Thursday, March 31, 2011

Thursday March 31st

Neuro came by and took additional samples, said that they were ready to move forward with shunt revision surgery tomorrow around noon.  This is excellent news and keeps us moving forward.  The recovery from shunt surgery typically isn't difficult, so the weekend will be plenty of time to heal up.

Lauren will have a VUCG Monday:

"a VCUG is 'a specific x-ray that examines the urinary tract. A catheter is placed in the urethra (tube that drains urine from the bladder to the outside of the body) and the bladder is filled with a liquid dye. X-ray images will be taken as the bladder fills and empties. The images will show if there is any reverse flow of urine into the ureters and kidneys,' which can indicate that your child has vesicoureteral reflux."

This test will tell doctors a lot about her urinary and kidney anatomy and functioning.  Apparently, Lauren is VERY difficult to cath and has had the same one in since her 2nd day of birth.   This concerns doctors, leading them to believe she may have a very long tract...  Additionally, children with spina bifida usually have limited bladder control or abilities to fully empty their bladders independently without any assistance.  So, Urology will examine the test and determine the best plan for Lauren.  This may require us to do nothing because she may be able to use her bladder alone and kidneys are great, cath her daily every 4...hours, require another surgery for an abdominal urinary stoma (?)...

So, needless to say Monday will be a big day while we wait to hear back from Urology (hopefully won't have to wait until Tuesday).  Depending on the results will determine how quickly we can get home.

Wednesday March 30th


My little one was a very alert little girl today.  She jammed out to the radio, listened to some Beethoven, and gazed at polka dots.  A very busy day indeed for Miss Lauren.

Still trying to figure out the ostomy bag and being as patient as possible.  Her skin grafts are making great progress.  The left thigh has been healed (daily ointment applied) for a week now.  The right thigh looks much better since her dressing change.  Maybe two more weeks for it to heal.  Her flanks have made a ton of progress, but it's going to still be a while before they are completely healed.  They were just large and thick, so they had a lot of work to do.

Today was Lauren's first physical therapy lesson.  We have about 8 stretches... that we will work on daily for the time being to help her hips, knees, and ankles.  She has decent movement on her own in her hips and can bend her knees (right more so).  I am very surprised and pleased with what she can do, and in the last 3 weeks how much progress she has made.

Lauren had her Wednesday fix of grandma and Adrianna.  They even got to help out during her cares, feeding and burping her and being my assistant:)

Feeding little Lauren

Tuesday, March 29, 2011

Tuesday March 29th

Today was a very smooth, but MESSY day!  Lauren's ostomy bag has been a trouble since the beginning.  It doesn't want to adhere next to the stoma and between the mucus fistula (other end of tube-tied off for later surgery).  We have to change it daily 3-5 times.  Normally, they get changed every 3-5 days; so you can imagine our frustration.  Each nurse has their advice and ideas (luckily patience too), but the bag conquers. 

So, the ostomy nurse we called to save the day-she showed us some cool putty stuff to help with the adhesion process, but it leaked too.  Bag #3, let's hope it works....

Otherwise, Lauren was a cutie pie, eating and now burping good.  I love her sooo much-leaky or not:)

Monday, March 28, 2011

3 Weeks Old


 Well, today Lauren started off with high aspirations for her surgery to be Wednesday, BUT a bit later doctors changed minds after labs came back and decided to wait until Friday.  Which, selfishly makes me bummed, but I know it's best for my munchkin.

Occupational and physical therapy came by today and did an initial assessment, which went well.  They showed me some new exercises and stretches to work on daily with Lauren for the time being.  It was a great visit.  they will be by a couple of times each week to personally work with her.

Not only did Lauren turn 3 weeks old today, but got transferred to the room across the hall, which is a bit larger and has a fabulous view with a window.  So, goodbye little cave and hello sunshine!

On anticipated day to go home, I have not heard yet.  If I were to make a guess I would say in about 12 more days???

Talking to mommy

Thinking, hmmm....

My new room

The weekend

Lauren's external shunt is operating well, draining as it should.  Lauren had her favorite daytime nurse on duty, so she was spoiled and well taken care of.  I took advantage of this opportunity and went home for Saturday night to see my hubby and girls!  It was really nice seeing them and refueling myself for the upcoming week.

Friday, March 25, 2011

Who's a chunky monkey???

LAUREN IS!!!  Lauren has the cutest double chin and beginning to get little rolls on her back, I just love it.  Her weight goes up and down a few ounces.  I believe she has grown from 5lb 11oz to 6lb 3oz.

