2 year cardio checkup

Iz had her biannual cardiology workup this morning.  She had an EKG and Echocardiogram and then we visited with her cardiologist.

She has no changes to her treatment plan and no restrictions, which is fantastic.  We like hearing that things are fairly stable.  We like hearing that we don't need to add in any medications or monitoring.  We like hearing that she can stay on her every two years schedule.

But I'd be lying if I said this visit hasn't left me with some pretty severe anxiety.  Yes, she's doing well.   Yes, she gets to continue living her life as she has been these last few years.  Yes, she's clear to keep on keeping on.

But for the first time since she recovered from surgery, for the first time in over five years, for the first time since she left the hospital, her heart is worse than it was the last visit.  The changes are minor, so minor that her cardiologist isn't worried, so minor that she doesn't need to come back early for monitoring, so minor that she doesn't need to do anything differently,  but it is still a step in the wrong direction.  It is still an undesirable trend.  It is still not as good as last time.

Her echo was great.  Her EKG is showing some issues with the electrical system.  We got a list of symptoms to watch for--if we see any of them, we go back for a checkup.  We got a reminder of the importance of her scheduled checkups.  More than one reminder--Dr B may have said its not really a big deal right now but he repeated four times throughout the visit that we MUST keep her next appointment to get a new EKG and checkup.  Which, of course I was going to do anyway.  I keep a reminder in my phone about setting up the new appointment when the time comes (Oct 2019 will remind me to schedule the next November appointment).

So I keep reminding myself it was a good visit.  Don't borrow trouble.  And in two years, hope things have swung back to the "getting better" side of things.

Three years ago today......

At this time exactly three years ago, I was sitting by my daughter's side in the PICU watching her chest rise and fall, hearing the whoosh of the ventilator that breathed for her, watching the various monitors that told me her vital signs, seeing the steady drip drip drip of many medications feeding into her lines.  It had been a long and emotional day and we had been quietly sitting together for a couple hours at this point.  Early that morning I had handed her over to a surgical team, they stopped her heart, they repaired her heart, and they restarted that heart.  She had some rough moments that day--when they tried to bring her off bypass, she had heartblock and came back to me with pacer wires embedded in her chest and every so often the alarms would blare, telling us her heart rate had either dropped very low or soared very high.  But she was there, she was alive, and I waited.

Today, three years later, I sit beside her as she draws her pictures on scrap paper.  She loves to draw and it doesn't matter to her if she covers the backside of a piece headed for the recycling bin or draws all over a brand new sheet of paper.  She loves ponies and transformers, cars and twirly skirts.  She wants to dance her way everywhere and hates to take a nap in case she misses anything.  She loves to cuddle as much as she loves to go outside and practice kicking the soccer ball.  She is stubborn and sweet and energetic and just full of awesome.

Happy surgeversary, my love.

A trip to the dentist

With the boys, first dentist visits happened around eighteen months.  With Iz, though, I had so much trouble finding a dentist who would see her!  They hear "heart defect" and "open heart surgery" and they couldn't see her until she was five.  I wasn't too worried--until her front teeth started to discolor after several hard falls during some seizures.  I finally found a dentist a few months ago willing to see her.....and she was promptly fired as a patient after a very short first visit.  She was very anxious, would not sit in the chair, would not let them get a good look in her mouth.  Based on the quick look the dentist did get and my description of what happened and the timeline of the graying of her teeth, they advised I get her into a pediatric dentist who could possibly sedate her because she was probably going to need baby root canals to save the teeth to ensure her permanent teeth came in properly down the road.

Finding a pediatric dentist in my area that accepted our insurance was not easy.  But I finally found one and while we had to wait about a month to get an appointment, we went in today.  Iz was still anxious and not very cooperative but the dentist had several techs come in and between them and myself we held her arms and legs and head still so he could get a look.  She wasn't happy but she did get a very good exam and her teeth look great, even the damaged ones!  Much of the discoloration is actually now gone and they are returning to their normal color, they are not loose at all, there's no swelling in the gums above the teeth, and while he wants me to continue to keep a close eye on them, he believes she will be just fine.  Apparently you can bruise the tissue inside teeth--sometimes the blood that clots in there does kill off the tooth but if the circulation is good enough, it breaks up the clot and the discoloration goes away and the tooth is fine.  Looks like she just had some bruising and hopefully when we have her followup, the coloration on those teeth will be absolutely normal and that will be the end of it :p  Now that she is on a good dose of her seizure meds, she rarely has injury-inducing falls.  She falls, of course, she's only three, but when she used to fall due to seizures, she wouldn't put her hands out to break her fall and that's why she kept hitting her teeth.  Now, those hands come out and she sometimes gets a scrape or bump on her hands but that is way better than busting up her face :p

