Update Thank You

Thank you so very much for your beautiful prayers and comments!

Simeon did fine.

It was about an hour surgery

and about 2-3 hours in the recovery area.

 

It was odd and so very nice at the same time to actually

go home on the same day!

His eyes are very sensitive and draining a little blood

as is his nose, as the doctor sutured the stents into his nose.

 

So he did need to have the stents put in.

Eventually his eyes will not be watery all the time.

(when the stents come out within a year)

 

Prayers for all who prayed for my sweet boy, thank you!

 

 

 

 

Please Pray for Simeon!

Tuesday, sweet little Simeon will have another surgery.

This time it's considered minor, but I'm the mama,

and I say surgery is never "minor"!

 

He's had clogged tear ducts since birth.

He's having a nasolacrimal duct surgery to unclog his tear ducts.

He may need stents placed, which would mean an on the table decision

to drill through the bone.

 

I am praying specifically for a little miracle

(nothing is little with miracles either is it?)

Praying that he won't need the stents put in and he has a quick recovery
with no more red, watery eyes!

 

 

Thank you so very much for any prayers!



Update on Simeon

 Here's some cute toesies for you, and YES,

of course, I will kiss them for you!

 He's doing OK, he had a fussy, fussy week.

He's finally drinking out of his normal cups, 

as of tonite.

The first hardest part right now, 

is the arm bands

(we have blue shark ones too, from the last surgery)

They restrict him from putting anything into his mouth, 

like, oh, toys, crumbs, his fingers!

He's uncomfortable sleeping in them and

 is so happy when I take them off for a short time

but, he's quick, last week, he immediately put his finger in his nose, 

and blood gushed out (not good)

I hope it healed OK

We'll find out Friday (Good Friday)

at his Post Op check up

The second hardest part is the food.

He will be eating baby food type food for another 4 1/2 weeks.

He doesn't like baby food anymore.

(he eats a lot of  yogurt and pureed baked beans

 (I know, yum, huh?)

He wants crackers and cereal and, whole fruit pieces, veggies and bread

you know, real food! 

Thank you again for all your prayers!!

(not sure if I'll be back this week or not)

SO 

Have a Blessed Holy Week!  

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7 Quick Takes!

 I'm trying Jen's Quick takes again this week
(hope she doesn't mind it's actually Saturday, my days are goofed up this week)

1.

We have a new pope!  Pope Francis!

I do not know much about him, hoping he's conservative,

loving his humbleness, praying for him.

Not  understanding how some non Catholic friends who have lots of Catholic friends

can post negative things about Catholics getting a new Pope on Facebook.

Things like, "No matter who's pope, Jesus is still King" 

Yep He is.

But

 it does matter who is pope

The Catholic religion is the only religion that has remained 

100 % pro-life in every way

We have not backed down on abortion, contraceptives, euthanasia.

(and many other moral teachings)

Because we have a physical leader here to make sure, 

who has the Holy Spirit guiding him all the way.

This new pope comes in a long line of popes

click HERE

or HERE

To see how they all go back to Jesus, Who IS King, and Who 

made Peter the very first Pope.

I would be happy for you if you got a something new at your church.  

Why does it seem to upset you when we do?

We all have the same goal

HEAVEN!

2.

Here's Simeon on day one

about 5:30 am

He was happy and dancing and talking away, entertaining all the nurses!

 Here he is about 2 pm

It's hard to look at your baby like this and say how things are really going.

Because when you look at your baby like this, things are not going good.

Maybe the surgery has been successful,

 but you still will be up all night and day with a 

hurting, fussy, scared little baby, who you can do nothing for

except pray and be there for him.

(I won't show the close up of his face only, it's too sad to look at)

 3.

Day 2 (Wednesday) morning

his face is swollen but there is a slight smile here,

he's playing dice...we play a lot of Farkle and he loves to shake the dice.

This only lasted this one morning, then, 

all toys were thrown out of the crib

every time we tried to give him any

 So by that afternoon, we desperately needed to get out!

 Which was easier with helpers!

 4.

Day 3 no I.V.!!

(but it's still attached to his foot)

Here, he's holding the milk cup, but won't take a drink,

I caught him twice starting to take a drink,

 and once it got to his lips

he'd put it down.  Poor baby.

He loved the wagon rides!

(can't wait til summer)

 5.

Day 4 (Friday)

 We would walk to the end of the long hallway

to this family type room, I'd close the door, and let him play all around!

The hospital was full of very sick kids,

 so we didn't get to play in the playroom much

(and when we did, I forgot my camera!)

 6. HOME!!!

This is today!

Looking much better, his lip is still swollen a little.

I cringe every time I think of how they must have
 held his top lip up and open for the 

5 1/2 hour surgery.
(He has sores on the corners of his mouth from this)

And I think about how much we complain when we have a little canker sore in our mouths
He's happy when he has Motrin. 

