The Theory of Everything

Charlotte is a whopping 7 pounds now! Laura's sister and brother in law, have given Charlotte a bouncy seat that vibrates and has a bar overtop that plays music and lights up. Charlotte is awake more during the day now, so she loves to sit in her bouncy chair and stare at the lights. She is almost done with using a breathing tube. She is down to .1 liters, which is almost no support. She has been doing well with the feeding tube in her intestine. Her food is given over 24 hours, so she gets very small amounts at a time. This helps to decrease her reflux. Because she has done so well, the doctors have moved the feeding tube back into her stomach to prepare for tolerating food in her stomach. She is doing really well. Her breathing is stable, and she is not refluxing very much. However, Charlotte had a second swallow study and didn't pass it again. So, we have to wait 3 more weeks to see if she improves. If she doesn't pass the third time, she will receive a tube in her belly that will allow us to bring her home but give her food to her through the tube until she can swallow all her food by mouth safely. Some children who have required extended assistance for breathing take longer to learn how to swallow because their breathing/swallowing structures are very weak. We have several friends who we have met in the NICU who have had this procedure done on their child, and it has gone very well. We will do whatever we need to do to get Charlotte home. We are still working on finding a reason for Charlotte's low platelets. She still needs transfusions of platelets 1-2 times a week. Charlotte is the subject for a pilot research study at the University of Maryland which aims to look at a person's entire genome, which is their entire genetic code, to find a reason for their disease. After looking at Charlotte's entire genetic code they still can not figure out why she has low platelet levels. Laura is currently reaching out to several experts in the field of hematology around the country to obtain second opinions that might help the doctors manage Charlotte's low platelets. She is gathering lots of great information and is hoping to pass it along to the doctors at Maryland this week.

Having a critically ill child can pull a parent to a new low they never knew existed. With the unceasing amount of tests, scary possibilities, and unknowns that we have had to endure since December when Laura's pregnancy troubles began, our strength and faith have truly been put to the test. Recently, we watched an inspiring movie about Steven Hawking called "The Theory of Everything." For those of you who don't know, Stephen Hawking is regarded as one of the most brilliant theoretical physicists since Albert Einstein. At the age of 21, he was diagnosed with a motor neuron disease and given two years to live. He is now 72. Towards the end of the film, Steven Hawking makes a bold statement that truly puts life in perspective. He says, "There should be no boundaries to human endeavor. We are all different. However bad life may seem, there is always something you can do, and succeed at. While there is life, there is hope."

Best Part of My Day

The most significant things in life are rarely easy, that is what makes them significant. With Charlotte being born three months early, we were told to expect to be in the NICU until roughly her original due date. Well, the original due date (May 4th) has come and gone, and here we sit, still in the NICU, waiting for answers.

Is it frustrating?
Yes.
Is it difficult?
Oh course.
Do we have bad days?
Ask any parent in the NICU....You can find new lows you didn't know existed.

But......the best part of my day is when I push the button to open those automatic, double doors and walk into the NICU. I am supposed to scrub up before I visit her, but I at least have to walk in and let her know that I am there. I cannot seem to wash my hands quick enough so I can get back in there and be with her. Yesterday the nurse woke Charlotte up to do her cares and she started crying when the nurse began to change her diaper. I said, "Charlotte, its going to be okay." She immediately stopped crying and started looking around for me. The nurse and I both started laughing at the obvious site that Charlotte recognized my voice and did not know I was in the room until that moment. A moment I will never forget.

Part of life in the NICU is not knowing what lies ahead. It is easy to get distracted or overwhelmed with all the test results, new symptoms, alarms buzzing, and doctors running in and out. I sometimes find myself asking, "Why?". No matter how long or hard I think about that question, I never come up with an answer. God has a plan for Charlotte. God has a plan for Laura and me as well. There is no doubt that His plan will be difficult and challenging, but that is what makes it significant.

I love you, Charlotte.

