I absolutely love my life, #blessed

A beautiful gift from Shawn's work in memory of Ryan. A play house for the local school in town. " Ryan's House"

 

 

I am a survivor. 

I never thought I would make it through 365 days of firsts but I did. I have to say, my husband is the only reason why. "Blowing off steam" was a regular thing for me, well, both of us. It will always be a regular thing, that's our new normal. Calling one another if we are apart and just staying on the phone until the wave passes.  I have read so many articles, have read so many books and met several people in our same boat over the past year. One thing that sticks with me is the nightmare that I am different now. Trauma is so isolating and it changes you. You are a different person and you become someone else besides yourself. For me, this has been my biggest struggle. I have lost great friends this past year but have gained amazing friendships that are rock solid. I understand that people don't understand what we have been through but that doesn't mean that it's ok to judge me, question me and think that everything is fine because of how I carry myself. Everyone has a story. Some people wear their heart on their sleeve. I am not one of those people. Before all of this, and even now, I could tell people I was so scared or nervous about giving a presentation for example. They would tell me they couldn't tell at all. I have always done well with hiding my feelings because I don't want people to feel bad for me. No one wants to be defined by their tragedy, nor should they be. So, you smile, you walk with confidence and then when you are alone or at home, comfortable, that is the time to crumble. I am telling you this because again, don't judge a book by its cover. Don't think someone is fine because of how they appear. I am sure as hell not the type to mope around wanting everyone to feel bad for me.

I'm sure you're confused why I titled this post what I did. I have such a rich and fulfilled life. When I think about it, it makes me cry. I often think how damn lucky I am to have an amazingly strong husband as well as such a tight small group of supportive friends, especially our family. It's amazing how you see, through an experience like this, who would do anything in the world to try to make you happy and you know those 4 people that when they say " call me anytime for anything even if it's 3am" you can feel the flutters in your heart of how #blessed you are. #blessed seems kind of annoying right? Like I often do, I read an article that talks about what exactly #blessed means or actually, the differences in the meaning for some people. 

http://www.desiringgod.org/articles/what-does-it-really-mean-to-be-blessed

For me, it's not any "thing" but a feeling of love and strength that I know I have from my tight circle. I would like to say that they is nothing more powerful than being able to talk with someone and have them listen. Not hear but listen and not feel like you're being judged. Shawn and I survived this past year from supporting one another. We never judge one another or question how each of us feel. Our marriage has never been stronger (Although I don't feel like it was ever weak :) ) I often think about how in love I am with my life. You're probably thinking again how can someone feel like that after what we have been through. I guess it's the power of love and how love can save us and make us better people. I understand how precious life is and what matters. Do I care when Trevor poops all over me or if we are late to something. Not at all. Do I care that I have had a really really really long day wth Trevor, for about 5 minutes. Then I remind myself how I would have killed for this last equate its Ryan. It's all about perspective. Am I upset that Trevor pooped all over me? No, I'm happy his bowels are moving. No NEC or  intussusception here, it's all about perspective. It's amazing the things people take for granted. I know this I surprising but I have learned to keep my mouth shut towards those people:) 

Shawn and I were fortunate enough to get pregnant right away (thank you Ryan). We welcomed Trevor Ryan on May 22nd of this year.  He came 4 weeks early but was healthy and everything has been going perfect. So we got pregnant right away which was amazing but very difficult at the same time. We were and still are grieving the loss of Ryan and had to now process bringing another child into the world. I remember trying to convince myself that everything will be ok. Yea....I was a wreck for 36 weeks until Trevor was born. It's amazing how many people acted like everything was totally fine now and this baby would make everything better for Shawn and I. That pissed me off. I hid my pregnancy from my family until I was 16 weeks, I didn't tell my team at work until I was 20 weeks and never told anyone outside of my team at work that I was even pregnant. I hid my belly in public as long as I could. I didn't want anyone to know I was pregnant because having to tell people I wasn't pregnant anymore after having Ryan early and then loosing him wasn't anything I ever wanted to go through again. I wouldn't wish that in my worst enemy. It was just easier this way to hide it. So many people didn't understand this. This was the hardest part- them not understanding. Well I should say, them telling me I should be happy!!!!! And that this is a blessing!!!! And it was meant to be. That phrase needs to be 86'ed. Thank you all of the Dr. Phil's of the world for your useless input and opinion that I never wanted. Moving on, that made me upset as you can tell....

I could go on forever about this past year but I did want to share this because I hope that if anyone you love or even know goes through something traumatic, I am asking you, please don't judge them or question their decisions. I can't tell you why I did the things I did on holidays or anniversaries. I was just trying to survive the day/event. Just listen when people need it and learn to bend and accept the new person that they may have become. Don't try to fix them. 

Trevor is a true blessing from Ryan. I cherish every moment I have with him. I stare at him, aaaaaa lot :) There are so many characteristics of Ryan that I see in Trevor. I know Ryan is here with us. Shawn and I are so thankful and are loving every minute of being a family of 4 :) 

Xo

Andrea 

 

 

Dear NICU Mom-

This letter is from me, Andrea Gagnon, a mom that had a baby at 24.1, that did everything right, sacrificed everything for the baby growing inside of me and still had a premature baby with no explanation. Read this letter and take this advice with an open mind and heart. It's honest feedback about what I have learned and how I survived 70 days in the most terrifying but best place for my child. 

