My Two NICU Warriors...

I never was a religious person, I considered myself to be spiritual. The NICU changes people, and this was one of my positive changes. I was watching miracles happen through the power of prayer and it brought something within me alive. This is a small portion of our journey.

My sons are both NICU warriors; Grayson who is two and Owen who is six months old. Grayson was born at 29 weeks and 4 days and Owen at 28 and 6 days. They both weighed nearly the same, Grayson at 2lbs 14oz and Owen at 2lbs 14.6oz. I had Grayson vaginally and Owen emergency c section and they were both in the NICU 71 days.

I can remember anticipating seeing my firstborn for the first time, getting wheeled down from recovery in a wheelchair four hours after giving birth. Passing all the doors with tiny isolettes and hearing the bells and buzzing of desating babies. Walking in and seeing Grayson with all those wires, transparent skin, bright lights and face masks wondering if he was going to live, was SO scary. All I could do was breakdown and cry. I remember a nurse coming in and explaining a ton of information that I probably only retained three percent of. I was officially in a daze.

I can remember laying in my hospital bed, hearing the babies cry in rooms surrounding mine, and the lullabies that would chime and hum a tune. It was a difficult thing to hear those crying babies as I pumped and pulled at my nipples to get the slightest amount of milk to feed my baby through his tube, I wanted him at breast. I resented those parents that had their baby bedside and felt completely robbed of my pregnancy and birthing experience. I just wanted my baby to be plopped on my chest, so I could have tears of joy instead of fear and have my baby bedside.

Leaving the hospital without my baby was excruciating and very difficult for my marriage. We were both going through the same thing, but our mindset was completely different. It would take a lot of communication and fights to understand what one another was feeling and what each of us needed in that time. 

I was terrified when Grayson was intubated, I couldn’t help but think my “poor baby”and how confused he must be. Then there were the bruises on his tissue paper skin from the PICC line attempts... and the sores on his face from the tape holding his CPAP machine. It was all just a heart wrenching experience. 

The MRIs, scans, ultrasounds and X-rays meant more uncovering of issues my baby would battle. Test after test it was discovered that Grayson had a hole in his heart, a brain bleed, swollen ventricles in his brain, malformations in his brain and a bicuspid valve in his heart. It felt like the scary findings would never end and these “common” preemie procedures would be ongoing. I remember sitting in a room at the end of the NICU hall, just down from my babies room. It was all window. I stared at the cars driving past as tears streamed down my face, begging for it to be a dream and that my baby would be okay. After his diagnosis, I did research and discovered the terminology they used meant he might have epilepsy, and may need surgery on his bicuspid valve in his heart. The rest of the issues were common in preemies and should resolve on their own, and they did. Grayson is followed closely by a neurologist and cardiologist, for his malformations (possible epilepsy) and his heart condition. As of right now, he has no complications and is a healthy two year old. He only delays in speech and even that is coming along. He is so inspiring and strong, and  even helped me through Owen’s NICU stay more than he could ever understand.

During my second pregnancy, I was required to take Makena progesterone auto injector needles that my husband injected into the back of my arm every week. My doctors were unsure the reasoning why Grayson arrived so early and saw me as high risk, which is why they prescribed me this medication. The needles were painful, I cried lots of tears and definitely wanted to quit them more than once. I was enraged when Owen arrived early and they clearly didn’t work for me.

I remember again being wheeled into the NICU to see Owen. I was much stronger than last time, waving and flashing smiles to the nurses I knew from the first time around. I also got to see Owen and kiss him on his forehead after the c section, before he was taken away to the NICU and that helped a ton with my anxiety. I kind of knew what to expect.

This time it was an extremely difficult healing process for me physically. I can still remember the shooting pain as the nurses would push down on my stomach to help prevent any blood clots. I would hold my breath and moan in pain when they would release, just to push again in another spot. The pain of walking, sitting, standing, bending, laughing, coughing etc. was almost unbearable. My c section was definitely worse for me than my vaginal birth. 

