8 Weeks Old.
3 Lbs 6 oz.
1530 Grams.
*the below is 3 posts in one - it took a minute. TLDR; new hospital is rough, heart surgery went SO WELL, no change in brain condition, transferring back to St. V's on Thurs 6/7*.
This last week has been probably the hardest week on all of our hearts – literally and figuratively. You had a big scary heart surgery and we transferred to a new hospital. I’ve struggled with how to author this part of our journey; it’s a huge milestone so I can’t let it pass, but our less than pleasant stay at the new hospital has me cognizant that our experience and perception is our own, narrowly focused on the 8 days we've spent here. We have friends who work at this new hospital, so here is my disclaimer: I really don’t mean to offend, I recognize that our experience is limited to only a few days, fewer nurses, and our family is so appreciative of the support offered across the entire staff here at Randall Children’s Hospital.
That said, I would be remiss if I didn’t record some of our highlights here in the new digs – which, from what we can tell, just simply has a different culture than the NICU at St. V’s that we’re accustomed to. At the end of the day, we've been able to find humor in all of it.
New hospital GREATEST HITS! ::
- Day 1 Kangaroo Care (skin to skin): Nurse nearly drops you as she’s moving you to my chest, laughs at how silly it is to drop babies (“slippery little buggers, huh?”). Guess what’s not silly? DROPPING MY BABY! Haha?
- Wrong birth date written on the white board; don’t worry, we fixed it
- No one knows (or seems to care) what your name or gender is, only referred to as “the baby”, and have heard “baby 1” and “baby 2” in the hallways
- 3 different staff members have entered the room and began talking to me about someone else’s baby, only to realize they’re in the wrong room
- Example: “Oh hi, how is Autumn doing today?”. Me: Ummm, are you asking me what I’m doing in the fall? and if not, who TF is Autumn? Wrong baby. Wrong room. Bye.
- Two nurses debating metric system conversion math: “Wait so should I divide or multiply? These numbers seem off but let’s just give it to him and see how he does”. Oh, bebe, trust that I had a very unapologetic “can I speak to your manager?” moment.
- To end on a bright spot, we have been so comforted knowing that a dear family friend is a nurse here at Randall - Emma was so warm and it was amazing to see a familiar face, particularly on the day of your heart surgery; she has most definitely been the highlight of our stay here.
Finally, to the heart surgery, bc that’s why we came here! Dude, everything went SO GOOD!
Going in on the day of your surgery (5/31), we knew a few things:
This last week has been probably the hardest week on all of our hearts – literally and figuratively. You had a big scary heart surgery and we transferred to a new hospital. I’ve struggled with how to author this part of our journey; it’s a huge milestone so I can’t let it pass, but our less than pleasant stay at the new hospital has me cognizant that our experience and perception is our own, narrowly focused on the 8 days we've spent here. We have friends who work at this new hospital, so here is my disclaimer: I really don’t mean to offend, I recognize that our experience is limited to only a few days, fewer nurses, and our family is so appreciative of the support offered across the entire staff here at Randall Children’s Hospital.
That said, I would be remiss if I didn’t record some of our highlights here in the new digs – which, from what we can tell, just simply has a different culture than the NICU at St. V’s that we’re accustomed to. At the end of the day, we've been able to find humor in all of it.
New hospital GREATEST HITS! ::
- Day 1 Kangaroo Care (skin to skin): Nurse nearly drops you as she’s moving you to my chest, laughs at how silly it is to drop babies (“slippery little buggers, huh?”). Guess what’s not silly? DROPPING MY BABY! Haha?
- Wrong birth date written on the white board; don’t worry, we fixed it
- No one knows (or seems to care) what your name or gender is, only referred to as “the baby”, and have heard “baby 1” and “baby 2” in the hallways
- 3 different staff members have entered the room and began talking to me about someone else’s baby, only to realize they’re in the wrong room
- Example: “Oh hi, how is Autumn doing today?”. Me: Ummm, are you asking me what I’m doing in the fall? and if not, who TF is Autumn? Wrong baby. Wrong room. Bye.
- Two nurses debating metric system conversion math: “Wait so should I divide or multiply? These numbers seem off but let’s just give it to him and see how he does”. Oh, bebe, trust that I had a very unapologetic “can I speak to your manager?” moment.
- To end on a bright spot, we have been so comforted knowing that a dear family friend is a nurse here at Randall - Emma was so warm and it was amazing to see a familiar face, particularly on the day of your heart surgery; she has most definitely been the highlight of our stay here.
Finally, to the heart surgery, bc that’s why we came here! Dude, everything went SO GOOD!
Going in on the day of your surgery (5/31), we knew a few things:
- You’ve had a large PDA since birth - very common condition for a preemie, knew you'd need surgery, just wanted you to gain more weight
- The day of your surgery you were 1480 grams; we wanted to wait until you were 1800+ grams min to operate but the cardiologist flagged you for a possible coarctation of the aorta, which is more serious and urgent (see diagrams below!)
- They wouldn’t be able to see if you had the coarc until they operated since your PDA was so large, but since they were pretty sure you had a co-arc they had to go in big and slice into your left/back abdomen to reach your heart through the ribs.
