Texas is on fire!

Texas is on fire!  All over central Texas wildfires have started.  For those of you who follow this blog from other parts of the world, I have included some pictures so you can see what central Texas has looked like the past few days.  Those who live here, know.  All you have to do is look up in the sky to see smoke in several different directions.  As I write this, most of the fires are being contained since the winds have died down; however, with no rain in the forecast, we are all still very much in danger.

(These are not my photos.  I took them off of news websites.)

Jim and I drove to our hometown, La Grange, on Sunday.  We were planning on going to the Fayette County Fair, but our plans quickly changed.  As we drove through Bastrop (pictured above), we noticed huge smoke clouds.  The sky was covered in smoke.  

When we got to La Grange, we found out that wildfires were spreading in Fayette county too.  One large fire was threatening the home of Jim's aunt and uncle's house.  We drove over there to help unload their house.  Several family members had already come over to pack up their belongings.  As we made trip after trip carrying boxes to our vehicles, the fire continued to creep its way closer.  They live on a farm, and as far as you looked into the distance, all you saw was burnt pastures and a lot of smoke.  Finally, the fire department made their way out there (they were busy with other fires), and the fire was contained.  Unfortunately, the fire had already claimed the old Citzler house.  The house had been in the family for several generations.  Jim's grandma's grandparents lived there.  This is all that is left.

In Bastrop, 36,000 acres have burned, and 575 homes have been destroyed.  In the Austin area, over 300 homes have burned.  It is devastating.  We need rain desperately, and lots of it!  Please pray for rain in Texas.



The Feeding Saga Continues . . .

A picture doesn't always tell the whole story, does it?  Cade recently went for a follow-up barium swallow study.  My nine year old niece asked me how he did.  When I told her that he didn't do so great, she didn't understand how that could be possible.  She said, "but Cade likes to eat now."  

He does like to eat now.  We are so thankful that he does.  He doesn't even have problems with most textures.  He'll eat almost anything.  The problem lies in what happens when he swallows the food that is in his mouth.  For him, each bite or drink has to somehow manage to go into his stomach rather than his lungs which is known as aspiration.  Aspiration is very dangerous; it can lead to further lung damage and/or aspiration pneumonia.  The pneumonia he had in May could have been caused by this.

We went to Dell for his swallow study.  It's quite a big deal; a speech therapist, a doctor, a nurse, and a radiologist were all present.  They mix barium into his bottle and into his food.  They then set him in a chair in the middle of the x-ray machine.  I fed him as they watched through x-ray where the food or drink was going.  During the study, he aspirated two times - when he was drinking through a straw and when he was using a faster flow nipple on his bottle.  In both cases, he was getting too much liquid too fast.

Remember that Cade only has one working vocal cord.  When we all swallow, both of our vocal cords close, and if that doesn't work, then our epiglottis blocks things from going into our lungs.  If that doesn't work, we have a very effective cough using both vocal cords again to expel what is going the wrong way.  Cade does not have all these lines of defense.  (Side note: when Cade coughs, he sounds like an old smoker.  He has to try to cough with just one vocal cord closing.  The result is people staring at us when we are out in public as if I have brought my deathly ill child out and about.  When I ignore his cough because I know it is just how he coughs, people look at me like I'm a terrible mother ignoring her very sickly child.  It's far too long of a story to explain to them that is just how he coughs, so I just walk on or continue shopping.)

The recommendations from Dell were to use only slow flow nipples, no straws, and all sippy cups must have the stopper in them.  He did fine with thin liquids with a slow flow, so we do not have to thicken the Pediasure.  He also did fine with solid food.  It's not the worst news we could have heard.  It did however make me feel bad that we unknowingly were allowing him to aspirate by using a faster flow nipple.  Of course, now with every cough, I wonder if he is aspirating.  It is not a good feeling. 

So if you see my son at three years old still drinking from a bottle, do not judge.  We have worked so hard just to get to that point.  Actually, the speech therapist said that over time, he should get better at controlling his swallow. 

And to finish, here are some more cute pictures of my kids eating.  They love spaghetti - mostly, I think they like making a mess!



I Love Blogs!

I love blogging.  I saw a banner on another blog that said, "Blogging is cheaper than a therapist."  Isn't that the truth?  I started this blog to keep everyone updated with the progress of the babies.  While it still serves its initial purpose, it has also become my therapy.  My sister says I should seek a real therapist.  I'm sure that wouldn't hurt, but honestly, when do I have time for that?  I know that I am still traumatized by their birth, but I don't see how a therapist is going to make that any better.  Most of the world has never even seen what a baby looks like that only weighs one pound and whose skin is so transparent that you can see through it.  Anyone who can go through seeing their baby like that and isn't traumatized by it needs a therapist.  I'll stick to blogging.  

I can thank my blog for helping me find a way to get Medicaid for Cade.  An old friend saw my link to the blog on Facebook.  She read one of my posts where I was complaining about how insurance wouldn't cover enough therapies, etc.  She is a nurse and told me how to go about applying for the Medically Dependent Children's Program since Cade had a g-tube.  Thank you, Renita!  Our NICU social worker should have told us about this program when we left the hospital, but she didn't, and it ended up costing us about $20,000.  (That's a whole other story.) 

