Monday, June 30, 2008

The dreaded phone calls

Alyssa is over 7 weeks old, 51 days in the NICU and almost 33 weeks corrected age...She really had a great week last week. She was out for skin-to-skin every day, and even twice a day sometimes. I still try to get to the hospital twice a day, but it's been harder lately because of Emily. She's going through this phase of not wanting to go to sleep, and it's usually well past 9 before she's settled. So for the most part I go after this, but other days it's too exhausting...but I feel guilty when I don't make it in.

In the middle of last week, Alyssa's central line called it quits. This is a line she has had since the second week she was born to administer most of her medications and her TPN feeds. This line passes from a vein in her arm all the way up to heart to allow concentrated solutions to be infused with less complications. She was actually lucky to have it last for so long without infection or falling out. Because she has been doing so well on her feeds, they decided to keep it out, and put in a peripheral IV to continue her feeds for the short term, since they thought she would probably be strictly on milk soon enough. She was up to 29 ml of milk every 3 hours and doing great...She was free of all IV's for one day. But then we get one of those "dreaded phone calls" in the evening....Alyssa got another infection. We're so lucky to have excellent primary nurses. Charlotte and Sharla started the ball rolling immediately when they noticed Alyssa not behaving like herself, and sent off cultures for her secretions, had blood work done, and started her up on antibiotics ASAP. Then less than 12 hours later, after getting a blood transfusion and some antibiotics, Alyssa opened her eyes up and was behaving more like herself. Keith and I were shocked to come in that morning and actually see her ventilator settings lower and Alyssa breathing on room air. We expected her to be having more difficulty so were pleasantly surprized.

She will be on the antibiotics for a total of 7 days, and continues back on TPN and lipids plus her milk. They stopped all her feeds when she got sick, so restarted again at 5 ml. Today she is up to 10ml, and this increases again by 1 ml every 6 hours as tolerated. Her RR has decreased to 20 breaths per minute, she normally breaths another 30 on top of this. So if all goes as planned, another couple of steps before extubating. Dr. H is the neonatologist on for the next 3 weeks. She is the Dr. we met with in my hospital room when I was 23 weeks to discuss survival rates of twins born that early. She is very sweet and kind, and told us that they would like to get Alyssa's rate down to 10 before extubating, however if she pulls the tube out herself, they will keep it out and see how she does. This is a little scary to me, as I really don't want anything happening that isn't planned, but she does love to grab that tube, and she's very strong.

For anyone that is wondering, we did warm up to Dr. G by the end of last week (we only went to a couple of days of rounds with him...because of Jessica). It's unfortunate for us and also him that he just happened to start his rotation when he did. Although, I really didn't like how cold and harsh he seemed to be, I probably wouldnt' have liked the situation no matter who the neonatologist on was.

So that's the update for now...Alyssa continues to grow, and thank God this last infection was nipped in the butt quickly, a little set back, but we're still ok.

I feel another rant coming on in the next couple of days...

Tuesday, June 24, 2008

The big baby on the block

Last time I gave an update on Alyssa, she had just started on dexamethasone, the steroid to help decrease the inflammation in her lungs. It did help, and very quickly. Within 24 hours, her settings were decreased on the ventilator, to very low pressures, and her RR (respiratory rate) went from 65 to 30. However as the medication was weaned over the week, her rates went back up to 45 and have remained there for another week or so before they finally went down to 40 as of yesturday. The RR is how many breaths per minute the ventilator is giving her. She is taking some breaths on her own, but not enough to be extubated (taken off the ventilator).
I mentioned BPD in a previous blog, which is bronchopulmonary dysplasia - abnormal tissue growth caused from the inflammation and damage to the lungs. BPD usually occurs with premature babies who had respiratory distress syndrome at birth (requiring mechanical ventilation), and are still on a ventilator several weeks later. The crappy thing with BPD is that these babies need the assistance of the ventilator because the inflammation makes it difficult to breath, however this assistance of extra oxygen and pressure to the lungs is also what is preventing the lungs from healing.

