tag:blogger.com,1999:blog-8263072350544784522024-03-12T20:23:32.335-05:00Parenting With a Side of SnarkI'm a parent. I'm snarky. I cuss like a sailor. Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.comBlogger82125tag:blogger.com,1999:blog-826307235054478452.post-86814433812034909672017-03-28T17:40:00.002-05:002017-03-28T17:57:30.330-05:00Thank You<div>
One wonderful Heart Mom is collecting stories of gratitude to put in a book and present to Helena's heart surgeon. Here is our letter. It's something I've been thinking and trying to put into words for a long time now.</div>
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Dear Dr,<br />
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Because my husband and I try to see humor in everything, we bought Helena a shirt that says "Kiss it Natural Selection, I'm still here!" At the time, we just thought it was cute and funny but the more we think about it, the more we realize how true it is.<br />
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If left to nature, Helena would not be here. She was born with a TGA, VSD and pulmonary stenosis. Instead, she's 20 months old and walking and talking and people who meet her are shocked to hear everything she's gone through. If you met Helena today, you'd never know she's a Heart Warrior, that's how well she's doing.<br />
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And that's because of you. You are able to beat natural selection, and not only did you beat it in our case, but you do it on a daily basis. You are able to give us, and so many other families the gift of a child who isn't supposed to be here. It's a thought I now have on a daily basis as our family spends time together and enjoys Helena as she grows and develops. <br />
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What amazes us is that you beat nature on a regular basis. When we attended our first Heart Picnic last summer, I remember standing on the top of the hill and being in awe of how many families were there. I remember saying to my husband, "Look at this. Look at all these families. Dr. has touched the lives of every single person here, whether he operated on them or not." Those families would not be complete without you. It was such an amazing moment, and such a powerful thought. <br />
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It's not just the Heart Warriors that owe you everything - it's their entire families. Without your ability to defy nature, we wouldn't have our precious little girl and her brothers wouldn't have the baby sister they adore. Her grandparents wouldn't have their only granddaughter to spoil. Our lives would be completely different if not for you, our family would be incomplete. And that's true for every child you operate on. <br />
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Not only are you able to defy nature, but you have what a few fellow Heart Moms and I call "Dr. Magic". You are a beacon of calm and hope in a world that is full of chaos and fear. I don't know how many times I've heard families say that after meeting you they felt so much relief, and realized that it really is going to be ok. I joke with my husband that you must think I'm crazy because I'm pretty much incapable of speaking to you without breaking down sobbing (I'm even crying as I write this!) with so many emotions, but it's because you manage to not only save people's children, but you save them. You make parents feel safe, and that their child is going to be ok. Your quiet confidence helped save us, and so many others.<br />
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Thank you seems like such an inadequate phrase, but it is the best we have. So thank you Dr., for defying nature so that our family can be complete.<br />
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Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-86900741459116761762017-02-10T15:36:00.000-06:002017-02-10T15:36:25.209-06:00EmptyOne year ago today, we pulled Helena's feeding tube and engaged in what I lovingly refer to as "starvation therapy". She was losing weight, she was puking up more formula than she was keeping down and she was just miserable over all. She would gag if we put a bottle in her mouth and scream and cry when she saw us holding one. <div>
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So one year ago today, under the guidance of her cardiac nurse and her pediatrician we pulled out her NG tube and decided it was time to sink or swim. Either she'd figure out that eating is GOOD or she'd still refuse to eat orally and we'd have to explore getting a G-Tube as a more permanent feeding option. We gave her nothing via her tube, she only consumed what she took orally. We hoped that because her oral aversion was psychological, her hunger would help her overcome it. </div>
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Note the dramatic weight loss, and initial refusal to eat</div>
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For weeks I kept track of every calorie she consumed, and weighed her daily until we felt that she had overcome her oral aversion and was gaining and thriving. I have pages and pages of notes like this. For weeks I texted all day with her cardiac nurse who was leading us through this, detailing every bit of food and drop of formula that Helena consumed. For weeks we "made up" her missing calories via a feeding pump all night. Do you know how many calories 1/2 a tub of baby peaches has in it? I do.</div>
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There's a cabinet in our kitchen that held all Helena's medical supplies (or at least the downstairs supplies). Yesterday, I sat on the floor and cleaned it out. I pulled out sterile lube, NG tubes, medical tape, stethoscopes and lots of other stuff that we don't use anymore. </div>
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Luckily, there are a bajillion uses for medical tape.</div>
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I sat on the floor and just cried remembering how much we struggled, how much we cried, how much we worried and how much we begged Helena to just eat. And I cried thinking about how well she's doing now - she's trying to steal food from anyone she can and was upset that I wouldn't give her a second cookie before her dinner yesterday (I may or may not indulge her a bit too much when she asks for food :) ). She's just come so far. It's been such a long road to get to where we are today. It's hard to believe the journey we went on, and survived. </div>
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As if on cue, Helena came over to inspect the box. She picked up her NG tube and held it up to me, of course only increasing my tears. </div>
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"What's this? My arch nemesis? Oh, ok."</div>
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She has lingering effects from the tube and her hospital stays and medical experiences, but doesn't remember it. She freaks out if I try to touch her nose, she hates being restrained, she's terrified of anything even remotely medical looking (the carpet cleaning with its hoses and tanks scares her so much) and she gets super anxious in new places with new people. But that's all understandable, and we can help her with that. </div>
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We don't know when her valve will need to be replaced. We don't know if we'll ever need all those medical supplies again. But for now, and for the immediate future we have an empty cabinet.</div>
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Well, except for that candle. Who knows how long that's been in there!</div>
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Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-91744438639797617472017-01-18T10:52:00.001-06:002017-01-18T10:52:55.458-06:00The Good and The BadOur little girl turned 18 months and to celebrate she got to go to the cardiologist and developmental clinic and has a pediatrician appointment on Thursday! Yay!<br />
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First the bad news. We saw Helena's cardiologist on Monday, and while her cardiac functions are great, the artificial valve they put in her heart is starting to leak. This is not uncommon, and unfortunately there's no real way of knowing if she'll develop a leak when they put it in. Some kids do great and can keep the same valve for years and years without issue, and others (like Helena) will need her valve replaced sooner than we had hoped. We go back to her cardiologist in three months, and he'll do another echo (which was super fun - "Ok 18 month old squirmy baby who hates being restrained, you have to hold still while we put this weird gel on you and move this wand all over your chest, be good!") and we'll monitor the leakage to determine when we will need to replace the valve. It's not the best news, but she is still doing great and thriving despite this setback.<br />
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The good news is that she's finally walking! She took her first real steps about two weeks ago, and has just taken off since then. She's wobbling down the hallway, and doing her best to keep up with her brothers.<br />
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The other good news is that we got a great report card from developmental clinic. Helena has exploded developmentally, and while she is still somewhat behind on speech and gross motor skills she is scoring ahead on cognitive and fine motor skills. Her weekly team of therapists all agree that while she is behind, there is no reason she will not catch up and be completely on track, sooner rather than later. She's not really speaking yet, but she is a baby sign language pro and in the developmental world it is not uncommon for speech to come after all the motor skills. She's on 18 months, and her brain can only process so much growth and change at once - she's hyper focused on the physical development right now that she's letting the verbal go for the moment. As she becomes a better walker, we expect a verbal explosion much like the physical one we've seen so far.<br />
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For perspective, she scored 8 months old on her fine motor skills at her one year developmental clinic and at her 18 month appointment she scored 20 months. For her cognitive play skills, she scored 10 months at her 12 month appointment and 19 months now. She's developed much more than 6 months in age in 6 months of time.<br />
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What is also great news is that Helena is doing wonderful with gaining weight and growing. She's in the 45th percentile for both height and weight, which is amazing considering at her 6 month developmental clinic she was in the 6th percentile for weight. in a year she's come so much, and is finally healthy and growing appropriately for her age.<br />
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She's come so far, we're so proud of her for all her hard work and progress. And we're so proud of our boys who adore their sister and love to "help" with her therapies and want the best for her.Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-48989076641221183002016-10-19T19:57:00.001-05:002016-10-19T19:57:51.717-05:0040Helena had her 15 month well baby checkup today.<br />
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She is in the 40th percentile for weight. Her pediatrician said he's no longer worried about her weight, and said we can make the switch to milk from formula once we use up what we have left.<br />
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Take a moment, and look at that growth chart. It's also missing time she was in the 3rd percentile. Not long ago, she was barely on the growth chart and today she's in the 40th percentile. She hasn't been that high since she was born. This is the highest percentile she's been in since birth.<br />
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For Helena to get into the 40th percentile and both her cardiologist (who I sent the pic of her chart to immediately) and her pediatrician to say they're no longer concerned with her weight... Well, it's amazing.<br />
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The struggles we endured to get her here were tremendous. Months of NG tubes, oral aversion, puking... I would beg her to just eat. I didn't even care what - candy, juice, sugar, cookies.. Anyything. I would have gladly given her a bottle of Kool-Aid if she would have drank it. You take for granted that your kid will want to eat, to have to face the horrible reality that putting anything in her mouth makes her gag is terrifying.<br />
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Just back in March, she was fully dependent on the NG tube for all of her feedings, and was barely on the growth chart. She was puking up more food than she was keeping down. I was obsessively weighing her on a daily basis, hoping for any increase, no matter how small. I would celebrate even a one ounce gain, but more days I would stress about a loss. Even just maintaining her weight was a sort of victory. Our days were stuck inside, covered in puke and we were all miserable. I'd have to restrain her and shove a tube up her nose multiple times a day, only to have her pull it out, or worse, puke it up. As awful as it was for us, I can't even imagine how horrible she felt.<br />
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I honestly didn't believe we'd get to where we are today. We were weeks away from setting up a g-tube surgery when Helena finally was able to eat orally. After her surgery, I was convinced that she would regress back to needing the NG tube, but she surprised me. When her nurses told us that she took 6 ounces of Pedialyte from a bottle after her surgery I cried with relief.<br />
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I cried with relief again today when her pediatrician told me she's in the 40th percentile. It's just something I never thought would happen. I almost didn't even let myself think that it could happen so I wouldn't be upset when it didn't, if that makes sense.<br />
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Today, Helena is thriving. She'll eat anything we put in front of her, and will even try to steal food from us. She's not only eating orally, she's enjoying eating. She's gaining weight, and she's progressed so much. She's like a different baby than the one we knew just a few months ago.<br />
