Pregnancy Three: Heart Echo and Another Ultrasound

Here I sit. It's 12:17am, and I just keep staring at this blank screen. Waiting to be filled up with words. Words that I'm trying to get out, that are swirling around my head. Words like "spine", "open heart surgery", "more serious than we originally thought", "tubes", "indefinite"....and I feel like I've slowly started to force myself to become numb.

Backing up. We had another ultrasound scheduled (just like last time) down at the University of Utah Hospital, and this time we also had a heart echo scheduled at the Primary Children's Outpatient Services Building, along with a follow-up meeting the next day (Wednesday) to meet with all the surgeons/teams that will be taking and working with baby girl right after birth. The heart echo and ultrasound were on Tuesday. We drove down Monday after Kevin got off work, slept at my parent's, then took off about 8:30 to make our first appointment at 9:30. We weren't sure what to expect as far as this heart echo was concerned, but it just ended up being another ultrasound, but with specialists that look at, and breathe heart anatomy. After sitting on that bed for 2+ hours, having to go to the bathroom once in the middle, and getting hungry (i had Kevin handing me sour gummy worms the last hour), I...WE were already tired. But the echo ended with Dr Pinto coming in and taking a look around, then she went back with the other ultrasound tech to look over all the images. We went across the hall into a little waiting room during this time. Then Dr Pinto came over to us to tell us what she had found.

Basically, the heart looks great and developed.....for the most part. However, there are two small holes inside that the doctor wasn't too concerned about-she says she's seen those close up pretty quickly/fix themselves at birth. The main thing Dr Pinto is worried about, is that she can't tell if the two pulmonary veins are in the correct spot, leading over to her one (right) lung (see image above, top left). It's just hard to tell right now. If everything goes okay after birth, she will be doing another heart echo directly on baby to take a better and closer look inside her little heart. If those 2 veins are in the wrong spot, then that means she will have to have open heart surgery.

We walked out of there around 11:45. Then went up a floor and to the Primary Children's NICU.Which is where baby girl will get transferred IF they can get her stable enough after birth. I met the super sweet social worker gal there, and another nurse who started us on a tour. She opened about 3 doors and was explaining what they did and how the babies are taken care of, and....I lost it. I could feel myself getting emotional each time she would open a door and I glanced in to see all those sweet little babies on tubes and vents and....ugh I can't even write about this. I guess it became more real seeing where my own baby girl would be staying, that made this all feel more real and hit me like a ton of bricks. So I told her I needed to be done with the tour, and I went to try and calm down in the bathroom.

After a few minutes I was able to collect myself and we walked across the skybridge that connected to the University Hospital, where my next appointment for the ultrasound was. We grabbed a quick lunch in the cafeteria, then headed up to floor 2. It was 1pm. When I got called back, and was sitting down on the bed, this new ultrasound tech started asking all the general questions required. I told her that Dr Byrne had wanted to make this ultrasound be specifically for looking at her face and checking out her lip for any cleft lip possibility or any jaw defects (it not being symmetrical). The tech of course had no notes of this, and was just aware of it being like any other ultrasound-to check her overall growth. That got me frustrated. I know it wasn't her fault and I know they see a billion special cases all day every day, so I bit my tongue and asked her if she knew when Dr Byrne would be back in (she had delivered a baby at 3am that morning).

So the ultrasound proceeded. I was so frustrated and impatient because I wanted her to jump right to looking at her face and ear and lips and jaw. Because there are so many abnormalities inside this baby's body, each new ultrasound tech also takes forever to re look and try to figure out for themselves what is going on. So they take fooooreeeever. It's fine. I get it. It's just boring to me who has seen it all multiple times now. I closed my eyes and even tried to sleep off and on to get myself to relax. I had to pee again in the middle of this ultrasound (how many times can I write that word in here?), and the tech had me walk around and do some moving to try and get baby girl to move into a better position.

Dr Byrne showed up at the end (yaaaay! that made me happy.) and she and the tech tried to get a good look at the facial features. It's so hard now that baby is further along and bigger. There are lots of shadows all over from bones that make it hard to see anything clearly. But we did see the possible skin tag on her right ear, which is a tell tell sign that there may be jaw/cleft lip issues. The weird thing is, is that I showed Dr Byrne a 3D image of her face (from my 20 week anatomy scan) that I happened to have on my phone, and there didn't look to be anything wrong or off with her lips. But there was a lot of fluid around the right side of her face, which could have been hiding a jaw abnormality. Yet another unknown until she is born.

We left the hospital around 3 that day. On the way back to Lehi, we stopped in Draper so Kevin could say hi to his old coworkers and boss (who happens to be my uncle). Random tangent-but I am thankful Kevin is the type of person to keep up with his friendships. Whether it be an elementary school buddy or a past co-worker, he's always so great at keeping in touch with people. I love that about him.

Tuesday night Alair came up to sleep over, and it was fun talking with her late into the night!

Our appointment wasn't until 12:30 on Wednesday, which was soooo nice. We actually got to sleep in a tiny bit. haha! and hang out some more. Kevin and I had planned to take the kids with us this time, so that we could head straight home afterwards. My mom and Alair both wanted to come tag along and thought it would be good to see the hospital + all these other places we had been going to for visits, so they ended up following us up. That made me feel a little better as well - because then they were seeing where I would deliver and where the NICUs were and everything.

