Quality of Life

Someone on Facebook posted this link to a tragic story in the news.  A couple sued their doctor and ultrasound technician after not being told that their son would be born missing 3 limbs.  The couple stated they would have chosen an abortion, and they sued for "wrongful birth".  They won the lawsuit.  You can read the story here:

http://www.thenewamerican.com/usnews/health-care/9059-couple-wins-qwrongful-birthq-lawsuit

I was surprised that of those polled on the site, 75% thought  a “wrongful life” lawsuit is not morally justified while only 25% thought it was morally justified.  I began to think about that and came to the conclusion that the 75% of people who thought it was not morally justified were representative of the 3/4 of the population who most likely have never had to truly think about quality of life and what that means for your child.  I fall in the 25% who have unfortunately had to turn the thought of "quality of life" over and over in your head until you feel dizzy, nauseous, and sick.

I don't know what the right decision would have been in this couple's case, but I do believe they had the right to make their own decision based on information they should have been given.  I don't agree with abortion, but just as a matter of argument, women choose to end perfectly healthy pregnancies every day.  This woman should have been given the opportunity to assess her child's quality of life, and make whatever decision she saw fit.

This story reminded me a lot of a friend of mine who I met in the NICU.  She was told that her baby would die in utero.  Then after several ultrasounds, the neonatalogists told her that they thought he had a chance.  He was born at 27 weeks, but was far worse off than most 27 weekers due to severe intrauterine growth restriction.  He ended up spending a year in the NICU and PICU, and sadly, passed away at home under hospice care.  She has told me before that she wishes he would have passed in utero rather than having to be subjected to all the pain of breathing tubes, spinal taps, blood transfusions, IVs, etc.  Although, she loved having the chance to meet her son, she selflessly says she would have rather never had the chance to meet him and he not have had to suffer.  If she had read the article above, I know she would have been in the 25% who thinks there is such thing as a wrongful birth.  

It may seem contradictory because while I say that, I am so thankful that the doctors were able to save my babies.  I've been told that the head neo-natalogist came into my recovery room and asked me, "How hard should we work to save these babies?"  I am told that I said they should do everything they can.  I do not have any recollection of this conversation.  I was drugged, had just endured an emergency c-section, and was in major shock.  I'm surprised they would have even asked me considering the state I was in.

During the first few days and weeks while they were struggling to live, I found myself praying an unthinkable prayer.  When we got news of brain bleeds and white matter in the brain, I prayed, "Dear God, if they are not going to have a good quality of life, please take them.  I give them back to you.  Although, it's going to kill me inside to lose them, I do not want them to suffer.  I do not want them to go through this life if they are not going to have a good life.  I pray that you heal them completely and give them strength."  Have you ever prayed for God to take your child?  If you have, then you know what it's like to contemplate "quality of life" for your child.

One of the worst days of my life was when I was told that Cade had bilateral vocal cord paralysis and would likely need a tracheotomy for life.  I remember holding him so tight against me sobbing uncontrollaby thinking that if I held him close enough, the doctors couldn't have him, he would be safe, and I would never have to hear their grim statistics again.  I understand now that he could have had a full life with a tracheotomy, but at the time, it felt like a death sentence.  I had handled so much bad news up to that point - they could be blind, they could be deaf, they could have cerebral palsy, they could have brain damage.  That was a breaking point for me during the NICU experience.  I have never felt more devastated than I did at that time.  We were relieved and thankful when we learned this was an inaccuarate diagnosis.

We are incredibly blessed that our twins escaped their rough beginnings relatively unscathed.  We've had our challenges and still have challenges to face, but overall, I know they will have a good quality of life, and that's all I ever wanted for any of my kids. 

I know what it's like to face the question of  "quality of life" for your children.  Most parents, fortunately, do not ever have to even think about it.  I would say to the 75% of people who think a "wrongful birth" lawsuit is not morally justified they should count their blessings that they are not in those people's shoes.  I would venture to say they may have a very different opinion if their own child's "quality of life" was in question. 

What better way to sum up my point than with a quote from To Kill a Mockingbird.  The wise Atticus Finch once said, "You never really understand a person until you consider things from his point of view - until you climb into his skin and walk around in it."

Baptism - Part 2

Camdyn and Cade's baptisms went great last weekend.  It was a wonderful celebration, and the church was full of our friends and family.  The pastor nicknamed the twins the "well-prayed for babies," which was an accurate statement.  The congregation had prayed and prayed for our babies and followed their progress along the way. 

