Her throwing up is getting worse. She never used to throw up after her 5 pm feeding, she does now, and it is usually most of the feeding. Just like the other feedings. At this point, the only time she doesn't throw up, is her last feeding, when it is bedtime. But she even will wake up and throw up at THAT feeding as well now. I am at a loss.
I took her to the doctor on Thursday to get a referral for a second opinion. So, we are scheduled to go and see Dr. Machnowski in Cedar Rapids on December 4th. It can't come soon enough! In the mean time, I have upped her dosage of Reglan (which helps her stomach empty quicker) from .6 mL before every feeding to 1 mL before every feeding. Today was the first time I have tried it, and we will find out the results.
Wednesday was the breaking point for me. Iris' home visiting nurse that checks her out every week at daycare called me early on Wednesday, usually she calls me later in the day. I knew I should be worried, when SHE was worried. "K" said that Iris was still getting her first feeding when she got there, but Iris looked miserable. So, she stopped the feeding and unhooked Iris. She let Iris' tube open to drain some of the formula from her tummy, to keep her from throwing up, and started her assessment. For her assessment, she weighs Iris, checks her heart rate, and respirations. She also checks her blood oxygen saturation. Her heart rate and respirations were elevated, enough to be concerned. Iris' normal heart rate sits around 136 or so, she was at 200 and her normal respirations are at 48, but she was at 64. When I got the call at work, we will just say, I was a bit frantic. If she was like this in the morning, there is no doubt in my mind, that she is like this more than in the morning. Like, several times per day, it CAN'T be good for her heart. The nurse agreed.
I made a bunch of calls, and that is what led us to her family doctor on Thursday, and with an appointment with Dr. M on Dec 4th. He is the pediatric gastroenterologist in Cedar Rapids. We also have an order to go and get another x-ray before our followup appointment with the family doctor, also on the 4th. This time it is to be of her tummy though. We are looking for any anatomical abnormalities, which have not been found in the past. Well, nothing has been found in the past, but something is not right with her little body.
I must say, I am so relieved to have found a couple of mothers among the ohs (open heart surgery) parents who have or are dealing with the same things I am dealing with. "A's" daughter is now 4 1/2 years old, and just got her g-tube removed this last February. She still has to feed her daughter 4 cans of pediasure a day, with a syringe in the mouth, as she said it is not worth the fight to get her daughter to drink from a cup. Trust me, this is harder than any of you can imagine, unless you have been down this road. And "H" is another mom I have found. Her daughter just had her OHS approximately 2 weeks ago and is having problems eating. I hope that I can be of some support to her through all of this, mostly, I pray that her daughter will come out of it, and not develop all of Iris' aversions.
ANYWAY!!! Thanksgiving is almost here, and that makes me so happy. It is my MOST favorite holiday, and I must say, I have SO much to be thankful for. And of course, I can't wait for the food, bring on the stuffing and sweet potatoes! haha, there goes my low carb diet for a day!
I will keep you all posted, and as always, I am copying and pasting this to Carepages.
By the way, Caden is home and Ashley couldn't be happier!
Love you all,
Anna & The Kings