And We Wait…
So the last time I posted, it was October 10th. Today is November 21st . 42 days ago.
Just for a little glimpse into what it was like for us in the hospital…we arrived at Children’s on June 25th. 42 days later was August 7th. That was still 4 days away from Zach’s final surgery.
So we arrived at Children’s on Thursday, June 25th. Walking into anywhere new and unknown, is always a little intimidating, but walking into Children’s felt like a new beginning. It was filled with promise and positive. There was never a doubt in my mind that they wouldn’t fix him.
We met our nurse Christine and she was just so welcoming and wanted to know all about Zach. She was so attentive to my questions, and his history. But what really got me…was she picked Zach up, and wouldn’t put him down. She held him as we walked around the floor and she gave us a tour. She held him and showed him off to the other nurses on the floor. She rocked him, and smiled at him, and told other nurses “no” when they tried to touch him. I don’t think she’ll ever know how that felt-to have someone ooo and ahhhh over my baby. It was honestly such a warming feeling. The whole floor, and everyone we met gave me the warm and cozies.
On the way back to our room, we walked around the corner and Zachary’s two new doctors were on their way up to meet us. His surgeon and the GI doctor. Again- warm and cozies. They came up, at the end of their very long days, to meet us, to welcome us to Children’s and reassure us that we made the right decision.
When they left, we started to get settled in for the night. Being alone for the first time in our room…was a little hard. I was so hopeful, so exhausted, and so accustomed to how it was at Tufts. This all felt so different. The noises were all so different. The faces were all so different.
I started to unpack what I had brought with us in the ambulance. I then started to move around furniture.
Pre Zachary…I would have left the furniture where it was…I wouldn’t want to annoy anyone, or move something somewhere that was inconvenient. Post Zachary…we moved everything all around that room! It had to work for us. WE were the ones that were going to be living there. WE had to be as comfortable as possible.
Comfortable as possible…now THAT is something to laugh about!
At Tufts, our nurses has ended up stealing us a hospital bed to replace the regular bed that was in our room, so Chris and I could be as comfortable as possible holding, playing, and caring for Zach. We spent most of our days sitting in that bed..
When I looked around our new room at Children’s I saw a big crib for Zach, an end table, some built in cabinets, a recliner, a rocking chair, and a window seat…no bed. Wait…no bed??
I actually started to panic a little bit, and if I’m being totally honest…I started to tear up a little bit. One of the things I actually loved so much was being able to sleep with Zach right next to me. He didn’t settle alone in a crib, he slept on us or next to us in the bed every night.
Sure…it didn’t make for great sleeping for Chris and I…but it was better than listening to him cry.
So as I looked around our new room…where was the bed?! How was he going to sleep? How was I going to sleep? This isn’t going to work! I’m already so exhausted, I just need to sleep a little bit tonight, and now I’m not going to be able to…this isn’t good. Who do I ask about a bed? This is Children’s…SURELY there are beds for parents…WHERE WAS CHRIS GOING TO SLEEP?!? He’s 6’5”…where is he going to go?!?!
Christine came back into the room with Zach’s nutrition, and I decided to ask.
“Sooooo, is there a cot or something that could be brought in”?
“So we have the recliners…they actually recline all the way back and into a bed, and there’s the window bed for parents. I’ll make sure you have some clean linens”.
“Oh, ok…my husband is 6’5”…I just don’t know that he’s going to fit in the window bed”.
“I’ll go get you some linens”.
So that was that. I actually had to laugh a little bit, and remember talking to Zach saying that Daddy would have to figure it out I guess.
So it was now around 9:00pm, and I was exhausted. I got my pj’s, fixed the pillows up in the recliner, picked up Zach and tried to settle in for the night.
But my recliner was broken, and wouldn’t recline. The IV’s kept beeping because his line was occluded (this would turn out to be the story of my life for the next 2 months), the door to the supply closet was right across the hall so we heard it slamming shut all night.
Things.were.not.going.well.
Around midnight, I finally asked if there was a different recliner. Our night nurse, AJ was able to find us another one, so I at least got to recline a little bit. My eyes would close…and his IV would beep. My eyes would close…and the door would slam. My eyes would close and they would come in to check his vitals.
It was all just so new. New faces, new noises, new methods…just new, and unknown.
I watched the sky lighten as the sun came up, and watched Zach sleep in my arms so unaware of the fight he was fighting. So unaware of life outside of hospital walls. So unaware of the family at home that loved him so much. So unaware of the battle he had yet to fight.
The tears just started…as they did most every morning that I watched the sun come up with him in my arms.
After the weekend, Zach’s testing began. X-rays, blood work, and most importantly, his upper GI study. I don’t remember what day this happened on, but I was with him.
One thing I LOVED about Children’s is you can literally carry your child throughout every inch of that hospital if you want to. You can carry them, push them in a stroller, pull them in a wagon, or hold their hand while they walk. They don’t have to be pushed in their bed, or a wheelchair, or in their bassinet.
