Sunday, March 31, 2013

23 weeks - Dr Jekyll/ Mr Hyde



23 weeks:
 I have lots of stomach aches and laziness ;) I.need.spring! I am gaining weight too so some walks would be nice!
Jack's size and development this week:
He is over a foot long and over a pound. There is lots of movement and noises from the outside world are becoming familiar to him. Oh! And am I ever showing now! Whew - big belly.

My newest every day convos:
I spoke with the NICU at my local hospital about stillbirth details and what they do for the babes and with them and details about funeral homes and mommentos and blah blah blah. She also felt the need to say to me, "You KNOW your son is not going to kindergarten. You know he is simply not compatible with life." It was just all a bunch of ick that I didn't want to hear and am sure there are ways around some of those comments. She stretched it out to a 45 minute conversation that I wanted to end quickly. Eh. Convo done. Check.

Dr Jekyll/ Mr Hyde:
Up down up down up down. Back and forth back and forth. One moment I feel numb and fine. Then the next second I feel sad, scared, and weepy. Back and forth. I've noticed that I do this with my willingness in discussion as well. Some times I just want to talk about Jack so bad and reach out that I find myself explaining things to random strangers and then other times I don't even want to talk to my husband about it all. Poor world who has to deal with me.

More joy, more sorrow?
I've noticed that I find myself doing fun things with my kids with tears in my eyes. Every moment is that much more precious when I realize that Jack is with us now, but that I may never get to do these things with him. I took Layla to Disney Ice. She had so much excitement and joy and I loved that, but it made me so sad to realize that we will probably never get to take baby jack to do things like that. I will not get to see him jump up and down when his favorite act comes skating out. So much loss realized before it is even lost. Will I spend every happy moment for the rest of my life with a bit of sorrow at the son who isn't there with us? Im sure, Im sure we will...

The Babes:
Layla has totally stopped napping. I find I really need that time alone and am struggling with her being alone playing or watching a show. I know she needs it and is fine and doesn't need to be entertained every moment, but wish I could just be super mom and in there working every moment on her numbers/letters with her, playing games, etc.  Stinkin mom guilt.
Keith seems to have finally popped through some molars and is happier. He is such a sweet pea. He sleeps and naps well. He eats well too. He will just play and explore all around on his own. He has really started communicating with others and expressing himself. He has 40 plus words and can follow instructions like a champ. I have been surprised he is so verbal so early being the younger sibling of a yacker. He also seems to have more interest in the potty so perhaps this spring/summer I will put some effort into that.

The Babes and Jack:
My kids don't know anything about Jack's health. (Speaking mostly of my 3 year old.) We have decided that since we have no clue where this road is taking us that we don't want to string her around for what could be many months. She talks about baby Jack often. She is the best big sister. So nurturing and motherly. Her heart will break. Im very worried about her in this. I know God will protect her, but I don't know if I can handle Layla's heartbreak on top of my own.

Monday, March 25, 2013

22 weeks - the newest details and plans...

~J, K, L
Jack is my sugar baber sweetie pie and I can't BELIEVE the Lord gave him to me after He has already blessed me with Layla and Keith. I have noticed that God set aside a whole other side of my heart to care for my children. It is like I can love and feel and think of Jack constantly, but yet am able to continue on with my sweet toddlers as well. He has made it possible for me to feed them, bathe them, dress them, play with them, and praise the Lord, even laugh with them. I also pray that I am able to somewhat be a good wife, daughter, and friend right now too, but am sure my insanity sneaks through. ;) As long and my babers are happy and loved. I have been really focusing on Jack's presence with me. There will be a time to grieve, but now (today at least at this moment) is a time to praise the Lord for him.

~The newest plans...
1. I met with the heads and other moms at a beautiful place in KC called Alexandra's House. They help fill in the gaps for families in our situation. Perhaps I will blog about all of my thoughts of that experience once I have it settled inside. We plan to meet with them again.
2. Right now we have a 3D/4D HD UltraSound scheduled for 26 weeks with a beautiful woman from Perinatal Imagining that does the U/S with the families from Alexandra's House. I am praying we make it to that U/S, but know in the end God knows what is best.
3. Then, if we make it to 28-30 weeks we have appointments scheduled with Mercy for a closer look at Jack's heart and brain and a meeting with the neonatologist. Mercy has agreed to test Jack further even WITH his diagnosis because they know he has lots of possibilities so we appreciate that hope and understanding from them.
4. Otherwise we just wait. We wait to see where baby boy takes us. If we make it to full term and Jack is here with us then there are loads of decisions to be made and so we are researching lots now to be prepared for all of those possibilities. I want to never have any regrets so I am trying so hard to understand everything.

