Against All Odds . . . and then some

I've been researching statistics on the internet and have found a few.  Mostly, I was disappointed in the research out there (or I'm not looking in the right place).  The only type of statistics about micropreemies that can be found are statistics of viability.  I would have liked to find more research on prematurity.  Here are some of the facts that I was able to dig up (not 100% sure on the reliability of these statistics).

According to the March of Dimes, 1 in 8 babies is born prematurely.  Of those only 6% are born at 28 weeks or less.  No statistics were shown for the percentage of babies born at 24 weeks specifically, but I would imagine it is somewhere around 1%.  I scoured the internet looking for this statistic, and I don't think it exists.

According to the data from the National Institute of Child Health & Human Development, Camdyn had a 49% chance of survival and only a 35% chance of survival without profound neurodevelopmental impairment.  Cade had a 71% chance of survival and only a 54% chance of survival without profound neurodevelopmental impairment.  These charts were based on birth weight, gender, twin gestation, and ability of mother to take steroid injections prior to delivery which we were able to do.  These charts were developed in 2003, so the numbers may be slightly higher now.  According to both of their MRIs and their development to this point, they will not have profound neurodevelopmental impairment, so we can count our lucky stars that we somehow managed to fall in the 35% for Camdyn and the 54% for Cade.

The world record for Most Premature Twins (all surviving) is 22 weeks 1 day.  Our twins were born 2 weeks later than this for which we are very thankful.  That is not a record that anyone wants.

If the fFn test that your obstetrician takes when you are pregnant comes back negative, there is a less than 1% chance of having a premature delivery within the next 2 weeks.  Interestingly enough, I had a negative result on the fFn test that my ob did at 23 weeks and had the babies one week later.  I am the less than 1%!

Fun twin facts - The chances of having naturally occurring fraternal twins is 1 in 90.  The chances of my daughters having fraternal twins is 1 in 17.  I hope and pray that they do not have twins after all we have been through!  Maybe there will be a way to make sure that only one egg is releasing at a time when they are ready to have children.

Just thought I would share some of the statistics I was able to find. 

Do You See What I See?

Back in April, I told Jimmy that I wish I could just fast forward time.  I remember saying that I wanted it to be Christmas or next spring already - anything but the time that we were in.  That time was too difficult.  That time was filled with too much stress, too much worry, and way too many tears.  I didn't want to walk through it; I didn't think I could do it.  I told him I just wanted to fast forward, and I would deal with whatever the babies' outcomes were at that time.  It was just too difficult to worry every second of every day not knowing what would happen.  I clearly remember him telling me that I would miss out on seeing what little fighters we have if I were just able to fast forward.   As hard as those days were, he was right.  Our little miracles showed me every day how strong their spirit was in their weak, frail bodies.  Now that it is Christmas, I can look back and see that I would have missed so much if I had been able to push fast forward on our lives.  Those days were certainly the hardest days that anyone could ever imagine, but this experience has changed how I see and appreciate life.  We were told that if they survived, they may not be able to see, hear, move, think, and on and on, so you can imagine how precious each of these things becomes when it is in question.  Fortunately, many parents never have to think twice about whether or not their children will be able to do these things.   

Do you see what I see?

When I see my children gazing into my eyes, I see the gift of sight and feel so blessed that my children are able to see!

When I see my babies roll over or kick their legs, I feel blessed that they are able to move.

When I see my babies reach up to touch my face, I am overjoyed that they have the congnizance to recognize their mother.

When I see them trying to figure out how to reach a toy or how it works, I am thankful that they can think.

When I see my children smile, my heart smiles to know that they are happy.

Do you hear what I hear?

When I see them look toward me when I am singing to them, I feel blessed that they can hear!

When I hear my children laugh, I feel that I am witnessing a little piece of heaven.

When I hear the doctors say they are amazed at how well our babies are doing, I know what it is like to be given a miracle (X2)!

When I hear Brenna singing to the babies, I am filled with joy.

Do you know what I know?

I know that I am blessed to have supportive family and friends.

I know that miracles exist.

I know that when you are told it is impossible, God knows that it is possible.

Merry Christmas!

$25,000 Pyramid

Here's a little game for all of you blog followers.  Think $25,000 Pyramid but with pictures instead of clues.  Try to figure out the category by thinking about what all of these pictures have in common.  The answers will be at the bottom.

