Tuesday, May 31, 2011
What...?
Ellie is doing well. She's still struggling with finding enough energy to feed, so she occasionally gets in a full feed at the breast, and more often does half a feed, every other feed, by bottle, with a ng tube top-up. Her weight gain is great, she's up to 2100 grams, or 4lb 10oz!
Today, the doctor came in and told us that "she has 46 chromosomes, and she's female". Apparently, behind my back, they were testing her for Down Syndrome. According to the doctor, although he didn't agree, his colleagues thought that Ellie had Down Syndrome. I'll be honest, the thought crossed my mind on more than one occasion, and my internet search history will attest to it, but I never thought to mention it, since no one else had brought it up. I was relieved to hear she is chromosomally normal, but really... they should have at least told me it was a possibility!!! I HATE SURPRISES.
It took three weeks for the test results to come back, and he told me that since he didn't believe she had the syndrome, but that he was obligated to follow-up on it since his doctor friends were sure she had it, he didn't want to stress me out.
Not sure if I would have been stressed out about it, maybe... maybe not. We won't know. The one thing that does stress me out is having an experience, now, where they haven't been forthcoming with information.
Today, the nurse thought maybe Ellie would be home in 2-4 weeks. Who knows, I've stopped guessing, it'll happen when it happens.
Sunday, May 29, 2011
I woke up to Jakob singing me Happy Birthday at 7am, a little earlier than I would have liked, but so cute.
We had breakfast with my mom (chocolate croissants-yum!!) I talked to my dad, my brother and Beth <3.
Then we took the bus (mom, Jake and I) downtown. We played at emery barnes park, had lunch at tim horton's, then walked up to the hospital. I got some great photos I need to print/post!
I just pumped, I am watching Calendar Girls in 10 minute segments, it is so funny! Now, I pulled two chairs together, and I am snuggling my sweet baby. God, I love her.
Jason is going to pick me up, then we are going home for cake and champagne. We're going out to dinner, then home home.
This time next year, this will all be a distant memory.
Saturday, May 28, 2011
Jake is coming down to the hospital today. My mom's going to lunch, so we are having a mom-son date. Going to get lunch, then skytrain home. If he isn't snotty, I am going to try to get him to hold Ellie.
I am frustrated with this journey. The rain doesn't help.
Ah, I forgot I started this post! The hazards of writing on transit!
Ellie did grow, up to 2022g! Let's hope she doesn't go below two kilos again. Jake arrived, was bright eyed and snot-free, so he held her! He was so excited, but when he actually held her, he panicked. She is so small, he was scared of hurting her. He is such a cutie.
I do have pictures, and intend to post them tomorrow when I am home again.
Last night, it took 45 minutes again, but Ellie took a full bottle. Today, she got 11mls by breast, and a top up by ng tube. She was so awake, that I unhooked her from the monitors and took her for a tour around the nursery before her feed. She is getting big! But, so many babies come and go, and we are still here. Patience is hard to come by when other babies, only 33 weekers, get to go home after a week, and our 32 weeker is still there, with no jail-break date in sight.
One concern is car seat specifications. She could very well be discharged at below 5lbs, she is 4lb7oz now. A set of parents has to buy another car seat because their son is too small for the seat, but ready to go home.
Its hard not being jealous. That baby and Ellie had the same due date week. Only, he was 34 weeks when he was born. What a difference 12 days makes. Today they're the same size, and he is going home. Even the 32 weeker that came in two weeks ago is taking 45ml by breast each feed!!! She is going home on Tuesday.
The twins are going home next week, the poor withdrawal babe is being tranfered to Children's and then it is going to be Khloe and Ellie again, plus whichever newbies we get. She is on her own schedule, I have to remember that.
Thursday, May 26, 2011
Sigh, just another thing I never ever questionned with jake, that I question now. Having a preemie has erased the instinctual sense of knowing what my baby needs.
the past five weeks? How many trips have I made back and forth, back and forth, from the apartment, to the hospital, home. Too many, and not enough. I am so ready to be done with our nicu journey.
