Our First Thanksgiving and Christmas

We are now, officially, out of the Post Op time and Amelia has passed with flying colors!!!  God has been surpassingly great to our family.  We can now look forward to Amelia being a relatively normal baby for the time being.

This week, Amelia had her 4 month immunizations, only 2 weeks late.  She cried less than during her 2 month shots.  She also had her second round of RSV shots.  Boy did she give the nurse a mean face before starting to scream briefly.  We are starting to put her on rice cereal in hopes she will start to sleep through the night.  She is close, but just not quite there.

We would like to thank all of you who have followed Amelia and prayed for her through this time.  We have seen the miracles of God working through the hands of man as Amelia has been given a chance to see her first Thanksgiving and we are looking forward to Christmas with her.  Thank you so much.

This Christmas season, we ask that you pray for others going through medical difficulties, specifically with a new born or child.  We have met many amazing families with children as Amelia went through her treatments.  Some kids have it much worse than Amelia has.  We met one family at Phoenix Children’s Hospital who had a little girl born 5 days after Amelia.  Today, they are still in the hospital and still working to get their little girl to a point they can finally take her home for the first time.  And even with that happens, they will have a lot of work to care for their little girl.  We count our blessings every day that our problems, such as they are, are so small in comparison.

Bless God and Merry Christmas!!!

Amelia, Kim and Brian

Our Little Hero

After a rough night on Thursday, we had a better day on Friday, watching Game 7 of the World Series in Amelia's room as a family.  And now, only 5 days after surgery, we are headed home...soon that is... (still waiting for a few things to happen).  We have had a pretty good visit again.  We are now on a stable road for the time being.  Amelia has a dedicated circulation pattern delivering blood to her lungs to provide oxygen to her body.  We can treat her like a normal baby (for the most part) and she can grow and act like a normal baby.  We have to be careful about infections like the cold and flu, but she has a very good chance of living a long and normal life.


Our little lady bug has become our hero!!!  She has been through two open heart surgeries as the doctors work to replum her veins and arteries and fought off an infection after the first surgery.  She has had more pokes and more tubes than most people get in a lifetime.  And yet, she still smiles and talks to the nurses and doctors so much that they love to stop by and talk for a second before heading home.

So, now we look toward our first Thanksgiving, followed by Christmas, followed by, you guessed it, a trip up Angels Landing during her first annual, 4th of July trip to Zion National Park.  We still have her last surgery to complete the replum, but that is about 3 years off.  For now, we finish her post op over the next month and then enjoy watching our Amelia learn to walk and talk and become a little girl.


Thank you all for your prayers and support over then last 6 months as we learned about our heart condition and as we have spent time in the hospital getting Amelia on a path to a long and fruitful life.  To God be all the glory for the great things He has done for us.

Amelia, Kimmy and Brian

Getting Closer to Going Home

We are continuing to get ready to go home.  It will probably not happen today.  Last night, Amelia was desating (her oxygen saturation was falling into the 60s - the lower limit is 75) for over an hour.  We think it was just the results of pain, but we are remaining on the cautious side, so another day it is.  Other than that, she is doing great.  She is eating and smiling and talking to us all the time.  So, we may be going home tomorrow.

Amelia, Kim and Brian

The Smile is Back and Amelia is Talking to Us Again

Today, for the first time since 7:30 Monday morning, we got to see that beautiful gummy smile that we were used to our Amelia showing us.  She was finally weaned off the oxygen this morning and we removed the nasal cannula.  Shortly afterwords, she erupted into a huge gummy grin!!!  It was the first grin since we duped her on the way to the OR Monday morning.  She continues to get back to herself.  She is talking to us again and the pain seems to be getting better.  The pain meds she is on continue to be weaker strength meds (aka no more Morphine).  We are starting to look forward to going home.  That should happen before the month is over.  We are kind of sad about that because we started to plan Halloween activities with other families who were stuck in the ICU for the special day.  Every day she is getting better!!!

We continue to be grateful for all your love and prayers.  Thank you so much!!!

