TCH- Diagnosis

Diagnosis: Transposition of the great arteries (TGA), Double outlet right ventricle (DORV), Ventricular septic defect (VSD)

Over the course of the next 9 days, I was driven back and forth to the hospital to see Max and Edgar. Nothing was really happening with Max. They were monitoring him, but overall he seemed like a normal baby. He stayed in the CVICU until they decided it was time for his first procedure. He was going to the catheter lab to get a heart catheter. The plan was to make the hole in his heart larger so the blood could circulate easier. Dr. Ing came in to explain the procedure. He spoke very quickly and he seemed confident that the procedure wasn't going to be a big deal. They were going to go up through his leg to perform the procedure. (Amazing)

We were escorted down to the Cath Lab and we obtained his anesthesia clearance. They took Max away and within an hour he was back resting before he woke up from the anesthesia. Edgar and I were pretty calm through this procedure. The doctors and nurses assured us that this was pretty routine and there weren't many risks. Max recovered well from the procedure and at the end of the 9 days we were allowed to go home. I can remember when we were waiting for our discharge papers being so afraid of going home. Dr. Lindsay, a resident, must have come in more than 2 or 3 times to tell us how to tell if Max's health was deteriorating. He was so patient with our repeated questions. He told us more than once that Max was not going to die suddenly. I needed to hear that.

We were instructed to see our pediatrician once a week and to come to TCH for cardiology check-ups once a week. It seemed like a major chore to me, but anything was better than being stuck in the hospital. Anything was better than being separated from my husband and my son at night.

Once we were home, things momentarily went back to normal. Max was (and is) a wonderful baby. Maybe it was because he was put on such a stringent schedule in the hospital or maybe it's just his nature. I was trying to adjust to having two children. I was adjusting to breastfeeding again. But mostly, I was adjusting to my amazement of Max.

TCH- Day 3

Texas Children's Hospital is an amazing place. While I am constantly reminded that a lot of pain and sorrow is experienced within the walls of the hospital, I choose to focus on all of the positive things that happen. Each day that I came to the hospital I watched as doctors, med students, nurses, PCAs , techs, custodians came to their place of work. I was constantly in awe of the amount of people it takes to keep this hospital running 24 hours a day 365 days a year. I was also incredibly grateful that so many people took up the calling to serve others in the hospital. It's not all the bright colors, the cool food court, and the floors with patient activities that make the hospital. It's all the people that say that TCH is their workplace that make the hospital. It took me over 26 days in the hospital for me to focus on this perspective because the first day I walked into the hospital that was definitely not how I felt. 


It was the Saturday that I was discharged and I arrived with my parents at TCH around 2pm. I would never admit at the time, but I was in a lot of pain. Not just emotionally, but physically. I was completely afraid to tell anyone that I was hurting because I was afraid that Edgar or my parents would make me stay home and away from my baby. I tried going without my pain medication initially for the first day. I couldn't make it. My pain felt like my stomach was literally on fire and being ripped off my body. Eventually I started taking a half dose of my pain medication every 4 hours. As the days wore on, I took the full dose just to make it through. 


Edgar's family had been with him while I was still in the hospital. To say that I was jealous doesn't even begin to describe my feelings. I know they had to support their son, but it absolutely killed me inside that anyone was spending more time with my son than me. When I arrived in the CVICU, I was terrified. Max wasn't in his own room. He had a station on a floor and he had a nurse taking care of him exclusively. Rebecca was Max's nurse and she was amazing. She was warm and welcoming. She explained everything they were monitoring on Max and then she asked me if I wanted to hold him. I got to hold Max for the second time in the 3 long days of his life. 


It's weird because I think in your mind, before you have your second child, you have an idea of how everything will be. When that idea or plan didn't play out in real life, I found myself feeling very lost. I felt like I was being swept away by a river. And there were times when I would have to swim left or right to avoid hitting a rock, but all the while I'm reaching for the shore to grab onto something to get on solid ground. And then there were times when in my mind I felt like I should have completely surrendered to the river and just let it take me over, but something reached out and saved me. It was those moments that I felt the power prayer. It wasn't always my prayer because there were times when I didn't even know where to begin to pray. I could feel the power of other people's prayer reaching out and pulling me back to solid ground, and surrendering to that is the most amazing feeling in the world. 


Holding Max in the CVICU was incredible. It was like I got to meet him for the first time and fall instantly in love all over again. I must have held him for at least 20 minutes when the doctors came by to talk to me. They tried explaining everything to me, but in my postpartum, I found it extremely difficult to focus and comprehend everything that was said. Edgar repeatedly had to translate what the doctors were saying. I call it postpartum ADD, but I would also throw in a huge amount of being lovesick. I truly felt helpless. The first couple of days after having a baby, the role of the mother is to nurse and cuddle her newborn. I didn't have that. I was completely disconnected and very much in my own hormonal lonely place. 


