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Good morning! I wanted to quickly mention that I was able to figure out how to change the settings of the blog and anyone can comment now. I had no idea I was restricting comments. So comment away! We love reading them.  Xo

Off to Boston

It has been nice this week (for the most part) being able to focus on one big thing that needs to be accomplished rather than 6 major things. This week we have been waiting to hear if and when we are going to Boston for surgery to close Ryan's PDA. Looks like we are going early next week. I am nervous since it's different in Boston. Ryan won't have his own room, it's noisy, and the nurses don't know him. It's weird to say that I'm not nervous about the surgery. I trust that the surgeon will do a great job it's more the recovery time and getting back to his home. It's safe to say we will be going back and forth to Boston all next week, hopefully back by Friday! I'll have to treat myself to some Starbucks while we are down there since I'm slowly getting back on the coffee wagon since Ryan was born :)

Ryan is doing well with his feeds and the volume is increasing daily. We need him to put on some weight! He has already gained a pound since he was born and grown an inch. He is now 13 inches long and 2 lbs 6.3 oz. 

Hope everyone has a good weekend and enjoys some sun! Drink some cocktails for me this weekend! 

Wow I can't believe Ryan is 4 weeks old today. This has been the longest and fastest month of my life. Happy 4 week birthday Ryan!

Xo Andrea Shawn and Ryan

So much love

We can't thank everyone enough for all of the support and love we have recieved through this experience.  The cards that we have received brighten our day more than you can imagine. It's the littlest things that make us so happy and thankful. 

I know I always gush on here about how much I love the NICU staff, especially the nurses. One thing you don't know is that they frequently check in on Ryan on their days off. It melts my heart when they call and Shawn and I are there. If we aren't there they leave a little note on the white board with who has called called to check in. So cute!!! I love that white board. On Mother's Day I had a note from Ryan on there that said I love my mom and dad, happy Mother's Day love Ryan. Water works!

Ryan has really turned a corner in the last few days. He is getting rid of a lot of his extra fluid that he had. Sometimes when I think I couldn't be be happier after he has overcome an obstacle, it's a new day and I find myself saying I have never been happier :) that saying never gets old. Kind of like I felt like I couldn't love Shawn anymore and then he became a dad, crazy in love all over again! The older I get the more I view difficult times as an opportunity to bring people together and I have learned so much about myself. Shawn and I have learned a lot about each other going through this together and it has made our marriage stronger.

 So hoping to get Ryan back on his breast milk feeds in the hear future and that his PDA closes on its own. Follow up echo this week. If it doesn't close then he will go down to Boston children's for a quick easy surgery. I'm just nervous having to go down there since the set up is very different from where he is now. We need him back on the conventional vent, hopefully this week. Everyone cross your fingers and pinky toes! 

That's all for now! 

Andrea Shawn and Ryan 

Trunk up for good luck

One of Ryan's primary nurses Brooke made this cute elephant for him... It is perfect! Trunk up for good luck and it has brought us good luck for sure!!! Today was such a good day for us. Ryan had two negative cultures the past 2 days so he had his central line put in this afternoon......THANK YOU GOD! The surgery went very well and Ryan did great! He is such an amazing baby. We are so relieved that this has been put in I can't even explain it. Now onward with the weight gain and getting him proper nutrition. He still needs treatment for the infection to completely clear but now we can move forward to the next obstacle. 

An interesting fact that I learned from the NP tonight was that a child's lungs aren't fully developed until age 7 or 8. 

Happy 3 week birthday tomorrow Ryan! 

Andrea Shawn and Ryan 

It's 4:04am

I have discovered that I write these posts best in the middle of the night. When I try to write during the day I think about it too much since I have 1,000 things going through my mind. I found the last post boring and clinical and I don't want this blog to just be me throwing you weird terms and technical updates about Ryan. People want to know about Shawn and I too....I think :) 

One thing I really enjoy is coming to the NICU. The nurses and staff are so kind and actually fun to be around. They truly help make this experience a little easier and welcome Shawn and I like family. As much as we can't wait to take Ryan home with us at the end of this, I know it will be hard to leave. 

Ryan's blood cultures are still coming back positive. This is so frustrating and I wish I could make this all better. This little guy has been through so much already and everyday it rips out my heart to watch him be poked and touched as often as he is. I know everyone is working hard to help him but this infection needs to go. Hopefully we get a negative culture from yesterday and again today so we can get the central line. Ryan needs to up his nutrition and start to grow. Overall he is doing well and actually is doing much better with his new vent and his breathing has improved. 

A couple random thoughts ....Breast ointment and breast pads should be covered by insurance. It's insane how much these things cost and if A mom has decided to breastfeed it's like she is being punished for having to buy these necessities. I had to get that off my chest. 

Since Ryan has been born, my mind has shifted. People warned me that I won't care about certain things once you have a baby, Shari I know you are reading this, you were right. I'll leave it at that....

Saying goodnight is the hardest. I hate leaving him at night......I'm leaving a piece of my heart at the hospital. Since Ryan is in a little incubator, we can't kiss him or hug him goodnight every night. I just want to scoop him up before I leave and give him a huge hug and a kiss and squeeze him. Instead I open the little door on the side whisper to him that I love him, that he is doing a good job, he is so strong, that everything is going to be ok and then I kiss my finger and touch his body with it. 

