she's more than the spot on her face

today we had another hemangioma appointment

and as excited as I was to post about her progress

 a part of me was very annoyed. 

 more than I would like to admit people ask about her spot

 how's it doing 

how big is it now 

and so on..... 

while I appreciate the concern

 a part of me wants to yell.... 

"there is more to her than the spot!!" 

we've had a rough week filled with appointments

 that have all turned out fine 

so a part of my reaction could be from high level of anxiety 

based around these appointments with many specialist

 however, 

i said i was going to be honest

 and my honest reaction 

when i sat down and write this post 

was 

anger

 frustration

 and sadness

 my daughter is more than the spot on her face 

she's starting to coo and laugh 

 she's fussy at night 

which as much as I hate these moments 

they are her 

and i love that

 she's getting into a routine

 which I am thankful for

 so today instead if posting specifics about her face

 because frankly i am tired talking about it

 i am simply going to post

 that we are so thankful for everyone's concern

 the hemangioma is still there,

 it's improving, 

and she is as wonderful as ever

one week down.....

here we are at the end of week one

of 

treatment for miss emerson's 

hemangioma.

this is the hemangioma at the beginning of the treatment

honestly 

i was expecting much change

since

she was only on 1/2 strength dosage

but

we did see change!!!

last week's measurements

were

2x2.5cm

and 

.8cm deep

this week 

the hemangioma looks like this

changes we've noticed

1) it looks more defined

2) the scabbing is starting to come off

3)less spidering

and the measurements are...

(drum roll please!)

2x2.2 cm

(shrunk .3 cm)

and

.6 cm deep

(shorter by .2 cm)

YAY!!

now we are on a full dosage of propranolol

and 

will go back to the doctor next week

for

a weight check

and 

more measurements!

she just found out she weighs a whopping 12 lbs.

she's my wide eyed beauty!

hemangioma treatment week one!!

yesterday we started treatment on

miss emmi's hemangioma

treatment for now 

will consist of 

twice a day dose of 

{propranolol}

weekly weight checks 

and 

blood sugar checks

weight checks because

the dosage is based on weight

blood sugar checks

because

 a major side effect is low blood sugar

which is a big no no in an infant

when can we expect to see results???

between 3 weeks

and

14 months

wow 

that's a time frame

already though 

after 3 treatments

we've seen some minor changes

one being the color of the hemangioma

the second 

being less spidering around the hemangioma

so i figure we can track the changes together.

here we are at week one

 

it looks painful

but it isn't

 the medicine made specially for her

 

they say it's cherry flavor!! 

yum! 

and a quick review of the growth of her hemangioma

here she is at one month

 

it's still flat here and we were still under the impression 

it was from the tape used on the ng tube

and here is two months

 

what a change!!!

but that is very characteristic of an hemangioma

they just bloom over night practically

so weekly we will watch it shrink

and notice the changes together

but 

she is NOT in pain

and 

we are very optimistic that it will heal quickly 

and with minimal scarring!

looking forward to next week's pictures

measurements for this week are 2x2.5 cm and 1 cm deep!

any wages on next week's measurements??

 

but she's a preemie...

i've debated writing this post for some time

but

i've always said i'd be an open book

and 

an open book i will be

i'm going to try and streamline this post

but it's a very difficult

post 

and composed of many aspects

so bear with me if i take a left turn somewhere

i promise to try and make some sense

let me precede this post with this thought

i was never diagnosed with 
{post partum depression}

nor do i think i had it

and i don't want to make light of it

post partum depression is a very serious illness

and 

those who think they are suffering from it should seek medical attention

before i ever had emerson

a good friend warned me about 

"baby blues"

she explained they last about two weeks 

and

you cry for no reason at all

it's just hormones getting adjusted

this was the best pregnancy advice i received

i didn't realize it at the time 

but 

when the "baby blues" hit me

i was so thankful i knew what was going on with my self

emerson was 7 weeks early

some may say

"that's not that premature"

