~LaBelleDame.com~Jewelry to nurture and support the spirit~

~the following links are to a wonderful website which provides beautiful keepsake jewelry for mothers, grandmothers, aunts.....and also offer cards and links to support resources.

For every purchase made by following one of these links, I will receive a 15% discount which I am planning to put towards the purchase of items for recipients of my Nimkee-Blessings Memorial gift bags for families with newborns at the NICU (Neonatal Intensive Care Unit) of Toronto, Sick Kids Hospital.


Thanks in advance~Melissa Roy, project leader for Nimkee Blessings


Miscarriage and Infant Loss Memorial Jewelry:






Miscarriage, Stillbirth and Infant Loss Jewelry -Customised jewelry to celebrate the life of a child lost in miscarriage, stillbirth and infant loss. Each piece is created using carefully selected symbols to help support the grieving parent after the loss of a baby.





Fertility Jewelry:



Pregnancy Jewelry:



Memorial Jewelry -Customised jewelry to celebrate the life of a loved one. Each piece is created using carefully selected symbols to help support the grieving process, and life after loss.


Fertility Jewelry - Each piece is created using carefully selected symbols and gemstones to help support the couple who is trying to conceive. Sensitive pieces make wonderful gifts for those who must walk a longer road to get the baby they dream of.


Pregnancy and Birth Jewelry -Customised jewelry to celebrate and support your pregnancy and birth. Created using carefully selected gemstones and symbols to honour this exciting time!


Pet Memorial Jewelry - Pet Loss - Cat and Dog Sympathy Gifts
Pet memorial jewelry created to keep your cat and dog's memory close after the loss of a pet. Touching pet loss sympathy gifts. Free online pet memorials

Could be last update before Bennett's arrival

Monday, March 26, 2007

Current mood: anxious Category: Life Hello all, I saw my doc this afternoon and he says things are progressing well. Infact, he thinks I may deliver in the next 24 hrs. He did try and help that along, and so far I have been having regular contractions since then, but they are not increasing in frequency or duration, so I don't think anything is about to happen in the next hour or two........ I need some sleep first! Anyway, he also told me to bring my suitcase with me to my next appointment on Wednesday morning as he will be sending me to the hospital site to have my labor induced. So, at the latest.......Wednesday is the day! Wish me luck......rub the rabbit's foot.....pray!!!!!! OR whatever it is that you do for luck! Thanks again & again for all your luv and support, Melissa & Bennett :O)

March 21, another update

Wednesday, March 21, 2007

Current mood: anxious Category: Goals, Plans, Hopes It's that time again. Bennett is behaving himself wonderfully! We saw the doc this morning, and everything is going ok. My fluid levels have not dropped anymore since last week, so that is great news. I am to see the doc again on Monday as he wants to keep a closer eye on him now to enable me to deliver a healthy baby boy. Last evening I attended a workshop at Mt. Sinai where Bennett is to be born. It was a presentation about ventilators, respiratory therapy, etc....... It was very informative and I am glad I went. It is so much better to be as prepared as one can be prior to such a nervewracking delivery situation such as ours is going to be. We only have 6 more days until my due date, but the docs still have no plans to deliver on a specific date. We are going to allow Bennett to decide his own birthday......as nature intended. He is as stubborn as his mom! I had a wonderful visit with my boys over the last weekend. It is so strange to be here now without Tanner, but I know he is well cared for and happy to be with his grandma and brothers again. I will see them again soon as I believe my mom will bring them back to see me following Bennett's arrival. The boys will not likely get to see their baby brother, but I will get to see them and that is what matters the most to me right now. I have been keeping busy......time is going by so quickly here. Hurry up spring!......it has been cold way too long! All our love to you wonderful followers, supporters, friends....... Melissa, Bennett & family

March 14th update

Wednesday, March 14, 2007

Current mood: anxious Category: Goals, Plans, Hopes Time for another update. Bennett is staying put just as I requested.......but it is now time for a change in those plans. I attended an appointment today where I had another scan. Bennett seems to be doing well, but my fluid level is a bit lower than it should be. No alarm bells yet, but I will be requiring an increase in doc appointments to make sure everything is fine. Bennett's diaphragmatic hernia is not getting any worse......so that is still great news! His bladder was full during the test, so the doc said that means his kidneys are working as he is able to produce urine as he should. We are not sure why the fluid level is low, but I am going to try and increase my oral fluid intake and see if that helps......which unfortunately is also going to mean not straying far from the facilities....if you know what I mean!!!!......not that I have been able to anyway.....but it is going to get much worse! I also have to figure out a way to get things moving in preparation for a possible induction. The doc says if this fluid situation gets worse then I will need to deliver sooner than later. I am not nearly ready for a natural birthing situation......which would be the best for Bennett......so that means I may require a c-section at some point relatively soon. Let's pray that doesn't happen. I will be returning to the hospital on Friday morning for a non-stress test (for Bennett, to see how he is handling things so far).....and further scans to see if fluid levels are staying put.....or possibly decreasing. I am supposed to be visiting with my other little guys this weekend also, so I am really hoping that can happen. My mom is coming to pick up Tanner & I and take us to a hotel for the weekend. The boys can swim......I can visit them for a couple days......and then Tanner will be returning with my mom. That is all my news for now. Thanks for all your love and support..... Melissa & Bennett

March 7th.....another update!

Wednesday, March 07, 2007

Current mood: drained Category: Life Hello everyone! We are doing just fine. Bennett is doing just what a darling baby should be.....growing, sleeping.......kicking!!!!!!!!! I saw a doc today......they are not scheduling me for a delivery date.......so that is a bit scary. I am going to deliver this little guy when he decides he is ready to come out and take a look around. I am settling in here as best as I can. This family here is really amazing. Tanner loves his new friends........but really misses his little brothers too. Being 4 is so rough.....he just doesn't really understand what is going on here. I am really trying hard to stay in touch with all of you, but computer time is a bit limited.......so bear with me. I love you all.....and miss you bunches...... You just don't realize how much you have come to rely on modern technology until you just don't have it at your fingertips so readily. Please keep Bennett in your thoughts and prayers......I honestly do believe it makes a difference! Take care, Melissa & Bennett xoxoxoxo

UPDATE!