That's all for today....or this morning.

Love Andrea Shawn and Ryan 

We need a negative blood culture

Ryan seems to have taken one, maybe two steps back today. Some good news, Ryan is up to 1 lb 10.1 oz and took a pacifier last night. He was wide awake at 1am so they put a little breast milk on a q tip and he sucked on that and then went back to bed. 

This afternoon Ryan was switched back to the high frequency vent since his chest X-ray wasn't that great. We haven't had a negative blood culture yet which is frustrating since everything is on hold until we get atleast one back. Ryan had started 1ml of breast milk yesterday but that was stopped today. His urine output is low but they have had to cut back on fluids because of the PDA and they can't treat the PDA until there is a negative blood culture and he needs a negative blood culture so he can get his pic line back in and he keeps blowing through iv's daily. And and and and.... You get the idea...

Today I was able to go to a surprise 40th birthday party for my dear friend Melissa and I have been looking forward to this for the past few weeks. It was nice to be out in public, thrown on a maxi dress and some mascara for once! Happy birthday Melissa!!

I don't think I mentioned this before but both of Ryan's eyes are open. It's hard to tell what color they are. 

Fingers crossed that we have a negative blood culture today! 

xo Andrea Shawn and Ryan 

Happy 2 week birthday Ryan!

Thank you everyone for the positive feedback about the blog. Several people have said that this has helped them feel closer to us and feel like they are right there with us. This blog has been comforting to them. I enjoy helping others and making people happy so as much as I thought this blog would help me I'm happy it's helping others :) I know several people from The Moore Center are reading this blog and know that it's very comforting to my family with how kind and supportive you all have been. 

Ryan update: Ryan had 4 nurses that were off yesterday call to check in on him. This little nugget is seriously loved so much. We are so thankful! 

Wednesday Shawn and I took a serious ride on what everyone in the NICU calls a roller coaster. Sounds like something you can prepare for right or know what to expect... Ummmmm no. Rounds went well wed am and Ryan overall had a good day. He was comfy in his little cocoon that Kim puts him in. Legs in tight, on his belly, head to the side and arms tucked in. Again so so cute I want to squeeze this kid every time I see him. When we came back Wednesday night to hang with our man they got the spinal tap results back and it was bloody when they did the tap. They were checking to see if this infection he is fighting was in his spinal fluid just to be sure. Reason 564 why we love this place, they dot every I and cross every t. Perfect care for a type A personality like myself. The NP pulled us aside and told us that Ryan has meningitis, or so they thought, and that Dr. Bulanoswki would be speaking with us more in a few minutes. We spent the next 30 minutes thinking he had meningitis and this 30 minutes was pure hell to say the least. So we go from good day to, oh your son has meningitis.....Yankee cannonball here we come!!! Thank good for my husband during those 30 minutes- Shawn is an angel sent to me from God. I have been saying this since the day Ryan was born. I knew I loved him and he was special but Shawn is so strong and knows just when to pick me up when I need him most. Ryan and I are lucky duckies.  

After speaking with the doc she said that the tap showed one bacteria colony growing when it normally would show thousands if it was meningitis. The 1 colony could be from the blood since he has an infection there. So either way as a precautionary they are treating him like he has meningitis. 

Now we wait for 2 negative blood cultures before they can put in the pic line again. Saturday the earliest. Poor kid has had a lot of iv's already :(

We were told Ryan's PDA is moderate but this will be treated most likely after the infection clears. His PDA to be open is common for someone like Ryan. His white blood count is going down which means his infection is going away-thank you God. This kid needs a break! 

Thursday I got to kangaroo Ryan for an hour and a half, skin to skin....pure heaven. Google kangarooing. I got to REALLY hold our baby for the first time since he was born. He did so well they said that we can try kangarooing daily, YES!!!!

I still need to get his birth certificate and go to the New B town hall which I have been trying to do since he was born...  Sounds like an easy task..... Not for a small town that has people that work like 4 hours a day 3 days a week. I was so happy that Wednesday I found the time to swing in on the way home when they opened at 12. I rearranged my pumping times, when I left the hospital that day, I was feeling great. I get to the town hall and there is a little yellow sign that says " town clerks office will be closed Wednesday may 13th so our workers can attend a conference." Oooooookay. So that still needs to be done. 

There is a group of moms that get together every week to check in on how things are going. It's called little miracles and I enjoy going. I have connected with another mom so it's helpful seeing her around and we always check in how each others children are doing. She has twins in the NICU and is such a strong person. I can't imagine going through this with 2 kids at one time although I never imagined I could do this with one. It's hard  when I see Ryan's stats drop, I have to sit down and regroup since I almost pass out every time. I have become obsessed with looking at his monitor for his heart rate and oxygen level. Shawn forces me to look at him and turns my head when I try to look at the monitor when it dings. I know these "episodes" will happen a lot over the next 3 months but after seeing how the other mom has handled her bad days, it gives us hope and courage that we can do this. 

