Kayden

Thursday while I was at the ILCS retreat, Kayden had a doctor's appointment a fellow up because Dara was breastfeeding, he wasn't gaining his weight back and we started bottle feeding Kayden. We wasn't doing very well with the formula and they had us change formula. He started gaining weight but was still throwing up a lot. At the doctor's appointment they told Dara that his newborn blood test screening came back with abnormal results. They told Dara that Kayden needed to see a baby doctor. She couldn't get Kayden in until the following Monday. They told Dara that Kayden test showed that he has galactosemia.

Dara called me while we (the retreat group) was at the safari and told me what the doctor said. I told her to get on line and find out as much as she could about it. We talked and texted back several time during the safari and during the retreat. I had a little break down, but thank goodness Coleen was there to support me. I kept telling Dara I would come home right now!!! I felt like I needed to go and Coleen was so supportive and told me she would go in a heartbeat if I wanted to head back home.

That night at the hotel I got on the hotel's computer to find out what I could. I was shocked!!! A lot of babies dye at 2 weeks of age from this. There are 3 test that need to be done. I was freaking out!!! When Katie arrived I told her what was going on, because I knew she would understand.

I later told the rest of the girls at the retreat when we were at the tea room. Everyone was so supportive. Thanks so much!

He are a few of the text messages from Dara...

Me "Do we need to have any test done before the doctor's appointment Monday."

Dara "No I asked if there was anything I needed to do before Monday and they said no and I looked up what I think the doctor said he had and its bad. It can cause blindness severe mental retardation growth deficiency and death if untreated! But only 1 in 60K or 80K babies have it

Me "I am coming home!!!"

Dara "No it's ok, cuz if that's what it is then there are lots of less severe forms that essentially don't cause any damage but can be picked up on a newborn screening"

Me (after I was online at the hotel computer) "Tell me again everything the doctor said"

Dara "OK he said that one of the newborn screens came back slightly abnormal. So I asked about it and he told me what it was and if it went untreated it could cause brain damage. The he said that he was gonna get me an appointment with the pediatrician at the hospital as soon as he could. They tried to get us in later that day since the doctor wouldn't be there Friday but they couldn't. So next best was Monday and we got that."

Me "Are you sure you don't want me to come home?"

Dara "Yes, you have fun while you can and we'll worry about things if we need to."

Me "Are you sure, I can leave right now!"

Dara "Mom even if we end up with bad news there is nothing we can do right now. And since his formula has no galactose then we won't have to worry about what he eats till we start him on real food."

Me "You are right."

Dara "Of course I'm always right :) plus he seems like a normal functioning baby so if he does have it then I'm pretty sure we caught it before it caused any damage." :D

Dara "LOLz yea it comes with being as amazing as I am :P I'll ttyl love u"

I stayed at the retreat and arrived home Monday morning about 1 am.

Kayden got up just a little after I got home and I held him forever!!!

Monday we went to see the pediatrician and she looked him over and weighed him. He had gained 2 oz (8 lbs 2 oz) and an inch since his last measurement. The doctor said she really liked his color and was looking good. Was happy that he is growning and is now gaining weight. To keep doing what we are doing. She the pediatrician did not want to say that Kayden had galactosemia, but just that the blood screening was abnormal and she wanted us to go to Riley's Hospital. But that evening we called the doctor's office to find out about the appointment at Riley's and she said that Riley's wanted another bleed test done, before they made an appointment.

We took Kayden the next day to our local hospital and had the blood test done. We are still waiting on results.