Thursday, March 01, 2007

Current mood: accomplished Category: Goals, Plans, Hopes HELLO EVERYONE, Just wanted to let you know that we arrived safely in Toronto yesterday. I attended my appointments, all is well. Bennett is estimated to be about 6 & 1/2 lbs already, which is amazing since they always say that trisomy 13 babies are smaller than average. We still have 4 more weeks to go. Tanner is having a great time with his new friend Jack. We have settled in just fine. No date set yet, for delivery, but will keep you updated. Dinner is ready, so we must go and eat now! Yippee......baby boy is hungry! Thanks to you all for your continued luv, comfort and support. I need you all so much, I wish I had words to let you all know individually how much you mean to me. Take care, keep the dream alive! Much love, Melissa, Bennett, and family.......xoxoxo

Could it get any worse?

Sunday, February 11, 2007

Current mood: annoyed Category: Life I am so tired. Honestly, how much more am I supposed to take? So, Friday late afternoon a man comes to my door. I know this man.....a retired police officer from my church. A very nice man, who felt really bad about why he was there. He said it was official business......and I wasn't really sure what he meant as I knew he was no longer an officer. I guess he is now employed as one of those guys that gets to deliver bad news. My estranged, disgruntled husband is taking me to court for custody of my boys. He wants me to be in Sudbury court on March 6th........the same day I am to be in Toronto to begin my wait until Bennett is born. He knows this too. We have not spoken to each other since June 12.....the day he came to my home and laid a major beating on my eldest son Brendan! Of course charges have been laid, and a restraining order put in place. Well, he was not real good at staying away from our home, so I finally called the police and they placed more charges on him when I told them I had very good reason to be concerned for our safety. He was charged with breaching his bail conditions, harassment, threatening and assault with a weapon. He was also told to vacate the island that we live on and is not allowed to come back unless it is for court. Now, we were to appear in court for preliminary hearings on Feb. 5th. When the Crown Attorney heard what I am going through right now she did not feel comfortable with having me testify and be put through the added stress of it all. She contacted my husband's attorney and they agreed to put it off until a much later date. My husband has been enquiring about me around town to people he still has contact with. It is a small town and his mom still lives here too.......so they both know that I am about to have this baby. Now he also just found out about the complications as I am sure his lawyer explained that to him when they had to discuss putting off the court date. This conversation would have been very recent.....just about 3 weeks ago. So.......he is purposely bringing me into court to take away my children, my income, and my home.......in the same month I am to deliver a fatally ill baby. How nice is that? I don't expect him to feel sorry for me.......fat chance of that happening anyway. But, I have had sole custody since July 8, 2005. These last court papers set out visitation rights for him which he has chosen not to access since June 2006. Whose fault is it that he hasn't seen his boys? Certainly not mine. Am I supposed to track him down and hand over my children to a man that has proven himself to be untrustworthy and dangerous? No one can convince me that this is merely a coincidence. This is just another sick plot of his to make me regret leaving him. He warned me of this time and again before this all happened. The only thing I regret is marrying him in the first place......Not the fact that I left him! He needs an ego adjustment. As for this pregnancy......well.......the last 4 yrs were celibate ones for me anyway......God only knows what he was up to......and quite frankly I don't really care. He had his own living quarters in our home. He did not crawl into my bed everynight. The last 2 yrs we were legally separated out of necessity. He had cut me off from accessing our income. I had to take him to court to get support coming in so that I could pay some bills. I also needed him to get out.......or arrange an income for myself and the boys so we could move. It turned out that he was court ordered out of our home.....and the boys, the home, and an adequate income were given to me. YAY!!!!! AS IT SHOULD BE! I did nothing wrong in meeting another man and sharing some much needed comfort with him. This baby......and his subsequent health problems were a huge surprise. I knew that my ex was not going to be happy to hear about me expecting another man's baby, but I could not terminate a pregnancy just to pacify his feelings. A life is a life. I have to believe that God sent me this child for a reason. I am not sure why yet......but I have my theories. As for this court stuff......I can't quite wrap my head around why I am being given this particular hurdle at all.......especially right now. I continue to pray for strength, courage, and comfort during this time.......like never before. Perhaps God is testing my loyalty. I don't know....... But I am not about to turn away from Him now. I just keep my sanity by reminding myself........ Somewhere.......... many people have it much worse. I am still a very lucky Mommy!

More great Bennett news!

Saturday, February 10, 2007

Current mood: determined Category: Life Hi.....I just thought I would update you all with the other great news that I had forgotten to write about in my last blog. Since the beginning of December there has been a bit of concern over the size of Bennett's head. They told me that it was measuring a bit small for dates and that they call this 'microcephaly'. No one told me much about it so I just put it to the back of my mind as there is nothing that can be done about this anyway. I had the ultrasound repeated on Feb. 6th. Again they had to take head measurements. Bennett's head is now measuring as normal size for gestational age. It has caught up since his last visit 3 weeks earlier! At his last appointment on January 17th they said that he seemed to be a bit growth retarded by about 2.5 weeks. He was measuring to be normal size in December. That means that in the 7 weeks since his last u/s he had slowed down a bit on his growth. This can be common in trisomy 13 babies and again there is nothing that can be done about it.....so I just put that worry aside also. They did tell me that on January 17 he was measuring at 3 lbs. I figured that wasn't too bad based on stuff I had researched. Well.......3 weeks passed.........and HE NOW WEIGHS 5 lbs! What a miracle! I can't believe he is doing so well. This is the first time I have hoped for a big baby! I am hoping that his growth continues in leaps and bounds so that he may be a bit bigger and stronger to survive his surgery. Thank you all for your hopes and prayers. THEY ARE WORKING!!!!!! LOVE TO YOU ALL....FROM ME & BENNETT

Surgical News for Bennett!