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She's cruising, sitting, crawling, and is getting closer to walking every day. She's learning and using more and more baby sign language, and is saying "da-da" and "ma-ma". She's curious and loves exploring her world and trying new things.<br />
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<iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1XhQVYGEgkmXARQASsrFYJEbfOiQb6J7Yb5OROAFaQGAjTzGES3bLrnSxD9H7b1jieL4lXkv08qR3_TQen_Iw4jY6R6mI2wbsmPf909kj5F-yBGEiTon_uKkzz8U4Fl2H6JWZnYD91eA/s0/20161015_170055.mp4" src="https://www.youtube.com/embed/6343341302366058530?feature=player_embedded" frameborder="0" allowfullscreen></iframe></div>
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New things like bounce house slides</div>
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I'm still going to weigh her on a fairly regular basis, and I'm sure I'll always be concerned that she's not gaining enough, but for now, she's ok. She's ok. We did it. We got her to a place where she's eating successfully and is able to not only maintain, but increase her weight. We got her to place where she's not just surviving, she's thriving and loving life. She's just so happy, and we can't even express how much that means.</div>
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<br />Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-71843697189211918502016-07-14T00:02:00.002-05:002016-07-14T00:04:02.731-05:00The Difference a Year MakesA year ago, I went in for an NST and ending up being induced and having our special little girl.<br />
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A year ago, we didn't know what would happen to Helena when she was born. We didn't know if she'd be born blue, if she'd be able to breathe on her own, or if she'd need surgery right away.<br />
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A year ago, we had no idea we'd spend months battling feeding tubes and reflux and fighting for every ounce our little girl gained.<br />
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A year ago, I didn't know what oral aversion is.<br />
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A year ago, I never thought I'd be an expert at dropping an NG tube or programming a feeding pump.<br />
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A year ago, we didn't know how to work a pulse-ox machine, or how to read an EKG, or what a normal baby's blood pressure should be.<br />
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A year ago, we didn't realize that not only would we be getting speech therapy, but also physical and developmental therapy to help our little girl catch up.<br />
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A year ago, we never could have imagined how loving, careful, understanding and adaptable our boys could be. Or just how much they too would love their little sister.<br />
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A year ago, we weren't even really sure what was wrong with Helena's heart.<br />
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A year ago, we didn't know when she'd have to have corrective surgery, or even what that corrective surgery would be.<br />
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A year ago, we didn't know how much love, support and care all of our friends and family would shower on us while we went through one of the hardest times in our lives.<br />
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A year ago, we had no idea how much we'd come to love this little girl, and just how scary it would be to hand her over to her medical team so they could fix her heart.<br />
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A year ago, we had no idea how incredibly grateful we would be to the doctors, nurses and everyone else who helped fix her broken heart and get her to where she is today.<br />
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A year ago, I couldn't even think about Helena's first birthday party because I was so scared she wouldn't be here for us to celebrate it.<br />
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A year ago, we weren't able to hold our new baby.<br />
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A year ago, we didn't know all the challenges this little warrior would face, and eventually overcome.</div>
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A year ago, we didn't know how long she'd be in the hospital. We didn't know we were looking at a month-long stay.<br />
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A year ago, she was sedated and intubated while we figured out what our gameplan for her would be.<br />
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Today, Helena turns a year old.</div>
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Today, Helena is babbling like crazy.</div>
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Today, Helena is army crawling anywhere she can.</div>
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Today, Helena is eating not only her formula, but real people food too - and <i>loving</i> it!</div>
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Today, we no longer have a feeding pump or a pulse-ox machine in our house - because we don't need them.</div>
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Today, Helena is making huge progress in all areas of her development and no one has any concerns that she will one day soon be caught up to her peers.</div>
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Today, her brothers love her even more than they did when they first met her.</div>
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Today, Helena has a mended heart.</div>
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Today, we cannot begin to express our gratitude to everyone in our lives who showed their care, concern and support during the last year. Without it, this hard year would have been even harder.</div>
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Today, our medical team is more like family. Our gratitude to them knows no bounds and we can't imagine not having them in our lives.</div>
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Today, Helena is snuggling and loving and wants to be the center of everyone's attention and love - and she often is.</div>
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Today, she is happier and healthier than I could have ever imagined.</div>
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Today, we are home as a family of five.</div>
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And today, we celebrate this little girl's life.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2QevH90vRr6o5vfEr0Gyu7vJ-E1zzXIWOiJRDEa3HsWE6qkMeK0yqROzn9b9ZvOP2UxqA4pTVGNUYELg7qbIE5Mz2KZwIlnreHRBq1V3bAXxaXQc4zFCJpcTywoEXJ__zuZIes74yH5U/s1600/helena+water+bottle.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-right: 1em; text-align: left;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2QevH90vRr6o5vfEr0Gyu7vJ-E1zzXIWOiJRDEa3HsWE6qkMeK0yqROzn9b9ZvOP2UxqA4pTVGNUYELg7qbIE5Mz2KZwIlnreHRBq1V3bAXxaXQc4zFCJpcTywoEXJ__zuZIes74yH5U/s320/helena+water+bottle.jpg" width="176" /></a></div>
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Happy Birthday Sweet Girl, you are so very loved.</div>
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Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-2588148420135694982016-04-05T09:53:00.001-05:002016-04-05T09:53:08.720-05:00Adios Tubie!Goodbye NG tube!!<br />
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As of this morning, Helena is officially gaining weight even without the night time NG feedings! We've gotten the all clear from her cardiac nurse, her pediatrician and her nutritionist to cut it out completely! It's amazing to think that in less than two months she's gone from completely NG tube dependent to totally off it. It's been a long, stressful two months full of scales and weight checks and food logs, but we've done it!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp1EhposIlXEhPXpek2nUaJ59UENF5XTdtkh59UPPuTLUt9iQY3Z1LDwRIK294rhWipb9puJNazIanJEKlqPr_gr-Jp5-nz4aqvE70ptdj0-cK6Gzdb4WJCGM_00UbJG1SC1UYuxeKSyY/s1600/Facebook-20160405-091517.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp1EhposIlXEhPXpek2nUaJ59UENF5XTdtkh59UPPuTLUt9iQY3Z1LDwRIK294rhWipb9puJNazIanJEKlqPr_gr-Jp5-nz4aqvE70ptdj0-cK6Gzdb4WJCGM_00UbJG1SC1UYuxeKSyY/s320/Facebook-20160405-091517.jpg" width="176" /></a></div>
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She's so happy without that damn tubie!</div>
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I can't even express how happy and excited I am about this. It was my long term, super reach, thought it was unattainable dream goal to have her eating orally 100% by surgery and we've done it! I honestly didn't think it would happen, but with the care and dedication of our team we did it and we're just all so happy!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbYSyusgth16EgbSfbJRfGfWgyFA5BEy3u9C5FEWV4UcqxuB9-luLHNwqrKLrYwx-J7gSOUpg_nRVF4q5uebZOtTVCCLI78iKJzbM7mLDcBf8RhEn9JOx-WwOGW5fdAi_QJxkemM3W98s/s1600/Facebook-20160405-091327.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbYSyusgth16EgbSfbJRfGfWgyFA5BEy3u9C5FEWV4UcqxuB9-luLHNwqrKLrYwx-J7gSOUpg_nRVF4q5uebZOtTVCCLI78iKJzbM7mLDcBf8RhEn9JOx-WwOGW5fdAi_QJxkemM3W98s/s320/Facebook-20160405-091327.jpg" width="176" /></a></div>
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Celebratory mohawk. As you do.</div>
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Everyone tells me that if a baby goes into surgery eating orally, they go home eating orally; but because I'm weirdly superstitious about these things I'm not packing up her NG supplies (which of course, I just reordered before we started the no NG at night experiment) until we're home and doing well. I don't want to jinx our progress, but I'm optimistic that we won't be needing any of it anymore.</div>
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Since coming off the NG tube Helena is a completely different baby - she's rolling all over, sitting up better, babbling more and more each day and is just so much happier. She's curious and wants to explore her environment and is getting frustrated that she's limited by her low muscle tone and inability to crawl and sit up on her own.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEido5fa1nss8wVRBN956nU1-8QCW1eSF6v_XiWPKKknNmfwWqoMHJwrUrKe_ouIeeTIBmYdBt2D2K4It79zVzaPclMCQNIis74lwZOKLoMPzx5a7OVEu2NViie8eQRxC5rUoE3WFkrvQME/s1600/Facebook-20160405-091404.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEido5fa1nss8wVRBN956nU1-8QCW1eSF6v_XiWPKKknNmfwWqoMHJwrUrKe_ouIeeTIBmYdBt2D2K4It79zVzaPclMCQNIis74lwZOKLoMPzx5a7OVEu2NViie8eQRxC5rUoE3WFkrvQME/s320/Facebook-20160405-091404.jpg" width="176" /></a></div>
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She still manages though. </div>
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"What is this thing on my counter?"</div>
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"A cord! A cord!"</div>
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Why do babies all have a fascination with cords? Or is that just ours because my Husband is a giant electronics nerd/hoarder?</div>
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It's hard to believe by looking at her that she's going in for major open heart surgery in less than a week. She looks great and if you didn't know better you probably wouldn't guess there was anything wrong with her. Her oxygen levels have been in the mid 80's, which is right where they should be for her. While she needs the corrective surgery, she doesn't <i>need</i> it right now. We're choosing to do it now because she's doing so well.</div>
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Monitoring her O2 levels has become a bit more challenging...</div>
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For me, this is both good and bad. It's good because she's strong and healthy and bigger and in a good place right now to undergo such a serious operation and hopefully bounce back quickly. Because she's doing so well we're all hoping it will lead to an easier recovery.</div>
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It's bad because she's doing so well! Of course after surgery she'll be on restricted activity (as much as you can restrict a 9 month old) and we do expect some regression which sucks because she is doing so well right now, and developing new skills every day. That most likely won't be the case for a few weeks post-op, which is totally normal of course, just unfortunate.</div>
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So until Monday (Surgery Day), we're trying to pack on the pounds, and just enjoy our "normal" as much as possible. </div>
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Yes, I'm kinda freaking out and emotional about the whole thing, but no, I do not want to talk about it. I appreciate all the offers and support, but I prefer to live in denial until it's actually happening, thank you very much. </div>
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It's funny how differently we handle things - I think this week is so much worse because my imagination runs wild with all the horrible things that can happen and I don't like waiting or the unknown and I'm a nervous anxious mess. My Husband thinks next week will be much harder when we're in the hospital dealing with whatever might happen, but for me, that's easier. I can deal with what's happening, wondering what <i>will</i> happen is so much worse for me. </div>
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What's also funny is that My Husband wants to know everything and I want to know nothing. We met with her surgeon again, and he went through the surgery in detail. This brought My Husband comfort. It totally freaked me out. But on the plus side, this was the first time I've met with our surgeon and not burst into tears like an emotional lunatic so that was positive. I managed to hold it in until we were in the elevator this time. I swear, there is something about that man that both brings me comfort that he'll take good care of her and yet makes me sob uncontrollably. He probably thinks I'm nuts.</div>
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We have Pre-Op on Thursday where she'll go through a physical, blood draws, EKG's, echo's and probably more. She's going to hate it, but it's necessary. Then Monday is our big day. </div>
