Lily Jane Church is my beautiful daughter. At 20 weeks gestation she was diagnosed with a condition that was "incompatible with life," a condition called
Alobar Holoprosencephaly. Her brain looked more
like a rubber ball than the dipped and curved, segmented mass it was
meant to be. It would make her ability to do simple things, things we all take for granted, very difficult. We were told not to expect her
to live very long. That she might not even make it to birth alive.
We were stunned. Devastated. The rest of the pregnancy was emotionally
turbulent, as one would expect. How do you plan for the little life inside of you to end? But when she was born she lit up our lives. She was such a beautiful thing! And she
changed our lives forever.
If there was one thing our daughter taught us, it was to be
courageous. To lean on the Lord and on those around you. Her life wasn't long but it had enormous impact. And now we have the blessing of that
sweet little girl deep inside of us. Always.
02.27.2009
“Baby Sissa”
It’s official. We had the ultrasound this morning and it’s a girl!
Brady calls her “baby sissa” or “baby chocolate” (the name he picked
out for her a few months ago). She’s growing right on schedule and was
nice enough to pose for a few pictures. We think she’s pretty
photogenic.
This time around they also had this cool 4D imaging they can do
which gave us an even better look at the baby. She looks skinny, but
she’ll be pudging out during the next 20 weeks of pregnancy. Especially
with how much I’ve been eating lately.
03.04.2009
How Quickly Things Can ChangeI had another doctor’s appointment on Monday and it turns out that
our daughter is not as healthy as we originally thought. I was sent to
a specialist on Tuesday where they did another ultrasound and showed us
what was wrong. It seems that her brain only began to split into 2
lobes - it’s partially cleaved at the frontal lobe, but the rest
remains one big piece and it’s well past the point in development to
expect it to finish. This, along with a few other indications, lead our
physician to the conclusion that our daughter has Trisomy 13, a rare
chromosomal dysfunction. It only occurs in 1 of every 10,000 births and
is just a random phenomenon. Although the pregnancy will continue as
normal for the remaining 4 1/2 months, she won’t be able to survive
outside of the womb for very long. We’ll only have her for a few days
or maybe a few months once she’s born.
We’re still trying to
digest all of this. It’s a little overwhelming to say the least. But
we’re determined to enjoy her while we have her. And we know that we’ll
be reunited with her again when our time on earth is through. Until
then, we will miss her.
Thanks to those who have offered your
prayers for us, and we apologize that we were not able to call and tell
everyone in person. Just know that if you have any questions for us you
are more than welcome to call. We are doing well and have so much to be
thankful for during this time.
03.22.2009
And we’re so glad! About 3 weeks ago, when we had our initial meeting
with the maternal fetal medicine specialist, we opted to have a
procedure done called amniocentesis - they drew an amount of amniotic
fluid out of my belly with a very long needle that I did not see
because my eyes were closed the entire time. It really wasn’t that bad,
though. Easier than having blood drawn.
It
takes a few weeks for the fluid to culture after which they stain it,
put it under a magnifying glass and examine the chromosomes. This past
week we received the final results of the test - our baby girl’s
chromosomes are normal! In other words, she doesn’t have Trisomy 13
like the doctor originally said! We were cautiously ecstatic. Of
course, she still had something wrong but the elimination of this
diagnosis left so much more room for hope!
On Friday we had a
follow-up ultrasound to look at her again. She’s still small - in the
25th percentile - but she’s growing and looks fatter and cuter now than
last time. They examined her hands and her right eye (the two other
“symptoms” they were concerned about before) and both now appear to be
perfectly normal and functioning as they should. The biggest concern,
her brain, is still a big concern. It simply didn’t form the way it
should have. But on closer examination it appears that the center of
her brain, which is responsible for life-sustenance (breathing, heart
beat, etc.) is fully formed - just like a healthy baby’s would be. This
means that our baby’s chances of survival beyond birth are very good.
We just might get to keep her. Our fingers are crossed.
