Long time - NO UPDATE. 

Hays turned 9 months old yesterday! He continues to THRIVE and surprise us with his growth and development daily. Getting home was a whirlwind and I meant to update more often but life with 3 kids and many doctors appointments for Hays took priority! 

Hays has been doctoring at Sanford Childrens in Sioux Falls (at the castle). We realllllly wanted to keep his care with Minnesota Childrens after having such amazing care and developing strong relationships with the doctors and nurses there but they encouraged us that Sanford would do a great job and be a closer drive. The shorter drive has proven to be convenient as we have been there often in the past 7 months. 

Cardiology - Everything with Hays heart is looking great! Everyone always comments on how amazing his scar looks. He's had two echocardiograms which showed no red flags. His prognoses for the future is good, he will be able to do all things a "normal" kid can do - run, play sports, pick rock ;) - His Pediatric Cardiologist is confident he shouldn't need any more open heart surgeries which we are very grateful for! Many congenital heart defects require multiple surgeries and Hays' Transposition of the Great Arteries typically only requires one--every situation is unique. He will continue to have echocardiograms and appointments with his Pediatric Cardiologist in Sioux Falls until he is 18 at which time he will switch to a normal cardiologist. 

Neurology & Hematology - He has had the most appointments with his neurologist and hematologist. His hematologist managed his Lovenox (blood thinner) dose and made sure his "blood thinness" (not the correct medical term) was within therapeutic range to help his body dissolve the clots on his brain. Since leaving Minnesota Childrens Hays has had 3 brain MRI's/MRV's to monitor his brain clots. The first MRI (at 3 months old, 1 month after being home) showed GREAT improvement to the clots and blood flow in his right transverse sinus (this vein flows into the jugular vein in the neck which is where Hays ECMO cannula was placed, probably the reason for the clots in his head). Previous MRI's showed NO blood flow in this major vein that drains the brain so seeing FLOW was very good news.

We continued with his shots morning and night in hopes that by 6 months his MRI would show no clots. Unfortunately his second MRI brought on a lot of confusion. The vein showed less flow but they couldn't see a clear clot anywhere - they thought the clot was gone but they couldn't be 100% sure (they had many surgeons and doctors look over the scans) and wanted us to continue on with Lovenox to be sure. His last MRI was on 10/4 and the results were STABLE. This was good news and he could go off Lovenox and the clots were officially GONE after almost 9 months! I could go into a lot more detail but to be honest - its nearly impossible to explain without pictures.

To make a couple of things clear - Lovenox doesn't get rid of the clots - it is an anticoagulant which prevents the blood from clotting. This allows the body to dissolve the clots.  A reminder that when we left Minnesota Childrens he had clots in 3 of the main veins that drain a persons brain, one vein being completely occluded  meaning ZERO blood flow and a complete block. An MRI sounds simple enough BUT for a baby it is an entire (not fun at all) production. This entailed checking in at the castle at 10:30, Hays had to be put under general anesthesia so he wouldn't move during the MRI, which meant he couldn't eat the entire morning (for a baby this sucks), MRI was typically at noon and the day ended being admitted overnight for monitoring post anesthesia due to his age. Luckily his 3rd MRI we didn't have to stay overnight. His neurologist said Hays brain is the best he has seen of kids who have been on ECMO. 

Things are finally slowing down medically and it has been a much needed break from Dr's appointments, pokes, medications, etc. etc. - as of last week Hays is officially off ALL medication for the first time in almost 9 months! I'm sure the little man is so relieved to not have shots in the leg morning and night but let me tell you Jeff and I are EQUALLY as excited to be done with medications. 

He is seen once a month by our local Early Childhood Intervention team to make sure he is staying on track with development after his rough start to life - he is blowing us all away and continues to prove he's a little miracle! So far he is hitting every milestone - some early! 

In more fun news - Hays is CRAWLING, pulling himself up to stand, has 4 (almost 6) adorable little teeth, loves music & when you sing to him (Old McDonald Had A Farm is his jam), dancing (which is just him shaking his arms like a crazy boy), yells MAAAAMAMAMAMAAAA, growls, really loves his sisters (they make him laugh all day long), eating ALL baby foods (he's not picky), being outside (specifically stroller walks around the farm and looking at the cows), and he weighs over 20lbs which is around the 50th percentile! He's come a long way since being off the charts teeny tiny! Overall he is a completely normal little wild boy - you would never know he spent 55 days in the CVICU and had open heart surgery. 

A BIG thank you to everyone who sent so much love and support during the hardest days of our lives. We are still processing. It hasn't been easy, I continue to have good days and hard days. Walking into a hospital makes my heart race and my hands shake. I worry about Hays daily but mostly sit in awe of him - staring at his perfect little face, hugging his precious little body, listening to his sweet noises, taking in all of his little features so incredibly overwhelmed that he is ours, that he is OK, that he survived, that he fought so hard, that he was so brave, that he endured so much, he's a true WARRIOR!