This is our story....The story of our journey as a family of four

Tuesday, February 2, 2010

Our second trip up to Childrens

It was January 14th, and we were off to our second appt in Buffalo.  We were going to be meeting with Dr.Mann again for another sonogram and consult, and Dr. Li, the neurosurgeon that would preforming Easton's closure procedure.  We were ready....we had researched as much as we felt we possibly could, we were able to find this amazing network of people on the net that have gone through or were going through exactly what we were.  (Spina Bifida Kids on baby center....can not even begin to say what a blessing this sight has been)  We even found a couple in Lancaster that have a 7 mo old with SB, and we were going to go over and meet them in between appointments. We left Jamestown at 6:30am feeling very good, very hopeful...

We met with Dr. Li at 8:45...there we were with our notebook, and no joke 4 pages of questions for him.  He was very informative and basically just gave us a run down of SB and some of the what if's....I'm not gonna lie, there were moments when I sat there and thought please tell me something other than what we've already read...and he finally did, but there were moments where we could've recited what he was saying before he even said it.  He mentioned the fact that Easton was showing signs of Arnold Chiari II malformation....I insisted that he didn't (Dr. Mann never mentioned this when she was telling us)..... at that moment my heart sank, and I said again, no I don't think he has that....I don't know why but reading about ACII online scared me so much that I couldn't breathe for a minute.  Then he pulled out the report to review it because I was so sure, and he read it to us......To be honest at this moment I wanted to cry, I didn't want to hear about one more thing that baby E was going to have to deal with....wasn't the Spina Bifida enough.  Then after he explained it a little more, and made it a little less scary than what you read on the web it made things a little better.  ACII is something that almost goes hand in hand with Spina Bifida, most people do have it, and most of the time it is asymptotic.  Sigh...ok...what can we do, nothing....nothing but pray that his will be asymptomatic.  Dr. Li went into the closure procedure and what would happen, how long it would take, etc....then he started to talk about the shunt procedure....because of the SB and the ACII Easton's CSF (cerebral spinal fluid) does not drain from the brain as it should, in which case will leave him in need of a shunt to drain the fluid away from the brain.  As of right now his ventricles are dialated....and only time will tell if he will need the shunt.  The thought of this at the first visit scared the heck out of me, but after reading/talking with other families I quickly began to realize that the Hydrocephalus was a catch 22.....either you worried that he would need a shunt, or if he gets a shunt, a shunt malfunction will be your worry..... double sigh.  At this point it really doesn't matter either way- Easton will get what ever it is he needs, my only hope is that if he does need a shunt, they know right away so that way he can have that done at the same time as his closure procedure....We just hate the thought of him having 2 major surgeries so early in life...but what will be will be.  As Dr. Li was talking about both procedures and talking about an incision here, and and incision there I began to lose it a little.  I just can't imagine someone so small and brand new to this world having to go through more in his first days than we have in our whole lives.....

We left the appointment feeling comfortable with what we had learned, and very comfortable with Dr. Li..... we felt that Easton would be in good hands.  As Cody and I walked back to the car we laughed at something the Dr had said during our apt..... we had asked about Easton's cognitive development, and he said that just like with the general public there is a range as far as the IQ goes, but he did go on to say "I know there's a neurosurgeon who has Spina Bifida" ..... then he quickly said, " not saying you have to be a genius to be a neurosrugeon" trying to be modest.... that made us laugh a, of course you do, and further more, you are going to be opperating on our brand new little baby boy....please Dr. Li, PLEASE tell us over and over again how smart you are! It was nice to leave the Dr's laughing about something. 

We were on our way to meet up with the family in Lancaster, Elizabeth and Emily.  What a true joy this was for Cody and brought such a sense of peace over us.  When we got there Emily was sleeping so it gave us a chance to sit and chat with Liz and just ask her questions.....She was great, she shared with us everything that we could've asked and more!  We saw pictures of Emily's lesion, pics of her in NICU, and to be honest all I saw was a beautiful little baby girl.....never mind all of the other stuff, the cords, the monitors...they weren't overwhelming at all, what was overwhelming was that beautiful baby.  Our visit went so well, and we got to play with Em when she woke up, and she was just as happy as she was adorable... just a sweet, adorable, happy, healthy baby, that's how I would describe that lil was so nice of them to open up their home, as well as their lives, and for that we will always be grateful so thank you Keicher Family.

Back to Childrens we went...there we were in the perinatal office sitting and waiting.  I had to go up to do the usual business of peeing in a cup(sorry to be gross), and I was waiting outside the bathroom and I overheard the sonographer say to an intern "the Spina Bifida baby is next"....and then she looked up and it looked like she saw a ghost..."Mary" she said, and I just smiled and thought to myself 'ya hear that baby E, we are next'.  I'm not gonna lie, the more I thought about it I thought  "Spina Bifida Baby?!", "you mean baby Easton"- but just let it's not like she knew his name, and I do understand, I know it's not something they see everyday so the intern should come in and learn.  I did make it a point during the sonogram to tell them both that his name would be Easton Kent, and they both liked it very much.  So there we were again, staring at the tv, and our beautiful baby boy squirming about all over the place....he still had good leg movement, but we do understand that is no guarantee, and no signs of club feet yet...but again that could all change.  And if it does, so be is all manageable.  The tech was so good about showing us the ACII, and what it would look like if he didn't have it.  She also mentioned that she thought that the lesion was lower than what they thought...originally we were told L3, but she thought more L4-L5, which was exciting news....but again, nothing is for sure until he gets here, so I'm sticking with L3 until we know for sure! Everyone up there is so nice, and so informative and patient with showing or teaching us all that they can.  She had the perfect chance to get a 3D pic of his face, and when she did Cody and I both goodness, he looks just like his sissy!

After the sonogram, we met with Dr. Mann again and just talked with her about the very few questions we had left....we had been so blessed throughout the day to get as much information as we did.  We also talked with her about our worries of going into labor early, and what we would do.  I mean after all Caidence was 5 weeks early!  That's when we all decided that since we had good dates that matched up with the sonograms that it would be a good idea to do an amnio to check his lung development at the end of 36 weeks (mid-marchish...we will get the date at our next appt on Feb 10th), and then we could schedule the C-section the day after if everything looked good! E is going to be here sooner than we thought, but what a sigh of relief we both felt.  Now we just need him to hang on 'til then!

Cody and I left Buffalo on the 14th feeling at peace with everything that was going on......we left more knowledgeable, more confident that we really could handle everything that is to come, and even more excited about our little boys delivery.....

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