Friday, November 27, 2009

November 27, 2009

November 27, 2009

Today they changed his feeding schedule again...the milk would be given over an hour time span and then he would be given a two hour break before starting that process over again. The hope is to get him used to eating a large amount and getting a break like most babies are used too. Today I was not able to go to the hospital because I have a cold and they are very strict not too allow anyone with any flu like symptoms in the hospital and I especially wouldn't want to take the chance and get Dylan sick. They are also not allowing children under 5 in the hospital, so Brady is not able to see his brother anymore. He would get so excited to see him and right when we would walk into the hospital he would start chanting deedee(that's how he says Dylan)...toooo cute!

So I just called to check on him and they said he was not tolerating his feeds and he threw up so they changed him back to giving him only an hour break. Maybe he just needed some more time to adjust to having such a large volume of milk in his stomach at once. To think last week he wasn't even tolerating the milk gastricly.

Thank you for your support and prayers. God Bless.

Thursday, November 26, 2009

Thansgiving Day

November 26,

Today is Thanksgiving and we really do have a lot to be thankful for but our days don't' feel complete with Dylan not home with us. Hopefully we are moving on the right track to finally bringing him home.

Dylan was on continuous feeds and yesterday night they decided to switch him over to feeds over a two hour span and giving him a break for an hour. We are hoping he will gain more weight like this because the doctors are worried that he is not gaining enough.

Thank you for you support and prayers. God Bless!

Tuesday, November 24, 2009

Gastric Feeds

November 24, 2009

The doctors decided to give Dylan a chance with gastric feeds. It has been going great so spit ups and everything is moving along nicely. We are thrilled and hope this will lead to him finally taking a bottle or just nursing. They are thinking he wont be able to suck and swallow properly and even if he is able to they don't think he will have the strength to take in the amount necessary for weight gain. So therefor a gtube would need to be placed in the stomach. We hope and pray this is not something that will be needed.

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

First Cast

November 23, 2009

Dylan got his first set of casts put on today to correct his clubfeet. He was such a champ and did not cry once. I hope it wont be too hard on him because he has been so used to having his legs and feet free. Where as Brady did not get too long to become used to it since he was casted 6 hours after he was born. Dr. Seteserri will come out once a week on Mondays and continue to cast until his feet are in the correct position.

He is still going strong with his breathing so the next move will be to move the feeding tube back to his stomach. He has been throwing up a little so we are hoping this does not delay the doctors from trying to move the tube up for gastric feeds. The concern would be his aspirating and the fluid getting int his lungs and it causing pneumonia. We are praying that that wont happen and that he will be able to digest the food now because this will bring us just a little bit closer to bringing him home.

He also sat in a bouncy seat for the first time and tolerated it pretty well. At least he can get a different view of his room now which is the only place he has seen in his 6 and a half weeks of life.

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

First Bath

Today Dylan got his first bath, yayyy!!

Dylan got his central line taken out the other day so I took a bathtub in and he got his first bath on November 19. He loved it, he seemed a little confused about what was going on but did not make a sound the whole time. He has such a personality already and is very vocal about what he wants. When his diaper is wet he will let us know immediately...which is very unlike his older brother:) When his pacifier falls out or when his mobile stops he will make his lion cry heard, lol. I still love to hear him cry since I havent heard him cry in weeks and when I did it was only for two days. Its the small things that we took for granted before and we will appreciate every moment from here on out with both our boys.

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

Thursday, November 19, 2009

Off cpap

November 16, 2009

Dylan has been extubated for one week now. So far, everything has been looking great from a breathing perspective. The doctors feel like he is strong enough to come off of the cpap and only use a nasule cannual. This is a huge step toward him breathing completely on his own.

Thank you for your continued prayers.

Saturday, November 14, 2009

Five days off the ventilator

November 14, 2009

Dylan has lasted five days off the ventilator and we were so excited when yesterday the doctors told us we can see how he does off the cpap and go just on a canule when we hold him. They told us only for one hour but when they saw how good he was doing they told us for however long we hold him for...which was three hours. And again today he went for another three hours.

He is tolerating his foods and they will be taking out his central line on monday. He is on 3oz of breasmilk every three hours now. Still tube feeding though.

