Charlotte's first outfit

We have reached our next big milestone! Charlotte weighs 3 lbs 5 ounces which is 1515 grams. On Friday evening, the nurse told us that when Charlotte reached 1500 grams, that we could put her in her first outfit. Then, they will turn off the heat in the incubator, and she will start working on maintaining her body temperature on her own. However, she also told us not to rush it, because they want to make sure Charlotte has enough body fat to keep herself warm. To our surprise, tonight our nurse said, "She is big enough to put her in clothes if you want." We were shocked. She said it so non chalantly. The look on our faces was priceless. Before we put her in clothes, we both were able to do Kangaroo care with Charlotte. This is one of the first days where we each were able to hold her in two separate care sessions. She maintained her breathing well during both sessions. We can definitely tell that Charlotte is staying warmer while we hold her.  Then, after the Kangaroo Care, we dressed Charlotte in her first pair of pink, footy pajamas. She looked adorable! It was a wonderful evening.

3 pounds

Our little girl is continuing to make big gains this week. She is 3 lbs which is double her birth weight.  She is now considered a "feeder and grower" which means she is stable and just needs to eat and get bigger. They have moved Charlotte to the "feeder and grower" room which is on the same unit, but it is MUCH quieter. Last night there were so many babies in our room with emergency interventions that it sounded like downtown Baltimore City traffic had entered the room. Bells, whistles, and horns oh my! Charlotte's new room is very calm. It should be easier for us to have nice, quiet Kangaroo Care in there. Charlotte's feeding tube has been moved from her mouth to her nose because she is preparing for sucking and swallowing without it. We have tried the pacifier a few times, but she is still getting the hang of sucking. They are going to start Charlotte on a new medicine to help with her aldosterone, because Charlotte's body is having a hard time making it right now. However, they need to find a way to make the dose small enough for Charlotte. They also have started Charlotte on medications for her breathing this week. They want to help her stop using the supplemental oxygen soon. The medicine has really helped with her breathing! Charlotte is getting big enough to start dressing her up with cute little accessories. The nurses gave us some flower head bands to give Charlotte. Also, friends and family have given her lots of pretty outfits. Her grandparents from Wilmington, NC brought several  UNC pieces. We can't wait to dress her up in the new clothes that everyone has given her!

Endocrinology

     We have been worried about Charlotte's endocrine system for a while now, because her potassium and sodium levels have been abnormal which indicates her adrenal glands might not be working. The adrenal glands secrete hormones that help regulate these levels in the blood. The endocrinologist sent out several tests, and they have come back with some answers. Charlotte had some elevation of her cortisol levels which is a hormone that indicates the body is experiencing stress. The doctors are not too concerned, because often premature babies will have this result due to difficulties with breathing and other things that are stressing their body. The doctors are just going to watch Charlotte closely and repeat the same tests in a few weeks once she is bigger. They are thinking that she may just need more time to grow. This is great news, because it is very scary when the doctors are talking about the possibility of Charlotte having an endocrine disorder or needing long term medicine. Today, Charlotte's sodium and potassium levels have actually started show signs of improvement which is great!
     Charlotte is really starting to fill out. She is 2.5 pounds now and is starting to look like a healthy little girl. David has held her several times this week, and we have started to read Charlotte bed time stories because she seems to be becoming very comfortable with being held. She also likes to listen to music. The integrative medicine team at the hospital has started to see Charlotte. Last week they played the harp for her, and she really liked it! David and I also play music for Charlotte. Our selections include AC/DC, Led Zepplin, and an array of classic 80's hits. Charlotte will definitely have a well rounded taste for music. Papa T would be proud!
     Laura had her first baby shower this week which was given by her friends from Baltimore. The girls put together a beautiful brunch at a local restaurant. Laura had so much fun spending time with everyone. She truly has an amazing group of friends who have been very supportive since Charlotte was born. Charlotte can't wait to meet them. Before we know it, she'll be one of the girls!

See ya, CPAP!

We have had a big week so far. Charlotte has been taken off of the CPAP machine and is using a nasal cannula to breathe now! Charlotte hated that mask, and her face really looks beautiful without all of that head gear. She also had her follow up eye appointment this week, and the doctors still see no signs or retinopathy of prematurity. She is eating 18 milliliters of food every 3 hours and is 2 lbs 3.5 ounces. Her potassium is stable, and she is getting sodium supplements. Genetics tests are slowly starting to come back finally. The test for trisomy 13, 18, and 21 came back negative. However, Charlotte's low platelet counts are our biggest concern, because she is still receiving transfusions every couple of days. We are concerned that her bone marrow may not be working correctly. Our hematologist is sending out lots of tests to try and figure out what may be causing the problem. David and I will have our blood drawn on Saturday to see if it will provide any answers. Laura held Charlotte for four hours Wednesday, and she did great. Her breathing was much better while she is being held. Kangaroo care has been shown to have benefits including stabilization of organ function and self-regulation abilities, facilitation of better sleep patterns, stabilization of the heart rate, improved breathing pattern, improved oxygen saturation levels, more rapid weight gain, decreased crying, and a shorter hospital stay. We can't wait to take Charlotte home!

Happy birthday, Charlotte!

