The life after

It’s been a while since I’ve posted anything on here, but i’m hoping I will be able to find some time to post more often.  However, while mister is getting in a quick snooze, I wanted to post something that has been on my mind a lot lately.

About a month and half ago, I was asked by a friend how it was being pregnant and having a baby after loosing our twins.  Then, on one of our Sunday trips to the cemetery to see our boys, I made a statement to my husband and I was shocked by his answer.

Lets start at the beginning.

Deciding to try for another baby after we lost our twins was the most terrifying decision we have ever made.  For us, its not “Oh, we decided this, lets give it a few months and hopefully it will happen!”  It’s more of a call to the fertility clinic, go through lab draws, ultrasounds, injections, surgery, a few thousand dollars, an embryo transfer, and a whole heck of a lot of prayers that it all worked.

We lost our twins the last day in January and the first day of February.  In March, a nurse from the fertility clinic called to “Check in and see how the pregnancy was going”. I bluntly told her that we had lost the twins about a month ago and i’m sure made her feel utterly horrible.  We then had an appointment to see our fertility doctor in a few weeks to discuss our options.

After talking with my doctor, discussing it together, saying lots of prayers and MANY trips to the temple, we decided to go ahead with an embryo transfer.  Luckily, we were blessed to become pregnant.

Three days before I was to have my blood drawn to tell us if I was pregnant for sure or not, I took a pregnancy test at home.  As the two lines appeared, the fear, anxiety, worry, and grief washed over.

When I was pregnant with the twins, I did it all that a first time mom does, especially one who is a planner like myself.

I started stocking up on diapers, wipes, clothes, planned out the nursery, started painting the nursery, bought furniture for the nursery, everything you can think of.  When we lost the twins, my mom and niece went to our house while I was still in the hospital and put anything baby related into the nursery and closed the door.  That door stayed closed for a good two months.

With my second pregnancy, EVERYTHING was different.

We didn’t tell hardly anyone but our families for a good little while.  We didn’t announce on social media until we were reassured for the umpteenth time that things were going great. We didn’t take weekly bump pictures.  We didn’t have a gender reveal party. I didn’t buy anything baby related until I was 24 weeks. I listened to his heart beat every night with the doppler that we had purchased. We happened to move while I was pregnant, so a nursery wasn’t put together until right before he was born. A hospital bag was packed when I was discharged the first time for pre-term labor.  EVERYTHING happened differently.

Now, I’m sure I sound utterly crazy to you.  However, I’ve been reassured by my doctor that I am NOT crazy! Ha.

Grief is a funny thing, and every one grieves differently.

The entire time I was pregnant, I was terrified.  Terrified that I was going to give birth and only hold my little peanut for a short time before he returned home.  Terrified that one of the ultrasounds would show that his heart had stopped. Terrified that I was going to have to bury another child.

Basically, what i’m saying, unless you’ve been through a loss like this, you don’t really fully understand.  And if you have been through a loss like this, I’m sure some of this sounds all too familiar.

Luke is now four months old.  We lost the twins over a year ago.  And guess what?  I still grieve them.  I still miss them every day. I still occasionally find my self sad, and sometimes shed some tears for them.  I worry frequently that something is going to happen to Luke.  But, as my doctor has told me, He would be more concerned if I didn’t have these fears.

Going back to what I stated earlier.  When my friend asked me, I told her it was hard, because it was.  It’s the hardest thing we’ve had to do. I told her I still grieve, because I do. I wish that it was a walk in the park, but it isn’t.

Alex’s part of the conversation that day as we were driving through the cemetery is what has stuck with me the most.  He told me that if we hadn’t experienced that, we wouldn’t nearly be the people that we are today.  We wouldn’t have the faith that we have.  We wouldn’t have the understanding of the atonement that we do.  We wouldn’t have met the amazing people that we have, and we wouldn’t have grown to the better people that we are.

So, there you have it.  The truth of what its been like living the life after loss, and moving on.

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The beginning of our current little mister

When you become pregnant after loosing a baby, whether it be from a miscarriage, still birth, neonatal loss, or infant loss, they call the baby that follows a rainbow baby.  Why a “rainbow” baby you ask?  Because a beautiful rainbow always follows a dark storm.

We became pregnant with little mister at the end of June, early July of 2016.  We did a frozen embryo transfer in June when we transferred one embryo.  We consider ourselves beyond lucky to have had our transfer work,  and to become pregnant with another sweet little baby.

Things started out very well in the beginning with the pregnancy.  The baby was growing like it should be, I was sick which always means good things to me, we were happy.  My regular OB wanted to see me sooner than normal just to make sure that we watched this pregnancy very closely.  I started going to the perinatologists (MFM) who would follow me closely and intervene if needed at 12 weeks.  I was scheduled to see them every two weeks as they would measure my cervix length and make sure that it was holding strong and I wouldn’t need a cerclage. I started taking a once a week shot of progesterone to help calm the uterus and help prevent preterm labor.

