Preemie Parent Request - Updated with my Response
-- I received this e-mail over the weekend and thought I would share it with everyone so that more people had the chance to reply. I will post my reply once I complete it.
Dear Preemie Parent:
Hi. My name is Andrea Ball and I am a reporter with the Austin
American-Statesman in Austin, Texas.
I am writing a large story about the mental health effects of premature
birth on families. This story is funded in large part by the Rosalynn
Carter Mental Health Journalism Fellowship Program.
The main story follows a family with three premature children. We look at
their childrens' hospital stay, their challenges at home, the effects on
the parents' marriage and the financial problems caused by medical costs.
We explore the issues of depression, anxiety and post traumatic stress
disorder. We are also looking at the long-term effects on prematurity on
the child.
As part of this, the newspaper would like an online presence of parents who
have been through all this.
If you are interested, please answer the following questions and email them
to rquigley@statesman.com and aball@statesman.com>
Please make sure you put the words PREEMIE PROJECT in the subject line so we
are sure to see it. Here's what we need:
Your name
Your child's name
Your city and state
Hospital photos and current photos of your child.
If you have videos of your child on YouTube, please send us a link.
Then, please answer these questions (there is no word limit):
What were the circumstances of your premature birth and at what gestation
did the baby arrive?
What was your NICU experience?
What has been your experience since your child came home?
Please discuss any mental health effects you or your child have experienced
as a result of prematurity (depression, anxiety, post traumatic stress
disorder, marital stress, OCD, bipolar disorder)
Please discuss resources you used to get your family through the
stressful/emotional part of this time. (counselors, spiritual leaders, etc)
Thank you so much for your help. Your kindness is greatly appreciated.
Andrea Ball
-----------
My response:
Your name: Shannon *****
Your child's name: Darsie and Elise *****
Your city and state: Port Orchard, WA
Hospital photos and current photos of your child.
Darsie:
Elise:
What were the circumstances of your premature birth and at what gestation did the baby arrive?
Darsie
With Darsie's birth, I had a routine doctor visit at 27 weeks that showed a high blood pressure. We did the PIH labs and everything came back normal. That following Friday evening was particularly rough. I didn't feel well, I didn't sleep well, and I knew that something was just plain wrong. My whole back ached and things just weren't normal. I took my blood pressure at home and it was so high that I thought the machine was broken. Saturday morning I called into the doctor office and they asked me to go to the local fire station and have them take it to confirm either the reading or that the machine was broken. The fire station confirmed my high reading and off to the hospital we went. At the hospital, the nurses immediately gave me a steroid to mature the baby's lungs and did everything in their power to lower the blood pressure. After the baby started suffering because of the blood pressure, it was decided that she needed to be born and by Sunday at 9pm, she was here weighing in at 1 pound 12 ounces at 28 weeks and 1 day.
Elise
With Elise, I was taking every precaution in the book. So, when 33 weeks rolled around and my blood pressure started being weird, I knew that we were going down the preeclampsia road again. I went to the doctor on Tuesday and of course everything was normal. By Thursday evening I was experiencing high readings and off to the hospital we went again. I was monitored and given meds to lower but again, nothing was working. Steroids were given for the baby's lungs. On Sunday at 7am my doctor decided that Elise needed to be born. I was put completely under and she was here by 9am weighing in at 3 pounds 7 ounces at 33 weeks and 5 days.
What was your NICU experience?
Darsie
Darsie was in the NICU for two and half months. She was on the vent for only 24 hours but on oxygen (either CPAP or cannula) for a month and a half or so. She had a grade IV IVH which has resulted in hemiplegia cp on the right side of her body. We had a pretty decent experience, visiting every day and really involving ourselves in her care. We had numerous "scares" but they all resulted in nothing really major (except for the bleed of course).
Elise
Elise was only (as if there is an "only" involving the NICU) for two and half weeks. She was mainly needing to be taught to eat.
What has been your experience since your child came home?
Darsie
Darsie was diagnosed with hemiplegia cp on her right side due to the IVH on the left side of her brain. Since she was one, we have been involved with early intervention and receiving PT, OT, speech therapy, and hydrotherapy. She turns 3 in September and transitions to the school district, so that should be "intersting". She wears a DAFO on her foot and a brace on her hand.
Elise
Elise is only 12 weeks old but has developed plagiocephaly. At this point she has not been casted for a helmet.
Please discuss any mental health effects you or your child have experienced as a result of prematurity (depression, anxiety, post traumatic stress disorder, marital stress, OCD, bipolar disorder)
We have been pretty lucky in the mental health department. I think with Darsie we were just so focused on moving forward that we didn't have time to stress out. There was some relationship stress and more arguments that normal, but everything worked out. I think with Elise, because we had a 2.5 year old at home and it was almost impossible for Jeff and I to visit Elise at the same time that there was more stress than with Darsie. Jeff was working from 8am-7pm and then visiting her and not getting home until 10 or 11. I was recovering from a c-section, watching Darsie during the day, and fitting in a 2-3 hours visit with Elise. We were very stressed from that and when she came home, we had some difficulties adjusting to having two children and everything that resulted. After she was home for a couple of weeks, I switched from pumping full time to breastfeeding and I would say our most difficult adjustment period was during that time.
Please discuss resources you used to get your family through the stressful/emotional part of this time. (counselors, spiritual leaders, etc)
None.
10 comments:
I thought this was SO interesting to read. Thanks for posting it.
I hope you don't mind that I add a link to your page on my new blog about my 24 weeker Lincoln. Let me know if that's a problem. I have loved reading yours!
In response to your comment: I think most of them are probably dead/fast asleep at this point. We'd read about people putting hornet's nests in their freezers to kill the hornets so the nest would be preserved (WHY), and I've seen everything from overnight to a week.
At least since we're moving in a week, we've already pretty much cleaned out the fridge and all that's in there now are half empty bottles of forgotten vodka and my popsicles. And the hornets in plastic bags.
Hi Shannon,
A really great post, just wanted to suggest a Cranial Osteopath for Elise? I know we have had a great success using them here in the UK. They can treat all sorts from colic to cranial problems.
Sending our nest wishes
from Abi and family (UK)
I just wanted to second Swistle's comment that this was a very interesting read. Also, made me feel very grateful that thanks to the "annoyances" of bedrest and Brethine, we have been lucky enough to keep this baby in my belly long enough to almost certainly avoid a NICU stay. Thanks for that perspective, I really needed it today!
What an interesting, informative post. And how neat that you were asked to share your experiences! Will you get a copy of the finished article?
sorry if you took my offer the wrong way....i didnt know why i offerend wince i dont know you. im so sorry
i meant since not wince.
Thanks for the people who are sharing information about cerebral palsy on this website. And thanks for maintaining this useful website. You may visit AboutCerebral Palsy site http://www.about-cerebral-palsy.org to find some more good information about cerebral palsy. You can even send questions to doctors and get feedback and see if people with cerebral palsy will be eligible for lifetime benefits.
Post a Comment