****Trigger warnings: c-section, breech birth, emergency transfer, CHD, NICU pictures****
Around the half-way mark of my pregnancy with Ava, my MFM OB noticed that the bloodflow through the umbilical cord to Ava was slightly restricted. So I had ultrasounds every couple of weeks to check her growth and make sure everything was ok. When I went for the ultrasound at 35 weeks, the tech discovered that Ava was breech. Dr. T assured me that Ava still had plenty of room in there to flip and to come back in two weeks so they could check her position again. As soon as I left his office, I went to my chiropractor for my first Webster adjustment. My chiro told me he had had success flipping other babies and felt confident that if he could get the inflammation down in my right hip, it would make the pelvis more comfortable for Ava and she would flip. I went every couple of days for adjustments until the end. I did inversions, I put cold things on her head, I went to the pool and tried to do a handstand in the water, pretty much everything except moxibustion or trying an external version.
I was not comfortable with the risks of a medical induction if Dr. W was able to get her to flip so at my 38 week appointment, we scheduled the c-section for the day before 40 weeks. My calculated due date was different than what the doctor's office had because I had been charting so I knew that I had ovulated on CD 13 rather than the typical CD 15 so while they had my EDD listed as 7/21/11, I had it as 7/18/11. We scheduled the c-section for 7/20/11. I had gone back and forth with Dr. W to just let me go in to labor and then do the section but because Ava was single footling breech, he was concerned about cord prolapse. So we scheduled it. And I thought I was ok with that but I started crying in the nurse's office while we were scheduling the day. It was just so far from what I had always wanted our birth experience to be. I worked really hard though at getting to a place of peace with the c-section. I felt like I could say with all honesty that I had tried everything I was comfortable doing to get Ava to turn and she wasn't. So I came to the conclusion that Ava must be breech because she needed to be breech. I didn't know why and I wasn't sure I would ever know why she flipped breech but that's what she needed. I had always said that babies are self-preservationists and will do whatever they can to be born alive. My last day at work was Friday, 7/15/11. The plan was that I would take Monday the 18th and Tuesday the 19th as vacation days to rest and then we would head to the hospital bright and early Wednesday morning for the surgery.
Friday night: I got home from work, exhausted and sore, but there was so much still to get done. I wanted to work hard all weekend and then rest for a couple of days in peace. I had overwhelming urges to do certain things. Friday night, I was on a mission to find the power cord for our video camera. It took me a couple of hours but I finally located it. I settled down to attempt to sleep around 11 PM. Sleep and I were not friends in the third trimester. I would wake up in the middle of the night and be awake FOR HOURS and finally doze off right when it was time to get up and go to work. I was running on fumes. This night proved no different.
Saturday: I slept until about 3 AM Saturday morning and then woke up unable to go back to sleep. So I decided to be useful. The big kids were not home so I cleaned both the boys' room and the girls' room as well as their bathroom. I laid back down with DH around 6 AM and dozed for about an hour. I then couldn't rest any longer so I got up and vacuumed the whole house. The next thing that I ABSOLUTELY had to do was install the carseat in DH's car. So I went outside and worked on that, sweating in the July late morning heat. I finally got that all set and came back in the house to work on more things. In the afternoon, my sister, who was visiting from out of town, came over with her two little girls to visit and see Ava's space. While they were here, I noticed that my back was hurting but I had been doing a lot of stuff that day so chalked it up to that.
They left around 5 PM and I laid down to see if my back would feel better. I was home alone because DH had gone over to my MIL's to see her and one of his sisters who was also visiting from out of town. I couldn't settle down, my back wasn't getting better and now I felt the overwhelming urge to go to the grocery store. I had a voice in my head saying if I don't go now, I would not have the chance again. I wanted to make sure the kitchen was stocked before I went to the hospital because when my DH is left to his own devices in the grocery store, he comes home with things like a loaf of bread, chocolate syrup, frozen pizza, cereal, beer and eggs. So I headed to the grocery store. Once I got there, I noticed that on just about every aisle, I was having to stop because it felt like someone was giving me a really tight hug. I started looking at my clock every time it would happen and they were coming about every 7-10 minutes. Hmmm, contractions? Wasn't expecting that! I had been texting with my sister about going to a wine bar after she got her girls in bed but now that I was feeling contractions, I wanted to back out. But I didn't want to let her know I was maybe having contractions. I finished shopping and as I was checking out, I called her and she must have heard something in my voice because she asked if I was having contractions and I said maybe but I wasn't sure. I told her I would count them on the way home which was 20 minutes away and text her if I had any on the way home. I had 2 and then 1 while I was unloading the groceries but I texted her and said they stopped. I didn't want her and my mom hovering, which they are excellent at.
