Wednesday, February 1, 2012

January 18th, 2012. Our Life Changing Day

24 weeks along into our pregnancy, my husband James and I (along with our 23 month old son Jeremiah) went in for a routine follow up ultrasound. We walked in anticipating more pictures of our little baby boy and good news about resolution of a subchorionic hemorrhage (SCH) that has been plaguing the entire pregnancy.  A SCH is a pocket of blood that forms between the sac the baby is in and the uterus. We left the ultrasound feeling overwhelmed and scared at what we found out.  I'll try to give the simplified run-down without getting too bogged down in medical details.

1. The subchorionic hemorrhage had grown significantly, infiltrating into the placenta.

2.  Placenta insufficiency and abruption. Because of the hemorrhage, the placenta isn't attached appropriately to the uterine wall, so it is difficult for the nutrients to pass from me to the baby as well as they should.  There are also little black spots all over the placenta on ultrasound, a sign that the placenta isn't healthy. The same appearance is commonly seen in babies with "lethal" chromosomal abnormalities such as trisomy 13 or 18 or bad infections.

3.  No nasal bone. This is a common indicator of Down Syndrome. It is seen in 80% of Down's babies and only 1% of normal babies. 

4.  Intrauterine Growth Restriction (IUGR), meaning the baby is too small, < 3%, the size of a 22 wk old (440 grams or less than 1 lb). This could be due to a chromosome problem or the problems with the placenta.

5.  The most ominous sign of all:  Absent End Diastolic Flow. This is a problem with the blood flow through the umbilical artery. Basically, there is a momentary stasis (stoppage of flow) with each heart beat. This will eventually progress to a longer pause in flow to the point that the flow reverses in the wrong direction and compromises the health of the baby. This process may take weeks or days and has two end outcomes: delivery by c-section or stillbirth if no medical intervention is performed.

Blindsided with all of this new information, we had to make some tough decisions on this day about how aggressive to be with the little peanut who wasn't (isn't!) ready to leave my womb yet.  My care was quickly transferred to the maternal fetal medicine (MFM) specialists and classified as "High Risk." We spoke with another MFM doctor, a genetic counselor and neonatologist, and every outcome was very bleak.  I asked if there is any chance I would carry this baby to term, and the doctor looked at me as if I had three heads and said, "No way.  We'll be lucky if we can get you to 28 weeks. You may not even make it to this weekend."  We were told that this baby may need to be delivered within the next couple of days because they couldn't determine how quickly the blood flow problem could deteriorate.  The neonatologist gave us mind numbing statistics.  There is only a 40% chance an IUGR baby delivered at 24 wks will even survive. Of those that survive, there is a 100% chance of mental retardation, blindness, deafness, and malfunction of every major organ system. 

While in the waiting room, I picked up a parenting magazine, looking for some good fluff reading to try to take my mind off things.  The first thing I opened up to was a letter a reader mailed in saying her son was born at 24 weeks, and he was in the NICU 83 days and then died.  I later realized God put that message in my hands at that moment for a reason.  It became clear to me that I couldn't subject this sweet baby to that kind of life, and James independently came to the same conclusion.  James and I are both doctors, so don't get me wrong.  We know the importance of utilizing modern medicine.  But at what point does it become torture?  What kind of a life would we subject this baby to?  What if God just wanted us to peacefully love this baby for a few moments of life before giving him back to our Heavenly Father?  Who are we to "play God" to try to extend a life that may not have been meant to live?  So many questions rushed through our minds.

Much later, we were finally given peace when we realized we were putting too much pressure on ourselves to decide whether to try to save this baby or let him pass away peacefully.  Who do we think we are?  As if we have any say in the matter of whether he lives or dies!  God has this child's days numbered, whether it's measured in days, months, years, or decades.  We have no control over that.  As long as we are prayerfully aligning ourselves with His plan and seek His guidance every step of the way, we have nothing to worry about. 

Psalm 139:13-16  "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made...All the days ordained for me were written in your book before one of them came to be."

Ultimately, we decided to go home on strict bedrest after getting an amniocentesis to look for chromosomal abnormalities and other potential problems.  We realized our most feasible, as well as "best case scenario," was Down Syndrome.  I wasn't worried about that.  While it isn't the first plan we dreamed of for our baby, it was very acceptable. I have never met a Down Syndrome kiddo that I hadn't fallen in love with.  I would be honored to parent such a lovable child!  Our "worst case scenario" seemed to be what they kept referring to as the "lethal" chromosomal disorders, Trisomy 13 or 18, because most of those babies die shortly after birth.  While that would be devastating, we didn't see it as too unbearable.  My niece, Callie, has Trisomy 18 and is one of the rare cases of survival, and she is such a joy.  I love her so much, and I just can't get enough of her.  So if that's the worst it can get, we can handle it! 

We waited it out over the weekend, soul searching, praying, and garnering prayer from friends all over the world.  Knowing there was nothing for me to do besides bedrest, I decided to be the best bedrest patient ever, giving it 110% and trying to make it 23 hours a day, beyond the prescribed 22 hours of bedrest.  We called in the cavalry, and James' family came down from Denver right away to help out, and my mom and dad soon arrived from Minnesota, canceling their annual month long snowbird trip to Florida to come help us.  The ladies from my Bible studies immediately stepped up with prayer and encouragement and a meal delivery schedule, so our family has been well fed right from the start.  We couldn't ask for better support! 