Thursday, February 08, 2007

Current mood: accomplished Category: Goals, Plans, Hopes Hello All, First I want to say .......Thanks to all of you for your continued interest, and words of comfort. I couldn't get through this difficult time without you. I travelled to Toronto again this week to see a surgeon on February 6th. I had the honor of meeting with the Chief of Surgery, a very nice man. He has agreed to perform Bennett's required Left CONGENITAL DIAPHRAGMATIC HERNIA surgery personally. I am very relieved to hear this for a couple of reasons. 1. I was told it may be impossible to find a surgeon willing to perform this particular surgery on a Trisomy 13 baby. 2. This surgeon is highly skilled. He has been involved in the separation surgery on three different sets of conjoined twins. Here is more info if anyone else is interested. http://www.torahinmotion.org/spkrs_crnr/faculty/bioJacobLanger.htm I was joined at this appointment by my dear friend Barb, also a mom of an angel born with trisomy 13. Barb has attended each appointment I've had in Toronto to date, and is a great source of support and comfort for me. We met through the www.livingwithtrisomy13.org website, and as she lives in Toronto I was able to meet with her personally. Infact, from March 6 onward, my 4 yr old Tanner and I will be staying at the home of Barb's family awaiting the arrival of Bennett. What a generous gesture of good will. Also in attendance at this surgical meeting was the Chief of Critical Care, the Director of Patient Representatives, the Senior Staff of Bioethics, and a Social Worker. It seems that many people are taking an interest in my precious Bennett's care. This is amazing. They each gave up an hour of their very costly time to sit down and chat with us in the very comfortable office of Chief Surgeon Dr. Langer. What an honor. I can't even tell you how pleased I am so far. All of these fine people gave me the time to show them some pics and share stories of other children living with T-13. I shared with them my intense love for my Bennett, and explained to them that these living children go on to HAVE A QUALITY OF LIFE.......AS WELL AS GIVE A QUALITY OF LIFE! I explained that the information that many in the medical profession have concerning these trisomy 13 survivors is very outdated and lacking in proper insight into the precious lives of these children. Who knows what these children can accomplish if given the opportunity of survival. When Dr. Langer told me he will personally do the required surgery I broke down in tears. I could hardly breathe. I was so relieved to hear those words spoken. Thinking back on that brings tears to my eyes now. I know there is no guarantee of survival......but to just know he is going to be given a chance is such a huge relief to me. Knowing that he is going to be in the hands of one of the best surgeons around is also a HUGE RELIEF! I have attended this hospital 3 years ago for my Tristan's surgery. His surgeon was also a very nice man, but I did not get led into a cushy, private office, surrounded by so many other wonderful people either. God must surely be pulling some strings for us. Thanks again for being such loving and considerate friends. I am so grateful for each and every one of you. Much love, big hugs and kisses too....... From Melissa & Bennett......and family!

