OK, so a small delay in getting kicked out. We had the bags in the car, the transport team was assembled in the hallway and then the doctor read the echo cardiogram--there was a slight effusion evident. So, to be on the safe side, they are keeping Silje here one more day and they will do a new echo in the morning and see how things look.
The effusion is a small amount of blood captured inside the pericardium (the sac around the heart). That blood had to come from somewhere and they want to make sure there doesn't get to be more. The leads from the pace maker came out this morning, so that could have caused it, and the RA tube came out, so that could be the culprit. Either way, if they needed to drain anything from the pericardium, that would be done here in the children's hospital and they didn't want her to get all the way over to the NICU just to come back to the PICU.
So, mostly just a quiet day here holding our little girl.
The speech and language pathologist was by and was very impressed by Silje's pacifier sucking abilities--even with the added level of difficulty of the pacifier having been dipped in mother's milk! She's very advanced....
So, tomorrow, off to the NICU and the wonders of learning how to swallow.
Monday, May 23, 2011
Sunday, May 22, 2011
Kicking Us Out
The cardiologist and the pediatric intensivist came around on rounds this morning and rather cavalierly unplugged Silje’s pacemaker saying “Oh, we think she’ll probably be fine.” Kris’s and my response was “What do you mean you THINK she’ll PROBABLY be fine?!” They laughed. Hmmm. But so they say once the heart goes back into sinus rhythm it’s unlikely to go out of it again. And so far they have been right. She’s been just fine today.
And then later in the day the cardiac surgeon came by with the intesivist and he said he would take out her pacemaker wires and RA line in the morning and then they were kicking us out of the PICU. They are sending us back to the NICU tomorrow. This is a good thing. And so we can begin in earnest the process of learning how to nurse again. Silje has been going to town on the pacifier today, so she’s ready. Hopefully it won’t be too much of a struggle, though they tell us it certainly could be.
They are going to wait on doing the MRI until closer to when they send us home – whenever that will be. She’ll need to be intubated again for that, though only for an hour or so, and they don’t want to mess up her progress with feeding and such.
Silje pretty much slept through the night last night. And consequently has been awake just about all day – with little tiny 10 minute cat naps here and there. She’s been out of bed and in our arms quite a bit, which has been fun.
And then later in the day the cardiac surgeon came by with the intesivist and he said he would take out her pacemaker wires and RA line in the morning and then they were kicking us out of the PICU. They are sending us back to the NICU tomorrow. This is a good thing. And so we can begin in earnest the process of learning how to nurse again. Silje has been going to town on the pacifier today, so she’s ready. Hopefully it won’t be too much of a struggle, though they tell us it certainly could be.
They are going to wait on doing the MRI until closer to when they send us home – whenever that will be. She’ll need to be intubated again for that, though only for an hour or so, and they don’t want to mess up her progress with feeding and such.
Silje pretty much slept through the night last night. And consequently has been awake just about all day – with little tiny 10 minute cat naps here and there. She’s been out of bed and in our arms quite a bit, which has been fun.
Saturday, May 21, 2011
Gooder News
We've been here in Indy for over a week. Tomorrow will be a week in the PICU. Time for gooder news, that's what I say.
First, the update--the things we learned after we got back from the day pictured below. When I got back to the room, Silje had her nasal cannula (the tube feeding air to her nostrils) in her mouth and she was sucking on it. Silly girl! I moved it to her nose again and she got very grumpy. She looked like she wanted something to suck on. I gave her a pacifier. She's not very good at it, but she took it in her mouth and started chewing and sucking on it a bit. In most babies, this might not be remarkable. But just yesterday they were telling us how difficult it is for heart babies to learn this again after their surgeries.
Next, I noticed that the pacemaker had two orange lights (one for atrium, one for ventricle) instead of the green lights it has had up til now. The nurse confirmed that Silje's heart is indeed doing its own sinus rythmn, just not all the time. I'm not the expert, but I think this is a very good sign that she will not have to have a permanent pacemaker--another thing they were explaining yesterday that made us a bit down. If her heart takes over a bit better, and they can take the pacemaker off, then it's all the sooner over to the NICU again and one more step on the road to a very good recovery.
