Love Makes a Family

This post has been a long time coming.  John and I have been waiting for the right time to announce that we are in the process of adopting a baby.  We don't know when our family will be growing or by how many, but hopefully sometime in the next year or so we will get to bring a baby home through the adoption process.

I know for some people, this would be a hard decision, but for John and I, adoption just seemed like a natural next step for us.  For several reasons having another biological child just isn't a great option for us right now.  It's not completely off the table for the future, but right now, it just isn't a path we want to take.

Adoption has actually been on our hearts for a while now.  As I mentioned in my last post, we had gone through about 8 months of infertility treatments and procedures before we got pregnant with Rowan.  After we decided to stop treatments to relax and take a break for the holidays, we discussed multiple times what we wanted our next step to be.  At that time, we really started to think about adoption... and then, surprise we found out we were pregnant.  Then Rowan came early... and then he died.  We were once again back to square one, but without some of the options that we had before.

On our way home from Kansas City the morning after Rowan passed away, John and I both looked at each other and said that we wanted to adopt.  We've been thinking about it and praying about it since that day.  We know we could wait a little longer and try for another baby, but after having 35 days to be parents, we realized just how awesome it is and we're ready to bring another baby home as soon as we can.  So, at the end of July we finally took the plunge and officially started the process.  We decided that we want to adopt a newborn and we started gathering all of the necessary paperwork to begin the home study process.

As of today, we are waiting on a couple of logistical items and then our home study will be complete!  We have an appointment to meet with an adoption attorney in Topeka on Friday afternoon and I'm in the process of creating our adoption portfolio.  Once all of our paperwork is in order, then it will just be a waiting game.  We know that this process can sometimes take a long time and that it could still involve some heartache, but we truly believe in our hearts that this is the right step for us.  We contemplated when the right time would be to share that we are adopting, but a lot of adoption is just getting the word out there that we are looking to adopt.  Many adoptions happen because somebody knows somebody who knows somebody else that is looking to find adoptive parents for their child, so we decided now is the right time and that this blog is just one more avenue to get our names out there.  Our families have supported us on this decision from day one which we are so thankful for and as always, we appreciate your prayers and all of your well wishes.

Wave of Light

So, there's this club.  A club that 3 years ago, I was only vaguely aware of.  A club that nobody ever wants to join.  A club that John and I have now joined four times.  It's the club you join when your child dies.  Today, October 15, we recognize all the women and men, moms and dads, grandmas, grandpas, aunts, uncles and friends who have been affected by this club.  Today, we remember all the babies that are no longer with us.

As I sit here in a quiet house writing a post that I've been writing in my head all week, I can't help but think about if the events of the last 3 years would have turned out differently.  What if that first pregnancy, the one that we waited for for a year and a half, hadn't ended abruptly in July of 2013 at 12 weeks when we found out there was no longer a heartbeat?  Would I be chasing a 2.5 year old around the house instead of watching/listening to a Harry Potter movie that I've seen dozens of times?  

I don't know the answer to those questions or why we lost that first baby, and I never will.  But, I do know that if we hadn't had that first miscarriage, we wouldn't have been pregnant again that winter.  We wouldn't have spent 8 weeks worrying and wondering if we were going to meet the same fate.  We wouldn't have known how to deal with the heartbreak of another miscarriage which came at the end of February 2014 only a few weeks after our first baby would have been due.  Without those two miscarriages, we may never have known that I have a blood clotting disorder that can cause miscarriages and complicated pregnancies.  

If either of those pregnancies had been successful, we wouldn't be where we are today.  We wouldn't have gotten pregnant again and held our breaths through the first 13 weeks until we were finally "in the clear" for the first time.  We wouldn't have finally had the chance to get excited at the idea of bringing home a baby.  Third times a charm, right?  We wouldn't have sat in that ultrasound room and heard "There is something wrong with your baby's brain" and "In all my years as an OB, I've never seen a baby with this condition survive."  We wouldn't have spent the next 11 weeks not knowing when our last day with our baby girl would be.  We wouldn't have said hello and goodbye to our sweet girl, Hope, all at the same time. 

We lost Hope, but without that loss, we wouldn't have had our sweet boy, Rowan.  We wouldn't have gone through 8 months of infertility treatments and procedures.  We wouldn't have hopelessly decided to stop treatments and pursue other ways to add to our family.  And we wouldn't have fallen in love instantly when the test miraculously turned positive the following month. We wouldn't have been told that everything looked great with our baby boy.  We wouldn't have started making plans for a nursery because for the first time, we weren't worried that we were going to lose this one.  Our hearts wouldn't have dropped into our stomachs when we found out that we were going to meet this baby boy a whole lot earlier than planned.    Without all of our losses, we wouldn't have known how precious the tiny life that we had been given really was.  We may not have been truly grateful for every. single. moment that we got to spend with Rowan.  

I write all of this today, not for sympathy or personal attention, but to bring awareness to the fact that this stuff happens.  1 in 4 pregnancies in the United States end in loss.  1 in 4.  Yet, we still don't talk about it.  Why?  Largely because it makes people uncomfortable.  But really, talking about it makes those who have been through it feel like they aren't alone.  Losing 4 babies sucks.  It sucks big time, but hearing that I'm not alone and communicating with other women and families that have experienced the same loss has been so healing for me.  I've had friends of friends of friends reach out to me through social media and this blog that I would never have known if it weren't for our four angels.  We don't stop talking about people who pass away as adults or after having a chance to live their lives, so why do we stop talking about these tiny lives once they are over?  They aren't any less important.  They may never have breathed a breath of air in this world and they may never have gotten to come home from the hospital, but they still existed.  We need to speak their names and we need to remind their families that we remember them and we love them and we won't ever forget them.  

Do I wish that I wasn't in this unspoken club?  Absolutely.  If I could turn back time and change the way things happened, would I?  I don't think so.  These babies have changed our lives and they have changed it for the better.  We have a much stronger marriage because of all that we have been through.  We have leaned on one another and helped each other through what has truly been the worst 3 years of our lives.  But there have been rays of sunshine in the midst of all of the darkness.  We've joined a church and welcomed Christ back into our lives in ways that we maybe never would have if we hadn't driven a few blocks down the road to try and find answers and hope when we were at our lowest.  We wouldn't have met some of the greatest people who we are now lucky to call our friends.  We wouldn't have two amazing ministries at two different hospitals to help others who walk this road.  We wouldn't have realized that things can change in the blink of an eye and as cliche as it is, that tomorrow isn't guaranteed for any of us.  We wouldn't be who we are today without our babies.

So, please join me in lighting a candle at 7 p.m. this evening for all of the babies who are no longer with us.  Not only for the Pryor babies, but for Sam, Preston, Julian, Kaden, Griffin, Kennedy and so, so, so many more.   You will NEVER be forgotten.  <3

Back to KC

On Friday, John and I went back to Kansas City and back to Children's Mercy for the first time since we left on June 1 without our sweet Rowan.  Going back to the place that our baby boy died was not easy to do, going back because we were getting his autopsy results made it even harder.  We met with the Chaplain and Dr. Sharma in a small conference room.  I'm really glad we didn't have to go back up to the NICU.  We've now been back to the NICU in Topeka a couple of times, but there's just something about the KC NICU that instantly makes me anxious.  I can say with complete honesty that I hope I never have to walk through those NICU doors again.

