Jan 17, 2021 Latest post:
Feb 18, 2021
We have been wanting to put this site together for months. It took awhile to be able to share everything we wanted to share. We plan to use this site as a way to keep all our family and friends updated who have been so wonderful throughout this past year. Please make sure to hit the FOLLOW button to stay up to date with Ava's progress. We can't thank all of you enough who have been praying for Ava Grace and our family! We feel every one of those prayers. God bless you all.
We have set up a GoFundMe page because we realize that people would like to help us. Please do not feel obligated to donate. God has provided immensely for all of our needs during this time and we are sure He will continue. If you are interested in supporting Ava and our family in this way, please visit our GoFundMe page under the Ways to Help Tab. Please note that a donation made to the CaringBridge website under "tributes" does not support Ava's NICU stay and her medical expenses.
The words below tell the story but the pictures tell more than we can express. Click Gallery and scroll to the bottom to the end to see where the story begins . . .
I have known I wanted to name my future daughter Ava Grace for years. I fell in love with the name the first time I heard it about 10 years ago. After hearing the name Ava, I soon decided I loved the middle name Grace, and one day, I just knew I would name my daughter Ava Grace. Fast forward to 2019. We already had our beautiful baby boy, Jacob Zane. We knew we wanted to have another baby and planned to try soon after one last vacation in late spring of 2019. While on vacation, we came across a bottle of wine named Ava Grace with an absolutely beautiful label. We both thought how perfect and fitting it was. So we enjoyed it together that night. Later that summer, I became pregnant, and we waited to find out the gender until birth. My due date was 3/20/20. November 13th, 2019, I went to the hospital for a second anatomy scan ultrasound because they couldn’t see everything during the first one. The doctor told me it was nothing she was concerned with at the time and that the first anatomy scan was done a little early but recommended I go to the hospital for the next one. At this second scan, we were told the baby appeared to have only one kidney. The doctor also told us they could not see all the vessels of the heart that should have already been formed. The doctor set us up to see a cardiologist for a fetal echocardiogram on 11/15/19. That day, after an extensive echo, the doctor told us she could not find the left pulmonary artery at all and the right pulmonary artery was extremely small. She also could not see the 4 pulmonary veins. She told us the baby would not survive after birth like this. She brought up the topic of terminating the pregnancy and told us Ava may not likely survive much after birth. We had two weeks to make that decision. She also set us up to have a second opinion at UCLA for another echo with another cardiologist that following Monday 11/18/19. The doctor at UCLA told us he thought he saw the left pulmonary artery but it was extremely smaller than the right pulmonary artery that was also small. He said he could not visualize the pulmonary veins but told us the baby may have something called total anomalous pulmonary venous return. He said surgery can be done for the pulmonary veins but there is no procedure for the pulmonary arteries. He also told us he has seen miracles happen. "...Do not be afraid or discouraged because of this vast army. For the battle is not yours but God's." 2 Chronicles 20:15. My perinatologist also advised me to have an amniocentesis and had this done the same week. We were told the full results would not be done for about a month. We decided together that there was no way we could do anything except continue with this pregnancy and pray for a miracle. So that is what we did, every day and continue to do so. "...With man this is impossible, but with God all things are possible." Matthew 19:26. "If you believe, you will receive whatever you ask for in prayer." Matthew 21:22. We believe we have been blessed with miracle after miracle. One of my good friends asked me what names I had picked for boy or girl. I told her Ava Grace if it’s a girl and we really didn't have a name if it's a boy. I shared with my friend that I have loved the name Ava Grace for about 10 years and love the meaning, to fly, which I took to mean travel/explore. She told me I think you should look up the meaning again and she was pretty sure Ava means life. I did, and Ava means LIFE! We accidently found out the gender by the amniocentesis results and our baby was now Ava Grace. I felt God say Ava will live by the Grace of God. The amniocentesis came back in early December 2019 and showed a rare genetic condition that runs in Brandon's family but only presents as a tear duct