Sunday, June 6, 6:30 AM
(approximately seven hours after Kate’s birth)
Email to Bishop David Garlick
I wanted to fill you in a little
bit. We've had a very hard night. The baby's birth has been nothing like our
other three. It would be hard to go into all the details now, but when we have
time to visit I can share more. The first obvious sign of problems was that the
baby was very small when she was born. Holly carried her for 39 weeks, but she
weighed only 4 lbs 6 oz, which is obviously a huge contrast with our other
three kids who were all over 8 lbs. Everyone in the room seemed worried and
rushed when the baby was born. We hardly even got a photograph before they
rushed her away to the NICU. The cord was short, so there's a possibility that
her small size is simply due to malnourishment in the womb. But there is also a
chance that she has some type of genetic abnormality, which obviously frightens
Holly and me a lot. Let's just say we didn't sleep much last night. We got to
go see her in the NICU for about an hour at 2:00 in the morning, and she is so
small and precious. Holly hasn't been able to nurse her or anything yet. So it
will probably be hard for a few days while things get sorted out. We certainly
need all of your faith and prayers. I am not sure what to do with our kids. Do
you think our kids could go to church with your family? I guess you could tell
the ward we had a baby girl and Holly is fine and the baby is ??? sort of fine,
but I'm not sure the best way to say that. I'll leave it up to you.
Sunday, June 6, 9:50 AM
Email to friend Don Adamson
I've been thinking a lot about
you and your family the last 12 hours. Holly delivered our baby girl last
night--one week early. She carried the baby 39 weeks, but the baby weighed only
4 lbs 6 oz. The doctors had never picked up on her being so small in any of the
ultrasounds, so it was a huge shock and surprise to us. The neonatologist came
to see us last night and said she is almost positive it's not Down syndrome,
but it is almost certainly some other type of genetic disorder that could
potentially be very serious. We have felt really frightened about the
possibilities, but we know things are in the Lord's hands and it won't do any
good to worry until we find out exactly what's wrong. It's been really hard
hearing people at the hospital say they are sorry about our baby or feel bad
about her. They are just trying to be nice, but you never want to be the one
family on the floor that has the baby everyone feels sorry about. We never thought
it would be us, but here we are. I gave her a blessing in the NICU last night
and we feel at peace that our family will be fine and we will be blessed to
have her in our home. I'll probably call you later this week once we have more
information.
Tuesday, June 8, 11:27 AM
Email to family and friends
We're now here at the NICU at
Texas Children's Hospital in Houston. We are not allowed to use cell phones in
the NICU, so using this email address is going to be the best way to keep in
touch. They have not operated on Kate
yet, and we are finding out that the operation will probably be delayed until
later this week or even next week. Besides the aortic coarctation that they
know she needs surgery for, Dr. Ayers told us she can see a few other things
with her heart that are a little concerning. Kate is very stable right now,
breathing on her own without oxygen. We obviously have full faith in the team
of doctors here and appreciate how considerate they are of us and our concerns.
We will meet again later this afternoon with her cardiologist after they've had
a chance to review all the images of her heart. The hope is that by the end of
the day, they'll at least know about when the surgery will likely take place. We
will send updates as we find out more information each day. We appreciate the
prayers and support on Kate’s behalf and ours.
Wednesday, June 9, 4:33 PM
Email to family and friends
Two different geneticists met
with us yesterday, and both examined Kate to try to figure out what's
happening. One of them drew a visual family tree of both of our families that
would have impressed any ward family history consultant. We should have asked
to get a copy for posterity! Although they won't know until the results start
coming back tomorrow, they are still leaning toward Turner syndrome. They have
noted, however, that Kate has some symptoms that are not usually characteristic
of Turner's; and she is also missing a few of the typical Turner's symptoms. So
it could be anything.
Thursday, June 10, 10:10 PM
Email to family and friends
Today has been very tough. We
knew it would not be good news when the neonatologist told us this afternoon
that we needed to sit down before hearing what the chromosome tests had found.
