Thursday, June 26, 2014

Baby Shower Fun and 33 Weeks!

This past Saturday we got to celebrate Abby Wren's upcoming arrival with family and friends at the most beautiful baby shower! Our friends Tina and Amanda put so much thought and love (and work, sheesh!) into every little bit of the shower, I was completely blown away.  Thank you both so so much!  It reminded me just how blessed we are to have these particular people in our lives at this particular moment - God HAS been looking out for us.  I really had a wonderful time and it was so nice to get to do a normal, happy pregnancy thing (I had thought I would cry through the whole party, but with the exception of two teary moments, I made it...until I got home).  Thank you to everyone who played a part in making this day so special, I appreciate it more than I can express.

In addition, some friends who couldn't make it on Saturday took me out for lunch on Tuesday.  They are a hilarious group of ladies and I'm thrilled I was able to spend time with them even though scheduling hadn't worked out over the weekend.

Here are just a couple of pictures from Saturday's shower - look at all of the sweet little bird details!

This banner is now hanging in Abby's room!
Jameson and me as babies, with just a few of the great decorations/details!
We were overwhelmed by everyone's generosity!
Tina, Me, Mom, and Amanda - Thank you so much, ladies!


33 Week Update!

In addition to the shower, we've had a lot going on this week!  My mom flew back out after a brief stint back home in California, and my aunt Luanne, cousin Adri, and little cousin Ellie flew up from Florida!  We got to spend a lot of time hanging out, catching up, and going through itty bitty baby clothes.  Ellie was super helpful at the shower, carrying tissue paper from the gift bags to the trash bag (so cute)!  She was very interested in meeting baby Abby, and seemed unimpressed that she'd decided to stay hidden in my belly, haha.  She also made sure I was very familiar with how to buckle and unbuckle all of Abby's gear.  Thanks, Ellie!  We don't get to see each other as often as we'd like, and having them come visit was really wonderful.   

Me and Ellie
We also had our first appointment with our new doctors at Miami Valley Hospital on Monday.  They've been really nice so far and seem well acquainted with everything that's been going on.  It's a little weird not seeing Dr. Wenckus anymore, but I know this change is for the best.  We did another ultrasound to monitor Abby's growth, and it looks like most of that growth is happening in her cheeks! So adorably chubby! Oh, and they said that she has hair (isn't it crazy what they can see in ultrasounds?).  I said that she must get that from her daddy as I was a bald, bald baby.  Based on her measurements, they're estimating that she's about 4.5 pounds, which is right on track for where she should be at 33 weeks.  Right now there is no plan to try to deliver her early, and it looks like we'll only need to do a C-Section if things are looking iffy further down the road.  So, we'll wait until Abby decides it's time to arrive! 

Not the best picture, as she wouldn't get her hands out of her face,
but you can kind of see how chubby her cheeks have gotten!

I'm still physically feeling well, and am pretty much back to where my energy levels were before our hospital stay.  Emotionally...well...remember how I said that my emotions had been all over the place?  Well, I've gone from from last week's "wanting to know everything" phase to this week's "I don't want to think about surgeries or syndromes again until after she's born" phase.  I'll be honest, I've been battling a lot of negative feelings, and it helps to focus on anything other than what we're hearing at doctors appointments.  Sometimes I have to remind myself that we are having a baby, not a medical case.  I'm enjoying organizing all of Abby's stuff, and am trying to keep my mind on things like onesies and diapers, as opposed to cranial sutures.

That's it for now, I think!  We'll have doctor appointments again at 35 and 37 weeks - at which point I will technically be full-term!  Only a few more weeks to go...

The belly! (and a squinty Jameson, haha)

Monday, June 16, 2014

32 Weeks!

We're still doing well.  Physically, I'm feeling good and there has been no new excitement.  Every week feels like a little victory now, and there are really only a few more to go!




Other Celebrations:

In all of the craziness I never got to talk about our trip to Nashville for my dad's 60th birthday!  We had a really great time exploring "Music City" and even took a trip to the Grand Ole Opry.  I loved getting to hang out with my family and celebrate my sweet and wonderful poppa!

