prognosis update!

Yesterday we had an ultrasound and follow up appointment regarding William’s prognosis.  I was pretty anxious and nervous not sure what to expect.  It was fun to see Liam on the ultrasound and thankfully we saw a doctor in the practice that delivered Carson and that both Brian and I really like.  He said that even though William is breech (3 out of 3!), the cysts were gone and there was no other indication of any birth defects or problems leading our doctor to believe that Liam is perfectly healthy.  He said he was 99% certain that he was fine (a very audacious but assuring percentage) and that I should expect a normal pregnancy and healthy baby.  Basically, we are no more at risk for abnormalities then we were before we saw the cysts on his brain. 
We definitely shed a few tears of relief and joy yesterday.
In addition to the news about Liam, I was joking with this doctor about wishing he was delivering on the day I am scheduled to give birth to Liam.  Our doctor didn’t even ask us twice about why we didn’t want to other doctor (who is my LEAST fav in the practice.. if you are interested in reading Javier’s birth story as to why we do NOT like this other doctor click here) but asked when I was scheduled to deliver William, immediately called up his recep and changed his schedule for August to make sure he was the one in the delivery/operating room doing the job!  I couldn’t believe it and was so shocked!  He said he was honored that we asked him then gave me a HUG!  He was really great when he delivered Carson, calling him by name as they pulled him out and even letting Brian cut the cord with a c-section.  I think I teared up just with that news and I really hope it actually comes to fruition.  I was joking with Brian last night that it reminded me of the scene in “Knocked up” when the main characters decided on a doctor and the doctor guarantee’s them he will be there, claiming never takes vacations and is over committed to his job.  All the while, they scan his office with pictures of the doctor on various vacations with family and friends.  It’s funny if you haven’t seen it and in the end he isn’t there to deliver their baby. 
None the less, we are very relieved and excited.  We know so many have been praying for us and have been so supportive since we found out the news of Liam and we are privileged to be surrounded by everyone who has.  Thank you for all who have given encouraging words, phone calls etc.  I will say I am still a little more anxious to hold him in my arms, see and feel that he is healthy and strong, but I have 3 more months of his growing before that takes place.
Here is a pic from yesterday.  Liam is 2 weeks ahead of schedule in his development, is now in the 63 percentile of his growth and weighs 1 lb 9 oz.  When the tech first started the ultrasound, William was in the “frank” breech position, meaning his legs were strait up putting his feet by his ears by my rib cage.  He moved his legs down by the end of the ultrasound, but I was so glad she got a shot of his feet by his head because it was so cute.  When I was pregnant with Javier, and we knew he was breech, my doctor said she would put money that if I had 5 more babies, they would all be breech.  It’s so rare for a baby to stay breech to term (less than 3% I think), and the fact that every baby I carry is breech is an indication that something in my uterus or pelvis is preventing these guys from turning like they should… which is why I’m glad I didn’t let them manipulate either of my boys to try to get them to turn so I could deliver naturally, as badly as I wanted that.  I also have to get my RH- shot at my next appointment and assuming I passed my glucose test, hopefully I’m done with that as well.
Only about 3 months left to meet our baby boy.  As scared as I am on how I am going to manage 3 little boys, I’m so excited about my family.  I grew up in so much abuse, pain, neglect, brokenness and dysfunction, that this whole living in a peaceful home with my husband and children is a gift I never thought I would have.. ever.  This past year particularly has been such a year of healing and growth with my family relationships and my relationship with God/faith it has definitely changed my life. 

This experience has def taught me how to love others through difficult, similar circumstances, and for that I’m thankful.  I know I’ve mentioned it before, but we are aware that others have to deal with more difficult situations, and it is heartbreaking.  I don’t pretend to understand the pain, I’m so sad for them and pray that God will give them support, love, joy and knowledge that surpasses expectation. 
In a few weeks (on mother’s day weekend) we have a 3/4D ultrasound scheduled and I will definitely post pics of that.  Thank you again for loving us.  We will keep you posted as things progress!

