Tuesday, May 15, 2007


Bear with me... a little post-therapy.

I think I'm a little raw today. Don't know if it's because she seems to be a little puffy above her neck incision, a funny click as she swallows while binking or maybe the two times that her oxygen dipped low enough to get her Pulse-Ox monitor beeping as she fell asleep for her nap just now. Maybe it was that I experienced changing her Gastrostomy tube bandaging this afternoon for the first time myself.

I can do this, the G-tube thingy. But I won't kid you, nightmarish is the term that I have for it in my heart. I get to party old-school-nightmare-style with the Pearl girl twice a day for the next two weeks till the G-tube site heals. Then about three times a week, or as necessary. Hopefully I will get to a place where it does not sear holes in my heart every time we do it.

Don't get me wrong. I'm going to be very good at it. I am already careful, firm and thorough. I pretend that I am a nurse and that she is my patient, not my screaming babygirl.

And I just keep thinking that it takes a very special breed of human to work in a place like this. A special strength to do what must be done.

I feel myself already starting to bend and change with this experience. I am open to what I must become to survive this. We're gonna make it, but it hurts.

I went into the giftshop just now to see if I could find some little girl rubberbands or hair-doodads. They didn't, but as I looked at all the carefully displayed items that they had, I noticed that it was all so attractive. Enticing and useful things like funny, brightly colored kids socks that come by packs of three socks; all three differently patterned and mismatched. Cute lipglosses. Sweet little toys for babies, and lovely hand creams for moms next to children's books and funky wristwatches. I thought about getting some lipglosses to give to Birdie and LaLa the next time they came to visit. I started crying and couldn't stop. I paid my dollar for the small pair of nail clippers I had in my hand and fled that little oasis of cheer. No one commented on the tears, most people have a way of looking to the side to give those who are crying a little bit of privacy. I am grateful for that.

I am starting to understand an interesting array of things that I never before cared to even think about. And as much as it galls me to expose myself in this way, it has to be done or I will fold in on myself till I can't go anymore.

I want to thank you for your thoughts and prayers. I read it in your comments, and know it from the knowledge I have of you and your lives from your blogs and past conversations. You buoy me up. Thank You.


Brittany said...


You should really call and talk to my Mom. Even if it's just to vent! She is awesome with the whole "hospital and Doctor" stuff. I am so sorry that you have to go thru this. I remember when Ky was in NICU--it is so HARD and frusterating, especially when you just want to take BABY HOME!!! Let me know if I can do anything


Jennifer said...

I am wishing you a speedy and easy recovery for your little Pearl.

Jo said...

Awww hon. I am sorry it is so hard right now. It gets better, I promose, but geez, ya have to get through all this first. Not that I have any gtube to deal with. But it was that way with the other stuff we have had to deal with. Really truly, I will come and cheer you up if you want. Lakotajo2 at msn dot com.

Fantastagirl said...

I wish you were just down the road from me, I'd be there in a second.

Hang in there - it's okay, and just remember - it's all new to you - ASK for assistance, ask questions, and ask for help.

sari said...

OH MY GOSH. I have been away from here for about a week and am SHOCKED at all that's gone on!

I'm so thankful and happy that Pearl has come through this all right, and that they doctors have found the cause of all her health problems.

I'm praying for strength for you so that you can take care of what needs to be done. You can do it, I know you can, but my heart just hurts to hear what you're going through. There's nothing worse than your child hurting.

I'm also sending prayers for the other mothers and their children you spoke of. I just have tears in my eyes.

I'm sorry it's been a week since I've visited. I promise I'll keep you all in my prayers. I agree with Fantastagirl, I wish I lived near to help.

Mama D said...


I am very contemplative as I write this. Please don't think that the following is meant to lessen what you are going through IN ANY WAY. What I mean to do is encourage you further by telling you what people can do and get through...

My coworkers son had major heart surgery when he was born. Afterward she needed to change a tube that she fed through his little nose and down into his tummy. She had to listen to his tummy with a stethoscope while pushing air into the tube with a syringe afterwards to be sure that the tube was indeed in his stomach. She also needed to give him two blood thinning needles a day. Six months later he needed another surgery to deal with some scar tissue that was causing complications. NOW he is a very healthy nearly 3 year old boy. He and his mommy had a hard road but they got through it.

And I know you will too. I love what you said about bending and changing. Isn't it crazy what God challenges us with. Stuff we never think we can handle.

So much love to you and your whole family. Are you tired of hearing that yet? Hope not.


the Dread Pirate Rackham said...

I'm getting flashbacks to when we first brought the girls home - they were tiny. E was 4lb 9 oz, S was 3lb 14 oz. I could not believe they would entrust these two tiny people to our care. They sent them home with oxygen, and I about died. What was I supposed to do with that? What does it mean when they test your kid's oxygen saturation levels in when they're lying in the car seats so that they can be sure that they baby will survive the journey home?

Oh my, just trust me when I say that hospitals are designed to freak you out. You, me, everybody.

Humans are so durable. Take a step back from your baby and have a real good look at her - and you will see a kid who is strong, and getting healthy, and getting better every day. She will thrive.

Meredith said...

You are doing great Bon - seriously, you are a superstar mom. I can't imagine going through what you are going through with as much strength and determination as you have shown.

When bad things happen, or moreover, when there is a situation to overcome, I try to put myself years away and think "someday this will all be a memory." Two weeks with the G tube will suck but then it will just be a memory.

Hang in there!

Jenn said...

I just wanted to give my encouragement as well. Sometimes I work at a Children's hospital and it is so difficult. But I am always amazed at children's strength and resilience. You are being a great mom, keep the strength and good luck.


Pendullum said...

You are th strongest woman alive... You are the mother of Pearl.. and you have to be strong as you daughter is, is such a powerful strong being...
She has endured so much... and you and your husband have been behind her all the way...
2 weeks andthen it will heal... 14 days... and each day it comes a bit closer...
I am thinkingof you and sending only the most encouraging healing thoughts you way... laced with tears... for how brave you all have been...

momofalltrades said...

*hug* *hug* and *hug* I'm so glad Pearly girl is finally on her way to being all better. What a great mommy you are to help her through. Isn't it just a teensy bit unfair that the things that help them the most are often times the things that are the hardest to do? Hang in there. Things are definately on their way up in the house of Chaos.

Suburban Gorgon said...

Oh, Bon. I've been totally out of the loop of late, and have just been catching up with what's going on with Pearl! Bless your heart. That kid is a tough little girl, isn't she? I can't imagine what you've been through with this - I am so glad that she's on the mend. I will be thinking about you.