Charlotte turned 1 month old today! It is unbelievable to think that we have been in the NICU for four weeks now. The past few days have been pretty uneventful. Charlotte continues to breathe well with the help of the CPAP machine. She uses low levels of supplemental oxygen, and the nurses are lowering her assistance as her breathing improves. Charlotte's IVIG treatment was completed. We are still waiting to see how this will effect her platelets. Her potassium levels have remained stable since we arrived at the University of Maryland. The doctors have been monitoring Charlotte closely by drawing blood frequently, and so she has had a few blood transfusions. However, as Charlotte's blood levels stay stable, the doctors have been drawing blood less often, which means less transfusions. Charlotte is 915 grams now, which is still about 2 lbs, and she is slowly gaining every day. She is eating 17 milliliters of food every 3 hours, and the doctors have added sodium supplements to her food to maintain her body's sodium levels at a normal range. Charlotte has gotten quite the reputation in the NICU. She poops and pees very regularly, and most of the time they do not stay in the diaper. The nurses are glad to have David and Laura help change the diapers. Laura and David get to hold Charlotte almost daily now. Today, Laura held Charlotte for 2 hours and her breathing becomes much better during Kangaroo Care. The skin to skin time is wonderful! The social worker has informed us that the doctors are thinking about sending Charlotte back to Mercy Medical Center soon. We are so excited. As long as the doctors think she is ready, we are ready for our private room back. Charlotte has high standards and prefers to have her own room overlooking the veranda. 

Two pounds

Today Charlotte had her first eye exam. The ophthalmologist tested for a disease called Retinopathy of Prematurity (ROP). When babies are born prematurely, it can cause abnormal blood vessel development in the retina of the eye. Charlotte passed her test with flying colors! She is Stage 0, which means the doctor saw no signs of ROP. They will test her eyes several times in the next few weeks to monitor her and make sure the blood vessels in her eyes continue to develop normally. Charlotte has also received 2 doses of her IVIG treatment to help her body make platelets. She has tolerated the treatment well so far. She will receive one more dose tomorrow. She is eating 15 milliliters of food every 3 hours and tolerating it very well. With the feedings, her potassium and sodium levels are normal so far. The doctors are checking her levels every morning to make sure they are stable. Laura and David were able to do Kangaroo care with Charlotte. She loved it! (Tonight, while Laura was holding her, she peed all over Laura's shirt.) The really exciting news is that Charlotte weighs 2 pounds now! Grow Charlotte. Grow!

The specialists

     Today was the busiest day that we have had so far. We met with several doctors. The day started out with rounds, where Charlotte's neonatologist and nurse practitioner assess how she is doing, and then they make changes to her medical care. The neonatologist has started Charlotte back on her full feedings because her potassium and sodium have returned to normal. Since resuming her feedings, Charlotte's blood levels have been normal. They will continue to monitor her as she gets more feedings. Charlotte is much more calm now that she is allowed to eat again! She continues to do well with her breathing and is using the CPAP machine with low amounts of supplemental oxygen. Laura was able to hold Charlotte for 1 hour today, and it went very well!
     We met with the endocrinologist, and she is waiting for the blood labs to see if they show any problems with Charlotte's aldosterone. Aldosterone is a hormone produced by the adrenal gland. It regulates the balance of water and electrolytes in the body. She thinks this could be a reason for why Charlotte's sodium and potassium levels are abnormal. If so, they can use medication to treat the problem. However, Charlotte doesn't have the other symptoms you would typically see when there is a problem with aldosterone. So, we are waiting to get more answers. 

     Then, we met with the geneticist who did a physical exam of Charlotte to see if she had any dysmorphic features which is a difference of body structure. They can be related to a congenital disorder, a genetic syndrome, or a birth defect. She didn't see any dysmorphic features. She will also be looking at blood work that was sent out to a lab to rule out any underlying disorders or diagnoses. 

     The nephrologist did a renal ultrasound of Charlotte's kidneys this morning and found out that Charlotte has dual collecting ducts in her kidneys. Most people have one in each kidney. This will likely not cause any problems. Some people just have two sets of ducts instead of one. However, some people can develop an obstruction, reflux, or an infection. The nephrologist suspects that Charlotte may have had a urinary tract infection which caused her blood levels to become abnormal. They will closely monitor Charlotte to see if it happens again. Also, they will monitor how Charlotte's kidneys react to food. 

     The hematologist met with us about why Charlotte's platelet counts have been decreasing. He believes that Charlotte has a diagnosis called NAIT. Neonatal Alloimmune Thrombocytopenia is caused when the mother’s and baby’s platelets become incompatible, and so the baby's body attacks its own platelets to get rid of the mother's platelets. This can be treated with IVIG therapy. IVIG is given as a plasma protein replacement therapy for immune deficient patients who have decreased or abolished antibody production capabilities. We will wait to see if the neonatologist thinks that Charlotte needs this therapy. Otherwise, we can continue to give Charlotte platelet transfusions and wait for her body to start producing them on her own. David and I will have our blood drawn to see if we can find a definitive answer for whether Charlotte has NAIT or not. 
     Charlotte is continuing to grow and gain weight every day. She weighs 1 lbs 14 ounces now! All of the lines in her arms and legs have been removed because now she is back to eating by mouth. Her skin is looking great. Today is Dr. Seuss's birthday, and we found the perfect motto for Charlotte!