Look how far we've come

Tuesday, September 23, 2008


The nurse called us back and said that Dr. F thinks we should try increasing the Miralax to 3/4 tsp, up from 1/2 tsp. Her chart indicates that she can safely have 1 tsp every day. I guess we'll try the 3/4 for a while, I'm sure it'll work at first and then I can see her building a tolerance to it and us increasing it again and so on and so forth. I'm about to give up and go back to the Nutramigen on my own, screw it.

Sometimes at night, I just stand and stare at her. I have a hard time laying her down at night and a hard time getting her up in the morning - at night I don't want to let her go and in the mornings I don't want to wake her up, she looks so peaceful just sleeping. Last night she wasn't settling down and I just stood over her crib, petting her hair and running my hands over her face. I'd cradle her cheeks and she'd settle down and look all peaceful and sleepy. I could feel her heartbeat and how quiet it feels, relative to what it was before surgery. I can't help but wonder what's still wrong in there... I try to imagine what it looks like, and if it's working harder that it should be... if it's still enlarged, if her right ventricle is slowly shrinking and becoming blocked. I wonder if she's a ticking time bomb, if one day she's going to turn blue and I'll have to spring into action and race to the hospital. Every day, I examine her, I look at her fingernails, I stare at her lips and temples... "does she look blue to you? no, honey. are you sure? yes, honey, you are crazy... she's fine..." and I know she is, but it's a mother's job to worry.

I treasure these moments, where I stand there and drink her in and know that things could have been so different, I wonder what could have been and how lucky we are. I want to cry for all the mothers who've not been so lucky, whose babies have been through 2 or 3 or 4 surgeries, who've lost their angels and have to find a way to go on. I want to cry for Chloe's mom, and for Elli's mom, and for all they've been through and all they'll never know, and for the blessing of the days they had with their babies here on earth. The pain takes my breath away sometimes.

Thank you to all my fellow "heart moms" and mothers of babies with medical needs, who've been so supportive and know exactly what I'm talking about. We just keep marching on, day by day, and thank our stars for what we've been given!


Marilyn said...

I know exactly how you feel when you talk about watching your baby sleeping. 13 years later and I still go in and watch Kyle sleep and check on him.
I think about Elli's mom daily too. She had been working at the hospital I work at up until Elli's birth. I was there the morning we found out Elli passed away. We called all the nurses working together in a conference room to tell them, and then we prayed as a group with our chaplain. I continue to pray daily for all of us, all mom's with sick children. And I pray for Elli's parents and all parents who have had to let their babies go.

Brian and Cassi Reed said...

While I am honored that you pray and think about Elli and I, dont feel bad, enjoy every moment with your sweet Lily. Of course I miss Elli, but would never wish anything bad on any other babies, and I pray that no parent has to make decisions or feel the way that Brian and I do. We hope that you give Lily one extra kiss each night and stay a little longer to watch her sleep. Knowing that we spent every moment possible with Elli helps to ease our pain. Wishing you all the best and health and happiness for your entire family.

Brian, Cassi and Angel Elli