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.

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!

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!

The University Of Maryland

     The head of University of Maryland's neonatology department has recommended that Charlotte be transferred to the NICU at the University of Maryland because Charlotte needs to be seen by several specialists. All of the doctors that Charlotte had seen at Mercy Medical Center also work at the University of Maryland, because these two hospitals are sister facilities. Charlotte will be seeing a nephrologist, an endocrinologist, and a hematologist. The nephrologist will be assessing Charlotte's kidneys because she has had abnormal levels of sodium. The endocrinologist will be assessing her abnormal levels of potassium. The hematologist will be assessing her low platelet levels. Once Charlotte has been seen by all of these specialists, we can transfer back to Mercy Medical Center. Before we were transferred to the University of Maryland,  Laura and Charlotte had a great Kangaroo Care. Charlotte loves to be held, and Laura loves to hold her. It is very scary having to leave our wonderful NICU at Mercy, but we know Charlotte needs the care that the University can provide. The transport team consisted of four people and one tiny portable incubator. Charlotte did so well breathing on the ride to the University that the doctors put her back on CPAP, and she has tolerated it very well. Her breathing is really improving!
     Since arriving at the University of Maryland Medical Center, Charlotte's medical status is improving. They have taken lots of blood so that they can check all of Charlotte's blood levels and also try and find a diagnosis for why her levels are abnormal. Charlotte's potassium levels have returned to normal due to the albuterol treatments. She continues to get IV saline to increase her sodium levels. Her sodium levels are returning to normal. She is still not eating and receiving IV TPN, so that they can get her blood levels to return to normal. The attending doctor met with us and is wonderful. She is going to be sending out lots of tests to different labs to try and find out what has caused Charlotte's potassium levels to be so high. Hopefully this week we will have more answers from all the blood work that has been sent out. Poor Charlotte looks like she has been in a bad car accident. She has splints on three out of four limbs to stabilize all of the lines and tubes that are giving her what she needs. However, Charlotte has settled in nicely to her new home at the University. The NICU is very different than the one at the Mercy Medical Center. The rooms are communal with several babies in each. Only 2 people are allowed to visit Charlotte at once, because it gets very crowded. We can't wait until we get to go back to Mercy!

The roller coaster

They call the NICU a roller coaster ride. It is not as fun as a roller coaster, that's for sure. Charlotte's platelets are low again today, and so she received another transfusion. A side effect of platelet transfusions is increased levels of potassium which is a preservative for the platelets. Today the nurses checked Charlotte's electrolytes and found that she had very high potassium and abnormal sodium levels. High potassium levels can cause heart problems. They sent an EKG of Charlotte's heart to the cardiologist, and it was normal. The neonatologist decided to stop Charlotte's feedings and start her back on TPN through an IV in her leg so that she does not get any more potassium. Charlotte is not happy that she does not get to eat, and so she has been very upset all day. It is the most difficult thing in the world to watch your daughter crying constantly but not be able to hold her. She is also getting saline to stabilize her sodium levels and albulterol treatments to bring down her levels of potassium. Apparently, albuterol, which is normally used as a medication for breathing, also helps the body absorb potassium. On the positive side, Charlotte is still breathing well with the use of the SiPap machine. Hopefully tomorrow will be an better day for her.

This is a present from our NICU nurses at Mercy Medical Center

Mommy daughter bonding

     Today Nana is visiting. Charlotte was so excited to see her nana, so the nurse took her out for a visit. Laura held Charlotte for 2 hours today! She was very comfortable and had no problems with her breathing. Charlotte is on SiPap today because after a day on the CPAP machine, she got tired. Her cries are getting stronger every day. Today the nurse was giving her a bath, and Charlotte hated it. She let out her loudest cry yet! This crying thing may loose it's luster soon.
     Not many people know this story, but when Charlotte was born, David and Laura thought she was going to be a boy. They had wanted a baby boy, because they thought it would be easier to raise a boy first. They had not found out Charlotte's sex prior to her birth. For 28 weeks, they had called Charlotte a boy. During the 5 days of bed rest, the doctors had informed them that premature girls statistically do much better than boys in the NICU. Laura quickly decided that she wanted a baby girl rather than a baby boy. When Charlotte was born, Laura was listening very closely to what the doctors were discussing, and she heard them say that they had delivered a baby girl. Laura told David she heard the doctors say they had a baby girl, and he was stunned. They were so happy to have a baby girl! Woody Allen once said, "If you want to hear God laugh, tell him your about your plans."

The PICC line is out!

