Tuesday, March 29, 2011

Giuliana's story... VSD

As told by her mommy, Lori.
Giuliana is 3 years old.  She turned 3 on Feb. 15th.  I had a normal pregnancy.  No high blood pressure, no diabetic issues and worked out at the gym almost 6 days a week up to 8 months of pregnancy.  I did have single umbilical artery, which isn't very common but not incredibly serious.  Before I go on I should let you know that I am a labor and delivery RN so I was and am blessed and cursed with too much knowledge.  Single umbilical artery is if you haven't gathered, a condition in which instead of having 2 arteries and one vein feeding the fetus a person has one artery and one vein.  So I was monitored with non-stress tests once a week after 5 months.  I was induced 8 days early, on Valentines Day,  due to lack of evident amniotic fluid..........And Possum (Giuliana's nickname) was born at 5:25 pm on the 15th of Feb.  I was not in labor long and only pushed for an hour.  Giuliana had a normal APGAR of 9 and was perfect.........still is. 

  During Giuliana's post natal checks, the Dr's noticed a fairly prominent heart murmur.  I was not alarmed due to the fact working on any given day in post partum I could easily find a murmur in at least 7 out of 10 babies born.  Her's was loud and so we had a sonogram done.........and a visit with a cardiologist............and before we left we knew we'd have to have the murmur repaired due to a massive ventral septal defect,  before Giuliana turned a year old.  Uh..........Being post partum and lacking sleep, food and valium I was pretty stressed out but thankful the Dr's felt it was not an acute situation and I could take her home.  My husband, poor thing was very stressed. 

  We got home 3 days after Giuliana was born and had an awful time.  She had reflux, she wouldn't latch on and I was pumping what seemed like non stop.  I couldn't lay her down on her back without her barfing through her nose.....Which meant I'd keep her in her little chair for a half hour while I pumped and made sure she was burped fully.  I noticed about 3 days in that when I laid Giuliana on her side to try and nurse.......she would lose her color in the top half of her body and I could see a distinct midline purple marking where her blood was pooling to the lower half of her body (if you're nursing in a cradle position the part of the body of the baby that is in you're holding, cradling arm)......I had never seen that before but dismissed it as her just adapting.  She wasn't adapting, her blood wasn't circulating properly and a week later I noticed her respirations had increased, her lips had become cyanotic and her pulse was off the charts.  We went to the ER.............She was 3 weeks old.

  Im going to spare you all the time we spent in the hospital because I have a feeling you have been their......medication regulation, things working and then not working, hope and then hopelessness.  I will say that we consider every day with Giuliana a blessing.  We complain about very little after spending the amount of time in the PCICU with parents who had been there for months and felt guilty for leaving so fast after her procedure.  After her procedure we were informed that Giuliana had 3 other additional holes in her heart that were repaired and we are lucky that she will never need another procedure to replace or repair anything in her heart ever again.  I can't help but feel guilt hearing of those such as yourself who have lost a child.  I desitnctly remember telling Giuliana one evening shortly after her procedure that it would be ok if she left and that I was blessed to have her for the few weeks that I did.  And saying these words now and thinking of your loss and having to say good bye to your child brings a steady flow of tears to my eyes. 

  Giuliana is thriving now.  Still considered on the small side but having two Italian parents who are not small by any means I laugh at this statistic.  She eats, sleeps, poops, loves, plays, breathes, smiles, is the most defiant 3 year old ever at times and I still fight with wanting to spoil the crap out of her for what she's been through but at the same time knowing that I need to raise a strong and indipendant child and that spoiling her will no doubt bite me back in the ass at some later point in life. 

 Even though If I have another child, being 35 means I will automatically have to go through further screening to test for various defects, I will opt for more invasive testing just to make sure I won't have to go through what we had to with Giuliana with our next child.  I think parents, first time parents and young parents should know there are tests physicians can order to help shed some light on congenital defects of all kinds.


