Cardiology Check up

Today we took Charlotte to see Dr. Horne for a check up and we got a pretty good report.  Looking at her Echo, things still look about the same and believe it or not, we can still see the shunt!  Dr, Horne said that it seems the shunt is doing a very small amount of work, but he feels that her heart is doing most of the work.  Charlotte was scheduled for surgery this past January, but Dr. Horne felt like she needed to wait and see how her heart functioned on its own.  Usually in this wait and see game, the clocks ticking speeds up quickly as each day passes, but Dr. Horne said that in Charlotte's case, each day that passes, that ticking slows down.  The longer Charlotte goes without surgery, the better for her to have a two ventricle repair!!!  The plan at this point is to schedule a heart cath for March/April and it will be a diagnostic cath because Dr. Horne wants the shunt and the ASD closed off to see heart pressures and how the heart functions.  If all goes well, then possibly close them off, if things go bad, leave them open and probably schedule surgery for the summer of 2013, as long as she continues to do as she has these last 19 months.  Lord I pray for a good report and good results during this heart cath!!!  I pray for no surgery and I pray that this heart cath is NOTHING like the last one!!    

"Witch"

For months I have asked MANY moms that have nursed babies how to wean and I have gotten lots of advise, but nothing never worked for Charlotte.  I never intended to nurse her this long, but for some reason Charlotte's pediatrician recommended that I nurse her as long as I could and I have ended up with a monster!!!  Every waking moment, Charlotte asks me for "witch".  I am sure you are wondering how it got the name "Witch", well let me tell ya.  When Charlotte was old enough to point and poke my breasts and cry for milk, I would ask her if she wanted "nene".  For a while, that is what it was called, but as she nursed, she would cry after nursing one side because she wanted to switch sides.  I would ask, "you want to switch sides"? and she would shake her head and say "peeze", so I would switch sides.  Eventually, she just started asking for "witch" and it was so cute.  Charlotte would walk up to me and rub my shirt and smell my shirt and smile that sweet smile of hers and "witch, witch, peeze mama".  I would pull her up to my lap and she would lay herself down in my lap while I prepared to nurse her.  How could I refuse?  I have had women tell me that because she was old enough to ask for it, she didn't need it anymore.  I wanted to give her all the "witch" she wanted because I know it's good for her, but boy, 18 months is a long time. and I was ready to try weaning.  So I started taking the morning and afternoon "witch" away so that she only got it at bedtime.  Boy did you know when it was bed time.  She would get all giddy and sweet and start yelling "WITCH", and run through the house looking for me.  I had been to a meeting Monday night and when I walked in the garage, I was greeted at the door by Charlotte and my husband and she was the sweetest baby ever.  So happy to see me, but more happy I was home for "Witch"!  I let her nurse her self to sleep and she had this look of satisfaction and peace on her beautiful face.  I don't know what has happened since Monday night, but Charlotte hasn't ask me for "Witch" the first time!!!  Tuesday night, Charlotte asked for milk at bed time, so I gave her a cup of milk and the rest is history!  Today is Friday and let's just say I am a little sad :(  I can't believe just that easily she has decided to give up "Witch"!  I wanted this to come so bad for the last few months, but now that it has happened, I am sad.  My baby is growing up!  Her first big decision to wean herself, and she had done a fine job.  I give her credit,,,, she has walked up to me and rubbed my shirt and smelled my shirt, but not once has she asked me for "witch", and I am so proud of her!!!     

18 Months

These last three months have really been a blur.  When I look back at the blog and I see how Charlotte has grown, it makes me HAPPY:)  Charlotte is getting to be a big girl and she is building up a vocabulary!!!  There really isn't anything she can's say.  I have a neice Hayle, well here lately Charlotte has been walking around the house saying,"Ayle -Boo".  If you decide to listen to this short video, scroll down to the very bottom of the page and pause the play list listed on the right side.  You may be able to click it quickly and hear it without pausing??

