Fish

Wednesday, May 20, 2015

Two Weeks

Two weeks ago, my son was born. I can't believe how much my life has changed in just two weeks. From taking my glucose test, to "let's check on the baby", to "ok, we need to operate right now", and that was just the first two hours of this life-changing journey. I'm healing well, both physically and emotionally. I get moments of sadness, but I don't cry. I really do feel like the funeral and saying goodbye one last time did give us some closure. Hubbs has the distraction of work, which I hope to go back to next week.

I occasionally think about the things I should be doing, and not the things I'm actually doing. I should be sleep-deprived from night-time feedings. I should be holding and rocking my newborn to sleep. I should be gazing at and getting to know my little man. I'm not doing any of those things because he was taken from me. It's true I think that everyone wishes for more time. In our case, that just would have been incredibly selfish. He was hooked up to a ventilator, had horrible edema, they had to give him blood and blood products so many times just to keep his little body going. I know that letting him go was the best thing we could have done for him.

Still, I miss my baby boy. I'll always wish he was here with us. Two weeks ago our world changed forever, but the earth just keeps on turning.

Monday, May 18, 2015

Closure

My son's funeral was Friday. Hubbs and I were talking about it and we really feel like it gave us some closure. We were able to say farewell to our son, surrounded by supportive friends and family. I still feel an ache in my heart when I wake up in the morning, but I don't weep. I'm able to remember my brief time with my son fondly and I will always treasure those memories. He was a beautiful baby and looked just like his big sister. I generally don't post much on here about my religious beliefs, but I have to believe that I will see my son again. It is simply too cruel to think that everything is just over. He is in a better place, and one day, I will see him again.

We're trying to come up with little ways to remember him. We had a little embroidered lovey/cuddle buddy/blankie kind of thing for him, which we have given to Ducky. I'd made a wooden letter name plaque for him to match Ducky's. We're thinking about adding some picture frames and putting a few of the better photos we have in them and hanging it in the living room.

It's an odd thing recovering from a C-section and not having a newborn with you. I'm actually sad about not having to get up in the middle of the night to feed a crying baby. I miss my big old pregnant belly, even though it didn't get as big as it should have. I kept putting off taking belly pics, so I think the last one I even have is from 16 weeks along.

I'm debating about when to go back to work. Since I just work at a desk, my Dr said I can go back whenever I want. I think I'll definitely ease back in rather than jump in. They gave me an extra 2 weeks of paid time off, which I think I will have used up by the end of this week. Perhaps I'll plan for trying to go back next week. Hubbs said it was helpful for him to go back to work, I'm sure it would be for me as well.

Wednesday, May 13, 2015

One Day

My son would have been a week old today. I'm sure one day, there will be a day where I don't wake up or go to bed sobbing with an ache in my chest and a gaping hole in my heart, but today is not that day.

Monday, May 11, 2015

Mother's Day

I used to hate Mother's Day, mostly due to the terrible relationship I had with my own mother. After Hubbs and I got married, I hated Mother's Day because we were dealing with IF and were told we would never have kids. It was still just a sore subject for me. Last year, I had my first enjoyable Mother's Day. I was finally a mom and it was nice to celebrate. This year was by far the worst Mother's Day ever. Four days before, my son had been born. Two days before, my son had died. The next day, I'd be at the mortuary and cemetery planning his funeral. Hubbs and I got by with some extra cuddles from Ducky and a good cry with each other.

Today wasn't as terrible as I thought it was going to be. We went to Hubbs' work and picked out an absolutely perfect plot. His boss is pulling a few strings for us and we've really gotten a great spot. We met with the mortuary and they were wonderful, apparently they don't charge for infant funerals, and since they know Hubbs, are giving us the casket/vault combo at cost. The service is completely free and they are taking care of everything for us. We went to the monument company recommended by Hubbs' boss, and they're giving us a significant discount, which is great as well. Everyone involved has made planning this a little less painful by taking such good care of us. The funeral will be Friday and I'm hoping it will be short and sweet. Hubbs and I are really hoping to avoid anyone talking to us at all. I just don't want to hear cliches and things that are meant to be helpful but are really just awful. I know people mean well, but sometimes they say stupid things.

I came across these empathy cards on the interwebs, and two of them totally made me laugh out loud, which is impressive considering how ridiculously sad I am. (You can find them here)




Family is going to start trickling in and I'm kind of dreading it, all of the comments and questions. Since we were the only ones who actually got to meet our son, our grief feels private and personal. Having other people share in it when they didn't know him at all feels intrusive in a way. I'm sure it's because they love us and are sad for us, but they definitely can't grasp the depth of our despair. Even at the funeral home, they were talking about how few infant burials they even do and what a rare occasion it is.

I think the worst part is that my milk came in the day after he died. Yes, I'm recovering from surgery, and have a huge line of stitches and an impressive amount of swelling and bruising on my abdomen to remind me... but having leaky boobs is worse. It just reminds me that my baby is supposed to be here with me. I'm supposed to be holding, nurturing, feeding, and getting to know my son. It's just not in the cards for me. I could have tried to pump and donate my milk to a milk bank, but I think it would have been harder. I'm just hoping it dries up as soon as possible. It's hard to hug my daughter and snuggle her before her bedtime with engorged and extremely sore boobs.

