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??
Monday, June 9, 2008
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 individually...so 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!!
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 individually...so 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...
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...
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