Austin and Ashli, Then

Prior to the coming home of Austin, Ashli had been discharged and getting used to her home. Before, when both were in the NICU, we could visit them together. We could take turns with both of the twins, and feel we were giving the both equal amounts of attention. But with Ashli at home, and Austin in the NICU, mom and dad became torn between the happy, healthy, growing little girl at home, and their little boy still in the NICU, not eating, not thriving and in desperate of surgery. I still look back and feel that this was one of the hardest times we had to endure.

But on the evening of August 11, 1994, we left Women and Children's Neonatal Intensive Care Unit for the last time. The roller-coaster-ride we had stepped onto, on April 14, 1994 at 99 miles per hour, was now slowing down. Would it come to a complete stop anytime soon? This was now the big question.

Our small home became a mixture of routine and chaos. Sounds redundant, right. Well not with a set of preemie twins. Not only did you have the normal things you do with a new born times two, but also, all the preemie related things to do, times two. We quickly discovered that in the middle of chaos, there had to be routine. What was a day like for us?

1. Feedings every 3-4 hours x's 2

2. Rocking and putting to sleep every 3-4 hours x 2

3. Medicines every 3-4 hours x 2

4. Changing diapers as needed x 2

5. Nebulizer treatments every 4 hours x 2

6. My pumping my breasts every 4 hours

7. Washing and scalding bottles twice daily

8. Washing their laundry

9. Keeping individual records consisting of EVERYTHING we did for on a daily basis.

10. Routine home health care visits by a nurse every 3-4 days

And these are just the things that, at four years later, I CAN remember vividly. It seemed on every hour of the day it was time for SOMETHING! Somehow, we managed on few meals, little sleep, and maybe a shower here and there. This was our life, and still the roller-coaster had not stopped. But I can say we did live through it.

Things seemed to go good until two things happened. The twins were weaned from breast milk to formula, and the winter months came upon us. In October of 1994, I had played super mom to my fullest extent and something had to give. It was so hard for me to give up the one thing I had been doing for my babies from day one, pumping my breasts for their milk. It became my rock, my sanity, in this whole experience, and to give it up, was such a painful decision to make. But for my well being, and even that of the rest of my family, I did. And to attest to how important breast milk is for preemies, once the twins went to straight formula at the end of December, they immediately became sick. And from that point until spring of 1995 we battled sickness. Fortunately, neither twin had to be re-hospitalized through that winter. We feel what saved us was total isolation; we remained under what we called "house arrest" all winter.

During those months we did have visits from the required nurses and from one other program. This program also became a part of our lives. This program is called Early Intervention (E.I.). The name is self-explanatory, it is a program that concentrates on the idea that children-at-risk need intervention early on, to help them later in life. And E.I. has done so many wonderful things for us. For example, I am an only child, and never did a lot of baby-sitting as a teenager. I knew nothing about the development of a normal newborn baby, infant, or toddler, let alone, babies that were going to be late in development. So I am very grateful that E.I. taught me what babies, infants, and toddlers should be doing at what stage in development. On Austin and Ashli's first birthday, their Family Coordinator brought them two presents: a set of stacking cups and a shape-sorter bucket. She told me before she left, "Now don't put those toys away thinking they are not old enough for them yet. Put them with the rest of their toys and let them do what they want with them, even if it isn't what they are suppose to." I did just that. They explored them at their own pace, and in no time was trying to stack and sort them. This became a rule in our house. We did not buy all age appropriate toys . . . but bought developmental toys that were just "a little too-old" for them. This has worked wonders in helping them to become age-appropriate.

By April 14, 1995, our Austin and Ashli seemed to be coming right along. Their delays were within the realm of their adjusted age and actual age. Example, they were born four months early. So on April 14, 1995, they were 12 months old, actual age. Their adjusted age is derived by taking 12 months, minus the four months they were born early, equaling eight months adjusted. So at 12 months old, they had the characteristics of babies eight months old. Adjusted age in preemies is used until 2-3 years of age for determining if they are developing and growing steadily. The goal is to eventually bring the gap of between actual and adjusted age to a close. During 1995, we would start to see that Austin and Ashli were going to be two totally different individuals, developing at a completely different pace. Austin crawled in April of 1995. Ashli did not crawl until June of 1995. Austin walked in July of 1995, and Ashli walked in late December of 1995. Ashli was struggling more with BPD, needing hospitalized for lack of oxygen during the winter. We slowly came realize that even though Austin had the rougher beginning, it seemed Ashli would have more long-term effects of her prematurity

By April 14, 1996, when Austin and Ashli were two years old they seemed to be equivalent to a 15-18 month old. From that point on they seemed to keep a delay of around 6-9 months. Minor cognitive and developmental delays were becoming more noticeable. But we really began to notice the prevalence of strong speech delays in both of them. It also was clear that potty-training was nowhere in the near future. But yet, we seemed to sail through the terrible two's, and this fooled us. We thought we had given a break do to all we had been through! NOT!

Last Updated on June 20, 1998 by B. Lynn Shahan