A Rainbow for Rowan
Donation protected
Family of five
The day Justin and I found out we were having twins our hearts were filled with joy and excitement! When we asked our four-year-old daughter Haidyn if she wanted a baby brother or a baby sister, she would always reply with, “I want a brother AND a sister!” On 10/17/17, her wish was granted. Rowan Blake Taylor was born at 2:00 p.m. weighing in at 4 lbs. 12 oz., and Jase Beckham Taylor at 2:01 p.m. weighing 5 lbs. 3 oz. After undergoing an emergency C-section, Justin and I felt truly blessed to have two beautiful, healthy, but premature babies that miraculously required no stay in the NICU. We felt like one of the lucky ones being able to have the twin’s home only four days after their delivery! We were ready to start the next chapter of our lives as a family of five.
Maternity pictures we had done as a family right before the twins were born!
First picture of the twins together !!
Motherly instinct
Whoever thinks that “Motherly Instincts” don’t exist, you are wrong! Because let me tell you, it exists and is 100% real. My instincts started to arise when Rowan was about two months old. Her brother Jase, was striving in developing and gaining the weight he needed but I was lucky if I could even get Rowan to drink an ounce of breast milk. Along with the concerns I had with her difficulty in eating, she also could not focus her eyes to make eye contact. After changing her formula multiple times, trying different types of bottles, and many, many doctor appointments even including a visit with an ophthalmologist, we were assured these issues were due to Rowan being born premature. My motherly instinct told me that something still didn’t seem right.
A picture to show the huge difference in size difference between the twins.
Pieces to the Puzzle
On February 1, 2018, a new doctor we took Rowan to see discovered that Rowan had a heart murmur and got us in to see a cardiologist the very next day. The cardiologist could instantly tell just by the bluish color of Rowan’s skin that she was oxygen deprived. When the doctor realized her oxygen level was at 40% we were rushed to Nemours Children’s Hospital in Wilmington, Delaware.
The first time I honestly felt that I got to see my baby girl smile when being putting in oxygen!
The babies FaceTiming while being in the hospital! ( one of my favorite pictures )
Since February, Rowan has
undergone a PDA closing, a Lung biopsy, countless CT scans and X-rays, a Bronchoscopy, multiple trips to the cath lab, a G-tube, a Nissan surgery, and the closing of a Portosystemic shunt. Now I know these terms may sound confusing, so I included definitions and descriptions of all of this below for a better understanding. In February, Rowan went from being sent home from Nemours Hospital on 1 liter of oxygen, to then having to be readmitted again in March due to more complications.
Rowan and Jase so happy to be back together, even for such a short amount of time.
As of today, Rowan is currently receiving 12 liters of oxygen, receiving multiple respiratory treatments and medications, and is forced to be on a BiPAP machine in order for her to breathe. Her doctors are puzzled, and cannot give Rowan a clear diagnosis, or explain why this is happening to our Rowan. What they do know is that whatever Rowan has is progressing quickly and her overall condition is getting worse every day.
A picture of Rowan getting bi-pap treatment
Terms and definitions
*PDA closing - an artery allowing blood to skip circulation to the lungs. Should close after birth to allow blood to receive oxygen.
*Lung biopsy - a procedure perform to diagnose lung disease by taking a small portion of the lung to be examined under a microscope.
*Bronchoscopy- a way to visualize the inside of the airways for diagnostic purposes.
*Cath -a way to visualize arteries and measure the pressure in the heart.
*G- tube - a device to provide nutrition that is placed in the abdomen.
* Nissen - a surgery- procedure done to eliminate acid reflux and aspiration.
*Abernethy syndrome
- (Portosystemic shunt) when blood by passes the liver.
* Bi-pap - a form of therapy forcing positive airway pressure into the lungs.
*Interstitial lung disease - A group of disorders that cause progressive scarring of lung tissue.
*Tracheostomy - an incision in the windpipe made to relieve an obstruction to breathing
On the road to Boston
We are here now sharing our story because our family needs your help. The number one thing I can do as a mother is be strong for my sweet, little Rowan and do everything possible to get the answers we need for her to be on the road to recovery. Fortunately for us, a Pulmonology team in Boston Children’s Hospital has taken a strong interest in Rowans case. We were so excited because Boston Children’s Hospital is known to be one of the best children’s hospitals in the United States! Boston’s plan is to complete further testing as well as a possible tracheotomy and predict her recovery in the hospital to last a year. Rowans condition is described as a “puzzle” by many medical professionals, and as her mother, this is a puzzle that I refuse to give up on. My family and I will do whatever it takes to solve this puzzle no matter what the picture at the end may show.
