Our Souls Are Heavy

I have been trying to decide when to update this blog during the last two weeks, and today, New Years Eve, makes sense to me.  Ryan and I will be starting a new year tomorrow, so it seems appropriate to post today.

On December 14th, 2013 Gavin was called home to Heaven.  Gavin had contracted some kind of infection while he was in the hospital the week of Thanksgiving, and on November 30th he went into septic shock.  Things were looking very hopeful that he would pull out of it, but on December 7th he developed a pulmonary hemorrhage.  He improved throughout the week again, and he actually got off of the oscillator that had been keeping his pulmonary bleeding at bay.  But, on December 13th he started bleeding in his lungs again.  He pulled through that night, despite doctors leaving us alone with him to say good-bye because they had done all they could.  But at 7:30pm on December 14th I got a phone call when we were out in the lobby eating dinner with my sister and brother in-law, and the person on the other end said we needed to go to his room right away.  We rushed back to Gavin's room and saw that he was very obviously not going to pull through this time.  We freed Gavin of all of the tubes he had been attached to for so long, he was put in our laps, and by 8PM he was gone.  It was so great to say good-bye to him without a single thing on his face.  We hadn't seen him like that since the week he was born.  He was always beautiful to us of course, but he really looked just like an angel as he became one.

Ryan and I can't believe that he overcame so many odds by being born with an omphalocele only to pass away from infection.  The week before Gavin went into septic shock he had really terrible smelling loose stools.  This is a symptom of C Diff, which is a bacteria that is found in people who have been hospitalized for a prolonged amount of time.  Gavin tested positive for C Diff, but it was too late by the time he was tested.  He was already in septic shock, and he had multiple organ failure. This has been something that Ryan and I struggle with because I had brought his odd diapers to the attention of many nurses and to doctors at rounds, but nothing was done.  We are waiting on the final autopsy report, but that will take months.  The initial autopsy report showed that his bowel was swollen and/or inflamed.  This is also a symptom of C Diff.  I post this because there are really risks that go along with prolonged hospitalizations.  Unfortunately for us, the risk was fatal.  So I hope to draw attention to this for families that might have a baby, or any person they know, hospitalized for a long period of time.

After going over the story again, I am still speechless.  Ryan and I will always have a missing piece of our family.  Gavin was such an amazing baby.  He was so resilient.  He was notoriously hard to get an IV in, so he would be poked several times.  As soon as it was over he would be back to smiling and partying.  This is just one example of how resilient he was.  His spirit was amazing, and I hope that I can try to live up to being half as forgiving and loving as he was.

Ryan and I promised to Gavin that we would live a happy life for him when we were saying good-bye.  I couldn't imagine living any other way to honor his life!  He was so happy himself, so I know he would want us to be enjoying life like he did everyday.  It is hard to do that sometimes, as the pain of losing him makes it impossible on occasion.  But we get a little better at it everyday.  Our family and friends have been beyond amazing and helpful, which has been the most comforting thing.  We are working on starting an opportunity to donate to a fund that will be given to a family at Seattle Children's ever December 14th.  And, we plan on meeting Gavin's brothers and sisters one day.  I am 100% positive that any sibling of the G Man is going to be amazing.  But, for now, Ryan and I are just spending time together after living apart so often while Gavin was hospitalized.  We want to focus on our well being and reconnecting.  Plus, Gavin loved hanging out with us both the most.  It was when he was his happiest.  So, we are spending time together.  Besides promising the G Man that we would live happy lives, we promised him that we would live these happy lives TOGETHER.  Anything else would dishonor Gavin.

If anybody reads this blog and is touched by Gavin's story, please continue to honor his life by doing kind things for others.  When you get the chance to do something nice for somebody, please let them know it is from our sweet and loving son, Gavin, if you get the chance.

Thank you so much for reading this blog.  I will pray for parents having a baby with an omphalocele for the rest of my life.  We are a special bunch.

Until we meet again, G Man.

October 17, Then and Now

Today was such a strange day!  I had planned on doing some sort of insightful blog post on this day because it marks one year since Ryan and I found out we were having a boy, and that boy was going to have an omphalocele.  I did spend the day reflecting on where we are today versus this day last year and I would have to say that today was a MUCH less scary day!  The thing I remember most about this day last year was trying to eat lunch at Subway with Ryan after we found out and just feeling like I was having an out of body experience.  I could barely eat.  Oddly enough, I just realized as I am typing this that I had Subway for dinner before class.  It was delicious and I had no problems eating it!  So, if that is a measure of where we are at, then we are certainly doing better.

I do have to say that our lives have not been the same since this day last year.  Gavin's health and well being really has consumed our lives.  We are still in the hospital right now and we have no idea when we are getting out.  Gavin became fluid positive again early this week and we actually got bumped back into the ICU for precautionary reasons.  He is already doing better, but everybody is still having a hard time understanding why he is so sensitive to fluid, and why he can't seem to get off of diuretics.  His continuity of care pulm doctor met with us today for about an hour.  He said we can keep doing things to Gavin that works and just because it works, but he really thinks we need to find out why we are needing to do the things we are doing.  Also, Gavin has gotten three UTI's since being hospitalized, and if he gets another one he will need his hernias repaired.  This means another surgery.  While it is usually a quick and easy surgery, Gavin's whole team feels that nothing is really easy with Gavin!  We are all keeping our fingers crossed that he doesn't get another UTI.

As I stated, we are in a much less scary place.  We know what we are working with, and we also know that we have an awesome son that loves his parents.  Gavin gets so excited to see us.  It is such a great feeling!  But life isn't easy when we are living in a hospital.  Our house is a disaster.  Our neighbors take care of the dogs, but they are alone in the house most of the time.  They don't know what rules are anymore!  We also had to start paying a lawn service to mow our lawn with our ever dwindling savings account.  Ryan juggles so much.  The lawn was just one more thing and it was just too much to handle.  Ryan goes home everyday except Thursdays to take care of the dogs and the house a little, then drives an hour up here to see Gavin and I, then heads home again to be with the dogs and go to work the next day.  On Thursdays he comes up here straight from work because I have class.  It is just such a draining life.  I also go to my practicum two days a week, and one of those days I drive up here afterwards and then head home at about 9PM.  We do our best to keep each other's morale up, but it just gets so exhausting.  And we are really sort of staring into the unknown.  We have no idea how or when Gavin will be well enough from a respiratory status to go home!  But I can honestly say when I get up here and he sees me and gets excited I know we are doing the right thing.  And home has really become where the three of us are together, and right now that is Seattle Children's Hospital.

Gavin is still such a fun loving guy.  He is happy almost all of the time.  He has been working on eating solid food lately and he has done pretty awesome for a kid who hasn't eaten orally all that much!  He is also becoming slightly famous!  The Seattle Children's Guild newsletter is doing a cover story on Gavin to help the Guild members understand how important it is to continue raising money for families who have children hospitalized.  Since we have almost been living in this hospital for half of a year, they thought Gavin is a good representative for this story!  AND, there is going to be a tree dedicated to Gavin at the Festival of Trees this holiday season.  We think he is a pretty awesome dude, so all of the attention makes total sense to us!

I Stink At Blogging

Okay, I officially stink at blogging.  Gavin is 6 months old now.  I know, totally slacking.  BUT, we have good reason.....

