Tuesday, May 21, 2013

30 weeks: lots of emotions & a big hospital visit

30 Weeks:
We made it. Thirty weeks seemed so very far away and yet here we are. Now to go that last quarter stretch please dear Lord. 

The following are multiple posts written over a week's time and ending with our big hospital visit. It was, to say the least, an emotion week...

Im so scared for our baby to pass within. Im so scared for our baby to pass away in our arms. Im so scared for our baby to live in pain. Im so scared to hope for the very best possible and then have it taken. Im so scared for each and every possibility. Im so scared for silence after birth. 

Mother's Day:
My dear husband gave me a Mother's Day card from himself and one from each of our three children. It didn't cross my mind to expect a card from Jack, but it was very powerful for me. The card has a momma bird holding a baby bird and it says, "For mommy with love from your little one. From your first morning smile to your last goodnight kiss, it seems like there isn't a second you miss, of being the very best mom there could be to the luckiest, happiest baby- that's me! Happy Mother's Day- love, jack." I will always be Jack's momma no matter the outcome, as we all are to all of our children, but there was something very horribly powerful in wondering if this was the first and last Mother's Day card I will get from my boy while we are on earth together. I want more cards from him. I want him to color all over the inside and envelop of next years card. I want him to try to sign his name on his card in four years. I want him to take too long picking out his own card with dad at the store when he is seven. I want him to send late cards to his ole mom from college. And I want his children to send me Grammy cards when he is a father. That's all I want. I just want more cards from him. 

Less Grumpy: 
I have been through so many emotions this year. I found myself having some angry feelings about all sorts of things. I almost didn't want myself or others to be allowed to be sad or angry over minute things. I felt such a new extreme low that it invalidated all other emotion. I now know it was ok to go through those feelings, and that they will come and go again, but I am thankfully back to feeling the highs and lows of every day life again. It is almost as if I went from "nothing matters anymore" to "every little everything matters". It is ok to feel sad over a grocery store trip, a deleted dvr, or a missed spot on painted toes. Sure, as long as perspective is always kept. Even with me. I can feel sadness over the cards I have been dealt as long as I remember how blessed I am and keep perspective. Also I have been finding new joy in life big and small. What awesome kids I have that fight over who gets to sit on momma or what an amazing life I have where I've been blessed with enough dishes to cover my huge counters multiple times a week. I've moved into a "just live- be thankful- keep perspective" sort of attitude lately. We shall see what next week brings. ;) 

Last year I saw a show about a Muslim American family and they had a common saying when they spoke of things to come "God Willing". This is a similar mentality to where I have found myself lately when looking to the future. It used to be "Layla will start kindergarten in the fall of 2015" and now it is "Layla will start kindergarten in the fall of 2015, God willing" OR "we will live in this home for years to come, God willing". While I always knew tomorrow was not promised, but it is now on the tail end of all my thoughts to remember that things may just not turn out the way I planned. Half of it is fear. Fear that there will be more heartache. And half of it is just experiencing it for myself to a deeper degree than before. I don't know the plans my lord has and while that won't stop me from dreaming and praying, it does give me pause to remember God Willing and not to take anything for granted. (OR to take any heartache personally!) 

False Alarm Realizations: 
Today I had a false alarm worry that your heart had stopped. I then realized that in my worry and concern there is but nothing I could do to save you. If in fact my fears are realized and your movement has slowed or stopped that is where it ends. Helpless realization has yet to be accepted in complete. Slowing is simply the beginning of the end. Perhaps everything is fine. You would not leave me would you? God you would not take you, right? For you both know that my soul could not be expected to carry on. This can not be real. This can not be something that is expected of me. This is not a burden I can bare. For I know not a love greater than I have for you. For your brother, sister, father. I fear for my life. I worry my heart may not continue to beat when yours has stopped. 

A Big Week:
-This week we also met with out pastor to discuss emotions and touch on Memorial plans. We didn't want to do that planning because who knows what will happen, but that is over now and we have a better idea of details and needs in that area. It was also nice to talk to him about some other spiritual stuff. 
-Aaaaaand this week I became an auntie (times six!) Baby girl Klara was born. She is such a sweet blessing and I am trying to show her how strong her auntie is by encouraging my love for her to overpower my sadness for Jack's unexpected path. 

