Here are two pictures from their last day here.
Sunday, June 12, 2011
Grandma & Grandpa
My parents stayed for one more day after we got home, but then left yesterday morning to return to their own home. My mom was here for two months, and my dad for one. We were all sad to see them go. We are so fortunate that they were able and willing to drop everything and come and help us. I don't know how we could have gotten through this without them.
Here are two pictures from their last day here.
Here are two pictures from their last day here.
Friday, June 10, 2011
Tuesday, June 7, 2011
Swim?
Not much to report today. Silje ate well, but we'll see tomorrow if it was enough and if she gained any weight or not. Otherwise we just hung out and cuddled on her.
Monday, June 6, 2011
Sink or Swim
We have several day’s worth to update. First, on Saturday my parents brought Stian down and we went to another nice park in Indianapolis. It was quite hot but we had a nice time anyway.
Then when it was time for my parents to go home, Kris headed up to Battle Ground to spend a couple of night at home. My mom has pictures up on her blog of his time up there, here is just one:
Kris headed home because my friend Laura flew down for 24 hours to visit. It was nice for Kris to have a break from the hospital and to spend some time with our little boy, and it was so nice for me to see Laura and have her entertain me.
As for Silje, she has been doing well. The results of her echo came back that the effusion is still gone. She has been eating pretty well, but still takes some food through the nose. Her neonatologist came in this afternoon and said she had a brilliant idea, we’re going to pull her nose tube and see if she sinks of swims. She said that Silje is taking about 90% of her food by mouth, she’s a good-sized baby, and she will probably do fine. So we’re going to try a couple of days of her taking all of her food by mouth and see if she gains weight. Before they were giving her 65 ml when they gave her a bottle, but now we will give her as much food as she can eat and not worry about it. So if she only takes 50 ml at one feeding we’ll hope she makes up for it at another feeding by taking 80 ml. So we will see how it goes and hope that she is able to gain weight doing this. If she does then maybe they will finally send us home!
In the meantime, we’ll get to look at our little girl without something taped to her face!
Then when it was time for my parents to go home, Kris headed up to Battle Ground to spend a couple of night at home. My mom has pictures up on her blog of his time up there, here is just one:
Kris headed home because my friend Laura flew down for 24 hours to visit. It was nice for Kris to have a break from the hospital and to spend some time with our little boy, and it was so nice for me to see Laura and have her entertain me.
As for Silje, she has been doing well. The results of her echo came back that the effusion is still gone. She has been eating pretty well, but still takes some food through the nose. Her neonatologist came in this afternoon and said she had a brilliant idea, we’re going to pull her nose tube and see if she sinks of swims. She said that Silje is taking about 90% of her food by mouth, she’s a good-sized baby, and she will probably do fine. So we’re going to try a couple of days of her taking all of her food by mouth and see if she gains weight. Before they were giving her 65 ml when they gave her a bottle, but now we will give her as much food as she can eat and not worry about it. So if she only takes 50 ml at one feeding we’ll hope she makes up for it at another feeding by taking 80 ml. So we will see how it goes and hope that she is able to gain weight doing this. If she does then maybe they will finally send us home!
In the meantime, we’ll get to look at our little girl without something taped to her face!
Friday, June 3, 2011
Falling Into Place
Today's update is very upbeat. We haven't gotten the green light for going home yet, but it is starting to feel like they are working up to it. Last night Silje took all but about 35ml of her nightly feeds from a bottle. The part they had to put in her tube was at 8:30 last night--which was a little unfair since she had just finished eating at around 7:00. Her normal feeds are three hours apart, so asking her to do one an hour and a half early was probably a bit much. All of the others (midnight, 3:00 and 6:00), she took the whole 65ml from a bottle. And all day today she nursed from mommy like a champ. So, her feeds are definitely getting better.
They came and did a follow-up echo cardiogram today. We didn't get the results of that today, and the tech doing the procedure wasn't giving up any hints, but from just looking at the image with my untrained eye, it looked pretty good. If the echo looks good to the doctors, then Silje can reduce her meds by one.
Next, one of the worries with Interrupted Aortic Arch is that it is often accompanied by something called DiGeorge Syndrome. DiGeorge Syndrome, for those who like to consult Dr. Google, is associated with all sorts of horrible and dreadful things. (To be honest, I haven't actually consulted Dr. Google myself because there's no sense scaring oneself silly any more than one has to!) AND, DiGeorge is really more associated with Type B interrupted arch than with Type A interrupted arch. Silje has/had Type A. But, they did the chromosome test just the same. Today the nurse looked it up in her chart--since no one had told us yet what the result was--and it appears that her chromosome test came back normal. Which, I guess, means that there is no DiGeorge Syndrome. (Thank goodness!)
They also did the MRI today. The results were somewhat expected and are, I have to say with much relief, very positive. They weren't perfect, but we didn't expect them to be. But, and this is the main thing, we can expect no effect whatsoever on her development from the small spots picked up on the MRI. That is, her seizures where caused by something (they can't say exactly what), and that something left some small spots in the MRI. Those spots, however, are something that the brain will completely work around as Silje develops. The neurologist said that she has seen kids that haven't had seizures, who have had no symptoms whatsoever, who have similar spots in MRIs done on them. She went on to say that in the normal aging process, a person can expect to get one such spot per decade of life--that is, a person of 50 probably has five or so such spots. So, in a couple of months, they will re-evaluate Silje and see if she can be taken off the medication that stopped the seizures. It seems that the expectation is that she will no longer need that medicine and the seizures will be gone.
