Happy Heart Day- Five Years

Today is a day to celebrate just how far this little girl has come.

5 years ago today she went through something unbelievable just to get the chance at this life.  5 years ago today I trusted the nurses, doctors and surgeon enough to hand off my tiny baby for her heart to be stopped and made whole.

It may have been the hardest thing I've ever had to do, but my daughter seemed to take it in a stride. She was no longer sickly and gray, struggling to breathe, and unable to eat.  She could grow, she could nurse, she could thrive.

And look at her now.

Today I celebrate this amazing little person.  This girl who has grown so much, and who has been the reason I've grown so much too.

We pulled out the book that shows the story of her first year.  We flip through the pictures and tell her how when she was a baby she was very sick and needed an operation to fix her heart.  She pores over the pictures, saying "Poor baby Cora.  So sick.'  She touches the photos that show the wound on her chest and feels sorry for her baby self.  "So hurt,"  she croons. Then she tells me "All better," and turns a few more pages to see her baby self smiling and laughing, getting cuter by the minute.  "Baby Cora's so cute..." she says.  We look at the scar on her chest, a white line that stretches the length of her sternum.  We talk about how strong and brave she is, and how wonderful that her doctors helped fix her heart.

It makes me happy to hear her tell the story of her heart repair with her short little sentences.  I get tingly with pride when she shows me her scar and tells me how her body can heal.  It makes me smile through a few tears seeing just how far she has come.

Happy Heart Day, my love.

Happy Heart Day

To the beautiful, silly, hilarious one who stole my heart just over four years ago.

On this day, four years after the open heart surgery that saved your precious life, I am oh so grateful.  Grateful that the surgery gave me you.  I can't even imagine life without you, and I never want to have to try.

Happy 4th Heart Day, sweet Cora.

Third Heart Day

Three years ago today, my baby got the chance to start her life.  At the crack of dawn, she was whisked away to a wonderful surgeon who used his skills to fix her faulty little heart.

In the 11-1/2 weeks leading up to that day, there was so much fear.  So much worry, so much stress.  So many decisions to make.  So many bittersweet moments of loving this tiny girl, all the while knowing that there was a chance that her life would be cut short.

I remember taking photos of her intact white chest, knowing that it'd be the last time I'd see it unmarred by the surgeon's marks.  I knew that it would be a scar that she would carry forever, if she were to make it out of this surgery. 

These days her scar is faint and white.  If you ask her about it, she'll gladly lift up her shirt to show you her scar.  It's funny, because I have always felt like I should have a matching scar myself.  I guess I do, although mine is invisible and more metaphorical.  That process definitely marked me with my own permanent scars.  But my scar is in my mind and in my memories.

 

Sometimes those days seem like just yesterday.  It only takes a second to bring back that feeling of fear, and to feel the tears start to fill my eyes.

But, you know what?  We aren't there anymore.  Today I watch my big girl run around her Grammie's house, dancing and singing and reading books.  She has no memory of those days of fear.  And they are fading more and more into the background of our life together.  We know how very much we have to look forward to with this wonderful little girl.

And so today, on the THIRD anniversary of Cora's open heart surgery, I am purely and simply grateful.  Grateful for all the moments we've shared together since that day.  Grateful for all the ways that she makes our lives better.  Grateful that there are so many people who love her like we do.

We love you, Cora.  Happy Heart Day!

My Little Valentine

Valentine's conjures images of heart and flowers, love and romance.

For me, this year, it brings up lots of thoughts about hearts.  Cora's heart, to be specific.  Today is the last day of Congenital Heart Defect week, and I'd be lying if I didn't say that this subject is one that is now very close to my own heart.

My little beauty was born with a significant heart defect and was born in heart failure.  From the time of her birth until her much-anticipated open heart surgery at 11-1/2 weeks old, it was a time of stress, worry, and struggle to get her big enough and strong enough to make it through surgery.  Because her heart had to work so hard, she could barely eat, and had to be fed largely through a tube in her nose.  We gradually watched her grow weak, pale, listless and sweaty, watched her develop reflux so severe that people who saw her would blanch and turn pale themselves before turning away.

Today, Cora's heart defect is really just a memory.  Thanks to the skilled hands of her surgeon and his amazing team, she now has a scar on her chest (which she will gladly show you if you ask), a mild murmur, and a return appointment for a check-up in three years.

To be spared the worry about that sweet little ticker is something that I am truly grateful for.

Next week we'll be going to have a peek at our newest little girlie's developing heart, and are hoping that all checks out well.  While we are so lucky that most heart defects are treatable today, it is a stress that no parent wishes upon their child.

So on this Valentine's Day, I send out my thanks to all the people who helped fix my Cora girl's tiny heart.  And I send my love to my sweet girl, and the rest of the loves in my life.

Happy Valentine's Day.

Two Years Ago Today

Two years ago today...

My baby's tiny 9 pound body was sedated, anesthetized and sliced open; her little heart stopped so that it could be fixed up by skilled hands.

Two years ago today...

I had to trust that I would see her smiling face again, as I handed her to a team that could do for her what I could not.

