Sunday, January 23, 2011

First visit to SB Clinic

At 4 months we went to SB clinic for the first time. We love the head RN of our clinic! She is so sweet and just loves Little G. We had met her while I was pregnant and she came to visit Little G in the NICU after birth. Our first visit was pleasant and successful. We had taken Little G for a Renal u/s and a Head u/s a few weeks prior so we were getting the results that day at clinic. We were a little anxious but fairly confident in the outcomes (a mother's intuition is alwaus dead on). The renal u/s showed no reflux or backing up in the kidneys- yay! The urologist said the u/s looked really good. Great news for us but not much of a surprise. Little G pees constantly! He does dribble however and we really don't see any type of stream (only during a sneeze or cough). I suspect he has a loose sphincter but we will have to wait to find out. No problems in the poop dept. Next, we saw our neuro. Little G's ventricles are still stable and in normal limits as they have been since birth. Sigh of relief still showing no signs of needing a shunt! We will have our next head u/s when G is 7 months. Last, we saw the ortho. Perhaps the one we were most anxious to see. Little G's left foot has always drooped and recently his left hip started popping as well. This really concerned us. The ortho said he has Developemntal Hip Dysplasia. DHD can happen in any child and isn't SB related but SB complicates it since the muscles don't always work properly to hold the hip in place. Little G will need to wear a hip abbductor for the next 3-6 months for around 16 hours a day. The hip abductor basically holds his legs in a "frog" position to help form the socket the Little G is lacking. Surprisingly, Little G doesn't seem to mind wearing it. We also found out that Little G's left leg has Internal Tibia Torsion (ITT) which means in his lower leg the tibia is twisted. Again this is common in all babies- has more to do with position in the womb as does the hip dysplasia. My husband and brother both had it. This is something that should correct itself once he starts walking and/or by the age of 3. The ortho felt that the hip and ITT was what was causing his foot to droop. This was such a relief to us! All this time we had thought it was nerve damage and that nothing would help it. So we actually felt like this was a good thing when normally most parents would be devastated (but with SB everything is relative!). So all in all it was a good visit to clinic. One thing I didn't like about clinic is that you don't get to choose what dr.'s you see. You see whichever neuro, uro, and ortho that are scheduled that day. But the nice thing is you get all your dr. appt out of the way at one time in one place. Still debating whether we want to stay in clinic with random dr.'s or choose a dr. in each field to see independently. We will probably go to clinic at least a couple more times before making a decision.

Wednesday, January 5, 2011

The Big Arrival!

My C-section was scheduled at 38 weeks and true to form my little one decided to come on that day but early! At 5:00 am my water broke (c/s was scheduled for 4:30 pm). He clearly already had a mind of his own =). Since my water had broke and his sac was rather large (think Grapefruit/large orange) the dr. wanted to do a vertical incision. EEK! Not what I had pictured but it was best for Little G. At delivery they discovered Little G had ruptured his sac...since all the amniotic fluid was gone and with all his wiggling, he had ruptured the sac. Panic set in!! Especially when the doctor followed that statement with "His legs aren't moving"! I thought, "How could this be??? I felt him kicking for the last 20 weeks!!" They quickly wrapped his back in a saline soaked bandage and sent him off the NICU. I was able to hold him very briefly (well he was laid on my chest so I could see him) before being taken to the NICU. I couldn't wait to get out of surgery and to the NICU to see my little man. Once the anesthesia wore off I was taken to my room, but not without a quick stop to the NICU to see my little man. And yes, he could move his legs! He must have been in shock in the delivery room from birth.

Here is a picture of him right after delivery in his bandages (they wrapped all his back and top of legs)

And here he is on the NICU (just to give you an idea of what it looks like with all the machines)

The next day Little G would need to have surgery to close his back. Luckily for us we were prepared for this. We had met with several neurosurgeons during the pregnancy and had already selected the best choice. This made it much easier!

Here is Little G headed off the surgery:

And here he is post surgery (off the respirator and IV but does have a feeding tube):

There is only a piece of gauze covering the incision inside the diaper, no tape or anything!

