tag:blogger.com,1999:blog-4571897192914013862024-03-13T23:03:35.554-05:00With Heartfelt LoveAnonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.comBlogger427125tag:blogger.com,1999:blog-457189719291401386.post-63157627599445266032014-05-14T06:50:00.001-05:002014-05-14T06:51:32.518-05:00Eighteen Months! I don't know that we would have believed the staff were it not for the fact that we had a reminder on our calendars that Olivia's had her new heart for eighteen months already. Back in October, after she posted a zero - it gave us a reprieve of one clinic appointment and then a six month break from biopsies. In between then and now we've lived what feels like a lifetime. What made it double long was our house being under construction and Olivia getting some "crazy monkey virus" (what I call it for a medical mystery) that started with the stomach flu for everyone back in Disney World during her Make a Wish trip back in February. <br />
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Whatever it was that we all had, she had it worse and it came and it went as it saw fit like a relative that you only see and hear from when they need something. She would throw up, she would have diarrhea (sorry Liv) and then some days she would be fine. Our ped tested her for all sorts of things and we couldn't find anything. We tried adding Prevacid to the rotation thinking maybe her tummy was just so irritated it needed help calming down - only to find out later that Prevacid combined with Hecoria/Tacrolimus is no bueno for the kidneys. By late April - enough was enough, that eighteen month biopsy was due and Miss Liv was in no shape for it but I asked that the staff still put an order in for the labs just so we could look at her chemistry. </div>
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Not totally shocking after all her trials and tribulations, the labs came back that Missy was very dehydrated and her kidneys weren't very happy. All her other electrolytes and counts were really pretty normal though - go figure. A few day admission to Luries for some IV fluids and a ridiculous amount of tests provided zero answers. All the tummy troubles slowed down and vomiting completely stopped - but still no real answers. The only other thought is while that Prevacid/Hecoria combo is not nice to kidneys, her other anti-rejection med Cel-cept can cause diarrhea. Spontaneously, and regardless how long the patient has been on it without any previous issues. We lowered doses here and there - cutting Hecoria down to 25% of her previous volume; basically causing Brian and I to think surely by the time she's well enough for a biopsy there is going to be some sort of rejection there now because we're taking this big risk rolling the dice to help the kidney function by weaning down on anti-rejection meds. </div>
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Yesterday...after another few weeks of very frequent blood draws and tweaking this or that the biopsy finally rolled around. Liv was none too pleased but Daddy getting in the bunny suit to walk her into the cath lab made her feel better. Her recovery however was the worst we have ever seen. If she knew swear words and how to fly the middle finger I am sure we would have seen it yesterday. She yelled and generally disliked anything anyone said for about an hour - her face was swollen the whole day as a result of the first hour coming off the sleepytime meds. To think - people have worried she doesn't have enough fight in her to deal with her occasional bumps in the road. (makes me laugh)</div>
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Labs came back - perfect, kidneys are happy happy happy. The troublesome magnesium that is managed by giving Magnesium Oxide (essentially a laxative) was the highest its been since the transplant. Insert eye roll here - the staff's suggestion for the low numbers originally was to give her about 1,600mg of Mag; after a few days of that and some messy cleanups for us, I talked with the Nurse Practitioner and asked if Magnesium was a water or fat soluble mineral. She confirmed it's water soluble and when I pointed out that her number will likely get worse if her output is more than her intake - she agreed and we cut Miss Liv back to 800mg giving her a break on Wednesdays and Sundays. Voila - better number. <b>The best numbers though were a BNP of 60 and a rejection of ZERO. </b>Another three months free of clinic and no more biposies until Liv's second annual transplant biopsy in October/November! We are feeling on top of the world right now despite the fact that the rest of the month holds more house renovations, signing Livster up for school and all sorts of crazy times at both jobs. </div>
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LIFE IS GOOD<br />
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Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-17563461743851647032014-03-27T06:24:00.000-05:002014-03-27T06:24:04.416-05:00Back in a Big WayIt's been a minute or maybe more like four months or so...but if most of you have been avid fans - ahem Grandparents - you know today's a big day, huge in fact. Miss Olivia is four years old today. Where has the time gone? It still feels like yesterday that we were rushing to prep for your arrival and laying hardwood flooring in the nursery to make sure everything was perfect if and when we were able to bring you home. <br />
