Friday, February 28, 2014

Day 28 - Willow

Our story has just begun.

I sit right now on the floor of her tiny room, looking at book shelves, her crib, and a giant world map on her wall. Kyle has tools out and is installing a dimmer light switch for her. The waiting has become fairly agonizing.

We press on even though often I feel like screaming things like, "Who cares about a dimmer light switch?!" The next minute I'm begging Kyle to install it. It's strange the things waiting with no sense of control can do to you.

Kyle and I first talked about adopting when we were engaged. We waited a long time, however, to take the first step. When we finally took that leap of faith, God began to clearly show us this was the path we were to take. Every door we walked through (picking an agency, learning about different types of adoption, going to a conference, talking to people who had adopted) seemed to fly open and lead us to the next thing. It was an exciting time, and we are blessed to have experienced encouragement and confirmation everywhere we turned at that time.

Everyone who adopts knows about the special needs checklist. This was a dreaded thing. We tried to fill it out together one night and argued. We put it off while doing other paperwork for a while. Finally, it was one of the last things we had to fill out, and we tackled it again after much prayer. Kyle was open to heart conditions, and I was hesitant about them. I was hoping for a need that was less scary to me.

Kyle got us tickets to go see Steven Curtis Chapman in concert in September of 2013. We were so excited, because we knew about his advocacy for orphans in China through Show Hope. After enjoying ourselves completely, we bought several CDs and a book for our soon to be child. I journaled about the concert, and we became pretty obsessed with his newest CD, "The Glorious Unfolding." I called it our adoption anthem, and we literally listened to it all of the time. We also decided to apply for a grant from Show Hope.

We got a call on an ice day (off of work and stuck at home) in December from our adoption agency. We had only been 'logged in' for two days. Our sweet social worker proceeded to tell us that they had a referral for us, and it was a little girl of about 16 months. She explained that her heart condition was more severe than we had indicated being open to. She asked if we would like to view her file, and with a rush of adrenaline and joy, we were saying, "Yes, yes, yes!"

 We opened the file, reveled in discovering our daughter, and delighted in the beauty of God transforming our lives in an instant. We had as long as we needed to review her file, because the referral was through a one-to-one partnership between our agency and her orphanage in Guangzhou. So, we waited for over a week for the cardiologist to get back to us about her condition. I remember a lot of happiness and giddiness during that week and a half. At the same time, I kept trying to suppress it, because we were supposed to hold her 'lightly'. I prayed for signs, which was an unusual prayer for a pragmatic person like me.

The day came for us to consult with the doctors. It wasn't the news we had hoped to hear. We were hoping they'd say, "It's not as bad as it seems; she will be fine once she gets here." Instead we learned that hers is a condition that will probably require multiple surgeries and lifelong care. Willow has transposition of great arteries, ASD, VSD, PDA, and pulmonary atresia....?

After we hung up, Kyle began to get emotional, because we were really invested in her at this point. I was emotional as well, but I suddenly started grinning. He was a little bit thrown by that. I explained that as I watched him cry and heard the details of her condition, I felt like a mom. I looked at him and saw her dad. It was so clear to both of us that we were her parents.

We began revealing to all about our baby girl, starting with our families at Christmas celebrations! This was a blast! We made wonderful memories. My mom realized that her first birthday was the same day we had a fundraising garage sale in which tons of family and friends showed us lots of love. That was a little gift from God for us to discover. In January, we got our update on Willow with six pictures. She had four teeth! We had always been a little bit confused about how she had received her first heart surgery (in April of 2013). Who had provided this for her? Kyle saw some keyhole shaped doorways behind her in these new photos that looked familiar. He went to Show Hope's website and as we sat on the phone with each other from our prospective workplaces, we realized that Willow was being cared for by the incredible volunteers of Show Hope! This was a goosebumps moment. She had been moved there at about 8 months of age, right before her surgery. Kyle found an old blog entry asking for prayer for her when she was about 11 months, right after her surgery.

