Well, Ella couldn’t dress up too much for her first Halloween, but she is one of the most spirited Halloween babies in the NICU.
Ella maintained so well yesterday that they weaned her CPAP again. The pressure is still on 6, but they reduced the oxygen slowly throughout the day until it reached 35% last night at 7:30pm.
She did have one hang up today so far. Her NJ line, which goes directly into her intestines, clogged up. This is the tube they use to feed Ella the Portagen formula. They tried to unclog it, but that was unsuccessful. Then, they removed the line and tried to re-insert a new line. That was not successful either.
In order to make sure she gets her formula timely, they are going to transport her down to radiology. Using the equipment down there, they can be precise with placing a new NJ line. Please pray for a successful procedure.
We got a bit of a spook this morning. The phone rang and it was the credit card company, asking to verify activity on our account. As I listened to the laundry list of charges (all from yesterday), it was easy to see that we had a fraud situation on our hands. They went to Macy’s, Circuit City, Office Max, etc. (all from stores in Fresno, CA).
All of this on a day that is feeling weary for me and Josh.
Thanks for your continued prayers for Josh and his focus at work. Although he worked through the night, he was not able to meet his deadline. He is steadfastly working away as I update all of you, trying to complete his project. For me, it is simply hard to work each day and not be able to spend time with Ella. Although she is down the street 20 minutes away, she is not in a nearby room. That makes it tough.
It is hard to believe that we are on Day 100. As Josh and I had a bible study this morning, it was amazing to look back and reflect on all God has done and how He continues to guide us and protect us. We are so thankful for this new little person that He has introduced into our life. We just can’t imagine it any other way.
Although we “feel” weary, we hold onto the truth in our spirits…that He is ever so close watching over every detail and orchestrating His perfect plan.
UPDATE (4:30PM EST): We just received a call from the hospital. They transported Ella down to the radiology department. To do that, they had to take her off of the CPAP ventilator and place her on a regular nose cannula with oxygen support. She did well during the transition and procedure.
Unfortunately, they were not able to replace the line into her pyloric valve. Apparently, her liver is so enlarged from the pulmonary hypertension, that is has affected the anatomy and placement of the organs in her abdominal cavity. For now, they have continued to feed her through her NG line into her stomach. Dr. Kays will be back at the hospital in the morning and they will consult with him on the next steps.
In the meantime, it is encouraging that they have been feeding directly into her stomach since 4am and she has only spit up once. They have continued to give her medicine for reflux and we are just hoping and praying that she can continue to accept the Portagen formula directly into her stomach.