So now I was home by myself and definitely having contractions. I wanted DH home with me. I tried his phone but he didn't answer. Of course. I kept trying and nothing. So then I broke down and called my MIL's house. My SIL answered and the first thing she says was "are you in labor?!?" I said, I don't know but I need DH home. So this thing that I wanted to keep under wraps until it happened was now leaking out. When I envisioned Ava's birth, I had wanted it to be something that DH and I experienced together. I had wanted there to be a few hours after Ava's birth where we could get to know her before sharing her with family. Now my sister knew something was up as well as one of his sisters. DH told her not to say anything to anyone else in the family until we gave her the go ahead. He got home around 9:30 PM and proceeded to stress himself out for the next two hours because he wanted to call the OB right away and I said no. I wasn't convinced I was feeling contractions because they didn't hurt. They were noticable but not painful. I laid on the bed, timing them with my Contraction Master app and sort of watching a crappy movie on TV. Finally around 11:30 PM, I let him call. They were getting closer together and more intense so I figured it wasn't false labor at this point. In all his stressing, he had managed to dump my almost completely packed suitcase out so that I had to repack it. We left for the hospital around Midnight.
Sunday: We got to the hospital and apparently the full moon the day before had had it's effect. I was the 5th preggo lady to arrive that night! They put me in the birthing room closest to the dedicated OB OR and confirmed that I was in fact in labor and dilated to 1 CM. The nurse called Dr. W to let him know and he said to get some rest and he would be in at 7 AM to do the surgery. Rest? Hahaha, yeah. I texted both my sister and my mom, who by the way had both promised to keep their phones close by so they could answer, but neither of them responded. So we attempted to settle in. DH was exhausted and dozed on his little bed. I sat in the bed and tried to think of things to do. I was too excited to sleep. I was also uncomfortable with the HR monitor and EF monitor strapped to me. Ava was moving like crazy from the contractions and I held out a slight hope that she would get herself flipped vertex. I dozed a bit from 4-5 AM but that was it. So four-ish hours of sleep the night before and now one-ish hours of sleep. Excellent.
They started doing surgery prep around 6 AM and I finally got in touch with my mom and sister. They were beyond excited but I convinced them to wait a while before coming to the hospital. Dr. W did one last ultrasound to confirm her breech position and we headed off to the OR. I wanted to watch as much as possible so I had requested a mirror but I could see more in the light above the bed. Surgery started at 7:27 AM. I watched almost all of it except for the initial incision. Ava came out at 7:57 AM, frank breech and pooped on Dr. W! She was screaming and when he held her up for me to see, I was so shocked by her red hair that I started laughing and thought how much she looked like my cousin. Dr. W delayed clamping the cord for about a minute per my request and then the pediatrician started checking her out. The table she was on was just steps away from my bed so I was able to keep an eye on her the whole time. DH went over and cut her cord while a nurse took pictures of him doing that. Having the pediatrician in the OR was not a standard thing. He just so happened to be at the hospital that morning and decided to come in for the surgery. They don't normally attend non-emergent c-sections. Ava's Apgars were 8 and 9 and she was screaming away. They wrapped her up and brought her over so DH could hold her on my chest. She was incredible.
After a few minutes, the nurse asked if DH could take her to the nursery since it was so cold in there. They would measure her and keep her warm until I was in the recovery room and then they would bring her to me. I agreed and they left. While they were closing me up, one of the nurses observed that there appeared to be no physical reason why Ava hadn't been able to flip back to vertex. I watched them do my staples in the light and then they took me next door to the recovery room. I kept my eyes glued on the door waiting for DH to come back with Ava. I needed her back in my arms. Unbeknownst to me, things were going downhill fast for Ava in the nursery. When she arrived in the nursery, she was still pink and looked great. A nurse hooked her up to a pulse/ox for no apparent reason. Her oxygen saturation was only 54%.
