~36 hours later

We're on our second full day here at Cincinnati Children's and Aberdeen is doing really well. They've been running every test imagineable, slowly weaning her off of machines, started her on an oral medication rather than an IV for her heart, and have been working on a few different feeding methods. We're just now getting to hold her, which makes all of us so much happier. We are so thankful that they're taking such good care of our little girl. Thank you all for your prayers.

Update/Prayer Request

I'll explain more later, but basically since the second Abby was born, her craniosynostosis (and everything else we'd already been concerned about) was put on the back-burner because of a much more serious heart issue we were totally unprepared for - hypertrophic cardiomyopathy. Basically, the muscles of her heart are too thick and the passages are too narrow, so it's working extra hard all the time and causes excess fluid to back up into her lungs. She's doing better than she initially was, but she's being transferred from the MVH NICU to the Cardiac Intensive Care Unit at Cincinnati Children's Hospital.  It is not something that can be surgically corrected (the MVH cardiologist described it as being "out of our control"), so they're hoping the specialty team in Cincy has a better idea of how to manage it. I was discharged today and we're following her down there. We're on day-to-day status right now and appreciate your continued prayers. 

Introducing Aberdeen Wren Locklear

Abby arrived at 9:30pm on Sunday August 10, 2014 - only 1 day before her estimated due date! She's 7lbs 6oz, 19.5in long, and has a bunch of fuzzy brown hair.  It's been a whirlwind couple of days and we've got a long road ahead of us, but we're so happy she's finally here. She has had some complications even beyond what we'd expected, but is improving little bits at a time. Will follow up with details later on, but for now we'd appreciate any prayers you can spare for our sweet little Aberdeen.

39 Weeks!

The puppies wanted to be included :)

Yep, we're still here! Despite being told by half a dozen doctors that we wouldn't make it to our due date next week (that'd be Monday August 11th for those who may have forgotten), I suspect miss Abby has plans of her own. She's going to turn out to be stubborn like her mom. I imagine her in there hearing the predictions and thinking, "heh heh, we'll see about that, suckers!" 

I would prefer that she decide to arrive sooner rather than later as I am quite uncomfortable these days. QUITE. I am also not sleeping much at all. I fully anticipated being sleep-deprived once she'd arrived, but was not prepared to already be in zombie-mode. Mostly I'm just a big grump. Grumpy grump grump. However, there is a full moon on Sunday the 10th, which is supposed to mean something, so hopefully it does its job.

Our MFM appointment today just sort of showed that we're on track to keep on keepin' on. The blanket policy at Miami Valley is to induce at 41 weeks, but hopefully we'll be done before then!

My plan until then is to eat all the cheesecake, because it's delicious.

38 Weeks!

As far as updates go, I don't have very much to report this week. Our MFM appointment was routine (even, dare I say, boring ;-)), and we're just taking things day by day. I've had lots of false labor contractions, but nothing to send us running to the hospital yet.

I really wasn't sure what kind of response to expect after last week's very raw post, and I want to extend a heartfelt thank you to everyone for the uplifting comments, texts, and emails. Reading through them was a very emotional experience, and I was truly touched by all of the support we received. Thank you all so so much.

This week I'm feeling more confident in my ability to be the mother that Aberdeen needs. I know that a lot of the fear and anxiety I've felt is closely tied to so much still being unknown. When we're only aware of a possibility of what we could be facing, it's easy for a worrier like me to fill in the blanks with what-ifs and worst-case scenarios. When I actually take a second to step back and look at the whole picture, instead of all the itty-bitty details and medical jargon, I feel much more assured that God has prepared us for whatever is about to come. 

These verses from Philippians were shared with me this week by a couple of incredibly strong ladies who've faced their fair share of challenges as mothers in the last few years. They really spoke to me and have been something I've appreciated being able to turn my focus toward:

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6-7 NIV)

I can do all this through him who gives me strength. (Philippians 4:13 NIV)

37 Weeks and a little honesty...

37 Weeks!  Call it whatever you want - term, early-term, full-term, whatever - we made it! 

We had our last growth ultrasound yesterday, and they're estimating that Abby is currently 6lbs 9oz (which puts her on track to be almost 8lbs at our August 11th due date). We were able to see her taking practice breaths and received confirmation that her tailbone and feet are very much up in my ribs. Oof. Not much else has changed as far as they can tell (there's only so much you can see on an ultrasound this late in the game), and the plan is to wait until I go into labor on my own - which they predict will be shortly before my due date (fingers crossed). We'll have appointments every week from here on out.