So, in mid July Ryan flew to New Jersey for a two week training for work.  I was home alone with the G Man.  The first Friday Ryan was gone Gavin woke up crying an unusual cry, then proceeded to turn a very odd shade of maroon, then stopped breathing.  He snapped out of it, and I assumed he was pushing down on a major vein, which is called a vagal response.  Well, Saturday night rolled around and the same thing happened, but much worse.  Clearly something was very wrong.  I called Seattle Children's in the morning and they sent an ambulance to take us to Children's since I was home alone.  The EMT's arrived and when they put Gavin in his carseat on the gurney he quit breathing again and actually needed to have CPR performed for about 5 minutes.  It was terrible.  I am very thankful that I stay calm in chaos because I was able to think fast.  So the ambulance ride went from non-emergent to very emergent.  We arrived at Children's and we went from the E.R. to the PICU, and we stayed in the PICU for some time.  Nobody could really get a good idea about what was going on, and Gavin's surgeon was out of town.  When he got back he instantly figured out what was wrong, and after some tests to confirm it, he discovered that Gavin had an artery laying over his airway that was causing compression.  The condition is called tracheamalacia.  So when Gavin would get upset and cry, the artery would clamp down and his airway would close off.  The good news is that Gavin's surgeon could fix this by suturing Gavin's aorta to his breast plate.  Had he just had a floppy airway, which was the original concern, we were staring into the eyes of a tracheostomy.  Not good.  Not good at all.  I am not telling this story to scare people, but to let other parents of O babies who stumble across this blog know about tracheamalacia because O babies are at a higher risk for having this.  I had no idea!

Gavin had surgery on August 1st, and it went very well.  His surgeon was very happy with the outcome, and he would know since his dad wrote the textbook on the procedure!  The plan was to take him off of the ventilator the next morning and then go home in about a week.  WELL, as always, Gavin had a different plan.  At 5:00AM the vent started alarming because Gavin was breathing very fast and his heart rate was through the roof.  He was also very swollen.  He was retaining quite a bit of fluid post surgery, and actually had fluid in his chest cavity around his left lung.  This is somewhat common after surgery, but Gavin's lungs are already small, so he doesn't have the reserve to battle this kind of thing.  Also, he had a urinary tract infection!  Gavin remained on the ventilator for 15 days after that, and if it wasn't for an amazing PICU attending (Dr. Brogan), he likely would have been on the ventilator longer.  After he was extubated he was doing great and we went to the floor.  BUT, then he got another urinary tract infection, so back to the PICU we went.  We were there for three weeks while they tried to figure out what Gavin needed.  Unfortunately Gavin is hooked on narcotics and also got used to having diuretics.  So, when he doesn't have diuretics, he retains fluid which makes breathing a little more challenging for him.

Where are we now?  On the floor, trying to get him to a good spot with his fluid balance, and then hopefully get him off of high flow oxygen.  The FDA doesn't allow kids to go home on high flow, so we need to be off of that to get home.  The hope, and most likely scenario, is that once he gets his fluid balance to a good spot he should come off of high flow.  Then we will go home and let him grow out of his diuretic dose and also finish his narcotic wean.  Let me tell you: a baby going through withdrawals is the most emotionally draining thing you can ever experience.  They sweat, cry and twitch.  It is horrible to see our normally happy little guy do that.  So sad.  But he is getting better and he has been smiling and flirting with the nurses like his old self more often.

It is so funny to think that Gavin's omphalocele is such a non issue.  It is almost fully covered in skin, and it is much smaller.  Well, it is smaller when he isn't swollen from retaining fluid!  The plan is to do surgery sometime after the viral season has ended.  I often wonder if this will really be the end of this chapter for us.  It is hard to imagine since we have had six months of medical complications.  I think I am just so used to this life that it might be hard to imagine not having this stuff going on.

People continue to amaze us.  Having a medically complicated baby brings out the worst and the best in people.  Some people who we thought would be supportive have vanished.  But others have shown a side of themselves we have never seen.  For instance our next door neighbor is paying their lawn service to mow our lawn.  Another great example is a great friend I made on the Moo's website brought me lunch and visited with me today.  When I have a down day (like the last couple of days after the nanny I had lined up dropped a bomb on me that she couldn't watch Gavin....a week before my next quarter of school started), I remind myself that at some point this is all going to be history for us and then Ryan, Gavin and I can have the chance to go out and do stuff like that for others.  This has been such a great lesson in how we want our family dynamic to be moving forward.

Well...hoping to be home before Halloween!!!  I might have a good costume planned.  :)

Three and a Half Months of Life

Hard to believe Gavin is going to be three and a half months old tomorrow! He is not our tiny newborn anymore.  He weighs over twelve pounds, babbles back to us when we talk to him, and has recently started grabbing things with his little chubby fingers.  It is so fun to watch him start to figure out the world.  He is also starting to get a lot of neck strength! 

 

Health wise he is trucking right along.  He is growing well, which is the best thing for him.  As much as I hate, hate, hate the NG tube, I know it is a necessary evil.  He needs to grow for his omphalocele to keep shrinking, and he needs to grow so his left lung can heal to get him off oxygen.  His omphalocele is literally 1/3 of the size it was at birth and it is almost covered in skin!  Sometimes you wouldn't even know he has one when he is wearing certain clothes!  We are doing compression with an Ace bandage and his surgeon is so happy with the progress his omphalocele has made.  The plan is to do surgery in 6 to 9 months, so somewhere between December 2013 and March 2014.  Part of me can't wait, but another part of me is pretty nervous.  I have moments where I look back on Gavin being intubated when he had rhinovirus and I get a little overwhelmed remembering what it was like to see him cry and try to communicate with us with a tube in his mouth.  It was just awful.  I know he will likely be intubated again for surgery and I just start to feel sad all over again.  Granted, his surgeon wants to wait until Gavin is 9 to 12 months old in hopes that we avoid intubation.  But I know it is a possibility.

Life is a little hectic with an O baby at this stage!  Everything takes a little longer than it does with a non-O baby.  Plus Gavin is still on oxygen and a breathing tube, so getting around is difficult!  Especially when you are 5'3" and trying to get him out of an SUV in pouring down rain while holding his oxygen tank, feeding bag, and diaper bag.  I have perpetual bruises on my arms from this!  Also Gavin battles some reflux which isn't so fun.  Some days are good days and other days aren't.  It isn't fun to watch.  The hope is that he starts to outgrow it in a couple of months and that we will also be done with compression soon, which is likely aggravating the reflux.

While life is hectic, we wouldn't change it for the world!  We do have days where we talk about how nice it will be a year from now, but we enjoy watching Gavin develop and the miracle that his little life is.  He is such a smart and curious little guy.  We recently started working with a well known feeding therapist and she was so impressed with how smart he was. Although he is a little too smart and has stopped eating orally because he realizes that it can cause him to reflux!  Hence working with a feeding therapist!  But he is a ton of fun and we are looking forward to continuing to watch him grow!

We are also celebrating his O buddy Hayden's successful closure surgery yesterday!  Hayden has some great parents, and his grandparents have kind of adopted Gavin!  They send him adorable outfits every now and then.  And they know exactly what outfits work best on an O baby, so they get a lot of use!  This whole experience has really shown our family the importance of a small gesture.  Hayden's family brightens our days by thinking about us!  

Well, stay tuned for more updates and adorable photos!  Now that we are getting the swing of being new parents I am hoping to update this blog more often!!!

Mothering is a Full Time Job

Wow, okay, I have really slacked on the blog big time!  So many things have happened!

