Thank You!

A blog that I follow religiously had a guest blogger that I also follow this week. It might have been over a year ago, but the feelings don't seem to leave. I thank Pierce's mom and Jack's mom for helping me the past year. And like the post says, I can't thank Lily's mom, Heather, for the past year.

New NICU mom

Play Weekend

First off can I get a big YIPEE for weight gain. In a week Luke gained a little over a half a pound...this is huge for us. He has been keeping down what we feed him and eating mostly by mouth. Usually once a day we have to tube him, but no complaints here. The best part, he isn't even taking the 6 ounces each feed they want since we have to work up to that point. Imagine the gain we could have when we finally meet that point. Hopefully he keeps gaining.

This morning we will be heading the pediatrician though. He has his first bought with granular tissue formation under his button. So he will need some silver nitrate to stop that. After Dr. Durham shows me today we can do it at home. I know he isn't going to like it when they tell me to give him Tylenol an hour before. ugh!

Luke got to have a play day on Saturday with his "little" cousin Quin. Jonathin and I had our first day to ourselves in what seems like months. There was no other place to take it but at the Notre Dame/Stanford game. We got soaked, but it was amazing! We all slept great that night. Luke was pooped from playing, and we were wore out from the rain.

We have an extra fur baby for a couple days this week. My mom went to Florida and my dad is in Indy for work leaving us with Jules. I think she is more active then our 3 dogs, cat, and Luke combined. She also snores worse than Jonathin. 

That is about it around here lately. Not too much to update, and that isn't a bad thing. Oh and GO IRISH!

Jordan

Week one

We've had some troubles to start tube feeding, but after a little tweaking I think we've figured it out. The doctors want Luke to take 6 ounces every 3 hours. Well, that is asking too much to begin with. So we took that down to 4 oz each 3 hours to begin with. This has stopped the vomiting. Luke will also take more by mouth this way. After this first week, I hope to increase it to 4.5 ounces and keep the same schedule as we go. His incisions have also healed up nice. Not completely healed, but were getting there. Luke is also getting comfortable with his tube. He has started to sleep on his side again and doesn't cry much when we pick him up. He has actually grabbed at it a couple times and it makes me hold my breathe. Either I'm worried he will pull it out or worse, cry out. His button still isn't healed all the way. It gets stuck during the day, and we clean it still and Luke doesn't mind that. Also, Luke has started sleeping better....thank The Lord. The first few days were hard. He is getting back to his normal sleeping times. He still wakes up a couple times throughout the night for his pacifier. You can see the energy coming back to Luke. Hopefully our increase will work this week.

Jordan

RSV revisited

Well it is that time of year again...flu season/rsv season. What does this mean? Well at the Molnar's it means isolation. I was really hoping to skip it this year, but lets be honest, Luke isn't ready. I think it will effect me more than him, like usual. Back to no trips out just because we can. This year we hope to do some family things that we weren't able to do last year, but it all depends on Luke. Last year it seemed a little easier to stay at home since we had the oxygen and the monitors, but now he is cord free and easier to transport. But Jonathin and I need to stay strong with it this year.

In light of the RSV and lung infections we have witnessed the past few months, I don't think we want to test it. Two preemies we know have had RSV and another NICU friend has had a horrible respiratory infection that has put her back on the ventilator. Last year we were able to get the RSV vaccine Synagis, not this year. The doctors believe that Luke could qualify, however we had to fight for it last year right out of the NICU. Also it is $3000 shot each month for 5 months. Even with our insurance it is a $400 deductible each month....hate to say it we are not made of money. This just adds to our decision for isolation.

So we are just asking a couple favors if you come to visit Luke.

1. Please be up to date on your flu shot and pertussis. If you got the pertussis shot last year, you are still good for this year.

2. Please don't visit if you or someone around you has been feeling under the weather for a day or two. This is just covering us, just in case.

3. Please wash your hands and Purell them before touching or playing with Luke. This isn't just at our house either. Please don't be afraid to ask us either, because we have a bottle of hand sanitizer either on a stroller or in the diaper bag at all times. We've learned since his birth to constantly refresh our hands throughout the day.

4. Please remove your shoes when you come in our house. This is just courtesy to keep germs down around here. I mean think of all you can bring with you from throughout your day.

Hope that you can understand our wants and needs for Luke. We very much want to keep him out of the hospital, especially with the new tube. One less thing for us to worry about. If all goes well this should be our last flu season in isolation.

In other news, Luke is doing well with the feeding tube. We are still trying to figure out the amounts and times. His tummy needs to stretch and get used to it. He doesn't seem to mind the feeds when we tube him, it doesn't always settle with him later on though. The doctors don't seem too worried since it only happens once a day. So were still testing the water. He had his sutures removed today and did great. Now we can clean around the tube a little easier. I don't know which one of us will be happier for Friday...bath day. This kid is starting to put off a stench that we can't cover with lotion much longer. I don't know how we did the wipe down baths for 3 months in the NICU.

Also, Luke will be starting speech therapy soon. First Steps has added that to our schedule of weekly activities. This will help with his feeding and his speech. They don't want to wait too long before catching him up with his communication. We don't know when that will start, but hopefully within the next month.

That seems to catch everyone up on what is going on around here. Hope everyone has a wonderful gloomy Wednesday. It is good day to read, or do some school work around here if I can Luke on board.

Jordan

Tube Questions...help?

Hey Tubie Mom' s, I just have a few questions if you have the time. I would rather hear from you that have experience than the doctors....sorry medical professionals.

How long did it take for your kiddos to get used to the feeds. Luke's stomach still doesn't allow for the 5 feeds of 6oz  every 3 hours. He just has slow motility and were sitting at 4 feeds as of now. Also, the past  two nights he has gotten sick an hour or more after his last feed and throws it up...and mean all that is there. He is pooping, so I know it is going through him, but still not getting there.

How do you add baby food to the equation? The doctors just want formula, but he loves his food and I don't want to lose what he likes and knows how to eat.

Also, how do you give it? Luke has a wandering hand that likes to grab the tube and then hurts himself. I'm trying to balance giving it slowly, water to flush, and watching his quick reflexes...not always working out.

How fast do you give it? I feel like I'm taking my time, but then its tops going all together. I don't want to make him sick. He doesn't seem to mind it, but I don't want to do it too fast.

I knows lot is trial by error, but any useful tips would be great at this point. Thanks in advance