Whirlwind

Lots of stuff has happened since the last time I blogged, so lets just start at the beginning or in other words,where I left off last time.

Well I went in to see my PCP to have the wrist checked out.She was sure that it was a cyst but she was reluctant to do anything about it. If she drained it,the "shell" would still remain and it would likely return.If it was removed it could still come back. So she sent me to a hand surgeon who actually doubled as a plastic surgeon.

That appointment was very quick. He came in to the exam room,examined the wrist and determined that it was too small to do anything.Plus with my medical history he was reluctant to do anything that could compromise my health further. So he told me to keep it wrapped up and come back in 2 months if it hasn't gone away yet. I have another appointment with him at the end of January. The cyst is still present,roughly the same size and still causes discomfort.

Next came the Electrophysiology appointment. First impression was that he was SUPER smart and not unattractive either. He immediately began discussing the possibility of a catheter ablation to attempt to cure the Afib.I told him that I wanted to go home,talk to my family and research the procedure throughly. So I made an appointment for 12/20,which of course was yesterday.

So yesterday I brought along my mom & grandmother so they could meet the new guy.He explained the catheter ablation procedure more throughly. He answered many questions.He even explained that I was in 1st degree heart block as well as the fact that I had a majorly screwy conduction system. This is why I cannot take any other medication-because it wouldn't work properly.

He also said that according to my records I had had Atrial flutter in the past but he had seen none of that in my EKG's,either past or present. He also said that the Atrial Flutter ablation is simpler but carries with it a 10-15% chance that I'll need a pacemaker sooner.He also said that in the next 5-15 years I'll be facing a pacemaker anyway but because of my age,he wanted to prolong that as long as possible.

After he was done talking I told him that I had made a decision and I wanted to go for the Afib ablation. So I went to speak to his scheduling nurse and she got me on the schedule for February 11th, 2013.I'll need a few sets of bloodwork (including a pregnancy test) & a CT scan first and those will be completed by mid January.

So I'll keep you updated on everything that goes on in the next 5-6 weeks!

Sick of medical issues

Well I guess it's been awhile...

I ended up staying off Facebook for 5 full days. It was exhilarating and VERY much needed. I'm back on Facebook but I have decreased my involvement with these families for my own sanity. It has been easier now that I am not throwing my entire life into helping and supporting these families.

Well October brought MANY things. Recurrent Arrhythmia issues for one.I was having problems at least once every 2 weeks. Finally on October 11th I went into an Atrial Fibrillation episode that went on for 16 hours even with my medication. So on the 12th I called Cardio and he told me to go to the ER.

So to the ER we went. They didn't have a bed for me. So I had to wait...and wait...and wait some more. Finally they got me in to a room.I changed into a gown (such sexy gowns they are!) Then they hooked me up to a monitor and put me on o2 (despite my sats being at 98. Stupid hospital protocol)

Then it was IV time. My nurse only had to stick me once for the IV (Yay!) So then we waited for the respiratory team (There always has to be an anesthesiologist & a respiratory person in the room before the cordioversion is done) I was given the stuff to make me go to sleep. Later I would find out that I talked about flying and that I cursed out the beeping machines when I was totally out of it.

After it was done they made me wait two hours before I went home.However when I got home the Atrial Fibrillation started up again and it went on all night (By some miracle I was able to sleep through it) The next day I went in and out of it some more and my cardiologist upped my dose of beta blocker at least until I was able to see him.

3 days later I was in my cardiologist's office and he told me to eliminate the triggers for a month (Stress,Caffeine,MSG etc) and then to slowly one at a time reintroduce them back into my body. I had coffee for the first time in 5 weeks yesterday and no issues at all! The stress thing was something else however...

After talking to my family I decided to drop all of my classes.I hated having to do it but I just wasn't feeling well enough to do school. I was frustrated and annoyed that my heart had interrupted my life for the first time in several years.

Cardio also said that the AFib could also be caused by scar tissue and given how many time my chest had been cracked open,he wouldn't be surprised if that was the reason. Cardio also ordered an echo which I had done the following day. He just wanted to make sure that there was nothing new going on structurally with the heart.

He also sent up a referral to an Electrophysiologist-someone who deals with abnormal heart rhythms.I just recently got a call from the EP's office and I have an appointment December 5th. Cardio wants to see me after I see the EP so we can talk about the appointment.

I have an appointment with my primary care doctor this coming Monday to discuss a very painful lump on my wrist. I think it's a simple ganglion cyst as I have a history of ganglion cysts but this one hurts whereas the other ones did not.

Looking forward to Thanksgiving this year! For the first time EVER I am making the stuffing on my own!

Happy Thanksgiving to you and your family!

Day 3

There is really only one way to describe my day without Facebook in it.

Peaceful.

I never thought I'd feel like this again. Not constantly being bombarded with pictures of kids that I'll never have,relationships that I don't have and marriages that I am scared to have is SO peaceful. Not only that but to be blissfully unaware of any sort of "FB Drama" is an amazing feeling.It's like a weight has been lifted off of my shoulders.

Taking a Facebook break has allowed me to focus not only on my hobbies and interests,but it has allowed me to take a much closer look at what and who I want in my life. I do have a small circle of real life friends who are supportive and loving and who I know would be there for me if I ever needed them.

And then there's the guy. I know I'll take a lot of flak for this but this guy and I have been friends since he was eight and I was ten. As teenagers we dated.It was a whirlwind romance that included an engagement.At the time I couldn't have been happier,but a month later I realized that I was not ready to be engaged and we broke it off.

We didn't speak for several years until he started dating this girl.She was much more into him than he was into her.It was almost an obsessive level.He ended things with her shortly after I told him that if he didn't feel that strongly about her,then he needed to end it.

We went a few more years without talking.And suddenly in the Fall of 2006 we began rekindling what we had once had.He even went as far as to say that if I was to get married,he wouldn't be able to be there because he'd wish that he was my groom.

I was scared of failing at the relationship so I put the kibosh on things before they ever really got far. 2 years later we talked a few times. He had met someone and he was crazy about her. I wasn't jealous.Not at all.I wanted him to be happy and this girl clearly made him happy. That was ALL I wanted for him.

In the Spring of 2010 I got a call from his mother.His longtime girlfriend had died while waiting for a heart transplant. I was heartsick for him. I knew by his recent (3 months earlier) holiday card how absolutely head over heels in love with her he had been.That's when I reopened the lines of communication. I wanted to make sure that he was okay.

Now its nearly 30 months afterward and we still talk on a weekly basis. If she had been any other girl.If the relationship hadn't been so obviously full of love,I would consider reconciling with him.He has made it clear that he'd be open to it,but as of right now he's just not ready.I'm just not wanting to live my life being compared to the woman who died and I'm terrified that I will always be compared to the woman that he was head over heels in love with for nearly 2 years.

...But I also don't want to live my life wondering "what if..."

It doesn't help that my mom asked about him the other day.I looked at her like she was crazy.She had never liked him or his family so I don't know why she was even asking about him.

What if that was a sign?

This time away from Facebook is causing me to think a lot about different things. Actually I think obsess is a much better word.

And now I think this blog post is the longest blog post I've ever written.

Oh well,back to contemplating things...

Rediscovering Me

Rumors are ugly and mean spirited and a big part of why I have taken a step back from the heart community. Make no mistake,I love all of the heart families that I have grown to know,but this...hiatus if you will was long overdue. In the past I had said that I was going to take a break and my breaks never lasted long at all.

