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.

8 lbs

What a little chunker we have on our hands! Charlotte is now 8 lbs. she is getting stronger by the day. This week, Charlotte became a "flipper." She officially rolled from her belly to her back for the first time! We are so proud. Laura couldn't stop talking about it all day at work. David is officially on summer break from school, which means he gets to spend much more time with Charlotte. Laura has returned to work part time and enjoys getting out and being around her old co-workers. Because Charlotte has been stuck so many times for blood and IVs, the doctors have decided to surgically place a central line which is a permanent IV site where the nurses can draw blood, give antibiotics, give platelets, etc. Charlotte's poor little body was beginning to look like a pin cushion. So, we are glad they can place a permanent line for a while. This means she won't have to get stuck anymore! We found out that one of her favorite nurses, Ashleigh watched the Lion King with her one night. So, now we watch movies all the time including Little Mermaid, The Lion King, Cinderella, etc. Charlotte really seems to like watching movies and especially loves the music!

Father's Day

We have had such a wonderful week! Lynda, David's mom, AKA Gema, came all the way from North Carolina to stay with us for a week and spend time with Charlotte. Having her in Baltimore with us has been such a blessing. She helped cook, clean, and stay with Charlotte while Laura ran errands and David worked. Having family support has been our biggest gift. We have a wonderful family. Today is David's first Father's Day! Charlotte and Laura spent a lot of time getting gifts together for David to make it extra special. It was very appropriate that on Father's Day, David received two gifts that were Tom's, Laura's dad's. Laura's dad was a model for fatherhood. David is already proving to be just as good a father as Tom. Donna, Laura's mom, gave David Tom's nice Nikon camera, so we can take beautiful pictures and videos of Charlotte. (When we learn how to use it!) Also, Laura and Donna gave David a book that Laura had given to her dad. The book is a compilation of stories from daughters to honor their famous fathers. The list of famous father's includes Johnny Cash, Nolan Ryan, George Bush, etc. Laura had written a beautiful dedication to her dad. Donna wrote a beautiful dedication to David underneath of it. Charlotte made David some beautiful gifts also. She made him a baseball with her handprint and on the back signed it "Happy First Father's Day. Love, Charlotte." He is going to proudly display this gift on his desk at work. She also made him a First Father's Day picture that we framed with her hand and foot prints. It was a very special day. Then, we found out Charlotte contracted meningitis. We don't know how. She spiked a 103 fever on Saturday, and they immediately started giving her the dose of antibiotics that treats meningitis. Then, they did a lumbar puncture that confirmed the diagnosis. So, Charlotte will get 21 days of antibiotics to cure the meningitis. Then, she will hopefully get her G tube. We are so thankful that they caught the meningitis early, because Charlotte is back to her old self now. She is just as feisty as ever!

4 months

     Charlotte is a whopping four months now! She is 7 pounds 4 ounces and growing. Charlotte is becoming much more expressive and interactive now. She loves her mobile above her bed, sitting in her bouncy chair, staring at the lights and sounds, and sitting in a warm bathtub. Most of all, she loves to be held. David and I love holding her. Now that she is the size of a normal full term baby, it is easier to cuddle her. The nurses say she is definitely their favorite. Maybe it's because they have gotten to know her so well in the 4 months we have been there!
     Charlotte will have a sleep study on Wednesday to see how much oxygen she will need when she comes home. Then, the doctors have agreed it is time to place the g-tube in her belly for feeding. This is great news, because that is the last  step before Charlotte can come home! She will work on swallowing as an outpatient with a speech therapist that will come to our house. When she is able to swallow correctly and drink a whole bottle, she will have the tube removed. She had her bone marrow aspiration surgery, and it showed that her red and white blood cells are normal. However, she has 1 platelet. A normal count is 150,000-400,000. Tentatively, the hematologist has diagnosed Charlotte with CAMT. However, there has been no gene found that causes this diagnosis. So, we are getting a second opinion from doctors at Texas Children's Hospital who are experts in this diagnosis. We are going to meet with the transplant team at the University of Maryland tomorrow and get lots of information regarding the next steps with Charlotte's transplant.
     Charlotte has her own Facebook event now to encourage people to register to be a bone marrow donor. The event was a huge success. We reached out to almost 7,000 people and counting. Countless amounts of people have registered to donate and we could not be more excited. If you would like to register to be a bone marrow donor, consider signing up online. They will mail a kit to your house and a simple swab of your cheek could save a life. We believe that this is the purpose of Charlotte's journey.
     Most people don't know this story, but one day right after Charlotte was born, a man and I were riding the elevator at Mercy Hospital. He saw my purple NICU badge and asked, "Did you just have a baby?" I replied, "Yes. I just had a baby girl." He said with a big grin on his face, "Maybe she'll be the first female president!" I smiled politely. After he stepped off the elevator, I began sobbing. All that I could think about was how hard Charlotte was battling to survive. How could anything good come from our situation? Now I know I was dead wrong. Charlotte is helping other people find their life saving bone marrow match. She is helping save other people's lives at 4 months old. What a change she is making already.

https://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/
   

                                       

The diagnosis

This has been the most informative week so far! We finally have an answer for what has been causing Charlotte to be so sick. It is both a relief and terrifying at the same time. This week she finally received a diagnosis of Congenital Amegakaryocytic Thrombocytopenia from our hematologist. This is a long name that basically means Charlotte's bone marrow does not make platelets like it should. We knew she had a low number of platelets in her body, but there are many reasons why this can happen. After endless amounts of testing, we finally have the answer. What caused Charlotte to have this bone marrow failure syndrome is that we passed it on to her. This is where you need to pull out a genetics text book. We are both carriers of a recessive gene for a very rare bone marrow failure. At conception, we both passed on our recessive gene to Charlotte. Therefore, she now has a bone marrow failure syndrome. The probability of both of us having this rare gene, and then passing it on to Charlotte, is so slim it is almost unbelievable. Our hematologist has never had a patient with this diagnosis. This diagnosis also explains why she had growth restriction in Laura's belly, why she had a heart defect, why she had an endocrine problem, and why she had low platelets. This diagnosis causes those things to happen. To be honest, as a mother, it is a huge relief to Laura to know that it is not something she did while pregnant that caused Charlotte to be so sick. (Even though Laura had followed all of her doctors instructions to a T.) Ultimately, Charlotte has a syndrome caused by genetics. The genome study in which Charlotte is involved is searching for the gene that caused this bone marrow failure syndrome, so that we can have that knowledge when we have children in the future. So, now Charlotte will be having a bone marrow transplant. This is the only way that Charlotte's bone marrow will ever be able to function properly. Because she is Caucasian and she is small, we will have a large selection of donors to search for a 10/10 match for Charlotte. (There are 10 antigens that a person needs to be a perfect match for a bone marrow transplant.) Charlotte will have a bone marrow aspiration next week which is a procedure to draw out part of her bone marrow and look at it under a microscope. This will tell us definitively that she is not making any platelets. Then, we will start looking for a transplant donor. Charlotte will most likely have her transplant when she is around 7-8 months old. It will be a difficult road for a little while, but we have several friends and doctors from around the country who are well versed in bone marrow transplants. We are armed with lots of information and lots of support! We will look at several hospitals including Hopkins, CHOP, and DC Children's hospital and pick the best one for Charlotte. In regards to Charlotte's stay at the University of Maryland, we are working on the final piece of the puzzle to get her home: swallowing. One day at a time, as they say. As for our family, we are stronger than ever, and this is only going to make us closer. As for Charlotte, "Though she be but little, she is fierce!"