Saturday, December 14, 2013

Life with MORE babes??

Patrick and I have always had a heart for children in need - for the orphan. We've spent time with children in both Mexico and Nicaragua who were in need of a loving home. When we first married we discussed adoption a great deal. We joined a group at church and learned whatever we could from others. As most of you know, adoption isn't easy. It can be stressful, risky, expensive, and timely. Back then we prayed about it, appreciated the idea of it, but were perhaps a bit scared away from the difficulties that could come with adoption and not even sure where to start. Before we knew it life started moving faster. We quickly got pregnant three times in three and a half years. Boom. Boom. Boom. It was quick, easy, fun, and free! But then our life came to a screeching halt. When Jack was diagnosed, when he was born, and when he died our world stopped moving. We have spent the last 5-10 months worrying, grieving, celebrating, mourning, and picking ourselves up. God has shown He is there. Not always in the way we'd hoped for, but we know He knows better. God gave us Jack. Jack caused us to pause. Jack showed us that we are capable of finding strength and immense love in a difficult situation. Jack showed us we are strong enough. And so when we looked at where our family would go next we were unsure. Scared. Worried. Jack's Trisomy13 is not something that was caused by our genetics, and so we do not have extreme fear of it happening again. People have asked, and yes, we are able to have more healthy children, BUT we feel like God is reminding us of our other capabilities. Our strength. We feel in our hearts that it is time to revisit adoption. We are drawn to our world wide family and responsibilities. John 11 says, "And not only for that nation, but to bring together and unite all the children of God scattered around the world." And in Matthew 18 God says, "And anyone who welcomes a little child like this on my behalf is welcoming me." So it is our prayer that God will lead us to our next child. Our arms are open. We have started our Adoption Home Study and after much research are currently finding ourselves leaning towards international adoption from Ethiopia. You have shown that we can count on your prayers and support. Thank you so much for reading. You can expect my typical unedited rambles and updates here. ;)

Saturday, November 16, 2013

My birthday. Again.

November 17th... 2012 - It was a Saturday morning. My 29th birthday. Layla had just turned three and Keith was eleven months old. Patrick let me sleep in since it was my birthday and he entertained the kids and worked at secretly printing off a spa day gift certificate for me. I had secrets of my own as I had been feeling a bit odd and snuck to take a pregnancy test. Quickly the lineS appeared and my first thought was " holy crap". An unplanned baby for a very planned momma. I smiled and stuck the test in my pocket and walked to the kitchen. When my husband kissed me and handed me the gift, I in turn gave him the positive pregnancy test. As the day went on my mind was consumed with this new unexpected life living within. We planned to buy new furniture at Nebraska Furniture Mart that day for our new home we would take over in two weeks. What a blessing that we would have a new home for our newly enlarged family. I still remember that it was me (and not the kids as we feared and warned) that absent mindidly knocked over a huge display of hundred dollar vases while shopping. My husband smirked and I knew what he was thinking, "pregnant brain" And so it began... Happy 29th birthday. 2013- what a year... Never would I have imagined it would end this way. My birthday carries so much heartache. Ive tried so hard to embrace it with open arms. I fear I've hit a bit of a snag. I should be at home with a new baby, just getting into the swing of having three kids four and under. But Im not. I'm galavanting out west spending time - a wonderful time - with my husband 'celebrating'. I can't help but know that if we had Jack with us we wouldn't be here. It is hard to enjoy with that realization. Jack being born on 7-17 would be four months old on my 30th birthday. As I imagine ahead to 31... In 2014... I can't help but struggle to breathe in absolute trepidation for what might wait ahead this next year. I no longer walk blindly thru a trivial life. Yes, I know it will be blessedly beautiful as the last has been. Though I feel scared and weak. BUT... I will wake tomorrow. I will greet the day. And I will rejoice for The Lord is good. I've had thirty strong years. Not everyone has that. This I know. Here's to God for these 30 years, may I work harder for His Glory. And here's to my boy - I promise I will never forget these dates and moments we shared - and while this the passing of time feels like it is shoving me further away from you, know that deep in my being I do realize that it is in fact drawing me closer to the day we shall meet again.

Sunday, September 29, 2013

Ten Weeks Out

ME AT TEN WEEKS: Jack's influence on my life is beyond words. Every day I see new ways where he has changed and molded and bettered my time here on earth. Many old friendships have become new and stronger than ever. I have so so many new friends that ARE my heart. My relationships with my parents are better than they have ever been. And my husband and children are so precious to me that just thinking about how much they mean to me shortens my breath. I sometimes struggle though lately with my relationship with my Lord. I don't have doubts. I don't really even ask why or have anger. But it is almost as if I have awkwardness towards Him. I still read my Bible every day. I still pray every day and thank Him for all He has provided. But I just have an uneasy feeling. Perhaps I am angry, but have such a mix of fear and gratefulness that I feel guilty allowing that through and so it is like there is an elephant in the middle of my faith walk that I don't seem to be able to hash out with God. Sure, the experience of having and losing my son has strengthened all those relationships listed above, but don't tell me that couldn't have happened while allowing me to still have him. My other two children have taught me countless lessons and I still get to have them. And they will continue to teach me as they grow and change. It has been ten weeks since we last held our son and so much has changed. Im a new woman for sure. So new I don't even know myself. I don't feel comfortable in my own skin and I surely don't have much of a memory for who I used to be. I feel like Im stuck floating inside of myself. Im able to see out and witness all of the beauty and heartache swirling around me, but don't feel a lot of permanence from my moments. However, I am better. I am able to have conversations and remember appointments better. I even felt like spending some energy on myself recently and found myself purchasing clothes and painting my nails. A fellow angel mom (who Ive never met) sent me a letter and she said it best when she encouraged me that while my love for Jack will endure my pain will ease. And I figure that if I am already seeing evidence of this at ten weeks than there may just very well be hope for me after all. THE REST OF THE FAM AT TEN WEEKS: I don't speak publicly about my husband's grief journey because he is a pretty private man, but my very young, sweet children continue to go through stages of their own journey. My three year old daughter blows kisses up to heaven each night. She has also had a few queries about death and heaven lately. She saw some cow bones at the ranch one day and asked how the rib fell out of the cow. I explained to her that the cow died and his bones are left. She was silent for a long time before wanting to see them again and then began asking questions about how the cow died and how Jack died and I could see her wheels turning. She does that sort of thing often. I think she is a bit confused about the physical body and spiritual soul. (Aren't we all! ;) ) My one year old son is so sweet with his journey. He often points to pictures of Jack and says "Baby Jack Baby Jack!" I figured he was just copying what others said, but then once he said it towards my belly and then last week we were cuddling in the three am silence and he asked me, "Baby Jack go? Baby Jack doing?" It amazed me that he would possibly have memory or understanding of any of it. We shall never know for sure I suppose. Their behavior has not been the best lately. I don't know if it is all part of the terrible toddler stages, their grief journey, or more than likely caused by their reaction to mom's short fuse. Either way, they keep us on our toes. :) THANK YOU: Thank you for still checking on us at ten weeks. Thank you for understanding that we still hurt and remain shocked and disoriented. Thank you for the cards and letters and messages. Thank you especially for sending me photos of you wearing your jack bracelet so I know all the adventures that he is getting to experience in your heart. (I got more bracelets in - please just let me know if you want one) Thank you for being patient in awaiting your personal thank you card for the meal or gift you sent, for I have yet to wrap my head around writing them out. Thank you for reading and as always thank you for your grace in knowing that I may not always be able to express myself properly in this format, but loving me anyways. Here's to week eleven...

