Coburn Kids

Mommy was able to take the long trek to Primary Children’s hospital yesterday with our little boy.  They were scheduled a week ago, but our little guy had the flu so yesterday it was.  They were doing an ultra-sound on Caden’s back to check and see if his spinal cord was tethered because of a sacral dimple and fortunately everything was ok.  (Every one sigh in relief.)  So now we just get to deal with his feeding issues which have gotten worse over the past few days.  Hopefully he’ll decide eating is a good thing soon

I’m sure everyone has them… those songs you can listen to a thousand times on repeat and never grow tired of them. I have some of those, mostly religious songs. Not really written by any LDS writers though, just songs that I have heard over the years that touched me and of course I had to go search them out and get them on my mp3 player. 

Growing up I can honestly say, I had no idea and never listened in my house to any religious songs outside those that sounded like the Tabernacle Choir, hymns or by LDS writers like Michael McLean or Janice Kapp Perry. Seriously, I remember the first time I heard a religious station in Colorado on spring break with my friend Racheal (hi Racheal!) and it was with her Uncle, Baptist I believe. It blew me away that there was really cool religious music out there that I wouldn’t mind listening to every day of the week, versus just ones that I had always thought of as “Sunday” only. (This statement should really show you the impact it had on me as a teenager since this was SPRING BREAK and I had this revelation.) So one of the things I try to do to remind me to stay focused during the week is listen to some of this inpirational music that just really uplifts me. I get my kids to listen to it as well, I really want them to know that religious music can touch you and be cool enough to listen to every day of the week. Here’s some of my favorites (you can hear any of them on YouTube and I provided links, I really have no idea what religion any of these bands are… but that’s not the point):

• Chris Tomlin - Amazing Grace, My Chains are Gone
• Mercy Me - I Can Only Imagine
• Mercy Me - Bring the Rain (this song is my Life Motto right now)
• Mercy Me - Homesick
• Mercy Me - Word of God Speak (yes, I really really like Mercy Me)
• Andrew Shust - My Savior, My God (Gena knows the words to this song)
• Mark Shultz - He’s My Son (box of tissues required)
• Big Daddy Weave - Every Time I Breathe
• Casting Crowns - Who Am I
• Casting Crowns - Lifesong

Small sampling of my mp3 player. Mixed in with songs covering every genre from country, instrumental, opera, pop, heavy metal, rap (embarassed to admit that one) because hey… we all have different moods and different songs that we like with those moods! 

Caden is becoming diabolical. I swear!  I had just dropped Adessa off at preschool and Caden was napping when I heard him laughing from the other room. So I go in (because this is a recent skill and there’s NOTHING cuter then a baby laugh) and he’s laughing his head off and wringing his hands in front of him like he just took over the world. Then I see his NG tube lying next to him…  Now I know that it’s just a coincidence, that the 2 events are not related but if I had a video camera at that moment you would have honest-to-goodness thought he was laughing like a maniac because he pulled his NG tube out!

As an added bonus during feeding, Caden has now learned how to push my hands away when I bring the bottle to his mouth. If only we all had such willpower!

We are having Caden’s blessing on March 9th at our ward. So this week I plan to go out and get him his blessing outfit. I thought we were going to do it on March 2nd but we have Stake Conference that day. Everyone keeps reminding me that we don’t have to do it at the ward, that we can do it in our home, etc. But I am bound and determined to bring this little boy to church and show him off!  It’s still RSV season so we have to be careful but I’m just so proud of my lil’ guy and I truly want to share the experience with our ward members who have done so much for us these last 7 months.

I was going to get some new pics up for everyone this weekend, update some things… then Sunday my hard drive quit. My entire computer has just stopped working. Which is a major source of frustration because of so many files I need to get to.