Surgery was a success! Little G pulled through like a champ. We did get a bit of bad news though...the  specialists had been wrong about his lesion level (this is VERY common so do not get your heart set on a level till after surgery!!!). Instead of a S2-S5, Little G had a lesion at L5-S1. He would need leg braces to walk. But let me tell you...all the worrying I did about his condition while I was pregnant disappeared when I laid eyes on him. I had heard this from SEVERAL moms but I didn't understand till G arrived! Normally this would have been upsetting news but I didn't even flinch. I knew my little man was going to be just fine. He was absolutely perfect!

Little G was on pain meds and sedatives (he was very active after surgery--tried to pull out the respirator and IVs not to mention trying to roll off his belly) for the next 2 days. They took G off the respirator within 24 hours of soon as he was able to breathe on his own again. After getting rid of the IV they had to put in a feeding tube so he could get nourishment. I still was unable to feed him because the dr. hadn't cleared him to be picked up yet. I had only been able to lay him on a pillow on my lap up until this point. At 5 days old he was off of all the machines except heart monitor and oxygen monitor (standard in NICU) as well as the feeding tube.  Also, he was promoted to the lower level of the NICU where we were able to care for him ourselves for the first time. AND....the dr. cleared him to be held! I could finally hold him like a regular baby! And I could feed him! He had his first bottle on day 6 and within 24 hours he was taking the full 2 ounces every 3 hours and could have his feeding tube removed! He had to take his bottle consistently and finish it for 24 hours before they would remove his feeding tube.

His is a picture of his incision right after surgery (looks scary but it DOES get better!) And yes, he does have an IV in his head but this is only after he pulled it out of both hands...last resort!

Looks much better now... hardly even noticeable (here's a picture @ 2 months). His scar basically still looks like this but less pink and he lost his "tail"--the scruff of hair on his lower back =). Little G is now 5 months.

After 8 days in the NICU Little G was released! He still was not showing signs of hydrocephalus, his ventricles were stable and within normal limits. SB babies usually develop hydrocephalus after back closure if it isn't present in utero but can happen anytime during the first year. We would have to bring him back for head u/s over the next year to monitor for hydrocephalus. So we were ecstatic to hear that his head was stable! And even more ecstatic to take our little man home!

Here he is ready to go home:

Getting the news...

When I was 20 weeks pregnant, my doctor called and said there was a problem with my blood work. My heart sank! My AFP levels were off the charts and I had a 1:4 chance of my son having Spina Bifida. I would have to see a specialist for a Level 2 u/s. The u/s confirmed our worst fears. Our son had Spina Bifida myleomeningocyle. Good was low. The dr. thought it was S2-S5 and he didn't have hydrocephalus in utero. Bad news...his back was open with a large protruding sac filled with spinal fluid. He would need surgery 24 hours after birth to close his back and I would need a c-section at 38 weeks.

We went home that day and started our research. And boy! Is the internet and Google cruel to SB! Most of what we read was not true! Thankfully I found a community of SB moms on and they were a great resource! Also, I searched high and low for blogs of moms of SB kids so I could read and see pictures of their kids (a couple of my favorites were "Our Little Gibblet" and "Tear and Mend"). This was so helpful in showing me that SB kids ARE normal and healthy! I loved seeing kids and how happy they were. This was so reassuring to me. I also reached out to these moms through email and got lots of reassurance and help from them. You can ask SB moms anything and they are happy to help you and answer any of your questions!!

One of the things I read about was the lemon sign on the u/s. One of the things the dr. will look for in the level 2 u/s is at the head to see if it has a "lemon" shape. Yes, I did think my son would be born with a head shaped like a lemon...but NO he wasn't! Here is a picture of it in the u/s:

And this is a picture of him at birth...see his head is perfectly normally shaped =)

The dr. also took LOTS of pictures of his spine...but we couldn't tell anything from them. I also opted to have an amnio done to make sure there weren't any other problems with our little man. The amnio came back clean and the procedure was pretty simple. I felt no pain and I loved seeing my little man's spunk in the u/s during the amnio. He kept swiping at the needle like he was saying "Get that thing out of here! I'm perfectly fine!!"

Also, when I was pregnant and even after Grayson was born, I spent hours scouring online looking for anything that could tell me about which vertebrae corresponds with what nerves...and what muscles the nerves controlled. I could never really find anything that could explain this clearly to me. A little while ago I found this blog and it has a wonderful explanation of levels, lesions, nerves and Spina Bifida in general.