So I carried him down to X-ray and we waited for the radiologist to come in. I remember feeling so hopeful. “He pooped the other day, so he obviously doesn’t have another block”. “He had an upper GI not even 10 days ago, and everything moved right through…this will just rule out another block”.
As soon as they started the study, I had a sickening feeling that I was just so wrong. They kept moving him from side to side, taking so many pictures, waiting a couple of minutes, moving him side to side some more…I knew it moved slowly…but this was different than the last time. I just knew it. And then when they pushed in the final bit of barium, and he threw up…it just confirmed what I already knew…he had another block. Fingers crossed it was just a narrowing…but in my gut I knew. It was another block.
They sent us back upstairs and said to come back down in an hour for more pictures. I didn’t want to call Chris yet, because I wasn’t told anything. I was only getting worked up from my own fears. So I decided to wait until after the next set of pictures.
We went back down, and they did more turning from side to side, trying to get the barium to move down. It wasn’t moving. It was stopped. It was blocked. It wasn’t getting through.
My heart sank.
Back up we went to wait for another hour.
I called Chris. “It isn’t moving. Maybe it’s just a narrowing. He pooped the other day. Maybe it’s just moving really slowly”. So much of me wanted to be positive…but I saw it. I saw the dark in his intestine and belly on the screen just sitting there. I saw him vomit it up. There was no more positive. There was another block.
Back down we went for more x-rays…and this time…it was in my face real. It hadn’t moved in an hour. There was a block.
I felt a little numb- but not like I had before. This time was so different already. The first time was devastating. Something was wrong with our baby, who wasn’t even born yet…it was all unknown, and so scary.
The second time was traumatic. He was so sick. So sick. We almost lost him a couple of times.
What was this time going to be like? We know about it this time…he’s healthier. He’s stronger. He’s bigger. It’s a different hospital. He’s in the care of one of the best surgeons in the country.
I waited for the doctor.
He came in, and we discussed the study. He had a block. Even through it was clear 10 days before…he had another block.
So what does that mean? Surgery again? When? What would it look like? What would recover be? Could we go home before the surgery? Is this going to keep happening? Can we prevent it from happening again? Will this resolve itself?
So many questions. So much unknown.
I don’t remember most of his answers from that day, but the one thing I remember was…”we will not be doing anything, no surgery, until at least 12 weeks from his last surgery. So sometime in mid August”.
Mid August? It’s June 30th.
Can we go home before surgery? … No.
So, we’re waiting. It’s June 30th. And his surgery will be mid August…And we can’t go home…
It was a punch in the gut.
And we wait…
So the last time I posted, it was October 10th. Today is November 21st . 42 days ago.
Just for a little glimpse into what it was like for us in the hospital…we arrived at Children’s on June 25th. 42 days later was August 7th. That was still 4 days away from Zach’s final surgery.
So we arrived at Children’s on Thursday, June 25th. Walking into anywhere new and unknown, is always a little intimidating, but walking into Children’s felt like a new beginning. It was filled with promise and positive. There was never a doubt in my mind that they wouldn’t fix him.
We met our nurse Christine and she was just so welcoming and wanted to know all about Zach. She was so attentive to my questions, and his history. But what really got me…was she picked Zach up, and wouldn’t put him down. She held him as we walked around the floor and she gave us a tour. She held him and showed him off to the other nurses on the floor. She rocked him, and smiled at him, and told other nurses “no” when they tried to touch him. I don’t think she’ll ever know how that felt-to have someone ooo and ahhhh over my baby. It was honestly such a warming feeling. The whole floor, and everyone we met gave me the warm and cozies.
On the way back to our room, we walked around the corner and Zachary’s two new doctors were on their way up to meet us. His surgeon and the GI doctor. Again- warm and cozies. They came up, at the end of their very long days, to meet us, to welcome us to Children’s and reassure us that we made the right decision.
When they left, we started to get settled in for the night. Being alone for the first time in our room…was a little hard. I was so hopeful, so exhausted, and so accustomed to how it was at Tufts. This all felt so different. The noises were all so different. The faces were all so different.
I started to unpack what I had brought with us in the ambulance. I then started to move around furniture.
Pre Zachary…I would have left the furniture where it was…I wouldn’t want to annoy anyone, or move something somewhere that was inconvenient. Post Zachary…we moved everything all around that room! It had to work for us. WE were the ones that were going to be living there. WE had to be as comfortable as possible.
Comfortable as possible…now THAT is something to laugh about!
At Tufts, our nurses has ended up stealing us a hospital bed to replace the regular bed that was in our room, so Chris and I could be as comfortable as possible holding, playing, and caring for Zach. We spent most of our days sitting in that bed..
When I looked around our new room at Children’s I saw a big crib for Zach, an end table, some built in cabinets, a recliner, a rocking chair, and a window seat…no bed. Wait…no bed??
I actually started to panic a little bit, and if I’m being totally honest…I started to tear up a little bit. One of the things I actually loved so much was being able to sleep with Zach right next to me. He didn’t settle alone in a crib, he slept on us or next to us in the bed every night.