Charlotte is a smart little thing too... you can ask her where her nose, eyes, ears, arms, fingers, toes, mouth, teeth, and tongue are and she will point to it and say the name.  I need to make a video of Charlotte to show you how full of life she is.  Charlotte can hear Brian pull up from work and she starts saying "Da-Da" and when he walks in she dances and does the two step til she gets to him.  It is the sweetest thing to see.  When the girls come home from school, after snack time, they lay in the floor to read and Charlotte takes full advantage of floor time with them:)  She will walk up to one of them and kicks her leg over and sit on their stomach or back.  Then she  bounces up and down til whom ever she is sitting on begs her to get off.  I usually have to pull her off because she isn't very cooperative:)  I love to see all my girls play and have a good time.  I thank the Lord every day that He has given us this opportunity!!!

Charlotte had her 18 month check up this past Friday, and let me say it wasn't a good visit.  We get synages again this year for RSV and Charlotte got her first round of shots and a flu shot, OOUCH:(  Synages will be 2 shots every month for 6 months, this makes for a sad little girl.  But hey I am all for it if it keeps her healthy!!!  Last winter, Charlotte was hospitalized twice and I sure don't want to do through that again this year. 

Halloween was fun this year.  Our church always has a festival with trunk or treats, hay rides, face painting, food, and cake walks.  The children love it because they get to play with all of their friends and have a fun time.  The girls got to dress up and I wish that I had taken pictures of all of them, they were so cute.  Charlotte was a bumble bee, Lily and Emma were cats, Anna was a hippy chick, and Maggie was a bride (really wedding dress). 

Time flies

Wow, where has this month gone?  It doesn't seem like it is September.  I close my eyes and see the summer flash before my eyes.  August was such a busy month for our family.  We have had two weeks of Camp Meeting, 3 birthdays, Pediatrician appointments, Cardiology appointment, Immunizations appointment, dental appointment, and to top it off..........school.  At the beginning of summer, I had wondered how I was going to make it at home with the 5 of them.  Now that school has started back, I find myself wondering how I make it without having all 5 of them here.  I really miss my girls and I know Lily and Charlotte miss them.  Every morning Lily comes straight to me asking, "where's Emma, where's Maggie and Anna, I go to school today mama?"  I think Charlotte likes them being gone, she has the house and all the toys to herself.  Poor Charlotte, when Anna is home, Anna is constantly trying to hold her and carry her around the house.  Charlotte has learned the words no-no and shakes her hands like she is shewing her away trying to get the point across that she doesn't want Anna to hold or carry her.  Charlotte misses Emma..... Emma is the only one that just plays with her, and not aggravate her and Charlotte misses that.  As soon as Emma walks in the house, Charlotte follows Emma around til she sits in the floor and Charlotte hugs on her and pats her back.  It is the sweetest to watch.  Then there is Maggie.... she tries to play little mama to Charlotte.  When Charlotte gets enough of Maggie, Charlotte shews her away and it makes Maggie so mad:)  As far as birthdays, Maggie celebrated her 10th on the 7th, Emma celebrated her 5th on the 16th, and Brian celebrated on the 17th.

Cardiology appointment went well, Thank you Lord!!!  Dr. Horne said that he could hear the shunt, that it was getting louder due the shunt getting smaller and that we would go for a heat cath sometime in the spring or summer.  I was about to scream out loud because I get it in my head before the appointment that we're gonna get bad news.  I always get stressed out and worry so much just before the appointment and then we get there and nothing really to talk about because nothing has changed.....  Vicious cycle, vicious cycle. 

