Makinley Briana Heard
Makinley was born on April 6th 2014
at Allegiance Health. She weighed 7lbs and 1oz and was 3 weeks ahead of her due
date, although she was considered to be a full term baby as I was 37 weeks
pregnant. She was born on the morning that my baby shower was planned for so my
husband Jordan and I were frantically calling everyone and telling them that
the shower was canceled because I was in labor, we weren't exactly ready but we
were excited!
We arrived at labor and delivery
around 10:30AM and I was well into my contractions! Within 15 minutes of being
there my water broke! This was it we were definitely having our little girl!
The nurse came in to check me and found that there was meconium in the fluid
which means that Makinley had a bowel movement while inside my stomach. This
can be dangerous because the baby can aspirate some of the meconium laced fluid
into their lungs, known as Meconium Aspiration Syndrome. Although the nurses
didn't seem too concerned with this finding it was enough for me to start
worrying. Thankfully I know a bit about what happens when infants aspirate
meconium and wasn't too alarmed myself. We were then taken to the delivery
suite where I continued to have some pretty intense contractions. I began to
remember the joys of labor, I wondered if it would all come rushing back to me
since I haven't been in labor since my son Owen was born 11 years ago. It turns
out you don't forget that pain! With each of my contractions becoming more
intense the nurses noticed that Makinley was feeling some distress, her heart
rate would fall with each contraction, pretty dramatically at times. The doctor
came in and saw me and thought that maybe the cord was compressing Makinley's
head or the force of the contractions was putting pressure on her head and
lowering her heart rate. They decided to monitor her and wait to decide whether
or not they would perform a C-section. I was completely overwhelmed at this
point and knew somehow that something was very wrong. I could feel it inside me
and I started to cry. I looked at Jordan and told him something was wrong, he
was very reassuring telling me not to worry and the nurses and doctors didn't
seem too overly concerned either but I simply knew it wasn't right, I don't
know how but I knew.
Makinley was born at 4:08PM and they
immediately took her away, they suctioned out her mouth and lungs but she still
wasn't responding correctly. There was a whole team of people running around
her and everything was chaotic and scary. I wanted so badly to hold my baby, I
didn't even get to see her before they took her away. Jordan followed her out
of the room as they ran her down the hall. I was left in the room with my fears
and worries and didn't know what to think or do. After a while a doctor came
back in to speak with me and told me that that they noticed some anomalies on
her body. He told me that there was a single crease that went across the palm
of her hand instead of the many lines that our palms have, he told me that
there was a thick patch of skin on the back of her neck, and that her toes and
ears were misshaped. I sat there confused wondering what this all meant. He
finally told me that he suspected she may have a chromosomal disorder, possibly
Down syndrome. I sat frozen, my body felt numb, my mother and best friend Evon
tried to comfort me but I don't think I heard a word that was said. My baby had
meconium that was it, I knew how to handle meconium. Down syndrome? Where did
that come from? That wasn't a possibility. It couldn't be that. I was
devastated. It was two hours after she was born before I finally got to meet
her. It was the longest two hours of my life! When I finally saw her
she was still puffy because she had edema and had retained a lot of fluid, it
was a bit overwhelming to see though she was still so beautiful. I was crushed
my perfect little girl was going to grow up with a disability... How would I
cope with this? How was this fair?
The doctors told us that they would
do a blood test that would study her chromosomes to figure out what was wrong
and if she indeed had Down syndrome or some other kind of genetic disorder. A
slew of doctors came and evaluated her and all agreed that something wasn't
right but no one was clear on what they were seeing. They all seemed to keep
going back to the likelihood of Down syndrome but said they couldn't be sure
until the test came back and that would take up to two weeks. The doctors told
us that most of her anomalies supported Down syndrome but now they were
noticing more abnormalities that they hadn't previously seen. Her eyes weren't
completely formed and had keyhole shaped holes in the front where the pupil is supposed
to connect, what did this mean? Would she be blind? Could glasses correct this?
The doctor didn't seem to have any answers and said that she would have to
be seen by an optitrician. She called Makinley's eye abnormality a
Coloboma and said that it is very rare and is associated with a
chromosomal disorder but that it did not support Down syndrome. So what
was it? We would have to wait for more information....
Makinley was also having
trouble keeping her oxygen saturations at an appropriate level so she was
placed on oxygen. She would have episodes where she would get upset and stiffen
her limbs and hold her breath. It was very scary, she would lie there and
refuse to breathe, we would watch as she turned red and then purple and finally
a dusky blue, her saturations would fall into the 60's until she came of
whatever state she was in. It was so frightening to watch her do this and not
be able to help her.