Anyway,  we now have Rowan's autopsy results.  When he passed away, they suspected it was from infection.  Because everything happened so fast we were encouraged to have an autopsy done to try and find some answers since nobody was really sure what happened.  In the autopsy they found that Rowan contracted a pretty yucky pneumonia virus in his lungs.  The doctor suspects that he probably had the infection for several days before he passed away, but the antibiotics that they were using to treat the suspected NEC were keeping it at bay.  Those antibiotics were also hiding the virus in all of the blood tests that they were doing to check for infection.  When Rowan finished that round of antibiotics and they stopped giving them to him (because he wasn't showing ANY signs of infection), the pneumonia reared its ugly head and took over.  By the time it was obvious that he had another infection, the pneumonia had gotten so bad that the antibiotics couldn't treat it fast enough and there wasn't anything they could do.  The type of bacteria that he had is common with patients who spend a prolonged period in the hospital and he was just too weak from fighting all the other infections to fight this one.

It was hard to hear this information, but we are so glad that we didn't hear the words "we should have caught this" or "we missed this."  There was nothing that could have been done differently and honestly John and I are really at peace with what happened.  Don't get me wrong, IT SUCKS, but we have no regrets and we don't place blame on anyone.  We just miss our little boy.

We spent about an hour at the hospital visiting with Becky and Dr. Sharma and getting some paperwork that we needed to take care of some insurance stuff and then we headed back home to complete another task that we were both dreading.

When we originally came home from the hospital, we put all of Rowan's stuff (blankets, hospital stuff, gifts, books, etc.) in our spare bedroom.  Up until Friday, we hadn't yet mustered up the strength to pack it all away.  When we scheduled the meeting for the autopsy we also decided that it would be the day that we packed up all of his things so that we could get all the not-so-fun stuff done in one day.  So we came home, brought all of his things to the dining room table, sorted through it and packed it away in totes.  We now have a tote of books and a tote of blankets/clothes/stuffed animals for our future children, a tote of things that will forever be "just Rowan's" and a fire safe packed full of things that we can't duplicate if something happens to them (footprints, pictures, special things from the hospital).  It was incredibly tough to go through it all; lots of tears were shed (and a few beverages of the adult variety were consumed), but I'm glad we got it all done.

We have officially closed this chapter of our lives, but it will forever be one of my favorites because it's the story of our sweet baby boy.

Thank you to everyone who has sent items for Rowan's Wraps.  We know that they are getting used and we are working on getting more bags ready so that they don't run out.  We also have some other exciting things in our future that we can't wait to share with you guys.  I will be changing the name of this blog.  All of the posts about Rowan will still be here but it will have a different name and web address.  We want to continue to share our story and some updates with everyone, but moving forward things aren't going to fit under the title of "Rowan's Ride" anymore.  I'll keep you posted on the changes and I'm hoping I can somehow make it so that it links the old blog address to the new one so that we don't lose any people that have been checking in on us.  :-)

I hope everyone has enjoyed their Labor Day weekend... I better get back to grading papers and doing lesson plans!

Rowan's Wraps

Today is a "Shoulda, woulda, coulda" day.  Today should have been Rowan's due date.  There are so many things that I wish we would be doing today or that we could have done in the past few months.  Though I am back at school and we are both back in our daily routines, things just aren't quite the same.  

In honor of Rowan's due date, John and I would like to share the project that we have been working on.  After we lost Hope, we starting "Hope's Hugs" at the hospital in Manhattan to provide blankets and some other items to bereaved parents.  We feel it is only right to also do something at Stormont Vail to honor Rowan.  We are starting "Rowan's Wraps" and we will be providing hand made blankets, books and notebooks to parents and babies in the NICU at Stormont Vail.

We received several prayer shawls for Rowan when he was in the hospital and they brought great comfort, especially as we wrapped him in them on his last day.  The blankets that will be part of Rowan's Wraps will be prayed over before being taken to the hospital so that the families that use them have a little extra love with them.  We also loved reading books to Rowan and we would like to include a children's book with each bag.  Reading to babies benefits the babies greatly and John and I found it to be a great benefit for us too.  "The Little Engine that Could" will always and forever hold a special place in our hearts.  The last thing that will be in the gift bags will be a notebook and a pen for parents to take notes in, record milestones, and write down any other important information.  The notebook that we had proved to be such a great resource especially once Rowan was transferred to Children's Mercy.

John and I have gathered enough of the above mentioned items to take about 10 bags to the hospital next week, but we know that they will probably go through them pretty quickly as a lot of babies go through the NICU.  That's where you come in!  If you would like to donate knitted or crocheted blankets (receiving blanket size) we would gladly take them.  They will be prayed over at either our church (Wamego First United Methodist) or the Keats-Riley Methodist Church in Riley.  If you're like me and you don't know how to knit or crochet, we would gladly welcome donations of yarn, children's books, or monetary donations for us to purchase such items.  If you aren't local and would like to donate something, please email me at ashley.s.pryor@gmail.com and I will get you details on where to send the items.  

I know many of you reading this have already done a lot for our family and we are forever grateful for that, but we want Rowan's life to be remembered and we are excited to be able to be helping other families in his memory.  

As always, thank you for your generosity and support of our family.  

A Million Thank You's

Today marks 6 weeks since our sweet boy left us.  It's hard to believe that it has already been 6 weeks because that day's events are still so fresh in our minds.  Since being admitted to the hospital on April 22, John and I have been overwhelmed by the amount of support from the people in our lives.  I started a list of people that we would need to write thank you cards for, but that list got quickly put to the side and the amount of people that needed added to it was growing exponentially. And let's be honest, I've never been good at writing thank you notes.  So, please let this post and the thank you's that are about to follow serve as our thank you cards.  I'm not sure if everyone that we have to thank will even read this, but I know many will.  Words can really not express how thankful we are for everything that has been done for us in the last 12 weeks.

First of all, THANK YOU to our families.  You sat in hospital waiting rooms and on uncomfortable hospital benches.  You drove hundreds of miles to come visit us even if it was only for a few minutes.  You took care of our dogs, our house and went shopping for us when we couldn't/didn't want to leave the hospital.  You've been by our sides throughout this whole journey and you continue to be here for us as we try to navigate finding our new normal.  We couldn't have done this without you.

THANK YOU to Dr. Goodpasture for your quick action in getting me to Topeka when you noticed there was a major problem.  Without you, I don't even want to think about how things would have turned out.

THANK YOU to the EMTs who got me to Topeka quickly and safely.  It was my first ambulance ride and you made it as enjoyable as possible given the circumstances.

THANK YOU to all of the nurses who took care of me during my stay at Stormont-Vail.  You were all wonderful and did such a good job of staying positive and hopeful.

THANK YOU to Dr. Trobough and Dr. Dickson for taking care of me through two surgeries and recoveries.

Some of the most important THANK YOUs go to the staff at the Stormont-Vail NICU:

• THANK YOU to Holly, Terri and Roxie who greeted us with smiles every time we entered the NICU.  You put up with John's humor and wit and made us and all of our visitors feel welcome.
• THANK YOU to Janet, our nurse practitioner.  You were absolutely amazing.  Words cannot express how thankful we are for the care you provided for Rowan.  You explained things in ways that we could understand and you repeated things so that I could get everything written in my notebook.  You were encouraging when we needed it and you also provided realistic expectations when we were seeing things through rose-colored lenses.  You will always hold a special place in our hearts.  
• THANK YOU to all of Rowan's nurses: Carolyn, Monica, Suzy, Lucinda, Michelle, Mary Jo, Ashley, Caleb, Ashley B., Kim, Erin, Jamie, Brandy, Melissa, Alyssa, Bambi, Sonya, and Belinda.  You are all simply the best.  Not once did we ever worry about the care that you were giving our sweet boy.  You were positive and encouraging.  You took care of Rowan, but you also did a great job of taking care of John and I.  In the three weeks that we spent with you, you became family.  We will never be able to thank you enough for what you did for Rowan.
• THANK YOU to all of the other staff members that took care of Rowan in one way or another: Gail, Karen, Audrey, Elizabeth, all of the respiratory therapists and Rachel.  You were all a piece to the puzzle that helped Rowan survive as long as he did.
• Finally, THANK YOU to the neonatologists who took care of Rowan: Dr. Sidlinger, Dr. Morgan, Dr. Doyle, and Dr. Navarro.  Without you guys, we would not have had the 36 days that we had with Rowan.  Your knowledge of everything that goes right and everything that goes wrong in these tiny miracles is amazing.  Thank you.

