I just found out today that our story will be published in the National Newsletter for the March of Dimes. I am so excited for our family that we are able to share our story and hopefully reach out to one family and help them. I am also going to be volunteering at Helen Devos Children's Hospital in their NICU as a parent to parent and with that I am hoping to reach parents like me that spend days with their babies willing them to live and to get healthy so that they can come home.
I am so excited about these opportunites that have become a part of my life. It has helped me in dealing with the death of Sofia and Grady and has given me the opportunity to give back to other families in what could be one of the most desperate times of their lives.
Thursday, March 24, 2011
Monday, March 21, 2011
Progress
It has been a year since my last post and I find it hard to believe that all that time has gone by. Levi has made so much progress and yet there is still progress to be made. He is 19 months old and walking. He has such a charming personality. He has had several surgeries, tonsils and adnoids removed, tubes put into both ears and we are waiting to find out if he will have one more surgery to remove a hernia. Since having his tonsils and adnoids removed he was also able to come off his oxygen which that was 3 months ago.
As I look back on the progress that has been made I am amazed how strong one little baby can be. I am sure there would have been plenty of times that we as adults would have wanted to give up but Levi just kept on going and fighting.
Levi still struggles with eating. He is still being fed through his g-tube but he wants so badly to eat. However, everytime he is fed he gags and wreches and therefore associates that with eating so he will not take anything by mouth. He is in feeding therpy and has made progress and we continue to work very hard but until we can get the gagging and wreching to stop he will continue to avoid eating. I am bound and determind to get to the bottom of this and to get him eating like any other normal child.
Together Levi and I make a great team and together we will continue to teach eachother and make progress together.
As I look back on the progress that has been made I am amazed how strong one little baby can be. I am sure there would have been plenty of times that we as adults would have wanted to give up but Levi just kept on going and fighting.
Levi still struggles with eating. He is still being fed through his g-tube but he wants so badly to eat. However, everytime he is fed he gags and wreches and therefore associates that with eating so he will not take anything by mouth. He is in feeding therpy and has made progress and we continue to work very hard but until we can get the gagging and wreching to stop he will continue to avoid eating. I am bound and determind to get to the bottom of this and to get him eating like any other normal child.
Together Levi and I make a great team and together we will continue to teach eachother and make progress together.
Sunday, March 28, 2010
Tears
There are days that I wish I could just sit and cry, but I can't. I wish I had time to sit and just think and remember, but I can't. When I do have a few minutes to myself I am thinking of all the things that I need to get done and not enough time to do it....
I did however find time to go to a support group for parents who have lost a child to either miscarriage, full term loss, prematurity, or illness. I have gone before, after each of my miscarriages and I even went while Levi was in the hospital but I had not gone since he came home. I was holding him the other morning and just looking at him and knowing exactly what Grady would like but wondering what Sofy would look like and I realized how sad I was but I could not cry. I wanted to hold Grady and Sofy so badly at that moment that it hurt.
I also tried to remember the day that Sofy was born and I could not, just small things. I remember seeing her little hand in mine and talking to the Dr later that night and then the Dr bringing her to me and taking her off her vent. I want to remember everything, what led up to her delivery, who was my nurse, when did I call my husband but everything that day was a blur. The birth of your child is supposed to be glorious and beautiful but not sad. I knew that when she was born she would die.
The birth of the boys took me by surprise, everything with them had been going so well. I do remember hearing Levi cry but not a sound from Grady. I do not remember my trip to the NICU to see them, or talking to the nurses. I do however, remember the day Grady died and when I think back on that day all I want to do is cry but I find that there are no tears.
I did however find time to go to a support group for parents who have lost a child to either miscarriage, full term loss, prematurity, or illness. I have gone before, after each of my miscarriages and I even went while Levi was in the hospital but I had not gone since he came home. I was holding him the other morning and just looking at him and knowing exactly what Grady would like but wondering what Sofy would look like and I realized how sad I was but I could not cry. I wanted to hold Grady and Sofy so badly at that moment that it hurt.
