Surprised again! Home Soon.

Hanging with Daddy Today - No tubes!

We continue to be amazed with how well Vivien is doing. They have just told us that she is doing so well that they want to discharge us and send her home tomorrow!! At first both Todd and I felt a little bit uncomfortable with this, wondering if it was really ok, but she is completely off oxygen and she is on just a little pain of medication. She has some swelling (which you can probably see in the pictures - Miss Chunky Monkey) but it is just edema - water weight and should come off in the next few weeks. The nurse reminded us that in some ways, it's actually safer to be at home right now when it comes to germs. There is a lot of sickness  cropping up right now and a hospital is of course one of the worst places to be. Since she isn't needing any machines and we can give her her meds, home is really a great place to be. They have done x-rays, EKG's and Echocardiograms and she just looks great from a heart standpoint. She is breathing on her own and her oxygen saturations are good as well. So here we go!

Tuesday afternoon she was only on Tylenol and had a bit of a bad night Tuesday so they gave her some more oxycodone which helped settle her. As of today though, she has only been on Tylenol since 9:00am and is doing great. She had a nice little nap and hasn't been fussy. They are sending us home with a little more oxycodone but we will only use it if we need to and she hasn't required any morphine.

The only downside is that we won't be able to watch the Superbowl at the hospital. (We don't have a TV). Such a bummer huh? As you can see we have our priorities straight. (Don't worry - believe me, we'll make sure we get to watch it.)  Go Hawks!

More Fun Stories: The day before her surgery Vivien gave me what I would consider, her first responsive smile. She has smiled before but never one that I know was in response to mine. Todd said that he didn't think she did, because she'd told him that she would save her first smile for him, but I know better....

Todd saw the surgeon this morning and thanked him again for all his wonderful work. The surgeon responded, "Vivien makes everyone look good!"

One of the nurses asked if we sing "Jesus Loves Me" to Vivien. Todd told her that we did. She said that when she was holding Vivien, she started humming it to her, and she immediately settled down. Pretty cute!

First time holding her after Surgery Tuesday

Viv and Daddy Today!

Here are Todd's medical journal notes from Monday and Tuesday if you are interested in hearing a little more technical side of what is going on with Miss Viv.

1/26
Today, Dr. Mohammed Nuri repaired Viv's large VSD with a gortex patch. Post-op there showed no signs of residual VSD (huge praise!). During a recent echocardiogram, it was also found that the pulmonary valve leaflets were partially fused together. During the procedure, he performed a commissurotomy, improving the flow through the pulmonary valve. The fact that they were fused was like an automatic "ring" which limited flow to the lungs, preventing excess flow to the lungs. Sometimes, they will put a ring to limit the flow through the valve, but because of the way her leaflets were fused, this was already done! Amazing to see God at work! Dr. Nuri also removed some excess muscle tissue approaching the pulmonary valve.
Viv was extubated about 10pm tonight and continued with morphine an tylenol for pain. She was up a couple times during the night, but was easily consoled.
1/27
Vivien continues to impress the staff here. We got a phone call today from Dr. German, saying he received a phone call from a Dr. here at Children's asking if it was confirmed that Vivien had T-18. He was so impressed with her recovery that he doubted her diagnosis! Her arterial line, central IV and pacing wires were removed this morning. She remains on canula with .5 lpm. Without it, at first, she would drop to the high 80's. Tonight without it, she would drop to 95%. They said this is due to some fluid in her lungs from being on bypass. The lasix should help with this over the next couple days.  We were moved down to the floor this evening - another great sign of her progress!

We also wanted to ask for prayer for a friend of Vivien's who has T-18.  Noah is an adorable litle man one month older than Vivien.  He and his family live in Spanaway and we have been following each other on Facebook but haven't met.  Lo and behold, he and Vivien were both scheduled for the same week for open heart surgery here at Children's.  We were hoping to meet soon but we will be leaving and they will be coming tomorrow.  His surgery was supposed to be today but has been rescheduled for tomorrow.  We'd love for your prayers for him as well.  You can follow him here at Noah Nicholas's Journey.

Once again, thank you for your continued prayers. Praise God with us. We can't believe how kind He has been to us in His "yes" answers to our requests. Thank you for prayers for a smooth transition home, and also for wisdom as we help her recover well in the weeks ahead. We will keep you posted!

More Good News!

Tuesday, Jan 27 2:00pm
Last night they were able to extubate Vivien! They took the breathing tube out at about 9:30pm and now all she has is a high flow canula with a little oxygen which is much more comfortable for her.  That was not expected to happen until 1-3 days after the surgery and she has done so well.