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The last year in many ways has been the most challenging in parenting you little missy. You hit three years old, figured you had the new heart that gave you all the oxygen and energy in the world and took off. The attitude took off exponentially too. All the while while you are more stubborn than you have pounds on your little frame - you are very sweet and considerate of others. One minute you'll be bossing people around then turn around and ask someone if they enjoyed their meal and are feeling all right. You are very empathetic for others when they don't feel well and try to play nurse or caregiver. <br />
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As some of you may have noticed by the pics posted - we did make it to Disney World last month for Olivia's Make-A-Wish trip. It was a once in a lifetime experience and one that both sets of grandparents were able to take with us for part of the time. Unbeknownst to us, Livvy was battling the stomach flu for much of the trip but she still managed to make the most of it and particularly loved all the princesses. She has been known to call herself Cinderella Livvy or as I like Cinder-Livvy. More on the trip later...<br />
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For now some stats about the munch...<br />
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You're now over three feet tall and your head is past my waist. You're about 32-33lbs now that you're over the tummy bug entirely. 95th percentile for height and 40th for weight according to your last clinic appointment in January. I'm jealous. This has been one of the longest spans of time in your entire life without any doctor appointments. Everything looked so good in January that all they've asked is for us to come back next month for a biopsy to continue to monitor cellular reaction and at that time they'll also do your labs to see if we need to tweak your meds at all. <br />
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Charlie Brown is currently one of your all time fave cartoons...you think it's hysterical to watch Peppermint Patty call Charlie Brown Chuck. So now you're Chuck Livvy, I'm Chuck Mommy, you have Chuck Daddy and so on. You and Daddy watch at least some part of a Disney movie almost every night - but only the parts that you really like and then you need to watch them over and over again. Tonight we're going to give you the much coveted Frozen DVD and we're fully anticipating that you watch it until you burn out the DVD or break the DVD player. <br />
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Once we brought you home from your Norwood around your one month old birthday - I never really had a doubt that we wouldn't get to celebrate many of your birthdays. But we know that things happen and there are no guarantees in life aside from the fact that we love you forever and ever to the moon and back double stampies and no erasies. <br />
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Happy Birthday Livvy!<br />
Love,<br />
Mommy & DaddyAnonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-81372633814383678112013-11-19T18:27:00.001-06:002013-11-19T18:27:53.224-06:00Things I am Thankful for - Day 19Olivia's energy...<br />
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Her grandparents left her with me tonight giving a report that she has incredible amounts of never-ending energy. It's true she has been running circles around the entire first floor like it's a race track and hasn't let up over the last hour. <br />
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This girl was so lethargic last fall that going up the stairs became too much for her towards the end before her transplant. <br />
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Now...she's literally a blur as she flies by full of giggles and pretending to be Super Livvy! <br />
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How can I not be thankful for that change of heart - literally?Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-60523027936333997072013-11-19T18:23:00.000-06:002013-11-19T18:23:19.275-06:00Things I am Thankful for - Day 18Cooking - it's my therapeutic outlet. I love to bake even though I generally really have no desire to eat the sweet treats. I love the homey feeling that it gives me and the smell it sends through the air. I want Olivia to look back on those moments of me baking cookies and remember it with a happiness or thoughts of her stuffing her little face :). <br />
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Satisfaction to me is when I cook a meal and she enjoys it, cleaning her plate and asking for more. But it CAN'T BE TOO SPICY!!! (I'm still hoping she outgrows this phase and embraces my love of everything hot)Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-20643771280765474592013-11-19T18:19:00.002-06:002013-11-19T18:19:29.706-06:00Things I am Thankful for - Day 17Early detection medicine that allowed Livvy's HLHS to be diagnosed in utero...and more importantly the doctors who took the time to explain that while her road may be tough and have bumps in it, that it was all manageable with the right team. They were so right, it was and has all been manageable. Those first few days probably changed my life more than any day that has followed. <div>
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To date - my appreciation of doctors who are just square and up front with the information at hand remain my favorite. Of course I like that they have a good bedside manner with Livvy, but if they were cold and fact based; I'd be okay with that because we would be informed. If they don't know why something's happening, I want to know that they don't know and will work with us to figure it out. If they know we're going to be in the hospital for multiple days while they wait for symptoms to subside - I want to know that and I can find peace in that information.</div>