The best advice I can give you is to grow a set. Sounds harsh but it's true. Your life is going to be borderline hell while you are a mom in the NICU. No one gets it except your partner and remind yourself of that often. It always made me feel better and that I didn't have to justify how I was feeling or the choices I was making. You and your partner are the ones that are talking at rounds everyday with the doctor, nurse practitioner, pharmacist, nutritionist, and nurse. You will need to learn to advocate for your baby but do so with respect and let the doctors and nurses help you along this process. Remember that you are a team. Yes you are the mom but you need to work together with your team in order to get to the light at the end of the tunnel. Trust is very important. Remember, doctors and nurses don't "know it all" and neither do you, so don't try to act like you do. I have always had a very good gut feeling and have learned to follow it. You should learn that too. You make the rules. Shawn (my husband) and I decided that only immediate family were allowed to come see Ryan. It's your baby and you do what you want. How a baby looks at 24 weeks is very different. I'm a psycho, private and protective person so I never sent out pictures besides to immediate family. I didn't show anyone what Ryan looked like until my baby shower when he was 28 weeks and it was on my phone, that I passed around to people with my phone locked so they couldn't see any other pictures. Told you, psycho, but I don't care. Oh yes and you will develop a thick thick skin. If you don't think your skin is getting thick trough this, try harder. Put your foot down and stand firm with your decisions. It will make this time in your life easier, yes it's possible. No one was allowed to touch Ryan besides Shawn and I. I'm a germaphobe so add that to having a nicu baby=psycho. Again our choice but you have to lay down the ground rules. If you don't lay down the rules you will end up doing things that you aren't comfortable with and you don't need ANY added stress. You will have enough of that, pinky promise swear to god. 

Find a nurse/doctor/NP that you connect with and respects you and your opinions. You aren't going to like all of the nurses and that's fine but click with one and make them your primary. Having that solid team is what you need. I liked honesty and those are the people I clung too. I personally don't want someone sugar coating information for my sick child that I'm trying to advocate for. If you have a nurse that makes you feel uncomfortable with the care that they give your child, speak up. Your child can't speak so you need to do it for them. I once had someone tell us they were "getting more experience with the critical babies."  I melted...she never took care of Ryan again. Not comfortable when he's so fragile. Ryan needed consistency so I made sure he got it. Ihad a favorite doctor. You should have one of these :) Yes I'm talking about you Dr. Bulanowski :) She was part of my A team. Everyone was excellent but you have to have an A team. It's normal. Oh yes and Mary was Shawn's #1....the sweetest soul. I could tell my A team anything and they always supported me.....and Dr. Soukup was my A team surgeon. Another amazing women. 

For the most part, everyone respected Shawn and I's opinions. When we had questions they weren't condescending and made us a part of the team. I would always tell them if I was uncomfortable with something and they would listen and explain things more with me. They were never too busy to talk. I know they loved Ryan and really truly cared deeply for him. He was very special.

The NICU is your second home so treat it that way. I always would talk with the nurses and tell them weird stuff but it helped make the situation lighter. Ryan's primary's, Kim Brooke Chelsea and Rachel , know more about me than they even care to know but most importantly they know I love coconut bark thins and every stupid thing  someone has ever said to me while I was pregnant. Haha! But they made everything better. I would have terrible days at the hospital and I would just sit in the room and they would comfort me. Some days I would talk their ears off for hours venting about how this was my life now. People say I'm strong, yes, but I was and still am a very very sad mom that has lost her son that brought me so much joy and purpose. I would always plan my days around Kim and Brooke's schedules. I'll never forget the day I decided that I wanted to spend the entire day and night at the hospital to be with Ryan. Brooke told me that she was excited since she was working 7-7 ha. We talked about weird things that day. But this is how a mom gets through her time in the NICU. You become a little weird :) Moving on from the A team.. I would always ask how people's weekends were and when they had a day off what they did. I took an interest in people's lives. I could tell you where just about everyone lives, how long they have been a nurse and how many kids they have. 

Click with another mom in the unit. I connected with a mom that was so so sweet and really cared about Ryan. Everyday she would ask me how Ryan was doing and I would do the same for her twins. She was so positive and helped me on my darkest days. If she was having a bad day I would give her the hug she needed. We have developed such a close bond and still get together. Her kids are so cute and getting so big! 

When they tell you that it's going to be a roller coaster, it's a damn roller coaster. What you are thinking in your head is that one day will be good the next might be bad. Kiss measuring your life by days goodbye , it has now changed to seconds. Your life can and will change in a second. It's difficult when people ask, how is Ryan doing today? My response was often " the last time I checked in he was doing ok". That wasn't a smart ass answer, it was the honest truth. Again, I am not kidding you, your life is now measured in seconds. Take my word for it. Savor every second you have of good in your babies day. The week before Ryan had passed I did a blog post asking who turned on the light switch. Ryan went from being in an isolet, no clothes, 4 lbs to a crib, being swaddled, wearing clothes, being held in Shawn and I's arms, eating, just under 6 lbs....just amazing. We were thinking few... FINALLY A BREAK. Then July 9th in the morning he wasn't acting like himself and within 24 hours we had to say goodbye. I don't want to go into the details of our life from 1030am July 9-1120am July 10th. But please, savor every second. It won't steer you wrong. 

