CHANGE

2 weeks ago, I 'rounded' with the menagerie...and everything looked great.  Music to our ears.  With the exception of my now weekly sonos, life has been trucking along as normal.  Although our baby's condition is not miraculously improving, it's certainly not deteriorating and this is the best news of all.  So when I dragged my mother to the sonogram yesterday instead of my usual companion, I thought it would be much of the same but I was terribly wrong.  The amniotic fluid has seriously decreased and is now at a very low level of 8.  To put it in perspective, it should be at around a 17 and my doctor said that if it were to get to a 5, he would have to deliver the baby.  Once I wrapped my brain around that, I realized that it's a much more serious situation than I thought.  See, I've always been one to think positively - so much so, that even when facing a very serious situation like our daughter's, somehow everything would turn out okay.  That she would get through her surgeries and progress through life with nothing more than sporadic appointments to check on her heart's function.  That her life - and ours - would assume a 'normal' feel.  Yes, it may turn out just like that...or it may not.  Nonetheless, yesterday's 'diagnosis' was not at all expected but I guess that's the nature of the game now.

Because of the low amniotic fluid, I am officially on bedrest.  Yippee!  Let's all shout for joy!  Although despite my very long list of things to do from my bed or couch, I am having a hard time being excited.  I'm prepared to not get to do the usual 'mommy duties' with Patrick Jr. once the new baby arrives, but I'm not prepared to give them up now.  It's the whole reason that I stay home: to be a mother.  To mommy my baby.  Some people have huge dreams of ruling the world corporately and others, like me, have huge dreams to mother her babies.  By being given the gift of staying home full time with my son, I have tasted the good life that I've always dreamed of.  I know that everything will change once we welcome Baby Girl and that's okay.  I just wish that I could still squeeze as much time being Mommy to Patrick in my usual fashion before she's born.  That's all.

This is more than "just bedrest."  One possibility is that her kidneys are beginning to fail - a sign that her body is shutting down because it can't support life.  Or that they are other big issues like with her placenta or heart.  Because of the nature of her situation - her high risk - words like "death" and "shutting down" are not necessarily uncommon to hear in conversations with my doctors.  Fortunately, they are very down to earth and don't exaggerate the situation.  For now, though, I'm able to navigate between bed to bathroom, couch to bathroom or couch to bed until my next sonogram on Monday.  We'll reassess the level of amniotic fluid and go from there.  My prayer is that it has bounced back and our sweet baby can have more time to float around in a space where her body knows no hardship, no pain, no struggle.

HAS THERE BEEN A MIRACLE YET?

Right now I'm listening to my 20 month old babble to his mobile (yes, he still has one in his crib!) while I contemplate exactly what to type today.  The last 2 days have hosted our routine visits with our docs.  It's refreshing to share that we have had great visits.  During my ultrasound, I said this to Dr. Weiss and he paused as if confused that I was so upbeat and then agreed.  Yes, our daughter has one of the most severe heart defects to date, however outside of this, everything else is great.  God is good.  

We kicked off our visits with Dr. Laird, the pedi cardi.  She said that the right side of the baby's heart is developing as it should, as well as the aortic and mitric valves (which control bloodflow) - all HUGE praises.  Remember, if any of those take a turn for the worse, our baby will have a very grim prognosis.  Too, there is no sign of leaky valves or fluid build-up in the heart which is another HUGE praise.  Her lungs look great and thanks to Dr. Weiss' ultrasound report yesterday, so do the rest of her organs.  She is measuring right on target for 26 weeks and is still proving to be very active.  You should probably start referring to me as Dr. McKittrick because I could have told you that. 

I also managed to successfully endure the glucose test.  Although I don't have gestational diabetes, my biggest stress was that I couldn't eat or drink before the test.  Hello.  Have you met me before, Dr. Oliver?  I don't miss meals, even when I'm not preggers.  Add in feeding my toddler breakfast and administering snacks all morning, and it makes for an almost very cranky mommy.  Thankfully, I was able to have my tall half caff soy latte and Kashi bar by 10.  I've lived to tell about it...again.

Specific prayer requests are...

-that her organs continue to develop as they should, especially the right ventricle of her heart and of course, her lungs.

-that her mitric and aortic valves continue to develop and don't start to leak or for fluid to build-up anywhere in the heart.