Two years ago today...

She had the chance to start again; whole and healed.  And we too were given the gift of starting anew.



I have no doubt that Cora wouldn't have lived much longer without that surgery.  Waiting for that day to arrive, watching her struggle, and watching myself dwindle as my fear started to erase me...  It's a hard time to remember. 

Thankfully, the lives we have been living since that day make that time seem like a smaller and smaller part of our lives; a smaller part of Cora.

I am so grateful to be able to reflect on those memories, to remember my love and my fear, and then to look at my smiling, silly, sassy, stubborn, defiant little girl.  Happy heart day to us.

Congenital Heart Defect Awareness Week

Before Cora was born, heart defects were not something I thought much about.  A few years ago, a friend's new baby had open heart surgery with success, but it still felt like something that hadn't touched me personally.  All that changed when we were told that the reason our one day old baby was turning blue was because she had a serious heart defect that would require open heart surgery between 2 and 4 months of age.

Cora had a complete atrioventricular canal defect, which is one of the most common heart defects in babies with Down syndrome.

Research shows that without surgery, only 4% of children with complete AVSD (or complete AV canal defects) survive beyond 5 years.  In Cora's case, I sincerely doubt she would have survived to four months old.  She was in serious heart failure at the time of her surgery at 11-1/2 weeks old.

Of all the blessings in my life, I am most grateful for Cora's successful heart surgery.  Without surgery she would have had no chance at a life. 

Congenital heart defects are the most common types of birth defects.  Almost 40,000 babies are born with CHDs in the United States each year.  For children with Down syndrome, the incidence is much higher than the typical population.  Current information shows that approximately 40-60% of babies with Down syndrome have a heart defect.  About 35% of these children have AV canal defects like Cora.  Some of the more minor defects will repair themselves without surgery, but many require surgery.

Knowing that your tiny baby will have open heart surgery is something that no one wishes for their family.  In fact, many decisions to terminate pregnancies with a prenatal diagnosis of Down syndrome are due to the presence of a heart defect.  But as I have learned, the prognosis for children with Ds and a heart defect is very good.  Most defects can be successfully repaired surgically or resolve on their own in time.  Although stressful and painful, a diagnosis of Down syndrome and a heart defect is not as dire as it once was.

Since Cora was born, I have been in touch with so many other families whose children have undergone open heart surgery.  Some of them feel almost like family.  Many of their stories helped me as I prepared for Cora's surgery, and they inspired me to do the same for other families down the road.  I began to compile a list of blogs, stories and advice written by other parents of children with Down syndrome who have had surgery.  I only hope that our story and the stories of other families like ours can continue to help others who will go through this experience in the future.

If you would like to share your family's story about Down syndrome and open heart surgery or congenital heart defects on this blog, I would be honored to post it here.

Dealing with Medical Worries- 31 for 21

Some of my first concerns after Cora was born were the myriad of common medical conditions for people with Down syndrome.  I read about all the things that are common in the Ds population: heart problems, gastrointestinal problems, orthopedic problems, upper respiratory infections, hearing loss, sleep apnea, thyroid problems, eye problems, leukemia, and skin conditions.  There are others too, and all together the list can be so daunting.  I mean, what isn't on the list?  And of course, the heart seems like the biggest scariest one of all.

When Cora was born at home and my midwife told me that she likely had Down syndrome, she also told me that her heart sounded good.  Of course, she told me that sometimes you can't hear problems right away and that Cora would need to be evaluated.  I was so relieved then.  She was born on a Thursday and we planned to get her in for a full examination and referral to specialists on the following Monday.

But then Friday morning brought us a baby who began to repeatedly turn blue.  An ER run quickly morphed into a NICU stay, where a pediatric cardiologist came in the late afternoon (thank goodness we didn't have to wait until Monday morning!) and told us about her heart defect.  After explaining what it entailed for a moment I thought I heard him say that it wasn't repairable.  But thankfully I was wrong.  Yes, the first three months of Cora's life were pure torture.  We waited for her already present heart failure to get worse and watched her deteriorate before our eyes until her heart surgery was done.  I had never experienced fear like that.

But you know what?  Three months into our life with Cora her heart was fixed.  She began a smooth recovery and her development finally started to take off.   

And that fear was lifted away like magic.

I've heard a lot of parents rattle off their new little one with Down syndrome's medical stats, often exclaiming at the end, "But at least he doesn't have a heart defect."  I can totally understand that feeling.

But for us, Cora having a heart defect was certainly not the worst thing that could happen.  Yes it made our lives pretty miserable for a few months.  But that part of her life is quickly shrinking into our past, and it encompasses such a short part of her history already.  And it definitely worked to make us stronger parents and to put it all into perspective. The fear of losing her forced my love for her front and center right away.  I didn't have time to slowly adjust to being a parent or to her diagnosis, or to gradually bond with her.  I felt like I had to fight for her all at once.  The mommy in me was born on January 13, 2011 and I came out figuratively kicking and screaming in a way my little baby with heart failure wasn't able to do.  Thank goodness we were able to do that for her.