Being discharged before Owen was just as painful as it was with Grayson. Passing over the doorway lines that separate the hospital from outside, was a feeling of abandoning half my heart. Then there’s the comments that everyone feels necessary to share “he’s where he needs to be right now”, I don’t think anything could make you feel worse. I don’t think anything could ever prepare a parent for that car ride leaving the hospital without your baby with you.

Owen was transferred to main campus a week after birth due to complications with pooping out his meconium (a babies first poop). He was getting a distended belly and vomiting anything he was fed. At main campus, he went through surgery on his intestines. We initially thought he’d have a colostomy bag but all the surgeon ended up doing was milking his intestines to help loosen the meconium. It was determined the latter end of his intestine had a smaller opening than it should, and for this we would wait for it to mature and hope it grows to its normal size. He received rectal irrigation’s and suppositories daily to help pass the meconium. He was then diagnosed with meconium ileus, which goes hand in hand with Cystic Fibrosis. He was given a 99% chance of having this incurable disease. The test results took about 5 weeks to get back and during that time he also received a biopsy for Hirschsprung’s disease. I cannot even express with words the worry and anxiety I experienced while waiting for these results. I kept thinking how I wasn’t strong enough to be a cystic fibrosis mom with all the treatments, hospital stays, surgeries, watching my baby struggle to breathe, and have a shorter life expectancy compared to others. I would breakdown crying in the shower, eating my breakfast, playing with Grayson, in the middle of conversation and over the phone. It’s possibly the lowest and out of control I’ve ever felt within my life. Thankfully every week for the “6 weeks” they say it takes to heal from a c section, I had family or friends stay with me to help with both Grayson and my sanity. Grayson was most definitely angry with me after a short time of not being able to pick him up when he was hurt, wanting held or to be put to bed. The guilt during that time was very testing because I knew all he wanted was mom.

I prayed, others prayed and a guardian angel that received his wings while Owen was in the NICU room next to him, provided safety. The power of prayer is amazing. The results were in  for Owens tests and it was a NEGATIVE for both! I had to get confirmation a few times, I was in such disbelief. I even pinched myself to ensure I was not dreaming. I could breathe again, I was getting tired of reading my newly inked tattoo “this too shall pass”, over and over again trying to convince myself not to worry (what ever will be, will be...right?). My tattoo still takes me back to those unknown feelings of worry and stress, but I’m so thankful we came out healthy and well.

Both my boys spent their last two weeks of their NICU stays, focusing on eating. They struggled a lot with grasping the concept of suck, swallow and breathing while bottle feeding. I can remember it being the only thing holding us back. We had taken the discharge classes, completed the car seat test, got their immunizations and were literally just needing them to eat. It felt like an eternity but we could finally see the light at the end of the tunnel and we wanted it NOW.

It was a bitter sweet moment walking out of the hospital, baby in hand. I kept thinking about my resentment to families leaving before us, and thinking how they must feel watching us walk out. My heart sunk for those just beginning the rollercoaster ride and said a prayer as we left. I was also just very scared at taking my babies home and not having machines and nurses to monitor 24/7. But we did it!

For both boys I made it to my 6 month goal of pumping. It wasn’t easy and most definitely wasn’t ideal for me, but I did it and am proud to formula feed and breakup with that milking machine. I never anticipated breastfeeding/pumping my second but told myself if I could, and if he was a NICU baby, that I would. I am not going to lie or exaggerate, but I hated every moment of it and it caused me a lot of tears and stress during the whole NICU rollercoaster. It was definitely an additional stressor.

Grayson and Owen are healthy happy kids now, who bring us the most joy. It’s hard to put into words all the feelings of ups and downs in the NICU, but just know you’re not alone. Watching these warriors grow and learn, hitting their milestones and just loving life is the most rewarding feeling of overcoming something that was once so unpredictably fragile. The NICU will always be apart of us and we are thankful for the community of support.
So while you sit beside the isolette, or sit remembering your NICU past, or your friends NICU experience, or whatever ties you to the NICU... just remember you’re not alone and we all stand together to support one another. Some days will be harder than others and that is okay.