Monday, May 23, 2011

Cade's visit to the ER

Last night, I took Cade to the ER.  Surprisingly, as a former micro-preemie, this was his first trip to the ER.  He had been coughing all week, but I thought it was just congestion.  I tried to make an appointment on Friday afternoon at the pediatricain's office, but it was too late and we weren't able to get in.  On Sunday, my sister and brother-in-law were watching the kids.  When I went to pick them up, they told me that I should maybe take Cade to the ER because he had been coughing non-stop for the last 30 minutes. 

As I was questioning whether I should bring him or not, he started back up.  He was coughing and gasping for breaths.  He doesn't really have a very effective cough because of his paralyzed vocal cord.  He was coughing so violently that his face was turning red.  I jumped in the car with him and rushed to the ER.  Horrible thoughts were racing through my head - not enough oxygen to the brain can cause brain damage, hope it's not RSV, hope it's not pneumonia, this is probably causing damage to his lungs, he needs to be okay, etc., etc., etc.  As these horrible thoughts ran through my head, the memories of holding Camdyn's limp body and willing her to breathe on her trip to the ER started popping up again.  The whole time Cade is violently coughing, wheezing, and gasping for breath in his car seat. 

When we got there, I ran in the doors with Cade.  I turned into 'crazy, too long in the NICU mom'.  At the registration desk, I began to rattle off, "I don't have time to check-in.  He needs to be seen now.  We need a pulse ox.  You need to check his O2 sats now; he may need oxygen.  He's a former 24 week preemie."  That's all it took to be seen right away.  Those are the magic words "24 week preemie" and you are treated first-class.  They really were awesome.  They had the pulse ox on in no time.  I first saw the sats at 81, and quickly said, "get him some oxygen, put a cannula on him".  They told me it takes a minute for the numbers to register.  I'm sure they were thinking I was crazy and just needed to calm down.  Thankfully, the numbers did go up.  His sats were just fine.  Then a doctor and the respiratory therapist came in to listen to his lungs.  The doctor commented that he sounded like an old smoker which is a pretty accurate description.  They gave him a breathing treatment that worked wonders.  They followed up with blood work, nose swabs, and a chest x-ray.  Fortunately, all the tests came back negative - no RSV and no flu.  They think it is an upper respiratory infection, so we are just continuing with the breathing treatments. 

I was glad that we were discharged and got to spend the night at home.  Wednesday night we spent the night in the dreary nursing home; I didn't want to spend Sunday night in a hospital.  I am so relieved that this was nothing serious.  We did receive some fantastic news from our ER visit.  The doctor, after reading the chest x-ray, said, "The x-rays look surprisingly good.  It looks like any kid's normal chest x-ray" meaning not what he would expect of a former 24 week micro-preemie's lungs.  Awesome!  That news makes me so excited.  

Jim asked me what I expected his lungs to look like.  I said, "Well, I don't know but not normal".  Then I asked him how he seems to forget their background as micro-preemies.  He told me that maybe I needed to work on forgetting a little bit more because they are "normal".  He might be right, but this mama bear isn't taking any chances after all we've been through.  After all, what's another $150 co-pay when you have already spent thousands?  I think the saying "better safe than sorry" is a really good rule to live by.

Thank you God that Cade's infection is not serious and that it is not RSV or the flu.  Thank you for a normal chest x-ray!  I could spend my entire day thanking you for all the gifts you have given us.  You are an amazing God.  Amen. 

Friday, May 20, 2011

They are Turning into Little People!

I have had so much fun with the babies and Brenna lately.  We have been doing so many normal things like going to the park, going to the splash pad, going out to lunch, going to the bookstore, etc.  It is a lot of work to get everyone ready to go out and do things, but I am enjoying it so much after not being able to go anywhere with them all winter long. 

You hear people say they wish their babies could stay small for longer.  Not me.  Since the moment they were born, I wanted them to get big and healthy.  It feels like they were infants for so very long - much longer than a year.  I am thrilled that they are turning into toddlers and becoming little people!

Their personalities are really developing.  Camdyn is a go-getter, can't-sit-still, on the move kind of gal, but she is starting to get separation anxiety when mommy goes into another room.  She doesn't want to be held and cuddled; she just wants to know that I am nearby.  Cade is mostly laid-back and definitely a cuddler.  He loves to be held.  He would like to be held all day if I had the time.

