I am sad, I am strong.

Late Wednesday, Dr. West, the perinatologist called.  We talked a little more about baby's chromosome abnormality.  There is further testing that they want to do to determine where the split is at in baby's chromosomes but they had to have our approval before running the tests because they are so expensive (yikes!).  She did think insurance would cover them but still had to get authorization just in case.  The results of this will tell us how severe baby's condition is and will likely determine whether or not we pursue aggressive cares for baby.   We also found out baby's sex from the amnio results...but are keeping it a secret until we have a name and identify for baby :)  Sorry for the teaser :)

On Thursday, we met with our new OB doctor, Dr. Bingaman.  Dr. Bingaman was very nice but being somewhere "foreign" was a little strange and yet another reminder that everything isn't "normal".  It was nice to talk to her and find out what the next steps are.  It sounds like the OB will manage my end of the pregnancy and leave most of the baby care to the perinatologists.  If baby's tests turn out that there is little chance for survival, we will probably stay in DM and not pursue surgeries or aggressive measures.  If there is reasonable chance for survival, however, then we will start looking for surgeons.  When we settle on a place for surgery, we will likely meet their OBs and figure out a plan for delivery if all goes as planned.  Micromanaging what is supposed to be a natural event just seems wrong, but it's what is right for our baby and our situation, I suppose.  We also talked about what we might expect once the pregnancy gets a little further along.  There was talk of three separate testings every week at some point after 28 weeks and growth scans every 3 weeks.  That is all up in the air at this point and will determine how aggressively we watch the baby.

This process is hard for me.  Every bit of it.  I know I seem strong, and I am.  But I'm hurting.  If a parent someday reads this blog to help them, I want them to know that the sadness is okay and you don't always have to be/seem strong.  Some of these posts I write with tears pouring down my face.  I break down and cry, I have bad days, sad moments.  I see baby clothes at the store and my heart aches knowing I shouldn't buy them.  I see pregnant mothers and I feel envy that they are probably carrying a healthy baby and I wish I was.  I see sweet little babies and feel saddened that ours isn't going to look the same, that I won't experience the normal baby routine.  I look in the mirror and realize I'm not growing as much as I should and I feel sad.  I am sad, but I am strong.  I hope parents who go through this know you can be both at once.  I'm not a superwoman, and I know I will never be.  I'm a real person with real feelings that don't always come through a computer. 

With that, I think I shall retire for the night.  Homework for 3 hours before bed just didn't seem like the way to end the night, but updating about our sweet little baby seemed just right.    

Ring Deletion

Dr .West (the perinatologist) called yesterday with results of the amniocentesis.  What we found out is that baby has a defect on chromosome 13.  The previous test looked at chromosome 13 but only looked to see if there were three of them, which there weren't.  Baby has two chromosome 13s (which is normal) but has a defect on one of them called a ring deletion.  From what I understand, a ring deletion is where one of the two chromosomes is severed.  The severity can differ depending on where the cut is but the closer to the end, the better the outcome (everything distal to the cut is basically lost).  Given our baby's difficulties, I think we have one of the middle range to worst of the deletions.  Children with end deletions typically don't show as many problems with development.  She did say that the baby is probably going to have a significant case of mental disability, but I think this is something we expected given the abnormalities we knew the baby had.  Dr. West also told us that we have a week to terminate the pregnancy if we chose, but we have known all along that a termination isn't an option for us. 

There isn't a lot of information regarding ring deletions since it appears they are fairly rare. What I've found is scary and reassuring all at the same time.  We're still not sure that the baby will survive pregnancy but from what we are finding, chances are high that the baby will survive.  Now our heads are whirling with the possibilities of surgeries, hospitalization and everything else the baby is going to have to go through.

Getting all of this news has been a huge spin for me and Ryan.  We're realizing that there are so many uncertainties in our future.  We're going to be stressed in every way...mentally, physically, financially.  Yesterday, we weren't sure if we needed to prepare to lose a child or prepare to care for a special needs child.  Today, we're knowing that although still are both a possibility, our future is probably caring for a special needs child.  I would be lying if I say that didn't terrify us in every way shape and form.  Last month, our biggest anxiety and worry was where I was going to get a job when I was done with school and whether we thought we were going to build or buy a house.  We would hate that our life was on hold.  Even with all of that though, I would thank God, knowing our problems were small.  Today, I know that there are people facing even bigger battles than what we are. 

The last two weeks, I have struggled with the why.  I know there is one, I know God has picked us to care for this baby.  I prayed for the last couple years that I would be a better parent...maybe this is the reason.  I prayed that my husband and I would continue to grow closer to God...maybe this is the reason.  I also know that Ryan and I are some of the calmest people I know.  If something bad happens, we deal with it.  We know that about each other, we hear it from our friends and our co-workers.  I've never doubted Ryan's strength and it's one of the reasons I married him.  I've never doubted my strength.  I was a teen mother and against odds, I've made my life what I always wanted.  I am nearly done with my master's degree, which is something many people, let alone many teen mothers, can't say they've done.  I know I am strong, but only as strong as the ones who surround me.  And with my strong husband at my side, I know we're strong enough to care for this child and for anything else life throws our way...maybe this is the reason.

