Friday, August 24, 2012


This was a picture from yesterday. Little guy decided to pull out his NG tube (feeding tube), so I snapped a picture :) It was nice to see him with no tubes and no tape all over his face. He looks just like Eli here. If this is your 1st visit, I'm going to redirect you to my 1st post...
This is our journey, my thoughts and feelings, and our new miracle.

What The Future Holds

If this is the 1st time reading my blog. I welcome you! it has taken me quite some time to get to this point. I feel an abundance of relief since Ethan has been born. It has been a very rough road for me emotionally, mentally, and physically the last few months. I know it will continue to be a rough road, but I have wonderful family and friends that will help us through this. I wish I had accepted what was going on more when I was pregnant. I regret my feelings of crying my eyes out for nearly 15 weeks after confirmation of his diagnosis and heart condition, every single morning in the shower and laying in bed all hours of the night- wondering why we were chosen, why we were the one's who gets to have a broken baby, how on earth will I love him like I do Eli, and not to mention all the endless worries about the future.

Ethan is officially 7 days old at 6:56pm this evening, has it really been a week? He has certainly showed us his effort this week ....went from chaos d/t a possible bowel obstruction which lead to an emergent trip to the NICU at Children's Hospital early Sunday morning, requiring 100% oxygen d/t low oxygen saturation's, unable to regulate body temperature- dropping as low at 95.0 degrees, not feeding, not peeing, or pooping..... TO...... doing a 180 on everything. The only major concern they have at the present time is the feeding, he needs to meet the intake based on his weight and since he is a BIG BOY has actually gained a few ounces instead of losing during the typical 1st week after birth.

On a positive note, he is getting the hang of breastfeeding, which is always a concern with these kiddos and their mouth structure- tongue mouth coordination, low muscle tone, ect. I had determination this was one thing we will master. I have to remind myself to have patience and be persistent. Everyday is better and better. Thankfully my supply is not an issue, so he will only receive the breast milk. I have amazing support here from the lactation team to help the both of us. I am here for at least 3-4 feedings, so we have time to work together. When I'm not here he is offered a bottle of my milk and this morning was the 1st time he took the entire amount needed, which is yet another HUGE milestone. It's amazing what I took for granted with Eli, I couldn't wait for his 1st smile, 1st coo, rolling over, sitting, crawling, walking, ect. With Ethan I have literally cried the 1st time he latched onto me and learned to suck, swallow, and breathe. It's the super tiny small things for Ethan, things that I had feared would never happening right before my eyes.

So, we were curious... What's the plan, when can little mister get out of here. The answer is, he is in control and it's up to him. Realistically he will need to eat by mouth, whether it be bottle or breastfeeding for 24 hours, nothing supplemented down his NG tube (feeding tube). Once we get to this point, he will need to maintain this stride for an additional 48 hours. So it could be some time before he gets to come home with us.... I know he is in the absolute best place right now, but I just want him home more than anything in the world. It's so difficult to want to be there with Ethan and here with Eli or vice versa.

Now his heart defect is not an issue at this present time. Once he has learned to adapt to his environment, he is doing very well from what his practitioners are telling me. He will chronically have lower oxygen levels, he has a murmur, he gets tired easily, so that's another reason keeping here longer d/t feeding. His open heart surgery will still be at the 4-6 month mark, maybe closer to 4 months depending on how he does over the next couple months.

Our family has been wonderful. If it weren't for the Babycenter group I belong to I'm not sure if I could have made it as well as I did. I woke up everyday and just put one step in front of the other. I had to. I have a family that needs me. Work that counted on me. Patients that needed me. I'm especially thankful for the wonderful group of doctors I work for and girls that I work with every single day. They were there for me when I was near rock bottom on the day I got that phone call and they have been beside me ever since. I could go on and on. This is why I felt the need to share... Our story


For Friends and Family

Congenital Heart Defect- AVSD

BLOOM One Mom's Struggle

1 comment:

Jessica said...

Hi Renee! I hope Ethan is continuing to make progress with his feeding and hopefully on his way home soon. Your blog echos everything I felt while I was pregnant. Our kids are going to amaze us and you will fall more in love with with that little guy every day.