Of course everything we've read suggests that severe forms of BPD are rare, but as you all well know if you've been reading this blog, rarity is more common for us then not. And Alyssa has bilateral cystic BPD which is the more severe type. How severe I really don't know. I'm planning to meet with Dr. G this week before his rotation ends to find out his input on the situation. Today was the first day that Keith and I both attended rounds since we found out about Jessica being so sick. It wasn't as bad as I thought it would be, but I think that's because there was a lot of people that I didn't recognize.

BPD can cause mortality and morbidity, however in MOST (80%) cases there is no long term consequences, and although some babies may go home with supplemental oxygen, usually after two years it is no longer needed, and after 7 years the baby has completely normal lungs. The other 20% of premies with BPD may show some developmental delay at 3 years...Alyssa will be the 80% that does well in case you're wondering ;)

So, they are trying to wean her very gradually off the ventilator and let her do as much as possible. They may give her a second course of steroid if she is unable to wean off on her own, but like all medications there is side effects, like a slower growth rate, decreased immune response, therefore more prone to infections...and also some studies have shown an increase in CP when used at higher and longer doses. So wait and see...

Now for some good news, actually great news. Alyssa reached 3lbs yesturday. She is no longer the smallest baby in the back pod. There are two other babies who are in the 1lb range (not twins), so she is the big baby. She had a very busy morning yesturday with tests. She had her 4th cranial U/S to check for bleeds, and yippee!!! her scan was normal. She also had her eyes tested for ROP (retinopathy of prematurity). Premature babies who have extra oxygen and other problems may develop abnormal blood vessels around the retina which can damage this area of the eye and possibly cause it to detach from the wall of the eye. Scary....however....yesturday was a good day, and this test came back fairly normal as well. It's not to say that she won't have problems down the road, her next test is in two weeks. But on the positive side, the first test they only charted "immature" eyes, which I'm ok with.

Ok, I think we're all updated. Alyssa is feeding 12 ml of milk every 3 hours and it increases by 1ml every 12 hours if she tolerates it ok. She has been doing well, and when I call tonight, hopefully she will be up another ml. She poops and pees and loves her cuddles out of the incubator with both Mommy and DAddy (today for the first time without Jessica for Keith). She usually gets close to room air when she does kangaroo care.
Our big goal now is to get off the ventilator with very minimum blips on the way. Keep praying.

Sunday, June 22, 2008

Jenn's rant #3

I don't really know where to begin, or even what to write about, but feel like I should be saying something..anything. I'm feeling a little lost for words, but I'm sure they will come as I start to type. One day I feel ok, and I feel strong, and think that things happened for a reason and Jessica is at peace. And the next day, or even the next hour I am sad, depressed and angry. I feel like the memorial service was so long ago, and I don't like that feeling. Every day I come from the hospital I go through Jessica's pictures, and watch the video so that I am spending time with ALL of my girls. I am still wearing Jessica's hospital bracelet, I can't seem to take it off yet, nor can Keith. I still carry around her blanket with me, although I've been better to not have it every second of every day, like a couple days ago. However I do need it to sleep with every night. I haven't been able to finish the diary that I started in the NICU for Jessica about her progress. I still feel like she is here and sometimes talk about her like she really please ignore my "crazy talk".

I spend my nights thinking about every possible thing that could have been different during my pregnancy, or during the month she was with us. And I still wonder...why us? It's awful to think...but I see these Mom's out smoking daily, and then coming to see there baby's in the NICU to cuddle and nurse, and they have good size babies...why are they so lucky... and us so unlucky? I never smoked, I never drank, I ate relatively healthy, exercised up until I was put on bedrest, drank all of the high protein drinks, pumped milk for my girls...and yet this is the fate we were given. It seems unfair to me. It seems unfair that any child should leave before their parents. That is not the way any of us plan for it.