Friday, September 6, 2013

Jack Packs & More

JACK PACKS: I have assembled a large packet of information and ideas for pregnant mothers who will deliver a baby that has a life limiting diagnosis. The purpose of the Jack Pack is to pass on these ideas so that mommas can make the most of their special moments and have memories forever. Often the shock and grief and hope of the situation fogs the experience and I think the worst thing would be to look back and wish you would've known to do this or that. I figured that I already did the footwork so perhaps I should share the information. Jack Packs will be placed in areas where pregnant woman are most often as well as places where pregnant woman may go for support. Please tell me if you know of someone who could use a packet. Here is what they include: 1. Memory making ideas for pregnancy 2. Memory making ideas for the hospital delivery and birth 3. Hospital Bag Idea List 4. Recommended Connections 5. Funeral/Memorial Planning 6. Memory making ideas for later 7. Our Story (briefly) 8. Example Birth Plan 9. Grief book list for adults and children 10. “On the Night You Were Born” (a special book from us to you) LABEL MAKER: I've been having lots of 'nesting' lately. Perhaps it is because I finally have some energy back or maybe just that I have spent a lot of time at home this month. I have major urges to clear everything out, have a sale, and stick labels all around. We are coming up on the one year mark being in what I hope is our forever home and I am wanting to finish up the areas like the library, storage room, craft room, and garage that have yet to be set up. These tasks are difficult with my limited energy, but even more difficult with my special toddler helpers. Speaking of... MY BABES: Little Miss seems to be adjusting to preschool well and while Bubby misses her I can tell he enjoys his mommy time. Ever since Jack was born my one year old has seemed a bit more mommy attached and wanting to cuddle more. I cuddle and rock him more than I used to for sure. Often I cry while rocking him wishing I could rock Jack too, but am quickly brought back to smiles when Bubs sits up, smacks me, and demands "sing mommy!" Oh these kids... They keep me going that's for sure. My daughter has been naming her baby doll 'Jack' lately. She says that her doll died but then that he got to come back from the sky. She has different ways on different days of coping with her grief. Whatever she needs we are here to help her. It doesn't bother me for her to talk like that. She also enjoys looking at Jack's things and reading child grief or heaven books together. Her teachers at school said they wouldn't know she's had any home issues and say she is adjusting well. So that's a huge blessing. ME? How am I? Oh I don't know... Depends in the day. The moment. On a good day I feel blessed for the moments and experiences I was granted with my son and get excited about helping others in Jack's memory. Im able to move about my day's tasks and go in public and speak openly. On a bad day I feel alone and empty and extremely anxious to talk to anyone or go in public. My arms and belly feel like they're trying to grasp into something and there's nothing there to hold. My heart physically hurts inside my chest and I have trouble breathing. On those days public is not an option and I avoid it at all costs so that the store doesn't close in on me. I find I can easily encourage other angel mommies for the most part, but then will have moments where my vulnerability sneaks through. I have started a grief group for parents. I get to go with a dear friend whose son also passed from trisomy 13 and I like being with her because she makes me feel safe. Also in the group is a woman who is probably in her mid eighties. Watching her cry when she speaks of the child she lost like fifty years ago scares me. She has had to Iive with a lot of regret though so Im sure that has drastically slowed her grief process. So Im hoping my 'no regrets' approach will allow my next fifty years to be a bit kinder on me. JACK: Jack has been gone from our world for seven weeks. I miss his sweet smell and his hair and his soft hand. I used to rub his fingers back and forth across my lips while I spoke to him. I have a plaster mold of his hand now and sometimes need to feel his fingers again. He had so many fussy times, but would often quiet right down when he would lay right on my chest. I want my seven week old baby back. I bought a bassinet for him. I had a cradle with my first two kids and then quickly moved them into their room after the first few weeks. But since my one year old is still in the crib I planned to have Jack stay extendedly in our room. I had also bought a carrying basket for him so I could take him out in the yard while the kids played and he would be up Off the grass. We had friends over tonight. I wish I could've taken him outside with us in his basket. Instead it is in the basement with his bassinet and all the tubs of little boy clothes of his older brothers that Id hoped he could wear. Oh gosh, I just miss him. I have a secret... You may think Im crazy, but Ive yet to worry about that so here goes... Many people think butterflies represent the loved ones we've lost - i think I agree - in some way - spirit or thought or something - well when we walk out in the yard with our kids a butterfly always joins us on our walk down to the lake. Always. It makes me smile. It makes me feel like baby jack is out playing with us. Our sweet family of five.

