Ureterostomy Update

Hello from the other side! We made it through surgery, praise be.

Ureterostomy Day!

Temen’s ureterostomy was originally scheduled for April 9, but after spiking a 103.6F fever the night beforehand, it was postponed to this last Monday, April 16. We spent the entire week quarantined trying to get her healthy enough for surgery, it was nerve-wracking but ultimately worth it because she was cleared for surgery Monday morning!

Her surgery was at 10AM with a 8:30AM check-in time. Unfortunately babies can’t have breastmilk for the four hours before check-in, so that meant that her last nursing session was at 4:30AM. I can’t even describe how hard it was to not be able to nurse her every time she frustratedly pounded her head or hand against my chest. It was emotionally and physically taxing to not be able to nurse my exclusively breastfed baby.

But… not as difficult as it was to hand my baby to a man I have met once, only for her to be brought to a man I have met five or six times … to be cut open. We were given the option to walk her to the doors where scrubs are then required, which we of course did. Then the anesthesiologist looked at us like “okay, hand me your child”. I mean, we’re expected to just hand our child over and walk away like everything is okay. It was hard, and felt unnatural. I thought I was doing a great job hiding my feelings, but as soon as I turned around a nurse stopped me and told me to breathe. I thought she was just being nice, so I smiled, said thank you, and kept walking. That obviously didn’t satisfy her because she stopped me, put her hand on my shoulder, looked me in the eyes and said “no, seriously, breathe, let it out.” Cue the water works.

Surgery actually started at 11:05AM and took about an hour and a half. The surgeon was going to try to reattach the ureter if things looked okay when he was in there, but he wasn’t able to. So he did the ureterostomy and fixed a small defect in her bladder. Surgery seemed unremarkable when we were speaking with him afterwards, which was comforting.

What was not comforting was the extra long wait after she was out. A couple of nurses nonchalantly made comments about how she was taking a little longer to wake up. One told us that sometimes if they are in recovery during their nap time they’ll just keep sleeping through it. That still makes zero sense to me, but, that’s what Temen seemed to do. Once we were able to go back to see her she looked so groggy and so confused. Her cry was harsh and heartbreaking, and she had exactly five cords hanging off of her body that made it difficult to hold her without a nurse’s help.

Temen was fussy for all of about ten or fifteen minutes before she fell asleep again. And, she slept for the rest of the day until the next morning with a few random wakes in between that lasted no more than five minutes each time. She didn’t nurse all day until 3:30AM the next day, but she was comfortable and that’s all that mattered.

The Next Day

The next morning she was groggy for a while, but I think it was like 10AM when we had our girl back and better than ever. She was so happy! I have not seen her so happy in her short ten months on this Earth with me. I know that the doctor said that she wasn’t in pain before, and I trust him, but I do think that there was some level of discomfort happening. It is now Thursday, and she is still happier than we have ever seen her.

We were given surprisingly little direction for how to care for her stoma, so I thought I would write some of that in here for anyone who is googling and happens to come across this:

Caring for her stoma

Temen’s stoma is in the middle of her lower belly, without a bag. She has two incisions on either side of it, and the stoma itself is probably about a centimeter wide today (three days post op). Each incision has glue on top of it that’s a purple shade, making her look bruised up.

We were told the stoma would drain directly into her diaper, but that we may need to turn her diaper around so the longer part is in the front. All of this is true, so long as she’s sitting upright or laying on her back. If she moves at all, or sleeps on her side, urine leaks out of the side of the diaper. Temen is an active baby, so I went to Target and got the longest pads I could find. I now affix one to the front of the diaper, and it wraps around her waist. Since doing this, we haven’t had any leaks.

Cleaning her stoma during diaper changes was pretty intimidating at first. That hole is a direct shot to her kidney, so it makes sense that you’d want to be careful not to get crap in it. You also want to be careful to keep the skin around it clean to avoid a yeast infection. But, as soon as you dab it clean, urine comes out! (She can’t help it.) Now, when changing her diaper I put a cotton pad on her stoma while I wipe her down and change/assemble her diaper. The cotton pad soaks up any urine and keeps it from getting all over her. Once everything is put together, I keep the cotton pad on the stoma and clean the surrounding skin. I then take another cotton pad and put a super small bit of bacitracin on it, dry off the stoma, and quickly dab it with bacitracin before closing the diaper creation. It’s an ordeal, but we don’t use bacitracin every change. (Should I just do a post on this alone? Maybe.)

She can be bathed as per usual.

Follow Up

Temen will be checking in with her urologist in about a month for an ultrasound and follow up visit. She also has an appointment with her nephrologist later this month to check in on her sodium issues.

I still have the next four weeks off with Temen, and am looking forward to spending time with her without all of the anxiety of surgery and keeping her well enough for the upcoming surgery!

 

Well, that’s all I have folks!

xxoo,

Samm