15 month check up and Charlotte is in the 75th percentile of weight and height and 95 percentile for head size.  I wasn't to happy about her O2 level,....... 70's.  Just last week it was 86 and today it took forever to get it out of the 60's.  I think my stomach is still queezie from reading the monitor.  I just knew that Dr. Donna would say something, but she didn't.  Never really batted an eye, so I think that maybe the monitor just wasn't working well.  I tried to get a reading with the machine I have at home, but it never reads what the office gets, so I just left it alone.  I can look at Charlotte and tell that she looks good and her color looks good, so I'm gonna try not to worry and just let her be.  Maggie and Emma had check ups and got good reports.  They both were so worried about getting shots, but VERY happy when they found out no shots til age 11.  Then Maggie realized that will be next year for her :(

Camp meeting this year was great..... Anna got saved this year and I am so happy and thankful to the Lord for answering prayers!  It is truly amazing to see your child change right in front of your eyes.  Anna has always been so sweet and loving, but the night she was saved, she hugged just about every person she new and just cried and smiled and laughed all at the same time.  It was truly beautiful, and such a blessing. 

Palmetto Hearts 5K Run & Walk

 

The event is scheduled as follows:

Palmetto Hearts 5K Run &Walk

presented by

Spartanburg Running Club

9:00 AM

Duncan Park, Spartanburg

Registration will be $25 per person. Children 13 and younger are free. All proceeds go directly to Palmetto Hearts and will benefit the families of children with CHD's. The registration fee is tax deductible.

Every paid registration will include:

Entry into the 5K Run & Walk

Event T-shirt

Entry into a raffle

Prizes will be given to the top three finishers in each age group, with divisions every five years.

This event is to raise money as well as awareness for Congenital Heart Defects, so I hope that you will register and participate!!!

Saturday, April 14, 2012

Laughter

laughter fills my house and it is so wonderful.  Last night the girls and I had been swimming and having a wonderful time til the Bats decided to nose dive at us.  We quickly decided that swimming was no longer fun, but scary so we decided to get out.  But before the bats came out, we were having a pretty good time playing in the pool.  Charlotte likes the pool, but she would rather just walk around the deck naked and walk up to the edge of the pool like she wants in then runs away.  She is so funny, her little personality is really coming out.  "No-No" is her new word and that is all we hear.  No matter if she wants it or not, "No-No" and shakes her head no.  Charlotte likes to play boo and we walk around the cabinet that separates the kitchen from the living room.  I let her see me walking around it a few times and she begins to follow, then I get a little ahead of her and scare her:)  Then she turns around and chases me around the cabinet and you can hear her saying "BOO".  Charlotte is such a sweet and loving child.  She loves her sisters and she loves Daddy and me:)  Brian walks in from work and Charlotte gets a grin on her face that covers her whole face and squeals and squirms til Brian picks her up:)  If any one lays in the floor, well you may as well be ready for a wallering.  Charlotte will sit on top of you and try to tickle your neck and bounce on your tummy and just waller you to death.  It is so funny to watch her do this to her sisters.

There are so many things about my little angel that I just love and then there is one thing that I hate.  I love every thing about her, I love to hear her laugh and cry and scream and grunt for me to hold her.  I hate that we live from Cardiology appointment to Cardiology appointment wondering when we have to go back to Charleston for what ever has to be done.  I hope that by her second birthday we know what we have to do.  Last cardiology appointment, Dr. Horne told us that a heart cath will determine if surgery is required or not, so we wait for the day for the dreaded heart cath.  Remember last heart cath, 2 days post cath Charlotte ended up in the hospital for a week with a partial bowel obstruction:(  So I am not looking forward to a heart cath for many reasons.  We have a cardiology appointment August 18th so hopefully we have a little more info then.

Anyway, back to the good things in life...... I am just so thankful that we have Charlotte.  I am thankful that we get to hear her laugh and see her play and pretty much act like a normal little girl.  Life has been so much better having her in it!  Thank you Lord for all that you have done for us!

Vacation

Ok, so the school girls are out of school and I decided a few weeks ago that I wanted to "try" and get our family on vacation as soon as possible.  I found a nice place at Ocean Lakes and off to the beach we went.  The first week out of school and at the beach, what a way to start summer vacation.  I had some reservations about going to the beach with Charlotte, Dr. Horne gave me a 30 minute sun exposure limit and I thought what would be the use in going.  Well it turns out that those 30 minutes was the best 30 minutes of every day.  Charlotte absolutely LOVED the beach, the feel of the sand on her feet and hands and the waves rolling in over her legs.