THANK YOU to the doctors, nurses, and respiratory therapists at Children's Mercy.  I don't feel like we got to know you as well as we did the staff at Stormont, but thank you for everything that you did for Rowan.  You saw took care of him on some of his best days and also some of his worst.  You listened to our opinions and took the very best care of our baby.  Thank you for taking care of him all the way until the end.

THANK YOU to all of our friends.  You came to visit us and made us laugh when we needed it the most.  You got us out of the hospital for much needed breaks.  Your text messages, emails, and messages through social media always came at the most needed times.  We are so lucky to have you all in our life. 

THANK YOU to our church family.  We are so blessed to have found all of you.  Losing Hope led us to Wamego First United Methodist Church and we really feel like we have the best church family there is.  Thank you for the cards, prayers and support.  

THANK YOU to all of our co-workers.  You all stepped up in tremendous ways to keep my classroom and John's job site running well.  You took the stress of our jobs out of the picture so that we could focus on Rowan.  Thank you for being wonderful co-workers and even better friends.

THANK YOU to anyone who donated to Rowan's medical fund and/or memorial fund.  Asking for help does not come easily for John or I and we were blown away by your generosity.  

THANK YOU for all of the cards and gifts that were sent to us.  I tried to keep track of each card that was sent to that I could thank you all individually, but we got hundreds of cards and it was so overwhelming in the most wonderful way.  We have kept each card and they will go into the tote with all of Rowan's things.  

THANK YOU to anyone who brought us a meal.  I didn't realize how helpful all of those would end up being.  Each meal was delicious and very much appreciated.

THANK YOU to the families that were kind enough to say hi to us in the hallways of the NICU.  You have since become close friends and we love hearing about your sweet babies and all of their progress.  We can't wait until you get to bring them home and we can come snuggle with them. :)

THANK YOU to everyone who shared Rowan's story.  This blog helped me (and continues to help me) in ways that I never could have imagined.  Something about knowing that Rowan's story was touching people from all over the country always put a smile on my face.  

THANK YOU to all of the mamas who have also experienced loss for sharing your stories with me.  I hate that we all have this thing in common, but it is so comforting to know that we aren't alone.  I've never even met many of you, but you are in my thoughts frequently.  

THANK YOU to anyone who ever said a prayer or sent a positive thought for our family.  I have no doubt in my mind that Rowan would not have done as well as he did for as long as he did without you.  

And finally, THANK YOU to my sweet baby boy, Rowan.  You taught us how to love unconditionally.  Hope made us parents, but you made us a mommy and a daddy.  You taught us to be hopeful and how to never give up.  You put things into perspective and you touched so many lives in your short time here on earth.  I will forever be thankful for every minute that I got to spend with you. 

God has blessed us tremendously by putting so many wonderful people in our lives.  Thank you all from the bottom of our hearts.  

Rowan's Memorial Service

John and I would like to thank everyone who came to celebrate Rowan today.  It just shows how much he was loved.  We know that there are people who were not able to attend for one reason or another, so we have decided to post a recording of his service on here.

This is the slideshow that we put together.  The song that was playing is called Lux Aurumque composed by Eric Whitacre.  John performed this piece with the KMEA Intercollegiate Band in 2005.  This was a live recording of that performance.  

It was a beautiful service for a beautiful little boy.   

Thank you all for reading our story. Writing all of these posts has been a great release for me and I plan to continue posting every so often. 

The End of the Ride

I don't even know where to begin with writing this post.  I never thought I would have to write what is about to follow.

Rowan passed away in my arms Wednesday evening at 6:34 after spending the day fighting for his life.  The day is a bit of a blur now, but I will try and do my best to explain the day's events because I think it will help me to get it all written down.

Wednesday morning, John and I got up and around and after a quick breakfast run, headed to the hospital.  As we pulled into the parking garage we got a call from Rowan's nurse practitioner, Adriane.  We knew that something was up at that point because they really only call if there is something bad to tell us.  Adriane explained that Rowan had had a really rough night.  His O2 saturation had dropped multiple times into the 50s and he was really struggling to oxygenate his blood.  Overnight they had to increase his oxygen levels to 100%.  The doctors ran a bunch of blood tests because they suspected he had another infection.  His urine output had dropped and he also had a lot of edema (swelling).  The tests that they were able to get quick results from showed that his CRP was back up to a 4 and his white blood count was incredibly low.  He also had a lot of immature cells which Adriane explained as sending babies into a war.  We told Adriane that we were in the parking garage and would be right up.

When we got up to Rowan's side we immediately noticed that he looked sick.  He was very puffy and swollen and pale.  Rowan had previously fought off two infections, but through those he never really looked like he was sick on the outside.  Adriane continued to explain and go over his night and said that the doctors would be rounding on him first.  In the mean time, Rowan got another dose of morphine; he had had three overnight because he got so agitated when the nurses would even just open the sides of his isolette.  His sats would drop and he would take a while to recover, so they needed to keep him calm.

The doctors came for rounds and Dr. Sharma explained that they thought that Rowan possibly had an abscess in his abdomen.  When we first got to Children's Mercy, they had noticed a hard nodule in his lower right abdomen, but tests hadn't really shown anything and they thought at the time that it was just muscular.  Now, they were thinking differently.  So they drew some blood to run some blood cultures and see if they could find the source of infection.  They also ordered another echocardiogram to check his PDA valve since his oxygen needs were so high, an xray to check his lungs, and an ultrasound to check the bump in his belly.  They decided to start him on two general antibiotics since it was clear that he did have another infection.  Rowan's urine output had also all but stopped and he had really low blood pressure which they kind of attributed to him retaining so much fluid and having poor oxygenation.  They gave him another dose of diuretic in hopes that it would help flush some fluid out of him.  They also started him on a morphine drip because they knew he wouldn't handle all of the scans that they needed to do very well.  Both the doctors and John and I thought that this was just going to be another infection that we would treat with antibiotics and we would be good to go.   

The morning continued and Rowan's oxygen saturation continued to run in the 70s even though he was on 100% oxygen.  This was very concerning because even though he would occasionally have dips into the 70s, he always recovered and got back into the 90s where they wanted him to be.  John and I ate a quick lunch from the cafeteria and stayed by Rowan's side because our poor boy was just not acting like himself and we didn't want to be too far away. 

At around 2:00, they came to do Rowan's echo and then they followed that with the other scans.  The doctors were beginning to get results back from some of the other blood tests.  The test for viruses was negative, but the sample from his trachea that they were culturing was already testing positive for some bacteria.  The nurse said she suspected that he possibly had pneumonia. We knew he already had some fluid in his lungs (it was showing up on x-ray) but she also suspected that there was some bacteria in there and said that it can happen when babies have to be intubated for long periods of time.   They wouldn't know for sure what type of infection he had until the cultures had grown for 48 hours. 

