Oh Baby, The Journey We Have Been On This Year!!

My Dear Sweet Olivia Mary,

When we started this blog (which by the time you are able to read this independently will have been bound into a beautiful book form), it was my intention that we keep our loved ones informed about your health & be able to enjoy your milestones.  I also wanted you to be fully aware of your story, so that you can truly embrace your path.  Please excuse the absence we have taken in keeping it up to date.  I suppose it's true what "they say" about second children missing out on the documentation of their start.  I assure you that we have been documenting and filing photos and videos away.  Now it's time for me to finally sit down & catch you up on the roller coaster we have been on since our last post.

To start, I want to acknowledge this day.  One year ago today, we walked out of CHOP knowing that our family's path was about to take a turn that we never could have imagined.  You were diagnosed with a congenital heart defect & my world seemed to shatter around me.  Daddy doesn't want me to memorialize this day, but I know he processes things very differently than I do.  Our path has been winding, full of ups and downs, but overall has been fairly smooth (all things considered of course!).  However, it's important for me to express how impactful this day will forever be, as it remains a start to our journey that has made me more courageous that I ever thought I was capable of.  Dad is the strong and practical one in our family and in the past I have jokingly told him that if a post-apocalyptic world is ever upon us that he will be like the father in Cormac McCarthy's The Road and that he will be the one to survive with our children.  This journey has changed my viewpoint and I know that whatever is placed in front of us that I can dig deep down to find the strength and courage to face it head on.

I hope as years go by that I don't grieve this day.  I realize now that this day also marked the start of your incredible fight to not only survive but to thrive so gracefully.  You continue to take my breath away with your strength (physical strength too as you learn to take on your not always so gentle big brother), beautiful heart and soul & remarkable ability to shine light and positive energy.  You will be 8 months old on Monday, February 2nd!  Check out how adorable you and Win were capturing your 7 month pictures!

Our previous blog posts have shared how you are doing from a health perspective, as well as capturing what our family has been up to.  A lot has happened since you turned a month old from a health & heart perspective, so I'm going to bring you up to speed before I share all the fun, exciting photos of what we've been up to.

Right now, you're going strong medication free!  We were able to wean you off of Lasix at your 2 month cardiac visit.  Your battle with reflux continued until you were about 4 and half months old.  Our REACH study nurses coached me in the weaning process with your Zantac for reflux.  We finally got you down to one time a day & I incorporated essential oils and baby massage to help you manage any reflux episodes.

2 Months Old - Cardiac Follow Up

Rockstar with EKG's & ECHO's

 Mom's special Kokadi Heart Wrap Conversion Tula - Dad's anniversary present to me! Now I carry your heart with my heart in our special heart carrier!  Saving this for you - your legacy baby carrier! 

At 2 months old we had our 2 month pediatric appointment & follow up cardiac appointment.  Your pediatrician continued to be impressed with your weight gain.  Your voice & cry were still pretty raspy and your audible, stridor breathing continued to scare me when you were sleeping peacefully.   There were many nights were I sat up videotaping your breathing, counting respirations, throwing the pulse ox on you just to make sure you were actually fine.  It was so wonderful to be part of the REACH study at CHOP because I communicated with your nurses on a daily basis.  They were always so wonderful when I sent them videos - quick to analyze & email them to your pediatrician and cardiologist if necessary.

Big girl at 2 months! These shots were take the morning after Uncle Mario & Aunt Ari tied the knot.  

You were nursing really wonderfully, but about halfway through a feeding session you would stop swallowing properly.  Milk would pour out of your mouth & get us both soaked as you continued to nurse.  Dr. Rychik, your cardiologist, assured us that it wasn't because nursing was too strenuous, so Dr. Noori referred us to CHOP ENT to get your throat checked out.  We had to wait a month to be seen.  Your soft cry & stridor slowly continued to get better.  You started to mature a little bit with your feeds as well, which meant less milk all over us & more in your belly.  Our ENT, Dr. Luv (I kid you not Liv! that's really his name), diagnosed you with mild laryngomalacia & a tight frenulum.  Eventually you would grow out of your laryngomalacia, as your floppy throat grew stronger.  Now I can definitely hear you crying when you're in your crib!  