When I realized that I was losing me,was when I knew I needed to take a break. 25 months ago I jumped in wholeheartedly (no pun intended) into the heart community.I offered advice (when asked) I shared my experience and I was there whenever anyone needed to chat. I was there so much for others that I forgot to take care of me. I am a daughter,sister,niece,aunt,granddaughter,woman and friend before anything else. 

Yes I do have a heart problem but I am much more than that.In fact I don't think about my heart stuff much at all.Maybe that's because I am doing so well.Maybe it's because it was such an open topic when I was little. I'm just not sure. 

I'm only on my 2nd day of my self imposed hiatus and I have to say I am more relaxed and I'm returning to the things that I loved to do before I got sucked into the online heart community. I've even discovered a new passion. I love being in the kitchen. Cooking or baking is incredibly relaxing and it allows me to get lost in what I am doing. I usually have music going as well so that really gets me going. I am going to try to do a new thing in the kitchen at least every other day.

I don't know how long I'll be away from the online community. I just know that right now I am rediscovering passions and reexamining priorities in my life.

Belated Cardio Appointment Update

So sorry I haven't posted an update about the Cardio appointment in July.

The long & the short of things is that my heart is looking good. The Ejection Fraction is 56% Usually they think anything above 55% is good for a person with a perfectly formed heart.So for me having a 56% that's pretty darn exciting. When I had the echocardiogram done in February, the measured Ejection Fraction was between 45-48% So the Cardiac CT gave us a much more accurate number.

The conduit is looking good. It is not stenotic and it does not have any thrombus in it. My cardiologist does not believe that it will need to be replaced anytime in the near future. The mechanical valve also looks good and it has good function.

The left ventricle has moderate concentric hypertrophy.The right ventricle is mildly dialated with moderate to severe hypertrophy.

I still have a residual VSD that is 3mm. The VSD is located in the sub-pulmonic location. My cardiologist believes that if and when it needs to be closed,that it can be done via cardiac cath (yay!)

I have an aneurysm in the brachiocephalic artery.It is small enough that nothing needs to be done to repair it right now.

I will go back in to see him in January.

Seven years ago

Seven years ago today I woke up at 4:30 am so I could play on my computer before we left for the hospital at 5:00am.I needed to check in at the hospital at 5:30.Thankfully we lived very close to my hospital so we got there by 5:15 and by 6:00am I had signed all the consent forms and everything (since I was 19 it was my first time signing all the forms and I was freaked out)

I don't really remember much about the waiting in the preop area. I remember some nurses coming down to see me from the pediatric floor (We had made the decision that I would recover in the pediatrics floor because that was the floor that I was most comfortable with) I remember the IV going in and how uncomfortable it was. The last thing I remember was the anesthesiologist coming into the preop area to give me some Versed to relax me.

The next thing I remember is waking up in my room and finding out it was two days later. I had my surgery on a Monday & it was now Wednesday. I had been extubated on Tuesday but I don't remember that. I remember asking for Sprite right after I woke up on Wednesday and the nurse brought it to me but I couldn't keep it down. I had a second cup of Sprite and that came back up.So the nurse decided we would stick with water for awhile.

On that Wednesday I sat up a bit and had the first of two chest tubes pulled. I don't remember any other lines coming out but I know they did. I got stronger as the days passed. I had a transfusion either Thursday or Friday.Doctors were still trying to calm my heart down.I was having episodes of arrhythmias daily that they couldn't stop.

Saturday I had my Foley catheter removed. Nothing else remarkable on that day. Sunday I stayed awake for a long period of time. Monday I was able to go down to the family room and eat dinner with my mom, 4 year old brother and the rest of my family. My brother kept trying to push the buttons on the IV stand.

It wasn't until we got back to my room that I noticed that my IV site was bleeding.My favorite nurse Fran, who is now in IV Therapy now put a new IV in.I do remember asking why a new one needed to go in because rumor had it that I was being discharged the following day. I was told that it was precautionary,

The following day another favorite nurse of mine by the name of Katie was my discharge nurse.It seemed to take forever to be discharged. I know that discharge usually does take awhile but it seemed to take even longer this time. By early afternoon I had been discharged with an appointment to see the surgeon & my pediatric cardiologist very soon.

I was sent home on:
Captopril
Coumadin
Lasix
Sotalol

I think there was one more but I'm drawing a blank.

I spent a total of 8 days in the hospital this time. I probably would have went home sooner but they could not stop the arrhythmias so I stayed a bit longer. Even so,the 8 days was the shortest hospital stay following OHS that I have ever had.

Happy Anniversary to me!

Lesson Learned!

My faithful readers and friends may recall two months ago when I made amends with a friend.You all may recall that I forgave this person and I was willing to re-establish our friendship. Now I know that I should not have done that.I had prayed to a God that I am not sure exists asking Him to tell me what to do. He told me to forgive this person.

Well that's the last time I ever pray because I did what He told me to do and you know what? I got burned in the process.This person is not worth my time or my friendship. They are a liar and just plain old cracker box crazy.

Sometimes you can forgive someone and things can go back to the way they were and sometimes you learn that there is a reason that this person slips in and out of your life.

I choose to focus my time,energy & love on people who I know have a good heart. Thankfully I have some amazing friends in real life who would stand by me no matter what.

Relief

When I got the news on June 14th I just felt a flood of relief. Tears streamed down my face and I thanked a God that I'm still not even sure exists. My niece did not have some crazy GI disease.She simply had a milk protein allergy.That was something that was much easier to deal with.

I had never felt so relieved in my life. I had been so scared for about a week while we waited for the biopsy results.I had armed myself with lists of information.I had stayed up into the wee hours of the morning doing research after research.Looking at all sorts of things.

When I got the results my first thought was relief but my second thought was that I had wasted a lot of time doing a ton of research.But then I quickly snapped out of that thinking because I knew that all the research I had done was not a waste of time.If my niece had been diagnosed with this GI disease I would have been a VIA (Very Informed Aunt)

Even though I have not had the chance to meet my niece yet,I know that she knows how loved she is by everyone in our family. I know how relieved we all are that things turned out in the best possible way.

First family picture.Just looking at this makes me smile. I love you three!

The Waiting Game

I've played the waiting game before.

But this time it's so different. We aren't waiting for news about my health at all and if possible playing this waiting game is even worse.

We're waiting to find out the results of a biopsy that was done on my ten week old niece.

Yes you read right...My ten week old niece has already undergone more than she should have at her young age.

Now we have to wait three to five days for the results.I know the waiting is hard on me,I cannot even imagine how hard it is on my sister.We texted for a bit last night and I could tell that she was scared.

I reminded her that it's okay to cry (as a matter of fact I'd been crying most of yesterday) and she informed me that she had been crying.My heart ached for her.I wished so much that I could be with her,holding her hand,letting her cry on my shoulder.When I told her that,I could practically hear the tears when she texted back "I wish you were here too"

Last night was unbearably hard for me.

I struggle daily with God's existence and this certainly has not changed.I would trade places with my niece in a second.I don't understand how a higher power could allow this type of thing to happen to a tiny baby. Why not the rapists & murderers out there?

Why my niece?

An Aunt's Fear

When I first learned that my half sister was expecting I was thrilled.Our half brother had recently welcomed a son and I was so glad to know that our extended family was getting even bigger.I hounded her and hounded her to talk to her OB about my heart history and to keep a close eye on the heart.When she went to into labor at 32 weeks I was sick to my stomach.I spent much of that time crying.I was scared and not being able to be there with her only made it worse.She miraculously kept my niece safe inside of her for six more weeks. Lillian Renay was born at 5:25 am on March 30th.I was relieved to know that my new niece was healthy.

