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