I've been doing a lot of soul searching as I struggle to deal with my grief over the loss of Cole. TTTS robbed something so amazing from my life and I am fighting so hard to get it back. I have no idea how to do this and some days I am not even sure I want to, it hurts so much. I decided, after reading some of the things that I wrote when Cole first passed away and while I was in the hospital, that I needed to get writing again. I wasn't sure if I wanted to make this a public venue but then knew how much it meant to me to hear from others before and I knew that those who read this and wanted to comment would help me to heal. I am sure I'll babble lots in this blog and it's really more about me healing, remembering and taking the journey than about anyone reading it.
I picked this background because of the butterfly. Butterflies have become a symbol for me of so much but mostly of Cole. They are a symbol of perinatal loss....the loss of a baby in utero, at birth or shortly there after. They seem to appear everywhere in our lives. I see them all the time in the backyard. We have a butterfly bush in Cole's garden and butterfly solar light as well. A friend gave me a butterfly gift bag and somehow the speech Geoff and I read at the memorial service ended up in it. The list could go on and on.
I chose the title of the blog because this is a follow through to the journey of hope we took with Cameron after my water broke and of Cole as he stayed with us to guide and protect us all winter...and always. This is a journey of hope for me as I am so hopeful that I will make it out of this dark hole I feel like I am in somedays. And it is a journey of healing as my heart heals from the deep wound created when Cole died. It is also a journey of healing in my Christian life and I want to become a better person and a better Christian through this journey.
Along my journey I will have a few books and plan to share a few passages and quotes from them and the bible. My best and dearest friend, Charlotte, gave me a book when Cole died called "Grieving the Child I never Knew". It arrived just after I moved from Toronto to London. I tried to read it but it seemed to be in a place that I just wasn't. Some of that had to do with not having any closure to Cole's loss and some had to do with not feeling like I needed this devotional help - yet. And then I forgot I had this book.
Over the past few weeks I have felt like I am missing something. I know what part of that something is, my dear sweet son Cole. But I am also missing a focus and a part of myself. I am not sure I'll ever be the same person I used to be. And I feel like saying 'And why should I be. For anyone who's looking for the old me...well you've come to the wrong place.' I changed forever the day the echocardio doctor told me "Your baby has passed away...I'm so sorry Mr and Mrs. Tummers but your baby died'. I'll NEVER EVER get over that...how can I. But I also need to remember that it wasn't the end of the world, that life goes on after death. That Cole is in the most amazing place.
Who am I to want to bring him back from there. Why should I think that he would want to come to this world filled with the trials of life when he can be in a place where everything is perfect? Where there is no pain, no sadness, no financial worries, no evil. Sometimes I think, as do many others, that by lossing a child you never knew, by that child not living a life here on Earth that we and they lost out...all those things we could have experienced together. Oh what I wouldn't give to have my son here with me giggling and smiling like his twin, watching his first steps, hearing his first words, seeing him make friends and go off to school, graduate, get a job, get married etc. But those are just the positives...we all know there are so many tough things life has to dish out. I know because I've lived through so many and I am just one person. Who wouldn't want a life of no worries and pain for their child and what right do I have to deny my child of that.....and so we're back to finding a way to let Cole go, to feel good about his new home in Heaven and to move on and make my life what I want and need it to be.
So back to the book. It is a 31 day devotional book. 31 different topics to read, to think and pray about and to write about. I doubt I'll do it in 31 days and I'm sure I'll get off topic now and again (who me???) but I want to work through this abit each day if possible and hopefully in a month or two I'll feel better about the loss of the most perfect little boy, the mirror image to the babe who cuddles me each day and reminds me why I'm here.
I am hoping this will work....I wanted to go back and cut and paste in some of the history of our story before I close the Caring Bridge site for good as many people read these blogs to get help...and I think that some of what I've written in the past will help others...so here goes...
I decided that the best way to fully tell the story of our journey is to start at the beginning. And what a crazy time it was. After the shock wore off the planning began and the excitement soon outweighed my nervousness and worry. I pictured babies in matching outfits, started planning for next year’s Christmas photo and began plans for help in the first few weeks home after the hospital From the start it was made very obvious to us that identical twins posed much greater health risks than fraternal twins and the ultrasound scans seemed to indicate that. Membranes, placentas, sacs, fluids...all these terms became a part of our daily lives.
On December 11 at a routine ultrasound it was discovered that our twins were suffering from Twin to Twin Transfusion Syndrome and we were immediately off to Toronto's Mt. Sinai hospital for assessment. The disease occurs in identical twins and results from a shared placenta. Within the placenta there are vessels that form that instead of linking just each baby to it, they link the babies to each other. One baby takes in nutrients from the placenta when done with them instead of them going back in to the placenta to be filtered and reused they travel to the other baby. The baby who gives is known as the donor and the baby who receives, the recipient. The signs of a donor baby are less or no amniotic fluid, no urine in their bladder and a smaller size. They can also, further into the disease, have heart and organ problems. Our babies were the same size but our donor baby had no amniotic fluid and no urine but other than that he looked very good. Our recipient baby, however, appeared to be more affected. He had a full bladder, lots of amniotic fluid and his heart appeared to be somewhat affected, perhaps working harder than normal. We discussed our options and the outcomes of each. If we did nothing then there was a 100% chance we would lose one or both babies or we could have the laser surgery preformed at Mt. Sinai, the only place where it was done in Canada. They would go in with a scope and laser and cauterize all of the vessels that connect the babies, essentially cutting all paths for blood to move from baby to baby. It did come with risks, one being pre-term labour and if that happened we would lose both babies as they were too small to be viable. The success rates for this surgery were 82% survival of one baby, 50-60% that both babies could be saved and a 7% chance that there would be some neurological damage such as cerebral palsy. This surgery had been performed about 200 times in the last 4-5 years at Mt. Sinai by a doctor named Greg Ryan who soon became our miracle man.
We left the scan feeling scared but confident that they would save our babies and correct the problem.
Everything regarding surgery went very well. All vessels that were causing the transfer have been sealed off so that problem will be fixed. Prior to surgery we learned that our recipient baby moved from stage 3 to stage 4 with there now being fluid in his abdomen as well.
During the surgery another problem came up...in order to get to all areas in the placenta that were affected they had to make a small hole in the sac seperating the babies. Immediately the fluid moved from the one baby to the other...which meant immediate relief for them BUT it also means that they were not completely seperated so it woud be a VERY heavily monitored pregnancy with a chance I could end up in the hospital to monitor them to ensure their cords don't entangle.
Unfortunately this was a VERY acute and fast acting case of twin to twin and a lot o damage had been done to the bigger twin. The smaller one was always doing well though. Geoff was able to watch the whole procedure and actually got to see the babies inside my womb and even watched as the donor baby reached out, through a whole that was made in the amniotic sacs, towards his brother.
This day I was to have an echo cardio ultrasound on the baby who's heart was affected to see what damage is there....Dr. Ryan was very concerned about this babe as his heart was weakening and his disease had progressed quickly
On Saturday around 11:00 we learned .that our precious little boy, Cole, had passed away. His heart had failed through the night sometime.
His brother, Cameron seemed to be doing well. After further testing it was discovered that a fetal blood transfusion was needed to help to hopefully ensure there will be no brain or organ damage.
Tears came pretty easily as did frustration and disbelief. It was so difficult for us to believe that in such a short time our lives could change so quickly. It became very hard to know how to cope with the lose of Cole and still remain strong and focused on the miracle that little Cameron was.