And then I lost it

~ 22 weeks - Jack moves a ton between 9-11pm. I enjoy that. I randomly threw up - not like me - no clue why. Each day is long, but God gives us the peace to keep going. I was doing so well I thought, and then a depression (or something) set in . . .

(WARNING: This is a grumpy post in a time of grieving. Just feelings that I allow myself to have from time to time. Don't worry, I always put it back together. I DO forever know the blessing of my babes and my family and friends and most importantly of my Lord, but sometimes I have a bit of a pity party. So, this may not be for just anyone to read...)

My heart is so very broken. There are so many people who are pregnant, like me with beautiful amazing blessings, like me. They are getting nurseries prepped and clothes washed. Not like me. I have nothing like that to do. I have no plans to make other than doctor and hospital appointments. And research, research, research. I have packed my essentials for our hospital bag, but plan to add mementos this week. Something for my kids and us. Along with Jack's outfit and a blankie for him. I know there is a very small chance Jack will come home, but I feel like I'd be setting myself up for heartbreak if I prepare my home for that. I already have to look every day at things around my home that I did pre 19 weeks and don't need things to 'disassmble' later. So I shall prepare hospital items and God willing if we need more things ready we can quickly do it after he is born.

I feel like I look around and am shocked that people keep going about their business. Like they have yet to notice the world stopped spinning. Sometimes my loved ones will ask if my sadness at that moment is due to my worries about Jack... I now wonder, What on earth else is there to be sad about? Is sad even a term that can encompass anything else ever again? On FB someone wrote all about how they're "sad" the store didn't have the home goods item they desired. They said they were 'SO SAD'. Really? Cynical a little Rachel? Yes. I am. Today at least. I am embarrassed, but a good friend told me to feel what I feel and this is what I feel. Perhaps it'll allow some other mom some day to know she is somewhat normal too. I have always had great perspective. I get that from my father. Life is hard, but someone else always has it harder. I know this. I know there are SO many people out there who have it worse than I am I feel for them. But today I feel a little for me too. Socrates once said that if all the troubles of the world were laid in a huge pile and each person had to come and take an equal portion - most people would be pleased just to take back their own original troubles and go. This is a hard life. Yes, it is a glorious life, but just different than i once thought it was. It looks different to me now. Am I fat? I don't know. I no longer notice. Is my home clean? Don't know. Is that car in front of my driving too slow. Don't know. Nothing is the same to me any more. My life has already been changed and will change more as the days and months go on.
I can't breathe. I am always forever always every day every moment every second all of eternity thinking dreaming wondering wishing praying thinking every every every single moment about my baby about our future together about the possibilities. I am consumed.


Side Note: because it can't go without being said: of course anyone can be 'sad' about anything. I wish them no harm from these comments, I am simply sharing my heart's thoughts at that moment. I use all sorts of synonyms a for sad and will continue to use them for all sorts of reasons. These are just foreign thoughts for me. Also, I wish all my beautiful prego loves the best, but it doesn't mean that deep down the reminders don't cause me tears. Do not sensor yourselves around me. I want and need to experience your joys. You have experienced mine. We are here for one another in highs and lows. 

The Lord's Peace

~Weeks 20-21
On Monday, March 11th the genetic counselor called to say that Jack's amnio came back with his having FULL TRISOMY 13. A fatal diagnosis. Part of me felt relieved to have an answer. I wasn't expecting sunshine and flowers. I just needed to know. I immediately began researching. The genetic counselor and my OB said there was no need to have an echocardio done on him at 26 weeks like we had planned because there is no hope. Hum...

Well I found immediate support from other Trisomy moms with tons of hope, but didn't let their specific situation get my hopes up - just educate me on other options than the ones given to me ("none"). Our family and friends began pouring their hearts out to our great Lord and OH MY GOSH did he ever send His peace down on me. I was sane in an insane time. I was able to read and talk and explain and socialize when I otherwise would've thought that not possible. Where was this coming from? From God is the only possibility. Because I will tell you something... no mother could have a natural peace when she is told her son is alive in her, but may die at any moment and then she will have to go through labor and delivery to get him out and hold him in her arms, OR perhaps, they said, he will make it four more months to full term and THEN will die in your arms. Who can fathom such horridness!? I once said to a friend that I think the worst thing in the world would be a stillbirth. I said there is no way that I could ever EVER do that. No way that I could go through labor and delivery just to be handed a baby who I don't get to take home with me. Who I don't get to raise. Well... looky here. Look where I am. And guess what... God is so good. He is with me. He is with my sweet sweet forever loving husband. I am not ready. I will never be ready. I will never be the same. But I am here.