As it turns out, Kate does not have Turner syndrome. Instead, she has a much
more serious condition called Trisomy 18. We met first with the neonatologists,
followed by a meeting with all of Kate's doctors: the geneticists, the
cardiologist, and the neonatologists. We were very blessed that Bishop
Haymond, the endocrinologist with whom we've been staying, was able to race
over to the NICU in time to actually attend the meeting of all the doctors with
us. It was so nice to have him there to hear everything and help us process
things after the other doctors left. We had the opportunity during that meeting
to ask all our questions about Kate and her condition.
Trisomy 18 has a much different
prognosis than Turner syndrome. Nearly all infants born with Trisomy 18 die
within one to six months. The list of complications is enormous. As a result,
the surgery Kate needed for her heart is now not an option. Because Kate has
her heart defect, the doctors believe it is likely that once they take her off the medicine that is keeping her heart working, she could pass away within days
or weeks or maybe months. We are praying for comfort and direction from heaven,
and we are so grateful to know that no matter what happens, Kate is ours
forever. She is our little angel.
Friday, June 11, 7:45 PM
Email to family and friends
Today was a beautiful day for our
family. We began early this morning, when we gathered to give Kate a name and a
blessing here in the NICU at Texas Children's. It was a wonderful experience,
and we felt the presence of angels--the one in our arms and others who were
watching.
Later, my mom brought Kennedy,
Jackson, and London here to the hospital for some much needed family time. At
first we brought them to Kate's room and let them each enjoy holding her. They
also wrote cards and drew pictures for her. The hospital even let us wheel Kate
outside into the courtyard so the kids could enjoy being with her in that
setting. After bringing Kate back inside, Holly and I met privately with the
kids in Kate's room to explain to them that Kate's heart couldn't be fixed and
that she probably won't be with us very long before she is called home. Kennedy
was so sweet and cried hard, wanting to know why Kate couldn't stay with us on
earth. Through everyone's tears, we could testify that Kate's heart would one
day be perfect and whole. Sweet Kennedy worried that Kate might come back again
as a baby in someone else's family, but we assured her that Kate would always
be ours. While we have never known such heart ache as what we have felt this
week knowing our own child cannot be healed and will leave us sooner than we
would ever want, there is also unspeakable joy knowing she will be taken home
to our Father in Heaven, and we will see her again one day.
Sunday, June 13, 11:26 PM
Email to family and friends
As we mentioned last night,
tonight is the final night we will spend in Texas Children's Hospital with
Kate. It's also the last time we'll send a regular update like this. Starting
tomorrow, we will take Kate home and love and enjoy every day we have her with us. When we take her home tomorrow, she will keep her feeding tube but
nothing else will be hooked up to her. The uncertainty surrounding how things
will go once we get home is hard to think about, but we know that events will
unfold in a way that is according to the Lord's plan for her and for our
family.
As anxious as we are to get home,
we will miss being around the doctors and nurses who have watched over and
cared for Kate (and us). This morning when we got to the hospital, a nurse who
was assigned to Kate several nights ago stopped by to tell us she had come to
our room last night and held and sang to Kate for several hours, just because
she wanted to help. That's what everyone here has been like. They regularly
tell us that they are praying for Kate, and many of them tell us Kate is one of
the sweetest, most peaceful babies they've worked with. We have spoken of Kate
as our angel all week, but we also feel like the medical people at TCH have
been angels to our family too. Elder Holland taught: "When we speak of
those who are instruments in the hand of God, we are reminded that not all
angels are from the other side of the veil. Some of them we walk with and talk
with—here, now, every day. Some of them reside in our own neighborhoods...Indeed
heaven never seems closer than when we see the love of God manifested in the
kindness and devotion of people so good and so pure that angelic is the only word that comes to mind." We won't forget
the doctors and nurses who were our angels this week.
The Haymonds were also
ministering angels to us. To think that when we first made contact with them
(through a friend) by phone on Monday, they had never met us or spoken to us;
yet by the time the night was over, they had given us a key to their house and
opened their hearts to us, too. We have thought of Matthew 25:35-36. "For
I was an hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I
was a stranger, and ye took me in: Naked, and ye clothed me: I was sick, and ye
visited me: I was in prison, and ye came unto me." We thank them for
taking us in. We also thank our friends, the Prices, for spending time with us
almost every day we've been here.