It is now two weeks later, and we passed the 26 week milestone (26 weeks + 3 days, but who's counting?).  Our preliminary amniocentesis results came back as normal, so there are no chromosomal abnormalities, which shocked the experts.  The secondary results relieved us from any concern with infections. There were a couple of confusing positive results (for those who want to know, AFP and ACHE) which have stumped the doctors and geneticist, but everyone feels these are most likely false positives because they don't correlate with the baby's normal organ appearance on ultrasound.  I will, therefore, not get concerned about that. 

I go in for monitoring every Monday, Wednesday, and Friday with my suitcase packed each time, ready to stay in the hospital if the blood flow issue takes a turn for the worse, which could happen at any point.  The baby's growth can only be measured every three weeks, so we aren't sure how he is growing, but they are watching the bloodflow closely.  So far, after six scans, bloodflow has remained abnormal but stable, and the baby doesn't appear to be in any distress.  He is moving like a champ, entertaining me with each kick and cheering me on to be diligent with bedrest.  Praise the Lord!  We just continue to pray that he will stay in my womb as long as possible.  We celebrate each day that he remains in utero.  Please continue to pray with us for the health and growth of this sweet baby.  We found out that in rare cases, the blood flow can improve as the baby gets bigger, so we are praying we will be one of those rare cases.  For now, we're just happy every time they let me go home after a check up.  As one of my friends put it so well, status quo is a good thing.  No bad news IS good news!


  1. Karyn- your post has tears in my eyes. I love the faith and hope you have that will no doubt get you through anything that might happen. My water broke at 30 weeks with my girls although I didn't deliver until 33w 5d (yes, I do know how important EACH DAY is). I remember the fear and the worry- and then the ultimate peace that I wasn't in charge. I did 26 days in a hospital bed only getting up for the bathroom before they arrived. I will keep you and your little guy in my prayers that you can continue on this bed rest journey. Each day is huge- grow little man grow! lots of hugs from MN
    Angie Kalthoff (Olson)

  2. Hi Angie! My first comment! :) Your encouragement means so much to me. I love that you had such a great outcome with your beautiful girls! Thanks for sharing!

  3. I will keep up with your blog as I continue to pray pray pray. Your faith is inspiring. Will pass this on to Paul and the moms too!

  4. Loved reading your blog! I can't imagine you staying in bed for 23 hours a day, but I know, as a new mom, I would do anything for my son! I highly recommend streaming Netflix and watching comedies. You can watch 138 episodes of How I Met Your Mother! I did that during late night pumping sessions and it was great! Thinking about you!


  5. Karrn, every time I read the details you've written, I get a knot in my throat and am brought to tears. It is nearly EXACTLY what happened when I was pregnant with Paysen, but we had no idea it was going on. He was born at 39 weeks with severe IUGR because of placental problems (the placenta had already started to break down & the cord was small and had infarcts). He was 4 lbs 15 oz. He also had thick mec. It was a miracle he survived. The doctors were completely shocked by his condition. Amazingly, all of the tests they ran on him came back normal. And he's stayed on his 3% growth curve like a champ ever since!

    When I became pregnant with Garrett, I was monitored very closely throughout by MFM and was found to have reversed end diastolic flow (I also initially had a subchorionic hemorrhage with him), but no growth restriction was apparent. Garrett was also born at 39 weeks; however, he was a plump 6 lbs 11 oz. ;)

    Of course I am being followed by MFM again this time.

    So I pray with you fervently, acutely aware of the stark reality you are facing and ever full of faith and hope that God has created your little man to be a medical miracle just like ours. Hugs!

    PS - Love the ultrasound pic. Adorable profile!

  6. Oh MY!!! Karrn, I had no idea the full extent of what you guys have been through. What a rollercoaster of emotions and so much to bear. For what my dinky little opinion is worth, it sounds like you guys are making some mighty wise decisions to hang in there and see what God has in store for your little peanut. Its a whole new reality for the analogy of giving your up Isaac on God's alter. I will hit my knees in prayer tonight and ask my other friends to do the same, if you don't mind. But my offer for the more tangible things still exist if any of your wonderful family members need a break (house cleaning, cooking, taking Jeremiah for a play date, etc.) Just let me know. but it sounds like you are in good hands - and for that I am extremely greatful. You & James are an inspiration and your little "Isaac" is an amazing soul regardless of how long God chooses to bless this world with his presence. He is so lucky to have you two for parents! Much loave and an over-abundance of blessings!

  7. ps- please forgive all of the typos - I think much more clearly than I type! Praying for you and the little one!

  8. Karrn and James, I pray for your little one. I know miracles happen and our advance medical technology can sometimes make us make decisions that were not meant to be made by man alone. Keep trusting and believing in Him. God bless that little one in your womb and keep him safe at His will! I can't imagine the emotions and turmoil you are facing at this time. I pray God gives you the strength and perseverance to continue! God bless you all!

  9. I don't even know what to say.... We'll be praying for the Lord's hand to be on you all. You are a special family, with especially strong and capable people around you at this time. I'll be praying a special prayer for James, from one dad for another, that he's able to sleep and rest effectively to remain mentally and emotionally sharp for his families' needs.

  10. Karrn....How life can take us on unimaginable journeys. We are forced to ask ourselves tough questions and at times can be surprised at our conclusions. Keep your faith and keep James even closer. Having that support from your partner will make any outcome one that is manageable. I love you and will keep you in my thoughts. Robyn