We have
a Fetal MRI scheduled for the beginning of April where they will be
able to get pictures of her brain. This will give us a better idea of
what has and hasn’t formed and what she will likely be able to do and
have trouble with. Thank you so much for everyone’s prayers thus far.
We’ve really felt blessed and know that the Lord is watching over us
and has our baby in his hands. Please continue to pray for her as the
road ahead of her will likely be a little rocky.
03.31.2009
Lily Grace
“If our baby girl’s time with us is going to be limited then she’d
better have a name right away.” That’s what I said to Craig when we
were originally told she probably had Trisomy 13. We came up with a
name the following week. Though her diagnosis has changed, the name has
stuck and we want everyone else to know it, too: Lily Grace.
We decided to choose a name based on it’s meaning.
Lily: after the flower often used as a reminder of the resurrection
Grace: kind of self-explanatory, but I like it defined as “unmerited favor”
So,
Lily it is. We’ve been calling her that for weeks now and it was
getting a little bit awkward to write posts about her without using her
name. Now that we’ve announced it, we can start using it on here, too.
04.08.2009
I had an MRI on Friday to get better pictures of Lily’s brain. I’ve
never had an MRI before. It’s an interesting experience and I must say
that I’m very glad I’m not clostrophobic. Even so, I’m not sure I’d
look forward to being slid into a white tube not much bigger in
diameter than me again anytime soon. Good things: MRI’s are extremely
loud (clicking, buzzing noises) so they give you earphones and tune it
to a radio station of your choice. They also put a bunch of blankets on
my belly to protect Lily’s ears and a plastic thing - it looked like
something a catcher would wear to protect himself - on top. So whenever
Lily made even a tiny movement, I could feel it. Which I loved.
The
doctor was supposed to write up a report that evening and send it over
to our physician’s office. But our physician’s told us well before the
MRI that it would probably take 10 days to receive the results. So now
we wait. Something we’re getting used to these days. My next ultrasound
is April 13th, at which point we will also go over the MRI results.
We’ll post more then.
04.13.2009
Another UltrasoundToday we had another ultrasound and went over the MRI results. Lily
wasn’t a big fan of the ultrasound. She kept rolling over, showing her
back to whoever was trying to look at her. I don’t blame her. The poor
kid’s been poked more than her fair share already. But even though she
protested, they were able to get some good pictures of her. Here’s a
good one of her sweet little face.
Unfortunately, we don’t know much more now than we did before. It’s
getting to be a recurring theme that I guess I’m just supposed to get
used to. We won’t know anything definitive until she’s born and the
geneticists/neurosurgeons/whoever else can look at her in person.
Here’s what we do know:
1. She doesn’t have Trisomy 13
2. She doesn’t have Holoprosencephaly (the MRI showed clear division of her brain)
3. Her brain is small, all the way around
4. She’s small - she’s in the 25th percentile, consistently
5. There is extra fluid in her brain, causing compression
6. There’s extra fluid in the amniotic sack (causing me to be big but doing no real harm to her)
7. Everything else is developing normally
We’ll
continue to have monthly ultrasounds until she’s born to monitor her
progress. I really enjoy these, actually, because all I recognize on
the screen is an adorable baby who gets bigger and cuter every time we
look at her. We’ll also be meeting with a geneticist in about a month
to try to narrow down all the information we have and maybe nail down a
syndrome, if she has one. As the birth approaches there will be a
pediatric neurologist getting involved, too, who will continue to care
for Lily after she’s born.
The birth may come sooner than
originally expected. Because there’s extra fluid in the amniotic sack,
my uterus is stretched bigger than it normally would be. This tricks it
into thinking it’s further along in the pregnancy than it really is,
and could lead to an early labor. If it’s too early we’ll do our best
to keep her in. Until then, we wait some more and hope for the very
best.
04.20.2009
The New OB
A couple weeks ago, after much deliberation, I decided to switch
OBs. My original obstetrician was fine, his office staff was great, but
he just made me uncomfortable. His personality and mine didn’t mesh
well and I believe it’s important to be 100% confident in and at ease
with the person who is charged with catching your baby. My first
appointment with the new OB was today and so far, so good! His office
staff is equally as wonderful as my last and the doctor himself seems
to have a much more easy-going personality, which I greatly appreciate.