 Every time Charlotte looked out into the ocean and saw her sisters playing, she would wave and squeal and scream like she wanted on her boogie board.  A friend of mine was also down with her two children and her son had dug a hole for Charlotte to play in.  Charlotte realized while playing in the hole that there was stuff in the sand......needless to say, as close as I was sitting to her, I didn't get to her in time to stop her from eating a fist full of sand!  I panicked, but it only took her a minute to realize it wasn't something that she wanted to do again!  When we were at the pool, she liked playing with the balls that sprayed water. Charlotte could spray herself  and love it, but if another child came running up splashing her in the face, she didn't like that.

 Playing outside at the beach and pool definitely took its toll on her.  Charlotte would usually be asleep on the ride back to the house, but one afternoon, she feel asleep at the pool and napped on a table for a while.  Now you know that was good sleep.... nice breeze blowing and snoozing by the pool.

 Usually the heat bothers Charlotte, but it didn't matter how hot she was, she begged to go outside and play.  So, usually in the late afternoon, I would take her out and let her roam and search and discover new things in life.  The pond beside the house usually had 2 geese and 5 gosling's, and Charlotte would just talk away like they knew exactly what she was saying.  Seeing Charlotte around animals, I can see she has a love for them.  Every day we usually went for a ride on the golf cart, Charlotte wanted to drive and would get extremely mad when we wouldn't let her.  One night, we drove to Barefoot's landing and walked around.  The girls had their faces painted and we rode the Merry Go Round.

I must say that this vacation turned out to be GREAT!  I think it was something our family definitely needed.  Seems like it's hard to keep a good thing going though.  On Friday evening Charlotte woke from her nap burning hot!  I panicked of course and straight to the drug store for some Tylenol.  With a fever of 102.4 I began wishing we were home so that I could call the Dr.  Saturday, I medicated Charlotte and we made it back to the beach house around 8p.m.  I called the phone nurse and she referred me to the Evening Clinic.  Let me just say that the Evening Clinic was not a good experience.  Seems Charlotte had an ear infection, or so the Dr. thought.  Tuesday I took Charlotte to see Dr. Donna because she still didn't seem to be herself.  Seems somehow Charlotte and Emma and Lily have the hand, foot, and mouth virus which causes very painful blisters and high fevers.  So, with nothing to treat this virus with, its just a wait it out and tend to 3 little girls who are VERY whinny! 

                                    

One Year Appointments

     We have been busy with Dr. appointments this month.  Looking at the calendar, we have had at least one appointment a week..  A trip to Charleston for growth and development; Charlotte got a great report!  An appointment with the Pediatrician, Charlotte is the 70th percentile for her heighth and weight, and 93rd percentile for her head size.  I say she is the most "normal" heart baby I know!!!  The only thing we found at this check up is she has a UTI:( after enduring two urine caths, a week of antibiotics, and 2 shots of Rocefin, it's gone.  The only thing that lingers is an appointment at Greenville Hospital to test Charlotte for kidney reflux.
     We had an appointment with Dr. Horne (Cardiologist), and got a good report!!!  I always have a knot in my stomach going to the Cardiologist because you never know for sure what the news is going to be.  This appointment seemed crucial to me because it has been a year since surgery and I just figured we would be headed to Charleston.  Charlotte's sats were 85% and her blood pressure was 83/54.  The Echo showed little regurgitation from the right ventrical to the right atrium, the wall thickening that was present at birth was barely visable, and the 3.5mm shunt seems to still be functioning to some degree.  Looks like as long as things go good over the next year, we head to Charleston next summer for a heart cath.  The Cath will look closely at the function of Charlotte's heart, temporaraly closing off the shunt and the ASD (atrial septum defect).  If Charlotte does well during the cath, then possible no more surgery.  If Charlotte tanks during the heart cath, then that means surgery:(  All I can do is pray, pray that the Lord is merciful and continues to take care of my sweet daughter.

