Her name was picked from the very beginning. I didn’t have this with the last baby that was miscarried, but with this one, I just knew her name was going to be Avery Faith, long before I was even told she would be a girl. I just knew. And the few times Eric and I did talk about names, we both liked the idea of giving her a faith middle name like her sister’s Grace, so once I heard him say he wanted to name her Faith, which is exactly what I was thinking, the name was pretty well set in stone for me. But I couldn’t ever get him to really talk about first names with me, until literally the morning we were driving to the hospital. That was when he started talking in earnest, but he finally told me, after me rejecting a few he suggested, that he knew I was pretty set on Avery and nothing he said was going to sway me. He was right. I wanted to hear his thoughts, but she’d been Avery Faith in my mind for nearly nine months, and I was kind of stuck on it.
The hospital stay was a little different this time. With Aria the whole operating room and post partum section had been under construction, so it was much nicer this time. But just as scary. We checked in and were asked the same questions by every nurse, doctor, resident, etc. that would be assisting that day, which was a lot, and the closer it got the more nervous I got. Oh, and because I would need an IV they started trying to get one in. Five tries later they finally did, and I had bruises all around both elbows for about three weeks after.
At one point a nurse asked if I had fallen in the last three months. I asked Eric if me tripping over the baby gate counted. He said, “did you fall?” sarcastically, because he knew I had, and I said, “well yeah..” so the nurse started typing, while muttering, “I wouldn’t have told me that…”
My wrist was adorned with a bright yellow bracelet stating Fall Risk and everything else was too, including my charts, the whiteboard in my room, etc. They wouldn’t even let me walk down the hall to the operating room unassisted, because I might fall. *sigh*
So we get down there, and Eric in his scrubs had to wait while they put in the spinal and got me situated. That was the worst part. The spinal is the most scariest thing in the world, and I had a very vivid recollection of the last time. When we were preparing to go down there they asked me how I was doing and asked why I was so nervous, I told them about the spinal experience from last time and so not only was “the best anesthesiologist in the hospital” there, but her boss, the head one, as well. But like last time, it took a good long while, with them trying to calm me, and another doctor was holding my shoulders, making me rest my forehead against hers and answer questions about my life. It felt like forever, and it probably was a very long time, and it took two tries, but they finally got it in without paralyzing me permanently.
Once I was stretched out and they got the blue curtain up, Eric was allowed in. Then someone decided the IV wasn’t working correctly so they tried yet again and the sixth one was the charm. Right in the crease of my elbow so I couldn’t bend my arm effectively.
This time around I wasn’t shaking as violently, and was able to carry on conversations with Eric, but I don’t really recall what all we talked about. To me, all of the doctors on the other side of the blue curtain were far away. Later it dawned on me they were working on my belly, so were actually very close by and no wonder they kept overhearing what we were talking about and laughing or asking questions about what we were saying.
Finally, a million years later, my tiny little baby was announced with “she’s a peanut!” 5 pounds and 10 ounces. She was born on her due date; based on my period, based on the ultrasound dating, she was right on time.
She didn’t cry. I asked if she was still in there with us, or if they’d taken her away, and they said no, she was still here but just being quiet.
That bothered me. In fact, the last 1/3 of the pregnancy I was bothered. I’m not sure why, but I kept thinking something was wrong. My mom kept telling me I was being overly dramatic, that I was overreacting because of my sister-in-law’s miscarriage at 22 weeks which had been so hard on everyone. So I tried to not worry too much when the baby would have bouts of lots of movement followed by a day or two of very little.
But when Eric brought the new tiny bundle over so I could see her, and she was just so very tiny, despite being full term. Her tiny little head was peeking out of her swaddling, and something inside me panicked. I asked Eric, “is she ok?” He replied she was fine. Why wasn’t she crying?
We were able to have her there with us for a little bit longer before they said they needed to take her back. And before I was done with my surgery they said they had to take her to the nursery.
Hours later, once I was through recovery and in the room where I’d be staying for a few more days, they kept saying they needed to keep her just a little longer. First it was that they needed to warm her up to bathe her, then it was they needed to warm her up from her bath..
She was born just before 3:30pm, but we didn’t see her again until after 7pm. Finally they brought her in with the explanation that she just needed some help getting warm because she was so small (with no fat on her, except in her little cheeks).
Then the pediatrician on call told us that she had a cleft palate. We had known one of her feet would be slightly turned because of the ultrasound halfway through pregnancy. At the time this was discovered they did some tests to determine if it was Spina Bifida. That had been hard for me, thinking about what her life would be like, until we learned that the turned feet were a family trait, most likely not Spina Bifida, and was completely curable before she even began to walk. It was mostly disregarded at this point, and pregnancy had continued as normal.
