Wednesday, December 23, 2009
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
Monday, December 14, 2009
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
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 him...it 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
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.
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
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.
Friday, 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
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
The doctors decided to give Dylan a chance with gastric feeds. It has been going great so far...no 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.
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.
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
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
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
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
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
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!