Blessed beyond measure...

Our life is so blessed. 

"Give thanks in all circumstances, for this is God's will for you in Christ Jesus." -1 Thessalonians 5.18

Some of the ways God has been working in our lives and through the hearts of others in the past few days-

Since my last blog post, I have been taking extended release Cardizem to help control my contractions.  It has been working wonderfully at making my contractions much less intense and more manageable!  I still have regular contractions, but I am able to stand longer and do more before they become painful.  This has allowed me to return to work, and I successfully completed three 12 hour shifts in a row this weekend!  My coworkers were also very helpful in making sure that I had time to get plenty of drinks, the resulting million bathroom breaks, and a chance to get a snack or two.  They also offered kind words and jokes to make the days lighter.

Speaking of awesome coworkers, I have had four different nurses switch a total of 11 future shifts with me so that I can work day shifts instead of night shifts.  I have already been having a difficult time with sleep lately due to all that is going on, and that combined with a few other things have made night shifts physically more difficult on me than day shifts.  I am contracted to work partial day shifts and partial night shifts.  I sent out an email asking for help, and every single shift I asked for help with was taken care of!  Two nurses in particular that don't usually work nights switched quite a few shifts with me.  When I said, "But you hate night shifts, don't you?"  I was told, "Yes, but we love you!"  :) amazing.

I have also been told that a committee at work would like to prepare some freezer meals for us closer to Elise's due date.  With all that I'm sure will be going on after her birth, this will be a huge help!

Last week, we also had a fellow coworker bring us dinner, cookies, fruit, and cinnamon rolls!  We all enjoyed the homemade meal, especially since I hadn't been up to cooking much before that when my contractions were so bad. 

I also received a care package in the mail from Our Miracle Babies.  They are a local organization supporting women going through complicated pregnancies, moms on bedrest, or families with a baby in a special care unit.  It contained lots of fun and practical goodies including chocolate, playing cards, fuzzy sock slippers, a blanket, a reading light, disposable tooth brushes, travel mouth wash, tums, advil, a mirror, a pocket hair brush, a book of word games, and many other items.  Check out their organization on Facebook or at their website http://www.ourmiraclebabies.com/ . 

I have also received wonderful cards in the mail offering love, hope, and support, and many friends and coworkers offering a helping hand in the form of a listening ear, a meal, childcare, or anything else we might need.  It is truly humbling to see how much we really are supported in a community that we have been part of for less than 2 years!

Another recent blessing in our life is that Matt has quit his job and is staying at home with the kids again.  He was often working 60-70 hour weeks, and it just wasn't working for our family.  We are all so excited to have him home again.  His support is so important for not just me, but our kids.  And I know it's been hard on him as well to be away so much during this time in our lives.

As for the pregnancy and little Elise, things have been going well for the most part.  Elise has been much more active most days and has been kicking her daddy's hand when he says hello.  When she has had a quiet day, we've been able to use our doppler to hear her precious heart beat.  That has provided a lot of comfort.

I did go in to Labor and Delivery triage after work one day this weekend due to bright red bleeding.  I was told that I wasn't dilated and sent home.  They said I might just bleed, but to come back if it increased significantly.  I've continued to have some spotting, but thankfully not much.

