Charlotte's Journey: Heart Cath

Tuesday, January 11, 2011

Heart Cath

Look At this sweet little angel. Just looking at her, can you tell she has a heart defect? I think she looks like a "normal" new born, but we are told that time will be out enemy. You see, when a baby is in the womb, the heart is working but not like after a baby is born. There is a hole that is called a Ductus Arteriosus that lets blood flow back in from the aorta, and that Ductus Arteriosus will start closing off after the baby starts to breath. It could take a few days before it is completely closed. There is a medication called prostiglandines that the Dr's will give Charlotte to keep that duct open. If the port was to close, Charlotte would die, because her heart would pump de-oxygenated blood to her body and that is incompatible with life! There are side effects from this medication. Shallow breathing is the one they warn us about because if that happens she will have to have oxygen. So first things first, the prostiglandines are running and now we just sit and wait. Dr. Bradley is her Heart Surgeon and he tells us he wants to watch her and run a few test over the next few days and then he will decide when she needs surgery. Sometime during the night, Charlotte has been placed on oxygen because she isn't breathing deep and her monitor keeps going off. It's been 2 days and Charlotte is scheduled for a heart cath in the morning. I am scared to death, but I am also excited, because I get to hold her for the first time!!! Charlotte has arterial lines in her belly button so I am not allowed to hold her unless she has a major test or surgery the next day. the reason I am not allowed to hold her is because of those lines are moved, they could come out and Charlotte would bleed to death before they could get it stopped. So you can see why I am apprehensive about holding her. Lord willing, everything will be ok and holding my daughter will be the best feeling every! I have FINALLY gotten to hold my precious angel and it was such an emotional moment for me. I held her until it was time to go for the night. I tried to get Brian to hold her, but he said he would never take away that moment from me. Deep down we were both scared because of the chance of her not making it through the heart cath. We both have cried so much already and it has only been two days, I hate thinking of the tears that will fall during this journey.

Heart cath morning and we are up and at the hospital around 5:30 a.m. The PCICU's visiting hours are any time day and night, except 7 to 7 a.m. and p.m. That hour is for the nurses to make report during shift change, and parents are distractions, so we are not allowed in unless there is a procedure scheduled. We just sit beside Charlotte's bed and pray that God's Will be done. I can't help but cry and ask God to guide the hands of the Dr's and get her through this. Time flies during moments like this. Anesthesia is at the bed side asking questions, and honestly what can you answer besides "I don't think she is allergic to anything" at this point? Then they let us kiss her bye and they are gone. We have the most wonderful nurse Christine taking care of Charlotte today. Christine walks us to the waiting room and tells us she will personally come to update us as the procedure is done. There is a chance that the Dr can do diagnostic things while the cath is taking place and if that happens it could take longer that normal. We are told the cath may take 4 to 5 hours. Brian and I have been in the waiting room a few hours and Christine walks in and my heart drops to my stomach, she informs us that things are going well and that she is in the cath room with Charlotte and she will be back later for another update. Maybe an hour passes and all the parents that are in the PCICU with their babies are asked to leave the PCICU. When one of the babies comes from a procedure, all parents are asked to leave so the child can be stabilized and parents don't get in the way or see scary things. My heart drops again and in comes Christine. It hasn't been a total of about 2 1/2 hours and she tells us that the cath is over and Charlotte is in PCICU and we will get a call when we can visit, but the Dr will be in to talk to us shortly. Dr. Baker is the heart cath Dr. and he tells us all this overwhelming information and all I get is that he couldn't do anything diagnostically but the cath went well. Dr. Baker confirmed Charolotte's diagnosis, Ebsteins Anomaly with Pulmonary Atresia. Ebsteins Anomaly is a rare defect that causes abnormality in the tricuspid valve. This valve connects the right atrium to the right ventricle. Because of the abnormality, the valve sits lower in the heart, causing the valve to be leaky, because the leaflets are abnormal. Because of the position of the valve, the atrium is much larger than normal and the ventricle is much small than normal. The abnormal position of the valve causes part of the right ventricle to become functionally part of the right ventricle. Pulmonary Atresia is where there is no valve or opening for blood to flow through in the pulmonary artery to the lungs. Because the pulmonary valve does not form during pregnancy, the right ventricle which pumps blood through this valve, does not form normally and stays small. Pulmonary Atresia is a rare defect and develops during the first 8 weeks of pregnancy. So any questions?

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Heart Poem

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

THE CHOSEN MOTHERS BY ERMA BOMBECK

Most women become mothers by accident, some by choice, a few by social pressure, and a couple by habit. Did you ever wonder how mothes of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrog, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy." "Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you. "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps- "Selfishness? is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally. she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted, She will never consider a single step ordinary. I will permit her to see clearly the things I see.... ignorance, cruelty, prejudice... and allow her to rise above them. "She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."