Pain, Grief and Joy 04/18

The past couple of days I have felt unusually sad about Lyla's condition. From the beginning I was always very hopfeful and feeling okay about everything. But the past couple of days I have been feeling hopless, even though I hate to say it. For some reason I feel like everything has just hit me in a new way and I'm realizing for the first time, the seriousness of her condition. It's like I'm finally realizing the matter of fact 'truth' about how this is going to go and how it's going to end. The fantasy about bringing her home no longer makes me excited and ready to decorate a nursery, in hope that she'll spend awhile with us. I now imagine just how tiny her little body is going to be, and I'm picturing putting her like a rag-doll into a carseat meant for 'nomral sized' babies and seeing a single strap envelope her entire body. It makes me sick to my stomach to think about and I can't bare to imagine it anymore. Why can't she just be okay and start growing?!
I know I haven't truely lost hope. I just have fleeting moments of feeling sad and angry that this is happening to my sweet girl. She doesn't deserve it and it frustrates me.
BUT as I am feeling all of these things, the Lord has a way of letting me experience the pain and grief, but giving me joy as well. This morning, before I was even fully awake, Lyla decided to give me about 7 or 8 bonafide kicks. I was so taken by the force of them that I let my hand rest on my belly where she always lays. Sure enough, I felt her for the first time, kick from the outside. I was so mad that Adam wasn't there to feel this. Her movements are typically so gentle and delicate, it's impossible to feel from the outside. I wondered if we would ever be able to experience this because of her size and lack of weight. I had also heard that many triploidy babies lacked muscle tone...not my little girl. Her kicks today were proof of that!
It's funny how opposites can coesxist together. Pain and grief and joy often dance together in moments like these.

When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say 'Joy is better than sorrow,'

Others say 'Nay, sorrow is the greater.'

But I say unto you, they are inseperable.

- Kahlil Gibran

Cherry Blossoms 04/14

As you know, I have been reading Angie Smith's I Will Carry You, and there is a chapter about Cherry Blossoms. They just so happen to be my favorite tree next palm trees, and i wanted them more than anything for the cetnerpieces at my wedding. I had the florist call everyone everywhere across the world. I started planning the wedding theme around the cherry blossom cetnerpieces. At the time, that was the most important aspect of the wedding planning and the vision I could not let go of. Unfortunatly, it's bloom peaks in the spring months, and my wedding was in late August.
The chapter talks about the cherry blossom and its important meaning. Part of the beauty of the cherry blossom, is its immacualte bloom. Once it blooms, beauty is all around, and shortly later, its gone. All that's left is the pieces, showing as visible reminders of the beauty that was once there, in full bloom. It's life is short, yet brings so much beauty.
According to Flower Expert Online, the original name is the Yoshino Cherry and its defininition stunned Angie Smith as well as myself:

The Japanese Cherry starts flowering profusely from the first warmer days of April, heralding the coming of spring. The intense beauty and short survival span have associated cherry blossoms with spiritual and philosophical ideas (such as the beauty and fragility of human life).

The cherry blossom that I have always loved, now holds an even dearer spot in my heart. My sweet Lyla is just like the Cherry Blossom. She is with us and bringing so much beauty, yet she will only be here a short time. I hope to be able to plant a cherry blossom tree one day when we have a house...to plant hope and life in a season of loss.

Appointment 1 04/12

We had our first official appointment as patients of UAB where I have decided to continue at through this pregnancy. They are suppose to be one of the best in Maternal Fetal Medicine. Because the appointment was in the early afternoon and Adam was working, I went to this appointment by myself. I noticed that whenever we had gone to our ultrasound appointments, the waiting room is filled with pregnant women and their husbands. However on the regular appointment days, the waiting room is only filled with pregnant women! The only exciting moments of a pregnancy appointment is the ultrasound so it makes sense that the husbands want to go to that one!
The appointment began with a urine test and blood pressure. Thankfully my blood pressure was good and 'low'. That was one of the things I was worried about and was anxious to see what it was. Pre-eclampsia is common in Triploidy pregnancies, so later, the doctor informs me that I'll need to get my blood pressure checked every week and that I should log it down onto a calendar. The minute it exceeds 130/80 I need to come into the hospital.
As I had said before, I had a great experience my first visit when I had Dr. Davis and a miserable experience with our second visit because of the woman doctor I didn't like. I was curious as to whether I would be getting a 'primary' doctor with them... the one doctor I would be seeing every time I go in, or if I would just see whoever was there and someone different every time. When the doctor came in, it was another woman, but right away I liked her. One of the first things she said was how sorry she was about our bad amnio results. She was so kind and sincere, I immediately felt like she cared and was comfortable. After going through some medical history, I had asked her if I would be getting one doctor or if I'd be seeing different ones. And she responded with the fact that herself and Dr. Davis are the ones who will oversee me, so I'll be seeing both of them throughout this pregnancy. I immediately felt so happy and relieved. That was one of my worries and I am so thankful that my doctor's now include the one I loved all along and this doctor that I already had a fondness for.  I had told her that last appointment I went completely blank and couldn't think of anything to ask, but I had brought a list of questions this time. Right away she was ushering me to get them and ask away.
This appointment I found out that according to our last ultrasound, Lyla weighs 10 oz., (common weight for a baby at this stage is 1.25 pounds). She is not expected to exceed 2.5-3 pounds even at full term, so I also won't be growing too big. Even if we make it until July, I won't be looking like I'm 9 months pregnant. I'll be on the smaller side, just like my little peanut will be! I also was informed that they will gladly give us more pictures from our ultrasounds, even previous ones that we've had. These are some of the only keepsakes we will have of her, so I was pleased to hear that they would accommodate us in that way.
A different team of neonatologists will be delivering her when the time comes and they were nice enough to set us up with an appointment to meet with them so we can be more informed of the Labor and Delivery process, as well as the things they will do for us and also so we can make are needs known to them about how we want the process to go when it's time for us to bring Lyla into the world.
All in all, I am so happy with my first official appointment as a UAB patient, as well as my 2 high risk doctors who I will be seeing for all my appointments and ultrasounds! My next appointment is scheduled for 3 weeks from now where I'll also be having a glucose test to check for gestational diabetes, as well as having our meeting with the neonatologists before the appointment.I just keep praying that God will continue to send us the right people to be included in this journey with us!

