Difficult days

These last few days since loosing the pregnancy have been very difficult. I is frustrating because I still have pregnancy symptoms but in my heart I know the baby is gone. Yesterday was especially hard because that was one when my original scan was booked. At least I have my son whom is a miracle from god to make me smile. And I know god has a plan for me and my family and a baby so soon after what I went through to have my precious son was maybe not part of the plan. At least I take comfort in knowing our little bean is with god. But it still hurts and I want to ask why, why me. Why did my doctor's let me go without treatment to the point I lost my precious baby. Why was it a funding decision, how did they have the right to leave me to miscarry while they where making up their minds? To those questions I will never have answers, I just know I miss being pregnant, miss the life that was growing and because of funding issues I don't know if I will ever be given the opportunity to give life to another baby again even if I get pregnant. These are issues me and my husband intend to raise with my specialist in the near future. Need to get some rest, God bless for now.

BAD NEWS

I AM SAD TO SAY, DUE TO LACK OF PRE-TREATMENT WITH FIBRINOGEN FROM THE NHS I STARTED BLEEDING AGAIN THURSDAY AND LOST THE BABY ON FRIDAY. ALL I CAN SAY IS I AM DEVASTATED!!

WE ARE PREGNANT AGAIN

I KNOW IT'S BEEN A LONG TIME SINCE I HAVE POSTED, BUT LIFE IS VERY HECTIC WITH A NEW BABY. WITH THAT BEING SAID I FOUND OUT ON THE 29TH OF SEPTEMBER THAT I AM EXPECTING AGAIN. THIS HAS COME AS A COMPLETE SURPRISE AS I WAS ON BIRTH CONTROL. I AM VERY HAPPY WITH THE NEWS BUT SCARED AT THE SAME TIME. SINCE I LIVE IN THE UK AND USE THE NHS (NATIONAL HEALTH SYTEM) THEY ARE REFUSING TO TREAT ME UNTIL THEY GET APPROVAL FOR FUNDING A 2ND PREGNANCY. IT IS DOCUMENTED THAT LADIES WITH MY BLOOD CONDITION (AFIBRINOGENEMIA) WILL MISCARRY WITHOUT FIBRINOGEN REPLACEMENT. ON FRIDAY THE 9TH OF OCTOBER I STARTED BLEEDING AND IMMEDIATELY THOUGHT THE WORST. MY WONDERFUL OTHER HALF RUSHED ME TO THE HOSPITAL IN ABOUT 5 MINUTES AND I WAS GIVEN TREATMENT (BECAUSE IT WAS AN EMERGENCY) CAUSE I WAS LOOSING ALOT OF BLOOD. THAT NIGHT THEY DID A SCAN AND INTERNAL EXAM TO DETERMINE THERE WAS A GESTATIONAL SAC AND MY CERVIX WAS STILL CLOSED. THE SCAN WAS REPEATED SATURDAY MORNING AND THANKFULLY NOTHING HAD CHANGED. I WAS IN HOSPITAL FOR 4 DAYS AND WAS TOLD I LOST 1 PINT OF BLOOD AND WAS DISCHARGED WITH IRON TABLETS AND AN APPOINTMENT FOR A REPEAT SCAN ON MONDAY THE 19TH. I DID GO TO SEE MY OB TODAY AND WAS ADVISED OF THE RISKS OF ANOTHER PREGNANCY BUT THEY ARE BASICALLY THE SAME AS MY FIRST. ALTHOUGH SHE DID SAY THERE MAY COME A POINT IN THIS PREGNANCY THAT SHE WILL ADVISE TO TERMINATE BECAUSE OF RISKS TO ME AND THE BABY BUT NOT AT THIS POINT. THE MAIN ISSUE IS THE FUNDING, SOMEWHERE SOMEONE IS SITTING IN AN OFFICE DECIDING THE FATE OF MY FAMILY. WHETHER OR NOT I GET TO CONTINUE WITH THIS PREGNANCY. I AM HOPING AND PRAYING THAT AT THE NEXT SCAN THE SAC WILL HAVE GROWN OR WE WILL SEE A HEARTBEAT AND DON'T MISCARRY BEFORE THEN. I THINK IF WE CAN GET TO THAT POINT THEN THE FUNDING COMMITTEE WILL BE PUSHED TO MAKE A DECISION WHERE AS OF NOW THEY ARE DRAGGING THEIR FEET. IT IS VERY FRUSTRATING BUT I AM TRYING TO STAY CALM FOR MINE, THE BABY'S AND MY FAMILY'S SAKE. PLEASE SAY A LITTLE PRAYER FOR US.

