Introducing: My Beautiful Daughter and Her Very Special Heart

I’ve thought about sitting down to write this post about a million times, but I just couldn’t stop crying long enough to actually do it.  I’m crying right now just thinking about it, but I’m plowing ahead.  Here is her story:

 

On Monday, January 21, 2013, at 11:26 am, my beautiful daughter, Olivia Noelle, was born.  It was single-handedly one of the most spectacular moments of my existence. 

 

 

When Luke was born, I was bone-tired from being in labor all day and scared TO DEATH about having an emergency c-section.  He didn’t cry right away and they took care of him in a part of the OR that I couldn’t see and then after letting me give him a quick kiss, they whisked him away to the nursery and I didn’t see him for hours.  (Luke if you’re reading this sometime later in life, you know I love you like crazy, buddy  – I’m just saying that your delivery was different, that’s all.)

 

 

But with her?  Ohhhhh, it was miraculous.  Thanks to a different hospital and different philosophy of birth experience, I was able to watch everything about her first moments – I watched Chris cut the cord, I watched them clean her off, I even got to hold her on my chest in the OR with the help of the nurses (because I was shaking so badly). 

 

 

This girl made my heart want to burst.  I loved Luke from the beginning but I didn’t feel bonded to him right away (I think due to the stress of the situation – again, sweetheart, you know I love you!).  But with Olivia I felt this overwhelming love and gratitude and just all-encompassing peace that our long-awaited-for baby was finally here. 

It was amazing. 

 

 

The nurses described her as “perfect” – her 2 Apgars were 9 and 9, she had a beautiful rosy glow, and no apparent physical disabilities whatsoever.  She checked out fine every time they looked her over.  So for one blissful period of 24 hours, that’s what we believed.  That we had been miraculously given a perfectly healthy daughter, after the scare of an ectopic pregnancy at 6 weeks, being told she might have Down Syndrome at 13 weeks, and me getting shingles at 35 weeks pregnant. 

 

 

We were both totally mesmerized by her.  I think I told Chris at least 5 times over that first 24-hour period that “I never want anything bad to happen to her, ever.”  From 11:26 am on Monday to about 1:00 pm on Tuesday, we were pretty much blissed out.  We felt so blessed and lucky. 

Then at about 1:00 one of the pediatricians from our local practice came in to do a routine check on Livi.  He finished and I very happily and confidently asked, “So everything’s fine, right?”  (Remember, she’d been checked by nurses every few hours of her life so far and had repeatedly been described as “perfect.”)  I was totally floored when the Dr. said, “Actually, I hear something.”  He told us he heard a heart murmur, but not to worry because lots of kids have them and they often close up naturally.  He ordered some ultrasounds and Chris went with the nurse down to the ultrasound room for about an hour.  (My nurse told me to stay in the room and just take it easy and rest.)

I cried but Chris reassured me not to worry and told me about someone we both knew who had a heart murmur and is basically healthy as horse now.  I thought of that friend and felt calm and told myself it would be fine.   When they finished the tests, they let us know they were sending the results to Yale-New Haven hospital for review and we’d probably know in the morning. 

Chris went home at about 4:00 to spend the night with Luke since kids weren’t allowed in the hospital due to flu season.  We had agreed beforehand he would do that, both for Luke’s sake and because Chris had had a bad cold and we wanted him better as soon as possible for Livi’s sake - so we knew a good night’s sleep was necessary for him. 

My parents, my aunt, and my grandmother all came that early evening.  We talked and laughed and I really enjoyed having them.  We talked about Liv’s heart murmur but we all agreed it would be fine and honestly I wasn’t thinking about it much.  My aunt took my grandmother home, and then my mom had to leave for a hair appointment, so my dad stayed with me for a little while longer, just to keep me company. 

And then abut 6:00 pm, everything went downhill fast.  Three nurses came into the room at the same time, and one of them touched my arm. A nurse I didn’t recognize said, “Jessica, we got the results back from Yale, and I need you to know it’s a lot worse than we thought.  You need to be prepared that your daughter might have to be transferred by ambulance to Yale tonight.” 

And my world stopped and simultaneously started spinning all at the same time. 

They told me they were taking her down to the NICU and the Dr. there would talk to me and I could come down in 15 minutes once they’d hooked her up. 