Thursday, August 22, 2013

Blessings Through Sorrow

-Blessing Through Sorrow: A List of all that Went Right -As part if my grief I have been thinking about all the amazing blessings surrounding my sorrow. A fellow angel mom recommended for me to do this when Im feeling down. I have decided there are so many blessings through my sorrow that I could separate them into three categories: pregnancy, lifetime, death. -Blessings During Pregnancy: 1. Jack made it full term. 2. The nurses and doctors at our new hospital were amazing 3. I had the support and prayers from my regular OB to move on to the high risk group at 30w. 4. We found a hospital who helped educated us, support us, and allow us to make the decisions. 5. We got pregnant while even using birth control ;) which means Jack was really REALLY meant to be. 6. My pregnancy was just like the other two 7. We knew of Jack's diagnosis at twenty weeks which allowed us to prepare our hearts and minds, but not having had prepared our home (if I had gotten a nursery all ready that would've been more painful after) 8. We got to see Jack on the ultrasound often 9. We got to do a 3D 4D ultrasound for free 10. I had support from other angel and trisomy moms 11. Family and friends supported and helped in so many ways 12. We were able to spend our pregnancy learning so much about Jack and meeting with so many different departments at the hospital for addition preparation 13. Everyone bonded with Jack in the womb 14. He was a BOY :) that's what we were secretly wanting 15. We found out about my pregnancy on my birthday 16. We got a beautiful new home during our pregnancy 17. Jack's siblings were excited for him to come 18. I didn't gain quite as much weight with Jack as I had with Keith 19. Being pregnant in the summer was not horribly hot this year - I got to go swimming lots too 20. Gparents were able to watch the kids for two days after the shock of our diagnosis so we could grieve alone. 21. People sent cards, meals, emails, messages... 22. My blog allowed me to connect and vent and even inspire. 23. My friend took beautiful maternity pictures for us. 24. We felt prepared and educated as much as was possible before meeting Jack -Blessings of a Lifetime: 1. We read a special children's book to Jack 2. All of Jack's grandparents and aunts and uncles got to meet and hold him. 3. Jack's siblings got to spend time with him 4. We got tons of amazing pictures during delivery and our stay 5. Jack came out crying! 6. Jack didn't need lots of medical intervention when born 7. We were able to confirm Jack's brain and heart issues right away which allowed our care decisions to be clear and unwavering. 8. The nurses and doctors were amazing. 9. We got to take Jack to the chapel 10. We got to take Jack out into God's sunshine 11. We were the only mommy/baby pair in the Fetal Health Center so we got tons of love and attention 12. The CSection went well and didn't have to be an emergency. 13. Mommy and daddy got to see Jack open his light blue eyes 14. Daddy and Briana (photographer) got to be right there with Jack in the OR the whole time I was being sewed up. 15. Uncle Evan watched the kids so the grandparents could all be there when Jack was born (and my dad got there that evening and Jack was still doing awesome) 16. Jack's two oldest cousins got to meet him 17. Jack had beautiful black hair and soft soft skin 18. We got to feed him all of his meals and the NG tube wasn't difficult to use 19. JACK GOT TO STAY IN OUR ROOM WITH US HIS ENTIRE LIFE - BEING HELD AND SMOOCHED THE WHOLE TIME 20. Jack weighed more than five pounds 21. He liked his passie and looked so cute with it 22. Jack loved laying on my chest 23. We got to sing to Jack lots 24. Chaplains from our church came to pray over him 25. Some friends were able to come meet Jack 26. Jack's daddy baptized him 27. We got a sweet video of big sissy singing to him 28. Jacks big brother liked him and kept saying "baby baby" 29. Our hospital had no visiting specifics so family could be there all night. 30. Little pieces is Jack reminded us of his big sister and brother each 31. Gparents were able to care for our older kids for four days in their own home. 32. Jack loved laying on my chest and hearing my voice. 33. God helped me safely they my surgery. -Blessings Even in Death: 1. We were able to spend the most time possible with Jack while in the hospital before we left to go home. If Jack had passed early in our stay we would've been left without him and still there. Jack stayed with us for so long that we even had Papa go get his car seat all washed and ready for the next morning's trip home. This was a struggle for us. We knew Jack was dying and we preferred for it to happen in our arms and not in the car or in front of our children. So the fact that we were able to be with him for our whole stay, but not have to attempt to load him up and have him pass in the elevator or garage was a blessing to us. 2. Jack passed away during one of the only times that all six grandparents were at the hospital. 3. Our older children happened to be at the hospital, but thankfully were not in our room. 4. Jack passed a little after seven pm so all of his and my day and night nurses were there at shift change to give tears and hugs and say goodbye. 5. We were not terrified like I always imagined me to be 6. After Jack passed to Jesus we got to continue to hold him for five more hours and do prints and molds while we waited for the funeral home. 7. I didn't have to hand my son over to the morgue or security, but rather my dad. 8. Jack didn't have to go to the morgue - the funeral home picked him up at midnight on a Saturday 9. Jack didn't fuss or suffer when he passed. 10. Our beautiful friend Courtney figured out that Jack had an amazing connection with the perfect biblical number seven. We found out we were pregnant on 11-17, found out about Jack's troubles on 3-7, he was born on 7-17, lived for 77 hours and 7 minutes, and passed on 7-20 at 7:02. 11. Jack's memorial went well with so much love 12. Jack's clothes still smell like him 13. We have a beautiful big box full of his things 14. The urn is beautiful and has space for us 15. After we handed his body away our nurse brought two hospital beds in and we both slept (drugged) the whole night before getting up and going straight home 16. Our three year old handled us telling her fairly well 17. Grandmas were able to stay with us for a few weeks after 18. Daddy got a week off 19. Friends brought us dinner for over a month 20. We got hundreds of cards in the mail and each one made us feel special 21. We have each other and Layla and Jack to keep us going 22. Our pastor met with us three different times 23. Our funeral home offered us big savings 24. Some of my fellow Trisomy moms visited me or sent me memorial gifts 25. The hand and foot molds turned out amazing 26. Our entire family has pieces of Jack that they carry with them each day now and forever 27. Jacks story will help others in some way, I just know it 28. There is more to come for Jack's impact 29. Looking at Jack's pictures brings me happiness and not sorrow 30. Jack is now in the arms of the only one who loves him more than we do. I feel like I could continue on in all three areas some more. So perhaps I shall add more later, but for now, I realize I am blessed.

