Tuesday, February 23, 2010

What my son taught me in just 18 weeks


I break down everyday thinking about my baby boy. I remember how his heartbeat sounded for the first time and how badly I cried. I remember seeing him grow at every ultrasound. And finally feeling him move inside my tummy. I miss him more than anything. I never thought I could miss someone more than my husband. Not because my other angels are not loved and missed but to me there is a huge difference in a 6 week loss and a baby that has been living inside me for 18 amazing weeks.



Knowing a baby and watching and feeling it is a completely new experience to me. One that I was scared I'd never feel. Beldon gave that wonderful experience to me. I am forever grateful for knowing my baby boy and I can't cherish him enough. He did so many amazing things for me and Nick. Things I never thought could happen or exist.



Knowing Beldon brought my best friend back to me. He made Nick and I realize how much we really loved each other and that we could get thru anything if we were together. We lost sight of that because we were more focused on our surroundings and the stress in our lives. Things have never been easy for either of us and its been twice as bad with the 2 of us in one room :)


Beldon also gave us hope. Hope, that one day we can bring home a baby. A healthy baby. I now know I can carry a child and will not lose every pregnancy almost as quickly as we find out about it.



I have a new strive for life that I lost when my husband was killed. My little baby showed me that light that I needed back in my life so badly. The sound of his heart beating, the movement I felt inside me, seeing him on the screen during the ultrasounds... It made it all real for me. I will never forget the day of the amnio when we saw his foot clear as day on the tv screen. We both saw it and our hearts melted. Even though we knew in our hearts we would not be bringing him home... we knew we loved him more than anything in the world. We felt a love like never before and it was a new love for each other that was built from it.



We've been painting our new home and decided to wait on painting the nursery. We wanted to make it personal and not just a painted and decorated room. We wanted it to be made according to how we felt about our new baby when we get to know him or her. The way we knew what we wanted for Beldon, should things have turned out differently. But with every brush stroke and every inch of wall that gets a new color I can't help but to feel my heart break that we are not painting for him. That I won't be able to paint his room and bring him home to it. I broke down one day and Nick came over to console me. I threw myself into his arms and sobbed "All we wanted was a little girl and now I would give anything to have my little boy back". He knew exactly what I felt.



I think we both have a different feeling about the baby we will make next. We would have loved our baby more than anything no matter what the gender, but the way we feel about having a girl (first) has changed drastically. We won't think or joke about a girl or a boy. We will not pray for a girl or be 'disappointed' if we have a boy. We will pray for a healthy baby and nothing more. We will only be disappointed if we cannot bring home our next miracle. It is no longer about anything even remotely material. Not about pink vs blue. It's about loving that baby more than we ever knew we could. We have felt what it's like to love for the first time in our lives. To really love. Stronger than any love we could have for each other.



Beldon taught us so much. He made us whole. Nick is a father and I am a mother and there is no greater feeling in the world. He will always be our greatest inspiration and I can't wait to tell his story to his little brother or sister. They will know how special their guardian angel is. We will take all the love and hope he gave us and it will blossom the second that next test turns positive. Thank you baby boy for everything you gave us. We love you always and forever.

Sunday, February 21, 2010

The Shock - My Delivery Story 2.09.10







I'm sure everyone can understand the build up to that awful yet beautiful day.




The day after we got the news from the doctor, who we were grateful called us back at 8:30 pm on a Thursday night, called again the next morning. "I need you to change the day to Tuesday. Monday is no good." Ok I said. (Great! Now I get to think about this for another whole day.) "I checked with the delivery staff and it is not in your best interest to go until Tuesday. The girls on staff will not be supportive because of the situation. You don't need anyone to make this any harder on you then it already is." I wanted to say "because I'm killing my baby who will die in my womb at some point in the next couple weeks. I get it." They didn't want a baby killer in their hospital bed. Neither did I. So let's call it off!



Tuesday it was... And I was forever grateful for it.