HAPPY BIRTHDAY CHARLOTTE

     It amazes me just how fast time flies.  I sit here thinking of all that has happened over the last year and WOW!  It is amazing that we have made it through this year and I know that it is only by the Grace of God that we have made it.  I recall packing and wondering exactly how our lives were going to be with a baby with a heart defect, wondering if my family would survive.  When Brian and I had gone to Charleston for Dr. visits and meeting the staff in PCICU, we were told to pack socks and receiving blankets.  Those would be things that the staff would use to make her crib more personal.  I think that I packed 8 blankets, and maybe 6 pair of socks.  Really, just how much is enough when you don't know how long you're going to be at the hospital?  Let's just say that after the surgery, Brian and I went out and bought as many blankets that we could find. I still have those blankets, tucked away so if we ever have to go back we can take them with us.  The Lord has been good to us, He has passed by our way on more than one occasion, and I am sooo Thankful for His Grace and Mercy. 
     After Charlotte had her open heart surgery, we were under the impression that we would be back for more open heart surgery some time around 6 months.  We had surgery scheduled for January, but when we went to Dr. Horne (Charlotte's Cardiologist) in December, he felt that Charlotte was doing well and that surgery wasn't needed right now.  Now you tell me that wasn't an answered prayer!!!  I sit and stare at Charlotte, not only admiring how beautiful she is, but realizing what a miracle she is.  I pray every night that the Lord continues to bless her, and watch over her.

     A year has passed and let me say that things have been nothing like I thought.  Charlotte just celebrated her first birthday!  We celebrated with family and friends at church with a birthday party and then we as a family celebrated on her offical birthday.  I found myself singing Happy Birthday to Charlotte all day.  Every time I held her I would sing and we would dance and she would just smile and laugh out loud and squeal.  I must say, we had some beautiful moments:) 

    

Spring Break

This week has been a little out of the ordinary for our family.  The girls have been on spring break and we have kept the road hot the whole week.  Originally, we had planned to go to the beach, but after looking at the weather for the week....... well, we decided to bail out on the beach.  Try staying couped up in a house with 5 girls wanting to play in the sand and water and with the temperature being in the 50's and raining, not a pretty picture.  I would have been committed to the insane asylum.  We ended up in Columbia on Tuesday at the Riverbank Zoo.  The weather ended up being great for the zoo and the girls LOOOVVVEEDD all the animals.  Could you guess which animal Charlotte liked the best....... the monkeys!  The monkeys were swinging around and they caught her eyes.  It was sweet watching her, she would sway back and forth and squeal and point at them.  Other than the monkeys, she just sat back and took it easy.  On the other hand, the rest of the crowd never slowed down til we were back in the van.  I thought we were headed home til Brian mentioned staying in a hotel and then the girls went wild.   I don't know what it is about a hotel, but give my girls a hotel with an indoor pool and you would think they had won the lottery.  We stayed in Columbia because we wanted to hit the Ed Venture museum on Wednesday and didn't want that 1.5 hr drive to travel again.  Being in Columbia made it easy getting up and to breakfast, then to the museum.  Ed Venture is awesome, and definitely keeps your children busy.  If you have never been, I suggest you visit.  Thursday, Brian tried to get the girls to go to Charlotte for Discovery Place, but can you believe they wanted to go to Hearts of Clay instead???  Let's just say that was an experience all of  it's own:)  That place was a mad house to begin with, then add our crowd to it and it just was CRAZY.  After about two hours and four beautiful creations later, we headed to Chuckie Cheese:\.  Brian said that Emma's little sea horse looked like a shark had drooled all over it.  I will post a pic of the art work when we get it all back and you be the judge.  Friday ended up being a day at home, THANK GOD!  I was exhausted from being in the car so much, and Charlotte gets so whinny being strapped in so much.  Charlotte likes being home, where she can rome and be nosy and just do what ever she pleases.  Brian had all the girls outside on Friday and Charlotte started CRAWLING!!!!  Charlotte has been doing "something" to get around, but she actually figured out the one knee in front of the other!!!!!  I am so happy, but o my goodness am I in trouble.  I had a great time with Brian and the girls this week.  It makes me look forward to summer when we all are together.  The only thing about the summer I hate is Brian having to work and not be with us, it stinks:(  Brian always says, "somebody has to finance this trip".  Well, maybe so, but I still don't like the fact that he misses out on so much.  Here are some pictures from our week, I hope you enjoy them.