Also, they said that at 4:00 this afternoon, they were going to stop her infusion of TPN (food stuff straight into the blood via the heart), so she would no longer need the RA tube going to her heart (I think RA stands for right atrium). This is another step toward getting over to the NICU.
Finally, the nurse helped get Silje into her mother's arms for the first time since Thursday May 12th.
and Silje just looked so much more bright-eyed this afternoon than she has all week
So, things seem to be on an upward trend as pertains to Silje.
Meanwhile, Pam and Don brought Stian to us this morning for his first visit since last Saturday. He got to meet his little sister for the first time. Silje gave Stian a pink pig as a gift (he named the pig Charlie--it's a girl pig). And we went to a park in Zionsville, to an ice cream shoppe (Stian got bubble gum flavored ice cream--we all cringed) and then back to the hospital where we had some lunch in the cafeteria, mommy read Stian some stories and we all learned of the day's updates on our little girl.
First, the update--the things we learned after we got back from the day pictured below. When I got back to the room, Silje had her nasal cannula (the tube feeding air to her nostrils) in her mouth and she was sucking on it. Silly girl! I moved it to her nose again and she got very grumpy. She looked like she wanted something to suck on. I gave her a pacifier. She's not very good at it, but she took it in her mouth and started chewing and sucking on it a bit. In most babies, this might not be remarkable. But just yesterday they were telling us how difficult it is for heart babies to learn this again after their surgeries.
Next, I noticed that the pacemaker had two orange lights (one for atrium, one for ventricle) instead of the green lights it has had up til now. The nurse confirmed that Silje's heart is indeed doing its own sinus rythmn, just not all the time. I'm not the expert, but I think this is a very good sign that she will not have to have a permanent pacemaker--another thing they were explaining yesterday that made us a bit down. If her heart takes over a bit better, and they can take the pacemaker off, then it's all the sooner over to the NICU again and one more step on the road to a very good recovery.
Also, they said that at 4:00 this afternoon, they were going to stop her infusion of TPN (food stuff straight into the blood via the heart), so she would no longer need the RA tube going to her heart (I think RA stands for right atrium). This is another step toward getting over to the NICU.
Finally, the nurse helped get Silje into her mother's arms for the first time since Thursday May 12th.
and Silje just looked so much more bright-eyed this afternoon than she has all week
So, things seem to be on an upward trend as pertains to Silje.
Meanwhile, Pam and Don brought Stian to us this morning for his first visit since last Saturday. He got to meet his little sister for the first time. Silje gave Stian a pink pig as a gift (he named the pig Charlie--it's a girl pig). And we went to a park in Zionsville, to an ice cream shoppe (Stian got bubble gum flavored ice cream--we all cringed) and then back to the hospital where we had some lunch in the cafeteria, mommy read Stian some stories and we all learned of the day's updates on our little girl.
Friday, May 20, 2011
Poem
Some days are better than others. There has been nothing in particular that has happened today to make it a harder day, but it has been. I guess speaking with a cardiac surgeon, a cardiologist who specializes in pacemakers, a pediatric intensivist, a neurologist, a speech therapist, a physical therapist and an occupational therapist all in the span of like 5 hours is just a little much.
On the bright side, they are hoping to get her 100% on breast milk tomorrow, I got to change her diaper for the first time today, they think they will finally let us hold her tomorrow, and I get to see my little boy tomorrow, who I miss something fierce.
So today seems like a good day to share a poem written by my awesome doula, Tammy. She sent it a couple of days ago and it just really captures how I’ve been feeling.
For Jeni
Tubes snake around my daughter
Feeding her
And feeding on her;
Too small
To have words for the things they are doing
The things she is hearing, feeling
Too new to remember anything about fear or doubt,
Accepting
All we give her
What we think she needs,
What they tell us
Must be done.
But my right hand wants
To rip out the tubes
Rip out my hair
Rip out anything blocking her perfection
To reveal the essence of this child,
Let her butterfly wings unfold
The rest of the way.
You should see her smile
Sweet lips without the ventilator
You should hear her cry – music!
Unencumbered by tape
We should be able to hold her close, new skin on old
Or swaddled in something hand-knit
As we pass her back and forth
While she sleeps.
I want to rest my head on her tiny pigeon chest
And listen to her heart beat
Listen to her very center
Drumming steady, strong and true.
