Blogging

Some days I am not sure why I do it and other days I feel it's therapeutic in a way. I blog to have memories of things going on in my life, milestones and changes my kids go through, who needs baby books! I blog as a way to journal and find some peace at times.  My mind is bogged down with things I need to do, want to do, should do, and this is a little escape. 

I doubt I'll ever be a cool mom blogger, and that's OK, I don't know that I would want hundreds, thousands or more reading my everyday thoughts...but there are plenty of moms who do it and make money at it.  So sure it's crossed my mind, I could find a niche and blog it, but who am I kidding, I don't have time for that.  I have a small group of followers and some I am not even sure they read anymore, not that I blame them much.  I can understand as my life got all kinds of crazy awhile back and blogging fell to the way side. Though at times, because you know everyone who blogs, likes comments, I wonder if anyone is reading at all. 

So if you're reading let me know! :) Leave a comment and say hi lol ;)

Now on to my real reason for blogging tonight lol I've formed a team for the Spina Bifida Assoc of Alabama because as you my faithful readers know, Kaitlyn was born with SB.  So her team, Kaitlyn's Kingpins are participating in the bowl-a-thon on April 21 and I'm trying to raise money!!

Doesn't she just make you want to pull out your wallet and donate? Come on, she is ADORABLE! ;)

So if you're so inclined and want to help out Kaitlyn's team, please go to this link and donate! :)

3 Weeks, 21 Days, 504 Hours

Pick one, that's how much time until K's upcoming surgery. Those who don't follow our SB blog, you may not know but K has another de-tethering surgery coming up on Dec 6.  I am really not looking forward to this, but know it must be done. I have so much to do between now and then, 3 weeks doesn't seem like enough time. Though some days it seems like it's an eternity.

This week is insanely busy, something every.day of the week, and don't forget Thanksgiving is next week, which I am no where close to ready for.  I haven't even started thinking about dinner plans yet, just logistics of getting my mom here for the holiday, so she doesn't have to spend it alone at the nursing home. Of course coming up with the money for the food is another story.

Money, yes that is a hot topic around here on any given day.  Things aren't good right now and it doesn't seem like it will get better any time soon.  I am unable to work now, since I can't just put K into daycare and with all the other things going on in my life, I can't even fit in an evening job. Sigh. This surgery is a huge unexpected cost we were not expecting which means Christmas will be mighty small this year for the kids unless something miraculous happens.

The downward spiral continues. 

It's Fall Y'All

It's October! How did that happen? I swear this year is flying by for the most part, but there are days, days like today that make it seem like it's dragging by.  October is the time for Fall, and the weather seems to have arrived in Alabama. It was a cold 39 Monday morning when we got up, hello heater! I love fall, the crisp, cool air, the leaves changing colors, the pumpkin patches, Halloween and basically it is the kick off for holiday festivities.

Life is pretty much the same right now, just trying to make it through each day.  I did post last time about looking for work, and I've had one of the jobs I applied for contact me, had 2 interviews, and now it's the waiting game to see if I get it.  It would be near perfect, M-F, 20 hours, just need decent pay.  I don't feel great about how the second interview went, but I was nervous, I can't recall being nervous like I was this time, strange.   I hope to hear something today, even if its an email saying they hired someone else, because then I can move on.  I am not good at waiting, especially for something like this.

J just finished up her volleyball season, her team came in 4th place in their age group before the tournament, but after it they finished in 3rd.  Way to go Purplicious! It's amazing to see how far their team has come since the beginning of practice.  They were sooo close to beating the 1st place team, which actually ended up 2nd in the tournament, so they were very happy.  

October is also Spina Bifida Awareness month and I hope to help spread the info! I'll be writing a separate post on my SB blog asap, so I will not put tons here.  However, I am excited to say I met in person, in the last couple weeks, 3 great SB mamas and their kiddos! It's really nice to have someone to talk to here, locally and get support and advice. Sometimes I still feel alone in this world, but we're slowing getting out there and meeting others. So be sure to check my other blog later today on how you can help prevent Spina Bifida and how to live life even after the diagnosis.

Life

Life sure seems to be full of... well life.  I find myself wanting to blog but yet not really having time to.  By the time the evening rolls around and the kids are asleep I've got tons of things to catch up on.  So this will be a random post for sure. 

