Infant Loss Awareness

October is Pregnancy and Infant Loss Awareness month. 

Just missing her...

I find myself thinking of my sweet little girl a lot and missing her.  I search myself for an answer, wondering why.  Is there something triggering this?  We aren't close to any special date or memory of her, so why now? 

And then I realize, I miss her because she is a part of me.  Her life and death is written on my heart.  I don't have to have a reason.  It is just as normal as missing Zach who is living in Vermont with his mom, or missing Nathan who we rarely see.  She's my child.  Some people may not understand and that's ok. 

God gave her to me to love, forever, not only when she was in my arms.  So today as I remember my sweet angel baby and a few tears fall at the pain of her loss, I am thankful to the Lord for His love and comfort that has healed the hole in my heart.  I rest in the knowledge that some day I will hold her in my arms and stand beside her as we worship our Lord and Savior Jesus Christ, together for eternity!!

Mollie's baby sister

The past month has been a blur of activity and lack of sleep.  Little Miss Caitlin decided to surprise us with an early arrival, 17 days before her scheduled c-section!  I was nervous and anxious to see her. 

As I lay there on the operating table waiting to get a glimpse, all the feelings and memories came flooding back .  Dan was a wonderful support and only he knew the anxiousness that was inside me.  He asked the doctor to please hold her up as soon as she was out so that I could see her.  I can't even begin to describe the emotion that ran through my heart at seeing her and hearing her cry.  For some reason I didn't think I would be as emotional as I was.  I didn't want to nor did I have time to explain it to the physicians who were working on me.  Thankfully Dan was there to comfort and give me the look that said he understood what was going on in my heart and mind.

My mind raced back to 7 years before and I cried, the kind of cry that shakes your entire body.  I wasn't able to see, touch or hear Mollie until she was 24 hours old. 

There have been many tears like those first ones in the last month and I'm sure there will be many more.  When I held the little outfit, bought for Mollie to come home in that she never wore, my heart was torn.  I want Caitlin to wear it some day.  There are times when I am suddenly caught with fear and I am compelled to check her breathing, one more time.  And then the times when I start to say her name and realize I am about to call her Mollie.  These are the things that cause the secret tears shed only with my husband and my Lord. 

I didn't know I could feel such sorrow and joy at the same time.  

Little Miss Caitlin, Mollie's baby sister. <3

Seven years later

It's been seven years since sweet Miss Mollie entered heaven.  I can't believe it has been that long since I held my baby girl.  Some times it seems like an eternity and sometimes it seems like just yesterday.  If I had known what was going to happen in the beginning I probably would have lost my mind or ran the other way.  Thankfully, God in His grace reveals things to us slowly.  

Mollie changed my life.  Before her and what we went through, I was barely a mediocre Christian.  I knew the Lord and believed in Him.  I believed His word and that He would always be with me but I had never KNOWN it before.  During that time in my life, I was alone most of the time.  I was in another country, away from my extended family, and the family that was in the same country with me was more than an hour drive away.  No one around me spoke my language fluently and all the ideas and customs were different. 

I once asked God why He had me go through that with all those factors in place.  I explained to Him that if I had been here in the US, with family and friends around, it would have been easier.  He gently spoke to my heart telling me that He had to remove everything I held onto for support in order to get me to only look to Him and to rely on Him completely.  I finally understood. 

I am grateful for that time.  I am grateful because I learned unconditional love.  I have always loved my children but now that I have lost one, I understand deeper love for them.  I know that there is no guarantee for how long they will live or that nothing ‘bad’ will ever happen to them.  I know that they aren’t really mine.  They belong to the Lord.  Only He knows the number of days they have and what will happen in those days.  And best of all, He loves them more than I ever could even imagine.  I rest in the knowledge that He is in control of all things.  Not because someone told me that but because I have witnessed His hand in my life.  It also makes heaven a sweeter place.  I know that I will be there with my family again one day.  I don’t want to have to watch even one more person die but if I have to, I know that I will survive and He will be with me every single step of the way. 

Two 1/2 years after Mollie died, her daddy followed her into Heaven.  He battled brain cancer bravely but lost his fight.  I know that they are in heaven together, praising our Lord. 

God has a way of bringing things around.  As Romans 8:28 says:  "And we know that all things work together for good to those who love God to those who are called according to His purposes."

The Lord brought good out of all of this.  He taught me lessons and gave me a compassion for others that I didn't have before.  I'm grateful for that. 

"I will love You, O Lord, my strength. The Lord is my rock and my fortress and my deliverer; My God, my strength, in whom I will trust; My shield and the horn of my salvation, my stronghold." Psalm 18:1-2

The last days...