At 16 weeks, I started to have anatomy scans when I went to MFM every four weeks.(I was going in for a cervical length scan every two weeks, and they did an anatomy scan every 4) We discovered at this appointment that we were blessed to be expecting another little boy! As the doctor told me, apparently we are boy makers! Also on the ultrasound, it showed that our little babe had renal pyelectasis.  Basically, his kidneys were a little bit bigger than they like to see, but the doctor made sure to let me know that this is very common in boys, as they tend to not pee out all that is in there.  She said we would monitor it and make sure that it didn’t become an issue. At this time, the MFM doctor also asked me if I had my quad marker screen drawn yet. I told her that I had, but I didn’t know the results.  She left to look up the results and told me she would be back.

When she returned to the room, she told me that my results had come back positive, and they were indicating towards trisomy 21, commonly known as down syndrome. She said this made our odds of our baby having down syndrome 1 in 48.  She also said that with the findings of the dilated kidneys, this was a soft marker for down syndrome. She urged me to have further genetic testing completed, and gave me two options for this. 1. have an amniocentesis done or 2. have a cell free DNA lab test drawn.  The amniocentesis came with a risk of pregnancy loss, so it was thrown out the window as soon as I heard that.  I opted for the blood test on my part. The nurse came in, filled out the lab packet for the test, and I went to the out patient lab to have the test drawn. The results were supposed to take about a week before we heard anything.  After a week had gone by, I hadn’t heard anything.  So, I called MFM to find out what was going on.  Come to find out, my blood sample had broken in the mail, and I needed to have it redrawn.  I’m glad I called to follow up! I went in that day and had the test redrawn, and four days later, we had the results back.

It was the week of Thanksgiving, and I was at my parents house when my phone rang. I answered it, and it was the genetic counselor for our MFM clinic.  She told me that my results had come back, and that she needed to talk to me about them.  Never really a positive happy thing to hear, but I had been having this little feeling inside that I knew that’s how my phone call would end up.

The results of our cell free DNA test had come back positive for trisomy 21.  This meant that we were now looking at a 98% chance that our baby would have trisomy 21, down syndrome. The genetic counselor then proceeded to say that with the kidneys that were dilated, and the recent findings of slightly elevated ventricles in his brain, they were pretty positive that it was more of a 100% chance that we were looking at down syndrome. She gave me some resources, and scheduled for us to have a fetal echo-cardiogram completed to get a more in depth look at his heart.

Alex and I took this information in and tried our best to accept it.  Alex struggled a little at first with the loss of dreams he had.  (I’ll have him touch on this more in the future when I ask him to write about it!) My mind went to worrying about what it meant for the future.  Luckily, we both have very supportive families that we knew would help us get through this challenge!

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(His 3D ultrasound picture at 20 weeks)

 

 

Where we are now

I understand that there is a lot that has happened in the middle of my story.  Trust me when I say its  A LOT.  I promise I will get to all of it, I really do.  I just feel like I need to get to where we are today. Details might be a little sparse, but again, I promise I will touch on everything.  Alex will make sure of it.  🙂

Fast forward to the end of March 2016.  Out of the blue, my cell phone rang, and as I looked to see who it was, it was our fertility clinic.  Apparently they call around that point to check and see how patients are doing in their pregnancy.  I laid it all out there for the poor medical assistant on the other end.  According to Alex, during this time frame, I was very blunt and honest with people, probably more than I should have been! She apologized and said she had no idea.  She asked if we wanted an appointment to come in and talk to our doctor about what happened.  I agreed, partially because I just wanted to get off the phone with her. Before I knew it, Alex and I were sitting back in the office where it all started, talking to the same man who helped us get what we wanted before.

We planned to do an emrbyo transfer, and set everything up to complete it.  I again needed to have a hysteroscopy.  We completed this in April, they ended up removing a lot of retained placenta, and we were told we had to wait a month before we could proceed with anything.  We waited until school was out for the summer, and we did a frozen embryo transfer.  We transfer one embryo to help decrease our risk of having twins. We were lucky and this cycle worked for us, and we ended up pregnant with one sweet little babe.

I was sick just like I was with my previous pregnancy, and we were being monitored VERY closely.  I started going to the maternal fetal medicine doctors at twelve weeks, and returned to their clinic every two weeks to make sure things were going okay.

As part of a routine pregnancy, my regular OB and the MFM doctors advised me to have the quad marker screen test completed.  I agreed, and the test was completed.  At an appointment to the MFM clinic, the doctor asked me if I had the test completed yet.  I told her that I had, and that I wasn’t sure of the results because I had not been back to my regular OB, and no one had called me the results. She said she would look them up for me after we discussed the ultrasound.  This was a routine visit for MFM.  You have basically an anatomy scan, they scan my cervix and measure it, the doctor comes in and we go over the ultrasounds, make a plan, and I head out on my merry way.

