Two Years Ago Today . . .

I don't like April 1 - never have.  I think it's cruel to play tricks on unsuspecting people.  Two years ago I experienced the worst April Fool's Day imaginable.  As much as I would have liked it to be a trick and for someone to yell "April Fool's!", it was no trick; I was in pre-term labor at only 23 weeks pregnant.  I don't believe I have told the story on here of how it happened, so here's how it all began on April 1, 2010.

I had taken a sewing class that morning.  After class, I went to the bathroom. (Sorry if the following is a bit too much information, but you can't avoid it when telling a story like this.)  In the bathroom, I noticed a small amount of discharge.  I didn't think much of it.  It wasn't enough to raise a red flag.  I stopped to get a sandwich from Subway.  When I got back to my car, I started thinking more about the discharge I had noticed earlier.  I went back and forth in my mind deciding if I should call my doctor just to be safe.  I kept thinking they would just tell me that some loss of bladder control is completely typical in a twin pregnancy.  I didn't want to call; I didn't want to be the paranoid pregnant lady who calls for every little thing.  Something - call it intuition - continued to push me to make that call.  Looking back, that decision probably meant more than I care to even fathom.  I can't go to that place of wondering what would have happened had I not made that call. 

I spoke to a nurse, and she told me she would talk to the doctor and call me right back.  I sat in my car eating my sandwich calmly.  It's surreal to look back on that moment.  In that moment, I thought everything was fine.  They would call me back, tell me I was peeing on myself a little, and I would go on about my day and the rest of my pregnancy with no care in the world.  How wrong I would be! 

The nurse called me back and told me I needed to check into Labor & Delivery right away.  "What?"  They were the ones who were overreacting now - not me.  I asked her if I could go pick up my daughter from preschool first.  She said yes, but I needed to go straight to the hospital after that.  I went to pick up Brenna, and we headed to the hospital.  Denial is a gift sometimes.  I didn't know how scared I should be.  I told Brenna that I had a doctor's appointment.  After all, I still figured they were going to tell me it was no big deal and send me right home.

When we got there, I headed upstairs to Labor & Delivery.  At the front desk, I tell the nurse, "I'm here to check in."  "Are you in labor?" she asks me.  "No," I tell her looking at her like she is crazy.  "Why are you checking in?" she asks me, confused as to why I would be checking into Labor & Delivery if I wasn't in labor.  I told her my doctor asked me to come straight to L&D for an exam.  She leads me into an observation room. We turn cartoons on for Brenna.  She sits in the window seat tuned in to the cartoons oblivious to the situation.

A nurse comes in to place monitors on my belly.  She can't seem to find both babies heartbeats on the monitors.  Tears start welling up in my eyes.  She walks out to get another nurse.  They both come back in and adjust the monitors.  Finally, we hear both heartbeats.  Relief.  I'm back to thinking they will send me right home once the doctor sees me.  The doctor comes in and explains she will do a vaginal exam.  She positions herself.  She looks up from above the sheet with the most somber expression on her face.  "You are dilated to a 2.  You will be staying here," she says.  "For how long?" I ask.  "Until these babies are born," she replies.  "You are in pre-term labor.  How far along did you say you were?"  "23 weeks," I say.  She didn't have to say anymore.  I could see it all over her face.  This was bad, very, very, very bad.   That's when I broke down.  Tears that were only welling up before now came pouring down, uncontrollably. 

A very nice nurse took Brenna out in the hallway.  I have no idea what they did.  I tried to call Jim but couldn't get him right away.  I called my mom and attempted to tell her what was happening.  I still don't know how she made any sense of what was going on through my tearful, sobbing explanation.  She was at work an hour and a half away.  She told me she was leaving right away and would be there just as soon as she could.  I can only imagine how horrible that drive was for her not knowing what was happening and wanting to be with me right away.  I called Jim back and told him what the doctor said.  He came straight to the hospital.  Once he and my mom were there with me, I felt a lot better.

I was wheeled into a Labor & Delivery room that evening.  There, monitors were placed on my belly for each baby and one for me, a catheter was inserted, leg compressors were strapped on, an IV was placed, magnesium sulfate was administered, and steroid shots were given.  There was no doubt anymore that this was very serious.  If we had had any doubts remaining of the severity of the situation, those would have been squashed when the neo-natalogist came in for a "visit".  This "visit" consisted of him telling us that if our babies were born today, they would have a zero per cent chance of survival. 

