To All Angel Mommies this Christmas...

I find that I just want to talk about my baby sometimes. He was alive, he was beautiful...he was a gift from God. We were blessed to have him a part of our lives. I was blessed to feel his body grow within mine...to feel his feet kicking me...to know that his heart was beating inside of me. I get upset, especially at this time of year, when people disregard him. I know that it is sometimes how people deal with things. I've even been told "Don't be selfish, I don't talk about him to protect my emotional well being"...BUT what about MY emotional well being? as his mother who is still grieving the loss of her little baby, sometimes I just want to validate and reiterate his existence. Please let me do this...don't change the subject when I need to talk about him. This would have been his first Christmas, and I just miss him so much...

To All Angel Mommies,

We are Angel parents and though it’s sad it’s true,
We live each day in silence, just so not to upset you,
Choice we do not have because no-one wants to hear,
About the babies up in Heaven who we hold so dear.

We are Angel parents, it’s a lonely place to be,
People tend to shy away than stand and talk to me,
Only other Angel friends understand the way we feel,
They empathize and hold our hands because their pain is real.

We are Angel parents, not a title we’d hope to earn,
This was set upon us with the loss of the child we yearned,
No-one wants to be here, the membership brings pain,
The need to speak of our Angels is something we constrain.

We are Angel parents, it’s time we take a stand,
Voice our Angel stories because we know firsthand,
That this can happen to anyone, and though it’s sad it’s true,
The next poor soul to join this club may very well be you...

A Christmas Party in Heaven...

To Mark,

It's the night before Christmas, we're all filled with joy,
except when we think of you, our little Marky boy.

The stockings are hung by the chimney with care,
and in our hearts it's as if you were still here.

Your brothers are sleeping, in their bedrooms they lay,
but we're still filled with grief for our baby and that sad day.

You see, this would have been your first Christmas,
And having you here would have been pure bliss.

As I wrap up the presents my thoughts are on you,
and what we'd have bought if you were here, too.

A car, a ball, a red fire truck,
or maybe a rabbit's foot to bring you good luck.

The tree is all trimmed with bright coloured balls,
and decorations hang on all of the walls.

It looks so pretty - - I wonder if you see,
Your Christmas angel we've hung on the tree.

Tomorrow is Christmas; I'll try not to be sad,
I'll count all my blessings and try to be glad.

You've not a part in our future - - you were a part of our past
and someday I know we'll be together at last.

Almost 3 months has passed...

It's been FOREVER since I posted...
I've been rather busy and learning to live without our little Marky bear.

Since my last post, there have been several other TD babes that have grown their angel wings...the babes that are now healthy in Heaven, dancing with Mark are:
~Matthew
~Faith
~Chloe
~Fatima
~Hadley
~Gabe
Please pray that their families will heal their losses.

There is one babe Charlie, that was born at the end of August who is still doing quite well! Let's send tons of positive vibes his way that he continues to do well.

I've volunteered at the hospital on the maternity ward a few times and got to feed some itty bitty day olders! loved it. Made me sad but happy at the same time. Weird I know! but that's just how it feels. My days are so much better, more good than bad. I see the great joy in my boys and my wonderful man :) LOVE YOU JOHNNY!

Mark's memory will never pass. He is with me always. I think of him so many times a day! there has not been one day that has passed that I haven't thought of him and remembered how soft he was and the sound of his 2 little "mews". I know he is watching over me, and is with me...and that comforts me.

To Mark
I thought of you today and closed my eyes, and prayed to God. I asked what makes a mother and I know I heard him say: "A mother has a baby. This we know is true." " But God, can you be a mother when your babys not with you?" "Yes you can." He replied, with confidence in his voice. " I give many woman babies, when they leave its not their choice. Some I send for a lifetime, and others only days and some I send to feel your womb. But there is no need to stay." "I just dont understand this God. I want my baby here." He took a breath and cleared his throat, and then I saw a tear. "I wish that I could show you what your child is doing today.If you could see your child smile with other children who say:" "We go to earth and learn our lessons of love and life and fear. My mommy loved me oh so much, I got to come straight here. I feel so lucky to have a mom who has so much love for me. I learned my lessons very quickly. My mommy set me free. I miss my mommy oh so much, but i visit her each day. When she goes to sleep, on her pillows where I lay. I stroke her hair and kiss her cheek and whisper in her ear, Mommy dont be sad today, I'm your baby and I'm here." "So you see my dear sweet one, your children are OK. Your babies are here in my home. They'll be waiting for you at heavens gate. So now you see what makes a mother. It's the feeling in your heart. It's the love you had so much of. Right from the very start!"

it's been 3 weeks now

It's been awhile since I've written on here...it's now been 3 weeks 3 days since Mark was born, and we had the most wonderful hour and twelve minutes with him. I miss him soooo much. I have met some wonderful mothers through this journey, some that have had a baby diagnosed with TD and others that have had babes pass another way. No matter how, it is somthing that no parent should have to endure.