I think.

Our Level II U/S at Hospital

(These are notes straight from my phone journal that day)

March 7th - it became worse...
Our baby boy is so special and so amazing. Today we discovered that he has several special parts. Jack's heart didn't fully develop on the left side. His sweet baby brain has parts that didn't develop at all and others that haven't developed properly. His body is full and strong and just the right size for twenty weeks. We have hearts full of dreams for him. We love him. We feel super low, pretty much non existent hope for his future here with us. We do not know what The Lord plans or when, but doctors feel he will not make it to birth. I just want him not to hurt. Actually I just want him with me forever, but... He is still just kick kicking in there. I am just waiting for horror. He loves us. We love him. He is so special. I'm so scared for an early delivery where he has already gone to be with The Lord. I'm even more scared for an early delivery where he dyes in my arms. I can't do this. Oh Lord why?! Why give him to me and then take him away?! Why let me know just to wait and wait for days or months. No clue. No idea what to do. Layla is going to be so sad. She really loves babies and was pumped to be a big sis again. My family will never be the same without him. I felt something was wrong from the beginning, but I didn't think this.

The details looking back -
Patrick and I arrived at the hospital and first met with a genetic counselor for a long time. She went over our family history and explained all kinds of genetic disorders to us. We still felt quite a bit of hope at this point. After that we went in for an U/S. This time the sonographer walked us through some things that she saw. She did see heart issues - I was hoping it would show differently. Then she laid the video over his brain and said, "This is the top of his brain. Most babies have two parts of the brain - split right down the middle - see how he does not?" SAY WHAT?? Ok, so I know that heart surgeries are possible. Though I don't know what his heart issues specifically is, but saying to me that his brain did not divide? That can't be ok in any way. :*( The tech left and got the perinatologist. She was also super nice. We all went to a different U/S room where magically the genetic specialist was grimly awaiting our arrival. The doctor walked us through Jack's heart and brain and our world slowed and then stopped. I couldn't speak for Patrick asked our questions for us. Downs affects the 21st Chromo and one thing we wanted to know is what are the chances that Jack could "just have trisomy 21"? Not likely. It seems that he has hypoplastic left heart syndrome - where the left side of his heart did not develop. This is not an issue in the womb, but after. His brain is called Holoprosencephaly and the doctor showed us how it did not split into two sides and also said that the cerebellum didn't develop at all.

I am a planner. A researcher. I had to know more. Right then we decided to get an amnio done so we could look closer at Jack's chromosomes. It hurt worse than I expected. They said they'd call on the 11th with news of the 21, 18, 13, X, and Y chromosomes. Then later that next week the full report would be finished on all of his chromosomes. We left the hospital together leaving one car there, told my momma to take the kids to her house for two days since I needed to be on rest after my amnio, and we went home and wept together for two days.

The Heartache of Our First UltraSound

At 19 weeks 3 days - March 6, 2012 - Patrick, Layla, Keith, and myself reported to my OB for our midway UltraSound (U/S). I had been so looking forward to this apt, first because I hate surprises and the unknown and I needed to know the gender, and second because I had an uneasy feeling this whole pregnancy and needed to see the baby was all there and ok. The kids were a bit of  mess seeing how it was lunch time, but daddy did a great job at attempting to entertain. The tech was new to us. It wasn't long into the apt that she told us he was a boy. We were thrilled. This is what we both secretly pictured for our complete family. As the apt went on (and on and on and on) Patrick had to eventually take Keith out to the car. I noticed that the tech was spending a LOT of time on baby Jack's heart. She was watching it in slow motion over and over. I thought something looked a little off, but who knows with these machines. I then noticed the tech had similar behavior with his brain. She was a bit snippy with my baby girl too. The mood in the room was thick. Eventually she wiped me off and asked if I meet with Dr C after this. I explained yes, that I was going and Patrick was taking the kids to lunch since they were done. The tech said, "ok. well I need to talk to your doctor about the scan. please wait in the main lobby an maybe do not have your husband leave yet. Your doctor will need to speak with you both." She then handed me a couple of pics, but kept the rest. Well... suckity suck suck. What on earth did this mean. I asked P to come back in and he could immediately tell something was wrong. After some more waiting, who knows how long, I was nervous as all get out, they took us back and Dr C said to her nurses to "find Rachel and get her the hell back here." Well... suckity suck suck some more. :( She didnt do any normal talk - she got straight to it. She said that Jack's right side of his heart looks larger and that he has fluid on his brain. My kids were in the room so I just stared and silently lost it. My world crashed. Dr C set up our Level II U/S with specialist at the Plaza hospital for the next day. I sent P and the kids home because a nurse was needing to take some blood tests to see about potential disorders. I was trying to be brave and faithful. I knew God would care for us and our boy, but I dont do well with unknowns. Once in my car I completely broke down. I spoke with all my mommas and drove home to my babes.