Camdyn and Cade were very-well behaved during church, and they did not cry at all when they were baptized.  They began to get a little fidgety towards the end of church, but a few Puffs solved that.  After church, we had a reception in the fellowship hall.   Camdyn and Cade enjoyed socializing with everyone, and they especially enjoyed eating cake.  

The twins were actually baptized with water from the Jordan River.  Our pastor brought water back with her from her trip to the holy land.  Isn't that so cool?

Their baptism outfits were made from the material of my wedding dress.  Camdyn wore the dress I had made from my dress when Brenna was baptized.  Cade's vest and bow tie were made from my wedding dress.  Now, we will have a girl's and a boy's baptismal outfit that we can pass down in the family.  I tried to go get professional pictures of the twins in their adorable outfits today, but they weren't really in the mood.  I got cute pictures of each of them separately but not together.  I am going to schedule another appointment because I really want a picture of them together.  It's extremely hard to get a cute picture of them together now that they are so mobile!

 "Mom, if you think I am going to wear this hat, you're crazy!"

me and my sister with the twins

Camdyn paying close attention to the pastor

Cade paying close attention and following along in the bulletin (did I mention he is really smart?)

Camdyn being baptized

Cade being baptized

Could he be any more handsome than this?

Brenna got a new stuffed animal from Aunt BB.  As you can tell, she loved it!



Musical Babies

I decided to start a Music & Movement class at my dance studio.  I had checked on music classes for them, but everything was so expensive to have 3 kids take the class.  They also wanted one parent per child (not easy for a mom of multiples), and they told me Brenna could sit on the side.  I'm sure that would have worked out just great! 

After hearing all of that, I decided I should start my own class.  I have a large studio with plenty of props - instruments, mats, wedges, balance beam, hoops, balls, parachute, etc.  I have really enjoyed creating the curriculum and activities for the class.  We sing songs, play instruments, free play on the mats, dance with hoops or balls, blow bubbles, and play with the parachute.  I am able to incorporate some of the activities from our long list of things we are supposed to do with them from therapy.  Each month we are going to have a theme, and all the songs, books, activities, and play will be based on the theme.  Last month, our theme was animals, and this month our theme is going to be transportation.  I can't wait to get a new set of songs and activities together for our new theme.  The babies have fun in class, and our class is growing.  We now have 10 kids in the class.  And, the best part is that I am in control of keeping things clean and sanitary.  I don't have to worry about the toys being sanitized because I do it. 

Below Cade is trying to play his cousin's trombone. 

Brenna taking a turn on the trombone.

Cade trying to eat the trombone.

My girls "playing" the piano before church.  (okay, maybe not playing - more like banging!)



Frantically Scrapbooking

I'm taking a little break from the frantic scrapbooking I have been doing this week to write this post.  I realized I had not scrapped since the babies were 3 months old and still in the NICU.  I had prepared their books up to that point to show at my baby shower.  Then the babies came home, we had to feed them every 3 hours around the clock for a year, take them to a zillion appointments, and well, that didn't leave much/any time to do anything extra, like scrapbooking.  Now, I'm playing major catch-up because I want to have their scrapbooks current for their baptism this weekend. 

I had purchased several stickers when I was still pregnant.  I have 3 unopened packages of pregnancy stickers.  They have cute stickers of big pregnant bellies that say things like "belly beautiful" and "patiently waiting" and "overdue" and "due date".  I guess the scrapbook companies don't think pre-term labor stickers would be very popular.  I needed stickers that said "16 weeks early" and "not ready yet" and "half-baked".  You can see why those wouldn't be popular!

Aside from the pregnancy stickers, most of the baby stickers aren't even applicable.  "Bundle of Joy" doesn't seem to fit when you are looking at your 1 lb baby struggling to live.  I did later use that sticker at about 6 months old.  You can't use the sticker "he's finally here" when he shouldn't be here for another 16 weeks.  When exactly do you use the sticker "newborn baby" for a micro-preemie anyway?  When they are born or when they should have been born?  One package of stickers says "Who came to visit?"  Well, we were only allowed 4 visitors in the NICU so the list wouldn't be too long on that one.