The days are better, and I'm crying a lot less. I've been keeping very busy. I just started a new job today, working at home for a great company (so far!). I have done some things to honour Mark's memory:

~I have set up a Facebook Cause, called Outfits for Preemies - In Memory of Mark Johnson. Check it out and join if you can! We had time to prepare for Mark's early delivery, and had an outfit picked out that he would wear. However, there are so many parents who are not prepared for the early birth of their babys, and that is what Mark's cause is for. To provide preemie outfits to the hospitals for parents in this situation.
~I have donated Mark's cloth diaper stash to friends and mamas who are in need of them.
~I have started the process to become a volunteer at my hospitals Mat/Child ward.
~I created a video, that shows Mark's life, before and after.
~I created an online memorial, with music and pictures, so people can go and light a candle or send a tribue.

I will be doing on-going things like this...these things are helping me in my grief process. Just knowing that his short little life is continuting to mean so much to people...that just makes me feel so good.

There have been so many other TD mamas in our little "group". There were about 8 or so, and all of us have had our babes with the exception of Fakeha, who is being induced today. My thoughts and prayers have been with her all day...I know that what she is about to go through will be so hard. Thinking of her is reminding me of the day I had Mark...all the feelings and emotions. Excited to be in labour and knowing you'd soon feel physically better, excited about meeting Mark, terrified he wouldn't be born alive, finally meeting him and having the feeling of utter pride and the most love a person can feel, watching John hold him and feeling a deep sadness knowing what is to come, feeling scared again, proud again, love again...and then the time comes when they pass and having this deep soul wrenching sorrow. That feeling stayed with me for about one and a half weeks.

I also now have this need...a strong want, to have another baby. I don't know if it's the grief talking or not. I know that another baby would not heal the pain, and I don't want it to. The pain is a part of what I have left of Mark. I think that another baby would help me to heal though...I don't know how to explain it. I don't know if I should get pregnant again though, with the cholestasis that I get when pregnant...it gets worse each time, and it was pretty nasty this time around. But I know it's controlable with meds and regular blood testing and fetal stress tests. And I also know that it was made worse with the other issues I had related with the TD. Ah, well, this is a decision that will come with time.

I still am planning on writing all about my labour and delivery. It's been hard, but I think it's time to do it in the next week :)

Johnny...when you do sit down and read this: thank you so much for all of our wonderful boys and being the great man you are...I love you so much.

2 weeks later...keeping Mark's name alive!

I wanted to say Thank You, to everyone who has followed our Journey with Mark. All of the thoughts, prayers, and good wishes have meant sooo much to us.

Since Mark's birth, I have been collecting preemie clothes. I have asked for donations, and bought a bunch. Yesterday I delivered the first batch to the hospital I had him at...we were able to give 23 preemie outfits in honour of Mark!!! This is somthing I will be continuing to do through the months and years.

Again, thank you all!!!

**mama and dada love you Marky Bear!***

Mark has been in Heaven for One Week

I made this today. I really LOVE this pic, but the original was all dark and blotchy, with grains and hard to make out. So I found a photo editor online and look at how awesome it came up! It has been one week since the birth and passing of our little babe. It has been the hardest week of my life. I do feel a bit better each day, and can almost feel him with me. The day before I was induced (so Thursday July 8th) I was on the computer and I looked up to the window (our computer is directly under the window with the a/c) and there was a dove sitting on the a/c (on the outside of course). He was just staring at me. He had to have been about 2 feet away and he stayed there just looking at me for like 2 minutes. The next day John saw him on the same spot, and I just saw him now. It's like Mark is saying "I'm still here with you mama and papa".

4 days after having Mark

Right now it is 8:56 am on Wednesday morning. 4 days ago Mark would be alive right now, and he was being baptized and kissed and snuggled, and being told how much dada and mama love him.

It's been 4 days since we had my Mark, and I cannot stop crying. I feel so empty, like somthing is missing now...even though I have 3 other boys, a wonderful, amazing husband who I love sooo much, and I really do LOVE my life. It just feels as though our family will be missing a very integral part of it...Mark.