It was determined after the transfusion that Cameron was holding his own and we were discharged on the Sunday with a sense of complete shell shock.
I remember driving into Monkton that night, tears streaming down my face, wondering how on earth my life could have changed so quickly. It was, indeed, the saddest time of our lives and we felt very lost, alone and scared.
We continued monitoring and testing later that week and on Dec.19 we learned that Cameron was doing amazing. After much scanning and discussions we were given the joyful results that baby Cameron is a normal 24.5 week baby in every development area. The MRI that I had on Wednesday showed no brain damage or signs of lack of oxygen. His MCA, which is the input levels of blood in his brain that will be monitored for the remainder of the pregnancy have dropped from 60 on Sat. afternoon, to 52 post blood transfusion on Sunday to 37 yesterday....which is within the normal range. He weighed 602 grams, which makes him a viable baby should he be born anytime soon. ...though this is not likely to happen.
We were then only dealing with the very high risks of the remainder of this pregnancy. Due to the hole that was made between Cameron and Coles sacs this is now considered a monoamniotic pregnancy and means that the cords could become compressed at anytime. It is less likely to happen because Cole is not moving around and should it happen it will not likely become an issue till after 28 weeks. As well, anytime that a surgery is done to a pregnant uterus there is always the risk that complications such as infection, membrane rupture or premature labour could occur.
Things continued to improve for the next few weeks. We saw our regular OB in Stratford and prepared to meet our new team in London on Jan.5. Cameron became a VERY active baby and I began to physcially feel a sense of healing. Emotionally things weren't as good and many days were pretty sad for us. Zackary and Brycen, with their normal zest for life combined with their holiday excitement really helped to keep our focus and the help we received from our family, friends, neighbours and counsellors really helped.
Sometimes I think I owe it to everyone to be a bit honest about how I really was doing at times....this is what I wrote on Jan. 2.........
I just can't seem to wrap my head around what has happened to the life I thought I was going to have. I am just over 3 weeks into the hell that is TTTS....it will be 3 weeks today since I had laser surgery in Toronto and 3 weeks tomorrow since we lost our precious baby Cole. I am having such a tough time today, the tears won't stop and I have two other children somewhere in my house that need me and a tiny little trooper inside that needs his mom to be strong and healthy too.
I just can't get it into my head why this has happened. I rationalize sometimes that it's because I wasn't jumping for joy about having twins...not at the start anyway. But I wanted my babies, I wanted to make it work, I wanted to be that 'twin mommy'...the one people stopped in the store to admire their beautiful children who looked exactly alike. I wanted to NOT feel this pain. I get so mad at myself for the feelings I have when I read the TTTS success stories, it seems so cruel of me not to feel joy that others don't have to go through this and I know it could be so much worse...I could have lost them both. And really, that fear is still there...I'm only 26-27 weeks...such a long battle ahead considering all that is still going on inside me. But really, I just time to go back to where they were both kicking and their hearts were both beating. I want my babies to both be alive and safe inside of me. I need to stop crying and feeling so lost, alone, angry and ripped off....but how do I do this???
Early Saturday morning I experienced some issues with fluid leakage and after 2 consultations with Stratford Hospital it was determined that I needed to be sent to a centre with a NICU as they were not sure what was happening but believed that my membranes had ruptured. As St. Joe's inLondon didn't have any beds for Cameron or myself we were sent back to Mt.Sinai via ambulance yesterday morning.
Lots of testing and scanning has been done but it hasn't yet been determined what exactly is going on . It is believed to possibly be a leak of amniotic fluid and discharge from near Cole. The risk here is that due to the hole that was created between the boys during the laser surgery, an infection from Cole's side of the sacs can now travel to Cameron. This, of course, is dangerous to Cameron and can bring on labour as can the small rupture itself. So I am to be hospitalized for monitoring for now and am on antibiotics to control infection. No idea how long this will last or how long I will remain in Toronto as I believe they'll transfer me to London when a bed opens up.
The great news is that Cameron continues to not be affected by any of this....something tells me he is going to be one of the strongest, most independent children I've ever met!!! He now weighs 1lb 8 oz....which is a gain of over 8 oz from when this all began 3.5 weeks ago. He has tons of amniotic fluid...again up from the NONE that he had when they found the TTTS. His heart rate is strong, organs are doing great and he moves all the time. The dr.'s are pleased that my cervix is not changing at all and other than this leak, I am showing no signs of labour. Dr. Ryan did say that we need atleast one more week of growth to really be okay...which leads me to believe that they are pretty certain we will have a fairly premature baby sometime in the next few weeks.
I am feeling very positive about things but am pretty worried. Emotionally I think I am doing better than the last few weeks as I have lots to occupy my mind. Thanks in advance for all of your prayers and thoughts...we definately need all the positive vibes we can get!
Today Geoff and I met with our social worker, Marjorie to discuss some of our concerns and areas of stress. She was really amazing in her support and they will be helping us make a plan and prepare for the arrival of Cameron and our dear angel Cole.
I also had another ultrasound with Dr. Ryan with what I think was surprising results for him. As soon as he started the ultrasound he said 'well darn, that was a rupture, your fluids are definately down'. We talked at length about what that means...that I could spontaneously go into full labour, that I will continue to leak off and on but as long as the fluid levels are acceptable and safe we are okay, that the risk of infection is high and there is no way I am leaving a hospital until Cameron arrives. We even made a birth plan...talk about a scary rate of progress. We've met with paeds but have no been waiting for almost 2 days for a NICU tour. Due to the septostomy, the whole in the membrane separating the babies, and issues around it we were very worried about labour. Our dr. has said that it could be an issue as could the fact that I've had c-section in the past BUT it is best for the baby to a trial of labour to strengthen his lungs even if it means that we still end up with a section due to stess or no progress in labour.
Dr. Ryan is very comfortable with us heading to London for care at St. Joe's at some point soon. They are looking for a spot for us but unfortunately London doesn't have any open NICU beds and won't for a good week or more. They are happier to see us remain here until we reach 28 weeks anyway. This will be kind of the goals we set. 28 weeks is Saturday....and is a big marker in the life of a preterm baby. We just need to get to that point and then set the next goal.
It was a bit scarier to hear this news despite the fact that I was pretty sure it was a fact for days and even more scary to start talking about labour. I keep thinking that if things were different I would still be at work this week, still be chasing my boys arounnd the house and still be thinking about having mid March twin baby boys.
Today I met with another paeditrician to discuss the possible complications for Cameron should he decide he wants to be born now. Initially we had this discussion with another paed doctor who basesd all of her information on a baby of about 27.5 weeks being born. When our paediatrician spoke to me today though, she made it very obvious that we can't consider Cameron a baby of a certain gestational age because he is quite small for his age. Instead we must look at the complications experienced by babies who are 600-700 grams as that is his current weight.
This means things like ventilation for breathing, NG tube for feeding, risk of brain bleeds and a few other complications. Babies born at this size have about a 60% chance of surviving and may have some neurological impairments. This can be further complicated if the baby has had any difficulities in utero.The doctor spoke at length to me about Cameron's brain and the MRI that was done. Though the results of the MRI showed no brain damage there is a chance that the damage or affects of him being anemic after surgery may not show up for 4-6 weeks from the surgery date.
All in all it was a bit of a scary discussion and one that just makes this world I am living in right now more a very realistic and terrifying one.
We can only pray that Cameron will remain inside for a long time and will continue to gain weight quickly.
Good News and Better News!!!!