ultrasound

Briefly..
Tomorrow at 2:30 I have an ultrasound scheduled to check on Liam's condition and further prognosis.  We will once again see his anatomy and pray everything looks good so that the cysts on his brain remain isolated which would be more conclusive to a normal birth. 
Also, they will be checking my placenta which at the last ultrasound was potentially on top of my cervix to make sure it has moved up as my uterus as expanded.  Honestly, the same thing happened with my other two boys and it grew up from my cervix to lead to a normal pregnancy.  I'm not so worried about that, however it would totally suck to be on bed rest for my 3rd trimester if it hasn't. 
In addition, I will have my glucose testing... and that is just yucky...
So it's a big day.  Please pray for Brian and I as we are excited to once again see our little William and pray he continues to grow as he should.

research

After Brian and I had a tearful discussion a few nights ago, we finally decided to share this blog with his extended family.  It was something we had to pray and work through as it would make our worries, concerns and fears so fresh again in addition to opening us up for criticism from anyone who could be offended by our sharing.   It’s been a hard to process the past few days.  If this is the first you have heard about our little William, at our 20 week ultrasound, he was diagnosed with having two Choroid Plexus Cysts on his brain.  The short of it is the cysts themselves are normally not harmful, but they are a soft marker to certain chromosome abnormalities ie Down Syndrome or Edwards Syndrome.   I gotta say, word travels fast.  In 48 hours, from sharing this with a hand full of people, I had over 400 hits on this blog which is crazy… and kind of leads to more anxiety for judgment.  Thankfully, we received some very encouraging emails or messages from his cousins and aunt.  I also have gotten so many others who have sent emails or notes of concern.  It’s been somewhat of a relief.  Thank you to those who have been so kind to us regarding the situation.  It’s refreshing to have a few “safe” places to voice our concerns and tears knowing we will be loved.  At this point, it is hardly a secret and since Brian's mom and other people we wanted to be the first to tell now know, we don’t care who knows. 
In my relationship with Brian, he is the data guy.  Whenever there is an ailment or health concern, he is all over the internet or reading books educating himself as much as possible.  Depending on the situation, I am less likely as I worry so much more… even if it’s about politics or the climate, I’ll lose sleep.  But since it has been all over the news that Rick Santorum’s daughter has Trisomy 18 (T18) or Edwards Syndrome, it really sparked my curiosity to read a little about it since I had never heard of it till I found out our son was at risk.  It’s horrible.  On every web site I looked at, CPC pictures and information was listed as a symptom of Edwards Syndrome.  In fact, it was associated more with T18 then Down syndrome, which to be honest would be a better situation then Edwards Syndrome. It was very discouraging and honestly I think I almost hyperventilated.  Also, I read that it is almost always standard practice that any ultrasound with a CPC diagnosis will immediately get a level 2 ultrasound, which our doctor didn’t order.  There has been one other woman that I know who’s son was diagnosed with CPC and had high level ultrasounds almost every 2 weeks in addition to other tests to ensure there was no other concern.  Our doctor isn’t hardly doing anything… it’s kind of frustrating.  The doctor in the practice I go to that I love is out on personal leave, so I have been seeing this other woman that is ok… but she hasn’t even had a baby so the credibility of her very black and white, legalistic view point kind of lacks a bed side manor in my opinion.  She even laughed at me discrediting my words when I mentioned I felt William’s flutters of movement in my first trimester telling me that it was just gas and I probably didn’t actual feel him move till well into my second trimester.  Not to be a total bitch, but this is my third baby, and I might not have a medical degree, but I know what it feels like when my baby’s kick, roll over and move in my body.  I wanted to walk out of the office and tell her to call me after she has given birth a few times, then we’ll do business…  Thankfully, she is leaving in May, so perhaps my favorite doctor will come back from leave or they will replace her with another woman who is just as great. 
Anyway, I have had a hard time with depression and anxiety for a while now.  Now I’m questioning how much I should be the annoying patient to push for further treatment.  In discussion last night, my very level headed husband asked what good it would do though.  Whether it did, did not confirm, or just left us with more questions regarding Liam’s prognosis, we still weren’t going to terminate his sweet life, which amazingly enough I have about 10 more days to do in the state of Ohio.  But I guess I just want to know.. which won’t change the concern, pain, how much I cry or most important, how much I love him. 
So if you are reading this for the first time, I hope us expressing our concerns is not offensive.  I admit I’m still leery about going around people who haven’t acknowledged they know wondering what they are thinking.  The entire situation is difficult and awkward.  I think I kind of liked it that no one hardly knew for a while because I feel like I don’t know how to respond now just as I think maybe others don’t know how to respond to me.  I think it’s easier to be a recluse and stay home with my boys because I don’t know how to process it all.  I also don’t want to cry in front of others so I don’t make them feel uncomfortable and well as myself, which I know I could happen. 
So this is where I’m at right now.  I don’t have much to say except I’m thankful for the friends and family who have been so great. 
I’m sure I’ll write again soon or at least after our next ultrasound.  If you are interested in reading our first blog regarding the diagnosis, click here.

