Category Archives: Cleft lip

Post Surgery.

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While we were in the hospital I decided to write down what I was feeling at the time, so that I could remember it forever.

Here is what I wrote.

Jan 12, 2012

Today is Arlo’s surgery

—–*–*——*——-

We came into the city last night, stayed at a hotel instead of getting up at the butt crack of dawn.

We woke up at 5:30

I hate mornings.

Especially today.

 

We got to Children’s at 6.

      Registered. Got coffee and waited.

We  went to day surgery.

     Arlo screamed. He was so hungry. He hadn’t eaten since 11:30 last night

I made the decision to quit pumping. It was a hard agonizing decision. 

I am in the process of weaning. It’s so much harder to wean from pumping,

than it is to wean from nursing.

At 7:50 I handed Ari over to the surgeons nurse. He was sleeping. I kissed him and told him that I loved him.

Rich kissed him goodbye.

Then the nurse and my baby walked away.

I held in my tears. I knew that once I started, it would be hard to stop.

I would cry.

At 11:30 the surgeon came and talked to us.

He told us that Arlo had done splendid. That it had been an easy fix.

Now all we had to do was wait for Arlo to wake up.

We waited. And waited. And waited.

At 12:30 I went and asked the nurse what was going on.

She said we could go back to day surgery, and see what was going on.

We got there, and the unit clerk said they forgot to call us.

Lame.

He was upstairs in recovery and we could go up and see him.

 

He was so groggy.

High from the morphine.

Rich held him first.

Then it was my turn.

He didn’t look like himself.

Swollen and stitched up.

—*—-*—

We stayed in the hospital till Sunday.

It was a relief to go home.

Night time was hell.

The hospital didn’t send morphine home with us, mainly because he was doing so well at the hospital.

Tylenol and Advil didn’t seem to cut it.

Day time was better.

He didn’t like being put down, and he didn’t want to be with anyone but me.

On Wednesday we had our post op appointment, the surgeon cut the stiches (that were holding the gauze in) and gave him his nose stent.

We found out that we don’t have to go in till March 7th! I did a happy dance.

//wednesday cuddles//waiting to be called//first look post op//a great friend came and kept us calm//so sweet//cuddles with daddy\\

In the past few days Arlo has pretty much returned to normal. He is sleeping better, he is eating better and he has started to laugh and “talk” again.

I am so thankful for everyone that has been with us on this journey, be it praying, a quick note or a hug.

 

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stressed.

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i have never been so stressed in my life.

i feel like all i can do is cry.

i feel myself snapping at Rich.

i give the same speech each time i am asked the same questions.

i have it memorized by heart.

“his surgery is in january. it is three procedures. gum line, lip adhesion, and ear tubes. the ear tubes are because his ears are filled with fluid.

he can’t hear. no it’s not a guess. we had the hearing tests done. yes i long for him to hear. i am grieving that i he can’t. his palate surgery isn’t until the fall.”

i buried feelings deep in my heart.

the feelings of fear.

of dread.

of tears. it’s a feeling i can’t put into words.

i feel like i am on the brink of tears.

i want to hold my baby and rock him in my arms.

i don’t want to hand him over to the nurses.

yet i want his lip to be healed.

i am a swirling vortex of overtired protective mama.

this is where i want to be.

holding my babies.

It’s a date!

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WE HAVE A SURGERY DATE!!!

I am excited, and yet completely scared out of my mind.

It’s one of those bittersweet things.

 I am so excited for this new stage in our life.

I am excited for no more tape, no more nam, and no more “gummies” and “doughnuts” (the gummies are the bean shaped stickers on his face, and the doughnuts are the tape strips the hold the nam in his face).

I am sad that he has to have surgery, anxious that he has to go under the knife.

I am excited to see him with big kissable lips (he gets tons of kisses now, it’s just a little tricky with his nam in.)

I will grieve the “loss” of his “wide smile” (that’s what clefty families call the extra big smiles).