But now this. I’d never heard of a cleft palate before. I didn’t really learn much about it except that she had a hole in the roof of her mouth, and that we’d be contacted by the Cleft Palate center over at Children’s. At this point no one made much fuss over it, but said we’d have to work with them once discharged.
After that the focus was all on me, helping me recover. I was awoken at all hours of the day and night to be checked, given medicine, asked questions, etc. I was afraid to hold my baby because she was so small and fragile, but I did try to hold her as much as possible. We had visitors, and everything was pretty normal. Maybe all of those fears for her had just been hormones or paranoid new mommy fears. I was encouraged to nurse her to get my milk in, and to work on getting myself up and out of bed.
She had been born on a Monday, and by Tuesday I had a hospital pump to help get my milk to come in sooner because Avery was loosing too much weight and had to be taken to be warmed up a few times.
It was odd because it felt like no one was terribly sure what to do or what advice to give. I was told by several that I should continue to try to nurse her, I was told by the guy I spoke on the phone with at Children’s (for Cleft Palate) that she would never nurse, and I was told to give it a shot by others. I was so confused, and really had my hopes up that I could nurse her, but when she reached 5 lbs 2 oz the Pediatrician started a regimen where she was given formula and her temperature and blood sugar tested every couple of hours.A nurse would come in and prick her foot to test her sugars and the results weren’t where they should be. She kept trying new things throughout that day, including special bottles to help Avery overcome the hole that was making suction difficult for her. The pumping helped, I had milk by Wednesday night, and I even went to the Discharge class they encouraged us to attend.
But Thursday morning a NICU (neonatal intensive care unit) doctor came in and explained that he and the Pediatrician were in agreement that Avery should stay a little longer. We weren’t told how much longer, but that she wasn’t actually going to the NICU but to a special wing where we could have our own room together and she’d be monitored.
I was discharged and the nursers were super nice in providing me things I would need to help me endure at least a few more nights, like pads and whatnot, and I held my tiny baby as we were pushed in a wheelchair down to the second floor.
The room was small, but not tiny, and Avery had her own giant crib and I a little couch, but it also had it’s own bathroom and sink.
The nurse that “registered” us explained how things worked, including that I would be brought breakfast but would get a voucher for lunch and dinner, that I would have to keep a sheet recording when and how much she ate, how long she nursed on each side, what was in her diaper, and her temperature. Our routine also included a blood sugar check before each feeding, so I had to wait for a nurse before I could start to feed her.
I was on my own. Granted, she had monitors attached to her for her heart, etc., but they wanted me to take over taking care of my baby.
Eric went home that night and the next day brought me more clothes and things to get through an indeterminate amount of time. We really had no idea how long it would be, but were both pretty sure it would be by the end of the weekend at the latest.
The NICU doctor came to visit on Friday and said they weren’t really sure what was going on, but that she had to have 48 hours of good temperatures and blood sugar before she’d be discharged. Friday night the nurse offered to take the middle of the night feeding and I very tiredly accepted. By this time I’d given up on nursing because it was just frustrating the baby and, as one lactation nurse finally explained to me, was going to be unrealistic once I got home, to try to take care of a newborn, a toddler, have a life, and try to nurse, pump and bottle feed a baby, which was three times the work and time verses pumping and bottle feeding which would only be double the work I’d grown used to with Aria. I’d settled on one special bottle type that I was comfortable with and so the nurses used it when feeding her for consistency.
8 am the next morning I was awoken by little chirps. My tiny baby was looking towards me from her perch on her giant crib (it was really normal sized, just looked enormous around such a tiny bundle) and making little chirps. I looked at the clock and panicked. The day nurse wasn’t there yet, my baby was hungry, it had been at least four hours which was too long. She had barely been keeping relatively acceptable numbers at just three hours between feedings. It had been much too long. My heart sank and I rushed down to the nurses station and very frantically, trying my best to be polite but incredibly frustrated, explained that they had to test her NOW because I needed to feed her.. it had been too long!
The nurse tried to remain calm, but I could tell she was worried too. She kept talking, while getting the testing device out, and when the first result came back too low, she said, “we’ll be ok” and tested again. My poor baby. But it was too low. The 48 hours started over. I was so upset. I held a grudge. I wasn’t sure if I was mad at her or the night nurse for not passing on the regimen, I was just so upset. I was mad at myself, how had I slept so long? And not to mention who knows what it was doing to my poor baby to go that long without eating.
