The Best Day of My Life
My pregnancy had been the longest and most difficult phase of my life but as soon as induction day arrived, it was a blur. I remember seeing Ryder's face for the first time and the world had stopped. It was almost surreal. This is the beautiful little boy I had cared for in my stomach for 9 months and now he's finally here. It was a lot to take in but it was also such a beautiful moment. For the first time, I felt unconditional love. Ryder was the most precious and sacred form of life. My hopes and dreams were now in physical form and in the palm of my hand. I couldn't help but stare in complete awe. Although he was completely perfect to me, the nurses quickly became concerned with the coloring of his skin. They determined him to be "jaundiced" and within a matter of minutes he was taken from me and set under "therapeutic blue lights." As a new mother, this broke my heart, but little did I know this was nothing compared to what we had ahead of us. Afterwards, I was granted the time back and spent most of the night with skin to skin contact to see if it helped calm down the jaundice. The morning after Ryder's birth, a technician came in to perform his newborn hearing screening. During the test I was chit chatting it up with my mom with absolutely no concern regarding his hearing. I mean what mom is initially worried about their son failing his hearing screening? The test finally finished and the technician told me he had failed his screening in both ears. My mom and I completely stopped our conversation in shock. I thought I had heard her incorrectly. I started to cry a bit. No mom wants to hear that their son might have a disadvantage ahead of them. The technician quickly reassured me it was normal for infants to fail the first time and it was probably just fluid in his ears. She said she would come back tomorrow and check again. This helped me relax a bit. It must be the fluid... no one on either side of our family has any hearing issues. There wasn't anything to be concerned about. The next day she came back and he failed in both ears once again. I had a pit in my stomach. The technician still assured me his hearing could still be okay and to come back in a few weeks to try again in case its taking the fluid awhile to drain out. I remained hopeful and tried to put the situation in the back of my mind. I mean we were still concerned with him being jaundiced any way. The therapeutic lights seemed to help his bilirubin levels and we were released on time. We went home with our little boy and things were looking up. Everything was going to be okay.
Diagnosis of Hearing Loss
The couple of weeks after we were released from the hospital was a time period of false hope. I was in denial with the idea of my son having a hearing problem and I would try and convince myself that he could hear. I would do little tests of my own. If I heard the dog bark, I would look over to see if he was startled, I'd clap my hands around him to see if he would budge or blink an eye. I would try and find any kind of loud sound and see if it startled him. It never did. Nevertheless I would still talk to him (and still do), and at times it would seem like he could hear me. I eventually convinced myself that everything was fine. He got a third hearing test about a month after he was born. He failed that one as well. I asked if they could detect any kind of hearing in either ear and they weren't able to give me any kind of detailed information. They said it was a "pass or fail" kind of test and the next step was to get a more sophisticated test called an ABR. This would determine what kind of hearing loss he had and what caused it. This process ended up taking way longer than it was supposed to, because Ryder's ear canals were so narrow and small. We tried getting the ABR test done 3 times in the following 2 months but could not complete it because the instruments did not fit in his ear.
In the meanwhile, this was the biggest issue at hand. I was devastated. I thought about how I may never hear my son call me Mommy. I thought about my son never getting to experience the little blessings of hearing music and having a favorite genre, or hearing the sound of rain to help him fall asleep. Or being able to hear me tell him I loved him. I was afraid of the communication barrier. I was afraid of reaching out and learning sign language. I thought it was the end of the world. And until this day I am haunted and ashamed of even thinking such things. I would do absolutely anything to have it to where my sons only disadvantage was being unable to hear. And I feel like such a fool for thinking the way that I did.
Fast forward to May 2018. Ryder's ears had finally grown and the canals opened up enough to where he could get the ABR done and we could finally get our diagnosis.
May 7th, Ryder was diagnosed with severe to profound hearing loss in both ears. The cause was sensorineural and possibly conductive as well.
First 4 Months of Life
My family was released 2 days after I gave birth to Ryder. He had elevated bilirubin levels and had been jaundiced but with the help from the phototherapy lights, it dropped his bilirubin levels down enough for us to be able to come home. 3 days later, Ryder had his first appointment with his pediatrician. His doctor was quickly concerned with the yellowness of his skin, and had requested blood labs to test his bilirubin levels. Sure enough they were high again, and he was jaundiced. We were sent to the Texas Children's ER center, and admitted into the hospital where we stayed for another 3 nights. He was set under phototherapy lights again, and this time it was VERY strict and we could not hold him or get him out at all. Not even when feeding or changing his diaper. He was to remain under the lights at all time. The doctors finally reduced his bilirubin levels down to normal range and we were sent home. I prayed that this was the end of it. And that we could finally stay home and enjoy our time being a new family.
He had a follow up with the pediatrician the next week. Bilirubin levels were fine, but now we had a new issue arising: my son's growth.
Ryder was little from the start. He was born at just 5 lbs 16 oz. However he was having trouble gaining weight. He dropped down to 5lb 4 oz within the first week and a half. His pediatrician said it was normal for babies to lose some weight within the first week but we needed to keep an eye on it. He failed to gain in weight in the next couple of weeks even after I did everything I could to make sure he was eating enough. This caused for his pediatrician to request a blood test to see if their was anything unusual going on with his liver. We received a call a day after the test, his pediatrician said his unconjugated bilirubin levels (unrelated to the bilirubin levels that caused his jaundice) were extremely elevated and that we needed to go to the ER as soon as possible. Again, we found ourselves being admitted into Texas Children's Hospital. This is when life got really hard for us. For the next few months we were in and out of the hospital, getting more and more blood tests drawn. It had gotten so bad that at one point, 3 different lab technicians had to hold my son down to try and find a vein to produce enough blood to draw. I had to sit there, helplessly watching my 3 month old son get pricked and held down by 3 technicians while screaming and crying. It was the worst day of my life. After several tests, and several visits with our new liver specialist, we were given an idea of what might be going on. Ryder's liver specialist was concerned with the size of Ryder's gallbladder, and the elevation of his bilirubin levels. He brought of the term, "Biliary Atresia." If this was in fact the correct diagnosis, my 3 month old son would need a liver transplant or else it would be fatal. This sickened me. I cried and cried and cried. He now needed to under go anesthesia and have a liver biopsy performed to get the diagnosis. As you can imagine, that day was a very long day. I sat for 3 hours in the waiting room in suspense. So many things could go wrong. He might not wake up from anesthesia or he might indeed have Biliary Atresia. 3 hours felt like an eternity. He woke up fine, and in a couple of days we received the results.
He did NOT have Biliary Atresia.
I thanked God for it, but if not Biliary Atresia, then what is it? It seemed like we would never get our answer. In the meantime Ryder was placed on a continuous feeding tube called an NG tube to help him gain the weight he needed. His liver specialist also requested for a genetics test to be done to see if we could find out diagnosis.
Any Tips that are left will be toward Ryder's medical expenses.