SO HAPPY!!!

Mikey had another echo done today. I was so nervous because, honestly, you never REALLY know how he's doing. I can't see his heart beating in his chest so I only know how he SEEMS to be doing. I learned the hard way on one echo when I thought he was doing great but found out that he needed another procedure. Anyway. We got to the hospital at 7:55am and got checked in. They have this awesome ball machine that's HUGE! Mikey loved it.

Here's a good picture just so you can see how big the ball machine is. It's not even all in the picture.

So then we did vitals and checked his pulse ox (95% Way to go kiddo!!) Once all that was done we wen't downstairs and did the echo.

He did so good! Well at least he did up until the end when we ran out of pears and she had the probe up by his neck to get the top of his heart. He was done with it by then and luckily she only had to do two more pictures :)

After the echo was done, we went back upstairs and waited for the doctor. There was a cool wall toy which kept Mikey happy.

We didn't have to wait too long. Dr. D came in and told us some FANTASTIC NEWS!!!! Michael's heart looks about the same maybe even a little bit better! His pressures are just a little higher than a normal person's should be which is FANTASTIC! It means that his ventricle is almost completely relaxed (YAY!!). He still has a little blockage in his valve but Dr. D isn't too worried about it. He said it's very likely the blockage will stay the same and very unlikely that it will get worse. His next echo is in 6 months rather than 4. Dr D said depending on his next echo, we can hopefully "be crazy" and have an echo once a year!!!!!! He's getting better and I am SO HAPPY!! A year ago, great news like this seemed so far away. I am SO PROUD of my son. He has overcome so much and I am so blessed to have him. I love him more than words can describe. Thank you for all your thoughts and prayers. They mean so much to me, my family, and especially Mikey. God bless! <3

Echo Anxiety

Mikey's next echo is in a week and a half and I'm already finding myself anxious to see how his heart is doing. It seems like no time at all passes between his echo's but in the two weeks before each echo, time seems to come to a halt. I'm not sure if I can describe the feelings I get before and during each echo but I'm going to try. Gradually, as his echo gets closer, I get more and more scared. I'm mostly scared of the outcome. Is he getting better or is he getting worse? With a heart baby, there's no telling. There are no symptoms to tell me he's getting better or worse, only an echocardiogram can tell me that. There is a constant fear in the back of my mind. Any time, we could be told that he needs surgery. Any time, he could be taken from us, though the chances of that now are much lower (a small comfort to me). I HATE that my baby boy has to go through all of this. I HATE not knowing if he's getting better or worse. I am optimistic that he is getting better but there is always that "what if" in the back of my mind. What if he isn't getting better? What if something goes seriously wrong and I don't know about it until it's too late? What if he needs more surgery sooner than his doctors expect? What if he doesn't make it through his surgeries?
That last "what if"... I DESPISE that "what if".  I don't like thinking that way. I try not to constantly, but as I've already said, it's always in the back of my mind. Nothing about having a child with a CHD is easy. The constant fear of something going wrong really takes a toll on me. I have faith that God will pull Michael and my family through. He has a plan for Michael.
I try to keep my mind of off the negative "what ifs". There are some positive ones too that I mostly focus on. What if he is getting better? What if his heart relaxes and his ventricle gets bigger? What if he doesn't need ANY more surgery?
No more surgery....... That is the news I'd LOVE to hear one day. Who knows? Maybe that day will be May 1, 2012. Probably not but that's how I like to look at it. "Great news! He doesn't need any more surgery. He's perfect and his heart is perfect." Oh, how I'd love to hear those words! Only time will tell. Until then, it's one day at a time

MICHAEL'S FIRST STEPS!

Finally, at almost 14 months old and TONS of practice, my precious little boy took his first steps by himself. It's hard to believe it. When he was born, I couldn't really think past his heart surgery, recovery, and getting him home. Now, he's over a year old, still crawling, growing so fast, and he's SO close to walking. He took his first steps Thursday (April 19, 2012). I was SO excited! Finally, after everything he's been through, he's going to be walking. I cannot describe how happy and proud I am of my little boy. I love him so much. Here's a video of him walking. We had been practicing so much that he was basically done with it by the time I got this video. 

I LOVE YOU SO MUCH MICHAEL! I AM SOO PROUD OF YOU!!!!

Mikey's First Trip to the Zoo

It was beautiful outside today. What better to do than take the kiddos to the zoo? Alas, we went to the zoo.

My sweet little boys <3

Mikey isn't too sure about this.

Daddy and the boys

I'm not sure he knew what to think through the whole visit.

He liked the parrots...

...and the fish.

