Other plans for Elijah!

It is  amazing to see Elijah walking, something we had been told he may not do, but God has other plans for our little miracle!

I have been nostalgic for the past couple of weeks, maybe it is the upcoming Christmas season. I don't know. While we were decorating our tree, the first thing I pulled out was the tiny blue stockings I bought 3 years ago, in memory of what would have been Lucas and David's first Christmas. I try not to think about what it would have been like, having three little Elijah's running around, wreaking havoc! I know that two of my boy's celebrate in heaven, and what better place to celebrate the birth of Christ? It is hard not to have them here with us though.

It is human to question why, but I know God has and is working through this situation. Sometimes I feel like he is so far away, but I know from experience, that God is near. I heard someone who almost lost his wife in a car accident say, "God knows my name." That is the way it is, God does know our names, he loves us on a personal level. He was very present in my life during that time of need, and yes, he is still here.

He sent angels to comfort me, in human form. I was so far from home, I felt so alone, I met so many people during that time. Some who I spent a lot of time with and some who only touched my life for a moment, all of them were important,  and all of them helped me in some way. I am amazed at the complete strangers who became dear friends, who sat up with me late at night,  those who laughed and cried with me. I will never forget them, they were a gift from God. Whenever I despair about the evil in this world I take hope from knowing that, yes, their are dear kind people in this world. God puts them right where you need them. I am so thankful!

I hope everyone who reads this has a blessed Christmas. I have included some pictures of our little miracle walking, the one the doctors gave no hope, the one who wasn't supposed to make it through the night, the one who was never going to walk, who turned three last spring,  and whose smile lights up a room. Yes, there are miracles, you can deny it all you want, but I have one living right here with me!

 Peek a Boo! 

 Elijah climbing! 

Elijah walking!

Elijah running! 

Jeremiah 29:11

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Update on our little rascal!

Hi everyone, we have been busy. Elijah is still attending school and he is doing well. He is walking now but is still pretty unsteady. We are looking into a walker to help him with balance, though the doctors and therapist feel confident that he won't be dependant on it for long! We have to think about safety though, we have already visited the emergency room and he had five staples put in his head after a fall.

 Poor little guy has been through so much that he don't feel pain like the rest of us. He never cried when he hit his head, I just noticed the blood pouring down his face. When the doctor put in the staples Elijah didn't even flinch.  Having a child who doesn't feel much pain can be scary. When he falls I often have to check him over, he could have a broke bone and we wouldn't even notice it right away, that is a scary thought!

Here are a couple recent pictures of Elijah, he is getting so big!

After everything he has been through he is the happiest of little boy's!

Elijah and a friend!

BIG UPDATE!

I only have a moment, but wanted to let everyone know... Elijah is.....

WALKING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You know how amazing that is!! God is so good! I promise to post more soon with a picture!!



Happy Birthday!

Elijah turned three in April. We celebrated with his big brother at a birthday bash at fun expedition! What a fun day! Elijah is such a miracle, 1lb 8oz at birth, a TTTS survivor, multiple surgeries, and a CP diagnosis. Yet he continues to astound all of us at the progress that he has made and continues to make! At a week old the doctors told us he would not make it through the night! Look at him now! Happy third my little miracle!

 My miracle birthday boy!

My TTTS story....

As most of you know, the reason Elijah and his brothers were born early is a disease called Twin to Twin Transfusion Syndrome (TTTS), here is some information on TTTS that I got from the TTTS foundation web page, a great resource!

*Twin to twin transfusion syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.


*TTTS affects identical twins (or higher multiple gestation's), who share a common monochorionic placenta.


*The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins.


*The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive

*The events in pregnancy that lead to TTTS - the timing of the twinning event, the number and type of connecting vessels, and the way the placenta is shared by the twins are all random events that have no primary prevention (see section on The Monochorionic Placenta), is not hereditary or genetic, nor is it caused by anything the parents did or did not do. TTTS can happen to anyone.

My Story......

Elijah, Lucas, and David
We found out in 2008 that we were expecting triplets. We were shocked and surprised, but soon began to anticipate the arrival of our identical boy’s. At first the pregnancy seemed to be going well. I was hospitalized a few times for extreme nausea, but otherwise things looked good.

Since my pregnancy was considered high risk I was sent to a specialist. During my 21 week visit it was noticed that one baby had an excessive amount of amniotic fluid, his brothers still looked okay so I was sent home on bed rest and an appointment was made for the following week.

