Monday, December 31, 2012

Bring on 2013!

As promised Ryan and I went up to UW for an ultrasound and then a consult with the specialists to ring in the new year.  Again we were blessed with all good news.  Everything has remained stable with the omphalocele, and the baby is growing just great.  He put on a show for us during the ultrasound, again acting very much like a Christiansen boy!  He was seen doing his practice breathing, which is great news.  He is right on schedule.  The doctors also said his chest cavity remains at a the correct size, which is another indication that his lungs look great.  Along with seeing him doing his practice breathing we also saw his mouth moving.  So cool!  We met with another doctor because Dr. Jolley was on ultrasound duty today, although she did stop by to say hi.  The doctor we met with is just as hopeful as Dr. Jolley.  She said that she has never seen a baby with an omphalocele that made it to term and appeared to have no other defects not make it.  Music to our ears.  He just needs to stay put in there until March 7th!

We are also starting the process of getting set up for his arrival in January.  I start non stress testing on a weekly basis on January 14th in Puyallup, we go back to UW for a routine check up on the 21st, THEN on February 4th we have another all day ordeal up at UW!  On the 4th will have another ultrasound that will set the stage for what we will be dealing with at delivery, the beginning of the non-stress testing that will be done once a week in Seattle, AND we will meet with all of the necessary people to prepare me for the C-Section.  OH, and we will tour the birth center.  Phew.  All of that with only a half an hour for lunch!  I guess it works out as Ryan and I have a hard time saying no to our favorite teriyaki joint in the U District everytime we are up there, so a salad in the cafeteria is probably better for us!  Basically life is going to start getting really hectic for me on January 14th, as I will be having weekly and twice weekly appointments from then until he is born, and I will be going up to Seattle at least weekly.  Not to mention I start school up again on the 7th and I am trying to work as much as possible to relieve the financial strain.  It is going to be a wild couple of months.  Have I mentioned I am also pregnant and exhausted already?!  Just trying to take it a day at a time.  The good news is that tomorrow is a holiday and I have nothing on the agenda but the ever depressing removal of the Christmas decorations.  So, I am going to enjoy the down time while I have it!

Along with getting ready for his arrival on the medical side, we are also FINALLY getting the nursery going!  I have not gone into a lot of detail on this blog about our visit in Tacoma when we first got this diagnosis back in October, but it wasn't great.  We had a doctor literally ONLY talk about termination.  So, I have been a little gun shy on getting the nursery going because I just thought he wasn't going to make it for about three weeks.  In my mind I can't imagine a doctor bringing up termination over and over again unless the baby was a total gonner.  It has taken me some time to transition into the realization that we are going to have a baby coming home with us sometime in the first half of 2013!  Ryan is installing the closet organization system as I type, and the baby shower invites have been sent.  :) 

As we get closer to the date we will have more information on visting and such for those who are asking.  As of right now I will likely take visitors while I recover, and the baby will take visistors after Ryan and I get a couple of days with him.  It is going to be a little hectic while they get him stable and run tests on him, so we want some time to process it together and get a grasp on exactly what is going on.  Plus I won't be able to see him for two days, so I want some unshared time as a family!  While he is in the NICU there can only be one other person in the room besides Ryan and I, but he can take visitors.  Again, I will have more details for those who are asking as we get closer.  Also, we are looking for a solution for our dog situation!  I am hoping to find somebody who is willing to stay at our house and give Ryder his insulin at 8am and 8pm when we are at the hospital, or somebody with a fenced yard that is willing to commit to let the dogs stay with them and give Ryder his insulin every 12 hours.  I know that is a ton to ask for, but we don't have any other solution.  If anybody has any ideas please let us know.  I think I am more stressed out over the logistics of the dogs than anything right now!  I don't want to be up at the NICU only to find out that a furry member of the family didn't make it.  Ugh. 

Ryan and I have learned so much in the past two months, and while this is stressful, and I am so thankful for the appreciation we have for life.  We are looking forward getting this little guy out so that the doctors can get him on the path to coming home.  I don't think that we will every take parenting for granted after this whole experience. 

I hope that all of our friends and family have a great 2013!  I also hope that Ryan and I agree on a name soon...

Carly, Ryan and our nameless Baby C

Wednesday, December 19, 2012

Rolling Into the Third Trimester

It is true, tomorrow I will officially be in the third trimester no matter what way you slice it.  28 weeks.  Crazy to think that we only have 11 weeks until this little guy makes his debut. 