BRAYDEN MICHAEL KEITH

Baby Brayden

Sorry for the delay, but baby Brayden is here and we are both well. He was born March 23rd at 9:53 am weighing in at 5 pounds 3 ounces and 17 inches long. Let me start by saying what a day!!! I went into hospital on Sunday night (March 22nd) at around 5:00 pm. I was checked in and sent off to my room to start my blood treatments. The nurses advised that my surgery would probably be around 10 am the next morning as long as my fibrinogen level had increased enough. Well Monday morning things seemed to move alot quicker then expected. My blood levels from 6 am came back really good so by 8:30 am I was off to labor and delivery to get ready for the surgery. Once in the operating room the doctors and nurses spent about an hour putting in several IV line, arterial line and spinal block. Once all was done and my OB arrived the surgery was under way. I was scared out of my mind and crying about how things would go then my silly other half fell off his stool in the operating room which was completely hillarious!!! Changed my mood for the whole operation. It really wasn`t as bad as what I had expected. The weirdest part was having my legs and stomach all numb. All I was able to feel really was some tugging and pulling. After about 15 minutes little baby Brayden came crying into this world. It was the most amazing thing for the doctor to pull down the curtain and there he was, my perfect little 34 weeker weighing in at 5 pounds 3 ounces. The nurses took the baby to clean him up and all I could think about was if he was going to be ok. After about 10 minutes he proved to mommy that he was so strong that he didn`t need any help and was back in mommy's arms. The surgery itself took a total of about 1 hour to complete once the spinal was in place and working. I lost about 500ml of blood, which the doctor said was normal for a C-section and for someone with my blood condition, it was amazing. After the surgery I was takin to recovery for 3 or 4 hours for observation then transferred back to my room on labor and delivery where I stayed until Thursday. In total after the surgery I received 1 unit of whole blood and continous infusions of fibrinogen concentrate (blood products) until Thursday. I was then taken downstairs to the ward overnight and was put on daily infusions of fibrinogen. My sweet boy did not spend any time in the NICU, he spent all his time with mommy in her room. It took a little bit of effort to get him feeding and sucking but we have made it there in the end. Poor baby had a little bruise in his hand and finger from blood work, but thank god he does not have any type of blood condition. Finally on Friday night we were both discharged and got to come home for the first time. Other than being very very sore from the C-section we are both doing very well and enjoying every single moment together. :) Will post pictures as soon as and a special thanks to all who were praying for us :)

THE COUNTDOWN TO D-DAY HAS BEGUN!!

Well everyone it has been confirmed today that baby Brayden will be born on Monday, March 23rd by elective C-section at 34 weeks 1day gestation. I will go into the hospital sunday night around 5 pm where they will start my fibrinogen treatment to bring my blood level up and then I will be put on a continous infusion until at least 2 days after the delivery. At that point I will go back to being treated probably 3 times a week the same as during pregnancy for 6 weeks after. The actual delivery itself will take place in the main hospital operating rooms (theatre) rather than the maternity unit, that way all the doctors and specialists will be very close to one another. There will be a team from the NICU waiting with all the necessary equipment to stabalize the baby if need be. My doctor told me we should be able to see the baby before the transport him but more than likely he will at a minimum spend the first night in the NICU. This will all depend on how strong he is when he comes out. He has been such a fighter so far, I'm sure he will be just fine maybe only needed a little bit of help to start with breathing, feeding, etc. Is very strange to think that in just a little over a week I will have my precious baby in my arms *tear*. Will everyone keep us both in your thoughts and prayers that things go smoothly and problems with both of us are kept to a minimum. :)