I wonder whether or not if the girls came two weeks earlier, like they were trying to at 23.5 weeks if things would have been different. If all of Jessica's problems that they say happened in utero could have been prevented. But then both girls may have had major bleeds from prematurity, or may not have survived birth altogether. And Alyssa could be doing worse if she were born two weeks earlier. I guess we'll never know, which makes it so hard to deal with thinking about the "why's, the what if's, and the how come's". I think out loud a lot now.

People keep telling me how strong I am, which really couldn't be further from the truth. I am a very good actress. In public I put on a good show, and sometimes I even believe that I have strength, but I break down a lot in my own time, and hold it together for every one else. Keith and I are very fortunate to have Emily, and also Alyssa. But it doesn't make things easier. One does not take away the grief we feel for Jessica, they are seperate. So if you're ever looking for the "right" thing to say to either one of's definetly not "well at least you have Alyssa". If anything, it makes it harder that Jessica had an identical twin sister. I am reminded every day of losing Jessica when I walk into the NICU, and see a baby that looks exactly like Jessica did. And as she grows up, we'll constantly be reminded on how beautiful Jessica would be too. Since my twin cousins were born, over 17 years ago, I always hoped that I would have twins. And I did, but I wish it lasted longer. It is hard seeing other twins. I am very jealous, because that is what I am suppose to have, someday hopefully it will get easier.

For the moment, I am back to taking one day at a time. Keith and I have made sure that we've been there for each other. It's hard because we each have our feelings and moments at different times, but we do our best to be there, or give space as much as needed. Our family and friends have been wonderful throughout all of this. The support that was shown at Jessica's memorial service was amazing, and I thank everyone for being there for us. We are so lucky to have such amazing people in our lives. The best thing for us, is to know that we can talk to you about Jessica, we enjoy telling people about her, and showing pictures. By letting us cry when we need to, and not pretending that everything is ok...because it is not...this is what will help us get through this.

I hope that I haven't scared other mom's with all my blogs, because our situation was very rare. I've heard many positive stories of women with TTTS, and many positive stories with babies born at 25 weeks, and weighing less then 2 lbs. Just remember when things are really bad...all you can do is take one day at a time. And trust that your faith will help you eventually get through everything.

Saturday, June 14, 2008

Baby Jessica was given her wings

It is taking me all of my strength right now to write this. Never in a million years did I ever think we were going to lose Jessica. It was Tuesday morning during rounds when everything came crashing down. Monday after meeting the new neonatologist we knew she was sicker then we thought...and unfortunately the U/S results we were waiting to hear about were not good news.

I arrived late to rounds, Keith was there, so I missed alot of the discussion, and even when I was there, I was sitting outside the circle and didn't hear very well. All I remember hearing is the beginning discussion of Jessica's cranial U/S and the Dr. asking Keith if he knew about it, and he didn't. He asked Keith where I was and Keith pointed to me behind him. The doctor immediately interrupted rounds to have a family meeting. Alot of our discussion is still a blur to us, so we were explained many times of her situation. Her abdomen U/S showed no air/gas which she should have had by this point after surgery (the air before was found outside her bowels which is why they had to do surgery). Her blood pressure dropped immediately after her last dose of hydrocortisone wore off, which not only could she not maintain her blood pressure but also a sign that her adrenal glands were not working as they should. Dr. G explained to us that she had a 95% chance of passing away even if he did all heroic measures and tests possible to keep her alive, within a week. I personally think she would have lasted longer, but I'm not the doctor. And if she did survive that week, she would get sicker and may be in pain. On top of this, her cranial U/S showed a grade 3 bleed, which is severe. This is on top of her PVL discussed in an earlier blog. We were told that even if she miraculously made it through everything...(her lung disease, PDA, NEC) she would have no quality of life. And if she could get through her NEC issues, (which most likely she wouldn't) in her bowels, she would most likely end up with something called short gut syndrome (or something like that) where she would never be able to leave the hospital because she would be fed through IV, and eventually this would damage her liver. Although she possibly could have lived like this for a couple of years, she would eventually pass because of her liver. So the decision that I feared from the first day knowing that I had TTTS, the decision that no parent should ever have to make, became reality, and Keith and I had to decide if we continue treatment or not.

