Journal

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.
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Journal entry by Candace Nilles

On Tuesday 5/8/18 Ryan was officially a week old. In my mommy mind I was emotional about this. How is my little baby a week old already?! I feel like we were at the hospital giving birth yesterday to this miracle. Time is flying by in a way to say the least. Obviously it’s no fun being stuck at the hospital and are always looking forward to the day we can go home whenever that is. 
At a week old Ryan started his first feeds of breast milk. 🍼 Day 1 he was getting 4ml every 3 hours to see how he would handle it. This day I was very on edge because he just got his suction tube out the day before. I was praying his body would be ready to handle it. Worrying about him spitting up bile and having to put the tube back in. And everyday until we leave I think I will be on edge about this. When they first started feeds they use something called a binky trainer to get him used to sucking and going slow. Ryan absolutely hated this. His first feed was great, it was something new and delicious but after that he was annoyed of the binky trainer.  Also this was the first day and night we had to wake him up from sleeping to eat. Since he is getting all his nutrients from the picc line in his arm he hasn’t needed to wake up at all so this is something new. It i definitely a challange to wake him up. 
Day 2 of feeds 5/9/18 they went up another 4ml every feed so now he needs to drink 8ml every 3 hours. This day he was switched to a bottle with ultra preemie nipples. He loved this no more binky trainer 🙌  still having a hard time waking him up to eat. It’s hard also when he is tired from constantly being messed with by doctors checking his belly or changing bandages, nurses taking vitals (he hates blood pressure and even getting his temp taken in his armpit) and every morning getting blood drawn from pricking his foot. Poor little man 😭 
Ryan also had a visit from big sister Avery this day. She likes looking at him for a second and holding him for maybe 30 seconds but other than that she loses interest 😂  Avery and I went on a little date to the little outdoor shopping area and she played in some water and at a little park. We also ate frozen yogurt. When Daddy took her home she went on a date with him to Red Robin. 💕 It is so hard being away from her and I always cry when she has to leave or I have to leave her. But I feel lucky to only be an hour or so away from her to be able to see her twice a week. Which is a big change for us both when mommy and Avery used to be together everyday 24/7. Just hope she knows mommy and daddy still love her like crazy and are doing our best with this situation with her brother. And that he is working very hard to come home. 🏡  
Day 3 of feeds 5/10/18 they went up again and now he is at 12ml every 3 hours. His belly stared to get a little firmer which they were saying if it was to get worse they would pause feeds to let his body rest. And restart the next day. But they gave him a suppository because he hasn’t pooped in a few days. This worked well and they said they sometimes have to do this every few days to help them. Ryan had a visitor from Daddy’s Work today too! At his midnight feed he had fresh breast milk and he was still hungry after he ate his full 12ml. Poor little guy kept rooting to try and find more. He was up for the full 3 hours until the next feed at 3am. We tried getting him to sleep and soothe him but he just wouldn’t budge and there was nothing we could do for him besides that and wait until feeding time. 
I told Ryan when he busts out of this place and he is ever hungry he won’t have to wait. (Hoping this helps motivate him to come home sooner 😉)  
Day 4 of feeds 5/11/18 his belly is doing better they are upping him to 16ml every 3 hours. I hope he continues to tolerate and do well with each increase. They should be lowering his iv nutrition so that way he is a little more hungry for all of this. The surgeons will be coming in to change his dressing again. I didn’t take a picture two days ago when they changed it but it is way smaller and will take a photo today. I’m excited to see how it looks! 
Please continue praying for us and for Ryan. We are pleased with his progress and hope and pray it continues to go this way. We can’t wait to be home and be a family again. 👨‍👩‍👧‍👦💕