My milk is coming in today, and it hurts so bad to know that my babe is soppose to nourished by it. I find myself talking to my belly, as is habit, and then go to rub it like I always did, and he's gone...Johnny says he can still hear me even though he isn't here physically; I really really hope this is true! Every little thing has to do with him...even doing the dishes. I look down to where my belly would have been, and think "he used to be right there hundreds of times, alive". I went to the store yesterday for the first time without him, and couldn't contain myself. I THOUGHT that I had come to grips with things...that I had learned over the months to accept this as God's plan, and to be at peace with it. But now....I'm feeling NOT at peace with this, and so upset at times that we have to lose our babe. We are good parents, and wanted him soooo bad. There are so many mothers that don't want their babys, and abuse them, and take drugs with them...why not one of the ones that don't want their babys anyway?

With my situation, I had numerous issues with the pregnancy, and they felt that it best if I did not receive a c-serction, so it was deemed essential to have a vag. birth. They monitored me closly and said once his head reached term they would deliver. My last US at 30 weeks 6 days indicated his head was at almost 38 weeks so induction was set for later in the week. I was 31 weeks 3 days when I had him. I also had tons of fluid, polyhydramnios. Also, Mark was a footling breech and they could not turn him, though we tried. Due to all the water, they could not get a good hold on his body to turn him. They did not break my water until I was 10 cm because of the fact that he was a footling breech (I guess that to dilate, the cervix needs somthing firm to be pressing on it, and feet wouldn't do the trick).

Right before they broke my water, I felt him move for the last time. Because his feet were on my cervix, that is where I felt him. He was dancing! it felt like a little 2 step *smile* He was telling me he was excited to meet us! Once I was 10 cm they broke the water and there was a massive flood! he came out right with it, no contractions...he just washed out! I think that the force of the water did it. He was purple...then they gave him the free flow oxygen (which was a tube we had to hold to his nose, unlike the one with the 2 nose holes that they tape to the face)...that sucked because we always had to have one hand holding the tube, so we couldn't have both hands free. Needless to say we are soooooooo happy we got to hold him alive for 1 hr 12 min. It really meant the world to hold him while his soul was still with him...but I really wish he had been responsive. After he was born, he made 2 attempts to cry, little "mews" really. It was so cute, he was really trying to be strong for us and show us how he wanted to be there for us. But he was too tired, and he gave up. He couldn't open his eyes, or close his hand, or move. He became unresponsive and didn't move. It was like he was sleeping the whole time. I really wish I could have seen his little eyes and seen him move. But I also know that this way there was no suffering at all. He didn't gasp for breath once. It was like he was asleep and his heartrate just kept getting lower and lower, until the angels said it was time to go with them to heaven.

We miss him soooooo much. SOOOO much. We LOVE YOU MARKY BEAR, and can't wait to hold you again one day.

My next post will be details of the labour and birth. I just can't do anymore today. I will be doing it soon, so I don't forget anything...and this is why I'm doing this blog. So I never forget one detail. I also want other mamas and families dealing with this to know that they are not alone. I know that other blogs helped me so much while dealing with this.

The Birth of Mark Johnson...Our Own Personal Angel

Mark Johnson was born on Saturday July 10th, at 8:31 a.m. He weighed 3 pounds, 12 ounces and was 13.5 inches long. We were blessed with one hour and twelve with Mark, before he went to his heavenly home at 9:43 a.m. Mark experienced holding hands with his mommy and daddy, hugs and kisses, being baptized, and being told “I love you” an uncountable amount of times. Mark is deeply loved and will always remain our precious baby...Mark, we will hold you again in heaven one day.

I will be writing more about this later this week, but right now I can't.

Another TD babe, Faith, is on the way

There is another mama who is 32 weeks along right now. Her baby, Faith, is also a TD babe. Her water started leaking yesterday, and now since they believe she is a high risk for infection they have induced her. Please also send your positive thoughts and prayers to her, her family, and little baby Faith. Anna, I pray for a miracle for you, and if that is not God's will, I pray you have lots of time with her. She and Mark just might share a birthday, and enter heaven holding hands. *hugs*

It's time to meet Mark, for real this time

I had another ultrasound yesterday and my OB thinks it's best that I get induced this friday morning (July 9th). My liver enzymes are still looking good, but I have developed polyhydramnios. Polyhdramnios is a build up of amniotic fluid. It is common for TD babes. Their little chests are too small to hold all of their organs comfortably, so the organs get constricted and crowded. Due to this, their throats also get constricted and they can't swallow properly, so the fluid just builds up.

I am 31 weeks today, and measuring 39 weeks due to all the fluid. I went from measuring perfect for dates 2 weeks ago (so my belly grew 10 weeks in 2 weeks!). Mark's head has also gone through a big growth spurt. His head was measuring at 32 weeks 2 weeks ago to now measuring 38 weeks. Due to the bleeding disorder that comes with cholestasis, I am NOT to have a c-section if it can be helped, so I will need to deliver this week before his head gets too big for a vag. birth. He is also breech right now, so I'm really hoping that he will turn for me in the next couple of days.