Monday, November 9, 2009


November 9, 2009

Today the doctors decided Dylan was ready to get a shot off the ventilator...yayyy!! So far so good. It is now 6:30pm and he was taken off at 2:30pm. We are all praying that he is strong enough to go the long haul. I will keep you all posted...

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

Tuesday, November 3, 2009

November 2, 2009

Since I am just starting this blog I am going to go back 4 weeks...

Dylan Anthony Zetouna was born October 1, 2009 at 8:35am and weighed 7lbs 3oz.

The first thing we remember is not hearing a cry from him and soon after they told us that he needed to be intibated because he wasn't breathing on his own. This was pretty much a guarantee that he was going to be faced with this disease.

We have had our up and downs over the past 33 days. It seems as if he will take one step forward and two steps back. The first month with this disease is the most critical. Luckily Dylan has been doing good for the most part. Some days have been hard for him but he has pulled through.

He is having problems digesting his food and urinating. His feedings were being tube fed directly into his stomach but he was having difficulty tolerating it so they moved the tube further down so he has jejunal feeds. Also he is keeping all his urine in his bladder until it is overfull and then releasing it so they are putting a catheter in every 12 hours to drain it. It seems as if most his muscles are weak and hopefully will get stronger over time.

The doctors decided to take him off the vent on October 8 and they told us he would last one hour but our little fighter prooved them all wrong and lasted two whole days and it was the first time we heard him cry and WE LOVED it:) He ended up tiring out and how could you blame him...he was losing weight, living off of tpn which supplies all daily nutritional requirements through an iv and only 8cc of breast milk. They had to reintibate him on October 10 and that was a very hard day for us.

Since he was not tolerating the breast milk they were giving him that was going directly into his stomach, and they were unable to use anymore veins, they decided to put in a central line to his heart so they would be able to leave it in permanently in order for him to get his nutrition. The surgeons had to come to his room to perform this surgery. Everyone seemed to think it was a good thing bc they no longer had to poke him in order to find a vein on a daily basis. They were also able to draw blood from there for his daily lab work. Looking back I suppose they were right bc Dylan had bruises all over his hands, arms and legs from the iv and all the failed attempts.

He started physical therapy and occupational therapy and they are thrilled w all his progress. He is moving around much more now.

We absolutely love all the nurses and they have been a blessing. He has a private room in pod g so its like our private nursery.

Dylan's condition has not changed much, he is still not breathing on his own. We have come to learn this is going to be a long road ahead of us and with all the love and support for our family and friends we will make it through this difficult time.

This Thursday they will begin to wean him off the ventilator, please keep him in your prayers.

Monday, November 2, 2009


The past 6 months of our lives has been a real roller coaster of emotions. It all began when I went to my 20 week ultrasound and discovered my new baby had the same condition as Brady, which was clubfoot. We were shocked that it happened again and the doctor told us there may be more going on since it happened again. He advised us to go see a geneticist and after a few weeks we went in for a blood test for Brady. The doctor could not seem to pinpoint anything and was running a variety of different tests, including one for myotonic muscular dystrophy. He told us he was going to test for that...just to rule it out. Low and behold two weeks later I get a phone call that would change the course of mine and my families life.

I was going about my day when I received the diagnosis which was that Brady had myotonic muscular dystrophy and that most likely the new child would have it also. This disease affects everyone very differently so there was no concrete facts that the doctors were able to tell us. That is the hardest part for us. The doctors are very optimistic when they see how great Brady is doing so that gives us hope for his future. And since Brady is a champ we thought if our next child has it and he or she is like Brady it would not be the worst thing. Although we still had hope and faith that this would not be the fate for our unborn child. But on October 1, 2009 we quickly realized that our beautiful baby boy may also be faced with this disease and have it much worse then Brady.

You expect your life to go a certain way and one day you realize you are a completely diffrent path and its not the one you expected and its not easy but this is life and we learn to deal with it the best we know how. We are so grateful for our children and will give them the best life they could ever dream of. They have all the love from everyone around them and we are also thankful to you all for being there for us.

A few weeks after Dylan was born we decided to start a blog with all his updates so all our family and friends would be able to see all his progress. Thanks for all your prayers and support...we love u all!