Sure…it didn’t make for great sleeping for Chris and I…but it was better than listening to him cry.
So as I looked around our new room…where was the bed?! How was he going to sleep? How was I going to sleep? This isn’t going to work! I’m already so exhausted, I just need to sleep a little bit tonight, and now I’m not going to be able to…this isn’t good. Who do I ask about a bed? This is Children’s…SURELY there are beds for parents…WHERE WAS CHRIS GOING TO SLEEP?!? He’s 6’5”…where is he going to go?!?!
Christine came back into the room with Zach’s nutrition, and I decided to ask.
“Sooooo, is there a cot or something that could be brought in”?
“So we have the recliners…they actually recline all the way back and into a bed, and there’s the window bed for parents. I’ll make sure you have some clean linens”.
“Oh, ok…my husband is 6’5”…I just don’t know that he’s going to fit in the window bed”.
“I’ll go get you some linens”.
So that was that. I actually had to laugh a little bit, and remember talking to Zach saying that Daddy would have to figure it out I guess.
So it was now around 9:00pm, and I was exhausted. I got my pj’s, fixed the pillows up in the recliner, picked up Zach and tried to settle in for the night.
But my recliner was broken, and wouldn’t recline. The IV’s kept beeping because his line was occluded (this would turn out to be the story of my life for the next 2 months), the door to the supply closet was right across the hall so we heard it slamming shut all night.
Things.were.not.going.well.
Around midnight, I finally asked if there was a different recliner. Our night nurse, AJ was able to find us another one, so I at least got to recline a little bit. My eyes would close…and his IV would beep. My eyes would close…and the door would slam. My eyes would close and they would come in to check his vitals.
It was all just so new. New faces, new noises, new methods…just new, and unknown.
I watched the sky lighten as the sun came up, and watched Zach sleep in my arms so unaware of the fight he was fighting. So unaware of life outside of hospital walls. So unaware of the family at home that loved him so much. So unaware of the battle he had yet to fight.
The tears just started…as they did most every morning that I watched the sun come up with him in my arms.
After the weekend, Zach’s testing began. X-rays, blood work, and most importantly, his upper GI study. I don’t remember what day this happened on, but I was with him.
One thing I LOVED about Children’s is you can literally carry your child throughout every inch of that hospital if you want to. You can carry them, push them in a stroller, pull them in a wagon, or hold their hand while they walk. They don’t have to be pushed in their bed, or a wheelchair, or in their bassinet.
So I carried him down to X-ray and we waited for the radiologist to come in. I remember feeling so hopeful. “He pooped the other day, so he obviously doesn’t have another block”. “He had an upper GI not even 10 days ago, and everything moved right through…this will just rule out another block”.
As soon as they started the study, I had a sickening feeling that I was just so wrong. They kept moving him from side to side, taking so many pictures, waiting a couple of minutes, moving him side to side some more…I knew it moved slowly…but this was different than the last time. I just knew it. And then when they pushed in the final bit of barium, and he threw up…it just confirmed what I already knew…he had another block. Fingers crossed it was just a narrowing…but in my gut I knew. It was another block.
They sent us back upstairs and said to come back down in an hour for more pictures. I didn’t want to call Chris yet, because I wasn’t told anything. I was only getting worked up from my own fears. So I decided to wait until after the next set of pictures.
We went back down, and they did more turning from side to side, trying to get the barium to move down. It wasn’t moving. It was stopped. It was blocked. It wasn’t getting through.
My heart sank.
Back up we went to wait for another hour.
I called Chris. “It isn’t moving. Maybe it’s just a narrowing. He pooped the other day. Maybe it’s just moving really slowly”. So much of me wanted to be positive…but I saw it. I saw the dark in his intestine and belly on the screen just sitting there. I saw him vomit it up. There was no more positive. There was another block.
Back down we went for more x-rays…and this time…it was in my face real. It hadn’t moved in an hour. There was a block.
I felt a little numb- but not like I had before. This time was so different already. The first time was devastating. Something was wrong with our baby, who wasn’t even born yet…it was all unknown, and so scary.
The second time was traumatic. He was so sick. So sick. We almost lost him a couple of times.
What was this time going to be like? We know about it this time…he’s healthier. He’s stronger. He’s bigger. It’s a different hospital. He’s in the care of one of the best surgeons in the country.
I waited for the doctor.
He came in, and we discussed the study. He had a block. Even through it was clear 10 days before…he had another block.
So what does that mean? Surgery again? When? What would it look like? What would recover be? Could we go home before the surgery? Is this going to keep happening? Can we prevent it from happening again? Will this resolve itself?
So many questions. So much unknown.
I don’t remember most of his answers from that day, but the one thing I remember was…”we will not be doing anything, no surgery, until at least 12 weeks from his last surgery. So sometime in mid August”.
Mid August? It’s June 30th.
Can we go home before surgery? … No.
So, we’re waiting. It’s June 30th. And his surgery will be mid August…And we can’t go home…
It was a punch in the gut.
And we wait…