As
I am entering the 3rd trimester and there is an increased likelihood
that I’ll deliver Lily early, he brought up some questions about the
actual labor. Firstly, he offered to not have fetal heartbeat
monitoring during the labor. Secondly, he told us we could induce labor
early, if desired. Both of these options were presented to us on the
premise that our child will not live and that my comfort is of top
priority. Sometimes babies like Lily present with heartbeat
irregularities during labor that lead to an emergency c-section, only
to find that the baby wasn’t actually in distress or that the child
dies shortly thereafter anyway. Since having a baby vaginally after a
c-section is generally frowned upon they want me to avoid it - hence,
no heartbeat monitoring. Early induction would be an option if I wanted
to hurry up and get the pregnancy over with. Why continue with pain and
discomfort if she’s just going to die anyway, right?
I told that
doctor without missing a beat and in no uncertain terms that I intend
to carry Lily to full term. Terminate (in effect) my child so that I
can move on with my life? If that was something I was willing to
consider, I would have done it much earlier in my pregnancy. Lily will
be born when she decides it’s time and I will wait patiently, albeit
anxiously, until that day comes. The way I see it, the longer she’s in
there the better her chance for survival. As far as the heartbeat
monitoring, that is something we are thinking about but for very
different reasons than the ones the physician gave us. We’ll decide
where we want to go with that after some research and much prayer.
I
can’t explain to you what it feels like to have someone tell you that
your child probably won’t live; that if she does, her life may not be
one that is worth living. You’d think that after getting over the
initial shock of the first time it would get easier to hear but it
doesn’t. It’s like there’s a chunk of my heart that I’ve devoted to
this child and they’re trying to rip it out. The first time I thought
they’d taken it clean away, but somehow it regenerated. They continue
to tell me every few weeks that there’s a very real possibility my
child might die, wrapping their latex gloves around that small piece of
heart and trying to tug it away again. And it budges, and bleeds. But
it’s not moving any more. That piece of heart belongs to Lily and I
will not and cannot let it go.
I do not know what will happen to
my daughter; I don’t know what God’s plan is for her or for me. But I
know that he has one. I know that if we are doing everything we can to
follow his commandments he will help us. He has already worked so many
miracles for us. And, luckily, I’ve never read about a quota for
miracles. I believe that my daughter has the capacity to live and is
worth fighting for as much as any other child, born to any other
mother, in any other part of the world. She is not worth less because
her brain is small. I intend to fight for her as long as she lives.
05.31.2009
Lily UpdateSome of you have been wondering what’s going on with Lily since we
haven’t made any posts about her recently. Thank you for your concern
and thoughts for her! Unfortunately, we haven’t posted anything because
we really don’t have any news to share. It’s a waiting game now. Once
she’s born they’ll run a bunch more tests and hopefully give us a
diagnosis. Until then she’s growing and so am I :) She gets hiccups at
least twice a day. Her favorite position is cramming as much of her
body as she can on to my right side. And she’s been head-down for a few
weeks now. I have Braxton Hicks contractions quite frequently, but
there’s no indication that she’ll be born anytime soon. She seems to be
content to grow at the moment, which is fine by us!
If we do
happen to learn anything new we’ll be sure to post it. Ultrasounds will
continue (as often as weekly) for the rest of the pregnancy and we’ve
got a great medical team behind us. I’ll be delivering at the
University of Utah Hospital under the care of a brand new doctor (yes,
#3) because it’s attached to Primary Children’s Hospital. That way
we’ll have the best medical minds on hand and if Lily has to be
transferred to the Children’s Hospital we won’t be separated. Until
then we’re just trying to get everything ready for having 2 babies and
way too many diapers.
06.04.2009
34 Weeks and Counting
Today I had an appointment for an ultrasound and the standard clinic
visit. The ultrasound was first, followed by clinic which included a
discussion with our doctor on what they found in the ultrasound.
