my husband and i wanted children very much, we went through several unsuccessful ivf attempts before deciding to adopt. our youngest child, "little d", is 6 years old. we made a birthplan with his birth mother when she was 20 weeks along. the pregnancy went smoothly, prenatals were great, until we received a call on a sunday in the middle of the night. our son was born prematurely at 27 weeks, weighing in at 800 grams.
when we were finally discharged from the nicu, my life revolved around caring for my new baby. he wasn't meeting milestones and was diagnosed with cerebral palsy (spastic quadriplegia) just before he turned a year old.
his life has always been a good one, he's such a happy child. he's so much fun and it is truely a gift to parent such a great kid. he's in a wheelchair and cannot do a lot of gross motor skills (sit up, walk, etc.), but it's okay. we've always worked around it and we make the most we have with our little d. despite his physical disabilities, he's so smart. he's articulate (sassy), can count, knows some spanish and sign language and is learning how to play the drums with his functional left hand. i know i'm his mom, but he is just an amazing kid. everyone who knows him just loves him.
he had an appointment with his physical medicine specalist yesterday. in the past month, i've noticed that his left leg hasn't looked quite right. as the physician was performing his physical assessment, his face changed when he got to his hips. we went for an xray immediately and came back to speak with the doctor. my little d has what the doctor said as "severe hip dysplagia".
we are being referred to an orthopedic surgeon and will probably have an appointment next week. the physical medicine doc said that little d would probably have to have a femoral osteotomy. from the literature i've been able to find, this isn't a simple little outpatient procedure. it's quite extensive. and it's happening to my son at the tender age of 6.
i am just crushed. i can't stop crying. i feel an incredible amount of guilt; there have been days when i've been late coming home from clinicals and had not done his pt exercises at home. there have been times when we've been out and have missed his afternoon medication. even though my children are #1 in my life, nursing school has consumed such a great deal of my life and energy.
my husband am i also lost a daughter before little d was born. she was also adopted and her birth was wonderful and we all thought she was a beautiful, healthy baby girl. at her 8-day well baby check, her pediatrician heard a murmur and sent us directly to children's for an echo. we thought everything was fine-- babies have heart murmurs all of the time, right? well, not in this care. she was diagnosed with hlhs and her patent ductus arteriosus was beginning to close. she had to the first step of the norwood (open heart surgery) the next day to save her life. she passed away when she was 5 months old due to rsv with complicated her heart defect.
my husband and i stayed up almost all night last night and talked about our options. he thinks i should go on and begin fall quarter on wednesday (i have 3 quarters left of my adn program). little d begins kindergarten on monday.
i just feel so torn on what i should do. i know if i stayed home and choose to drop out, i'll be at home alone with little d in school and i'll ruminate all day. if i do begin fall quarter, i may have to drop in the middle of it, depending on what the orthopedic surgeon says.
thank you for reading if you've gotten this far. nobody really understands. i'm just so scared.