So, I guess... all that rambling is to say that Cora's heart defect and her surgery, that big nightmare of the bad things that can happen, turned out perfectly alright for us. 

In fact, most of the heart defects in children with Down syndrome are very treatable now.  Some require surgery and some do not.  Most of the little ones that I know in person or follow in our  blogging world have had wonderful recoveries.  Of course, there are always a few that end up as true worst case scenarios, but those are few and far between.  Yes, the fear is there for a reason, but the chances are very very strong that your baby with Down syndrome's heart defect will not ruin their life.

Cora has had a handful of other medical concerns that may seem less daunting than an enormous heart defect.  Of course, when it's your baby and your life any medical issue seems daunting. But no babies have all of the conditions on that list of possibilities.

So far, in addition to open heart surgery, Cora has had a tonsillectomy and adenoidectomy to treat apnea and considerable airway blockage. She had complications and respiratory distress after that surgery, but it was ultimately successful and now her apnea is mild and doesn't require treatment.  She has mild nystagmus that is improving as she gets older and doesn't require treatment at this time.  She definitely has low tone and is pretty weak in developing gross motor skills.  She's actually getting fit for foot and ankle braces this week.  She has had excema, constipation and a sensitive system.  Her feeding is a little bit behind, complicated by a severe issue with food intolerance called FPIES (which is completely unrelated to Down syndrome) and delayed dentition, and a serious case of being majorly stubborn.

And there are a lot of things on that long list of possible conditions that she does not have.

Of course, she is monitored regularly.  She has a pediatrician, a cardiologist, an audiologist, an opthalmologist, an ENT, a sleep neurologist, a gasteroenterologist, a geneticist, a couple of chiropractors, a naturopath, and a slew of therapists from speech, to occupational and physical therapists.  She doesn't see them all on a regular schedule, though.  But even when she's healthy there are always check-ups.  It definitely takes a good team and a great pediatrician to manage all her care.

But all in all, it is manageable.  She is a healthy little girl who has seldom been sick.  We manage her appointments the best way we can.  Sometimes it seems difficult, but at other times it doesn't feel like a very prominent part of our lives.  I imagine that it is a more challenging experience than some parents probably expect to deal with, but there really is no way to know whether a child will end up with medical problems.  Even the best prenatal tests can't tell you everything your child will have to deal with.

After a prenatal test diagnoses Down syndrome, I am told that many doctors focus on all the possible medical conditions that can result.  And these possibilities can play an enormous role in the choice that an expectant parent makes about whether to continue the pregnancy.

But these tests can't tell you everything.  They can't tell you how hard you will fight for the life of your child.  They can't tell you how you will feel if you feel that your baby's life is in danger and how very precious that life will become to you.  They can't show you all the joys you will experience or the ways your child will change your life for the better, even if there are medical obstacles to face.

The list is really just a list of fears.  Each child's story will be different.  But each story has the chance to be a good, worthwhile and valued story, even if there are a few obstacles in the way.

Cora's First Heart Day and a Giveaway!

 

Has it really been a year already?  A year ago today my baby had the heart surgery that saved her life.

Looking at my smiling girl, tucked into my arms, I say “baby” and touch her little chest.  And she beams an enormous toothless grin, thrilled to be my baby girl.  Under the smooth white scar rests her tiny beating heart; strong, solid, growing, perfect.  The patches are holding, the valves show no leakage.  A perfect repair.

Even though she’s had this new and improved heart for most of her life by now, it still feels like yesterday that she was white and gray instead of pink, that she couldn’t eat more than ½ ounce by mouth, that she sweated through her clothes just by trying to breathe, the skin around her ribcage sucking in with each breath.  It doesn’t seem that long ago that we waited in fear for the day of her surgery, feeling like it would never come, knowing it was the only way she would be able to survive.  So very afraid. 

We knew that it’s usually a successful procedure, that the risk of death is less than 5%.  I’d try to hide the statistician in my mind who bubbled up a few times to tell me that she had had a smaller chance of having Down syndrome than she did of dying during open heart surgery.  I’d shove that little voice down deep, but I could still hear it whispering.  When we signed the consent form, the surgeon had written three words down under risks:  bleeding, infection, death.  Of course you try and keep your mind away from that third word.  You are afraid to even think it.  Realistically you don’t think that it will happen, but you know that it could. And could is enough to paralyze you.

I am not the only mother who has handed off her infant, kissed her sleeping head while holding back tears and prayed to see her breathing in just a few hours.   

And breathing she certainly was.  Even on the ventilator and covered with tubes, she was pink for the first time, finally able to circulate her blood properly.  Within a couple of days she was able to eat, really eat.  Within a week she was nursing, even after we'd been resigned to bottles and feeding tubes.  

And in the last 12 months she has done so much.  She’s been capturing hearts with her silly smiles.  Lord knows that she has me wrapped around every pudgy finger on each of her little hands.

She is stubborn, she is silly.  She is smart and she is beautiful.

