Wednesday, December 23, 2009


Dylan finally came home on December 21, 2009. It was a greaeaeaeaeat day!...Long time coming:) It was the most amazing Christmas because we got the best present ever...having our little boy home. It was alittle sad saying bye to all the nurses we became so close with over the past few months. They really helped us get through such a difficult time. We will be sure to take Dylan back to visit them when he gets alittle stronger. One of his nurses made the most amazing scrapbook for us. She did a photo shoot with him in his Haloween costume and one in a santa hat and not to mention all the ones that were taken throughout the past few months...Dylan wide awake at 3am, first bath, first bottle>etc. Another one of his nurses made him the memory beads which were two long strands of acclomplishments.

This is the first opportunity I have had to write because I have been getting adjusted to having him home. I forgot what it is like to live on a hour or so of sleep a night and on top of that having a wild toddler. By the time I warm his milk, allow an hour to pass for the feeding, change him, clean the pump, and then I have to pump-it is time to do it all over again. He still needs to eat every three hours. Although I am not sleeping through the night, Dylan is! He is still putting on weight which is great because that was a big problem he had which is why he still needs to eat every three hours for awhile.

We did not take Dylan out for Christmas just because we wanted him to get adjusted to being home and we did not want to expose him to any sick people. It would be very dangerous if he gets sick because he could end up right back in the hospital and on a ventilator. We are pretty much treating our house with the same rules as the hospital, at least until the spring.

Brady absolutely loves his little brother and is a big help with him. He has been demanding a little more attention lately and we are making sure to give it to him.

I have been slowly giving him 12cc of milk a day in a bottle and he has been pretty good about drinking it. For some reason though he has not wanted to nurse. It is going to be a long process to get him off the gtube but I have faith that it will come sooner then later.

Thank you all for your thoughts and prayers...God Bless!

Friday, December 18, 2009


December 17, 2009

So we got the news that we can bring Dylan home on Monday. We couldn't be happier...but we are also a little nervous. Life is going to start feeling normal now and we can begin to be a real family now, yayy!

Monday, December 14, 2009


I forgot a huge update...Dylan is completely on room air. He no longer needs the oxygen and has been doing great with it, yayyyy! It was the best thing seeing his face completely free of everything. Too cute!!:)

December 14, 2009

Dylan has been doing ok since his surgery. LOTS of spit ups and throw ups which they are saying is normal after surgery. He also scares us when he gets upset and begins to cry because he will hold his breath and turn blue till he lets it out. This happens a few times a day.

The doctors are thinking by next week Dylan will be coming home but these things need to get a little better before they will release him. And to be honest we don't want him to come home until he is 100% ready.

Thank you all for your support and prayers! God Bless!

Thursday, December 10, 2009

G Tube

December 10, 2009

Today Dylan got his g tube surgery. He was wheeled down to the second floor in an incubator that he hardly fit in:) He was pretty confused since he hasn't seen anything besides his room in over two months. He was really awake in pre-op for over an hour, he was edible. I just wanted to snatch him and run.
He needed to be reintubated because of the anaesthesia since it would slow his breathing down. They did that after they put him to sleep so it wasn't too uncomfortable. After an hour the doctor came out and said the surgery was a success and they were going to wheel him back to his room. He was actually awake which was surprising because of all the medication. It was VERY hard seeing him intubated again and you could tell he wasn't too happy about it either.
About five hours after surgery the doctors decided to take him off the ventilator because all his respirator numbers were looking great and he was breathing over the ventilator which gave them the push to extubate. As soon as they did he crashed!...He stopped breathing and his heart rate was plummeting quickly. The doctors started to bag him immediately to revive him (pretty much meaning they did cpr) and they were about to call cardio up when he starting responding. I guess he just needed a jump start and to keep everyone on there feet. It was very frightening to see that happen to your child right in front of your eyes. I think Sal and I lost 5 years of our life from that and we also needed a jump start to begin breathing again. After that the doctors and nurses stuck around for awhile to make sure he was stable again, and he was!...He started to do great but I still couldn't leave him. I stayed till 8 tonight until he was dressed and back in his crib and ready to sleep. His nurse Carol was a Godsend today and kept us sane. We are so blessed to have such wonderful nurses to help us get through these difficult times. I know it is there job but they really do go above and beyond for there patients, especially for Dylan because they have built a strong connection with is hard not too:) So after a long day we thank God for making it a successful one!!

Thank you all for your continued thoughts and prayers. God Bless!

Saturday, December 5, 2009

December 9, 2009

So we decided yesterday that we are going to go ahead with the g tube. A g tube is basically a tube that is surgically inserted into his stomach that will allow us to feed him through.

Things moved along very quickly because the surgery is scheduled for tomorrow. I guess its better so we don't have to keep thinking about it and we can begin to move forward. This way we don't have to worry if he is taking in enough food and we can slowly work on his oral feeds without stressing him out too much. He does not yet have the strength to eat enough food and hasn't yet even been able to try. When his oral feeds are doing well the gtube can get taken out, well it will close on its own. The doctors said the only thing holding him back from coming home was the feeding situation. We are now hoping we will be abl to bring him home soon.

He will have to be re intubated again which is horrible but necessary and he will hopefully be off of it fairly quickly. His casts were removed on Monday so he could get up to date on his immunizations because they administer them in the muscle of the thigh. They were going to recast today but the dr thought that he didn't want to put him under too much stress so we will probably put them back on next week.

I will keep you all posted tomorrow. Please say an extra prayer for Dylan tonight.

Thanks for your support and prayers. God Bless.

Non Nutritional Feeds

December 5, 2009

Yesterday was a good day!...I was able to do non nutritional feeds which means I had to pump but then was able to nurse Dylan. He did better then expected, he latched on pretty well and sucked for a good ten minutes. He was able to get some milk because your body produces milk constantly but its not an overwhelming amount that would cause him to choke.

Today I was able to try again...two times. He did really well again!! So we are really happy about that.

He is also on 30z of milk every three hours and is almost 10 pounds. We couldn't be happier with all his progress. Although the doctors still want to sit and meet with us to discuss the option of a g tube. Its something we are contemplating and don't know which decision to make since he hasn't been given an opportunity to really feed (suck and swallow). I guess when that happens we may have a better idea of what to do.

Thank you for all your support and prayers. God Bless.

Thursday, December 3, 2009

December 3, 2009

I wasn't able to visit Dylan for 4 days. I was having some serious Dylan withdrawals!!

He got his new casts on Monday. His feet are already starting to look much better, hopefully he only needs 2 more weeks of casting then a small surgery to release his achilles tendon and two more weeks of casting after that.

He is starting to gain a little more weight since he is now on 86cc every three hours and its being fed gastricly through a nasal tube. They are administering it over an hour and giving him a two hour break. They add some human milk fortifier to fatten up the milk plus we are only giving him my hindmilk (which is the fatty part of my breastmilk).

Yesterday the occupational therapist was able to start some tastes. She pretty much puts some breastmilk on the pacifier to see how well he will suck and swallow. He is doing pretty good but she thinks he still doesn't have a strong gag reflex or the stamina to suck for a extended period of time. Hopefully next week he will be given an opportunity to try. The dr's are trying to convince us to place a g tube but we are not yet ready to make that decision. We think he should at least be given a chance to feed before putting him through a surgery.

Thanks for all your support and prayers. God Bless.