Love Your Love Notes

From the bottom of my heart, I want to thank all you that have taken the time to not only read some of my posts but to reply to them.  Your comments and kind words of encouragement, support and prayers mean so very much! I love reading your comments!  I also appreciate your emails, phone calls, texts, visits and just everything you do to show you care. 

It feels good to have our feelings acknowledged, know that someone is listening, thinking of us, cares for us and/or is praying on our behalf. And I think this is especially true when we are facing real hardships in our lives.  And that is why your comments mean so much.  Makes me feel good knowing someone out there cares about what happens to my baby.

I know I have some friends and family that come one here and read faithfully but have never commented and some have mentioend they are not sure how to do so. Therefore, below I posted a simple little instruction list on how to leave a comment or love note as I prefer to call them.

How to leave a comment:

At the end of my written post you will see a little link called Love Notes. 

1. Click on 'Love Notes'

2. Write your message in the box

3. Select a profile. There is a box under the comment box for that. If you don't have a profile, select Anonymous but include your name in the message box so I know it's you. =)  

4. Publish your comment.

5. It will then ask you to put in a code that will appear on your screen.

6. Your message will then appear on the screen.  And that's it!

If there are already messages from others simply scroll down to the end of those comments and you can begin to type in the message box provided to post a comment {love note}.


Thank you again for your loving support of Alexa, it truly warms our hearts! 

And thanks to my friend JM for allowing me to copy this idea from her blog for a comment tutorial of sorts!  =)

Meeting with Surgeon & Surgery Date

On Friday, {Jan. 22nd} we met with Alexa's surgeon. He is truly a wonderful man, full of smiles and compassion. Truly just seeing his friendly expression soothes some of my fears away. I was nervous the whole time waiting for him to call us back and kept feeling like I had to go pee. 

I hugged him a lot, maybe too many times, but I couldn't help it.  Feelings of love and appreciation just emanate from my heart for him and it's hard to control myself.  I am endebted to him for the great job he did with Alexa's first surgery and allowing us to get to know our sweet baby and allowing her to form a part of our family and now again he will hold her life in his hands even though it just feels unreal at times. I feel like I can and should just hug him forever.  But of course there was lots of to discuss so I had to let him go.

We talked about how well Alexa had been doing and about the cath findings. He explained that the extra muscular VSD's found present a little more of a problem but that he has a few ways he can go about finding and fixing them. For that he needs the cath doc to be in surgery with him though to help him with fluoroscopy if he cannot do the fix on his own the way he hopes. He also mentioned the importance of patching the main VSD in the left ventricle to the Aorta very carefully and with lots of smooth room so as to have no obstruction. I have read about LVOTO (left ventricular outflow track obstruction) and have read it is not good. The left ventricle is a very strong pump as it pumps blood out to the body, the way they patch the VSD almost creates something like a hallway before it gets to the door meaning the Aorta out to the body. This hallway if to narrow can create some obstruction to the blood flow which can lead to problems with the left ventricle, which equals bad news. I am very happy that he is aware of the importance of getting a big enough space there. He also talked about the conduit and what he might use, meaning a cadaver artery/vein with a valve or a contegra conduit, it all depends on what is available that day. He mentioned he would like to get in a 16-17 mm size conduit that he would hope it would last 5-10 years. I hope 10+. We talked about bypass, about hours in surgery mentioned hopefully getting in to the OR by 7 a.m. and being done close to 2:30 p.m. He said the risk of surgery has gone down slightly since she is older and stronger. Mentioned now a 95% success rate. But let me tell you that that 5% is enough to make your blood turn cold. I can honestly say though that we love him and that we trust him. We trust he will do his complete best and he knows what he needs to be aware of and take care of, which is everything. He mentioned Alexa also has one tiny collateral vein that he wants to clamp down and get rid of, and of course he will have to close off her BT Shunt. He said recovery time is about 7-10 days about. It is a big operation and completely rearranging the way her heart works and pumps blood, it will take some time for her heart to get use to the new flow.