Category 1

Answer - Things that weigh 1 pound. 

So now that you have the idea, see if you can figure out category 2.

Category 2

Answer: Things that are about 12 inches in length.

I just thought I would share these comparisons because it is still hard for me to believe just how tiny they were, and I was there to see it.  I still have moments of shock that happen at the strangest times.  I thought about doing this blog entry after going grocery shopping and buying a bag of rice.  As I held the bag of rice in my hand, I had to stop in disbelief thinking how in the world could the babies have weighed only as much as this pound of rice.  At moments like that, as I am looking at rice of all things, I am reminded of how blessed we are to get to love our babies everyday.

"Doctor Mom" not "Soccer Mom"

Camdyn and Cade had their 8 month check-up last week.  Camdyn now weighs 12 lbs. 11 oz., and Cade now weighs 18 lbs. 4 oz!  He might be the biggest former micro-preemie ever.  He is in the 25th percentile on the regular 8 month old charts!  That is incredible.  On the adjusted age 4 month charts, he is in the 95th percentile.  Camdyn is in the 25th percentile on the adjusted 4 month charts, but no where near being on the 8 month charts.  She just wants to be petite.  While the pediatrician would like to see her gain more weight, he is not worried because she is still gaining.  Our pediatrician said that both babies are doing great.

Cade had his GI appointment.  The GI said that we could wait on getting the g-tube but Jim and I both feel that Cade is not going to learn to eat and drink totally by mouth in the next few months, so we have opted to go ahead with getting the g-tube.  We just want Cade to be more comfortable.  I do think he is going to learn to eat soon, but I think learning to drink is going to take a lot longer.  We take him in to get a pH probe this week, and then we schedule a consultation with the surgeon before scheduling the surgery. 

We started with rice cereal this week for both of the babies, and I have been surprised at how "good" they are doing.  They both spit/drool a lot of it out, but they are eating!  Cade actually takes the cereal in his mouth, rolls it around, and swallows it!  He gets very, very tiny bites, and a lot does roll out, but he is swallowing food!  He is now accepting the bottle in his mouth and taking a few swallows of milk, but he often still coughs a lot with it.  We are scheduling the OT to come out again this week.  We were kind of on a therapy hiatus for two weeks.  The first week was because I was just too tired of therapy and appointments and needed a break, and then last week our schedule was so full of doctor's appointments there was no time left for therapy.

In November, we had 27 doctor's or therapy appointments.  Last week, we had 6 appointments.  I have no idea how people with full time jobs and preemies do this.  Taking the babies' to appointments is a full-time job.  When we eat breakfast, Brenna asks me, "What doctor are we going to today, mommy?"  She doesn't mind going; she just likes to know the plan.  I think our number of appointments is going to start decreasing.  We don't have to go back to the pediatrician for 6 weeks now, and we don't have to go back to the cardiologist for a year.  (Camdyn has a small valve that is open in her heart which we were told several people have; they just don't know it.  It is not a problem at all.  Overall, it just means that she can not be in the military or go scuba diving, and after all we have been through, those two things do not worry me very much.) We will still go to the pulmonologist monthly through March for their Synagis shots.  Cade only has one more week to wear his helmet too.  He only has to go back to take final pictures.  I know he will be happy to be done wearing his helmet, and I am happy that he has a normal looking head now.  I really don't mind taking the babies all over the place for appointments because I know that it is helping them.  I think of myself as a "doctor mom" instead of a "soccer mom".  

8 Months Old (4 months adjusted)

12/7

The babies are now 8 months old.  It's almost hard to believe.  This has been such a long, strange journey that I don't even know what to make of time anymore.  It feels like they have been home with us for a long time now like they have always been here which is a wonderful feeling, but they haven't even been home with us for as long as they were in the NICU yet.  We have one more month to go before they have been at home for as long as they were in the hospital.  One year ago (12/8) was the day we found out we were having twins.  We knew when the doctor told us "You're having twins!" that our lives were about to really change, but we had no idea just how much they would change in only 4 months from that time. 

Brenna with Cade and Camdyn.  Cade and Camdyn's outfits say "Whooo's the cutest?" with little owls.  When I received them as a shower gift, I remember thinking that they would never fit into these outfits.  At the time, they were wearing preemie clothes and these are size 6 months, and just look at them!