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I'm not a hugely religious person, but as the saying goes, "There are no atheists in a foxhole" and well, we're in a pretty big fucking foxhole right now. I'm reaching out to any and all options that might play a role in helping our little girl through this. On Monday, any thoughts, prayers, positive vibes that you want to send our way would be greatly appreciated.</div>
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<br />Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-44881793003021888352016-03-23T13:10:00.000-05:002016-03-23T13:10:16.810-05:00Too Tired for TargetSometimes, when you feel like you kinda got your shit together your kids will make sure to remind you that you don't. Like yesterday.<br />
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My Guys are usually very well behaved when we're in a store. We've never had to abandon a shopping trip due to their behavior... Until yesterday.<br />
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My Guys are in school (preschool and Pre-K), and normally they get done at noon. This month they're in an enrichment cooking class that has them going until 2:00. This is a long day for them, and they are more tired than usual when they get home. I'm not making excuses for shit behavior, I'm just setting the stage.<br />
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So yesterday, I had told them that while the babysitter was here watching Helena, I'd take them to Target to buy some Easter decorations. We're hosting Easter at our house this year, which was a bit of a surprise, but it means that we need to decorate for the festivities rather than just leaving my husband's birthday decorations up until My Little Guy's birthday.<br />
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My Guys come home from school, and play outside for a bit until the babysitter arrives. I then load them in the car and everything seems normal. We get to Target. My Big Guy keeps trying to go in the out door, and I have to yell at him to stop because he's going to get hurt when someone is actually exiting and it swings open. This is unusual behavior for him.<br />
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We get inside and he asks if he can ride in the cart. I'm like, dude, no. You're almost 6. Walk your ass around the damn store. He whines that he's tired. Tough it out, you're not riding in the damn cart.<br />
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We make our way over to the Easter section after grabbing a few other items and as we get into the aisle, My Little Guy immediately loses his shit and starts crying. I ask him what's wrong, and he points at this horrible pre-made Paw Patrol Easter basket and says he wants it but he knows I won't buy it for him (he's correct).<br />
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Let's just pause here for a moment to discuss how awful fucking Paw Patrol is. I hate that shit. First of all, what the crap is wrong with all those people in that town that when they have an issue their first thought is to call that weird kid who doesn't seem to have any parents and his fucking DOGS?? That just doesn't make sense. Everything about the show is annoying. Everything. I want to punch that Ryder kid right it the face after I mess up his stupid hair. Secondly, with the bazillion items of merchandising they have created for this stupid show, would it kill them to put Skye on any of it? I've seen her on some of the "girl" toys and clothes but she's almost always missing from any of the boy stuff. My Guys have, on more than one occasion asked why she's not on their stuff and I have no good answer. I mean, I'm not one to get all riled up over feminist issues, but why do you have to cut the girl dog out Nickelodeon? That's crappy. And another reason I hate Paw Patrol.<br />
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Ok, back to the story. So My Little Guy is losing his shit over this stupid Paw Patrol Easter basket and while I'm talking to him about this, My Big Guy takes the opportunity to just straight up lay down on the floor in the middle of the aisle at Target. You know, as you do. I calm My Little Guy down and turn and see this nonsense and ask My Big Guy what he's doing. He replies that he's tired, and I won't let him ride in the cart. Yes. It's clearly my fault that you're laying down in the middle of Target. Sigh. I tell him to get up and that's it. We're done.<br />
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I fully abandoned the cart in the aisle, took them each by the hand and walked out of that Target. I get them in the car and basically ask them what the crap was going on in there. They really didn't have any answers other than saying how tired they are, and asking to go home to lay down. I mean, ok, I guess if you're so tired that laying down on the nasty-ass floor of Target seems like a valid option you're not just saying that. Clearly this trip to Target was a mistake as we were totally THAT family with the melting down kids walking towards the door.<br />
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I got them home, showered and fed and they were both half asleep on the couch before 7:00. They weren't lying.<br />
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So today, while they're at Tae Kwon Do, I'm off to the party store to hopefully buy some damn Easter decorations in peace. And without anyone laying on the floor.Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-25551464958908358052016-03-11T09:25:00.001-06:002016-03-11T09:25:17.372-06:00SurgeryI've sat down and tried to write this update about 10 times now and it's just not coming out the way I want it to, so I'm just spewing it out and hitting publish and being done with it.<br />
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We've scheduled Helena's corrective open heart surgery. She will go in for a pre-op check on April 7th, and then on Monday, April 11th she will go in for her Rastelli procedure (do your own damn Googling).<br />
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We're in a great place right now where she's getting about 90% of the calories she needs orally, and we're still making up the difference using her NG tube and feeding pump at night. We're still giving her a ton of food at night because eve with her weight gain (2 lbs in a month!) she's still underweight, and now with surgery scheduled we want her to be as fat as possible before then.<br />
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She's healthy, she's happy... You'd never know there was anything wrong with her if you saw her. She's smiley and has started rolling and is kinda sitting up on her own a bit. She's doing great. That's part of the reason we scheduled the surgery - she's healthy and strong right now, and she's a good size so let's get it over with.<br />
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Sitter.</div>
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Eater.</div>
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As terrified as I am, her medical team is excited. They all think she's going to do great and come out of surgery even better than she is now. I take comfort in their confidence but I'm still an emotional wreck just thinking about it.<br />
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As my husband said, this time around will be both much harder and much easier.<br />
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It will be easier because we know her. She's tough. She's feisty. She's a fighter. She's handled every challenge beautifully and done better than anyone had hoped she would. Most babies need their corrective surgery well before six months. Helena will be almost 8 months old when she has hers, and even then she doesn't <i>need</i> it at that time as much as we're choosing to do it at that time. Her oxygen levels are still great (granted she hasn't been growing so she hasn't outgrown her shunt, but still). She's battled a couple colds like a champ. She's a tough cookie.<br />
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It will be harder because we know her. When she went in for her shunt surgery she was in the crib in the NICU and we had hardly held her, and she was only two weeks old. Of course we loved her and of course we were scared and worried but now that she's 7 months old, we KNOW her. We know her personality. She's not just a tiny little newborn blob, she's Helena. Handing over Helena for open heart surgery is almost unbearable, and yet it has to be done. She needs to be fixed.<br />
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So until April 11th we're just doing business as usual. We've planned My Little Guy's 4th birthday party (the surgery team was wonderful enough to accommodate us in waiting until after his birthday to do Helena's surgery so that he can have a normal birthday), we're attempting to get as many calories in Helena every day we can, and we're working with our therapy team to get her as strong and close to her age development-wise as possible, knowing that she will probably have some regression post-op. She will also have movement restrictions on her until her sternum heals again, so we're doing as much as we can now knowing we're looking at a few miserable weeks of healing down the line where she won't be allowed to move around the way she has been.<br />
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It's scary, but at the same time I'm glad that it's scheduled and that it'll be done and we can maybe have a semi-normal summer. As much as I'd love to put off surgery forever, getting it over with is good too.<br />
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We thank you all again for all the love and support and your kind words, thoughts and prayers. We're so lucky to have such amazing and understanding friends and family and we truly appreciate it all.Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com2tag:blogger.com,1999:blog-826307235054478452.post-81117930737513754452016-02-16T10:18:00.001-06:002016-02-16T10:18:19.965-06:00Foods!<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIo3nwcjl-RQPdgE12AjrwNE2s1KIPHja18Ch0EwG8-ePf39gqYNY5DiGt6OIspqEhCnwV7AjMSIVEf9_AgyeUUDO40BC_uA45aHUfTGHgT6NUsbq8YLU2czz8aFEIZzX4XkT2Q85bZk8/s1600/Helena+2.13.16.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIo3nwcjl-RQPdgE12AjrwNE2s1KIPHja18Ch0EwG8-ePf39gqYNY5DiGt6OIspqEhCnwV7AjMSIVEf9_AgyeUUDO40BC_uA45aHUfTGHgT6NUsbq8YLU2czz8aFEIZzX4XkT2Q85bZk8/s320/Helena+2.13.16.jpg" width="176" /></a></div>
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Look at this girl with no tubie!</div>
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So we've started doing a new thing with Helena to help her get off that stupid NG tube. We pull the tube during the day, and at night we put it in and using our fancy new feeding pump, we give her a ton of food super slowly throughout the night to make up for what she doesn't get during the day. It's been a rough couple of days adjusting to this new routine, but she's now taking 1-3 oz of formula at every feeding and eating baby food three times a day.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLbWk2s59zEJTlwFRnYq1JH-9pHhgOADgm26QR2gszwjSoudwHGY1fHtjmfXkbqhLTESFnevJID6XdioEkrkSf1_OLyHSo8xir0R9NFYUCSjgwd9lFwT4C5kZJIrZT7D-4FXbOBnkoGqw/s1600/helena+baby+food.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLbWk2s59zEJTlwFRnYq1JH-9pHhgOADgm26QR2gszwjSoudwHGY1fHtjmfXkbqhLTESFnevJID6XdioEkrkSf1_OLyHSo8xir0R9NFYUCSjgwd9lFwT4C5kZJIrZT7D-4FXbOBnkoGqw/s320/helena+baby+food.jpg" width="176" /></a></div>
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Mmmmm, apples</div>
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After a month of no weight gain, and pretty much puking up half of every meal we gave her through the tube we decided something needed to change. So under the guidance of her pediatrician and cardiologist, we engaged in what I lovingly referred to as "Starvation Therapy". We pulled the tube out and offered her the bottle and the food and nothing else for 36 hours. It sucked. She lost a ton of weight, she was cranky and hungry and miserable and it felt awful to know that she wasn't happy. BUT. But at the end of the day she took 3.5 oz from her bottle. She finally made the connection that hey, this bottle isn't going to hurt me, it's going to give me food and make my tummy feel good. I like this. She finally made the connection that the spoon isn't scary, it's got delicious baby food on it (gross) and it tastes better than my formula and also fills me up. Once she made that connection we started doing the tube/pump at night and she's been gaining weight ever since.</div>
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In less than a week we went from taking nothing orally to getting a fair amount of formula in her, and eating three "meals" a day. In less than a week we went from her crying and turning away from the bottle/spoon to her opening her mouth in anticipation of them.</div>
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Without that tube in, she's a new baby. She's so much happier and vocal and moving more. And, best of all, she hasn't puked once since we started this. I'm doing like 1/4 the amount of laundry I was doing before we started. </div>
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She's still getting the majority of her nutrition from the feeding tube at night, but she's making great progress in taking more and more orally. And we're so happy to see her pretty little face without that tube all day.</div>
Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-63314777007865546112016-02-02T23:25:00.002-06:002016-02-02T23:25:23.336-06:00CHD Awareness Month 1 & 2February is Congenital Heart Defect Awareness Month. I'm sure I've spammed you enough that now you know that 1 in 110 babies is born with a heart defect, making it the most common birth defect.<br />
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I didn't know that until Helena was diagnosed, so I'm guessing you didn't either.<br />
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In honor of CHD Awareness Month, I'm going to post following the <a href="https://www.facebook.com/mlhchicago/?fref=ts" target="_blank">Mended Little Hearts</a> prompts - one for each day.<br />
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Today I'll cover February 1st (Diagnosis) and February 2nd (Surgery/Meds/Intervention).<br />
