Vivien's Busy Schedule - Birthday Party, Dedication, Vacation and a Brief Hospital Visit

Vivien's "Throne" the kids made for her.

Well I know it’s about time I update again and there is much to share but first things first – Vivien had a wonderful 1st birthday party!

Thank you to so many of you (140!) who came to celebrate with us. We were so blessed by you – old friends and new ones and even people who we have only met online in the trisomy community.

Thank you for coming and sharing in Vivien's Life!

Thank you also for the gifts - both the monetary gifts to Overcomers International, as well as those brought to Vivien. There were quite a few without cards (or the cards were separated from the present) and to those that did have cards, we have good intentions of sending you all thank yours but have not done it yet. Please know we are so grateful for them all and for the love that came with them.

I wish that I had assigned someone to take pictures throughout the whole time, because I know we captured some of you, but not all. Thankfully one of my friends offered to go around with my camera during the time she was there and I am grateful for the pictures she got. I am including just a few here, but I will also include a link here to an album of most of them on Facebook.

 

 We are so grateful to many of you who helped, including the Grandparents contributions and the friends who helped with serving and decorating and ideas. We are so very supported by you. Vivien was happy as a clam and had no idea that all of the fuss was for her.

We also had the privilege of having Vivien dedicated to Jesus at our church several weeks ago. The Grandparents joined us and it was a beautiful time. They had asked us to pick a portion of Scripture to share. I had a couple in mind and I just love how God works, because Todd came home that morning after work and shared with me the exact same verses I’d been thinking of for Viv. They were verses that I had blogged about here when it was such a struggle to realize and accept that she would be different than our other children. The verses were Is 46:3-4 “Listen to me, O house of Jacob, all the remnant of the house of Israel, who have been borne by me from before your birth, carried from the womb; even to your old age I am he, and to gray hairs I will carry you. I have made, and I will bear; I will carry and will save."

At Childrens's Hospital

We continue to be blessed with good health for Vivien, although a few days ago we had a bit of a scare. She had been having some trouble with vomiting at the end of her last feed of the day. It wasn’t subsiding and then it got significantly worse, with her vomiting 7 times in a day. Our pediatrician advised us to go to Children’s so the Grandmas came to take care of the 4 who tearfully said goodbye to us. We went into it not knowing if we’d be admitted and the kids were worried about Viv although we assured them that we thought she’d be just fine. After running a lot of tests and ruling out the big things like heart issues, they sent us home with Pedialyte. We got a call with the results of the tests they did and it turned out she had a UTI, which can cause vomiting. We were very relieved to find something so treatable.  Todd and I were talking afterwards about how it was so strange being back at Children’s after spending so much time there last fall at this same time. We realized later that it was one year to the day from the day we brought her home after being in the hospital for almost a month.

It's exhausting being both intellectual and cute!

Thankfully she has been doing well and as you can see, in addition to her hearing aid, Vivien is now sporting pink glasses. When she had her 12 month checkup she was given a great bill of health and the good news is that she is on the charts for height coming in the 5th percentile. That’s a pretty big accomplishment for a little lady! Her weight isn’t quite on the charts, but obviously she is not starving. Here are a few taken just a couple days ago in her sweet little hoodie.

In more personal news, we are getting more into the swing of life. Summer was a breath of fresh air to me. It was like the sun was coming out in my life, as well as the Northwest. We got to do some fun day trips and continue to learn more about doing life with Vivien in tow and what it entails. Grandma Merry has also been babysitting her for a few hours at a time, which gives Todd and I some time for dates. Vivien has been doing SO well that we’ve been able to have some adventures. We took big two vacations – one was a trip with all the kids and some of the Granparents to Seaside, Oregon for 6 days and the other was a few days getaway alone for Todd, Viv and I to Vancouver, BC. We got good weather for both of them and I was on cloud nine as one of my very favorite things in the world is travel. I felt like I got my life back a little bit after such a traumatic year.

Seaside!

Seaside

Stanley Park, Vancouver B.C.