Tuesday, August 6, 2013

Baby Jack's Memorial, Thoughts, & Future Blogs

Jack's Memorial:
Saturday was a very difficult day. I know they call it a "life celebration" and we are so very very blessed for having our boy, but it still felt so very sad. So many wonderful friends, family, and nurses came to celebrate Jack's life and I will forever appreciate and treasure those beautiful names in his guest book. There are some who couldn't come and some other angel patents who have asked about planning their own and so I thought I would share the specific events of our memorial...
Order of Worship:
-Piano Hymns - played by my husband's brother with slide show scrolling jack photos as people walked in
-Opened with a Vocal: 'In Hope- Chapman' - sang by a close friend of ours 
-Call to worship and prayer from our dear pastor
-Old Testament Lesson: Ecclesiastes 3: 1-14 read by my sister
-New Testament Lesson: 2Corinthians 4 taught by my brother
-Grandparent Reflections: each of our parents shared thoughts or prayers about their sweet grandson 
-One More Day song
-I read the children's book 'On the Night You Were Born' because I had read that to Jack a few times and it was our special book to him
-My husband spoke of thanks for our support as well as spoke on his son's strength and spirit
-Video Slideshow with 'VanMorrison's Brand New Day' that our photographers assembled of pictures of Jack
-The word of promise and hope from our pastor
- A triumphant feeling piano piece that my husband's brother played 
- benediction from pastor 
- receiving line to hug on momma and daddy while music and pictures of jack played
- cookies and coffee to follow  

Specific Moments Looking Back:
-HOSPITAL STAFF: There were a handful of nurses that came to the service. This made me cry more than anything. When I see them I feel Jack. I think of Jack. I remember Jack. They were our lifetime with him. They were part of his story. They delivered him. They held him. They helped him. They loved on him (and us!). And they were also there when he grew his wings. God sent them to us. I know it. 
Before we knew we were delivering at a new hospital, where Jack would be treated as a patient, I had prepared a letter for my nurses in the event of a still birth or very short life. The discrimination our first hospital gave us made me feel the need in my letter to beg the nurses for kindness, respect, and to treat us like any other family because they were in the presence of God. God thru his angel. HOWEVER, once we switched to the Children's Hospital I knew that letter was no longer needed. I knew our nurses would treat Jack with respect even though he was different. I remember our first ultrasound at our new hospital - the sonographer talked baby talk to the screen and said hello to our sweet boy and smiled at the cute things he would do. She didn't ignore or not document his special needs, but she didn't speak only of his differences. She treated him like the sweet babe he was. I adore that staff. That staff made our four days what it was. They made it beautiful. God shined His spirit down on that place so that we may see His blessings while we felt the pain. We were allowed to be as happy as we were sad. I have a vision and a mission to give back to that unit in memory of Jack and in honor of the staff. God hasn't placed the specifics in our hearts yet, but we know it'll come. 

-RECEIVING LINE: So many times in my grieving I have wanted to hide in a hole to feel safe and I was worried having a receiving line would be too much for me to bare. However, it did not feel that way at all. Quite the opposite. All those hugs and tears made me so proud of my boy and my family and friends. I encourage others to consider an open service or even open grieving. (Such a this.) The response and support can be such a comfort during an empty time. 

Picking Up 'Jack' From the Funeral Home:
This is not a topic Im comfortable talking in detail about yet. Id love other angel mommies to feel free to reach out to me if they need to discuss this with someone. I CAN say the urn was beautiful and my husband and I went together. I held the urn upon my lap. It was horrid and emotional. Not how any parents should have to take their baby home. Many more feelings that I may or may not decide to confront. (Friend Warning: I do not want to discuss this is person.) My heart is with any other parent that has had to do this. 

Dr C:
We have a wonderful Neo that has answered so many questions and shared so much of his time with us and we really appreciate that. We value his thoughts and opinions. I got an email from him confirming the post birth chromosome test results for Jack's Full Trisomy 13 and he added a note to say that Jack's blood type came back as B-POSITIVE and that perhaps that was a nice message about Jack. ;) 

What to expect from my future blogs??
Oh I don't know... Im sure there will be a fair share of grieving details and remembered Jack moments, mixed in with moments about my older two kids. Id also like to start praying about how God wants me to honor Jack's memory with a project or mission. Id love for you to keep reading and commenting and sharing your life with me as well. xxxxx

