February 27, 2013
To our dearest Family and Friends,
It truly is hard to contemplate this final update on our sweet baby girl. We feel like so many of you have shared this tremendous journey with us. As I have attempted numerous times over this past few days to sit down and type this last update I just could not make myself do it. There was part of me that felt like once I did, it meant it was over. Part of me still does, as it is just one more step toward the final event.
As most of you know our "Good and Perfect Gift" returned to live with her Father in Heaven last Friday, February 22, 2013. The outpouring of love and support has been truly staggering. My children have been loved through this, the details of life have been covered by others, the simple expressions of love, and the shared tears have carried us in this most difficult of times. We have had many questions and desires to know how this came to be. Still, I shake my head and can I honestly say "I don't know!" But I wanted to share some of the details of this journey that you might be able to see as we have that the gifts of grace and the tender mercies abound. It is truly humbling to feel the sustaining power of the Spirit of God. We have been sheltered, we have been supported, we have not been left comfortless. We ache to hold our most precious gift but our tears are stilled by the knowledge that one day we will.
Wednesday the 20th, was our sweet Campbell's 4th birthday. As we had family visiting Disney from out of town we thought it would be a fun surprise to take him for his birthday as well as spend the day with family. We got into California Adventure park at about 10:10 am and met up with family about 10:30. It was so fun to introduce Chloe to new cousins and her Great Aunt Diane. Diane even got a smile out of her. Campbell begged to go on the Toy Story Mania ride even though the wait was 55 minutes. The majority of the group went on California Screamin' and my two cousins and our littlest ones waited and talked in the toy story line. After about 20 min. Chloe started to get fussy and was ready to eat. I fed her in line while sitting in her front pack infant carrier - just like I always do. When she stopped sucking I turned her little head to the side and positioned her to sleep as she always does. We then got onto the ride, Campbell had a great time. We then gathered strollers and regrouped to head to the little mermaid ride about a 3-5 minute walk. Once there the line was moving smoothly and we just followed the line and walked onto the ride. Campbell was so excited to be a big boy and was sitting in his very own clam shell 4 cars in front of me. Noah and Em were in the car right in front of us and Meisja, my cousin, and I were the end of our group. After getting a head count and making sure that everyone was on the ride, Meisja asked how Chloe was doing. I said that "she was fine and sleeping but that I wanted to check her because I'm always afraid they will stop breathing in these things." This I said as I was unlatching the clasp. As I did she flopped out not breathing. I tried to wake her. Meisja, through some miracle was able to free herself from the bar and jumped out to stop the ride and get help. I started breathing for Chloe. Being unable to get out of the ride I continued breathing until Meisja returned. She then took Chloe to run to the front. I freed myself from the ride, caught up, took Chloe and ran to the front where 911 had been called. A woman started CPR and I called my sweet husband with the news. He said that he was on his way. During that time an ER doc was exiting the ride with his family, and he immediately began CPR. Three families behind him was a NICU nurse who began aiding in the process. Shortly there after the Disney paramedics arrived. They set up the defibrillator pads. Each time the scan was run it came back "shock not warranted" and so they would resume CPR. A few minutes later the EMT's arrived and shortly had us on our way to Western Medical. Once there, a team of doctors worked to resuscitate her. After an hour they had her stable enough to call Children's Hospital of Orange County - CHOC. We were able to speak to the children who had come to the waiting room with my aunt, uncle and cousin. We told them that Chloe was stable and being transferred to a hospital that works only on children, so she would be in good hands. After lots of hugs and strong convincing that Chloe wouldn't want them to worry and would rather they be having fun, they agreed to go back the the park with our family. It truly was Chloe's gift to Campbell to return for a time so that he could have his birthday be a joyful event for the rest of his life. Disney gave the entire family, all 19 of them the royal treatment. They feted Campbell for his birthday and made the rest of the day wonderful for my sweet kids. The kids sent us video clips of happy thoughts for Chloe and expressed their concern but looked like they were enjoying themselves. Truly, a tender mercy.
The team at CHOC got Chloe into a room and as soon as Spencer got there took us too a room while they tried to place a central line and arterial line. We sat in the little room praying, crying and pleading with God for a miracle. Realizing that the Lord giveth and the Lord taketh away, but praying that this wouldn't be one of those times. 3 1/2 hours later we finally got to see her. They were trying to warm her up as she was terribly cold. They said that the goal was to get her stable so that they could do a CT and to keep her that way through the night so that the kids could come say good bye in the morning. Chloe had come full circle from when she was born. She was going out the way she came in. We could only hold her little feet and kiss her sweet head. We prayed and pleaded with her to fight. Knowing that God could provide that miracle but knowing that this time the miracle he had planned was different. I couldn't sleep. I only wanted to be close to her - to love her and take her in every moment I had left. Our little fighter made it through the night, and we were able to have a very sweet, and hard but tender experience with the children as they said their good byes. We were able to make handprints of the family and share that time telling stories of things we loved. It was very healing for the children, and us for that matter, to have a little piece of Chloe to take with us. That evening after the children left, we met with One Legacy, the organ donation team. Chloe had had a few struggles during the day maintaining but that night began to stabilize. It was almost as though once she knew she had one more job to do she set out to do it. We then shared a very sacred night. Loving her. Thanking her. Giving her her marching orders for the next life - which child would need what, etc. I slept for 1/2 hour, just enough to rest my eyes. It was all I needed. I was being carried, and the Spirit was made manifest. That morning, as she had been stable all night we had the chance to hold her. I insisted Daddy go first because of his words, "I didn't even get to hold her that morning." It was so touching to see this loving father cradle his daughter for the last time. When it was finally my turn I didn't ever want it to end. I so wanted to just cradle her and rock the sadness away. A dear friend arrived, and through yet another tender mercy was able to get the photographer who was scheduled to take her picture Saturday, to come and take some photos of her tiny hands and feet. A true gift I will treasure always. Yet another tender mercy. Chloe held on strong. At 4 we found out that her kidneys had been assigned and that the Operating Room was scheduled for 7 pm. They said that they had gotten clearance for us to be able to scrub in and be there as well. It gave us some relief in an odd sort of a way. The time was set, her life would benefit another, and we were moving forward. The nurse said that she her temp had been stable long enough that we could give her a bath and get her ready for her next big adventure. It was truly one of the most precious experiences I have had as a mother. The chance to wash, massage and prepare this tender child to return her home to that God which created us all. I felt as though I was doing this for Chloe. My last act of tender care. Grandma was able to be there to help and it was a very tender moment. We dressed her and made her pretty and comfortable. The One Legacy team came in at about 5:15 to say that the transplant doctor had been reviewing Chloe's labs. He said that her kidney still looked good but her liver was showing signs of distress. He said that the odds that the kidneys had experienced a similar blight that may not yet be showing in her labs was too high and that they would no longer be able to use them. This meant that we would no longer need to be in the OR at the time of her passing. It also meant that now the hardest decision of all was placed back on us. Within minutes of our discussion with the team, Chloe's nurse came in and said she was starting to go down hill. We were crying over her saying how hard it was because now mama and daddy had to say, "it is time." She had fought so hard to be able to give that gift. When it was no longer an option she let us know that it was time and started quickly going down hill. It was as though once she new she didn't have to hang on to benefit another she started to wind down. We frantically tried to email and let the world know to pay attention - One of God's choicest blessings was getting off. I needed someone to take note that my baby was leaving. Once we had notified our dear ones, we prepared for what the doctors said could be an hour or more. They prepped us for the sometimes violent experience of Chloe trying to breathe. They said that as Chloe was still breathing over her ventilator the odds of her taking awhile to pass would be high. (As an aside, we wanted you to know that the one thing that we all prayed for collectively during pregnancy and after her birth, a healthy heart, is ironically the one thing that will be passed on as her heart valves are going to go to others. God works in mysterious ways)
I shared with the children how I went down the hall to the bathroom to get ready for the end. I lost it - completely lost it. I needed Heavenly Father to know that this was not my will! - but that if this was the mountain we had to climb then I would turn it over to Him. I had to say out loud, "Dear God, not my will be done, but THY will be done." As soon as I turned it over to him, my sobbing ceased, my tears were stilled and my heart comforted. I found the strength to go back down that long hall and together we held our "good and perfect gift." The doctors had prepped us for a long and somewhat violent journey as she fought for her last breath, but for Chloe it truly was time. She was ready. We wrapped her in the softest blanket that grandma and grandpa had just brought her. Mama held her and Daddy wrapped his arm around us both. We did our best to envelope her in the arms of our love as she peacefully passed. She didn't even take one breath. After just three minutes the nurse said, "She's gone." Spencer and I looked at each other, and I whispered, "She's not gone, she's just not tied to her body anymore." Her spirit literally filled the room - it was pervasive and powerful. We just sat their holding her body for more than 2 and 1/2 hours, but soaking in her spirit. It was the most singularly powerful spiritual experience of my life. A true gift and infinitely tender mercy to have been there when this most precious daughter of God completed her second estate by gaining a body and 7 1/2 months later let it go.