During the first two and a half months of her life,she had had a lot of GI concerns.I wasn't scared until I saw today's picture.She's back in the hospital.My sister is scared and she needs answers. Right now doctors only think they know what's happening. Nothing is definite yet.Again,I'm scared and not being able to be with my sister is awful.My whole heart is with them right now.I need answers too.Not as much as my sister does but I am one scared aunt here.

I think it's probably a good thing that I am not there with my sister and the baby.I would be hounding the doctors.They would probably run far away from me.

Please pray for some definite answers for my sister and her baby.Whatever it is,I will be there in spirit when I can't be there in person.When I can be there in person,I will be.

Love is Love

Last night I had just finished re-watching an episode of Grey's Anatomy where a lesbian wedding takes place and I couldn't help but wonder if my very Catholic grandmother would find it in her heart to attend my wedding if I fall in love with a woman. I don't want to get married without her there,but I don't want her to be there if she can't support me.


My grandmother has been there for me from the very beginning. She helped my mom raise me. She stayed nights with my in the hospital.She bombarded the doctors and nurses with countless questions.There's no doubt in my mind that she loves me and that she would lay down her life for me in an instant.


But will she love me as much if I fall in love with a woman? Will she find it in her heart to attend my wedding? Those were the questions that plagued my sleep last night.

I can't imagine getting married without her.Yet I don't think I could make the woman I love wait until my grandmother dies to get married.

I wish I could be certain that I would have her acceptance but I can't be. But I don't want to hide in the closet from her anymore. I want her to see that no matter who I love,that I am still her granddaughter.

That will never change.

Mish-Mash

Well my CT results are in and the good news is that I am not in Left Sided Heart Failure and my EF is 48% Bad news is that I have 2 aneurysms.One is 3.2 cm & the second one is 2cm.Right now they will just keep a very careful eye on them. They won't repair them until they get to about 5.5cm. My conduit looks good as well (another yay) So no surgeries in the near future!

But what I really want to talk about is the subject of interrogation. I have the utmost faith and confidence in my medical team and if they didn't think something was in my best interests then it wouldn't be done.They plan to keep a close eye on the aneurysms by yearly CT. Having someone question that decision today pissed me off.Of course we discussed the risks and benefits and my cardiologist and myself both agreed that the benefits of yearly CT scans FAR outweighed the risks that come along with radiation.

I never would have agreed to something like this unless I understood the risks and to say otherwise is a slam against my intelligence.Exchanging information is one thing but to immediately start questioning the decisions I made with MY medical team makes me livid.

So parents remember that the Adult CHDers that you know or are getting to know are likely just beginning to take over their own care and they need compassion,not interrogation.Adult CHDers,remember to be kind to one another.Some of us are still learning certain things and MANY of us like our cardio team and have faith in them and the decisions that are made jointly.

Everyone is different.Every person.Every cardiology team.Every CHD and every plan.

Remember to respect one another.

My nightmare

Ever since I had my cardio appointment on April 30th and learned that my left ventricle had decreased function I have been scared. I saw my echo report 2 days later and my fear only intensified as I saw the words Indication: Left Sided Heart Failure. My mother assured me that he had only written that on the report so that we could get the Cardiac CT approved by insurance without too much BS. I wasn't so sure about that.

Last night I was looking forward to a really good night sleep as I was officially on Summer Break! Sleep wasn't easy on me. I had a dream in which I had gone in to see my cardio and he was telling me that there was nothing else they could do for me and that I had to go on the Heart Transplant list. I remember just crying and crying and demanding to know why he didn't warn me of this possibility when I had gone in to see him at the end of April. I remember him telling me that the Cardiac CT results showed him that despite me being basically asymptomatic,I was in need of a new heart.

I remember throwing a model of the human heart at his head and crying for my mom. I just remember that feeling of complete terror. My worst nightmare had come true. I remember my mom hugging me and making demands of the cardio (I don't know what those demands were) I remember bits and pieces of the rest of the visit. I remember the drive home. We were both crying and my mom was insisting that this had to be a mistake.


....Then I woke up.

Mothers Day Reality

Most people think that Mothers Day is only sad for those who have suffered a loss such as a mother or grandmother or a child. No one ever thinks about how hard it is on someone who cannot have children.

I have always known that having children naturally would likely not be possible for me. When I was 19 and had the mechanical valve put in and was put on Coumadin,that was like the last nail in my coffin of motherhood dreams. Now there would be no possibility of carrying children.

I know people will say that I have options: Adoption,Surrogacy. I don't think I could ever ask anyone to be a surrogate for me. As for the adoption plan,I am so scared that I would not be accepted as a potential adoptive mother because of my CHD & various other health issues.

Yesterday after I had dinner with my family.I went to check my text messages. There were none. Then my mom said "Well Today's Mothers Day. You aren't a mom." I swear I nearly slapped her. I was so angry & upset with her and I know she didn't mean anything mean by it. She's an amazing mom and I am lucky to have her.

Hearing about and seeing all these flowers & homemade cards that kids brought their mother made me sad. I realized right then that I will likely never get to share a Mothers Day with my child.

This year was the first year that Mothers Day had affected me like this. I was surprised by all the emotions I felt yesterday. Maybe it's because I am getting older,and watching my half siblings & high school friends start families.

I just don't know...

CT Day

A big thank you to my family for their support before and after the procedure.


I got to the hospital before 9am and by the time it was 9:30am, I was taken back to the scanner. Then the apprehension came in because they were ready to put in an IV. Thank God I had 2 really good nurses & a really attractive male radiologist. All three of them decided together which vein would be the easiest to try and get an IV going. And I was only stuck once! Got the IV on the first try and it flushed perfectly. 


Then they couldn't get the heart rate to slow down enough (they want it around 60 for the best pictures) So they gave me a half a dose of Metoprolol to slow it down and that still wasn't helping so one of the nurses gave me another half and we waited. Finally it worked and the radiologist injected the dye. Oh God I hate that feeling. I felt so ubearably hot for about 10 seconds and I had a metallic taste in my mouth. 5 minutes later the scan was done and I could sit up. 


Then the nurse took my blood pressure and it was garbage. It had dropped down so low because of the Metoprolol that I couldn't leave until it was stable again. It took an hour for it to stabilize and I was getting a saline bolus to stabilize it because the nurse suspected that I was dehydrated. I was sent home with a promise to check my BP every hour with my home monitor and to go to the ER if the BP dipped below 80. 

I got a Starbucks & LaBou after because I was starving and I had a headache and was super lightheaded. SO glad it's over though.

I am really looking forward to seeing & hearing about the results from Cardio.

Let's Roll

I was convinced it would take months to schedule the Cardiac CT.

So I wasn't really paying attention to my cell phone this morning. Of course I missed a call from my cardiologist's office. I immediately called back and I left a message with the woman who had called me (authorizations & new patient coordinator) She called back about 20 minutes later and informed me that insurance had approved the CT scan and she proceeded to tell me everything I needed to know.

The CT scan is set for May 11th which is this Friday.

I have to check in at 9:00am at the patient registration at the hospital.

NPO four hours before the procedure.

I have had a Cardiac CT before so I know what to expect. I hope that this will give my cardiologist and myself some answers.

Very Greatful

After a lengthy discussion with a wonderful woman I have decided that I only need positivity in my life. No negativity. This journey is one that I thought would never hit another speed bump.Over the past five days I have come to realize that this is only the beginning.I've had more scary words & phrases tossed around in the past four days than in the past 4 years.

