Addison Grace was born at 6:07 a.m. on a Tuesday morning in late March, after 36+ hours of labor.  She wasn’t due until April 15th, and my doctor wanted to induce me a full week earlier.  Little A had other plans, however.  I ended up delivering with a doctor I had never met before because my doctor was in another state renewing his board certifications. I don’t think I could have hand-picked a better replacement, and the nursing staff was amazing!! Two nurses stayed with me the entire time, and one nurse even helped Chris hold me still during contractions so that an anesthesiologist could administer a second epidural when the line to the first one was severed (still not sure how that happened, and why it took anyone almost four hours to notice that I wasn’t receiving any medication).

I was allowed to hold my daughter for less than five minutes before they whisked her away to the children’s hospital next door, so doctors there could monitor her condition and decide if she would need surgery immediately.  Her dad snapped a couple of photos of Little A and mommy,  took a short video of our new baby girl, then sat down to listen as the nurses cleaned me up and Dr. Jacobs sewed me up (I required a single stitch, and thankfully it wasn’t painful after the epidural wore off.)

We were not able to see Addison for 24 hours, but the nurses made sure that I pumped every two hours so that Addison had food.  The next day, Chris wheeled me over to Cook’s in a wheelchair so that we could see our daughter.  Although she weighed 7 pounds and 1 ounce, she looked so tiny laying there in the incubator! We weren’t allowed to hold her, and had to settle for holding her hands.  She was so sweet, and looked perfect to me.

Addison spent six days in the NICU, and we were finally able to bring her home on Easter Sunday.  The cardiology team explained to us that she would be going home with a pulse oximeter machine so that we could “spot check” her oxygen levels daily.  We were told that anything above 75% was good, and that if her O2 levels dipped below 75% we needed to take her to a hospital right away.  We were so afraid that something was going to happen to her that Chris and I took turns sleeping so that one of us was always awake to monitor her. Her skin was dark and dusky, and we were unaware until much later that this was a symptom of her heart condition.

Life at home with Addison was an adjustment, but an easy one.  After two weeks she slept through the night, though I still had to get up every two hours to pump.  Addison was unable to latch onto my nipple, which we were told is quite common for babies with Down Syndrome, so she was bottle-fed.  This actually made our lives a bit easier, as her dad was able to help with feedings.  I was not producing enough breast milk, so we had to supplement with formula.

Addison was a voracious eater and her pediatrician was pleased with her weight and how well she was doing, so we were completely shocked and scared when I took Addison for her six week check-up with her cardiologist and ended up being admitted to the hospital due to  Addison having three “tet spells” during her doctor visit. She was admitted to Cook’s on Monday, and had surgery on Friday to put in a BT shunt.

We were given updates every hour during surgery, then suddenly a Chaplain was telling us that Addison went into cardiac arrest and the cardiology team had been performing CPR for more than fifteen minutes but she was not responding.  He went back into the CICU (Cardiac Intensive Care Unit) to check her status, and what seemed like an hour later he came back and told us she was stable and they were cleaning her up.  We could see her soon…

Her dad and I went back into the CICU, and I rubbed the only “clear” spot on her arm that didn’t have wires and tubes attached to it.  She looked so small and so sick lying in the incubator.  Everything seemed okay, then machines started beeping and a nurse began calling for a doctor; the room quickly filled with medical staff and Chris and I were pushed back into a corner of the room to watch as a doctor performed CPR on our daughter yet again.  Watching her little body jump off the table with each thrust of the doctor’s hand was too much for me, and I hid my face in Chris’s chest. A nurse noticed we were still in the room and ushered us back out to the waiting area.

We were so scared, and so traumatized, by what we had witnessed.  Later I would tell my mom that it was good for us to see the doctors performing CPR, that we saw first hand how they did everything possible to save our baby girl’s life.  And they did.  But it is something I never want to witness again.

Addison developed many complications after surgery: her lungs filled with fluid, requiring a chest tube; some of the doctors thought she was developing what they called “Nec”, and she had to be placed on donor breast milk that had had the fat skimmed out of it; she was unable to be weaned from the ventilator and was on it for so long that she lost her ability to suck…it was one thing after another.  After 54 days in hospital, Addison was finally released on July 2nd and we brought her home with an ND tube.  Second happiest day of my life ❤