Journal entry by Candace Nilles

I went home for Mother’s Day to spend the day with Avery. This was only my 2nd time back home. We went to church which was nice to get out and go to. Then went to lunch and picked up my mom (nonna) Mother’s Day flowers and card. We took a nap together 😴 wow did that feel nice! After our nap I took Avery to a splash pad on base that opened because it was 80 degrees this past weekend. Then we took my mom shopping at Walmart and went out to dinner at a Mexican restaurant so yummy 😋Gave Avery a bath and put her to bed. Then snuck off to go back up to the hospital. Zach spent the day with Ryan while I was with Avery. Zach officially had to go back to work on Monday 5/14/18 so this week it’s just me and Ryan hanging out together. 
 Today Ryan is officially two weeks old! This time I’m not as sad as I was last week when he turned 1 week old. I am more amazed and blessed at how well Ryan is doing at 2 weeks old with being born with gastroschisis.
The doctors and nurses 👩‍⚕️ 👨‍⚕️ continue to also be amazed at how well he is doing and how fast he is recovering. We are praying we are on the home stretch at the end of this week!
We have one nurse who we absolutely love named Rez. We have only had her 3 times at night but she is the sweetest nurse who even helped show us how to do extra things to make our life easier at the hospital. She is so good with Ryan and I think he enjoys when she is here too. Other than that we have had so many different nurses on the surgical floor that it’s hard to even keep track. 
Back onto feeds:
After Ryan did 5 days of going up daily by 4ml each day, now he is now going up by 4ml twice daily. This has brought us to 46ml today and our goal now is around 80 so we are halfway there but since they go up by 8 a day we should be moving pretty quickly as long as Ryan is ready and handles it. 🍼 
Breaking News! As of yesterday 5/14/18 we started Breast Feeding! Occupational Therapy was supposed to come in to help but there was a mess up with his appointment. They said I could try on my own since he was doing well drinking from a bottle the last time they were here and that I am experienced with having Avery who breastfed for about 10 months.
Well at 9pm feed Ryan took to the breast with no problem. He did so great like we never missed a beat! 💚 I think he enjoyed it way more as it was more comforting for him. We weigh him on a scale before and after a feed so we can see about how much he drank. When he was set for only 36ml he was drinking 40-50ml on his own. 
Occupational Therapy came in today while I am writing this and was super excited how well he was doing and said everyone is excited that he is breastfeeding because that is one thing they worry about babies struggling with. Not this little guy 🙌 She gave me a little hope that hopefully he will be on the road to discharge by this weekend or early next week 🙏 Also he just needs to get to 60ml, which will be on Thursday, for them to take him off the iv nutrition picc lines in his arm. 
The surgeon this morning said “this little guy is on his own terms and  wants to prove us wrong about how long we told his momma he could potentially be here based on the average 6-8 weeks” He was shocked he was only two weeks and accomplishing so much.
💚 he is one strong loved boy here who is mighty blessed with the miracles of God.
I have prayed and Prayed for this little guy since finding out about his gastro. And I know many others have also for him.  I know that God is showing us his miracles of healing and power through Ryan and I hope when you read this and follow his journey that you see and believe it too! 🙏 God is good!
* the necklace I’m wearing in the picture is from my sister when Avery was baptized. The day we went to my 20 week anatomy scan I went to put on a necklace and for some reason grabbed the one with Jesus on the cross that is actually Averys that I dug out. Little did I know that this was the day we would find out about Ryan’s Gastroschisis and this was the day God let me know he was there. To this day I have not taken it off. The very first time I held Ryan not even 24 hours after birth skin to skin Ryan laid on me and then reached and held the cross. Unfortunately I didn’t get a picture of this event. But the nurse saw this happen and was in awe. 
God has been with us and Ryan through this whole experience and has been showing little signs that he is here. Just wanted to share this moment with you all.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Candace & Zachary stay connected to family and friends.

A $30 donation powers a site like Candace & Zachary's for one month. Help keep CaringBridge online for them and for you.

SVG_Icons_Back_To_Top
Top