in my sister's words...

The last 3 months we have been through the best and worst moments of our lives. We were so excited to welcome our beautiful baby girl into the world at 12:30 am on April 5^th...we knew she was going to change our lives completely but we had no idea the extent of what we were about to go through. The roller coaster of emotions the past 3 months has been extreme-I don’t think there is a single emotion we haven’t felt and many days were a combination of emotions at each end of the spectrum. After the initial open-heart surgery to repair the TAPVR that she was born with we thought we were in the clear and we could finally fully enjoy the somewhat normalcy of parenthood. We were doing our best to treat Stella like we would if none of this had happened (minus the heart monitor that we had to carry around, the extra doctor appointments, and the dreaded feeding tube and “Kangaroo Joey” pump.)

We got to see her amazing personality forming and fell even more in love with the happy little girl that loved to be held and make funny noises with us. We had gone to follow up visits and had two echocardiograms since we left St. Joes and everything was looking great. We were so excited to spend some time as a family in our favorite vacation spot, Coronado Island, but we had to come back for a few days for another routine follow up visit. During the echo the technician, who we’ve gotten to know since the time we were at Mercy Gilbert, barely said a word and I knew something must be wrong. When the cardiologist came to discuss the results he simply said “The echo did not look good, the pulmonary veins are narrowing and you need to take her directly to Phoenix Childrens-we have a room ready for you.” My heart sank and I knew we were about to go through the hospital process all over again. I had Stella there by myself and I guess you can say I was a little hysterical on the drive to PCH, especially since I was not able to get a hold of David.

We continued to hope for the best case scenario thinking that we would only be in the hospital for a few days they would find that there is only narrowing in one spot and they would be able to do angioplasty to fix everything. However, each day we were given worse news as we went through discovering that all of her left pulmonary veins had stenosis forming, the right side of her heart was shutting down, her lungs were not able to function properly because of the pressure building up. We were actually told that the right side of her heart “looked like a mess” – that can’t be a good thing! We brought Stella in as a smiley 2 ½ month girl and watched as she struggled more and more each day to do the simple task of breathing and giving her body the oxygen that is necessary.

On June 27^th we received a call at 3:30 am to come to the hospital immediately because they were having to intubate Stella (to put her on a breathing machine). The doctors decided that surgery needed to happen ASAP and she was scheduled for 7:30 am the following morning. They took some routine blood cultures for testing prior to surgery and it looked like everything was good; however, the blood cultures showed that she had a blood infection from her central line and the surgery got postponed. That Tuesday was the day that we hit rock bottom. Stella was on the ventilator and they started her on antibiotics trying to keep her stable and fight the infection before operating. We watched as she went into heart failure and at the worst moment of our lives David and I were taken into a room with four doctors to talk about our options. The option that they gave us was to put her on ecmo (a form of heart and lung bypass that involves two very large tubes in her neck, one going into her superior vena cava and one coming out of her carotid artery-the tubes took all of her blood out of her body into the ecmo machine which oxygenated the blood and pumped it thru her body) and get her stable so they can do the surgery. But the surgeon said that the infection and heart failure really complicated things with the surgery and that he could not guarantee that if he operated this time and stenosis continued to form in the future that he would be able to operate again. He made it clear that stenosis could form weeks after the surgery, months after, or years after and if it did reform there probably would not be much that they could do. The other “option” which in all honestly was not even an option at all, was to make her comfortable the way she was and let her survive as long as she could without providing support-which in her condition would not have been long. We obviously chose to give her the best chance we could and pray for miracles. I can’t even begin to explain how it feels when someone is telling you that your child might not survive but I do not wish that feeling on anybody!

The next day the surgeon decided that being on ecmo helped make her stable enough for surgery and they were going to operate right away. After her surgery the cardiologist let us know that the OR team did a “miraculous job” but we knew that we definitely experienced a miracle but it was not just a result of the OR team. She came back from surgery NOT on ecmo or bypass (we were told to expect her to be on ecmo for about a week!) Post surgery started the slow recovery process-Stella’s kidneys had shut down when she was in heart failure because her body was doing everything it could to stay alive by getting blood to the most important places (her heart, her brain, and her lungs). Each day we see small improvements and we have been reminded daily by various doctors that Stella is one of the most critical cases they have worked on and they are surprised at how far she has come-she has definitely beat the odds! David and I praise God for each day that we have been given with Stella and we hope to continue to praise God for this for many more days. The hardest thing for us right now is that we have not held our baby for over 2 weeks and we still have some obstacles to overcome before we are able to do so- but what a great day it will be when our precious miracle is back in our arms!

Recently I was introduced to the song “What it Means to be Loved” by Mark Shultz and it is exactly what we are feeling right now. I know that God has an amazing plan for Stella and I pray that His plan for her is similar to mine. But at this moment “I wanna give her the world, I wanna hold her hand, I wanna be her mom for as long as I can and I wanna live every moment until that day comes, I wanna show her what it means to be loved!”