Ripping Stitches

My flowers are starting to die. The ones everyone brought me last week to brighten my mood. I had prayed for flowers. I just kept telling Lorenzo that I wanted to bring the beauty and smell of spring into every room in my house because it brought me peace, and happiness, and hope. But now they are starting to droop a bit and the colors aren't as vibrant as they were just days ago. They seem to be on that edge where they cant decide if they are going to cling onto their beauty a bit longer or just give in to the process that has been taking over them since they were first cut, arranged, and delivered here to me. They are beginning to look a lot like me. They mirror my own feelings. The ones were I am on an edge and cant decide if I am going to cling on a bit longer or just give in to the process that is pulling me under. Under to my souls utter destruction.

If last weeks ultrasound was the one where they kindly used a scalpel to cleanly slice open my chest and electroshock my heart and then neatly stitched me back together, then yesterdays ultrasound was the one where they ripped open my healing wounds with their bare hands giving no mind to the damage the tearing would do.

I don't want it to seem like they are all big bullies at the hospital they are really very kind. They have so much compassion and empathy and are so willing to talk and answer as many questions as we have. They are very detailed and patient. They are so kind but that doesn't change the fact that what they are telling me isn't what I want to hear. Its not how they are telling me that is ripping me in two, it is what they are telling me, and the fact that there is not a single thing I or they or anyone else on this earth can do to change the facts.

When they first diagnosed baby with Hydrops and Cystic Hygroma and told us all the reasons that could have caused it they said because of what they could see it was most likely a chromosomal abnormality. One of the other causes would have been a heart defect. Even when the elderly start having heart problems one of the common symptoms is that they will begin to retain fluid in the body and start to swell. They weren't able to see any problems with the Heart last week. Well at yesterdays visit they did see... our baby has a heart defect where the left side of the heart is not functioning properly. It is not fully developed and is smaller and less productive then the right. They still believe that the baby has a chromosomal abnormality too. They also weren't able to definitively find a bladder and if what they found was a bladder it was much too small which meant that it wasn't being used, the baby should be urinating already. That was a big contributor to the fact that the baby doesn't have any fluid around it in the sack(not sure I mentioned that in previous post but there is no amniotic fluid surrounding the baby)... The amniotic fluid around the baby is what the baby uses to practice breathing, it coats the inside of the baby's lungs and helps to develop them. Well if the baby never practices using its lungs and if there is no fluid coating the lungs when it is born they will instantly collapse and the baby will never take its first breath.

Basically if A is hydrops and B is cystic hygroma and C is the heart defect and D is the lack of functioning kidneys and bladder and if E is never developing functioning lungs then ... if A didn't kill the baby then B would probably kill the baby and if B didn't then C probably would and if C didn't then D probably would and if D didn't then E most definitely would.... any one of these problems could be potentially fatal to any child but our baby has all of them.

The doctor said that they would probably give the baby a week or two before the heart would just stop beating. They said I could still run some test if I wanted, if that would make the decision to induce labor now easier with a definitive answer. I could just wait and see what happens because they didn't think it would be much longer now. We could come up with a game plan so that if the baby does continue to live that by point x in the pregnancy we would induce because it would be easier on my body to deliver a baby that wasn't term... aka why put your body through pushing out an 8 lbs baby when its not going to do the baby any good.... If we do decide to just wait and let nature take its course I would be put on high risk and be monitored quite frequently because I could develop a condition know as mirror syndrome where my body would begin to mirror that which is happening to my baby, I would start to retain fluid and basically develop a form of toxemia.
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Where do I even begin?!?!?!

