Friday, January 27, 2012

Go slow & wait...

Clay is now three months & three days old!! I can't believe how fast the time has gone. He weighs 11lbs 3oz & is 2ft long! He has out-grown of a lot of his clothes--I had to bring all the newborn sizes back home & replace them with 3mo sizes. It kinda makes me sad to think about. I don't really feel like I got to know him as a newborn--he was so sick in the beginning. But it amazes me to look at him now.  He acts so appropirate & looks so healthy!

And he is an appropriate & healthy 3 month old, aside from the breathing thing. It's easy for me to look past all the wires & tubes & cords coming from little Clay's body because I am with him day in & day out. It's easy for me to forget that his little lungs & diaphragm are still weak--because he does SO well on the hospital ventilator.  But I was reminded this week: Clay still needs a lot of help to breathe.  We were hoping to find the 'just right' setting for the home ventilator. After lots of tweaking, specialists, discussions with pulmonology, etc--we had to face the fact that Clay is not ready to come home just yet. The problem with the home vent is that it can't pick up on Clay's baby breaths to provide them with extra support--the technology is not as advanced with the home ventilators as it is with the big hospital ventilator. And, there are no home vents made for anyone under 15lbs. So, we will have to wait until Clay grows & his lungs & diaphragm strengthen some more. 

I'm not gonna lie, me & Eric are bummed.  But we know there's a reason. If a couple more months in the hospital means we get to bring home a much healthier baby, we'll take it!  Clay has come so far & I just know he'll continue to make fast progress.  In the meantime, I'll continue to spend my days getting lots of lovins & coaxing the cutest smile EVER outta that boy :)

ONE DAY, we will be home.

Sunday, January 22, 2012

Home vent is here!

After a veryyyy frustrating bout with Apria Healthcare, we finally gave them the boot & found a different company, AbleCare, to provide our home health supplies & equipment.  We were expecting to have to wait a few days for the new company to bring our home vent, but it was brought Friday afternoon, just hours after they received our information!

I cannot even begin to tell you what a feeling of relief I have.  The Respiratory Therapist from AbleCare came in, with all of the pieces & parts to the home vent (unlike the Apria people), she knew exactly what she was doing (unlike the Apria people) & she has worked with lots of pediatric patients before (unlike the Apria people).  I won’t go into all the details about how horrible our experience with Apria was, but it was a nightmare.  

So, Clay was put onto his new & improved home vent Friday around 5 o’clock in the evening.  A blood gas was drawn a few hours later, and all of his levels were in a good range!  He did well overnight.  Then on Saturday afternoon, he had a really frantic spell.  He got really distressed & air hungry & just wasn’t moving air well, so me & Eric changed his trach—which had a pretty gross plug in it, basically blocking his airway.  After the trach change, he calmed down and seemed to do well overnight.  

Our nurse Veronica came in this morning (Sunday) & immediately did another trach change because he was in distress again—and it had another plug.  When me & Eric got there, I could tell he was uncomfortable.  His color didn’t look the best & just seemed to be working hard to breathe.  Me & Eric did another trach change this evening, just to be sure it wasn’t another plugged trach making him work harder—it wasn’t this time.  So, a chest x-ray & a blood gas were ordered to make sure he hadn’t lost lung volume or that his CO2 levels weren’t too high.  Both came back good, thank God.  So, the docs decided to put him back on the hospital ventilator until the Respiratory Therapist from AbleCare can come to tweak the settings on the home ventilator.  

Here’s the problem: His home ventilator will provide extra support to 30 breaths/min—but if he breathes more than 30 breaths/min, it doesn’t get supported by the ventilator.  So, he’s working harder on his initiated breaths…which is why we noticed he seemed uncomfortable while awake & happy while sleeping.  After being on the home vent for 48 hours, I think it just wore him out.  When he was put back onto the hospital ventilator (which supports every breath he takes), Clay returned to his usual bright-eyed self.  I was so relieved!  After a nice long chat with Pappy Robin, a bath from Mommy & Nana Lisa, and some good snuggle time, Clay fell fast asleep—I have a feeling the poor lil guy will sleep really well tonight after the marathon he’s ran.

Hopefully there is some way to change the settings to suit Clay’s needs.  As hopeful as I was that things would be smooth-sailing after Clay was put on his home vent, I am glad he’s back on the hospital vent & comfortable.  We will patiently wait until Clay is ready to come home... If I’ve learned one thing through this whole deal, I’ve learned patience.  

Again, thank you all for your continued prayers & love & support. Please keep ‘em coming as we (hopefully) get closer & closer to home.

Peace & Love to all!

Wednesday, January 11, 2012

Maybe 'tomorrow'...

Tomorrow, tomorrow…it’s only a day away, right!? We’ve been told for the past week and a half that the home ventilator will be here ‘tomorrow’ and it is STILL not here!  It really should be here tomorrow (haha!).  When it does come in, we will go through a training to learn the vent inside & out so we’ll be completely comfortable using it on our own.  Once they put Clay on the home ventilator, our pulmonologist will make sure the settings are what Clay needs, so he can breathe comfortably.  We’ve been warned that there’s a chance Clay may not like the new vent and he may not tolerate the change. If that’s the case, he’ll just need more time to grow.  Cross your fingers & say a prayer he does well! If he does need more time, we will be a-okay with that too.  Clay will let us know when he’s ready to go home.  

