Friday, July 29, 2011

Congenital Epullis

Our Stanford Story

As most of you know, my daughter was born with excess gum tissue coming out of her mouth, or in doctor language, a Congenital Epullis.

It never showed up on ultrasounds, being that it is tissue. It did though show up on a 3D sonogram I had done at Peek A Baby at 32 weeks gestation. But being that doctors don't work there, they can't tell you anything. I did keep asking her "What that thing is on her mouth" but she just kept saying it's her hand I think. But I knew something was up, cuz it didn't move. I thought it was cleft lip or something.

Never in my life had I, or anyone I know for that matter, heard of a Congenital Epulis. The doctor who delivered Tynlee said it's the first he's ever seen.

Our little sweetie is SPECIAL in soooo many ways!

So when they took Tynlee out of my belly, cut the cord, and sent her right through the NiCu doors, my husband knew something wasn't right. When he left to be with Tynlee and Dr. Clare came up to talk with me, he told me about the growth but didn't know what to call it.

SEE! I wasn't crazy! Mama knew!!!

The NiCu guy at Doctor's Hospital(he's from Stanford), took a guess and said "Congenital Epulis".

He was RIGHT.
she actually had 3 in her mouth but only 1 could be seen outside.

Facts about a Congenital Epulis:

-Grows with baby in the womb(in late pregnancy)
-It's excess gum tissue
-8 to 1, it's found in females
-First founded, in 1871
-Only 186 cases ever reported
-SO RARE!
-

Tynlee was taken 2 hours later to Lucile Packard's Childrens Hospital in Palo Alto. Well known hospital nationwide. People with high risk children travel all over the country to bring their child here and we are the lucky ones who are only 2 hours away!

They didn't know how serious it was but it was too severe for her to eat by mouth. We were BLESSED to see she was breathing WONDERFULL and her vitals were great. She had an apgar score of 9, both times. She had no signs of being a preemie, born at 36 weeks, just this massive silver dollar size growth on her mouth. She was still the most BEAUTIFUL thing we'd ever seen!

When I saw Tynlee for the first time, I didn't even notice that. I was just so happy to FINALLY have her in my arms. I knew she would be taken from me soon, so I soaked it up as much as I could being so drugged. :

Her and my husband were then dragged off to Stanford.
They transported Tynlee in an ambulance from Stanford but they didn't have sirens on because "Thank the Lord", it wasn't an emergency.

Before they left though, (about 11pm at night), they came into our room with Tynlee on a HUGE adult size gerny in a little baby incubator, with all the family and stated the risks of driving her there in the rain and stuff I was nervous to here. But thankfully, they made it safe and sound and had no problems with my sweetheart.

My husband texted me when they arrived and got Tynlee all situated in the NiCu there. He was sad he already had to leave her side. He went back to hospital and got about 4 hours sleep and was back to hospital by 7am. Never left her side. He was such a trooper about sending me pictures, cuz you know I asked for them ALL day.

My beautiful MIL sent me a video of him and Tynlee, that was it for me, I lost it. I wanted to be there with them so bad.

My gorgeous, amazing mom and sister barely left my side. My mom stayed overnight with me and gave me the royal treatment there.(So glad she works on postpartum)!!!! I had wonderful visitors who encouraged me, prayed with me and brought me some very nice treats.

Sunday dragged on slowly but I got up and walked as soon as they took me off the Magnesium. I was so happy to get out of bed. The pain didn't even faze me. I couldn't wait to get out of there and be with my baby and hubby. I was determined and VERY motivated. All you mommy's could understand that!

I walked several times to get my strength back. I wanted to show my doctor I was strong enough to leave. I took a shower, FINALLY. It had been almost 4 days :( Brushed my teeth for over 4 minutes haha...and I begged to go home.

So Monday morning, my doctor came in and said I was free to go whenever. My mom MADE me wait another 6 hours. Can you believe it? lol. I look back now and think WHY ON EARH DID I LISTEN BECAUSE I WANTED TO GET TO MY BABY!!!

But she thought it was best for me to rest a little more while I could.
Earlier that day, my sweet dad brought Tynlee all of my colostrum I had been pumping just in case they would be able to feed her bottle after surgery.

