Breathe

I am trying to catch my breath and just breathe, but it's hard.  There is so much going on in my head right now, that I can't seem to focus on just one thing.  We're in the final countdown until surgery day for Kaitlyn, which is this upcoming Tuesday.  This week has been crazy for us, well for me mostly. It started out OK on Monday, but quickly became overwhelming on Tuesday, both good and bad ways. First the good, I have some really really great friends, and I feel like I can't say Thank You enough to them for what they did for my family. They are amazing! 

The day started going down hill though, my mom had a rash, that kept getting worse, come to find out she had something that had some mushrooms in it, which she is allergic too.  Somehow this wasn't on her chart, so they didn't know (GRRR) she was allergic. Thank goodness it isn't a life threatening allergy! They had been trying to treat it, but nothing was helping, so they decided she needed to go to the hospital.  She has been there since Tues afternoon and is scheduled to be released today. The good is they changed the meds and the rash seems to be getting better, the bad, her blood pressure has been crazy high (which she has a problem for and is on meds) so they had a heart dr come in as well.  They put a monitor on (she has issues with AFIB and in general caused the strokes in March) to keep a check, did an Echo etc, came back fine. 

Today she told me last night the monitor went off, because her heart rate kept dropping real low, they had to keep rotating her and making her talk.  This part scares me, in fact yesterday the heart dr told her she could have a stroke within a year if her blood pressure doesn't get under control.  We already knew this since her stroke was so large and affected so much of her brain, that she is more likely to have another one, she has to many risk factors against her. So this is just something else to make me worry more while we are gone next week. 

I am running around like crazy, between the girls basketball practice, team pictures, games and girl scouts, that I can't get anything done, or so it seems. I have a long to do list and haven't crossed anything off yet, since most can't be done until Sunday really (packing etc).  I am dreading leaving the big girls, I know they will be fine, but I hate having to do it again.  I think Hailey is having a hard time with it, she's acting out a lot more right now, so I am hoping to have some quality time with them (somehow) this weekend before we leave on Monday morning.

I am just praying everything goes well next week for Kaitlyn's surgery, that J & H have a good week and that my mom doesn't have to many issues while I am gone.  Since she's been here, I've been to visit just about every day for the last 7 months or so, this is the 1st time she will not have someone come visit for so long, so I am worried.  I know my phone will ring like crazy, because she will forget that I am not here to come see her. I really don't need that extra stress, but I don't see a way to avoid it. 

So if you're inclined, say a prayer for us and/or send some good thoughts our way, they are very much needed and appreciated.

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. 

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.

UAB Surgery Update

I just realized I never updated my blog about K's surgery this past week.  Sorry about that, was just to busy emailing updates, posting on facebook and HMMT to get here too. So anyway, K's update.

We arrived in Birmingham on Monday morning for K's pre-op appointment with Dr. Wellons, which led to a series of other stops here at the hospital, pre-admissions, and lab work being done. First thing we found out was that K's surgery had been moved to Wednesday morning at 7:30 am rather than Tuesday due to an emergency case coming in. It was a little frustrating but I am glad we did not have it Tues afternoon, because it would have made for a very very long day.  So bright and early Wednesday morning we were here at Children's Hospital (early as in 5 am!) and thankfully was one of the 1st called back.  Once we got back to the pre surgery room, we spoke with the drs and such and answered questions about K etc and then they took her off to get drugged up. Surgery was expected to start soon after but it was 8:30 before it got started, and they told us about 3 to 4 hours.  True to their word, right about 12:30 we found out the surgery was complete and was successful. The staff was great on updating us every hour to hour and half on surgery and K's status. 

She had to spend a couple hours in recovery while we waited on a room and bed to be available and it wasn't until about 4pm we got to the room and they finally brought her in. It was so great to see her, I was really  worried she would be hooked up to all these things but she only had her IV in. The worst part not being able to hold her. Dr Wellons came and talked to us right before we got the room and told us how everything went and thankfully he did not have to detach any nerves during the detethering. She still had movement in her hips, knees and ankles as before. He did have to leave a smaller version of the "hump" aka cyst so that the nerves would remain intact and everything would heal properly.  So she's had to be flat since surgery, on her stomach or on her side with no one picking her up. We've had to feed her while she's on her side and change her diaper with her on her stomach.  We've gotten used to that, but it still sucks to not pick your baby up when all you want to do is comfort her.

Overall she's doing well post-op with the exception of bladder control. She's unable to really urinate right now, could be the nerves are just irritated and swollen or it could be a side affect that she has to live with. I am hoping for the first and hope it resumes normal functions soon. Right now she has to be cathed every 4 hours and boy are the nurses having a hard time.  She's so small and swollen it makes it quite difficult and to think we are going to have to do this at home, sigh. I hope it's just short term, so please say a quick prayer on that.

We are waiting to find out if we are able to leave tomorrow (Monday) to come home. Dr Wellons  wants us to pick her up and hold her as we do at home to check for spinal fluid leaks in her incision area.  So far so good on that, so if all goes well we'll be able to return home.  I am ready, the girls are ready for us to be home as well. I'll try to update with more info later this week after we get home and settled.

Thank you for all the well wishes, thoughts and prayers for baby K and our family.

Power of Prayer

I believe in it. Kaitlyn was released from the hospital today and is doing great.  We went into visit this morning and to get some answers from the doctor who had not called as promised and I was NOT going to leave the hospital until we had them. The nurse came over and started talking about the Dr coming in this morning and that the surgery would be outpatient so she would be going home.  I was kinda in shock, had tears in my eyes because all along this is what I wanted but only if it was 100% safe to do so. We never saw the Dr in person, but hubby did talk to him on the phone and found out they are going to refer us to another hospital and a pediatric neurosurgeon who is more trained in this particular issue.

So tomorrow we have a follow up appointment with our regular pediatrician and they will get the referral for the other doctors. We have two places to choose from, UAB and Vanderbilt, I've heard good ab out both but want to do my research and figure out which we should choose. The surgery will also not be done until she is a little older, my guess is around the 2 to 4 month stage, but that's just based on what I've read online.  They want her to get stronger and bigger before doing the surgery and since hers is closed it's not a have to be done immediately surgery.  Though I prefer it to be sooner than to much later as I don't want it to affect her everyday life.

Thank you  to everyone who said prayers and kept us in their thoughts during this rough time in our lives and please continue to think of us and baby Kaitlyn for her upcoming appointments and surgery.