Lubulwa Family

LIFE AND MINISTRY IN UGANDA

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Moriah

Not long after Micah was born, Patrick and Lisa decided to have one more baby. After seeing the blessing it was for the twins to grow up together, we wanted Micah to have the opportunity to have a sibling close to his age as well. Of course the twins and Micah are great brothers who love each other, but a 14-year age gap is quite significant. We were excited to find out we were pregnant again, and delighted to learn that this baby would be a girl to give a little balance to a family full of boys.

Lisa had a fairly easy pregnancy with no major concerns…until two weeks before the scheduled c-section. At that final ultrasound, Moriah was measuring significantly small, unlike any of the previous scans. When she was born, Moriah immediately went on oxygen and headed to the NICU. Eventually she was officially diagnosed with Edward’s Syndrome, a genetic disease with a life expectancy of less than a year. In fact, most babies with Edward’s Syndrome don’t make it past two weeks, if they even live to a full-term pregnancy at all.

Moriah spent 4 weeks in the NICU before we were able to finally bring her home. In those first four weeks, only Lisa and Patrick were able to visit her in the hospital (and one at a time). Lisa’s mom had come to Uganda for Moriah’s birth…thankfully she planned to stay for two months, because it wasn’t until the second month that she finally saw her granddaughter.

Our baby girl was on constant oxygen, wore a pulse oximeter (to monitor her oxygen levels and heart rate) at all times, used a feeding tube to take milk, and required 24/7 in-home nursing. Her heart had a hole as well as a blockage. At first we were really proud to see Moriah gaining weight, until we realized that as she grew, so did the blockage in her heart.

Ultimately we were blessed to have Moriah as the sixth member of our family for 4 1/2 months.

Moriah’s days in the NICU required drives through the city to get to the hospital that took at least one hour each way. Most days that commute included Patrick and Lisa crying, praying, stopping at the ATM to make payments towards the hospital bills, picking up diapers, and sometimes picking up an emotional-support milkshake.

In the early days, holding Moriah felt a bit precarious, with her monitors often alerting us about an elevated heart rate or drop in her oxygen levels when changing her position. But after awhile she gained weight and strength, and maybe we gained more expertise and confidence, and we all enjoyed snuggling with her whenever we could.
Sibling love. Balancing the needs of all of our children was a challenge during these months. But despite all of that, Moriah was truly loved by her family.
The day before Moriah went to be with Jesus, she shared some sweet moments with her big brother. As Lisa was rocking her in her favorite position (belly on Lisa’s legs for gas relief), Micah was overflowing with love for his little sister. He kept running over and giving her kisses, at least 20 times in a row. Micah happened to be wearing the perfect shirt for his affection.

Using footage he took during a family photoshoot, our friend created this video for us. It catches a glimpse of life with Moriah and the treasure she will always be for our family.

To say our time with Moriah was challenging is the understatement of a lifetime. However, it was also beautiful, and we were so blessed to have God give us our Sweet Baby Girl, even though it was too short.

Moriah’s name means the Lord is my teacher, and one of the biggest lessons we learned from her life is that sometimes we assume God has promised us things that he has not in fact promised. He does not promise us health or long lives. But he does promise His presence.

Though it honestly did not feel like it at every moment, we know that God was with us throughout the journey of Moriah’s life. And He will continue to be with us through whatever else life brings our way.