A little over four years ago, we were expecting our fifth baby. The doctors had seen a heart problem on his ultrasound. They weren't sure how serious it would be until after he was born, but they told us it looked like tricuspid atresia, where one of his ventricles did not develop. Basically he was running on three chambers instead of four, missing the use of the ventricle that pumped blood to the lungs. They told us that likely if he was to survive he would require three major surgeries as an infant, and that they could probably get him to college. (!). One doctor reassured us with, "I do have one patient who is 38 with the same problem."
This was also our second baby with a birth defect, which was actually a good thing because we were mentally over that whole concept and had experience with infant surgeries.
Luke arrived safely and with much fanfare at the University Hospital where he was "Life Flight" carted over the skyway to Primary's before I got to meet him. He got through his first surgery with flying colors, although Mark and I must have blocked out the part where the doctor told us it was a 20% mortality rate--we both gasped months later when the doctor was going over the stuff for the second surgery and told us that it was safer than the first.
He came home after only about two weeks in the hospital, although he was still on a feeding tube and a huge tank of oxygen was parked in the office waiting for his oxygen saturation levels to drop, as they told us would happen as he grew. I was to weigh him every day and report to the nurse once a week, which stressed me out to no end because we were trying to get him off the feed tube, and once it was off, to have him stay off. He was also on an oxygen saturation monitor hooked to an alarm that would go off several times in the night because his breathing would slow to the point that his levels would drop alarmingly. Not that we could really do anything when it went off, other than wake him up a little, which the alarm would sometimes do without us. Sleep was pretty much nil for both of us so we took shifts sleeping on the couch with Luke nearby in his bouncy.
Oh yes, and I was pumping every few hours because breastfeeding apparently burns too many calories for baby, also, they wanted the milk thickened way up to keep him gaining weight. I would have gone straight to formula but they hoped he would become healthy enough to nurse regularly. (He never did but I pumped for 6 months.) They also really wanted the breastmilk antibodies because a round of RSV or whooping cough, etc. would have done him in. Awesome. Get your vaccines, people. I probably should have worried about this part more than I did, but I figured, if he was supposed to be quarantined, Heavenly Father wouldn't have sent him to a family of 7.
Was all this a burden for me? YES. A big one. I did have many, many helpers--awesome doctors, my angel mother who came to be with my kids and run the house, many neighbors who brought meals. The burden would have been much worse without them--they definitely lifted much of it. I also did a great job of feasting on the scriptures and writing in my journal about my impressions--they were a lifeline.
Personally, though, I was a mess. The hormones and lack of sleep were pretty bad, but I had been through that a few times before. Mostly with the other babies it would just make me extra weepy to the point of giggles and I just knew I needed more sleep. This time, though, with all the added stress, I felt like I was facing a big mountain of darkness for my future and the future of our family. I couldn't hardly eat anything--chewing and swallowing was a huge chore. I cried all the time. I even had a hard time remembering Luke's name immediately--it just didn't seem to stick. I think throughout my pregnancy I subconsciously didn't want to become attached.
Then, one night I was watching a talk on TV that had been given at the General Women's Conference. A story was told about a pioneer woman coming to Utah who had lost her husband and although everyone else was happy to get to their destination, all she could see was a big mountain of darkness in front of her. Yes! I thought. That is EXACTLY how I feel! I don't remember the rest of the talk, but that week I arrived at the conclusion that only Jesus Christ and his grace could remove that mountain of darkness ahead of me, weighing on me so heavily, no matter the outcome.
I started a new course of action. It was two words. Pray Always.
For the next few days I did my best to carry on an ongoing conversation with God in my head. As I woke up. As I pumped or fed the baby. Before I parented my children. Counting blessings. Naming fears. Driving in the car. Doing the dishes. As I lay awake in bed for hours.
About two days later I felt totally different. My appetite returned. I felt like things would work out. I felt more relaxed. At some point we had called the nurse and asked to take off Luke's oxygen monitor except for periodic checks, and to our surprise she consented. I felt like life was going forward. At some point at this awakening time I came across a scripture that I have written about before, Hebrews 9:11, where Jesus is called the "High Priest of Good Things to Come" and I knew, I KNEW, that I could trust Him with my future. My burden was lifted.
Before I tell you the rest of the story, which happily, you've probably figured out, I want to share one more thing that totally describes my experience.
"And I will ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions."
--Mosiah 24:14, Book of MormonLuke became the "Star Patient" on the nurse's call roster, (although I always was a little stressed when I had to report his weight.) He never did have to go on oxygen, and his second surgery which was predicted to be at age 4 months was not required until 8 mos when his oxygen finally started to drop into the 70s. Miraculously, we were very calm about his second surgery and felt like it would go well. We were actually excited for open heart surgery. With the surgery came a wonderful surprise. Luke's heart was fairly unique--his ventricle was pumping a teeny bit, but he also had a hole in his heart that was providing increased flow to the lungs that they were able to work with during the surgery, negating the need for a third surgery. And allowing FULL LIFE EXPECTANCY. It felt like Christmas in May, and by July Luke was even growing rolls of baby fat in his legs. Here he is, the cute little stinker. Love him so much but also am so grateful for the way he taught me to rely on my Savior.