They put her under an oxygen hood but after putting it at 100% oxygen, her saturation level was still only 70%. I still don't know how DH had the courage to come tell me something was wrong with Ava. I sat in my bed in the recovery room and kept my eyes glued on the door, waiting for him to show up with Ava. The nurse tried to make small talk and I basically ignored her. Finally the door opened but only DH was there. I asked him where Ava was and he said she was having some trouble breathing and they were working on that. He said there was a slight chance she would have to get transferred to the NICU across town but they were trying to avoid that. I started crying but said ok. I sat and waited long minutes silently begging in my head for that door to open again. Back in the nursery, the pediatrician had started to suspect a heart condition and he knew that he was maxed out at what he could do to help her. He made the decision to transfer her care. DH came back and had to tell me that they couldn't get her oxygen level up high enough and they were going to have to take her to the teaching hospital to the NICU. They were bringing a transport team to take her but he said they had promised they would bring her in my room so I could say goodbye. I was lost. I could hardly process the words coming out of his mouth. She had been healthy when she left me. And now she couldn't breathe? What was going on? They finally cleared me to leave recovery but since there had been so many births over the past few days, I had to go back to the birthing room first rather than going straight to a PP room. It was probably for the best. When the Newborn Emergency Transport Service came in to my room with this huge rolling isolette, I knew there was no way that thing would have fit in a PP room.
They tried to get my bed lined up with Ava's bed so I could touch her. I couldn't touch her face because she was under an oxygen tent.
The only thing I could reach was her foot. I was crying to the point that I could hardly breathe. My sister and SIL were both in the room at this point and I remember my SIL telling me to talk to Ava but I couldn't get any words out. She was screaming and there was nothing I could do to help her. When I look back at those pictures now, it almost breaks my heart. I can tell by her face how scared she was. After a couple of minutes, the NETS team said they needed to get her across town and like that, my baby was gone.
A few weeks before Ava was born, I had been obsessed with making sure DH knew what to do in case "something bad happened". I had no reason to think anything bad would happen but I was a lady on a mission! I was obsessed. I typed up a list of emergency numbers in the order that they should be called. First was my OB, second was the emergency number for the priests at our church and third was Ava's godmother. I even looked up the local contact for Now I Lay Me Down To Sleep and explained what that organization was to DH. I told him over and over that if something happened, he needed to stay with Ava. Looking back, I think that was Ava's way of helping smooth the way. In the chaos of that morning, I didn't need to give DH instructions because he had them printed in his wallet.
He left to follow the NETS team and called our priest on the way there. By the time they got Ava stable so DH could go back and see her in the NICU, our priest was there and he baptized Ava. One of my other SILs met Rick at the teaching hospital so she was able to take pictures. She was also there when the cardiologists gave the diagnosis so my first exposure to my new reality was listening to the speakerphone conversation between two of my SILs. I heard the words Tetralogy of Fallot and saw my SIL write something down on a piece of paper and all I could think was "she spelled fallot wrong". I had seen that term before. One of the MDC mamas used to have it in her signature because her child was a "heart baby" and he has ToF.
Right after they got off the phone, my hospital room phone rang. It was one of the NICU doctors. She started talking to me about Ava and I was doing my best to follow what she was saying so I was doing lots of "uh-huhs" and "mmm-hmmms". And then I realized she just told me that Ava had a rapid HIV test done per hospital protocol and it came back positive. This doctor was telling me that Ava was HIV positive. And I tried to argue with her and explain that I was HIV negative so it must be a mistake. And she kept asking me "Is there anything you need to tell me?". She said they needed to start AZT right way to minimize Ava's chances of it turning in to AIDS. I said that I needed to call DH and we would call her back. She then said that she was really just calling me as a courtesy because they were required to start AZT within 8 hours of a birth. She did need my permission however to ask my OB to order a rapid HIV test on me. I asked my SIL to leave the room and I called DH. I said Ava's HIV positive, is there anything you need to tell me? And he said no. And then he started questioning when I visited my sister in Thailand in 2005 and had my teeth cleaned there. We had just had our world shattered with the diagnosis of our baby having a congenital heart defect and now we were arguing over who was more likely to have been exposed to HIV. So while I was waiting for him to get back to my hospital room, my OB called. He wanted to know why someone had called him asking to check my HIV status. I explained about Ava's rapid test coming back positive and he got so mad. He said that those tests are notorious for producing false positives in newborns. So his plan was to order a rapid HIV test on me and if it was negative, then we could assume Ava's was a false positive and they could stop the AZT. So they did a rapid test on me. We got the result back about an hour later and it was negative. My OB said he would call the NICU docs and let them know so they could stop with the HIV stuff.
