Elise's Playroom!

So I finally get to write a fun post!

For Elise's first birthday present we turned the "closet" off of our rec room into her playroom!

I absolutely love to decorate.  Especially for Elise!  So you can guess I had a blast creating this room for her.   We created a room that can grow with her but she can still enjoy at one year old.

First we had to choose a paint color.  Since when we put her nursery together we didn't know if God would bless us with a boy or a girl, her nursery is mostly gender neutral.  So I really wanted to give her a girly room, but I hate bubblegum pink on a wall.  We always use Sherwin Williams for our paint so I searched Pinterest and found the perfect pink: White Dogwood.  It's super subtle & airy; the perfect pink for our sweet princess.  We also wanted a chalkboard wall in the room so we made sure to use foam rollers for a smooth surface on that wall.

Next, I really wanted a reading nook.  I found this canvas & wood tent on clearance at Restoration Hardware Baby & Child (online).  It was still a splurge but it has little pink stars all over it and was way too perfect to pass up.  The star lights around the frame were a gift but I think they were purchased at Target.  We put E's Pello in there so she already loves to snuggle in for story time.
We also found these adorable sherpa chairs at Target.  I can't wait until she has friends over to watch Cinderella in these chairs!

I also wanted lots of storage.  We found these ClosetMaid cubbies & inserts on Amazon.

We also found her little tea party table on Amazon.  It's KidKraft and we adore it!

I made the alphabet banner with precut scrapbook paper and gold stickers.  My mom helped me out by laminating them at school.  Easiest craft ever.

Lastly, my favorite art in the room are the custom quotes made by the lovely Lindsey Pilgreen!  Follow her on intagram @b_h_handmade.

Hope you enjoyed E's sweet playroom!  It's nice to write about stuff other than hospital visits!

Untether Elise's Spinal Cord - CHECK!

So I'm awful about keeping this blog updated.  I apologize!

We got back from Johns Hopkins a week ago now after Elise had neuro surgery to fix her tethered spinal cord.  The surgery went very well and although it's always terrible to have your child in the hospital, the experience as a whole was extremely encouraging.

Some of the highlights from that week:

Sunday: Our flight was cancelled and we barely made it to Baltimore in time for a bottle and a quick nap before we had to be up again for surgery.  But we made it!  Praise the Lord!

Monday: Elise had spinal surgery.  Thankfully her neuro surgeon didn't tell us prior to surgery that this is one of the more complex surgeries he does or I would have been a lot more worried.  God knows when to withhold information from you!  She did great though and even smiled after she woke up.  I'm sure she was still loopy from the surgical drugs but it was nice to know that our girl was still there!  We spent the next 2 nights in the PICU.  The PICU is frustrating because the nurses come in for vitals at least every 2 hours but it seems like more.  And the nurses seemed pretty green in terms of experience, which to a mom of a child with medical special needs can be annoying.  I know, I need to work on my patience.

Wednesday: Elise moved to 9 South which is the unit where she'll do the majority of her recovery for future surgeries.  This means it will be our home for months at a time here and there for who knows how long.  The nurses there are wonderful. They appreciate that I want to do everything I possibly can to care for our girl but are always available for support if we need it.
Also, Elise's urologist stopped by to see us!  He is kind of the head of the surgical team and is THE BE/CE guru.  The funny thing about him though is that he is Nothing like your typical surgeon.  Dr. G walks in the room with his booming voice, shares stories and carries on like you're running into him at the store and he's excited to catch up with you.  We love him and so appreciate that he took time out of his busy schedule to stop in to see us and Elise even though she technically wasn't under his care at the time.
We also got to meet 2 other classic bladder exstrophy families that were there for bladder closure.  I already consider those mamas friends and their boys are dear to our hearts!

Thursday: We met Vine and his parents!!!  Sweet friends that we had connected with on the OEIS/CE Facebook page saw that we were in town and came up to Hopkins so we could meet in person!  Even though Elise was super sleepy, I could tell she instantly fell in love with Vine and we fell in love with his whole family!  We also found out that we will probably be overlapping Vine's and Elise's closure surgery/recovery at 9 South.  Again, we hate to have our kids in the hospital at all but I must say I'm excited that our new friends will be nearby.