My mom drove in from two hours away to help with the kids while we planned for our apt. Our apt the next day was for the afternoon so I told P to go to work in the am and meet me there. He was so willing to do anything, but I felt the peace of the Lord and that we would just see so i wanted to go about normal until we had to do otherwise. That night I kept thinking that perhaps the Lord laid kids with special needs on my heart so many years ago to prepare me for this. I knew I could rock having a babe with special needs and I began to have HOPE that Jack would have Downs. Hope for Downs? Did I say that? Yes. I did. I didn't care what syndrome or issue he may have I just wanted to HAVE him.

Pregnancy Notes - Weeks 4-19

~November 17, 2012 - The morning of my 29th birthday my husband handed me a Spa Gift Cirtificate and I handed him a positive pregnancy test. I WIN! ;) Baby Jack was a huge shocker at first, but we knew we wanted a third child super bad, so even a bit earlier than expected he fit right in!
~Weeks 4-7 - I had small stomach aches after I ate, like I did with my first two, but otherwise no symptoms
~Weeks 7-12 - low maintenance symptoms with no showing. I craved milk, OF, meat, and was a bit tired, but nothing much.
~Week 11.5 - Doctor visit with kids and my momma. This was my first opportunity to hear the heartrate. I had been super nervous and felt like something was wrong or the baby was gone because I had few symptoms. And even though that was normal for my pregnancies I still felt uneasy in my mommy heart. After a minute Dr C found it at 182. I am having tailbone pain and Dr said that is because "she" is sitting back further.
~Week 12 - I had a horrible deathly cough cold - ICK!
~Week 13.5 - I STILL have the cough of death. I am still not showing, but I could just swear I felt "her" move a ton last night. This is also typical for me to feel movement at 13 weeks. I am breaking out and, like usual, having some sciatica. I have had two boy dreams and one girl dream. What'll it be?!?! :) We are still thinking Jack Andrew ad maybe Kathryn Lee?
~Week 14 - I started showin a little! (Still coughing constantly)
~Week 16 - And the cough is finally OVER! Whew!
~Week 17 - I still havent gained any weight. I had with the other two at this point for sure. I am still thinking the baby is a girl - perhaps Kathryn Rae.
~Week 18 - I gained FOUR pounds this week! Some nesting has started - WooHoo! This new house needs to be put together so that's great.
~Week 19 - I gained another pound :-/ I am so super excited for our Ultra Sound!!! I feel the baber move a little more. No other symptoms. No maternity clothes yet, but soon.
~Week 19.5 - ULTRA SOUND - It's a BOY!!! Heart rate 154 and heis 11 ounces. Just the right size.

INTRO - Our Family

The Lord has blessed us with such a large magnificent group of friends and family and I'd love to be able to share my soul with all of them and hear theirs in return, but since the children aren't too keen to me having endless hours of phone time I thought perhaps blogging would be nice.

For those of you who don't know us...
Patrick and I met in highschool and have been together since we were 17. We are a perfect fit and couldn't imagine anything better. We are both from Wyoming, but moved to Missouri for college. After our undergrad (mine in Elm Edu and his in Philosophy) we married and decided to stay in the area. After marriage, but before our babes, we both attended grad school (mine in special edu and his in law). In November of 2009 the Lord blessed us with our teenie baby girl, Layla. Layla is a smart, beautiful, fire cracker. She has a fabulous sense of humor and a huge heart for babies. Layla is the best big sister ever. She is my best friend and my biggest source of drama ;) Oh that girl and I go rounds. I am really looking forward to her teens. ;) ;) When Layla was 18 months I quit my job teaching the second grade (after 5 years) and began to care for her full time from home. In December of 2011 the Lord blessed us with our sweet boy, Keith. He is handsome and so very smart. His face shows all of his thoughts and feelings. Keith is more laid back than his sister, but is still very curious and social. I have been working behind Patrick's back to make Keith be a momma's boy. :) The two of them have a lot of cuddles and a few fights. We adore them! In November 2012 we discovered the Lord has again blessed us with a third baby. (Surprise!) And THAT is where this blogging journey begins...