I broke down Sunday night because he moved for the last time in my belly. I don't know how I knew that it was time to say good bye, but I did. I grabbed Nick's hand and put it to my belly and just cried.



Monday morning I felt like I had been hit by a truck and everything I did seemed slow motion. I felt like I did not blink once the entire day. I did not speak. I did not do much of anything. Just waited... I went to sleep on the empty, unpainted nursery floor by myself that night curled up with the soft blanket I bought to wrap my tiny baby boy in.



4 am - If I did get any amount of sleep I guess you can say this is when I woke up. I felt drugged. The thought ran through my head to just hide in the room and be still and quiet. Maybe no one would find me there.


5 am - Grabbed Beldon's blanket and held it all the way to the car. I felt like I had heavy chains attached to my ankles and I was dragging weight behind me. I tried not to think so I just stared ahead. It didn't work. The tears flowed...

5:30 am - I pictured what I wanted to say to him as he drove. "Please take me home. Please take us home". I did not want to go. I did not want to give up the baby in my belly. I wanted to panic. Maybe he's still alive! Maybe I was wrong and now I am going to be the one to stop his heart. We had been over it a million times in the last week. The longer I waited to say good-bye the harder I knew it was going to be. But that logic was nowhere to be found.

5:56 am - Arrival at the hospital. The drop off at the entrance. I wanted to run. I saw myself doing it. Felt the jerky movements as I fled from the awfulness. But there I stood feeling like a murderer. I sat down and waited for Nick to come thru the hospital doors trying not to look at the Labor sign on the wall. The sign I needed to walk to and do the unspeakable. I waited for someone to rescue me and no one ever came.

6:05 am - The lady at the front desk just looked at me. I couldn't make eye contact. Answered her questions... Wait! Did she really need to ask me what my EDD was?!?! That felt like a cruel and sick joke. I had a sign on my head that read "I'm here to kill my baby". Doesn't anyone see it?!

6:30 am - Dressed in my gown. I stood with Nick against the window and cried. I felt like if I got into bed I was giving them permission to take him. I couldn't do that. I waited to hear the nurse come in. Someone is going to have to strap me in if they want me to stay here. IV stick. Fluids. Wait.

7:15 am - Dr. Latchaw comes in to give me his best and says he'll be back later. "These things usually happen fast so I'm sorry if I'm not here when it happens." I wanted to tell him I changed my mind and that I just wanted to go home. But I shook my head and tried not to cry in front of him. Every time I did I swore he was on the verge of tears. I felt like I needed to be strong for both of us.

8 am - Heather, my main nurse, starts telling me everything I need to know. She sounded like an angel. "We will insert tablets called Cytotc right near the cervix. This will dialate you and start the labor. I have a tiny hat we can put on him if you wish. (Of course I wanted the hat. We didn't buy one because we knew he would be too tiny for anything bought in a store. I was thrilled.) We will do whatever you wish. We will take him as soon as he's out or we can hand him right to you." Take my baby away!? They must not have told you why I'm here! I WANT this baby. I'm not doing this because I don't want him. I'm doing this because I want him. I want to have him. To hold him in my arms. I don't want him to suffer in my tummy. He may not feel pain but the longer I let him stay and not develop right the more he will suffer and I will suffer later. I love my baby. I knew his heart beat no longer and still I felt like I was taking his sweet life. I was helpless. I couldn't help my baby. I couldn't take his illness away. And now I couldn't make his heart beat just once more. I told her I wished to hold him and she said they would just wash him off for me. I said ok, even though i was terrified they would leave with him and I'd never see him again. She left. I cried.

8:40 am - My first round of every 4 hour insertions. No turning back. Now we wait. Wait for the pain and my baby to arrive.

12:45 pm - Not feeling great but not in pain either. My second round.

3:10 pm - Ok that feels like pain! A dose of some relax meds and some pain meds. I didn't want to sleep but I was so tired and mentally drained. Just enough to take the edge off. The older nurse kept suggesting an epidural but I told her no. The pain meds would be enough. (I hoped.)