We had 12 more wonderful days with her before she died.  Her last 24 hours, I spent with her, mostly alone because Phillip was afraid to watch her die.  He didn’t think he could handle it.  As much as he didn’t want to be there, I knew I had to be there.  The nurses finally talked me into going out of the room for a few minutes and I went outside.  I told them that I was afraid if I left she would die and I wouldn’t be there.  They assured me that they would let me know.  I hadn’t been outside more than a few minutes when they called me back in.  I remember starting to slowly walk back and then I realized what I was doing and started running.  I went into the room and stood above the nurse who was holding her.  For a few minutes I began to panic and started trying to figure something out to save her.  I was frantic and began to make deals again and beg God to stop this tragedy. My brain was in overtime and then I felt the Lord give me peace again.  I sat down, took her in my arms and kissed her little head.  I rubbed her back with shaking hands and kept saying “shhh, it’s ok, mommy is here, you can go” and then she died.  I knew the second she was gone.  I held her for a few hours and waited for Phillip to show up.  He couldn't be there when she died, he knew he couldn't handle it.  After he arrived we gathered my things and were given a card, a binky and a lock of her hair.  We walked out of the hospital and went home.  It was the longest, quietest walk of my life.

The difficult journey

Mollie did splendidly well at first.  She was even taken out of the ICU for a couple of days.  Everything seemed to be fine.  We met with the doctors the day I was released and talked about her further treatment.  They told us in the beginning that she would not live more than 24 hours without the embolization but now they felt we could hold off for awhile.  We concentrated on getting her to grow and learning about the chromosome disorder.  We met with the geneticist and were told that it wasn’t normally a hereditary thing but they wanted to check our DNA to see if there was anything that could tell them why she had the deletion.  She was missing a small part on one of her 13^th chromosomes.  Our genetic tests came back normal so they believed it was a spontaneous event. 

I left the hospital on March 2^nd and we visited every other day.  I called every morning and every evening to check on her and her progress.  My mom came to visit and help us out.  It was nice to have someone else there. 

The morning of March 17^th, they called us saying that the doctors needed to meet with us.  Mollie wasn’t doing well at all and we needed to make some decisions.  I was so afraid to go see her.  When we walked in, she had a huge tube in her nose and was her skin was gray.  My heart broke, again.  We met with the doctors in a private room.  They told us that her heart wasn’t doing well and her oxygen levels were dropping.  The weight she had gained in the past 2 ½ weeks turned out to be just fluid retention.  Her heart was enlarged on one side, her liver was enlarged and her left eye was bulging out due to the fluid. 

The chromosome disorder made it difficult for her to gain weight quickly which is what they needed.  The smallest catheter was still too large for her tiny veins so they couldn’t do the embolization.  They were pretty sure that there had been too much damage to her lungs and heart for her to survive even if they did the embolization and they couldn’t occlude it all at once anyway.  They needed to know if we wanted to put her on life support.  I asked if she would live if she was on life support and they said only as long as she was on it.  We asked if they would give us a minute to pray and decide. 

They left the room and I burst into tears.  Every dream I had for her had been shattered.  I thought that God would heal her and that I would take her home and raise her.  I thought my toughest battle would be raising a child with a chromosome disorder who would probably never walk and never talk.  I was prepared for that.  Now, God was asking me to trust Him without knowing what would happen and with thinking that she would probably die.  He wanted me to Love Him and trust Him and give it all to Him even if she died.  I knew that I couldn’t make the decision to remove life support when the time came to let her die so we decided not to put her on.  We asked them to keep the current tube in and see what happened. 

At that point, I visited every day.  I was so very mad.  I felt God, and the doctors had let me down.  I kept making deals with God.  I told Him that if He let her live, I promised I would make every minute count.  I felt Him speak to my heart telling me, “she is alive now, make every minute count and trust that I know what is best”.  Finally I did that and it was so wonderful. 

