Avery's 48 day journey

I write this more as a journal entry for myself. I have already forgotten details, but in this entry, I will include details I remember…both good and bad. I hesitate to share our experience on the blog, because of its intimacy and sacredness to our family. But we know that so many of our friends and family have invested so much of their love and tears in behalf of our family, so I feel it appropriate to share it with all. This is extremely long, so don’t feel bad for skimming it. But I needed the details for myself and am not willing to write an abridged version. This in fact is the abridged version.

March 24th:
As I think back on that day, I feel nauseous. That was probably in the top 3 of my worst days of our experience. We were all having a normal day. My mom came to spend the day with me because it was Mike’s first day back to work and he was up in Reno. Avery was sleeping, pooping and eating just as she should have been…until about 4:00pm. She started crying and it was very intermittent and she was breathing a little strange, but nothing that made me really worried (and it doesn’t take much to worry me). I tried to feed her, and almost instantly, I saw a change. I could tell she wanted to eat and she was trying, but she kept crying through it. Then she started to grunt a little bit between her breaths. At this point I was concerned enough to call the doctor. Our pediatrician, Dr. O'Malley, got on the phone and listened to her crying and her breathing. He told me I should take her to the ER because at this age, there could be a problem with the heart. Panic began to set in.

I instantly sent my girls over my good friend’s house and my mom and I drove as fast as we could during rush hour to UC Davis Medical Center. Within minutes, I could tell something was severely wrong…it happened so fast. When I think back on it, all I think of is, ‘it happened so fast…it happened so fast.’ She was quickly becoming lethargic even on the car ride over to the hospital. We arrived at the hospital around 5:00 pm and were admitted instantly. They brought her into a room and immediately started taking vitals and trying to figure out what was wrong. I somewhat knew the severity of it when they kept poking her, even drilling into her bone to try to get a line in and she wasn’t responding. Only minutes after she was admitted, she crashed…and she was dying.

Without going into scientific detail, of which I still know very little about, there is a duct in the heart that the baby uses while in utero to help circulate blood through the heart. Typically, this duct closes between 1 and 7 days old. Avery’s closed on March 24th around 4pm. Consequently, the rest of her vital organs, namely her lungs, GI tract, kidneys, and every organ in her body were not getting the oxygen or the blood that they needed. Apparently, when the body knows something is wrong it first sends the blood to the heart and brain in order to preserve the most vital organs. After seeing how the human body works, there is absolutely no doubt that our bodies are divinely created. No man made machine can compare.

Time stood still. My sweet mom was with me and it helped to have her, but I needed my husband. I needed him to be there if we lost her. I have never felt so helpless in my life, as I’m sure my mom felt the same for me, but this was my battle…she was my baby. Swarms of doctors were working on her and there was intensity and concern on all of their faces. All I could think about was, ‘how am I going to tell my little girls that they don’t get to hold their baby sister again.’ The doctors turned to me and tried to explain what they were doing and what they were learning about her condition. They gave her medication which actually opened the duct back up, allowing oxygenated blood to get to the rest of her body. The concern now was, whether or not her organs could ever recover from the trauma of the last two hours. After they got her somewhat stable, they brought her up to the Pediatric Intensive Care Unit (PICU). Mike finally arrived around 7:30 as we were waiting to be allowed to go in and see her. After hours of waiting, her cardiologist came in and explained that she was really not doing well and that she was very sick. He also informed us of the multiple heart defects that Avery had. I was devastated. I cried so much that I had a headache, my teeth ached, and I felt like I had gotten water up my nose (cry enough and you’ll know what I mean). I thought I was going to throw up.

After hours of waiting, they explained to us what she would look like so that we were not shocked when we saw all the tubes in her body. As we walked into her room, all I saw was my sweet baby. I couldn’t have cared about all the tubes. I just loved seeing my little baby girl. At that point, time was what we needed. We needed to see if her organs could recover to even allow for open heart surgery. We stayed in the hospital 24 hrs. a day. The next day (maybe two day after, I can’t remember), we were told that that her functions were returning and she was recovering remarkably well. It was about that time that we were informed that she had 4 heart defects. She had a VSD (ventricular septal defect, otherwise known as a hole in her heart), hypoplastic aortic arch, subaortic valve stenosis, and an aortic valve stenosis. In a nutshell, she had a hole in her heart between two of her chambers, her aortic valve was half the size it should have been, her aorta was too narrow and the aorta also came to a bottleneck in a specific area. All of this together made is so her little heart couldn’t pump the necessary amounts of blood to her organs.