Thank you for sharing this most precious journey with our family. Your outpouring of love and support has been truly overwhelming. You are God's hands and have carried us through. We need you and want to be able to share this last part of her journey with you- for we know she loved you too. We will be forever grateful for each and every act of love.
Spencer, Melissa, Ethan, Carter, Emma, Noah, Campbell and Chloe
It truly is hard to contemplate this final update on our sweet baby girl. We feel like so many of you have shared this tremendous journey with us. As I have attempted numerous times over this past few days to sit down and type this last update I just could not make myself do it. There was part of me that felt like once I did, it meant it was over. Part of me still does, as it is just one more step toward the final event.
As most of you know our "Good and Perfect Gift" returned to live with her Father in Heaven last Friday, February 22, 2013. The outpouring of love and support has been truly staggering. My children have been loved through this, the details of life have been covered by others, the simple expressions of love, and the shared tears have carried us in this most difficult of times. We have had many questions and desires to know how this came to be. Still, I shake my head and can I honestly say "I don't know!" But I wanted to share some of the details of this journey that you might be able to see as we have that the gifts of grace and the tender mercies abound. It is truly humbling to feel the sustaining power of the Spirit of God. We have been sheltered, we have been supported, we have not been left comfortless. We ache to hold our most precious gift but our tears are stilled by the knowledge that one day we will.
Wednesday the 20th, was our sweet Campbell's 4th birthday. As we had family visiting Disney from out of town we thought it would be a fun surprise to take him for his birthday as well as spend the day with family. We got into California Adventure park at about 10:10 am and met up with family about 10:30. It was so fun to introduce Chloe to new cousins and her Great Aunt Diane. Diane even got a smile out of her. Campbell begged to go on the Toy Story Mania ride even though the wait was 55 minutes. The majority of the group went on California Screamin' and my two cousins and our littlest ones waited and talked in the toy story line. After about 20 min. Chloe started to get fussy and was ready to eat. I fed her in line while sitting in her front pack infant carrier - just like I always do. When she stopped sucking I turned her little head to the side and positioned her to sleep as she always does. We then got onto the ride, Campbell had a great time. We then gathered strollers and regrouped to head to the little mermaid ride about a 3-5 minute walk. Once there the line was moving smoothly and we just followed the line and walked onto the ride. Campbell was so excited to be a big boy and was sitting in his very own clam shell 4 cars in front of me. Noah and Em were in the car right in front of us and Meisja, my cousin, and I were the end of our group. After getting a head count and making sure that everyone was on the ride, Meisja asked how Chloe was doing. I said that "she was fine and sleeping but that I wanted to check her because I'm always afraid they will stop breathing in these things." This I said as I was unlatching the clasp. As I did she flopped out not breathing. I tried to wake her. Meisja, through some miracle was able to free herself from the bar and jumped out to stop the ride and get help. I started breathing for Chloe. Being unable to get out of the ride I continued breathing until Meisja returned. She then took Chloe to run to the front. I freed myself from the ride, caught up, took Chloe and ran to the front where 911 had been called. A woman started CPR and I called my sweet husband with the news. He said that he was on his way. During that time an ER doc was exiting the ride with his family, and he immediately began CPR. Three families behind him was a NICU nurse who began aiding in the process. Shortly there after the Disney paramedics arrived. They set up the defibrillator pads. Each time the scan was run it came back "shock not warranted" and so they would resume CPR. A few minutes later the EMT's arrived and shortly had us on our way to Western Medical. Once there, a team of doctors worked to resuscitate her. After an hour they had her stable enough to call Children's Hospital of Orange County - CHOC. We were able to speak to the children who had come to the waiting room with my aunt, uncle and cousin. We told them that Chloe was stable and being transferred to a hospital that works only on children, so she would be in good hands. After lots of hugs and strong convincing that Chloe wouldn't want them to worry and would rather they be having fun, they agreed to go back the the park with our family. It truly was Chloe's gift to Campbell to return for a time so that he could have his birthday be a joyful event for the rest of his life. Disney gave the entire family, all 19 of them the royal treatment. They feted Campbell for his birthday and made the rest of the day wonderful for my sweet kids. The kids sent us video clips of happy thoughts for Chloe and expressed their concern but looked like they were enjoying themselves. Truly, a tender mercy.
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| A handy family tree |
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| Tender kisses - Tender time |
I feel like I've accepted, embraced, and led out with every turn and barrier in our way in this journey with our dear Chloe. I did not see this turn coming. Although I question my own strength, I know "in the strength of the Lord I can do all things." So, we will rely on His strong arm. God is good. Spencer and I were talking, saying that even if we knew that we would be wading through this deepest sorrow in such a short time, we would still not trade this chance to have Chloe for a daughter. The lessons she has taught - the miracles she has made manifest - the hearts she has softened - all choice and priceless above rubies.
Her presence continues to be felt. I was sharing with my children some of Chloe's final moments on earth. I couldn't tell them enough how strong and pervasive her spirit is. I was sharing with them how I know she has a mission to fulfill in God's house and that she is now there preparing the way for us. I shared with them that as I start to get overwhelmingly sad, when I am focusing on what I have loss and what I miss, if I pause and repeat to the Lord not my will, I am flooded with the spirit and that peace returns. I would never trade the gifts of grace, love, peace and faith that we have found by having the gift of Chloe in our life.
Emma was very sad that she was not going to be able to celebrate her sister's first birthday. She had already started thinking about what she wanted to do. As such we are going to be holding a "Graduation Celebration for our dear Chloe Jane Walch." We would love it if you would join us to honor her life and show my other children the love that surrounds them at this most difficult of times.
On March 8th we will be holding the services at the Church of Jesus Christ of Latter-day Saints, 4550 Raymond Avenue, La Crescenta, CA 91214. The viewing will be from 2:00 - 3:00 p.m. and the funeral service will be held at 3:30 p.m. We will be having a balloon send off and then returning into the church for Chloe's Celebration immediately following the service. Each of the children have chosen their favorite treat to share as well as other special activities. We are looking forward to sharing Chloe's life and love with each of you.
In lieu of flowers we are asking that those of you who would care to do something, make a donation to Club 21 in Pasadena in Chloe's name. This a fabulous organization that believes, "together is better." They were instrumental in helping us on our journey and we know Chloe would love to see their work continue. This link to their website will show you how to connect - http://clubtwentyone.org Their is a donate button on the home page and a place to put in honor of… Their phone number is, (626)844-1821.