Amelia, Kim and Brian

Continuing to Recover

I was trying to think of a title for this post, and for a while, the only thing that came to mind was "Continuing to Improve".  That is not really the case since she did not take a dive after surgery, but, Amelia continues to get better.  Yesterday evening, the chest tube was removed and we are back to only the PICC line (which we came to the hospital with from the infection 6 weeks ago).  Kim had a chance to hold Amelia for a few hours yesterday, which was a little hard because she is still in some pain from the surgery.  She had a good night, eating well and was not too fussy.

This morning was a little harder.  The pharmacy was a little slow delivering pain meds, so she was a little unhappy until we could give her the medicine.  Once administered, she calmed down and has been doing well this afternoon.  She is still on oxygen and we are hoping she will be off before bed time this evening.  We are not sure when we might be headed home yet.  We still have a few things to work on.

Amelia, Kim and Brian

Recovering Well

Amelia had a good night.  She was up a few times with a little pain, but our nurse did a GREAT job comforting her.  The doctors have allowed to her eat this morning and she downed two pedialyte bottles.  She also had some mommy milk for lunch.  She is moving around and looking at us too.  She had two more tubes removed this morning, so we are progressing nicely.  She is still sleeping a lot, but we are excited about how she is moving along.  We are hoping to have a chance to hold her again before we go to bed this evening.  Keep praying that she continues to improve and continues to respond well.  Also, due to her new circulation pattern, we have been warned that Amelia will have headaches for a month or two, so pray for her and us that this time is limited.

Amelia, Kim and Brian

Extubated Take 2

Amelia was just extubated again.  She is very horse, but at least we can hear her cries again!!!  What a crazy experience it is to be happy to hear your child cry again!  Who knew that sound would be such music to our ears.

This surgery has already been such a different experience.  Amelia came back from surgery looking much different than the first surgery.  Her chest is closed, there are less tubes and she is already coming off the sedatives given for surgery.

We have had several bouts of GREAT news too.  During her catheterization on Friday, a heart electrical specialist confirmed there were no abnormal electrical paths to worry about, which means one less medicine when we go home and one less worry.  During surgery, the doctors did not have to put Amelia on the bipass, so the surgery went faster than expected.  She is already extubated and no NG (feeding tube), so we are excited.  Hopefully we will continue with the good news all week!

Amelia, Kim and Brian

Back in Our Room

Amelia is back from surgery.  She initially came back to her room extubated, but was still too sedated to breath on her own, so the doctors decided to intubate her again.  She again has a number of pumps (for medicine) and tube running into her body providing the medicines and draining fluids.  Please keep praying.  She looks much better that she did after her first surgery, but we are still sad.

Amelia, Kim and Brian

Out of Surgery

We are waiting for Amelia to make it back to our room.  Our doctors have told us Amelia did very well.  She has been extubated which is amazing.  Please keep praying for a speedy recovery.

Amelia, Kim and Brian

Getting Ready for Surgery

Last night at about 8:30, our nurse came into our room and told us she just received a phone call from our surgeon and our second heart surgery for Amelia is now scheduled for this morning.  Kim and I found ourselves suddenly trying to prepare ourselves for surgery in less than 12 hours.  There are no complications or major worries with Amelia since she is doing well.  The doctors are starting to worry about her Sano Shunt, just because as she grows, she starts to out grow the shunt.

We just signed the consent forms and the doctor gave us the "chances are...for complications...".  So, we are now waiting for the surgical team to come and finish preparations and to take her down for surgery.  Please pray that Amelia responds well and the doctors hands will be strong, confident and sure as they work on Amelia.  Pray for her entire surgical team as well for wisdom in making decisions while they are operating.

Amelia, Kim and Brian

Heart Catheter Procedure - Preparing for the Glenn - Operation #2

Well...It has been a long time since we have posted.  That is because we have been home with Amelia.  Since we checked out following the first procedure, Amelia has grown used to her home and Mom and Dad have become sleep deprived!!!  This was exaggerated over Labor Day weekend because we had to check her back into the hospital for an infection she developed in the incision on her chest.  We were in for 8 days and sent home on PICC line antibiotics 3 times a day for 6 weeks.  Can you say no sleep???!!!  We enjoyed watching her learn to smile and recognize Mommy and Daddy and be a somewhat normal baby.

