Over at Kelly's Korner, she is having a Show us your life - Show us your Ministry. This blog was started last April to update our family and friends on Rylee and our family. This blog was also used (later realized) to be my therapy and coping that came along with the trial and tribulations of Rylee's prematurity and illness. So this Show us your Ministry is about Prematurity and chronic illness.
Welcome those from Kelly's Korner! Our journey began on January 15, 2009 when at 28 5/7 weeks my water broke. I knew I was pregnant with a baby girl we would name Rylee. Rylee was born on January 29, 2009 weighing 2 lbs, 15 oz (1353g) and was a tiny 15 inches long. It was then that I started her CarePages page to keep our family and friends posted on Rylee. We spent 79 days in the NICU at UIHC in Iowa City. During that time, she was diagnosed with a chromosome deletion in her chromosome 6. It's a small deletion but so far, we have no idea what it means. Rylee was immediately intubated after birth switching CPAP within 24 hours after birth.
She has been diagnosed and overcome some of the following:
Chronic Lung Disease (Bronchopulmonary dysplasia, off continuous oxygen June 29, 2009)
Retinopathy of Prematurity
Chromosomal Abnormality - Karyotype 46XX, CMA deletions of 4.2Mb segment at 6q25.1q25.2
Prominent bilateral renal pelvises with concretions in the right calyceal system
Grade 1 IVH (brain hemmrage)
Heart murmur with physiologic tricuspid regurgitation
Kidney disease
Enlarged heart
In August and mid-September, Rylee was having severe vomiting that progressively got worse. It was found that her head circumference grew almost an inch in 8 days. After a CT scan, she was diagnosed with Hydrocephalus. She had a VP shunt inserted to drain the ceribral spinal fluid off her brain to her belly.
This winter we have, luckily, been able to avoid most illnesses. RSV and H1N1 have not invaded our home. Today, Rylee is a teeny tiny little 1 year old girl. She weighs 14 lbs, 5 oz and is 25 7/8 inches long. Physically and cognitively, she is behind her adjusted age even. To help get her moving physically, we have physical therapy visiting our home twice a month and occupational therapy once a month. Rylee has chronically sick lungs, heart and kidneys.
It has been an extremely long year and as hard as it was, my husband and I grew stronger together as a couple, grew as individuals and grew as parents. As I stated before, this blog was made to primarily update my family and friends on Rylee. It has ended up being a therapy for me. I hope that if someone I didn't know, who just had a premature baby and thinks their world is ending, they would read my blog and see that during all those days, there will be good days. I have Rylee today. She is a happy little girl but she is a chronically ill little girl too. I will do everything in my power and will to give her the best life possible for her. And this my Ministry to help others who are facing the trials of Prematurity and chronic illness.
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Blessings to you and your sweet one. I have high BP and have since the beginning of my pregnancy. My chances of pre-eclampsia and delivering early are 1 in 3. Thank you for your story and encouragement. Give Rylee a hug!
ReplyDeleteJen
Our son was born at 27W and 5/7 days...he was 2# 8oz...today he is 5yrs old and doing great. You would never know all that he has gone through ,he has a fighting personality(as all preemies do-lol).He is small for his age but other than that no one would know :-)
ReplyDeleteSomedays will be tough but know they get easier and easier-good luck!
Thanks for this post. For such a tiny girl, little Rylee certainly is a fighter! It sounds like you are giving her excellent care with PT and OT and numerous medical visits. It's hard, very hard, but she is making progress - so keep up the good work!
ReplyDeleteIf you would like to connect with other parents of preemies, you might want to visit the March of Dimes community called Share Your Story: http://www.shareyourstory.org/. It's very supportive.
What a beautiful family. Thank you for sharing your journey and little Miss Rylee with us. She's cute as a button!
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