After Aili was born she hung out in the delivery room with us for a little while before Chris went down to the nursery with her. The shift change with the nurses happened, which totally sucked because my good nurse left and a lame one came. She was not attentive at all and never explained anything. I just sat there waiting and wondering what was going on. They had taken me off the epidural medicine and it was totally wearing off and I started to feel the trauma that happened down below. When I asked for medication, because I was in pain, the nurse took her good old time.
Eventually Chris left with Aili and the nurse worked to get me ready to move me down to the 2nd floor. Apparently they want you to pee before you go down and right after you go down to the 2nd floor. This was harder than you would think. Standing up and walking to the bathroom was not easy. And peeing was impossible. Standing up and walking from the bathroom back over to the bed I almost passed out. Remember I had lost a lot of blood.
We packed up all our stuff with me in the wheelchair and headed to the 2nd floor. We passed the nursery and saw Chris and Aili, and then headed to the room, where I sat by myself for quite awhile. I was really lonely and no one was telling me what was going on with Aili. This is where what had just happened finally started sinking in. And this is when the crappy part of the whole experience begins.
Eventually Chris and my friend Abby and Aili came into the room. Abby told me that her Glucose levels were low so she had to stay in the level two nursery so they could help her get her levels up. She told me it should be a big deal; usually they go up within 24 hours. I wasn’t too concerned. So I got to hold her for a minute before she went to the nursery. Once she went to the level 2 nursery she couldn’t come out. I would have to go in there to see her.
My parents brought us some food and a smoothie and we chatted a little. Then it was time for everyone to go. Chris went home for the night because there wasn’t much he could do there. I was just going to be hanging out in my room recovering and the nurses were taking care of Aili.
This night was awful. Like I told you they try and get you to pee again. Ya impossible again. Apparently my body was a little traumatized and didn’t want to cooperate. So after multiple times of trying and feeling like my bladder was going to explode and being extremely uncomfortable, they finally put a catheter in me to empty me out. HOLY COW that sucked. I had a catheter with my epidural…but you are numb when they put it in so it’s no big deal at all. This time I was NOT numb and down there was destroyed and painful already. Seriously one of the most uncomfortable painful things ever, but totally worth it. You would be shocked at how much liquid instantly came out of me, and then continued to come out of me.
So that night I got absolutely no sleep and I was really lonely and feeling kind of sad the whole night.
The next day I tried to rest. We visited Aili in the nursery. Tried to breastfeed, but she would just fall dead asleep. It was kind of weird no one could figure it out. The next night Chris stayed, mostly because I was lonely and wanted the company. I had to wake up and go to the nursery all through the night to feed Aili. Which still wasn’t really successful.
Thursday and Friday are all kind of a blur. I was discharged on Thursday. They wanted Aili to be feeding better so that she could keep her glucose levels up. She had had an IV the whole time that she was there which was a nightmare because she is a hard stick. The poor thing was probably poked a million times trying to get a good IV in her. In her arms, hands and head. Thursday night we got up every 3 hours and drove to the hospital to feed her. She still wasn’t doing great. So since she wasn’t breastfeeding super well they put a feeding tube in her to make sure they knew exactly what she was getting to eat. That was hard. I had to walk out while they put it in. And I cried. It was super sad and emotionally draining to not be able to go home with her and to keep having little things happen where she couldn’t come home.
So while I was at home at night and at the hospital during the day I continued to pump and store me milk for her to be fed.
I think it was Friday that they told us that her sodium levels were now low so they had to keep her longer. They were sure why they were low. Maybe because of all the IV fluid that they had given her to get her glucose levels up. I was pretty discouraged when the doctor told us that. That night our parents came to the hospital and they gave Aili a blessing. The main thing a remember Chris saying is to help the doctors to be inspired to know what to do for her….little did we know.

Then Saturday the pediatrician on call called us when we were at home. He told me that they had heard a heart murmur when they listened to her that morning so they were scheduling an ultra sound (echo cardiogram) of her heart to see what it could be. This was the first time anyone had heard anything with her heart. I told Chris and again was discourage that there was again something else that was keeping her in the hospital. We went in a little later. We talked with the nurse about the murmur. She was actually the one that had first heard it. We didn’t talk too much about what it could be. But we kind of got the feeling that it may not be a big deal, lots of people have little heart murmurs. We left later that afternoon and ran to Target to get a few items for me. Chris pushed me around in a wheelchair because I was really sore and not up for walking around the store. Chris took me back home and then left to go get us some smoothies.
About 5-10 mins later Chris calls. I missed his first call and answered the second. I can’t remember exactly what he said, but I remember exactly how I felt. I think he may have only said my name at first and I knew instantly that there was something REALLY REALLY wrong. I immediately started sobbing and saying, “What! What!” He was crying and said that the hospital had called and the doctor wants to talk to us because there is something wrong with Aili’s heart. He said he was almost home and to come out to the car right away. What I felt at that time was nothing I have every felt before. It felt like my heart was being ripped out of my chest. I couldn’t breathe, I couldn’t think, and I just wanted to throw up. I called my mom sobbing. I tried to tell her what was going on, but couldn’t stop sobbing enough to get the words out. She finally just said they would meet us over at the hospital.
I ran out the door down the stairs and into the car. Chris and I just cried and cried all the way to the hospital. We didn’t know exactly what was wrong, but we knew that there was something wrong with our sweet, 4 day old, baby’s heart, and that was more than we could take.
We ran into the hospital and up into the nursery. They had her all unwrapped and doing some tests on her. The doctor met us and started explaining. He told us that she had tetralogy of fallot with pulmonary atresia, and then started explaining what that was. My parents at that time showed up. The doctor was drawing out a heart to explain to us what was wrong with Aili’s. I tried to listen to what he was saying. But I was so devastated, and couldn’t believe what was happening. I just cried and cried into my mom shoulder. I don’t think I even came close to understanding what exactly was wrong with her heart. All I remember him saying is that it is a very serious heart disorder. They told us that the cardiologist was on his way to take another look at her heart and that she would be transferred to another hospital, they just didn’t know where yet.
They gave me Aili told hold. I really thought my life was over. I couldn’t have ever imagined the feeling that was surging through me at this point. I couldn’t stop sobbing. And I kept saying, “I can’t do this, I can’t do this, I can’t do this.” Because I really couldn’t. It was really more than I could bear. Chris’s parents then showed up and they explained to them what was going on.