(in fact i have been told that)

but

to those i respond

"whether she was one week early or 10 weeks she spent time in the nicu which was the scariest part of her birth"

then the follow up appointments occur

and with each appointment

i am reminded by some medial professional

"well remember she is premature"

a part of me wants to yell 

"um yea i know i was there"

but i bite my tongue

and just nod

and because she was premature

you are informed of all the risks she is subjected to

like developmental delays

cognitive delays

etc

and at aviano

they send a physical therapist out

once a month

to make sure your premature baby

is 

developing normally

for me 

that means once a month

i am reminded that i failed to carry full term

there is certain guilt that comes with a premature baby

(at least i experienced a guilt)

my only job

was to carry this wonderful creature for 40 weeks

(or at least 36)

and i felt like a failure

and when you are reminded of it constantly

you can't help but feel the guilt over and over and over again

and i can't speak for parents of term babies

maybe they experience a guilt as well

when something goes wrong

or the doc observes something abnormal

but for me

even the simplest thing as a weight check

became a guilt fest 

even though she's gaining so well

so for those who are pregnant 

i warn you about baby blues

and 

if/when you find yourself crying 

because you still can't eat gelato

(yes i cried because gelato still made me sick)

or

your husband didn't put the trash bag in the trash can just the right way

know that this too shall pass

also

for those who have preemies 

or babies in the nicu 

hang in there

talk to someone about any guilt you have

try to find a support system with other parents in the nicu

we did

even though it was an italian hospital 

there were two other american families

so we had a nice support system

and

love on your baby!

me lovin' on my baby!!

what's that on her face?!?!?: a lesson in infant dermatology

there isn't a day that goes by

that someone doesn't ask

"what's that on her face?"

a part of me wants to reply

"what on her face? i don't see anything"

then the nice person

the not rude person

wants to take the opportunity to educate

and inform

the questioning person 

of her birthmark

known as a hemangioma

hemangiomas

are birthmarks

that are more likely 

to occur in

caucasian

females

who are premature

hello emerson!

at birth they usually aren't visible

but about 2-4 weeks after birth they become apparent

which in her case

we thought it was from the tape of the ng tube

but within a week or so after that it became bigger

and a week after that even bigger

and today it's even bigger

(happy two months sweetie!!!)

but they

tell me this is normal

and that the birthmark will go away on its own

however

there are 

treatments

ranging from

beta blockers

laser surgery

and 

surgical removal

because her spot

is 

ulcerated

and

close to her eye

more than likely we will treat it 

we meet with the dermatologist

this week

to determine a treatment plan

but

her spot will

most likely

go away

with or without treatment

so there is your lesson in infant dermatology!

happy monday

and

happy 2 months to our sweet emmi!

do you breast feed?????

welcome to aviano!

oh you have a baby!

so do you breast feed??

it's a question i have encountered

more than

"how old is your baby"

here at aviano

your nursing cover 

is more in style

than a louis vuitton bag

step one

get a really cool nursing cover

thanks mimi!

step two

have a baby 

(maybe this should be step one but the nursing cover is just really a cool accessory!)

got the baby

isn't she a doll???

now bring out the boob!!!

wait!

my baby is a preemie!

wait!

the nicu wouldn't let me breast feed

oh no!!!!

maybe i can just wear the really cool nursing cover and hide her underneath

maybe no one will notice

but here at aviano

where breast feeding is the standard

that just won't happen

the lactation consultant

swarms in on me

and

waves her wand!

don't get me wrong

i love my consultant!

she's awesome

she goes above and beyond 

what i would do

and 

she never gave up on me

offering different ideas

suggestions

and 

did i mention she breastfed her adopted child!!

yes her adopted child

so i figure if she can do it

so can i!

problem number one:

baby screams at breast...

oh no..

enter laction consultant with wand in hand and

poof!

i can proudly say 

that although it took two weeks

two very long weeks

my baby no longer screams at the breast

success number one!

problem number two:

i don't have enough milk

geeze!

