Continuing Hope in the Darkness 03/25

Tonight I actually went onto my registry online for the first time since I created it (before we heard the diagnosis) and I actually continued it and added items, as well as girl things since we now know its a girl. I picked out her bedding, with coordinating curtains with a valance and butterfly rod, an adorable birdcage chandelier, book shelves, boppy cover, basket liners, toys... the list goes on. I am dying to create her nursery. I can see it all now... like she's going to be here. Will God grant my sweet Lyla a miracle and have her come home with us? I know it is completely possible, I believe it can happen and I can see it happen:
>>She comes out of the womb and is functioning fine... the day goes by and she is holding on tight. A day goes by as well as another and she is getting stronger and better, still not showing signs that anything is wrong; no abnormalities. Finally they decide to check her again and low and behold the doctors are baffled and don't know what to make of the case, but it seems that her cells are showing 2 normal chromosomes on every level. She is healed!! A miraculous healing just took place and the doctors and their science don't know how to explain it!<<

I will meditate on all your works and consider all your mighty deeds. Your ways, O God, are holy. What god is so great as our God? You are the God who performs miracles; you display your power among the peoples.    Psalm 77.12-14

As much as I don't want to 'get my hopes up' and be even more disappointed and distraught in losing her, how can I not still hold out hope for my little girl?? These visions are what's getting me through and I know regardless, God's will WILL be done and I will praise His name through it all.

As the deer pants for streams of water, so my soul pants for you, O God.My soul thirsts for God, for the living God.When can I go and meet with God? My tears have been my food day and night, when men say to me all day long, "where is your God?" These things I remember as I pour out my soul...Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.   Psalm 42.1-5

Hopefulness 03/24

During my fabulous shopping trip I felt great. I felt encouraged and inspired and she was moving ALL day long. More than I had ever felt her before. I felt hopeful. I was actually looking through PBkids at bedding and imagining her nursery and smiling. I wasn't thinking at all that she wouldn't be here... I was imagining her coming like everything was going to be fine. Her movement throughout the day gave me encouragement and the whole day was filled with smiles and laughter and happiness. I was pointing out how cute this little girl comforter set was with the bows tied on the ends and right when I said that she gave me a big kick, like she was saying "agreed! that is way cute mommy!" I loved that.

Later that night as I was falling asleep I started feeling weird. I don't know how to describe it but finally it was like everything hit me again. I wondered if I had been in denial all day about the reality of our situation and I felt sick to my stomach. I don't think so, because I am very much prepared for her leaving us. That's why I picked her outfit, got the keepsake box and have been searching for urns on the internet. I'm not in denial at all, but I've come to the realization that this is how it is going to be until she comes. I'm pregnant with a little girl who gives me reminders of her presence everyday, yet the doctors have given her a diagnosis that's incompatible with life. I'm struggling with having to prepare for her death while also being happy and enjoying her now. There's a constant struggle between the two because we literally are in an in-limbo situation until she arrives. The happy, encouraging bursts I get of hopefulness are what's getting me through these coming months and I am so thankful for them.

Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.   Isaiah 40.31

Preparing for Lyla Giuliana 03/22

Lyla is expected to be very very small when she's born, regardless if she goes till term or not. So I've been trying to find some clothes for her, at least one outfit to put her in when I finally get to see her. I've noticed a lot of mom's in my position have put there baby girl's in long white burial gowns but I can't bear to see that on Lyla. Plus she is my daughter, so I know she will be a little fashionista!

There's preemie clothes, which are also seen as 'up to 7 lbs', but there is a huge difference between a 2 lb baby and a 4 lb baby. So I've felt like I needed to find micro-preemie clothes. But those are impossible because they're all made to be put on very easily and made to be comfy because babies that are considered micro-preemie's are between 1-3 lbs...what I'm thinking Lyla is 'suppose' to be. And most of these babies are in the NICU and don't need fru fru clothes anyway. They're so small and delicate, I'm guessing that is why none of the clothes are cute like all other normal baby clothes. So I set out to Gymboree, Janie & Jack, and babyGAP in search for at least some preemie clothes for my sweet Lyla to wear and look cute.

I managed to get an extremely helpful sales girl at Gymboree who asked what I was looking for. I told her preemie and as the shopping went on and she helped me, of course the questions came of when I was due, how I knew she'd be a preemie, etc. And so for the first time since the Triploidy diagnosis I shared her story with a stranger. She was so compassionate and easy to talk to that I felt extremely comfortable with her, especially because the first thing out of her mouth besides the look of a sad face was that God had the final word and that it was not over yet. I am so thankful for her and it was so nice and reassuring to get that same hopeful outlook for a miracle and reminder that the Lord is the ultimate Physician and He hasn't given His diagnosis yet like I've said before. She proceeded to help me find anything I could and made multiple trips to the back of the store in search for any stray preemie clothes lying around. I fell in love with these little jean shorts with a pink bow belt. But of course the smallest size was 0-3 months. Needless to say I hung onto them the whole shopping trip. In the end, I got a preemie onesie with pink writing, and gave in to the jean shorts and a pink TuTu!! I know I'll have to pin the bottoms to make them fit her, but I think it's good enough for my sweet angel. She will be so pretty!