At about 3:00, things began going downhill very quickly.  After a morning and early afternoon with fairly consistent stats, Rowan began having o2 desaturations in the 50s pretty frequently.  His color was really bad at this point and he turned blue several times because he wasn't getting enough oxygen in his blood.  Dr. Sharma (the neonatalogist), Adriane, the resident, the infectious disease doctors, the pharmacist and the respiratory therapist came to Rowan's bedside to try and figure out what they could do for him.  They began trying new antibiotics and other fluids to help his pressures.  They also started getting his results back from his scans.  His abdominal ultrasound, Echo, and head ultrasound all looked clear, but his x-ray showed that his lungs were collapsing. 

The next 2 hours were a complete blur.  There were so many people there trying to stabilize and help Rowan. At about 4:30 they decided to give Rowan a paralytic to keep him from moving because even the slightest movement would cause his heart rate to plummet and his o2 sats to drop even further.  At one point they even had to bring the crash cart over because his heart rate dropped to below 80.  After getting the paralytic, Rowan did stabilize a little bit, but he was still not doing well.  During this time, I stood by Rowan and looked in on him.  I couldn't hold his hand because it would make him desat, but I watched him through his isolette and even though he was heavily medicated, he opened one of his eyes and looked right at me.  I knew at that point we were losing him because his look told me he was tired and just couldn't fight anymore. 

They got another blood gas at 5:00 and when the nurse went to get the results, she actually thought the lab had messed up and given her the results for the wrong baby.  They results were not very good, but they thought that it was either a mix up in the lab or that it was due to him having poor blood circulation to his foot where they drew the blood.  His blood gas at 2:00 hadn't been great, but it wasn't too concerning, so they thought it was an inaccurate test. So they did another blood gas from his arterial line.  A doctor (not Dr. Sharma, she had to leave for a meeting) brought it back and unfortunately the results were in his words "very bad."  In a matter of 3 hours Rowan's condition had gone from not great to very critical.  The blood gas showed that Rowan had very high acidity levels in his blood. Adriane explained that because he was having a hard time oxygenating his blood, his muscles and organs were trying to work without it.  Just like when you workout, the muscles and organs were producing lactic acid as they were trying to work.  This lactic acid was basically causing Rowan's organs to begin shutting down.  They explained that they could give him some medicine to try and bring the acidity levels down, but the doctor had never seen levels so high in his 15 years as a neonatalogist.  They told us that we should begin calling in our families because the medicines that they were giving him needed about 24 hours to begin working and they didn't think he had that much time. 

At about 5:45, Rowan's heart rate dropped into the 50s.  They began talking to us about resuscitation and John and I heard the words that no parent ever wants to hear; that our son was dying.  Rowan's heart rate did get back up into the 70s, but they told us if it dropped below 60 again that they could do chest compressions to get it back up but with him being so little, the pressure would probably do more harm than good.  They also gave us the option to switch him back to the conventional ventilator and just let us hold him.  They assured us that he was in no pain and John and I decided that we just wanted to hold our little boy so that he could pass in our arms.  They got Rowan switched to the other ventilator and then I was allowed to pick Rowan up and we walked with machines in tow to a private room.  They took him off of his heart monitor, but kept the ventilator and IVs going.  We were given time to be with our boy.  We both got to hold him and at 6:34 they came to listen to his heart and didn't hear anything.  Just a couple of minutes before that, John had given him back to me to hold and a very relaxed and peaceful look spread across Rowan's face and I knew that he was gone.  He had passed away peacefully in my arms without any pain.

Our families and our pastor came to the hospital and everyone got to hold him and say goodbye.  At around 10:00, I gave Rowan a bath and we read The Little Engine That Could one last time.  At about 10:45, we said goodbye to our sweet boy, handed him to a nurse and left the hospital without our baby boy.

Nobody knows for sure what happened and Dr. Sharma, who was our main doctor the last two weeks, came back to the hospital from her meeting and was visibly upset that he didn't make it.  Everything happened so quickly and even though the medical staff did all they could, it just wasn't enough.  We gave the hospital permission to do a chest and abdominal autopsy so that we can hopefully figure out what happened.  We know nothing will bring Rowan back, but if we can maybe help another baby in the future that might be in the same situation then Rowan's death will have had a purpose. 

John and I never thought we'd have to bury a child, let alone two in the last two years, but we take comfort in knowing that all Rowan ever knew was love.  He was loved by so many people, many of whom never even met him.  He is so deeply missed by John and I.  We spent 36 days by his side and though that is not long enough, we are thankful that we had that long with him.  Rowan fought so hard.  He beat two infections, but this third one was just too much for him.  He tried so hard to fight it, but he was just too little and too tired to beat it.  He is now running around in heaven with his big sister, Hope, and we take comfort in knowing that they will both be there waiting for us when our time on Earth is over. 

Every time we left Rowan's side be it for lunch, dinner, or to leave for the night, John would give Rowan a little lecture.  He always told Rowan to "Listen to your doctor, listen to your nurse and stay in bed."  Well, Rowan listened to his doctor, listened to his nurse and he stayed in bed until the very end. 

Rowan, you are no longer held down by tubes or wires, so fly high my sweet boy.  We'll see you again someday.

** Funeral services for Rowan will be held on Monday, June 6 at 10:30 a.m. at the Wamego First United Methodist Church.  A lunch will follow and then Rowan will be laid to rest next to his sister at 1:30 p.m. at the Leonardville United Methodist Cemetery just north of Riley.  All who loved Rowan are welcome to attend. **

Weekend Update

I don't have a whole lot to update about today.  This weekend has been pretty low key and Rowan is doing about the same as he was on Friday.  His oxygen levels have remained kind of high.  John and I think this is in part because he just doesn't like the oscillator because he can't breath on his own like he does on the conventional ventilator.  Rowan is also very sensitive to sound and noises and we have had some very noisey nurses tending to our roommate the last couple of days.  I guess John and I aren't the only ones who got spoiled with the private NICU rooms in Topeka.  Rowan's carbon dioxide levels have gotten a lot lower and are now in the acceptable range for him.  The oscillator really helps him get rid of the co2 and his blood gases have looked good.

Today, Rowan's abdominal and chest X-rays looked really good.  Dr. Sharma said that his lungs were expanding well (something he's had trouble with) and his bowel looked good.  Because of this, they were able to start feeding Rowan again.  He is getting 1mL every 3 hours.  He seems to be tolerating it pretty well, but the real test will be if he can continue to poop like he has been the last week now that he has food in his stomach.

They did their weekly height and head measurements last night and he is currently 13 inches long (up from 12.5 inches at birth) and his head is 10 inches in diameter (up from 8.5 at birth). Tonight his weight is 1060 grams which is 2 pounds 5 ounces. We're pretty excited to be in the more than 1 kilo club! 😊

We hope that Rowan can continue to have good expansion in his lungs and hopefully be switched back to the conventional ventilator.  We also need him to tolerate and digest his feedings well.  This has all been a huge test of John and I's patience because we can only move forward as fast as Rowan will allow.