Another Bennett update

Sunday, January 21, 2007

Current mood: discontent Category: Goals, Plans, Hopes Another week passed.....I cannot believe it. If there ever was a time I wanted to stop time....it is now. On January 12 I was in Toronto for a fetal MRI. The results confirmed that my tiny Bennett does indeed have a 'LEFT' CONGENITAL DIAPHRAGMATIC HERNIA.....CDH for short. These particular hernias are most common on the left side...but can occur on the right as well. This birth defect always requires a surgical repair as soon after birth as possible. Stabilization is a huge issue here. In most cases these hernias are so severe that it prevents the lungs from developing properly preventing adequate breathing at birth. These severe hernias can often involve herniation of the entire stomach, liver, and intestines. Bennett is so lucky! His CDH is not severe at all. His lung development is very good. His left diaphragm is there....but there is a hole in it that is allowing only the top of his stomach and spleen to push against it.....therefore his lungs are not compromised at this point. He should be able to breath at birth on his own. He may need to be put on a ventilator though....to prevent air from getting into his stomach and intestines which can then expand these organs and cause further pressure on the lungs. He will receive nourishment through an intravenous, either through the umbilical cord or through one of his tiny arms as he will be unable to eat until the surgery is performed. Immediately following birth he will be whisked away to the neonatal intensive care unit....aka NICU.....at the delivery hospital. He will then be taken across the street through underground tunnel to the children's hospital for the rest of his surgical care. This could involve a stay of several weeks, depending on how he does with all of this. I returned to Toronto again last week for appointments all day on the 17th. The fetal echo was repeated by a cardiologist at the children's hospital. He is a very nice young man. He was very thorough in his investigation...and explanation of what he saw....and what he didn't see. What he saw......a normal 4 chamber heart...YAY!....far cry from the solitary, enlarged chamber I was told he had earlier on. What he didn't see.....a clear viewing of the aortic arch. Bennett was still lying a difficult position for proper viewing....so he is unable to report that he didn't see any problems....but that also means he cannot report that everything is fine either. He told me that most of these complications....IF HE HAS ONE......do not require surgical repair. Apparently there are medications that can help. If he does need surgery....he assures me that this condition is seen so often....it is not a major surgery to fix this and he would not hesitate at all in ordering that it be performed on my trisomy 13 baby. He also shocked us by telling us how he understands that there can be such a broad range of how mildly or severely affected that these babies can be.....which was great to hear. Many doctors will only admit to knowing how very, very severe it can be.....and will not admit that there are survivors that thrive at all. It seems that this young cardiologist has been doing his homework!.....Kudos to him I also spoke with a social worker that will help me when Bennett becomes a patient there. She is a very nice woman that obviously loves her job. I also spoke with a woman who is the Director of Patient Rep. Services at the children's hospital. I explained to her my fears....and also what I want regarding my treatment of my little fellow. She has already followed up by sending a memo to the Vice President of Patient Care....as well as to the social worker and another woman in some other department that I am unfamiliar with at this point. Apparently they will be assisting me in getting the care I want for Bennett regardless of the fact he is a trisomy 13 baby. He should not be denied treatment of any kind.....it is not his fault he requires this surgery.....and no one has to raise him afterwards....just me. I have already accepted that he will have "DIFFABILITIES".....meaning....different abilities than you or I do.....he is not disabled in my eyes. He is perfect to me. The perinatologist....who is a doctor that specializes in deliveries of high risk pregnancies.....is setting me up to see a surgeon on my next visit....in about 3 weeks time. He wants me to see the Chief of Surgery....but cannot tell me that this man will agree to the surgery that he so desperately needs in order to survive. This frightens me......which is why I have already spoken with the patient care people. I had another ultrasound done....this time in a room that was equipped with a monitor mounted infront of me for viewing exactly what the nurse was seeing as she performed the examination. This time around she was very patient with me as i asked to see various parts of him....including his face.....and she printed me off a couple of pics to bring home....free of charge....as they are supposed to charge $5.00 a piece for them. His face looks perfect. It is not the best pic....since he was turned enough away that there was a shadow cast on his left eye...but he does not have a cleft lip as most of these trisomy babies do. He was also head down.....I just hope he stays that way. He had obviously shifted that way following the earlier fetal echo.....the little monkey! The MRI also confirmed that he does indeed have the Dandy Walker malformation that they suspected from the earlier u/s. What this means in terms of prognosis is unknown at this time. His is appearing as not severe....which I guess is a good thing. Some babies with this also have hydrocephalus....fluid on the brain....that requires drainage.....HE DOES NOT HAVE THIS....... From what I have researched about this condition some people with mild affliction can live their entire lives without this affecting them negatively at all. They can have normal intelligence. I already know that because of his trisomy 13 he is expected to have developmental delays anyway....so if this means anything for him at this point is unknown.....as in every case. So now...I know I am to deliver in Toronto. Date unknown. It will be a scheduled induction. The other boys were not early...infact they were quite comfortable in there and did not hurry to get out at all.....so the likelihood of my going into early labor is not a grave concern at this point.... Normally in these situations women will be induced at about 38 weeks.....2 weeks early.....40 weeks is considered full term....but anywhere between 38 weeks and 42 weeks is ok. Prior to 38 weeks is considered pre-mature....and post 42 weeks in not allowed in a majority of births. Two of my guys were born on the 14th day overdue...the last one was that late and had to be induced to come out on that day. The doc hopes to get me to 39 weeks for optimal lung development....I am due March 28th.....so he may be born the week before. The rest is in God's hands.

I'm exhausted....

Friday, January 19, 2007

Category: Life Hello everyone, I want to let you know that I am well.....but feeling a bit emotionally drained and unable to bring myself to sit here and type out any details just yet. I will let you know though that there is no change for the better or the worse in this little guys's condition. The big question here is still whether he will be treated as I hope he will. .....things are not as good as I had hoped......but aren't as bad as they could be. Details will follow shortly....... I just wanna say thanks so much for all the love and support that you generous people give so freely.......it means so much to me.....& Bennett......xoxoxo

Bennett update :O)

Thursday, December 21, 2006

Current mood: calm Category: Life Hello all.... I received a phone call yesterday from Mt. Sinai hospital in Toronto. The specialist that I saw a couple of weeks ago wants to book another test on Bennett.....a fetal MRI..... I have to return to Toronto on January 12 to have this done.....bright and early.....so I am hoping this is a good sign....that someone at leasts thinks my precious boy is worth taking a better look at....in hopes of being able to save him when he is born. I am trying to remain as positive as I can. I am looking forward to spending the holidays with my boys....I enjoy their company very much....they are so well behaved and a pleasure to be around. They never cease to put a smile on my face....my 6 yr old Mason has post it notes all over my desk area with "I LOVE YOU MOM!"...written all over them. He also made me a picture with chains of brightly coloured hearts on it...it is beautiful. I will definitely put these in a scrap book for safe keeping. Thank you so much to all of you that continue to pray and send best wishes for my Bennett....I believe they are working....keep on rubbing the lucky rabbit's foot! WE LOVE YOU ALL VERY MUCH!

Everybody please check this out....

Sunday, December 10, 2006

Current mood: content Category: Life How cool is this?....... My eldest son Brendan has decided to write some songs and post them on a site for his unborn baby brother Bennett... he has been trying to set up a myspace music site....but for some reason there has a been a problem...so he set one up on purevolume.... he is in the process of writing the songs as we speak....so hopefully soon he can get them recorded and posted.... but isn't this the greatest thing........what a special brother.... www.purevolume.com/introducingbennett

Bennett update....

