Evan is progressing, even if it's slow and some days are a step back. When he was first born he only ate for about 5 minutes before falling asleep but now he usually lasts about 15 minutes. His record was 25 minutes--what a champ! The nurses are so encouraging with each feeding and they give us hope that some day we'll go home and forget this whole experience. Sometimes its annoying when the other babies in Evan's room are crying and he's trying to sleep but it's also nice to share a room with other parents who can relate with my experience. All of our babies have their own challenges and we all work together to stay positive. I think Evan has the most doctor visits. He is followed by urology, neurology, neurosurgery, neonatology, cardiology, othopediatry, occupational therapy, physical therapy...
and yet the only reason we're staying in the NICU is because he won't eat on his own.
Here's how I really feel about the NICU right now:
It really stinks to be a brand new mother who is away from her husband while trying to raise her child under the control of demanding doctors and nurses. I wish I could hold my son without fear of pulling off the wire monitors he's connected to. I feel badly when Evan is subjected to seemingly constant pushing and rubbing and blood draws. I cried the first time I had to change the dressing on his back because the tape was pulling his sensitive skin and he was squirming, kicking, and crying. It pains me to leave Evan at night, especially when he's laying in bed with his eyes wide open. I don't trust all of the nurses here. I wish I had control of my son's care. I don't always have a positive attitude about my trials. Right now I just wanna go home.
Jenna hang in there!
ReplyDeleteThis made me start bawling in the NICU with Max hooked up to all of his tubes and monitors.
It's awful seeing them get prodded and poked. It's awful leaving them with people you dont know and have no reason to trust.
And its awful being told when you can and cannot hold or touch your baby.
It's awful being told by other moms, who havent experienced NICU mothering, that youre "lucky you get to sleep." It makes me want to punch them in the ovaries, honestly.
There's nothing fun about it, and I think it's perfectly okay for us to sometimes not have the best attitudes.
Hang in there! We're praying for you guys.
:( I'm sorry, Jenna!
ReplyDeleteI am interning in a Pediatric Feeding Disorders clinic at Kennedy Krieger Institute (a developmental disabilities hospital for kids here in Baltimore), and we see a lot of children with spina bifida + eating problems for inpatient intensive services. I hope for you all Evan figures out this eating business soon so you can get home, but mostly so that he can get eating independently. I wish on no one lifelong feeding tubes and struggles around getting their child to eat.
You can do this. You need to do this. But seriously, if you're uncomfortable with his care, say something.
Thanks for continuing your updates, in good spirits or honestly frustrated ones. I have learned so much from your honesty that has helped me be more understanding of the patients and families I work with everyday in similar situations.
-Jana
Hang in there sister. You're doing great. You'll get to take him home soon and while you'll never truly forget your experience there...it will seem like the distant past! Let me know if you need anything. Your little family is in our prayers.
ReplyDeleteawe hang in there Jenna! It's heartbreaking. We're praying he eats on his own soon! I think I know how you feel..some nurses really suck and it's really hard when you don't feel like you have control over your own baby...it's a horrible feeling...just hang in there. The experience will make you stronger..and it will strengthen your love for Even. Our thoughts are with you. Hang in there!
ReplyDeleteWe had some time in the NICU with our youngest when he was a baby. It can be pretty difficult at times to see them poked and prodded but keep in mind that those doctors want more than anything to send you guys home too. I also learned a few years back that if you are uncomfortable with any nurse that you can request that they no longer care for your son. I know it can be tough but you are also gaining some priceless bonding time with him right now. You can do it!
ReplyDeleteLove you Jenna girl! You are amazing. You're in my prayers and I can't wait to take pictures of your little family when you get back. And yes, I already call that I get to take pictures of you guys. :)
ReplyDeleteJenna, love. Your post made me want to give you a gigantic hug and tell you it'll get better. I'm so sorry. It's so tough to have your little one in the nicu. Liam was in the nicu for a week after he was born because he had pulmonary hypertension and it was so hard for me to leave him at the hospital and feel like he was just lying there and no one was caring for him. I would go home and feel awful because I wasn't with him and then drive to the hospital and feel terrible because I was so scared to hold him with all his oxygen and food tubes. We were able to take him home after a week, but he was on oxygen for the next month and a half. It was rough, it was so hard to feed him as he was attached to oxygen and we weren't able to leave the house because he was susceptible to getting sick and the oxygen tank made it so it was uber hard to get around. With lots of prayers he improved and he is off oxygen (although we still have to monitor him) and doing well. It takes time,but you will be able to take Evan home. The Savior loves him and if my experience taught me anything it was that the Lord is so mindful of all of His children, including the mom who is brand new to this mothering thing and wants nothing more than to be with their baby. You are in our prayers and we love you so much! Diana+James+Liam.
ReplyDeleteDiana, I didn't know you had a NICU stay--I'm sorry! I just saw a family go home last week with an oxygen tank and I thought, "At least I don't have to do THAT..." I guess we all have our own challenges, don't we? :)
DeleteOh Jenna. I just bawled. I've been having a "I'm not enjoying being a Mommy" day, and then just sat and read your post and bawled and bawled for even thinking such a thing. You are such a trooper. And I'm sure you hate to hear "hang in there...it'll be over soon" when all you want is for it to be over NOW, or that "you're being such a trooper", when you feel like you'd rather just tromp all over every person who crosses your path instead of pretending you feel fine. I'm so sorry that this trial is such a tough one. I can't even fathom. I won't pretend to understand your specific pains and struggles, but just know that we're praying for you. Every single day. We love you and your precious family.
ReplyDeleteThanks all for your encouragement and empathy! We're on the upswing and there's light at the end of the tunnel!
ReplyDelete