A Month

It's been a little over a month since K had her 2nd surgery, seems kind of surreal. I know it happened, but sometimes it doesn't seem possible that it was just a month ago.  My little girl is AMAZING. I am not just saying that either. Looking at her today, you'd never know she just had major spinal surgery a month ago. Overall she's back to her normal self, plays, laughs, loves, eats, sleeps, etc. Only thing she isn't doing that she was before is taking a couple steps.  I am trying not to let it get me down to much, after all she did just have major surgery, so it'll take some time for her nerves and muscles to get back to normal.

I am still trying to get all my thoughts together about K's surgery, but this will have to do.

Monday Dec 5 - arrival in Birmingham for CT Scans, goes well, but we spend all day at the hospital with pre-admissions, blood work and test results. CT results are good, surgery will be complex and expected to take 6 to 8 hours.

Tues Dec 6- arrive at Children's Hospital around 5:30 am for 5:45 check in, which took much longer of course. Called back around 6:30 or so and they take her off to sedation at about 8 am and we're told surgery will start within the hour. 

This is where the waiting begins, there is no way to explain how hard it is to sit and wait to hear news about how your child's surgery is going.  I was antsy, nervous, scared, and probably any other emotion you can equate with this.  Finally around 9 they called to let us know that surgery had started.  We were told it would take 6 to 8 hours, so we knew we were in for a long day.  Thankfully they update the family every 2 to 2.5 hours, that makes it a little more bearable. Except when it's slightly over 2.5 hours and you begin thinking the worst. However for the most part our pager went off like clock work right around the 2 hour mark. 

Around 3 PM we got the call the surgery was done and she was doing good.  So then we wait for K's neurosurgeon to come out and talk to us.  I've never been more happy to see this man ( well except after her 1st surgery) and I wanted to run up and hug him. He tells us about the surgery, how things progressed, what needed to be done and what he did.  At one point he's telling us he has rolled up her spinal cord like a canoli and stitched it up..but then he said they lost all nerve roots. I sat there in stunned silence for what seemed like eternity, I know I had to be holding my breathe when he finally spoke again. He took all the stitches out and the nerves came back. I don't know how I didn't break down at this point. So he slowly stitched the spinal cord again, doing 1 stitch at a time to make sure the nerves didn't stop again and in the end everything was good.  I breathed a sigh of relief and anxiously awaited the nurse to come take us to the PICU waiting area.

K spent the night in the PICU because she had a drain in to watch for fluid and extreme bleeding, thankfully she only had to spend 1 night in the PICU. When they first brought her into the PICU area, they stopped in the hallway so we could see her, oh she looked so pitiful. Her eyes were swollen shut and she was crying for us and reaching out for us. It was heartbreaking. I knew it would be hard, but I had no idea how hard. They took her on back and after she finally got settled in and visiting hours started we went back to see her. She cried and cried and reached for us and wanted for us to pick her up. They ended up having to give her a dose of morphine to get her to calm down, so we went ahead to eat dinner and came back. She was asleep so we went ahead and went back to the hotel for some sleep, we were completely exhausted by this point.

Wednesday morning, we headed back to see her and she was doing a little better, still wanted us but not quite as distressed as the night before.  She started signing drink, so we got her some juice and she drained it lol. She was really thirsty and started signing more right away.  It made me feel better that she knew what things were and could ask for it.  Later that day we she got moved to a regular room and it was an awesome corner room, we had our own Christmas tree right outside the door. The first few days went by pretty quick, she slept off and on most of the time, we took turns sleeping at night in case she woke up so she wouldn't try to get up etc. She never had any other pain meds except Tylenol and Motrin once we were in the regular room. Amazing I tell you.

We were in a regular routine, almost as if we were home, cathing every 4 hours during the day, eating meals and snacks and naps. Only thing she couldn't get up, which by about day 4, she was done with laying down and kept trying to raise up in the bed to at least sit.  It did hurt some though, you could tell and she would lay back down.  Sunday morning her doctor came in and said we could pick her up, I was so ready and so was she. She clung to us and didn't want to be put back down and I didn't mind. While waiting for a few hours to pass to make sure her incision was not leaking etc, we walked around, saw Christmas trees, looked outside etc.  She kept smiling and waving at the nurses, so I knew everything was going to be OK. 

The first week home, was a little rough. She was extra clingy, sat with me on the couch 90% of the time, which was sweet but I felt bad she didn't want to get down and play. We continued rotating the meds at home to keep her comfy and returned about a week and half later to get her stitches removed. That was not fun, she cried from being held down and was not happy with us. Thankfully it went by fast and the doctor thought it looked great.  Since then things have been pretty much normal for us, trying to get into routine and get her back to where she was physically before the surgery.  So we've upped PT a few more times this month, trying to get her into outpatient therapy as well, waiting to hear back. 

We return Feb 6 for our post surgery MRI, hoping it goes well and it's not to stressful for K. I am worried she'll freak out more this time when they take her away for the sedation, but we'll see. Hoping this will be our last appointment until our April SB clinic day.  In the meantime I have 2 birthday parties to plan, one of her big sisters turns 7 in March  and then K turns 2 in May!

So that's been our journey in the past month, not clear nor concise, but i wanted to write while I was thinking about it. I am sure things will come to me and I'll edit this or just add another post.

Picture Time!

K turned 19 months old at the hospital

20 Months Old

Happy New Year!

A Week in Photos

It's taking me longer than I thought to write down a post about surgery week, so for now a few pictures from from the week for Miss K.

**There are photos of her incision further down the page, just a warning in case you're a bit squeamish, but they aren't that bad.