I don't know; it may have not seemed very incredible to other people. However, God blew us away with this discovery. We were flying so high! I had prayed for signs. Our 'adoption anthem' was sung by the man who started the organization that saved our daughter's life. How very strange and incredible. Of all of the Christian singers we could have relied on throughout the adoption process, we chose to listen to him. And of all of the beautiful and innocent Chinese orphans needing help, they had helped her. Show Hope and her birthplace were even about 800 miles away from each other! We don't know the details surrounding how Show Hope found out about Willow and what made them decide to save her life, but we're just so glad they did.

Willow is now almost 19 months old, and we pray for her several times each day. We never really stop thinking about her no matter what we are doing. A part of our hearts is half a world away from us at this time. To those who have held a referral picture in their hands while hoping papers were not stuck under a pile on a desk somewhere, I know you understand. It is very possible to miss someone you have not yet met.

We know that she is our child. We love her unconditionally and without reservation. We constantly prepare, read, and learn about adoption and heart conditions, because she motivates us to do so.

I told several students at my elementary school about our adoption. I think it might be as simple as a little fourth grade boy articulated to me. I explained to them that she did not have a mom or a dad to take care of her, and we wanted a baby. He said happily, "It's a win/win!"

No matter what may come, we are very in love with our daughter. God knows the number of days she will be on this earth, and we will soak up every single one He gives us with her. We have no idea of the trials that are to come, but we know we have within us the eternal source of strength, wisdom, and comfort to face any hard days. At the end of the day, she's just a little girl in need of parents, and we are parents in need of a child. Like any other parent loves a child who happens to have a physical difficulty, we just love her.

Your prayers for us would mean so much. We hope to travel in May of this year. Our story has just barely begun!

Music video:

“The Lord is my portion,” says my soul, “therefore I will hope in him.” The Lord is good to those who wait for him, to the soul who seeks him. Lamentations 3:24-25

May God bless all of these precious heart babies, and may He continue to show doctors miraculous ways to save and enrich their lives.

Thursday, February 27, 2014

Day 27 - Bella Strickland

It's amazing what you can go through in life in just 12 months.  This time last year we were still waiting on LOA for our daughter and now she has been home for months.

Since "28 Days of Hearts" 2013 we received LOA (letter of approval) the end of March, TA (travel approval) the end of April and flew out end of May.  There are so many amazing stories of love throughout our fundraising journey that I would love to share but more importantly there is so much more I need to share about Bella.

Bella's referral information (special needs) was the following:  CHD post/op (ASD & PS).  Tumor removed from her right eye lid, congenital cataracts and Aniridia (no iris) of both eyes.  

 With only one vague update in 10 long months, we were nervous to get to her to see what kind of health she was actually in.  After they placed her into my arms . . . well "placed" seems so gentle and peaceful . . . . . we should go with "tossed" . . . she was so upset.  A few minutes went by and she got more and more scared and angry.  It literally felt like she was fighting for her life all over again.  As I placed my hand on her chest to support her I could feel a hard almost sharp chest plate and nothing about it felt normal.  I was very concerned at this point!

My first thoughts were that this was one of those things I feared of not being prepared for, but later that night I was able to reach out to my Heart to Heart moms and they blessed me with facts and comfort.  I had lots of time reaching out since Bella would not let me get near her for three days after gotcha day.  HEARTBROKE MOM!!  You still can't help having that moment of "We really did this!!  Can we do this?  Wait we have to do this!"  and just wanting to get home to find out what our new future would look like.  And that's just what we did!

We hit the ground running after being home just three days the doctor appointments began.  We were blessed to be able to have all the specialists set up ahead of time waiting for her!

The formed her first "in the states" Echocardiogram and was having someone weeds through all the medical translated noted from all that had been done to her over the past 24 months.  He was very happy with how the heart repaired looked and said that was how he would have wanted it to look afterwards if he had done the repairs.  I was through the moon and so relieved at the news.  He said that by the sounds of her heart that there is defiantly leaking, some to be expected and some to keep an eye on.  Her chest plate was just due to her body's healing and at a later age we could put her in a special vest if needed.