So I wait, holding onto this vision,
Left hand holding onto the right,
Tight atop my own heart
Pulsing
To the rhythm of hope.
T. Sandel – May 17, 2011
On the bright side, they are hoping to get her 100% on breast milk tomorrow, I got to change her diaper for the first time today, they think they will finally let us hold her tomorrow, and I get to see my little boy tomorrow, who I miss something fierce.
So today seems like a good day to share a poem written by my awesome doula, Tammy. She sent it a couple of days ago and it just really captures how I’ve been feeling.
For Jeni
Tubes snake around my daughter
Feeding her
And feeding on her;
Too small
To have words for the things they are doing
The things she is hearing, feeling
Too new to remember anything about fear or doubt,
Accepting
All we give her
What we think she needs,
What they tell us
Must be done.
But my right hand wants
To rip out the tubes
Rip out my hair
Rip out anything blocking her perfection
To reveal the essence of this child,
Let her butterfly wings unfold
The rest of the way.
You should see her smile
Sweet lips without the ventilator
You should hear her cry – music!
Unencumbered by tape
We should be able to hold her close, new skin on old
Or swaddled in something hand-knit
As we pass her back and forth
While she sleeps.
I want to rest my head on her tiny pigeon chest
And listen to her heart beat
Listen to her very center
Drumming steady, strong and true.
So I wait, holding onto this vision,
Left hand holding onto the right,
Tight atop my own heart
Pulsing
To the rhythm of hope.
T. Sandel – May 17, 2011
Thursday, May 19, 2011
Cheerier
So, the doctors sounded much cheerier this morning. During rounds they all went through the various levels of this and amounts of that how she is responding to various things. She hasn't had any more seizures since yesterday afternoon, so they said her breathing tube could probably come out this afternoon after they got some levels.
Well, Silje didn't want to wait for some dopey old levels to be taken, she wanted the breathing tube out now! Around noon she had had it and she gave it a good yank. Well, it didn't come all the way out, of course (it's about 10 inches in there!), but it did come out enough to be an obstruction to her breathing. Oh, hooray. As if dad's morning hadn't been full enough.
Though they claimed she was never in any real danger, the whole scene still made me nervous. There were six in the room. Mostly not doing much, but one was bagging her and it wasn't helping. They decided that they would just go ahead and remove the tube the rest of the way.
Then her breathing went up to about 100 breaths per minute (take a moment and see if you can do that!), and that made me more nervous. But, her oxygen level was rising and after about 10 minutes, she started to slow her breathing and things started to calm down.
So, she looks like this!
I think she's going to need another "spa day" to get a facial to get the rest of the tape remnants off her face. But for now, I'm just happy to see her cheeks.
Well, Silje didn't want to wait for some dopey old levels to be taken, she wanted the breathing tube out now! Around noon she had had it and she gave it a good yank. Well, it didn't come all the way out, of course (it's about 10 inches in there!), but it did come out enough to be an obstruction to her breathing. Oh, hooray. As if dad's morning hadn't been full enough.
Though they claimed she was never in any real danger, the whole scene still made me nervous. There were six in the room. Mostly not doing much, but one was bagging her and it wasn't helping. They decided that they would just go ahead and remove the tube the rest of the way.
Then her breathing went up to about 100 breaths per minute (take a moment and see if you can do that!), and that made me more nervous. But, her oxygen level was rising and after about 10 minutes, she started to slow her breathing and things started to calm down.
So, she looks like this!
I think she's going to need another "spa day" to get a facial to get the rest of the tape remnants off her face. But for now, I'm just happy to see her cheeks.
Wednesday, May 18, 2011
Cutest Little Feeding Tube EVER!
OK, so we need a picture for the day. I wasn't going to put one up because things hadn't changed that much. But, alas, a few minutes ago I decided that things HAD changed a bit.
Silje's night nurse last night decided it would be "Spa Day." Silje had had such a rough hair day yesterday with EEG hair, so the nurse washed her hair, did it up with her little gauze bow. While she was working her hair, the nurse decided maybe a little Mohawk would be the way to go.
And she put little, cute pink booties on her
If you look at the first picture, you can see the green tube going into her nose. That tube is feeding her Jeni's milk. 10ml over five hours. Sounds very comforting, doesn't it? Well, it's a start.