Tuesday, March 22, 2011

Aly Jean HLHS

As told by Alys mommy, Jenny.
My husband and I had been married for 3 years when we decided it was time to add one more
to the family. On November 14, 2008 I found out we were having a baby! We were ecstatic!
For some reason, I just knew I was pregnant. I bought pregnancy tests and took one everyday
for 5 days before that. I just had this feeling~ I knew we were pregnant. Finally, I got a positive
one! (2 actually- one for back up :) ) For the next 6 months we blissfully planned for the arrival of
our baby. We painted a nursery, we registered for gifts, we picked out a crib... the fun stuff. :)
At our 20 week ultrasound, the tech was really struggling to get a good view of the heart. She
kept saying, "I can see it, I just can't get a good picture of it." She didn't seem concerned, she just
kept laughing that we had a stubborn little baby who wouldn't move the way she needed her to.
We laughed right along with her and didn't think twice about it. Never once did it cross my mind
something might not be right.
Little did we know, that when we got this picture taken our little girl was hiding more than just
her “little girlness”. We thank god on a daily basis that our Ultrasound Tech paid such close
On May 9, 2009 I went for my level 2 ultrasound to get a closer look. I wasn't nervous at all.
Again, it never crossed my mind something might not be right. Our world came crashing down
that day.
Our daughter was diagnosed with Hypoplastic Left Heart Syndrome at 30 weeks gestation. We
were devastated but we didn't give up. We were thrilled to find out that the University of Michigan
was ranked 3rd in the nation for treating this CHD and was located a mere 2 hours from home.
Our daughter, Aly was born at U of M on June 30, 2009.
She scored 8 out of 9 on her APGAR tests and did very well on the days leading up to her first
surgery. Aly was born via C-Section so I was unable to see her until she was over 24 hours old.
It was 7 days before I got to hold her. And even when I did I wasn’t really “holding” her. I was
holding blankets and tubes and wires with a little tiny baby in the middle of it all.
This picture was taken just a few short hours before her first open heart surgery.
She had her Norwood procedure on July 6, 2009. She survived surgery and did really well until
they got back up to the Pediatric Cardiac ICU. She had a rough patch that evening of trying to
get stabilized but pulled through.
Underneath that heart shaped gauze is a yellow membrane that was covering her chest. We
could look through the membrane and actually see her heart.
8 days later, she went back into the OR for a shunt revision .The shunt that had been placed in
her tiny heart was narrowing at one end and had to be shortened. 14 days later, we brought our
baby girl for the very first time.
We struggled with feeding and gaining weight, as many heart babies do, but we made it to her
Hemi-Fontan procedure on December 4, 2009. Aly did unbelievably well and we were home 5
days later.
As of just last week, we have scheduled her Fontan surgery for March 16. While we are not
looking forward to handing over our baby girl again, we are looking forward to having all 3
surgeries behind us. We know that life is full of surprises and there may be more surgeries in her
future, but that is not for us to worry about. We are looking forward to living life as normally as
we can and appreciating every day for what it is. We are so proud of our little girl and can’t
wait to watch her grow! Follow us at http://www.alyjeansspecialheart.com/ to see what she is up to now!

Wednesday, March 16, 2011

Alexanders Story- Another HLHS warrior

                                     Told by Erika, Alexanders mommy.
My husband and I were so excited to find out we were expecting our first child. I was due November 15/2008. Everything was going great, no morning sickness, no weird cravings (although I did have 4 different types of ice cream in my freezer at any given time), the heart beat sounded great, nothing to indicate that anything was wrong. I saw my family Dr. first so she could refer me to an OBGyn, at that time she asked if I would like an ultrasound at 12 weeks. I said no everything should be good. So 12 weeks came and went and my appointments with the OBGyn, Dr. McMeekan-Down were going fine. She scheduled me for the routine 20 week ultrasound. The day that changed our lives forever and one that I will NEVER forget.