I had also been torn between what to do for a baby book/album. Most baby books have spots for milestones after of the baby grows, like first day of school etc and I didn't want to get one and have half the book be filled. It'd just be a reminder of how little time she was here. So I thought about just a simple photo album, where we could put all of the pictures we're taking now of all the places we're taking her. But then I knew there'd be more things of her and keepsakes I'd want than just pictures. It was then that I ran across the perfect thing.  A pink keepsake box from Pottery Barn kids. The top of the box has a frame for a picture as well as a foot print and the inside has a place for keepsakes, mementos, any written notes, photos etc. I am so glad I ran across this. I feel like this box will be perfect to store all the memories we will be having with her.

Apples 03/21

Lyla loves them! Every time I eat an Apple she moves a little more than usual. I now try to make sure I eat an apple every day just for her. And before I go anywhere, I cut up an apple and put it in a baggie as Lyla's snack for the road :)

I love her.

I Will Carry You 03/19

I've been reading the book I Will Carry You by Angie Smith and I absolutely adore it. It's based on her family's journey with their daughter Audrey, which is so similar to ours. She was given a diagnosis of being incompatible with life as well, and they decided to carry her to term. They ended up getting 2.5 hours with her.

Like I've said before, I feel like God had been preparing me for this from the very start of the pregnancy, and I owe the way I feel today to Him. Of course I go through rough moments and sad times, but even in those times I still feel comforted and protected by Him. I'm not worried about anything and I'm certainly not angry. The only negative thing I'm feeling is sadness which I know it completely normal. I feel like I can relate to her book tremendously. I'm almost done with it, and in the ending chapters its all about after the birth and dealing with grieving. A part of me wants to hurry and give birth and try to conceive again... rush through these next couple months. But the other part wants it to slow down so we can really experience Lyla while she's with us.

I included the Smith's video about their daughter Audrey.

Dealing with the Public 03/19

So I have had 2 run-ins so far, where I've been out in public and someone has made a reference towards my pregnancy. Once at the store by the clerk and once by the realtor woman where we are looking at houses. Both of them asked when I was due and I just replied July with a smile both times. I thought I'd be ready to tell people straight up whats going on, like I typically do with people, but I surprised myself when I couldn't do that. I'm sure that day will come soon.
We recently got a card in the mail from the realtor at the subdivision, saying it was nice meeting us, that she looked forward to doing business with us, to call her with any questions, and a p.s. that read "the clubhouse would be great for a baby shower!"... that one hurt.

Conflicting Feelings 03/18

I find I've been struggling with my feelings of people talking about Lyla and her condition. I feel like I WANT people to ask about her and at the same time I get annoyed talking about it. If someone calls or texts me and almost avoids the subject, and just goes into normal everyday life things, it annoys me because it makes me feel like they're forgetting that I am going through something so heart wrenching and that I am going through a pregnancy in which my baby is dying and I'm not going to bring her home. I know that everyone probably just wants me to feel better and they don't want every topic to revolve around such a sad subject.
And I also have people who do talk about it a lot and ask the same questions and I get so irritated and don't want to talk about it! I feel crazy because here I am wanting people to stop talking about it, but also getting offended when people act like everything's fine and normal.

Making Memories with Lyla 03/17

This past weekend was really fun for us! We're looking to get a house soon. Within this year! My husband's a country boy and I'm a city girl, so we're meeting in the middle and hopefully going to go with a subdivision that's getting built now. We're still going to work out all the details but I got really excited visiting it this weekend. I feel like I need something to look forward to during a time like this. I'm hoping maybe this will distract me a little bit from my every day feelings of thinking of Lyla not being here with us after she's born. We've decide that we want to take photos whenever we go somewhere worth while, like we're taking Lyla places and going on adventures with her... showing her things while we can. We stopped by my husband's land and rode in an old dump truck he has on his land and took some pictures. We also stopped by a carnival we found on our way back home. I died because I'm obsessed with fairs and carnivals and it seems like I always miss them whenever they come to town... so that was a special treat! Hopefully we can fit some fun stuff into our calendars to show to Lyla.I've decided I want to show her everything I can while she's here and talk to her as much as I can. After hearing a diagnosis like the one we got, it can be hard to realize that your child is still here with you, that they're not gone yet. So we intend on making these coming months the best ones and celebrate her while she's here.

