Saturday, May 31, 2008
I don't usually ask people for anything that has to do with money, however many people keep asking me what they can do to help...This weekend it is the 24th annual IWK telethon from 7pm tonight till Sunday at 6:45 broadcasted on CTV. The equipment, such as the oscillator that Alyssa is on, and even the incubators are extremely expensive, and have to be replaced after so many years. So if you have a couple dollars, please help support the IWK, they do amazing things here, and it's a great charity to support. For more information visit: http://www.iwkfoundation.org/
Friday, May 30, 2008
Will all of the oxygen she was on, there is a risk of having a bleed in the brain, which is very scary and another fear we had...Today we finally had some good news...no bleed, and although it will take time, Alyssa is trying to fight off this infection, and is heading in the right direction. Once she is able to move more, the fluid should start to come off as well.
As for Jessica, the poor little thing isn't having many breaks. Her belly started looking more distended yesturday, so an Xray was done. They found more air in her belly as they did the first day she was born, and made the decision that an exploratory laparotomy(surgery to open up her abdomen and take a look around) had to be done to find out where the air was coming from and then to pull the piece of bowel out that was damaged in hope that it would heal. Dr. Rob told us that he wanted to do surgery that day because she was stable, and could get unstable very soon. All the OR's were too cold for a micro premie like Jessica, therefore they had to bring the OR to Jessica,and surgery was performed in NICU in an isolated room. Surgery was a lot longer then we all thought...there were many more complications then initially thought...instead of just having one isolated damaged area of small bowel, there was multiple areas, and you can't start pulling out the bowel everywhere, therefore they decided on two major areas of damage to pull out, and hoped that all the area in between would heal on it's own inside the body. The first area was around 18 cm from the stomach, which is much higher then they like, they prefer the damaged area to be closer to the larger intestine...which is where the second piece is pulled out. Her diagnosis is called NEC...and maybe next time when I'm less tired and after I've read on it more myself...I can explain it better. So, we hope, and pray that she has enough small intestine to survive, we won't know for a while until healing starts to take place on the outside. It will be a very long process when feeding is able to begin, and I'll explain that more down the road, when we get to that point. Dr. Rob told us the 48 hours after surgery are critical to see how her little body handles everything, especially her lungs and heart. So far, she has been stable, and was stable during the surgery.
I know a lot of people are reading this, some family and close friends, and other people who know us, but maybe not really well...if you have an extra couple minutes in your day please say a little prayer for the girls. We had the girls baptized on Wednesday when Alyssa became very sick, it was a small little ceremony with Keith and I, the nurses, my parents, Father Walsh and the Chaplain Elaine. Jessica's godparents are my brother Randy and my sister in law Tammy, and Alyssa's godparents are my matron of honour and best friend Heather, and Keiths' best man and good friend, Trevor. Once the girls are out of the hospital we'll have a more formal ceremony, we just wanted them to be blessed to help them through all ups and downs of the NICU. Also for anyone that has been trying to get a hold of us, we've been staying in a parent room here in the hospital since Wednesday and will be here until Monday to be closer to the girls, our cell phones are not on in the hospital. You can leave a message at our house, and we'll try to get back to you when we get a chance.
Thanks to everyone for thinking of us and praying...We need to have a huge party when these girls can come home.
Tuesday, May 27, 2008
And Jessica, well she still has the PDA, but the cardiologist said the heart looks fine other wise and all of her erratic heart rates was a result of being a premie and her PDA.
The worst news of the day was with Jessica's cranial U/S. There were no bleeds, however she was diagnosed with a PVL, periventricular leukomalacia (something like that), which is a cluster of cysts near her ventricles...basically brain damage, that most likely occured as a result of the twin twin transfusion syndrome in utero, since Jessica was the donor. Things just continue to get worse for the girls. We thought her bowel issues, and her PDA were serious...and they are, but they can be fixed. Damage to the brain cannot be fixed, which was mine and Keith's biggest fear about delivering so early. It's been a really rough day. We don't know the prognosis, all we know is that poor little Jessica will most likely have some form of cerebral palsy. Tomorrow we are meeting with Dr. Vincer to answer our questions and give us some statistics. He is involved with the children in follow up clinic so would see all different types of CP.
All we can do is pray that her PVL does not continue to get worse and that Jessica (and Alyssa) don't end up with severe CP. We just want them to be happy healthy girls...is that really asking that much?
