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!

New Equipment and Lots of Tests

Today was a rough day for Rowan, mommy and daddy.

Rowan got some new equipment this morning.  His blood/gas levels were still kind of icky last night.  He is having trouble breathing off the CO2 and they kept suctioning a lot of gunk out of his lungs. They also had to give him pretty high percentages of oxygen throughout the night. Because of all of this, they switched him from the regular ventilator (they had maxed out the number of breaths per minute) to the high-frequency oscillator.  This ventilator breaths 600 short and gentle breaths per minute.  It is much more gentle and makes slight vibrations to help loosen up the gunk in his lungs.  They've done several x-rays today (Rowan apparently likes getting his picture taken) and they have all been consistent.  He still has some fluid in his lungs, but it isn't getting worse, which is a good thing.  Hopefully the new vent will help get rid of that fluid.  The new machine was a surprise for mommy and daddy when we got to the hospital, but we know that it is what is best for him and hope that it will only be a short lived thing.

They continued the new antibiotics today.  They also repeated his CBC and crp levels.  His crp looked great and went from a 3.8 to 0.9 (they want him below 0.6, so we're getting close).  His white blood cell count was much lower today, but still shows that he is working to fight the infection.  He went from 10% immature white blood cells to 6% and his platelets were a bit lower but still in an ok range.  His red blood cell count also looked good. His blood culture from yesterday is still negative after 24 hours, so fingers crossed that it will remain negative after 48.

This afternoon, the doctors and nurse practitioner decided that they needed to check to see if Rowan's PDA artery had opened back up.  They thought that that could be the reason that he was needing more oxygen today (he needed 60% or higher all day today 😞).  So, they did another echo cardiogram to check his heart out.  Everything came back clear from that.  The doctor said that the PDA artery was just barely open and that it was definitely not causing the breathing issues nor does it need to be treated. This was good news, but still leaves us with a bit of a mystery as to what is going on with his breathing.  One possible theory is that Rowan's lungs are inflamed.  This is most likely because he has been on the ventilator for so long and exposed to so much straight oxygen.  The doctor said that this inflammation is what contributes to asthma.  This is treatable with steroids, but they don't administer those until he is 14 days old and he has to be getting negative blood cultures.  So we are waiting and hoping that he gets to the point where he is requiring less oxygen and that we get some negative blood cultures so that he can possibly get the steroids next week if he needs them.

Today they also did another ultrasound of his brain to check for brain bleeds.  This was just a routine test that they usually do at 10 days old but decided to do it today since he was already being bugged with all of the other tests.  We haven't gotten official results back from the ultrasound, but the doctor said they looked clear.

Needless to say, with all of this going on, John and I were pretty stressed and worried today.  Post pregnancy hormones and having a baby in the NICU are not a good combination.  John has been amazing and remains strong for the both of us when I fall apart into a mess of tears.  There is nothing worse than sitting in a chair watching your tiny baby struggle and knowing that there is nothing that you can do other than hope, pray and stay as positive as possible that things will get better.

On the bright side of today, John was able to sweet talk the nurses and lady at the reception desk into letting Aunt Saige come and visit Rowan today.  She hadn't been able to visit because she isn't 16 yet, but we got her in today and Rowan really enjoyed getting to meet her.  😊

We continue to remain hopeful that Rowan will overcome the issues that are coming up.  He is a fighter and has been stronger and done better than any of the doctors expected him to.  Today we took a couple steps backward, but we're sure that we'll be back to taking steps in the right direction soon.

Love, hugs and appreciation to all of those who are sending positive thoughts and prayers.  We know that they are helping.

We're ready to get back to having good days.

.

Good Days and Bad Days

Upon entering the NICU, we knew that there were going to be good days and bad days.  Today we had our first bad day.  John and I got to the hospital a little after 9:00 this morning.  His nurse was working on getting all of his labs done and her morning assessment.  She told us that his blood/gas levels didn't look very good and that they had had to increase his vent settings quite a bit overnight.  They changed him to 60 breaths per minute which is the highest it has been since the day he was born.  They were also giving him another round of meds to raise the pH of his blood because it was low and also giving him another blood transfusion.  Because of the transfusion they needed to stop feedings for the day.  These were all things that aren't a huge deal and didn't worry us too much because they have had to do this before.  We knew that being so young and little that he would have ups and downs with his breathing. The good news from the nurse was that she was hearing bowel sounds this morning (they didn't hear many yesterday) and that he had pooped during the night. Overall, we were pretty happy with his progress.

