Little crazy to think about – today is my due date. I look down at my sweet girl and can’t believe that she should just now be here. On the flip side of that, I can’t imagine still be pregnant… Yikes. I can’t imagine how miserable that would be. Hats off to those women that make it to 40 weeks (or past – holy cow). It’s something that I (and my sister) can’t really relate to. Our family jokes that the Crain girls are just really impatient. Apparently we have and always will do things when we want and how we want! 🙂
So, things have been a bit crazy around here. My days are filled with trying to keep Anna calm during and between feedings. I’ve also been the official chauffer for all of the doctor visits and tests. I’ll gladly wear that hat! Anna had an echocardiogram done last Friday to determine if her heart murmur was ‘innocent’ or due to something bigger. The results came back yesterday – her heart looks completely normal. Thank you for answered prayers. My scans for kidney stones came back clean. Woohoo!! I did test positive for a urinary tract infection. So, I’m popping some antibiotics when I have the time. I’ll take a UTI, gladly!
Last week I started tracking when Anna was eating, how much she was eating, wet and dirty diapers, when she is fussy, and when she spits up/throws up. The engineer in me decided that some hard data would be helpful. Turns out it was (I love it when I’m right…). Anna’s been throwing up at least once a day for over a week now. On top of that, she wasn’t eating as much. She would completely refuse to eat because it hurt. It’s miserable to watch and know you can’t make her feel better.
I have been in regular contact with her pediatrician to let him know that her reflux was getting worse. Dr. Schlansky decided to send her to a pediatric GI for evaluation. I think he went down his list of things to try and then washed his hands of us. I contacted the GI and the earliest she could be seen was April 5th. That was two weeks that we were supposed to sit and wait. Two weeks that Anna is in pain, eating less, and spitting up more. I was extremely concerned that she was going to stop growing and that’s the last thing a preemie needs to do. I contacted every pediatric GI in the St. Louis area and the one in Cape. April 5th was the earliest I could find. It was to the point that I was going to start calling doctors in Columbia, Missouri. It’s a helpless feeling. I’m desperate to help her, but I keep hitting these roadblocks. I have to work with other people’s schedules and wait on them. We’ve already discussed that I’m not the most patient person around.
I called her pediatrician the next morning and set up an appointment for him to see her that day. I refused to let her continue on this trend. Dr. Schlansky had a nurse call and inform me that there is nothing they can do and that we have to wait to see the GI. Well, my mama bear claws came out. I explained to them that she isn’t eating as much and that we need to at least try something else during the 2 weeks we are waiting. At that point he ‘allowed’ her to come in. I get the impression that he thinks I’m being dramatic. Something tells me I will be finding a new pediatrician soon. Anna was weighed. She had gained 2.5 ounces in 5 days. The 9 days before that, she had gained 16 ounces. (Anna is now 7lb 14.5 oz!) I was concerned because to me, that’s a large decrease based on the previous gain. The doctor wasn’t. He was hesitant to start her on a PPI (proton pump inhibitor) because of her young gestational age. It’s a stronger medicine that shuts off production of stomach acid and he wasn’t sure it was safe – at least he is not in the practice of giving PPIs to almost 40 week old babies. Dr. Schlansky was going to contact the GI and see if it was alright during lunch.
Shortly after, I get a call from the GI’s office. The nice lady explains that they had a cancellation for that afternoon and wanted to know if I would be willing to bring Anna in. Before she even told me the time I blurted out ‘YES! We’ll be there!’. We went to the appointment and in walks our light at the end of the tunnel in the form of Dr. Rosenblum. He listened to her symptoms and agreed that it sounded like reflux. All of the symptoms were concurrent with reflux except for the vomiting. He was a little concerned that the vomiting could be the result of a structural malformation. He ordered an upper GI. While he was examining Anna he tested some of her stool for blood. It was positive. Validation in the most unsatisfying way. Basically the stomach acid that is being brought up with formula is causing Anna’s esophagus to bleed. It makes me sick thinking about it. No wonder she is refusing to eat. It’s causing her throat to bleed. The GI doc has stopped the Pepcid and put her on Prevacid (it’s a PPI). We are still using the Nutramigen and rice cereal. Dr. Rosenblum would like to try and get her off of the Nutramigen because it’s really expensive and formula changes don’t really help with stomach acid production or reflux. That will be down the road because he only wants to change one factor at a time. God love the scientific process!
I’m so thankful that the GI called us when they had the opening. He is determined to find the solution to this. It’s going to be a matter of finding the right combination of formula, medicine, and practices that works for Anna. I’m just glad we are trying something else. Sticking your head in the sand is never the answer.
I took her to Children’s Hospital this morning for the upper GI. The x-ray technician asked me if there was a chance I could be pregnant. I told her to watch her mouth. Can you even imagine?? I can’t. I had to feed Anna a bottle of what looked like Elmer’s glue while they took x-rays of her chest and belly. She was so good during the test! She was just looking around taking it all in. She’s getting more alert everyday! The radiologist that was taking the pictures said everything looked normal. So, it seems that the vomiting is due to reflux. That’s good news! Anna goes back to the GI in one week. He wants to keep a close eye on her growth and symptoms.
An interesting tidbit from the GI. He thinks burping a baby is overrated. We’ve been burping every ounce (common advice given to parents of a ‘refluxer’). The GI is having us feed Anna smaller amounts more frequently and only burping at the end. Makes sense. Burping brings up acid which irritates her throat. Then she refuses to eat and is extremely fussy for the remainder of the bottle. I’m willing to try anything!
The biggest thing I’ve learned through this is that you have to be your child’s advocate. They can’t speak for themselves, so you have to. Even if that means pushing doctors for answers and solutions. The doctors can think whatever they want about you. You have to do what’s right for your child.