So, it seems that the pieces are falling into place and it looks more and more like we will get to take Silje home in the next few days.
Keep those positive vibes coming. We still hear from many of you every day and we really appreciate the support.
They came and did a follow-up echo cardiogram today. We didn't get the results of that today, and the tech doing the procedure wasn't giving up any hints, but from just looking at the image with my untrained eye, it looked pretty good. If the echo looks good to the doctors, then Silje can reduce her meds by one.
Next, one of the worries with Interrupted Aortic Arch is that it is often accompanied by something called DiGeorge Syndrome. DiGeorge Syndrome, for those who like to consult Dr. Google, is associated with all sorts of horrible and dreadful things. (To be honest, I haven't actually consulted Dr. Google myself because there's no sense scaring oneself silly any more than one has to!) AND, DiGeorge is really more associated with Type B interrupted arch than with Type A interrupted arch. Silje has/had Type A. But, they did the chromosome test just the same. Today the nurse looked it up in her chart--since no one had told us yet what the result was--and it appears that her chromosome test came back normal. Which, I guess, means that there is no DiGeorge Syndrome. (Thank goodness!)
They also did the MRI today. The results were somewhat expected and are, I have to say with much relief, very positive. They weren't perfect, but we didn't expect them to be. But, and this is the main thing, we can expect no effect whatsoever on her development from the small spots picked up on the MRI. That is, her seizures where caused by something (they can't say exactly what), and that something left some small spots in the MRI. Those spots, however, are something that the brain will completely work around as Silje develops. The neurologist said that she has seen kids that haven't had seizures, who have had no symptoms whatsoever, who have similar spots in MRIs done on them. She went on to say that in the normal aging process, a person can expect to get one such spot per decade of life--that is, a person of 50 probably has five or so such spots. So, in a couple of months, they will re-evaluate Silje and see if she can be taken off the medication that stopped the seizures. It seems that the expectation is that she will no longer need that medicine and the seizures will be gone.
So, it seems that the pieces are falling into place and it looks more and more like we will get to take Silje home in the next few days.
Keep those positive vibes coming. We still hear from many of you every day and we really appreciate the support.
Thursday, June 2, 2011
Doing Better
Silje made some progress today in her eating. During the night last night she took some via bottle but had to take some through her tube too. She did better during the day today, she nursed 4 times and took a little more by bottle after nursing once. She also gained a few ounces yesterday, so that was good. We'll see how she does during the night tonight.
Tomorrow she has another echo scheduled and she is finally getting her MRI done.
Tomorrow she has another echo scheduled and she is finally getting her MRI done.
Wednesday, June 1, 2011
Hitting the Wall
So, when you're training for a marathon, you can't just train up in a weekend and call it good. You have to work your way up to it over time. That's how the speech and language woman, Linda, put it today. Silje was doing great and meeting all sorts of goals, but then she just ran out of steam. Last night for the 2:00am and the 5:00am feedings, she would only take about half of what she needed by mouth before she was too pooped out to continue and so they had to put the tube back in her nose. This morning she tried nursing for a bit, but she was just too tuckered out, and so we gave her the rest by tube. And at 11:00 we just gave her the whole thing by tube and let her sleep and rest up.
At 2:00, she nursed and did fine. Then at 5:00 she nursed and seemed to do fine, but she fell asleep again. By 6:45 when it was time for us to go (we can't be there from 7:00 to 8:00 during shift change), she was fussing and got hiccups and was inconsoleable. The nurse told Jeni that she could go ahead and nurse Silje for ten or fifteen minutes if she thought that would help. It sure seemed to. By the time we left, Silje was quiet and ready for bed.
Let's hope it goes well tonight with the feedings. But, if it takes a bit longer, that's OK. Nursing is an aerobic activity. And, while perhaps not a marathon, it still takes time and effort to build up the stamina and ability to keep going.
Also, Pam and Don came down from Battle Ground for a visit today. We mostly took turns holding Silje, and had lunch in the hospital cafeteria.
At 2:00, she nursed and did fine. Then at 5:00 she nursed and seemed to do fine, but she fell asleep again. By 6:45 when it was time for us to go (we can't be there from 7:00 to 8:00 during shift change), she was fussing and got hiccups and was inconsoleable. The nurse told Jeni that she could go ahead and nurse Silje for ten or fifteen minutes if she thought that would help. It sure seemed to. By the time we left, Silje was quiet and ready for bed.
Let's hope it goes well tonight with the feedings. But, if it takes a bit longer, that's OK. Nursing is an aerobic activity. And, while perhaps not a marathon, it still takes time and effort to build up the stamina and ability to keep going.
Also, Pam and Don came down from Battle Ground for a visit today. We mostly took turns holding Silje, and had lunch in the hospital cafeteria.
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