Saturday, August 30, 2014

The news we've been waiting for...

We finally heard back from the genetic test and Sammy does NOT have VLCAD. I cannot begin to tell you how relieved and happy I am! Thank you for all of your thoughts and prayers.

And today is my birthday. Best birthday present ever! I am over the moon!

Now I just hope we have an uneventful life for the next little while!

Friday, August 22, 2014

I'm an idiot.

Kevin went back to work on Wednesday which leaves me alone in my thoughts most of the day and night. It's left me a lot of time to worry about these VLCAD results, and even worse, to research it online. Libby, being the incredibly strong and amazing mother she is, gave me a pep talk the day we got the initial screening results and told me to stay off the internet. I should have listened to her. I am so mad at myself. I couldn't resist. I was looking for reassurance somehow, as if the internet can give that to me as I wait tirelessly for Sammy's results.

I'm an idiot, but I've been reading about it. A lot.

Up until recently, I was somewhat reassured that Sammy's second newborn screen came back normal. But yesterday I learned on multiple studies that a second screen for a VLCAD patient typically does come back as normal as the levels normalize. So the second screen being normal means nothing. And the fact her actual blood panel came up as slightly abnormal is worrisome to me. Big time. I don't have access to talk to the geneticist himself so all of my questions are unanswered and I'm going positively insane. He won't give us his take on the blood panel because he's waiting for the DNA test results which are more definitive. And even though we thought we'd get those results this week, we haven't.

I also know that because of the inability for a baby with VLCAD to break down very-long-chain fatty acids, commonly found in breast milk, breastfeeding could be harming her as we wait. And I'm working so, so hard at getting breastfeeding to work out for her. If she doesn't have it and I give up breastfeeding (which I'm not planning to, but I can see how someone might) and we find out she doesn't have it, we missed out on the benefits of breastfeeding. But if she does have it and has too many of the fats her body can't process, it can lead to organ failure or a metabolic crisis. It's incredibly hard to walk the line not knowing what the reality is. It's enough to make my head spin.

All of the 'normal' newborn things have me second guessing. She has reflux, irritability, some days sleeps a lot and some days doesn't sleep as much. To anyone else, they'd chalk it up as normal baby stuff. But I always go to the "Is this a sign of VLCAD?" first and foremost. It's maddening, more than anything I've ever been through in my life. Miscarriages included.

It's all I can think about and I really am worried sick. I'm having a really really hard time with it right now. I'm praying we get the results soon and they show she's 100% clear of this - not even a carrier. I guess even being a carrier can manifest symptoms in scary ways.

I'm just feeling broken watching her every move and wondering and worrying what is lurking beneath her seemingly healthy self. I can't imagine losing this little girl to a life-threatening disease like this. I haven't been able to truly enjoy this incredible experience because of this black cloud hanging above me.

I thank God Kevin will be here this weekend so I can be distracted once again. Being alone in my thoughts with access to Dr Google is clearly a bad thing!

And for those of you who may be wondering, we did get the results for the DNA test that tells us which genetic family Sammy is from and have told both of our donor families. I want to respect the families involved so that they can tell their families about it before posting here. But once I know it's okay, I will write about it.

Thanks for hearing me today and please continue to pray that her test results come soon and they are a resounding negative and this is over once and for all.



Monday, August 18, 2014

Not what I expected when I opened the door

Sammy has had some gas and reflux symptoms so while we wait to see the pedi on Tuesday, I ordered some gripe water off of Amazon to try to help her out. I knew it was out for delivery yesterday and when the mailman came to deliver it, I was eager to try it out. I had also been trying out my Sakura Bloom ring sling and have been wearing Sammy around the house. So when the doorbell rang, I happened to have her on me already and it made it really easy to get up to go to the door.

I could see through the window that the mailman had left the package and was no longer there. So I opened the front door when something came flying at me missing me by inches. YES, FLYING. And it landed on the tile entryway.

It was a baby snake. 

It took me a couple of seconds to realize what had happened. At first, I thought it was a restaurant delivery menu been tucked into the crease of our door. But menus don't start slithering toward your dining room.

Cue complete and utter freak out.

Kevin was still sleeping and I had the baby strapped to me in the sling. I didn't want to go near it, but I also couldn't let it out of my sight to somehow allow it to slither into an unknown part of the house leaving us to wonder what and where it was. I was way too vulnerable so I just started yelling for Kevin. Luckily he heard me and came running in to see this snake which had perched itself into the corner of the entry hall.  Imagine his surprise!