Journal entry by Candace Nilles

Our days may be slow but they are filled with good news. Every little leap in his healing is a celebration. On Saturday we had my mom and Avery come to visit for the first time to meet Ryan. 
Avery was super curious at first about him but she warmed up quickly and was super cute about him. Constantly saying “awe” “baby” and even his name! My heart melted for sure. After seeing Avery with him it made realize how big she is now. Avery did really well in the hospital and even went on a wagon ride around she loved that and all the nurses loved her. Avery held Ryan while sitting on Zachs lap for the first time and it was the sweetest thing. 💕My mom got some good snuggle time in with him too. 
After seeing Avery on saturday it made me miss her that much more and I was heart broken. It is the worst feeling to have your little baby in the hospital and your other at home. Hopefully Ryan is changing that for us though and making his way towards a discharge.
I went home on Sunday to spend the day with Avery. We went to a park, out to lunch, to the store, and took a wonderful nap together! 💤 we then watched movies together and ate dinner gave her a bath and put her to bed. Back to the hospital I went.
During that time when I was with Avery Ryan made some huge leaps! He ended up pooping not once but twice! 💩 poop is such an exciting thing it means his bowels are waking up and starting to function.  Also they changed Ryan’s tube in his mouth that sucks out the bile to a new smaller one. His output was now turning clear instead of dark nasty green.  From 11am Sunday to 6am on Monday it was still clear and only a little output. When the doctors came in to do rounds they were talking about taking the suction off and just let gravity pull any out and by Monday night or Tuesday morning they would remove it. Ryan must of heard them because he decided on his own he was ready for that tube to come out and pulled it out in front of the doctors. So they decided to keep it out and see how he does over the day and night. As long as he doesn’t spit up or look in pain then we will start feeds on Tuesday at just a week old! Now when they start feeds they will go very slowly on the amount and slowly increase his amount depending on how his belly and bowels handle it.
Please pray for the feeding process to go smoothly and we don’t have any set backs. 🙏 we are on the road to getting home and need all the help from our lord to get us there💚

Journal entry by Candace Nilles

Our time here at the nicu is unknown. They say it’s an average of six weeks but I’m praying we go home on or even before Ryan’s due date of May 21st 🙏
As of now he seems to be on the fast track 🙌 keep up the good work Ryan!  The days at the nicu seem long and uneventful right now so to say. We spend our time just bonding with Ryan and getting all the skin to skin time we can to help his healing. 
We were in the nicu with Ryan for only a day and a half and then he was upgraded to the icu floor here at Seattle Children’s. The nurses said he was the healthiest baby in the nicu and was voted to go to the brand new icu unit. This is where he has his own private big room and there is a bathroom and a sleeping area for parents in the room!  
The surgeon comes in every morning to check his tummy and the output his tube is sucking out of his stomach. This is where he said it’s like watching the grass grow at this point. We are waiting for Ryan’s intestines to wake up. The tube from his mouth should go from dark green to light green and then to pretty clear.  Since his intestines don’t work they use the suction to help eliminate the back up of bile his stomach is making.
we were only in the icu for two days and then we were moved once again to the surgical floor which is because he is doing well!  
please keep praying for our little miracle that his intestines start working and that we can start feeds soon.🙏 
there is more I need to update but I will leave that for the next post. I appreciate everyone reading and sending well wishes for Ryan 💚

Journal entry by Candace Nilles

Let me start by saying Ryan’s Journey already has been a blessing with miracles happening through him thanks to our Lord and Savior! I know many of you have been praying for this little guy and they are working already. We are blessed for all your prayers and continued prayers for his healing🙏 
While I was still at UW Medical waiting for the hours to go by for discharge, Zach was with Ryan at Seattle Children’s about 2 hours after birth. Once Ryan was there the team of doctors and surgeons assessed Ryan and his Gastroschisis. Only his bowel was out and it was all completely healthy 🙌 next they were able to fit his bowels back into his stomach and did what they call a suture-less of “turbin” closure. This is where they can take his umbilical cord and coil it to essentially close the hole and put a bandage over it. Over time his belly will close like a normal belly button. This process usually makes the healing and recovery time faster! Zach texted me about this and I was 😭 crying tears of joy that he didn’t have to get a silo.
These were the 2nd miracles we were blessed with! Our 1st was obviously our great labor and delivery of Ryan 👶 
When I was finally discharged zach came to pick me up. Which was at about 4:30 pm, 6 hours after birth. 
When I saw Ryan in the nicu he had a big tube down his throat to help him breath just air from the room. He didn’t need to be hooked up to any oxygen 🙌 His little face was a squished with the tape used to hold it. Also they had him on medication to paralyze him to let his body heal and not move or hurt when they stuffed his intestines in. This is also why the tube is down his throat. The small tube in his mouth that you see in pictures suctions out Ryan’s stomach. Because his bowels are not working yet his body needs help getting rid of the bile his stomach makes. It will look green until his intestines start to wake. Once the color is clear and light that means his intestines are starting to wake and we can start little feeds. 
By morning at around 7 am the doctors and surgeons did their rounds and assessed Ryan. He was then off of the medication that paralyzed him and they took the breathing tube out and he was breathing on his own! Our 3rd miracles to happen! 
I was able to ask when I could hold him and they told me whenever I would like! I was able to hold Ryan not even 24 hours after birth! This is huge for babies with gastroschisis. Many moms are not able to do this for days or even weeks. We were truly blessed and now as I’m writing this I have held him 3 times for more than a couple hours each time. Daddy is currently sleeping so mommy took full advantage, and it helped comfort Ryan and help him sleep too. 
When Ryan was born I only got to touch his hand and rub his head in the nicu. This blessing to hold Ryan so soon is truly amazing and hope this will put us on a faster track Home 🏡 with all the skin to skin healing he’s getting and bonding with mommy. Which mommy needs because pumping hasn’t been the best the last few times. 
As you can see God is answering prayers and creating miracles for everyone to see through Ryan in just 24 hours. Please continue to pray and thank God and watch our lord and savior answer.