No problems with the external shunt today.  She ate and slept like a champ.  If I could, I would give her a medal for today's performance:)

When the doctors made their rounds this morning they said that her numbers were looking good from her spinal fluid.  They will do additional blood work on Monday.  We are anticipating a new shunt either Wednesday or Thursday if things move along just as good-however it could be a few days longer if she needs it (I just get selfish I want her home, but understand that I need to be patient while she heals).

Chubby Cheeks

Thursday, March 24, 2011

Thursday March 24th

Overall was a pretty good day.  Lauren was taken off of pain medication this morning and wasn't fussy one bit.  I am continually amazed at how patient she is, especially with her milk!  We have to do all of this care stuff with her awake while she waits for her bottle every 3 hours.  I just hope she stays this patient and content when we get home:)

Although, this afternoon I noticed that her external shunt appeared to not be draining, so neuro was contacted.  They came and examined it and noticed that she had a small blood clot in the tube that was blocking the drain.  Apparently this is common and does not put things at a high risk.  They will be monitoring her outflow every hour, rather than every four.  The night nurse was really nice and on top of her care.  I'll let you know how things develop.

Thanks to Erica for the visit and help with Lauren today, love having you here with me!

Wednesday, March 23, 2011

Looking great!

Hello, Ms. Sunshine!!!
The external shunt tube
Well, little miss Lauren went down for surgery today after lunch.  Surgery went well and she is recovering beautifully in her room.  She is wide awake and super content.  Her drain (external shunt) doesn't look near as bad as I had anticipated.

Surgeon said to expect the drain for 7-10 days.  Once spinal fluid comes out clean, she will be scheduled for surgery to remove the external tube and get a new shunt (which will be located in a different spot in the head this time).

I couldn't be more proud of her strength, I love Lauren so much.  She is also super lucky for all the people that have been praying for her recovery.  The spirit of generosity and kindness is definitely alive in our circle, so a BIG FAT HUGE THANKS!!!  We just need to get through these last hurdles so we can get home:)

Lauren would also like to thank Grandma and Adrianna for the company today!

Adrianna

Grandma

Tuesday, March 22, 2011

Back to surgery, ARG!

Well, neuro came by and tapped her spinal fluid through her shunt and found that the shunt has an infection.  This means that Lauren will have surgery tomorrow to have the shunt removed.  She will have special tubes connected to her old shunt sight draining the infected fluids.

Doctor said that expect Tuesday...give or take for it to heal completely from the infection.  Then she will have another shunt surgery to replace it with a new one (to keep the hydrocephalus under control).  Which by the way they took a head ultra sound today and her ventricles are looking great, well under control.

Lauren has been sleeping so much, I figured she was just doing her healing, but this is a sign to the infection, so hopefully she will get to feeling better soon.  I feel so incredibly awful for my little one!  I don't know how she stays so strong, she is just an incredible little fighter.  So proud of her already.

I'll be sure to keep the blog posted on her surgery tomorrow and her progress after.

Monday-Two weeks old

Lauren has been sleeping and eating like a champ.  Her body is obviously working overtime while she sleeps to heal and fight infection.  We have some elevated levels from labs that we are going to try and pinpoint.  Perhaps neurology is going to run some scans and taps to see if it's the shunt.  The doctors are looking closely at her.  Even so, her temp remains steady-a little elevated, but not high.

Thanks again for all the well thoughts!!!  Also, to the girl scout leaders for my huge tub of goodies:)

Super Sunday...

...because daddy and sisters came to see Lauren today!  The girls were soooo excited.   It's amazing how cute and loving they are with her.  I missed my family more than even anticipated-I just melted the moment I laid eyes on all of them.  After our visit, I went home that evening with the family to get my jeep and drive back Monday morning. 


Saturday, March 19, 2011

Saturday March 19th



Lauren was visited today by Aunt Gina and cousin Jessie.  It was quite an eventful time-as her ostomy bag had to be changed and fixed...(lol).

Lauren's temp has been the same, not too high, but closely monitored.  She continues to eat well and keep a pretty good temperament.  Her wounds are healing nicely, the flank skin grafts still have a ways to go though.  Which, I have been told is normal.

She continues to make me smile and fill my heart with joy each and every second.  Tomorrow, her daddy and sisters will be able to visit-YAY!!!

Friday, March 18, 2011

Friday March 18th

Lauren's temp was stable overnight.  She is running a mildly elevated temp currently-but nothing to be highly concerned about since she took some doses of antibiotics yesterday afternoon.  She continues to eat well and isn't too fussy.  Her medical team REALLY seems to be on top of everything.  They will run additional labs on Monday...

Thank you Marsha and Jess for the visit today-it was great seeing you!  You have big generous hearts!

