Some people were born unorganized; I, however, was not! It continues to amaze me how people can be spontanous or live without a planner or calendar - I'd be lost without my color-coded planner and daily to-do-lists. Needless to say it sends me in another world when people mess with my "plan". If this baby teaches me at least one thing it will simply be that I am no longer in charge of or should plan on anything.
Today's dr. appt. went well (hidden meaning for yup you gained some more weight), and the baby's heartbeat was around 150. So when I asked if we were all set with the C-Section date I was a bit surprised to hear that our nuerosurgeon was going to be gone on vacation during that time. With red flags going off in my head, they quickly told me that another surgeon would be doing the back procedure and possible shunt surgery if needed. My second surprise was to find out the back closure will not be done until the day after the surgery (still have to find out why - new consult already scheduled). 3rd surprise - no operation rooms are available on the day that they want to do the delivery - they called us later to tell us they bumped someone else out & made a spot. At this point I just gave up! So as of now, (no longer in ink - maybe penciled in) the baby is scheduled to be delivered on Aug. 17th, and the back surgery is scheduled for the 18th - unless something (more than likely) comes up.
On to better news! Robby FINALLY received a consult appointment with the sleep clinic. It still takes him about 2 hours to go to sleep & he wakes up at least 3-4 times a night. While his talking in his sleep can be funny at times, his sleep terrors aren't. We've been praying for an appointment since April, and we finally have one scheduled for late July. A sleep study won't be scheduled until Nov. (first available at the earliest), but I'm positive that at least we are moving in the right direction.
Other good news - our baby has been entered into a pilot program with Mary Free Bed where they meet the parents of kids w/ SB before the child is born. Hopefully this will get us off to a good start & we can begin scheduling therapy quickly after the baby is born.
Today I went to visit another baby w/ SB in NICU! Lewis is so cute, and we send our thoughts and prayers for him & his family for a speedy recovery. It's wierd to think that we will be there in about 2 months or less. The other families we have meet w/ children w/ SB have been really helpful - thanks so much!
So for now I better hang onto the planner & just get used to the changes and cancelations that are headed our way. If I truly did throw it out, I would forget everything!
The Mathews
Wednesday, June 30, 2010
Saturday, June 19, 2010
A Bang-up Day
Friday was off to a great start when some idiot hit me by Target on Center Dr. off of Alpine, and then he actually took off (not like Alpine wasn't busy and a ton of other people saw it happen)! To make matters worse I was supposed to be at MFM in twenty minutes. Clearly I have no control over anything anymore!
The baby decided to once again show us who was in charge as it sat breech AGAIN! So, no clear pictures of the baby's opening which I was hoping for. The baby is gaining weight (3 lbs. & 8 oz) and is at the 57%. Right now it is right on schedule with the due date of Aug. 27. The doctor said the baby's hydrocephalus looks good. A sac has also developed on the baby's back which is normal for babies with SB.
We sat through our first non-stress test - good thing it only monitors the baby's stress not mom's, and he/she passed with flying colors. It was moving all over the place.
On to MMPC - here the doctor said the baby's heartbeat was good (about 140). I also received no sympathy as the doctor and Tom hit it off by making fun of me :) Got to love it - that's okay I got my jabs in as well. They are trying to schedule our C-section for 39 weeks, but we have to wait and see if the neurosurgeon & plastic surgeon are available on that date.
Later I ended up at the police department to file an accident report from earlier in the day. I was pleased to find out that the guy actually called in to report the accident. Now we just have to wait for the insurance company to go after him for the deductible.
All in all, not a lot of new news, but that's okay. Baby's doing well and we are off for some much needed vacation.
The baby decided to once again show us who was in charge as it sat breech AGAIN! So, no clear pictures of the baby's opening which I was hoping for. The baby is gaining weight (3 lbs. & 8 oz) and is at the 57%. Right now it is right on schedule with the due date of Aug. 27. The doctor said the baby's hydrocephalus looks good. A sac has also developed on the baby's back which is normal for babies with SB.
We sat through our first non-stress test - good thing it only monitors the baby's stress not mom's, and he/she passed with flying colors. It was moving all over the place.
On to MMPC - here the doctor said the baby's heartbeat was good (about 140). I also received no sympathy as the doctor and Tom hit it off by making fun of me :) Got to love it - that's okay I got my jabs in as well. They are trying to schedule our C-section for 39 weeks, but we have to wait and see if the neurosurgeon & plastic surgeon are available on that date.
