The lungs are healing!

December has started out on a good note. Let's hope we can keep it going! Since Charlotte has been home from the hospital, she has been doing really well! She is 14 lbs now and gaining weight really well. We had a follow up with her GI doctor, and she is really impressed about how well Charlotte is doing with the tube placed back in her stomach. Because Charlotte is continuously fed for 24 hours, she has an overgrowth of bacteria in her belly due to the high PH level, and so the GI doctor has placed her on a medication called Flagyl to help her stomach get rid of all the bacteria until she can tolerate normal, large volume meals every three hours. It is not erythromycin, and it seems to be working well! We will start compressing her meals down slowly until she tolerates a large meal every three hours. We also had a follow up with her lung doctor, and they have decided to allow Charlotte to take her oxygen off for 4 hours at a time during the day! This is a huge burden lifted because now we don't have to lug the oxygen tank with us to doctors appointments and on walks. Less tubes equals more freedom. Charlotte looks so much healthier and older without the breathing tube on her face. Also, the lung doctor decided that Charlotte does not need to take her diuretic medicine anymore. This medicine was helping Charlotte get rid of all the fluid in her body that was staying in her heart and lungs. Now that her heart and lungs have healed, they don't see any fluid at all. Diuretics can cause stomach cramping, abdominal pain, and vomiting, so this is another step in the right direction for her stomach!  Charlottes red blood cell count is also improving. Anemia (low red blood cell counts) can happen for a long time when a baby is born prematurely. Now that Charlotte is older, she is making red blood cells well, and she hasn't required any red blood cell transfusions. She had her 9 month pediatrician follow up, and the pediatrician was so impressed about how well she's doing. In other exciting news, Charlotte was able to meet Santa for the first time! Santa was visiting the Baltimore Inner Harbor, and she got her picture taken with Santa and her family. 

Erythromycin: the devil's drug

     What a horrible month. November was possibly the most trying month we have had since Charlotte came home from the NICU. We spent most of it, including Thanksgiving, in the hospital. Her vomiting continued to worsen, and we decided to drive all the way to the Children's Hospital of Philadelphia ER to get a second opinion. They performed several tests and could not find a reason for the vomiting either. So, back at square one, we decided to stop one of the medicines that Charlotte takes for motility of her gut: erythromycin. This medicine was supposed to be used to help Charotte's bowels work more efficiently. Premature children often have a diagnosis called "delayed gastric emptying" because their bowels don't work as well as a full term baby. A gastric emptying test is normally performed to confirm whether a baby has this diagnosis or not. There had never been a study done that showed that Charlotte had delayed gastric emptying at all. We had spoken to our GI physician at Maryland about stopping the medicine a few weeks ago because we suspected it was making Charlotte sick to her stomach. We tried to stop the medicine for a day, but Charlotte continued to vomit. After speaking with Laura's mom who is a nurse, she advised that the medicine does often make people sick to their stomach and it needs to be stopped for several days in order for it to truly be expelled from the body completely. So, we stopped the medicine for several days, and the vomiting lessened. Also during this time, Charlotte was found to have severe anemia which means her red blood cell count was very low. A normal level is 10-12. Charlotte was 4.3. The hematologists suspected a GI bleed. During the hospital stays, they scoped Charlotte's entire GI tract to see if they could find a source for bleeding. They did not find an active bleed, but they think that there had been a bleed somewhere that resolved itself because they did find blood in Charlotte's stool. So, Charlotte received several units of blood, and ever since, her red blood cell count has been stable. Because her GI issues have been improving, they moved her GJ tube back to a g-tube which means she is now fed into her stomach. Next Monday we will start to compress her feedings into bolus feeds which means she will get her food in shorter periods of time and she will be able to be off of the g tube!
     During this time period our kidney doctor attempted to fix her kidney reflux with a surgery. They were unable to do the surgery because her urethra was too small to enter with a scope. Therefore, they left a catheter in her in order to stretch her urethra. Well, Charlotte poops all the time because she is fed continuously by a g-tube. Therefore, the catheter was constantly contaminated and caused an infection, and we went back to the hospital for more antibiotics.
     The hematologists also performed a bone marrow aspiration to see how Charlotte's bone marrow is working. They found that her red and white blood cell lines are working normally. She continues to require transfusions for her platelets.
     Charlotte had her sleep study and is able to use her oxygen at 1/4 liter at night which is half of what we have been normally using. We see the pulmonologist next week. Hopefully they will let Charlotte take off the oxygen for good during the day.
      The good news is that for the past two weeks, Charlotte has not vomited at all. Also, we have made another huge change. One of Laura's managers at the nursing homes decided to generously donate her breast milk to us. Laura was unable to produce after 3 months due to worsening depression from Charlotte's illnesses. Since stopping the erythromycin and using breast milk instead of formula, Charlotte has had a huge turn around. She is able to do tummy time more often. She is able to sit better because she can put pressure on her belly. She cries less. It has been amazing. Hopefully her GI problems continue to steadily improve. November has been a long month for the Harris family. Still, Charlotte is 13 lbs 4 ounces and gaining steadily! Here's hoping December is a better month!