Thursday, March 31, 2011

More Tests/More Prayers for Miss Selah

Selah saw one of the neurosurgeons in the group Thursday afternoon.  Her appointment was scheduled for 1:45PM, but the neurosurgeon had an emergency surgery, so he didn't get to see Selah until 4:30PM.  After thoroughly examining her, he decided that it would be a good idea to do a CT scan of Selah's head to take a look at the shunt, brain, and ventricles.  He also ordered a sonogram of Selah's abdomen.  Unfortunately, by the time the neurosurgeon ordered the tests, the radiology center was closed, so we have to go back tomorrow (Friday) at Noon to get both of these tests done on Selah. 

Selah must fast for 3 hours prior to the sonogram of her abdomen, but I think she'll be just fine.  She's fasted for 10 hours before, so that makes it feel like 3 hours will be a cinch!

For those who are unfamiliar with VP shunts (like I was!), the shunt is placed in a ventricle in the brain, and it has , which drains excess CSF (cerebral spinal fluid) into the abdominal cavity (peritoneal cavity), where it is reabsorbed into the body.  (A simple explanation of hydrocephalus is the presence of an excessive amount of CSF in the ventricles of the brain, and if not continuously drained, it will make the head swell and cause all sorts of problems.)  The VP (ventriculoperitoneal) shunt runs from the brain, outside the skull, and then the tubing is tunneled down under the skin, along the neck and chest all the way down to the abdominal cavity.  In infants, they put several feet of shunt tubing so that as the child grows, the tubing will unwind and grow with the child so that they don't have to replace the shunt each time the child grows significantly. 

Some of the possibilities with stomach pain after a VP shunt is placed include scar tissue, infection, cysts, discomfort from the CSF fluid draining into the abdomen, discomfort from the shunt tubing in the abdominal cavity, and there's also a possibility that the shunt tubing can wrap around an organ, such as the liver, and cause extreme pain.

Several people left comments regarding constipation, but this is not pain due to constipation.  We have Selah on Miralax, which has kept her regular in her bowel movements.  This pain is different, but the good news is that Selah has had a really good, calm last 24 hours.  (Ever since I posted the prayer request regarding Selah's tummy issues, things have been good!!!  Thank you, Jesus!!!)  Wednesday night, Selah only woke once at 3AM, and then she went back to sleep after I patted her for a few minutes.  When I woke Thursday morning, I was REJOICING that I had gotten almost 8 hours of sleep!!!  HALLELUJAH!!!  Oh, it feels just delightful to have a full night's rest, and it makes my heart smile to see Selah not having these pains.  I am so grateful for your prayers, and sooooooo thrilled that God gifted us with a good chunk of peaceful rest and 24 hours of pain-free time! 

I pray God healed whatever was causing Selah's tummy issues, but if there's still something going on, I pray that the CT scan and sonogram will reveal any possible issues.  Thank you for joining me in lifting Selah up to our Father.  I'm so grateful for all of you.  I really am.  There's nothing more powerful than prayer, and I feel so very blessed to have an army of prayer warriors always standing in the gap for our family.  Thank you from the depths of our hearts.

PS  Don't forget about the GIVEAWAY!  If you want a chance to win a free book, be sure to leave your comment on THIS POST by 11:59PM Friday, April 1!

Wednesday, March 30, 2011

Selah's Tummy Issues

If any of you out there have any experience with VP shunts, please let me know if you've ever experienced abdominal pain with a VP shunt. 

Poor Selah has been having horrible stomach pain, to the point of not being able to sleep, day or night.  She and I are both exhausted, and I hate to see my little one in pain.  I kept thinking her pain was due to her brain surgeries, incisions, adjustments, etc., but now that it's been a full week since her last surgery, I'm beginning to realize that it's not the incisions that are hurting her. 

Selah has been exhibiting several signs of severe abdominal pain, and every time I put her to sleep, she wakes within minutes, wrenching in pain, pulling her knees up toward her belly, wiggling and squirming and arching her back, screaming with big crocodile tears.  This is not normal for Selah at all.

I called the neurosurgeon's office a few times today to try to discuss the issues with a doctor or nurse.  I finally talked to a clinical nurse at 5PM, and she set up an appointment for Selah to be examined in their office by a neurosurgeon tomorrow (March 31) at 1:45PM.    Please pray that the neurosurgeon will have compassion, wisdom, and will order whatever tests would help determine the cause of Selah's pain.  I would also love to get her quick-acquisition MRI done tomorrow as well (it's currently scheduled for April 5), but I'm not sure if that will be possible.  I'd just like to have the doctor take an "inside look" at everything so that I can feel better about how things are working, and Selah can hopefully get relief from her horrible pains.

Before Selah was hospitalized 17 days ago, she was a HAPPY girl.  She smiled all of the time, was content, satisfied, joyful, and she slept very well.  Now Selah is fussy most of the time, and she is not sleeping AT ALL.  Not even at night.  She is continually waking up in pain, every 3-5 minutes.  It's awful.  Poor baby girl.  I know that something is not right, given the difference in her personality and sleep patterns, and since Selah cannot tell us what hurts, I must advocate for her and try to get her some answers and relief.

Please pray for Selah's tummy to not hurt, for her doctor's appointment to be productive, and for some much needed sleep.  Thank you!

Tuesday, March 29, 2011


Remember the post a few weeks ago, Realistic Expectations, that had a link to a free download/awesome resource for adoptive families?  Well, the articles found in that download is from an amazing book called Adoption Parenting: Creating a Toolbox, Building Connections, which has TONS (520 pages!) of helpful info for adoptive families.  The fun surprise for today is that the publisher of this book contacted me after a lot of you visited her site and downloaded the free resource a few weeks ago, and she's offering 3 FREE BOOKS as a giveaway to my sweet readers! 

Adoption Parenting may be purchased on Amazon (click HERE) or directly through the publisher (click HERE) for about $30. 

If you'd like a chance to WIN a FREE copy of this acclaimed book, just leave a comment here (on this post) that explains why you'd like to win a copy of this book.  That's it.  A chance to win a $30 book, just for leaving a comment!  (Winners will be drawn at random, not based upon quality of your comment. :-)  Thank you, Carrie Kitze, for your generosity!!!

You have until the end of this month to leave your comment, and your comment MUST be left on this post.  (Please leave only one comment per person.)  Giveaway will end at 11:59PM March 31, and the winner will be announced on April Fool's Day (no fooling!).
Adoption Parenting: Creating a Toolbox, Building Connections
Here's what the publisher has to say about this book/giveaway:

If you have recently downloaded the ebook from EMK Press called Realistic Expectations, you might have discovered that many of the articles contained in that little gem were originally published in a book called Adoption Parenting: Creating a Toolbox, Building Connections.  If you found that download to be helpful, you might want to read on...

Lorraine asked me to share a bit of how the Adoption Parenting book came to be...

My first daughter came to me at ten months, she had a ten month head start on being a child and I was in the hole ten months on the parent thing.  I had read the "What to Expect" books (actually on the long flight to meet her, nothing like planning ahead!) but they left me confused and wanting more information that pertained to our particular 
situation.  This was before the days of Hague and mandated training.  
Even with the training, nothing prepares you for the moment the pages of advice turn into an actual living breathing (sometimes screaming) child.