Thanks to all of you for
ministering to us, too. Each note, text, or email we have received from you this
past week becomes part of our book of remembrance to help us never forget what
this wonderful week has been like. Finally, Holly has been a much needed angel
to Kate and me all week. Some of the people here have assumed it is Holly's
medical background that has made her so strong and able to deal with the
challenges of this week with such grace. But I know it is much deeper than
that, and for that I am very, very grateful.
Monday, June 28, 11:56 AM
Blog post by Holly
Kate turned 3 weeks old on Saturday! She is such a joy and we love her so much. She is taking almost 2 ounces every three hours (a little by bottle and the rest by her feeding tube), and she lets us know almost to the minute when it's time for another feeding. Her cry is very soft, but also heart breaking. Fortunately she doesn't cry very often (only when she's hungry, needs a diaper change, or is gassy—the nurse is bringing some drops for that today and I hope they help). She sleeps pretty well, but we get up with her every three hours to feed her whether she's awake or not. Kate has gained 12 ounces and grown 1 inch since we've been home. Wow! She is now 4 lbs. 13 oz. and 17.5 inches. To celebrate 3 weeks, Kate had her first outing to one of our favorite yogurt places, Spoons. My parents were in town visiting and enjoyed the trip with us as well. Jackson and Kennedy have a new bedtime routine of holding Kate as we read a book and say prayers. It has turned into a favorite time of day.
Tuesday, July 6, 12:21 PM
Kate turned 3 weeks old on Saturday! She is such a joy and we love her so much. She is taking almost 2 ounces every three hours (a little by bottle and the rest by her feeding tube), and she lets us know almost to the minute when it's time for another feeding. Her cry is very soft, but also heart breaking. Fortunately she doesn't cry very often (only when she's hungry, needs a diaper change, or is gassy—the nurse is bringing some drops for that today and I hope they help). She sleeps pretty well, but we get up with her every three hours to feed her whether she's awake or not. Kate has gained 12 ounces and grown 1 inch since we've been home. Wow! She is now 4 lbs. 13 oz. and 17.5 inches. To celebrate 3 weeks, Kate had her first outing to one of our favorite yogurt places, Spoons. My parents were in town visiting and enjoyed the trip with us as well. Jackson and Kennedy have a new bedtime routine of holding Kate as we read a book and say prayers. It has turned into a favorite time of day.
Tuesday, July 6, 12:21 PM
Email to family and friends
This morning, Kate passed away
peacefully around 8:35 AM while in our arms, one month and a day after she was
born. We brought Kate home from the
hospital three weeks ago, and we could not have asked for a more wonderful
three weeks with her. She was sweet and
peaceful and endearing the whole time she was with us. After a very difficult night on Sunday, the
doctor visited us on Monday morning and told us that Kate was transitioning and that her blood
circulation was beginning to show signs of slowing. He prescribed some pain medication, and Kate
spent the last day of her life looking and feeling very peaceful, while awake
and alert much of the time. Our bishop
and I gave Kate a blessing last night, and as we hoped, she was very peaceful
throughout the night until her sweet release this morning. Our kids had a chance to come into our
bedroom and say goodbye to Kate this morning; and we had a tender family prayer
together. We are so grateful for the
brief time that Kate was with us, for the impact she has had on all of us, and
for the memories of her that will bless our family forever.
Epilogue
Kate’s funeral was beautiful; the outpouring of love and support from family and friends was incredible.
Wanting to keep Kate’s memory alive, we planted a garden in our backyard with
several flowering trees to remind us of Kate. We also donated a bookshelf to
our children’s elementary school library, and asked family and friends to
donate children’s books for it in Kate’s memory. Books came from all across the country, and the bookshelf
remains a popular location in the school library today. Holly delivered a baby
boy in January 2012, whom we named Austin in memory of his older sister, Kate
Austyn. Since Kate’s passing, we have visited her grave weekly as a family, to spend a few moments remembering her and honoring her memory.