I've just returned from an ultrasound and have great news. Cameron continues to look great inside. His heart and brain look great, all levels are where they should be in regards to blood flow and rate of flow. His cord flow is where it should be as well. He does have urine in his bladder, lack of it would show signs of inadequate levels of amniotic fluid. His fluid is still low, lower than it was on Tuesday but still at a level that is okay for him as shown by his bladder fullness. The nurse said that all I can do for this is not move around too much and drink lots of fluids...8-10 cups minimum a day....good thing there's a bathroom beside my bed!!!
The even better news is that Cameron is now measuring at 793 grams. The nurse says she is very confident in her measurements and if anything if she is off it will mean he is heavier. We decided together that most likely our Dr. was off on his measurements on Saturday....either that or he's growing at one phenomenal rate!!! This weight level, of course, increases his viability and lessens the chances of serious complications at birth. This weight puts him at about the size of a 26.5 week baby. He is about a week older than that so it appears that he may catch up. Even more astounding is to think that 4 weeks ago yesterday he weighed a mere 408 grams...almost half. It translates to 5.5 weeks growth in 4 weeks. It is still a very risky size to be at....we really need to see him get over 1000 grams to lessen the serious risks for him.
I am up early this morning after a very restless night. I think my mind is on overload thinking of all that has happened in the last month of my life. That's it, just a month. It's seems so strange to me that one month ago right about now I left our house to head to work for the morning and an afternoon of appointments, filled with the anticipation of hopefully finding out if our twins were boys or girls. Little did I know what God had in store for us.
I am feeling pretty sad today just thinking of it and really how could I not be. I didn't ask for any of this but then again does anyone ever ask for tragedy to strike. I look up at the ultrasound picture up there in the corner of this page and the tears roll down my cheeks. It hardly seems fair that those two little boys will never play together, never snuggle up on my lap together for a story or two, never join their big brothers for a 4 man pile up on Daddy and never share a birthday cake together each year.
I often wonder how Cameron will feel about this, will he miss the brother he knew for 22 weeks, the one he grew with, kicked at, bumped into and comforted in his final moments....do unborn babies have that sense? I am comforted by thoughts that Cole's spirit will always be with Cameron, guilding him and strengthening him. Right now, with all that Cameron and I are going through it is definately a comforting thought to think that my baby has his own personal guardian angel.
I am also comforted and put at ease by the conversation we had with Dr. Ryan yesterday. He assured us that in his opinion Cameron has very little counting against him. His opinion is that although he is small for his age, he has been in there for almost 28 weeks and therefore has had that time to develop as he should. He is not concerned about his kidneys or urine production and antipates that even if his amniotic fluid levels drop to nothing he will continue to produce urine. We have also been assured by everyone that we are at the top of the list for a transfer to London as soon as a bed opens.
It was confirmed this morning that I will be moved to St. Joe's in London today.
Even better news though is that Cameron is growing and growing, He now weights 1014 grams...over 1 kg. This is a big marker for babies that are likely to be born preterm...over 1 kg and over 28 weeks. As a comparison to 'normal' development, Cameron's gestational age, according to my calculations, is 28 weeks 2 days and he is measuring 27 weeks 2 days. The doctors say he is 28 weeks 5 days but I've always argued that date. In his last scan a week ago he was 10 days behind so it appears that he is catching up. All his organs checked out great again as did his flow rates in his cord and his brain.
The only bad news, and I use that term loosely, is that there appears to be almost no amniotic fluid surrounding him...which is down from my last scan on Monday. However, this does not seem to be affecting him at all as the signs of problems with low amniotic fluid are issues with growth rate, movements and urine in the bladder all of which are normal in Cameron's case.
So all in all a day filled with great news....what a great birthday present for Daddy!!!
First the most important updates. I've met with my doctor, Dr. Gratton, twice now. He is very nice and was quite happy to finally meet me. He was very concerned about the risks to Cameron due to the septostomy (the hole in the membrane separating Cameron and Cole) as it allows the cords to entangle and compress. So I had a very lengthy ultrasound with two techs and a doctor to check this as well as the usual growth and flow rates. One of the sweetest comments I've heard yet came out during this ultrasound. The tech was describing Cameron's position as gently hugging his brother Cole. I almost cried.
Anyway, there is a lot of concern about the membrane and septostomy and they are pretty sure there isn't anything really dividing the babies anymore. For now this isn't an issue as Cole's cord appears to be in and around him but not wrapped around Cameron. Dr. Gratton's concern is more for delivery and he is not as comfortable with Dr. Ryan's plan and seems to be more comfortable with a c-section.
Cameron continues to do amazing. His growth was relatively similar to the last ultrasound in Toronto….about 25 grams less….so under 1 kilo but close enough it doesn’t matter. Their measurements do put him at a slightly ‘younger’ gestational age, 26 weeks 6 days and I was 28 weeks 3 days at that time…so 10 days or so behind. On a very positive note, yesterday there was a 2cm pocket….but only 1 of those. Today the tech found 2 pockets…the first was very small, 1 cm or so but then she found a 3 cm one. This is not only great news it was also very surprising as the fluid leakage had increased again today….so obviously Cameron is peeing like a trooper!!!!
Today isn't as good of a day for mommy as it seems to be for Cameron. I was up for 4 hours last night as I seem to have some sort of nasty pain that runs down the right side of my pelvis. Last night I woke up to the pain and tons of nausea. The nurses put me on the NST machine which didn't register too much wrong altough there were a few times it seemed to pick up mild contractions. I began having lower back pain and cramps that bordered on mild contractions and they decided to give me IV fluids to see if this would calm things down. It seemed to work somewhat though I was still having the odd mild contraction and had a small amount of pain. After 3.5 hours on the NST machine they finally turned it off and I was able to get a few hours sleep. I feel better today, but am pretty tired. I still have some pain but nothing like last night. They don't seem to know why I am having the pain but think it's from Cameron's position and assume that he has shifted somewhat in there.
I had an ultrasound again this morning and all is well again. Cameron has even more amniotic fluid around him today which is surprising to me as the leakage was way up yesterday. This likely means he's shifted a slight bit and that he's producing more fluid...he's peeing more!!! Hopefully whatever seems to be going on with my body won't affect him and we can keep him in there for a long time.
Not a great day for me again today. This pain seems to have come and settled in for the long haul. The doctor on rounds today spoke to me for awhile about it. They call it a musculoskeletal pain (forgive me for my spelling) and say that although it isn't uncommon in pregnancy, it is rare for it to occur for this length of time. It may be aggravated by the Cameron and Cole's heads both pushing down on my pelvis in the same area. They will be monitoring it and looking into the reasons why it radiates over and across my abdomen at times....trying to figure out if it is any sign of labour. There are some mild contractions registering when I do the non-stress tests but at this point they aren't labour producing. They are also watching for any signs of infection including bladder infection. They will be giving me something for pain which is GREAT!!!! We also discussed the issues with my placenta that were brought up yesterday. The doctor says it does appear that there is a placental lake that has formed and may or may not be related to my laser surgery. A placental lake can form in any pregnancy and really isn't an issue at all...it is just a pooling of fluid or blood that forms while the placenta is forming and from what I understand, it can 'let go' at times causing a bleed that is of no concern to baby or mommy but of course 'freaks' people out. They will be monitoring it as it doesn't appear that it was always there.
And once again, Cameron continues to be a trooper. He's back to having no fluid again...scoring a 6/8 on is BPP (bio-physical profile) which measures his movements, tone, breathing and amniotic fluid. This is the same score he had in the last 2 ultrasounds in Toronto. He's done better here in London until today but again, amniotic fluid is only an issue if he isn't growing well, doesn't produce urine or has issues with cord compression which puts him into stress. So far, none of these are Cameron's issues. So we continue to pray that he keeps on fighting like he has been.