Monday, August 5, 2013

Daddy's Words From Jack's Memorial

I want to start today by saying thank you. Thank you to everyone who offered us a word of encouragement, or lifted us up in prayer, sent a card, a meal, or offered to help in any way. I say thank you because that’s all I can do at this time. Those words alone are entirely inadequate to express the gratitude Ifeel because I am truly overwhelmed by the outpouring of love we have experienced over these past months.
In mid-April Rachel and I had a meeting with Patty at Alexandra’s House. We talked about Jack, what we could expect, what worries we had, what preparations we might want to make. One of the things Patty told us was that Pope John Paul said that when the soul is pierced by tragedy what comes out is love. When I heard that I thought, I hope that’s true, because at the time I wasn’t sure how I would be able to cope if and when Jack passed. That thought of love emerging from tragedy stayed with me and I thought about it often until I realized it really was true. I knew it was true because of you. Friends, family, acquaintances, and people we have never met were hurting for us, for Jack, for themselves. And your response to that hurt was love.
So you didn’t just feed us a meal, you didn’t just get us through another day, you gave us the courage to find strength in ourselves because we knew we were not alone. Thank you.
This copy of the New Testament belonged to my great grandfather and it was given to me by my grandmother last summer. I don’t think she gave it to me for any particular reason other than she thought I would like to have it. Inside the front cover she had pasted the Upper Room devotional from the day my great grandfather passed away. The verse for that day was II Timothy 4:7, “I have fought the good fight, I have finished the race, I have kept the faith.” Late Saturday afternoon in the hospital while I was changing Jack he took a deep sigh and threw his fists above his head. This verse came immediately to mind as Jack struck this triumphant pose.
He could have given up easily so many times, and no one would have thought less of him for it. We spent so much time, often every waking hour, focusing on making sure Jack was loved, but in the moment I didn’t realize that he was fighting so hard, not for himself, but for us. And in that way he was an example of Christ’s love for all of us. I am humbled to have been in his presence for those three glorious days, let alone to be able to call him my son.
May we each take Jack’s bravery, selflessness, perseverance, and courage with us every day.

Tuesday, July 30, 2013

A Lifetime

This is my second go at explaining what we went through those four days at the hospital. Version number two is a bit less detailed, especially on the medical side, but my hope is that I'm still able to share our experiences with you. Id like to remind you that these are my memories as I see them today. My feelings and outlook will change as my grief grows and changes. Please be gentle with me, my rambling, and my confusions. I warn you not to read this if death makes you extremely uncomfortable. Know though there was nothing but four days of love for our boy.

 (And as always excuse the fact that I typed this with my thumbs on my phone ;) )

Our Four Day Stay:
Every day was filled with cuddles and love from visitors, especially the grandparents and aunts and uncles. Jack and I both had around the clock nurses to tend to our every whimper. Due to the special and rare nature of our Labor & Delivery unit we were the only patients and so lots of extra love was given. We can never express our gratitude for the level of care we received. 

Day One: that first day Jack was born was the best day of my life by far. My sweet boy was out and alive and cuddled in my arms. My bff photographer took so many hundreds of pictures that I will treasure forever. We just lived in every moment and didn't think of or discuss the next day. Through that first day I couldn't get out of bed after my surgery, but wasn't sore due to the Spinal medicine still being in my system. Jack had a nasal cannula on that first day that was sending forced room air (not oxygen) but we ended up taking it out because we weren't sure it was doing much anyways. Other wise he just had some sticker ports measuring his stats which stayed quiet and consistent all day. 
We decided to go ahead and bring our two older children to meet their baby brother. Our one year old loved him. He smiled and pointed and kept saying "baby" and wanted to touch Jack. Our three year old cuddled on him and even gave him his bath, but I felt in my mommy heart that she was reserved. I feel that she knew something was different. Something was to be worried over. She still loved on him, but it was a more humble quiet love. 
That night we decided to insert a feeding tube and try a very small bit of formula. I went back and forth about if I should pump. I didn't want to start my breast milk if I wasn't going to continue it, but I also had major mommy guilt, I wasn't even comfortable voicing my rationales out loud, but luckily my husband didn't ask questions and just allowed me to do as I saw fit in the moment. So I didn't pump right away. We decided to use the feeding tube and not even attempt oral feeds until we could later be sure Jack's air way was protected. I didn't want to take any chances with aspiration. Jack peed and pooped that first day and so that was wonderful. My family was so sweet with Jack and everyone just loved having him. That first night was a bit rough, but not too bad. We fed him via tube every three hours, but he also didn't sleep very solid. All I would have to do was bounce him a little when he'd wake and sing to him and he'd go right back to sleep. He slept in my arms. Jacks night nurse also came in and held him next to my bed for 45 minutes while daddy and I slept a bit. That was sweet. I didn't want to send him out and he didn't like being set down. So mommy, daddy, and Jack were spoiled rotten and she just stayed there in the dark with us for a few.

Day Two: It was much like day one. Lots of love. Lots of talks and songs and rocking. Our exhaustion levels were through the roof, but we had the rest of our lives to sleep so we did not care. That second night Nana (my step mom) stayed with us so she could take turns holding and calming Jack's fusses so we could try to sleep some. Often daddy and I would sit together in the hospital bed and hold Jack and tell him how proud we were of him. Even when he started to have troubles we just loved on him. Our fighter boy. 

Day Three: Friday morning one of Jack's nurses said maybe we'd like to take him outside. The hospital chapel is beautiful and has a court yard. We were thrilled and hadn't even considered this an option, but loved for Jack to have this opportunity. It was like a hundred degrees outside so we knew it wouldn't be a long term activity, but were ready to allow God's sunshine to poor on our baby. Jack and I were wheeled down by my nurse and his, and my husband and his family came along. Once outside we took a picture or two and daddy picked Jack out of my arms to cuddle. Jack had some trouble breathing and so daddy and I took him inside just us two and sat in the AC chapel in a pew at the foot of the alter and cuddled and prayed for our sweet boy. We wept. Jack cuddled to us so fiercely. He loved being held. We adored each other. Throughout Friday Jack continued to get his feeds and continued to pooper (which he demanded to be changed immediately) but at some point Jack stopped peeing after day one. The doctors think it could either be his kidneys shutting down or his brain not telling them to function. That was a very scary point for me. Even though all of Jack's health behaviors were not 'normal' I had somewhat been living in a dream world and then I was quickly reminded that time may very likely not be on our side. My boy was having health issues. My boy's body was... Failing, I guess. :'( Through each and every decision there were doctors and nurses discussing the options and possibilities. We had also prayed over all interventions and studied greatly before Jacks birth. Jacks post birth ultrasounds were helpful during all choices as well. Jack was constantly held and sang to and talked to by myself and my husband and our parents, our siblings, and friends as well. 
That night Mimi (Husband's mom) stayed with is in the hospital to take turns holding him. It was a harder night, but still considered a blessing. Just thinking about all this breaks me. oh :'( I love him so much. My heart bleeds with pain at the extent of my love. 

