21 Week Dr Visit...

Well kinda... We actually just met with our parinatalogists ultra sound tech, the wonderful Pam.

Sooooo I was completely paranoid about getting an ultrasound before we head off to San Francisco next week and even had a tiny fit last night crying myself to sleep while Bryan tried to calm me down. Sometimes I feel like few but the moms going through this can truly understand the complete awfulness of the unknowns of Spina bifida. They say the worst part is the pregnancy because simply you just dont know how your little one is doing or how he/she is going to turn out when they step out into this big world or even in just a week at the next check up. So naturally I have gone into "I need to see him and hows he doing every chance possible" and "can't I just buy an ultrasound machine and put it next to my bed so I can scan as I'd like" mode. Finding out your baby has Spina bifida is probably just about the worst thing ever for a control freak like me on the nerves ;)

I am happy to say that todays visit was a great one!

I read and am told all the time that anything can change and to expect it to in 2 weeks time!...Well after 4 weeks Chase is such a trooper, he couldnt make me prouder! His ventricles and hydrocephalus are the same as last time and no signs of increasing there which means for those of you who dont know that the spinal fluid build up in his brain has not increased since our last visit at 12mm and normal is 10mm&under so pretty low to begin with, which is good news. We saw a great shot of his opening and it looked L-5,S-1 like we were hoping for as opposed to the L-3 we were told at the last appointment, the lower the better and S-1 is the lowest possible to be eligible for fetal surgery otherwise his case would be considered too mild so already feeling fortunate there in that its low but still we can qualify for surgery to hopefully even better his outcomes. He was kicking his legs up like a champ and at the end of those precious little legs were two adorable little feet that show no signs of club feet (very common with spina bifida babies and even though its correctable with braces we are still happy to hear he most likely isnt going to have this issue)!
After finding out that some one in Bryans family has had minor clubfeet at birth I was a little worried and made sure to get a good look at his feet this time.

So I couldn't have asked for more in this visit! Of course as mom I only want to see positives but I have to say it's hard to dwell on the negatives for me because honestly theres just so much to be thankful for at this time. Its only going to get harder so the more positive I am in the beginning the better off I figure I'll be =)

So with that we will be headed up to San Francisco for 3 day detailed evaluations on Monday. If all goes well the following Tuesday we will be having fetal surgery at 9:30 AM. For those of you who are curious about the surgery we are trying to participate in I am posting a video on it =)

Thank You again for every ones support! <3

Dear Future Reader

To anyone who may ever find my blog after finding out at a routine or even not so routine check up that your little one might have spina bifida. I can only hope you find as early as I did that the best thing you, your family and for your baby is to still be excited. When I think about the day before we found out, Bryan was in the office laughing at me for taking all these measurements of Chases room. He said it was adorable how excited I was to decorate his room and how much I was going to spoil him. The next day was so so different It physically hurt me to look at his room. I closed the door and wouldnt buy him anything wouldnt look at anything to buy him. I didn't know it then but I was torturing myself. I was sucking all the excitement Bryan and I had for this baby out and it is so true that being pregnant with a baby with spina bifida is scary, but I firmly believe its the scariest part. When you don't know what to think you think the worst. Nothing makes me happier then to bring out all the things we've bought for our little boy and just talk about who we think he'll look more like. I would strongly advise not hide in your room keeping all of your emotions in. Talk to your friends and family. I found that telling each new person got easier and easier. Go to work and carry on as usual. I went back to work the next day after we found out it was hard and yes I hid in the bathroom with tears or behind racks wiping my tears but by the end of the day I found I could talk about it without breaking down, It got easier and easier, and honestly as common as spina bifida is most people know nothing about it and I think thats a big part of being scared while pregnant. "What will people think? "What will people say?" Well I find that me being informative changes how people react, it all goes back to when you dont know what to think, you think the worst! I hope you find peace, strength and happiness in your pregnancy and I know I'm going to be ok and you will too and our babies too of course ; )

Worry Wart With No Ice Cream

I am absolutely itching sitting here typing this. I have been so obsessive the past few days over seeing my baby boy on an ultrasound again. I don't know why but it is eating at me. I've been trying to reach the perinatoligist we see nurse/case manager but she and I seem to keep playing phone tag. Her last voicemail on Friday was not one I wanted to hear as I thought I would just explain to her that we will already be in S.F for evaluations the day of the appointment they gave us and ask for an earlier one......instead they gave me one for the day after were scheduled for surgery (if surgery happens)....they actually said it isnt necessary to see him again before we go up since he was so good at the last appointment which was our amnio. The thing is they tried not to stimulate the baby for the test and I refused to look at the screen so I wouldn't see the needle. I kept asking them to check and make sure his feet were moving but later they said they weren't really thinking about it. I'm not mad at them, I know its a little early to be worried about that and the appointment wasn't to check for anything like that but I am going crazy over here.

It hit me that when we go to S.F it will have been a month since I've seen my little man. Last time everything sounded so sugar-coated since I have to admit Chase looked pretty darn good all things considered but I have this impending sense that were going to be informed that everything has gotten so much worse in 4 weeks time and not have been prepared. I just want confirmation that Chase is ok and that these things that I hardly ever feel are kicks and not just me imagining them being kicks. The last time mommy saw you Chase, it was all so much to bear. It was an emotional time and I didn't savor it, I know I'm being a baby and blame the hormones but I guess as well as I'm taking everything thats going on I still just cannot grasp how I feel perfectly fine and healthy and my little baby inside of me does not. That there is nothing that alarms me to changes that could be happening in him as I type or even clues that could signify how well our baby is. This is too much to handle with no ice cream in my freezer.