I just could not get Mikey to look at the camera.

We had some snacks.

We stayed for a couple of hours. And he still wasn't tired. It was such a fun trip even though most of the exhibits were still closed. A monkey got loose while we were going through the jungle and we got rushed out the door. Luckily, we were basically at the exit anyway. I can't wait to take the kids when Mikey is a little bit bigger. 

While I'm writing a post, I'll add that Mikey is SUPER close to walking!! I don't have a video but I have a picture.

Look at him go!!! I give it another month at the most and I'll have TWO toddlers. Oh boy!

A year ago today...

Michael had his first open heart surgery. A year ago today, he looked like this:

But today, he looks fabulous!! No surgeries any time soon and as strong as ever. A year ago today was the most terrifying day I have ever had. Though my family was there and they did everything they could to lighten the mood and support me, nothing was going to take my mind off of my precious little boy. I'm so proud of everything he has accomplished in the past year and I look forward to many more years to come. 

Michael today:

ONE!

One year ago today, I got induced to give birth to my precious little boy. I didn't know what was in store for me and my family. My perfect baby was born at 4pm and it was magical, love at first sight. February 21, 2011, is a day I will NEVER forget; it is the day our lives changed. Since that day, our lives have been full of ups and downs. Some of the downs: doctor visits, countless echocardiograms, three hospital stays, more pokes and pricks than I can count, a staph infection, and most importantly, SURGERIES. But, now I am done looking at the downs from this past year. Today is a day to CELEBRATE the most perfect blessing God could have given me and all the achievements Michael has accomplished. This year, Michael has not only fought for every day he has but he has also rolled over, sat up on his own, army crawled (so long I started to worry about his development), eventually regular crawled (FINALLY), pulled himself up to standing, walked along furniture and while holding my hands, and learned to say "mama" (his first word) and "dada". You'd never know that my son had such a rough year just by looking at him. He is PERFECT in EVERY way. His perfect little heart beats perfect, washer-sounding beats, and though sometimes his blue color scares me and the fact I can feel his murmur through his chest terrifies me, he's still here. His precious little heart is still beating. He's such a fighter and all the fight he's put into every day is finally paying off. He's getting better and for now, that's all I can ask for.

HAPPY BIRTHDAY MICHAEL!!! I love you more than I could ever put into words. 

What is it like to have a child with a CHD?

Yes, I do realize I have posted 3 things in 2 days, but I was going through some old stuff and found my last two posts. I didn't write these although I certainly wish I did. Enjoy!

You passed me in the shopping mall...(You read my faded tee)You tapped me on the shoulder...Then asked...`"What's a CHD?"

I could quote terminology...There's stats that I could give...

But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril...

It's wondering...Lord what's your will?...

......It's monitors and oxygen tanks...

It's a constant reminder...to always give thanks...

It's feeding time, calories, needed weight gain...

It's the drama of eating...and yes it's insane!

It's the first time I held him...(I'd waited so long)

It's knowing that I need...to help him grow strong...

It's making a hospital...home for a while...

It's seeing my reward...in every smile.

It's checking his stats...as the monitors are beeping...

It's knowing that there... is just no time for sleeping...

It's caths, x-ays and boo boos to kiss...

It's normalcy...I sometimes miss...

It's asking...do his lips look blue?

It's cringing inside... at what he's been through.

It's dozens of calls to his pediatrician...

(She knows me by name...I'm a mom on a mission).

It's winters homebound...and hand sanitizer...

It's knowing this journey...has made me much wiser.

It's watching him sleeping...his breathing is steady...

It's surgery day...and I'll never be ready.

It's handing him over...( I'm still not prepared...)

It's knowing that his heart... must be repaired...

It's waiting for news...on that long stressful day...

It's ...praying...it's hoping...that he'll be okay.

It's the wonderful friends... with whom I've connected...

It's the bond that we share...it was so unexpected...

It's that long faded scar... down my child's small chest...

It's touching it gently...and knowing we're blessed...

It's watching him chasing...a small butterfly...

It's the moment I realized...I've stopped asking...why?

It's the snowflakes that fall...on a cold winter's day...

They remind me of those...who aren't with us today

What does it mean to be the parent of a child with a heart defect?

It means going into your baby's room a dozen times a night just to check and see if he is breathing.

It means standing over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head down close to the baby's face to try to hear him breathe.

It means that when you don't see the chest move and you don't hear the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the baby's nose to feel the warm air on your finger - until you wake the baby and he stirs - and you're thankful so thankful that he's still with you.