Meanwhile, I sent DH back over to the NICU with my shirt that I had worn all day long the day before so that Ava could smell me. When he came back, he said she was super feisty and hard to settle but once the nurses wrapped her up in my shirt, she audibly sighed and snuggled down to sleep. While I was happy to hear that she was calmed down, it broke my heart to know she was missing me as much as I was missing her. I tried to sleep that night but it was not happening.
Monday: I was going crazy sitting in my hospital bed during the early hours of the morning but I still had my catheter in and I had the pressure cuffs on my legs to minimize the risk of blood clots. I was feeling so restricted and DH was sleeping in the bed next to me and I felt like I was going crazy. I buzzed my nurse to come to the room and asked her to get me in the rocking chair. I was able to get the pressure cuffs off by being up and "mobile" so I had some relief. I sat in the rocking chair for a few hours. I tried to only call Ava's NICU nurse every couple of hours because I didn't want to keep pulling her away from Ava. But when the grief would get too much to bear, I had to do something to remind myself that my baby was still alive so I would call. Everyone kept telling me that I needed to rest because I had just had a baby and I kept thinking what a silly statement that was. I certainly didn't feel like I had just had a baby. I had had surgery, yes. But a baby? No. There was no baby in my hospital room. I could hear babies crying in other rooms and I felt like I didn't belong on the postpartum floor. I should have been on a surgical recovery floor or something. DH was driving me crazy sleeping. I needed to pump every couple of hours but I needed his help to get stuff so I had to keep waking him. And then he would ask me why I didn't ask the nurse to come help me get the stuff. I decided then and there that he needed to go home for the next night because I wasn't putting up with this crap again. I was starving around 5 AM so I buzzed the nurse to ask her when breakfast was coming. She said not until around 8 AM but she could bring me a bagel and cream cheese if I wanted it. It was so good! I must have eaten something the afternoon before but I don't recall. I dozed a bit in the rocking chair I think but then my legs started getting cold so I asked the nurse to come back and help me get in the bed. She was able to take the catheter out then so I could start trying to move around the room. I wanted DH to get up and go to Ava ASAP but he said he needed the sleep. I wanted someone with her but I couldn't force him to go. In the mid-morning, he helped me get a shower and settled back in to bed and then he went to be with Ava. I had family and friends stopping in to visit me but I felt silly having them come see me when there was no baby to show off. The nurses felt bad for me and looked the other way so my little nieces could come in my room to see me. Children under the age of 12 that aren't siblings aren't supposed to be on the LDRP floor at my hospital. DH kept going back and forth between the two hospitals that day and then I sent him home to sleep. I finally got myself settled for the night and fell asleep around 10:30 PM. It was the first real sleep I had since waking up Saturday morning but it would be shortlived.
Tuesday: I woke up around 12:30 AM to my phone ringing. It was DH. He had just gotten off the phone with a NICU doctor. It seemed that they had missed Ava's 9 PM dose of AZT and were just letting us know that they would be giving it to her now. Ummmm, what?!? How were we back here? My rapid test had been negative! Also, how does a NICU miss giving a sick baby their meds? I called the NICU doctor FIRED UP. It turned out that until the Western Blot HIV test came back for both strains, they had to keep administering AZT. Remember, as parents, we had no say in whether or not they gave this medicine to Ava. Her Western Blot for HIV 1 had come back negative but they were still waiting for the Western Blot for HIV 2. And as to how meds got missed, well, it happens. Ummm, no. Not acceptable. I called DH back after researching HIV 2, which is primarily in west African countries and there's only been something like 78 cases EVER in the US and told him that until he could get to the NICU the next day to be with Ava, I was sending my mom over there with strict instructions to not leave her bedside. She would not be able to authorize treatment but she could at least be eyes and ears for Ava. I was also going to BEG my OB to release me when he came around in the morning. And someone needed to talk some sense in to the Infectious Disease team at UVA. So I called the NICU doctor back (it's now around 2 AM) and basically read her the riot act. She promised to address my very valid point to the ID team as soon as possible in the morning and to delay any further AZT doses until talking to them.
