Wednesday, May 25, 2011

There's no place like home....

We are home!!!!  Monday night at 10:00 pm my over the moon daughters welcomed their baby sister. We feel so incredibly blessed and lucky.  I'll post pictures soon.  I have been so busy being a mommy at home and am so behind in so much, I haven't had time.  But, wanted to extend our appreciation and gratitude for all those that prayed and were with us throughout this journey.  Love to all!!!!

Wednesday, May 18, 2011

A new room

Lauren's surgery went well.  They went in the base of the shunt and shortened the catheter.  Before they finished up they tested the shunt and took x-rays.  Her head already has lost the swelling...  Her pain has been managed extremely well.  She has been sleeping away!


This morning before surgery we moved to another pod into a new room.  We still have a window, it's a little smaller, but fits us perfectly.  It gave me a chance to organize her things and my stuff.  How in the world am I going to fit everything in here and stuff from RMHouse home???

Well, let's hope this is the final leg in our stay here.  Last day of antibiotics is scheduled for Monday.  Can't wait to hear our plan.  Thanks for all the prayers and words of encouragement today!

XOXO

Tuesday, May 17, 2011

Day 71

Well, I have not posted lately because from time to time Lauren would get a bit too sleepy for me, then be great.  So, I was afraid to report great news and then something be wrong again.  Silly, but true.

True to my instincts Lauren's sleepiness got heavier and her head circumference increased too much to be comfortable.  But to top it off she threw up last night, so I knew immediately something wasn't right with the shunt.  After x-rays, blood work and ultra sounds it was determined that her shunt isn't draining properly because the tip of the catheter in her heart is in a bit too far. 
With a VA shunt they want the tip to drain  into the right atrium, which is an area of low pressure.  However right now it is draining into a ventricle in the aorta that is pumping into the lungs, which is an area of high pressure.  So a little physics lesson-it won't work here...  

Tomorrow morning Lauren will go into surgery to have the catheter shortened.  They will not have to go into brain end of shunt, just working with the veins and/or arteries.   A surgeon that specializes with these arteries will work alongside Dr. Tulipan the neuro surgeon.

Our final day of antibiotics was scheduled for Monday, however they usually like 1 week of post op antibiotics, so it looks like next Wednesday should be her final day of the stuff.  I am really hoping for a discharge shortly after that, but we all know that we have to take it one day at a time.  Patience...

Thanks for the prayers!!!!

I'll keep you all posted on her progress.

LOVE from Lauren and Me;)

Wednesday, May 11, 2011



Moving Forward

Lauren has had some really fabulous days lately.  It pleases me to no end to see her so happy and alert.  She is even cracking a small smile every now and then.  She is working on her physical and occupational therapies still.

Of course, from the past I get nervous about thinking this time it really is working, but will run into problems any day... But I have to remain strong in my faith, hand over my nervousness to the Lord, and believe that it really is going to take and we will get out of here at the end of our antibiotic cycle.  If only easier done than said!  

Point is, Lauren is adorable and wonderful and I am enjoying her soooo much! 

Friday, May 6, 2011

Friday May 6th





Well, little Miss Lauren had a fabulous day.  She was up and alert and cute as pie, I could just eat her up!  She ate well too.  

Yesterday neuro tapped her shunt and injected a blood thinner into her shunt to help with swelling adn drainages.  Neuro came by again today to check her fontanel for pressure and found it to still be a little full, so they gave her another dose of the thinner in her shunt.  The ex-shunt site swelling has gone down quite a bit, but still not completely.  So, she still wears those silly net hats!  

Yesterday Erica came and spoiled me.  It was awesome cause she got to hold lauren for the first time!


Thanks Adrianna for the visit, it was great catching up and you got to get your baby fix snuggling!


Wednesday, May 4, 2011

Wednesday Recovery

Lauren is recovering very well!  Sleeping a lot, but well managed.  She is on a plan for 3 weeks of antibiotics here...

Tuesday, May 3, 2011

Surgery Update

Well, we made it back to the room from surgery.   Lauren is sleeping well and is on pain medication to keep her calm.

They did in fact have to change her shunt from a VP to a VA (which flows in to the right atrium of the heart).  They sent off the catheter tube that was in her abdomen for cultures along with spinal fluid.  We had a little bit of a scare when they did post op x-ray and thought it was in wrong place, thinking we'd have to do surgery again, but thirty minutes later the surgical team said that it was perfectly fine.  The tip of the catheter was in a little further, but not in any way wrong or a problem. 

Infectious disease (ID) is back on her case.  they will look at cultures (24-48 hours) to see if they can get a specific germ to grow or find out more information.  Typically, from what I have understood, is that if a shunt malfunctions it's because of a blockage, cyst, or infection.  Since she didn't have a cyst or blockage and it was a fluid build up, they are going to assume it was an infection and treat it as one.

With this in mind they will have to treat Lauren with another heavy dose and length of antibiotics at the hospital.  So, it could be 3-4 weeks longer for treatment.  

Frustrating, yes.  Emotionally exhausted, without a doubt.  But, I have to remind myself that there will be a day that we do get home and move forward.  I am so proud at Lauren's resilience and strength.  Thank you all for the emotional and spiritual support, especially in the last 48 hours.