It means waking up with a start every morning, jumping out of bed and running to your baby's room wondering why he isn't crying yet? It means feeling a huge sense of relief when he hears you and opens his eyes and smiles, It means saying a prayer of thanks for another day.

It means measuring out his medication and panicking if he spits some of it out, How much did he spit out anyway? 1cc? 2 or 3? And wondering if you should guesstimate how much more he should have and worrying about overmedicating.

It means checking his nailbeds against your own to determine how blue he is today, It means asking your husband, your mother, your sister, "Do his lips look blue to you?"

It means snuggling him in an extra blanket for fear he wont be warm enough.

It means worrying that even a sniffle could cause an infection that would harm the heart.

It means taking your baby to the doctor and then worrying that the baby will get something even worse from being in the waiting room, so it means walking back and forth and back and forth in the corridor until the nurse calls your baby's name and takes you straight back to the examination room.

It means knowing that everyday is a blessing and a gift, it means knowing that you are the luckiest person in the world just to be a parent, It means cherishing every moment, every breath with such an intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby's life.

It means praying that your marriage is strong enough to endure the hospitalizations, separations, and the grief.

It means your own heart knows a pain no parent should know.

It means feeling weak and helpless and angry and depressed because your child's fate is out of your hands, It means feeling strong and determined and brave because you know you have to be.

It means your love knows new unlimited boundaries, it means your pride in your child's accomplishments is unparalleled, It means your pain has taught you a deeper sense of compassion and understanding than you ever imagined.

It means we are united by the same feelings, it means that we all know the mixed up emotions of living with death-but more importantly of living with Life.

It means that even though we are strangers we are more to each other than friends could ever be.

Just some thoughts...

Michael's first birthday is just days away. As it approaches I find myself doing a lot of thinking about the past year and how it has affected me, my life, my family, and my family's lives. I never realized how ignorant I was to birth defects until my son, my beautiful little pride and joy, was born with a very rare and serious birth defect. I, like a lot of other moms, thought, "It won't happen to me. My kids will be perfectly healthy with absolutely no problems." etc., but boy! was I wrong. It never occurred to me that infants could have a major heart surgery at just days old, much less did I ever think it could happen to me.
But it did. I did everything right during my pregnancy, thought that nothing could possibly go wrong with my little baby, but God had other plans for me, my family, and, most importantly, my son.
When I gave birth, I had no idea about my son's heart defect. All of a sudden, doctors and nurses were throwing all sorts of information at me. I can not describe how overwhelming it was. I got to hold my little boy twice in his first day of life. Most mothers get to hold their baby and love on them right after birth for more than a minute, maybe two, and most mothers unknowingly take that moment for granted. I didn't get to hold him very much throughout the first week of his life. I watched my little boy turn blue. I watched him struggle and fight for his life. I watched him get poked and pricked more times than I can count. I walked him down the hallway to surgery. I sat in the surgery waiting room with my husband and family waiting for the phone call to tell me he was okay. I saw my little boy have tubes down his throat, IVs in every limb and even his head, a drainage tube in his chest. I didn't get the privilege of watching my little boy's umbilical cord turn into a perfect little belly button. I watched as my little boy suffered, fighting a staph infection just six days after coming home from the hospital. I saw the scar on his chest and I see it every day. It is a constant reminder to me that life is so very precious. Never take any minute for granted. All those moments when you just wish the day was over or wish something were different happen for a reason. I do not yet know God's whole reason for giving me this amazing child. I do know that Michael has helped me grow as a person and a mother. He has taught me more than I could learn anywhere. He has taught me the true meaning of life and to never take anything for granted. I love my children more than words can describe. My life would be so incomplete without them <3

CHD Awareness Week

Well, it's CHD Awareness Week, so here are some facts about my sweet baby boy's CHD.
Pulmonary atresia with intact ventricular septum (PAIVS) is a condition in which the valve that allows your blood to flow from the lower-right chamber (right ventricle) of your heart to your lungs (pulmonary valve) hasn't formed properly or is closed (atresia). Michael's was closed.
In children with PAIVS, the closed pulmonary valve prevents the baby's heart from pumping blood into the lungs to pick up oxygen. Blood must be sent to the lungs by another route to provide oxygen for the newborn.
PAIVS is diagnosed by conducting a variety of tests: cardiac catheterization (a catheter is inserted into a blood vessel in the groin and is guided to the heart using x-ray imaging, this test takes pictures of the heart), echocardiogram (ultrasound of the heart), and chest x-rays. All three tests were done on Michael. He's had countless echocardiograms and chest x-rays.
A child who has PAIVS requires urgent medical evaluation once symptoms develop. There are many different treatments. Michael had a balloon valvotomy. Normally, this procedure is done with a catheter through the groin but Dr. D (cardiologist) and Dr. H (heart surgeon) did it with open heart surgery (OPS). After about 5 months, he had the same procedure done because his pulmonary valve had blockage but the second time they used a catheter, not OPS.
Some children may need a pulmonary valve repair or replacement later in life. Right now, Dr. D is confident that he can go until he's 5 or 6 before he needs more surgery. As of right now he WILL need more surgery but there is always the hope that he can bounce back and not need it at all.
As of his last cardiology checkup, he's getting better. The pressures in his heart are getting lower (which is a good thing) but only time will tell if he will or won't need surgery. I pray every night that he will keep progressing and keep getting better. He's a fighter and my little hero <3

