We just saw Lily for the first time. She looks pretty good, considering. Her face is swollen from having been face down for 5 1/2 hours. Poor baby looks like she was in a fight–but you should see the other guy! Ha! She is still groggy but was awake a little bit. She is the toughest, most badass chick ever. I cannot believe how much she has been through but still has fight left.
She will most likely remain in PICU for 24 hours, then can go to the step down unit after that if she’s doing well. I am going to spend the night in her room tonight. We did get a room at the Ronald McDonald House so Todd is going to go there tonight and get some sleep. I may go over there tomorrow during the day and get some sleep also.
Thanks again for your prayers and support!! We will continue to update!
The surgeon just came out and said Lily is out of surgery and everything went very well and there were no complications. Praise God! We are still waiting to go back to be with her. Thank you all for your prayers throughout today. We will update later after we get to see her. Much much love from us.
So…to pass the time and keep from freaking out, I created a playlist of some songs that I love and that I thought would encourage me and help me trust and have faith. Here are some of the songs:
None But Jesus–Brooke Fraser
Blessed be Your Name–Matt Redman
Take Heart–Hillsong United
Came to My Rescue–Hillsong United
10,000 Reasons—Matt Redman
You Never Let Go–Matt Redman
In Christ Alone–Kristian Stanfill
Desert Song–Brooke Fraser
With Everything–Hillsong United
Broken Vessels–Hillsong Worship
I am Not Alone-Kari Jobe (I played this for Lily before her surgery)
They just took Lily back to the OR about 10 minutes ago. We had been back in the prep area with her for about an hour and a half before that. The anesthesiologists, surgical residents, and ortho nurse came in and took her vitals, asked a ton of questions, and answered our questions.
Only one of us was allowed to go back to the OR with her, so I was with her right up until she fell asleep. I had to put on a gown, mask, and hair cover (Todd took a lovely picture of me, which I have forbidden him to publish). I got to stay with her and talk to her until they put the oxygen mask on her (which she did not like). The team has a little “cue” they use to let the parents know when it’s time for them to leave–“give her a little kiss on the cheek!” That is their polite way of saying “get out, crazy mom!” hahaha So, I left and told them all to take care of my girl, which they all promised to do.
We got some more (gory) details about the procedure. It is good to know more about what they will actually be doing and the affect that will have on her body. (Squeamish alert: Do NOT read further if you are squeamish!). So, they will drill a hole on each side of the top of her pelvis, then they will insert two screws, which will be capped. They will insert the titanium rods into the caps on the screws and so the rods will be “fused” to her pelvis. The rods will be attached to her spine as well. She will still be able to bend over, but only from the waist and she will not be able to crouch or curve her back. Otherwise, she will have pretty normal movement. Pain management and infection prevention will be the top priorities for the next few days, but the nurse said she should be able to get up in her chair within the next 24 hours or so.
The team would not give a definite on how long the procedure will take. The ortho nurse said she will call us to let us know when the incision has been made, and then every two hours after that. It may be up to an hour and a half until they actually do the incision.
So, we’re sitting in the lounge and waiting and praying. Thank you for all of your prayers and support so far. Keep the prayers going!
It is zero dark thirty and we are on the road to Baltimore. It is sooooo dark outside this time of night/morning. Lily did not sleep at all, and I must admit I did not either. She is pretty calm right now, though. I am pumping lots of iced tea to try to wake up. May have to chug a five-hour energy later!
Thanks for your prayers and we will update when things get underway.
Hello everyone! We are one day away from Lily’s surgery. Todd and I have been busy today with packing, errands, and just wrapping up some last minute details.
Lily’s surgery will be performed at the Bloomberg Children’s Hospital at Johns Hopkins in Baltimore. We have to be there at 5:30!! A.M!!! Don’t they know I am NOT a morning person?!! We have to leave home by 3:30 am to get there by then. Lots of caffeine will be in order!! We are not sure when the procedure itself will start. The surgeon said it will take 5-6 hours. She will probably be in Hopkins for about 7 days and then, if she is stable enough, she’ll be transferred to Kennedy Krieger for a few weeks of rehab. We aren’t sure yet how long she’ll be in KKI.
The procedure itself involves an incision into Lily’s back. Her spine will be straightened and then a rod will be placed on either side of her spine so it stays straight. The surgery will be performed by Dr. Sponseller, who is the Chief of Pediatric Orthopedic Surgery, and he told us he has performed about 3,000 of these procedures. We know she is in the best possible hands, but please pray for the surgeon and his team as they perform the procedure!
We will be posting throughout the day to update on what is happening. And speaking of updates…we will be transitioning away from using our Carepage. We will now be posting all updates here instead. We feel that this will be a more user-friendly way for you to follow Lily’s progress. This site is a lot more mobile-friendly, so if you have a smart phone, it will be much easier for you to read updates on it. You will be able to receive updates by signing up for email updates. You will not need to create and account or log in to read the posts–easy peasy! You can receive an email each time we post to the blog with text or pictures and you’ll still be able to make comments (and please do–we love reading them!). This site is also tied to our Facebook page–Love for Lily Higgins–and our Twitter account: @lilyghiggins. Each time we post here, it will automatically update our Facebook and Twitter accounts. So, you have three ways to keep up-to-date on what is going on with Lily!
Thank you all for the love and support you’ve given us for these past three and a half years. It means the world to us and has given us such hope and comfort through the hardest of times. We are so grateful for every act of compassion, generosity, and kindness that’s been done for us.