Cassiana's Tender Heart

[tinkerbell76]

My sweet Cassiana is one out of every hundred babies that is born with Congenital Heart Defects.  She entered into this world on June 22, 2009. Cassiana was born with the following Congenital Heart Defects (CHD): double outlet right ventricle, unbalanced AV canal, large ASD, mitral atresia, and tricupsid valve regurgitation. She under went her first open-heart surgery at 4 days old.

                

She has an amazing fighting spirit and went home at 17 days old. To care for her at home we had to give her 4-5 meds twice a day and strict every 3 hour feedings. Cassiana could only be allowed to drink from the bottle for no more than 20 minutes and the rest of the feeding had to put down her NG tube.  Eating for Cassiana is like you or I running a marathon. It takes so much work for her and it burns alot of calories.  Cassiana again amazed the doctors and was taking all her feedings by bottle and didn't need her NG tube anymore

                  

Cassiana was almost a month old and she wasn't acting herself.  She started to vomit after her feedings. Then, she started to refuse feedings and was crying and could not be consoled.  Within hours she started to have grunted breathing. We knew something was wrong. A quick call to the on-call Cardiology fellow was made. She advised us to take her to the nearest hospital for evaluation. She did not feel comfortable with us making an over an hour drive with Cassiana in that condition. Our nearest hospital was 5 minutes away. The emergency room staff was not knowledgeable enough to know that there was something wrong with Cassiana. They made me feel silly for taking her in and sent us home telling us she just was colicky.  They made a huge error in judgement.  The next morning Cassiana had a fever and I called by to Cardiology and was told to rush her in.  Cassiana wasn't doing well!  Outwardly she showed no signs of infection but she had a terrible infection brewing inside of her.  Soon it became very apparent what was wrong. A pus filled pocket formed on her incision site and was quickly getting bigger and the area around it was becoming red and inflamed. She had developed a staph infection in her incision site and it had entered into her blood stream. This infection was very serious.  Cassiana no longer had the strength to take a bottle and she had to have the NG tube put back in.

                   

Cassiana stayed 13 days in the hospital and had a central line placed in her upper thigh called a Broviac. Antibiotics were given through the Broviac for 5 weeks. Our luck with the Broviac was not so good. Within 24 hours it clotted off and a declotting drug TPA was used to unclot it.  Several times heparin was used to unclot her line as well. Then, her line got a hole in it and a new Broviac had to be placed in the other leg.

                 

A week after the Broviac was pulled Cassiana started to have increased vomiting and her oxygen saturation's were dropping into the 60's (normal for her is 77).  Again, she was readmitted to the hospital to undergo testing and rehydration. Thank goodness it was a short 3 day stay.

                           

Feedings continued to be an issue. Cassiana was vomiting after almost every feeding. She just could not tolerate 27 K cal, 72 cc feedings every 3 hours.  Her doctors decided to try a pump at night for 10 hours. This meant that Cassiana had to have monitors on her at night and she had to stay at a 30 degree angle. She would need to sleep in her bouncy chair or propt up in her boppy.  During the day I had to feed her by NG over an hour to help her tolerate her feedings better. Unfortunately, none of it was helping.  To help with the feedings it was decided that Cassiana would need a G-tube placed.  The G-tube was to be placed on October 9th but on October 5th while seeing her pediatrician she has a screaming/thrashing episode and she was looking blue. He immediately called Cardiology and we were sent to the hospital again.  Cassiana had numerous episodes like that for 4 days. Many test were done one her: CT scan, bone scan, EKG, EEG, echo, chest x-ray, heart cath and many labs.

The heart cath shows that she has some narrowing in her shunt and she is getting restricted blood flow.  Cassiana will need another open-heart surgery this week. 

                   

Cassiana is only 15 weeks old and this is just the beginning of our journey...

Congenital Heart Defect Facts:

1 in every 100 babies is born with a CHD

This year, almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after.  In some cases, CHDs are not detected until adolescence or adulthood.  

 In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined; yet funding for pediatric cancer research is five times higher than funding for CHDs.

Of every dollar the government spends on medical funding, only a fraction of a penny goes toward congenital heart defect research.

 

 

 

[TJSMOM91804]

Oct. 10, 2009 at 4:35 PM

You & Cassiana will be in my prayers & my thoughts.  I understand the hell you are going through & if you need to talk, give me a holler.  My 5 yr old has had many medical problems since the night he was born & is living on borrowed time.  You need to stay very strong & know that you are doing everything that you can for her.  You are a great mom & your little Cassiana loves you more than you could even begin to imagine.  Keep me posted please.   HUGS & PRAYERS FOR YOU!!!!

[marigrimes]

Nov. 4, 2009 at 7:18 PM

Thank you for sending me your sight. I will let my husband read it as well. Good luck on your journey with your daughter. I know exactly what you are going thru. My prayers are with your daughter and family.