First, we are home!  We got discharged on May 8th, so we were home in time for Gavin's 2 month birthday and for my first Mother's Day!  We were so exhausted from everything that Mother's Day was kind of a blur, but Gavin got me some cool stuff, and we went for a family walk!  Honestly, being home was all I needed.

What is home like?  Hectic!  We came home on continuous feeds through an NG tube, and Gavin is still on the tiniest whiff of oxygen from the rhinovirus setback.  Pulmonary seems to think he will be off of it in the next couple of months.  Fingers crossed.  We ended up back on continuous feeds because Gavin just all of a sudden stopped tolerating his bolus feeds.  Since it is so important for him to grow, I understand the importance of getting him all of his calories.  After he was home for less than one week he also gave us a horrific scare by refluxing while crying, which closed off his airway.  Ryan had to perform CPR and we ended up back in the hospital for two nights.  Right now he has an ND tube that bypasses his stomach to reduce the chances of that happening again.  We still work on oral feeds three times a day, and he still does well with it.  It is a delicate balance with these kiddos because they need to grow so they can have room for their organs to return to their stomach cavity.  Also, Gavin needs to grow so his left lung can heal!  After the rhinovirus setback we had some studies done and Gavin's left lung is a little underdeveloped, which is so common for O babies!  That is why the virus was so hard on him.

Right now the plan is to just keep doing what we are doing.  His omphalocele has shrunk by at least 30% and it is growing new skin on it like we need it to.  He is also growing well!  The last time he was weighed he was almost 10 pounds!  He is such a fun baby.  He is discovering his voice lately, and somehow he sleeps almost all the way through the night!  I have to admit that I was so focused on getting home that I wasn't totally prepared for the craziness of being home.  Having a baby here has been quite the adjustment, but well worth it.  We are starting to sink into a routine with him and also trying to find time to catch up on our DVR!

While being home is such a HUGE milestone, I know we still have a journey ahead of us.  We still have to work on oral feeds, getting off the oxygen, and have closure surgery.  Tuesday is our first outpatient clinic day at Seattle Children's and I am excited for his attending surgeon to see how well his omphalocele is doing.  But, in the mean time we will continue to enjoy Gavin and the excitement he brings to the house.  The dogs....they are still adjusting.  :)

I will share Ryan's post that he posted on Gavin's private Facebook update page:

Well, Gavin is home! Not the home that he has known for nearly two months at SCH, but his real one in Orting. As all of you know, it's been a very long, and twice extended, haul. As you can see from the picture, the family (aka The Pac - without the "k" because we live in the Pacific Northwest) is very happy to be reunited, and for the pins and Gavin, happy to be meeting each other for the first time. It's all been a very surreal and kind of hazy experience, but I believe that it will help us be better as a family moving forward.

I'd like to thank each and every one of you: family, friends, and even people I don't know personally, for being a part of this and for helping us out along the way. Many of you have helped by visiting, bringing us meals, and cheering on Gavin as he made itthrough this whole ordeal. On top of being extraordinarily helpful to our family, you have also shown others that have similar situations that it is possible to make it through something like this, especially with great family and friends to rely on.

I'd also like to thank my beautiful wife (Carly, I think most of you know her) for being such a great mother, and making sure that Gavin was always taken care of in some unique situations. She has been an amazing friend, an amazing wife, and now it looks like she's going to three-peat by being an amazing mother too. I can't express enough how much I love her for all of this.

Thank you all so much again for everything, and I hope that you all know that if our family can ever do anything to help any of you down the road, just let us know and we will be there.

I think we are now ready to start the next stage of this journey, and everything seems right in the world now because Gavin is home.

Ryan

1 Month and Three Days!

I was planning on updating this blog on Gavin's one month birthday, but that turned out to be quite the day for us.  I will explain:

Gavin had to be re-intubated in the middle of the night on the Friday after he was extubated.  That Thursday I noticed his nurse was not suctioning his throat enough, and I could tell he was having a hard time breathing.  I woke up for a date with my yellow beast (otherwise known as the hospital pump), and found a voicemail on my phone from the NICU saying that Gavin's blood gas was very high because he was struggling to blow off his carbon dioxide again.  Surgery also ordered another ultrasound of his heart to make sure that there were no other reasons that he was having a hard time being extubated, but at rounds everybody agreed that it was a mucus build up that plugged his left lung.  Hours after being extubated he had already turned around and was doing worlds better because the ventilator opened up his left lung and got the mucus out.

WELL, Monday things got completely insane.  I was walking into Gavin's room at about 4:15PM while Ryan was out running errands for his new job that starts Wednesday.  I saw a huddle around a woman in a white jacket, which means she is an attending (big wig).  She looked very excited about what she was talking about, but the residents around her did not.  I thought to myself "man, glad they aren't talking about my kid."  Well about that time the residents all looked at me like I was walking into my own funeral.  I knew it.  They were talking about Gavin.  Sure enough the woman in the white jacket walked into Gavin's room a few minutes later and dropped a bomb on me.  She told me that Gavin HAS pulmonary hypertension and that she also sees that his veins are narrowing on the ultrasound, which indicates a disease called Pulmonary Vein Stenosis.  She did say that the ultrasound is not a great way to check, so he would be going to have a heart cath (put a camera into his heart!) and that she hopes she can get us an appointment in the next 48 hours to have that done.  Uh.  What?  I was in tears saying I didn't understand and that he was fine before he tested positive for rhinovirus, and that I really felt that was the activating event for all of this.  She said that wasn't the case, and then just left me there in tears.  I can't say this was the greatest way to deal with this.  Not to mention, we didn't hear about having an appointment for almost 24 hours!  Our nurse even called a care meeting because Ryan and I were so upset over how this was handled.  So, we ended up getting an appointment set up for the upcoming Thursday.

Wednesday hits.  A very nice cardiologist named Dr. Rubio meets with us to tell us he would like to do a flow scan first, which is less evasive, to see if maybe this is all just nothing.  The flow scan is done Thursday morning, our nurse comes in to tell us that Gavin's flow scan shows he has Pulmonary Vein Stenosis (PVS), and there is nothing else that could be causing the results.  Dr. Rubio comes back to say that he will be doing the heart cath to see how bad the PVS is, and that Gavin will survive, but will be in and out of having heart stents/balloons and open heart surgeries for his entire life.  Also, it would be unknown just how long he would survive.  Maybe to 7, maybe to 50.  Uh.  WHAT?!!  So, as you can imagine, we are completely devastated.  I could not find one peer reviewed article that indicated any good outcome for this.  Gavin was taken back for his heart cath, and Ryan and I just sat in his empty room in almost complete silence for about two hours.  I sat in a chair and cried off and on, and prayed silently for a miracle.

Dr. Rubio comes back at 7pm and asks "Are you ready?"  Um, YES!!!!!!  He sits us down and draws us a diagram of Gavin's innards and explains that Gavin's heart is pulled over to the right a little bit, and that this caused one of his pulmonary veins to take a little bit of an interesting route.  He also explains that Gavin's top lobe of his left lung isn't working as well, but it is likely due to the rhinovirus.  Also, even if it isn't, he can lead a totally normal life like this.  So, Gavin does not have PVS.  At all.  Actually, he doesn't even have pulmonary hypertension!  I will say that it appears that some people jumped the gun on this diagnosis, and I don't like how it was handled at all.  But, in the end, who cares.  We are just glad he does not have a chronic heart disease!!! And, we got all of this information delivered on his one month birthday!  A miracle is always the best gift to get.  :)

I hope that other parents of O babies remember this if doctors ever start handing out a diagnosis.  When a baby has an omphalocele, there is a lot of pressure, and it tends to pull on other organs.  Dr. Rubio said it is likely that all of this will correct itself as Gavin grows, and the omphalocele shrinks.  All along our surgical team was a little leery of the PVS diagnosis, but that is because they have so much more experience with omphaloceles.  Another O mom reminded me that a diagnosis isn't final until the tests are done.  :)  Thanks Kelsea!  This was so true for Gavin!

