Monday, October 6, 2008

A Little Backstory- Our Family

Scroll Past the video for our written account.

My name is Ellyn. I have a husband, John. I have a daughter, Ava, who is incredibly beautiful, silly, dramatic and just exactly like me. She turned 4 in August. My oldest son, Jace, just turned three, and he is the light of our lives...our entertainment and laughter depend on him every day. Our son Eli came next. With us for only eight months, he died just before he was born. He would be 2 on March 28th. He was a gorgeous baby...jet black curls, beautiful lips...there will not be a day that goes by that I don't wonder what his personality would have been like.

In July, we were thrilled to welcome our third son and fourth baby, Seth Broderick. He had a rough start as he arrived six weeks early and was in danger of not making it at all. He rallied, though, and we were able to bring our baby home! At four weeks of age, Seth was diagnosed as profoundly deaf, most likely due to an antibiotic he was on the NICU.

This blog is about our family as we navigate life doing our best to Glorify God and show Him to others as He was shown to us when we needed it most. While this is "mostly" about Seth as we deal with his every day triumphs with cochlear implants, I also write our day to day struggles and triumphs with all of our kids, and mourning the son we lost.

For the longer version of our story, please continue reading!

After Eli was born we took off as a family to New York City to deal with it all. We had spent the previous eight months planning for our third child, only to find out that we wouldn't be keeping him, even though he looked perfectly healthy, a chubby 6 pound 6 ounce baby boy, and we would never know for sure what it was that killed him. We would only hear over and over that all the tests said he had been perfectly healthy and that if he had been delivered hours earlier, chances are he would have been fine.

Mothers feel guilt for almost everything. Moms feel guilt over whether their kids are getting too much socialization or not enough, whether you have them in the right schools with the right friends and the right imagine how much guilt you feel when you are told that if you had only gone to the hospital sooner, your baby would be alive instead of dead.

The guilt almost drowned me. To this day I struggle with it. I knew I should have gone in, I woke up in the night with a strong feeling that something was wrong, that I should leave for the hospital quickly without bothering to wake anyone up. I wrote it off as a crazy hormonal thing and went back to sleep. At this moment I can still feel Eli's last kick.

We came home. We ate all the food well meaning people brought to our house. I was insanely protective of my two older kids, positive that something else would go wrong and we would lose yet another child. I sat for hours in the nursery we had decorated for Eli, feeling like it was the last place I could remember him, even though he had never been there.

A month after Eli's death, we held a memorial service. Everyone we knew was there, mourning a baby they had never gotten to meet. We held the service outside, in a pavilion overlooking the bay, watching what seemed like a thousand kids playing near the water. It was a beautiful spot and I still remember how much peace I felt that day, listening to our pastors and best friends talk about Eli.

Within a few months, I was dying for a baby. Not to replace Eli at all, but because I wanted something to hope for. I wanted something, someone, to look forward to. A newborn I could bring home with me. It took longer than I thought it should to get the time I finally got a positive pregnancy test, after months of negatives, I could barely believe it and I took about a hundred to be sure.

Because my pregnancy with Eli had been high risk, we followed this new pregnancy very closely. I had weekly ultrasounds following the growth of a tiny speck into a beautiful baby. The pregnancy was truly doctor advised me a of a therapy that could help with my pre-term labor and we began treatment early, so I never had to deal with bedrest or the frequent contractions that had plagued my previous pregnancies. I enjoyed being pregnant for the first time. We did so many things during my pregnancy....went to Disney World with the kids, traveled to New York City again for Eli's first birthday thanks to the generosity of friends, where we spent time in a gorgeous cathedral looking up Eli's name in their Shrine of the Holy Innocents and listening to the kids singing Happy Birthday to Eli over a box of the rumoured best cupcakes in the City.

