Luella Grace
Donation protected
My name is Barb, and I am known as MaCa (grandma) to Luella Grace and her 2 big brothers. I first learned of this precious little girl joining our family around Christmas of 2019. Her big brother, Noah, showed me a picture of an ultrasound his mommy had shared with him. I was so confused at first and started checking for a date of when this ultrasound had been taken. The pieces came together for me in a matter of minutes and I realized I was going to be a grandma again. I was so happy. Then I realized it was going to be a little girl. I was over the moon. You see, my husband and I raised 4 boys and Ashley comes from a family with 3 brothers. My son, Daniel, and his wife, Ashley, already have 2 boys and were now expecting another baby--a girl!! We never expected to have a little girl come from our family line with the number of boys far outweighing the girls in our family.
Despite feeling sick to her stomach most of the time, Ashley never once thought that something was wrong with her baby. In January, that all changed. When an ultrasound was completed again around 20 weeks, the doctors discovered that Luella was showing some unusual signs that needed to be further investigated. Daniel and Ashley met with many specialists and had several ultrasounds. The doctors discovered that Luella had a bilateral cleft lip and possibly a cleft palate.
They also found a small hole in her heart. As time went on, it was discovered that Luella was falling behind in her measurements. She didn't measure what her gestational age suggested she measure. Her stomach was almost nonexistent in the ultrasounds. We were all so worried about her. We didn't really understand what all of this meant and what life was going to be like after Luella was born. We just knew she was small for her age.
Near the end of May, Ashley went to the doctor for her weekly appointment thinking she would come back home and prepare for her baby to be induced on June 1st, but plans were changed again. Her amniotic fluid was lower than it had been. She was sent to the hospital to receive extra fluids to see if this would help. Again, she thought she would be sent home soon after to prepare for Luella's birth. Boy was she wrong! The doctors decided to keep Ashley. The next thing we know, Luella is scheduled to be induced the next day.
Luella made her appearance into this world on May 27, 2020 at 5:23 pm weighing in at 3 lbs 11 oz and 17 inches long. She was premature by almost 4 weeks and she was about 6 weeks behind in her gestational growth. Daniel and Ashley spent about 10 minutes with her before she was taken to be evaluated. It was determined that she would need more specialized care so Luella was transferred to the NICU at a children's hospital in our area. Luella needed to have a chest tube placed immediately due to a pnuemothorax. Blood was drawn for genetic testing to be done. She was on blood thinners and so many other medications and steroids. She was intubated and sedated. Our little Luella was so sick and we didn't know if she was going to make it even one night but she pulled through.
We later learned that Ella has a very rare genetic disorder called Wolf Hirschhorn Syndrome. This explains her cleft lip and palate, her small size, her heart issue, her tiny stomach, her kidney disease. This explains our Luella and her uniqueness!
Luella has been on a roller coaster ride of recovery. She has endured being intubated and extubated a few times, . She has been scoped for fistulas, had ECHOs of her heart, had a g-tube placed, been on many levels of oxygen support. She made great strides early on and then got very sick. We took 5 steps backwards in her recovery and wondered if we would ever get to bring Luella home. Today Luella is able to tolerate feedings of about 2 oz every 3 hours and she weighs just over 6 lbs. She is still in the NICU but is working very hard to improve so she can come home to her parents and big brothers. Her oxygen support is currently at 2L but needs to come down to .25L. She will also need to pass a few tests and have some special equipment ordered and sent to her home before she can be discharged.
We believe by the time Luella is 3 months old she will be home with her family where she belongs. Unfortunately this is not where her journey will end. Luella will need to return to the hospital in a few months to repair her lip. When she is about a year old she will return to have her palate repaired. These are the known upcoming surgeries for this poor baby. Because of Wolf Hirschhorn Syndrome, Luella will be prone to respiratory infections. We suspect she will have many visits to the hospital because of illness and swallowing issues.
Daniel and Ashley are only just beginning to realize what kind of affect raising a special child is going to have on their family. They are excited to learn some important lessons about love, acceptance, sacrifice, and contentment. They are happy to share these lessons with their boys and to raise all of their children to demonstrate these traits to everyone they come into contact with on a daily basis.
Daniel and Ashley want to do what is best for their family and to provide for Luella in the best way that they can, but that is going to take many resources which may or may not be affordable for a young family even when they have health insurance and decent jobs. Luella is going to need many therapies to grow and develop into the beautiful young lady she was meant to be. This is why I have decided to set up this GoFundMe page for them. Any funds donated to this family will be used to help cover the costs of anything that Luella is going to need to make life easier for her.