Here are the girls at the Zoo

This is Emma at Ed Venture

This is Lily, Maggie and Anna in Ed's Chair!

Anna has a Parrot on her arm:)

Lily, my little Cow Girl.

This is Hollywood.....need I say more:)

    

She Can Move:)

Well it's official, Charlotte has figured out how to get up and be mobile somewhat.  I honestly didn't think that she would be doing this already because she hasn't really seemed interested in getting around.  I think that if Charlotte had her choice it would be for me to hold her and carry her everywhere!  When Brian or I try to get her to stand up, she holds her legs up, straight out in front of her like she's sitting on air and will just hang as long as you hold her.  We laugh at her because it's so funny, it's kinda like seeing who can hold out the longest.  Seeing if we can hold her til she drops her legs, which NEVER happens, we usually give in because she's so heavy!  So take a look, her she is with me and Maggie cheering her on!   

Charleston

My friend Rhonda and her son Mason are in Charleston because Mason has had his 2nd stage heart repair.  Well Rhonda has been in Charleston for what 6 weeks now, and looks like they are going to be there at least a few more because Mason has had a few bumps in the road to recovery.  As Rhonda wold say, Mason is just doing things "his way".  My family has really been praying for Mason to get better so they get to come home.  I know the toll of being away from home and being stuck in that hospital and it wears a person out!  Mason had to have surgery yesterday at 7:30 a.m. and I knew that Rhonda would be at the hospital and I hated the thought of that so ........... I decided to pack up and  head down.  I was a little worried because I have never driven that far alone with Charlotte and I was a little worried how she would do.  Amazingly, Charlotte did great, she slept almost the whole way down and back.  We made it to the hospital and stayed with Rhonda while she waited.  When the call came that she was allowed in PCICU, we said our goodbye's and we walked her to the door and left.  It was an answered prayer that Mason did well for the surgery. 

Doctors, Doctors, and more Doctors.

Charlotte seems to be having a hard time getting over what ever this is making her sick!  This makes the third trip to the doctor since we have been home from the hospital, and I am sick of going to the doctor!  Charlotte had to be seen today at the Pediatrician's office due to the snotty nose and cough that just want go away.  Well Dr. Donna checks Charlotte over and she has another ear infection.  This makes the third ear infection in the last two months!  This makes me worried, because I don't want any talk of tubes!!!  Seems that Charlotte may be suffering from allergies too.  Charlotte has to take Zyrtec and nasanex for two weeks to see if they help her any.  Then there is her O2 levels.  I check Charlotte's O2 level at least once a day, usually at night when she is asleep and I get 77 - 80%.  The machine at the office usually reads higher, so I took mine to see how they corresponded.  Today, both machines read 79%.  Dr. Donna asked me when we go back to the Cardiologist and I tell her May.  I tell her that the Cardiologist thinks Charlotte's O2 level decrease is due to the virus and congestion, but Dr. Donna says that her O2 level wouldn't be affected that much by the sickness.  I get the impression that Charlotte is out growing her shunt??? 

