Thursday 24 May 2012

NICU Week 4- 3 more weeks to go

It has been pretty uneventful lately. Kayla is doing very well. She was transferred to the PLC hospital, which is a LOT closer, and we are much more used to what goes on here, the nurses, the procedures. Kayla's mass seems to be shrinking, so she is still on antibiotics. The doctor was hopeful that she wouldn't have to be on the antibiotics for the full 6 weeks, but after consulting with the CDC again, they are going to continue them for the full course. I am fine with that, as we were in it for the long haul anyway, but I really do wish she was home. She keeps growing. She is about 5lbs 2oz, and grew 1 cm over night a few days ago, she just feels larger and longer. She is eating really well, up to 80mls a feed now, which is so awesome considering she was barely eating last week. We are pretty stress free right now, as far as Kayla is concerned anyway. 3 more weeks to go.





Thursday 17 May 2012

NICU Week 3

Not a heck of a lot went on this week.
Kayla may have brown eyes, although they are blue, as all newborns eyes are, she seems to have a brown or light brown hazel behind her blue hue. She has been awake a lot more and more active. She has been weaned from her TPN, which is basically food they give you through IV because she has been taking bottles really well. She does have problems with pacing her feeds and gulps them down like crazy and ends up having bradicardia, so you have to continue to take the bottle out of her mouth. She does seem eager to eat, but keeps falling asleep half-way through. She is doing well though. She currently weighs 2177grams, which is nearly 5lbs, but she has lost a little weight because she is tireing herself out so much while eating. She had an ultrasound on Tuesday for her liver, and her masses seem to have shrunk a little, and her blood work came back with lower liver enzyme levels, which is great, it means the antibiotics are working. They moved her from a "k-bed, or joey bed" which is made to hold a warming pad, and is now in a newborn cot, which is what they put them in when they are term babies, she also had her NG tube taken out of her nose, due to bottle feeding. She had a central line in her arm called a PIC line but it became inflammed and formed a fluid bubble, and also moved 2cms, so they had to take it out, and each attempt to put a new line in, but her veins keep collapsing. We were hoping to get her transfered to our local hospital (PLC) but they can't move her until she gets her new PIC line put in. Hopefully we will have her moved tomorrow, Friday at the latest.
She is doing really well. We have about 4 weeks left of hospital antibiotics, so still a bit of time.





Thursday 10 May 2012

NICU week 2.

My newborn is well traveled, for her first week of life. She got to ride in a helicopter to the Children's hospital, which is within the city, but because she was considered critical they decided to take her that way.

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.









Friday 4 May 2012

Holy Crap?! What?!!

So, we hit a setback. Yesterday was much better then today, but holy goodness, it has been kinda scary and such. Kayla has a mass of cysts on her liver, caused from her "uvc" which is an umbilical vein catheter, like a central line IV where it goes directly into her. Anyhow, the catheter was in the wrong spot, it wasn't placed in the wrong spot, but had moved over many times over the week, and caused fluid to build up on and within the liver. Yesterday she was lethargic, has a massively distended stomach, threw up everything she ate, slept, turned yellow like jaundice. She was put on 3 different antibiotics, put on fluid only diet (tpn) and put under the photo therapy light for 24 hours and she was shipped off to the Children's Hospital. It was very scary, I cried and cried and cried for hours.
Today she is much better, she is pink again, she is alert and opens her eyes. She is crying again, acting hungry and just looks so much healthier. Her tummy is still quite descended, and the poor girl had a spinal tap today, but tolerated it very well. The plan is to keep her on the IV antibiotics for two weeks, check out the masses this Monday to see if it shrinks, and if it does she will be sent back to our hospital to continue her antibiotics. It doesn't seem so bad now, as i write it, but as I went through it yesterday, I just fell right apart. For now she is fine though

.

Wednesday 2 May 2012

N.I.C.U Week 1

Day 1
April 26th Thursday
Kayla is born. When Kayla was first born she was breathing, she came out kicking and screaming, it was a glorious noise to hear, since Isaac didn't cry when he was born. There was such a mad panic that Chris didn't get to cut the cord, but he did get to be right there while they whisked her away to the nicu. He was more worried about me at this point though, as we were both anticipating me to hemorrage after birth, however, we were lucky and my placenta came out intact and there was very minimal bleeding (Thank the Lord).
I got to see Kayla at around 5:30pm, 3 hours after she was born. They had a lot of stabalizing to do that can be very overwhelming to the parents, so they asked us to stay away, plus I had to wait for the epidural to wear off so I could feel my butt and legs again.
I learned all kinds of things, what a c-pap was (sipap) its a gentle support for assisted breathing. She had a tiny little triangle on her nose, and this hat that had this big tube on it. She was on 4ltrs of 21% oxygen, which is essentially room air. She had an IV in her hand and wires coming from every which way. Her blood gasses are no good.
Isaac got to meet her today, he is very upset that she has to stay, but so does mommy, and hes quite upset about that too.