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Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-62819905078012836912013-11-19T18:14:00.001-06:002013-11-19T18:14:31.916-06:00Things I am Thankful for - Day 16Shoes and purses - no matter how my weight goes up and down over the years...these accessories always fit me like they were meant to be!Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-66144645449613614532013-11-19T18:13:00.003-06:002013-11-19T18:13:35.166-06:00Things I am Thankful for - Day 15This blog, I know that so many of you follow Olivia and root her on. Someday when she's older she will have all of these entries to look back on the random thoughts that her Mommy had throughout most of her early years and hospital stays. Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-8959269907382573092013-11-19T18:08:00.000-06:002013-11-19T18:08:14.361-06:00Things I am Thankful for - Day 14Immuno-suppression medication...making the impossible possible. Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-53355160491954973992013-11-13T17:12:00.003-06:002013-11-13T17:12:29.858-06:00Things I am Thankful for - Day 13Stories like this one and the impact they have on me...I feel it in my bones<br />
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<a href="http://www.providencejournal.com/breaking-news/content/20131111-tethered-to-a-machine-r.i.-man-awaits-a-new-heart.ece">http://www.providencejournal.com/breaking-news/content/20131111-tethered-to-a-machine-r.i.-man-awaits-a-new-heart.ece</a><br />
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<br />Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-10977059951776029702013-11-13T16:41:00.003-06:002013-11-13T16:41:48.833-06:00Things I Am Thankful For - Day 12Olivia is quite the little chameleon. She does different things and routines with different people. I love the fact that there are certain things that she will only do with me. One of the more recent ones is curling up on the couch with me to snuggle. Or the random "Mommy, can I cuddle you?" I will drop anything to accommodate these requests. The other new mommy only is to hold both her hands and march up the stairs silly and skipping every other step. They're little things, but they're things that only Mommy and Livvy do together. What I wouldn't give to freeze her at 3.5 years old for a while. Bonus if I stop aging too.Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-28949437035379051762013-11-12T17:31:00.001-06:002013-11-12T17:31:31.187-06:00Things I Am Thankful For - Day 10When I was younger I spent a few years before formal school and then summers after that with my grandma. She would watch me during the day while my parents were at work. Monday-Friday she was generally all business but on Saturdays when Mom and I would be over there she would baby me to a ridiculous extent. During the work week we still found time to play. She taught me how to play dominoes (a practical mathematical exercise), how to play cards (geometry and identifying shapes), and how to use currency (by buying ice cream whenever the ice cream truck came around).<br />
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Most of all she passed along her love of cooking. Cooking in my grandma's world was her language of love. I spent many a day licking bowls clean or sampling her delicious meals. To this day I really can't get a handle on a darn thing that she made with me, but I love to cook nonetheless. It's my therapy and it always reminds me of my time with her - when it was just her and I roasting in her too small kitchen. Even though I was number thirteen out of fifteen grandchildren in those moments, I was her favorite! :)Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-72311808079596007502013-11-12T17:16:00.001-06:002013-11-12T17:16:31.065-06:00Things I Am Thankful For - Day 9Olivia's love of band-aids. She thinks they're little trendy items like stickers and wants them whether or not she actually has a boo-boo. It makes getting blood draws and anything medical in nature so much easier. A big thank you to the manufacturer of band-aids too for making all the sweet designs, i.e. Tinkerbell, Mickey Mouse, Disney Princesses, and now the latest and greatest Doc McStuffins. <br />
<br />Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-40173840275524461932013-11-08T17:14:00.000-06:002013-11-08T17:14:01.602-06:00Things I Am Thankful For - Day 8Online shopping. Man...when online became a popular thing five or so years ago, I couldn't embrace it at all. I loved the thrill of the bargain hunt and shopping for the PERFECT gift for someone. Now, I find myself really loving my daily and weekly specials to get that gift for my peeps. I scroll around, price match the product across all websites and pull that trigger. It is November 8th and I'm just about done with all of my Christmas shopping. YESSSSSS! Thank you internet.<br />
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Happy Friday!Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-36077303199822827042013-11-07T16:03:00.001-06:002013-11-07T16:03:25.041-06:00Things I Am Thankful For - Day 7Olivia. Clearly, obviously, oh so thankful for her.<div>
<br />But as a parent, I perhaps (cruelly) love the moments where I get to laugh <strike>at</strike> with her much to her dismay. Today - she was looking at a Minnie Mouse cartoon on my IPad...she wandered on the site to a family singing happy birthday. Completely horrified she backed away from the table, put her hands over her ears and looked in the direction of the IPad like it was possessed. </div>
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I snorted on my water that I was drinking trying not to laugh so hard that it came out my nose. Then I was greeted with a stern "DON'T LAUGH AT ME MOMMY". She means business. </div>
Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-37482449048199402712013-11-06T16:58:00.000-06:002013-11-06T16:58:12.230-06:00Things I Am Thankful For - Day 6Easter Sunday 2013 - (forgive me for explaining why I am grateful for this religious holiday that has nothing to do with spiritual beliefs or religion)<div>
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Getting dressed and ready to go for brunch...NOTHING FIT. I mean it, I tore through that closet to look for anything that was semi respectable but allowed me to breathe zipped up and buttoned. So in that moment; tears stinging at the eyes, flushed red cheeks with humiliation of the amount of weight I must have put on in a short amount of time - I made a choice to change. I did the Isagenix program which was lean and mean; added the fitness pal to my phone to chart calories and made a point to keep myself within 1,350 calories per day. </div>
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It was horrible, seriously one of the hardest things I ever had to do that first week. I had to give up my comfort of food, the emotional eating, the celebratory eating, the eating because I was bored - you get my point.</div>
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I am thankful that I hit that point of enough's enough and decided to turn it around.</div>
Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-75528221592985776372013-11-05T15:12:00.002-06:002013-11-05T15:12:41.336-06:00Things I Am Thankful For - Day 5Whenever a person has a medical procedure and needs to be intubated, you run the risk of the tube doing either temporary or permanent damage to your vocal cords. One of my most favorite sounds in the whole world is Olivia's voice. So much so that as she would undergo each procedure it was one of the things I worried about most. Would she sound the same? Would she struggle with paresis? <div>
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Today, I'm sitting here listening to her flip through the Target Christmas Toy Catalog saying "Excuse me ma'am" (she calls everyone ma'am) and asking if she can have this or that from the catalog. Hilarious...definitely obnoxious of Target, but hilarious. I could listen to this little chatterbox all day long, particularly her sleepy voice or her whispers when she really really wants something but gets shy about asking for them. </div>
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Ooops, I just told her that she wasn't going to get every item on every page of said catalog - she's displeased. </div>
Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-16295473843943213532013-11-04T05:56:00.002-06:002013-11-04T05:56:54.039-06:00Things I am Thankful For - Day 4COFFEE!!!!<br />
It's Monday morning and I'm in my office freezing. I'm essentially cuddling my cup of coffee while waiting for my space heater to warm up the room. The extra little bit of caffeine isn't too bad either. Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-16387689761828145572013-11-04T05:55:00.001-06:002013-11-04T05:55:43.868-06:00Things I am Thankful For - Day 3Today I had Christmas music going as I was doing many different holiday related activities. I am thankful that listening to certain songs by Nat King Cole and Bing Crosby took me back being little and decorating the house with my family. The music would go on and then we'd haul all the boxes out of storage to put up the trees and all the other random tchotchkes out that Mom insisted we put out on display. Above and beyond some of my most very favorite memories growing up. All brought back just by listening to a song or two.Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-71976313919850612792013-11-04T05:50:00.001-06:002013-11-04T05:50:36.207-06:00Things I am Thankful For - Day 2Pasta/Noodles - Any delightful carb fun shape or string covered with utter deliciousness by the way of sauce or cheese. I've had to generally give up this beloved food group as I've gotten older (GASP!) but this also happens to be Olivia's go to staple. It's not unusual for her to ask for pesto pasta for breakfast or pasta/noodle dish any time of the day even if it's just a "snack". I am grateful that she shares one of my biggest loves of food with me!Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-59299311175060732812013-11-01T07:39:00.000-05:002013-11-01T07:39:01.000-05:00Things I am Thankful for - Day 1Today I am appreciative of technology and the fact that my Spotify is allowing me to listen to Mariah Carey's "All I Want for Christmas" as my tradition kicks off Christmas music November 1st each year. <br />
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Makes me so excited for the holiday season!Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-41113272334394556622013-10-29T06:45:00.001-05:002013-10-29T06:45:22.809-05:00She's a ZERO!!!I think under ordinary circumstances that could be interpreted as an insult, but it's how Olivia was talking about herself all of Wednesday afternoon. The staff called to let us know that she posted her first ZERO level of rejection since the transplant almost a year ago. White blood cells continue to fall despite lowering the CellCept dose but she needs to be on the cocktail of Hecoria and CellCept so it's just something to keep an eye on. Liv is currently fighting off a cold so maybe this is how the winter is going to go, but that seems a small cost to pay vs dealing with more rejection. <div>
