L.A. Dr Visit- 25 Weeks

I have come to the realization that our situation is never going to get easier it's just going to get different. It is a never ending hurdle race, where we get over one hurdle and go on to the next. It is always going to be the feeling of "I can't believe I made it over one more hurdle when I never thought I could and how proud I am" yet it is also always going to be "There are so many more hurdles in this race to the finish line, how will we ever make it when we are already so tired." It isnt so much the physical exhaustion on this race but the mental. Every day there must be a million things going through my mind that never in a million years would I have thought I need to think about, all the decisions, all the options, all the terms, all the outcomes, all the possibilities, all the things worth fighting for, all the things we have no control over, all of the pain, fear, happiness, stress, joy, and confusion. “When all's said and done, all roads lead to the same end. So it's not so much which road you take, as how you take it.”   


So as you can tell yesterdays visit wasn't what I'd call the best ever. I have up until now loved every single nurse, doctor and specialist I've met, so when I met with the perinatoligist yesterday and it right off the bat seemed like he had a different opinion on nearly everything I feel and think I just wanted to scream. I think it was going to happen at some point what with all the hospital visits we have in our future so I had my moment. My "he doesnt know what hes talking about because this is my baby and hes different" moment. It is unreal how quickly I have become so protective over Chase! 


So on to updates!


First he wants me to have a vaginal birth?!?!?!? This was a HUGE shock to me and upset me because we have been told for so long and so many times we would have a c-section as its the safest route so when he completely disregarded this and all my concerns about all of our complications sigh (Im trying to be open minded and have not made my decision at this point, I left without scheduling a date for a c-section or an induction to natural labor) ....I digress.....
Looks like L-4 to S1 lesion level so yay for it not being L3 as the lower the better and the difference between that one level is significant!
His hydro(fluid in the brain) is of course still there but we got some very unexpected news! His third ventricle is not showing any signs of dilation or blockage?!?!? Apparently this is quite unusual as the reason he would have hydro is because of a blockage and the 3rd ventricle is basically a drain so this would show signs of that normally; so 1 of 3 things.....1 this is a positive step toward him not needing a shunt, 2 he is just too small right now and it may become dilated in a few weeks, or 3 it is not functioning at all which isnt as bad as it sounds because it wouldnt affect his cognitive abilities but it would probably mean he will need a shunt.


Basically those were the only two new updates as we wont know the MRI results until we meet his neurosurgeon on Thursday, I expect that to be a very informative day!!! 

6 Months Dr. Visit

Hello Everyone, okay so finally had an ultrasound since San Francisco and a fetal echo.

First the ultrasound, the good news is my little man is a fiesty little thing and wont stop moving around and wiggling his toes. He just doesn't move and turn where we could see him at the right angles all the time so it made for a long visit! The bad news is the moment the screen pops up it couldn't be more evident that the separation has not improved once so ever. He is just in this squiggly blob eek. As much as you prepare yourself when your having complications with your pregnancy it just doesn't get easy or feel okay to look on the monitor and see so clearly somethings wrong. Also, you never ever want to hear the person scanning you say "OH! WOW..." I digress, so at this point it looks very doubtful that the sac will fuse back together and they definitely see "debris" in between the sac and the uterus. I wish there was a clear cut answer for all of this unfortunately there isn't. Theres no way to know or predict how things will go from here, the doctors and mine biggest concern is Chase having plenty of room to grow as big and healthy as he can while in-utero so they will continue to moniter him and I closely and make sure we are both doing well, for right now take comfort in knowing he has plenty of fluid currently even with the complication and is growing right on track. Hes 1lb 7oz right now, it always amazes me how they can tell how much he weighs! Also on the Spina Bifida side of things it was at first hard to hear the hydro (fluid in his brain) went up 2 mm from 12 to 14mm (normal 10mm). However my doctor greatly put me at ease with bringing up the fact we are still on the low scale by far and that with his recent growth spark its reasonable for him to have this increase.