In this big blogging world, I've met so many amazing mothers of micro-preemies.  I follow several blogs.  I love reading blogs more than I like to post on my own.  Reading blogs is like reading a live, unedited memoir.  It's real, it's impactful, and it's comforting.  When I read posts from other micro-preemie moms, I feel like I know them well - like we are old friends.  Sometimes as I read the words, I feel like I could be writing the exact same thing.  Here are a few examples from my blogging friends:

This is written by Sarah, mother of Samuel (24 weeker), on her blog www.samuelpope.blogspot.com  "Not too many months ago, I found myself surrounded by pregnant women.  Surrounded.  Suffocated.  Smothered.  Overwhelmed by.  I didn't know how to cope with the jealousy I was feeling.  I prayed about it a lot.  I tried to force myself to 'talk baby' with my pregnant friends.  When that didn't work, I resorted to putting distance between us so that I could avoid feeling jealous altogether." She goes on to say that she had overcome this jealousy with the birth of her beautiful niece.

I hate to admit it, but I have avoided baby showers, and I cry when I see pictures of joyous full-term births surrounded by friends and family holding big, healthy newborns.  It actually looks strange to me that all those people would be touching a newborn without first "scrubbing in" at the scrub station.  Of course, I am happy for them; I wish all babies could be born big and healthy; however, it still hits a raw emotion for me that I hope will fade in time.  I almost feel selfish saying that because I had that joyous birth experience with my first daughter; is it being greedy though to want the birth of all your children to be joyous?

When the babies were in the NICU, I often thought about how strange it felt that the world was going on as it always does even though I was walking through life in a permanent zombie-like state.  Katrina, in her blog www.brycemoline.com writes, "I'd stand there in line and smile vacantly at strangers wondering maddeningly how all these people could go about their lives so nonchalantly, how could they go for coffee, laugh at dumb jokes and worry about their petty problems.  Didn't they know I was losing my baby boy!? Didn't they know that as we stood there he was fighting for his life!?"

There are countless other posts that I have related to in many ways.  We have a "blogging circle", so to speak.  They follow all the trials, appointments, therapies, complications, and eventually triumphs of Camdyn and Cade just as I follow their kids' accomplishments.  I feel like I know Samuel, Charlie, Jack, Bryce, Eliza, Harper, Sofia, Olivia, and so many other preemies.  I cheer when they accomplish new skills.  I know how hard they had to work and how much therapy they had to do to meet those milestones.

Alyssa says it so well of her 24 week twins on her blog, www.miikkifamily.blogspot.com., "Love, happiness, pride, joy, and a huge dose of *relief* as every new skill is learned. /When your babies start crawling around and standing up after you've spent days, weeks, and months wondering if they are going to spend their lives in a wheelchair....words cannot explain the feeling. /Some people might wonder why I keep dwelling on the fact that the girls were preemies. Well, the fact is that they are still preemies. It's not a condition that goes away. . . . I will dwell in the fact that my babies are miracles, because they are and always will be. Every single thing they do is amazing." 

I have created a support network of local preemie moms through Hand to Hold.  We get together once a month for coffee or dinner.  I hope it grows to reach out to more moms.  Being a preemie mom can be isolating at times.  Another twin mom in our group said it was nice to have a place to share stories/advice with other preemie moms.  She said she had joined a multiples group, and their problems were just not her problems.  I knew instantly what she was talking about.  It's hard to listen to other moms complain about their babies' sleep schedule when your cribs are empty because your babies live at the hospital or listen to them worry about their babies not eating vegetables when yours is tube fed, etc.  I've met some of the most amazing women through this group.

Back to blogging - I've searched high and low to find other blogs of surviving 24 week twins.  I know that several people do not blog and there are more 24 week twins out there, but as much as I have searched and searched to find it, I have only found two other blogs of surviving 24 week twins, and one lives in Finland!  Interestingly enough our stories are very similar (see 24 week twins link above).  Who knew that a girl from Texas had so much in common with a mom in Finland?

Baptism - Part I

Jim and I finally set a date for the babies' baptisms.  They will be baptized next month in the church in which my husband grew up.  Brenna was baptized when she was 3 months old; the babies weren't even out of the hospital at 3 months old.  We were asked if we would like to have the babies baptized in the NICU.  I immediately said no to that offer.  To me, it felt like a death sentence.  If I gave permission for a pastor to baptize them, it meant that I thought they were going to die.  I knew the grim statistics; they had a 50-60% chance of death.  Cade's chances were probably even higher after his difficult first night.  Even though I understood this, I could not let myself think they would die, and I definitely wasn't going to have a ceremony of baptism to prepare them for heaven.  I needed them to stay here on Earth with me for a long time.  I already loved them - all 2 combined pounds of them!  I needed them to fight and to live.