Cade has made a lot of progress with motor development.  He learned to crawl two weeks ago, and he has really mastered it now.  He can crawl all over the house now.  He is almost able to pull up on things.  He gets to his knees with one foot up, but doesn't seem to have either enough strength or coordination yet to get all the way up.  If we stand him up though, he can stand and play for a long time before falling down.  Cade can now wave bye-bye, do pat-a-cake, give high fives, and the best part, give kisses.  He says "dadadadada" and "mamamama" and we think he does it when he wants us.  It is so awesome to see him interacting with us.  It really just makes me so happy that they are both progressing so well.

Camdyn is now pulling up on everything and even cruising.  She just started standing and holding on to the couch or toy table with only one hand.  She has good control and balance.  Camdyn has a lot of new "tricks" as well.  She can wave bye-bye, do pat-a-cake, and give high fives too.  She is not so great at giving kisses because she can't sit still for that long.  She loves to shake her head no also, usually when you are trying to feed her.  About a week ago, she completely surprised me by saying "buh-bye".  I really couldn't even believe it at first.  She also says "mama" and "dada".  I think she is trying to say other words too.  I figured speech would be very delayed because of their extreme prematurity.  A nurse in the NICU told us, "Don't tell her she's little; she doesn't know it."  That has definitely been true for Camdyn.  It's really cute when you ask her to do "pat-a-cake" because she claps her hands together.  Then she starts going through her bag of tricks and waving bye-bye, giving high fives, and shaking her head no.   

Here they are standing and playing.  Look how much taller Cade is than Camdyn.

Here Camdyn is waving hi to her brother but it looks like she is grabbing his ear.

Like I said, the babies are into EVERYTHING!  I opened the fridge for just a second and there they were.  Notice that Cade thinks he needs some wine for breakfast.

Here's a family shot when we took the babies to church for the first time on Mother's Day.  It was neat to finally be able to take them so the congregation who prayed endlessly for them could meet them.  Thank you for all your prayers.

Finally, I had to include this adorable picture of my big girl.  This is before dance class.  Isn't she a beauty?

Thursday, May 19, 2011

Our Crazy Night in the Nursing Home

We spent the night in a nursing home last night with Cade.  You might be wondering why.  Where do I start?  Ever since we left the NICU 9 months ago, I have been asking, searching, looking for ways to get Medicaid benefits.  We were told in the NICU that all micro-preemies get Medicaid for their first year, but once we got home, we realized that was not the case.  Our social worker in the hospital was completely useless which looking back ended up costing us thousands of dollars that we should not have had to spend.  We should have been set up with Medicaid for both babies since they both came home "medically dependent" with ng tubes and with their long histories of heart surgery, mechanical ventilation, chronic lung disease, and brain bleeds.  Instead, we spent over $16,000 last year in medical bills.

It wasn't until I vented about insurance here on this blog that I found out about MDCP - Medically Dependent Children's Program  (Thank you Renita!).  In my books, MDCP may otherwise be known as "top-secret, jump through hoops and hurdles, ridiculous program."  It made no sense to me that if you were poor enough your child could get all the therapy he needs, but if you have jobs and pay your insurance premiums, your insurance gets to tell you how many therapies your child needs.  I called the number to get on the MDCP list.  It can take 5-10 years to move to the top of the list, so you have to say that you want to do the Rider 28 Waiver.  After several weeks, a case worker and nurse came to the house, asked all about his medical history and looked at Cade.  After several more weeks, they finally called to say he qualified.  Our next step was to stay in a nursing home for a night as part of the Rider 28 Waiver which then moves you to the top of the list.  Are you lost yet?  Well, I am.  It really doesn't make any sense, but if that is what we had to do, then so be it.  After months in the NICU followed by two more weeks at Dell - one for Camdyn and one for Cade, I figured one night in a nursing home was easy.

When we arrived at the nursing home, I took one look at it and was scared to go in.  It looked to be at least 50 years old, kind of run-down, and kind of prison-like.  A huge fence circled the premises and there were no garden areas.   I grabbed our bags, put Cade in the stroller, and ventured inside.  The inside was no better.  It looked old and unkempt.  The staff was all very friendly though.  A nurse showed us to our room.  It was no better.  The only word I can think to describe it is dreary.  I kept thinking to myself, "OK, I can do this.  It's only one night." 