I am ANGRY! at this point as I am leaving the dr office I am so incredible angry. Im not angry at the drs or angry at the world or angry at my body or even angry at God... but I am so so so angry! im so mad! Why? Why? why any more things wrong. Why do I have to wake up still battling my problems with HG and take two medications a day and still feel like vomiting every single moment of every day? Why if its for nothing! I can barely stand being as sick as I am knowing im going to get something out of it at the end, there are still moments when its so hard that I cry out that I cant to it anymore and that's when I was under the impression I was going to cuddle my sweet little baby in just a few months time..... Now what? Why wake up every day wishing I could just die for NOTHING! Why is this happening! Don't I go through enough and sacrifice enough just to bring these sweet little spirits here to earth! Haven't I proven enough that I would do ANYHING to bring these babies here! I would do ANYTHING!! Anything........ anything..... But there is nothing! I have nothing....

What can I even bargain with the Lord? I feel like a child who has gone into the cookie jar to take to her father in hopes of buttering him up to give her some huge gift that she wants..... All the while HE is the one that owns the cookie jar, who made the cookie, who bought the items to make the cookie.... all the while I am bringing him what is already his in an attempt to what??? exchange with the lord!?! I have nothing that he doesn't already have.... he owns everything. he owns my very soul and I have already given him my devotion for all of my days so what then do I have left to plead my cause.

Its not like what I found out at the doctors is really going to change much. It doesn't make it any worse really... my baby is dying as much this week as it was last week. I guess it was just the salt in an old wound.

What am I supposed to do now?

Honestly what am I supposed to DO? How am I supposed to feel? What do I say to my children when they ask if the baby is still sick? How do I respond when they kiss my belly and say love you baby or when they pray for baby to get better in every one of their prayers. What am I supposed to say to myself when my head and my heart cry out "Is there no hope then"? What am I preparing for now? Do I cling to the chance of a miracle? Do I prepare mentally for the next dr visit when I go in and they cant find a heartbeat? Do I keep waking up everyday vomiting and going about feeling like every cell in my body is dying to sustain a body that will never come to be? What am I supposed to DO?

I still feel this baby moving inside of me! It is still with me! It is still alive! As if by some crewel fate I must be tricked into thinking all is well.... No one understands... no one gets it... MY BABY is in there. with me more then any other person is with me... and when I lay awake alone at night crying into my pillow, my baby is there to keep me company... how could something that is so real and so close be SO very far away? How is it I will hold this child in my womb but may never hold it in my arms? How does a heart ever heal!?!

D&C 121:7 and 8 read.. My {daughter}, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; and then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes....

Do I really believe there is a God in heaven? Do I really believe that there is an after life? Do I really believe that God loves me? Would he really care about me? Am I going to "endure it well"?
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 I guess yes is all that I can say... my faith feel so weak right now? It feels so thin and frail. But I know there is a God in Heaven . and if there is a God in heaven then he is perfect. and if he is perfect then he loves me as much as I love my baby. and if he loves me he will be there when my baby returns home to him... and he will be there when I fall apart... and he will be there to hug me when I finally make it to the other side. Because one of these is true they must all be true... my faith maybe thin and it may be frail but it is true!

If I believe in God then I must believe that he has given his children use of his power through the works of the priesthood. And I believe with all my heart that the priesthood is the power of God.... do you get it? The very Power of God! I must cling to that faith that I was blessed through the power of God. I Was Not blessed to be relieved of this trial. I Was Not blessed that my child would be healed. I Was Not blessed that my child would ever live a day outside of my womb... But I Was blessed that I would get a chance to raise this baby, among with other miracles. I was blessed that I would know that there is a God in heaven and that he is mindful of me and my baby and that he loves me. and I do!

So what do I DO now... I don't really know.... but I found comfort in this song... I hope you listen to it all the way through and you will know better how I feel.. this couple was pregnant and the baby was diagnosed "incompatible to live" whatever that means... it seems similar.... they chose to continue with the pregnancy and wrote this song as an outcome...  

https://youtu.be/Joid0xTI-Wk

So little angel baby, here is to 20 weeks. I have no idea how long I will get with you but I will carry you while your heart beats here. and praise the one who has chosen me to be the one to carry you. 

