Thursday, January 20, 2011

The Last 8 Months

     Time has really flown by!  When we came home in May, it seemed like a miracle that we were even home.  Home as a complete family was wonderful.  Getting to catch up with our girls and finding out about what we had missed over the last 30 days was very important to Brian and I.  I must admit that having Brian by my side the last 30 days have spoiled me!  I started thinking about having the girls home for the summer and having Charlotte to take care of, I started getting a little overwhelmed!  I honestly think I was afraid to be home alone with them all, but somehow with God's Grace, I have survived!  Charlotte has surprised us all with how well she is doing.  We get great check up's at the Cardiologist office and the Pediatrician's office.  I must admit that after being home and getting into a routine, things have worked out well.  As you can see my girls can find anything to entertain themselves with no matter how messy it is.  The girls have been playing in the rain and with chalk, making hand prints all over the drive way.  Charlotte and I stayed in the garage where it was safe AND dry!!!
 Charlotte at two months, FINALLY got to nurse for the first time, and she latched on like a champ!  I couldn't wait for her 8 weeks of portagen to be over, that stuff is brutal!  Portagen is the fat free milk that Charlotte had to drink because of the chylothorax, and boy did it make her sick.  Charlotte threw up at least twice a day drinking that stuff and it was scary at times! Charlotte at three months has accomplished a lot.  Charlotte has rolled over, laughed out loud, found her feet, and realized she has a voice.  Charlotte has the sweetest voice, she squeals and looks at me like "where did that come from?".  Charlotte at four months has eaten cereal and laughed out loud at somebody.  This cute little boy at church was hopping toward Charlotte, and Charlotte just giggled at him.  At five months we had to take Charlotte back to Charleston for a heart cath. This is Charlotte pre heart cath with her daddy.
     This was not a fun trip, we came home with a sick little girl!  Charlotte was discharged from the hospital the afternoon of the cath and we went back to the hotel and stayed the night, THANK GOD!  During the night Charlotte started throwing up and we had to go back to MUCS for tests and nothing was found.  We were told to just check with our Pediatrician the next day because Charlotte should be back to her old self.  Well we are at the Pediatrician's office and Dr. Donna comes in and tells me I have to go straight to Greenville Memorial Childrens Hospital because it looks like Charlotte has a bowel obstruction! 
     We stayed in the hospital 5 days.  This picture is the day after she was admitted.  That was the longest 5 days ever!  Charlotte would just lay in the crib lifeless.  She had several test, and being stuck for labs, and not being able to eat, it was rough!  I never left her side, I just prayed to God that he would help her like He had before.  Finally, she started showing signs of  life and hunger.  Once Charlotte started eating, I knew it wouldn't be long before we were home.  Charlotte has reached for Brian, and said "dada" for the first time, and you would have thought he was given a million dollars. Charlotte was Piglet for Halloween and the cutest little pig I have ever seen.
     At six months, Charlotte had an appointment with the High Risk Clinic and we got a good report.  Charlotte is on target with her age and she is cutting her first tooth!  Charlotte needs a little work exercising her stomach muscles so she can sit up by herself, but other than that she is great.  It seems like we have just gotten home from Greenville Memorial and here we are again!  Since the last hospital stay, things just haven't been the same with her.  Charlotte has been throwing up and VERY poopy diapers.  Brian and I decide after two weeks of this to take her to the emergency room and the Dr. decided to admit her for observation.  This time we are here for three days.  The Dr thinks Charlotte may have a milk protein allergy and they are testing her for that.  Luckily no milk protein allergy, maybe just a two week virus, they really are not sure.  All I know is Charlotte seems better and I want to get out of here!!!  Just a few weeks after the High Risk Clinic appointment, Charlotte has started sitting up!  At seven months, Charlotte has cut her second bottom tooth, plays patty cake, gives kisses, and waves her arms high above her head like she is praising God!  Charlotte has come a long way and it is all because of answered prayers, THANK YOU LORD!  This is Charlotte's first Christmas and may I say I think she is the beautifulest little girl I have ever seen!
Charlotte at eight months, well she weighs 18#13 ozs and is 27 3/4 inches long.   We had a cardiology appointment just a few weeks ago and it was a great appointment.  Charlotte's oxygen level is still 84-85 and her shunt is still helping out.  Dr. Horne couldn't find her shunt on the Echo, but he assured us that he could hear it.  All we are doing at this point is waiting and that is the hard part.  We are praying that as she grows, her heart grows too, and that her ventricle will eventually be able to do the work it is suppose to do.  That way she isn't dependant on the shunt and possible have a some what "normal" functioning heart. 