Then you have a slew of stickers you can't use because they are just so understated to the enormity of your situation like "tiny fingers and tiny toes".  No one knows "tiny" until they have seen a 23/24 week baby.  I didn't use the sticker "love at first sight" either because sadly, I don't think those were the first words that came to mind.  The order of my thoughts went more along the lines of- shock, disbelief, sadness, desperation, pleading with God, mixed with how much I loved them and needed them to live.

I just searched online and found that they do make NICU stickers (pictured above).  I should have searched ealier because I would have probably used a few of these.  Although, I have to say that it does seem a little strange to make a cute sticker about getting a blood transfusion or to make a sticker that says "bradycardia" with a heart for the "a" like it's a pleasant, happy thing.  Come on, scrapbook sticker makers; it's when a baby's heart rate drops significantly and scares the mother half to death.  The cutesy heart really seems out of place. 

 

I will get off my scrapbooking rant now so I can actually get some scrapbooking done!

Spa Trip

This past weekend I fianlly got around to using the gift card I won in the "Mother of the Year" contest (http://cedarparkcitizen.com/2011/04/29/mom-of-the-year-michelle-hensel/). You would think I would have run right out to use it, but somehow there was never time. I wanted to include my mom, sister, and mother-in-law, Kathy, in the spa trip because even though I was given the title of mother of the year from the newspaper, I know I couldn't have made it through that first year without them (and my husband, of course).  He's not a spa person, so he and my father-in-law stayed home to babysit while the girls went to the spa!

We had so much support from our family and friends through the babies' stay in the NICU and beyond, but I couldn't take everyone to the spa.  I wish I could repay all of the people who helped us out so much because saying thank you is inadequate for the support we received.  Anyway, these women were instrumental in saving my sanity throughout that insane first year.  My mom watched Brenna so I could go to the NICU, cleaned my house, brought me food, sat by my side in the NICU several times, and so much more.  No one would want to read the tremendously long post I could write about how much she helps us.  My sister made sure that I was okay - when everyone else asked about the babies, she asked about me (not to say, she didn't fall madly in love with our precious twins from the first time she saw them).  And, I always say I won the "in-law jackpot".  My in-laws came up EVERY weekend for 8 months from an hour and a half away to help us out and still help us tremendously!  Jim's dad is not a spa person either so he wasn't too upset that it was a girls' trip.

Now on to the spa day.  Lake Austin Spa is ranked #5 top spa in the world from Travel & Leisure magazine, and it is on several other top ten lists.  Needless to say, it was awesome.  It is nestled into lush gardens on lakefront property.  Just being there is relaxing.  We hung out at the pool for a while.  While Mom and Kathy got their river stone pedicures, my sister and I took a dip in the hot tub followed by the steam room.  (She's a wimp though and can't handle the steam room long! ha sis)  We then showered and headed off to get our river stone pedicures.  Mom and Kathy then went up to relax in rocking chairs on the balcony overlooking the beautiful grounds.  We all enjoyed our spa trip very much and decided one of us needs to win the lottery so we can go  back.  Even though we thoroughly enjoyed it, we didn't want anyone to have any more traumatic experiences that would enter us into any contests to win a spa gift certificate in the future. 

                                                                                                                                         

my sister, Mom, and Kathy

me and Bridget by the pool

Kathy and Mom relaxing by the pool

Bridget and I relaxing by the pool

the view from the balcony

me on the balcony overlooking the grounds

Bridget, Mom, and me on the walkway near the lake



Developmental Tests

Camdyn and Cade had their yearly review for Early Intervention.  They did a long test which measured their gross motor, fine motor, social, expressive communication, receptive communication, and cognitive skills.  They both did so well that they will no longer qualify to receive services through ECI.  They scored anywhere from 12-19 months in all areas.  Most of the areas were 13-15 months which means they are functioning at their adjusted age (right where they should be) and slightly higher. 

Camdyn did score lower at 11 months in receptive communication (what she understands); however, in expressive communication (what she can communicate), she scored above her adjusted age at 15 months, so they think the lower score was probably not an accurate measure.  She would qualify in that one sub-area of communication, but I decided not to do services with ECI because we are already getting an hour of private speech therapy for her weekly and they would only be able to provide an early interventionist rather than a speech therapist twice a month.  I'm sure her receptive score is actually higher; she's just hard-headed like the rest of the women in her family.  She knows/understands what we are telling her; she just chooses not to do what we want her to do!