Pumping is hard work! Mind over matter. Do the best you can and that's all you can do. The lactation consultant came into my room one day and told me I wasn't pumping enough " but she knows that Ryan isn't eating right now." I would Ignore these people but politely. Like I had said in one of my previous posts, nice people but evil job. Stay committed if you want to. Speaking of pumping I dropped off my milk that I was storing last Friday. It made me so happy to do this but it was very difficult. We drove it down since we had such a large supply and it was easier to drive down to Newton Massachusetts than ship it all.  I know that it was the right thing to do and to share the love with sick and premature babies. I keep reminding myself of that, and Shawn tells me everyday. I felt like I was leaving a part of Ryan there....and as Shawn reminded me, we were. The ladies there were so nice and gave us a tour of their facility. They could not believe how much milk I had and it was amazing to hear them talk about it. I told them my joke that " size doesn't matter" and they cracked up. They took our picture and one of the ladies was tearing us as I talked about Ryan to her. My favorite part was when I asked them if they wanted to see a picture of Ryan and their eyes lit up. That made me so happy. 

In the future, when I start producing milk I am going to donate to the milk bank again. I look forward to this and I hope others will consider doing this. The number of babies that you are helping makes all the time and effort worth it. Here is a wonderful article that was written by another mom that explain more about what a milk bank is: 

http://m.huffpost.com/us/entry/7953524

Back to NICU life. You will never sleep and you will want to punch so many people in the face. People point out how tired you look.  I loved when people would tell me "oh you look tired " or my favorite was " wait until Ryan comes home then you will really never sleep". Hey thanks I think I'll actually sleep more since I won't be traveling 30 minutes to see Ryan, working , pumping and having my life change Every second and maybe I'll try to eat in there somewhere. You will pull 16/18 hour days and never be home. Don't complain to anyone about how tired you are or about your life , except your husband and your mom. When you complain that opens up the door for people to give their opinion and that is the laaaaast thing you want. When I tell you people have no idea what your life is like in the NICU with a 24 weeker, they literally have no idea. They aren't 26 weeks or 28 weeks, they are 24. Even one day makes a huge difference. I had no idea what it was like until I lived it. I said that I wanted to strap a go pro to my head for a day so people can see what life is really like. Not so people would feel bad for me but so they had even an ounce of a clue of the emotional hell that we lived as a parent. 

Figure out how you want to communicate. I decided to do a blog. It has helped me so much with communicating how I'm feeling and saying whatever I want. You have to be honest with yourself though when you do a blog. You get back what you put out. I guess this is a good point to remind you to grow a set :) I'll never forget I was talking to someone maybe 2 weeks after Ryan was born and they said that they heard Ryan was doing so well  and he was off the vent and breathing room air. I we was so sad to hear this. I know they didn't mean anything by it but that was so far from the reality it made me frustrated that information was already getting around like this. I needed a way for people to hear accurate updates about Ryan without constantly asking our immediate family and so we could have a break. So a blog was born! I didn't share everything on this but what I did highlight surgeries and larger things that were going on. Not everyone needed to know he needed his fluids decreased since he was so puffy, his kidneys weren't working properly, his billy was going up and he needed to start eating so the billy would go down and he could take the octigal to help with that once his feeds were up but then he was on bowel rest since his belly was big....all within a 24 hour period. It's too much to keep everything straight between you and your husband if you both aren't always there so don't try to be a hero. It's a vicious cycle/ complete nightmare. Everyone just needed to know he was having his duct closed. Lol. You learn these things as you go along, less is more! 

Find the small ounce of good even in the worst of situations. My son passed away after 70 days. It breaks my heart into a million pieces that he is not here but I try to focus on the good. I won't go into the the details, refer to my last post about why I loved him so much, but it's true, you need to find the good. Change your mind set, ITS THE ONLY WAY YOU WILL SURVIVE THIS.  Have the attitude of asking what you need to do to move forward and support your child rather than dwelling on the why me!?!?!?! Don't get me wrong, I would sit and be pissed wondering why me, but it was a phase....and I would move past it. I would get mad that the mom's that make poor choices would say to me "oh I have no idea why I went into labor early." Learn to ignore these moms because they aren't fooling anyone. Repeat after me....I will ignore them. 

I am learning to get used to my new normal. When Ryan was born I had to get used to my normal then. I had a new home and a new routine, I was a parent. Now I'm learning to live life as a mom that has lost her son, with no explanation as to why I went into labor early, and working hard to get up everyday and put one foot in front of the other. No matter how someone looks on the outside, they are still hurting on the inside, forever. Ryan was so sweet, cute, and feisty. I will forever love my baby and am very lucky to have an angel watching over me everyday. There is actually no luck in Shawn and I's life, everything good is now sent from Ryan.....forever :) 

Xo

Andrea 

How did we get so lucky?

These are the words that I shared at Ryan's celebration of life on July 17, 2015.

I wasn't sure how I was going to write something for today so I thought I would treat it like I was writing a blog post. Like usual, the thoughts are scattered and the I's are we and the me's are us.

I often think to myself, how did we get so lucky?

