The
truth
Allow me to preface this blog entry,
this is in no way a log of complaints nor a plea for sympathy. Today, it is
merely an insight into what life is like with Lily, as accurate of an insight
as possible without actually inviting perfect strangers into our home.
Today, Lily is celebrating 11 months
of life! That is quite the achievement considering we weren’t sure she was ever
going to make it out of the hospital 11 months ago. Today Lily is not quite
sitting on her own and she eats small amounts of yogurt and applesauce being
spoon fed. Today Lily has two teeth, one on the top and one on the bottom. She
has at least two more that are about to poke through. Amazingly, keeping in
stride with the way she has been, she is taking it rather well. A bit more
cranky than usual but no more than we have already dealt with.
Over the course of the last 11 months, beginning at about
three weeks of life Lily had in home weekly nurse visits for several months. She
has seen her regular doctor at least 10 times. Lily has seen “specialty”
doctors about 15 times, ranging from; genetics, cardiology, ENT, a swallow
specialist, GI, orthopedics and oxygen specialists. She has had by my estimation,
16 occupational therapy appointments, 10 physical therapy appointments, a
handful of visits with the birth-3 program coordinators and staff. Lily has
also seen chiropractors a handful of times as well.
Also over the course of the last 11 months, we have tried 13
different formulas, including goats milk. Lily suffers from extreme acid reflux
which landed her in the hospital in September of 2014. She choked so hard that
it broke most of the blood vessels in her adorable little face. My husband and
I have tried various “cures” for the acid reflux, including, Omeprazole and ranitidine.
Neither of which worked. We have tried coconut oil, chamomile tea, ginger root,
aloe vera and gripe water. Finally we got sick and tired of Lily being treated
like a case rather than a person and went alternative/natropathic. As it turns
out, Lily’s reflux is a direct result of not producing enough stomach acid and
needing to be on a pancreatic enzyme. It is due to her blood type. Honestly,
looking back, we should have just gone this route in the first place… But given
the special case that Lily is, I think we allowed her special needs and many
unknown factors to determine our decision more than we should have. Since Lily
has been on the enzyme, her reflux has been greatly reduced. Not gone but not
as uncomfortable and I believe much more tolerable for her.
A few days after birth
Lily was put on oxygen, she finally decided it was time to retire the tubes in August
of 2014. She had ear tube surgery earlier in the month of August as well. Lily
was on oxygen for almost the first 6 months of her life. Everywhere she went
she had tubes with her. At night she was hooked up to a pulse ox meter. She
regularly had a rash on her foot from where the tape had been. The first two
months of her life she was hooked up to the pulse ox 24 hours a day. The rash
was much worse then, even with changing the location on her foot multiple times
a day. She also had tape on her face, either on her nose to hold the tube in
place or on her temples. We had to change up where we taped her on her face
also because of skin irritation. Lily didn’t seem bothered by her tubes until
the last month and a half or so. Her oxygen saturation levels were beginning to
stay pretty consistent during the day when off oxygen. She was beginning to
test her new limits as to what her little body could do. We eventually were
able to keep her off the oxygen all day long with no problems what so ever. At
night she would go back on and her saturation level would stay in the normal
range. After about a month of only oxygen at night, Lily began pulling the
oxygen out while sleeping. The alarms would never go off on her meter because
she stayed within the normal range. It was as though she was telling us that it
was time to come off.
We continued to keep the pulse ox on her at night with no
oxygen just to be assured that this was really going to work. It sure has. It
has been 5 months without oxygen and Lily has been doing great without it. A
HUGE praise to God, the oxygen thing, while in the midst of it, seemed to be
something that we were never going to make it out of. I can’t even begin to describe
the odd looks we got from people when we would actually go places. Woman would
approach the infant seat, not seeing the tank or the tubes with delight, then
once seeing our little bundle their face would turn sour and ask what was
wrong. We both became so well rehearsed in our response, we had been asked too
many times to count. “Well, when she was born her lungs were under-developed,
so she needs a little extra oxygen until her body catches up.” The response
came automatically. It was usually followed by a nod, pushing out a smile and
the person quietly walking away. At first it hurt my feelings and made me not
want to go anywhere with her. I didn’t want anyone to just sit there and stare
or ask questions. I didn’t want to have to explain away the huge truth of our
life. God healed Lily in His perfect timing. It may have taken longer than we
had hoped but no less, He healed her.
As time has ticked along there have been some strong
character traits that have come forth in Lily’s little personality. We weren’t
certain if they were a trisomy thing (see blog about trisomy 9) or if it was
something else. So, one night I googled: why is my baby so crabby all the time.
I found an article by a Dr. Sears. If you’re curious, google it for yourself.
12 features of a high needs baby. I read through the article, then skimmed
through it again because I was in utter disbelief. This was our little baby.
This was Lily to a T. While the article didn’t necessarily give solutions to
caring for a high needs baby, it lead me to other blogs and resources and it
also filled my husband and I will some relief that there was an explanation to what it was we were dealing with. I
personally can’t offer any solutions either. In this 5-step to a solution sort
of world that we live in, there is no easy fix of solution to coping with a
high needs baby. And as difficult and as painful as this has been, in
combination with all of Lily’s other special needs, we still have hope. We have
faith that every day that we have Lily, God will provide just as He has for the
last 11 months. God has provided resources. God has provided money. God has
provided relief. Moreover, God has provided hope. There are days when we feel like
we have no hope. I won’t lie. There are days where we are utterly exhausted and
worn down to the nub because her reflux has been so bad and she is refusing to
sleep again and wants to eat around the clock. Yes, this does happen.
