Faith becomes a part of the Journey

Cora stayed in hospital for four days before we were released to come home. During that time she was put on oxygen twice because her oxygen saturation level was lower than 85%. She was nursing well though. I was so happy for this accomplishment because the lactation specialist had already visited the house and talked with me about the struggles Down syndrome infants can have with latching on and the “suck / swallow” instinct.

We were both exhausted by the time we got home. I was relieved to be away from the hospital and the nurses. Everyone was a great help, almost to helpful. It seemed like we were the revolving door for those interested in seeing a Down syndrome infant, or for well wishers that felt it necessary to tell me about their family or friend that has a child with Down syndrome. Did they all think I needed a pep talk? I had just pushed a baseball through a keyhole, I just wanted peace and quiet with this beautiful little girl.

Once home the real travels began. We spent the night at home and the next day were going to Marquette to see the pediatric cardiologist. The six hour ride did not do well for Cora and her learning to nurse. It put us back severely. I couldn't get Cora to latch and stay on the breast. By the time I had finally succeeded in getting her to nurse she had gone a full 10 hours without nursing. Once she remembered what it was all about I spent the next few days nursing her every hour.

The average time it would take for Cora to latch on and suckle would be 40 minutes. Her suckle time would be a good fifteen minutes on each breast. It was only when she suddenly lost interest in the breast feeding and had no energy or appetite that the whole heart issue really scared me. At 5 weeks Cora's heart started to fail and I rushed her to Petoskey hospital. They were able to stabilize her with IV Lasix (a diuretic) and she did well on that dose for about a week. She again lost interest in feeding and this time her breathing was labored as well. I rushed her to Marquette Emergency room where her cardiologist was and he took an Echocardiogram and again stabilized her on a higher dose of Lasix and added Digoxin.

During the first five months of Cora's life we traveled over 8,000 miles together for doctors appointments. We were averaging one to two doctor visit every week to either Marquette, Petoskey, St Ignace, Pickford Clinic and to another specialists because it was originally thought that Cora was deaf. . To say the least, Cora is a great traveler and when she becomes upset if I sit her in the infant car-seat she goes to sleep because she assumes we are going for a long ride.

Cora's deafness seemed to affect myself and the kids less than the news of her having Down syndrome. (She hadn't passed numerous hearing screens until in her fourth month. At that time it was figured the hearing development delay was from being born early.) When I thought Cora was deaf I did some research on sign language for babies. I found a great program and it fulfilled my thirst for learning as well. I studied with the company and became a Certified Independent Instructor for the Baby Signs Program®. Cora has been learning sign language from the time she was two months old. She could recognize the sign for milk when she was three months old and would get excited and kick her legs to show she was hungry if you did the sign. Cora is just now starting to wiggle fingers when we do the milk sign for her and waves her arms. It is amazing at how well the other children have taken to the needs of Cora and it all blends in beautifully with everyone. Cora was quickly becoming the little star of the family. The older children love her tremendously and sometimes everyone rushes forward when I ask for a volunteer holder so I can get a household chore done

But I digress....sorry. The doctor's had her stabilized on the Lasix two times a day and Digoxin had been added to help her heart pump more efficiently. I had almost forgotten about the heart problem until she really started to show signs of failure.

On a routine visit to her cardiologist in Marquette he told me it was time to schedule the surgery because blood-work was showing increased sign of heart failure and Cora was starting to loose to much weight despite the fact that I was feeding her breast milk with formula made to give her 26 calories per ounce. (normal formula feeding contains 20 calories per ounce.) We, the doctor's and I, were doing everything we could to give Cora a fighting chance, her heart was just saying that her little body couldn't do it anymore without some medical intervention.

This is when the real journey in faith began....