Today on Memorial Day, we also remember all of those who gave their lives fighting for our freedom.  It is also a day to remember family and friends who have gone before us.  John and I thought about our sweet girl, Hope, a lot today.  We had hoped to be able to make it to Riley to visit her grave, but thought it was more important to stay in KC with her baby brother.  We know that she is always here with us watching over Rowan.  💗💗

Rowan at 1 Month Old

Fun facts about Rowan at one month old:

• Likes to be awake and looking around
• Prefers to sleep on his belly
• Doesn't like to stay in one position for more than 3 hours
• Hates having a wet diaper
• Likes to kick his legs and wiggle his butt around
• Has the cutest smiles
• Has really big eyes
• Has surprisingly long hair that gets lighter each day
• Has really long fingers and really big hands and feet (in comparison with the rest of his body)
• Has a double chin despite being super skinny everywhere else
• Likes to have books read to him before bed
• Weighs over 2 pounds!
• Likes to keep his mommy and daddy on our toes
• Is stubborn and ornery
• May be small but he takes up a big spot in our hearts

Things I've learned in our month of being NICU parents:

• Time hasn't gone by as slow as I thought it would (yet anyway)
• Nurses are invaluable people
• Hospital chairs aren't too awfully uncomfortable
• Being a mom rocks
• It's ok to have bad days 
• Bad days help make the good days even better
• John is amazing and I absolutely couldn't do this without him by my side
• It's important to speak up and question the doctors
• Don't let first impressions determine what you think of someone
• You can meet some pretty amazing people in the NICU and it's so important to get to know these people because they know exactly what you're going through
• Taking breaks and getting out of the hospital (even it is only for 30 minutes) is a necessity or you will lose your mind
• I've had days where I haven't felt like a "real mom" because I don't get to do the "normal" stuff like picking him up and holding him.  I've come to realize though that being a mom isn't about all of that stuff.  Being a mom is about being there for your kids no matter what and being an advocate for them.  All of the other stuff is just icing on the cake.
• The amount of love I have for this tiny human being is absolutely crazy
• It's ok and even necessary to ask for help.
• And finally, John and I have the most amazing support system in the world.  We have been blown away by the amount of people who have stepped up to help us.  Be it mowing our yard, making us meals, giving gift cards for food and gas, coming to see us and making us leave the hospital for a little bit of "normal life," sending nice messages and emails, donating money and most importantly sending positive thoughts and prayers, we appreciate it more than you will ever know!  You better believe we will be paying it forward in the future!

Here's to another month of watching our sweet boy grow! ❤️

1 Month Old!

Yesterday, Rowan turned one month old and it's been a crazy couple of days here at Children's Mercy.

Wednesday was a bit of a rough day.  We accidentally slept in Wednesday morning and when we got to the hospital at 9:30, the doctors had already rounded.  The one day that we weren't here before 9 they rounded on Rowan first... most days we have to wait around until 10:30 or 11 before they come to talk about him.  Anyway, the nurse said that there weren't any changes being made for his plan of care for the day.  Around 11:30, the nurse gave Rowan a dose of morphine because his heart rate was high and his blood pressure was a little high as well.  All they told us was that they thought maybe he was in pain from being reintubated on Tuesday.  We weren't super comfortable with the decision to give Rowan the morphine, but didn't fight it.  The rest of the day, Rowan just wasn't himself.  Long after the morphine should have worn off, he was still very lethargic and just not himself.  He didn't wiggle around like normal and when we tried to hold his hand, he didn't grip it like he normally does.  John and I were pretty concerned.  Rowan's oxygen needs also increased throughout the day and he didn't have wet diapers like he normally does.

By early afternoon, the nurse practitioner suggested that he get another dose of morphine and this time we asked them to just try to reposition him.  When Rowan is upset or uncomfortable it is pretty easy to tell because he has a very expressive face (I wonder where he gets that from...) and he had been asleep all day and clearly not in any pain.  We didn't see a need for the morphine.  Because of his oxygen needs and the fact that he was not breathing off much CO2, they decided that it would be best to put Rowan back on the high frequency ventilator (the oscillator).  This was very unexpected and really had John and I worried.  The need for the oscillator combined with how he was acting just left us with an unsettled feeling.  The doctors didn't really seem to know what was going on and the unknown was worrisome.  They ordered more labs to check for infection and to see what else was possibly going on.  We stayed pretty late on Wednesday night and around 10:30 Rowan finally started wiggling around and opening his eyes a bit more.  This made us feel a little more comfortable and we finally left for the night around 11:45.  It was a long day.

Thursday, we got up a little earlier and were at the hospital before 8.  When we got here, Rowan was requiring 100% oxygen... not the way we wanted to start the day.  He did seem to be more active and was wiggling around quite a bit.  He had also pooped overnight and had a little bit of a wet diaper. They gave him a diuretic early in the morning to help relieve some of the fluid build up... he was starting to look really puffy Tuesday night. The doctors rounded pretty early.  They weren't real pleased with Rowan's high oxygen needs; however, his CO2 levels had decreased to a normal range with the oscillator.  They ordered an echocardiogram to check for the possibility of pulmonary hypertension and to check on his PDA.  They suspected he had pulmonary hypertension because of his high oxygen needs.  Our understanding with that is that the blood pressure in the lungs is higher than that of the rest of the body, so it doesn't allow as much blood to flow through the lungs therefore it doesn't oxygenate the blood as well.  This is what they thought had caused the high oxygen rates.  The lab results from Tuesday looked good.  His CRP was 1 and his CBC looked good.  His hemoglobin was a little low, so they ordered another blood transfusion... Rowan is apparently a vampire.  :-)

Later in the afternoon, we got the results from the echo. It showed that Rowan's PDA was still slightly open (the same as it had been), but he did show signs of pulmonary hypertension.  Treatment for this is to add nitric oxide to the gases that he is getting.  The nitric oxide opens up the blood vessels in the lungs and allows more oxygen to flow through. Within an hour, Rowan's oxygen needs were already decreasing, so the nitric oxide was doing its job.  Rowan also had a better urine output and was moving in the right direction.  By evening, Rowan was acting much more like himself.  He was moving around a lot and was awake a lot more.  He would look towards John and I's voices when we talked to him and he was gripping our finger a lot better.  He was also down to 74% oxygen.  We still don't know what was going on with him on Tuesday, but we're glad he seems to be over it!  It was quite the day for his one month birthday!

This morning, he is doing pretty good.  He is down to 64% oxygen and was sleeping comfortably when we got here.  We are still waiting for rounds.  They had to do a sterile procedure on our roommate this morning, so we are still waiting to get in to see Rowan and to talk to the doctors.  We do know that they did a chest and abdomen x-ray this morning and they are planning on doing a head ultrasound today (routine).  They will hopefully resume feedings today depending on how his x-ray looked this morning.  We will also ask when they think we can get transferred back to Stormont Vail.  We're hoping that we are done with bad days for a while and that we can get a good stretch of days where we progress in the right direction!

4 weeks old!

Today Rowan is 4 weeks old! I cannot believe it's been 4 weeks since we said hello to our sweet boy for the first time.  It just doesn't seem possible. We love this little boy so much!

We've now also been at Children's Mercy for a week and overall it has been pretty uneventful... Thank goodness!  This morning, Rowan got a bigger ET tube placed.  They extubated and then reintubated with a larger tube to try and fix his air leak.  He wasn't having great blood gases and his oxygen needs were pretty high and they were attributing a lot of that to the air leak.  The hope is that now that the leak is gone, Rowan won't need as much oxygen and we can hopefully wean him off the vent sooner.  He's already doing much better!

Not a whole lot has changed since the last post.  He has had several good poopy diapers which is a great sign that things are moving in his belly like they are supposed to.  Yesterday his CRP was 1.9: a huge improvement from 25 which is where it was at when we got here.  The plan is to continue his antibiotics and bowel rest until the 27th.  At that point they will do an X-ray of his abdomen to check on his bowels and if everything looks good, they will slowly start feedings again and see how he tolerates it.  We've been able to hold Rowan several more times.  John got to hold him on Friday for the first time (cutest thing ever!) and I've been able to hold him a couple more times as well.  Each time they let us hold him for about 2 hours and it's the best 2 hours of the day.  I can't wait until the day when we can pick him up whenever we want to and not need help from the nurse and respiratory therapist to move him and his cords and tubes.  Something tells me I'm never going to put this sweet boy down once we get to that point.