day to day grind

I only have 2 more weeks till my next ultrasound.  I don’t have anything exciting to report, and we are anticipating the cysts will be gone (Lord willing) at the next ultrasound, if not by 32 weeks.  It will be a waiting game after that until William’s birth to know if there are any chromosomal abnormalities that I have discussing in my previous blogs. 

I seem to have moved on to the day to day grind.  I still don’t like being around people I don’t know or talking about my pregnancy with strangers as it is just a reminder there is something wrong.  I am very distracted though.  I felt like a piece of poo when I completely forgot about my 4 year olds Easter egg hunt at his school.  Thankful it was only the last 10 minutes of class and he was really scattered by candy all over the ground, so I don’t think he noticed. I feel overwhelmed so easy right now… and to be honest life hasn’t really been a walk in the park for many reason’s lately, Liam’s prognosis just being one of the difficult situations in life to deal with. 

Although there hasn’t this dramatic, crazy flow of strangers flocking to our emotional needs, God has been gracious in providing us with amazing friends that seem to have a compassion that has meet our expectations by far.  I still don’t feel completely ready to tell all those that are close to us as it is enough for us to handle let alone trying to help others understand the situation and help them work emotionally through what’s going on.  To some it might not seem like a big deal as they are working through other aches and pains that may appear worse, so I am content with the support that has rallied around us. 

Last Thursday some amazing women from my bible study got together to hang out.  These women are great and I feel privileged to be included in such a social outing.  Although I didn’t go searching for it, they spent some time at the end of the evening to pray for Brian, William and I.  I was grateful for these women, and for the others who have done the same prior to that evening. 

I think anyone who has given birth knows it is stressful to have to ask others to help when the baby comes.  Finding people that will love and care for my boys and help me through another C-section is challenging.  It’s hard to ask so much of others and we know we are not entitled in any way for people to help us for free or at all.  We have some friends and family who are wonderful and have even said they feel “honored” we would ask them to help us during such a time.  And we are also grateful for a few cute college girls we are close to who are willing move in with us to help us while I am in the hospital for 4 days.  The time before the delivery is going to be tense for us and we won’t know what to expect with William till he is here.  I still have 16+ weeks to go which seems like an eternity, but I know it will fly by. 

Next month, I’m hoping to have a college girlfriend of mine come over to talk to us a little about Down syndrome as her 18 month old son was diagnosed with in 24 hours of his birth.  She has been super supportive in offering emails and for us to call her.  Although we don’t know for sure if Liam has downs, it will be helpful to hear what she has to say and to meet her precious baby boy.  If anything, it will be a learning experience for us on how to better love those who have family or loved ones with down syndrome.  I will say, I am amazed at this woman’s humility.  In an email to us offering for her and her husband to come over to spend some time with us, she even suggested to keep her sweet son back as she did not want to make the situation uncomfortable or painful… I want to be that person who desires to serve and love that I could set my own needs for validation etc aside.  Of course we want them to bring him over and honestly I can’t wait to meet him and kiss his little cheeks. 

Thanks again for giving me the freedom to express my feelings freely on such a forum.  I know that people have gone through much worse in life, have had grief and pain that I cannot comprehend, and are still trying to recover and for that my heart aches for you.  My prayer is that others rally around you, love you and let you grieve as you need as people have been gracious to us in doing so. 
That’s all for today. 

