Maybe our newest little one will be ready to participate in the barnetog next year!
Tuesday, May 17, 2011
Syttende Mai
It hasn't gone completely unnoticed by me that today is Syttende Mai.
Maybe our newest little one will be ready to participate in the barnetog next year!
Maybe our newest little one will be ready to participate in the barnetog next year!
The Day After
Well, today has been a mixed bag. We don't know what to think at the moment. And it starts weighing pretty heavily.
First of all, from a cardiac standpoint, Silje is doing great. Her heart is pumping at a great rate, her blood oxygen level is way up there, her breathing is good. All the stuff that surgery was supposed to fix seems to be fixed. We were in a couple of times in the night and when we came in this morning, we found that one of the night nurses had made a bow out of gauze and put it in her hair, and put her monkey lovey in her bed with her. It was dreadfully cute
And the nurses were very positive saying that she was doing "stellar." So, that was wonderful to hear.
This afternoon, however, her right hand started moving rhythmically, and then her foot joined in. The nurse said it had done it once in the night, too, but by the time the doctor on the floor got there, it had stopped. Well, this time it stopped as well, but after a minute or so. Then, sometime later it did it again and the doctor had the nurse give her something to stop the seizure.
That worked for a couple of hours, in which time the doctor spoke with a neurologist who suggested a different medicine to try. The neurologist also called for an EEG.
So, in came another team of folks with their specialized equipment and began hooking up electrodes to her head.
She had still another seizure as they were finishing up the EEG, so maybe the neurologist can give us a good idea as to what is going on with her. The new medicine is supposed to make her a bit sleepy at first, and then those effects wear off and she shouldn't notice them after a few days. But, since it makes her sleepy to start with, they will wait a day to take her off the ventilator. While she was awake today, she was moving her mouth again like she wanted to nurse. So, hopefully we can get her to that point sooner rather than later.
And after they removed all those electrodes, she had one really amazing hairdo!
We take it hour by hour and work at taking it all in, but we start thinking that at some point our little girl, just six days old, could maybe have a little break from things and start enjoying life. She is a sweetheart.
First of all, from a cardiac standpoint, Silje is doing great. Her heart is pumping at a great rate, her blood oxygen level is way up there, her breathing is good. All the stuff that surgery was supposed to fix seems to be fixed. We were in a couple of times in the night and when we came in this morning, we found that one of the night nurses had made a bow out of gauze and put it in her hair, and put her monkey lovey in her bed with her. It was dreadfully cute
And the nurses were very positive saying that she was doing "stellar." So, that was wonderful to hear.
This afternoon, however, her right hand started moving rhythmically, and then her foot joined in. The nurse said it had done it once in the night, too, but by the time the doctor on the floor got there, it had stopped. Well, this time it stopped as well, but after a minute or so. Then, sometime later it did it again and the doctor had the nurse give her something to stop the seizure.
That worked for a couple of hours, in which time the doctor spoke with a neurologist who suggested a different medicine to try. The neurologist also called for an EEG.
So, in came another team of folks with their specialized equipment and began hooking up electrodes to her head.
She had still another seizure as they were finishing up the EEG, so maybe the neurologist can give us a good idea as to what is going on with her. The new medicine is supposed to make her a bit sleepy at first, and then those effects wear off and she shouldn't notice them after a few days. But, since it makes her sleepy to start with, they will wait a day to take her off the ventilator. While she was awake today, she was moving her mouth again like she wanted to nurse. So, hopefully we can get her to that point sooner rather than later.
And after they removed all those electrodes, she had one really amazing hairdo!
We take it hour by hour and work at taking it all in, but we start thinking that at some point our little girl, just six days old, could maybe have a little break from things and start enjoying life. She is a sweetheart.
Monday, May 16, 2011
Recovery: The Beginning
We're back in the room. Silje has been settled into place. It's still a pretty amazing scene, however. There are even more tubes, wires and electronic gizmos attached to this little girl. She's on the breathing machine (for the next day or so), on a pace maker (for the next few days or so) and they have her pretty heavily sedated so that she doesn't wake up too much.
Pace maker: apparently, as it has been explained to me just moments ago, the beat of the heart begins in the right atrium at the top of the heart, causing it to contract, moves along the side of the heart down to some specialized cells on the ventricle, causing it to contract. Silje's heart is initiating that beat, at the top of the heart, but after surgery, there is some swelling which causes an interruption of the electrical flow to the ventricle. That's where the pace maker comes in. It sees that the atrium has started a beat, and tells the ventricle to go ahead and beat, even though the ventricle didn't hear if from the atrium. So, Silje's heart is actually pacing itself, but the two parts need some help communicating. ...or so I understand it!
