Not the best news

Today Davy's MRI results came back. I knew it wasn't good when the Doctor asked me to have a seat. Basically her pituitary gland is in the wrong place.

This will affect her thyroid, her growth(for her body and brain), her growing through puberty, metabolism, her cortisol hormone(which we knew about)and her optic nerve(a possibility of blindness or just spotty vision)

When the Doctors mentioned blindness I immediately thought, no way she can see me. She totally smiles at me and makes eye contact. They had an opthamologist come in to check her optic nerve and he said it looked good. So no blindness(what a relief.)

Then an endocrinologist came into explain what all this would mean for us and Davy. The good news is....... all of this can be managed through hormones and steroids. She will be taking some meds orally and will most likely need a shot every night for her growth hormone. The most worrisome part is the cortisol. Scott and I will need to take extra precautions here. If she were to get sick(a cold or flu) she would need a steroid shot and go straight to an ER. This is gonna be difficult to manage with 3 germy boys. My Neonatal Doctor then told me how Davy's malrotation surgery saved her life. If she were sent home with us not knowing about her cortisol levels, it would have been catastrophic. It's amazing how already that unpleasant experience has turned into our biggest blessing.

** Just a side note. I got home from the hospital today to find a package full of the cutest hair bows for Davy from my friend, Elaine. It really did cheer me up and it couldn't of come on a better day. Thank You Elaine.**

Good news!!!

We just got Davy's metabolic tests back. She was tested for many different things, like metabolizing fats, cholesterol etc. and everything came back NORMAL!!!!! We are so happy, this is huge news for her(and us). I really thought she was going to have a problem in this area, which would have meant a crazy diet. So this is a giant step forward for our little one.

Tomorrow she will be getting an MRI done to check out her pituitary gland. Some thing is off with her thyroid and her body isn't producing the hormone cortisol, which is a stress hormone. That is one reason why her body didn't react so well after her surgery.

She is going slow on her feeds now. They are pumping my breast milk through her G-tube a half an ounce over an hour continuously all day. She is still not completely keeping it down, so they are giving her 2 different meds to help it go through her intestines faster and the other to help the acid.

She is smiling and cooing all the time. The nurses love coming in to say hi to her. It's making it harder to leave her. Today I had the urge of just running out with her. Could I get arrested for stealing my own baby?

Remember him?

Dear Stinky,

I know life has been hard for you lately. You've had a Mom who was really sick. Then a Mom who was really sad. To a Mom who is gone a lot. Your life has been turned upside down. Know that I'm always thinking of you. Know that I'm trying really hard to be with you as much as possible. While people are asking me how I'm doing or how Davy is doing, I wonder how you are doing.

Every time you throw a tantrum, everytime you hit someone, everytime you say"go away!", it makes me sad inside. And that every problem you'll have in life you will trace back to this time when you felt abandoned. I hope you are stronger then that. I hope you rise above this challenge.

Love, Mommy

What's wrong with this picture?

My six year old will not sleep in his bed, But Charlie(our dog) will. Charlie isn't stupid, He figures why should this comfy bed go to waste? I asked Ollie why he likes to sleep on the floor, and he says, "It's because my bed is too soft." Hmmm, whatever.

one month

Davy girl is ONE month! I'm switching things up this time around and I am not gonna put the word month in the pictures. You get the gist with just the number, right?
Well there is a lot to tell in this one month......
* Davy is now a whopping 9 pounds 5 ounces and 20 inches!
* She has lost her first tooth. But got jipped by the tooth fairy though.
* She's had her head shaved 4 different times
* Davy wears a crown of cotton with IV dread locks.
* Davy has 5 different Doctors we are working with for her. 1. Neonatal 2. G.I (for her tummy) 3. Cardiologist 4. Genetic 5. Endocrinologist ( for thyroid and metabolic issues) And this doesn't even cover the team of 5 that will do her cleft surgeries!
* Today I got to hold her chest to chest for the first time since the night she was born!! That is one of my favorite things to do. I also got to hold her standing up, and rock her back and forth! It's so nice to get to love on her.
* She is starting to get back on breast milk again. We are up to 17 ml. So far no problems. I've been trying to breast feed her but she is having difficulties, so she is fed through a G tube that goes straight to her tummy.
* she has had 1 surgery, 2 infections, jaundice(still does), Hypertension(still), 3 heart defects(PDA, ASD, VSD), partial collapsed lung, a blood transfusion and some metabolic issues.
* Scott "claimed" that she smiled at him last night. I totally didn't buy it. But check out the last two pictures, I guess I was wrong.
We are so happy to have Davy here with us. Now if we could just get her home.............

March 20, 2010

A month ago Today......

This is when the epidural stopped working and the prayers started.

I am so thankful that my little girl is here.