Day Four: Throughout Saturday Jack would have troubles more often. It was difficult. It was confusing. But we were with him. We loved him. His family loved him. Jack came back fighting over and over. That night, at 7:02pm, Jack had not been breathing for an especially long time. When we asked the nurse to listen with her stethoscope she said, "Im sorry. I no longer hear a heart beat. I will get his doctor." We all wept, but waited. I just held him and waited for the breathing. I waited for him to be ok again. Surely the nurse was wrong. Surely. I just said, he needs to be checked again. Again please. The doctor came and listened for the longest five seconds of my life and simply said, "Im sorry. He has passed." Daddy prayed. My heart floated up to Heaven to live there with my boy forever. We went back and forth between sobbing and hugging and staring. All of our parents and our siblings hugged and cried with us. It happened right at shift change so jacks and my day and night nurses came in and shared tears and love. Thankfully my mom was able to be there. She had been staying at my house with my two older kids and switching out with the other gparents to come see us. Not so great was that at this time my two older kids (1&3) had come to say hello and were in the waiting room with Nana. We of course didn't bring them in to the room now that Jack had grown his angel wings, but my momma still had to go home with them and attempt to hold it together. I wanted them to feel only happiness and not know of our grief until mommy and daddy could be there to stay and hold them. After Jack's spirit left we kept holding him and organized memory boxes for the grandparents. The nurses came in and did beautiful plaster molds. My dad took care of organizing with the Chaplin on having Jack picked up that night instead of me having to give him to security or the morgue. My dad, the Chaplin, and my and Jacks night nurses arranged for a better goodbye. That night, at midnight, Jack's nurse wrapped him in a warm blanket and Daddy and I loved on him once more and then I handed him to my father. A very loving and proud grandpa. My dad and Jack's very loyal night nurse (mary) then took him themselves down to where the funeral home was waiting to pick him right up. With empty arms, my husband and I showered, took some sleeping pills, and went to bed together where my amazing night nurse (stacie) had pushed two beds into the hospital room. The nurses hung a butterfly on our door so as to ask for privacy for grieving parents. We slept for eight hours, woke, packed our bag, packed Jack's overflowing bag, and together with our parents left the hospital fetal health center room 3, and went home holding two plaster molds, a butterfly, and each other. 

Friday, July 26, 2013

Jack's Birth

Jack's Birth:
After getting the kids settled we headed to the hospital in order to be there to start the induction at ten am. I was 38 weeks 3 days and worried my body may not be quite ready to have a baby, but Jack had stopped growing and my fluid was quite low and so it was best to get him out. When we arrived and were settled my nurse hooked up my belly monitors and started my IV. I have never done well starting an IV. It goes in fine, but as soon as the fluid starts running through my body I get sweaty, dizzy, blood pressure issues, and often throw up. It only lasts a couple of minutes, but isn't enjoyable. However, when this happened to me Jack's heart rate also took a significant drop. Our OB came in and introduced himself and immediately began discussing a CSection. He had concern that if jack didnt even tolerate the IV, how would he do with the induction. We took his recommendation into consideration, but asked to continue with the induction for now. However, before they even did anything Jack had yet another big drop. At that point the OB explained what would happen if we had to move too quickly towards a CS later (I would be knocked out and daddy and Briana (photographer friend) couldn't be there for the birth either). The heart rate drops and fear of no one being present for jack's birth had us agreed to the CSection at that point. (About noon) 
After telling/calling all the grandparents and getting set up the staff came to walk me down. When they stopped my poor husband at the door he was quite worried. He did not know he had to wait a while before he could join me. I look back now and see the adorable pictures of love where he waited and waited and waited for them to get him. It was a very stressful time because we ha no clue how Jack would do or be. It very likely could've been the end right then, right away. 
When I arrived in the OR they put me on a table, covered my shaking body in warm blankets, and gave me the spinal. It hit quick and I laid down. Once numb and covered they brought my honey in. This OR is connected to the Infant resuscitation area so they also had the whole baby team and my photographer on the other side prepping. I would say it took about twenty minutes of strange tuggings before we heard the most beautiful sound in the world. A sound we were not always expecting, but always hoping for. Our sweet tiny baby, Jack, came out with the tiniest kitty cat CRY. The room was thrilled. My husband rushed over to the infant side right after they showed him to me and Jack's team began checking him and helping him. It took over an hour for the doctors to sew me up, but I was not nervous or sad because I could hear my baby giving a great fuss while he was measured and poked. That day 7-17 was by far the very happiest day of my life. I knew it then laying upon that table that God had given me an angel of my very own and granted us with irreplaceable moments of love with this angel. Daddy and Jack's team kept coming over to give me updates or show him to me. He needed a bit of oxygen help at first, but was otherwise handling life outside the womb. Shortly after his birth the staff did a heart echo and head ultrasound to confirm Jack's heart and brain issues. This confirmation was vital to us because it would have a huge part in how we decided to go forward with Jack's intervention now knowing that he did in fact have inoperable or incurable troubles. Jack was born at 1:55pm weighing 5lbs 15oz and 19in. A little after three pm they escorted me to a recovery room and soon after daddy lead the team that brought Jack down too. He was greeted by a happy tearful mob of family as he was rolled down to see momma. They passed him into my arms and it was in those warm arms and in many many others that he spent his next three and a half days. He was only set down to get his poopy diaper changed (which needed done immediately otherwise a fit was sure to be throw!) He was the best cuddler and especially loved being right up against mommy's skin. 
(Specifics about those four days and the day we said goodbye to come soon...) 