And yet I know that he will be able to thrive when everything is repaired.

“When the cares of my heart are many,  your consolations cheer my soul.”

Psalm 94:19

The cares of my heart are many.

our surgery date is January 12, 2012

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Questions. Answered.

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I feel like I get bombarded with questions everywhere we go.

I always joke with Rich that we should make a list of frequently asked questions, and answer them.

So that whenever we are out, we can just hand out a paper and be on our way.

Just kidding. Kind of.

It’s not that I don’t like to answer everyone’s questions, but after being asked the same questions 72billion times…

Questions.

When is his surgery?

We have his our pre-op day on December 14th. We will find out then when we are going to do surgery.

What does his nam do?

His nam is basically a fancy retainer. It has pulled his gums in and over. Instead of having a 6mm gap, his gums are now touching.

Does it hurt?

I’m sure that it is uncomfortable at first. He only seems bothered by it after it has been “released”. Even then, he is really only angry because he wants it back in. He loves his nam. I’m actually getting kind of worried about what I am going to do after his surgery.

What will they do at his first surgery?

In January he will get: ear tubes, lip adhesion, and gum adhesion.

Are you worried about it?

Now, this question really depends on who I am talking to. If it is a random stranger (yes, it does happen) then I tell them about how amazing our team is (they are) and how much I trust them (which I do). If it is friends and family then I get more in depth about it. I am worried. I am giving my baby, my four month old, away to be put under anesthesia to have his mouth/face worked on. So yea, I’m worried about it. I try not to think about, I try not to think that after January I won’t be able to see his amazing wide smile. It makes me cry.

How many times a day do you pump, and how long do you pump for?

Seriously? Why do you want to know that?? I pump anywhere from 5 to 7 times a day (I should be pumping more often than that, sad, but true) for 25 to 30 minutes each session. Which is 25-30 minutes of CHAOS, Teag likes to DESTROY the house. Usually, I try and pump while Teag is strapped in his high chair, eating. Or while watching the “woo woo’s” on the laptop.

How does Teag/family deal with it?

Deal with what? He doesn’t know any different. Because he is so young, I’ve never had to explain to him what a cleft lip and palate are. Even if he was older, I know he wouldn’t care. Children are so accepting about “differences”. Our families have been wonderful. They really have been here for us when we needed it, be it physically here, or an email saying that they love us and are praying for us. (Hi, mom and dad)

Will you have more children? What are the chances of a cleft lip and palate happening again?

Yes we will have more babies. No I am not pregnant, nor do I plan on becoming pregnant ANYTIME SOON. The chances of us having a CLCP baby again is 2%, the same chances everyone else has. IF his CLCP had been a genetic issue, then the “risks” would be higher. Even if the “risk” was higher, we would still have another baby.

How do you stay so positive?

I’m not. I’m just good at “fakin’ it till ya make it”. Just kidding. Kind of. I have an amazing husband who is with me every step of the way. And I have God. He is with me every step of the way.

Wow, two kids under 20 months, you must be busy.

Yes, yes we are busy. Our day typically starts, when I can drag my lazy butt out of bed. Or when Teag decides to draw on my face with pen. Or when I forgot to shut the bedroom door and he figured out how to turn the tap on in the main bathroom. Then we have breakfast, I pump, I feed Arlo (those two often switch places, if Arlo is asleep, I pump. If he is awake, I feed him), we play. Then we nap, feed Arlo ,then I pump, then we have lunch, we play, run errands, feed Arlo, I pump, make supper, put Teag to bed, feed Arlo, pump, put Arlo to bed. Then, it is “me” time, till Rich gets home from work, pump again, and then finally it’s bedtime. So yea, we’re busy.

Any other questions? I honestly would love to answer them. Be it about cleft lip/palate or life, or pumping (because pumping is my life right now, haha) I’d love to answer them!

An afternoon at Children’s

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Today we had yet another appointment at the Children’s hospital.

Unlike most hospital/doctor/dentist appointments, I actually enjoy going to our weekly Children’s  appointments.