As far as dates he mentioned Thursday Feb. 18th or more possibly Tuesday, February 23rd. He said he just needs to make sure about the anesthesiologist and that the cath doc agrees to travel down for the surgery. He mentioned he is going to be in and out of town for the next couple of weeks and doesn't want to do her surgery in between. He wants to do her surgery and be able to focus completely on her after care. Which is also what we want and another big reason why we like him. He likes to be very involved in follow-up care and we know he has a great intuition for things. So it reassures us knowing he will be there every step of the way. We also found out the hospital is a Magnet Status hospital and received an award as one the top ten hospitals in the nation, so this along with positive feedback from other parents make us more comfortable about the hospital in general. We are going to wait to hear back from him with a definite date but he pretty much told us to plan for Tuesday, February 23, which is as of right now is officially less than a month away.

My feelings are all wacked right now. Before starting this post, I had just finished myself a good cry and I even made my hubby cry with me.

We

love

Alexa

SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO

much

that

any

possibility

of

losing

her

is

very

devastating!

Of course we try to focus on the positive but honestly it feels like I must face death in the face and go past it and hand my baby over to a doctor that will cut her open and try to make things better for sometime, hopefully for a long time.

But really I want God to make her better for good and forever.

But for now, this must do, and I hope and pray, and I cry and I wish, and pout, and I scream, and a sigh, and I hurt, and supplicate, and implore, and drop to my knees, and I bring my hands together, and bow my head, and bury it into my pillow, and sob, and I lose my breath, and stay quiet, and stay still ...

and then I feel God's hand and comfort and peace. He will lead us through.

"When my disquieting thoughts became many inside of me, Your own consolations began to fondle my soul." ~ Psalm 94:19

Good night.  Going with my baby.

Another Night in the Hospital

      So we just got back from another tiring night in the hospital. It all started Monday when I checked Alexa's O2 Sats and they were pretty low for being on oxygen. They wouldn't rise even though I kept upping the O2 so I started getting really nervous. I called the cards earlier in the day and waited then when this happened called again. They called back and that is when they suggested taking in her to the hospital to be checked out. They let the ER know we were coming. I was crying because I had not even yet unpacked my cath bag and we were already going back. Thoughts of having to rush her into emergency surgery kept flying through my head. I knew it was coming but I wasn't ready, literally I wasn't ready in any way. So we called my mom to come be with our kiddies and off we went.

When we got the hospital, they were already waiting for us so they took her right back. They hooked her up to the hospital O2 and watched. She seemed to be hanging in the low 70's on their monitors. At home she was in the mid 60's. She would sometimes dip into the 60's with them too. She was pretty calm at first until they decided they should place an IV line just in case since they had to draw some blood for checking. They had to poke her twice because they couldn't get the vein. She cried so much and kept yelling ‘mama mama!’ it was pretty heart breaking. After that they did an x-ray on her chest, which of course she didn't like being forcibly held down for. Daddy helped with that duty because I didn't want to be the bad guy again.

After we returned to the ER we learned we had a room ready and that we would be admitted for observation over night. We were in the general/cardiac pediatric ward not the PICU this time on the 4th floor. We had never stayed anywhere else in the hospital beside the NICU and the PICU so this was new for us. Cardiologist mentioned that the cath lab doc had already been in contact with her surgeon and talk of even doing the surgery here locally was mentioned. They said that depending on how she did and info they gathered would determine our course of action. So we started to get settled into our new room. Alexa was hyper and happy. She kept dancing on the bed and wanting to jump up and down. She had all the nurses melting in love for her. After a few hours she finally settled down and fell asleep shortly before midnight if you could believe!

Right about the time, just I was starting to finally get comfortable and an attending peds physician and resident walk in to check Alexa out. They mention how big and cute she looks. Good size for surviving on a BT Shunt this long. They ask me what O2 they have her on and I say 1/2 liter, she follows the long cord to the pump and says something completely shocking to me "It's not on!" I said “What?!” completely in shock. “They said it was on, they hooked her up to it when we got here” I added. And she says, “Well maybe they just weaned her off slowly.” And I said, “'No I have not seen them mess with it at all since we got here." At that point the nurse walks in and the doctor asks "Is this baby on any O's" And the nurse says "Yes, 1/2 a liter and of course she is also shocked to find out she had not been on an O2 since we got there from the ER which by this point was at least 4 hours ago. In the ER I knew and could clearly see the O2 pump was on. Here is was on the other side of the bed in the back so once I saw them hook her I assumed they turned it on like they said. So at that point they said,”Well let's not mess with it if she has been doing fine.” So they left her on room air and again watched. She was okay meaning mostly in the 70's occasionally dipping into high 60's when she moved around a lot. So needless to say I was flabbergasted but in a good way, mostly. I was happy to see her be on room air with decent sats and wondering how this could have happened. But like I said, mostly it was good news that I could fall asleep to. After Alexa fell asleep her sats climbed into the mid 70's and pretty much stayed there all night. I was very relieved to say the least.

