If youâre reading this because your baby is in the NICU, Iâm so sorry. I know exactly how terrifying it is because Iâve been there. I remember spending hours searching Reddit, Google, and Facebook groups looking for stories that sounded like ours because I just wanted someone to tell me that their baby had been through something similar and ended up okay. Those stories helped me get through one of the hardest times of my life, and now that weâre on the other side of it, I wanted to share ours in case it helps another parent whoâs sitting beside their baby feeling just as scared and helpless as I was.
This was my first baby. I was 40 weeks and 4 days pregnant when my water broke. Since Iâd never done this before, I had no idea what to expect, but one thing immediately stood out to me. The fluid wasnât clear. It had a yellowish-brown color to it, and I couldnât figure out why. I asked my mom if that was normal, and she told me her water had never looked like that when she had me. We decided it was best to call Labor and Delivery, so I did. They told me to come in, and once I got there they examined the fluid and explained that it contained meconium, which was causing the discoloration. Even with the meconium present, they were comfortable allowing me to try for a vaginal delivery, which is what I wanted. They started me on Pitocin because my contractions werenât progressing very well, and after laboring for hours I had only made it to about one centimeter dilated. Because labor wasnât progressing and my baby had already been sitting in meconium for quite a while, they recommended a C-section. We agreed, and before I knew it, our beautiful little boy was here weighing 6 pounds, 15 ounces. To us, he looked absolutely perfect.
For the first 24 hours after he was born, everything seemed completely normal. We were soaking in those first moments as new parents and had no reason to think anything was wrong. Then they came in to do the routine pulse oximetry screening that newborns receive to help screen for congenital heart defects. The nurses kept getting inconsistent readings. At first they thought it was the machine. Then they thought maybe the pulse ox wrapped around his foot wasnât working correctly. Then they wondered if he was just moving too much. After trying several times, they told us they wanted to admit him to the NICU for further evaluation. The provider who came to explain everything was a nurse practitioner, and from the very beginning I struggled with our interactions. I felt like she was very short with us and didnât explain what was happening in a way that made sense to two brand-new parents who were scared out of their minds. Every conversation seemed to end with me having more questions than answers, but despite not fully understanding why he needed to go, I agreed because I wanted whatever was best for my baby.
As soon as he was admitted to the NICU, they placed him on oxygen and started ordering tests. The first imaging they did led them to believe he had meconium aspiration syndrome, meaning he had breathed meconium into his lungs during delivery and it was making it difficult for him to breathe normally. Later they repeated the imaging and explained that the first scan had been taken while he was exhaling, making his lungs appear much more compressed than they actually were. The second scan was taken during an inhale, giving them a much better picture, and after reviewing it they told us they no longer believed he had obvious meconium aspiration. Suddenly we went from thinking we had an answer to having no real answer at all. As the days went on, they started telling us they suspected pulmonary hypertension instead and that it was possible there were microscopic amounts of meconium irritating his lungs that simply couldnât be seen on imaging. There were a lot of theories, but no one could tell us with certainty why his oxygen levels wouldnât stay up on their own.
By day 6 i was emotionally and physically exhausted. Instead of bringing my newborn home and giving him his first bath in the nursery we had spent months getting ready, I was giving him his first bath in the NICU surrounded by monitors, wires, and alarms. During our entire 9 day stay, I barely left his bedside. Altogether, I probably left him for about six hours in 9 days. Once I went home long enough to shower, and another time I went back to my hospital room to sleep for a couple of hours because I was so exhausted I honestly didnât know how I was still functioning. Every other minute either I or my husband was sitting beside him because I couldnât stand the thought of him being alone. By that point I was so sleep deprived that I genuinely felt delirious. The hardest part was looking at my baby and seeing a baby who otherwise looked completely healthy. He wasnât jaundiced. He ate great. He was alert. He slept normally. If you ignored the oxygen tubing in his nose and the numbers on the monitor, you never would have guessed anything was wrong. The only issue was that every time they tried taking him off oxygen, his saturation would drift down into the low 80s. Every day I kept asking when we might finally be able to bring him home, and every day I was basically told the same thing. That we would just have to wait, and it all depended on him.
By day 7 , I was becoming desperate. I understood that everyone wanted him to be safe, but I also knew what I was seeing with my own eyes. Outside of the oxygen numbers, he looked like a healthy baby. 7 days may not sound like a long time, but when youâre a first time mom living in a cold NICU room that constantly smells like bleach, barely sleeping, barely eating, and never wanting to leave your babyâs side, it feels like prison. All I wanted was to take my son home, sit in my living room with him, and finally start the life we had been dreaming about for nine months. I remember telling one of the nurses that if home oxygen was an option, I would gladly learn everything I needed to know if it meant I could take my baby home. She looked at me and gave me the best advice anyone gave me during our entire NICU stay. She told me to advocate for my baby. Those words completely changed my mindset. Instead of continuing to wait for someone else to decide everything, I realized I needed to start asking questions, speaking up, and making sure every reasonable option was being considered. Looking back, that conversation changed everything that happened next.