We had a fun weekend. The cube shelf we had in the nursery ended up being inadequate for our book storage needs, so we scrapped that idea and headed down to the Ikea in Cincinnati for something to replace it. Oh my goodness. Neither Jameson nor I could recall ever having been in an Ikea, and we were not prepared. That place is something. Amazing and efficient, but also bonkers. We had fun though, and ended up with a bookshelf we're really happy with. 

So much better!

And now, for some cathartic venting...

Disclaimer: I journaled this on Thursday with no intention of posting it.  I'm not particularly proud of it, as it's not all that positive, but I really needed to get it out. I planned on keeping it to myself, as I didn't think people would want to read a bunch of doom and gloom, but after re-reading it decided that maybe this is exactly what other people need to know about this point in our journey - that it's difficult and there are days when I just want to scream and cry and tear my hair out; days when I feel hopeful and positive and days when I do not. It's long-winded, but an honest representation of a lot of what has been on my mind. So here it goes...
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Thursday July 17, 2014

As we draw closer to our due date, my anxiety levels are steadily rising.  While I am excited to finally get there, I am also extremely nervous.  Some of my concerns are related to actual labor (her head getting stuck, bleeding problems after our 30-week scare, etc…), but most of them actually have to do with what happens post-labor, once we finally meet our daughter.  

I have been hesitant to talk about the syndrome that the doctors have suggested Abby may have (Pfeiffer Syndrome) - partially because we haven’t been definitively told that that’s what it is, and partially because (after doing some research) it’s a pretty daunting prospect to be facing.  When we thought we were looking at Down Syndrome earlier in this pregnancy, I found a lot of peace in the stories from parents with kids with that particular condition.  Such has not been the case with Pfeiffer’s.  The more I learn about it, the more terrifying it seems.  The stories I’ve run across from parents talk about their kids having to undergo multiple surgeries to fix the craniosynostosis, mid-face underdevelopment, and shallow eye sockets associated with Pfeiffer’s - we’re not just talking about one or two surgeries here, but DOZENS before they reach adolescence.  They talk about their kids having difficulty breathing, progressively losing their hearing and/or sight, and having serious cognitive delays.  They also talk about the challenges of having to live in a horribly judgmental world, one in which their child’s syndrome is rarely heard-of, much less understood.  I want to smack my 20-week pregnant self for crying in fear over the possibility of Down Syndrome or even isolated craniosynostosis.  I would take either diagnosis in a heartbeat at this point.  (Jameson made a good point that we needed to go through those emotions then so we would be more prepared for what we’re actually looking at now). Occasionally I’ll even run across an article describing some forms of Pfeiffer Syndrome as being “incompatible with life” and I’ll completely lose it.  This pregnancy has been hard, sometimes very hard, but I can think of nothing harder than finally getting to meet our baby bird and then learning that we’ll lose her.  I already love her, I can’t imagine the pain of her being taken away from us.

As much as I do love Abby, I’m also a little afraid of her.  I’m afraid of what her condition will require.  One of the main reasons I was hesitant to have kids for so long was because I feared having a child with a complicated medical issue that would require us to all but live at the hospital - an “Extreme Makeover: Home Edition” kid.  No joke.  And here we are, facing that very possibility.  It makes me crazy to read articles about Pfeiffer Syndrome that discuss whether or not those afflicted will be able to have “normal” lives.  Forget normal, I don’t care about normal anymore, I don’t really even have the expectation of her living a “healthy” life, all I want right now is for her to be happy.  In fact, I think that was one of the only things I ever prayed for before getting pregnant or shortly after we discovered we were expecting: I just wanted our child to live a joyful life.  I still pray that she will.  

I also worry a lot about my ability to deal with others in relation to Abby’s condition.  I already dread people asking about my pregnancy, and cringe when well-meaning people start giving me advice based on their own experiences with their “typical” children.  What am I going to do once I have an atypical baby that random people want to come coo over?  If she does have Pfeiffer Syndrome, or something like it, her physical differences will be pretty noticeable.  How am I supposed to navigate the questioning looks and awkward comments?  I think I’d rather people be aware and informed, rather than ignorant and judgmental, but at the same time, I’ve never really been good at talking to people.  I’d rather just smile, nod, and deal with whatever I’m struggling with in private.  I worry about having to spend the rest of her life explaining her to people.  Explaining that yes, she’s different, but that’s ok, she’s exactly who she is supposed to be.  Sometimes when I start to feel overwhelmed by this prospect, I worry that it is because I’m really afraid about how I will react to Abby.  Maybe I’m the one that’s scared of how different she’ll look, and that it will somehow affect my feelings toward her.  What a horrible, superficial thing to be concerned over.  