 I want to start by telling you about how my morning went May 1st, the day Ryan was born. It's proof that God prepares us for everything in life and sometimes we can recognize it and sometimes we can't. God was preparing me for Ryan's arrival that evening since the second I woke up.  I woke up really early and was scrolling through Facebook. Someone liked an article that was titled "bad things make good people stronger". I texted the link to my mom and friend Melissa telling them how amazing the article was and to take 5 minutes to read it. Before leaving for work, I had Shawn take the normal 20 belly pictures since we forgot the day before and I was 24 weeks! Shirt up, shirt down, tank top only, to the left, right, you get the idea. On my way to work I stopped at my favorite place, the bakeshop on kelly street for a treat, it was Friday, why not,  iced coffee and a bagel sandwich. While I was waiting for my food a Middle Aged gentlemen began talking with me asking if I have ever been here before, have I gotten anything besides breakfast? I told him a cake and one thing lead to another he asked when I was due, is it a boy or girl, on and on. It was a really nice, refreshing conversation. The guy reminded me a lot of my dad. The guy ended the conversation saying that my husband and I were going to be great parents when the baby comes. I drive to work and as I'm walking in an older gentleman says good morning with a huge smile on his face. So sweet.When I got into work I was thinking how great of a morning I had and how those two gentlemen were so kind and made me feel so good about the day. I wanted to text Shawn to tell him. Then someone had tagged me in a video on Facebook that was parents being interviewed giving first time moms and dads advice on raising their child. I was in tears at my desk, the video was amazing. Perfect morning....I’m feeling great....Fast forward to 8:30pm that night, Ryan was born. God was preparing me for that moment since I woke up at 5am. 

The day before Ryan passed; I had left work early in the morning because I just wanted to be with Ryan. I couldn't be at work anymore. I spent almost 12 hours at the hospital that day and I'm so glad I did that. I had no idea what the next 24 hours had in store for us. 

When we first started this experience Shawn and I changed our mind set from "why us" to "ok what do we need to do, Ryan needs us to be strong." We did everything we possibly could to keep ourselves in good spirits. The nurses helped a lot with that. When Ryan had his first Brady- extra low oxygen and heart rate, I’m talking trickling down into the 40's, I turned white and my feet got cold. As they continued to happen you get more used to it, as weird as that sounds. The nurses would often say that Ryan was being naughty. LOVED THIS. Just made the mood a little lighter although he might need to be bagged ahhh a day in the life of a NICU parent.

A little bit about Ryan: If I could describe Ryan in one word it would be awesome. Sounds boring and cliché but he truly was awesome. He had the best personality from the day he was born. He was a ladies man, the nurses professionally argued over who would take care of him each shift. He was easy to please, leave him alone and keep his diaper dry. He was often described as feisty by others, I loved that. No one wants a boring kid. Ryan had 3 isolet and crib mates, they were aloshis best friends, pickles, spangle and 2%. He would let it be known when he didn't want to be touched and he loved when the room was pitch black. If a light was on, he would know. 

One of the greatest things about having a heart and oxygen monitor on Ryan was that you knew when he was happy and when he didn't like something. He had his favorite sleeping position, on his belly and if he was ever on his back, he needed one arm out. He liked lying on his side, but not facing the door. He was hilarious. When Shawn would hold Ryan he would run his beard on his head, as Shawn would call it comb his hair. And after that, when Ryan would have hands on, the nurses would comb his hair with an actual comb. He loved it! I know on the blog I said Ryan had blue eyes, we actually discovered last week that they were brown, exactly the same color as his dad's. Ryan had soccer legs and basketball hands; this isn't a joke, a perfect mix of his mom and dad. I was telling one of the nurse practitioner's one afternoonabout Ryan's soccer legs since he had grown so much since she last saw him. She turned to him and said "no pressure" Ha. We joked a lot! He would kick....hard....when his diaper was changed. I always said we were in for it when he hit 7 pounds. Ryan slept a lot! When we would get to his room we would always said hi and lift up his face cover. Ryan knew our voice and would always just crack his eye open just enough to let us know he heard us. This was one of my favorite things he did. Ryan loved holding Shawn’s finger, particularly his pinky. 

We had our jokes, you know your baby is a preemie when you brag when he gets man boobs. When Shawn would recline back in the chair while holding Ryan he would open his mouth and say grapes please. The nurses would ask us if they could get us anything once we were settled to cuddle Ryan and Shawn would always say, a pizza or some type of food. When Ryan was fed, Shawn would always ask Ryan if he was ready for his vanilla milk shake. I could go on and on…

Shawn and I are so proud of Ryan. Ryan knew love and that is the best gift that any baby or life could ever receive. We are so thankful we got to hold Ryan as he passed, say our goodbyes and have him baptized. It could have been different. Ryan had 3 major surgeries that he made it through. I told myself I would never complain about anything after seeing what Ryan went through. He showed us what true strength and determination were. He really was so strong. 

Shawn and I were proud to be NICU parents. I was proud that we were there every day.  I was proud to say we were in Boston for a short time. Shawn and I said while we were down in Boston that it will be nice to share our experience with others one day that have to make the scary trek to the city. We looked at it as another badge of honor for us. 