What do you do to help a child who had seven transitions in care before she came home?
How do you help an attachment challenged child learn who to love?
Are there strategies to get your child to sleep?

My oldest daughter was adopted internationally, and she spent a lot of time moving around in her short life before joining our family.  My pediatrician was somewhat helpful, but she really didn't have that much experience with internationally adopted children and attachment issues.  Our social worker was nice enough, but I didn't feel that comfortable sharing with her or with her practical understanding of our situation.  My mother in law attempted to be helpful when she suggested that we were spoiling our child by not letting her cry herself to sleep (over time we were able to do a bit of education on that front!)  The best understanding I found was a small group of parents on the internet.  We all had questions, some had answers and we were parenting as best we could without a map.  We shared, we chronicled what worked and what didn't, we found those who had gone before us and asked questions, we learned our unique children, and we slogged together like that proverbial virtual village that raises a child.

No book existed that offered practical parenting advice for a child who came from a not so optimal background that was easy to read and understand.  I am a communicator by profession, and now a book publisher so I thought we needed to create such a resource.  Adoption
Parenting: Creating a Toolbox, Building Connections took about 18 months to craft and we married wisdom from professional doctors, therapists, and social workers with those of real parents...just like you.  Over 110 folks contributed various sorts of wisdom on a practical variety of topics.  We also started a yahoogroup that continues the discussion on a topic driven basis.

There is not one "this is the way to do this" in this book, rather it is a number of ways of looking at similar situations.  It's practical, helpful and even has an index!  It's the book I needed to have and for those of you win it, I hope you like it.  It was and continues to be a labor of love to help each adoptive family, regardless of how they came to be, be the very best they can for the children who come to them.  That's my mission and I love hearing from the families who have benefited from this wonderful village of sharing of information.

Carrie Kitze
EMK Press

Monday, March 28, 2011

Monday's Meditation: A Boss Your Heart Message

Thank you, D'Lane Moore, for today's devo!

Look Up! 
by D'Lane Moore

Bath time around our house is a lot of fun.  Our daughter will turn 2 this summer and she loves to sing, dance, splash, read, count, and draw in the bath tub.  I think it is by far her favorite part of the bed time routine.  Her bath time ends with the actual bathing, including washing her hair.  When she gets her hair rinsed I tell her to look up and then I gently put my hand under her chin so that it is actually difficult to look anywhere but up.  I didn’t think much about this simple gesture until one day when I was rocking my little one before her nap.

One day as we were winding down before nap time my little one told me to look up and she put her hand under my chin and helped me look up.  I had to laugh!  I knew exactly where she had learned this- the bath tub.  Now any member of our family at any time may say, “Look up!” and it is always accompanied by a helping hand. 

This funny little game we play has got me thinking lately about who it is in my life that helps me look up and keep my eyes focused on Christ.  I know I need to look up and keep my eyes focused on Christ, because it is only then that I can truly boss my heart and experience Christ in my life, but sometimes, honestly, a lot of times, I need help looking up.  I need people who are going to put their little hand under my chin and actually make it difficult to look anywhere else, not literally, of course, but figuratively in my spiritual life. 

There are so many people who help me look up that I know I could never think of them all, but a few come to mind.  My pastor and other Bible teachers help me look up by encouraging me to dig into God’s word.  My husband helps me look up when he leads our family in prayer.  My close BFFs help me look up by being women of God who share with me how they boss their hearts.  And the Patterson family helps me look up as they continue to trust and obey God and invites us to pursue Him too.

I hope you have people in your life who help you look up and see Christ and all He has for you.  There is a verse in Matthew that is part of an amazing story about a mountain top experience Jesus had with some of his closest disciples.  The verse simply reads, “When they looked up, they saw no one except Jesus.”  Matthew 17:8.  It is my prayer that when you set out to boss your heart and seek that which God has for you that you will see no one except Jesus.  He is the way, the truth, and the life.

Dear Jesus,

Give us people in our lives who help us, yes at times even force us, to look up and see you, no one else except you.  Help us boss our heart towards you, dear Lord.


Friday, March 25, 2011

Prayers Needed for Kirrill

Please click  HERE to read a sad, sad story of a little boy with Down Syndrome in Eastern Europe whose adoption was rejected by the judge simply because he has Down Syndrome.  The judge said little Kirrill would be better off in an institution than with a competent American family.  The adoptive family is appealing the decision to the Supreme Court in Russia.  Please pray that Kirrill would be granted LIFE and be given the blessing of a forever family.  Being denied a family because a child has Down Syndrome is simply not OK.  This poor boy, this poor family.  So, so sad.

Our God is bigger than this.  He promises not to leave us as orphans.  Please pray that God will move mountains to get Kirrill home, and that the other families who are also trying to adopt from this same region would be approved.  Not one child with Down Syndrome has EVER been allowed to be adopted out of this region in Russia.  If the Supreme Court would approve Kirrill's adoption, this would pave the way to rescue many other special needs orphans in this same region.

Pray for Kirrill to come home.  Pray for the hearts of his family members here in the US.  Pray for the Supreme Court in Russia to have their eyes opened, to have mercy, to be educated with regards to Down Syndrome.  Lord Jesus, rescue this precious boy!!!

Welcome Home Selah!

The flowers are blooming all over our entry arbor, a sweet and fragrant welcome home to Miss Selah! Thank you, God!

Home Sweet Home

Hallelujah, we're home!!! Many shouts of praise to our Jehovah Rapha for protecting Selah and bringing her home so quickly after her shunt replacement. Selah was discharged from the hospital Thursday evening, and as we drove out of the parking lot, Matt was praising Jesus for the gift of driving away from the hospital with our baby girl in our truck with us and not in a hearse. I know that sounds just awful, but it's something we can't help but feel/think/say since we, unfortunately, know what it feels like to drive away from the hospital with our beloved Chrissie in a hearse instead of in her car seat with us. Oh what a glorious evening to have our entire family reunited after Selah's 12 day hospital stay.

We're sooooooo happy to be home!!! Selah was excited to see all of her siblings. She got bored with just Mommy around at the hospital!

It's 12:1530am now and everyone in the house is asleep. I'm getting ready for bed, and I'm just giddy about having a dark, quiet room with a comfy mattress and fluffy bedding!!! And the best part is that no one will be coming in Selah's room to wake her up, check her vitals, give IV meds, weigh her, or shine the light in her eyes for neuro checks. I'm very much looking forward to peaceful sleep tonight!

Goodnight y'all and thanks for praying! Be sure to lift up praises to our Abba Father! Woohoo! Thank you, Jesus!

Sent from Lorraine's iPhone

Wednesday, March 23, 2011

Sweet Selah

Selah and I both crashed this afternoon while Daddy stood watch over baby. Whew, what a glorious blessing to get some rest without worrying about a thing!!!

Selah drank 12 ounces of formula around 6:30pm, which is all she's had the entire day. She's been conked out most all afternoon and evening, but we woke her for meds this evening and she was STARVING. She gulped down all 12 ounces in about 10 minutes, including burp time!!! She wanted more but we were afraid she'd get sick after so much anesthesia and no food all day.

