Saturday, March 29
The official results of the heart ultrasound are back and show that the duct did not close with the first round of medication. Tobias will start another round tomorrow. He is using today to rest up. His weight is holding steady at 2 lbs 4 ounces today, the same as yesterday. His feedings were increased to 12 ml every three hours and his nutrition through the iv has been eliminated, at least for now. It does not seem like anyone could survive on just a couple teaspoons of milk, but he's pretty small and I guess the doctors know what they're doing. I was able to hold him today (for the third time!). He did ok, not as well as Thursday, but well enough that we were able to have a little bit of time. He seems even smaller when he comes out of the incubator into the real world.
I will let you know when we have any more news. I think it will be a long, slow process. As always, we appreciate your prayers and good wishes.
Saturday, March 29, 2008
Thursday, March 27, 2008
3 weeks old today!
Tobias has had a good day today. He now weighs 2 lbs 3 3/4 ounces and is looking good. His belly is positively round. He caused some excitement in the wee hours of the morning by trying to remove himself from his vent- and proving he is not quite ready for that yet- but has been very well-behaved since then.I was able to hold him this morning (for the second time!) and he did just fine. No alarms or funny numbers, just settled down and napped. Quite a change from the boy who did not even want to be touched. And he continued to be fairly stable all day without a lot of the usual yo-yo numbers that keep the nurses running in and out. He was displaying some of his old tricks before I left tonight, but I imagine we wore him out.
He also continues to do well with his feedings and is finishing up the first round of his heart medicine today. He will have an ultrasound tomorrow to see how his heart is doing. Other than that, the immediate plan is sleep and grow.
Tobias has had a good day today. He now weighs 2 lbs 3 3/4 ounces and is looking good. His belly is positively round. He caused some excitement in the wee hours of the morning by trying to remove himself from his vent- and proving he is not quite ready for that yet- but has been very well-behaved since then.I was able to hold him this morning (for the second time!) and he did just fine. No alarms or funny numbers, just settled down and napped. Quite a change from the boy who did not even want to be touched. And he continued to be fairly stable all day without a lot of the usual yo-yo numbers that keep the nurses running in and out. He was displaying some of his old tricks before I left tonight, but I imagine we wore him out.
He also continues to do well with his feedings and is finishing up the first round of his heart medicine today. He will have an ultrasound tomorrow to see how his heart is doing. Other than that, the immediate plan is sleep and grow.
Tuesday, March 25, 2008
The Toledo News
Greetings from Toledo-
The good news is that things are progressing slowly here. The doctor told me that bad things happen quickly and good things happen slowly. So we are content with the pace here. Much of the time is spent monitoring a variety of things- numbers, numbers, numbers,- and attempting to maintain the best balance possible.
The news in a nutshell-
The results of the heart ultrasound are in. Before a baby is born, the heart has a bypass which allows the blood to skip the lungs since they are not yet functioning. This duct often does not close properly in preemies and that is the cause of the murmur. Toby has begun a 3 day treatment w/ drugs to encourage it to close. It will be checked again at the end of the week. The doctor says they will try drugs 3 times before judging them a failure and considering surgery.
Tobias had his second blood transfusion yesterday evening. He feels much better now! For several days he had been unable to tolerate stimulation and I had even had to give up touching him. (It made some of those aforementioned numbers go crazy.) He is working so hard just on his basic body functions that he has no energy left over. And that was compounded by the anemia and blood lost to the monitoring so he was feeling a bit run down. He is doing much better today, though still not welcoming too much hands-on. (Interesting fact- a baby his size has only about two and a half ounces of blood and will not be able to maintain his supply for several more months. Expect more transfusions.) He officially passed the 2 lb mark today. (I think the added blood helped. Is that cheating?)
He is now receiving almost 2 tsps of milk every 3 hours through his feeding tube and is tolerating it well. The rest of his nutrition is still through an IV. He is expected to remain at this level the rest of the week while the heart problem is treated.
Thank you all for your prayers and support. You are a big encouragement to us. God is faithful and you are an evidence to us of that.