While I was happy to hear that I was not dilated and was able to be sent home, once again I was frustrated by the doctors who treated me.  The first thing the OB resident said to me was, "I've been reading your chart, and I see that you haven't made a decision yet on whether or not to continue your pregnancy."  I have read my medical record notes, and it is quite clear and stated several times that my husband and I absolutely desire to continue the pregnancy.  After I cleared that up, she went on to ask me if I understood Trisomy 18 and the prognosis.  I hopped right in (to avoid the "your baby is going to die" speech again) and told her that we clearly understood the poor prognosis and shortened life expectancy, but that as of right now, besides the chromosomal disorder, they had only found a small to moderate VSD, choroid plexus cysts (which should resolve), and clenched fists (which don't alter life expectancy).  I told the doctor that we felt Elise was doing great for her diagnosis and would like to do everything possible to get to spend some time with her after birth.  The consulting doctor came in said that if I was in premature labor, they could give me some steroids for the baby's lungs, but that I might not want to do that since the baby has Trisomy 18.  I was frustrated.  In light of my repeated and openly stated wishes to spend time with my daughter after birth and to give her a fair shot at life, why would I deny her an important medical treatment that could improve her lung function after birth?  I feel like they are treating the chromosomal disorder and not my specific baby, with my specific and outwardly stated desires for her life.  We will continue to advocate for both her and myself throughout this journey, and maybe someday we can be a part of helping change the way the medical system views and treats children and families of children with a poor prognosis and/or a chromosomal disorder.  Until then, I encourage any other mommies out there carrying a baby with a poor prognosis to advocate for yourselves and your child.  Change happens slowly, especially in the medical field.  But right now we can push for and speak out for change in our own lives.

24 week ultrasound and appointment!!!

Let me start by saying, GOD IS GOOD!  This is a 3D picture that they gave us from our ultrasound this morning!  Little Elise at 24 weeks.  In case you have a hard time seeing, it's her profile and her two arms/fists up by her face.

This morning we had our 24 week appointment and ultrasound, and I think that it went as well as it possibly could. 

Elise looked wonderful on her ultrasound!  No new issues were found.  Her heart continues to have a VSD, and her brain has the choroid plexus cysts.  Her stomach, kidneys, bladder, placenta, and umbilical cord all look great!  She has dropped on the weight chart.   She is now in the 14th-16th percentile (depending on which report you look at), which has dropped from the 30-something percentile at her 19 week ultrasound.  But they told us that is still within the normal range (they want to see anything above the 10th percentile).  So for now, she is not even showing growth restriction, although she is headed in that direction.  The doctor told us that she looks amazing for a trisomy 18 baby, and how wonderful it was that she wasn't presenting with the typical signs.

I was so terrified that now that we have the T18 diagnosis, they'd look closer during this ultrasound and actually find a lot of big things wrong.  But they didn't!  Her doctor agrees that currently, her most life-limiting features are her heart defect and issues relating to brain function/development in trisomy 18 children (such as apnea--forgetting to breathe).  Her heart defect is very mild, and many people live their whole lives without needed a VSD repaired.  So for right now, her outlook is good (at least from my perspective).  I understand that placenta or other issues could still cause her to be stillborn, or that other issues might develop or be found after birth.  But for today, I am going to have a huge smile plastered on my face because in my heart I believe that she has a chance to make it...to make it to birth, to make it a few hours, and maybe even longer. 

As for me, the doctor was kind enough to prescribe me the medication I took with my first pregnancy to control my irritable uterus contractions.  This is HUGE! 

We will have another appointment in 2 weeks with maternal fetal medicine as well as with the neonatology group.  Our next ultrasound will be in about a month.

I feel so blessed today.

Thank you all for your continued thoughts and prayers.  They are working!!!

"A cheerful look brings joy to the heart, and good news gives health to the bones." -Proverbs 15.30

Almost to 24 weeks!

I will be 24 weeks pregnant on Thursday!  Hooray!  I am excited about this milestone because that is the date that my MFM doctor has set as viability, and has said that at that point she will be willing to consider further intervention for myself and Elise.

Right now I'm stuck in kind of a waiting game.  My contractions have continued, in varying intensity.  Yesterday they were so bad (and 3-4 minutes apart) that I actually had some bleeding with them.  Today they haven't been as consistent as long, but have been painful enough to bring me to tears.  Some of the comments I made today about how they feel actually prompted Matt to ask me if I thought I might be in labor because usually I don't feel that way unless I'm in labor.  He knows this drill back and forth since he's been by my side through the last two pregnancies.  Normally the regular contractions with any bleeding would prompt a trip to labor and delivery triage, however they have already made it clear that they will not do anything to treat my contractions (either for my comfort, for the baby's safety, or to stall labor in any way), so there is no point in going in. 

