Sunday, August 31, 2014

3 Weeks Old

It's been a memorable and challenging three weeks, but we are so happy to be finally getting settled in at home.

Abby's done great at home so far. She seems pretty relaxed and is adjusting well to her new environment. She has tolerated the dogs, put up with some parental difficulties with the feeding pump, and really been a great baby through everything.  We're enjoying working with her on tummy time and attempting bottle-feeding during her 2 three-hour breaks from the feeding pump. She has some nice alert periods during the day - we love watching her big blue eyes taking in the world around her. 

While it's wonderful to have our whole family at home together, caring for Abby is quite a learning process. I think our release from the hospital has confused some people, so I want to clarify Abby's health status: nothing has really changed. She still has hypertrophic cardiomyopathy and has to take medication three times a day to relax her heart enough to keep fluid from backing up into her lungs. Things that might be no cause for concern in other babies (i.e. sounding congested or spitting up a lot), for Abby could mean a serious problem. We were also warned to keep Abby away from people/places she could contract even a cold from as it could land us back in the CICU. She still has three holes in her heart, some of which will need to be addressed surgically once she's big enough to tolerate such procedures. We will be traveling down to Cincinatti Children's on a weekly basis to reassess her status with the entire heart failure team (which includes cardiologists, dieticians, pharmacists, OT, PT, and speech). We will also start discussing skull surgery when we follow-up with neurosurgery toward the end of September. In addition, she is hooked up to the feeding tube for 18 hours a day, which makes us largely immobile until we figure things out a little better. Being home does not mean everything's been fixed, it simply means that they can't currently do anything for her at the hospital that can't be done at home.

Because of all of this, the idea of visitors is a little overwhelming right now - please be patient with us. 

We're focusing on taking things one day at a time, trying to enjoy the little things, and being thankful for our baby girl.

Thursday, August 28, 2014

We're Going Home!

That's right! Because Abby's been stable from a cardiac standpoint, and they've decided to hold off on any surgical procedures until she is a couple months old, they're sending us home tomorrow! I thought that we would be here for a lot longer, I can't believe we're going to be leaving here soon WITH our Aberdeen Wren. I will never forget how devastated I was when we had to leave Miami Valley Hospital without our baby, I don't think either Jameson or I said a word as we made the drive to Cincinnati. Honestly, it's been one of the driving reasons behind me not wanting to go home - I didn't think I could emotionally handle seeing all of her stuff in our house without having her there. The idea of her finally being there with us could not be more exciting.

Before we leave, there are still a few things that have to be taken care of. They'll do another echocardiogram to make sure everything is copacetic, and we'll figure out follow-up plans with cardiology, genetics, and neurosurgery (we did a CT scan earlier this week that showed fusion of the sagittal and right coronal sutures). We'll pick up Abby's prescriptions and get a tutorial on how to draw-up and administer them. Home-care should be meeting us back at the house to get the feeding pump set up, and will probably check back in with us regularly to make sure things are going smoothly. 

Home life will still be a little atypical for us. We'll probably be back weekly for monitoring, though we may be able to do some appointments at Dayton Children's. We've now been trained on how to use the feeding tube and pump, with the understanding that Abby will probably continue to need it until well after surgery. Though we're obviously thrilled for our little girl to leave the hospital, we're also a little trepidatious about leaving the wonderful nursing staff and having to figure stuff out on our own. Luckily, we know that we have God and an amazing network of people looking out for us. We can do this!

Sunday, August 24, 2014

2 Weeks Old

Our sweet baby girl is two weeks old today!

It's been a long couple of days trying to recover from our setbacks earlier in the week, but we're making progress.  

Fun stuff first:

Abby's grandparents and uncle came to visit last weekend and got to spend some quality time cuddling with the munchkin. It was great to see family and I know they were happy to come make sure Jameson and I were doing ok as well.

As Abby is becoming more alert during the day, we're getting to see her enjoying the world around her. She loves being held, swaddled, sucking on her pacifier, watching the mobile attached to her crib, and taking rides through the hallway in the stroller (she's "wireless" for a couple hours a day, so we're trying to get her out of the room). She hates diaper changes and being unwrapped in general, but is a really good baby overall. She makes some hilarious faces and is pretty darn adorable. 

Medical stuff:

After an additional echocardiogram on Friday to assess Abby's PDA, the cardiologist determined that it appears to be closing on its own, so they don't think they will need to perform that surgery.  However, this causes them to now believe that the reason she's struggling is because of a worsening ASD (hole between the upper chambers of her heart), which will require open heart surgery. Deciding when to do this surgery is a little complicated. They believe that closing the ASD could take a lot of the strain off her heart and body, allowing everything to work more effectively, but they generally don't do this surgery until kids are a little older/bigger because of the risks involved. Thusly, they really want to see Abby gaining weight before undergoing an operation of this scale. 

