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Thursday, August 25, 2011

Two Rollercoasters

Sent in by Nicole 8/25/2011

I went to write an entry into the blog two weeks ago and after I read it, I deleted it.  It was so sad, so choked up, so not me.  I had met with Wrenn’s nurse that day and it was a ‘when it happens’ conversation.  Even though Wrenn’s doing great today, I have been mentally prepared by the transplant team that it won’t last forever and that nobody knows her timing.  I think about it every day.  Usually after I laugh really hard I get quiet and shed a tear or two.  This is my reality; Jekyll and Hyde.  Psychologically I live on two rollercoasters and one brings me enormous joy but the other brings me such sadness I want to die. 

With those thoughts in mind, I realize that when people look ‘in’ they only see the good news.  The strides she’s taking, the place our family is at today and where we’ve been.  They don’t think about where we will eventually go.  I’m usually TOLD questions rather than asked, like “Tanner will be going to school, right?” My reply: “I can’t answer that today.  I don’t know where we’ll all be in 3 years.  I don’t know where Wrenn’s health will be at that moment.  If Tanner goes and gets her sick every week, which could lead to rejection, then no.  He will be homeschooled most likely, but I can’t say for sure.”  It’s a conversation every transplant family deals with, and each family and deals with it differently.  If we’re living in a super small town by then it could make a difference, but then again it might not.  What I realize is that my answers will be uncertain at times.  I don’t know if he will be able to attend every family function, or every birthday party, or always HAVE a birthday party.  I am aware now that I will be heavily judged regarding these decisions.  I am ready to answer for our family whether people understand our decisions or not.  We are the ones who have to live with our decisions and the causes and effects of how they play out.  It’s a really tough place to be, but it is a place we accepted upon transplant and we agreed as a family to change our lives for Wrenn.  We understand this commitment but I’m realizing most people will never understand what it truly means.   

(Editor's Note - I totally understand Nicole, and I will never question your decisions!!  -- Lisa)

I hate that summer is ending.  Wrenn got her first round flu shot yesterday at the pediatrician’s office.  It means going back into hibernation in a way.  When the weather turns cold it means she’ll be wearing a mask indoors and probably not eating out when we’re forced to do so inside a building.  We try to live inside the bubble but with one foot out.  The foot is barely out during the winter months because colds are not kind to immune-suppressed folks. 

Wrenn had a bronc back in December and that showed NO rejection.  The one in March was inconclusive, as was the one in June.  July's results showed what we all had hoped for -- PERFECT - NO rejection and she had no real complications.  Having rejection in the first year of transplant as a baby is odd and since she had level 2 rejection, this keeps the transplant team on their toes.  I think everybody needed to make sure she was really doing as well as she looked.  I have to say, peace of mind is nice until the next three months roll around.  I do start preparing myself for the next bronc just days beforehand.  The larger scope is not used much on babies because it takes up 60% of their airway during the procedure. However, Wrenn did great, even though they clipped a vein and she had internal bleeding, she was suctioned and they went back in and continued the biopsy.  Seeing her coughing up blood was scary but the doctors and nurses said she’d be fine at home; and she was! My little trooper!  Something worth mentioning; it took three nurses to get her to lay down at put her to sleep for the procedure.  They said she’s a tough cookie and certainly puts up a fight!

There is so much to say about my little feisty girl.  She is walking like a champ! She is babbling and she is a pro at signing. She definitely WANTS to communicate.  When she was in the hospital, not a day went by where she didn’t listen to music.  I guess that worked out because she loves when anybody sings and it immediately calms her down.  She adores her little bunny and puppy and can’t fall asleep without hugging them, petting them and rubbing them on her face and mouth. It is a soother and she had them in the NICUs for months.  Wrenn loves to eat any type of Italian food.  She doesn’t like sweets very much but eats ALL the time.  She is finally asking for a sippy cup and doing great.  She’s still not able to drink enough to get all the calories she needs, but she loves water and now sucks, which is HUGE.  After I put an outfit on she taps her head, waiting for me to place a little bow on top.  She takes it off and looks at me like, “Mom, I want to put it on my own head, OK?”  I am amazed every day how much she has learned in her short time with us since December.  She dances to music, repeats what we say, fights for toys with Tanner and has proven without a doubt, she’s here to stay and WANTS to see the world. She is just like Tanner, FEARLESS!  She’s a climber.  She likes to stand on chairs.  She thinks it’s cute to do daredevil things and even if she falls, she gets up and does it again.  I have to keep the chairs hidden away in the other room (which isn’t easy in a two bedroom apartment).  She loves to ride the electric jeep with or without Tanner.  The photos and videos of them together are adorable.  They are a heck of a team and they basically give me heart attacks every day as I try keeping up with them. 

Mostly, I’m shocked at how happy Wrenn is.  She’s just approaching the world as if it’s hers for the taking.  She wakes up happy, plays happy and then fights going to sleep.  After all, she slept for nearly 9 straight months.  She’s raring to go! 

She has speech therapy twice a month, PT twice a month and OT once a week.  She’s a busy girl and excels. At our last clinic appointment, the day before the bronc in July, I held Wrenn on the table as Dr. Michaelson examined her.  I looked at Donna and said, “Is this normal?”  Wrenn was trying to jump, walk off the table, clapping, laughing, babbling, making goofy faces and just being a cute, normal and mischievous.  I got the impression from their response to my question that Wrenn is a rarety.  She is full of life, has done very well developmentally and that we are truly witnessing a miracle each day. 

Tanner is still adjusting to a sibling.  It’s not easy and we try to give him enough attention but sometimes it doesn’t seem like we’re doing enough.  What I have noticed is that everybody has been effected from the last 16 months.  For all of us time stood still in that one year.  Tanner was just over two and to be honest, I can’t remember much of his development from 2-3.  For me, turning 40 was a blur as well.  Life stopped and is finally picking back up.  Tanner was so good during those months we needed him to be an excellent little boy but now I’m seeing more of the terrible 3’s and the effects of everything he’s been through.  In a sense, we are chasing our tails right now. I am hoping by January we’re all caught up.  My pediatrician agreed that things like his pacifier habit and potty training are not important with all we’ve been through.  Right now he just needs attention and bonding time with Wrenn.  Everything else is just a chore and our family still needs down time. 

We took a quick surprise trip back home to Virginia to see our families.  During our visit I went to my parents’ church, St. Michaels, where Tanner was baptized and where many people have prayed for our family in the last two years.  We walked in and my mom announced that this was Baby Wrenn, the miracle baby that everybody had heard of and prayed for, for so long.  I turned around and had tears in my eyes, so excited for them to see her in the flesh.  I wanted to say ‘thank you’ but knew I’d lose it past that.  I think every day that I will be strong in telling her story without becoming so emotional but I’ve decided to accept that I probably never will. To that congregation, your prayers and support for our family has been amazing! Thank you!

I have met parents who were waiting on transplant and their babies did not make it.  It’s so hard to see them go through the wait and then the loss.  We could have been in their shoes very easily.  We were so close on many days and for them my heart breaks.  I hope they continue to heal and our prayers are with them!

Wrenn’s next bronc is scheduled for October 10th.  Until then, thank you for your continued prayers, emails and stories you have shared with our extended online family.  You’ll never know how much this blog has meant to me in our daily lives.



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