Tuesday, November 30, 2010

Surgery Day 1

C's resting in the PICU. We had a bit of a concern earlier when they started to take him off bypass. He had a pulmonary hypertensive crisis and had to go back on bypass briefly to knock him back out of it. They put him back on bypass, gave him nitric oxide and he snapped out of it within 20 minutes. They were then able to take him off bypass. Shortly after they got him to the PICU he started having some irregular rhythms in his atrium and they are using an external pacemaker to control his heartbeats for now. We'll know more tomorrow, they are basically going to let him rest overnight. He's currently heavily sedated and letting the vent do all the work.

Our first nurse was AWESOME! Her name is Erin and she explained every single thing in the room. They were redoing the tape for his vent tube and NG tube and she cut a heart out of adhesive to use for the NG tube tape.. it was really cool. Its a little thing, but it made a difference. Then we ended up discussing reflux for a while and she made me feel like she actually valued what I had to say. She also welcomed all questions and, in fact, encouraged them. I liked her a lot. Tonight's nurse is pretty cool too, but not as interactive or engaging.

We had 2 hours of sleep last night and I am absolutely exhausted. I'm hoping to get some sleep tonight after I next pump.

I am mostly OK right now, occasionally I just want to run and go get my baby!  I miss him and I hate not knowing what I need to do next.  I believe sleep will provide some perspective.
I have pictures to post and will upload them "soon".

Saturday, November 27, 2010


Someday soon the acute phase of my son’s heart defect will end, and I will have a typical little boy with a really cool scar.  We’ll have a couple extra doctor visits per year and otherwise life will continue.  Maybe someday he’ll have to revisit this again, but it won’t be our world again for a while at least.  This is an incredible miracle, but it comes with a price.  Congenital Heart Defects are the #1 birth defect worldwide.  They span all races and genders, affecting between 1 in 85 and 1 in 125 births.  Yet, most people don’t even know they are a concern.  Hospitals could easily perform a simple non-invasive test to check blood oxygen levels right before they send babies home and catch about 50% of the undiagnosed heart defects, and the test takes only seconds.  With a specially trained operator and a special ultrasound, they could actually do an echo on every baby to make sure everything looks OK. The tests are neither painful, invasive nor incredibly time consuming, and they would save lives. 

The odds suggest that I, like so many mothers before me, will get caught up in the struggles of everyday life and forget how hard this time was and how important researching these defects and supporting the parents who have to live with them are.  Maybe I’ll do a heart walk once a year; maybe my son will have an extra birthday celebration on his surgery date.  But life will sweep us up and carry us far away from the immersive world of complex congenital heart defects.  Given that heart defects are the most common defect and the fact that almost everyone you talk to knows someone who has a friend, child or parent who has one, you’d think that these heart conditions would receive intensive funding and public notice.  But they don’t. 

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

I was born with one of the most common heart defects, a ventricular septal defect (VSD), 14-16% of all CHDs are VSDs.  My son was born with an Atrioventricular Septal Defect (AVSD or AV-Canal), 4-10% of all CHDs are AVSDs.  My son spends an hour to an hour and a half out of every three hours eating.  He breathes so fast that he can’t suck swallow and breathe a “normal” babies do.  Instead he holds his breath, takes a couple of swallows then has to breathe heavily for a while so that he can start all over again.  But really, he manages very well, it gets harder as he gets bigger, but he’s still gaining weight and he is happy.  Without surgery, it won’t be that way much longer.  But really, our kids don’t LOOK sick.  They laugh and play and giggle and coo.  Sometimes their skin takes on a bluish tinge, sometimes they may breathe faster than the average infant.  But most people will never be able to tell they are sick just by looking at them. 
Our kids generally don’t become pale and thin, they don’t get the characteristic bald head of a child undergoing chemotherapy.  Their hearts are sick, but no one can see it, and when they could see it, they don’t want to.  Newspapers have refused to print pictures of babies just after open heart surgery; they say the pictures are too much and would offend readers. 

Really, I’m here to tell you, heart defects are pretty damn offensive, so I’m ok with someone getting a little sick.  It is sickening, and scary and hard… We need to fund research and find better and earlier interventions to save these children.

I understand why we walk away once our children are healed.  I understand why society can’t see the illness our children are suffering from, and because it isn't visible, its easy to ignore.  I also understand that this has to change and we have to work to find a better solution for these terrible defects.  40,000 children will be born with a CHD this year, 10% of them won’t see their first birthday.  There isn’t an easy answer, but we have to somehow stop walking away once our children are healed.  CHDs are a hidden disease and we have to find a way to bring them to light.

Monday, November 22, 2010

No Seriously, we are THAT tired

Last night we finished feeding C, pumping and cleaning up for bed by midnight.  C's next feeding was supposed to be at two, but we decided to push to two thirty so we could get two solid hours of sleep.  When the alarm went off TheMan got up, made a bottle and went to the restroom.  I failed to get up at all.  I woke suddenly at four am and called for TheMan because he was not beside me and we had overslept.  I heard a terrible crash from the master bath! I jumped out of bed and ran over to find TheMan on the floor looking up at me.  He had fallen asleep on the toilet an hour and a half ago and when he tried to stand he found both of his legs were asleep.  He could feel nothing at first, then had to suffer through pins and needles, we had to toss the bottle of breast milk since we had already fortified it. 

The situation was disconcerting then, and completely amusing now. 

Monday, November 15, 2010

The world of miraculous modern medicine

It’s strange how when something monumental is going on in your world, you feel like the entire world should stop and acknowledge it. I see famous actors sponsoring causes and I want to call them and explain that they should REALLY be talking about heart defects. They are the number one birth defect and no one is talking about them! My son’s surgery has been scheduled for November 30th. I’m currently immersed in the world of high end medicine. My days revolve around capillary refill rates and tachypnic breathing. But the world around me continues. I’m living in a world where I see friends’ babies die and can only stand silent witness and support as best I can. Even the people who come in to help us out can’t really understand because they go home and sleep and live a life outside of this world, we are never outside this world.

