...but we never thought she would show us how brave she can be so soon.
Madeleine Wu Zi-Ying Weix weighed 8 lbs. 2 oz. when she was born February 2nd at 7:54 am. She was born almost the exact opposite time of year, almost the exact opposite time of day as her brother, Elliott (he was born August 1st at 7:53 pm). I was determined to recover from my c-section quickly and be discharged as soon as possible so that our family could all be together again. I was up and walking within 7 hours of being stitched up and joking with my doctor to try and get her to discharge me the next day. That seems so long ago now...I was indeed discharged a day after my surgery, but not for reasons I ever would have expected.
Maddie was already proving herself to be the perfect baby. She didn't complain much and just seemed sleepy. She was already very much a daddy's girl - she would wake for Dan and look up at him with one eye open and stick her tongue out at him. She loved holding on tight to your fingers and just looking up into your eyes. When Elliott and Grandma & Grandpa Weix came to visit, the brother and sister duo were immediately drawn to each other. Maddie stared at Elliott with interest as he pointed to her, said "baby," and then "gentle" as he tried to stroke the hair on her head. Our first night together went well. Dan stayed overnight with us because Maddie was rooming in with me and I needed help getting in and out of bed. She slept well and ate a few times during the night. That morning she was checked out by the pediatrician on call and was determined to be, "in perfect health." A couple of hours later, during the nurse shift change, one of the nurses noticed that Maddie's color seemed a bit off. She was looking a little purple, not unusual for a newborn, especially a baby who's temperature is 95.4 degrees fahrenheit. We all thought she was just a little cold and after bundling her up with another blanket, her temperature rose to a perfect 98.6 degrees. However, the nurse still thought something wasn't quite right. She decided to check Maddie's oxygen level and when several attempts hovered around 30% (normal levels should be 95% and above), we all assumed something was wrong with the sensor - its hard to get a good reading on a baby. Still, the nurse decided to pursue this further, just to be sure. She took Maddie to the Neonatal Intensive Care Unit to have the nurses there check her out. We just assumed she'd be back shortly. When she wasn't, we just assumed they'd forgotten to bring her back to us. When the nurses came back in and said that the neo-natalogist was going to come speak with us, we began to worry. When he finally did come see us, he didn't dance around the issue: Maddie has a congenital heart defect known as
transposition of the great arteries (or TOGA! as Aunt Viv puts it). Basically the arteries leading from her heart to the lungs & body are reversed so she isn't getting all the oxygen she needs. In order to correct the defect, Maddie would need to undergo open heart surgery. The hospital we were at wasn't able to perform the surgery and they were going to send Maddie to the hospital in Peoria, one of the best in the nation for this type of surgery.
The next time we saw our baby girl, she had at least half a dozen tubes attached to various parts of her body, including a tube down her throat to help her breathe which prevented her from crying out at the injustice of everything happening to her. She no longer looked like the tough little baby casting one-eyed glances at her father - she looked helpless and fragile. The nurses and doctors spent the next couple of hours prepping her for the helicopter ride to Peoria. We could only stand back and watch as they adjusted dosages of prostaglandins, added IV lines, and poked and prodded our baby. When they finally took off with her, we set off back home to pack, cry and then head to Peoria to be with her.
When we got to the hospital, the nurses and doctors updated us on her status and checked in with us regarding how the day's events unfolded. They spent the remainder of the night adjusting her dosage of prostaglandins and seemed to arrive at a good balance that allowed them to remove her breathing tube. Hearing her cry was music to my ears. We spent the rest of our stay talking to her, holding her hands and stroking her head before leaving to our hotel for the night.
Its funny how everyday with a newborn is different. While yesterday, everything seemed so incredibly overwhelming and terrifying, today, things seem more optimistic and under control. It turns out that Maddie is in a very good position right now. We were lucky that that one nurse was so persistent in ruling everything out so that Maddie's condition was spotted early on. In fact, we would be in the same position if this were detected before birth - minus the emotional stress and the helicopter ride. Maddie is breathing on her own and doing quite well with a few episodes here and there. She is stable and although we aren't able to hold her, we are able to be with her, touch, talk and sing to her. She's already proven to be quite spirited as well at only two days old. If we're not with her, we have to put her mittens back on or risk her pulling off the monitors and IVs attached to her. She lets it be known that diaper changes and temperature checks are not welcome, but singing and stroking her head are quite acceptable.
We were able to talk more with the doctors and get a better understanding of what the next few weeks would be like. Its best to wait until a baby is about a week old to perform the surgery so that they have had time to adjust to the outside world. It is a major surgery and recovery can take several weeks. But all of it depends on Maddie and how well she does. We take everything a day at a time right now. No time tables have been set, no schedules have been made. Hopefully in the next few days we will have a better idea of how she's doing and the doctor's will be able to decide on a day for her surgery. The rest is a big unknown. It could take her a week to recover and come home with us, or it could take months. It all depends on Maddie. So right now, our main goal is to let Maddie know that although we can't hold her and take her home with us, her family will be here with her as much as possible and give her as much love, stimulation, and support as we possibly can. Its hard and scary to know that someone so small and young is going through such a huge ordeal - but when you see her and how well she's doing, you just draw strength & courage from her. Its unbelievable. And she's only two days old. Already, I can't remember what life was like without her. I long for the day that I can hold her again and bring her home and protect her from her big brother, Elliott, trying to hug her to death as he does with his bear and his doll. I wonder what her future holds and how this will affect the rest of her life. I wonder if she will even make it through the surgery. And then I start crying...And then I remember, once again, that we need to just take this a day at a time...one day at a time.