We are so very thankful that surgery hasn't been necessary.  Surgery is always risky, but it would have been even more so because he is so tiny and he has been so prone to infection.  If all goes well with his feedings, we hope we will be able to head back to Topeka.  The nurses and doctors here have been great, but we are ready to get back closer to home and our support system.

Thank you again for all of your thoughts, prayers and donations to our Go Fund Me.  A million thank yous wouldn't be enough to express our gratitude. ❤️

All Smiles

We had a pretty good day yesterday. Tuesday night, Rowan weighed in at 800 grams or 1 pound 12 ounces. And tonight he weighed 810 grams.  They measure everything in grams here which is kind of nice because sometimes he will gain some grams but it won't be a full ounce.  There weren't any major changes yesterday.  They continued to wean him off the vent and confirmed that the plan of action to treat what they are pretty sure is medical NEC.  They will treat Rowan with antibiotics for at least 10 days and also continue to rest his bowel (no food, just IV fluids) for at least 10 days.  Hopefully this will take care of everything and we will be on our way back to Topeka.  The surgeons come and check on Rowan each day and so far they don't see anything that would lead them to doing surgery.  They've been able to suck lots of yucky gunk out of his belly through his GI tube and his belly was a lot softer yesterday.

Rowan was awake a lot yesterday and seemed to be feeling much better.  He's a little bit pale, but they had to draw a lot of blood when he first got here, so hopefully his body will regenerate the blood that he lost soon.  There hasn't been any talk of a blood transfusion.

Rowan looks more and more like his daddy each day.  John was a preemie too and the two of them look pretty similar.  I think that maybe Rowan has my eyes and nose, but that might just be wishful thinking. :)

The big development yesterday was that I saw Rowan smile for the first time.  I didn't catch it on camera, but I saw some good smiles!  Every time I had John come look, Rowan stopped smiling, so John thinks I'm just crazy.  :) Goal for today: get a picture of Rowan's smile.  It's pretty much the cutest thing ever and I can't wait to show you!

We are currently waiting for the doctors to make their rounds today.  It is a very interesting process.  In Topeka, the doctors did their rounds in a conference room and then the nurse practitioner came and told us the plan for the day.  Here, they all come to Rowan's bedside and discuss his progress and their plan.  Since this is a teaching hospital Rowan's team includes the neonatologist (Dr. Oshodi), a Neo Fellow, sometimes a resident, a nurse practitioner, a pharmacist, a nutritionist and his nurse for the day.  It is all very overwhelming and a little confusing, but they do a good job of explaining their plan when they are done with their discussion.  I sometimes feel like I am on an episode of Grey's Anatomy... I'm just waiting for Dr. Karev to walk through the door. 😊😉

On another note, John and I have started a Go Fund Me page for Rowan's medical expenses.  This is very out of our comfort zone as we really prefer to just work hard and do the best we can to live within our means.  We didn't exactly plan for a 100+ day NICU stay (who does??) and we know that the bills are going to start rolling in.  If you find it in your heart to make a donation, we would really appreciate it.  You can find Rowan's Go Fund Me page here. Words will never be able to express how thankful we are for all of the help and support that we have been given.  It is incredibly humbling. Thank you. ❤️

Ups and Downs and a New Hospital

It has been an insane last couple of days.  Sorry for the lack of updates on here, but we had gotten to the point over the weekend where not much had changed and I thought I could just lump the weekend together into one post on Monday.  Mr. Rowan had different plans and thought that he needed to make things a little more exciting on Monday and Tuesday.

As I said, the weekend was fairly uneventful.  Friday was a pretty smooth sailing day and we coasted through with good numbers and lab results.  Saturday, Dr. Navarro decided that Rowan was doing well enough to extubate him and try him on CPAP.  John and I were really surprised that they were doing this and it seemed like we were taking a huge jump forward.  They switched him to CPAP late morning and he did fairly well.  It became pretty obvious as the day went on though that he was not a fan of having to breath on his own and he became tired very quickly.  They decided they would let him stay on the CPAP through the night and see how he would do.  They also tested his CRP level and did a CBC.  His white cell count was a little elevated so they said it might be a sign that he might still be fighting a bit of an infection and his CRP was at 0.5.  John and I went home Saturday night and went to church Sunday morning.  When we got back to Topeka, they had reintubated and Rowan was back on the vent.  We totally expected this to happen, so this was not a surprise.  We were ok with taking a couple steps back since we had taken such a huge leap forward.  We knew that Rowan had gotten pretty tired from trying to breathe on his own on the CPAP because he let the vent breathe completely for him for most of the day.  He started to catch back up in the evening and was doing really well.

Monday, we ran into another hurdle.  When Janet, the nurse practitioner, came in to give me the plan for the day, I could immediately tell that she was concerned about something.  They had done more blood work and his white cell count had increased again and his CRP was now at 4.8. That was definitely out of the normal range and showed that there was some kind of infection happening somewhere within Rowan's body.  They were unsure at that point what was going on and they ordered more tests to find out.  One of these tests included doing an X-ray of his chest and abdomen.  They were still concerned that he hadn't really pooped in several days so they wanted to check and make sure that everything looked ok with his digestive system.  On the bright side, Rowan's lungs were starting to look better which showed that the steroids were doing their job.

After Janet left, I went to the hallway to call John and give him an update since he was in Wamego at work.  I had held it together up until that point, but couldn't any longer.  I was majorly concerned about Rowan's blood infection possibly being back or the possibility of a whole different infection.  John, being the awesome guy that he is, left work and headed back to Topeka without me even asking.  He knew that even though Rowan was doing completely fine, I would need his support.

As the day went on, they drew more labs and ran more tests.  I was able to hold Rowan again from about 2:00-3:00.  John still hasn't gotten to hold him, but he knew that I needed some cuddle time so he gave me his turn.  Around 4:00, they did another X-ray and that's when things really started to fall apart.  Rowan's team of doctors determined that his X-ray showed signs of infection and either a possible bowel obstruction or something called necrotizing enterocolitis or NEC (the nurse told us not to Google it... But you can read about it here.  It is the same information that the doctor gave us.) Basically NEC is when the bowel gets infected and either causes a perforation or causes bowel tissue to die.  This was very upsetting and concerning to hear.  I'm not going to lie, I was a complete mess. The doctor explained that the plan going forward was to add another antibiotic to Rowan's list of medications and stop feedings to give the bowel rest.  Rowan's stomach had also become a bit distended or swollen and it also appeared a little discolored.  By 5:00, Rowan's CRP had risen to 6.8. Since he once again had an infection, they stopped giving him the steroids for his lungs as they can weaken the immune system.  The rest of the evening was pretty rough for me.  At this point, Rowan was in obvious discomfort at times, especially anytime his abdomen got moved or touched.  There is nothing worse than standing beside your baby's bed and knowing that they are in pain and there is nothing you can do about it.  I wanted nothing more than to pick my sweet baby boy up and comfort him.  It was tough.  We finally left the hospital Monday night around 11:00.

