As Nae and I sat down that Wednesday morning eatting our Honey Nut Cheerios watching "Shturat" (Stuart Little) and we heard George say: "It's today, it's today!" , "it's always today" said mama Little...."no but today is the day I get my little my brother", neither of us thought it was the day she was going to get her little brother. It was business as usual at the Rapp house, we were just doing our normal morning routine until Dada got home so I could go and get my first non-stress test to make sure I wasn't contracting. Cody got home so I told the two of them that I was just going to run into town, have my test done, stop for a few errands then I'd be home, smooched them both and away I went.
I didn't schedule my test, so I did end up waiting for a bit in out-patient until they could get me up to L&D and I remember thinking, man those cheerios didn't last too long. Eh, I brushed of f the "hunger pains" and promised to treat myself to a little Tim Horton's after I was done. I finally got up there around noonish, got all strapped in and when the nurse came back in to check on me she told me I was contracting....impossible I thought.....I don't feel anything but a bit hungry. Well, about 10 minutes later I started to feel them, nothing too bad but Heck in the world...this was not our plan, what is going on in there! They called the Dr's to see what they wanted them to do, and they started an IV and gave me something to try to stop labor. I remember asking if should I call my hubby..."no no" they said- lets just see what happens. Needless to say, in the middle of Days when things weren't getting any better I made the phone call to Code.
Cody was just as shocked as I was....I told him that they did a test to see the likelihood of me going into labor in the next 2 weeks, and that it came back positive....and his response was "so we have 2 weeks?!"....um well, not really. He was able to call his mama to come watch Nae, and he backed a few bags because we had a feeling we were well on our way to Buffalo for the night. By the time he got there, I was on my second dose and it still wasn't working. At this point we were kind of getting antsy since we were in Jamestown and knew we needed to be in Buffalo just in case. We ended up calling Dr. Mann to let her know what was going on, and to probably expect us at some point....and she pretty much said that she wanted us up there right away. So that was it...it was time to get transported.
By the time the ambulance team got there, and all of the paperwork was done it was about 5pm.....and at this point it was a blizzard. I had no idea the weather was so bad until they said they weren't flying and that I'd have to go by "bus". Holy Moley...is this really happening I thought. I have to say the ride up wasn't that bad- the L&D nurse that went with us was really nice, and so were the 2 EMT's...the one was expecting and we all chatted about how we loved to watch Discovery Health....now mind you during all of this I was still having contractions...not bad though..... looking back they were frequent but really not bad. The baby's heartrate was perfect, and I just kept telling myself that they would be able to stop this. After 4 doses of the medicine and really no relief I should've realized, but the nurse said that there were other options once we got there. The overall trip took just over 2 hours, and the poor driver was petrified by the time we got there- but what an amazing job driving she did. I waited until we pulled in to ask if they had 4wd, and I'm glad I waited until we got there because indeed ambulances do not have 4WD (just a little FYI)
It's now just a little after 7p and the nurses at Childrens are kind of lax...although so was I. Just asking questions, filling out paperwork. My mom was texting me that she was on her way...I assured her that they would be able to stop it, and that there was no way that I would have Easton that night, and told her to take her time and drive slow. Then I started to feel the contractions coming on a little more, a little stronger, but really nothing to really complain about. No one asked how far apart they were, and looking back they were closer than I thought they were. The nurse asked if i could give her a urine sample, and i said of course so I walked on down the hallway to the bathroom...I washed my faced and was really just taking my sweet old time, thinking to myself well this really isn't really that bad at all, they would stop labor, I could get a good night sleep and we could have Easton tomorrow, after the second steroid shot for his lungs....perfect I thought. Then when I got back was when things started to get a little crazy
They finally examined me, and I just remember the nurses jaw dropped....."you're 7-8cm" and I just looked at Cody.....What the heck....the contractions don't even hurt yet, they are there but not bad enough to be that far in labor!? I was just thinking back to Caidence, and how I was in pretty bad pain and 3-4cm's.... There must be a mistake I thought....but Oh no... no mistake, Baby Easton was well on his way...he decided it was his time. She said you are about to have about 20 people in here because we need to move. I have no idea how, but the first thing that popped into my head was the cord blood kit that was out in the car. (of all times to actually have a brain, I'm glad I did then) The nurse looked and Cody and told him to run, and so he did. By the time he got back I was capped and being wheeled out to the OR.
