Yesterday was Maggie's six month birthday. We did nothing in particular to celebrate, which I felt bad about, but we did make it through another day. It sure doesn't seem like it's been six months since she was born. And she sure doesn't look like a six month old!
Anyways, we've been through seven of the ten appointments we will have this week and all are still fighting colds. I say this not to invite pity but to explain why I might not have responded to an email or text or phone call. I love getting all of them but I really am so brain dead that I just know I am not being a good friend right now to those who have been so good to me. And I am so sorry for that. One day, I keep telling myself, I will be able to serve others like they have served me.
To sum up, Maggie is listed right now in her chart as "failure to thrive." When the therapist read that to me today I was taken aback because no one has said that to me yet. To me she is thriving, considering where she came from. But compared to all other standards I guess she is not. And even though I know it is not my fault, as a mother to hear that of course all your "what ifs" come into play. The good news is that it's not that Maggie can't eat or doesn't know how to eat. She is just choosing not to, and most likely because something is hurting or bothering her. Over the past two months of us trying to get her to eat when she didn't want to, she has slowly developed an aversion to eating. On top of that, she is a very alert baby and anything can distract her (today the therapist put a cloth over her eyes to see if that would help her eat). NICU babies commonly develop sensory issues - they are touched before their skin is supposed to be touched, they listen to loud sounds and beeping and alarms way before their ears are supposed to hear - and so it is no surprise that Maggie has some sensory issues as well.
So in the coming weeks we will have to make some big decisions about how to best treat this problem. Some options are in-patient hospital stay, out patient intensive treatment with a feeding tube, or some other less drastic options if in the next few weeks she starts to eat and grow. We have three different doctors weighing in and a feeding therapist, which is good, but I think the ultimate decision falls on us. Praying for clarity and wisdom as we move forward because we want to do the best thing for Mags in the long run.
On another front, Mary Lawrence is still having pain so we are having another X ray tomorrow. Hopefully it won't be as scary for her. I just keep praying that these girls will feel better soon.
I have been told several times over the past few days that this stage we are in is only temporary and won't last forever. Although it doesn't seem like it right now, I know that or at least have that hope. And this blog is supposed to be about hope during trials so I will continue to have hope that the Lord God is working this all out for our good. Maybe I should have named Maggie "Hope" instead:)
Subscribe to:
Post Comments (Atom)
For what it's worth, Lee, my older sister was diagnosed failure to thrive when she was 3 months old. My mom cried and cried over it. My sister went on to graduate from Stanford University where she was voted the MVP in the Ultimate Frisbee National Championships. She then went to Vandy Med School where she was student body pres and received the Founder's Medal (#1 in her class). She did her residency at Harvard and is now a pediatric cardiology fellow at Stanford. To say the least, the "failure to thrive" baby in our family certainly has excelled academically and athletically. Sure, her situation was probably very different than Maggie's, but suffice it to say, things can turn out very different than expected!
ReplyDelete