12:30 rolled around and we were taken back to a waiting room. Dr Byrne (my OB for Utah-who will be delivering baby girl), Dr Fenton (the surgeon), and Tonya Duke (the Program Coordinator for the Utah Fetal Center, and who is also a Fetal Nurse Practitioner - she's my favorite, and the nicest/coolest girl ever) met with us first. Dr Byrne started by going over the MRI results (from this visit). They weren't good. The baby's spine is looking way worse than they originally thought/saw from all the previous ultrasounds. It looks more severely curved and her clavicle bones are uneven and her rib cage is not even (which might be due from that missing lung. no one knows anything for sure. it's all guesses). Then Dr Fenton took over and told us about what he is seeing as a surgeon. Lots of words were said, I tried to remember them all and take notes...but now my notes aren't making sense....and basically the jist of it is this: He won't be able to do anything until she is showing signs of stability. If she is, then he will go in and try to add a tissue expander, which is like an implant, that will help move things (her heart and stomach) more into their correct and normal placement, just like she had that left lung in there. But there was a lot of worst-case scenarios he told us about too. Lots of talk about if she didn't make it, and how things don't look very good right now. I cried a lot at this point. It was also mentioned that her one lung (the right one that she has), is only at about 33%, and is falling behind on its growth, which is not good.

Then they went out and 2 of the head NICU nurses came in to speak with us, along with Alissa (the super sweet social worker from Primary's NICU). Dr Torr and Dr Zinchan. Dr Torr did all of the talking and explaining. She explained more of what is actually going to happen right after birth. This was super helpful to hear, since I had been wondering for a while. So right after she comes out/is born, they told me I won't be getting really, if any, one-on-one time. Super sad, but the main priority will be assessing her one lung and seeing how well she is or isn't breathing. They'll be trying to get her hooked up on air/ a breathing machine. I'll be delivering in a special room right next to the University Hospital's NICU. They literally pass her safely through a "drive-through" looking window. I'll be able to recover right next door to her while she is there, and they'll be updating me constantly. That part was really reassuring. From there it just depends on a number of factors what happens next. If they are able to get her stable on a breathing machine, and can see that her lung is doing okay, they will transfer her over to the Primary Children's NICU. That's when (i think if i remember right! soooo much information it was overwhelming) I think Dr Pinto will be able to do a heart echo on her heart to take a closer look at those veins to see if they are actually in the correct place, or if she will need surgery. Again, more talk on if baby girl doesn't make it to that point and won't be transferred over. Talk on getting everyone in to see her if she doesn't look like she'll make it or is struggling and they can't do anything to fix her lung and heart....

The last lady we met with was Kelly from a small group inside the hospital called "Rainbow Kids". A palative care team whos mission is to work as an interdisciplinary team to help children (and babies) with chronic illnesses and their families find comfort, support, and hope. They kind of make sure that what we want as a family gets met-spiritual goals and such. Anyways, she was of course so so sweet and nice.

After Kelly left, Tonya came back in to give me a shot of betamethesone, to help with the baby's lung development. First time having a shot in the bum, and it didn't hurt as bad as everyone had hyped it up to be. haha. i get another follow-up shot tomorrow (the day after) at Seasons.

Yeah. So this picture might not be what you were expecting to see from that day. But here we are in between people coming into our "waiting" room. Between me crying and getting all emotional over all this death talk, and Kevin trying to cheer me up. He really is such a strength for me through all of this. He was trying really hard to make me laugh, and it was working. At this point, I will take laughing over crying. We watched some funny videos of Bronx playing soccer, and Tinley bustin out her little dance moves. Seeing how healthy they are and how strong they are....it makes me so happy. 

I just want that for this little girl! I want to keep her! I want to be her mom NOW on this earth! I want her to live and defy all odds and come out totally healthy and strong. I want to wake up and realize this is just a stupid messed up nightmare I am having, and birth a healthy baby I can cuddle with immediately, who can breath and doesn't have to be hooked to a million different tubes. I don't want her to be in pain! All you mommy friends out there who just had your baby, or who are about to have your baby... oh please hug them that much tighter for me! I already envy that you get to enjoy and savor that moment....because I've been told they don't know when I will be able to hold her (the tubes she'll most likely have put in to help her, will be too stiff at first to move her/hold her). So kiss those sweet newborn cheeks and hold them so close for me! 

The drive home I tried to sleep and just force myself to be numb to every emotion I was having. I didn't want to think about the situation more....but of course that's ALL my mind was doing. Racing through every scenario. If she does stabilize: where I was going to be staying to be close to her (the Ronald McDonald house in SLC, 2 miles from the hospital), where Bronx and Tinley will be (my parent's house, Lehi), where Kevin will be (our home, in Rexburg, working, driving down when he can). How I don't want Bronx and Tinley to feel neglected by me, and how am I going to split my time between them and the baby? since I will most likely want to be up there by her as much as I possibly can....but like Kevin keeps reminding me: I know I can't think too far ahead. We literally have to take it one day at a time, and when she arrives, one hour at a time. 

I know Heavenly Father has a plan for this sweet baby girl. It most likely isn't my perfect plan, or the one I dreamed up my whole life, but I trust Him. That certainly doesn't make the pain less...but it does create more peace in my heart. Throughout the days my mind always wander to this topic, and I tend to get teary eyed a lot. I like to repeat to myself: It's going to be okay. Everything will work out how it's supposed to. It's going to be okay....

update: I forgot to add some important info! Dr Byrne came in at the very very end and we scheduled one more vitals checkup/ultrasound for Thursday Oct 20th. And we scheduled my induction date for Thursday November 3rd at 8pm! woo! so that's exciting.

We will plan to go down to stay (the kids and i) then on October 18th or 19th (which is my 36th week) . Most likely will drive down Tuesday night or even Wednesday morning after Bronx's Preschool, then hit that appt on Thursday and Kevin will drive home after so he can go back to work. I think that one of my biggest fears is going into labor before that induction date (on my 38 week mark), and not having Kevin get there in time, or having all the right people on staff when she comes!