In the morning, she had to get a quick echo to make sure her BT Shunt was still okay. This was another source of frustration and tears for her but thankfully they were done soon. The same tech that did this echo did the full one on her on Friday and she said she saw no changes and that her shunt although narrow was wide open. So we headed back to our room to wait for cardiology to make their decision. I pretty much knew we would be going home but wondered what other news they had about the surgery.

About an hour or so later her cardiologist showed up and mentioned Alexa was doing good and that pretty much it was just time, time to move forward with surgery within the next couple of weeks. He explained that the extra little VSD's they found in the cath added a new level of complexity to the surgery. As if it was already not complicated enough, he mentioned that the VSD's are mostly in the muscular part of the heart and that during surgery they are very hard almost impossible to see because the heart if flat and not extended with blood. He mentioned that trying to find the hole's within the muscle fibers was like trying to know which to slabs of concrete in Haiti that were stuck together were a) meant to be that way b) like that because of the earthquake and really if you lifted one slab it would lead you down a path to other side. I love that he uses illustrations as this makes things clear in my mind. He said that fixing those holes during surgery was of upmost importance because if not Alexa would be very sick after surgery, her right ventricle would change from a pressure bearing ventricle since right now it is thickened because it has to pump to two cardiac outputs to a volume loaded ventricle meaning some of the blood in her left ventricle would decided to go through the holes and into her right ventricle putting more stress on it and not really oxygenating or helping in anyway. He said that they had talked about possibly using another catheter during her surgery but before they actually put her on bypass to enter with some small like little umbrellas that would place two disks at each end of the hole and filled with something. He said that the pressures of the heart would force the little disks into the holes and that after that cell would form around them further cementing them into the VSD's. He said he was a little worried about her being away from this hospital again as they are a little more familiar with complex cases and would really love her to be close by to be monitored. So he again mentioned that they had brought the thought to her surgeon of possibly doing surgery here, which I never thought was possible. I would be very happy if her surgeon could be here but I said I don't want him to do the surgery and have to run back out of town and not be be able to be involved in her follow up care. Dr. Papez agreed that if the surgeon did not agree to perform the surgery here this would more than likely be the reason why, since he has other surgeries and patients at his new hospital. So the plan is still on to speak with Dr. T on Friday, I can hardly wait, I'm just nervous about it.

So thankfully, we were getting discharged. She had done well on room air. They said everything was fine, her lungs were clear, her echo good. Pretty much they said that she has enough high normal oxygen levels in her lungs just not enough 'cars' to go pick up the oxygen to deliver it to her body. To remedy this she needs the surgery. Bottom line again, shunt doesn't fit, she got it in weighing 8 pounds and now she is nearly 25 pounds, three times larger! But I am thankful it has lasted this long, one cardi we met in the ER said he couldn't believe she was still unrepaired and that he had never met a baby that the shunt had lasted this long in. Docs mentioned using O2 at home as needed. And we were out of there soon after.

As we were driving her home her surgeon, Dr. T called me. If felt so great that he took the time to call and speak with me about her. He asked me about her sats about what happened and what I had noticed. I love that he always takes "our" meaning as her parents input just as important as what the doctors have to say. We chatted some but agreed to speak lots on Friday. He did give me a great suggestion though and mentioned possibly getting a new home pulse ox monitor. He said that sometimes they are not calibrated right. He said just tell them what happened and that we would like a new one. I very much disliked the one we were given anyway, because it was obnoxiously loud, couldn't control volume, kept losing the parameters, etc. etc. So today I called and I already got a new one that I like much better! Alexa has been on no 02 as of yet. She is hooked up right now and sating in the mid to high 70's on room air! I told her cardiologist I was just so frightened we would not even make it to speak with the surgeon on Friday, they said they got nervous too but after everything see she can manage a few more weeks well, he said she is not growing any more at rapid rate so things should not change so quickly it is just a steady decline.