Defeated

This past weekend we went to visit my in laws in Michigan.  We love them so much and it is always a good time.  While we were there we celebrated my oldest son's 4th birthday.  My mom had made him these amazing motorcycle curtains for his big boy room that we are so excited about.  His room theme will be classic motorcycles, cars etc.  So to continue to theme, Bill and Cher got Carson this awesome motorcycle lamp.  As we were chatting, we decided to go ahead and order a fun comforter to match.  They really decked out his room for us.  I'm pretty sure we are more excited about it then Carson is:)..
My point is while I was on line looking for a comforter for Carson, I saw on ebay there was a really cute infant motorcycle quilt.  I perked up and mentioned it to Brian, but quickly remembered the situation, and very sadly found myself hesitating in buying him anything.  The joy of the celebration for Carson was quickly squashed for me with the thoughts of something happening to William.  I went back and forth in just audaciously assuming Liam will be fine to waiting "just in case"..  it was a horrible almost debilitating moment of fear and grief.
This past week was by far one of the worst/hardest since I have been married.  While we were in the waiting room waiting to have our ultrasound and in the doctors office, Brian's mom was texting Brian with the news that she was experiencing chest pains and was en route to the hospital.  She was released the next day to follow up on her primary care provider. In addition my niece was in the hospital for another surgery.  She was born with a very rare blood disorder that has caused many difficulties pertaining to her health.
It's been tough.  I feel like I have hardly been able to sort through feelings and facts regarding William while trying to process Brian's mothers hospital stay.  It has been challenging.  I had a brief moment of desperation in trying to process everything, feeling so trapped that I almost left for Indy to visit my bff, but that needed to go on hold because of our trip to Michigan this weekend followed by my 4 year old getting very ill.  I'm in desperate need of a break.
So I'm waiting for the rest of us to get sick since Carson has had the flu, however praying somehow it passes the rest of us by.  I feel somewhat defeated right now and very down.  I really hope we see some positive change in relating to a few close to us and working through the rest of where our life is.  None the less, we are blessed to have our children in addition to how much of a gift Brian and I are to each other. 
This is all I have for now.

Above the fray

I’m so glad I started this little blog.  Brian and I have gotten so much encouragement from friends and are grateful.  The past few days we have been up and down about it.  We talk about the likely hood that our son will be fine, however can’t ignore the situation.  Whenever I say it out loud it sounds so alarming.. in fact I don’t even want to type it out because I hate dwelling on it, but then come back down to earth thinking about probability regarding the situation. 

When we decided to have a 3^rd baby, our doctor ran us through the ringer drawing graphs, writing out statistics and going over the possibilities of chromosomal abnormalities because of my age, so I feel like this put salt in an already fearful wound.  The two mom’s I know that have babies with Down syndrome are amazing and have offered support and even to come talk to us if we want.  They for sure know about the markers on infants to look for and would more than anyone would be able to educate us, give us a briefing of how to set our expectations and how to love our son if that would be the case.  It’s the waiting part that is hard.   

Last night when Brian and I were chatting a bit, we talked about the delivery for a few minutes.  I found myself fighting back the tears when I asked him to tell me as soon as he laid eyes on him if Liam is ok.  I know they might not be able to tell immediately, however I am anxious to hear him cry and for Brian to tell me he looks good.  I will not be able to hold him for at least the first 20-25 minutes or so because I have to have a c-section.  It will be a very long 20 minutes of life.

I think after we get through the initial grief of a squeaky clean pregnancy, and work through the fear of the “what if’s”, we will be able to go on as usual till he comes.  I still have 19 more weeks to go, so my guess is it will be all over the place.  Today when I went shopping with the boys, one of the shopping clerks asked me if I was having another boy and I said yes with a smile.  She then asked if we were hoping for a girl and I told her we didn’t care either way to which she replied, “it doesn’t matter as long as the baby is healthy..”  This kind woman has no idea who I am or where I am in my life, but was trying to make me feel validated in that brief moment of conversation.. but I waited till I got in the car with my boys to tear up.  How much I enjoy this pregnancy, my life, or find joy in the next 4 months (or longer), really depend on me.  I think so many people don’t know what to say, although the emails and phone calls we have received have been amazing.  But I am reminded every minute of my life of my son because of the physical evidence.  He moves and constantly reminds me he is there.  Not only that, but I am BIG!  It is very obvious that I am pregnant and most people are excited to share that.  I hate putting on a show or being fake, but after my short shopping excursion today, I have quickly realized that as much as a simple innocent comment my hurt, I don’t want to show animosity toward these people.  I need to rise above the fray in moments that I don’t even want to and limit my transparency to when it is appropriate… and I can’t believe I’m saying that being the most raw, “in your face” kind of person I know.  I don’t think I will always succeed, however I believe I can grow to find a steady, at least when I need to. 