We have yet another reason to be thankful!  Clay was sent to have a head MRI yesterday, which we were reluctant to agree to because it meant he had to be sedated--in order to keep him completely still for the scan.  Despite our weariness, the doctor was very persistent about doing the MRI.  Babies who have been as sick as Clay can have a condition known as PVL—Periventricular Leukomalacia—where small areas of brain tissue die, thus creating holes in the brain.  This can lead to developmental problems, both physically & cognitively.  So, the doc wanted the MRI to see what we are dealing with.  And the results came back good!  NO PVL was found! There was a small amount of fluid build-up around the frontal region of his brain, but they said this is common for babies with chronic illnesses.  From my understanding, it is something that should go away as he gets healthier. 

This week in the nursery has been busy--all kinds of different doctors & therapists have been stopping by.  One of them we’ve been working with is speech pathology with pre-feeding exercises.  Unfortunately, Clay’s oral aversion worsened after being extubated.  After getting his trach, he sucked on his pacifier so good… but now, he gags if anything is even near his mouth.  I have a feeling this is going to be a very frustrating issue to deal with.  And I feel so sorry for Clay!  It’s just natural for babies to be comforted by sucking—I feel like it’s how they learn to trust the world.  Him being deprived of that breaks my heart.  He has shown some encouraging signs, but he’s got a ways to go before he takes food orally. It is something we’ll continue to work on at home.  I’ll be a nurse, a respiratory therapist, a speech pathologist, a physical therapist & a momma all in one when we get home! Ha! I am planning to start putting together a Care Notebook soon, that way I can stay organized & better manage Clay’s care—an idea from one of the nurses.  There are lots of websites to help me get started—I am so thankful for Google! Lol.  And all of the support groups & blogs I have found on the web.  They are going to be an amazing help when we get home!    

I just wonder how he’ll react to ‘home’.  I’m sure it will be confusing for him and much quieter, for sure!  I’d say he will miss all the noise and activity.  As crazy as it sounds, it’s going to be kinda bittersweet for me to leave the NICU, too.  This place has become my second home and I’ve gotten to meet some really great people.  I will miss seeing & hearing about the other baby’s progress.  And I will absolutely miss our super wonderful nurses! Veronica, Elizabeth, Stephanie, Crystal, Alice, and of course, our cousin Alexis!!  We have been so SO blessed to have such awesome people caring for our son.  I seriously cannot thank them enough.  With all the attention Clay gets from the pretty ladies in the NICU, he may not want to leave! I know he'll be expecting visits from them one day! ;)

Please say a little prayer that Clay handles the transition to the home ventilator very well & we get home soon.  I’m dyin’ to sit in our recliner & snuggle with my lil’ man, right next to my bestest friend & the best daddy in the world…Surrounded by the hills & enjoying the peaceful place we live…Listening to some Goose Creek & just bein’ flat out happy to be alive…..aahhhhhhh….

Much Love & Peace to all!

Sunday, January 1, 2012

...and a Happy New Year!

Wellllll, Clay continues to do so very well! The docs have not made any significant changes over the past couple weeks—he did finally come off his morphine dosage, though. Yay!  These days, Clay is so so so much happier!  He’s been showing off his cute little dimples more & more, melting hearts everytime! ;)
I am SO excited to get him home—golllleeee, that boy will be so ruint! I just hope and pray our days at home continue to be as uneventful as they have been lately.  He does have some spells, but we’re learning what to do to make him happy. I’m getting so much more comfortable caring for his trach & being around all that equipment. I believe we’re about ready :)
Hopefully, home is only a couple weeks away! Mid-January seems to be what we’re going for.  I caught wind that the home vent could be in as early as Tuesday!  Once he’s transitioned onto the home vent, they want to move us to a private room on the PICU side and do a ‘care-by-parent’ trial for 4 or 5 days.  That way we can get the hang of taking care of him on our own, but still be supervised.  If everything goes well…we’re HOME FREE!!!
Eric & I have been trying to get things ready, so we have a lot of work to do! Cleaning & sanitizing evvvverrrrryyythinnggg is at the top of the list.  I know we have LOTS of people who want to meet the lil feller, but we just won’t be able to have visitors for a while—Clay’s little immune system is too vulnerable, especially with it being cold & flu season.  One day, he will be completely healthy & able to meet all you fine people, though—just wait! 
The first day of 2012; another year lived, another one awaiting! My, oh my, what a year 2011 was.  All of life’s big events seemed to hit us at once.  I graduated college, we got a new(er) car, Eric got a good steady job, we got pregnant, we bought a house, Clay came in October, and now here we are! It was a whirl-wind of a year, to say the least…FULL of blessings!  We learned in June that Clay would be born with CDH.  Soon after, I found this bible verse & have repeated it over and over in my head so many times this year:

“Rejoice in hope, be patient in tribulation, be constant in prayer,” Romans 12:12.

I hope it can bring someone else the comfort it’s brought me this year. 

I am SO looking forward to see the blessings 2012 will bring to my family. I hope & pray the New Year brings good health, happiness & peace to all of you!