I had my appointment today with my original doctor in Puyallup.  Have I mentioned that I think he is the best doctor ever?  :)  It was nice to go in and just do normal pregnancy things.  He reminded me that I am far enough along  for our still nameless baby to be okay if I had him today.  Granted, he would need A LOT of assistance, but it is reassuring to know that we have the next 11 weeks for him to get his lungs toughened up.  Dr. T (or the Tag man as a good friend calls him) was so kind as to offer to let Ryan use his folding camping cot while we are up at the NICU.  Again, have I mentioned how awesome this doctor is?

On the baby front, he is moving so much!  Very fun.  Ryan got to feel him move around for about 15 minutes last weekend while we were watching a movie.  Pretty awesome.  They are both so fidgety.  On the mom front, ugh.  I am starting to get to a very uncomfortable point!  I wake up all night because my back is hurting or because I need to go to the bathroom.  I hate being tired.  BUT, I am still jogging!!!!!  Ha ha!  I think I can keep it up until about 32 weeks, then it is only low impact exercise for this walrus.  I will be seeing the Foothills Trail again in May.  I am also looking forward to my baby shower on January 26th!  Can't wait.  I have had some omphalocele related questions regarding what to buy the baby.  Here is the skinny: he won't be wearing regular clothes for a while.  BUT, sleep sacks, blankets, hats, mittens and socks are totally doable in the tiny sizes!  The moms in the Moos group have stated that when their babies do start wearing regular clothes that they just wear a size bigger until they have their closure surgery.  So, newborn and 0-3 months in anything that isn't a sleep sack might not be used.  Also, the moms in the group have stated that gas cards, gift certificates to restaurants by the hospital, and gift cards to starbucks are VERY helpful.  So, that is the skinny! 

I hope that all of our family and friends have a great Christmas.  I love this time of the year and can't believe we will have a 9 month old next Christmas!  I am also looking forward to seeing some of your faces over the holiday weekend.

Thanks again to all of the people who have been calling/emailing/texting to see how we are doing.  We really appreciate it and it is comforting to know we have so many people rooting for us.

Merry Christmas!

Carly, Ryan and Baby C

Monday, December 3, 2012

Follow Up Visit #1 out of Many

We made our first trek up to Seattle today for a follow up visit.  It was a long day!  Perhaps the longest the dogs have been home alone in months.  Thankfully they were alive and well when we returned, and the house was just as we left it.  So, here is the run down:

10AM: Met with Seattle Children's Hospital.  We got a tour of the NICU first.  It was a little intimidating seeing tiny babies hooked up to so many machines.  Plus I just had a heavy heart knowing that there were parents in there that were dealing with worse things than we are facing.  I can't imagine what they are going through, as this has been stressful enough.  After going to the NICU we got to go to the medical floor where our baby will be sent after he is stabilized in the NICU.  The hope is that he is only in the NICU for a week or two, as the medical floor is a more bright and friendly place.  The rooms on the medical floor actually have a bed for Ryan and I to stay on.  The bed situation while he is in the NICU is lackluster at best.  The family resource floor (where you sleep while your baby is in the NICU) has lockers, big bathrooms with showers, and some "bedrooms."  The bedrooms are QUITE small.  Since I will be recovering from surgery I will get to sleep in the tiny twin bed while Ryan revisits his Marine Corps days on the floor of the tiny bedroom.  Yikes!  Again, hopefully the baby gets transferred to a lower level of care ASAP for many reasons, including the better sleeping arrangements for us!  Other than the tiny bedroom situation, there is a place for us to do laundry, a library, a Starbucks (thank God.  I didn't want Ryan to go through withdrawals), and kitchens that we can store food in so that we aren't spending money in restaurants.  People have been asking how they can help, and bringing us meals in the hospital is one great way to help, and we will also have an account for the cafeteria that is set up to take donations.  Overall I am so impressed with Seattle Children's Hospital and I feel so lucky to have such a great place to take our son.  Ryan and I have donated money to this hospital a couple of times over the years and now that we are utilizing their services I feel like we should have done more.  They are awesome and truly a godsent for families going through a stressful time.  So if anybody is looking to be charitable, they are certainly a worthy cause!

11:30AM: Break for lunch.  Ryan takes me to the Sony store where he looks at overpriced TV's and we are hounded by salsemen to buy them.  I spend the time sweating and worrying that Ryan might actually buy a TV.  We leave TV-less and I eat.  Phew.

12:30PM: We meet with a genetic counselor at UW's Maternal and Infant Care Unit.  She reassures us that the results of the genetic testing are nothing to be concerned of and asks if we are Jewish or French Canadian.  Interesting!  We also discussed that our last test came back negative on Wednesday, so another abnormality that can be associated with omphaloceles was ruled out.  Fairly uneventful meeting otherwise.

