Wednesday, October 7, 2015

All About G-tubes

Does the word g-tube make you a little uneasy? Do you think it's a horrible thing? Well, this post is to educate you a little on how life goes when you use a g-tube. All four of my girls came home with a g-tube. When we were first approached about the girls getting a g-tube, I was very nervous. I didn't want to give up on the girls taking their bottles for all their nutrition, but after 3.5 - 4 months in the NICU, I was ready to get them home. So, they had surgery to have the tube placed. It took about a week for them to recover from the surgery, then they were ready to come home. The plan has always been to try to get them to take their bottle and use the g-tubes as backup. Since the day the girls have come home, it has been an up and down process (and very, very, very frustrating) to get them to take their bottles. But, it's a battle worth fighting and they have made great strides over the past couple of months. I'm very hopeful that some, if not most, of the girls will get their tubes out this coming spring.

What's a G-Tube?
Some kids have medical problems that prevent them from being able to take adequate nutrition by mouth. A gastrostomy tube (aka G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. The part that stays in the stomach is referred to as a "g-button" as seen in a picture below.  The tube is connected to the button to give medicine and formula.

Why do our girls need a g-tube?
Our quints were born at 29 weeks 1 day, which mean, they were 11 weeks premature. The girls all had issues with the suck-swallow-breath technique, which is often related to prematurity. They also had issues with aspirating the milk into their lungs. Each girl has had several swallow studies to follow her progress. 

Mia also has a condition called subglottic stenosis, which is a fancy way of saying she has a narrow airway. Her narrow airway has also made taking her fluids by mouth an issue.

How long will the girls have their g-tube?
They will have their g-tube as long as they need it. The g-tubes will be taken out on an individual basis, so it depends on how each girl is doing. The soonest the g-tubes will be taken out is next spring. The GI doctor gave us two guidelines for taking the tubes out: 1) the baby has to go 6 months without using the tube, 2) the tube will not be pulled out during the winter months. They want to make sure the girls are not going to digress and need the tube once it's taken out, so that's why we have to go 6 months without using it. And the reason for not taking them out during the winter is because that is typically when kids are the sickest. If any of the girls get sick and can't/won't eat, we have the tube as backup. Gracie hasn't used her tube in about 3 months, but because the winter months are upon us, she won't get her tube taken out until spring.

Here's a rundown on how each girl is doing:
Mia - Is getting all her liquids from the tube. She is starting to drink a little from a straw, so I'm hopeful that she's going to start taking some of her feeds by mouth.

Tessa- About a month ago I stopped giving Tessa her feeds through the tube and I am making her take her bottles. And guess what??? It's working!!! So she's taking all her feeds by mouth now. I'm so proud of Tessa. At her last weigh in she hadn't gained as much weight as she should have so we give her some milk at night through the tube to make up for those lost calories she didn't take by bottle but overall, she's doing great!

Gracie- About 3 months ago, Gracie finally had her "lightbulb" go off and she started taking all the bottles, she doesn't use her g-tube anymore. She's our little rockstar!

Rayleigh- She is still getting all her liquids through the tube. She is drinking from a sippy cup but not consistently and she'll only take around 30-50 mL. But she is making positive progress and I'm so proud of her. She's getting there slowly but surely.

All of the girls are eating table foods by mouth, Gracie and Tessa do the best with foods but thankfully they are making progress in that department!

The girls (and Brant too) like to pull on their tubes. Sometimes, they'll pull so hard that the tube will come out. This is the little hole in their tummy. We have to put the tube back in when it comes out. It's an uncomfortable process and breaks my heart to see the girls crying in pain, but they have to have the tube. Thankfully the tubes don't come out very often.

Eventually when the tubes come out permanently, the hole will close up and there will be a tiny little scar to remind the girls of how far they've come.  :)

This is what the g-button looks like. The balloon part is in the tummy to keep the tube in place (you inflate the balloon after it is inserted into the tummy). 
This is what the button looks like when it's not being used. It's really not too noticeable under clothes. 
This is what the button looks like when the girls are hooked up and getting their milk.
The pump.
It took a few days to get the hang of the pump, but it's super easy now. I'm so thankful to our wonderful NICU nurse, Lindsay, for teaching me the ins & outs of the pump. I was scared to death when I took our first baby home, but she was a great teacher.
The bag (of milk) and pump.
And when we travel, we have a backpack (hanging on the pole) and we put  the pump and bag in the backpack and go.
Our girls have come a long ways in 18 months. I'm so proud of their progress. This journey has been a struggle and at times very frustrating, but I know we are going to eventually get there. Our GI specialist told us we're not running a marathon, we're running a triathlon, which means, this is going to be a long process. But God is good and I know He's in control of this situation and there will come a day when we finally cross the finish line and say good-bye to the tubes once and for all.

