An Unexpected Email

So many things are going on with us right now, I still have so many posts and updates I need to put about our trip. I just started a new job on Monday, the transition is rocky as we expected, but we already see hints that we made the right choice for us. Tucker went back to school Wednesday, Chris went back to work after 12 days off (his longest vacation ever!). I promise I will update on all of that soon! But tonight I am posting about an email I recently received. From Tucker's birth I have felt that he was not sent here for me. I'm sure that is hard for people to understand, and it's hard for me, too. The first song I have on my blog playlist is "I Just Call you Mine" afterall, because I love the line "Everyone calls you amazing, I just call you mine." I would assume that most moms think their babies are for them. They take care of them, love them, know the most about them. Their babies want them the most, cry for them in the middle of the night, etc. Most parents eventually realize that their children play a much bigger part in the world than just as their child. It may take years or decades; Chris and I saw Tucker change people from the first weeks of his life. When we took Tucker home, we thought it was our time. But really, we had nurses at home, therapists at home, many doctor visits and hospital visits, and we continued to learn how many people felt attached to Tucker and saw his success and setbacks as very important to them. Tucker started seeing Dr K last January, and with his Mito diagnosis in July, we once again faced the reality that Tucker was never ours to keep; he had his own plan and issues he would face, we were meant to guide him along. As we attended his routine appointments back in Baton Rouge, we saw how every therapist and specialist took this diagnosis to heart; Tucker was their success story, then their puzzle they couldn't solve, and now a little boy with an uncertain future. While no parent wants their son to spend 9 months in the NICU, years on a ventilator, and get a life-threatening diagnosis, one of the things that has always brought us some comfort is knowing that somehow our story has helped others, even in a small way. One of the hardest things I have ever experienced was Tucker's baptism. It is a very bad memory for me, and something I really felt robbed of as a Catholic mom. Tucker was baptized at exactly 3 weeks old, we hadn't really been allowed to touch him up to this point, and then the priest put holy water on him, which really freaked me out. The rule in the NICU was that only 2 people could be at the bedside at a time, so we didn't invite anyone to the baptism. Mrs. Mia and Mr. Ricky happened to be leaving their visit when the priest showed up (that hospital didnt have its own priest, they had to call him in), so the chaplain invited them in. They said for baptisms they made an exception to the rule. If I had known that, I would have invited the whole family, at least his Godparents and all four grandparents. It felt rushed and just wrong. Now it is harder to look back, I guess because I am not sure how we will ever have First Communion (the kid eats nothing, let alone Communion! not to mention the fact that he will never be able to sit in a Religion class and learn what it means), so at least I would have liked to have his Baptism be done differently. So even though this happened over 4 years ago, it is one of the things that still hurts and I have a hard time thinking about. The reason I am bringing it up is that this week, I began a job at LSU. My former student email account was reactivated, and I opened my account to find tons of emails that had been sent since May 2009 when I finished graduate school. Well, over 99% of the emails were spam, of course. I clicked through many of them to delete them, but I came across one that was an actual email. It was from a NICU nurse who took care of Tucker, she sent it in February of 2010, almost 4 years after Tucker was born. He leaves a big impact everywhere he goes, and I got more proof of that this week. "Long ago I read Tucker's mom's story in the NICU meeting newsletter and it was so sad. Her post on the group site is sad, too, because it seems they had so long with no primary. Please tell them it wasn't for lack of having someone love him. I did, so much. I was not allowed to have a primary for a year after "graduating" from orientation as they want new nurses to be exposed to as many different things as possible, not staying with one baby for a whole year. I actually asked the charge nurse if I could take Tucker when he was brand new and they said no. I was the one who got the water for him to be baptised and was there just on the other side of the screen, praying he would live to go home with the family that loved him so much. My night shifts always included "rounds" to my fav babies. Tucker was one, as was his girlfriend. I just adored his parents. They were so good with him and you could tell he was their life. Sporadically, I could weasel my way into caring for him if Brenda or Lindsay wasn't there. Sometimes if they were busy with another baby and I was nearby I would get to play with him, feed him, get him to chill out and quit sending off the vent. I remember the feeling of panic when I found out the code being called was to his bay. I remember their tons of prescriptions on that last day, finding pharmacies to get the meds, printing out where the millions of doctors had their offices. It was crazy! But please, I want them to know just because he didn't have a primary at first, he wasn't forgotten, unloved, or not special to someone. From the first day I saw his scrawny little body I fell in love with him. I am sure he had other secret admirers as well. I've always wanted to tell her but didn't know how to contact her. Thank you!!" I just thought, "wow", on several of the hardest days of my life, this nurse was there, watching our family's love for our son, praying for Tucker and also loving him, and being part of our story. To explain this email a little, babies in the NICU usually have primary nurses, meaning one nurse who coordinates the baby's care, and everytime they are at work, they take care of that baby. This nurse is kind of the boss of that baby, so what she suggests, the other nurses are supposed to listen to. Most babies get a primary at birth or within 2-3 days; Tucker didn't get one for about 8 weeks. A primary nurse would have made sure we knew there was an exception to the rule for baptisms, and made sure that we got to hold and touch Tucker as much as possible (we didn't hold Tucker for 7 weeks, which is 7 weeks after we had started asking and 3 weeks later than we could have!!). His first primary nurse Lindsay had been on leave when Tucker was born; as soon as she met him, she picked him up as a primary. His night primary Brenda had another primary baby; once he graduated she picked Tucker up at night. I could never explain what a difference these two women made in Tucker's care; and it really hurt to know that Tucker had gone so long without a primary when I later learned that the basic rule was for all babies to have primaries within 2 days (I actually attended a meeting where they had a graph...most babies were 2-3 days, and there was this huge outlier baby who didn't get a primary for weeks, it turned out it was Tucker!!) So they actually held meetings about this, and Tucker's primary nurses spoke at it, and I really pray that since then no baby or family has gone that long without a primary nurse. The code she spoke of happened on December 22, 2006. Tucker was on the ventilator for all of his first year of life (except for about three weeks, then he went back on). Codes are pretty common in the NICU, but Tucker did not have one earlier because he was on so much support that worked to keep him alive (there were many times when nurses worked all night to keep him alive-but they never got to the point of calling a code until that night). When Tucker had his code, he had his trach for over 3 months, and he was on the highest possible vent support; yet he still stopped breathing. We found out two days later that his trachea had an odd pocket shape, so the pulmonologist prescribed a longer trach and Tucker started breathing much better. That was one of the scariest days of my life. It felt like the whole NICU was affected that day; apparently, they were. I also remember Tucker's homecoming day. It seemed like the whole staff came by to say their good-byes and wish us well. We knew that there was a good chance that Tucker would be back to the NICU or PICU for breathing issues, the nurses had seen many cases of kids going home with trachs only to come back in worse shape. So I just wanted to share this email; it serves as a reminder that in that hell of a place, the NICU, angels were there, sharing our pain. As I fight feelings now of not wanting Tucker to be on the path he is on, I look back and realize how many people he has touched, and how his life has already made such a difference. It makes being his mom and walking this path with him just a little easier.