Tomorrow, we head up to the hospital for our new patient visit with the ophthalmologist (the one we've been seeing the past few years moved to California).  She is excited because she likes getting her eyes checked plus she packed up her snacks and things and can't wait to use the "lunch purse" we won from Mom on the Go's contest around Christmastime :p  S thought the lunch bag was a cool purse so they all call it the "lunch purse" now LOL 

B has a heart murmur

Today was B's first cardiologist visit.  He's been having some minor symptoms that could be linked to CHD (and that could also be many other things) and combining that with our family history (two siblings with CHD and a great uncle that died a week after birth), he got a referral to be checked out at the cardiology clinic that diagnosed S.

He did fantastic :)  He was very cooperative and followed directions really well.  His EKG was normal but the cardio wanted an echo as well because Iz and S both had CHD.  It turns out that B has a heart murmur--first I've heard about it!  But his echo went beautifully and they got many really clear pictures that show no defects :)  Our tech was very thorough and it took a long time but they wanted to be really sure he was okay!  So his murmur is being classified as an innocent murmur and he does not need follow-up care and it shouldn't effect him at all.

I was hoping for everything being normal but I'll take an innocent murmur over a more serious diagnosis :)

Water parks are fun! Until you freeze.....

Last week was S's birthday and one of his presents was an afternoon fun with his aunt.  They went to a waterpark and had dinner together and she and I thought they would spend hours at the waterpark.  It was a very hot and muggy day so the cool water would feel great.  He tends to get very cold in water so the hot weather would keep him warmed up so he could have fun.

Nope.  They were there for a very short time.  While everyone else was sweating, my poor boy started to turn blue from cold.  I  used to think his inability to handle very hot and cold was because he's such a skinny little thing but Izzy is a solid little girl now and she also can't handle extremes.  Makes me wonder if the (now closed) CHD cardio discovered a few months back is actually the culprit.  He still had fun, though, and went on his favorite tube slide multiple times and has been talking about it nonstop :)  He is hoping she'll give him a trip to the waterpark next year, too! 

Too chilly for fun!

Yesterday I took S on a field trip at school--we went to our local fairgrounds for Agriculture Day.  It was pretty cool for third graders--they saw demonstrations on tractors, planting, various animals, etc.  However, it was mostly outdoors and it was cloudy and fifty degrees with wind.  Wind chill put us at about forty-five degrees.  Not too bad for your average kid but S has never done well with cold unless he is extremely bundled up.  After an hour he was asking to go home and by hour two I was getting ready to take him to the bathroom so he could stand under the hand dryer :\  Before we went to do that, though, his teacher came up and asked if I wanted to take him home early because she could see his lips were turning blue.  So we went to Tim Hortons for hot chocolate and blasted the heat in the van for about half an hour until he was warm enough to feel comfortable :p

S and Iz are my kids that struggle with the cold.  I wonder if its related to their CHDs?  S's is closed and Iz's big ones are repaired or closed on their own but I still wonder if the struggle with the cold is connected. 

Two years ago today, I handed my 7 month old to the surgical team and spent hours waiting and worrying as they stopped her heart to repair it. By this time at night, I was by her side in the PICU where she was sedated and a machine breathed for her. Today, we celebrated with a trip to the zoo and she abandoned her stroller at our first stop (always always always the seals and polar bears) and walked the entire time. She's a bundle of energy and sass and always and ever a fighter. Happy OHS anniversary, sweetheart 

Our schedule is getting way too full.....

Its like the floodgates have opened.  I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off".  And since we switched to this new pediatrician, things have slowly trickled in.  We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*).  Seems like a lot, eh?

But now?  All of that stuff up there was over the course of almost a year.  But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations.  We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function.  Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues.  And she has her ophthalmologist appointment coming up as well.  B had his intake appointment with neuropsych and is scheduled for a full evaluation.  S is scheduled for an intake appointment with the same neuropsych.  I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too.  Plus all of our normal appointments :p  The next month is busy busy busy busy busy :p

S goes to cardiology

I have wanted the boys to get checked out by cardiology since Iz was born but the old pediatrician didn't feel it was necessary.  The new ped, however, seemed surprised neither boy had ever been checked out so she referred S and told me to remind her to refer B next time he has an appointment.

So off we went to the Children's Hospital on Friday for our just in case appointment to get the all-clear on S's heart.

