How can it be?! My little princess. You have changed my life and you have changed your mommy’s life forever, too. It’s hard to believe a year ago, I saw your mommy get wheeled away to prepare for your birth. I’ll never forget pacing back and forth waiting for my turn to go back to the operating room. I’ll never forget peeking over the “tarp” as they brought you into this world. I’ll never forget them handing you over to me and introducing you to your beautiful mom and then having to hand you back as they wheeled you away to the NICU. I’ll never forget the news that your mass, that we were monitoring for weeks already, was entirely within your little liver and that the doctors in Springfield couldn’t give you the care you needed. I’ll never forget the feeling that overwhelmed me of being reunited with you after a 3 hour ride to Lurie Children’s NICU in Chicago. You are a miracle. We know that all life is a miracle but how God has healed you this past year is truly a miracle! I’ll never forget Dr. Lautz’s excitement when he shared with us that your AVM was disappearing. Your miracle is one we will hold onto forever, one that will keep us close to God when we go through challenging times in the future.
Sadie Lyn, you bring us so much joy. You make your mom and I smile and laugh all the time. When you’re not with us, we talk about you and still can’t help but smile.
You have made me fall more in love with your mommy, and more importantly with Jesus. I pray everyday that we would be good and loving parents that point you to the eternal love of our Savior. You’re only one year old and you have already brought us to our knees to praise our Lord. I’m so proud of who you are becoming and love your sweet smile and personality.
Sorry for not updating you sooner! I posted on Facebook, but forgot to post here.
The miracle continues! Ultrasound tech saw nothing; as in it is all gone! We’ll hear official report probably next week. THANK YOU FOR PRAYING!
In other news,
Sadie will be featured in the August September or October edition of Lurie Children’s Heroes Update. Over 120,000 people are subscribed to this e-newsletter. To God be the glory! Click HEREto read last month’s issue. May God use Sadie’s story to comfort and inspire people.
Sadie is getting so big! 11 months old already. It has been about six months since God revealed His BIG miracle. We go up to Lurie’s Children tomorrow, Friday July 8th, for another ultrasound of Sadie-Bug. We hope and pray that the mass is ENTIRELY gone and that none of it has grown back.
She is as healthy as can be. We love watching her grow and can’t believe she will be 1 year old next month! This past year has flown by.
We had a great day yesterday! All of the specialists were so impressed. They decided to do lab work to see if Sadie has hypothyroid; a concern with patients with liver AVMs. Results came back fine. Sadie was so happy the entire time and made them all melt. We were there until 10:30 a.m. The doctors and specialists all met for an hour after meeting with us and decided to not meet with a genetics specialist to see about HHT. They said her two birthmarks on her head are not related to her liver AVM. She does have a very small hemangioma (smaller than the tip of a ball-point pen) on the back of her neck that will disappear on its own. Our surgeon, Dr. Lautz, went out of his way to say “hi”. He’s a really nice guy and was in his scrubs. We go back in July for ultrasound and to follow up with the surgeon again.
Tonight we head up to Chicago for an early 7 a.m. appointment tomorrow, February 17th at Lurie Children’s Vascular Lesion Center. This clinic meets monthly and Sadie’s case will be reviewed by over 20 specialists and will last approximately 3 – 4 hours. No scans or anything invasive will occur, they’ll review her past MRI and CT scan along with other medical records. This clinic will provide us with answers if Sadie needs to be evaluated for the possibility of other AVMs in more critical areas or her body (i.e. brain or lungs). Her surgeon informed us during our last meeting that the possibility of other malformations are slim. She was born with a birthmark on the back of her neck. A dermatologist is one of the 20 specialists we’ll meet tomorrow and they’ll be taking a look at that, too. The video below (click here if it doesn’t load) really helped me understand what to expect tomorrow.
Praise God. We are in shock. The doctors are in shock. Our little Sadie, though she may not realize it, has experienced a miracle. In order to get a more updated visual Dr. Lautz, Sadie’s surgeon, ordered a CT scan today before her scheduled surgery on Monday only to find that her AVM has shrunk significantly. Sadie’s once massive AVM consuming 1/3 of her little liver has SHRUNK to consuming a mere 5%! NO MORE SURGERY ON MONDAY!! He is very optimistic she won’t need any procedure at all. Sadie’s situation was already rare; now she’s redefining what the medical field knows about AVMs. AVMs were previously believed to never go away on their own. Dr. Lautz said medical experts used to believe that AVMs and hemangiomas were completely different, but are now realizing they share many of the same properties and might in fact be the same thing.
We will follow up and get an ultrasound in 6 months. The doctor has some more consulting to do with his team and other doctors internationally. Dr. Lautz says Sadie may be in some case studies in the future. As for us, we’re speechless. Thank you EVERYONE who has prayed for our little girl. God is always good. God is always listening and God is still working through His people and their prayers.
During our last visit, Sadie’s surgical team wanted updated images to plan her surgery and to make sure nothing has “drastically” changed since August. The CT scan is scheduled for this Friday, January 22nd. Sadie will be sedated using general anesthesia and will need to be monitored for 12-24 hours afterward. We will be staying at Ronald McDonald House near Lurie Childrens (RMHLC) starting Thursday night and could be there as late as February 2nd, depending on how well she recovers from her surgery on Monday, January 25th.
Thank you everyone for all your prayers. You have been so encouraging and we have seen God’s love through you all. We will do our best to keep you up-to-date through here and/or on our Facebook walls.
Today our little family met with Dr. Lautz, Sadie’s liver surgeon, to go over all the details related to her surgery on January 25th. He explained that when it comes to liver surgeries like her’s they look at the liver in 4 quadrants. If there are any abnormalities in a quadrants that they go ahead and remove that entire section of the liver. That being said, they will be removing half of her liver even though her AVM consumes just one-third. We will return to Lurie’s one more time prior to surgery to get a CT scan done so that the surgical team can plan her surgery thoroughly and to make sure no “surprises” have developed since her MRI in August. As we get closer, mommy and daddy are getting more nervous. We thank you for all of the encouragement and prayers the past 5 months and ask that you please continue to pray for all three of us.
Other information regarding surgery:
The liver is the only internal organ that possesses the remarkable ability to regenerate. It is known that as little as 25% of the original liver can regenerate back to its full size!
Sadie’s surgery will take 4-5 hours and will happen early morning.
Recovery could take as long as a week, but we could be out of there in 4-5 days.
80% of children are admitted to the normal recovery ward after a surgery like this and 20% are transferred to ICU.
There is a 50% chance Sadie will need a blood transfusion so a central-line I.V. will be put in. Again, normal for a surgery like this and because of her size.
With any abdominal surgery like this, there are feeding restrictions. She will not eat anything for 1-2 days following surgery but will be supplemented through I.V.
In April we will meet with a genetics counselor to see if Sadie has a blood disorder called, Hereditary hemorrhagic telangiectasia (HHT). HHT leads to abnormal blood vessel formation in the skin and often in organs such as the lungs, liver, and brain. We will also learn if she needs any more tests done to rule out AVMs in other parts of her body.