Oh how delightful it feels to have Selah in our arms again. The only tube attached to her body is her IV. Yay! We're allowed to hold her and love on her and burp her on our shoulder and rock her! We take these things for granted until we're not able to do them, ao I'm praising God for all our blessings tonight. Our cup is overflowing!

Selah will have to have neuro and vital checks every 4 hours, plus be woken for meds each time they are due. her IV is still working, so I hope this one will hold up until she's released. It took the anesthesiology team 2 tries ti get an IV, while Selah was already sleeping from the gas mask. I'm just so thrilled that she's doing well and hopefully we'll get to go home SOON!!!

Pray for good sleep for Selah and Mommy, as well as no complications, no infections, no issues. Pray that the shunt will work perfectly at the current setting, but if it needs to be adjusted that we would catch it and get it fine-tuned before we go home.

Thank you sweet and faithful prayer warriors!

Glory to Jehovah Rapha

Dr. George didn't run into any problems during surgery. He's happy with the way things turned out, and if things go well, we should be able to go home Friday!!! All glory and praises to our healing God for this huge success!

Selah is still sleeping. I think the pain meds and anesthesia really wore her out! We were discharged from IMC and placed in the neuro unit, which is less critical, so more shouts of praise to our Father who is mighty and able to do all things. Oh how we praise Him for this successful surgery. Hallelujah!

Thanks so much for praying!

Pic below: Look how many blessings we have! This is 10 days worth of living in the hospital. Thank you all who generously brought treats and care packages. We love you!!!

Selah's Shunt, Warning: photo

Don't look if you don't like stitches!

Selah and Mommy in Recovery

Holding Selah Now

I am in recovery holding our sleeping princess now. She has lots of stitches in her skull. Ouch. But she's peaceful and on good pain meds right now. Thank you Jehovah Rapha!!!

Sent from Lorraine's iPhone

Selah's out of surgery!

Dr. George is done and said it went well, praise God!!! He removed the old shunt and installed a new programmable shunt. They're finishing up now and we'll be able to see our Princess Selah soon! Glory to God.

Sent from Lorraine's iPhone

Selah Is Happily Awaiting Surgery!

Tuesday, March 22, 2011

Selah's Having Surgery Wednesday at 11AM!

Praise God, I got to speak with Dr. George this evening!!!  He will be doing Selah's shunt replacement tomorrow, Wednesday, March 23, at 11AM.  He felt that the remaining hematoma (collection of blood between the brain and skull) is small enough that it should reabsorb into the brain and drain itself.  There doesn't appear to be any new bleeding, according to the MRI, so Dr. George believes he'll be able to focus solely on shunt replacement in this surgery.  Selah's ventricles appear to be of normal size now, so he feels her brain is ready for the shunt replacement.  Dr. George will completely remove the old shunt, which might be tricky because it's intertwined in places of the brain where it shouldn't be, but I'm praying our Jehovah Rapha will guide his hands and prepare the path for success for Dr. George.  Once the old shunt and tubing is removed, Dr. George will place a new programmable shunt into one of Selah's ventricles and run the drainage tube down into Selah's abdomen, where it was before, so that it will drain excess fluid into her tummy, where it will be reabsorbed into her body regularly.  The programmable shunt will allow him to fine-tune the settings so that Selah's brain isn't over drained or under drained.  Praise Him for this technology and for allowing Dr. George to do this surgery.

Selah didn't sleep well last night either (2nd night in a row of very little sleep), but she had a GREAT day today!  My sister came to stay with Selah for a few hours while I went to the Ronald McDonald House to do a little laundry.  Then I took a long walk over to a shopping center a few blocks down from the hospital.  Shortly after I had entered the first store, my sister called to tell me that Dr. George had stopped by the room to visit with me.  AGGGHHHHHH!!!  I rarely leave Selah, and the doctor I've been longing to visit with just happened to stop by while I was GONE!  My sister asked him to come back, and he said he would, so I abandoned my shopping cart and sprinted back (in flip-flops) to the hospital.  I got back around 1:15PM (I think) only to find that Dr. George didn't make it back by here until around 6PM.  But that's OK, at least I got to talk to him!!!

My sister brought a portable DVD player to put in Selah's bed to see if it would help occupy her during the times that she's awake.  (I had downloaded some Baby Einstein apps onto my iPhone, which Selah LOVED, but I had to stand cribside and hold the phone for hours while Selah soaked in the genius teachings!)  So, this afternoon, I plugged in the DVD player and Selah excitedly watched an Elmo DVD over and over and over again!!!  Who would have ever thought that I'd be excited about my 5-month-old watching DVD's?!?!  Well, let me tell you, after spending 9 days of standing next to Selah's hospital crib for 14+ hours/day, trying to entertain an active baby while keeping her on her back, not rolling over, holding her head still, without picking her up, well, let's just say the DVD system was a godsend!!!!!!  I got to sit down for 3 hours today, and I was SOOOOOOOOO excited!!!!!!  I had to fight to stay awake during my 3 hour sitting spell because I didn't want to miss Dr. George, but it was heavenly to sit down and rest my throbbing feet. 

I fell apart last night and sobbed at 12:15AM.  I had worked and worked and worked to try to get Selah to sleep, and finally at midnight, she was out.  Then a nurse came in at 12:15AM to start some IV fluids, which woke Selah, and then she didn't go back to sleep.  I was SO exhausted from not sleeping the night before that I fell apart.  It felt good to sob though, and shortly thereafter, I started bossing my heart and asking God to sync it with His.

The blessings were abundantly popping into my mind, so I asked God to help me praise Him in this storm instead of pitying my lack of sleep.  Here are just a few of the blessings that I am praising God for:  Selah is alive and thriving.  I am able to stay by her side 24/7.  I have an awesome husband who works hard so that I can stay home with my children and be by my children's side any time they are in the hospital.  All of my other kiddos at home are amazing, they're holding up well without Mommy being home, plus they're doing a a FANTABULOUS job of keeping up with their chores, serving joyfully, and taking care of one another in a way that Jesus would be proud.  My friend and our school teacher, Stephanie, is going above and beyond to serve and help our family in ways that I'm not even fully aware of, such as driving our kids to various appointments and activities.  Stephanie's daughters, Samantha and Emily, were home for Spring Break and helped tremendously with our kiddos and the ranch.  Our family, friends and even strangers bring yummies/gifts to the hospital for us and constantly ask how they can help.  Friends have showered blessings upon our family by delivering dinners to our home every single night since Selah has been in the hospital.  My in-laws have picked up and delivered our Sam's Click-n-Pull order of the week...twice.  People around the world are praying for Selah and our family.  We have a large private hospital room.  I have an almost real bed (instead of a chair) to sleep in (a pull out couch cushion).  I have my pillows from home and my daughter's quilt to sleep with.  My hubby brought our large HEPA filter to the hospital room, which helps drown out the myriad of noises, door slams, voices, alarms, beeping, intercoms, announcements, etc.  I have a private full bath right here in the room.  The hospital and staff are wonderful, always asking if they can get us anything.  The hospital grounds are beautiful.  The cafeteria delivers meals to the room, and the food is pretty good.  The Ronald McDonald House has free laundry facilities.  I have more chocolate than I can consume!  I am healthy and well, as are my husband and children.  Selah is a delight, a blessing of the Lord, and I'm honored to have been chosen to be her mom, and I wouldn't choose to be anywhere else but by her side as long as she's in the hospital. 