2nd appointment at UAB 04/05

Today was our first ultrasound and visit with a doctor since we got the Triploidy diagnosis. I was so nervous this morning that I had the worst indigestion, of course, and felt nauseous until we got to UAB. I have no idea why I was so nervous, we already knew what she had and I knew she was alive because I've been feeling her moving, but I was! We got to the building and could not remember what floor we were suppose to go to. We went to the 5th floor...not it, then the 6th floor, not it... then the 10th, and yes that is the floor. Now we know we just go to the top floor!

After signing in, the receptionist asked what doctor we were seeing. I said Dr. Davis because that's who we saw last time and who I was expecting to see today...as a follow up since he was there from the beginning of our level II ultrasound, and the one who did my amnio. She informed me that no, I wouldn't be seeing him today but a Dr. Jenkins, who everyone liked as well. I walk away and look at the receipt from our co-pay and it says Dr. Jenkins, Sherri. We were seeing a female doctor this time. I don't have anything against female doctors but I have always personally preferred male doctors. In my experience they were always more comforting, more informative, always told me what I needed to know, were sensitive and concerned when I needed them to be and never belittled anything I was feeling. I felt like I could trust them and felt they were confident in everything they said. I always specifically request a male doctor whenever I have to change doctors or get a primary doctor in a different division. It was probably ridiculous for me to freak out over this but in the moment, with my nerves, being pregnant, expecting a certain outcome for today with the doctor who knew us from last time, I was not okay with this doctor switch and it threw off the rest of the appointment.

When they came out and called our name I heard a C sounding last name and shot up like that's us!! And started to walk in, then it hit me that my last name is Epperson, NOT my maiden name of Covalt and was so embarrassed. I was like actually that's not us, I thought you said my maiden name, then realized you didn't have me registered as that! That was how frazzled I was this morning. 

When it was our turn, it didn't help the situation that when we went into the exam room the ultrasound tech, the same one from last time that I really liked, didn't remember us! I felt so good at our last appointment: I liked the tech, the doctor was in there the whole time she was measuring, as well as doing it himself, talking to us the whole time, making comments, doing our amnio, that I felt so safe and comforted with them. I was wanting that same experience with people who I felt 'knew' us and our situation that it was disappointing to see that we were't even remembered by the tech who saw us less than a month ago. 

She began the ultrasound and measurements before the doctor came in. And here's where all the good news is! SHE LOOKS GREAT! Her measurements were still small, she was measuring 20 weeks and I am 23 weeks right now (24 this weekend). And the abdomen is still measuring smaller than the rest of her, but she's growing! And given the fact that at full term she's not expected to exceed 3 pounds, it makes sense that she'll aways be measuring behind/small at every appointment. From what they could tell right now, her head, brain, kidneys, bladder, legs, feet, all of that looks perfect! Last ultrasound the doctor thought he saw something on the heart, but her heart is great! And the amniotic fluid looked perfect so I know her kidneys and bladder are functioning well! She is basically developing so well right now, she's just small. I was praying this would be how the ultrasound would go. That way I could feel like maybe we could possibly bring her home! This is also what is so confusing. There is a long list of abnormalities and deformities that are common with Triploidy babies and she didn't have any of them. If she looks so great and everything is developing and functioning, and she has no abnormalities besides her small size, it's so hard to see that somehow she is still incompatible with life.