So please keep our girls in your prayers. Pray that they will start taking their feeds by mouth. And pray for Steven and I as we try to be patient through this process.


For more updates about our Six Sweet Seals, you can follow us on Facebook at Six Sweet Seals.

Wednesday, September 30, 2015

September 2015

So another month is in the books and I just can not believe this year is almost over. September was a little bit busier than August for us, but nothing too crazy. We have been enjoying some nice evening walks now that the weather is starting to get a little cooler in the late afternoon/evening time. So here's what we've been up to lately....

My first call of business was to decorate the house for fall. When September arrived I was ready to put all my summer decorations away and put my fall stuff out. We've had to do some rearranging with the house (you know, move furniture around because the quints try to escape and demolish the house!) so I didn't decorate as much as I normally do, but that's okay, this phase won't last forever. I love fall decorations, they make the house look very homey.
I love my mantle. 
My sweet friend McCall made this sign for me and it's just perfect. I can't think of 3 better words to describe my life.

The quints love playing in my pumpkins.
One day while Brady was still in school, the quints finished therapy early, so we went to the park for some fun.
Yes, my hands are full, but you should see my heart!   ;)
All SIX kids had their half-birthdays this month! I can't believe we have a three-and-half year old & five one-and-half year olds!
I grabbed this cake while grocery shopping. I had been craving birthday cake and I had the perfect reason to indulge.
Oh, and I'm the one who tried to write the 1/2 on the you can see, I'm no cake decorator. 
We celebrated Grandparent's Day with our wonderful family! It's always a blast to get everyone together.

The fair was in town and we took Brady again this year. It's always so nice to get away with just Brady and have fun. He had a blast and was upset when it was time to go.
You can't go to the fair without eating a Funnel Cake!!! Yummy!!
He had a blast riding the "trains" aka roller coasters. He is fearless.
The Six Sweet Seals all had a dentist appointments (6 month check ups) this month and I'm so happy to report that they all have great teeth!!!
I love our dentist office because they have fun stuff for the kids to play with in the waiting room. 

Brady was such a big boy.
We also enjoyed lunch at a local cafeteria. The kids drew lots of attention from all the customers.
We took the quints for their 18 month checkup to our Dallas Pediatrician and they are all healthy. Mia and Brant have not gained weight like we'd like, so of course that worries this mama, but overall, they are healthy and for that I am so very thankful.
Dr. Suterwala was the quints' NICU pediatrician. I'm so thankful he is still following their progress.
Brady is doing so well in school. I can't tell you how proud of him. I can tell he is learning so much. And he's finally got the hang of how to act while at school too!
He's taking his teacher's blood pressure (I suppose) and don't even ask me what the device is that's on his head.
I love that his sweet teacher is thoughtful and sends me little messages like this every-once-in-a-while.
The quints are doing well in therapy. Mia was having some attachment issues and not wanting to do anything but cry, but by the end of last week, she was doing much better.

Therapy can be so much fun...except if you're Mia. 
Steven still has a garden. He wasn't planning on growing any more watermelons, they just came up on their own. And there's a lot of them. I've been begging him for years to plant me a pumpkin patch, and he finally did. However, it hasn't rained enough to have a good harvest, but we at least do have one. Hopefully, it'll make it.

How many watermelon can you find? I found SIX! (Our lucky number) ;)
Our one little pumpkin.

We ended September with a boom! Today started off crazy. Mia vomited, so that had to be cleaned. I was holding her, trying to keep her calm so she wouldn't vomit again. All the while Tessa comes over and stands by my feet. Then Mia started vomiting again and it landed right on Tessa!! While cleaning up Mia and Tessa, Brant decides to destroy a table in his room!! Then we get to school and Brady decides to get an attitude with me and cries because he doesn't want to go to school. Just another crazy day in the life of the Seals.   ;)
Brant's room... glass shattered everywhere!!!
Well, that about sums up our September! It's been a great month and I'm so glad the weather is starting to turn cooler. Steven, Brady, & I have enjoyed several high school football games this month too. I want to take the quints to their first football game this year, but I know it's going to be a lot of work and very little football watching. We shall see if we get brave enough to bite the bullet.

Happy Fall Y'all!!

You can follow the Six Sweet Seals on Facebook at Six Sweet Seals. Thanks for following our journey! 