I am so thankful for the gift she is in my life.  I am beyond grateful to the cardiologist who cared for her, for the surgeon whose hands repaired that tiniest of hearts, for the doctors and therapists who help her achieve her potential, and for all of the people who love her and have prayed for her.   

I am grateful for everything that she is.  I wouldn’t change any of it.  I wouldn’t erase that little scar or wipe away the memory of my own fear.   I will be forever grateful that one year ago today the doctors saved my own heart when they repaired hers.

Happy 1^st Heart Day, my beautiful girl!

_____________________________________________________________________________

And to Celebrate... A Giveaway!

To celebrate the one year anniversary of my sweetie girl's perfectly repaired heart, a few little things donated by some of the people who love Cora the most:

• A handmade heart applique shirt, lovingly made by Cora's Grammie Melanie (and yes... it's like the one Cora is wearing above, but in blue and red!)  The winner will get to choose the size onesie or shirt that it comes on.

• Antique Copper Book Locket Necklace by Cora's "Aunt" Christine.  Christine was the first person (other than birthing staff and me and Nick) to hold little baby Cora.  She snuggled her in tight for hours while we all slept.  And even more, Cora shares her Heart Day with Aunt Teenie's Birthday! (Happy Birthday to my beautiful Twinnie!)  Visit Christine's shop Teeniebirdie on Etsy for more fun finds.

• A beautiful little flower, handmade by my sister Mira.  This can be put on a headband or a clip.  Winner's choice!

• And a set of two white flower baby barrettes made by me.

To enter the Giveaway drawing, just leave a comment on today's post, and become a follower of Our Cora Bean (if you aren't already).  The winners will be chosen at random and announced on Wednesday, April 11th.  (After we come back from our Easter weekend to Victoria, B.C.)

Of Mended Hearts

This time of year it is natural to reflect on the things we are thankful for.

And today, I got to do just that with a visit to Cora's cardiologist.  She was last seen 6 months ago and had her heart surgery 7 months ago already.  Her doctor confirmed what he said the last time we saw him: that her repair is ideal and that she looks wonderful.  We don't go back for a year, and then probably every 5 years or so beyond that.

Quite the amazing transformation from the little pale baby who could barely eat or breathe.

And I am so so grateful to her cardiologist and to her incredible surgeon, and to everyone else who has cared for our girl.

I am also happy to report that Miss McKenzie, who had her own open heart surgery yesterday, is doing well. Her mother says that everything went very well with no complications, and that she is wiggling around today.  Thank you for your thoughts and prayers for this little sweetie.  Now we just hope that she continues to heal and recover with no significant hurdles along the way so that she and her family can head home soon.

No new cute pics since yesterday, due to our super busy day, so how about an oldie but cutie?  This one's from 4 month old Cora, just about 6 weeks after her surgery.  What a pretty girl...

And if you missed yesterday's post, you can still go there to leave a comment and be entered to win a super-cute customized Christmas ornament.  The winner will be announced on Friday.

Adventures in Feeding, Then and Now

Now that Miss Cora is 6 months old, I realize that her life is divided in half for me.  The first three months before open heart surgery, and the last three months since.

Like I've said before, it really is night and day.  While we were waiting for surgery, it really did feel that the waiting and the fear would go on forever.  It seemed impossible that it would be behind us.  And now it almost seems like an imaginary time.  The struggles she faced before surgery now seem so distant.

But even though it seems like ancient history already, it has definitely colored my feelings about our life today.  I think that I really appreciate our day-to-day more than I may have otherwise. 

Anyway...  I got to thinking about feeding Cora again today.  The first post I wrote in this blog was about feeding her.  Because for the first 12 weeks, feeding Cora was the focus of my life: the horribly stressful, difficult, all-consuming focus of our lives.

Many other parents of children with Down syndrome can attest to this, and probably others as well, but feeding a baby with Ds, especially one with a heart defect, is very different from feeding a typical baby.  Imagine a baby that seems to have no sense that she is hungry, that doesn't wake up to be fed, or show any hunger cues, that doesn't open her mouth to eat, and that almost never takes her "quota".  For a typical full-term baby you may never even know that there is a quota.  But when the NICU doctor gives you a feeding schedule with intake requirements just to take your baby home and sends you to specialists at the Feeding Clinic it's a different story.  Especially when you know that the baby has to gain weight to have a surgery that she will die without.  Trying to feed your baby becomes quite a stressful event.

I remember hearing advice about how to know when your baby has eaten enough, and thinking that there was no way to apply that to Cora.  That Cora would starve if we left it up to her.    And she very likely would have.  I never imagined that things would really change.

And then, when we were working on breastfeeding and actually started her on breastfeeding after surgery, I was overjoyed but was still so worried and stressed.  How to translate all we'd been doing to breastfeeding, especially when it was so hard to keep track of it all?

All the information I received advised me to feed per demand rather than feed on a schedule.  But how would that work with a baby that didn't seem to know she was hungry?

Amazingly, it has worked out.  True, at first she did breastfeed on a schedule, but eventually she started to let me know she was hungry at different times, often more frequently than I would have otherwise fed her.  Gradually I increased the number of hours I would let her sleep at night between feeds and still she continued to gain weight.  We kept up a bottle or two a day of fortified breast milk for a few weeks, and we were able to let that go as well.  I gradually reduced my pumping as my milk supply reduced and evened out.

