Monday, April 29, 2013

My Girl

27 Weeks:

My Girl:
My daughter is beautifully smart and funny and sweet and sassy. She is without a doubt MY girl. She is connected to me from the deepest of my being. We are each other. She takes care of her little brother with such pride and confidence. How can a three year old be so very in tuned with the needs and feelings of those around. She is forever saying the cutest things. When Bubby is doing something he should not, she is there to lovingly scold him while half smirking because she thinks whatever he is doing is cute. She'll call him 'son' or 'mister naughty' or by his whole name before reminding him of the house rule. She was born to be a big sister. Perhaps born to be a mother. Before she was even one she could rock, feed, burp, change, and love on her baby dolls. She is obsessed with pregnant woman, birth, and newborns. Don't get me wrong, as a big sister, she knows when to use her self granted authority, her size, and her sneakiness to be her own version of naughty, but all that color is what makes her who she is. As a momma my heart has a whole other part that grieves for my girl. She is so excited for her newest brother. She talks about how she has 'her boys' or 'her two babies'. She already has an extreme attachment towards Jack. And it scares me down to my depths at what she may have to endure in the months to come. She is my extreme. When she is sweet she is more precious than I can describe. When she is rotten she is almost naughtier than I can bare. When she is funny she is a flippin riot. And when she is sad, when she is heart broken, she is torn deeper than she should be able to comprehend. How will I do it? How will I ever protect her? How will I possibly explain to her that she may lose part of her world? Part of her heart? I can not do this. God you must. 

Tuesday, April 23, 2013

26 weeks- BIG Week: vaca, OB, 3d4d, AH

26 weeks: 

Holy Vacation Batman:
The honey and I went out to a fancy dinner and stayed in a downtown hotel ALONE on a week night for free thanks to a lovely friend. It was nice to eat my food while it was still hot, to stay at the restaurant as long as we wanted, and not to have to pick up the floor before we left. ;) It is always wonderful having alone time with my man of twelve ish years. (Thanks for babysitting mom!)
THEN we packed up the kids and headed to Branson for a weekend trip. Our hotel had a water park so we did that several times. We also went to shopping, walking around, mini pirate golf, and to the Dixie Stampede - loved it! The kids were great and it was nice to get away. 

OB Check Up:
Jack was quite active at this week's check up. Heart rate 150. Dr C noticed my tummy growth and commented on how 30 weeks is quickly approaching. I had her print out his blood tests. Once we saw abnormalities in the 19 week U/S we got these blood tests within minutes, but never received the results since things quickly turned worse and an amnio was done the next day. Amnios are a way more accurate test. In fact, Jack's blood tests are much the same as the ones I had done with my first pregnancy. Completely normal. Those tests just look at 18 & 21 - not 13. So we would not have known specifics without the amnio. 

3D/4D Ultrasound: 
Im not sure Ive wrapped my head around this experience yet. Baber looked and acted about how I expected. (Perfect) The tech said he has some hair so that's fun. He does also have a cleft lip and flat nose, which we were expecting. But he didnt let us get a good face picture because he was too busy with his two hands and two feet right in front of his face the whole time. We got lots of bootie shots though. :) It was the interior opinions and findings that have me in more of a confused state. There were three things that I am moving around in my mind... (heart, brain, kidneys) We got a very short look at 19 weeks where it was said that Jack's heart's left side did not develop. That's not what this 26w scan showed. He does have a Heart defect. His right side is thicker and working harder, but the left side IS developed. The sonographer said it is not Hypoplastic left heart like I had thought. Also at 19 weeks we were told there were whole parts of the brain that were not developed and that is not what this scan showed. There were brain issues, but it may or may not be the holoprosencephaly brain after all. Having these two big issues be brought to medium issues is confusing for me. First because it doesn't change that there are issues, second because it doesn't change the T13, and third because there was no doctor Overview at this ultrasound so it Is hard to know what to grab hold of or what to make of her personal thoughts. The third issue was new to us. The sonographer said that his kidneys are very large and thick walled. I guess Dr Mom has a new thing to research. We don't know what to think about the Information... I guess we are just eager to have our 30 week scan at Children's Hospital even more so now. 
Otherwise we seem to be a bit down and sad today as momma and daddy, but Im not sure exactly why yet. We both loved seeing Jack and we didnt get worse news really so... I don't know why we feel down. Just one of those days I suppose. 