And then they left with her and left me with information that my brain wasn’t really processing.  My daughter was going to the NICU.  She might have to leave me tonight.  By ambulance.  She had big problems with her heart.  The heart is a vital, huge, crucial, major organ.  This was bad.  This was horrible. This was horrifying.  I will forever, ever, ever be grateful that my dad decided to stay with me that night.  I can’t possibly fathom going through all of that devastating news alone.  I remember crying my eyes out on his shoulder, and then we got on the phone because we knew we needed people on our side.  I called Chris immediately and my dad called the prayer chain for his church.  Chris called his parents soon after hanging up with me and got the prayer chain started at his parents’ church.  He also called our small group, who happened to be meeting that night.  Immediately we had dozens of people praying for our situation. 

We walked down to the NICU – and let me just say that nothing prepares you for seeing your child hooked up to machines and monitors.  It is not a part of the hospital I ever wanted to be in – ever. 

The NICU Dr. came to talk to us and let us know that Olivia had been diagnosed with “Tetralogy of Fallot” – a congenital heart defect that involves 4 problems in the heart.  One of those problems is a hole in the heart, which the pediatrician had correctly heard – except Olivia’s can only close with surgery.  The other problems involve her aorta being in the wrong direction, her pulmonary valve being too small, and one of her ventricular walls being much thicker than the other one. 

The whole time, my head was totally still spinning and I couldn’t stop crying.  Here was my perfect, rosy, beautiful daughter and I was being told that she had all of these very serious problems.  It was incomprehensible to me – not to mention she’d been diagnosed with something I’d never heard of and for pete’s sake couldn’t even remember how to pronounce. 

We waited and waited – all the while expecting her to be transferred to Yale.  And here I was only about 32 hours out from having had a c-section…I could barely walk, much less be discharged to go be with my daughter.  So if she went I wasn’t going to be able to travel with her.  I just begged God over and over to keep her at our hospital so I didn’t have to leave her. 

After about 2  hours, the Dr. said that based on her stats and how amazing she was doing (her oxygen saturation levels in her blood remained at 100%), she was going to be allowed to stay here for the night…but that a team would probably come get her in the morning to bring her down to Yale.  I thanked God for that and called Chris immediately.  My dad left and I stayed with Olivia a little while longer before heading back to my room for the night so I could try to sleep since we had no idea what tomorrow would bring. 

 

 

And so I went back to my hospital room, completely alone, with my baby down in the NICU and my husband at home.  It was basically the worst night of my entire life.  I have never felt more overwhelmed with sadness or more utterly alone.  (I wanted Chris more than anything in the world at that point, but by this time it was about 10 or 10:30 at night and I knew he was fast asleep at home.  I definitely could have called him, but I decided that the best thing for our family would be to let him sleep since we needed him to get better quickly now more than ever.) 

So I called my good friend whose children have had 2 heart surgeries, because I needed to talk to someone who knew what I was feeling.  Then I called Lindsay and talked to her for a while.  And then I was just alone in the dark, crying out to God.  I posted on Facebook our urgent request and the e-mails and comments and messages started flooding in.  That helped SO much – to know that people were praying.  I can truly say that sustained me through the night.  That and the song “Not For a Moment” by Meredith Andrews…I played it over and over and over again. 

I tried to sleep, for Olivia’s sake.  I really did.  Every time I woke up, I would check the tablet to see who had commented to let me know they were praying.  At 5:30 (Wednesday morning now) I couldn’t take it anymore and asked to be wheeled down to see my girl again.  I stayed with her until Chris came at about 7:30 after dropping of Luke at my parents’.  I can’t even describe to you how awful I looked that morning.  No kidding, it looked like I’d been stung by hornets repeatedly around my eyeballs.  They were SO swollen and puffy from no sleep and from crying all night long.  And Chris didn’t look much better. 

 

{Thursday afternoon in the NICU – after a shower and the puffy eyes had *almost* gone away}

And now I’ll try to make this faster!  The Dr. told us she was doing so well she wouldn’t have to be transferred and could stay at our hospital’s NICU (double praise, thank you JESUS!).  We would both be discharged in the morning (Thursday) and travel down to Yale in our own car (no ambulance, hooray!) to meet with a pediatric cardiologist there.  We stayed with her all day and held her non-stop, thanks to the extra-long cords that were monitoring her.  {Although let me just say that one time I moved her and the NICU machine started alarming and I saw something flat-line on the screen.  I thought for sure she was having a heart attack and I had caused it – the nurse came running over to turn the beeping off and just told me I’d bumped the monitor and it happened all the time.  Scariest moment ever! It happened a ton more times after that but that first time was horrifying.}

 

{So happy here because we’re about to be discharged! 
And the nurses wrapped her in that girly quilt
and tied a little bow in her hair – I about died from the cuteness!}

The next day {Thursday} we were both discharged together and traveled to Yale.  She had an EKG done and then we met with her fabulous doctor, Dr. Fahey.  He listened to her heart and looked at all the results and confirmed that she did have Tetralogy of Fallot.  He explained it more in detail to us and let us know that we were definitely facing surgery, most likely at 3 months old.  Because her condition was one of the milder forms of ToF (again, thank you Lord!), she would “only” need one surgery at 3 months (some children need upwards of 8!) and then possibly another one between 8-12 years old if her pulmonary valve was too small to grow with her (and that can only be determined during the first surgery). 