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<b>Diagnosis</b>. Oy. Well, as I've written about before, Helena's diagnosis came at our 20 week ultrasound. We went in assuming that everything was fine, and already knew she was a girl. When the ultrasound tech goes from super chatty to super quiet and spends a great deal of time on your baby's heart you know something is up. She left the room, saying that the doctor would be in shortly to go over everything with us. When the doctor came in, he immediately told us that there was something wrong with the baby's heart, but that he wasn't sure what. Luckily for us, the pediatric cardiologist was at the hospital that day and agreed with meet with us immediately. He took a look and said he wasn't sure what was going on because she was small and moving too much. When we went back four weeks later, he confirmed that she does have a TGA with pulmonary stenosis, and a VSD. We've also learned that her coronary artery is in a weird place, because why not?<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimyzAeqzu2GE-BinuZwFSwR4NVKKKwSbarMkDKY-IYjSn6_k9xvka1cEDXVCQ0uWAIqaiZD-rfCeYBdo3CdLoV8XXrvv6jVJiJRCVnwzDaxYVWP9RBnwWrpjqLTY0bSyiyHraPWGJrin4/s1600/CHD+Diagnosis.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimyzAeqzu2GE-BinuZwFSwR4NVKKKwSbarMkDKY-IYjSn6_k9xvka1cEDXVCQ0uWAIqaiZD-rfCeYBdo3CdLoV8XXrvv6jVJiJRCVnwzDaxYVWP9RBnwWrpjqLTY0bSyiyHraPWGJrin4/s320/CHD+Diagnosis.jpg" width="320" /></a></div>
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What's weird about getting Helena's diagnosis is that neither My Husband nor I were shocked by it. I cried. We were upset and sad and scared, but we weirdly weren't shocked by it. I'm not sure if it's because that's just how we are - we see the hand we're dealt and we immediately figure out how to play it, or if there was something else going on. But we weren't shocked, which is weird.</div>
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I feel lucky that we did get a diagnosis so early. We were able to monitor her throughout my pregnancy and make sure she was growing and developing well. We were able to switch hospitals so that I could deliver at the hospital with the best pediatric heart team in the are. We knew. We knew she had a serious defect. We knew she wouldn't be coming home with us. We knew there was a lengthy NICU stay ahead of her. We knew it was going to be rough. We had time to come to grips with the road ahead of us, and to prepare ourselves and the boys for it. We were able to get our support network in place. We were so very lucky.</div>
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We were lucky that we had a great ultrasound tech, and a doctor who realized something was wrong. We were lucky that our amazing cardiologist was on the floor that day and that because he's amazing he agreed to take time out of his day to meet us when we didn't have an appointment. We were lucky to live 30 minutes from the best hospital for Helena. We were just so very lucky. I couldn't imagine thinking everything was fine and delivering her and wondering why she was turning blue. It was scary enough as it was, with us knowing as much as we did. I can't imagine the parents who aren't lucky enough to find out about their baby's heart defect before birth.</div>
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<b>Surgery/Meds/Intervention.</b> Sometimes the though of everything Helena has gone through in her little life blindsides me and I just completely lose it. No baby who's only six month old should have had to be put under and cut open. No baby should have to get scared anytime she's naked on a table with a stranger because she already knows bad things happen to her when that's the situation. No baby should ever have to suffer pain, or be scared the way she has been. And it's not over. We still have her big corrective surgery ahead of us. No adult should have to suffer through that - let alone a little baby.</div>
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Helena has already had two cardiac cath procedures, and one surgery in which they did have to open her up and break her sternum to put in a shunt. She's been intubated for weeks at a time and had IV lines put in both her little legs. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2r9g_CBpS3w0X4z7ILy5n-__iF05v3DDb1N6oKirTIcpbWSNtyIPRqBm4CQEYMUQNEA3IEvhT55oPARdddm8wqtfytN2nHJO4JM1X129nrNb6ICYSp7GXVCfl3eEBhEXqq3XnV70jzWU/s1600/post+op.jpg" imageanchor="1"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2r9g_CBpS3w0X4z7ILy5n-__iF05v3DDb1N6oKirTIcpbWSNtyIPRqBm4CQEYMUQNEA3IEvhT55oPARdddm8wqtfytN2nHJO4JM1X129nrNb6ICYSp7GXVCfl3eEBhEXqq3XnV70jzWU/s320/post+op.jpg" width="176" /></a></div>
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This is Helena 2 days after her shunt surgery, so she's just over two weeks old here. I wasn't allowed to see her the day after it because I came down with a crippling stomach flu the night after her surgery.</div>
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Helena in recovery after her most recent cardica cath. The owie on her cheek is from the tubie tape.</div>
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Helena isn't actually on many meds, considering what she's got going on. She's on Lasix, a BP med, and baby aspirin for her heart. Throw in some reflux meds and that's it. The nice thing about her NG tube is that I don't have to battler her to get her to take the meds. That's one thing I'm not looking forward to when she finally does start eating orally.</div>
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When she does go back in for corrective surgery, we're looking at about a two week hospital stay if all goes well. Then another 6-8 weeks of restricted activity while her sternum heals again. </div>
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It's amazing how quickly something becomes "normal". It's normal for us now to have to resinert her NG tube. It's normal to have to give meds four different times during the day (they can't all be given at the same time because some interact with others badly). It's normal to take her oxygen levels a couple times a day. It's normal to do daily weight checks. It's normal to constantly be checking her coloring. This is just what our life with Helena is like. This is our new normal. This is what normal is like with a Heart Warrior.</div>
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So now I'm going to ask you for money cause that's how I roll. </div>
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https://www.crowdrise.com/Corri-roarnrunvirtualrace</div>
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Go there. Give me money so that more research can be done to figure out what causes CHD's, and to help other families who aren't are lucky as we were with our diagnosis. Go help our Heart Warriors.</div>
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Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-58380645686879500712016-01-10T11:24:00.000-06:002016-01-10T12:50:09.018-06:00Update 1.10.16I haven't updated in awhile and I'm sure you're all just dying to know what's been going on over here. We're just so fascinating, I know.<br />
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We all survived a variety of colds over the holidays that of course caused My Little Guy to wind up with an ear infection. Helena caught them too, but since she is a fierce warrior baby she handled them fine. She likes to do this thing where I'm looking at her and for whatever reason (lighting, my own paranoia, whatever) I feel like her coloring is off so I rush over and hook her up to her oxygen monitor and it spits out... 91. Ok, sure, yeah, Mommy is crazy. Good then. This exact scenario has happened at least 4 times now.<br />
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We were supposed to get the cardiac cath back in December, but Helena was in the thick of a cold and at that point and the nurses and doctors didn't want to risk anything by doing it while she wasn't 100% well. Her pediatrician and I felt that asking for 100% health during cold and flu season was a stretch (he cleared her for the cath saying her lungs were clear and her congestion was all in her head and that even as a cardiac baby she looked better than some of his normal patients with colds), but agreed that unnecessary risk was a bad idea.<br />
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The cath was rescheduled and we all hoped that she would be healthy for it this time around.<br />
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The issue was that in addition to having her NG tube in, she's also teething so she's pretty much in a constant state of congestion. It's hard to tell if it's from a cold, or the NG, or the teething or what percentage of those three things is causing it. Even though our cardiac nurse told us the cath wasn't urgent, we still wanted to get it over with. And it was going to give them the information they needed to help figure out the timing of her corrective surgery. As a planner, I <i>needed</i> that information.<br />
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As it worked out, My Little Guy's ear infection wasn't better after his 10 days of drugs, so the day before Helena's cath I took him into the pediatrician and brought her in for a quick once over. My Little Guy got another round of drugs (and it's sadly looking like he might need a third - poor guy), and Helena got the all clear for the cath. It did seem to make a difference when the cath nurses called that I was able to say that she just saw her pediatrician who said it's more teething and the NG than a cold and they said the cath is on.<br />
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So we woke up at 4:45 that morning, after not much sleep and brought her in. It's a horrible experience to say the least, but it's nothing compared to what we'll go through for her corrective surgery. Having to hand someone your baby and watch them walk away, knowing they're going to do things to her that no baby should ever have to have done is heartbreaking. You're literally putting the life of your child in someone else's hands. It's a feeling I wish no one ever had to feel.<br />
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Luckily the catheter procedure was only about 2 hours, so the waiting wasn't too bad at all. The doctor came out and said everything went well, she did great, and they got good pictures and video and information. We waited a bit longer while they woke her up and extubated her and brought her back to the recovery room.<br />
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When we finally got to see her she was PISSED. She was starving (no food since late the night before per surgery instructions) and uncomfortable and scared. Some snuggles and food and loves and she was out cold. Helena spent most of her time in recovery sleeping, but did great. She did so great in fact that they told us we could go home that evening. When we had scheduled the cath they told us that with the little ones they usually keep them overnight for observation just to be safe, but they felt she was fine and sent us home. I was very happy to not have to spend the night on that horrible hospital couch-bed thing with a constant parade of nurses coming in. I did end up sleeping on our couch since Helena fell asleep in her downstairs bed and I didn't dare move her, but as I told my husband - our couch was significantly more comfortable than the hospital one.<br />
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The next day Helena was more back to her usual self. She was still a little fussy, and a little needy but she was more smiley and slept less. By the second day after the procedure she was totally herself again.<br />
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Unfortunately she's caught another cold, but she's handling it fine so far. She has a six month checkup this week any way, so she'll see her pediatrician and make sure her lungs are clear and everything but I suspect they are.<br />
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We met with her surgeon who once again went over the two surgery options for Helena. Because she not only has TGA, a VSD, and a pulmonary stenosis, but one of her coronary arteries is in a weird place, he feels that one procedure might be safer but won't know for sure until he gets in there and sees everything. That's sort of what he had said before, so that wasn't a surprise. What was interesting is that he told us that even if she has to have the surgery requiring artificial parts (and therefore more surgeries down the line to replace them as she grows), they're hoping that in the next 10 years or so they'll be able to create the parts she needs using stem cells (in all the chaos of her diagnosis we forgot to bank her cord blood, but we did bank My Little Guy's so they might even be able to use that) and then since they'd be biological they wouldn't need to be replaced as they'd grow with her. That sounded super cool.<br />
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He also said that because her oxygen levels are doing so well and she is growing, there's no need to rush into surgery. He said let's wait at least another 2-3 months and keep seeing our cardiologist and when her levels start dipping a bit, that's when we'll start thinking about scheduling her corrective surgery. It was a relief knowing that she's doing well, and there's no need to rush anything. The bigger she is the easier the surgery will be, and the easier her recovery will be. He told us that even after this big corrective surgery she should only spend like 2 weeks in the hospital which is amazing considering what they'll have to do to her. Babies heal fast.<br />
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So for now we're just doing what we're doing since it seems to be working. She's teething like crazy and putting everything in her mouth which is huge progress in getting her off the NG tube. She's still not taking a bottle, but I did find one that she tolerates in her mouth more than anything else so we've been working on that. I find it amusing that the whole deal with this new bottle is that it's supposed to be for breastfed babies who refuse any other bottles, but Helena has literally never been breastfed and yet this is the bottle she has decided to like.<br />
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We've also started playing around with solids, or "goo food" as My Boys call it. She ate half a container of carrots over two meals the other day, so that's huge progress.<br />