Shawn and I are forever thankful for the staff at the Elliot NICU. They welcomed us from day 1 and provided 5 star care. Besides being my therapists while I was there, they were adoptive moms and grandmothers. They cared for Ryan like he was their own child. As difficult as it was to leave Ryan at night, we knew he was in good hands. Ryan had rules he had to follow in order for us to leave for the night. His oxygen level needed to be in the 90's and his eyes needed to close. He knew when we were leaving and would always stare at us, so fresh.  The nurses would hold Ryan's pacifier for him for hours, talk to him and read to him. 

Truly....Thank you all from the absolute bottom of our hearts for the prayers, donations, flowers, messages, and texts just telling us you were thinking of us. We were able to spend every minute we wanted with our son Ryan because of all of you. That is how we got through the last 70 plus days.  Every single person in this room is special to Shawn, Ryan and I. 

We are so thankful for every single person we met while traveling down this path in life.....the Elliot NICU.....walking angels...Shawn and I have a guardian angel for life...Ryan, we love being your parents...thank you for making me a mom.....so again I ask myself, how did we get so lucky?

This is the story that was shared at Ryan's celebration. This was Ryan's purpose on this earth. 

The Brave Little Soul

By:  John Alessi

 

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts". The little soul was confused. "What do you mean", he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love.  I tell you this, it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer, to unlock this love, to create this miracle, for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.

Thus at that moment the brave little soul was born into the world and through his suffering and God's strength he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys.  Some regained lost faith, many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever.  It was good.  The world was a better place. The miracle had happened.  God was pleased."

The best 70 days of our lives

Ryan passed away late Friday morning comfortably in my arms and with his dad by his side rubbing his head and holding his hand. Ryan had an infection that came on quick, that made us have to say goodbye to him in the fastest 24 hours of our lives. In is final hours we had Ryan baptized and Shawn got to hold him during this time. We are so thankful to have been able to spend the last 70 days with our son who has forever changed us. He knew our voice, our touch and had the best personality. Everytime we were there with him he would high stat and be so happy. He was so strong through all of this. The hurdles he had overcome the past 70 day are amazing. In our 70 days together we got to celebrate our first Mother's Day and Father's Day with Ryan as our son. We love being your mom and dad Ryan, forever.

The NICU team pulled 30 hour shifts from Thursday to Friday to care for Ryan. They put their families aside to put us first. It's more than just a job for everyone in that unit and we know that in our hearts. The love and compassion that each and every single person there has shown our family is something we will never forget, especially towards Ryan. 

Thank you to everyone that has supported us during this time. All of the help that we received allowed us to focus on Ryan and enjoy every second we had with him. 

Until we meet again our sweet baby boy...  You will always be with us and forever loved.  Love Mommy and Daddy

This is the last post for this blog. This will be made into a memory book for Shawn and I to always have... to look back. I have hundreds of bottle of milk in our freezer. I will be donating all of my breast milk to the national milk bank to help other babies and moms. I am so proud of this.

Who turned on the light switch (I'm not complaining)

I feel like since July 1st a light switch was flipped. Ryan is now in a crib, no more isolette, wearing clothes, eating, and can be swaddled. There are still on going issues that need to be worked out but overall doing very well. We are still taking it day by day around here. This weekend was really nice to spend time together, Ryan, Shawn and I. Shawn and I were able to enjoy our pool for a couple hours and grill, a small window of normalcy has never felt so good. Shawn and I gave Ryan his first full sponge bath from both of us since he was born. The last time I gave Ryan a bath he was a week old and just over a pound so I felt a lot more comfortable this time around.  Who knew bathing a 4 1/2 lb baby would take an hour lol! We were getting every crease and in between a couple rolls he has, I even took a Qtip to in between his cute toes.

This morning when I was talking with a nurse while holding Ryan's hand I told her that Ryan has been through hell and back and I'm so happy he is, for the time being, catching a break. The nurse looked at me and said "and you and Shawn have been through hell and back." I try to stay positive through this entire thing but it actually feels good to say out loud that we have been through hell. I do a good job to keep a straight face walking around even when I have felt like we were at rock bottom. I don't want to make people upset letting them know how bad and difficult things have been. It's easier to keep things to ourselves. I always try to tell myself though that things will be better and Shawn reminds me of that everyday. We appreciate every second of good when we have it, even if it is in fact for 10 seconds.

Last weekend Shawn and I grabbed a bite at Billy's before heading home. There was this little boy that was sitting behind us and he was bouncing around in the booth. The Dad apologized to us for his son being loud. We did not care one bit. That night/3am I saw a post on the NiNi Bambini facebook page that said "Nini community a fellow mom needs our help" I recognized the young boy so I clicked the link. It was a go fund me page with a family picture with the young boy from Billy's. His mom was 24 weeks pregnant with their second baby. She was having some complications and she was out of work earlier than expected and the father was also recently out of work from a surgery. Long story short, the doctors had to get the baby out so they had her go into labor. In a weird way I was so excited that another 24 weeker Mom would be in the NICU with me. Shawn and I were looking forward to bonding with another family that would have been going down a similar path as us. Even when someone has a baby at 28 weeks, it's not nearly the same. I kept checking the page to find updates and eventually they did post that the baby did not survive, just over 1 pound. This hit Shawn and I hard. It was a reminder for how lucky we are to have Ryan in our life. When you have a baby at 24 weeks the chances of survival are slim and as a the days/weeks pass, the rate increases. I am so proud of myself for being so disciplined during my pregnancy that Ryan was so string even when he was born at 24 weeks.