First up was the EKG......which was abnormal :/  Honestly, I was expecting everything they did to be normal normal normal so it was a little nerve wracking to hear abnormal instead.  So off we went for a very long, very thorough echo where the tech checked and rechecked and got a second opinion on a couple areas of S's heart.

Good news!  At this time, S's heart looks great and there are no problems.  The cardiologist said that, in his experience, EKGs like S's are usually seen in kids who have had holes that closed on their own.  It causes a little rewiring of the electrical impulses and that causes the abnormal EKG.  We will never know for sure but the theory is S had at least one hole in his heart that is now completely closed.  S did have symptoms as an infant--sweating (particularly when nursing), falling asleep while eating, slow weight gain, rapid/loud breathing, fast heart rate, cold extremities and bluish tint to hands, feet, and sometimes lips.  But I didn't know then that those things could be heart related and the pediatrician at the time said they were normal.  I'm just glad that today everything looks good, even if we have a funky EKG :)

Waiting for his echo

Cora Saves Lives

Izzy and I wore our pink today but we never did get a good picture because poor Iz has a wretched cold and I will spare you the leaky nose pics.

But she had on her pink hearts and I had bright pink in honor of a beautiful little girl named Cora who was born four years ago today. A simple, non-invasive, and inexpensive test called a pulse ox would have picked up Cora's critical congenital heart defect and given her a chance at life. Instead, in just five short days, Cora's mum will be facing the fourth anniversary of the death of her sweet girl.

But Cora's mum has devoted herself to making sure Cora's Story is never forgotten and has been instrumental in getting pulse ox screening added in many states as part of the standard newborn screening panel. There are many moms and dads and advocates out there fighting to bring pulse ox to all states but today, I wish to say thank you to Kristine for sharing her beautiful girl with us and making sure other babies get the chance Cora didn't.

If your state hasn't passed a law to add pulse ox screening to newborn screening, write your representatives and ask them to support it. If you know someone who is pregnant, tell them about pulse ox. If you are pregnant, make sure your baby gets a pulse ox after birth. Congenital Heart Defects affect 1 in 100. While a pulse ox does not pick up all heart defects, it does catch many of the most critical and can ensure a baby gets much needed intervention soon after birth.

‪#‎CoraSavesLives‬

Cora's Story 

Have you taken the Pledge?

On November 30, 2009, a beautiful little girl named Cora was born.  Five short days later she would pass away at home, in her mother's arms, of an undiagnosed Congenital Heart Defect.  Cora's mother, Kristine, in honor of her little girl, is on a mission to spread awareness about CHD and has made it her goal that no other parent should have to get their child's diagnosis from the coroner.  November 30th has been declared Cora's Day in her hometown but Kristine wants to take things even further and make Cora's birthday a day of awareness.  So many people view CHD as a rare thing but it is the most common and birth defect.  CHD kills more than all childhood cancers combined.  And yet so many know so little about it......  Take the Pledge.  Demand a pulse ox screening at birth, let your pregnant friends know they should be asking for the screening, write your representatives and ask that they support having heart screenings to the newborn screening panel, learn the signs of a heart defect.  Heart defects are not just something that shows up at birth--it may take years or even decades before a heart defect is diagnosed and treated.  But knowledge truly is power--if you know what to look for and what to ask for, you may just save a life.

http://babyheartscreening.com/November30/  Click over and take a look at the Take the Pledge site :)   My grandmother had a heart baby who could not be saved.  We have come a long way in the last sixty years but there is still a long journey ahead--heart babies are still dying, some of them because they were not diagnosed.  Some day my own children may face this journey and I would hope by then the advances are even further along and diagnostics ensure all babies get treated asap.

The Birthday Girl

A year ago today, I went in for my regularly scheduled appointment at Maternal Fetal Medicine for one last ultrasound before Iz was scheduled to be born. It was Friday morning and I had just been released from L&D the night before where I had been admitted Wednesday morning for abnormal lab work. They had run a bunch of labs, monitored us overnight, treated me for fetal tachycardia that they never could explain, and then discharged me when everything came up normal again. MFM was surprised to see me because they figured having spent the past two days in the hospital being monitored, I would skip my appointment. We did my NST and headed for ultrasound and within moments we were being ushered out of the office and told to go straight for the hospital, to not even stop for a coffee (for the husband), and to please hurry. My amniotic fluid had gone down dangerously low and Iz needed to be born on the ninth instead of the twelfth. It wasn't a case of she must come out right now but it was a case of she must be monitored immediately while we wait in case it does become a case of RIGHT NOW.