Keith and I kept thinking of that 5% chance. And this is not even thinking of her quality of life, but 5% chance of even surviving, we wanted to believe she would miraculously beat all odds, so we requested to meet with Dr. J for a second opinion, who was Jessica's Dr. for the past 3 weeks. Unfortunately she was in Cape Breton on Tuesday, however we were able to talk to her on the phone. After discussion with Dr. G, she told us the same information, less technical and in a nicer way...and without telling us exactly what to do, she really did help make up our mind. She knew we would never want to have Jessica in any pain, or to pass away suddenly without a chance for us to say goodbye, or to prolong her life just for selfish reasons to have her with us longer...she knew us, and knew how much we loved her.

Our second family meeting, we really didn't have any decisions made. I asked the Dr. if he thought she would be fine one more night, because we needed more time. I dont' remember exactly what was said, but not what I was hoping for...he went on about all this medical stuff and bleeding out of here and there, and all the possibilities that could have happened, which made things so much worse then they really needed to be. I just needed someone to say..."Yes she'll be fine one more night." Thank God for our nurse Sharla. She was the exact person we needed that day, and I don't think we could have got through the day without her. She explained things to us so well. She even switched her shift for us so she could be with us the next day. Alyssa's nurse was also who we needed working those couple of days, Charlotte, who has really been there for us since the first week the girls were born.

Wednesday we had another family meeting...our brains kept telling us what the right decision was, but our hearts kept telling us something different. Dr. J came to see us as soon as she got back from Cape Breton, and only after talking with her, I felt we really only had one decision...and it was SO SO hard to make. We told the doctor that we would let Jessica go, it was so difficult to get the words out. So she was kept on her pain medication and the orders for DNR (do not rescusitate) were charted. Charlotte, one of primary nurses had said they could arrange to have both girls together if we liked, and of course we wanted this.

I really am trying to make this as short as possible, but I feel like I need to tell everyone exactly what happened, to hopefully allow myself to believe we really did make the right decision. Even after we made our decision, we still struggled. We were told that once Jessica was switched off the oscillator to the regular ventilator she would most likely not survive long. We were also told that once her tube was taken out, although most babies hearts are strong and continue to beat for a couple hours after words...that hers most likely would not because she was sick and her body was not showing any signs of healing on her own. The one thing that I found really helped me...was when Sharla told us that it is Jessica making the decision, with her body not healing. She was ready to get her wings, without making all of it lay on our hands. If she only had one problem, it would have been so different. But she had so many, she really had all the possible problems a premie could have.

Jessica gave us the day with her. That was her gift to us. We held her in our arms all Wednesday, and Alyssa also spent the afternoon in our arms with her. They held hands, they will always be twin sisters, and she will always be a big part of our lives. It was so hard to see all of her vital signs looking so good when she was on the regular ventilator. But we knew the inside of her wasn't doing well. That evening Jessica came into our parent room with us, and we cuddled with her for the last time on our bed, she was perfect. This was the first time I really looked so closely at her. She had all of her little parts perfectly shaped, her colour was so good, nice and pink, her body was swollen from being on the paralyser medication for so long, but she was finally moving for us as they stopped giving it to her when on the ventilator. Her little ears were not fully developed with cartilage so they were a little flat....her big toe on the right was more bruising. Her skin was so soft, she had such dark eyebrows. She was, and always will be perfect in our hearts.

Thursday June 12, 2008 Jessica was one month old, and her tube was taken out shortly after midnight.
He was wrong...she did have a strong heart...and it continued to beat for 4 more hours. And then finally our little girl got her wings. After only a month she brought us more joy then you can imagine, she was a beautiful little girl, and I know she will be helping Alyssa through all of this. I don't think I can write anymore now. Please know that we love you all for your support and prayers during this really difficult time.

