So, it's been a long time... I am now nearly 21 weeks pregnant (yay!) and have been greatly enjoying the world of pregnancy. Last week Aaron and I got some very unsettling news and I am finding that I really need to get back to writing down my journey so I can process everything that is going on. Here is what has happened since last wednesday... 20 weeks 0 days.
FB post Wednesday June 20th: So, baby Mac was naughty today for the ultrasound techs. And yes... I said techs. Baby was not cooperating for the first tech so she went and got another one to try and get the measurements she was unable to get done. It ended up taking nearly an hour to get everything done. The techs didn't tell me anything as far as how she was measuring and such. I have my OB appointment tomorrow and will get all that info then. She is definitely a mover and shaker though. And kicker and puncher LOL She didn't like the probe shoving her head around and she let ME know by punching me LOL
FB post Thursday, June 21st: Aaron and I found out today that our baby girl Natalie has a Neural Tube Defect (lay term Spina Bifida.) It is an open defect meaning the spinal nerves are exposed to the amniotic fluid. It is shocking to say the least and we are still trying to process everything. Continued prayers for our family would be much appriciated as we walk through this diagnosis....
APA post Thursday, June 21st (more details about the events of the day): so yesterday they were trying really hard to get a good picture of the spine and just couldn't get what they needed. Now I know why they were working so hard for that shot.... We learned today she has Spina Bifida.
The ultrasound from yesterday did not determin this.... actually it did not even suggest it. They could not ever get a good image of the whole spine but found that there was extra fluid in the brain and that parts of the brain were not shaped/formed correctly. So, I was referred to a genetic counselor and offered a level 2 ultrasound. We headed to Sacramento for a meeting this afternoon. Once again we met with the genetic counselor and then were taken into ultrasound. They have a much better quality ultrasound machine and the tech was amazing. She basically redid the whole anatomy scan and after a lot of coaxing they were finally able to get the shot of the spine they were looking for...
The perinatologist in Sacramento said the back of the brain was not shaped correctly. It's being pulled down by the spine from the NTD which is why there is the excess fluid on the brain. Right now the fluid is measuring 11mm. She said they worry the most when it is in the 15mm or above range so we are good there for right now. The excess fluid was the first trigger that something was wrong so it was a good catch, per se. There's also some kind of ridging on the top of the head that also indicated NTD.
so the perinatologist looked at all the images and came in and told us the news. She said it is a small opening and very low (S1 or 2) so that is good. The lower it is the better the outcome, in general. So, they will do a scheduled c section and the will likely go straight to surgery. the peri I saw is not the one who will bo doing the section. I will go to either Roseville or Oakland which has a pediatric neurologist and level 3 NICU. She said she can't say for sure how they will continue my care or when the section would be, but probably around 38 weeks. They said they can't say for sure how it will affect her since the spectrum is so wide with NTD. It's low, so that is really good. But, it can still affect her ability to walk and she will have issues holding her urine and bowels. As far as how it will affect her brain we can't know for sure until she's here and probably just as she grows. They will do another ultrasound at 30 weeks (I think) to check on the fluid in the brain, but they said as long as it stays below 15mm the outcome looks better. The higher it gets, the more pressure it is putting on the brain which can cause damage. They said the problem right now is that it is open to the amniotic fluid which is toxic to the nerves and damaging them...I was crying and told the genetics counselor that I felt it was my fault since i have the issues with malabsorption of vitamins and such and she said there was nothing I could have done either way.
APA/Parentropolis Post Friday, June 22nd: Just got off the phone with the genetic counselor a while ago and got some more information and direction.
1. As of Now, we will be delivering in Roseville. I will have a perinatologist I will be working with in Roseville for delivery who has experience delivering babies with SB. It is most likely that I will deliver via C Section. The Peri and pedi neuro will be coordinating my section and Natalie's surgery. She did say I may have opportunity to deliver vaginally depending on a lot of factors and that I can talk more about this with the peri and neuro. TheNeuro Surgeon in Roseville will call next week sometime to do a phone appointment or will have me come into the office.
2. Surgery in utero is a possibility depending on UCSF and their qualifications. The genetic counselor is going to call UCSF and see if my case would qualify. UCSF is doing a study right now, but it would be random on if I would get in utero surgery (test) or surgery after birth (control). They also offer surgery by referral and Kaiser would refer us there for inutero surgery if we chose to go this way. In utero surgery would probably happen at 25 weeks gestation. I don't know if we are even interested, but it's something to look into.
3. I asked if I would be allowed to have more than one person in the operating room so Aaron can be with Natalie and someone can be with me, but she said they will likely be keeping her in the room with me while they are wrapping her in sterile gauze and whatever else they will do while they are closing me up.
4. They also put in a referral for the SB center or whatever it is called in Oakland where all the Kaiser SB patients in CA go. She said they should call next week and will be able to answer any of our questions on what to expect once she is here. I have a lot of questions regarding practicle things like clothing, car seat, stroller, sleeping arrangements etc. that I want to know about. This is also where Natalie will go for evaluations by OT, PT, SLP, etc. on a regular basis.
5. I will be going back to the genetics department somewere in my 28th-30th week for another ultrasound to monitor any changes. I am able to have the same peri and tech do the ultrasound as we had yesterday.
6. She emailed me the ultrasound report and the final impression is "Sacral (?S2) neural tube defect, withough meninges and with intracranial changes" Abnormal structures are: Head, brain, spine. Head: lemon shaped ("lemon sign") Brain: Cerebellum abnormal, banana ("banana sign") cerebellum lobes abnormal. Spine: sacral Spina Bifida, over 1 segments. Arnold Chiari Malformation. Everything else is normal.
FB post Saturday, June 23rd:
It's been two days since Aaron and my baby, Natalie, was diagnosed with Spina Bifida and I am not worried... I am surprisingly at peace. I absolutely trust God's plan in Aaron and my life. I know Natalie was made perfect in God's sight. Every piece of me loves my daughter completely for who God made her to be. I also believe God made me perfectly to care for my precious baby with skill. I believe He has been preparing me for Natalie for a long time by giving me special gifts and life experiences specifically to be her mother. Many of your words have been kind and appreciated, but please know I am at peace and faithfully trust God's plan for our lives. Natalie is a blessing in our lives, a perfect Gift from God. I am honored to have been chosen to raise such a special, precious child and I am joy-filled! The joy of the LORD is my strength. Please do not feel like you can't be joyful for us as well. As Aaron and I prepare ourselves for the road ahead we need all the prayer, support and acceptance from friends and family as we can get.