This is a blog entry I've been meaning to write for quite some time. It's Tanner's birth story. I have a feeling that I will be crying during my typing as I can feel the tears welling up already just thinking about the emotions.
I went into labor February 24, 2009. I remember being so upset that they may have to do a c section because of the cord being around his neck. They moved and tossed me around hoping to change his position and it finally worked. I was so relieved. I knew that if I had a c section that would limit what I could do with Carter. He had just turned 2 years old and I was already so worried that he would feel like he was losing me a little bit with a new baby around.
On February 25, 2009 at 12:48am Tanner Robert Aman was born. As they placed him on my chest and we met eyes......I knew he looked different. His little lip wasn't "perfect". It looked like a mild cleft lip. It subtly pulled the left side of his face down. His nose looked uneven....one nostril bigger than the other. I said it out loud. Everyone in the room pretended they didn't see it.....but I knew it was there. The nurses took him across the room to clean him up. I thought back to my 3D ultrasound where I clearly stated that I thought I had seen a cleft. They assured me I was mistaken. HOW COULD THEY BE WRONG???? I was so upset about this imperfection!!! I didn't know at the time how much worse the night was going to get. I remember Tanner not crying. I couldn't see what they were doing with him. They told me he was 6 pounds even and 18 inches long. We had family there so they wrapped Tanner up so everyone could hold him but I could tell the staff was anxious to get him back. Everyone was passing him around and celebrating.....I felt numb. I didn't feel like I was in the room. I was not celebrating. Although I was upset about Tanner's lip and nose.....deep in my gut I think I knew it was just a small part of something much bigger.
After family left we were informed that they were going to have Tanner in the NICU because there were some other worries. They said Tanner's testicles had not dropped and were still up in his abdomen, that he could possibly have hypospadias and he was having some respiratory issues. Tanner couldn't come back to my room. We visited him in the NICU where he was in a small breathing tent. We couldn't hold him. I was heart broken.
The next morning we were told they would be transporting him to The Hospital of the University of Pennsylvania (HUP) which was right beside The Children's Hospital of Philadelphia (CHOP). He would be seen by CHOP doctors even though he was at HUP. I begged the doctor to discharge me so I could be with my baby and he gladly did so. When we arrived at the HUP NICU we were met by wonderful nurses that told us the genetics team wanted to speak with us. When they arrived there was an entourage of white coats led by and older, wise looking woman. She immediately began picking Tanner apart. Wide spaced eyes, ear pits, long big toe, asymmetrical skull, finger like thumbs.....the list just went on and on. Things that we hadn't notice at all. She informed us that when there are so many "little" anomalies that it usually is a part of "one big problem"...meaning a genetic syndrome. She said they would take tests and send them away for genetic testing. In the meantime Tanner would stay in the NICU ad undergo other tests to check his vital organs to make sure everything was working properly. He had an ECHO for his heart which turned up nothing. That was such a relief. An ultrasound revealed that Tanner had a horseshoe kidney but was functioning properly. Everything else looked good. Tanner was having major feeding issues though. He wanted nothing to do with nursing which was so disappointing. I felt it was the best thing I had ever done for Carter. He had such a healthy infancy. I began pumping but even that from a bottle was a struggle.
Justin and I were not allowed to stay at the hospital. Every night we would go home and be with our other boys hugging and kissing them more than ever. After they would go to sleep we would relentlessly research genetic syndromes with the symptoms that Tanner had.....just desperately looking for an answer. The wait and the endless list of genetic syndromes was driving us crazy and completely exhausting. Everyday I would wake up, get the boys breakfast and drop them off with one of our relatives that helped us during this time. Then I was back at the hospital. I felt so bad for Tyler and Carter. They had no idea what was going on but they definitely knew that Justin and I were not around like usual and that something was going on. They still had not met their baby brother that they knew was no longer in my belly.