Granny holding Camdyn (Camdyn's great-granny)



 Camdyn can now really "play" Polly Pockets with her big sister.  Okay, so maybe she can't play, but she has a good hold on the polly.  She is trying her hardest.

bath time - so cute!



These are my two new favorite photos (above and below).  I just love dressing the babies in coordinating outfits, and Brenna is such a good big sister.  Although she did tell me to hurry because the babies were too heavy!  Imagine that!

blue-eyed cuties

what a doll!

Camdyn just had too rough of a day.  I found her sleeping while sitting straight up in her bumbo chair sucking her thumb. 

ready for Christmas!!!

Below are some pictures with Daddy.  He is such a great Daddy. 

Daddy covered in babies.

Daddy reading a bedtime story.

Camdyn cuddles with Daddy at Aunt BB's house on Thanksgiving.

Updates:

I don't have new weights for the babies because luckily we have not had to go to the pediatrician in a while.  We went from going every week in the beginning to every two weeks to now once a month.  We go this week, so I'll post new weights and other info. soon.

Camdyn - Camdyn is now laughing!  It is the most precious thing I have ever heard.  We were so excited to hear her laugh for the first time.  We couldn't believe our ears.  We were out on the deck grilling and Jim had just went inside to get something from the kitchen.  Brenna was dancing around when Camdyn started to laugh.  I yelled, "Brenna, go get Daddy!"  I think I scared her because I was so excited.  Jim came running out and we just marveled at her laughter.  It was such a joyous moment.  When you wait 6 weeks to hear your baby's first cry, you get pretty excited to hear their first laugh.  Camdyn is now rolling all over the place too.  She can push up well laying on her tummy, and she loves for you to hold her hands to stand up.  She likes to bounce when she is standing.  I think she is dancing.  Our most important accomplishment with Camdyn lately is that she will now take a bottle in 30 minutes fairly easily most of the time.  We changed formulas and that made all the difference.  We no longer have to hold her down and force her to drink a bottle for over an hour each time.  I am so glad we do not have to do that anymore. 

Cade - Cade has started to make little cooing/laughing sounds too.  He is smiling all the time now.  He is so much more laid back than Camdyn.  He likes to just watch her as she rolls around.  Cade loves playing with toys now.  He has also recently started standing when we hold his hands.  Before that, he wouldn't put weight on his legs so I was really excited to see that he can now do this.  Now, he stands really well.  He can also prop sit which means he can sit when he puts his arms in between his legs to balance himself.  He has made a lot of developmental progress in the last few weeks.  Cade now loves to hold a little blankie.  It is so sweet!  He has made some progress with sucking/swallowing.  He will now accept the bottle nipple and take a few sucks and swallows without gagging or coughing.  If he gets too much, he will still cough and gag though.  The amount is very minimal, but at least, it is a little progress.  We go to the GI on Friday to discuss getting a g-tube.  We are hoping he will be able to make more progress once he gets that awful ng tube out of his nose.

God - We thank you for sending us these little miracles.  We are so thankful that we have all managed to stay well so far, and we ask that you keep us all healthy.  We thank you for the progress that the babies have made and ask that you continue to strengthen them.  We ask that you let all of our upcoming doctor's and therapy appointments go well.  We thank you for putting such wonderful people in our lives who have supported us and continue to support us.  In your name we pray, Amen.

The Best Things Come to Those Who Wait

12/1

I came across this mom's blog who unexpectedly gave birth at 24 weeks to her son Bryce (www.brycemoline.blogspot.com). I usually have plenty of my own words with which to fill my blog, but her words spoke so truly to our own situation that I felt compelled to share it on here. The description of placing the ng tube is exactly how we feel.


" We've also had some equipment to contend with. There was the oxygen concentrator that hummed all day and night while Bryce was tethered to it for the first months we were home. And the tiny but mightily awful NG tube. NG as in nasogastric tube. As in you hold him down while I shove this tube down his nose and try not to land it in his lungs but rather in his belly and then let's make an educated guess as to which it did land in, all while he screams and I cry.  But back then we were more accustomed to how unusual our lives were. Everything in our lives was upside down. We didn't live at home and then we did but it didn't feel like home. Our old friends were new friends and our new friends (nurses, doctors and therapists) were old friends. Upside down was very much right side up to us at that point.