Unfortunately, Lily’s hydrocephalus is getting worse which is causing
her head to grow much faster than the rest of her body. Her body’s
sized at about 32 weeks, but her head is measuring 35.5 weeks. In
conjunction with that the amniotic fluid is also increasing - I have
about 35% more amniotic fluid than other women at my same stage of
pregnancy. They didn’t tell me why her hydrocephalus is getting worse
(I forgot to ask, but they probably don’t have a clear idea anyway) but
there is nothing we can do about it until she’s born. It does carry
some necessary complications for the birth, however.
If her head
keeps growing so much faster than the rest of her it may get to a point
where it’s too big to fit through the vaginal canal, making a vaginal
delivery impossible. At that point they would have to do a c-section,
cutting horizontally across my lower abdomen. But if the head gets
really big it’ll be too big for that even and they’ll have to do a
c-section cutting vertically up my abdomen. Considering I wanted to
have a natural, drug-free delivery I’m not very excited about any of
these options. But of course we do what’s best for Lily.
Here’s
the really tricky part: If her head keeps growing, with only a “guarded
prognosis” for Lily we have to decide what course of action we want to
take. Whether to induce labor early or do a c-section and, if a
c-section, what type? In other words, how long will we let her grow
inside of me before saying it’s time? The longer we wait the better for
her, but the more complications it makes for futures
pregnancies/labors/children. Fun place to be, huh?
I think I’d
rather be elsewhere. But this is it; this is our life, our pregnancy,
our baby girl. And somehow the pieces are all going to fall together.
It may not be as pretty a picture as we would have liked, but that’s
okay. If every piece was made in gold and yellow the end result
wouldn’t be nearly as beautiful as with the blacks and greys. Please
don’t stop praying for my baby.
06.13.2009
Lily Grace ChurchOh the stories we have to tell! My last doctor’s appointment was
this past Thursday, June 11th. It started out with a Non-Stress Test
(where they basically just listen to the baby’s heartbeat for 20+
minutes). During the test Lily’s heart rate dropped for about 3 minutes
so they sent me over to Labor and Delivery for further monitoring. I
spent the next 24 hours in the hospital with a monitor strapped to my
belly, but nothing significant happened so they sent me home Friday
morning. I was having some contractions, on and off, but wasn’t
dilating much at all so nobody really thought anything of it.
Later
that evening, at around 6:30p, I started having regular contractions
again. I’ve had so many contractions over the past month that just
start and then stop an hour or two later that I figured these would
probably have a similar end. Boy, was I in for a surprise. The
contractions stayed pretty steady for the next 4 hours or so, getting a
little bit stronger and closer together but nothing too bad. Then at
about 11p they started to almost pile up on top of one another and
before I knew it they weren’t even really stopping. The hospital is
usually a 25 minute drive from our house. I don’t know how fast we were
going or how many red lights Craig ran (cautiously) but we made it
there in record time. Which is a good thing because I had started
pushing in the car. If you’ve been in labor before, you understand the
uncontrollable urge. If you haven’t, let me tell you there was nothing
I could do to stop it. I was trying! But that child was coming out.
Luckily, my water hadn’t broken yet and I couldn’t feel her head which
gave me some comfort. Craig parked in front of the ER, grabbed a
wheelchair and RAN through the hospital to get me to Labor &
Delivery. As the elevator doors opened onto the L&D floor my water
broke. Keep in mind, I had extra amniotic fluid so there was A LOT of
water. Poor Craig was running behind me, screaming in the wheelchair,
sliding all over the place while trying to open doors. I’m sure that we
looked pretty hilarious. As we got to Labor & Delivery at least 6
nurses came running down the hall toward us. They got us into the
delivery room, stripped off my pants and barely got me on the bed, on
all fours, before she started to crown. I stayed in that position for
the duration of the labor - there was no way I was going on my back, I
had no desire to move any more than I absolutely had to. But the
duration of the labor was about 1 minute. I didn’t even feel like I was
pushing hardly and then out she came! So, ladies and gentlemen, we have
a new addition to our family. Please meet Miss Lily Grace Church.