Hospital stay

Well I'm back home after a 4 day stay in the hospital. On sunday I was lying in bed when I started having a visual disturbance like the room was spinning and felt really dizzy along with headaches and swelling. So I decided to ring the hospital and they told me to come in to be checked out. The OB on call decided to admit me for observation to keep an eye on my blood pressure. For the most part my blood pressure was fine and the headache seemed to wear off but was still having a lot of swelling in my fingers and legs. Then on Monday night at about 2:30 in the morning I woke up to go to the toilet and was having really bad pains down low on my stomach. At that point I asked the nurse for some pain medication (tylenol). She noticed I seemed in quite a bit of pain so she took me back to my bed and had a feel of my tummy and noticed I was contracting. She put me on the monitor and sure enough I was having contractions every 2 minutes for about 30 minutes. The nurse went ahead and paged the doctor on call to come down and check me out then said "If you keep this up you might meet your baby sooner than you think!" From that point I was really scared because I want him to stay in at least a few weeks longer. When the doctor arrived thankfully my contractions had started to ease up. During her exam she said I wasn't dilated nor was my cervix getting short. All was good news, they left me on the monitor for another hour and all settled and was able to go back to sleep. Since I have only had a few minor contractions but nothing to worry about. I was discharged from the hospital yesterday afternoon and have felt ok. Still have quite a bit of soreness around my pelvic bone but other that that not much else. I did have my appointment with my regular OB yesterday and she advised she will be booking my C-section during the week of March 23rd (34 weeks gestation). Am getting very nervous knowing that my little one will be here in a little more than 2 weeks. Just hope he stays put until then and continues to grow strong for his big birthday :)

GROWTH SCAN

Had another growth scan yesterday and little Brayden weighs a whopping 3 pounds and 8 ounces. Me and my younger sister had a bet going as go how much he would weigh and needless to say we both lost. He was bigger than both our guesses. Of course he was still really low and I doubt he will move from that position until he is born. Please continue to keep both of us in your prayers.

BABY BRAYDEN 28 WEEK SCAN

HOSPITAL TREATMENT DAY 20-2-09

Hospital

Had my regular appointment at the hospital yesterday, but had to go back due to some pains in my stomach. Was kinda weird, I was just sitting and all the sudden I had this really severe pain near my belly button and my stomach would get tight which lasted for about 45 minutes. With my blood condition I decided to go back to the hospital just to check things out. When I got there they hooked me up to the fetal heart and contraction monitor and all was fine. I got to see my regular OB and she thinks that because I have previous scar tissue from key hole surgery that is what is causing the pain. Also she said we would pick a date for my C-section at my next appointment on March 4th. It will be approxiamtely 5 weeks from now. So things are moving along and I'm getting more and more nervous but excited to meet my little baby. I just want him to be strong enough to not have to spend too much time in the NICU or have any major problems. We will love him with everything we have regardless, I just don't want anything to happen to him because we have waited and wanted him for so long now. I know everything is in gods hands and I pray that he continues to watch over us and keep us wrapped in his love and protection. Have a lovely day :)

Just a quick update.....we have made it to 29 weeks YEAHHHH!!!!! All is still going well. My doctors are on vacation this week so I have been told I have been forbidden of going into labor while they are gone. HA HA!!! But things have been going good only a few minor cramps here and there. I can really tell he is down low because I can't walk for very long before i get really really sore. So far this week I was at hospital on Monday just to do my treatment, but I was able to draw blood from my central line myself then draw my own blood from my hand after. Am very proud of myself for learning how to do those things as it helps me to feel more in control of my blood condition. This week I go back on Friday for the same then next week I have another scan on Monday. Will update as to how that goes. To Bess, thank you so much for praying for me and my little one. It really means alot to me to know someone else cares. I need all the prayers I can get as delivery draws nearer and nearer. God Bless