I have to take a minute and express the excitement and "confirmation" I have in how God has worked each detail of care out for Bella's future.  No greater blessing that to have Dr. Terry King, "Pioneer Awarded" Pediatric Cardiologist for being the first person to implant and close an ASD in a human being as her doctor.  He has paved the way for what has been possible for so many of your own children in a cath lab.  He moved here from Ochsner setting up our NICU/PICU cardiac cath lab, started the first congenital heart disease program and founded the Ronald McDonald house.  This is why we are so blessed to have him as Bella's heart doctor.  No matter what was to come he would be able to care for her.

We go back each six months for now to check her Pulmonary Stenosis, the size comparative to her growth and the leakage from the Pulmonary & Mitral values.  Through all the check ups and out we are also learning how to be a new family and they (with brother Peyton) are learning what he means to have one another.

Next week we set out for a family road trip weekend to New Orleans Children's Hospital.  We had an appointment with the infectious disease Dr. for labs and a checked over to make sure she wasn't a carrier of anything from her country.  She looked great and labs were great!  Not even any need to go forward to a Geneticist.

Celebrating all her first along the way . . . BaBa had the best Father's Day ever with his son and now daughter that he had always dreamed of . . . .

Okay moving full steam ahead . . . Heart CHECK!  Blood CHECK!  NOW EYES!!!

We knew that Bella's eyes also reportedly had serious issues to be unfolded by specialists.  We had researched and knew if this ended up being true, she could go blind.  We had her eyes explained and tested.  As the Dr. was looking into her eyes and don't know who held their breath longer me or her daddy.  Just a few looks and Dr. H said she did NOT have Anrindia first of all she an eye defect called Coloboma, which was just the color issue of the eyes didn't continue around to complete the circle.  Praise the Lord that she wasn't going to be blind but Coloboma does cause congenital cataracts and she had one on each eye.  Our calmness was quickly gone when he turned and said that she was completely blinded from the cataract in the right eye and because he didn't know at all if she had it at birth or only a few months, he had to remove it Monday morning at 5am.  He seemed so eager but the truth was there was not a magic number of days when the brain would stop telling that eye to function and when that day came there would be nothing we could do to get it back.  So first thing Monday morning Bella under went the removal of her cataract lens and I new one was replaced.  

We stayed close to the hospital in a hotel for two days just to make sure we wouldn't have any problems.  She did great and didn't seem to be in a lot of pain.  

We started patches the next week over her other eye trying to make her weak eye strong and waited for the call that her eye glasses were ready!

She was so happy the day she got her glasses!  I had no idea just at her young age what it would mean for her to really be able to see!  You could not tell by her actions before that she was blind at all until we saw her actions afterward!  NEW LIFE!

She loves the WATER more than anything.

We were given a 2 1/2 year old that was sad with no one to love her, thin 24 pounds with all her ribs showing, small in 12 months clothes that couldn't run three steps ahead, broken with CHD, and blind with cataracts.  In what now feels like forever ago, we have watched her be given sight.   Grow to become a good eater; she loves meat of any kind.  Get strong through physical therapy, running, swimming and playing ball.  Learn skills with special education, she loves puzzles and drawing the most.  Grow with a whole new language through speech therapy.  It is truly remarkable of how much they pick up so quickly with English.  She loves bossing her older brother around!  She is a very active and normal three year old little girl now that just doesn't like to sleep without momma in the room.

After being in our arms 9 months "today"!  I have to tell you what a miracle she is to have in our lives.  And as she is sitting right here beside me now in her beautifully bright red time out chair, telling me how much she loves me so she can get up quicker . . . (BIG smile) I encourage you to search your heart for special needs children that have one important special need, the need for a chance to grow with love and care and they all will show you how they will beat all the odds stacked against them.

The truth is, it's hard but I wonderful kind of hard, a kind of hard that you surprise yourself because you are shocked that you got through it and all that this process makes you accomplish as a person.  There are times throughout the journey that you freak you and even fail but each day is a new day and a fresh start to fight for a precious life, your child.