Some one told me this quote one day when I was being a worry wart similar to now so I'm sorry I dont know where it came from to give credit to =)

“You can't change the past, but you can ruin the present by worrying about the future”

Trials & Blessings

Its been 2 weeks today since we found out our little man has spina bifida. It sure feels like we are being tested. So many outside stressors have been being thrown at us both individually and together recently but through it all we still go to bed with a kiss and "I love you no matter what." I was reading another blog today & this woman's marriage completely fell apart within weeks after finding out their little girl was going to have a disability (not spina bifida) I couldn't believe it, I read her blog so much because shes so positive but I guess it makes sense why she never mentions a husband in the picture. I really stepped back and started thinking about in some weird way just how lucky I am to be going through so much with Bryan. Not every man or woman could go through all of it and remain strong and there for the other one. Without these trials, I may have never really known just how strong Bryan and I are not just independently but together. I feel like he is my rock completely in this and I truly dont know how I would get out of bed each day and find a positive if it weren't for him. Chase will be our blessing and I hope him having such loving parents will be his blessing from us. We got the amnio results we were waiting for yesterday. As much of a baby I was about it I guess it wasn't awful and I could not have been happier to hear good new to start my day. Looks like surgery will be May 8th, which feel so far away but then again these past two weeks has felt like 2 days!

“What seems to us as bitter trials are often blessings in disguise”
Oscar Wilde

Being Strong

The day that someone discovered Chase's Spina Bifida was not the day we discovered that our very first baby boy whom we had become so attached to sitting in my belly would be affected by something that we had no control to change or fix for him. It does not take long to know as a parent you would do anything for your child even our unborn one to take away any hurt or pain they may ever feel. It was the ultrasound to verify our little bundle was indeed a boy just like his daddy wanted we had almost missed the ultrasound appointment by a time mix up but thankfully we had two appointments that day so they made room for us to go down to the lab. I remember Bryan couldn't come in for a long time while she was taking measurements and it never struck me as odd or weird I just waited peeking up at my little boy on the screen completely happy. We were also scheduled to have blood drawn afterwards as a followup to the state screening test we had signed up for. I can distinctly remember after being at the doctors for hours Bryan and I joking how if they didn't find anything at the first one, they weren't going to find anything now in our healthy boy and that we should leave (I hate needles and would make tons of excuse jokes to get out of them.) Boy was I wrong, I will never forget that joke. We left after the blood draw perfectly happy.

I missed the call by five minutes and they were already gone for the day. I truly knew something was not right maybe it was that my doctors office never called me personally. Bryan said maybe it was an appointment change, I was not convinced and hardly slept. I waited in bed aimlessly til 9AM when I could call back, however when I went to my phone I had 5 missed calls and 3 voice mails already from them. I immediately went into a sweat they don't call that many times for an appointment change before they're open. The first messages were all bland but then there it was a different person then the first messages telling me our baby may have a "neural tube defect" and they needed to see us right away. What in the hell was that I thought! Bryan was googling already while I was calling the office back. He told me spina bifida? I said no no they said neural like brain? (what did I know) The woman told us we had two appointments to confirm lined up already at two different hospitals, not to come alone so someone could drive if we became too emotional I couldn't hear what she was saying after that this was serious. We were both crying by then and we didn't even know what was wrong.

Because of the surprise of the situation even for them they didn't really have room to see us and fit us in where they could and I think I will always be angry at them for it but they sent us to a genetic counselor first who expected us to grieve and cry and ask him questions when we didn't even know what was wrong and technically, neither did they! They kept saying the needed to confirm on another ultrasound to be sure. Yet here we were in a counselling office being told our options for our baby when we couldn't fully grasp if they were even right. Bryan, my mom and I were all pretty calm at this point as were all very logical people. We knew he expected us to break down, instead we studied for an hr before the ultrasound we googled everything we could about spina bifida and the new surgery option the counselor mentioned. Ill never know why but I felt this fetal surgery was my option from the get-go.

Chase has Spina Bifida and the pain Bryan and I felt that night and the next is indescribable. I doubt either of us has ever been so vulnerable to another person with open emotion. We have both seen the others eyes in the worst moment of their life to date. I couldn't look at Chases room, I think we were both terrified to be happy like before but we were wrong, we were very wrong to be unhappy for a second and we know now that this changes nothing, that Chase is still going to be the best thing that ever happened to us. It was Bryan who was strong first. It was him who first said he loves him anyways and hes still excited to meet his son. He regained composure held me when I needed it, let me cry if I needed but Bryan did not cry with me anymore. Im sure he was still sad and maybe still is to some degree but he is completely amazingly inspiring to me to be so strong, I couldn't do it the day after but I had a dream the second night that my passed grandmother was watching over Chase and us. I woke up strong through her and Bryan and now my life is different. Now my life revolves around our baby in a new way. After hours of research we realized we are actually very fortunate, we found out very early, Chases lesion is very low(L5,S1...L4,L5 at worst) and not very big from what can be seen right now, he has minimal fluid in his brain very close to the normal range and the chiari through ultrasound is at a very early stage and doesn't look too bad. All the minimums to qualify us for fetal surgery. The specialist we see says Chase is one of the best cases he's seen and thinks the surgery is going to be amazing for him but we wont really know until he's born. We are going through with the option to do fetal Surgery in May at UCSF. People ask me if I'm scared but I'm not. I'm not scared to give Chase any opportunity I can and while I cant cure this for him, I can be strong for him.

& so Chase's journey begins....