Gummy Smile is Gone

That's right...Amelia has...a...tooth.  I am not going to try to post a picture of it, cuz that would just be rude!!!  But the gummy smile is no more!!!

One More Post...This is the BEST ONE for today too!!!

Well, Amelia did it last week.  She officially, without any help from mom and dad (other than a nudge), started walking on her own.  Now, in the last week or two, she is doing it all the time!!!  She moves from the coffee table to her toys and the kitchen all the time, all by her self.  It is so much fun to come home from work and have Kim make her stand up and have her walk to me.  Puts me on the floor!!!

It is interesting what perspective does:  Everyone tells us that we are going to be sad when she starts to walk because we will not be able to keep track of her and she will start to get into everything.  But for us, she is still her and able to walk!!!  That makes every milestone for us so special with Amelia.

Here she is walking in the kitchen.  I was just able to snap this before she was in my arms!!!

Out of Cath

Amelia is in her recovery room (kind off...more like a recovery shared space with 25 others).  Docs said she did REALLY good.  They are very happy with how she is doing and did not find any problems visually.  Now we wait for biopsy results that will test for several layers of rejection.  We should be home by dinner...a thought Kim and I are very excited about.

Thank you for continuing to pray for Amelia.  She continues to thrive and grow.

6 Month Cath

We have checked into PCH for Amelia's 6 Month Cath.  After getting up at 4:15 to be at the hospital by 5:30, we were delayed for a short time for an emergency from another patient.  Amelia was finally taken down for her cath about 8:45, which was just over an hour delay.  We were not too upset since we are no longer at the place that we are the emergency.  It worked out OK too since we got her up at 4:40 and she did not sleep in the car.  She slept in Kim's arms and then in mine for about 1:30.  This got us through the wait.  Now we wait for the doctors to complete the procedure and the results.  We are expecting to go home today.  When we got our phone call for the schedule, we were told to pack overnight bags.  After talking to our nurse, she said she did not think we would be staying.  Our cardiologist also assured us that we should be headed home today, so we did not pack bags for the night.

6 Month Heart Birthday

Amelia has had her new heart for 6 months now.  We have her routine 6 month cath scheduled for Sept 25th.  This is another rejection and function check.  We do not expect any problems since she has been doing so well!!!

Please pray she will do well and there is no rejection!

Happy Birthday

Amelia celebrated her 1 year Birthday today.  Kind of low key, but she is still here to celebrate.  Thank you to everyone who wished her well!!!

Zion

Sorry for being such a slacker and not updating for a while…Amelia and life keep us busy!!!  July 4 weekend we were able to take Amelia to Zion (not the holy city…the National Park).  OK…truth be told, the 4^th was on a Wednesday, so we left the weekend before.  This was a major milestone for Kim and I for lots of reasons.  Zion is an annual event for our family that I started before Kim and I were married with my college campus pastor.  It is one of the craziest weekends we have canyoneering down the slot canyons of Zion.  Think movie 127 Hours – just no emergencies.  This would be Amelia’s first trip.

We made our reservations in January before we knew about needing a transplant.  If you do not make reservations in January, you get stuck is the “bad” spots – those with no shade.  We kept our reservations hoping we would be able to still make the trip.  After good biopsy results and the all clear from our transplant team, we continued our plans.

In Zion, we met up with lots of college and “Zion” friends who have followed our story and because of geography, we only get to see in Zion.  They were excited to see Amelia.  We had a great time, but not the normal Zion trip.  Kim was not able to do any canyons, but let me go down one.  We knew this would be our life now, but we still came because there was one hike we really wanted to do:  Angels Landing.

Angels is a crazy hike from the floor of the canyon to a point thousands of feet up.  The hike consists of a trail carved into the side of the sandstone, many switchbacks and a hike on a knife edge out to a point that is Angels Landing.  Google it and you can see the pictures.  This hike would be our milestone.  We decided that before she was born.  We started the hike…I was loaded down with Amelia and Kim with all our water, food and other stuff we needed for Amelia for the day.  We finally made it to the top and celebrated with our campus pastors the year God carried us through and the precious gift He has given us.

We did some other stuff while in Zion, but nothing as significant for our story with Amelia as making it to the top of Angels Landing.  For Kim and I, this will certainly be an important event in the years to come.

