Hello friends! Our last update left off with getting ready for Lucy's first orthopedic surgery. The tentative plan at that point was to try and do both knee reconstructions at the same time. Unfortunately, and fortunately now seeing how everything played out, the doctors were only able to work on one of her knees. The surgery was expected to last around 3-4 hours but after getting in there and seeing the extent of her physical anomalies, they ended up spending a little over 6 hours working on our girl. I'll spare most of the details but our doctor mentioned that her muscles were all matted together and that he spent a lot of time separating and rerouting those muscles and her blood vessels in addition to shortening the femur and lengthening the quadriceps. Thankfully our doctor is very thorough and was very intentional about every step he made while in the OR. After finishing the surgery they placed her in a cast from the waste down, but after taking x-rays with the cast on, our ortho doc didn't quite like the way things were positioned. So, they took the cast off, shortened the femur a bit more, and placed a new cast back on. After what seemed like an eternity waiting, we were finally reunited with our Lou! Thankfully we only had to spend one night in the hospital and were able to continue helping her heal at home. The first week post-op was really rough. Probably the hardest week we've had since she's been born. Trying to control her pain and keep her comfortable while staying strong for her and being present for the boys was challenging to say the least. After that first week though, little by little, she started to perk up and now she is back to her happy, smiley self. These babies really are so resilient!

Since the surgery we've just been trying to settle in to this new normal of caring for a baby who has a big  cast from the waste down and a g-tube. Diaper changes, keeping the cast clean, and making sure the top part doesn't press on her g-tube have proven to been the hardest parts. But knowing this is only temporary and that everything we are doing is in her best interest helps us keep trucking on! After the first two weeks out from surgery, she had a cast change in the OR which was so nice to be able to get a fresh new one on and have them check her wound. While she was under anesthesia they did an MRA  ( Magnetic Resonance Angiogram) of her left knee to get a better look at her blood vessels before deciding on a date for surgery on that side. It's been so humbling to think about every little detail that goes in to preparing for her surgeries. When you first think of "fixing" a dislocated knee it doesn't sound too complicated. But because sister was born with so many physical abnormalities on the inside, you have to take things into account that didn't even cross my mind when I thought of what her surgeries would be like! Things like blood vessels, and blood supply to the extremities, and arteries, and all of the body parts they are working with during the knee reconstructions. When you realize that every little detail counts, it makes you so thankful for trained surgeons who have our girl's best interest at heart.

This week was exceptionally challenging but now that I am processing through it, I am realizing that these unexpected mishaps might just be the new normal for us moving forward. On Tuesday, we experienced our first G-tube scare when Lucy's g-tube button got pulled out on accident. Normally this wouldn't be too big of a deal given the fact that I've been trained on how to put it back in and it's honestly not hard at all. BUT the problem was that we didn't have a spare button to replace the one that was pulled out, and we couldn't put that one back in because the balloon on the inside that holds the button in place was busted. All of this to say we ended up having to take her to the emergency room to get it put back in. The main concern when the tube comes out like that is that if it is out for too long, the stoma will close up which would require another surgery to open the hole back up and put the tube back in. Thankfully we got there in time and a surgical resident was able to place a new tube with out any problems. On Thursday, I noticed that her cast had a really foul odor to it. I couldn't figure out what was going on and I kept racking my brain trying to think of what the smell could be. On Friday morning, after letting Taylor take a whiff of what I was smelling, he encouraged me to call our ortho doctor for advice. He encouraged us to come to the hospital to have her leg checked out given that bad odor can be a sign of an infection. After smelling what I smelled, our doctor thought it would be best to cut a window in her cast to check the wound. Thankfully the wound didn't look to bad, but it had busted open and was draining which was what we were smelling. To help the healing process, we made the plan to leave the wound open and let it heal from the inside out. We were trained on how to do the dressing changes at home which is such a blessing that we were able to avoid a hospital admission! We will follow up tomorrow to check on how things look! 

Another big update is that Lucy's surgery on her left knee has been scheduled for April 8th. On March 14th they will take off her current cast in clinic and switch her to a splint that can be taken on and off at home. I'm so excited that we will be able to have about 2 weeks free from a cast before her next surgery! 

We have started therapy back at the Bell Center and have introduced some purees for her to take by mouth! She seems interested and we are hopeful that she will continue to show interest as we introduce solids. We have a follow up in the cleft palate clinic in April, but surgery to repair her cleft won't be scheduled until after she is a year old. Next week we will have a follow up appointment with neurosurgery for one more x-ray and to go over the MRI of her c spine that they did a few months back. If everything looks stable, we should be able to be officially discharged from the neck brace. We also saw the sleep study doctor this week who encouraged us to still try to use the oxygen at night but to also not stress about it if she wont keep it on, which she wont. He reiterated that the oxygen is just for quality of sleep (even though she sleeps great through the night without it) and not because her saturations drop. I'm hopeful that our follow up sleep study in April will show that she really doesn't officially need it anymore! 

We are continuing to see God's hand in the way Lucy's story is unfolding and in the way mine and Taylor's marriage has grown stronger over the past few months. We are celebrating TEN years of marriage in April which seems impossible,  and I honestly  feel that Lucy's life and all of the ups and downs we've experienced as parents over the past few months have brought us closer than we ever have been. If you have been praying on behalf of our marriage, THANK YOU, and keep it up! We really do feel every single prayer. As always, thank you to everyone who continues to support us and encourage us and who are choosing to walk along side us! We love y'all! 

Hannah