A BIT MORE ABOUT MYSELF

Just thought I'd take the time to tell a bit more about myself from the beginning. My name is Michelle and I was born with a rare congenital blood condition called Afibrinogenemia and secondary platelet dysfunction. I come from a family of 5 siblings, 2 brothers and 2 sisters. My mom did have her first baby, a girl when she was 6 & 1/2 months pregnant but she only lived for a few hours. It was suspected she had the same disorder that I have. My oldest brother Eddie also had the same condition but sadly he passed away from a brain bleed in April 2008. No one else in any of my family history has this condition, but both my parents had to be carriers. My father did have a platelet problem but was not properly diagnosed before he passed away several years ago. During my childhood, I had too many visits to the hospital to count or even remember. The only memories I really have are from my hospital records. As I young adult I had my first serious bleed at 18 where I lost 2000ml of blood from a ruptured ovarian cyst. When I was 24 I suffered a light stroke from a brain bleed. Fortunately the only side affects from the stroke are minor numbness in my left arm. Over the course of several years till now I have had about 7 other ovarian cysts rupture. They were all very painful but nothing compared to the first one, where my family didn't think I would survive. Other than that I have suffered numerous joint bleeds and swelling in different places from injuries. I have always struggled with the fact that I may never have children, and trust me that has been very difficult for me. Because my blood disorder is so rare there is just not enough documented history for the doctors to go by. So I received different opinions from different doctors. Some said it would be possible with fibrinogen replacement and some doctors said no, it was to dangerous to attempt a pregnancy. Anyway I probably would miscarry without treatment between 5 to 6 weeks. Most people don't even know they are pregnant at that time. Needless to say I felt like it was a lost cause. Then in August of this year I started having swelling and pain in my abdomen. I knew from the start that I had another bleed from a cyst that ruptured. I went to the hospital early one morning cause I could no longer take the pain. Sure enough I had loose blood from a cyst again. But God must have been looking over me because on that same day I found out I was pregnant!!! That day they started my treatment as a precaution until they got confirmation it was a viable pregnancy. I had a scan later that day to check the bleeding and the pregnancy. There was a gestational sac which they estimated me to be 6 weeks pregnant but there was no baby yet. After a few days in hospital I was discharged with an appointment for a follow up scan. After one week I went back for my next scan to find out there was still only a sac but no baby. My hcg levels were going up and the sac had grown but nothing more. The doctor sat me down and spoke about molar pregnancies. At the point I was very upset that the baby might not develop. Once again I went home with no answers, but still being treated with fibrinogen as if it was viable. After one more week I went for my next scan, and there he was with his little heart beating away. Words can not say how happy I felt. At that time they dated my pregnancy at 6 weeks, it was just too early in the other scans. Since then things have progressed normally in my pregnancy. I have gone from getting my treatment in hospital (1 bottle twice a week) to treating myself at home with 3 bottle three times a week. It has gotten to the point that things are changing the later I get in pregnancy. I have had a couple of stays in hospital. One day I was at the hospital waiting to get my treatment when I passed out for no apparent reason. The landed me in hospital for 2 days for observation. The other time I was having pains in my stomach so again was admitted for 3 days for observation. Both stays turned out to be fine. About a month ago my doctors decided to install a Hickman Line (central line) for my treatments. My veins were starting to blow very easily and I had resorted to sticking myself in the feet 3 times a week to access a vein. With the central line I have instant access to a vein. My doctors feel more confident with this line in place, that way if I come in with an emergency or bleeding they can start me on a transfusion straight away. The actual procedure was not that bad. I had a local anaesthetic and only a couple of stitches. It was very sore for a few days after but is fine now. So far during my pregnancy I have had about 9 scans and have them every 2 weeks or so. At one of my last scans they discovered the baby's head is already engaged. On that day they decided to give me the fetal fibronectin test. This is to see if I could go into labor in the next 2 weeks. It came back as positive, which meant I have a 50/50 chance of going into early labor. We spent the day talking to different specialists, viewing the NICU and getting the steroid shots to help develop the baby's lungs. It as been nearly 2 weeks and nothing has happened which is a blessing. I will find out at my next appointment if the risk still remains. It was decided however because of my blood disorder that my baby will be delivered early at 34 weeks. So either way he will be premature, just depends on how early as to how premature. With gods grace he will stay put as long as needed for him to grow strong. My fibrongen consumption has started to go up quite a bit. I am currently on 4 bottles on Monday and Wednesday and 5 bottles on Friday. I have weekly appointments with haematology to test my fibriogen level and weekly appointments with my OB and midwife to keep an eye on things. Thanks so much for everyone's continued support especially my family. Also I want to thank god for watching over us and for everyone's prayers as we continue on this unknown journey.