I can't remember if I wrote this already but Shawn and I have said often that we are able to be so strong because of the support around us. The texts, messages, calls, emails, blog comments help us get through our days. 

People have asked what our average day look like. Our tentative schedule, depending how the boss feels :) That's Ryan not Shawn.... I get up at 5am to do "mom things" and call Ryan's nurse to check in on how his night went. I love calling this early because they also weight him at 5am so I'm anxious to hear this number. We measure our kid in grams---amazing right? After I get up and get ready for the day and I try to get to the hospital for 830. Rounds can be anywhere from 9-11 and I want to be there for that. Then I hang out with Ryan and leave about 1ish. Go home to eat lunch and take a quick nap and pet Sully :). I wait for Shawn to get home, we eat dinner, go back to the hospital for 530/6 and stay until 830 or so but this week we haven't been leaving until almost 10. If Ryan has some stuff going on then Shawn has been taking the day off from work to be with us which is nice. I have to get up every 3 hours to do "mom things" but I don't even care. I don't think I sleep from 9-5am, I have been able to sleep more than I thought I was going to though. 2 hours at a time is a blessing! Who need sleep though right? We can sleep when we are dead!

I think I covered enough random thoughts in this post. Ok one more thing, at 8:37 tonight Ryan will be 2 weeks old so please say happy birthday Ryan at some point today :)  

My email is ap11784@gmail.com I know some people have asked for it. 

One day at a time

Love

Andrea Shawn and Ryan 

The honeymoon is over

Since Ryan was born he has really been doing very very well. They say that premature babies have a honeymoon period which is usually 2 or 3 days. Ryan's was about 10 days and we knew this day would come. Monday and Tuesday were long hard exhausting days. Monday he had his primary nurse Kim back who is a walking angel and Ryan loves her. Kim could tell something was off with him after being off for the weekend. She sent down a blood culture and it came back positive. So he is fighting an infection currently amongst some other "stuff" and we will leave it at that. I can't imagine being 1 lb 5.5 oz fighting off an infection.  This kid is a true hero in my eyes. 

Positives since he has been born, no head bleeds!!!! Everyone should stand up and yell thank god right now!! He is being fed breast milk which he loves and I'm so happy I can provide that for him.

 I also got word that he is up on his weight so he is gaining. I called at 3am so I can't remember what the nurse told me but I remember he is up 20 grams so that's all that matters.

I know people have been asking to see Ryan and for pictures. We won't be sending out any pictures of him. It's hard because we want everyone to see him but he has a breathing tube and is so small. Maybe in a couple months we can share a picture. Just picture the cutest little man in your head with the most perfect feet and little body but with long fingers :). People have also been asking to come see him. As much as we want everyone to meet him visitors are only allowed for immediate family. He can't wait to meet everyone visit when he comes home in August. We can give him high fives and kisses from people though so just tell us ;)

Despite the longest day emotionally of my life, I got to hold my baby for the first time since he was born today. It was the best 5 minutes of my life. 

I'm blabbing, that's all for now! Fingers crossed for a better report at rounds today. 

Lots of love

Andrea Shawn and Ryan

Welcome

Hi Everyone, thank you for visiting. 

Shawn and I will use this to share with everyone how Ryan is doing and the ups and downs of our journey over the next almost 4 months until Ryan comes home. For those that don't know, Ryan was born May 1 at 8:37pm at 24.1 weeks. Little guy wanted out! He has changed our lives in so many ways we never imagined. 

Thank you all for your calls, texts, Facebook messages, we have received them. It's hard to respond to everyone and sometimes it's just hard to talk about. So please know we have read them all :) 

I have to admit I know I share a lot with those I am close with and I don't let a lot of people in outside of that tight circle so I am nervous doing this blog. I know it's for the best. With that being said, bare with me :) and I guess this is a warning because you are about to be opened up to my brain and how I think and our world as it is now. I never imagined I would ever be a NICU mom but this is my reality and I honestly wouldn't have it any other way. I have learned so much over the past.....yikes, not even 2 weeks. Shawn and I have said probably 30 times since Ryan was born that this oddly enough feels normal and right for us. Several people have said to us " I don't know how you are doing this" or "you are both so strong." Well, you go into survival mode. You take a step back, evaluate the situation and make a choice. Shawn and I have always been very open and real with each other. We know that experiences like this are all about perception. Yes we could be like whoa is me and we didn't deserve this and literally be miserable every second of this journey.  Shawn and I are so thankful that Ryan has opened our eyes to this world. I can't explain it, you have to experience it for yourself. We have met amazing nurses and doctors that have already changed our families lives forever. 

I could go on and on but I do want to leave you with this since it's 2am and I need some beauty sleep. I read an article  at 5am the day Ryan was born. Please read this and I hope it helps your perception of why "bad things" make good people stronger although I don't see anything happening to us in our lives as bad, 

http://elitedaily.com/life/motivation/bad-things-make-good-people/1012209/

Ok and one more disclaimer, I don't have the best grammar so just smile when I miss use then and than. It gets me every time!!

We are looking forward to everyone learning through this experience with us. 

Love Andrea Shawn and Ryan