It’s the middle of the night again. She’s been screaming with
no hope of consolation (we’ve tried everything at this point) It’s 3 am and I’ve
managed to get 15 minutes of sleep. This may be all I get until she finally decides
to throw in the towel at 10 am. Yes there have been nights like this. This is
the truth. These are the things most people don’t know anything about. Her
reflux is out of control. She hasn’t pooped in 3 days. She getting a tooth. She
was around someone who had a cold. We can’t lay her down. She doesn’t want to
drink her bottle. She doesn’t want to be held. The Dave Matthews dvd isn’t even
coming to the rescue this time. Nothing is working. She’s in tears. I’m in
tears. What is left for me to do? So I utter a prayer. Many prayers actually. “Lord,
please help me, I can’t do this anymore tonight. This child has to go to sleep.
I have to go to sleep. There are so many things I need strength for tomorrow.
Another unpredictable day is ahead. That is the only thing I am certain of,
tomorrow is completely unpredictable. Please Lord, help us.” Lily’s cries turn
to whimpers on her belly, on her tummy time blanket. The tears that have run
down my face begin to dry and my shoulders drop a few more inches, the storm
has passed. I pick her up as gently as possible and tuck her into bed.
This is our life. This is what every night used to look like.
Sometimes the rocking and bouncing and music and crying and drinking milk would
go on for hours. As I said before, seemingly with no end in sight. What else is
a parent supposed to do? Pray. God hears me. He hears us. He hears Lily’s cries
and knows her ailments better than we can and do. So we pray.
It’s been no coincidence that we have been led to various
places and to various people for help and guidance. The times we followed the
status quo, it seemed to return to result of more questions. It was once we began to think outside of the
box and follow our “gut” or God’s leading as I would prefer to call it, I think
we have had more answers. My understanding thus far as to why God has given us
such a special gift is because we refuse to just label her as something. Rather than treating her like
someone. Someone very dear and special to us. We have set forth to go the extra
mile for Lily. To continue to search. To keep looking for answers and
solutions. And I’m hoping that in the meantime I can share it with whomever
decides to read these blog entries.
I labeled this the truth because on the outside, if you see
us out and about we may appear to be a normal family of 4. (whatever normal is
anyway, haha…) Lily’s older sister tagging along side of the stroller. My
husband or myself pushing the stroller and the other one of us not far from it.
But there is so much that goes on within these walls, as there is in any other
household, I would presume. But our life I can speak of, it’s the only life I
know now.
There is little time for my husband and I together alone.
There is little time or energy for leisure activities. Our days are filled with
a lot of Lily face time, no I’m not talking about the app for your I phone,
although it is similar. Lily isn’t interested in toys or books and any other “normal”
baby things. She prefers to watch what you do. And she just wants us, all to
herself, all the time. She studies. She watches and she sighs at times, furrows
her brow and when she is bored with that, she will surely let you know. She
will get a burst of energy out of nowhere and laugh a hearty laugh or make a
howling sound. I often refer to her as the quiet spider because she often is
content just watching the world around her. She is also commonly known around
here as the cutest waker-upper ever. She really is. She will lay in bed making
nearly inaudible sounds, just looking at her little bears that are printed on her
bumper. I am grateful to say that most of our days get off to a good start,
with smiles and quiet studying and laughter but that unfortunately changes
quickly.
My husband and I have
coined a few new terms and phrases that only we would truly understand. Such as
when describing our day- it was brain-melting. Or one-baby-circus. We can text
these things to each other or say them in passing and know exactly what we’re
talking about. If anything these new set of circumstances have helped us up our
game in the communication department.
With the winter
spewing it’s wrath all over Wisconsin, we certainly don’t go out much. We don’t
have a regular baby sitter. We don’t have regular visitors. In fact we talk to
less people now (not really by our choosing) than we did before we had Lily.
The reason for that I think, is because I don’t think people know what to say.
Because they know that with the events that have unfolded over the course of
the last 11 months, we got rocked. There is no other way to describe that
happened to our family. We did, we got rocked. We never saw this coming, nor
would we have asked for it. Having said that though, having Lily in our life,
we wouldn’t change a thing. If we did, we wouldn’t have her. And we wouldn’t
give her back for anything.
She is beautiful. She is captivating. She is the strongest
little person I know. She is a miracle in every sense of the word. There aren’t
enough descriptive words in the English language to describe how truly amazing
she really is.
Today Lily is 11 months old. God willing we are looking
forward to more of this story unfolding. We haven’t made it this far without
God’s help, I can’t say that enough. Thank you Lord for every day you have
given us with Lily. Thank you for entrusting her to us.
**disclaimer**
These are my opinions. My account of our life and our
experiences. Everything I have written here is not meant to be advice or a
directive of any sort. Regard the information here as you wish. I am merely
sharing our life experiences in the hope that there is someone else out there
who needed to read this, just at the right moment, to know that they’re not
alone. Much like we felt like we were alone at points too, until we found
someone else who was going through what we are going through. I wish you
Godspeed in your personal endeavors to finding a solution that WORKS for you,
whatever it may be. Everyone is different and different things work for
different people. God bless.
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