The other good news is that she is going to actually come out of the ICU and go to the "floor" most likely today.  We were told she'd be in the ICU for 3 days and then move to the floor which is less intense care.  Again she is doing so amazingly well that she is already ready to move to the floor.  We are just continually in awe of how God is answering our prayers with "yes".  We know that He is good and we will praise Him whether our prayers are answered with yes or no, but we are so grateful for How he is answering.  As I write this, they just finished taking out more of her tubes and are preparing to move her.  We also spoke with the surgeon.  We appreciated so much his care and attention to detail and he is very pleased with how well Vivien is doing

Funny story.  In addition to this, we were delighted to hear that our pediatrician received an interesting call from one of the doctors here at Childrens'.  We don't know who it was and don't need to, but apparently the doctor was asking if Vivien had gotten tested for T-18 after she was born.  She looked so healthy and seemed so normal to him that he wanted to make sure that she really did have that extra chromosome diagnosis that she received in the womb.  We have seen the tests and do know that she does have T-18, but it made us smile and to continue to thank God that Vivien is surprising the doctors.

Todd and I were talking today about what we prayed for on the way to the hospital yesterday.  We both realized that as we praying together we each prayed at different times that Vivien would do better than expected, that there would be no complications and that she would heal more quickly than normal.  I remember praying this aloud, but thinking inside about her T-18 diagnosis, wondering if she would actually heal a little slower and thinking of stories we've heard of complications.   I love that we don't have to have perfect faith for God to answer our prayers.  I was thinking again about 2 Chr 15:15 (MSG) - "Anticipating the best, they had sought God, and He showed up, ready to be found."  I had read this yesterday during the surgery.  We prayed for the best and I really anticipated that she would come through well and honestly had a peace with very little anxiety.   But although I was praying aloud that she would do better than expected, I can't say I was anticipating it.  I can't say my faith was that strong.  I love that Jesus takes our mustard seed of faith  in speaking out the words at least, and grows it and answers, proving His faithfulness even when we don't always have faith like we'd like to have!

Again - if Vivien had not done well and the worst happened, we still know that God is good, trustworthy and will redeem all things.  But I am so grateful for how He strengthens our faith no matter what, and takes our little mustard seeds and grows them.

We also know that He is listening to the hundreds if not thousands of people praying for her.  We were humbled and overwhelmed by all of the facebook shares, comments and the visits to our blog.  We have been incredibly loved and supported and we know that God hears the prayers of His people.

In other news, Vivien is looking forward to celebrating the Seahawks win this coming Sunday. ;-)  I ordered a little Seahawks patch that should arrive by Saturday to put on a hat or onesie as she doesn't have any Seahawks gear.  Russell Wilson usually visits Childrens' Hospital on Tuesdays.  Most likely he won't be visiting right after the Superbowl, but we can always hope right?  We love the Seahawks, not just because of their wins, but because of their heart.  After their win last Sunday a friend of mine wrote a beautiful blogpost on the Seahawks, the Gospel and Grace here.  Go Hawks!

We will continue to update on Vivien here and on Facebook.  Thank you for your continued prayers. We are excited that we will get to hold her this afternoon (more pictures coming!) as well as move to the floor.  Praise Him with us for all that He is doing for Vivien!  We are so grateful for what He has done and continue to praise Him for holding her life in His hands.

Updated - Open Heart Surgery - Thank you for PRAYING!

9:00 pm Jan 25
Headed out at 5:45am tomorrow morning. Open heart surgery will start sometime between 8:00am and 9:00am at Childrens' Hospital Seattle and last 4-5hrs so please be praying throughout the morning for our sweet girl. We are expected to be there a minimum of a week. Feel free to share this request with others. Jesus is holding her heart and we trust Him. Thank you for your prayers and support. We will be updating here and on Facebook throughout the day.

UPDATE 9:30am Jan 26 - They took her into surgery at about 8:15 and they said it would take about 45 minutes to get her all prepped with IVs and anesthesia. They are doing a Tetrology of Fallot repair - VSD, Pulmonary Valve,and Overriding Aorta.  Here are a few pictures in her pre-op gown. We prayed with her and gave her kisses and sent her off with the anesthesiologist.