My son has two cysts on his brain which could mean everything or nothing.  I hate this and will be happy when it is over. 

One of our good friend (who is a physician) pointed out yesterday that even though they are obligated, it stinks that the doctor told us because it is non value added information.  We had already communicated that we were not interested in doing any type of genetic testing or abortion, so the fact that they told us about this really gave unnecessary worry.  I’m not by any means discrediting our doctor because I know she is good and was doing what was obligated of her, but because we are not doing anything to confirm either way if there is a genetic birth defect with baby William, it’s really compromised the situation for us…ugh

So this is all I have for today.  I know there are people who have gone through much worse, and for that I am so sorry.  This experience is definitely educational in how I can better love others in the future.  Although every person is different with various emotional needs and expectations, this type of grief, worry and pain is in a category of its own. 

Thank you again for letting me vent my fears, grief and frustration.  This is also a place where my husband, Brian might choose to do the same.  Either way we will keep you posted on our little boys life and progress.

diagnosis

Because I am desperate to talk about this, however need to use discretion as we are not ready to let the world know, I have decided to start a private blog regarding the news of our son Liam.  I know many people who are super private about their lives; however I work through pain, grief, frustration, joy etc through community. I do not want this to be posted on any open forum and will not be posting this on facebook.  If you are interested in reading as I post about our son, our fears, concerns etc, let me know and I send you links as I write.

For those we haven’t shared, yesterday Brian and I had our anatomy ultrasound for our unborn son due on August 8^th.  I’ve said it before but no matter how many kids we have, or how many times we see them before they enter the world, it never gets old.  I was wiping tears away as we watched him squirm around, move his little fingers and toes, drink, stretch his little legs out and just kept thinking how much I couldn’t wait to hold him.  The ultrasound tech said he was in the 73 percentile of his height and weight and he was at 21 weeks of development (I was 19 weeks 5 days).  He is big and he feels like it compared to my other two boys.

From the naked eye, even though I’ve done this 3 times and by no means am a pro, everything looked fine.  The tech took careful pictures of his hands, feet, kidneys, brain etc.. but it was nothing out of the ordinary it seemed.

When the doctor looked at the report, I think she might as well shot me when she told us our baby has two choroid plexus cysts on his brain.  I think when I heard the words “cysts on brain”, I immediately shut down.  She could have told me at that point that we won the jack pot and I don’t think I would have heard her. 

Brian at one point contemplated not going to this ultrasound because we had already gone to one and we have another we will be going with my in laws Bill and Cher, so he was trying to think of ways to save vacation for when Liam is born.  I told him I wanted him to go since it was a clinical ultrasound and just in case, having him there would be important.  I’m so glad he did.

Thankfully, Brian was there because I literally couldn’t even think strait enough to ask a question I was thinking of without bursting into tears.  I’m sure she thought she was talking to a wall at that point, but my husband is all about data, and he was able to clearly absorb what she was saying.

After a few minutes in the car to panic, we called my girlfriend who is a ER doctor at Children’s Hospital for feedback.  I had everything the doctor said completely jumbled, so Brian did the talking to her to get her feedback on the severity of what was going on. 