What seemed to take the longest was getting the spinal, I remember just sitting there, waiting for him to do it...I was shaking like a leaf...and the nurse just sat there and held my hand. I could not believe that he was really on his way. I was still dumbfounded how I had no idea that I could possibly be that far along (looking back Caidence was posterior which meant back labor, and this lil guy was frank breech which is still not ideal, but obviously a much less painful position for the mama). They laid me down and it was only a matter of time. When Cody came in he just held my one hand....and tried to stop me from trembling but I couldn't ( I was told it was very normal) but then we heard it.... the tiniest little whimper I have every heard. Just one whimper was all we got at first until after the Dr's and Nurses helped him along a little. I'm sure it was only a couple minutes (if that) that they had to work on him, but it felt like an eternity....and then we heard it again....they were the smallest little most perfect cries that I have ever heard....they were beautiful. They finished getting him all cleaned up and then they brought him over. There he was, our little miracle. He was just amazing, just as we imagined.
The bells rang through Childrens hospital for Easton Kent Rapp on Wednesday, February 17th, 2010 at 9:16p, he was 4lbs 9oz, 17 3/4" long, and his gestational age was 33w5d. He was here....he was really, really here.
Recovery was miserable....k that's a bit of an exaggeration but really all I wanted to do was go and see our baby and finally it was time for us to go and really see our babes...and there he was, just as I pictured him... on his lil tummy with his lil rump in the air-he was beautiful. Our hearts melted for our little son.... There was no holding him, or embracing him, but we got to touch his tiny body and just let him knowjust how much we loved him. Our first visit with him was short, but certainly sweet. I wanted to stay with him forever but they still had a little more work to do to get him settled in his new "temporary" home away from home.So upstairs we went.
Looking back I don't think that the day could have been any more perfect. No, it wasn't ideal, it certainly wasn't our plan, and at times it was a little scary, but really I know that the day went exactly as it was supposed to....now it wasn't the plan that the Dr's came up with, it wasn't the plan that we came up with... it was the plan that Easton came up with. Easton knew what was going to best for him... he knew he was strong enough to be brought into this world early, he knew he was doing his mom-mom a favor by not letting her stress out about trying to plan every little detail. I do think it's really something though because I didn't have to go in for my non-stress test at noon like I did. I think it was a mixture of everything.....luck, fate,baby E taking things into his own hands, and my body knowing that it would be okay for Easton.....I don't think it was just a coincidence that I chose Wednesday to have my test done.... Baby E and I were in the right place at the right time, and everything worked out beautifully. I couldn't say enough about everyone who helped us along our way that amazing day. We were exactly where we needed to be, when we needed to be there, every step of the way. We look back and we count our blessings.....everything went perfectly, just as it was "planned". Cody and I have our son, and Caidence has her little brother....and he is as healthy and happy as we could have hoped for. <3
more to come very soon!
Sunday, February 28, 2010
Saturday, February 13, 2010
Less than 1 month...
Well, at our last appt we got some good and exciting news... news that we knew we were going to get, but that still didn't take away from the excitement.....we got the date of our amnio. Sweet baby E could very well enter this world on March 11. We will head up to Buffalo for the amnio at 9:30, wait an hour for the results to come back and if all is well they will do the C-Section that very same afternoon. HOORAY! We are really hoping that the 11th is the big day, and if he's anything like his sis, he will be ready. Heck there are some nights when I think that he is ready now, but I just keep telling him he needs to be patient (even though secretly I am wishing it was time too). I can honestly say though, we can not wait to meet our little man!
The Dr's appt went well....it almost felt somewhat routine. We weren't on pins and needles, we weren't full of nerves and anxiety and questions...we were just there, there to check up on our babes. Not saying that we know all that we need to know, and that we still don't worry, because of course we do, but we are doing just fine with the news that we've been given, and we (our lil family of 4) will be just fine with whatever comes our way.
Baby E was a little shy, and of course tried his best to hide his back from the sonographer, but they got a decent look at everything that they needed to. They are still saying his leision is in the lower lumbar region, so that has stayed pretty consistent. His ventricles are dialated, but they are saying that he is borderline right now for a shunt, and again, this is all expected to change once he's born. The chances of him needing a shunt at some point are very good....and that's okay-we know that he will get what he needs. He is about 4lbs 9oz, so his growth is right on track and he is doing great. Even though things are a little more crowded in there, he still had good leg movement so that is always encouraging, but again this could change after his closure. On a funny note, I said he was being shy, but Dr. Lele made the comment about how he was not being shy about showing off his manhood..... we almost died. She is a tiny, little woman who is very soft spoken and that comment kind of floored me. Even funnier though, I missed it, I didn't even see his manhood...Cody was like how in the world did you miss it!?, but I was busy looking at other things must be!
We toured the NICU and met with one of the head Dr's......it was a pleasant suprise but still overwhelming. I don't know what picture I had painted in my head, but when we walked in I felt somewhat of a sense of relief, I think partly because I thought I would bawl as soon as I got in there....but to my surprise, I didn't feel the need to cry. They call myelomeningocele babies M&M babies and they really talked about how healthy our babies are compared to most in the NICU. We have actually heard this from a few people now, and although it is reassuring news for all of us, it's still heart breaking for all of the other lil babes and their families, and I know once we are in there, it will be even more so.