Day 2
April 27th Friday
Kayla was having a really difficult time breathing, so her doctor decided to add sufactant to her lungs to help her produce her own. Within a few hours she was doing 90% better. Throughout the night though she kept having apnea spells and was bradycardic. They were very worried about her at first until they spoke with the doctor who made the connection that since they gave her morphine she was having a hard time coming out of it. So they gave her a dose of caffine and Narcan to reverse the effects, she had one more episode of apnea, then she was fine in that department. She is taking milk through a guavage tube (g-tube) which is better then just fluids. While she was getting her treatment for the sufactant they placed an umbilical arterial catheter, which is a central line, but instead of being placed in the neck is placed through the umbilical artery. Its kind of neat, where they place it about 8 cm within the body and close to the heart, they also placed an IV catheter in the vein of her belly button. They have to stitch it up, and I just found it to be very neat. Anyhow, they told us they were removing it tomorrow so we could hold her hopefully. Chris got to hold her during his visit that night, just on his lap with the uva and the cpap on still and she opened her eyes for the first time. I started pumping for breast milk. I had originally intended on formula only feeding, but after chatting with the doctor and the LLC I felt that I could try my best to do what I could to get her milk. So far, its been very painful and very hard to get anything as my milk has not come in yet. Isaac touched Kayla's hand today. My parents went to see her today.
Le


Day 3
April 28th Saturday
They transitioned Kayla onto oxygen 1 ltr today from the 4ltr, and she is still on room air. They moved her from her emergency critical care room and bed to a joey bed with a warming pad in it, but she is maintaining her own temprature. I got to hold her today, and in that my milk came in, hahaha. I got to hold her to my chest and cuddle for about 45 mins. It was an amazing feeling, having the ability to hold her, to cuddle her, smell her for the first time, feel her, listen to her breathe. I felt to relieved and eased to be able to feel her. I am not sleeping well yet, still only getting 4 hours of sleep. I am doing well though. Chris got to cuddle with her today too.


Day 4.
April 29th. Sunday
Kayla is on the bottle, as well as the g-tube, trying to get used to eating. She also took her soother for the first time today. Still on room air push oxygen. She was put under a phototherapy ight tonight because of her billiruben levels. Just a little jaundice.



Day 5
April 30th Monday
They took her off oxygen today, so she is breathing room air alone now, she is doing really well. Mom and dad got lots of cuddles today. Isaac even got a closer look at her today and touched her head. We got to feed her for the first time today from a bottle. She seems to be a daddy's girl as every time he speaks she opens her eyes. Also got to see her face and head for the first time without all the focus on her prongs. She has light blonde kinky hair, so it looks like it is going to be curly just like mine.




Day 6
May 1st Tuesday
Nothing really to report today, she is doing the same today. She is having some slight issues with tolerating her feeds. Plus, I am only producing 50 mls a feed. Feeling might discouraged about it. Spend a lot of the night cleaning up her room and seperating all of her baby clothes, thinking she could get away with newborn/0-3 and 3 months, had to redo all the processing I had already done and just pulled out all the newborn 5-7lb clothes. She wears preemie clothes in the nicu and they swim on her, haha. Chris's mom went to see her today and held her today. While here also, friends of ours went into labor with twin boys, and Kayla welcomed her first friends ever, haha. We share the unit.


Day 7
May 2nd Tuesday
Had a busy busy day today. I went in early today to be there for her morning feed and Chris had an appointment in the afternoon, so I wanted to get my time with her. Isaac is feeling the stress and lack of attention. He had a night terror the night before and woke up this morning at 6am. His eyes were very purple. He was also very arguable all day today, poor guy. Kayla got her g-tube taken out, but this think they may have to put it back in as she is being upped feeds as she tolerates them, and as she is gaininng weight, so they want her at..I think its 120 mils a day, it was at 96 and she was having a hard time with that. Slow and steady. I fed her a bottle this morning, and the nurse needed to help me because she was just not interested, it turned out she tired herself out because the nipple was not working properly. We ended up chaning the nipple 3 times before she took it, she finally ate all of it. When we left she ended up having her 2:00 feed with a tube because they wanted her to be awake for when I got there at 5. She had been progressivly turning neon yellow through-out the day so as her billiruben went up the more tired she got. The feeding at 5 she was gung ho to eat 5 mls, but then she ate nothing else, so after some frustration and her intense crying fit (which is far better and tolerable then a 3 year olds meltdown, haha) The nurse retubed her just for the feed. I am assuming she will be put back on the g-tube and back into the jaundice bed tonight. The doctor seems to think she is doing well though. Her eldest brother, my first born, came to see her today with his parents. It was very nice to see him and to share his sister with him, and Isaac was really excited to see him. Isaac melted down because he was sooo sad when Nicholas had to leave. It took me holding his hand the entire was home to calm him down, where he fell asleep. Hopefully tomorrow will be less eventful. I need to do something with Isaac tomorrow. Can't believe a week went by, wow. Let the volunteer hold her today.