Sunday, May 25, 2008
The days go by extremely fast...I pump every 3 hours, so that takes up time, and in the afternoons is when I usually get to do kangaroo care, which is the skin to skin cuddles with the girls. Before we know it, it's 4pm and time to go and pick up Emily. We then spend time with her until she's sleeping, and I try to get back to the hospital from 8-10. Because I can't drive, this is sometimes still a challenge. When Keith's mom was here, she was able to stay with Emily when Keith and I went in, and also she drove me one night, and I've had friends take me in other nights. My parents came back today, yipee!! and I'm sure they will drive me in the evenings if I'd like, or at least be here, if Keith and I want to go in. I have taken a couple nights off (like tonight) and called right before bed for an update. Although the day goes by very fast, I still feel exhausted at the end of the day. I'm having much less pain, almost back to normal, and my strength is also better...but no marathons for me this year, hopefully next year.
Lately Alyssa has been able to come out of the incubator for kangaroo care every day, which is awesome. When the girls come out, they like it to be for over an hour, because like I mentioned before ( I think) it is the transition from in and out of the incubator that is hard on them. Alyssa's vitals have been excellent everytime she's been out. She's been quite stable all week, and was up to 2 lbs yesturday!!! However she lost 20 grams yesturday, hopefully she'll be back up again tomorrow. They heard a murmur when listening to her heart, but because she hasn't had any major changes in oxygen or her other vitals, cardiology has not been in to see her yet, and no further tests have been done. She also started taking small amounts of breast milk this week, and is now up to 2 ml every 4 hours, and tolerating well. She is pooping and peeing, and is usually on room air on the ventilator with low pressure support. They want to keep her on the ventilator to help her grow.
Jessica has had an up and down week. Her perforated bowel has remained relatively stable...she continues to drain some serous fluid, but no more then before, actually less and she had her first poop yesturday, which is huge!! So things down in that area seem to working. She is still NPO, meaning she can't have milk yet, only calories through her IV, because of the bowel issues. She is also gaining weight and is only about and 1 oz and 1/2 less then Alyssa which is really great. She also has a murmur, but hers is louder, and more concerning therefore she had an ECG done to take a closer look. She has something called a patent (meaning open) ductus arteriosus (PDA), which Alyssa most likely has as well. Jessica's is a moderate size PDA. When babies are born and they let out their first cry and take their first breath, the ductus arteriosis, normally closes, and that's the end of that. However premature babies who don't cry and take their first breath can still have this open, and it can, or may not lead to problems. Instead of the blood getting reoxygenated in the lungs, this PDA can shunt the blood back to the body deoxygenated, and cause increases in the oxygen needs for the baby. When the babies start showing major changes that this PDA is affecting them, there is two options: 1) medication...which Jessica cannot take because of her bowel issues, which the medication can further disrupt...or 2) surgery to close the vessel. Right now, we're playing the "wait and see" game...hoping that she will grow bigger before we need to resort to surgery, or best case scenario, the ductus will close on it's own, which is possible but unlikely with the size of it. Alyssa would be fine to take the medication if needed because she has no bowel issues.
Jessica has been like a yo yo, with her oxygen levels. She's usually between 30-40 % oxygen, and those numbers change constantly as her oxygen saturation continues to go up and down constantly as she can't decide where she wants to be. Today I was able to have some cuddle time with Jessica which was the first time in over 3 days. She's been too unstable with her oxygen and also having lots of dips in her heart rate over the past 4 days. They started her on some caffeine a couple days ago, which seems to help regulate her heart rate better. Now she is only going down in her heart rate when being suctioned, when before it would happen more frequently when being handled and also just for no reason at all. They also started her on antibiotics to try to rule out an infection as her white blood cells have been up. So lots more going on with Jessica...Good news for her though, is that her color in her toes is completely back to normal!!
Alyssa loves to lay on her tummy, and always wants to be covered up, Jessica also loves to be covered up, when on her back. Both of the girls have much better color now, they aren't as red as they were the first couple of days. Tomorrow they will be two weeks old...it feels like they've been here over a month. tomorrow they also have U/S scheduled for their heads, hopefully everything will be ok, and they will find nothing to be concerned about.
I think that all the news for this past week. Alyssa and Jessica continue to be little fighters. I can't wait till I can hold them again tomorrow!! Keith is back to work tomorrow...Mom and Dad are here to help again. A girl really needs her Mom and dad at times like these.
