About a month ago we had the boys 9 month appointments. At the
appointment we talked about the usual song and dance, Linden being small for
his gestational age and how the specialist said he is hopeful he will catch up,
etc.
The boys had been sick with a cold for most of end of August
to mid September, the doctor checked their ears and found fluid in their ears,
so he put them on some antibiotics. They hadn't been really talking lots so he was
worried that with the fluid in their ears they couldn't hear properly and concerned
that it would delay their speech development. He wanted us to come in 6 weeks
later to check if there was fluid still and if there was then he would send us
to OU Children's in OKC to get tubes in their ears (He felts like we should go
to Oklahoma city because the boys ear canals are really small- a preemie
thing). During the meeting I could see the look of fear on Brad's face, he
started asking concerned questions about the tubes. I found out he was afraid
that they would have huge tubes sticking out of their ears... haha. I wasn't
worried because i knew it was pretty common in kids, and later I found out that
Brad himself had tubes in his ears when
he was a baby.
The pediatrician then looked at Nolan's back. for those of
you whom don't know Nolan and Linden have bumps in their spines. He did an x
ray at the beginning of summer and found there was no tumor or scoliosis. He
said he had never seen a curvature in a spine like that before but he wasn't
too concerned as babies spines are still forming until they are 2 so he was
hoping that it would straighten out as they develop. At the 9 month appointment
we showed him his back again and he said he wasn't too concerned and had
thought about sending us to a specialist but decided against it as they wouldn't
operate on him or give him a brace because he was so young and it was still
developing.
He then set up an appointment to see a nutritionist- I guess
to make sure that i was feeding Linden enough. And another appointment with the
physical therapist for their torticollus.
Fast forward two weeks later, the sooner start lady is impressed
with the boys development. they are both cruising and on track, if not ahead developmentally.
Nolan's bump on his back appears to be getting worse so I ask the soonerstart
lady and she agrees and encourages me that I need to get him into a specialist.
I still hadn't received the first referrals I had needed for the boys so I
started calling the lady who sets up referrals and leaving messages.
Another two weeks past and I have called several times more and
still have not received even a call back, people have been commenting on
Nolan's more and more, just adding to my concern. So I go super mom on the
warren clinic. I called their pediatricians nurse and say I demand to get a referral
to the specialist for Nolan's back and I need those referrals for the physical
therapist and nutritionist (it has been a month by now just to get a referral!!)
That day I receive a call who makes the referral, she apologized
to me profusely. Apparently the boys paperwork for the referrals got lost. I
could tell the lady was sorry, she had bumped them up to the top of her
priority list and had all their appointments set up within an hour of talking
to me.
Fast forward to today, we had the nutritionist and physical
therapist appointments in Stillwater (about 45 mins away). The nutritionist
appointment went well, she reassured me that what I was feeding and the amount I
was feeding was all good. It made me feel better that Linden is not small
because of anything i am doing wrong. I already feel like i am feeding them all
the time, at least every 2 hours... I was thinking if this isn't enough food I don't
know what to do!
We then went right from meeting the nutritionist at the
hospital to the physical therapist. This meeting was 2 hours long. She checked
out the boys and said that they couldn't look far enough on one side and their heads
were flat on one side. The torticollus was starting to effect their skulls and hadn't
effected their vision yet. She told us that their torticollus was pretty severe
and that we needed to get better about doing the stretches daily. If we didn't
it would start to effect their cranium, vision and they would need surgery to
fix their necks. We then did the stretches in the room and the boys screamed
and squirmed, and had baby melt downs. It is soo difficult to watch and listen
to, never mind to stretch them myself. The physical therapist then told us that
we needed to come in twice a week in addition to stretching them out at home.
The physical therapist is in Stillwater and being 45 minutes away from Ponca with gas and all it is just not feasible. So we are currently looking into going to
a physical therapist in Ponca twice a week, we think we may have one set up,
just need the doctors orders sent. But we have an appointment at the physical
therapist in Ponca on Monday. So we get to go through this all over again Monday.
