Many people have asked about our story. Truth be told it hurt to talk about it. However, (deep breath) I am hoping with this blog I can overcome my fears and be able to open up and let people know our story and be able to openly talk about our new lives. It wasn’t until I heard someone else’s story, just yesterday, and saw their successes that I realized just by seeing a picture it gave me the Hope and Courage that I much-needed. If by writing out our story I can reach one person the way I was reached then I know it will be worth it.
November 13th, 2009 our lives dramatically changed. My OB had made me go to the hospital for another stress test. I thought nothing much of it, as I had plenty before. While at the hospital I was told that I had severe pre-eclampcia and that I was going to be having my daughter within the hour. What??? This couldn’t be! I had another 5 weeks until my official due date, I can’t have her now she isn’t ready. And (me being a little superstitious) it Friday the 13th!!! I can’t have my baby on Friday the 13th! That’s bad luck. And we weren’t even close to being ready. No name picked out or anything. I panicked the night before and made my husband take me to Wal-Mart to buy toiletries, although I was on bedrest, but I had no idea as to why I had to go. Looking back it must have been my maternal instinct that something just wasn’t quite right. Even my mom had left work when I was at the hospital during the earlier hours for my stress test… I said, “Mom, you’re silly. I don’t know why you left work!” Later after we found out I was going to be meeting my daughter that day, she explained that mom’s just know.
I remember going into the room to have my c-section and I was asking the nurses where my daughter will be after my surgery is done, and will she be ok. I was desperately needing someone to tell me that everything was going to be just fine. At 4:08pm Alyssa Roze was born. I heard her cry just as I had heard my son, however she sounded like a cat meowing. Is she ok? How is she? No one was answering me. They were all talking amongst themselves. Say something, anything! Finally one of the doctors said “she’s a little tiny”. A little tiny? How tiny? Why have they not asked my husband to come over and cut the umbilical cord? What is wrong!?! Finally, in what seemed like forever the nurses asked Chris (my husband) if he would like to see her. He went and saw our daughter and not a split second later the nurses were rolling her by as they briefly paused on the way out of the room to tell me that they were taking her to the nursery. WAIT? Earlier, when I had asked the nurses where my daughter would be they said she will be in the same room with me unless something was wrong, then they would take her to the nursery. So what was wrong? Why could no one tell me what was wrong with my baby girl? The nurses asked Chris if he wanted to go with her to the nursery. He asked if I was ok with that or he could stay with me. GO I said immediately, while inside I felt I still wanted him by my side. After my surgery I was back in my room but I still haven’t really gotten to see my daughter. My OB had come in and told me b/c she was so small the NICU team at San Juan was going to come and transport her to that hospital b/c they are better equiped to take care of our daughter. (3lbs 13oz.) So now I was being told that my daughter was not even going to be in the same hospital as me? I just want to see her and hold her! But if she is “tiny” and they will give her better care at the other hospital then of course thats what needs to be done.
Hours later Dr. Kao, an NICU doctor from San Juan, came in to meet with me. Chris had just left a few minutes before to go get something to eat with his parents and our 2 year old son Devin, then he was heading over to the San Juan hospital to be with Alyssa. I was expecting to just meet the doctor briefly and then he would finally let me see my daughter, before she left. But to say I wasn’t expecting to hear what the doctor began to tell me is an UNDERSTATEMENT. All these foreign things started coming out of his mouth. Terminology I have never heard before. One thing I heard loud and clear was HEART DEFECT. Wait… my husband. He needs to be here, hearing all of this alone was overwhelming, he’ll have questions, I have questions, I don’t know what they are at the moment but I have them. The doctor assured me he would meet with my husband as soon as he got to the other hospital. My mom called Chris’ dad and asked him to go with him so he wouldn’t be alone when he heard the news. Dr. Kao continued to explain to me about the tests they had run while here at the hospital. The loud heart murmur and x-ray of her heart which looked like the shape of a boot. He believed that she had a heart defect known as *Tetralogy of Fallot. He wanted to order an echo cardiogram at the San Juan hospital to confirm his diagnosis. A few minutes after the doctor had left the room the whole NICU transport team had wheeled my daughter in to see me. She was in a scary looking incubator, and because of the surgery I could barely even lift myself to see her. I asked my mom to quickly grab my phone so I could have a picture of her. I got to open one of the round doors in the incubator to briefly touch her foot. Then she was gone. Confirmation of TOF came later that night around midnight.