I started posting on Facebook to
update my close friends and communicate my feelings, it helped focus my anxiety
and express my fears. I started posting on April 6th. Here are the posts from
that day....
April 6th 2014
- Baby Makinley Briana Heard is here!! Born at 4:08 PM she weighed
7lbs 1oz and was 19 inches long. She is having some difficulties and is on
O2 in the special care nursery. They are also concerned that she may have
some genetic type of problems going on but no definite signs so they can't
be sure without further testing. Please keep our baby girl in your
prayers!
- She's having trouble keeping
her oxygen saturations up and she won't eat. They are also starting her on
IV antibiotics and took blood cultures. She looks so much better now
though! She's a little fighter!
April
7th
- Just called to check on our
little princess and she's been doing great! She's on 1L at 21% (which is
what room air is 21% oxygen) and keeping her O2 sats up! She drops a bit
when she fusses but is doing much better! She may get to come off O2
completely if she keeps up this improvement during the day! Her blood
sugars are good and she's lost a lot of her retained fluid! She weighs a
1/2 oz. lighter now which is good! She gets another round of antibiotics
at 5am. Our little fighter is doing so much better right now! This mommy
is all smiles!
- Slept terrible pretty much been
awake all night. It's going to be another long day but I'm happy to hear
my baby girl had a good night!
- She's completely off the oxygen and
satting 100%! She still drops a bit when she fusses but is doing much
better than yesterday! Waiting on a X-ray for her tummy now
- Talked with one of the doctors they are
going to get a CXR of her belly they are concerned with possible fluid in
her tummy and there's some issue with her bowels. They are also still
concerned about the genetic disorder and will do that testing today too
but the results will take a couple weeks. It's going to be an agonizing
wait. All of this is so emotionally draining. I'm trying my best to keep
it together but this is so hard.
- She's being put back on the
nasal cannula at 1L 21%. She's had some desatting events and needs some
extra support.
- The ultrasound came back with
trace amounts of fluid around her organs but looks pretty good. They are
going to try feeding her tonight!
- They will do an echo of her
heart later and some imaging with her brain to make sure all is well....
Please keep the prayers coming!
- She was able to eat!!! Not very
much but did better than they thought! I am so happy with this!!!!
- Loved nursing the baby! Finally
felt like I was doing something to help her! I've been feeling so helpless
throughout all of this. Love you baby Makinley!
April
8th
- Finally holding my little
angel! She's so calm and peaceful right now. Just holding her close and
loving this time with her!
- She is getting the echo done
now. She's being really still and calm while they do it. They have a TV
where they will call doctors in Detroit to read the test and do a live
consult. Keep praying for our baby!
- The echo was good no major
heart abnormalities. There are two small holes in her heart but they think
they will close in time. She will need to see a cardiologist at age one. So this
is good news but doesn't tell us much about what actually is wrong and
causing her problems. They are in the process of finding a hospital to
transfer her to with the first choice being Mott but they are full so now
we are looking at either Detroit or Grand Rapids.
Makinley
was transferred to Helen Devos Children's Hospital in Grand Rapids on the evening of April 8th
via ambulance. She had two of her desaturation spells before they left
Allegiance. Jordan and I were so scared as we watched our baby be put into the
bed for transport.
April
9th
- Whenever I hold my little girl
the pain goes away. And nothing else matters. Love you Kinley!! — with
Crystal Heard. (post from her dad)
- Our little Makinley was a rock
star last night! She's doing so well, no major desaturation events since
she's been here and they even just had to give her a new IV and had to
poke her a few times. She fussed very little and did not desat! She is off
O2 and doing wonderfully and she has had 3 bottle feedings of 20ml and
tolerated them all well! She drinks most and does the rest in the NG. She's
been keeping the food down and I even got to change my first diaper and
she pooped! Yes, I am elated to have changed a poopy diaper!! I also got to feed her this last time
and was able to pump all but 5ml so she could have less formula! They are
coming any minute now to do the ultrasound on her brain and spine and the
geneticist will be here sometime this morning to have a look at her and
try to piece some of these signs together! They don't expect immediate
answers but I feel like we're finally making some progress! Please pray
that she continues to do well!
- A little Makinley update for those of you
who are interested. She's continuing to tolerate the feedings well.