When the doctor came in, one of the first things she said was, "So... update me, whats going on?" Umm, did you not read my chart and understand? This is why I wanted to see the doctor we had from last time. I didn't want to have to explain everything to her and make her understand what our journey has been like thus far. She was definitely a nice woman , wasn't rude at all, but I felt like she was matter-of fact and insincere, not fully investing herself in us and our little girl. She then sat down to talk to us and I thought, great, this is what I want, I want to know everything I can and learn what to expect and what's ahead for us. I wanted her to begin talking and tell us everything she knew about this, what her experiences were with this... I wanted to know everything. All she said was for us to ask her questions. My mind went blank and I could not think. I was on the verge of tears and wanted to say, give me 5 minutes so I can cry, then we can continue this appointment. Thankfully Adam started it off and began to ask a couple questions. 

We found out that I will have more frequent appointments, about every 2 weeks so they can also keep an eye on my blood pressure as well since Triploidy pregnancies often bring on pre-eclampsia, and that ultrasounds will be done here 'n there to check on her growth. She also said that she expects us to carry her full term into July and if things continue to go well with her development and she breathes well on her own after she's born, we could very well bring her home! I know we never know what will actually happen and we know just as much as the doctors know about this diagnosis, but it was nice to hear!

We only got one photo from the ultrasound, another potty shot saying 'It's a girl', but her head is also included in it. She likes to sit scrunched up with her feet by her head, so the picture shows the top of her head, her booty and her legs up in the air! She's so funny!!

Nervous/Anxious/Excited 04/04

So tomorrow we have another appointment and ultrasound! This is the first time we will be meeting with a doctor since we got the diagnosis of Triploidy. I'm looking forward to it because I'm sure we're going to be getting all the information we need about what to expect for this pregnancy and if we need to look out for anything.
I feel on the fence, once again. Part of me wants her to still show no markers or abnormalities. I want to see that she's growing and catching up, and basically looking healthy, just small. That way I feel like there is reassurance that she will make it to term and we will be able to meet her alive, if even only for a few moments. Then the other part of me wants her to look worse and for them to see more signs of triploidy because that it just reaffirms that she's sick and will not make it. It's hard not having a definitive answer as to when she'll go.
I'm just praying tomorrow goes well and we feel comforted no matter how the appointment goes. The weather forecast for today and tomorrow was suppose to be cloudy and rainy. We're in the middle of a thunderstorm right now and I was not looking forward to going to our appointment on a yucky day. Well, the news just announced tomorrow is actually suppose to be sunny!! Thank you Jesus! I'd like to say that that is His special gift to me tomorrow! I am so thankful!

Preparations? 04/02

Since I've finished the registry, I am wanting so bad to get her whole nursery put together. I am imagining her whole pink room and how cute it would be down to every detail. From the birdie bedding, to the curtains with matching valance, to the bird mirrors and the birdcage chandelier. The birds fit her so well and I had an overwhelming attachment to the set the minute I saw it in the store. I couldn't leave it.  A part of me very much wants to get everything and have it prepared for her. A sign to her that says we haven't given up and we're not going to give up. But I also can't bare the thought of a physical reminder of our loss through an empty, vacant nursery. It's so hard to figure out what to do.
We've got her 2 outfits, 2 blankets, some stuffed animals and her keepsake box. But I want to get her more. I have moments where I don't know if its hopefulness or fleeting flashes of denial but I want to get everything for her and be prepared for her arrival. I know her chances of making it to term are slim, and if we are able to meet her alive, it'll be for likely for only a few minutes... but there is a possibility that she will come home with us for a couple days! And if that does become possible, what would I do, say okay thanks, just watch her while we run to the store real quick to get some supplies? I'm pretty sure you can't take a baby out of the hospital without a car seat right? So do we buy one, in case she does in fact get to come home? How about a bassinet...where will she sleep? Although we're getting a crib and a changing table to have and for hopefully our future family, we're not getting any bedding to put on it. And given her condition and the limited time we have with her, there's no way I would put her in the crib in a complete other room, so she'd have to do the bassinet. But then again, I know for a fact if she came home, there's no way I would sleep! Why would I waste precious time sleeping that I could have with my daughter? So given that, I guess I really don't even need to prepare much for her because she would be in our arms the entire time! I would never want to put her down.
Sometimes this all gets so confusing. I'm pregnant with my little angel, moving inside me, and not able to prepare for her. And not preparing for her in many ways, makes me feel like I've lost hope. So if preparing for her represents hopefulness, and not preparing for her homecoming represents the loss of hope...what do i do? That's the line I keep teetering back and forth on. I have hope and believe that she can be healed, but if I only think of her in the fact that she'll be with us, and it turns out she's not, it'll make losing her that much harder.

Find rest, O my soul, in God alone; my hope comes from Him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God  ; he is my mighty rock, my refuge.   Psalm 62.5