While these sweeties prove to be typical two and three year old, they come with all their own extra hang up and insecurities.  They will be scared away from your, will be in diapers longer, will stand strong when you want simple submission, no matter how long you will stand it out as "I am the mother" they will always get the last word.  That toy will always end up where they want it instead of you and they will make you a little crazy!  It is crazy WONDERFUL and nothing that you can't be overcame with love and time.  

Our Bella (beautiful) Xin (happy) KaLare (clarity) you have proven to be all these things added to our lives.  Daddy and I are so proud to have been chosen to be your parents and share our lives together no matter what comes we will face them together as a unit, a family.

Wednesday, February 26, 2014

Day 26 - Lizzie

I am honored to share Lizzie’s story but I must say I’m having a difficult time putting an account into words that will adequately give people even the smallest glimpse into what an unbelievable child she is.  I suppose I will start at the beginning and try not to make this too long.  I’m afraid that probably won’t happen. 

On February 24, 2013, I was home from church with my son Luke who was sick with an ear infection.  Oddly, my dear friend Erica Hammond was also at home with an ear infection several hundred miles away in Alabama.  Erica had been and continues to be an inspiration and an amazing source of encouragement throughout our adoption process and way before dating back to our college days.  We happened to check in with each other that morning.  I had determined not to look at any of the waiting children’s lists, wanting to be matched with just the right child God had designed for our family.  Erica knew this, she was also one of the few who knew exactly what limitations we set for our future daughter, she knew we were only willing to accept minor/correctible special needs (cleft lip, minor cardiac issues, and the like), and in spite of all this she knew there was something greater in store for our family. 

She told me to look at a little girl called “Cullen” on one of the waiting lists. I said “nah”, and tried to carry on our conversation and switch the focus to her sweet Yuan Yuan, the precious gift she was waiting for.  Didn’t work.  The Lord had already used my friend to plant the seed.  So as we talked I snuck a peak at “Cullen”.  I did not hear anything else Erica was saying.  I proceeded to email a request for her file.  Can’t really say I can remember any thought process, it all sort of just happened.  Thinking I would hear back later on Monday, I was stunned when I received a copy of her file within minutes.  It was Sunday morning for heaven sake.  I squealed when the file came in to my inbox, I had already confessed to Erica what I had done, so she squealed too.  I then let her go so I could look over it. 

Terrified doesn’t begin to cover it.  This child had a multitude of untreated heart defects, severe developmental delays and the file was over a year old. There was no way of really knowing what we were dealing with. Cullen was older than we were asking for and much sicker than we thought we could handle.  So many people had passed her file over.  But then there was her picture, with her big bright eyes. Josh came in from church with the other boys; he looked at me and could tell I had been up to something.  I pointed to the computer.  Could this be our Susan Elizabeth?  There was excitement in the air, though nobody really knew she was the one.  Actually, I take that back, deep down I know we knew. 

We went through all the hoops, dotted all our i’s, crossed all our t’s, sent her file to every physician I knew.  The answers all came back with a similar response, “this is a very sick little girl” or “there are too many unknowns” or “she will require too much of your time”.  On the last day of the 2 week period, we had to make a decision.  We spent every moment praying for the ability and strength to say yes or the courage and ability to say no.  We had a conference call with an international adoption doctor, she basically told us Cullen was not a good match, she was beyond our help.  With every delay or issue she pointed out I wanted to yell “shut up!”  We got off the phone and Josh said, “this does not change things for me, I want to proceed but don’t want to force you into something you don’t think we can handle.” He heard my tears and was willing to accept what ever I decided.  He didn’t realize that I had left the final decision up to him.  With him on board I knew exactly what God wanted us to do.  I told Josh “I am not crying because of what she said, I am crying because we can’t get to her fast enough.”  And with that, we sealed the deal; we had a face for our Susan Elizabeth.