I cried and cried. I couldn’t even pick up the phone to talk to my sister or brothers. Every time I looked at a nurse, doctor, or especially Avery, I fell apart. I spent the majority of the first week crying.

After a few days, they were able to take Avery’s breathing tube out, and the only medication they had her on was the PGE which kept her duct open which was keeping her alive, as well as a nutrition feed. Even though she was still hooked up to IVs and to monitors, we got to hold our precious angel. One of the hardest parts of that week was that Avery couldn’t be fed through her stomach. Because of the damage done to her stomach, feeding her straight through her mouth to her stomach could cause serious complications, so they fed her though an IV line. However, her stomach was still empty so she felt hunger pains for those 5 days before her surgery. I can’t express the depth of heartbreak in knowing that Avery was looking at me not knowing why her mom couldn’t feed her. Words can’t describe the pain of not being able to help your baby. The consolation, however, came in the knowledge that her loving Heavenly Father knew of her situation and we feel that he eased her pains and sent ministering angels to encircle her. We truly feel she was blessed. There was a palpable spirit inside that little hospital room of hers.

Monday: March 30. Day of surgery

Once again…time stood still. As we walked her bed down to the operating room at around 12:30pm I couldn’t control my sobbing. While the doctors told us there was an 85-90% success rate, the only number that I heard was the 10-15% chance that she wouldn’t make it through. I just kept thinking, ‘how on earth can a ten day old heart survive the trauma of such a complicated open heart surgery?’ She was crying when we brought her down stairs to the operating room…that was the last time we heard her cry. Oh, what I would give to hear her cry again.

We waited in her room for what seemed like an eternity. One of the cardiac nurses would come up and update us occasionally. Thing seemed to be going pretty well. About 9 hours later we got the word that the surgery went well and they were going to bring her up. However, they tried to get her off the heart/lung bypass machine (ECMO machine), but her heart wasn’t quite ready to do all the work itself so they were going to keep her hooked up to it for a few days. Many infants come up with the machine and stay on it for a few days while their heart rests and recovers. We didn’t get to see her right after the surgery because they needed to get her situated and make sure she stayed stable. Unfortunately, she was bleeding from a site within her chest and the surgeon had to go back in (which they never want to do) and try to fix it. Around 1:00am, he found the bleeding and stopped it. We were able to go in. They took a Polaroid picture of what she looked like so that we would not be shocked.

Nothing, not even a picture could have prepared me to see Avery the way she was. Her blood was being oxygenated through the ECMO machine and we saw all the blood circulating in and out of her body through two big tubes that connected from her open chest to the machine. Avery’s chest was also open with a sterile patch over it. We couldn’t see her actual heart, but we could see it beating against the patch. The tubes were in her heart circulating the blood. Any movement of those tubes could instantly end her life. When I saw her, I’m sure I turned white because I felt very nauseous. We obviously stayed all night hoping that her heart would keep working.

Her heart seemed to be doing okay for the next few days but when they tried to get her off the ECMO machine, she wouldn’t tolerate it. All of her numbers would drop, and this was an indication that something was not right. Also, the pressures in her two chambers were not correlating, and that too was worrisome. Consequently, they had to take her down to the CATH lab, for another surgery, just less invasive. In the CATH lab, they shoot dye into the blood and from there can see the circulation of the blood. They found that her Pulmonary artery, which was replaced during the surgery, had completely clotted off…which they had never seen before. Once again, Avery needed open heart surgery which would be preformed the next day.

