Thursday, August 24, 2017

4 months, 4 weeks and eternity part 3

On Wednesday, we were discharged to go home and while I was glad to be out of the hospital, it brought a finality with is that was difficult. We also had to explain it all to Wyatt. He was there the night we had Noah but his main concern was the IV in mommy's arm and if it hurt. He is definitely a momma's boy and I'm okay with that. My mom brought him back to our house as he had been staying with my parents. He had made me some pictures and was showing those to me and telling me all the things he got to do at grammy's house. We sat with him on the couch and gave him the bear we made for him with Noah's heartbeat in it. We explained how Noah was not in mommy's tummy anymore and is in heaven with Jesus. We told him how he could always hear Noah's heartbeat in his bear anytime he wanted. He kept telling me it was okay and that we could bring Noah home another day. I had to tell him Noah was NEVER going to be able to come home and he just cried and cried. Trying to wrap his head around what forever means and understanding Noah won't ever be able to sleep in his bed like he prayed for and everything that means to a 4 year old was hard. I just held him for a long time and cried with him. My sweet little Wyatt was trying to comfort me and patting my face saying it was okay because we could always hear Noah's heartbeat with his bear. It melted my heart and broke it all at the same time. It's such a big thing for such a little one to comprehend.

We talk about Noah a lot and Wyatt sleeps with his bear every night. He named him Freddy. There was a bear in the floral arrangement on Noah's casket and Wyatt calls that "comfy bear". Every night he sleeps with both of them and I often hear him playing Noah's heartbeat over the monitor while he's laying in bed.

We had a graveside service one week later on July 31st for family and a few close friends. The day prior to that, both sets of our parents went with us to see Noah one last time. I think I cried the most at this point. More than I did at Noah's birth and more than I did when we first found out about Noah's diagnosis. I was so broken and hurt. I held his hand and he was so cold. I know it was just his body and he's no longer there but at that point, it didn't make it any easier. Coming to terms with the fact I would never see his chubby cheeks, his nose and lips that looked just like Wyatt's or know the color of his eyes has been beyond heartbreaking. This was the last time I would ever see his body here on earth.

Noah was buried the next day in a gown made from my very own wedding dress. We were never able to dress him in the outfit I had made for him as he was just too fragile after he was born. We were able to get some pictures of him with a hat embroidered with his name on and the same mickey mouse hat Wyatt wore the day he came home from the NICU but the only thing Noah ever wore was a piece of my wedding dress. The symbolism of that is beautiful to me. His daddy and I promised each other 8 years ago we'd be there for each other no matter what and our promise is the same for each of our children. That dress represents those things just like a rainbow is a sign of God's promises to us.

That evening we celebrated Noah with over 100 friends and family who came to our balloon release for him. I was afraid 5 people would show up but I should have known better. I was blown away by the number of people who came. It was not only our friends but friends of our family members as well. Our pastor spoke for a few minutes and then had a few people gather around us to pray while everyone else extended hands toward us as they prayed from their seats. It was such a beautiful representation of God's love. These people (many of you that are even reading this) are the very people who have walked beside us for 4 months. They are the ones who have hugged us and prayed for us. They have brought us meals and filled our freezer. They have donated money and time and offered to clean our house and mow our lawn. They are the ones who continue to carry us through the most difficult season of our lives. This is our tribe and it reaches farther that I could have imagined. There are no words to convey our gratitude.

Not only were there many who came that night but many who could not and did their own balloon release in honor of Noah. Part of our Herbalife family near Houston, friends from coast to coast and one even in front of Cinderella's Castle at Walt Disney World. There were candles lit by a close group of friends of mine who live all over the US. The list goes on and on.

Outside of praying for a miracle for Noah, I had prayed his life would be meaningful and ultimately would bring others to know Jesus. I have no doubt both of those will happen. There are hundreds and maybe even thousands of people that already know Noah's story. That is not by coincidence. My prayer remains that through our faith and through Noah's life, someone or many someone's will come to know Jesus. I can think of no greater thing to happen.

If you don't know my savior and how you can know you'll go to heaven, please let me tell you about it. Our faith has brought us through this and we KNOW without a shadow of a doubt that Noah is now whole and in heaven. We also know that because Jesus died on the cross for our sins and we have accepted him into our hearts that we will one day see Jesus and our precious Noah again and for that we are eternally grateful.

Noah James Deets

July 24, 2017

3 pounds 2 ounces

15 inches

I will hold you in my heart until I can hold you in my arms. We love you our precious son.

4 months, 4 weeks and eternity part 2

My c-section was scheduled for 7 that evening but as it turns out that wasn't going to happen. My doctor was at his other hospital for a delivery. So, we waited....and waited....and waited. We then found out that there was an emergency c-section at my hospital so even though my doctor was on the way, we still had to wait....and wait some more. Keeping Wyatt entertained that long and WAY past his bed time was a challenge to say the least. Everyone got something to eat during the waiting period and the birth photographer we had brought back a bag full of goodies for Wyatt to help entertain them which was so thoughtful and sweet.

