We were admitted to the NICU. Marley was administered an IV line and had lots of labs drawn, resulting in several blown veins. We met the geneticist that morning at 8 am, and she was wonderful. She listened as we told her all about Marley’s first two weeks of life, and she took the time to explain Marley’s newborn screen results to us. Since her first screen did not flag with major elevations, she told us that either we could be dealing with something very serious, or it truly could be an anomaly, and that the pending lab results would give us more information. Unfortunately, the labs had to be sent out, so our wait began. 

As we waited for lab results, I was nursing and pumping, bonding with my new baby, and hoping my milk was good for her. I checked continually to see if labs came back and prayed that the results would be normal. I was really missing our oldest, Addy Rose, but remained hopeful we’d be going home soon. 

This would be another day of waiting for lab results to come back, full of constant monitoring, worry, and not enough sleep. Dalton went home and packed our bags (since our stay was becoming longer than expected), loved on our dogs (thanks to our wonderful neighbors for helping with them!), returned to the hospital, and got me outside. We ate lunch, rocked on the bench, and I fell asleep; I had needed the fresh air more than I realized. We were both exhausted physically and emotionally. Our sweet little baby continued unable to hold her temperature on her own but did eat very well. There was still so much unknown at this point!  

Late the night before, one of Marley’s labs came back. It showed an extremely elevated homocysteine level. It was 200, and we were told that the normal range is around 4-15. This led the team to believe that she either was deficient in b12, or that there was something more serious going on. They wanted to check and see if perhaps I was a b12 deficient (which would’ve been the best possible outcome), so they sent me off to get labs as well. Regardless of my pending results, they planned to come in at 9 am to begin to administer b12 injections to Marley. It was midnight when they informed me, so I texted my husband, overwhelmed but relieved that we had somewhat of an answer and plan. They basically told me that if she needed the b12, the injections could save her from going into a metabolic crisis, but that if she didn’t need it, that it wouldn’t hurt her.  

Before talking to her geneticist that morning, I looked up what I could with the little information I had. The geneticist told us that we still had a spectrum of things to rule out; that Marley definitely had something deeper going on and the additional labs would help to narrow it down. She stressed the importance of continuing the b12 shots, as they could potentially prevent further harm. Marley was still eating so well but ended up losing 20 grams of weight that day. That night, she had bath time with one of our favorite nurses. Thankfully, pieces of the puzzle were slowly starting to come together, but there was still so much unknown.

A day of overwhelm and emotions! I was really missing our older daughter Addy, and I had to leave Marley for the first time since she was born to go get my labs drawn. It was nice to get out of the walls of the hospital, but very hard to leave my baby girl for the first time. I also felt mom-guilt and wondered if everything was my fault. Did I have a b12 deficiency and just not know it? Was I not eating good enough while pregnant, and caused her IUGR (intrauterine growth restriction)? I had so many questions and so many emotions. Dalton and I went to get my labs done, grabbed a few things at CVS, picked up lunch, and then went back to the hospital. 

Marley still wasn’t gaining weight. At birth she weighed 5lb 12oz, but at this point, she had gotten down to 4lb 9oz. One of her doctors made me feel like I wasn’t feeding her enough, which really put me in a hard place mentally. She was nursing great every time I fed her, the extra milk I was pumping was fatty, and I was building up a stockpile. We even had speech come in to do an evaluation, to make sure that this wasn’t all caused by a feeding issue. Our lovely speech therapist watched her nurse and drink from a bottle. We tried several different ones, because she was a sloppy eater, and had a possible lip tie, but my supply and her latch were not an issue. She was definitely getting the milk she needed. 

Later that day, the doctor on call looked over and assessed Marley’s whole situation thus far. She said she thought her feeding was perfect and said her weight gain and body temperature issues could truly be due to her needing the b12. That morning was only her second shot of b12, and they originally said we’d hopefully see some improvements within a few days. At this point, we just needed more time to get results and see what her body was going to do. Deep down I felt that the b12 injections could be just what Marley needed. She was wiggling around some and was more vocal that evening, and she’d never been like that before. I wasn’t sure if it was just me hoping and praying that it was helping, or if it actually was bringing her back to life. 

In addition to all that was going on, Marley’s geneticist was attending a virtual conference that week and shared that it would be her last week at the hospital; she was moving up north to be closer to family. We were sad to hear the news, but despite her moving away, she remained a presence in our lives. She called and talked to me every single day. She wanted updates on how Marley was doing (from me personally!) and wanted Dalton and I to know that she was not going to leave us alone until she could give us some answers. Even today, it makes me want to cry thinking about it. She checked Marley’s lab results every day, and even called the lab in Utah several times to bug them, because one of the labs had gotten lost. She was AMAZING! We were super sad to have met her and to be losing her all in the same week. She was a huge part of the beginning of our journey. 

After sitting on it for a few days while waiting for lab results, and reaching out to another doctor, the geneticist brought her college textbook in, sat us down, and showed us exactly what she was thinking might be going on. She even drew us a picture, so that we could really visualize what she thought could be going on inside of Marley’s cells. That day started our learning and teaching journey! 

That night we added Betaine to her regimen, along with a few other medications. Her geneticist also ordered more labs to be drawn the next morning to determine if the b12 was working. Dalton and I knew it was indeed helping her, before any tests were even run; she was turning into a different kiddo! Marley also gained an ounce that day. It was like she was coming back to life right in front of us.

3/24/22
Marley’s b12 lab came back and showed that she was not deficient, but her Methylmalonic acid (MMA) lab had a massive elevation. The MMA and homocysteine elevations ultimately showed, without yet having the genetic testing to confirm, that she had an inborn error of metabolism. Now we were most certainly looking at a metabolic disorder instead of just a b12 deficiency. This was one of the worst-case scenarios that our geneticist first presented to us, but we were encouraged by the fact that she seemed to be responding well to the b12 injections. We didn’t have proof that the meds were working yet, as we were waiting on her next set of labs, but we couldn’t ignore the fact that Marley was starting to act like a true newborn baby who wiggled, made noises, and reacted to our voices with facial expressions.   

3/25/22
This was another slow progress day, full of prayers that Marley would start gaining some weight and maintain her temperature without help from the warmer. She was not quite back up to birth weight yet but was starting to gain little by little. We were celebrating grams at this point! 

3/26/22
That night, we weighed her three times, just to make sure we were getting it right. Her first weight was 2440g, and the second two were 2450g. We took 2450! Our nurse had no idea, but that number was extremely special to me. It is my Memaw and Pawpaw’s house address. I knew that it had to have been Memaw giving us a little wink from Heaven, and I sure needed it that day! 

One of Marley’s repeat labs also came back that day. Her Homocysteine level had come down to 63, (from her original 200!). This was extremely exciting, as it showed that the b12 and Betaine were working for her! I ended up diving into some heavy reading that night, to learn more about what Marley’s condition.

3/28/22 

Step one towards getting Marley home happened that morning. They popped the top off of her incubator, and we were free to pick her up any time we wanted! In order to be discharged from the hospital, she would have to maintain her body temperature and continue gaining weight for a couple of days. The end was starting to be in sight! 

3/30/22
Two weeks into our NICU stay, and after a few successful days of weight gain and maintaining her body temperature, we were discharged from the hospital. But first, we were trained on giving Marley daily injections of Hydroxocobalamin, measuring and administering betaine, along with the couple of other liquid medications she was initially put on.