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!


  1. Found you on a post you did on FB. Just friend requested you too. We brought our Camden (CDH) home on a trach and vent also and we know this journey all too well. Just wanted to let you know that I am here if you have ANY ?s. It a long journey and Im sorry you have to go thru it as well. Prayers for you all!! He is a cutie and a blessing for sure!!

    I will tell you that Camden had a little rough time adjusting to home vent and they just had to go up some. I was worried at first, but soon realized that they are 2 totally different vents and had to be set differently. After a few days of adjusting to home vent he really started to take off and we were out of there much sooner than I thought! He was born Jan22 2009, and we left NICU on May 5th.

  2. Thank you so much! I added you on FB & I have a feeling I will definitely have some questions for ya! It's funny because I found your blog during Clay's first few weeks of life & would look at your posts from Camden's first few thank you for sharing your journey!