During my next appointment the doctor discovered that the babies were showing signs of Twin to Twin Transfusion Syndrome a disease of the placenta that affects identical twin (or higher order multiple) pregnancies, the shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins. The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive.

My doctor immediately contacted a specialist in Florida who does laser surgery to try and correct the problem. Within days we were driving the 12 hour trip to Florida, I was supposed to lie down the whole way due to a shortening cervix and the fear of premature labor. I spent that whole trip thinking I was going to give birth on some interstate between Virginia and Florida. After two days on the road we made it to Florida, I spent the entire day after our arrival being tested, and having multiple ultrasounds. Finally the doctor came to me and gave me several options; the one we eventually chose was laser surgery.

I barely slept the night before the surgery, we went in early the next morning and I was prepped for the procedure. I was kept awake during the whole thing because it was better for the babies. I remember being in a lot of pain but still getting excited when I saw the babies on the T.V. screen used to help the doctor guide the laser. Surgery was declared successful and the doctor said my cervix was going back to normal so a scheduled cerclage (stitch in the uterus) was cancelled. I was taken to recovery and then to the room where I was to spend the night. That night turned into a week because a few hours after surgery the membranes around baby A (David) ruptured, causing his cord and foot to prolapse into the birth canal.

I was rushed to labor and delivery where it was decided to try to hold off on delivery of baby David to give the other babies a chance, as I was only 23 weeks at the time. The week I spent in the hospital was a blur, I remember feeling David’s cord pulsing and his little foot wiggling as he tried in vain to be born. He held on for an entire week and passed away shortly before I was taken in for an emergency C-section. Baby B and C were delivered extremely premature at 24 weeks 0 days and were rushed to the NICU.

Lucas who weighed 1lb 5oz at birth fought for survival, he was such a strong and brave little boy. He was born fighting and he did not know how to do anything else but fight. He never gave up, but at one month of age it was discovered that NEC (a infection common in preemies) had destroyed his bowels. The NICU doctor told us this was not compatible with life so we held our baby while the doctors took him off of his ventilator. He died as he had lived, fighting. He fell asleep in the arms of his parents. Lucas and his brother David were both little warriors and they will always be in our hearts. They are survived by triplet brother Elijah, he spent four months in the hospital, has had multiple surgeries. At two he was diagnosed with mild Cerebral Palsy.

This story as well as others about TTTS can be found here

Information and help for TTTS can be found here

David

Lucas in the NICU

Elijah

Guest Blogger-Dennel's Twin to Twin Transfusion Story

As most of you know, the reason Elijah and his brothers were born early is a disease called Twin to Twin Transfusion Syndrome, here is some information on TTTS that I got from the TTTS foundation web page, a great resource!

Twin to twin transfusion syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.


TTTS affects identical twins (or higher multiple gestation's), who share a common monochorionic placenta.


The shared placenta contains abnormal blood vessels, which connect the umbilical cords and circulations of the twins.


The common placenta may also be shared unequally by the twins, and one twin may have a share too small to provide the necessary nutrients to grow normally or even survive.


The events in pregnancy that lead to TTTS - the timing of the twinning event, the number and type of connecting vessels, and the way the placenta is shared by the twins are all random events that have no primary prevention (see section on The Monochorionic Placenta), is not hereditary or genetic, nor is it caused by anything the parents did or did not do. TTTS can happen to anyone.

To raise awareness of TTTS I will be having guest blogger's who have been affected by this disease! Please visit the TTTS Foundation web page, this is very important if you or someone you know are pregnant with multiples. Find out if you are at risk. As you will see, the disease is often progresses quickly, and their are things that can be done to increase your children's chances of survival. If you are pregnant with multiples ask your doctor about your risks, if your babies share a placenta, demand weekly ultrasounds.

Please visit the Twin to Twin Transfusion Foundation for information, help, and advice.

D.



Here is Dennel's story:

*Please realize that some of the pictures included in the TTTS stories will be pictures of extremely premature and/or ill babies, some of the pictures will be babies after they have passed away, for some of us these are the only pictures we have of our children. Please be kind and if it bothers you, you don't have to look! This is the reality we live with every day, this is one of the outcomes of Twin to Twin Transfusion Syndrome. Thank You Dennel for sharing!

In May of 2006, we decided to try to get pregnant. 3 weeks later, I found out I was pregnant. So there wasn't a lot of trying there! My due date was February 6, 2007. I was sick. So sick. But I always believed that whatever pain, bring it on, it's worth it to have a baby.