Speaking of such, God is so amazing. One of the things that I was wondering about– and quietly grieving mainly because it felt selfish when you look at the big picture – was the thought that we might not ever be able to travel, or that it would be very limited. God has a sense of humor, because between what we’ve gotten to do this summer, and what we have planned, Vivien will have been to Washington, Oregon, Idaho, Vancouver BC and Hawaii  - all before her 2nd birthday, God willing. Next spring break we plan to take the kids to Idaho, and in June, Todd and I get to go to Maui to celebrate our 15th wedding anniversary (March) and my 40th birthday (April). My wonderful cousin who is a nurse and my aunt will be coming along to help with Viv and the Grandparents and friends will be watching the rest of the kids. I feel God’s kindness, and truly unmerited favor acutely.

While I enjoyed the summer, Todd is a happy camper in the fall. It is his favorite season as the air gets cooler, the house gets cozier and school routine starts in. He loves routine and I love adventure. Opposites attract – although both of us do enjoy a little of each. We feel like life has normalized and between his work, homeschooling through co-op, piano lessons, Awana, church Bible studies, and basketball for the kids this coming winter, we are amazed at where we are at, living a fairly normal – actually maybe not normal – maybe a little too crazy busy – life. Vivien fits right in and even though life sometimes seems almost too full – I know that it’s not just because Viv takes a little extra work – it’s partly just because we have 5 kids who love life. Sometimes it feels like I can’t catch my breath but we are learning when to give a little extra effort and when to just let things go knowing we’ve done our best and try to enjoy the ride.

God has been talking to both Todd and I specifically about the need for Sabbath rest.  We are learning to not assume we are too busy to take time for our bodies to rest and spend time on relationships with God and others, or that the work we have is too important to take the time to take a break. It means letting things go that we might want to accomplish, knowing that it is prideful to think we can and must do it all. The world can go on without us if we take a break and we are not mini-saviors. Responsibilities can wait and we will actually be better at what we do if we take the time to rest every so often. Our Sabbaths are not Sundays, but when we can schedule them in and we know we are honoring Jesus in taking them.

We continue to have our “moments” of being overwhelmed but overall we look at life with a lot of gratefulness for where we are at. In fact, because of things being more settled, we can look at the outside world and all that is going on with wars, rumors of wars, people in tragic and difficult circumstances – and actually ask God “what do you want us to do?” rather than being so focused on our own needs that seemed to encompass all our time this past year. While it certainly wasn’t wrong to focus on Vivien - just being able to get past survival mode is a blessing and we don't ever want to take for granted our ability to look outside of ourselves and our own little family and ask God what needs need to be met and what He wants us to do with the gifts he has blessed us with so we can bless others.  We are grateful for the relative stability He has granted us with our sweet girl.

 

Vivien's First Year Slideshow - Short Family Version

To watch the longer Friends and Family Version click  Here

Slideshow of Vivien's First Year, Links to Evite & the Elijah Mubezi Memorial Maternity Wing Fund

The second version is family only, but 5 minutes for those of you who prefer short and sweet.
5 Minute Family Version

Here is the link to Vivien's laughter!

Here is the link to the evite for Vivien's party this Saturday.  All are welcome.
Party Time!

Lastly, as you may know, in lieu of birthday gifts we are asking you to give toward the building of a hospital in Uganda through Overcomers International.
Link:  The Elijah Mubezi Maternity Memorial Wing.
If you give by check please write "Elijah Mubezi Memorial" and if you give via Paypal, please write "Eiljah Mubezi Memorial" in the special instructions box.  The story follows:

Backstory of the Elijah Mubezi Memorial wing of the Hospital in Uganda

Several years ago my cousin Rachel went to Uganda with an organization dedicating her time to help children with special needs in Africa.

While she was there she met a wonderful man, Isaac at Hope University in Burundi. He loved Jesus and was studying to be a surgeon. He was from a poorer village and saw the lack of medical care available for them. While many in Africa study to become doctors because they are interested in earning money, moving to the city and getting rich Isaac saw the plight of many in his village who would become very sick or die because of lack of medical care. His dream was to study, go back to his village and build a hospital and serve there.

They fell in love, and married. Their dreams became one and they began working hard to begin their life together in Uganda looking towards building the hospital. My cousin Rachel and I became pregnant at the same time, hopeful for what the future held. We didn't know that both of our lives would look different than we were expecting. I received the news about Vivien and a few months later, when Rachel went into labor, her little boy Elijah went to be with Jesus before they even reached the hospital. She had had a healthy pregnancy up until that point.