Monday, May 2, 2011

Shunt Update

 OK, so the good news is that SO FAR it doesn't appear to be a shunt infection.  We are guessing this at this point upon her blood work with her white blood cell count and CRP (inflammation) numbers and that she hasn't had a fever.  To be on the safe side neuro just came by and tapped her shunt to get some spinal fluid to test for infection.  This takes a few hours to get results.

When he tapped her shunt he was able to determine that her shunt in the brain is not blocked and is working well. What they do know right now according to her images, is that the catheter in her abdomen (where the fluid drains through from her shunt) is clogged with debris.  Now, they aren't 100% sure where the debris is from and if the fluid build up is CSF or from something else.  She has had her colostomy plus the three abdominal shunt insertions, so there has been a lot of activity inside her abdomen, so it may be too much for her body for the shunt to drain here. 

The shunt that Lauren has right now is a VP shunt.  the "V" is for the part that starts in her brain and the "P" for the part where it drains into her abdomen.  There are other areas that the shunt can safely drain to.  Right now Lauren is scheduled for surgery late tomorrow morning where neuro and pediatric surgery will investigate the problem in greater detail and fix her shunt.

More than likely, (not absolute) they will drain her shunt to a new area into her heart chamber to drain.  This is called a Ventriculo-Atrial (VA) Shunt - Type of shunt where the distal catheter tip lies in the right atrium of the heart. This allows the CSF (spinal fluid) to enter the bloodstream directly.  So, the actual shunt in her brain will remain, but a new catheter will be hooked up and placed to a new area.

Lauren's recovery should be pretty good.  Typically shunt revisions have a 24-48 hour recovery time with 48-72 hours of post surgery antibiotics.  I am not sure if they will treat her any differently, I'll find out much more tomorrow afternoon/evening probably.  

Now, this is all still up in the air, especially since we haven't received the results from her spinal fluid yet.  If this is infected, then we will have to go through the old external shunt process again....

Lauren has been doing OK.  She really is an easy going calm baby, but has cried a few times today.  I would imagine that she has a head ache from the extra pressure in her head (neuro by the way took some out to relieve the pressure).  She did just throw up all over her mommy (good thing I had an extra shirt and soap in my bag).  Each time her shunt acts up she gets sick, so this is a normal reaction.  The good news is that she is able to rest well. 

This has most definitely been a very trying and emotional night and day for us, but we are moving forward with optimism and trust that God has Lauren wrapped up in his palm to get her healed and recovered as soon as possible so she can go home to her family.  I feel devastated, but feel even more so for my two big girls at home that were extremely ecstatic about Lauren coming home, and who after their daddy told them she was going to have to stay longer, didn't believe him and went to school completely convinced that he was trying to trick them, even after insisting he wasn't.  So, I just pray that they take her news good and have patience with all of this. 

I will most definitely keep the blog updated with information as I receive it. Thanks for the outpouring of prayers, we gladly except them:)

PS Happy 8 weeks to Lauren!!!

Sunday, May 1, 2011

Patiently Waiting.....an update

Amanda asked that I write you all to give you an update on Lauren's journey home.  


This evening as Amanda was changing her diaper, she noticed a bulge on Lauren's belly.  It looks as if the shunt track in her abdomen is very swollen.  They are waiting for the neuro to arrive to determine the cause of the problems and of course the prognosis.  


Unfortunately its our thought that Lauren and Amanda will not be coming home tomorrow as hoped.  I can only imagine that for every minute of hope that Amanda had for this day to be tomorrow, she is now having a moment of anxiousness, sadness, frustration....


I have been so amazed at the grace and courage that Amanda has shown throughout these past weeks since Lauren's arrival and the months before.  I'm humbled as a Mother to see the fortitude she has shown -- the patience and unconditional love.  Remarkable doesn't come close.  Determined isn't the word either.  But Lauren surely has inherited these traits.  She is one very lucky little girl to have Amanda as her Mommy.


I hope that you will join me in praying for God's healing hand to relieve Lauren's ailments and help her to recover so that she and Amanda can continue on their journey home.


And dearest Amanda - my prayers for you tonight:
Mark 12:30  Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength. 
Isaiah 41:10  So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

With love and blessings,
Christine


Holding our breath

OK, so far, so good.  We are still being discharged tomorrow!  We cannot wait to bring Lauren home to her family where she belongs.  It has been a long, tiring journey for me, but absolutely nothing compared to what Lauren went through.  What makes it OK, is that Lauren won't remember any of it!  She is a true champ of champs and I will always know her to be my fighter. 

I feel so incredibly blessed to bring a beautiful daughter home, to introduce her to the many family and friends that have already touched our lives with their generosity and thoughtfulness.  I am constantly amazed at how giving and prayerful people are in such times.  Our family truly appreciates everything from the bottom of our hearts.

I'll be sure to keep everyone posted on Lauren's journey as it will continue in different ways.  Clinics, therapy, and surgeries.  She has her first Spina Bifida clinic next Monday-one of many.  She will also have appointments with surgery team regarding her next surgery to make her bottom...

Thanks again and I'll be sure to post some pictures of her trip home!!!