Saturday, May 17, 2008
Dr. Macleod was in to see me yesturday and today, which made up for not seeing her for the past week. She always makes me feel better. I'm still in the hospital, and will probably stay here until Monday. I don't have a lot of strength. It takes alot of energy to wheel myself to the NICU, and I can't stay there very long before getting week, or pain. The pain is so much worse then with Emily's C-section, but has improved the last 2 days to bearable. I want to spend so much more time downstairs, but instead I just try to go a couple times a day. Today I tried to be very ambitious, and walked to the NICU, but almost passed out on my walk back to the 7th floor. One of my favorite nurses, Mary, got me in a chair and wheeled me back. Mary was great...when on bedrest, she'd wash and massage my back before bed everynight. I've had really great nursing care here, I can't complain at all, and I am trying to think of what to get the staff on 7A before I leave. Also Dr. Macleod, and the birthing unit staff...Jocelyn and Connie really stuck in my head, although they were all really great.
Yesturday, I got to cuddle with Alyssa, it was amazing...We did skin to skin and she was so calm and relaxed for the 1 hour and a half, Charlotte said we could take her out again today to cuddle. Very exciting.
I think it's going to be hard at home at first with stairs, and trying to get into the hospital so much. I'm not sure if I'll come and spend the morning if I can tolerate it, or come several times a day, which may be tiring too.
We've had a little rotation system at home. Like I mentioned before, mom and dad spent the first 2 weeks of bed rest at home with me, then Keith's mom Helene spent the next 2 weeks to help out, and then Mom and Dad came back right before I was admitted to the hospital. Helene also came for a little visit to meet her new grandchildren. Mom and dad are going to stay with me until the end of the month, and then my aunt Linda from Toronto will be flying in to stay with me and help out. I don't know what I would do if I didn't have such a great family. They're really there when you need them.
And Emily, my sweet Emily, do I ever miss her. Yesturday was the first day she's seen me somewhat mobile, and she was so happy. I miss playing with her and holding her. She's doing so well considering...she's definetly off schedule and not always sleeping through the nights, but that's not the worst thing that could happen. She does come see me for about an hour after supper everyday, but it really gets her bedtime routine messed up, but at least I can see her play. She doesn't like seeing me in bed, now when she sees a stretcher or wheelchair she always says "mommy's". We'll keep her in daycare for at least the summer, so I can get to the hospital during the day and spend my evenings with Emily. Pumping seems so much more time consuming then regular nursing, because you can only really do it at home or at the hospital with all the sterile kits, so I have fine lines of when I'll be able to go anywhere, whereas if I was nursing, I could be anywhere. That's ok, by the end of the summer.
Well that's my little rant for today, I'm sure they're will be many more, so I'll give you the heads up when it's a rant, or when it's information about the girls in the title.
Friday, May 16, 2008
Alyssa Grace 1lb 15 oz
It is going to be a very very long road ahead of us...but we're very hopeful, and will continue to think positive and do everything we can to help Alyssa and Jessica get stronger.
We had our first scare the night after they were born...a routine x-ray was done on Jessica showing some air in her abdomen. Rob, the surgeon came to my room that night with a consent form to perform a possible laporotamy, or pembrose drain, depending on the results of another test to determine where the air was coming from. If from the stomach, then surgery was required...not even a day old, I was so upset and terrified, knowing well that she may not survive surgery, which Rob confirmed. Luckily...the air was not in the stomach, but the intestines, therefore a drain was inserted which was less invasive. He called me after the procedure to tell me everything went well, thank God. We still dont' really know what is going on there, the U/S didn't show too much, so they are keeping an eye on the drainage for now, and hoping it will resolve on it's own.
Jessica also had some perfusion problems when she was born, her feet, especially her right side, were blackish/blue, so they changed one of her IV lines, and luckily this week the color has improved and she only has a small blue bruised mark on her right great toe. We were all worried about her losing her toes...so another worry...decreased some.
The girls both had U/S done on their brains to determine if they had bleeds on the brains. This has been a big worry to Keith and I since the beginning. Luckily, neither one had a bleed. They will be monitored for bleeds up until they are 3 years old. Poor little Jessica had some type of lesion though, but we dont' know if it is significant or not, so another U/S will be done next week to monitor for changes.
Both girls are breathing room air. Jessica is still on the ventilator with very little pressure support, but mainly because she's having so many other issues. Alyssa has been off the ventilator for a couple days now, breathing through nasal prongs on CPAP, which is just a little bit of extra pressure to help keep her lungs open. Today, Friday...she has had a couple of periods of apnea, but she recovers ok from it...she may go back on the ventilator, which they told us from the beginning would not be unusual, she is still so young, and in "honeymoon stage". Often micropremie's do really well there first week, and develop more problems in their second or third week.
Alyssa lost 15% of her weight as of yesturday, but then gained again today, so she is up to 1lb 11oz, and Jessica is relatively the same.
