Wow well this last 4 months have been so wonderful, stressing time ever. I worry every day what is going to happen with Timothy how this is affecting him, what his thoughts are about all this.. I know he don't understand it all but when he gets sick or crys so much and looks at you like (what is wrong with me? How come I do this, can you help?) look on his face brakes my heart. He is truly a blessing. Since Timothy's birth and upon learning about his condition we had always been afraid to lose him. Not knowing if he will make it until surgery and not knowing if he will make it during or after surgery.. I have turned to the only person who knows this answer, God.. I have come to realize that he is the one who has Timothy in his hands and without trusting in the Lord would make this time so much more hard and confusing. No I don't know why Timothy has this condition and I don't know how many times he will need surgery. But what I do know is if I put my faith in the Lord he will be here with us every step of the way. I'm not sure how I went so long without living for God. I completely trust him with my kids.. I thank him everyday for blessing us with another day. I pray that he will help Mike open his heart to find him and that we can give Christopher and Timothy a great life, and to fallow the Lord for the rest of our lives.
I often think about how this is going to effect his life growing up and I find myself crying wondering when he goes to school if he will need a Dr's note saying limited PE, No military, Having to rest while running, Or if maybe he will be a football player, Baseball player or if he will just sit and watch.. I don't know where his life will end up but I do know that whatever way it goes I am going to be right here next to him trying to be the best mom I can be to him and Christopher, and the best wife..
Does this mean we will see the Dr's for the rest of his life YES. But this does not mean we have to make it the worst thing to happen.. If anything this has made such an impact on my life that I know I must wake up everyday at try and give each day my all.... I am truly blessed to have such a wonderful family. I love them so much.. Tho at times I wish people would understand that I am not going to always be strong, There may be times when I need to sit down and cry and let it out.. My family is hurting right now and we all try to put a happy face on and make the best of each day. Well I cant do this everyday and I am certain that you couldn't either... Knowing surgery should be real soon makes me so happy and scared... I keep telling myself that Timothy is going to do great and that when surgery is over he will be so much better.. Maybe after he will start improving on some of the skills he lost and doesn't have yet. He has lost the swallow affect so we do not nurse, I try bottle feeding him my breast milk or rice cereal with breast milk and he doesn't seem to remember to swallow it.. Also he should be able to use major muscle skills better after his recovery...
March 26, 2011
So today has been a real hard time for Timothy and us.. He seems to be in need of his surgery very soon. He is having problems and nothing seems to be helping.. we have tried our last source for him keeping food down and him being able to gain weight.. well we (Dad, Nurse & I) think that it is him going into more heart failure..
He is so much more fussy, stuffy, retracting a lot more, tired, & irritated. It seems momma holding him is the main thing that calms him down..
I am not even sure how to feel about all this.. If he has surgery to soon he is at greater risk of infections, or other complications, But then maybe that doesn't happen and he has surgery and everything goes good then he will be a much happier & healthy baby... If we wait then he will be uncomfortable for the next 2 months... So all I can do is tell our son how much I love him, how he is strong, and how he will get better.. We must live each day as a blessing..
The Dr also said we don't need to try and get him to eat by mouth anymore because his may aspirate... He has a hard time with swallowing so we are sticking with the Binky until after surgery and he is recovered. It will take about a few months to learn how to swallow again.
March 10, 2011
I was trying to find a way to give away all my extra milk. Since Timothy wasn't eating much and I had a stand up deep freezer full of lots of milk and had no idea what I would do with it all.. Well recently I had heard that there is a facebook page where moms would give and receive milk. So I searched it and posted on the site saying I have milk and am willing to give it away.. Well I found a beautiful little girl who is just a couple weeks older then my son.. I thought how perfect, she needs milk and I think I need to get rid of lots.. I had over 700oz in the freezer at that time.. Well I made my first donation to her. It was so exciting to know that Timothy and I could help someone who is in need. Something I had wish I would have received when I lost my supply with Christopher.. Today May 17th I have donated to her lots of milk and have made a good friendship with her and her family.. She is only receiving my Milk. This way we dont have any worries about any problems she may have from the milk.. She is a healthy, happy, beautiful baby.. She is a very loved child. She has "3" mommies.. Biological mom, Mom, and Milk Mom... She is going to grow up being a very spoiled little one.. I am making sure I do everything in my power to continue to feed Timothy and Addisyn for as long as I can or as long as needed...