The list of blessings is infinitely long, but I'm exhausted, so I need to stop the list and get ready for bed now.  Selah won't be able to have any formula after midnight, so please pray that she has a good night with peaceful sleep.  It'll be a challenge to keep her happy in the morning without being able to rock and bounce her, so extra prayers in that department would be greatly appreciated.  And, of course, HUGE prayers for Selah's brain surgery!!!  Oh how delightful it would be if there were no complications and we were able to go home Friday!!!  (Dr. George said we should be able to go home Friday if there aren't any issues!!!)  PTL!  Just praying Selah does well and recovers quickly and fully, without complications.

Thank you so much for praying!
Can you say YUMMY?!?
My friend Lisa brought this chocolate "shot" from La Madeleine's bakery.  Even Selah was excited about it!!!

My home away from home.  Isn't it luxurious?  (Seriously, it really is for a hospital room!!!)

Send The Block Family!

Send The Block Family to Serve Orphans in Guatemala!

Click the video above to "meet" an amazing family.  This is the family that Mattie raised $4,000 for their Pass It Forward adoption fund.  Mattie read a story over a year ago of how The Block Family ate beans and rice for dinner for an entire month in order to save money so that they could give it to others and help orphans.  This family is the real deal.  They are all amazing.  They are selfless and generous, always supporting other families in their adoptions, advocating for orphans, praying without ceasing, loving the Lord with all their heart, soul, mind, and strength.

The Block Family NEEDS your financial support in order to go to Guatemala.  God has called them.  They have obeyed, joyfully, saying, "Here am I, send me."  Guatemala no longer allows their orphans to be adopted by US families.  The orphans NEED The Block Family to show them Jesus, to be His hands and feet to those who appear to be forgotten.  They are NOT forgotten.  God knows each and every orphan by name, He knows the number of hairs on their heads, and He wants them to know Him and His love in a tangible, real way every day.  That is why God's chosen to send The Block Family to Guatemala.  They will serve Him with honor and integrity, loving the least of these as He has done for each of us.  I am honored to come alongside The Block Family to share their story, with prayers and belief that God will lift up an army of warriors who will support them financially and prayerfully.

Tax deductible giving can be made at:
Commission To Every Nation
Todd and Amy Block
P.O. Box 291307
Kerrville, TX 78029-1307

Online giving here

Thank you so much for your support!!

Monday, March 21, 2011

No Surgery Tuesday

Selah did GREAT during her MRI this evening.  Matt (my hubby) treated me to a pedicure (heavenly!) while he stayed with Selah for her MRI.  Everyone reported that Selah smiled and laughed during the quick-image MRI, which only took about 10 minutes.  This happy experience for Selah was a direct answer to prayer, as she has had 3 of these quick-image MRI's before, and she's screamed and screamed and fought and kicked and squirmed and thrashed with each one, which causes them to have to re-do the MRI's each time she moves.  Apparently Selah held still and smiled and seemed to "enjoy" her MRI experience!

Unfortunately, the neurosurgeons had already gone home for the day by the time Selah was able to get her MRI done.  Selah didn't have a pre-scheduled MRI appointment, so she was at the end of the list, which put her in the machine around 5:30PM, too late for the specialists to meet, review, discuss, and make a plan.

This means Selah will NOT have surgery tomorrow (Tuesday).

Dr. Lee (the neurosurgeon who placed Selah's shunt when she was a week old) is booked until Thursday, so he said Thursday would be the soonest that he could do surgery, unless something turns out to be an emergency.

Dr. George (the neurosurgeon who did this current surgery) has been gone for Spring Break, and they're not sure yet what his week looks like.

Meanwhile, we are sitting in a hospital room being interrupted every 15 minutes by someone who doesn't understand how hard it is to get a baby back to sleep when woken every 15 minutes!!!!!!  AAGGHHHHH!!!

We don't even know the plan.  We don't know if Selah will have to have another catheter placed to drain the other hematoma (assuming she will), and we don't know if/when they'll be able to place a new VP shunt.  Dr. Lee said it doesn't matter how big Selah's ventricles are, that he can place the shunt in an area where it will work, but Dr. George disagreed and wants it in a ventricle (where it should be) so that Selah will have a better shot at long-term success with the new shunt. 

Dr. Lee said today that it really doesn't matter that much because Selah didn't really even have a brain when she was born, so he just placed the shunt into the massive amount of fluid (3 pounds) in her skull.  Once that fluid drained, the brain had space to grow around the shunt that was just floating in a sea of fluid, which then put the shunt in all kinds of crazy places within her brain, where it shouldn't be.  That's why Dr. George wants to do a total shunt replacement, and he really wants to get it inserted properly, not just as a make-shift shunt.

Meanwhile, we wait.  And wait.  And wait.  I so hope that tomorrow we'll have a plan.  I pray Dr. George will be back, and that he'll come by to visit.  (We haven't seen him since the surgery last Monday, March 14.)  I know God has a perfect plan in this, I just have to ask Him to help me wait as my patience wears thin due to my sleep-deprived state.  I am really missing my children at home, missing my real bed, missing my room where it's quiet and there are few interruptions and the lights go out at night and there are no alarms or cords or wires or middle of the night medicines or IV's or sterile cribs where a baby lies all day and night when she would be held and cuddled and played with for hours on end at home.  Missing just picking up my baby girl and loving on her.  Missing rocking her to sleep.  Missing everything about my "normal" life, as crazy and busy as it usually is, it's what I LOVE.

Longing to be home.

Waiting as patiently as possible for God's perfect plan.

Trusting in His sovereignty, His goodness, His faithfulness.

Thank you for praying.

Updates/Prayer Requests: Baby Mia, Carrington, Selah

Pray for Baby Mia:  Our newest niece, 5-week-old Mia Ruth, is hospitalized with possible meningitis.  Please pray for her full and rapid recovery.

Pray for Carrington:  You may follow updates of 11 pound, three-year-old Carrington, who just came home from Eastern Europe and is fighting for her life in a Texas hospital, by clicking HERE.

The link on my original post about why I advocate for special needs orphans was incorrect.  Please click HERE to read more about the lives of special needs orphans and why it's imperative that we step up to the plate to rescue these precious children.  Thanks, Lu, for your compassionate post about why you do what you do, and why so many of us are fighting and advocating and fundraising around-the-clock for orphans.  Many times, their lives are at stake.  Seriously.

Carrington's first day with her adoptive family in Eastern Europe

Carrington's 4th Day in Texas, at Cook Children's Hospital in Fort Worth
Carrington is on the path to healing, brought via Jehovah Rapha, in the form of an earthly family who treasures this little jewel of His, who used to be viewed as trash in her country due to her having Down Syndrome.

Pray for Selah:  Selah is awaiting her quick-image MRI, which won't require sedation, although she's never held still, even when they strap her into a papoose and strap her head down.  The quick-image MRI's are supposed to take about 10 minutes, but they usually have to re-do Selah's 2-3 times before they can get a good enough image.  Selah is STRONG and LOATHES being restrained, bless her heart.