4:45 pm - Nick is about to leave to go take care of the cats and a much needed break. The nurse comes in to check me out before he leaves. "She feels completely soft but I'm not feeling the cervix. Don't go anywhere. This could happen in the next 40 minutes - 2 hours." (Not a chance. )Back in 10 minutes with order from the doctor for another round of Cytotec.

6:45 pm - Fighting thru the blur and the pain the doctor arrives to check me. He pushes up inside and it feels like the worst pain ever. The nurse trys to "help" and pushes down on my abdomen to help him feel my cervix. Are you trying to rip the baby out or push him into my throat?! I want to die. This isn't what I was expecting! I'm having contractions that feel like someone is pouring burning hot lava onto my uterus and you are doing what?! Dr, "The baby is so far up. I can't feel your cervix at all. Looks like this may go all night." I was told to take more pain meds as the older nurse pleaded with me to get the epidural. "It may help you relax and let the baby come down. I didn't want to feel anymore tired but after that... just give me the pain meds! I was told to call if I felt any pressure or anything like I had to have a bowel movement. How am I supposed to feel anything when I'm all doped up like this???? Sleep came for me then.

7:30 pm - Wake up. Sis is going home. If the baby drops she'll be right back. My mother goes to walk her out. Nick asks me if I'm hungry. I turned down dinner earlier. Sure. Food sounds good. I just have to pee. He stays to see me safely to the bathroom. I tell him I'll stay here until he gets back. He starts to clean up the room a bit, changes my bed pad that is now soaked with blood and fluid. I sit and think "if only the door had a lock I'd lock myself in and just stay here till I died". I am in no pain. Why can't I relax enough to pee???

7:40 pm - I start to pee. "Wait. What is that? That's not right. O God!" I look down and out comes my baby. I reach to catch him for fear he will go into the water. I hold him in my hand. I don't know if I want to scream or just be alone. I look at him with fuzzy eyes. What is wrong with my baby?! Where is his face??? I call softly for Nick but my voice must have been shaky. He opens the door and jolts at the site of me holding my bloody baby in my hand. He runs to snap on gloves and grab a towel as he yells for a nurse. Anybody! I stare at the ground. Unable to look at my baby. Why?! As I hand Nick the baby to put him in the towel I dive for something else. The placenta! I knew if I didn't grab it the baby would be yanked from his hands. I grab it and hand it to Nick too. The nurse runs in. He hands the baby to her and I sit. I couldn't cry. I couldn't move. What just happened??? Where is my baby?? The nurse cleans off my hand and I stare at the blood on the floor. She cleans me up and I'm taken back to bed. Nick calls my mom and sis and leaves a message for them to come back now.

How did I stay so calm? How did i know it was my baby? Why am I not crying?!

My mom and sis come back in and all I could say was "I didn't feel him." I repeated it over and over.



Born asleep at 7:40 pm on Feb 9, 2010 weighing a mere 1.2 ounces and a tiny 13 cm long.

The nurse came in with my baby. I was scared. Scared of seeing my own baby? I took him from the nurse as she told me to call her when I wanted her to take him back. Why would I want you to take him? And then I remembered... My baby's face was not there. His head was mishappen. What happened to my little boy? He was so thin and so much smaller than I had imagined. Not the tiny baby I expected. Nick explained to my mom and sis before they looked at him that we had lost him a day or so before and between my body and the contractions he was not the little baby they expected to see either. I kept telling Nick how sorry i was that I didn't know. That I didn't feel our baby. I was so mad at myself. So mad at my body for doing what it did to my baby.



I kept him with me for hours. Nick left to run some errands. After a while my mom and sis left too. My aunt who had arrived just a little while ago had left. When Nick returned I had the nurse take the baby I had longed to see and say good bye to. We said good bye to our little angel.