Then, Dr. Harris, the infectious disease doctor came in to talk to us.  She said that Rowan's infection wasn't really responding to the antibiotics that he was on and that they were going to change one of them.  She also told us that they think the infection site might be in/around his umbilical cord.  She said that since his "life lines" go in through his umbilical cord it may be causing all of the positive blood cultures, but there is no way to know because we can't remove those lines.  Dr. Harris said that his platelets and white blood count looked good and showed that he was trying to fight the infection.  Then she dropped a bomb on us and told us that she wasn't sure if he was going to be able to beat this infection.  This whole time, John and I have remained very positive and hopeful that Rowan is going to beat this and hearing that just took the air right out of our lungs.  We were certainly not prepared to hear those words spoken out loud.  We know it's a possibility that things could go wrong, but we're choosing to be strong and remain positive for our little guy.

After Dr. Harris left, Dr. Sidlinger, the NICU doctor, came in and provided some major reassurance.  He said that Rowan is doing a great job of fighting the infection and that is shown in his white blood cell count.  He said most babies as young as Rowan don't fight as hard as he is fighting.  He told us that the new antibiotic is one of the best and that he hoped it would help Rowan.  Dr. Sidlinger's words were reassuring, but I remained pretty shaken up all morning.

Rowan had a much better afternoon and after some lunch and a break his mommy felt better, too. 😊 Throughout the day, they were able to decrease his oxygen levels and he became more active. This was reassuring to us, too.  We spent the afternoon looking after our little guy and being thankful for all of the progress that he has made.

I had one of my sweet students visit me this afternoon. It was great to see her and catch up with her on what has been happening at school.  I also had some friends come by and visit Rowan and I which gave John the chance to get out for a bit and run some errands.  He's cooking up something special for Mother's Day and has me very curious as to what he has planned.

Early this evening, they changed the vent bar to a bigger size so that it wouldn't be resting on his face as much.  It's nice to need something bigger for him for once! I enjoyed getting to see his whole face and he is working really hard to open his eyes!  He is doing much better this evening and we hope and pray that the new antibiotics start doing their job and that he starts kicking this infection's butt!

John and I continue to be blown way by all of the support that we have been given.  They say it takes a village to raise a child... Well, we have a pretty darn good village. Keep the prayers and positive thoughts coming!!

Daddy bought "The Little Engine That Could" for Rowan today, so now I'm going to go try to read it to my sweet little boy without bawling my eyes out. Wish me luck! 😊

One Week Old!!

So, when I originally decided to do this blog I thought I would have plenty of time to keep it perfectly up to date.  Boy was I wrong!  I apologize for being a little behind, but here is the latest update... better late than never, right?

Today our sweet Rowan is one week old!  I can't believe it's already been a week since he made his debut.  He is doing remarkably well for his age and size.  He is still fighting a blood infection and he has the doctors sort of perplexed because his blood cultures keep bouncing back and forth from negative to positive.  The NICU doctors are going to consult with the infectious disease doctor (sounds really terrible and scary, but she basically just know blood and infections really well) to hopefully get to the bottom of what is going on.

Rowan continues to breath well on the ventilator.  He is consistently taking between 40-60 breaths per minute on his own over the ventilator.  The vent usually breaths between 25-35 breaths per minute for him depending on how his blood/gas labs look each day.  Sunday, Dr. Sidlinger even said that if he were older, he would consider taking Rowan off of the ventilator and putting him on a CPAP machine.  Since he is still so young, they will keep him on the vent for a while longer.