My husband, Ed, is a joker. While we were at the ultrasound, he asking all these silly questions like it only has 1 head and such. It was going fine, until she uttered the words I'm having trouble seeing the heart. We figured it was because she was fairly new, she had to get someone else to help her. So now there were two ladies staring at the machine and trying to get the baby to move so they could get a better look. Finally the more expierenced one said they wanted to take me to a different machine that had more technology that they could see more on it. Well they looked some more and this time the second lady went to go get the big radiologist that looks at all the ultrasounds after they are done. So now there are three of them standing around this machine trying to see what they can for a heart. I just laid there staring at Ed with tears rolling down my face. The silence was immense.

After much time they finally turned the lights back on and left us with the radiologist. He brought us a sheet of paper with a diagram of a heart on it, and proceeded to tell us that our baby had a heart problem. It is called Hypo-Plastic Left Heart Syndrome. We were told that I would have to go to a high risk OBGyn now and that there were no Dr.s where we are that can help the baby. I asked if it could be fixed before the birth and was told they only do that in the US. We were also told that there are no Dr.s where we live that can help the baby and I would need to deliver in a different city, about 2 1/2 hours from where we live. He also said that the surgery would be done in a different province about 10 hours from where we are. We left in a daze.

The first thing I did when I got home was google hypo-plstic left heart syndrome. I got as much information on it as I could before I saw my Dr. the next day. I didn't stay very long as there wasn't much she could or say. We put in a request to a high risk OBGyn, Dr. Cardoso. I anxiously waited for his office phone me at home. My first appointment with him was about 1 week after finding out. Because I was so far along already they needed to do all sorts of tests to see if there was anything else wrong with the baby. One of them being an amnio. This is where they stick a huge neddle in your stomach and pull out amniotic fluid. We had to wait for the results, to see if our baby had down syndrome, or other disorders that would not allow it to survive. I hated waiting.

The results came back normal. YAY!!! We carried on with the pregnancy, and met the pediatric cardiologist from Saskatoon. They do a clinc in regina, (where we live), the first and third Thursday of every month. Ed wa not able to come with me so my mom did. He did an Echo the best he could while I was pregnant. He went over our options, either get 3 surgeries done once the baby was born that would allow it to live, comapsionate care where we have the baby and do nothing or terminate. Well terminate and compassionate care were not even options inour mind for us. We would go with the surgeries.

The hardest thing for us to do was to still be excited about having a baby. We sometimes had to force ourselves to by baby stuff, like a stroller, carseat, even the crib I ordered was delivered 2 weeks before my due date. We tried to carry on with it as a normal pregnancy, but it was really hard. As it got closer to my due date, we had to take a drive up to Saskatoon where I was to be induced to pick a date and meet the Dr. there. She wanted me to go as far along as possible but still have time to induce me. They didn't want me going into labour on my own as we didn't live there and would have to go to our hospital first to see if we could make it to Saskatoon before the baby was born. We picked November 5 to be induced. The day after my father in law had his birthday and before my sister in law had hers.

We went out for supper on Nov. 2 for my father in law 60th birthday. Later that evening I went into labor. We still had to pack everything for our trip to Saskatoon/Edmonton and now were rushed. First we went to the hospital here to see how far along I was and we had plenty of time to get to Saskatoon. We came home packed called my sister on the way home so she could meet us there since she was house/dog sitting. We left the city around 12:30am and made it to Saskatoon by about 2:30am. We got to the hospital and they kept me for 4 hours then since I was dialated enough sent us away. Good thing there is a Ronald McDonald house in Saskatoon as that is where we were going to be staying. We went back around 1pm and again they only kept me for 4 hours. Finally at 11pm we went and I got to stay.

I was in labor for 44 hours before Alexander was born, November 4/2008 which happened to be my father in law 60th birthday!! I never got to hold him when he came out, he was to blue for that. I got to touch his little cheek and told him I love him, then he was gone. It would be 4 hours before we got to see him. He weighed 6lbs 11ozs and was 19.5 inches long.  Alexander was doing great for the first day. On the second night he quit breathing a few times so they had to put in a breathing tube.