Perspective is a funny thing. At Children's, Ellie was one of the healthiest there. At St. Paul's one of the sickest. For a baby the size of a 33 weeker, she is doing really well. it's funny, she is five weeks old, gestationally she is 37 weeks, but for all intents and purposes, they are treating her like she is 33 weeks. She does all the things you would expect of a 33 weeker. I wonder when she will catch up. In due time, I suppose. When she is good and ready.
I have a little doll :) when she comes home, away from the monitors, the alarms, the bells and whistles of the nicu, I think we will see for real how little she is. I was looking at our Moses basket, the one Jakob outgrew at a month old, it is bigger than the bassinette she is in at the hospital. Perspective... her crib is going to swallow her!
When jakob was born, we coslept from the start. I won't do that with her. For starters, she is way, way too small, and I honestly think we would smush her. There's also the bonus, that she is on an established sleep and eat schedule. Feeds every three hours, sleep in between. She is snuggled before and during feeds, left alone between them. I like that. We will use her beautiful room, ill sleep in the room beside her.
For one feed between midnight and morning, I can definitely sit up!
Little Miss is great at nursing. She isn't so great at bottle feeding. Grumble, grumble.
Last night she took 10mls by bottle, 20 by ng tube. During the day yesterday, it was 5 and 25. How can she be so awesome at breast and not the "easy" way?
I don't know what to expect. She has to take 100 percent of her feeds by mouth. I can't be here round the clock.
So, my revised homecoming goal is June 6th, Jay's first day of holidays.
Wednesday, May 25, 2011
20mls!
They say with 3hrs between feeds, she will be awake more, and more alert. She handled the switch to q3s really well. Extremely well, if you remember this little nugget used to desat pretty severly during feeds. Ah, she is doing so well *proud mommy grin*
I'm trying to figure out a new schedule to work around this feeding schedule. She feeds at 1130, 230, 530 and 830. I think I'll be there for 1130 and 830. That way, I am still there for Jakob's nap and bed times.
When Jay is off next, I want to be there all day long. My goal all along was to have her home for my birthday. That is Sunday... seems unlikely she will be home in five days, but, hey! Never say never.
What am I going to do when I don't have somewhere to walk to every day?
I just fed Ellie by boob again. Goodness, she is a champ! They have also, finally, discontinued the pump feeds in favour for gravity feeds!
Breastfeeding knocks her out, it takes so much energy!!
Tuesday, May 24, 2011
She is breathing on her own, weighs enough, maintains her temp consistently, and is just missing the feeding. She said she is starting bottles tonight. Omg! I know it won't happen overnight, but she has to take all feeds by mouth for 48 hours. That could be this week!
TERM
She seems to have gotten the picture. I just fed her all by boob, no top up!!!! Milk was literally coming out her nose.
Tonight they're going to start with bottles, and stop pump feeds for gravity feeds instead. Amazing. I think a lot depends on how much I am willing to push her.
She is amazing. 2008 grams :)
She's stopped desatting during feeds so they're moving her to q3 feeds (every three hours). Things are wonky today as she transitions, they're doing it over 18 hours, to ease her into the bigger per feed volume.
She is getting so big!! Not sure how long she is, but she is almost 2000 grams!
After the q3 feeds, we move to bottles, hoping to ditch the ng tube. Ah, I want her HOME.
Saturday, May 21, 2011
One thing our nurse today was saying, is that Ellie acts like a 32 weeker. All along there was that debate, while I was pregnant, and confusion to go with it, that at a certain point she was 4 weeks behind. I remember us having to get to 28 weeks for her to stand a chance, not just 24 weeks, like normal babies. With all the commotion of her birth, I had forgotten about it, and was feeling down about a lot of it, especially since she doesn't do what other 36 weekers are doing. When Crystal mentioned that E is right on track for a 32-33 weeker, it jogged my memory. It explains her size and everything she does. Yes, she was born at 32 weeks, but the size of a 28 weeker. The only thing not affected were her lungs, everything else just needs to catch up.