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| Hand in Hand in Hand |
With gratitude,
Spencer, Melissa, Ethan, Carter, Emma, Noah, Campbell and Chloe
September 19th, 2012
Hello dear family and friends,
I feel as though it has
been a lifetime since we last sent an update. Chloe has a sweet little
soul that continues to bring great joy to our family. I was sharing with
a friend that I felt I was being a little "rude" toward my other
children to say that about Chloe. It almost felt that by saying how sweet
she is, that I was somehow diminishing the joy our other children have brought
in to our home. I don't mean to do that by any means. It is just that
there is truly something palpable about her little spirit.
She elicits great love from each and every member of our family.
Our home is a definitely a better place with her here!
The past few weeks have
been filled with emotion. Some very tender and others extremely
difficult. I feel like that will be part of this journey with this little
miss. As another friend shared, "the highs are high and the lows are
low!" We are just beginning to comprehend what that means.
Over labor day weekend,
we had the chance to bless Chloe at church. It is similar to a
christening or dedication ceremony in other churches. We were grateful to
the family that was able to make it and missed those who couldn't come.
It was a very tender experience and we felt close the the spirit.
One of the things that was said was that she was blessed with courage,
tenacity and a strong will to live. That she was willing to come to earth
to receive a body even if that body was less than perfect. That she had
already accomplished her primary reason for coming to earth, and nothing more
was required of her. One of the most touching things to me was what
followed, "that we bless you with one additional responsibility, which is
to help your parents and siblings to live in such a manner so that they can
live with you forever. We bless you with patience as you teach your
family to forsake those things in this world that have no eternal consequence
and to cling to those things that matter most." She will definitely
need that patience when it comes to us. She is already teaching us to
remember what matters most!
We are trying to remember
that as we settle into a new school year and getting everyone where they need
to be. Chloe now has as many appointments and things on the schedule as
any one of us, in fact, she probably has more. She has started
occupational therapy, physical therapy, and infant stimulation therapy once a
week. It has been fun to see her start to get a little more control of
her floppy little body. With the right positioning she is able to find
her hands and raise her head. She is tolerating tummy time a little more
each day and does her best work when the little boys are on the floor with
their heads down at her level. Her skin is so paper thin and soft.
I love to touch kiss it. The massage part of therapy is a special
time for me!
Her overall health seems
to be great. She is gaining weight and loves eating. She still gets
tired easily but is able to breastfeed a little more each day. She is
working at smiling. She's not quite there yet but we've caught a glimpse
of fleeting ones from time to time, and can't wait for the big one! She
has big beautiful eyes. Her visit to the opthalmologist revealed that she
is farsighted and she has one eye that is stronger than the other. He
said that he wasn't going to use corrective lenses yet because he felt that her
vision would develop, and he would just monitor her. Her heart is doing
wonderfully and we are so grateful for this biggest blessing.
Chloe had hearing test
this last Tuesday at Children's Hospital. The Audiologist was fabulous.
Spencer and I were very nervous about Chloe actually making it through
the test. She had to stay asleep for the entirety of the test, typically
2 hours. They told us that if she didn't stay asleep we would have to
reschedule and repeat the test at a later time, possibly with sedation.
They had told us to keep her sleep deprived and not fed so that we could
feed her once we got there and hopefully get her to pass out. We tried to
keep her awake that morning but she kept falling asleep. There is simply
no control with a newborn baby. We had to borrow a bag of ice from a
friend and had to keep touching her with it on the way to the hospital to keep
her awake. By the time she got her mini facial and the electrodes
attached so that she could start feeding it was about 1:40. She was fell
asleep and the test was under way by about 2:00. The room was dark and
quiet and Chloe and Daddy had a good little nap going on. I was holding
her for the test. They started with the right ear. After awhile I
could hear sound coming from the tiny little earphone. At one point, she
held a little cube shaped device on her skull behind and a little above her
ear. I could feel the vibrations through the pillow that her head was
resting on. I figured it wasn't a great sign when Chloe barely moved.
The audiologist then proceeded with the left ear. The test
concluded around 4:10 and Chloe was just beginning to stir at that point,
another blessing! We had had some fun conversations with the Audiologist
during the test and felt a connection. She started the next conversation
with you could probably tell by how loud the sounds were that it is not good.
She proceeded to tell us that sweet baby girl has profound hearing loss
in her right ear and severe hearing loss in her left ear. Spencer
commented later that it is never a good thing when something has to have a
category worse than severe. She explained that that meant with her right
ear, without hearing aids sounds like a lawn mower or airplane over head will
not be heard. But with hearing aids she may be able to hear very loud
sounds. She said that in her left ear she would not be able to hear
sounds like a telephone or dog barking and that sounds that are loud to a
normal hearing person will be very soft or not heard at all. She said
that with hearing aids most children would be able to hear speech and most
sounds, except for the softest sounds like f, s, th. Most kids with DS who
have hearing issues have conductive hearing loss that can sometimes be
corrected. Chloe is a stand out kinda girl, who is part of the 4% that
have sensorineural hearing loss and therefore cannot be corrected.
I spent the majority of
the next two days on the phone with insurance, CA hearing screen, CA Children's
services, and on hold. I've definitely had my moments, good and bad.
At one point I just had to hold my sweet baby girl and cry. Then we
sat down in front of the computer and itunes. Turned the sub woofer as
high as it would go, set the equalizer for bass booster, and cranked the
volume. I then put on Chloe's theme song, Bruno Mars "Just the Way
You Are" and let it roll. I could feel the puffs of air coming from
the sub woofer and the vibrations coming through the floor. Mommy cried
and smiled at my little one who is truly "amazing just the way you
are" and her little eyes widened and darted around. I may go deaf in
the process but at least I know she could hear some of it!
Chloe is being referred to
UCLA for their Cochlear Implant Program. She has her first appointment
with them next week. We are required to meet with the Audiologist and
Social Worker. Chloe will be fitted for hearing aids then and should
receive them in about three weeks later. The FDA protocol requires that
she wear the hearing aids for 6 months before she is eligible to receive the
implants. Most tend to be done at about 12 months of age. There
are a lot of questions that we need answered and choices to make. They
say that people tend to do better interpreting speech when two implants are
received. They also say that you can do one implant at a time but most
people report not liking the second implant as well as the first. She
likened it to growing up with your grandma's recipe for cornbread. No
matter how good the other corn breads might be it is still never as good as
grandmas. The other issue is that once they puncture the cochlea to place
the electrodes they lose all residual hearing they may have had. So to
lose the chance of hearing more "normal" sounds with a hearing aid in
her left ear for better possibility of better processing with two implants
seems like a tough choice. We will have to gather a lot more information,
talk to as many people as have gone through it as possible and spend a lot of
time on our knees to figure this out.
The silver lining is that
once she's asleep she sleeps really well. The little boys can be as crazy
as they usually are and no one is the worse for wear. The other blessing
is that we have already started to learn some signs and now we get to do it
even more. Chloe is again opening our world to another population of
people that we may not have had the chance to interact with before. Kids
with DS also tend to be better visual learners than auditory learners. So
she will have the benefit of seeing the words in her world as well.
Every day we make the
choice to focus on the good. There's a quote by President Monson, where
he talks about the ABC's- Attitude- "the greatest revolution of our generation is the discovery that
human beings, by changing the inner attitudes of their minds, can change the
outer aspects of their lives" Believe in
yourself - "don't limit yourself and don't let others convince you that
you are limited in what you can do" and Courage - "sometimes courage is the little voice at the end of the day that
says, I'll try again tomorrow." So, that's what we are going
to do! Work on our ABC's. Somedays are better than others.