Going in on the day of your surgery we knew a few things:
- They wouldn’t be able to see if you had the coarc until they operated since your PDA was so large, but since they were pretty sure you had a co-arc they had to go in big and slice into your left/back abdomen to reach your heart through the ribs.
Going in on the day of your surgery we knew a few things:
1. The risks: We were made aware of the risks and had to consent to surgery; risks included: bleeding, infection, organ damage, death (that five letter word, oh Lord).
2. All signs pointed to a coarctation, so while they didn’t know for sure, it was warned that this procedure would be more significant, take longer (~4 hrs), have longer recovery time, and much greater risk long-term of recurrence and monitoring.
3. If it was just a simple PDA, they could close that endoscopically (less invasive) and that procedure could be done within an hour. Either way, safest approach was to go big and hope for the best.
Your mama woke up that morning and prayed and meditated and asked all of our people for their support in whatever form that came in. I understood the realities of d-e-a-t-h or suffering even further brain injuries, but dude I feel 100% confident that this amazing community who is rallied behind you, we willed you to thrive. You left our NICU hospital room at 9am. Your surgery began at 10:15am. At 10:45am the nurse came in to tell us it was just a PDA and NOT a co-arc (I was in the bathroom when this news was delivered, your daddy got this news and delivered it to me when I returned, I could not believe it – I actually thought he was messing with me), and that they were closing you up and you’d be back to us soon. At 11:30am, you were back in our room, cozy as can be. BRAVO!
They warned you would not be done until 2pm. You were gone for 2.5 hrs, in surgery for 45 minutes, and they didn’t even have to freeze and stop your heart like they would have done with a co-arc. This, little buddy, is what we call a fucking miracle. And yeah, mama uses that word fuck when she’s fucking blown away. All the Fucking fucks!
Then you entered recovery. Had it been a co-arc, recovery time was estimated at ~10 days. With just the PDA, you were expected to be on a ventilator for 2-3 days, you started fighting back against your vent 5 HOURS after the procedure. You were off the vent and resumed feedings the very next day. You’ve gained weight each day and your breathing has improved significantly.
You’re doing so well that our return to St. Vincent’s is scheduled for this Thurs, 6/7. This depends on a lot of things but so far, your echocardiogram has confirmed there is no co-arc, your head scan has confirmed no add’l damage has occurred, and your eye exam looks golden. So all signs point to GO, which makes us oh so happy.
Buddy, I gotta say. What a delightful couple of days. Thanks for taking it easy on us. We needed some good news and just like your daddy has been saying, everything is going to be alright. I’ve really gotta learn to trust him. ;-)
Pics below include a few of the rad battle wounds you’ll be leaving with. The ladies will love it, I promise. ;-)
2. All signs pointed to a coarctation, so while they didn’t know for sure, it was warned that this procedure would be more significant, take longer (~4 hrs), have longer recovery time, and much greater risk long-term of recurrence and monitoring.
3. If it was just a simple PDA, they could close that endoscopically (less invasive) and that procedure could be done within an hour. Either way, safest approach was to go big and hope for the best.
Your mama woke up that morning and prayed and meditated and asked all of our people for their support in whatever form that came in. I understood the realities of d-e-a-t-h or suffering even further brain injuries, but dude I feel 100% confident that this amazing community who is rallied behind you, we willed you to thrive. You left our NICU hospital room at 9am. Your surgery began at 10:15am. At 10:45am the nurse came in to tell us it was just a PDA and NOT a co-arc (I was in the bathroom when this news was delivered, your daddy got this news and delivered it to me when I returned, I could not believe it – I actually thought he was messing with me), and that they were closing you up and you’d be back to us soon. At 11:30am, you were back in our room, cozy as can be. BRAVO!
They warned you would not be done until 2pm. You were gone for 2.5 hrs, in surgery for 45 minutes, and they didn’t even have to freeze and stop your heart like they would have done with a co-arc. This, little buddy, is what we call a fucking miracle. And yeah, mama uses that word fuck when she’s fucking blown away. All the Fucking fucks!
Then you entered recovery. Had it been a co-arc, recovery time was estimated at ~10 days. With just the PDA, you were expected to be on a ventilator for 2-3 days, you started fighting back against your vent 5 HOURS after the procedure. You were off the vent and resumed feedings the very next day. You’ve gained weight each day and your breathing has improved significantly.
You’re doing so well that our return to St. Vincent’s is scheduled for this Thurs, 6/7. This depends on a lot of things but so far, your echocardiogram has confirmed there is no co-arc, your head scan has confirmed no add’l damage has occurred, and your eye exam looks golden. So all signs point to GO, which makes us oh so happy.
Buddy, I gotta say. What a delightful couple of days. Thanks for taking it easy on us. We needed some good news and just like your daddy has been saying, everything is going to be alright. I’ve really gotta learn to trust him. ;-)
Pics below include a few of the rad battle wounds you’ll be leaving with. The ladies will love it, I promise. ;-)
On to the next one....
xo.
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| "She almost dropped my baby" |
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| Day 2. Better. |
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| Well wishes from the sweetest kiddos |
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| Just before heading into surgery, wide awake. |
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| Big brother fixes everything! |
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| Right Arm PICC line scar |
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| Heart surgery incision |
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| hangman |
1 comment:
Go Silas, go!!! ❤️❤️
Glad you're headed back to StV. Baby #1, 2, etc? WTF...um, no.
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