Rachel and Isaac grieved, received comfort from Jesus and continued on with their dream. In their bereavement a relative set up a memorial fund to be given to create the Elijah Mubezi Memorial wing of their hospital. Vivien was born and is one of those "special needs" children that Rachel originally went to to help. In the meantime plans continue for the hospital to be built and their dreams are becoming a reality as they have obtained the permits and plans to help those in Uganda receive the medical care they need. In addition to this, Jesus has blessed them with twin boys born this summer!

You can visit Rachel's blog here: http://rachelinburundi.blogspot.com/

Please join us in remembering Elijah, celebrating their twins and and giving toward the hospital in leiu of gifts for Vivien's party. We are excited for what God is doing in their family and how God is going to bless those in Uganda!

Party Time!

Saturday Sept 12 and you are invited!  Click here for more info: PARTY TIME!

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.

No big deal everyone,  just
standing around...

•  She can hear the commotion of her brother and sisters, thanks to her pink hearing aids!

Silas is always good at
making her smile!

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.

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.
  
   

"Watermelon smiles" are usually blurry because she is excited and wiggly!

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!".

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!

One Year Ago Today by Todd.... and an Invitation for YOU!

Today we celebrate Vivien's 11 month birthday!  But a year ago today, our expectations for Vivien’s arrival were on both sides of the spectrum. Every day, even in utero, was a gift and (according to the doctors) meant she may be one of the few to make it to birth. On the other hand, we had no idea what would happen after birth or the complications that could take place. At the least, we hoped for a few minutes of life after birth, holding her, telling her how beautiful and loved she is. “You are beautiful, you are loved, you are loved you are beautiful” was a common phrase we’d tell her through Molly’s tummy.

Every night, I prayed for “Life, breath and joy” for Vivien. Our God is the Creator and Sustainer of life. Every breath is a gift, every heartbeat a miracle. The day of her birth finally came and she was welcomed with open arms. The elation of finally “making it” to the birth was quickly followed by the heaviness of expecting her death. The doctors were grave when it came to her prognosis, giving her only 2 to 4 weeks at best. On her second day of life, she was listless, working hard to breathe and dependent on the oxygen.

I truly thought the hope we had felt over the prior months had come to the point of only watching our girl die in front of us. The doctors encouraged us to bring her home on hospice care. The idea of bringing a sick newborn whom we expect to die home to four other active kids, all while being sleep deprived and emotionally strung out felt like hell on earth. But after nine days in the NICU, we were resigned to the fact that at least having her at home would give us and the kids a better opportunity to love her.

Four days after arriving home, Vivien had episodes were she would stop breathing. She would need to be stimulated before taking her next breath. The pauses got longer to the point we needed a bag-valve-mask to inflate her lungs. This led to our emergent transport to Seattle Children’s. What we thought would be an overnight visit ended up being a three-week hospital stay. As a side note, the physicians, nurses and staff at Children’s have consistently been amazing with Vivien. We sensed that they truly cared for her and, in spite of her diagnosis, really did hope along with us for better days ahead.

Those first couple months seem like a lifetime ago. Vivien continues to amaze the doctors. The staff admits they don’t see kids like her (with T-18) doing this well. Caring for Viv has been a greater joy than we expected (not to say it has always been easy). I value the small things in life more. We’re more willing to give thanks for all we’ve been given. Our kids constantly rally around Viv, celebrating every milestone.

We think she's SUPER VIV! 

Recently, I was reminded of what I had prayed for her, every night before bed – for “Life, Breath and Joy”. I really wanted her to have joy here on earth. I was so afraid to see her have a short life filled only with pain. Five days after bringing her home from open-heart surgery, she smiled for the first time. Joy! Several weeks ago, she laughed (VIDEO HERE!) for the first time while we were doing some physical therapy with her. We were elated!

As we come up to her first birthday, we celebrate God’s goodness in bringing her to us. We love being her parents and we see the joy she has brought us. We know there will be bumps ahead, but we are confident of the fact that she has been given us by God for a reason. She is truly beautiful (something I tell her all the time) and has shown us the beauty of life.

And to celebrate her life:

YOU ARE INVITED!

We will post details soon but Sept 12, 2015 from 3:30-5:30 we will be hosting an open house for Vivien's first birthday!  We want the world to know and to see what God has done. We know there are many of you that we haven't even met that have prayed for her and loved her and wished the best for her so anyone and all are welcome.  Be looking for an invitation in the days ahead and mark your calendar.  Thank you for your prayers and love for our little girl!