Lily was fabulous! She was pink and gorgeous and breathed on her own
from the very beginning. She still hasn’t had any troubles at all. She
amazes us. She is in the NICU because of her brain abnormalities but
that’s more precautionary than anything. All the nurses say that if she
didn’t have anything wrong with her brain she’d be going home with us
in a few days. As it is, she’s scheduled for an MRI and a meeting with
a geneticist on Monday to help us figure out just what her brain really
looks like and what might be in store for her in the future. She’ll
probably be in the hospital for a few more weeks until they’re certain
she’ll be alright at home.
First, we want to say thank you to everyone who helped watch Brady
for us over the past few days. He has no idea what’s going on or even
that Lily’s not in my belly anymore (he’s too little to visit in the
NICU) but he has had a ball playing with everyone. It’s so nice to not
worry that he’s happy and well taken care of. Also, we want to thank
everyone who has been praying for Lily and for us. If it hadn’t been
for your prayers who knows what last night may have held. We have been
blessed enormously; God keeps giving us miracle upon miracle. We’re so
happy to have our tiny, beautiful daughter. We can’t wait until we get
to take her home. Our fingers are crossed that Monday’s tests hold more
good news.
Lily Grace Church
June 13, 2009 : 4lbs 10 oz : 17.25"
06.15.2009
No News YetThe tricky part about having a baby just after midnight on Saturday
is that most of the hospital staff is off for the weekend. And
sometimes things slip between the cracks. Like Lily’s MRI scheduling. I
guess everyone thought it was scheduled but then it wasn’t. So we’re
waiting until tomorrow morning to do the MRI and will hopefully have
the results by that evening, but you know how it is…things sometimes
take longer than you’d like. We’ll post results when we have them.
Meanwhile,
Lily’s doing really well. She’s having a bit of a problem with her
gag/swallow reflex, which is something we anticipated. But we’re hoping
that in time she’ll be able to learn how to do it a little better. Her
swelling’s gone down a bit (ie. she’s looking cuter) and we’ve had a
chance to hold her every day, which is really nice. She’s a sweet baby
girl. All the NICU nurses love her. And so do we. More news soon.
06.17.2009
Lily’s Diagnosis
Today was a big day. We found out early this
morning that Lily would be seen by an opthamologist and a neurologist
today, plus we hoped to receive her MRI results. After scrambling to
find a babysitter for Brady (thank you SO MUCH Crystal!) Craig and I
headed up to the hospital to visit our baby and be a part of her busy
schedule.
When we got there she was lying on her belly in her little
box, content to just chill. The nurse gave us a little update on how
she was doing and mentioned that she was having some problems with her
feedings again. She refluxes while she’s eating and then can’t seem to
coordinate how to swallow it back down again which tends to lead to her
aspirating a bit of her milk and her oxygen levels going down. They put
her on a tiny bit of oxygen to help keep her airways open while she
eats and that seems to have helped. The opthamologist came right on
time and took a look at her eyes. Shortly afterward the neurologist
came with a team of doctors and did a full exam as well. Then they met
with Craig and I to discuss their findings.
As far as they can
tell, based on observation and the MRI results, Lily has alobar
holoprosencephaly. This had been considered in the past, but dismissed.
The most recent MRI was much more informative than any of the
ultrasounds or the fetal MRI that was previously done so it’s now a
reliable diagnosis. Alobar holoprosencephaly basically means that the
brain is severely underdeveloped; small and lacking in structural
features. Every child with holoprosencephaly is different from the next
so there’s no real way to predict exactly what is in store for Lily.
Very few of the automatic reflexes we all take for granted will work
well for Lily. She can breathe and has a strong heart rate but anything
that requires mental coordination will be a struggle for her. Things
such as swallowing, balance, controlled motion, etc. Because she’s been
having problems with her feedings she’s been put on continuous feed,
meaning they are constantly dripping milk into her belly through her
naso-gastric tube. Since this afternoon she’s tolerated that well which
is a good thing. There is talk of eventually inserting what’s called a
g-tube, a feeding tube that goes directly into her stomach from her
abdomen. This will keep her from aspirating her food, which is her
biggest health risk at the moment.