3 Month Heart Birthday

Today we celebrate Amelia's 3 month heart birthday.  Three months ago, she got her heart.  Kim and I can not believe how much she is growing and changing.  She has so much energy.  She is eating more and getting closer to sleeping through the night.  No teeth and not quite walking.  Kim and I thank God every day for the bundle of joy He gave us in Amelia.

We were able to take out her NG Tube two weeks ago.  OK...truth is that she pulled it out and Kim worked super hard to keep it out.  She was able to give Amelia all her meds orally.  So we have been able to give her all her meds orally for a few weeks.  She looks so great without the tube taped to her face.

Here is a picture I took this morning before work as she waited for breakfast.

Blessings.

No Rejection

We received the biopsy update this morning.  No rejection!!!  We are looking forward to more freedom now.  We are planning a trip to Zion (an annual event for Kim and I) and some monsoon trips to the Grand Canyon.  We are supper excited.

Thank you for continuing to pray for Amelia.

Out Of Cath

Amelia is out of her cath.  It went well and the docs are saying we will be home in time for dinner.  We have no official results yet, but the fact that we are talking about going home is a good sign.  Amelia is waking up and eating food.  We should have results from the biopsy tomorrow or early next week.

Cath Biopsy

Amelia had her 10 month birthday this week and we are about 10 weeks out from transplant today.  Tomorrow Amelia has a standard post transplant Cath and biopsy to check for rejection.  She has not showed any signs of rejection during clinicals, so we are confident we will have a favorable report.  Please pray for Amelia as she going under anesthesia tomorrow.  We have a long day at the hospital scheduled for tomorrow but we are confident God has Amelia is His hands and He will watch over her as the doctors work.

Cheerios

Amelia had her first taste of Cheerios tonight.  She only ate one.  But hey...progress!!!

It has been one month since transplant and she is doing great.  We are down to one a week clinicals for now.  Amelia is still on a lot of meds, but she has done well with them.

Here is a pic of her first Cheerios experience.

NG Tube

Amelia has had a rough time taking her meds.  She started throughing up as we gave them too her early this week.  Kim and I saw the likelihood of placing an NG tube Tuesday because she was also not eating enough because she did not like the meds.  In fact, if we had had a tube, we would have placed it yesterday.  Our nurse started preparing us for the placement yesterday as well.  Well, today we put the tube in during clinicals.  What we did not know is most transplants go home on a NG tube.  Hopefully Amelia will start to keep her meds down and we can continue to feed her with the bottle.

Amelia on Channel 10 Fox Phoenix

Today, Amelia was featured in a story on Fox News in Phoenix.  Check out her story:

http://www.myfoxphoenix.com/dpp/community/childrens_hospital_heroes/baby-amelia-joy-heart-04032012

Thank you Andrea and Fox news for sharing Amelia's story.

Kimmy, Brian and Amelia

Fox 10 Phoenix

On one of our last days at the hospital, Fox 10 Phoenix interviewed Amelia.  Well...Actually, Kim and I were interviewed with Amelia there.  We have heard the interview will air tomorrow (Tuesday) on Fox Channel 10 in Phoenix.  When we find the story online, we will post the link for you to see.

Fox 10's website in Phoenix is:  http://www.myfoxphoenix.com/

Blessings!!!

One Year

What a year we have had.  On March 28^th, 2011, Kim and I sat in our OBGYN’s office waiting to have a “talk about your ultrasound”.  March 29^th, we were at St. Joe’s talking to a Maternal Fetal Medicine specialist and March 30^th, we were given our diagnosis – HLHS.

Exactly one year later:  On March 28^th, 2012, Kim and I were hearing the results of Amelia’s first Post-Transplant Biopsy.  March 29^th, we were being discharged from the hospital after a seven week stay culminating in a Heart Transplant for Amelia.  March 30^th, we were back to PCH for our first Post-Transplant Clinical visit.

The last 12 months have been, for Kim and I, the most profound journey of our lives individually and as a couple.  We have been stretched and we have grown because of it.  We have crashed to the bottom and risen to meet the challenges of a baby with a Congenital Heart Defect and then learned all about Heart Transplants.  We have learned more about medicine, hospitals and insurance and yet, we have experienced the love, compassion and Grace of our God.

Amelia is doing so well.  We are so blessed to see her grow and interact with us.  She is smiling and talking to us all the time!  We can not believe the difference we see in her from before her transplant!

