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How could one month be the longest and shortest period of time at once. When I think back to the day he was born it feels like it happened in the distant past. Something so long ago that memories are already foggy. But then when I look at my son that month feels like an instant. The days spent in the NICU go so incredibly fast - which seems odd considering most of the day is spent just staring at his face and cuddling him close; nothing is “happening” but time still flies by. But the weeks are daunting, they go slowly. The creeping countdown of Tuck’s gestational age and when he might be able to come home feels never ending. 
It’s a waiting game. Waiting for him to develop and mature enough to come off the feeding tube, bottle/breastfeed and not have any spells. We were so close at the beginning of this week. SO CLOSE. He was bottling like a champ - even being able to handle the illustrative “blue” nipple. Preemies usually can’t handle a normal flow nipple, but Tuck was killing it. He was eating and gaining weight and best of all he hadn’t had a spell in 5 days. Spells consist of bradycardia and apnea - irregular heart rate and breathing. He had gone the necessary 5 days without an episode - this was huge! There was talk of scheduling his circumcision and I was getting absolutely giddy about the idea of him coming home. I was mentally picking out his outfit, making plans for a welcome home party, how we would include Charlotte to make her feel special… I was pumped.
Then that evening, after grabbing a quick bite and meeting up with Steve, we stopped in to say good night to Tuck and the night nurse told us that while we were out his heart rate dipped into the 60s. I asked if it would count as a spell. Her face said it all. It had to count since his heart rate was so low. I was upset. I am upset. So, now the calendar resets and we have to wait another 5 spell-free days.  Which wouldn’t be a big deal if everything else hadn’t changed.
Today, all of a sudden and out of nowhere, Tuck’s feeding isn’t going as well. I don’t want to say it’s bad or gotten worse, because he’s just a baby (a baby that should still be in my belly!) but it’s definitely not good. For the last week I’ve avoided nursing so that he could get used to bottle feeding and master it. That and my milk supply isn’t all that great, so I wanted to pump so I could see what I have and what we’re working with. But today the nurse talked me into breastfeeding… the goal for when he comes home is to breastfeed so why not get used to it.  It didn’t go well. Tuck slept through his two feedings which then required the use of his feeding tube. 
I feel like we’re moving backwards. The NP insists that using the tube doesn’t slow down his development, but I don’t get how feeding him through a tube while he sleeps (instead of sucking and practicing that coordination) helps him. Sure, it fills his belly and keeps him growing, but he’s not learning anything… Maybe that’s too much pressure on him and on me.
I just feel so frustrated and out of control. I’m upset. I’m emotional. I just want, more than anything, for him to be home. For things to be normal. 
I know that in time this will all be one of those distant foggy memories, but right now it’s hard. Really hard. 

How could one month be the longest and shortest period of time at once. When I think back to the day he was born it feels like it happened in the distant past. Something so long ago that memories are already foggy. But then when I look at my son that month feels like an instant. The days spent in the NICU go so incredibly fast - which seems odd considering most of the day is spent just staring at his face and cuddling him close; nothing is “happening” but time still flies by. But the weeks are daunting, they go slowly. The creeping countdown of Tuck’s gestational age and when he might be able to come home feels never ending. 

It’s a waiting game. Waiting for him to develop and mature enough to come off the feeding tube, bottle/breastfeed and not have any spells. We were so close at the beginning of this week. SO CLOSE. He was bottling like a champ - even being able to handle the illustrative “blue” nipple. Preemies usually can’t handle a normal flow nipple, but Tuck was killing it. He was eating and gaining weight and best of all he hadn’t had a spell in 5 days. Spells consist of bradycardia and apnea - irregular heart rate and breathing. He had gone the necessary 5 days without an episode - this was huge! There was talk of scheduling his circumcision and I was getting absolutely giddy about the idea of him coming home. I was mentally picking out his outfit, making plans for a welcome home party, how we would include Charlotte to make her feel special… I was pumped.

Then that evening, after grabbing a quick bite and meeting up with Steve, we stopped in to say good night to Tuck and the night nurse told us that while we were out his heart rate dipped into the 60s. I asked if it would count as a spell. Her face said it all. It had to count since his heart rate was so low. I was upset. I am upset. So, now the calendar resets and we have to wait another 5 spell-free days.  Which wouldn’t be a big deal if everything else hadn’t changed.

Today, all of a sudden and out of nowhere, Tuck’s feeding isn’t going as well. I don’t want to say it’s bad or gotten worse, because he’s just a baby (a baby that should still be in my belly!) but it’s definitely not good. For the last week I’ve avoided nursing so that he could get used to bottle feeding and master it. That and my milk supply isn’t all that great, so I wanted to pump so I could see what I have and what we’re working with. But today the nurse talked me into breastfeeding… the goal for when he comes home is to breastfeed so why not get used to it.  It didn’t go well. Tuck slept through his two feedings which then required the use of his feeding tube. 

I feel like we’re moving backwards. The NP insists that using the tube doesn’t slow down his development, but I don’t get how feeding him through a tube while he sleeps (instead of sucking and practicing that coordination) helps him. Sure, it fills his belly and keeps him growing, but he’s not learning anything… Maybe that’s too much pressure on him and on me.

I just feel so frustrated and out of control. I’m upset. I’m emotional. I just want, more than anything, for him to be home. For things to be normal. 

I know that in time this will all be one of those distant foggy memories, but right now it’s hard. Really hard. 

Tagged: preemienicu

  1. tam-ara-kate said: Xo
  2. mediocremommy said: I’m so sorry :(
  3. undercover-mama said: I willing with all my might, that little Tuck meets all of the criteria to get the heck outta there as soon as possible. Love as strength to you all x
  4. lovethiskid posted this