Friday:  Elise got to sit up!  She seemed to have a seamless recovery and her surgeon was very impressed with how well she did throughout the week.  It's always a good thing when a patient impresses a surgeon.  She also took her first hospital wagon ride!  For those that don't know, the big kids that are hospitalized get to use wagons to get out of their rooms from time to time!  To us, this means our baby is growing up!  ;)

Saturday:  Dressing off and discharge!  Always a good day.  We said "See you in November" to our new BE friends, who will have their boys back for additional surgery the same time Elise will be coming in for closure.  God has given Hopkins urology dept an amazing ministry that creates connections between our families for the support we all desperately need!

Sunday: Home again, Home again, Jiggity Jig!  Elise really struggled on the flight back and days after but seems to be doing MUCH better and her incision is healing beautifully! We are so thankful for all of our friends and family who have supported us throughout Elise's journey and especially during her hospitalizations.  Even those who just like on our little Facebook pictures help us feel like we're not alone in this.  We love you all and thank you for all of your prayers and support!!!

Happy Birthday and Gotcha Day, Lisie Girl!

Elise turned one year old on May 8th!  I can't believe we already have a one year old!  I know most people say they want their kids to stay little but I'm the weird mom that LOVES to see her grow!  Her personality is shining more and more every day and she's SO TOUGH!  I couldn't be prouder to be her Mommy.

Elise's "Gotcha Day" is today, May 15th.  I remember this day last year so clearly.  I had quit my job the day before knowing that her birth parent's were planning to sign relinquishments the next day.  I had us all packed and ready to go.  We sat and twiddled our thumbs without a phone call until that afternoon.  My stomach was all in knots!  At about 3pm our social worker called and said we were clear to head down to Birmingham to meet our daughter!!  OUR DAUGHTER!  I was all smiles although in constant prayer for both Elise and her birth parents since although it was a joyous day for us, it was not so for them.   When we got to the NICU we were met by some very confused nurses because they had only minutes before been told that there were prospective parents waiting in the wings.  We were finally allowed back to see her and WOW!  I didn't know baby's could be so small.  And then she opened her eyes and looked at us.  We were from that first look, forever hers.

We praise God for bringing Elise into our family to fill the space He had held only for her.  We thank God that He protected and healed her tiny body and that He continues to do so daily by bringing us the information for the right doctors and the support & knowledge from other OEIS/CE/BE families.  We thank God that he placed us back in our hometown 5 years ago knowing that we would need the support of our parents.  We thank God for the relationship He has built between us and Elise's birth family; in what could have been a very difficult situation He has brought comfort and love.  We thank God for Elise; for every inch of her perfect self!  We love our daughter!!!

We ask for LOTS of Prayer this upcoming week.  Elise has spinal surgery to detether her spinal cord up at John's Hopkins on Monday May 18th at 7:30am (6:30am Central.) She will be in surgery for at least 5 hours and will remain at the hospital at least 5 days. Please pray especially for her neuro surgeon, Dr. Ahn, that his hands would be steady and that there would be no nerve damage.  We know she's tough and God has her in His healing hands!  Thank you!

Johns Hopkins & Surgery Plan

Where to begin?!?  We arrived at Hopkins at 5:30am to an operative waiting room absolutely full of families.  Families who were quite obviously from all over the world.  Pretty cool, not something one sees every day so dark and early.  Once we were called back, the pre op nurse saw that Elise was an "exstrophy baby" and she became excited because "Exstrophy kids are always my favorites."  We were already impressed since so many medical professionals we have come across don't really know what exstrophy fully entails.  We met several people before Lisie went back for her EUA (examination under anesthesia) and we continued to be impressed by every one of them.  Even the main surgeon we were there to see stopped in to chat with us before hand.  If anyone has much experience with surgeons, especially a good one, they typically have pitiful social skills and bedside manner.  We didn't run into this even once at Hopkins.  

During her EUA, Elise was evaluated by a urologist, orthopedic surgeon and a general pediatric surgeon.  She also had a clinic eval later on that day with a neuro surgeon.  Here's what we learned from each doctor:

Neuro (detethering her spinal cord): He did suggest that her cord should be detethered before her major closure surgery.  He also suggested waiting another 3-6 months for optimal timing for surgery and that recovery should be about a 5 day hospitalization.  We are planning on doing this at JH sometime this summer.  Btw, this neuro surgeon trained directly under Dr. Ben Carson (1st neurologist to ever successfully separate conjoined twins and hopeful presidential candidate for upcoming term.  Pretty cool.) 