You & I participated in a wonderful nursing shoot done by your birth photographer, Kristy, as part of the Public Breastfeeding Awareness Project.  These photos made it to many popular blogs, as well as Huffington Post.  Despite lots of milk spillage you still nurse like a rockstar!! NG tube - I don't think so doc, I'm a nursing babe!

Your frenulum would need to be clipped at some point, but Dr. Luv didn't want to put you under anesthesia just to clip it since you'd already been through enough.  He suggested we wait & if you need another heart procedure they could clip at the same time or that we wait and see if you develop a speech problem.  We put it in the back of our minds for a while, but Win's tongue tie has actually gotten worse and his speech clarity is regressing.  You both will actually be going to a wonderful pediatric dentist on February 2nd (8 months!) to have your tongue tie & lip tie lasered.  Hopefully that takes care of any potential speech difficulties for the two of you.  

At your 2 month cardiology appointment, Dr. Rychik gave you the green light to wait another 4 months for a follow up.  That was wonderful news!  The site of your coarctation repair did not seem to be renarrowing, your ECHO & EKG looked wonderful.  There was a bit of minimal regurgitation at your mitral valve & your aortic valve still wasn't presenting as a clear tricuspid or definite bicuspid valve.  Still things to monitor, but overall he was pleased.  You still had no restrictions & Dr. Rychik said that your love of sleep was not due to anything cardio related.  You just liked to catch great zzz's apparently! 

The wait in between your cardiology appointments are torturous for me.   I know at that current moment there isn't an impending worry, but my fears jump to what we may find at your next appointment or the gazillion what if's that pop into my brain all day long.  What if something was missed on your ECHO (get a grip Mom, Dr. Rychik is one of the top pediatric cardiologists in the world!); what if you get a cold, the flu, RSV or some other nasty virus; what if you go into cardiac arrest; what if waiting 4 months until your next appointment is too long and something fails while we wait; and on and on and on - all day long, every day!! Pretty anxiety producing wouldn't you agree sweet pea!!  Don't worry, I'm actively practicing mindfulness throughout the day, so that I try to remain present and keep the past events and fear of what lies ahead from crippling my everyday interactions.  It is not always as easy for me as that, but I'm trying Liv!  Many days I cry or allow myself to get caught up in projecting a scary future or stuck in PTSD mode from our rough start, but then I look into yours & Winston's eyes and am reminded of what the present has waiting.  You will only be this young for a short time, so why waste away that precious time worrying.  Instead I continue to soak you both in daily!  You both are my light!  

When you turned 4 months old, we had a visit with CHOP's neurocardiac center for a full evaluation.  You met with their developmental pediatrician, occupational therapist & physical therapist.  They were really impressed with your recovery after heart surgery.  They checked you out from head to toe & played with you to see how you scored developmentally.  We were referred to CHOP dermatology for the large, red birthmark on the back of your head because there had been a cartilage like mass present a few days prior. The were also pretty sure that you'd be rolling over any day based on your performance.  We see them again when you are 1 year post op (so right after your 1st birthday).  That will be a very long appointment & include a speech therapist and audiology screening.  