That afternoon they brought in an isolet, which is one of those incubator things you see in the NICU. It was put at something like 90 degrees and she was stripped down to a diaper, socks and a hat, which was a lot less than she’d been in (add to that one of those long sleeved shirts the hospital puts them in, plus a long sleeved footed sleeper, a swaddling blanket and a full blanket folded on top of her). She stretched out and enjoyed the warmth, and just looked content to finally be warm. I was also encouraged to spend skin to skin time with her. I had been holding her like that when we were both upstairs in postpartum, but now I was so afraid to strip her down for fear of freezing her, but I did and kept her under my shirt, under a few blankets. She was just so tiny with that little head sticking partially out of the top of my shirt.. so tiny and precious.
So Friday when the NICU doctor had visited and didn’t have any answers for us I asked if it would help if he had information about the placenta. I told him my OBG had sent it off to be analyzed; she had told us at the time that she sent it off because it was small, and it was standard procedure. He found the results and was happy that it had been analyzed because it did offer some answers… he told me that it was small and Placental Insufficiency was most likely the cause of her small birth weight. But he was also worried about an abnormal blood flow and wanted to do some more tests.
On Sunday someone came in and took an ultrasound of Avery’s head. That afternoon, when Eric was on his way to visit, another NICU doctor came in and said, very nervously, that they had found calcification in Avery’s brain.
Wait what? She couldn’t tell me what that meant or where or anything else, and I very firmly requested that the NICU doctor that we’d been working with pay me a visit.
Shortly after Eric walked in the room and found me sitting there sobbing. He dropped the items he’d brought me, and asked what was wrong. I told him.
A short time later our NICU doctor walked in with the comment, “my heart breaks for you.” We were both crying as we listened to him explain that something had happened in the placenta, and there were a few known causes for calcification, one of which was the CMV virus. They were going to do more tests, and she’d be followed by the hospital through her infancy and childhood, we’d be given information for Early Intervention, a neurologist was going to see us, etc. etc.
After he left Eric started Googling. He spiraled into a depression over the next day or so. He would come visit in the morning and sit there on the couch with me all day, waiting for more information. The more research Eric did, the more depressed he became. CMV was a crippling virus that would allow her to start out fairly normal, but would degenerate into more and more brain damaged and less functioning child as she aged.
We were going to have a brain damaged, possibly mentally retarded child, with a cleft palate, turned feet, and who knew what else. Out of curiosity I had tried to test some of her reflexes, and she wouldn’t grip my hand, had no startle reflex, and wouldn’t do the stepping reflex either. In fact she wouldn’t even stiffen her legs, she would just go completely limp if you tried to stand her up.
Every night, and periodically through the day, I cried. I spent so many tears over my little baby as I fed her, held her, cuddled her, kissed her.
One night I kissed every inch of her little head while praying that God would heal her, that He would take away the calcification. I had this very strong image of the woman in the crowd who said to herself, “if I could just touch his cloak I’ll be healed” and I thought to myself that if I could just touch Jesus’ cloak my baby would be healed. I was so very sure of it, there wasn’t a single doubt in my mind that God could heal her, I was beyond sure that, given the opportunity, I wouldn’t hesitate to reach out and touch his cloak to heal my child, and I knew she’d be completely healed. But I wasn’t sure if that was God’s will for her. Maybe she was meant to be this way for another reason.
I came to terms with her calcification, although deeply saddened by it, but modified my prayers to include that if it wasn’t His will to heal her, to let her be a light in this world. Let her be named Faith for good reason, that she would strengthen or bring new faith and glory to Him. Let her life be a story of encouragement.
And our family and friends prayed. And they told others who also prayed. We found out that we’d been put on several prayer chains and were being prayed for by so many people. Our neighbors had learned of it and were praying for us and spreading the news so others could pray for us.
My sister said her church was praying for us, and her pastor had prayed that the doctors were wrong.
At one point the doctors told us that she didn’t have any outward signs of seizures, but that didn’t mean she didn’t have electrical ones in her brain, so they did an EEG. They tested her eyes for something, and took numerous blood samples for tests. We waited and continued to pray.
On Tuesday when Eric came to visit I told him I just wanted to get out. I hadn’t been outside since checking into the hospital, and I really wanted to go get ice cream. He found a place across the street so we went. Then we sat in the green space outside the hospital and just sat and chatted.
One of his friends from years ago walked up and saw us, saw the tears on our faces, and asked what was going on. We told her and she started to cry. She had been bringing cookies for the nurses and was very sad for us and said she too would pray for us.