He wasn't sure if it was a baby rattlesnake either because they can be hard to identify when they are small. But he was able to safely get it into a plastic pitcher with a shoe and cover it so it was safely contained while we tried to identify it. If it was a rattlesnake, it meant we probably had a nest somewhere and that would be really bad!



After posting this photo to Facebook and ultimately calling a local snake guy who actually answered his phone on a Sunday morning, we identified it was a harmless Yellow Belly Racer snake. And Kevin was able to release it into a field behind out house.

We think it climbed the door to make it's way into a wreath that I have hanging that sometimes birds hang out in. Because this thing didn't slither in on the ground, it came flying in from the air!

For someone who hasn't left the house in a while except for pediatrician and OB appointments, it was quite the adventure. I'm a little nervous about going through the door for fear of what might fly at me next! You know what they say - don't mess with Texas! ;-)

And PS, the ring sling was great. Sammy slept through the whole thing!

Wednesday, August 13, 2014

Finally, the birth story with pictures

I've been so crazy busy I haven't had a chance to type up the birth story. I know that as time passes, I'll forget more and more about it so I want to get it down while I can. Here goes.

I had been dealing with mild pre-eclampsia for a week or two and finally after a L&D scare over the weekend, so my OB and MFM decided I would be delivering a week early via scheduled c-section. I got the call on Monday, July 21, 2014 to be prepared for a July 22, 7am delivery. The nurse was so sweet and ended the call with "you're going to have your baby in your arms tomorrow!" I hung up and cried tears of joy.

I made a few phone calls to my work, to the dog daycare, family, etc, to get all of my affairs in order. We dropped the dog off later that evening and Kevin and I laid in bed in awe telling one another that our lives would be forever changed the following day. We set our alarms for 3:45am because we had to arrive at the hospital at 4:45am.

I laid in bed feeling like a kid does waiting for Christmas morning - well, that times a million.  I knew that the following day would be magical and there was no way I could get a wink of sleep leading up to it. So I decided I'd go out into the family room and watch TV. We had to "wake up" (but I couldn't sleep lol) at 3:45am and I only had about four hours to kill.

I watched some guilty reality shows, some Top Chef reruns, and around 2:45am I went to the restroom only to realize my underwear was soaked. Huh? Pregnant ladies are known for having bladder accidents, but this was a lot. Then, more gushes came. It took a minute to register, but it finally hit me - my water broke.  What in the world are the odds of that just an hour before we were supposed to get up for the hospital anyway? It wasn't at all like I expected it to be. I didn't feel a pop, a large gush, I just happened to notice I was all wet and had to put it all together in my head.

I woke Kevin up and said "you'll never believe this, but my water broke. So let's get this show on the road a little earlier than planned. I'm sure contractions are coming." He couldn't believe it! He jumped out of bed, took a quick shower and we got all of my packed bags in the car and headed to the hospital. By the time we got there, I was already feeling some contractions and speed bumps in the parking lot hurt. A lot.

When we arrived to L&D we told them I had a planned c-section but we there just a bit early due to my water breaking. All of the nurses stopped what they were doing and laughed. They couldn't believe the timing either!

I was put into a pre-op bed and monitors were strapped on me. Contractions were coming every seven minutes or so. They tried to get an IV placed in my arm, but due to my deep veins they ran into issues. I'm not normally a fainter and have had plenty of blood draws and needle pricks in my life, but I passed out twice (horrible, horrible feeling) when the third try they finally got the IV in. Thank goodness.

I was running on no sleep and tried to rest a bit before everything picked up around 6:30am. I had a myriad of people come in and introduce themselves to me, but honestly, I can't remember much of who because of how tired and how uncomfortable I was. But finally a few minutes later, they said it was time to go to the OR. Kevin put his surgery outfit on, had a big smile on his face, and I was taken into the operating room and was told he'd follow shortly thereafter.

They had me step up onto the operating table and lean forward so the anesthesiologist could insert the spinal. I actually was more nervous about this moment than the surgery itself. But with his careful instruction, this was a breeze. I only felt a pinch as the pain numbing medication went in. I've had fertility treatments hurt more than that! Once it was in, they had me flip my legs onto the table where I felt this warmth come over them. It was welcomed because I was starting to feel a little chilly. During this whole time, I was barely speaking. They asked if I was okay, and I was. I was more than okay. I was just in utter shock. That's the best word I can use to describe it. I was in shock that our little girl was about to be born and the emotions were overwhelming. It was overwhelming and sacred.

