You’re Gonna Be OK

A song I’ve been listening to a lot: “You’re Gonna Be Ok” by Jenn Johnson

I know it's all you've got to just be strong

And it's a fight just to keep it together

I know you think that you are too far gone

But hope is never lost

Hope is never lost

Hold on, don't let go

Hold on, don't let go

Just take one step closer

Put one foot in front of the other

You'll get through this

Just follow the light in the darkness

You're gonna be ok

I haven’t posted on here since our last CHOP visit on 6/18, so I figured I would give any updates that we have and how we have been holding up.

After our visit we’ve taken several maternity/family pictures. These are images I will cherish forever. Jim and I plan on taking more as long as the pregnancy keeps progressing as it is. Pictures seriously mean the world to me. I mean Maverick isn’t even two yet and I have at least 20,000 pictures of him (probably more, lol!) Knowing that Waverly most likely won’t survive long after birth (always holding onto hope she does)... I’m trying to do a lifetime a pictures of someone I haven’t physically met yet. That’s such a hard concept to really grasp.

I’ve been finalizing our hospital bags. I realized that Waverly is going to be really fragile when born so a few of the onesies and sleepers I packed for her I most likely won’t be able to use. So we bought more blankets. That was actually a suggestion from the psychologist, just keep her bundled in a blanket that way we don’t have to worry about moving her arms and legs. I have a bag full of memory making items (ink pads, clay molds, journal, ornaments) and keepsakes. I also plan on doing a canvas of our family handprints and I’m still thinking of a craft that Maverick can do and that he will be able to keep.
I’ve been getting anxious over when the time comes to deliver. At our next appointment I will be nearly 35 weeks, so the date we set for either cesarean or induction will be very soon after that. I’ve been starting to stress about being away from Maverick (especially since we live an hour away... more with traffic). So I’ve been thinking of getting a hotel room near the hospital for Maverick that family can alternate watching him as they come to visit. That way he is nearby and can be very involved in this experience. I plan on asking how other families dealt with similar situations involving other children to see if there are other options.
I don’t think Waverly has changed position to head down, but she most definitely moved into another (very uncomfortable) position. I believe she is on an angle now, her head right up against the right side of my rib cage. Based off of ultrasounds, her head was pretty centered in the middle of my rib cage, but I no longer feel a “bulge” right there. So I’m assuming she moved... we’ll know for sure next appointment. Until then, I will struggle going from a sitting to standing position lol.
We had our last local OB-prenatal care appointment on 6/27. Everything checked out fine. My last few visits there have been pleasant, which is nice.
I can’t seem to go to a store or out in public without someone asking questions or making a comment about my pregnant state. I know it’s all good hearted in nature, I always try to cut the conversation short. “Second baby, it’s a girl, due the end of August”. I can handle the conversation as long as they stop after I try to cut the conversation. It’s when they want to continue the conversation, give advice, complain about summer pregnancies, make a comment about having a boy and a girl that I have to hold back tears, and just smile and nod. I sometimes just want to say “yeah, well she’s no expected to live long after birth”... but I don’t like awkward situations so a smile and nod will have to do.
In 9 days we will be going back to CHOP. I’m excited to see Waverly again... I’m not excited about picking a date. This has been such a journey, and it’s a journey (no matter the outcome) that I will continue on for the rest of my life. I’m grateful for the internet and being able to connect to other wonderful mamas who have been in my shoes or are walking this path along me. I’m grateful for the outpouring of support we have been receiving. And I’m grateful that despite the diagnosis, my pregnancy feels normal. I’m not suffering through polyhydramnios, being put on bed rest or any other complications as many moms in similar situations go through. I’ve been able to enjoy this pregnancy and for the most part feel normal. The psychologist at CHOP told me to stay present and don’t keep focusing on the future. Of course the thoughts of what is ahead are always creeping into my mind, but I try my best to fight them off and enjoy each and every second
That’s all for now. I will be posting after our appointment next week. 💗