Silje's night nurse last night decided it would be "Spa Day." Silje had had such a rough hair day yesterday with EEG hair, so the nurse washed her hair, did it up with her little gauze bow. While she was working her hair, the nurse decided maybe a little Mohawk would be the way to go.
And she put little, cute pink booties on her
If you look at the first picture, you can see the green tube going into her nose. That tube is feeding her Jeni's milk. 10ml over five hours. Sounds very comforting, doesn't it? Well, it's a start.
One Week Old
Silje turned one week old this morning at 1:24am. Yep, one whole entire week! Seven whole days.
She's had a lot going on in her short little life. She's had tape on her face almost her entire life. It doesn't seem fair.
Her heart and everything associated with the surgery continue to make good progress. She continues to have some small seizures in her right arm, though the medicine seems to be helping. Once the medicine for that gets balanced out and dependable, then the breathing tube can come out and we can think about her being transferred back over to the NICU.
A couple of lines have come out today. The ones in her belly button are out. The one giving her heart-strengthening medicine is out. Her catheter is out. So, there are definitely fewer things poking her. Though, they did add a feeding tube (through her cute little nose), so there is one more thing poking her. The feeding tube means that she can start to get mother's milk. Jeni has been pumping and the nursing staff have been freezing it away getting ready for her to have it. They will start with the earliest milk and move up to the most recent milk. There should still be milk on tap, so to speak, by the time she's ready to start nursing.
As to the seizures: they aren't big. They are very localized. They caught one on the EEG they did yesterday and the neurologist said it was very localized. He said he couldn't tell what is causing it until they can do a CT scan or, better yet, an MRI. In the night they did a CT scan, but there wasn't anything conclusive on that. So, very mysterious. They really need to do an MRI to try to find something more conclusive. But, since the MRI is a big magnet, and she has wires going into her heart, the MRI will have to wait.
The heart surgeon pointed out, though, that it doesn't really matter at this point what an MRI might point to, the treatment would be the same as what she is getting. So, no matter what is causing the seizures, the treatment would be the same. So, I guess we can wait a number of days for the MRI.
We'll let her little body rest and recover from big surgery. We'll let her get stabilized on her meds. We'll get to the point of removing the breathing tube, then the point of removing the pace maker. Then we'll go from there.
Things really are going well, it's just a lot of waiting. ... and a long time to have tape on your face.
She's had a lot going on in her short little life. She's had tape on her face almost her entire life. It doesn't seem fair.
Her heart and everything associated with the surgery continue to make good progress. She continues to have some small seizures in her right arm, though the medicine seems to be helping. Once the medicine for that gets balanced out and dependable, then the breathing tube can come out and we can think about her being transferred back over to the NICU.
A couple of lines have come out today. The ones in her belly button are out. The one giving her heart-strengthening medicine is out. Her catheter is out. So, there are definitely fewer things poking her. Though, they did add a feeding tube (through her cute little nose), so there is one more thing poking her. The feeding tube means that she can start to get mother's milk. Jeni has been pumping and the nursing staff have been freezing it away getting ready for her to have it. They will start with the earliest milk and move up to the most recent milk. There should still be milk on tap, so to speak, by the time she's ready to start nursing.
As to the seizures: they aren't big. They are very localized. They caught one on the EEG they did yesterday and the neurologist said it was very localized. He said he couldn't tell what is causing it until they can do a CT scan or, better yet, an MRI. In the night they did a CT scan, but there wasn't anything conclusive on that. So, very mysterious. They really need to do an MRI to try to find something more conclusive. But, since the MRI is a big magnet, and she has wires going into her heart, the MRI will have to wait.
The heart surgeon pointed out, though, that it doesn't really matter at this point what an MRI might point to, the treatment would be the same as what she is getting. So, no matter what is causing the seizures, the treatment would be the same. So, I guess we can wait a number of days for the MRI.
We'll let her little body rest and recover from big surgery. We'll let her get stabilized on her meds. We'll get to the point of removing the breathing tube, then the point of removing the pace maker. Then we'll go from there.
Things really are going well, it's just a lot of waiting. ... and a long time to have tape on your face.
Subscribe to:
Posts (Atom)