Thanks to Adrianna and my mom, Erica and Sheri, Kasey, Gina, Jeff and Linda, and my cuties (and cousin Jessie tomorrow) for making trips, it's so nice to be with family and friends!  Keeps me going and keeps me a little more sane:)

Thursday, March 17, 2011

Happy St. Patrick's Day


 
Lauren greeted me this morning with a cute little green bow; we don't need any more pinches:)  Today Lauren is a little fussy and running a mild elevated temperature-so we are running some cultures and blood work just to be on safe side.  She has slept well and is eating good too-just some difficulty burping cause she is sore from shunt surgery.  Overall, she is still a champ and continues to amaze me every day.

I'll keep you posted on the temperature and results from labs, I believe they will run some more antibiotics too.

Lauren's temp went down this evening.  We are still waiting on labs to see if something is present.  However she is doing good and is nice and settled.

Wednesday, March 16, 2011

Cloud Nine

Today was wonderful because I got to hold Lauren for the first time.  The nurse just moved her little cushion bed onto my lap-it was so special and overwhelming!


Lauren slept through most of the night.  She was peacefully awake for a while this morning, then crashed just in time for grandma and Adrianna to arrive.  However when she drank her milk, she woke up for them to peak at her eyes.

The shunt sights look good-not too swollen... I have to wash her head daily for two weeks to circulate fluids and blood around.  You can REALLY feel all the excess fluid from the hydro, but I have noticed in some areas it looks better already.  They have the shunt slowly draining the fluids, so overall it will be a while before her swelling goes completely to normal.

Lauren is sporting her head probes again (for a study) and a cute new bow today:)

Tuesday, March 15, 2011

Shunt tuesday

Lauren was sleeping this morning, which was really good considering she was a hungry little baby.  She went into surgery around noon.  Dr. Tulipan was her neuro surgeon.  He said that everything went really well.  We just have to watch closely for a shunt infection-which is the most common problem within the first few months.  They placed the shunt just behind her right ear and drains into the abdominal cavity.  She has an incision in both locations (one behind ear and the other an inch or two above her bellybutton where the tube drains into under skin).  Right now she just got her pain meds and is settling down-hopefully for a good nap!  When doctors make rounds I'll find out when she can have milk again (later tonight or tomorrow)-the sooner the better though.

Thank you for all the prayers and well wishes-I know that God had a huge part in all of her well being and healing-but the prayers behind it all make it that much stronger-Thank you, thank you!  I am on a daily basis amazed at the thoughtfulness and compassion among my friends and family near-far, close-extended have been.  We are a very lucky set to have you all!!!!! XOXO

Monday, March 14, 2011

Happy ONE week!



***Be sure to check out my other new video in Saturday link too***

Today Lauren is one week old and doing fantastic!  She slept all morning, woke up just enough to take bottle and burp.  Since her noon feeding she has been quite lively and listening to some music and her mommy.

Doctors came by and increased her milk again, so that's nice.  Neuro came by and said they will be performing her shunt surgery tomorrow-probably noon/afternoon.  She will more than likely be very cranky before hand cause she will be on a no eat diet (as we all are before surgery).  I have been told that the surgery itself will be about 30 minutes, but by the time anesthesiology gets their stuff completed it will be a little while.  I'll be sure to keep this blog updated once she goes to and from surgery and her recovery.  If you would like more info on shunts you can visit this link: http://www.nlm.nih.gov/medlineplus/ency/imagepages/9569.htm and http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm

I'll post a video later today or tomorrow of the little butterfly:)

Plastics came by and redressed and cleaned the skin grafts on her abdominal sides (love handle area).  About 2/3 of the upper part is taking VERY well, the bottom portion is doing OK, but nothing to be concerned about.  She seemed pleased.  The graft sites in her thighs are healing extremely well.  These can be cleaned and changed daily now.

Her spinal incision is now exposed since they changed all the dressings.  It looks really great.  Nice and straight-maybe about 4 inches long from the center of her back all the way to the bottom of her spine just above her little bum.

Sunday, March 13, 2011

Hello Sunday!

As I entered Lauren's room this morning, she was bright eyed and looking around-apparently somebody wasn't affected by the time change.  She continues to do well.  She got her milk upped today, so she is getting more to eat and making her bigger and healthier.  She looked cuter than ever, but I am a little partial. 

The nurses have been really good at teaching me and allowing me to do some of Lauren's care.  I get to take her temperature, clean her ostomy bag, feed and burp her, and assist in rotating her positions.  I love being able to be hands on, I feel more connected as a mommy.