7

Christine

has a new blog name and lots and lots of new posts up!

Yay Christine!

Thank you again for all the prayers!  

God bless you all! 
PS, had to laugh, I only said I needed a nap and a shower,
not that I'd get them!
(I did shower, though)    

Update

Simeon is sleeping now, so I'm updating quick, then I need to try to get some sleep too.
He is in quite a bit of pain.  His surgery lasted over 5  hours. He was in the surgery room from 7am til we were able to see  him in recovery around 1:45pm.    The doctor was able to completely close the "nose layer" and he's very happy with the mouth layer.  The layer in the mouth, was closed almost completely and all the way back, I guess his palate was quite long and the doctor was happy with this that he was able to go all the way back.  (I have no idea what he's talking about either) It's hard to understand, he explained the palate as a double layer, almost hamburger like layered surgery. 

Right now, the goal is to keep him as comfortable as possible. (which means morphine) He is not eating much yet, pretty much forced sips.  This should change during the day Wednesday as he gets his appetite back. 

His face is quite swollen, he looks at the arm braces like "What the heck are these things?" as he's crying. 

We thank you for your prayers, keep them coming!

I'll try to update Wednesday sometime...(it's 3am right now) It's impossible to post while he's awake. 

Please Pray for Simeon!

 Begging for prayers again!

Our sweet Sims is going in for his 4th surgery in 14 1/2 months

He's our hero

 Each time is just as hard as the last

We go through the same fears and worries and constant praying

 But this time, it's seeming to be a little harder for both Tom and I.

Little Simeon has a personality now, he's so fun and active, 

walking and getting into things constantly.

 Getting excited every time he sees us (melts a mama's heart every time)

Playing...he loves to play and read books

He loves to be held, if you are standing, no rocking or sitting allowed,

he will point where he wants you to walk to.

 How can you not smile when you say "No No!" when you see this face?

He's so used to everyone around,

  he doesn't even care when his toes are being kissed

while eating!

It feels  harder because we feel even more like we are almost 

betraying him.  Tricking him.  He goes in happy and 

comes out in such pain.

We will have to earn his trust again.

I tear up just typing this.

For the next few weeks, he will be afraid to be put down

He will not trust us.

And it breaks our hearts.

Come on over Google Readers, and see some great baby dancing!

Please ignore my loud voice and the Farkle playing in the background
(see more broken drawers here, covered with cardboard)

This picture shows his teeth good, except now he has a 5th one and is working on more.

Hard to imagine the doctors working in this small space for such a long time.

I get sick to my stomach when I think about it.

They are closing his palate tomorrow.

Surgery starts Tuesday, March 12th, at 7am 

(we need to be there at 5:30am)

The surgery will be minimum of 2 1/2 hours

They will cut 2 circles around the inside top of his mouth

Somehow it all closes...moves into place, all the parts are there, they just need help.

We will be at the hospital for 2 nights, coming home hopefully, Thursday some time.

Prayers are so very much appreciated!

They hold us up.

They help him, he's going to be something great when he grows up

(he already is)

Please pray for the doctors and nurses that will take care of Simeon
and that he heals quickly!

Please pray for our family, it's so hard for everyone in different ways.

My 6 year old has cried several times this past weekend, 

saying "I miss you already mama", breaks my heart.

 She has a stapled together book of blank papers, and every time she misses me,

she's going to color me a picture.

(it's already 1/2 full)

Thank you so much.

I pray for all of you too.

I can do that, our God is BIG

He knows who you all are!

 

Next Surgery Set!

 Oh, my little sweetie pie!

(Home photo session turned out pretty good, huh?--more on that later)

We met with the plastic surgeon today

Palate surgery is set for TUESDAY, MARCH 12TH!!

That's only 11 days from today!

 That means no more bottles!

No more food coming through his nose

(which is good)

No more bottles.

Did I already say that one?

I'm sad about it.

I rock him to sleep with a bottle every night

He's not a snuggler, it's the only time he snuggles in!

He gets a sippy cup (without the spill proof thingy)

during the day.

The palate has to be closed in order for speech to develop

Cleft babies need lots of speech therapy

(like Dada is "Raw Raw")

Click on the picture you can see how his teeth are coming in,

supposedly there are 2 more teeth in his premaxilla, 

who knows where they will come out!

Begging for prayers again, 

Please pray for my sweet baby, 

for a quick recovery 

for his doctors and all who will care for him

and that his mouth heals and the 

hole that is left is the size of a pin! 

(all bilateral cleft babies have a hole still in their roof of their mouth, but we can pray

for that hole to be very small.  The hope is that it will be 95 % closed.)