So off we went and we waited. And waited. And waited. Originally, we were just waiting for an eight hour window since I had last eaten but we kept getting bumped for emergency c-sections. I was hungry and uncomfortable (those beds in pre-op? awful awful things.....) but I was glad to not be an emergency--meant my girl was doing ok in there, despite the problems (kinda prophetic, huh? We would spend months being glad that while things were bad, they weren't as bad as they could be....). Finally, at 7:52pm all 7lbs 8oz 19inches of her was born and we had many cuddles :) It would be nearly twelve hours before someone would say the words "heart murmur" to us and two days before the words "open heart surgery" were first heard. For those few hours that closed out the ninth, though, we were getting to know this perfect little being who was a champion nurser and cuddler with the pink skin and blue eyes and dark hair.

One year later and she has lived through and conquered more than some people do in a lifetime and I am in awe of her. Heart failure, failure to thrive, open heart surgery, recovery. For the moment, she is doing great and that is enough. Whatever problems may arise in the future, whatever complications or delays may or may not happen, they are something to worry about another day. Today was all about doing the things Iz likes most :)

First up, her favorite meal of the day--breakfast. We took her out and she enjoyed packing away more food than normal :p She usually sticks to eggs and toast or pancakes but today she was feeling adventurous and she snitched bacon off my plate and became a fan, she tried a couple kinds of sausage, she ate some quiche, she tried some yogurt again (last time she was so not a fan, this time she asked for more), and some ham (which she does like but for dinner or lunch).

Next up was the zoo :) She loves activities that involve being pushed around in her stroller LOL

Today was also the zoo's Day of Honor so we got to see firefighters, police, military dogs, the navy, the marines and I am sure there are more I am forgetting. Iz flirted with everyone and the boys enjoyed getting into every vehicle they could ;)

Iz's favorite part of the zoo has always been the elephants and our zoo has four of them so we spent a lot of time watching them :) Usually if we stop walking, she will squawk at us to get moving but if there are elephants, she will happily sit there and just watch.

She slept all the way home :) Being pushed around looking at animals is exhausting!

Next activity was to play in the yard. She loves to try to climb her brother's toddler slide and to crawl around and to try and pick my tomatoes :p

Next stop was Grandma and Grandpa's for some BBQ and then home for presents!

She had lots of help from her brothers ;)

And in the end only really cared about the ribbons.....

I think the whole cake thing may have scared her

But before we could even get her dress off, she had leaned forward and helped herself to a big handful of cake :p She was quite mad at us for cleaning her hands so we could get her dress off unstained :p A piece of cake calmed her right down, though

Wish us luck....

Tomorrow morning Iz has her three month visit. Well, slightly over three months since her cardio was on vacation when she hit the three month mark from her last visit (two weeks after surgery, one week after discharge). She has been doing well--off her meds, less sweating, less hard and fast breathing, more energy, more weight gain. And, yet, I am nervous. So many what-ifs. What if the patch is leaking, what if the heart is still significantly enlarged, what if the stenosis in the PA is worse. What if what if what if.

We will know soon enough, eh?

A link

I have a couple of posts rattling around in my head that I haven't had time to get to. But I just wanted to pop by for a quickie update and to share a link :p

Update: We had a lovely time celebrating S's birthday in the Chicago area--the heat kept us from doing some things we had wanted to do but we amused ourselves in other ways and spent a lot of time in the hotel pool :p Iz LOVES the water and I do believe she would have happily lived there for weeks on end :p Trying to settle back into routines and put things to right afterwards, though, has been a bit challenging :p

And a link: Picture that helped save thousands Before Iz, I had no idea how common CHD is. I did not know that the simple little pulse ox that I get every time I am sick (I have asthma) could save a babies life by helping to diagnose CHD. Even thought my boys are fine, I wish I had known to ask for this when they were babies. I wish we didn't have to know to ask for this, that it was a normal part of newborn screening.

Rest in Peace, Baby Rowan. Thoughts and prayers to your family as they mourn the loss of their beautiful heart baby.

It is all a jumble...

Iz certainly has been keeping me on my toes--she has wanted lots of handholding and head rubbing and foot tickling since she couldn't be held. When she fell asleep, I pretty much was asleep, too, and when I was awake, I was pumping and not able to do proper updates :p So I'll do a little rundown of the past few days but it may be a bit of jumble as my mind is already forgetting some of the timeline! Sleep deprivation or just the mind fuzzing up some very scary days?