Had my hospital appointment and treatment today. Was on the day ward as my regular nurse was off today. All went well except it seems that my Hickman Line (central line for meds) might be infected. The nurse did a swab and changed my dressing, will have the results back in about a week. My chest near and under my arm where the line is has been slightly painful but I was thinking it's just where the line itself goes into the vein. If it is an infection hopefully they can prescribe antibiotics to resolve the issue. If not then they will have to remove the line and put a new one in. Hope not as this line has only been in for a month. Other than that things are going well. I have noticed today that I am starting to waddle when I walk....yikes :) We stopped by a couple baby stores today and picked up a few bits for the baby.

Yeahhhh!!!! So happy to make it to 28 weeks!!!! Things are going good, so far no signs of early labor. Each week is a milestone to get to which makes the baby that much stronger. Plus the fact that I have been eating enough for 5 people!! Once again it is snowing again this evening, had hoped it wouldn't as makes for difficult trips to the hospital. :)

Well today has been a very uneventful day. Am just figuring out the world of blogging so was able to change my page around a little bit. Looking through different blogs I can't believe just how many people are in need of prayers. I have added some links to my page for others to share in these stories that I find inspirational. Not much going on so I decided to give our little doggie Bailey a haircut and a bath. He didn't like it but I'm sure he feels much better now. Just doing that has worn me down for the day :) God bless.

Hospital Appointment

Well today has been a good day. Went to the hospital this morning for another scan and for my fibrinogen treatment. Brayden weighs an impressive estimated 2 lbs and 9 ozs!!!!! Was so glad to hear this as at my last scan over a week ago they could not get enough measurements to give us a weight. He was still in that low engaged position but was up just enough for her to get the head measurement this time. With the possibility of him coming early every ounce is a bonus! Treatment went just fine today, is getting to be a bit more complicated with the amount that I have to use. Just gotta make sure I keep my legs and feet moving to avoid any blood clots. I really can't express how happy I am with the ultrasound results today. Got to see my precious little boy smacking his lips together again today like he was sucking on something....was so cute!! Please continue to keep us in your prayers.

5-2-08

Am excited because tomorrow we get to see our little man again on ultrasound.....can't wait. Also have to get my treatment at the hospital as they have increased my treatment to 5 bottles of fibrinogen (5 grams) on friday. Will update tomorrow with how everything went.

my lil man @ 17 weeks

My lil man @ 17 weeks

5-2-08 1st EVER BLOG

After following the blog of little Kayleigh I have decided to post my own blog about our journey to parenthood.  I am 27 weeks pregnant with our first little boy Brayden Michael.  I have had a few ups and downs but for the most part all is well.  Here is a little recap of the last few weeks: Well, it's been 5 days since I had a positive Fetal Fironectin test (50/50 chance of going into preterm labor in the next 2 weeks)  and the scan that showed my little man's head is already engaged. (silly lil guy).......and all is fine :)  So far so good, only some minor cramps several days ago but nothing to worry about.  Right now I am taking the doctors advise and trying not to do too much, staying off my feet as much as possible.  I was able to get both the required steroid shots last week to help speed up fetal lung development.  It was very scary at my appointment with the doctors freaking out over early labor and my blood condition!!!  Me and my poor husband Andrew just sat there in shock!!!  But I am glad they are on top of things and it made me feel more confident after I got to speak with some of the other doctors that will be involved in my care.  After speaking to the Anesthetist, my one big concern was in regards to bleeding and the pain relief issue.  He completely put my mind at ease in both regards.  He had actually done some research about my blood condition and found 4 case studies (yes only 4 in the world) that have had successful pregnancies.  He stated that in all 4 cases ( 2 being vaginal and 2 being c-section) that the blood loss with fibrinogen replacement was around 600ml in the vaginal birth and the worst case was 2000ml with a c-section that had placental abruption. And on the subject of pain relief they don't want to do an epidural because the increased risk that I have of bleeding into the spine if it's only for pain.  But they have decided I can have an epidural if I start to get into trouble and the risks start to outweigh the benefits.  UPdate:  as of my appointment yesterday my OB wants to plan a C-section at 34 weeks to minimize risk to myself and the baby.  I will get a spinal block if my fibrinogen level is stable enough at the time, if not I will be put to sleep.  They want me to go into natural labor before then even if it is early as my body is starting to use up more and more fibrinogen . I also got to visit the NICU at the hospital to prepare us what to expect with a preterm baby.  Was good to see how well they are actually taken care of.  Please keep us in your thoughts and prayers that little bub will stay in as long as possible.