Sometimes she will bottle feed but most often she doesn't show interest
and has to be fed through the NG tube. They have doubled the amount of
milk for her feedings from 20ml to 40mls, she's only had one feeding at
40ml and tolerated it pretty well but did spit up a bit because she's not
quite used to the change. She only recently went from 5ml to 20 ml and now
to 40 so she's adjusting well! The geneticist came and saw her today and
has an idea of what her genetic disorder may be but we are waiting on the
test results so we aren't comfortable sharing that information just
yet. Occupational therapy will see
her tomorrow to work on getting her to suck better and try to increase her
desire to feed. She had a brain and spinal ultrasound this morning but I
haven't heard any results from that. She will have a repeat echo of her
heart tomorrow so the cardiologists here can see the holes in her heart
and check her pressures in her lungs. They want to try to get her off of
her IV tomorrow as long as she continues to do well with feedings. She has
been stable and episode free still (no periods where she stops breathing
and drops her saturations) keep praying for our sweetheart!
So
far we felt hopeful and were starting to feel some relief. We were getting used
to the idea of possibly having a child with Down syndrome or some type of
learning disability and had decided it wouldn't be all that bad. It wasn't how
we'd planned it but it was going to be ok. We had a huge support system and we
knew that we would all be ok.
April
10th- This is when the real nightmare started, things were starting to go
downhill. Just as we started to feel ok with what we were facing we were hurled
in another direction and other scary factors started to present themselves.
- Makinley had a rough night and is still having some
trouble today. She's no longer tolerating the feedings and throwing up
large volumes and having loose stools. She is also having frequent
desaturation spells again. Seems like it’s always one step forward two
steps back but we will figure out what baby girl needs. It's just taking
some time.
- Turns out she was given formula
last night and this morning because I hadn't supplied enough milk. They
gave her this last feed with only breast milk and she tolerated it! Didn't
spit any up and took 50ml!!! She's been so good since this morning! No
throwing up and no spells! The nurse said maybe she's just going to be a
baby that will only drink my milk! Hope she continues to do well! Sorry if
this post was a bit on the personal side lol
- It felt so good seeing my baby
wear her first outfit. Moments like this makes me not worry about the bad.
(post from her dad)
April
11th
- Makinley is off to her MRI. Poor baby is all squeezed in this
thing that looks like it’s made of gym floor tumbling mats. The ultrasound
found fluid in both ventricles in her brain so now she's having an MRI.
Her eyes also didn't form correctly and so they think something might be
structurally wrong in her brain so the test will check that too.
April 12th
came at us like a ton of bricks. Down syndrome seemed like heaven after the
news we would receive this day. The results of the MRI were back....
- Constantly being kicked when
I'm down. Can I please get a break? Can I go back to first day when I
thought I was facing a child with Down syndrome? Can I have that
possibility back, when will this stop?
- The MRI results revealed that
her brain is underdeveloped and small and the areas that are supposed to
have the groves are flat. This is a bad sign and they worry about her
being able to eat, walk, and talk, among other things and she will likely
be quite cognitively impaired. We have to wait for the neurologist to talk
to us more about it. They have put another feeding tube in that puts the
food straight into her intestines instead of her stomach and she may need
surgery for a permanent feeding tube in her stomach at some point in the
near future. She is now on bilirubin lights for jaundice and back on 70%
Oxygen. We are still waiting on the test results to show what chromosomal
disorders she has and she may need more fine-tuned genetic testing to find
the answer or no answer may ever be found. Time will tell the extent of
her abilities that will be affected but this is where we are currently...
- I am not strong. I'm broken,
I'm lost and confused and hurt and angry and scared and numb and so many
other things. I don't know what the future holds and I don't know how I
will endure I'm just going through the motions day by day, unsure of what
to do and unaware of the world around me. I know I have to hold it
together and be there for my precious baby girl and I know that everything
will work itself out. I will have to endure and I will be ok but right now
I am not strong, I am broken.
April
13th
- Woke up to a phone call from
the doctor. Yet again more bad news... As I think I said yesterday they
placed another feeding tube straight into her intestines because she kept
throwing up her feeds... Well she continued to spit up stomach acid all
day and night and sometime last night started to spit up large amounts of
green stuff which indicates that her bowels are no longer functioning
properly. They placed a tube down her throat to suck out the waste and
stop her throwing up but were sucking out very large amounts and had to
stop her feedings completely and feed her fluids through an IV line in her
head. Her electrolytes are imbalanced because of all of her vomiting and
she has been having a hard time breathing. She will have a GI test done
this morning to find out why or how her bowels stopped functioning.