As night time approached, it was time for me to leave and go home. My parents didn't want me staying by myself because I was supposed to be healing from my c-section, so I stayed at there house the entire time Max was in the hospital this first time. It was difficult personally, but I never would have survived without their help. I pumped every three hours around the clock. I was tired. I was sad. I was going home without my husband, without my newborn son, and I felt alone. 

Max Antonio Tavares: 5-5-11

I think a lot of times when it comes to health I take a lot of things for granted. I was never sick growing up except one case of mono in Junior High. Even though I was exhausted, my mom never  let me miss school. I never broke any bones. I never even got seriously injured with all my years playing soccer. Except for the delivery, my pregnancy with Clare was completely normal. Almost too normal because I didn't have any symptoms. This pregnancy was the same. The only issue that came up was that I was hypoglycemic. Not really a big deal, I just needed to eat little snacks throughout the day (and gain tons of weight in the process).

May 5th arrived soon enough and I was so excited. Having your delivery day planned out has its blessings because it's like waiting for Santa Claus when you're little. I couldn't get over the excitement of how our little family of 3 was growing to 4 and the anticipation of what he was going to look like and what he was going to sound like. My c-section was scheduled for 12:00pm and we arrived at the hospital two hours prior. We were put in a room where they started my IV, put me in a cute little hospital gown, and made Edgar suit up for the big delivery. Family stopped by briefly, but we told them we wanted to spend the last moments before the delivery alone as a couple. Edgar and I laughed and joked about all kinds of stuff and I took silly pictures of him in a football stance pretending like he was about to catch a hiked football. Eventually it was time and I walked to the operating room. I made a comment about how scary the OR looked. The anesthesiologist got me all hooked up and within minutes we proceeded. I can remember laying there and hearing my baby boy and just being overwhelmed with happiness. Hearing the child you have been carrying for 9 months make his first sounds must be what it's like to hear angels sing because the emotion is overwhelming. Without even getting a glance at him I was in tears. I could hear Edgar's excitement and I guess he was too excited because I had to remind him that I was still here and I still hadn't seen Max. He brought him over to me and I saw his scrunched up little face and I was in love. The only time I believe in love at first sight is when you have a baby. The nurse called Edgar back for what I thought was to weigh and clean Max off, but later I was told it was because she was concerned with his breathing. Edgar said he was going to go with Max to the nursery while I went to recovery. To me, this is the worst part of having a c-section. You have to go to recovery for and hour and you're isolated from everyone else. I was in and out of sleep and eventually I was wheeled back into my room.

I guess when I got back to the room I figured Max and Edgar would be there. But I was alone. At some point my Mom came in and around 3:00pm I was starting to wonder: Where is Edgar? Where is Max? Edgar finally came by and said that they had to take Max to the NICU because of his breathing, but that everything was going to be fine. What felt like hours past. I still hadn't held my baby. Edgar finally came into the room with the NICU doctor to give me and update of Max's health. He said that Max's breathing was irregular and they wanted to monitor to make sure everything was ok. They left again for the NICU. Someone brought Clare into see me and I pulled her into the bed with me. I was talking to her and snuggling with her when Edgar walked in. If you know Edgar you would know that Edgar is calm and really laid back. He's happy-go-lucky and we're always joking and laughing together. It's weird because we can joke about stuff that shouldn't be funny, but we laugh anyway. When he walked in I knew immediately that something was terribly wrong. His face was white. He had tears in his eyes. He had a hard time looking up and he said, "There's something wrong with his heart. They're taking him to Texas Children's." Even writing this today, I have tears in my eyes because I never want to see my husband, my best friend, look like that ever again. After he spoke those words, I lost it. I panicked, I cried out, I lost control in front of my beautiful daughter, my husband, my mother, my mother-in-law, and the lactation nurse in the room. The lactation nurse immediately pulled my head to her head and said, "You have to get it together right now so your daughter doesn't see you this way. Right now!" Harsh, but so true. I took the deepest breath and I pulled it together as much as I could. Clare was worried and I couldn't let her feel what I was feeling. At that point, I calmly explained what little I knew to Clare and I gave her back to my mother-in-law who was going to keep her over night. I also promised myself that this moment was going to be the last time that I felt sorry for myself or let my emotions take control of me during this process. Before Edgar left I said that we need to baptize him before they take him away. At that point, I had know clue how bad the situation was or how long we were going to have with Max. I also said that I wanted to hold him. Edgar said that I would have to come to the NICU if I wanted to hold him.

