Wednesday, February 29, 2012

Two Months Old

Aiyana is now two months old (as of Monday, actually...I'm just a little slow at getting this posted).  She had her well-baby check-up and she is healthy and growing nicely.  She smiles all the time now and once in a while she almost laughs.  Yesterday she and Ashlyn discovered the fun of old video games.  Here's a picture of the two of them playing Mario Kart 64 (OK, so Ashlyn is playing and Aiyana is intently watching...she's not big enough to hold the controller yet). 

Wednesday, February 8, 2012

Remembering Heart Surgery #6

I know that it is not uncommon for people who have lost a loved one to have a tough time around birthdays and the anniversaries of their deaths.  This is true for me around Lynnea's birthday, and the 5th of July, but those days aren't the only ones that are hard.  In fact, in some ways, the anniversaries of the days she had surgery (especially heart surgeries #2, 3, 4, and 6) and other days that she nearly died (there are too many of those instances to count, but there are a few that stand out in my mind more than others) are even harder.  The day that she died is hard to think about, but when I woke up on July 5, 2010, I knew what the day would bring; there was no fear that day -- I wasn't terrified that I might lose my baby that day because I already knew that I would -- there wasn't the same worry and tension that earlier moments, like surgery days, had brought because I had already accepted the fact that her death was inevitable, and deep down, I knew that she had suffered enough and, really, for her, this was for the best.

But, like I said, surgery days were different.  Two years ago today, Lynnea had her sixth heart surgery.  She was 15 months old.  She was old enough to know what was going on.  When we woke her up at 3am that morning and her nurse and I put her in the van (Corey had to work; since he was still a new employee, he didn't have the protection of FMLA and since we couldn't afford to have him lose another job due to excessive absences, he went to work that morning and came to the hospital in the afternoon when he had finished) Lynnea knew that the odds of this being a trip to Grandma's house were slim.  The roads were icy and it took longer than usual to get to the hospital.  When we pulled into the hospital parking ramp, she began to whine.  As we walked through the long tunnel from the parking ramp to the main hospital building, she gave us both a worried cry as we walked past the turn off for the clinic building.  She knew this meant she was going to stay.  When we got to the pre-op waiting area, she looked at me with teary eyes and desperately lifted her hands and signed, "All done!  All done!" and pointed towards the door to leave.  I told her that we couldn't be "all done" yet.

We spent a couple of hours in the little pre-op cubicle.  Lynnea screamed at every medical professional that walked past the curtain.  She gave hugs to Ashlyn when Ashlyn showed up with Grandma and Grandpa.  When the surgeon came with the consent form, he barely spoke to her (he was one of her favorite people at the hospital -- one of the few medical professionals that could enter the pre-op cubicle without her screaming) and I knew that he was worried about how this surgery would go.  Lynnea's track record in the OR had never exactly been good, so he, like the rest of us, was dreading this day.

At 7:30am she was taken to the OR.  We all went for breakfast in the hospital cafeteria.  I had biscuits and gravy, like always.  Then we sat in the OR waiting room and we waited.  At 9:03am we were told that they had started working on her at 8:56am.  At 10:30am we were told "She's on pump."  At noon we learned: "She's doing OK.  things are going fine."  At 1:30 an OR nurse informed me over the phone, "We're back on pump.  This is our third time on pump.  We're tried to come off twice now and were unsuccessful, so we're back on.  We're going to try one more time, but if it doesn't work, we're probably going to end up on ECMO.  Steve will be out to speak with you shortly."  I felt like saying, "No, don't send Steve out to give me the ECMO talk; I've already heard it.  She's been on ECMO before.  I already know what this means and I don't want to sit through the talk again."  But I didn't say that, instead I politely thanked the nurse for the update and sat back down in my chair and waited for Steve.