-that she may continue to be happy in my belly until 39 weeks!  no early arrival please!

Another specific prayer is to the memory of Blessed Pope John Paul II.  After his death, it was declared by the Vatican that a French nun's neurological disorder had been miraculously cured after she prayed to the memory of John Paul.  Vatican policy requires that a miracle, usually an unexplained healing, be officially attributed to the intervention of a deceased person before he can be beatified (recognition of the deceased person's entrance into Heaven and capacity to intercede on behalf of individuals who pray in his name.)   A second miracle is required for the final step to sainthood, which is canonization.  So if you feel so moved, please pray that Pope John Paul II intercedes and heals my precious baby.  Pray that her heart is restored to health.  During the echo, I asked Dr. Laird, "has there been a miracle yet?"  Although not this time, it may be the next.  Please pray. 

WHAT IS HLHS?

Between visits with various doctors and reading our 'homework' (material from said docs), we have a lot of information on hand regarding our sweet baby's heart.  Depending on how you look at it, there's some good news and some bad, but overall we have hope.  I've tried to break it down to the nitty gritty so as to avoid a final exam type of explanation.  Here's to hoping that I haven't butchered it too much.  Feel free to ask any questions, as I know we've had a million and one so far.

Hypoplastic Left Heart Syndrome is a congenital heart defect.  Most of the structures on the left side of the heart are small and underdeveloped.  This is a problem because this side of the heart pumps blood to the body which means the body can't get the appropriate amount of blood needed to support life.  A baby left untreated will become very sick after birth and if left untreated will not survive.

Essentially the 3-step surgical process will take a patient with a single functioning ventricle and create a heart that is able to support her long term.  The first surgery is performed in the first week of life, depending on the baby's specific anatomy.  The goal is to create a way to increase blood flow to the lungs via a "shunt."  This is often the most stressful surgery for a number of reasons.  Technically it is challenging because of the small size of the baby and her heart.  Too, newborns are physiologically more fragile than older children.  Some babies may require surgery on birth day while others are stable enough to wait until day 4 or 5.

The second surgery (a bidirectional Glenn shunt) is performed at around 6 months.  Again, timing is based around baby's specific condition, ie oxygen saturation levels, etc.  After her first surgery, her body will be at around 80-85% but by the time of her second surgery, she will be at around 70ish%.  Healthy heart people operate at 100%.  This operation allows for the passive return of blue (deoxygenated) blood, coming back from the upper part of the body, directly into the lungs. This is the first step at in lessening the workload on the single ventricle (right).  It significantly reduces the amount of blue blood that the single ventricle has to pump.

The third surgery (Fontan procedure) occurs when the baby is around 3 or 4 years of age.  During this operation, the heart achieves a normal workload.  In addition, the heart is appropriately septated.  In other words, the red (oxygenated) and blue sides of the heart are separated from each other and there isn't further mixing of blood.  Most patients have normal or near-normal oxygen saturation.  It also seals off any open communication between the blue and red sides of circulation.  In this way it significantly lessens the long-term potential complication of blood clots passing from either side.

She will also have at least 2 other surgeries - heart catheterizations - which are performed before each major operation to 'check out' the heart so there are no surprises during surgery.

The long-term results of this surgical process are still unknown as the operation has only been done commonly for the last 15 years or so.  The oldest surviving patients are in their mid 20s.  Whether this form of heart circulation will last for a lifetime is yet to be determined.  However even in this short time, enhancements have been made to the actual surgeries.  We are very blessed to be in the year 2011 and having options like this surgical process versus being sent home to wait.

Most children will reach adulthood in good health.  Some children will need other procedures such as a pacemaker and some will need a heart transplant at some point in the future.  Children are restricted from competitive sports and demanding physical activities but can otherwise do all the things that children enjoy doing, as well as enjoying a good quality of life.  So we don't have an Olympian on our hands, but that's okay...Mommy's not either.

MATTERS OF THE HEART

We met with our pediatric cardi and got to see our sweet baby girl's heart. She is looking great! The right side and all of its important parts look healthy. PRAISE. And as expected, the left side structures look the same. There is still some blood flow which is a good thing. We pray specifically that the blood flow is able to continue through the left ventricle and that it will GROW. According to medicine, it is unlikely, but God has healed the blind, so the impossible can certainly happen.