The Rest of Our Story (so far)

Okay, so we left off with Michael's staph infection. He came home and stayed (finally!!). We had a wonderful Easter

Michael's big brother, Ben, just LOVES him!

Michael had several more echocardiograms. However, this one stands out in my mind. (Pic taken during echo on May 3rd)

This was the day we found out Michael's valve wasn't working properly. Dr. D told us that he needed a balloon procedure to try to knock loose some blockage that formed around his valve. They do this by using a cathedar through the groin and weaving it up to his pulmonary valve. They then take a balloon and blow it up. He had this procedure on July 29th. We got to Children's at 5:30 am. This is a picture of Michael sleeping on me before they took him away.

We waited as our son was in surgery. This was a banner hanging up in the lobby. I found it extremely comforting.

They finished his surgery at 8:52 am and Dr. D came to talk to us at 9:15 am. He told us that he ballooned Michael's valve as much as he could but it didn't work. His valve is growing back closed and so Dr. D wanted to monitor him every two to three months for six months or so. We were informed that ballooning would not work for Michael anymore. In other words, his only other option is more open heart surgery. Worst news we could have gotten. After another hour or so we finally got to see our little boy.

Luckily this time it was only an overnight hospital stay. Over the past 10 months, Michael has been through so much. Open heart surgery, staph infection, a balloon procedure, countless echocardiograms, and many days and nights in the hospital. I am very happy to report that he has not been in the hospital since his last procedure. He has over come so much. He rolls over, pulls himself to standing, sits up by himself, and even started saying "mama" on Christmas. I am so very proud of him and even though he has been through so much, I am SO thankful. His condition could be so much worse and oddly I find comfort in that. He's growing up and one day he will be normal except for his scar on his chest. His scar is a constant reminder to me of how precious life is and how blessed I am to still have my baby boy. The doctors and nurses at Children's saved his life and I can never express how thankful I am to them. Without them, my little boy wouldn't be here today, much less be getting better.

That's right, MY LITTLE BOY IS GETTING BETTER!! He had an echo on January 3rd and the balloon procedure is actually working!! The pressures in his heart are going down. I have more confidence now that he can wait until he's 5 or 6 before needing another surgery (yes, he will need more surgery eventually). Thank you all for your love, support and prayers. I love and am thankful for each and every one of you. GOD BLESS!!

Michael's Second Hospital Stay

So, I'm going to continue our story where we left off. Michael came home March 14th from his first hospital stay. On March 20th, he was inconsolable. He cried, and cried, and cried.... I made the observation that he didn't even cry this much when he was in the hospital getting poked and pricked left and right. I knew something had to be wrong. I checked his incision and he had yellowish, redish drainage oozing from it (kinda gross really). We took him to the ER at Children's.
When we got there, we checked in and told them what was going on. After about half an hour or so, they came and got us and took us to a room off of the waiting room. They didn't want Michael in the waiting room with all the sick kids since he had "an open sore". We waited for several hours but we eventually got into a room. They swabbed Michael's incision to test it for infection and traced around the redness. The doctor said that it was definitely infected without running any tests. They told us that he would need to be readmitted for IV antibiotics. Michael wasn't even a month old. This is what his incision looked like at this point (caution it's not too pretty):

The nurses started trying to find a good vein to put in an IV. My poor baby had been poked and pricked so many times that they couldn't find ANYWHERE to put an IV. They asked me if I opposed to putting the IV in his head. I told them it was fine if it was the only other place. And so....

They put it in his head... Once they got the IV in and all set they took us up to our room. This is what Michael looked like at his point:

He ended up having a staph infection. As if having a baby who had open heart surgery less than a month ago wasn't enough of a nightmare, my sweet baby boy now had a staph infection. I never knew my heart could take so much pain in such a short amount of time. 