So, we are out of the NICU now, and just working on getting him eating and off of the oxygen he still needs because of the rhinovirus.  So, hopefully we get to go home in the next couple of weeks?  :)

23 Days In

Well, a lot has transpired since my last post.

Things were going so well, and we were up over halfway to our goal feed amount.  Our supplies for home had been ordered, and people were discussing carseat options.  THEN, I started noticing that Gavin was a little more drooly than I had noticed before.  Then he started having trouble eating because he seemed congested.  Surgery was determined that it was the food increases, I thought it was the NG tube bothering him.  Eventually things got really bad and the medical team tested him for some respiratory infections.  Turns out the little guy has rhinovirus, which is a virus that causes a super baby cold.  It has been a slowwwww crawl ever since.  Right now I am sitting here in the NICU watching the little guy cough on high flow oxygen.  This is an improvement, as last Friday he was intubated.  That day will go down as one of my least favorite days ever.  He was extubated yesterday, but he sure has a lot of phlegm that he is coughing up, and that phlegm is making him work a little hard.  We are now at 5 cc's an hour through his NG, but that is a longggg way off from what his goal will be.

His omphalocele is doing great.  Surgery is very happy with where it is at in terms of thickening.  He was born with a pretty thin membrane that was totally transparent.  Now you can't even see through it.  His attending said that they will probably be comfortable being a little more aggressive on his food increases since the membrane is so thick now, but he has to get rid of this virus first.  When that will happen is anybody's guess. I have to say the virus has been more of a low point for us than the omphalocele.  He has spent over twice the amount of time in the NICU from the virus as opposed to the ompahlocele!

We have heard that the omphalocele journey is a roller coaster, and this has been true for us.  We went from hard charging home, to hard charging many steps backwards.  Hopefully he will be over this soon and we can work on getting him home again!

Where is Time Going

Wow.  Time in the hospital goes at a different pace.  I have been trying to update this blog, but between not sleeping, pumping every three hours, rounds, occupational therapy, physical therapy....you get the point.  Things are crazy!

Where are we now: We graduated to the surgical floor on Thursday, so Gavin was only in the NICU for three and a half days.  But, our next step is a big one.  Feeding.  Ugh.  Gavin's omphalocele membrane was pretty thin, so we are being VERY conservative with feedings.  Right now he is getting 5 cc's an hour of breast milk.  He is getting this through an NG tube (through the nose), and then we also give him 5 cc's twice a day orally through this really cool binky trainer. Basically I connect a syringe of breast milk to the end of a tube that goes through the tip of a binky.  I worked with occupational therapy today while using the binky trainer and Gavin has excellent eating abilities, other than the fact that he gets worn out because he has a giant ball of weight on his stomach.  So, stamina is going to be his biggest challenge.  As he grows, this should become easier.  Thankfully he had a giant poo today, so things are definitely working in there.  Also, his omphalocele is thickening up nicely.

In terms of going home, the hope is that we will be going home in two weeks.  We have three goals that need to be met.  1.  Gavin needs to gain weight.  Thankfully he gained some weight last night.  2. He needs to be getting at least 21 cc's an hour of breast milk, and the hope is he takes one of the hour's worth of food orally.  3.  Ryan and I need to be doing the dressing changes on our own.  I am not worried about this.  We were telling the residents this weekend how we like it done.  Although, it is definitely a two man job right now.  Gavin has some strong legs.  Doctors and nurses even comment on how strong he kicks!  Either way, I am really hoping his feedings progress.  After we go home we will have in home occupational therapists and outpatient visits to children's to keep working on transitioning him to complete oral feedings as he grows.

Hospital living is exhausting.  We don't get the luxury of sleeping when Gavin sleeps because there are constantly people coming in our room to talk to us about him.  It is exhausting!  I have also discovered I do not want to leave him here alone over night.  So, hopefully that won't be an issue for too entirely long.  We just need to see what he can do in terms of eating.  And we are thankful to be out of the NICU.  We actually get to do parent things while we are staying in his room.  It is nice to be able to change his diapers and hold him whenever we want.  And we are slowly losing wires as he requires less and less monitoring.  Right now we are down to his IV that is pumping him full of extra nutrients, and then his NG tube that is continuously feeding him breast milk.  What a relief!

Overall, while we are so exhausted, life is easier knowing what we are dealing with.  I get antsy to go home, but I remind myself how lucky we are that he is doing so well.  Also, I have to slow down and remind myself that this will pass, and soon this will all be a memory.  But I definitely have moments.  Yesterday was rough.  I didn't realize that we would be starting his feedings through an NG tube, so it was pretty rough to hear.  I was concerned about losing the ability to feed orally, and I just hated that we had to put another tube in him after enjoying a tube free face for so long.  I guess it just felt like we went backwards.  After a night of some sleep, I realized it is a step in the right direction.  But, there are just moments that I feel terrible that he has to go through this.  Sometimes I just need a good cry here and there.  It happens.  It is just hard to watch your child have to fight such a fight.  You feel helpless as a parent, and you know that you would do almost anything to fix it if you could.

All in all, like I said, we are lucky that Gavin is doing as great as he is.  We just need to get through some hurdles and we can get him home to his Star Wars nursery.  The Force has been with him thus far, so I have a feeling that it will continue to be with him.

Until next time!

Carly, Ryan and Gavin

Life Changing

Gavin Michael Christiansen was born in 3/11/13 and has basically kicked some serious butt from the get go! Gavin weighed 6 pounds 5 ounces and never required breathing assistance!

Right now he is in the NICU already graduated into a big boy bed. Rumors are flying that we will be out if the NICU by the end of the week, and there was talk of us going home next week if everything is perfect! The only thing keeping us in the NICU is that he breathes a little fast sometimes, so they want to make sure that it just remains stable. I am so grateful that things have gone so well. Prayers have been more than answered!

I have to say that having Gavin in the world has been a million times easier than being pregnant and not knowing. This experience has been much less stressful than I thought it would be. Gavin looks just like his dad and I couldn't be happier about that. Ryan has been such a great dad and jumped in fearlessly while I was over recovering. It has been an awesome experience to go through with him. I am so proud of his parenting already.

Well! I am exhausted from pumping every three hours while recovering from my c section! Time for a nap.




Carly, Ryan and Gavin

5 Months of Lessons

I had a grand plan to get up and write this blog early with my 8 oz. cup of coffee while Ryan slept in, but alas, day lights savings and pregnancy sleep messed me up!  Plus, Ryan actually got up with me so that he could go to bed at the same time as me tonight.  The life of a morning person married to a night owl.  :)  Always a balancing act!  But, I will attempt a meaningful pregnancy wrap up post to the sounds of Ryan and the dogs milling around the house.