As usual, our little bit was a busy body, so it was hard to capture the images of her heart at times. We watched her pull both knees up to her chest only to then kick with all of her might. It was great to watch it on the screen as well as to feel it. And later, we got to see her PERFECTLY PRECIOUS baby feet. Warm my heart.

Things seem to be picking up now but our appointments are still about 3-4 weeks apart. Not much changes during pregnancy so we will take this 'lull' in developments. Specifically, we can pray for the following things:

-for the left ventricle of her heart to grow.

-for the right side of her heart to continue to be healthy so it can support the left side. it will become the real hero of her body post birth.

-for the rest of her organs to continue to be healthy, because compounding her condition with additional problems would be life-threatening.

-for her lungs to continue to develop until 39 weeks when she is delivered.

As always, thank you for praying for our baby...and our family. We pray for peace beyond understanding and know that through the power of prayer, miracles do happen.

NO NEW NEWS

In terms of Baby's development, there is no new news!!  PRAISE THE LORD.  We had a sonogram today at 21 weeks and she is looking good, according to Dr. Weiss, our maternal fetal medicine specialist.  Her measurements were normal as was her beautiful-sounding heartbeat and organ development (besides her heart.)  She is the size of a carrot this week and I feel her poking around inside all the time.  Perhaps from habit, I find myself looking down as if to see the faint imprint of a foot.  Soon enough, I'm sure.  

Her heart looked the same.  We'll get a better, more detailed look on Monday when we have an echo-cardiogram done.  We'll also hopefully get to understand a bit more about her anatomy specifically.  I look forward to this so that we can pray specifically for small miracles in its development.  

We truly feel carried by your prayers and have since we've shared our news.  It's by God's grace that we are so at peace.  God's plan is a good one, despite it being a little different than what we may have "planned" for ourselves.  Trusting in Him gives me peace knowing that I don't have to play event planner, because He already is.  In retrospect, I realize that although I truly believed God was in control of my life, that I had "let go and let Him" take the reigns, that I hadn't quite.  It was when I walked through darkness and truly surrendered, that I had finally let go.  And what a liberating feeling it really is.  Liberating in the sense that no matter how much pain I may suffer, there is always hope.  There is always peace.  There is always God.  

THE MENAGERIE

it's only fitting that we introduce this blog to the menagerie of doctors who are now responsible for the well-being of me and our sweet baby.  currently we are at 5 and I'm sure that it will only increase.  due to our numbers, i'm affectionately referring to them as the menagerie.  in no particular order here are our heros: our obstetrician, maternal fetal medicine specialist, pediatric cardiologist, geneticist and the ever-important pediatric cardi surgeon.  we have been handed to each marked 'fragile.  handle with care.' and each doctor has done just that.  we know that the road of finalizing our team of doctors is not a short one but can rest assured knowing that ultimately we are in the care of God.

it was only a short while ago when our world changed in an instant.  we went from a routine pregnancy to non-routine in a nanosecond.  the ultrasound that we had gone to in hopes of hearing one of our doctor's famous early gender guesses, turned out to reveal a large mass of fluid around our sweet baby's head.  often linked to a chromosomal abnormality, we underwent the test to find out which, or hopefully none at all.

once we found out that our baby had turner's syndrome, we started waiting for the mass of fluid to either resolve or grow.  fortunately in our case it resolved because had it lingered, it would have wreaked havoc.  truly a praise.  next was to wait until her organs were developed enough to check for abnormalities.  and now after finding out that she has hypoplastic left heart syndrome, we wait to see if the left side of her heart will grow a tiny bit more.  every little bit helps.

there are a lot of things that run through a parent's head when faced with this kind of news.  it's not exactly what i had expected to be living, although i know that this - the waiting - is the easy part.  who knows where it goes from here, but we know that a new kind of wait will start once she's born.  that's when the true fight at life begins for her.  it's when her heart is responsible for itself and i can no longer support her.  it's when our life will change forever as our family attempts to navigate a world of unknowns.  but while there is so much uncertainty, we know that the Lord is our firm foundation, no matter what the road ahead brings.

we have hope for the future...hope for her heart...hope for her life.  we pray that He gives her the strength to fight her fight for life and for the wisdom of the menagerie.