From there we went through the monotonous adoption process.  I became friends with people along the way with similar timelines who I now consider sisters. We did a few fundraisers and started a virtual run for our girl, the support we received from family, friends, and strangers still amazes and humbles me!  We learned her oxygen saturation was in the 60% range, on a good day.  She had multiple VSDs, transposition of the great arteries, severe pulmonary stenosis, and the slight possibility of her having double outlet right ventricle, as well as associated minor pulmonary hypertension issues associated with all the above. She was also not walking, eating, or doing much of anything a 2 year old child does. We managed to get a medical expedite for our daughter. Then we were informed about 3 weeks from our travel time that Lizzie would not be able to fly commercially.  What?!?  Panic set in.  But even that detail was taken care of, Susan Elizabeth’s cardiologist knew a thing or two about flying sick babies out of foreign countries.  So off we went with one-way tickets to Hong Kong.  Sounds like a bad movie title, doesn’t it?  The medical flight was still in the works and we left prepared to be gone weeks.

We took a train into China, and got ready to meet our little girl face to face.  I hate to sound cliché, but the second we met eyes I was a goner.  The same intense and amazing attachment I had with my biological children occurred when I was handed a frail, blue, 14 pound, 30 month old little girl.  And there simply are no words for what transpired between father and daughter.  From that moment on we never questioned if we had done the right thing.  We went through all the same rigamaroo all the other adopting families go through, though at the medical appointment the doctors and nurses could not believe she had not come straight from a hospital.  They were not happy with her condition.  Not only was she blue, she was severely malnourished.  Thankfully we got through all of that and were cleared to bring Susan Elizabeth home.  During this time we were also informed to pick only one short and sweet name for her, at least until she learned her new name.  This is why “Lizzie” has predominately been the name of choice. 

We got home after taking the long way back and quickly fell into being a family of 6.  The boys adored their little sister and she stepped up like she had been in command of them all along.  She met her cardiac team and several meetings were held to determine just what type of surgery she would need.  It was also determined she did indeed have the double outlet right ventricle issues we were concerned of and her ventricular septal defects were also severe and very large.  In the end the Rastelli was decided upon and the choice to have her surgery here in San Antonio was made.  Other than not being able to eat from anything but a bottle, the rest of her systems looked good.  Her lungs appeared surprisingly strong considering and neurologically she was ok.  Her delays only seemed to stem from a lack of exposure and interaction.  Day by day Lizzie grew and blossomed.  She started walking and saying “momma”.  We learned she loves music, laughter, Cinderella, and Mary Poppins.  She also likes pretty clothes, hairbows, and shoes.  Did I mention she LOVES her daddy?

Lizzie’s surgery took place on September 17, 2013.   We had a scare in the beginning when they thought the VSD closure wasn’t going to happen, we were warned of the possibility of a single ventricle repair.  Things were worse than what they expected once they got in.   Somehow they were able to do it and were pleased with the results.  All of Lizzie’s numbers looked perfect.  She was extubated the next day, she was happy but groggy.  All was going well…

It took awhile to figure out things weren’t good because she was such a fighter.  I knew something was wrong after the first day off the ventilator but couldn’t quite make the medical team grasp my “something’s just not right but I only know because I’m her momma” urgency (that and I am also a PICU nurse, several years out of practice, but some things you just know).  All her numbers still looked “ok” she kept fighting but she was not my Lizzie.  That night I struggled to keep her post surgery O2 sats above 85% while everyone was busy with the patient next door who was crashing.  The next day she stopped responding, she stopped breathing, she went into respiratory failure and was eventually reintubated.  Her lungs completely shut down.  The new blood flow was simply more than her little body could handle.  Though it did not present in the typical fashion, Lizzie was suffering from what is known as a reperfusion injury.  Her lungs filled with fluid, collapsed, and she was unable to get rid of the CO2 building in her blood stream. 

The very next day she was placed on an oscillator, which is a type of breathing machine that actually stops the patient from inhalation and exhalation.  It keeps the lungs inflated while it shakes from the inside promoting gas exchange. The oscillator is only used on the sickest of the sick and there is a lot of risk involved.  It was the most unsettling thing I have ever seen, though it was better than seeing her struggle.  Lizzie was given a paralytic and did not actually breath for 6 days. I have never felt so utterly helpless in all my life.  Complete surrender.