February 25, 2004

One week later, February 25, they were doing the monitoring as usual.  I was having a tough day, feeling lonely and tired of being there.  Usually they only monitored for 30 minutes, but this day they kept coming and telling me that they wanted to go a little longer.  They kept telling me to drink water and tea.  Finally, after 1 ½ hours, they sent a nurse in to tell me that they wanted to do an ultrasound.  Something came up with the monitoring and they wanted to look at her.  I was upset and wanted to talk to the doctor.  He walked in, someone I had never seen before, stood at the end of my bed and said, abruptly, “there’s something wrong with the baby and we need to do an ultrasound”, then he walked out.  I was very upset then.  The nurse came in with a wheelchair.  Normally they let me walk to the ultrasound, so this was strange.  When I got to the room, the doctor who I had just seen was there with another doctor.  He said to me “I understand that you have a problem with the way we are doing things here.  If you have a problem, you don’t have to stay.”  I was so mad.  I stood up from the wheelchair and I looked at him and said, “You don’t understand anything.  For three weeks I have been on a roller coaster here trying to figure out what is wrong with my baby and then today you walk into my room and say ‘something is wrong we want an ultrasound’ and walk out without explaining anything to me.”  I was crying at this point and he looked a little sheepish.  He said to lie down and we would take a look.  Just then my favorite doctor came in.  He sat down right next to me and touched my leg and said “I understand you don’t know what is going on here.  We just want to take a look.  The monitor of the baby’s heart rate was low and we want to see if we can see why.”  He took over.  I looked at the screen and immediately I could see her little heart barely beating.  I knew something was wrong.  He, my favorite doctor, told me that they wanted to take me down to the delivery and prep me and monitor me some more.  If things didn’t shape up soon they would have to do the cesarean that day.  I got back in the wheelchair and they literally ran me down the hall to the delivery room.  I had to take off my clothes and they began prepping me while they monitored her heart.  Then the doctor came in on the phone, looked at the monitor, spoke to whomever and quickly walked out.  Next thing I knew, four doctors came in looking very serious.  My favorite doctor said, “I just got off the phone with the geneticist and we have the full results from the amnio.  She (he pointed to a female doctor) speaks English the best so we will have her explain it to you.”  She looked at me (I later remembered that she was the anesthesiologist) and began.  “The geneticist said that your baby has a chromosome disorder, a deletion on one of her chromosomes.  We can’t tell what this will mean because it is rare and there isn’t a lot of literature about it.  There is a 99% chance of some type of disability, either mental, physical, or both.  We need to know how you want us to proceed.”  I wasn’t sure what they were asking so I asked what they meant.  My favorite doctor said, “We need to know if you want to take the baby or let nature take its course?”  I looked at the four of them and said, “Are you asking me if I want you to try to save my baby?”  They said yes and nodded.  I told them, “My husband and I don’t believe it is our decision if our baby lives or dies.  That is up to God, but we will do whatever we can here to help that.”  So he asked, “Then you want us to take the baby?”  I said yes.  He said “ok, you are having a cesarean, NOW.”  I asked, “Can someone call my husband and tell him?”  Next thing I know, I am lying on a bed in the OR and the anesthesiologist is next to me telling me what she is going to do.  They put some stuff in my IV and I remember thinking, “I wonder how long this will take…..” and I was out.   

I awoke to two doctors over me looking very concerned.  I thought they were looking that way because Mollie was dead or wasn’t doing well.  I kept trying to talk to ask them about her but I couldn’t because my throat was too dry and hurt a little (from the tube).  They continued to rush around me all concerned while I finally sputtered out “my baby is she ok?”  They looked at me and said, “The baby is fine but your blood pressure is bottoming out.”  Immediately I laid back in peace and my blood pressure went to somewhat normal.  After that, they let Phillip come in, he had just arrived.  The drive from our house to where I was at took a little more than an hour.  As soon as I saw him I asked if he had seen her.  He said he wanted to see me first and I basically told him to get out and go see her.  I needed to know if she was ok and I couldn’t go.  (Later I found out that he was afraid to go see her because he thought she might be dying and he couldn’t bear that)  Finally he went and they had taken a picture for him to bring to me.  She was so beautiful and looked perfect.  I was totally relived then. 

As time went on.

I spent one week in the Hospital in Wiesbaden and was transferred to the University of Marburg where I stayed for 2 more weeks before she was born and then one week afterward.  So in all, I was in the hospital for 4 weeks.  The kids were without a parent for 4 days until Phillip could get back from Iraq. 

I can’t tell you how happy I was to see him when he walked into my hospital room.  Over the 3 weeks I spent in the hospital, we learned more about what was wrong.  Mollie had a rare malformation in her brain.  The Vein of Galen malformed and was larger than it should be.  Apparently when a vein is large, it requires blood flow to fill it.  This required her heart to work overtime, all the time which was causing heart failure.  The treatment (embolization) is to go into the femoral artery (upper thigh) with a small catheter, all the way up to the brain to occlude the vein.  They do this by using a special glue-like substance or coils.  Then, the blood flow is reduced and the heart can heal. 

At the University Hospital, they decided to do an amniocentesis because Mollie was so small for her gestational age.  In fact, they didn’t really believe me when I told them I was 31 weeks.  It was very important to know exactly how far I was because they said that they couldn’t help her if she was born before 32 weeks.  They also wanted to find out if there was anything else going on.  The initial test came back showing nothing.  This initial test tested for a trisomy (three of one chromosome) for Chromosomes 13, 18, or 21.  (trisomy 21 is down syndrome).  Next would be a more extensive test to check all the chromosomes for trisomy (3), monosomy (1), translocation (part missing on one chromosome but found on another) or deletion (part of a chromosome missing). 