We discovered that if everything seems like its falling apart it probably is but if you try hard enough, cry long enough and pray loud enough you can probably survive it.


And slowly but surely our lives began to resemble those of other new parents, despite us having been parents for nearly half of a year. We returned to home and then to work, we went through the day on only a few hours of sleep but were rewarded a million times over by the joy of a baby finally in our home, in our bed, in our lives and forever in our hearts.


Then around thanksgiving Bryce smiled and our worlds changed forever. Every day every thing that we did was to illicit a smile from his sweet face. And everything else was to pass the time until we could return to his smiling face."






When people tell me, "I don't know how you do it," I usually answer, "neither do I, but we have no choice, and we love our babies and feel so blessed to have them that we just do it." I love that she writes that if you "try hard enough, cry long enough and pray loud enough you can probably survive it." I still break down when I hear the song "Before the Morning" on the radio. It instantly brings me back to our days in the NICU, and I realize that not only have our babies survived the unimaginable but so have we. Jim and I are stronger because of this whole crazy experience. We are a team; we have to be.


Our lives are just now beginning to feel like the lives of other new parents and our babies are almost 8 months old. Since the babies only go to doctor's appointments, we don't encounter a lot of people; however, when we do encounter others, it seems that strangers feel the need to remind me that we are not quite like other new parents. One lady in the waiting room asked me how old they were and when I told her they were almost 8 months old, she looked shocked. She then asked me how much they weighed. I told her their weights and even told her they were born extremely early and weighed 1 lb. at birth. Her response? "Well, my 3 month old weighs 18 pounds." Thanks for sharing lady! Of course, we get the silent stares in the elevator as people try to stare at Cade's ng tube without me noticing. I really want to say, "It's an ng tube; quit staring. If you have about 2 hours, I can share the whole long story with you - otherwise, mind your own business!"


Then, after all the frustrations of appointments, therapies, feeding challenges, etc., the babies awe us and we have to just take a step back and marvel at the miracles we have been given. Cade has started to smile a lot more now. When I walk into the room, the sweetest grin creeps across his face and he looks up at me with eyes that say, "I know you Mom, I love you, and I am so excited to see you," and in that instant, all that matters is that my baby boy loves me. Last week, we were blessed to hear Camdyn's first laughter. It was the sweetest, most precious thing I have ever heard. Brenna was dancing in front of Camdyn, and I guess Camdyn thought it was really funny because she just started chuckling and giggling. When you have to wait for each milestone for so long, it really is all that much sweeter. I know that many more days of frustration and challenge lie ahead, but I also know that many more days of complete and pure joy do too.

All I Want for Christmas is My . . . G-tube?

11/29/10


We have been working with Cade on feeding for quite some time now, and it doesn't appear that he is making any substantial progress.  He will now accept the bottle in his mouth and even take a few sucks/swallows; however, he usually starts coughing and/or gagging when he does swallow.  At this point, we don't know how much is due to the oral aversion and how much is due to the nasal gastric tube which sits at the back of his throat.  Every time he swallows, he can feel the tube and it initiates a gag reflex.  I have come to terms with the fact that he most likely needs a g-tube.  Of course, I wish that he could just eat, but that doesn't seem to be in the cards for us at this time.  Mostly, I just want him to be comfortable.  I feel like we have put forth a lot of effort in getting him to eat and trying to avoid having to get a g-tube placed.  We meet with the GI doctor in two weeks.  I wish it were sooner.  I am just ready to know if that is what they think he needs and if so, when it will happen.  He is just so uncomfortable, and it breaks my heart every time he gags on the tube.  We are hoping that after he gets the ng tube out of his nose that he will make better progress with eating.  I am so frustrated with all of the feeding challenges that both babies have that at times, I just want to throw up my hands and say, "Give them both g-tubes.  We'll let them learn to eat when they are 5 or maybe never!"  After I take some deep breaths, I remember that I am just so thankful that they are here with me, and I will deal with whatever challenges come our way.  With all of the issues of prematurity, we are fortunate to only be dealing with these issues as difficult as they are.  I know that Cade's Christmas wish is to have the ng tube out of his nose.  We'll just have to wait and see what the GI doctor thinks.