Finally, at about 10 pm, they took me back to the OR while James and Ryley (my doula) waited outside in their awesome "scrubs" until they could come in too. It was a little strange and unnerving to be in the OR completely awake and aware of everything. By the time I was in the OR for all of the other surgeries I've ever had, I was already pretty loopy. That was not the case this time and that was a little frightening. However, again, I had some amazing nurses and anesthesiologist. They walked me through everything to help calm my nerves. I discussed anxiety meds with the anesthesiologist. I was happy to get the spinal in because then I didn't feel so cold (seriously the OR is freezing!).

Once They had me all prepped, James and Ryley came in and I was so grateful they were there. At 10:54 p.m. Noah James Deets was born. Our nurse put a hat on him and wrapped him up for us then gave him to James. I was having a hard time seeing his face through the tears and I was trying so hard not to cry because that just makes your stomach move and I figured that can't possibly be good during abdominal surgery. Then I started feeling a heaviness on my chest and I'm pretty sure Ryley could see in my face something was wrong because she asked me if I was okay. I told her I felt like I was having a hard time breathing and she relayed that to the anesthesiologist who apparently was watching my monitor pretty closely at that point already. He gave me something in my IV and then all was well again. Before I knew it we were being wheeled back to our room through the hallway of our waiting family with tears streaming down their faces.

Ryley took Noah's footprints and then each of our family members held our precious Noah. It was difficult and I was the last to hold him as I was shaking pretty badly after surgery and was afraid of dropping him. It was close to midnight at this point so, we had my parents come in first so they could hold Noah and then go home to get Wyatt in bed. Wyatt never got to see his brother. It was a choice we made after Noah was born. Noah had been gone probably closer to 48 hours before he was born so he was physically in bad shape already. It was just too much for a 4 year old so we made the difficult decision to not let Wyatt see him. While I don't regret that decision, I so very much wish Noah had been born alive so Wyatt could meet him if only for a minute. This is probably one of the hardest parts for me.

Our family all left and then it was just us. James, Noah and me. We did not keep him long. I will not go into details but it was just time to let him go. Our nurse came in to weigh and measure him about 1 a.m. and we told her it was okay to take him then. She went ahead and weighed him in our room and that was the first time we saw him without his hat on. That was difficult. As a mother, you want to fix the hard things and the bad things for your kids. You want to kiss their boo boo's and check for monsters under the bed but I couldn't do that for Noah. I couldn't fix him. I would have done anything if I could have to make it better. Our amazingly compassionate nurse Sibi weighed Noah and measured him, then wrapped him up in a blanket, put him on her shoulder and walked out with him. He was now gone physically from me forever. I would never again feel him tiny feet in my ribs, or feel him stretch his legs or his elbows move like he was kung foo fighting. I would never again hold his tiny 3 pound 2 ounce body in my arms and oh how they ache to hold him again. It was done. It was over. Forever.

Sibi brought us turkey sandwiches from the fridge because what else do you eat at 1:30 in the morning after you haven't eaten in 16 hours when nothing is open? She was gone for awhile and then came back and had done some molds of Noah's hands and feet and some hand and footprints as well. I was so grateful she took the time to do them. We were able to get one footprint after birth but Noah's little hands weren't cooperating for us to get his handprints but Sibi was able to do them for us.

We did our best to get some sleep after that. At 4 a.m. my nurse came in to have me sign some papers as the funeral home had come to pick up Noah. I finally had to ask for something to help me sleep. I was emotionally spent, I was itching from one of the meds they gave me during my surgery and I slept about 2 hours the night before. I was exhausted. I was able to get about 2 hours of sleep before my nurse had to make me get out of bed to stand up. By 8 in the morning I was still very itchy so my day nurse gave me something to help with that. It knocked me out from 8-1 which was kind of nice honestly. We got a laugh out of that though because she gave me a VERY VERY little dose and it knocked me out so long. She was like, "You don't take anything ever do you?". I told her nope and James probably rolled his eyes at me because he's always getting on to me if I have a headache or something and won't take anything for it. At least when I do take something it works overly well I guess:)

I finally was able to get out of bed since I was more coherent and my mom brushed my hair for me. I'm sure it was a wreck and I didn't even think about it. Our family came to visit and our pastors again and we had a stream of people come in and out until Wednesday evening when I was discharged to go home. I went 12 hours without pains meds (long story - not the hospitals fault). I don't recommend doing that. We had the best staff I could have asked for that were so caring and respectful to us during everything. They were so very kind and just amazing. God placed the exact right people there for us. To be continued....

4 months, 4 weeks and eternity Part 1

It has been 4, almost 5 months now since we were given Noah's diagnosis. It has been one month since we said goodbye. We are promised eternity with him.

On July 24, 2017 at 10:54 pm, Noah James was born into the arms of Jesus. We knew how this would ultimately end but it did not prepare me for how things would go. Two days before Noah was born, I was sitting on the couch with Wyatt and Noah was moving around in a way I had never felt him before. I remember putting my hand on my belly and talking to him telling him it was okay and to calm down. This was the last time I felt him move. I don't know if he was gone right then or shortly after but I can tell you by the next morning I knew in my heart he was gone.

