Celebrate Sawyer's Legacy: Support a Family

Hi everyone! Sawyer’s 2nd birthday is right around the corner 2/15 and we would love to give a gift in honor of her. This gift will go to the family that is currently in Sawyers old hospital room at UCSF.

While we were in the hospital with her for almost five months we received many donations from organizations and also private parties. These donations meant to the world to us and allowed us to solely focus on Sawyer. We would love to bring a little joy to a family that is in need ❤️ thank you everyone!

Sawyer’s Story:

Before Sawyer was born it was suspected that Sawyer was developing a heart defect called aorta stenosis. We were told she could be delivered locally and when she was born her valve could possibly just open up with her first breathe or if she showed any signs of struggling she would be transferred right away. On 2/14 I went in for a non stress test and it was found that I had preeclampsia with severe features and had to deliver right away. On 2/15 at 8:55 Sawyer was born and needed some medical assistance right away. For about 45 minutes the NICU team helped her and she became stable. We were able to spend a “normal” 18 hours together. Sawyer started to show signs of struggle and had to be transferred to the NICU. We were told Sawyer had a PDA (hole in her heart) and it should close in a few days and she should be home in about 7-10 days. For two weeks Sawyer got worse each day and finally somebody told us we needed to demand a transfer.

On 3/1 Sawyer was transferred to UCSF. As soon as we arrived we meet with the cardiology team and we were told Sawyer is very sick. The cardiologists told us that she had multiple heart defects, her main one being hypertrophic cardiomyopathy and they thought that she may have a genetic condition called Noonan Syndrome and she would most likely need a heart transplant. During this meeting we saw Sawyer code for the first time and we were devastated. We were told they were worried how her night was going to be.

A few days went by and one of our very well used terms “critically stable” was born. Sawyer was doing okay and the worries and fears were lessening. We finally got the genetic results and found out that Sawyer had a de nova case of Noonan Syndrome PTPN11. This was helpful and gave us a lot of hope that we were going to be able to get everything under control.

After multiple attempts, Sawyer’s PDA was closed and this helped her tremendously. She was having less episodes and we were moving in the right direction. We now had to figure out why her body was developing so much fluid.

In April Sawyer had a special procedure called a lymphangiogram. It was an exciting day in the ICN. It was a rare procedure on a baby and we were excited to find out the results to see how we could treat her. We found out she had a rare condition associated with Noonan Syndrome called lymphangiectasia. Her lymph system was very abnormal and was overproducing lymph fluid. After a lot of collaboration with hospitals around the country we found out that Sawyer had a rare form of Noonan Syndrome called Noonan syndrome with multiple lentigines and a lot of the conditions she had are associated with this diagnosis. We found an off label drug that we could try to treat Sawyers heart condition and lymphatic condition.

Sawyer was “critically stable” and her team was starting to talk about getting her home. We made the decision to have Sawyer get a tracheostomy (she also had an airway condition called severe tracheobronchial malacia). If Sawyer had a trach it would make it possible for her to come home and have the best quality of life.

On 6/7 Sawyer had her trach surgery and we were able to see her full adorable face for the first time since she was born. We were so excited for what the future had in store for us. A few days after Sawyer’s surgery she was having a really hard time recovering. Her team was working around the clock to get her in a good spot. During one of Sawyer’s episodes we heard a doctor say that her heart had gotten worse and it was going to continue to. We had a family meeting and we learned that Sawyers cardiomyopathy was almost completely obstructed. We had to stop her trial medication and she could no longer eat anymore due to the medications she was on to keep her heart functioning. We also received the tragic news that she was no longer a candidate for a heart transplant because of her lymph condition.

The last week of Sawyer’s life was the best week our family ever had. We got to cuddle with Sawyer in a big bed, listen to music therapy, watch movies, and play with Carter in her hospital room. On 7/11 Sawyer got to go outside to the patio surrounded by her family and UCSF family. A music therapist was outside playing our favorite songs and she started singing the song somewhere over the rainbow. I whispered to Vince, “she’s in heaven now I know it” and her doctor came over and confirmed it. She went home to heaven and will forever be the biggest piece of our life journey. We are forever grateful for the time God gave us with her.