that Grace was allergic to the Neosure and that we would be switching to Pregestimil, a partially broken-down formula that would be easier on her tummy. With that swtich, we lost Grace's ability to mouth-feed. She became enraged whenever anything liquid-like came towards her mouth. We could maybe eek out 5 cc's per feeding, but it was a pure struggle. After weeks of diarrhea, we discovered that Grace was also allergic to this formula, and they switched us to our current formula, Elecare. Elecare is a crazy stinky formula- it's not available retail AT ALL, so we have to have the home health company deliver it... what a pain! Throughout all of this, the doctors have been referring us for various lab works- modified barium swallow, upper GI, etc. The modified barium swallow was to check for aspiration.
The thought was, maybe she's not eating because she's unable to get it to her stomach, and instead she slowly chokes on it.... Nope, not that. The modified barium swallow came back normal, but it did give us more information. Grace is able to swallow, but she's super un-coordinated once liquid hits her mouth. She can't figure out how to suck, swallow and breathe all at the same time, and doesn't know how to ripple her tongue to move the formula backwards. This gave us some hope- she just needs practice! Hallelujah! We saw a speech therapist, and they agree, major oral aversion (basically fear of anything in her mouth), very weak suck, and inability to coordinate swallow. This means we'll be doing speech therapy 3x per week, 45 miles away from our house- you know you're jealous!!! Of course, I would do anything for her, and I'll take her to each and every appointment with a smile on my face, I promise! She'll also do speech therapy in home, and also at a local, nearby clinic. To add to that, they'll have her begin physical and occupational therapy so that she can have an early edge on walking. The thought is that she won't be able to crawl after her next heart surgery, so if we can get her close to, or actually walking by the surgery, she'll be a much happier kiddo. Stay tuned... we're not even rolling over yet (at least not when she is awake). Next week we'll meet with the GI doc again and talk about the possibility of a G tube, a temporary "button" surgically inserted into her belly, so that her face is left free and clear of any tubing, her throat is left free and clear of tubing, and this will hopefully facilitate better eating habits. For more information about the G tube, I suggest wikipedia- that place has information about EVERYTHING!
Blair and I painted Grace's toes- she got the royal pedicure experience!
Thank you to all of you who helped, either by donating, thinking of us, praying for us, or even assisting with the actual event. We couldn't have done it without you!
I celebrated my 1st mother's day- what a great day! It's too bad Felix couldn't be there to celebrate, but we did brunch in style @ the JW Marriot.
I celebrated my 1st mother's day- what a great day! It's too bad Felix couldn't be there to celebrate, but we did brunch in style @ the JW Marriot.
I feel so blessed to be a mommy to my little bean, she's my world! I find myself just staring at her in amazement, she's learning so much, so fast!
Grace will have a few cousins coming this year- my sister-in-law is approx. 4 months pregnant!! My cousin Danelle will have her 5th child, my cousin Sheryl will have her 2nd daughter, and my cousin Noelle will have her 2nd child, this one being a girl. So many blessings!!
Grace will have a few cousins coming this year- my sister-in-law is approx. 4 months pregnant!! My cousin Danelle will have her 5th child, my cousin Sheryl will have her 2nd daughter, and my cousin Noelle will have her 2nd child, this one being a girl. So many blessings!!
Well, I think that's as much as I've got in me for today. Ta-ta for now!
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