Carrying to Term 03/12

We met with our genetic counselor to discuss what we do next and what to expect. She said we had the option to either terminate now and not delay the inevitable, or we could carry on with the pregnancy and let nature take its course. Of course, we are going to carry her as long as she needs us to. God is the ultimate physician and we aren't giving up until we get a final diagnosis from Him. After all, our little girl is still fighting, and we're not giving up on her. The counselor told us that we'll be monitored more frequently than in a normal pregnancy and we'll just keep an eye on her. Theres a more than likely chance that she will pass while still in utero. If that's the case, they will induce when they find that news out and we will give birth to our sleeping angel. If she does make it to term and she is born alive, we'll most likely get anywhere from a couple minutes to a few hours with her. There have been a couple instances where a Triploidy baby has actually made it multiple weeks, even months and was able to go home, which we are praying for! Anytime with her would be a blessing. There was one case of a little boy who made it to 10 months, but he was also on a ventilator and being kept alive, which we already decided we would not do. That seems more like torture to me!

So at this point it seems to be the waiting game. We're going to enjoy Lyla as much as we can while she's here with us and wait for God to take her home. It is all in His hands and I fully trust Him and will follow Him where we are going. God is good!

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body.

Psalm 139:13-15 

FISH results 03/11

Finally we got the call about the quick FISH results from our genetic counselor. She said that the results came back that she does have something...it's not Trisomy 18, but Triploidy. A condition that's even more fatal, if thats possible and most certainly is incompatible with life. Everybody has 2 of every chromosome... well she has 3 of every chromosome. An entire extra set of chromosomes. We were told that this is a completely sporadic event that is random and an 'accident'. There is no genetics involved and its nothing that can be passed down. This happens to 1-3% of the population and most of the time babies don't even make it past the 1st trimester. It's said that we don't know exactly how many people have triploidy pregnancies that don't make it, because the majority of them are actually miscarried in the 1st trimester, which a lot of people never get a diagnosis for. The fact that our little girl has made it to 21 weeks is a miracle! 

For you created my inmost being; you knit me together in my mother's womb. I praise you, for I am fearfully and wonderfully made.   Psalm 139.13-14

Level II ultrasound 03/08

We prepared ourselves for the worst as the level II ultrasound begun. This tech was so friendly and the doctor was in there as well and I really liked him! What was so amazing was that this time, there was a huge tv screen in front of me so I could watch the entire ultrasound and everything was magnified! I found so much comfort in this because I had been praying that we would get a doctor who knew what they were doing, and that we'd get a tech who was friendly. We ended up getting so much more than that! One of the first things the tech announced was that it was a GIRL!! And coming from Adam's family that is dominated with boys, I thought I'd be one of those moms with 4 boys, praying for a girl to finally come, and here she was, our first child, a girl. She was beating the odds already! I'd like to say she had no markers at all! Her head/brain/skull looked great, her arm and leg measurements were great, feet looked good, bladder, kidneys, other organs, all there and functioning. He did notice she had an SUA cord (single umbilical artery) which isn't too big of a deal. Although it can be a marker, it also is a condition that exists on its own, especially in girl babies and is usually accompanied by a growth issue like IUGR. Because of the way she was sitting they couldn't get a good shot at her heart or her hands. The doctor said he thought he saw something on her heart but honestly wasn't sure, and we'd have to wait about a month for another ultrasound after she had grown some. Needless to say, we actually felt pretty good leaving there because we basically saw nothing wrong (besides her growth issue and SUA) which we knew could be a problem all on its own. And we were so happy we found out she's a GIRL! We did elect to do an amniocentesis to know for sure, because there was an obvious issue going on because of her growth, and the fact that my AFP results came back with 1:2 odds for Trisomy 18, its seemed like the right thing to do.The next 2 days were full of praying. Praying for the amnio to show that it was not Trisomy 18 and that everything was normal and that all we would be dealing with would be an IUGR baby, which I was completely educated about and ready to take on. And praying that God's will be done and that however the diagnosis turned out, we'd know it was all in His plan and that everything would be okay. 

Abnormal Blood Work 03/07

Monday, the day before our target ultrasound, I get a call from my doctors office with my blood work results. I had read that in most IUGR cases, the bloodwork is always elevated in some area, because of the likely bad placenta. So it was no surprise that she told me it was elevated in a certain area. She then said I was at 1:2 odds for Trisomy 18. Those odds are horrible. I did start to breakdown about it because that was a completely new thing to consider. That night I researched it and found out its fatal and that it is incompatible with life. Most babies show deformities and many of the markers are visible through an ultrasound. The markers we were looking for were things like : clenched hands, club feet, cleft lip/palate, multiple heart defects, cysts in the brain, abnormal kidneys and excess amniotic fluid. 
So that night our prayers consisted of praying it was an IUGR case and that's all. That they won't see any markers whatsoever and that if we do an amnio, it will come back normal.