Instead of comparing her to other 36 weekers, all I have to do is remember she's still small, and doing amazing for her size. She is who she is :)
I am there for the 12, 2, 4 and 6 feeds. Will try breastfeeding at all of those. Hoping jason can come see us today before work, and I am going home tonight to have a night with Jakob.
Well... instead of the feed at 12, I got to snuggle her tube free for an hour, while they got her open crib ready!!!!!! Amazing. She's already settled in, and so happy. Satting at 94 right now, on room air.
Mastitis
I battled thrush with Jake, but never this. He was pro at draining both breasts.
All I can say is, hurry up Ellie, learn to breastfeed already! Oh, and OWWWWWWW.
Friday, May 20, 2011
I am sitting here, snuggling the most beautiful little girl I have ever seen, relieved that her ultrasound came back normal, she has grown well, she's breathing room air, and tomorrow they're going to move her to a big crib.
May long weekend has been significant to me for the past five years. Five years ago, on Saturday of the may long weekend, Jason and I were at the top of Grouse mountain, and he asked me to marry him.
Back then, I was rebellious, fiercly independent and determined never to rely on others for things I should be able to handle myself. I was very reserved, and cold with my emotions.
Three years ago, on Saturday of the May long weekend, we were married, on the hottest day of the year (a record breaker!), in front of family and friends. I was so different from two years prior, warmer, more open and unbelievably excited to embark on our adventure of a life together. In the three years since, Jakob joined us, Jay started work, we bought a house, Jay got hurt, he was off work, went back to work, I started SusieCues, and all of this Ellie stuff happened. This year, I won't have my boys with me, but I will have the whole day with my girl <3.
My mother always says, I don't make life easy for myself, and there are oftentimes struggles, but I alwyas land on my feet.
I am really hoping for answers today.
Checking in, the reg lady asked if I was new. I laughed and said, no, I'm postpartum, this is my last appointment. She said that I didn't look like I could possibly be postpartum. I know that's a compliment, but... it hurts my heart to know I should be pregnant, huge and uncomfortable, not skinnier than before I got pregnant, and looking like I didn't have a baby. At least ellie is okay.
Aww... I saw Sandi, the nst lady. She knew I had Ellie, and had asked about me. It is really nice to know the people do care, it isn't just a facade.
It is sooo weird being here, without ellie. Everyone else post-partum comes in with their babies, and I have receptionists asking me where she is. I miss being pregnant. Seeing all these beautiful bellies makes me wish I could do it again, and then I remember "DUH, I'm sitting here waiting to find out why I couldn't be pregnant longer"
I have my follow up with Dr. Pressy. I loved her.
After this, I am going to the nicu, evergreen and l and d to deliver her announcements. Hoping some of my nurses are upstairs, would be nice to thank them in person for the care I received.
Lol, the mfm nurses down here don't know what to do with me. All I want is the pathology report. I am not really a patient, definitely don't need to have anything checked.
Hmmm... well, they did check my bp 110/70, not sure why. Nurse asked me how I am, if I have any bleeding (it stopped a few days ago, finally), any stitches (no... and she looked surprised) then she asked how I am sleeping. I told her fine... clueing in to the fact she knows nothing about me at all, and clearly had no idea Ellie was early, in the nicu, not at home, and not breastfeeding. Couldn't she have at least looked at my chart? I told her, and she was like "oh."
Come ON, Lady... you're a nurse at a high-risk clinic. Your patients deliver early all the time.
I should have eaten something, I am huuuungry.
You'd think with all I have been through, I would be more patient. Seems I am still rather impatient, and I hate waiting! If my phone had the internet, maybe id be less irritable, I really should have stopped at the store on my way. They always make you wait here!
