grace led in life

Going to try to give an update...It has been a rough couple of days for our girl...sharing what we feel comfortable to, but there is so much more to process ourselves, too. 
Thank you so much for praying for Isla...please keep praying! 

We were up before the sun to check Isla in for surgery on Friday Feb. 26. She woke up smiling, yet had nerves and we could tell she knew what was happening. Sweet girl had a very hard time in the PACU prior to surgery.  Even with a relaxation med, she was fully aware and struggled. The anesthesia lead doctor for Isla's surgery allowed for "mommy induction" - so I was able to take Isla back in the OR as she fell asleep for surgery. She fought hard up until sleep. It hurts so much to see your child struggle and have to continue to bring them to surgeries every six months. We know she will understand more as she grows, but I'm fairly certain it will never be "easier". We have the privilege to know a handful of VEPTR families that are on this journey as well. We are so grateful for their encouragement and are inspired by them each and every day. These kiddos truly are warriors. 
This surgery "was a very major and complex surgery" according to Isla's surgeon. Isla has a large incision on her left side. Dr. Anari had to cut through 5 different areas of Isla's bone/rib fusion to be able to get the movement needed to place a new rod. This makes a "revision" surgery all the more complex and difficult to recovery from. Her fusion "is like a block of concrete" (Dr. Anari). It took a lot to cut those areas. She has extensive fusion from C1 through her thoracic spine and ribs. that area of bone fusion plate, that is her ribs (all fused together), is about an inch thick, so cutting through all that in 5 different areas is so difficult and difficult to heal from. 
We praise God that Dr. Anari was able to remove Isla's first VEPTR, cut those areas of fusion, and place another bigger rod that is trying to hold open her ribcage to allow room for her lung tissue to grow. Her lungs are still so small. Her lungs are about half the size they should be. 
These surgeries are saving Isla's life. We had some deeper talks with Isla surgeon and the other doctors/teams here...they are amazed at how Isla is thriving with the condition that she has...one doctor in particular keeps repeating his amazement to us over and over. It is a great reminder that although this journey is such a difficult one, there is MUCH to be thankful for and not take for granted. We praise God for protecting Isla's life and for her thriving like she is. 

We are so incredibly thankful for Isla's surgeon. We had some really good discussions with him. They are conversations we are both grateful for and saddened from with the heaviness of reality. There is a lot of unknowns with Isla's spine/ribs. Dr. Anari has a clear picture of her highest priority for now: Expanding her ribs in hope that her lung tissue will grow. But there are lots of questions for the future. He keeps reminding us: "We'll cross that bridge when we get there." It is a waiting game and for us...a continued time to pray. He is fighting for Isla and we could not be more grateful for that. He is an answer to prayer. We tell him he is a hero to us. He is always humble and always says that he will do the best that he can. 
Sometimes these conversations feel so scary - they take our breath away.
We continually look back over these last few years and remember the miracles that have taken place. 
Isla is a miracle...her life is a miracle...how blessed are we to get to see first hand these miracles taking place...It takes our breath away in an entirely different way. After surgery, Dr. Anari reported back to us that he was extremely pleased with the outcome of this surgery. (SO THANKFUL!) This specific procedure to cut the bone fusion is rare. No one child ever looks the same. He goes into surgery with plan A, plan B, plan C, plan D, etc. There are always game day decisions that he has to adjust to get the best outcome. This time, he had to make 5 cuts in the bone to open up her fusion to get it loose so the VEPTRs can expand her chest wall. What a blessing. He was very happy that things went smoothly and that there were no emergencies or complications with the surgery. What a blessing! Praise God! 

This journey that Isla has been on is an emotional roller coaster. It's difficult to put into words all we have on our minds and feels impossible to share all that is on our hearts. We praise God that he is with us in our journey when we are brokenhearted and gives us joy through it too. 

On to recovery...this has been very difficult for Isla. She has been in a very miserable place so far, which is to be expected. She has had countless little issues arise that are making for a very painful and heartbreaking couple of days. Isla is a very tough little thing...but this pain has been exponential. She ended surgery with her breathing dropping drastically. The team contemplated leaving her intubated, but because of her injured vocal chord paralysis from another surgery, they decided to extubate. She has been on oxygen since surgery and started her hospital stay in the PICU. Isla struggled with pain, very high heart rate, oxygen levels dipping. This morning (27th) she had an x-ray that showed both of her lungs have areas that have collapsed. She struggled through today, but we seem to finally be getting a better level of pain control. We finally got to hold her this afternoon and her heartrate finally lowered to a better place. She became very stomach sick, so any oral meds have been switched to IV and she was given another med to help her nausea. 

She spent most of today asleep in our arms. It was so good to get her out of her bed and let her relax with us. She was not able to eat or drink anything. She had a fairly good night last night - getting more rest now that pain is better managed. She is still in the PICU as of now, but we hope she is strong enough to make it to the surgical floor of the hospital soon. 
There have been many other little issues, but we are not going to share all of those right now. 
Please just keep praying for our girl. we know she felt so defeated today - but we also know Isla was created to be a fighter. She is incredible and we know God continues to hold her. 

(CLICK HERE) VIDEO OF SURGERY DAY AND DAY 1 RECOVERY

We'd love prayer for: 

• Isla's LUNGS to inflate without the need of a breathing machine.
  For them to be strong and stay healthy.
• For us to know the best place of managing pain control for her.
  To be able to advocate well for all her needs. 
• for Isla to be able to heal with no infection. Her surgeon said this surgery has a much higher possibility of infection with the large incision and all they had to do inside. 
• for Isla to be able to tolerate food and water. 
  
• Overall - for Isla's whole body to be strong and healthy!!! For continued miracles! 
• Please pray for our whole fam...for strength and endurance.