Wednesday, June 10, 2009

Tuesday, Tuesday

Man...Tuesdays are proving to be pretty unique days. I LOVE them because Jeramie typically works from home, but this is because we also schedule most of our appointments then. Other than the busy-ness of getting to multiple appointments in one day, Tuesdays haven't been that bad.

Until yesterday.

We were scheduled to go to feeding therapy, the cardiologist, and the pediatrician. The first two didn't go quite as well as we hoped, and the third didn't "go" at all.

We've been having some trouble getting Ethan to eat from a bottle at home. He rocked it out with the therapist last week, but has been pretty reserved since then. Yesterday he gave her a taste of what we've been experiencing (crying after every suck, disorganization, not latching on very well...) and she wants us to go for a swallow study. This will show us if Ethan is a "safe swallower". One thought is that some of the milk may be going towards his airway, which scares him and, in turn, makes him cry. This study will let us know exactly what's going on with how he swallows. For whatever reason, Ethan is freaked out by the milk that comes out of the bottle nipple. We just need to find out if this is physical (swallowing issues) or behavioral (texture/sensation issues). Our therapist did say that it is not uncommon for babies to skip bottle feeding altogether and go straight into taking solids by mouth. So we'll see. For now, we're not doing anymore bottle practice at home, just small drips of milk around his Soothie. This definitely isn't the direction we want to be going, but as I've said before, we've learned to go where Ethan tells us...however fast or slow that may be!

As for the cardiology appointment...blah. I REALLY like our cardiologist, don't get me wrong, but those appointments have been the worst for me. They are a harsh reminder of how sick Ethan still is. And I HATE saying that. The Echo showed that Ethan's heart function still hasn't improved. The right ventricle is in pretty bad shape, and I think the doctor (and we) were hoping it would be showing some improvement by now. He considered admitting us back to Duke, but ultimately decided that they wouldn't have done anything more than he did in our 2 1/2 hours there. This is something that will have to be watched very closely, so we'll be going back next Friday (the 19th). There's also a small concern that Ethan's heart rate is a tad-bit high, so he's going to keep an eye on that as well. We're thinking this is just "how Ethan is", but he doesn't want to miss any potential problems. It's so scary to know that we were a small step away from being back in the hospital. I'm having trouble dealing with the reality of Ethan's condition, but also not letting that steal my joy of having him home and seemingly healthy. As I said, blah.

We never even made it to the pediatrician since our cardio appointment went way longer than expected. It was just a quick visit to give Ethan the rotovirus vaccine, and we were able to reschedule it for tomorrow afternoon.

Ethan (and we) are still in desperate need of your prayers! I know my God is bigger than any cardiac arrest and can restore Ethan's heart function. The catch is still knowing He is good even if that doesn't happen. My prayer is that Ethan will recover from such a traumatic event and be able to live a happy, active life. Please pray for the restoration of Ethan's heart and that Jeramie and I would find the strength we need to sit through appointments like yesterday.

We love you guys!


nbhs2004 said...

It's crazy to see such a beautiful little boy and think something's wrong with him! I pray every night that his heart and body heals and gets where it needs to be, and just that you all have strength, courage, and patience! I love y'all so much and it was so great seein you and Ethan today!

Jessica Davis said...

i don't know why i just put that log in name for my computer..haha.. ANYHOW, hope you know it's ME!

Anonymous said...

Ethan will be in my prayers. Hopefully his heart function will heal & become stronger. God can make this happen and that's what everyone will continue to pray for. Best, Shannon Meroney-Davis

Janet Fuller said...

You all continue to be in our prayers. Though we have not met Ethan in person I can understand what you mean when you say you forget how sick he is when you are watching him smile and enjoy his time at home. His smile is so very precious and we enjoy all the pictures. Love, Auntie Jan (also the Great) : ), Bart, and Mawmaw.

Becca B. said...

Sorry to hear that you guys had a tough day. Its been so exciting seeing nothing but positive post after positive post. Reality is a bit sucky at times too though. I will continue to pray. I know God has a big plan for all of this, and for the three of you. Sending you love from Arkansas!

Terry said...

Someone told me once that the reason it was important to memorize scripture was so you could Pray Scripture at those time when you really needed it - God's words are always with you. I think of that often, and now for you when I hear you describe the "catch". Boy, do I ever get that. Which made me think of one of my favorite passages, and you & Jeramie put it on Ethan's birth announcement: "I know the plans I have for you ... plans to prosper you and not to harm you ... plans to give you hope and a future". Mighty words from a Mighty God. I love you guys and will continue to pray for Ethan's health. Thanks for the blogs to keep us posted.

Nancy Morton said...

Joye - we've been there with those feeding therapist blues. Believe us - it will happen. Audrey never took a bottle but look at her now! It is so hard trusting down the line. We'll pray for that heart. We've prayed for a right ventricle before... I think all these setbacks just keep us trusting in God.
We didn't look on Audrey as sick either. You just keep enjoying him. Much love....Nana

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