I feel like the last five months have flown by and gone by very slowly all at the same time.  I am not sure how that is possible.  I do know that the October 17th will be one of those dates that is etched in my memory, as that is the day we got the omphalocele diagnosis.  Along with that date being burned into my memory, I also have five months of life lessons that will be with me forever.  I have next to nothing figured out in life, so I am sure my ramblings will mean very little to most people.  But if one mother or father going through this diagnosis gets any benefit from my thoughts, then it was worth it to write them down.  Gavin has his O buddy Max's blog to thank for my resilience in this pregnancy.  After Ryan and I were counseled on termination only at a maternal and fetal medicine clinic in Tacoma, I hit a rough patch.  After a day of crying and laying in bed (not my usual coping technique), I got mad and got online.  Max's blog was the first one I found and it gave me the courage to seek more information and get a second opinion.  Now Ryan and I are worrying much more about how long Gavin is going to be in the hospital as opposed to if he will come home at all.  This is a worry I like to have.  So here are some things that the last five months has taught me:

Fear- Fear is a complex topic.  Humans have fear for a reason:  It guides us.  If we were fearless we would almost certainly be extinct.  But fear also gives bad decision making a place to hide.  When I found out about the omphalocele I had to tell the owner of the company that I was doing contract work for about it because I would be losing some availability to work due to doctors appointments.  The owner of that company is a former pastor, and he reminded me of the story of Jonah.  Jonah ran from God out of fear, and evil was hiding in that fear.  He then ended up in the belly of a sea beast.  There is actually a lot of secular reference to evil hiding in fear also, including a song that just so happens makes me think of Gavin by Phillip Phillips called home.  Anyhow, after being reminded of the story of Jonah, I decided that I was not going to let the fear that was instilled in my by the first perinatologist guide my decision making.  I won't lie to you.  After that appointment I was more scared than I have ever been in my life.  The thought of going through an entire pregnancy to lose our son scared me on so many levels.  Mostly, I was scared of what it would do to Ryan and I.  Losing a child must be the most challenging thing a couple can go through.  I didn't want our relationship to go through that.  While being a mom is going to be the most important thing I have ever done,  I am fully aware that I wouldn't be a mom without Ryan.  We have pledged to not let parenting come before our relationship, and that is a pledge I take seriously.  Our kids are going to know that we love each other.  But I will get to that later.  Bottom line is that had I given into fear, I may have ended up making a decision that I wouldn't have been able to take back.  That first doctor we met with had an agenda, and she was very invested in us terminating this pregnancy.  It was unethical behavior in my opinion, as I am trained to provide clients with all of their options and stay neutral to their decisions.  So, was she evil?  I am not the one who has to judge that thankfully.  But, I can say that there was a very bad decision hiding in the fear it caused me.  I am grateful that I was reminded of what fear is capable of doing, because Gavin's prognosis is very different today.

What Am I Doing For Others?- I try to use all experiences for self reflection so that I don't go through life a total idiot.  I have to say that I have seen a lot of good in people during the past five months.  From my class mates in my cohort at school being so supportive and sweet, to my cousin sending us gift cards to eat with when he is living on student wages (which usually equals no wages!).  I have been touched by all of the people who have come forward just to check in, offer to mow our lawn, or watch our dogs.  I see people giving all of the time to flashy things that get them attention.  Giving is giving, so there is nothing wrong with getting some props for doing so, but there is nothing flashy about helping us out.  People who have offered to help us are just doing this from the bottom of their heart.  They aren't going to get a plaque, attention at their church, or their name on the radio.  They are just helping because they are kind.  It seems that our society is slowly becoming more and more distant, and this is especially true in the Pacific Northwest where we are all plugged into the latest gadget and trying to get home as possible through hours of traffic.  I can't help but notice that there are some scary trends in society that seem to be increasing, such as mass shootings at elementary schools and move theaters.  As these trends continue I wonder if it is because we are so removed from caring about others.  Civic engagement is at an all time low, and this social capital is important to society.  I have done a lot of self reflection on this subject, and I have decided that I am going to be more aware of what Ryan and I are doing for others after this.  Obviously I am going into social work, so I will be helping others is my chosen career path.  But, from now on when people we know are needing help, it is going to be more of a priority than it was before.  That is the legacy I want to leave, and that is the example I want my kids to see.  Even if it means we aren't buying as much for Christmas.  As the line from a Social Distortion song goes "You've never seen a hearse with a luggage rack."  So true.  But, you do see people at funerals because you are remembered by your relationships and contributions to others.  I will remember everybody that offered to help us out for the rest of my life.  We are so grateful.

Pick Your Team Wisely- I can't stress to any O baby parent how important it is to get the right doctor.  Even after our terrible encounter with Dr. Termination, I still was tempted to keep our care in Tacoma.  It would have made things so much easier logistically.  Having Gavin up in Seattle is going to be a logistical and financial nightmare, as traffic to Seattle at least doubles the time it takes to get there and we will be having to obviously pay to drive and eat there.  Tacoma is 20 miles away, and I go to school literally a mile from the hospital.  Well, after getting a better medical team, I can tell you that every hour in the car is well worth it.  Had we not done our research (thank you Moos group) we wouldn't have found out about Seattle Children's and I would probably be a hot mess right now.  Find out what hospital in your area has the most experience with omphaloceles and make it work logistically.  From our experiences it sounds like any Children's hospital is going to be your best bet.  Having experienced both, I can tell you it is absolutely worth it.  If your medical team is focusing too much on the negative, get a new one.  All you can do with an O baby is confirm as much as you possibly can, and then go with the odds.  I don't know how Gavin's lungs are going to be tomorrow, or if his diaphragm is okay, but based on what we see the odds are with us.  I know this because my experienced doctors say so over and over again.  Stay away from the fear mongers!

Get Connected- If any parent of an O baby stumbles across this blog and hasn't found the Moos group yet, find it!  I am not saying that this group is going to cure the omphalocele, but it has been so incredibly helpful to us.  Thanks to this group I have seen hundreds of pictures of healthy children who have no sign of the challenges they had when they were born.  Also, we found out about how experienced Seattle Children's is with omphaloceles through this group.  There is likely somebody in your area who has experiences with hospitals in your area.  I have also gotten a good idea of things to advocate for in the hospital, like trying to do oral feedings as soon as possible.  Not to mention I have made some great friends from across the country.  Ryan and I have already had dinner with one set of O parents, and we are planning to meet another O family in May.  It has allowed us to not feel so isolated amongst the throngs of healthy pregnancies around us!

Love and Marriage- I will finish with this topic because I think it is the most important.  Even before the  omphalocele diagnosis, pregnancy changed my relationship with Ryan.  I felt like I was suffering from a 24/7 hangover during the first trimester and just wasn't myself.  It was not easy!  We had 7 years of freedom to do whatever we wanted, and all of a sudden I was just not as available to him as I once was, and honestly I didn't care at times!  I felt like crap!  That made me feel so guilty.  As the old cliche goes, marriage isn't easy.  You are combining two adults from two different tribes who have two different ways of doing things.  Now, add in pregnancy and it gets more complicated.  Bottom line is that pregnancy is just different for the each of you, and you each have your own way of coping, and that is okay.  I think that society likes to talk so much about how different men and women are that maybe we forget to look at the similarities.  As I started to really look, I saw that Ryan and I were not dealing with this all that differently at all.  Sure, we might have showed it differently, but we were going through this together.  Once I really quit applying my expectations to him, I saw just how supportive he really was.  There is no way that I could have gotten through this without him, and I really think that this experience has shaped us into the parents we will be, and has strengthened us as a couple so that we will be parenting together.  I am looking forward to it!  And I am forever grateful that I ended up with him.