Surprise... We are home!

The only great-grandparent's Charlotte have are my mother's parents, Ralph and Margaret.  They have been unable to visit us in Charleston because they don't travel well.  This ordeal has been very hard for my family, especially for my grandparents because we have been so far away, and because they can't visit.  With that said, Brian and I decided on the way home to surprise my grandparents, not to mention we have another load of breast milk we need to store in their deep freezer!  So not wanting to spoil the surprise we didn't tell anyone we were coming home.  We pull up in the yard and believe it or not Ralph and Margaret didn't even know we were there.  Ralph is in the back yard watering the tomatoes and we drove right passed him to get to the building where the deep freezer is kept, and he didn't even look up!  My grandfather doesn't have the best eye sight so it's not surprising to me that he didn't see us.  I get Charlotte out of the truck and walk up to him and tell him there is someone wanting to meet her great grandfather.  I wish I had had the video camera rolling to catch his expressions.  I think I scared him at first until he realized it was me, then when he realized I was holding Charlotte, he started to cry.  We walk in the house and Margaret thinks it is Ralph, so when I walk in the living room, she starts to cry too.  It is emotional to see them cry, but knowing they have been praying for Charlotte, this is a miracle for them to see her.  We leave Ralph and Margaret's and head home.  We pass by my in-laws where our older girls are staying and decide to stop and get them.  They have no idea we are home and it's late so boy were they surprised when we knocked on the door.  Maggie and Anna were already asleep, but I had to wake them up!  I was so excited to see them I couldn't leave them asleep.  When they finally woke up, realizing it was me waking them, they screamed "MOMMY, you are home!"  It was such a wonderful moment, hugging and crying and then they realized Charlotte was home too!  It was a beautiful moment to have the five of us together, now if we could just get the other two we would be complete.
     After having a wonderful first night at home, we head back to my grandparents for lunch because my mom is bringing Emma and Lily to visit.  We get there before my mom does, so we are hiding out in the kitchen when she gets in and seated.  I wait a few minutes and walk in the living room with Charlotte and mom screams out, "O Lord, when did y'all get here?"  But out of all this, the best thing was seeing my girls!  Having all four of them hanging all over me, hugging, kissing, laughing, and just being together, now that is an answered prayer!  

Wednesday, January 19, 2011


Thank you Lord, we have made it through the first 24 hours and it hasn't been easy.  Brian and I walk in PCICU early this morning hoping that we get good news about Charlotte's first night post op, and the nurse informs us that she made it, but there were a few bumps in the road.  I am still shocked at all the "stuff" attached to Charlotte.  It almost doesn't seem possible that all this could be attached and running, but it is.  Day Two: post op and things are about the same.  The Dr's are weaning Charlotte off the vent and some of her medications, because she seems to be doing well.   We have a round of visitors from the church and THANK YOU LORD for sending them.  I feel so isolated because we don't know anybody down here and when family comes to visit, well it is just wonderful. 
Day Three: I am walking toward Charlotte's crib and I can see her face!  Thank you Lord for another answered pray!  Charlotte is off the vent and doing rather well.  Charlotte's nurse told that when the Respiratory Therapist went to pull the tube, Charlotte pulled it before the RT could grab it!  That's my little fighter, ready to get the show on the road!  So far Charlotte is off the dopamine and lasix, and will be off the heparin and morphine this evening!  The nurse started back the TPN, which is food, so that is a good sign.  Brian and I call it Mt. Dew, it looks just like it.  If I didn't know any better, I would think that somebody just poured a bottle of Mt. Dew in the bag and called it TPN.  So now when we get a report from the nurses, they refere to it as Mt. Dew.  By the evening visit, The patch is off Charlotte's forehead (this measured blood flow to her brain), and she is not wearing her oxygen anymore!  The only thing on Charlotte's beautiful face is a very small NG tube, which is used for milk.  The Dr's have pulled the arterial lines that were in Charlotte's belly button too!  Charlotte has come a long way in three days and it is all because of  God answering prayers.
Day Four:  Dr. Graham is waiting at the crib as we walk up and tells us that Charlotte is the star patient in the unit!  We love Dr. Graham, he has been wonderful keeping us informed about everything and what to expect.  Dr. Graham tells Brian and I that during the night Charlotte had to be put on room air.  It seems that when she sleeps, she sleeps deep and doesn't breath as deep as they like, so if she keeps this up, nasal cannula!  Charlotte is doing well with feeds, so every time they feed her they increase the volume.  Charlotte has lines in her femoral arteries that have been pulled this evening!  Charlotte also had her lipids, TPN and a flush taken away tonight.  That is a wonderful surprise and a step closer to 7C!  When we come back for our night visit, Charlotte has been moved.  We were in the far back corner of PCICU, but because Charlotte is getting closer to moving to 7C, the nurses decided to move her to bed 3.  We really don't like being moved because our little corner was nice and quiet, now we are right in the way of everything. 
Day Five:  We have more visitors from church today and like I said earlier, family is wonderful!  Charlotte looks so wonderful, and we hear talk of moving us to 7C!  I sure hope it's soon, because that means closer to home and we sure can't wait to get home!  FINALLY, we get to hold Charlotte and we can't stop smiling!  This is the second time I have gotten to hold Charlotte since she's been born and the first time Brian has gotten to hold her.  Can I say that it is wonderful to have her in our arms!