Yes it is scary. Yes I hate the idea of not knowing,but will I dwell on it? No,I will do my very best not to. Dwelling on it causes more stress and my body hates stress. Patience has never been my strongest strength but seeing as we won't know anything more until that CT is done. Then I can have another freak out.

No one wants to hear the words Heart Failure but the good thing is that my new adult cardiologist is staying on top of it. He's running the tests to see if in fact I am in heart failure and if I am how severe it is.Right now the only symptom I am having is fatigue.

Today the results from my bloodwork came in the mail and I was relieved to see that overall they looked good. I was mostly concerned about my liver & kidney numbers but those came back within normal range. The only number that was off was my BNP. This is apparently one of the tests done to detect heart failure. The BNP was elevated,but not extremely high which suggests to me that if I am in heart failure,I am in the very early stages of it.

So I am going to try not to worry until the CT is done and the results are in.

Thank you to everyone who has offered to listen to me vent,offered to bring me cookies and offered to come down to see me.

For right now life is on pause...

Echo Results

Well  it looks like I'm headed for left sided heart failure. Why the hell did cardio not mention this on Monday? Oh and I have another Aortic Aneurysm.


I got all this news from the echo report that they sent me today. Technically it said Indication: Left sided Heart Failure but really who pays attention to stuff after reading that? 

There were a few more things indicated in the report but nothing as major.

I had an Aortic Aneurysm repaired when I was 19 but now it seems I have another one. It is 3.2cm. So not terribly huge but still concerning. The plan now is to get insurance to approve the CT and then get it scheduled and have it done. After that we'll have some sort of plan.... I hope

Maybe the CT will show that the Ejection Fraction isn't under 50. Maybe it will show that left sided heart failure is not a possibility.

I just want to see the results...

Waiting

Just a quick update...


I had no idea how nerve-wracking waiting could be. When I was having issues before I was 19 and my mom was still shouldering most of the information and details about my care. I don't remember the waiting for the scans or the cath or the surgery being as anxiety-provoking. 

All I know is that Cardio is anticipating a fight with insurance to get the Cardiac CT approved. This particular CT is not really a diagnostic tool in my case but hopefully Cardio can spin it so that it is approved by insurance.

Waiting for that is so anxiety-provoking. I just want to have a date set for the scan so we can have the scan done and get answers as to what is going on and see if I need to be on meds for the decreased left ventricular function. My guess is that since I am not symptomatic,that I will not be put on meds and we'll just keep a close eye on it.

Oh and if ONE more person asks if I need a transplant,I may lose it. I am already scared and the idea of a transplant scares me to death. Sheree,Ashlea & Katie A, I am not talking about you guys. 

Right now I just need prayers,positive vibes,hugs and love from everyone. I am going to need you all as I embark on this unchartered territory.

Tomorrow I should receive a copy of my echo results so after I make sense of those I'll probably write a blog post about them as well.

Heart hugs and much love to all of my faithful readers.

Not what I expected...

Today did not go how I expected it to go at all. I had mild anxiety over the cardiology appointment that was scheduled for today but I was SO used to hearing "You look good.See you in six months" Words that my pediatric cardiologist uttered every six months. Even so I brought a notebook full of questions to ask my cardiologist. Only 2 of them got asked because we spent most of our time going over exactly what the echo showed him.

The first thing he said was that he saw nothing catastrophic. I was glad to hear that but then my mind shifted to "Oh shit he did see some changes!" Then he went on to explain that my left ventricular function has decreased and it's now at 45-48% I have never had good left ventricular function so the fact that it has decreased scares me. I have a call into him to ask what the last percentage was so I can compare the two. He also said that I have right ventricular hypertrophy because the right ventricle is having to overcompensate for the decreased left ventricular function. He also told me that I have a residual VSD that is restrictive. He assured me that was a good thing.

He wants to do a Cardiac CT scan so that he can check on the conduit more fully and also give me a definitive answer on why my blood pressure is so different in each arm (My theory is that the BT shunt is the reason behind that) Right now it's just a lot of guesswork. The good thing is that if necessary I can be put on meds for the Left Ventricle. He does not believe that the tiredness I have been experiencing is cardiac related but we'll know for certain after the Cardiac CT.

I'm scared to death right now. I know a CT scan ISN'T a big deal but I guess I just got complacent and I believed that I was done having issues. Stupid I know. I've been pretty much in shock most of the day and now I am desperately trying to stay calm even though I just want to cry.

Today sucked and it needs to be over :'(

Life Lessons

So yesterday I got a message from someone who at one point I considered to be one of my best friends. About 11 months ago we had a major falling out and we didn't speak for a LONG time. So you can understand my surprise when she messaged me. Honestly I had to sleep on it. I wasn't sure if I was going to respond at all. In the months after our falling out I was so angry at her. Angry that she had caused me to question the reasons that I was in the heart community.

So last night I prayed on it because my head and heart were at war with one another. God pushed me in a direction that I was terrified to go in.

I messaged her this morning and throughout the day we have been exchanging messages. In the last 30 minutes I have sent her a friend request and she has accepted. We both realize and accept that it will take awhile to get our friendship back to what it once was but we are both willing to take the time to fix it.

Sometimes second chances aren't earned but when they are earned,you owe it to yourself and to the ones you've been wronged by to give it a shot.

What I have learned in the last 24 hours

Liam is one lucky little baby. He has a mom that fought for her child from the beginning. He has a mom who demanded that the pulse ox test be done and she refused to leave the hospital until the test was done.

Thank God for her determination. She likely saved her baby boy's life.

Yesterday I got word that Liam had been transferred. I was getting conflicting reports so it was about an hour before I was able to verify that yes he had been transferred for two reasons. 1, the small rual hospital he was born at did not feel comfortable in treating his complex case. 2. His mother wanted him at a children's hospital.

They remained in the same state,thankfully and his mother was able to ride with him in the ambulance to the hospital. When they got to the new hospital he was assessed by a pediatric cardiologist who deemed it necessary for him to have his Norwood this morning.

Surgery started shortly after 9am and by 1:30pm Eastern time, Mama was being escorted to the PICU to see Liam. Surgery had gone very well and Liam was doing well. The surgeon was very pleased with how it had gone.

I know many people have asked where he had his surgery/where he is right now,but Mama has not given me that information yet. Her friend says that she is very private.Especially when something serious is going on. So please continue to pray for this sweet baby boy and his Mama.

Pulse Ox does save lives

Today was a very humbling day.

Early this afternoon I spoke with a friend and found out that someone we both knew had recently had a baby. Baby Liam was born 2 days ago. He was a healthy size and he was pronounced healthy by the doctors. They were going to be discharged tonight. Then the friend of the new mom told the new mom about the pulse ox test and urged her to have it done before Liam was discharged.

The new mom spoke to her nurse about it and the nurse said that Liam was healthy and he didn't need it, But Mama persisted and spoke to the doctor. The doctor echoed the nurses' statement. Finally after a lot of reluctance from the doctors and nurses,Liam was given the test.

Imagine the surprise when the 02 reading was 83. Liam was immediately taken from Mama's arms. Cardiology was called and after the pediatric cardiologist on call listened to Liam and preformed an echo,it was determined that Liam had HLHS or Hypoplastic Left Heart Syndrome.

He will be facing his first of at least 3 surgeries with the first one,the Noorwood, scheduled for Monday.

Without gaining the knowledge from a dear friend of mine, I wouldn't have known to share this information and Liam might have passed and Mama may have had to learn the diagnosis from the coroner.