One morning just days after my baby shower was thrown for me by one of my bests friends, I was standing in the shower when my water broke. Almost an exact repeat of what happened with Eli. We weren't taking any chances. Barely half an hour later, I was in a delivery room hooked up to the monitors, listening to my baby's strong heartbeat. Due to the rupture of my membranes and the history of Eli's death, my doctor wanted to deliver right away even though I was only 34 weeks along. So at 10:30 that night after catching the elimination from So You Think You Can Dance, Seth Broderick was born. After a terrifying moment, he began to cry, which resulted in every person in our overcrowded delivery room crying and laughing at once, including my slightly robotic OB, who had also delivered Eli.

He was 7 pounds 10 ounces, a very high weight for a 34 weeker, and 22 inches long. His lungs were also obviously under developed, and within minutes he was taken to the NICU, where he stayed for two weeks. Every complication he could have gotten he got. He was put on a ventilator to help him breathe and administer surfactant, which caused him to develop a pneumothorax which necessitated a chest tube. His veins kept blowing, so they put an arterial line in through his umbilical cord. He developed severe jaundice. His CBC came back "muddy", so they were afraid he was developing an infection. He was very agitated as they tried to wean him off his pain medication, so he spent several days sedated. Because of all of the risk factors, he was put on a strong antibiotic.

In the first days after Seth was born, he was super responsive to sound. When his dad spoke to him, he cried. When I spoke, he became calm. If the nurses forgot to close the door to his NICU room, he became very agitated until the room was quiet.

He was discharged at two weeks after failing his hearing screening, which the nurses swore was probably due to fluid in his ears from birth. But the seed had been planted. As we settled in at home, I noticed Seth did not startle to his brother banging on drums next to him. Seth did not wake when the kids screamed at one another. I started researching.

His pediatrician did an OAE test in the office to relive my stress and he passed it. I was momentarily relieved, but after a few more days, I told her I was still concerned. Being the angel she is, she immediately scheduled him for a full evaluation with an Audiologist.

As the days leading up to his appointment went by, I only became more convinced he could not hear. Friends said I was being paranoid, that newborns are good sleepers, but this was my fourth baby, and I knew. If Eli's death has taught me anything, it is to trust my maternal instincts. So when the Audiologist looked at me and told me "He is not hearing." I felt a strange mix of sadness and validation. I knew my baby. I knew he couldn't hear me. I wasn't being crazy or paranoid.

Seth was officially diagnosed as profoundly deaf at 4 weeks of age. With my fourth child, when I should have been able to sit back and relax, a parenting pro, I was instead embarking on a completely new journey.

People's reactions have been interesting. I already knew that people tend to have very strange reactions to bad news, having braved quite a few questionable comments after Eli's death, but what floored me was that by far the most popular response after learning about Seth's deafness was "But he is so cute!" Are most deaf babies ugly? Is there a large contingent of aesthetically unappealing deaf infants out there? Is it wrong for a baby with a purported disability to look normal? It is mystifying to me.

The second most common reaction is "I am very sorry." Which, okay...I'm kind of sorry too, but for me...deaf is better than dead, people. By a long shot. I have been on both sides of that fence, and I'll hang out over here if that's okay with you.

The entire history has been written so that you can all understand how much pride and love is in my heart when I introduce my fourth child and third son, Seth. He is a sweet, gorgeous (and cute!) baby, who just happens to be deaf. We've grown pretty attached to him now, and don't want to trade him in. =) Deafness is a part of him now, of who he is. He is our profoundly deaf son. But more than that, he is profoundly, completely Seth.

Seth was just a few months old when we learned he was a candidate for cochlear implant surgery. This surgery, which, by way of an implantable device, makes it possible for him it hear! Implants will give him opportunities I never thought were possible. I believe Seth is perfect as he is. I do not want to "fix" him, or change him. But I also don't want to limit him, and I want to give him everything I can.

Seth was 8 months old when he received bilateral cochlear implants, and we've never looked back, and neither has Seth. He hears extremely well, and, at 11 months of age, his language and listening skills are age appropriate! Aside from his "jet packs" as Ava's friends call them, he is a typical, adorable little boy.

What a blessing this year of his life as been!

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