This Wednesday, we had another clinical follow up with our cardiology team.  Amelia was starting to be fussy for Kim during the day and she had started to change her eating patterns.  The sonographer also saw some slight changes in her heart function.  With single ventricle babies, it is the small subtle signs that cause the doctors and nurses to be concerned.  With the signs Amelia was showing, we checked in for observation.  We had a Catheter procedure scheduled for Oct 28th which was pushed up one week to this morning.

The Cath went well.  Amelia came back awake and fussy - she had not eaten in 10 hours.  The doctors did not find anything problematic with her Sano shunt.  She has grown well and the pressures and functions in her heart and lungs were very strong.  In addition, after her first surgery, there were some heart arrhythmias, and with that, some worries about the electrical paths in her heart.  One of the specialist said he did not see any abnormal electrical paths in her heart during the cath procedure which is very good news.  Our surgeon likes to complete the second operation, the Glenn Procedure, at 3-4 months old.  Amelia will be three months on Sunday, and with her fussiness and since her heart and lungs have developed sufficiently for the Glenn, we are going to stay and get the operation scheduled for sometime next week.


This is both exciting and scary news for Kim and I.  We know that making it through the next procedure completes the last of the biggest hurdles for HLHS babies.  Chances are, when we make it through this surgery, we will be, for the most part, out of the woods as the chances that she will make it on into adulthood rise significantly.  But, we have to go through the difficulties of heading off to surgery again and seeing our little girl come back sedated, limp on her little bed.

Please pray for us as we prepare for next week.  We new the time was short until her next procedure, but we not ready for it to some this fast.  We know God is in control and He has had is hand on our little peanut through this entire time, yet it still takes a toll on us as we go through the surgeries and recovery.

Bless God!!!


Amelia, Kim and Brian

Not so Ready for this Storm

Twelve days ago, our lives changed.  I am not so sure I was ready for this storm.  Over the last twelve days, we have experienced incredible peace, joy, sorrow, fear, support and love.  We have loved on Amelia as much as we could as we watched our little lady come into this world, be connected to more medicine pumps, life support and monitor machines and receive more attention from doctors and nurses than anyone should get in a lifetime.  Now, we wonder:  Are we ready for what is ahead?  Are we ready for this storm?

There have many ups and many downs.  One of the lowest points for us in Amelia’s life was after watching her be wheeled away for surgery and Kim and I returned to her empty room.  The feeling of complete helplessness overwhelmed us as we started to wait for her return.  I think that was only beat during the seconds and hours after Amelia’s return from surgery.  I do not think I can lie on the floor and get as flat as Amelia was on her bed, sedated and filed with pain medicine, following surgery.  Our hearts fell through the bottom of the basement of the hospital (from the 5^th floor) as we watched our limp little peanut on her bed as her chest rose and fell with the precision of a machine as the respirator ensured she got the oxygen she needed to continue to live.  In the days since, we have experienced many other emotions:  Her first cry following surgery and the removal of her breathing tube, the joy of seeing her first dirty diapers, excitement of seeing the first time we tried to give her a bottle to feed from and the scares as monitors start to beep when vital signs fall out of her tolerances.

We have been overwhelmed with the love and support we have been shown by friends and family.  We have had many visitors who have taken the time out of their day to provide us love and support and a meal while we have been in the hospital.  We have been overwhelmed with calls and emails.  We could never have imagined how much love we have been shown.  We have experienced people being the hands and feet of Christ these few weeks.

And yet we have a peace that can not be explained.  We were given nearly 4 months to learn and understand the condition our child was given.  We were given 4 months to prepare our minds and hearts and lives for the changes that were coming.  We were given 4 months to gather a group of friends and family who would pray for us and lift up our needs to the Father who knows all things.  We were given 4 months to learn what life will be like as we start to prepare to go home.

That preparation has begun.  We have started to learn about medicines and machines that will be at our disposal to care for our peanut.  Our Pulse-Ox pump was delivered.  We will use this machine to ensure the oxygen saturation of Amelia’s blood is sufficient to maintain life.  We received our feeding pump, which will allow us to feed Amelia when she becomes too tired to drink from the bottle.  We have an entire 3-ring binder filled with instructions and information and phone numbers for those that care and are able to help.  We have begun to learn what it will take to care for our peanut once we are home.