So much more than Thankful

Each year at Thanksgiving, we are reminded to be thankful for all we have.  We usually say things like, "I am thankful for all my family and friends," and there is no doubt that we are thankful, but this year, I need a much more powerful word than "thankful" because "thankful" just doesn't begin to describe how I feel.  We have witnessed countless miracles since April 5 of this year.  The fact that both of our babies are here with us now and are doing well is nothing short of a true miracle.  We feel so blessed to be given these little miracles who add so much joy to our lives and who remind us to be thankful every day, not just on Thanksgiving.  We can never thank all of those who supported us through this time adequately, and how can we even beging to thank doctors who have saved our babies' lives numerous times?  Somehow, bringing cookies to the NICU and thanking them over and over doesn't seem to suffice.  We were showered with support through our time in the NICU from so many friends and family.  We were given meals, gifts, donations, and so much more.  To all of you who lifted us up when we felt like we couldn't stand on our own, we thank you.  This experience has shown us how much we are loved, and we are so much more than thankful.  Happy Thanksgiving to all of you! 

New Looks

11/17/10


Camdyn -  Camdyn now weighs 11 lb. 11 oz.  She is still very tiny, but she is following her own little preemie curve.  The doctor said that for 7 month olds, she is in the .08%.  She is not even in the 1%.  She still takes forever to take a bottle, but she is slowly getting more efficient.  We are trying them on a 4 hour schedule instead of a 3 hour schedule, and it seems to be working alright.  We are hoping that it will work because it gives us two more hours in our days.


Cade - Cade now weighs 16 lbs. 2 oz. (almost 5 lbs more than Camdyn).  He is huge for a preemie.  He is actually in the 12th percentile for all 7 month olds which is incredible since he should really only be 3 months old.  It is easier for him to gain weight because he doesn't have to exert energy taking a bottle although he probably exerts more energy fighting the bottle than he would if he could just take it.  He hasn't made much progress with eating orally.  He takes his pacifier very well, but he hates the bottle.  We have tried just about every type of bottle, and it doesn't make a difference.  He is still getting therapy to work on feeding three times a week.  He has a GI appointment at the beginning of Dec. to talk about the possibility of needing a g-tube.  As much as I don't want him to have to get it, I think that is where we are headed.  With all things considered, I know this is not a huge deal and that things could be much worse, but I just want him to be able to eat.  I feel certain that it will happen in time, but I am not a patient person.  I want it to happen now!  Cade also got his DOC band to reshape his head last week.  It cost us $3500, so it better work!  I can already see a little bit of change, so that is promising.  He looks so cute in his little helmet.

Daddy feeding both babies.  Cade appears to be eating, but he really only sometimes allows the bottle to be in his mouth.  He rarely actually sucks.  Daddy has his hands full!

See the one little bottle to the left - that is Camdyn's bottle.  See the two bottles, pacifier, syringe, jiggler, feeding pump, and feeding bag - that is what we use to try to get Cade to eat.  We pretty much try a series of things to lead up to trying the bottle.  It is quite an undertaking, and this happens at every feed which is now 6 times a day.

Brenna lined these Barbie dolls up next to Camdyn in her car seat.  I thought it was pretty cute.  Then I realized that Camdyn was actually the length of these Barbies when she was born.  I measured them to check because it doesn't seem believable, but they are actually 11 1/2 inches long just like she was.

Look at this happy girl.  Notice anything different? 

She got her ears pierced!  Her pediatrician does it in his office.  I think she looks absolutely adorable with little earrings.

Silly girl!

Here's a picture of my handsome boy in his cute helmet.  He has done great with it.  It doesn't seem to bother him at all.  I was pleasantly surprised by this.  I plan on decorating it soon.  He is smiling more often now, and every one of his smiles just melt my heart.  He has the sweetest little smile.

7 months old (3 months adjusted)

11/5/2010

Camdyn and Cade are 7 months old today.  I don't have current weights on the babies because we don't have our pediatrician appt. until next Wed.  We are finally settling into our new house and getting all of their therapy and doctor's appointments lined up.  Hopefully, we will at least soon get into some sort of a routine.  We are having so much fun with them.  I just love watching Brenna play and interact with them.  Although, she is getting quite frustrated at Camdyn's new-found voice.  Camdyn now lets us know very loudly when she is unhappy.  While I am celebrating that her little lungs can do that, Brenna just wants her to be quiet.  She told Camdyn yesterday, "If you can't be quiet, you are going to have to go to your room!"  A few days ago we were in the car and Brenna asked me to turn up the radio because Camdyn was being too loud. 