The good news is that things are progressing slowly here. The doctor told me that bad things happen quickly and good things happen slowly. So we are content with the pace here. Much of the time is spent monitoring a variety of things- numbers, numbers, numbers,- and attempting to maintain the best balance possible.
The news in a nutshell-
The results of the heart ultrasound are in. Before a baby is born, the heart has a bypass which allows the blood to skip the lungs since they are not yet functioning. This duct often does not close properly in preemies and that is the cause of the murmur. Toby has begun a 3 day treatment w/ drugs to encourage it to close. It will be checked again at the end of the week. The doctor says they will try drugs 3 times before judging them a failure and considering surgery.
Tobias had his second blood transfusion yesterday evening. He feels much better now! For several days he had been unable to tolerate stimulation and I had even had to give up touching him. (It made some of those aforementioned numbers go crazy.) He is working so hard just on his basic body functions that he has no energy left over. And that was compounded by the anemia and blood lost to the monitoring so he was feeling a bit run down. He is doing much better today, though still not welcoming too much hands-on. (Interesting fact- a baby his size has only about two and a half ounces of blood and will not be able to maintain his supply for several more months. Expect more transfusions.) He officially passed the 2 lb mark today. (I think the added blood helped. Is that cheating?)
He is now receiving almost 2 tsps of milk every 3 hours through his feeding tube and is tolerating it well. The rest of his nutrition is still through an IV. He is expected to remain at this level the rest of the week while the heart problem is treated.
Thank you all for your prayers and support. You are a big encouragement to us. God is faithful and you are an evidence to us of that.
Sunday, March 23, 2008
They will be taking an ultrasound of Toby's heart tomorrow, to see if the suspected murmur is real or not. If the murmur is real, they will be able to assess the extent of the damage.
He is adjusting well to being fed, and they have increased the feedings to 4 miligrams every 3 hours.
The Ronald MacDonald House continues to take good care of Mom. A group came in this morning and cooked a wonderful Easter breakfast. She is healing well.
Friday, March 21, 2008
Two Weeks
Happy 2 week birthday, Toby. He has had a pretty good week. It's been 3 days now on the regular ventilator and he is handling it ok. The doctor explained to me today that his lungs are damaged and beaten up from being on the ventilator when he was born. But the x-rays show that they are not getting any worse, so it will just be something to deal with and which will require extra care when they attempt to wean him off the vent. He has an on again off again relationship with the light to deal with his bilirubin. About what I would expect. And there are some other things which are a balancing act between the damage that treatment can do and the hazards of not treating. But all in all, I think he's doing pretty well. No major problems to deal with yet. God has indeed been merciful and sustained Tobias through all this. And tonight-I have just returned from holding my son for the first time. What a sweet privilege! He seems even smaller wrapped up and placed in my hands. No bigger than a minute. I think there were more tubes and wires than there were baby. Our time had to be cut short because of some problems with his breathing tube and heart rate, and the minutes we did have went by in a wink (Isn't time funny the way it speeds and slows), but thanks be to God who gave us the good gift of that time. It made this mama very happy. And thanks to all of you who are praying with us and for us. We know that God is good and in control and we thank him also for the peace He has given in this "storm".
Nancy
Nancy
Tuesday, March 18, 2008
Another update from Toledo
I spent the morning with Toby. He is doing well and enjoying his new ventilator. His numbers on it are improving and he is not working the nurses so hard. His weight this morning was 1 lb 14 ounces- so he is back up to and a teeny bit above his birth weight. The morphine was changed to "as needed" status, and his nurse this morning found that he did not need it. So that is good news. And joy of joys (whoever thought this would be good news?), I was able to change his diaper this morning. How exciting it was. If he continues to do well, in a couple days I may be able to hold him. He IS back under the light and not cooperating fully in every area, but overall, he's doing pretty well. Praise God and keep praying, as do we, that as God promised, His lovingkindness will not depart from us.
Monday, March 17, 2008
changes
Toby has been taken off of the oscillating respirator, and put back on the calmer one. He is also receiving one milliliter of milk every four hours to see how his little stomach will handle it.
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