Unfortunately, because Abby's heart is working so hard, it doesn't leave a lot of energy left over for digestion. This has made eating and gaining weight a laborious process.  We've had to pretty much stop working on bottle/breast feeding because Abby's been put on a continuous feed through her NG tube (she still receives breast milk, but it goes straight into her stomach). After throwing up so much, the dieticians felt that this was the best way to get her the calories she needs to thrive - and she does seem to be tolerating it better than the intermittent feeds throughout the day, so hopefully we'll get her where she needs to be soon.

Our Abby seems to baffle nearly every doctor we've seen. I can't tell you how many times we've heard, "well, she just doesn't fit what we'd expect of someone with ______."   This is especially true with the genetics team. We really enjoy talking to them, but have been made quite aware that Abby's anomolies just don't add up to a simple answer. Basically, she may have a craniosynostosis syndrome with isolated heart problems, a heart syndrome with isolated craniosynostosis, a whole bunch of isolated findings, or something completely new. This matters because it will help inform the doctors of the care she'll need as she grows and develops. Whatever it is, she's unique!  

Us stuff:

We're hanging in there. We've pretty well moved into Abby's room, and it feels a lot like hotel living (with people coming in periodically to check Abby's vitals, run tests, etc...): we have a pull out couch/bed, a couple of drawers to store stuff, and a bathroom with a shower. We have no idea how long we'll be here, but we're making it work. Some days (like Monday/Tuesday) have been truly dreadful, but others have been manageable. We still struggle with understanding why so much has been piled on someone so little, but we may never really know.  We are enjoying hanging out with our little girl and are just trying to take each day as it comes.  We venture out to the cafeteria patio during the day to get some fresh air, but leaving the hospital is still very hard. I have my two week post-partum appointment tomorrow, which will mark the first time I'll have been home since checking into the hospital during early labor. I am excited to see Gracie and Boone (who are home from the kennel now, thanks to friends offering to watch them), but I am not looking forward to being away from Abby for most of the day. Luckily we have even more great friends who've offered to sit with her while we're gone, and we've bonded with some of the nursing staff already (they all love Abby). 

Thank you to everyone for the thoughts, prayers, cards, food, and visits. We appreciate everything so much (forgive me if I haven't responded to your texts/messages - we appreciate you too, I just sort of lose track of stuff).  Things would be a lot harder without all of your love and support. Thank you, thank you!

The feisty little thing pulled out her feeding tube a few days ago and looks pretty smug about it, I expect we'll have our hands full with her. :)

Tuesday, August 19, 2014

Three steps forward, two steps back...

It's been a rough 24 hours for Aberdeen.

Her breathing had been getting progressively labored and she was vomiting more after feeds than she had previously, so we had our nurse sit with her most of the night to get her opinion on things. She agreed that these signs were worrisome and asked that a chest X-Ray be done. The scans showed some fluid in Abby's lungs (a sign that her heart is working too hard again).  She was put back on some air support, had her IV reinserted, was started on some medication to help remove the fluid buildup, and was put back on an IV dextrose solution. After performing another echocardiogram, the heart failure team surmises that her symptoms are due to the persistent PDA and are talking about closing it surgically sometime next week (though they will be doing additional echocardiograms between now and then to determine whether surgery remains necessary). While the idea of our tiny baby having heart surgery is obviously daunting, it sounds as though fixing this problem may make a big difference in how efficiently her heart (and thusly the rest of her body) is functioning.

Jameson and I had a rough 24 hours right along with Abby.  Since she was born, we've shed a lot of tears and have been feeling as though we've been run pretty ragged. To regress after things were seeming markedly better has been defeating, and it's been really difficult trying to manage our fear for her health when it's all out of our control. Something I'm really struggling with is that I can't stand the idea of leaving her side for more than a couple minutes for fear that something devestating might happen. Obviously this hasn't been great for my mental or physical well-being. We're still trying to figure out how to exist in our new reality, and haven't struck that balance yet between taking care of ourselves and taking care of our daughter - especially when there's so little we can do for her right now. We wish things were easier for our baby girl - that she didn't have to work so hard all of the time.

She's slept most of the day today and seems much more comfortable. We have been assured that these kinds of setbacks are pretty common, but we're admittedly worn out emotionally. 

Some reflection:

Something we've thought about a lot over the past nine days is how blessed we are to have been in the right location and connected with the right people throughout this journey. We are thankful that we are currently stationed in Dayton as opposed to where we were in South Carolina, where our options for care would have been much more limited. We are thankful that we were being seen by Dr. Wenckus at the base, who noticed the craniosynostosis where other MFMs may not. We are thankful that she referred us to MVH, where Dr. McKenna was insistent that something was amiss with Abby's heart and wanted an echocardiogram performed upon birth even though more than one cardiologist thought that her heart looked ok on the ultrasounds. We are thankful that we were within an hour of one of the best Children's Hospitals in the country, that even has a specialty group for Abby's condition.  These, and a number of other things, have us trusting that God does have a plan in all of this - it isn't just coincidence. Though we are struggling with what that plan may mean for Aberdeen, we feel certain we are exactly where we're supposed to be.