Nick made all the funeral plans the next day. We had a very short visit with him. No words were said. I broke down. I shouldn't be here! Why am I here?! I couldn't do anything but cry. I couldn't take the pictures I wanted to take to remember the day. I couldn't say the words I wanted to say to send him to his resting place. What kind of mother was I. And then Nick grabbed my hand and I understood... I was a grieving mother.


My baby was put into the ground on Feb 12, 2010 where he can lay peacefully with other angels. Mommy and Daddy love you so much little baby. Our Beldon.



Saturday, February 20, 2010

I need to but...

I know I need to update everyone on my delivery of Beldon but I just can't seem to get everything I want to say on screen. I need to get it out but every time I try it just doesn't seem like what I want to say. A few of you have heard the jist of the story and I wish I could get this out so the understanding would be better. I promise I am working very hard on this. Trust me it's drivin me crazy. I will do it soon. Promise. Thanks for understanding...

Wednesday, February 3, 2010

Results We've ALL been waiting for...

The baby does NOT have Trisomy 18. Baby does however have something a little more complicated. The diagnosis was Triploidy, where unlike Trisomy 18, the baby has an entire extra set of chromosomes instead of just #18. It is again, thank God, a random and very rare event. It is usually caused by 2 sperm fertilizing 1 egg, or in other rare instances the egg already contained a double set of chromosomes. From the characteristics the baby has it looks as if the more common, 2 sperm-1 egg, is likely to be what happened. Large head, severe growth abnormality and small placenta.

With a disorder like this one there is no compatiblity with life and although it is the most difficult decision I've ever had to make, aside from burying or cremating my husband, Nick and I are choosing to end the pregnancy and give birth to our baby. This is the best decision for us and will offer us the most closure. I get to labor and give birth to my sweet baby and daddy and I get to see her. I do not think it is fair to let the pregnancy continue however long it may and have anyone suffer more than they are already. I do not think it is fair to "see how long the baby will live outside of my womb." Even though the greater majority do not make full term and if they are born they are preterm and, more often than not, stillborn. I feel it is cruel and selfish of me to let this continue. My other option besides these 2 (do nothing or give birth) was to get a D&E (dilation and extraction) which is very invasive and can possibly harm me inside which puts me at risk for not being able to carry a baby ever. I do not want to take that risk nor do I feel comfortable with them forcefully taking my baby from me. I want her in one piece and in mommys arm where she is safe.

And although I am not basing my decisions on how anyone else may feel, I do hope everyone will try to understand that this is best for US. In this situation we feel it is the most humane and sentimental way to get through this horribly difficult time. I am scheduled for induction on Monday and will be at Wellington Regional. I will update everyone on my experience if they so wish to hear about it and hopefully will be able to take lots of photos which I will also leave to your discretion of viewing. We plan to choose a new name because so much has changed for this little angel. We will be told for sure if baby contained an extra X or Y chromosome and is girl or boy. We never did get a foolproof look. A new name I feel is appropriate for our baby as she has struggled to stay with us for so long. I plan on buying a lovely receiving blanket and have many plans to make for the arrival and birth of my tiny, angel baby.

Thank you all so much for being a part of this journey with me and for all the love and support you have given me. Most of whom we have only known for a short time and through computer or phone. You have made it possible for me to be as strong as I am and I pray all of you never have to experience anything like this. I also pray that each of you will be up for the next journey we will take when I am blessed to become pregnant again. Love and best wishes to all of you, Nicole.

