Tuesday, June 11, 2013

Where Do We Go From Here?

The Pregnancy

According to our doctors this pregnancy should go normally.  I say should because if there is an exception to that rule, I now feel like it's me.  With HLHS occurring in approximately 4 in 10,000 births, Jeff and I are contemplating buying a lottery ticket.  Instead of seeing a normal OB doctor, I now see a Maternal Fetal Specialist for my appointments.  (Hello 45 minute drive and $50 co-pay.  ugh...)  I have my second appointment with him this week.  I'm not sure exactly what will happen at each appointment, but I assume I will be doing an ultrasound at each appointment with him.  When I called the office today to see what they would be doing at my upcoming appointment, the nurse (or receptionist?) said they would be "looking at the heart."  I had to laugh and hold back a sarcastic comment.  So I guess I'll update after that appointment.

We also are very fortunate to get to visit with a Pediatric Cardiologist throughout my pregnancy.  I consider this such a blessing because he is awesome.  And he can answer so many questions for us.  He is the one who cares for these babies after they are born, so he knows a little bit more about what our future holds.  At our last appointment with him, he told us that our baby boy has another anomaly on top of HLHS, which is Total Anomalous Pulmonary Venous Return (TAPVR).  This means that his pulmonary veins, which connect the lungs to the heart are not formed properly.  At my next appointment with him he will be able to determine if these veins are obstructed or unobstructed, which will determine when our baby will need his first surgery.  

Delivery

We don't know much about this day.  When I asked the doctors about it at my first appointments, they said we could discuss it more in the future.  I've heard that during week 25 of my pregnancy is the best time to see the baby's heart and what we're dealing with.  Right now I am 24 weeks, so hopefully after next week we'll have some more answers.

What we do know is that heart babies recover better from vaginal births as opposed to c-section births.  So I will hopefully be able to have a normal birth.  We don't know yet where it will be or when.  From what I've read about other people's experiences with this, I would assume that I will be induced so that all the right people are in all the right places when he is born.  Depending on his TAPVR, he may need surgery immediately, but they are hoping to wait until day 7 or so if possible.  He will go on medication right away to keep his ductus arteriosus open.  This is a hole in every infant's heart that helps with circulation in the womb. After babies are born this hole closes naturally, but keeping this hole open will keep our baby boy alive.  (The more I learn about this whole thing, the more amazed I am that someone knew all this and figured out how to make it work!)


So until delivery day I am a ticking time bomb.  Just counting down the days until our life changes in a huge way!

After Delivery

After the baby is born he will be in the hospital for a while.  His first open heart surgery (the Norwood) will take place within the first week.  After that, he will be in the hospital recovering and learning to eat.  This can last anywhere from 4-8 weeks.  Some babies are put on feeding tubes (in fact, that used to be the norm), but our cardiologist said that we will really try and avoid that as much as possible.  It causes more problems down the road.  He said that kids on feeding tubes will often lose their sucking reflex and the ability to close off their wind pipe when eating.  So we want to avoid that by giving him a binky as much as possible and trying to nurse him right away, even if it's just for practice.

Going Home

This is what we are aspiring to!  Not every HLHS baby makes it home.  I know we need to prepare ourselves for that realization, but I am also so hopeful that we will make it this far.

From what we've heard, this is the most fragile time in these babies lives.  From this point until his second open heart surgery (the Glenn) which should take place 4-6 months after the baby is born, we will be the super-paranoid parents.  But for good reason.  A simple cold can put him back in the hospital and cause numerous complications including death.  From what we've heard of other's experiences we can expect that he will not be allowed in public (church, grocery store, park, etc.).  We have also heard that anytime we are in public, after we get home we should change our clothes and wash our hands before interacting with the baby.  I've heard others say that they are to limit the number of times they open their front door and be very, very cautious of how many visitors they allow inside.  And we will be doing all of this from November-February... right in the heart of cold and flu season.  Yay.

According to our cardiologist, our baby boy should not have to be on oxygen or on a feeding tube when he comes home.  But I've heard from many others that there is a good chance he might be.  Especially because we are at such a high altitude.  We have heard that we will be monitoring oxygen levels constantly and weight.  We will need a hospital-grade scale that can measure super small increments to see if the baby is gaining or losing even a tiny amount of weight.  As scary as it sounds, our doctors have assured us that all of this will give us peace of mind.  We will know exactly how he is doing and exactly when something is not quite right.  I guess that's a good thing.  After his second surgery, life should be a bit more stable.

The third open heart surgery (the Fontan) will take place anywhere between 3-5 years old.  After this surgery, life should go on "normally."  It's very difficult to say what life will be like after this point, but other HLHS kids that I've read about are doing very well.  They are able to run around like normal kids and play sports with their friends.  They may tire more easily than their peers, but they don't have to be afraid to push themselves.  They don't have to live in a bubble.  We are hoping for the best for our baby boy's future.

3 comments:

  1. Laura, I am so impressed by your blog and your calm and practical descriptions of everything that is happening. I appreciate the news and am hoping for the best for you and your family. Last year I read a book called, "Super Immunity" by Dr. Joel Fuhrman which discusses how not to get sick with every little virus you are exposed to. This sounds like it would be a good thing to read and practice so you and Jeff stay healthy around your new baby boy.
    Now that we don't eat animal products, Jim and I don't seem to get sick. I came down with a cold after my Dad passed last year and that's it for the 2 1/2 years we have been on a plant-based diet (for what it's worth)…..

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  2. One thing someone said to me once and I feel like saying to you is that no one really understands or will understands what it's like to be you. We don't have the experiences you are having and will probably never understand your day-to-day as a mom. Having someone say that to me was oddly comforting. I know it's hard now and it's going to be hard then. All I can say is that I love you so much and I want to help you in any way I possibly can. If only to say, "Oh, man, I have no idea how you do it," or, "I would never be able to do what you are doing." I don't know if comments like that help. You are doing awesome by finding out all you can and preparing. Knowledge is power and you are giving yourself, Jeff and your baby boy the best possible chance at success.

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    1. Thanks Christy. Hearing those things is oddly comforting, as you said. We appreciate every single bit of support we get.

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