The nurse brought a wheel chair and I got out of bed (no small task for having a c-section 5 hours prior) and was wheeled down to the NICU. We entered and there was my beautiful baby boy under heat lamps. He really was beautiful. The NICU nurse picked him up and handed him to me. Again I was overwhelmed with emotions. How could something be wrong with him? He looked so normal to me. Full head of Tavares hair. Inquisitive eye brows. Beautiful lips. Little button nose. I let the tears drop off my face and onto his chest. I felt so helpless. How can I fix this? How can I make it right? Where's the magic wand where you can wave it over his little body and make everything ok? I held him for almost thirty minutes and Father Ignatius arrived to baptize Max. It was a powerful moment.


The Texas Children's transport team, Kangaroo Crew, came and it was time for me to say goodbye. It was such a strange moment, and I'm not sure that I knew exactly how to feel. I was wheeled back into my room without my newborn son and my husband. Edgar stayed with Max around the clock for the next 12 days. After two nights in the hospital I was discharged. Those were probably the hardest two nights of my life. My mom stayed overnight in the hospital with me, and friends came to visit throughout the day and at night. If it weren't for them, I'm pretty sure I would have crumbled. 


Saturday came, and I was leaving the hospital. We went straight to Texas Children's to see about Max...

Clare's Birth Story

I decided to tell Clare about the day she was born (minus all the unhappy details that came with my delivery). I told her how we woke up at 5am to go to the hospital. How she was so happy in my belly that she didn't want to come until 12:30am the next day. And how Edgar held her all night as she slept on his chest.

Edgar has been working really late these last couple of weeks and when he got home that night he collapsed on the couch. Clare went up and sat next to him and said:

"Daddy are you sleepy?"

"Yeah, baby I'm really tired."

"It's ok Daddy. You can sleep on my chest tonight."

A reflection of myself...

When I was three I ran away from home because I refused to eat my peas. Laugh it up because it is a story that has been retold countless times throughout my life and I've become immune to the laughter. I sat at the kitchen table for over an hour until I decided to make a run for it. I grabbed my winter coat, my cabbage patch doll, and my three wheeler and made it all the way down the street until my older brother caught up to me and took me back home. Last night I had a flash back to my childhood...

Clare has becoming increasingly interested in my cooking. She pulls up her little blue stool and stands next to me while I chop vegetables, mix ingredients, and prepare dinner. Last night was no different. On the menu was beef stroganoff. Clare likes noodles, ground meat, and sour cream, so I thought this meal wouldn't be a problem. She watch as I diced onions and commented how they smelled. She stood behind me as I browned the meat and started to prepare the sauce. Everything was going well until it was time to sit down and eat. I served her plate first, so it would have the maximum time to cool off and sat down to enjoy dinner. Edgar was working late and wasn't expected to be home until 8:30, so it was a mommy-daughter date. I put her in her high chair and placed her plate in front of her. Without even taking a bite, she looked up at me and said, "I don't like it." I asked her to try it before she jumped to conclusions, but she refused. The tears began to flow. For over an hour she cried and screamed about not wanting to eat dinner. After 40 minutes, I finally let her out of her chair and told her to go sit in time-out until she stopped crying. She sat there for another 20-25 minutes still crying as loud as when she began. The whole time I was trying to lovingly encourage her to at least try it. I made her a deal that if she took a couple of bites and did indeed not like it, that I would give her the banana and toast she was asking for. She still refused. When I was looking into her little face, puffy and red from crying, I kept seeing a reflection of myself. I thought to myself, "I've been here kid, and I know that neither one of us is giving up."

After she finally stopped crying in time-out, she crawled up on the couch next to me and gave me a big hug. She didn't say anything, but she sat there next to me and rested her head on my belly. I honestly thought she had cried herself into exhaustion, but she stayed awake. Around 8:00 she said, "Mom, I think I want to try the noodles." I put her back in her chair and placed her plate in front of her again. As I started to clean the kitchen, I could see her picking out the noodles without any sauce on them and eating them. She never complained, but it was clear she did not like the sauce. I let her take around 7-8 bites and then I asked her if she would like to try something else. She said, "May I please have a banana and toast with jelly?" I replied, "Of course."

When it was all said and done, I have to admit that to a certain extent I was proud of her. She was sticking to her guns and for over and hour she didn't give up. That was me when I was three, except I have a flair for the dramatic and decided to run away from such an unjust home. When I look back at how stubborn, passionate, and strong willed I was growing up, I understand that there were many times in my life when I could have directed these behaviors in more positive ways. I think it somewhat protected me because it made me really stick to what I believed to be right or wrong, but I also think that it made me a very critical and judgmental person. I missed out on a lot of friendships because of this. I know this may seem like a simple example of a two year old acting like a two year old, but it reminded me that as a parent it's my responsibility to lovingly temper her emotions into ways that are glorifying to God. Last night was a glimpse of what lies ahead with my little Clare. I can't wait for the bumpy ride!