Journal entry by Candace Nilles

4/30/18 was induction day! I’m going to tell Ryan’s birth story for you all. Let me tell you it is lengthy and I do get into some details. Just want to be able to share my experience and process with others as well as document it for myself
The morning of induction day I called the Unviersity of Washington Medical Center to find out the time they wanted us to come in for our induction. Well to our surprise when I called they said we could come right away... this was 8 am in the morning... I was under the assumption that we wouldn’t be going in until 6pm. At our last doctor appointment they made it seem that is when they like to do inductions. Well I was not ready at 8 am and the traffic going to Seattle on a Monday at 8am is chaos. So I asked if we could come in at noon instead. The charge nurse said no problem.
Avery was all set for Nonna (my mom) at home.  We gave Avery a kiss goodbye and off we went with multiple bags packed and ready for our hospital/nicu stay. The ride to Seattle was the quickest. Take note if you plan on driving to Seattle from the suburbs go around 10 or 11 we got to the hospital in less than an hour! 🙌 🚗 
We got all set in our room at the hospital, mind you the doctors say plan on 24-48 hours for a delivery like this. They like to take things slow to make sure baby stays happy and because we are starting from the start.
I was maybe 1cm dialated in the beginning so they put a thing in called a folley balloon to help me dilate. Once the balloon falls out it means your about 4cm dilated and they can start pitocin. 
The balloon 🎈 was put in around 1:45 and fell out at 6:30. Which is pretty fast they said.
(Sometimes it can take up to 12 hours) it also made me have quite a few contractions, but once it fell out it settled down and that’s when the pitocin started. 💉
This induction was totally different than when I had Avery. They went super slow on upping the  pitocin. Then Zach’s cousin came with some pizza for us.... oh yea this hospital lets you eat while being induced or in labor 🍕 🎉 what a relief!  You just can’t eat after you get an epidural.
Tried to get some sleep that night but I maybe got an hour... zach is a champ at sleeping and got his full beauty sleep 😂 
At 3:30 am the doctors broke my water. Once my contractions became worse I was about 5cm dilated or more I got the epidural. Let me tell you it is nice, I was able to relax and sleep a couple hours. I received the epidural at 4:30 am on May 1st. I was able to sleep til about 7am when the nurses changed shifts again.
This was my 3rd team of doctors and nurses. 
👩‍⚕️  I will say the doctors and nurses at UW Medical are amazing! They went above and beyond and made this whole labor experience wonderful. My actual labor nurse named niki had me do some awesome stretches, yoga moves and massaged me to help get things going and boy did it work. I was at 10cm and ready to push by 10 am.  
My first push was at 10:07 am and I pushed about 5 times and his head was about out. My nurse asked me if I wanted to feel his head and hair while he was crowning and I did. I started 😭 crying tears of joy and then touched his head again and was crying and laughing at how happy I was that he was coming. Well all that laughing slipped him the rest of the way out. What a beautiful way to deliver a baby 💚 it was the most amazing thing to deliver Ryan that way. He was gorgeous he looked great he cried some beautiful little cries.
They held him out for the delayed cord clamping and zach got to cut the cord. Then they took him across the hall and zach followed. This is when they put in his tube in his mouth for suction and put a baggie over his lower body to keep the intestines moist and warm.
After birth they got him ready for his transfer in the ambulance 🚑 to Seattle children’s. They rolled him in for me to see him and touch his hand before he left. (The next post I will update you on what happened the first 24 hours of his life) 
I was left at UW to recover and was discharged after only 6 hours which was pretty amazing! I felt great too for just having a baby 🤰
Ryan Robert Nilles
Born 05/01/2018
10:32 a.m.
7lbs 9oz
 
