Sleeping Baby

So let us run the race that is before us and never give up.

Hebrews 12:1

 



This is my sweet baby taking a nap in the sun. She is all ready with her eye patch and arm splints for play when she wakes up. This was taken the week she began weaning off prednisone. Her nurse was just so thrilled she was actually sleeping on her own she took a photo and sent it too me. 

Clara's contagious smile is back and so is her happy personality. It is just amazing what a different baby she is. Our baby is back..and sleeping in her crib!

 

One thing however that has continued to decline is her eating. It has been a struggle for her maintain interest in eating. Nothing like her ravenous appetite she had on steroids. We have had to literally drip the milk down her throat to get her to at least get something down. Bottle feedings can sometimes last an hour.

 

So...Jason and I made the very tearful decision for her get a feeding tube, Gtube surgical placed in her belly. The surgery will be next Tuesday, along with her next broncoscopy. She will have a short stay in the hospital, maybe 2-3 days.

 

The discussion has been on the forefront of our "Clara" conversations for some time. Jason and I have fought it for months, trying to maintain the last normalcy we have with her. Her doctors have been wonderful, working with us with different options, different calories, medications we can try. We all have just really want to give her a shot. However now I think she is just trying to tell us that she can't keep up anymore.

 

She will still be able to eat what she wants and we can just supplement the rest through her tube.

 

The decision came last Tuesday, as I sat on the steps of our home on the phone with someone from Chapel Hill and then at her GI appointment later that day. Such a tearful day for me.

 

I do think once we made the decision there was a sense of peace about it. For so long we have had to focus on weight gain and volume totals for the day, it seemed a relief to be able to focus on something else with her. Like development. It will take so much pressure off her and us.

 

We have thought for so long that a feeding tube would be like going backwards. We have had our fair share of that for a while, so you can understand how important it was for us to try and maintain something...anything normal.

 

However with much thought and  prayer... what I think now is that maybe this is a step forward. A healthier, bigger step forward for our sweet Clara. After all we both just want her to be happy and healthy, no matter what it takes to get there.

 

Today I have felt more anxious about the decision and about next week. I feel unprepared, not ready for the additional stuff, information to learn. It breaks my heart that she has to go through another surgery and another thing put in her. I know to move forward....but really I wish we just didn't have to go through this.

Sometimes running the race and fighting so hard is so exhausting. Everything catches up. Please pray for me with this and for Clara next week.