Background on Baby #5

               I have avoided sitting down to write this story, because I guess that writing makes it all so real.  I’ve had a pit in my stomach all day about it.  However, since I don’t want to forget the details (or maybe I sort of do?) I decided that fears aside, I need to journal what has been happening in our lives since January.  I know starting a blog for reasons like this may seem cliché, but my family has been after me to start a blog for awhile now, so I guess this is the incentive I needed?

                After 9 months of wanting to be pregnant, we finally got the good news on January 31^st that baby #5 was on its way to our family.  My due date was October 12^th which we knew would make for a crazy Fall (since we already have September 28^th, October 2^nd, and October 27^th birthdays in our house).  We were so excited to finally be pregnant though, that we really didn’t care that it would be one crazy birthday season at our house! 

                Since I was already 35, my doctor told me that there were several “advanced maternal age” screenings recommended that could help us make sure the baby was OK.  Those tests have to be started fairly early in pregnancy, so we began those with genetic counseling and several rounds of blood tests at different weeks in the pregnancy.  I wasn’t worried about any of it because there is no history of anything like that in my family, I’ve given birth to 4 perfectly healthy babies without a problem in the world, and I was just barely 35 – far too young to start having chromosome issues.

                I spent the first 10 weeks of my pregnancy feeling WONDERFUL.  I’ve never had bad pregnancies, but I always get a little sick around 6 or 7 weeks and then it usually subsides about 6 weeks later.  The fact that I went so long without getting sick made me elated and I began to be hopeful that I was just going to get to skip the sickness all together.  Unfortunately though, 10 weeks in it all hit and I did NOT feel good.  It wasn’t anything unusual for me, it just started late and never ended!  Seriously, I am now 23 weeks along and I have yet to have a day where I feel good.  I chalked it up to being so “old” that my body was just a little out of whack with everything.  It’s all worth it for a baby though!

                We have always waited to find out the gender of our babies until they’re born, but this time we decided to find out at the ultrasound.  I was really starting to bond with the baby as a girl and I felt that it would be better to just know this time around.  We didn’t tell anyone that we decided to find out, but on May 13, when I was only 18 weeks, we had our ultrasound.  Everything looked great and we found out our baby was measuring about a week behind.  They weren’t concerned about it, but I definitely thought it was odd because my babies usually measure about a week ahead of schedule.  No worries though, and the big news was that we found out that our “it” was a boy.  We were shocked but happy!  I really thought it was going to be a girl, but Brock and I just kept laughing, trying to imagine what it would be like to have 4 little boys running around the house, sharing a room and fighting over toys.  We knew the kids would be a little disappointed since they all wanted a girl too, but knew that if we prepared them well they’d be OK.  We decided to hold onto our news until we had some more time to prepare the kids, since we felt that they should know before anyone else. 

                The day after our ultrasound, as we were still adjusting to the news that #5 was a boy, I got a call from the genetic counselor.  She informed me that they had some results back from our screenings that were somewhat concerning.  She told me that our baby had a “High Risk” of having Down’s Syndrome (1 in 10 chance) or Spina Bifida (1 in 12).  I found out later that this result was extremely unusual and puzzling, because usually the indicators for one are the opposite of the indicators for the other.  (In technical terms, alpha feta proteins measured in the mom are usually high for Spina Bifida and low for Down’s Syndrome, so we still don’t know how I got a high risk classification for both).  She said at this point it was up to us – we could have a specialized blood test that would tell us if it was Down’s, we could wait 2 more weeks and do a 20 week, level II ultrasound to look for “soft markers” of problems, we could do an amniocentesis which would tell us exactly what the problem was but that comes with a risk of miscarriage, or we could do nothing.   I told her I would need some time to talk with my husband and figure out what to do.

                The rest of that day was pretty horrible.  I spent the whole time trying to imagine what my life would be like if our baby really had one of those issues.  I wondered how my life would change if I had to take care of a special needs child for the rest of my life.  I know that there is a special, special spirit to those kids, but it also just scared me.  Brock and I talked, cried, and prayed a lot about it and felt confident that everything would be fine BUT we also acknowledged that our definition of fine is not always the same as Heavenly Father’s definition.  We decided to do the blood test and schedule the ultrasound, since those were the least invasive options and would hopefully help us to get some type of answer as to if there was really anything wrong.  We had to wait until the 30^th of May to have the ultrasound, but they took the blood sample right away and then we waited and waited and waited on results.

