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.

Extubating

The docs want to extubate already.This is scarry for Kim and I. She has never done well comming off the vent...but she has never had a fully functioning heart either. This is all new, but exciting territory for us.

Recovering

Amelia is back in her room and starting the recovery process.  She looks very good!!!  The next 24 to 48 hours will be the first critical hump we need to make it over, but she has a good start.  Praise God.  We are so thankful and grateful and we can not express in our hearts how excited we are.

Amelia Has Her Heart

Amelia has her heart.  She is still in the OR, but she is doing well and should be up in the next hour or two.  Thanks for the prayers.  Keep praying.

Our Heart is Here

Amelia's heart just walked through the front door at the hospital.

In Surgery

Amelia is in surgery.  It will be at least 6 hours before she is back (10pm Pacific) and probably later...maybe after midnight.  Keep praying for Amelia!!!

A New Heart is On It's Way

We just got word from our transplant team.  We are go for transplant.  We are now waiting for her to go down for surgery.  She should be back to her room late this evening or very early tomorrow morning.  Please pray for everything to go better than expected and that she has no problems and no complications.

This may be the day

We received our phone call early this morning.  Our surgeon is probably on the ground right now looking at a potential heart for us.  We will know for sure within the next 2 hours.  Please keep praying!!!

A Month and Counting

So, if we had any questions about if Amelia should or should not be in the hospital, lets just say that there is no doubt.  We had an accidental attempt to wean her meds (all at one) late this week (when her IV line clamp was left in place for about an hour) and she really did not do well.  We spent the weekend recovering from that attempt.  Today (Sunday) she has been doing great, laughing, smiling and interacting with us again.

This week, Kim and I convinced the doctors to let her take food as she wants and as much as she wants all day and all night.  She has done great.  She had some problems with bowel movements that we have been treating as well.  Amelia would scream from time to time and we think we narrowed it down to the need to pass gas or poop.  She seems to be doing better from that as well.

Amelia has made good friends with the nursing staff here at the hospital that she now has nurses fighting for her regularly.

We are still waiting for her new heart.  We are very aware of how fragile she is right now.  Please pray that Amelia continues to do well.  She is on the verge of falling over the edge.  I have to explain what that means.  Amelia has very little reserve heart function.  The doctors have many options to continue to treat her that are progressively more severe.  For the time she is stable.  However, when she gets mad, she throws up.  When she gets agitated, she gets mad.  Also pray that we have continuity of care - meaning that we do not see a lot of new nurses and that we are able to keep a nurse for 2 or 3 shifts in a row.  For Amelia this becomes important because it takes time for the nurse to learn Amelia and they need to understand the subtleties about what and when to do things.  Also pray that we are close to a new heart.  The wait is draining for us.  Pray for Kim and I as we wait.  We hate to ask God for a new heart for Amelia because we are painfully aware that for us to gain, someone will be losing something very precious to them.  Our final request is for us to be able to rest.  Kim and I were able to go home to nap today for about 4 hours and it was amazing.  It was the first time we have slept in our bed at our house in over a month.

The Wait

If there is anything that sucks about being on the transplant list (beside the fact that you have a problem so severe that you have to be on the transplant list) is the wait.  And waiting is what we are doing for now.  We are starting our fourth week in the hospital.  I am not sure I can say we are holding up, but you do what you have to do for your kids!!!

Amelia has been having pretty good days, so to speak.  She has her times of crankiness and fussiness, but all in all, she is doing OK.  She regularly wakes up screaming sometime between 1 and 3 am.  This is the hardest part for Kim and I.  We go to bed early every night (we try to be in bed by 8:30, most times we are by 9:30).  I am still working and have to be up at 6:00 to be to work.  So, we do the best we can to catch up on the weekends.

For now, Amelia is still doing many of the things she did at home.  She smiles and talks.  We have had some of the nurses so many times now that Amelia even smiles and talks to them too.  We have her sit up as much as we can and try to make her stand (though supported).  She does pretty good for a short time and then she gets tired and passes out again.

We continue to look for the lessons God wants to teach us in this time.  I think it is funny that many people think Christians have a crutch in Jesus.  Many people say to us that they do not know how we do it.  I think about the story of the two builders in Matthew 7:

Therefore everyone who hears these words of Mine and acts on them, may be compared to a wise man who built his house on the rock. And the rain fell, and the floods came, and the winds blew and slammed against that house; and yet it did not fall, for it had been founded on the rock. Everyone who hears these words of Mine and does not act on them, will be like a foolish man who built his house on the sand. The rain fell, and the floods came, and the winds blew and slammed against that house; and it fell—and great was its fall.

As Kim and I walk this road, we do so on the foundation of the relationship we have with Christ.  He is the rock on which we walk.  During this storm, the winds may blow and the floods may come, but we stand on the sure foundation that is Christ, knowing full well that anything that happens is because He allows it to be.  He will provide for His children, as He provides for the birds of the air.