We have at least 1 doctor appointment every week. We have a pediatrician, cardiologist, a gastroenterologist and a urologist in addition to our pediatrician. Our insurance company has assigned us a special care coordinator who is also a nurse. Her job is to ensure C gets what he needs when he needs it and ensure we are not overwhelmed by bureaucracy. I always thought that you had to go to war with your insurance company for every procedure when you or your loved one was sick. The media fosters the idea that the insurance companies are out to find ways to let you die so they can keep more money. So far I have found that to be totally untrue. We have a home health nurse who comes weekly to check C's weight gain and make sure his O2 sats are still close to 100%.

I now know there are two kinds of pharmacies and that the big stores like CVS aren’t really equipped to meet all drug needs, I never knew that all pharmacies couldn’t dispense all drugs. We found out when we walked into the pharmacy and handed them a handful of prescriptions and they said it would take 4 days to fill it. The prescription in question was for salt water, very specifically formulated salt water, but salt water nonetheless. In case I’m not the only person who didn’t know, there are compounding pharmacies which can make drugs and non-compounding pharmacies (like CVS and Walgreens) who can only dispense what has already been created.

When you go into the hospital the world narrows to that room in that time. There are no days and nights, just 12 hour shifts and 4 hour vital checks. Monitors beep and leads fall off and you learn to be nonchalant about idiosyncrasies that can panic even seasoned nurses, because for your child it’s normal. My baby breathes two to four times faster than the average baby at all times. I’ve had fights with ER docs about it and watched nurses who take vitals, stiffen and start to quietly panic until I tell them it’s OK. It’s a relief to be at the cardiac clinic, because there, they don’t even blink when his respirations are in the 70s. He’s a cardiac baby and he’s awake. We get excited when his respirations are in the 50s because that’s amazingly low for him. It’s going to be very strange for me when I can’t check on my son by watching him breathe from across the room.

I’m constantly exhausted now, but I wonder what I’ll do with my time all this is over. This is not what my poor husband signed up for. He loves our son, but the amount of work and coordination boggles the mind. We should be able to get a solid block of sleep by now. We should be bummed the off days when the baby wakes up a couple of times in the night; instead we wake him up every night to feed him. I wonder if he’ll still be sleeping through the night once he’s not running a marathon all the time. My pediatrician looked at me and said “soon, you will have sleep”. I know that well babies are not this exhausting, but I’ve never had one, so I can’t imagine it.

But mostly, I’m scared, I know he’s sick in my head, but he looks fine to me. He’s getting more tired and this is getting to be more work for him every day. But the thought of handing him off for surgery is terribly frightening. My baby is going to have open heart surgery and right now that is the scariest thing in the world.

Thursday, November 11, 2010

The Longest Day Ever...

Sorry I haven't been posting, I think we are slowly wearing down a bit.  I need to get back in the blogging habit so I can keep

I have been living the longest day ever.  It started at 3am on 8/9/10 and continues through today.  This day is broken up with naps that span at most 2-3 hours before I'm up for another hour to hour and a half doing "stuff" Pumping and feeding baby and giving medicine.  But what I most certainly don't get is sleep.

On Monday, we went to the pediatrician and got a set of shots.  Usually these shots are given at 4 months, but we'll be in that 6 month window where we can't have any vaccinations by the time he turns 4 months old.  I started to wait until next week to do the shots because we're risking having to redo them if they are to close together. It ends up that we're lucky I did not do that.  They wanted to do surgery closer to four months instead of six.  They said December would be the month for surgery.  So somehow, it knocked me for a loop when the surgery date was set for November 30th.  I know its only one day, but I REALLY expected to have the word December in there somewhere.  I was very disconcerted and I am very anxious.

Tomorrow we meet the surgeon and get another echo so he can get the pictures he wants to have for planning.  I have lots of questions to ask and I hope getting those answers will help ease my anxiety.  I'm back on heartburn meds, so I know I'm actually pretty anxious.  I'll know more about the specific repair and how long we're expected to be in the hospital after tomorrow (which is actually later today since its 1:30 in the morning and I'm up expressing breastmilk for the 4am feeding).

I stuck C's rattle in his hand earlier today and he tends to hold onto it for a while if we can get a good grip on it.  He's not really grabbing it on his own.  He's a little behind on the tummy skills since we can't really get all the tummy time in that we are supposed to.  Our goal is half an hour a day.  Eating usually takes an hour and a half out of every three hours and exhausts us.  Then our tummy is usually upset for another 40 minutes after that feeding and C must be held upright... so we're 2 hours and ten minutes in before anyone can do anything for themselves such as eat or go to the bathroom.  Then 50 minutes later, we start all over again.  Its nice when we dream feed because feeding him goes faster, but then he's asleep and we still can't do tummy time (plus we still need to hold him upright for half an hour).  The pediatrician says not to worry about it, he's going to get pretty behind after surgery anyway, but he'll catch up quickly once he doesn't expend the energy of a marathon runner just to be awake.

I've posted a couple of videos on Youtube, but only one doesn't involve having to view it sideways.  Its dorky, but I still enjoy watching C smile.  I have no idea why he likes having his mouth tweaked but he REALLY does *grin* http://www.youtube.com/watch?v=LjQeTTDx6qA

I've been pumping for 40 minutes now, so I believe I shall be allowed to go back to sleep.  I hope to finish another blog post I've been writing for a while soon and have it online by the end of the weekend.