We still don't know the plan for Selah's shunt and hematoma, as the plan cannot be formed without the results of the MRI.  I hope they're able to get the MRI done before the team of neurosurgeons retire for the day!!!  Selah may or may not be having another brain surgery tomorrow.  We'd like to prepare our hearts for her surgery if they are able to move forward at this time, but for now we wait as patiently as we're able with the Lord's provision.

Selah has been fussy since they removed the catheter from her skull/hematoma.  We're not sure what the problem is, so I'd really  like the MRI done so we'll know if there's internal bleeding, causing another hematoma to form, or if there's something else going on.  Selah is usually happy and bubbly and greets everyone (even IV teams!) with a smile (until the needle goes in).  She's not been herself since about 4PM yesterday.  She didn't sleep well last night either.  She stayed up until 2:30AM, then woke back up at 4AM and stayed up until 5:30AM.  When I finally got her back to sleep, she was so restless, so I patted her much of the time to try to comfort her.  We're operating on not much sleep today, which might be why she's crankier than usual, but it's so hard to tell with a 5-month-old who has tubes and cords all over her body.

I've gotta run because Selah is awake now and fussy.

Pray for Orphans, all 147 Million (or more) of them!  They're reliant upon us!!!

Monday's Meditation: A Boss Your Heart Message

Thank you, Kirsten Walkup, for today's message.

By Kisten Walkup
Like many of you, last week I found myself glued to my TV watching the disaster in Japan unfold. The scale and scope of the damage is really beyond comprehension. First, one of the biggest earthquakes recorded hit the island, then an epic tsunami raced inland laying waste to all in its path, finally a nuclear disaster the scale of which has not been witnessed in at least twenty years threatened to not only increase the death count, but also dramatically hinder the Japanese from being able to recover from this catastrophe in economical terms. As I watched the videos of people being swept away to certain death by the monster wave, or footage of houses and buildings crumble with inhabitants trapped inside them, I couldn’t help but wonder, why? Much like the great Asian tsunami of 2004 which sent a quarter of a million souls into eternity, this really bothered me.
I have a pretty analytical mind. I understand that the earth is a moving, ever-changing entity that is capable of rendering awe-inspiring beauty as well as gut-wrenching violence. The earth is in a constant state of destruction and renewal. At the unfathomable depths of the ocean floor, a place most consider remote and placid, truly vicious movements of the earth’s tectonic plates cause the earth to rise and fall resulting in the types of calamity that have hit Southeast Asia, Haiti, New Zealand, and now Japan. On a forensic level, I get it. This kind of thing happens. Time and pressure demands that the earth release her energy, sometimes with terrifying results. That’s physics. And because the most dangerous places on earth also happen to be some of the most beautiful, people have a nasty habit of placing themselves in harm’s way. But the part of me that knows I serve an Awesome God who cares very deeply about the affairs and events of humanity, wrestles with this stuff.
I know all of the correct theological answers as to why God allows human suffering. I understand that God does not often suspend natural law in order to nullify human suffering. We live in an orderly cause and effect universe and God does not lightly alter that order. In specific times and circumstance God has and does intervene. We have no way of knowing when God does intervene; we only know when he appears not to. The very fact that our relatively small planet hurls itself around a giant fireball of a star at over 1,000 mph at a precise angle of tilt without incident speaks to the fact that God does care about humanity. Knowing all of this great theological theory, however, does little to set my mind at ease when I see thousands of people die in a matter of minutes; or when I watch the news and hear about a child being harmed by the people who were supposed to care for them the most; or when I see a funeral procession carrying the flag-draped coffin of a fallen hero whose life was snuffed out far too soon. Sometimes I just put my head in my hands, and for all the things I have learned and been taught, I still find myself asking “why”?
Over the years I’ve come to terms with the fact that I’ll never be able to answer that question to my satisfaction. Not in this lifetime anyway. I look forward to the day when God lifts the mortal shroud that conceals understanding of such things from the grasps of my finite mind and fallible heart. Until that day, all I can do is set my mind and boss my heart into trusting God. When my mind fails to come up with adequate explanation and theology falls short of granting comfort to my troubled heart, I can still approach God’s throne and find peace and comfort at the feet of Jesus.
Isaiah 40: 29-31
Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Sunday, March 20, 2011

Urgent Prayer for Carrington

Please pray for 3-year-old Carrington, who weighs just 11 pounds. She was just adopted from Eastern Europe, where she had been discarded, but now she is fighting for her life in the USA.  Her body had already shut down in EE, in death mode, simply because she was a special needs orphan living in an area where her life was not valued; therefore, she was not cared for.

Click HERE to read why I advocate for God's people to answer His call of living out true religion by caring for orphans in their distress.  (James 1:27)

This post will also give you a better idea of why I use the word RESCUE often times when I am advocating for a special needs orphan.

Please pray for sweet little Carrington, as well as her family who loves her dearly.  Carrington's family blog is private right now, so you won't be able to follow their story, but I will keep you posted as I am updated.

Selah's Sunday Morning Report

Selah is doing well.  Her sodium levels are balanced out now, and her IV is still in and holding up, praise to our Father!!!  Since her hematoma catheter hasn't drained anything in 3 days (read THIS POST), the neurosurgeon's nurse practitioner is really hoping to pull the catheter from Selah's skull today in an effort to decrease brain infection possibilities.  She's going to try to get a CT scan done today, just to make sure that's the best plan, and then she'll pull the catheter bedside in our current room. 

The bedside procedure requires a little anesthesia via IV with Versed, to calm Selah's nerves and make her a little loopy so she won't exactly care that she's getting a tube ripped out of her brain/skull!!!  They'll also give topical anesthetic, as they'll have to stitch up the hole after they remove the catheter.  This will all be a sterile procedure, but done in our hospital room, so I'll most likely be kicked out of the room to reduce unnecessary germ exposure.

We greatly appreciate everyone's prayers.  We are being held up by our loving, faithful, sovereign Abba Father. 

Sleeping Selah

Outdoor eating area by cafeteria, complete with waterfall.

I don't know if you can read this, but it's the message inside of my Dove chocolate with caramel filling yesterday.  It says, "It's definitely a bubble bath day."  That's exactly how I felt yesterday with the IV excitement.  A very fitting message for the day.

Saturday, March 19, 2011


Praise God for answered prayers! Selah now has an IV!!! It took the anesthesiologist team 2 tries (actually 3 sticks, 2 in the same foot) and about 15 minutes to get an IV in Selah! All glory to God, and my utmost praise to Him for answering our prayers!!!

The nurse shared with me that Selah's sodium levels were dropping so low that it could potentially be life-threatening. She was a stressed nurse, but she worked quickly to get anesthesia to come give it a try since they have the highest success rate with hard sticks.

Now Selah will be able to receive fluids via IV to replace all that she's losing via the external drain of the shunt.

Soooooo relieved and sooooo grateful for this fierce army if prayer warriors.

PS I did leave the room. I had to go into another wing in order to not hear Selah's screams!!!