Like I said, I really am just as lost in life as the next person, so for all I know everything I just said is totally out to lunch.  But, there is a chance it isn't.  I hope that our experiences with Gavin show at least one person that you can get through this pregnancy, and you can do it with a great perspective.  Heck, I think we will end up better parents, family members, friends and spouses because of this experience.  I wish any family going through this luck.  I do not know for certain what is in store for Gavin tomorrow, but I do know that Ryan and I took a leap of faith, and that it is going to pay off no matter what comes our way.

I am looking forward to posting things from our next chapter:  Parenthood.  :)

Keep us in your prayers over the next 24 hours!

-Carly, Ryan and Gavin

Okay. This Was The Last Appointment!

Our last appointment at UW was short and sweet! Of course this was after sitting in traffic for the entire duration of the drive! But we are glad we have the next four days to take it easy after a good non stress test. Gavin's heart showed great acceleration. So now he just needs to take the next four days to get his lungs working in tip top shape! I am busy planning my final pregnancy dinner. Thinking a burger at Red Robin might be in order this Sunday! I have been pretty good with not giving in to cravings, and I won't be able to eat for 24 hours after dinner on Sunday. So heck! Why not go out with a burger?

Gavin's room is all ready for him when he decides to come home. Ryan and I are looking forward to that day more than words can describe. Last night we put the finishing touches on his room! I have attached some photos below!

Well, I am off to enjoy my last four days before life gets crazy! I am also planning a little wrap up pregnancy post this Sunday for all of you parents who find themselves chosen to have one of these special kiddos. Stay tuned! I am sure it will be full of insight! :) Okay, maybe not. But perhaps something will resonate with somebody out there who is going through this same situation.

What We THOUGHT Was Our Last Appointment

Tricked!  Ryan and I were so looking forward to not going back to Seattle until the c-section this coming Monday, but turns out we will be back for another non-stress test this Thursday. And at 9:20 AM to make matters worse.  Rats!  Gavin's stomach didn't grow as much as they would have liked it to over the three weeks between ultrasounds, so they want to keep a closer eye on him to make sure he isn't having restricted growth overall.  We had an ultrasound today to measure the flow through his umbilical cord and it looked great.  They also measured the fluid in there and it was also good.  So, it is likely that the lack of abdominal growth is due to his stomach finally sneaking into the omphalocele.  But, overall, his abdominal cavity grew better than was expected for a long time, which we are both thankful for.  The non-stress test Thursday is just to be on the safe side, which is a good thing.  Other than that, he is still looking good, and he is running out of room!

Hard to believe that he will be out in the world a week from today.  I am still having contractions off and on.  Last night I thought we were going to have to head in to have him early, but they stopped.  They are really a pain!  I was examined today and it looks like my body is just preparing for labor, as it should be at 38 weeks and 4 days!  So, nothing to be alarmed about.  We have our bags packed just in case.  Overall we are just counting down the days and taking care of last minute things.  And, of course, looking forward to meeting Gavin most of all.  This has been a wild ride and I think we are both ready for the next ride to begin.

Thanks to everybody who has been checking in on us, praying for us, and/or signed up to help on the care calendar.  Things are going to get even crazier over the next week and we couldn't do this without your help.  :)

Until next time,

Carly, Ryan and Gavin

Labor: It Must Hurt.

We are in the home stretch!  Hard to believe we will be meeting Gavin two weeks from today.  We went up to Seattle for our final ultrasound.  The next time we see him will be his birthday.  Gavin was a little more mellow today, which was odd since his dad was also sleepy and dozed off for 20 minutes during my NST test.  I guess even Ryan and Gavin take naps.  We did get to see his hair and his "fat rolls" on the ultrasound.  Apparently he has stolen Ryan's hair and has been eating all of my food.  Besides being cute, chubby, and having more hair than his dad, Gavin looks great.  Everything looks stable and we are just carrying on like normal.

On another note, I have been having contractions!  I thought I was for the past few days, but I had no idea what a contraction felt like.  Sure enough, I had one during my non-stress test and a nurse walked around the corner at that exact moment and told me that the monitor was picking up a contraction.  Ouch.  I must say that they are not the most comfortable thing I have ever experienced!  They checked me out and it does not appear that I am showing any signs of going into labor, so I can only imagine what active labor feels like.  Eesh.  We did leave the office with a warning that I need to head in if I start having them every five minutes, and that "anything can happen" at this point in pregnancy.  Meaning I could go into labor at any time since I am considered full term now.  Not what I want to hear!  I am anticipating two more weeks of working out, school, and hanging out with Ryan and the dogs!  BUT, I suppose if Gavin decides he would like to come party with us earlier, we will be okay with that.

When we got home there was a package at our front door, and it turns out it was from Gavin's O baby buddy, Hayden!  Hayden and his parents were kind enough to send us a little NICU care package.  Since they were just there with their little guy, they knew exactly what we would be needing.  Best of all was a stuffed seal, which O parents must name Omphalo Seal.  Hayden had his own Omphalo watching over him while his parents were away getting some sleep, so now Gavin has one too.  I can't express how great it has been to have the parents of Gavin's O baby buddies, Hayden and Max, to talk to.  I hope that all parents who find themselves chosen to have an O baby find parents who have gone through the same situation.  I think it has helped Ryan and I feel more "normal."

The photo below is of Gavin's NICU gear.  The gear includes his blanket (from Aunt Stacy, Cousin KK and Uncle Todd), a stuffed Yoda so that the force is always with him in the hospital (from Gavin's awesome parents), and Omphalo Seal.

Monday is our LAST appointment at UW before the big day.  I have to admit Ryan and I are looking forward to not going to these appointments anymore!  They are long, I get hungry, and Ryan gets antsy.  Plus, I think it is just time for Gavin to get out here so that his awesome doctors can get him on the road to coming home!

Hope everybody is doing great!

Carly, Ryan and Gavin

19 More Days?

Hard to believe that Ryan and I are closing in on the last two weeks of our two human and two canine life.  We have been enjoying it by becoming completely addicted to Downton Abbey.  Great show!  We are entertained and the dogs are spending quality time with us curled up in the blankets while we are watching.  Either way, it is a little bittersweet to think that Ryan and I will be scheduling our time together for years to come. BUT, it is definitely heavy on the sweet and light on the bitter.  We have been enjoying reminiscing over the fun we have had over the past seven years, and we are excited for the next chapter of our life, as crazy as it will be.

We were up at UW yesterday for a non-stress test.  I sucked down a smoothie from Jamba Juice on the drive up (I crave strawberry banana smoothies every day and I go through GREAT lengths to find good ones), so Gavin was out of the non-stress test in the minimum time.  He gets pretty wild after our smoothie binges!  So they were able to see his heart accelerate numerous times.  It still looks awesome.  We met with our medical team again so I could get educated on the prep for the c-section and I also signed the release forms for surgery.  Ryan, of course, wanted to know if he could look over the curtain to see what is inside me.  Ugh!  Thankfully he was warned that he doesn't want to see that.  Phew.  So, now all we need to do in regards to the c-section is show up at 6AM on 3/11.  Well, apparently I have to shower two times and use some surgical wipes on my stomach, but other than that we just need to show up.

In regards to monitoring the G Man, we have our last ultrasound on this coming Monday. We will also have our weekly non-stress test and a meeting with the medical team the same day.  The Monday after that we will have our last non-tress test and meeting with the medical team...then it will be 3/11.  So we only have two more appointments up in Seattle.  Time is definitely flying by.  We are both getting excited to get him out in the world so that he can get on the road to recovery.