I got in the shower and got ready to run my errands for the day. I laid on the bed on all fours and every way I could to try and get Noah to move. I was in tears and James came in and just hugged me. I told him I hadn't felt him move since yesterday morning. I drank cold water and never could get him to move again. I ran my errands as best as I could, came home and packed hospital bags, did laundry etc. I had a doctor appointment Monday morning and in my heart, I knew what was going to happen and I knew we wouldn't be coming home from that appointment.

My heart was unsettled that night. I didn't sleep well or much at all. I was trying to hold it together as I was texting my doula. I was too afraid to say the words to her that I thought he was gone already but I later found out she already had a feeling herself (funny how God works, huh?). We went in for our appointment Monday morning and did the usual check up. The nurse could not find Noah's heartbeat like they usually could. She found mine and told me that was Noah's. I think she honestly was trying not to make me panic but I knew. I already knew.

The doctor came in and again could not find Noah's heartbeat. He had us go down to the ultrasound room. We had to wait for the machine to warm up. James came to hold my hand while the doctor did the sonogram. After what felt like forever he told us there was no heartbeat. All the emotions I had been trying to hold together since Sunday morning came pouring out. Noah was already in heaven. I wanted to badly to see him alive if only for a few minutes but that wasn't God's plan.

We originally thought we would go in for an induction but after discussing things with my doctor, we all chose the safest option for me which was a c-section. Due to the fertility surgeries I had last summer I was already at an increased risk for uterine rupture. Having pitocin for an induction raises that risk quite a bit so we chose the safer option. James and I sat in the room as my doctor called the hospital to make arrangements. All the beds were full so, we were sent home for awhile to wait as they discharged patients.

We made phone calls to our family and my doula. By the time we arrived back home our family was all already at our house waiting for us. My mom had been watching Wyatt as we no longer took him to appointments with us. She had our things ready to go and packed Wyatt's bag for me. We hugged our family and cried a lot of tears. Wyatt was so excited to have his cousins there to play but was trying to figure out why we were all crying again. He kept on playing which is what I would have wanted him to do anyway. The hard part for him would come later.

Our pastor and another staff member from our church came to pray with us. I remember sitting in the living room talking with him and he asked us what we thought God had shown us the most through all of this. Faith over Fear. For me, that is the biggest thing I've learned. I had absolutely ZERO control over everything. There was nothing I could have done to change the outcome or to even prevent it from happening in the first place. NOTHING. You either learn to have faith no matter what and overcome every fear you have about it all or you go down a path of self destruction. Was it easy? No. Were there times I was angry/sad/mad and even questioned God. Yup. Every time that little voice of doubt or fear tried to make room in my heart, I turned to the one thing that spoke truth to my heart: my Bible.

After they left, we tried to get Wyatt to take a nap knowing it could be a later night for him. He wasn't having any of it so, I laid down with him for awhile. All I could think about was that was the last time I would ever be able to hold both of my boys here on earth. Wyatt had been praying for months that Noah could come sleep in his bed. That was the best I could do for him.

James and I put our things in the car and drove to the hospital to check in. From the moment we walked into the L&D unit we were greeted with such love. The charge nurse that checked us in was so compassionate and sweet. When she took us to our room she was getting me all set up with my high fashion gown and she asked James how he was doing. He said he was okay and she said, "No, you're not" and gave him a long hug. I wasn't even out of the bathroom from changing before my amazing doula arrived. We all hung out in the room for a bit until family started arriving. I think the nurses just stopped asking who the visitors were for and just told them our room number, ha! We maybe should have mentioned we have a lot of family :)

Monday, July 10, 2017

A long overdue update

I have needed and wanted to write another post for awhile but every time I start, I don't know what to say. How does one go about explaining the day to day life of living with the reality that you will bury a son you never got to know? With both of my miscarriages, we were able to mourn and move on or at least move on in the best way you can after that fairly quickly after we found out about them both. This is so much different. It is MONTHS of grieving. MONTHS of tears. MONTHS of dreading the inevitable just to start grieving all over again when Noah gets here. It's emotionally draining.

We have tried to keep things as normal as we can around here but normal is a relative term. So many things are just not important anymore. The everyday things still have to get done. The grocery shopping, the meal planning, the cooking and cleaning all still needs to be done. Grocery shopping is probably the hardest for me. I just want to get in and out. I don't want to see all the other women with babies and healthy pregnancies. I don't want the cashier to ask me when I'm due. I don't want anyone to ask Wyatt is he's excited to be a big brother. I just want to stay home and not venture out anywhere.

In June we went to Disney and while we had a wonderful time, I had some hard moments. I found myself crying in the middle of one of the biggest stores there. I avoided the section with baby clothes that I once had on my "souvenirs to buy list". It was hot. I was tired and ready to be home. I am glad we went but I am glad we are home too.

