The Last Bit of Hope

April 3rd, 2019 11:20a.m

The technician is having a hard time getting pictures, again. After trying for so long, the cardiologist said he had enough pictures, so we can wrap it up. We were escorted two doors down to this small room, full of books, a round  table, chairs, and one window. The technician told us to  “ Have a seat, the cardiologist will come back and talk to you guys “. At this point I’m praying out loud, talking to God, asking him to spare my baby, us. This time too, felt like a long wait but I’m sure it wasn’t . A tall, handsome, middle aged man, with salt and pepper hair walks in and introduces himself as Dr.Shaw, the cardiologist. He is holding papers in his hands with the back facing us. Sitting directly across from us, he looks me directly in my eyes, and confirms she definitely has HLHS. I was devastated. He turned over his papers which revealed notes, a diagnosed, and images of hearts . Each heart photo has a title with hand writing all over it. He starts to explain how the heart photos demonstrate the three different open heart surgeries she will need to have a chance at life. 

He Explained :

The three surgeries are the Norwood, Glenn, and Fontan. Hypoplastic left heart syndrome (HLHS) is a severe heart defect. A baby with HLHS, left side of the heart does not form correctly. In a “ Normal “ heart, the left side job is to pump oxygenated blood into the aorta, and the large artery to the rest of the body. Which means the mitral valve, and aortic valve, are too small or completely closed. Although the left chamber walls are only about half of an inch thick, the left ventricle is the largest, and strongest chamber. Unfortunately, because the left ventricle is severely underdeveloped, it’s not capable of pumping blood to the rest of the body. The right side of the heart now has to pump blood to the lungs and throughout the entire body. In result, the right ventricle has mixed red, and blue blood. The survival rate is better now, compared to 30 years ago. 

I didn’t say anything, I couldn’t. I’m in shock, hurt, confused, angry, and concerned. It feels like my heart got ripped out of my chest. I just grabbed my man hand, and together we cried. Dr.Shaw then stopped to tell us that it’s comfort care, if that was the path we wanted to take and they would support us no matter what. We put that to an end, quick . Dr.Shaw then goes on to say “ Well if you two are ready to fight, we are here to fight with you. It is going to be a lot of work, nothing about this is going to be easy, but it will all be worth it. Our team is going to do our best to make sure she gets the best care. I know this is hard and a lot to hear, being a father myself I can’t imagine hearing these things about my children

I can’t sleep, or eat. I go to sleep crying, and wake up crying. If I don’t feel her move at least once in an hour I start to panic. Starting next week I have to go to the prenatal clinic every Monday, and Thursday until I get induced on the 29th. They will measure the fluid in her sac, watch the flow in the umbilical cord, give a non-stress, weigh, and measure the baby. I was told that the first surgery, Norwood, can take place from the time she enters the world, up to two weeks old. I won’t know until she’s here, and they see how she does on her own, which means I can push her out and she can be taken right from me and go straight into surgery. I can’t help this feeling I have of anger, I was angry with God. All I can do is ask why me? Why my first born? Have I already gone through enough? Everything is up in the air; how long will she be in the hospital, when she will have her first surgery, will I be able to hold her, will she survive? I joined a HLHS support group online, but nothing can prepare me for what’s coming. 

April 29,2019 9:30a.m

Today is the day. I get induced at 2p.m. I’m so anxious, I can’t wait to see her sweet face, then again, I’m so scared. No one can tell me what’s going to happen once she’s out but they will have to take her from me. 

To Be Continued… 

Confirmation : Part 3

I could give birth any day now, so it was urgent to see a high risk doctor for confirmation. I received a phone call later that day with two follow up appointments. I am to see the high risk doctor in two days at 2:30pm, then a cardiologist appointment the following day.

April 2nd, 2019 2:40pm 

 I’m lying here on the table getting more sonogram pictures taken, and all I can do is pray to God that the last doctor at my prenatal appointment was wrong. I prayed for my baby to be healthy, and to not be high risk. Bittersweetly, we were able to see her beautiful face twice in one week. The sonographer’s name was Angel, ironically. She was having a hard time getting pictures of her heart because of how Serenity was angled. She’s now full term and her body is covered with fat and muscles. These defects are looked for between 18-22 weeks because it’s easy to see through a baby body due to the fact they have no fat on them. Yeah I know, how the fuck they miss it? Anyway, the technicians aren’t allowed to tell you what they see, or think just in case they’re wrong; so for the entire 40 minutes I had to restrain from asking her questions about the condition they suspected her to have. It’s finally over. The nurse escorted us to the doctor’s office to wait for the doctor to read the results, and come tell us what he saw. I’m looking around and reading all the pamphlets on the walls about high risk pregnancy, drugs, support groups, etc. My heart is racing, stomach turning, and hands sweating, this anticipation is killing me. After waiting about 10 minutes which felt like 30 minutes, he finally is here. He is definitely my senior by a few decades, with glasses, and salt and pepper hair, who goes by the name Dr.Silver. He was the doctor who trained the head doctor, and owner of my prenatal clinic. He had several clinics throughout upstate, and was the one families and mothers travel to see. He’s really nice, and comforting. He confirmed that it was in fact Hypoplastic Left Heart Syndrome. He explained that Serenity left ventricle was completely underdeveloped, and she was going to need open heart surgery to survive. He continued to explain how she was really small weighing 4 pounds and 12 ounces at 36w6d. In result of her low weight I will be induced in two weeks. He gave us reassurance that our baby had a fighting change. He explained that he has been in this practice since 1988, and have seen so many babies survive this heart condition, as well as others. He recalled technology from the 80s being completely different from today’s technology, which play a big part in defeating deadly diseases, and defects. Babies are remarkable, and strong, he stated. He gave me my first piece of hope. We still have another appointment tomorrow at the Pediatric Cardiologist Clinic.