Monday, June 9, 2008

Four weeks old

It's hard to believe that Alyssa and Jessica were born 4 weeks ago. It feels like they've been in the NICU for much longer. It's amazing, and scary how much they've both been through this month...and still fighting. I don't know to many people who can go through everything they've been through and still look as cute as they do.
Today was change over day. Every 3 weeks the neonatologist and their team (usually involves a clinical associate who is a doctor trained overseas normally, or a nurse practitioner) rotate, therefore the parents and babies have to get used to someone new. Which could be both good and bad, depending on your relationship with the previous doctor I guess. We really loved Dr. J as I've said many times before, she made me calm. Dr. G is on for the next 3 weeks, and he's a little more blunt then I'm used to. Every one just has there own ways of doing things, and I'm not quite used to his yet.

Friday I mentioned that Jessica was coming off the oscillator...well it was short lived, because her C02 increased to the high 80's very quickly. The nurses did 3 blood tests for her gases, because no one wanted to believe that it was accurate. Therefore back on the jiggler she went, and she was getting more of the paralyser medication as well (rocuronium I think). She's been "stable". I always found comfort in stability as you'll remember from my pregnancy. It always seemed if things were stable, things were good. After today I'm not so sure. It has been 4 weeks, and a couple weeks since Jessica's surgery, and Dr. G very bluntly told me how sick she was in rounds today, and how her body is not showing any signs of healing on her own, and that the "machines" and medication were doing most of the work. I guess as nieve as this may seem, I never really thought of it like that. I keep thinking one day at a time, every day we get through, the better. Now I'm scared, because although she is "stable" she really isn't getting better. I think she will, and I hope and pray she will, but his bluntness today really hit home. And it's a little embarrassing to be crying in the middle of rounds when the entire team is around you. Today Jessica also had an abdominal U/S and a cranial U/S that we'll probably find the results for tomorrow. The cranial U/S is not going to affect treatment now, we just wanted to know if her PVL (periventricular leukomalacia) is progressing or staying the same. Please pray that tomorrow we'll have some good results for both U/S's.

Rounds with Alyssa this morning seemed a little more optimistic. Although she has some severe lung damage (BPD) like Jessica, they feel her infection is improving, although very slowly. They started her on a steroid today, which is suppose to help decrease the inflammation in the lungs, and help to wean her off the ventilator eventually. Dr. G said that hopefully we'll see an improvement in 24 hours which will be 1pm tomorrow.

So today was a little bit of a bummer day, and I hope my feelings of sadness were not obvious to Jessica or Alyssa. Keith and I thought we needed a lunch away from the hospital, so we went to My Father's Moustache and sat on the patio for a couple drinks and food (yes I pumped and dumped). We needed it today, but definetly not something we can do everyday...I forgot how expensive eating out was.

Emily is doing well. She always cheers us up at the end of the day when we go to pick her up. She has been so good through all of this. It has been really hard on me though, especially when we were staying at the hospital, because Mom and Dad spent the most time with her, besides at childcare, so Emily started calling my Mom and Dad (yes Dad too) "Mommy", I had to keep saying, "Emily, I'm Mommy". But now that we're home again, it has been better. She just recently started to cuddle with me, and although I'm not suppose to be lifting for another 2 weeks, sometimes I just have to pick her up in my arms and hold her...I need that more that the healing of my incision I think.

That's it for now, I apologize for my very tardy thank you notes, wedding cards (Michelle), birthday cards (Tammy and Danielle), and graduation cards (Kelly)...better late then never right??

Friday, June 6, 2008

Off the oscillator...

The IWK telethon raised over 5 million dollars last weekend, thanks to everyone who contributed!!
Since then, Jessica and Alyssa have remained relatively stable. Alyssa was taken off the oscillator on Tuesday and put back on the regular ventilator. She was doing well for the first 24 hours, so I was able to take her out for kangaroo care on Wednesday. There is no better feeling then holding your baby against your chest and seeing them so calm and happy. She's been opening her eyes a lot more lately. Yesturday she was looking all around at Keith and I, so nice to see her looking in our direction. With good news, of course more bad news. Another X-ray was done recently, and her right lung which had collapsed and was getting better, has re-collapsed, and is completely full of secretions. She has thick yellow gobs being suctioned every 1/2 to an hour, and chest physio being done regularly which of course she loves (no, she hates)!! Poor thing...she can barely breath with her tube getting all filled up. Last night I thought I was going to have a heart attack as her oxygen saturation in her blood dropped to 15 % as the nurse was bagging her (normal is between 85-95%), and her color was extremely blue. She is still on lots of antibiotics for the pneumonia, although the neonatologist mentioned today that if major changes are not noticed on X-ray by the end of the weekend, they may have to look into dysfunction with the actual lung...hopefully not, and the infection will be better soon.