So, we just plugged along.  Somewhere around the 16-18 of February, we met with the professors and talked about options.  They felt that if she stayed in the womb longer, it would be better for her to grow.  So they told me that they would plan to do the cesarean at 36 weeks.  They would set it up to do the cesarean in the OR at the Neurosurgery clinic so the Neurosurgeon could then immediately perform the embolization on Mollie.  They said she wouldn’t live more than 24 hours without having this done.  I was 32 weeks at that time so that meant that I had to stay there for 4 more weeks.  It was hard to imagine but I figured I could tough it out. 

The first few days

On February 3, 2004:
I went to my normal OB appointment.  I was hooked up to the Fetal Heart Monitor (in Germany they do this at every visit beginning at 30 weeks) and everything seemed normal.  Next came the ultrasound, which is also common at every visit in Germany.  During the ultrasound, the doctor found something that wasn’t normal.  The only information I received was that there was an unusual blood flow to the brain and that I would need to see a specialist the next morning.  I tried not to stress about it.  When Phillip and I had our “chat” time that evening, I told him what the doctor said and he said we shouldn’t worry about it.  He felt we should pray and wait to find out what the specialist said the next day.  I went to the Women’s Bible Study and tried not to think about it. 

February 4: 
I went to the appointment with the specialist and was given another ultrasound.  First there were two doctors present.  Eventually I had four doctors standing over me speaking to each other in German and looking very concerned.  Finally, one of them told me that there was a malformation in the baby’s brain and that I would have to deliver via a cesarean section.  I was also told that I would have to be admitted to the hospital immediately to have close monitoring of the baby’s heart rate.  I explained that my husband (Phillip) was deployed to Iraq and that I had four other children at home that I would have to make arrangements for.  The doctors decided that I should go and make arrangements but I would need to return that day to be admitted.  I went home and explained to Nathan and Cortnie that I would have to be admitted to the hospital because something was wrong with the baby.  I spoke to my neighbors who offered to watch the children until Phillip could come home.  I also called the Wiesbaden Army Airfield Patient Liaisons to get a Red Cross message sent out to Phillip’s unit in Iraq.  At 1:00pm, Phillip was able to call and I tearfully told him what the doctors had said.  I also called my family in the states to inform them.  The next day was my birthday and I didn’t want anyone to be alarmed if they called.  At 4:30, my neighbor came to drive me to the hospital.  I was officially admitted about 5:30 pm and was put on a fetal heart monitor.  A doctor came in and went over the consent for the c-section then did another ultrasound.  The baby’s heart rate was not good so I was transferred to a room on the delivery ward to be closely monitored.  I was also given the first of two injections of steroids to mature the baby’s lungs.  Throughout the night, Dr Mueller and the midwife monitored me with the fetal heart monitor.  I began having contractions that were causing the baby to go into heart failure.  I was given Magnesium Sulfate to stop the contractions and given another injection of the steroid through my IV just in case they had to deliver the baby that night.  Thankfully we made it through the night and her heart rate began to improve.  We later learned that the malformation could not be treated until the baby was at least 32 weeks gestation.  At this time, I was 30 weeks, 3 days.  Praise God for sustaining us. 

Mollie's story

I decided to start a blog, seems like everyone does this now.  I use to have a website but it was too difficult to keep updated not to mention having to pay for it.  So, I thought I would go this route.  This one is dedicated to my sweet little Mollie.  It is about her short life and how she changed mine.

It has been seven years since she was born and died.  I think this year it is heavy on my heart to share her, maybe because of our new little girl that will be here shortly.  Maybe it's because of what my friend's family is going through as they watch their little girl struggle.  I don't know why, I just feel like sharing, again.  

When life was turned inside out......

I remember the exact moment my life was turned inside out.  As I lay on the table watching the ultrasound, the doctor was making small talk.  He had mentioned that this would be a short ultrasound since the previous one had been so complete.  He was just making sure that everything was good.  Then he stopped talking.  He continued to look at the screen and seemed confused.  He began to talk to his assistant in German.  I began to get scared and immediately started to pray.  It was more of a one sided conversation with God.  I told Him that I was scared and that I really needed some peace and that I wasn't sure what was going on but I needed the strength to handle whatever it was.  This was the first time that I remember turning to the Lord as a first response.  Usually I would fret and worry and then would pray.  I believe it was the Holy Spirit with me that prompted me to seek His comfort.  The whole time it was as if everything stopped.  The world stood still as I waited for the doctor to say something.  Finally he broke the silence to tell me that 'something' seemed to be wrong.  There was an unusual amount of blood flow to the brain and he was referring me to a specialist to confirm what was going on.