Lots and lots of information. Keith has posted some pictures on both mine and his facebook sites.
Thank you to everyone who has helped get us this far and who I know will continue to support and pray for us in the months to come. Jessica and Alyssa are beautiful little girls who already are starting to show their personalities. We love them so much, and can't wait until the day we can bring them home and introduce them to all of you.
I have a really great family, I'm so lucky. My brother's both married wonderful women, Tammy and Danielle, who have been so supportive along with everyone else in my family. Mom and Dad came in to visit in the morning (they've been here with us these past two weeks, thank goodness), and then they all came along later in the evening (minus dad because he was away for the weekend) for a little party with all the kids. It was as good as it could be when laying on your back...yummy cake and good company. The nurses on the floor had a cake made and came in singing happy birthday in the afternoon. Little things like this really made my day. Also my best friend Heather came to visit from Moncton for the afternoon with her little boy Cooper, it was so good to see her.
But it wasn't very long before contractions started up again Friday night, so I went back down, then came back up Saturday evening, back down Sunday morning, and remained there. The pain was getting worse everytime, and starting to last a little longer. Friday they started me on a Nitro patch which is something new for relaxing the uterus from studies done recently. I'm not sure if it really worked on me or not. My uterus was so irritable at this point...even checking the babies heart rates seemed to irritate me. The pain always started as rectal pressure for contractions...so as you can imagine, the anxiety I had from any type of bowel pressure, not to mention the embarrassment of using bed pans. Every time my bowels moved, the contractions started.
Friday morning I had an U/S to check the babies as the contractions first started up. The babies were still doing well, but very little fluid around Phoebe, around 1cm (below 2cm is dangerous for development), and over 9cm of fluid around Ursula. Again...an amnioreduction would have brought on labour most likely...however may have also reduced the pressure on my cervix...so there was that fine line.
Sunday afternoon/evening...the contractions were the worst, and even though I had been on Morphine all day, the pain would not go away later on in the day. Another U/S was done. Ursula had over 10cm of fluid, and poor little Phoebe had barely 1cm, very scary. It was getting to the point where I really couldn't handle the pain anymore, so they gave me EVERYTHING they could to control the contractions and pain....finally after a LONG time, the last dose of morphine made the pain bearable. By this time, it was too late...my water had broke, and we had to decide how we were going to get the babies out.
Sunday, May 4, 2008
That Friday I was noticing a lot of thick mucous. I never noticed a “mucous plug” with Emily so I didn’t really know a lot about it, but it was something new, and it worried me. I called early labour assessment unit in the morning to find out if it was something to be concerned about. They told me it was normal and not to be concerned unless it was bright red and I was having contractions. So that was that…as the day went on, it still worried me because I read “mucous plug’s” are often an indicator or preterm labour, so I called back at shift change and gave them more information about having twins and TTTS, etc….but still they said not to worry….
Saturday…same guck, still worried, called early labour assessment again, asked to speak with a doctor, which I never was able to, gave them more information about my cerclage and amnioreduction, and then I was told to come in right away. After a very long wait, and a quick assessment, the Dr working said she was also a little concerned about the mucous so she admitted me to the 7th floor. All weekend I was having menstrual like cramps and rectal pressure, which is what I had before delivering Emily. The cramps weren’t getting any worse so I didn’t think they were contractions at the time. The weekends and nights in here are very long, because my doctor isn’t here, and it is usually residents who you deal with. I know residents are qualified to do their work, but I am so used to Dr. M, or even Dr. V, so when someone else steps in and makes big decisions, it is pretty scary when we know Lynne may have done things differently.
Monday couldn’t come soon enough, still having lots of cramping and pressure. I was wheeled down to the fetal assessment and treatment unit around lunch time to assess the situation. Babies still looking good, although there was some thickening around Ursula’s heart, but no other signs of congestive heart failure. The fluid remained relatively stable around 8-8.6 cm. Then Dr. M did a vaginal ultrasound to check the status of my cervix…and this was the beginning of the longest week of my life.
I am no U/S pro, but I can tell when there is something significantly wrong. There was a huge opening that I’d never seen before, I couldn’t see the last stitch, and I could have sworn I saw membranes pushing out. Apparently I am an U/S pro. The look across Lynne’s face would have terrified the calmest person. She explained to us that the cervix was opening up, and that the membranes were starting to push out and we had some major decisions to make. I didn’t know at the time how far dilated I was, I’ve heard a couple things. I think I was 5 cm dilated at the time of the U/S and close to full later that day.