Day Six:  Usually Brian and I are with Charlotte by 10, but seeing as we were able to hold her last night we stayed pretty late making up for lost time.  I am getting ready down the hall at the Ronald McDonald house and someone is beating on the bathroom door.  It's Brian screaming at me that he got a call, they are moving Charlotte to 7C!  Brian and I are rushing around getting ready and finally make it to the hospital.  As we walk up to the unit, the door opens and it's Charlotte rolling out!!!  I can't tell you the feeling of joy I feel at this point, as well as sadness.   I am overwhelmed with joy because we are moving up, or should I say down?  We are moving to the step down unit and it is wonderful to know that Charlotte has made it this far in such a short time.  I am sad because we are leaving behind wonderful Doctors, nurses, techs, and secretaries that have become our family.  Brian and I didn't even get to say bye before Charlotte left, but we will come back to visit before we leave, I am sure!  Walking the hall to 7C, Brian and I cried tears of joy the whole way.  God has been SOOO good to us and He didn't have to be.  Thank you Lord!
Day Seven:  I am tired!!!  Beep, beep, beep, beep..... boy it takes a toll.  I must admit that getting to sleep in piece at the Ronald McDonald house was nice, but sleeping with my baby is even more wonderful!  I'm gonna have to get use to the beeping noise.  I will do anything for my Angel.  Charlotte gets her first bottle this morning, Portagen, yuk!   Charlotte has to drink a fat free formula for 6 weeks because she has a chylothorax, and because of the chylothorax, she still has her chest tube! 
Day Eight:  Today is a rough day for me.  Brian is going home for a while today because our oldest daughter has a piano recital tonight, and because I have so much breast milk stored, there isn't any more room in the fridge for any more!  Brian has been here with me and Charlotte the whole time we have been here and that is because Robbins Brick has been so good to him.  Brian's boss told him to stay as long as he needed to, now how many employers would say that to an employee?  I want to go home, but I feel I need to stay here with Charlotte.  Charlotte is in a room by herself and if I am not here to care for her, she is left alone because the nursing staff has other patients to look after.  I can't stand the thought of her being alone, so I am staying.  Maggie doesn't know that Brian is coming home, so I am sure it will be a surprise!  Charlotte's feeds are going great!  If she keeps this up, she gets rid of the NG tube and just bottle feed!  I get a call tonight around 9 p.m., Maggie did great at the recital, and Brian said that it was a tearful reunion!  Everyone is all packed and they are all heading this way tonight, my mom and Hayle are coming too!  I can't wait to see the tribe!  The girls will get to spend some time with Charlotte and that is exciting!
Day Nine:  The mob got here around 12:30 last night and they are driving Brian crazy to get here!  Charlotte has to start the day off in ultrasound because she still doesn't have a pulse in her right lower leg from the heart cath.  We were told that the possibility of that happening was great because of swelling, well the swelling is gone and still no pulse!  The Dr. tells us that Charlotte has a clot in her femoral artery and that will always be there.  The Dr. has started Charlotte on a new medication to help with her chest tube drainage.  Hopefully she will be able to get that tube out in a few days!  Here are a few pics of sisters Anna, Maggie and Lily holding Charlotte for the first time!  Emma was sickly today, so she wasn't able to hold Charlotte:-(.  My girls had to head back home today, and boy am I sad!  My mom decided it was best if they headed home a little earlier than planned because of Emma being sick.  None of us want Charlotte getting sick or any body else for that matter.  It was just as hard to watch my girls leave today as it was a few weeks ago, but I know we are heading home soon because I can see the light at the end of the tunnel!