Tuesday, July 16, 2013

38 Weeks: It's Time

38 Weeks:

It's Time:
Well, the time has come to hold our sweet boy in person. We already know all there is to know about him. We and many others have bonded with him more than I thought possible with a baby through the womb. His heart and soul are so deeply part of me and who I am. Who I will always be. I am his Mother. I have been for nine months and will be for the rest of forever. God gave me Jack as my birthday surprise and I will forever realize how special and amazing he is. Four months ago they said he wouldn't make it full term. They said he wasn't worth it. That is not for anyone else to decide except God and God has only begun to do Miraculous things thru his creation, Jack Andrew. 

The anxiety levels are sky high. All of Jack's grandparents, aunts, and uncles have arranged their arrival. Plans are in place for big brother and big sister. My hospital bag has been packed for months. Laundry is caught up. We are "ready". Ready to go to the hospital that is. What happens after that, Lord only knows. 

The Nitty Gritty: We go in tomorrow morning (Wednesday) to start induction. Prayers that my body will accept the early induction. My other two were born at 41 weeks and Jack is just past 38. My body isn't ready, but he is my third in just over three years so Im hopeful. I've also never had medical induction so that's new. My hospital does the process a bit slower and differently than a normal H so there's some learning there too - they won't want to do too much at once because of Jack's heart - so it may take a couple of days. CSection is still a possibility if issues arise. We are inducing because Jack's growth has stopped and my fluid is even lower - both signs that decline is happening. It's time. I feel peaceful about that. I can not speak to what happens after we show up, but I know The Lord and so many people are with us in this journey. I appreciate everything from everyone more than you'll ever know. 

Monday, July 8, 2013

37 Weeks: baby weight gain issues, uncomfortable meetings, and communion

37 weeks:

Jack was super low, head down, and still sucking on his little hand this week. His heart rate was in the normal range at 135 and his cord flow was BETTER than it has been in a month. 
He has previously registered between the 20th and 40th percentile with his weight, but today he measured in the 3rd percentile. These U/S weight measurements can be up to 15% off, but even considering that it appears as if Jack has not grown in the last few weeks. This is not good. In addition, my amniotic fluid was quite low today. Fluid gets lower as the baby grows, but the issue here is that mr baby hasn't been growing and even if, it is too low for 37 weeks. 
Lack of growth is a concern because birth weight is a huge factor for survival and this halt can also be a concern for upcoming fetal demise. Now the issue remains on WHEN to take him out. Originally I was eager to wait wait wait because I wanted a higher birth weight (but that isn't working out well) and I didn't want to attempt induction before my body was ready for concern of failure leading to CSection. I am not against CSection, but for the sake of having the most time available to be with Jack after delivery, a vaginal birth is desired. At this point we are monitoring movement throughout this week and going back on Monday to check weight, cord, fluid, and heart rate. If all seems the same we will probably schedule an induction the following week. If things get worse it may be sooner. 

The Other Meetings at 37w:

Sibling Care: 
The hospital offers all sorts of services to help kids with having  a sibling in the hospital or with grief and death. At this point we are choosing not to have our preschooler meet with them, but happily accepted their list of child friendly books and pamphlets. We have yet to discuss any possibilities with our oldest because we still have no idea what may be ahead of her, but we have resources ready. 

The hospice we met with was yet another "just incase" meeting. They listed the variety of services they offer and we left it at "we shall just see what happens" and let you know. (Of course there were a lot more details, but I am already doing my best at ignoring the majority of that conversation for now so I don't feel like reliving it.) 

Chaplin Slash Organ Donor Info: 
Again, another topic of "just incase" and another topic that is difficult to discuss... Basically we have looked into the potential of first off simply donating Jack's cord blood and then the potential of other organ and tissue donations. We wanted to make sure all basis were covered ahead of time. We needed to know details about whether or not Jack's Trisomy disqualifies him and also to know the time crunch necessity details. 

To end on a sweet note - a experience from last weekend... 

My church does communion once a month. I seem to be my most emotional at church. Last weekend as I was preparing for communion I thought to myself that this may be baby Jack's last time taking communion and that I would aim all my heart power at sending the sacredness of the experience straight to my womb towards my boy. Silly I know, but Im finding the end of my pregnancy has caused me to be super sentimental at my worry wondering if these are my last moments with my boy. As I walked up the aisle I prayed for my boy and thanked my God for His sacrifice. When I arrived at the station the server (a stranger) said to me, "the blood of Christ shed for you" then leaned down towards my belly and said, "and for YOU" Thankfully I got turned back towards my seat before I LOST IT. How random of her yet how amazing and special she made me feel. What an amazing God. Yes, the blood of Christ has been shed for me AND my boy and THAT is why I can rest assured knowing that even if my earthly moments with Jack are short that we will have eternity together very soon

Tuesday, June 25, 2013

35+ Weeks: Birth Plan, Neonatal Meeting, Jack, & NICU Tour Gone Bad

35 weeks: 

General Pregnancy Details:
-Still gaining weight :-/ huge belly!
-Sciatic is decent, but keeps me with very little activity
-craving chocolate covered raisins! 
-super swollen already :( 

Writing The Birth Plan @ 34w:
In preparation for Jack's birth we had to come up with our general wishes when considering labor, delivery, medical intervention, medications, treatments, surgeries, etc... So, I started by reading through a dozen different birth plans from other Trisomy moms and highlighting my shared feelings. In addition, Jack's neonatal team emailed me a generic check list to use as well. It made me so sad reading through the other Moms' plans. I just felt so bad that they had to lay out in advance specific ways to help or not 'help' their struggling child. They had to choose how they would intervene or how they would comfort or how they would say goodbye and type it out and then sit and discuss it with strangers - all the while knowing they have no clue how anything will really play out. Sometimes it doesn't hit me that I am having to do these things too. Sometimes I am so outside of my body just going through the motions. I do not visualize ANYTHING about that day. Ever.
I finished the potential plan. First, I wrote out labor and delivery wishes. This was nothing like with my first two. I had so many darn rules about natural this and natural that with them. This time I basically said what would be my preference, but that I am willing to go through anything and everything at any point if Jack needs it. Then I had to write out post birth - what interventions to do if he is needing breathing aid, feeding aid, ect... I also had to write out what may be too much aggressive action and at what point to just stop trying and hand him over to hold. Who on earth knows what'll happen, but we have to be educated and ready.  As ready as possible I guess. Now, before we meet with the neonatal, I will have to sit with my husband and see how he feels about each specific detail. These are such huge ethical decisions for one person to decide, none the less for two people to agree upon, and then both have to live with forever. We are so blessed to have such great communication with one another. Please pray this cohesiveness can continue through our huge life changing decisions. So many what ifs... 