Even as I lay there with monitors, tubes, and drugs, I still thought I would not be delivering the babies any time soon.  I had heard of women going on bed rest and still delivering full-term babies or at least, late-term preemies.  I would be one of those women.  The babies or my uterus had other plans.  They were born just 4 days later at 24 weeks gestation on April 5, 2010.

We feel so lucky that Camdyn and Cade are doing so well.  They sure have come a long way from the zero per cent chance of survival I was first told when I went into pre-term labor.  We were so fortunate to get those 4 days more in the hospital before their birth.  Those 4 days increased their chances of survival to around 40%, and the power of prayer carried them the rest of the way.  This April 1, instead of thinking of that traumatic day two years ago, I'm going to look at my miracle little toddlers and count myself one very blessed mother.

Discouraged

While I am seeing tremendous progress for Camdyn in the area of speech, I still get discouraged often.  It happens when we are around other kids who are near her age.  We were at the park a few days ago and Camdyn wanted to swing.  I took her over to the swings and put her in the baby swing.  Swinging next to us in a big kid swing was a little girl who had just turned 2.  I know I shouldn't compare - blah, blah, blah- but it's just right there in front of me, and it's obvious - my daughter is far behind kids her age.  Her daddy doesn't see it.  He's not around any other 2 year olds besides the two that reside at our house.  He thinks they are doing great, and all things considered, they couldn't be doing better.  However, I am around other 2 year olds, and I hear them speaking in multiple word phrases and some even in sentences like the little girl that was swinging next to us.  Not only was she swinging in the big kid swing, she was talking like a big kid, "Mommy, I want to swing higher - push, push, push.  Wheee!"  Then I see my precious girl pointing and grunting "uhh, uhh, uhh" at the swing.  After I encourage her to say swing (mouthing SWING really big), she manages to say "seen" and I am so proud that she attempted the word and came pretty close, but I am also sad.  Why does it have to be so hard for her and so easy for this kid next to her?  I hope you all don't think I'm terrible for being so honest, but those of you who understand know how much it hurts.

She has developed a bigger vocabulary over the past few weeks.  She will attempt more words; however, very few of her words are complete words.  She says "ca" for cat, "do" for dog, "ba ba" for bottle/drink, "p" for up, etc.  I know it will come with time, but she will have to work harder than other children.  Our speech therapy MESS is still up in the air.  It looks like my insurance does not cover speech therapy, and the therapy office continued to let us come every week for nearly a year racking up a huge bill!  It really ticks me off more than I can write about here and still remain tactful. 

I am going to try to get a re-evaluation with our early childhood program for speech therapy for Camdyn.  I don't know if she will qualify or not or if I will even like the therapist they send us if she does qualify.  We haven't had the best luck with some of the therapists they have sent in the past.  I will probably still pay out-of-pocket for private therapy with the therapist she was seeing because I liked her a lot; I just don't like the stupid office staff that couldn't figure out we weren't covered even though they told us we were!  So, here we are two years down the road in our micro-preemie journey and while things are much, much better overall, there are still bumps in the road and hurdles to cross. 

Cade's surgery

Once again, I'm behind on blogging.  Cade's "g-tube boo boo" surgery (as Brenna says) was last week at Dell Children's Hospital.  We went in at 7 AM on Wednesday morning for his surgery at 8:30 AM.  I love how Dell has a Child Life Specialist that comes and talks to the patient before surgery.  A very nice lady came and talked to Cade and showed him pictures of what the surgery room would look like and pictures of the nurses and doctors on her iPad.  The idea is to get them more comfortable with what is going on and where they will be going.  I have to digress here - Imagine a Child Life Specialist talking to a micro-preemie before their NICU stay, showing pictures of the NICU on their iPad.   "So you will be whisked away to the NICU.  You won't be able to say hello or goodbye to your mommy and daddy.  We will then shove a tube down your throat so you can breathe.  You'll need all these machines to breathe and eat.  You will hear constant beeping of monitors for your entire stay." 

Back to Cade's surgery - he happily went with the nice lady.  The surgery lasted about an hour.  Jim and I were called back to the recovery room where we found a very unhappy little boy.  It was really heartbreaking to see him like that.  He was squirming and kicking and crying and moaning.  It was awful.  I asked the nurse for more pain meds for him.  Once she gave him more morphine, he calmed down.  In the picture below, he is resting with a permanent frown after getting morphine.  So sad.