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During the cath they went and looked at all her coronary arteries, vessels, etc. We know that she has some interesting semi-uncommon factor in her blood that allowed her to make these crazy Medusa like collaterals off the heart that don't go anywhere. It's not hurting anything and it's not an indication of what her future holds; just something interesting. Gee, glad she wants to be atypical there too (mom says tongue in cheek). They originally tried to do the procedure through her right leg only to discover that Liv's right femoral vein is occluded. This isn't uncommon particularly in kiddos that had central lines in their legs as infants like Olivia did post-Norwood. Unusual is that the blockage is much higher up towards the abdomen vs within the leg itself. Meh, every scar on that precious body tells a story of who she is, where she's been and where she's going to go in life. </div>
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Halloween is approximately 48 hours away and she MAY be set on a costume. I only say may, because I'm still hearing about Doc McStuffins, Cinderella, Minnie Mouse but now also Snow White. If she wore orange and black with this cute little witch headband she has, I'd consider that a victory. Not to mention she needs to be feeling better, weather needs to cooperate, etc etc. </div>
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Follow up care now is clinic in three months and another biopsy in six which should be less invasive and through the neck again. Happy Halloween!</div>
Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-35789362532375073542013-10-22T18:47:00.001-05:002013-10-22T18:47:28.327-05:00Cannot Help but Be ProudRegardless of what tomorrow's biopsy results bring or the epic tantrum Munch throws over her sore leg later on tonight...I cannot help but be so proud of her today. For a three and a half year old, she has such poise. Looking to us with expectant eyes as we sat in the waiting room asking to just be told what's going to be done to her, expecting the full story and nitty gritty details. Her eyes welled with tears but she didn't cry about it; not that there would have been anything wrong if she had a breakdown moment at the thought of another biopsy. Getting ready to go into the lab she looked at us and said she didn't want to go in alone. Who can blame her? So Brian suited up and took her in where she sat calmly on his lap and waited for the sleepy gas mask to knock her out. <br />
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She laid there patiently in recovery for hours...I truly mean hours upon hours waiting for the all clear to get mobile. When she said she had to go potty, we offered her a pull up and she refused. That little girl waited another hour plus to get the all clear so she could make her way to the bathroom. I can't imagine much of anything about today was comfortable for her and I hope her pain was managed well, but still she was so darn polite to everyone. Pleases and thank yous for all, even the nurse who came in every 15 minutes for pesky vitals. Her independence shining through insisting to feed herself once she realized that her lunch arrived while she was napping. <br />
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Olivia could be fearful of so many things but she looks forward to her blood draws and clinic appointments to say hi to "friends". She could make it a battle about taking her meds but she generally embraces them unless of course she's milking grandmas for sympathy. Instead she's generally a polite, <strike>nosy</strike> inquisitive little girl quick to laugh and voice her opinions. I love her more and more every day.Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-66218184179263177772013-10-22T11:01:00.001-05:002013-10-22T11:01:34.727-05:00Cath is Underway and DONEOoopsies, unless you're friends with me on the old FB, you likely didn't know that Miss Liv was going in today for her first annual post-transplant cath/biopsy. My apologies. This bad boy is a little more invasive than the rest, they will go in through the groin from two different sites to get vein and arterial access. This allows the staff to get tissue samples on both sides of her heart as well as checking the overall structure. Included on the checklist is the Norwood reconstructed aortic arch, the transplanted pulmonary arteries and ensure that none of the suture areas show any narrowing or hardening. <br />
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Olivia took it in true Livvy fashion. She woke up this morning at the blink of an eye and was chirping away all the ideas that she had, need to take her Doc McStuffins kit with her so she can check out patients. We got here a little early and she fussed a bit, more than usual but not shocking since she's had a nice break from all of this intervention. Height and weight look great which we already knew but it's nice to hear it again anyway. They took her back on time which is just about unheard of the land of hospitals. I love the doctor who took her into the cath lab and always feel like her pain and effects after each cath is a little bit better versus the others.<br />
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Everything so far has looked great. She woke up like a beast in recovery but was more than a little unhappy that she didn't have her own jammies on and her leg was in an immobilizer. The heart looks good but we did hear that her right femoral vein is completely occluded into her abdomen. It's not a real problem, but it is good information to know for future testing. After she was wheeled into recovery all of her fussing brought back up the apple juice which sent the nurse into a little tizzy. Aside from that though they're currently doing an echo and Miss Liv is helping out the tech by pointing out all the places she needs to run the probe over between her chest and abdomen. <br />