 

UPDATE 2:00PM Jan 26 - Vivien is out of surgery!  We just spoke with the surgeon and he said that everything went well.  They were able to close the VSD and repair the pulmonary valve.  He used more technical terms that Todd can elaborate on later but he was pleased with how well everything went.  THANK YOU for all your prayers.  It was overwhelming to see the hundreds of messages and shares on FB, many from people that we don't even know.  Thank you for loving us and Vivien through this. We ask that you continue to pray that she will start to show signs that she is able to breathe well on her own.  She was on a heart / lung machine during the surgery.  She is off now, but is still sedated and intubated and the goal is for her to wake up and be able to breathe on her own in the next 1 to 3 days.  We have not seen her yet, but we've been told to expect lots of tubes and wires.  PRAISE JESUS with us that surgery went well and continue to pray that her extubation (breathing on her own) will go well because that is the next critical step.  We are so grateful for what Jesus has done and expectant for what He will do.  2 Chr 20:5 (MSG) When the worst happens... and we take our place before this temple, (we know You are personally present in this place!) and pray out our pain and trouble, we know that You will listen and give victory.  2 Chr 15:15 (MSG) Anticipating the best, they had sought God - and He showed up, ready to be found!

UPDATE 8:30PM Jan 26 - Vivien is amazing everyone.  We got to come see Vivien soon after the last update.  The anesthesiologist said that she was doing well but that she would most likely be extubated by tomorrow morning at the earliest, possibly a day or two later depending on how she was doing.  Because of her prognosis, they wanted to err on the side of caution and not remove it too soon.  However, as the afternoon progressed, it became evident that Vivien was doing amazingly well.  She started trying to take some breaths on her own early on and was moving and more alert than they suspected.  She even had a small bowel movement.  The nurses and doctors have been talking about how remarkable she is doing and how well she looks.  She has been breathing on her own quite a bit, and although she has some other pain meds, they have completely turned off the morphine for a short time to see if she does well and are talking about possible extubation actually tonight.  We shall see.  In the meantime we have been telling the medical team here about all of the people who are praying for her.  There is a reason that she is doing so well and we are so grateful to God and to all of you who are praying.  We will check in with you tomorrow but in the meantime we are praising Jesus for her doing so well!

Vivien's Heart Surgery Date Moved up to this Monday -Call to Prayer - By Todd

Our Sweetheart!

As of today, Vivien is 4 1/2 mos and 9 lbs 4 oz and finally in some 0-3 month clothes! She is continuing to beat the odds of her diagnosis and has proven to be a fighter!

We just got a call yesterday and Children's needs to move her surgery date up to this Monday, January 26 at appx 8:00am due to scheduling conflicts.  They will be repairing her VSD (hole in her heart) and overriding aorta.  Every surgery has it's risk, especially a heart surgery but the doctors are confident that the process will go smoothly.  While we have some nervousness, we are grateful for skilled doctors and even more confident that God has His hand on Vivien and He is trustworthy.

We just wanted to thank all of you for the help and encouragement you've given this past year. While Molly and I have been stretched in so many different areas, we couldn't imagine what this time would be like without all the prayers and support of family and friends. Thanks for the kind and encouraging words. Thanks for having hope and cheering Vivien on.

Tonight (Thursday), the elders from our new church - Highlands Community Church are coming to pray over and anoint Vivien at our house. This Sunday, 1/25, we'll be having a day of prayer and fasting for Vivien and her surgery and we'd love to have you join us if you feel called. We know that no matter what lays ahead, God has been faithful and will continue to give grace. Please continue to pray for wisdom and care in the surgery and complete healing of her heart.

There have been a few times on this journey when we didn't think God was at work or feel He was near. Looking back, it's obvious His grace has been on us. While it's not the journey we wished for, we wouldn't have it any other way. We recently sung a song at church, that really echoed how we feel right now.

Never Once

by Matt Redman

Standing on this mountaintop

Looking just how far we've come

Knowing that for every step

You were with us

Kneeling on this battle ground

Seeing just how much Youve done

Knowing every victory

Was Your power in us

Scars and struggles on the way

But with joy our hearts can say

Yes, our hearts can say

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful

Kneeling on this battle ground

Seeing just how much Youve done

Knowing every victory

Was Your power in us

Scars and struggles on the way

But with joy our hearts can say

Yes, our hearts can say

Never once did we ever walk alone

Never once did You leave us on our own

You are faithful, God, You are faithful

You are faithful, God, You are faithful

We have cheeks!

9 pounds!

Physical therapy

On her way to the doctors yesterday

Lastly - Go hawks!

We won NFC Championships!