 

{Chris holding Livi while we waited to see Dr. Fahey at Yale}

He assured us that her condition was totally common and very treatable.  He told us that they do several ToF surgeries every month and that these surgeries are “bread and butter” to them.  We learned that she might start to decline a little (as in, her blood might not oxygenate as well over a period of time), but it certainly wasn’t that she was going to turn blue in the middle of the night on us.  She would be monitored repeatedly and her heart would gradually show signs of distress.  In the meantime, though, we don’t have to treat her any differently than any other baby.  He told us repeatedly that once her surgery takes place, she will live a healthy, active, normal life.  I think his exact words were “she can play high school field hockey if she wants.” 

So we got in the car feeling oddly encouraged.  Here we had just learned she would need surgery before the summer came but we had learned that it wasn’t fatal and wouldn’t impact her future quality of life.  We went to pick up Luke from my parents’ house and went home to try to start our lives as a family of four. 

Definitely not how I imagined it, you know? But God knew this would be our story. 

 

 

So here we are.  My daughter has seen her pediatrician 3 times and Dr. Fahey 2 times, all before 3 weeks old.  We’ve gotten a crash course on the heart and say things we never have before, like “pulse ox” and “ventricular septal defect.”  Each day we live with knowing that her surgery is coming and we will have to walk through that.  (She needs to be approximately 13 pounds, so they predict around 3 months old, which puts us at the end of April.) We’ve prayed harder than we ever have before and have learned just how many people are supporting us and continually covering us with prayer.  We’ve had friends tell us their entire churches are praying for us (still).  We had multiple friends post on their FB walls about Olivia and had dozens of people we never met write that they were praying for us. 

We’ve learned that we are the lucky ones.  Some babies don’t survive ToF – their blood never gets enough oxygen.  Some babies, as I said earlier, need multiple surgeries to repair their hearts.  Our girl just needs one. 

 

It’s horrifying and absolutely nerve-wracking for me to think about my precious little girl getting opened up in the OR and having her heart cut open.  I let myself think about it for a little while and then I stop – there’s only so much my own heart can handle.  We pray earnestly for a miracle but as my father-in-law put it, “Sometimes God heals completely by using doctors.”  I was really encouraged by that thought.  God is NOT forsaking us by letting us go through this trial or by choosing to not heal her miraculously. 

Mostly I just pray that she survives the surgery.  I trust the doctors – I mean, it’s Yale! – but they have to bring her back to life, essentially, when they’re done.  I fear that they’ll try to bring her back and she won’t come back to us.  I think about it all the time and it’s this big giant black pit in my stomach.   I am not promised an easy life, and I am not promised a life without sadness, either.  I have no idea what God will do with Olivia’s life.  I do beg Him all the time to let us have a full life with her.  I beg Him to let me be her mommy and to let me raise her.  I beg Him to be merciful and let our girl stay here on earth with us. 

 

 

But usually I force myself to be optimistic. I remind myself of what Dr. Fahey said – that there would have to be an accident (like one of the machines would have to break in the OR) for her to die in surgery.  That this surgery has been happening since the ‘50s and they do it all the time.  That hers is mild.  That my daughter gets to be treated at a prestigious hospital that has a whole team of pediatric cardiologists!  And I remember that my girls’ name is literally being lifted up to God all around the country, continually. 

Mostly we just try to enjoy her and let ourselves be in awe of how beautiful and adorable she is. :)  She is *such* a gift to us and we just treasure her and her precious little life – made even more precious to us now. 

So today she turns four weeks old, and that’s where we are right now.  I simultaneously dread the end of April and also want it over with immediately.  I am ready, as Dr. Fahey said, “for this all to be just a bad memory.” 

I think it did my own heart good to get this out in a post – my underlying prayer, through all of this {besides that Livi stays alive, obviously}, is that God would use me through all of this to be a great testimony for Him.  I want to be a shining light and let others know that God is GOOD and LOVING and MERCIFUL even when life seems to go horribly wrong. 

I know the Lord has a wonderful and perfect plan for my girl’s life!