Our first three tough decisions.
a) Allow Lynne and Dr. V to attempt “heroic” measures and do a “rescue” cerclage. This procedure at this time is called rescue for a reason. It is a very risky procedure, with only a 50% chance that it will work, and a large chance that my membranes would rupture. Meaning delivering twins at 23.4 weeks without having the chance for the steroid to be absorbed…which was another major decision that I’ll talk about later.
b) Our second option was to do the “wait and see method”. Basically tilt the bed into a Trendelenberg position where my head is lower then my feet, hoping to buy us more time without further dilating….and therefore would not be inducing labour futher by poking around, hopefully giving us enough time for the steroid to be absorbed.
c) Our final choice was not an option to us. Lynne told us that it was perfectly acceptable at this point to go through with the delivery, as there is not much more that can be done, and just accepting that basically it was over.
None of these decisions sounded very hopeful to me at first.
Our second set of decisions that needed to be made were based on if we were going to be delivering. The neonatalogist came in to talk with Keith and I about survival rates and handicaps for premature babies at 23 weeks. She told us that if we were 17-21 weeks or so, we wouldn’t really need to make this decision because the babies would be too small to survive. When you get to 23 weeks, the decision is ultimately up to the parents on how aggressive you want them to work on the babies. Survival rates for a singleton baby is 30% and also a good chance for handicaps, and therefore even smaller survival rates for a twin pregnancy. Also because the steroid injection did not have time to absord, the lungs would be very premature.
So again very hard decisions: Do we get the entire team of specialists in, knowing the low survival rates and high handicap rates, and have them rescusitate over and over again, until the babies can take no more, or HOPE that they make it through…even though we may be putting these poor children in a life that they could never be happy wit??. OR, do we have a specialist come in during delivery to assess the babies and determine if he/she thinks they are a “miracle baby” and have a good survival chance, and make our final decision then?? OR do we have the doctors wrap the babies up in blankets and let us hold them for a while, and let the doctors provide them with comfort care?? Not decisions that ANY parent wants to make…No body wants to give up on their baby, because nobody really knows what can happen….but on the other hand, no body wants their children to go through a tough life, full of surgeries, handicaps, pain and poor prognosis.
After a lot of discussion, Keith and I felt the best decision was to go along with the surgery and hope and pray that it went well. I felt that at least we were doing something, and Dr. M and Dr. V are excellent doctors, so we had a lot of faith in them. The surgery took about an hour. I was on the operating table with my head down very low and my feet up high. They filled up my bladder in hopes that the pressure in my bladder would push the membranes back in. Dr. M said you could see one of the babies feet trying to kick out. Once the membranes were back in, they had to find as much cervix as possible to stitch below. And all of this happened without rupturing my membranes….we were SO happy and relieved, during surgery we finally picked the girls names. After recovery I was transferred back into my room, and very shortly after that, the cramping started AND contractions began. We were very scared because I was already on Indocid, a medication to help prevent contractures. I was transferred down to birth and labour again, and was given Atalat (I don’t know the spelling of all these drugs), a blood pressure medication but also used to help relax the smooth muscles of the uterus….and after a very long night, contractions finally stopped and I got my first hour of sleep from 6-7am.
The next couple days I remained relatively stable and was moved back up to the 7th floor. I got another steroid injection that Tuesday, antibiotics daily to prevent infection, both Indocid and Atalat to prevent contractures, continued on Heparin for blood clots since I’m on bedrest, and still in the Trendelenberg position (hard to type and eat like this), other stool medications that I’m sure you don’t need to know about it, and the occasional Tylenol 3.
Thursday evening…the cramping and contractures started again, and they became more painful then Monday towards the end. I was transferred downstairs again back to the birthing unit, given more medications (by this time I was finished my dose of Atalat and Indocid), and then given some Morphine for the pain. I love Morphine, the pain was so much better, and I could barely keep my eyes open….finally some sleep. Once the morphine wore off, I was still feeling some contractions, but less, so I got more medication for contractions, more Morphine, and settled back to sleep. They discharged the heparin one of the times I went downstairs, in fear that I would go into labour and bleed to much, but they have recently restarted it again.
So here I am, still pregnant and still stable and still planning to deliver two healthy little girls, who knows when that may be. We have not come this far for nothing. Our next major challenge next week, may be another amnioreduction. I know Dr. M is a little apprehensive about it, because she doesn’t want to stir things up if possible, but my fluid levels continue to creep up.
I don’t have access to the internet, but have been receiving my messages from email and facebook from Keith…who will also copy and paste this blog sometime tonight.
Thanks to all of you for your nice messages, cards, thoughts, visits, flowers, treats and prayers. It continues to mean a lot.