That's when we hold our sweet baby girl, soak in her spirit and say we
will try again tomorrow.
We feel blessed to have
her. She is teaching us. Even if she can't hear her theme song now,
one day she will. (even if it's in the next life!) Like her song
says, "when you smile, the whole world stops and stares for awhile, 'cause
girl you're amazing, just the way you are." I think she will not
only show us all how amazing she is, but something tells me she will help each
of us see that in ourselves as well. God works in mysterious ways.
We are grateful for her and the amazing gift that you each are in our
lives. Thank you for your prayers and support. We need them and
appreciate you keeping them coming! We will keep you posted as things
evolve. Have a great week!
Much Love,
Spencer, Melissa and
kiddies
August 6th, 2012
Hello All!
Where does the time go?! I can't believe our sweet little girl is now
one month old. She is a patient little soul who has brought much joy to
our home. She makes a lot of funny little faces and has beautiful
bright eyes. We all adore her. The first words in our house every morning are
still "where is sister" or "can I hold baby." I have been meaning to
send out an up date but the time seems to just disappear. I actually
started this on the 29th and never got it done. She will actually be 6
weeks old tomorrow. My days seem so full but sadly not much gets done.
It truly has been a blessing that she was born in the summer.
Our life of late has been a series of appointments. The peak was when
we had 7 different doctor/therapist appointments in 3 days. I guess this
will be our new norm, at least for awhile. The trick will be figuring
out how to balance old practices and expectations with new demands and
desires. The kids and Spencer have been great at dealing with the
changes and we will figure out the best new means of operating.
Hopefully everyone will feel their needs are being met and that life is
just as fun, if not more, with their new little sister.
Chloe is doing great! She is quite the little miracle. The doctor just
Where does the time go?! I can't believe our sweet little girl is now
one month old. She is a patient little soul who has brought much joy to
our home. She makes a lot of funny little faces and has beautiful
bright eyes. We all adore her. The first words in our house every morning are
still "where is sister" or "can I hold baby." I have been meaning to
send out an up date but the time seems to just disappear. I actually
started this on the 29th and never got it done. She will actually be 6
weeks old tomorrow. My days seem so full but sadly not much gets done.
It truly has been a blessing that she was born in the summer.
Our life of late has been a series of appointments. The peak was when
we had 7 different doctor/therapist appointments in 3 days. I guess this
will be our new norm, at least for awhile. The trick will be figuring
out how to balance old practices and expectations with new demands and
desires. The kids and Spencer have been great at dealing with the
changes and we will figure out the best new means of operating.
Hopefully everyone will feel their needs are being met and that life is
just as fun, if not more, with their new little sister.
Chloe is doing great! She is quite the little miracle. The doctor just
said on Friday that she is
doing well enough with her weight gain that I
can continue feeding every 2 hours in the day time but can let her sleep
for 4-5 at night. Last night she actually slept from 1:00 to about
5:20. It felt great to sleep a little more. It's amazing how life is so
relative isn't it?
We had her follow up cardiology appointment and the doctor was pleased.
It looks like the valve, PDA, that was supposed to close at birth, has
almost completely closed on its own. The hole between her two atria is
almost completely closed as well. The VSD, or hole in the ventricle is
in an odd location in the muscle and not in the more typical location of
the connective tissue. Apparently this is a good thing and she down
graded it from moderate to small. She said that we should continue to
have her monitored by the pediatrician but that she didn't need to see
her for 6 months. We were thrilled to say the least!
She had her follow up hearing test on the 16th. She failed her hearing
test in both ears. The test is an ABR test that uses electrodes placed
around her head to monitor the response of the auditory nerve over a
range of decibels. Her right ear showed no response. Her left ear had
can continue feeding every 2 hours in the day time but can let her sleep
for 4-5 at night. Last night she actually slept from 1:00 to about
5:20. It felt great to sleep a little more. It's amazing how life is so
relative isn't it?
We had her follow up cardiology appointment and the doctor was pleased.
It looks like the valve, PDA, that was supposed to close at birth, has
almost completely closed on its own. The hole between her two atria is
almost completely closed as well. The VSD, or hole in the ventricle is
in an odd location in the muscle and not in the more typical location of
the connective tissue. Apparently this is a good thing and she down
graded it from moderate to small. She said that we should continue to
have her monitored by the pediatrician but that she didn't need to see
her for 6 months. We were thrilled to say the least!
She had her follow up hearing test on the 16th. She failed her hearing
test in both ears. The test is an ABR test that uses electrodes placed
around her head to monitor the response of the auditory nerve over a
range of decibels. Her right ear showed no response. Her left ear had
a minor response at 10,000
but nothing else. It was a sad day for mama.
I think mostly because it was a physical manifestation of the battles she
I think mostly because it was a physical manifestation of the battles she
will continually be
fighting. Emma seems the most concerned, praying
that Chloe will be able to hear so she can talk/sing with her sister.
That being said, it is a totally doable challenge. If we got to chose
heart or hearing we would definitely chose hearing. The ENT at
Children's Hospital said that using the smallest otoscope he could catch
a glimpse of her ear drum. From the little he could see he couldn't
tell if there was an obstruction. So, at this point she is referred to the
audiology department at Children's Hospital to undergo further testing.
We are hopeful that it is still just a fluid issue. If so, the best
case scenario is that they will place tubes once her ears are big enough to
get them in, hopefully drain the fluid and then it's possible she will
need some amplification with hearing aids. Worse case scenario, if the
auditory nerve is intact she will get cochlear implants around 9 months
to a year. If no functioning nerve then we know of an ASL teacher who
will come to our house. Either way it's a good thing we have started
learning some sign. Apparently we will all be learning it a little more
in depth. Once again, she is opening up a new part of the world to us
and expanding our horizons.
I wanted to tell you all THANK YOU SO VERY MUCH for the words of love,
the phone calls, the gifts, the food, the emails, the help with kids,
the support and the patience as we have been learning how to manage on this
journey. Please know that they are much appreciated. I am sorry that I
haven't gotten back to you all on an individual basis. Just know I
would love to and hopefully soon will find the time.
I heard a great quote today by CS Lewis. In it he said, "In friendship
we think we have chosen our peers. But, in reality, a few years
difference in dates of our birth, a few more miles between houses, the
choice of one university over another, the accident of a topic being
raised or not raised at a first meeting, any of these chances might have
kept us apart. But, for a christian, there are no strictly speaking
chances. A secret master of ceremonies has been at work. Christ who
said to the disciples, "ye have not chosen me, but I have chosen you"
can truly say to every group of friends, "ye have not chosen one another but
I have chosen you for one another." The friendship is not a reward for
our discriminating good taste in finding one another out, but it is the
instrument by which God reveals to each one of us the beauties of the
others." I so appreciate the beauty each of you bring to my life. I am
deeply grateful that you have all been so willing to see the beauty in
our precious little girl.
I believe that the Lord has put us in proximity on purpose. I am so
very grateful that the Lord knows who and what I need in my life! I feel so
richly blessed on every level. Thank you!
Have a great week. We love you!
Melissa, Spencer, Ethan, Carter, Emma, Noah, Campbell and Chloe
that Chloe will be able to hear so she can talk/sing with her sister.
That being said, it is a totally doable challenge. If we got to chose
heart or hearing we would definitely chose hearing. The ENT at
Children's Hospital said that using the smallest otoscope he could catch
a glimpse of her ear drum. From the little he could see he couldn't
tell if there was an obstruction. So, at this point she is referred to the
audiology department at Children's Hospital to undergo further testing.