Our (her) journey is not over.  We have replaced one condition for another.  She will continue to be followed by a cardiologist for the rest of her life!!!  We start a grueling regiment of clinical visits, initially twice a week and gradually slowing to every 4-6 months (we think) not to mention the dozen or so medicines she is on.  Amelia already had her first biopsy to check for rejection.  She will have another one in 6 months and then annually on her heart birthday thereafter.

Over the last 12 months, we have learned the meaning of several Bible Verses:  John 14:27  I am leaving you with a gift, peace of mind and heart.  And the peace I give is a gift the world cannot give.  So don’t be troubled or afraid.  Also, Psalms 55:22  Give your burdens to the Lord, and He will not permit the godly to slip and fall.  We have learned what it means to trust in the Lord for ALL things.  We have had a peace that we cannot describe.  People have asked us how we have done it?  We say two things:  You would do no less for your kids and, by the Grace and with the strength of Christ are we able to walk this road.  We know what it means to have built our house on the ROCK OF CHRIST and to see the storm come and the wind blow and yet we are not shaken, we are not destroyed.  We stand a testament to the love of Grace and Peace God!!!

Room is Packed!!!

Our room is packed and we are about to walk out!!!

No More Tubes

Amelia's surgeon just pulled the last of her tubes.  She is now back to where she was before we checked in nearly 7 weeks ago!!!  She looks great too!!!

We have to check a few more things, but the plan is to head home today.

Back from Cath...

And looking great.  Docs said she is exceeding expections.  Now we wait for results that's should be back tomorrow.

Headed to Cath

Amelia is down in the cath lab getting her biopsy.  This is her first check for rejection.  The results will be back tomorrow.  If everything is OK, we will probably be able to go home on Thursday.

Looking Towards Home

Amelia's first post transplant biopsy is scheduled for Tuesday.  Biopsies will be a regular part of Amelia's life as we watch for rejection.  If all goes well, we have a tentative go home date of Thursday.  Friday, the last of her IV meds was discontinued as well.  Now, she only has two pumps running to keep the RA line open (there are two openings at the end of the line).

For the last 5 or 6 days, Amelia has been showing signs of medicine withdrawal.  She has not been sleeping well and had a few times of very fussy spells.  We have been treating them and we hope she will be over the withdrawal before we go home.

Kim and I are super excited about the probability of going home soon.  We are in our 7th week of living at the hospital.  It has been a very long stay, but we are excited Amelia is doing so well.

Here are a few pictures:  The pictures with Kim and I holding Amelia are from March 15th, the Thursday of Amelia's transplant.  They are from late morning.  The last one is from Wednesday the 21st, less than 7 days after transplant.

More Tubes Gone

Amelia's PICC was removed today.  Now, the only line she has in her is her RA.  That line will stay with her until we go home.

We have been learning about medicines and how to treat her when we go home.  She is doing great.  What a change.  It is so crazy that one week ago, we were still waiting for our call.  Now, Amelia is such a different baby.  We are so excited.

The Cause of the Heart Failure

This evening, or night ICU Doctor shared with us some interesting information.  After the surgeon removed Amelia's heart, it was sent for a study of the function.  The report back was that Amelia's arteries supplying  blood to her heart were not large enough to allow sufficient blood flow and her heart was slowly dying.  Basically, her heart was slowly moving towards heart attack and eventually she would have not been able to live.  This was a result of the HLHS condition she had.

What a FACE!!!

Today, Amelia's face finally returned!  She has not been on a feeding tube since coming back from surgery and today, our nurse weaned the oxygen support.  Now, she does not have any tubes on her face!  It is so exciting for us to see her face with nothing on it.  It has been five and a half weeks!!!

Today, one of Amelia's labs came back and the immunosuppressant have started to do their job.  Kim and I have to have masks on full time while we are in her room.  She is doing so well!!!  We can not believe how fast her recovery from the transplant has been.

Be sure to check back in the next few days when we can get a picture posted.

More Tubes Removed

Amelia continues to have a good recovery.  She now has both chest tubes removed and one of her ART lines was pulled today.  We had a little bit of a rough time today as the doctors wanted to take her off one of her heart medicines.  We called our Transplant Coordinator (actually our nurse did) and she put in orders to put the medicine back on.  Shortly after the medicine was put back on, she started to improve again.  She is looking GREAT and we are so excited that she continues to improve.

We expect to have to start to wear masks in the next 24-48 hours as her immune system starts to take a hit from the immunosuppressant.  We should also start to learn about caring for her this week from our Transplant NP.  We have a lot to learn and understand.