Everyday looks more dark for my poor innocent baby girl
- I have hope I can take my baby
girl home. Every day it seems like Satan is trying to take her joy away
from me. I've been holding her, feeding her and looking into her precious
eyes. As of yesterday her eyes were in wraps so I couldn't see them. They
stopped her feeding for safety reasons and now they have an IV in her head
so I can't hold her. My faith is high but I'm tired of getting beaten on,
she's here with me so I'm strong for her. She's fighting and I'm in her
corner, and I will always have her back. Stay strong Kinley!!! (post from
her dad)
- I wish that being in the NICU was all we
were facing. That she could have just been a preemie baby or a Down
syndrome baby or even have something that could possibly be fixed. She's
not a preemie, she is a full term infant with major medical issues that
can't be fixed. We have to sit here and watch her every day get worse and
watch as new problems arise. Watch as her body shuts down because her
brain can't communicate what to do. We don't know the outcome, only time will
tell who she will be. We don't know how functional she will ever be or if
she will ever make it out of the NICU. It's not as simple as a child born
early. Preemies usually do survive, they fight tough battles and I know
how scary that is but their odds are generally good. I hate sitting here
seeing her this way and not knowing what will come of it. Stay strong my
sweet angel and keep fighting we are here by your side every step of the
way. Daddy and I love you with every beat of our hearts and every breath
that we take and we wish we could take this all away. We wish we could
carry this for you. We will not stop fighting for you princess so hang in
there baby girl. We love you!
- Her labs weren't good her
sodium has dropped significantly without explanation and her white blood
cells and inflammatory markers are elevated and her blood pressure has
been high since yesterday. She will be getting blood cultures, urine
tests, and a spinal tap and will be started on antibiotics
- She just got a spinal tap they
are checking her for meningitis. She also had blood cultures drawn to see
if it’s some other type of infection.
April
14th
- I'm hurting so bad right now.
Trying not to question God and his choices on what he does for us. I know
there is a light at the end of this tunnel, but it’s covered by all these
questions of why and how. I tell God this is not how I wanted her to start
off. I look at my little girl and I tell her I want you to have the best,
be the best and want the best. Maybe I'm caught up in this image of how a
perfect life should be and that's why I'm hurting so much because it looks
so far for her. This precious girl is mine and I wouldn't change it for
the world, but my mind is telling my heart to hurt. Why God? Help me
understand. (post from dad)
- The doctor just came in and
talked with us and said her sodium levels are coming down and they haven't
pin pointed an infection. The cultures haven't grown anything but her labs
still reflect something. If there is no growth still tomorrow they will
discuss stopping the antibiotics. Her blood pressure is still high so a
nephrologist will be coming tomorrow to see her. Her kidneys are small and
may not be functioning right. If this is not the case it's likely she has
what's called essential hypertension basically it sounds like they don't
know the cause of the hypertension but she will need daily medication to
control it or it will cause problems with the functionality of her blood
vessels. The results of the chromosomal testing is still not in but the
geneticist is coming to discuss the MRI further and talk about what a
possible life at home will likely look like. The doctor basically said we
should face the fact that her developmental outcomes don't look very
optimistic and she is facing many obstacles. They also said surgery will
be here to consult us about the g tube placement which will be placed into
her stomach from the outside and she will be fed through that. They have
made a decision that she will need that and will likely get it sooner than
we originally thought. For now they will reinsert the intestinal g tube to
start her on her feeds again. They mentioned trying to transfer her to
Mott to have the surgery since when she finally does make it home she will
need a lot of follow up care and will need to see several doctors so if we
switch her care there it will be closer for us to travel with her.
Occupational therapy came and saw her today to try and work on her desire
to eat but she was not compliant again. They told us to do some oral
stimulation techniques with her when she is awake although they don't feel
she will likely take to it. Her overall goal is to get home safely but
there's not yet a light at the end of that tunnel.
- If ever I thought I'd suffered
a broken heart in my past I am now finding out that there is a pain much
deeper that seems to consume me and rob me of my spirit. I look at my baby
girl so innocent and sweet and watch as she suffers and am told what her
life will likely look like and I can't find an answer as to why this is
happening to her. This week has been such a roller coaster and everyday
blends into the next. I have no real concept of actual time. I have been
filled with hope and amazed at the love being poured out for her and felt
as if solely based on that this would have to turn around. I've hit rock
bottom as well feeling as if I've been dropped in this nightmare that I'm
fighting to turn around but I can't find the way in this darkness. I'm
just here. Just stuck here waiting and wondering what's next?
April
15th
- Our sweet Makinley! She had a
fairly good night, she's back on oxygen again. They tried her off for a
while yesterday but she didn't tolerate it. I'm waiting to hear the
results of her most recent lab draw to see how her sodium levels and white
blood cell count is. We are also waiting to hear if she has meningitis or
just some other type of infection. She is on a broad spectrum antibiotic
while we wait for the test results. She's off the bilirubin lights as you
can see in the picture. So that's good! We can see her pretty face and she
can be bundled so she feels more secure. We are also anxious to hear the
results of the chromosome study and to find what other testing if any may
be needed for that. We are hoping for some sort of diagnosis so we have a
better idea of what she is facing. Keep praying for our little love bug!