Today we had our first sonogram with Noah since his diagnosis. When we found out he has anencephaly, we did not get any pictures of his head or face but one of his arms and one of one of his legs. I didn't know what to expect out of today. I didn't want to sob in my doctors office yet again. My doctor is so wonderful though and so caring. I came with two recording devices today from build a bear. I asked him if we could record Noah's heartbeat to put in teddy bears later on and he let us do that first. He made sure to turn up the machine loud to get the best recording too. He knew I wanted to get some pictures of his face if we could as I had asked him at my last appointment. Noah is much like his brother already and did not want to cooperate. His head is REALLY far down. So my doctor took a long time trying to get all sorts of pictures for us. Then he tilted the table back to see if gravity would help and it did! We got the best picture of Noah's face looking right at us. He's beautiful. It made me love him more and is just even more assurance the right choice was giving him life for as long as possible. He laying transverse right now so his feet are in my right ribs and his head is down toward my left pelvic bone. This also explains why I have a rib on the right side that keeps coming out of place. Thankfully my chiropractor puts it back for me :)

The "bad" news from today (what could be worse really?) is that my fluid levels are high. A fluid level around 26-28 is considered high. My fluid level is 35! So, I now have polyhydramnios. This most certainly means we will be meeting Noah sooner than we'd like. We don't know when that will be. It could be 2 weeks early or 4 weeks early or who knows. I did ask my doctor if he thought I'd have at least two more weeks and he felt pretty confident I did. We have family out of town so, August would be better in that aspect. It's time to pack the hospital bag though.

Packing my bad isn't something I've been able to bring myself to do. It doesn't seem right but it has to be done. The funeral arrangements we have been avoiding can't be avoided any longer. We have some tough things to face in the next couple of weeks to prepare to meet our second son and we just won't ever be ready for that.

I have been amazed at how God has placed the right people in our lives through this right now. I was able to connect with a group here in Dallas of mom's who have had losses in all stages. Through that group I was introduced to a woman who is a bereavement doula. I had no idea they existed but they do. I was able to sit down and have dinner with her last week. She is helping me with a birth plan and some things to create memories with Noah. She is connecting me with a photographer who is going to do maternity photos for me and another who will do birth photos so that we can focus on spending what little time we have with Noah. It has been such a big blessing to have someone guide me through all of that and help me think of things I hadn't thought to do.

Our church family continues to support us and pray for us. I am asked constantly how we can be helped. To be honest, we don't know. The main thing right now is prayer. While we continually pray for a miracle, we also need prayer for guidance as we make decisions on where to bury our son and whether we have a funeral service or something else. There are so many little things we have to make decisions about and they aren't easy conversations to have. Also, please please please pray for Wyatt and his little heart. He has been asking me a lot of questions lately. He gets super sad when I cry. He wants Noah to come sleep in his bed and he prays for that every.single.night. I have explained to him in the best way I know how that Noah will have to go to heaven and live with Jesus because his head is missing some parts. He told me he was going to teach Noah how to be big and strong like he is. We talked a little more about Noah and why he will have to live with Jesus but man is that a hard conversation and it wasn't without tears. Wyatt just hugged me and told me he didn't want me to cry. The next morning he asked me if Grammy and Pa had to go to God too which just broke my heart. He's thinking about Noah and what we've told him and trying to make sense of it all. I've got 30 years on him and can't make sense of it all. As a parent, you want to fix things for your children if you can and this is hard for me because I can't fix it for either one of my sons. There is not a single things I can do but to pray. So, prayer is what we need.

Monday, May 15, 2017

One Month

It's been one month since the anencephaly diagnosis. I can't say much has happened in that time because it hasn't. The shock has worn off a bit but the sadness remains. We had our first follow up visit with my doctor this morning since we found out. We asked a lot of questions and we talked about several things like labor and delivery. I was originally supposed to have a c-section with this baby due to some complications I had during my infertility surgeries last summer. I do get to try to deliver on my own now without a c-section so, that's a little bit of good news.

The grief comes in waves and at times I don't expect it. I didn't shed a tear during Mother's Day or during baby dedication at church but I cried thinking about having to pack a hospital bag for me and not for my son. There is no baby shower this coming weekend like there should be. There is no car seat to install. There is nothing except a huge hole in my heart.

It is hard to describe this kind of grief. I wonder if this is how Mary felt watching Jesus die on the cross. The thing about this kind of grief is while there is a sadness beyond comprehension, there is also joy. When you experience something of this magnitude, it makes you see things differently. Because I know unspeakable sorrow, I also know unspeakable joy.

I won't pretend any part of this is easy because it isn't. Some days are better than others. Part of me wants this part of my life to hurry up and be done with because I want this pain to go away but the other part of me knows that pain will not go away and I want to cling to this time I have with him - our son.

I find myself avoiding public places alone now. I don't want to answer awkward questions to strangers about when I'm due or if we know what we are having. People mean well but it hurts to talk about it like everything is fine. I'm not about to explain to them anything either because it isn't their business. It's also hard when I see people that know. I don't know whether to smile or cry. The pity in their eyes in hard to see. I don't want pity, I want a miracle.

I have to keep trusting that God has a plan in all of this. I don't know what it is but I trust that He has one. On that topic, one of the things that has been moved from the back burner to the front now is my desire to start a Bible Study at our church for women going through infertility, miscarriage and infant loss. This is the same Bible Study I went to last year through another church. God has opened some doors for this to happen at our church now and I will be co-leading it with a friend of mine.

Last but not least, we have chosen a name for our son. We wanted something with meaning and it had to be just the right name for him. His name is Noah James. Noah means rest or comfort and James after his daddy. Both of our boys will have middle names of their daddy now :)

For now, things go on as usual. We are looking forward to celebrating Wyatt's 4th birthday in a few weeks and then heading off to Walt Disney World to make some memories with Wyatt and Noah.