We were in Saskatoon for a week before they air lifted Alexander to Edmonton. Ed and I thought about me going with him but decided it would be best if I went with Ed so he didn't have to drive alone, (it is about 5 hours to Edmonton from Saskatoon). It was a long drive, but once Alexander landed and got settled in th N.I.C.U. the nurse phoned us to let us know, which made the rest of the trip easier. Once we got there they told us that they had paralyzed him to take full control of his oxygen. It was the worst thing in the world, because he did not move, he didn't react when we tried to tickle his feet, nothing.

He was again in the N.I.C.U. for almost a week before he had his first open heart surgery. He was 13 days old. From there he was put in the P.I.C.U. He was so puffy and swollen, it did not look like him at all. Alexander was in the P.I.C.U. for only a week before being moved back to the N.I.C.U. from there things started moving a little faster. Once his breathing tube came out on November 25 we got to hold him for the first time ever. He was 3 weeks old. We would only be in Edmonton until the end of the week. That Saturday they air lifted him back to Saskatoon. We spent 2 more weeks there and then he was send by road ambulance to Regina.

Alexander's biggest problem was feeding. He did not know or have any desire to suck on a bottle. We had to try and feed him for 30 minutes from the bottle and the rest we gave to him through his feeding tube. It was hard and frustrating for all of us. We were at the hospital in Regina for only 2 weeks and then we got to bring him home for good. YAY!!! He was 8 weeks old. Funny enough it was on December 30, just in time for the New Year.

He still ahd the feeding tube and we were shown how to change it since this would need to be done once a month. We invited family over the first of February since we had his tube out and it would be a great chance to take some pictures without it in. We did this again on March first. I convinced my husband to let me try to feed him without his tube in for one feeding, (he was on a strict schedule for feedings, every 3 hours even through the night). Well he ate the whole thing in less than the 30 minutes we gave him. So I told Ed we were not putting that stupid tube back in. It was liberating. I fed him less at a time but more frequently, which helped him to gain weight and grow.

Alexander had regular Echos done, and in march we got the call to say his next surgery was going to be April 13/2009. It was hard to believe the time had come again so soon. We packed everything up and since they needed to do some tests before his surgery we had to be there for Thursday as Friday was Good Friday. Well we got there and then Monday morning came and his surgery was cancelled, it did not get done until Wednesday April 15. Everything went good. The next day though they were doing a routine chest x-ray and saw some fluid build up behind his heart, so they had to rush him back to the OR to have it removed. Thankfully they got it all and there were no more issues.

Alexander was doing so well after his second surgery he was sent home just 6 days after having the procedure done. We were so proud of him and yet worried the Dr.s were sending him home too soon. But things went great and he became stronger and healthier. You would never know anything was wrong with him. His only issue was walking, it took him forever to walk. he was 19 months before he started to walk by himself. When he was 16.5 months old he became a big brother. He has embraced this role greatly. He is the most helpful, caring, amazing big brother ever. Even if his little brother is almost the same size as him.

Alexander jus had his Heart Cath done on March 4/2011. Dr. K is a little concerned as his chest/lung pressure was 19 and the cut off they like to have it at is 18. Also his sugars were low at 2.5. Dr. K was amazing as usual and put some dye into Alexander's kidneys as he has always had high blood pressure and no one knows why. It has nothing to do with his heart. So Dr. K gave the results to a new Dr., Dr. Robinson, and he came to talk to us shortly after. It looks like Alexander is missing a big artery that is supposed to go to the kidney and has a few amsll ones instead. The kidney is getting enough blood, but it doesn't think it is. Therefore it is causing the high blood pressure. Right now Aelxander is on medication to treat the high blood pressure but Dr. Robinson wants to put him on meds to treat the kidney. Go to the source of the problem instead of the side effect.