Later I ended up at the police department to file an accident report from earlier in the day. I was pleased to find out that the guy actually called in to report the accident. Now we just have to wait for the insurance company to go after him for the deductible.
All in all, not a lot of new news, but that's okay. Baby's doing well and we are off for some much needed vacation.
Thursday, June 17, 2010
A Whirlwind of News
April was a whirlwind of dates and news for us. In between Tom's frequent trips to MN for work and my track meets and practices, we took Robby with us to see the ultrasound of the new baby! It was one week later that we received news that the baby's pictures showed some areas of concern.
The second ultrasound and amnio test proved positive that the baby indeed had spina bifida - an opening in the baby's back which did not form over the spine. The opening is created within the first month of the baby developing. An average person's body is formed similarly to a zipper over the spine. For some reason, our baby's back did not close entirely. We left Maternal Fetal Medicine with heavy hearts but reassurance that everything would be okay.
May brought us more appointments with MFM, a nuerologist, and neo-natal doctors along with my monthly checks on the baby at MMPC. Once again our baby proved to be a true combination of Mathews and McWilliams as he/she stubbornly refused to let us see its back - it was sitting breech with its back against the wall. An hour and a half later (I refused to leave until they would tell us where the opening was) and two doctors later, they think the opening is at L3. L stands for lumbar (the lower poriton of the back) and 3 is the third vertebra down. Typically this area has nerves that connect to the baby's lower legs, knees, ankles, feet, bladdar, and bowel. Dr. Foody, the nuerologist, explained that we truly will not know the capabilities or limitations the baby will have until after it is delivered. He has seen cases of total limitation to using a wheelchair to some children running and playing soccer; we are hoping for the 2nd.
As of now, we do know that the baby will be delivered by C-section (as was Robby). Shortly after arriving it will be taken to NICU for stabiliation and prepped for surgery. The closure of the back is supposed to be done w/in 24 hours. One side affect that is very common is for the baby's head to swell with fluid "water" on the brain. If this occurs, the baby will need to have a shunt surgery. While we hope this isn't the case, only time will tell.
June brought on a mixture of events as well. I was introduced to several other parents of children with spina bifida (which have been wonderful in helping to answer questions about everyday life w/ kids w/ SB), exams, leaving school knowing that everything will be different from now on, etc.
Yes, life has been a whirlwind of events during the last several months. Having always been known for being prepared and organized, God has reassured us that maybe it's time for us to slow down a bit and enjoy each day as it happens. Please keep our family in your prayers.
The second ultrasound and amnio test proved positive that the baby indeed had spina bifida - an opening in the baby's back which did not form over the spine. The opening is created within the first month of the baby developing. An average person's body is formed similarly to a zipper over the spine. For some reason, our baby's back did not close entirely. We left Maternal Fetal Medicine with heavy hearts but reassurance that everything would be okay.
May brought us more appointments with MFM, a nuerologist, and neo-natal doctors along with my monthly checks on the baby at MMPC. Once again our baby proved to be a true combination of Mathews and McWilliams as he/she stubbornly refused to let us see its back - it was sitting breech with its back against the wall. An hour and a half later (I refused to leave until they would tell us where the opening was) and two doctors later, they think the opening is at L3. L stands for lumbar (the lower poriton of the back) and 3 is the third vertebra down. Typically this area has nerves that connect to the baby's lower legs, knees, ankles, feet, bladdar, and bowel. Dr. Foody, the nuerologist, explained that we truly will not know the capabilities or limitations the baby will have until after it is delivered. He has seen cases of total limitation to using a wheelchair to some children running and playing soccer; we are hoping for the 2nd.
As of now, we do know that the baby will be delivered by C-section (as was Robby). Shortly after arriving it will be taken to NICU for stabiliation and prepped for surgery. The closure of the back is supposed to be done w/in 24 hours. One side affect that is very common is for the baby's head to swell with fluid "water" on the brain. If this occurs, the baby will need to have a shunt surgery. While we hope this isn't the case, only time will tell.
June brought on a mixture of events as well. I was introduced to several other parents of children with spina bifida (which have been wonderful in helping to answer questions about everyday life w/ kids w/ SB), exams, leaving school knowing that everything will be different from now on, etc.
Yes, life has been a whirlwind of events during the last several months. Having always been known for being prepared and organized, God has reassured us that maybe it's time for us to slow down a bit and enjoy each day as it happens. Please keep our family in your prayers.
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