Saturday, November 22, 2008

2nd Opinion

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

Sunday, November 16, 2008

When will it stop?

Iris threw up all of her 4.5 oz bottle this morning. It actually had the calorie count of a 6.5 oz bottle, but regardless, her stomach emptied, I am pretty sure, all of it. And, she just emptied close to 1/2 of her 11 a.m. bottle on me, which is sad since it is 20 minutes until she is due for her next bottle or 2.5 hours AFTER she ate. Her tummy doesn't seem to be emptying correctly to me.

I have to admit. I think I get more and more depressed with each and every vomiting episode with her. It pains me to think of how her esophagus, throat and nose feel, how they burn. I feel like crying now just at the thought of how many more times she will throw up today. I know that this seems like a small trivial thing in a lot of your eyes, but I see this every day in and out. I just feel bad for her. And I know that her health problems pale in comparison to those of others, but this is the reality I deal with. I don't mean to come off whiny, but I am just waiting and waiting for things to get easier for her, and they don't.

So, I have asked our occupational therapist to make some calls and see if we can get another pediatric gastroenterologist to look at Iris' file for a second opinion. I am waiting, but not all that patiently. It is driving me crazy. I just wonder if there is anything that can even be done. None of her reflux meds help, at all. I already took her off of one of them, and the second is to help her stomach empty. Obviously, it is NOT doing it's job.

Sorry to be whiny, I'll end with that.

Anna & The Kings

Thursday, November 13, 2008

53...I stand corrected. :)

The light in my eyes are a bit dimmer today. It is my mom's birthday. She's (would be) 53. It is still a hard thing to deal with every year, even if it has been almost 18 years since she has been gone. It's true, time really does fly by. And it keeps flying by faster and faster each year. Maybe that is something that comes with age. But anyway, Happy Birthday Mom, I love you.

Iris was weighed yesterday. She did gain, so I am pleased with that. She was up 5 oz, which puts her at 16 lbs 5 oz! I really hope that she can keep that kind of a steady gain up. I just get so flustered when she loses. She has not been throwing up any less though, which makes me so sad for her. I know that she is used to it, but her throat and nose cannot feel good. I don't know if I have ever said this before, but she really gets p.o.'d when it comes out of her nose. I can only imagine how that must burn. Poor girl. But she is soooo happy. She cracks me up. And she adores Lowden. Nothing will make her smile like he does. I must say, that really pleases me. The feeling is mutual, I know that Lowden will be the protective big brother when they are older.

I have had a cloud hanging over my head lately. Not sure why. I think it is just a combination of things that are bringing me down. And I feel really anxious at times, but then it will dispel like it was never there. I think that part of it is the thought of being all couped up for the winter, I'll get over it.

That is about all to report.

Anna & The Kings

Friday, November 7, 2008

Prayers Please

Well, many of you know that my niece, Ashley, had her baby boy. Caden. Well, yesterday, they noticed that Caden had labored breathing. To be safe, they transferred him to a bigger hospital. Now, of course my first worry, was that he had a heart condition. But, I believe that has been ruled out by the echo they did last night. So, now they are looking at his lungs as well as his brain activity.

I ask you all to send your prayers to Caden. He is a so new to the world and needs all the thoughts and prayers you can give him. And Ashley is scared. I can't imagine how scary that would be, being a young, first time mom. I know how scared I was with Iris, and she was my second child and I was already 26...with a little experience.

I don't talk a lot about God. I am sure that many of my family members wonder where I stand with Him. I am not very open about my relationship with God, as I feel that it is only mine and God's business. But I will say that I have my firm belief in Him....there is no way I would have gotten this far in life if I hadn't. But, I also have my beliefs of how I should be able to talk, pray & generally communicate with him. I know He hears me, no matter if it is in my car on my way to work, or in a Church. Which, I will be honest, and say that I have not regularly gone to Church for sometime. But it doesn't mean I don't believe. And I will say that since we found about Iris' congenital heart defect, I have talked to him a whole lot more.

Please talk to Him a lot, and ask him to guard Caden.

Love You All,

Anna & The Kings

Wednesday, November 5, 2008

Doesn't sit well

Well. Iris was weighed today. She only gained 1/2 oz in a full week. It is not sitting well with me at all. So, I AM going to get a second opinion on her diaphragm. I am just sick about this. We are even mixing her formula thicker, with more calories. I can only imagine what her weight would be if we weren't mixing it with more calories. Not good. She has a physical therapy appointment tomorrow, but not occupational therapy, because her therapist is gone until Monday. But, I am going to leave her a note to call me as soon as she can. She has some contacts in Chicago and I think it is time to get other opinions.

Iris also got her first synergist shot today. It is to prevent her from getting RSV during the winter season. It is a series of 6, with her last one in March. I think this is a great thing for her to get, especially with her cardiac issues.

I promise to update on any opinions I am able to get.

Lowden cracks me up. I know I have a lot to worry about when he starts driving. I know, I know. I am thinking way far ahead. But, I work in the insurance industry, I can't help it. So, on our way to the daycare this morning, I am doing the speed limit, rare, I know. There was a truck in front of me, so I really couldn't go much faster, but I did not think we were going slow anyway. Lowden tells me to "go faster." I told him I can't, there is a truck in front of us. He keeps saying it, man, I KNOW I am in trouble. I think I may have to make him get a job and make him pay his OWN insurance premium when he turns 16.....he isn't even 4 yet. I know. Close enough to it, but still. It was quite comical, I must say.

Oh, I became a Great Aunt today. YAY. But, it is weird! Congrats to Ashley and welcome Caden!!!