Feel so deflated...

Soooo...I heard from the lawyer today and he basically said that their expert said it doesn't look like medical negligence occurred. What he means by this is that it is his opinion that any other doctor, put in that same situation, would have used the same techniques. So this doesn't mean that she didn't perhaps cause damage with the vacuum, or possibly during the c-section. It just means that he thinks she did what she was medically trained for.

Their expert is now looking for another specialist in the field to see if maybe someone else would have a different opinion. He said they're going to pursue "cautiously" because there is no medical negligence statute in Canada so damages would be limited in any case, whether they find the doctor wrongful or not.

I offered to get Dr. K's notes for him so we'll see if he wants those. It was Dr. K who is well known and well respected in the field of Obstetrics that initially told us we should pursue legal action. He didn't agree that everything went according to what it should have. He told us we received substandard care in his opinion so I hope that our lawyer retains Dr. K's notes and uses them.

In any case, I feel like shit. Like there's a ton of bricks in my stomach. I am having such a hard time advocating for Anna in the NICU so I lost my mind today and spoke with the charge nurse and DEMANDED that we try her mouth feeding her tomorrow. I am sick of being thrown back and forth because every time a new nurse comes on shift we have to start from scratch. And now this email from the lawyer, it was just the last straw for me today. I might just sleep the rest of the day away to keep me from overanalyzing and thinking too much. I am already starting to replay the "video" in my head again, that's all it takes.

Anyways, on the other side, Anna has her eye exam schedule for September 1st now, which is this Wednesday. So Thursday we start from scratch again and call the hospitals to see for available beds and the whole transfer coordination dance begins all over again. Let's hope this time it works out and we have no other set backs.

M.

She is ready for Level 2!!!

Wow, what a week! Lately I have felt so frustrated because Anna's progress has sort of halted a bit. We were sitting on 10 days without any changes and we were beginning to think that she would never get off the ventilator. The hospital's NICU unit is moving on September 12th so we had a bit of a timeline to meet since there was no sense in moving her twice. We were SO hoping that she would make it out of there before September 12th.

Well to our surprise, one day before my 30th birthday (eek), last Thursday, they took her off si-pap altogether and she was able to breathe on her own! Since then she has done wonderfully and we were told Friday that on Saturday morning she would be transferred to our Level II hospital 5 minutes from our home.

Unfortunately things didn't pan out as planned. The Level II unit wanted her to get another eye exam before she came since their eye doctor was on holidays so she would be due for an exam in 2 weeks and he would not be around to do it. So now we have been bumped back to probably a Wednesday transfer, pending that there is a bed available for her in the Level II.

I'm not going to lie, the drive is killing us, the parking is killing us, the eating out is killing us. I'm not sure how we're making ends meet but we somehow are. I feel so burned out and I can't imagine how my husband feels with the pressure of work and travelling every day and money.

I guess Anna is what keeps us going strong :) She is doing so well now off the ventilator, she is up to 24mls of milk every 2 hours and the span has been shortened back down to 1 hour, and weighs 3lbs 14oz as of today, so almost 4 pounds! It doesn't seem like a lot to most people but it's so different for us. She's actually a size now where I feel comfortable handling her without feeling like she's too fragile. It's great!!

Anyways, I'll update when I hear anything about her transfer. Until then we just have to sit patiently and wait....

Frustrated, Tired, Cranky, Anxious...What Else is New?

Lately things have been so frustrating. I think me and the hubby are both done like dinner. Him moreso than myself because he has to go to work, deal with the 2.5 hour commute, deal with stress there, then drive home to pick me up and then we head to Toronto every day, deal with the commute, deal with the (some) cranky nurses, deal with being tired etc. It's just tough but hopefully there will be an end in sight soon. It's all for a good cause anyway but sometimes we all just need to take a step back and rest a little. Some of us more than others :) -- especially those of us who love their naps.