Jack @ 35w:
Baby boy is looking fabulous. His cord flow isn't better, but isn't worse, so we shall carry on and allow him to keep growing as long as possible. They estimate he already weighs five pounds, which is such a blessing. He does lots of practice breathing and hiccups in there. He has always had his hands over his face, but this week we caught him sucking his thumb on ultrasound quite a bit. This is also a very good sign developmentally. 

Neonatal Meeting @ 35w:
This meeting went as well as can be expected. I don't feel like talking much detail, but thought Id quickly update for the sake of updating. 
We met a new Neo Doctor and he was fabulous. Lots of helpful scenarios all the while treating our child like a human. We went over the birth plan and made choices as parents and clarified as a team. The plan is to mostly watch baby Jack and respond accordingly with medical intervention ranging from non invasive to aggressive depending in his needs and signs. 

After the meeting we were going to have a tour of the Nicu. Our sweet Neo rep nurse, who meets us every week, took us thru the doors and we met the desk staff, then we started to walk into the actual NICU where I got about two feet in before I was overcome and turned and bolted out of there. I lost it in an ugly cry sort of way. Our nurse snuck us into a meeting room so I could pull it together, but it was obvious I would not be able to do the tour. I am able to sit through hours of ultrasounds and meetings discussing interventions and death, but I do it all in an out of body sort of way. I think perhaps stepping into that NICU and seeing those babies was too real. Part of it was just seeing a tiny newborn (something Im not interested in at all), part of it was knowing they were all sick, or seeing the ones who had no one at their side, and then part of the breakdown was probably the reality that I may be there sitting in that chair in my very near future. 
The crazy thing is that IF we DO make it to the Nicu that is an odds defying blessing. Most parents would tour a NICU praying to never have to go there. We were touring it for the best case scenario possibility. And apparently I couldn't even handle that. 

Sunday, June 9, 2013

33 Weeks: last regular OB apt and new children's hospital up date

33 weeks:

Last OB Apt:
We had our last appointment with my OB, Dr C, at 31weeks 5 days. Due to our upcoming cord check with the new doc at the children's hospital and her going on a vacation we decided to go ahead and switch our care now. The apt went well and jack's heart rate was great at 152. (When Layla heard his little thump thump she exclaimed in a loud whisper, "baby!" She loves him.)  Dr C was super nice and caring and pretty blunt as usual. ;) I had been going back and forth about what to do if Jack's cord was at critical levels, but he was still under full term. Being pulled out early and without that extra birth weight would be incredibly difficult on his chances, but leaving him in would probably mean a still birth. I had thought that I would set a date of viability with my doctor and that if anything happened before then I would leave him be. I didn't want to end his growing time just so I could meet him alive. We have now decided that today is the point of viability. If he goes into fetal distress from here on out we will pull him out. It is a difficult decision to make and I did not want to be in the business of making life affecting medical decisions one way or another, but especially not for selfish reasons. Dr C helped me see that it is time, he has proven himself, and most importantly - she would pull any other baby at this stage IF the cord was at a critical level and the baby was in distress. And that is all Ive wanted was for him to be treated like any other baby and not discriminated away from medical care.

Cord Check at Children's:
We went to Children's at 32weeks5days and had another ultrasound and met with the head doctor - Dr B. During the ultrasound Jack was a mover, head down, and looking like usual. One difference this time which is a good sign, but not necessarily completely accurate though, is that he was estimated to be over four pounds and in the 42%! Birthweight is a huge helper for Chubbas. (He has chubby cheeks so momma has already given him a nickname ;)) After the U/S we sat down with Dr B and went over our general thoughts, wishes, and questions. He was quite helpful, knowledgable, open, and honest. From this point I will go weekly for OB visits there at the children's hospital. They have a full staff always available, but tend to only have ten births a month between a staff of six OBs. They have only four labor rooms. The delivery room is set up right with the infant resuscitation room so baby never leaves momma and daddy after the delivery. It is all very nice. At this point it is basically watching him and watching me for health, and as long as all keeps up we will keep moving forward week by week. Once it is time to deliver we will use Jack's health as a cue for Vaginal Birth verses CSection and then once delivered we will again use Jack's cues to hopefully guide us toward potential medical interventions -trying to find a balance in his comfort and his medical interventions - all depending on how his little body is doing.

The Kidos:
My baby girl (3y) had her first dance performance this week. She was very proud of herself and enjoyed the stage. One of her little long time friends brought her flowers for after and she felt very special. She is indeed a very special little peanut. <3
Speaking of peanuts... We found out baby Bubby (18m) is allergic to peanuts and eggs after a blood test this week. He got his first Epi Pen. Prayers we never have to use it!

I know I don't always ask and yet I recognize it is more important that anything else, but please keep praying for us. Please pray for us as parents with our anxiety, stress, strength, sleep, patience, hope, decisions... Please pray for our older children to be able to keep days full of smiles and good behavior. Please pray for Jack... For his cord to stay flowing, his continued growth and movement, and for just everything. Please pray for all those around us. Grandparents, family, and friends - to bless them for all they do for us and put up with for us and from us. ;) e Emotionally I am quite stuck and just trying to keep anything and everything shoved down because I know not what to feel or think or be.
(And please pray for a very special person to me who is starting cancer treatments this week. My heart is very much there with her too.)

1. Weekly OB at Children's with an ultrasound every other week
2. General birth plan meeting at Children's with NICU in two weeks

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