It's taken me pretty much Lorelei's entire first year to deal with what happened surrounding Lorelei's birth and her first month of life. It's been on my mind and heavy on my heart this week. Some of you know the story, a lot of you don't. I thought putting it into words might help, so here it is...
Sometime around midnight on Saturday, October 15th, my water broke. Aaron and I panicked! It was the first weekend of the kids' fall break and both of our back up babysitters (lined up incase she came before my scheduled c-section) were, of course, out of town.
After scaring our neighbors half to death by ringing their doorbell, and frantic calls to the Doctor, our amazing friend, Becki, and my mom, we were on our way to the hospital.
They checked me in and told us they were going to try to hold off my c-section until 9am since I had taken my shot of heparin at 9pm. So Aaron left me at the hospital and went home to relieve our neighbor until Becki arrived. It was a super long night of contractions, medication to stop the contractions, going back and forth with 'call your husband, we're doing it now' to 'here's some more meds, hang in there'. Becki drove straight through the night from Michigan and arrived at our house about 6am! (Is she amazing, or what?) Aaron got back to the hospital about 6:45 and they decided I couldn't wait anymore. The c-section was actually my easiest, I think. The anesthesiologist was amazing, and the doctor was great too, even though she wasn't my doctor. Lorelei's first apgar was pretty low, but by one minute she scored a nine. She was breathing great considering she was 4 weeks early and she weighed a whopping 7 pounds 5 ounces! She definitely didn't look preterm.
As hard as that was, we had no idea what was in store for us. I spent that night in my room praying, going up to the nicu every few hours to feed her, and NOT sleeping. The next day we spent in the nicu, thinking she would be going home the next day. Sometime that night, maybe around 10, but I don't remember, a neonatologist came in and told us that her newborn screen had come back showing she had VLCAD. He pretty much just handed us a printout from a webpage and knew nothing about this condition.
So what do 2 parents with smartphones do? We went to google. BAAAAAD idea. The internet gave us a ton of scary information. Probably the scariest being that VLCAD has a 80-85% infant mortality rate. We spent that first night scared to death. No one knew anything. The nurses didn't even know what VLCAD was!
The next morning we met an amazing neonatologist, Dr. Cohen. As soon as he came in the next morning, there was a plan. It was scary, but at least he seemed to know what he was doing. They started taking Lo's blood sugar every 3 hours, she wasn't allowed to go more than 3 hours without eating a specified amount, she was hooked up to a Holter monitor, had a chest x-ray and an ultrasound on her heart and had an EKG. Then they drew a ton of labs to send out, if I remember right it was somewhere between 60-80 tests! They drew so much blood they had to take it out of her femoral artery.
At this point she was down around 6 lbs. Feeding her was so stressful. She was so lethargic, it was hard to keep her awake to eat. We would strip her down, wipe her with a damp cloth, tickle her, all to get her to eat. We weren't allowed to snuggle her while we fed her. It was all business. It was scary to think that if I couldn't get her to eat she could go in to metabolic crisis and get very sick. When she spit up we would worry about how much volume she was losing. If she didn't want to eat I would panic. Then the nurse would take her and finish her bottle, then tell me that they would not let me take her home if I couldn't get her to eat.
I never got to just hold her. Until one day I was finishing feeding her. I was hooking her back up to her biliblanket, her heart monitors, her pulse oximeter...I had just finished swaddling her when my favorite nurse, Krista came in. She said "why don't you just sit and hold her?" I hadn't been given that option before. I undid her swaddle and tucked her in my shirt for some kangaroo care. Probably the best hour of the entire ordeal!
Test results started to come in. They were all consistent with VLCAD. Dr. Cohen was totally convinced that she had VLCAD. Her symptoms were textbook. He had Aaron convinced too. I was less willing to take the doctor's word. I tried my best to remain hopeful. I prayed constantly that God would give her strength. That He would give me strength. That He wouldn't take her from us. I grieved for the baby I was supposed to have. I grieved for the life she wouldn't get. I wondered if she'd ever get to be a 'normal' kid.
Maybe one of the hardest parts through all of this was that Aaron and I weren't together. He was home with Amelia and Elliot. I was at the hospital with Lorelei. I couldn't drive so I was pretty much stuck there. Not that you could have drug me away.
At 10 days old, we finally got to take Lorelei home. For a very stressful 36 hours. We spent the evening snuggling her on the couch.
The next two days it was back to the same routine. IV's, photo-therapy, blood sugar checks, EKG. They made us switch her to formula. They let us go back home Sunday. She was 2 weeks old. Then we just had to wait for her test results. We had to stick to a rigid routine of feeding her every 3 hours. She HAD to get a certain amount. We couldn't hold off her feeding if we were out. Our lives were planned around her feeding schedule. We had to go to the doctor every day to have her weight checked. When she was 4 weeks she finally made it back to her birth weight. At four and a half weeks we met with the genetic counselor because they had gotten most of her test results back. At that appointment they were able to tell us with 99% accuracy that she did not have VLCAD. We still had to wait for her DNA results, but we were pretty much in the clear. It's crazy, but I didn't know how to process the news. I didn't know how to treat her like a normal healthy baby. To be honest I still don't. I still get a little panicky if I think she's getting sick. If one of the other kids get sick, I still think 'what if Lo had VLCAD?'
At 5 weeks, her DNA results came back that she had no mutations. She is most likely not even a cariier for VLCAD. It was a false positive on her newborn screen. She is perfect. Healthy. Everything we prayed so hard for.
We like to joke that she ate that little sick baby. She's such a chunk. You would never know by looking at her that she had such a hard first month. It still weighs heavy on my heart, but she will have no lasting memory. No evidence of that time. But I don't want to forget. I feel like I wished away that first month just waiting to know the test reults. There aren't many pictures.
