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Family update – New Sibling |
 4-14-08
Just wanted to let everyone know that six months ago on October 16,
2007 Joel and I welcomed our second daughter Elle Evangeline Sewell
into our family. She was 5 weeks early weighing 5.8 lbs and was 18
in. long! No problems at all!!! She has brought so much joy to us
even in the midst of our hearts missing Rhema. We are so blessed,
and we wouldn't trade our girls for anything!!!
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"When I first stumbled on this website, I would read about parents that kept
saying they wouldn't trade the situation for anything. I just didn't
understand because I was in so much pain.
I can honestly say I now
understand. How could I trade our little angel. She has taught us more than
we could ever teach her about love and commitment and joy!" ~Valarie Sewell
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Update 2-19-07
It's been a little over 3 weeks since our princess Rhema left our arms and
went to be with her Creator. Joel and I are doing well. God's grace has been
amazing, and we just have such a wonderful peace of where she is...playing
in Heaven!
The day Rhema passed away, we took her to see her doctor because I noticed
that her breathing started to change - just barely. We got there and they
tested her oxygen level and it was only at about 70%. They said that with
Tetralogy of Fallot that can be very normal, but Joel and I both knew those
were not Rhema's typical numbers. They put her on oxygen for the ride home,
gave her a strong antibiotic in case of a virus, and sent us to get a chest
x-ray. By the time we got home, Rhema seemed pretty stable, just a little
fussy because the oxygen was bothering her nose.
Within hours, she was gone. Late that night, her temperature kept dropping
(even though we had a heating pad under her and two outfits) and she was
getting cold sweats. Joel called our doctor to see what we needed to do and
we were told that if she didn't get her temp up in the next hour, to go to
the hospital. Joel hung up the phone just as Rhema was saying goodbye. When
he told me that we may have to go back to the hospital, I looked at him and
said "I just feel likes it's becoming selfish of us - I can't go back
there". Within minutes of those words she was gone. Even in the midst of the
instant pain, we knew that God had truly answered our prayers. Rhema was
finally healed. And she was able to go while in the arms of her mommy and
daddy. Because of hospice, we were able to hold Rhema for about 4 hours. We
called our family and we all said our goodbyes. I do have to say that when
the funeral home came to pick up our little angel it was very emotional. It
just made everything very final. The following days were long and
exhausting. We made her arrangements the following day, and had the funeral
two days later. It's funny that it was in those days Joel and I were
comforting others. We were just SO proud of Rhema's life that we loved
telling everyone about her who had not yet gotten to meet her. Of course it
was very emotional, but there was grace everywhere we went; overwhelming
grace. Thank you Jesus!
A few days passed before we even knew what the cause of death was to our
peanut. The chest x-ray showed that it was possibly the early stages of a
virus. We went in to meet with Rhema's Ped. and he reviewed everything with
us. He assured us that there was nothing we could have done to prevent the
possible virus, and that because of trisomy 13 her immune system was not
fully developed and her brain and systems were not communicating. He also
said that there was no pain, and that she was a miracle for living 12
weeks...but we already knew that! We left feeling like a ton of bricks was
lifted off of us. It was easy for me to blame myself: did I take her out too
much, did I allow someone that was sick around her? But if someone coughed
when I was getting the mail, she could have caught it that way. We knew that
we loved her for every second of her life and cared for her with everything
in us and I think she knew that, too. We knew she wasn't fighting anymore
and that brought a sense of peace to us.
We miss our Rhema Evangeline so, very much - there are just no words. But
God's ways are bigger than ours. And even though this whole journey has been
a bit overwhelming, we know one day we will go to our Rhema, just as she was
sent to us. She led such a full life for only 12 weeks! Thank you for
letting us share her story. She has forever changed our lives and has stolen
a piece of our hearts forever.
Joel and Valarie Sewell
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1-28-07
Thank you so much for your emails and support. you all have been amazing.
It's just so hard to understand how it could happen so quickly, but God
knew. She was doing so well and then out of no where just passed away. but I
told Joel that she can see now and who better to see than our creator. We
rejoice and mourn. Funeral and service is tomorrow, so please pray for
grace. Val
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1-21-07
My name is Valarie Sewell, and my husband Joel and I are proud parents of
our beautiful daughter, Rhema Evangeline. Rhema was born on November 3, 2006
at 4lbs, 6ozs. Our doctors guessed she would be around 7lbs...boy were they
off!