Thank You Ms. Lyon

About a month before my due date I started to think about how I wanted my delivery to be. Meaning If I wanted people in with Scott and I. I always had my sister, Beth to take pictures, so Scott could be by my side. I've had moms for support, but I knew this time was different. I had the "what if she doesn't make it" in my mind. It may seem weird but I barely could handle my emotions and I knew I would not be able to handle some one else's grief as well. Then I thought if "something bad" were to happen I would want pictures of her and I know It would be hard for us to do it. Then the thought of Amelia Lyon popped in my head. I knew I could ask her and she would help us. Anyways the very next day I received this text.... Hey Ruthy, I've been thinking about you a lot and I'm not sure if you already had something lined up, but I would love to come and capture this next birth for you. let me know how you feel, it would be my gift to you. Love, Amelia.

So weird and amazing how in tuned some people can be. Well Ms. Lyon did take pictures of Davy's entrance into this world and she did a fantastic job. She was a little fly on the wall snapping away pictures. I hardly knew she was there. My question to you is...... I want to post some, do I go all out and post A LOT? Or don't bore you and post a few?

Prayers work

When I walked into the NICU today, this is what I saw. No tubes, no breathing machines. Just my Davy girls sweet little face. I heard her cry. I saw her suck on a pacifier. She even pooped for the first time since her surgery. She had a teaspoon of my milk through her G -tube. But the best part of today was........ I got to hold her. I held her for hours and she was awake and alert for most of it. Today I caught a glimpse of her coming home.

When Max & Ollie met Davy

The Boys finally got to meet their little sister. We took them last week before her surgery. First we met with a family councilor, who explained what they were gonna see. They also could ask any questions. Of course there were many. Max asked really good ones like. "What is our main concern with our sister today?" At the time it was her tummy and her surgery. Ollie asked "What happens when she has a cold? will she eat her boogers?"

When we first walked in, Ollie was so concerned. He asked if he could touch her. He had his hand on her the whole time. He really wanted to hold her, but we told it him it's too hard with all her IVs. Max was enthralled by all the machines and wanted to know about all the meds she was getting and why.

In case your wondering we are short one child... Harper. I kept having these visions of bringing him and him pulling wires and being taking out of the NICU screaming. So Harper will have to wait to meet Baby sister.........I don't think he minds.

** Thanks Heather & Pierre for our cool big brother shirts.**

A step in the right direction

Yesterday I walked into the NICU and saw this.
I started crying, it was totally unexpected. She was looking up at me and her eyes would roll back in her head. I got 2 minutes with her. It was so great, I was in a good mood all day. Then they had to sedate her again. She also moved from her oscillatory ventilator to just the regular ventilator. That's a huge step for her. They are hoping to have her on room air in 2 days.
Today she didn't make any progress, but she didn't digress either. Her jaundice is back. Because she is older the lights won't help, so more meds. Thank you everyone for keeping her in your prayers, it means a lot to us.

Surgery #1

This is my favorite picture of Davy. It was taken from my iPhone the night she was born. She just breastfed and Scott was burping her. She stayed in my room with me that night. I laid her on my chest and snuggled her tight. If only I knew then what I know now. I would have savored it more. I would have held her the whole night.

These are my least favorite pictures of Davy. They were taken tonight. She is so lifeless and hooked up to so many machines. Surgery and fluids have made her puffy and swollen.

Davy has now been in the NICU for over 3 weeks. She just had her first surgery on Friday. She had a malrotation in her intestines, her appendix out because it was in the wrong place and a feeding tube put in. It's been a rocky recovery for her. She isn't recovering as they would have liked. She has not been able to breathe on her own. She is on a machine called an oscillatory ventilator that breathes for her. She also has pulmonary hypertension and is on medications for it. And last night she had a blood transfusion. She is heavily sedated, so she is feeling no pain when the poke her with needles. We are not allowed to hold her and touch her too much. So we sit in a chair next to her and talk. If I were Julie Andrews I would sing to her, but I'm not, so I don't.

** Scott just walked in from the Hospital, he said she is making baby steps in the right direction. They have turned her ventilator down a little. So.......good news.

Happy 6th Birthday Ollie! (march 24th)

Not good to have your Birthday the day after your Mom gets home from the hospital. I wanted to have A party for him, which then turned into an invite a friend to do some thing cool thing, and we didn't even do that. But don't feel too bad for him, he did get to go to the Nick choice awards with Dad. where he met the love of his life Sam, from ICARLY.

And thanks to Auntie Amber, Ollie had cupcakes and juice at school. I waddled myself over to his school, so I didn't die of mothers guilt.

Ollie has been extra cuddly and lovey to me lately. I think he knows I could use some extra lovin. I always make him promise that he will never stop giving me cuddles even when he's an old man. He told me he can't promise me anything. Would it be weird to see a 40 year old man cuddle with his mom on the couch?