Day Ten:  Charlotte has taken to the bottle pretty well, she started drank a whole bottle this morning.  Just 7 more bottles to go and they will pull the NG tube!  Still to much fluid draining to pull the chest tube, so I am praying that the drainage will stop.  Now that Charlotte is taking bottles, that tube is the only reason we are till here!  The NG tube is gone, Thank the Lord!
Day Eleven:  Brian tried feeding Charlotte a bottle today, boy that was a sight!  I think Brian was afraid he was gonna drop her or something and with pleading eyes, I rescued them both!
Day Twelve:  Brian is heading home again today, but this time it is for the night!  I am freaking out because I am going be hear by myself and I am not liking that idea to well.  BUT he is going home for a good reason, Anna is graduating from kindergarten and he doesn't want to miss it!  I am really hating that I am missing it, but again, I don't feel comfortable leaving Charlotte here alone.  I guess as a mother, there are times when you have to weigh the choices you are given and deal with the situation as you see fit.  Not that I like the choices I have been given or the choices that I have to make, but I am THANKFUL that I have this choice to make.  I realize that I could have gone home a few weeks ago empty handed, so you see why I feel thankful?
Day Thirteen:  I sure wish that there was a way to know when your day is going to be "one of those days"!  I should have know it would be a crazy day because I was alone!  First thing this morning, Charlotte throws up formula every where!  I am freaking out, thinking that something is wrong, but the nurses don't seem bothered by it at all.  THEN, during rounds this morning, the Dr is telling me that your still draining so the tube is in for at least a few more days.  During the conversation, the PA is checking the tube and informs the Dr that the tube is out!!!!!  OMG, what happened?  How did the tube come out?  Things are a little fast pace right at the moment and I hear the PA say that the stitch is out and the tube has slipped out some, so it has to come out!  I have to get out of the room quick, I am crying my eyes out because I am scared and worried and I don't want to get in the way of the team caring for Charlotte.  One of the PA's comes out to console me and to tell me everything is ok.  It seems Charlotte had something to do with the tube coming out!!!  Charlotte must have kicked it loose sometime during the night, and because it has slipped out some, it has to come out to prevent the risk of infection.  Charlotte is cleaned up and she gets an x-ray and EEG so the Dr's have something to compare when Charlotte has another X-ray in the morning.  Cathy is Dr. Bradley's PA, she tells me not to be worried, that this was Charlotte's way of telling them she was ready for the chest tube to come out!  All we have to do is watch her and get another X-ray and make sure fluid isn't collecting in her chest.  Later in the day I get to take Charlotte for a stroll to PCICU.  It was nice to visit for a few minutes with some of the nurses that had taken care of Charlotte and to tell them "THANK YOU"  for all that they did for her.  Brian is on his way back and when he walks through the walk way he sees me and Charlotte waiting on him.  If you could have seen the look on his face, his smile could have brightened the whole world!!!
Day Fourteen:  I was hoping to go home this afternoon, but Dr. Bradley wants us to wait another day.  Charlotte needs another X-ray and EEG before we can leave, and she seems fine after yesterday's ordeal, so we are waiting til morning for the X-ray and EEG.  I have joked with our nurses on 7C about stealing the monitor that measures the heart rate and oxygen level.   I am glad that we are so close to going home, but I am nervous about going home with Charlotte.  I have become dependant on that machine to tell me Charlotte is good, when I need to be confident that I can tell if something is wrong.  Lord, give me the knowledge that I need to take care of my precious Angel!  Hoping that we are going home soon, Brian decided to vacate the Ronald McDonald house.  We have spent today taking turns doing laundry, cleaning, and packing up everything, so when we get the green light we can head home!!!
Day Fifteen:     We start the morning out with X-ray and EEG.  Brian is tagging along so I can get things packed up, just in case!  We are praying that everything looks good!  Brian and Charlotte are back and now we wait....and wait.....and wait.....and wait.....and wait.  We have to get A LOT of medications filled before we can go home, so Brian is off to the pharmacy to get the ball rolling.  I get everything packed in the room, and Charlotte all dressed and ready to go home.  Finally around lunch our nurse Brenna comes to tell us the good news, WE ARE GOING HOME!!!!!!
I want to Praise the LORD for allowing me the honor of having a daughter named Charlotte Raye.  If it had not been for the Grace of God, she would not be here and I just want to thank HIM for all that HE has done for me!

