Count it all joy

     At work today, after I commented on a patient's struggles in rehab, my patient made the statement "Count it all joy." I asked her, "Where did you get that saying?" She said, "It's in the bible. No matter how hard it is what you're going through, count it all as joy. I'm still here, and I'm getting better." That comment truly struck me. That is a beautiful way to live your life. That is what David and I aspire to do every day. No matter how hard Charlotte's struggles have been, there is always joy to be found in every day. We have cherished having Charlotte home every day.
     The day after Charlotte came home, we met our pediatrician, Dr. Marshall, who is a resident at the University of Maryland. She is so patient and kind with Charlotte (and her first time, nervous parents). She said she doesn't use the term often, but Charlotte truly is a "miracle baby" given all the challenges Charlotte has had to endure. We looked at each other and immediately knew we wanted her to be Charlotte's pediatrician. We will be following her to Kennedy Krieger when she finishes her residency. We are so lucky to have found such a special pediatrician to care for Charlotte. We have also had appointments with endocrinology, hematology, and her developmental specialist. Charlotte is still meeting all of her milestones! The doctor said that it is amazing how well she is doing given how sick Charlotte has been. We will be very busy parents for a while.
     After being discharged from the hospital for 2 days, Charlotte was re admitted for pneumonia. She had been progressively throwing up more and more food when she came home. As she swallowed some of that food, it went into her lungs. So, Saturday night we went back to the hospital with a temperature of 101. The progressive pediatric unit at the University of Maryland is wonderful. (Even though we hated to be back in the hospital.) It is not an ICU like the NICU. It is more family friendly. The rooms are big. Parents have a place to sleep and are encouraged to stay. It is full of children of all ages. All of the doctors came in to see Charlotte immediately the next morning. They did a chest X-ray and saw some changes in her lungs. The GI doctors think Charlotte has an allergy to normal formula. So, when the NICU doctors tried to switch her from her hypoallergenic formula to regular formula before she discharged, it messed up her stomach. So, the GI doctors have spread out Charlotte's meals over a longer time period to give her belly the chance to get better as she readjusts back to hypoallergenic formula. Now we are home again on antibiotics for pneumonia. Charlotte is so happy at home. She sleeps in her rock and play that plays music. She loves to be held and play on her play mat. She is starting to "talk" so much. Life as a family of three at home is wonderful!

Home

Our hearts are full. After 166 days, Charlotte is finally able to come home.

Happy Fourth of July!

Charlotte is 9 lbs now and growing! We had a wonderful Fourth of July as little family party of 3. We watched Team USA win the Women's World cup! (Well, Charlotte mainly slept through it.) Charlotte has started smiling now, although its hard to catch on camera because it happens so quickly. The nurses have a running bet going on about who can get her to smile at them the most. She loves to sit up in her boppy and watch everything that the nurses are doing. She is very observant and doesn't let anything get by her. Maybe she will be a nurse some day, just like her Nana. When we had the sleep study, the assistant was an Aquarius, just like Charlotte. She was as a respiratory therapist training to do sleep studies. She informed us about typical Aquarius traits. Apparently, Aquarius signs are intelligent and always looking for intellectual stimulation. They also have a varying array of interests. Sounds like Charlotte! It's been another busy 2 weeks medically. The surgical team placed a line in Charlotte's neck for 2 weeks called an IJ line, so that she could get her antibiotics without being stuck for an IV in different limbs over and over. Well, Charlotte has always had a mind of her own, and she is very strong. So, after 2 weeks, she had had enough, and she pulled the line out of her neck. The surgical team quickly decided it was time for the big central line and G tube surgery. Way to get things done, Charlotte! The surgery went very smoothly. The antibiotics for the meningitis are done because it has been 21 days. Charlotte is back to her old self. The central line in her chest will stay in until she has her bone marrow transplant, so that she can receive her platelets through it. The G tube is a tube in her belly that will allow the NG tube in her nose to come out, and we will feed her through it. Once she passes her swallow study (hopefully in August, which is her next one) the G tube will be removed. Both the central line and G tube are small, so you can't see them under her clothes. Charlotte looks even more beautiful without the tape mustache and tubing on her face. She almost looks like a different person. Hopefully now that the tube in Charlotte's nose is out, she will be able to breathe better. She's still on a little bit of oxygen now. Hopefully her doctor will trial her without it soon. This week we will do training to learn how to care for the lines and use the G tube. We may have some exciting news coming up this week!

 

 

After 45 years as a NICU nurse, one of our favorite nurses, Elaine, is retiring. Charlotte was her last baby.