Tuesday, February 2, 2010

Triploidy

Definition
Triploidy is a rare lethal chromosome abnormality caused by the presence of an entire extra set of chromosomes. A fetus with triploidy has 69 chromosomes, rather than 46. The majority of fetuses with triploidy are spontaneously miscarried during pregnancy. Those that survive until birth will have severe growth retardation and multiple birth defects. This condition is incompatible with life.
Description
Triploidy is a devastating condition caused by having a full extra set of chromosomes. This extra set of chromosomes causes a variety of serious birth defects, placental problems, and severe growth problems in a fetus. In fact, most pregnancies in which the fetus has triploidy end in a spontaneous miscarriage. Very few infants with triploidy survive to term. Of those that do, most are stillborn and those that are born alive usually die shortly after birth. Infants with this lethal condition are generally small due to severe intrauterine growth retardation (IUGR) and they have multiple birth defects, including facial abnormalities, such as cleft lip, heart defects, neural tube defects (spina bifida), and other serious birth defects. The exact pattern of abnormalities depends on whether the extra set of chromosomes was inherited from the mother or from the father. Unfortunately, there is nothing that can be done to treat or cure triploidy.
Genetic profile
Triploidy is a chromosomal disorder. Chromosomes are the structures that contain all of the body's genes (the basic unit of inheritance). Humans have 46 chromosomes in every cell of their body, with the exception of their sperm and eggs cells, which contain only 23 chromosomes. When a sperm and an egg unite at conception, the resulting fertilized egg will have 46 chromosomes: half from the mother and half from the father. This fertilized egg will continue to develop and grow into a fetus and, eventually, into a live-born infant with 46 chromosomes in every cell of their body.
Of these 46 chromosomes, 22 pairs (or 44 chromosomes) are called autosomes (or non-sex chromosomes) and the twenty-third pair is the sex chromosomes. Women have two X chromosome (46,XX) and men have an X and Y chromosome (46,XY). Fetuses with triploidy can be 69,XXX (female), 69,XXY (male), or 69,XYY (male). Twenty-three chromosomes (or one set) is referred to as a haploid set of chromosomes, 46 chromosomes (or two sets) is referred to as a diploid set of chromosomes, and 69 chromosomes (or three sets) is referred to a triploid set of chromosomes. A fetus with triploidy has three haploid sets of chromosomes.
Triploidy occurs in several different ways. The extra set of chromosomes can be inherited from the father (paternal inheritance) or they can be from the mother (maternal inheritance). The most common mechanism for triploidy is the fertilization of a single egg by two sperm. This results in a triploid egg with two sets of paternal chromosomes and one set of maternal chromosomes. This accounts for about 60% of cases of triploidy. The other mechanism is an error in cell division in which an egg cell ends up with 46 chromosomes instead of 23. This egg with 46 chromosomes is fertilized by a sperm with 23 chromosomes, resulting in a fertilized egg with 69 chromosomes, which then has two sets of maternal chromosomes and one set of paternal chromosomes. This mechanism is responsible for about 40% of cases of triploidy. The physical effects of triploidy differ depending on whether the extra set of chromosomes was inherited from the mother (maternally inherited) or from the father (paternally inherited).
In pregnancies in which the extra set of chromosomes is maternally inherited, the fetuses tend to be well-formed, with a small head (microcephaly). The placenta in these pregnancies is generally enlarged and cystic (filled with cysts). This type of placenta is often referred to as a hydati-form mole and the pregnancy as a whole may be referred to as a partial molar pregnancy. In pregnancies in which the extra set of chromosomes is paternally inherited, the fetuses have severe growth retardation, a large head, and a small, non-cystic placenta.
The physical birth defects seen in triploidy are variable. All fetuses will have some of these birth defects, but very few will have all of them. The birth defects most commonly seen are heart defects, cleft lip, neural tube defects, kidney malformation, abnormal genitalia (males), and defects in the abdominal wall. Regardless of the presence or absence of these birth defects, triploidy is incompatible with life.
Triploidy is a sporadic (or accidental) event. It is not caused by anything that a parent may or may not have done. Unlike some other chromosome abnormalities (trisomy 21 or Downs syndrome), triploidy is not associated with a mother's age. This means that there is not an increased risk for triploidy for an older mother to have a pregnancy. Because triploidy is an accidental event, there is no increased recurrence risk in future pregnancies. A woman who has had one triploid pregnancy is not at any increased risk to have a second one.
To read more about this condition visit the website below...
http://www.healthline.com/galecontent/triploidy