Saturday, January 15, 2011


Lord give me strength!  I am an emotional wreck!  Watching my children leave and not knowing when we are going to see them again is horrible.  It felt like my heart was being ripped out of my chest!  Not to mention all the emotions that I have about surgery Tuesday.  Charlotte was scheduled for first case Tuesday morning, but she has been bumped to second case!  Charlotte has a partially collapsed lung and has to go back on the vent to get it up.  I hate that, but if her lung doesn't inflate, they will postpone her surgery.  I have to admit that I have prayed more since Charlotte has been born than I have probably my whole life!  I pray God gives me piece and assurance.  I have to trust in HIM and realize that HE is in control and HIS WILL will be done! 

Brian and I spend as much time with Charlotte as possible getting ready for the big day.  We usually stay with her all morning, leave for lunch and back til supper time.  After supper we stay til 11 and in for the night, but tonight will be different.  Brian and I decide to leave for supper and then go to bed to try and get some sleep, so we can get back to the hospital early in the morning.  Honestly, who can sleep when something so critical is looming around?  It's all I can do to sleep now, much less with something so critical added to things.  Charlotte's surgery isn't scheduled til around lunch so we get to spend the morning with her.  Dr. Bradley is in surgery this morning, so when he gets about finished, the nurses will start the pre op.  My stomach is in my throat all morning, dreading the surgery, but it has to be done.  I was hoping to get to hold Charlotte this morning, but with her on the vent, I can't.  That's pretty upsetting, so all I've done this morning is cry and lay my face next to hers and kiss her.  Somewhere around 10, Dr. Forbus comes over and tells us that Charlotte's surgery has been postponed because Dr. Bradley is running behind in surgery, and he wants to wait til morning.  A sigh of relief, but Lord I have to live through this all over again!  It's funny how things work out though, a baby was flown in needing emergency surgery this afternoon.  If Dr. Bradley had been doing Charlotte's surgery, that baby may not have lived!  Now that's the Lord looking out for his own!  Brian and I spend all day with Charlotte and when we left at 7p.m. we decided to eat supper and go to bed for a few hours.  Brian and I are back at the hospital at 4 a.m and Papa Jack is sitting in the hall waiting on us.  We all get to sit with Charlotte for a bit, but then Papa Jack decides to go to the waiting room, he kisses her bye.  I feel better about the surgery this morning, and I know it's because the Lord has given me piece about it.  Don't get me wrong, I'm still crying, but I know the Lord is in control!  Time is flying, it's 6:30 a.m. and anesthesia is asking us question and then they are ready to roll.  Brian and I kiss Charlotte one last time and head to the PCICU waiting room.  We get a message around 10:30 that the surgery has started and that so far so good.  Another page comes and Charlotte is on the heart, lung, bypass machine.  Another page comes and Charlotte is off the bypass machine and will be heading to PCICU shortly.  O MY LORD, THANK YOU FOR SEEING CHARLOTTE THROUGH SURGERY!!!!  I feel a ton lighter, maybe because the elephant that was sitting on my chest just got up!  Dr. Bradley comes to talk to us, and he is pleased with surgery and now we wait 48 hours to make sure Charlotte is out of the woods!  I was so glad to see my little angel laying in her crib, but my goodness, she is covered in "stuff".  There is a monitor stuck to Charlotte's forehead to measure blood flow to the brain, she's on the vent, she has a NG tube, chest tube, pacing wires, a RA line, lines in her belly button, artery lines in each groin, a monitor on her back to measure blood flow to her kidney's, a probe up her butt to measure temperature, a urine catheter, a IV in her left hand, and a little red light attached to her finger to measure heart rate.  Looking at Charlotte, all I can do is pray that the Lord is merciful, and that Charlotte makes it through the next 48 hours, and recovers quickly. 