  

His First Step Caught on Tape

While doing "So Big!"

My little brave boy, who is afraid of nothing

(except doctors touching his face)

just out of the blue, took his first step!

I keep watching this and it makes me laugh every time!

I do not think the kid will actually walk

I think he will run

He's such a busy boy!

We are going to the doctor today for a 6 week check up-post kidney surgery

I'm nervous.

Please, could you spare an extra prayer for him and the mama?

We also need prayers, for his next surgery coming up

We meet with his plastic surgeon again the beginning of March

(we met with him last week)

He wants to do surgery end of March, first part of April

Which means his premaxilla, (that front part sticking out) 

needs to move quite a bit down and into his mouth in the right place.

His surgery will be on his palate.  Closing it.

He needs it done, and the doctors prefer doing it before 18 months, 

because it puts babies quite a bit behind in speech, without it done.

He'll then go from a bottle to a cup

and his food will no longer come out his nose!  (yay!)

Our prayer is for his premaxilla to move into place and for his surgery to be successful.

(you can see it has quite a bit to move yet)

I'll post another update as we get closer and we know more details

Thank you so very much for your precious prayers for my sweet baby!

***Update***
Simeon's appointment went great!  
He can now be off the antibiotic he's been on since July!! 
He does not need to see the kidney specialist for 6 months!

Thank you for your continued prayers, they are such a blessing!
 

Update

 On our way in, we left home at 4:45 am

 Happy baby waiting for surgery....

After surgery, resting, in a pain med sleep....

Pain will start tonite, with bladder spasms...not looking forward to that

Poor baby

Surgery went good though, we get to come home Thursday!

Thank you for your precious prayers, we appreciate them so and pray for all of you too!

God bless

Please Pray--Simeon's Surgery Tuesday

 Simeon's surgery is on Tuesday at 8am

(This time it's not a cranial/facial surgery)

This surgery is on his ureters, they are long and coiled and blocked.

The doctor will cut them and re-attach them to his bladder.

He has hydorneurphrosis in his kidneys, (fluid in his kidneys)

the left one being more severe than the right.

It's an easy thing to forget about, he's so happy and seems healthy on the outside

This, is supposed to be a "pretty common" surgery

maybe common to a Pediatric Urologist, but not to us!

He is also being circumcised,

 because of all the catheters he needs with all his surgeries

It's just better for less chance of infection and easier access.

 He had his pre-op appointment last week and is a hefty

19.13 pounds!

And he is no longer anemic!!

 I need to pack and get as much laundry done as I can today

 We will be in the hospital til at least Friday

I don't have a way to post updates 

til we get home, so please 

check the comments, I'll call Christine to let her know!

(I love jammie pictures!)

I'm a nervous wreck, on the verge of tears constantly and sick to my stomach

I know I won't sleep tonite so I'm offering it all up for my sweet Simeon

and their sweet Dominic, who will also be in surgery on Tuesday morning,

to revise his nose for better breathing.

Our God is an awesome God and can heal, guide and comfort these two babies

at the same time!!

Thank you so much for all your love and support!

We are Home!

 Here's Simeon before surgery

 6:30 in the morning, happy as can be!

 My super little boy, didn't even cry once before surgery!

 He did so good!

The surgeon was really happy with the results!

Simeon started eating around 5pm last night and 

ate about every hour or so after that, 

so

the doctor let us go home this morning!!

(shortest hospital stay for me ever!)

 Here is his nose and lip before surgery

(and cute little fuzzy red hair)

 Here he is right after surgery

his nostrils are closer together, as you can see in the green shirt picture,

his nose was quite wide and kind of flattened in the middle, 

now it's cute and little

I loved the way he looked before, but also  love his new nose!

HIs lip was also thinned and brought down, and now there is more of 

the part where you can put your tongue between your teeth and top lip

allowing it to move and hopefully push that front part down and into place

so in 6 mos he can have the palate surgery.

 He's doing super, 

he cannot crawl now, as he might bump his face and we have to really watch his arms 

so he doesn't bump his face, 

so this jumper helps him get out of our arms!! 

(he's talking right here)

He caught what the other kiddos have and is moving through our house,

a terrible sore throat and cough,

so, it seems he is in the most pain when he coughs, 

it hurts both his mouth and his throat, 

which is irritated from the cold and the breathing tubes they used during surgery

Poor baby, it's one of those "seal" sounding coughs, and 

every time he falls asleep, he starts coughing and crying

It's going to be a hard week ahead

We had the blessing of a wonderful surgeon,

an anethesiologist that had 6 kids of his own, one with a cleft palate, 

a nurse that comes from a family of 14 kids

(we election talked)
A good friend (Susie) who came over very early in the morning
to be with our sick kids all day,

and 

I finally got to meet Chris!