We got about 2.5 weeks extra with him; for that we are soooo very greatful. He has gone through a big growth spurt the last 2 weeks, and now is almost 4 lbs at their estimation.

We are still praying soooo hard for a miracle! they DO happen. Please Lord, let our baby have a type of dwarfism that is compatible with life (by measurments, we know he has some sort of dwarfism). We would love him to run and play, and know life. If this is not to be your plan for us and Mark, please let us have lots of time with him. I read a story from a mama who had a TD babe 2 weeks ago and he lived for 30 hours! I would LOVE to be able to breastfeed him at least once, and give him a bath. We would love to take him for a walk and show him the trees and birds. We want to give him at least a thousand kisses :)

Other Mamas dealing with TD

There is a facebook group that is for family members of babes with TD. It has helped me cope alot, and meet other mamas going through, or have gone through, this experience with their babys. Right now there are a couple other mamas that could also use any positive thoughts and prayers. One is Anna, and her little babe Faith (her blog is here: http://mybabyfaith2010.blogspot.com) and Amanda, and her babe Chloe. Also, Jackie just gave birth to baby Jerry who had TD and lived about an hour and a half, and Cambyre recently had baby Zannah.

29 Week Ultrasound

Here are a couple pics of Mark at his 29 week ultrasound...the first is of his little arm and hand, and the second is his face :)

All of the Prayers have Worked!

...for now at least! Keep them coming!!!!

We drove to the hosptial Wednesday morning with VERY heavy hearts...everything was making me cry. As John and I walked into the hospital to be induced, all I could think of was "I am walking into the hospital with my baby, and I will be leaving without him". Not fair. I want him. I want to have that ecstatic feeling you get when you know it's time to go home and start your new life with your baby. But I knew I would be handing him over to God.

I registered, and as I got settled in triage waiting for my OB, Johnny got the camcorder out and we started the film of Mark's birth. We did this with Michael too. We started out before induction and would film every hour or so updates, the clock on the wall, my progress, etc. Last time it was really happy, this time both John and I were teary as we told the date and time.

When my doc came in, I was fully expecting her to go over the process again, the risks of staying pregnant, and all that stuff they go over before being induced. We also had an ultrasound tuesday, and knew she would be going over that with us. We got a total different direction. She told us that the prognosis was the same as per the US. Not a shock. His head is measuring 32 weeks and I'm at 29 weeks, so really his head has slowed down it's growth! a good thing. My fluid level is high, but still within normal range. Another good thing! The issue is my liver enzymes. That is the reason we would induce. HOWEVER...she explained that we could wait a couple weeks if we were prepared to be monitored closly! She explained that my liver is not in imminent danger of failure, though this can change quickly. She said that she is confident that if she keeps a very close eye on me and tests my levels alot that we could keep Mark with us a bit longer. Why, John asked, did the OB on call this weekend express an urgent need to get this baby out ASAP?

She explained that the Dr. on call Friday (who is a great dr.), as most doc's would do, expressed an urgent need to have this done because medically my liver is not good. The baby's prognosis is not good. Why risk any risk to mother, when the outcome for the baby will be the same? BUT, my doc knows John and I. She delivered Michael and went through this ICP with him as well (though not as severe). She also knows that spiritually it is very important for John and I to have as much time with Mark as possible, regardless of the inevitable outcome. So, most docs would induce due to the medical perspective. But she is here for us not only medically but also spiritually. She said that she wants me to come in for regular blood testing and ultrasounds. Once my levels are close to 1000 she will induce. Also she wants me to watch for bruising or bleeding (out of any orifice) which would indicate a clotting problem. I am to avoid a c-section at any cost due to ICP causing a vitamin K deficiency hence the possibility of hemmorage.

I love her for this!! This will give Mark a bit more time to grow, making him a bit more mature, making the possibility of him living longer on the outside once he does come. We are so excited :)

I want to thank you all soooo much for your thoughts and prayers! God does hear us.

only 2 more days with my babe

I now have until wednesday at 9:30am before the induction process begins. I'm scared, sad, and I hate the unknown. I had planned to have Mark around for at least another 4 weeks or so.