We have had a reality check once again.  Earlier this week, we started to get a picture of what the next 6 months of our lives will look like.  We were given a list of numbers of nurse practitioners we can call at any time with any question or concern.  The statistics prior to the CHEF program that we are enrolled in was developed was that 30% of the single ventricle babies sent home following their first surgery died at home.  The support network we are now a part of has lowered that to about 4.  Yet still, we completed an infant CPR class this week.  We have a number we can call with a trained nurse who can answer our concerns, who can provide a recommendation ranging from “Everything is OK” to “Come visit us in the morning” to “Hang up right now and call 911!”

As we look at our last weekend in the hospital and toward our first days, weeks and months home with our Amelia, we wonder:  What will the next months look like?  Yet, we charge forward with the grace, peace and knowledge that God is our comforter and will be with us.  He will provide for all our needs even before we ask.

So, right now, all we can say is, unlike the words from the song by one song writer:  We are not sure we are ready for this storm!

Brian

Amelia Joy Moody

Make sure you read the previous post (Tuesday, July 19 - Tonight We Are Waiting) before you ready this one.  We had one written that we did not get to post before birth (I hope I did not give this post away...I guess the title did of did anyway).

Sunday July 24^th (more like Monday at 1:23 am)

On Saturday, July 23^rd, 2011, Kimberly gave birth to Amelia Joy Moody.  Wednesday, Kim had a phone call from the OBGYN that her labs were slightly elevated.  We stopped by after our growth check (Amelia was measured in at 6 pounds 9 ounces by the way).  After some consideration, she asked us to come in to induce before anything serious developed since we were nearly 39 weeks.  So we did, after stopping for our last meal as a married couple without kids.  Kim started to dilate with the medicine she was given, but Amelia was not taking the medicine well and the decision was finally made to have a c section after close to 60 hours of labor.  As I waited at the doors to the delivery operation room, every time the doors opening hoping it was the call for me to come in, I was overwhelmed.  I was about to go into a room to see Kim with a hole cut in her belly as the doctors pulled Amelia from her.  The doors opened again and it was finally my turn to walk through.  I came into the room and was able to sit beside Kim as the doctors grew closer and closer to pulling Amelia from Kim’s belly.  All of a sudden, she was there and I was that useless guy in the OR – You can go see her if you want.  You can hold her if you want.  Why don’t you take her over to mommy?  All, beautiful ideas.

Soon, we were headed off to NICU so the medicines Amelia so desperately needed could be administered.  As we passed by the NICU check in office, the nurse asked for the name and time of birth.  “Moody and I do not remember the time of birth” stated the doctor.  “7:52” I chimed in, so proud that I finally contributed a worthy piece of information to the day.  7:52.  A time I will never forget as I saw Amelia, all 18 inches of her brought into this world.

Kim spent the day recovering.  I, like any strong and proud grown man and new father, spend the day…nope…scratch that, the morning…nope…scratch that from the official record too…the moment … well, if you want to know the official records will report, I did not cry at all!

In the NICU, we had to scrub.  Scrub from elbows to finger tips.  There are very sick babies here.  Suddenly the “whoppty stinking doo” was not so doo any more.  In the pod next to Amelia (that is what her little bed is called), there was a baby who was 2 weeks old…on April 5^th…according to the picture on the wall behind her.  Now, not only does a simple shot not looks so bad, but open heart surgery with an expected 2-4 week recovery does not look so “whoppty stinking” any more.  Now, the “whoppty stinking” is on me.  Wow, how fast your perspective changes.

And yet, we are still looking at a very serious surgery.  Amelia was doing very well.  The pictures of her body showed no other problems and she was responding very well to life outside the womb.  She was getting her medicine and nutrition through the IVs and she was breathing room air.  Room air.  Not oxygen.  That was great news, because her blood oxygen was high enough that she did not need supplemental oxygen.  Saturday evening, we were allowed to hold Millie for the first time.  Sunday, we got to hold her again.

