We just finished up a day of revolving doctors. Seriously that is probably the best way to describe today!! We were up early this morning and headed out to the "clinic."
This is where we come to our first funny story of the day.....
I swear I was told this hotel is "across the street from the hospital." I very well may have made that up...but either way...We headed down to the lobby this morning bright and early and told the front desk that we needed to get to the Doctor's Office Tower, asking for the best way to get there. She quickly gave us instructions of 3 right hand turns essentially taking us around the block and we were off. It became VERY clear to us as we headed out with the gentle drops of ice ruining my good hair day that I should have been more specific when asking for the best way to get to our final destination....specifically I should have indicated that WE WERE WALKING!! Long story short, thank goodness for smart phones with GPS! We were able to cut our stroll short by cutting through the Vanderbilt campus and 15 minutes and a few frozen fingers later we had arrived!!
We started off the day with an ultrasound that took approximately 300 hours! I mean seriously, I had to take a potty break in the middle!! I am not sure what on earth was left to look at on this baby since we have already had what feels like 45 ultrasounds and an MRI but I just did what I was told. We did get to see a few cool things.....
-First of all we saw big time leg movement - this boy is kicking those legs for sure which is super exciting and I hope a glimpse of what is to come in our future!!
-Second we got to check out every millimeter of this child's heart - and I do mean every millimeter....I thought this lady was NEVER going to move on!! All looks good! He's got 4 chambers, no holes and everything seems to be pumping as it should be
-Third - NO CLUB FEET!! Hip Hip Hooray!! (For those of you that don't know, club feet are when the feet are rolled in and is a common finding in kiddos with spina bifida)
No other new results from the ultrasound but we were able to confirm that the defect starts at approximately the L4 level. That is a low defect which is good and according to research, kiddos that have this surgery on average function 1-2 levels lower which means this little guy could actually function at more of a L5 or S1 level – which is a really big difference!!
After the ultrasound was complete we got moved over to a conference room where we spent the rest of the day. It was hysterical – you just never knew who was going to walk through the door next! We literally talked to 7 different specialists today and did not move our butts off the chairs (not counting the 432 potty breaks that I took) the entire time!
We talked to the neurosurgeon Dr. Tulipan, who as my sister would say is “kind of a big deal.” This man has literally performed more of these prenatal spina bifida repairs than anyone else in the country!! Apparently this man is the guy who pioneered this whole procedure – like I said, kind of a big deal!! He was very nice and agreed that we appeared to be excellent candidates. He even offered second opinions later if needed for our little guy!! I figure it's always good to know people :)
The neonatologist was next. This man was very funny – a nervous Nelly for sure!! He indicated that he is still not convinced that this surgery is the way to go for many babies – he stated that he feels that often the risks and effects of arriving prematurely may be more harmful than the positive effects of correcting the defect prior to birth. But…he told us several times that he feels like we are one of the few that are excellent candidates!! Apparently that is a really big deal – because several doctors following him today seemed very surprised when we shared what he told us. He stated that because of my good pregnancy history and the low level of baby’s defect he feels that this surgery could make a huge functional impact in this little guy’s life long term.
I asked him about what he expects to see when he gets these little guys in the NICU and he said that in his research these kiddos actually tend to do better than their premature counterparts – He said that because they have been essentially born twice, their body has gone into survival mode early. He said he sees better lung development, fewer brain bleeds and overall better outcomes than babies who arrive prematurely without having surgery. (My co-workers will appreciate that info – I found that super interesting!!)
We talked with a social worker – who just wanted to make sure that we had a good support system at home (thanks to all of you that was an easy question to answer!!). We talked to a genetics counselor who essentially said I am not allowed to have any mommy guilt for this because there would have been no way to foresee this and likely no way to avoid it. She actually indicated that increased folic acid may have helped but there would have been no way to know that I needed it and no way to be sure that increasing my intake would have actually changed anything….so on we go!
