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| Here are a few pictures from Nolans first 2 1/2 months, before we ended up back in the hospital |
Other
than waiting 12+ hours longer than we had expected for him to make his arrival,
we had a pretty uneventful stay in the hospital and were discharged the very
next day. Of course, I am leaving out the fact that days 2-4 of his life were
filled with almost constant crying on his end until my milk miraculously came
in somewhere between day 4 and 5 giving us a few moments of peace and quiet.
Really
though, we were on cloud 9. We were spending our days cuddling with the most
perfect beautiful baby ever, and he just happened to be ours; and other than
some slow weight gain in the beginning, which is pretty common among
breastfeeding infants, we had no reason to fear ending up back in the hospital.
Nolan
started spitting up an excessive amount right before his 2 months checkup.
While I understand “all babies spit up” I knew this wasn’t normal. Picture
exorcism style spit up, spraying (and soaking) the chair, yourself, the crib,
whatever happened to be in his path. I'm talking soaked, head to toe, and
having to completely change clothes, undergarments included. We ended up
getting some reflux medicine from Nolan's pediatrician, with hopes that this
would be the answer to our problems.
On
the morning of September 5, I woke up around 5am and saw that Nolan had slept
through the night. After freaking out and confirming that he was, in fact,
still breathing; I started to smile, we really do have a perfect baby. I crawl
out of bed, planning on feeding Nolan and trying to get a couple more hours of
sleep before we start our day.
This
is when I realize something isn’t quite right. When changing Nolan’s diaper I
notice that it is dry, as in he had not gone to the bathroom ALL NIGHT LONG.
Maybe our perfect baby is already potty trained? I also noticed there was some
sediment in his diaper. The closest thing I can describe it as is little grains
of sand. In my nursing opinion, I assume it is uric acid crystals, also known
as “brick dust”, feel free to Google it.
At
this point, I am worried, not out of my mind worried, because I always assume
nothing is actually wrong, but still worried. Nolan struggles with nursing, he
just wasn’t really interested, keep in mind he just went 8 hours without eating
and should be ravenously hungry.
The
next couple of hours are pretty uneventful. Joe wakes up, we decide it’s no big
deal and I will call the doctor when they open. Joe leaves for practice, and I
just cant shake this feeling that something is wrong. I decide to get ready and
head to Fort Worth so I will be there when the doctor’s office opens, stopping
by practice on our way to assure Joe everything is okay.
After
several phone calls to Joe, my parents, the nurse at the doctors office (which
only resulted in me becoming extremely angry at her for asking if my 2 month
old son had played outside and could have put sand in his diaper, and advised
me to watch him for the day and call back the next day), Nolan and I headed
straight to Cook Children’s Hospital.
Nolan’s
lab work was completely out of whack when we got to the hospital. His blood
sugar was 48 (normal is 60-100), white blood cells were 4x what is normal
(which is huge for anyone, especially an infant), liver enzymes were extremely
high, clotting factors were off, ammonia was high. We were pretty lucky that we
ignored the nurse’s advice and decided to go straight to the hospital.
I
wont go into too much detail about our hospital stay, but here is the just of
it. We had several pediatric specialists looking after our little boy,
including a hospitalist (Nolan’s general doctor), an infectious disease doctor,
gastroenterologist (GI), endocrinologist, and a metabolic geneticist. Since
being in the hospital we have had follow up appointments with the last three, and
have also seen an eye doctor.
Let
me start by saying, Cook Children’s truly does have the best doctors you can
ask for, we were thoroughly impressed with the level of care Nolan received and
with the amount of time each doctor spent with us each morning explaining the
plan for the day. We knew each and every day that our team of doctors were
working on finding an answer and getting Nolan well enough to go home.
Throughout
the whole stay we were continuously told that Nolan was quite the “puzzle”.
The doctors were really working as a team, we had several doctors in each
area all working together trying to figure out what was going on. Nolan fit the
description of several different illnesses, but for each one he was missing a
key element ruling it out. Each doctor had their own theory and one by one
Nolan would prove them wrong, all except for our metabolic geneticist, Dr. B.
Dr.
B presented us with a disorder called Congenital Disorder of Glycosylation Type
1B, an extremely rare but totally treatable disorder. No parents want their
child to be diagnosed with a genetic disorder, but if it had to happen this
seemed harmless enough. In telling us about CDG 1B, Dr B briefly discussed
another type of CDG, CDG 1A. CDG 1A was a much scarier option, but based on
Nolan’s clinical presentation Dr. B was fairly certain this was not what Nolan
had.
So, on
September 14, after 10 emotionally and physically draining days in the
hospital, we were finally sent home. Dr. B had her test sent off and we were
expecting the results in the next couple of weeks.
Dr B called us with lab results on September 18, Nolan has CDG Type 1A, a much
scarier form of CDG. We were devastated, how do you process information like
this? Our perfect and beautiful baby boy had inherited a genetic disorder that
will effect his physical and neurological development as well as every organ in
his body. Not to mention 20% of infants diagnosed with CDG 1A don’t make it to
their 1st birthday.
It didn’t seem real, and sometimes it still doesn’t. We are still convinced we
have the most precious perfect baby boy ever; however there is a grieving
process we have to go through. Though we aren’t grieving the loss of our baby,
we are grieving the loss of the life we thought we would have, the life we
thought Nolan would have. Gone are most of the dreams we as parents have for
our children. Even the smallest things like playing on a tee ball team to
riding a back seem unrealistic. Now we are more concerned with his blood sugar
levels, and achieving basic milestones such as being able to sit up, walk, and
even speak.
I will post a CDG mini lesson soon for
those of you who have never heard of it. Until then, one of our sweet friends
wrote a blog post about Nolan and CDG and you can find it here.
I wont lie, I am a little hesitant to tell you to go read her blog, after you read her blog my lack of writing skills will be even more obvious. Really though, if you are looking for a new blog to follow I strongly recommend her, I find my self lol'ing every time I read.
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| Here are a few pictures from the hospital. I hesitated to put the top right one in because he looks so bad, but I thought it showed how bad he was looking, these chunky cheeks of his are all due to swelling, as you can see in the bottom picture he was a skinny little boy. On our way home we had to stop and eat some BBQ with Papa. |
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| We did have some fun while in the hospital, all of these were toward the end of our stay when Nolan was starting to feel better. Of course I had to throw one in of his sweet baby mullet. |
.JPG "Nolan's Baptism")
