Friday, April 20, 2012

Show Us Your Life - T-13, Our Miracle Baby

I'm a little behind the 8 ball the last few weeks. I have been neglecting my blog...again. But today is different. I get the chance to spill about my little miracle Philip Cole, so of course I am on it!
Kelly from Kelly's Korner is hosting Show us Your Life - Moms who have lost children. Of course, this is the group no one ever wants to join. Losing a child is the most devestating thing that has ever happened to me and here is my (our) story.

About half way through my first pregnancy (October 2006) I got a call from my doctor. That in itself was weird, because usually a nurse would call if the office needed something. My doctor told me that he needed me to come in the very next day for a sonogram. My blood test from my appt. earlier that week came back flagged. He made the sono appt for me and we hung up. I was pretty freaked out and left the office early and cried the whole way home.

Of course, now (over 5 years later) I can readily admit that I already knew something was wrong. At the time I chalked it up to “this is my first pregnancy.” But, now, I can say now I knew all along…from the day I took the home pregnancy test.

So, the next day my husband and I went together for the sonogram. The technician was amazing and sweet, but it only took a few minutes for her to see that the blood test was not a false positive. My doctor came in and asked that we go to a specialist. The specialist would have a better quality sonogram machine and could tell us more about what might be wrong with the baby. The only part of that day that was good was finding out the sex of our munchkin. We were having a boy…exactly what we had hoped for.

The very next week we went to a specialist and then to another specialist the next week. In the end, we were not given a diagnosis. We were told it could be Down’s syndrome or something else, they just wouldn’t know without an amnio.

For us, termination would never be an option. For us, life and death is only decided by God. So, having the amnio was a risk I wasn’t sure I wanted to take. However, having a diagnosis would give us more information about our son and allow us to find the appropriate doctors to help him. I have a cousin who’s 1st daughter had been very ill when she was born. There was no indication of her illness before birth, so my cousin and her husband and their doctors were caught completely off-guard and unprepared. Their little girl only lived for 4 months. I called my cousin for support and advice. Was the amnio worth the risk? After speaking to her, we decided it was. Having all the information, including a diagnosis, would help us provide the best medical support to our son.

I had the amnio at 8am on a Wednesday morning. To be honest, my husband and I both thought he probably had Down’s Syndrome. I have a close friend from High School with Down’s and she is amazing. She is 34 and has a job and is just the sweetest girl. She graduated from high school with me and she is my best friend’s cousin, so I have watched her grow up. Of course, she still lives at home and I’m sure she has had some medical challenges. But, she is what I was basing my fears on…and having a child similar to her was not scary for me at all.

We were expecting to have to wait 72 hours for the results of the amnio, but my specialist had put in a rush at the lab and we got the call at 5pm the very next day. Philip Cole did not have Down’s Syndrome. He was diagnosed with Patau’s Syndrome, or Trisomy 13. There are several different version of Trisomy 13 and Philip had the most severe, Full Trisomy 13. I hung-up the phone and melted onto the floor of my kitchen. My husband got home a little while later and after an hour of tears we googled. We found the website on our first search. This site changed our outlook. I signed up for the online support group and met some amazing families who gave us the support we desperately needed then. In fact, I am still in contact with several of the moms I met through that site. We shared Philip’s story on the site, the link is in the side-bar on the right.

After many doctors appt. we decided that the best course of action (or non-action) was Comfort Care. Philip’s condition revolved around a brain that was just not created properly and in the end would most likely not be able to lead the functions of his body. We wanted to make sure that the time we had with him was sent snuggling with us and our family, and not in a NICU surrounded by strangers. Every family must choose what is right for them and this was the right choice for us based on the medical information we received and many, many prayers.
Despite our doctors expectations, Philip survived the pregnancy and after a long induction was born via cesarean at 2:08am on March 7, 2007. He was 8 pounds 13 ounces and 21 inches long. He breathed on his own. He peed, he pooped, he burped. Other than his little feeding tube that ran into the side of his mouth (his cleft lip and palette prevented him from sucking on a bottle…even the specialty bottles didn’t seem to work for him) and his IV on his hand…he had no other medical intervention.

Our entire family came to the hospital and showered our precious boy with love. He was such a sweetie and only cried when they stuck him for his PKU (I can’t blame him for that one…in fact I didn’t know why they even had to take that test at all). On our second day in the hospital, Philip’s temperature dropped and we were told that he would not be with us for much longer. He lived for 32 hours and 58 minutes outside the womb and died in my arms.
The days after he died were a mix of emotion. Times when I cried for hours and never felt hungry. Other times where my family would make me laugh and my scar would hurt. One of the nurses told me about using cabbage leaves in my bra to keep my from getting engorged. So, in the middle of the grief and the funeral planning I was trudging around with cabbage in my bra. It just doesn’t get more real than that. Sometimes I just had to let go of the grief and laugh at the spectacle of it all. When calling around looking for a “Youth-sized casket” (as Philip was too big for a baby one), my aunt got into a bit of a tiff with a funeral director who insisted that selling a “used” casket was illegal. They did get it sorted out, but that definitely became one of those ‘funny despite the grief’ stories.

The Saturday after Philip died we celebrated his short life with a lovely service at our church. We were completely over-whelmed with the amount of people that came to support us.

Through this journey with Philip Cole I never hated God or turned away. You always hear stories of other people and their challenges and you think “If that were me, I would just die. I couldn’t take that kind of pain.” There were days were I did feel completely overcome with pain and grief…but on those days especially I leaned on Jesus. There were other days where I did smile and things felt (sort of) normal again. I will never be the person I was before, but because of my little miracle Philip, I am a much better person now. A little over a year after Philip went to be with Jesus, the good Lord blessed us with our second little miracle, Cristian.

Cristian is now a very healthy almost 4 year old. He is super smart and very sweet and knows exactly how to make me laugh and push my buttons. I am a better mom to him because of the lessons I learned from Philip. I am a more patient mom and a more loving mom. I cover him with kisses several times a day. Cristian knows his big brother is in Heaven with Jesus. He doesn’t quite get it at this point, but it is important to me that he knows his full family.

I am a single mom now, co-parenting Cristian with his and Philip’s dad. Their dad and I are very close friends and are committed to maintaining a grounded family unit even though we are no longer married.

Losing a child is devastating. Hearing other families stories still puts me in tears every time. However, I would not trade my experience with Philip Cole for anything (unless that anything was a healthy Philip Cole, of course). His short life brought so much to our family. He gave me strength in God that I didn’t know I had. I was always a believer, but leaning on God so completely was something I had never done before. That leaning was the only reason I came away from it with a positive outlook. Don’t get me wrong, I still miss him with all my heart, I still cry in grief sometimes and I would give anything… But, I cannot change what has happened, I can only move forward. Life keeps going…which is completely frustrating and annoying when you first lose someone you love. How can people keep moving forward?? You just want the world to stop. But, it doesn’t. And, with time and faith, I have found that wounds do heal (mostly) and you can find the positive if you search your heart and you pray a lot.