Elijah, the good thing (AKA the long blog)

I’m not gonna lie, Elijah’s beginning was hard. It was emotional, and exhausting, and messy. The unknown was so powerfully present it seemed to wrap itself around everything.  However, love and determination were also there and they outweighed any fear that the unknown could dish out. It's ok when life is hard. Let it be, let fear go and let the good stuff take its place.

    A common question I’m asked is whether or not we knew Lij had Down Syndrome before he was born. We did not. We DID know that he had some heart defects. The cardiologists seemed to think the defects could have been related to my Type 1 Diabetes. No one ever suspected, even though the defects he was diagnosed with are common with kiddos with Down Syndrome, that he actually had Down Syndrome. We were prepared to have a c-section because of Lij's heart, and we were also preparing ourselves for the possibility of NICU time depending on the severity of the defects. We didn’t have any genetic testing done; we didn’t really have any reason to. The tests weren’t accurate enough for us at the time to feel it would be worth the stress. With that said, we didn’t give it much thought and focused our attention on what we did know concerning his heart and how to prep for his arrival.

    I had been having non-stress tests (NST’s) 3x’s a week to check my blood pressure and monitor Elijah’s heart rate and movement (which is pretty much the norm for high-risk mommas and babies). All was well and good until I went in one afternoon for another (out of what felt like a gazillion) NST and the nurse on duty couldn’t get Lij to move...at all. He had a heart rate, a perfectly consistent baseline heart rate. The problem was that babies in the womb have heart rates that increase with activity and then go back to baseline every so often (the “standard” is about every 20-30 min). Over an hour passed and Lij wasn’t responding to ANY stimuli, so I was sent to the birthing center.

    Elijah was delivered via emergency c-section into a room full of specialists waiting for his arrival. I remember it was fast. I remember Lij didn’t cry right away, but when he did, I felt a wave of calm. I remember that there were so many amazing friends who just “happened” to be available that night who took care of all the details of our lives so that Joe could be with me as we focused on having our baby. I remember a team wheeled Elijah into my recovery room a few hours later so I could see him before he was transferred to Children’s Hospital. He was in an incubator. He was hooked up to a lot of tubes and machines. He was swollen, and red - and all I could think about was how absolutely beautiful he was.

    Lij had a hard time maintaining blood glucose levels and blood pressure. His O2 sats were all over the place and his respiratory rate was irregular. I remember watching him take these super fast shallow breaths and then stop for a few seconds too long, his lips would turn slightly purple for a moment, and then he would catch his breath and start again. He also hadn’t learned how to suckle yet, so he was being fed through an NG tube.

 I was kept at Kaiser for three days while I recovered a bit from the c-section. Joe was driving back and forth from Kaiser to Children’s Hospital and then home (to take care of  Lil' Joseph, eat, and sleep). On day three, I was discharged and I went to see my baby. Holding him for the first time three days post delivery was heaven on earth. We (Elijah and I) were quite a pair. We were both drugged on meds and exhausted. We had a long road to recovery ahead of both of us, but I had him, and he had me, and it was good .

       When the doctors pulled Elijah out of my belly, they noticed he had a few characteristics associated with Down Syndrome. My husband told me later that the doctors turned to him after pulling Elijah out and said, “We think he may have Down Syndrome.” That was pretty much all that was said, and everyone’s efforts went to working on Lij. They immediately hooked him up to O2 and monitors to try and regulate his breathing and heart rate. Joe decided to wait to tell me about the possibility of Down Syndrome until the blood work came back and he knew for sure. He also wanted to focus on what Elijah and I needed in the moment - confronting the possibility of a Down Syndrome diagnosis could wait. I needed to recover from that emergency c-section and with Type 1 Diabetes tagging along, it wasn’t a cake walk. Elijah needed our full attention on getting him through the next few weeks of being a preemie with heart defects.

       So we focused. My parents and Joe’s parents took turns staying with us and helped with Little Joe. Our friends from church did the same. We had a web of friends that kept us standing and moving. We had meals made for us and brought to us, and fast food cards given to us so Joe and I could eat and not have to think. I was at the NICU as much as possible. Joe came with me when he could, and stayed with Little Joe in between to keep our home as stable as possible.

     I remember one evening in particular that I was sitting by Elijah’s side in the quiet NICU. The gentle hum of machines and beeping monitors were calming somehow. I remember Lij was awake but quiet as we just looked at each and I held his hand. Suddenly, without warning,  ALL of Lij’s monitors starting alarming and quiet turned into a blur of emergency response. Elijah’s heart rate had spiked dangerously high and wasn’t coming back down. Nurses rushed in and started taking measures to try and drop it as fast as possible. They even put a bag full of ice in his face (that was a new one for me!) . His heart rate didn’t respond and in minutes the doctor, Head nurse, and 3 other nurses were around Lij. They had hooked him up to a defibrillator and were about to administer meds into his IV. The doctor quickly turned to me and said, “Elijah’s heart might stop….but it’s ok, we should be able to get it started again.” then the nurse next to him, terrified that the doctor had just told this child’s parent that his heart might stop right there in the NICU, looked at me dead in the eyes and said, “The defibrillator is just in case, honey,” but then she went straight back to working on Lij with a focus I had never seen before. Two nurses had to give the meds simultaneously and check each other as they did. Elijah was awake the whole time. I locked eyes with him and tears started streaming down my face. He quietly looked at me with so much trust. It was like time stopped between us while an entire team worked around us keeping him alive. I remember crying out quietly “Jesus, Jesus help….”. I realized in that moment that I could lose my baby and it was just too much. Tears turned to sobs as I stood there, watching. What were probably minutes felt like hours. Somehow, by God’s grace and the diligent work of the nurses and doctors, the numbers on the heart monitor began to drop. Then I was sitting next to him again, suddenly weak with exhaustion, holding his hand. He was ok. I was ok. We were ok.

         Every part of our story is drenched with grace. Every step of Elijah’s beginning was a gentle easing in of a new life. Our expectations were tossed out in a instant. Everything we thought would happen went out the window. We started again at zero. We knew nothing about what we were supposed to do or how we were supposed to do it, but we were going to learn. Our reality was far from our expectations, but expectations don’t always equal better.

 I learned that as life happens, we can take one of two roads. We can either choose to hold on to our preconceived expectations with an iron fist, or we can let go and let life flow as God maneuvers us through it with grace.

     That, in a nutshell, is Elijah’s beginning. It was hard, but sometimes it’s ok for things to just be hard. The good things are always worth the hard, and Elijah is the good thing.