So after they took her off the vent, she was doing great on room air but later on her sats started to drop so they had her on a nasal cannula. They were able to start weaning her off it fairly soon but she just would not leave the cannula alone and it was really upsetting for her so they switched her to blow by oxygen (big blue tube aimed at the general vicinity of her face) and she stopped needing it last night :)

When she got cleared to eat, she took about 100ccs from a bottle--gulped it straight down. We thought, great, now we don't need to worry! The bottle hater drank her milk! But she wasn't going to let us off that easy :p The next feed, she ate about half and fussed at the nurse the whole time (she gets mad if I hold the bottle--the first time Dad gave it but he was at home with the boys for the next few feeds). The third, she fought the bottle and took about 20ccs. Dr W thought it was important for her to get a chance to nurse because she was so upset and stressed over not being held and being offered a bottle. Up to this point, she needed sedation to calm down and sleep. So he ordered that she get as much stuff taken out as possible so we could more easily and comfortably move her (they normally don't get babes with chest tubes out of bed). So they removed her arterial line, her catheter, and her pacemaker wires. They couldn't remove the central line because she was still needing potassium (her levels were all over the place). So I got to hold her and she had a few swallows but she was really uncomfortable from the central line and chest tubes so she mostly just wanted to cuddle and complain to me. But when she went back to bed, she slept for several hours without sedation--woo! Her second attempt was about the same with some serious gassy tummy pains added in--but again, she cuddled, and an added bonus of a whole bunch of burps and farts to move that gas out as well as some coughing (they need her to cough to clear out gunk from being on the ventilator). She may not have gotten much food but it sure was a good boost to her morale and physical needs. She didn't need the sedative again after the first time I held her.

Since she wasn't able to nurse enough, they put in a feeding tube and put her on a continuous breastmilk feed--they cut it back to 100cc feeds every three hours the next day. She had a great day--was in a fairly good mood, gave me some smiles, enjoyed watching everyone who went by. Was able to wean off some meds and be almost weaned from others. Switched to oral meds for a few things. Last night she had a great potassium reading and it held steady and remained great so this morning the central line came out :) During rounds, Dr W said her chest tubes were finally ready to come out (they had been draining out too much fluid to come out the day before like they had hoped. But after I held her, the output just dropped off and stayed down (one stopped draining completely and the other was below the threshold for having tubes out--Dr W was right about her needing to be held and getting a chance to nurse. She made so much progress once she had her emotional needs filled :) ). So she was supposed to get her chest tubes out and then her feeding tube so she could nurse. Within ten minutes of them leaving, she wiggled her way down the bed until she could reach the feeding tube when no one was looking and pulled it out--she was in restraints to stop that from happening but she worked around it ;) She then attempted to pull out one of the chest tubes but those were stitched in.

Her first attempt at nursing resulted in a few swallows and a lot of cuddles. Her second attempt ended in a milk coma :)

She is ready to be moved to the step-down unit but they are not sure if they will have a free bed tonight so we may be in ICU one more day. It is possible she could go home tomorrow or the next day :)

Grandma

I have been thinking of my Grandma a lot lately.

When my Dad was about S's age, my Grandma had her fourteenth child, Jeffrey. He never came home from the hospital. My Grandma barely spoke about him and when she did, she was so sad that I never wanted to ask questions and find out more. My Aunts and Uncles and Dad rarely spoke of him either. He is buried a few miles away from where I grew up, in a cemetery by the river that holds several generations of family.

When my Dad had his accident just before Thanksgiving, he talked a lot about his brother and Mom while he was on painkillers. The kids were excited about the baby coming home. When Jeff didn't, my Dad talked about how hard it was on his Mom, how sad she was, how much the other kids were hurting, too. My poor Dad, my son's age, looking forward to a baby that never came. I think about how excited S was about each of his siblings, but especially Iz, and I can't even imagine him having to mourn the way my Dad did.

I sit here beside Iz, ready to hold her hand or comfort her whenever she stirs and I wonder if my Grandma got that opportunity. Did she stay by Jeff's side and cherish those few short days she had him? Or did she have to go home and care for the rest of her children? How my heart breaks for her, losing her baby.

My Dad wasn't sure why Jeff died but after Iz was born, one of his older sisters told him Jeff had heart defects, she couldn't remember which, but they were bad enough that he only lived a week. When I heard, I held Iz close and thanked God that today, fifty-some years later, doctors know how to fix so many things. I think my Grandma would hold Iz close, too, and be grateful that her beautiful great-granddaughter will get the chances Jeff never did. Grandma would have adored Iz.