problem in his family. They said it explains the 1 kidney but not the congenital heart defects. In mid December 2019, Brandon had an idea to try to find that Ava Grace wine bottle again to use as gender and name reveal to our family. The first grocery store we tried on the way home from church that morning had the Ava Grace wine. Later, we tried other locations of this store and other stores and they did not carry this wine. January 6th, 2020, after another echo, we were told by the cardiologist that she could now see both pulmonary arteries, they were almost normal size and she was now able to now visualize one of four the pulmonary veins. She told us the baby will live but will need heart surgery after birth. We were ecstatic! Thank you Jesus! The following echos showed increased growth of arteries to a normal size. After the last echo, the doctor said there was a possibility there may be two pulmonary veins going where they should - a condition called partial anomalous venous return. We met with a pediatric cardiac surgeon who told us there is a possibility if the baby has partial anomalous pulmonary venous return, sometimes you can wait until 4-5 years of age for surgery. We asked the cardiologist if she had ever seen anything like this where the baby was then born with all normal pulmonary veins. She said no never in her career. I said well we are going to be your first...and Ava was. Ava Grace was born on 3/16/2020, 7.7 lbs, 19 ¾ inches and all pulmonary veins in place correctly as they should be. Ava had difficulty with her oxygen saturation at birth and was quickly intubated and put on a ventilator. Her oxygen saturation was not rising after intubation and the doctors needed to increase her ventilator pressure so high that it resulted in bilateral pneumothoraces. The team transported Ava quickly from Sharp to cardiac ICU at Rady's Children's hospital because at the time, they thought she had the partial anomalous venous connection problem. Chest tubes were placed as soon as they learned of the pneumothorax at Rady's. Echocardiogram showed all 4 normal pulmonary veins and 2 pulmonary arteries appearing a little small but not too bad! One of Ava's many miracles! Doctors tried iNO gas but Ava's 02 saturation would not rise to normal. Ava was then put on ECMO (heart/lung) bypass machine as a last resort life saving measure. This helped Ava’s oxygen levels to increase. Ava was on ECMO for ~3.5 weeks. We were told normal cases were 2 weeks at the longest and chances of survival are low after the 2 weeks. At about 2 weeks, Ava underwent a CT scan of her brain and lungs and catheter lab to test her pulmonary pressures with a trial of medications while on ECMO. We were told her lungs were small, especially the left, but they have seen smaller cases survive. No one knows the cause of why her lungs were small besides the reason of small pulmonary arteries. She responded positively to a trial of meds in the cath lab so they started her on these pulmonary hypertension meds. She failed multiple trials to come off the ECMO machine and the doctors were starting to lose hope. These were some of the hardest days. "...My grace is sufficient for you, for my power is made perfect in weakness..." 2 Corinthians 12:9. The doctors pushed us to do a very detailed genetic blood test to find out if Ava had any fatal lung diseases. They believed Ava likely had a fatal lung disease and that was why she was failing her trials to come off the ECMO machine. We felt deep in our hearts she did not have these diseases but did the test so they would move on to the next thing. Test came back negative for any fatal diseases! Thank you Jesus! Another miracle. Then it happened. After multiple failed trials, Ava started to show progress in her ability to get off ECMO. That day we decided to play our Ava Grace worship playlist we made over her this time (the first time we played music during a trial off). The room fell silent except the music, and this time, without the chaotic beeps of the machines (because Ava was doing so well). We closed our eyes praying and singing and when we opened them, all the doctors had left the room and Ava's nurse was singing as well. The doctors left the room because Ava was doing so well! "So do not fear, for I am with you; do not be dismayed for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10. Ava passed the trial and the next ones to follow. Thank you Jesus! She had the ECMO cannulas removed from the carotid artery and jugular vein in her neck and she was no longer on ECMO after about 3.5 weeks. Another miracle! The chance of her coming off ECMO alive according to the doctors was small but we believed she would and she did by the grace of God! "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." Romans 8:18. There is more to the story! Click on the Journal tab above and scroll to the first journal entry from January 17, 2021.