Thank you Kristine for all you've taught me and all you and Cora continue to teach me.

Cora and I probably saved a life today.

Ashlynne's Story

I had a completely normal pregnancy with Ashlynne.  I found out at 4 weeks and 1 day that I was pregnant, so we had lots of time for ultrasounds!  I believe that I had 6-8 of them and was told that everything was perfect and that we were expecting a wonderful, healthy baby girl. 

 I had a scheduled c-section because my first daughter was born by c-section.  Ashlynne Marie Morey was born on June 29, 2011 at 8:04am weighing 8lbs 3ozs and 19 3/4inches long.  She was absolutely perfect!  When the nurses took her to the nursery for her stats to be done 3 times a day, I hated it because I didnt want my newest lady to be away from me for even a minute!  She passed her hearing test and her other little tests that they do with ease.  Since she was a csection, they make mommy and baby stay in the hospital for 3 days. 


On our second night in the hospital, Ashlynne went to the nursery to get her weight done, a bath, and for them to listen to her heart.  They brought her back and said that everything was great.  The next morning, her pediatrician came into my room and told me that a nurse that was working on the overnight shift thought that she heard a small murmur in Ashlynnes heart.  Then she proceeded to tell me that on a scale of 1-5, with 5 being the worst case, Ashlynne was less than a 1.  After our little chat about murmurs, Dr. Kane told me that they were gonna release us that day (July 1st) and that since it was 4th of July weekend, they were gonna send us an hour away to go to see a pediatric cardiologist, just to ease our minds over the holiday.  

They made us an appointment to be seen at 11:30am and we weren't released until around 11.  They said "Dont worry if your late, they will still see Ashlynne" and that is when we started getting really nervous.  Upon our arrival at the peds cardiologist, they called us back almost immediately.  When the doctor came in and listened to her heart, he thought that she may have stenosis in a valve, and that it would probably end up just fine. 

Then they sent Ashlynne to get an EKG and then an Echocardiogram.  We waited eagerly for the doctor to return to the room with the results.  What happened next was unbelievable.  My fiance and I were told  that our 2 day old baby has a condition called a Complete AV Canal defect and would require open heart surgery before she turned 5 months old.  What happened after that, im not quite sure, I was so unbelievably shocked and stunned that I didnt hear much of anything.  Ashlynne would now go to the pediatrician multiple times a week to be checked and to the cardiologist at LEAST twice a month.  It seemed like we lived there. 

At three weeks old, Ashlynnes dad and I noticed that her breathing had started to change and that she seemed to be going a million miles an hour with her little lungs.  The doctor then put her on Lasix, a water pill type of a medicine, to help with Ashlynnes breathing.  She continued to see the doctor every 1-1 1/2 weeks for weight checks and to just listen to her.  Everytime we went to the doctor, there was an intern or a nurse or another doctor that listened to Ashlynnes heart, because not many of them had heard a baby with this condition.  It felt like she was a circus attraction at times. 

Ashlynne continued slowly gaining weight and growing, but in NO way was she growing like normal babies.  Around 3 months old, we were finally able to get Ashlynnes records sent over to the Childrens Hospital of Philadelphia (CHOP), and got to meet a wonderful peds cardiologist, Jodi Chen.  Dr Chen saw Ashlynne and they did an EKG and another Echocardiogram and with the results, they scheduled Ashlynne to have surgery. 

 It seems like everything went so fast after that point.  Ashlynne had surgery to correct her CAVC on October 28, 2011 with Dr. Stephanie Fuller.  I dont think that I have ever been so terrified of anything in my entire life as I was that day.  After handing off Ashlynne to the anesthesiologist around 8am, we were sent up to meet and talk to Dr Fuller, who would explain to us the entire procedure.  She was a very nice woman, very calm and confident. 

 After talking to her for about 15 minutes, she went to start the procedure.  My fiance and myself were to stick around the hospitals "bridge" or around the Ronald McDonald rooms that were set up for the parents in the hospital so that we could get our hourly updates on Ashlynne.  Jess, our nurse, was amazing.  She came and found us less than an hour later to let us know that Ashlynne was just put on bypass and they were gonna start the repair.  My nerves at this point were absolutely shot.  About 45 minutes later, they were DONE!!!! They were going to do an echo in the OR and then sew her up! 

Thank God that our baby was fixed!!!  We then sat in a room for what seemed like forever, waiting on Dr Fuller to come talk to us again to let us know how everything went.  She finally came in and said that everything went well and Ashlynne was in the CICU (Cardiac Intensive Care Unit) and being cleaned up and set up for us to see her. 

  

About an hour after that we finally got to see her.  Our little trooper was sleeping so peacefully.  She looked great, consitering what she had just been through.  She was gonna be sleeping for much of her time in the CICU, so that she could heal.  I wasnt allowed to hold her until the night of the 31st, because she went into JET, so her heart rate was funky so they kept some wires in her that they normally would have taken out.  Those 4 days were the hardest 4 days of my life.  Watching her lay there and not being able to scoop her up and love on her. 

Ashlynne went into the CCU (Cardiac Care Unit) on November 1st which was 4 days after surgery.  She was awesome.  She finally got to take a bath.  And we were given a little box so that we could walk around the floor, instead of her laying in bed.  It was the best!  And finally, the next day, we were able to go home!  Only 5 days after having open heart surgery!!!!  What a trooper our Ashlynne has been! 

About a month after surgery, Ashlynne was allowed to stop taking her lasix and has been medicine free for over 3 months now!  She has a residual VSD, which means one of her patches on her heart has a little leakage around it.  In the future Ashlynne may require another surgery to correct this, but as of now, she is doing great! 

The cardiologist has cleared her for no visits for 6 months to a cardiologist!!! This is amazing since we pretty much lived at doctors offices for the first 4 months of her little life.  Ashlynne is now 7 months old, and doing amazing.  She just got her first tooth a few weeks ago, and shes sitting up like a trooper and trying to get around.  I have never seen such an amazing baby in my entire life, and I thank god that her story has ended up a happy one.

Here is a link to the video story that her Mama made.

http://www.youtube.com/watch?v=TO2HQt2xOH4&context=C3e7772eADOEgsToPDskI6XF0K_49WK7mFcY0qvhsR

Bayden's Story

 It was March 13, 2009. Aaron took me to my weekly OB/GYN visit. My baby boy (who has no name) is due to make his appearance on March 20, 2009. We decided after my appointment, we were going to eat lunch at Checkers a.k.a. Rally’s. After we checked in, I started reading a parenting magazine. They called my name and we went back. The first thing they do is weight. I was at 173lbs. Not too bad considering I couldn’t gain any weight for the first 6 months. Next, they took my blood pressure. The numbers were sky rocketed. If I recall correctly, it was 185/111. She took it again. The numbers were still in the same area. We went ahead with my appointment, checked the baby’s heartbeat. They took my blood pressure one more time. The numbers were way too high. The nurse said, “I’m going to wheel you over to labor and delivery. Dad can drive around and meet you there.” What?? I can’t leave? No Checkers? Aaron came in the room where I was hooked up to a pulse ox, fetal monitor, and blood pressure cuff. I think we were there about an hour when the nurse came back. My blood pressure was not changing and it the doctor was worried about the baby. “How do you feel like having a baby?” she asked. Emotions flooded my body. Fear, anxiety, worry, excitement, fear, and more fear.

Fast forward 17 hours. March 14, 2009 at 10:37am, my perfect little boy, 6.5lbs and 20.5 in long, entered this world. He had all 10 fingers, 10 toes, two eyes, a nose, and a mouth. We named him Bayden Michael. He was absolutely perfect; the most beautiful thing I have ever seen in my whole entire life.