They got us registered and took a quick look at Cade.  Then they told us we could leave and come back around 9 PM.  It was only 4 PM at this time.  I took Cade to a park down the street where he played for a while until Daddy got off work and met us back at the nursing home.  We fed Cade his dinner in the common room and all the ladies just loved him.  They all sat around just watching him eat and laughing at him when he made silly faces.  He loved the attention.  It was really cute.  Then we went to a burger joint nearby for dinner.  When we got back to the room, we watched a movie on our computer.  At this point, I was thinking, "Hey, this isn't so bad.  We'll go to sleep and get to leave in the morning."

Sleep was not to be had at the nursing home though.  A railroad backs up just a few feet from the nursing home, and I swear a train came through at least four times throughout the night.  It came through with a vengeance too blaring its horn and making the room vibrate.  It seemed like the train might jump the track and come right through the room; it was that close.  Then we kept hearing a lady saying, "Helllllooooo, Hellloooooo, Helllooooo Someone, Helllooooooo."  At first, I thought she was walking the halls looking for some company.  This went on for about 15 minutes.  Then we hear her start saying, "Helllllp, Helllllp, . . . Helllp Me."  I still thought she was probably just crazy and the nurses weren't responding to her because maybe she did this every night, but I decided to get up anyway.  I just wanted her to be quiet.  I walked to the nurses station down the hall to tell them someone keeps saying, "Help me."  A nurse quickly went to see about her, and I overheard the lady telling the nurse that she couldn't find the call button and she needed to go the bathroom.  Then the lady said, "Thank you sweetheart" to me from her room.  My heart broke then because I could have gotten up a lot sooner.  I just didn't realize she was actually calling for help when she was saying hello.  After I got settled back in and almost to sleep, it was time for another train to come by!  I have no idea how the residents get any sleep.  

Then it became freezing cold in our room.  Earlier in the day, we thought maybe there was no AC.  We had a fan on and the window open.  A nurse came by to check on us and noticed we were stuffy in our dreary room.  She told us that the thermostat is in a lady's room down the hall that controls that whole wing.  The lady has figured out how to open the case and pushes all the buttons.  The nurse told us that the lady thinks it is an ATM and that she can get some money out.  My thought was she is probably trying to get some money so she can go stay at the Days Inn down the street instead.  Well, I guess she was up during the night trying to get money out of the "ATM" again and made it freezing cold.  Then Cade woke up most likely because it was freezing.  I snuggled up with him and finally got a couple of hours of sleep. 

At 6AM, a nurse came in and told us we were free to go.  It didn't take us long to pack up and head out.  I told Jim in the morning, "Well, that wasn't that bad."  He looked at me like I might have lost my mind and said, "Well it sure wasn't that good either."  We both laughed.

I still don't see why we had to stay except that it might be a way for the nursing home to make a little extra money.  We paid $115 for our luxury stay at the Windcrest Nursing Center.  One nurse looked at Cade and listened to him with a stethoscope for no more than 2 minutes.  No one weighed him, took his blood pressure, looked at his g-tube, took a temperature, or anything.  They knew we were just there as a step in our process to get Medicaid.  Hopefully, we can get some benefits soon and there won't be any more ridiculous steps in the process.

Overall, the experience was very humbling.  I feel so badly for the residents that have to live there with a train right outside their window and dreary surroundings.  The nurses were all very nice though.  I learned that I better start saving for long-term care now.  I do not want to live in a place like that my final years.  I also know that I will never put my mother in a place like that.  Jim told his mom the same thing.  I hope my kids will take good care of me when I'm old.  I had three, so hopefully at least one will take care of me and their Daddy.

Here's a picture of Cade at the park down the street from the nursing home.

Cade did not care that our room resembled a dungeon.  Interesting side note: The first thing Jim noticed in our drab room were the red plugs (see above the bed).  He said, "It's sad when you know what the red plugs are for."  If you have ever had a child or loved one on life support, you know the red plugs.  Those are the important ones - the ones hooked up to the back up generator in case of a power outage.  I remember always being very careful not to go anywhere near the red plugs in the NICU.

The lovely view from our window.

One of the many trains that passed right behind us. (Warning - Train in picture is closer than it appears!) 

What a trooper!  Look at that sweet smile.

