Tony’s Diagnosis Story

Tony’s Diagnosis Story
By Mom, Cielo

When we found out that we were pregnant, we were SOOOO happy. We have a lovely little five year old daughter named Hailey who wanted a baby brother SO badly. It was hard for me to get pregnant and carry a child as I’ve suffered many losses, and after having my daughter, we couldn’t get pregnant. However, my daughter wouldn’t take NO for an answer. For six months straight, my baby girl would get on her knees and ask God for a baby brother-not a sister. Sure enough, after Halloween 2015, I started feeling sick and couldn’t keep food down. I was getting the shakes, so I took a test and sure enough, I was pregnant!

I went to the doctor and right away, he told me the baby was affecting my sugar levels, so I have to be put on insulin. Then my blood pressure started acting up, so my doctor said, “Lets schedule you an ultrasound to see what’s going on”.  At 13 weeks, we did an ultrasound, and he didn’t want to tell me what was going on. He suggested we do some blood work. He told me it would take up to two weeks to get the results. He called me back a week later and told me to come in. I felt like there was something wrong, and I didn’t want to go alone, so my wonderful hubby went with me. I could read it in his face that there was something he wanted to tell us, but didn’t know how, so he just pulled up the results. He started by saying “Your baby has an 98% chance of having Down syndrome” he also said, “there’s another test that’s more accurate if you would like to take it, you can also end your pregnancy since you’re only 14 weeks”. My heart dropped, how dare the doctor even suggest that.

The first thing my husband asked was what the baby’s gender was. The doctor told us it was a boy, and that’s when the tears ran out my eyes. I told the doctor, “If he has a heart beat, who am I to play God?” I saw it in my husband eyes that he felt broken-all the dreams he had for his son changed forever. We went home and my little princess came up to us and said, “Mommy mommy, is it a boy? If it’s a girl we’re selling her and trying again”. We told her she got what she wanted-she would have a baby brother. I wondered how I would be able to tell a five year old that her brother has Down syndrome. My husband and I started looking things up and reading about Down syndrome. I called my uncle who also has a son with Down syndrome and he put me at ease. He told me, “Cielo you are being blessed with an angel. Think about it, God is sending you this blessing because he knows you have so much love to give”. I was at ease and was OK, but then things got rough.

I had placenta previa, so every time baby Tony would punch down, I would start to bleed. I was always in pain, so the doctor put me on bed rest. The doctor had me go for an echocardiogram for the baby due to the potential Down syndrome diagnosis we had received. He also referred me to another doctor. Myself and my baby girl went in for this test. After the echo, the doctor began to tell me how baby Tony had a hole in the bottom two chambers of his heart and he was missing the artery that connected his heart and lungs. The doctor also explained that the baby was going to be a “blue baby”. My heart dropped. My daughter pushed the doctor out of the way, hugged me, kissed my belly, and wiped my eyes. She told me “It’s OK mommy, if my baby is blue and has a broken heart, I’ll give him kisses and make him all better”. She broke my heart with the love she already had for her baby brother. Her love for him is so pure. How would I explain this to her? Her next statement hit home, “Mommy just have faith like you did with me”.
And that’s EXACTLY what I did.

We went in for another echocardiogram. They found the missing artery! It was small,but it was there. By then, I started having my anti-parturm testing. When I was 33 weeks and a few days, I went for my test. Tony kept having d-cells, so they put me in the back for observation. My blood pressure was high, and my sugar began to bounce up and down, so they gave me two steroid shots to develop the babies lungs just in case he would need to be delivered early. They kept me overnight and then sent me down for an ultrasound. The next morning, when I got back up to the room, my doctor was there waiting for me. He just burst it out, “Cielo, baby Tony will be here tomorrow, I’m taking him out”. I began to cry, and told the doctor “He’ll only be 34 weeks, he’s not ready, he’s not cooked all the way”. But whether I was ready or not, he had to come out because he was in more danger inside of me then out in the world.

The next day I had my c-section, and my baby boy was born at 5 pounds, 2.9oz. They took him straight to the NICU and had to put a tube down his throat, because he was having problems breathing. I wasn’t able to hold him for five days, but even with all the tubes and IV’s and machines, he was perfect to me. He stayed at Mt. Sinai Hospital for a month and a half, and then he was sent to Advocate Christ Children’s Hospital. He needed heart surgery sooner then we thought. It is SO hard to see your baby go through so much and feel so helpless. He had his surgery, and was in the hospital for another month and an half. They told us that we could take him home, but that he would need a feeding tube and oxygen. They also told us if we were willing to learn how to manage these things, that they could send him home. I told them that I would do anything to have him home!  He was sent home one day before he turned three months and now has been home a whole month. I have to say that I’m SOOO in love with this little man! He has stolen my heart, his sister’s heart, Nana’s heart and Daddy’s heart. He bring SO much love and light into our world! I may still be new and not aware of what’s going on in life right now, but I thank God for the family and friends I have that are here to support and love us. I am so thankful for GiGi’s Playhouse Parent Support Group. I also want to thank Beth for parting me up with Laurie. Her and Emily give me hope everyday. If she can, I can! I also wanted to thank everyone from the bottom of my heart that prayed for our little man.
He is truly a miracle baby in my eyes