I just met with the neonatologist...the NICU doctor and wanted to share the good and the bad of what we chatted about. The BEST news...Cameron, at his current gestational age, has no more risks of infant mortality than a baby born at full term. This is great news...very much a reassurance to everyone!! The doctor discussed the many interventions that would be needed to help him when he is born...some breathing assistance but not necessarily a ventilator, drugs to help his heart, a feeding tube to receive milk right into his stomach, fluids and antibiotics to assist with stability and prevent infection. Because he was without fluid for awhile due to the TTTS and now again with the amniotic fluid issues he is at a higher risk of having trouble with breathing, with his heart and with his kidneys but there are not real stats the doctor could give us...it's just a matter of waiting for him to arrive and seeing how he is doing. Hopefully that will not happen anytime soon and he'll go to 35 weeks or so which is likely as far as I'll be allowed to carry him.
I am having a sad day today and haven't posted because of this. Sometimes I think people don't want to hear how about the bad days but the reality is that this is my life and the life of Cameron and Cole. We didn't choose it to be this way, never asked for this to happen and yet here we are. Not every day is about Cameron and how well he's doing because there is also another life inside of me...a life that was cut short by a plan greater than any of us are meant to understand, but a life that needs to be honored too. By not acknowledging my sadness, my frustration, my sense of loss, I feel I am not paying tribute to that little boy that I wanted so badly. He will forever be my baby, forever be Geoff's son, forever be Cameron's twin brother, forever be Zackary and Brycen's brother and forever a grandsonm, nephew and cousin. He will forever be the guardian angel for our family and the little spirit that will guide Cameron along his journey both inside while he grows and develops and on the outside as he turns into the wonderful little boy that I know he will be.
Today I met with a social worker to discuss my feelings and to begin to prepare for the arrival of Cole and Cameron. It is very important for me to be prepared (for those that know me well, you know I am an obsessive planner) for their birth and to have plans in place to ensure that the things that are important to us then are taken care of. It will be a very joyous time for us all as Cameron's birth is definately an anticipated one...all I need to do is to see how many people have visited this site, in the 2 weeks it's been going, to know how true this is. But their birth will also be a very bittersweet day for us too as it is the day of hello and goodbye for Baby Cole.
Thank you all for being here for us, for supporting us as we take this journey of hope for both of our babies, for helping us to be joyful and holding us when we are sorrowful. It is so wonderful to have caring farmily, friends, neighbours and co-workers and so important to us.
And just in case you thought I might forget...my daily update is pretty similar to most...Cameron is doing well, he scored 6/8 again on his BPP...due to the lack of fluid. This is of no real concern to anyone as he continues to meet all the rest of the criteria. They may even start doing the ultrasounds every other day if things continue so well. As for me, other than being sad (and feeling totally out of control...they didn't even get my breakfast right here today...I really wish I could go home to Geoff's eggs and bacon LOL!) and being bored and lonely, my pain is subsiding somewhat but should it return, a pain protocol has been set up and I will be given some stronger pain meds to help manage it.
Today we had another ultrasound that showed great results. Cameron scored 8/8 on his BPP...one small pocket of fluid..a 2cmx2cm pocket...just one...but that's all he needs to score a 2 on that part of the BPP test. His MCA was also measured and was just above the 50 percentile for his gestational age. This is good news in general but actually great news in his case as it shows that despite being small, he does have areas that are totally on par for his age. He does continue to measure small but does show growth as far as we know. They will not do a growth scan until 2-3 weeks after the last one was done...so likely not until early next week. If he is not showing any growth or very little growth at that time, then it would mean that he is growth restricted due to the lack of fluid and it would then be determined if he would be better off outside the womb or not. At this point, this is not the scenario they are predicting however.
I did speak to the resident and then the on call doctor about the mixed messages regarding delivery times. They explained that every doctor has their philosophy on the issue of babies in a pPROM (preterm Premature Rupture of Membranes) situation though the general thought is 36 weeks max. In Cameron's case, because of some of the other issues that he has already endured, it may not be best for him to remain inside longer than 34 weeks but that will be evaluated at that time. The general consensus from most of the doctors on this team is that we won't likely make it that far but I think many of them are amazed we've made it this far so who knows.
While Geoff was here today we had a tour of the NICU. The tour was given to us by the admitting nurse which is our old next door neighbour from Parkhill. She showed us a few babies that would likely compare to Cameron when he is born. Due to his gestational age they are no longer thinking he will need ventilation unless there is some lung issues caused by the lack of fluid during the TTTS situation or now with pPROM. He will most likely need a feeding tube as babies usually are not able to co-ordinate sucking, swallowing and breathing until 34-36 weeks and his size may become a factor here. He will, of course, require lots of monitoring regardless of what age he is born at with special attention being paid to his kidneys, lungs, brain and heart as all can be affected by both the TTTS and pPROM.
As for me, I am doing great...no pain, no real boredom today and I have also passed some of the testing I had to have done for some of the prenatal screenng. I've been blessed with lots of visitors planning to come, which really helps to pass the time. Now if only I could get better food I'd be all set!!!
A bit of a crazy day here in St. Joe's...but nothing worriesome...just lots of tests and consults combined with surprise visitors and missing meals...a very late breakfast for me!!!
I had an ultrasound this morning and all was well there...an 8/8 on Cameron's BPP...a very small pocket of fluid located off to the side but a pocket all the same. It was a bit more difficult to get some of the measurements today as he was very active in there. He has changed positions somewhat too...from one side to the other.
I had a consult with the new doctor on rounds and spoke to him about the outcomes and affects of the lack of fluid on Cameron. He believes there will be very few...perhaps some breathing issues. This is usually not such a concern for babies if the rupture happens when ours did...at 27 weeks. However, because Cameron was measuring 2-3 weeks behind then it could mean more to his lung development. The lack of fluid can also affect his motor development and cause some abnormalities in his appearence at birth (flatter features, constricted arms and legs, feet turned in) but all of these will correct themselves over time. An interesting thing that I learned that appears to be somewhat worrisome to the team is that Cole's placenta is on the left side of my uterus but he is not located down in the right quadrant and Cameron has the right side of the placenta and he is in the middle and to the left. This likely means that the septostomy in the membrane dividing them has completely opened up. This poses some risks in delivery but will be dealt with at the time unless it appears that there is cord entanglement that is causing Cameron stress. The largest concern that remains is the risk of infection which could occur at any time and will mean immediate delivery. For now, all remains well and everyone is pleased with our progress..30 days since the rupture!!!
I also had a consult with my social worker today. We continue to work through some of the things that are causing me stress and have worked some more on preparing for the arrival of both of our boys. We spent a long time talking about Cole and what is important to us regarding his arrival. I feel confident that this team will help us to make good choices and will allow us to say our final goodbyes to our little angel. My eyes well up with tears just writing that so I know it is going to be a very tough time for us and am glad we have the support in place to help us with that.
For now, I continue my daily motions here on the antenatal floor and enjoy the visitors (tons today!!!) and continue to feel blessed by the love and support of my family and friends.
So just when I get confident and think everything is stable and won't be changing my body and Cameron decide to pull some tricks on me.
