For the first three weeks, we stayed at the nearby hotel where we shuttled back and forth to see our babies. We would spend 12 hours or more by their side. Eventually, due to hotel costs, we began commuting from our home in Leroy, Texas about 25 minutes from the hospital. Our daily 12 hour plus visits did not stop, but it was an open unit NICU with no private rooms and no place to sleep. If the twins were having a really bad day, we would again check into a hotel for a few days.
For half the time, my husband and I were doing this together; however, he works offshore in oil and gas and would be away for three weeks then home for three weeks.As a pediatric nurse for 11 years, I knew and understood what was going on; however, my profession did not prepare me for understanding the information as a mom. It is much harder to hear the diagnosis and odds of your children’s condition when you are on the other end of the table.
The twins had a difficult NICU stay, but after four months in the Waco hospital, the word “home and discharge” were being tossed around. Both children, were on nasal cannula oxygen and taking the bottle by mouth. Things we would be able to manage at home.
Suddenly, Brooklyn got sick with pulmonary hypertension and was transferred to Cook Children’s in Fort Worth for treatment on July 28, 2016. She was too sick to leave her bedside so we had to leave Cooper in the Waco NICU until mid-August. On August 13, 2016, our little family was reunited when Cooper was discharged from the NICU in Waco to live with us at the Ronald McDonald House of Fort Worth.
Thankfully, we heard about RMHFW from our doctor and staff in the NICU at Cook Children’s. RMHFW helped us feel safe. The House gave us a home-like environment with hot meals, a clean bed, shower, and a place to do our laundry. It gave us a place for family members to come visit and support us.
My husband was still having to leave for work, but we now had a preemie in our room who could not be exposed to the outside world due to RSV and FLU season and one who still remained hospitalized. I could not be two places at once, so we relied on my mother and mother-in-law to come stay and help with the twins.
The RMHFW staff knew our situation and made sure we felt accommodated. They went above and beyond for our family. They were nice, kind, and always made us feel so welcomed. It is truly a House built on love and was a blessing which our new little family called HOME for 157 days. It was our life saver.
– Emilie Downing and Family