2/23/04 - This was a rough day. Tobias started declining overnight and by mid
morning he was requiring a lot of oxygen in his ventilator. They switched him to a new
ventilator that is more efficient at promoting gas exchange and it was no help. They
cranked the settings on the new ventilator and still Toby was not oxygenating. He had
an echo to look at his PDA and it is still open, and his blood pressure in his lungs is
the same as his circulating blood pressure. By chest Xray the lungs looked very
contracted. This means with the lungs contracted down, he can't get blood into them.
They put him back on dopamine to increase his circulating blood pressure to try to
help push blood through the lungs and open them up, but that didn't work. He turned
very pale and clammy looking. Finally, this evening they gave him nitric oxide
(inhaled) to dilate the lungs and that seems to have done the trick. When we left him,
he was stable with good oxygenation of his blood. His skin was pinking back up
again. He is on muscle relaxers so he can't fight the respirator and morphine to kill the
pain and help him stay relaxed mentally. Another chest Xray showed his lungs are
more open than they were this afternoon.
The hope is that as the lungs expand he will not need so much help oxygenating his
blood and they will be able to slowly wean him off the drugs and machine. Of course
there are no guarantees. Right now it's just wait and see.
2/22/04 - Today Toby gets his third dose of indomethacin for his PDA. So far they can
still hear the murmur. He is back under the billi light because he was starting to
jaundice again. This is not unusual at all. He also has been showing some signs of
discomfort so he has had a little morphine, but he's not back on the drip. His lungs
are pretty clear and only require suctioning every 8 hours. Used to be every 4.
Another very interesting thing that happened is that the nurse commented on his
personality. She said he has a very sweet personality in that he does not protest them
touching and moving him, etc. It's strange to think that these little tiny creatures can
have distinguishable personalities, and it was very nice of the nurse to say that he is a
2/21/04 - Tobias is off dopamine! He is regulating his blood pressure well on his own.
Good news again. This means he is off all the drugs he was taking and is now getting
fluids and nutrients only through his I.V. Pretty good for only 5 days out. His
hematocrit was low again last night, so he got two transfusions.
Heart scan showed he has a medium-sized PDA, which they have decided to treat with
indomethacin starting this afternoon. He will get three treatments in the next day and a
half and then we will have to wait to see whether the hole closes. This should greatly
improve his ability to oxygenate his blood and maybe get him off the respirator. If the
indomethacin does not work, they will try two more rounds of treatment before we
have to go to surgery.
2/20/04 - Today Toby is getting an ultrasound to determine the severity of his PDA.
Depending on the results, he may start treatment or they may wait to see if it closes on
its own. Also he is now off morphine, which is great news considering how much
swelling and bruising he had. The billi lights are off because his jaundice is pretty
much gone. Good job healing, Toby!
2/19/04 - Toby's brain scan results are normal!!! What a great day for him. He is also
requiring much less dopamine and morphine. His skin looks great. It has more pink
to it and most of the evidence of the bruising is gone. Every day he seems to improve
a little bit.
2/18/04 - Toby is off the insulin drip. His blood sugars have been good. He is under
the billi lights for jaundice, his bruising is much improved, and he is less swollen than
he was yesterday. He got a transfusion last night so his hematocrit is good today.
Spent all day hoping to hear about the results of the brain scan, but never heard. An
2/17/04 - Tobias is one day old. His current list of concerns is:
1. His hematocrit is low. Could be due to blood loss during birth or bleeding in the
brain. They will do a head ultrasound to look for bleeding. Bleeding in the brain can
lead to lots of serious problems, so this key to his outcome. The ultrasound should be
2. He has a heart murmur. Depending on the severity of the defect (called a PDA) he
may need drug therapy or surgery. We will have to wait and see.
3. Eyes - there is no telling how well his eyes will develop. The doctors will not begin to
address his eyes for many weeks. Not as important as brain and heart.
4. Blood pressure. He is not maintaining good blood pressure on his own so he is
taking dopamine to help that out.
5. He has a lot of bruising which is likely to lead to jaundice, so he will have to live
under special anti-jaundice lights
6. He is in some pain from all the trauma of birth and probably from all the I.V. and
respirator lines, so he is on morphine.
7. His lungs need help opening up, so he is taking Survanta, a synthetic surfactant.
8. He is on an insulin drip, presumably because of my gestational diabetes.
All of his troubles are typical of those of a preemie, which is reassuring. We are going
to learn to celebrate being average in our house!