Children's Hospital Visit: 
-It was definitely a long draining day at the hospital. We REALLY enjoyed all of the staff members who were a part of our testing and discussion. We are glad we had the overview, but wouldn't necessarily say it was a "good day". We appreciate the ability to look deeper at our son, but it is never pleasant to discuss all the sadness that surrounds our situation. 
-We started with an hour overview of me and my health evaluation to make sure I am healthy enough to deliver at a children's hospital. That went as expected - no issues. 
-Next we had a TWO HOUR ultrasound with an amazing sonographer. Definitely the best US I have had. She was the perfect mix of professional, informational, friendly, and she loved my boy and spoke to him as the amazing blessing that he is. She took great shots too. It seemed she was really able to see all his parts, especially the heart and brain. Jack weighed 2lb 13oz and was 23% - "not a concern size wise". Heart rate rocked it at 152. 
-After the US we met with a team of seven doctors, nurses, and reps for almost two hours. I have no clue exactly what was discussed.... Everything I suppose. It is all so Overwhelming. It is just a mess of "what ifs" and plans or no plans. All needed, but so much to internalize. We discussed potential interventions and conditions and and and. And since I don't want to keep you for two hours here is a basic overview of our trouble areas:
-Heart: probably a milder form of a severe defect called hypo plastic left heart that will close off blood flow sometime after birth and slowly stop pumping. (Decisions on surgeries are out there, but it would all depend on making it to and thru birth and on being quite solid with the brain and breathing and size.)
-Brain: still appears to be a level of holoprocencephaly, but we don't feel any more knowledgeable about his brain after today. All parts are present, but the division did not occur, and there is no knowing what delays may be present. 
-Kidneys: were looked at and measured, but not spoke of as an issue... Not sure if it is too minor compared to other or if they didn't think it as bad? 
---CORD: this is the new horrible part... apparently the umbilical cord has limited flow from me to Jack. Normal flow is a "3" and ours is at a "6" with a seven being "critical". This could worsen as pregnancy continues and eventually would close off and cause death. This needs to be monitored weekly from here on out. If the flow level gets to critical we can induce labor. However, there are more decisions to be made there. How soon or how not soon to induce?! Which is the worser evil: inducing early since the cord is not functioning, but being way too early to help his heart and brain and weight OR waiting it out and risking still birth knowing the cord is closing?! Why do we have to decide this? Having a sick child or losing a child is hard enough... Why must all these life changing (not necessarily bettering) decisions also be involved? :'( 

-I will continue my OB care at my regular office for another month and if we make it to 34 weeks I will transfer my care to the children's hospital. 
-Weekly OB visits
- U/S check up with CM Parinatologist June 7th to check the cord

Saturday, May 11, 2013

29 weeks: two months & OB

29 Weeks:

Two Months: 
It has been two months since we found out about Jack's Trisomy 13. Most days it feels like it's been years since our new life. Our new normal. We went from thoughts of "Will it be a boy?!"  to "Will he live past tomorrow?!" I had a brain full of room arrangements, nursing details, cloth diaper aspirations, clothing prep, kindergarten wonders with a summer baby, family dynamic curiosities with two brothers so close in age, and all those sweet day dreams one has when starting a new life milestone. And then all at once none of those thoughts were relevant. I went from researching  nursery decor to researching heart defects. I think I had a feeling we would still be here together in two months. I know my husband did. 
It has been such a roller coaster of emotions. Not really ups I guess, but lots of downs and oks. Back and forth. God has kept us sane. Our babies have kept us sane. And definitely Jack has kept us sane. He is still in there fighting. Deserving of love. Moving forward. And so shall we. 
What will the next two months bring? I can pretty much guess they will be more difficult than the last two. No matter their path. The next two months will bring forth a lot more answers and even more questions Im sure. 

OB Visit:
Jack's heart rate was great at 141 this week. I also took my glucose test, but haven't received the results yet. Ive never had to go back for a second test, but I'm worried this time. I just feel so low energy. Like I went from my first trimester straight into my third. 
The doc also talked about the reasons to induce at 38 weeks. This is hard for me. I had my first two kids at 41 weeks and am pretty stubborn about letting mine cook till they're ready. I understand the differences for Jack. I understand birth weight is helpful, but I get the other side as well. Hopefully at our ultrasound in a week we will get a size estimate and percentage. Dr C really expressed to me the horribleness of a stillbirth and said that she really wants me to have a live birth and it is believed 38 weeks can get that better. I can do 38. Not 36 unless something is wrong. But yes 38 Ill do. I kept saying to her IF we get there. She said she is hopeful and looking towards 38 and itll come quick. I thought that was sweet. There just have been so many losses around 33 weeks in my Trisomy Mommy FB group. :-/ Im super nervous. 

1. OB checks every 2 weeks
2. Children's Mercy in late May for our meeting with ultrasound, OB, anesthesiology, Perinatology, cardiology, neonatology, genetics, and social work to discover more about Jack's specific needs and decide if we may want to deliver at CM.