It felt so good this weekend for Shawn and I to hold Ryan like a real baby.

I'm hoping tonight we can lite our giant neon sparklers we bought this weekend for the 4th. They have been staring at us for 4 days on our kitchen table.

xo- Andrea Shawn and Ryan

Everything comes in 2's and sometimes 3's

This was a week we all deserved! Ready...set...go! Ryan's eye exam went well, he stopped 3 medications, he turned 2 months old, he hit 4 1/2 lbs, he pooped and now he is eating 3mls of breast milk starting last night!!! We deserved this!!!! You know he's been through more than the average bear when everyone in the NICU tells you he has been through a lot since he has been on this earth. So strong this boy! He has already taught us so much about life and unconditional love. 

Ryan would have been 33 weeks today. You know what, I'm going to stop counting like that and just say that tomorrow he will be 9 weeks. I need to focus on one number. 9 weeks, WOW! 

A few thoughts over the past week: 

1. My cousin Theresa is amazing, she has coordinated food from my family to be brought over every week, when Shawn and I come home the food is in the fridge, cleans my house, and every time she comes over she brings flowers that her kids have picked for Shawn and I (aka weeds in a vase) and a picture or card to give to Ryan. The sweetest!!  My favorite part are the weeds, so thoughtful and hilarious. Long grass and those little white flowers that grow in your yard brighten up my kitchen :) It's the little things. 

2. What a great week at work. Thank you all for being so wonderful about my request to be normal. This week was a normal week at work for me and man it felt good!! 

3. Lactation consultants; although nice people, evil job. When you are in the NICU they like to check in to provide support if you need it the entire time you are there. What they really want to get out of you is how much you are pumping a day. I told the lady I don't know, even though I did, and she asked me to estimate so I did. I also told her I do my best with pumping and I don't really keep track because if I do I will make myself crazy with what "amount" I should be getting a day. She did the "math" which I think is a bunch of bull and she proceeded to tell me I was making less than what I should. I was down in the 550's and should be in the 700's by now. I just said ok but the lady reassured me before she left that she knew Ryan wasn't eating right now. Thanks lady...I feel better now! So now I see how moms stop doing this because they make themselves crazy with how much they are getting. I am competitive so that doesn't help one bit. I give myself a pep talk everyday that I am doing the best I can, I get up every 3 hours, sometimes 4 at night so I can get more than 4 hours of sleep, I am working full time, I have a baby in the hospital that I live 30 minutes away and I pull 15 hour days away from home.  This is one of those things you just nod and smile when they come talk with me. I know I'm doing the best I can no matter what anyone says about anything. 

Looking forward to enjoying our pool and some lobsters this weekend. That's the goal atleast. 

Xo Andrea Shawn and Ryan 

First eye exam...check ✔️

Count it! Ryan (and his parents) caught a break! He crushed his eye exam. He did so well  and I'm very thankful for Shawn who help Ryan's hand while I sat in the hallway trying to collect myself. I tried hard to be strong and watch it but I spared everyone and stepped outside when I got hot, my feet got cold, and I felt like I was going to puke. When I saw his heart rate equal his O2, see ya in a few! Lol Thank goodness Shawn can deal with that stuff. Like the time they were trying to find a vein for an IV. I was holding his hand and the nurses kept saying "mom are you ok, mom are you ok" yup I'm fine....20 seconds later,mom you ok, yes I'm going to do this....and then um I think I need to sit down. Darn it! Well I tried and that's all that matters! Anyways....Ryan was at stage ZERO for his eye exam which is good. No issues for this week. He will have an exam every week for awhile, fantastic. Maybe next week I'll try to watch. Dr. Gold was wonderful and the first thing he said when he was about to put the eye drops in Ryan's eyes "boy he's fiesty huh?" First thing I thought of is, this guy is smart and knows Ryan well already. If you can't pick up on that about him while working with him, you have a problem lol. 

Goal of the week, take a poop and eat some food. 2 things that I will pop a bottle of champagne or chug a beer for when they happen. Today is day 42/42 of his antibiotics so 2 less mess after today...amen!!!

Ryan is 4 lbs... Crazy crazy I can't believe it. A fun fact for the day, when Shawn holds Ryan he brushes his hair with is beard. Now Ryan loves having his hair combed when he gets his hands on. Temperature, clean his mouth, change his diaper and a combover.....So cute! 

It's ok to act normal

As I end my second week at work it's been difficult to say the least. It's ok to not ask me how Ryan is doing. I actually would prefer it. People at work have been great but I think everyone has gotten the initial " welcome back, how is Ryan doing" out of the way so let's get back to business. Work has been a great distraction for me. It is hard when people treat me differently now when they see me. They have a sad look on their face, act super extra nice or give me a pathetic look. I don't want to be treated differently. I know everyone cares and wants to know what's going on but it's exhausting to talk about. I breathe is every second of my life and to not talk about it even for 5 minutes is refreshing. So please, I know everyone cares and is interested but use this blog to check in on how Ryan is doing. I write this to share with everyone how We are doing. And remember, even if I say Ryan is doing well today, it doesn't make all of this any easier. Everyday is a huge mountain that my family is climbing and We are extremely thankful for everyone's support to help us climb upward.