March 16, 2009: Time for us to take our little bundle home! Dr. Brenner made one more round before we were able to be discharged. She took out her stethoscope and listened to his heart. “I hear a murmur. I’m going to order an echocardiogram to make sure everything is okay.” Tears started falling immediately. Aaron kept telling me it was going to be okay. His best friend’s little boy had a murmur and it closed on its own. Nope, didn’t work for me. I couldn’t stop crying. They took Bayden to the nursery to do his echo. Of course, Mommy and Daddy were going too. We weren’t able to go into the nursery because of the other babies that were in there. We just stood at the window and watched. It took a little over an hour to complete his echo. After they were done, we took Bayden back to our room to sit and wait. They sent his echo to a cardiologist named Dr. Humes at Children’s Hospital of Michigan. A resident doctor came into our room about an hour later and said he’s taking us down to the NICU to talk to Dr. Humes over a webcam/satellite phone. My heart stopped. I knew the second he said we were going to talk to a cardiologist something was wrong. We dropped off Bayden at the nursery and walked to the NICU. He set us up in our own little area and closed the curtain. Dr. Humes introduced himself and what he does. He then said, “Bayden has a congenital heart defect.” Words that I will remember for the rest of my life. The resident that brought us down there handed us some papers with some foreign words on the top. “Tetralogy of Fallot”? How do you even pronounce that? My first question was, “Do you have to do open heart surgery?” When he said yes, I broke down. I don’t remember much of the conversation after that. I remember him describing the defect, the fatality rate, and open heart surgery.

After we were done, we went back to the nursery. I went to get Bayden while Aaron ran to his mom (who happened to show up at just the right time). I don’t even know how the nurse understood what I was saying. It was supposed to come out, “Can I have my baby please?” but came out more like, “blbualkjos”. She already knew. She wheeled Bayden to me and walked with her arm around me in the hallway. I was hysterical and couldn’t control my crying…which caused her to cry. I called my Mom and Dad and they came up to the hospital. A little while later, we were finally discharged to go home. This day began our heart journey, which will last for the rest of Bayden’s life.

A few days after I had Bayden, I had a follow up appointment with my OB/GYN for post-partum and my high blood pressure. Of course, I took Bayden to show off. After we got there, I told the nurse about Bayden’s congenital heart defect. She said, “They didn’t see it on the ultrasound?” No, they sure didn’t. I had to go back the next week for a blood pressure check-up and more labs to be drawn. When we showed up for that appointment, the doctor told me that he ordered my ultrasounds to be pulled. It took 4 different radiologists to go over my ultrasound. Not one of them could find Bayden’s defect anywhere.

That same week was Bayden’s very first cardiologist appointment. We met Dr. Humes at St .Joes in Ann Arbor. It was basically just a new patient visit. I brought my mom with Aaron and me to be a 3rd set of ears. I didn’t want to miss anything about Bayden’s heart defect. Dr. Humes gave us a book by the American Heart Association. It explains heart defects and preparing for surgery. He also explained to us what we needed to watch for: turning blue around the mouth and nail beds, tiring easily, no appetite, and rapid breathing. We were also told that they were going to try and wait until 6 months to do surgery. Bayden was still a tiny little guy and unless its life threatening, they would rather wait until there is more weight put on.

Bayden was sleeping in his basinet right next to my side of the bed. It’s crazy how many times an exhausted new mom will wake up a night just to make sure their baby is breathing. If I couldn’t feel his stomach moving up and down, I would put my finger under his nose. If I didn’t feel anything, I would move him. Then I would get an irritated squeak. That’s what I was looking for! This went on quite a few times during the night and also during his nap times.

In June 2009, We took Bayden for his cardiologist appointment down at Children's. That was our first time being there. Usually we see Dr. Ross/Dr. Humes at St. Joes. After Bayden was called in, we got his weight; still 10lbs. and his height; 24.5 in. Jodi came and did another Echo. Everything pretty much looks the same. He will have to have open heart surgery. We were hoping the hole would get a little smaller, but because of the size and location of the hole, and his Aorta is a little off, they will have to open him up.

Dr. Ross came to see him after. Bayden's breathing was a little fast for him, but he had been taking his Lasix every day. Dr. Ross would be meeting with Dr. Walters and Dr. Delius the following week. He was going to take them Baydens case for them to review. That is when they would decide if we were doing his surgery within the next month or if we were going to try and wait it out. Dr. Ross said he would call me the following Tuesday and let me know. After a very long week of waiting, Dr. Ross called us at 9:45 Wednesday morning. He met with Dr. Walters the previous Monday and showed him Bayden's case. Dr. Walters decided it was time. I called and made our appointment to meet with him and go over preparations. I knew this day was coming and I've been waiting for it. Meeting with the surgeon makes everything so real. “It's really going to happen now. I really don't want to do this, but who really does. But it's better to do it now and just get it done and over with.”

We went to see Dr. Walters at 3:30 on July 9th. This was our first time meeting him. I've heard nothing but excellent things about him. He explained what he saw in Bayden's echo. Bayden does have Tetralogy of Fallot, but a very mild case called "Pink Tetralogy of Fallot". His aorta is only a tiny bit off, which is no concern. The pulmonary valve is the perfect size and he is pretty sure there is no muscle build-up. So, the only thing that he has is the whole. He said he won't know for sure until he opens him up. In the echo, he could see where the wall started to form on both sides, but never finished. He explained that it will be complete open heart surgery. He will make an incision from the top of his ribs to the bottom. They have to crack his ribs open to get to the heart. At this time, Bayden will be put on bypass. After everything is “fixed” they will close his ribs, sew him up, and take him off bypass. Well, it sounded simple enough…for him. I was a wreck! He then chose a date. August 6th. It was less than a month away! Really!?! Panic set in.

August 5th, we went to Children’s to have his pre-surgical testing done. My poor baby was poked so many times. There were lots of needles, blood, x-rays, echo’s, electro…6 hours of testing. It was a very long and exhausting day. Tomorrow, August 6th is the day: The day my baby was scheduled to have open heart surgery.

I haven’t really talked about my feelings during Bayden’s surgery. Besides the tears, I didn’t let anyone know the thoughts or emotions I was feeling. I had to stay strong. I couldn’t stress anyone out even though I thought my head was going to explode. Here is the day of Bayden’s surgery:

The night of August 5, 2009, I was trying to get last minute packing done, spend time with the baby, make sure the puppies would be taken care of…it was stressful. At 9:30 pm, the phone rang. The caller I.D. said DMC. Panic set in. I answered the phone and it was Dr. Walters, Bayden’s surgeon. Dr. Walters just received a heart for a transplant patient and had to do emergency open heart surgery. He was cancelling our surgery for the next day. I was a little aggravated at the fact that it was cancelled, but happy that another child was receiving their new heart. The next day, August 6th, I received a call from Dr. Walters office. Bayden’s surgery was scheduled for Friday, August 7th at 10:00am. The only thing I could think of at the moment was “Oh God.” It was really seriously truly happening now. My son was having open heart surgery and we had to be there at 9am.

The morning of his surgery, we woke up around 7:00. Aaron loaded up the Jeep with our suitcases and all the extra stuff we’d need while we were at Children’s. I was in the living room with my mom taking pictures of my little man. I had to get one more picture of his beautiful chest. Then it was time to leave. It’s a 30-45 minute drive to Children’s from our house. The whole way there, I thought I might throw up. Thoughts kept racing through my head and I couldn’t control them. The closer we got to the hospital, the more nervous and anxious I got.