That same afternoon, around 6:30, I decided I was going to take that nurseâs advice. I spoke with the physician assistant who was working in the NICU that evening and explained that I wanted to know if taking my baby home on oxygen was an option. From everything I was seeing, he looked healthy. He was eating well, he was awake and alert, and aside from his oxygen saturations dropping when they took him off oxygen, he was doing really well. I told him that if home oxygen was a possibility, I was completely willing to learn how to use it because I was ready to get my baby out of the NICU and home where he belonged. He told me he didnât see why that couldnât be an option, but because it was already late in the afternoon, it was too late to get oxygen ordered and all of the equipment arranged that day. He told me to ask the physician the following morning because they would be the one able to approve it and write the orders.
Unfortunately, the provider on the morning of day 8 was the same nurse practitioner I had been struggling with from the very beginning. I explained everything again and told her I wanted to take my baby home on oxygen. She immediately told me she wasnât comfortable with that. At that point, I had reached my limit. I told her that while I understood she wasnât comfortable with it, I wanted her to present my babyâs case to the neonatal physicians board she answered to because I wanted to know whether they believed it was safe. I also told her that if she wasnât willing to do that, then I wanted a meeting with them myself so I could explain my concerns directly and hear what they had to say. Looking back, that was the first moment I truly felt like I was advocating for my baby instead of just accepting every answer I was given. She was clearly unhappy with my request, but after some back and forth, she agreed to discuss my babyâs case with the neonatal physicians board.
About an hour later she came back into the room with a sour attitude and look on her face and told me that the neonatal physicians agreed my baby could go home on oxygen, but she wanted him to be down to 0.5 liters per minute before she would discharge him. At the time, I believed that was simply the hospitalâs policy for babies going home on oxygen, so I didnât question it. She lowered him to 0.5 liters per minute while keeping him on 100% oxygen, and within about an hour his oxygen saturations started dropping back into the mid-80s. She increased his oxygen again and told me he wasnât ready to leave because he couldnât maintain his numbers on that flow. I remember feeling absolutely crushed. It felt like every time we got close to finally taking our baby home, another roadblock was put in front of us by this woman. At the time, I truly believed there was nothing else I could do. I was emotionally exhausted, physically exhausted, and so sleep deprived that I honestly felt like I wasnât thinking straight anymore. I just wanted my baby home.
I remember sitting there crying because I felt completely helpless. I know our stay doesnât sound like a long time until youâre the one living it and all you want is to wrap your baby up, walk out the front doors, and finally start your life together. Instead, every morning you wake up wondering if today will finally be the day, only to hear ânot yetâ over and over again. I had reached a point where I was too exhausted to keep arguing, so I decided I would wait until the next morning and see what the next provider would say.
The morning of day 9 a different provider came in for rounds, and from the moment she walked into the room, I could tell the conversation was going to be different. I explained everything that had happened the day before, including being told that my baby had to be down to 0.5 liters per minute before he could go home. She looked genuinely confused and asked me why that flow rate had been chosen. I told her that was simply the standard set from the provider the day previous. She immediately told me it wasnât the standard at all. She explained that babies go home on whatever flow safely meets their needs, and that the goal wasnât to force every baby onto the lowest possible setting before discharge. Hearing that honestly shocked me because I had spent the previous day believing weâd reached the end of the road when, according to her, we hadnât. She told me not to worry, that they were simply going to find the flow rate that worked best for my baby, and once they found it, she had no problem sending us home on oxygen.
I immediately burst into tears. For the first time in our entire NICU stay, I felt like someone was listening to me and working with me instead of just telling me no. Throughout the day they adjusted his oxygen until they found the setting that kept his oxygen saturations where they wanted them. Later that afternoon she came back and told me that we needed to get everything figured out fairly quickly because if we didnât, another provider would be taking over the next morning and weâd have to start over and hopefully get another provider who was willing to release us. When I found out from a nurse that the next dayâs provider on staff would once again be the same awful nurse practitioner from the day before, I felt like we were racing against the clock. I knew I couldnât go through another day of starting this entire process over again, so I was praying we could get everything finalized before the end of her shift.
Thankfully, we found what worked. At 1 liter per minute, my babyâs oxygen saturations stayed consistently in the mid-90s. It amazed me that such a small difference in flow rate made all the difference we needed to take him home. The provider immediately wrote the orders for home oxygen and sent everything over to the durable medical equipment company so they could come to the hospital, teach us how to use the equipment, and get us ready to finally take our baby home. I canât even put into words the relief I felt in that moment. After 9 long days, it finally felt like I could breathe again. It finally felt like we were going home.
The durable medical equipment company took what felt like forever to get there. While we were waiting, we started packing up all of our things because I refused to believe anything was going to stop us from leaving this time. I was excited, but I was also incredibly anxious because after everything weâd been through, it almost didnât feel real. When the company finally arrived, they brought in all of the equipment and showed us how everything worked. They taught us how to use the large oxygen concentrator that would stay in our house, the portable oxygen tanks that we could take with us when we left home, and how to change everything over safely. It honestly wasnât nearly as overwhelming as I had imagined. Once they finished going over everything, there was only one thing standing between us and finally going home: the car seat test.