What a busy week! We are continuing to make big strides. Charlotte got her PICC line out today! She was getting her TPN through the PICC line, but she is tolerating all of her meals by mouth, and so she will not need the PICC line anymore. This is great because any lines that she has can get easily infected, so the more tubes that can come out, the better. She is eating 15 milliliters or 1/2 ounce of milk every 3 hours. Also, they have added extra calories to her meals to help her grow. Charlotte weighs 1 lb 13 ounces now. Her bilirubin levels are still good, and so she does not need the blue lights. It is so nice to be able to see her eyes and interact with her more. In other big news, Charlotte had the ventilator tube removed today! She is on a CPAP machine to give a little bit of extra pressure to her breathing. This will help her lungs expand to take deeper breaths. Hopefully she can tolerate the CPAP machine a little longer this time. We heard a strong, distinct cry from Charlotte for the first time tonight. Now that the ventilator tube has been removed, we can hear Charlotte's tiny voice. We are enjoying every cry and every sound. Let's see how long that lasts.

Charlotte has a long arms, big hands, and big feet just like her mommy.

Sunshine and snuggles

     It was a sunny day in Baltimore today. The snow is melting, and Charlotte has finally warmed up to letting Laura hold her! Laura was able to hold her daughter for 45 minutes today. Charlotte seemed to love every minute if it. She kept nestling herself right into her chest. The skin to skin contact is amazing for mother daughter bonding. Laura has been on a high ever since she held her!
     Charlotte's is now eating 12 milliliters of milk every 3 hours. If she continues to tolerate the increased food, the nurses are going to take her PICC line out by the end of the week and allow her to eat entirely by mouth.
     Charlotte's room is covered in pictures that her cousins have painted. Her cousins have been spending a lot of time paining her beautiful pictures to let them know how much they love her. It really makes her room look bright and cheerful. Charlotte is blessed to be surrounded by a lot of family, friends, and most importantly, love!

Daddy's girl

The snow is continuing to come down in the city, and Charlotte is warm in her incubator. We want to jump in there with her! Charlotte is continuing to do really well. She is still bathing under the blue lights most of the day. She continues to breathe with the help of a ventilator, but the amount of assistance she receives is low. The nurses are monitoring her closely and changing her settings frequently to try and eventually wean her off it completely. She is continuing to lay on her stomach most of the day because it helps her breathe better. She looks very comfortable. She loves to curl her legs under her and lift her bottom straight up in the air. It is a very funny looking position. Last night, Charlotte received a platelet and blood transfusion because her levels were just a little bit low. Her tiny body is still too small to produce them on its own. The nurses have increased her tube feedings of milk to 10 milliliters every 3 hours, and they have also increased her amount of TPN. She gained 2 ounces and now weighs 1 pound 12.9 ounces! She is tolerating all of the nutrition really well. David was able to change her diaper for the first time last night. It's very exciting, for now. Uncle Adam, David's brother, and his wife, Aunt Kelly, came to visit all the way from North Carolina today. So, Charlotte wanted to come out and meet them. Luckily, today was David's day to hold his little girl. He was able to hold Charlotte for 45 minutes! She was so comfortable and had no problems with kangaroo care.

Diaper changes and spit up blankets

     Today our hearts are full. Laura was able to hold Charlotte for the second time! Her wonderful nurse, Deanna, thought it would be good to try Kangaroo care again. So, we put little Miss Charlotte's pink winter hat on and took her out into the real world. After about 5 minutes, she began to spit up the food she had just eaten all over Laura. I guess we should get used to this. Also, her oxygen levels started to drop. So, we placed her back in her incubator so she could relax. Because she is so tiny, the slightest bit of activity wears Charlotte out. So, we will have to take it slow with the Kangaroo care until she gets stronger. Those 5 minutes were the best 5 minutes of our week!

     Charlotte got tired yesterday after trying to breathe with the SiPap machine for a while, and she was burning too many calories by working so hard on breathing. So, she is using the ventilator again today until she can gain some weight and put on some muscle. Most preemies that are Charlotte's size will go off and on the ventilator several times before their lungs are strong enough to breathe on their own for good. The doctors are really trying to bulk our little girl up. She is eating 5 ml every 3 hours now. They say they will be increasing the amount of food she is eating throughout the week! 

     Laura was also able to change Charlotte's diaper for the first time today! Her diapers are teeny tiny, and she has lots of wires attached to her, so it made things a little tricky, but Laura handled it like a pro.
     In other news, the Duke Carolina game is this evening, and Charlotte is showing her support by wearing her UNC gear. GO HEELS!!!!

It's tummy time!

    Today was a big day for our tiny girl! Lines are coming out and her breathing is improving. The PICC line in Charlotte's leg is still in place and in a good position, so they took out the umbilical lines in her tummy. This is great because those lines can get easily infected. Also, Charlotte didn't need any blood or platelet transfusions today. This is a good sign because that means her body was able to maintain them on her own. The really big news is that Charlotte's breathing has been improving, and so she was able to have the ventilator tube removed! She is now on a SiPap machine. SiPap is used for babies who do not have a lot of energy and get tired quickly while trying to breathe on their own. SiPAP basically gives an extra "burst of air" to her breathing patten at a set rate. This afternoon, Charlotte was able to try laying on her tummy for the first time! The nurse explained that this position will help her breathe better and make her feel more comfortable. She seemed to like it!