Once we got settled in our room, he was much more comfortable.  I pretty much held him all day and cuddled him.  I did not enjoy the fact that my son needed surgery, but I did enjoy uninterrupted cuddles all day.  He did too.  Look at that sweet face!

After all day in the hospital room, we were ready to get out of that room for a while.  We took Cade on a wagon ride around the hospital.  He was still on the IV, so we had to pull the IV pump along.

It was so sad and strange to see Cade like this because he typically is an energetic, little tornado destroying everything in his path.

He played with a few toys in the playroom down the hall.

By the next day, he was so much better.  I woke up to find him standing up in his crib playing with the IV bag.  He looked at me and said, "Wha tha?" (What's that?) . . . "wa wa?" (water?)  I had to laugh.  That was the first time he had used the phrase "What's that?" 

We went for another wagon ride, but this time we didn't have to drag along the IV pole.   At Dell, they have this cool ball maze at the entrance.  Cade was mesmerized by it. 

I knew he was back to his normal self when he wanted to get out of the wagon and splash in the waterfall. 

Once we left the hospital that afternoon, you would never know he had just had surgery.  He was running and playing when we got home.   He didn't even need any pain medication. 

I have to throw this picture of Camdyn in too.  Lately, she has been making a "cheese" face when I try to take a picture.  It is so funny!  She thinks she looks really cute like this, and she would be right; it's just not what I'm aiming for.

Cade's upcoming surgery

Cade will be having surgery on Wednesday at Dell Children's Hospital.  He is having a scar revision done and internal closing of his g-tube site.  The surgeon said he will close up any openings below the skin when he does the surgery.  He told us Cade will have to spend one night in the hospital for observation, and they will be administering pain medications through the IV.  I'm not looking forward to spending the night in the hospital, but I am happy he is having the surgery.  It feels very final, like we are closing that chapter in our preemie journey book.  I am so thankful that he now loves to eat because I know feeding issues are an ongoing challenge for so many former micro-preemies.

Please keep Cade in your prayers.  Pray that everything goes as planned and we experience no complications from the surgery.  Pray for wisdom for the surgeon, and pray that Cade does not experience a lot of pain.  Thank you all for continuing to pray for us.

Preemie Playdate

After we left the NICU, I started a group for preemie moms to connect.  We go to get coffee or dinner once a month.  Over the last year, our little group has really grown.  I think we all look forward to that one night a month to go out, take a break, and talk to other moms who can relate to our struggles, offer advice, or just listen.

We had all been talking about having a playdate for a while.  Some of us had not even met each others' kids even though we knew their whole medical histories (and with preemies, those medical histories are extensive).  I hosted our first preemie playdate at my house last week.  We had eleven toddlers in the house plus my older daughter, Brenna.  It was a bit chaotic but so much fun. 

Lunch time was fun trying to seat 11 toddlers!  Both triplets mommas came prepared with portable chairs.

My kids, along with Miles, used the little table so our other twin friends could use our chairs.  Camdyn and Cade really thought they were big kids at the table.  Miles' dad takes care of him during the day and works at night, so we were glad he could bring Miles to join us.

A Couchful of Preemie Miracles!

We tried to get a group shot, but that's pretty tricky with this many little ones.  This picture contains two set of twins, two sets of triplets (minus one who was sick and had to stay home), and three singletons.  Three of the babies in this picture were born at just 24 weeks (my two included).  If you combine the birth weights of all of these eleven kids (not including my full-term Brenna), it is approximately 30 pounds.  Compare that number to eleven full-term babies which would be roughly 80 pounds.  Amazing, right?  All of these kids are truly amazing.

Brenna's 1st Dance Competition

Brenna had her first dance competition last weekend.   She and her class did great.  They all went out on the stage, remembered their dances, and left happy.  I would call that a success for 4-5 year olds.  She enjoyed dancing on the stage, but her favorite part of the day was getting a trophy at the end.

Mommy and Brenna

Brenna with a couple of the girls in her class

Waiting in the wings to go on stage with their cute ballerina bears.  I think Brenna looks so grown up in this picture.

Brenna showing off her new trophy.  She was so proud!