Thank you for taking the time to read about Luella Grace. Please look up Wolf Hirschhorn Syndrome and help us raise awareness about this rare genetic disorder. Share Luella's story with your friends.
Luella Grace today, just shy of 3 months old but still in the NICU
Despite feeling sick to her stomach most of the time, Ashley never once thought that something was wrong with her baby. In January, that all changed. When an ultrasound was completed again around 20 weeks, the doctors discovered that Luella was showing some unusual signs that needed to be further investigated. Daniel and Ashley met with many specialists and had several ultrasounds. The doctors discovered that Luella had a bilateral cleft lip and possibly a cleft palate.
They also found a small hole in her heart. As time went on, it was discovered that Luella was falling behind in her measurements. She didn't measure what her gestational age suggested she measure. Her stomach was almost nonexistent in the ultrasounds. We were all so worried about her. We didn't really understand what all of this meant and what life was going to be like after Luella was born. We just knew she was small for her age.
Near the end of May, Ashley went to the doctor for her weekly appointment thinking she would come back home and prepare for her baby to be induced on June 1st, but plans were changed again. Her amniotic fluid was lower than it had been. She was sent to the hospital to receive extra fluids to see if this would help. Again, she thought she would be sent home soon after to prepare for Luella's birth. Boy was she wrong! The doctors decided to keep Ashley. The next thing we know, Luella is scheduled to be induced the next day.
Luella made her appearance into this world on May 27, 2020 at 5:23 pm weighing in at 3 lbs 11 oz and 17 inches long. She was premature by almost 4 weeks and she was about 6 weeks behind in her gestational growth. Daniel and Ashley spent about 10 minutes with her before she was taken to be evaluated. It was determined that she would need more specialized care so Luella was transferred to the NICU at a children's hospital in our area. Luella needed to have a chest tube placed immediately due to a pnuemothorax. Blood was drawn for genetic testing to be done. She was on blood thinners and so many other medications and steroids. She was intubated and sedated. Our little Luella was so sick and we didn't know if she was going to make it even one night but she pulled through.
We later learned that Ella has a very rare genetic disorder called Wolf Hirschhorn Syndrome. This explains her cleft lip and palate, her small size, her heart issue, her tiny stomach, her kidney disease. This explains our Luella and her uniqueness!
Luella has been on a roller coaster ride of recovery. She has endured being intubated and extubated a few times, . She has been scoped for fistulas, had ECHOs of her heart, had a g-tube placed, been on many levels of oxygen support. She made great strides early on and then got very sick. We took 5 steps backwards in her recovery and wondered if we would ever get to bring Luella home. Today Luella is able to tolerate feedings of about 2 oz every 3 hours and she weighs just over 6 lbs. She is still in the NICU but is working very hard to improve so she can come home to her parents and big brothers. Her oxygen support is currently at 2L but needs to come down to .25L. She will also need to pass a few tests and have some special equipment ordered and sent to her home before she can be discharged.
We believe by the time Luella is 3 months old she will be home with her family where she belongs. Unfortunately this is not where her journey will end. Luella will need to return to the hospital in a few months to repair her lip. When she is about a year old she will return to have her palate repaired. These are the known upcoming surgeries for this poor baby. Because of Wolf Hirschhorn Syndrome, Luella will be prone to respiratory infections. We suspect she will have many visits to the hospital because of illness and swallowing issues.
Daniel and Ashley are only just beginning to realize what kind of affect raising a special child is going to have on their family. They are excited to learn some important lessons about love, acceptance, sacrifice, and contentment. They are happy to share these lessons with their boys and to raise all of their children to demonstrate these traits to everyone they come into contact with on a daily basis.
Daniel and Ashley want to do what is best for their family and to provide for Luella in the best way that they can, but that is going to take many resources which may or may not be affordable for a young family even when they have health insurance and decent jobs. Luella is going to need many therapies to grow and develop into the beautiful young lady she was meant to be. This is why I have decided to set up this GoFundMe page for them. Any funds donated to this family will be used to help cover the costs of anything that Luella is going to need to make life easier for her.
Thank you for taking the time to read about Luella Grace. Please look up Wolf Hirschhorn Syndrome and help us raise awareness about this rare genetic disorder. Share Luella's story with your friends.
Luella Grace today, just shy of 3 months old but still in the NICUOrganizer and beneficiary
Barb Cockrill
Organizer
Missouri, MO
Ashley Tipp
Beneficiary