Wednesday, April 19, 2017

One Week

It's been exactly one week since our life was completely turned upside down. As I posted my last post, I thought about editing out the section where I said I was 18 weeks along with this pregnancy and everything was fine. I wish I could edit this whole part of my life out but I can't. So, I left it but the story doesn't end there.

Last Wednesday, we went in for our routine anatomy scan. The appointment had been scheduled for this past Monday but we bumped it up so we could find out the gender of our baby and surprise our families on Easter. Instead, we got the worst news I can honestly ever imagine.

We went into the room to wait and the doctor was running late. I was anxious for him to come in and do the sonogram. When he got in the room he asked us if we wanted to know the gender and we said he did. He put a DVD in to record the sonogram I assume. He found out the gender right away. It's a boy! We were so excited and Wyatt was excited to find out he's having a brother. I could see the baby's little legs moving around and he looked like he was waving. The doctor continued on to check everything out and he got to the head. His face changed. He kept looking. He finally said, "I'm afraid I have some bad news". I knew something was wrong but in that nano second of a moment, I didn't think it would be as bad as it is.

Then the doctor told us our baby has anencephaly. WHAT?!?! I had heard the term before and knew a little bit about it. I knew he wouldn't live. My heart just sank. I looked over at James and with tears in my eyes told him our son won't live. Our son has no brain. You can see on the sonogram that there is absolutely nothing above his eyes.

In that moment, our lives forever changed. We won't ever be the same again. Ever. How do you go from planning a baby shower to planning a funeral? It makes no sense to me. I can feel our son, my baby. I feel him move and kick but the only place he can live here on earth is in my womb.

We have many questions. I would be lying if I said we understood. We don't. It is hard to wrap my ahead around it and how this could happen after everything we have been through. I have cried. I have yelled. I have been through just about every emotion any person can have in the span of a week (and sometimes within an hour). How do we explain this to Wyatt? What do we say? How much do we say? What is delivery going to be like? What will he look like? How long will he live? Will we have minutes or hours? How am I going to survive the next 4 months? Will he even make it to delivery? Do you cremate or bury? Could I have prevented this? Will it happen again?

There are thousands of questions and we have no answers. Most doctors would encourage you to induce now to save you the emotional pain of carrying to term. Ours did not. He values life like we do (part of the reason we chose him). It wouldn't have mattered. I knew the choice I would make anyway. I will carry our son to term or until Jesus takes him home - whichever is first. Was it an easy choice? Yes and no. It was easy because I saw his heart beating. I feel him moving. I can not take his life. It's not mine to take. Is it hard? A thousand times, yes. It is so incredibly hard to put into words the emotions I've had.

I talked about Joy in the Journey in my last post. It's really easy to look at this and be angry. I've had my moments of anger too. I've also had moments of Joy. What? Maybe in a few years I can look back at this and find more moments that I can't see now but there have been a few moments already.

We have had to lean more on our faith than ever before. It is literally the only thing keeping me going. I thought I would never be able to see Easter the same way after all of this and in a way I was right. However, I don't think I will look at it with sorrow as I thought I would but instead with a heart full of gratitude for what my Jesus did for us. Because of the choice he made, I know that I will see my son again and his body will be whole and perfect in every way. I keep picturing him at the feet of Jesus in heaven. It still hurts my heart to know that I won't get to spend much time with him here but it makes me happy to know he will be with the person who understands this pain like no other - God.

I have found joy in the support we have been given from family and friends. They have cried with us, they mourn with us, and they have prayed with us. On Saturday night we went to church as usual. Neither of us wanted to go but we knew we needed to be there. There were hugs from the moment we stepped in the building to the moment we left. During the invitation, we were blanketed with prayer from our pastor and several of our friends. I had held it (mostly) together during the service but at the end a sonogram was shown (it was part of the sermon). I just couldn't hold it together anymore. The tears came but I felt the hands of our friends behind us and I knew they were praying. I sobbed on my pastor's shoulder as he prayed with us at the altar. I don't remember a whole lot but I know those prayers haven't stopped (sorry about staining your jacket Kris!). It.Was.Hard.

I've had several people tell me in the last week how strong I am. I'm not. I'm not strong or brave or any of the other things people have said to me. I'm human. I'm scared, angry, sad, heartbroken and a multitude of other things. I have to take each day, hour and second at a time. We don't know how much time we really have with our son but we hope for as long as possible. I am normally a very open person (maybe too much?) but I find myself not wanting to share anything right now. I want to keep him to myself for every second I can. I don't want Wyatt to leave our sight but then I realize that's the fear talking and if there's one thing I learned you have to have faith over fear.

We will continue to go on the vacation we had planned this summer to Disney. At first, I wanted to cancel the whole thing but the more I thought about it, the more I wanted to go. It will be the only time I will be able to have both of my son's there with me.

I have more I want to say but I will leave that for future posts. Please keep praying for us. There are some difficult days ahead. I'm not sure I will ever be able to bring myself to call a funeral home but the reality is, those are things that have to be done.

