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!