We were unaware that our little angel had anything wrong with her. In
fact, they called my the "poster child for pregnancy". It wasn't until about
30 min. after my c-section that we were told our first child will never see
her first birthday because of some chromosome defect called Trisomy 13.
Tests later confirmed that she had Full Trisomy 13.
They had just given me a
shot of morphine in my recovery, wheeled me in to see my husband, and then
just dropped the bomb on us. I remember looking at Joel as if it wasn't said
in English to me, almost as if I needed a translation. Surely they had the
wrong room and wrong baby! I don't remember much about that night except
that the doctors were not very kind to us.
We finally got to see our little Rhema and hold her just for a moment. When she was born, she cried and was
breathing, but was just a little blue, so they took her right out of the
room. Even at that point I didn't know anything was wrong. I assumed that
because she was almost a month early, that was normal...
Joel and I had no idea what to expect in the days to come. We were hearing
the worst of everything. They told us that they didn't think Rhema had eyes
and that her eyelids were fused shut. Also, that part of her skull didn't
grow in the back of her head and that there may be brain under the scab, so
be careful. she had a cleft pallat in the very back of her mouth that would
eventually need surgery, and they heard a heart murmur that they weren't
sure about. So, they tell us all of this information and then just leave her
in the hospital nursery. They didn't even try to send her to an intensive
care unit because they were just waiting for her to die.
 Being first time
parents, my husband and I were in such shock that we didn't even know what
we were allowed to ask or request, and we didn't realize that we were
actually being mistreated. That was probably the longest week of our lives.
When the week was up, against our wishes, they release Rhema into the care
of us to take home. We had expressed that we wanted more time to learn how
to care for her, but they insisted because of "insurance purposes" that it
was time we went home. so, we packed up our things and home we went.
We had
connected with a wonderful hospice agency while at the hospital, and they
were there to help us the day we got home. I truly think that hospice was to
take care of us and not Rhema! They were so wonderful in supporting us and
encouraging us in caring for her. They taught us what we needed to know.
Rhema had apnea pretty often when we first got home, but soon outgrew that
completely. The thing we watch for now is when she is startled or trying to
have a bm and is disturbed, she will hold her breath until she is breathing
no more. We've had to do rescue breathing a few times, but now we know we
just do what we have to do. And then I tell her when she recovers that
she'll be in trouble the next time she holds her breath :-)
 Throughout the next couple of weeks, we found a wonderful doctor for Rhema
who helped us get in touch with all the right specialists. He came in and
said that he cannot fix our daughter and he hates that, but he will find out
what's wrong with her to make her comfortable for the time she has with us.
From there, we went to an eye specialist, a feeding clinic, and a
cardiologist. Rhema's heart murmur is something called Tetrallogy of Fallot.
The doctor said that at a follow up apt. we could discuss possible surgery
to correct that. We then went to a feeding clinic where they checked out her
pallat and bottle fed her for a while.
They then told us that her palate was
so small they have actually seen children outgrow that size! Yippeee! So now
she takes about 1/3 of her feedings by bottle and the rest with an ng tube.
And then we made it to the eye specialist. He and his staff came in and,
with two fingers, opened Rhema's eyes! He said that an eye has two parts to
it and he can see both on hers. She has two beautiful blue eyes that her
daddy got to see when he was holding her for the apt. The doctor also told
us that he doesn't see why one day they wouldn't just open. And boy is she
Trying to open them! And remember, the hospital said they were "fused shut".
Oh, and the "skull development" on her head was just were skin didn't grow.
The scabs fell off after one month and I can assure you....no brains came
out!
 Rhema is now 11 weeks old today! She is the absolute joy of our lives. Every
day can still be emotional and a roller coaster, but we just enjoy every
moment we have with her. Rhema is smiling, responding to noise and voices,
sucking her thumb, and playing. This is everything the doctors said she
wouldn't do. She now weighs 7lbs and has grown almost 4 inches since birth.
When I first stumbled on this website, I would read about parents that kept
saying they wouldn't trade the situation for anything. I just didn't
understand because I was in so much pain. I can honestly say I now
understand. How could I trade our little angel. She has taught us more than
we could ever teach her about love and commitment and joy!
We are believing for a miracle. Rhema means the Spoken Word of God and that
is our prayer over her every day!
Valarie Sewell
VSewell@livingwithtrisomy13.org
Joel Sewell
JSewell@livingwithtrisomy13.org
To see journals Joel writes along this journey, feel free to visit
http://thejoel82.blogspot.com
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Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
Translation