Saturday, August 16, 2014

1 Week Old

I can't believe it's only been a week.

After 41 hours of labor (24 of them active), we welcomed our baby girl into this world. Because we knew she had some special circumstances, we delivered in the OR at Miami Valley Hospital (as it was directly connected to the NICU). They put her in my arms while her daddy cut her umbilical cord, and then they whisked her off to be assessed. She wasn't breathing. After intubating her, they were able to get her to take her first breaths, but neither of us would get to hear our little girl's first cries until the next day.  When my water was broken we were told that Abby had passed some meconium in the amniotic sac, so not to be surprised if she didn't make any noise at birth. Because of this, I didn't think anything of it when she was silent upon delivery. Looking back, I don't think I even really processed what the neonatologist was saying when she came in to tell me that Abby had to be intubated. Maybe I was in shock from just birthing a child, or maybe I was just focused on the fact that they had her breathing again, but either way, the news did not have the expected impact. I was just sort of ok. They were going to do some x-rays and an echocardiogram and then come talk to us.

We were taken back to a recovery room without our daughter, where we would wait for another hour and a half. This period ended with a visit from the pediatric cardiologist with devestating news. And this I definitely heard. He explained that Abby had a number of cardiac anomalies, one of which was of major concern, and that he was not sure about the prognosis. He told us, in so many words, that she might not make it through the night. 

We were taken to see her in the NICU where we held her hands and told her we loved her. They had put in an umbilical catheter so we couldn't hold her, and I couldn't even stand up to give her a kiss as I was still pretty weak. Before we were escorted back to our room, the cardiologist said that they would start her on IV meds to relax her heart, and we'd see how she did, but we were taking things hour by hour. 

Our Aberdeen exceeded expectations. Not only did she make it through the night, she responded so well to the medication that by the next morning she'd been extubated and was breathing on her own with oxygen supplementation via high flow nasal cannula. We got to hear her making little noises and were assured by the cardiologist that she could not have done better.  Praise The Lord.

We spent the next day and a half in the MVH NICU getting to watch our little bird fight the odds before we were transferred Tuesday evening to Cincinnati Children's Hospital where we would be in the care of their cardiomyopathy team.

The next couple of days were an absolute whirlwind of doctors, tests, and interventions. Ultrasounds were done of her head, heart, and kidneys. Panels were sent off for seemingly every syndrome in existence. We met with cardiologists, neurosurgeons, geneticists, ophthalmologists, and more. Labs were drawn, medications were changed, she was slowly taken off the nasal cannula since she was breathing well on her own, and her umbilical catheter was removed - making it possible for us to finally hold her whenever we wanted. Lastly, a feeding tube was inserted in place of her IV drip and we started to attempt bottle and breast feeding.  We learned that her lungs and kidneys were fine, she has at least sagittal craniosynostosis, she doesn't classically fit any known syndromes, and that her heart has a number of problems.  In addition to hypertrophic cardiomyopathy, she has an ASD and a VSD (small holes in her heart), as well as a left SVC (most people have a right SVC - Abby has both), and a moderate-severe PDA (another hole that usually closes within 2 weeks of birth). While the only one of immediate concern is the HCM, it can be controlled on medication and has the potential for improvement over time.

She was officially stable.

So stable, that on Friday evening we were moved from the cardiac intensive care unit to the cardiac step-down unit.  While she is still hooked up to a few monitoring devices, has a picc line for any additional lab work or new medication, and will continue to have her feeding tube, things are much less urgent in this unit. They don't have to check on her quite so often, and have given us the chance to try to learn what it means to be Abby's parents.

Our little fighter has made great strides in the seven days since she was born, but she still has a long way to go. There has been discussion of sending her home with the feeding tube since she is really struggling with eating (this is also how her heart medication is currently administered). While I'm thrilled she's done well enough that they think she may go home relatively soon, the idea of her having to stay on the feeding tube breaks my heart. We were prepared for lots of things to be difficult, but for some reason it never occurred to me that she might not be able to eat. We've been working with lactation consultants, occupational therapists, and speech pathologists who have all told us to just be patient and that this is not uncommon with their heart babies - their bodies are already working so hard that any additional work may just be too much for them. 

Abby's PDA closing is also a prerequisite for going home. They are going to do another echocardiogram on Thursday to reassess its status and determine if it needs to be addressed surgically. They aren't worried about it causing immediate problems, but if it doesn't look to be closing on its own, it could be troublesome down the road.

Today we were able to unhook her from one of the monitors and removed her picc line. Every day shows a little more promise and we are so in love with our little girl.

Thanks to everyone for the help, thoughts, and prayers. We are so thankful that we have been taken care of by the right people all along the way and believe that God is looking out for His special Abby Wren. 

Thursday, August 14, 2014

~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.

Tuesday, August 12, 2014

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. 

Monday, August 11, 2014

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.

Tuesday, August 5, 2014

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.