Everyone is almost recovered from last week’s flu (yeah!)  Caden is feeling better but we’ve taken a MAJOR step back in eating. I swear he has no idea what to do with the bottle anymore.  He just munches on it, won’t use his tongue and we can only get him to even put the bottle in his mouth about twice a day right now. But Caden’s doctor called us on Friday night (Thursday we went in at 7:30 pm just to make sure Caden was okay as he had a fever for 2 days straight and was coughing a lot) and Daniel asked him where we were with a GI. The pediatrician wants us to see another Nutritionist.  Why?  I have no idea really, a nutritionist as far as I understand, they don’t help with feeding issues.  Making sure he’s getting enough nutrients, the right amount of formula, gaining weight… yes.  I’m supposed to hear back from him this week on what and when I see this new nutritionist. As much as we know that Caden needs a G-tube there’s no rush though. Most babies get them put in at about 9 months and Caden’s 7 months old right now. So if it sounds like there’s feet dragging going on it’s still not something to push yet for.

Daniel and I are experts with NG tube’s now anyway. I don’t like to put Caden through it, but we are much quicker about it now and it has to be done. Which reminds me I have to start searching the internet for a new NG tube. They last about 30 days and I’ve checked with the medical supply stores in my area and they don’t carry them as small as Caden needs. They are very inexpensive though, so another 2 will probably be plenty. We’re also using a different tape for Caden’s face as well… the duoderm was giving him rashes and it’s very expensive. For 10 sheets it runs $56.

I have to tell you about the sweetest and most inspirational family right now that live in Provo, UT. I was introduced to and talked with Jeanine Mack when she posted on the Utah Yahoo group for cleft children. Her son Kaden was diagnosed with a cleft lip and hydrocephalus at an ultrasound. Because the ultrasound was measuring the head size a number of weeks ahead of the body she was going to be having a c-section to deliver their little boy early.

Their little boy was born on Feb. 15th at 36 weeks early and is currently at Primary Children’s hospital in their NICU. He has a rare condition called (Lissencephaly) which is a smooth brain and results in an inability to move, communicate and think. Besides a wide cleft, the other problems are widespread and involves some of the other important parts of the brain such as the Pituitary Gland which is the control center for the essential functions of the body. His right eye did not form and his left eye is tiny and non-functional. His optic nerve also did not form. This special spirit is only with their family for short time. They are hoping to get the chance that he will be able to come home for a short time so that he can pass away there.

If you want to follow their story you can see their blog here: http://sgmackfam.blogspot.com/ This little boy has touched so many lives only being a few days old. Of special note is that this little boy’s great-great Grandpa was Spencer Kimball! Their strength during such a difficult time and their ability to truly see the big picture and rejoice in the days they have with their son will touch your heart.

Ahhh, the dreaded “How is Caden doing?” question.  It seems simple enough doesn’t it?  I get this question nearly every day and it’s difficult to answer. Anyone who reads this blog knows how Caden is doing, knows about his Dr.’s appointments, what is happening. I realize that most people ask the question to be polite, that they ask and expect to hear the answer “fine!”, “great” and so forth. The media has done such a disservice to premature children. Every story you hear is positive, every story is about a 23 weeker surviving with minimal problems. About babies who don’t even weigh a pound going home with their families.  There’s a hard truth out there that most don’t want to hear or accept.

For all the success stories you hear, I promise that the majority of these children born extremely premature are struggling. I can’t tell you how many stories I was overwhelmed with while Caden was in the NICU of success, of kids who were “perfectly fine”. Only another preemie parent can understand how isolating it is to have a child such as this. Only they can understand how hard it is to repeat a medical history several times a month to various doctors. To have to struggle with the question “how is he/she doing?” The long-term effects of these children are many and I really have to wonder if people like to gloss over them as it’s too hard to hear the truth. To understand the emotional toll it takes on the parents and the child.  Too many preemie parents put up a brave face, or use the standard answer of “fine”.

 Nearly 45% of children born under 27 weeks are severely handicapped. Additional serious handicaps do not emerge until school age.  Being a preemie parent does not stop when a child comes home from the hospital or when a child turns 2 and “catches up” as they say. Even with my daughter Genevieve who is now 6 and a former 32 weeker, we see effects of her prematurity. Her fine motor and gross motor skills are behind and probably always will be.