Friday, December 08, 2006

Current mood: aggravated Category: Life I cheated and copy and pasted this from something i just posted on the support group site that i joined a few weeks ago......after writing this a couple of times today i just couldn't find the energy to do it again..... hello all....it has been a very interesting week. I attended some appointments in Toronto a couple of days ago.....for a fetal echo and a phase II ultrasound. The initial u/s results showed: ~a solitary enlarged heart chamber....which was explained to me by the geneticist to be indicative of HYPOPLASTIC LEFT HEART SYNDROME....told me this is inoperable....and a fatal condition...well.... THE FETAL ECHO SHOWED A 4 CHAMBER HEART!.....not HLHS.....the cardiologist was not able to get a good view of the aorta though...although the test involved being moved throughout 2 rooms....and they spent nearly 2 hrs looking at his heart function etc...so i feel they were very thorough...the cardiologist himself spent a bit of time looking at the end of the test.....and wants to have it repeated in 7 weeks time....at 31 weeks...Bennett was just laying in a poor position....the cardiologist said that he feels this is just technical difficulties....but a closer look will be given. so great! Then we were off to the next ultrasound. We had 3 different women looking at the testing as it occurred. One was a nurse...who performed the scan....one was a resident who was learning....and the other woman was a doctor...thank god she was there.....for she was wanting to take closer looks at things at this test went along....when the nurse was just wanting to skip from one thing to another....making assumptions that the dr had her go back and take a second look at.....and ruled out some things. The first u/s showed MILD HYDROPS....fluid buildup in the abdomen....thought to be caused by heart failure due to the seriously malformed heart..... THAT HE DOES NOT HAVE! They were unable to see any trace of hydrops....which is excellent. The prognosis for any baby with this condition...especially caused by a chromosomal abnormality is very lethal. They often do not make it full term...and are stillborn. The first scan also showed that he had closely spaced "orbits"..(eyes).....wrong again..... they assumed that this indicated that he had HOLOPROSENCEPHALY....which means that he would not be able to regulate his breathing at birth...and would also pass away from this. WRONG AGAIN!...they did not see it....they said his brain had divided as it should... NOW.....what did they see.....or think they may have seen....although admittedly they are not certain....so the other male DR. that i saw wants to have the test repeated again at the same date as the fetal echo will be repeated. They think they saw a smaller head....which they believe to be indicative of a Dandy Walker Malformation....not a fatal condition though...they did not see the back of his brain well....let's hope that they get a better look later and can rule this out also. The major thing they reported was that they were unable to see his left diaphragm....so they assume that it does not exist. This leads them to believe that he MAY have a LEFT DIAPHRAGMATIC HERNIA....which needs to be operated on immediately following birth. This hernia causes the stomach to be pushed up into the area designated for the heart and lungs....again though....Bennett was laying on his side...they had me rolling around trying to get good shots....but could not get them....so this is loosely based on what they were not able to see.....NOT WHAT THEY ACTUALLY SAW! The clincher here being this.... The male specialist i saw told us that this condition is operable....but because my son has been confirmed to be trisomy 13 through amnio....it will likely be impossible to find a surgeon that will perform the surgery he requires to keep him alive. We asked about the prognosis of the surgery in babies that have it performed...apparently they come out of it fairly well....this all depends on the condition of the baby's lungs at birth though...if they failed to develop much due to lack of space in the chest cavity then that can affect the surgery being sucessfully attempted...but he did say again that trisomy 13 babies will likely be refused this surgery. The other question i wondered about later was this....if the cardiologist spent nearly 2 hrs looking at my son's heart and lungs...why did he not see that his stomach was laying up in there? SO WHERE DOES THIS LEAVE ME?..of course i wanted to know.... They can arrange for me to give birth somewhere that he can receive palliative care until he passes away...but they have meds they can provide...and he won't suffer...... i asked him if i should cancel the future fetal echo appointment....he said no....he will see me again the same day to repeat the scan....hoping to get better shots this time....and he will book an appointment with a pediatrician to see me...or talk over the phone if i can't see him in person....hopefully i can persuade someone to treat this little guy's symptoms....not his syndrome. not worthy of treatment....even though everything else looks well....he will not suffer though.....well...i am not comfortable with that idea.....i did break down and shed some tears...no one even bothered to show an ounce of compassion...the male dr had left by that time....the women were just there to hand me a tissue box....and go about their business... The really great thing about it all was this... I WAS NOT ALONE....I was joined by another trisomy 13 mom from our group...Barb...mom to angel Annie...she was such a source of comfort and support....and we had a great day together despite meeting under dim circumstances. We are going to work together to see if we can get some answers concerning the lack of care for "our trisomy boy". I am not giving up like this....look how wrong they were the first time around. Big hugs all around...from Melissa & Bennett...xoxo

Off to the city tomorrow....to have more tests done on my precious Bennett

Monday, December 04, 2006

Current mood: exhausted Category: Goals, Plans, Hopes I will be away for a few days....travelling to Toronto to have more tests done on Wednesday. 8 am Fetal Echo Cardiogram.....at Sick Kids Hospital....i have been told that they think that Bennett's heart is not growing properly and that they think he has Hypoplastic Left Heart Syndrome.....which basically means that one side of his heart is not appearing in their initial u/s....and have told me that there is nothing that can be done for him if he is born with it....of course i wanted further testing done....so we will see a better pic and have a better idea what may be going on in there...although i have been told that these tests also are not 100 percent accurate. 2 pm....Mt. Sinai Hospital....for a phase II ultrasound to view the rest of his tiny body.....and hope to see that everything looks good. I have been told that his "orbits" appear closer together than normal and that this may be indicative of holoprosencephaly.....a failure of the brain to grow and divide properly....but the initial u/s made no mention of seeing anything wrong with his brain.....and his head measurements appeared to be accurate for his dates.....so again....let's just hope this is not the case....because i have been told that he will not be able to control his breathing after birth and will eventually cease to breath at all.....and yes....that terrifies me to no end. They also saw extra fluid in his abdomen on the initial scan....which they figure could be caused by heart failure. This condition also is untreatable and a majority of babies that receive this diagnosis do not live to be born full term...which means that my days with this little one may truly be numbered. Each day i have with him is such a blessing...i cannot even tell you how much i enjoy feeling him inside of me....he is wiggling around right now.... I spoke with a friend the other day that i haven't spoken with in a very long time. She did not know about Bennett's diagnosis....so when she asked how everything is going i told her....which is a scary thing to do as you don't know what people may say. Well....she asked me if i could be induced now. I asked her why i would want to do that....it is too early....i am not due until the end of March. Her response, "well don't you just want to get it over with?"....so my response was something like this...."what.....we are not talking about taking out the trash...we are talking about my baby....he is a boy...his name is Bennett....and i love him very much. He is not emotional baggage to me....and each day we have together is a blessing as i do not know what the future holds for us....or how much longer our future together even is." well.....she tried to explain herself....but if some people would just stop and think before they speak.....honestly....it would just make this world a better place. so i ask you folks out there that may think the same way she does.....if you have a child....and that child is diagnosed with a disease that MAY OR MAY NOT be fatal....would you snuff it out to get it over with.....not likely right......and the reason being....you love your child and could never even dream of ending its life....and.........is there a guarantee that this child REALLY IS GOING TO DIE.... well we all know that sometimes medicine makes mistakes.....or that sometimes people heal for inexplicable reasons.....why jump the gun literally if there is a chance to have a future together..... we all also know people that are diagnosed each day with serious illnesses with no known cures....but doctors and family members work together to prolong the lives of these people so that they can enjoy each other for as long as possible... so let me tell you...... it is the same for a baby with a poor prenatal diagnosis..... do i know if my baby will live?.............no do i know if my baby will die?...............no am i willing to take his life in my hands....and decide his fate.............NO !!! Everyone please try and understand the love us moms and dads have for these babies.....and if you ever should find yourself in this situation.....you will understand....until then please do not judge...and do not say anything at all if you can't approach this with compassion and words of comfort..... DON'T ASK WHY.....we choose to go on with these pregnancies.......stop and think about it...... i will update again when i return on Thursday night.....and hopefully will have something good to report.... but just know.....i have him with me tonight.... and that in itself is a good report! MUCH LOVE TO YOU ALL....MELISSA & BENNETT

