Gestation: 39 weeks, 2 days
Weight: 5 pounds, 3 ounces
Feedings: Continuous feeds of HMF fortified milk through a post-pyloric feeding tube on a pump running at 16 ml per hour plus 6 ml by mouth every three hours
Well, the staff decided to wait until today to feed Abby anything by mouth or into her tummy, but we had a full weekend anyway.
Over the past week, Dan and I had noticed that Abby just wasn’t doing very well. She was sleepy all the time. She was moving backwards in her development. She used to be so bright-eyed and noticed everything. She would turn to the sound of Dan’s or my voice. She could look all around and track you as you moved over her from one side to the other. But all of that stopped and she was just sleepy all the time. Even when she was awake she would just stare off in one spot. She stopped sucking on her fingers. Then we noticed that her heart rate was continuing to increase from the low 100’s at rest to high 100’s and even low 200’s at rest.
So on Saturday as I was holding Abby, I was praying for her as I often do while holding her nowadays. Suddenly as I prayed a thought flashed across my mind: “iron”. For the past two months Abby has been receiving iron supplements to fight her anemia of prematurity. When she started getting rice cereal added to her feeds they cut out the iron because the rice cereal was fortified with iron. However, UofM took Abby off the rice cereal and never put her back on iron supplements. As I looked at Abby I started to notice how pale she looked and started thanking God for bringing this all to mind.
I went to find my nurse, but couldn’t, so I found a tech instead. “Is Abby getting any iron supplements?” I asked her, but she couldn’t figure out where to find that information in her charts. So she summoned a resident to come talk to me. A few minutes later the resident came in only to assure me that Abby was getting “the correct amount” of iron just from the HMF in her feeds. I was so surprised that I could only nod and thank her before doing my own research to find that, indeed Abby was getting way less iron than she had at St. Joe’s. In fact, Abby was receiving iron while on HMF at St. Joe’s.
I didn’t want to be annoying to the resident, so I asked our nurse if he could check her latest hematocrit level. Now, in the past Abby’s hematocrit had reached its lowest at around 7 weeks old and then started coming back up. Those who have followed Abby’s progress long enough may remember my saying that if it got as low as 23 Abby may have needed a transfusion. If it reached 20 she would definitely need a transfusion. Her numbers over the course of the past month were 27, 26.5, 24.5, and then back up to 28.3 (measured weekly). Abby’s hematocrit at UofM hadn’t been checked since she was admitted, and at that time it was 27.1. So I asked the nurse if it’s normal for it to decrease.
The nurse spent half an hour explaining to me that Abby is not anemic. She doesn’t need any more iron than she gets from my milk and the HMF. He told me that she had a good color to her skin and wasn’t showing any signs of anemia. I listened, asked lots of questions, and finally thanked him, still unconvinced.
When Dan came back from his walk with Lydia I relayed all of my thoughts, observations, and conversations to him. And he agreed. So when we went back to the hospital we asked to speak with the resident again. Again she came and assured us that Abby was getting sufficient iron. But because we were so persistent, she finally agreed to check her blood count the next morning.
On Sunday morning Abby’s hematocrit was down to 22.8 and she had already received orders to start taking a large does of iron daily. By Sunday night, we were already noticing improvements as Abby seemed more alert and bright-eyed once again.
Today Abby gets to have her first milk by mouth in over a week. The plan is to feed her 6 ml (a little over a teaspoon) once every three hours to see if she keeps it down or spits it up. If Abby tolerates the 6 ml, tomorrow we will increase her amount. If she spits it all up, tomorrow she will probably get another ultrasound to test for pyloric stenosis.
At 11 PM, Abby refused to nurse but took in 2 or 3 ml by bottle. Then she spit it all up. She didn’t seem to have any interest in eating at all, let alone nursing. So it’s really looking like she might be getting an ultrasound tomorrow.
Praise the Lord
-for showing me that Abby needed iron before she was in need of a transfusion
-that God is taking care of Abby especially when the doctors fail
-that Abby will have a conclusive test for pyloric stenosis in the next couple of days
-that, despite the days she’s spent not eating, Abby would quickly “remember” how to eat and nurse
-that God would keep showing us what Abby needs that may otherwise be overlooked
-for Dan and I as we are still struggling with this transition to UofM