Test for Do It For Delaney

I had a normal pregnancy; everything was going great. Then on May 23 at 5:30pm while I was  resting in bed, my water broke. I was nervous  because I was four weeks early.  I wasn’t ready or packed. I called my mom to come with us and Dave’s family to watch Grace and Maddie. We were off to the hospital. The doctor assured me although it was early, our baby should be fine.  We were in the right place since Lucile Packard has a special care nursery inside the hospital if Delaney needed it.  I got the epidural but it didn’t take on the left side of my body, so the anesthesiologist put some medicine into my IV.  Everything was going fine I wasn’t in any pain and tried to rest. At about 4:00am I called the nurse to ask for another shot in my IV since I was feeling pain again. She came in to check  and was startled because Delaney’s head was poking out. She helped me onto my side and told me to keep my legs closed. The nurse ran out of the room calling for help. It was panic in our room as the nurses ran in with the bassinet for Delaney and folded up the bed Dave was sleeping on. The nurse rolled me onto my back and Delaney popped out on the bed with her cord wrapped around her neck. The nurse cut the cord and handed Delaney to the other nurse who put her in the bassinet and check  her over.  Just then the doctor came in. Delaney  was having a little trouble breathing and since  they usually like to just keep a close eye on babies that  have a little difficulty,  she went straight to the special care nursery.  Although everything happened in a panic, I wasn’t  that worried yet because she was in great hands,  she would get what she would need, and  she would “ be back soon“. 

The special -care nursery doctors came in our room about an hour after she was born and explained that Delaney was having real trouble with breathing so they wanted to transport her in an ambulance to Lucile Packard in Palo Alto.  We agreed , and  they said they would bring Delaney in to see us before they took her.  The EMT’s and the doctor that would go with Delaney in the ambulance came into our room. Delaney looked so little with all the cords and wires stuck in her arms and legs and down her throat but it was the first time I got to see her. She was beautiful and looked just like her sisters.  After they left, Dave & I broke down and held on to each other and I think that was the first time we were really scared. We pulled it together because Gracie (6) and Maddie (3) were coming to see us and we’d have to explain where Delaney was and what was happening.  I was comforted holding onto my two girls and longed to hold my third.

Dave  left me at the hospital  and went to Lucile Packard to see what was going on with Delaney.  My epidural wasn’t wearing off and I still couldn’t feel my legs.  It  was such a sad feeling to have given birth and not be holding my baby and not have the joy in the room when a baby is born. It was like a dark cloud hovering over my room.  The nurses would call from Lucile Packard when Dave wasn’t there with her to let me know how Delaney was doing. We couldn’t have done it without our wonderful family. Between me in the hospital in Fremont, Delaney at Lucile Packard in Palo Alto, running the girls to and from school, it was a crazy time. Besides worrying about  Delaney , my legs still weren’t working. The physical therapist came in and worked with me for the next couple days.  I started  to get partial feeling in them and  they finally let me go home with a walker after being in the hospital for three days. We went straight to Lucile Packard so I could  see and bond with Delaney. I wasn’t prepared for all the sick babies in the NICU but it was amazing to finally hold her and touch her soft skin. She was still connected to all these wires and bruised from them. I started pumping and bringing my milk so Delaney could start trying to drink from a nipple. Once she got off the ventilator and  could drink from a nipple she was transferred back to the special care nursery in Fremont so we could be closer to her. She would still stop breathing  so she had to stay at the special care nursery for three more weeks until she could pass her car seat test. While she was there they found she had a mega cisterna magna (fluid)  in the back of her head. But said they weren’t worried about it and that they would schedule an MRI back at Lucille Packard when she was three months old.  We were given CPR classes for infants and an infant mannequin  and video tape for home  practice and instructing family members.  It hit me then, as I was bent over this fake baby, giving it CPR that this could be my child, and I broke down again.  Delaney would be coming home finally but wearing a monitoring devise wrapped around her chest attached to a box that would let us know when she stopped breathing. We were terrified.  We were so happy to get her home and be a family but worried she would stop breathing and die.

Finally when she was three months old we had the MRI done. The neurologist told us she had microcephaly which is usually associated with mental retardation. (Microcephaly from condition “micro” meaning small and “cephalous”, brain.) The doctors didn’t know why she had this condition and that started testing to find an answer. They told us she wouldn’t be able to do much, probably no walking or talking. Her mental age would most likely be a baby forever. She would forever be dependent on us. They said that we should start therapy as soon as possible to get her to be the best she could be. On the way home I cried uncontrollably as I started to understand what this would mean for her, for our other two daughters and for my relationship with Dave. I prayed that God would give me the strength to rise to the challenge, to be a better mother and wife.

In the first five months, it seemed that our lives were consumed with therapies: physical therapy, occupational therapy, speech therapy, visual therapy (“Blind Babies“) and early- intervention play therapy. We noticed she wasn’t tracking things or looking us in the eye.  Her hands were always clenched into fists. She couldn’t roll over, and wasn’t hitting her developmental milestones. She was diagnosed with cerebral palsy. It seemed like we weren’t catching any breaks. The nights were long with her breathing alarm going off often. Luckily we would only have to yell her name and rub her and she would start breathing again. She finally got to take the monitor off at one year. What a wonderful day!

When Delaney was 15 months old we found Conductive Education. An excellent program that uses some innovative methods. Her conductor, Krisztina has always pushed her to do more. I loved it and started seeing the progress as we worked with her.  We too started to expect more from Delaney and worked even harder. She was able to roll over, sit without flinging herself backward. And eventually crawl. She is now almost three and is working with a gait- trainer for walking. I pray she will someday walk, but even more one day hear her say “Mama?”

Sometimes the day- to- day stuff is especially hard. The running around from therapy to therapy, wondering if I’m doing enough for her to reach her full potential. It’s hard to hear her cry and have to guess what she wants. To see her chew and put everything in her mouth and constantly wipe the drool off her mouth so she doesn’t get red rashes and sores on her chin. To fight the insurance companies. To make sure my other two beautiful daughters are getting what they need from me. To make sure I appreciate my husband. To get to work on time not to mention the house, laundry, lunches, homework and school activities. But I wouldn’t change a thing because she has taught me what is truly important in life. When I hear her giggle and I look into her big blue eyes, I see an angel from God!