And now, our girlie is fed on demand (although I usually know how long it's been since she's eaten and will offer her food after a period of time).  She has learned to let me know she is hungry and I've learned to trust that I can read her cues.  She eats a lot during the day and then goes about 10 hours at night before waking up to be fed.  She hasn't taken a bottle in at least a month.  I even stopped pumping over a week ago.  And still she gains weight.  Our little Superstar!

And the best part?  Feeding her is no longer a stressful event.  I no longer feel fear in my stomach when it's time to eat.  I don't spend evenings crying because I can barely do the most basic mother's job of feeding my infant.  Now feeding is a fun time to cuddle, snuggle, and love.  And eat.   She finds it comforting too, which is natural, but is such a change. It is one of my favorite recurring parts of the day and I am in no hurry to wean her any time soon.

This adventure is so much more fun.

Look at brand new Cora Bean learning how to eat!  Wow!

A Perfect Repair

We are very excited to report that Cora went for her post-surgical follow up at the cardiologist's today and is doing great!  Her oxygen saturation is 100%,which is perfect for a normal healthy heart, and wonderful for a repaired heart.  Her doctor originally wanted her at 92% or above.  He said that her incision is healing well, and that the small scab remaining should heal just fine.

She had an EKG and an echocardiogram, and then he told us that her repair was perfect.  There is no valve leakage, which is incredible, since valve leakage with this type of surgery is fairly common and will often require future monitoring, and even another surgery, in some cases. But he said that everything looks great and she should most likely not need any other procedures for her heart, ever.  What incredible news.  The only thing we have to do is give her antibiotics before any procedures done in the next 5 months, and then nothing beyond that.  She will follow up in 6 months, and then probably only every couple of years after that.

It's hard to believe that my "heart baby" is going to have a healthy heart from here on out.  When she was born, the prospect of surgery seemed so removed, and the process of waiting and then going through it seemed so scary.  When we were told that she would go into heart failure and we would need to watch for those signs it sounded so big and so looming.  And in the NICU when they put her on diuretics the first time it was still such a shock for me, that her heart problems were starting so soon.  So hard to believe that they are already behind us.  We even get to stop her heart medication today.  Imagine a baby that will be off medication for the first time.  So thrilling.

During our conversation, the cardiologist again referred to the fact that she was in such significant heart failure before surgery.  This doesn't mean that the heart has stopped working.  It means that the heart can't pump enough blood to meet the body's needs.  Lack of oxygen, pulmonary edema, and the pulmonary hypertension that result are the life-threatening results.  I know of another mother whose precious daughter's life was cut short at 4 months old as a result of the hypertension, most likely from waiting too long for surgery.

Thinking of this, I feel a sharp pang in my own heart, remembering how the skin at Cora's ribs sucked in with each breath, how fast and labored her breathing was, how pale her skin, how much she fought to eat barely half of what she needed to grow, how she gagged and wretched, fighting to keep her food down.  And I know that in another time my girl would not even be alive right now.  That even if she hadn't already starved from her inability to eat, her body would have given out and she wouldn't even be with us.  And I am so, so grateful for the medical care, for the surgeon, the doctors, the nurses, the medication, and the equipment that have saved my baby's life.  Because now we get to "treat her like any other baby," and watch her grow and thrive and live.

And we get to watch her smile, laugh (Yes, she started laughing yesterday), talk, coo, and practice holding her head up while sitting, stare for hours at her feet, learn to use those sweet little hands, and continue to captivate and charm us on a daily basis.  Every day really is so precious with her.  I know that soon enough, the days of fear and of watching her struggle just to breathe will be in the distant past.  We will get to have a lifetime to get to know her and to enjoy her and to help her overcome the other hurdles that will present themselves as she grows.

Thank goodness for it all.

Cora, After

For the last few days, we've been adjusting to our new lives.  Altogether, there are a lot of things that have remained the same, but there have been quite a few changes, as well.

Little Cora seems to have acquired new shades to her personality.  Namely, the shade that fusses and cries WAY more often.  She's usually pretty calm throughout the day, but when evening hits it's another story. Our once quiet and calm little girl, whose "fussy period" entailed a little whine until we changed her position every few minutes for a couple of hours, has now shown us how she can scream.  We've figured out a few things that seem to work to calm her down.  The obvious walking around the house bouncing her is hard to sustain.  On my sister Eri's suggestion, we've tried holding her while balancing on a gym ball.  That is also hard to maintain.  And now we've found that holding a pacifier in her mouth for an extended period of time can also help.  She will only take 1 pacifier, "Mr. Green" as Nick has dubbed him.  And she won't hold it in her mouth herself. But if I can hold it in her mouth for an hour or two I will.  A bottle will also keep her quiet for a bit.