Last night at bedtime I noticed that the amniotic fluid leakage was blood tinged. The nurse wasn't concerned but decided to check Cameron's heart rate just to be sure. He normally has a heart rate of 140 or so and at this check he was up well over 170. They continued to watch it for a few minutes assuming that it was an acceleration, common in babies. However, his heart rate remained between 170 and 180 for well over 5 minutes. They called the resident on call who had them monitor it for the next 30 minutes and the get back to them. It stayed up that high for another 5 minutes and then dropped to 165-170 for another 15 minutes before dropping down to the normal range and then accelerating up and down (in the normal healthy pattern) for the remainder of the time. I had some cramping like contractions that they could detect at this time too. When things calmed down they had me go to sleep but the blood tinged leakage continued all night and today as well. From 4:30-6:30 I had cramping that wouldn't go away but no contractions again.
The doctors on rounds today did not seem concerned about this too much though they did say they will be paying more attention to me for now. I asked why this would have happened and the basic answer is likely some irritation of the uterus which may or may not be a problem. It isn't necessarily indicative of labour or an infection but could be the sign of things to come. The blood can indicate problems with the placenta or changes in the cervix but until it becomes heavier than it is, it isn't a concern.
This morning I had a non stress test, as per usual, and all was well with little Cameron. So we'll just sit back and wait to see what the next few days bring...and take it VERY easy for today.
All is well today. Some change for the better from yesterday in that the fluid appears to be a bit less blood tinged, the cramping was either not there last night or I was just too tired to feel them and Cameron's heart rate has been consistantly below 150. I am having more cramping today but I did just have tons of uterine palpatations by a team of medical students so this may have caused that. During this 'interview' and educational experience for them, I had another ultrasound and today there is quite a few pockets of fluid around Cameron...one measuring almost 4cm. The doctor also detected that Cameron's head is starting to engage somewhat but that Cole is still furthest down in position.
Yesterday on rounds this same doctor spoke to me at length about what the blood tinged fluid means. His feeling is that likely that I am beginning to contract (thus the cramps) somewhat and my cervix is changing and thinning causing the bleeding. It may also be the placenta in the area near Cole as it will break down over time however he is not leaning towards this scenario so much. He feels Cameron's heart rate being elevated was just him being active and happy though he did say that they would be keeping an eye on it. Babies can have heart rates this high for lengthy periods of time though it isn't too common. If it was to stay up for more than an hour they would be sending me off to the delivery room for observation and likely inducing me or doing a c-section.
So all in all not really a change from yesterday but rather continuing to be stable and now more informed as to what it all means.
It seems I am doing a good job of being a human incubator and the 2.5 pounds I gained this week went the right place as baby Cameron has grown 1 lb 8 oz since we arrived at St. Joe's almost 3 weeks ago. Cameron now weighs 3lb 10 oz and is now around the 45 percentile for his gestational age. He was between the 10th and the 15th at his last scan. What this means the most is that my placenta is still doing it's job and that the lack of fluid is not affecting his growth. He also scored an 8/8 on his BPP today...everything looked great. The pocket of fluid the doctor saw yesterday wasn't actually amniotic fluid but the placenta lake (the pocket of blood) that they found a few weeks ago. But the tech still found a small pocket of fluid and that is good news.
The only not so good news is that I was cramping and contracting again last night but after an hour or so things seemed to die off and then all was well. Today the cramps have been better, only a few and a few contractions too so hopefully this means that Cameron will stay in and keep cooking for a few more weeks. I am now 31 and a half weeks, almost 5 weeks post rupture and it is 8 weeks today since we found out our babies had Twin to Twin Transfusion Syndrome. I've learned so much about the horrible world of TTTS since then, experienced so much in the medical world and most importantly realized how loved and cared we all are by our friends and family.
So here I go again...I just typed a whole entry and it disappeared on me!!! I am feeling good about things today, my outlook as changed thanks to a few reasons...an outing, tons of visitors but mostly a sign that I asked for to help me find a focus in my frustration and desire for this journey to move to the next stage.
Yesterday when my spirits were down I asked God to help me, to give me a sign to show me that my boredom, homesickness and anxiety about the birth (and the desire to speed this process up) were selfish and not where my head should be. I should add in this information though...I don't ask God for much these days...I pray in my own way but try to only ask him to guide and help me. The night before the surgery in December, the night we learned about TTTS, I asked God to be with both my boys and to save them both. The outcome wasn't what I asked for, for reasons I know now that I am not meant to understand this side of Heaven. And so I don't ask for much like this because I don't want to be disappointed and have my faith questioned in my head. I trust in God to give me what He feels is best. But yesterday I asked for a sign and later on felt myself drawn to another place on the TTTS foundations message board that I hadn't looked at yet. It was the NICU support board and I read a post from a mom about her boys.
They were born at 31 weeks 2 days and her donor baby was 3 lbs 6 oz. He suffered heart issues and kidney issues at birth, was ventilated and then on the CPAP for a few weeks. Things seemed to be going well for him and then when he was 3 weeks old they discovered he had 2 brain bleeds and they were told his disabilties would be severe. This really hit home for me because at 31weeks 4 days Cameron was 3lbs 10 oz and he too is a donor baby who like this little one was 'stuck' with no amniotic fluid. It made me realize that although everyone says 32 weeks, or close to it, is the big 'safe' place to get to in preterm births, it isn't always safe. That 32 week marker is based on babes who are 'just' preterm.....not ones compromised by other situations like TTTS or pPROM. Their are no guarantees that if Cameron was born today or anytime soon that his fate would be any different from this other baby's.
I need to remind myself of these things when times get tough, when I am homesick, bored, restless and full of the desrire for things to move forward. It will happen when it is meant to happen, when Cameron is ready to face the world and when God is ready for Geoff and I to be parents again and to meet our dear sweet boys.
And so until then I will sit back and relax. I mean really, when will I get this kind of spoiling again...no cleaning, no cooking, no laundry and someone available to answer all my questions and ease my mind. Enjoy it right!!!
It has been a very long day filled with meetings with my doctor and social worker...though no worries, nothing is really wrong. There have been a few test results that have concerned us....more than our doctors I think and Geoff and I decided that he needed to meet with everyone with me...up until this point he had not met anyone involved in my care here so it was about time. He felt much better after he had talked to Dr. Gratton, the nurse practioner and the social worker.
Now to the reasons for our concerns. Cameron's MCA has been being monitored over the past few weeks. It was done when we were in Toronto but seemed to have been missed here for the first week or so that we were here. The MCA (medial cranial artery) is the artery they measure to detect if a baby is anemic or has low hemoglobin. They measure the velocity of the blood going through this artery. If it is high then it means that the blood volume is lower than it should be, meaning he is anemic. Up until this week whenever this test was done the results were in the 50th percentile of so but on Monday the result came back in the 95th percentile which is just beyond the level for what is considered normal. The doctor said he felt it was a fluke and likely due Cameron being a very active baby…which would mean that his blood would be moving faster making it seem thinner. The only other reason for this result would be that the placenta was beginning to not function as it should. So he ordered the test to be repeated yesterday.
The test result came back slightly higher than the first day and so we met again today to discuss this. Dr. Gratton’s feeling is that Cameron is not anemic, that there is no other indicator that he is (all the other tests that would show this are negative) and there really isn’t any way he could become anemic. But he’s going to continue to do this test on me every few days and if the results continue to be high and get higher then he will be investigating it further. He will also be ordering blood work to check for any other reason this could be happening. The whole situation has us a bit worried but know that our medical team will keep a good eye on it.
Our social worker is amazing and supportive and is helping us deal with the stress of this pregnancy and hospitalization as well as our grief and sadness. We spent a lot of time with her today planning for delivery and for our moments of hello and goodbye with Cole. It is very important to us to have moments with Cole and Cameron together, our only moments that we will ever get to do this. All in all we felt much better after all of our meetings and know we are doing the best job we can at the moment for everyone in our family.