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I think that's it. The rest of the family is doing well. We appreciate all the care and concern and thoughts and prayers from everyone. We are very lucky to have you all in our lives.Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-32100570210020242962015-11-19T10:27:00.002-06:002015-11-19T10:27:32.232-06:00Update 11.19.15Things here are going well.<br />
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Helena finally kicked that horrible cold and has been putting on weight like a champ. We had a cardiologist appointment on Monday, and he was very happy to see how much weight she's gained. Her cardiac functions are all doing what they're supposed to do. Her doctor did an echo on her and said everything looks great. They were planning on discussing her at the big cardiac meeting last night, but the general thought is that we'll do a cardiac catheter procedure in December to get a better idea of what exactly is going on in her heart. Then we'll hold off on the big corrective surgery until January or February. She's doing really well and putting on weight so they want to wait as long as possible to do the surgery. It's easier for everyone involved if she's bigger and stronger.<br />
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We also saw Helena's pediatrician. That appointment basically revolved around her reflux. We felt it had gotten a lot worse, and I wanted to know why and what we can do to fix it. Turns out that in all babies, not just cardiac ones on NG tubes, reflux peaks around 4 months. Which is how old Helena is. They start moving around more, which stirs up the reflux crap in their tummies and it comes up more. Her pediatrician said because she is gaining weight so well (she went from the 5th percentile at her 2 month visit to the 25th at her 4 month - that's 4 lbs she's gained in 2 months!) it's clearly not bothering her THAT much so he's not changing anything. Her job right now is to grow as much as possible, and she's doing that well so we're not rocking the boat. What we're doing is working, so we're just going to keep at it. She also measured in at 25 inches long, which is the 69th percentile for height. This once again allows me to make my "she's tall and skinny, like her mommy" joke. *snorting* Poor baby girl also got her vaccines (cause we ain't crazy) and she qualified for the RSV antibodies shot since she's a cardiac baby. All in all it was four shots, which was rough for everyone. I hate having to restrain her and watch her poor little face when the needles go in her legs, but she needs the shots. Especially the RSV antibodies one. RSV lands perfectly healthy kids in the hospital, it could be even more dangerous for Helena.<br />
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We're also still seeing a speech therapist and a physical therapist and are in the process of switching from private therapists at the hospital to Early Intervention therapists. All Helena's doctors said they don't want her going out in the world any more than she absolutely has to during cold and flu season, and the Early Intervention (EI) people will come to the house to see her. It also makes my life a lot easier because I don't have to arrange childcare for her brothers while I take her to therapy twice a week. I can just banish them to the playroom and they'll stay out of our way.<br />
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As far as therapy goes, Helena is also doing well. Her speech therapist loves seeing us because Helena is progressing so well so quickly. Her therapist said she's done more in the 6 weeks that we've been going than some kids will do in 6 months. We've gone from complete oral aversion (screaming, coughing, gagging anything we would attempt to put anything in her mouth) to oral defensiveness (allowing us to put a bottle in her mouth, but still being a bit scared and wary of the situation). She's still not taking her feeds by mouth, but she will let me put the bottle in her mouth and she'll play with it and swallow what comes out. She's lost her instinctual sucking, so we're working on ways to get her to eat that either encourage her to figure it out again, or don't involve sucking (I've ordered sippy cups and we might transition to those super early since without the valve in you don't really have to suck on them to get milk out). She's taking 20 mls orally a couple times a day, which sounds like nothing but considering a few weeks ago she wouldn't even open her mouth for the bottle and would scream if I tried to put it in her mouth it's huge progress.<br />
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In physical therapy we're working on general strengthening and stretching. After spending a month in the hospital Helena's arms and legs were a bit weaker than they should be. And because of the surgery we couldn't do tummy time for weeks after she came home, so she was behind on that as well.<br />
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"What the crap is this nonsense Mommy?"</div>
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She tolerates it now, rather than screaming her head off whenever we tried it, which was the case before. We're also working on reaching and grabbing at toys and generally getting her whole body to be more midline. From the reflux, she wants to keep her head turned up and to the right (apparently it's A Thing for all reflux kids), so we're working on fixing that, as well as getting her arms and hands more in the middle. She's just started really reaching for her toys, so we're really encouraging that too. A lot of "normal" development stuff is stuff we need to work on, but everyone who sees her says that she's doing really really well considering everything she's been through.</div>
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She's both holding and looking at the toy. This is big in our world.</div>
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All in all things here are good. We're going to keep doing what we're doing and hope it stays that way for awhile!</div>
Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-31207513277857730672015-10-17T13:39:00.002-05:002015-10-17T13:41:45.699-05:00Therrr-a-peeWhen Yiya was doing her physical therapy, she would pronounce it "therrr-a-pee" and it's one of those things that have lived on in our family.<br />
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Helena is now in therrr-a-pee too. We're seeing both a speech therapist and a physical therapist and she's making good progress with both.<br />
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With the speech therapist Helena has gone from holding her tongue in a defensive position (who knew there was such a thing?) to not, and she will actually allow things in her mouth without screaming and/or gagging now. She's licking her hands, her blankeys, her lovey and anything that comes near her mouth. It sounds like nothing, but it's actually a big deal for her. Just two weeks ago none of that was happening. She's actually letting me put her nee-nee (Natarelli for pacifier) in her mouth now. She's still not latching on to it, but she's tolerating it in her mouth and playing with it in there which is big progress for us. Her therapist actually said she's made more progress in two weeks than some babies make in two months, so we feel really good about that. We're still not attempting any bottle feeds, but we feel good that there is progress being made.<br />
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We also just started physical therapy (PT) per the suggestion of our speech therapist. Helena's default position is to hold her head to the right looking up and away to the right. We learned that this is very common for reflux babies, as it helps ease the pain of the reflux. The downside is that her neck muscles aren't strengthening as they should be, and she's really tight on the left side. Her speech therapist said if we start PT it will help strengthen the muscles and it can help the reflux and I'm on board to do anything to help that so we signed up. I'm actually super glad we did because it turns out Helena <i>really</i> needs PT. Because of all her time in the hospital, her arms and legs are weak and in weird default positions from being strapped down and hooked up to everything. She despises tummy time with a vengeance, and frankly because of her surgery we weren't able to start it right away so she's behind on her head/neck control. The therapist showed me different ways to do help her work on that, as well as stuff to get her reaching and stretching more and get some more muscle in her body. I had no idea she was so far behind, so I'm so glad we signed up for this. We're already seeing progress there too - she's reaching for toys on her playmat and putting her hands in and near her mouth.<br />
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It may seem like nothing, but to us her sleeping like this is major progress</div>
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All of this stuff has thrown us for a loop. We were so focused on the heart stuff, we never thought about how the heart stuff would impact her regular development. We never even considered needing all this therapy, but we're glad that it's available and that it's helping her so quickly. It was just very unexpected for us, and I wish someone had warned us that cardiac babies almost always have reflux and/or eating issues and that she might have motor control and strength issues from her time in the hospital.<br />
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Otherwise she's doing very well. She's finally beat the cold (it took us like 3+ weeks to beat it, of course it took her a bit longer), she's smiley and she's interacting with people more. The one downside to her getting better control of her hands is that she's becoming too good at pulling out her NG tube, so I've resorted to putting socks on her hands anytime she's in her bed. She wakes up and is so quiet we don't realize she's up and then pulls it right out. We went through two in two days, which resulted in a call to our medical supply company to order more. I need more than 4 a month with this kid! She's also gaining weight well and is over 11.5 lbs now!<br />
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The plus side is we get no-tubie photo shoots </div>
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So things are good. We're getting her the help she needs, and she's progressing and developing well with it.<br />
<br />Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-8255636012624372712015-09-28T14:21:00.000-05:002015-09-28T14:21:05.676-05:00Wait and SeeWe had another appointment with our cardiologist today, and it went well.<br />
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The cardiac team has decided on a "wait and see" plan for Helena.<br />
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She's growing, just not as quickly as they had hoped, but she is steadily putting on weight. She is still battling the cold (for realz, all the adults in the family are still battling the damn cold), and her cardiologist said it's actually a good sign that she's handling the cold so well. She's fighting it off on her own, which is showing how strong she is, so that's good news.<br />
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They're going to let her keep growing and see what happens. She's doing well right now so they don't want to rush into anything, and they're hoping in a few more months she'll have grown into her shunt and then they can put off surgery as long as possible.<br />
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The one thing we do need to work on is getting her to eat orally again. We've been doing dips, which means dipping her pacifier into her formula and putting it in her mouth while the NG tube feed is happening so she's getting some sort of oral stimulation, but she is still refusing the bottle and she's still not latching on to the bottle or the pacifier.<br />
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I've made an appointment with a speech therapist at our local hospital (NOT the hospital she had surgery at, with the stupid speech therapist we hated) and I'm hoping she can give me some guidance as to how to get Helena to eat orally again. She was up to half her feeds by mouth before the cold knocked her out, so I'm hoping we can make her relearn how to do that. So we'll see how that goes, I'm hoping it's a better experience than the one we had with the speech therapist earlier.<br />
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Other than that we're to keep doing what we're doing and let Helena take the lead and show us what she needs.<br />
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I'd also like to thank everyone once again. It's stupid and cliche, but it's also true - you really realize who truly cares about you when something bad happens in your life and the outpouring of love and support and prayers has been amazing and we appreciate all of it. Our eyes have been opened that some relationships aren't what we thought they were, but we've also realized how strong others really are. We have a long road ahead of us, and we're so grateful that we have all the love and support that we do going forward. So once again - thank you.<br />
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Despite all her troubles, she's a happy girl</div>
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<br />Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com1tag:blogger.com,1999:blog-826307235054478452.post-13606068402614988962015-09-18T09:33:00.003-05:002015-09-18T09:34:43.726-05:00SetbacksWe haven't had the best couple of weeks here.<br />
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What we thought was Helena's reflux acting up was actually a cold that she caught from My Big Guy (he also shared it with the entire family). The symptoms of reflux and a head cold are shockingly similar, and with the dire warnings the doctors and nurses gave us about Helena catching a cold we overlooked that possibility because she wasn't in that bad of shape. Luckily, we went to the hospital to get her stitches clipped and her cardiac nurse was all like, "No, that's totally a cold!" It was just good timing that I happened to make the appointment with them because her stitches happened to start peeking out. We would have just kept thinking it was the reflux.<br />