The whole familia at Nashville's Parthenon replica
My lovely parents at the Grand Ole Opry

We also celebrated Father's Day yesterday, which I rather insisted Jameson take part in.  Though he doesn't really consider himself a dad yet, he has been truly amazing throughout this whole process, and I think that deserves some recognition!

necessary Father's Day selfie collage

This Past Week:

After initially thinking we wouldn't be able to, we had the chance to meet with the neurosurgeon at Dayton Children's Hospital on Friday for a consultation.  Though there are lots of questions that can't be answered until Abby arrives, he gave us a good idea of some things to anticipate based on the images from our fetal MRI.  It was very helpful to be able to bounce some of the questions that we've had off of him and better understand what his process is in various circumstances (i.e. the handling of syndromic vs non-syndromic cases).  He said that within a couple days of delivery we can expect him to pay us a visit to check out Abby and give us his thoughts on what her treatment will entail.  He was very kind and reassuring, and made us feel at ease with his ability to handle whatever is thrown at us!

We also met with our MFM at the base, Dr. Wenckus, and all agreed that it was time to transfer the rest of our perinatal care to the high-risk team at Miami Valley Hospital (since that is where I will be delivering).  Though I know that this makes the most sense logistically, we really love Dr. Wenckus and I am very very sad to be leaving her care.  I will meet with our new doctors over at Miami Valley in the next couple of weeks.

Emotionally, I'm not going to lie, I'm kind of all over the place (thanks, pregnancy!).  There is simply so much that is unknown right now and I am a person that prefers to (over)prepare myself for basically everything.  I like to do lots of research, and talk to people in similar situations, and attempt to take in ALL OF THE INFORMATION.  However, due to the timing of things, there is a lot we can't prepare ourselves for, and that is sometimes hard for me to deal with.

I actually wrote a very long paragraph here about some of the other frustrations I've had throughout this experience, but ended up deleting it because I realized they just didn't matter.  I just need to focus on the fact that God is blessing us with a baby girl.  There will be some extra hurdles to jump when she arrives, but we will tackle whatever she brings along with her because that's what you do as parents, right?  We aren't the first people to worry about our child, and we certainly won't be the last.  That said, I do think this experience might be easier to navigate if she were here already and we were going through it with her.  It would be nice to have a sweet squishy face to give kisses to in the midst of all this uncertainty.

But until then, I will continue to enjoy Abby's daily ninja dance parties (watch the ribs, child).   

Friday, June 13, 2014

What is Craniosynostosis?

Though I touched on it a bit in the "The Next Bump" post, I've received a lot of questions about craniosynostosis over the last few weeks, so I thought I'd go into a little more detail about what the doctors have told us is going on with our Aberdeen.  Now, I am by no means an expert, but I've been trying to gather as much info as I can.  So, other than a really long word, what is craniosynostosis?

The human skull is separated into several plates with openings (sutures) between them.  These sutures are made up of fibrous tissue that eventually fuses into bone later in life.  These openings allow the baby's skull to adjust to the birth canal during delivery and provide space for the baby's rapidly growing brain.  Some of these sutures naturally fuse into bone in the first year of life, while others stay open for many years.  When the sutures fuse into bone too early, you have what is called craniosynostosis.  The brain continues to grow, but causes the skull to take on an atypical shape that varies based on which sutures have closed.  Premature fusion can also cause increased pressure inside of the head which needs to be corrected with surgery.  You can see in the image below the various shapes the skull can take when each of the sutures fuse:


Craniosynostosis on its own is not a terribly rare finding in infants.  The statistics I've run into vary a bit, but approximately 1 in every 2,000 babies has some form of craniosynostosis.  80-90% of these cases are isolated, meaning the only presenting abnormality is the suture fusion and resulting skull shape.  Most of these cases only involve the fusion of one suture (i.e. just the sagittal, one coronal, etc) .  This type of craniosynostosis usually only requires skull surgery to open the suture back up and allow for the brain to expand normally.  There isn't a lot of information out there on why isolated craniosynostosis occurs.