My New Job Title

When we were discharged from the hospital with our micro-preemie twins, we were given lengthy instructions on how to care for our babies including how to feed both of them through tubes.  We were trained on how to insert the ng-tubes, how to use the feeding pumps, etc.  We were also given numbers to call to begin therapy services as well as a long list of doctors and specialists' numbers to schedule follow-up appointments.  Eventually, they let us take our babies home, and from that moment on, I became a lot more than a mother; I became a secretary, nurse, speech therapist, physical therapist, occupational therapist, developmental specialist, respiratory therapist, social worker, dietician, insurance case manager, and bus driver (to transport them to all their appointments). 

After nearly two years of learning about all of these fields, I didn't think I would be taking on any more new jobs pertaining to the care of my twins.  I was wrong.  My latest job description that no one in the NICU forewarned me about is that of medical coding specialist.  The speech therapy office called me on Friday to let me know that ALL of Camdyn's speech therapy visits from Sept.-Dec. of 2011 and ALL of her speech therapy visits so far in 2012 have been denied by our insurace.  What?!?  Our phone conversation went something like this:

"Are you telling me I owe you over $2000?"
"Yes, ma'am.  Whatever your insurance doesn't pay, you are responsible for."
"And, why couldn't you tell me this 15 visits ago, as in last year sometime?!"
"Well, I was on maternity leave and someone else was handling your account."
That's not my problem, and I wouldn't call 15 denied visits handling my account. (what I'm thinking)

After 3 calls to my insurance company, the first 2 of which I was disconnected, I finally spoke with someone who could shed some light on the situation.  This was only after I began yelling at that stupid automated voice.  It's pretty funny, albeit aggravating, to yell at the automated voice.  She responds, "I didn't understand your response.  Please say what you are calling about."  I suppose it's better to take out my frustrations on the automated voice than a real person.  When I finally spoke to someone with a brain, she helpfully figured out that code 315.3 which means expressive speech delay is not covered by my plan; however, code 781.3 which means lack of coordination is covered under the plan.  I thanked her and then sent a message to the therapy place reporting my finding.  I have no idea why this was my job to do at all.  Why couldn't the medical billing people at the therapy office figure this out on their own? 

Aside from the frustration at people not doing their job and me having to do it for them, I don't understand why therapy wouldn't be automatically covered for micro-preemies anyway.  It's not hard to believe that a child who was born like this might need a little help:

Maybe I should just send them this picture.  It's frustrating that I even have to fight at all to get them the help they need .  Since Cade has Medicaid right now from having a g-tube, he gets all the services he needs.  Camdyn, on the other hand, is only covered under our insurance plan.  Health care needs huge reform.  Does it make any sense that Cade qualifies for as many therapy visits as he needs, but Camdyn can only receive 20 speech therapy visits per calendar year because that's what our insurance has decided she needs and then I have to prove that she needs those?  One of the first two insurance reps I spoke to told me she had to be diagnosed with a "congenital abnormality."  Well, I wouldn't define being born at only one pound and needing a ventilator for 5 weeks to breathe as "normal".

Hopefully, we (as in mostly me) will get this all sorted out soon so she can continue with her speech therapy.  She is making great progress. 

Brenna's Rapunzel Party

Brenna celebrated her 5th birthday with a Rapunzel party at our house with a lot of friends.  I had so much fun planning her Rapunzel birthday even though it took up all my time.  I made enough yarn hair braids for each of her friends.  It took hours to braid all of these braids, but they looked so cute on all the little girls.   When each little girl arrived, she received her Rapunzel braid.

                    

We tied a bunch of yellow yarn from the playhouse tower to look like Rapunzel's hair coming out of her tower.

I made the birthday cake using a Rapunzel topper and two round layer cakes stacked.  I stuck one of Brenna's Rapunzel figures on top and piped yellow icing all the way around like her hair cascading down.  I saw this idea including putting it in a frying pan (Rapunzel's weapon of choice) on Pinterest.  I wasn't so sure it was going to turn out, but I thought it turned out really cute.

Daddy even got into the Rapunzel theme.  I told him I needed him to make some bread sticks but that he would have to braid them first.  It took him a while to remember how to braid, but once he got the hang of it, he was busy braiding.

our own tiny Flynn Rider and baby Rapunzel

I made this royal kingdom banner to hang in our kitchen.

We also posted Wanted: Flynn Rider posters around the house and on the playscape.

We also made paper lanterns and went on a treasure hunt to find the lost crown.  Brenna told me it was the best birthday ever, so all that braiding was worth it!  Now, it's time to start planning for the twins' second birthday.  Where is the time going?