The continuing journey of Elijah surviving triplet brother of David and Lucas, born 16 weeks to early due to Twin to Twin Transfusion Syndrome, he is a NEC survivor, and weighed 1lb 8oz at birth. This blog starts during Elijah's hospitalization and continues to the present time. Thank you for praying for Elijah! If you have time I would love for you to leave a short comment, and click on the follow me link in the sidebar, check back often for updates!
Saturday, January 29, 2011
Sunday, January 2, 2011
Loss and Grief
I guess it is time for me to talk about grief. I am not a professional, I just know how I feel, though sometimes I don't understand why I am feeling a certain way. I have never been comfortable with grief, I remember being a little girl at my beloved grandfathers funeral and not being able to cry, even though I felt like the world was ending.
When David was born sleeping I didn't cry, I felt numb like this was happening to someone else. The first thing I remember hearing upon waking from my C-section was someone praying, and my husband crying, it was a lady and she had a strong voice,she was performing a dedication ceremony. I remember laying there with my eyes closed and not wanting to wake up. I remember thinking "why is she dedicating him to God,he belongs to God and has always belonged to God." They brought him to me to hold him, I was in pain from my surgery, I was groggy and sick. He was perfectly formed, he had all of his fingers and toes, I could even see the little bow shaped lip that looked so much like his two year old brother. I couldn't cry, I felt like I was in a dream, I didn't cry, it felt unreal. I still had two babies in the NICU so I turned all of my thoughts toward them, then I had a brush with death myself, a Pulmonary Embolism, which landed me in the hospital several times in the following months. We were miles away from home, no family to turn to. Though I did make some friends who became like family to me, but that is another story.
During one of my hospital stays I was called down to the NICU to speak with the boy's doctor. I was told that Lucas had been having problems with his bowels and that a X-Ray showed that he had lost all of his bowel to Necrotizing Endercolitis (NEC), a disease that often strikes in premature infants. The doctor told my husband and myself that this was not compatible with life and that Lucas would have to be removed from life support. I remember asking if they would give him pain medication first, they said yes. They took us to a small private room, they rolled him in. He was already unhooked from the life support but they were bagging him to keep him alive until we could hold him, this seemed sort of cruel to me at the time, but I understand why they did it.
They put this little tiny baby boy in my arms, he looked exactly like the brother he had already lost, exactly like the brother he had that was still fighting for his life, just like my four year old had looked as a baby.
The doctors had told us that they did not know what he could see, if anything. I do know that he looked right into my eyes, right into my soul. I saw that he recognized me, I saw so much in my dying babies eyes, I swear it was like looking straight into heaven. He didn't die right away, he was born fighting, he didn't know how to do anything else. I held him in my arms, I could feel him leave us at the moment of his death, I could see the life leave his eyes. I felt the presence of God in the room, I knew that my baby was not alone, but that he was being carried home, to be with God, to be with his brother, and to wait on us to join him there.
After he left us we went back to his little bedside for the last time, we helped the nurse bathe him, it was his first and last bath. Through all this I didn't cry, I went up to my hospital bed, I was given strong sedatives, I slept. By the time I got well enough to stay out of the hospital I had cried over my boy's. I was still trying to be strong for my baby who was living. I spent the next four months with Elijah in the NICU, watching him fight for his life, afraid to get to close, afraid he would leave me too.
Now, almost three years later we are home. Elijah is a true miracle, though he has his battles, he has been facing them with all of the strength and fight he showed us in the NICU.
Grief is there, it hits me in different ways. Sometimes I feel fine and then I see a set of twins, or someone tells me something that sends me reeling. I have learned that many people do not understand grief, they don't understand how I can grieve a child I never "bonded" with. I just read a great article on grief, it talked about how when someone loses their parent they lose the past, but when they lose a child they lose the future. That is so true....please read this article on grief and try to understand....
When David was born sleeping I didn't cry, I felt numb like this was happening to someone else. The first thing I remember hearing upon waking from my C-section was someone praying, and my husband crying, it was a lady and she had a strong voice,she was performing a dedication ceremony. I remember laying there with my eyes closed and not wanting to wake up. I remember thinking "why is she dedicating him to God,he belongs to God and has always belonged to God." They brought him to me to hold him, I was in pain from my surgery, I was groggy and sick. He was perfectly formed, he had all of his fingers and toes, I could even see the little bow shaped lip that looked so much like his two year old brother. I couldn't cry, I felt like I was in a dream, I didn't cry, it felt unreal. I still had two babies in the NICU so I turned all of my thoughts toward them, then I had a brush with death myself, a Pulmonary Embolism, which landed me in the hospital several times in the following months. We were miles away from home, no family to turn to. Though I did make some friends who became like family to me, but that is another story.
During one of my hospital stays I was called down to the NICU to speak with the boy's doctor. I was told that Lucas had been having problems with his bowels and that a X-Ray showed that he had lost all of his bowel to Necrotizing Endercolitis (NEC), a disease that often strikes in premature infants. The doctor told my husband and myself that this was not compatible with life and that Lucas would have to be removed from life support. I remember asking if they would give him pain medication first, they said yes. They took us to a small private room, they rolled him in. He was already unhooked from the life support but they were bagging him to keep him alive until we could hold him, this seemed sort of cruel to me at the time, but I understand why they did it.
They put this little tiny baby boy in my arms, he looked exactly like the brother he had already lost, exactly like the brother he had that was still fighting for his life, just like my four year old had looked as a baby.