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The good news about the cold is that it explains her aversion to eating - she can't breathe while she's eating because her nose is so stuffed up. Once the cold clears up we're going to get back to trying to get her to take more food by mouth, but at least we have a real reason as to why she stopped her oral feeds. After getting some new meds and switching to Nutramigen the reflux seems to be doing much better, we just need to get the cold under control now. All her doctors and nurses agree that there's no point in trying to make her eat by mouth while she has the cold because again, she can't breathe while doing it.<br />
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We had a visit to the pediatrician who confirmed that the cold is just a cold and there's nothing we can do but let it run its course. Her lungs are clear and she's not running a fever so meds won't help with anything.<br />
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We also saw the cardiologist and learned that the shunt seems to be doing its job a little too well. Helena has too much bloodflow going through her heart right now. They put in a big shunt assuming that she'd grow into it rather quickly, but she's not growing as quickly as anyone would like so the shunt is still too big. As a result Helena has congestive heart failure.<br />
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Now, congestive heart failure is a horribly misleading name for what's going on. Her heart isn't failing. Basically what it means is that her heart is working too hard, which is is because it has too much blood flowing through it. The cardiologist and the surgeon and the whole cardiac team from our hospital met and discussed Helena and decided not to do anything right now, but to give her a little more time to grow into her shunt. If she grows into the shunt the heart failure will go away. In the meantime we've adjusted some of her meds to deal with the symptoms of the congestive heart failure and we're going to really try to get her to eat more. Her cardiologist said her heart functions all look great, again, it's just too much bloodflow going through it.<br />
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It's sort of horrible cycle again - her body is working so hard just to be alive that she's tearing through the calories she consumes so quickly that she's not gaining weight. But if we try to give her more food she's likely to puke it up, or it might cause her body to have to work more to digest more and burn even more calories. But she needs more calories to grow. We upped the volume of food a little, but we don't want to overwhelm or overwork her.<br />
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We go back to the cardiologist in two weeks and we'll see what he has to say about her then. Hopefully by then the cold will be gone and she'll have gained some serious weight.<br />
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Despite the setbacks Helena is still happy. She loves being snuggled, especially when there are butt pats involved. She has also developed a fondness for her playmat which her brothers love since they get to lay on the floor and "play" with her.<br />
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We're just taking it one day at a time, and hoping and praying for the best. Her doctors don't seem super concerned with the situation since they're giving her more time to let her body sort of work this out on its own, which we really like. Hopefully it does just that.</div>
Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-52642380514651775422015-09-08T10:41:00.001-05:002015-09-08T10:42:07.849-05:00Tubie TroublesWhen dealing with a sick baby, there are going to be highs and lows, good days and bad, and ups and downs.<br />
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We're currently dealing with more of a "down" situation in regards to Helena's eating. Her heart is fine, her cardiologist said she's doing well, but we're having some feeding issues.<br />
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Helena was on the NG tube, and we were doing great in increasing her oral feedings. She was taking almost half her feedings by mouth and doing well with it. Then reflux hit. She had all the classic, horrible reflux symptoms - gagging, coughing, spitting up, crying when we tried to orally feed and refusing the bottle. Since she needs to gain weight (her shunt is technically too big for her - they put it in assuming she'd grow into it so she needs to grow into it!), we just sort of stopped pressing the oral feeds rather than torture her (we knew it hurt her to eat by mouth) and did pretty much all NG feedings while we figured out new meds and a new formula (she's now on Nutramigen).<br />
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The reflux seems to be getting better, but Helena is still refusing any oral feedings. She's still gaining weight because we're using the NG tube, but she really needs to learn how to eat by mouth again.<br />
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We're working on it, but it's hard because she does still cough and gag when we try to use the bottle and it's so hard seeing that happen to her. I know it's awful for her too, but I also know she needs to wean off the NG tube and the longer we let her do just NG feedings the harder it will be.<br />
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We'd really rather tackle the issue ourselves after having a terrible experience with the speech therapist in the hospital. She only saw Helena three times and was dictating how she would eat. She claimed that Helena wouldn't/couldn't eat orally but that was because Helena was asleep when this chick showed up. This chick woke her up and then tried to immediately make her eat from a bottle. Of course Helena refused! This chick then assumed that meant that she couldn't do it, and recommended we only try feeding tiny amounts by mouth. How the hell do you make recommendations for a patient you've only seen three times (while we were there a month, it's not like she didn't have ample opportunities to come by) and are attempting to feed in a not normal situation? She also never called us back, and when I requested she come see us during one of our sleepovers she didn't. Her tips and tricks seemed useless and overall it was just a terrible experience.<br />
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The problem is that because Helena really needs to gain weight, we need to make sure she's getting all her calories in each day so we HAVE to use the NG tube to feed her. Well, the NG tube runs down her nose and throat and into her tummy. It keeps the pathway open for the stomach acid to gurgle up from the reflux. The NG makes the reflux worse, but we can't take the NG tube out because she won't eat without it because of the reflux. We're stuck in a horrible reflux-y cycle.<br />
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I plan on reaching out to some of her nurses for tips, but it's frustrating and hard. It sucks to see her suffer through her feedings, and not sleep well knowing she's in pain.<br />
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So we're in a valley right now. It's hard, and it sucks but we'll work through it. We have a great team of medical professionals helping us, and I am confident we'll get her eating by mouth again, it might just take some time.<br />
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<br />Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-61594887126578563712015-08-31T09:32:00.003-05:002015-08-31T09:37:37.499-05:00Update 8.31.15We live in a "no news is good news" kinda world over here. I haven't updated cause we've been busy and well, nothing major has changed (which is good news).<br />
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Helena is still doing well. The only real hiccup we've had is that at her surgical follow-up we discovered she wasn't gaining enough weight. Because of her heart defect and the shunt, her body is working a lot harder than a normal baby's and so she's burning through calories much faster than a normal baby would. She was already on fortified formula (we have our own special Helena recipe for mixing up the Similac) to get extra calories, and when we learned that she hadn't gained weight in like two weeks (but she also hadn't lost, so that was good) we upped the calories on the mixture. So we're rocking 27 calorie per ounce formula and it's working because she's been gaining weight daily since we made the switch (we also are now those people with a baby scale and are weighing her daily per the doctor's instructions). She's tolerating the new mixture and now she's growing which is great.<br />
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We worked with her cardiac nurse to try to wean her off the NG tube but she wasn't having it, so we just adjusted her feeds so that now she's eating every four hours instead of every three which is so much better for those of us who have to feed her.<br />
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We've been just hanging out at home and adjusting to our new normal. My Husband returned to work (boooooooo!) so My Guys and I have been home with Helena ourselves during the week now. They adore their sister and are so happy to help and try to calm her down when she cries and are just in love with her.<br />
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My Big Guy talking to Helena<br />
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We did have a fun adventure where Dr. Mommy and Dr. Daddy had to put in a new NG tube for her. I had put Helena in her bathtub on the kitchen table and was just finishing up her bath when her brothers came home. They hadn't seen me bathe her yet and were super excited to see what was going on. So I let them pour a bit of water on her tummy and wash her feetsies and then I said it was time to take her out. I had cleverly draped the feeding tube over the side of the tub so it wasn't sitting in the icky bath water. As I lift the squirming, wet, slippery baby out of the tub My Little Guy leans over to see better and leans right on the NG tube hanging off to the side. It snagged just enough to loosen the tape on her cheek. I yelled out "Noooooo!" and tried to grab it to hold it in place, but you know, I was also holding the naked, squirmy, slippery baby who was now crying because she was out of the tub and cold and so I couldn't. Helena sensed that the tube was loose and made a weird snorting noise sending it flying, covered in snot out of her nose. That was that.</div>
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On the plus side, we did get some adorable shots of her without anything on her face (it was one of only a handful of times even we have seen her without anything on her face!).</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQBTSDq5OzBseDWupgoRe20wxdvCHcozdZzRtsV0RqjPgM-Zi6_K8oXEVFXfHf0H7Nvuz_gFnmrf8lIBTL_2MN2Cukec7WlV1SNjYpRQLmj8bWrwaiBFrRd2ejbACzz-DuVXQcVQR9gQE/s1600/Helena+no+tube.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQBTSDq5OzBseDWupgoRe20wxdvCHcozdZzRtsV0RqjPgM-Zi6_K8oXEVFXfHf0H7Nvuz_gFnmrf8lIBTL_2MN2Cukec7WlV1SNjYpRQLmj8bWrwaiBFrRd2ejbACzz-DuVXQcVQR9gQE/s320/Helena+no+tube.jpg" width="176" /></a></div>
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Adorbs.</div>
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And Dr. Mommy was awesome and inserted the tube on the first try. Both Helena and I were super excited about that. </div>
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I've also started to dabble in babywearing. Helena LOVES to be held and snuggled which is delightful, but at the same time Mommy has shit to do. As much as I'd love to just lay on the couch snuggling her and watching HGTV I can't. I was going to investigate wraps and carriers (the Baby Bjorn was a disaster with My Guys that ended with all of being super hot and sweaty and miserable and a donation to Goodwill) when my nextdoor neighbor came over with a wrap/carrier thing and said it was her favorite when her kids were infants and she gave it to me. So far so good, as evidenced by this super flattering pic of me this morning enjoying my coffee while Helena sleeps nestled up in there.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu8_zQovtA69N9gGwcjrxcVqHoAbvsXtEjgbai5j1GRcMCMYrDbi4r6WW4qFAiZq4iv8YxsS3E08ar7DbY7BSPkJbA8_WLRqD7_JKsFEJHMuhX_FpTdTZtNkVEkQJX3tvpd9mUhG_Jjiw/s1600/babywearing.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu8_zQovtA69N9gGwcjrxcVqHoAbvsXtEjgbai5j1GRcMCMYrDbi4r6WW4qFAiZq4iv8YxsS3E08ar7DbY7BSPkJbA8_WLRqD7_JKsFEJHMuhX_FpTdTZtNkVEkQJX3tvpd9mUhG_Jjiw/s320/babywearing.jpg" width="176" /></a></div>
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Cheers!</div>
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So that's going well. I'm going to show My Husband how to wear her so he can enjoy the snuggles and freedom too. </div>
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That's pretty much it. We have our slew of doctor's appointments set up and we'll just keep doing what we're doing since it seems to be working for all of us.</div>
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Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-52397584511514759212015-08-15T16:09:00.004-05:002015-08-15T16:09:55.512-05:00A Bumpy Ride HomeWe are Home.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj55kNCEPDwBb3i70dqoNCiJrJWOwQU3rrSvaf-0vaHWWmTssAnfnuyOzs_UGejVdPGwxDIdABs6CRxiNAg_GwlKSnuvLFOwEIvykbvICRDGw627dNQ_iF5_C4mjnu8qH4V9ljdHcy_MI/s1600/Helena+Swing+8.11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj55kNCEPDwBb3i70dqoNCiJrJWOwQU3rrSvaf-0vaHWWmTssAnfnuyOzs_UGejVdPGwxDIdABs6CRxiNAg_GwlKSnuvLFOwEIvykbvICRDGw627dNQ_iF5_C4mjnu8qH4V9ljdHcy_MI/s320/Helena+Swing+8.11.jpg" width="176" /></a></div>
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Sweet girl enjoying her swing</div>
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I should say, we are home again.<br />
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We were officially discharged after a month in the hospital (2 surgeries, 3 floors, and 4 weeks!) on Tuesday August 11th. We can home and attempted to settle into our new routine. Things were going well, we had visits from all of the grandparents, including My Husband's grandma who is one of Helena's namesakes. She had not met Helena before as all the walking to visit her in the hospital would have been hard for her (she's 95 and recently had knee replacement surgery). That was A Moment.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-PDfkdBGYafzaVjKiFobJhyphenhyphen-nIFSDh1roQWKRjs_PANsWzaROfQ0J36Qlxgke9AxPDY4yxbBP9xTi257wb9cgZRXhyYLfCzPYwM6vep4lxRLFw1JbantvyQGWoo5K1UO3BTQtNVOilOY/s1600/Grandma+Jenny+and+Helena.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-PDfkdBGYafzaVjKiFobJhyphenhyphen-nIFSDh1roQWKRjs_PANsWzaROfQ0J36Qlxgke9AxPDY4yxbBP9xTi257wb9cgZRXhyYLfCzPYwM6vep4lxRLFw1JbantvyQGWoo5K1UO3BTQtNVOilOY/s320/Grandma+Jenny+and+Helena.jpg" width="176" /></a></div>