I have his little outfit, which I had to alter. He's only going to be 29 weeks, so around 2 lbs. I found a 4-5 lb preemie outfit which I cut the legs and arms and hemmed so hopfully it will fit him somewhat. We have a hand print plaster kit. We have a charm braclet with his name...the charms are a cross and an angel. We have a little box for piece of his hair. We have the camera and camcorder ready. I made him an Angels Pocket blankie to be carried to the funeral home in. I made it out of cotton velour and minkee blankie. It is esentially a small blanket with a pocket so you can wrap them up tight in. I also have a pregnancy/birth journal called "In the Company of Angels". It's a baby book for angels. It is still enroute, I hope it gets here soon.

I have 2 more days with my babe...I have been trying to have special private time with him. I have told him how sorry I am for this. I have told him how much we love him and always will. I have told him I cannot wait to kiss him and touch him. I have told him I cannot wait to see him again in heaven.

and now the itching has begun

This is monday...last tuesday night I started to get really itchy at night, I mean really really itchy. I know this itch, it is the ICP itch. I called my OB on thursday morning and asked for a req. to get my bile acids and liver functions taken.

The next morning I get a call from my OB's office saying my liver functions are really high and to go to the OB/Mat and talk to the OB on call about it. It turns out that at 28 weeks my ALT levels were 285 (even with Michael they were at 120 which is high to begin with at 34 weeks). It takes more than a week to get the bile acid test back. The regular liver functions numbers are 0-30. The regular bile numbers are 0-8.5 (I don't remember the measurement sorry!). The OB said she wanted to induce because the risks are very high. The risks apparantly include a vitamin K deficiency (normally it can be handled but my levels are so high), which can cause lowered clotting and I could bleed to death. Also, normally with ICP they let you go to 36-37 weeks and then induce you, so you only are damaging your liver for a couple weeks and the liver will regenerate itself. With me, I'm only 28 weeks, and the numbers will only get higher and higher, causing the liver cells to die, which can potentially cause permenant liver damage, cerosis or liver failure. There were a couple other risks but those are the biggys. She said it might NOT happen, and it MIGHT happen tomorrow...liver enzymes can rise quickly as my situation proved. I told the doc. that I did not want to induce that day...I needed things, keepsakes, and I have an ultrasound appointment tuesday. I want those pics! So, she told me to come in on sunday (yesterday) to get tested again and if the levels went up drastically they would induce then, if not then I could wait until wednesday. The numbers yesterday were only up about 20, so not drastic.

What a couple of weeks this has been...

2 weeks ago tomorrow (tuesday) I had some terrible belly pains, and just thought that it had to due with my growing tummy. When John got home from work I thought that I might be able to walk the pains off, so I went shopping for some goodys. When I got home, I made dinner and went on with our regular evening family activities but the pains continued to get worse and worse. They weren't like contraction pains it felt like the pains I had when I was pregnant with Michael, but more constant and throbbing.

When I was 32 weeks pregnant with Michael, I had stabbing pains in my upper stomach in the general area of my stomach. It ended up being a gall bladder attack. 2 weeks after that (at 34 weeks) I was diagnosed with ICP (Intrahepetic Cholestasis of Pregnancy) after itching like crazy. The bile ducts get blocked due to increased estrogen (I'm estrogen sensitive) and the bile has no place to go so it is sent into the blood stream. The buildup of bile and bilirubin causes unimaginable itchiness...it feels like you're wearing a suit made of insulation, it's an internal itch so even scratching only helps while you're scratching. It is primarily concentrated to the palms of the hands and the soles of the feet, but can be anywhere. It is worse at night. The liver gets damaged from this bile buildup in the blood and the liver enzymes go up. The only way to resolve it is to give birth. The itching can be regulated for some people using Urso, which reduces bile in your body. It takes 2 weeks + for it to start to work and give some relief. It did not work for me. The bile buildup can poison the baby slowly as it passes the brain barrier, and stillbirth is increased to 10%. ICP affects .5% of pregnancies. It normally starts mid third trimester to late third trimester. If you have it once, you will probably have it again and it gets worse each pregnancy (90% chance as it has to do with a sensitivity to estrogen).

So, after getting the boys into bed and watching about 20 minutes of America's Got Talent, I told Johnny I needed to go the ER because somthing was wrong. I couldn't eat, couldn't sit, couldn't sit still it hurt so much. Johnny is so wonderful...I just need to reiterate how much I love him and appreciate him and respect him :) When I got to the ER they sent me up to OB/Mat. The doc. on call ordered bloodwork to see if my liver enzymes were up (indicating the ICP had set in). My #'s were fine so she sent me home, saying I must have eaten somthing bad...though I KNEW I hadn't since I hadn't eaten all day! So I went home, and tried to sleep, but the pain got worse and worse. I even had a bath at 3am trying anything to get the pain to go. I went back to the ER at 4am.