October 22 is the last day i have gaven addisyn milk..
June 26, 2011
So with the stress going on between surgery and the fact that my father in law has cancer and has not been doing so good there has been lots of stress.. So this has made my milk supply decresse I let Dannielle know that my supply was getting low so she might want to get a few bags of milk from another doner.. Well she has been a very kind woman who as cooked for me and bought milk bags, milk pills to help me with my supply.. Well she had found someone who donated some milk to them.. well when they tryed to feed her some of that milk she did not like it.. Lucky that i had been taking those pills and my supply has gone back up so she was able to come over to my place and pick up the milk.. I have been feeding her for the past 3 months almost 4 months so she knows the difference in the milk and knows what she likes...
Today I had talked to my Grandma and Grandpa (Dad's Side) and Grandma informed me that there heart problems run in the family and that we have had a few relatives who have passed away from heart problems... I had a hole in my heart that had closed later in my life and my Dad also had one that had closed later in his life.. So this could be the cause?????
June 10, 2011
Well we just got the call saying Timothy will have another cardiac cath done on June 16th, This will help the Dr's and Surgeons decide what surgery is going to be best for timothy.. So we will be spending a couple days in the hospital. I dont think Timothy is going to be up for doing anything for fathers day.. So we will probably stay home nothing to exciting for him but rest. For Dad (Mike) I can cook him breakfast or lunch.. I guess we will wait and see.
We also just received a call from the Dr. He said they are waiting on the data they will receive from the cardiac cath to decide which surgery will benefit timothy the most. He also outlined a new repair option that was discussed this morning, it would involve closing the hole in his heart and removing a muscle bundle that is blocking his aorta. This is a much more simplistic procedure than the others, but with a very high risk of timothy needing a pace maker.
June 26, 2011
Tell today is sunday we are at the in laws haveing a beautiful dinner with the whole family..
So what i wanted to up date everyone and let them know that on friday we was told that Timothy will probably not have surgery until Middle to End of July..
I am truely unsure of what to think about this.. But I wonder why do they tell us that he is going to have it done at the end of june and then change it.. It is fustrating and yet at the same time when the date is pushed out that mean we know that is more time with him.. It is getting pretty scary for us cuz at night he turns blue/purple and we know his oxygen is getting low. we just wonder how long are they ok with this? I guess knowing that as long as everything goes good that this will make him feel and look much better..
July 7, 2011
Well we have 6 days tell surgery. I am getting pretty excited and scared.. Timothy seems to be doing alight. I have been wanting to do some fun things with timothy and christopher before the surgery but dad is at drill in washington for the weekend and there is so much to get done before surgery so it looks like that is not going to happen .... They still are not sure what surgery they are going to do.. There is 2 options that they are looking at. On surgery date July 13th, 2011 they are going to open him up and talk about what they are going to do.. They think opening him first will give them the best look at his heart. Then they will decide what surgery to do.
Aug 9, 2011
Well they got 5 models of timothys heart. This has made them see a new idea for surgery. So it could be pushed out for another 2 weeks. I will know by tonight.. This new idea of surgery would be a much more bigger surgery, that the risk would also increase but then he wouldn't need any other surgerys.. I honestly dont even know what to think about this idea.. i dont like the fact that its a bigger surgery and those things i dread could happen.. but then it is a surgery that would be his last planed surgery.. I honestly am likeing the idea of a pace maker much better....
Well i just got the phone call from the dr and he said we are going on with surgery tomorrow. they will do what they have planed..