I also tried to remember the day that Sofy was born and I could not, just small things. I remember seeing her little hand in mine and talking to the Dr later that night and then the Dr bringing her to me and taking her off her vent. I want to remember everything, what led up to her delivery, who was my nurse, when did I call my husband but everything that day was a blur. The birth of your child is supposed to be glorious and beautiful but not sad. I knew that when she was born she would die.
The birth of the boys took me by surprise, everything with them had been going so well. I do remember hearing Levi cry but not a sound from Grady. I do not remember my trip to the NICU to see them, or talking to the nurses. I do however, remember the day Grady died and when I think back on that day all I want to do is cry but I find that there are no tears.
Friday, February 12, 2010
Challenges
We are all given challenges in our life and we wonder why they were given to us. Were they given to us because someone thinks we can handle them? Were they given to us because we did something wrong? We will never know the answeres to these questions but we will take these challenges and deal with them the best way we know how.
Gary's cousin who is giving, generous and one of the most kind hearted people I know was given the challenge of a lifetime. Kim was drinving into work on a icy morning and was in a single car accident. She layed there for 45 minutes thinking she was dying and that her body was split in two. Once the ambulance arrived she soon realized that was all intact and only had a small amount of blood on her hand. However she still could not move. Once at the hospital she found out that she broke her neck and she is now paralized from the chest down. That moring she was able to walk, feed herself, drive a car, dial a phone without a second thought but now her life will never be that easy, it will be filled with challenges. I went to visit her last week and the first words out her mouth were "How are you doing?" I was taken a back by that. Her attitude was enough to blow me away, she was so upbeat about her life and the challenges ahead of her. She did not lay in that bed and feel sorry for herself like most. Kim is dealing with her challenge the best way she knows how.
The day that Grady died most of the nurses in the NICU were amazed that Gary and I came back that night to see Levi. I never gave it a second thought, Levi needed us and I still had another son to take care of. My challenge was to grieve for my lost children but yet carry on and focus on bringing Levi home. I never thought about what was the right thing to do or the wrong thing to do I just did it. I am dealing with my challenges the best way I know how.
I believe that I was given these challenges to make me a stronger person, make my marriage stronger and maybe someday reach out to a mom or a dad that will have to grieve the loss of a child and help them understand that they need to take their challenge and deal with it the best way they know how.
I think that is all we are asked to do.
Gary's cousin who is giving, generous and one of the most kind hearted people I know was given the challenge of a lifetime. Kim was drinving into work on a icy morning and was in a single car accident. She layed there for 45 minutes thinking she was dying and that her body was split in two. Once the ambulance arrived she soon realized that was all intact and only had a small amount of blood on her hand. However she still could not move. Once at the hospital she found out that she broke her neck and she is now paralized from the chest down. That moring she was able to walk, feed herself, drive a car, dial a phone without a second thought but now her life will never be that easy, it will be filled with challenges. I went to visit her last week and the first words out her mouth were "How are you doing?" I was taken a back by that. Her attitude was enough to blow me away, she was so upbeat about her life and the challenges ahead of her. She did not lay in that bed and feel sorry for herself like most. Kim is dealing with her challenge the best way she knows how.
The day that Grady died most of the nurses in the NICU were amazed that Gary and I came back that night to see Levi. I never gave it a second thought, Levi needed us and I still had another son to take care of. My challenge was to grieve for my lost children but yet carry on and focus on bringing Levi home. I never thought about what was the right thing to do or the wrong thing to do I just did it. I am dealing with my challenges the best way I know how.
I believe that I was given these challenges to make me a stronger person, make my marriage stronger and maybe someday reach out to a mom or a dad that will have to grieve the loss of a child and help them understand that they need to take their challenge and deal with it the best way they know how.
I think that is all we are asked to do.
