Sometimes Our Lives Take Unexpected Turns – Welcoming Aiden!

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Sometimes our lives take unexpected turns (some good & some bad) and all you can do is step out on faith and trust that God is working on your behalf. With our youngest being seven years old, for years we had been adamant that our little crew was complete and we had no plans to change that. With so many changes taking place in our lives over the course of the last year to year and half, I couldn’t help but think that God had a sense a humor and was throwing some serious curve balls at me…we are expecting a new addition to the family.

Fast forward to my 20/21 week ultrasound (November 13th), it started normal. The sonographer was pleasant and joking in conversation, but something change in her tone as the baby appeared on the screen and she grew quiet. At that moment, in my heart I felt that something was wrong. I felt myself getting tensed and emotional, but trying to wait until she said something. She went over the images over and over trying to confirm what she think she saw, and said to us, something looks abnormal. Tears streamed from my eyes and Trelas quickly tried to comfort me by moving closer to my side and holding my hand. She went on to say that she had to excuse herself to locate one of the doctors to see the ultrasound as well. In just minutes I went from having a healthy baby boy, to thinking the absolutely worst and hearing terms like CPAM, Sequestration, Diaphragmatic Hernia. I memorized those words and tried to place anything else in my memory that I could research. From the ultrasound, our little guy (who we have named Aiden) heart was on the right side of his chest (instead of the left) and there was a mass where the heart is normally positioned.  Additionally, it appeared to be an opening in his diaphragm and the ultrasound showed his stomach by the mass (the stomach is suppose to be below the diaphragm). The doctor said it looked like the Congenital Diaphragmatic Hernia, which in comparison of the three diagnosis I listed above was the more serious condition. Immediately I was scheduled to visit a  neonatal physician at a high risk pregnancy center later that day, no time was being wasted. Before the next appointment, I had a couple hours so we went home and I started researching these diagnosis. Here is a better explanation:

CDH (Congenital Diaphragmatic Hernia):  The wide, flat muscle that separates the chest and abdominal cavities is called the diaphragm. The diaphragm forms when a fetus is at 8 weeks’ gestation. When it does not form completely, a defect, called a congenital diaphragmatic hernia (CDH), is created. This is a hole in the muscle between the chest and the abdomen.

The majority of CDHs occur on the left side. The hole allows the contents of the abdomen (stomach, intestine, liver, spleen, and kidneys) to go up into the fetal chest. The herniation of these abdominal organs into the chest occupies that space and prevents the lungs from growing to normal size. The growth of both lungs can be affected. The result of this is called pulmonary hypoplasia.

While in the uterus, a fetus does not need its lungs to breathe, because the placenta performs this function. However, if the lungs are too small after the baby is born, the baby will not be able to provide itself with enough oxygen to survive.

BPS or Pulmonary Sequestration (Bronchopulmonary Sequestration): A pulmonary sequestration (also known as bronchopulmonary sequestration) is a cystic piece of abnormal lung tissue that does not work like normal lung tissue. They usually appear next to the lung (extrapulmonary, aka extralobar sequestration) or within one part of the lung (intrapulmonary, aka intralobar sequestration). We do not know what causes one part of the lung to develop abnormally. The cystic tissue involved will never function as normal lung tissue.

There are several types of cystic lung lesions including Congenital Pulmonary Airways Malformation CPAM (aka, congenital cystic adenomatoid malformation CCAM), pulmonary sequestration, and defects that are a mixture of these two. The abnormal piece of lung can be microcystic (many small cysts) or macrocystic (several large cysts). Pulmonary sequestrations are distinguished from CPAMs by the presence of a blood vessel that comes directly from the main artery (aorta) into the lung mass.

Soon after, we were at the high risk center and meeting with doctors and more sonographers. This had to be one of the most intense appointments I ever experienced, image after image, the sonographer viewing the images, the doctor viewing the images, them trying to determine the baby position, where his organs were and so on, they finally told me that they believe it was not CDH (the more serious diagnosis), but instead BPS (serious yes, but not as serious as CDH).  So in a half day, we went from thinking we were having a healthy baby boy, to him being diagnosed with CDH (which has a 50% survivor and 50% non-survivor rate), to him being diagnosed with a lesser condition. Regardless of the outcome, it is inevitable that Aiden will require surgery after delivery, so we were scheduled to meet with a pediatric surgeon on another day and scheduled for another point with the neonatal doctor accompanied by a pediatric cardiologist. Our doctor was extremely kind, comforting and explained how this will indeed be a journey for us and how Aiden will have multiple teams now until delivery to make sure he receives the best possible care. The time in between appoints again were filled with so much emotion, more research and waiting. When the time came for my next appointments at the high risk center Nov. 19, Dec. 3 & Dec. 17, the neonatal doctor and pediatric cardiologist could not make a definite diagnosis on it being CDH or BPS. Which also meant, that CDH once again was not completely ruled out. During this time, after keeping it from the kiddos (we wanted to be sure that it was the right time to share with them), we finally had a discussion with them, explained what was going on and took them out of school  to accompany us during one of the visits, so they could see their baby brother. They were ecstatic by the news, but saddened by Aiden possibly not being 100% healthy or the even the possibility that he may not make it. They love so hard and a day does not go by without them saying special prayers for him, talking to him (Aiden I love you, I can’t wait to see you as they gently kiss my stomach or hug my waist), and asking me how’s he doing.

On January 7th, we returned to the high risk center and the neonatal doctor and pediatric cardiologist finally confirmed that Aiden does have BPS, along with CDH.  Basically, in just under two months, we went from healthy, to a serious diagnosis, to a not so serious diagnosis, to in fact, both of them. Right now, I am currently entering my third trimester (28 weeks) with March 31, 2016 as my due date. Although Aiden has been diagnosed with both conditions, he appears to be thriving in the womb, growing and is extremely active. The truth is that although he has been diagnosed now, there is no real way to determine how serious his condition is until he is born and the teams evaluate him. In all honesty, some days are better than others. To feel this active little guy kicking constantly is a joy, but I also have the occasional thoughts in the back of my mind…what if I am going through all of this and experiencing him, and he does not make it…just typing that made tears fill my eyes. I am encouraged on most days, but then I find myself researching the diagnosis again, reading through the CDH foundation site and emotions flood every inch of me. I try not to engulf my thoughts in what it could be, but at the same time I know it is vital that we are informed and understand everything that we are facing and could possibly encounter. However, regardless of what the outcome may be, Aiden is already loved so much by our family.

With so much to take in and consider, we had to  face this together and be able to cope with it before sharing with others….this is also why I stepped away from a social media presence and Kia’s Fit Fare for a while.  What I am asking from each of you, is that each night you find it in your heart to say a special prayer for our family…that is all. I believe that God has always shown favor on me and our family and this time is no different, but it will take love, faith and prayers to get through it.

To READ Aiden’s Story – Love, Hope and Faith for Aiden

On FaceBook: https://www.facebook.com/LoveHopeFaith4Aiden/

Love & Blessings, Kia

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