- The hospital chaplain just came
to see baby girl. Very nice guy. We were happy for his visit.
- Just spoke with a few doctors
on Makinley's medical team and got a little update on our Kinley doll.
They have increased her feedings from 4ml to 8ml that's still nowhere near
where she needs to be but it's doing pretty good. They are hoping to have
her feeds increased back to her previous level by Thursday. They received
the results of the chromosome study and they show normal results, however,
they are obviously not normal and will need more tests to determine where
the problem is. The doctor explained that even though she has the correct
number of chromosomes and one X and one Y chromosome, the problem either
lies with parts of the chromosomes being missing or misplaced and attached
to other parts of chromosomes or completely rearranged. The next test they
will do is called CGH which further compares her chromosomes with that of
normal chromosome placement. If this test also comes back normal than
there is a single gene that didn't change and there is no test that can
pin point which specific gene it was. So we still have no genetic answers.
They were also unable to give a clear picture of what to expect developmentally
and hope to have more answers with the next test. The nephrologist also
met with us and talked about her high blood pressure. He said her kidneys
appear functional but are small and the high BP may be stemming from her
disorder, her brain (most likely) or stress. They have ordered a
medication to treat this but she hasn't needed it yet because her BP is
normal now. The concern with her kidneys is that she may begin to grow but
her kidneys may not which is sometimes common with this finding, in this event
her kidneys will no longer be functional and she will need additional
medical intervention. She will need a repeat kidney ultrasound in a month
to monitor growth. The nephrologist also mentioned that there could be a
problem with a gene that causes something they call PAX2 or maybe that's
the name of the gene I'm not sure but anyway this genes role is with the
brain, eyes, and kidneys which are all affected in Makinley so they think
this may play a role. They are still working out trying to
transfer her to Mott. They are trying to determine if my insurance will
allow the transfer. They think that it will but may not cover the
ambulance ride and she can't get there otherwise. They did mention
however, that sometimes the hospital will pick up that cost so they will
let us know as more information is available.
- The discharge nurse just came
in and said our insurance approved her transfer including the ambulance
ride. All we are waiting on now is an available bed at Mott, they said the
earliest would be Thursday.
- Sitting in the lobby with
Jordan watching a little girl jump around and play with her mom and I
couldn't help but cry. You don't realize how much of life you take for
granted until you’re faced with the prospect of not being able to do those
things.
Makinley
begins the climb back up the hill.... We are feeling a little hope...
April
16th
- Miss Makinley is tolerating her
feeds so well! They will increase them again tomorrow and hopefully be
able to take the tube out of her throat! Keep it up love bug!
- As I'm sure you've seen by now
Makinley is off her IV which means she is tolerating larger feeds now! Her
glucose level is good and she is finally gaining weight! They may also be
able to remove the tube from her throat today! It feels so good to finally
come in and receive some good news instead of all the negative! Good girl
baby keep it up!
- The nephrologist
just came in and gave us this which shows the trends in her blood
pressures. As you can see they were very unstable at first and trending really
high now over the last 2 days they have been much more stable and she has
required no medication!! He said she looks great! They are still concerned
about her kidney growth but we will just have to wait for time to tell
that outcome of that but for now we aren't going to worry about that we
will get there when the time comes for now we will just PRAISE GOD for the
blessings he's giving her! Go Kinny Girl! Keep fighting! (I had a chart
attached to this post that showed the trends in her blood pressure but I'm
not sure how to add that here.
- They've increased her feeds
again but she's getting a lot of junk from the tube in her mouth meaning
she's not handling it all that well. They won't be able to remove the
tube.
- Looks like we won't be heading
to Ann Arbor tomorrow after all. Thru checked with them and there won't be
a bed available so they will check back in with them on Friday.
April
17th
- Makinley had a pretty good night again. The nurse
didn't have anything major to report! I got her dressed in a cute little
pink dress today! She looks adorable! She has started doing this little
scream thing when you aggravate her, it's really cute! Her daddy is in her
room holding her now. She is always so content in her daddy's arms!
Occupational therapy came to see her again today but she didn't show much
interest again today. They are hoping that if they are able to get her
back to stomach feeds or once she gets the G tube surgery and
gets the tube out of her mouth she will show more interest although they
aren't fully confident that she will.