this breast feeding thing can be tiresome

here comes the lactation consultant with her wand!!

and 

domperidone

 fenugreek

and 

the pump

now

enter a regimented feeding plan

breast,

pump,

bottle

repeat

breast,

pump,

 bottle,

repeat.....

maybe one day we will eliminate the bottle 

but for now

it works

my baby is growing like a weed

impressing the docs with her growth

and

i can proudly answer

yes i breast feed

it wasn't easy getting to this answer

i know we aren't at a whole hearted yes

and some people would argue i'm not breast feeding 

because she still gets a bottle

but to those negative nancy's

i say hush!

there have been moments

where i wanted to give up

but

with the support of my husband

my mimi

my lactation consultant

and

fellow moms here at aviano

and back in oklahoma

emerson and i 

can be in style here 

at aviano

wearing a really cool nursing cover!

emerson's story.....giving birth in an italian hospital

Where to start? 
Well let’s start at the beginning of Thursday February 23 
at about 6:30 in the morning.  
I got out of bed like any normal day, 
fed the dogs 
then went to the bathroom. 
I still had some time before my NST
 (non-stress test) 
so I decided to climb back in bed. 
I was supposed to be on modified bed rest ya know. 
Once back in bed I had the strangest sensation, 
like I wet my pants. 
Now don’t get me wrong, 
throughout a pregnancy 
one may question the efficiency of their bladder 
but I had never wet myself! 
I got back up, went back to the bathroom, 
decided to shower 
and once I got out of the shower 
I realized there was no way I had this much urine in my body. 
I woke up the hubby and tried to remain calm, 
but once the words, “I think my water broke” came out of my mouth I immediately started to cry. 
This wasn’t supposed to happen not yet.
 I was only 33 weeks. 
He was calm and said, “Call the doctor” so I did.  
When the nurse came on the phone I told her, 
“I think my water broke because there is no way I have this much urine in my body.” 
She laughed and told me to come on in so away we went to Aviano AB Clinic.  By the time we got there I had soaked through 
1 pair of underwear, 
a pair of Ken’s boxers 
(don’t ask me, during my thought process I thought his boxers would provide more absorption than another pair of underwear), 
a pair of pants, 
and a towel.  
I begged Kenneth to walk behind me going into the clinic 
because I didn’t want anyone to think I wet my pants.  
The staff at Aviano Labor and Delivery was awesome and so caring, 
explaining to me that yes my water had broken and I was in labor.  
According to the monitor I was having pretty strong contractions 
a minute to two apart. 
I didn’t feel anything honestly. 
I was still in shock over how much water came out of my body. 
I was pooling at the foot of the bed, they had to bring in a mop! (TMI?)
 Since Aviano isn’t prepared to handle a premature baby 
I was informed that I was being transported to Pordenone.  
This is like hearing your 5 star resort that you had planned on staying at overbooked 
and now you were forced to stay in the hostel next door.
 So the ambulance came and off I went.  
Within in 5 ½ hours of my water breaking Emerson was here via emergency C-section (she was breech).  
So what’s the big deal about delivering at Pordenone? 
First 
was Kenneth was not in the room with me when I delivered.  
He was not allowed in there.
 I tried to just breathe and stay strong throughout the surgery 
but honestly I just wanted my husband there. 
Imagine being strapped to a bed, can’t feel your legs, and everyone is talking in a language you really don’t understand.  
Then the second horror came, I
 wasn’t allowed to see her for 24 hours. 
Since she was in the NICU they couldn't bring her to me
and they didn't want me in a wheel chair
or walking
due to my C-Section.
Talk about being set up for postpartum depression! 
Rip the baby out of my belly, 
stick me in a 10x10 room without a TV 
(TV’s aren’t in the Pordenone hospital), 
and tell me I can’t see my premature child.  
Thankfully they bent the visiting hours so Kenneth could see more of her. 
 I will discuss visiting hours later.  
Then the hunger striked. 
I hadn’t eaten since the night before.  
Wonderful friends brought food, snacks, etc 
only for the Italian nurse to tell me “No mangi domani” 
(No eating until tomorrow).
 Oh goodness…. 
Can’t see my child, 
can’t eat, 
no source of entertainment….
 I was a hot mess.  
A calm hot mess but internally I was a mess.  
Kenneth brought up an overnight bag for me
 including a computer with movies and my ipad.  
However, he couldn’t stay the night 
so at 9pm prompt 
the nurse asked him to leave. 
Another horror: 
Pain control

