Conner snuggling with Andy last month after his bronch and tubes were put in his ears. He stayed over night at the hospital so they could perform a 4 channel study. Between the bronch and the study we learned he has moderately severe tracheomalacia, reduced tracheal cross-sectional airway, significant obstructive apnea and confirmed his reflux. Tracheomalacia is a softening of the trachea walls. If you can imagine breathing through a big straw that keeps collapsing, this is what it is like for Conner 24/7. Having severe reflux continues to break down the tissue. So where do we go from here??? A tracheostamy and a fundoplication. A tracheostamy is a surgical procedure on the neck to open a direct airway through an incision in the trachea (the windpipe). A fundoplication is a surgery where they tighten the opening of the stomach so that he will not continue refluxing.This a big step for us...I have been a bit scared of the idea. I worry about a variety of things and I mourn the thought of not hearing his sweet little voice for quite some time until he learns to talk/babble with the trach. They feel he will need the trach at least until he is 4 or 5. He needs to have his trachea grow large enough and firm enough to support his breathing. Right now it is like he is doing a constant workout and in the long run is not good for his heart. Next month we will be going to Stanford for a heart cath and lung profusion scan. Because this is such a big step while we are there we will be getting a second opinion just to make sure there are no other options. I have a feeling there aren't any....I know Heavenly Father will make me equal to the task of caring for a baby with a trach. I just sometimes do not feel adequate...I know where that comes from and so I continue to remind myself to choose FAITH!
On an exciting note...
They also did an echo cardiogram when he was in the hospital last month and his heart continues to be doing GREAT! We feel very blessed knowing that the oxygen requirement while he sleeps and when he is sick is not due to a failing heart... :)
14 comments:
i have been praying for you guys about this most recent news. we know how daunting it can seem to find out your baby needs a trach...but it becomes like most everything we heart parents face - it becomes like second nature.
we are here if you need anything or have any questions at all.
connor looks incredible in all the recent pictures!
much love,
victoria
I just can't even imagine what you are going through. We'll be praying for all of you. I can't wait to meet sweet little Conner. Wish we lived closer!
Thank heavens his heart is going strong it would not be good if it was bad with his trach problem
You're an amazing family. We are all supporting you however we can. Don't give in! You're my examples! Just don't try and do it by yourselves!
XOXO
I am so happy for the heart results. Sadden with the trach. But just like everything else we go thru, you'll just learn to adjust to it and someday you'll look back and remember those days as blessings from Heavenly Father. I miss those days.....but dont' want my children sick for me to have them again! Good luck! Cute photo with daddy, by the way!
Oh little Conner Man!! I love the picture with Daddy-
Sariah you are equal to the task at hand. You and Andy continue to amaze me with your simple faith and great attitude. We love you and support you and we love that little man!! Keep us posted- we will miss seeing you in a couple of weeks. I need to send you those pictures of little Conner. They turned out sweet!!
Give that baby boy big kisses for me and if anyone can take care of him it is you! You were divinly chosen for this job Lots of Love Leah
POOR LITTLE BABY! And poor momma and daddy:( I believe that your faith must be amazing and you are stronger than you know! Continue to be strong:)
I can only imagine how hard on your mommy's heart it is to have your baby go through so much. Just remember that Heavenly Father is watching over all of you. You and Andy are so strong and have such great Faith. You are doing a great job. Heavenly Father picked the perfect mom and dad for baby Conner. We will pray for Conner.
PS. Thank you so much for the card, you have no idea how much it meant to me. Love you.
Thinking of you and this added challenge you'll have soon with Conner. I'm sure it's hard but you're such a good mama and will do whatever it takes for your little guy to grow and thrive. Praying for you and may you be blessed with "ease" through this! Hugs to you guys...let's meet someday soon :)
I'll keep Connor in my prayers and you too! What a strong little spirit he is. He is amazing! Love you guys a lot.
UGH! One more thing! Maile has a fundo, they did it when the placed the g-tube. Don't let anyone tell you he can't throw up with it! I have never dealt with a trach but I imagine it will be like the feeding tube, horrible at first, but eventually it is just part of life. Did you know Catherine Zeta Jones had one as infant?
Hi Sariah,
I just read this last posting. I just wish this were all better for you, you have had to be so strong and go through so much. When are you headed back out here? Let me know what we can do to help. Pick ups from the airport, or whatever. I'd be happy to send an email out to the ward if you need a place to stay...
Love you Sariah :-) Your sweet family is always in our prayers
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