Cade - Cade is getting his helmet next week.  I hope he doesn't hate it too much.  It ended up costing us $3500, so I sure hope it works.  (Thank you all who donated money for our babies.  Some of the money raised is going to his helmet.)  Cade will start seeing the occupational therapist from the private company three times a week to work on feeding as well as the speech therapist from ECI once a week.  He also is seeing a physical therapist from the private company once a week and a physical therapist from ECI once every other week.  The new ECI program seems to be much better than the one we were in which makes me very happy.  They sent the physical therapist to evaluate them, and she actually got down on the floor and worked with them unlike the previous program.  Cade is making progress, albeit very slow; it is still progress.  He was gagging on his pacifier a lot.  Now he loves his pacifier.  Then he was gagging as soon as the nipple of the bottle would touch his lips.  He now accepts the bottle in his mouth, but as soon as he starts to suck and gets liquid in his mouth, he freaks out.  He does manage a few sucks and swallows each time but a very small amount.  We will be starting the intensive feeding therapy next week, so I hope to see a lot of progress.

Camdyn - Camdyn has, as mentioned above, become quite vocal.  I'm pretty sure she is going to have an attitude very much like her big sister and her momma.  Fortunately for Daddy, Cade is very laid back.  Camdyn is getting speech therapy once a week from ECI to work on feeding as well.  Sometimes she takes her bottle beautifully and sometimes she flat out refuses.  It is very hit or miss with her.  Unfortunately, we can't just let her decide when she wants it and when she doesn't.  She has to grow.  I am excited to see what both of their weights will be next week.  Camdyn also qualified for physical therapy with ECI two times a month.  She is beginning to scoot (not really crawl).  It is very cute.  She wants to be on the move.  She just isn't strong enough yet.  I don't think she realizes that she is little bitty.

Camdyn must have thought something was pretty funny.  I just love Camdyn and Brenna's matching outfits.

Camdyn with Great-Grannie Stahmer - I don't know why we didn't get pictures, but the babies also got to meet Great-Grandma Hensel and Aunt Sandy for the first time this week.

My little cuties doing tummy time.

Cade was fussing so Brenna decided that what he wanted was all of her stuffed animals so he could sleep better.  I had to take a picture of her arrangement here.  Pretty sweet!  She also had put a bracelet on Cade a few days ago and told me that he liked it because it made him look pretty.  Poor Cade - he is outnumbered.

Don't forget to vote for Camdyn and Cade in the Preemie Power photo contest once a day through Nov. 11th.  It only takes a few seconds.  http://wildfireapp.com/website/6/contests/65899/voteable_entries/9920245?order=votes

Happy Halloween!

10/31/10

We had a great Halloween.  I thought I would post some pictures while I'm waiting up for the midnight feed. 

 Brenna, Colin, and Brylee decorated some pumpkins out on the deck.

This is Brylee's pumpkin.  Those things on the side of the pumpkin face are pictures of Camdyn and Cade swaddled up.  So cute!

Then the kids decorated Halloween cupcakes.

Don't they look beautiful?

Here's our Toy Story clan with me and Jim as Ms. and Mr. Potato Head, the babies as aliens, and Brenna as Jessie.  Too bad that I am the only one looking excited about taking a picture.

The cutest aliens that you ever saw!

the aliens strolling along

me and my precious kiddos

one tired alien

two tired aliens - Let's call it a night and go home!

I took this picture earlier this  week.  I found Brenna "blow drying" Cade's hair as he was sitting in his swing.  I just had to take a picture.  Look at his expression.  "Mom, make her stop!"  and look at how intent Brenna is on fixing his hair just right.  This cracks me up!

Here Camdyn is giving us her big sweet smiles!

I have entered the babies in the Hand to Hold "Preemie Power" contest.  You can go to their website to vote for Camdyn and Cade.  You can vote once a day.  The contest ends Nov. 14th.  Thanks for your vote for our little superheroes!

http://wildfireapp.com/website/6/contests/65899/voteable_entries/9920245?ogn=website&order=recency&view_entries=1