Yesterday I discovered another new "pacifier" when I tried nursing her again.  We've been trying to introduce breastfeeding all along, but nipple confusion along with her pronounced gag reflex kept thwarting us.  Now that the surgery has drastically decreased her reflux and gagging (So amazing!) she's had a better shot.  So while trying to pacify her yesterday, she suddenly figured out how to latch on and suck.  Suddenly there was milk dribbling down the sides of her face.  This went on intermittently for about 10 minutes.  I am fervently hoping that we can replicate it today and that perhaps it could be the turning point that may open her up into real breastfeeding.  So keeping my fingers crossed.

But her shifts are also for the better.  Her little personality is so much fun now.  Her little smiley self has truly emerged after this surgery and when she gets to smiling, her little face and body can barely contain those smiles.  I'm usually holding her when this happens, so it's hard to get them on camera to convey the absolute cuteness.  But we'll work on it.

Her feeding habits, unstoppable at the hospital post-surgery, have again become more difficult.  She has the energy, but she doesn't seem to want to eat all the time.  Sometimes she'll horse around and wriggle, smiling her way out of it, and others she'll just fall asleep and we'll have to coax her to eat the whole time.  So overall, her eating is still much better, but still takes a while and can still be a little frustrating. 

And her sleeping habits have changed, as well.  While she still thankfully sleeps soundly through the night (minus the times we wake her to eat), she's not napping nearly as much in the daytime.  This likely contributes to her wailing in the evening, and also makes it way harder for me to get things done, or blog about it all, or sometimes even breathe.  Go figure.

Thought I'd post a little sequence of a minute or two in the life of Cora, After. 

Pretty Little Girl

Now that we're back at home with the surgery behind us I am absolutely exhausted and sore.  Cora and I slept about 10 hours last night (well, Cora actually slept more) and are having a relaxing day at home.  I am going to head to the chiropractor soon for a tune-up post stress and 6 nights sleeping at the hospital.

Going to take a little break from the long-winded posts today and just show off some pictures of our beautiful girl. 

Snuggling with Daddy.  Getting ready to go home!

 

 

Snoozing in the car

Checking out her battle scars.  Not too shabby.

Smiling at Mum and Dad, Again!

Home Sweet Home

I am pleased to report that Cora was discharged today and we are now at home.  Such a happy day!  I have nevertheless shed a number of tears.  Hard to believe that this is behind us now.

Little girlie seems to be wavering between grumpy girl with a lot of tears (she appears to have newfound energy for crying, among other things) and a ton of smiles. Sometimes she stops crying to smile at me, which is odd, but adorable.  I'll have to work on getting some new pictures of her smiles, and some of her newly arrived pouty lower lip.

Right now Nick is finishing feeding her and she is inexplicably upset.  Hope she's not uncomfortable, but she's still taking her pain medication, so that shouldn't be it.

I am looking forward to a restful night, so hopefully she'll calm down and we can enjoy our evening.

Thanks to everyone for all their love and support.  I will plan to post more after a little rest.

Day 4 Post Op - Waiting to Go Home

Day 4 after her surgery is going by pretty smoothly.  We were hoping they'd let us go today, but her blood tests showed low potassium levels again, so they want to keep her for one more day to monitor it.  They're not giving her any more potassium, so I guess it's not a really big deal, but they just want to monitor it.

She had her oxygen cannula taken out yesterday afternoon, and her O2 stats have been in the upper 90s.  Quite remarkable.

She had a fussy evening yesterday and has been intermittently fussy today.  They're keeping on top of her pain medication, so it's hard to know whether she's experiencing pain or discomfort or if it's something else.  She does seem to cry more easily in general and has started sticking out her lower lip when she's unhappy, which is ridiculously cute, even though it means she's not too happy.  Hoping that once we're at home she'll feel better about everything.  Rather than here, when people keep coming by to poke and prod her at regular intervals.

We're basically just waiting, hanging out with Cora, feeding her full bottles, which she continues to take with no problems, and trying to get some sleep in between.

It's so hard to believe how different life already is and will continue to be.  We can't wait to be home to get to start living it again on our own.

Day 3 Post-Op - Coming Along Nicely

Today has been a good day so far.  Nick's dad and sister got into town last night and have been visiting, which is nice.  My mama went home today with promises to visit soon.

Little Cora continues to amaze us.  She's still eating all her feeds easily and with gusto and is in much better spirits today.  Another great perk we've noticed is that her reflux seems to be gone.  She's no longer coughing, gagging, choking and retching during her feeds and throughout the day.  I certainly didn't think that it was associated with her heart, but here we are.  So that's another thing to be thankful for.

And while I am sitting here, Cora has been treating her Daddy to some big smiles, the first that have graced her face since the surgery.

The last of her chest tubes and pacemaker wires came out today, as well as her foot IV (since it was leaking) so all she has now is the O2 and her central line.  Her respiration and heart rate are being monitored still and they're periodically checking O2 levels.  Later today they'll test her O2 again by turning off the oxygen and seeing how she does.  Hopefully she'll stay at 92 or above, which she hasn't done yet.  But she's on a really low level of oxygen and the nurses think she'll probably be ready to be off soon.  Getting her O2 levels can be tricky since she's so squirmy, which often makes it hard to get a good reading, so I'm hoping that we don't get stuck here due to inaccurate readings.