                In the meantime, I spoke with my OB doctor and she was very reassuring, which was nice.  She told me she had had patients with far worse odds (1 in 2 chances and 1 in 4 chances) and their babies had been fine.  She also reminded me that I’d already had one ultrasound and while it wasn’t as detailed as the one I was waiting to have, it didn’t show any abnormalities. These results were based strictly on things they had measured in me, specifically my hormone levels and age, so I felt a lot better about things after talking with her.  I was still in agony imagining all that MIGHT be wrong while we continued to wait the 2 long weeks for more information.

                Brock and I spent a lot of that waiting time worrying and trying not to feel too helpless or hopeless.  We have great faith in God’s plan for us, so whenever the feelings got too overwhelming, I found myself searching the scriptures or praying my heart out to Heavenly Father.  I asked for peace, strength, miracles, and an ability to focus on what we knew instead of on all the things we didn’t know.  Brock gave me a blessing, and a few days later our home teacher came and gave us both blessings.  While those blessings didn’t promise a miracle, we were given great counsel and most importantly, peace.  Our faith continued to grow as we were reminded of Heavenly Father’s great love for us and felt assured that this was all part of His plan for our family. We went to the temple a couple of days after finding out our high risk classification and I was overwhelmed by the peace, assurance, and strengthening I received there.  I literally felt endowed with power from God to be able to handle this trial.  Brock and I were reminded of covenants we made a long time ago to sacrifice and consecrate our lives to Heavenly Father’s will.  By the time we left the temple that night, I felt incredible peace and could easily echo the words of Mary:  “Behold the handmaid of the Lord; be it unto me according to thy word.”  I knew I could ask for a miracle but I also knew that if the Lord’s plans were different, I would willingly accept whatever was in store for us and this baby.     

                Finally on May 29^th, we got news that the baby did NOT have Down’s Syndrome.  I felt so relieved and grateful to have one thing eliminated from my list of worries!  My ultrasound was the next day (May 30^th) and I was pretty confident that things would look fine.  Gage’s end of year party was at the same time as the ultrasound, so I made sure Brock could go to that with him while Trayson and I went to the ultrasound. 

                The ultrasound took about an hour and the nurse chatted with me while she isolated each body part and took pictures of everything she could.  She assured me that usually they can tell in those ultrasounds if there is an open neural tube defect such as spina bifida so I felt pretty confident as she zipped through everything that everything was just fine.  She finished up and walked out of the room and then the high risk doctor came in.  She immediately asked me if I had been screened for Cystic Fibrosis.  I couldn’t remember if I had or not and she said that there was one little thing that hinted at that possibly being a problem but it wasn’t likely.  I still felt pretty relaxed about everything until she started going into more details. 

                Basically, there were 3 problems that showed up on the ultrasound that weren’t necessarily bad, but were definitely red flags.  The first was that the baby was not measuring at the right size.  At almost 21 weeks, the baby was measuring about 19 ½ weeks.  This wasn’t necessarily a bad thing, as long as the baby continues to grow at a steady rate, but it was definitely something that would need to be monitored.  The second problem was that the baby had echogenic bowels.  Basically, bowels are supposed to look black on an ultrasound, since they’re full of liquid, but his bowels looked white.  This was what made her ask about Cystic Fibrosis, because that’s one of the issues often related to this.  It could also be something small like the baby swallowed blood at some time during his gestation.  Again, not necessarily horrible, but definitely unusual.  The final problem was that his kidneys were holding too much fluid.  I don’t know much more about this one, other than that again, it could be a sign of something bad but it could be nothing at all. 

               All of this together, plus the unusual result that I was high risk for both Down’s and Spina Bifida,  made the high risk doctor concerned about what was going on.  She spent the next hour explaining possibility after possibility. I heard many options such as Cystic Fibrosis, some totally random other genetic or chromosomal problem, possibly still birth, premature birth with developmental delays the rest of his life, and finally the possibility that they would have to induce early to save the baby’s life and then hope it’s at least in the “viable” window of 24 weeks.  