Since my last post, we've celebrated Hailey's 6th Birthday, Kaitlyn turned 10 months old and summer is coming soon! I am in denial that H is 6 and K will soon be 1.  :( I know I say this often but I feel like I missed out on so much the first few months with all the dr appointments, surgery, etc that I can't believe it's almost been a year since she joined the family. I will do a post for birthday pictures etc soon.  I'm behind on downloading pictures and taking them :/

I am still working, mostly about 3 days a week, which is just fine.  There has been scheduling issues for over a month now but miraculously the last 2 have been right.  I know, shocking. Most weeks I haven't been able to get out for a mno due to work, so I was finally off one night this past weekend and got together with some friends for dinner. So glad I did, I really needed that break and as always had a great time. :)

I am also busy trying to plan and keep up with Relay for Life stuff as normal and add the Spina Bifida bowl-a-thon coming up soon, I am spread pretty thin.  Kaitlyn returns to UAB on April 18 for her 6 month check in MRI and Renal Ultrasound.  I am not looking forward to it at all...she'll be more alert, and aware they are trying to put her to sleep. :( I know it has to be done and it'll become quite normal for her later but it still sucks.

So speaking of Spina Bifida and the bowl-a-thon, I need your help! (you didn't think you were gonna get off easy did you?)  :)

My team, Kaitlyn's Kingpins, has to raise at least $125 total, but my personal goal is $100 or more. I've donated $20 myself, and am asking you if you'll help? This is a great cause, and very very dear to me and come on, look at this face and tell me you can resist helping her???

I didn't think so! So go ahead and click on Kaitlyn's Kingpins and make a donation today!!!

New Blog

I feel the time has come to add another blog, one specifically related to K's diagnosis and Spina Bifida.   This blog is supposed to be varying content, but with all that is going on, I feel like I need a separate place to put it all down. So while I'll still update here occasionally on K's SB, it'll be more focused on my family and life as a whole. I also feel lots of mommy guilt, since I blog here mostly about K and leave J and H out. So I am working on that, plus there are other things I want to blog about too. :)

If you wish to stay up to date with the most recent info on K, please follow our new blog:
Our Spina Bifida Journey

This is a work in progress and is just beginning, we hope to see you there.

Healing

Miss K is doing great, her incision is healing properly and she got her stitches out today.  I was worried how she would react, would it hurt her etc, she just kinda of laid there like it was no big deal.  :) We return to UAB in 3 months for a MRI so they have a baseline of what her spine is like since the surgery. We were hoping for a 6 month break but I would rather them be thorough and know exactly what is going on with her.

Thanks for the thoughts and prayers!

Two Months Ago

Two months ago, my world seemingly got turned upside down. Two months ago K was born via c-section after trying for a vbac for 12 hours and not really progressing. Today I look back at that and am thankful because we had no clue about K's Spina Bifida.  We also do not know if her lipoma could have ruptured or not during birth as it was half filled with spinal fluid. The last two months have been stressful, happy, sad, worrisome and so much more but right now I feel at peace.

K had surgery approx two weeks ago and sometimes I am still trying to wrap my head around that. My 6 week old baby had major spinal surgery.  She could have been paralyzed, she could have major bladder/bowel issues, she could have required another surgery to put a shunt in her head.  She could have been. She's not paralyzed, had a very short term bladder issue and she did not need another surgery.  Miracles happen. Prayers work. Believe it.

When K was 4 days old I found a support forum for people living with Spina Bifida or parents of children with Spina Bifida:  Spina Bifida Connection .  This was my saving grace. The people there are inspiring, helpful, friendly and most of all been there. To be able to connect with other moms/dads who have been there and done that, to know I am not alone in this journey is priceless. Reading their stories, blogs, and helpful posts in regard to my own situation, I learned so much.

I learned that K having Spina Bifida is not the end of the world, just a different world. Her life isn't going to end or not be fulfilling because she has a birth defect. She will go on to lead a fulfilling life filled with love, joy, friends and family.

I am learning to live in the here and now and not in the future. No one can predict what will happen in the next 6 months, year or 10 years and rather than worry and dwell on it, I am living life and enjoying time with my 3 girls.

Countdown

We're in the final countdown to Kaitlyn's surgery, a week from today hopefully it'll be over and all will have went well. I am still having trouble processing that her surgery is next week. How did it get here so fast? We head down to UAB in the morning for her urology testing and also for a ct scan. I am not sure if we'll find anything out in regard to the test or if they will call us or wait until the pre-op appointment to let us know.  Her pre-op appointment is next Monday the 21st, so it's not that far off but I hate waiting. Hate.It.

We had to do a little scrambling to cover childcare for the older two girls since the surgery was sprung us earlier than we anticipated. However we managed to find some family to take care of them, though I am honestly not thrilled with the whole situation, but what's a mom to do? I am just going to pray about it and hope the house and my kids are still standing when I get back.