So happy to be back home, Alexa and I were so tired so we went to bed about 8 p.m. so that is why I am wide awake at 1 a.m. but will now be headed back to bed to get some extra zzz's and dreaming of happy endings.

The Cath, Aftermath and Home

Me and Lexi doll early in the morning waiting after registration

Well we just got home a couple of hours ago. I am still sleep deprived, tired and irritable. Alexa seems happy and relieved to be home. It was a very long two days, seems like a week. Her cath went very well, no issues ~ I am so grateful. They took her back at 9:35 a.m. and she was done with the cath by about 11:45 a.m. The doc came out to speak with us telling us everything had gone well and that they found no surprises besides two additional small but still large enough VSD's that require patching when she goes for surgery. Without the cath they would have not known they were there, since doc explained they were very low in her heart and hard to see. Everything else in her heart looks like they expected, her ventricular funtion is good, pressures good, aortic arch beautiful they said however that she has definately outgrown her shunt and it's time to move forward. While we talked to the doctor they performed an echo and then she was taken to the Cardiac ICU.

This is were things got very hard, seeing her in some pain, wanting to sit up, kind of out of it, them wanting her to lay flat for at least 4 hours. She had already been laying down for so many hours I think she just wanted a change. Plus she kept asking for water, her poor little mouth so dry and so I asked if I could at least sponge some water on her lips and mouth and they agreed. Poor little one just sucked on that little sponge over and over till it was dry. I gave some to her a few times. She was very agitated so they kept giving her more sedation until she finally gave in. She slept for a few hours then awoke very groggy but finally they were going to let her eat and drink. She dranke so much water and juice and was so happy to be able to eat. Then I saw her smile again for the first time and I knew she would be okay.

Originally they had told us we would probably be going home that day but then quickly changed their minds. Her oxygen saturations were very low, running in the 60's sometimes dipping into the high 50's. They said they thought it best to keep her overnight for observation. I was sad but ready to spend the night. The night just seemed to drag. I was tired but couldn't fall asleep. I wished it was morning so we could get going. Alexa woke up off and on during the night, we watched cartoons at 4 a.m. then she got sleepy again. My mom spent the night with us and she helped carry her for a little whiles when she would get fussy. Her O2's remained in the high 60's low 70's before her cath they were about 74-78 they never returned to that just for brief seconds then would dip back down. If you see my previous post you will read how they warned me this might happen but I didn't think it actually would since they said it was unlikley. I was sad for knew this meant she would more than likely be sent home on oxygen and a pulse ox which she has never needed since being home and also that this would push her surgery even sooner than I anticipated.

So sure enough we are home and she is on oxygen, very low, but nonetheless we/somebody must be following her around at all times to carry her little portable oxygen tank everywhere she goes. That is a job. My hubby and I have been taking turns. Thankfully she has forgotten about the canula on her nose. I am waiting for them to deliver more of her oxygen tanks and pulse ox they did not give me.

So that's pretty much were we are at. We have an appointment to meet with her surgeon on Friday. It was hard going through this with her and it was only two days and it was only a cath. I am definaltey not looking forward to the initial aftermath of open heart surgery with a toddler. The only thing that keeps me going is the thought of being home with my baby's mended heart and not having to worry about her sats anymore, she will feel strong and happy again.

During our hospital stay we met a lovely couple, mamma named Neale, 'Hi Neale, it was nice meeting you guys, you made our wait more bearable ~ hope you are able to resolve the issues with Mr. Nicholas!' Also, ran into a former coworker who was visiting her grandaughter at the hospital who was diagnosed with Leukemia about a year ago. I will be praying for you. Also, thanks to my family for your support with our older kiddos and for visiting, thanks to Nana for spending a semi sleepless night with me and Lexi in the hospital, thanks to my friend Cherrie and hubby for the great gift for Lexi and lunch and thanks to all my friends and heart mommas for your cyber love notes. We appreciate all the positive thoughts and prayers offered on Alexa's behalf.

So needless to say, I am SO happy to be home and to have gotten through this now it's time to wait yet again for the next BIG step ...

Alexa looking adorable in her hospital gown and pointing to a dog she thinks is Dash (our dog) on TV

Having a blast in the kid's play area, she said "Wow!" when we set her free in it (before cath).

Today trying to keep her entertained, took a bunch of toys and books I went through all my arsenal.