                What it all really comes down to is this:  it’s not so much that the baby is small that is a concern.  The concern is what causes the baby to be so small, in this case, a placenta that is not working properly, thus depriving the baby of the nutrients it needs.   The doctor said that usually when something like this happens, the placenta eventually starts pumping blood backwards from baby to mom, and at that point the baby will almost certainly die if they don’t get it here.  Hence, the reason to possibly induce me and hope that baby is viable.  To add to the problem though, is if the baby is extra small, they can’t even intubate it because the baby’s body is too small to support the tubes and other equipment necessary to sustain life. If the placenta can hold out long enough things won’t be TOO bad.  Unfortunately, from what the doctor is saying, the placenta doesn’t usually hold out long if this is the problem, and then we are forced to deliver a baby far earlier than it is ready. 

                I called Brock at Gage’s party and explained everything, and we decided to have the amniocentesis to at least try to get more answers that would help us solve the problem.  The doctor told us she would continue to monitor the placenta as often as she needed to and that right now we just needed to hope the baby would grow.  With that we had to go home and wait some more.

 

               The next 2 weeks were more agony while we waited on results of the amniocentesis and prayed and prayed and PRAYED that the baby would grow.  Deep down though, I was concerned.  I’ve thought all along that I should be bigger than I am.  I’ve felt the baby move now for about 2 months, but Brock has still hardly been able to feel the baby move from the outside.  I can still lay on my stomach, and even when I’m on my back I can hardly feel the weight of the baby on my spine like I usually can by this point.  I absolutely believe in miracles though, and while I didn’t know what the Lord’s plan was with regards to this baby, I knew it was absolutely possible for everything to be just fine.  I had an appointment with my regular doctor on Monday, June 10 and another ultrasound with the high risk doctor to monitor the placenta on Tuesday the 11^th.  I felt like these appointments would be able to tell us SOMETHING.  Most importantly I hoped that the baby would have grown!

                On Monday the 10^th I met with my OB and we talked more about all the possibilities for this baby.  I was sad to find out that even if things worked out for this baby to survive, the fact that he had been deprived of blood and nourishment during those formative times in the womb meant that he would probably be developmentally delayed and struggle for his whole life.  This was heartbreaking to me, that even if he really was growing and we didn’t see any more problems, the likelihood of him leading a “normal” life was very slim.  After we talked about several options, she pulled out the tape measurer to measure me.  This was the all-important moment I had been waiting for and praying for good results.  She measured the height of my fundus and said “By this point in pregnancy, the fundus is usually up over the belly-button and yours is still down here below.  At 22 weeks, you’re measuring 18 weeks.”  I asked her what I measured at my last appointment 4 weeks ago and she told me I was the same 4 weeks ago as I was that day.  So basically, I hadn’t grown at all.  I was absolutely crushed and heartbroken!  While this measurement is not entirely accurate, it’s still a good way to assess how the baby is doing.  And for me, I am usually measuring AHEAD of schedule – definitely not behind and DEFINITELY not four weeks behind.  At that moment, it all became clear to me that this pregnancy was very likely going to end in one of three ways: a still-birth, a very premature birth that the baby would probably not survive, or a premature birth that would be survivable but leave our little boy with very little quality of life.  For the first time, I had the thought that it was time to pray that our little boy’s spirit could be released from his body so he could go home to his Heavenly Father.  I can’t say that this thought was a prompting from Heavenly Father, or if just seemed like the least scary option, but I can say that that was the first time I felt any real and lasting peace about the future since all these test results started coming.  The thought broke my heart, but knowing what his life will probably be like here on earth breaks my heart even more. 

