and i KNOW i can count on this group... i've copied her last email to me below, as i cannot say anything more eloquently than she has. the baby is at yale-new haven hospital, and as you can all see, he's doing pretty well, for a baby that was born 2 and a half months early with a heart defect. thanks, everyone...
Well, this will probably be the last Aidan Update for a while so I will give as much information as possible. Aidan now weighs 2000 grams which is 4lbs. 6.5oz. This is the ideal weight for his heart surgery which has been scheduled. Last week Aidan was having a series of desaturations which means his oxygen levels in his blood were relatively low. It turned out that the central line that ran from his arm to his heart to adminster the heart medicine was clogged so they attempted severel times to change it out. Unfortunately, because of Aidan's heart condition his veins are pretty much collapsed, making it impossible for the doctors or nurses to start a line. On Friday, Aidan had his first visit to the OR where the surgeons inserted a cathader tube in the jugular vein in his neck. It was abouta two hour surgery and I think he was feeling better than I was when he came back to the NICU. On thursday, August 19, Aidan will have the m ajor heart surgery done. They will be opening his chest and switching his arteries. The doctors are guessing it will be about 8-10 hours of surgery. His chest will remain open after the surgery until the swelling of his heart goes down. As the day approaches my nerves are just shot and I'm kind of on the very anxious nervous side of this now - reality - a harsh reality that there will be no gray area after thursday, it will be one or the other. Aidan is strong, he is quite a flirt, and he has a firecracker of a personality. His eyelashes hit his lower cheekbone when he is asleep and he prefers, like all my boys, to sleep on his tummy. He loves country music like his mom and has the same dimple in his chin. He likes to sleep and eat and is quite the lady's man like his dad. His hair is getting lighter and it is not from the sun. He is loved not just by all of you but by the nurses, doctors, and therapists that stop by on a daily basis just to say hello. The nurses have bought him blankets and outfits and sign up weeks in advance to have him on their rotation. One of the cardiologists sits by his crib while she does her work. And Aidan is a fighter - the strongest, bravest little man I have ever seen. He is 11 weeks old today. August 19 was Aidan's original due date and on that day he is going to need all the prayers he can get. I am hopeful he will do well and I have a feeling August 19 will be a second birthday for Aidan, whom I guess is right on schedule! Thank you for all you have done, for your prayers, and everything. I have had the priveledge to watch a miracle grow and observe the power that prayers have first hand and soon, I'm sure, you will all get to see Aidan when he comes home. Please pray for Aidan on August 19.
Jiffy I couldn't read the whole post I find it too difficult, I can't imagine any parent going through that ordeal... My PRAYERS are definitely with them...
I know how it feels to have a sick child. My child was born December 15, 2002. I was so happy. When he was born his eyes were so yellow. I asked the Dr. why was his eyes so yellow and he told me some children are born like that and it would eventually clear up. So being that he was a Dr and all I took his advice and took my baby home with me. I notice that everytime I moved him that he would moan. When I took my baby to his two week checkup I told the Dr he seemed in pain everytime I moved him and he stated that it took all kind of people to make the world. So once again I took the Dr. advice and smiled and took my baby home. Well, on February 14,our lives charnged, my baby would not eat and all of a sudden he had a seizure. I called the ambualnce and they called back asking where did I live because I live in a rural area. My husband had my car and he works offshore and he is gone for two weeks at a time and home one week. So I called my mom and she rushed us to the hospital. There I was carrying my seizured baby in the ER screaming for help. I told them I called the ambulance and they never came. My baby was rushed to a children hospital that was an hour away by ambulance. There I was told my baby had a rare liver disease called biliary atresia. I was devestated. I never heard of the disease and I asked the Dr. how do you get the disease. He told me that some babies are born with it and it is nothing that the mother did wrong. My husband had to come home and we had to take turns in the hospital watching the baby for seizures. One seizure was very fatal. They gave him a medication to stop the seizure but little did they know that he was alergic to it, It made him stop breathing. I fell to the floor and I just asked the Lord to save my baby. My baby had over 20 seizures. My baby was on a respirator and had to go to NICU. We lost our room and we didn't have any money to get a hotel room. The hospital put us up at the Ronald McDonald house. My baby had his surgery once he got strong enough and had his liver repaired. The Dr. said the surgery is to buy time before he would probably need a new liver. Well, I am glad to say that my baby is doing fine and his liver is working good. He is an active 20 month old and he plays with his 9 month old brother (stop calculating I got pregnant when my son was two months old) and he plays with his 8 year old sister. I got to meet another mom who son had the same disease but her son did not make it. I keep in touch with her often but it is so hard to talk to her because she lost her child and I feel uncomfortable around her because I can feel her pain. My son takes 5 different medications a day and I admire him and his stregth. For all of you that have a sick child, you were given that child for a purpose. God knew you were capable of giving that child the best love that you could possibly give. Stay strong.
update: the surgery was delayed until next wednesday. the surgeons were up all night doing emergency surgery on another tiny baby.. and didn't feel they could take care of aidan in their condition.
sooo a postponement..
but don't stop all those prayers and good wishes!!!!! it's a long haul...
Jiff you know you have my prayers, even though this is the first time I've posted here. My BIL is a doc (peditritian) there at the Yale hospital, if it wasn't for the new hippa laws, I have him check up on her and fill me in, but that's illegal now!
what we take for granted, we should be thankful for our healthy babies. I can't even imagine the pain the suffering a mother goes through in such a situation. I only can recite, a quote from the Late Erma Bombeck, who said that God only gives these handicapped babies to mothers who are strong, and need no guardian angels, because they are angels themselves.
Jiffy, my prayers are with you and all of you family. Although I've never had a close family member who's newborn baby was sick, but I do know what it feels like when a close family member is in the hospital. My father was in the hospital for Hogdkins Disease (cancer), about 7-10 years ago. I was very upset and scared at the same time. But like I said, my prayers are with you and all of your family. Please keep us updated as to how things are going. God bless.
my goddaughter's newborn needs prayers
I got pregnant when my son was two months old) and he plays with his 8 year old sister. I got to meet another mom who son had the same disease but her son did not make it. I keep in touch with her often but it is so hard to talk to her because she lost her child and I feel uncomfortable around her because I can feel her pain. My son takes 5 different medications a day and I admire him and his stregth. For all of you that have a sick child, you were given that child for a purpose. God knew you were capable of giving that child the best love that you could possibly give. Stay strong.