Monday, May 16, 2011

Mother of the Year article

I don't think I've posted it on here, but I ended up winning "Mother of the Year" in our area.  I was super excited, and I am even more excited about the spa gift certificate.  The best part though is always getting to tell my kids, "Because I said so, and I was Mother of the Year 2011 so you have to listen to me!"  I can already hear them telling me, "Mom, that was like 10 years ago, you don't get to use that anymore."  As far as I'm concerned, I'm using it for life! 

I just realized that the article is online, so if you want to read it, I included the link above.

Friday, May 13, 2011

More frustration with Grey's Anatomy

Does anyone still watch Grey's?  It's frustrating the heck out of me, but I still watch it.  In the last episode, they show Mark holding the baby hanging out in the hospital practically the whole show.  It's almost comical to me that their 23 week baby has no ng tube taped to her face, no cannula in her nose, no oxygen tank to lug around, nothing!  What's crazier is that they are taking this micro-preemie  with a seriously compromised immune system who is highly susceptible to germs to hang out in a hospital full of sick people!  This is all so fake, so not accurate to actually having a micro-preemie that all you can do is laugh.  I want to say to them, "Why did you even go there?  You are not ready to take on the story line of a micro-preemie.  It's much too complicated to fit in an hour show."  I guess that's why they just skip over the whole ordeal and act like everything is just peachy now that the baby is home because you know that's just how it is for real micro-preemie parents when they bring their baby home.  LOL!!!!!

Tuesday, May 10, 2011

Sprinkler Park Fun!

I took the kids to a sprinkler park last week.  I don't think I will be able to take all three to a swimming pool by myself, but the sprinkler park was perfect.  I was quite proud of myself for taking them all on my own.  We managed pretty well too. 

Cade was not a big fan of the cold water so after a while I put him back in the stroller which he seemed happy about.  Then Camdyn and Brenna played, and Camdyn watched Brenna run around through the water. 

Camdyn is under that big hat somewhere.

Brenna paused for a quick photo with the babies.

Brenna playing with Camdyn.

my favorite picture - Camdyn's hat is almost bigger than she is!

March for Babies

We walked in the March of Dimes' March for Babies on May 7 downtown.  It was a great experience.  There were over 8,000 walkers.  Some were walking for their own premature babies, some were walking for friends, and others were walking in memory of babies.  There was one very large group of walkers walking in memory of twin boys who did not make it.  They were born at 23 weeks.  That weighed heavy on my heart because although I always wish my babies had had just a few more weeks in the womb, I couldn't help but think that this mom would have given anything for her babies to have had just one more week in the womb like mine did. 

It was awesome to see all the people out to support more research to ensure that all babies have a stronger and healthier start in life.  With the support of our family and friends, we raised $715!  Thank you to all of you who donated - Granny & Pa, Kathy & Russell, Grandma Hensel, Grannie Stahmer, Fred & Lisa Adamcik, Mom, Dad & Roxanne, Bridget Brandt, Sandra Glasier, Charlotte Hachenberg, Carol Johnson, Kimber & Jason Locke, Terina Martinez, Holly & Jason McBroom, Joan Rice, Leonita Sanders & the Carmine Bunco Group, Ellen & Andrew Weichert, and John & Joyce Wied.  A special thanks to our top sponsors - Kimber & Jason!

Here are some of the pictures from our walk. 

Riding in the stroller was just too tiring for Camdyn so she had a little nap during the walk.  Doesn't she look so precious?

Cade was his usual "chill" self just strolling along taking in the downtown scenery.

We stopped on the Congress bridge to take a quick picture.

Daddy at the finish line with the kiddos.

 It is awe-inspiring to me that only one year ago, our babies looked like this (1 month old - 3 lbs and 2 lbs on CPAP) and we were practically living at the NICU.  We are in such a better place now that it literally takes my breath away!  They are now healthy, growing, reaching milestones, and strolling downtown!  Unbelievable!  And, Cade started crawling on Sunday too.  Yay, Cade!

Wednesday, May 4, 2011

We're so (dare I say it) NORMAL!