BIG 20wk ultrasound 03/01

Today was our 20 week BIG ultrasound appointment where they were going to do the anatomy scan and in our minds, most importantly tell us the sex of the baby! Our ultrasound tech was a pretty unprofessional person being that our very first ultrasound with her at 7 weeks, she was cursing up a storm talking about her bad day and abusive father who she no longer cared about and was glad he was currently alone in a nursing home! So going in for our second and very exiting ultrasound, we just laughed at how out-there her personality was and that she should be entertaining once again for this appointment.She began the ultrasound and was pretty quiet.
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And let me first say that for most of this pregnancy I've had a feeling that something was wrong or off. Starting from the beginning, our very first ultrasound on December 9th at 7 weeks, the baby was measuring 1 week 'behind' according to my last period which gave me an expected due date of July 24th, 2011. So because of that, they actually changed my due date to July 30th, 2011.That should have been the first sign that something was wrong, even though yes, many women do get their due dates changed all the time and have perfectly healthy babies. From then on, I've had fleeting thoughts of wondering how the baby was growing. I always wished we had more ultrasounds in between because I wanted to see if it was developing right. Within a couple weeks from then I started to have some spotting. Because it was always a brownish color, my doctor said not to worry, that it was old blood, from ME, not from the BABY and that it is really quite common. Let me tell you, that spotting did not stop for a month and a half. Finally, it did stop for a couple weeks and I was relieved. I then had two episodes in February, 4 days apart, of spotting bright red, but only a little bit. Since then, I have not had any spotting whatsoever. That issue probably added to my idea that something wasn't going quite right as well as what my intuition told me. After doing some research, I expected to have a placental problem of some sort, nothing too serious.This whole pregnancy I have been praying for God to heal my baby if anything was wrong and to bring me peace and comfort for any news we were going to find out.
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Going back to our BIG ultrasound... we were excited! I was trying my hardest to push my negative thoughts to the side and just be happy to be able to see my baby on the screen and finally find out if it was going to be a boy or a girl.The tech started and was pretty quiet. I was getting antsy so I had to ask, "Is it alive?" She said yes, she sees it moving around. She started at the head and worked her way down to its legs. My husband Adam and my mom were with me. They kept commenting on the baby's 'long legs' and that it was moving its arms around. She was measuring our baby with one hand while nursing a coffee in the other. I don't know why, but this rubbed me the wrong way. I couldn't wait for her to turn the screen towards me so I could finally see my baby! Whens she did, she started to explain the its abdomen was abnormally small, actually, it was VERY small compared to the rest of the body. She said the head, legs and arms were measuring normally, but that the abdomen was extremely small. I was like "okay" trying to keep my composure.Instead of going to get the doctor or explaining what she was seeing further, she began to get very fidgety, stuttering her words, saying she's never seen this before in her 20 years of doing this and that she's 'just so confused' while giving us the visual of her throwing her hands up in the air with a look of disbelief. Then, to make matters worse, she started throwing out random thoughts, like making comments like, 'well it doesn't look like a case of dwarfism, does that run in any of your families?' Umm, no lady, and before you go any further, go get the doctor and don't say anything unless you actually know what you're talking about. We asked if she could see the gender and she told us, she couldn't tell. In other words, she was so stunned by the look of our baby on the screen, she didn't even try. I started crying my eyes out while we waited for the doctor to come in. When he did, he didn't tell us much else besides that he's seen it a couple times before, and that he wanted us to get a level II, target ultrasound at UAB in Birmingham because they had better machines.

Leaving the doctors office, I still had to get my blood work done, so in tears, I went to do that. They said we should be hearing from them with an appointment at UAB as soon as it was done. Adam called UAB directly that whole day trying to get some news, praying we'd be able to go in the very next day to ease or mind and get some answers. Finally at the end of the day, they mentioned on appt for tuesday of the following week, March 8th. We got through the week and weekend by doing a lot of research and praying for our baby! In all honesty, I was not nervous at all about the target ultrasound because through all of my research, the only thing that kept coming up was IUGR (intrauterine growth restriction). There is symetircal, where the whole baby is measuring smaller than it should, and asymetrical, where only one part of the baby is measuring small (in our case, our baby's abdomen). What we found was that these babies were almost always delivered early, weekly monitoring and ultrasounds would be performed, and the minute the baby stopped growing (which they always would), they would then induce and the baby would be in the NICU, and end up thriving and growing. They are always small for their age, but typically catch up completely though their toddler years. I also read that the culprate to this issue, was in many cases a bad placenta or SUA cord. I was completely fine with this diagnoses and was actually praying for this diagnosis!! That got me through to the next week, the thought that our baby was fine, just small. So I started eating overtime to make sure my baby was getting as many nutrients that it could!