Alexandra's House: 
It was nice to sit and chat with the beautiful head of this organization. She is always full of advice and years of experience. She gave us some soft hand made blankies to snuggle with baby Jack and then to keep as a family later on. I look forward to my next mommie's group in some ways. They're heart breaking, but super supportive. 

1. OB checks every 2-3 weeks (including glucose screening-eww) 
2. Children's Mercy in late May for our meeting with ultrasound, OB, anesthesiology, Perinatology, cardiology, neonatology, genetics, and social work. 

Monday, April 15, 2013

25 weeks: Awkward Convos, Prego Dreams, & Stranger Danger

25 weeks: 

Awkward Convos: 
Do You Feel Awkward Talking to Me?
That's ok! Everyone does. It IS awkward. No one knows what to say and that is OK. Are there responses I prefer over others? Sure! But I don't begrudge your attempts. I have read some interesting blogs and posts on what to and not to say to someone who is grieving or in a difficult time. I think it all depends on the person, but for me I always appreciate those of you who are sad. Let me explain... Some of you have sat and cried while I spoke and that makes my heart swell with love for you. To see that you hurt for us makes me feel connected to you. You get me. You validate my pain. You do not make me sadder. You do not bring up any feelings that I already don't always have sitting on the surface. It is more than ok to be sad. I am. 
Sometimes for me the harder awkward moments are when friends seem to take my pain lightly. I have had very few of these moments. Next to none. When they are easily convinced it's fine, you're fine, I'm fine, we're all fine. This makes me feel they don't completely respect the life of my son. Or the torture of my mother's soul. Yes, that friend's  life will go on. Sure, technically my own life will go on, but some day my son's life will NOT go on. And that does not scream silver lining to me right now. Yes. You're right, I do have other children. Yes. You're right, I can make more children. But I'm not sure what either of those things has to do with Jack. Children are not interchangeable. 

Pregnant Dreams: 
Throughout all three pregnancies my biggest sleep restricter is my dreaming. Many friends and acquaintances have been 'blessed' with my detailed dream descriptions directly involving them doing something silly. Often though, my pregnant dreams are nightmares. Usually I just get up and take a lap around the house to wake up and convince myself that it wasn't real before going back to bed so the dream won't be continuous. However, since March 7th, when we found out the devastating news of our son, my nightmares are so realistic and carry such truth that when I wake I simply cry and realize that it IS all real and it could all happen.  Many, many nights are ruined by bad dreams now days. :-( I know I need to be more diligent in praying specifically about this before bed and in guarding what I read before bed as well. 

My typical personality is quite comfortable in public and party settings. I feel at ease schmoozing with the best of them. However, lately I find it difficult to be away from my safe zone. I feel so much support and comfort with family and friends and seem to drift towards that more than ever. It is like the smiles or happiness out there are difficult for me. Sometimes I just don't want to smile. This has never been an issue before, but my heart is so heavy that I'm not as easy to please I suppose. Of course I have loads of things to be happy about and am in general a positive person, but I just get to a point at functions where I feel ingenuine and want to go home and hide. One of the main public issues is that I am now quite visibly pregnant. So strangers are constantly wanting to talk about my baby and how excited we must be and how excited the kids and fam must be. Never would I say that I don't treasure my Jack more than I knew possible, but excitement is not an emotion I feel towards my pregnancy right now. Some strangers make a comment or two and let it go, but some won't give it a rest. I try to just give straight answers about his due date, name, age range with my other kids, ect but eventually I don't want to talk to them any more. A couple of times when someone won't let up I tell them of our heartache in a short sentence or two and that's the end of it. Before this I was a guaranteed pregnant lady approacher. Not so much any more. You just never know. However.... If everyone knew and no one ever asked ME about how I am or about MY baby I wouldn't like that either. So I guess, yet again, there is no right way to go about it. 

1. OB checks every 2-3 weeks
2. Maternity pics this week
3. 3D/4D Ultrasound next week
4. Alexandra's House mtg next week 
5. Children's Mercy sent us our schedule for our late May appointment! We will have an anesthesiology apt, MD U/S, and then a team meeting with Perinatology, cardiology, neonatology, genetics, and social work. 

Sunday, April 7, 2013

24 weeks - OB Visit - Pray Big

24 weeks:
No energy still...
My blood pressure was high (for me) at 130/74. Hopefully just due to nerves for apt. Jack's heart rate was 135 and he was a mover in there.

