The Kovar Khronicles: Macie in the NICU: Week 3

Macie followed up a great second week with a good third week too. Every baby has to meet three milestones in order to come home from the NICU. They must be able to breathe on their own, although some babies do come home on cannulas or with instructions for apnea. They have to be able to maintain their temperature to be warm in a room air setting. And they have to be able to eat sufficiently on their own to grow, although some babies do come home on feeding tubes. Of course there are other scenarios that can occur with preemies, but these are the basic three criteria. At the end of week two Macie had met the breathing criteria, was making process on maintaining temperature, and was nearly ready to begin working on nipple feeding. So during week three the focus was on maintaining temperature and non-tube feedings.

Macie was gaining weight steadily, which prepared her to work on maintaining her own temperature. Last week I wrote that she had been transferred from her giraffe bed to a standard isolette. Two days after moving to the isolette, Macie successfully maintained a normal temperature with the isolette set at 28 degrees Celsius. 28 degrees represents the closest they can get to average room temperature. Because she was able to maintain a normal temperature for more than 12 hours at simulated room air, she was moved into an open air crib on Monday. For the next 24 hours they monitored her closely to make sure she was doing well. She did have to go back into the isolette briefly on Tuesday morning, but after that was successful and made a permanent move to her crib. The isolette was wheeled out of her room on Thursday. The nurses had told us that this milestone was one that Macie would just do when she was ready... turns out that they knew what they were talking about!

Feeding is taking a lot more work than the second milestone, as we expected. Macie had worked her way up to full size feedings by the end of week 2, but was receiving them all through a feeding tube. Because she was still having frequent respiratory escalations, we were unable to start teaching her how to eat from a nipple. If we would have tried, she would likely have choked and sputtered too much. Additionally, Macie was often not alert at feeding time. One of the keys that the nurses look for as a sign of nipple feeding readiness is that the baby will be alert at feeding time and queuing that she is interested in eating via mouth. On Saturday this week, Macie had a sudden drop in the number of respiratory escalations she was displaying. The doctor on staff felt that she may be ready to start trying to nurse or bottle feed. Macie happened to wake up before the feeding when I was there on Saturday and was sticking her hands in her mouth. When I picked her up she started rooting. So we tried nursing for the first time. It wasn't a great success. Macie was not able to latch, but she was excited and showed a lot of interest. On Sunday we tried again. Macie was able to latch three times, but only for a brief moment. She was successful at getting a few drops of milk, but nothing more. Preemies are learning how to differentiate between their eating and breathing tubes. Often times they are not able to breathe well while they are sucking and swallowing. So they need to take frequent breaks to catch up on their breathing. When Macie was taking these breaks, she was losing her latch and then had a hard time getting back on. We tried again on Monday with similar results. Finally on Monday our efforts registered a very slight weight gain. Macie got 3 cc's of milk nursing that day. She needed 42 cc's to achieve a full feeding, (her feeding volume was moved up on Sunday due to weight gain.)

Also on Monday, Macie started waking more frequently before feedings. Her nurse called me in the morning to ask about our opinion on bottle feeding. Andy and I had discussed this at length, and made the decision that bottle feeds would be necessary. Because of our circumstances and schedule, we are only able to be at the hospital for one or two feeding sessions per day. Macie just can't meet her feeding goals with only 1-2 practice sessions a day. The nurse fed her first bottle on Monday at 11:30am. Macie finished all 42 cc's on her first try! We were there for her 2:30pm feeding, where she got only 3 cc's nursing. I fed her a bottle afterwards and she was able to take the remaining 39 cc's successfully. She was a natural. The nurses showed me how to hold her head tipped to the side when giving her a bottle. This allows the milk to pool in her cheek instead of forcing it all to the back of her throat, and helps prevent gagging. They additionally showed me how to empty the nipple during her breathing breaks and how to hold the bottle like a pencil at the top so that Macie would not have to bear the weight of the bottle. Feeding a preemie is a lot more involved than a typical newborn! Beginning on Tuesday, Macie was taking every other feeding by bottle. I felt like it was a fantastic start! On Tuesday I also tried using a nipple shield during our nursing session, which makes it more like the nipple of a bottle and therefore easier to latch, detach and relatch. Macie was able to pull 14 cc's nursing that day. The next day she got 18, a full third of her feeding. Our timing was off on Thursday, and we were not able to make an attempt. Instead, Andy was able to hold her during a tube feeding for his first time.

On Sunday the doctor on staff, Dr. Conrad, came in to speak with me while I was visiting Macie. He explained that her second PKU test, which is the standard Washington state screening done on every newborn, had come back with an anomaly. Macie's results showed that she may have a condition called adrenal hyperplasia. Normal practice is to do a repeat screening to verify the results. They did a third PKU test on Sunday and sent it into the state, along with some extra blood to test her electrolyte levels for another indicator. The results should come back early next week. At this point we are not very concerned. These tests pick up more false positives than most because they are trying to catch every baby that might have one of the genetic conditions screened for. If the third test comes back with the same indicator additional screening will be done. If Macie has adrenal hyperplasia, it means that both Andy and I carry a gene for the condition. It is not a terrible condition and is easily treatable.

The neonatologist at her delivery, Dr. Lawson, came in to talk to us on Monday. He said that they were all very pleased with her progress. He confirmed that she simply needs to learn how to eat in order to come home, and estimated another 1-2 weeks for her to achieve this. We are so happy that her homecoming is getting closer!

Here are a couple of other things that happened this week:

Andy held Macie for the first time.

Macie wore her first outfit.

Charlie and Ephram came to the hospital on Saturday to meet Macie for the first time. We had delayed this meeting because of her fragile condition and all of the equipment surrounding her prior to this week.

Macie matured to a new preemie stage that includes more alert periods. We had time periods between 20 – 60 minutes where she was awake and interacting with us to a degree.

Dr. Lawson ordered her pulse oxygen saturation monitor be removed, as she had maintained sats consistently since being removed from the ventilator with very rare dips to the 80's. Macie now only has the leads to monitor respiration rate and heart rate – things that every NICU preemie has.