Keep sending us texts, emails, messages, phone calls or whatever else. We do read them all. It's not always easy to respond but we do read them all. Please pray for our whole family. There are grandparents, great grandparents, aunts, uncles, and cousins who are all heartbroken too and a soon to be 4 year old who doesn't understand what is going on. He doesn't what it means that his brother won't live here with us but instead with Jesus. It's so much for a little heart to comprehend and I have no doubt that when the reality of it sets in for him, he too, will be broken hearted. As a mother, that is probably the second hardest part of all of this. I can't make it better for him.

We are trusting God will carry us through. We don't know God's plan or why this happened and we probably never will here on earth but we trust that God DOES have a plan and He will see us through.

I leave you with this song by Selah. One of the singers in that group lost a baby girl soon after birth as well. This song was written for her.

https://www.youtube.com/watch?v=VLuaGiu73jc

Lyrics:

There were photographs I wanted to take Things I wanted to show you Sing sweet lullabies, wipe your teary eyes Who could love you like this?

People say that I am brave but I'm not Truth is I'm barely hanging on But there's a greater story Written long before me Because He loves you like this

[Chorus] I will carry you While your heart beats here Long beyond the empty cradle Through the coming years I will carry you All my life And I will praise the One Who's chosen me To carry you

Such a short time Such a long road All this madness But I know That the silence Has brought me to His voice And He says ...

I've shown her photographs of time beginning Walked her through the parted seas Angel lullabies, no more teary eyes Who could love her like this?

Tuesday, April 18, 2017

My Infertility and Loss Story

There has been much that has gone on in the over 4 years that I have last written. It's really hard to know where to start so, I am going to post my complete infertility story up to today. I was asked to speak and tell my story to our MOPS group at church a couple of weeks ago. This is written like I am speaking since I wrote it specifically for that. Grab a snack and a drink because this is long (6 pages typed up). Be forewarned that I talk about my miscarriages, premature birth, and probably more about my body than any one person ever wanted to know.

My Infertility and loss Story

While many people make new year’s resolutions, I like to choose a word or phrase to focus on each year. This year my phrase is, Joy in the Journey, and I hope that I can share a little bit of the joy I’ve found in my journey today.

Looking back, there were signs of infertility dating back to puberty. I had my first cycle at 12 and did not have another for a year. In fact, I never had monthly cycles. They were sporadic at best. Every summer camp, every sleepover, every purse I ever owned was stocked with products just in case I was somewhere and the inevitable happened. At some point in high school, my doctor put me on birth control to force having a monthly cycle. In a way, this was a relief. I knew when it was going to happen – no surprises. What I did not know was that continuing to be on birth control for over ten years causes problems in and of itself.

Fast forward to 2009 when I married my prince charming (haha) and I knew I need to stop taking the birth control and begin to regulate my cycles. My cycles continued on monthly just like they always had and I thought, Great! My body regulated everything. After 6 months, I knew something wasn’t right. My cycles weren’t coming regularly anymore. They were heavy and painful when they did come and lasted for weeks not days. So, off to the OB/GYN I went. Bloodwork was drawn and I was told it was all normal to just keep trying.

So, we kept trying. I discovered a book called, “Taking Charge of Your Fertility” and read it from cover to cover. The books talks about charting your basal temperature every morning to help predict ovulation. I began doing that and it appeared that I ovulated based on those temperatures BUT again, my cycles were coming less and less frequent. I was going months between each cycle. Then my temperatures began to flatline and never showed a clear shift to indicate ovulation.

I went back to my doctor who basically told me that charting temperatures was worthless and proved nothing. Just keep trying! I knew then, he was not the doctor for me. I went through three more doctors in the next year but never received answers nor was any testing ever done. We did visit a reproductive endocrinologist who immediately said IUI would not work for us and we needed to do IVF if we wanted children. I was a little taken back by his bedside manner. He never explained to us why he thought IUI would be unsuccessful for us.

In fact, no one ever told us why we could not get pregnant and none of them ever did testing outside of routine blood work. At this point, I was beginning to feel hopeless. How could we ever have children if we couldn’t ever find out what the problem was? It did not make sense to me at all.

During this time I had begun grad school. Through my classes, I met a friend who lived here in Wylie and we began talking about our struggles with infertility. She told me of a friend who had gone through something similar and had a doctor who listened to her. She gave me his name and I made an appointment very soon after that conversation.

In my first meeting with him, he spent almost an entire hour talking with me. We went over everything from my medical history. We discussed all sorts of options and he even looked at my charting (and he didn’t think I was crazy for doing it). He told me that day he suspected he knew what was going on but wanted to run some tests first which we did. His suspicions were correct. My blood levels showed I have Poly Cystic Ovarian Syndrome (PCOS), also known as the string of pearls. This meant my body was trying to ovulate and would gear up but my hormones wouldn’t let the egg get out of my ovary. Over time this caused my ovaries to get a hard layer on the outside also preventing the eggs from getting out which is what causes the cysts on my ovaries.

This explained a lot of the pain I was having. It explained my charts and it explained many other symptoms I had been having. My doctor suggested we do a laparoscopic surgery called Ovarian Drilling. Yes, it was as bad as it sounds. In January of 2012, I had the surgery. Before surgery, my doctor prayed with me and held my hand until the anesthesia took over. My doctor removed 9 cysts from one ovary and 17 from the other. He also discovered I had stage II endometriosis as well. He removed that during surgery too.