They did all kinds of tests, ultrasounds, and nobody could figure out what was wrong. 2.5 days later after sooooooo much pain (I'd rather be in labour!!), my OB sent for a general surgeon to come and have a look at me. After about 2 minutes he said he thought it was appendicitis. At 9:15 pm that night he had another surgeon come and look at me, and they both said yes, it appears to be the appendix, and had me in surgery by 10 pm that night. My appendix was so far gone it had already partially ruptured and started to go necrotic (where it rots and falls apart)...gross I know LOL I was very very lucky that they caught it. Apparantly pregnancy can mask the symptoms until it's almost too late, so if you have anypain in your upper belly GO TO THE ER, because a ruptured appendix can kill you.

So it has been one week 4 days and I feel great! the incision is looking well, and I feel almost back to normal.

26 Week UltraSound

I had my 26 week ultrsound this Tuesday. I was so excited to see baby Mark! I brought Johnny's mom with me to see (she's visiting from out East). The ultrasound was to look for excess fluid, and to do growth measurements. The tech. was really nice, and did give me some of her feedback on what she saw but couldn't tell me certain things (I have to wait to see my OB next friday for the complete report).

What she did say was that there are some changes from the last 20 week ultrasound. Mark's head is growing larger than it should be at this gestation, and the shape is changing a bit...his skull is taking on the shape of a clover leaf, which is consistent with the TD type 2. This did not make me happy, of course. I was really hoping that they were wrong and that this US would show him normal and healthy...I know, a pipe-dream, but I'm his mama and I'm entitled hope. Then to see his little limbs had only grown about 2mm in 6 weeks...that made me cry. His limbs are measuring the length of a 15.5 week old baby, almost 11 weeks behind.

He looks so amazing though! he's gorgeous, and so cute with that little button nose and big kissable lippys :) he's going to have a bunch of smooches planted on those lips as soon as I get to hold him! he was moving like crazy...the tech would go to point out a hand just to have him wave quick and take off turning around LOL. The good news is that my fluid levels are just fine for now. The tech was great and took a bunch of the pics she got and put them on CD for us instead of just paper.

I've had some bad days, about one a week, where every little thing sets me off. The majority of the time though I'm trying to stay up beat and positive. I'm trying to think of Mark as my little angel baby, that has chosen John and I as his mama and papa for a reason and we chose him as well. This is going to undoubtably be the hardest thing we have been through, but it will be joyous as well in certain ways...to have him grow in me and live under my heart every day makes me so happy I don't want it to end...because I know what the end of the pregnancy will bring. I was soo anxious with the others to have them out and meet them and get on with their lives with us...but it's totally different this time.

25 weeks today

I'm 25 weeks today :) getting big! My belly is very low, "pointy" and "sticky-outty" for a lack of better description...my best girlfriend is also pregnant, 21 weeks, and her belly is even and pouchy; amazing how different they can carry! I guess you'd say I have a torpedo belly :)

I had an appointment with my Periontologist today in the big city about an hour away. I have to see him every 4 weeks for now until I'm about 32 weeks along. He's a great doc, very compassionate and understand, and totally supportive of what we have decided to do.

I found out that we can NOT donate his organs :( that is really kinda sad, because we thought it would be awesome if Mark's organs could help another little baby live a healthy life. Apparantly because of the gene mutation, this can cause issues. I also asked about cord blood. My mother had said that she would give this gift to us if it was do-able. But apparantly it isn't. Because the cord blood contains original stem cells, it would contain the gene mutation, therefore not good for treatment if ever needed. Again, that really is too bad. It would be somwhat nice to know Mark's blood was always there. He did say however, that he THINKS the bone marrow might be usable, and hence donateable. He has to look into this further, as he is not sure. He said if IS, he would set it all up for us :) I really hope so! I'd love to be able to help a little babe live from our babes life.

My OB had told me 2 weeks ago that I was measuring almost 4 weeks big, which would indicate polyhyramnios, which is not a good thing. Today he measured me and I was only 26 cm so only one week big! this is totally normal :) soooo happy about that.

I can't wait to see Mark on the US Monday! Once I turn 32 weeeks, I have to have an US every 1.5 weeks to determine Mark's head size and my fluid levels. Once his head gets to be 35% over the norm, they will induce. I wish they did the DVD US here in Canada...but they don't. We should however, get a pic if we ask. I will ask for several! I want as many as we can get!

We were told by the radiologist when we were officially diagnosed at 20 weeks, that Mark had 98% chance of TD and 2% chance that it was not...but I was told today that it was in fact quite less than that. He said that the 2% diagnosis failure rate was the radiologists INITIAL thoughts. He said that after that US, there were 6 specialists that looked and all concurred without a doubt that this was in fact TD. I told him that we would not give up hope, that we will keep praying for a miracle...and he said that being a Catholic man, he knows miracles happen, and hopes beyond hope that he is wrong.