We pulled into the parking garage and started walking in the hospital. We took the elevators to the 2nd floor. I checked Bayden in when we got to the surgical family waiting room. My cousin Billy took us into the hallway where we said a prayer for Bayden. Then the nurse called Bayden’s name. Aaron and I took Bayden to be prepped. We dressed him in his hospital gown and waited. The nurse came in and said our surgery was pushed back a little. Dr. Walters had another heart emergency. By this time, lots of family showed up to the hospital. They we’re able to come in and out of Bayden’s room to see him. He started getting a little cranky because he hasn’t eaten anything in 7 hours. Around 12:30 or 1:00 (I can’t remember the exact time. Everything was blending together by then), the nurses came in the room. One told us after he was sedated and all the lines were put it, she would come let us know. It would take about 1 ½ hours. It was time. I have never in my life experienced as many emotions at one time as I did at that moment. We passed Bayden around so everyone could give him a kiss. Then I had to hand him over. I watched the nurses walk away with my little boy. The tears started flowing and it took a while for them to slow down. Now, we waited and waited and waited.

1 ½ hours turned to 3 ½ hours. Still, no word on my baby. I was already anxious and full of panic, but not hearing anything about Bayden just jumped up the anxiety. Why hasn’t anyone came out to tell us anything? Floor 2 was now vacant. No more surgeries and everyone, except another heart family, were around. I went into the room where Bayden was prepped. Nobody. Finally, I found two residence and asked them to please find me someone to give me information. About 30 minutes later, Dr. Walters rand out and pulled me and Aaron into the family counseling room. He apologized for the wait. He had another emergency with another heart baby. Relief was the only thing I could feel at the moment. After he told us about why he was late, I couldn’t be mad at him. I was more cranky at the fact that not 1 nurse could come out and tell me what the hell was going on. A little while later, the nurse came out (FINALLY) and said, “Bayden is now on bypass. We will be making the incision soon.” Aggravation kicked in. Everything at that moment started to annoy me. I love my family very much and I am thankful everyone was there, but all the voices started sounding like nails on a chalk board. I think I was okay, but I may have had an attitude. Trying to hide my fear of my son dying was taking a toll on my head. All I wanted to do was scream on the top of my lungs and yell at someone. I felt like I couldn’t breathe and wanted to just run away. My son’s life was out of my hands. A mother is supposed to protect her child no matter what. How could I protect him from open heart surgery? Easy. Just say Nope, not having it done. Then what good would that have done? It would have slowly killed my child. There was no choice in the matter. The only thing I could do is pray and beg God to be next to Dr. Walters as he worked on fixing my baby’s heart. I swear, time was not on my side. Every time I looked at the clock, only 5 minutes have passed. I needed to walk. I needed to be by myself. I started walking the 2nd floor halls. All the hallways are decorated with children’s drawings. I walked up and down looking at every last picture that were on the walls. After looking at all the pictures, I walked back. Another nurse gave us pillows and blankets so we could lay on the couches while we waited. I laid down and closed my eyes. There was no way I was going to sleep. It just felt so good to close my eyes. They were so heavy and I was beyond exhausted. I had to get up again. I started walking around. The T.V. was not keeping my attention. If I have the time correct, around 10:30, we were told Bayden was being sewn up and they would be taken off bypass soon. 30 minutes later, Dr. Walters came out to talk to us. He said Bayden did very well. He did have “Pink” Tetralogy of Fallot, but while he was in there, he also found an Atrial Septal Defect, Subaortic stenosis, and his PDA didn’t close so they put in a PDA clip. He also took care of all three of those things for us. Bayden also had a “mystery” vein coming off of his heart. In all his years doing pediatric heart surgery, he has never seen it. Basically, it was a vein coming out of his heart that didn’t attach to anything. It just closed itself off and stopped its blood flow. He just left it there for fear of what would happen if he removed it.  He said they would be bringing Bayden around to the elevators to take him up to 4th floor PICU. We could see him then. I stood in the hall by those doors. It seemed like an eternity. Finally, a nurse came out and said “You can see him now.” Everyone charged through the doors, Mommy leading the way. The second they pushed Bayden in front of us I couldn’t breathe. There are no words to describe what my poor little guy looked like. After we took a few pictures and gave kisses, we walked back out. We got all our stuff together and went up to the 4th floor to wait. It was midnight. We’ve been at the hospital for 15 hours now. Besides the 5 minutes of seeing him after surgery, I haven’t been with my baby for 11 hours. It was time to go see Bayden. When we walked into his PICU room, there were machines and wires and monitors. This was the first time I was able to see his incision. He had tubes coming out of him, wires all over, breathing tube in his nose to his stomach; he was completely covered. It killed me. I could not hold my baby. I could only touch him and kiss him. Seeing him lying there so helpless broke my heart into pieces. We had to do this though. He has a happy “fixed” heart now.

It is one year later. It seems like I can remember every detail about that day, but at the same time it’s such a blur. He is almost 17 months. He is a happy, healthy, growing boy who is getting into everything imaginable. He is curious about everything and loves to “Vroom Vroom” with his cars and planes. He loves baseball, playing catch, and kitty cats. My family and I have been truly blessed with Bayden. I’ve never had so much faith, hope, compassion, love, anxiety, or stress in my life as I had then. I wouldn’t trade my Heart Baby for anything. He has taught me what strength and fighting really is.

Jacob's Story

November 18, 2009 was a day that I will never forget. My husband and I went for our 20 week ultrasound expecting to hear if we were having another little boy or a baby girl. The joy of learning that we were having another baby boy was short lived. Right after the ultrasound tech got extremely quiet and we knew something was not right. She told us that there was something wrong with the heart. We were devastated and so afraid for our son. The next day we went for a heart echo and his diagnosis was confirmed, our son was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where the left side of the heart is underdeveloped of not there at all. Jacob’s was small and completely closed off. He also had a restricted atrial septum. This is the only outlet blood had to move through his heart and children with that added defect have an even lower chance at survival. We wanted him to have the best chance possible so we decided to travel 9 hours to have him at The Children’s Hospital of Philadelphia.

Jacob was born on March 23, 2010. Within hours of his birth that Septum became intact and they were losing him. He was rushed in for an immediate heart catheterization to open it up. His xray showed his lungs were flooded and the doctors were afraid he would not make it.

Jacob did make it. 9 days and 2 bacterial infections later on April 1^st 2010 he was stable enough for his first open heart surgery (Stage1: Norwood). This was also the day we were able to hold our baby for the first time. Kissing him good-bye and watching them wheel him to the OR was the hardest thing I have ever done. I told him to be strong and that I loved him. Jacob did very well during his surgery and was off the ventilator 5 days later.

Jacob continued to improve however he had very labored breathing. He couldn’t drink much by bottle because it was too risky and to tiring for him.

He had a g-tube and Nissen surgery done on April 20^th. After a dose of Morphine I watched Jacob’s numbers on the monitor suddenly drop. The nurse ran in and started patting him and telling him to wake up. They continued to drop and I could do nothing but stand there and watch and pray. The resident ran in and put Oxygen by his face and they hit the alarm; a sound I never want to hear again in my life. The alarm meant they need the crash cart, it’s bad. As a parent every time you hear that alarm you are frozen with fear. About 50 doctors ran in, the room flooded so fast. Thankfully the oxygen brought him back and no further intervention was needed.

