Saturday, August 30, 2014
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, 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
And PS, the ring sling was great. Sammy slept through the whole thing!
Wednesday, August 13, 2014
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.
Tuesday, August 12, 2014
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....
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
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
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
We just love this little girl!