Steve came out to the waiting room and gave me the abridged version of the ECMO talk and asked if I had any questions.  I told him I didn't.  He assured me that the surgeon would go over everything that had happened after they were finished with Lynnea in the OR.  By this time, Corey had arrived.  We sat and waited some more.  At 6:30pm the surgeon came out to talk to us.  He summoned us back to the private conference room as he had done after each of her other surgeries.  As we walked to the conference room he turned and said to us, "You know, I've gotta tell you guys, your daughter tires me out like no other.  You have no idea.  She always gives me one hell of a time."  In the conference room he gave us the run-down of how things had gone in the OR: the short of it was that she bled a lot (and continued to bleed) and that she ended up on ECMO because her lungs couldn't handle the increased blood flow from the B-T shunt he had placed.  After he explained how things had gone I said to him, "I'm just happy that ECMO was the worst news of the day.  We've done ECMO before.  We can handle ECMO.  Honestly, going into this surgery, my only real hope was that ECMO would be the worst news of the day; I just didn't want the news that...there was anything worse than ECMO."  He and Corey both understood exactly what I was saying, and the feeling was completely mutual.

Lynnea was moved from the OR to the PICU at 7:30pm.  She was still "oozing some" which Corey and I had learned long ago was really just a euphemism for "losing her entire blood volume on an hourly basis."  She continued to "ooze" all night long.  In the morning the surgeon did a chest wash-out to try to find a way to control the bleeding.  After he finished, her bleeding slowed so that she was only losing half of her entire blood volume every hour.  By the end of the day, he had done yet another wash-out and had finally managed to get her bleeding under control.  The next day she was taken off ECMO successfully, but her recovery continued to be filled with challenges for the next three months that she spent in the PICU before finally being sent home so that we could "have some time together as a family."

Monday, February 6, 2012

Congenital Heart Defect (CHD) Awareness Week

The words are never easy to hear, whether it is from a doctor trying to gently break the news at a 20 week ultrasound, or in the delivery room shortly after birth, or in a chaotic emergency room days or weeks later..."We think there is something wrong with your baby's heart."  Those words change everything.  Hopes and dreams go crashing to the floor; thoughts of the future come to a screeching halt, and the fear creeps in -- the fear that you don't want to admit aloud...the fear that you might outlive your own child.

Corey and I first heard those words in the E.R. when Lynnea was seven days old.  We knew throughout her life that there was a very real chance that we would outlive her.  I remember the first time we spoke about this to each other.  We were driving back to the hospital to be with her after my six week postpartum check up.  We desperately hoped that this fear would never become reality, but we couldn't ignore the fact that her heart defect meant that there was a very real chance that it would.

That's what comes along with the words, "We think there is something wrong with your baby's heart."  One out of every hundred babies is born with a congenital heart defect.  This means that in the U.S. approximately 40,000 sets of parents have to hear those words, and 4,000 of those families will never get to have a birthday party for their babies.  Congenital heart defects are the most common type of birth defect worldwide, and the leading cause of defect-related infant deaths.   Sometimes these defects are diagnosed prenatally, sometimes they are missed.  Some require one open heart surgery; some require several; some require only close monitoring by a cardiologist.  All of them are very scary for the parents.

February 7-14 is CHD Awareness Week.  Awareness brings funding (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 Congenital Heart Defects), which is an important part of finding treatments for these heart conditions, but awareness isn't just about raising money.  It is also a way of increasing support for families that are faced with devastating news and challenging situations.

Awareness is also about detecting and diagnosing congenital heart defects earlier, rather than later.  When babies are born, there is a whole panel of things that make up standard newborn screening -- their hearing is checked, a heel-prick is done to check for PKU, etc.  Some of these tests, like the hearing test, are non-invasive and painless for the baby, while others, like the heel-prick hurt.  Screening for heart defects can be done with a simple non-invasive test (pulse oximetry) that causes no harm or pain to the baby.  Currently, this is not standard practice at every hospital in the U.S.  There is work being done on the governmental level to make this screening a standard part of newborn care, but changing policies takes time.  For us, Lynnea's defect was not diagnosed prenatally, or in the hospital after birth; in fact, we were sent home with her believing that we had a perfectly healthy newborn.  If I had known about pulse oximetry at the time, I would have asked for it, and her condition would have been diagnosed much sooner, saving us from the emotional mayhem of that night in the emergency room.  This is why awareness is so important.  Awareness can save lives.