April 3rd, 2019 11:00am

We walked inside the elevator and pressed the 9th floor. I was already a wreck. Full of pain, anxiety, and fear. I wasn’t ready for this. I wasn’t for this, but I had to do it . My man is a strong believer of God, faith was never shot. He always held on to hope, but for me I was drowning in my emotions. Yet I still held on to the little bit of hope that Dr.Silver gave me yesterday. I still couldn’t stop shaking. After waiting a few minutes we got called, it was time for another sonogram. This was it.

To Be Continued …

April Fools 2019 : Part 2

“ March 30th, 2019 “

I turned 36 weeks today, full term. I’m excited, I want to meet my baby so bad. The anticipation was killing me. She has grown so much over these past two weeks. Most people didn’t recognize I was pregnant until I was about 5 months pregnant. Now look at me, I’m a hippo, need help getting up, have to do the scoop to the end of the couch, and for me to roll over takes 3 minutes; I’m over it. It’s time for her to come out, and working at Dunkin’ my feet and ankles are swollen often, but I enjoy working. I love making my own money. I have an appointment tomorrow, I’m exhilarated I’m going to see her face one last time before she comes out! Hopefully she let me see her lips for the second time, and move that arm she always has covering them. She’s stubborn, like me. 

The next day.. 2:05 p.m.

In a few minutes I will be seeing her little face. My appointment was at 2 but for some reason no matter how early we start getting ready we are always late. They called us to the back, checked my weight, and vitals signs. Next was the sonogram room. She has grown so much, she is sleeping as usual with that arm over her lips, as usual, but we were able to get her to move for a slip second. The sonographer was able to rewind and fast-forward what the wand revealed, so I can see when she moved her arm, put it back, opened her mouth, and made faces. Every movement. I thought she looked like me in the last sonogram but this session put the cherry on top. She had fat cheeks, with my button nose, full lips, and the doctors always spoke on how much hair she had. She was perfect. I recalled the technician asking me to move certain ways , and looking concerned but I let it go over my head. I was in my own world. My man went back to the waiting room to wait for me, while I waited for the doctor to come and discuss everything with me. I can already tell by the look on her face it wasn’t good. She started off telling me the different parts of the heart and how it’s supposed to form. “ When the heart forms it has two ventricles, a left and a right. We don’t see her left ventricle, we believe she has a serious heart defect named “ Hypoplastic Left Heart Syndrome “, in which the left ventricle does not develop correctly. She will have to undergo open heart surgery in order to survive. I couldn’t hold anymore. I broke into pieces, they encouraged me to not hear this alone so my man came back to the room I was in. Despite my tears, my face must have read fear, and pain because his reaction was to instantly comfort me. I can tell by his face I have made him deeply concerned. The doctor proceeded to tell him everything she had told me. The doctor told us “ We will be setting up appointments for you to get confirmation. We had to go see a high risk doctor, and cardiologist for more images to be taken. My mind is just racing, how did this happen? Did I do anything wrong? Is my baby going to die? Why ? But I still had some type of hope they were wrong. I remember leaving and the first person I called was my oldest sister Ava, we had become close over the last 3 years, this was her child as much as she was mine. My voice was cracking because I was trying to not cry.

Me : “Serenity could have a heart issue and need open heart surgery.”

Ava : “ Is this a joke? “

Me :  “ What? ‘ . I was confused as to why she will ask me that.

Ave : “ Bitch are you playing with me ? It’s April Fools “. 

I started to laugh and said “ No this is not a joke, I wouldn’t play like that.”

 I totally forgot today was April Fools, oh shit. 

The Devil You Created

She says I’m disrespectful, and she can’t stand me . She tells me to shut up and get out her face. She claims I don’t know how to talk to people, and it’s not what I said but how I said it. Ha, isn’t that funny, because neither does she know I’m the devil she created . She can’t see how her life impacted mines, she doesn’t realize that all her trauma became mine. That every little thing that she exposed me too fucked up my mind. Her toxic coping skills showed me that’s how you heal . She must not know that not loving herself made her lack in many things. She couldn’t teach me to love myself, and see that was the stem to my problem. I looked for love in all the wrong places, and ended up being in unhealthy, toxic relationships as a clarification. Cutting, sex, and drugs started to feel so good because it helped me block out all of those feelings I buried so deep inside of me. Telling my inner child fuck all that antidepressants and therapy, this is all we need! But that was slowly killing us emotionally, and mentally. I turned into everyone who hurt me; I began treating people in the same manner as they did me. I just wanted you to listen to me, and hear my cries but you were so stuck in your own world and all those guys. Allowing them to use you in every way possible, they raped your mind. They killed the little bit left of you, you had inside. You couldn’t see how much I needed you, you just saw who I became, not realizing this is the devil you made. I begged, and pleaded with you in the midst of finding myself  to give me another chance, but instead I was rejected and neglected once again. I was told to stop trying because you didn’t want to have anything to do with me, and that shit bugged me out, like how could that be? As a child I saw you forgive the unforgivable from people who didn’t share no blood, but you literally gave me life but wasn’t willing to forgive who I was . You say I did, and said things but refuse to talk about you; What about that time you said I wasn’t your child anymore, and I was dead to you. Telling me everything is my fault and I’m going to be the reason you die . You Made me feel like the black sheep and I wanted to die . It took me years to see that healing starts with me. I had to take time to forgive myself, and see myself with a new pair of eyes. But now I hope you see that the devil you created is no longer alive.