The opthamologist says that her
optic nerves are small (makes sense considering she has a tiny brain).
He’s not sure how well her eye sight is, but so far she doesn’t seem to
be reacting to light much or focusing on anything imparticular. Time
and future tests will tell more.We don’t know what’s in store for Lily.
Our goal is to bring her home if we can, but only she can determine if
that will happen or not. Ultimately, we just want her to be as happy
and comfortable as she can and won’t make any decisions that will put
her in unnecessary pain. This week we’ll be seeing if she can tolerate
her feedings well, gain weight, and possibly maintain her own
temperature. These are the first big steps to coming home.
Craig and
I are still trying to process everything we’ve learned today. She’s so
beautiful and perfect that we’d been hoping her brain had somehow
healed itself and that all the former predictions were somehow wrong.
But that’s not the case; that’s not what the Lord has in mind for her.
Meanwhile we’re going to focus on loving her as much as we can every
moment that we have her. I’ve never been so grateful for eternal
families and for a Savior who somehow understands everything we feel
and have been through. And everything my baby girl is experiencing
right now. I know she’s not alone. And neither are we.
Thank you,
again, to everyone for all your prayers, love and help since Lily was
born and before. We can’t tell you what a support you’ve been.
06.24.2009Tuesday night Craig and I came up to the hospital to visit Lily.
While we were here she had quite a few desats (her oxygen saturation
declined drastically) and was having a hard time coming back from them.
In fact, Lily’s been fading away a tiny bit every day. Watching her
last night it was so apparent that she’s ready to go home, to her
heavenly home. The nurses told us that they weren’t sure she’d make it
through the night. So they set up a private room for us in the NICU so
we could spend time with her before she left.
While they were
setting up the room we decided to go ahead and give her a name and a
blessing. Now, we’d already named her Lily Grace Church and filled out
the birth certificate paperwork as such so she did already have a name.
Giving her “a name and a blessing” is a tradition we do in our church (The Church of Jesus Christ of Latter Day Saints);
it’s our way of formally presenting the baby before the Lord and having
her name put on church records. We don’t believe it’s necessary for her
to go to heaven or anything like that. It’s just a nice gesture and a
little milestone in the baby’s life. Usually it’s done at church on
Sunday by a few men who are either members of the family or close
friends. But since we didn’t think Lily would be around for very long
Craig went ahead and did it himself. Just before he did it we both
decided to change Lily’s middle name to Jane, in honor of a certain
nurse who has loved our baby with all her heart and looked after her as
if she were her own. There were so many nights we were comforted
knowing that Jane was looking after our baby; there was no one we’d
rather have. So I must apologize for the previous post announcing Miss
Lily Grace Church. I should have said Miss Lily Jane Church. It sounds right, doesn’t it? I love it.
After the blessing we took Lily into our private room and unplugged
all her monitors and tubes. She was so beautiful! We always think she’s
beautiful, but she’s just so precious without all her accessories. We
snuggled up with her on the bed and spent the night drifting in and out
of sleep. We really enjoyed the time we’ve had with her in our little
room. It’s sweet to just watch her sleep. And, as it turns out, she
decided to stick around for a bit. She’s still with us and has been
doing great so far. But Tuesday night made us re-evaluate everything
and what our goals are for her little life and how she’ll pass away.
We’re still making some decisions, but, as always, we’ll keep updating
the blog as events unfold.
The lovely Jane holding our Lily
06.25.2009
She’s Home!
After a little drama in the hospital Tuesday night and living in the
hospital the next few days (trying to see what Lily would do next), we
brought our little girl home today! She’s done beautifully. She had
quite a bit of excitement today: vital checks in the NICU, discharge,
riding in the car in her little car-bed (for babies under 5 pounds),
photography shoot with our whole little family together, a visit from
the hospice nurse. Quite a day for someone used to lounging in her
tanning bed in the NICU! But she was great! She didn’t have any desats
or troubles at all. And since this afternoon she’s been resting in her
little bassinet, perfectly content.
Thank you to everyone who made Lily’s trip home a reality. We couldn’t have done it without everyone’s help and prayers.