1:30PM: Ultrasound time!  So much fun.  The baby is getting so much more baby looking.  He was moving around like crazy and even kicked the ultrasound tech.  We saw his stretched out hand and then the most amazing thing in Ryan's life happened, next to meeting me: the baby threw up a slayer.  We couldn't believe our eyes.  Ryan probably did not pay attention to the rest of the visit.  So far this baby is much more Christiansen than DeVries, other than looking incredibly cute, which I will get to in the last segment.

2:40PM:  We meet with my perinatologist, Dr. Jolley, who I love.  I ask a MILLION questions.  I can't believe how many things there are to consider in this situation.  As of right now the baby is going to be born on March 7th at 9am or 11am.  He will have his omphalocele put in a protective bag, then he will spend about an hour with us, then go to UW's NICU with Ryan, THEN come back to see me before he and Ryan head to Children's via ambulance.  Of course this all could change if he comes out needing more breathing assistance than we think he does.  Right now his lungs are shaped great, and they are of normal size.  But, just how well they work is something we won't  really know until he is out.  BUT, Dr. Jolley reassured us that it is very unusual to have a baby who appears to have nothing else going on come out and not make it.  So, really we are just going to have to wait and see how much support he will need to breath, as opposed to waiting to see if he will survive.  Of course, nothing is a guarantee, but right now there is no reason to go to the worst case scenario.  Although he will almost certainly get some form of oxygen support so that he can focus all of his energy on growing.  Right now it is all looking great.  We also got the skinny on the appropriate attire.  In the NICU we can bring blankets, socks, mits and hats.  Overall, it was a very positive visit and everybody seems very optimistic.  And, remember, they all see a LOT of omphaloceles because they are a regional referral center for several states.  The last time we met with them they had two babies with omphaloceles of comparable size at Seattle Children's that were doing awesome.  So, things are looking good.

Lastly, I was told by one of the perinatologists that our son has a cute profile.  Now, we already knew this, so no surprise.  But, to hear it from somebody who looks at babies all day for a living was pretty exciting.  So, I have posted a photo from the ultrasound today for the first reaveal of Baby C's ultra cute profile.  We think he is basically the next Zoolander, but a little manlier.


Our next appointment is on New Year's Eve!  Talk about a different way to spend New Years than what we would have been doing three years ago!  I also see my regular doctor on the 19th to see if I have diabetes, which is a routine thing to check for if you are a man and didn't know this.  Yuck!  Ryan wanted to make sure that I say thank you to everybody who has been posting on this blog and sending us prayers and support.  We both appreciate our friends and family more than we can express.  Well, let's be honest, we are kind of immature about that stuff and most of our thank you's come out as jokes.  BUT, if you know us, you know that we love you all.   

Until next time!

Carly, Ryan and Baby C

Wednesday, November 21, 2012

Week 24!

24 weeks today!

Well, here I sit, fatting out in more way than one.  I have been spending the majority of the morning coming to terms with my "running routine."  It is diminishing with every week I am pregnant.  I am still on the trail 3 days a week and getting my 3.66 route completed each time.  That being said, the meaning of completed has taken on a much slower and more painful meaning.  I am officially a walker/jogger.  Ugh.

One a less feeling sorry for myself note, I went and met with my regular doctor this morning.  For those of you who don't know, I love my doctor in Puyallup.  In a day and age where people are taking the Christ right out of Christmas, my doctor tells me he is praying for us and our baby regularly.  I love it.  He is so supportive and positive which really comes in handy right now.  I was afraid that he would be off the team when I started being monitored by specialists, but he and my perniatologist are coordinating care.  He is going to be Baby C's pediatrician, so I am thrilled he will get to tell our son all about what we went through to have him from a firsthand perspective.  Plus this means less driving to Seattle when I start the non-stress testing in 8 weeks.  I am also measuring perfect for 24 weeks, and I am smack dab on track with my goal of only gaining 30 pounds.  Please see the first paragraph to see the lengths I am going through to stick to this goal.

I think Ryan is coming around to like the name Nash.  We will see.  I can tell you that this dude is already a lady's man.  He goes crazy anytime I am in a room full of women.  I was at a bunco party last Friday and there was a girl there that was due a week after me with a little girl.  Every time she ended up at my table our baby went absolutely nuts!  Sounds like his dad after he got stationed in sunny San Diego following a dismal dating career in high school.  Scary.  To further prove my child's love of women, he will NOT move when Ryan is around! 

