Charlotte's Journey: The Last 8 Months

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.

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Heart Poem

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

THE CHOSEN MOTHERS BY ERMA BOMBECK

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

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

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

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

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

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