Tuesday, November 30, 2010

The Best Things Come to Those Who Wait


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.

Sunday, November 28, 2010

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


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.

Wednesday, November 24, 2010

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! 

Wednesday, November 17, 2010

New Looks


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.

Thursday, November 4, 2010

7 months old (3 months adjusted)


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