Jessica has also been stable, however since my last entry, she was put on the oscillator because her CO2 was extremely high. She didn't get as swollen as Alyssa because she wasn't on the paralyser medication constantly like Alyssa was, she just gets it as needed. Today they are going to try her on the conventional ventilator to see how she does, but warned me that she could go back on the oscillator. She's still on a lot of medication for her blood pressure, which worries me, because she needs a lot of perfusion to her bowel area to heal, it would be nice if she could keep her BP up on her own. We had a chat with Dr. J the other day about the "overall picture" of Jessica which was very upsetting. In rounds daily, the team goes over each system of the body I felt I needed to hear the whole story, which I had an idea about, but you can still never quite prepare yourself for. Like Dr. V had told us a couple days ago, because of Jessica's PVL, she has a 75% chance of developping CP, and as Dr J told us, the NEC can actually worsen these numbers. She told us she is very sick, with her PVL (brain damage), BPD (lung damage), NEC (dead bowel tissue), and other issues that are there, but less serious as the last three (and all mainly as a result of the TTTS). SO...she HAS to and will fight this NEC which is very possible, but a long road ahead of us... her bowel WILL heal, and because she's been so unlucky to get every possible preemie problem you can develop (even when "the book" says only a 5% chance of developping NEC, and 5% chance of PVL, etc...)....she will be the lucky 25% to either NOT get CP, or get a mild form if any. This is my positive thinking, which took a good couple days to get here. After meeting with Dr. J...initially all I could do was cry and picture the absolute worse, because she talked about if Jessica ever got an infection like Alyssa, she would most likely not survive, and if she did could be very disabling for her in the future and Keith and I may have to make decisions about continuing treatment. I dont' think I could ever stop treatment...because your really don't know what the future will hold. The Doctors have to give you all the information, but it doesn't mean that statistics are always correct. I've met other mother's here, two who were in my situation over 2 months ago. Both mothers delivered around 25 weeks as well, and had 1 pounder babies, and have been through a lot...they don't know what the future will hold for their babies, but right now, they are feeding, have had multiple surgeries and look like "normal" babies who they love like crazy. I would never love any one of my girls any less if they had any type of disability, I just want them to have happy good lives. Every day I love them even more.
Time to go back and see them, and see how Jessica did off the oscillator.
Please keep praying!!

Jenn's rant #2

I feel really bad feeling this way, because I don't want to make another mother's concern seem unjustified...but it is really frustrating to see so many babies come in and leave within a couple of days, while my babies continue to be sick. One night we actually saw a father walk into the NICU with his baby in his arms wrapped up (weighing probably over 8lbs), and no other team members other then a nurse around, and he casually put the baby in an incubator. That baby was gone the next day, lucky boy. And then when you see mother's come in and cry because they can't take their baby to their room that day because they need some phototherapy or something like that...this is a poor me moment...but I can barely hold my babies, and everyone around me seems to be able to take their babies in and out of the incubator as they please. Everyone is in here for different reasons, and I understand that no one wants to be in the NICU, but it would be nice if they could put all the micropremie babies together and all the "big" babies together, so mother's like me don't feel so jealous of the other mothers cuddling with their babies, or even better...taking them home after a couple of days.

I've been told by some of the nurses that I may get to a point where I don't like seeing other pregnant women, because of all of our complications...I haven't been to that point, so please friends and family please continue to share with me your good news!!

That's all I have to rant about now...