The remaining Days in the Hospital . . . .

The remaining days in the hospital were all heading in the right direction. Her medical care was excellent. Catie was nursing strongly, gaining weight, tracking well visually. Her hearing seemed fine, and considering she was on Phenobarbital, her muscle tone and head control were fair. When I fed her, she kept her gaze right on me. As much as we knew all the risks and possibilities, we were grateful for her current progress and we dared to hope.

Our pastor, Father Brucker showed up late on Saturday evening, after Mass, to pray with Caitlyn. Mark had called him to come and he didn’t hesitate to drive the thirty minutes each way at nine o’clock on a Saturday night. He handed me a vial of Lourdes water saying he had great faith in the prayers of the Blessed Mother. Weeks later, we learned that he had requested prayers for Cate from the pulpit at all the masses he said the weekend after she was born. Little did we know just how significant a role both Father and Lourdes would play in Catie’s life.

Back in those days my prayers were frequently to St. Therese of Lisieux. She is a powerful saint, in fact she’s a ‘Doctor of the Church’. Her symbol is a rose. So often when she intercedes for people, they receive a rose indicating that their prayer has been heard and answered by the Lord. Well I was praying to her back then and there were two incidences (Another powerful one comes six months later.) that seemed to be answers to my heartfelt prayers for Catie.
By about day eight at St. Peter’s the doctors started to tell me that the insurance companies wanted to discharge me ahead of Cate because I was doing well and they couldn’t justify my continued hospitalization care. I did NOT want to leave her, but I soon realized I had little choice. I pumped my breasts, froze milk and filled the freezer there with food for her in my absence. I also pumped at home. The plan was to spend as much time as I could possibly arrange at the hospital every day. My Mom agreed to stay with our boys until Catie came home so Mark could work and I could be with Catie.

As part of the transitional care, we also met the neurologist who would follow up with Cate upon discharge and began to set up multiple appointments with needed therapists and specialists. The pediatric neurologist was Dr. Rosenblum. (Rose-in-bloom) We had to smile upon hearing that. He wanted Catie to take a forty five minute bus ride to the Center for Disability Services for education and therapy. They were the “best” he explained. I respectfully answered that I was sure they were wonderful, but that no helpless, needy baby of mine was going on a bus with strangers, just weeks after birth because in my mind, the “best” place for Catie was with ME. He smiled and we agreed on home-based services which included PT, OT, ST and a teacher. We had follow-up medical appointments with an orthopedist, a hand specialist, neurologist, pediatrician, developmental specialist and an ophthalmologist. There were also appointments for lab work, EEG’s, social work, Albany Medical Center’s Newborn Follow-up Program, and county visiting nurses, in addition to the daily educational and therapy services.

Day nine, one of the nurses came to me and said “Why don’t you bring some of the samples you’ll be receiving home with you now. It’ll make things much easier when you leave with Caitlyn.” I agreed and she handed me a tall white plastic bad full of diapers, wipes, formula, and baby lotions and potions. When I turned the bag around it was covered with pink roses dripping in dew drops (that resembled tears). The bag said “This is for YOU Mommy!” It may sound silly, completely meaningless or coincidental to others, but for me it seemed St. Therese was letting me know she was with us and acknowledging our pain. (I still have the bag.) Being wheeled out of St. Peter’s with empty arms was a horrible feeling, but as I hugged that bag, I felt a little better and hopeful that we had friends in high places looking out for us.  As we left St. Peter’s Hospital we both decided we were hungry and a good old fashioned dose of junk food was in order.  We pulled into Burger King feeling rather depressed at our baby still alone in the hospital.  As we entered the restaurant we saw someone jump up and start waving wildly at us.  It was Jo-Jo!!  We laughed until we cried.  Our new friend was happy to see us and report that little Dayquana was coming along nicely.  Mark and I sent our love home to Shirelle and Grandmother.  We all shared a bond of faith, hope and love.