At the time I didn't realize how genetic testing worked. I soon came to realize that Tanner was being tested for one genetic syndrome in specific but I just didn't know which one. I had overheard two of the NICU nurses talking about Tanner. One said to the other "He's being tested for _____________ syndrome." Of all the words for me NOT to hear...it was the actual syndrome name. I was so mad at myself. I begged the nurse to tell me but she said she didn't know what they were testing him for...that I hadn't heard her right. I knew what I heard and I knew she was not allowed to tell me. That didn't make it any less frustrating though. I couldn't believe that the old wise woman knew what to test Tanner for just by looking at him. Especially after my long nights on the Internet researching the endless list of genetic syndromes. There were so many. Whatever she was testing him for I was sure is what he had. I discretely tried to eavesdrop on the nurses charts and notes for the next few days but with no luck. These were the longest days of my life.
On Tuesday March 3rd as I was driving into the city to the hospital and my phone rang. I answered the unknown number with hesitation. It was a social worker informing me that given my sons diagnosis he would be eligible for social security due to his disabilities. My heart sunk. What diagnosis? I had not been given a diagnosis!!!! I was mad at her. This is not what I wanted to hear and especially not how I wanted to hear it. She apologized up and down and rushed off of the phone with me. I immediately called Justin in tears. He was already at work in the city and said he would meet me at hospital. Over the past 6 days we had many deep conversations. We agreed that we could deal with any physical disability....but both prayed that he would mentally be capable of a normal childhood and life. Deep down I feared this wasn't the case after the call from the social worker.
Justin met me at the NICU and as soon as we got there we were advised that the genetics team was on their way to speak with us. This was the moment.....the moment we had been anxiously waiting but also dreading at the same time. Soon enough the entourage of white coats with their wise leader arrived. All stone faced. We were taken in to a room and we all sat down.......all eyes on us. I began sweating.....then the hot tears rolled down my cheeks. They hadn't even started talking yet. The wise woman began telling us that Tanner had a syndrome called Wolf-Hirschhorn syndrome. One of her helpers handed Justin and I each a printed out packet on the syndrome along with a map of Tanner's 4th and 8th chromosomes. She said Tanner was missing a piece of his 4th chromosome and that there was a duplication of the 8th chromosome replacing it. She went on......"moderate to severe mental retardation". My heart crumbled and the tears streaking my cheeks turned into fountains as I began sobbing into Justin's chest. She still continued "50% chance of walking, 50% chance of talking, 93% chance of seizures, failure to thrive, small stature, most likely would need a feeding tube, little to no personality, little to no quality of life, and the worst.....34% chance of death before the age of 2. The rest is a blur. I remember holding Tanner before we left. I remember rocking with him.....sobbing. The nurses told us we had to get Tanner eating before he could come home with us. The drive home was quiet. We had called our parents and siblings and told them the news.
When we finally got home our house was filled with close family members that had gotten the news. My sister was the first person I saw and i crumbled in her arms crying like I had never cried. The whole family was crying.....sobbing actually. It was by far the worst day of my life. Nobody knew what to say to us. All we could do was hug each other and cry.
The next day we did what we normally did. Justin went to work and I went to the hospital. Tanner had to drink 40MLs of breast milk 4 times a day before he was able to come home. The NICU nurses are busy and each are taking care of several babies.....most of which seemed like they didn't have visiting parents. This meant that Tanner was given 20 minutes to eat his 40Mls. If he didn't he was given the rest via a tube that went through his nose. I found that if Justin or I was there for each one of his feeds and he was given a little more time...he would finish it. This was now my mission to get our baby home. The hectic schedule of driving to and from the city in the crazy city traffic and barely seeing our other boys was no fun for any of us. So, this is what we did. We posted ourselves at the hospital for every feed. We took the boys to the NICU on Saturday March 7th to meet their baby brother. We were told that if Tanner continued to finish his bottles through the weekend he would be able to come home Monday. It was hard leaving without him that day. Now that we had all been together I didn't want us to be apart again.
We continued our feeding routine through the weekend and Tanner was able to come home on Monday March 9th. We had set up 9 different specialist appointments within the next month before we even left the hospital. We were so excited to take Tanner home but so nervous at the same time.
Here we are almost 2 and half years later and Tanner is an amazing little boy, touching everyone that he meets. He does have a feeding tube and has had seizures but he also has tons of personality and is thriving at his own pace. Obviously things are so much better than we expected and I couldn't be more happy to say that. We continue to take things one day at time, let Tanner be himself and thank God for bringing him into our lives.