Just wanted to let you everyone know that I did get the results from the MCA test yesterday and the blood velocity rate was in the 62nd percentile....slightly higher than it had been but not too bad. What I thought I heard yesterday was 62 but assumed that was the the velocity rate...which would still be within the normal range...placing him at around the 90-95th percentile. This may indeed be the correct result as I did ask the resident this morning at 7:00 am....when I was pretty sleepy and she didn't have my chart with her. I will be certain to ask again to ensure I am getting accurate info but for now, regardless of the number, he is within the range for normal.
Today is actually a not so bad day for me. I have a hard time before with the 'marker' days...and today marks 2 months since we lost Cole. I am not sure if the fact that I am not as sad as other times means I am coming to terms with it more or if it's just that I spent a lot of time earlier in the week shedding tears about it. I still find it so hard to believe what has happened our lives in 2 short months. I feel so sad that we have to go through this loss but also feel a sense of loss on what I've missed out in the life of my family. I will happy when it is all over and we can grieve this unbelievable loss and move on to a much better place for all of us.
The end is in sight.....the doctor on rounds this week told me this today!!! He feels that 34 weeks is far enough to take this pregnancy given all I've been through. I overheard him talking to the residents about a study he was involved in that showed that there are no benefits to babies in pPROM situations if they are kept in utero after 34 weeks and that in some cases it can be detrimental. The feeling by some of the doctors on this team as well as the nurse practitioner is that we've done so well and gone so far....been through enough...and it's soon time to call it quits. The plan at this point is to talk about the factors involved such as growth, health and my anxiety and hopefully have a date picked out by the end of the week.
As for Cameron today...he didn't do as well with his ultrasound (BPP) today as he has been. He failed for fluid, a given, and for practice breathing. They immediately ordered my NST to be done right away....which he passed in 10 minutes. So basically he is doing fine but this may be indicative of things to come in regards to his stress level. I wasn't told the results of the MCA or dopplers but should find those out tomorrow.
It has now been confirmed that we will welcome our babies into the world next week. We are not totally sure of the day but most likely it will be Thursday and they will be born by c-section. Geoff and I had a tour of the operating suite and recovery room and had the whole process explained to us. It seems very unbelievable that this part of our journey is almost over. Exciting, but unbelievable. It's also sad and bittersweet but the sense of closure will be so good for both of us.
Today I got the test results from yesterday. The dopplers (blood flow rates done on the umbillical artery) came back in the normal range but the MCA was back at the 95th percentile again. Dr. Richardson, the rounding doctor this week, does not feel that activity levels in a baby would affect this test result significantly so he feels it is a true reading. However in saying this he also feels that because the dopplers are normal it is not likely that there is any great chance of significant anemia happening and since we are looking at a delivery date in about a weeks time, it isn't something to be too concerned about. He will continue to monitor it however. They may do another growth scan before the delivery date but the outcome of it will not impact the decision to deliver and will only be used as a tool for determining Cameron's possible health at birth.
We can hardly wait to meet Cameron and hold our boys together....hopefully Cameron will be stable enough to allow us to do this. We would like to spend some time with both of them, marvellng in the miracle that is their life and saying our heartfelt hellos to them both and our goodbyes to our dear sweet Cole.
One more week...just one more week!!!! Cameron and Cole will be welcomed into our arms next Friday morning. This stage of our journey, all 79 days of it, will be over then and we can move into the next stage. It's hard to believe that the boys that were due in April will be born in February.
I know that the next week will be a mixed bag of emotions for Geoff and I...the past week or so has already shown us this. I am so proud of Geoff for the strength and courage he has shown as he prepares for arrival of our angel and the tributes we will make for sweet Cole. I am very certain that I could not do what he is doing with the strength he is showing. I am often told by friends and family that they are in awe of the strength I have shown during our journey but I am in awe of my husband and all that he has done and continues to do for our whole family. This journey has been the hardest thing I've ever experienced but it has taught me so much about the love that we share with each other, with all of our boys and with our friends and family. It has also shown me the love that God has for us will help us to endure all things.
Today I celebrate Cameron and his strength and endurance. His tests from yesterday were fairly typical of his latest....he got 6/8 on his BPP...fluid being his only issue. His MCA continues to be high...around the 95th percentile and his dopplers were more difficult to get this time, perhaps because he was active. The doctor indicated that his dopplers actually read a bit low on an earlier scan, on the same day that his MCA was high...which he says makes no sense at all. If the rates were all high it would indicate anemia. His feeling is that there is nothing serious going on but it all warrants further observation and delivery is likely the best option to discovering what really is going on. We will meet with the NICU doctors next week to discuss the interventions that may need to be done for him. I can hardly wait to meet this little miracle and hold him safely in my arms.
I can also hardly wait to hold my 'big boys' in the comfort of our own home. I spoke to them both tonight. For Brycen, being at Grandma and Papa's is a whole adventure and he can hardly wait to share it with me..."you bring yours bading suit to Gramma's hot tub mom and I gonna have sleepover wif you there 'k Mom". For Zack, life isn't as happy as that....he just wants to be home with Daddy right now and seems very sad and lonely. Well chin up Mr. Zack cause Mommy will be home (atleast at night) with you in 10 days or so...and she can hardly wait!!!!
I apologize for this late entry but the internet was down here and then I tried to do an entry earlier and the computer 'ate' it!!! I almost didn't put this info on here and in about 18 hours all the questions we have about Cameron's health will be answered. However here is what we learned from the NICU doctor yesterday.
The worst case scenario would be that he would need intubation and full ventilation and there is 10-15% chance that will happen. The most likely scenario will be that he will need CPAP which is a ventilation at the nose with oxygen and pressure that assists babies to learn to breath. There is an 80-90% chance that he will have this type of support. We are guaranteed that he will need to have some oxygen which if nothing else it will be done with a nasal canula. The concern about the breathing is because of the lack of fluid that he had due to the TTTS at critical lung development time as well as again after the rupture. He will also need to be fed by a tube into his stomach called an NG tube. This will hopefully only last a week or so before we can start feeding him orally. It is difficult for preterm babies to swallow, suck and breath and is a skill that needs to be mastered. Hopefully he will tolerate his feeds well and will not end up with any complications. He will be on an IV for fluids and antibiotics and will be in an incubator to regulate his temperature as well as various monitors. He will be watched for signs of infection and brain bleeds. They have told us to be prepared for him to be here for atleast 10 days at which point they will hopefully move him Stratford for the remainder of his hospital stay...likely 3+ weeks in total.
We are very excited to meet this little trooper and see just what of these interventions will be his fate. I am finding myself filled with lots of anxiety and emotion as the hours draw to a close. It doesn't seem to take much to make me cry...last night it was a comment of admiration made to Geoff about our 'big boys' and how strong and wonderful they've been. I know tomorrow will be a very tough day but in the end I am pretty sure my joy will outweigh my sorrow.
Please keep us all in your thoughts and prayers tomorrow. I will try to update you near the end of the day....or have Geoff do it for me.
Thanks for your continued support.