However, I have an appointment with my MFM doctor on Thursday, the magical day where I hit 24 weeks, and I'm hoping that she will fully examine me and treat me then.  And I hope that she will treat me like she would any other mother.  I truly feel like we are being discriminated against as far as treatment goes...it's not fair to not treat signs of preterm labor in someone simply because of the chromosomal makeup of their baby.  I'm hoping that view was from that one particular doctor that I encountered in labor and delivery on New Year's Eve, and that from this point out we will be treated differently.  I have to prepare myself to advocate for Elise and myself though, should that not happen.

Some positives for the day:

• Elise has been kicking today!
• Isaac has been bringing the baby a stuffed giraffe (given to Elise by Grandma and Papa for Christmas) and playing its music against my belly.  He said it will calm down the baby and help her get to sleep...so sweet. :)
• Our doppler should be delivered today.
• It's really, really, cold outside (-22 degrees F with a -50 to -60 degree windchill), and we are nice and warm and toasty here inside.
• Matt says I have definitely passed the "is she fat, or is she pregnant?" stage!  Yay!

A picture from the other night...

"May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the Holy Spirit."  -Romans 15.13

The results are in.

Yesterday, we received the complete results of our amniocentesis.  Elise has full Trisomy 18, with no translocation or mosaicism.  This means that every cell in her body has an extra chromosome 18.  This is typically the most severe form of Trisomy 18, but also the most common.  It wasn't a huge blow because we were already expecting that she would most likely have full T18.  We were kind of hoping that we would get a result of mosaic T18, since it is typically less severe, but God had already decided.

Yesterday I also received a surprise package in the mail!  It was a prayer shawl from a group of women that I first got to know during my pregnancy with Ainsley.  What a beautiful reminder of all of the prayers being said for our family and our baby!  We are truly blessed to have so much love headed our direction.

Otherwise, I have been doing better emotionally since my last post.  Baby Elise is still kicking every now and then (though she really kicks up a storm if I have ice cream!  What a great excuse to have another bowl ;) ).  For our peace of mind, we have ordered a fetal doppler online and it should arrive next week.  This way, if Elise is not moving we can quickly check for a heartbeat instead of having to rush in to labor and delivery all of the time.  It is common for babies with chromosome issues to have fewer movements.  Also, excess amniotic fluid is common with Trisomy 18, which makes it harder to feel baby's movements. 

Physically, my contractions have not really improved.  They are still just uncomfortable when sitting, but increasingly painful the longer I am standing.  Once again, I know that I am not in active labor, but it's still making every day life a bit more difficult.  I hope I get used to it soon!

I've been working on crocheting a baby blanket for Elise, and it has been very soothing.  I love thinking that someday I will be able to wrap her up in this soft blanket and snuggle her close.  Dreaming of holding her is one of my favorite things to think about these days.

"God's favor lasts a lifetime; weeping may remain for a night, but rejoicing comes in the morning." -Psalm 30.5

2014...here we go

2014 is here.

The year we will meet Elise. 

I'm supposed to be at work today, ringing in the New Year with the tiniest, and most special little arrivals in the hospital.  But I'm at home.

Last night was one of the most emotional and difficult nights I have ever experienced. 

"Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God." -Psalm 42.11

I'll start at the beginning.

Three days ago I had a big scare with Elise.  I woke up and ate breakfast.  She usually starts moving around and kicking as soon as the coffee hits.  She was still.  I tried everything to get her to move.  I drank lots of cold sugary drinks, I laid down to concentrate on her movements, I poked and prodded and tried to squish her, Matt talked to her.  Nothing would work.  Finally at 3 PM, she kicked once.  She was alive!

I have been terrified of her being stillborn ever since we found out the diagnosis.  I'm scared that she'll die and I won't even know.  I'm scared that I won't get to meet her and hold her and cuddle her while she is still with us...that I'll never get to experience her looking into my eyes.