Miss Kaitlyn turned 5 weeks old today...and that's harder to believe I think than the fact of surgery being next week. She is much more alert these days is starting to focus on us when we're talking to her etc. I wish she would sleep a little better at night, but I know that'll happen in time. Sooner than later would be nice! ;)

Wish us luck tomorrow, will keep everyone updated when we know more info.

UAB Appointment Update

 Just wanted to give an update on Kaitlyn and her UAB appointment from yesterday. I know most of my blog readers already know all of this but a few do not :)

We saw Dr Wellons on Monday (the pediatric neurosurgeon) down at UAB and overall things went well. Originally we were told Kailtyn had a form of Spina Bifida called lipomyelomeningocele, but yesterday he told us she has Spina Bifida Occulta. She definitely has a tethered cord and he'll have to do the surgery to untether it along with removing the growth on her back. We were told the growth was most likely fatty tissue at HH NICU but he seems to think its more fluid than fatty tissue but I think she is considered to still have it, because she does have the growth and the spinal cord is attached inside of it.

We got to see her MRI and it does show the tethered cord but it also showed that her nerves were still attached which is why she can move her legs/feet so well right now. There is a chance that the surgery could result in leg weakness and/or Kaitlyn not being able to walk depending on if he has to cut the nerves or not.

We go back on 6/16 for an appt with the Urologist and also for her to get a CT Scan. Her surgery is scheduled for 6/22, but we have to be back on 6/21 for the Pre Op appt with Dr Wellons and then we'll stay there for the week.

The CT scan is being done to see if she has any fluid in her head, called : Hydrocephalus right now he doesn't think so but he wants to verify before surgery. If she does they will have to place a shunt to drain the fluid back down, and there is a chance she will need it even if there isn't currently fluid there, due to the surgery (since the growth may be fluid filled).

The surgery is expected to take about 4 hours (if no complications) and the recovery time is atleast 3 days, and she has to be flat on her back the entire time. So we'll be down at UAB from 6/21 thru 6/25 or 6/26 at the very least.

Thank you all again for your thoughts and prayers and please continue to pray for us and Kaitlyn.

Welcome to the World- Kaitlyn Nicole

I am happy to announce that Kaitlyn Nicole has arrived!

Stats: 5/8/10 @ 2:22pm via C-Section
7lbs 4oz and 19 inches long

Birth Story:

Friday evening about 11 pm my water broke at home, so we headed to L&D after my dad came over to watch the girls. We arrived around midnight and was admiited right away. I had been having a few contractions but nothing I thought was going to lead to a baby lol I had planned on trying for a vbac, so I did not want to be induced. The dr and staff was fine with it and supported me the entire time. I was 1 cm still when we arrived and after several hours of contractions, some painful, they checked me and I was about 1.5 cm but still only 50% effaced. We decided to keep going and see if I would dilate & efface more.

My contractions did start to pick up enough but not enough for progression. So I went ahead with a low dose of pitocin at 6 am but still was only about 2 cms and 50% effaced. At 10 am I decided to get the epidural since the contractions were becoming more painful and closer together. I was finally at 3 cm and they were upping the pitocin amts every 30 min, which lead to upping every 15 mins because I was starting to stall at 3 cm and only 60% effaced.

By noon the nurse and dr said we might want to start thinking about how long I wanted to continue to labor since I was at 12 hours by this point and not really progressing. We decided to continue for another hour and then check to see if I had any more progress and if not then we would make a decision. The contractions were still coming strong and were about 2 to 3 mins apart but at final check I was still just about 3.5 cm and 60% effaced. At 1, I decided to call it quits and have the c-section before my bp went crazy or Kaitlyn went into distress.

They began prep for my c/s, but the spinal meds were not working and did not numb me at all, so unfortunately they had to put me to sleep to deliver Kaitlyn. She arrived at 2:22 via c/s at 7lbs 4oz and 19 inches long. As you have seen me mention on facebook, Kaitlyn has a growth on her back/spine area. It's about the size of a small orange. It's called : Lipomyelomeningocele ( a form of Spina Bifida) , basically a rare birth defect that happens in 1-2 of every 10,000 babies born. Short version is that it is a fatty mass that is located under the skin on a childs back and normally located in the middle. The mass goes inward to the spinal canal and covered by skin.

They transported Kaitlyn to HH NICU soon after she was born, I only got to see her for about 2 mins after I woke up in the recovery room. Leon nor I got to hold her before they transported her. That has been the hardest part, not seeing or holding her since being born. Leon was able to go to NICU this morning and visit with her and hold her.

We hope to have some answers about the surgery she is going to have sometime today and what kind of side affects will be possible from this both before and after surgery and how long her recovery will be, when she'll be able to come home. This has been a very difficult time for us so we really appreciate all of your thoughts and prayers. I will continue to update as often as I can.