Every good and perfect gift comes from Above
We are blessed with twins to cherish and love
Born together to grow apart
One in our hands and one in our heart
With great joy and great sorrow
Jodie and Geoff Tummers
And our children Zackary and Brycen
announce the arrival of our twins on February 26, 2009
Born into our hands
Cameron Cole Gregory
4 lbs 1.5 oz
Born into God’s Hands
Cole Edward Ryan
became an angel Dec. 13/08
grew his wings Feb. 26, 2009
After a very uneventful c-section, our boys entered the world with Cameron protesting loudly...what a blessed sound to our ears. He is doing amazing. His apgars were the highest yet of any of our boys and he was the first of our children to REALLY scream at delivery. The screaming is such a great sign of good lung development and he has surprised us all but not needing anything but free flow oxygen (a small mask like device held near his mouth and nose) at birth. They have warned us that this could change especially once we start holding and feeding him but so far he's breathing great on his own. His vitals seem good though he has had some higher blood pressures as well as some respiration issues. He's already sucking strong on his soother and they will likely start feeding him through his NG tube today...hopefully breastmilk. If all goes well I may be able to hold him later today and possibly even see if he will attemtp any breastfeeding. He amazes us with his fiesty spirit and strength. He was much smaller than we had thought...under the 10th percentile for his weight but his breathing is so much better than anticipated.
We spent some time shortly after their arrival with Cole as well. It was very tough on us all. Geoff and I as well as my parents had a chance to hold him though I only seem to have a picture of me with him. Later last night we visited with both our boys and had our final moments with Cole as Geoff and I said our hellos and our goodbyes, shared our dreams for his life with him and told him how so very much he was and always will be loved.
Thank you everyone for your kind words, prayers and support over the last 11 weeks. Keep on praying for both of our boys and our whole family as we work at bringing Cameron home and welcoming Cole's spirit into our house.
Cameron continues to do amazing...especially for such a little peep. He's a bit more little now too...last night his nurse weighed him and he was 3lbs 13.5 oz. He's beginning to receive breastmilk through his NG tube and not only is he tolerating it well, he's starting to show signs of hunger closer to feeding time....fussing and even some rooting. They've given him some drops of milk in his mouth and he just smacks his lips!!! Right now he's getting 5ml every 3 hours and that may be increased today. The nurse is also going to have me 'practice breastfeeding with him'...we will do it at a time when I have nothing for him to eat so that he doesn't struggle with sucking, swallowing and breathing at the same time...and then choke. He will just practice sucking and breathing and I will learn how to hold a baby this tiny to nurse him. They also want to wait until my milk comes in as colostrum can be harder to swallow as it is thicker.
We met with one of the doctors at the NICU yesterday and she explained Cameron's level of care and areas of concern right now. When he was born they discovered a 'laceration' on his right arm near the arm pit. It was definately something that occured in utero and they aren't sure if it could have occured during the laser surgery or what...they've never seen anything like it. They are treating it with ointment and keeping it covered so as to prevent to infection.
She explained to us that because Cameron was without fluid for such a long time and was unable to stretch and move much his arms and legs are very consrricted. They will have physio work with him and 'unlock' his elbows and knees but this may take awhile to occur. She also told us that because he was the donor baby in TTTS he was/is more susceptible to 'problems within his brain'...we weren't really given a lot more info than this but believe that we are back to the issues around being anemic and it causing brain damage. They will be doing an ultrasound of his brain today. All premature babies have head ultrasounds as well to check for brain bleeds.
They, and we, are extremely happy with his progress so far. If all continues the way it is going the only thing we will need to worry/wait for is him to gain weight...he will need to be over 5 lbs in order to be discharged though he may eventually be transfered to Stratford.
Just a short message today about some of the great things Cameron is doing..and a few changes to his status.
Yesterday he was having difficulty keeping his IV in as his veins collapsed 2 times. His IV is now in his head which is difficult to imagine and hard to look at sometimes. It doesn't seem to bug him too much though. He also was having diffiiculty with his billirubbin and is now under the lights having photo therapy. Because of this he needs to be 'naked' again and the incubator is turned up to a warmer temperature. He had been relaxing in there all swaddled up which kept him from moving. Now he's wiggling all over the place and being very active. He even wiggles forwards when he's on his stomach.
He has been spending time out of his incubator each day snuggling skin to skin with Geoff or I. This is called kangaroo care. He seems to love it and calms down and goes right to sleep. Yesterday we had him at the breast doing some 'practice' feeds...really just sucking but getting nothing. Today the nurse had me try when there was milk for him to get and he LOVED it...he even managed to get about 4 ml of mik. What an accomplishment for a baby so young and small. The hope is that we will continue to try this a few times each day in hopes that he'll soon get a full feed at the breast and not through his tube. He's now getting 20 ml every three hours and shows signs of hunger just before it's feeding time....which is right now so off I go to see what he can get on his own this time......update...he drank 8 ml this time!!!!
I thought I'd just write up a quick note before I pack up all my stuff and move back home!!!! After 58 days away it seems very strange to be going back. I won't miss the hospital but will sure miss some of the great nurses and the great friends I've met here. After 2 hospitals, 7 roomates, 5 different rooms and countless blood tests, ultrasounds and NST's I am ready to leave. The hardest thing about leaving is that I am leaving my dear sweet little peep behind.
Cameron is doing amazing. Although he has lost a bit more weight, he's now 3lbs 12 oz, he's doing extremely well at breastfeeding. He nursed this morning for 20 minutes and got 18 ml and this afternoon he nursed for 10-15 minutes and got 10 ml. His full feeds through the tube are 24 ml right now so it's amazing that he's getting so much on his own. His blood sugar was low this morning so his IV glucose solution has been increased for now. He is still doing photo therapy as his billirubbin is still high. My hope and plan is to be here everyday so that I can nurse him atleast once a day but hopefully twice.
As for me, I have an feeling a bit more like myself though I am moving slow and am very tender yet. I have an infection in my incision and surrounding tissue but nothing worrisome. My biggest issue seems to be the sausage feet I now have...anyone have any huge sandals I can wear!!!
I will update some more again later when I get to London as I am heading there in a little while for the next 4 days. If you want to come and meet our little peep, visiting hours are between 2 and 7. I should be around most days during that time though I may be in one of the lounges getting caught up on paperwork..ugggg...reality sets in, I'm so far behind!!!
Cameron didn't have as good of a day yesterday. He seemed to nurse well but only took in 2 ml which was very discouraging to me. He also only gained 5 grams in two days. It's the first time he's gained BUT....the longer it takes to gain, the harder it will be for him to move to Stratford or come home. He needs to be over 1800 gms to be out of the incubator...he's at 1705 right now. Stratford will likely not take him till he's in an open air cot. Because of his fatigue and lack of gaining the nurse felt yesterday that one feeding and time out with mommy was enough so I didn't get to have a lot of time with him. This is hard for me but I know is for the best...and since I'll be there all weekend I am sure I'll get lots of time with him.
Our wee man is now just over a week old and is finally gaining some weight. He weighs 1755 grams...about 3lbs 13 oz I think. He is much more awake and alert in the last two days...he's even lifting his tiny head when he snuggles with mommy. We're still working at breastfeeding though he doesn't seem to be getting as much lately as he once was. They continue to feed him through is NG tube and have now added a fortifier to his feeds to help him gain weight as they are concerned about his slow weight gain. His blood sugar continues to be stable as does his bilirubbin so no other interventions other than tube feeds. They started physio with him yesterday. He has about 6 exercises that need to be done 4 times a day for about 10 minutes. This will help to loosen up his tight, constricted muscles.
They have contacted Stratford hospital to see about transfering him there but at this point there are no beds available for him. Funny that we waited weeks to get to London and now we have to wait to leave!!!
After a day away due to a cold, I was pretty happy to arrive to find my little peep in a big boy bed. I've added some pictures of him in his new bed on facebook...check for the link below.