Fast forward to yesterday.  I was working my second 12 hour shift.  I had been having frequent braxton hicks contractions all day that were regular, about 5 minutes apart, and uncomfortable but not painful.  I have had an "irritable uterus" for every pregnancy.  All that means is that I have a ton of contractions that do not dilate my cervix or cause true labor.  They're just annoying and exhausting.  So, I went about my day.  I tried to drink more water and rest when I could.  I took more snack breaks too because eating can sometimes help.  However, at about 6 PM my contractions got really painful.  Painful enough to stop me in my tracks.  I was having burning pain from the front of my stomach, wrapping around to the back.  I knew I likely wasn't in labor, but I began getting very concerned about how intense they were becoming.

At our doctor's appointment after finding out the T18 diagnosis, my doctor had asked us, "How important is it to you that your baby is born alive?"  I was shocked at the question.  It is very important!  What mother doesn't want her baby to be born alive?  How is that even a valid question?  So I said, "what?" and she repeated herself, "How important is it to you that your baby is born alive?"  She then explained that contractions and labor are often very stressful on the baby and that if we tried to have a vaginal delivery, our baby might not be born alive.  She said if it were really important to us, we should start considering a c-section.

So there I was at work.  I was having intense contractions and all I could think about was that doctor's voice, "How important is it to you that your baby is born alive?"  What if my contractions caused by my irritable uterus were too stressful for Elise?  She hadn't been moving much ever since Sunday.  Is she in distress?  Am I about to lose her?  I had already asked my doctor once to be put on maintenance medication to calm the contractions from my irritable uterus.  I was on it for one other pregnancy.  They denied me the medication, saying that my contractions weren't changing my cervix, and they didn't want me to take the medication because it can cause a fast heart rate, and I already have a chronically high heart rate.  But I thought...maybe they'll give it to me now that we know my baby girl has Trisomy 18 and a heart defect.  Maybe it could help keep her safe in my belly long enough for us to meet her.  My coworkers noticed that I wasn't doing well and had me sit down.  One of the nurses asked me how I was doing, and I completely lost it for the first time at work.  I was just so terrified that the strong contractions might be killing my baby.  I wasn't ready to say goodbye.

The next nurse that was coming in to take my assignment happened to come in early.  She took report so that I could leave right at shift change.  My coworkers have been so incredibly loving and supportive. 

Matt picked me up from work and drove me downtown to Labor and Delivery.  He went home to watch the kids.  I was a blubbering, crying mess as I was wheeled into triage.  The admitting nurse was very compassionate and found a doppler as quickly as possible to check Elise's heartbeat.  And there it was, at about 150 beats per minute.  I could finally breathe. 

The resident on for OB came in to talk to me.  She checked to make sure I wasn't dilated and then I spilled all of my concerns to her about my contractions and stillbirth and wanting to do whatever I could to meet Elise.  She said it was a valid concern and that she'd talk to the consultant on to see if we could discuss starting me on the medication to calm my contractions.  She said it was their job to help my husband and I get the chance to meet our baby alive. 

She left and came back with the consultant.  This particular doctor apparently also specializes in genetics.  She was not as compassionate.  And apparently did not feel it was her job at all to help us meet our baby alive. 

The consultant asked if I understood that babies with Trisomy 18 often die before birth, and many others die during labor.  I said yes, I understood, and wanted the medication for my contractions so that Elise had a better chance of surviving.  She said that braxton hicks contractions are healthy, and that no matter whether I had them or not, our baby was likely to die before or during labor.  She basically told me that she was not willing to risk my health at all for a baby that is going to die anyway.  She said that even if I were in active labor, she would not try to stop it because our baby is going to die.  She kept saying that she was going to die.  I wanted to scream inside.  Not every single baby with Trisomy 18 dies before or immediately after birth!  She did a bedside ultrasound to look at Elise.  They poked and poked and prodded, but Elise would barely move.  I think she wiggled a leg and that was it.  But she had a heartbeat.  The doctor did not seem optimistic.  She said that Elise looked, "ehhh...okay.  She's alive now."  But then she stressed that I need to prepare myself for her to die at any moment.  I was a mess.  I couldn't quit crying.  She thought I should stay home from work the next day due to my frequent contractions and wrote me a note for "preterm contractions."