The Echo I am happy to say went great!!! He has himself a perfect healthy little heart and it felt like the biggest relief to finally hear for once in the past months that something was perfect and not to worry!

So taking the good with the bad I came out in a fairly positive mood and determined to keep myself relaxed and stress free and have a nice long pregnancy with no more complications. Well be getting an MRI soon and meeting with the team in Los Angeles that will be delivering and performing Chases closure surgery at Childrens Hospital LA, I was so nervous about going there and scared they wouldnt share my beliefs on how I feel Chases Spina bifida should be handled but after reading more about their beliefs on their website about things we'll be facing it looks like we are on the same page and I am excited to meet them =)

Till next time =)

Playing House & Living Life

When your a little girl, you play house with these perfect little baby dolls and build your dreams on these experiences so when your hear that you real life baby isnt going to be this perfect little replica at first your heart breaks naturally but as time goes on I feel more and more like "yes, my baby isnt going to be like those perfect babies wrapped in plastic and can do everything just right at the touch of a button but that hes going to be so much more special than that." That he will always be more than the "Standard", hes always going to be his own unique person with struggles and triumphs that I and Bryan will be lucky to witness. The one thing that will remain the same though is that as his mom I will always be his cheerleader and move past the bad days and look forward to the good ones! I love you Chase Michael Shelton and I just can not wait to meet my very special baby <3

23 Week Visit

Pretty routine I suppose, no ultra sound today but we listened to his heartbeat, loud and strong as ever and these days I just am thankful for that beyond the stars! On the down side Im never stepping on another scale again in my life ever! They're going to have to drag me on one at the next appointment. As though it weren't bad enough to see the big weight spike after I've been doing so good, then I have to hear "Everyone has their own way of coping with things" among other comments.... That made me feel real lousy and like I'm eating away sorrows and stress, I don't want anyone thinking anything like that, honestly my eating habits haven't changed; I think I've just been super lucky with the weight up until recently especially since I can't work where I'm used to walking all day long always on my feet but I started feeling super guilty that the one thing I can do for Chase right now is eat healthy and stay on track weight wise and I'm failing in a matter of 3 weeks =/ so no greasy tacos for me tonight for dinner, no matter how delicious they are! I have an appointment next Friday with one of my parinatologists so every one cross your fingers that the stars align and the amniotic sac starts to fuse back together and we get no more bad news from here on out!

Poem I was read this week, couldn't seem more perfect!

                                                                 Welcome to Holland


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

S.F. Evaluation

So as you know we headed to San Francisco Monday for evaluations. We met with Rachel who is basically the do it all awesome nurse/coordinator for fetal surgery early Tuesday morning and went over the welcome speech. With that came a very real smack of possible complications and possible positive outcomes. It is not easy stuff. You can have open heart surgery with a 30 minute discussion, but fetal surgery you discuss and evaluate for 3 days just to give an idea of how heavy it can all be. Rachel was super impressed with me though and said through our phone conversations she would have never guessed a bubbly 20 year old would walk in and that she thought I was a super star at research and mature beyond my years. It never gets old hearing that I'm doing a good job at tackling all of this, at the end of the day I just want to know that I'm doing everything I can and that one day my knowledge and efforts will pay off and that Chase will know how much I love him from the very beginning.

So we headed upstairs to our ultrasound. We met with the lab tech whom would be performing the first half of our ultrasound. He explained to us that he is not the doctor and cannot/ will not answer questions but that we could be assured the doctor would answer any and all questions if we had any. However he was super nice and indulged us very much when we were trying to figure out if any measurements had changed. One of the hardest things is that when Chase comes on the screen, I go to another world and forget Chases spina bifida. I look at him and only him kicking back at the pressure of the scanner, and hiding his eyes behind his arm. He is just so perfect in that moment to me I feel so calm and unprepared. So it always shakes me ten times harder when reality comes crashing in and something else is being thrown at us.