07.01.2009Lily’s been doing well since coming home. She’s a trooper and is
hanging in there. She has what we call “episodes” every now and again
where she aspirates and turns a little blue but amazingly she’s pulled
through them all, even a gigantic one on Sunday night. Today she began
showing her first signs of seizure activity, something that is very
common, even expected with her condition. The seizures aren’t like
adult seizures; they’re more like a little twitch right now. And she’s
such a sweet girl, she never makes a peep about them. The biggest
hurdle in caring for her is keeping her temperature regulated. She
can’t do it herself so we have to keep her bundled up, and use a
heating pad periodically throughout the day to keep her from becoming
hypothermic. We’re learning quickly, though, and establishing a regular
schedule for her care. We also have a wonderful hospice nurse who calls
daily and comes by about 3 times a week to check in on our baby girl.
It’s so nice to have a resource we can go to with any questions at any
time. We’ve really had fantastic medical personnel the entire time.
We’re very lucky. And we’re lucky to have had every day we’ve had so
far with Lily. We’re soaking it all in while we can.
07.04.2009
3 Weeks Old!Lily Jane is 3 weeks old today! I realized it this morning and
couldn’t believe it. We’re so lucky to have had her this long! There
are quite a few people who predicted she wouldn’t be here today. But my
baby girl’s a fighter. And she’s just not ready to go yet.
Here’s another thing I love: Now I Lay Me Down to Sleep.
NILMDTS is a non-profit organization that provides families of
terminally ill children with professional photographs, free of charge.
Photographers nation-wide volunteer to help. We were lucky enough to
have Erin Freeman of Erin-Beth Photography do a shoot for us at our house. She did an amazing job! We couldn’t be more thrilled.
If you live anywhere near the Salt Lake area, keep her in mind for
your own family’s photos. She’s such an amiable, sweet person and she’s
great with young children because she has one of her own. And, please,
spread the word about Now I Lay Me Down to Sleep. I can’t think of a
better memento to remember a child by.
NILMDTS Photos
07.15.2009
Happy Birthday, Lily!
(This is a few days late.) Lily turned one month old on 7.13.09.
Happy birthday, darling girl. We made you a cake. We promise it’s
delicious.
07.21.2009
Lovely Miss Lily
Lily is doing unbelievably well these days. Her major risk is still
aspiration (breathing milk or saliva into her lungs, impairing her
ability to oxygenate her blood) but she’s handling all of her episodes
all on her own. She usually has one or two a day. After a short period
of blueness she pinks right back up again, without any interference
from us. It will always be a risk factor but her nurse says she
wouldn’t be surprised if it wasn’t what took her life. Which means she
may be around a little longer than we thought! We’re still measuring in
months and weeks, but that’s much longer than we originally
anticipated. We’re thrilled! She’s nothing but sweetness all the time.
Her
head is growing at a rate of 1cm a week, which is definitely growth,
but it’s gradual. As it continues to grow it will get to the point
where it puts too much pressure on her brain stem which will then stop
sending signals to breathe. But there’s no reason to think that will
happen tomorrow or even the next day - and we’ll take every day we can
get.
She’s been growing these past few weeks. She’s 5lbs 3oz
and 19” long. Plus, her eyes have lightened up and are the same
gorgeous blue as Brady’s (this is hard to see in photos because her
pupils are constantly fully dilated…they look brown, but I promise
they’re blue). And she’s growing more hair! She was born brown hair,
kind of like a mullet. But the top is growing in now and it’s very very
blonde. So we have two blue eyed, blonde haired babies. Beautiful
things.
07.28.2009
Sleep Sweetly, Dear Baby
Our sweet Lily passed away this evening. I was holding her and Craig
was sitting with us when she left. She left peacefully and we don’t
think that she felt any pain. How we miss her already! But at the same
time we know that she’s where she belongs and that now she can truly be
happy.