Since that seems to be the last reason we're still here, we're hoping that she can conquer that too.  It will just be so nice to get her home.  Her doctor said that Monday was the likely discharge day, but we've started to hope for Sunday instead.  We should probably not try to get our hopes up, because either way we should be going home soon.

But the hospital stay has been great overall.  I'm sure much of my appreciation stems from the fact that Cora is doing so well, but it's really been pretty great, especially since we've essentially been here since Monday (if you include the pre-op day before we checked in).  We've been lucky to have wonderful friends bring us dinners every night, so we're not eating hospital food all the time.  And the hospital stay is so much less traumatic when you're prepared for it.  The NICU was so tough, since it wasn't expected and we never knew how long she'd be there, and they didn't have facilities for parents to regularly stay overnight.  It's been nice that we can be here with her.  Although Nick has done a couple of errand runs home, I've been here the whole time.  I did stay in the Cool Bus with my mom last night though.  Thank you to Nick for sleeping on the cot and taking care of Miss Cora during the night time hours.

There hasn't been a lot of drama today.  It's been nice for us, but probably doesn't make for very riveting reading.  But that's OK by me.  I'm looking forward to our lives getting a lot less dramatic in the very near future.  I just can't wait to snuggle up in my bed with my baby for a couple of days and have a perfectly boring and lovely time.  It's so exciting that I should get to do it soon!

Day 2 Post-Op- Out of the PICU

Sorry for the hiatus in posting, but I've been having trouble with the internet at the hospital.  Finally made it on with the help of Nick.

Good news...  Cora is now out of the PICU and onto the pediatric floor!  We are very happy about that.  She is overall doing very well.  Dr. Kyser came in to talk to us and told us that she's a "Superstar" with regard to her recovery so far and that she is doing great!  He expects that we should be able to take her home by Monday.

They took out her catheter this morning, and her NG tube yesterday. At this point she still has the nasal cannula for oxygen, electrodes monitoring her vitals, a couple of chest tubes, her central line, an IV and her pacemaker wires.   She's still pretty connected, but nothing like a day ago.

She's not quite ready to be off the oxygen yet.  They want her O2 saturation to stay above 92, and they dropped the oxygen by half today, but she's not quite ready to be off without dropping a bit.  Hopefully it's due to recovering from being off the ventilator and won't be a problem.  Her nostrils still flare a bit occasionally too, but the doctor isn't too concerned, since it doesn't look like her breathing is otherwise labored.  She is pink and vigorous for sure.

But the bummer today is that while I was sleeping away in the parent room last night (Finally, 7 hours of sleep!) she was doing so well and was so sleepy that the night nurse decided she didn't need any pain medication.  Can you imagine being not even 48 hours out of open heart surgery and not having ANY pain meds?  He must have been insane.  When I went in at 8 this morning, she was sleeping, but by 8:30 she was wailing.  And this is a baby who barely cries.  She will cry, but it may be a wail or two and she's always been very easily consoled.  But she wouldn't calm down.  The nurse gave her some more Tylenol and I fed her and she seemed better.  But then the IV nurse had to come by and redress her central line.  I was holding her at the time and the nurse wanted me to continue to hold her to help calm her down, but it didn't work.  The poor thing cried her little head off and it was very traumatic to her and to me. 

Later, during feeding she was again crying inconsolably.  I told the nurse that I thought she was in pain, so she gave her some morphine, which immediately calmed her down.  She was loopy for a while afterward, but at least not in pain.  It pisses me off that they got behind on her pain meds.  How can you deprive a 3 month old of a little Tylenol to make sure that her pain doesn't get out of control?  It's like we've been playing catch up all day long.  She had a dose of Tylenol with codeine a couple of hours ago, and the peds floor nurse is going to make sure not to miss any doses from here on out.  So hopefully she'll be happier.  I do not like to see her cry like that.

And the biggest and most significant thing to me is her eating.  As I've posted before, Miss Cora's eating has been the main focus of our lives since she arrived.  So difficult.  If it weren't for her feeding tube, things would have been very different in the past few weeks, and not in a good way.  Now, lo and behold, she took 100 mL this morning in no time at all.  No gagging, heaving or retching either.  Her second feed wasn't quite as good, but I attribute that to her pain.  She had a freak-out mid feed and needed the morphine.  She again took about 100 at her last feed!  It is absolutely amazing to me.

After her first great feed this morning, after walking away, I sat down and started to cry.  Since it had been normal for her all along, I didn't realize how truly compromised she was until I had this to compare it to.  And it's only the second day after her surgery.  It makes me so sad as it sinks in that my daughter was in pretty advanced congestive heart failure until a couple of days ago.  And how amazing it is that a surgery can actually make things so much better.  It's just so hard to believe, even though I knew it.  I guess I didn't really know it.  What a shift of perspective.

