Newborn Heart Defect Screen Awareness Day

I had big plans to post something new about today all day long to get the word out there but with 2 busy kids this was put on the back burner lol.  So, since we're already 1/2 way through the day I'll stick to just one post.

This is a quick video about Newborn Pulse Ox screening.  If you or someone you know is expecting a baby please watch and share this!  It could potentially save a little one's life.  Pulse Ox screening is very simple, very non-invasive, and very quick.  There is no reason NOT to do this for our babies.

I don't remember if I've mentioned here that we are expecting our third baby in February.  Yes, quite a shock for us!  Our little family of 4 is growing to 5 in just a few short months!  I have done tons of research and after having 2 babies already I know what I want and what I expect at the birth of this third precious one.  One thing is certain:  I WILL BE ASKING...NO, DEMANDING...THE NEWBORN NURSERY PUT A PULSE OXIMETER ON THIS NEW LITTLE ONE WITHIN 24 HOURS OF BIRTH.  I don't expect to deliver another heart baby, this one should be perfectly healthy and fine like it's big brother but you absolutely can never be positively sure about this.  I am terrified of taking a new baby home without knowing that the Pulse Ox test is perfect.

Please watch this video :o), save a baby's life :o).


HaPpY DaNcE!!!!

Miss K had a hard weekend.  She had a high fever for 3 days and was just miserable but had no other symptoms, we were clueless as to what she was fighting.  And as always, the fever caused SVT...twice.  We made it 2 weeks without SVT and we were so happy!  And then it ended with 2 episodes in 2 days caused by a fever.  I wasn't worried, didn't think I'd even count these episodes and certainly didn't plan on calling the EP Cardiologist to tell him about them.  But Saturday night Miss K had a suspicious lump appear on her leg, where she had recently gotten a vaccination shot.  I wasn't sure if it was her Chicken Pox Vaccine or the MMR Vaccine but seeing this made me quite sure that was the source of her fever for whatever reason.  We waited and watched Miss K through Saturday night and all day Sunday.  She happened to wake up Sunday morning fever free and feeling great!  But the lump was still there, bright red and suspicious looking.  Monday was much the same as Sunday but I decided to call her Pediatrician anyway, they got us in to see the physicians assistant early in the morning.  The PA was a bit concerned about the lump and the fever but when I told her about the SVT she grew the most concerned and opted to go chat with our pediatrician about what to do.  It turns out the fever and the red lump on Miss K's leg were related, it was a perfectly normal reaction to the MMR Vaccine and nothing to worry about.  But the pediatrician was very concerned about the SVT episodes.  He said that clearly the Digoxin was not working and that this weekend was a good trial run to let us know sooner, rather than later, that Miss K needed to be back on the Amiodarone ASAP before she caught a nasty virus.  Apparently there are a few really nasty cold and flu viruses going around town and he's seen way too many cases with extremely high fevers and horrible symptoms.  He was worried about Miss K dealing with actual symptoms of a virus as well as a fever and SVT on top of it all and predicted finding her hospitalized because of complications.  He ordered me to call the EP Cardiologist that day and tell him about our weekend.

So I worried.  And I called the EP Cardiologist as soon as we got home.  I also cried and stressed.  I was certain Miss K would be fine and that SVT with a fever was just her normal.  Something we can't control. Period.  But the pediatricians reaction had me doubting my instincts.

It took 2 days for the EP Cardiologist to get back with me.  He finally called me himself thank heavens.  His reaction:  Miss K is fine.  The Digoxin is working in his opinion, it's a great sign that we made it 2 weeks SVT free after such a long stretch of weekly SVT episodes.  The fever induced SVT means nothing to him.  He said it's to be expected with a PJRT child.  He did not need to be reminded that while on the Amiodarone Miss K was having SVT with fevers.  He feels that no matter what medication we have her on she will still have SVT with a fever and it's not something we can control at all.  He did mention that putting her on the Amiodarone would help to better control the SVT but he doesn't feel it's necessary, the risks of being on it far outweigh the risks of not being on it.

I cannot even begin to describe my feelings while I spoke to this wonderful man!  I instantly teared up hearing that he knew Miss K was fine.  It was such a relief to be told Miss K will not be hospitalized any time soon and that the Digoxin is more than likely working just fine.

I admit...I did a happy dance...a rather embarrassing happy dance ;o).  I'm glad I was all alone to have my moment of celebration so as to avoid being laughed lol :o).

Here's to a long weekend with family and feasting, worry free!  I hope everyone has a wonderful Thanksgiving full of family, friends and happiness!


Miss K Update

Miss K's EP Cardiologist was in the Cath Lab all day the day I called to speak with him about Miss K's more frequent SVT episodes so he never called back.  I called the next morning to make sure we hadn't been forgotten and within an hour he returned my phone call.

And the verdict is...

Miss K is now taking 1.2 mL Digoxin twice daily along with her Propanolol 3.2 mL 3 times daily.

The conversation was a bit discouraging and brought a lot of questions to mind.

The EP Cardiologist is hoping the Digoxin will help make her SVT less frequent and easier to manage but he isn't guaranteeing it, he actually doesn't think it's going to do much for her but he's willing to try it as it's the easiest option to try first.

