Christmas was by far one of the hardest days with Logan was still in the hospital. We did not want to be away from him for one moment of time but also wanted our daughter to have the opportunity to celebrate Christmas in her own home with both her parents. After being shuttled back in forth from the hospital daily and never having the two of us at home at once since Logan's birth, it broke our hearts to think of her spending Christmas in the hospital or with only one of her parents. However it was also heart wrenching to think Logan would be without us at the hospital. In the end his nurse convinced us that they would be sure to give him extra love and attention and we should spend the morning at home. As the care in the NICU had been nothing but impeccable we were able to be convinced and spend a few hours at home together followed by a reunion as a complete family at the hospital. Christmas day was the last day Reyna was allowed in the NICU (due to winter age restrictions) so we really enjoyed this time all together.
Saturday, May 19, 2012
The Start of Something New
The beginning was quite a blur. I remember many doctors coming and speaking
with us. Sometimes it would be good news
and sometimes it was terrible news. At
first we weren’t even able to try to feed him because they weren’t sure if he
would be able to take or process food safely, even breast milk. Seth and I spent a great deal of time sitting
together in tears with the full range of emotions cycling through us. During it all we were there for each other
and I am so grateful to have had him with me through it all. He truly was the only person who was going
through exactly what I was as well. I am
amazed that we managed to get through those first few days and somehow still care
for Reyna. I can’t imagine what the very
beginning was like for her. Despite all
the upheaval in our lives she amazingly remained flexible and cheerful.
During the first few days they ran multiple tests in the
first two days and we learned a huge volume of information. The obvious was confirmed, Logan had a severe
and atypical cleft lip and palate. It
was wider than normal and parts of his nose did not develop that normally do
even with a typical cleft. An MRI
confirmed that he was born without his right eye and his left eye was so
severely underdeveloped that it would also have no sight whatsoever. The MRI also revealed that he had some brain
differences. A large part of his corpus
callosum, the pathway between the two hemispheres, did not develop. He also had some other more minor differences
in his brain such as fatty deposits called lipomas. More frightening they found that part of his
brain was protruding through his skull in the forehead area and he would need
brain surgery in the next day or so. As
it turns out, this part was an initial misreading of the MRI and Logan
thankfully did not need brain surgery at all.
We also got the wonderful news that his heart, lungs, and kidneys all
looked great. In addition, despite
differences that often indicate spinal cord defects he had none found.
As more and more positive news came back they allowed us to
begin to very cautiously feed him. Due
to the cleft Logan was unable to naturally breast feed, but I was able to pump
milk for him. It felt so good to be able
to do something for him as he lay there so vulnerable in his hospital bed. At first he ate by drops from a syringe but
eventually we began using a special cleft lip and palate bottle with him as he
ate more.
As Logan’s tests were completed one last big question
loomed. Would Logan be able to
hear? Now that we knew he was stable and
likely going to survive this question became vital. It seemed like the last thing, at least at this
point in time, that could greatly impact his quality of life. The first test came back inconclusive and
they needed to do a retest. Then in his
bed we found most wonderful card we had ever received. On a small square of colored cardstock Logan was
awarded a shiny star for a passed hearing test.
It was without a doubt the best Christmas present ever.
Logan's Arrival
My labor with Logan progressed steadily and things seemed to
be going smoothly. Yet when they broke
my water they noted that I had Polyhydramnios which is too much amniotic
fluid. Despite all my specialized
sonograms this had not been previously noted and of course added to my
worry. Almost immediately after breaking
my water I was pushing. Suddenly many
people joined the room since Logan was at high risk and would likely need to go
to the NICU. The pain was excruciating
and notably different from that of Reyna’s labor. I, who was determined she’d never be that lady screaming at the top of her
lungs, was likely scaring every expectant mother in the entire state
hospital. The whole room seemed a whirl
and I remember Reyna, for whom we had no one to watch, being taken in and out
by kind nurses and Seth turning sheet white and nearly passing out. Thankfully the nurses had him sit and drink
some juice and he was okay. He later
shared he thought he was going to lose me or the baby or maybe even both. With the level of pain in that moment I would
have agreed with him. At the time I
thought the reason it was so bad was because of the prediction that Logan would
be around ten pounds. As it turned out
Logan was only seven pounds two ounces.
The pushing was so difficult because his soft spots, which normally help
the head mold during birth, were fused.
We didn’t know this until later but other differences were immediately
noted.
Logan cried a nice loud cry immediately and it was the best
sound in the world. He was bright and
pink and had Apgar scores that rivaled his clearly healthy sister. Due to this immediate positive look they
allowed me to hold Logan. As I embraced
him I took him in and despite his obvious large cleft he was precious to me
instantly. As I began to look at the
details of his features I started to be washed with worry. I noticed his ears had skin tags all around
them and then immediately after noticed this I saw he was not opening his
eyes. This realization was one of the
most defining moments in my life.
Everything seemed to stop for a moment in time and then I was filled
with panic. I alerted the nurse to this
realization and Logan was immediately swept from my arms.
Seth and Reyna were able to go with Logan, but I was left overcome
with anxiety for my little baby. As they
completed my extensive stitches all I could think about was the possibility I
may not see Logan alive again. I wanted
to jump up out of the bed and run to the NICU.
Seth soon came back to let me know Logan continued to be stable. Just a bit later I was able to join them in
the NICU where I saw my sweet baby hooked up to various devices. As we had done research on the possible
outcomes I was prepared for what I may see in the NICU but it was still hard to
see Logan that way. I was so grateful to
see he was alive and deeply thankful to be his mom.