I recovered well and in March of 2012 just one full cycle after surgery, we got pregnant!! Our joy was short lived. My doctor did bloodwork to measure the amount of hormones in my system which should double every 48 hours. My very first level was a 4. My second a week later was an 11. By this time, I had already begun spotting. We met with my doctor and made the decision to go ahead and miscarry on my own since the process had already started. I was to call him if I had any pain.

I had days of heavy bleeding and I thought, okay this is finally over. I can move on now. But then a few days later, I would bleed again. This went on for weeks. I know you are thinking why didn’t you call your doctor? I was going through a very stressful situation at work and all of my energy and focus was on that and grad school at the time. Finally, in May I had had enough and called my doctor who immediately scheduled me for a D&C. It was originally scheduled on my birthday but I called back and asked if it could be any other day and my sweet doctor scheduled it on a day he doesn’t normally do surgeries.

During this surgery, it was discovered the baby had implanted in my cervix. This was why I would have days of heavy bleeding and days of no bleeding. Cervical pregnancies are extremely rare and are associated with a high morbidity rate. God definitely had His hand on my life during this time.

After this surgery, we had to wait for several months for my body to heal as there were internal stitches and an increased rate for cervical incompetence. Once we were given the all clear to begin trying again, we got pregnant right away. To say we were shocked was an understatement. Again, my hormone levels were checked but this time, they were perfect and they were rising perfectly!

I once thought that when I finally got pregnant, everything would be great. The truth was while my pregnancy was overall uneventful for the most part, the turmoil inside was not something I had been prepared for. As a infertility patient, you become programmed in a way for failure. You expect the worst and prepare yourself for that as a way of self preservation. Infertility didn’t go away just because I was able to conceive. The psychological effects continued to linger on. I set goals for myself and once we got to 24 weeks, I felt a tiny bit of relief knowing that at least if I had my baby then, he would have a chance of survival.

After we hit that 24 week mark, I began swelling but my doctor was not concerned as everything else was fine. Baby was fine, blood pressure was fine, no protein in my urine. Everything was fine……until June 12, 2013. As I got ready for the day in between answering my work emails, my water broke. I wasn’t sure if that was what was happening or not but my mom suggested I call my doctor who of course wanted to see me. My mom drove me to the doctor as I called my colleagues to let them know I would be off line for a little bit. I was only 32 weeks so, I figured it was just something silly and I was worried over nothing.

My doctor immediately saw me and sent me straight to triage at the hospital. He wanted more tests run there but it was likely my water. We made the 30 second drive through the parking lot and ended up valeting the car because we had no idea where to park or where to go. The valet man actually wheeled me all the way up to L&D ☺ It’s kind of funny to look back on that now.

I was admitted and it was confirmed my water had broken. Our goal was to keep Wyatt in for 2 more weeks to make it to 34 weeks. I was not allowed out of bed for any reason, I could not roll from side to side without a nurse – NOTHING. I was given my first set of shots for Wyatt’s lungs. A high level sonogram was done which showed I had NO amniotic fluid left. None. An IV was started to increase the fluid in my veins, giving Wyatt more nutrients and hopefully he would make more urine to create amniotic fluid. Family all finally left for the night later that evening. The nurse helped me roll to my right side and I watched the monitor all night listening to Wyatt’s heart beat begging God to keep him safe. I don’t remember sleeping at all and finally at 1 a.m. I asked my nurse to help me roll to my other side. It was time for the second shot for Wyatt’s lungs so, she gave me that first and then helped me roll over. The second I rolled over, I had a huge contraction. I had been having small contractions all night but had not felt them until now. My doctor was called and he gave the nurses instructions to try to stop labor. The medication they gave me didn’t stop the contractions at all. At this point, we were out of options and Wyatt was on his way. We called family around 4 a.m. so they could begin making their way to the hospital. I’m pretty sure they took up the entire waiting room! A few hours later I finally asked for an epidural since I couldn’t walk or do anything other than lay on my back and who wants to labor that way. I was already dilated to a 7. The epidural did end up slowing my labor a bit.

During this time, nurses and doctors were in and out. A team from the NICU came to talk to us and walked us through what to expect. A lot of it depended on if Wyatt came out breathing or not. We were prepared that he may not breathe on his own immediately but if he was not, they were there to resuscitate him. They would assess him in our room and then take him directly up to the NICU.

Wyatt was born at 12:15 p.m. on June 13, 2013 and not only came out breathing but came out screaming. He not only never had to be resuscitated, but he was never intubated either nor did he have to have surfactant given for his lungs. He was born at 32 weeks and 2 days. We expected we would be in the NICU until at least my due date with him. We weren’t. We stayed for FIFTEEN days! Wyatt was never critical and once he was stabilized in the NICU, he only needed to gain weight and learn how to suck, swallow, breathe at the same time. Again, God was evident in every detail of his birth.

As we learned our new normal with a preemie baby, Wyatt had some setbacks with his growth but eventually caught up. If you’ve ever met him, you would never know he was born 2 months early.