Right now we are waiting to here from both Dr.s as Dr. K has conference with Edmonton about the cath results, and Dr. Robinson is waiting for results from boold work and a urine sample. I will let you know more when we find out. You can also check out his page at http://www.carepages.com/carepages/ourbabyboysheart.

Tuesday, March 8, 2011

Wyatt James- HLHS Warrior

On March 1,2010 Jillian and Lucas learned that their baby boy had a severe heart defect, Hypoplastic Left Heart Syndrome.Out of many different congenital heart defects, HLHS is the most severe. They were given the options of termination, compassion care, heart transplant, and a series of 3 surgeries to rewire his heart. Jillian and Lucas chose the surgeries.

Wyatt James Greeno was born July 13, 2010 via csection. He had his first surgery, the hybrid-norwood on July 16th. On July 23 the surgeons had to go back in to tighten his PA bands. After his surgery they discovered he had a large clot and was tested for clotting disorders. They found out Wyatt had the MTHFR gene. Because of his clotting it made his heart situation more complicated. Wyatt finally got to go home with his mommy and daddy on Aug.6th.

Wyatt continued to be monitored closely by a home health nurse. On Mondays he went to get his echos and check ups. He did have to be readmitted for his clots at times. On Decemeber 9th Wyatt went in for his heart cath. He got to go home from that on Decemeber 17th.

January 19, 2011 Wyatt went in for his 2 operation, the Hybrid Norwood Stage2. He came out of surgery and was doing very well. Things took a turn for the worse when a clot developed in Wyatts pulmonary artery. The drs tried very hard to prevent the clot by medicating him after surgery, much sooner than they would have liked. They tried to ballon and break the clot. When that wasnt successful they tried a medicine to bust the clot up. Things continued to cascade and Wyatt coded. He was put on the ECMO machine but his organs continued to fail. He passed away on January 24, 2011. Wyatt was only 6 months old.

To read more of his story you can check out his caringbridge page. http://www.caringbridge.org/visit/wyattgreeno/journal/10 His story above is shortened from this caringbridge page.

I never got meet Wyatt. I have never met his mother in person either. I was part of a pregnancy group with a bunch of mommys that were due in July. I kept up with Jillian and Wyatt. I prayed for them.

Wyatt is a warrior. He is a strong baby boy. Beautiful sweet chubby cheeks. A smile that just radiated so much happiness. Jillian and Lucas are amazing people. I know that Wyatt really did get the best parents ever. They gave him a chance at life and then fought for that life until the very end. They cherished him. He adored them. He always had a smile on his face, such a happy looking baby.

Wyatt was put here with us for such a very short time but he will be rememberd for a lifetime. It was an honor for me to get to be apart of his journey through his mommy.


Thursday, March 3, 2011


Thank you for taking time to come check out the blog! We hope to continue to help Wyatt spread his warmth through all of the generous donations we receive. We also want to take time to help Wyatt raise awareness.

This blog was created with the intent to spread awareness. To help teach others about congenital heart defects. Theres a broad spectrum of the defects, some minor and not life threatening. Then theres the very serious ones. Wyatt suffered from the severe, Hypoplastic Left Heart Syndrome.

Each posting, we will be showing you a child with a congenital heart defect. We will also tell you their story and provide you with a link to their story so you can find more. (If one is available that is)

So many, including myself, are uneducated. We all need to be aware of CHDs. 1 in 100 babies are born with them. We loose some of them to more severe cases everyday. We NEED awareness. There is not enough funding in research yet that number, 1 in 100, is huge.

We can be found on facebook, www.facebook.com/wyattswarmth.  You can follow us on twitter, wyattswarmth. And we are working on our own site daily. Thank you all for helping to spread Wyatts Warmth! Please feel free to spread this blog so we can educate others. In doing so we are helping to honor the angels who didnt get to stay with us. Every childs story deserves to be told.

Thank you!