At this point he looked in great shape and the lab tech left, I truly thought we just have to get through this and were in, we were so prepared for this surgery I only thought about how things were going to be with this surgery happening. When the doctor walked in his voice was so low and quiet and calming I immediately felt calm. He asked if we had questions and we said no and then he said "well..." Chases lesion was higher than what we originally thought. We were initially told and thought he was at L-5,S-1 which is low and of course the lower the better. They believe his lesion is at L4 and werent sure if closer to L3 or L5, it all doesnt sound like a lot but it can be the difference between him walking, walking with support braces or being in a wheel chair. More doctors were going to be meeting later in the afternoon and theyre going to let me know what they all thought but we did hear before we left it looked closer to L-4,L-5 but they have to give us the worst possible scenario just in case. So as much as it sucked to hear his lesion was higher....

This wasn't the bad news.

The bad news is that as a result of the amnio, I am having amnion chorion seperation. Basically the amniotic sac that baby Chase sits in fuses early in the pregnancy with the choronic membrane, most of you who have have children will have never even seen this as its not something you really see on screen when its fused. It is common in that 1 in 800 statistic have affects for a small area to become separated after an amnio and is a risk you sign for when getting the amnio. It isnt quite as common for the entire thing to separate all the way around. The ultrasound showed that fluid is leaking out and that of course because of this he said it could affect their decision to operate and that they would tell us downstairs what they decided. 

It was easy to be angry on the way back down to the Fetal treatment center. A million thoughts, why wasnt this seen earlier when my amnio was a month ago, why did this happen in the first place, did I put my baby in harm by trying to help him. Walking into the room I was completely neutral I was straight faced and forced every thought out of my mind, I needed to have clear thoughts only to take in every word. We met with the Parinatoligist. A nurse and a student came in to observe. He drew out exactly what was going on and any potential risks from the separation. Basically premature labor so I am going to have to take it extremely easy and be watched very carefully to make sure I and the baby are both safe and hope that a miracle happens and it all fuses back together or at least partially!

"Unfortunately as I'm sure you can see as a result, we could not offer this surgery to you." There was more, but you couldnt pay me all the money in the world to remember the next minute. I remember feeling far away, truly separated from the situation. I could see the student give me a tissue to wipe just two small tears that came down my face. I could see me nodding, Bryan glossy eyed and red, my mother looked ghost white. 

I couldnt be mad, not at them they had done and continued to do nothing but help me that day. I couldnt be sad, not really. Technically this wasn't Chase's only option. Of course it was the option I wanted but who knows maybe it was a sign. I kept thinking "I thought you were watching him, me, us" But maybe she is watching maybe this was a sign that the surgery could've been the wrong option for us. I was so determined to have the surgery, to indulge the chance to help him develop for a few weeks with his defect repaired. The next 20-30 min I took in and absorbed as much information as I could. And we all continued to that day talking with rachel again and the head of their spina bifida clinic to learn about whats next for us. We asked questions on being prepared for when hes here and having his lesion closed after birth. I wish you all know that there are so so many amazing women who are raising a child with spina bifida and I have been so lucky to speak with them, I am strong for a lot of reasons and they are definitely one of them! The student later came up to me and told me she just couldnt believe my manner in the room and they had told her I was positive and was impressed. She said she felt like I was an inspiration. Jesus, I think I wanted to cry hearing that more than in the room. And again when the neurosurgeon who we were supposed to see later that day but he had an emergency surgery we found out first thing in the morning made time to come down and apologize and say how disappointed he was after hearing such positive things about us that they couldnt operate like I wanted. They are wonderful people at UCSF and if anyone should ever read this wondering if they should go up for an evaluation my answer will always be absolutely! 

So its a long post and trust me throw in a 10 hr drive before and after this day and I am just drained.

Thank you all for reading and continued support, and thank you sooo much to my Mom, Dad and Bryan <3