The rest of the surgeons will be in coordination for her major closure surgery.  The urologist is the "head" of this team although the orthopedic surgeon drives the timing of surgery based on growth and that her bones are not fully formed yet.  He likes to wait until the kids are 18-20 months old so that would put her closure surgery at late 2015/early 2016. 

General Pediatric Surgeon (deals with her omphalocele and intestines):  Surgeon said not to wrap her omphalocele ("O") before surgery.  He said it may make closure easier but it won't change the number of surgeries for closure and if it's making her throw up what's already hard to get in her then it's not worth it.  (Yay!)  He also is hopeful that he can close her "O" in one surgery with using synthetic and donor tissues.  He also stimulated the area where her anus should be to see if she has any of the muscles needed for normal defecation.  Another Yay, she does have those muscles!  He thinks between the fact she has those muscles and her good growth should indicate a decent length of large bowel that a pull through could be in her future!  This isn't 100% and may not be advised later on but it is encouraging!  

Ortho (dealing with her pelvis):  This is the hard part of this big surgery sequence.  Typical people have a space of only 1cm between their pubic bones.  Well, the ortho surgeon measured the distance between Elise's pubic bones and found that she has a separation of 9.3cm.  This means when we go for the closure surgery she will need an initial surgery  to just do the osteotomies (breaking her pelvic bones) and placing certain rods and cranks so that over the first 2-3 weeks they will slowly crank her pelvic bones together before the big closure surgery.  Her separation is simply too wide to bring the pelvis together during one surgery.  After the 2-3 weeks of slowly closing her pelvis, the major surgery of closing her bladder & omphalocele will occur.  During this surgery, ortho will place different pins and rods that will stay in place while Elise is in traction for an additional 6-8 weeks.  That means 8-12ish week hospitalization.  Here we go again!  

Urology (bladder):  This surgeon is the "captain" of the team as the other surgeons call him.  He is THE urologist who trains all the other top urologists across the country.  He has patients who fly to him from all over the world for reconstruction.  He sees more exstrophy cases than anyone else in the world. Exstrophy is rare in itself and Cloacal exstrophy is the rarest type of exstrophy.   Even still he sees 6 new cloacal exstrophy cases per year. We're pretty excited to be working with him.   He did have some disappointing news for us though.  When Elise was born her bladder was separated into two sides with intestine in the middle.  Those bladder halves were brought together during her first surgery though her bladder still has two distinct halves. The urologist told us that the right side of her bladder the tissue is "okay but not great" and the left side of her bladder the tissue is "simply junk".  This means her current bladder tissue will probably not be useful to her for the long run.  He is going to try to create a bladder out of this tissue during the closure surgery but it most likely will not last long or grow with her.  She will continue to simply drain into a diaper like she does now (but out a urethra that will be created for her).  She'll do this until she's older and starts asking to wear big girl panties and wants to be dry.  At that point we'll do one of two things:  She'll either have a pseudo bladder created for her out of part of her small bowel or have a urostomy placed until further notice.  A urostomy is where the ureters bypass the bladder completely and are brought together into one tube and a stoma is created on her abdomen, much like her colostomy.  She would then just drain into a bag and change the bag as needed.  These are both kind of temporary fixes since the surgeon said he can guarantee that around the time Elise is in puberty, "they" will be growing bladders through research.  What he didn't say but we understood is that "they" means Him. He has been doing research for some time and is already having success with growing human bladder tissue.  So, even though she will have some years without a great means for urination, she already has a connection to the person that will change hers and the lives of so many others with this ground breaking research.  Another thing that he mentioned is that they are not so focused on the here and now in terms of creating short term remedies for her struggles, but are trying to do what will be best for 40 year old Elise with two children and 60 year old Elise with grandchildren.  (Talk about a tear jerker.)  He even went into the logistics of what childbirth would look like for her!  I just love thinking about Elise at that stage of her life and am so thankful that the Lord has brought us to the best surgeons available to reconstruct her little system in order to have a bright and "normal" future ahead.  