Bringing souls unto Christ

This week...... oh this week..... Lorenzo and I sat in Sunday school today and the teacher asked if we remember what the lesson was on last week. We just started at each other! We could remember of course but how could that have only been a week ago? It was a lifetime ago... It was another life ago... We are now different people all within the short span of a week.

The days since we received our Priesthood blessing we have felt all consuming peace! That very night I and every member in my family slept all night long. ALL NIGHT! This in and of itself is a miracle. I myself have woken up every night for the past few months and not been able to get back to sleep for hours just because I am so uncomfortable or my mind is racing. It has just become my new normal. There were angels abiding with us all through the night! And the next morning I didn't not wake with despair like I had the previous mornings. I did not tremble when Lorenzo left for work like I had the day before. I felt the strength of those unseen spirits with me... I physically as much as spiritually felt them around me. Our house had been transformed to be a place of peace, a temple, and a heaven on earth. I can actually say that I felt happy when I woke and as I went about my day, and the days to follow.

The hardest part we have been through lately is feeling bad for other people around us. We wish so much that they could feel the peace and hope that we feel. We were promised miracles, maybe not the miracle we want (our baby living a full life) but we were blessed with miracles non the less and we feel without a shadow of a doubt that we will see the hand of God work in our lives through this baby. Others that weren't there have lost sight of the fact that there is still hope. We often get questions that just make it seem like everyone has given up. I guess its not so much what people say but the way that they say it, as if there is no hope, as if this story is finished. I wish they could lean on our faith.

The other day as I was standing in the shower feeling the weight of those people on my shoulders. I don't know about you but sometimes the shower is the best place to just let it all out and have yourself a good cry. Maybe its just because as a mother its the only time and place I actually get to be alone and if I put my head under the water I can mostly drowned out the knocking at the door also. As I stood there I began a conversation with my Father in Heaven. I knew that he wasn't going to take this trial away from us. I also felt I knew that we were chosen long ago to go through this experience together. My pleas were not for me but for them and anyone else for that matter.

Dear Lord I already know I will serve thee all my life.... no matter the outcome Father I will praise thee all my days. But if I must suffer this trial, please let it not be in vain. Whatever the outcome please let it be one that will bring the most souls unto thee...

See I feel that is really our mission through this trial. I already know that it will strengthen our testimonies however I would and will serve my God no matter what happens. No matter if I ever get to see my baby take a breath, or open its eyes, or meet its siblings, or smile, or laugh, or cry, or call me mommy, ,no matter if all I ever get to feel is those little pokes and prods that come from deep within my belly, no matter the ending of this temporal story I will forever praise my father in heaven just for the chance to come so close to perfection. My only prayer now is that whatever the outcome, the lord may use the situation I am going through to strengthen the testimonies of others.

Don't get me wrong I want with all my soul for this baby to LIVE! live a full life. But if that is not what is to come of this I don't want this pain to be lost to just me. Sadly with my earthly eyes and knowledge I couldn't know what would be a better testament to the fact that there is a God in Heaven and that he loves us. I know that God is all knowing though and I have faith that he wants the same thing that I do.

Baby's First Preisthood Blessing

This is the true morning after.... technically yesterday was the first morning after, as in the morning after the devastating news however yesterday we spent the day distracting ourselves with loads of fun! The night before we had a family movie night and snuggled up in the couch with some popcorn. The next morning we went up to Ogden, Ut. and went to the Hill Airforce base Museum, ate at a funky little café with yummy stuffed burgers, went and played for hours at the Treehouse Museum and just enjoyed our kidos. Then Lorenzo and I went to the temple and were able to do some Sealing Ordinances. It was a beautiful, busy, distracting day! Just what we all needed. However the day had to come to a close and as it did my heart began to ache. I truly did not want to go to bed because that meant the next day would be here and real life would start over again.