Another thing that happened Tuesday was our sister-in-law Bobbi took Aria with her family to a fair or block party or something, along with another cousin as well. The kids all got Faith stamps on their hands and she sent us a picture of their hands with caption, “Team Avery “Faith”!!” This made me sob, for so many reasons.
During this week we had visitors, including Eric’s parents, his sisters-in-law.. each one would ask if it was ok to visit and I would hesitantly allow it despite my increasing spiral into reclusivity.
Thursday morning one of the NICU doctors came in in a rush, and told me the CMV tests had finally come back, and it was Negative! I immediately called Eric and his relief and joy was palpable through the phone.
Shortly after that they took Avery away for a CT scan that the neurologist had ordered. She was gone a very short while, and it wasn’t much longer after that that the NICU doctor and our nurse came in, with unusual looks on their faces and a computer on a cart. The doctor told me to sit down. I didn’t, I was too nervous at what they’d found, but I did ask if I could call Eric before she said whatever she was going to say.
With Eric on speaker phone, she showed me her computer screen. It was images of Avery’s brain from the ultrasound. She said, “look at these images, do you see all these white spots? These are the calcification.” She had a name for the pattern, with image after image showing whatever this pattern was, which included deep white matter. All that was well beyond me, but I paid attention as best I could.
Then she said, “now look at this,” and opened up the CT scan results. She asked, “do you see any white?… it’s all gone.”
I looked at her unsure of what she was saying. She looked at me and said, “the white spots are gone. There’s no calcification.”
I heard Eric take a huge breath and could hear the tears in his voice. “She’s ok?”
“She’s ok. It’s all gone. She doesn’t have calcification.”
I still couldn’t talk.
The nurse started to laugh nervously and said something like, “she’s speechless!”
I was. I had come to terms with the calcification, that was no longer the issue. I was more worried about what else was wrong with her. To be told that she no longer had it was.. well kind of unbelievable. What sort of joke was this? It was surreal. We’d already started making plans for how we were going to deal with this; I’d lived with it for several days and had held my precious baby, who didn’t exhibit natural born reflexes, and what do you mean she’s normal?
The doctor said she’d never experienced this before and she didn’t know how to explain it.
Finally something clicked in my head and I blurted out, “I know what happened, she’s a miracle baby. Everyone was praying for us and God healed her!”
Shortly thereafter Eric showed up and we were discharged. It had been a crazy 11 days but we were finally going home. Avery’s temperature and blood sugar had stabilized during that time, they were done with testing her, and although the NICU doctor had given me a page full of appointments she’d made for us going forward, along with her personal cell phone in case of questions or help, we were free to go home.
We notified friends and family that the many prayers on our behalf had been answered and received back so many praises to God. It was unquestionable how much glory was given to Him.
And once we were home she started gripping, stepping, and startling as well as any other baby.
There are a number of blessings that have come from this experience. One is that it had been a blessing for me to have that time to heal from the c-section and have time with just Avery before being thrown into the chaos of life with a toddler, and I was torn between leaving behind this isolated life that was a mix of camp and prison and going home to see my precious first born who I hadn’t seen in so long (other than the two brief visits she’d made during that time) and returning to somewhat normal life.
Another is how close Eric and I became during that time. We could spend hours just sitting next to each other, comforting one another, waiting for information. We had deep conversations about what life was going to be like, and how we both hurt, and we hurt for Aria, to have a little sister that wouldn’t be the perfect playmate that we had originally planned. We never fought, we just survived together and we were on the same team.
Now, after the fact, there is the blessing of knowing what we almost endured. When things get difficult because she is difficult to feed with her special bottle and special ways of holding her, or her casts from her feet are obtrusive, or we learn of other complications she has or may have, it’s all in perspective that everything she has now is correctable, and “it’s not brain damage.” We compare everything to that. And we reflect on what other parents are enduring, those that didn’t witness a miracle and still have to live with much worse maladies, those that cannot be surgically corrected. Or cancer. Those are who we should pray for, while we give thanks for our little blessing.
There’s also the ongoing blessing of uncovering other issues. If she hadn’t had low temperatures, they wouldn’t have found the low blood sugar which would have damaged her brain over an extended time. If we hadn’t been sent to the NICU to monitor her, we would not have started to evaluate the rest of her which has now turned up issues that wouldn’t have surfaced until adulthood that can be remedied now before they cause damage.
And lastly, there is the blessing of the glory given to God because our baby was healed and she can now be a living example of answered prayers, and all those people who prayed for her were able to witness a miracle.