And the verdict is: my placenta measured at thr 3rd percentile for size. It had lots of areas of poor perfusion, and areas of advanced maturation (aging faster than it should have). Spots of old bleeding, spots of new bleeding, all in all definitely not a great placenta at all. There were a lot of white blood cells present, but no inflammation or established infection to the placenta itself. So, just what they thought before I had her, crappy placenta!
Talked bc, and I asked if this would happen again. She said I have a 25-35% chance of it reoccuring. She told me, that I am her postpartum figure inspiration. She gave me a hug :) and I delivered my cards and went home!
Wednesday, May 18, 2011
Ellie is up to 1879g, just 4g over yesterday. Still, gaining is good.
When I came in this morning, her alarms were ringing because she was satting HIGH. That has never, ever happened. She also sucked on a soother twice during the day, and for both of my visits, spent her time during feeds, exploring the breast. Very exciting!
She's currently fast asleep on my chest :)
They've been talking about getting the rt (respiratory therapist) to rig a portable low-flow O2 system, so she can finally get her head ultrasound.
Because she had a good day, doc was eager to lay out an action plan to change feeds to q3 on Friday, and try an open crib on the weekend. Who knows though, today may be a fluke.
If she could just wake up a bit more, maybe we'd make more progress.
Tuesday, May 17, 2011
May 17th
Sunday, May 15, 2011
Nursery is Finished!
I took a day away from the hospital yesterday, and Jason and I slaved for twelve hours straight to turn a cluttered "storage" room, with ugly, hole filled walls, into the nursery of my dreams.
I LOVE IT.
We used Benjamin Moore's 618 Robin's Nest on the walls, a trailing cherry blossom decal from designeddesigner on Etsy, and my bedding. Still need to finish the skirt with the tutu ruffle along the bottom, and iron it, as well as wash the minky crib sheet. The curtains and rod are from Ikea, because I was too lazy to make curtains myself. The rod was less that $5!
The twin bed, dresser, bookshelf and chair, are my childhood pieces. They're solid wood, and have held up for the past 28 years, likely to go on lasting forever. Jakob has the same set (thanks to my brother for gifting his set to his nephew!)
All in all, it's a small room, but it works its purpose, and I can't wait to bring my little princess home!
Thursday, May 12, 2011
20 days
She just needs her little itty bitty amount to be happy. Last night they took a picture of her without the nasal prongs and while her gavage was being changed. She still had her face protecting stickers on, but its the first good look at her face we've had since she was born!
If she keeps growing well, next week she will move into an open air crib. Amazing.
Feeling better about things today. Man, having a baby in the nicu is a hard experience.
Wednesday, May 11, 2011
Be grateful
I used to spend so much time on the pregnancy boards. I love the people there, and all the support they offer. But... sigh. As due dates get closer, people start whining about wanting to have their babies already, and complaining about still being pregnant. It makes me want to scream. I do remember watching my due date come and go with jakob, and being ready to meet him, but having ellie early makes me look at those people differently. I wish I could say "be thankful you are going to make it to term!! Be grateful you most likely will never have to spend a minute in the nicu with a child too frail to hold. Count your blessings you will take your baby home, instead of calling a hospital home, and not knowing when your family will all be together". It is so hard to see all these babies being born, going home, and my baby is here, 19 days old, and we have no homecoming date anywhere on the horizon. She is 35 weeks today. She is still 100% gavage fed. She lost weight for two days in a row, virtually eliminating the past week's worth of growth. It is depressing beyond words. She still has so far to go.
If I could have kept her in until today, she would have been able to go home in a week. She would have been able to eat, breathe, maintain body temperature. But, I couldn't keep her in, and so I get to sit here everyday, waiting, watching and wishing I could have been so lucky as to be overdue.
Monday, May 9, 2011
No time!
I've gotten a few "are you okay" emails and calls... I'm fine, just busy.