We know like 4 mutual people and they all told me to meet her!

She is the mother of 7 kiddos, (plus one in heaven)

and 4 of those kiddos are cleft kids!

Her words of advice have helped more than she will ever know!

Thank you for all your prayers, they mean the world to us, 

and we are forever grateful!

I'll post more pictures throughout the week, as the swelling goes down!

Surgery Thursday!

Google Readers come see a video of Simeon talking!

This video was taken during the girls' gymnastics

 I'm asking for prayers again for my sweet Simeon

I could tell you to go vote,

 but I know you have already done that, right?

Could you spare some prayers for this sweet little baby,

who is nothing but happy almost all the time, 

filling our house with baby talk, baby giggles and slobbery baby kisses?

I know most of you are already praying for him

(and did I tell you, he has the softest skin of any baby I've ever felt?)

He's crawling, and getting teeth, and 

doesn't have a clue

that Thursday he'll be in pain again, 

he'll need to learn how to suck again with his new lips, 

and how to eat, and smile.

He'll have to wear those arm braces and won't be able to put his fingers in his mouth

for a while.

He'll have to sleep on his back 

Oh, I can see as he gets older, each surgery is easier in the sense,

that I know kind of what to expect, 

yet

harder because I know what to expect

I feel as if we are tricking this naturally happy, sweet baby

I'm dreading that part where I walk back to the operation room and 

have to leave my baby with the doctors

and wait and wait and wait

til I can hold him again.

Lord, make me strong, help me through this.

We love you just the way you are sweet Simeon.

This is for your future, so you can eat and talk

and grow and do amazing things with your life!

(here's his first tooth, just popped through last week, 

this was taken-totally by accident,

while he was talking -in the video at the top

that tooth popped through the next day)

Click on the picture to see it better!

Thank you so much for your prayers

We appreciate it so very much!

I'll try to post pictures next week

We'll be in the hospital til Saturday for sure.

Please Pray! Surgery is Friday!

I've been a nervous wreck, but somehow, I've gotten to this day, 

the day before his surgery.

We all feel the same way,

We love him the way he is, the way God gave him to us, the way God made him.

Perfect.

In our eyes.

The kiddos all keep saying at different times how worried they are about him,

it's been a stressful week on all of us to say the least.

I tell them of the hundreds of people praying,

blog people, friends, family, neighbors, people from church,

prayer groups here and prayer groups of friends.

He is probably the most blessed little boy in the world and all will be fine.

They, and I have a sense of peace

with this thought.

Our priest came by yesterday and blessed Simeon

We called the Poor Clare Nuns and they are praying

His surgery is at 7:30 am Friday

We need to be there at 6 am,

he needs to have his last bottle by 3:30 am

The surgery is between 3-4 hours long.

He will be in overnight for sure, and 

will come home when he can eat (by bottle)

They don't allow cell phones in the hospital

I won't have time to post til I get home

So you will be in the dark til then.

Today

We are packing (Rosie is going to stay overnight with me in the hospital)

We are taking lots and lots of pictures of Simeon

We are taking lots of videos of him the way he is now

We are already missing his sweet little face, that we all love so much.

We are kissing his sweet little lips as they are now.

It's a sadness I can't describe,

 loving him the way he is now and not knowing what

he'll look like tomorrow.

And at the same time, we all know everything will be fine and he'll be beautiful.

Thank you for all your prayers and novenas and rosaries and Masses,

phone calls, letters, gifts and whatever I'm forgetting!

Our Lady of Lourdes, Pray for us.

Surgery

We met with Simeon's surgeon last Friday

Surgery will be the first week of May

He will be a little over 4 months, so he should be a good size

He's a little over 8 lbs right  now

The nurse in the surgeon's office said that cleft lip/palate's are very common,

so much so that they see 4 to 5 babies per month!

We will have surgery right here in our town (yay!)

He will be in at least overnight and be there til he's able to suck out of his bottle

He'll need to wear arm braces for 4 weeks, to prevent him from touching his face

His next surgery will be when he's about 12-14 months, 

that surgery will be on the roof of his mouth.

I'm OK with it being 2 months away yet.

That means I don't really have to think much about it til then.

like, not having him for that time he's in with the doctors.

That will be pure torture, pure torture I tell you.

Needing to keep him away from public places these last 2 months, 

(in an effort to prevent RSV, his mouth and nose are so open to the air)

We've been splitting up Mass.

I've done the grocery shopping without him.

(That's all I've done I guess...)

Every time I see another mama with her baby

I tear up.

It's heartbreaking for this mama 

to not be able to bring him with me

and I miss him so 

When I come back, I just want to hold him and hug and kiss him!

I just can't imagine handing him over to the doctors and 

the pure torture I'll be feeling in the waiting room.

Hopefully that answers some of your questions