Satisfied with the plan, I got off the phone and attempted to get out of the bed to pee. I then experienced the most excruciating pain I've ever felt in my life. I couldn't sit up. I could hardly breathe enough to reach my call button. I got the nurse in the room and explained through tears and jagged breath that I needed to get up to pee and to please help me. I was almost hysterical not only from the pain but the idea that I may not be able to leave the hospital later that morning because of the pain. She finally got me across the room and in to the bathroom. Once I had voided my bladder, I was able to walk again. She theorized that I had let my bladder get too full and it was pressing on my incision. She pondered out loud if Dr. W would be willing to discharge me given my level of pain. I said it wasn't an option. I had to get to Ava. She sat with me for quite some time while I talked and cried. I told her I felt like Ava was dead. I told her I was curious about the baby across town in the NICU but I wasn't connecting my Ava to that Ava. She gently suggested that I should speak to the social worker. I agreed and she said she would put the order in. I may have gotten some more rest but I don't recall sleeping again that night.
Dr. W came by during rounds about 7 AM and said we could try to discharge early that afternoon. He just didn't feel comfortable letting me go yet given my pain from a few hours before. I was upset but understood. While I was eating my breakfast, my MFM OB came by to see me. He was so upset that he had missed Ava's heart condition during all my ultrasounds. He said he had pulled all the film from my ultrasounds the day before and reviewed each one. He still didn't see the defect. He then called one of Ava's cardiologists, who is also a friend of his, and she assured him that even when doing the echo of Ava's heart in the NICU, without viewing it at just the right angle, it was easy to miss. She wasn't surprised he didn't catch it prenatally. After he left, I tried to pump some more and rest. My colostrum was pretty much non-existent at that point and I was very concerned about my supply. The hospital LC came to visit me but she wasn't much help. I really needed larger flanges but didn't realize it at that point. The social worker came and talked to me for a while and gave me the name of the social worker at Ava's hospital. I heard back from the NICU that the ID team agreed that since my rapid HIV test was negative and Ava's Western Blot HIV 1 test was negative, we could be pretty sure that her first rapid HIV positive test was a false positive and they agreed to stop the AZT.
After my lunch, the nurses came to remove the staples. What should have been a relatively painless process was made hellish by one of the staples getting stuck. It ended with me biting a pillow, screaming, while they tried to dig the staple out. When that didn't work, they paged my OB to come from across the street to remove it.
Once I recovered from that, my mom had arrived to take me over to Ava. I had always tried to picture the idyllic scene of leaving the hospital with my baby in my arms and DH lovingly setting us in the car. Nope. It ended with me standing outside the hospital with my "It's a Girl!" balloon waiting for my mom to pull her truck up. People were avoiding looking at me, I'm sure they thought my baby had died and it certainly felt that way to me.
I finally got across town to Ava's hospital. I convinced my mom to just drop me off at the patient care entrance so I could get one of the transporters to wheel me up rather than waiting for her to figure out how to park a Ford Expedition in a parking garage. I would pass by that entrance a few weeks later when I had to go get Ava's meds filled prior to her discharge and I couldn't control the sobs as I passed by. I still get upset sometimes when I see that specific entrance. At any rate, I finally got upstairs to the NICU. To access the NICU, you have to call in to a receptionist and announce who you are so they can decide if they can buzz you in. I could hardly choke out the words "I'm Ava's mom" but somehow I made her understand who I was and she let me in. I finally got to my girl. Once I could touch and smell her, the exhaustion I had been holding at bay settled over me and I was suddenly so tired I could have slept for years. But there were doctors to meet and pumping to do. There was surgery to discuss and a care plan to develop. There were meetings to discuss how healthy hearts operate and how Ava's heart operated. Sleep would have to wait.
7 lbs 5 oz
Surgery to place Blalock-Taussig Shunt: 7/25/11
ToF repair surgery: 1/20/12
Mama and Ava March 2012