                Brock and I both went to my ultrasound the next day, expecting some sort of definitive answer as to what we were really looking at.  I thought they were going to measure the baby again and plot his growth on the growth curve.  It turns out though, if they measure the actual baby within a 3 week window of their last measurements, it can lead to false results.  I don’t really get that, but I guess basically, they can only be so accurate when they’re measuring through an ultrasound.  The point is though, they didn’t measure him at all.  All they wanted to do was monitor the placenta and make sure it was still working.  My doctor was pleasantly surprised that it was still doing what it was supposed to do and seemed fairly optimistic.  Don’t ask me how you can be optimistic when you’re only 22 weeks along and your doctor is surprised that the placenta is still functioning!  We discussed more possibilities and I asked her some very tough questions.  At this point, my concern is all for his quality of life if he survives.  Yes, the “viable” time is 24 weeks, but what does that really mean for his life down the road?  I don’t want them to go crazy saving his life if he’s going to be tortured doing it and then left in a near vegetative state.  I asked what our rights as parents are with regards to this issue.  If we have to induce this baby at, say 29 weeks, do we have the right to tell the doctors to leave him alone and let nature take its course?  The doctor said that unless test results come back proving that the baby will not live out of the womb anyway, then we do not get a say.  It is up to the NICU doctors to do whatever they can to save a baby’s life.  I know this may seem horrible of me, but to me this is really bad news!  If he is born so early that attempts to save his life leave him in a worse condition, then I want him released from his body and pain, and I think as a parent I should have the right to decide that.  Someone may think this is like abortion, but I totally disagree with that assessment!  Abortion is playing God on one side of the womb, and going to these great lengths after birth is playing God on the other side of the womb.  Please understand that I am not against medical intervention if it can save and improve his life!  It’s just that from what they’re saying, he could come in such a bad state that attempts to save his life may negatively affect the quality of that life.  If we had lived 15 years ago and he had been born in such an early window, they wouldn’t have been able to save his life anyway, so I just feel like if the situation is bad enough, we should be allowed to let nature takes its course. 

                The one good thing from this appointment, was that we got back the initial results from the amniocentesis.  All results so far are negative.  They are doing one more round of tests where they look at each individual chromosome and check for mutations and deletions, but at this point we know that there’s probably no genetic reason this is happening.  We should have full results back in a couple of weeks, so again, more waiting.  We probably won't know what is going with our baby until after he is delivered and they can run tests on the placenta.  If there are truly no chromosome or genetic issues going on here, this  means that IF (and that is a huge IF at this point) we are ever brave enough to try having another baby, the likelihood of this occurring again is very small.  My doctor said she really doesn’t think that any of this is age related – that it’s just a “lightning bolt” without explanation or reason.  We have always planned on having 6 kids, but at this point we’re scared to death of doing this again, so that decision will be made down the road after lots and LOTS of prayer and fasting. 

                So that brings us to where we are now: more waiting, wondering, and trying to stay positive.  Overall, we really are doing OK.  This has been going on so long now that we’ve kind of adjusted to the haze of waiting for bad news and most of the time we move forward, a little slower than usual, but still forward.  After a doctor’s appointment or whenever we get new news, we have a few really bad days with lots of tears and sadness.  Then we kind of fall back into a holding pattern and wait to see what our future holds.  As it has become apparent that things are not going to be what we hoped, we have decided to start telling people.  Our family members have known since it all began but we haven’t told the kids yet or any of our friends, other than our home teacher and our stake president.   As things progress (or digress?) we are going to really need extra help, and since we don’t have any family around here we will need to turn to our church family.  It is hard to be in this position, especially with Brock serving as the bishop right now.  I feel like his calling as bishop means it is our family’s turn to serve others, and yet we will very likely be in a position where the church will have to serve us.  I’m grateful we will still have many opportunities to serve though, because that is a welcome distraction when things get hard.

                I want to end today by sharing some of the tender mercies we have experienced already through this experience.  First, I have absolutely no doubt that Heavenly Father is aware of us and is quick to answer our prayers for peace and help.  I trust His plan, even when it is hard and doesn’t match up with what my plans may be.  My sister-in-law sent me an awesome excerpt from an article by Laurel Christensen that I love and absolutely agree with:

 I had an experience a couple of weeks ago that was a game changer.

Do you know the kind?
When things feel turned upside down?
And the next day I was sad and confused and unsettled and worried.
That night one of my favorite people on the planet said something so profound, so simple, so true:

"Your future isn't any different today than it was yesterday." 