A couple of pictures to end the week. Happy 8 weeks to our sweet sweet Ryan who amazes us everyday.

Xo Andrea Shawn and Ryan 

Exploritory surgery...check ✔️

Yesterday morning was one of the hardest things we have been through. It was intimidating when Ryan's room became an OR and there was a path to walk in to give him finger kisses before a big surgery. It didn't help that he was ticked off since the OR team had to keep touching him and if I haven't said this before, Ryan is very sensitive and he hates to be touched. It ripped our hearts out telling Ryan how great he was going to do while he turned beat red, squirmed and you could tell he was trying to scream bloody murder. It was the hardest thing leaving that room but he Kim was his nurse that day thank goodness. I know she took care of him like he was her own child, she always does! 

Ok so now that the scene has been set, moving on to better things :) The surgery went well and Ryan had intussusception. Google it, you have my permission. The surgeon had never experienced this with a preemie before so they were surprised with the outcome. 1 out of 1,000 preemies have this. Pretty rare. That's Ryan for you, always keeping everyone on their toes. A nurse yesterday said that Ryan hasn't been following the rules or the plan for preemies. All I could think of is how Shawn and I really have our work cut out for us when he comes home :) OH Well!  

Looking forward to getting some much needed rest the next few days and getting Ryan back to feeding and growing. 

Hopefully back on track!

Xo Andrea Shawn and Ryan 

Tap tap tap

Don't mine me I'm just patting myself on the back for surviving this week. Now I know what Shawn has felt like trying to balance work and a baby in the NICU the past month (minus the pumping part). 

Ryan is doing ok this week. He is scheduled for a bowel exploritory surgery on Monday morning. He has a lot of air in his intestines and isn't pooping so we need to figure out what the problem-o is. A little cut above his belly button and some peaking around will hopefully fix the problem. His surgeon is going to do a great job. He might have his eye exam this weekend.  Sounds easy but the other nicu moms have said that this is traumatizing to watch. And if the strongest moms in the world are saying that then I believe them. They put a metal spring thing to expand the eye and this rounded spoon to look around the entire eye....yea I don't get it either.  So we are preparing for a busy weekend and week. 

Ryan is 3 lbs 5.9 ounces and 13 1/2 inches long. Getting big! 

Happy 7 weeks Ryan! 

Xo love Andrea Shawn and Ryan 

Also as I finish up this post Saturday morning this is what Shawn is doing at 630am while blasting raggea music that reminds him of our honeymoon-ja cure....Time is precious around here! The pool was crystal clear yesterday! 

Back to life....back to reality

Back to reality is right. Today was my first day back to work and the day went really really well. It's always overwhelming anyways coming back after being out from a vacation never mind having a baby unexpectedly.  I only had almost 200 emails that I needed to really read and make sense of ( thanks boss for deleting the junk otherwise I would of had 1,000+ and I probably would have turned around and walked out for the day lol) I'm sure there were 75 reminder emails in there from Chet about rising stars and pizza :) Thank you to those that stopped by my desk to welcome me back. Also thank you for the texts. It made me smile when I got them that you thought of me!  I was reminded today how lucky I am to work at such a great place. Below is a picture of the beautiful flowers from Melissa, light pink peonies, my favorite. Oh yes on that note....I put the flowers on the floor in my car and had to slam on my breaks behind an awesome driver in Manchester on bridge st. The entire thing tipped over and I think a gallon of water spilt all over my passenger side floor. Oh well, the floor needed a good washing anyways. I know my priorities have shifted when it didn't even phase me that I dumped the water! 

Ryan is 3 lbs today!!! Shawn got to snuggle with him tonight. His legs are starting to really look like soccer legs....yessss! And he has Shawn's ears we all confirmed, attached earlobes and all. Shawn learned what these were tonight. His belly is still big but overall doing well. Once the belly is fixed then we can work on the lungs and hopefully take out his breathing tube.  

Xo Andrea Shawn and Super Baby

Don't google it

One thing I have been very good about is not googling terms and issues that I have been told Ryan is dealing with. I am so proud of myself for this since it's so easy to google something these days. Google is amazing but it can tell you things like having a cough means you are going to need your left arm amputated. It's a slippery slope and I promised myself I wasn't going to fall down that. I have to remind some people--wink wink--- you know who you are, to stop googling things. I only use google to find out what slang words mean that the nurses and docs use. I base my questions and judgment off of the doctors reports and facts. No need getting myself all worked up over google saying Ryan will grow a third arm because he has dirty blond hair :) 

Since Ryan has been "home" ( I never thought I would call a hospital a home) he has been doing very well. He is like a new baby since having his heart fixed. The blood is going where it needs to go and things, for today, are back in track. Next mission, get his big Buddha belly down. He has a lot of air in his bowels so we are hoping that deflates soon. I will miss rubing his belly asking the nurses what their wish is when it's gone ;) 

My new favorite thing that Ryan does is he opens his eyes when we talk to him. It's so sweet and it makes me feel so good knowing that he knows that we are with him. Every nurse has greeted us back from Boston. Ryan is 2 lbs 13.5 oz and is getting so big!  Ryan loves sucking on his paci. He can't hold it himself in his mouth so someone holds it in there for him. Somehow he suckered one his primary night nurses to stand for an hour holding it in his mouth this morning. I say an hour but Rachel wouldn't tell me really how long ;) she said she loved doing it. Again, why I love this place. 