Tuesday morning brought even more changes.  We arrived at the hospital around 8:30 after getting some much needed sleep.  We were pretty optimistic, but the nurse was very quiet when we got to his room.  Quiet nurses are never a good sign.  After the medical teams finished their rounds, Janet came to speak to us.  She told us that Rowan's most recent x-ray was leading them to believe that he had a bowel obstruction.  The only way to know for sure was to get a surgical consult.  No big deal, right?  Well, there aren't any surgeons that would perform this type of surgery at Stormont Vail, so they needed to transport Rowan to Children's Mercy (CMH) in Kansas City.  All signs were pointing at Rowan needing surgery; along with his x-ray, his CRP was almost 15, his white cell count had risen and his platelets had dropped.  We were told that the doctor needed to get in contact with CMH to get things worked out and then they would either send a helicopter or an ambulance to get Rowan.  John and I spent the next couple of hours getting things ready to head to KC.  We packed up Rowan's Room at SV and got all of our things from the Ronald McDonald House.  It was very hard to be leaving what had become home for the last three weeks.  We were incredibly sad to leave all of the nurses, practitioners and doctors at Stormont Vail.  They have really become family while we have been there.  When you trust someone with the life of your itty bitty baby they find a way into your heart very quickly.  However, we were assured that once they get things figured out with his bowel and everything looks good, we should be able to go back to Stormont for Rowan to continue growing and getting stronger.

At about 1:40, Rowan got loaded onto the ambulance (couldn't send a chopper because of the weather) and he headed to KC.  John and I grabbed a quick bite to eat and filled up the car with gas and then we headed that way as well.  Things are very different at CMH.  We had our own private room at Stormont which was amazing.  At CMH, it is an open ward.  We were placed in a semi-private room; we share it with one other baby.  It definitely feels like a more clinical environment.  When we arrived, the nurses were doing their assessment of Rowan.  He didn't tolerate transport very well and they had to place him on the oscillating ventilator.  They also had to give him a little bit of morphine for discomfort on the ride to KC.  Everyone got settled and the waiting game began.

Finally, at about 6:30ish the neonatologist came to talk to us.  He said that in looking at all of the information, he didn't see Rowan as a surgical case at the moment.  He said their plan was to basically do the same things they were planning in Topeka: antibiotics and bowel rest.  He stated that the importance of getting Rowan to CMH was because bowel issues can progress quickly and this way he is here in case the need for surgery arises.  The nurses continued to draw blood and run their diagnostic testing and we finally left to head to the Ronald McDonald House that is just down the street.  It was a. long. day!

Today has been a much less stressful day.  When the doctors rounded this morning they said that they are still suspecting that Rowan has NEC, but they want to do a few more tests to make sure.  They ordered an ultrasound of Rowan's bowels to check for fluid around them and they will continue to do blood tests to check for infection.  As of right now, we do not know the results of the ultrasound.  They will also be doing an echocardiogram in the next couple of days to check in the progress of Rowan's PDA.  Rowan's blood gases have looked great today and they were able to switch him back to the conventional ventilator.  He is still in some discomfort and does not like to be touched at all right now, but he's never really been a fan of being messed with.  :-)  His belly looks much less distended today and they have been able to suck quite a bit of gunk out of his stomach through a large NG tube.

We will probably be here for at least a couple of weeks.  John and I are getting more used to our surroundings.  They have a lot of great resources here for us, but we still miss the smallness of Stormont.  I know that they will provide great care for Rowan while we are here and we are once again in the best place for his needs at this time.  The doctors round each day sometime between 9 and noon, so I will try and do updates on here after that.

We may have had to switch amusement parks for our roller coaster ride, but we are confident and faithful that we will be able to get through this just like we have the last three weeks.

(Sorry for the long post... a lot had happened since the last time I posted!)

Best. Day. Ever! So far anyway....

So this happened tonight...

For 4 years and 8 months we've been waiting to hold a baby of our own... Tonight it finally happened and it was the best thing ever!!

Today, John and I spent the day running errands in Manhattan.  We got up early and went to check on Rowan.  His nurse said that he'd had a good night and was doing about the same as he was yesterday. We took that as a good sign and headed to Manhattan.  We got back to Topeka at about 4 and the nurses had just moved Rowan back to his tummy (his favorite position).  We hung out with him for a while and then at around 5:45, Dr. Morgan popped into our room to see if we needed anything or had any questions.  It had been a calm day and he was doing well, so we thanked her for asking and said we were good for right now.  As she was leaving the room she asked if I had held Rowan yet.  I said no and she replied with "Well, let's change that."  My heart soared and I got really giddy.  They had to do a blood gas at 6:00, so they told us to go grab some dinner and when we came back they would be ready for me to hold him.... I've never eaten dinner so fast in my life! 😊

When we returned to the room, we had to check Rowan's temperature to make sure that he was warm enough to be taken out of his isollete.  He was already showing good oxygen levels and other vitals, we just had to make sure he was warm enough... The little stinker was about half a degree too chilly.  So the nurses, not ready to give up for the night, turned up the heat on his bed and gave him a little while longer to reach a better temp.  After another 20 minutes, he was warm enough and I was given the green light to get to cuddle with our sweet boy.

We got the chair in position next to the vent and all the monitors and I was given a "Kangaroo Wrap" to wear so that we could do skin-to-skin.  It took four people to take Rowan out of his isollete and get all of his cords and wires where they needed to be, but at 7:25 this evening, I got to hold him for the first time.  We spent the next hour all cuddled up and Rowan did remarkably well.  He maintained his temperature (with the help of my body heat) and they were able to decrease his oxygen levels as I was holding him.  The nurses mentioned several times that he was incredibly comfy and tolerating it very well.  In fact, we were a little concerned that he was going to be kind of ticked off when it was time to go back in his bed.  It was the quickest hour of my life, but I will never forget it!!

At about 8:30, they moved Rowan back to his bed and weighed him for the night.  He lost an ounce since yesterday, putting him at 1 pound 12 ounces, but he wasn't retaining as much fluid tonight. Rowan got settled in and actually tolerated the move back to bed really well.  John and I each read him a bedtime story and then it was time for us to go back to the Ronald McDonald House for the night.  If Rowan has another good day tomorrow, John will get to hold him tomorrow night.

Rowan continues to make small gains each day.  I've said it before, but I'll say it again, we could not be more thankful for all of the thoughts, cards, gift cards, snacks, and other things that have been sent our way.  We are especially thankful for all of the prayers being sent our way.  I know they are making a difference! God Bless you all!

Life in the NICU

This week, we have been settling into some new routines and schedules.  John very reluctantly went back to work on Monday, so it has just been Rowan and I here at the hospital.  We're still staying at the Ronald McDonald House and we are so thankful to have a place to sleep that is only 3 blocks from the hospital.  It is comforting to know that we can get to the hospital in a matter of minutes should we need to (thankfully we haven't had that happen and we hope it stays that way).  John and I get up pretty early, get around and head to the hospital before John has to go back to Wamego for work.  Since I haven't been cleared to drive yet, he has been my chauffeur.  After visiting Rowan for a little while and making sure that Rowan and I are doing ok, John heads to work.  He works all day and then comes back to the hospital to hang out with Rowan for a while.  Bless that man for working so hard for our family when I know he would rather be at the hospital with us!  I pretty much spend all day in Rowan's room with the exception of going to the cafeteria for lunch.  Thank goodness for Wifi and Netflix!  We're 16 days in to our stay here and if all goes as planned, we only have about 100 left.  It's definitely been an adjustment, but time is going by relatively fast.  We hope to gradually get home more and more as Rowan gets bigger and improves.  Right now, we have been coming home on Saturday for the night and then we go to church Sunday morning before coming back to Topeka.