Pain control in an Italian hospital consisted of IV drip of the equivalent to Motrin 
and the next day 
when the IV came out 
the equivalent to Tylenol.  
But when they finally told me I could walk the next day, 
I did,
 despite the pain.  
I do believe the lack of narcotics, 
and me having to face my pain, 
helped me recover faster.  
Either that or I have a higher tolerance of pain than I give myself credit for.

The next morning!
 Sweet Jesus I can eat!!! 
Imagine my thoughts when they brought me this for breakfast. 
A bowel of hot tea…..  
And for the next day and a half
I was on a liquid diet 
so chicken soup for lunch and dinner 
and tea for breakfast.  
I was about to die of starvation.  
Then they came and told me I could see my daughter 
but it was only 11:30 
so Kenneth couldn’t go see her.  
Remember I mentioned visiting hours… 
yes, Kenneth was only allowed to see her from 12-2 and 7-9.  
I didn’t want to see her by myself. 
I feared I wouldn’t recognize her (I had only seen pictures) 
and I wouldn’t be able to handle seeing her in a NICU. 
 I was very much blaming myself for her preterm delivery. 
  I felt cheated out of so many pregnancy events 
and feared for her health and well being. 
So I cried, and told the nurses I wouldn’t go without my husband
 and how dare they try to break up the family unit, 
why didn’t they respect the family unit, 
didn’t they understand the importance of a father in a child’s life, 
pretty much my syllabus from my Family Therapy class from grad school.  
Gotta love hormones.  
At noon, my husband and I went as a family to see our daughter. 
It was a great moment.  
We didn’t get to hold her until that evening 
but that day 
despite the rocky beginning 
was wonderful.

Three days later I was released.  
Leaving her there was so hard. 
Another pregnancy dream of going home baby in tote was shattered. 
But we came back every day twice to see her 
and when I felt comfortable driving 
I would go in the morning to bathe her 
so I saw her three times a day.   
These were good days. 

Our time was getting longer and longer in the NICU 
and we were getting more impatient to bring her home. 
She had been there 10 days 
when she was back at her birth weight 
and eating all the required feedings.  
They still were not showing any signs of discharging her.  
However, after we showed our ‘angry American” side, 
me more so than my husband, 
on day 15 she was discharged.  
We’ve had her home two days now,
 and looking back on my Italian delivery, 
I realize three things, 
1) they do care for their patients which ultimately is the most important things 
2) my italian grew by leaps and bounds the 15 days I was forced to use it
 and 
3) Americans are very spoiled by their hospitals
 (and I miss being spoiled!)

****

Pictures of an Italian hospital 
First there are no "birthing suites" 
typically there are three women to a room,
 however, 
since I was American 
they put me in the "American" room
(the only private room)
 
my 10x10 room
and there wasn't a bathroom
just a sink and a locker

If I wanted to use the bathroom
I had to walk down the hall
to the community bathroom and shower

 

 

please don't ever accuse me 

of not emersing myself in Italian culture

this was pure immersion!  

and since my food was tea

 wonderful friends made sure we had real food

well snacks

when I was finally allowed to eat

 

I swear the Italian nurse wanted to take my food away!

she kept looking at it......

it's italian tradition to decorate the door with appropriate color bows, ribbon etc 

of the new baby

here is my decoration thanks to kenneth's aunt, uncle and cousin!

finally a look down my hallway

 

 

 and most importantly

our emerson

going home!!