After more than a year of "not-normal", I am happy to report that we are approaching a very wonderful place of "normal", or as normal as anyone could be with twin 1 year olds and a 4 year old.  I'm loving all of the "normal" things we have been doing lately.  After a year of isolation, it feels so liberating to be able to go out of the house with the babies.  Here are all of the normal things that others may take for granted but which are so exciting to us:

- going to the park
- going to restaurants (and even sitting inside)
- meeting the family
- Easter egg hunting (or posing the babies with eggs anyway)
- going to Target or the mall or anywhere
- meeting other moms for playdates or lunch

Of course, we still have some "not-so-normal", but I think we are approaching more "normal" and less "not-so-normal", and we couldn't be more thrilled about it.  Here's a little of our "not-so-normal":

- still have to swaddle Camdyn to get her to take a bottle.  I know it sounds ridiculous, but it's what we have to do.
- go to weekly therapy appointments, but I don't mind them at all because I know they are helping.
- count every calorie that the babies consume to a point of obsession
- stress over their weight gain non-stop
- worry about reaching milestones, etc.

Here's my biggest "not-so-normal" act.  It happens every night.  When I lay the babies down to sleep, I cry every night.  I say a prayer that goes something like this, "God, I don't know why you chose to let me keep these babies, why you decided they should live, but thank you for these two precious souls that you have given me."  Then I kiss each of them again and again.  Then I go into Brenna's room and smother her with kisses and hugs too.  Every night, I do this.  Do other parents do this?  Is it going to get better because I don't think they are going to like it very much when they are 13 and Brenna is 16 if I am still doing this?  I'm really going to have to learn how to control myself.  I feel so incredibly blessed, and as difficult as this past year of completely "not normal" has been, it sure makes every little "normal" thing so unbelievably amazing!

We all went out to eat for my mom's birthday.  Happy Birthday Mom!

My kids with their great-grandparents (my grandparents).

Monday, May 2, 2011

Grey's Anatomy, do your homework please!

I don't know how many of you watch Grey's, but they seriously need to do a little better research before throwing an inaccurate micro-preemie story line in there.  I know, I know - it's just a show! (Ha - that rhymes.) 

I went to a friend's house last Thursday night for a Mom's Night Out get-together.  I was hoping they would not all be watching Grey's.  I knew this episode was going to show Callie's baby in the NICU, and I did not want to have some emotional breakdown in front of everyone.  Luckily, we just all drank wine and talked.  When I got home, I nestled up on the couch to feed the babies their midnight bottles and watch my DVR'd Grey's.  I was all prepared to cry and have an emotional breakdown.  Instead, I watched the show constantly saying, "Yeah, right! Like that would really happen."

If you plug in the numbers for this baby on the National Institute of Health's calculator for pre-term babies, this baby would have had a 14% chance of even surviving.  (23 weeks, 1 lb. 1 oz, no antenatal corticosteroids )  I thought, "Okay, maybe she will survive.  After all, miracles happen."  The first unrealistic part was the suggestion that maybe they should intubate the baby.  Uhhh, yeah!  She practically has no lungs.  It might be a good idea to go ahead and put that breathing tube down her throat like NOW!  Then they skipped forward to her at 5 weeks old on CPAP.  Okay, that could be realistic, but most likely not if she didn't get the steroids to develop her lungs.  Then they acted like the PDA was an emergency surgery.  Not really.  It would have been planned out way before it was an emergency.  I also just loved the way that all the general student doctors were performing the surgery too instead of neo-natalogists and experienced cardiologists.  Then they show her going home at 12 weeks.  Come on!  She was born 17 weeks early.  I doubt that there has EVER been a baby who was born 17 weeks early go home after only 12 weeks in the NICU especially one who did not receive steroids.  I couldn't ignore the fact that they said they had the monitors and oxygen tank ready to take her home.  Where was the cannula that should have been in her nose delivering the oxygen?  So, they are trying to convince us that this baby who was born at 23 weeks with no steroids with only a 14 % chance of survival needed only a little supplemental oxygen at night when she slept?  Well, isn't she the luckiest baby ever?  She had the easiest NICU stay I've ever heard of.  Come on, Grey's - do your homework next time or create a little more believable story line with a 25 week baby or so.  If you are going to pull out the shock factor of having a 23 week baby, you have to follow up with some realistic situations for a 23 week baby.

Now my question is who is going to stay home with this baby in isolation for a year, take the baby to a million specialist appointments, go to countless therapy appointments, struggle to get the baby to eat and gain weight and reach milestones, etc., fight with insurance, and on and on and on.  Grey's - you're just not ready to take on a micro-preemie.  Ask any of us who know.

The last most annoying part of the whole show was that they had a segment promoting Alzheimer's research after the show (which is great), but where is the clip for prematurity research?  I'm sure it was a paid advertisement, and no one paid for a prematurity clip, but I still found it annoying.