Our dear Winston entered this world when he needed to - 6 weeks early. 

He came via emergency c-section as he was breach in active labor. 

The OB quickly and carefully brought our second son into the world (just as he had done for our first). He said, “He breathing well and his heart seems to be doing well!”
Then, the OB turned pale. Paul says that they all could see our tiny baby bruising before their eyes. He was whisked away. 

Later, we learned he had only 4k platelets per sample (should be 150-500k) caused by a rare platelet incompatibility disorder knows as Neonatal Alloimmune Thrombocytopenia or NAIT. Essentially, it means that my strong adult immune system was reacting to and attacking his tiny brand new body’s platelet supply. He couldn’t keep up. 

Throughout the following few days which felt like months, we watched our little one cared for by the best nurses available (one nearly retired and back just for him and another about to finish the last step toward being an NP). We watched daily blood tests, bilirubin lights and blankets on all hours of the day, heart and lung tests, and imaging. He was never without at least one of his nurses and/or doctors  

The imaging showed that,  in addition to his omphalocele, extreme bruising, inflamed appendix, prematurity, and threateningly high bilirubin levels, he had also been hurt by two severe bleeds in his brain before birth. One was in his right temporal lobe and another one which had destroyed around 80% of his cerebellum. 

Even with all of this, he was so beautiful. He loved when I would sing softly to him. After his first 3 days, it was safe to hold him. On day three Winston has his first two surgeries - to fix his intestines, appendix, and to create a bellybutton for him. They even asked if I wanted him to have an “inny” or an “outy.”  His breathing would stabilize when he slept on my chest - skin to skin. We’d stay that way for hours and hours in my reclining chair in his little room. 

On day 4 (Sunday morning), it was deemed safe for him to eat/drink. He was a natural at wanting to nurse but struggled with strength and endurance. Nursing took too much energy for a Preemie who needed to heal. I nursed once a day and pumped another 10-11 times each day to ensure I had an adequate supply for his delicate digestive system. I ended up pumping for about 5 month. By then we had managed to transition to exclusively breastfeeding. 

Once he was able to eat and fill
his diapers, his toxic levels of bilirubin decreased and his two devoted nurses were able to step back their hours... for one day. 

On Monday morning (day 5) I returned to his room after pumping and then sleeping for a few hours. The night nurse (not one of his main two) said she’d observed a seizure. After holding him for quite a while, I returned to my little room and wept. I cried longer and harder than i every had in my whole existence. This was all just so big.

They added a solid dose of anti-convulsion medication and his special two nurses appeared again the following day. They watched him closely for another 5 days. This is also when he had his first bath - they encouraged me to help. My terror and joy tumbled together in that moment of holding this tiny fragile boy and gently washing him. It was quick - as they’d removed his oxygen tube for just a few minutes. After five more days with his special nurses, he continued to do better and better. 

Eventually, our boy gained some
energy and gnawed on my finger during morning rounds. The main NICU doctor for his team actually had tears in his eyes when he saw this sign of a healthy baby. 

It took another 10 days for Tug to breathe well enough in an upright position to pass his car seat check and go home. He was only able to leave the NICU with the promise that we stay home until after his due date and only those who could protect his airway could hold him. 

Tug was around 4 weeks old the first time Tyler saw or touched him and two months old before Tyler could hold him.