I'm going to start today's post with my thoughts from story time with Tera. When I first began reading this book to her, I noticed how far into the distance "Praying for Physical Health and Safety" seemed to be. Well, it finally came today and could not have come at a more perfect time. I'll explain why later. The chapter opened up with a discussion about the author's young daughter. In an early ultrasound during pregnancy, the doctors found a cyst on her brain. Of course, her parents were devastated, but the cyst disappeared on its own, and the child was born perfectly healthy. Over the next four years, the child accumulated more bumps and bruises than Canon. It always seemed that physical pain followed her wherever she went. When her mother prayed about it, she asked why God was not providing her daughter with the protection she had so diligently prayed for in the past. His answer came to her like this: "I am protecting Virginia. In fact, I've had to put some of my best angels on the job, just to keep her alive!" I immediately thought of Canon again. With his lack of coordination and balance, not to mention his naive and sometimes too-easy-going parents, God's best angels must be watching over him.
The next section of the chapter was written especially for me and Tera. It tells of a mother whose son was diagnosed with a usually-fatal illness. The mother prayed the same prayer as most mothers would: God, why is this happening to us? Was it something I did or did not do for him? I have asked these questions myself multiple times in the last 27 days, especially the ones about what I must have done wrong. A baby can't do this to herself. Surely I ate too much chocolate or lifted something too heavy. What else could it be? After this particular mother prayed her prayer, she sat down to do her Bible study. That day's lesson was from John 9, a parable that involves Jesus' disciples asking why a blind man was blind. "Who sinned, this man or his parents, that he was born blind?" Jesus' answer brought tears to my eyes on this particular morning: "Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life."
My sister-in-law, Leslie, told me the other day that when she read one of my earlier posts - about praying for your child's gifts - the thought occurred to her that this experience is Tera's gift. She has been such an inspiration to so many people (myself included) and she's not yet one month old. What Leslie (and Jesus) said is so true. This is happening so that God's work might be seen and used by others, even those who see and use it everyday. He is doing something great in and through her life. By the way, the little boy in the story did not die. As it turns out, he only had a kidney stone.
The last part of the chapter was written for Barry and myself as it deals with God answering our prayers for our children. Berndt listed several pieces of scripture here. These two are most notable: "Call to me and I will answer you" Jeremiah 33:3 and ". . . the promise that I make does not return to me, having accomplished nothing. No, it is realized as I desire and is fulfilled as I intend" Isaiah 55:11. As our days bounce back and forth from good to bad to better to worse, it is important for us to look at the big picture and not simply what is happening in this moment or that. It's like Tera's weight gain. To gauge it from one day to the next would be nerve-wrecking and mind-boggling. But to consider it over a week's time shows a truer picture of her progress. In the same way, God's promises are not withheld on one day and freely given on another. Over the course of time, His sights are set on a big picture that will become clear to us when that time is right. We have two prayers tonight. For Canon: "Let Canon take refuge in you and be glad; let him ever sing for joy. Spread your protection over Canon that he may rejoice in you." Psalm 5:11. And for Tera: "Let Tera lie down and sleep in peace." Psalm 4:8.
And sleep in peace is what Tera eventually did today, after she remembered to breathe, of course. It started about 5:00 this morning when I called the nurse for the second time since leaving her last night. She mentioned that Tera had quit breathing (apnea) several times during the night. Because of this, she was de-satting a lot and her heartrate had gone down (bradi) several times. They were going to run some tests to try to find out what the problem was. She called me back about 7:15 with more news. The pediatrician was with her and needed my consent to do a spinal tap to get a culture for a blood work up they were doing to find out if she had an infection. They would also send off urine and blood samples. These samples will be watched over the next five days to determine what kind of infection, if any, Tera has. Some other tests were run earlier in the morning, and her CRP (I'll find out what this means later) showed that she had some kind of infection somewhere in her body. They put an IV in her head so that they could go ahead and start two different antibiotics. No need to wait around to see if the infection exists when they can start fighting it off immediately.
With all of these potential problems, the confusion seems to be in the fact that Tera still looks so good. She's pink (not blue), she's gaining weight (but not swollen). She just can't seem to remember to breathe. When I got to the hospital later that morning, the nurse and I predicted that Tera would be back on the CPAP and up in the RNICU before the end of the day. For the first hour or so that I was at the hospital, Tera quit breathing about every five to ten minutes, sending the nurse in and out of the room like a revolving door. As soon as the nurse would get her oxygen saturation back up (which was taking longer and longer each time it seemed) and walk out the door satisfied that Tera was stable, Tera would quit breathing again, sending the nurse rushing back through the door and reaching for the blow-by.