At this appointment, I was 16 weeks along.  We had found out that we were having a little boy! This excited me and made me nervous all at the same time.  The doctor also talked with me about how his kidneys were a little dilated on the ultrasound.  She said it wasn’t something that we should worry about, that boys sometimes tend to have this.  She then left the room to check on my quad marker screen results.  A few minutes later, she returned to my room.  She told me that my quad marker screen had come back positive and was pointing towards trisomy 21, commonly known as down syndrome.  She said this test narrowed it down that we would have a 1 in 48 chance that our baby would have down syndrome.  She then talked to me about what this meant with the kidneys on the ultrasound.  She said that a baby with dilated kidneys is a marker for down syndrome, and she advised me to have further testing completed.  She presented me with two options. 1. I could have an amniocentesis completed and it would tell us 100% if the baby has down syndrome or not.  She also had to advise me that there was a risk of pregnancy loss that can be associated with having an amniocentesis done.  Option 2 was to have a blood test done, a cell free DNA.  The results of that test are 98% accurate and it was a simple blood test on my part. Given our history, she was the least bit surprised when I opted to have the blood test completed in stead.  A 98% answer was surely better than the risk of a pregnancy loss.

The nurse for MFM came in, filled out the packet for me, and sent me to the lab.  They instructed me that I should hear from the specialty lab where my blood was being sent within 3-5 days telling me that it had arrived.  Well, 5 days later, I hadn’t heard anything.  I called the MFM clinic and they looked into it for me.  Come to find out, my blood sample had broken in the mail and they didn’t have enough to complete the test.  I had to go back in, have another sample drawn and sent off.  This would push our test results back.  Oh, and to add to it all, this was the week before Thanksgiving!

Luckily, I had some luck on my side.  The results came back sooner than normal, and we received them before the holiday. The genetic counselor for our clinic called me and told me the results. I had been to MFM just the day before an ultrasound, and this time, our little babe still had elevated kidneys, and slightly elevated ventricles in his brain.  Both markers for down syndrome. When I spoke with the genetic counselor, she told me that the test had come back positive yet again.  She said that with those results, and the findings on the ultrasounds, they feel very strongly that our little man would most likely have down syndrome.

Fast forward to January.  I promise i’ll come back to our findings and give more details. I’m 30 weeks pregnant. Braxton hicks contractions had started back around Christmas. Our little mister was an active little fart who was moving constantly. Everything was going as great as it could.

On Thursday January 12th, I went to work like any normal day.  It had been snowing that morning just like it had many mornings so far in January. I made it to work, and went about my day.  Around noon, I realized that I hadn’t felt our little man move as much as I normally did. I tried to play it off, but i’m never really good at that.  I drank some juice and sat at my desk doing work on my computer trying to pay attention to how many times he was moving.  He gave me a few movements, and I finished out my day a little more at rest.

I got home and tried to take it easy.  I drank a lot of water and laid down to rest.  I still wasn’t feeling him move as much as I normally did.  I checked his heart beat with the doppler we have at home, and he was right where he normally was.  I just had the uneasy feeling into the evening and finally told Alex about it around 7:30-8:00.  He asked me if I thought we needed to go in and get checked, and I told him for my sanity, I did.

We made it to the hospital a little after 9:00. They hooked me up to the monitor and a beautiful heartbeat could be heard, and so could lots of movement! I just couldn’t feel those movements.  Also showing on that lovely monitor, was the fact that I was having regular contractions about every 6 minutes or so.  I had noticed the contractions earlier that day, but I was so worried about him not moving, that that’s all I focused on.

Long story short, they ended up keeping me over night, they tried an oral medication to help calm the contractions, it didn’t help.  I then had to go on a magnesium drip to help with little misters brain and to prevent any bleeding in case I did end up delivering.  They told me I would feel miserable on the drip, and let me tell you, they weren’t joking!  Luckily though, it did help with the contractions and they became less consistent. They took me off the magnesium drip mid Friday morning and switched me back to an oral medication.  They then sent me home Saturday morning with a prescription to take when I had a contraction, and orders to be on modified bed rest for at least two weeks.

So, i’m currently 32 weeks pregnant, hanging out at home on bed rest.  I’m making weekly visits to my OB for a non stress test and an appointment.  Each day is an accomplishment that I don’t go into labor.  I told Alex I feel like a ticking time bomb just waiting to go off!

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IVF

After taking about a year off of anything infertility treatment related, Alex began a new job with a new company.  I remember him coming home from work on the very first day, and telling me that their health insurance covered infertility treatments 100%.