Each week starts out the same, we drive for an hour and a half (give or take) to get to the hospital.

Then we go to the dental clinic and see Dr. C (our wonderful dentist) who adjusts

 the NAM, and makes sure that all is going well with his gums and lip(s).

Then we go to the cleft clinic (which is conveniently located next door to the dental clinic) and Baby gets weighed and measured.

He is weighed and measured every week to make sure that he is gaining and growing.

So far at our last three visits he has gained 26grams(1st week) 32grams(2nd week) and 36grams (this week)

Currently he weighs 8lbs 3oz, up from 6lbs 9oz!

He has also grown 2 inches in one month!

Then usually the nurses “ooo” and “awwee” over Baby while we get ready to go home.

This week however, we saw the dentist, pediatrician, ENT, plastic surgeon and social worker.

We saw the pediatrician because Baby has been showing signs of reflux (unfortunately very normal for a cleftie baby), tomorrow we get our perscription for it.

We saw the ENT (ears, nose and throat specialist) who got our consent to get ear tubes for Baby. We of course agreed.

We saw the plastic surgeon who got our consent for Babys’ lip surgery and gum surgery. We of course agreed.

Lip, gum and tube surgery will all happen at the same time.

We were told that Baby A will have surgery in the beginning of January! (YAY!)

We saw the social worker (not the “I’m gunna take away your kid type”) who was wonderful, mainly we talked about family history (she drew a family tree), any concerns that we had and just talked to us about what to expect in the future.

I’ve said it before and I’ll say it again, I truly love our team. They always make us feel welcome and not just another face/patient.

Today was a great day.

And to top things off we have started taping Baby A’s lip (the nam moves the gum, the tape moves the lip so that it all matches up)

I thought it would be funny if he had a mustache.

I was right. Isn’t he the cutest little mustache man? I think so!

Disappointment.

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As a mother we try our best to show love and respect to other around us.

We try to raise our children not to judge those that are different from us, those that aren’t considered “normal”.

We do our best to show love and kindness to family, friends and even strangers, so that our children can learn how to love others.

We discipline our kids (be it a stern glance or sharp tongue) when they are rude to others, when they stare or snicker.

On Monday we had our weekly appointment at the Children’s hospital, we saw Dr. C (whom we love). Baby A got his NAM*, I was so worried that it would be a nightmare. I thought he would scream and fight (as much as an almost 3 week old could fight a Dr) but he didn’t. He slept through the whole thing, I was so proud. So relieved, I had heard tales of babies not doing well with feedings and just generally hating it. He has been a champ.

After our appointment we went to the mall and I got new glasses (which was needed as Little T had completely bent mine beyond repair), while the glasses were being made we walked around the mall. It was going fabulous, I was carrying the baby and Rich was carrying the carseat. We walked and walked (it was a big mall) and while walking we got lots of “oohs and ahhs” (Baby A is still tiny, weighing in at 6lbs 15oz) you know, the kind of thing that makes a mothers heart beat proudly.

That is until we got halfway through the mall and a ciosk worker had “ooh and ahh’d” (I had Baby A facing in, back to the world) while we walked towards her suddenly changed her reaction when she saw Baby A. I was shocked. The face she made was as if someone was walking through the mall, naked with three legs and mullet all while singing “Born this way”. It was of shock and disgust. It broke my heart. I was so shocked by her reaction that I didn’t tell Rich about it till we were at the other end of the mall.

I know that my son looks “different”, I know that people will stare, and point and make rude comments. I just didn’t expect it to happen so soon.

I am thankful that Little T is so young that he doesn’t understand that his beloved baby brother is different. He just sees brother with love, with no judgement, with no hatered or unkindness.

I wish we could all see each other through the eyes of a child.

*NAM stands for Nasoalveolar molding, basically it’s a fancy retainer that pulls the gum line closers together thus reducing a extra surgery. It use to take 3 surgeries but now with using the NAM there are only two.