35 weeks! Ultrasound and appointment.

We made it to 35 weeks!  I am 35 weeks and 2 days pregnant today!

On Friday we had a detailed ultrasound and then doctor's appointment.

Cute little baby feet!

I love this picture of her face.  You can see that she's getting some precious chubby cheeks!

She seems to like having an arm up by her head.

Overall, she looked pretty good.  The doctor who measured her last week was just doing a quick bedside ultrasound, so he probably mismeasured a bit.  This ultrasound showed her to weigh approximately 4 lbs 6 oz.  Her stomach and femur were both measuring really small for her age.  She was placed into the 3rd percentile for weight.  This is her lowest percentile measuring yet, and she is definitely growth restricted.  We are okay with the news, and actually expected that last week's ultrasound might not have been completely accurate.  My amniotic fluid level was 24 cm (They want it under 25), so that's still looking better than last month.  They did doppler blood flow measurements, and they all looked wonderful!  This means that the blood flow from me to her appears to be adequate at this time.  We really enjoyed this longer ultrasound and the chance to see our little girl moving around and reacting to the pressure from the ultrasound wand!  Matt noticed that we had the same ultrasound technician that we had at our 20 week anatomy ultrasound.  He was able to thank her for the amazing job that she did catching Elise's VSD.  If we hadn't of found the heart defect, and just saw the cysts in the brain, we would have never done any additional testing to find out that she has Trisomy 18.  Although this has been a difficult journey, I feel blessed to have found out when we did.  It has given us a chance to prepare for multiple scenerios, and to bond in a very different way with Elise. 

After the ultrasound, we met with a Maternal Fetal Medicine doctor.  She felt that the ultrasound went well and that Elise was progressing as expected, even though she dropped percentiles in weight.  We made a plan for the remainder of the pregnancy at this time (whoa! you know we're getting close when we can make these plans!).  From here on out, we will have testing and appointments with MFM at least weekly.  We will be having a biophysical profile (BPP) every week, followed by a Non-Stress Test (NST) if the BPP result comes back too low. 

A BPP is an ultrasound where the technician is screening for 4 different things.  The BPP is scored by giving the baby 2 points for each item, with a highest possible score of 8.  They will be checking for 1)adequate amniotic fluid, 2)practice breathing, 3)large movements (such as turning, rolling, moving an arm or leg), and 4)movements showing tone (such as opening or closing the hand, or moving the head at the neck).  If the score is 8, we will be done.  If the score is 6 or less, we will move on to an NST.  An NST monitors the babies movement and heart rate.  It specifically looks to see if the baby's heart rate responds appropriately to movement.  It also monitors overall heart rate and contractions. 

If  the testing shows that Elise is possibly declining, we will discuss induction.  Induced labor, however, is  more difficult on babies than natural labor.  The contractions are often stronger and closer together, giving the baby less time to recover between contractions.  Also, any time you try to force the body into labor before it's ready, you face an increased risk of the induction failing and labor not progressing.  For this reason, we would much rather I go into labor naturally when my body is ready.  We stopped my contraction medication, and have decided that we will not do anything to discourage labor from here on out.  I carried my son 1 day past his due date, and my daughter until one day before her due date.  It is completely possible that I will not go into labor naturally before my due date.  We are leaving it up to God and my body at this point, and would be thrilled if I went into labor on my own before we felt the need to induce. 

In the meantime, I am in full nesting mode!  My husband woke up to a long "To Do" list on our white board, and a waddling pregnant wife trying to cross off as much as I can in between rest and snack breaks.  I am finally getting that wonderful excited feeling that generally hits me towards the end of my pregnancies.  The anticipation, the hopes, the daydreams of how it will all happen and what it will be like when she is here.  :) I am one happy (and nervous at times) mama!

Here are some pictures that my wonderful husband took before our appointment.  Ainsley was not interested in the photo shoot, but Isaac was cheesing it up as usual!

"Be joyful in hope, patient in affliction, faithful in prayer." -Romans 12.12

34 weeks! :) Wonderful news from the doctor today!

I am 34 weeks and 1 day pregnant....wow!  I can't believe how fast the end of this pregnancy is going!

It's been a few weeks since my last update.  Not too much has happened with the pregnancy.  I had an appointment at 32.5 weeks.  We did a quick bedside ultrasound to check for umbilical cord flow, and it looked good. 

As we're nearing the end of the pregnancy, a whole new set of feelings have been popping up.  We are so happy for Elise to have made it this far, but have heard countless stories of babies with Trisomy 18 making it to full term, only to pass away suddenly and be stillborn.  Somehow, that seems even more heart-wrenching, because if we were to deliver her now, she wouldn't be that premature.  "Normal" babies do well at this gestation with a little help.  So we've been thinking about that.

Also, I am starting to feel some mommy guilt about not having enough prepared for Elise if she does come home.  I know that some mommies of babies with a poor prognosis go all out--they set up a very special nursery, wash all the baby clothes, get everything and more ready.  That's not me.  Matt and I have a few things for Elise.  We have the blanket that I made her, some clothes, a Bible to put her foot/hand prints in, a rosary, and a few other little things.  We thought it would be easier to run out and buy diapers and whatever else we might need and get the house ready for Elise when the time comes if she is actually able to come home with us.  I just don't want to come home to a completely decorated and stocked nursery that we won't get to use.  But the nesting instincts are kicking in, and I feel badly at times for not having a special place all ready for her.  But you know what?  She will be loved, cuddled, and taken care of, and that's all that matters to her!  She won't care if her nursery is perfect or if she has 100 different outfits to wear.  None of that is actually important.  And if we get to bring her home, I'll probably be too busy loving on her to care much either.