We are hopeful that it is still just a fluid issue. If so, the best
case scenario is that they will place tubes once her ears are big enough to
get them in, hopefully drain the fluid and then it's possible she will
need some amplification with hearing aids. Worse case scenario, if the
auditory nerve is intact she will get cochlear implants around 9 months
to a year. If no functioning nerve then we know of an ASL teacher who
will come to our house. Either way it's a good thing we have started
learning some sign. Apparently we will all be learning it a little more
in depth. Once again, she is opening up a new part of the world to us
and expanding our horizons.
I wanted to tell you all THANK YOU SO VERY MUCH for the words of love,
the phone calls, the gifts, the food, the emails, the help with kids,
the support and the patience as we have been learning how to manage on this
journey. Please know that they are much appreciated. I am sorry that I
haven't gotten back to you all on an individual basis. Just know I
would love to and hopefully soon will find the time.
I heard a great quote today by CS Lewis. In it he said, "In friendship
we think we have chosen our peers. But, in reality, a few years
difference in dates of our birth, a few more miles between houses, the
choice of one university over another, the accident of a topic being
raised or not raised at a first meeting, any of these chances might have
kept us apart. But, for a christian, there are no strictly speaking
chances. A secret master of ceremonies has been at work. Christ who
said to the disciples, "ye have not chosen me, but I have chosen you"
can truly say to every group of friends, "ye have not chosen one another but
I have chosen you for one another." The friendship is not a reward for
our discriminating good taste in finding one another out, but it is the
instrument by which God reveals to each one of us the beauties of the
others." I so appreciate the beauty each of you bring to my life. I am
deeply grateful that you have all been so willing to see the beauty in
our precious little girl.
I believe that the Lord has put us in proximity on purpose. I am so
very grateful that the Lord knows who and what I need in my life! I feel so
richly blessed on every level. Thank you!
Have a great week. We love you!
Melissa, Spencer, Ethan, Carter, Emma, Noah, Campbell and Chloe
June 30th, 2011
Little Miss Chloe had a
stellar day! She is one tough cookie. Her billi
levels looked great and her sats on room air close to perfect. When the
doctor saw how well she was feeding, she said that she would send her
home if we would bring her back for tests. Soo...this evening she came
home!!! I've never seen the other 5 kiddos so excited, especially
Campbell. It's like Christmas, but better.
Quotes of the day include, "in fact, she's just adorable" - Noah "This
whole pregnancy and stuff was so worth it mom"- Emma "Can I call and
tell my friends? It's just so great" - Carter "Can I be the first to
hold her? I love her soo much. I'm just so glad she's home" - Ethan
"I'm soooooo excited (at the top of his lungs). I just love you baby
"thister" - Campbell with lisp.
We feel blessed beyond measure to have this little miracle girl in our
presence. What a gift. Thanks for your prayers, love and support. We
need them. We will go to the cardiologist next week and see where
things will go from there. Her prognosis looks good. We are hopeful. We are
grateful for her fighting spirit and look forward to all she will teach us.
We love you!
Melissa, Spencer and Kiddies - All 6 home and safe where they should
be!!
Does it get any better? :)
The first time the sibs got to be with her and see her eyes open!
levels looked great and her sats on room air close to perfect. When the
doctor saw how well she was feeding, she said that she would send her
home if we would bring her back for tests. Soo...this evening she came
home!!! I've never seen the other 5 kiddos so excited, especially
Campbell. It's like Christmas, but better.
Quotes of the day include, "in fact, she's just adorable" - Noah "This
whole pregnancy and stuff was so worth it mom"- Emma "Can I call and
tell my friends? It's just so great" - Carter "Can I be the first to
hold her? I love her soo much. I'm just so glad she's home" - Ethan
"I'm soooooo excited (at the top of his lungs). I just love you baby
"thister" - Campbell with lisp.
We feel blessed beyond measure to have this little miracle girl in our
presence. What a gift. Thanks for your prayers, love and support. We
need them. We will go to the cardiologist next week and see where
things will go from there. Her prognosis looks good. We are hopeful. We are
grateful for her fighting spirit and look forward to all she will teach us.
We love you!
Melissa, Spencer and Kiddies - All 6 home and safe where they should
be!!
Does it get any better? :)
The first time the sibs got to be with her and see her eyes open!
Getting into the car. We had to wait so long for the wheel chair
(hospital rules) she passed out.
Her shirt says Chloe #6 - Emma couldn't wait to put the bow on her head.
I'm afraid she's in for a lot of dress up.
June 29th, 2011
This is a picture of the
first time we saw her.
The first time I got to hold her two days later.
Chloe kickin back hands behind her head catching some rays under the
billi lights
.
Hopefully the next picture will be of her coming home! Love you all!
Hopefully the next picture will be of her coming home! Love you all!
June 29th, 2012
Hello Dear Family and Friends,
Hello Dear Family and Friends,
Where to begin...life is amazing and
crazy all at once. For those of you who haven't yet heard baby girl
arrived Monday June 25th at 9:48 p.m. It was a day that unravelled in a
comedy of errors that should have been an indicator as to how this experience
would unfold. Dr. DeVore the perinatologist decided at our appointment Monday
afternoon that things were looking less than ideal. He sent me directly
to the hospital to proceed with delivery. Something that typically goes
relatively fast for me, but that was not meant to be. After a number of
different mishaps, three blown veins, water not really broken, no longer
working epidural, she arrived at 9:48 p.m. We got to see her bottom
as the doctor held her upside down for just a moment and then the NICU team
took over. They worked in hushed tones in the corner and called in
another doctor from the NICU. We explained what we knew of the state of
her heart as per doctor DeVore and within another few minutes the NICU team and
baby girl were gone. Seconds after that the room was completely empty
except for Spencer and I wondering what had just happened. We didn't get
to see or hold her and the empty feeling was striking to say the least.
We finally got word that it would be
at least an hour before we would get to see her. Then the update came at
least two hours. Finally around 12:30, Spencer and Tyson we are able to
go in and see her as they would only allow two people beside her at a time.
We wanted them to be able to give her a blessing. I then got to see
her around 12:50. She was covered in wires but stable and asleep.
She was 6lbs 15oz and 20 1/4". It was nice to see a little
pudge on this tiny little body who had already gone through so much. The
other thing that was so touching for me as the mommy was coming in to see
Spencer leaning over her smiling and looking at her the way only a daddy can do
as he looks at his little girl.
The next 24 hours are still a bit of
a blur. We got to see the Cardiologist in the morning who said that she
had a moderate sized hole (VSD) in an odd place in the muscle between the
ventricles. She also said that she had PDA, a valve that typically closes
at birth but hers had not. That coupled with the fact that her heart was
stressed and not contracting properly and so the blood that was being
circulated was a mixture of oxygen rich and oxygen poor blood. She also
had persistent pulmonary hypertension (PPHN). This meant that the
pressure in her lungs was greater than the pressure in her body. Because
blood flows to areas of least pressure, the blood was flowing to her body
before going to her lungs. She was in rough shape but stable. She
stayed that way for most of Tuesday. At one point her oxygen levels were
up to 54% because they were struggling to keep the PPHN under control.
Wednesday morning was less hopeful. They had not been able to wean
her off of the oxygen as hoped and she was still showing signs of heart stress.
The doctor would not give us any kind of time line and we left the NICU
that morning discouraged to say the least. The good news although she had
not gotten better she hadn't gotten worse. We held on to that.