Just another weekly update....

Saturday, November 25, 2006

Current mood: drained Category: Life It has been another difficult week.... Monday....went to the funeral home to get a start on planning my precious Bennett's service....it went as well as could be expected....the funeral director is a woman that lost a baby herself nearing the eighth month of her pregnancy several years ago. She remembers the pain she experienced during that difficult time in her life and has offered to supply the casket and her services when the time comes. It seems such a sad and terrible thing to have to do ahead of time...but i feel the need to get it over with now so that i can just focus on taking care of myself and my other boys....and not have to make these delicate decisions in the midst of my grief...plus i will be recovering from childbirth myself so will not be in the best of physical condition when this is supposed to happen. I still pray that this will not happen....it is merely just part of the process of being prepared for anything. On the upside of Monday....my brother came by and finished up some seriously needed renovations on my home. He built me a new front step on Saturday....8x8.....the boys love it....big enough for them to dance on.....then on monday he replaced 3 doors for me.....2 at the new entrance...one on the back....so that helped make my day! No more drafts.....yay! Tuesday......i saw my midwife in the morning....Bennett's heart is still beating strong....music to my ears.... .............in the evening i went to a church meeting to discuss plans with some of the other moms in preparation for the time when i am unable to teach my Sunday school class anymore.....i love to be with the kids....they range in age from 4-8....i mostly teach them about being decent kids...having respect for each other...their family...and community members.....and teach them to appreciate the things they have in life....warm beds, toys, clothes, etc.....all the things that some people do not have...they are just like little sponges...they take it all in....and we have some pretty indepth discussions for such a group of youngsters...they are great! Wednesday.....was a big day for me.....saw my genetic counsellor again.....and had a teleconference with my geneticist....(doctor that specializes in genetics)....she is in Ottawa.....we discussed the findings of Bennett's last ultrasound....she told me some things that i already knew.....and a couple of things that i didn't.....none of them good news though... I asked her if anyone is sure of what they saw in the reports......she said no....i told her that i want to know as much as i can find out.....so that i can prepare myself for what is coming my way.....i am being referred to a hospital in Toronto to have another specialized ultrasound done on Bennett's brain and heart....as they highly suspect that these need to be looked at a little closer......also they need to check out the possibility of "mild Hydrops"....the fluid build-up in his abdomen.....in most babies with this they do not make it full term....and is almost always fatal after birth.....so this is scary to hear....and needs to be confirmed or hopefully.....denied. I will also be seeing a neo-natologist at Sick Kids Hospital in Toronto to discuss the findings of these latest tests....and discuss treatment options if there are any that will make a difference....again...let's hope there is a chance he will survive with some help.... Let's pray for some healing here for this tiny innocent baby boy of mine.... Thursday.....began crocheting a tiny burial gown for the little guy....in the event that he does not make it full term.....he will need something to wear....it is difficult to buy clothes for such tiny little ones.....especially at the last minute....i am living on an island ....not much access to specialty shops here.....the gown can be made bigger if he outgrows it....and let's hope he does.....i want him to be snuggy and warm in something made by me....with much love.....i will also make him a blanket, hat, booties, and mitts...i will be busy..... Friday and Saturday (today).....i was pleasantly surprised with a couple of truckloads of firewood.....which was greatly needed....as it is the only means i have of heating my house....the wood was donated by a couple of families from my church congregation..... Last Sunday my reverend and my midwife decided to speak out about my journey so far in this pregnancy....the testing....the results....the diagnosis....and the very sad prognosis.....we decided that eventually people need to know about this so that they can support and comfort me along this path i am on right now.....the church is my safe place.....outside of my home....it is a small community i live in....and i know that one day someone will ask me about my pregnancy....etc....especially since christmas is coming up....and we will be discussing the birth of baby jesus....i don't know how i will handle having someone ask me about my baby.... i may cry.....i may not.....i wonder if i should pretend everything is fine....or should i blurt it out right then and there.....and risk hurting someone else's feelings....or should someone else warn them.....to prevent hurt feeling's on either side.....well.....now they know......and many people have stepped up to comfort me....it was emotional....but much needed......i now know i can attend my church and not feel so vulnerable and fearful of being asked something i cannot handle having to explain to people..... My youngest son turned 4 today.....November 25th.....we had a family gathering here for him tonight.....he got many dinosaurs of many shapes and sizes....and he was thrilled! All in all......it has been a very busy week......and i am exhausted.... Thanks very much to all of you that continue to show your support.....i need it so much.....and gather much needed strength from your kind words that comfort me to no end..... I/WE love you all so much....words alone cannot express how much..... Sincerely, Melissa & Bennett...xoxoxo

Introducing Bennett....