You actually haven't really learned to roll since that neurocardiac appointment.  Gross motor delay is one area that many cardiac babies present with, so I asked our cardiologist and pediatrician when you were 6 months old when to worry or take action.  They suggested we wait until after you were 10-12 months, but that seemed way too late for me.  The former special education teacher in me called Pennsylvania's Early Intervention.  The past two weeks you've had evaluations done.  The team that evaluated you felt that you do need physical therapy to catch up on your gross motor skills and that you are borderline in many other developmental areas.  In terms of gross motor, you're not very far behind (in the 5.5-7 month range at 8 months old).  At 8 months old, you can roll from your back to your belly using your right arm.  You can't pull over using your left arm, which is the side your scar is on.  When you're on your belly you stay there until you get upset (sometimes that's quickly & sometimes you tolerate it for large chunks of time), but can't roll from your belly to your back (*there has been a few rare occasions where you're in your crib angry & you've done it).  You do wonderfully sitting up unassisted & can play that way for an hour.  Once something is out of your reach though, you don't try to reach for it.  You also really love standing - holding my hands or standing at the coffee table! It's your new favorite thing to do - pull up to standing when I'm holding your hands & bounce while giggling happily.    

The physical therapist starts today & I'm really excited to have her work with you.  Your goals are to roll consecutively, be able to transition from lying to hands and knees, sitting to crawling and learning how to create these memory patterns so your body knows if a toy is out of reach you can shift your hips to get to it.  I'm really hopeful that in no time at all we'll get you caught up!! Before I know it you'll be crawling, rolling & then walking and running.  

We had an appointment with CHOP dermatology in November & they didn't think your large, red birthmark was significant of any underlying problem.  Actually in the past month or so it has faded a lot.  They said nobody will see it once your hair grows out (unless you go for a buzz cut!).  

In October we started RSV shots.  During RSV season, we go once a month to the pediatrician to get an immunogloben shot that will help you handle RSV more easily if you contract it.  It can apparently pretty dangerous for babies that have congenital heart defects (& various other congenital defects or born premature).  RSV season lasts through March, so we're almost done with our monthly shots.  After your second shot in November, you caught a virus from the office that turned into croup.  That was pretty scary for me!  You had a stuffy nose for one day.  It cleared up & we thought you were fine, but then you woke up the next evening with stridor.  The pediatrician told us to take you to the ER immediately.  I took you alone & Dad stayed with Winston since he was sleeping.  Thankfully they gave you a dose of medication that knocked it out of you within 24 hours.  The pediatrician said you might be more susceptible to getting croup when you get a cold or virus because of your past history with significant breathing and stridor.  I'm hoping that isn't the case Miss Liv! Not fun for anyone!!

Right before Halloween, Winston went into CHOP Cardiac Center to get his heart checked out.  He saw Dr. Nadarajan, had an ECHO & an EKG.  You should be so proud of how brave your big brother was!  He brought his sock monkey along to get tested as well.  It really helped to comfort him, along with Toy Story on the TV in the ECHO room.  He sat like a statue during all his tests.  Thankfully, the did not detect any underlying heart conditions!  They did hear a very soft murmur, but it's nothing that needs to be followed & is considered pretty normal. 

During your 6 month pediatric appointment, Dr. Noori was thrilled to see how well you've been doing with all your follow up visits.  You got up to date on all your vaccines - you are such a super patient.  Bravely holding Mom's hand while you get stuck with needles.  I am a little worried for your 9 month check up because you haven't really gained any weight since your six month appointment.  I think it's probably normal for babies to slow down or lose weight once they get mobile, but you aren't actually mobile so I don't know what Dr. Noori will say.  

Win is getting quite used to Dr.'s and watching you get you heart checked.  Grandpa Howard gave him an old stethoscope that he uses to check everyone out.  Perhaps we have a future cardiologist, Dr. or Vet in our future!  

Your next cardiology follow up was right when you turned 6 months old.  A little more tricky to do the ECHO now that your so "wiggly" as the tech stated.  Hopefully we can keep you calm as we continue getting ECHO's.  Otherwise, they will start to give you sedated ECHO's & I'd prefer we don't have to start those.  You were very cooperative during your EKG and happily giggled at your tech.  Overall, Dr. Rychik was pleased with the results of the EKG & ECHO.  The aortic arch is not renarrowing, but there was some slow movement with blood flow as it ascends over the arch.  We're still not out of the woods in terms of a potential renarrowing, so that is something to continue to watch.  I will be so happy when we make it to the one year post op milestone!  That will change some of the worry about a potential renarrowing.  