Over the course of 9 days, Michael slowly got better. The IV in his head failed after a couple days of antibiotics and so the poking and pricking to put in a new IV began all over again. I'm very happy to say that they didn't put it in his head again. This is what his incision looked like after his antibiotics:

Much better!!!! Michael finally came home on March 29th. We were all so happy to have him home. 

Alas, I am out of time for now. I will finish updating our story when I can. Thank you all for reading!!

Michael's Life So Far

On February 21, 2011, my entire world got flipped upside down. I went into the maternity center at 7am to get induced. I had a fairly easy labor except I got so nauseous even nausea meds didn't help and my epidural was stronger on my left side. At 3:30pm, the nurses had me start pushing (before my doctor even got there). After about three pushes, they said (in mid push), "okay okay! Let's wait for the doctor!" My doctor got there about 5 minutes later and another three pushes later Michael Joseph Jones was born. He was born at 4pm, 6lbs 12.4oz, 20.5 inches long, and he was so beautiful! My wonderful mother dragged my step dad and brothers all the way up from Alabama so she could be here for the big day. She helped me with everything and I never dreamt of how much I would need her during Michael's first days of life. She cut his cord and they laid him on my tummy while they cleaned him up. It was love at first sight. They took him away and did the usual newborn screens but they never wrapped him up and brought him back to me. His forehead was blue (the nurses called it a bruise but I knew better). He wasn't crying like they wanted and my motherly intuition told me something wasn't 

right. After about 10 minutes, they took him away to the NICU.

After a couple hours of not seeing my baby, I finally got to go see him. I stayed in the NICU with him for a while. They did his first echocardiogram of many to come. The lady who did the echo wasn't allowed to tell parents what they find so my husband and I sat there for 30 minutes while she took pictures of his heart. Finally, a doctor came in during the echo and told us that the anatomy of his heart wasn't right. They sent the pictures to the children's hospital and a cardiologist finally gave him the diagnosis of pulmonary atresia with intact ventricular septum (PA/IVS) the cause of which is still unknown. They then told us he needed to be transferred to the children's hospital immediately. They let me hold him one last time and even took pictures for us.

I had the hospital call my doctor so I could leave with Michael. He said he didn't see why I needed to stay so he cleared me for discharge 4 hours postpartum. The transport team took Michael at 8pm. After he was gone I was told that I had to wait for a rhogam shot and it would take an hour and a half for it to be prepared. 4 hours later we were still waiting. I finally got my shot at 12:15am and was discharged. I only got to hold my little boy twice during his first day of life.

My husband, mom, and I got to the children's hospital at 1am. We still were not allowed to see him. I was prepared to sit in the waiting room all night if I had to, but my mom and husband told me I needed sleep so we went home around 2am. I got maybe an hour of sleep that night and came back to the hospital at 6am and finally got to see my baby boy.

The following is the notes I kept throughout Michael's first stay in the hospital:

2/23- little Ben meets Michael

2/24- Michael's heart surgery:

-9:40am - took to surgery room

-10:51am - finished prep

-11:24am - made incision, cut sternum

-12:15pm - still in surgery, he is stable

-12:40pm - ready to close

-1:05pm - doctors report

-2:35pm - watching breathing

-2:56pm - putting breathing tube back in

-3:10pm - finally got to see Michael! Hardest thing I have ever seen

2/25- echocardiogram, family goes back to Alabama, my mom stayed with me through everything. I couldn't have made it without her

2/26- 4:50pm - got to hold Michael for the first time since his surgery, started phototherapy for jaundice

2/27- 12:30am took out breathing tube, did good for hour and a half, blood pressure and heart rate dropped so put it back in

2/28- echocardiogram, hubby's birthday

3/1- 6:30pm took out breathing tube, my sister flies home

3/2- took out IV in left foot, got to hold and bottle feed, put in crib

3/3- 7:30am drainage tube and pacer wires taken out, my birthday

3/4- echocardiogram, 5:30pm surgeon tells us they are going to turn off prostaglandins (he needed them when he was born to stay alive) and his heart looks better

3/5- 2:30am turned off prostaglandins

3/6- echocardiogram

3/7- echocardiogram

3/8- 6:15am breastfed for the first time, 9:00am UAC removed, feeding tube taken out

3/9- taken off constant monitoring

3/10- echocardiogram, 2:10pm dr says can go home in a week or so, 4:30pm moved out of NICU

3/13- dr says can go home tomorrow!

3/14- 5:30pm MICHAEL COMES HOME!!!

Michael was home for 6 days. He got a staph infection and had to go back to the hospital. I'll post more about that later. Out of time for now. Thank you all for the love and support through our hard time. I love you all!!