OB Check Up:
I was super nervous for this first apt, as I had not seen Dr C (or anyone) since before our diagnosis a month ago, but overall I felt better by the time it was over.
We first discussed stillbirth details and potential situations. When I talk about this with people it is a total fact only, out of body, experience, but it gets the job done and the info transferred.
My doctor did say that in her experience the stronger and more active the baby is and the more he is continuing to grow the more likely he will have a live birth. She said often Trisomy babies' growth will slow. Jack's has not. The dr also discussed how the more difficult times and decisions will come if Jack does not get his angel wings within. I am not hoping or wishing for one scenario or another. I am not thinking which would be simpler or better or whatever. I just want Jack to do whatever God has designed him to do whenever that may be.
I just want to be as informed as possible for the different roads. Which is what we discussed next... We told Dr C that we are planning to go to Children's Mercy at 30 weeks to get more information on Jack specifically. So far all we've been offered from the first hospital was info on his trisomy diagnosis and not on him as a person/patient. That hospital was finished with us the day My amnio came back with T13. My OB said she is in agreement with more info, but wanted us to truly understand the very bleak likelihood. She didn't want us chasing unreasonable hope. We assured her that we knew what Full T13 involved, but that we just needed to understand more and be prepared for the what ifs. She was very caring and said she is praying for us. Her personality and mine are very different, but have meshed well thru all three pregnancies. A great balance. My honey had a hard time with the apt. He is such an awesome caring daddy. This is so hard on him. I am sure sitting there discussing all of the horribleness for so long is hard - especially on him. Sometimes I feel like since my mind is constantly consumed with Jack and people discuss it with me DAILY that I am more used to these conversations maybe? Or numb?

Speaking of Numb:
Sometimes I feel like Im in an alternate universe. Sometimes I look around and feel like Im watching my life instead of in it. God, what am I suppose to do with this? How is this going to play out? I just don't know what to do with each moment. I find myself living in a happy moment and then BOOM I halt and remember my world is tilted upside down and I think waaaaaay to much. I wonder if I am coping by living just on the outside of my body and one day I will snap and go coocoo or if this is how I will deal always. Either way, God is good and we are getting thru.

Pray BIG:
Disclaimer: This is too complicated of a topic to properly express in writing. I see every side and feel every which way at different moments, and obviously every situation is different. But for today...
I think we all have different ways and styles of praying. We all go to God, speak to God, and listen to God in different ways. Three times today I have heard about 'praying big'. Bigger than you normally would. Asking God to heal the drought not with a sprinkle or a drizzle, but begging Him for a massive rain storm. Hum... I understand this concept with so many situations. I do. But I am having issue wrapping my head around 'praying big' with baby Jack. Typically I am not the type of pray-er who asks God for specifics. I find my prayers asking God to be with and comfort all involved and for us all to be able to see the good, the God, in the situation. Im more of a 'your will be done' kind of pray-er.
So, when encouraged to 'pray bigger than big' to ask God for exactly what I want scares me. I guess I don't want to find myself in disappointment later. Jack is who he is. His baby body is different than ours. His chromosomal make up is very clear. I wish I had the strength to beg for it all to change. To beg that God will let me keep him here. I know God can do anything. But can I ask THAT of Him? Sure I have snuck in tear filled prayers begging for healing or to wake from this dream. (I can't type 'nightmare' because nothing in my beautiful life is a nightmare because I am so blessed.) But overall I ask God to be with us. To comfort us. And most of all I praise Him for my sweet boy. I praise Him that Jack is so special and so very strong. I know Jack will and is making a huge impact on this world. I ask God to guide his journey and keep him comfortable. To cover my babes in His comfort. Sometimes... Part of me feels almost sinful to ask God to change something so set specific ... Do I wish differently? Do you even have to ask?! But can I really think my wishes and plans are better? Bigger? Sure I wonder how the heck my sweet little plan of my family of five, my girl and two boys living life with us on earth till we die sixty years from now, could possible be a bad plan, could possibly not be God's plan, but there must be some reason... The HAS TO be some reason why. Why?! Right? Right!? So... I shall trust God to help me praise Him in whatever story shall be ours.

1. We have OB checks every 2-3 weeks for the next few months. 2. My dear photographer friend Briana is going to come take maternity pics mid April and will also photograph Jack's birth. (This was all highly recommended to me from other momma's who have already traveled this journey. It may be uncomfortable and cause some sadness, but they said it means a lot to them later on.)
3. In late April the amazing people at Prenatal imaging are doing a special after hours 3D/4D ultrasound for us. (This is something that I really hope we get to make it to.)
4. And then if we make it to 30 weeks in late May we will start our Children's Mercy journey.