The one new finding scares me, but Dr. Rychik assures me he will follow it closely.  In the 4 months since your previous ECHO, you developed a mass under your aortic valve.  Right now it's just a mass, but typically with babies that have had small left-sided features/borderline HLHS it's not uncommon for a subaortic membrane to develop.  If the mass continues to grow & develop fully into a sub-aortic membrane you will need to have an open heart surgery to remove it & repair damage, as it would block blood flow at your aortic valve. 

Generally when these develop, they are slow to grow, so a surgery might be a possibility sometime between 2 & 5 years old.  However, I did some reading and talked to some other parents with children that had a coarctation repair and it is possible that when we go back in six months it will have grown significantly.  Again, Mommy is left to worry & this time for six months!! One mom shared with me that her child was moved to six month follow ups after their mass finding & when they went back for a follow up the mass was so significant that surgery was scheduled the following  week.  I feel like I need to be prepared.  I'm trying not to be scared because I know you are overall thriving, but jeez Liv we've gotta keep that heart healthy kiddo!! I continue to hope that it won't actually grow at all & that you won't ever need that open heart surgery.  

Lately, you've been having some "purple" spells.  Dad keeps telling me not to worry, but I don't have a pulse ox at home anymore to check & make sure you're oxygen sats aren't dipping below normal.  He keeps telling me it's winter, so maybe you're just cold.  You're pretty warm though when it happens, but it is so sporadic and short lived I don't think it's a concern.  If it increases in frequency and duration, I'm definitely going to consult with our team.  

Hard to capture the coloring of your lips, hands & feet with the camera, but this is the best I can get.

We've continued to maintain our well visits with your chiropractor Dr. Brandie & your acupuncturist Meghan.  We're often on an every 2 week schedule, but if you've been feeling sick it could be more frequent.  Meghan has been especially wonderful in treating you & working more specifically to keep your heart healthy in light of this new information.  We're so fortunate to have an incredible team supporting you & our family Olivia!!  

This has been a wicked cold and flu season so far Olivia!! I've really cut back on our playdates and taking you to places where there are lots of kids, with the exception of Winston's toddler and me pre-open connections class.  I am cautious to keep us home if we're coming off of an illness or the community as a whole seems to be getting hit with gross viruses though.  To be very honest, I have been a very laid back heart mom with regards to keeping us at home.  It seems common practice that many keep their families at home & drastically cut down interactions with those outside of the family.  I really wanted to keep our activities, travels & socialization the way I was used to, but I'm very quickly realizing keeping you healthy during cold and flu season by avoiding lots of exposure needs to be a top priority.  I would never forgive myself if you caught a simple cold, virus or something worse like the measles circulating and it's impact put you in the ER or became fatal.  

A couple weeks ago you got your first stomach bug.  Dad was away in California when you got sick.  It was my first time dealing with vomit or a bug for either you or Winston.  I had Aunt Emily on speed dial because I was so afraid the pediatrician would want you to go to the ER.  It was non-stop vomiting all night & your wet diaper count was getting to the point of near dehydration.  Thankfully I was able to keep you hydrated enough & you bounced back over the next couple of days.  

I got the flu for the first time in nearly a decade last week!  Brutal!  Especially since Dad has been super busy with work, so he couldn't really help take care of me or you guys.  Taking care of you & Win while I could barely get out of bad was a whole new challenge.  Thankfully Grammie came and took Win to her house for a few days.  Nursing you helped pass along the antibodies & thankfully nobody else got the flu!  Lots of homeopathics were being used in our house last week!!  

I think that about covers your health & heart updated in a long-winded, nutshell (hey, you gotta give me a break kiddo - lots of appointments over the past 7 months since I last wrote!).  I will be writing a follow up post in the next day or so to FINALLY share all the fun we've been having as a family of 4!  

I love you to the moon & back my little lamb!!  

Love,

Mommy

XO