Sunday, January 31, 2010
A little history
I thought that I would back track a bit to give a little history on how much my life has changed in the last year and how I ended up where I am right now.
Gary and I wanted to try and have another baby and we knew that this would be our last time trying since we have to use some fertility treatments and it is so costly. I have had 6 miscarriages in 5 years and I have one living child and her name is Elly. We found out we were pregnant in March of last year and we were so excited. I had my HCG numbers drawn and they looked good a little high for me which in the back of my mind I thought we had a chance for for twins. We went to Vegas with friends and upon our return we found out we were having TRIPLETS. Needles to say we were dumbfounded and shocked and once reality set in all I could do was cry. I kept thinking this was so unfair to Elly and where would we put 3 more babies, our car was too small. We had our first ultrasound and we saw all 3 heartbeats, however we had one baby that was measuring quit small. The Dr's knowing my history told me that if I was going to miscarry it would be that baby.
Fastforward, I am 16 weeks pregnant and end up in the hospital for a shortend cervical length, they keep me for a week and then send me home on complete bedrest. I go back to the Dr in 1 week and end up back in the hospital again because I am dialted. At 19 weeks I ruptured my water for Sofy and delivered her at 22 1/2 weeks she lived for 9 1/2 hours, she weighed 12oz. I went to carry the boys for another 2 weeks and delivered them at 24 1/2 weeks. Grady weighed 1lb 10oz and Levi weighed 1lb 7oz. Grady was very sick and died after a tremendous fight 10 days after his birth.
Levi is now home after 153 days in the NICU!!!
Gary and I wanted to try and have another baby and we knew that this would be our last time trying since we have to use some fertility treatments and it is so costly. I have had 6 miscarriages in 5 years and I have one living child and her name is Elly. We found out we were pregnant in March of last year and we were so excited. I had my HCG numbers drawn and they looked good a little high for me which in the back of my mind I thought we had a chance for for twins. We went to Vegas with friends and upon our return we found out we were having TRIPLETS. Needles to say we were dumbfounded and shocked and once reality set in all I could do was cry. I kept thinking this was so unfair to Elly and where would we put 3 more babies, our car was too small. We had our first ultrasound and we saw all 3 heartbeats, however we had one baby that was measuring quit small. The Dr's knowing my history told me that if I was going to miscarry it would be that baby.
Fastforward, I am 16 weeks pregnant and end up in the hospital for a shortend cervical length, they keep me for a week and then send me home on complete bedrest. I go back to the Dr in 1 week and end up back in the hospital again because I am dialted. At 19 weeks I ruptured my water for Sofy and delivered her at 22 1/2 weeks she lived for 9 1/2 hours, she weighed 12oz. I went to carry the boys for another 2 weeks and delivered them at 24 1/2 weeks. Grady weighed 1lb 10oz and Levi weighed 1lb 7oz. Grady was very sick and died after a tremendous fight 10 days after his birth.
Levi is now home after 153 days in the NICU!!!
Friday, January 8, 2010
An end in sight
After a very long journey I can finally see an end in sight. I can see such progress that Levi is making and this is a reality check that he will soon be home where he belongs. This will be so bitter sweet bringing him home and not his brother and sister.
There are still a few things he needs to accomplish before he can come home. His feedings are his main struggle. Right now he is compressed over 30 minutes and nippling 25ml. Once we can get him to gavage and nipple then I am sure we will start the talk about when he will be packing his bags to come home. We do have a meeting next week with Levi's Dr and I am sure we will set a plan in place for the next couple of weeks.
There are still a few things he needs to accomplish before he can come home. His feedings are his main struggle. Right now he is compressed over 30 minutes and nippling 25ml. Once we can get him to gavage and nipple then I am sure we will start the talk about when he will be packing his bags to come home. We do have a meeting next week with Levi's Dr and I am sure we will set a plan in place for the next couple of weeks.
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