Sent from Lorraine's iPhone

Selah must have an IV

Please pray they'll be able to get an IV in Selah first try. Her sodium levels are dropping way too rapidly, putting her at risk of seizures. They're calling in a different team from the anesthesiology department to give it a try. I don't think I can stay in the room this time.

Sent from Lorraine's iPhone

Selah's Saturday Afternoon Update

The neurosurgeon on call stopped by this afternoon to let me know he had reviewed Selah's last CT scan (taken Wednesday morning).  It appears that Selah actually has 2 separate hematomas.  One drainage catheter was placed into what the neurosurgeon believed was ONE hematoma, expecting one catheter to drain the entire hematoma.  Upon further review of the last CT scan, and with the hematoma cather not draining any fluid the last 3 days, it appears that there are actually two separate hematomas inside Selah's skull, right next to each other, separated by a membrane. One is older than the other.  The newer hematoma appears to have already drained (that's where the catheter was placed), but the older hematoma is encapsulated and the catheter is not within that membrane, which means it won't be able to drain without a new catheter being inserted into the active hematoma.

The current plan is to repeat a CT scan on Monday morning for the team of neurosurgeons to review.  (Only one neurosurgeon is on call this weekend.)  They will come up with a plan.  More than likely, Selah will have surgery again on Tuesday to pull the existing catheter from her skull, and then drill a new hole into the area where the fluid-filled hematoma is, place a new catheter into it, and then let it slowly drain over a period of days at the hospital. 

If the brain ventricles are plump by Tuesday, the neurosurgeon should be able to do the shunt replacement at the same time, but if the ventricles are still collapsed, they will have to wait and do yet another brain surgery after the ventricles are larger in size. 

Selah still doesn't have an IV, so I'm praying she won't have any issues that would require an IV between now and Tuesday.  (They can insert an IV under anesthesia when they go in to do surgery.)  Selah's sodium is a little low on her labs, so she's having to drink basically just salt water.  YUCK.  If she had an IV, they'd just give her the necessary fluids via IV, but we're trying the oral route for now.  Selah does NOT like taking oral meds of any kind, really.  She often chokes on them, and she's known for sputtering the liquid back out and blowing raspberries with the medicines as well.  UGH!

Selah appears to be constipated again.  She didn't poop at all yesterday, and today her tummy has been in pain, still without any poop.  She's sleeping right now, so I'm really hoping she'll poop and not be in pain after she awakes. 

Selah has to get more blood work at 5PM.  They're doing pricks in the heels/fingers and squeezing the blood into viles since they can't get any blood via a vein.  She also has to drink the nasty salt water and take some other meds as well at that time.  Since she's peacefully sleeping now, in a really deep slumber, I don't expect her to be a very happy patient when 5PM hits. :-(

The oral antibiotics are upsetting Selah's tummy, too, but she really needs to continue taking those 4/x/day to help fight against infection in her brain due to the catheter  and hole in her skull.

Please pray for Selah's sodium, electrolytes, and all lab work to stay stable, for her comfort during the pin pricks/squeezing to gather blood for labs, for her constipation to be relieved, for her body to be pain-free, and for complete protection, healing, and restoration for her brain and hematomas.

Thank you!!!

Are You Listening? INSPIRATION!

I'm reposting this message because it accidentally was back-posted to March 10.  This is such an inspiring story, I don't want anyone to miss it!

This courageous, intelligent, sweet young lady, Taylor ("meet" here HERE), is such an amazing inspiration.  She has a testimony all of us need to read.  Taylor has hydrocephalus.  She's in her early 20's now, she speaks English, Spanish, and Arabic, and she's currently serving as a medical missionary.  She's been through more than any of us can even fathom, and instead of regretting her struggles and challenges, she is allowing God's glory to shine through her testimony.  Please read the Boss Your Heart message that Taylor wrote for me to post here (entitled "Are You Listening?"), and then go read Taylor's post about her call to return to Israel to serve Him and help heal broken hearts (literally).  To make a small world even smaller, Taylor worked with some of the medical team members in Kurdistan last summer who Dr. Porisch (Chrissie's cardiologist) also serves with, and she prayed for Chrissie throughout her battle!  Taylor knows God is calling her to return to Israel, she is walking in faith, despite her fears and struggles, and she is believing the $4100 in required travel fees/expenses will be provided through God's people who may not be able to serve in Israel, but can certainly help send Taylor to serve as His hands and feet.  Please consider helping Taylor get to Israel, and your prayers for her are most certainly appreciated!!!

Are You Listening?
by Taylor Nicole
I have always been aware of God's presence in my life (both of my parents were raised as Catholics, and I grew up hearing about Jesus), and officially dedicated my life to him in November of 2003. He has carried me through many very difficult times in my life.

I have spent most of my life in and out of hospitals. My intended birthday was November 9, but thanks to some medication issues for my mom, I was born four months premature, on July 23. I weighed 1 pound and 12 ounces at birth. At that stage, babies' lungs are not fully developed, and their skin is very thin, almost translucent. They run a high risk of having Cerebral Palsy (nervous system disorder that affects muscles and leaves them tight and weak), Hydrocephalus (buildup of fluid in the skull, the same condition that little Selah has!) and severe mental and physical handicaps. Nineteen years ago in 1991, medical science was nowhere near as good as it is now. I was given a 39% chance of survival. Needless to say, this was a challenging beginning to life. I was born with Hydrocephalus and mild CP, and spent 4 months in the NICU before I could come home.
(Hydrocephalus explanation:
(CP explanation:
  (A picture of me in the NICU.)

In my 19 years of living, I have had 15 surgeries. Most were for my CP (leg muscles) and hydrocephalus (shunt malfunctions and modifications), and there were also a few for strabismus (“lazy eye”) and mild scoliosis (curvature of the spine). And one, in November of 2004, was to remove a brain tumor. It was non-cancerous (a mass of tissue and cells), but its size and location would have caused problems and potentially been fatal if left untreated. Its removal affected the nerves and muscles, and left me with hand tremors and lack of coordination for months. I spent almost four months in physical therapy, re-training myself to hold a fork, tie my shoes, walk, and other important things. That was one of the worst and scariest times of my life.
Jeremiah 29:11 – “ ‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you; plans to give you hope and a future.’ ”
Well, God, thank you so much for letting me know that, since I have no idea what’s going on here. (And, quite frankly, am scared out of my mind.) At least SOMEONE here knows what’s going on! What a relief!
“What Faith Can Do”, by KUTLESS, was “Chrissie’s song.” It is also “my” song.
“I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise.”
What a wonderful promise of God’s faithfulness! If we just believe, have FAITH in our God, then He will heal our broken hearts and make us new, and will give us the strength to rise from even the most difficult of circumstances. He knows the plans that He has made for us, and He will never forsake us. God is good!
During that awful, scary time in November of 2004, one of my last few roommates (I was there for so long that I went through 4 or 5 different roommates!) was a girl who was 11 or 12 years old and was very, very sick. I was struggling myself at that point, dealing with a lot of challenges and some dark things, but as always, God carried me through. I remember that young girl's father looking at me with tears in his eyes and asking, “How do you do this? How are you used to this; how is it normal for you? What do you do?” I was able to share my story with them and tell them about my God and His faithfulness and love for me. We talked for at least a few hours that day, and when we finally stopped, they were greatly comforted.
That was the beginning. It was clear to me now: God had brought me through these challenges, mostly unscathed, so that I could minister to others with my success and my faith.
Isaiah 6:8 – “Then I heard the voice of the Lord saying, ‘Whom shall I send? Who will go for us?’ And I said, ‘Here I am, Lord. Send me!’”
In March 2007, I answered God’s call for the first time, stepping out in faith at the age of 16 to go on my very first mission trip. That year, I spent my spring break on a mission trip in Mexicali, Mexico, at a cinder-block church in one of the poorest neighborhoods in the city. We spent a week working alongside the people of that church, painting and repairing the building, and holding VBS and playing games with the children. At that time, I had only had one year of high-school Spanish, so my Spanish was limited to basic phrases like, “What’s your name?”, “Where’s the bathroom?”, and the handful of Christian phrases and children’s worship songs that our translators had taught us. That trip was a huge step of faith for me. I had never been out of the country before, never been in charge of teaching a VBS lesson on my own (especially one where I had to rely on a translator), and so many other things that were “firsts.”