Speaking of road to recovery, baby Hayden was sent home this past Saturday!  It has been so nice to have a mom that has gone through a similar situation to talk to before Gavin is born.  I have a good idea of what to expect thanks to our conversations.  Hayden is definitely a little miracle baby.  Hopefully Gavin has picked up some pointers so we can get him home in record time also.  Spring and the Foothills Trail are calling him!

On another fun note, it turns out that Gavin is going to be having the same birthday as my cousin Joey's daughter, as long as I don't go into labor early. The strange part of this is that Joey and I have the same birthday also.  Sort of eerie!  Gavin will also have the same birthday as his fellow fashionista and play date buddy, Jackson St. John!  It seems as if 3/11/13 is a lucky day to have a baby.  :)

Hope everybody is enjoying the longer days!  We have seen a few trees starting to bloom around Orting.  I feel like it is a great time of the year for a new life to be brought into the world.

Until next time!

Carly, Ryan and Gavin

A Little Glimpse

About three weeks ago I congratulated the Hoskin's family in our blog because their son, Hayden, had been born with an omphalocele, and he was doing so great.  Hayden's mom, Kelsea, and I have been in pretty regular contact over the past month, which has been so great because I have gotten a good idea of what to expect with our hospital stay, and I also know that I need to get a nice hands free pumping bra so that I can email all of you updates while pumping.  Maybe a little too much information, but it gives me a good laugh.  This will be a whole new level of multi-tasking for me!  Anyhow, Hayden has done so great.  He has required very little breathing assistance and is now eating away.  While Gavin appears to look nothing like me at this point, I am hoping that he has at least gotten the DeVries' love of food so that he can eat heartily as soon as possible, and possibly do at least half as great as Hayden has!

The point of this post is to share with you the story of Hayden that was captured by local news in St. Louis.  Hayden is quite the local celebrity!  You don't get to see much of him, but I can tell you that Hayden is an adorable little baby.  Also, the news segment does give you a good idea of what Ryan and I will be experiencing.  I feel like the reporter does a great job of not making this sound like our kids are zombies, or horribly weird, which I have seen in the past unfortunately.  And, just so you know, Gavin and Hayden won't have a sack outside of their body for a year.  The membrane will grow skin over it and be compressed flat before our kids have surgery later on down the road.  I am hoping that Gavin has a quick turn around time for this since his stomach is growing at a non O baby rate!  But, again, we will have to see what happens when he arrives.  Also, judging by what I have seen of Hayden's omphalocele, I think it is a pretty similar size to Gavin's.  BUT, this is my very non-expert and untrained opinion based on nothing but what I have seen in our ultrasounds and on Hayden's ultrasound photos.  So, take that with a large grain of salt!

Here is a link to Hayden's breakout news story if you are interested in watching it:

http://fox2now.com/2013/02/07/baby-born-with-organs-on-outside/#ooid=IwNzE3OTorA7oREm7TOOXDJkHvgv2UhT

So, this is a little glimpse inside what Ryan and I will be experiencing in about 4 weeks.  Maybe it answers some questions and gives everybody a clearer picture of how things are going to go for us.

Two more weeks of non-stress testing, then another ultrasound on the 25th!  We are trucking along!  Judging by Gavin's movements, I think he is excited to get out and meet you all.

Thanks for reading!

Carly, Ryan and Gavin

3-11-13

Back from Seattle!  It was a long day, as promised.  5 hours of appointments.  Yikes!  Not to mention the UW cafeteria is nothing to write home about.

The omphalocele is still there, but that is no surprise at all!  Gavin's stomach finally snuck into the omphalocele.  Not what we wanted to happen, but Dr. Jolley suspected that this would happen at some point.  This isn't ideal, but this doesn't change anything for our prognosis.  We also met with a neonatologist that had to remind us of all of the potential unknowns.  We hadn't had that conversation in a while, so it was a grim reminder of some things that could potentially go awry.  But, even he stated that he doesn't think that these scenarios are highly likely for us.  That was really the only not great news we got.  Ryan and I both like to end with the good news, so that is next.  You will find that the good news section is much longer.  We like it that way!

Okay, so Gavin has an official scheduled birthdate.  3-11-13.  Kind of a cool birthday!  I, of course, am not looking forward to waiting longer, but if it is best for him then I will survive.  Ryan, on the other hand, is completely excited that this whole ordeal will be kicked off on a Monday because he just feels that starting this on a Monday "makes more sense."  His OCD ways get the best of him almost always.  Either way we will be showing up there at 6am for the 8am c-section slot.

The ultrasound was so much fun.  We got the great news that while Gavin's abdominal cavity is measuring small, which is "normal" for O babies, it is growing at the normal rate.  So, it grew the correct amount in 4 weeks.  This is better than expected, as we were told to anticipate that the rate of growth for the abdominal cavity would start to slow down over time.  They estimate that he is already a little over 4 pounds, which is awesome.  We want him to come out at a good healthy size, and Dr. Jolley stated he appears to be a good sized baby.  We also got to see him chugging down some amniotic fluid!  Good grief, the kid can drink.  He will be a legend among legends if he ever gets into a fraternity, but given Ryan's and my lack of coolness, he is probably destined for the debate club.  Thank God.  While he was drinking away we also saw him sticking his tongue out.  From there he proceeded to have Dr. Jolley and one of the UW Fellows laughing endlessly.  Gavin appears to be very active and was caught playing the air drums on my placenta.  Ryan is famous for his love of the air drums, and will play them on anything (my legs/arms/head included), but I have to say I am not sure that even Ryan has played the air drums on a placenta.  Since the window of opportunity for Ryan to achieve this is thankfully past, I think that this is an experience that only Gavin will possess.  I have been teasing Ryan about how the DeVries' have strong genes, but I think the joke might be on me.  Not only does Gavin have Ryan's air drumming skills and inability to sit still, Gavin also appears to look just like Ryan!  The ultrasound tech got a shot of Gavin's face in 3d and I do not think that my genes stand a chance.  See for yourself:

Ryan (Ryan himself wants me to point out that this is a manly cry)

Gavin

So, I think that it is settled, and I am actually going to be bringing another Ryan into this world.  Can the world handle this?  We may just get the chance to find out.

In terms of pregnancy, everything looks great.  I do not show any signs of preterm labor.  My fluid levels are normal, I am not retaining any water, my blood pressure looks great, and I am STILL jogging on the treadmill three days a week in addition to three lighter work out days!  I do have to say that I think I got genetically lucky.  It just seems like I have my Oma's genes and will not be slowed down by pregnancy!  We are in the final stages of the nursery completion.  I will post some photos when we are done.  We are SO grateful to Gavin's future playmates, Jackson St. John and Emmett Winterfeld, for passing down tons of stylish clothing.  We have no idea what kind of clothing Gavin will be able to wear and when he will be able to wear them for the first few months, so it has been awesome to not have to purchase a ton of clothing that he may never wear.  Plus Jackson and Emmett are some stylish dudes, so Gavin will be ready to flirt with the ladies of the NICU (hopefully he is a little smoother than his dad).  Also, I had such a great baby shower on the last Saturday of January.  I ate a ton of food, and got to see so many of my friends and family that I have not seen in a while due to my crazy work/school/internship/doctor's appointment schedule.  It was a really fun day and a reminder that we have a ton of people supporting us.