Kim was recovering well and we were trying to start to pump.  In fact, as I delivered the first milk, that was when the nurses asking if I wanted to hold her for the first time.  What about when you held her at birth you ask?  That was kind of like my wedding, I argue.  You see, I do not remember that we had a cake, much less what our cake looked like or tasted like.  For Amelia, I remember that I held her, but not much more than that.  This time, I was allowed to hold her for a long time…about 1 hour.  Then, Kim comes rolling in.  (You are missing a lot of that story too, so you should ask about that some time too.  But you need to ask me.  Kim will give you the untrue version of events.)  She was able to hold Millie for about an hour as well before we head back to eat, pump, breath (the little breathing machine…I am sure you know the one), and sleep.

Sunday morning, we are able to see Amelia again.  Some of Kim’s friends visited, so I took the time to head home and shower, a task I have not completed in nearly 5 days.  When I got back, I was told I need to see the doctor, now!  The expression on my face must have been worth ten thousand words.  Don’t worry, the doctors said she may be able to move this afternoon.  I rush in to find this news is true.  The doctor is writing up transfer orders as we speak.  There was a bed that opened at PCH.  But before she moves, Kim gets a chance to try breast feeding.  They both do pretty good.  Then, Kim gets to just hold Amelia on her chest for about 3 hours.  Finally, they are ready to take Amelia.  After an hour long ordeal, we make it to our new room at PCH.  When she gets settled, I head back to gather some of my things and to say good night to Kim.

At long last I am back at Amelia’s side and I will sleep in her room tonight as she coos for me.  She is doing so well.  In fact, she made it through her first monsoon storm, complete with lightening, thunder and rain.  She protests, with vigor at times, as we try to hold her and move her.  As soon as she stops moving, she is completely happy.  Just about the only part of her we regularly have access to is her head, so we gently rub it as much as we can.  As she fusses, we rub.  Sometimes, we can get to her one hand that is free (the other is taped to a stint to keep it from bending).  She raps her little fingers around my one big one and squeezes with all her might.  Her hands and feet go from a nice pinkish red to a dark blue and a little cold – the same thing your hand does when you pinch off your arm for a while.  Then, it slowly starts to get color again.  This is all part of what happens when you have HLHS, so we are ready for it.  There are a thousand tubes (really, about 8) all connecting into eventually one lead PICC (something something central catheter) line that goes up her arm to her chest to deliver the medicine she needs.

For now, she coos softly next to me.  I always thought I knew how precious that would be, but now that I hear my child doing it, I look back and think:  I had no clue!  Our little Amelia Joy.

Jesus, be with her.  Protect her from the germs and complications seeking to defeat her.  Help her to grow strong.  Give wisdom to the doctors deciding how to proceed and a steady hand as they began to operate.  Thank you for the minds you have given us that can figure out how to treat and respond to the crappy circumstances of life.  Jesus, walk close enough to Amelia Joy that she can reach out and grab the hem of Your rob that at even just a touch, some of Your mightly healing power would flow to her to help her along.  We love and trust you.  Thank you for this precious give you have given us to look after.  Give Kim and I the wisdom and strength to raise her to know You.  Give us the patience to teach her and allow her to make mistakes and learn from them.  Protect her from the evil of this world.  Thank you for this gift, Your child.  We will provide for her, everything we can and point her to You always.

Tonight, We Are Waiting

Tuesday, July 19

Tonight, we are waiting.  Waiting for many things.  I am waiting for our next phone bill (with … um … excitement???).  This is our pay week, so both Kim and I are waiting for (and looking forward to) another deposit into our accounts (with more excitement than our phone bill, that’s for sure).  We are waiting for the summer heat of Phoenix to produce the first good Monsoon storm of the season at home in Mesa.  Don’t get me wrong, we have had some storms (did you hear about the Haboob recently in PHX???), but we have not had a good gully washer at our house yet, just dust.  We are waiting for our savings to grow, the government to fix the budget, another day.  Tonight, we are waiting for many things.

