I'm scared.
I don't know how I will get through this.
My faith in God is still there and I am so thankful that this situation has motivated us to go to church every Sunday. I love our church and Matt and I always feel so awesome when we go. It's part our Sunday routine, and I wouldn't change it.
My faith has grown stronger in God through these past few weeks. I'm so aware of everything going on with Micah, but I always hold on to the idea that I will give birth in July to a perfectly healthy baby boy, maybe with a few abnormalities that can be easily fixed and Micah will grow up beside his big brother. Matt will be able to play catch with Justin AND with Micah. The brothers will cause me so many gray hairs as they are rambunctiously messing their way through the house, and I will exhaustedly be cleaning, replacing, and repairing at the end of everyday. It's just not going to happen. Justin isn't going to teach Micah how to manipulate mom and get extra dessert. He isn't going to have a normal relationship with his brother and he likely won't have a relationship at all. I won't have to worry about Justin being gentle with his tiny newborn brother, or how I'm going to handle raising two under two.
Watching Justin interact with all the new babies we are blessed to have coming into our lives, saddens be knowing he'd be such an amazing big brother at this age. He points at my belly, says, "bubba" ("Baby Brother" perhaps?) and lifts my shirt trying to expose my bare belly in public so he can hug and kiss my belly. He doesn't understand at only 19 months old, but he loves my belly- even if he doesn't understand what's growing inside of it. He picks up baby dolls at playgroup and hugs and kisses them carrying them around... for a little while before he violently throws them on the floor- he is a toddler boy after all :)
Appointments like today snap me back into my reality that I'm just not going to wake up in July holding my perfectly healthy baby boy. We learned of new anomalies today...
- The good news is that the choroid plexus cysts he had on his brain have already disappeared. They tend to disappear and as I had mentioned when we learned at the last visit- they really don't create any issues for the baby's brain... just pockets full of fluid that typically disappear on their own.
- We were first told that both arms were deformed... then at the last visit it looked like only one was. This visit it does look like both are- but his left is MUCH worse than his right. His little hands are bent inward at the wrist. It appears that his left forearm bone is completely missing. It didn't bother be at first, but it completely devastates me now. Just makes it more real that he really does have problems that make him different than other healthy babies. I am told about other abnormalities, but not being in the medical industry, I can't see them. I know what a normal arm looks like and I can see Micah's is not. I could see one bone and not the other. Seeing the abnormalities with my own eyes means they are real. Not like the other ones where I just trust the doctor to tell me they exist.
- One vessel of his heart is still much larger than the other. The vessels pump blood to and from the heart and one side is working much harder than the other.
- We learned of another heart abnormality very common in T18 babies. Micah has a hole in between two chambers of his heart. This is known as VSD or a Ventricular Septal Defect.
- He is now measuring a week behind.
- His stomach cavity was almost completely empty. Babies swallow and urinate amniotic fluid (recycling it) as a way to practice swallowing and digesting- obviously basic life skills. Micah isn't doing that. Because he isn't doing that, the levels of amniotic fluid in my uterus are very high. They will continue to increase. This is serious because it tricks my body into thinking it's further along in pregnancy. Although I just turned 24 weeks, my body thinks I'm much further along. It's why I've been so uncomfortable and why my belly is so much bigger than when I was pregnant with Justin.
- The increased levels of amniotic fluid mean I'm at high risk for a pre-term pregnancy. As the levels increase, and my body thinks it's further along than it actually is, it may be tricked into going into labor. Bed rest may be the only option to try to prevent this from happening- we aren't there yet, but I can't even imagine what this would be like as my only "day job" is to be Justin's caregiver. He's not in daycare and that's not an expense we'd be able to afford on one salary- especially with our increasing medical bills. Micah's Trisomy 18 would automatically qualify him for Medicaid after a certain time, but that's only when he is born. Nothing retroactively for the increased expenses with this pregnancy.
The thing I'm having the hardest time with is what happened to me at the appointment. I frequently get overheated and always assumed it was just the pregnancy hormones giving me hot flashes. My daily "uniform" is usually a tank top of some sort with a cardigan over top. When I get hot, I take off my cardigan, put my hair up, crank the AC if I'm in the car- even if the outside temperature is freezing, or fan myself with something and it goes away. This time as I felt myself getting hot during the sonogram, I took off my cardigan and tried to cool myself off. The sonographer kept asking if I was ok as I didn't realize how fidgety and shaky I became. Being stubborn, I thought I could convince myself I was fine and ignore how I was feeling, so I always responded with, "yes, I'm ok". All the sudden it was too much and I told her I was starting to feel dizzy and I might be sick. She quickly stopped the sonogram, had me lay on my side, had another nurse get me some water, and got me a basin. Luckily I did not pass out or get sick and after a couple minutes I was ok again. This was before we learned of anything wrong with the baby, and after hearing his perfect heart rate I was still in my temporary euphoria.
It turns out the extra fluid is already affecting me, and depending on my position or the baby's position, my body can be under too much stress and my blood pressure plummets. This would happen regardless of hydration or blood sugar. It's of course not all the time, so I just need to pay attention and address things (try to change positions and take slow, deep breaths) if I feel another episode coming on and I'll be fine.
The reason I'm having such a hard time with this is that I hate admitting defeat or weakness with my body. I'm stubborn with going to the doctor if I hurt myself because I always convince myself my pain is just me being dramatic. When I'm sick, I rarely "milk it" or admit defeat, because I feel like I can pretend nothing is wrong and it usually goes away. This time I couldn't wish it away. I couldn't pretend it wasn't happening. All I wanted was to keep watching my baby wiggle around on the monitor- not have to stop seeing him because I was going to pass out. This is just another hard reminder that I'm not as strong as I think I am. I can't "beat" physical things going on with my body.
Matt is AMAZING with all he does around the house. It's hard watching him do the things I used to do everyday, no problem. I understand that I'm pregnant with a toddler, but I can't accept that as an excuse for myself not being able to keep the house as well-maintained as I used to. I still have three and a half months until my due date and I can't imagine if I'm this uncomfortable now, how much harder it's going to be for me later. I know Matt gets frustrated with all he has to do, but no one is more frustrated than I am. I can't accept that I can't do it all.
As much as I want to keep going, I have to wrap things up. Matt and I are having a last minute escape sans Justin to a National's baseball game tonight :)
I just want this nightmare over. I feel like I physically and mentally can't do it anymore. As much as I want this nightmare to be over- I am not ready to say goodbye to Micah. I just want to be able to hold his body while it's still warm and alive up against my own. I want to be cheek to cheek with him, chest to chest. I want to be able to bond with him in a way that I can't while I'm pregnant. Most importantly- Matt has yet to feel him move and I want him to be able to feel Micah alive- both during pregnancy and after birth.
Micah- words can't express the love I have for you. After Justin I never thought I'd be able to love another child as much as I love him. If love alone could heal you, you'd be the healthiest baby in the world. You're stronger than I'll ever be. Keep fighting, baby boy.
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