Saturday, November 18, 2006

Current mood: complacent Category: Goals, Plans, Hopes It's official....I have finally chosen a name for my tiny precious unborn son...... "KING BENNETT....MY BLESSED LITTLE WARRIOR" His name actually translates to ~Bennett Chadlen Roy~ Bennet meaning "Little Blessed One"..... Chadlen meaning "Warrior"....(and also his dad's name)..... Roy meaning "King"....my last name and A noble name for a noble little boy..... I have thought long and hard about this name....for i wanted a name that would have so much meaning for this little guy of mine.....i wasn't sure about naming him after his dad...but then i thought....Why Not?....his name means "Warrior"....and my son is a tiny warrior...fighting his way through this journey we have been given.... He has not given up yet....when so many of these trisomy 13 babies don't even make it this far..... and Bennett.....well that is not an everyday name....it is unique.....just like him.....and he is truly my "Blessed Little One"...what better name than that...... There you have it....my precious son goes nameless no more...... BENNETT & I are taking each day as they come....there have been many ups and downs.....good times and sad times....but we are in this together he & I.... I will not give up hope of bringing him home one day....I believe in Miracles.....for he is already a tiny miracle.....to me..... I wasn't prepared to ever have another child....I honestly didn't think it was possible at this time....I was preparing for surgery....(partial hysterectomy)...that would have prevented this from happening ever again....and the problems that were bringing me to that decision were what i believed to make it impossible for this to occur....as well as the fact that I was on birth control also...to help with the problems that were bringing me to the point of needing this surgery..... so he is my little miracle baby.....my *Blessed Little One*... MY BENNETT....... I LOVE HIM SO MUCH...

Finally...test results...

Friday, November 10, 2006

Current mood: crushed Category: Life First off.....this baby has been confirmed to be another boy.......so i guess i will not name him Daisy.... the amnio also confirmed the diagnosis of "FULL trisomy 13".....i was hoping to find out that it was partial....but no such luck..... now for the ultrasound results: the good news.....there was not any brain abnormality detected.....the baby's growth is right on track.....exactly where it should be....and all in proportion....the head, abdomen, and legs were all measured....and the results are accurate with my dates... there weren't any problems noted with abdominal organs....the kidneys, liver, digestive system, etc...all seem fine....but will be checked out again later as the baby gets bigger..... so that is awesome.... now for the not so good news....there appears to be a facial abnormality...concerning close set eyes.....cleft palate or lip was not detected....but cannot be ruled out yet....skeletal wise though the skull and body is good..... the back of the baby's neck seems to be a bit thicker than normal....but does not cause any medical concerns... the abdomen appears to have "mild hydrops"--which means that there is a bit of excess fluid built up in the abdomen.....from where....don't know....and i don't know if this can be treated....or what that means prognosis wise....so a bit of concern there...... now for the worst news.... the baby's heart seems to be quite malformed....i won't go into detail.....it is too hard to discuss just yet....but if this cannot be ruled out with further testing....then I know that this time i have now with my tiny son is all there is.... so i am really, really sad about that.....let's hope and pray that these results are not accurate.... i want a fetal echocardiogram performed....(more precise ultrasound on the fetal heart....performed by a specialist in this area).....but i will have to wait and find out if that will be recommended by the geneticist that i am supposed to speak with in the near future....she is in Ottawa....and wants to set up a teleconference with the little guy's dad and I..... I am going out of my mind right now...... actually i should correct that and say....we are going out of our minds right now....for circumstances too many to get into....dad and I are not able to be together right now.....but he does care....and loves this little guy as much as i do.....it has been a difficult past few months for us...but we are going to try and figure some things out.....i know that i have been pretty much "closed lip" about him....and only writing based on my point of view...but please do not assume that this baby has no dad....he certainly does.....please wish us luck....this is so difficult....for both of us..... so there you have it.....i wish i could have told you all some really wonderful news...but the best news i have right now is that i have this beautiful little boy inside of me....living....because of me....and that is a wonderful feeling....i can feel his little feet dancing as i sit here right now.....i love him so much...... i will also be updating my other site..... www.livingwithtrisomy13.org... prenatal diagnosis family...."Baby Roy"....now that i know the sex....and this latest news....there are already ultrasound pics there....and a little blurb about my journey so far....i have met so many moms...and they continue to support me daily....it is wonderful...... thank you all for being patient with me....and for all your comfort and support.....it really does help me....to hear from you all....your words encourage me to get through another day.....another week..... please understand if i don't reply promptly....i really am trying.....but this latest news is really leaching the happy out of me.... so now the wait continues.....

i posted my story online......check it out....if you want.....