Matthew 25:40 – “Jesus replied, ‘Truly, I tell you: Whatever you do for the least of these, you do for Me.’”
Little did I know that that one-week trip, just a little way over the US border, would be the beginning of my “Boss Your Heart” experience. Since that trip to Mexico in 2007, I have said “Yes” to God’s call to travel. My Spanish has improved, and I also have a fairly decent grasp of Arabic as well.
In April of 2010, God put me to the test. I speak Arabic, and I have a passion for the people and culture of the Middle East…. but I also know the history and conflict of that part of the world. And yet, one day in April, God spoke clearly to me. “My child, I want you to go.” He was calling me to work with Shevet Achim (Hebrew for “Brothers Dwelling Together”, taken from the Hebrew translation of Psalm 133), a Christian organization in Israel that brings children and teens from Iraq/Kurdistan, Palestine, and Gaza to hospitals in Israel for life-saving heart surgery. I wanted to go, but I was afraid. At first, I resisted. “Really, God? Israel? I hear You calling me, and I really do want to go…. but I think You may have made a mistake. Israel is too risky right now. Isn’t there somewhere else I can go; someone else You can send?”
But, of course, God knows better than we do! Again He spoke. “Go, My child. I am with you. I have brought you through all these things, and I will be with you again. Go and serve My people.”
I spent a month in Israel, working alongside Shevet Achim staff. While waiting before surgery and waiting to recover and go home after surgery, the children and their mothers stay in Shevet Achim's center in Jerusalem. We work and live alongside these families, getting to know them and sharing the love of Jesus as we pray for and with them, sing worship songs in Arabic and Kurdish, and support them through their child's surgery and recovery. During my four weeks in Jerusalem, I held babies from Gaza, made cookies with mothers from Kurdistan, visited the Wailing Wall (holiest site in Judaism) and Garden Tomb (site of Jesus’ crucifixion, burial, and resurrection) with a mother and daughter from Morocco, sang worship songs in English, Arabic, and Kurdish, and got to know the families and Shevet Achim staff. We laughed and rejoiced, cried and mourned, shared meals, took pictures, played games, danced in the streets of Jerusalem, and grew to love each other.
I “bossed my heart” during that month, summoning my courage and obeying God’s call to do things that I never thought I’d do. I saw and heard some very difficult things; some of the memories still haunt me. And yet, it was one of the best experiences of my life. I was able to share my story with these mothers and children, letting them know that God had brought me through so many things, and that He cares for them and will carry them through their trials as well.
So, here is my challenge to you.

God has intricately woven together His plans for our lives (Jeremiah 29:11), and if we have faith in Him, He will give us strength and carry us through even the most difficult of circumstances. Are you TRULY listening to God’s plan for your life?

He has called His people to care for the “least of these”, to minister to those around us. Are you ready? When God calls you, will you go? His calling for you may not involve traveling to the other side of the world. He may lead you to serve those people who are right next to you in your own city. Or, maybe you’ll be called to the jungles and mountains of South America or the deserts of the Middle East.
I was afraid at first. I’m not ashamed to admit it. Committing to follow God’s calling in your life is a very bold step to take. “But God, what if….?” “My child, I know the plans I have for you. Go!”
Go ahead. Take that step. Step out in faith and answer God’s call for your life. Follow Chrissie’s example of “bossing your heart” and summoning your courage.
I’m so glad that I did.
Will you?

Selah's Saturday Morning Report

I apologize that I didn't get a Friday report posted.  Everything is fine, but yesterday just didn't give me a free time slot to sit and type out Selah's day. 

My husband came to the hospital for lunch yesterday, and I went over to the Ronald McDonald House to do some laundry.  I have chosen not to leave Selah's bedside since she's been admitted, except on Wednesday when my mom stayed by her side while my dad and I went to the Ronald McDonald House for a tour since the hospital gave us day passes.  Wow, what an awesome ministry RMH is!  Volunteers serve meals for lunch and dinner every day (although I haven't been able to take advantage of that because I don't want to leave Selah to go over there), and they have free laundry facilities with all of the necessary supplies.  They also have a playground, playroom, exercise room, and lots of rooms for families to stay overnight for any length of time, as long as their child is in the hospital.  It's GREAT!

I walked around the hospital and discovered that the cafeteria here actually has really good/healthy food options.  The hospital also has some extraordinary gardens and waterfalls and outdoor pathways, as well as several great playrooms and lots of neat things to keep kids occupied.  Of course, Selah can't leave her bed, and as an infant, she doesn't need the playroom, but the options are great for mobile kiddos.

After I finished my laundry, my hubby went back to work, and shortly afterward, I discovered blood on the sheets behind Selah's head, at the site where Selah's catheter exits her skull.  I had the nurse call for the neurosurgeon's nurse practitioner to examine further.  After removing dressing, cutting hair (that the dressing was stuck to), the nurse practitioner determined that Selah had pulled on her head catheter, which popped the stitches out (it was sutured into place), which caused the catheter to come out of her skull a little bit, which caused bleeding at the puncture/hole, along with some fluid leakage.

This puts Selah at a much higher risk of infection now.  (She was already at risk due to having a hole in her head, but this puts her at higher risk.)  Since Selah doesn't have an IV, she's not getting IV antibiotics, but she is getting oral antibiotics four times per day.  Hopefully that (and lots of prayer!) will keep Selah from getting a brain infection. 

The nurse practitioner turned the room into a sterile environment so that she could flush the catheter tubing to make sure Selah's line wasn't clogged.  (It hadn't output any fluid in over 24 hours.)  She didn't really want to have to do the flush because it's another potential source of infection entering the brain, but it was necessary to determine if the line was clogged.  The nurse practitioner kicked me out to reduce the amount of possible infection during the flush, and within a matter of minutes, she discovered the line wasn't clogged.  She's just not exactly sure why there hasn't been any output.

Shortly after the nurse practitioner flushed the line, she called me back in to ask if I'd mind assisting her with the cleaning and re-dressing of  clean the head wound at the catheter drainage site.  I was delighted to come back in to help make Selah feel more secure by having her momma by her side, so I got on the sterile gown, mask, etc. and held Selah down while the nurse practitioner worked on the wound.  OUCH!  Selah was not happy about that procedure!  She is one strong girl, that's for sure!  It's amazing how much power and strength this 5-month-old baby has when someone is doing something she doesn't like!