Even though they no longer qualify with ECI, we will continue our private therapies as we have been doing.  It's obviously working, and they still have a lot to accomplish.  They both are currently getting one hour each of speech, occupational, and physical therapy each week.  Cade will continue with this plan for as long as he still has Medicaid.  Camdyn; however, will have to decrease her visits once January rolls around and our insurance starts over.  She is allowed 20 visits of each type of therapy per calendar year.

They also scored well on their NICU follow-up clinic tests showing average to superior scores.  Average means they are functioning at their adjusted age of 13 months, and superior would mean they are functioning at their chronological age of 17 months.  On both tests, they both scored the highest on cognition with scores equivalent to 15-18 months!  That is absolutely incredible!  After worrying about brain bleeds and the developmental effects of the steroid dexamethasone they were given to wean off the ventilators,  I feel incredibly blessed that they are able to use those smart little brains of theirs to make huge messes all over my house!

Double Trouble

Here's an example of why I can't get anything done, my house is never clean, and I can't get anywhere on time.  Scenarios like this happen at least a dozen times a day.  One toddler can make a big mess, but put two toddlers together and let the plotting begin!  I swear they plot out how they can make the biggest mess together all the time.

Cade:  "Oh, Mom, are we not supposed to be doing this?" (Camdyn not even noticing I'm there)



Camdyn: "Oh, hi Mom - look what I have!"

Cade thinking 'Mom's busy taking pictures; I can unroll some more.'

Cade: "Here sister, want some more?" 

Camdyn: "Look Mom, it can make a hat!"

Camdyn: "Here Mom, do you want some?"

They are definitely double the trouble, but also double the fun!

I had to include this random picture at the end.  I took this picture from my back deck this afternoon.  Isn't that an amazing sunset?



Hometown Weekend

Last weekend, we went back to our hometown of La Grange to watch our nephew play football.  Unfortunately, they didn't win, but we still had fun watching the game.  Aunt April bought Brenna this cute "Lil Lep" t-shirt and hair bow.  The babies stayed home with Grandma and Grandpa.

On Saturday, we met my dad's side of the family in Caldwell for lunch.  Then we headed to the Kolache Festival for a while.  Brenna, and her cousin Colin, had fun riding this little train.  Again, the babies stayed home with Grandma and Grandpa.  The air quality was dangerous due to all the Texas wildfires for the babies to be outside, so they had to miss out on the fun.  I have recently noticed that Camdyn's favorite word to say is "bye," and Cade's favorite word is "go."  I just put that together and realized they are trying to tell me something.  I imagine Cade telling Camdyn, "I'll say 'go' and you say 'bye' and maybe Mom will get the hint that we are tired of being trapped inside!"

Brenna enjoys being a country girl when we go visit Grandma and Grandpa.  She loves to ride on this little buggy.  Notice how dry everything is around here.

On our way back home, we traveled through Bastrop.  Here's what most of it looks like now.  Prior to the massive wildfire that burned 1500 homes, it was full of beautiful, lush pine trees. 



Brenna's 1st Day of Pre-K

Last year, Brenna wasn't able to go to school.  We all made sacrifices for the babies - Brenna included.  We couldn't risk having her catch the flu or RSV and bring it home to the babies.  She started back to school this past Tuesday and will be going on Tuesdays and Thursdays.  This will work perfectly since the babies have therapy on those days.  I'll drop Brenna off at school and then take the babies to therapy.  It's nice to be getting into a routine again.  Although gettting the twins and their double stroller out multiple times in one day, is not an easy task!  It goes like this -load up to leave the house, get the double stroller and twins out to drop Brenna off, load back up for therapy, get everything out to go to therapy, load back up, get the babies out at home to take a quick nap, load back up to get Brenna, get everything out to pick Brenna up, load everyone back up to go home, unload at home - finally!)  You get the idea.

Brenna was so excited to go to school.  She walked around all morning wearing her Tinkerbell back pack, and asking if we could leave yet.  So cute!

Brenna at the front door ready to go.

Brenna in her classroom.  She was all smiles (at first).

Then came the tears, but after her teacher talked to her, she decided she was going to have fun.

Then the smile returned.

She began coloring, and I made my way out of the classroom holding back my own tears realizing that my little girl was growing up.

I'm so happy that Brenna is back in school and now gets to be a normal little girl instead of the little girl that asked me over breakfast a while back, "Which doctor are we going to today, Mommy?"  Luckily, our doctor appointments are much less frequent (even if our therapy appointments are very frequent), and my pre-schooler is in school!  It's going to be a much better year.



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!