Thursday, January 13, 2011

Mother's Day Weekend

  Hello my sweet girls!  It's saturday afternoon and Harold and Sophie have brought the older girls to Charleston to visit with us and meet their baby sister for the first time.  O my Lord this is such a wonderful surprise for Brian and I because we have been in Charleston since April 29th.  I miss my girls so much but it's a bitter sweet visit, the girls are not allowed in the PCICU.  I want to spend as much time as I can with them, because I don't know how long it will be before the next visit.  We have spoken to the surgeon and gotten all the information about the surgery and when it's scheduled.  From what I can gather, Dr. Bradley will insert a BT shunt from the aorta to the pulmonary artery, and open the pulmonary valve with a patch.  We are scheduled for surgery May 11th @ 8:00 A.m.  Christine is our nurse again tonight, and she tells us if everything is quiet, the girls can visit!  We get to the hospital around 10 p.m. amd the girls get to meet their sister for the first time.  This is a moment that will live in my heart forever!  For all of us to be together as a family for the first time is AWSOME! Thank you Lord!

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?

Friday, January 7, 2011

The Beginning

     This is my Angel from heaven, Charlotte Raye.  She was born May 3, 2010 at MUSC Charleston because she has a heart defect.  Charlotte is 8 months old and one of five girls that the Lord has blessed me and my husband Brian with. 
    We went for our level 2 ultrasound because I was 36 and considered "old".  We met with the Genetics Counselor, and after answering all her questions we decided that we didn't want any tests.  The Lord was in control with this pregnancy and no matter what our odds were, we would take what the Lord gives us.  There I laid on the exam table watching my little Angel float around,  not a worry one. The ultrasound tech ask if we would like to know the sex of our baby.  I wanted it to be a surprise, but my husband just HAD to know.  Having 4 girls at home already, Brian needed to know what the future held for us.  Finally I give in to his wishes and the tech tells us we are having another girl!  We were happy with having another girl, we really didn't care what we were having when it came down to it, just as long as she was healthy!  Honestly, isn't that every parents wish, to have a healthy baby!  Well, as we are discussing what our house hold is going to be like with all these girls in it, the tech asked to be excused and shortly came back with another tech.  I had a sinking feeling in the pit of my stomach, why was that other tech here?  I really don't remember the techs talking directly to my husband or me, just to each other in this really low voice.  After about 2 or 3 minutes, they left the room and in comes the office manager who is the really the most experienced tech in the office.  I looked at my husband and said somethings wrong!  The office manager introduced herself and proceeded to tell us why she had been called in the room.  Apparently the first two techs were having a hard time finding the right side of Charlotte's heart. After about "eternity" the tech looks at us and tells us that the heart is formed, but it doesn't look like there is proper blood flow and that the right ventricle is VERY small.  Also, that Charlotte's umbilical cord has only two arteries instead of three like normal.  Our world had stopped spinning and we were hanging on for dear life.  The office manager left the room to find the Dr. and they both came back to talk to us and inform us of what they thought was Charlotte's diagnosis.  I broke down, my husband broke down, not because we are having a baby with a birth defect, but mostly because of the unknown of what was going to come.  I remember telling my husband that the Lord would not give us more than we could handle, that He is in control and we will be fine with what ever happens.  We had to meet the Genetics Counselor again and after everything she asked and we answered, we decided to go home and pray!  after about a week of praying and talking to the Genetics Counselor because we had more questions, we decided it was best to have an amniocentesis.  According to the counselor, if Charlotte had Downs, the surgeons would have to postpone surgery.  If Charlotte had anything that wasn't compatible to life, well I think you know the answer, they wouldn't do anything!  So we had the amnio, and we waited three long days to get the fast results.  I was home with my girls when the phone rings, and the counselor gave me the best news I had ever heard.....the quick test was normal! Thank you God for answered prayers.  With good news from the amnio, I was scheduled appointments, one week at the OB office and one week at Maternal Fetal Medicine.  I felt like I lived at the Dr. office, but I am thankful that everyone was looking out for me and ESPECIALLY Charlotte. 