Cardiology Appointment

Charlotte had an appointment with Dr. Horne, our Cardiologist, on March 1st, and it ended up being a good appointment.  When we got to the office, the nurse checked Charlotte's O2 level and the machine read 90% and I laughed.  Charlotte has never had an O2 level of 90 %, so I asked the nurse to take it again.  The second time the level read 82-83%.  Dr. Horne tells Brian and I that things still look good to him and he just wants to watch her a few more months.  I must admit that it is music to my ears because honestly I was fearing the worst when we got to the appointment.  I am on pins and needles just waiting for the other shoe to drop.  I fear that one appointment we are going to get the news that Charlotte needs to have the Glenn procedure, this is step two, and it just makes my stomach hurt thinking about it.  Well, before we left, I asked the nurse to check her O2 sats again just to ease my mind.  This time, the nurse uses the O2 machine that is in the hospitals, and her sats are running 77 - 80 %.  So with all this said, I am praying to the Lord that all this is still related to Charlotte being congested, and that when she is finally over all this crud, her sats go back to 85%.

HOME

Thank God we are FINALLY home!  Dr. Lucas came by to see Charlotte and see how she was doing without the Oxygen and was happy enough to send us home.  Seems that the past 24 hrs, Charlotte's O2 level has been running about 72%.  Dr. Lucas finally admitted that this could be related to her shunt.  We are home with a pulse ox machine to spot check 3 times a day until we go back on March 1st.  I pray that Charlotte's O2 level rises because if it doesn't that is a definite sign that this is shunt related.  It is just a coincidence that this happened while she has been sick. 
When we got home last night, we had to go by my father in laws house to pick up Maggie, Anna, and Emma.  It was so wonderful to see my girls.  We hugged and kissed and hugged some more and said lots of I love you's!  My mother brought Lily home after church last night and when she walked in the door all the girls screamed out so loud and were all hugging.  It was the sweetest moment ever.  Rest assured, they will be killing each other again, soon.  It is so wonderful to be home all together again.   

Update!!

Ok, so it's been a while since I have updated and my daddy is really getting on to me about it, so here you go daddy!
My house is crazy right now, my life is crazy right now.  The girls have managed to get sick this month for the exception of Anna (Thank God) and Charlotte has had a really hard time battling this.  They all have the same symptoms: Cough, cough and more cough, runny nose and Charlotte has ran a fever.  Last week she ran a fever for four days (tues - fri) and it went away but the cough stayed.  Had a pretty good weekend and Charlotte started running a fever again on Wednesday and her color just wasn't the same.  Charlotte has been super fussy and cutting teeth like crazy so I just thought maybe it was the teeth bothering her, but when I finally took her to the doctor on Thursday, boy I felt like a dog!  Charlotte's oxygen level was 72 and the Dr. Donna called the cardiologist right away and it was decided to admit Charlotte to the hospital.  We get a fancy escort to the hospital via EMS because the nurse had started Charlotte on Oxygen in the office and she needed monitoring on the way to the hospital. 
The nurse tested Charlotte for RSV, Flu, and two types of whooping cough and everything came back negative, Thank God!  So now the race is on to find out what is the culprit.  Charlotte continues to run a fever every day and the doctor decides to start her on Tamiflu.  Seeing as the flu test is only about 10% accurate, "what could it hurt", is what I was told.  Seems that Charlotte is a bit anemic as well, so the doctor orders her to have iron drops.  As of today, Charlotte has been fever free for two days.  Charlotte just doesn't want to come off her oxygen.  Usually her sats run 85 and now they are 74???  Dr. Lucas, the Cardiologist assures me that this drop in sats has nothing to do with her shunt, but I wonder????  The shunt is so small, (3.5mm) eventually this is going to happen.  I am praying that if ANY surgery is required it is only a shunt revision, and not the Glenn!  I just have to place my trust in the Lord and know that he is in control.  So with the first trial of taking her off the oxygen this morning, she did ok at first...... notice I said at first.  The monitor stopped working because the probe had just been used to long, so when I got her hooked back up her sats were 69:(  So back on the Oxygen for a while and hopefully try again later today.  I want to go home and see my other children.  I have talked to them all but Emma.  Emma doesn't like to talk to me on the phone so I miss her terribly, and I have spoken to the rest, but still I want to go home.  I want to see my kids and hug and kiss them!  So far we have been her at  Greenville Memorial 6 days, way to long!  Makes me wonder how mad I will be if or when we have to go back to Charleston!  Not something I like to think about!  Hopefully I will have something to update in a few days! 

