Macie in the NICU: Week 2

Macie's second week in the NICU was much better than her first.  We had a positive trend throughout the week.  Interestingly, I found that my emotions were more intense this week.  Once Macie was through the most intense part of her recovery, I finally processed everything that had happened.

Macie continued to breathe room air, without any assistance from the cannula, since she was taken off of it.  She still breathed very rapidly at times and had some retraction take place.  The doctors told us that would improve as she continued to heal.  Her chest tube wounds were healing nicely with no sign of infection.  We were thrilled that she was able to maintain her blood oxygen saturation levels in the 90's without any extra flow or oxygen assistance.  The tabs for the cannula remained on her cheeks for most of the week.  Once they were removed we were happy to finally see her face.  She's a pretty little girl!

Macie still had slightly elevated bilirubin levels at the end of the week, which is the indicator for jaundice. Her levels were not high enough to be of concern and were considered normal for her weight and age at that point.  She did spend one more day under the blue lights as a precaution, but we did not anticipate her needing them again.

Feeding was our big focus during the week.  When they fed Macie it was through a tube that was first down her mouth, because of the nasal cannula, but was then moved to her nose after two days of no cannula assistance.  They gave her time to digest the milk and then, before her next feeding, would pull back from the tube to see if there were any residuals that had not been digested.  Macie had a ton of air in her stomach, which also impeded her digestion.  In the first days they were pulling back residuals of 5-9ml after only giving her 2ml to start with.  That is why they were not able to advance the amount of milk she was receiving.  Once she was finally of of the morphine, her body was better able to process the milk.  She also started stooling regularly.  On the first day of week 2 they were able to advance her to 9ml per feeding.  She tolerated it well so she then went to 16ml the next day, and 23ml the following day.  At 23ml they began fortifying the milk with a Similac formula that basically adds extra protein to help her gain weight.  With that, they were able to take the fat emulsion off of her IV.  When she hit 30ml, which is an ounce, they were able to take her off of her nutritional IV fluids.  That day her PICC line was removed as she was completely IV free.  Our little girl that had been attached to every piece of available equipment was suddenly only attached to leads that measured her heart rate, respiratory rate and oxygen saturation levels.  It was such a relief to know that she was free of all of those other things. We had been wary of infection with each thing that needed to stay in her body longer than a few days, and we luckily had no infections to deal with.  That same night they moved her to 35ml feedings, and the next morning she reached her full feeding of 38ml.  She only had to skip on feeding during the rest of the week due to a large residual.



Feeding is a task that we will be working on for some time.  Macie continued to have a lot of air in her tummy and spit up little amounts after most feedings.  One time she threw up, but it was her first morning feeding and she had no more issues that day.  The speculation was that she might have reflux, as did Ephram.  She still received her feedings through a tube.  It is connected to a pump that distributes her feeding over the course of a half hour.

When we were there I held her during the feedings.  She started to show the very beginning signs of wanting to nurse with some rooting.  However, as long as she had frequent rapid breathing spells, learning how to eat through her mouth would be a challenge.  Preemies have to learn how to differentiate between their breathing and drinking tubes.  Because Macie often had to breathe very fast to maintain her sats, she would likely choke and sputter if we tried to feed her.  We were not able to start nippling during this week and hoped for progress in week 3, but it was truly all up to her lungs.  In order to come home, she must know how to breast or bottle feed, so this did delay her homecoming.

We started to work on another homecoming milestone this week as well, the ability to maintain her temperature.  During the weekend Macie struggled to keep her body warm and needed the ambient temperature in her bed to be turned up and to be covered by a blanket.  By Tuesday that started to improve, which was likely because of her success in taking larger feedings and the accompanying weight gain.  They began lowering the temperature of her bed gradually.  At the end of the week they were able to transfer her from her giraffe bed to a standard isolette, with the temperature set at 29.5 degrees Celsius.  28 degrees Celsius is room air temperature.  Once she reaches that and can maintain a normal temperature for 12 hours, wearing a onesie and covered with a blanket, she will get to try a day in an open air crib.  If she is able to maintain her temperature over 12 hours there, she gets to stay there. 

Other things that happened this week:

• Macie got her first binky and enjoyed sucking on it at night and when she was upset.
• Macie's weight increased to 4lbs 6oz.
• I held Macie every day during the week for time periods spanning between 30-75 minutes.  The first couple of days she fussed during transitions, but appeared to know me well after that.  She would snuggle right in and go into a deep sleep.
• Macie was moved to a third room because of an issue with the plumbing in her room.  She became a resident of room 4141.
• Easter was this Sunday.  When we went to visit her I promised Macie that her next holiday would be a bit more exciting.

We expected Macie to be in the NICU for another 2-3 weeks.  At the end of the week, Andy and I started to get busy in our preparations to bring Macie home.  We needed to research and purchase a new car seat because ours was too big for her.  And, because she came so early, we hadn't yet prepped the house.  We needed to do simple things like bring the swing and the bouncy seat in from their storage spots.  We were in the midst of moving Ephram into Charlie's room, (our initial goal was to complete that in March - which is when everything happened,) and turn Ephram's room into a little girl's nursery.  We went to the hospital every day for about four hours.  We wanted to spend more time with her, but also needed to care for the boys and help them feel stable after all of the commotion they just survived.  Additionally I continued to have medical issues which required a substantial amount of medication, and it was not safe for me to drive or to be alone.  At night I ached the most to be with Macie, and when we were with her I worried about Ephram and Charlie.  There was not a good solution, and I looked forward to a time when we would all be home together.