Well, from here we continue to monitor Gavin.  He is still doing great with his non stress testing, which we will continue weekly.  We have one more ultrasound on February 25th, then we won't see him again until he is out in the world!  We will continue to hope that he keeps all of this positive progress up, and that he comes out with no other complications.  So far, so good.

Until next time!

Carly, Ryan and Gavin

Big Day!

Well, I am off to the gym in a few minutes, then Ryan and I will be off to our all day appointment at UW!  Keep all 3 of us in your thoughts and prayers!  I will have an update for you all within the next 48 hours.

Hard to believe we only have 31 days until we are supposed to meet this little guy and see what he is all about.  :)

Alright, I have put off the gym enough.  Off I go!

-Carly

UW Appointment Update, As Promised

We made it up to Seattle again for our appointment on Monday, but it was a close one!  Ryan jumped in the car to pick me up at work, only to find that the battery was TOTALLY dead!  Thankfully our neighbor was home to jump the car.  Thanks Greg!  We ended up only being 15 minutes late, although I have no idea how.  Especially considering Ryan was making work phone calls the entire drive, and multitasking isn't his speciality.  He was driving anywhere between 10 over and 5 under the whole way.  But it is was a good practice of patience, right?

The appointment went well.  I continue to be impressed with the care we get at UW.  It has been fantastic.  I have yet to meet a staff member that is rude or short in any way, and since we are "special" we get to meet with four to five healthcare providers every time we are there!  So, if anybody was going to encounter the rude staff member, it would be us just by sheer odds.  They really know there stuff and they go beyond the medical aspect of treatment to make sure that we are doing okay in every aspect of my life.  I even got a lecture that I am not asking for help with life after he is born enough, so I have been working on that.  Anyhow, everything is moving along just fine with the pregnancy.  I show no signs of premature labor at this point, I am not swelling, I am not gaining too much or too little weight....everything is great.  We had another non-stress test on Monday, which also went well.  He is moving and his heart is accelerating just like it should.

That is really the latest and greatest for now.  I have another non-stress test this coming Monday, then the next Monday is our big appointment in Seattle that we are really looking forward to.  Besides the lonnngggg ultrasound we will have that day, we will also meet with a neonatologist and the anesthesiologist that will talk to me about the c-section.  After this appointment we will really just be in a twice weekly monitoring stage to make sure he is doing okay.  If he isn't for some reason, out he will come.  So Ryan and I will have a bag for all three of us in the car every time we go to Seattle just in case we don't come back.  Crazy to think.  But for the sake of his lungs being as developed as possible, let's just hope that the emergency bags are not used.

I have to throw out ANOTHER thank you to our friend's, the Barton's, who have offered to be our emergency dog care-takers!  Our nurse said it would be best if we could keep the dogs local so that they are able to come home and stay with us when we come home to get a good night's sleep.  She said that this is important because they are good for our stress and health.  Music to my dog loving ears!  Thankfully, the Barton's have offered to do a lot of dog watching for us (still have some gaps to fill in, but we are working on that!) and they live right in Orting.  We plan on throwing a big Thank You BBQ when Gavin comes home to thank all of the people who have been supporting us.  We just couldn't do it alone, and everybody who has helped has made an impact on Gavin's life already by allowing us to focus on him instead of logistical things.  I can't describe the fear that I have for him at times, and it helps to have people in our lives who are so willing to take anything off our plate of stress.

I hope everybody is doing well!  I will definitely have an update if anything else happens that is noteworthy, and definitely after our big appointment on the 4th.

Carly, Ryan and Gavin

32.5 Week Update on Updates!

I have gotten a few emails and texts asking what the latest and greatest on Baby C is, so I thought I would put a quick update on the blog!

1.  We have a name!  Gavin Michael Christiansen!  I suggested Gavin months ago, and I guess it just grew on Ryan.  Ryan has been entertaining himself by coming up with G related nicknames.  G-Funk, G-Money, G-Unit....it is endless.

2.  Things are going as well as they possibly could be.  Gavin and I had our first non-stress test last Monday.  Basically, I get hooked up to a machine and I press a button every time I feel him move, and then this machine measures if his heart rate goes up when he moves like it should.  My doctor said G Money looked phenomenal, and that a lot of the time 32 weeks is too early to see such great heart acceleration.  Gavin showed definite acceleration in his heart rate every time he moved.  Dr. T also commented on how hyper he is...Yikes!  We go in tomorrow for another non stress test, as I will have them weekly until week 34, then I will have them twice weekly until we have him!

3.  We go back up to Seattle on Tuesday for another appointment, so I will have another update for everybody after that appointment.

4.  We are sort of counting down the days until February 4th.  As I have stated in the last update, that is the big day up in Seattle where we will really map out the last month of this pregnancy as much as possible.  We will schedule the C-section, meet with the surgical team so that I can get prepped for surgery and sign all of the paperwork, and we will tour the birthing center at UW.  Not to mention we will have another huge hour long ultrasound to get the best idea of what we will all be dealing with when he comes out.

5.  Pregnancy wise, nothing is going wrong.  The omphalocele has no impact on my health, so I am just carrying on like it is a normal pregnancy.  Still jogging and working out!  I can't imagine how miserable I would be if I didn't!  It really helps me sleep through all of the kicking, which is getting quite strong!  My gestational diabetes test came back great, and my blood pressure is fantastic.  So, hopefully this all stays stable and he gets to camp out in there as long as possible.

6. For expectant Moos (and anybody else interested in my uterus in regards to future pregnancies): I did get the word that I won't ever get to have a natural birth this week.  I will be having a horizontal incision on my bikini line, but I will have a vertical incision on my uterus.  I was bummed, and I had to sort of grieve the loss of the normal way we see birth for a few minutes.  But, heck, Gavin probably isn't stoked about his liver and guts being outside of his stomach cavity.  If he can get through that, then I can get over this.  And, at the end of the day, I know his safety and health is number one.  This isn't always the case if you are wondering what to expect, but it is what my medical team decided is the safest exit for him

So, other than all of this, life is continuing.  I am busy with school and the beginnings of my research on maternal-infant bonding in single patient rooms vs. open bay NICU's (sorry to bore everybody with that), we are just preparing our home for another person to live in it, and we are mourning the end of the 2012 Seahawk season.  I am also looking forward to my baby shower on Saturday!  I can't thank our friends the Winterfeld's enough for hosting it at their house and for the continued friendship and prayers for Gavin.  I am looking forward to our sons getting into all sorts of trouble over the coming years.  The innocent, non criminal type of trouble of course.

Also, a mom that was 5 weeks ahead of me in the Moos group had been kind enough to reach out and tell me what their experiences were like since she was farther along than me.  Great news: they had their baby this past Friday and he is doing beyond fantastic.  So, congrats to the Hoskins' family!  The cool thing about these babies is that their lives are really so inspirational.  Most people don't get to say that about their lives.  I can't say my life is inspirational, but I do get to be lucky enough to be the parent of such an inspirational life, and for that Ryan and I are both lucky.

Thanks again to everybody who has been checking in on us.  We appreciate your support, and Gavin sure does too.  I also need to thank my uncle, Ken, for showing me some back exercises on Christmas Eve!  I was having the WORST back pain at night.  It was awful.  I was barely sleeping at all and I felt like a raging lunatic.  Ken (a chiropractor, not a male ballerina) showed me some things that I can do and I have been sleeping almost all night ever since!  Sweet relief!!!!!!  I think Ryan is more thankful than I am.  :)

Until next time!

Carly, Ryan and Gavin