Then I had to pump so I sat in a corner with the curtains closed crying and crying. Chris was equally as devastated. I have seen him cry a couple times, but nothing like this. It was hard seeing him cry like that. But even though he was feeling the pain I was feeling he still tried to comfort me. After my millionth time of saying, “I can’t do this.” He looked into my eyes and said something to the effect of, “You CAN do this. She was sent to us because she needed us. She needs YOU as her mom. You are the one that she needs.” As much as I knew that that was true, it was a lot to take in. I just could not believe that this was really happening to us.
I was scared enough to have a healthy baby, and it just got a billion times scarier. I had no idea what was going to happen next. It was SO completely overwhelming, I couldn’t even breathe. I always had heard stories of people getting angry when bad things happened to them; I never quite understood it until this moment. I had small little bursts of, “Why? Why me, why is this happening?” I just didn’t understand why I couldn’t have a healthy baby like so many others.
I realized I couldn’t keep thinking that though, because it did happen, and I couldn’t change it now. So I just had to look forward and not wish for something different. I left the nursery by myself to go to the bathroom. I just stood in there and looked at myself in the mirror crying. I have never felt such despair. I knew I couldn’t do this by myself, and that I needed some serious help to get through what was happening. So for the first time ever I was humbled enough to kneel down in the bathroom and pray like I have never prayed before. I definitely didn’t feel immediately peaceful and fine, but I had enough strength to stand back up and face what was happening.
Aili was being transferred to primary children’s hospital, and they were taking her by ambulance. It was the saddest thing seeing her hooked up to everything and strapped into this little case on this big stretcher and taken away.

They nurses got us some drinks and treats to take with us, because I think they knew we were ready to pass out. We hadn’t had dinner, and probably wouldn’t be any time soon. The sweet nurse who had been taking care of Aili and had first heard the murmur was so kind. She hugged me multiple times and told me that I could do it. I wanted to believe her so bad; I just didn’t understand how I could possible do it at this point.
Chris and I got into our car, and our parents got into their cars and we all followed the ambulance up to the hospital. We didn’t say much in the car. We were both so numb. We just sat in silence and then would just start crying again, and again.
We got to the hospital and tried to follow her in but they got her in there before we knew where she was going. In the ER they told us to go up to the NICU. We went up to the NICU but they said she wasn’t there, they weren’t expecting any transfers. They sent us down to the PICU, but we couldn’t get in until we checked in with security downstairs. After checking in which took forever with an old guy who thought he was funny, and I kind of wanted to punch him, we finally got up to where Aili was. She was hooked up to all her monitors. Looking so sad. I hated seeing her there like that.
Again I had to pump which was so frustrating. The nurse was so not helpful. I felt like nobody cared that my life had just been ripped apart in the last couple hours. I went into this little pumping room with my mom and just lost it. I was yelling and sobbing at the same time, I was a wreck. Pretty sure anyone near that room could hear me.
We talked to one of the cardiologist Fellows about Aili’s heart condition. They were going to do another echo cardiogram that night to take another look at her heart. He told us that there is a Surgeon at Stanford that specializes Tetrology of Fallot with Pulmonary Atresia, so that could be an option depending on exactly what Aili’s heart is doing. We asked him how likely it would be for her to have surgery within the week. He said that he didn’t think she would have a surgery within the week.
It was late after we all talked to the Fellow, we said goodbye to our sweet little Aili to head home to try and get some rest. I always felt so bad leaving her at AF hospital and now I felt even worse. It is so hard to leave your baby that you are supposed to have home with you at the hospital. It hurt my heart so bad.

We were all starving at this point. We headed back to our condo and Chris’s dad picked up some food for us. I tried to eat, I was starving, but at the same time didn’t have an appetite. I would be okay for a few minutes and then reality would strike and I just wanted to curl up and cry until I couldn’t cry anymore.
It was really nice to have both of our parents there and their support. I don’t think we could have done it alone. We talked over the whole situation. We talked about how it was a huge blessing that she had to stay in the hospital with all these other random problems so that they could catch this. Just imagine if we went home….then how would be find out? When she started turning blue? We tried to talk about all the blessing and the positives things that had happened. That is sometimes hard for me because I’m quite the pessimist, and tend to look at the negatives.
Chris and I got some blessings from our dad’s after we ate, which was a HUGE comfort. We all felt better after that, not great, but better. Then our parents left so that we could all try and get some sleep.
We quietly got ready for bed, both crying on and off. We climbed into bed and just held each other crying. We could not believe that our sweet baby girl had a heart defect. It is the hardest thing to wrap your head around. I looked at Chris and asked him if he thought we would ever stop crying. I just couldn’t imagine ever stopping. I never knew my heart could hurt so badly. At least Chris and I have each other. I couldn’t imagine doing this without him; he’s and amazing husband and now an amazing dad.