It turns out these cysts are more common than we would have thought.  Many babies have them between 16-32 weeks of pregnancy and usually resolve themselves before birth.  Liam did not have any spinal fluid buildup on his brain and looking back, our doctor seemed very calm about the situation. So much so that she didn’t even order a level 2 ultrasound but just scheduled me out for an ultrasound in 4 weeks to check the progress.  Our doctor friend pointed out that the latest a woman can get an abortion in the state of OH is 24 weeks and incidentally, my next ultrasound is scheduled at 24 weeks gestation.  If the doctor really thought in the back of her mind that Liam was at great risk, she would have immediately ordered a number of tests to check on his condition, chromosome abnormalities etc so to give us, by law, the option of terminating Liam’s life prior to the cutoff date.  To those who are pro abortion, that might sound great, but we disagree. Regardless of what the doctor would have said, we would not have chosen to end Liam’s life prematurely.  The good thing about hearing that was the reassurance that if the doctor is concerned about saving her tail, and really thought I needed the option of abortion, she would have acted, but she didn’t.

So this left us with very little information about what a CPC is, but a reassurance from our doctor friend that she thinks he is going to be ok. 

So we chose to read some literature to understand what this meant for Liam, us, our family etc. and this is what we read.

A large majority of the time, babies with CPC are born totally fine.  They are healthy and lead normal lives.  There are two chromosomal conditions however that are indicative to having CPC as a symptom. 

#1- Down syndrome.  Because we choose not to do amniocentesis at the beginning of the pregnancy, we will not know for sure, just like most women, if Liam has down syndrome anyway, regardless of this new information.  Does this cause me to worry?  Yes.  Please understand that I know people who have children/siblings with down syndrome and I don’t know firsthand, but hear how wonderful these children are.  But the reality is having a child with special needs would require completely reconsidering our life expectations.  It’s something we would have to grieve, yet find a tremendous amount of joy that God would give us such a gift as our little boy.  It would be challenging and we would have to learn quickly as much as we could since we personally haven’t been exposed to that type of special need.  But we would adore him and he would be our son.  And.. we would need so much support and love.

#2 Trisomy 18 (T18) or Edwards Syndrome.  This is very alarming.  I will start by saying that as much as I dread it, and it will linger in the back of my mind till I see Liam, he had no other markers or indicators of this abnormality.  To give a direct quote from Wikapedia, “The syndrome has a very low rate of survival, resulting from heart abnormalities, kidney malformations, and other internal organ disorders.”  We also read that that if there is only one marker on a fetus, it does not mean the baby has T18, but usually there are 2 or more that would indicate Edwards Syndrome.  Thankfully, Liam only has the cysts on his brain, and although the doctor said his abdomen is larger and a little out of proportion to his body, she was not concerned.   After Brian and I read this, we remembered how thorough the tech was about checking these markers after she saw Liam’s brain.  His hands, feet, kidneys, heart etc all looked normal.  We really have no reason to believe Liam has T18, but since he has one of the markers, we wanted to make sure we adequately researched the abnormality.

Both of these abnormalities generally come with a woman over the age of 35.  Incidentally, Liam is scheduled to be born on my 35^th birthday.  When we decided to grow our family once more, I knew there was risk of aging abnormalities.  I pray that Liam does not suffer any consequences of our decision prior to even entering the world.  In a way, I kind of feel like this is my fault.. and it's really hard to wrap my mind around.

When I was sitting at the kitchen table yesterday looking at baby Williams name on our playroom wall, I contemplated through tears if it was too audacious to write it and celebrate his little life prior to his birth.  But he is still our son even if he can’t sustain his own life at this point, and he is not disposable to us.  No matter what happens, we want to celebrate his life as we have our other children. 

So today I feel like a roller coaster.  Rationally and statistically, I know the odds are good that he will be born fine, but if you are a mother, I know you understand a mothers concern and love for her children can be debilitating.  I feel kind like I don’t even want to be around people who don’t know because then I know in the back of my mind if I talk anything about Liam, I will want to burst into tears with fear. 

The day we go into the hospital and I deliver our son will be the most nerve racking of all three births.  I need to see him and hold him to know he is ok.  I pray over the next 4 months we can relax and find joy in our lives.  I am aware of what is biblical truth, however I am human and my guess is Brian and I will have moments of struggle.  We have two healthy boys that we love so much and are a gift.  Regardless, Liam will be just as much of a gift. 

Please pray and support for our family as we continue this journey.