She only got a little bit of electrolytes through an IV. No food. and she only lost 2 oz! AMAZING HUH!??! And only GAINED from there. That's the MOST she lost.

We weren't sure when Tynlee's suregery would be on Monday. they thought between 10-2pm but then they had an emergency that had to be done first.

Tynlee finally went into surgery at 5pm.
Stephen called me and I could tell he was a little choked up.
It was practically(besides him sleeping for a few hours at night) the first time he HAD to be away from her and he felt helpless. I would have been a mess if I was there for that.

I was being forced to take my pain meds. I didn't want to. To be honest with you, I was feeling great and healing wonderfully.

After I got off the phone with Stephen, I was the only one in my room, I sat on the edge of my bed, and prayed...harder than I'd ever prayed before.

20 minutes later, Stephen called. "She's out and doing GREAT!"
That was fast!!! They weren't sure if it was going to be 2 hours or what.

PRAISE GOD!!!!!!!!

He then sent me a picture and you couldn't even tell anything was EVER there!

They just shaved it off..not even a stitch!

AMAZING!

Healing hand of God??? YES!!!

At 6pm, my brother and mom drove me up to Stanford to be with my baby and hubby. It was the longest 2 hour drive, EVER!!!

I got there and they "wheeled" me up(since it's such a big hospital), to the 2nd floor, NiCu and once again i was reunited with my husband and my sweet adorable Tynlee. I cried my eyes out. I kissed her continually and my husband, of course. He was my ROCK. He amazed throughout the whole process. FATHER OF THE YEAR AWARD!!! I fully trusted him there with Tynlee.

Three hours later, about 2am, we went to the hotel and slept till 6am then headed back to see Tynlee. She was still kinda out of it, on the breathing tube. Around 11am, they finally got the okay to take it out.


My little girl is a TROOPER AND A FIGHTER. She was under COMPLETE anestesia at 2 days old!!!

I then go the okay to try nursing....it was hard at first...she showed no interest because she was sooo jaundice and soooo tired. Sleepy sleepy girl....

I kept trying. I was deteremined. THAT'S WHY GOD gave us those things right??
I knew it was BEST for her and I was gunna work my booty off to give it to her.

Lactation lady helped me a lot. Tynlee finally started doing pretty good.

I was so nervous I wouldn't be able to nurse because we didn't get to try RIGHT AFTER BIRTH like they say you should but seriously, we are still GOING STRONG at 5 1/2 months and that's all she gets ;)

Wednesday came around and Tynlee had to do a 2 hour carseat test being premature. She passed it with flying colors. Then, we got discharged around 3pm.

We were finally together. Us 3, as a family!

We had a follow up appt. a month later with the wonderful "Ear, Nose & Throat" doctor who did her surgery. It was great to see them again and they were very impressed with Tynlee's healing.

We know see a "Ear, Nose & Throat" doctor here a couple times a year for a while. They said it shouldn't affect her at all in the future but want to check her frequently to make sure.

If you didn't know us, and our story, you wouldn' even know she ever had a problem or a preemie for that matter. Tynlee has more than TRIPLED her birth weight a 5 1/2 months. She is a chunky monkey and her mouth is PERFECT!!!

They checked the tumor for cancer and it was totally BENINE!!

Being at Stanford was a humbling experience. Our baby was the biggest and healthiest baby in the NiCu. Thankfully, Tynlee's problem was only cosmetic.

Several babies were 25 weeks gestational. Barely weighing in a 1/5 lbs. Then 26 week old twins came in on Tuesday night and one weighted under a 1lb! It's amazing what doctors can do these days! They were the size of a water bottle. So so so tiny with so many cords. We watched as the parents would sit there by their baby and not even be able to hold them.

Stanford staff was AMAZING. Top notch! They were so sweet and answered ANY question we had.

All in all, they decided to do a CASE REPORT on Tynlee since her condition was SOOO rare!! They sent it to us and it will be in medical journals all over the world.

She's FAMOUS!

I am glad to say my little girl is perfect and truly a gift from the Lord.

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