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*tears*</div>
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On Thursday, we took Helena to the pediatrician for her first well baby visit. Things there went as well as expected (poor little girl doesn't like being unswaddled, or naked and the visit involved a lot of both). We loaded her up in her car seat and headed home.<br />
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Our pediatrician is less than 10 minutes away from our house. Helena was not pleased about the arrangement, and let us know about it by crying the entire way. She's had much more intense and longer lasting crying fits than the one she was having, and again, it's less than 10 minutes away so we just pressed on and drove home. When we got home we took her out of the seat and realized her lips were bluish, her skin was mottled, she was sweating profusely and was having labored breathing. She did start looking better once she calmed down (her lips regained colors, her skin starting pinking back up) but her breathing was still really labored so we called over to the hospital and one of the cardiac nurses told us to bring her back in. So off to the Children's Hospital ER we went.<br />
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Of course by the time we got there, Helena was basically fine. She was breathing a little fast, but it wasn't the hard, labored breathing she was doing in the midst of her fit. The cardiologists came down to the ER and said they thought it was just a one time event due to fussing too much, but they admitted her for observation overnight just to be safe.<br />
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So Helena and I had another hospital sleepover. They watched her all night and nothing happened. She was fine. They did an echo just to make sure her heart and shunt were all still doing what they're supposed to do and they are, so they sent us back home. Everyone agreed it was a one time event, she's still doing fine. We just have to watch her very closely when she's having a fuss fit and try to calm her down as soon as possible. On the plus side, because we were back in the hospital we updated one of her meds, made sure that her NG tube was placed properly (Drs Mommy and Daddy placed this one at home), and I was able to snag some of the hospital bottles she seems to prefer.<br />
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Now we're back home, again and settling back in. Again.<br />
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We're all doing well. Tired, but good. Helena is on an every three hours eating schedule, even during the night because her body and heart are working so hard she needs extra calories so even if she's asleep or not really super hungry we're feeding her to make sure she's growing and gaining weight so that's kinda brutal for us, but meh, you gotta do what you gotta do. She's still on the NG tube, but now that she has her preferred bottles is doing well taking food by mouth too which is awesome.<br />
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Her brothers are delighted to have her home. They cannot help enough. Any time Helena starts crying they come running to tell me, even if I'm sitting three feet away from her. They love her. They shower her with kisses and loves and keep wanting to share their toys with her ("No, I don't think Helena needs a Thomas book, but thank you!"). It feels so good to be home and together.<br />
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We know we have a long road ahead of us, and we're still taking it day by day, but so far things are good.<br />
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(note the middle finger peeking out of her swaddle, that's my girl)</div>
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"Fuck you, I'm home bitches"</div>
Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-69426316418160417602015-08-03T17:02:00.004-05:002015-08-03T17:02:58.190-05:00Update 8.3.15<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLk43O5JBLoLMZtXhkFObmDbIO1U3AiJ-hjWOuQ5rTx2PnKSRV440PjIFlInBrznf-7GpDBaPNDFw6Xpv6_tUTewQPy1x3COD-XqCgH0RZnzLGCz9oi28f8j-C-D_yJycBsacmq7wcANA/s1600/Helena+nee-nee+8.3.15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLk43O5JBLoLMZtXhkFObmDbIO1U3AiJ-hjWOuQ5rTx2PnKSRV440PjIFlInBrznf-7GpDBaPNDFw6Xpv6_tUTewQPy1x3COD-XqCgH0RZnzLGCz9oi28f8j-C-D_yJycBsacmq7wcANA/s320/Helena+nee-nee+8.3.15.jpg" width="176" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimgoBgAkvtRcFfvKEh54rrQ83TefHSNWIEhovDaSveqoNLp5hg9YzxOGBdBtYN7xxBAksiz0V6-J-uo6eEa2gh_wZMG6CFdqa3L34MNIyf7YsQqp8KDhHTrgNjrJyjYYYdLJOg_lF2q_4/s1600/Helena+8.3.15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimgoBgAkvtRcFfvKEh54rrQ83TefHSNWIEhovDaSveqoNLp5hg9YzxOGBdBtYN7xxBAksiz0V6-J-uo6eEa2gh_wZMG6CFdqa3L34MNIyf7YsQqp8KDhHTrgNjrJyjYYYdLJOg_lF2q_4/s320/Helena+8.3.15.jpg" width="176" /></a></div>
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Look! Look at our sweet girl with only an NG tube on her face! No more oxygen! Hooray!!</div>
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They've taken Helena off all her oxygen so she's breathing 100% on her own, just room air. They've also removed her arterial line, and taken her off all her IV's (they're switching a bunch of her meds to get them orally). </div>
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We had a great visit today where we met with speech therapy to work her sucking reflexes. Because she's never actually eaten through her mouth she's lost some of that, but as you can see with her using her pacifier, she's getting it back. They tried to feed her with a bottle and she wasn't a fan, but they're hoping to get her to take food from a bottle in the next few days and get her off the NG tube. We did a lot of practicing with her pacifier, and she seemed to catch on to that pretty quickly so hopefully she does the same with the bottle. They've also upped the amount of food she's getting to full feeds, which she seems to enjoy. </div>
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Even off the oxygen all her numbers are looking good, and she's doing everything she needs to. </div>
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I also got to get some quality snuggling in, which is always wonderful. </div>
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Helena is doing great, and meeting every challenge thrown at her so far. Thank you all for your prayers and support, it's all working!</div>
Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-22562304425172909022015-07-31T10:12:00.001-05:002015-07-31T10:12:40.746-05:00Update 7.31.15We've had a couple of good days!<br />
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Helena had her shunt surgery Monday, and it went well. The surgeon called her a champ and said she did great. Since then she's been in the Pediatric Surgical Heart Unit recovering (They call it the PSHU. Because we're mature adults we've taken to calling it the Pikachu) and everyone says she's doing great.<br />
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They took her off the ventilator yesterday afternoon, but kept her on her sedatives over night so that she could rest and get good sleep after the HUGE adjustment of finally being off the vent. She's basically been on a ventilator her whole little life, so getting off of it and having her numbers all stay good is big. It's a giant adjustment for her, so they're just letting her take the lead and not pushing her too hard.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR4bYQQnuxkiEhhoaSaTKTMXA65XKMsBM-8EN_MwhpWsSi1t8ZDNlYqfAfCL0Dxs9vTSEjik6TU4zUWKyjPvkSV55K-CWzZZn97A-AZa_PjVXxPA0kWObxO6QCBDhhwOUBbhgm9KTFbko/s1600/Helena+no+vent+7.30.15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR4bYQQnuxkiEhhoaSaTKTMXA65XKMsBM-8EN_MwhpWsSi1t8ZDNlYqfAfCL0Dxs9vTSEjik6TU4zUWKyjPvkSV55K-CWzZZn97A-AZa_PjVXxPA0kWObxO6QCBDhhwOUBbhgm9KTFbko/s320/Helena+no+vent+7.30.15.jpg" width="176" /></a></div>
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Our sleepy little girl resting after her big day</div>
<br />Helena had a great night, got a lot of good sleep and rested well. This morning all numbers are looking great and settling back to where they're supposed to be after the big day yesterday. They're going to start giving her food again, which makes this Polish / Italian / Greek family very happy! It'll be through the tube again since eating from a bottle is a workout for a normal baby, for her only 4 days post-surgery it'd just be too much. That's another goal for another day. Baby steps. Getting off the vent was huge. Eating will be huge for her too, and it should make her happy.<br />
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We're taking things slowly, and easing her off of the pain meds and sedatives carefully and just letting her heal and recover from surgery. Her body has a lot to adjust to and we don't want to overwork or overwhelm her so we're following her lead. Everyone says she's doing really well, and we're so very glad to hear it.<br />
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All her nurses and doctors have also said she's incredible feisty, which we consider a very good thing. Apparently when they extubate babies, their voices / cries are usually very weak right after, especially if they've been on the vent for a long time like Helena had been. Not Helena though. They told us that when they took the vent out yesterday she screamed and you could hear her down the hall. That's our girl :)Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-40204222382677751282015-07-24T19:17:00.001-05:002015-07-24T19:17:51.137-05:00Update 7.24.15The decision was made last night to go ahead and do the shunt surgery on Monday. Helena's oxygen saturation numbers just aren't where we want them to be, and all the doctors agree that it's not due to a lack of oxygenated and unoxygenated blood mixing, but due to poor blood flow because her pulmonary valve is so small. The only way to increase blood flow at this point is to put the shunt in.<div>
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Today we met with Helena's surgeon who is pretty much the most amazing man ever. He is so calm, and so reassuring, and so confident and that he just makes us feel so much better about Helena's situation anytime we speak with him. He went over the surgery in detail and answered all our questions about the surgery and his thoughts on her situation. He told us what his plan for her is, and we agreed that it is a good one.</div>
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The current plan is that Helena will have the shunt surgery on Monday, and after recovery at the Children's Hospital (which should be about two weeks) she should get to come home.</div>
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I can't even type that without crying.</div>
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She should get to come home. We'll be able to hold her. She'll meet her brothers. She'll be home. </div>
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The shunt should last her until we decide it's time for her big surgery to fix her TGA and VSD in about six months or so. There are minimal risks to the shunt surgery, and it should increase the blood flow to her lungs, which would raise her saturation levels to a point where they don't dip down to unsafe levels when she cries or fusses.</div>
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We really feel it's the best option at this point and we're so grateful to all her doctors for doing everything they could to try to avoid surgery, but we all agree it has to be done. </div>
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Until then, Helena will stay in the NICU. She is still stable and comfortable, and they're leaving her on the ventilator so that they don't have to just put it in again on Monday. She's getting milk through a tube again, and they're even upping the amount they're giving her at each feeding which she loves. Our little Polish, Italian, Greek baby girl LOVES her food :) </div>
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Once again, we thank you for all your support and thoughts and prayers. We feel truly blessed to have so many people care about us and are grateful for all of you.</div>
Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-12434797585803056122015-07-23T08:49:00.000-05:002015-07-23T08:49:12.215-05:00Update 7.23.15First of all, we'd like to once again thank everyone for your concern about Helena. It makes us realize just how lucky we are to have everyone in our lives, and how much you care for us and her and it really does help and mean a lot to us. Thank you. <div>
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So here's the latest update - Helena's doctors had decided not to do the catheter procedure on Monday at the last minute, but then on Tuesday, as I was washing up to go in for a visit my phone rang. I pulled it out and it said it was the NICU calling. Turns out they were calling to tell me that they decided to do the procedure after all and that Helena was going down for it in about an hour.</div>
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That was rough. It was more the surprise than anything else. It really caught me off guard, but they said they hoped it would help increase her oxygen saturation. </div>
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I called my husband, he came to the hospital and Helena went down for her cardiac catheter procedure.</div>
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The procedure went well in that they were able to make a hole in the upper chambers of her heart bigger (a hole that is supposed to be there, unlike her VSD) to increase the amount of blood mixing in the hopes of raising her oxygen saturation levels. They also tried to stretch out her pulmonic valve, but it's just so small that they weren't able to do that with the catheter. They took a bunch of pictures and measurements and got a lot more information than we had earlier by doing the procedure too so that was good. Helena was under for it, but was stable the entire time and did great.</div>