We have many friends who have recently had children or are expecting children soon.  Some have started to share stories about first experiences.  Kim read about one mom’s experience has her son received his first shots.  It was touching (and the picture proved it) as he cried with questions in his eyes to his mom for why she could possibly let some stranger put a sharp object into his arm.  Kim’s thought, though filled with joy and excitement, and a little bit of sorrow for her friend and her son, was:  “Whoppty stinging doo!!!”  (Just bear with us…you will see why shortly).

Tonight, we are also waiting for our own little miracle to join us.  The doctors, who are always straight up honest, have been telling us for nearly 3 weeks that our daughter could join us at any time.  (For those of you who have not heard, we are having a little girl.  It seems the doctors are not that good at keeping secrets.  If you don’t know that story, ask some time.)  At first, the hope was for us to last 36 weeks.  We passed that about 3 weeks ago.  The second was to reach the ripe size of 2000 grams (just shy of 4 and a half pounds).  It seems that is the minimum size needed for our first surgery.  We passed that about 3 weeks ago too.  Our last growth check showed about 5 pounds 1 ounce.  Tomorrow, we have our next growth check and Kim and I have bets on how big our little lady will be.  But for now, we are approaching 39 weeks, so tonight we wait.

We have spent the last 4 months (we can not believe we have been traveling this road for nearly 4 months now) studying and learning and memorizing the procedures and organs that will be operated on in the coming weeks.  We have been worried and scared and want to make sure we understand everything that is coming our way.  You see, for the mom mentioned above, the scariest part of her first days as a mom so far have been the first shots.  Don’t get me wrong, the birth of a first child is exciting and exhilarating along with some scary moments as you start to think about a life you will bring into the world, a life who will be utterly and completed dependant on you for everything.  For us, we are starring down the barrel of a very scary set of open heart surgeries, the first of which is the Norwood procedure (my best friend Google can tell you all about it if you want to know more).  So, you can understand Kim’s first thoughts for the simplicity of a few shots when our first shots will be in preparation for surgery.

Tonight we wait.  Kim feels kicking all the time and we get to watch as our peanut squirms, kicks, punches and rolls in Kim’s belly.  As she does, I try to play with her by pushing and patting Kim’s belly (though Kim does not always like that much).  Tonight we wait to see what our little lady looks like.  We wait to see what she likes and dislikes.  We wait for the opportunity to get to know her, to teach her and grow her in the ways of Christ.  We wait to learn about her dreams and desires.  Tonight we wait.  We wait for the news of the birth of another child into our world and for the plan to address her broken little heart.  Tonight, we wait in the grace, peace and comfort of our God, who has His hands holding our daughter, comforting her and protecting her.  Tonight we wait, with excitement and anticipation for the first addition to our family.  Tonight, we wait, in the grace and presence of God, the love of friends and the company of the strangers who have gone before us and paved the road we are walking down.

Tonight…we wait.

Where to start???

Brian and I have been sitting on “the Rock” for about 2 and a half months! The rock is Jesus and as Christians we are to stand on the rock, however, we are bearing such a burden that we have not had enough strength to stand-so we are sitting on Christ our Rock! We will not get off the Rock nor be shaken!  As you know, we found out that our little baby will be born with a heart defect.  ;o(  This came as quite a surprise to both of us!  Research shows, that we did nothing wrong to make this happen to our precious little baby.  Me, being just a human being, find myself doubting that and the enemy tries to make me feel that this is my fault.  Don’t worry!  I am now able to put Satan in his place and rebuke his attacks!  Brian and I have actually done everything right!  In fact, doctors and other people have always said that you are the prime candidate for a perfect & healthy baby! Pardon me but CRAP HAPPENS! This world that we live in is full of sin  and Brian and I are sinners, so it is just one of those stinky things that happens!

I am finding it easier to praise our Lord through these circumstances! It was a little hard at first and being only human I struggled to praise Him for a short time! BUT… My Redeemer lives, My Father gives life MORE abundantly, we are MORE than CONQUERORS through Christ and if Christ is for us…who can be against us!  God is in control and we know that His love for our little baby is so great that we can’t even imagine the love our baby is getting and feeling from Christ our Rock! My prayer for Baby Moody is that Jesus wraps His loving, healing and strong arms around our little child!