So why all the doom and gloom?  Parent/Teacher conference if you can guess.  Genevieve did perfect academically.  Socially she is struggling. A lot.  She always has.  Well, being a mom, I of course knew that there was an underlying problem to this.  Gena is very smart, there’s GOT to be a reason she’s struggling in this area.  Then I went to a blog I visit frequently called the Preemie Experiment and was blown away by a post that describes Genevieve PERFECTLY:

Nonverbal Learning Disability

* Above average reading skills. They are often early readers.
* Above average language skills.
* Above average rote memory.
* Socially they struggle because they are not able to understand non verbal communication.
* NLD kids have difficulty in reasoning skills.
* Difficulty with visual and spatial functioning. (As well as they don’t understand personal space.)
* Poor handwriting skills.
* Problems with balance and coordination.
* Problems with dressing themselves.
* Very literal thinking. (Perfect example of this would be when last week they were asked in school to draw what they would be in 100 years.  Others in the class drew themselves on the moon, or as astronauts, or floating in cars… Genevieve drew herself as dead.  Seriously. She had a gravestone that said RIP and at first… while I was a bit disturbed… it was true!  In 100 years she probably will be dead!)

So I have some information now to go back to her teachers with. The problem with NLD children is that they need such extreme structure. They can get overwhelmed very easy because they pay attention to so much detail. So tomorrow I begin my search to help Gena.  I know that she will need some specialist of some kind.  We knew that she had a visual perception problem from the testing we had in Colorado with her.  But hopefully this will be the help she needs!

Yes, it was only a matter of time but Caden is now sick too.  I think, no I should say I’m sure, we all have the flu.  The antiobiotics have done nothing for the girls.  Genevieve didn’t seem to come down as hard as everyone else… I attribute this to her great antibodies and getting sick 15 times a year. Going to the doctor 40+ times by the time she was 2. But mommy, Adessa and now Caden are all miserable.  Caden was running a high fever last night, I considered what to do.  He’s 6 1/2 months old (3 1/2 months adjusted) and with the fever and all of us sick I think it’s pretty obvious what he has.  There’s nothing really to ‘give’ for the flu. So I’m giving him Tylenol but if his fever comes up again I’ll trek us out to the Doctor.

I had to cancel his ultrasound of his spine today though. I was not going to drag a sick kid up to a children’s hospital!  We rescheduled for next week.  Later on I’ll also call Caden’s OT and reschedule that appointment for tomorrow as well. Adessa is also staying home from preschool as she’s not close to being better yet. Daniel seems to have escaped being sick. But I heard my mom is sick, my brother and sister-in-law are sick too.  This flu is nasty. I would feel bad about not getting the flu shot this year (and Caden was too young for one) but I’ve heard there’s one strain of flu going around that’s not even covered by this year’s flu shot, and the other strain has mutated so the flu shot isn’t “optimal” for it either. That and some of the people I know who have the flu right now got their shots.  (I know, I know… I’m justifying it!)

Also, Gena has her Parent/Teacher Conference at school tonight.  I get so nervous for these!  I mean, she’s a great kid. She does well in school.  I haven’t been called by the school yet for any problems… so that’s a good sign right?

It’s Daniel’s birthday today! You can see his birthday present to the left. He was very excited, a 42″ 1080p LCD. He had to hook it up right away.  Adessa is modeling it for you with her favorite show (that I can’t stand) Max & Ruby.

I’m sick now too, which is NOT allowed.  The girls both stayed home from school today. Gena still has a very bad cough and Adessa is hoarse with a cough and sore throat still. So we’re all miserable together! ;) I have to do Daniel’s birthday dinner tonight.

Caden is being a pill with his feedings.  Last night he wouldn’t take any, this morning he was more interested in staring at his bottle then actually trying to eat from it. The cutest thing he does though, is when he won’t stop smiling at you to eat.  It’s absolutely adorable. As soon as everyone is better I want to go get some more pictures with the girls and Caden. So perhaps in a week or two.

