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!