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Six hours of down time is a really long time for any three year old, this one is hungry and going to get a little cranky if she doesn't get some food soon. Biopsy results will likely be in tomorrow and then we should have a good game plan for future care. Till then, off to tame the beast or princess - depends on the given time or day. <br />
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<br />Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-25214989911026516632013-10-04T12:10:00.000-05:002013-10-04T12:10:01.993-05:00Parallel LinesA year ago in the midst of the trenches trying to find meds that would reverse Liv's decline - another heart transplant family was living a nightmare. They had already been where we were...waited the wait for their little girl to get a new lease on life. She did and they lived life to its fullest. But just as we were waiting and looking for a ray of hope - theirs was shattered and they had to say goodbye to their sweet little girl at just four years old. <div>
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This past year we have walked parallel lines - never to intersect but I watch over their "what life has become" and I look at the fullness of ours. Such different paths, they were where we are now and yet it's so long ago. I wake up every day thinking of their family...every.single.day. When I'm in the foulest of foul moods and can't see past my own nose, I let my mind go there and try to snap out of it. To live a life full of yearning for someone no longer here in the present would be miserable and incomplete. I see that in her mothers posts and it tears at me and speaks volumes. To wish for reunion in the after life as a family; so sad. </div>
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Our present was theirs, their present could be ours. Of course I hope these lines never intersect but one never knows and I am not so arrogant to think that it could be us someday. Until then, I try to honor their little girl daily by loving on mine just a little bit extra. </div>
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Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0tag:blogger.com,1999:blog-457189719291401386.post-49686998292905503362013-09-10T16:42:00.002-05:002013-09-10T16:42:42.904-05:00The Best Birthday Present EverHave you ever seen the show "The Best Of" on Food Network? If you asked me a little over a year ago what the best birthday present I ever got was, I'd probably dig deep and throw out the very first CD player I was given for my tenth birthday from my Uncle Giuliano along with Madonna's Immaculate Collection CD. If you knew my uncle, you'd just find the whole thought of him buying that CD comical. But it was one of my most memorable and beloved gifts. What I didn't even realize at the time and heck most days still tend to overlook and under-appreciate are my parents. They were my very first birthday present and above all else cannot be replaced with the bestest ever. <div>
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I never say thank you enough to them or am as kind or devoted to them as I should be but I'd be lost without them. They each excel in their own qualities in the parenting universe. Mom was always the disciplinarian even if she completely lost her edge the day that Olivia was born and "Precious" entered the universe. Dad has generally been my voice of reason whenever I'm particularly headstrong or impulsive in the decision making processes throughout life. I got to thinking about them in specifically this past weekend as Olivia was cutting molars, had an erratic sleep schedule and diminished appetite. What a perfectly wonderful NORMAL thing to worry about. </div>
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Most parents rightfully look forward to watching their kids get older, establish their own lives, become financially independent and experience some sort of diminished amount of worry in the day to day living. I don't think my parents were any different; it just so happened that the onset of their impending first grandchild presented with her own set of unique worries. Enter my parents: I have not really lost much sleep in the past four years because I knew that generally my parents were losing it for me! My mom was broken hearted at Olivia's HLHS diagnosis. She was ever the proud grandma as Olivia seemingly kicked three surgeries tushies. She was a complete wreck and thrown for a loop when last September we got the first bitter pill that the Fontan was likely not the last of surgeries for Miss Liv. </div>
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Throughout my entire life these two people have alternately driven me moderately crazy on a semi normal basis. Sometimes clucking at me to take care of myself, other times to be more considerate of others around me, most recently just asking about the most mundane day to day of Olivia's life. But THEY CARE and they are here for me always and forever until all breath has left their bodies. I have never had a day go by that I questioned their love or best interests for me and there's not a thing I would do differently for Olivia in the long term view from what my parents did for me. I know how lucky I am and how blessed I started this life of mine with the best set of parents I could have ever dreamed up. </div>
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Mom/Dad - this is worth about a one day pass from a token eye roll. </div>
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<br />I love you always</div>
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Anonymoushttp://www.blogger.com/profile/00676819117875581935noreply@blogger.com0