Lorenzo would be going back to work, Korlen back to school. Its my week for preschool and so I would be having children over to my house for that... though that I was glad for, a little distraction. But all in all everyone would be going back to their real lives, living life as if mine was not over here falling apart. The calls had been made and the condolences had been given and tomorrow was going to be just another day for every, everyone except our little family.

I trembled this morning as Lorenzo and I were saying our goodbyes. I cant remember the last time I used such force to hold him as tight as I could in an embrace. I couldn't let go. He hadn't left my side since we heard the news and I couldn't let him leave me know. I was filled with terror of the pain I knew was about to come. I knew it was going to hurt. Without Lorenzo I had to.... feel. he is like my Novocain to numb the pain and he was leaving me for hours. While with him I didn't have to be strong, I could fall apart and the knowledge that I could be weak strengthened me. But knowing that I had to keep it together while he was away made me feel much much less secure.

As he left I told him don't be supprised if I don't do a thing to the house or take care of your kid while you are gone.. his response was what his response is on most days "as long as they are alive when I get back I think that probably good enough". Given the circumstance that was heartbreaking. And at the realization we both cried.

I had quite a few visitors this morning. Its amazing how their sincerity is so obvious! Those come to comfort and those who come just to make them feel better about themselves. They come just so they can sleep better at night, as if they have some kind of moral checklist they feel so accomplished to fulfil even if its for the wrong reasons. "Go visit someone in need, Check! Oh good now at last I can say did something to ease my own conscience". Like I said you can tell their sincerity and true intent so immediately!

We also had our house cleaned by the bishop and family which was such a blessing! I have had so many people tell me " let me know what I can do to help" so I gave them an opportunity to make good on their word and see who would really "help" I posted on the ward FB page that I would love for someone to come clean my kitchen and within 20 min the bishops family was here cleaning away! My friend from preschool group also stayed to help clean and help play with the kids, and we had a sister bring us dinner tonight. I am so grateful for people like them.... There are sayers and then there are doers. I have been blessed to have so very many supportive doers in my life that don't just throw a line out there about coming if needed but actually show up roll up their sleeves and get to work.. We feel so blessed for all these saints in our life, we wish there was some way to ever repay them but all we can do is commit to being Do-ers ourselves! 

The Bishop requested to come back over tonight with one of his counselors and I was sure that since we had yet to receive blessings he wanted to come council with us and then offer that to both of us. His words were kind. And we were able to talk for a while about the baby and my previous post and the gospel. He counseled that there was place for us to feel sadness, that it was a part of life and a part of healing, and that some sadness's last a lifetime. It was nice to just talk for a min with no expectations.

Lorenzo received a blessing that I think brought him great comfort about being able to handle his position as leader and comforter and provider for our family. I know he has his own way of dealing with this but I hope he lets himself be as vulnerable as he does strong. He seems to be coping well though.

My blessing was a very beautiful one. It was a blessing of healing and it was a powerful one. I was blessed to remember that the lord is all powerful that he created the heavens and the earth and that at the glance of his eye all things could disappear. He has the ability to manipulate all matter and change all circumstances. I was then blessed with a healing blessing telling me that this baby would continue to grow and thrive while in the womb and that strange things would take place so much so that the doctors would be baffled, but that we wouldn't know that it was the workings of the Lord, God almighty, our Father. There were a lot of things that were specifically outlined both for me and for little one. There was so much said that left little doubt that the lord was not only mindful of us but very involved with what was to come.

I feel edified. I have felt like our story with this child is not over... it is not set in stone. I have felt very strongly that miracles are possible and that changes would be made in this child's life. After this blessing I felt at peace. In no way do I feel that it was a promise that everything will be hunky dory, nor am I even positive that my baby will live to take its first breath. However, I know that there is yet miracles to take place and that there is much left yet to this story unwritten. I will draw on the peace on comfort that it brings for a long time to come.