Finally, on November twentieth, just two days before Thanksgiving, Cate was strong enough to go home and face life with her three big brothers. My mother had to leave right away as she’d been there for weeks. Mark and I were on our own with four kids under six years of age and a fragile, needy, at-risk newborn. Thanksgiving was a blur. I cooked a turkey breast and the main fixings. Bought pies and called it done. Cate was receiving Phenobarbital and Dilantin round the clock. Every two hours she alternated between them. (The nurses had warned us to be sure to shake the Dilantin VERY thoroughly because it settled quickly. Years before a mother had just drawn up the medication without shaking the bottle and her baby had died. We were super careful. We were SUPER SCARED.) Of course, Cate seemed to like to nurse on the off-in between hours. Mark and I could have won Oscars for leading roles in Night of the Living Dead. We were zombies without a doubt. I don’t know how he worked every day. But my husband is a rock. (Roche means rock!) This lasted six weeks until we could finally discontinue the Dilantin because, by then, Catie had been seizure free since the night of her birth. At this point we only had to get up every four hours (not counting feedings). Luckily neighbors and friends had filled our freezer with food so at least I had very little cooking to do.

Our six-year-old, Mark, was very scared. He seemed to fear Catie would die. He remembered my late miscarriage the year before and he had recently lost his beloved “Grampy” (Mark’s dad). Whenever I tried to talk with him, he’d fill up with tears and say “I’m not scared.” It broke my heart. Paul, four, was acting out somewhat. My take on that was that he didn’t understand the changes in me. I had spent much time playing with him before and now Catie required so much constant attention and care. It seemed that she was either nursing, taking medications, at some medical appointment or due for her follow-up infant stimulation and exercises, etc. Things were completely different. Life as we had known it, was over. Matthew, at sixteen months, was oblivious to much of it. Our neighbor invited him over almost daily to play with his friend “Waura” (Laura). For that I’ll always be grateful because he was experiencing normalcy and it made me feel his needs were well taken care of. Normal. That was what we strove for. I was dancing as fast as I could. We did everything possible to minimize Catie’s injuries and maximize her potential. Both Mark and I went about each day with as much effort and thought as possible to, hopefully, ensure, that Cate and the boys flourished. We tried our best to meet the needs of all four kids. There was precious little time left over for each other and ourselves individually.

Exhausted, grieving, terrified and overwhelmed are words that could describe me. This was before answering machines, call waiting, emails and caller ID. The phone rang off the wall incessantly. For weeks, maybe months, I tried to repeat the gory details and speak to everyone. But I didn’t have the time and the constant rehashing of it all kept me continually fearful and on edge. My solution was to take the phone off the hook for hours on end almost daily. After the several minutes of loud beeping there was precious silence. No one was asking “Will she be ok?”, “Will she always have seizures?”, “Are you going to sue?”, “Are you going to try to have more kids?”. And then there were the well-meaning, horrendous statements . . . “So- and-So” had a baby with mental retardation and she is the light of their life.”, “It’s God’s will.”, “He won’t give you more than you can handle.” They meant well, and some of the remarks are even true on a certain level. . .. but trust me, they didn’t help. AT ALL.

Like every mother I wanted my children to be healthy and whole. I didn’t like my life ‘out there’ for all to psycho-analyze. I saw the looks, the “How is she doing?” stares. Again. Well-meaning but so unwanted and invasive.
Days were frantically busy. I had no help. Nursing. Diapers times two. Bedwetting times four. Laundry. And the endless appointments! Mark had to get ready for school and catch the bus. Life was full and over-flowing. The boys loved their sweet new sister. One day I went in to find a Tonka truck in the bassinette with Cate. (Paul loved construction equipment as there was so much development going on in our neighborhood. He was sharing his most precious possession with Catie. I melted.) Mark bought little tiny Teddy bears at the school store for his new sister. He was so proud and generous. And Matthew would bring me burp cloths when Cate was crying. He’d say “Catie wants to do goobas.” (We still refer to breast feeding as “doing goobas”!) It was bittersweet. I took all the love and enjoyment I could from each child, and of course Mark, but I’d be lying if I didn’t say that a dark cloud hovered over me. Mark would frequently say “Irish, I’m worried about Catie, but I feel like I’m losing you too.” I was doing my best to fight through it all but I was close to the edge of despair and grief.

Nights, in-between meds and nursing, were often spent either crying in the shower or curled up on our bathroom floor in a fetal position sobbing so as not to wake Mark. For one thing I was utterly exhausted from sleep deprivation, but Catie’s birth and medical problems had thrown me into a full-blown spiritual crisis. If it weren’t for the love of my husband and those precious kids who needed me so much, I would have collapsed under it all. I grieved Caitlyn’s not having a normal birth and just being able to enjoy my only daughter. I grieved how it all harmed my joy with my husband and boys too. I had discovered that the “worst” can happen in this life. That some things you can’t “fix”.

My constant prayer was “HELP!”. It would be months before, in retrospect, I saw God’s hands all over our lives.