Monday, February 1, 2010

Amnio - Feb 1st 2010


Ok sorry guys. I haven't had good internet access for the longest time.
My appt today was awful. We got there really early to fill out paperwork and then 15 minutes after my appt time it was brought to my attn that the dr office never sent over my paperwork from last week when we made the appt. Nice huh? So after an hour and a half wait we were finally seen. I met with a genetic counselor. (Who would have thought??... that would have made too much sense the first time around right??) So we really liked this guy, nice as can be and INFORMATIVE! I was given new numbers for my Trisomy 18 risk. {Flashback - I was given a 1:70 risk factor for being Trisomy 18 positive.} I was given today a number of 1:10. My exact words were, "It would have been really nice to know that the numbers could change and that the bloodwork I went in for recently was to check for this exact change". So that was an axe to the heart right there. We were told that the amnio results could be rushed and T13, T18, T21 and XY could be fished (or rushed) so we could have answers in 2-3 days. Great! The rest of the testing would come back in 7-10 days. Also, they could do a simple blood test to check that my ability to attach chromosomes correctly was ok. It was explained to us but hell if I remember what he said. Just another test that should have been done in the last 3 years. Another good thing, We have less than 1% chance of this ever happening again!!
I was given the layout for the day, level II u/s then an amnio today if the AFV (amniotic fluid volume) was sufficent enough for the tap. Ummm, today?? Off to the u/s room where the tech played her picture pages in silence as we worried yet marveled over our perfect-appearing babe. The dr was brought in, no questions were asked and the conclusion, if I wanted to go ahead with the tap they found a pocket that could be used. Naturally my calmness about the tap this whole time turned to horrible anguish. I began to flip out. The overwhleming day, past few weeks, crappy drs appts and now "hi, we're gonna stick a giant needle thru your belly and possibly bring harm to your baby." I was not happy. I proceeded to cry and shake and Nick talked to me the entire time while I dug my nails deep into his forearm.
The procedure was horrible. I cannot describe the uncomfortable feeling and then the sharp pain when they actually pierce the sac. It felt like someone holding a water balloon as tight as they could inside of your belly and then piercing it with a dull knife. I wanted someone to literally just punch me and knock me out so i didn't have to feel anymore.
We were given instructions for the next couple days and things to look out for. Bleeding, leaking of fluid, cramping, etc. After he left the room Nick asked the nurse if being on the Lovenox would put me at increased risk for bleeding and she said she'd check with the dr. He came back only to bark at me why I had not told him I was on the Lovenox and my answer, amidst freaking out that something went horribly wrong was, "Isn't it on my paperwork?!". Nope. The 15 pages faxed over by my drs office and not one of them had me listed for Lovenox. F'ing wonderful! So of course I take all the blame being 'Mom' and 'how could I have forgotten to mark that on my sheet'. I was asked to sit in the room and wait; they'd be back in 15 to scan me for blood spots. Of course I cried the entire time and hated myself. Scan was fine and I was sent home. Halfway there I picked up the phone to call my mother and had a voicemail from the dr saying I needed to come back in, they forgot to do my blood draw. Wow, I may not be all there but you guys are supposed to be on top of this. So back in I go and was given a LIST of things to test for. Umm we were told only one test was to be done. Out she went and back in she came. Ok so the slew of tests are to be taken from the amnio and not the blood draw. Geesh! Glad we finally got that in order.
So, it looks like we are going to have to prepare to say goodbye to our little one. We will discuss options with the dr and if I am allowed to birth my baby that is the route I will choose to go. I cannot have them take her from me. I want to see her and hold her. She is mine. I need some kind of closure. I've never gotten any. I will post again when the results are in. Thanks for all the support. You girls have been so wonderful and positive. I hope you are willing to take the next journey with us when we continue our mission for baby #1. Love and best wishes to all my mommy friends.