We spoke with a really lovely nurse the other day, she teaches all the new nurses in the NICU and she said they are moving locations Sept 12 and will have to "evict" -- if you will, all of the healthy babies by then because they can't possibly move all the babies to the new unit. So she said definitely by then Anna will be ready to go to level II. But most likely before Sept 12th. How exciting!! That means our little girl will be so much closer to home and we can see her throughout the day and not just one spurt of 2 hour visits each day. Hopefully she can get into the hospital 5 mins from our house, but if not the next one down is about a 20 minute drive for us (which is heaven sent compared to the 1 hour drive we do each way now).

Her requirements to be discharged at this point from the Level III unit is to breathe on her own (low flow oxygen is ok), to be clinically stable and to be tolerating her feeds. The only thing left for her at this point is to learn how to breathe fully on her own. Right now they are weaning her so she is on 6 hours of breathing on her own, and 6 hours of si-pap cycling. So 12 out of the 24 hours each day she breathes on her own. Initially they started her on 8 hours/4hours sipap but she got a bit too tired for that so they slowed it down.

She also has some reflux issues but they've combated that for the most part by lengthening her feeds to 1.5 hours. Which means she literally eats ALL DAY :) It's insane, as soon as her feed is done, boom click bang, and her next one is set up to go.

Hopefully once she is off of si-pap we can start feeding her via bottle. She LOVES her suckie so it seems that she won't have much trouble with the sucking part. Who knows about the swallowing though, that will be touch and go for a little while.

Her requirements to be discharged from Level II to home will be to take all of her feeds by bottle, not have any apneas of "spells" where she forgets to breathe and to consistently gain weight.

She will be 6 weeks old tomorrow (32 weeks gestation) and she is up to 3lbs and .04oz so she's doing great! I can't wait to have her home...it is so hard to leave your little baby in the hospital each night.

Thanks

Thanks everyone for the great links! I'm going to definitely re-visit them every time I'm having an off day to sort of give myself a quick "pick me up"! It's really nice reading/watching success stories, gives me so much hope that our little girl will be just fine. :)

Thanks again!!

Anna's Update

Anna has finally been extubated!! Yay! She has been off the tube since Thursday and she is doing so wonderfully. She is on a ventilator now called the si-pap which basically is a face mask that she wears which has oxygen flowing through it to keep her lungs from collapsing fully during the times when she exhales. So this makes the transition to her breathing on her own exclusively, much easier for her. This also helps her to not get too tired. Whereas when she was intubated she had the machine breathing for her basically. In this picture, she is fully breathing on her own. I was holding her while the nurse changed her sheets so she was off of the ventilator for about 20 minutes and was doing such a great job! The little tube that's in her mouth is the feeding tube because she hasn't yet developed the swallowing reflex at this young of an age.

The great thing is that she hasn't had any spells -- where she forgets to breathe. This is the first time she hasn't ever had any, and its been like this for the last 24 hours. That is an amazing feat for her because it's one of the requirements to being transferred to a Level II facility. She is on 15mLs of milk per 2 hours, and is steadily gaining weight now, about 20-30 grams per day. She is up to 1137 grams which is 2 lbs 8 oz. That doesn't seem like a heavy number to most people but considering how much she has grown it is a great number! I held her yesterday and I could actually feel some weight to her for the first time!

As for me, I am having a really tough time. The more weight she gains the more her face resembles her big brothers face. It's just so tough not to be reminded of him and what we lost. Most of the time when we are visiting her I am so so so happy to see my little girl, but once I get home to edit all the pictures I just get so down because she is almost an identical twin of her brother and I start to replay the entire "video" in my head over and over again, and start to over analyze and wish I had done things differently ie different hospital, c-section earlier etc.

Anyways despite that, I am trying to concentrate on staying positive. Our little girl is so precious and perfect and we can't wait to have her at home!

Tough Day

I finally sat down today and wrote the complaint report regarding the events of how Liams' death transpired to the College of Physicians and Surgeons of Ontario. Yes...fricken almost 2 years later. What possessed me to wait this long? Well I didn't want to relive the day. Honestly, ignorance is bliss for me...if I'm hurt I like to ignore it. The more I think about something the more it hurts.