Things aren't quite easy yet.  We're not out of the hospital until we're walking out the door, and we've got to learn to read her signals for pain and try and make her as comfortable as possible. But it's just incredible how quickly she is recovering.  Everyone told me that infants are incredibly resilient after heart surgery.  And so far we've been very lucky with her results.  We'll just keep focusing on continuing to improve and recover.

I'm gonna sign off now and go watch Nick give our girl a bottle.  Looks like it just may be a new record... 

Cora getting a nebulizer treatment to help with airway swelling after getting off the ventilator.

Chilling in the PICU-  alert and content yesterday afternoon.

 

Having her first bottle of milk with Daddy last night.  Hungry girlie!

 

On the pediatric floor rocking her new legwarmers!

 

Beating her record, once again!

Off the Ventilator!

Cora was just extubated and is breathing well on her own.  She's wearing a nasal cannula to give her a little extra oxygen for a while, but rumor has it she may not need it for long.  They also took out her big chest tube, so she's now minus two big toobies!  Yay!

She looks great (considering what she's been through).  She is super pink all the way to her toes, and when she cries she turns bright red.  Her little voice is very weak and hoarse from the breathing tube.  And she is wriggling away, so she is truly our hoarse little horsey right now.

She has spent most of the day peacefully sleeping, which is pretty impressive considering that the only pain medication she is on right now is Tylenol, believe it or not.  They'll continue to give her morphine if she seems to get really uncomfortable, but otherwise Tylenol seems to be doing the trick.

They plan to take out her arterial line pretty soon, as well.

These are all great signs, because she has to be off all these things to move to the pediatric floor.  So hopefully she'll still be on course to get to move tomorrow.

We are quite excited, because in about a half hour after they check her blood gases again, we should get to hold her for the first time post-surgery. Woo hoo!

Since she's awake, I'm going to go hang out with her some more, but wanted to update.

First Day Post-Op- Planning to Extubate

Cora's cardiologist came in to talk to Nick this morning and said she's looking great.  He recommended extubating so we're in the process of waiting for that to happen.  They took her off the Fentanyl drip a little while ago, and are waiting for her to start to wake up.  In the meantime, the respiratory therapist has slowed the vent to allow her to do some of the breathing on her own.  The idea is that by the time she is off the narcotics and awake they will remove the tube.  We are excited to see her awake and have the tube out, and are hoping that she's not too upset afterward.  This is also exciting because the sooner she's off the ventilator the sooner she will be out of the PICU and onto the pediatric floor.

Of course, the ped floor doesn't have a quiet room for parents to try to sleep, so it may be harder to try and rest.  But I seem to be failing in the rest and sleep quest these past few days anyway.  I did get a solid 4 hours of sleep in the parent room, which is more than I usually sleep at a stretch due to pumping and feeding.  But I pushed the pumping out a bit and slept.  Of course, I've been awake since 3 now.  And it's SO frustrating, since I know I need sleep to stay together and stay healthy for my little Bean.  I know it's recommended to rest well the night after surgery since she's medicated anyway, but oh well.

We'll keep the updates coming as there is more to relate!

What a Day

It's 10:00 pm and little Cora was just swaddled up and settled down, hopefully for the whole night.  She's pretty medicated and is supposedly not really awake but has still gotten agitated off and on.  She really doesn't like it when the nurses come and mess with any of her many lines and tubes.

The doctor was just in and said that all her labs look great, except that her potassium is a little low (due to the diuretics) so they're going to give her some more potassium.  She's on narcotic pain meds, Tylenol, meds for her heart, pain meds, an IV solution, stomach acid reducers, and I think that is all.  Oh yeah... earlier they gave her some other meds to help with her anxiety.  It was during an episode of thrashing around and getting really upset and it was amazing.  In went the Ativan into her central line and she suddenly went peaceful.  Whew.  I think I needed some of that myself.  Or I would have if I'd have had to continue watching her be upset.

Of course, my mind isn't at its sharpest at this point.  It's like baby brain times ten.  I finally took a little nap after she was settled and calm this afternoon and feel like a new person.  I don't think I had ever felt so tired in my life.  A lovely friend dropped off a great dinner for us tonight and we went out to the bus and decompressed for an hour with a beer while Grammy and Grandpa sat with Cora.  That was nice.  I felt guilty to leave her for a bit, but I think we needed that little escape... to finally release a little bit of all the built up pressure we've been feeling for the last couple of days.  And they tell us that it's good timing now, since she's sedated and not really aware of what's going on.

We are exhausted and drained.  And happy too.

Looking forward to tomorrow and hoping that she can get off the ventilator soon so that she will be on her way out of the PICU.  But I'm a little nervous for tomorrow since I hate to see her upset and agitated.  And I can't imagine her being conscious and content with her current restrictions in movement, as well as all the stuff sticking out of her body.  But I know that she is doing well, and that they are staying on top of her pain and her anxiety.

We are so thankful that she is doing so well.  Thankful for the skill of the surgeons, the care of all the nurses, anesthesiologists, respiratory therapists and staff.  And very very thankful for all of the love and support of our friends and family.  Thank you all for your thoughts, prayers and support.

Warning:  Post-operative pictures below: shows incision site.