3 Weeks Adjusted. <so weird>
17 Weeks old.
8 lbs 4 oz.
3740 Grams.
Boy oh boy, if you would’ve told me in those first few week that the 2nd HARDEST weeks would be those just before we were to be discharged, I would have told you you’re crazy. We’ve been through some hellish stuff in here, NICU life is a serious roller coaster but damn, these past few weeks are really putting us through the ringer. You’re so close, dude! SO SO close. You’re basically off monitors, we have no respiratory concerns for you but dude, you gotta learn to eat! You’re taking roughly 45% of your feedings through bottle, the rest through your NG tube (nasogastric intubation). We need you to be at 100% before they’ll let you leave. So the big debate was born this past week…and you better believe mama turned to statistics, research and data to inform what we did next. I taught the nurses how to export your feeding/volume data from the archaic system they chart in over to excel, and then how to filter and make a bar chart. We looked at your daily/hourly feeds for bottle vs. gavage (NG tube), and could pretty quickly see that you’ve been doing great consistently but only at 45%, with minor improvements week over week. PS I’m a NICU nurses worst nightmare. GIVE ME ALL THE DATA! Sorry, ladies.
So, we had a few options moving forward….
1. Wait another 2-3 weeks to see if you suddenly just get it and start taking 100% of your milk via bottle.
2. Go home with an NG tube (nasal tube to supplement feeding, basically what you’re on right now)
3. Have surgery for a G tube - this is a feeding tube surgically placed into your belly, which we’d use to supplement your feedings as we are currently with your NG tube.
After much deliberation on the pros and cons of each option, we’ve landed on scenario #3. We won’t go on about the reasons why (see our pros/cons worksheet below), but this is the best option for our family. So we’re staring down the barrel of yet another surgery, but it’s OK. Your mama has learned about her PTSD triggers and I’ll be honest, ‘surgery’ is one of them, which weighed heavily on our decision whether to go through with this or not. But guess what? This isn't about me, it's about you. So in my heart of hearts, I believe this is the best decision for you, for us, and for your development and growth. Mama is gonna hunker down and have a tough day that involves surgery, leaning on zanax as a reliable assistant (and plenty of pumping and dumping for the 24 hrs that follow, stop judging me! hehe).
So that’s where we’re at.
Um, also, you want to hear more news that proves that you are a freaking MIRACLE?!? Let’s talk about your brain for a second. As a reminder, you coded at 5 days old and blew a puncture in your lung (you have such a flare for the dramatic, come on dude!), this caused you to have an IVH (intraventricular hemorrhage) grade 3 on the right ventricle, grade 2 on the left. This, as we know, is an early indicator of worst case scenario: Cerebral Palsy. But, who knows, you’ve just gotta wait it out. You had a brain scan recently, and I’ll-be-fucking-damned, your scan came back normal. NORMAL. Wait what? So it appears your brain has healed itself, which is medically kind of impossible, but as we read your brain scan results amongst all of the docs and nurses at rounds today, everyone was just as surprised, and impressed. They actually laughed in disbelief, it was one of my happiest moments to surprise the doctors and blow them away. Dude, you are unbelievable. Diabolical. You are insane. I can’t even believe it.
Boy oh boy, if you would’ve told me in those first few week that the 2nd HARDEST weeks would be those just before we were to be discharged, I would have told you you’re crazy. We’ve been through some hellish stuff in here, NICU life is a serious roller coaster but damn, these past few weeks are really putting us through the ringer. You’re so close, dude! SO SO close. You’re basically off monitors, we have no respiratory concerns for you but dude, you gotta learn to eat! You’re taking roughly 45% of your feedings through bottle, the rest through your NG tube (nasogastric intubation). We need you to be at 100% before they’ll let you leave. So the big debate was born this past week…and you better believe mama turned to statistics, research and data to inform what we did next. I taught the nurses how to export your feeding/volume data from the archaic system they chart in over to excel, and then how to filter and make a bar chart. We looked at your daily/hourly feeds for bottle vs. gavage (NG tube), and could pretty quickly see that you’ve been doing great consistently but only at 45%, with minor improvements week over week. PS I’m a NICU nurses worst nightmare. GIVE ME ALL THE DATA! Sorry, ladies.
So, we had a few options moving forward….
1. Wait another 2-3 weeks to see if you suddenly just get it and start taking 100% of your milk via bottle.
2. Go home with an NG tube (nasal tube to supplement feeding, basically what you’re on right now)
3. Have surgery for a G tube - this is a feeding tube surgically placed into your belly, which we’d use to supplement your feedings as we are currently with your NG tube.
After much deliberation on the pros and cons of each option, we’ve landed on scenario #3. We won’t go on about the reasons why (see our pros/cons worksheet below), but this is the best option for our family. So we’re staring down the barrel of yet another surgery, but it’s OK. Your mama has learned about her PTSD triggers and I’ll be honest, ‘surgery’ is one of them, which weighed heavily on our decision whether to go through with this or not. But guess what? This isn't about me, it's about you. So in my heart of hearts, I believe this is the best decision for you, for us, and for your development and growth. Mama is gonna hunker down and have a tough day that involves surgery, leaning on zanax as a reliable assistant (and plenty of pumping and dumping for the 24 hrs that follow, stop judging me! hehe).
So that’s where we’re at.
Um, also, you want to hear more news that proves that you are a freaking MIRACLE?!? Let’s talk about your brain for a second. As a reminder, you coded at 5 days old and blew a puncture in your lung (you have such a flare for the dramatic, come on dude!), this caused you to have an IVH (intraventricular hemorrhage) grade 3 on the right ventricle, grade 2 on the left. This, as we know, is an early indicator of worst case scenario: Cerebral Palsy. But, who knows, you’ve just gotta wait it out. You had a brain scan recently, and I’ll-be-fucking-damned, your scan came back normal. NORMAL. Wait what? So it appears your brain has healed itself, which is medically kind of impossible, but as we read your brain scan results amongst all of the docs and nurses at rounds today, everyone was just as surprised, and impressed. They actually laughed in disbelief, it was one of my happiest moments to surprise the doctors and blow them away. Dude, you are unbelievable. Diabolical. You are insane. I can’t even believe it.
So that's where we sit right now.
You are incredible.
I am working on getting us out of here.
Our precious NICU family will guide us along the way.
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| Aunt Allie Crushing that Auntie game |
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| Esther, being adorable with you |
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| This is what your G tube will look like. |
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| Ovaries bursting, definitely want to have 18 more babies. |
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| So I have 2 boys. Dang I'm lucky. |
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