When ultrasounds go devistatingly wrong

You can get on pinterest and find a "How to" or "5 step program" or advice on just about any circumstance in life except when the circumstance is this devastating..... Lorenzo and I just stood there wondering "what are we even supposed to do right now?" It was like we were ants following our sent and then a leaf from heaven came and landed right in our way and just like that, POOF, we were lost... in the movie A Bugs Life there was someone to come and direct them, quite comically around the leaf. And here we were sobbing in each others arms outside of the Women's Clinic at IMC and there was no one to show us what had happened to our path, no one to direct our feet to the next step and make it feel like our lives had purpose again.

Monday morning I woke up and something told me my life would be changing forever that day. I even snapped a photo of Evelett and I and captioned it "the day that would change our lives."

 See we were going to our baby's big ultrasound! For some reason I was so nervous! I was sweating like crazy and my heart was racing... I figured it was because, even though id been through this 3 times before, this was my last baby! what was it gonna be??? Was Evelett going to be our only little princess or would she be getting a baby sister! So much excitement. As in the past, we let our older children come with us, we really like to make this a family event because this is so exciting for everyone. plus I feel like it helps for these young kids to SEE how we get the pic of baby... I just think it helps them understand that there really is a baby inside mommys belly and not just the extra ice cream Ive been sneaking lately!

So we get to the ultrasound and the tech start doing what the tech does and im trying to explain to the kids what she is doing but she starts moving faster and im making jokes that it doesn't look much like a baby to me so im glad she knows what shes doing to which she nervously snickers. And then everything changes. She stops and tells us " you know I hate to be the one to tell you this but there seems to be some abnormalities with baby and I'm not sure what all I'm seeing, this is like my worst nightmare to have to tell you this but we have to send you to the specialist at a bigger hospital to be sure" she then nervously stood up and said that she needed to go get ahold of my dr.... everything from there was a fast blur but basically she was nervous couldn't look at me and was rushing... my dr was in surgery so she sent me home saying that he would call me and they would set up an apt with the specialist asap. and that was it...she felt so bad at this point that she awkwardly gave me a hung and just whispered "i am so sorry sweetie"... they sent me and my very confused and disappointed brood out the door. And that when it hit me that our society has become so confused about the real reason for that 20 week ultrasound.... yeah its fun to find out the gender but the health of the baby is the real reason... with all these gender reveal parties no one remembers that.

I then got to sit around and stew over the phone for 5 hrs waiting for the dr to call. When he finally did he was really honest with me. He told me things look serious and that he wanted me to get in as soon as possible. He also told me what was going on, what they thought it was, and what the names were... our apt was set for 22 hrs later! it was the longest night of Lorenzo and my life! We were so scared. We did some research on what the dr said it might be and things look really discouraging.

After the longest wait time of my life we finally went back to our ultrasound with the specialized tech. and after he did his scan and then the high risk dr came in and talked to us this is what we Found out..

** Our baby has a condition called Hydrops and Cystic Hygroma. Hydrops is a build up of fluid in more then one area of the body. Our baby has a large amount of fluid built up in its abdomen, around its heart, and in its chest cavity. Cystic Hygroma is also a build up of fluid that is built up in the neck, our baby's neck sac is larger then the baby's head and appears to be almost as large as the baby's body.

Gah!! so what does that mean right. What causes that? what do we do now?

well basically that mean bad!

There was about 5 different things that could have caused it but most likely it is a gynetic syndrom much like down syndrome. However where down syndrome is a chromosomal abnormality in a smaller chromosome the problems that would effect this would be a larger chromosome and therefor cause more problems. they could run a bunch of test that would tell us what cause it however non of those test would help this baby it would only allow us to know if this would effect any future pregnancies.

So what now?