And the awful last pic of her sats without oxygen {for the record}.

p.s. and sorry but I don't know what happened to my spell checker it's gone for some reason.

Getting Ready

Getting ready. Those two words sum it up for me today. Tomorrow is the cath, we must check in at 7 a.m., the procedure should take about 3 hours. Alexa will then be taken to the PICU to recover and remain under observation. They told us to plan to spend the night. I'm hoping it's not needed but preparing anyway. This will be the first time we're back 'in' the hospital since her discharge at one month old. I am dreading not being able to giver her anything solid to eat or drink after 2 a.m. not water or juice after 4 a.m. The first thing she asks for when awakes is food. Wondering if I should wake her up to give her something to eat or drink before the magic hour? If other heart mommas are reading this, how did you handle it? She has a bit of a lingering cough that comes and goes and some congestion I notice mostly at night but otherwise seems happy and normal. They are aware of this. I'm taking this as a mental preparation for the surgery to come. She hates being connected to machines and proded and poked, I am not ready to see her suffer but I know she needs this done. Just some things heart mommas and heart babies must endure. My older kiddos are nervous for their little sister and knowing we will be at the hospital, left a note for their teachers to let them call us during the day if they would like. So off to continue getting ready ... and thanks to everyone including my friends and family for your support and prayers.

Meet Wendy

Meet my long time friend and CHD survivor  

Wendy...

 

How old are you?

33 years old

Briefly describe what your life currently looks like?

I am a mother of two healthy boys: Cristian 7 and Lucas 3 months old. I've been married for 12 years. I also have my own wedding photography business, this allows me to stay home and take care of my children and husband.

What is your CHD?

I have Endocardial cuhion defect more commonly known as atrioventricular septal defect (AVSD). I was born with this condition and diagnosed when I was 2 months old. In AVSD, there may be a large hole in the center of the heart where the wall (septum) joins the upper and lower chambers of the heart. The tricuspid and mitral valves may not be separate. Instead, there can be one large valve between the upper and lower chambers of the heart (common atrioventricular valve).

When did you/your parents find out about your diagnosis?

Shortly after coming home my mom started noticing that I had bluish lips, nails hand and feet, tired while feeding it was a struggle. I would break out in a sweat, cried a lot very jumpy she also noticed I had a rapid heartbeat. I had trouble breathing because my heart retained water and it would go to my lungs. She immediately took me to pediatrician who then referred us to a cardiologist.

What surgeries or medical procedures have you had to endure/overcome throughout your life?

That's when my poor mother’s world was turned upside down. Being a young women (20's) not knowing much English this was very scary for her. This was only the beginning of numerous caths, echos, angiograms, ekg. Aside from all these test’s, being away from my parents I spent my childhood in a hospital. Back then the technology was not what it is now and for that reason I had to wait until I was 4 years old to have my open heart surgery.

Tell us about your childhood memories with CHD?

It’s amazing to me that I recall so much at such a young age. I remember having my blood drawn all the time several times a day, screaming and fighting the nurses, after a while you become immune to it and you know it has to be done so you surrender. One of the things that stands out in my mind all the time is when the nurses could no longer draw blood from my arms they would draw it from my feet and head very painful, but by this point I would just lay there and let them do their job. Caths and angiograms were the worst; I would have to be in bed for days after this procedure. Keeping my leg still that's hard for a child to stay still, but my parents by my side reading and talking to me helped.

How did CHD affect your relationship with your siblings and parents? Did they treat you different? Did you appreciate this or resent it?

My relationship with my brothers and sister were never affected by my CHD. I believe it was never an issue for us because once I had my surgery it was like any normal young girl, with a few trips to the hospital once in a while nothing serious.

At any point as child do you remember resenting your parents for putting you through medical procedures?

No! I never resented them because I knew that what happened to me was not their fault. Am grateful to my parents for doing everything they could despite language barriers and lack of medical knowledge. My mom always explained the best she could the procedures I was going to endure and she would tell me that these procedures were necessary to make me better and once I had my surgery I would be able to run and play without getting ill. I don’t want to say I resent my parents, but I do wish they would have allowed me to enjoy kindergarten, ride my bike or go to the park and just run and roll on the grass. Instead I had to sit on the side and watch all the other kids have fun. All because my mom was afraid I would fall and injure my incision or re-open it . The truth is that I was aware of my problem and I knew my limits or how far I could push myself yet my mom didn’t listen. I didn’t learn how to ride a bike until I was 11years and that was behind her back. My mom was so protective even about the food that I ate she had in her mind that if she fed me liver all the time if would make me stronger so needless to say I didn’t have a hamburger and fries until I was 13 yrs for that matter I didn’t have anything yummy because to my mom it was all junk food without any nutrients. She’s right, but everything in moderation is okay =)

How has CHD affected your life besides your health? Did you feel different?