Around 3 months I felt a little bigger than normal. I felt baby move at 12 weeks. I suspected twins, but I though the uterus grows faster second time around. I already had a 2 1/2 year old girl. But because it's fun, after my 3 month checkup, I got a paper on houses for sale and waited for my husband to get home. I told him we needed a bigger house because we were having twins. He didn't believe me. Later that night I admitted my bluff. I was getting bigger and bigger, but I didn't worry as my ultrasound was coming up. I thought I had a 30% chance it was twins based on my suspicions.

My ultrasound was on Sept 15, 2006. I went with my husband and daughter. When the ultrasound technician looked at the screen she said, right away, so you know there's two babies in here, right? All my TTTS mommies know that wobbly feeling and that big goofy grin. I was excited. Terrified. I wanted to know what they were. I watched them on the screen and I saw a penis and said, oh, it's a boy. And by that time, she had already told us they were identical. I never thought that that would be the last time I saw my babies move.

She worked on my belly a long time, and told us she wasn't sure if one amniotic sac was big and one was little or if they were sharing one. So I was a bit in shock. Shaking. I was 19weeks and 2 days and she said they were 9 oz each and was measuring 18w4d and 19w. The heartbeats were 163.

Twins are such special people. I've always been amazed by twins. The radiologist came in after looking at pics and said everything was fine. He said that I would have to go to my doctor to be referred to a specialist. I asked, "right now?" He said no, just at your next check up. But smart me, I booked the check up for a few days later. I called everyone I knew to tell them we were having identical twin boys. My husband always wanted a boy and he had such a permanent smile on his face. If he was scared at all, he didn't let on.

I was on diclectin to help with nausea, but if I ate breakfast, I guarantee you I puked my guts out. I slept with water bottles around me because I was in such pain. I told my doctor and she said, that's just because you have two big healthy babies in there. So I sucked it up. I couldn't walk from one side of the store to the other without a rest. I wondered how I'd make it through the other half of pregnancy.

September 23: I went to work one week after my ultrasound. ( I work part time) I couldn't do it. My belly just hurt so much. Constantly. So I called my boss and she said, "Go, take care of yourself. Don't worry about work." So I called the doctors office. They said if I was in that much pain, go to the hospital. Reluctantly, I did. They did the blood work and urine work and did the heartbeats. Everything was fine. They asked what my pain tolerance was like. They made me feel like I was just a hypochondriac. But I didn't feel OK. I didn't.
They suggested Tylenol. I told them I didn't believe in medication while I am pregnant. She said it's completely safe. I told her they said the same thing about thalidomide. As long as the babies were OK, I'd suffer through.

Sept 26: So, I had taken the weekend off and went to the doctor on Monday for a magic note to get out of working. Just touching my belly had me in sobs. She said I shouldn't be in that much pain and that I needed to go back to the hospital. She was going to order an ultrasound this time. She said she'd call the hospital and tell them I was on my way.

I went. My mom and daughter were there with me. The doctor I talked to was a twin, so I felt more at ease with him. I picked his brain about what life with twins was going to be like. Believe it or not, the biggest worry I had on my mind was switching the babies. Should I circumcise one and not the other or get a tattoo on one?

Stupid thing was as soon as I found out I was having twins, I went to the library and got every book I could find. There were a couple paragraphs (more like sentences) about TTTS. They said there are no symptoms, and that prevention is regular checkups. So thank you to those who are writing books and getting the word out. I didn't have the Internet then, or I might have been able to find out more. But I probably would have been passive about it anyway.

So they measured my belly and I grew 8 weeks worth in 1 week. I was now measuring 42 weeks and I was 20w3d. So I was pretty sure I would bust before they came out. They came back with some serious faces. We think we know what's wrong with you. You have TTTS. He explained it. Without the surgery, they would most likely both die. He explained the options and the laser surgery. He said, the bad thing is only a few places in the world offer this surgery. Good news is Toronto is one of them and we have a chopper waiting to take you right now. We just need to do an ultrasound to confirm it. Just before the ultrasound, my husband got there. They let him stay, but after a minute looking at the screen, they kicked out my mom and little girl.

I met the OBGYN that was supposed to take over my case. I had an appointment booked with her for 3 weeks from now. Her face was serious and she was quiet. I was pretty sure this meant that a baby died. She told me to brace myself. I told her one died, didn't he? She said, no, they both did.