I had to be discharged from the
hospital on Wednesday and thankfully my doctor let me stay until late that
evening. By that night they had gotten her oxygen levels down to 34% and
because she was such a squirmy little thing and had pulled out her central
umbilical line, I got to hold her. I was so grateful that we got to stay
and that I actually got to be there for that experience. It was so sweet
to hold this little angel girl, wires and all. They said then that if she
continued to go down on oxygen she would be able to start nippling the bottle
and they would pull her gastric line. We stayed until her 11 feeding, I
pumped one last time at the hospital and we left around midnight. It was
so hard leaving her there. I didn't break down and actually cry until I
went back to our bedroom and saw her bassinet and sweet baby things all there
ready and waiting for her.
By the time I returned for the 5:00
am feeding she was down to 27% oxygen and seemed to be doing well. Her
pressures and heart rate were more stable and in a "pretty rhythm" as
the nurse said. They tried giving her the bottle at 2 and she did quite
well. Daddy actually got to be there to watch and then held her for the
first time. They both fell asleep for a bit with daddy holding her in the
chair. The nurse said that if her O2 sats continued to drop I could give
her the bottle at 5:00. Sure enough they did and I got to feed her at
5:00. Definitely a learning experience for the both of us. Because
of her low muscle tone, her chin needs to be supported so that she can form a proper
suck. We figured it out and she packed away 25cc. Not a whole lot,
but we were all pleased. Once again our squirmy little girl had done her
thing and blown her IV line. After 20 minutes of trying place a new line,
mama had to leave. We found out that night at the 11 feeding that they
had tried 4 places and then finally got one in her foot. Her blood work
came back showing her billi levels were high and they started her on photo
therapy lights for jaundice. The good news was that if she continued to
progress on her oxygen levels, continued eating at least 30cc's and weaned the
flow of oxygen to 1.5 lpm that they would be able to pull the IV and the nasal
canula for the O2. So we left the hospital again at midnight exhausted
but hopeful that the morning would bring good news.
Sure enough today was a great day.
She continued to eat through the night and got the last of her
antibiotics through her IV. Her morning blood work up was good so they
pulled the IV at 5:30 a.m. At 9 a.m. they were able to wean her
completely off the oxygen. By 10:45 she had maintained a good O2 sat
level and she was being graduated to the B nursery! Yeah!!!! She
was still under photo therapy lights but everything else looked good. I
got to give her her 11 am bottle and the doctor said that if her saturation
levels stayed good we could try the breast once that day. Luckily, things
worked out and I was able to get back for the 2:00 feeding. She was awake
and rooting so the nurse suggested we try this feeding at the breast and not
wait for 5:00. She did great. She was able to latch and lasted
about 15 minutes. It is more work for her at the breast and she tires
easily but the makings for success are there. We finished by
supplementing with the bottle and pumped the rest. It was so great to get
to feed her for the first time and sneak my first kiss on the top of her head.
I left the hospital thrilled and went home to get the other kids.
When I asked them earlier that morning what they wanted to do for fun
they all said that they wanted to go see Chloe. I picked up the kids and
turned right around to go back to the hospital. The kids are only allowed
in one at a time. It is very sweet to see them standing at the door after
they have scrubbed down with their hands in the air like mini surgeons waiting
for their turn to see their baby. It was very sweet. Spencer was
able to make it over there for her 5:00 p.m. feeding and she took a whopping
55cc's. Good job Daddy.
The doctor said that if she continues
eating, her bilirubin levels continue to go down and she maintains temp and O2
saturation levels she may get to go home on Sunday. We are so excited.
We set a goal in our minds for the 4th. But it is looking like
Chloe's independence day may come a little sooner. We will know more when
we go back for the 11p.m. feeding.
Thank you all so much for the
prayers, thoughts, texts, and calls. I'm sorry I haven't been able to
return them. Phones are not allowed in the NICU and I feel like I am
either there, pumping, or dealing with kiddos at home. That coupled with
the fact that if I started talking and crying it would not stop. There
has been little time to process, but our hearts are full. Spencer put it
best when he likened our little girl to Rocky, those of you who know Spencer
know what an honor that is considered.
He said:
For every
"down" moment during this process, there has been a beautiful
miracle.
I told Melissa that
Chloe has reminded me of Rocky [doesn't everything?]. In the first movie,
Apollo Creed fought Rocky to a draw and therefore retained his title, but many
fans were upset because they believed that Rocky had won. Apollo wanted
to fight Rocky again to prove once and for all that Rocky was just lucky in the
first fight and that Apollo was the clear champion. Apollo's trainer,
Tony, kept resisting and tried to talk Apollo into fighting someone
else-----anyone else. Apollo finally said to Tony, "Don't you think
I can beat him?" Tony's response: "I saw that man take a
beating from you like I never saw a man take a beating before.
AND... HE... JUST... KEPT... COMING.... BACK."
Chloe is my little
"Rocky." For every beating she has taken since even in
Melissa's womb, Chloe... just... keeps... coming... back. She is a
little fighter, and yet already so full of love. I can't wait for you all
to meet her. She is very inspirational to me.
He is right. She is our
inspirational girl. Chloe's name means "growing or blooming".
Jane means "gift of God" She has taught so much already,
we are growing because of her. She is our gift. We are so lucky to
have her and can't wait to share her with you all.
Thank you for all of your love and
prayers. We still need them.
We will keep you posted and hope to
have her home soon.
Much love,
Melissa and Spencer
June 26th, 2012
Just left the NICU and have cautiously good
news. Met with cardiologist and she has a moderate sized hole between the lower
ventricles (vsd) that they will monitor and may/may not require surgery she
also has pda which has not closed but their is a non surgical procedure that
may work to close which will also be monitored. As the doc put it the She
dodged some
Serious bullets. He said the nicu doc last night is calm as ice and never gets rattled so for him to be stressed meant that she was on very rocky ground. They managed to keep her stable all night which is great. He said the hurtle now is that her heart is pretty "pissed" as he put it and is not contracting properly so blood is not flowing quite the way it should. That coupled with the blood that is oxygen rich is mixing with oxygen poor blood and being sent to the body thanks to the pda. That puts added pressure on the lungs and so her blood pressure and oxygen sats are not where they would like them. But it is all manageable with time, oxygen and meds so we are just continuing to pray. Hopefully the kids will get to meet her today. They will not give us any kind of timeline but she will not be there forever. We can only hold her foot for now but its comforting to at least be near her. Thank you for your continued prayers and love. We will keep you posted. Love, melissa
Serious bullets. He said the nicu doc last night is calm as ice and never gets rattled so for him to be stressed meant that she was on very rocky ground. They managed to keep her stable all night which is great. He said the hurtle now is that her heart is pretty "pissed" as he put it and is not contracting properly so blood is not flowing quite the way it should. That coupled with the blood that is oxygen rich is mixing with oxygen poor blood and being sent to the body thanks to the pda. That puts added pressure on the lungs and so her blood pressure and oxygen sats are not where they would like them. But it is all manageable with time, oxygen and meds so we are just continuing to pray. Hopefully the kids will get to meet her today. They will not give us any kind of timeline but she will not be there forever. We can only hold her foot for now but its comforting to at least be near her. Thank you for your continued prayers and love. We will keep you posted. Love, melissa
March 21st, 2012
Hello Dear Family and Friends,
I'm sorry that I have been neglectful in getting a letter out to
you all. I have tried several times to sit down and put my feelings and
thoughts into words. Tomorrow is March 21st, or 3/21. Three Twenty
One. It has been declared by the united nations, World Down Syndrome Day,
to reflect the three copies of the twenty-first chromosome. What
better time to share some news.
There is so much that I need to share. I have sat down
several times to send an update as to baby girl's heart status. Each time
I have struggled to put into words what a miraculous experience it has been.
Each time I begin to type there is just so much to share. There is
much that I want to share but I don't have to seem to have the words to convey
the sweet sacred experiences we have had. I don't want to trivialize what
has truly been a gift of God.