After the nurse practitioner got everything clean and re-dressed, she explained to me that Selah is at an extremely high risk of brain infection right now since the catheter is no longer sutured in place, and there's some leakage at the site.  She was going to contact the neurosurgeon as to the plan and get back with me today on what they want to do.

Selah also had labs drawn this morning, so if her levels are off, she may need an IV again so they can replace fluids she's losing through the external drainage via shunt.  And if they decide to re-suture the catheter (or if they decide to pull the catheter out), she'll need an IV to get meds administered for either of those procedures.  I'm not sure how they'll get an IV in since the PICC team and multiple IV experts didn't have any success after 6 attempts under sonogram!  She may need to go to anesthesia to calm her little body down so they can have better chances of getting the IV into a vein, I'm just not sure.

I'll try to give another update later today once I know more.  Thanks for praying!!!

Friday, March 18, 2011

Selah's Doing Well

Praying for Selah, written in Arabic, English, and Hebrew
Artwork compliments of Michelle in Jerusalem
Thank you, Michelle!!!

Selah had a much better day (Thursday) than her morning started out with all of the IV problems.  She does not have an IV right now, and they're hoping that will work until she has her shunt replacement because she'll already be undergoing anesthesia for the surgery, so they can place an IV without causing horrendous pain.

When I stated that Selah had been poked 6 times trying to get an IV in, I should have clarified a bit that this wasn't your normal poke, like when they're trying to draw blood and miss the vein, or the vein rolls, or it collapses.  They had a sonogram machine where they could see her veins, and there was only one vein that was a possibility.  All of her other veins were too small to get an IV in.  So, they used the sonogram machine to guide the MASSIVE needle (poor baby girl!!!), but they could not get it to go into that vein.  I cannot even tell you how much blood was dripping out of poor Selah's arm.  SIX times.  They had to change her sheets afterward.  The screaming and wailing and flailing and fighting and kicking was so, so, so very hard to endure for ME, and I wasn't even the one experiencing the pain!!!  I felt so horrible not to be able to help my baby girl.  I was praying so fervently, even laying hands on Selah and the IV specialists, and one nurse even cried out for God to help her, but nothing.  Oh it was horrible.  I'm just glad that's all over with now.

As far as I know, Selah won't be getting any more tests done today (Friday).  They know there's more to drain from the hematoma still, based upon how much has been collected thus far in the drainage collection, so it's my understanding that they're going to wait until Monday to repeat the CT scan to determine the size of the hematoma as well as the size of the ventricles where they need to place the shunt.

They started Selah on oral antibiotics tonight (since she can't have her IV antibiotics anymore...the antibiotics are to help prevent infection since she has a hole in her skull and her abdomen right now), and it appears that the oral antibiotics are hurting Selah's tummy.  She's only had one dose thus far, so maybe it's just something coincidental.  Prayerfully, the tummy ache will go away and not be related to the antibiotics, as she must take the antibiotics 4/x/day!

Selah's constipation problems have been resolved through prayer and Miralax!  Yay!  She went so much today that it went all over the bed!  At least her tummy doesn't hurt due to constipation!

Thank you all for praying!  We are grateful!
Thanks, Michelle, for the beautiful artwork!

Thursday, March 17, 2011

Thank you for praying for me!

I am fearfully and wonderfully made...

An Update on Selah's IV Issues

Oh my goodness, my poor baby girl has been through SO, SO much in the last 6 hours!!!  Below are my Facebook status updates, which began at 5:04AM, although Selah's IV went bad at 4AM, so this whole ordeal really started at 4AM. :-(
Lorraine Immel Patterson Thursday, March 17, 2011, 5:04AM
Need prayers that they can get an IV in Selah. Poor baby's IV went bad, and after 4 attempts and an hour of screaming, still no IV.
Lorraine Immel Patterson  Thursday, March 17, 2011, 5:35AM
They're fixing to try again on IV. Please pray
Lorraine Immel Patterson  Thursday, March 17, 2011, 5:38AM
Never mind. I asked if they could wait an consider a pic (sp?) line with pic team at 8 am. Pic team is much more skilled and if they could do a pic line, they could also draw labs from it instead of poking her multiple times each day!
Lorraine Immel Patterson  Thursday, March 17, 2011, 7:24AM
Trying again for an IV now.
Lorraine Immel Patterson  Thursday, March 17, 2011, 7:29AM
Not successful. Trying once again. This is nauseating. Poor baby girl.
Lorraine Immel Patterson  Thursday, March 17, 2011, 7:32AM
Selah has 3 nurses holding her down with blood running all over her arm and sheets as they're hunting for a vein. Sickening.
Lorraine Immel Patterson  Thursday, March 17, 2011, 7:36AM
They're doing this under sonogram and still can't get it. Selah's just screaming in pain. Lord, why?
Lorraine Immel Patterson  Thursday, March 17, 2011, 7:52AM
Not successful. I am going to refuse any more attempts. She needs a PICC line, done under anesthesia. My poor baby girl. Pray they'll get orders approved to do this, pray I'll know before Selah is wanting a bottle bc she can't have any formula for 8 hours prior to anesthesia. I feel sick.
Now it's 10:34AM, and I'm happy to report that Selah is finally asleep and not screaming.  Oh.My.Gracious.That.Was.HORRIBLE.  Every team of IV experts was called in, each believing they could successfully get an IV in Selah, but every single person failed.  SIX attempts in total.  Plus another team who came in after I refused no more attempts, so they just looked under sonogram and agreed not to try.  Praise God!
The neurosurgeon's nurse practitioner came in and explained that she feels it's not necessary for Selah to have an IV until she goes in for her next brain surgery, which won't be until Monday at the earliest.  She's stopping the IV antibiotics, and is no longer replacing cerebral fluid via IV that is drained through the external shunt drain.  Selah is back to being able to eat, with no chance of undergoing anesthesia again today.  Oh, and labs are only going to be drawn every couple of days now as well.  The nurse practitioner was so pleased with Selah's progress, that she also ordered vital checks move to every 4 hours instead of every 2 hours.  So, hopefully rest will come in 4 hour increments, provided the other handful of staff who pop in every 20-30 minutes will honor this new 4 hour schedule.  (I really want to hang a sign on the door that says, "SHHHHHHHH...if you are responsible for waking Selah, you are responsible to stay until you get her back to sleep.  Or play with her for the next 4 hours, without picking her up or letting her roll over, or pull at her tubes, or..."  :-)  I'm just grateful that there's a possibility we can actually have a little peace in longer increments now.  Praise God! 
Now it's time to hopefully get some rest.  Both Selah and I are exhausted.  My mommy heart is badly beaten up right now.  Flashbacks of Chrissie receiving stitches without anesthesia, flashbacks of blood squirting everywhere during codes, flashbacks of Mommy not being able to help my baby girl.  Nauseating still. 
I will fight for my new baby girl.  Grateful God has entrusted me with this precious life.  Praise God!
"Speak up for those who cannot speak for themselves..."  Proverbs 31:8
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