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Since then, her oxygen saturation levels haven't been great. They've been ok and better than they were, but when she cries or fusses they go down significantly and since you can't really tell your newborn "Hey, don't cry!" we have to figure out a way to get the baseline levels up high enough so that when she does cry her levels stay where we want them.</div>
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She is still on the ventilator while they try a couple of other options to see if they can increase her saturation levels but there is discussion of doing surgery to install a shunt that will create another way for her blood to mix and hopefully increase her oxygen saturation. We're taking it day by day and seeing what her body does and how she responds to different things. Her doctors are all working together to determine what's best for her, and they're not rushing into anything which we like. </div>
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Helena is stable and comfortable, which is all we can hope for while we figure out what the next step is going to be. </div>
Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-70193940058599293732015-07-20T18:47:00.001-05:002015-07-20T18:47:19.403-05:00A Good Day!<div class="update_body" style="background-color: white; border: 0px; color: #3e3733; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14.3999996185303px; line-height: 18px; margin: 0px; padding: 0px; vertical-align: baseline;">
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So I set up the hospital's website updating thingy, but anyone who wants to see it has to create an account and login everytime which is just stupid so I'll just post updates here when I can.</div>
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Today was a good day!</div>
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Brett and I had gotten to the hospital early this morning as Helena was scheduled for a catheter procedure to open a hole in the upper chambers of her heart. This hole is supposed to be there, unlike the VSD in the lower chambers of her heart. Her oxygen levels haven't been as good as we had hoped, so the thought was that opening this hole would allow for more blood to mix and raise her oxygen levels.</div>
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The cardiology team sent someone down to do an echo on her, and after looking at that they decided to cancel the catheter procedure! Helena's lungs still have a lot of pressure in them, which is normal - babies are born with a lot of pressure in their lungs and it slowly goes down. Based on what they saw on the echo the cards team decided to NOT do the procedure, but give her some more time to let that pressure in her lungs go down on its own and see if that helps raise her oxygen levels at all. Awesome news to hear! If the levels don't go down, we'll re-evaluate and perhaps do the procedure later, but for now we're going to give her body a chance to see what it does on its own.</div>
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Because she isn't having the procedure done, she gets to be fed again which she LOVES. She is currently being fed through a tube down her throat because she's on oxygen and it's just too difficult for her to manage sucking/swallowing while receiving the amount of oxygen she is getting. But that doesn't seem to bother her, she gets very excited when she's being fed and has been very angry that she hasn't been eating the last few days (when they stop the tummy feeds, she is getting nutrients and stuff through an IV, so it's not like she's starving or anything).</div>
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But the most exciting thing that happened today was that Brett got to hold her :)</div>
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Because she was on the ventilator (she's now just on oxygen through her nose) we hadn't been able to hold her until now and it really did wonders for all of us. We felt better, and we think she did too :)</div>
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Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-38555375354023318122015-07-19T10:26:00.000-05:002015-07-19T10:26:03.610-05:00"You're having a baby today." "%&$^."So here's the longer update on what happened on the 14th for those who are into birth stories and all that jazz.<br />
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I had been going to NST's (non-stress tests, basically they monitor my contractions and the baby's heartrate for 20-30 minutes while I hang out reading in a recliner, it ain't all bad) twice a week since I hit 36 weeks. It's something the hospital does with all cardiac babies, as some of them are at a risk for being stillborn (not really a risk in our case but they still made me do it). I had an appointment for one of those, as well as a visit with my OB on Tuesday the 14th to determine what the plan for my induction on the 16th would be (what time should I get to the hospital, what are they going to do, how "ready" I was, etc).<br />
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I had full blown pre-eclampsia with My Big Guy, and was induced for high blood pressure with My Little Guy. Luckily, with Helena, my BP had been great well past the point of the high BP with both the boys. However, I will be the first to admit I was a bit nervous at the NST and my OB appointment since you know, we were figuring out what was going to happen. It had been a week of anxiety and fear for me and my husband and I'm sure that contributed to my BP being higher than expected.<br />
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They took my BP at the start of the NST. It was high. They told me they'd take it again at the end after I had been resting for awhile. It was still high. They sent me over to the OB. It was high when they took it. Then my wonderful, delicate OB says to me, "We're gonna take it one more time, if it doesn't come down you're having a baby today."<br />
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Well thanks assface, what do you think my BP is going to do after you say that? Of course it was the highest it had been all morning at that point. He tells me, "You're having a baby today." I replied, "Fuck."<br />
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I had none of my shit. I stupidly hadn't even packed a bag because I was being induced Thursday, I'd pack Wednesday night, right? Wrong. I asked if I could go home and get my crap. They said no, I was being admitted immediately. They sat me down in a wheelchair and took me over to Labor and Delivery. The boys were supposed to get haircuts that afternoon (man do they need them!). We had our babysitter coming that evening so my husband and I could go out to a nice dinner one more time before things got crazy. I had grand plans of grocery shopping Wednesday morning while the boys were at camp. My husband thought he had two more days to get shit done at work. Not so much for any of it.<br />
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All this time I'm calling and calling my husband and he's not answering. I'm calling his cell, I'm calling his work number and neither him nor his secretary are picking up. Of course.<br />
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I ended up texting one of our friends who works with my husband, asking if he knew my husband's whereabouts (it was lunchtime, so I thought maybe they were out to lunch or something). He replied that yes, both he and my husband were teaching a class right now and how wonderful my husband was.<br />
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I replied something like, "Oh that's great, I'm being admitted and induced now, so can you tell him to you know, call me back?"<br />
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Two minutes later my husband called me, asking me, "Are you serious?" to which I replied, "No, I fucking joke about being induced and pull you out of a class for it. Yes I'm serious."<br />
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I emailed him a list of shit to pack for me, and he left work early and came to the hospital. It was an impressively fast trip from downtown to our house (via cab) to the hospital for him.<br />
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They started pitocin around 1:30ish. I got my epidural around 4:00 (praise be to the anesthesiologist).<br />
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Around 6:45ish they came in and said they were going to break my water since I was only at 6 cm. I said cool, things are gonna go really fast now so be ready (with My Little Guy, they started pitocin and broke my water at the same time and he was born 3 hours later). I think they don't really take you seriously when you say these things, but dude I know what's up. I went from 6 cm to 10 cm in about 30 minutes (which felt great as my epidural was starting to wear off) telling them the whole time that we were getting close. Sure enough, Helena was born at 8:00 after about 3-4 pushes. It hurt like hell, which was a great motivator to get her out. They kept telling me to catch my breath but I was all, hellz no, this hurts like a bitch, I am pushing this baby out and getting this pain over with. And I did.<br />
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We had what felt like 50 people in the room with us (the OB team, the neonatologists, the pediatric cardiac team, and then at the last minute they asked if a dude training to be an EMT can watch too and when your epidural is wearing off and there's already 35 people in the room, what's one more? Sure! Invite strangers off the street in for all I care at that point) ready to take care of Helena .She was born nice and pink and cried right away. They took her, wrapped her up and whisked her off to the NICU right away.<br />
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Helena has obviously been in the NICU since then, and even though it's only been 6 days we've had our ups and downs and are working with all her doctors to figure out what the best plan for her is. She's on oxygen (they did take her off the ventilator and she's now just on the nosey oxygen) and not much else, and she's stable and comfortable which is good. We're all following her schedule and her lead and letting her tell us what she needs and what she will and will not tolerate well and we're going from there.<br />
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We're doing ok. It's hard, it's emotional, but we also know that she's in the best place with the best people caring for her and we trust their judgement and recommendations for care. We appreciate all the love and support everyone is sending our way, and are very grateful for it.Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0tag:blogger.com,1999:blog-826307235054478452.post-26848773017923122412015-06-29T07:49:00.000-05:002015-06-29T07:49:18.884-05:00T - 17 DaysI'm scheduled for an induction on July 16th. We have 17 days until the shit hits the fan.<br />
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We had our last fetal echo, and everything looks the same as the last one. The good news is that one of her valves that looked small before seems to look more normally sized now and if that's the case it will limit the amount of surgeries she'll need in the future. Her oxygenated and unoxygenated blood seems to be mixing well too, at least according to the ultrasounds.<br />
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There's really only so much we can tell from these ultrasounds. While things look ok now, we really won't know what's going on until she's born and they can do an ultrasound on her directly. We're prepared in that the cardiac team will be there when we deliver (hence the scheduled induction) ready to assist and administer whatever help she might need.<br />
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The possibilities range from her being fine and having decent enough oxygen levels to come home to things being much worse than we thought and her needing the Big Surgery right away. Again, we just won't know until she's here. And for someone who doesn't like surprises that's pretty hard to deal with.<br />
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While my husband had to go back to work after the fetal echo, I stayed at the hospital for my general OB appointments and then took a tour of the pediatric cardiac surgery floor.<br />
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Oy.<br />
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I'm glad I did it because I hate surprises, and this way I know where she'll be and what the place looks like and a general layout of the land but seeing all those other tiny little babies hooked up to the machines post-surgery... I managed to hold it together until we walked out and the door closed and then I lost it. I'm glad I did the tour, but it was rough to imagine your baby surrounded by machines keeping her alive, but that will eventually be us and again, I like to know what's going to happen and where we'll be.<br />
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So for now we're just preparing as though Helena will be coming home fairly soon after delivery (she'll of course be in the NICU for a time, but we're all hoping that she'll be here and a pretty much normal baby sooner rather than later) and setting up the swing and the changing tables and buying tiny little diapers. It's weird getting this stuff ready not knowing when she'll be able to use it, but I want it ready for her when she needs it.<br />
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I was telling my husband earlier that I'm done being pregnant (I fucking hate being pregnant), but at the same time I don't want her to come out yet because that's when things start getting scary. While she's in there she's safe and fine and healthy. When she comes out, who knows.<br />
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We're hanging in there. We're psyching ourselves up for delivery and all that comes with it. And we're scared. But we can't control the situation (which is hard for both of us) and all we can do is prepare as best as possible and we feel confident that we've done that. We keep being told that this hospital is The Place to be for things like this, and that we'll have the best care possible. That's all we can do for her, which is really fucking hard.Snarky Mommahttp://www.blogger.com/profile/01599710678003561777noreply@blogger.com0