Dr. Abraham stopped by to give us the update on how surgery went. He said that everything went as planned, everything went well and Silje tolerated it all really well. He explained the part about the swelling, but Abarbedell explained about the flow of electricity. (The things we would all know had we been paying closer attention in whatever class that was.)
Jeni and I were allowed in to see her first, then Jeni's parents were allowed in.
Dr. P was just in to do a follow-up echo cardiogram (I didn't catch his full name all that well), and everything is looking like it should--blood flowing where it is supposed to be, and not flowing where it shouldn't. He was very indulgent to a curious daddy asking questions over his shoulder. He could see the valves in the heart clearly, but with all the bandaging, he only got a "high up" view of the aortic arch. It seemed to be all connected, though, and that's what this was all about.
Now we wait again and watch her progress through the night and into tomorrow and the next days.
We have really appreciated the thoughts and words of so many people. It may have seemed like I should have been focusing on my daughter more during this surgery, but I have to say that there wasn't much else going on in the waiting room this morning. So, it was a nice disctraction to have people commenting and passing along their well wishes.
Let's see what tomorrow brings, ...now that there is a tomorrow.
Pace maker: apparently, as it has been explained to me just moments ago, the beat of the heart begins in the right atrium at the top of the heart, causing it to contract, moves along the side of the heart down to some specialized cells on the ventricle, causing it to contract. Silje's heart is initiating that beat, at the top of the heart, but after surgery, there is some swelling which causes an interruption of the electrical flow to the ventricle. That's where the pace maker comes in. It sees that the atrium has started a beat, and tells the ventricle to go ahead and beat, even though the ventricle didn't hear if from the atrium. So, Silje's heart is actually pacing itself, but the two parts need some help communicating. ...or so I understand it!
Dr. Abraham stopped by to give us the update on how surgery went. He said that everything went as planned, everything went well and Silje tolerated it all really well. He explained the part about the swelling, but Abarbedell explained about the flow of electricity. (The things we would all know had we been paying closer attention in whatever class that was.)
Jeni and I were allowed in to see her first, then Jeni's parents were allowed in.
Dr. P was just in to do a follow-up echo cardiogram (I didn't catch his full name all that well), and everything is looking like it should--blood flowing where it is supposed to be, and not flowing where it shouldn't. He was very indulgent to a curious daddy asking questions over his shoulder. He could see the valves in the heart clearly, but with all the bandaging, he only got a "high up" view of the aortic arch. It seemed to be all connected, though, and that's what this was all about.
Now we wait again and watch her progress through the night and into tomorrow and the next days.
We have really appreciated the thoughts and words of so many people. It may have seemed like I should have been focusing on my daughter more during this surgery, but I have to say that there wasn't much else going on in the waiting room this morning. So, it was a nice disctraction to have people commenting and passing along their well wishes.
Let's see what tomorrow brings, ...now that there is a tomorrow.
Closing
They are closing. We were told that in about 15 or 20 minutes they will take us back up to the PICU (where we spent the night), and wait for our baby girl to come back to her room.
She will recover in the pediatric intensive care unit--the room she was in last night, and we will be able to be with her. They won't, probably, wake her up until tomorrow, we'll just watch as she starts recuperate from the procedure today.
If I get a chance, I'll update again in a while. For now, I'm going to pack up things and get ready to go up to the room.
She will recover in the pediatric intensive care unit--the room she was in last night, and we will be able to be with her. They won't, probably, wake her up until tomorrow, we'll just watch as she starts recuperate from the procedure today.
If I get a chance, I'll update again in a while. For now, I'm going to pack up things and get ready to go up to the room.
Off the Pump
Just got word that Silje is off the heart pump. They need to check her circulation before they start closing her up. Everything is going well.
So, it would seem that they have completed her arch and taken care of the hole between the ventricles. Let's hope they were able to do all of it in one surgery.
We're still a bit on edge here in the waiting room, waiting for some more final information, but this is good news so far.
We've heard from a whole lot of people this morning. The vibe is palpable....
So, it would seem that they have completed her arch and taken care of the hole between the ventricles. Let's hope they were able to do all of it in one surgery.
We're still a bit on edge here in the waiting room, waiting for some more final information, but this is good news so far.
We've heard from a whole lot of people this morning. The vibe is palpable....
Everything Going Well
We were just updated via the waiting room people, who are updated from the surgeon's nurse, that the surgery is ongoing, but everything is going just fine.
Deep breaths....
Deep breaths....
Waiting...
That's her on the screen, "lo..s, b" with a surgeon mask behind the time 8:27 showing the procedure is in process...
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