Monday, January 25, 2016

Living on the Edge

Avelyn has been struggling with withdrawals all weekend and continues to today. I see the symptoms on a daily basis at work but seeing each in my month old baby strikes a nerve. It's sad to watch someone so little go through withdrawals-to see her heart race; the sweat bead down her face; her breaths so fast and shallow; and the twitching of her little limbs. She's restless and irritable whenever her detoxing meds aren't covering her symptoms. Due to her anantomy and physiology her blood pressure naturally runs quite low-often times too low. This complicates what can be given for withdrawals because all the medications cause decreased blood pressure or hypotension to some extent. To combat the impact of the detoxing medication she has gotten blood, fluid and increased dosages of epinephrine. For now it seems to be working. 
Friday was a rough detoxing day as well as in general for Avie. Her perfusion to her intestines wasn't the best throughout the day due to the withdrawals. That evening she had a grossly bloody stool, which is indictive of not processing her feeds well and sets her up on the edge for future surgery. 
If she can't process feeds and grow she needs her unifocalization surgery sooner rather than later. Over the weekend the attending was suggesting the blood in her stool again would likely be the final straw that sent her to surgery. However new days bring new attendings a with new treatment plans and ideas. The current attending just started her back on feeds after another 48 hour NEC rule out. We still haven't heard from Avelyn's surgeon yet and may not until Thursday, unless something significant comes up. In the mean time we are trying to keep Avie as comfortable and relaxed as possible-which isn't easy given she's going through withdrawals. If she gets upset her body will naturally shunt more blood to her lungs and not her brain or periphery. Meaning she's at risk for decreased gut purfusion and NEC as well as another stroke. 
It's not an easy line to walk. We want her to grow and be as large as possible to give her the best chance at a successful repair but we risk her having another lactic acidosis episode, NEC, or stroke with each day we wait. Needless to say life is stressful. I doubt any parents have ever been more attuned to their child's cries as we are given these circumstances. 
To make matters worse I am nearing the end of my leave at work. Currently I am able to calm her more quickly and easier than anyone else. I guess all the time she spent in utero she became accoustumed to my voice and lack of rhymic movement-poor child lol. But anyway considering the potential consequences of her not settling-I rarely leave her room. It's often just not worth the risk. Granted some days, when she's doing quite well I'll venture out for a couple hours but even then it's never any longer. I can't even begin to consider going back to work now and being 5 hours away from her. Hopefully she'll make amazing headway in the coming weeks. In the mean time we'll be looking into other options. 
Sean and I are blessed that we've be able to be with her as long as we have. Many of these kids often have no one at their bedside. The nurses here are wonderful but can't attend to every cry every time. It hurts my heart to know any cries go unanswered but especially those of such sweet fragile little babies. 

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