The rest of our day was also informative in many ways.  We were given a tour of all of the possible areas she would be in the hospital and were even able to meet a family who had a child currently in traction after bladder closure.  They brought us into their son's hospital room with open arms, answered every question we had and even showed us every bit of what traction looks like up close and personal.  We feel much more comfortable after seeing what her stay would look like.  We learned from them that a big part of recovery is pain management and finding the right "cocktail" for that specific child. And then, of course, trying to wean them off of all that pain medication after coming off traction.  We have already seen what it's like to wean Elise off heavy pain meds and it was terrible.  Not looking forward to that.   This is the first exstrophy family/child we have ever met in person and we felt an instant connection to them.  I hugged that mama's neck tight before leaving and plan to keep in touch.  Johns Hopkins actually hosts a picnic for all their exstrophy families every June!  We look forward to getting involved in those and have Elise make some friends who understand what her day to day is like and maybe walk through life together with them, even if from a distance.  

We were even given a tour of the temporary stay facility for families just down the street from the hospital.  This facility seems to have answered all of the negatives about RMH (Ronald McDonald House) and are doing things much more catered to create a stress free place for parents.  We would not be required to stay every night and family would be allowed to stay any time. They will not kick us out if we don't check in with them one day and there is no time limit.  They view their part as a place for parents to come take a nap or shower or stay the night as needed and not have all the strict requirements that we experienced with our NICU time at RMH.  Yet another stressor off our plate!

So in summation: everyone is wonderful at Johns Hopkins and we are excited to work with them for her reconstruction.  The plan is hopefully to detether her cord in July-ish of this year and we're hoping for a January 2016 closure if the surgeons agree that would be good timing.  We would like to have Thanksgiving/Christmas at home if it would not be hurting her to do so.  

Thank you all for your continued prayers!!!  You have no idea how much we feel them every day!  Praise the Lord for our sweet angel baby, wonderful doctors and our amazing support system!

Yes, my dear.  You are definitely Fearfully & Wonderfully made!  

How We Became a Family

So I finally decided to share our whole story since God is pretty incredible and it's very evident in the plan He has created for our life.  Here it goes…

Wes and I always knew we would adopt but we wanted to try to conceive as well.  We had no idea how much emotional & physical pain comes from infertility.  After a specified amount of time & lots of prayer we decided to stop the emotional chaos of infertility treatment and focus on adoption.  If you didn't believe that God is sovereign before reading this, I hope our experience will help you to understand.

So on January 27th, 2014 we submitted our application for domestic adoption to Lifeline Children's Services.  We did not have our first meeting and receive our home study paperwork until February 23rd.  We were told at that meeting that most home studies take about 4-6 months and placements can take anywhere from 1-5 years.   For those that don't know adoption lingo a "home study" is a 5 interview  process with LOTS of government and agency paperwork mixed in between all of those interviews.  It is a very stressful but also introspective time in which we learned a lot about ourselves and each other.  A "placement" is when a child actually enters your home/life.  Our home study went a lot quicker than most.  In only 2 months we had completed all of our paperwork and interviews.  We were only waiting on the government to approve our background checks when we received a call from a friend at church asking if we were interested in adopting identical twins.

On May 6th, I had another surgery to help lessen the pain of endometriosis.  On May 9th, we received a call from our social worker that the twins in question had been born 13 weeks early, one of the girls had been transported to Birmingham due to a birth defect and their birth parents had chosen us as the adoptive parents.  Nothing dealing with adoption is 100% and Absolutely nothing is in stone until on paper & timing elapsed.  We spent the next week waiting on information and receiving very little.  I will not go into the nitty gritty of this week but I will say it was one of the hardest of our lives.  On May 15th we finally got the call that the birth parents had signed relinquishments for our daughter, Elise, but they had chosen to parent her twin sister.  God has a plan for everything on this earth and though it was hard to see at the time we are able to see it now.

So, May15th, I quit my job and hopped into the car with my amazing husband, packed and ready to spend the next several months in Birmingham with our brand new daughter!  Craziness.  We pulled up to Children's and navigated our way to the NICU, where we would soon call home.  The nurses were a little surprised to see us because they had only minutes before been given notice that there were adoptive parents that had been waiting in the wings.  Children's of Alabama's NICU is a surgical NICU so all the children there have something out of the norm going on.  Because of that, all patients have individual rooms, thank the Lord.  When we arrived we were brought into Elise's room.  This was probably the most amazing moment of our lives.  There, in her isolette, lay our itty bitty daughter who had been through more emotional trauma in one week then we had in our entire lives.  And she was BEAUTIFUL!