Praise the Lord for finding out now!  God has used this time to prepare us for this journey and each day we are growing, getting stronger and becoming the parents God has called us to be for this little bundle of joy!  We can’t do this alone & we need the love and support from our Lord and also from you! Thank you SOOOO much for your prayers and love! We love you and know that God our perfect Father in Heaven has ‘Got this’!

Kimmy

Our Journey Begins

April 1, 2011

This Tuesday, March 29^th, I felt my baby for the first time.  Kim has been feeling him for several weeks (we do not know the sex yet and since I want a boy, I will call him him for now).  We were sitting in our OBGYN office waiting for a “special” meeting.  Kim had a call the Friday before and the message was that this appointment was scheduled – the doctor needed to talk about our ultrasound.  The sonographer had been having a difficult time getting good pictures of our baby’s heart.  We snapped a few pictures ourselves as we looked at pictures from the weekend out with friends while we waited for our doctor, who was running a little late.  She finally came in with the news.  It appears our baby’s heart was not developing correctly.  On Monday, Kim had a message from a Maternal Fetal Medicine (MFM) specialist with an appointment scheduled for Wednesday.  Our doctor was saying something about the possibility of an underdeveloped or undeveloped left heart.  I was not paying attention.  Our journey begins.

Wednesday, Kim and I went to the MFM specialist for a more in-depth ultrasound.  The result:  It appears to be a Hypoplastic Left Heart Syndrome (HLHS), a Congenital Heart Defect (CHD) that effects 9 out of 1000 of all births in the US.  The bad news is that 30 years ago, the mortality rate was virtually 100%.  The good news (if there is such and thing with this news) was that in the mid 1980’s, doctors developed a treatment for this problem, but before we discuss this with you, we need to be sure of what we are seeing.  You need to see a Neonatal Cardiologist – can you see him tomorrow, and, can we do an amnio something or other to get a chromosomal reading to know if this is just pure luck or a chromosomal related problem?  It does not appear that way since the only organ that appears to be effected is the heart at this time, but more info is better.  Sure – the more and the sooner we know, the better we can plan.

The amnio was simple – a quick needle through the stomach and into the uterus to extract some amniotic fluid.  We watched the needle on the ultrasound.  Suddenly, the baby was aware of the needle and a hand rushes up to inquire on the foreign object invading his space.  What a precious moment as we realize that our little one, roughly 23 weeks old in Kim, has enough presence to know that something had invaded his space.

With no complications, we returned Thursday for an echocardiogram.  After insuring the only effected organ was the heart, the doctor provided the most detailed and the first confirmation of what our baby was facing:  HLHS is the prognosis.  The left ventricle was non-existent, the left atrium was small and the right side of the heart was larger than normal while the veins and arteries around the heart also appear to be abnormal in shape and size – a standard associated with HLHS.  Prognosis – three surgeries:  first at the 5-10 day mark, the second at 6 months and the third between 3 and 5 years of age.  Chances of making it through the first surgery and to the second:  about 85%.  Chances of making it through the remaining surgeries and into adulthood reduces by about 3-5% from there.  The good news:  80-85% chance of living is much improved from 0% in the early 1980’s and if our baby makes it to the first surgery, chances are he will have a somewhat normal childhood and could live long enough to see grandchildren.  That is speculation since the oldest people born with this condition right now are in their mid 20s.

Kim and I are trying to absorb the last 3 days of news.  The reality is that the doctors are likely not wrong and our baby will be very sick at birth.  Our hope for a healthy baby at birth is shattered.  The truth Kim and I hold onto is that we have a Creator who knows the number of hairs on our baby’s head before we even new we were having a baby and in the end, whether our baby lives or goes to see Jesus, God is still God and God is still in control and we will still believe and worship Him.  Our faith has not been shaken nor will it be shaken by this.  Our faith was our faith before this knowledge and God will still be God after this challenge passes (if such a time comes).  We are excited to meet our baby, to know him, to learn about his likes, his talents and desires, what he will not like and what challenges he will bring and what his personality will be.  But this we know, as for us and our house, we WILL serve the LORD!

Brian