How you can help us help Rowan
Most importantly, our goal is to find answers for Rowan and to keep her with her family while doing so. It hurts me deeply that Rowan and Jase are missing out on such a remarkable bonding experience and I don’t want them to have to lose any more time together. So, as a family, we have decided to move temporarily to Boston, Massachusetts. However, the only way our family can make the move together is if we raise the proper funding or else we will be forced to be separated. Our goal is to raise $50,000 for Rowan and our family. At this point of time the littlest donation can make a HUGE positive change in our journey.
The money that is donated will be used for the following:
Traveling costs for flying or driving to /from Boston
Being able to stay with Rowan without the burden of finances. Justin and I will be taking a leave of absence from our jobs, so we can stay together as a family at all times.
Cost of living and expenses (car payments, food, hotel stay)
Support for Haidyn and Jase
Hospital cost for what is not covered under Rowan’s insurance (as of now this hospital is out of network but a contract is being drawn will give further details).
A Rainbow for Rowan
You can help us by donating and sharing our story via Facebook, Instagram and simply by word of mouth. Please hashtag #RainbowsforRowan. We have chosen this name because it’s exactly what we are doing by true definition of a rainbow. Which is an arch of colors formed in the sky due to certain circumstances such as rain. We need help to create this rainbow because it won’t stop raining. This little girl has truly taught us more in 7 months then we have learned in 27 years. Rowan has really made life so much brighter and colorful for all of us.
Also, if anyone who has been through something similar or they have any information on any ideas as to diagnoses or recommendations please reach out to me by email or phone or even if you are going through something similar and just want someone to talk to. I now know how hard a situation such as this is and want to help others in any way I can! I will keep everyone updated via blogging when having the time Our family is deeply thankful for all who donates and better yet, even took the time to read Rowan’s story. And for that, you have already made a great impact on her life, so thank you!
Please help bring my baby home !!!!
The day Justin and I found out we were having twins our hearts were filled with joy and excitement! When we asked our four-year-old daughter Haidyn if she wanted a baby brother or a baby sister, she would always reply with, “I want a brother AND a sister!” On 10/17/17, her wish was granted. Rowan Blake Taylor was born at 2:00 p.m. weighing in at 4 lbs. 12 oz., and Jase Beckham Taylor at 2:01 p.m. weighing 5 lbs. 3 oz. After undergoing an emergency C-section, Justin and I felt truly blessed to have two beautiful, healthy, but premature babies that miraculously required no stay in the NICU. We felt like one of the lucky ones being able to have the twin’s home only four days after their delivery! We were ready to start the next chapter of our lives as a family of five.
Maternity pictures we had done as a family right before the twins were born! First picture of the twins together !! Motherly instinct
Whoever thinks that “Motherly Instincts” don’t exist, you are wrong! Because let me tell you, it exists and is 100% real. My instincts started to arise when Rowan was about two months old. Her brother Jase, was striving in developing and gaining the weight he needed but I was lucky if I could even get Rowan to drink an ounce of breast milk. Along with the concerns I had with her difficulty in eating, she also could not focus her eyes to make eye contact. After changing her formula multiple times, trying different types of bottles, and many, many doctor appointments even including a visit with an ophthalmologist, we were assured these issues were due to Rowan being born premature. My motherly instinct told me that something still didn’t seem right.
A picture to show the huge difference in size difference between the twins.Pieces to the Puzzle
On February 1, 2018, a new doctor we took Rowan to see discovered that Rowan had a heart murmur and got us in to see a cardiologist the very next day. The cardiologist could instantly tell just by the bluish color of Rowan’s skin that she was oxygen deprived. When the doctor realized her oxygen level was at 40% we were rushed to Nemours Children’s Hospital in Wilmington, Delaware.
