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BOTL UPCOMING MAINTENANCE
Hi Everyone, as mentioned in my introduction post, BOTL needs quite a bit of updating, patching and whatever else I might come across. Over the next few weekends BOTL may be unreachable on occasion as I do migrations or updates, etc. Just be patient - we'll be back! I'll generally try to keep these maintenances until later in the evenings.
Could use some positive vibes!
- Thread starter Mr. Guy
- Start date
Prayers
- Joined
- Dec 22, 2010
- Messages
- 1,770
Mr. Guy,
My prayers will be with you and your wife. 16 years ago we went through a 2 week period of having to wait on the specialist. I don't want to come off as an evangelist but I encourage you both to put your concerns and fears in prayer. We prayed together and separately and it brought us closer together. We also knew that He gives us the gift of life and has a plan. I also reassured her that she was doing all the right things with the pregnancy as women sometimes want to blame themselves should anything be less than perfect with the child. Love her hard brother and turn to the Man.
God bless you both.
My prayers will be with you and your wife. 16 years ago we went through a 2 week period of having to wait on the specialist. I don't want to come off as an evangelist but I encourage you both to put your concerns and fears in prayer. We prayed together and separately and it brought us closer together. We also knew that He gives us the gift of life and has a plan. I also reassured her that she was doing all the right things with the pregnancy as women sometimes want to blame themselves should anything be less than perfect with the child. Love her hard brother and turn to the Man.
God bless you both.
c.ortiz108
The fly in the ointment.
Good vibes coming your way.... No experience remotely similar (gratefully). All I can say is if the doc thinks it's okay to wait until the 18th, that's encouraging. Can you get a second opinion locally, just for a little more peace of mind? In the meantime, just try not to catastrophize too much - dwelling on worst case scenarios and all that because it will do no good. "Know that you don't know" as they say.
Positive thoughts and vibes are heading your way. I hope everything works out for you and the family.
Thanks again for all the support. The stress was starting to get a little too high, and your messages and PM's has definitely helped to keep things in perspective. It sounds like we are just getting to the start of some difficult times, but it's good to know that there are folks keeping us in their thoughts.
To add a touch of positive on the situation, I was told the sex after the ultrasound, where my wife is waiting until we officially meet the baby. I get to share a special little secret with my kid that no one else will know until July! How's that for nerdy first time dad stuff
To add a touch of positive on the situation, I was told the sex after the ultrasound, where my wife is waiting until we officially meet the baby. I get to share a special little secret with my kid that no one else will know until July! How's that for nerdy first time dad stuff
For those who might be interested, we had our first big appointment with the specialist. I don't think anything was good or bad news necessarily, but now at least we have something of a plan of attack. There are some physical "indicators" of chromosome issues so step one will be to run tests on the amniotic fluid. If the tests don't reveal something that will prevent maintaining life after birth we will be looking into a hospital in Denver to deliver and send baby immediately to surgery to repair the open spine and install a shunt to drain fluids around the brain. If baby has only moments with us, we will stay at home and deliver locally since repairing the spina bifida will not be productive.
We're doing our best to keep positive, but we know we're in for a roller coaster ride from here on out.
We're doing our best to keep positive, but we know we're in for a roller coaster ride from here on out.
Continued prayers for you and your wife!
An update for anyone willing to read it.
Our baby Rose was born 4 weeks early on June 9th! My wife called me at work saying she was going to the emergency room. A little under 2 hours later we were a family of 3. Rose was born with the myelomeningocele version of spina bifida, meaning her spinal cord was exposed. As a result, she also had severe hydrocephalus, and it took her a good two weeks to show any movement below the waist. We were lucky that the hospital in state was able to accept her to their NICU and only 6 hours after her birth I was on a Life Flight airplane with her headed 400 miles East. The first surgery to tuck her spinal cord back in and repair her back was performed the following morning. The wife made it only 4 days later, thanks to her parents' help with driving. Rose had her second surgery 8 days after her birth to install a VP shunt to begin draining the fluid from her head. When comparing images of a "normal" brain to those of Rose's brain, I don't know how she made it! We spent 3 weeks at the NICU, a comparatively short amount of time for what she was facing. That should imply how absolutely resilient she has been! Even at only just over 2 months old she is developing and progressing much faster and beyond the expectations we were prepared for by the Docs. She still has no sensation below her lesion point, L4 for those who know, but both legs show pretty decent movement at the hips so we are hopeful she'll gain some level of walking at some point. She has been going through a set of casts on her right leg to correct club foot, and she'll have another surgery on Tuesday to help even more. The first week of September will have us back at the Children's Hospital for surgery on her skull, the shunt is "working too good" as the neurologist said. The fluid drained a little too fast and her skull plates are fusing too early, she has a very tall, elongated and narrow skull that could impair proper brain growth. She'll have to wear a shaping helmet until at least 1 year of age, but for right now, that's the last scheduled surgery on the books, so we're pretty excited! We have some sort of doctor/therapist appointments 4-5 days per week, but luckily all but 2 of the specialists we see have outreach offices in town so travel across state has been minimal. She's facing a pretty difficult journey, but one a I know she can handle!
Thank you to all for your support during this trying time!
Our baby Rose was born 4 weeks early on June 9th! My wife called me at work saying she was going to the emergency room. A little under 2 hours later we were a family of 3. Rose was born with the myelomeningocele version of spina bifida, meaning her spinal cord was exposed. As a result, she also had severe hydrocephalus, and it took her a good two weeks to show any movement below the waist. We were lucky that the hospital in state was able to accept her to their NICU and only 6 hours after her birth I was on a Life Flight airplane with her headed 400 miles East. The first surgery to tuck her spinal cord back in and repair her back was performed the following morning. The wife made it only 4 days later, thanks to her parents' help with driving. Rose had her second surgery 8 days after her birth to install a VP shunt to begin draining the fluid from her head. When comparing images of a "normal" brain to those of Rose's brain, I don't know how she made it! We spent 3 weeks at the NICU, a comparatively short amount of time for what she was facing. That should imply how absolutely resilient she has been! Even at only just over 2 months old she is developing and progressing much faster and beyond the expectations we were prepared for by the Docs. She still has no sensation below her lesion point, L4 for those who know, but both legs show pretty decent movement at the hips so we are hopeful she'll gain some level of walking at some point. She has been going through a set of casts on her right leg to correct club foot, and she'll have another surgery on Tuesday to help even more. The first week of September will have us back at the Children's Hospital for surgery on her skull, the shunt is "working too good" as the neurologist said. The fluid drained a little too fast and her skull plates are fusing too early, she has a very tall, elongated and narrow skull that could impair proper brain growth. She'll have to wear a shaping helmet until at least 1 year of age, but for right now, that's the last scheduled surgery on the books, so we're pretty excited! We have some sort of doctor/therapist appointments 4-5 days per week, but luckily all but 2 of the specialists we see have outreach offices in town so travel across state has been minimal. She's facing a pretty difficult journey, but one a I know she can handle!
Thank you to all for your support during this trying time!
AMEN BROTHER!
Praying for Rose and your family. My son had a shaping/moulding helmet for 8 months. If you have any questions about it, I'd be more than happy to share our experience. Thanks for sharing. I'll be following this thread and continuing to pray.