That was it.
Period.
End of discussion.
End of the tears.
And I woke up the next morning enveloped in the most unbelievable peace. 
We each have a story.
And while we can do things to alter that story,
And while others can do things to alter that story,
God is the editor.
He intervenes when He needs to.
He adds a sentence here and there.
He erases.
He fixes.
But the story is all part of His plan.
And I simply do not believe in a God who turns a page and gets surprised.
I do not believe, for example, He spent any time last week saying, "Wow. I'm shocked. This is so not how I thought this was going to turn out for her." (And not just because God wouldn't use "so" like that.)
No.
Rather I believe in a God, my Heavenly Father, who is so involved in every detail of my life that He spent time this entire last year orchestrating things in such a way to have them play out exactly how He needed them to.
Exactly how He knew I needed them to, too.
He intervened as needed.
He added a sentence here and there.
He edited.
To get the story just right.
When I can let myself believe it, I feel the deepest sense of peace.

There is a plan for your life.

There is a story that is yours.
JUST. YOURS.
And your story is where it's supposed to be.
The chapter.
The page.
The very words.
He knew exactly where you'd be right now.
And the beautiful promised ending of your story is already written.
Your future isn't any different today than it was yesterday.
And, oh, that future is good.
SO. GOOD.
I promise that is true.

                Another tender mercy from Heavenly Father is my amazing, wonderful, perfect husband, my 4 beautiful, amazing, and wonderful children who came to me without one single problem, and my amazing and truly supportive extended family.  When I start to get sad, I look at them and wonder what I have to complain about!  I am truly SO BLESSED and there are so many others who have things SO much worse than I do!  My family makes all of these things bearable!

                I am overwhelmingly grateful for the peace that the gospel brings.  There have been times when I have been so filled with anxiety and fear and I have felt nearly overwhelmed by darkness.  During those times, I have locked myself in my room, knelt in prayer, and read my scriptures.  When I do these things, the darkness is ALWAYS overcome by the light of the Spirit that I feel.  I have received such personal messages from Heavenly Father, and I absolutely know He is with me through this, and will continue to be with me when things get even harder!

                I will end by sharing part of my scripture journal from a couple of weeks ago.  I had started reading the Book of Mormon again from the beginning, and told Heavenly Father I didn’t even know what to look for.  I asked him to just guide me to what I needed to know.  In 1 Nephi 2, a prophet named Lehi is commanded by God to take his family and leave Jerusalem to go into the wilderness and eventually end up in the “Promised Land.”  He leaves behind his home, riches, material possessions, and way of life and takes with him his wife and children, namely 4 sons named Laman, Lemuel, Sam, and Nephi.  Here’s an excerpt from my journal about what I learned:

                I can really identify with Nephi, Laman, and Lemuel in this chapter right now.  They are being asked to give up their whole way of life to follow the Lord.  Everything they have ever known is about to become lost to them forever as they leave everything behind and go into the wilderness.  None of them want to do it, but while Laman and Lemuel complain, Nephi goes to the Lord until his heart is softened.  This gives him the strength to face a scary, unknown future and trust that the Lord prepared a place for them that was choice above all other lands. 

                As we wait for test results on our baby, I am afraid for what the future holds.  Will this baby be able to move, talk, act, or think the way “normal” people do?  Will this baby live or die, and if he lives, what will his life be like?  What will my life be like?  I am afraid of all the ways my life might change!  I feel like Laman and Lemuel – I don’t want to give up my way of life!  I don’t want to have to leave behind everything I’ve ever known and have to face a world revolving around a child with special needs!

                At the same time though, I feel like the Lord is visiting me and softening my heart, just as he did with Nephi.  I don’t know yet what my future or this baby’s future holds, but I do believe these words from the Lord to Nephi:  “…ye shall prosper, and shall be led to a land of promise; yea, even a land which I have prepared for you; yea, a land which is choice above all other lands.” (1 Nephi 2:20)

                If my future includes a losing this baby or raising a special needs child, I know it will be hard.  But in the end, I know I will also be so grateful for all the ways this trial will bless me, change me, and help me be the person Heavenly Father wants me to be.  Whatever my future is, I know it is a life prepared especially for me by my Heavenly Father!

 

               If you are still reading this very LONG blog post, then congratulations to you for getting through all that!  Thank you for your love, support, and prayers at this difficult time.  We love you and are grateful for your love and friendship!