We have had two appointments with Dr. Devore, the
perinatologist. At the first appointment he came in and started doing the
scan. He spent a good amount of time looking at the heart. He then
asked his tech to pull up the previous two scans. Dr. Devore then left
the room to go to his office and look at the earlier scans. When he
returned, he asked if we believed in miracles. He proceeded to tell us
that in the earlier scan the heart was floppy and erratic and the chambers had
gaping holes. He said that "endocardial cushion, or av canal defect,
was definitely present. He said that the heart that he was saying this
day was beating in perfect rhythm. He said that he could only find the
smallest hole and he could only see it at one particular angle. He said
that if you were to show him the two ultrasounds side by side he would tell you
that they were two different people. He said you have to understand that
before we were talking reconstructive heart surgery, the possibility of
pulmonary hypertension, and a bleak outlook. We were all teary and Dr.
Devore then told his tech that he had to share with her that "this couple
was LDS and that they believed in fasting and prayer. He said they went
to the temple and asked that their family do the same. He said now this
heart is totally different." It really has been amazing.
Every time I would start to talk about it I would cry. I
couldn't quite share the story without making it sound less than the miracle it
is. At the last appointment, he searched and searched. He couldn't
find the remaining hole. He said that we could follow up with a fetal
cardiologist, but he couldn't see a hole.
The far reaching affects of this miracle are huge! I can't
begin to express the vast reaching affect this miracle has had and will have on
this sweet little girl. She will not have to endure the pain of surgery,
my other children will not have the burden of that stress and worry for their
sibling, my sweet husband will not have the stress, worry as well as additional
financial burden. It is truly huge. It also means great things for
her. When children with DS have heart issues they tend to lag even
farther behind. When the heart is healthy they get the needed oxygen to
their muscles to improve muscles tone, leads to earlier gross motor skills,
which then affects their cognitive development, their world opens, everything
tends to work better, and they have greater health. The blessings of this
miracle are so far reaching. We are truly grateful. They are going
to continue to track her growth and development and we will keep you posted.
The day after we found out about our sweet little one on the
way, I was in the temple. The peace was so great, but the impression I
felt so strongly was the power and importance of the collective faith. We
thank you for your collective faith and prayers. We feel blessed beyond
measure. The Lord has not left us alone but at the same time it has not
been easy. A dear friend sent me a link to a you tube video about World
Down Syndrome Day. Take a moment to watch it and see a little of what
lies ahead for us. Thank you for sharing this journey with us. We
know we would not be in this good of a place without your faith and support.
Thank you for being in our hearts and supporting us on this journey.
All our love,
Spencer and Melissa
January 14th, 2011
Hi Our Dear Family!
Noah and Campbell often walk around the house singing a song that they
learned at our Christian Mommy and Me class. The chorus goes, "God is
Good." It's funny but as I recall the events of the day that song keeps
coming to mind!
Yesterday was quite the day. It seems we've been having a few of those
lately. We had our appointment scheduled with the perinatologist for
4:30. I had been having a rough day with quite a bit of cramping and
just feeling bad. About 2:00ish I started spotting - not a ton but
enough bright red to be nervous. Through tears I said prayers, called
Spence and spent the next couple of hours laying on my left side as much
as possible. I was grateful that we had our appointment already
scheduled. I think Heavenly Father is just trying to test my resolve
and prove (more to us) that we really do want this baby. By the time we
got there it had pretty much stopped.
Dr. Devore came in and got right down to business. Unfortunately our
little one was not cooperating. Dr. Devore could not get a good picture
of how things looked. The one thing that he was able to tell is that
the cord is off the baby's neck! Faith works! I got teary and felt the power
of this miracle in our lives. He then said that he will continue
to track the growth of the baby and see us in three weeks. Hopefully
then we will be able to get more details on the state of the baby's
heart. We are going to keep praying that the heart develops the best it
can and ask you to do the same.
There is much to be grateful for at this stage of the game. Spencer and
I were talking about the effect this little one has had on our lives and
hearts in this short time. It is amazing to me the blessings that are
there to be received if we are just willing to open our hearts. We had a
very sweet family night on Monday where we read a couple of stories
about what it is like to have a sibling/friend with Down Syndrome. There were
a lot of questions and answers at the end of the book. I think it really
helped the kids to start to wrap their brain around this. We also
talked about how 50% of kids with downs have hearing issues and that may be one
thing that our baby will face. These kids tend to struggle with language
development also because of low muscle tone and small mouth structure.
We talked about one thing that we can do to help our baby is to learn
some signs to help with the baby. A few years ago I heard about "Signing
Time Videos" They are geared toward kids and teach them basic signs. I
ordered a few and we watched one that night. The kids seemed very
excited. I think they liked having something they could actually do.
As a side note at Mommy and Me Thursday Noah signed to me "eat more
cracker" Three separate signs. He had been trying to tell me he wanted more
crackers for snack but he was across the table. It was very sweet.
This baby is opening all kinds of doors. :)
Spencer and I were talking after church last Sunday. He said, "the
whole reason we are sent to this earth is to be "proven here with" He said
how wonderful will it be to have someone in our home who did not need to be
proven. What a gift that will be if we choose to focus on those good things.
I know there are many more challenges to meet. The more I read the more
I realize we just don't know what lies ahead. There will be challenges
and we're just going to keep the faith. I do know that he is mindful of
us. I know that He answers prayers of faith! I know He has blessings
to give. I hope we will be ready to receive them. The scripture that
comes to mind is this, "Whosoever shall receive this child in my name
receiveth me: and whosoever shall receive me receiveth him that sent me: for he
that is least among you all, the same shall be great" I know we were
meant to receive "this child" I am grateful for the chance to receive
Him in the process. I am grateful to each of you for being willing to
love and receive this child as well.
"God is Good" This I know. We love you all and appreciate you sharing
this journey and your faith to help our little one. We will keep you
posted as things develop. In the meantime, thank you for your love,
thoughts, words of encouragement and faith. We need them all.
Love,
Spencer and Melissa
January 7th, 2011
Dear Family,
We wanted to thank you all for your prayers and concern on behalf of us,
our family and our little one. Thank you soo very much to those of you
who contacted us in one way or another. We so appreciate your love and
support. I apologize if I didn't get back to you, we've been a bit
preoccupied to say the least.
We received the results of the blood test a couple of days ago and it
confirms what we felt would be the case, our sweet little one does have
down syndrome. Dr. Devore said that he felt with the 98.6% accuracy
rate of the blood test coupled with the findings of the Ultra sound that
an amnio would not be necessary. Spencer and I were not surprised by the
news. Spencer had said before the fast that he was still praying for
the "home run" but that he promised Heavenly Father that he would love and
protect this little one however this spirit came to us.
We go to my regular OB on Monday where we will at least be able to check
if the baby still has a heart beat. We then meet with Dr. Devore (the
perinatologist) on the 13th. [Just realized it's Friday the 13th - good
thing we have more faith than superstition :) ] He asked that we
reschedule our appointment that we had scheduled earlier in the
afternoon for his last appointment that day so that he could spend more time
with us going over options and double checking the baby's heart. We are still
praying that the cord is no longer around the baby's neck and that the
heart is beginning to close as it should. We will let you know after
our visit on Friday.
This truly has been an interesting experience to say the least. I
definitely have moments where my heart feels heavy and I feel
overwhelmed. But with incredible speed the spirit softens my tears and
reminds me that this is all His plan.
As we struggled with the decision to have another child and then
struggled to conceive a quote by Elder Maxwell gave me great strength.