The next morning came all to quick. Wait – maybe it was all a dream. This isn’t really happening, it couldn’t be. Nope this was not a dream, this was the start of a whole new life. All I wanted was to be with my daughter. Get me out of this hospital. I put on a show for my OB and convinced him that I was ok to go. Staples? I can get those out later. Get me to Alyssa. Alyssa Roze made such great progress while she was in the NICU. She got her feeding tube out, got the tube out of her belly button out, got taken out of her incubator, etc. She was amazing. The doctors and nurses all called her feisty and boy do I know why. Family helped out a lot so we could take time to go to the NICU and be with our daughter and help with her cares. Devin couldn’t go in to see her, however one day he got to peek though a window. He has his own special picture of his baby sister and every time we watched the video he would hug and kiss Alyssa on the tv.
I will admit that I became jealous and angry for those parents who were getting to leave with their children. ( I still felt happy for them at the same time – hard to explain). Seeing babies with their parents in the grocery store and just out and about I had a hard time with. Why can they have their babies but I can’t have mine. It wasn’t fair! I was going through ever emotion possible, especially guilt. Although they have no known cause of TOF, it was my fault! My daughter never asked for any of this. How dare I get pregnant and make her have to suffer through this?
Black friday 11/27/09 – this was the day that I got to spend the night at the hospital with my daughter. Yay! This must mean that she gets to come home soon. I was so excited! After we got to the hospital we had planned that I was going to stay there and Chris was going to go home and stay with Devin. After finding out that they were taking all of her monitors off for the first time since she’s been there ( her vitals were going crazy today) and stick me in a room by myself, I begged Chris to stay with me. I was afraid to be alone with her. What if something happened? As you can imagine I didn’t get any sleep at all. My eyes were glued to her chest making sure it would rise after every fall from 8pm to 8am.
A few hours after we had gotten home, I received a call from the doctor at the NICU. Alyssa passed her car seat test and could come home later that night if we felt comfortable. YES! I wanted to get in the car right then and go get her. Part of me was still afraid. What if she has a Tet Spell..we know CPR now and can deal with it, we will have to. How will Devin react? Will we have to separate them? All sorts of things were running through my mind, but I was certain that I wanted my daughter home.
Alyssa Roze has been home a week so far, and it has been FANTASTIC. Sure the first few days she would wake up every hour to hour and a half and she is a little higher maintenance than our son was, but nothing beats the feeling of having her home. Her surgery, if all goes well will be when she is strong enough at around 6 to 8 months. Yes, it will be OPEN HEART SURGERY, but hopefully it will only be a one time surgery. She has been to the pediatrician 3x this week and tomorrow she has an ultrasound for some issues with her belly button which hasn’t closed still after 3 silver nitrate treatments. Friday will be her appt with her cardiologist at his office, and we are praying for the best. She is currently 4lbs 12oz.
I apologize to those of you who were wanting to hear the story of how Alyssa Roze made her arrival prior to today. I can assure you it was nothing against anyone. It just took me some time to be able to process everything and learn how to cope with the situation. We love both of our children, and we are truly blessed to be surrounded by family and friends that are so wonderful.
*Tetralogy of Fallot (fuh-LOE) is an uncommon condition involving defects within the heart structures of infants and young children. Together these defects result in oxygen-poor blood flowing out of the heart and into the body.Tetralogy of Fallot is present at birth and usually diagnosed during infancy. However, it may not be detected until later in life, depending on the severity of the defects and symptoms. Tetralogy of Fallot occurs in about five out of every 10,000 babies. With early diagnosis followed by appropriate treatment, the majority of children with tetralogy of Fallot live into adulthood.Tetralogy of Fallot treatment for most babies involves a type of surgery called intracardiac repair. This surgery is typically performed during the first year of life. During this procedure, the surgeon places a patch over the ventricular septal defect to close the hole between the ventricles. He or she also repairs the narrowed pulmonary valve and widens the pulmonary arteries to increase blood flow to the lungs. After intracardiac repair, the oxygen level in the blood increases and your baby’s symptoms will lessen.