All we have been hoping, praying, wishing for baby E is for him to be the healthiest, happiest little baby that he can be. People will say you never know, God works miracles...and to us, he already has....Easton is already a miracle. This is a part of him....it's who he is, and we don't want to change that. Now that doesn't mean that we don't want something to come along at some point to help him along his way, because of course we do. But at the same time we want him to accept his SB just like he would accept freckles if he has them...We want him to know and to be OK with the fact that he may be different, but not less.....(thanks aunt Joy for that quote) Besides, who wants to be and do everything like everyone else anyways. With that said, if everyone could just keep praying, hoping, wishing for him to be the healthiest and happiest that he can be we would really appreciate it....we love the love that you all feel for this little guy. It's amazing how one little life can impact so many lives and no one has even met this little man yet.
Our next appt is scheduled for the 24th and after the hospital we are hoping to go to the Ronald McDonald house to take Caidence through it, just so it's somewhat familiar....and from there we will go play at the Rondeau's so she can get familiar with their house, because we will be spending some time there as well. The next few weeks will be all prep for Easton.... Caidence has started to say his name and that is quite adorable. She actually calls him "Steeston" or "deeston". She has managed to swipe a couple of his binkis, and a couple of his hats for her babies, but I know Easton won't mind sharing with his sissy. Tomorrow we are going to spend a quiet Valentines day at home....we have bump pics in the morning, but then we are going to dig out all of the baby stuff and get it set up, and make chocolate covered strawberries as a family...It's going to be a family day at home, and we are looking forward to it. I'm sure Caidence will be quite the helper tomorrow!
The Dr's appt went well....it almost felt somewhat routine. We weren't on pins and needles, we weren't full of nerves and anxiety and questions...we were just there, there to check up on our babes. Not saying that we know all that we need to know, and that we still don't worry, because of course we do, but we are doing just fine with the news that we've been given, and we (our lil family of 4) will be just fine with whatever comes our way.
Baby E was a little shy, and of course tried his best to hide his back from the sonographer, but they got a decent look at everything that they needed to. They are still saying his leision is in the lower lumbar region, so that has stayed pretty consistent. His ventricles are dialated, but they are saying that he is borderline right now for a shunt, and again, this is all expected to change once he's born. The chances of him needing a shunt at some point are very good....and that's okay-we know that he will get what he needs. He is about 4lbs 9oz, so his growth is right on track and he is doing great. Even though things are a little more crowded in there, he still had good leg movement so that is always encouraging, but again this could change after his closure. On a funny note, I said he was being shy, but Dr. Lele made the comment about how he was not being shy about showing off his manhood..... we almost died. She is a tiny, little woman who is very soft spoken and that comment kind of floored me. Even funnier though, I missed it, I didn't even see his manhood...Cody was like how in the world did you miss it!?, but I was busy looking at other things must be!
We toured the NICU and met with one of the head Dr's......it was a pleasant suprise but still overwhelming. I don't know what picture I had painted in my head, but when we walked in I felt somewhat of a sense of relief, I think partly because I thought I would bawl as soon as I got in there....but to my surprise, I didn't feel the need to cry. They call myelomeningocele babies M&M babies and they really talked about how healthy our babies are compared to most in the NICU. We have actually heard this from a few people now, and although it is reassuring news for all of us, it's still heart breaking for all of the other lil babes and their families, and I know once we are in there, it will be even more so.
All we have been hoping, praying, wishing for baby E is for him to be the healthiest, happiest little baby that he can be. People will say you never know, God works miracles...and to us, he already has....Easton is already a miracle. This is a part of him....it's who he is, and we don't want to change that. Now that doesn't mean that we don't want something to come along at some point to help him along his way, because of course we do. But at the same time we want him to accept his SB just like he would accept freckles if he has them...We want him to know and to be OK with the fact that he may be different, but not less.....(thanks aunt Joy for that quote) Besides, who wants to be and do everything like everyone else anyways. With that said, if everyone could just keep praying, hoping, wishing for him to be the healthiest and happiest that he can be we would really appreciate it....we love the love that you all feel for this little guy. It's amazing how one little life can impact so many lives and no one has even met this little man yet.
Our next appt is scheduled for the 24th and after the hospital we are hoping to go to the Ronald McDonald house to take Caidence through it, just so it's somewhat familiar....and from there we will go play at the Rondeau's so she can get familiar with their house, because we will be spending some time there as well. The next few weeks will be all prep for Easton.... Caidence has started to say his name and that is quite adorable. She actually calls him "Steeston" or "deeston". She has managed to swipe a couple of his binkis, and a couple of his hats for her babies, but I know Easton won't mind sharing with his sissy. Tomorrow we are going to spend a quiet Valentines day at home....we have bump pics in the morning, but then we are going to dig out all of the baby stuff and get it set up, and make chocolate covered strawberries as a family...It's going to be a family day at home, and we are looking forward to it. I'm sure Caidence will be quite the helper tomorrow!
