I really hope you all don't mind that I've done this. I was thinking tonight, for various reasons, and decided I would like to get this thread going again. For one reason - it would be nice for it to be there, for other people who have LO's with SB to read. Reading it back, it makes me quite proud because I think I handled the situation well.
From now on I'll try my best to post updates on here again. We have 5 appointments within the next two months and I would be a board hog if I made separate threads
To any of the new ladies, if you are reading this for the first time, it may make you cry. It may even confuse you.
First of all, baby is a girl. We also found out she has Spina Bifida and we've been referred to a specialist hospital so they can see in more detail. We don't know HOW severe it is but we do know it isn't as severe as it can get.
However this u/s turns out, it doesn't change the way we feel. SB babies have an 80% survival rate at the most severe the condition can get, so we have to feel good about that.
Not sure what else to say.. but.. other than the spinal defect baby looks fine and is growing at the correct rate. Will find out more at our u/s on thursday and will keep you all posted
We found out today Tegan has lumbar-sacral spina bifida. I've been reffered for an MRI scan on Tuesday and will be seeing a neurosurgeon. The doctor said she'll more than likely be paralyzed from the waist down, have no bladder function and won't be able to open her bowels but, we can't know the full details until she's born.
Nothing will change the way we feel; she's our baby and she means the world to us
She'll be operated on before she's 48 hours old and we have to go to a specialist hospital all the time now (an hours drive). I'll also give birth there.
So, as today is Tuesday (haha gained two days.. not thursday :ROFL:), its time for another update! First things first, the MRI scan today was a very strange experience. I know if my partner wasn't in the room I could very easily have gotten really scared. I hate small spaces and only my head was poking out of that big machine! I don't know if you have Polo mints there (round with a little hole in the middle) but it was kinda like a giant one of those.
So we arrived at the hospital for 7.45am and followed the 'black line' (the hospital we're now using is one of the biggest in the north of the uk) to the MRI suite. And waited for ten minutes. A nurse came and told us that we had to remove all metallic objects from our bodies and I had to change out of my jeans into a very TIGHT pair of hospital trousers.
We talked a little, she gave us a little bit of advice an then we went into the room, I got on the bed thingy and they did the scan which lasted about 20-30 mins.
After this, we went into the little room where the images come up on the screen. The Dr. showed us every image of our little Tegan (who is still looking beautiful by the way) and went through them, in detail. She has fluid on her brain already, which means an early delivery - latest 34 weeks - and her spinal cord comes to the surface about level with her hips. She has a lovely liver, heart, face, her eyes are perfect, and she has chubby, gorgeous little baby legs She is looking so big now!!
We know she'll probably have to be shunted at a very early age (they put a piece of plastic into the brain of baby - tube shaped - that goes down into the abdomen which then re-absorbs the cerebro-spinal fluid (fluid that is normally around the brain which cannot drain as Tegan's spinal cord is malformed). She'll also have surgery for the closure and a lot of other surgeries aswell, and will probably be born by c-sec.
So... I now have a maximum of 14 and a bit weeks before I am going to be meeting my little girl. I am really, really excited to meet her. I'll be having U/S's every two weeks which will watch the fluid on her brain and if it gets a lot worse, she'll be delivered before then. If she is a good girl and manages to be relatively OK until 30 weeks I have to have another MRI to give the paediatric neuro-surgeons a better image and so they have more idea what they will be operating on.
I cannot give that doctor enough credit, by the way. She was fantastic, and told us she saw a boy with worse SB than Tegan's running around the children's hospital when he was 2 and a half
Aaaaand on a little less serious note... I was placed on my left side for the MRI, pillow between my legs, the works. Well, I went for a pee before hand but after about 20 mins or so in the machine, I kept feeling little pokes and jabs everywhere including my bladder. I felt like unless Tegan sat still and behaved, my bladder would spontaneously empty itself right there So, the scan was finished. I didn't breath a word, but Tegan was moving so much and so fast all the pictures were blurry She is such a character already, her way of saying.. "Ma!!!!!!! I know I'm gorgeous, but come onnn we need to get up and walk a little."
We also went shopping.. we know she'll be early, so we bought some early baby clothes which are cute and snuggly and I cannot wait to meet my baby. She means the world to me already.
Soo.. This isn't that much of an update but I had an appointment with the midwife today so I thought I might as well update here
I think I have a UTI. Ive been having a few BH's every night but the other night after DTD I had one big contraction that was painful and really stopped me in my tracks. Also having trouble with needing to pee every 20 mins
So we did the normal appointment thing, blood pressure (120/70 - normal for me), listened to babys heartbeat (which was normal) had my uterus measures - normal if not a little big, talked about what we need to do in case of an emergency (get an ambulance to the local hospital and be checked and then a transfer) and that was about it. Didn't get weighed, Or anything. So basically just a normal appointment I have another one in three weeks time and I have to reschedule my the U/S because my lovely OH is taking me and my ever growing bump on holiday (vacation) for a week
Hope you are all well
New update to follow - will be in a separate post.
Added June 26 09
So here is a round about list of Tegan's hospital admissions to date - including surgeries etc. I'll add it to the first post when I am done.
Aug. 17 08
Tegan is born.
Admitted into SCH at 1 hour old.
Aug 18 08
Defect in back is closed. (7 hour op.)
Aug 27 08
VP Shunt fitted
Sept. 3 08
More stitches added to Shunt
Sept. 6 08
Stitches added to shunt again
Shunt revision (new parts added)
More stitches added
Shunt taken out
Shunt #2 Inserted
Discharged from hospital
One night spent in SCH - told nothing was wrong
In hospital for 8 nights.
MRI done under GA.
So to date, Tegan has had 3 CT scans, 2 MRI scans, 9 operations and 10 General Anaesthetics.