His body had stopped breathing because the morphine was too much for him. I will never forget the fear I had that moment, thinking I lost him. It is not a feeling I would wish on any parent. It took a few days for the drug haze to wear off but he recovered from his surgeries and we were finally released to come home after 8 weeks in the hospital.

At 4 months old we went back to CHOP for Jacob’s second open heart surgery (Stage 2: bi-directional Glenn). They thought his septum had grown back and went in to clear some more and a hole was punctured in the back of his heart. This is common when going back to get the septum. Thankfully he has an amazing Surgeon and he was able to (with difficulty) close up the hole and stop the bleeding. Jacob recovered amazingly well and we were home just 6 days later.

You would never have guessed he had just had open heart surgery. Jacob came home on Oxygen because his oxygen would drop whenever we tried to wean him at the hospital. He was on it for a month and then once fully recovered was able to keep his numbers where they should be.

 Jacob started drinking by mouth and within a few months he no longer needed to eat by his g-tube. This kid has a HUGE appetite; he made up for lost time lol. When he turned a year old we had some more testing done because of his “unique” breathing. We learned that both of his vocal cords were paralyzed. Scar tissue had built up around the vocal cords tethering them together. His airway is the size of a pinhole. It is amazing he could even breathe without assistance. Only 5% of kids with the airway can breathe without a Tracheotomy tube and he not only has half of an airway but also has half of a heart!

Even though Jacob has continued to be able to keep his oxygen at a good level for his heart his breathing is dangerous for him. He is exerting too much effort just to breathe and as he gets older it will become more difficult. Doctors in the top two airway hospitals both agree that he needs a airway reconstruction surgery. He is scheduled to have it on April 25, 2012. They are going to first try to go through his mouth to cut the tissue and see if that works. If it doesn’t then they will have to go through his throat and use his rib to create a graft which will hold the airway open. We are so scared about this surgery. I guess because he is so happy and doing so well at home. I knew about the heart stuff, I was prepared for it. I knew that he needed that to live. I was not prepared for this. Jacob will also need at least one more open heart surgery (Stage 3: The Fontan) which he will have when he is 3 or 4 years old. It kind of depends on what happens with this airway surgery.

Jacob doesn’t speak much because it takes so much effort to breathe. He makes sounds and says 2 or 3 words. He is learning to use American Sign Language which has opened up a whole new world for us. I am so proud of him and amazed that he has found a way to communicate with us. It was so hard seeing him get so frustrated with not being able to communicate.

When we learned about Jacob’s heart condition we were devastated. I never could have imagined that my life would have gone down this path. I hate that Jacob has gone through all that he has but I am blessed that he came into our lives. Jacob has taught me so much about the true meaning of life. He has taught me to slow down and cherish even the smallest moments. I won’t lie I still have days where I want to pull my hair out, I am a mom after all. The point is that even in those moments I realize how lucky I am to have those moments.

This life is scary; a little cold makes me worry that it could take him from me. This life is also beautiful; watching him smile and play like any other child. His smile is brighter than anything I have ever seen. I have formed relationships I never would have known had it not been for Jacob. I refuse to spend my life fearing Jacob’s death, Instead I spend it focusing on the beautiful life that we were given. Jacob may need a transplant one day, but the way I look at it is 30 years ago his diagnosis was 100% fatal. Today some centers have a 92% success rate. Who knows what they will come up with in another 30 years. Where there is life, there is always HOPE!

Heart Hugs,
The Baker Family



Emma's Story

Today I chose to profile a heart child who is celebrating her birthday today. Sad thing is,she is celebrating it in heaven. That is reality for so many heart parents and it is heartbreaking.

Emma is my 3rd baby. My boys before her were normal and healthy but from the second I was was pregnant with her I knew I felt funny. I figured I was pregnant with a girl. Yay for me I was, my first princess.

At 14 weeks we were sent to a specialist because her right kidney was enlarged, while going for ultrasounds every few weeks it continued downhill. At 18 weeks they said she had a heart problem but were not quite sure what it was. At 21 weeks they said they could no longer see the problem in her heart but I'd continue with the ultrasounds because of her kidney. I knew that they were wrong. Everyday I argued back and forth with myself over her heart. I even had them print ultrasound pictures of her heartbeat out instead of normal baby pictures. They thought I was crazy. I should have pressed harder to get answers and have the doctors dig a little deeper. I learned through my pregnancy with her that I should always trust my gut. She was delivered via c-section 5 weeks early after an ultrasound the previous day when they brought up again that she has a heart problem. I was told it had something to do with her aorta. I had an amnio the morning of her delivery and waited for the results. I prayed her lungs were mature enough for delivery. One week in the NICU and she came home with extensive follow up with all types of specialities. Mainly cardiology.

At 2 months old we were prepped for the worst... She had 4 different heart problems. Hypertrophic Cardiomyopathy, Endocardiac Cushion Defect, Pulmonary Valvular Stenosis and Sub-Aortic Stenosis. The kidney was put on the back burner because it was functioning fine.

At seven months old Emma was finally put on the transplant list for a new heart, after me yelling and screaming at the hospital that she was going to die and they wouldn't do anything. I think stress got the best of me. 17 days after being placed on the list she received her new heart. 10-7-09!!! YAY! She was just under 8 pounds at the time. It was the scariest time of my life. My fear was not for Emma but for her siblings. I always treated them like adults throughout her journey because I knew if I sugar coated how bad it could get then they wouldn't be emotionally stable if she ever died.

 

We then spent 3 months in the hospital because the heart was just a bit to big for her chest. She eventually was placed with a trach because she developed tracheobronchomalacia as well as left main bronchus compression and I had to go through all types of training on CPR, meds and overall care for a bed bound baby! She had an NG tube for the remainder of her life. Her brothers (ages 6 and 4) even learned all about her vent maintenance and helped with the daily up-keep of it! They were so brave for her.

 

She started to grow at the time of her death she was just over 15 pounds.

To her death: The night before she went into cardiac arrest she start throwing fits, which she had never done. For example, she would kick her legs up, slam the down... arch her bach. The next morning we had a doctors appointment but before that time even came I had called my transplant nurse because of her change in attitude. She said she'd take a look at Emma when we came to the hospital in a few hours. Emma's heartrate was normal and her pulse ox was 96. I started to get Emma ready... changing her clothes, trach ties, etc. Well Emma started throwing a fit, followed by the worlds largest poopy diaper. Seconds after I changed her diaper she passed out. Turned blue and stopped breathing. CPR followed with 911. EMS worked on her for 35 minutes while taking her to the closest hospital. Once stabalized she was transported to Children's Hospital in Detroit. Days later after EEGs and MRIs we were told that lack of O2 lead to complete brain stem damage. We really had one choice and that was to remove her from life support.

I have found great peace in knowing that I was the last thing that Emma ever saw! My touch was the last thing she ever felt before she slipped away! It was me! I never left her side!

That all started on Feb 4th. She was turning 1 on Feb 12. Her father and I decided to wait for her birthday so all the other kids (13,11,6,4) could see that she made it to her first birthday! 3 days later we removed her from life support. It took just over 45 minutes for her heart to stop but it was very peaceful! I held her the whole time. We even tried to donate her organs back but again lack of O2 during her passing made it impossible. But we found out after her death that the "swelling" of her right kidney was because it was 2 kidneys fused together both fully functioning. Which was so cool to me!

 

 

 

Emma has taught me so much about the true meaning of love! I have many rough days but overall I have found that if it weren't for her life and death then my family would still just be existing in the world today! Now we try to make a difference and stay positive! I am forever in debt of my daughter Emma!