Over the next several weeks for every one inch forward Lizzie was slammed with at least a yard of setbacks. She endured hundreds of xrays, multiple chest tubes, labs, CT scans, failed attempts to come off the ventilator, unexplained fevers, terrible intestinal infections, random viruses, major withdrawals, constant vomiting, multiple line placements, moving hospitals, continuing failing lungs, and a worsening heart.  Almost everything was unexplained.  Everything was good with Lizzie until it wasn’t.  In all things.  Her labs looked good until they didn’t.  Her echocardiograms and her pulmonary hypertension all looked ok, until they weren’t.  Her oxygen saturation was great until it wasn’t.  She breathed fine on the nasal cannula until she couldn’t.  No real warnings from Lizzie until she just gave out.  Every time.  Our favorite anesthesiologist dubbed her “Murphy’s baby”.  Whenever a new doctor/specialist came in and they would say “such and such never happens, but it is a risk we have to warn you about…” Everyone within hearing distance would gasp and cross themselves.  Never say never to Lizzie.  She is no text book child.  

Towards the end of November the decision to cath Lizzie and do a bronchoscopy was finally made.  We needed answers.  The bronchoscopy was done first, the pulmonologist came out with some good news/bad news.  Lizzie had two right lungs, meaning her left lung had three lobes.  The normal left lung has only 2 lobes and is smaller allowing room for the heart.  They also found Lizzie had bronchomalacia leading into her left lung, meaning her left airway was completely blocked/collapsed. This completely made sense now.  It explained why she did well with the bipap mask because the pressures it provided inflated her airway for her.  When on just the nasal cannula her right lung was doing all the work, she was ok for a little bit but then she pooped out.  An answer.  We were told to anticipate Lizzie needing to wear the bipap mask for 1-2 years until her lungs strengthened.  Then came the cardiac cath.  Though the previous echos did not indicate such a severe problem, they found the VSD repair had completely opened up amongst other things. Everything needed to be redone.  Her heart was enlarged (which we somewhat knew already), adding to the bronchomalacia issues.  Her heart was adding pressure to her left lung.  None of this was great news, but we had another answer.  Finally.  And that felt better than none.  Oh, and because of the upcoming surgery we then realized she needed, they went ahead an inserted another PICC line (the others had been removed because of fevers, infections, etc).

So we prepared for surgery on the Tuesday before Thanksgiving, then the Friday after, then the next week… But then came the rhinovirus.  Then more unexplained fevers. And swelling.  Aaaahhh!  She was getting sicker and sicker and there was nothing to do. Her heart was getting weaker but she wasn’t healthy enough for surgery.  I would come home and look in her closet and see the clothes she would never get to wear.  The chance of being home for Christmas was gone.  I switched her wardrobe out for fall/winter clothes anyway.  I tried to come home and pretend I was ok so my boys could be ok.  But we weren’t.  Nothing was ok.  To watch your child dying, and that was what was happening over and over, is a feeling I never want to go through again.  Just when we thought things were better… BAM! Every. Single. Time. Then one morning Lizzie woke up and was swollen beyond recognition.  An ultrasound was ordered of her right arm where that PICC line had been placed.  It was in an artery rather than a vein. What?!  Because of her extremely complicated anatomy and her two vena cavas, apparently on xray it looked to be in the correct spot and was cleared for use by several people.  This was the only time I felt the ball had been dropped in the course of Lizzie’s care.  I was angry.  But God used this to teach me.  And He used this situation to show His power and protection to group of people who often rely on science for answers.

So, with all that behind us, surgery was scheduled for December 16th.  And everything went as perfect as it could!  Praise the Lord!  There was an immediate change in our girl!  December came and went and plans for her discharge were in the works.  Because her inability to eat the old fashion way (can you believe after months of being in the hospital and intubations she never took the time to learn how to chew and swallow), a plan for a g-tube placement was made.  GI surgery was set, and true to Lizzie fashion, it was cancelled due to some random virus and scheduling error.  Finally it was placed and another bronchoscopy was performed. After her heart was repaired, it was no longer enlarged, and some room opened up allowing for her lung to expand and her airway to open partially.  Woohoo!  Lizzie would be able to exercise her lungs with periods of time off the bipap!