IF the Digoxin doesn't work, and we will know within a week if it's going to, he is going to schedule to have Miss K hospitalized at Primary Children's Medical Center ASAP.  She will be hospitalized for observation only as they start her back on the Amiodarone at a very low dose, most likely back to the small dose she was on when we stopped giving it to her.  The reason for hospitalization is to keep her on constant EKG monitoring to make sure she doesn't react to the Amiodarone any differently than she was when she was on it before.  They have to make sure her heart rate stays at a steady and safe pace without any extra beats or anything dangerous.

I have cried over this for a few days.  I'm trying to be hopeful the Digoxin will work, I really want it to work.  But the EP Cardiologist was so sure it isn't going to work that he has discouraged me.

The thought of hospitalizing Miss K for any amount of time is terrifying and a bit depressing for me.  He estimated it could take 3-5 days before she can be released...with Miss K's track record I am scared it will actually end up being 1-2 weeks or more.  I mean seriously, how can I be hopeful that 3-5 days is going to be it when we were told 24 hours was all she needed a year ago and we ended up there for nearly 4 weeks?!?

The bills alone are terrifying to me.  If it needs to be done it needs to happen before the end of the year so we can take advantage of our insurance deductible being maxed out, this would help immensely.  But doing it before the end of the year puts us at risk of ending up staying in the hospital through the holidays, very much not something I'm not willing to risk.

Having a 3 year old son at home and being 7 months pregnant is also terrifying.  I really can't imagine sitting in a hospital room for days, or weeks, with my baby while my 3 year old is being taken care of by someone besides me and while I'm trying to deal with pregnancy hormones.  We have a lot of family who can help us with our son, the issue we'll be dealing with is that Big Brother is in Preschool two days a week and I am paying more than we can afford to have him there, we cannot have him skip days as they are not refundable.  Whomever gets to watch him for the duration of Miss K's stay is going to need to take time off work and away from their own families to come sit with him at our home so they can take him to school and try to keep up some kind of regular routine so he won't have a flip out moment about having Mommy and Miss K gone together again.

And the most terrifying thing for me is sitting in a cramped hospital room with my wiggly, very busy, very mischiveous, 15 month old baby girl.  There is no way they are going to get her to leave an IV in, and we know they will require an IV for her stay.  They will not get her to stay in a bed for any amount of time other than sleeping.  She is the most dramatic baby when it comes to eating and I can't imagine trying to get her to eat there in the hospital.  All I can see is stress.  And tears.

We can use all the prayers we can get that we can avoid the hospitalization option!!!!  I have days I feel good about the Digoxin and other days I cry thinking "it's not going to work just because we're due for another trial in our lives and this is it."

On a bit of a lighter note.  Daddy and I have been in search of a good, reliable Pulse Ox device to purchase.  We have not had much trouble finding them but we have had trouble finding a good price that fits our budget.  The ones that are most affordable are not as reliable with pediatric patients as we need it to be.  It took us over a year to finally decide to break down and purchase one.  We were not in a hurry before since Miss K was so young and we were not inclined to leave her with anyone for any amount of time because I was breastfeeding her and also her SVT episodes were very infrequent, averaging one about every 3 months or more.  But now that she is giving us SVT troubles again, and she's old enough for us to be more prone to leaving her, and Daddy and I have not had enough date nights or time away from the kids lately, as well as the fact that baby #3 is on it's way come February and we WILL be leaving Miss K and Big Brother with family during the delivery and for nearly a week afterwards (I have c-section deliveries so the hospital stay is at least 3 days, usually 4), we are needing something to help us be more comfortable leaving Miss K with someone for more than an hour or two.  Having a Pulse Ox in the diaper bag with clear instructions on how and when to use it and what to do if her heart rate is too high is likely to make Daddy and I at least a bit more comfortable with the thought of leaving Miss K with a sitter.  A stethoscope is great but only when the person using it knows what Miss K's heart sounds like when in SVT and it's not a sound that's easy enough to describe.  Getting Miss K to sit and be quiet for a whole minute in order to count out the beats is nearly impossible so we are not willing to just rely on a stethoscope for family and sitters watching her.


Miss K is 15 Months

Time sure flies...I wish we could hit pause for just a bit and keep them little a bit longer than they tend to stay little on their own :o(.

Miss K is doing well.  She had her 15 month Well baby exam today with her Pediatrician.  She now weighs 18 pounds and is 30 inches tall, seems they are a lot more accurate with these measurements than the Cardiologist is ;o).  She is perfectly healthy and developing right on track in every way.

Her Pediatrician was concerned about the frequent SVT episodes.  I have been putting off calling the Cardiologist hoping that they will stop with time but she is still having about one a week.  The Pediatrician told me to call today.  He's worried that the longer we let her heart go into SVT regularly the harder it is going to get to control it with medication, he's afraid her heart is going to get in the habit of SVT episodes :o(.

So I put a call into the Cardiologist as soon as we got home.  I'm waiting to see what he says to the nurse, so far I've talked to her and let her know what's going on and she has yet to call me back, I will update this post as soon as I know what we're going to be doing.  Hopefully we just up the Propanolol a bit more first before he suggests anything more aggressive.  Stay tuned!