Either you know how I felt at that moment or you can imagine how that felt. 4 years later I sit here crying as I type it. So the next day, on Sept 27, 2006 I delivered two amazing little babies. They had little fingernails, little toes, little penises, little eye lids. They were perfect. Except that they were dead. I didn't hold them. I laid beside them. I touched them. I didn't talk to them, I talked about them. But we can't control how we react when such horrible things happen to us. I wish I would have kissed them and held them. I purposely didn't take a camera with me because this isn't a joyous occasion. This is the worst moment of my life. I didn't feel the need to have a permanent reminder. But the hospital took pictures anyway and I'm so so glad they did. I look at them often.

Tyler was 10 1/2 inches long and 420 grams. Jayden was 10 inches and 220 grams. I was 20w4d.

Since then, my OBGYN wrote up the radiologist. She said he should have seen a problem with the results and gotten me immediate attention.

Since then, I've fallen in love with 2 more babies. Beautiful, healthy, alive.

I will never have a son. I will never see what a little version of my husband would be like. I won't get to see what having twins would have been like. I don't get to worry about mixing them up.

And I will never be the same. Some days I throw myself a pity party and think about what life would be like right now. Right now, they would be 4 years old. They likely would be fighting as much as playing with each other. Getting them ready for preschool would have been a challenge. They would have long eyelashes and a bum chin like their daddy. They would have figured out by now that they can fool people by pretending to be each other. They would be inseparable. And I would have loved to have them in my life. I probably would have complained about how hard it was to raise twins, but been so lucky to have done so. I would have watched a magical connection between brothers. Right now, daddy would have them in the garage building stuff.

But I firmly believe that we all have stuff in our lives to deal with. We all have a cross to bear. My life rocks. I have a great family and friends. I live in the best Country. (except during winter) I have 3 beautiful mini Me's. If I had had Jayden and Tyler, I wouldn't have had Nelly and might not have had Alexis.

But still, some days just suck.








Dennel's sweet babies Tyler and Jayden:

Elijah Update...

Hi everyone, it has been a while. Elijah was recently sent for a MRI of his head since he hasn't had one since he was born. The doctor called me today with the results. The good news is that that most everything looks the same as it did with his last MRI. There are some concerns that he may have a some excess fluid, just a small amount though, but something his doctor wants evaluated further. We are now going to be sent to either Duke or Wake Forrest, depending on who can get us in the fastest. I am so worried about this, Elijah has been through so much.



I'm just upset, and yes I'm angry. I'm not angry at God, I am just angry about the way of this world. I am angry that my child has suffered so much, I'm angry that there is such a thing as Twin to Twin Transfusion Syndrome, that I lost two children to it, and that TTTS is the reason Elijah still has problems. I'm angry because my life is so stressful. I get angry when I see people going about their lives with their healthy children and I hear them complain about the silliest things. I don't want to be this way, I understand that I used to be just like those people. Once, not so long ago my biggest worry was whether or not I would get a A in one of my classes, or whether or not my child would be a football star or a genius.

Now before you get mad I am not saying that you or anyone else for that matter doesn't have a right to worry yourselves with things like this. I am saying just be thankful if that is all you have to worry about. Give God the thanks he deserves for all of the blessings you have. In spite of it all I will still Thank God for my blessings, because I do have blessings.



I am thankful, because I know that even though things seem bad, they could always be worse. I know God has a plan for Elijah's life, I know that Elijah is a miracle and that he will be used to glorify God, he is living proof of the fact that YES, God does still perform miracles.



When Elijah was born he was pretty much as close to death as anyone can get. He couldn't breathe on his own, he was brought through life threatening illnesses and surgeries, even when man had given up hope, God brought Elijah through. I will never stop praising God for all he has done for Elijah, and I trust him to bring us through this valley and to the top of the mountain once again!

Elijah several months ago at a birthday party....

My prayer...

Please bless my children, keep them safe,
give them health and happiness.
Give the other children understanding,
and give them a few true friends.
Give their teachers wisdom,
and let them be kind.
Heal them lord,
but if that is not in your will;
Give me the strength and patience I need,
Let me be their advocate.
Help me to stand up to those who think they know more about my children,
when they really don't have a clue.
Most of all dear Lord,
let them realize how special they are.
Special not because of their disabilities,
but because you created them,
with a purpose.
Let them realize their gifts,
but most of all;
Give them happiness!

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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....