Labels:
anophthalmia,
Birth,
blind,
Cleft Lip,
Cleft Palate,
delivery,
hospital,
labor,
microthalmia,
NICU
You're Nearly Half Way There...Now Go Home
Due to his large size and breech position Logan was
scheduled for a C-Section on his Daddy’s birthday. However, he decided to pick his own day and came
a bit earlier. Two days prior to his
birth I was having fairly good contractions and I was up until past three in
the morning. It was not only the
contractions that were keeping me up but also the feeling that Logan was
bucking his legs like a rabbit when trying to escape. The last thing I remember before dozing off
is my stomach looking strangely wide and warped as though Logan was squeezed in
sideways.
In the morning my stomach looked back to the way it had for a
while. I felt pretty confident that
Logan had been working hard to turn head down, but I wasn’t certain if after
making it halfway he succeeded or gave up and turned back upright. I called the doctor, sharing that I though he
may have turned and they were able to do a quick sonogram to check. Luckily he had turned so I could now have a
vaginal birth. I felt pretty sure this
was good news, but the thought of a ten pound baby was still quite daunting.
I began having painful contractions again that day so we headed to the hospital, again. They checked me and I
was dilated four centimeters and was having regular contractions. Sounded like a prime time for a baby to me
but THEY SENT ME HOME. I was pretty pissed at this because of how
far along things seemed to be and my apparent challenge in determining if I was
in true labor. Oh, and yeah, I was a
high risk pregnancy as well. Sounded
like a grand idea to send me home!
The next day I continued having bad contractions and called my
clinic. They had me come in to the
clinic and hooked me up to the monitors.
As I had been for seven weeks, I was showing labor contractions but
since I had remained at four centimeters they told me to go home and wait until
the pain was just a bit more and then go to the hospital. I went home and did my best to rest, pretty
confident that this was it. I soon had
contractions so bad they woke me from my nap and we went to the hospital. I was still at four centimeters and ready to
strangle the first person who told me I was going home, but they told me my own
doctor was the one at the hospital tonight and he wanted me to be
admitted. I was so relieved and found
the hospital bracelet to be the loveliest piece of jewelry I had worn in quite
some time.
Reyna chilling in the room we were finally granted. She was totally prepared to throw things on my behalf if we didn't get it immediately. |
Friday, May 18, 2012
Not Quite Right
Remarkably over the next few months I was able to stay
fairly calm. At times I would be
overwhelmed with worry, but usually I could take myself back to the
sonogram. I would remember how they saw
distinct fingers, a normal looking heart, two hemispheres in his brain, and
several other promising “normal” features.
I was also able to find comfort in doing all I could to prepare. We even met with one of the three possible
doctors who could perform his cleft repair while I was still pregnant. He thought this odd and mentioned (more than
once) that it was not typical to meet with parents prior to surgery. We were
very glad we did because we were not pleased with this doctor due to his
seemingly arrogant attitude. Even though
he seemed quite capable we requested a switch due to this experience. We were able to choose a new surgeon prior to
his birth and are so grateful for the choice we made. His plastic surgeon is amazing! We also learned about various treatment
options, long term and immediate needs, and specialized feeding tools. All of this helped us feel more prepared.
We had two additional, high resolution 3D sonograms with the
perinatologist and things continued to look promising. The two follow up sonograms were completed
much faster but I pushed for them to look closer. They obliged slightly, but mostly brushed off
my requests saying that the first sonogram checked Logan well and they are
still seeing normal development. They
looked at the major features, but the details weren’t as closely examined. At these sonograms Logan’s size was also
beginning to be predicted. It looked as
though he would be quite large with a predicted weight of around ten
pounds. My stomach measurements were
also measuring on the larger side. This
was a bit odd because Reyna was only six pounds, thirteen ounces but larger
babies had been born on Seth’s side of the family so it seemed possible. There was also of course the consideration I
had in my own mind that the original due date was more accurate which would
throw off the size for gestation a bit.
My Extra Big Tummy |
In addition to Logan’s larger size, there began to be some
other oddities that started to increase my worry again. Around thirty weeks I began to have regular
contractions. These were not the
practice contractions that are normal.
These were typically three to five minutes apart and every time they
hooked me up the monitor I appeared to be in full labor. Thankfully however, when they would check
internally I would show very little progression toward labor. Twice I was given medication to prevent
preterm labor but as little was changing I was able to continue with my daily
tasks and work. Many of the contractions
would be uncomfortable but not terrible painful. However, at times they were identical to my
experience of going into labor with Reyna so it was very challenging to
determine when I needed to go into the hospital. We visited several times before the real
thing and I was getting very frustrated by the thought of not being sure when
it was “real.” I was embarrassed to keep
going in when it wasn’t needed, but at the same time worried I would ignore
true labor.
In addition to these early contractions Logan remained in
breech position up until two days before labor.
I know that this can be typical, especially with a larger baby, but for
me it just felt like one more thing that was not quite right in the
pregnancy. The (mostly) internal calm I
was able to maintain earlier in the pregnancy began to break down at this
point. I think it was partly due to the
delivery approaching and partly due to the instinctual feeling things weren’t
quite right. On the surface I was able
to remain functional and calm, but inside I was full of worry. Despite this worry, I was greatly looking
forward to meeting little Logan.
Reyna enjoying a precious moment with Daddy as Logan's arrival approached |
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