When Wyatt was a year old, we decided to start trying for a second child. We were thrilled to learn that just after a few months, we were expecting. No tests, no medications, no nothing. We had just closed on our first home and it was a very exciting time. My doctor checked my hormone levels as usual. The first one was great. The second was not. They were not rising like they should have been. We were sent for a sonogram the following week to make sure it was not an ectopic pregnancy and thankfully it was not. We saw nothing on the sonogram at all. Again, we chose to let my body do the rest. Waiting for a miscarriage to happen is pretty awful. Every time you go to the bathroom, you wonder if this is going to be it. At this point I was struggling with a lot of anger. I wasn’t even sad, I was just angry. Why would God let me go through this again? Why would he choose to let me experience loss after loss. I was trying to reconcile why God would give me such a desire for children but not let me have them. I was not in a good place. I think I became numb in a way. I didn’t want to talk about it and I didn’t. I moved on while trying to find answers.

We tried for several more months and were not able to conceive on our own. I was started on clomid to help me ovulate. The first month I was on it, my cycle was 17 days late. You can imagine the emotions I had during that time. I just knew it had worked! Sadly, it didn’t and neither did the following four cycles.

During a search on facebook for infertility groups, I found a group discussing NaPro (Natural Procreative Technology). So, I started researching what that was exactly and learned this was something that could quite possibly give me the answers I had been looking for. If you want to know more about NaPro, I am happy to have a conversation with you about it but it would take me hours to get through this story if I stopped to explain it. To sum it up, it was a method of tracking different body signs and a doctor trained to read them could help diagnose underlying conditions. So, I started on that journey in July of 2015. We were approaching the one year mark of our second miscarriage and I was feeling pretty hopeless that we would ever have another child. My first NaPro doctor identified some hormone issues and we worked to rectify those but weren’t making much progress. I then switched to another NaPro doctor in the spring because he was also an Ob/Gyn and not just a general practice doctor. He immediately knew it was not anything new we were dealing with but the same thing – PCOS. He scheduled me for a diagnostic laparoscopy a few weeks later where he was able to see that along with PCOS, my endometriosis was back. My uterus also ended up perforating during this surgery and that was repaired.

We scheduled a second surgery the following month to do an Ovarian Wedge Resection. This is where a wedge of each ovary was cut out and then they were stitched back together. This was a new procedure that had really high success rates with curing PCOS. My Uterus again, perforated during surgery. Because of that, my doctor could not see to remove the endometrioses but tried to get some out by remembering what he saw in the first surgery. This surgery by far, was the hardest treatment I had ever done. I had six incisions. I was admitted to the hospital overnight because the surgery had lasted 6 instead of 3 hours and my pain was not manageable upon waking up. My recovery was about 6 weeks to feel about 80% myself and 8 weeks to get back to 100%. We had to wait for several months for healing to take place before we were able to start trying again. We were cleared at the end of September and James left for Israel in October during the most important time, haha!

On December 26 last year I got a positive test! I was shocked! I had all the signs my cycle was on it’s way but it was days late. I had negative tests all the week prior and was actually okay with it not happening that month due to insurance reasons.

We started the usual tests and my anxiety was through the roof waiting on those results. They were perfect. We went for our first sonogram and heard the heartbeat. The night before I barely slept, I finally got in the bathtub and listened to some praise and worship to try to help calm my fears. I was so afraid we would find no baby on that sonogram. One week after that sonogram, I started bleeding. I completely lost it. Again, I started questioning WHY ME? It was 15 minutes before we had to leave for church. I was trying to hold it together the best that I could but I don’t think I was doing it very well. Thankfully, it all stopped. My doctor asked me to keep him informed but told me we were doing everything we could. I am now 18 weeks and everything has been great so far. We continue to pray for a healthy FULL term baby.

Now, where was the joy in the journey? What I left out was that last year, someone in this very room told me about an infertility/loss Bible Study through Watermark church. It was going to start soon but I didn’t know how I felt about going and James works late on Tuesdays and so I would have to figure out what to do with Wyatt. I’ll never forget what she said to me. “Ashley, I will watch him for you. PLEASE, let me do that for you”. There was Joy in the journey.

During that Bible Study, I met some incredible women. Many who were facing things much worse than I was. The Bible study was called Shiloh which comes from Samuel 1:9-11 when Hannah went up to Shiloh and laid her heart out to God about the pain of her infertility. Shiloh is a place of rest. What a thought! During the 7 years of doctors and tests and surgeries, I had never found that place of rest but last year during that Bible Study, I found rest. Joy in the journey.

Joy was God putting the right people in my life and guiding me to the right doctors each time. Joy was my doctor praying for me before my first surgery and again when I had my D&C. Joy was in the prayer he said in my hospital room as we faced giving birth 2 months early. Joy was in the prayers my current doctor prayed before both of those surgeries. Joy was in finding God in the depths of my sorrow and pain. Joy was in the prayer the most unexpected person said over me last December, the very month I conceived. There was and is joy in the journey.

God defines success not in terms of what we accomplish; rather, He defines it in terms of the transformation we allow Him to make in our lives.

Whether you are going through infertility, have gone through infertility, loss, anger, sadness, loneliness, or hopelessness, I hope that you too find Joy in the journey. Photobucket