* there is no cure......... what? no cure......
* there is no treatment......
* there is no survival rate..... WHAT????
The extra fluid will put too much strain on the heart and it will eventually stop beating.
Survival outside of the womb is nonexistent
Basically your baby will die and you will not be bringing this baby home from the hospital...Ever!

so what do we do now...
option 1 wait till baby's heart gives out and my body will start labor on its own
option 2 wait till baby's heart gives out and if my body hasn't started labor they will start labor
option 3 terminate pregnancy
option 4 start preterm labor so that we can have the opportunity to hold the baby while it is still alive and snuggle it before it dies
option 5 this plays out like a normal pregnancy and I will go till term and then after the baby is born we will enjoy every precious moment we are granted.
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Dear lord in heaven... how is this your plan for us... how is this real life... how dear father am I supposed to keep on living every day as if nothing has changed... how am I supposed to wake up every single moment and go to bed every single night wondering if my baby is still alive and wondering how much longer it will be in there and wondering if I will ever hear its first cry or if it will be snuffed out before that blessed moment happens... how am I supposed to respond to the sweet old ladies in the grocery store that ask me how far along and what I'm having and how excited I must be... father, how am I supposed to tell my children that baby will not be coming home with us... father give me strength.

I was filled with such peace, such understanding as we talked about everything that was going on and everything that would be expected. I felt the hands of the lord with me, holding me, easing my pain and sorrow. However I must be honest I broke... I broke when we started talking about delivery the baby.... alive or dead this baby will be coming out of my body... I will be delivering this child one way or another. I will still go through the pains and trauma of bringing a life into the world weather or not that life will last a moment or an hour or a day. I will be giving birth to this baby and then I will be going home broken body and broken hearted. I will still have my sleepless night but to nurse my wounds and not nurse my baby. I will hear crying day and night but the sounds will be coming from me not from my newborn. that is when I broke.

" There are no true endings.... Only everlasting beginnings"- Dieter F Uchtdorf

This is Just   So      Sad   
its so sad and so hard. waiting for the train to come slam into you. you cant move, cant turn around and run away, just wait for the inevitable to plow over you. It is so sad!

But I have found joy still. I have reasons still to see the sunshine. The sound of my children laughing and the touch of my husbands strong embrace. There is still life, and love, and hope. We know that we will see this baby again one day and we know we will have the opportunity to raise this baby weather here on earth or in the hereafter. This baby was ours from the moment it was created.... this sweet little spirit is so special! I know it, I can feel it already. I will be the best mother I can be while it is still with me and every day after I will be even better so that I may have the chance to be reunited and raise this sweet baby of mine....
We never did find out the gender... poor baby is so swollen and there is hardly and fluid around it that there was no way to even see. but that's ok... anymore it doesn't really matter anyways.

Though the doc didn't give us any reason to hope there is always room for hope... there have been a few miracle babies that I have read about online... sometimes the problems look much bigger on screen then they really are... sometimes the swelling and fluid just goes down and sort of resolves itself... a lot of babies survive with one or the other condition its just hard to find any good news when they are both together... But we still have hope! We have faith in the Lord Jesus Christ and know that he has a plan for us and for this little baby.! I always used to say I knew nothing like this would ever happen to me because I am not strong enough to handle it and the lord doesn't give you anything you cant handle. im leaning very quickly just how wrong I am in that.... the lord does give you more then you can handle..... much much more then you are ever capable of handling on your own. only when you lean on him will you be saved from complete destruction. only through his grace are you ever made capable of bearing the cross you have in this life...

im sure many of you will want to tell me how sorry you are... but don't..... don't be sorry..... I AM NOT sorry... I would do this a thousand times over again because I know how important this child is. this was our mission in life to be this childs parents and to give it a body... maybe not a working one but it will be perfected one day. You can say that its sad because it is... its really sad... ps ill know who actually read this whole long post because of who says "im so sorry" vs who says "i am so sad with you"  lol so be warned

your prays will be greatly appreciated and we are trying to stay as positive as possible around our children so please be careful what you say around them... they are so very receptive...

loving you all and looking to lean on you when my heart does break in the future to come.