Thursday, April 18 was the day before my scheduled c-section at 35 weeks. I had planned to rest up to be ready for delivery the next morning at 6 am, but when I started feeling consistent cramping around 7 pm, I asked to be put on the monitors and, sure enough, I was having contractions every three to four minutes.
The OB on call came in and said given the vasa previa and velamentous cord insertion risk, which was why I had been in the hospital for 30 days, there was no reason to wait the nine hours for my scheduled surgery.
The delivery went well and our vasa previa survivor, Lola Judy Olsen, made it out safely at 9:10 pm on Maundy Thursday, April 18. She was 4 pounds, 12 ounces and 17 ¾ inches. She is named after her Grandma Judy Olsen, who passed away on Maundy Thursday in 2002.
Because Lola had fluid in her lungs, the NICU team immediately whisked her away to the NICU and Nate went with her while they finished sewing me back up. It was agonizing not being able to go see her for six hours after delivery while I was being monitored, and even harder not being able to hold her and really see what she looked like once they did get me up and wheel me down there, since she was in the incubator and wearing a CPAP mask.
By Sunday she had the CPAP mask removed, had the NG feeding tube from her mouth replaced with an NG tube in her nose, and had weaned out of the incubator and into a crib and we were in great spirits, happy with her progress and the thought of going home soon.
Monday was a rough day, though, mostly because she had five apnea episodes, which were terrifying. She had also been losing weight each day, her heart rate was low all day, and we found out that a component of her white blood cells, called ANC, was low. Because of all of this, she was placed back in the incubator and started doing more feedings through her NG tube, as she was just too exhausted and stalled with bottle feeding.
On Tuesday the lab work showed that her ANC had dropped even further, and again on Wednesday. There was no evidence of infection, but she was at a greater risk of infection, so she was placed in isolation. Nate and I had to wear gloves when we touched or held her, nurses had to suit up when they came in to take care of her, and no visitors were allowed.
On Wednesday, she was given an infusion of the same drug that I used to have the day after my chemo infusions called Neupogen, which helps the bone marrow build its white blood cell count. We were thrilled to see on Thursday that her count finally rose instead of dropped. She also finally had gained weight.
On Friday morning, she had again gained weight and had a second infusion of Neupogen, but she started struggling throughout the afternoon and evening to keep the formula down, especially with the tube feedings. They adjusted her NG tube and I ended up holding her upright most of the night, or if we put her in the isolette, she was elevated and on her tummy.
This morning her weight was almost back up to her birth weight, at 4 lbs, 10.8 oz. and she hasn’t spit up anymore but has had some fussy spells and just seems uncomfortable, so we’re thinking she is having some reflux still. They have spread her tube feedings over an hour, which so far has helped. Hopefully tomorrow she will be weaned out of the incubator and in a crib around 11 am.
HEADS UP: placenta photo.
Nate and I have been taking rotating 24-hour shifts as we don’t want her to be alone, but he will likely go back to work this week, and I’m not sure if I’ll be able to sustain being here the whole time. We are both starting to tire out. I can say that I have been grateful for being able to go home a few nights to see Finn and sleep in our bed after being away from home for a month, but I have to admit that I’m starting to feel blue that we didn’t just get to bring our baby home a week ago when I was discharged, after everything else that has been so difficult along the way. I have to remind myself that all that matters is that Lola is here and healthy, but I would much rather have her healthy at home so we could all be together, eat a meal together, and go back to normal life after the long hospital stay. I think I wouldn’t be feeling so down had I been home these last 30 days before delivery, but it’s starting to feel like I’m never going to leave Sanford, and while their caramel rolls can’t be beat, they just can’t compete with being at home enjoying our baby.
The steps to go home include being on room air, which she is (yay!); being out of the incubator and in a crib, which we hope for tomorrow; doing full bottle feedings, and five days in a row without any apnea events. These last two are the greatest challenges for her as of now, and my greatest prayer requests. We know we will likely be here for at least another week, if not longer.
We appreciate everyone reaching out to see how she is doing, and apologize that it often takes a while to respond, as our days and nights here are full. I will try to update here again when anything changes. Please continue to pray for sweet little Lola, that she continue to make progress toward going home, as we are obviously ready to be home with her, but know we can’t and wouldn’t want to until she is ready.