Surgery day was again extremely long. Avery’s surgeon found a large blood clot in the pulmonary artery so he replaced it with a bigger one hoping that it wouldn’t clot off again. He also noticed that her lungs had taken a HUGE hit. In that week between the first and second surgery, the Pulmonary Artery wasn’t able to pump any of the blood to the lungs so they were dying. This complication with the clot is what eventually caused our sweet little Avery her life. For the next few days, we monitored her heart very closely to make sure that it didn’t clot again. Easter Sunday came around and her numbers (numbers indicating her vitals and everything else they were monitoring) looked really good. So once again, they tried to get her off the ECMO machine. To everyone’s disappointment, her body wouldn’t tolerate it. This was another one of our 3 worst days in the hospital At this point Mike and I were devastated. She had been on the ECMO machine for two weeks now, and that is an extremely long time. While the ECMO machine was what was keeping her alive, it still caused a ton of problems, including her kidney failure. The surgeon closed up her chest and while doing so, noticed that her lungs were SO bad that the only chance her lungs had to recover would be to allow them to collapse and rest. They took the tubes out of her heart, put them into her neck, and closed her chest.

I stop the story here because my previous entries on the blog cover the rest of her story, and I don’t think I can take much more of writing this. This has taken me a few days to get out because I need to take breaks. I start getting “crying headaches” all over again. I don’t think there was a day in the 6 weeks we were there that I didn’t get sick going up the elevator to the PICU, and that I didn’t get a headache from crying. But I will jump ahead to our last hours with her.

Going into the hospital that morning, I knew that they were going to try to get her off the machine, and if they couldn’t, that these would be our last hours with her. Mike’s parents had come up a few days to meet Avery. So Mike, his dad, and my dad, gave sweet Avery a name and a blessing. We had been informed that if she couldn’t get off the machine, they would make her as comfortable as possible as she passed away. As they clamped off the ECMO machine, and allowed her body to take the reins, Mike and I held her precious little hands. Her numbers stayed surprisingly stable…for about an hour. Every 30 minutes they would take a blood gas which indicated how good her lungs were oxygenating her blood. Little by little her numbers were getting worse and her blood pressure was dropping. The doctor came into our room with tears in her eyes and said, “it’s not good guys.” She said that they could force the numbers to look good, but that this was the point when they would only be doing things to her and not for her. We knew that she was being called home. The doctor asked if we wanted to hold her as she passed away. I never thought I would want to be holding my children when they die, but I couldn’t think of a more sacred experience than holding your child as they return to their Father in Heaven…and sacred it was. We asked them to remove the tape that had covered half of her face for the past 5 weeks (which kept her breathing tube in), so that we could see her perfect little face again. So they wrapped her in blanket, handed her to us, took out her breathing tube, and disconnected all her wires. They gave her medicine to make sure she was comfortable and she breathed in our arms for about 10 minutes. She took her last breath and her daddy held her for at least another 15 minutes.

Words could never express the joy that Avery brought to our life. While she only lived 48 days here on earth, she left a legacy of love and strength that will carry us though our time in mortality. We feel so blessed that our Heavenly Father saw fit to send such a perfect and powerful spirit to our family. We are eternally grateful that in His divine knowledge and love, He knew that we needed her. He knew that she needed to bless our family… and indeed she has in every way. I’m sure people wonder if it was worth the pain of losing her and going through this hard long journey, and I wish that I could shout from the mountain tops ‘YES!’ I would do it again if it meant that she was ours forever. And she is. I also fell in love with my husband all over again. I have never seen a more tender, loving dad. He brought his guitar to the hospital and kept the whole PICU entertained. More than that, he just wanted his little girl to know that we were there for her. When she got head ultrasounds, he made sure that afterwards, that he was the one to wash and do her hair. He even made a bow for her. There were many days that I found myself having to put my faith in his faith. He is the most loving, faithful man I know. We will carry on. We will miss her everyday, but we will live for her. We will live so that we can finish what we started with her here on earth. We will live in profound gratitude for the perfect sacrifice that our Savior made so that our family can be together forever. How grateful we are that the Savior loved us so much, and suffered so exquisitely on our behalf, that a little family as imperfect as ours could be united again with a spirit, particularly Avery’s, who truly did gain “the crown without the conflict.”