Wednesday, April 1, 2009

Got Milk?

Ethan and I are getting used to hanging out together during the day! For the most part, I feel like a "normal" mama with a "normal" baby. He sleeps, wakes up, cries, poops his pants, pees on me, and then the cycle repeats itself. I nap here and there, change his diaper, and spend lots of quality cuddle time with him. There's just one small thing that's missing: feedings.

Ethan currently receives all of his nourishment (my milk) through his NG (naso-gastro) feeding tube. It's basically a small tube that goes into his nose and down into his tummy. The OT and speech therapist have been working with him on his sucking and swallowing skills, but it's possible we may be going home with the tube. It takes some time for heart babies to learn how to feed, so they will often use the feeding pump and tube for a little while until they acquire the skill. It's a little scary to think about going home with this extra equipment, but I've learned that it's not about what I want. It's about what's best for Ethan.

The pump is not definite, however. We all know that Ethan likes to surprise everyone, so we'll see what the next few days hold. We are working on compressing his feedings right now. When he was first being fed through the tube, his feedings were continuous at 18 ml/hour. Yesterday, he was fed the same amount of milk over a 2 hour period with a 1 hour break. Today's he's being fed the same amount over a 1 hour period with a 2 hour break. The goal is to get him "eating" in 30 minutes with a 2 1/2 hour break. He's been tolerating the compression so far, other than throwing up once today.

At this point, compressing his feedings through the tube is the only thing keeping us from home. One doctor has been brave enough to say that we may be going home as early as Friday, but it will probably be early next week.

Please keep praying! I have lots of anxiety over this feeding tube and going home with such a special needs baby. Don't get me wrong, I can't wait to install his car seat, put him in the crib, and let him hang out in his bouncy seat. I just hope and pray I can enjoy those things without constantly worrying about his heart rate and oxygen saturation levels! Pray for me, Jeramie, and Ethan that we'll be a strong, supportive family. Pray that Ethan finds success with eating, and for our transition from room 5317 to Plum Frost Drive. Pray, pray, pray!

9 comments:

April said...

how exciting... I am sure it will be an adjustment but you will do fine at home!!!! I googled your street... you live really close to my church!!!! I have been so close to you all this time without knowing it. 2 sundays ago we were having a really great service and my pastor said that there were people in the service that knew someone that needed help/healing from God... you and your family were on my mind. He said it wouldn't be that week or the week after that. It wouldn't be immediate but it would come.. I claimed it for your ethan and strength for you and your husband. I love you girl and pray for you every day.

Janet Fuller said...

What an exciting time Joye for you and Jeramie. It is perfectly normal to be apprehensive. This is a new chapter for you and your new family especially with all you have been through over the past three weeks. You will do fine. God will continue to provide. He knows our every need even before is arises. He is our strength and our deliverer. Big hugs to all three of you. One day at a time... that is the world of parenting. God bless you with strength and courage. Keep enjoying all the milestones. They all pass so very quickly.

Anonymous said...

so excited to read about the new room and the absence of the blue monster this week! you guys are such a great example of what faith truely is.

we love you and we're still praying for you all.

love,
steph and chris llorente

Audra said...

From what I hear, ALL new parents are apprehensive, so I can only imagine what you're going through. BUT, keep in mind, you ARE prepared for this. Everything in your life has been preparing you for being Ethan's mother, special needs and all. You WILL be able to enjoy him even if you ARE worrying about sat levels and his heartrate. You'll worry about his poop, whether he's too hot or too cold, pretty much everything. Enjoy it! I'm so happy he's making such progress!

Jonathan and Meredith Ellis said...

I'm so happy for y'all! I know feeding can take a while, but he'll be able to do it sooner or later. Take from me, the pumps/NGs are easy and totally worth taking him home :) You will be super mom taking care of your little boy!

Love y'all! We are thinking about y'all and praying for you everyday.
Meredith

Jessica Davis said...

Joye, I think the last thing you have to worry about is being a strong and supportive family! It's completely normal to be nervous and anxious, but before too long everything's going to be rythmatic! Before you know it Ethan will be smotherin his face in MY cake, throwing mud at Fred, and building sandcastles (when I kidnap him for a weekend!) He knows he has two amazing parents who also have been a handful of surprises just like Ethan has! I'm SO proud of how you guys have been staying positive and strong. You deserve eachother, and Ethan couldn't ask for any better parents! And you know anytime you need help, or just a little boost of support, you have SO many people who love and care for all three of you! WE all love you very much, you pretty mama you!

Erin Kala said...

Joye-its been crazy here in JC and I haven't even had a chance to check the blog yesterday. I want you to know that you will do great with Ethan at home and I can't wait to meet him! I hope the feedings are going well and it's SOOOOOOO exciting you get to go home soon!!! Love you guys! And I'm still excited about being able to bring you a homemade meal from the Kala's!

Lisa said...

I think all new parents are nervous taking their baby's home for the first time. I know I was! Once this stage is behind you it will seem like a distant memory and you'll be able to hook that feeding tube up in the dark on zero sleep! You could probably pass the nursing boards by now too! Thinking of you all...

Heather Thompson said...

Joye, I am so happy for you!! It will be scary but you will all be fine :) Hold him all you want ~ he will grow up way too fast!!
I'll be praying about his feedings. Take care, Heather

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