Saturday, May 9, 2015

Our Son

We'd known for a few weeks that he had a tumor which would make delivery complicated, but it was difficult to diagnose the full extent of it before he was born. We met with his teams of doctors who would wait until he was born to run further tests.
I'd gone in for my 3-hour glucose test, and realized I hadn't felt him move in a while. I was sent to Labor and Delivery for observation. He had a strong heartbeat, but wasn't moving, and they didn't see the typical accelerations in heart rate that they like to see. They did a Bio-Physical Profile, which he failed. He wasn't taking practice breaths and wasn't moving at all. The tech noticed something on his brain as well, which was not in the scan the week before. The doctors decided he had a better chance outside than in.
My son was born via emergency C-section less than an hour later on 5/6/15 at 1:44pm. He weighed 6.1 lbs and was 16.75 inches long. Extremely big for a 31.5 week old baby. We didn't get to hear him cry, because he wasn't breathing on his own. The NICU team was standing by and was able to stabilize him. We knew because of the tumor, that he would have to be transferred to the large hospital upstate. I was wheeled into the recovery room, and he was rushed off to the NICU. They prepped him for transport and I was able to see and touch him in his little incubator before they took him away on the helicopter.
I spent the next 2 nights in the hospital, very worried, but the staff did a great job keeping me informed. I was discharged on 5/8, a little early, because it was becoming increasingly clear that the situation with our son was very critical.
We were able to go up and visit with him for a while before meeting with his teams of doctors. The tumor made it so that his blood was unable to clot, this lead to a bleed around his brain that they were unable to stop. By the time they were able to have him stable enough to run a CT Scan, the damage was extensive. If our son were to live, he would essentially be comatose for his entire life.
We were given the decision to continue or stop care. We chose to let our son go. We were able to hold him and see him one last time. He passed surrounded by love and his family. He may have only been with us for a short period of time, but he will forever be in our hearts.
The staff at both hospitals were incredibly supportive and took wonderful care of us and our son.
We are making arrangements and the funeral will be sometime this week. In lieu of flowers, please donate to the March of Dimes. We thank everyone for their prayers and support during this time.

Tuesday, May 5, 2015

More Questions

I had hoped that meeting with the specialists today would give us more answers than questions. There weren't really any answers. Basically we heard a lot of "We'll have to wait and see once he's born" but they did outline kind of the best and worst case scenarios for us.
Minimally, Lumpy is looking at a week-long hospital stay. Which is a good thing to know, now we can plan family visits around that. We know that it is unlikely they will start treatment right away unless it becomes obvious that the malformation is causing problems to other body functions/systems.
The main concerns are heart and lung function as well as excess fluid around vital organs. Basically, once he's born, they're going to do a quick once over, and as long as he's breathing normally and is stable, we'll get to hold him, and he'll get to room in with us just like any other baby. It's if he's not handling things well that he'll be straight off to the NICU and who knows when we'll see him. We were prepared for the possibility of shunts and breathing, feeding, and drainage tubes. Apparently anything can make these abnormalities worse or better.
He likely won't need an MRI until he's about a month old, so that will be nice. For now the plan is to keep monitoring him with NST's and ultrasounds. At the first sign of his heart not tolerating things well, or the malformation starting to affect is airway, they'll look into delivering early and possibly planning an EXIT procedure if need be.
The doctors couldn't really give us specifics, it's just the kind of thing where they can only tell so much by ultrasound and really need to see him and run blood tests, ultrasounds on him once he's born, and other tests to get a better picture of his prognosis.
We were kind of saddened to realize that he will have to deal with this for his entire life. It's not something that's really ever going to entirely go away. It's not something that can be cured, it's just a genetic mutation that is just a part of him. It will likely become less noticeable over time, but it will always be there. It might flare up from time to time, and if so then they treat the symptoms, swelling, pain, mobility, etc. We were hoping he'd just have to deal with it for a little while and not forever.
Lumpy's case is apparently unusual enough that the Pediatric ENT is presenting it at some sort of conference next week. I'm not really sure what that involves, especially because he really didn't seem to be able to give us any specifics and hadn't reviewed the ultrasound at all before talking to us. I did feel good about the Neonatologists we met with though. They were very thorough and answered all of our questions as best as they could. They gave us a brief tour of the NICU and really made us feel like they will be able to take great care of Lumpy after he's born.

Monday, May 4, 2015

NST #1

Had my first NST today. It went fine, they made me drink a Dr. Pepper in the middle of it, because Lumpy wasn't having enough accelerations going along with the movement. He, much like his big sister, does not like being monitored.
Hubbs and I have off work tomorrow because we're meeting with the Neonatologist and the Pediatric ENT up at the large university hospital upstate. I'm a little nervous, but hopefully we'll have a lot more answers and fewer questions after the meetings. I'm sure they won't really want to speculate too much and will have to actually get a good look at him after he's born, but ideally we'll at least learn more about his condition.
We're also stopping along the way to pick up our "in the car" stroller. We have a double for our evening walks and long outings, but I wanted something more compact and lightweight for the car everyday. We've decided on the Joovy Caboose Too Ultralight. There will totally be a review, get excited for that. I'll also review the side-by-side double we have once we get to use it, which won't be until Lumpy is at least 3 months old (it doesn't accept infant car seats).
Since the Dr's appointments should realistically only take 2 hours, not including drive time, we're also going to have a little afternoon date to see The Avengers. I am extremely excited about that and shoveling popcorn in my face.
I got the results from my 1hr glucose test finally. Apparently the hospital lab forgot to send it over after I took the test 3 weeks ago. My levels were elevated, so now I have to take the 3hr test. I'm saving that for Wednesday. I just really hope I don't have GD on top of everything else that is going on this pregnancy. I fasted for the 1 hr and that can cause a false positive (or so I've heard), hopefully the 3 hr goes better.