Monday, September 21, 2015

Rayleigh - 18 months

Rayleigh is my easy going, chill little girl. She's very sweet and likes to do things on her own.

Height: 30in

Developmental Accomplishments: Rayleigh walks everywhere. She's doing pretty good going up stairs. She probably has the best vocabulary out of all the quints, you just wouldn't know it because she's so quiet.

All About Rayleigh: She has dark, brown, curly hair and lots of it. Her hair is so wild. Her eyes are brown. She has chubby cheeks. She has a raspy voice. She makes the funniest faces with her eyebrows. She'll move her eyebrows all kinds of ways and it's hilarious.

Likes: Rayleigh likes to be held by mama, she's a total mama's girl.

Dislikes: She doesn't like it when strangers come up to her and try to hold her.

Food: She still uses the g-tube for liquids. We are working with her taking some liquids from a sippy cup. She's doing pretty good on eating table foods.

Personality: She's quiet and still likes to be alone. She's got a cute and funny personality and is pretty comical but just not as animated as some of her siblings who demand lots of attention. She pouts when things don't go her way. She's very sensitive.

Messy face

Climbing on the chair with Mia.

Future cheerleader

She did great at the dentist office.

Yay for no cavities! 

Playing in the waiting room.

Miss Serious

Her hair is so long that she can wear 2 ponytails. 

Sweet Rayleigh

Gracie - 18 months

Our little diva keeps us on our toes. She is full of personality and lots of fun. She is definitely the leader of the pack.

Weight: 21 lbs
Height: 31 in

Developmental Accomplishments:  Gracie is fast as lightning! She runs everywhere. She jibber jabbers all the time. She'll tell you some big stories, too bad we can understand them just yet.

All About Gracie: She has long, straight, brown hair and hazel eyes. She has the loudest shrill you've ever heard. She takes good long naps and sleeps well during the night. To me, she's the easiest of the quints because she's so independent and can do so much for herself. This girl has the longest toes I've ever seen!

Likes: She likes food! She likes to boss people around, hence, her nickname, Boss Lady. She likes to hit her siblings and head butt them as well.

Dislikes: Gracie doesn't like it when her siblings take something away from her. She is really bad about hitting and head butting when she's upset.

Food: No more tube feeds for my Gracie Lou!!! She is my little superstar when it comes to eating. She eats everything! She likes food.

Personality: She is funny and full of personality. She has the funniest laugh and loves to make you laugh. She loves to have all eyes on her. She's still our little diva and can throw some major temper tantrums. She's feisty and a bit of a daredevil, one day I caught her jumping off one of our toys. She'd jump, land, get up, and jump off again. She is very confident. She's a mess! :)
Oh my little Gracie Lou

Climbing in drawers at church.

Selfie with Makenna

Future cheerleader

Helping the dentist out...

Yay for no cavities!

She's so funny!

Love this wild girl!

Brant - 18 months

Poor little Brant is so outnumbered. The girls just push him around like a rag doll. Brant is all boy! He has the sweetest little smile that just melts my heart.

Weight: 19 lbs
Height: 29.5 in

Developmental Accomplishments:  Brant is fast as lightning. He climbs like a little monkey. You can't take your eyes off him because he'll crawl on the furniture and will get into whatever he can get his hands on. He jabbers all the time. It's so funny listening to him carry on a conversation. He is a silly little guy and can be a goofball at times.

All About Brant: He has light brown hair and hazel eyes. I keep his hair short, because if I didn't, it would be wild and everywhere. The older Brant gets, the more he reminds me of Brady. They are so much alike. Brant has the widest little feet. He screams so loud that it hurts your ears. The boy is loud when he's upset.

Likes: He likes to climb on everything. He loves to go outside. In fact, he can open the doors and go outside on his own, so we have to make sure we keep all the doors locked. He's really good about taking his medicine.

Dislikes: He hates being locked inside. He wants to roam around and get into everything and anything, so he stays upset about the fact he has to stay locked up. He doesn't like to take long naps.

Food: He is drinking up to 5-6oz. He's doing so much better eating foods with different textures.

Personality: He is very high-maintence and he's very whiny. He's a daredevil and fearless (unless he's dealing with his sisters, then he tends to backdown). He's really funny and is good at making you laugh.
1st pep rally

Just chilling.

Getting his teeth checked and cleaned.

Yay for no cavities!

Just a swingin'

Climbing like a little monkey.

So happy..

He has the most vibrant smile!

Sure love this little guy.