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 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!!!!!!
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