This weekend has been crazy! First off, Genevieve came down sick after school on Friday. Sore throat, cough, fever and a headache. Then Saturday night Adessa came down sick with all that and the bonus of vomiting. Sunday they were both miserable and laid around the house the entire day. Which was kind of sad because my Dad is the new 1st Counselor in the Bishopric at his ward and I was really hoping to be there to see it! That and Genevieve was supposed to say the 2nd Article of Faith in Primary that Sunday as well. To add a little bit of excitement (maybe he was feeling neglected) Caden decided to choke on some spit-up and thought that breathing was just NOT the right thing to do. I ended up having to rip out his NG Tube (literally, I ripped it off his face and out of this throat) because he was just not able to recover. He was a little pale but I decided that since he didn’t turn a grayish or purple he was okay.

So Monday rolls around and I drag all 3 kids to the doctor. Adessa and Genevieve because they are sick and Caden because he needs his synagis shot. Turns out Gena has strep, but the doctor thinks she is just a carrier. He said that in about 20% of kids all their throat swabs will turn out positive for strep if they are a carrier. Interesting. But Adessa doesn’t have strep and Caden is not sick. The boy must have a super immune system because he has never been sick yet… not even with an ear infection which is especially surprising for a Cleft baby.

Whether or not they’ll both go to school tomorrow remains to be seen, and I’ll have to remember not to say the word K-A-R-A-T-E around them because I really doubt they will be well enough for their lessons tomorrow.

Caden’s doctor is going to be talking to some GI doctors about getting Caden a G-tube. So we’ll know in the next few days the how’s and when’s of that. Besides that the little chunk is 13 1/2 pounds now (though I can’t figure out how considering that he’s eating less then before).

Today was a terrible day to drive up to the U of U.  First off, with all the school closures and delays that should give an idea of the driving conditions. It took me nearly 2 hours to get there for Caden’s Preemie Clinic at the UT Dept. of Health next to the U of U Hospital. But, we made it just fine to get there by 8:45 am.

First we got a weight and height on Caden. Their scale said 13lb. and only 23″. But these can be inaccurate so who knows.  It still only puts him at the 25% for his height and weight for a 3 month old though I found out.  He’s a little one though he is getting some rolls.

Next we saw the Physical Therapist. Very nice guy who played with Caden and whom with Caden refused to turn his head to the left. We don’t think that’s a developmental concern though just that his muscles are a little short/stiff on one side. Caden was on his right side constantly in the NICU because of trouble moving food through his system. He said Caden is right on target for his adjusted age of 3 months.

Next we saw the Nutrionist. She also thinks we need to move to the G-tube. It sounds very invasive since it requires another surgery and it’s permanent but in reality it is much better and gentler then having an NG-tube. I was hoping we could do one last push on the NG just to see if Caden might make it but it’s pretty much confirmed now.  So when I go to the pediatrician on Monday we’ll get our GI referral. She also said that while his weight gain is going up it’s still not enough. In a few weeks we may want to consider bringing him up to 26 calories.  Because the can every other day that we blow through apparently isn’t costing us enough all ready.

Next was the Neurologist, very nice man. We have a slight concern with a sacral dimple at the bottom of Caden’s spine. We really don’t think it’s a concern but because it’s so deep we have an ultrasound scheduled next week up at Primary Children’s Hospital because if we wait any longer to check it then it’ll have to be MRI. His bones are thin enough now that an ultrasound will do. Now this wouldn’t affect his growth, they are checking to see if his spine is tethered, but it would affect his bowel control interestingly enough. So it’s a good thing to check now because there is no way we would know if it was affecting him until we went to potty train him and would utterly fail! Besides that, everything looks good with him. The brain bleeds don’t seem to be causing any concern. Keep in mind that he is still only 6 months old and really… he’s not doing much right now.

Next we saw their pediatrician. She took a thorough history and gave him the once over. She’s so surprised how well he’s doing and how tolerant he is.  (He really is, he’s so calm being poked/messed with/tests/procedures).

Then we went to the Audiologist, always important with a cleft baby. His hearing looks great in both ears.  Again, the Dr. was very surprised to hear that he hasn’t had 1 ear infection and that his middle ear is doing so splendid.  We might get to avoid any ear tubes!  Which is just a nice bonus. They’ll need to check again in another 3 months just to make sure.

So all-in-all it was excellent but Caden was just wiped out afterwards. Happy Valentine’s Day!