I missed him so much and apparently he missed me too as he seems to have forgotten how to breastfeed. It didn't go well at all at noon so we'll try again at 3 and see how it goes then. I am pretty discouraged right now especially because the nurse, who is also a lactation consultant, started talking about bottle feeding him. I want him to eat on his own but feel it's too soon to introduce the bottle, especially when he's less than 24 hours out of the incubator and had more than 36 hours away from breastfeeding. Daddy is coming up later to talk some sense into Cameron...as he and my Dad both say....'you come from a long line of 'boob men' Cameron, this will come naturally to you'!!!!
The great news is that he is in an open air cot because he now weighs more than his birth weight...he's 1880 grams...I believe this works out to 4lbs 2.5 oz...or so. I think he seems much sleepier today though as he is now responsible for maintaining his own temperature. My guess is that it will take a few days for his alertness to return.
Just a very quick update to tell you that we are moving to Stratford today. Cameron is on his way now and I am doing up a few things, packing up and heading there myself. I am sad to leave St. Joes' in a way...it's been home for almost 2 months but am so happy to be closer to home.
I apologize profusely for the lack of updates lately. Life is crazy busy now that we are closer to home. But it's crazy for fabulous reasons...so here's the quick version of updates and with any luck I'll have way more time at home next week to add more pics and info.
We arrived in Stratford on Friday and his weigh in then was 1990 grams. Just before we left London we learned that the scale might have been off in his pre and post weights for his feedings and that he likely was taking more at the breast then we thought. Since Stratford doesn't do these weights we have to rely on his cues to tell us how he's doing...and boy is he cueing us. Many of his feeds now happen before 'feeding time' because he's showing us he's ready. On the weekend I was there 2 times a day to feed him, always with a non oral feed in between. Yesterday his nurse and doctor decided to try to stop with the tube feeds and see how he did. He gained and is over 2 kilos so oral feeding is now all that he does...the NG tube came out last night!!!!
Today I was at the hospital all day and Cameron was only given the option of breastfeeding... no bottle top ups after a feed like he had yesterday. I expected that he would be hungry more often as he likely wouldn't get a full feed but I was wrong!!! He seems to be doing great on his own. Our hope is that we can be organized enough to have me at the hospital all day tomorrow, home for supper and then I'll move in at night and remain there until Cameron is ready to come home. He needs to be orally feeding, mostly at the breast for atleast 48 hours and holding his weight or gaining. The thought is that he will be at this point by the end of the week or on the weekend....which means that this stage of our journey could be over by Saturday!!!
The only other 'intervention' we have right now is physio which is done atleast twice a day by physiotherapists. Cameron will remain in the care of physiotherapist for the next few months for sure but we don't know at this point how often he'll have to come to see her or if splints will be needed to help straighten his elbows, wrists and knees.
Everyone in our family is VERY excited that baby Cameron will soon be home. Until then, you can visit us at the hospital from 12-2 and 6-8.
I have tons to update but not tons of time to do it....how do I get more than 24 hours in to one day???
First of all...CAMERON IS HOME!!!! Yesterday we checked out of the hospital after a 22 day stay for Cameron...and a combined stay of 76 days for us both. And it feels AWESOME!!! But tiring too as Cameron is feeding every 2.5 to 3.5 hours and thinks he needs to be held all night!!!
So to catch you up on our week. Things went amazingly well once I was at the hospital and we could try only breastfeeding and no bottles. From Tuesday night to yesterday he had only 1 bottle...and that was only given so Geoff and I could go shopping for some baby purchases that just didn't seem to happen with all the hospital time we've had. It's amazing how much you don't need though when it is your third child. I spent an hour going through clothes the other night here and let's just say that Cameron will not need any clothes till he's 4 or 5!!! The only baby things we need (ed) to buy were things to help with the size of our wee peep....a car seat insert, small diapers, preemie clothes (though he won't need those long). We do need to get a few more things yet to decorate his Thomas the Train room (Brycen will be so jealous!!!) as well as a sling carrier...since he loves to be held and other such things but clothes will definately not be something this child needs!!!
He weighs about 4lbs 12 oz now. His weight gain has slowed drastically since he began to only breastfeed but he is still gaining. He will be monitored by the dietician at Stratford General and may be put on a formula supplement to help him gain weight. The physiotherapist is very happy with his development and the increase in his flexion. We will be doing exercises at home twice a day for many months and will see her every few weeks.
We are so very happy to have our lives slowly returning to normal. I have so much more I want to write, so many thank yous to say and so many thoughts to share...but I am out of time as we are planning our first trip to Papa's farm in a few minutes.
Cameron continues to do well and seems to be adjusting to home life...he doesn't even wake when his noisy brothers run around the house playing Aliens!!
On Tuesday I took him to see the dietician. Unfortunately according to their scale he had lost 5 grams in the 4 days since his last hospital weigh in. Even if the doctor's office scale was more accurate, at a gain of 20 grams, the dietician was concerned. He is now having 2 bottles a day that are fortified with extra calories by adding formula to breast milk. He seems to like these bottles okay though they don't always stay down as well as breastfeeding. They do, however, help him to sleep better and longer at night (YES!!!!). Today we went to the hospital for another weigh in and he was up 55 grams....to 2170 grams or 4lbs 12.5 ounces. I was so happy to hear that the weight was going in the right direction. My guess is that it isn't quite enough yet and his bottles will be fortified more next week when we meet with Aimee again.
His physio continues to be a struggle....to remember to do it and endure the screaming when I do. It is so hard to make him so uncomfortable but I know it is very important. Our paeditrician in Stratford told us that it will be important to monitor all of these issues for atleast 6 months at which time the signs of any concerns such as cerebral palsy will lessen or disappear completely. Until then, bring on the earplugs!!!
Our boys are very happy to have Baby Cameron home. They are full of love and adoration for him and can't get enough of him. It is pretty awesome for me to have us all under one roof.
Well all of us except one...and I continue to struggle with this. It has really come to light again for both Geoff and I as we have learned in the last few days that a friend that became very dear to me while at St. Joe's is struggling with her twin girls and Cole will soon be joined in Heaven by a new friend. It is so awful that someone else has to experience the pain that the loss of a twin creates and even more so for them as they have held their sweet girl and enjoyed the moments that were never ours to share with Cole.
My friend and I spent a lot of time discussing today how you raise that twin without his or her partner... especially when they are identical. We both wondered out loud why we have to go through this. If we were only meant to have one of our twins home with us then why did we have to have a twin pregnancy in the first place...why did we need to experience this pain and loss. There are no definate answers to this but one of her aunts said it best....our surviving babies wouldn't be here if it wasn't for the protection of their guardian angel. I am so grateful for the protection that Cole has showered on Cameron and will continue to for the rest of his life. I am also so grateful for the timing of our diagnosis, ultrasounds, surgery and other medical interventions and most of all, for all the support of the medical teams that both Cameron and I had. It is unbelievable how close we came to losing Cameron and his life is only possible because his brother kept him safe. And as our sweet little friends struggle in the NICU in London, we know that the survivor twins Angel will be what keeps her strong and healthy.
We are also so very grateful for all the support we have experienced in our family, friends, neighbours, community and the extended communities our families belong to. When I see the number of visitors to this site I know that we are so truly blessed to have you all in our lives. We thank you for the visits, calls, food, gifts, money, places to stay, rides to hospitals, help with our boys, cleaning of our house etc. that have happened and continue to happen. We couldn't do it without you and your ongoing support. I hope that someday we can repay your kindness and show you how much you mean to us.