The first time I honestly felt that I got to see my baby girl smile when being putting in oxygen! The babies FaceTiming while being in the hospital! ( one of my favorite pictures ) Since February, Rowan has
undergone a PDA closing, a Lung biopsy, countless CT scans and X-rays, a Bronchoscopy, multiple trips to the cath lab, a G-tube, a Nissan surgery, and the closing of a Portosystemic shunt. Now I know these terms may sound confusing, so I included definitions and descriptions of all of this below for a better understanding. In February, Rowan went from being sent home from Nemours Hospital on 1 liter of oxygen, to then having to be readmitted again in March due to more complications.
Rowan and Jase so happy to be back together, even for such a short amount of time. As of today, Rowan is currently receiving 12 liters of oxygen, receiving multiple respiratory treatments and medications, and is forced to be on a BiPAP machine in order for her to breathe. Her doctors are puzzled, and cannot give Rowan a clear diagnosis, or explain why this is happening to our Rowan. What they do know is that whatever Rowan has is progressing quickly and her overall condition is getting worse every day.
A picture of Rowan getting bi-pap treatment Terms and definitions
*PDA closing - an artery allowing blood to skip circulation to the lungs. Should close after birth to allow blood to receive oxygen.
*Lung biopsy - a procedure perform to diagnose lung disease by taking a small portion of the lung to be examined under a microscope.
*Bronchoscopy- a way to visualize the inside of the airways for diagnostic purposes.
*Cath -a way to visualize arteries and measure the pressure in the heart.
*G- tube - a device to provide nutrition that is placed in the abdomen.
* Nissen - a surgery- procedure done to eliminate acid reflux and aspiration.
*Abernethy syndrome
- (Portosystemic shunt) when blood by passes the liver.
* Bi-pap - a form of therapy forcing positive airway pressure into the lungs.
*Interstitial lung disease - A group of disorders that cause progressive scarring of lung tissue.
*Tracheostomy - an incision in the windpipe made to relieve an obstruction to breathing
On the road to Boston
We are here now sharing our story because our family needs your help. The number one thing I can do as a mother is be strong for my sweet, little Rowan and do everything possible to get the answers we need for her to be on the road to recovery. Fortunately for us, a Pulmonology team in Boston Children’s Hospital has taken a strong interest in Rowans case. We were so excited because Boston Children’s Hospital is known to be one of the best children’s hospitals in the United States! Boston’s plan is to complete further testing as well as a possible tracheotomy and predict her recovery in the hospital to last a year. Rowans condition is described as a “puzzle” by many medical professionals, and as her mother, this is a puzzle that I refuse to give up on. My family and I will do whatever it takes to solve this puzzle no matter what the picture at the end may show.
How you can help us help Rowan
Most importantly, our goal is to find answers for Rowan and to keep her with her family while doing so. It hurts me deeply that Rowan and Jase are missing out on such a remarkable bonding experience and I don’t want them to have to lose any more time together. So, as a family, we have decided to move temporarily to Boston, Massachusetts. However, the only way our family can make the move together is if we raise the proper funding or else we will be forced to be separated. Our goal is to raise $50,000 for Rowan and our family. At this point of time the littlest donation can make a HUGE positive change in our journey.
The money that is donated will be used for the following:
Traveling costs for flying or driving to /from Boston
Being able to stay with Rowan without the burden of finances. Justin and I will be taking a leave of absence from our jobs, so we can stay together as a family at all times.
Cost of living and expenses (car payments, food, hotel stay)
Support for Haidyn and Jase
Hospital cost for what is not covered under Rowan’s insurance (as of now this hospital is out of network but a contract is being drawn will give further details).
A Rainbow for Rowan
You can help us by donating and sharing our story via Facebook, Instagram and simply by word of mouth. Please hashtag #RainbowsforRowan. We have chosen this name because it’s exactly what we are doing by true definition of a rainbow. Which is an arch of colors formed in the sky due to certain circumstances such as rain. We need help to create this rainbow because it won’t stop raining. This little girl has truly taught us more in 7 months then we have learned in 27 years. Rowan has really made life so much brighter and colorful for all of us.
Also, if anyone who has been through something similar or they have any information on any ideas as to diagnoses or recommendations please reach out to me by email or phone or even if you are going through something similar and just want someone to talk to. I now know how hard a situation such as this is and want to help others in any way I can! I will keep everyone updated via blogging when having the time Our family is deeply thankful for all who donates and better yet, even took the time to read Rowan’s story. And for that, you have already made a great impact on her life, so thank you!
Please help bring my baby home !!!!Organizer
Ashlyn Kitch
Organizer
Lancaster, PA