Today was like picking at an old scab and re-opening the wound. Now the blood is gushing and gushing and is having a hard time healing again. Gross metaphor but it describes how I feel at the moment.

We just couldn't keep ignoring the report, the CPSO is right next to the Women's College where Anna currently resides. How can we pay so much attention to our new little girl and just not feel like we're sweeping our boy under the rug? I am so ashamed that it took me a year and nine months to start this damn thing. I hope he is not looking down at me in disappointment the way I am looking at myself.

So now I'm a bit numb...from shame, from guilt, from opened anger, from reliving the day. But there is also a sense of relief that it's done and now the College can do their investigation. I know they will contact the doctor within 14 days of receiving the report and I plan to send it out first thing Monday.

I just feel like there's a clock ticking..like there's a bomb that's going to go off. The more Anna grows and thrives, the more I am reminded of our little boy. Of what we lost in his passing. Of what we will never have back again. Yes it's tough on a 'good' day...I guess the best thing we can do is keep his memory alive and make sure his little sister always knows that she has a big brother in heaven watching over her.

Tough day...

1 Month Birthday!!

Our little pumpkin is 1 month old!! I can't believe that 4 weeks have passed already. We dropped off some chocolates to the nurses yesterday to sort of mark the occasion and to thank them for all of their hard work. Then we had a little mini-celebration incubator-side with Anna for her birthday. I just can't wait to have her birthdays here at home, celebrating with family and cake and her little friends.

We were so shocked to see her yesterday when we came in because they extubated her on the afternoon shift. This means that she has to work and breathe on her own. I really hope she can do it because once she is on c-pap exclusively, she can be transferred to a Level II unit within 3 weeks or so. I just want her closer to home, it would mean so much to us. But of course, not before she's well cooked and ready :)

She was 1102 grams yesterday but since they removed her tube she has dropped down a bit to 1094 grams. This could be because the tubes are gone and it could be because she has to work harder so she is burning more energy. She seemed to tolerate the si-pap pretty well (that's one step down from c-pap and it's one step up from being intubated) and she apparently only had about 2 spells last night (where her heart rate dips). On a normal day she has about 5-6 spells. These of course are expected still at this point only because she is still so young and doesn't remember to breathe fully all the time.

She is also up to 15 mL of milk every 2 hours and is tolerating her feed increasings very well. What a little trooper. Now she literally just has to get big and strong!

Here she is without any of her face masks on, her nostrils are all stretched out from the nose prongs, the poor thing, I hate seeing her like this but I have to remind myself that si-pap is so much easier for her to tolerate.

Trying to take one day at a time...

Our little pumpkin butt is doing well. She lost some weight again, down to 985 grams which means that they won't try to take her breathing tube out until she gains a bit more. I guess when she loses weight it takes her more energy to gain it back so they know it will affect her breathing as she will be more tired from burning energy. Also, we found out today that she is borderline anemic, so I think they will keep a close eye on that and if it gets any worse then they will have to give her a blood transfusion. I guess this is expected, I mean for the last 4 weeks nothing eventful has been happening and I think we've dodged every preemie baby bullet there is out there. But all in all, considering, I don't think these are major issues for her. So let's hope it stays uneventful.

I on the other hand have been a mental case the last few days. All I can think about is, now that she did survive, how will she be growing up? I wonder if she has developmental issues that we won't know about until later. I wonder if she has vision problems, hearing problems, breathing problems over the long term. I mean it could be a million things.

I tried to find some preemie baby blogs to read to sort of cheer myself up and honestly every one of them had a long term health problem. From not being able to walk, to collapsed chest cavities, to having severe mental disabilities etc etc. I am PETRIFIED to say the least. I mean I am SO happy that she is alive, but I never even conjured up the thought of "ok, now what, what's the next thing". I just don't want her to have a tough life. I don't care about me, I'll wipe her diapers until she's 55 years old, but I don't want her to suffer. It's not her fault she came early and I just hope she will be ok.

If anyone has any positive micro-preemie blogs to pass on, please do...I really need the encouragement at this point.