Saturday, November 04, 2006

Current mood: content Category: Goals, Plans, Hopes i went to the website again....that i posted last week.... http://livingwithtrisomy13.org/ if you go to the page...and look under prenatal diagnosis families.... there we are...under "Baby Roy"....at least for now... i will find out soon the sex of the baby...then dad and i will pick out a name... so until then...it is Baby Roy... i will update the information on the site as i go along...and receive more info...as well as keep you posted here too... but if anyone wants to check it out....feel free to do so.... it feels a little strange to see my story there....kinda like an out of body experience .....not sure though.....never had one.... After posting that story...i also posted a prayer request at another site...i believe it is also run by the same lovely woman...though not sure...so i am hopefully racking up more and more prayers as days go by....i totally believe in the power of prayer...so please don't be shy...prayers are awesome...and know that i also pray for all of you...everyone, everywhere....we all need them... i received an invite to a wonderful group...i accepted and am now a member of a trisomy 13 support group...the people i have met so far are amazing to say the least....these are the parents of some of the babes you have seen on the above site...the most loving, caring, supportive, comforting people around...i could go on...they are amazing....i have been reading all their stories for the last few days...and to hear from these families personally...well i can't tell you how it makes me feel...but it is great...they are so strong...even amongst their grief and daily struggles....some still have their wonderful PERFECT CHILDREN....others do not...but the love felt from these women...for their children....is incomparable to anything else....they are all truly godsends... THANKS AGAIN & AGAIN FOR ALL YOUR LOVE AND SUPPORT...IT IS MORE COMFORTING TO ME THAN YOU COULD POSSIBLY KNOW... I LOVE YOU ALL SO MUCH....BIG, BIG BEAR HUGS TO YOU ALL....XOXOXOXOXOXOXOXOXOXOXO

i want to share with you what i just found......

*It's important to note, before you read this.....this was written by the woman who ended up taking me in during my wait for Bennett-Chadlen. I saw this essay, never thinking in a million years that I would ever make contact with this women, let alone become dear friends with her. We are like family now, after all that we have endured together. Barb attended each prenatal appointment with me, allowed me to move into her home for 5 weeks to wait for Bennett-Chadlen's birth. She held my hand during his birth. She held my hand during his passing......"knowing" my pain......*

Friday, November 03, 2006

Current mood: exhausted Category: Goals, Plans, Hopes here is part of an essay written by the mother of a trisomy 13 baby....... i found it very touching....i hope that you do too..... "My husband and I were recently faced with a very difficult situation. We are in our 40's, educated and financially stable. We have 5 children at home and we love sports and travel. The kids do well at school, are athletic, and all are healthy as horses. Life was good to us. We were pleasantly surprised when we discovered that we were expecting a new life to love and nurture. We first heard of our unborn daughter's genetic condition long before she was diagnosed. It was considered a lethal condition, an extra 13th chromosome. Most babies don't make it to birth and those that do live a few years and are severely disabled. I thought, "Well, what is the point of that life?" When the geneticist uttered the dreaded words, "your daughter has trisomy 13" and it was a diagnosis about my baby and not someone else's, the reality was entirely different. With the ferocity of a lioness, I wanted to love and protect this little girl, and do all that I could for her. If her existence was only to be a few more months of kicks and flutters in utero, then I wanted her to have that life for the sake of both of us. We named her Annie. After the diagnosis, the research began. It was frantic, and went long into the night for months. We researched medical details and personal stories. We communicated with parents all over the world who had a child with this very rare condition. We discovered that the babies can live longer, but they may need a lot of medical treatment. The most amazing discovery was that the parents continually stated that they treasured and delighted in every day of their child's life. They knew with certainty, that the gift of that life was not theirs to keep. The children, called "survivors" were blissfully happy and progressed developmentally, albeit slowly. It became increasing clear to us, that unless the medical intervention to provide life was excessive, Annie was better off alive than dead. We were not sure how we could do it. I was the kind of mom who usually forgot to pack a diaper bag. I would often be impatient when one of my children couldn't master the math skills in their homework. Could I ever develop the patience for a child who may not be able to sit on her own for a year? How could we fit Annie's care and needs into our busy schedule? We had 5 soccer teams in the summer! We were more frightened than we had ever had been in our lives. Love for Annie compelled us forward. Annie was born full term, crying. She was mildly afflicted, as the syndrome goes. She needed a very small amount of oxygen and had hypoglycemia. Annie could not take all of her nutrition orally and so she had an NG tube (nasal gastric tube), which was a tube that went in through her nose down into her stomach. I became skilled at its reinsertion, every 3 days. We fed her expressed breast milk. Somehow, we dealt with all of the issues. We knew that with time, Annie would take more feedings orally and her need for oxygen would lessen, and likely be eliminated completely. We were aware that the first year would be rough. Everyone pitched in. Our 12 year old son took over the lawn maintenance and his older sisters took on Annie's developmental progress and bought "mind stimulating" music and ordered her a "Bumbo seat" to help develop strength. The whole family came together in ways that I never dreamed possible. We discovered how true our friends and family were by their support and encouragement. Somehow, the homework got done and the gang made it to their soccer games. At age 75 days, Annie smiled at us for the first time. Even now, a year later, the memory of that first and only smile causes me to cry. Annie experienced respiratory distress at age 80 days and was transferred by ambulance to the Children's hospital. The physicians told us she had pneumonia. Our beloved baby died less than 24 hours later. There are two ironies to this story. The first is that we thought we had a choice of life for Annie but the reality is that we did not. The medical records, which we instinctively felt compelled to obtain and have had reviewed, reveal no signs of pneumonia. An effective "Do not resuscitate" was ordered without our knowledge or consent. The final computerized medication report from the intensive care of an excellent hospital is inexplicably missing. The hospital issued a letter of apology stating that sometimes "communication does not occur in as clear and consistent a fashion as we would wish. For that, we are very sorry." Recent developments in medical science can be used to diagnose and terminate certain lives but the choice to use medicine to prolong these lives doesn't seem to be an option. During her 80 days, our little Annie taught us our greatest lessons in life. Through her life, we experience the deepest sorrow and the most intense love. She taught us the true meaning and purpose of life and we are forever changed as a family. Our children have learned that if they are ever in need, their family will love them, protect them and do anything to support them just like we did for Annie. They developed an incredible empathy for the disabled and the vulnerable. The ultimate irony is that this little girl who seemed so broken, flawed and seemingly without purpose or value, was in fact, perfect after all." My sentiments exactly......