Monday, February 8, 2010
In Caidence News...
well, where or where should I start..... I wanted to give you all little snippets into what's new with Caidence-
Nae has just started gymnastics...or "nastics", really its the stay and play at the Y, and she loves it to pieces. Cody usually meets us there because there is a lot of chasing a very busy 22mo old around, so he comes to help the pregnant mama! Today we were in the circle, doing the wheels on the bus song, and I saw Daddy come in but C didn't. Then all of a sudden she noticed him...hopped up out of my lap, ran right over to him, gave him a huge hug and then ran back to me to finish the song. Talk about melting my heart. I love watching her with her daddy..... I love the fact that she felt so excited to see her dad there at "nastics" that she had to hop up and let him know how special it made her feel. Sorry to get carried away, but it was a moment that I don't want to ever forget. Caidence did so well the rest of class, we absolutely LOVE to go and watch our little girl run, and jump and just be as carefree and happy, and proud of the new thing she just discovered she can do.....I love how her smile never leaves her face the entire time we are there. I just love to watch her grow, and become a tad more independent, and just be so simply happy.
Caidence has also taken great interest in her "imaginary play" toys. Her kitchen set from Santa is a huge hit, and we all just sit and watch her do so many things that mommy does in her kitchen. It's so funny because I would say she is relatively quiet, maybe even a little shy, but never ever does she miss something. She certainly takes it all in, processes it, and then applies it to whatever she is doing. One of my favorite things that she does is when she gets her cookies out of her oven, with her oven mitts of course, she turns to the dogs and says, "hot...hot..danger". Oh that sweet lil girl of ours...she cracks me up!
We have been trying to incorporate talk of baby E into everything we can with Caidence. The big day is approaching :) We washed a few of Easton's things that I want to take to the hospital with us, and I think today Caidence and I will start packing his bag for the hospital. I am so excited that very, very soon Caidence will officially become a proud and happy "big sis". I can't wait for the day when she finally gets to hold her little brother. Her turn may take a little longer than we had anticipated, but it will come....and when it does I know she will hug him tight, and show him nothing but unconditional love....She is the only one that can give him something that we can't: Love without any worries, without any questions of what's ahead for him, to her he will just be her sweet baby brother Easton.
Nae has just started gymnastics...or "nastics", really its the stay and play at the Y, and she loves it to pieces. Cody usually meets us there because there is a lot of chasing a very busy 22mo old around, so he comes to help the pregnant mama! Today we were in the circle, doing the wheels on the bus song, and I saw Daddy come in but C didn't. Then all of a sudden she noticed him...hopped up out of my lap, ran right over to him, gave him a huge hug and then ran back to me to finish the song. Talk about melting my heart. I love watching her with her daddy..... I love the fact that she felt so excited to see her dad there at "nastics" that she had to hop up and let him know how special it made her feel. Sorry to get carried away, but it was a moment that I don't want to ever forget. Caidence did so well the rest of class, we absolutely LOVE to go and watch our little girl run, and jump and just be as carefree and happy, and proud of the new thing she just discovered she can do.....I love how her smile never leaves her face the entire time we are there. I just love to watch her grow, and become a tad more independent, and just be so simply happy.
Caidence has also taken great interest in her "imaginary play" toys. Her kitchen set from Santa is a huge hit, and we all just sit and watch her do so many things that mommy does in her kitchen. It's so funny because I would say she is relatively quiet, maybe even a little shy, but never ever does she miss something. She certainly takes it all in, processes it, and then applies it to whatever she is doing. One of my favorite things that she does is when she gets her cookies out of her oven, with her oven mitts of course, she turns to the dogs and says, "hot...hot..danger". Oh that sweet lil girl of ours...she cracks me up!
We have been trying to incorporate talk of baby E into everything we can with Caidence. The big day is approaching :) We washed a few of Easton's things that I want to take to the hospital with us, and I think today Caidence and I will start packing his bag for the hospital. I am so excited that very, very soon Caidence will officially become a proud and happy "big sis". I can't wait for the day when she finally gets to hold her little brother. Her turn may take a little longer than we had anticipated, but it will come....and when it does I know she will hug him tight, and show him nothing but unconditional love....She is the only one that can give him something that we can't: Love without any worries, without any questions of what's ahead for him, to her he will just be her sweet baby brother Easton.
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 little...um, 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 I....it 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 babe.....it 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 go...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 it....it 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 gasped...my 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! Whoa....baby 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.....
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 little...um, 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 I....it 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 babe.....it 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 go...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 it....it 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 gasped...my 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! Whoa....baby 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.....
Subscribe to:
Posts (Atom)