Neuro came by late last night and said the shunt surgery will be early next week, probably Tuesday.  I'll be sure to keep you informed.  This is done to relieve the pressure form the hydrocephalus in her brain-specifically the ventricles.   Here is a link: http://www.nlm.nih.gov/medlineplus/ency/imagepages/9567.htm

Thanks to everyone who follows our journey, it's so nice to see, especially when such long days are spent in this little room-keeps me connected to everyone.

Saturday, March 12, 2011

Sister Saturday



Today Lauren got to meet her biggest fans-Taylor and Peyton.  It was really nice seeing them together.  Of course Lauren didn't want to open her eyes for them.  Even after they tickled her armpit, played This Little Piggie, and sang Itsy Bitsy Spider.  Very entertaining to mommy, but not quite enough to wake up the sleepy head.  After that her nanny, Aunt Gina, and Uncle Jeff got to visit as well-they got lucky enough to see both eyes for a minute.


Today Lauren got her milk amount increased and did very well with each feeding-she is a very gassy baby but happy baby.  They took her off pain meds at 2:00 and is doing wonderful still.  They expect her to have shunt surgery for the hydrocephalus Monday.

Friday, March 11, 2011

It's a good Friday!



Well, today was good for Lauren.  She started the day off by getting her tube pulled from her tummy (out of her mouth).  Then, the plastic surgeon came by and changed her dressings on her legs, which now look much better.  She also removed two drains from the growth sights, less tubes for her.  She also had her head ultra sound to measure and monitor her ventricles.  It looks as if she will require a shunt, which was expected.  This will probably go in early next week.

She had her very first feeding today!  Not only that, she got to use a bottle.  She loved it and sucked it down.  She crashed out after and enjoyed a long nap.  We look forward to another feeding this afternoon.

 Oops, she only weighs 5 lbs. 12 oz. There was a mistake in morning's reading.

Thursday, March 10, 2011

Thursday March 10th


Holding mommy's hand

Today Lauren is recovering from her surgeries.  Early this morning she was wide awake following daddy and mommy's voices and LOVING our touch.  Later, she got a tube taken out (yay)!  Doctors came by and said that she is doing well.  They are hoping to redress her wounds on her legs and take out two drain tubes from her back and abdomen sometime tomorrow.

She was just too sweet today, making little puppy noises as she slept.  She was also visited by Adrianna, who held her hand for a long time:)

Wednesday, March 9, 2011

Colostomy

OK, so this part was a surprise.  Lauren had to have surgery this morning for a colostomy.  This will stay present for a few months until she is completely healed from other surgeries...  We have been told that she will require two more surgeries over a few additional months to finish the task of creating the tube for her to be able to make a proper bowel in the proper place...

Daddy and I went to visit her after she recovered-she was so peacefully sleeping.  As we were getting ready to leave she opened her eyes for us.  First time for me since i saw her at birth, so I was really excited!

Here is a link that shows her condition if you are interested:
http://www.nlm.nih.gov/medlineplus/ency/presentations/100030_1.htm

Spinal Surgery

On Tuesday morning Lauren went in for her myleomeningocele repair.  Dr. Tulipan is one of the best in the world-which eases some nerves.  We were told that everything went very well on the repair.  Even better news?  Her lesion through ultra sound was L1-L2, however once they were able to look first hand they believe it to be L3.  This means that she may have more mobility in her legs...only time will tell.

Upon assessment before surgery Dr. Tulipan realized he would need more skin to close her wound completely.  So, a plastic surgeon took skin graffs from her little thighs and used these to fix her back.  This will make the recovery time MUCH longer, but will fix our little girl.

Happy Birthday Lauren

At 12:05 on Monday, March 7th Lauren Nicole welcomed the world at 5 lbs. 11 oz.

So, you can imagine as I awaited to hear her first cry...that was shared with me.  I was just so overwhelmed to be a mommy all over again.  Doctors can tell you all the things to be prepared for...but they always forget to mention that she will take your breath away. 

The first time I saw her-I didn't see her defect, I saw her beautiful little face, squealing her little cry.  The moment I brought my hand to the top of her back and spoke she instantly stopped crying-as if she waited all this time to hear me speak, just as I waited to hear her first cry.  It was a precious moment I will always remember.


Daddy took Lauren to the NICU, where she will remain during her visit Children's Hospital.
 

Diagnosed

In October we found out through ultrasound that our little girl has spina bifida.  Obviously a shock, but regardless, she was still a blessing.  God created our little girl perfectly as He intended her to be (perfect in our eyes and His).   

We had a long emotional journey through the pregnancy with many tests and appointments.  During this time we were able to gather a lot of information to prepare for our little one's new life. We chose Vanderbilt Hospital to deliver, offering us an enormous amount of opportunities and resources for Lauren.