     We were introduced to a wonderful Pediatric Cardiologist, Dr. Benjamin Horne.  He made a wonderful impression the first time we met.  After we sat in the office and he explained to us that Charlotte has Ebstein's Anomaly and it looks like Pulmonary Stenosis, maybe Atresia, and explained to us the treatment and possible surgeries,  he asked if he could pray for us!  Needless to say I was Thankful that we were being taken care of by a wonderful Dr., but also a Dr. that believes in the Lord!  So at this point, Dr. Horne just monitored me and kept assuring me that everything would be fine.  The plan was to watch how Charlotte's heart developed and maybe deliver at Greenville Memorial.  Delivering at Greenville Memorial was close for Dr. Horne to monitor Charlotte, that way if anything happened he would be there.  About 6 weeks to go, Dr. Horne decides to send me to Charleston for a cardiac consult with all the Dr's there.  It seemed like a set back to me, but Dr. Horne assured me that he felt that would be best for Charlotte.  If the Dr's in Charleston saw the same things on scans that he was seeing, I most likely would deliver in Charleston.  That way if she needed surgery right away we would be there and if she didn't we would still be there for when surgery did happen.  It's March 31st and off to Charleston we go and spend a whole day with Dr's at MUSC and meeting a new OB Dr.  It was overwhelming, listening to everything the Cardiac Dr's were telling us.  Charlotte would be born and be observed and tested for a few days to determine what things would have to be done.  We were given a tour of the Pediatric Cardiac Intensive Care Unit.  My heart was breaking to see all the babies lying there, just like my sweet Angel would be in a few weeks.  I hated the thought of being in Charleston, but glad to know that there was somewhere like that that could take care of my baby.
     It seemed like we had just gotten home from our Charleston trip when the last week of April everything happened.  I went to my OB appointment on wed, and had dilated to 3cm and 80% thinned.  Thursday, I went to MFM and Dr. V decided it's to risky for me to stay home.  With Charlotte being my 5th child, Dr. V was worried I would go into labor, so he recommended that we head on to Charleston.  We left for Charleston on Friday morning and met with the OB Dr. in Charleston and nothing had changed, sheww!  So now we are scheduled for induction on Monday, May 3rd.  I don't think I have ever walked as much as we did that weekend in Charleston.  I was determined to go into labor on my own, but no luck.  We registered at the hospital Monday morning and up to L&D for a life changing event.  We had a WONDERFUL nurse named Lauren who took very good care of me.  Lauren kept us informed of all that was going on and when the time came for Charlotte to be born, Lauren took control of a very busy room.  I was suppose to deliver in the OR because of the things that needed to be done to Charlotte, but I labored really quick.  My water was broken at 12:30 and Charlotte was born at 2:03 p.m.!  As fast as things were going, there was no time to move me to the OR, so Lauren made the call to the Dr on call and it was decided to deliver in the room.  My room filled up with so many Dr's and residents in training there was hardly any standing room.  I was told that Charlotte probably wouldn't cry out like my other girls did, but just as she entered into this world, she cried!  Charlotte had the sweetest cry I had ever heard.  Just as soon as I heard it and looked at her for the first time, she was whisk away!  I wanted to hold her, and cuddle her, and let her know that I loved her more than anything, but she was across the hall in the OR having umbilical lines inserted.  Lauren told us it wouldn't be long and we would be able to see Charlotte for a brief moment before she was transferred to PCICU.  The door opens and in rolls this incubator all covered up and the nurse rolled the cover back and there she laid, CHARLOTTE RAYE COOPER.

    Charlotte looked so fragile and tiny, and all I could do was touch her through a little round window.  My husband touched her and we told her we loved her and she was gone.  I don't think I have ever cried as much as I did the moment I laid eyes on her, and when she rolled away.  I couldn't get out of that unit fast enough to the postpartum floor.  Brian and I had to wait til it was ok for us to visit the PCICU.  The nurses and Dr's needed to evaluate Charlotte and hook her up to IV's before we could visit with her.  Brian and I stayed with her as long as we could every day, just sitting beside her bed looking at what a Blessing the Lord had given to us!  We would smile and laugh and cry, all the emotions that we were overwhelmed with.  Smile and laugh because we knew we had been blessed, but cry because we know this is going to be a very long road to travel!