Jordan is four days old today and
is continuing his fight for life in the NICU at Aomori Prefecture hospital in
Japan. I am so thankful that we have
already gotten this much time with our precious angel in our lives. He melts my heart when I look at him. His body is so tiny and fragile but his
spirit is strong. Since he is so
underdeveloped, he is connected to many tubes, hoses, gels, and sensors. Although it’s hard to see him like this, I
know that these things are helping him in his fight and providing support. I just hope that he is not in any pain during
this fight.
We received an update on his
condition. The doctors tried a low
steroid and hormone that was supposed to help his development mature faster so
that his body could be more prepared if he needs surgery and in order for the
treatments to work to close the PDA.
They only gave one dose of the steroids and it elevated his blood
pressure. It was determined that it
would be best to not give another dose and to go ahead and do the third round
of IND treatment to close the PDA. In
this treatment they inject a medicine into his body that should react with the
shunt and close the PDA. The past two
rounds of treatment have been ineffective.
The third round of treatment is a higher dose of the medicine. For his first two doses, he had a high level
of magnesium serum. This is because I
was put on magnesium treatment right before delivery. The magnesium can stop the effect that the
medicine is supposed to have on the PDA.
For his third dose of treatment, his level of magnesium has decreased
greatly. The doctors are hoping that
this will allow the third dose to have an effect on the PDA. If there is no effect, Jordan will have to
undergo open heart surgery. If there is
some effect but not enough to close the shunt, he will be able to wait and try
a fourth dose to close the shunt completely.
The reason that PDA is so stressful on the body is because his heart is
having difficulty separating the oxygen and non-oxygen blood. The shunt allows the blood to flow into a
circular pattern rather than providing a full flow pattern to the rest of the
body. Because of the PDA, Jordan’s
tissues are not receiving as much oxygenated blood as they should be. If the problem isn’t fixed soon, his tissues
such as kidneys, brain, intestines, etc could suffer.
I am praying very hard that God
would allow this third dose of treatment to work on Jordan’s heart. I want more than anything for my sweet boy to
make it out of this strong, healthy, active, and perfect. I am praying that Jordan can be a big light
for God and can be a living miracle to reach and touch so many people. I honestly feel so blessed that God has
chosen me to be this strong little boy’s mother. I don’t think I am deserving of such an
honor. I get to watch and see God’s work
through Jordan’s life on a daily basis.
Although I am only human, I was chosen for this honor and get to have a
front row seat at God’s awesome power. I
pray that someday I get to run around with this amazing little boy, and share
God’s story through him. I am so
thankful that I have Jacob by my side through everything. He has been such an amazing supporter. It is not every day that you will find a man
who is willing to take care of your most personal needs and still do so with
humble love and affection. I have had to
rely on Jacob in many ways the past few days and he has shown me how much he
truly loves me. I am so thankful that I
am able to share that type of love with him.
I know that God created him perfectly for me to compliment me and share
the journey of life.
My own condition is a lot
better. My blood pressures are still a
little high and I have been told that it can remain that way for a few weeks
after delivery. I am having a few issues
with congestion and had to do a chest xray today. I didn’t find out any results about the xray
but I am praying for good news. I have
been coughing a lot and having a few asthmatic issues at night. It hurts still to cough. I’m still on blood pressure meds and have
been getting less rest than I should.
All of these things to me seem like minor inconveniences in life. I start to complain about them but then I
feel so bad because my little boy is fighting so hard for his life and I am
complaining about coughing. My labs have
shown improvement and my liver condition is now good. The doctors do not think I will have any
lasting damage from the HELLP syndrome.
I get half of my staples out tomorrow.
I am a little nervous and I feel like such a baby. Jordan has to go through so much and I am
scared about the staples. Lord I just
lift this minor concern up to you now and I ask that you would calm my fears
and help me to look past my own comfort.
I miss Jason. I was just talking with him on the phone and
he seems to be doing well. He is such a
trooper and I know that although he is confused about what is happening, he
probably won’t remember the situation in the long run. I can’t help but think about how long this
actual journey is going to be. I become
overwhelmed with the crazy amounts of things that I know Jordan is going to
have to overcome to lead a normal and healthy life. I wish that I could have fixed my body so
that he could develop more. I have no
idea what the future is going to entail and the lifestyle we are going to
have. I realize that I don’t have to
know the details about the big picture though.
I only have to deal with things day by day as I am handed them and let
God handle the worry about tomorrow and the future. Lord I ask that you would take away my fears
and worry. I ask that you would help me
to learn to rely on you minute by minute.