We talked to two maternal fetal medicine doctors (a fancy name for an OB and also called MFM’s) – One of which went through all the details of the surgery – I’m sure not all of you are interested in this but I’m going to share anyway….if you aren’t interested just skip down to the next paragraph!! They give me a combination of general anesthesia and an epidural. They do a vertical incision – no more bikinis for me (that is a HUGE joke – the boys took care of that one forever!!) They take my uterus out of my abdomen and complete another vertical incision. The baby is then positioned and Dr. Tulipan steps in to do his magic – they joked that he gets all the glory but his part of the surgery only takes about 30 minutes of the 3 ½ hours total! Essentially they are completing surgery under water as they attempt to keep as much of the amniotic fluid in my uterus as possible. They then stitch up my uterus with dissolvable stitches, a plastic surgeon is apparently involved to help make sure they are able to get a water tight seal and then staple me back up. (Girls at Wolfson – I asked about a video….They said they actually do video the procedure but it is not given to the patient :( I was promised pictures though – and I’m not giving up on the video just yet) :) The doctor said they will keep my epidural in for the first 24 hours and indicated that I look basically like a hot mess. I’m in the labor and delivery version of ICU with one on one nursing and constant monitoring. After the epidural is removed, they have me up and moving a little – don’t want any blood clots and keep me on pain meds – said they don’t want any extra stress that pain would cause. The average stay is 6 days so on Monday if everything has gone as planned I get wheeled over for an ultrasound to check fluid levels and they remove the staples and send me on my way home!
Our big scare today was my stupid medication….I have been battling a super annoying cough for weeks and not doing much about it because I’ve just had other stuff to do frankly!! I finally gave in and went to see my doctor late last week. She yelled at me for not coming to see her sooner but said she was going to do everything she could to get me where I needed to be for surgery. She put me on an inhaler with instructions to use it 2x/day and said if I was still coughing Monday to call her. I did just that and she decided to put me on steroids – well you would have thought today that I told them I was taking cocaine!! Every doctor that came in to see us asked me about it, asked why I was on it etc. I had no idea 4mg of prednisone for 6 days would cause such a ruckus!! One of the MFM’s said she would mention it to the anesthesiologist and have him make the final call. She indicated that he might have me do a chest xray and that if he was uncomfortable with it we may have to postpone surgery!! AHH!! Talk about making me feel guilty for not going to the doctor sooner!! A bit later she returned with good news though – said he wasn’t concerned and would just “pump me full of antibiotics.” Works for me doc!! You’re the boss!! (Answer to prayer!!)
Finally we talked to Mary who is the nurse coordinator of this whole crazy group. She essentially summarized everything that had been said and asked what we thought about proceeding. We assured her that they hadn’t scared us bad enough to back out yet!! She went over what Monday will look like (that’s our pre-op day) and said we are officially on the schedule for Tuesday at 7:30am!!
So there it is – It was a crazy busy day but full of good news and some amazingly talented doctors. We are in some pretty amazing hands. It was so obvious that every single person we met with today loves what they do and has such a passion for this procedure. You can also tell that they really take care of the whole family – Made sure Stephen knew exactly what to expect and promised lots of updates during surgery to help him relax as much as possible. Everyone we met with indicated that we are the “perfect candidate” for this surgery and seemed to think that doing this could make a huge difference for this guy! Everyone that we met with also indicated that bed rest following the surgery is by far the hardest part but also the most important. They all said that most of the women who have not been able to carry to the golden date of 37 weeks have admitted to not following through with their bed rest guidelines...It was like they could tell that I have trouble sitting still!! I know it is going to be unbelievably hard but I think I’m just stubborn enough to follow through with everything they ask simply because I am bound and determined to make it to 37 weeks!!
Thank you all for the prayers! They are so appreciated and definitely felt today! I don’t think we could have asked for things to go any better!! Now, to get home and enjoy my last weekend of freedom!! Oh hunny….I have a few things to add to your hunny do list :) It's going to be a BUSY weekend!!