After getting all of Tera's ailments and medications retold to me when I arrived at the hospital this morning (remember, I have to hear it at least twice before it sticks), I texted Bob to see if he could come down for a quick evaluation. I'm so glad he could come. He was really happy with how everything looked. The increased oxygen in her tank (now up to 45%) was still not any cause for concern, and he was very impressed with how she looked. Her looks seem to be a big deal to everyone here! He walked me (again) through everything that was happening and ensured me that they were doing everything right. The antibiotics were great to prevent any further infection. The apnea is "normal preemie stuff" and will resolve as she gets bigger. The only thing he suggested is that, if for some reason she does get so bad that she needs to be put back on the CPAP, he would recommend having another echo to see if the PDA has reopened. We kind of consider it as "nonexistent" until it starts causing other problems. These other problems could be in our midst now.
Can't you tell how much bigger she's getting? She gained three ounces last night!
It was amidst all of this chaos (and before Bob arrived to reassure me) that Tera and I read today's chapter. You can imagine both my overwhelming emotions and my ultimate relief when I read how the woman used her son's experience as a means to glorify God. Many people have reminded me that this is what Tera is doing, but I needed that reminder today.
Soon after Bob left, Tera began evening out. Her apnea episodes became less and less frequent, and the nurse finally got a break to take care of her other babies. The pediatrician came in soon after and discussed further everything that was going on. Basically, the infection (whatever it is - either bacterial or viral) seems to be causing the apnea. As soon as they get the preliminary readings on the blood, urine, and spinal cultures (probably tomorrow, possibly the next day) they'll know if the infection is bacterial or viral. If bacterial, the antibiotics should clear it right up within a few days. If viral, there's not a lot to do but just let her ride it out. The doc feels confident that she just has a "little bug" because, again, she looks so good. I was able to ask plenty of questions about the possibility of going back on CPAP (not worried about that right now), what caused the infection (probably something simple like the IV pokes on her arms), and whether or not weight gain had anything to do with it (probably not because we still don't know if her weight gains are even accurate - again, look across the whole week, not day-to-day). I also talked to her about the drama of last night - Tera's double-de-sat-with-no-response episode that still has me in a tizzy. She suggested that we move to a different room (the Vocera's don't get a good signal in this room anyway) and she would talk to one of the Neonatologists that might know something about it.
This is our reasoning for being concerned about the CPAP. Here is Tera getting ready to take a breath (look at her ribs).
And here she is in the middle of a breath. It looks like she's struggling just a little bit, I think because of how much she has to suck in to get the oxygen. It's good for her to work at it a little, as long as it's not making her condition worse.
By the middle of the afternoon, we were moved to our third room on this floor (I'm sure we're earning ourselves a reputation here) and got resettled. The nurse manager came by to talk about the Vocera receptivity. I asked her if she knew about last night's incident, and she did not. I'm not sure why, but no one had reported that Tera had de-satted twice without notifying any of the nurses on the floor. After hearing every question, concern, and comment I had on the subject (which took me quite some time to get out), the Nurse Manager ensured me that she would figure out exactly what (or who) the problem is and get back to me with the results. Poppa told me later he was proud of the way I handled it. It's easy to talk to people about your problems when they really want to listen and try to help you. I feel better about it already.
Nonna and Poppa left then to return to Lydia, who was at the hospital down the street. Lydia had knee surgery today, and the horrible sister-in-law that I am didn't even make it out to visit her. Nonna and Poppa had been at St. Vincent's with Lydia early this morning, then came to see Tera once Lydia had made it back to her recovery room. I left soon after they did to eat dinner with Hill and Amanda, super close friends of ours. We ate on their front porch which was especially great. There are many days that I get so caught up in Tera's condition that I literally forget to go outside. While I did manage today to walk a couple of blocks with Nonna to get some lunch, then scarf it down on a park bench outside the hospital so that I could get back as quickly as possible to my tiny baby, dinner on the porch tonight was much more relaxing. It was a peaceful close to a very eventful day.
After leaving their house, I called in to the hospital instead of going there myself because . . . dum dum dum . . . I now have pink eye!
What About Barry and Canon
I talked to Barry quite frequently throughout the day due to all that was happening with Tera. Of course, he wanted badly to come up and be with us but decided against it. He'll be up on Wednesday to spend the night before going on to Nashville for a hospital thing on Thursday. Once Tera settled down, our usual weekday speaking patterns returned. I did manage to get out of him that he and Canon played at Miracle Park after he got off work today. Miracle Park is a playground that has special ramps and activities for all children but especially those with various special needs. They have music stations, areas focused on textures, a sandbox, and the usual slides, ladders, and swings. It is one of Canon's favorite places in Dothan, and he will wear himself out before fighting us to get him back in the car to go home. I was able to do FaceTime with my boys before Canon went to bed tonight. I was still at Hill and Amanda's at the time, so they got to talk to him, too. He asked several times for Baby Tera and was disappointed that I wasn't with her so that he could see her. I'm so glad that he already loves her.
Tera is so lucky to have such a devoted mom! You are her angel!
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