This is Todd’s absolute favorite time of year. The craziness of summer is coming to an end, the morning is cooler and the shadows grow longer. Pretty soon Starbucks will have Pumpkin Spiced Latte and it will be official – Fall is coming! Let the cozy times over good food and coffee begin….
This year calls for great celebration as Vivien turns one year-old. She’s truly an amazing girl and we are excited for you all to meet her. As we’ve been mailing out announcements to all of the doctors and staff we’ve met this past year, we’re reminded of so many people who have truly been cheering Vivien on. It’s been a crazy year with many high and low points and we are both grateful and amazed by all that God has done for us.
Speaking of this, we want to give God glory and help you to understand how amazing it is that Vivien is turning one. Here are a few statistics. In her prenatal diagnosis, Maternity 21 test and amniocentesis Vivien was confirmed to have Full T-18 (not mosaic). Trisomy 18 occurs in 1 of 6000 babies live births or 1 in 2500 babies conceived. Edwards Syndrome is another name for Trisomy 18. 86% of those diagnosed with Trisomy 18 are aborted because they are told that they will "die anyway". (A self-fulfilling prophecy because abortions do skew the statistics as babies who might have lived if given a chance are terminated. Parents are also sometimes advised to induce too early to "have a few moments with their baby alive", which ensures their death - making the number of live births much smaller.) Of the few babies that are born alive, only 5-10% make it to their first birthday and many of them have mosaic Trisomy 18, not full like Vivien. (And of those born alive, the statistics are skewed as well because many are given no intervention at all, further ensuring the low statistical probability of babies making it to age 1.) We are so grateful for the medical professionals at Swedish who supported our decision for intervention. Nevertheless, that makes Vivien in an extremely small percentage and we are still marveling at where we are at especially considering how healthy she is as you will see by her "fun facts" below. Isn't it amazing to realize what Jesus has done for us?
This does not mean that His heart doesn't hurt over those whose babies do miscarry, are aborted or who die shortly after birth. It does not mean that he loves them any less. Often those who terminate believe that they have no choice or do not fully understand the implications of their choice and our hearts grieve for them. We remind ourselves that those babies are enjoying life in heaven and our hearts go out with support and love for their parents and families. But we want to show our gratefulness to Him for letting us keep Vivien here longer.
Please, come celebrate with us! We’ll have plenty of food and would love to have you over.
VIVIEN’s FUN FACTS
- Vivien is totally free of any medication (which is impressive, considering all the meds she’s been on and the fact that we almost lost her twice, once at birth and once a couple weeks after)! She takes a multivitamin for babies and that’s it.
- She now weighs 15 pounds, 12 ounces and is about 27 inches tall.
- Thanks to her wonderful therapists, she is starting to reach for toys. She is also bearing weight on her legs and stiffens up to stand while we hold her hands.
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| No big deal everyone, just standing around... |
- She can hear the commotion of her brother and sisters, thanks to her pink hearing aids!
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| Silas is always good at making her smile! |
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| Standing! Look Ma, no hands! Thanks be to the chubby thighs! Pink hearing aid - (BAHA aids work anywhere on the head.) |
- Her heart was repaired in January and is doing great. She gets a checkup with her wonderful cardiologist every few months and had a great bill of health at her last one.
- She is on a pulse oximeter only at night, and unless she gets a cold, her oxygen saturations are beautiful and rarely drop below 95, usually hovering between 96-98 asleep and staying at 100 awake! No need for tubes, oxygen or breathing treatments. She caught pneumonia earlier this year, but our amazing pediatrician came into the office to check her on Mother’s Day morning, prescribed abuterol and with a lot of people praying and a bit of antibiotics, she was back to her sunny self in about a week.
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| Pump, feeding tube and therapy "little room". |
- Near the beginning of her life Vivien received a g-tube in her tummy and was on a continuous feed for many days. Now she still eats via g-tube through her stomach but takes her feeds 5 times day in usually about 20 minutes each and she is still gaining weight well (as her rolls and cheeks will attest.) We have worked with a wonderful nutritionist! Her feeding therapist is also super and she now takes small amounts of yogurt by mouth.
- Vivien sleeps from about 9:30pm-7:00am and takes a 2 hr and 15 minute nap in the afternoon. So glad to be on a good sleep schedule. It took some effort and determination to get her there, but she is happy and so are we!
- As for her disposition, there are many days that she does not cry the entire day. She is a very content little person. She hands out huge smiles to her big sisters and brother and has even laughed. Sometimes she wrinkles up her nose and her smile is so broad that Todd calls them “watermelon smiles.” She does babble “at us” occasionally and gives long loud sighs sometimes. We are looking forward to more laughter in the days ahead.
We hope you can join us Sept 12th. We will be showing a picture video of the past year. If you can’t make it, look for her video on you tube. We will paste a link to it on the blog in the days ahead.
And to commemorate her first smile which we caught on camera Superbowl Sunday last year, Vivien says, "Go Hawks!".
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| Vivien says "We're number 1 !" Happy 1st Birthday baby! |
Thank you for your prayers and support. We are so grateful to Jesus for what He has done this year and are excited to celebrate 1 year with Vivien!