I laid on the table taking in all of the emotions, sounds, and sights around me and Kevin came in. He held my hand.  I could feel them taping me with drapes.



Most of what happens next is a blur - out of sheer emotion I can't remember it, but it still brings tears to my eyes. After some really hefty tugging, pulling, and pushing, I heard the doctor say "wow, she's big!" and a few seconds later I heard her cry.



I don't know why her cry surprised me, but it did. I get that babies cry at birth, but for some reason I didn't register that would be happening. But hearing it was the most beautiful sound I've ever heard.

Kevin said "that's our little girl! that's our little girl!" We both cried for this moment we waited for our whole lives. The doctor held her over the curtain where I saw her open her big eyes and look down at me!

She was quickly taken about 10 feet away to the warming table where Kevin followed. I could see her little hands and legs kicking.




She quickly grasped Kevin's finger and held on tight.



They cleaned her up, bundled her, and brought her over for me to see again.



We were taken into recovery where I finally got to hold her and look at her. And I haven't stopped looking at her since. 

Tuesday, August 12, 2014

This little ginger

Lately, the days seem to go by so quickly yet so slowly all at the same time. Kevin has to go back to work next week which I'm dreading for lots of reasons. It's been so wonderful having him here, and he's been pretty much waiting on Sammy and me hand and foot. He's been cooking, cleaning, bringing glasses of water to me, changing diapers as needed, staying up late to help - he really is the best husband and dad anyone could ever dream of. And of course, I love having our little family time and will be sad when he has to go. But of course, real life must go on.

While Sammy sleeps, I've been knocking out to-do items like phone calls to insurance, tidying the house, etc and feel like I'm finally getting in a bit of a groove. I'm actually feeling hopeful that this VLCAD issue will end up being a false positive. Maybe that's the Zoloft talking, or maybe it's just the fact that the second screen did come back as normal. Either way, living without paralyzing anxiety has been a nice change. I can't believe how debilitating that kind of anxiety is and I'm glad I got help for it when I did. I do feel better. If any of you find yourself struggling with postpartum anxiety or depression, please don't hesitate to ask for help. I'm not ashamed to talk about it and neither should you.

As far as tests go, we still haven't received the results for both the DNA test that will tell us which embryo batch Sammy is from, nor have we received the definitive DNA sequencing for the VLCAD results. I hope to at least get the embryo batch DNA test back this week, and if not, I'll be making some calls. We could get the VLCAD results this week, but probably next.

Can I tell you how much I love this little girl? I don't ever want to lay her down. I want to hold her all day and all night. Of course, that's not realistic but it's what I would do if I never had to sleep, eat, or shower. I could just stare at her beautiful face all day long and tell her how much she is loved and was prayed for. I love our 'girl talks' we have after she's fully fed, changed, and happy as a clam. She's my Sammy snowflake and I always want her to know how special she is. Kevin and I tell her we love her at least 100 times a day, and that's probably not an exaggeration.

We've noticed she's got a red hue to her hair....

Ginger snowflake

I never expected Sammy to be born with red hair, but I think it's a wonderful surprise. Of course I would love her no matter what color hair she has - red, blonde, black, green - it doesn't matter! But I feel like there's a nod from my mom in that hair color somewhere because she always said Kevin and I would have a baby with red hair. And when we discovered my infertility, I had to grieve that red-haired child would never come to be. I wrote a blog entry about it long ago you can read here: The ghost of a red haired child.

When she's laughing in her sleep, which she does often, I think it must be my mom tickling her in her dreams! What else could a newborn baby be laughing at? ;-)

She's beautiful beyond comprehension. And not only do I feel overwhelming love for her, I also can't describe the overwhelming gratitude for the donor family who made it possible for her to be ours. We are so, so blessed.

I thank God for embryo adoption.


Tuesday, August 5, 2014

Some test results are in

We had our two week appointment with our pediatrician today. In good news, Sammy has been gaining weight and now weighs 7lb4oz. She's 80% breastfed and 20% supplemented with formula and the pedi is very pleased. I'm pleased too, because there are many days where I'm wondering if she's getting enough and this was a good reassurance that she is.