The night before surgery, very tired

Lipoma, before surgery

Lipoma, scarring from 1st surgery

Lipoma, also sacral pit

2 Days after Surgery

Still wanted to play with daddy's phone

Balloon from  SBA of AL

Day 3- looking more alert

Incision & stitches, goes up most of her back now

Stitches to the right are from the drain

Side view, a lot more fat was taken out this time

Sitting upright in bed, trying to get her balloon

Sitting with daddy! Happy to be held :)

Home! Loving her new elephant pillow.

MRI Update

I am so sad, we found out on Monday that Kaitlyn has to have another surgery in December.

About 2 weeks ago, we took Kaitlyn for her 1st Spina Bifida Clinic. We were set to see her Neurosurgeon, Urologist, Ortho & Rehab Med Drs plus have x-ray's, renal ultrasound and urodynamics testing done. We did our testing in the morning and saw the drs after lunch. Anyway, we saw the uro first because he did the urodynamics test, which basically was our 1st step going downhill. This test should have been very uncomfortable for her, but she really just laid there and played with the nurse the whole time and laughed. The first time she had it done at about 6 weeks or so she screamed and screamed. So turns out, he believes she is losing sensitivity and that her bladder is not emptying completely. So he put her on Ditropan to help the bladder some and told us to start cathing her again.  So we are doing that about every 4 hours and she definitely needed it, because she will have a pretty wet diaper, and still we get urine after, even if shes not drinking a lot.

We did not get to see our neuro because he had emergency surgery but he popped in and said that he wanted to order a MRI because it could be possible she is retethering. OY, not really what I wanted to hear. We went ahead and saw the ortho and rehab med drs, which that part I thought went well. We got hooked up with a service here in AL, that helps pay for equipment (braces, wheel chairs) etc, and mostly it'll be no out of pocket costs for us, which is awesome. The ortho/rehab drs both suggested she get more PT and some OT because they think it would help her in walking, as she isn't fully walking yet. She can cruise furniture, push toys across room, but not much else. It was sounding so good that she would probably be walking by the time she's 2. That was like music to my ears.

Fast forward to her MRI this past Monday. We got in to the see the NS and he was like come back here with me, that was the 1st sign I knew something was wrong because he normally talks to us in the pt rooms, and the nurse took K for a bit.  So he pulls up her MRI results and is showing us the various things that had changed since her last MRI (about a yr ago) and several things were different. First her cerebellum was being pulled down, which means her spinal cord has retethered. She also has some spinal fluid pooling at the bottom of her spine, near her lipoma (Cyst) area and on top of all that, she has a vertebrae that is growing in almost a J shape... :/ her spine is straight, then it has a curve, down towards the bottom and then straight again.... :/ They didn't notice this prior because she was so small and because it hadn't fully formed, is what he said.

So she needs surgery to detether her cord again, he's also going to remove more of the fatty tissue from the lipoma this time, she'll still have some but it'll not be as large. The incision is probably going to be longer and the surgery sounds more complicated this time around. He can't give exact things he'll have to do until he gets in and sees the spinal cord and how bad the nerves are around it and if they grew in etc. If so, there is a chance she will lose more function in her legs/bladder depending on the nerve damage and/or if he has to cut any. He of course is going to try to avoid that at all cost.

He also ordered 2 CT scans on the Monday of her Pre-Op visit, one on her head and one of the spine. The head one is to double check the spinal fluid/cerebellum and make sure there isn't any spinal fluid building there, because if could be Chiari Malformation, which could require a shunt to drain the fluid, which is another surgery. Praying it's not, he doesn't think it is off hand, since her head size hasn't changed more than normal growth.

Surgery is slated for Dec 6, she'll have to be in the hospital for at least 5 days on her stomach to heal and make sure there are no problems etc.  Please just pray for us and/or send lots of positive thoughts our way. I just don't know what to do, I thought she was doing so well, trying to walk more etc, but now I feel like it's all come to a stop. If there is nerve damage and he has to cut any nerves, she may never walk. I know there could be worse things, but I was so hopeful after our visit with the ortho dr 2 weeks ago, now I just don't know.

* sorry if this is repeat for some of you reading, but I am trying to keep track of everything in 1 spot for future information.

Surgery Week Pictures

Just a few before and after photos of Kaitlyn, there is one picture of her incision at the bottom of this post.

With daddy at the hotel, two days before surgery

Kaitlyn after surgery

She had to be on her stomach or side the entire time

Even eating on the side, 1st bottle after surgery

Looking at mommy intently

2 days after surgery, not happy. I felt bad for her because she had not been picked up in several days.

Finally fell asleep

Getting to hold Kaitlyn for the 1st time after surgery

Incision area after surgery (about 3 days later)

Healing

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July 12, 2010

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

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July 8, 2010

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

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June 27, 2010

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.

Countdown

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June 15, 2010

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.

Power of Prayer

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Wed May 12, 2010

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.
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8/10/2010

The more I think about this doctor, the more mad I get. This man never came to talk to us in person, EVER. I was told by a friend he was a great surgeon but had a terrible bed side manner...well considering he never came to talk to us about a newborn that was in NICU with undiagnosed Spina Bifida, yah I think he does.

We really had a terrible experience the whole way through this ordeal.  I can't even begin to describe how it feels to know nothing about your child's birth defect and to be in a different hospital than they are.  It's surreal, you don't feel that it is really happening, until you don't see your baby while you're there. It's different when you come home to an empty crib and unpack the baby clothes you took to bring baby home in. It almost feels like a dream, but it's more like a nightmare that you pray is over soon. Thankfully our nightmare only lasted 5 days, but that was 5 to many.