The next day clearances had finally gone through and we were able to sit down with doctors and nurses and try to understand Elise's condition.

• First off, Elise was born 13 weeks early which means her lungs were not fully developed and very sick.  She had PIE in her left lung and her right lung would often stick to itself due to all the fluid.  She was on very high ventilator settings and ended up on the oscillator for a week.  So, just simply being premature led to a very scary lung situation.  
• Secondly and most important: Elise was born with a very, very rare condition called OEIS or Cloacal Exstrophy.  OEIS only occurs in 1 out of 400,000 live births and only 1 in 4 of those cases are females.  Elise is a very rare bird!  Another little fact that makes Elise rare is that she and her twin sister were mono mono twins which means they shared an amniotic sac.  Thankfully we knew that Elise and her sister were mono mono twins because at first the doctors could not tell us physically what her gender was.  Someone unfortunately decided wrong and Elise was noted as "Baby Boy" in the computer for a long time.  There is no way for mono mono twins to be anything but identical so we knew she was a girl.   You better believe we decked her room out in pink to avoid confusion!

So, What is Cloacal Exstrophy?  

Cloacal Exstrophy is the most severe of exstrophy cases in which the abdomen and pubis do not close causing many internal organs to be on the outside at birth.  

Classic signs of OEIS/Cloacal extrophy include:

• Omphalocele (abdomen does not close causing intestines & other abdominal organs like the liver to protrude, only covered with a membrane and with time, skin.)
• Hemi-bladder with intestines protruding in the middle. (These are on the outside, bladder and intestines are inside out and flat.)
• Large Pelvic symphasis (Pelvis is not closed and very far apart.)
• Imperforate Anus (Anus is not present)
• Tethered Cord (Spinal Cord is tethered to sacrum.)  
• Many OEIS children also have spina bifida.  Luckily, Elise does not.   
• Here is a summary written by a doctor that we hope to visit in the near future at Johns Hopkins: http://www.hopkinschildrens.org/cloacal-exstrophy.aspx

To fix all of this takes many many surgeries.  Because Elise was born so early we are going very slow with her treatment because growth is imperative.  Growth can also be very difficult for these children.  So far so good with Elise!  

Through a long hard road in the NICU, including surgery to bring her bladder sides together and create a colostomy,  Elise beat the odds and came home after only 3 months, only a week after her due date.  No one expected her to leave that soon!  God is so good.  

We have been home for 2 months today and Elise has doubled her weight since we left Children's!  She is eating well and proving, as usual, to be one tough chick!  She even had emergency laser eye surgery due to retinopathy only a week after we got home.  Didn't phase her a bit.

At the moment we are at a stand still on treatment.  She is still on a very small amount of oxygen because her lungs were so sick at birth and her omphalocele puts pressure on her lungs causing her reserves to not be as large.  We see many, many doctors with lots of tests done each month.  Her next surgery will either be to fix her tethered cord or the big surgery to close her bladder, omphalocele and pelvis.  We will know more on this after a few tests and appointments in December.  

Today, we extremely thankful for God's sovereignty, infertility, adoption and modern medicine.  We stay connected with Elise's twin and birth parents through email and know God is in complete control of that relationship.  We all hope to keep the girls connected and our relationship strong.  God is doing wonderful things in their family as well.

Elise's adoption finalization is set for the end of November!  Hopefully this date sticks, bearing some government paperwork.  We have been impatiently awaiting this day for a long time!  We can't wait!  

I will keep those who are interested in Elise's world informed through this blog.  We are very grateful for all those who have been holding Elise and us up in prayer since our story became known.  We appreciate any continued prayer and support as we still navigate this rarely tread path.  Although it seems very scary and unknown we have YET to feel afraid.  Honestly!  We can't say that we haven't felt stressed, but afraid, nope!  God has given us an incredible peace about Elise's entire situation and we know He has Big plans for her!  We're just so excited and blessed that we were chosen to be her parents!