I know that we are in Japan right
now for this very purpose. I honestly
believe that God has put us through the trials of the past two years so that we
were prepared for this moment. Most of
the hospitals will not even try to save a baby if they are born before 24 weeks
because they are just too premature.
This hospital has done 4 previous similar surgeries on babies the same
gestational age as Jordan. The doctors
are very knowledgeable and have been doing their best to be sure that we
understand what is going on and all the risk factors involved. I really appreciate that they give us the
news straight. They don’t sugar coat the
process or try to give us false hope.
They tell us about the circumstances involved and share with us the risk
factors and complications along the way.
We have been through so much while
living in Japan with separations, inconveniences, long hours, etc. All of these things have been preparing us
for this moment in our lives. The
ability to have the strength to not fall apart comes from God and God is blessing
us with this ability.
Although our situation in the
hospital is crazy, we have not let it rob us of joy. We still laugh, cry, make jokes, and love
each day. Some of the things about being
in a Japanese hospital are very different compared to what American’s would
think is normal. Jacob had to have
special permission to stay with me at the hospital because normally husbands
are only allowed during visiting hours.
Since I have recovered so much, he was told yesterday that he can no
longer stay with me. We were bummed but
we figure it would be better for Jason to have a stable routine for bed
time. We can’t shake up our lives so
much to cause instability for Jason. We
still have to think about him and his needs in this process. Both of my boys bring so much joy to my
heart.
The food in the Japanese hospital
is questionable. They eat some
interesting things that we are not used to in America. I have tasted a few things but others I just
leave alone. At first I was only allowed
to have a liquid diet. The nurses and
doctors explained to me that my internal organs were still sleeping from the
anesthesia so I could not bombard them with real food yet until they wake
up. We all got a pretty good giggle from
that explanation. The Japanese nurses have
been trying so hard to keep up with communication and my comfort. The language difference is interesting. I admit that many of them have way more
English skills compared to my Japanese.
Some of the funny conversations we have will always be memories. One nurse has made my stay extra
special. She speaks very good English
and tries so hard to help me out. All of
the paperwork is in Japanese including my schedule. It was explained to me in English but if I
forget anything I would not be able to read the schedule and check. This nurse actually took her own personal
time to type out the schedule for me in English so that I would have a
copy. She has been a blessing to me for
my stay.
We have several new “family”
members through this situation. Some of
the people that stepped up right from the beginning to help us out have taken
special places in our hearts. It is
sometimes hard not having our parents here with us during this time but our
church family has surrounded us in love and taken care of our needs without
question.
Something I am going to need to
overcome is the feeling of it being not fair.
I struggle with this often. When
I look at facebook and see the posts of my friends I feel as if they are wrong
to complain about such a little thing while my child is fighting for his
life. I have to take a step back and
tell myself that I did the same just 5 short…well long for us…days ago. Life still continues and goes on even when
our lives have seemed to come to a halt.
I feel like we have been doing this process for months rather than
days. I know that all of this will come
with time and maturity. I have started doing the purpose driven life
study. I ask that God would use this
time to help me grow, reflect, and excel in my walk. I need you Jesus to be with me more than
ever. I need to hand over all control to
you and let you guide.
Lord, I wanted to pray today for my
sweet miracle baby. I am so honored and
blessed that you have chosen me to be his mother; to carry this burden. I ask that you would give me strength to do
this job in a humble manor. It is not
about me but about your plans and will for my life and the life of my family. I ask that you would be with Jordan as he is
fighting and place your strength in his body.
I ask that you would allow the medication to take effect on his heart
and close up the shunt. I ask that you
would then continue to develop his strength, tissues, organs, processes, and
spirit. He already has a fighting spirit
and I pray that you would infuse him with your strength and be his strength for
the imperfect human parts. I ask that
your will be done in his life and that you would bless him with a testimony
that will reach many for your will. I
ask that you be with Jacob and I as we take things day by day. Help us to support each other, listen to one
another, and pray for each other. Help
us both to grow in your grace through Jordan’s life. Be with Jason as well and help him to
understand that mommy and daddy love him so very much. Help him to not be overwhelmed by the
changes. Lord I ask that you would help
us all to rest so that we may be strong in our thinking and decisions for the
next day. We give over the reins of our lives
to you and ask that you would guide us in your perfect path. Thank you so much for the many blessings you
have already given us. In your name I
pray, Amen.
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