Chest Tube Removed

Amelia has had a great evening, night and morning.  She has been eating and interacting with us.  They just pulled one of her chest tubes.  We can not believe how great she had been doing.  We thank God so Mich for how well she has been doing.

First Bottle

Kim is feeding Amelia her first bottle.

First Post Transplant Echo

WOW!!!  Amelia got her first post transplant echo.  It looks so different.  We have two chambers.  It was beautiful.

A New Journey Begins

Some 24-36 hour journey we have just had.  Wednesday night, I (Brian) went home with my mom for the night.  I did not sleep the best, but my plan was to get into work early and head back to the hospital because Kim had been having some rough late morning/early afternoons with Amelia.  I have no clue what time Kim called, but there was a potential donor for Amelia.  I made it in to work early to get some things done.  Kim called, our doctor was headed to the airport.  I finished a few things up and headed to the hospital.  Our transplant coordinator said we would know by 12:00 noon.  Then the call:  The doctor found a perfect match and we are a go!!!  While Kim and I signed paperwork and talked to everyone involved with her transplant, Amelia slept most of the morning and early afternoon until the nurses and doctors came to take her down to the OR it is about 3:00.

Kim and I took an hour or so to grasp the gravity of where we found ourselves.  One year ago, we were about five months pregnant, two weeks from “the phone call” that no parent wants to get and completely unaware of what HLHS is or the journey we find ourselves on right now.  Little did we know how much we would grow and how much we would learn.  We cried and talked about how we got here and prayed for protection and peace.

Then, we got a call from Kim’s dad saying a vehicle just pulled, flashing lights with big letters spelling out:  Organ Transplant.  Out jumps a number of people and a cooler.  As they walk through the front door, he asks, “Is that for Amelia?”  A nod and a smile as Amelia’s heart walks into the hospital.  It is about 4:30.

We finish cleaning up the room, taking some of Amelia’s things (swing and highchair) to the car since we will have lots of machines in the room and space is important, and she will not be able to use them for a while.  We eat dinner and continue our wait.  We were told to expect to wait until around midnight before we are able to see Amelia.  We get periodic updates and everything is going well.

Our first “good” update comes from one of the cardiologists.  With a smile on his face as wide as my arms will stretch, he tells us she has done AMAZINGLY.  We could not have received a better heart!  She is doing amazingly and will be up shortly.  It is about 8:00.  About 30 minutes later, our next “good” update.  Our Chief Cardiology Surgeon comes up.  His report was even better than the previous.  What you have to understand is this.  We love our surgeon!  He is brilliant.  But, he is straight up honest, to the point and matter of fact.  He does not show emotion.  We understand this and have come to expect it.  He is brilliant and fights very hard for his patients.  When he left, we knew that she did GREAT!!!

We were finally able to come to her room about 10:00.  She looked so much better than we ever expected.  We were ready for her to be similar to what we saw after her first surgery, limp on her bed.  However, it looked like she was peacefully sleeping (with a 1000 line and tubes and wires, but sleeping).  We watched as the nurses moved and arranged her IV lines and wires and everything else.  Kim and I finally tried to crawl into bed for some sleep about 1:00.  Tried is the key word.  There were 3 nurses in our room with every light on.  We were tired enough that sleep came.  We awoke to our transplant NP in our room and one of the ICU NP talking about extubating her, which they did at 9:20.  She has been doing wonderful since.

It has been amazing, scary, exciting, wrenching, tiring and wonderful to walk this road.  We have a long rode yet to walk.  The next 12 months are critical for Amelia.  We will be watching closely for rejection.  Kim and I will be learning a new set of medicines, complications, rejections and side effects.  We will have to learn a new baby.  That is exciting and scary for us.  We have done it once…we will do it again.

God continues to show is exceedingly abundant Love and Grace toward Kim and I and our Lady Bug.  We are grateful for the wisdom and knowledge He has provided our doctors to know how to treat her.  He has giving Kim and I the strength to walk this road with Amelia and Amelia the strength to strive despite the difficulties and complications she has been dealt.  We are humbled by the love we have been shown.

Please pray for continues recovery.  Pray for Kim and I as we care for Amelia and continue to raise her.  Pray the doctors are able to identify and treat any problems that come alone and that Amelia’s body will not reject this foreign material that has been implanted in her body.