More about it...

So, there are a few things that I'm really hoping will have changed when we go for our next ultra sound appointment on June 1st:

~that his long bones have grown...they were 7 weeks behind

~that his ribcage has grown...the circumfrance was 11.2 cm. There is a ratio they use to determine whether a skeletal dysplasia will be fatal. Thoratic Circumfrance / Abdominal Circumfrance. If it is <.16 then it is usually fatal, if >.16 then usuallly not. The accuracy of this ratio is 95%. Mark's TC was 11.2 cm and his AC was 15 cm. which is equal to .1 (a very good thing)

~that his head is staying in the normal range...it was 1.5 weeks ahead, but big by only a couple weeks is still considered in the normal range

~that there is no evidence of polyhydramnios...the excess amniotic fluid is caused by the babys constricted throat, making swallowing of the fluid more difficult, so it just builds up.

These are things that I know will not make all the difference in the world, but just MIGHT. I have now read 4 storys of misdiagnosis...and will continue to hope and pray until we have him. I'm questioning why they would not do an amnio on me, to see if Mark has the gene. I asked if that was the next test we should do, and they said "there is no need for further testing". But, most of the moms who have been diagnosed have had it done. I'm also questioning why they aren't taking into consideration the ratio thing...he is above the fatal ratio...which means his lungs should have some room to grow. Confused. I have lots of questions to ask my periontologist next week.

check out www.cortmcgowan.blogspot.com for the story of Cohen McGowan. He had a diagnosis of TD at his 20 week US as well, and even though his chest still measured in the "fatal" ratio when born, defied the odds and is a sweet little HEALTHY cutie pie!

The Beginning

I've decided to blog about the journey ahead of us with our baby Mark who was diagnosed with Thanatophoric Dysplasia (aka thanatophoric dwarfism) at our 19 week ultrasound (that was 5 weeks ago; I'm now 24 weeks). With this blog:

*I want to spread awareness and help others going through this in some way,
*I want to have documented my pregnancy and our life with Mark,
* and I want to honour his life with memories. We don't want to forget ANYTHING...

I will start off with the Wiki definition of Thanatophoric Dysplasia:

Thanatophoric Dysplasia (dwarfism) is a severe skeletal disorder characterized by extrememly short limbs, extra folds of skin, narrow chest, small ribs. Due to the small ribs and chest, the lungs cannot fully develop, therefore cannot sustain life once born. The term thanatophoric dysplasia is greek for death bearing. Babys with this condition are usually still born or die shortly after birth from respiratory failure. This condition affects about 1 in 60,000 births.

Our Story

John and I have been together now for 7 years next week! wow...how time flies :) I love him so strongly, somtimes it's hard to believe that I actually have found the other half of my soul...we are alike in so many ways, and have so much respect and love for each other. We are truly blessed to have found one another.

We have 5 children between us, Jayla 18 years, Alex 14 years, Bryan 3 years, Michael 20 months, and our 24 week bun-in-the-oven Mark. Our kids are our lives, we adore them all soooo much it's hard to put into words! again, we are truly blessed to have them.

Back in November '09 I was having some bad stomach pains, in the area of my left ovary. The pain was literally doubling me over. It lasted about one week. I let my doc know, and he told me if it continues again next month to come back. Well again in the middle of December it happened, but I just lived through it...with the holidays and such I was so busy and didn't really think anything of it. So again in the beginning of January it happened again, but way worse this time. So I went to the ER as my doc was on holidays. They did a pregnancy test and voila, I was pregnant! We were totally not expecting this! they did an ultrasound to see the babe and couldn't see anything (I was about 5 weeks at this time) and my HCG levels were SUPER low. They told me to expect a miscarriage and to come back in a few days for another US. What a double whammy...to be told you're pregnant and then to expect a miscarriage! So, I went back in a couple days and had another US and blood work. Again the HCG was low, although it WAS doubling as should be. And again they saw the sac but nothing in it. So again I was told to expect a miscarriage. They said to come back in a week for more blood work and another US. What a week! no miscarriage came... So, again I went back to the ER for more bloodwork. This time, the HCG levels were right where they should be, and during the US she saw a baby and a beating heart!!! I was 6.5 weeks at this time. We were told this time: That We Were Having A Baby!