I had a lot of talks with God during their NICU stay.  Most went like this - "Why?  Why me?  Why my babies?"  Later they became, "Why did my babies live while others did not?"  Tragedy can either turn a person to or away from God.  For me, it brought me closer to Him than I had ever been before.  I knew there wasn't much I could do except sing/talk to the babies and pray!  I did a lot of praying.  I prayed every waking moment, and I think I prayed in my sleep too!

One of the first times that I visited the babies I decided I would "baptize" them.  I know that I am not ordained, but it was what felt right to me.  I traced the sign of the cross on the top of their isolettes just above their heads.  We weren't allowed to touch them due to their extremely underdeveloped nervous systems.  Tracing the sign of the cross on their heads would have hurt them.  I did not do it because I thought they might die; I wanted them to know that I loved them and that God loved them.  There were no baptismal waters, just lots of mama's tears. 

I am excited to have the babies baptized in the church and for everyone to share in their baptism.  I'm really excited to dress them up in cute little baptism outfits!  I'll definitely be posting pictures of them at the end of next month in Baptism- Part II.

This is a picture of Camdyn (she is in there under all that equipment) when I first saw her.  The nurse took this picture for us.  I don't know if the rest of you can see it, but I can see the worry not only in Jim's face but just in the way his hand is resting on the isolette.  Cade's isolette is right behind us.   Having multiples was an added difficulty of being in the NICU.  I remember checking the time often.  "I've been sitting here with Cade for 15 minutes; now I'm going to go sit with Camdyn for 15 minutes."  I didn't want them to think I was being unfair!

I don't know if I'll ever get over seeing them like this on oscillating ventilators for over a month.  Now, I look at them walking/taking steps, and I can't help being in complete awe knowing this is where they came from!

I have a toddler!

Camdyn has this walking thing down!  I figured it wouldn't take her long to really get going once she started.  She is still a little wobbly, but she is quickly beginning to prefer walking to crawling.  I think that means I have a toddler!

I still haven't had a chance to get Cade taking his few steps.  I need someone to video while I have him walk to me.  He is feeling much more confident standing without holding on to anything.  I don't think it will be too long for him to really start walking now that he sees Camdyn doing it all the time.  Soon, I will have two toddlers!  I best get my running shoes on.

I'm a bit surprised that they are both walking so early.  I didn't think it would happen for a few more months.  They are 16 months but only 12 months adjusted.  Due to their extremely early arrival, we were led to believe they might not walk until 18-24 months.  At the beginning, walking at any age was a question depending on the severity of their brain bleeds.  Fortunately, they both only had grade II bleeds.  We are so blessed that it has not greatly affected their motor skills.  It has been so much fun lately watching them meet new milestones and watching their personalities develop. 

I hate to say it, but I'm finally getting to enjoy them without constantly worrying about everything (appointments, insurance, oral aversions, feeding struggles, etc.).  I feel really normal now, or as "normal" as anyone else with a pre-schooler and one year old twins!

Austin Children's Museum

My mom and I took the kids to the Austin Children's Museum.  They all had a great time and stayed very busy.  I'm not sure if Nanny and I or the kids were more tired when we left.  We chased them around constantly.  I dressed them all in bright orange 1.  so they would look cute and matching but more importantly, 2. so we could easily spot them!  

My pictures were all taken with my phone.  I dropped my camera in the water at the splash pad trying to get a picture of the kids and now it is ruined.  Hope you enjoy the not-so-great pics anyway.



Laundry Day!

Doing laundry with the twins around and Brenna who tries to help is nearly impossible!  I brought all of our clean laundry into the living room to fold and hang, but here's what happened instead.

Camdyn throws all of the hangers on the floor.  I put them back on the couch, in what I think is out of her reach, and then I turn around to see what Cade is doing.  He is unfolding the folded clothes while Camdyn has managed to reach the hangers and throw them back on the floor again.

Camdyn playing with the wrinkle releaser and throwing more hangers on the floor.

Cade trying to figure out how he can eat the wrinkle releaser.  Notice his hair!  I went to get more clothes from the laundry room.  When I come back into the living room, I notice that both Camdyn and Cade's hair is wet. 

Me:  Brenna, why is the babies' hair wet?

Brenna: I was making them look pretty.

Me: With what?

Brenna:  That spray.  Don't they look pretty?

She had sprayed wrinkle releaser in their hair!  The babies had nice, starchy hair for the rest of the day!

That's not the end of our laundry fiasco scene.  I go to put away some of the laundry before Camdyn could pull it all off the couch again.  When I don't see the babies in the living room, I look around for them, and there's Cade holding the front door open while Camdyn is sitting on the front door step outside!!!  He had managed to stand on his tiptoes, pull the lever door handle, and open the door.  Camdyn quickly made her escape.  I was so proud of him for figuring that out and physically doing it that I couldn't be mad.  I was rather impressed with his skill.  I am going to have to really start watching those two.  They are going to constantly be plotting some way to get into trouble.

Needless to say, the laundry is still not done!