Yesterday, they started feeding Rowan some of my milk.  He will get 2 mL every 12 hours through his feeding tube.  He did really well with his first feeding yesterday but spit up quite a bit of milk last night.  They thought maybe his GI tube wasn't in the correct place, so they did a chest and abdominal x-ray this morning.  Everything looked good with the tube, but they did notice that he has quite a bit of air in his bowels.  Nothing major, but it did contribute to his bloated tummy and quiet bowel sounds this morning.  They will continue to feed him on a very slight graduated schedule and he will hopefully be up to full feeding amounts in a few weeks.

Today, Rowan's bilirubin levels were low enough that they were able to remove the photo therapy lights again.  This makes him happy because he can't be swaddled when the lights are on so that he can absorb the light.  We've found that he likes to be all cuddled up and he likes sleeping with his hands up close to his face and chest.  I can't wait to cuddle with as soon as he gets a little bigger!

The other big development in the last couple of days is that Rowan is starting to open his left eye!  He's only gotten just a little sliver towards the inside corner of it open, but he is sure trying.  We think we're going to have a blond hair, blue-eyed little boy on our hands.  :-)

The nurses and doctors here have been absolutely wonderful.  I fully trust everything that they are doing for our little guy and am so thankful for their dedication and expertise.  Entering into the NICU, I figured we wouldn't be able to touch him or help take care of him, but we've gotten to do a lot.  We change his diaper, take his temperature and clean his mouth out every few hours.  For the record, he's peed on us twice already... we've been officially initiated into the club of being parents to a boy.  We've also gotten to very carefully pick him up and hold him for a couple of seconds when they change out his bedding.

We couldn't be more thankful for how well Rowan has done in the last week.  They kept telling us the first three days that babies usually have a 72 hour honeymoon and then they sometimes decline or have some set backs.  Our guy is a fighter and although we've had a couple of hiccups with his infection, he is still doing better than we could have ever imagined.  John and I both know that all of your thoughts and prayers are a huge factor in his success.  There are not enough words to express how grateful we are for each and every positive thought and prayer.  Please continue to pray that Rowan keeps fighting off the blood infection and that he continues to get stronger and stronger each and every day.

Mommy and Rowan celebrating his 1 week birthday!

Rowan enjoying some time without his eye coverings.  We are still amazed with how much hair he has... both on his head and on the rest of his body.  He's quite the fuzzy little thing.  :-)

Getting snuggled back in after changing his bedding.

Days 2-4 in the NICU

Here's a look at our days in the NICU from Wednesday, April 27- Saturday, April 30.

Wednesday, April 27

Rowan's bilirubin levels were pretty high (totally normal for his age), so he got to start spending time under the blue lights.  They unswaddled him so that he could absorb more of the lights and it was fun to be able to see him wiggle around.  He loves to wiggle around and stretch. 

Thursday, April 28

I started the day with a walk down to see Rowan.  It sure felt good to get up and move around after being in bed for pretty much 5 days straight.  I may have overdone it a bit though and paid for it later....

Our little glow worm taking a break from light therapy.

Rowan's goggles to protect his eyes when the blue lights are on.  They put these on and then they have to put another cloth around that because he doesn't leave these alone and they slide off all the time.  John and I appreciate the fact that they are purple.  :-)

We love when we get to see his face!  He hasn't opened his eyes yet, so he spends most of his time with them covered to protect them.

Sweetest little face ever!

They let me help change his diaper!  Easier said than done!

Rowan has very tiny diapers and I was more than a little nervous trying to maneuver around all the wires and cords.  

I've changed lots of diapers in my life, but none that were this tiny!  Thank goodness the nurse was there to help.

He's got a fresh diaper and is now ready to relax.  He is not a fan of having a wet diaper.  

I also got to swab his mouth with some breast milk.  They do this to help clean out his mouth and to help build a good lining in his stomach.  The antibodies in the milk help prevent infections and the growth of yucky bacteria.  

Pastor Michael and Janet visited us on Thursday afternoon and brought cards and a poster from the AWANA kids.  They sure put a smile on our faces! 

Some of the gifts that Rowan, John and I have received.  We have been blown away by all of the support and generosity that we have been showered with.  This has not been an easy week, but the outpouring of love has made things less difficult to bear. 

Flowers from Great Aunt Becky and cookies (to help mommy's milk come in) from Aunt Saige.

Friday, April 29

All cuddled up under the lights.