I live a pretty normal life with a couple of glitches here and there don’t feel different just aware that I have to be cautious. I feel fulfilled as a woman.

What do you consider to be your greatest accomplishments to this day?

Being a mother! Maybe to some this is weird, but to me it was the biggest gift because I was always told I couldn't have children. Now I have two beautiful healthy boys.

What fears did you have or do you have today?

My biggest fear was that my children would be born with CHD. I went through so many cardiologist and high risk OBGYN before I got pregnant to find out what were the chances of my children inheriting my condition. We were told that it was very unlikely for them to have my condition, I felt confident to get pregnant even though I knew I was a high risk.

What helped you cope with your CHD? Or gave/gives you strength?

I accepted this condition was part of me and that nothing I did would change it or make it disappear. I never felt sorry for myself or blamed anyone or questioned why me I just knew I was special. I never focused on my scars I actually call myself “scar women” I have so many scars from procedures and surgeries of course the incision down my chest is what people see the rest are hidden. What gives me strength to endure anything that comes my way is my faith in Jah knowing that one day not far I will have a healthy perfect heart.

Do you have any physical limitations? Do you expect to need further medical intervention?

Am not sure you would consider a limitation that I am scared of heights. Can't do rollercoaster’s I feel like my heart is going to jump out through my mouth. The most recent intervention was 7 years ago when I had to undergo lower extremity bypass. The reason for this procedure was because when I was small I had a numerous number of caths done.  On on my right leg a piece of vein was catheterized and I wasn't getting enough blood to my feet. I noticed that my right foot was getting numb more frequently and that my toes were blue that’s when I got scared went to see cardiologist who ordered an angiogram who explained that I needed a graft put into my leg to provide blood flow. Surgery resolved the problem and am fine now. For the rest of my life I will have to have yearly check up with echo’s. And I hope I don’t have to have another lower extremity bypass because the graft either blocked or its not doing its job.

What were you told about having children?

That I wouldn't be able to have children. I was told this when I turned 14 yrs old. So for a long time until I got married I carried this I guess you can say it really didn't face me until the moment came were my husband and I wanted to conceive. That's when I started consulting different cards and OBGYN after listening to all the doctors my husband and I decided to try. We were blessed with our first son Cristian his now 7. My pregnancy was high-risk I suffered from High blood pressure throughout my pregnancy and labor was difficult 31 hours yet all worth it. We waited seven years to have our next child this pregnancy was pretty normal except for the really bad "morning sickness" labor was also critical with Lucas I was in labor for 20 hrs at that time Dr. decided to perform an emergency c-section. Our beautiful baby boy was born unfortunately I wasn't able to hold him right away because I was recovering from surgery. Once I was more alert I checked him from head to toe. That's when I discovered that his feet were blue as well as his mouth I freaked out and immediately called the nurse and pediatrician to come and check him they checked his oxygen levels which were normal and they called his blue tint "cyanosis" its very common on newborns when there circulation is still a bit immature. I was very scared and concerned because of my history that I had nurses check his oxygen almost every hour and pediatrician checked on him several times a day. I asked them to order an echo cardio for my piece of mind, but they didn't because everything was normal. Once I was released from the hospital he went to see his pediatrician who found my lil Lucas to have a murmur which was detected through his back not his chest. She immediately gave me a referral to cardiologist/ I made him an appointment with the cardiologist who treated me when I was younger I felt confident because he knew my history. Lucas had an echo done and they confirmed that he did have a small murmur that's very common on baby's. I felt better knowing they saw his lil heart and that he did not have my condition. He has to be checked in 6 months and at that time murmur should be closed if not we will discuss further.

At what age did you start feeling the need or independent enough to deal with CHD on your own? Or do you still enjoy having the support of your family?

