august1999

Becky is a beautiful child, and I thank God for blessing our family with her. At 19 months old, she is crawling all over the place. She even pulls herself up and stands by things. Becky's vocabulary continues to grow daily. It's so much fun listening to the way she pronounces new words. Despite all the things she can do and has accomplished, Becky has definite developmental delays and long-term problems from her prematurity. In March, she was diagnosed with mild cerebral palsy. Her legs are a bit stiff. Because of this, Becky isn't able to walk, stand independently or even sit the correct way. Instead, she sits in a "W" position with her knees in front and her feet along side of her. She also is less corrdinated with her right hand and favors her left one. In April she began going to school twice a week for physical and occupational therapy. She loves it, and I've noticed an improvement in the things she can do.
   In June, Becky had an upper-GI series and was diagnosed with reflux again. She is being treated with cisapride (propulsid) and zantac. Last month she had a video-swallow study and we found out she has dysphagia (difficulty swallowing) and has been occasionally aspirating her food. She also has oral aversions and "freaks out" with certain textures and foods (3rd stage baby food). Becky will begin going to an outpatient feeding program once a week and re-learn how to swallow and eat. Until then, she is only allowed to eat pureed foods and thickened liquids. I add a thickener to all liquids she drinks (including milk). She may eat whatever foods we eat, but it needs to be pureed in the blender first. We had tacos the other night, and Becky loved it. Pizza is another of her favorites. It looks pretty gross after it's been through the blender, but at least she's eating something.
   Feedings have been a big struggle, and trying to get Becky to gain weight has been the hardest thing. A few months ago we tried adding vegetable oil (MCT oil) to her milk for added calories. Last month she was switched from milk to pediasure for calories and nutrient. Becky did great her first year and weighed 17 lb. 3 oz. at her one-year check up. At 19 months, she weighs 17 lb. 10 oz. - that's a gain of only 7 oz. in five months!! There are days that I have a hard time with the feeding struggles. They have been, and still are very stressful. I am continually counting calories, watching EVERY bite that goes in her mouth and trying to get her to eat more. I constantly have to remind myself to let the Lord take care of Becky's feeding issues. I need to be patient and lean on Him. I need to give Him completely control of the situation. He has gotten us through a lot worse than this, and I know He will continue to be there for me.
   Becky's lungs are doing good, especially considering how severe the damage was when she was born and how long she was on the ventilators. She came off oxygen on April 6, 1998 - one week after her due date. Becky does have some breathing problems, though. Whenever she gets a cold, it goes straight to her lungs, and she begins wheezing. She is on a steroid inhaler to help prevent problems (flovent). We also have a nebulizer at home to give her albuterol breathing treatments is she needs them. Despite all this, she has never been rehospitalized for lung-related problems since she was discharged from the NICU.
   Jessi is now four years old. She doesn't seem to have any long-terms problems from our separation and has grown into a joyful, energetic and extremely outgoing little girl. At first, she talked about the hospital constantly. Every time we drove near the highway, she would ask if that was the way to my hospital. Jessi's play has definitely been affected by everything, though - especially the way she plays with her dolls or plays "doctor". She has her own assortment or syringes, and she pretends to give her dolls medicine before she feeds them(by specific name - cisapride, zantac). Her doctor kit includes more syringes, scrub brushes (for "brushing" therapy), NUK toothbrushes (for oral aversions), and wraps for holding pulse ox probes. The other day, Jessi took a piece of shoe-string licorice, held it under her nose and said, "Becky used to wear this." It reminded her of the nasal cannula Becky wore when she was still on oxygen. Other than that, Jessi doesn't talk about our separation much. She is slowly forgetting some of the details. In her mind, nothing abnormal happened. Jessi thinks all babies live in the hospital for a long time before they come home. She also thinks it's normal for Becky to be in school. Jessi doesn't understand that things were MUCH different when she was a baby.
   I had a hard time dealing with Becky's prematurity as the one-year anniversaries of everything approached last year (my PROM, the holidays, Becky's birth, etc.). I relived the nightmare over and over. I started writing "The Peace of God" shortly after that. I kept a sporadic journal during my hospitalization, and I talked to a tape player during Becky's NICU stay. I also went back to the hospital and read my chart and Becky's chart. It helped me face the emotions I had buried. Writing about everything was wonderful therapy. The more I wrote, the more I realized how miraculous Becky's life is. I have come to accept the fact that Becky's prematurity will never be behind. us. There will always be some type of reminder, whether it's Becky's disabilites, or my memories. The memories are getting easier and easier to deal with, though.
   Becky's prematurity has forever changed my life. I will never look at pregnancy, babies, or even child development the same as before. I cringed every time I learn that a friend is pregnant. I get angry and upset when I hear a pregnant person complain about "still" being pregnant at 7 - 8 months and wanting their baby to be born soon. I realize they don't understand the implications of having a preemie, but it's still hard to hear. I also find myself avoiding places like parks or play areas at restaurants. I feel bad keeping Jessi away from these places, but it hurts too much to see other children the same age as Becky - they are running all over the place while my daughter sits and watches.
   At the same time, I am thankful for everything God has blessed our family with - Mark and I have a solid relationship that has been strengthened by the turmoil we faced, and we have two beautiful children. Becky's delays and disabilities will definitely have an impact on her life, but I don't think they are going to be very severe. The next couple of years are going to be rough, but I think she will do fine as she gets older. We will continue to lean on the Lord. He will guide us through whatever the future holds for our family.