The doctors had told us that they did not know what he could see, if anything. I do know that he looked right into my eyes, right into my soul. I saw that he recognized me, I saw so much in my dying babies eyes, I swear it was like looking straight into heaven. He didn't die right away, he was born fighting, he didn't know how to do anything else. I held him in my arms, I could feel him leave us at the moment of his death, I could see the life leave his eyes. I felt the presence of God in the room, I knew that my baby was not alone, but that he was being carried home, to be with God, to be with his brother, and to wait on us to join him there.
After he left us we went back to his little bedside for the last time, we helped the nurse bathe him, it was his first and last bath. Through all this I didn't cry, I went up to my hospital bed, I was given strong sedatives, I slept. By the time I got well enough to stay out of the hospital I had cried over my boy's. I was still trying to be strong for my baby who was living. I spent the next four months with Elijah in the NICU, watching him fight for his life, afraid to get to close, afraid he would leave me too.
Now, almost three years later we are home. Elijah is a true miracle, though he has his battles, he has been facing them with all of the strength and fight he showed us in the NICU.
Grief is there, it hits me in different ways. Sometimes I feel fine and then I see a set of twins, or someone tells me something that sends me reeling. I have learned that many people do not understand grief, they don't understand how I can grieve a child I never "bonded" with. I just read a great article on grief, it talked about how when someone loses their parent they lose the past, but when they lose a child they lose the future. That is so true....please read this article on grief and try to understand....
Thursday, December 9, 2010
Merry Christmas...
I had Christmas pictures made of both of my "little" boy's, their big brother decided he wasn't doing pictures this year. Elijah did well for maybe three takes, then he was finished! I still think they turned out well!
Friday, December 3, 2010
Wonderful News- update on Elijah
My little vampire at Halloween! Wow. It is past time that I post in here. A lot has been going on, Elijah was seen at the University of Virginia Children's Hospital, Kluge Rehabilitation Center. He was seen in the CP clinic where I have to say we have received some wonderful news. A year ago a developmental specialist diagnosed Elijah with Cerebral Palsy, level 4. The spectrum ranges from 1-5 with five being the most severe and anything above a 3 meaning that the child will likely be wheelchair dependant.
After the specialist at UVA examined Elijah he said that he did not agree with the level 4 diagnosis, he changed it to a 2! He says this means that Elijah will walk independently! No wheelchair for my boy, unless he just gets tired at a amusement park or something and wants to ride on a scooter :) He will have a limp, and may tire easily, he will never be a football star or run track. But, I know that God has something great planned for Elijah. He constantly surprised the doctors and the hand of God is evident in his life!
Thursday, November 4, 2010
Cerebral Palsy
Elijah is now the owner and wearer of AFO's (ankle foot orthotics) I hope these will help him walk independently. As most of you know he had been diagnosed with Cerebral Palsy. It is hard to say what caused his CP. I do know that TTTS survivors are at high risk for neurological conditions such as Cerebral Palsy, I have seen statistics that say half of all TTTS survivors are diagnosed with CP. Elijah was also extremely premature, this is a risk factor for Cerebral Palsy, and even though Elijah's brain scans in the NICU were normal,this does not indicate that a brain injury didn't occur. "Nearly one half of all preemies who develop cerebral palsy have normal NICU ultrasounds"
Some early warning signs of CP (for all babies, multiples, preemies, and babies that are full term) are:
Some early warning signs of CP (for all babies, multiples, preemies, and babies that are full term) are:
- Problems sucking and swallowing.
- A weak or shrill cry.
- Unusual positions. Often the body is either very relaxed and floppy or very stiff. When held, babies may arch their backs and extend their arms and legs. These postures are different from and more extreme than those that sometimes occur in babies with colic.
- Seizures.
One thing I noticed when Elijah was a infant was that it was often difficult to change his diaper. His legs were stiff making diaper changes hard.
Pictures of Elijahs little AFO's will be posted soon :)
Monday, October 18, 2010
Monday Mayhem
Welcome to Monday Mayhem- the happenin' Monday Place to be.Today's we are playing a modification of a tag- the 8's tag. By 'modifications' we mean we edited out some of the questions we never want to see again.Have fun!
1. Are you living the dream??
Maybe a twisted version of it!
2.Is this what you imagined your life would be like?
Honestly, No. But, whose life turns out exactly like they imagined. If I were living the life that I imagined as a young girl then I would have prince charming, a million dollars, and a maid!
3. I'm coming for dinner, what will you make for me??
I hope you like chicken nuggets!
4. What's your favorite cuss word? I don't have a favorite cuss word!
A. does though, thanks to someone near and dear to me who I won't mention, his favorite cuss word starts wit a D and ends with a N!
5. Tell me one thing you would change about anyone's blog and why?
I really don't know of anything I would change, a blog is like a journal, so whatever!
6.What is your biggest blogging pet peeve?
People who don't comment and don't follow...come on I'll follow you if you follow me!
7.What's your favorite tv show this season? I need a new show! :)
This is crazy, I am 34 years old and I am really hooked on that show, Teen Mom!
8. What's your favorite 'down' time {nothing computer related}? Downtime, what is that....I gues when I get it, it is reading, I love a good book!
It has been a long time since I updated on Elijah. Elijah is doing good. He has been officially diagnosed with Cerebral Palsy. He has also been fitted for AFO's (Ankle Foot Orthotics) and he has been referred to a CP clinic at UVA. I am hoping these will help him walk on his own. Elijah is such an amazing little boy, God has brought him so far. I am certain that he will continue to amaze us!
I will update you when I know more about the clinic he will be attending!
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