I knew that I had a special heart that’s what my mom would always tell me and that I needed to be careful when doing things. I guess you can at a very young age. I will always need my family no matter how old you are you will always need them. This might sound a little weird, but yes I love to feel cared for and know that they are still so concerned about me as if I were a little girl.

What advice would you give children growing up with CHD?

Do not allow this disease take control of your life you set the bar don’t feel sorry for yourself you can do anything you set your mind to. Don’t be satisfied with only one opinion seek out several and weigh and then make a decision. If I would have listen to my cardiologist and mother I would have never experienced the greatest gift of being a mother.

As an adult with CHD what words of wisdom can you provide parents raising children facing great challenges with CHD?

I would say don’t smoother them because you’re afraid that something can happen or don’t stop them from doing things because you’re afraid allow them to do things to experience new adventures. I know that as parents our first reaction is to shelter our children thinking that we can protect from something happening to them. The truth is that they will grow to be their own person and make their own decision even if you don’t agree with them so why not start now.

Is there anything else you would you like us to know, about your past, present or future, or anything else you would like to share?

Not that I can think of at this time.

Wendy, you are a beautiful and strong woman, wife, mother and friend! Thank you for allowing me to interview you and be part of the Heart Mom Chronicles.  I know seeing you gives me hope for my own CHD baby and I'm sure you will give many other moms that read this hope and insight into living life with CHD.  Much love and happiness to you and your family! 

Heart Catheterization Date

Since last Thursday I knew they would be calling.  I was a bit anxious every time the phone rang and didn't ring.  I called today myself to make sure I wasn't suppose to be the one calling, they said no, they would call but would be more than happy to transfer me to hospital procedure scheduling so I could speak with them.  I said 'sure' and hung up.  I was scared.  Scared to bring this day on any closer than it needed.  Scared to actually have to put it in writing in my calendar.  So I nervously took a breath and waited some more.  A bit happy to have escaped facing this for a little longer - although I knew it was coming, they would be calling.   

The call came as I was driving to rehab therapy for my leg. I quickly parked and messed with my crutch and pulled out my planner.  I had already thought of some dates I wanted, early in the week so all the normal docs are there and I still had a whole week of normal business days ahead of us in case I had questions or needed to take Alexa in to be seen for some reason.  Also, not to soon, but early enough to have the cath results ready for our consult with her cardiothoracic surgeon on January 22.  Well, they said they only had Friday, January 15th available, this would give enough time to get the info to her surgeon but alas not provide me the reassurance of the 'regular business day' instead it's on a Friday, right before not just a weekend but a holiday weekend.  I know it may sound insane to some, crazy, petty but when my child is in the hospital having an invasive heart procedure that will require anesthesia etc.  I want all the top docs present, not home or possibly on vacation.  But I guess I will not jump to conclusions that I will be needing them, instead I will just pray/hope/assume that all will go well.   

So again, Heart Cath Date is on Friday, January 15th check in time 7 a.m.  Alexa cannot have anything to eat or drink after 2 a.m.  The cath should last about 3 hours.  She will also be given an echo while she is out.  The scheduler told me they would most probably be keeping her overnight for observation in the PICU.  So I have to plan on sleeping in the hospital that night with my baby.  I'm hoping she is doing fabulous they let us come home but I guess we shall see.  Did your kids need to stay over night?  Her cardiologist also mentioned that, sometimes, but rarely, the children come out of the cath lab with lower oxygen.  He said if this happens he would send Alexa home on oxygen and we would have to schedule her surgery sooner.  Hope again, this is not the case.

Now, why does Alexa need this heart cath?  Well, this is to provide information to the surgeon before surgery on the inside workings of her heart including pressures and blood flow.  During surgery they cannot collect this info as the heart is stopped and not beating. 

It hurt's to type those words. 

To think of my baby's beautiful heart being stopped and not beating is VERY SCARY!  So very sad.

So anyway, that's all I can take talking about right now.  I need a break from these thoughts and to have some lunch.

As a side note, therapist thinks it will take me about 12 weeks to be able to walk normally again.  He said I have lost a lot of flexibility and strength in my leg.  He said I need to get it to neutral position meaning -8 to be able to walk again.  Right now I am at 38 degrees the wrong way.  So I have a lot of foot exercises to do.

And one last thought, last time Alexa had a heart cath, back when she was a newborn, she had her artery nicked and developed a blood clot. So another reason why I worry.  Just so you know.