Rowan has been doing pretty good this week.  On Sunday and Monday, he was still requiring quite a bit of oxygen (up to almost 100% at times).  They attributed this partially to the large leak around his ventilator tube and partially to the inflammation in his lungs.  Because of this, they started him on a steroid on Tuesday.  By Tuesday evening, we were already seeing huge improvements in his breathing and his oxygen levels were down in the 50s!  This morning, his labs looked really good and they decided to make a pretty drastic change in his vent settings... Rowan didn't like this very much (he had gotten kind of lazy while the vent settings were high), so he's been requiring a bit more oxygen today.  He is still at a much lower level than he was at the beginning of the week. Otherwise, not much has changed.  The infection in staying away and he will finish up his antibiotics next week.
He continues to grow and officially weighs in at 1 pound 13 ounces.  He now weighs more than he did when he was born; in fact, he apparently only weighed 1 pound 9.2 ounces when he was born.  Somehow, they have it written on his little announcement/nursery card that he was 1 pound 11 ounces but in the computer and on all of the official records he was only 1 pound 9.2 ounces.  Little guy was a little bit smaller than we thought, but he is gradually gaining weight and getting bigger!  We have noticed the last couple of days that his face and neck are a little swollen.  Because of his air leak around his ventilator tube, they have been leaving him in one position for longer periods of time.  This is causing some fluid retention, but the nurses and doctors don't seem too concerned about it.  Hopefully the steroids will continue to do their job and we'll be able to just get off the vent and get rid of the tube altogether.  :-)

We are so thankful and amazed at how well he is doing.  There are SO many things that we could be dealing with right now and we have only had to address and worry about a small fraction of those.  We still have a long road ahead of us, but Rowan is doing so, so good right now considering he was born before 24 weeks.  Prayers work!!

Wide awake on Monday morning!

I love these little eyes!

"Hi, mom!  I'm two weeks old today!"

Rowan turned two weeks old on Tuesday.

Caught the cutest little yawn in this picture!

Mother's Day 2016

So my husband planned a pretty awesome little party for me for Mother's Day.  Our families came to visit and we enjoyed cupcakes and some gifts in the waiting room.  It was great to see everyone and a perfect way to celebrate Mother's Day.  John is not good at not revealing surprises, but he kept this one a secret.  I knew he had something up his sleeve, but I wasn't sure what it was.  He has been the best daddy to Rowan and so supportive of me during the past two weeks.  I couldn't ask for a better husband or a better daddy for Rowan!

Our sweet night nurse helped Rowan make me a card for Mother's Day.  We love Michelle!

Great Grandpa VanSickle (a.k.a Papa Wayne) came to visit Rowan for the first time on Sunday.

Great Grandma Mel visited and brought a book that has been read to my dad, my aunt and uncle, my sisters and I, my cousins and now Rowan.  Gotta love Dr. Seuss.

Rowan has the tiniest and cutest little pacifier that he sometimes like to suck on.

Rowan loves to lay on his tummy!

Enjoying the rare opportunity to stretch out when he isn't all snuggled up.

Daddy changing Rowan's diaper.  (Sorry the pics are all do dark... they keep the lights dim and we don't want to use the flash because it can hurt Rowan's eyes.)

This was part of my Mother's Day gift from John and Rowan.  A topaz stone for Hope and a diamond for Rowan.  I also got a sweet card and letter from Rowan (with some help from his daddy), and several other gifts from John and our families.

PICC Lines and the Regular Vent

Today we hit some major milestones in Rowan's progress.  Rowan's blood cultures were still negative this morning, so we were given the all clear to have PICC lines inserted and the umbilical line removed! Rowan has made huge progress in getting rid of his blood infection.  They will continue his antibiotics for at least 14 more days to make sure that it is gone for good.

This morning, Rowan was still requiring 90% or more oxygen and he kind of had the doctors and nurses stumped. His blood gases were looking great and his X-rays were clear so they weren't real sure why his oxygen needs were so high.  They decided that they would switch him back to the regular vent and see if that would make a difference.  So around lunchtime, they switched him back to the regular ventilator and he's been around 60-70% since then. 😊  They also discovered that he has a small leak around his ventilator tube. This is because he has grown enough that there is space in his airway around the tube and some air is escaping,  Ultimately the solution would be to put in a bigger tube, but they really don't like to extubate little guys like Rowan and then reintubate them.  So for now, he just sounds like a little kitten with the air that is escaping (I think he sounds like Wheezy, the penguin from Toy Story). Hopefully soon he will be big enough and be doing well enough that they can take him off the vent and put him on CPAP.

After lunch, the nurse practitioner was able to place two PICC lines, one in each forearm and they were able to remove his umbilical line.  With the removal of the umbilical line, the rest of his umbilical cord came off.  Now he has the cutest, tiniest little belly button. 😊 The PICC lines will be able to stay in for a long period of time and give the doctors and nurses much better options to give meds and fluids and also to draw blood and labs.

They redid some of Rowan's measurements tonight.  His head is 1/4" bigger, he is 1/2 cm longer and his belly has shrunk just a little bit.  I don't know if it's because we spend so much time here looking at him, but John and I think that his face is starting to fill out and his ribs are not as pronounced as they used to be.  He also gained another ounce today so he is up to 1 pound 10 ounces.

We are so thankful that Rowan has had a good day.  After a couple of not so great days, the good days like this are going to seem even more special.  Every baby step forward is one step closer to getting to hold our sweet boy and eventually getting to take him home.

Bright Eyes

Rowan finally opened his eyes today!

This morning we were greeted with some pretty cute little eyes! After a few days of trying hard to get his eyes open, Rowan finally succeeded! We love his precious little face!

Today was a much better day.  Rowan is still on the oscillator and his O2 levels are still kind of all over the place, but we're working on it and adjusting the settings as needed.  As the nurse practitioner said today, we need to let Rowan tell us what he needs and right now he is telling us that he needs a little bit more oxygen.

Lab wise, Rowan's CBC still looks good.  His white count has continued to fall closer to the normal range and his other numbers looked good too.  They did another blood transfusion this morning because his blood pressure was a little low and so was his hemoglobin.  We anticipate several more transfusions in his future because they have been having to draw so much blood to check his CO2 and O2 levels.  Speaking of those, Rowan's blood gases have looked much better today.  This is also a step in the right direction because it means that his body is doing a better job of getting rid of the CO2 and effectively using the oxygen.

The biggest news today was that his blood culture from May 4 is still showing negative after 48 hours and so is his blood culture from yesterday (after 24 hours).  This is such a good thing as it means that if these are still negative tomorrow, the doctors will be ready to insert a PICC line and we'll be able to remove the umbilical line.

This afternoon, John and I had a care conference with the nurse practitioner and Dr. Morgan (if you watch the news on WIBW, she is the one that they interviewed for their triplet story last night...she's pretty awesome 😊).  We basically sat down and went over how Rowan is doing from head to toe.  The nurses and doctors have done such a great job of informing us about everything that is going on with Rowan that most of the information was stuff that we had already heard.  There is a bit of concern regarding some inflammation in his lungs.  This is very common with babies that are as young as Rowan because they have to spend so much time on the ventilator.  Basically, because the lungs are exposed to so much oxygen, the just get inflamed.  This could correct itself or it can also be treated with a steroid (similar to the ones they gave me when I was admitted to the hospital two weeks ago... how has it already been two weeks????).  Dr. Morgan said that they don't like to give the steroid before 14 days old because it can have some negative side effects and he also needs to have negative blood cultures because the steroids can weaken the immune system.  This is all just a possibility, but they wanted to let us know about it.  We also talked about several of the scans and tests that they would be doing as Rowan gets older.  It was a very informative meeting.  We are so thankful for all of the things that the doctors and nurses have done for Rowan.  We have had a great experience with all of them!

The just weighed Rowan and he is up to 1 pound 9 ounces!  They were able to resume feedings today, so hopefully he will continue to pack on the pounds.

I don't want to jinx it, but it seems that we may be finally making progress on the blood infection and we continue to be hopeful that each day will bring improvements in Rowan's health.  Today was a good day!