This was a game changer.  We talked it over, and decided that this was a blessing that came into our lives and we couldn’t pass up the opportunity.

We scheduled an appointment with our fertility doctor, and waited anxiously.

Our doctor was very happy to see us and we discussed all of our options.  We were ready for this.  We set up an appointment with his IVF coordinator nurse, and we were on our way! She gave us our calendar for medications, appointments, ultrasounds, lab draws, and everything we would need.

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We were set to start everything at the end of August, first of September.  We decided while we could, we would take a quick weekend getaway, just the two of us, before our lives became engulfed in fertility treatments, and hopefully, a successful happy pregnancy.

When we returned from our getaway, I underwent a water ultrasound to make sure there were no abnormalities in my uterus.  They found some polyps that needed to be removed, so, I prepared to undergo a hysteroscopy to remove them.

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We had to be to the fertility clinic at 5:30 in the morning.  They removed 5 polyps, one of which was blocking one of my Fallopian tubes. After the hysteroscopy, we started injections the next day to start our process for egg retrieval.

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Lucky for me, my body actually did what it was supposed to do and responded very nicely.  I had many follicles (the joys of having PCOS) that were very impressive in size.  Soon, the time came to trigger and go in for egg retrieval.   Egg retrieval fell on my birthday, so I couldn’t ask for any better luck, right?!

They were able to retrieve 21 eggs, of which after 5 days of incubation, we had 7 beautiful embryos.  We decided to transfer 2 embryos, and freeze 5 of them.

The start of our journey down the fertility treatment road

After trying for a few months on our own, and receiving the diagnosis of PCOS, we decided that we would begin the treatments in hopes it would help us get our family started a little sooner.

The ultrasounds and lab tests informed us that I was not ovulating like I should be.  I started on Clomid in hopes that it would help with the ovulation.  After two months of still not ovulating while on Clomid, we switched to Femara hoping that something a little stronger would help.

I was on Femara for about four months. I ovulated two out of the four months, with no success in actually getting pregnant.

Now, when I say we tried oral medications for four months, it wasn’t actually four months. One of the most common characteristics for PCOS is the lack of a period.  So, my months would be wait for my period to start, it wouldn’t start, I would take a medication to induce a cycle, then we would take the Femara again.  All in all, this time frame was really about 6 1/2 months long.

During this time frame,  I had applied and accepted a position at a hospital in northern Utah where I had grown up. So, Alex and I had made to move three hours north to our new home. We were still working with our OB/GYN in southern Utah and communicating with him to have the tests completed in northern Utah. I had a HSG completed in December of 2011.  It showed that everything was normal and open.  My doctor told us that he wasn’t sure what was going on and why we were unable to get pregnant.  He also suggested that we consider seeing a reproductive endocrinologist to continue our efforts in trying to start our family.

We chose a fertility clinic close to where we were living, set up our appointment, and waited for the day to come.  Our initial consultation went well.  Our doctor sat down and talked to us about everything we had gone through, and what our next steps would be to move forward.  We would start with IUI treatments, pray they would work, and go from there if they didn’t.

We started treatments right away and endured heartbreak after heartbreak.  We did three treatments with no success.  We were broken, devastated, and I was a mess of a puddle on the floor.

We had an appointment with our doctor to discuss the next steps.  He told us what we already knew.  We would have to move forward with an IVF.

I couldn’t move forward that easily.  I had to protect my heart, and heal my self mentally. Alex and I decided that we would not move forward immediately, that we would take some time off to heal and prepare.   Our doctor was okay with the plan, and told us to call the office when we were ready to move forward.

The beginning of our story

Alex and I met in the fall of 2009.  According to him, he was instantly smitten and wanted to get to me know better.  I, however, was a little more hesitant. I had already decided that I wasn’t going to give him any time because I was interested.  Alex was persistent, and I finally gave in and gave him a chance.  Before we knew it, Alex proposed on new years eve and we were planning a wedding!

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Soon after we were engaged, Alex left to go do a Disney internship at Disney world. He was able to fly home and visit while we did our engagement pictures, and I was able to go down to Florida to visit for a week.  Let me be the first to say, it’s difficult to plan a wedding  with your fiance across the country!

We were married in June of 2010. We lived in southern Utah  where I had been living for the last three years.  After being married for about three to four months, we decided that we would start trying for a family.  We had a feeling that it would take us some time before I would be able to get pregnant, but we weren’t horribly worried.

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My OB/GYN told us to try for six months on our own, and if we weren’t successful at that point, he would intervene and help us. So, we decided to give it a try and see where fate took us.

After six months of no success, I had an appointment with my doctor.  He ran some labs and did an ultrasound.  All of this resulted in a diagnosis of PCOS, Polycystic ovary syndrome.

I went home and talked it over with Alex, and what our options would be, and we began our journey down the infertility treatment road.