Ryan has had about 6 or so blood transfusions over his 6 weeks of life. I did want to mention that when babies are transfused they are only given O negative blood. If you have O negative blood you have probably saved several babies lives like Ryan's so thank you for donating!! 

This is a bitter sweet next couple of days for me.  One of, actually my only mom friend here, is bringing her other twin home tomorrow. I'm so happy for her. One of her babies went home last week so now they will be together again. She is a pleasure to talk with and I'm looking forward to keeping in touch with her after she leaves. Rachel's mom made these hats for Ryan. One has a blue heart on it and yup..... that's a football on the other. So thoughtful :)

Happy 6 week birthday Ryan!

Xo Andrea Shawn and Ryan 

Ryan is back in NH 😊

A baby shower without a belly

Yesterday I had my baby shower and I could not have asked for a better day. I was excited, nervous, anxious...just a mix of emotions for the day. When I walked in the room it was exactly how I pictured it. All of my close friends and family that care so much for Shawn, Ryan and  I. Perfect company that made me feel so comfortable with a different take of a shower. Of course we all imagine that we are going to be large and bending over a huge belly trying to reach for gifts. I already had my maternity maxi dress picked out before Ryan was born so trying to find a regular dress to wear was hard. Anyone that knows me knew that I absolutely LOVED being pregnant. It's been very hard letting this part go but yesterday I feel like I made it over this hurdle. I truly can not thank everyone enough for such a wonderful, normal but extra special day. No one cared that I wasn't pregnant. Everyone was there to celebrate Ryan and that's why it was so perfect. I hope everyone enjoyed themselves as much as I did. 

Shawn and I are hopefully making our last trip down to Boston today. I'm happy the sun is shining, it makes the drive 1,000 times better. Ryan is a whole new baby since his surgery. He responded very well to the PDA closure and everything for the most part is back on track. His heart is pumping blood throughout his body to where it needs to go----Good job heart! Ryan was cleared to come back to NH last Friday but he needs a team to bring him back. Looks like that will be tomorrow. Fingers crossed. It's my last week living as a nurse/doctor/mom. Next Monday I'll add case manager to that list.... Sigh. I'm looking forward to getting back into the swing of things and my old routine, minus the gym :( I miss all of my fortitude friends. I'm hoping to get back for 2016. That's my goal :) and to be able to do just one pike and a push-up in the straps lol. Baby steps ;) anyways only about 5 people will get that haha. I'm curious to see how it will play out balancing a baby in the NICU, pumping and working full time. I consider this a challenge. ...That's the competitive side in me. I know it will all work out. I mean, I gave birth without the class and alot earlier than planned and I survived ;) 

That's all for now. Maybe today we will treat ourselves to a lobster tail and a cannoli at Mike's Pastry. 

Hope everyone enjoys their day and happy 5 weeks to Ryan last Friday! 

Xo Andrea Shawn and Ryan 

PDA surgery...CHECK ✔️

Finally finally finally. We can check this off the list. Ryan had his surgery tonight and it went well. He crushed it... I'm not surprised. We waited very patiently for his turn in line for the surgery, almoat 3 days but who's counting, WE ARE! Wow what a looooong past 3 1/2 days. The surgery team today kept telling our nurse that they would be "right up for Ryan" for 2 hours. The NP said that the entire NICU should give them a standing ovation when they walk in the door. Frustrated mother or just typical Me said " we should just all yell FINALLLLLLLY when they show up. The nurses were pissed off that the OR made us wait since Monday for this. Oh we had some laughs today with the staff. Ryan had the same nurse the past 3 days, Amra, she was so so sweet. She signed up to be his primary if we ever come back or are still there when she is back on next wed. I like it in Boston they have been giving him great care but I want to be back home. She told us it was nice to care for a "normal family." Haha oooooookay. And after being at children's I can see why ;) 

We left Ryan tonight with a ton of finger kisses all over him. We will see you tomorrow sweet sweet boy...

From 93north-

Andrea Shawn and Ryan 

This one goes out to Ryan's NICU team back home

Vent session/post::::

Well today was fun....not. We are down at Boston Children's Hospital. We came down yesterday afternoon and have been lucky enough to stay with my uncle for a few nights. Ryan was supposed to have his heart ligation surgery today. We waited alllllllll day for a time. We thought for sure it would be today since that's what we were told. It started with "oh he will be the first case so that's why we are calling you at 2am for your consent for the surgery... sorry to call so late" to " we still don't have a time" and then at 4:15pm we got the lovely " so the surgeon just called and they can't get him in today. An emergency surgery came up and pushed him to POSSIBLY tomorrow." Awesome! Well Shawn and I enjoyed the view in the main lobby of the hospital for about 5 hours today since we can't stand in Ryan's room all day otherwise our legs would fall off. There isn't much of a family room but two or three uncomfortable chairs up against the wall.  

Ryan is doing well but he misses his team. The nurses here so far have passed the Andrea test and have been great but still no one beats his team back home. Ryan (and Shawn and I) miss you all. It's not private here, everyone is moving a million miles a minute and they just haven't been with Ryan for the past 30 days. We can't wait to get back to our home away from home!

 Love from Boston

Andrea Shawn and Ryan 

Comments

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