If youâve never had a baby on oxygen, the car seat test is exactly what it sounds like. Our baby had to sit in his car seat for an hour while they continuously monitored his oxygen levels to make sure he tolerated riding in that position without his oxygen saturations dropping. They told us if he went below 90%, even for a second, he would fail and we wouldnât be leaving. After everything that had happened over the previous eight days, I was terrified that somehow something would go wrong at the very last minute. I was so nervous that I recorded the entire hour on my phone because I wanted proof of exactly what his monitor showed. Looking back now, I know that probably sounds extreme, but after everything weâd gone through, I wasnât taking any chances. That hour felt like the longest hour of my entire life. I donât think I looked away from the monitor a single time. Thankfully, he stayed above 95% the entire test and passed without any issues.
The second they told us we were cleared to leave, we packed everything up faster than I think we ever had in our lives. I donât even remember the walk out of the hospital very well because I was so overwhelmed with relief. All I knew was that after nine long days, I finally had my baby in my arms, and we were taking him home where I had wanted him to be all along. I quietly cried almost the entire drive home. When we got there, I just sat in our living room looking at him with my husband. It was around Christmas, and I remember the lights from our Christmas tree glowing in the background while I stared at his little face thinking how grateful I was that we had finally made it home. We were together as a family, and that was all that mattered.
Our journey wasnât over yet. He stayed on home oxygen for about a month and a half after leaving the NICU. Honestly though, even with the oxygen equipment, being home was so so so much easier than being in the hospital. We received a pulse oximeter that stayed attached to his foot all the time, so we could continuously monitor his oxygen levels ourselves. Between the pulse ox, the little nasal cannula, and the portable oxygen tank that went everywhere with us, he was attached to equipment almost all the time. We rarely used the large concentrator because I found the portable tanks so much easier to manage. I would order around twenty tanks at a time, and every couple of weeks weâd have another delivery made. It just became part of our normal routine for a while. We took that little oxygen bag everywhere we went, and before long it didnât even feel unusual anymore.
As the weeks went by, his oxygen numbers slowly started getting better. First during the day they became more stable , but he would still have some dips at night. Eventually he was consistently staying above 95%, even while sleeping, and after about a month and a half he was finally able to come off oxygen completely. That day felt like another huge milestone. Looking at him now, you would never know how scary those first weeks of his life were.
To this day, we never really received one definite answer for why everything happened. We were given several different possibilities throughout our NICU stay, including meconium aspiration, Persistent pulmonary hypertension of the newborn(PPHN), or microscopic amounts of meconium that couldnât be seen on imaging, but no one was ever able to tell us with certainty exactly what caused his oxygen issues. We also followed up with a cardiologist after he came home and were told after an echocardiogram that he had a small atrial septal defect (ASD) which basically means a hole in the upper chamber of his heart that was leaking oxygenated blood into the chamber where deoxygenated blood was. His pediatrician said this was really common for infants to be born with and have no symptoms of it at all, but it also could have contributed to the low oxygen. For a long time, that really bothered me because I wanted answers. I wanted to know exactly what had happened to my baby. Eventually I had to make peace with the fact that sometimes medicine doesnât have every answer, and that was okay because what mattered most was that he recovered.
The biggest lesson I took away from our experience was the importance of advocating for your child. Iâm not sharing this story to tell anyone to ignore doctors or assume every provider is wrong. The vast majority of the nurses who cared for us were incredible, compassionate people, and one nurse in particular changed our entire experience with one simple piece of advice. What I am saying is that itâs okay to ask questions. Itâs okay to respectfully ask for another opinion if something doesnât make sense. Itâs okay to ask whether there are other safe options available. If I hadnât spoken up and asked for my babyâs case to be reviewed, I truly believe our NICU stay may have looked very different and a lot longer. One provider made our life miserable and set unrealistic expectations for our sonâs abilities. While another provider reviewed the exact same situation, explained that going home on a higher oxygen flow was an acceptable option, and because of that we were finally able to bring our baby home safely.
I also want to say something to any parent whoâs reading this while sitting beside their baby in the NICU. I know how terrifying it is. I know how it feels to watch oxygen numbers every second instead of just enjoying your newborn. I know what itâs like to leave the hospital without your baby, or to feel trapped inside those walls wondering when youâll finally get to go home. I remember lying awake praying over and over that God would let me watch my little boy grow up. I remember begging Him to let everything be okay because I was so scared of losing him.
Today, when I look at him running around, laughing, playing, and living his best life, itâs hard to believe heâs the same tiny baby who spent the first nine days of his life in the NICU and his first month and a half of life attached to oxygen. If youâre in the middle of something similar right now, I hope our story gives you even a little bit of hope. There is light at the end of the tunnel, even when it doesnât feel like it. One day youâll look back at pictures from the NICU and realize just how incredibly far your baby has come.
And if I could leave you with one piece of advice, it would be the same advice that wonderful nurse gave me: advocate for your baby. Ask the questions. Speak up. Request explanations. If something doesnât make sense, donât be afraid to ask whether there are other options. You know your child better than anyone else ever will, and your voice matters. Blessings