The other 10-20% of craniosynostosis cases are syndromic, meaning there is a genetic syndrome at play as well as the suture fusion (e.g. Crouzons, Apert, Pfeiffer, Saethre-Chotzen, etc...). When there are multiple sutures that have fused prematurely, it is likely a case of syndromic craniosynostosis.  These syndromes vary widely in presentation and implication.  Most of them have distinct physical characteristics, but while some syndromes have potentially no effect on development or lifespan, others have many.  Most craniosynostosis syndromes are considered autosomal dominant (only one parent has to be a carrier for them to present themselves in a child), but can also occur spontaneously (with no family history).  Syndromic cases often require multiple surgeries (which are generally started earlier than non-syndromic cases) in order to relieve intracranial pressure, as well as remedy some of the other presenting issues dependent on that syndrome.  Depending on the type and severity of the syndrome, additional therapies may be necessary to assist in development.

There are a couple of different kinds of surgery that are done to correct craniosynostosis.  When the fusion is detected early enough and there aren't multiple sutures involved, an endoscopic procedure can be performed.  This is a less invasive surgery that is done between 3-6 months of age and requires the use of a helmet following surgery to ensure that the skull reforms properly.  Once a baby has passed the 6 month mark, or in more complex cases, a surgery called CVR (cranial/calvarial vault remodeling) is done.  Both are for the purpose of reopening the fused suture(s) to allow for brain growth.

This video from Boston Children's Hospital gives a basic explanation of craniosynostosis and the surgeries done.  For more information, I recommend checking out http://cappskids.org and http://www.ccakids.org



Now, for our Aberdeen:

Based on our ultrasounds and the fetal MRI, we are looking at the fusion of 3 sutures (both coronal sutures and the sagittal suture).  This, and a growing list of other markers (shortened limbs, pyelectasis, ventriculomegaly, etc...), indicate that she probably has syndromic craniosynostosis.  The only way to diagnose these syndromes in-utero is through amniocentesis.  There are some risks involved with invasive tests like amniocentesis, so (like we did back when we were talking about Down Syndrome) we opted to forego a prenatal diagnosis.  As a result, we do not know which syndrome (if any) Abby will have.  After Abby is born, we will meet with the geneticist from Dayton Children's Hospital in order to carry out the tests necessary to make a diagnosis and formulate a treatment plan.  Like other conditions, there is a spectrum involved with the symptoms of syndromic craniosynostosis.  Even with a diagnosis, we really won't know what Abby's life will be like, but hopefully we'll be able to give her the best start we can!

We've still got a lot of learning to do, but hopefully that provides a clearer idea of where we are at this point in our journey!

Monday, June 9, 2014

31 Weeks!

We made it!


Since a week ago we weren't sure that we'd make it here, we dub this a day of celebration!

We've been home for a couple of days now and we're doing well! I'm still very tired and am having to limit my activities, lest I overdo it, but overall it feels great to be home.  My mom has still been here taking care of us (and making lots of delicious food), for which I am eternally grateful.  

We were so touched by the outpouring of love we received over the last week.  Thanks to everyone for the prayers and well-wishes. We have so many wonderful people in our lives, and are thankful for the amazing community into which we will welcome our baby girl.

Now that we've passed week 30, we're in the last quarter of our original pregnancy timeline. Hopefully we can convince little miss Abby to stay put for just a few more weeks! Here's a look back at weeks 21 through 29...



Tuesday, June 3, 2014

Bumpity Bump Bump

Well, at about 6pm today (exactly 30 weeks) I started having a fair amount of bleeding, so we headed immediately to the base hospital to get checked out.  They could not determine the cause of the bleeding, and were displeased enough with what they saw, that they transferred us to Miami Valley Hospital downtown.  We've been admitted to the PICU and are being monitored/treated for preterm labor.  They seem very happy with how miss Abby is doing, but less happy with the number of contractions I'm having after being on magnesium for a couple hours.  It's still too early to tell for sure, but the doctor seems to think our little bird may be making an early appearance. If you could keep us in your prayers, we'd really appreciate it.

