Sunday, July 17, 2011

Quick Update

As Katie mentioned in the last post, Edward had a barium swallow study completed on Thursday.  Fortunately, the swallow study was completely normal.  At the same time, a normal study did not do much to shed light on our current feeding issues.  Edward continues to gain weight, just at a rate slower than he should.  He is still fighting most of his bottles, so we are set to see a pediatric gastroenterologist on Thursday.  He has finished his course of empiric antibiotics and remains on prevacid and zantac (two medications to help treat reflux).  Hopefully, the appointment later this week will bring some answers!  Here are some recent pictures of the little man.

As you can see, he hardly has anything with which to play.

Wednesday, July 6, 2011

Formula for...Success?

Happy 4th of…..

Wait a minute…. It’s July? Oh. My. Word. Where has the time gone? We have been riding to roller coaster of Edward ‘s home life, which we decided is just like our ride in the NICU, up down, up down…..and now hopefully up? The month of June consisted of at least 7 trips to the pediatrician, 5 different prescriptions, 3 different formulas, and a partridge in a pear tree. Well at this rate, it will be Christmas before we know it and I will still be in my pajamas. Edward started out the month of June eating like hungry caterpillar. As time went on, his weight gain dwindled until he actually stopped gaining weight, and at one point, lost weight. This loss, though, was no surprise to us because every single bottle we tried to give him became an all out war at home. He would be so hungry take few sucks, drink an ounce and then scream, cry, arch his back, swing his arms in protest and try to wiggle himself out of our arms. Our sweet happy boy turned into a little maniac every time we tried to feed him. He actually whacked himself in the face one day when he was flailing his arms, and then after that cry fest, he refused to drink anything at all.

Well, upon first exam, Edward had thrush. Thrush is a fungal infection of the mouth. It is a common infection in the very very young (babies), the very very old, and those with weakened immune systems. Everyone has a small amount of this fungus in their mouths and your body keeps it in check. When your immune system can not keep the organism in check, it takes over and grows out of control, resulting in a white tongue, and sores on the roof and gums in the mouth. Many babies do not require medication, unless it causes the baby to resist eating – which would be the case for Edward. We were given a 10-day course of Nystatin. Great, sticky, yellow, gross stuff to squirt into his mouth – 3 times a day! That was fun. The first few days Edward perked up and started drinking again. High fives all around, we have our little guy back! He started drinking 3 oz again without a problem, and he even started drinking more than that sometimes. With only a day left of the Nystatin we noticed Edward started fighting us again. Slowly he was turning back into the little angry maniac. Was this a fluke? He still had the white tongue. Was the thrush not going away? The recommendation had been to boil all of the bottles, nipples, pacifiers he used each day to kill the thrush. We went a step further by throwing everything out and buying brand new stuff. We were going to Babies-R-Us more than we were going to the grocery store. Still it didn’t work… back to the doctor! We were given a second medication to treat the thrush, a stronger mediation. After a few days of Flucanozole (only to be given 1x a day- whew), Edward perked up again! Hello 3 oz bottles! He was drinking like a champ, and we were rejoicing again! Wouldn’t you know it, just as we were finishing up the last of 10 days of Flucanozole he started to fight us again. We couldn’t believe it. Back to the doctors! It must be reflux now because the thrush is gone, start the Prevacid. Oh, and this medication is a fun one to give to a newborn. Take a solutab and dissolve it in 3-4 ml of water, draw it up in a syringe, and shoot it into his mouth making sure he doesn’t spit out the nasty granules. Oh, and do it 30 minutes before giving a bottle which subsequently leads to him not actually wanting to take the stupid bottle. After five days on the Prevacid with no improvement we were forced to go back to the doctor. This time, another pediatrician thought, wow, something is really bothering him. She watched Mike try to feed him and saw him push Mike away, cry, arch his back (Thank you Edward for actually doing that, because if you got stage fright and didn’t fight the bottle, we would have been known as the craziest parents in the office). She also thought that besides the reflux, his breathing was terrible. His lungs sounded clear but he sounded junky. He always was a heavy breather, but his wheezing had gotten out of control. Could he have sinusitis? Who knows? So now Edward is on Prevacid (1x a day) and Zantac (2x a day) for reflux and amoxicillin (2x a day) for a possible sinus infection. So out of the 7 feedings he gets a day, Edward has to take medicine before 5 of them…. Awesome. The pediatrician also ordered a swallow study to be done at the radiology department at UVA hospital. She wants to make sure everything is anatomically in place for him to be swallowing and eating. No, she said, his fighting us, is just not normal.

We apologize for not keeping up with the blog, but you can tell why. Not being able to feed to the little guy has been frustrating and heavy on our hearts. The worst part would be that as soon as we would stop trying to feed him, he would turn back into his happy self, smiling and playing with us. Edward, do you still love us? No wonder he didn’t want to eat…. his tongue was hurting from the thrush, the reflux was causing burning in his tummy and throat, and the sinus infection was making it hard for him to breath. Duh! If only he could talk and tell us what is wrong! Hopefully the swallow study will show that everything is working correctly and the triple threat of medicine will start to kick in. Goodbye June, I hate you.