Prematurity Awareness Month

I have been a bloghog lately! I just have so much to say lately, I guess. November is Prematurity Awareness Month. I could go on and on about Prematurity and how it affects our lives every day....how it affects so many lives every year. 1 in 8 babies in America are born too soon....1 in 8!! That just astounded me when I learned that....when Chris and I talked to the NICU dr who told us our son was going to be born at 27 weeks, I thought "surely no one has babies that early," but we are no where near alone... Tucker's birth and NICU story is long and complicated...and also miraculous and a testament to the doctors and nurses, family members and friends, and our faith in God... but for now I'll just touch on some of the things that Prematurity took from us...things that still haunt me to this day....things that I will never truly "get over" as moms never "get over" the birth of their child, even decades later.... -13 weeks of pregnancy-13 weeks of doctors' appointments, crazy cravings and symptoms, watching my belly grow and knowing that my little one was safe inside...13 weeks of ultrasounds, maternity clothes, baby shopping, and people asking me "when are you due?" For those 13 weeks, no one outside of the NICU could tell I was a new mom. There were no outward signs that I had a new baby. I stayed inpatient for 5 days after Tucker's birth, and I lost the "baby" weight by the time Tucker was one week old. I enjoyed my baby shower, but by then Tucker was 8 weeks old. There was no guessing how much my baby would weigh or measuring my tummy for any games...not that I would have enjoyed that in the first place! Instead of spending a few hours in labor and a few days in the hospital with a newborn, we spent 4 days in Labor & Delivery and 5 days in the postpartum area. For those 4 days, Chris and I heard babies being delivered all around us, loud crying babies...we knew we weren't going to have that kind of delivery....After Tucker was born, they took him away immediately....we spent 5 more days listening to crying babies with their families all around us, while ours fought for his life somewhere else in the hospital. On that 5th day, we left the hospital without our son. I was wheeled out of the place empty-handed...it was like some cruel joke that I didn't get...We were supposed to be thankful that Tucker was at least alive, that he had the chance to make it and one day be okay, but it was just the most unnatural feeling to leave the hospital and go home to an empty nursery. Chris and I made that same trip over and over during the next 246 days...If we knew at the beginning how long it was going to be, I don't think we could have ever started... The doctors explained that we had at least 13 weeks of the NICU ahead of us....and each day in the NICU can feel like an eternity....that kind of information can make you numb, just make you want to crawl into bed and not come out until your old due date...but you are parents now, and that is not an option. So you watch your child fight a fight they were never supposed to...a fight that too many babies lose...and you feel powerless to touch them, talk to them, or sometimes even look at them, since your voice and the lights often are too much for their little bodies to handle. (Chris and I didn't even hold Tucker for 7 weeks, a subject that could fill up many blog posts.) You throw out the "What to Expect When You're Expecting" books and buy new books....learn new terms, like ROP, PDA, BPD, and celebrate every little success. The doctors tell you that many preemies show no signs of their early births by age 2 or 4, but many other preemies are affected for life...you hope and pray that your baby is one of the lucky ones, one of the strong ones whom no one would ever guess started life like this. Honestly, we are still adjusting to life as parents of a preemie. So many dreams and plans that we had are still being changed and moved around to fit our reality. I hope that sharing Tucker's story makes others aware of Prematurity and its affects, and that one day the statistics look much better for all babies.