Update June 3 (8:30am): Abby's heart rate is looking good, the bleeding seems to be letting up, and my contractions went from every 2-3 minutes to every 20 overnight.  I've had some weakness/nausea this morning and my blood pressure is pretty low, but otherwise we're hanging in there.  They're going to get us in for an ultrasound sometime today, but it looks like we'll at least be here the rest of the week.

Update June 3 (11:15am): Got in for our ultrasound, but they were unable to determine a cause for the bleeding/contractions, but explained that ultrasound is not a great method for identifying possible placenta issues.  Found a possible anomaly with Abby's heart, but don't think it's cause for concern.  I've been a little dizzy/woozy today and had some nausea problems this morning, but am hanging in there.

Update June 3 (2:30pm): As the bleeding and contractions have essentially stopped, and there's been no cervical progress, it looks as though they will be taking me off of the magnesium tonight after our 2nd dose of steroids (to jump start Abby's brain and lung development if she does come early).   The magnesium has made me really dizzy and hot, so I'm looking forward to possibly being off of it!. They've also let me start eating a clear diet, yay Popsicles!  They told us that we'd need to stay here for 72 hours after the bleeding stopped - I'm not sure when the countdown started, but we'll be here most of the week.

       Other related but sort of unrelated news: Jameson has been talking to our MFM at Wright-Patt through all of this and it looks like I passed my 3-hour glucose test, so I don't have gestational diabetes, yay! We heard the results of the fetal MRI and they point heavily toward Abby having a syndrome paired with her craniosynostosis. We still won't know which until after she's born, but it's something we can at least try to prepare for.  Based on this information, I now know that I will be delivering here at Miami Valley as opposed to the base when the time comes.

        Thank you all for your love and prayers, we appreciate it so so much.

Update June 4 (9:15am) After taking me off the magnesium last night, I was moved from the PICU to the normal maternity wing for the evening, in hopes that I would be there for the remainder of our stay.  It was nice to take a shower and sleep without being hooked up to anything.  This morning the contractions started back up again though, so it's back to the PICU we go.  They aren't painful, but were happening every 3-5 minutes.  They've started me back on the magnesium to slow them down.  We should be going down for a fetal echo at some point today to check out Abby's heart in more detail.

Update June 4 (2:00pm) Contractions have subsided, so they've taken me back off of the magnesium and are letting me eat normal food.  The pediatric cardiologist and sonographer came by to do a fetal echo, but seemed to think that if there were any anomalies present, they shouldn't interfere with Abby's heart function. They mostly seemed so excited by the clarity of the images they could get on their fancy new machine, that I was having trouble following what was actually going on with our child.  Sounds as though they will want to recheck her heart post-delivery, but for now things look ok.  I'm still having some occasional bleeding, but nothing like what was happening when we came in Monday night.  Thank you all for your continued prayers!

Update June 5 (10:30am) Things have calmed down for the most part.  The doctors seem to think that since the bleeding is minimal, and certainly not at a level that would be precarious for me or Abby, that we may be able to go home in the next few days, but they're being cautious.  The contractions I've had did not progress labor in any way, which is also promising.  My mom came up to help take care of the three of us, and I've been out of the PICU since yesterday afternoon - hopefully the excitement has passed.

Update June 6 (7:30am) No new excitement, so it looks like they're going to let us go home today!  They are no longer worried about labor progressing and I'll just have to take it easy to keep any residual bleeding down.   Thank you again for all of the thoughts and prayers, we are so appreciative and look forward to going home!

Update June 7 (9:00am) We're now home and well-rested! We are happy to get back into our normal routine and are scheduled to meet with our MFM and the Dayton Children's neurosurgeon on Friday.  I guess we'll see what the plan is from there. Thankful that God got us home safely and that Abby will be staying put for a little while longer!