Brad and I both left feeling utterly defeated and
emotionally spent. He told me when the therapist was talking he flashed back to
the first two months of their life and how horrible it was. I am just sick of doctors
appointments and the boys having what seems like a never ending list of medical
problems. It seems like the list just gets longer and longer. Here is a sample
of our upcoming scheduled appointments:
·
This Monday- soonerstart meeting in the monring
then going to the physical therapist here in Ponca .
·
Thursday the boys are meeting with their pediatrician
to check the fluid in their ears
·
Every month to the pediatrician to get the RSV
shot starting in November
·
Twice a week, every week to the physical
therapist
·
Every other week meeting with soonerstart
·
November 2nd to OU Childrens in OKC to the
specialist for Nolans back
·
February to OU Childrnes in OKC to the growth
specialist for Linden
With the physical therapy twice a week, sooner start and
other appointments this means every week we will have 2 and sometimes up to 4
appointments... It's just overwhelming. A couple of weeks ago I came to the realization
in the boys short life here they have already been poked, had blood drawn,
hospital stays, seen the doctor and specialists more times than Brad and I
combined. I had read a couple of weeks ago that post traumatic stress syndrome
from the NICU takes months to heal from, and if your babies have ongoing
medical concerns it can take even longer. I think I am there, I am still
healing and still dealing with having preemies with medical issues.
Yes, my boys are healthy and could be way worse. But they
are little guys who have a lot of medical problems and this mommy sometimes
just has moments where it all takes a toll and she just needs a good cry and a
why my boys pity party. That is where I am at right at this moment.
On top of it all Brad and I are missing home terribly. I had
thought that having kids would make us miss home and family less because we
have our own little family here, but on the contrary it makes me miss my family
more than ever. The only people who have met the boys is Brad's Mom and Dad.
The boys will be a year in two months, and it breaks my heart that no one else
in the family have met the boys in person. We were planning on visiting BC at
the end of November but it seems like our Visas are going to take a long time
to get approved once again. If you remember two years ago we renewed our visas
for another two years and the paper work took 6 months to get approved (it
should have only taken 3 months tops). During this stage we are not allowed to
leave the country, and last time that prevented us from going home during Christmas,
so brad and I sadly spent our first Christmas alone. Then last Christmas wasn't
much of an improvement as the boys were in the NICU and we were stuck in OKC
sad over my babies being sick and in the hospital.
We sent in the paper work for this round back in July, our
lawyer said the first stage should only take a month to get approved (there are
two stages total to getting approval for our green cards). Today the first stage
has still not been approved. So I am not hopeful in our plans to go home in
November, in fact I am starting to come to terms with another Christmas of us
being stranded here and our family not being together, this will make Christmas
number 3 apart. Mom and Dad have already said they would come down for Christmas
if we cannot go up, but Brad's brother and sister in law may not be able to
come down due to their work. So It is all unknown and up in the air when the
boys will ever get to meet their family.
I love our jobs, I love what we do, I love Oklahoma and where
we live, but I am just homesick and feeling stuck. Living so far away from
family is hard, but what makes it bearable is the ability to visit family every
once in awhile. It has been almost 2 years since we have seen any family other
then mom and dad (actually I was just pregnant at the time), so a visit is
overdue and with the boys leaving the baby stage, turning 1 and heading into
the toddler stage it makes it that much more urgent as they are only little
once but my family has to miss it due to paperwork. It was one thing last time
when these restrictions effected Brad and I but now they have effect my kids
ability to even meet their family. The sacrifice of living so far away from our
family is starting to take an emotional toll on me, especially when the option
to see my family when it is much needed is taken away from me and there is no
timeline on when those restrictions will be lifted.
All that to say
prayers would be appreciated. Pray that our green cards get approved and fast. And
please pray that the boys are fully healed and so healthy that we only have to
do the checkups like any other healthy kid. The boys are twice the poop, twice the fun, twice the medical problems and twice the worries. So this mommy needs twice the prayer!