Here are some photos of the delivery of Ryan 💚

Journal entry by Candace Nilles

Zach and I were going to our 20 week anatomy scan excited to see our little baby. Zach’s mom luckily was in town and watched Avery while we went to the appointment. We were not going to find out the gender because I always wanted one pregnancy to be a surprise. Well we got a even bigger surprise that day when the high risk OB came in to tell us the news that our baby had something called gastroschisis. Here come the water works 😭 I was a mess of course. Nobody wants to hear something is wrong with their baby.
 Not many people know what Gastroschisis is or have not even heard of it before. Gastoschisis is a defect in the abdominal wall. The belly area next to the umbilical cord didn’t close all the way and usually bowel is able to come out. This happens before a fetus is 12 weeks. Statistically this happens 1 in every 2000 babies and is on the rise. Doctors and scientist do not know why this is happening or what causes it. The good news is that it is fixable and there is usually no long term affects.
We are praying he has a short hospital stay and is a healthy normal baby after this. Because The doctors do say plan on average for 6 weeks could be shorter or much longer. 
We decided to do genetic testing to rule out any other factors. With this we did end up finding out the gender. We were having a Boy 💚 and also he had no other problems 🙏 
We found out the gender because we were going to be having lots of ultrasounds from this point on and also non stress tests (NST) where they hook up bands around the belly to monitor babies heart rate, making sure he was moving, and not in any distress and lastly to see if i am having any contractions. Around 30 weeks I was going in weekly for both of these 1 ultrasound and 2 NST’s a week.
Since this pregnancy is high risk because of gastroschisis. Babies tend to come early on their own or because of complications. Fortunately Ryan, oh yes we decided his name is going to be Ryan 😍 has been doing amazing and has stayed in til 37 weeks which is the time they will induce me. Doctors as of now like to take babies with gastroschisis out around 37/38 weeks if all looks good with baby. 
We have to deliver Ryan at the University of Washington Medical Hospital in Seattle. Our drive depending on traffic from our house is anywhere from 1 hour-2 hours. 
After delivery Ryan will be trasferred two miles down the road from UW to Seattle Children’s hospital. Zach will ride in the ambulance with Ryan while I will be recovering and waiting about 12 hours to get discharged.
We are lucky to be close to Seattle where some of the top Doctors and Surgeons will be taking care of Ryan. This is where he will be assessed and the doctors will see what kind of surgery he will need to close Ryan’s bowels back in. 
There is a couple ways they will close either they can fit everything back in right away and can close. Or they might have to put only some in and the rest in what is called a silo (kind of like a bag to hold his bowel in) that will be hung above him and slowly let gravity and maybe help push them back in each day to expand the stomach. Then they can close after a few days. 
The longest time your in the nicu/hospital for is for feedings. We have to wait to make sure his bowels are working where he can start pooping. Then we can start feeds which is a slow process to make sure the bowels can handle it. Once we reach full feeds he will be able to come home. 
Now I will go in more details of everything once we deliver and are going through his journey. Just wanted to give a quick detail of what we know so far and what we have been going through. 
We are set for induction on Monday April 30th 
they say it’s a slow process and can take 24 to 48 hours. I will update you all on Ryans delivery soon! Prayers are much appreciated! God has been working miracles on our little one🙏
Candace & Zachary’s Story

Site created on April 27, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and prayers for Ryan’s health and recovery. Thank you for visiting.

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