It says, "Faith in God includes faith in his timing." I have the magnet
on my fridge and referred to it often for comfort and strength. In the
last 48 hours I have spent lots of time searching for information and
insight. There was a quote I came upon by a woman who has a daughter
with downs. In it she too was struggling with the timing of their child.
(at the time she didn't know the child had downs) She said that she had
hoped the baby would be delivered at a different time of year, that
would facilitate bringing a new child into their life. She said that she got
the distinct impression that had they waited she would not have had
"this child" As I read that, it hit me. We tried. We did all we could.
But Heavenly Father wanted us to have "this child." This child in His
timing. Another thought that resonated with me was from a woman who did not know
until delivery that their child had downs. She said that so many people
told her how lucky she was that she didn't know. At first she felt like
she would have liked the chance to prepare. Then she said that she felt
like it actually was a blessing as they spent their time preparing for
their child. For this new sweet spirit to join their home. Preparing
for their daughter not a "syndrome." I realized that although I am
grateful for the chance to be ready and have all my "ducks in a row", as
my mother in law would say, I don't want to spend all my time thinking
of a problem. I choose not to spend the next 6 months mourning the loss of
what might have been. I want to spend the time focused on the blessings
that this new path will bring. I know there will be challenges to meet.
But I know that I do have Faith in the Lord's plan. I know that this
child will be just that, a child ~ full of love, joy and innocence. I
am so grateful for that gift.
I've decided that the quote I will focus on now will be Elder
Wirthlin's, "Come what may and love it!" It is our life. We have been richly
blessed. I know that we will have a life that we love. I love this
child. Not the one I thought would be, but this one. I look forward to
seeing just exactly how that blessing comes and just who he/she is.
We still have a ways to go. There will be highs and lows. We still
need your prayers and faith. First for the cord to become untangled and
second for our little one's heart to develop the best it can. We will
take one day at a time, be thankful for the blessings we enjoy and
grateful to be carried by the peace of the spirit. Thank you again for
your continued friendship, love, faith and support.
Love,
Spencer and Melissa
December 24th, 2011
Hi Family,
I have decided to ask all of you for your help right now. There is a
lot going on now and some of you know a little but I wanted to fill you all
in on what was going on with us right now.
The good news that we had planned to tell everyone around christmas is
that after much fasting and prayer we are pregnant and expecting a
little one in early July. Dad was giving us a hard time about another baby. I
said maybe we'd give him one for his birthday. Turns out baby is due
right before that on the 12th. The bad news is that we are almost 12
weeks pregnant and just went through some early prenatal testing.
The first of the tests was performed Wednesday afternoon. The
perinatologist we met with after measuring the fluid at the back of the
baby's neck and coupling that result with my blood work gave us a 1:7
chance that baby will have Downs Syndrome. After talking with a friend
who had seen a perinatologist in our stake who is top in the nation for
detecting chromosomal problems through ultrasound I called Dr. Devore's
office. When I explained the history to the receptionist she said that
this was something that Dr. Devore would want to speak with me about.
She gave me a direct number to contact him. When I told him the details
he said that he would be in his Pasadena office at 2:30 and to call the
receptionist and tell her to put us in and he would meet us there.
So with a little trepidation we went. He did a high sensitivity 4d
ultrasound for a good 45 min/ hour. He spent a lot of time focused on
the baby's heart and spine area. One measurement he was specifically
looking for is called the nuchal translucency. It measures the amount
of fluid at the back of the baby's neck. Kids with chromosomal issues tend
to have lymph issues as well and so will often retain fluid. Typically
an ultra sound of a 12 week fetus looks akin to a lima bean. The c
shape of the spine is what one would normally see. Typically the black space
indicating fluid would be about 1/4 to 1/2 cm thick. Our little one had
3.4 cm of fluid. A strong marker for downs. In and of itself not a
definite but it tips the scale significantly that direction. More
problematic was the fact that rather than a smooth curved c shape our
little one's curve looked more like a v or the way a kid would draw a
flying bird. It curved from the head down to a sharp point at the neck
and then back up and around to the rump. This was because the cord is
wrapped tightly around the baby's neck. He repeated a number of times
that the cord was tightly wrapped around the neck. He said that we may
not have a baby in 2-3 weeks. Spencer got the impression he was saying
that these other issues may be mute because of that.
After going back to show us a couple of other pictures on the ultrasound
we met in his office to discuss what he felt was going on. He proceeded
to tell us that the baby had markers for downs (neck, nasal bone, heart
and vein). That coupled with my earlier blood work there is a strong
50/50 chance that baby has downs. There is a new blood test that has
only been FDA approved for the last two weeks and he has only offered it
in his office for 5 days. There is a small amount of fetal material
that crosses the placenta and enters the mothers blood stream. They are able
to isolate the fetal material and run genetic testing to determine if
trisomy 21 (downs) trisomy 18 and trisomy 13 are present. Trisomy 21 is
detectable to a 99.9% accuracy. We did that test and should have those
results back in 7-10 days.
The second main concern is that there is a hole in the baby's heart
between the 3rd and 4th ventricle. Heart issues are also a marker for
downs as 50% of kids born with downs have heart issues. The one
positive here is that he did say that we don't typically look this
closely at the heart at 12 weeks. He said we usually look at the heart
at 18 weeks and it may be able to heal.
The third main, and most immediate issue is that the dent caused by the
cord being wrapped so tightly around the baby's neck. It is possible
that the cord will continue to tighten become pinched and the baby will
die. If the cord stays around the baby's neck then there are other
complications that will be added, lack of oxygen to brain, lack of
nutrients, intrauterine growth retardation all of which would be added
to an already struggling downs baby. We asked if there was a procedure
that could be done to remove it. He said there was nothing we could do.
He then said there is something that I can't tell most of my patients.
There is fasting and prayer.
Dr. Devore was so fabulous with us and we felt so blessed to havesomeone who shares our beliefs to be telling us this heavy horrible news.
Spencer and I both felt a sense of calm and peace throughout this whole
experience. We are truly being carried by the spirit. For that I am
deeply grateful. Dr. Devore shared a story of a friend who was an OB in
Utah with him. The friend's first born son had CP due to complications
at birth. The second son was born with Downs. His friend went off the
deep end. It was more than he could handle. Years later he met up with
him and when he asked about his son, the friend replied, "that child was
sent to me so that I would make it to the celestial kingdom." All three
of us were teary at that point.
I spent the morning yesterday in the temple. There was an incredibly
comforting and sweet spirit. I know that Heavenly Father is mindful and
with us on this journey. I know things will work out the way He
intends.
I don't know what that means exactly. But I know we were supposed to
go down this path. I know that there are lessons to be learned. I just
hope I learn them quickly and well so that I don't have to do this
again!:) A couple of impressions that I had while in the temple is that this
journey is about coming to the Son. In an interesting way this has made
christmas that much sweeter. Another impression that came to mind was
the power of the "collective faith" As those names were put on that alter
my heart went out to them. There is strength in numbers. There are
blessings and miracles waiting to be given but some require action on
our part ~ sacrifice through fasting and prayer. That's where we need you
all. The other thought that came to mind was that thanks to technology
we now have the ability to be specific in our prayers. To ask that the
cord become untangled and allow the baby grow the best it can in the
manner the Lord wants. I know the Lord's will will be done. I don't
know what that is exactly. But I pray that I will be faithful and able
to accept and grow from this challenge however it unfolds. We are
going to fast on the 1st as a family and ask that you join us if possible. I
know there is power in the collective faith we share.
Thanks for loving and supporting us. We appreciate you. Enjoy
Christmas. This is why we are here. To come to the manger, find the
Son and learn to love as He does. We are so blessed to have that knowledge.
Love you and thanks for supporting us however you feel you can.
Love,
Melissa and Spencer
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