May 4th, Friday
Children's Hosp.
Kayla came to the Children's very ill, very lethargic. Her stomach was very distended, her jaundice kind of ran amuck and needed to be under phototherapy. Her liver mass was discovered to be multicystic instead of one large mass, and they couldn't do a biopsy until they were sure she didn't have an infection. They held off doing it until they knew more. By 24 hours, she was doing 90% better, her eyes were wide open, she was active and feisty. They nicknamed her Ginger because she has strawberry blonde hair with red highlights. The plan is to keep her on antibiotics for 2 weeks at this time. We were told that once the results come back she will likely be sent back to the original hospital. They did a lumbar puncture on her today.
May 5th, Saturday
Children's Hosp.
Kayla looks like a whole different baby today, so spry and happy. Something they are doing is working. Her tummy, though the same size, has shrunk a lot, it just looks better and less large. Restarted her feeds after 3 days NPO.
May 6th, Sunday
Foothills Hosp.
Kayla got transferred to the level 3 NICU at the Foot, which is where I did NOT want her to be, I have heard a lot of bad things about them, how they ignore the babies and how they never listen to the parents. So here is went in with a bad attitude, and they really didn't listen to me at first. I ended up having to call Patient relations and speaking to someone who could relay our "wishes" to the nurses. My parents came to visit her today, my dad, who is a 6 foot 5, 220lb man, held her, he looks like a giant next to her. His pointer finger is the same size as her entire arm, it was very surreal. Kayla is doing well today. We got no news or anything from her. Ran out of breastmilk, my body is no longer producing it.
May 7th, Monday
Kayla had a heart echo done today instead of her liver ultrasound, and I went apeshit crazy. No one would tell me why she had it done, or why they didn't do the liver u/s. I was spending the day with a girlfriend, trying to distract myself after such a stressful weekend while Chris went up and spent the day with her. No one would give him answers. So we ended up going later at night to discuss what the crap was going on. Turns out that the Echo was necessary, and they new it from the time she had her first assessment at intake, but no one would tell me why. She has a triscuspid valve defect, which is a birth defect, meaning sometimes she has a heart murmur, and some times she doesn't. The valve, that would normally open in three places, only opens in two because one of the flaps never separated. Apparently 15% of the population has it and normally live their entire lives without even knowing about it until they are in their 90's. She will need to follow up with a cardiologist throughout her life, but it doesn't affect her while in her current state.
Liver ultrasound booked for tomorrow. Her blood cultures came back normal, but her spinal tap came back with heightened white cells, the Neonatologist said it was normal for her since she is a preemie, but the infectious disease team thinks she needs to be treated for meningitis. But the neo said she will be on the same course of antibiotics for a longer duration anyway, so it will be dealt with as it is. They have decided to do a 6 week course of in hospital antibiotics, so we are in it for the long haul. When she started her antibiotics is where they count it from, so she has just over 6 weeks.
May 8th, Tuesday
Had a very long chat with the Neonatologist today. No news is good new. Getting her ultrasound results back tomorrow. She is over her birth weight today. She was originally 4lbs 5oz (they said 4lbs 7oz but weighed her with all her equipment on). And she is now back to 4lbs 5oz.
May 9th, Wednesday.
Liver ultrasound showed no real change, but she is getting better. They decided against doing a biopsy at this time and to just wait and see what the cysts are going to do. I think he said they will just keep monitoring it. I feel great about this at this time, good thing, she doesn't have to be put under or anything. Bad thing, its still multicystic and could harbour infection.
May 10th, Thursday
Baby girl is 2 weeks old today!
I was luckily enough to be there for rounds today, where all of the doctors meet and discuss your baby. There is no change, but she has been knocked down to only 2 antibiotics instead of 3 since her blood cultures were clean. She has a PIC line, which is a central line placed through her arm because her IVs keep blowing. They are going to do intermittent ultrasounds to keep an eye on her liver and see what happens. Waiting on whether they are going transfer her or not, but we aren't holding our breath.
No comments:
Post a Comment