Now, don't get me wrong.  I have seen this doctor before in clinic and really liked her.  But she is blunt and doesn't sugar coat things.  I honestly think that she was just trying to prepare me for what she thought was the most probable reality.  I think she was so caught up in statistics that she forgot that no matter what the situation, patients need to be able to keep the hope that they have.  There HAS to be room for hope in the midst of medicine, statistics, and numbers.  If there were no room for hope, then my job working with the smallest little fighters who overcome so many odds and statistics, would be unbearable.  I love my job, and I love that our doctors always make sure to leave room for hope.  This doctor last night felt that my hope was unrealistic and tried to take it away from me.  And I felt completely broken in the process.

I'm trying to pick myself back and up put myself together again, but I'm struggling.  I know that this too, will pass.  There will be many ups and downs along this journey with Elise, and this is a definite down. 

So I'll spend the rest of my day with my amazing, beautiful children and husband.  I'll take as many cuddles and kisses as I can get.  I will soak up every little bit of blessings that I can and try to talk my heart back into one piece again.

"...God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it." -1 Corinthians 10:13

Just the beginning...

Today I am 22 weeks and 3 days pregnant with our baby girl, Elise (meaning "pledged to God").

Our sweet baby girl has Trisomy 18.

I know that this is just the beginning of our journey, but it feels like we've already been traveling this road for years.  Time is funny like that.

How we got here...