I hope people don't feel sorry for me or Ryan.  Although we're dealing with this, we have so many other things in our life that we are so blessed to have, things will always outweigh any negative we encounter.  We have each other.  We have amazing families, immediate and extended.  We have great friends, who are always there for us when we need them, who think about us daily.  We have a great church, filled with Christians who are helping us find our way in this sometimes un-Christian world.  We have a house that we can call our own.  We have jobs that we love. We have a God that loves us more than we'll ever be capable of understanding. 

And we have these two...Two little souls who show us that we can and will continue, two little faces who smile at us every day, two little voices who say "love you", four little arms that wrap around us and give us the most amazing hugs, two little hearts that we have to continue to nurture and show that we can handle anything...two little beings that make us carry on, even in the days we don't think we can.

Thank you to all of you who have continued to pray and support us as we walk this road and as we continue to deal with all of the hard days ahead of us.

Baby Wiggles

Last night, Ryan and I were laying in bed.  I felt baby start moving away and had Ryan feel.  Usually this ends with him saying he can't feel the baby and we both go about our day.  Last night, however, we did this familiar routine but instead of not feeling baby, baby gave him several little nudges!  Now usually, this is a fun occurrence in any pregnancy, but this is pretty big for us and this babe.  Not only does Ryan get to feel baby, but we know there's a baby in there, alive...moving...and GROWING!  Our baby is getting stronger.  In this world we're stuck in right now with no reassurance, this provides us a little glimmer.  And for that, I'm thankful. 

No test results today, but hopefully we hear by Thursday.  We meet with our new OB doctor on Thursday as well. 

One Week Ago

One week ago, my family's world was turned upside down. Last Wednesday, we went to see our baby on the 20 week ultrasound, hear that everything was normal and leave with sweet baby pictures in our hands. What happened was two of those three. We went for our ultrasound and left with sweet baby pictures in our hands. We did not, however, hear that everything was okay. Our little baby, who we'd been loving for the sixteen weeks since we knew he or she was coming, was not growing very well. I think I speak for Ryan, too, when I say we left with our heart at our toes. Two hours after the ultrasound our midwife called and said they were concerned and we had to meet with the perinatologist right away the next morning. Little did we know how the next 24 hours would change our lives.


That night, as one can imagine, felt like days. We were both undeniably scared for what the next day held. We prayed for our baby, for ourselves. We told our parents of the news but couldn't provide them any answers at that point as we didn't have any.


Finally, the next morning came. We dropped Leah off at the sitter's and off we went. We checked in at 8:30 that Thursday morning. We went once again to look at our baby, only this time in much greater detail as the sonographer looked at every aspect and angle of baby. Then, we were left to wait in a room. After what seemed like hours (although was probably 5 minutes), the doctor came in after reviewing the images. What happened next crushed our hearts, changed our lives and made us pray harder than ever.


Our sweet little baby, we found out, is very sick. Baby was measuring at 16 weeks, although we were 19 weeks and 5 days. Our sweet baby has a neural tube defect, called an encephalocele, which is a spot at the back of the head where the cranium has failed to close and a sack is growing outside of the head. They also found a heart defect called a ventricular septal defect but there could be more since we can't see the baby's tiny heart very well. Our sweet baby also had some facial abnormalities and is missing fingers on its tiny hands. Never before did I think I could feel such heartbreak but such overwhelming love for this tiny baby inside me.


The doctor offered us testing which we did. The next hour was spent prepping and doing an amniocentesis, where a needle is placed through my abdomen into the amniotic sac to collect fluid from around the baby. The doctor was suspicious of a chromosomal abnormality and this is the test that will give us answers.


The rest of Thursday was spent in tears. We had to call our parents and tell them the news. I know how hard it is to see my own children hurt so I know the pain they must have felt hearing the news. We told close friends and our church. We did all of this while being numb, in a state of shock and in between rivers of tears. I felt angry. I went through the possibility of losing a child 9 years ago when Tanner had cancer and it didn't seem fair. I felt devastated, not knowing what the fate of our child is going to be. I felt pain, knowing we had to somehow explain this to Tanner.

Several of those feelings stayed with me the next couple of days. We took the kids to Omaha and the zoo as we had already planned. We spent the days focusing on the children we had, the ones who need us as much as the one we are growing. Over the next few days, however, my husband and I started to feel a peace about our situation. On Sunday at church, one of the things the teachings for the sermon was "Faith believes in God's bigger plan". We knew this was a message for us that God wanted us to hear.


Now Ryan and I are thanking God. This may not be the path we thought we would take, but for some reason, God gave this baby to us. He is trusting that we will be the best parents for this sweet baby, in whatever time we may or may not have. We surely continue to pray for a miracle, but know that may not be God's plan for us or this baby, and that's okay. We're going to love the baby, grow the baby and cherish the baby just as we would if we hadn't had the news. Through all of this, I know that God is with us and has a plan for us. We may never know the reason that this is the plan He chose for us.

Monday we had some preliminary results that came back. The preliminary results looked at chromosomes 13, 18 and 21, which are the 3 most common ones to have abnormalities. Those three looked normal so now we wait again to see what the final results show.


And here is our baby. The one so many have prayed for, the one we are already so in love with, the one God has given us.