We got more good news this week.  Another test came back showing that Baby C has no genetic disorders.  Although, he is a carrier of a really rare genetic disorder.  Again, he does NOT have this disorder, but if he had a baby with another carrier they would run the risk of having a baby with this disorder.  The genetic counselor assured me that this is so rare it would be like finding a needle in a haystack.  I have done some very unreliable research on the internet and have read that this disorder is a little more common amongst the Jewish population.  Ryan and I are going to have have some testing done to see who is the carrier between the two of us, and also to find out who will be lighting the Minora this winter. 

I hope everybody has a great Thanksgiving.  I will be spending the day being thankful that Ryan and I are lucky enough to have a fairly uncomplicated situation with our son, relative to many omphalocele situations.  I hope everybody eats a ton of food so that I do not feel like the only fatty on the planet.

Our next appointment is on December 3rd, so I will have another update then.

Enjoy the holiday!

Carly, Ryan and Baby C

Wednesday, November 7, 2012

The last three weeks have been a wild ride.  I will try to give you all the condensed version:

Three weeks ago Ryan and I found out we are having a boy, which we are both so thrilled about.  Ryan grew up living with only women from the age of 6 to the age of 18, so I am really happy he is going to get a little buddy to pal around with.

Besides finding out we are having a boy, we also got some not so good news.  Our son has an omphalocele.  Basically most of his liver and some of his small intestine are in a protective membrane inside of his umbilical cord.  Having an omphalocele is associated with a higher likelihood of having other chromosomal abnormalities and other congenital birth defects.  One major concern is the higher likelihood of heart defects.  Well, great news: our son has passed the amnio and the fetal echo (ultrasound of the heart) with flying colors.  He has no other abnormalities that can be seen, and he even has a cute little nose as of right now.  How he got a cute small nose is beyond me!  Ryan is considering requesting a DNA test.  This kid comes from a long line of "interesting" noses.

So, what does this all mean?  It means I am going to be pretty heavily monitored by specialists at UW to make sure that he is growing.  I will be being monitored by a specialist up at UW on a monthly basis until around 36 weeks, then I will be in there weekly.  The goal is to have a c-section when I am at 39 weeks, so right around March 7th.  They want him to cook in there as long as possible so that his lungs have plenty of time to develop.  Babies that have an omphalocele usually have a small stomach cavity, so there is a risk of his lungs not developing right.  So, I will deliver at UW, then the baby and Ryan will be taken to Seattle Children's Hospital by ambulance while I do jumping jacks and sprints to show the medical staff that I am ready to be wheeled over there ASAP.  My doctor says two days.  I think I can get over there in one.  Either way I am not stoked about this, but luckily this little guy has an awesome dad that is more than willing to be hands on.  And hands on he shall be!  Plus Seattle Children's Hospital is extremely experienced with O babies, so I know he will be getting the best care around.

There are a lot of things we just won't know until this little guy makes his debut.  If he doesn't have any other issues the surgeon we met with said he should be in the hospital from 1-3 months.  The plan is to do a conservative treatment that involves keeping a solution on the membrane and applying some pressure with bandages.  Eventually it all goes back in with the small amount of pressure, and after approximately 8 months he will go in for surgery to have his abdominal wall closed, and he will be in the hospital for about another 10 days.  This is the plan as of now, but it is all subject to change when we meet him and see what he is capable of.  I need him to come out screaming Johnny Rotten style!

Obviously this situation is going to be logistically and financially challenging for us.  We live about an hour away from the Children's Hospital with no traffic.  And there is always traffic.  Also, life doesn't stop around us.  Grass still grows, work still beckons, diabetic dogs still need insulin, and mortgages still need to be paid.  I have faith that Ryan and I will make this work.  He is a former United States Marine for crying outloud!  But I am not fooling myself into thinking this isn't going to be very challenging.  So, keep us in your thoughts and prayers.  We are all three going to need them.  And the dogs too!

I will post updates to this blog so that everybody can stay in the loop if they choose.  I hope that people turn to this blog for information rather than 3rd, 4th, 5th and 6th parties.  Or just email us.  Also, please do not use any photos off of this site for your own use.  I am working on getting this site licensed so that using our photos is prohibited.  AND, lastly, I know a lot of people like Facebook for such things, but we are choosing to not use Facebook for a platform at this time.  This blog is only passed around to our family and friends, or those who are searching for information on omphaloceles. 

By the way, our child is still nameless!  I am pushing for Nash because it means adventure.  How appropriate!  Just thought I would also use this blog to get my name agenda out there because Ryan thinks it is "too trendy."  Nash Micheal Christiansen.  I think it has a nice ring to it......try it with a southern accent....

Untill our next update,

Carly, Ryan and Baby C