We received good news today.
Rylie has been keeping his blood oxygen level up with the CPAP with an FiO2 of 21%, which is the same as room air. Today, the CPAP was removed; he seemed to struggle a little at first, but then he settled down and is doing fine. He is maintaining a blood oxygen saturation of more than 95% on room air and he is no longer on CPAP. He had his feedings increased again today, and he is doing well with that. His bilirubin went back up some, but he has not yet been put back on phototherapy. Rylie seems to be having problems keeping an IV. There has been some discussion of giving him a PICC line. PICC stands for Peripherally Inserted Central Catheter; it is inserted in the arm and then fed up through the venous system until it is close to the heart. PICC line in adults is done regularly and is a very low risk procedure. The doctor seems reluctant to give Rylie a PICC line, so I am assuming that it has a higher risk in babies. The doctor thinks that if Rylie can keep tolerating his feeds, he will not need an IV any longer.
Reese is doing better. She is still getting phototherapy, but her bilirubin has been coming down. She is tolerating her feeds and she gained a little weight today. She is still on CPAP, but her FiO2 is less than 25%. Her doctor says that if she can get down to 21% for 2-3 days, they will try to take her off of the CPAP. She has had a few apneic episodes, but only one of those required stimulation by the nurse.
Ryan is doing better. His FiO2 on the ventilator was 21%, so they extubated him (they removed the breathing tube). He is back on CPAP, but his FiO2 is still high. The doctor says that his blood gases are borderline; they are not good, but they are not bad. If his blood gases do not improve, they may need to intubate him again. He is having thick secretions from his lungs, so they are giving him breathing treatments (similar to what is used for asthma patients). Ryan is tolerating his feedings well. He has not gained any weight yet, but last night he had his first stool; he has been stooling regularly since then. His bilirubin level has come down.
People have been asking when the babies will get to come home. There is no easy answer to that question. There are several milestones that the babies have to pass before they can come home.
The first milestone is that they need to be able to breath room-air, unassisted, and maintain their blood oxygenation levels. Thus far, Rylie is the only one who has passed this milestone. Reese seems to be getting closer, but Ryan still has a way to go.
The next milestone will be the ability to maintain their body temperature without needing an external heat source. Until they can do that, they will need to be kept in warmers. Part of being able to maintain body temperature is dependent on having adequate amount of calorie intake. Right now they are tolerating feedings enough that they are getting close to the point of no longer needing an IV for fluid support, but the nutrition is not yet adequate for them to maintain body temperature.
Another milestone will be the ability to nurse adequately. Right now they are being fed through a tube. They have not yet developed the ability to nurse. When they get to the point that they start to nurse, it often takes a while for the coordination to be adequate. During that time, they will nurse and get some nutrition; but nursing will tire them out, and they will only nurse a small amount each time. During this time, they will continue to need to get feedings through a stomach tube in order to supplement their nutritional needs.
The final milestone will be a repeat of the first milestone, and that is the ability to maintain their blood oxygenation level. They will have to pass what is called the "Car Seat Test." The car seat test is performed by placing the baby in the car seat for 90 minutes; during that time, the baby has to be able to keep his head up, and he has to be able to maintain his blood oxygen saturation for the entire period. Until the babies can pass the car seat test, they will not be able to come home.
Many of you may be wondering how long all of that may take. The best estimate for when the babies get to come home is the original due date of May 14th. Is it possible for the babies to progress faster and come home sooner? Yes, it is, but only time will give us that answer.
When the babies do come home, we will have our hands full. We are wanting volunteers that can come help us out. If you are interested, contact Christy Meinecke for further information.
Brandon is 14 months old
1 week ago