We were all waiting on the edge of our seats for the following tests to come back for VLCAD: A repeat state screen, a urine test, a first blood panel, and the final genetic test.

Today at our appointment, we found out that the urine sample was lost. Our pediatrician was so mad and apologized profusely to us for it, even though it wasn't her fault. We were frustrated about this too because it's hard to get urine from a tiny baby. They have to tape this little bag around her private parts, shove a cotton ball in her behind, and then wait. Not fun for anyone. But it is what it is.

But we did find out that the results for the first blood test had come back. They were "slightly abnormal." What does this mean? It could mean she has full blown VLCAD, is a carrier for it, or doesn't have it. So it doesn't tell us anything, really, other than cause me to worry. And while we tried to get more urine from Sammy in the pedi office, she ended up peeing all over the table instead of into the bag. That level of frustration nearly sent me over the edge into tears (Zoloft isn't quite working dependably yet.)  The pedi decided to call the geneticist to see if this urine test even mattered, and it turns out it doesn't much so we were able to skip it. The true diagnosis really hinges on that final genetic test that will say whether she has two copies (full blown VLCAD) one copy (a carrier) or none (neither.) So I'm really not sure why we even did the other tests, but we did and that's all in the past now.

But almost directly after we left the appointment, I got a call from the pediatrician saying the newborn screen test actually had come in and it came back normal. This is the same test that flagged us into this situation to begin with. I seem to think I have read somewhere that false negatives are possible the later out in an infant's life it is taken, but I took it as a small glimmer of hope anyway. So long story short, we have some test results in but are still left to wonder until this genetic screen is back in two weeks. More information, but not much we can do with it.

It's going to be a whole other kind of two week wait. I hope we survive with our sanity in tact.

Monday, August 4, 2014

Surviving

We're still here, surviving the past couple of days.

Despite my optimistic post a few days ago, I'm still incredibly anxious about this possibility of VLCAD. Who am I kidding? There's no question I was already suffering from a low level of postpartum anxiety, but having the possibility of this life-threatening and rare disease looming overhead has taken me to a nearly unbearable level of worry. I'm always watching Sammy for signs of metabolic distress. Was that jerky movement a seizure? Is she sleeping too much? Is that the lethargy I'm supposed to watch for? Has she eaten enough? If not, is there a phone nearby to call 911?

I mean, it's just maddening, really.

I realized after a good cry the other morning while holding her and pleading with God to please let her be healthy that it was time for me to take a Zoloft that my OB prescribed in the hopes to take the edge off of the anxiety. I know it can take a few days, but the first day it did seem to help a decent amount. Placebo effect? Maybe, but I'll take it. But now I"m noticing a few side effects. I'm having a harder time sleeping, muscle twitches, and yesterday morning I blacked out for a brief moment while laying in bed. I think the blackout was a combination of sleep deprivation, not eating well myself (it's been so hard to figure out when to eat a midst everything and trying to catch up on sleep) and my blood pressure meds. Apparently Zoloft taken with my type of BP med can increase the impact on my BP. After the mini blackout, I took my BP and it was indeed low. Kevin kept an eye on me and I'm hoping today is a better day!

But anyway, I'm not ashamed to say that I'm suffering from postpartum anxiety that has been immensely fueled by this newborn screening result. And I'm not afraid to say I need some help for it. I'm just hoping this help will help soon, and these side effects decrease ASAP. I just want life to normalize - to whatever degree it will be. I just want the dust to settle already.

We've done the DNA test to find out which embryo batch Sammy came from and are awaiting the results. I have no idea which day those will come back but once the genetic families know the results, I'll post them here too.

Sammy is just a joy beyond comprehension. I love holding her, watching her make her little faces, seeing her smile in her sleep. She even laughs in her sleep, and I know I'm not imagining things because it's happened multiple times and in front of others too. Just a joy and I love her more than anything! Kevin has been calling her chubby-cheeks-cheddar-burger which cracks me up. But it's fitting. :)

I just wish I could enjoy being a new mom to it's fullest without the cloud of uncertainty that is looming with these tests. I appreciate the continued prayers for peace, and for all of these tests to come back as a-ok and we can put all of this behind us.

Friday, August 1, 2014

Newborn photos

In general, it's best to get newborn photos done early on in life when the babies are sleepy and let you pose them into all kinds of positions. Unfortunately, due to the hectic life we've been living lately going back and forth to the doctor and pediatrician (on top of regular life as new parents) we didn't get to the photos until yesterday. And unfortunately, I think it was too late for many of those typical sleepy poses. But I got a few decent shots nonetheless that I'm excited about and wanted to share.