Sunday she had a lot of trouble with her reflux and
aspirated a large amount of fluid into her lungs. Over the next 24
hours she developed pneumonia, which made it difficult for her to
breathe and get the oxygen that she needed. Her strong little heart
kept beating hard for a long time but eventually tuckered out. As it
failed she just stopped breathing. And she looks so peaceful now. She’s
such a beautiful thing.
We will miss her but we’re so glad for
the time that we were given. I couldn’t have ever wished for a better
gift than to have this beautiful girl be a part of our family. I’m a
completely different person than I would have been without her. We know
she’ll be well taken care of until we see her again. We will see her
again. And won’t that day be the greatest day ever?
Our family at Lily's funeral
08.01.2009
Lily’s Funeral
Lily’s funeral yesterday was beautiful - just like she was. We are
thrilled it turned out to be so lovely. So many people came to show
their respects and we’re so grateful to all of you. It was such a big
moment in our lives and we’ll always remember that you were there.
Also, thank you to everyone who has sent flowers (our house smells
fantastic) and notes. Everyone has gone above and beyond the call of
duty.
The service was at Mt. Olivet Cemetery, a gorgeous old
cemetery in Salt Lake City. We looked at a couple of other cemeteries
before we found this one but as soon as we saw the baby plots, we knew
this was the place we wanted for our daughter. It was established in
1874 so the trees are mature and there’s no end to the antique grave
markers; a family of deer live in the cemetery year-round; and the baby
plots are in the most beautiful location. Lily’s grave lies under the
shelter of a tall group of pines next to a tiny stream and waterfall.
The sound of the water muffles any city sounds you might normally hear.
We feel full of peace every time we stand on that shady stretch of
grass.
We arrived shortly after 10am. Craig and his dad carried
Lily’s casket to the grave site and placed the floral arrangement of
lilies atop it. Our wonderful bishop conducted. Craig’s sister Ashley
gave the opening prayer after which his dad shared some thoughts about
the divine nature of babies like Lily and the resurrection. My sister,
Brittany, sang a beautiful song, The Lamb, and then Craig gave his
remarks. Lastly, the dedicatory prayer was given, protecting Lily’s
tiny body from any harm until it is raised again in a whole and perfect
state.
There were difficult moments (like watching Lily’s casket
being carried to the grave site) and moments that made me smile
(Craig’s recounting of her break-neck speed delivery). When all was
said and done, though, we left the cemetery with a sense of peace. I
know that my baby girl is happy. She’s still very much alive, you see.
Her body has been left behind and safely preserved for the coming day
when she will take it up again (wrapped in a warm, fuzzy blanket and
wearing her Grandma Darlene’s crocheted booties). But her spirit is
never far from us. Though her body was weak, her spirit is strong -
stronger than anything I’ve ever felt before. I feel her with me
always. And for that I will forever be grateful.
The remembrance card I made for Lily's funeral:
Front
Back
08.06.2009
Incompatible with Life: A Diary of Keeping Daniel
I’ve been wanting to post about this for some time now but there was
always something else that was on my mind. Now, I find myself
reflecting on the words in this book at least as much as any other
topic, if not more. Incompatible with Life: A Diary of Keeping Daniel
was written by Kylie Sheffield, a mother in Australia who gave birth to
a baby with Trisomy 13 in 2007. She named him Daniel.
I found the book when we first learned about Lily’s differences;
when they initially told us she had Trisomy 13. It’s a PDF file and
isn’t terribly long so I’d finished the book before I learned that Lily
didn’t have Trisomy 13 after all. I’m so glad that I did! The
experiences that Kylie recorded, the thoughts she thought and feelings
she felt, were all nearly identical to what I was feeling. And now that
Lily’s passed on I can say the same about her experience losing Daniel.
As I was watching Lily leave I literally thought to myself “She did it,
I can do it. She did it, I can do it.” If you’ve been given a similar
diagnosis for your child, something they say is “incompatible with
life,” this book will give you something to hold on to, something to
steady yourself as the waves of uncertainty crash down around you. If
you’re not, this book will open your eyes to something you may never
experience yourself. But even if you don’t, I guarantee you you’ll meet
someone again someday that is in a similar situation. And maybe this book will make a difference then.