Heart Mom's Night Out

Tonight was my Heart Mom's meeting, and it was wonderful to see my new friends.  I have only met most of these women once, but I feel like I have known them a long time.  We had a new mom tonight and I just want to welcome her.  I know for me, until this group came about, I felt isolated.  I felt like I was the only one with a child with a heart defect, even though I knew better.  I longed for someone to talk to that knew what it was like to "walk in my shoes". 
It wasn't long after we had came home with Charlotte that I had to call the Pediatrician's office about Charlotte.  Lucky for me, Dr. Yelton was the doctor that called me back.  While talking,  Dr. Yelton mentioned that there was a heart baby that he looked after a bit older than Charlotte.  I really didn't think much of it at the time, but as time passed I wanted to know who this other mother was with a heart baby like Charlotte.  With 4 other children, I spend a lot of time at the Pediatrician's office......during one of the visits, Dr. Yelton was the doctor taking care of my child.  I mentioned to Dr. Yelton that I knew he couldn't give me any info on the heart baby, but if I gave him permission, could he PLEASE give my info to the mother and see if she would call me.  The next day my phone is ringing and I answer it saying "hello?" and I hear a voice on the other end........"yes my name is Tina Bentley and Dr. Yelton gave me your information and asked if I could give you a call".  Can I say that my life has been changed forever because of Charlotte, but also because of Tina.  I think that Tina and I stayed on the phone over 2 hours that first conversation.  I had many questions and was so THANKFUL that she had called me.  Somewhere in our conversations, Tina heard the need for me to connect with mothers that had children with heart defects.  So Tina came up with the concept of a heart moms group. 
Heart Moms of the Upstate, that is the name of our group.  We meet the first Friday of every month and tell our stories, upcoming surgeries, prayer requests, anything that we feel is helpful to each other.  It amazes me the strength that you can get from each other.  Maybe it's because we know that we each have walked down the same path, some the same way, others a different way, but essentially getting to the same place.  It is a comfort to me knowing that at any time I can call on these women, and that they can call on me!  I look forward to our meetings and meeting new moms and hearing their stories.  Hopefully, at some point, we all can get together with our families and celebrate that God had brought us all together as a family!  

9 Month Check-up

Today my Angel is 9 months old and we had her check up this morning.  Dr. Donna tells me Charlotte is growing like a weed.  Charlotte is 19# 7 oz (65 percentile), 28 inches tall (65 percentile), and her head is 18 1/4 inches (95 percentile).  Charlotte's oxygen level today was 83 percent, she is a little congested, and I am not worried.  Dr. Donna thinks that some of the congestion is coming from Charlotte cutting two new bottom teeth, and trying to cut 4 on top all at the same time!!!  Dr. Donna tells me that Charlotte is the best looking Cardiac baby she has ever seen!  I am thankful!!!  Thankful that the Lord has brought us this far in the journey!  Thankful that the Lord has taken care of Charlotte.
You know, going to the doctor isn't always fun, just ask my 4 yr old, Emma.  While signing in this morning, she got her middle finger caught in the door of the waiting room, OOOUUUCCCHHH!  Her little finger was pinched pretty good.  Her fingernail is purple, and probably will come off at some point, and the skin is red and swollen.  Emma is walking around with her middle finger extended and all I can do is laugh.  I wonder how many people are wondering why she is pointing her "bird" finger!!!  O well, glad we were at the doctors office! 

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!  

Recovery

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!

Surgery

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. 

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!

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?