Could it be truly possible, was bringing Lizzie home really going to happen?  We were in the home stretch!  Then guess who decided to run a fever? Then start coughing? Then start vomiting?  Guess who ended up with influenza A?  Guess who had a flu shot and got it any way?  That would be our girl.  The thought of spending another 2 weeks in the hospital was enough to do us all in.  Her room was set up, there were arrangements for homehealth nursing already made.  We just needed Lizzie to catch a break, or rather, to not catch anything else.  The decision was made after another 5 days of close observation to try to send her home anyway.  She was stable from an ICU standpoint, even with her flu symptoms. It was literally a game time decision.  We woke up the morning of January 20, 2014 still uncertain we would be leaving the PICU, Lizzie’s home for the past 18 weeks.  After spending every holiday from Columbus Day to Martin Luther King Day (including her 3rd birthday) in the hospital, Lizzie was going home!  She could throw-up there (but I really  wish she’d stop it already).

Our days and nights are filled with constant care for our precious daughter.  It has not been the homecoming we expected and it certainly isn’t what we pictured this time last year when we first saw her sweet little face. When we started the adoption process nearly 2 years ago, all I wanted was a baby girl.  I knew not to expect perfection, or did I?  I envisioned pink nurseries and pretty dresses.  A little girl that would make her daddy have tea parties and her big brothers watch princess movies.  We expected sniffles and fits. Maybe a small surgery to fix what needed fixing.  Little did we know, our hearts were what needed fixing.  Y’all, if I could take away the pain Lizzie went through and the hardships she faces I would; but otherwise I would not change a thing.  We are different now.  To have answered the call to be the parents to such an amazing little girl is humbling.  To see so many lives touched by her story is awesome.  To know that God has something incredible in store for a child that was once written off as helpless is beyond exciting. To be used to promote the beauty of adoption and ultimately Christ’s love for us all is indescribable.   

Lizzie has been home now for exactly a month.  As we were getting her ready for bed the other night, Josh was rocking her as she had a breathing treatment.  He looked at me and said “you know, she’s still on all these machines, and this isn’t what we were expecting… But look how happy she is.  This is good.”  I couldn’t have said it better.  This is good.  And yes, there is a pink nursery, there are princess movies, and pretty dresses.  There are even sniffles and fits.  And so much more, including tea parties to come, I am certain!  Please do not let the fear of the unknown keep you from saying yes to a child who needs your love.  Do not set limitations when following God’s calling.  He will never leave nor forsake you.  That is a promise.

I am sorry to have made this so long, it is all too fresh to condense just yet. Writing this has been somewhat of a release for me, what amazing things she has overcome! If by some chance I still have your attention and you want to follow Lizzie’s journey further, please visit  To those who have been with us from the beginning, thank you. 

Tuesday, February 25, 2014

Day 25 - Tommy

Thankfully we have enjoyed a fairly quiet year medically for Tommy.  He is on medications to slow down the rate of heart failure. He can breathe on his own. His saturation levels stay fairly stable in the mid 90’s when he is inactive, but will dip with activity. He is very low energy. The doctors have taken him off of one of his heart medications to see if his energy levels would improve and they did a bit. They have told us he is most likely at his top energy level. He currently goes to kindergarten one morning a week; we are going to try for a couple more days a week with the next school year.  He will have a full time Para-educator with him at all times when he is in school. If he maintains this level of stability he will be able to go to four months between cardiology visits and then maybe six months.  We have so much to be thankful for.

We focus on what we can do.

He loves to go swimming.  

He is the best little ring bearer. 

He really loves swimming 

He loves the beach. 

He loves the park. 

He loves to eat berries. 

He is an absolutely wonderful little guy. His smile is constant and huge. Our lives have been richly blessed by our son. Yes, there are lots of unknowns with his health. We are thankful for and appreciate each and every moment.