Both John and I were happy to be expecting another babe...another little newbie to nestle in between us at night (we co-sleep with our babes), as our Michael had just been moved to his own bed recently. I had slight morning sickness, but nothing major...mostly food aversions. I had another US at 9 weeks, all went well. I had another US at 12 weeks, all went well. Then it was time for the 19 week US, Thursday April 15th. We were so excited to see our babe moving around! we also were so eager to find out the gender. During the exam the US tech. was pretty quiet, when usually they are quite chatty. I didn't think too much into it really, maybe she was having a bad day. Both John and I did notice that she took TONS of pictures, and the US took a bit longer than normal. But again we didn't think too much into it. And then she showed us: we were having a BOY! wow! 4 boys! We decided the next day to call him Mark, after Johnnys uncle.

On Monday I got a call from my GP saying to come into the office that afternoon to discuss the US report. We were nervous. When I got to the office, the Dr. told me that there was somthing wrong with the baby. That he had a form of dwarfism, and there was indication of a heart issue. He had never heard of the type of dwarfism they were suggesting, so he wrote it down and told me to look it up when I got home. These 2 words have changed our lives: Thanatophoric Dwarfism. I felt numb, like I was in a dream. This couldn't be happening to us...but then, little people are so sweet and perfectly healthy for the most part...we could handle it.

When we got home we looked up the definition of TD. When I read the Greek meaning (death bringing) I cried. I cried for the next 2 days until our OB appointment. Our OB set up an appointment with the high risk periontologist for the next week. She also gave me the US report with all the measurements. During that week I looked up as much as I could about the condition. I found out the ratios that determine whether a skeletal dysplasia is fatal or not. I found out what the normal bone lengths are. I searched for indications of surviving children with the condition. I searched for indications of misdiagnosis. What I found was so sad...there is not much hope at all for a baby with TD. They simply cannot breathe once they are born.

We held out hope that maybe the first US was wrong. We were hoping that he was just going to be short, or just a little person, but otherwise healthy. We just hoped so hard that they were wrong. The day of the appointment came. Tuesday April 27th. We were to go and have the level 2 US, at which time the radiologist would tell us his first impressions. Then we were to have a meeting with the head Periontologist, Geneticist, OB, and a few others to discuss the results. During the US I asked the tech. all kinds of questions. I asked the chest circumfrance, the abdominal circumfrance. I did the math in my head for the ratios and was not happy. The chest circ. : ab. circ. should be 80% - 100% in order to not be fatal: Mark's worked out to be 77%. The head radiologist came in after looking at the pictures and started showing John and I what he saw. He saw long bones that were now 7 weeks behind, with bowed femurs. He saw short ribs that don't go all the way around as they should. He saw narrow ribs. Normally there should be gradual and subtle sloping from the chest to the abdomin. With Mark, there was the chest, then a steep incline upwards, like a step. This meant that the chest is so small that the heart will fill most of it up, so that when it's time for the lungs to develop there will simply be no room. He then told us that of his 18 years in US, this was one of the more predominant cases of TD he has seen. We knew that that meant. We sobbed. The type of sobs that overcome your body, and you make funny gasping noises. We were heartbroken.

Our appointment with the panel was not for a couple hours, so we wandered around the hospital in a daze for the most part, crying now and then, and just holding hands and leaning on eachother. When it was our turn, they basically told us that it was definitly TD, they were 98% sure, and that he would die either in utero or shortly after birth. They gave us 3 options: to have an abortion - which was out of the question right away, an early induction, or to go as far as possible with the pregnancy. This was so tough at first. I was so afraid that if I carried him any longer I would be an emotional mess for the rest of the pregnancy, that we would be just prolonging the pain etc. We sat down with a priest, we discussed our options, and the more we thought about it, the more it made sense to carry him.

~Yes, there would be hard hard moments of pain.
~Yes, the outcome might be the same as in his passing away.
~And yes, there might be some pregnancy issues to deal with.

BUT,

~we would have Mark for longer, living healthy inside, kicking away, LIVING.
~We would get to hold our baby and hopfully he will be born alive so we will get to look into his beautiful eyes and just be with him.
~we will KNOW we did everything we could to give him every chance he has.
~plus, there is 2% chance that they are wrong :)

I have never been a totally religous person, but I am spiritual...this experience has made me believe that if it is God's will, he will heal our Mark. If not, it is for a reason that he has come into our lives.

Since making this decision, I have a total feeling of peace. I do have my moments though, don't get me wrong. When I read other people's experiences, I sob, but it also helps me inside.

Our Deepest Wishes:

~that God will perform a miracle on our son, and heal him.

~if healing him is not in God's will, please let him be born alive so we will get to hold him. I feel him alive everyday, and I want to hold him breathing, and remember his sweet face that way.