I have waited a few days to post this as it took me a few days to not become completely overwhelmed with emotion when thinking about it. Call it pregnancy hormones. Call it emotional exhaustion. Call it a mama's heart sinking a little in the wake of news less than positive regarding her baby. Call it whatever you will, but discouraging news is hard when it pertains to your kids. IT JUST IS! So, what am I referring to exactly?
After an encouraging visit at the ENT doctor, D's therapist thought it safe to move forward with trialing a faster flow nipple. This would put him on a level 2 nipple that is typically used for 3 to 6 months of age infants. He is over 7 months, thus we would be much closer to where we needed to be. The trial would allow the therapist to see if D was still able to pace himself adequately when flow increased. This would also speak to how his coordination has or has not improved overall. If things worked well with the trial, we would resume feedings with a level 1 nipple, but we would begin to thin the liquids he ingested. Once we would were able to have D swallow thin liquids (meaning water consistency, no thickening agents), we would proceed to a faster flow nipple.
Well, as you may have guessed already, the trial did not go smoothly. While D never showed signs of aspiration (which is a praise), he was not able to manage the liquids in his mouth safely AND his coordination, for lack of a better phrase, "went out the window" relative to his ability when on a slower flow nipple. Obviously that was hard to hear... very hard to hear.
What exactly does this mean? For now it means we do more of the same. We continue to monitor his pacing (amount of sucks to every breath and swallow). We continue to work on "pharyngeal awareness" (D's ability to manipulate what's in his mouth due to sensories being properly triggered), and we work on his overall strength in all areas affected by swallowing - starting from entering the mouth at his lips down to muscles in his torso.
So, while I was discouraged, I have to also remember how far we have come... and that is encouraging! Patience has not always been a strong suit (thank you, Honey, for that, hahaha), but I cannot help but be anything but grateful for how far God has brought us. I keep a picture of our little man on my screen saver of my phone of days when he had an NG tube. It's humbling to think of the things the Lord has done in this sweet little boy's body. My heart soars with gratitude and dances to the tune of praises. It's easy to get lost in how normal things look, but at this point, more of his little life has been spent with an NG tube than without it. And I elate in those tube free days. May God receive the glory for them. May any discouragement I have due to a poor trial run be overwhelmed with remembering His goodness and faithfulness.
After an encouraging visit at the ENT doctor, D's therapist thought it safe to move forward with trialing a faster flow nipple. This would put him on a level 2 nipple that is typically used for 3 to 6 months of age infants. He is over 7 months, thus we would be much closer to where we needed to be. The trial would allow the therapist to see if D was still able to pace himself adequately when flow increased. This would also speak to how his coordination has or has not improved overall. If things worked well with the trial, we would resume feedings with a level 1 nipple, but we would begin to thin the liquids he ingested. Once we would were able to have D swallow thin liquids (meaning water consistency, no thickening agents), we would proceed to a faster flow nipple.
Well, as you may have guessed already, the trial did not go smoothly. While D never showed signs of aspiration (which is a praise), he was not able to manage the liquids in his mouth safely AND his coordination, for lack of a better phrase, "went out the window" relative to his ability when on a slower flow nipple. Obviously that was hard to hear... very hard to hear.
What exactly does this mean? For now it means we do more of the same. We continue to monitor his pacing (amount of sucks to every breath and swallow). We continue to work on "pharyngeal awareness" (D's ability to manipulate what's in his mouth due to sensories being properly triggered), and we work on his overall strength in all areas affected by swallowing - starting from entering the mouth at his lips down to muscles in his torso.
So, while I was discouraged, I have to also remember how far we have come... and that is encouraging! Patience has not always been a strong suit (thank you, Honey, for that, hahaha), but I cannot help but be anything but grateful for how far God has brought us. I keep a picture of our little man on my screen saver of my phone of days when he had an NG tube. It's humbling to think of the things the Lord has done in this sweet little boy's body. My heart soars with gratitude and dances to the tune of praises. It's easy to get lost in how normal things look, but at this point, more of his little life has been spent with an NG tube than without it. And I elate in those tube free days. May God receive the glory for them. May any discouragement I have due to a poor trial run be overwhelmed with remembering His goodness and faithfulness.
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