See ya later, vapotherm!

We had a wonderful Mother's Day this week! We spent the morning with Charlotte and took her 3 month pictures in her pretty new outfits. It is amazing how far we have come from the day Charlotte was born. She is 6 pounds now! The speech therapist performed a swallow study and found out that Charlotte has been aspirating her milk. This means that instead of the milk going down her esophagus, it is going down her airway and into her lungs. They believe that this is happening for several reasons: 1) because Charlotte was intubated with a ventilator, her vocal cords are irritated 2) because she has severe reflux, her esophagus and vocal cords are irritated 3) she needs more time to mature due to being born very early. They have moved her feeding tube lower into her intestines in order to bypass her stomach. This will prevent her from having reflux and allow her esophagus and vocal cords to heal. Since moving her tube, her breathing has also improved, because now Charlotte isn't refluxing food into her lungs. This is allowing her lungs to heal and work more efficiently. The doctors decided to put her on a nasal cannula which is a lower flow of oxygen. Hopefully with less breathing support, Charlotte's lungs will get stronger. This is the last step before she can breathe on her own. They are going to repeat her swallow study in 2 weeks to see if she can swallow milk correctly. We also completed our first March of Dimes Walk this week! We walked on team Caleb Mason. Our friend Katelyn had a son prematurely, and he has been receiving care at the University of Maryland. It was so nice to be surrounded by friends and families who have also gone through the experience of having a child prematurely. If you ever get the chance to participate in this wonderful event, I encourage you to donate towards a great cause! The March of Dimes Organization helps moms have full-term pregnancies and healthy babies. If something goes wrong, they offer information and comfort to families. They research the problems that threaten babies and work on preventing them. The March of Dimes also funds lifesaving research and speaks out for legislation that improves care for moms and babies. 

Happy due date, Charlotte!

We have officially reached Charlotte's due date which was around May 4. She is "full term" now, and so she will start going by her adjusted age until she is 2 years old. So, even though she is 3 months old, she is really acting like a newborn, because she would still have been growing in Laura's belly until now. Charlotte had her developmental assessment now that she has reached her due date, and she passed it with flying colors! This assessment determined if Charlotte would need therapy at home. She is doing everything she should be doing for a newborn baby. The doctor "did not recommend any home therapy at this time." It must have been the UNC onesie! We give Charlotte sponge baths regularly now, and she loves to sit in the basin of water to rinse off. Charlotte is now wearing "newborn" sized clothing and diapers instead of "preemie" size. So, we brought in all of the wonderful gifts from our amazing friends and family! Everyone keeps commenting about all of the outfits and pictures we have hanging saying, "she is one loved little girl." It's true. The constant reminders of how blessed we are with a loving support system are all around Charlotte's room. Charlotte is part of a pilot research study which is looking at her entire genetic code to determine why she has the medical conditions with her heart, adrenal glands, and platelets. The study was hoping to find one cause for all of it, and help the doctors manage her medical conditions better. However, the test did not find any genetic causes for Charlotte's conditions. So, next week the hematologist is going to do a bone marrow aspiration to draw out part of Charlotte's bone marrow and look at it under a microscope to see if her bone marrow is making any platelets. Hopefully, this will give us some answers. Charlotte continues to work with OT to drink from a bottle with thickened milk. The thickened milk is to ensure that none of the milk goes into Charlotte's lungs. They are hoping to do a swallow study soon to determine how she swallows, and give her the right consistency of milk. However, Charlotte still needs "vapotherm" which is a machine that gives a high flow of oxygen and that makes it difficult to get her down to the swallow study room. The Occupational Therapist is working on a plan to get the study done, because when they see how Charlotte swallows, they can give her more milk. The physical therapists showed us massage techniques to help Charlotte relax and stretch. She loves to have her arms and legs massaged! Everyday is a new adventure, but we are so thankful for the exceptional medical care that Charlotte is getting! The University of Maryland staff have been such a blessing.