Another feeling we've been dealing with lately is the "oh my gosh this is real" feeling.  One way or another, we will be meeting our baby in the next 6 weeks!  We will be holding her and looking at her and all of the what if's will start to actually play out.  It's happy, exciting, and terrifying all at the same time! 

So, back to the worries about Elise being stillborn.  I understand that if it is God's will, it will happen.  However, we would still like to try our best to meet her outside of my belly while she is still alive.  This week I have noticed a definite change in Elise's movement patterns.  There was a day that I didn't feel her at all until night.  Even then, it wasn't much movement.  Overall, her movement decreased significantly.  Also, times when she is normally active, such as after a meal or at night when I resting, she wasn't moving.  I was checking her heart beat on the doppler, and also noticed that at one time, her heart rate decreased to 90-100 beats per minute for probably at least 2 minutes before returning to baseline.  I was concerned that something was going on with Elise that maybe we didn't know about yet.  So, I called and set up an appointment for this afternoon.

Well, the appointment went great!!!  The doctor said that we could choose to induce at any time if we were worried about stillbirth, but we requested to just check up and see how she was doing before making any decisions.  He did an ultrasound, and Elise looked wonderful!  She has gained weight to the point where she is no longer considered growth restricted.  She is measuring in about the 10th percentile.  Her estimated weight was 4 lbs 5 oz!  She measured an average of only 7 days behind where she should be at this gestation.  Also, my polyhydramnios was resolved.  My amniotic fluid levels were back within the normal level!  She also moved some during the ultrasound, which was great to see.  Since Elise actually showed improvement instead of decline, Matt and I were happy to leave the appointment without any further talk of induction. 

I feel much better after having that little check up.  I think we'll probably aim for weekly appointments now that we're nearing the end.  The doctors don't mind, and it really helps us stay positive when we can see for ourselves that Elise is doing just fine!  I truly believe that all of the prayers have been working and helping our little Elise grow stronger every day.  Thank you all for your continued love, support, and prayers.

This wasn't meant to be a downer post.  We're actually doing pretty good.  But in writing this blog, I hope to not only share updates with family and friends, but to also show a true picture of what it's like to carry to term a baby with trisomy 18.  I don't want to sugar coat the experience, because I shouldn't have to.  I want other mommies to know that if they are going through this, it is normal and healthy.  I want family members and friends of people going through this to be able to have a glimpse into what their loved one might be feeling.  I want to be an honest advocate for babies like Elise.  No, this isn't easy.  But it's worth every single second. 

Isaac (3.5 years old) with his beloved sister, "Baby 'Lise" at 34 weeks!

"You have turned my mourning into joyful dancing.
    You have taken away my clothes of mourning and clothed me with joy, 

 that I might sing praises to you and not be silent.
    O Lord my God, I will give you thanks forever!" -Psalm 30:11-12

31 week Ultrasound and Appointment! Good news!

Our beautiful Elise at 31 weeks!

On Friday we had an ultrasound and appointment.  It went great!  The ultrasound was so much fun.  Elise was moving all over the place.  And we got some wonderful news, too!  Elise's estimated weight is now 3 lbs 4 oz!  She measured in the 9th percentile!  The ultrasound technician even had another sonographer come in and measure her again to make sure it was right.  The reason that this is such good news is that at her last ultrasound about 3 weeks ago she was measuring in the 6th percentile.  With IUGR (growth restriction), they typically expect it to stay steady or get worse.  However, our Elise threw them a surprise and moved up in growth percentiles instead!  

Everything else with Elise looked the same.  We could still see her heart defect, but again, no new defects were seen.  

They did, however, see on ultrasound that I have developed polyhydramnios (excess amniotic fluid--the fluid that surrounds babies in the womb).  I have tested negative for gestational diabetes, which can sometimes cause polyhydramnios.   Our doctor explained that the reason excess amniotic fluid typically builds up is due to the baby not swallowing a normal amount of amniotic fluid.  Babies usually swallow amniotic fluid and also urinate to build up amniotic fluid.  When they aren't able to swallow, or don't swallow as they should, but continue to urinate (because her kidneys are working), amniotic fluid builds up to higher levels.  The doctor said that this could indicate some sort of problem developing in Elise's GI tract, but that they couldn't tell for sure at this time.  I've also read that sometimes the babies stop swallowing as much due to abnormal brain development, which is also a possibility due to her Trisomy 18.  We will continue to monitor my fluid levels monthly, or sooner if I have increased discomfort or go into true preterm labor (which is associated with polyhydramnios).

Otherwise, everything looks great!  My blood pressure is under control, and I've been doing better with the 8 hour shifts at work.

Emotionally, I feel like Matt and I have come to a very peaceful place.  I truly believe that my daily prayer to God to help Matt and I find peace with His plan for Elise's birth, life, and death has helped guide our hearts to where we are now.  God is listening!  I feel like I can relax and enjoy this time with Elise much more than I had been able to before.  I don't rely so much on my doppler to check on her heart beat, and instead just sit quietly waiting for her to move.  I feel like I had so much anxiety surrounding the situation and trying to control it, that I forgot that ultimately, God is in control of this entire situation.  I feel like we can relax and trust that God will bring Elise into this world in the exact way that she is supposed to.  If it's next week, then it's next week.  If it's in two months, then that's when it will be.  Whether she comes out crying, or silent, her life will be exactly what God intended it to be.  There is not much that we can do to change that.  Instead of worrying about changing the situation, we have switched our focus to cherishing every wiggle and kick.  We talk to her and sing to her.  We prepare for her time here with us and discuss what things we would like to do with her when she gets here, no matter how that happens.  We still cry and worry about things here and there, but overall we are just...peaceful.  

I would like to say thank you again for everyone's continued support and prayers!  We are so blessed.

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." -John 14.27