Another thing that I’ve struggled with in conversations with others is the suggestion that it could turn out that nothing is wrong.  I understand that people are trying to be helpful and positive, but it is actually one of the more difficult sentiments to cope with that I’ve run into lately.  Is it possible that everything could turn out to have been a huge misunderstanding?  I guess.  I’d like to believe that miracles still happen, but in all likelihood, there will be some serious obstacles for us to face.  I find it much more helpful to look at the situation this way:  It is what it is and it will be ok.  It will be challenging, but it will be ok.  Anything other than that actually makes me more stressed out instead of less.

As the extent of Abby’s medical condition looms ahead of us, it has given me a healthy dose of perspective on becoming a parent.  There are quite a few things that might normally concern a new mom that aren’t even on my radar.  For instance,  I am not worried about having an intervention-free labor or it being in any way an “ideal” experience.  I am not worried about my post-delivery recovery or getting my pre-pregnancy body back.  I am not worried about changing messy diapers or getting up in the middle of the night.  I am not worried about my career or maintaining any semblance of a life outside of being a mom.  I’m really just not concerned with any of that right now.  All I care about is our daughter's health and giving Aberdeen a life that is full of love.  No matter what I am going through, she is going to need be loved and supported.  This means continuing to nurture my relationship with Jameson, and even more importantly, my relationship with God.  I am not always good about putting God first, but if I am going to be the best mom I can be, I will need to figure out how, as I’m pretty sure that His help is the only thing that is going to get me through this.

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One last thing: Jameson's middle brother, Justin, painted this piece that we had framed for Abby's room.  I picked it up from the frame-shop on Friday and it reminded me that sometimes the things that seem to hold us down in life turn out to ultimately be what lifts us up.  I think that when I have days like Thursday, I should go sit in Abby's room, stare at this for a while, and focus on the fact that whatever it is, it will be ok.

The perfecting finishing touch for our baby bird's room.

36 Weeks!

Less than a month to go!!! We're ready, the house is ready...just waiting for little miss Aberdeen to be ready!  This has been an interesting week: I started having acid reflux for the first time this pregnancy (pretty glad it held off this long!) and the Braxton-Hicks contractions have started picking up again.  They feel pretty weird these days with her taking up so much space in there.  We've also started getting some pretty classic "Alien" action with my stomach visibly jumping around.  Whenever I try to show Jameson or get a video though, she immediately stops.  This kid likes freeze tag apparently.

Late last week we met with one of the neonatologists who will be overseeing Abby's care immediately after birth. He was very kind and gave us an idea of what we can expect during our stay.  So far we know that they will definitely be doing an echocardiogram to take a better look at her heart, a kidney ultrasound (since they prefer for pyelectasis to have resolved itself by this point), the neurosurgeon will be coming over from Dayton Children's Hospital to do his assessment of her head and decide what additional imaging they'll need to do before any surgeries take place, and we'll schedule a meeting with the Dayton Children's geneticist in order to carry out the tests they'll need to do to make an official diagnosis. That being said, as long as she's eating and breathing well, she should room-in with me and we should be able to take her home 48-72 hours after delivery (like most babies).  If not, she'll spend some time in the NICU.

It seems like so much for such a little person. I'm admittedly overwhelmed and pretty emotional about all of it. My poor little bird.  However, I am incredibly grateful at how well organized and informed all of our care-givers have been along the way. This is where I've most been able to recognize God at work. I've questioned God a lot throughout the last few months, but not on this front. It has really helped me to trust that we're in the absolute best hands.

In other news, we were thrown another shower by the lovely ladies at Fairhaven Church. I was (again) completely blown away by the thoughtfulness and generosity of all of the people surrounding us. The shower was themed, "Once Upon a Time," and we were gifted with an array of wonderful children's books and toys. I also loved that some of the ladies brought their daughters along! They were so sweet and genuinely helpful. Thanks to all!!!

Me and Amanda

One of the themed games

Introducing the children's book theme!

My helpers :)

Last, but not least, it was my mama's birthday on Sunday!  Happy Birthday to my wonderful mom!  It may sound cliche, but these last 8+ months have made me feel so much closer to her and appreciative of all the sacrifices she made for me and my sisters throughout our lives.  I could not be more blessed to have her.