• August 2013: We found out that I was pregnant again!  After losing an early pregnancy this summer, we were excited and nervous at the same time.
• December 9th, 2013:  Our anatomy scan at 19 weeks, 4 days.  We found out that we will be having another little girl!  However, the doctor saw bilateral choroid plexus cysts (pockets of fluid on the brain), and a possible heart defect.  I also noticed that our little girl wasn't opening her hands up during the ultrasound.  The doctor said that the cysts and possible heart defect weren't as concerning on their own, but together could be a sign of a trisomy or another constellation of defects.  I asked him if he thought it could be Trisomy 18 or 21.  He said possibly...but there was a 99% chance that nothing was wrong at all with our baby.  Upon later review of our ultrasound, another doctor let us know that our baby's cerebellum was also measuring a week behind at this point.  
•  December 13th, 2013: We were seen by pediatric cardiology for a fetal echo.  He determined that our baby has a moderate (2-3mm) Ventricular Septal Defect (VSD).  He stated that this is the most common heart defect, and would likely only require monitoring.  Occasionally, babies with a VSD require open heart surgery, but usually not until they are at least 6 months old.  The cardiologist also said that we would need an additional fetal echo in 6 to 8 weeks to check the heart again when it is bigger and easier to see.  Also, he said our baby will need an echo in the first day to two days after birth to check for other heart defects.  I asked if this was associated with any particular genetic abnormalities, and he said that we would need to ask our OB, but that since this was the most common heart defect, it usually wasn't.  I put in a phone call to our OB to ask how concerned we should be.  I was set up for an appointment with a geneticist and Maternal Fetal Medicine (MFM), the high risk pregnancy group of practitioners.  
• December 18th, 2013:  We first met with the geneticist.  She said that we were young and had no additional risk factors for a genetic disorder, but that choroid plexus cysts and a VSD could possibly point to a genetic condition.  She said maybe Trisomy 18,  DiGeorge syndrome, Trisomy 21, or some other genetic abnormality.  I asked her what the chance was that our baby had Trisomy 18, and all she could say was "more than 1%."  My mommy instincts have been telling me something was wrong with the baby this whole pregnancy, and the answers she was giving us were so vague that they were just more upsetting than anything.  We discussed testing options, but decided to talk more with the MFM doctor before making a decision.  We met with the MFM doctor who was overly upbeat and perky and seemed to think we were pretty low risk.  I asked about getting another ultrasound to double check for the clenched fists I thought I saw, or rocker bottom feet (both commonly seen in Trisomy 18), and she said that our anatomy ultrasound should have been detailed enough to not need an additional ultrasound.  I was about to break down at this point, knowing in my heart that something was wrong, but not having a clear answer.  My husband and I decided to just go ahead and have an amniocentesis to check the baby's chromosomes.  They told us it could be done later that day.  We went to lunch, came back and had the procedure.  We were able to see baby Elise again on an ultrasound and there she was, moving and kicking...and seemingly clenching her fists.  Matt and I both looked at each other when we saw that.  That's not a good sign.  The amnio was slightly painful, but we made it through.  Baby seemed to tolerate it just fine.
• December 19th, 2013:  We were told that we could get our FISH results back in one to two days.  The FISH results are the initial results from the amniocentesis that look only for chromosomes 13, 18, and 21.  The final amniocentesis results will take 7 to 10 business days.  I was checking the phone all day.  Towards the end of the business day, when I knew the doctor's nurse line would be closing soon, I called to check in and see if our test results were back yet.  I was told a nurse would call me back as soon as possible.  Less than 30 minutes later, I received a phone call.  I answered and it was the geneticist, not a nurse.  I knew then that I would be receiving bad news.  She told me that our baby had tested positive for Trisomy 18.  It didn't shock me...I felt like I had known that somewhere in my heart this whole time...however, it did devastate me.  It crushed me.  Trisomy 18 is generally said to be "incompatible with life."  My husband called from work and wanted to know the results....I told him.  I called family members.  I called work and told them that I couldn't come in to work for the weekend.  I was grieving too much to take care of other people's children.  I needed to stay home with my family. 
• December 20th, 2013:  We met with the geneticist again.  She explained that there are 3 different kinds of Trisomy 18, but that they expected our baby to have either full Trisomy 18 (an extra 18th chromosome in every cell of the baby's body), or mosaic Trisomy 18 (an extra 18th chromosome in only some cells in the baby's body).  95% of all Trisomy 18 cases are full, but there is no way to know which one our baby has until our complete amniocentesis results are back.  Full Trisomy 18 tends to be more severe than mosaic Trisomy 18.  We also met with the MFM doctor.  She discussed our choices with us (termination or continuation of the pregnancy), and we told her that we would, without a doubt, be continuing the pregnancy.  I do not believe in termination of pregnancy for any reason.  She explained to us that "Trisomy 18 is fatal."  She told us that even if our baby does survive pregnancy (50% of babies with Trisomy 18 die before birth), she would likely die during labor or soon after birth.  If our baby survived the immediate period after birth, she told us that she will probably die before the age of 1 year old (5-10% of babies with Trisomy 18 make it to their first birthdays, but they are often those with mosaic Trisomy 18 or those who have had significant surgical and other interventions).  
• December 22nd, 2013:  After having notified all of our immediate family of the news, we posted an announcement on Facebook.  I wanted this to be out in the open.  I felt that it would just be easier for all of us, especially since I work as a nurse with babies.  We received an overwhelming show of support from our family, friends, and coworkers.  

And here we are.  We will be having monthly ultrasounds to check on Elise.  Sometime around 24 weeks we will start to be set up to meet with other groups of medical teams that can help us make decisions about what care we'd like.  We will be meeting with Neonatology (the group of "baby doctors" that I work with every week), and the COMPASS team (the comfort care/palliative care team).  We are still struggling with which interventions and how much intervention we would like for baby Elise after birth.  Likely, we will learn more and more about her as the pregnancy goes on, and that will guide our decisions (along with many, many prayers and lots of heart-to-heart discussions between my husband and I).

This is a difficult time for my family and me.  I'm torn between complete despair and grief over the thought of burying my own child, optimism that we will make the best of this pregnancy and her life and be filled with joy, and a small bit of hope that maybe...just maybe...our girl will be one of the lucky few who survive.

I understand that only God knows which path this journey will take, but that hasn't stopped my heart and my mind from this awful ride of ups and downs....hope and despair.  I hope that with continued prayer, God will lead my heart and mind to both trust fully in Him and let go of all of the rest.

"Likewise the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words." -Romans 8.26