We just love this little girl!

Wednesday, July 30, 2014

Things are looking up

As you probably recognized from yesterday's post, things were bad yesterday. I even ended up calling my OB nurse because I felt like my health was also suffering after we got the news. My BP was very high and I was dealing with serious, serious anxiety. They put me back on the BP meds I was on during pregnancy which also helps with anxiety and also prescribed me Zoloft. I'm already feeling a little more in control today just from the BP meds alone but glad I have the Zoloft if I need it.

Yesterday morning, I tried to make an appointment with the specific geneticist we were referred to, but I found out the earliest that he could see us was October. I just about lost my mind. I felt like I was in no mans land - just enough information to scare the life out of us but no one could help us get answers. I ended up calling the pediatrician's office and asked if they could get ahold of the geneticist and make something happen sooner.

As we waited for the call back, we took our precious little Sammy girl into the children's hospital to have her blood drawn. I was running on no sleep, and watching them pin her down, tourniquet her tiny little arms until they were white and poke her while she shrieked, was a little piece of hell for me. I know parents watch their kids go through far, far worse things and that this is nothing. But to me, I was just sickened and it was awful.

Our sweet, little Sammy sleeping at home after the blood draws earlier in the day.
When we got back, the pediatrician called. He said he couldn't get us in sooner, but that he had talked to the geneticist about the situation. The geneticist didn't think our situation was even remotely an emergency! And in fact had said, and I quote, that "95% of these state mandated screens come back as false positives"! I knew that there was a chance this could be a false positive but knowing an expert in this field was saying this gave me a huge, huge rush of relief. I still worry about being in the 5% but those odds are incredibly promising. I could sense in the pedi's voice that his urgency had declined after talking to the geneticist.

We also got some answers as far as timelines and tests go. Sammy had a urine collection done on Monday and her blood draw yesterday. The geneticist recommended a third test, which would require a blood draw to check for some enzyme or something (I think?) Because we had just returned from the lab, we will have to go back on Friday to have poor Sammy poked again for more blood. But that should be the end of it, I hope.

We should have the urine and first blood test back within 10 days or so and those results should be pretty telling about where we stand with this disorder being legitimate or a false positive. And the final blood test will take a month but will seal the deal either way. I pray that these initial tests are so blaringly clear that we won't have to worry for that last test and it's just final confirmation that this truly is nothing.

Anyway, there's my update on her health and I am so, so grateful for the kind words, prayers, and encouragement from my blog readers. I know that this is what being a parent is all about - being worried because you love your baby so very much.  But I had no idea we'd be going from the typical new-parent kind of worrying about things like colic, weight gain, sleeping etc to being thrust into knowing which signs to watch for in the event of a seizure, or that we must take her to a particular children's ER in the event of an emergency from the VLCAP situation.

And on the breastfeeding front, I hired a lactation consultant to come over last night. Ever since the news of the genetic test results, Sammy hasn't been latching. I figured she could sense my stress. She roots really well, hops on, but then gives up after a few seconds after attempting to latch. We've been frustrated and have been supplementing with formula while I pump. Despite that, my supply has been growing and the LC was pleased with where I was at with it. And as far as the newly developed latch issue, it turns out that we just have to entice her with a little milk on me first before she latches and she will get going on it! The LC said that once we introduced bottles, she got used to immediate reward with the milk coming out. On the breast, she has to work for it and has gotten impatient so gives up when nothing comes out in a suck or two. Why work for something when it comes out so easily from the bottle?  T his baby girl is just too smart for her own good. :) I had no idea how intelligent such a tiny little baby could be, but I'm learning every day!

We weighed her and she's finally gaining weight and her jaundice has all but disappeared. We also have clear guidelines on how much she should be eating every day - something we've been clueless about. We've also rented the LC's very sensitive scale that can tell how much she's consuming. I feel in control of breastfeeding again and it's a really wonderful feeling. I have no problem supplementing or using formula if we need to go there, and still need to top her off from time to time, but I am so glad we are back on track with it.

I'm well rested today, on my BP meds and feeling better, and I hope to finally tackle her newborn pictures to share with you all.

Again, thank you for all of the support and prayers, and please continue to pray that we aren't in the 5% of these screens that are not false positive after all. I still do worry.