Ellie is good. She was 3lbs10oz yedterday when I weighed her before giving her a bath. Up 10 ounces!! She's on 5ccs of oxygen, looking to wean this week sometime. Still 100% gavage fed, but starting to make smacking sounds during feeds. When we reach 1800 grams they move her to a big girl crib.
I love, LOVE the nurses here. They are so amazing.
Baby Kyle, Ellie's neighbour is leaving tomorrow. Only one other baby left from the first day we got here. Little Kloe is leaving next week, I think. There's another baby here for bili lights.
I want to go home, sit on my couch, hold my daugther, and watch my boys together. That's all I want for my birthday att the end of the month.
Friday, May 6, 2011
Eyes open!
Thursday, May 5, 2011
13 days
Ellie is 1543g today, and she was alert for the longest I have seen! I held her for a couple hours, from the start of one feed to the next. Now she is have her "quiet" feed, where we leave her alone to sleep, eat and grow. Too much handling stresses her out.
She has been on 15 units (don't know what kind of units!) Of oxygen for three days now, to help with her sats.
I have started the process to becoming a milk donor, since at less than 2 weeks, I already have a TON of milk in our freezer. You need 100 ounces to donate. By the time I am ready and the process is done, there will be way more than that!
I pump every 3 hrs at the moment, and a minimum of 8 ounces at a time. She only takes 8 oz a day! That's 56oz extra a dayyyyy.
No idea when we are going to start mouth feeds, that's on my asking list for today's rounds.
Just waiting for the cafeteria to open so I can have lunch, then I might have a bit of a nap and get back to cuddling my princess. We get to give her a bath tonight!
Monday, May 2, 2011
Exhausted
I had to wait for my parents to finish some errands thwn come back to watch Jakob.
I didn't get to the hospital until 6. When I got there, I looked over all the paperwork, noticed some errors they had to fix, and talked to the nurse about what to do with all our milk bottles and baby things.
Sigh... not too impressed with the staff yesterday.
But, I loved the infant transport team. Niel and Mike were awesome. Packed Ellie into the stretcher incubator, and off we went! Jason followed in our car. I got to go in the ambulance with E. Didn't take too long to get there. We unloaded and went up to the nicu. Ugh, more chaos! The staff at womens only called to say we were coming as we walked in the door! Talk about disorganization. They scrambled to get an incubator ready, and then got all the paperwork from the itt guys. Our nurse (who honestly looked older than my granny!!) Weighed Ellie - 1496g! Amazing.
She got her dressed, put her in her nest and did all the admission swabs.
After that, I got to hold her while they did her feed over a 30 min pump.
They talked to us about wanting to do twice a day baby to breast trials. The pump room is so nice, the family lounge is so nice, if you can overlook the crap location and super strict visiting regulations (jakob and grandparents only- and they have to be accompanied by us) it isn't all that bad.
Our pediatrician is amazing. I really like him. He was very positive. They do way less bloodwork than womens. "Why do tests if you aren't going to do anything with the results?"
Less pokes, definitely a good thing.
They use oxygen on desats lower than 88. The threshold at womens was 75! That's a huge difference.
She doesn't have to get to any weight in particular, she just needs to maintain her temp in room air, and take all her feeds by mouth. They don't care how (breast, bottle, cup, spoon...).
Ah, gotta deal with a jake mess! Will add more later
Sunday, May 1, 2011
Sunny Day
Almost 8 ounces on each side.
I took the bus today, from the apartment to children's. Loved the walk, although I am extremely aware of how much of a toll it took on my body to be stuck in bed for such a long time :( I loved the sunshine.
In a lot better mood today, especially about the move to St. Paul's. Our night nurse yesterday, said that she might be home within a couple weeks. Maybe maybe! Our move there is one step closer to home. Home!
Ellie had a bit of a rough night with desats related to feeds, but was great with my holding her today. I am a lot more confident with picking her up and repositioning her. She's so floppy, it is scary!
I am not liking the pumping one bit. Can't wait for her to start breastfeeding!!